Fetal Alcohol Spectrum Disorder (FASD)

Year 5 Evaluation of the Government of Alberta’sFASD 10 Year Strategic Plan

January 25, 2013

Acknowledgements

The Alberta Centre for Child, Family and Community Research thanks the following individuals for their significant contributions to the year 5 evaluation project. Special thanks is extended to Denise Milne and Shelley Birchard for their continued leadership, advice and support in coordinating this extensive initiative.

Researchers/Evaluators/WritersSusan Abells Michelle Anderson-Draper Gail Andrew Erin AtkinsonCecilia Bukutu Ellis Chan Anderson Chuck Allison FoskettLaura Gould

Tara Hanson Philip Jacobs Jenelle Job Egon Jonsson Wence Leung Kendra McCallum Jessica Moffatt Thanh NguyenTeresa O’Riordan

Kelli PalfyJacqueline Pei William PelechCheryl PothDavid St. Arnault Sukhpreet Tamana Suzanne Tough Virginia Tze Katy Wyper

EditorCarmen Rasmussen

Editorial AssistantsKennedy DenysMichael-Anne LaFrance

Project ManagerTara Hanson

Evaluation Advisory Committee Members

Gail AndrewShelley BirchardSterling Clarren

Karen CottonLouise HayesDenise Milne

Janice PennerKerri Sutherland

ISBN # 978-0-7785-9855-8

This report presents the key findings, conclusions, and recommendations of the Year 5 Evaluation of the Government of Alberta’s 10-year strategic plan to address the social and economic impacts of Fetal Alcohol Spectrum Disorder (FASD), which directly or indirectly touch every Albertan.

About FASDDrinking alcohol during pregnancy can cause irreversible brain damage to an unborn child. Those living with the disorder may require support throughout their lives to cope with a variety of neurobehavioural impairments. Those with FASD are also at risk for secondary disabilities, including mental health problems, behavioural issues and substance abuse, leading to disruptions in school, legal issues, and involvement in the justice system. Children with FASD are found to have a lower quality of life than children without FASD in several domains, including physical, emotional, school, social, and cognitive functioning. FASD also significantly impacts families and caregivers, affecting their community and social life, their relationships, and daily functioning, such as their finances (Denys & Rasmussen, 2012).

FASD is an umbrella term that covers several alcohol-related medical diagnoses. It is often referred to as the “Invisible Disability,” as the difficulties may not be linked back to prenatal alcohol exposure, leading to late diagnosis and access to appropriate interventions, which increases the risk for secondary disabilities including mental health disorders or addictions (Streissguth, et al., 2012).

FASD is a lifelong condition resulting from organic brain damage and has no cure. Many children with FASD are not raised by a birth parent and experience multiple placements and different caregivers with different levels of understanding of the lifelong disability of FASD. It has a devastating impact on individuals and communities across the province, with an estimated prevalence of 1 in 100 live births (Stade, et al., 2009), affecting approximately 36,000 Albertans (Government of Alberta, 2012). The cost of FASD to the individual and society is profound, as those with FASD often require medical treatment, special education, family supports, housing and disability supports, as well as legal and correctional services. In Alberta, the direct medical cost for FASD is estimated at between $140 million, using a low incidence rate of three FASD cases per 1000 births, and $410 million, using a higher rate of 9 FASD cases per 1000 live births (Thanh and Jonsson, 2009).

Drinking alcohol during pregnancy can cause irreversible organic brain damage to an unborn child.

FASD is a lifelong condition and has no cure.

One of every 100 babies born in Canada is affected by FASD.

FASD affects approximately 36,000 Albertans.

FASD has a devastating impact on individuals and the cost to society is profound.

In Alberta, the direct medical cost for FASD is estimated at between $140 and $410 million.

PLUS

the costs of special education, disability supports, family supports, housing, legal aid, and correctional services.

A Brief History of Alberta’s Response to FASD

Knowing that FASD is preventable underscores that it is a complex, multidimensional social and public health issue, and not a disease that can be cured. Fetal Alcohol Syndrome (FAS) began to be recognized and addressed in Alberta in the early 1990s when the government established a workforce development initiative to support the training of social workers and support agencies to raise awareness of FAS. A cross-sectoral partnership on FAS between the government and community stakeholders was established in 1998, which led to the creation of regional FAS coordinating committees and the recruitment of “champions” from key government departments and organizations to disseminate information about FAS.

In 2003, the cross-sectoral partnership on FAS was transformed into a government-led Cross Ministry Committee on FASD (the CMC), a decision-making body responsible for developing and implementing a FASD 10-Year Strategic Plan (2007-2017), which was approved by the Government of Alberta’s Standing Policy Committee on Health and Community Living in 2006. Funding for this initiative was to be used by the CMC to support the planning and delivery of provincial government programs and services, with funding redistributed to each of the partnering ministries.

When, however, only half of the original funding request was received, the CMC made the strategic decision to transform seven of the regional FAS coordinating committees into regional FASD Service Networks (the Networks), enabling communities to make the most efficient use of the limited funding received. As funding increased, the number of Networks was increased to 12 in 2009. Each Network is designed as a community-based and community-led partnership that reflects local priorities and needs while at the same time demonstrating alignment with the government’s FASD 10-Year Strategic Plan.

Alberta’s FASD 10-Year Strategic Plan

This Plan focuses on three areas of service (Awareness and Prevention, Assessment and Diagnosis, Supports for Individuals and Caregivers) and four areas of activity (Research and Evaluation, Strategic Planning, Training and Education, Stakeholder Engagement). It identifies seven specific outcomes and strategies to implement each service and activity area. The Plan also calls for ongoing monitoring to ensure targets are being met and desired outcomes are being realized. Evaluations were set for years five, seven, and ten of the 10-year plan (2007-2017). See the diagram of the organizational structure below.

Year 5 Evaluation of the FASD Plan

The Alberta Centre for Child, Family and Community Research (The Centre), a not-for-profit charitable corporation, was established in 2003 as a partnership between Alberta’s universities, the community and the Government of Alberta. The Centre was established to support and disseminate research knowledge and evidence on policy issues related to improving the well-being and health of children.

The Centre developed, coordinated, and managed the Strategic Plan evaluation in Year 5 of its implementation (2011/12). The evaluation was designed to measure progress towards a comprehensive and coordinated provincial response to FASD across the lifespan.

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Structure of Alberta’s FASD Service Network Program (FASD-SNP)

Multiple distinct projects with different methodologies and expertise were initiated to fulfil the scope of the evaluation. The Centre recruited individuals with the specialization necessary to complete each project (see page XVII for a list of the Year 5 Evaluation Research Reports). Stakeholders and experts were consulted to focus and contextualize the inquiry and were kept informed and engaged throughout the evaluation process.

The evaluation provides baseline measures against the outcomes and targets set forth in the Plan and provides a foundation for subsequent evaluations. Recommendations based on the results address key policies and practices to support individuals affected by FASD, and the continuous improvement of the Alberta FASD Network model that has evolved over the past five years.

Following is a brief summary of findings from these reports. For the purpose of this overview, evaluation questions under each outcome are listed together, followed by key findings arising from the questions.

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FASD 10-YEAR STRATEGIC

PLAN

MINISTRY SPECIFIC

INITIATIVES

FASD-CMC

FASD SERVICE NETWORKS

Education

Health

Human Services

Justice and Solicitor General

Enterprise and

Advanced Education

Alberta Gaming

and Liquor Commission

(AGLC)

Aboriginal Relations

Alberta Health

Services

First Nations and

Inuit Health Branch (FNIHB)

Public Health Agency of Canada

(PHAC)

Safe Communities

Métis Settlements

FASD Service Network (MSFAN)

Northeast Alberta

FASD Service Network (NEAFAN)

Mackenzie FASD Service Network

(MACFAN)

Northwest Alberta

FASD Service Network (NWFAN)

Lakeland FASD Service

Network (LLFASD)

Northwest Central

FASD Service Network (NWCFAN)

Edmonton FASD Service

Network (EFAN)

Prairie Central FASD

Service Network (PCFAN)

Central Alberta FASD

Service Network (CENFAN)

South Alberta FASD

Service Network (SFAN)

Calgary FASD Service Network (CFAN)

Southeast Alberta

FASD Service Network (SEFAN)

Experts

Communications

Human Services

Health

Justice & Solicitor

General

Education

AGLC

CANADA FASD

RESEARCH NETWORK/CANADA NORTHWEST

FASD PARTNER

FASD Strategic Plan Service Areas

Awareness and Prevention

10 Year Target: 95% of Albertans understand that drinking alcohol during pregnancy can lead to FASD and lifelong disabilities.

Evaluation Question: Has there been an increase in understanding among Albertans that alcohol use during pregnancy can lead to FASD, that FASD can be prevented, and that FASD prevention is a shared responsibility?

Methodology: There was no existing data available to measure whether or not there has been an increase in understanding. A telephone survey of 1203 adults was conducted in Alberta. Demographic characteristics of respondents were similar to the general Alberta population. Limitations: The survey did not include youth under 18, those without a telephone landline, or non-English speaking Albertans. The survey did not focus on reaching women who may be at-risk of drinking alcohol while trying to get pregnant and during pregnancy.

Key Findings: This survey found that 85.7% of respondents were aware of FASD. Of these, over 96% know that alcohol use during pregnancy causes FASD, that FASD can be prevented, and that the best way to prevent FASD is by not using alcohol while trying to get pregnant and during pregnancy. Of those who had heard of FASD, 40.1% knew someone with FASD, and 39.1% knew of someone who cares for an individual with FASD. 14.3% of respondents had not heard of FASD. These respondents were more likely to be male (62.8%), between the ages of 18 and 44 years, non-Caucasian, and born outside of Canada. Almost all participants responded that they believed a woman should be supported by others not to drink while pregnant. The woman’s family and partner/spouse were identified most often as those who should provide support. 60+% identified healthcare providers, government, and community as having roles in supporting pregnant women not to drink.

Evaluation Question: Is there evidence that alcohol use during pregnancy has been reduced or eliminated among at-risk women and overall among women in Alberta?

Methodology: There is no direct data measuring whether or not alcohol use during pregnancy has been reduced or eliminated. Researchers conducted an evaluation of the Parent Child Assistance Program (PCAP) to use as a proxy. PCAP is a three-year home visitation intervention program, implemented across Alberta, for women who have a history of alcohol and drug abuse and are at risk of giving birth to a child with FASD. The program uses a mentorship model, where PCAP mentors work with clients to access needed services, to complete substance abuse treatment, and to choose effective family planning strategies.

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Outcome #1a: Albertans understand that alcohol use during pregnancy can lead to FASD, that FASD can be prevented, and that FASD prevention is a shared responsibility.

Outcome #1b: Alcohol use during pregnancy is eliminated.

Data collection: Client file review (Addiction Severity Index (ASI) Intake/Exit Interviews and Biannual Client Progress Interviews from 2004 to 2011 inclusive). Limitations: Missing ASI exit and biannual progress interviews.

Key Findings: The number of Network funded PCAP service providers has increased from 4 (in 2008) to 18 (in 2011). The total number of clients served has increased from 15 in calendar year 2008 to 254 in fiscal year 2010/11. Of clients who responded to the interview question of ethnicity (N=95), 58.9% identified as Aboriginal, 20% as Caucasian, and 21.1% as other. Trends for clients remaining clean and sober over 24 months (N=57) showed a significant increase over time. Over a period of 6 to 24 months, client employment trends dramatically increased (N=47) and clients receiving welfare dramatically decreased (N=60). Overall use of birth control methods dramatically increased from intake to 24 months (N=45). Of the 69 births reported over a 24-month period, 49 births (71%) occurred during the first 6 months of PCAP services. Only 8 births (16%) may have potentially been exposed to alcohol over later periods (data limitations must be noted).

Assessment and Diagnosis

10

Year Target: Multidisciplinary teams complete 900 assessments annually.

Evaluation Question: Is there evidence of improved access to quality FASD assessment services provided by multidisciplinary teams?

Methodology: Interviews with 12 Alberta clinics (directors and clinicians); document review.

Key Findings: There are currently 24 FASD clinics in Alberta, 17 of which are funded through the CMC’s FASD Service Network Program. The other clinics are private or funded by the government through Alberta Health Services. The number of Network funded clinics has increased from 6 (in 2008) to 17 (in 2011). The total number of annual FASD assessments conducted by these clinics has increased from 129 in calendar year 2008 to 401 in fiscal year 2010/11. The largest increase was for youth ages 7 to 18. Seven out of the 12 clinics interviewed see clients five years old or younger, and eight out of the 12 clinics provide assessment services to adults. Assessment caseloads range from 12 to 180 clients per year, per clinic. All 12 clinics interviewed have team members from at least five different disciplines. Most consist of a clinic coordinator, pediatrician, occupational therapist, speech language pathologist, psychologist, neuropsychologist, and social worker. However, many professionals are employed only

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Outcome #2: Adults, children, and youth suspected as being affected by FASD have access to timely and affordable diagnostic and assessment services.

Diane’s StoryDiane is 29 years old and has two children diagnosed with FASD. Her mother helps her look after the kids. She has never accessed any adult support services, but her problems are piling up. She has a new boyfriend and is running with a rough crowd. Her probation officer called the FASD Network looking for help.

The Network organized an assessment with its clinic team in under 10 days. They called an agency to find a mentor to support Diane during the assessment process. The mentor is now helping Diane access the supports and services recommended by the clinic team. She is receiving addictions counselling, has been referred to a family doctor, and is using birth control for the first time since her youngest child was born.

part-time, and clinic members reported feeling the need to complete tasks that are not under their area of specialty. Clinics have achieved an increasingly consistent standard of practice by following Canadian guidelines for general procedures and using the University of Washington’s 4-Digit Diagnostic Code. Challenges to the assessment process include: waitlists, lack of sustainable funding, funding eligibility constraints, need for longitudinal assessments, lack of FASD awareness, lack of post-assessment support services, need for more coordination between agencies, and difficulty accessing research and best practices.

The Provincial Evaluation of Alberta’s FASD Service Networks suggests that the cost of assessment and diagnostic services can be up to $4,000 per client. A review of the Alberta FASD Inventory indicates that although government bodies fund a majority of assessment services, three out of twelve clinics charge an individual fee for services. Clinics utilize government funding on a per-needs basis, and with cases deemed as less critical, clients are expected to cover their own costs.

Supports for Individuals and Caregivers

10 Year Targets: 80% of individuals diagnosed with FASD are receiving services. 80% of service providers have integrated care plans in place to ensure coordinated service delivery. 80% of caregivers are satisfied with the services they receive. 80% of caregivers report services are available to meet the identified needs of those individuals in their care affected by FASD.

Evaluation Questions: How has service coordination been facilitated to meet the support needs of individuals diagnosed with FASD? What proportion of individuals diagnosed with FASD in Alberta is receiving services to help manage their disability? Do caregivers believe they have coordinated access to support services that meet their needs?

Methodology: Literature review on frameworks supporting service coordination; review of FASD-specific data from research studies focused on intervention recommendations after clinical diagnosis and current service utilization; document review.

Key Findings: The literature identifies three levels of service integration and coordination: at the system/sector-based level, the agency-based level, and the client/family-based level. All three of these approaches are evident in the Alberta FASD Service Network model, with the CMC providing macro-level system coordination through communications and removal of policy barriers, the Networks developing local partnerships for clients and caregivers, and key caseworkers/mentors providing coordination and navigation directly to clients and caregivers.

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Outcome #3: Individuals affected by FASD and their caregivers have coordinated access to support services to meet their needs.

Anne’s StoryAnne is a 74 year old caregiver who still looks out for her five adult “foster” children who are FASD affected. She worries, “Who is going to help them when I am gone?” She helps them buy groceries and manages their money to make sure ends meet. She also helps them with their parenting and relationship problems. A friend suggested she contact the FASD Network. The Network is providing her with information, and are connecting her with other caregivers in her community.

The clinics use a consistent multidisciplinary approach to assessment. The Rajani FASD Clinic Team located in the Lakeland Network provides training for clinics within Alberta and across Canada. The Provincial Evaluation of Alberta’s FASD Service Networks indicated that every Network has created successful collaborations in their communities, with examples cited in annual reports. Service delivery improvements through collaborations were identified, such as waitlist minimization, navigation, and follow-up planning. Quantitative evaluation is not available to support these findings. High rates of referral, especially to mental health related services, healthcare, income supports, and housing were identified in the data.

The literature also identifies other important frameworks needed to direct how services are delivered that stress the need for a continuum of supports and services. These include the World Health Organization’s International Classification of Function (ICF), and the Life Needs Model, which fits with ICF goals of community participation and quality of life. Alberta-based research in other areas of disability has identified important themes and areas of need that can be applied to the FASD population, including: standardization of services; a holistic integrated lifespan approach to care (wraparound services) based on ICF principles, and key caseworkers (such as mentors) to assist families with coordinating care.

Assessment and diagnostic clinics in Alberta do not currently collect data linking diagnosis to service access. However, a research team at the Glenrose Rehabilitation Hospital reviewed 306 files with a confirmed history of prenatal exposure to alcohol to determine the recommendations given at the time of assessment (Baugh et al., 2012). Educational recommendations were predominant in all age groups. Younger children under age 5 were given recommendations for family supports, reassessment, and developmental therapy, while there was evidence of increasing need for mental health services in both the 6 to 12 and 13 to 17 age groups. A longitudinal follow up of 50 of those families was conducted to determine what recommended services were accessed. Families most often accessed the following services after recommendations: IPP/modified school program (100%), developmental supports (95%), medication/psychiatry (81%), child counselling (67%), and support for the parent (67%). Parent advocacy/education (50%) and behavioural intervention for the child (14%) were the least accessed recommendations. Many caregivers had received education/advocacy prior to the assessment process. Behavioural interventions specific to children with FASD needs further research.

A pilot project at the Glenrose assessed 10 adults who had received a diagnosis of FASD five or more years prior by the Glenrose pediatric team (Brodeur et al., 2012). The increasing needs of this population were evident, with more impairment in all areas of functioning. The need for supports was across all systems and included areas such as mental health, addictions, employment, safe housing, income supports, legal issues, and general health care, especially reproductive health. The need to provide the adult with a mentor or support person prior to the clinic, throughout the assessment process, and in accessing the recommendations after the clinic was identified as critical. Many of the adults had aging caregivers or had become disconnected from any supports due to lifestyle patterns.

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Peter’s storyPeter is 23 years old, homeless, and living in rural Alberta. He has lost his ID. He is living in a tent, keeping warm by a fire and drinking with friends. It is several days before Peter meets with his mentor, who notices that his boots have melted and his feet are burned, and takes him to hospital. Peter is happy to have a mentor who helps him get replacement ID and set up a bank account so he can rent a place to live. The mentor also helps him get to his doctor appointments on time.

There is limited data on the caregiver perspective. However, parent/caregiver satisfaction surveys conducted by the Networks were done mainly around the assessment and evaluation phase of the FASD service provision. Of those surveyed, 85% indicated that after assessment and diagnosis they were completely or somewhat in agreement with the statements “people told me where to get help for my child/dependent” and “people made sure I got help for my child/dependent.” Of clients who accessed supports from the Parent Child Assistance Program (PCAP), 87% either completely or somewhat agreed that the PCAP program mentors “helped me to use programs and services available in the community that I hadn’t used before.”

FASD Strategic Plan Activity Areas

Training and Education

Evaluation Questions: Is there evidence that service providers, families, and caregivers have improved knowledge of and access to training and educational resources that are based on research and leading practices?

Methodology: There was no existing data available to measure whether or not knowledge of and access to training and educational resources has improved. A documents review and stakeholder interviews were used to compile data. Limitations: Reports on training do not use a standardized format and do not consistently report on participating stakeholder groups.

Key Findings: The FASD Learning Series was introduced in 2007. 90% of individuals accessing the sessions did so remotely via videoconference or webcasting (offered in 2011/12). The number of sessions offered fluctuated widely, from 682 in 2008/09 to 178 in 2009/10 and back up to 610 in 2010/11. Between 84% and 93% of those accessing these sessions were service providers. Between 5% and 15% were parents/caregivers. When the 2010/11 content was put up on the CMC website and made available for unrestricted use, 24,355 hits (from 09/10 to 03/11) occurred. Videos accessed were mainly in the individuals or family members/caregivers category. Annual attendance at the FASD Conference (from 2008 to 2011) ranged between 550 and 600. Other learning opportunities include an FASD Community of Practice showcase, a speakers series, PCAP training, and demonstration projects with First Nation (Siksika), Métis Nation, and in several Child and Family Services Authority (CFSA) regions.

The Networks are not funded to provide training and educational resources, and so do not report on these. Eight of the 12 Networks provide some information on their websites about resources and learning opportunities available in their regions, but Information is inconsistent across sites. These websites are not yet being used to their full potential. Focus group results with Network Leadership Team representatives indicate they believe they are aware of and up to date with current research and best practices, that this informs their planning, that their Networks encourage the use of best practice guidelines, and that their funded service providers follow these guidelines.

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Outcome #4: Service providers and families/caregivers have knowledge of and access to training and educational resources that are based on research and leading practices.

Strategic Planning

Note: When the CMC made the decision to redistribute funding to community-based FASD Service Networks, its role changed from promoting and aligning FASD as a strategic priority within government, to ensuring accountability and providing quality assurance for FASD programs and services delivered by Networks in the community. The evaluation questions were therefore developed to focus on how the CMC and the Networks were operating and developing within this new context of a network governance model.

Evaluation Questions: How does the network model compare with other models? Do other models exist for comparison? Have these other models been evaluated? Develop an evaluation framework to determine how the 12 FASD Service Networks collaborate with community agencies to plan and deliver programs and services. What is the history of the FASD-CMC? How was it established? How has it evolved? What collaborations enable it and support its existence? What are the ripple effects of the CMC investments? Examine the CMC and 12 Service Network Model in terms of governance, structure, accountability, funding, sustainability, and recommendations.

Methodology: Document review; interviews with stakeholders; scan of government websites.

Key findings: A scan of Canadian government websites found that there is great variability across Canada with respect to the nature and extent of FASD activity. Only three provinces were found to have a FASD strategic plan in place as of spring 2012: Alberta, British Columbia, and Manitoba. Evaluations of FASD services have been at the program and service level. Evaluations of governance models were not found. The proposed evaluation framework to examine collaboration within Alberta’s FASD Service Network Program provides a tool to support consistent and continuous ways to measure collaboration within and between the CMC, the 12 Networks and other community services and agencies. A logic model and four different data sources are proposed, including a survey, focus groups, observation, and document review.

Key moments in the history of the development of Alberta’s Service Network Program have been described on page 2 of this report.

While there are examples of how the Service Network Program has extended its collaborative efforts outwards, generating partnerships and shared efforts with programs beyond those funded by the CMC, there are no direct measures of the ripple effects of this investment.

A focus group meeting with members of the CMC (conducted as part of the evaluation for Outcome #6) noted that the shift in role from decision-making body to a more coordinating body for the Networks has resulted in a change in reporting mechanisms with senior management and a corresponding decrease in communication with senior government decision-makers, diminishing the ability of the CMC to raise awareness of FASD internally as a government priority. Locally, Networks are not uniformly structured. Nine of the 12 Networks are not legal entities and operate under the guidance of a Network

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Outcome #5: The planning and delivery of provincial government programs and services associated with FASD is accomplished through a collaborative approach.

Leadership Team, redistributing CMC funding to service providers. Two of the Networks are incorporated under the Societies Act and are led by a Board of Directors, providing services directly to the community rather than redistributing funds to service providers. The Métis Settlements Executive Council provides leadership for the Métis Settlements FASD Network.

The FASD Service Network Program has been successful in developing the tools needed to manage network operations and accountability at both the provincial and local scales. The Provincial Evaluation of Alberta’s FASD Service Networks analyzed the level of development of each Network with respect to network governance, planning, funding decisions, financial management, contract management, and performance reporting. Three of the networks received an overall rating of Excellent, five received a rating of Very Good and three Networks are in Development. This evaluation process identified leading practices and has created the tools needed to support continuous improvement in each of these six areas of operation.

The FASD 10-Year Strategic Plan called for the CMC to receive annual funding beginning with $8m in 2007/08, levelling off at $42.250m per year by 2013/14. However, the CMC received only $4.225m at start-up (2006/07) with increases to $16.5m in 2008/09, where it has levelled off. A well-developed funding model is in place to support annual disbursement of funds to the Networks, but it does not address their need for stability, which would require a three-year funding cycle (rather than annual applications). Networks also receive project-specific funding from multiple government ministries, which necessitates separate proposals, each with different project management, accounting and reporting requirements. Focus group participants identified that the lack of coordinated accounting and reporting requirements results in an onerous administrative load for the Networks.

In addition to operations and accountability, management tools are needed to support network participation and maintenance, which include collaboration, research and evaluation, and knowledge mobilization (training and education). The CMC and Network budgeting processes do not separately recognize costs associated with these activities. The funding model does not support Network participation as partners in research and evaluation, nor does it support the training and education needs of their service providers and families/caregivers. Although the CMC established subcommittees to address communications and data collection, the work of these committees is not well defined nor was it evaluated as part of the Year 5 Evaluation Project.

In terms of sustainability of this FASD initiative, evidence from the Provincial Evaluation of Alberta’s FASD Service Networks and other Year 5 Evaluation reports suggest FASD project partners do not have a shared understanding of what success means for the FASD population, or how it should be measured. The reports identified that outcomes for the FASD 10-year Strategic Plan were often poorly defined and some measures were considered to be unrealistic for the FASD population. As stakeholder engagement is a key characteristic of network governance, findings from evaluation questions related to Outcome #7 are presented next.

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Stakeholder Engagement

Evaluation Questions: What mechanisms has the FASD-CMC implemented to engage stakeholders in strategic planning activities? What opportunities have been available for stakeholders to engage in networking and information sharing?

Methodology: Document review; interviews with stakeholders.

Key Findings: The CMC engages stakeholders in strategic planning at the provincial scale, while the Networks engage their stakeholders in needs assessment and business planning at the local scale. The CMC develops an annual Strategic and Operational Plan in consultation with its stakeholders. Since 2007, the CMC’s Operational Program Review Subcommittee reviews its Program Operating Grant Policies in consultation with stakeholders. These policies provide guidance and structure to the development of annual Network business plans, which are reviewed by the subcommittee as part of its grant application process. The Provincial Evaluation of Alberta’s FASD Service Networks found that 10 of the 12 Networks have conducted formal needs assessments with their stakeholders since 2007. Four of the Networks reported conducting their business planning in a collaborative manner that included stakeholders and broader community members. Mechanisms to engage stakeholders in strategic planning activities include meetings, and gathering input from partners and researchers.

Research and Evaluation

Evaluation Questions: Have research, leading practice, and monitoring and evaluation informed FASD strategic planning, prevention activities, and programming? Have the efforts of the FASD-CMC resulted in increased availability to FASD-related data locally and provincially? Establish an inventory of Alberta-based FASD research and researchers covering all four pillars of basic, clinical, population, and health services to provide a baseline measurement for research capacity in Alberta. Are there indications that evidence is changing/influencing FASD policies and practice?

Methodology: There are no direct measures for this outcome. A document review, focus groups with the CMC, the Networks, and PCAP members, and interviews with FASD assessment and diagnostic clinic managers were used to compile the data.

Key Findings: Participants reported that the CMC has formed strong working relationships with researchers who have expertise in FASD and that it uses results from research evaluation studies (with an emphasis on Alberta studies) to inform strategic planning. The Networks use information from local

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Outcome #6: Basic and applied research findings, including those from monitoring and evaluation systems, are used to inform FASD strategic planning, FASD prevention activities, and FASD related programming.

Outcome #7: Mechanisms are in place to facilitate and encourage stakeholder engagement in the FASD-CMC strategic planning process, as well as to provide stakeholder opportunities for networking and information sharing.

needs and gap assessments, and results from local research and evaluations to inform their strategic planning and funding allocation decisions. However, sharing of research and best practice amongst Networks occurs infrequently and often informally. Information about research and evaluation is primarily received through watching the Learning Series videos posted on the CMC website.

Regular monitoring and evaluation is used to inform the PCAP program. PCAP members noted that while there have been increased training and information sharing opportunities, the research and best practice available for PCAP mentors are often theoretical, and not practical enough for mentors to apply to their practice. Clinic members noted that a strong multi-disciplinary structure has developed, with a corresponding increase in services across FASD clinics, where there are more patients seen, and importantly more adults seen. While clinic members recognize the importance of utilizing and informing research, they noted that their busy schedule limits the extent to which they are able to do this. Online professional development was reported as an effective dissemination activity, as was the online database, although it is currently available only for PCAP. Videoconferencing was identified as an effective medium for collaboration, and helpful in overcoming geographic barriers.

The inventory of Alberta-based FASD research indicates growth in research accomplishments, most of which have occurred in the clinical pillar, followed by the health, population, and basic pillars. A large portion of the clinical research is community-based fieldwork, which connects research to community-based programs and services. Health research has evaluated early intervention and support services tailored for individuals and families affected by FASD. Population research has grown to provide reliable data on FASD cost, prevalence, and prevention in Alberta, informing strategic planning. Basic research in the past five years has seen an increase in brain imaging research, which is important to developing an increased understanding about FASD.

Social Return on Investment of Alberta’s FASD Service Networks

In addition to the seven outcomes identified in the FASD 10-Year Strategic Plan, the Year 5 Evaluation added two more outcomes related to assessing the social return on investment (SROI) of Alberta’s FASD Service Network Program by estimating the potential impact of the Networks on secondary disabilities associated with FASD. These include: crime, homelessness, mental health problems, and school disruption (for children) or unemployment (for adults).

It is important to note that this is not an assessment of value for money of the program, as the analysis does not consider all economic benefits associated with the Networks, such as the direct benefit to those experiencing FASD, their caregivers, any preventative benefits, or benefits from ameliorating secondary disabilities associated with FASD. The required data for a thorough and valid assessment of economic benefit is currently unavailable.

Evaluation Questions: Is there evidence of a reduction in secondary disabilities associated with FASD and their impact on Albertans? Has the cost of FASD to Albertans been reduced?

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Outcome #8: Secondary disabilities or adverse outcomes associated with FASD and their impact on Albertans is reduced. Outcome #9: The cost of FASD to Albertans is reduced.

Methodology: An exploratory cost benefit analysis approach was used, where outcomes were monetized to compare the difference between benefits and costs using available information and data at the time of this analysis. Limitations: Limited data was available. No data was available to inform the effectiveness of the Networks on secondary disabilities. The estimates of the effectiveness used in this analysis varied from 40% to 80%; however the actual effectiveness rate of the Networks is not known.

Key Findings: Corresponding to effectiveness rates ranging from 40 to 80%, the Networks were estimated to reduce the following number of occurrences: school disruption among children, between 187 and 281 occurrences; adults being unemployed, between 144 and 289; crimes committed, between 297 and 593; mental health problems, between 456 and 930, and being homeless, between 74 and 148. The total gross monetary benefits of reducing these occurrences range from $8.87 to $17.73 million per year with annual program costs estimated at approximately $12.6 million.

What these results show is that the economic and social burden associated with secondary disabilities is significant and there is an economic opportunity to reduce the resource burden on already constrained social resources and programs. Programs that are effective at not only ameliorating secondary disabilities, but also are effective in prevention, are likely to be cost effective. However, until data measuring the effectiveness of these programs are collected and made available, the full economic value of these programs cannot be demonstrated.

Conclusions

Following are the conclusions drawn based on the key findings from the FASD Year 5 Evaluation.

Awareness and Prevention - Outcome #1a: Baseline data has been collected to measure whether or not there has been an increase in understanding among Albertans that alcohol use during pregnancy can lead to FASD, FASD can be prevented, and FASD prevention is a shared responsibility. Going forward, the CMC is well positioned to measure a change in FASD awareness and understanding among Albertans.

Awareness and Prevention - Outcome #1b: The effectiveness of the PCAP program is a useful proxy to measure if alcohol use among women at-risk is reduced, and the program is a good example of the wraparound service model needed to support reduction of alcohol among woman at-risk of using alcohol while trying to get pregnant or during pregnancy.

Assessment and Diagnosis - Outcome #2: The FASD 10-Year Strategic Plan has successfully increased the number of clinics in Alberta, and assessments by multidisciplinary teams associated with the Networks have increased from 129 to 401 per year from 2008 to March 2011. In addition, all teams are following Canadian guidelines for standardized procedures and diagnosis.

Supports for Individuals and Caregivers – Outcome #3: The strategic plan has created a framework to address service coordination at three scales (system/CMC level, agency/Network level, and client/family level). The literature identifies the need to shift the purpose of assessment from diagnosis to intervention, and to apply an integrated lifespan approach to providing wraparound services where key caseworkers and mentors assist clients and caregivers with accessing coordinated services. Clinics need to be funded to collect data linking diagnosis to service areas in order to determine if recommended service targets are being met.

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Training and Education - Outcome #4: There is evidence that training and education resources are based on research and leading practices, and that they are being accessed by service providers and caregivers. However, Networks need funding to support targeted access to training and education for service providers and caregivers in their region, and need to evaluate the effectiveness of these resources using standardized methods for data collection.

Strategic Planning – Outcome #5, and Stakeholder Engagement – Outcome #7: A network governance model is being used to support Alberta’s FASD Service Network Program. The CMC and most of the Networks are actively engaging their stakeholders in their strategic planning processes. The CMC has established a subcommittee to oversee Network operations and funding and has successfully developed the management tools needed to oversee Network operations and accountability at both the provincial and local scales, based on best practices and continuous improvement. Subcommittees are needed to oversee collaboration, research and evaluation, and knowledge mobilization (training and education), with management tools developed to measure their effectiveness. The Networks identified that outcomes for the FASD 10-year Strategic Plan were often poorly defined and some measures were considered to be unrealistic for the FASD population. To address issues of sustainability, FASD partners must develop a shared understanding of what success means for both the FASD population and the Networks, and how these outcomes should be measured to demonstrate the effectiveness and efficiency of this model of delivery.

Research and Evaluation – Outcome #6: There is evidence that research, leading practice, and monitoring and evaluation has informed FASD strategic planning, prevention activities, and programming, and an inventory of research has been developed. Networks, however, need funding to participate in research, as fieldwork and standardized data collection are essential if research is to inform and influence policies and practice.

Social Return on Investment – Outcomes #8 and #9: The evidence suggests that programs, such as Alberta’s FASD Service Network Program, that are effective at both ameliorating secondary disabilities and in prevention are likely to be cost effective. However, all economic benefits associated with the Networks and data measuring the effectiveness of these programs must be collected and made available in order to demonstrate the full economic value of these programs. The required data for a thorough and valid assessment of economic benefit is currently unavailable.

Issues identified in the conclusions relating to assessment, service provision, outcomes, data collection and research, funding, and sustainability, are addressed in the recommendations.

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Recommendations

These recommendations are made to address key policies and practices needed to support individuals affected by FASD in Alberta, and continuous improvement of the Alberta FASD Network model that has developed over the last five years as a direct result of the Government of Alberta’s FASD 10-Year Strategic Plan.

1. Provide clients with assessment for intervention and wraparound services supported by a mentor system: Provide clients with services based on assessment for intervention rather than diagnosis. Develop wraparound services, supported by a mentor system, that facilitate the provision of a continuum of supports and services through the lifespan of FASD clients based on principles of participation and quality of life with planned transitions.

2. Define Sustainability: Clearly define the scope of the FASD Service Network Program by developing a shared understanding among the CMC, Networks, and other stakeholders of what sustainability means within the context of FASD, both for the population directly affected by FASD and for the delivery system that provides them with supports and services.

3. Clarify outcomes: Examine current FASD 10-Year Strategic Plan outcomes in light of this shared understanding of sustainability. Articulate clear, measurable outcomes for individuals affected by FASD (client outcomes) and for the FASD delivery model (system outcomes) that demonstrate system effectiveness and efficiency.

4. Develop a data collection model: Identify indicators and develop data collection templates. Provide funding to the Networks to support consistent data collection that is available to all stakeholders working collaboratively to achieve outcomes. Fund the Networks to participate in research and evaluation projects in order to support continuous, reliable data collection.

5. Further develop CMC governance structures: Following the model of the CMC’s Operational Program Review subcommittee, develop the other CMC subcommittees to oversee stakeholder engagement and collaboration (participation in strategic planning), research and evaluation (participation in research and data collection), and knowledge mobilization (participation in training and education). Develop management tools for each domain to support continuous improvement and standardization based on research and best practices.

6. Improve the CMC funding model: Support Network stability by providing core operating funding on a three-year cycle based on achieving annual objectives described in Network business plans. Recognize that collaboration, knowledge mobilization (training and education), and research and evaluation are core functions of a network governance model that require funding at both the provincial and local scales. Associated costs should be clearly itemized and become an integral part of the CMC funding model.

7. Increase access to the Alberta FASD Service Network Program services: Increase funding in order to reach targets set for Prevention and Awareness, Assessment and Diagnosis, and Supports for Individuals and Caregivers, as described in the FASD 10-year Strategic Plan.

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Year 5 Evaluation Research Reports The following Year 5 Evaluation reports were prepared and completed in 2012 for the Alberta Centre for Child, Family and Community Research and are available at fasd.alberta.ca:

Outcome 1a: Dr. Cecilia Bukutu, Tara Hanson, MACT, and Dr. Suzanne Tough

Outcome 1b:Dr. William Pelech, Dr. Jacqueline Pei, Dr. Cheryl Poth, and the University of Alberta ACCERT Evaluation Team Members.*

Outcome 2: Dr. Cheryl Poth, Dr. Jacqueline Pei and ACCERT

Outcome 3: Dr. Gail Andrew, MDCM FRCP (C)

Outcome 4: Michelle Anderson-Draper MSc, CE

Outcome 5: Question 5a: Michelle Anderson-Draper; Questions 5b, c, and d: Dr. Cheryl Poth,

Dr. Jacqueline Pei and ACCERT; Question 5e: Susan Abells

Outcome 6: Dr. Cheryl Poth, Dr. Jacqueline Pei and ACCERT

Outcome 7: Michelle Anderson-Draper MSc, CE

Outcomes 8 and 9: Institute of Health Economics: Dr. Thanh Nguyen, Dr. Jessica Moffatt, Dr. Anderson Chuck, Dr. Philip Jacobs, Dr. Egon Jonsson.

Lived Realities – Realistic Outcomes: Teresa O’Riordan, Executive Director, Northwest Central Alberta FASD Service Network

* The University of Alberta’s Alberta Clinical and Community-based Evaluation Research Team (ACCERT) included the following student members: David St. Arnault, Jenelle Job, Ellis Chan, Wence Leung, Sukhpreet Tamana, Kendra McCallum, Laura Gould, Virginia Tze, Katy Wyper, and Erin Atkinson.

Other References Cited

Baugh L, Rasmussen C, Andrew G, Pei J. Interventions recommended after FASD assessment. The International Society for the Study of Behavioral Development 22nd Biennial Meeting. Edmonton, AB.2012.

Brodeur K, Pei J, Aguillon-Piojo L, Mallon B, Kasper R, Andrew G. Prenatal Alcohol Exposure: Changes in Face and Growth Over Time. Paper presented at: 5th National Biennial Conference on Adolescents and Adults with FASD: It’s a Matter of Justice2012; Vancouver, BC.

Denys K, Rasmussen C. Quality of Life and Family Stress in Children with Prenatal Alcohol Exposure and Fetal Alcohol Spectrum Disorder. Paper presented at: International Society for the Study of Behavioural Development 2012 Biennial Meeting2012; Edmonton, AB.

Human Services (2012). Alberta recognizes international fetal alcohol spectrum disorder awareness day. Government of Alberta, Information Bulletin. August 24, 2012. http://alberta.ca/acn/201208/328665963B8C4-D4C1-6862-8858308ABFECF80D.html

Provincial Evaluation Report of Alberta FASD Service Networks (March 30, 2012) was coordinated by KPMG LLP and prepared for the CMC.

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Stade B, Ali A, Bennett D, et al. The burden of prenatal exposure to alcohol: Revised measurement of cost.The Canadian Journal of Clinical Pharmacology. 2009;16(1):e91-e102.

Streissguth AP, Barr HM, Kogan J, Bookstein FL. Understanding the occurrence of secondary disabilities in clients with fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE): Final report to the Centers for Disease control and Prevention. Seattle: University of Washington, Fetal Alcohol and Drug Unit.;1996.

Thanh N, Jonsson E. Costs of fetal alcohol spectrum disorder in Alberta, Canada. Canadian Journal of Clinical Pharmacology. 2009;16:80-90.

For Further Information about the Year 5 Evaluation of The Government of Alberta’s FASD 10 Year Strategic Plan, please contact:

Tara HansonDirector of Knowledge and Partnership DevelopmentAlberta Centre for Child, Family and Community Research601, 9925 - 109 StreetEdmonton, AlbertaT5K 2J8PH: 780-408-8730Fax:  780-944-8637thanson@research4children.com

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Table of Contents

About FASD.................................................................................................................................................................................... iiA Brief History of Alberta’s Response to FASD............................................................................................................ iiiAlberta’s FASD 10-Year Strategic Plan............................................................................................................................. iiiYear 5 Evaluation of the FASD Plan................................................................................................................................... iiiRecommendations.................................................................................................................................................................. xviYear 5 Evaluation Research Reports.............................................................................................................................xvii

Outcome 1a:............................................................................................................................................................ 4Acknowledgements....................................................................................................................................................................5Executive Summary...................................................................................................................................................................6Table of Contents........................................................................................................................................................................ 8Research Report: Outcome 1a...............................................................................................................................................9

Outcome 1b.......................................................................................................................................................... 30Acknowledgements.................................................................................................................................................................31Executive Summary................................................................................................................................................................ 32Table of Contents..................................................................................................................................................................... 35Research Report: Outcome 1b............................................................................................................................................36

Outcome 2............................................................................................................................................................ 91Acknowledgements.................................................................................................................................................................92Executive Summary................................................................................................................................................................ 93Table of Contents..................................................................................................................................................................... 95Research Report: Outcome 2..............................................................................................................................................96

Outcome 3:......................................................................................................................................................... 108Executive Summary..............................................................................................................................................................109Table of Contents...................................................................................................................................................................111Research Report: Outcome 3............................................................................................................................................112

Outcome 4:......................................................................................................................................................... 129Acknowledgements..............................................................................................................................................................130Executive Summary..............................................................................................................................................................131Table of Contents...................................................................................................................................................................133Research Report: Outcome 4............................................................................................................................................134

Outcome 5:......................................................................................................................................................... 185Acknowledgements..............................................................................................................................................................186Executive Summary..............................................................................................................................................................187Table of Contents...................................................................................................................................................................189Research Report: Outcome 5, Evaluation Question 5A........................................................................................190

Outcome 5:......................................................................................................................................................... 205Executive Summary..............................................................................................................................................................206Table of Contents...................................................................................................................................................................208Research Report: Outcome 5, Evaluation Question 5b.........................................................................................209

Outcome 5:......................................................................................................................................................... 216Executive Summary..............................................................................................................................................................217Table of Contents...................................................................................................................................................................218Research Report: Outcome 5, Evaluation Question 5C.........................................................................................219

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Outcome 5:......................................................................................................................................................... 228Table of Contents...................................................................................................................................................................229Research Report: Outcome 5, Evaluation Question 5d.........................................................................................230

Outcome 5:......................................................................................................................................................... 231Executive Summary..............................................................................................................................................................232Table of Contents...................................................................................................................................................................235Research Report: Outcome 5, Evaluation Question 5e.........................................................................................236

Outcome 6:......................................................................................................................................................... 267Executive Summary..............................................................................................................................................................268Table of Contents...................................................................................................................................................................270Research Report: Outcome 6, Evaluation Questions 6a, 6c................................................................................271

Outcome 6.......................................................................................................................................................... 283Executive Summary..............................................................................................................................................................284Table of Contents...................................................................................................................................................................286Research Report: Outcome 6, Evaluation Questions 6b.......................................................................................287

Outcome 6:......................................................................................................................................................... 297Executive Summary..............................................................................................................................................................298Table of Contents...................................................................................................................................................................300Research Report: Outcome 6, Evaluation Question 6d.........................................................................................301

Outcome 6:......................................................................................................................................................... 338Executive Summary..............................................................................................................................................................339Table of Contents...................................................................................................................................................................341Research Report: Outcome 6, Evaluation Question 6e.........................................................................................342

Outcome 7:......................................................................................................................................................... 350Acknowledgements..............................................................................................................................................................351Executive Summary..............................................................................................................................................................352Table of Contents...................................................................................................................................................................354Research Report: Outcome 7............................................................................................................................................355

Outcomes 8 and 9:........................................................................................................................................... 372Executive Summary..............................................................................................................................................................373Table of Contents...................................................................................................................................................................376Research Report: Outcomes 8 and 9.............................................................................................................................377

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Outcome 1a:Albertans understand that alcohol use during pregnancy can lead to FASD, that FASD can be prevented and that FASD prevention is a shared responsibility.

Evaluation Question 1a:Has there been an increase in understanding among Albertans that: alcohol use during pregnancy can lead to FASD; FASD can be prevented; and FASD prevention is a shared responsibility?

Prepared by:

Cecilia Bukutu, MPhil, PhD

Tara Hanson, MACT

Suzanne Tough, MSc, PhD

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Acknowledgements

The Alberta Centre for Child, Family and Community Research (The Centre) would like to acknowledge the work and efforts of the University of Alberta Population Research Lab, who implemented the survey.

Bukutu, C., Hanson, T., & Tough, S. Fetal Alcohol Spectrum Disorder Awareness Campaign Project Final Report prepared for The Alberta Centre for Child Family and Community Research, 2012.

Related MaterialsTough S, Clark M, Hicks M, Clarren S. Attitudes and Approaches of Canadian providers to preconception counseling and the prevention of Fetal Alcohol Spectrum Disorders (FASDs) JFAS Int 2005;3:e3

Tough, S. Clarke, M., Hicks, M. Knowledge and attitudes of Canadian Psychiatrists regarding fetal alcohol; spectrum disorder. The Canadian Child and Adolescent Psychiatry Review. 2003;12(3):64-71.

Additional Copies

Questions about this survey or requests for copies of this report may be directed to

Tara Hanson, Director of Knowledge and Partnership Development(780) 408-8730 or thanson@research4children.com.

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Executive Summary

Background

The purpose of this report was to assess Albertans’ awareness of Fetal Alcohol Spectrum Disorder (FASD). A telephone survey was conducted, asking Albertans questions in the following categories: general FASD knowledge (e.g. Do you think FASD can be prevented?), contact with FASD (e.g. Do you know anyone who you think might have FASD?), support (e.g. Do you think a woman should be supported by others not to drink while pregnant?), and behaviour (e.g. If you saw a pregnant woman that you knew drinking alcohol, would you tell her that using alcohol during pregnancy might harm the baby?).

The telephone survey consisted of ten questions, and 1203 adult Albertans responded. Participants were equally distributed between Edmonton, Calgary, and other areas in Alberta, and there was an equal distribution of males and females. Respondents also had similar demographic characteristics when compared to the general Albertan population.

Key Results

85.7% of respondents have heard of FASD. Over 96% of Albertans who have heard about FASD know that alcohol use during pregnancy

causes FASD, that FASD can be prevented, and that the best way to prevent FASD is by not using alcohol while trying to get pregnant and during pregnancy.

14.3% of respondents had not heard of FASD. These respondents were more likely to be male (62.8%), between the ages of 18 and 44 years, non-Caucasian, and born outside of Canada.

A significant proportion of Albertans know someone with FASD (40.1%) and/or someone who cares for an individual with FASD (39.1%).

Respondents most likely to know a person with FASD were: aged between the ages of 25 to 34 years (45.0%) and 55 to 64 years (46.2%), employed, and living outside of Calgary (either Edmonton or other areas of Alberta).

Respondents likely to know someone who cares for an individual with FASD were female, between 25 and 34-years-old, employed, Canadian born, and living outside of Calgary.

Most respondents (89%) reported that they would tell a pregnant woman they knew who was drinking alcohol, that using alcohol during pregnancy may harm the baby.

Those most likely to tell a woman were: female, between 25 and 34-years-old, living outside of Calgary and employed.

Nearly half (49.7%) of the respondents reported that they would tell a pregnant woman they did not know, who was drinking alcohol, that using alcohol during pregnancy might harm the baby.

Those most likely to tell a woman were: female, between 25 and 34-years-old, living outside of Calgary, with an annual household income below $40,000/year.

Almost all participants responded that they believed a woman should be supported by others not to drink while pregnant, regardless of whether or not they had heard of FASD (98.6%) or not (95%).

When broken down by groups (healthcare provider, partner/spouse, family, friends, community, or government), the woman’s family and partner/spouse were identified most often as the main sources of support, both by respondents who had and had not heard of FASD.

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Healthcare providers, government, and community were all implicated by many respondents (60+%) as having roles in supporting pregnant women not to drink.

Recommendations

To address some of the limitations related to data collection, future surveys should include a wider range of individuals: those under the age of 18, non English-speaking Albertans, individuals who only own cell phones or who do not have a telephone. For a better understanding of the needs of caregivers, future studies could also include questions about caregivers’ needs for and access to information and support.

The findings regarding supporting pregnant women not to drink suggest that Albertans recognize that collective efforts are required to support women at risk of an alcohol exposed pregnancy. This finding also suggests that health care providers, communities, and government should feel empowered to take a leading role in the implementation of effective, accessible, and respectful supports for women at risk. Additionally, those working in agencies and programs where they may encounter women at risk of drinking during pregnancy should have training that enables them to identify these women and help them by providing supports or referrals.

In this study, many Albertans responded that they would be willing to discuss alcohol use during pregnancy with women they do not know, which may reflect the care and concern Albertans have for those in their communities. This finding is further evidence that policy and decision makers can be reassured that actions taken to support women would be valued by Albertans.

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Table of Contents

Outcome 1a:.................................................................................................................................................................................. 8Evaluation Question1a............................................................................................................................................................. 8

Introduction and Background...............................................................................................................................................8Methods.......................................................................................................................................................................................... 8Demographics............................................................................................................................................................................10Respondents’ Knowledge/Awareness about FASD..................................................................................................11

General FASD Knowledge..................................................................................................................................................... 11Contact with FASD................................................................................................................................................................... 13Support......................................................................................................................................................................................... 17Behaviour.................................................................................................................................................................................... 21

Discussion................................................................................................................................................................................... 25Limitations.................................................................................................................................................................................. 26Recommendations...................................................................................................................................................................27References................................................................................................................................................................................... 28

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Albertans understand that alcohol use during pregnancy can lead to FASD, that FASD can be prevented, and that FASD prevention is a shared responsibility.

Research Report: Outcome 1a

Outcome 1a:

Evaluation Question

1: Has there been an increase in understanding among Albertans that: alcohol use during pregnancy can lead to FASD; FASD can be prevented; and FASD prevention is a shared responsibility?

Introduction and Background

Drinking alcohol is a common social activity for many women. In a Canadian Addiction Survey, 76.8% of the female respondents reported drinking in the past year.1 Alcohol use during pregnancy can result in serious life-long health outcomes for the baby. The Public Health Agency of Canada2 warns that there is no safe amount or safe time to drink alcohol during pregnancy.

Outcome 1a of the Government of Alberta FASD 10 Year Strategic Plan addresses the issue of Albertans awareness of FASD.

Outcome 1a is: Albertans understand that alcohol use during pregnancy can lead to FASD, that FASD can be prevented and that FASD prevention is a shared responsibility.

Evaluation Question 1a: Has there been an increase in understanding among Albertans that: alcohol use during pregnancy can lead to FASD; FASD can be prevented; and FASD prevention is a shared responsibility?

In 2003, Alberta formed a Fetal Alcohol Spectrum Disorder Cross-Ministry Committee (FASD-CMC) with a mandate to be the primary driving force behind the delivery of FASD programs offered by the provincial government. This report is intended to address Evaluation Question 1a by providing a measurement of the FASD-CMC’s awareness and prevention efforts. Specifically, the results presented in this report establish a baseline measure for Outcome 1a of the Strategic Plan.

Methods

The Centre submitted research questions to the Population Research Laboratory (PRL) at the University of Alberta for inclusion in the 2011 Alberta Survey. The Alberta Survey is an annual telephone survey, which explores public opinion on a wide range of public policy concerns. The PRL conducted the 2011 Alberta Survey from May 25 to June 22, 2011. 1203 Albertans over the age of 18 participated, with approximately equal representation from men and women, and the same number of individuals from Calgary, Edmonton and the rest of the province. The overall response rate for this survey was 26.1%.

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The Population Research Lab provided the survey data to The Centre for analysis which was conducted by their Child and Youth Data Laboratory. This report includes responses to questions as well as demographic information about the population surveyed. It serves as a baseline measure to define the extent to which Albertans understand that alcohol use during pregnancy can lead to FASD, that FASD can be prevented and that FASD is a shared responsibility.

The Centre submitted the following questions for inclusion in this survey:

General FASD Knowledge

1. Have you heard of Fetal Alcohol Spectrum Disorder or FASD before?

2. Can alcohol use during pregnancy cause FASD?

3. Do you think FASD can be prevented?

4. What is the best way to prevent FASD?a. No alcohol use in the first three months of pregnancy b. No alcohol use in the first six months of pregnancy c. No alcohol use in the last three months of pregnancy d. No alcohol use during pregnancy or while trying to become pregnant

Contact with FASD

5. Do you know anyone who provides care for someone with FASD or who you think has FASD?

6. Do you know anyone who you think might have FASD?

Support

7. Do you think a woman should be supported by others not to drink while pregnant?

8. Who should be involved in encouraging a woman not to drink alcohol during pregnancy;a. the woman's health care provider b. the woman's partner or spouse c. the woman's family d. the woman's friends e. the community f. the government

Behaviour

9. If you saw a pregnant woman that you knew drinking alcohol, would you tell her that using alcohol during pregnancy might harm the baby?

10. If you saw a pregnant woman that you DID NOT know drinking alcohol, would you tell her that using alcohol during pregnancy might harm the baby?

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The following definition of FASD was provided to survey participants who had not heard of FASD, did not respond or responded with ‘I don’t know’ to the question have you heard of FASD before?

“FASD is completely preventable. It can occur in an individual whose mother drank alcohol during pregnancy. Alcohol use during pregnancy can lead to babies born with permanent disabilities. FASD can result in reduced IQ, speech and vision impairment, hyperactivity, behavior and learning problems, and physical malformations.”

Descriptive statistics of responses to survey questions were calculated. Respondents were grouped according to various characteristics and compared to respondents in other groups. This was done to see if certain characteristics made respondents more or less likely to give a certain answer. Respondents were compared based on the following demographic characteristics:

Gender (male vs. female)

Age (various age-groups)

Area of residence (Edmonton, Calgary vs. Other Alberta)

Place of origin (Canadian born vs. Born outside Canada)

Religious affiliation (those who self-identified as religious vs. those who did not)

Highest Level of Education (completed high school or less vs. completed further education)

Employment status (employed (full or part time) vs. unemployed/retired)

Annual household income (high-income vs. low-income households)

The number of participants who responded to particular question items varies. That is, not every participant answered every question item. Question item response percentages are calculated by dividing the number of respondents who indicated a specific response category divided by the total number of respondents who answered the question item.

Demographics

In a survey of this type, only part of the total population is surveyed. The information collected is then used to make inferences about the whole population. To ensure that the current survey is providing a reasonably reliable picture of the whole Albertan population, information describing the respondents to the survey should closely match data from the Canadian Census when the two are compared. Census data is collected from every unit in a population making it truly representative of the whole population. In the following section the current survey information is presented to show how comparable the respondents were to the Albertan population based on the most recent Canadian census (2006). Certain characteristics of respondents from the Alberta Survey were compared to Albertan population census information. Generally respondents had similar demographic characteristics to the general Albertan population (see Appendix A). Therefore, the results of this report likely reflect the knowledge and attitudes of Albertans.

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Respondents’ Knowledge/Awareness about FASD

General FASD Knowledge

Survey respondents were asked

1) Have you heard of Fetal Alcohol Spectrum Disorder or FASD before?

Where respondents had not heard about FASD they were provided information regarding what FASD was and were not asked any further questions in the general FASD knowledge section. They were however, asked other FASD related questions later in the survey.

Of the Albertan adults who participated in the survey, 85.7% (n=1028) were aware of what FASD is, where as 14.3% (n=172) had not heard of FASD (Figure 1).

Figure 1. Have you heard of Fetal Alcohol Spectrum Disorder or FASD before?

86%

14%

Heard of FASD Not heard of FASD

Characteristics of respondents who had not heard of FASD.

Respondents who had not heard of FASD were different to respondents who had heard about FASD (Table 1). Compared to respondents who had heard about FASD, those who had not heard of FASD were more likely to be male (62.8%), to reside in Calgary (48%), to have been born outside Canada (47%), to be younger (aged between 18 and 44 years)(48%), to have children (42%), and to be non-Caucasian (36%).

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Table 1. Characteristics of respondents who had heard of FASD compared to those who hadn’t heard of FASD.Characteristic Of those who had heard of

FASD (%)(N=1028)

Of those who had not heard of FASD (%)(N=172)

Age 18-44 years 35.8 47.945 and older 64.2 52.1GenderMale 47.9 62.8Female 52.1 37.2Ethnic backgroundCaucasian 92.4 63.7Non-Caucasian 7.6 36.2ChildrenYes 34.5 42.4No 65.5 57.6ReligionNo Religion 27.6 20.6Not Christian 6.8 18.1Christian 65.6 61.2Canadian BornYes 86.1 52.9No 13.9 47.1

The rest of this section focuses on the respondents who had heard about FASD (86%, n=1028) and their responses to the following general knowledge questions about FASD;

2) Can alcohol use during pregnancy cause FASD?

3) Do you think FASD can be prevented?

4) What is the best way to prevent FASD?a. No alcohol use in the first three months of pregnancy b. No alcohol use in the first six months of pregnancy c. No alcohol use in the last three months of pregnancy d. No alcohol use during pregnancy or while trying to become pregnant

Of respondents who were aware of FASD, 99% knew that alcohol use during pregnancy causes FASD. The same percentage knew that FASD is preventable (99%).

When asked the best way to prevent FASD, 96% of respondents who were aware of FASD selected the best answer, which was: no alcohol use during pregnancy or while trying to become pregnant, followed by 2.1% who selected ‘no alcohol used in the first 3 months of pregnancy, 0.9% who selected no alcohol use in the first 6 months of pregnancy and lastly 0.1% who selected no alcohol use in the last 3 months of pregnancy (Figure 2). Respondents (4%) who did not select the best answer were predominantly male

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(62%). The 2.1% of respondents who selected the answer ‘no alcohol used in the first 3 months’ were mostly (67%) male.

Figure 2. What is the best way to prevent FASD?

2.1 0.9 0.7

96.3

0

20

40

60

80

100

No alcohol use in thefirst 3 months of

pregnancy

No alcohol use in thefirst 6 months of

pregnancy

No alcohol use in thelast 3 months of

pregnancy

No alcohol use duringpregnancy or whiletrying to become

pregnant

% o

f res

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Contact with FASD

Both respondents who had heard of and not heard of FASD (n=1200) were asked the following questions.

5) Do you know anyone who you think might have Fetal Alcohol Spectrum Disorder?

6) Do you know anyone who provides care for someone with FASD or who you think has FASD?

Of the respondents that had heard of FASD, just over 40% reported knowing someone who has or they think might have FASD. Almost the same number of respondents knew someone who provided care for an individual who has or might have FASD (39.1%) (Figure 3).

Of the respondents who had not heard of FASD, 6.5% reported knowing someone who has or they think might have FASD, and 7.1% reported knowing someone who cares for an individual who has or might have FASD (Figure 3).

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Figure 3. Do you know anyone who you think might have Fetal Alcohol Spectrum Disorder (FASD)? Do you know anyone who provides care for someone with FASD or who you think has FASD?

40.1 39.1

6.5 7.1

0

10

20

30

40

50

Know someone with FASD Know anyone who cares forsomeone with FASD

% o

f res

pond

ents

Heard of FASD Not heard of FASD

Responses from respondents who had heard about FASD were analyzed to see if there were differences in responses based on certain characteristic such as gender.

Gender

No gender differences were reported regarding whether respondents knew a person with FASD or not (p=0.19). Females were more likely to report knowing anyone who provided care to a person with FASD (45%) than males (32.6%) (Figure 4).

Figure 4. Respondents who knew anyone who cared for someone with FASD by gender

32.6

45.0

0

10

20

30

40

50

Male Female

% o

f res

pond

ents

Gender

14

Age

Respondents in the age-groups 25-34 (45.0%) and 55-64 (46.2%) (Figure 5) were the most likely to know someone with FASD and to know anyone who cares for a person with FASD (45.8% and 44.2% respectively). Those aged 65+ were least likely to know anyone who has FASD (29.1%) and someone who cares for a person with FASD (24.8%) (Figure 5).

Figure 5. Respondents who knew someone with FASD or who cared for a person with FASD by age

40.0

45.0

39.341.0

46.2

29.1

34.8

45.8

40.7 40.1

44.2

24.8

0

10

20

30

40

50

60

18-24 25-34 35-44 45-54 55-64 65+

% o

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ents

Age in years

Know somoene with FASD

Know anyone who cares for someone with FASD

15

Region of residence

Fewer respondents in Calgary knew someone with FASD (32.2%) or anyone who cares for someone with FASD (32.2%) compared to respondents from Edmonton (41.6% and 41.4% respectively) and the rest of Alberta (42.8% and 45.8% respectively) (Figure 6).

Figure 6.Respondents who knew someone with FASD or who cares for a person with FASD by region of residence

41.4

32.2

45.8

41.6

32.2

42.8

0

10

20

30

40

50

Edmonton Calgary Other Alberta

% o

f Res

pond

ents

Area of residence

Know somoene with FASDKnow anyone who cares for someone with FASD

Born in Canada

Respondents born in Canada were more likely to know anyone who cared for someone with FASD 41% than respondents not born in Canada (27.3%).

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Employment

Respondents who were employed were more likely to know someone with FASD and someone who cares for a person with FASD (Figure 7).

Figure 7. Respondents who knew someone with FASD or who cared for a person with FASD by employment status

42.4

32.8

42.9

35.1

0

20

40

60

80

Employed Not employed/retired

% o

f Res

pond

ents

Employment status

Know someone with FASD

Know anyone who cares for someone with FASD

Support

All respondents (including those who had not heard of FASD (N=172)) were asked the following questions to gauge their views regarding support for pregnant women not to drink:

7) Do you think a woman should be supported by others not to drink while pregnant?

8) Who should be involved in encouraging a woman not to drink alcohol during pregnancy?

a) The woman’s healthcare provider (e.g. Doctor)

b) The woman's partner or spouse

c) The woman's family d) The woman's friends

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e) The community

f) Government

Most respondents believe that women should be supported by others not to drink while pregnant regardless of whether they had heard of FASD (98.6%) or not (95%).

Among respondents who had heard about FASD, the woman’s family (95.5%) was identified as the main group to be involved in encouraging a woman not to drink alcohol during pregnancy. Partner/spouse (93.4%), friends (89.7%), and health care provider (88.2%) were also viewed the as a key resource in terms of supporting women not to drink during pregnancy. The community (77.2%) and government (70.8%) were also identified as important resources/supports, but not to the same extent as family (including partners or spouses), friends, or healthcare providers.

Among respondents who had not heard of FASD (n=172), the pregnant woman’s partner/spouse (88%) and family (88%) were the two main sources of support selected, followed by health care provider (78%), friends (77%), government (62%), and community (60%) (Figure 8).

Figure 8. Who should be involved in encouraging a woman not to drink alcohol during pregnancy?

93.4 95.589.7 88.2

77.270.8

88.0 88.0

77.0 78.0

60.0 62.0

0

20

40

60

80

100

Partner/Spouse Woman's family Woman's friends Healthcareprovider

Community Government

% o

f res

pond

ents

Support group

Heard of FASD Not heard of FASD

Responses from respondents who had heard about FASD were analyzed to see if there were differences in responses based on certain characteristic such as gender.

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Gender

There were no significant differences by gender in respondents’ beliefs that the family and partner/spouse should be involved in encouraging a woman not to drink alcohol during pregnancy. Differences by gender existed for friends, health care providers, community, and government (Figure 9). More women than men believed that a pregnant woman’s health care providers (90.6% vs. 85.5%), the community (81% vs. 73%) and government (75.5% vs. 65.6%) should encourage a pregnant woman not to drink during pregnancy. While more men believed that a pregnant woman’s friends should encourage her not to drink during pregnancy.

Figure 9. Who should support a pregnant woman not to drink alcohol during pregnancy by gender?

92.5 94.698.2

85.5

73.0

65.6

94.2 96.491.9 90.6

81.075.5

0

20

40

60

80

100

Partner/Spouse Woman's family Woman's friends Healthcareprovider

Community Government

% o

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spon

dent

s

Support group

Male Female

Age

Differences existed by age for the responses to the question of who should be involved in encouraging a woman not to drink alcohol during pregnancy. Respondents aged 25-34 had the highest percentage of individuals that believed the health care provider (95%), community (91%) and government (85%) should be involved (Figure 10). Comparably, respondents 65-years-old and over had the least percentage of individuals who felt this way: 81%, 64%, and 57% respectively.

Within the age groups, the pattern of selection for who should be involved in encouraging pregnant women not to drink was similar; health providers were the most frequently selected, followed by community and then government. The exception was for young adults (ages 18-24) where respondents identified health care providers (89%), government (76%), and the community (70%).

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Figure 10. Who should support a pregnant woman not to drink alcohol during pregnancy by age?

89.194.7

89.7 89.2 87.380.8

69.6

90.887.4

77.973.8

64.3

76.1

84.777.7

73.7

65.6

57.0

0

20

40

60

80

100

18-24 25-34 35-44 45-54 55-64 65+

% o

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Age-group (years)

Healthcare provider Community Government

Employment status

Employed respondents were more likely to report the importance of the various support groups than unemployed respondents. The biggest difference between employed and unemployed respondents is observed where the support group is the ‘community.’ More employed respondents (81.4%) viewed the community as an important support for pregnant women than unemployed respondents (70%) (Figure 11).

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Figure 11. Who should support a pregnant woman not to drink alcohol during pregnancy by employment status?

95.7 96.492.7 90.0

81.474.9

89.594.1

84.5 85.0

70.063.8

0

20

40

60

80

100

Partner/Spouse Woman's family Woman's friends Healthcare provider Community Government

% o

f Res

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ents

Support group

Employed Unemployed

Behaviour

All respondents (including those who had not heard about FASD) were asked the following questions:

9) If you saw a pregnant woman that you knew drinking alcohol, would you tell her that using alcohol during pregnancy might harm the baby?

10) If you saw a pregnant woman that you DID NOT know drinking alcohol, would you tell her that using alcohol during pregnancy might harm the baby?

Among respondents who had heard about FASD, 89% said that if they saw a pregnant woman who they knew drinking alcohol, they would tell her that using alcohol during pregnancy might harm the baby. When it came to informing pregnant women who the respondents did not know, nearly half (49.7%) of the respondents would tell the woman of the potential harm to the baby. The findings among respondents who had not heard about FASD were similar, respondents indicated they would tell a woman who they knew (89%) and did not know (50%) that using alcohol during pregnancy might harm the baby.

Responses from respondents who had heard about FASD were analyzed to see if there were differences in responses based on certain characteristics such as gender.

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Gender

Regarding whether respondents would tell a woman (who they knew) who was pregnant and drinking alcohol, about the potential harm to the baby, women were slightly more likely to do so than men (91% vs. 86.6%) (Figure 12). Where the respondents did not know the pregnant woman drinking, more females (54.7%) than males (44.5%) were likely to inform the pregnant woman of the potential harm to the baby.

Figure 12.Respondents who would tell a pregnant woman drinking alcohol about the potential harm to the baby by gender

86.6

44.5

91.0

54.7

0

20

40

60

80

100

Respondent knew the pregnant woman Respondent DID NOT know the pregnantwoman

% o

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Male Female

Age

The majority (over 80%) of respondents regardless of age would tell a pregnant woman (who they knew) who was drinking alcohol that using alcohol might harm the baby. Young adults (ages 18-24) were most likely to do so whether they knew the woman (100%) or not (66.7%), while respondents over 65 were least likely to do so (80.7% and 42.4% respectively) (Figure 13).

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Figure 13. Respondents who would tell a pregnant woman drinking alcohol about the potential harm to the baby, by age

100.094.4

89.1 89.6 91.0

80.7

66.7

56.751.3 52.3

46.442.4

0

20

40

60

80

100

18-24 25-34 35-44 45-54 55-64 65+

% o

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ents

Age-group (years)

Knew the pregnant woman DID NOT know the pregnant woman

Region of residence

Compared to individuals living in Calgary (40.3%), respondents from Edmonton (54.3%) and the rest of Alberta (53.7%) were somewhat more likely to tell a pregnant woman they did not know, who was drinking, that alcohol use may harm the baby (Figure 14). No other differences in beliefs or attitude towards FASD were seen by area of residence.

Figure 14. Respondents who would tell a pregnant woman drinking alcohol about the potential harm to the baby, region of residence

54.3

40.3

53.7

0

20

40

60

Edmonton Calgary Other Alberta

% o

f Res

pond

ents

Area of residence

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Income

Respondents earning less than $40,000 were the most likely to tell a pregnant woman they did not know that alcohol use might harm the baby (61.5%). (Figure 15)

Figure 15. Respondents who would tell a pregnant woman who was drinking alcohol about the potential harm to the baby: differences by income

61.5

49.2 46.9

0

20

40

60

80

<$39,999 $40,000-$79,999 >$80,000

% o

f Res

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ents

Annual household income

Religion

Respondents with some religious background were more likely to tell a pregnant woman who was drinking alcohol that alcohol use may harm the baby, regardless of whether they knew the woman or not (Figure 16). No other differences by religion in responses to the FASD questions were observed.

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Figure 16. Respondents who would tell a pregnant woman who was drinking alcohol about the potential harm to the baby; differences by religious background

86.1

43.7

90.8

52.4

0

20

40

60

80

100

Respondent knew the pregnant woman Respondent DID NOT know the pregnant woman

% o

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ents

No religion Belong to a religious group

Discussion

The current survey provides contemporary data on Albertans’ knowledge and attitudes about alcohol consumption in pregnancy, its effects on the fetus, and their understanding of FASD. In the survey, 85.7% of respondents had heard about FASD, this finding is consistent with the results of a 2006 Canadian nation-wide survey commissioned by the Public Health Agency of Canada3 where 86% of 3,633 respondents reported having heard of FASD. Additionally, as in the Public Health Agency of Canada study,3 the current study found that more women than men had heard of FASD.

In the current survey, a disconcerting proportion of respondents had not heard of FASD (14.35%). Compared to the population of respondents who had heard about FASD, respondents who had not heard of FASD were more likely to be male, between 18 and 44 years of age, born outside of Canada, non-Caucasian and non-Christian. This shows population level gaps in FASD knowledge that exist within Alberta and provides information that is useful in the strategic planning process of FASD programs aimed at increasing awareness and education within the province.

Of respondents who were aware of FASD, almost all (99%) knew that alcohol use during pregnancy causes FASD and that it can be prevented (99%). There was a slightly lower level of knowledge regarding alcohol consumption at different stages of pregnancy, with 4% of respondents unable to select the correct answer of ‘no alcohol use during pregnancy or while trying to become pregnant’.

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Over 40% of respondents in the study knew someone with or they suspected had FASD, and 39% of respondents knew someone who cared for an individual with or they suspected had FASD. Respondents who knew someone with FASD were more likely to be between 55 and 64 years of age, employed and living outside of Calgary. Respondents, who knew anyone who cared for someone with FASD tended to be female, between 25 and 34 years of age, born in Canada, employed, and living outside of Calgary.

Evidence shows that a woman’s ability to create an environment conducive to a healthy pregnancy, such as changing her alcohol use, is influenced by the availability and access to adequate supports and services, and underlying factors such as poverty and violence.4 A pregnant woman’s ability to make healthy choices can be influenced by the actions of her partners and family members. In the current study, 96% of respondents believed that women needed to be supported by others not to drink while pregnant. The respondents selection of main supporters to be involved in encouraging women not to drink during pregnancy were in the following order; family, partner, spouse, friends, health care provider, community, and government.

Studies indicate that alcohol use can be influenced by social factors and the broader determinants of health including social norms and expectations. Multiple factors can influence alcohol use before and during pregnancy, including access to resources and social norms and expectations. In the current study, to gauge the acceptable social norms in relation to alcohol use during pregnancy, respondents were asked whether they would tell a pregnant woman using alcohol that alcohol might harm the baby. Where respondents knew the pregnant woman drinking alcohol they were more likely (89%) to tell the woman about the potential harm of alcohol to the baby, compared to those who did not know the pregnant woman (50%). Those least likely to tell a pregnant woman the potential harm to the baby were male, over 65 years old, residing in Calgary, earning more than $40,000 and non-religious.

Limitations

Limitations of the current study include: The survey was completed by telephone which may have led to under-representation of

respondents who do not own a telephone, or those that have a cell phone and not a landline. The survey was completed in English and not conducted in other languages. Although the survey used random sampling, resulting variation in survey demographics may

affect comparisons.

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Recommendations

1. While the current study provided detailed information about FASD awareness among adults in Alberta, determining FASD awareness among those under age 18 is important. This would provide information to further inform prevention strategies that reduce the likelihood of an alcohol exposed pregnancy as well as normalize alcohol abstinence among those who may become pregnant.

2. Given the relatively high proportion of people who know someone with FASD and/or know someone who cared for an individual with FASD, there is an opportunity to better understand, through future surveys, if the needs of caregivers for information and support are being met.

3. The finding that all elements of society have a role to play in supporting alcohol abstinence during pregnancy suggests that Albertans recognize that collective efforts are required to support women at risk of an alcohol exposed pregnancy. This finding also suggests that health care providers, communities, and government should feel empowered to take a leading role in the implementation of effective, accessible, and respectful supports for women at risk.

4. The finding that many Albertans would be willing to discuss alcohol use during pregnancy with women they do not know may reflect the care and concern Albertans have for those in their communities. This finding is further evidence that policy and decision makers can be reassured that actions taken to support women would be valued by Albertans.

5. While those who responded to the survey represented the Alberta Census data with respect to education, employment, marital status, and ethnicity, there remains an opportunity to better understand alcohol awareness among women who may be most highly at risk, (past experience in child welfare, poor educational attainment, exposure to abuse or violence, underemployed, women of childbearing age not using birth control).

6. The finding that Albertans believe that government agencies, health care providers, and communities share responsibility for mitigating risk for FASD suggests that those working in agencies and programs where women may be at risk of drinking during pregnancy should be trained to identify these women and be able to provide supports or referrals.

7. Future surveys should be made accessible to a wider range of people, including those who do not speak English, and those who do not have a land line or a cell phone.

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References

1. Ahmand N, Flight J, Singh VA, Poole N, Dell C. Canadian Addiction Survey (CAS): Focus on Gender Ottawa: Health Canada; 2008.

2. Sensible Guide to a Healthy Pregnancy: Government of Canada; 2011.3. Thanh NX, Jonsson E. Drinking alcohol during pregnancy: Evidence from Canadian community health

survey 2007/2008. Journal of Population Therapeutics and Clinical Pharmacology. 2010;17(2):e302-e307.

4. Thanh N, Jonsson E. Costs of fetal alcohol spectrum disorder in Alberta, Canada. Canadian Journal of Clinical Pharmacology. 2009;16:80-90.

5. Stade B, Ali A, Bennett D, et al. The burden of prenatal exposure to alcohol: Revised measurement of cost. The Canadian Journal of Clinical Pharmacology. 2009;16(1):e91-e102.

6. Stratton K, Howe C, Battaglia F, eds. Fetal Alcohol Syndome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: National Academy Press; 1996.

7. Environics Research Group. Alcohol use during pregnancy and awareness of fetal alcohol syndrome and fetal alcohol spectrum disorder: Results of a national survey Toronto: Public Health Agency of Canada; 2006.

8. Burgoyne W, Best Start Resource Centre. What we have learned: Key Canadian FASD awareness campaigns. Canada: Public Health Agency of Canada;2005.

9. Roberts G, Nanson J. Best practices: Fetal Alcohol Syndrome/Fetal alcohol effects and the effects of other substance use during pregnancy. Ottawa: Health Canada; 2000: http://www.phac-aspc.gc.ca/hp-ps/dca-dea/publications/pdf/03-bestpractices_e.pdf.

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Outcome 1bAlcohol Use During Pregnancy is eliminated.

Evaluation Question 1b:Is there evidence that alcohol use during pregnancy has been reduced or eliminated among at risk women and overall among women in Alberta?

Prepared by:William Pelech, PhD, RSWJacqueline Pei, PhD, RPsychCheryl Poth, PhD

ACCERT Evaluation Team Members with core contribution:Erin Atkinson, Jenelle Job, Kendra McCallum, and Katherine Wyper

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Acknowledgements

This 2012 Evaluation of the Parent-Child Assistance Program (PCAP) reflects the efforts of four agencies including McMan Family Services (Calgary), Catholic Social Services (CSS) (Edmonton), Bissell Centre (Edmonton) and Lakeland Centre (Cold Lake) who provide services to at-risk women. The funding for this research project was provided by the Alberta Centre for Child, Family & Community Research (The Centre). A small team of researchers carried out this research with collaborative support from program directors and staff from each participating agency.

The support of The Centre is deeply appreciated. This project was a collaborative effort between the Universities of Calgary and Alberta, and the PCAP Council of Alberta. A collaborative partnership made this work possible with all involved having a common interest in the well-being of vulnerable women and children in Alberta. Dr. Jacqueline Pei, Dr. William Pelech, and Dr. Cheryl Poth (Co-Principal Investigators) would like to thank in particular the following individuals for their assistance: Teresa O’Riordan, Chair, PCAP Council, Tara Hansen, Director of Knowledge and Partnership Development, The Centre, Therese Grant, Fetal Alcohol and Drug Unit Director, Washington State Parent-Child Assistance Program, Tammi Crowley, Program Supervisor, CSS First Steps Program, Pam van Vugt, Program Supervisor, McMan Family Services, Paul Pringle, Program Supervisor, Bissell Centre, Audrey MacFarlane, Executive Director, Lakeland Centre for FASD, Shelley Birchard, Denise Milne, Hazel Mitchell, Janice Penner, and Tara Hanson.

The research team is deeply appreciative of the work of staff at each participating agency for their support and efforts in data collection. Other contributors include research assistants: Susan Dolcecore, Susan Shores, Jared French, Joaquin Gaete Silva, Ines Sametband, and the University of Alberta ACCERT evaluation team (graduate students Erin Atkinson, Jenelle Job, Kendra McCallum, Katherine Wyper David St. Arnault, Laura Gould, Wence Leung, Ellis Chan, Karon Dragon, Virginia Tze, Sukhpreet Tamana, and Stephanie Hayes).

Dedication

This report is dedicated to the vulnerable women and their dedicated mentors of the Parent-Child Assistance Program of Alberta. It is our hope that this research will contribute to improving their well-being.

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Executive Summary

This document summarizes the FASD Year Five Evaluation project and the activities undertaken related specifically to:

Outcome 1b Is there evidence that alcohol use during pregnancy has been reduced or eliminated among at-risk women and overall among women in Alberta?

Data Collection:

Data was collected in five ways:

1) Focus groups - Focus groups were chosen as a method of data collection as they allowed for the largest amount of data to be collected in the shortest amount of time in a cost-effective.

2) Quilting exercise - In addition to the focus groups, PCAP members were asked to participate in a quilting exercise. Quilting was chosen as a method of data collection because the results of such methods have been demonstrated to improve the researcher’s understanding of participant experiences and relationships.

3) Document reviews - The document review involved accessing the KPMG report, which was reviewed to collect any additional information that might help triangulate the focus group findings.

4) Electronic survey - Staff at each agency were electronically surveyed and asked to complete an online version of the PCAP Fidelity Assessment. All administrative and program staff were asked to complete this survey.

5) Program questionnaires - Addiction Severity Index (ASI) Intake/Exit Interview Questionnaires, as well as the Biannual Documentation of Client Progress Interview Questionnaire were gathered from client files spanning the years 2004 to 2011 inclusive.

Findings:

PCAP Mentors are:oEffective at developing trusting relationships with their clients, as evidenced by program attendance

and client reports of satisfaction.1

oDemonstrating fidelity to the original PCAP Model in the importance that they place on relationship-building, trust, and client advocacy.

oIn need of more resources allocated to support the provision of PCAP services.oPassionate and committed to their work with the population that they serve.

PCAP program deliveryoDespite challenges in funding, program providers have been able to expand service delivery over

the past five years.oPCAP sites have been successful at coordinating and collaborating with other service providers

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PCAP program participants have reported:oA significant decrease in welfare as a source of income and an corresponding increase in client

employment.oA significant increase in the average number of months of abstinence from alcohol, drugs and both

alcohol and drug use.oAn increase in the use of birth control methods from intake that appeared to remain stable over

time.oExperiencing an abusive relationship, to a greater extent over time in the program.oA dramatic decrease in the use alcohol and reported pregnancies from the 12-month Biannual

Interview and later.oA reduction in unmet needs for services over time.oA positive experience and satisfaction with the services they have received through PCAP.

Recommendations:

Staff support: oDedicated efforts should be made towards maintaining the health and well-being of PCAP staff. This

could include dedicated (and funded) time for additional training, and opportunities for conversations between mentors across the province to share experiences and support one another.

oExpanding the role of the PCAP Council to support training of the administration of both the Intake/Exit ASI, and the Biannual Interview.

Funding: oConsider revising the current funding model with an emphasis on making sustainable funding

available for PCAP and similar long-term programs. This will allow PCAP programs to make long-term plans and decisions, and will give PCAP staff piece-of-mind in knowing that their commitment to helping their clients over the course of three years will not be jeopardized by short-term funding decisions.

Community Education: oContinue increasing community awareness about the needs of individuals with FASD and the

struggles faced by at-risk mothers. This includes building capacity and understanding within individuals working for various government agencies and related programs (e.g., housing, unemployment).

oIncreasing awareness and educating staff could involve in-service courses for government employees on what to expect and how best to work with this client population.

oA shared understanding of how to best support PCAP clients would increase the effectiveness of service delivery across multiple areas

Service Delivery:oRecognize that PCAP programs in different geographical areas (e.g., rural versus urban) will

experience differing challenges and situations. Be prepared to support necessary changes to and specialization of PCAP programs based on their location and the needs of the communities they serve. This will ensure that they are most effectively serving their specific client populations.

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oContinue using a relationship-based model of service delivery, as this aspect is considered to be the core element of PCAP’s success. Furthermore, explore ways to support and encourage relationship-building and client advocacy within PCAP.

oExamine where gaps in coordinated service delivery remain. This should include looking for ways to streamline applications for services between agencies and should further explore coordinating services to support clients upon their planned exit from PCAP.

oIt is recommended that targeted prevention programs such as PCAP be expanded, especially in rural areas, in order to increase access to services and to further prevent or reduce alcohol consumption during pregnancy and the incidence of FASD throughout Alberta.

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Table of Contents

Outcome 1b:...................................................................................................................................................................................... 35Evaluation Question 1b................................................................................................................................................................ 35

Stakeholders..................................................................................................................................................................................... 35Research Purpose and Objectives........................................................................................................................................... 35Research Design.............................................................................................................................................................................. 37

Qualitative Methods....................................................................................................................................................................... 37A. Data Collection............................................................................................................................................................................ 38B. Data Analysis............................................................................................................................................................................... 40Quantitative Methods.................................................................................................................................................................... 41

Research Findings.......................................................................................................................................................................... 42Part I: Qualitative Findings........................................................................................................................................................ 42Part II: Fidelity Assessment......................................................................................................................................................... 49Part III: Behavioural Outcomes................................................................................................................................................ 67

Main findings.................................................................................................................................................................................... 86Recommendations..........................................................................................................................................................................86Considerations for Year 7 Evaluation....................................................................................................................................87References.......................................................................................................................................................................................... 89

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Alcohol use during pregnancy is eliminated.

Research Report: Outcome 1b

Outcome 1b:

Evaluation Question

1b: Is there evidence that alcohol use during pregnancy has been reduced or eliminated among at risk women and overall among women in Alberta?

Stakeholders

Primary Stakeholders:Government of AlbertaAlberta Health ServicesFASD-Cross Ministry CommitteeFASD Service NetworksFASD Parent-Child Assistance Program Alberta Child and Youth ServicesAlberta Centre for Child, Family & Community ResearchUniversity of Alberta ACCERT evaluation teamUniversity of Calgary – Dr. William Pelech

Secondary Stakeholders:Teresa O’Riordan Shelley BirchardDenise MilneTara HansonPCAP staff including case managers, mentors/advocates, supervisors and managersChildren and families who are affected by FASD

Research Purpose and ObjectivesThe Parent-Child Assistance Program (PCAP), originally developed in Seattle, Washington, is a home visitation intervention program for women who have a history of alcohol and drug abuse and are at risk of giving birth to a child with FASD.2 The program follows a mentorship model, in which clients receive services over a three-year period. PCAP Mentors work with clients to access needed services, to complete substance abuse treatment, and to choose effective family planning strategies, all with the goal of preventing future alcohol-affected births. The PCAP program is currently being implemented across Alberta.Thus, the overarching purpose of this project was to determine both how we are meeting the needs of Albertans affected by FASD through the Parent-Child Assistance Program, as well as what evidence there is to support that these efforts are successful. The current report is a collaboration between the University of Alberta and University of Calgary, who worked together to collect both qualitative and quantitative data to answer following questions:

35

(1) How do participating agency staff experience the implementation of their PCAP program and how do they determine whether the program has achieved its goals?; and (2) What behavioural changes occur for women who receive mentoring services provided by PCAP participating agencies?

The objectives of this evaluation include:

1. To explore staff experiences of implementing the PCAP Model including their experiences with clients, challenges in implementing the PCAP Model, the impacts of PCAP services for clients, as well as the benefits and limitations of these services. Related research questions include:

a. Tell us about the services you offer women served by your program?b. What were some of the challenges encountered in implementing the PCAP Model?c. How have mentoring services affected the quality of life of women in your PCAP program?d. Which aspects of the PCAP Model have you found particularly beneficial for your clients and

why?e. Which aspects of the PCAP Model were not helpful for your clients and why?f. What additional services, outside of the PCAP Model, have you provided to women in your

PCAP program?g. What additional services outside of the PCAP Model are needed by the women served by

your PCAP program?

2. To examine the extent to which participating PCAP services reflect ideala program replication. Related research questions include:

a. What are the characteristics of PCAP clients?

b. To what extent do PCAP client enrolment and relapse reflect ideal program replication?

c. To what extent do staff backgrounds, qualifications, and training meet ideal program replication?

d. To what extent do staff services meet ideal program replication?

3. To determine if PCAP service fidelity is predictive of client outcomes. Related research questions include:

a. In what way are staff backgrounds, qualifications, and training related to program outcomes?

b. In what way are staff activities related to program or client outcomes?

4. To examine what changes occur for clients during the PCAP in terms of:a. Employment Support;b. Substance Use;c. Housing Stability;d. Family Planning;e. Domestic Violence;f. Use and Quality of Connections to Support Services;

a Ideal replication as defined under the PCAP Fidelity Assessment. Further elaboration on this and other descriptors will be presented in the Fidelity Assessment instrument.

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g. Subsequent Alcohol-exposed Births.5. To examine how PCAP clients access substance abuse treatment and education programs.6. To examine the characteristics of target children of PCAP clients. Related research questions include:

a. What are the legal statuses and living situations of target children born to PCAP clients?b. How many target children are diagnosed or suspected of having FASD? c. What therapeutic services are received by target children of PCAP clients?

Research Design

This project involves mixed methods; to examine the implementation of PCAP services we used qualitative methods (e.g., focus groups) and quantitative methods (e.g., file reviews). To examine the outcomes of the implementation of the PCAP Model we utilized a quasi-experimental, repeated measures design. In this design, behavioural outcomes (e.g., alcohol/drug treatment, alcohol/drug use, housing stability, birth control/family planning, exposed births, source of income, education, child legal status, child placement, child diagnosis, services received by child, domestic violence, domestic violence service, connections with other support services) were tracked. In this design, the implementation of the PCAP mentoring services was conceptualized as an intervention or independent variable and the behavioural outcomes are the dependent variables (see Figure 1).

Figure 1: PCAP Evaluation Research Design

Fidelity Assessment

Sampling (N=200)

Service Impacts

Sampling (N=20)

Quantitative & Qualitative Analysis

Final Staff Focus Group (N=3)

Staff Focus Groups (1 & 2) (N=3)

Preliminary Report

Modified Fidelity

Assessment

File Reviews Biannual Interviews (6 to 36 mos.) Bissell Ctr. (N=70) CSS First Steps (N=64)

Final Report

PCAP Council & Conference Presentations

Journal Publications

File Reviews ASI Intake/Exit McMan Calgary (N=66)

Qualitative MethodsA. Data Collection: Data was collected from three sources throughout the evaluation process: 1)

focus groups, 2) a quilting exercise, and 3) document reviews.

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B. Data Analysis: Data collected from these three sources were analyzed using an inductive qualitative process (i.e. open coding).

C. Dissemination: The dissemination plan was developed and implemented to communicate findings to practitioners and academic communities in an attempt to increase dialogue between these communities. See Appendix A for Dissemination Methods.

A. Data Collection

In order to capture multiple perspectives and experiences, various sources were utilized for data collection. These methods included focus groups, document reviews, and a quilting exercise (each will be described in detail below). Our specific data source was PCAP personnel.

1) Focus groups

PurposeFocus groups were chosen as a method of data collection as they allowed for the largest amount of data to be collected in the shortest amount of time in a cost-effective manner.3 Focus groups also allowed the participants to share their in-depth experiences, viewpoints, and perspectives with the facilitator and each other.

ProceduresAll focus groups followed similar procedures including: recruitment via email, protocol development, and facilitation by two researchers (facilitator and recorder). Each focus group was audio-taped and later transcribed verbatim. In total, 47 members from PCAP participated in seven focus groups held on March 16th, 2012 in Edmonton. All participants were together for their Annual General Meeting (AGM), and then were asked to voluntarily participate in focus groups. Follow-up focus groups were also held on April 19 th and April 20th in Vancouver at the International FASD conference. The criteria for selection included: individuals currently employed within agencies and involved in the delivery of PCAP services. All agencies attending the AGM were invited to participate.

ProductsData gathered through focus groups were used to learn about PCAP programs and mentors, in addition to addressing Outcome 1B. See headings “Key Findings” for a synthesized description of focus group findings.

2) Quilting exercise

Purpose

In addition to the focus groups, PCAP members were asked to participate in a quilting exercise. Quilting was chosen as a method of data collection because the results of such methods have been demonstrated to improve the researcher’s understanding of participant experiences and relationships. The quilting exercise is an innovative technique that allowed the researchers to integrate participant’s stories into a meaningful collective experience.6 Using the metaphor of a quilt to shape this project underscores the multilayered and shared aspects of research, and reinforces how a variety of methods serve to capture different elements of the participants’ experiences.

Procedures

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PCAP members were divided into two groups for the quilting exercise, with one group completing focus groups before quilting and the other group quilting before their focus group. To create their pieces, participants were provided with fabric patches, markers, glitter, glue, pastels, and pencil crayons. An example of a complete patch was also available for reference. Participants were given minimal directions; they were simply asked to share their experiences of working in PCAP through illustrations and/or words. On the back of the patches, participants included their name, role, and a title for their piece. Photographs were taken as participants worked on their patches as a means of documenting the exercise, and comments made by participants throughout the process were noted. Finally, photographs were taken of the construction of the quilt by our master quilter as she synthesized the patches and recorded her thoughts and reactions throughout the creative process.

Products

A master quilt was made using the quilting squares created by the members. A photograph of the finished quilt will be shared with all PCAP members who participated in the quilting exercise. As well, photographs taken throughout the exercise were used to create a video capturing the quilting process and the themes that emerged.

3) Document review

Purpose

Document review was chosen as a method of data collection as it allowed for a thorough examination of documents to further synthesize and triangulate data collected from the focus groups.

Procedures

The document review involved accessing the KPMG report, which was reviewed to collect any additional information that might help triangulate the focus group findings.

Products

The information collected from the document review was synthesized with data from the focus groups, and used to address Outcome 1B. Only part of the KPMG document was reviewed for the sole purpose of addressing Outcome 1B, thus document reviews will not be included in the “Data Analysis” section. See heading “Key Findings” for results of the document reviews as they relate to Outcome 1B.

Limitations

Sampling Bias – The data collected for this project were limited by time pressures as well as participant availability and willingness to be involved. The Service Networks were allowed to self-select members of the leadership team who participated in the focus groups. Self-selection has the potential to introduce bias into focus group responses, as individuals with differing viewpoints might not be selected to participate. The FASD-CMC, the FASD Service Networks, and the PCAP members’ participation in the focus groups were completely voluntary. Efforts to mitigate concerns surrounding bias included embedding data collection into pre-existing meetings when possible in order to reach a wider range of potential participants.

Self-reporting – All data collected from focus groups were limited to what participants shared with the facilitators and how they perceived their own situations and experiences. In an effort to mitigate concerns

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surrounding self-reporting, additional data sources (e.g., document reviews, research data, and meeting notes) were used to triangulate data that were reported from focus groups.

Non-Identifiable Presentation of Data – Participants were ensured that all identifying information would be kept confidential, thus the data collected from focus groups were dependent on particular Service Network and PCAP circumstances. For example, it is beyond the scope of this report to indicate whether Service Networks with particular geographic characteristics differ in their ability to provide effective service delivery, since identifying specific geographical locations would compromise participant anonymity. Efforts to mitigate this limitation include stating explicitly whether a comment was representative of all focus group discussions or specific to a minority of discussions.

B. Data Analysis

Data was analyzed from three different sources including focus groups, document review, and the quilting exercise.

Focus Groups Analysis

Purpose

The purpose of the focus group analysis was to find common themes that emerged from the data, using inductive methods of analysis.

Procedures

The first phase was to conduct a within focus group data source analysis, in which a transcript of each focus group was allocated to a team member to read through the text, make notes, and engage in an inductive process known as open coding. Open coding can be defined as “coding the data for its major categories of information,”3(p.64) and is inductive because the researcher analyzes the raw text in the transcript to generate common categories that emerge from the data, without utilizing the research questions to influence the analysis. The researcher coded each transcript using Atlas-ti qualitative research software. The initial code list was created, and the researcher wrote a description for each code. Once all preliminary codes were created, the researcher moved on to the second level of analysis.

In the second phase, the same inductive process that was used for generating codes for the individual focus group analysis was used across focus group transcripts. First, two researchers read over the transcripts and coded independently using the initial code list created from the individual focus group analysis. Second, similarities and differences between code lists for each transcript were compared, and the researchers reviewed the codes and integrated (added, subtracted, merged) their code lists. Third, a master code list was created and used to identify common themes across focus group and interview transcripts. The two researchers then discussed the codes, subthemes, and themes they generated from their analysis until a consensus was reached. Lastly, the researchers created a chart that included the sub-codes (original codes), codes, subthemes, and themes (see Appendix B for an example).

Products

The individual focus group analysis produced findings that were unique to each individual focus group. Completing the individual data source analysis first prepared the data to be used at a more advanced stage, the across-focus groups analysis. For the across-focus groups analysis, a summary was produced and

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disseminated to the PCAP mentors. An example of the PCAP focus group summary can be found in Appendix C.

Quilting Analysis

Purpose

The purpose of the quilting analysis was to use the across-participant group findings to identify common themes that emerged in the PCAP quilting experience.

Procedures

The analysis for quilting pieces and photographs taken during the exercise was undertaken by the master quilter and a research assistant to ensure accuracy and consistency in interpretation. As the quilter assembled the quilt, common words, images, and colors were identified and organized into themes. Focus group audio-recordings were played, providing the quilter with a context for the quilting pieces and enabling her to better understand the experiences participants wanted to convey. Following the themes discussed with the quilter, the research assistant created a video slideshow of photographs set to music. Photographs demonstrating different stages of the quilting process were included to show how participants planned and created their pieces. Songs were selected according to their relevance to each theme, keeping in mind PCAP and the specialized nature of its work. Placement of the quilting pieces and photographs within the various themes was completed independently with the master quilter and research assistant discussing each other’s interpretation until consensus was reached.

Products

From the quilting exercise, a master quilt and video with pictures, music, and themes was produced and disseminated to PCAP members.

Quantitative MethodsQuantitative methods were utilized to examine several critical project components:

1. Fidelity Assessment – before examining the outcomes of the PCAP program, it was important to examine the extent to which the ideal PCAP Model was implemented by participating agencies. Staff at each agency were electronically surveyed and asked to complete an online version of the PCAP Fidelity Assessment. All administrative and program staff were asked to complete this survey.

2. Behavioural Outcomes – Addiction Severity Index (ASI) Intake/Exit Interview Questionnaires, as well as the Biannual Documentation of Client Progress Interview Questionnaire (administered at six month intervals over the three year service period) were gathered from client files by program staff spanning the years 2004 to 2011 inclusive. Data from these documents were integrated to examine behavioural changes including changes occurring for clients relating to employment support, substance use, housing stability, family planning, domestic violence, use and quality of connections to support services, and subsequent alcohol-exposed births. Data from the ASI Intake/Exits and Biannual Interviews was gathered to determine the extent to which clients accessed substance abuse treatment during their participation in PCAP. Finally, data from the ASI Intake/Exits and Biannual Interviews was gathered to examine the characteristics of target children born to PCAP clients during their participation in PCAP including their legal statuses and living situations, their diagnostic statuses, and the nature of the therapeutic services they received.

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Research Findings

This section of the report contains three parts. First we include findings from the qualitative data collection, which speaks to how (and whether) FASD prevention is occurring in Alberta through the work of PCAP. Then, before examining behavioural outcomes for PCAP clients, an examination of the extent to which the ideal PCAP Model was actually implemented by participating agencies will be presented.

Part I: Qualitative Findings describes results from focus groups/interviews, the PCAP quilting exercise, and document review.

Part II: Implementation of the PCAP Model examines the extent to which the ideal PCAP Model was implemented by participating agencies.

Part III: Behavioural Outcomes, we examine differences that emerged in outcome measures over a two year period from the entry of clients into PCAP through to their exit or completion of a minimum of 24 months of service.

Part I: Qualitative Findings

Focus

a) Alcohol use during pregnancy is eliminated.b) Decrease incidence of FASD by providing an environment of healthy pregnancy.c) Increase targeted prevention through mentorship and outreach to families most at risk of having

children affected by FASD (e.g., PCAP).

Question

Is there evidence that alcohol use during pregnancy has been reduced or eliminated among at-risk women and overall among women in Alberta?

Data sourcesMajor source(s): Focus groups with PCAP personnel and the KPMG Alberta FASD Service Networks: Provincial Evaluation Report.Complementary source(s): Literature review (see Reference section below).

Summary of Key FindingsThe Parent-Child Assistance Program, originally developed in Seattle, Washington, is a home visitation intervention program for women who have a history of alcohol and drug abuse and are at risk of giving birth to a child with FASD.2 The program follows a mentorship model, in which clients receive services over a three-year period. PCAP Mentors work with clients to access needed service, complete substance abuse treatment, and to choose effective family planning strategies, all with the goal of preventing future alcohol-affected births. The PCAP program is currently being implemented across Alberta. Focus group discussions with PCAP members concentrated on frontline workers’ experiences working with at-risk women as PCAP mentors. Findings are summarized as follows:

PCAP is perceived as an effective prevention program. Core to this success are two aspects of the program:

oBuilding strong and trusting relationship with clientsoAdvocating on behalf of clients

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o Feasibility of service delivery was identified as a key concern. In particular the following funding issues

were identified: certainty of funding, length of funding provided, and sufficient funding.

Coordination of services beyond the PCAP program was identified as important to optimal service delivery. PCAP clients often require access to a number of different services to ensure their continued success. However, a number of client characteristics and a lack of coordinated service delivery between providers create barriers to successful attainment of these important services.

Key findings

A total of 47 PCAP workers participated in seven focus groups. Their roles included: Service Network coordinators, program managers, administrative personnel, front line supervisors, mentors/advocates, and leadership team members. Although each focus group reported unique experiences and perceptions, there were common themes across all groups that indicate similar experiences and shared understandings. The following is an overview of themes and subthemes as they emerged from the focus group discussions, supplemented with supporting data from the KPMG evaluation where appropriate:

Theme:

Strengths of the PCAP Model

A major theme that emerged from focus group discussions was the acknowledgement of the strengths that exist in the PCAP Model. These strengths can be conceptualized as aspects of PCAP that are perceived to be fundamental to the success of the program and the women served. Included among these strengths is PCAP’s relationship-based model of service delivery, and the importance that client advocacy plays in working with the population that PCAP serves.

Relationship-Based Approach

The PCAP Model emphasizes the importance of a relationship-based process that values trust and unconditional support of the client.2 One participant discussed the power of building strong relationships by illustrating that healing from traumas experienced and related progress towards healthy living come not solely from program strategies, but also from the relationship between the client and her PCAP mentor:

“I think the greatest thing about the program is the relationship piece—how even if they screw up, it’s not like I’m going to sit there and give them a lecture. I’m like, “okay, now what? Where do we go from here? How do we dust off, pick up, and go from here?”… Sometimes, it’s taken me a year and a half of on and off meeting with them when they’re in crisis to actually build that relationship… Yeah I can do some advocating and problem solving… but my best work starts once I actually have that trust and rapport.”

This account suggests that a client’s success is related to her ability to develop a trusting relationship with her PCAP mentor in a supportive and non-judgmental environment. This relationship built between PCAP client and mentor appears to be analogous to the “working alliance” in psychotherapeutic contexts, the quality of which has been shown to relate to client progress and therapeutic outcomes.7 In a similar manner, PCAP mentors report that developing a close and trusting relationship with their clients is one of the most important steps in working toward success, above and beyond the formal PCAP strategies and services.

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The development of trusting relationships allows PCAP mentors to guide and educate their clients on the risks of alcohol consumption during pregnancy, and to work with them to affect future decision-making around substance use. This is evidenced by data collected for a recent Service Network evaluation which reported that of the women who were pregnant when they entered PCAP, 49% completed treatment for substance abuse. Additionally, of all women enrolled in the program, 64% reported reduced alcohol use, 45% of clients reported abstaining from alcohol for periods of up to 12 months, and 11% reported periods of abstinence of longer than one year.1 The development of trust was consistently mentioned as a necessary pre-requisite for being able to work effectively with a client toward these positive outcomes. As one participant noted:

“[Our clients] never had anyone to trust until they came to the program and … it takes a while for them to build that trust but once you [have it] … you can help them make huge changes in their lives.”

PCAP mentors reported that they know they have developed trust when a client continues coming back for services, and when she is able to open up to them about things that she previously refused to talk about. For example, one mentor explained how she recognizes trust in the relationship; “I was doing ASI with somebody and… initially she was trying to hide some stuff but… [then] she said ‘can we go back?’ and she told me everything… That’s trust and I appreciate things like that.” The level of trust developed between PCAP mentor and their clients is further evidenced by client satisfaction in the services they received through PCAP. In a recent survey of the 254 women that have been served by PCAP programming, 99% reported that they would return to PCAP if they needed similar help in the future and that they would also recommend PCAP to a friend.1 The trusting and supportive environment described by PCAP mentors speaks to Alberta PCAP programs’ fidelity to the original PCAP Model, in which trusting and supportive relationships are a key feature.2

Client Advocacy

In addition to building strong relationships with clients, the PCAP Model emphasizes advocating for clients by representing them and educating others about their needs. The ability to advocate is seen as a positive characteristic of the program in that it allows PCAP mentors to highlight their clients’ needs as well as express their passion for the work they do. One participant suggested that when PCAP mentors see positive outcomes (e.g., obtaining housing for a client, getting a client into a program) as a result of their advocacy efforts, it makes their work even more fulfilling:

“…when [our clients] come to us, they’ve lost something and we are the ones that are supposed to go find it with them… So you go and advocate for this client or educate whoever the client is fighting with and then things start working. It is amazing how they just look at you… as somebody who is on their side. That kind of relationship is really what makes it worth it.”

One of the main areas in which PCAP mentors reported advocating for their clients was in working with other agencies and service providers. Participants reported that external agencies are often under-educated and unaware of the needs of individuals with FASD and the at-risk women that PCAP serves. This lack of understanding can affect service delivery and clients’ ability to sustain gains made in the program.2 One participant explained the need for increased capacity of service providers working with this population of at-risk women: “…people outside our service… they need to know what we know; otherwise, they will not be able to work successfully with [at-risk or affected individuals].” Although PCAP is demonstrating significant success in their prevention efforts, as evidenced above, they are ultimately limited by the capacity of

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agencies and service providers with whom they collaborate. Thus, it is valuable to foster awareness and understanding among allied professionals, other service providers, and community agencies in order to strengthen service delivery across programs.Emerging Understandings:

A relationship-based approach is key to making progress toward positive outcomes with this population.

Evidence Toward Outcomes: PCAP mentors are effective at developing trusting relationships with their clients, as evidenced by

program attendance and client reports of satisfaction.1

PCAP mentor accounts and client reports suggest that Alberta PCAP sites are demonstrating fidelity to the original PCAP Model in the importance that they place on relationship-building, trust, and client advocacy.

Pressing Issues: PCAP mentors are devoted to developing relationships with their clients, and are the key to PCAP’s

success. It is therefore crucial to maintain the health and well-being of PCAP staff. There remains a lack of awareness and understanding about the needs of the population served by

PCAP among other agencies and service providers, which ultimately limits PCAP’s ability to effectively deliver services to their clients.

Theme:

Program Feasibility

The second theme to emerge from focus group sessions was the feasibility of PCAP service delivery. Participants discussed several challenges to effective client support and provision of services, particularly in relation to the availability and sustainability of funding and resources allocated to their program.

Availability of Resources

Central to the feasibility of programming is the presence of dedicated funding and resources over time. As a result, PCAP service delivery is affected when resources are limited. As one participant reported, “the resources and support that we get as workers will be a reflection of the resources and support we will be able to give our clients.” Many participants expressed the need for additional resources to support their service delivery, such as bus tickets for clients, more adequate reimbursement for mileage, and funds for conference and meeting attendance.

PCAP participants also expressed frustration with the current funding model, in which there are significant barriers to attaining funding required for successful program delivery. One challenge of note was the complexity of the funding model and the “running around” between different isolated funders that takes place when requesting funding. As one participant expressed, “… for most of us in Network or coordinator positions, we’re having to chase funding … [in] …, siloed streams.”

Sustainability of Resources

The issue of sustainable service delivery was raised in five of the seven focus groups, as concerns were expressed around the provision of long-term support for at-risk mothers and their children. Since the PCAP

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Model emphasizes a three-year model of service delivery, participants reported concern about their ability to see women through the entire program, as funding decisions are made on a more short-term basis. Decisions such as hiring staff are complicated by the uncertainty of the availability of sustained funding. As one participant explained:

“Especially when you’re doing mentoring programs that exist for three years (chuckles), to not know that you’re going to have funding the next year when you’re building [a] relationship… The general contracts that they [are] having them renew annually is really problematic for programs that are trying to operate in a different way.”

In addition to the uncertainty of sustained funding from year-to-year, there is also the concern of funding for PCAP beyond Year Ten of the 10 Year Strategic Plan. As one participant expressed:

“There’s lots of fears around what happens in the year eleven… we’re not doing a lot of talking about what’s happening after year eleven and there’s a whole big system that’s all been set up based on CMC funding, and it would be nice to know that we had sustainable funding beyond another five years.”

Participants reported that this uncertainty around the provision of long-term funding to support the continued development of PCAP client services is a source of frustration and stress. These PCAP members are very dedicated to their work and the women that they serve, and the insecurity of their clients’ futures in the program is taxing.

Emerging Understandings: FASD is a lifelong disability, the prevention of which requires ongoing resources and funding.

Similarly, the population of women served by PCAP requires long-term sustainable support.

Evidence Toward Outcomes:1. Despite challenges in funding, program providers have been able to expand service delivery over the

past five years.

Pressing Issues: The long-term needs of the PCAP program, and the clients they serve, are not being met by the

current funding model. PCAP members expressed the need for more resources allocated to support the provision of PCAP

services.

Client Access to Services

This final theme was conceptualized as encompassing factors that affect PCAP clients’ ability to gain access to a variety of required services, and includes barriers to services, such as the amount of coordination between agencies.

Barriers to Services

Focus group discussions centered on both population characteristics (e.g., marginalization of FASD-affected individuals, stigma associated with diagnosis, discrimination, and the need for addictions treatment) and systemic characteristics (e.g., waitlists, lack of affordable housing, housing policies, assessment and

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diagnosis procedures, and limited care outside of PCAP) that interfere with a client’s success in accessing needed services. There was an understanding that PCAP clients often face a combination of factors that impede their ability to access services. For example, a young woman with an addiction (a population characteristic) may be stigmatized and may therefore not be seen as a desirable tenant when there is limited housing available (a systemic characteristic). Participants voiced frustrations about the stigma associated with FASD and its effect on access to and receipt of healthcare and housing services. As one participant relayed:

“…a lot of our women don’t look that presentable because [they] work the streets. They’re enrolled in prostitution so they’ve had hard lives. Somebody that’s 20 may look like they’re 40… Unfortunately, people everywhere judge [others] by their looks first and then everything else…. It’s just a fact of life.”

Geographical considerations were also discussed as limiting client access to services. Limited availability of services in rural areas is having an impact on PCAP’s ability to deliver effective services and reduce alcohol use among at-risk women in more remote areas of the province. One participant expressed concern about how isolating it can be working in a rural setting:

“Being from a rural community, isolation is a big issue… medical or counselling [services] are really hard to get... [Affected individuals] don’t have access to a vehicle or somebody to take them [to programs]… where does the funding come from to get them [help] and who takes them?”

As evidenced by this quotation, funding and resources appear to be tied to the geographical barriers to service delivery. With the limited services available in remote areas clients need to be transported into larger urban centers which requires an investment of time, transportation methods, and resources on the part of the PCAP mentor. In addition, PCAP mentors working in rural areas also reported that their clientele are often of different backgrounds than those in urban areas (e.g., some PCAP sites serve Aboriginal reservations), and that the traditional PCAP model may not always be the best fit for delivering the services they require. It is therefore important to consider the differing needs of PCAP sites depending on their locations and the clientele they serve.

Across focus groups, participants reiterated the challenges that population, systemic, and geographical characteristics create for their clients. Indeed, PCAP mentors suggest that it is a never-ending and stressful role to advocate for clients and improve outcomes and quality of life while also struggling to get their clients access to basic services they require.

Coordination Between Systems and Services. Participants also expressed a desire to see agencies and service providers (including PCAP) work together to provide more efficient and coordinated services to clients. This may involve the development of professional networking opportunities and the streamlining of procedures when working with other agencies (e.g., housing). One participant’s account demonstrates the inefficiency that results from a lack of coordinated service delivery:

“In order to get into housing first you have to apply to seven or eight different programs… Think of all the different agencies that offer these little services and you have to kind of phone six or seven agencies and if there was some communication, some coordination of services I think it would make my job easier and I could spend more time doing other things (chuckles) that needed to be done if not on the phone.”

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The above quote emphasizes the importance of developing a more streamlined approach to communication between service providers, and speaks to the amount of time that is currently being wasted; time that could more effectively be spent engaging with clients. In contrast, one participant reported the positive experience of working collaboratively with other service providers and the importance of working together to better coordinate services:

“One thing that helps us a lot especially in my program is that if I have a client who might be… involved in one program or the other… I make sure I call a case conference [with] them to see how we can all come together. So any time I make any request… we are all there to support [the client]. That helps a lot, so [you’re] not going to somebody who doesn’t know about this client. We meet from time to time [and] if there is anything I call them [and tell them] that we meet for this purpose and we all come together [so] we have just one plan of action for a client.”

In addition to improving coordinated service delivery for clients currently receiving PCAP services, participants also noted the importance of working to coordinate continuing services upon a client’s successful exit from PCAP. The difficulties faced by this population of clients are often life-long. Although a three-year program is a good start, many require continued support to maintain program gains.

Emerging Understandings: Clients served by PCAP represent a complex population and experience a number of factors that have

the potential to limit their access to much-needed services. PCAP workers recognize a need for more effective coordination of services and a collaborative

approach both within different branches of PCAP and between PCAP and other agencies and service providers.

Pressing Issues: Population, systemic, and geographical characteristics continue to create barriers to the success

acquisition of services for many PCAP clients. Although PCAP is demonstrating success, gaps in coordinated service delivery still remain. Improving

service delivery coordination would allow PCAP mentors more time to work one-on-one with clients. A planned exit is a key step to program completion. However, focus group participants noted a need

for increased collaboration between service providers during this time, suggesting that as clients leave the program they may struggle to access services that would support their continued success.

Qualitative Summary

Overall, data collected from the focus groups and the results reviewed from the KPMG1 evaluation report suggest that PCAP has a positive impact in reducing alcohol use during pregnancy and therefore decreasing the incidence of FASD by providing a supportive environment for a healthy pregnancy. The qualitative findings outlined above are valuable to the present outcome as they provide important information about aspects of PCAP that are effective in reducing alcohol use among at-risk women, while working toward preventing alcohol-affected births. The sustainability and effectiveness of PCAP and other prevention programs hinge on our understanding of what makes these services successful. The experiences described above provide a context for the accompanying numerical data about reduced rates of maternal alcohol consumption. Additionally, the inclusion of focus groups in the current evaluation helps involved parties respond to a community call stating that PCAP is about more than just numbers—capturing the spirit of PCAP and their goal of not only reducing maternal alcohol consumption and preventing FASD, but also improving the skills and life circumstances of the women served.

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Part II: Fidelity Assessment

Participants in the Fidelity Assessment

To assess the implementation of the PCAP Model in participating agencies, administrative staff (directors, program supervisors) and direct service staff (clinical supervisors, mentors/case managers) were electronically surveyed and asked to complete a 40-item survey that included all items identified in the PCAP Fidelity. Of the 26 staff members listed with each of the participating program sites, 24 (92.3%) participated in this brief survey.

Table 1: Fidelity Assessment Participants By Program Site

Program Site Frequency PercentMcMan Calgary 7 29.2CSS First Steps 6 25.0Bissell Centre 5 20.8Cold Lake 6 25.0Total 24 100.0

As Table 1 indicates, there was an even distribution of participants across participating agencies. Table 2 (below) shows that more than half of the respondents (58%) were case managers, who are directly involved with the delivery of PCAP services. It is noteworthy that a number of staff responded by indicating their service role as “Other.” Of these respondents, there was a program manager, a community worker, an intake worker, a mentor, and a liaison/advocate. Given that the survey was forwarded only to those directly involved with PCAP services, we are uncertain as to why 25% (6) of respondents selected “Other” as their service role. However, part of the reason for respondent selection of the “Other” category may be due to differences in the labeling of direct service roles across programs.

Table 2: Participant PCAP Staff Roles

Role Frequency Percent

Case Manager 14 58.3Clinical Supervisor 3 12.5Agency Director 1 4.2Other 6 25.0Total 24 100.0

Among the 24 respondents there was a range of experience from one to six years. The mean experience of respondents was 2.9 years.

THE PCAP MODEL INDEX

Developed as part of the original PCAP program design, the PCAP Model Index is a quality assurance tool that helps to assess the degree of adherence of the PCAP Model. The tool reviews the core characteristics of the PCAP Model and provides information on how well the local agency is implementing the Model. The

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PCAP Model Index reflects the critical activities for the effective implementation of the PCAP Model. These activities include:

1. Caseloads should be no more than 16 active client families per case manager.2. Case managers maintain frequent contact with client families through home visits; recommended

minimum is two home visits per month.3. Case managers conduct initial needs assessment, help clients identify and prioritize realistic

personal goals, initiate necessary steps to achieve goals, and evaluate and re-establish goals every four months. Case managers coordinate client’s personal goals with program goals.

4. Case managers link clients with substance abuse treatment, provide support for treatment completion and recovery, and help clients develop relapse prevention strategies.

5. Case managers develop and maintain professional relationships with community service providers and help clients utilize appropriate and available services, including, but not limited to, family planning, safe housing, health care, domestic violence services, parenting skills, and mental health services.

6. To facilitate an effective service plan, case managers develop and coordinate a network of contacts with family, friends, and service providers involved in a client’s life.

7. Case managers evaluate client progress according to PCAP protocol.8. Clients are not asked to leave the program because of relapse or setbacks.9. Case managers work with both client and target child regardless of custody issues, and provide

advocacy for other family members as needed.10.A minimum of twice-monthly group staffing sessions are required.11.A minimum of twice-monthly individual supervisor sessions are required.

The Model Index is based on a 5-point scale: “1” indicates that the PCAP site does not meet the core characteristics of the PCAP Model; “2” indicates that there is a small amount of similarity; “3” indicates program activities falling midway between ideal and no fidelity; “4” indicates close similarity to program fidelity; and “5” indicates that a PCAP site fully meets the characteristics of ideal replication.

Client CharacteristicsThis component includes three items, including adherence to program activities relating to client eligibility, client enrollment, and relapse. In terms of following the Model regarding client eligibility:

1. Client Eligibility: 88% of respondents reported that their site either closely or fully met the three requirements of the Model relating to client eligibility.

2. Client Enrollment: 88% of respondents reported that clients sign consent forms to participate in the PCAP. However, one respondent did report that clients did not give signed consent.

3. Client Relapse: 92% of respondents reporting that clients are not asked to leave the program due to relapse or setbacks. One respondent indicated that s/he did not know.

Overall, average fidelity ratings for the client characteristics component was 4.7 on the 5 point scale described above, which approaches ideal replication of the PCAP Model.

Client Intervention Setting

This component focuses on the quality of services offered to clients including: individualized service, program length, frequency of interaction, case manager/client ratios, and accompaniment by case managers to service providers.

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1. Individualized Service: 79% indicated that their program follows ideal replication, and 17% reported close similarity with the PCAP Model.

2. Program Length: In the idealized Model, case managers work with clients for three years. With this activity, it may be more accurate to state that the program intends to work with clients for three years as there are undoubtedly clients who terminate service prematurely. However, similar to Individualized Service, 79% reported that their program serves clients for three years, with an additional 13% who indicated that their program demonstrates close similarity with this standard.

3. Frequency of Interaction: The PCAP Model requires that case managers meet with clients face to face a minimum of twice monthly; 92% reported that they met or achieved close similarity with this standard. Program staff noted that due to the challenges in helping clients to stabilize their lives during the early phases of service delivery, clients sometimes miss appointments.

4. Case Manager-Client Ratio: 79% reported that case managers work with 16 or less clients and 13% reported close similarity with this standard.

5. Case Manager Accompaniment to service provider agencies and case consultations: 100% reported that their program demonstrates either ideal replication or close similarity with the PCAP Model.

Overall, average fidelity rating was 4.7 out of 5 for conducting client interventions, which approaches ideal replication of the PCAP Model.

Characteristics of Staff

This component is comprised of three activities including the professional qualifications of case managers and clinical supervisors as well as the personal background of case managers. It is also important to note that there are some important differences that arise in staff characteristics between the Alberta and Washington contexts. Alberta-based programs operated independently and recruit staff with qualifications and experiences that respond to community expectations and client needs.

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1. Case Manager Professional Qualifications

The PCAP Model requires that case managers hold a minimum of a two year degree/diploma. We note substantial variation in responses, with 67% reporting ideal or close replication and 17% reporting that their program demonstrated small similarity. Three respondents (13%) reported that case manager’s qualifications reflected no similarity or they didn’t know. (Figure 2)

Figure 2: Case Manager Professional Qualifications

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2. Case Manager Personal Background

Another quality sought in case managers is that they share similar backgrounds or life experiences to those of their clients. As Figure 3 indicates, half of the respondents indicated that case managers closely approximated the Model; however, 25% indicated that either case managers did not share similar backgrounds, demonstrated small similarity, or simply did not know.

Figure 3: Case Manager Personal Background

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3. Clinical Supervisor Professional Qualifications

The ideal PCAP Model specifies that clinical supervisors possess a minimum of a BA degree in a mental health or social work field and four years of experience working with high risk populations as well as administrative and supervisory experience. Contextual differences, in terms of differing priorities given to professional qualifications play a role in Figure 4, which illustrates variation in responses; 68% indicated that their programs either achieved or demonstrated close similarity to the Model.

Figure 4: Clinical Supervisor Professional Qualifications

Overall, respondents reported ratings of fidelity for staff qualifications of 3.7 out of 5, which approaches close similarity to ideal replication of the PCAP Model.

Training

The training component of the PCAP Model includes three items: completion of initial PCAP Intervention and Evaluation Training, motivational interviewing, and ongoing training.

1. Initial PCAP Intervention and Evaluation Training

The PCAP Model requires that case managers and supervisors complete PCAP Intervention and Evaluation Training. As noted in Figure 5, 75% of staff reported meeting or achieving close similarity to this standard

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and half reported that their program replicates the ideal Model. Languaging may have also played a role in response variations due to the use of “Evaluation Training” for this item, as staff may not have clearly understood that evaluation training is included in the initial training.

Figure 5: Initial PCAP Intervention and Evaluation Training

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2. Completion of Motivational Interviewing Training

The PCAP Model recommends that all case managers and supervisors complete training on motivational interviewing. As Figure 6 indicates, two thirds (67%) of respondents confirmed that their program case managers and supervisors completed Motivational Interviewing training, with an additional 13% indicating that their program closely approximates this standard.

Figure 6: Completion of Motivational Interviewing Training

3. Ongoing Training

A third training requirement is that case managers and supervisors regularly participate in relevant training to work with high risk populations. Twenty-one (88%) of respondents reported that case managers and supervisors in their programs regularly participate in training.

Overall, average fidelity rating for the staff training component was 4.4 out of 5, which indicates close similarity to ideal replication of the PCAP Model.

Conducting the Intervention

In the PCAP Model, a great deal of attention is given to how interventions are conducted with clients. In this fifth component there are 10 activities that are addressed in the Model Index, including: the application of theoretical practice theory (3 activities), core protocols on boundaries, comprehensive assessments, goal

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development and coordination (2 activities), inclusion of the clients’ social network, development of relationships with service providers and file maintenance standards.

1. Theoretical Practice-Relationship Theory

The PCAP Model requires that case managers and supervisors understand and use the concepts of Relationship Theory. Nearly all respondents reported that their program met (54%) or was closely similar (42%) to the ideal Model.

2. Theoretical Practice-Stages of Change and Motivational Interviewing

The PCAP Model requires that all case managers and supervisors understand and use the concepts of Stages of Change and Motivational Interviewing in their practice. Nearly all respondents reported that their program met (54%) or was closely similar (42%) to the ideal Model.

3. Theoretical Practice-Harm Reduction

The PCAP Model requires that case managers and supervisors understand and use the concepts of Harm Reduction in their daily practice. Nearly all respondents (84%) reported that their program achieved ideal replication, and 16% indicated that their program closely approximates the ideal Model.

4. Understanding and Compliance with PCAP Protocols

The PCAP Index identifies two activities relating to case manager and supervisor understanding and following of identified PCAP protocols on boundaries and standards. Nearly all respondents reported that clinical staff either achieved the ideal Model (71%) or closely approximated the protocols (25%).

5. Continual Assessment

The PCAP Model requires that clinical staff conduct initial and ongoing comprehensive assessments to determine client strengths and problem areas. Nearly all respondents observed that their clinical staff either achieved ideal replication of the Model (46%) or conducted their clinical work in a way that was closely similar (50%) to the Model.

6. Interactive Assessment and Planning

The PCAP Model requires that case managers work continually with clients to identify individual goals and incremental steps required to meet those goals. All respondents reported that case managers in their programs either achieved the ideal Model replication (83%) or closely approximately the Model (17%).

7. Continuity Between Program and Client Goals

The PCAP Model asks case managers to coordinate program goals with client goals to create individualized intervention plans for each client. All respondents reported that case managers in their programs either achieved the ideal Model replication (71%) or closely approximately the Model (29%).

8. Inclusion of Client Social Networks

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The PCAP Model encourages case managers to develop a network of contacts with family and friends involved in a client’s life. Half of the respondents reported that case managers closely approximated the ideal Model and 42% indicated that case managers achieved the ideal Model.

9. Case Manager Operates in a Professional Network

The PCAP Model supports case manager development and maintenance of professional relationships with community service providers and help clients utilize appropriate and available services. Nearly all respondents observed that their clinical staff either achieved ideal replication of the Model (71%) or conducted their clinical work in a way that was closely similar (25%) to the Model.

10. Maintaining the Integrity of Client Files

The PCAP Model requires that case managers maintain client files according to PCAP client file protocols. As Figure 7 illustrates, 88% of the respondents reported that case managers met or achieved close similarity with this standard, with over half of respondents (58%) indicating that programs achieved the ideal Model and 29% reporting that their program achieved close similarity with the Model. Program supervisors indicated that the PCAP Council is developing an Alberta PCAP Manual that will further their aims of increasing the integrity of client files.

Figure 7: Maintaining the Integrity of Client Files

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Overall, average fidelity rating for conducting client interventions was 4.6 out of 5, which approaches ideal replication of the PCAP Model.

Clinical Supervision to Case Managers

The clinical supervision component of the PCAP Model is comprised of seven activities including: supervisor-case manager ratio, quality of supervisory relationships, frequency and content of supervision, accessibility of supervisors, as well as the frequency and content of staff meetings.

1. Supervisor-Case Manager RatioThe PCAP Model requires that supervisors provide supervision to a maximum of nine case managers. Three quarters of respondents reported that their program met the ideal Model of a 1:9 ratio. However, two respondents (8%) reported that their supervisor-case manager ratio was higher than a 1:9 ratio.

2. Quality of Supervisor-Case Manager Relationship

The PCAP Model expects that supervisory relationship permits case managers to share honest observations and personal responses to interactions with clients with their supervisors. Three quarters of respondents reported that supervisory relationships achieved the ideal level of replication.

3. Frequency of Supervision

The PCAP Model requires that clinical supervisors and case managers meet on a bi-weekly basis. Three quarters of respondents reported that supervisory relationships achieved the ideal level of replication, and 17% reported close similarity with this ratio.

4. Content of Supervision

The PCAP Model prescribes the content of supervision meetings, including the monitoring of paperwork, case review, client assessment of progress towards goals, planning, and identification of accomplishments and challenges. As Figure 8 indicates, there is considerable variation reported by respondents. One-third reported that their program had achieved the ideal replication of the Model, 29% reported close similarity to the ideal Model replication, and one quarter reported that replication approximated the midpoint between full and non-replication. Program supervisors offered several explanations for this variation in responses. Among the factors affecting these responses may be recent increased demands upon agency staff, and the challenges of including all elements outlined in this question. File reviews are particularly time consuming and may not always be included in these meetings. However, supervisors also indicated that additional progress is needed in this area.

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Figure 8: Content of Supervision

5. Accessibility of Supervisors

The PCAP Model requires that supervisors are accessible to case managers for consultation and may accompany case managers in the field when needed. Over 60% of respondents reported that their program achieved ideal replication, and another 25% reported that their program attained close similarity with ideal replication.

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6. Frequency of Staff Meetings

The PCAP Model requires that clinical supervisors facilitate weekly staff meetings. However, as Figure 9 indicates, less than half of respondents (46%) reported that their program met this standard and 17% reported that their program achieved close similarity with ideal replication. In addition, 21% reported that their program did not hold staff meeting on a weekly basis or demonstrated small similarity to this standard. Among the factors that may explain the variation in responses here may be differences in agency practices and the languaging of this question. In one agency, all case collaboration groups and administrative meetings were conducted in separate bi-weekly meetings. Thus for that agency, administrative meetings are scheduled twice each month. For another agency both of these activities are included at the weekly staff meeting.

Figure 9: Frequency of Staff Meetings

7. Content of Staff Meetings

The PCAP Model specifies the content of staff meetings including case managers offering peer feedback on selected cases and the invitation of community service providers for discussion of relevant topics. As Figure 10 indicates, more than half of respondents (58%) observed that their program achieved ideal program replication, and an additional 17% rated their program as achieving close similarity with ideal replication.

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Figure 10: Content of Meetings

The average fidelity rating for the clinical supervision was 4.2 out of 5 for the clinical supervision component, which represents close similarity of the PCAP Model.

Clinical Supervision in the Community

This component of the PCAP Model includes definition of the role of the clinical supervisor in the community in terms of the supervisor’s role as intervention gatekeeper and integration in the community.

1. Clinical Supervisor as Intervention Gatekeeper

The PCAP Model defines the role of the clinical supervisor in the community including the supervisor’s responsibility to screen community referrals, determine eligibility and the offering of enrollment to potential clients. As Figure 11 notes, half of respondents observed that their program achieved the ideal replication, with an additional 29% finding that their program demonstrates close similarity with the Model. Program supervisors have noted that Intake processes vary due to geographical location and dual roles of some staff.

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Figure 11: Clinical Supervisor as Intervention Gatekeeper

2. Community Integration of Supervisor

The PCAP Model prescribes the role of the clinical supervisor as being involved in the community in order to identify available services and prevent and address service barriers for clients. However, less than half of respondents (42%) reported that their clinical supervisors achieved this ideal role and 29% reported to have achieved close similarity with this ideal role. These findings appear to be inconsistent with the aforementioned need to raise awareness of client needs with allied agencies. Program managers indicated that they are very engaged with community agencies, but that staff may desire a greater emphasis on advocacy. Supervisors also noted that community integration is also a program responsibility and that case managers are also engaged with community agencies. (Figure 12)

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Figure 12: Community Integration of Supervisor

Overall, respondents reported ratings of fidelity for the clinical supervision role in the community at 4.1 out of 5 for the clinical supervision component, which represents close similarity of the PCAP Model.

Program Evaluation

The PCAP Model outlines three activities related to program evaluation, including data collection and dissemination of data to staff and the community.

1. Data Collection

The PCAP Model requires that staff collect data in accordance with PCAP protocols. Over half (54%) of respondents indicated that their program achieved ideal replication of this activity and another 33% indicated that their program achieved close similarity with this standard.

2. Dissemination of Data to Staff

The PCAP Model directs programs to distribute PCAP data to staff to improve assessment outcomes for clients and improve the quality of intervention practices. However, only one quarter (25%) of respondents report that their program achieved ideal replication of this standard, and 29% indicated that their program achieved close similarity with the Model (Figure 13). Program supervisors noted that this standard has been quite challenging given the heretofore manual data collection and reporting systems. Implementation of

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the proposed Penelope information system will enable programs to provide relevant data to staff on a timely basis.

Figure 13: Dissemination of Evaluation Data to Staff

3. Dissemination of Evaluation Data to the Community

Finally, the PCAP Model supports the dissemination of data generated by PCAP programs to a wider audience on a regular basis. However, as Figure 14 indicates, only 46% of respondents reported that their program achieved the ideal replication (21%) or closely approximated (25%) this standard.

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Figure 14: Dissemination of Evaluation Data to Community

Overall, respondents reported the lowest ratings of fidelity for the program evaluation component at 3.8 out of 5, which approaches close similarity of the ideal PCAP Model.

Overall Program Fidelity

As noted in Table 3, Based upon the ratings of 24 respondents, the average fidelity rating for all PCAP Model Index characteristics was 4.3 out of 5, representing close similarity with ideal replication of the PCAP Model collectively for all four sites. There was limited variation across index ratings with a standard deviation of .43 and a range of mean ratings from 3.19 to 4.97.

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Table 3: Summary of Participant Ratings –Model Index Core Characteristics

Core Characteristic Mean RatingN=24

Relationship to Ideal Model

Client Characteristics 4.7 Approaches Ideal ReplicationClient Interventions 4.7 Approaches Ideal ReplicationStaff Characteristics 3.7 Close SimilarityTraining 4.4 Close SimilarityConducting Interventions 4.6 Approaches Ideal ReplicationClinical Supervision 4.2 Close SimilarityClinical Supervisor in Community 4.1 Close SimilarityProgram Evaluation 3.8 Approaches Close SimilarityOverall Rating of Fidelity 4.3 Close Similarity

Part III: Behavioural Outcomes

The ideal PCAP Model evaluation is based upon a pre-post comparative approach where data relating to client behaviour and life circumstances are compared. Our original proposal was informed by the idealized PCAP Model and the 2011 Final Report and Recommendations for Development of a PCAP Database.

Participants

Table 4 describes the nature of the final sample and available data supporting this part of the evaluation. The actual sample fell far below the originally intended target of 200 cases, which was largely based upon assumptions arising from the 2011 Final Report and Recommendations for Development of a PCAP Database. There are 91 more ASI Intakes than ASI Exit questionnaires, rendering a pre-post comparison utilizing only the ASI as rather impractical. Yet, there are a sizable number of Biannuals that were completed at 6, 12, 24, and 30 months.

Table 4: Participants By Site and Instrumentation

Site N ASI Intake

ASI Exit

Bian. (6 mos.)

Bian.(12 mos.)

Bian.(18 mos.)

Bian.(24 mos.)

Bian.(30 mos.)

Bian.(36 mos.)

McMan 46 45 22 44 41 40 37 29 21CSS First Steps

65 45 3 62 61 49 32 31 10

Bissell Centre

5 5 0 2 0 0 0 0 0

Total 116 95 25 108 102 89 69 60 31

In order to comply with the PCAP model’s prescribed quasi-experimental pre-post design, some data manipulation was necessary. One way to preserve data to was to find a way to combine the ASI data and the Biannual data. Given the larger number of ASI Intakes, our strategy was to include the ASI Intakes as the pre-portion of the pre-post comparison, incorporating the 6 month Biannual where the ASI Intake was missing. A similar regime was utilized for the post-portion of the pre-post comparison, where we utilized the small number of ASI exit questionnaires combining them with the 24 month Biannual. There were two reasons for selecting the 24 month biannual as our post measure. First, given that our case selection criteria

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were expanded to include cases with 24 months of service, it would make sense to use the 24 month measure. Second, as indicated in Table 3, the number of Biannuals available at 36 months was quite small.

After describing the available demographic characteristics of client participants, we will summarize the behavioural outcomes for all available cases including: sources of income, substance use, participation in alcohol and drug treatment, participation in educational programs, housing stability, family planning, domestic violence, use and quality of connections to support services, and the incidence of subsequent alcohol-exposed births. We will include both the pre- and post- results where related pre-post data is available.

Client characteristics

1. Age

As Figure 15 indicates, there is a relatively normal distribution of age across six age groups. Among the 94 clients for whom age was recorded, client ages ranged from 18 to 40 years with a median age of 26 years (and a mean age of 26.6 years).

Figure 15: Client Age Groupings

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2. Ethnicity

Of the 95 clients who responded, indicative of the nature of marginalized populations in Alberta, Table 5 demonstrates that, over half (59%) of the sample includes women of Aboriginal origin.

Table 5: Clients By Ethnicity

Racial Origin Frequency Percentage (%)Aboriginal 56 58.9Caucasian 19 20.0Hispanic 1 1.1Other 19 20.0Total 95 100.0

3. Religion

At Intake, 62% of clients reported a religious affiliation (Table 6).

Table 6: Clients By Religious Affiliation

Religion Frequency Percentage (%)Protestantism 23 26.6

Catholicism 25 24.5

Judaism 1 1.1None 36 38.3Other 9 9.6

Total 94 100

Sources of Income

Table 7 illustrates changes in sources of income for clients documented in the ASI Intake and Exit Questionnaires. Where the ASI Exit is missing, the 24 month Biannual has been substituted. In order to combine ASI and Biannual instruments, some variables that were measured at the interval level (e.g., dollar amount) have been reduced to categorical variables (e.g., presence or absence of income from a particular source). In Table 7, comparing changes in the same clients over time, we noted a significant increase in employment as an income source over time, with the McNemar test for two related categorical variables yielding a p-value of .002. We also note corresponding decreases in welfare, pension, and family/friends as sources, with the decrease in those reporting welfare as source of income reaching significance at p=.039.

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Table 7: Clients Sources of Income at Intake and Exit

Income Source At Intake N=116 (%)

At Exit or 24 Months N=116 (%)

p

Employment 17 (14.7) 32 (27.6) .002*Welfare 89 (76.7) 52 (44.8) .039*Family & Friends 44 (37.9) 38 (32.8) .250Pension 28 (24.1) 24 (20.7) .250Tribal Benefits 3 (2.6) 5 (4.3) .99Note: The N in each column exceeds total number of participants due to reporting of multiple sources of income. *denotes p<.05

The trends reported in Table 7 are generally confirmed in Figures 16 and 17, where, using just the Biannual data for clients for whom we have complete data from 6 to 24 months, we find dramatic increases in employment over time and decreases in reports of welfare as a source of income.

Figure 16: Client Employment Trends (6 to 24 Months) n= 47

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Figure 17: Client Receiving Welfare (Complete Series-6 to 24 Months) n=60

Substance Use

The ASI and Biannuals track use of a wide range of substances including: alcohol, cocaine, heroin, marijuana, methamphetamines, and other drugs. In addition to further details relating to the amount, frequency, and date of last use of various substances, the ASI Intake and Exit questionnaires also capture other forms of use such at binge drinking, inhalants, hallucinogens, sedatives, barbiturates, other opiates, and methadone.

The severity of alcohol use by this vulnerable population dramatically increases the risk of subsequent alcohol or drug exposed births. The limitations of available data are especially pronounced in the analysis of this variable. The ASI Intake and Exit questionnaires offer very precise measurement of the frequency and amount of substance use. Of particular relevance is the measurement of binge drinking frequency. However, the Biannual questionnaires do not offer such precise measurement. The need to combine data from both instruments leaves us with having to reduce the precision of the data used for analysis, moving from interval and ordinal data to simple categorical data. However, while these data problems limit our ability to evaluate change in clients over their tenure in PCAP, it does not prevent it. In this section, we will outline the presence of alcohol use at Intake and compare it with use at 24 months. We will also examine trends in simple use over time.

Below we have displayed the usage of various drugs at Intake from completed ASIs at Intake. There is a tendency for clients to underreport as well as problems with missing data. We have included only those substances where there were more than 10 valid responses.

Figure 18 illustrates the pattern of alcohol use by clients at Intake. Of those reporting, over half reported never using alcohol (56%) and 44% reported using alcohol at least once over the last 30 days.

Figure 18: Alcohol Use at Intake (Last 30 days) (n=43)

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Given the confirmed relationship between binge drinking and higher incidence of FASD, we have also reported patterns of binge use of alcohol by clients. Figure 19 displays a similar pattern of binge drinking among clients with 45% reporting never binge drinking over the last 30 days. However, of greater concern are the 55% who reported that they binge drink at least once per month.

Figure 19: Binge Use of Alcohol at Intake (Last 30 days) (n=31)

Almost two-thirds of respondents (65%) reported never using cocaine over the past 30 days prior to intake (Figure 20).

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Figure 20: Cocaine Use at Intake (Last 30 days) (n=20)

Likewise, approximately two-thirds reported never using marijuana over the past 30 days prior to Intake (Figure 21).

Figure 21: Marijuana Use at Intake (Last 30 days) (n=21)

Next, we move on to examining trends of alcohol and drug use. Using Biannual data (N=46) for those cases with complete data, there is an increase in mean months of sobriety reported by clients in Figure 22. We examined this data using a one-way repeated measures ANOVA and again found a significant increase of months of sobriety over time F (3, 27)=5.70, p=.004.

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Figure 22: Mean Months Sober (at 6, 12 and 24 Months) n=32

A similar trend is also evident in Figure 23 for those reporting the number of months of abstinence from drug use from 6 month biannual to the 24 month biannual. We also examined this data using a one way repeated measures ANOVA and found a significant increase of months of abstinence over time F (3, 29)=11.64, p<.001.

Figure 23: Mean Months Clean from Drugs (6 to 24 Months) n=57

Not unexpectedly, given the above results, trends for overall months of clients remaining clean and sober over 24 months also significantly increased over time F (3, 54)=27.11, p<.001 (Figure 24).

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Figure 24: Consecutive Months Clean and Sober (6 to 24 Months) N=57

Alcohol and Drug Treatment

As no information was gathered at Intake concerning client completion of alcohol and drug treatment, all that we can state here are cases where clients reported attending or completing treatment during their tenure in PCAP. Again, given the limited number of ASI Exit questionnaires completed, we were forced to combine the Exit measures with the Biannuals at 24 months. For the sake of brevity, we report the number and proportion of clients who completed or attended various forms of treatment during the first two years of PCAP.

As indicated in Table 8, of the 70 clients for whom we have data, 62 (89%) completed some form of treatment during their participation in PCAP. The exact nature of this treatment is somewhat uncertain, as 28 (40%)) reported completing “Other” forms of treatment, while 34 (49%) reported completing a specific type of treatment. The reason for the size of the “Other” category is a by-product of reducing the categories in the ASI and Biannual to those categories that are listed in common on both questionnaires. The “Other” category includes a wide range of types of treatment including “transitional housing, treatment in jail, detoxification, and other treatment.” Of course, how one defines completion of counselling and other forms of treatment is unclear from the data.

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Table 8: Client Completion of Alcohol and Drug Treatment By Type (n = 70)

Treatment Frequency Percentage (%)None 8 11.4Inpatient 11 15.7Outpatient 7 10.0Methadone 1 1.4Support Group 4 5.7Counselling 11 15.7Other 28 40.0Total 70 100.0

The instruments also recorded where clients attended but did not complete treatment. The results presented below in Table 9 do not include those who reported completing various forms of treatment. Indeed, it is likely that an individual client may have attended more than one form of treatment. Keeping in mind that 28 files did not record this information, all of the remaining clients for whom we have data reported attending some form of treatment. Perhaps not unexpectedly, 58% of clients attended various forms of counselling, which often accompanies completion of other forms of inpatient/outpatient/institutional treatment.

Table 9: Participation in Treatment By Type (6 to 24 Months) (n=88)

Type Frequency Percentage (%)None 8 9.1Inpatient 1 1.1Outpatient 4 4.5Support Group 6 6.8Counselling 51 58.0Other 18 20.5Total 88 100.0

Participation in Educational Programming

A similar regime, to substance abuse treatment will be presented below relating to participation in educational programming by PCAP clients. As with treatment findings, differences between the ASI and Biannuals resulted in a small number of categories. As Table 10 indicates, of the 19 clients for whom we have data, more clients completed vocational or other training than high school, college or university. However, it is important to note the relatively small number of program completions recorded for clients. Part of the reason for this low number may be due to the shortening of the length of reporting from 36 to 24 months, having a dampening effect on the numbers of clients completing university degrees or college diplomas.

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Table 10: Client Completion of Education Programming By Type (n=19)

Program Frequency Percentage (%)High School/GED 2 10.5Vocational 7 36.8Community College 1 5.3

University Degree 2 10.5Other 7 36.8Total 19 100.0

As noted in Table 11, approximately one-third (35%) of clients reported attending educational programs. This category included both those who dropped out or were currently in progress of completing their program. The above explanation for the dampening of completion rates may be given some credence by the more encouraging numbers of clients who reported that they attended community college and university degree programs.

Table 11: Client Participation in Educational Programs (n=40)

Program Frequency Percentage(%)High School/GED 3 7.5Vocational 6 15.0Community College 10 25.0University Degree 3 7.5Other 18 45.0Total 40 100.0

Housing Stability

One of the goals of PCAP is to enable clients to obtain and maintain stable, permanent housing. Sample attrition was particularly problematic with respect to housing stability. There were very few data points available from the 6 month Biannual Interviews. Consequently, only data at intake and 12 to 24 months was included here. As Table 12 illustrates, 45 out of 86 (52%) of clients reported residing in permanent housing at Intake.

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Table 12: Types of Housing From Intake to 24 Months

Housing Type At IntakeN=86 (%)

12 MonthsN=79 (%)

18 MonthsN=60 (%)

24 MonthsN=57 (%)

Homeless 2 (2.3) 0 (0.0) 2 (2.8) 2 (3.5)

Shelter/Motels 8 (9.3) 4 (5.1) 3 (4.2) 1 (1.8)Friends/Relatives 19 (22.1) 17 (21.5) 16 (22.6) 11 (19.3)Transitional Housing 2 (2.3) 18 (22.8) 8 (11.2) 7 (12.3)

Treatment Facility 3 (3.5) 1 (1.3) 1 (1.4) 2 (3.5)Incarcerated 1 (1.2) 1 (1.3) 0 (0.0) 0 (0.0)Permanent Housing 45 (52.3) 34 (43.0) 36 (50.8) 31 (54.3)

Other 6 (7.0) 4 (5.1) 5 (7.0) 3 (5.3)

As Figure 25 illustrates, when only clients for whom we have complete data are included, there was a decline in clients reporting living in permanent housing over time. Caution should be taken in generalizing these results to the entire population as this was a very small subset on the entire sample (31 out of 116). One would also note that permanent housing remained stable from 12 to 24 months.

Figure 25: Clients in Permanent Housing from Intake to 24 Months n=31

Family Planning

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Both instruments gathered categorical data relating to the use of various forms of birth control. In this section, we will compare the differences in methods over 24 months. Missing data and no responses have played an influential role in serving to obscure changes in data pertaining to birth control. Overall, only 30% (24 out of 81) of clients reported using birth control methods regularly or sporadically at intake. The proportion of clients using birth control increased to 43% (41 out of 95) at 6 months, remaining relative stable at 43% at 12 months, 45% at 18 months and 42% at 24 months. Table 13 reports client use of specific birth control methods. The patterns of usage indicate that condoms and birth control pills reflect the most common method. We also noted an notable increase in the use of tubal ligation and IUD over time. However, it is important to note that clients may have reported more than one method during one or more of the reporting periods.

Table 13: Methods of Birth Control from Intake to 24 Months

Method At Intake N=77 (%)

6 MonthsN=46 (%)

12 MonthsN=62 (%)

18 MonthsN=57 (%)

24 MonthsN=45 (%)

Condoms 31 (40.3) 12 (26.1) 14 (22.6) 19 (33.3) 15 (33.3)Pills 18 (23.4) 15 (32.6) 19 (30.6) 14 (24.6) 12 (26.7)Norplant 2 (2.6) 1 (2.2) 0 (0.0) 1 (1.8) 0 (0.0)Depo Shot 18 (23.4) 4 (8.7) 10 (16.1) 5 (8.8) 2 (4.4)Tubal Ligation 1 (1.3 ) 7 (15.2) 6 (9.7) 6 (10.5) 5 (11.1)IUD 2 (2.6) 4 (8.7) 7 (11.3) 9 (15.8) 10 (22.2)Other 5 (6.5) 3 (6.5) 6 (9.7) 3 (5.3) 1 (2.2)

As Figure 26 indicates, when we include only those cases where there is a complete dataset available from 6 to 24 months, we note an overall increase in the use of some form of birth control.

Figure 26: Overall Use of Birth Control Methods from Intake to 24 Months (n=45)

Target Children

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A Target Child is the child the client was pregnant with or had recently given birth to at time of Intake. In this section we will explore the custody and residence of Target Children as well as the nature and quality of connections that children have with services. We will also attempt to estimate the numbers of potential children suspected of having FASD.

1. Residence and Legal Custody of Target Children

Examination of the legal custody and residence of Target Children found that there were few substantive differences between patterns of residential placements and patterns of legal custody of Target Children. For the sake of brevity, we will focus on legal custody below. As our original variable list did not include custody at intake, we will examine Biannual data here.

Table 14 indicates the aforementioned trends with decreasing numbers arising from sample attrition over time, with the largest number of children remaining in the custody of the client. However, the second largest custodian is the Province or Tribal Authority. These children are likely in care. Although numbers of children in care decline over time, this decline is an artifact of sample attrition arising from a declining number of cases over time. When we plot only cases for which we have complete data, there is no change over time.

Table 14: Legal Custody of Target Children (6 to 24 months)

Custody With 6 Months N=102 (%)

12 MonthsN=92 (%)

18 MonthsN=88 (%)

24 MonthsN=68 (%)

Client 76 (74.5) 73 (70.2) 64 (72.7 ) 48 (70.6)State/Province or Tribal Authority 20 (19.6) 19 (18.3) 15 (17.0) 11 (16.2)

Other Family 2 (2.0 ) 4 (3.8) 6 (6.8) 2 (2.9)Adoptive Family 1 (1.0) 1 (1.0) 0 (0.0) 3 (4.4 )Bio Dad 2 (2.0) 5 (4.8 ) 0 (0.0) 1 (1.5)Child Deceased 1 (1.0) 2 (1.9) 3 (3.4) 3 (4.4 )

2. Target Child Connection to Services

Highlighting its importance to evaluation and monitoring of PCAP, the ASI Exit documents whether a Target Child is suspected or diagnosed with experiencing FASD. Despite having only 17 cases in which an ASI Intake was completed, clients reported on the ASI Exit that 6 out of 17 Target Children were suspected or diagnosed with FASD. Of these, 2 were reported as having a diagnosis of FAS, 1 as FAE or ARND and 3 as suspected of having FAS/FAE. However, one should not extrapolate the proportions of affected Target Children found in the ASI Exit to the total sample. These proportions may also be questioned in light of the difficulty in obtaining a diagnosis for pre-school age children.

In Table 15 below, we summarize the relative connections by Target Children to notable services. While the Biannuals do cover an array of services, for the sake of brevity we have included below only those services with ten or more responses. Of note is the number of clients who indicated that services from the FASD Clinic were either currently being received or were needed but not yet received. These findings suggest that as many as 24% of Target Children may be suspected of having FASD. Also of note is the high proportions of

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clients who reported that mental health and daycare services were needed. Other health services appear to be generally working well.

Table 2: Target Child Connections with Services from 6 to 24 Months

6 Months N=116 (%)

12 MonthsN=116 (%)

18 MonthsN=116 (%)

24 MonthsN=116 (%)

High Risk ClinicYes, Working WellYes, But ProblemsNo, But NeededNo, Not Needed

9 (10.7) 6 (7.5) 8 (11.4) 4 (7.7)0 (0.0) 1 (1.3) 0 (0.0) 1 (1.9)3 (3.6) 8 (10.0) 8 (11.4) 0 (0.0)72 (85.7) 64 (80.0) 54 (77.1) 47 (90.4)

FASD ClinicYes, Working WellYes, But ProblemsNo, But NeededNo, Not Needed

1 (1.2) 2 (2.5) 3 (4.2) 3 (5.7)1 (1.2) 0 (0.0) 0 (0.0) 0 (0.0)10 (12.0) 10 (12.7) 14 (19.7) 7 (13.2)71 (85.5) 67 (84.8) 54 (76.1) 43 (81.1)

Daycare CentreYes, Working WellYes, But ProblemsNo, But NeededNo, Not Needed

16 (16.3) 18 (20.0) 23 (29.5) 24 (40.0)2 (2.0) 3 (3.3) 10 (12.8) 4 (6.7)11 (11.2) 12 (13.3) 12 (15.4) 7 (11.7)69 (70.4) 57 (63.3) 33 (42.3) 25 (41.7)

Mental Health ServicesYes, Working WellYes, But ProblemsNo, But NeededNo, Not Needed

22 (22.0) 23 (25.8) 17 (20.5) 22 (33.3)6 (6.0) 10 (11.2) 7 (8.4) 4 (6.1)39 (39.0) 31 (34.8) 26 (31.3) 18 (27.3)33 (33.0) 25 (28.1) 33 (39.8) 22 (33.3)

Other Health ServicesYes, Working WellYes, But ProblemsNo, But NeededNo, Not Needed

51 (54.3) 43 (52.4) 43 (58.1) 31 (54.4)12 (12.8) 8 (9.8) 7 (9.5) 4 (7.0)7 (7.4) 12 (14.6) 8 (10.8) 9 (15.8)23 (24.5) 19 (23.2) 16 (21.6) 13 (22.8)

Connection with Other Services

This final section of behavioural outcomes focuses on connections by clients to other services. This component includes the largest number of variables in this evaluation. The ASI Intake alone contains 34 variables and the Biannuals contain 17 variables. For the sake of brevity, we will summarize services at Intake and during the period of 6 to 24 months by following the approach undertaken by Grant et al. 8 Here we will indicate the number/proportion of cases where good connections have been made. For comparative purposes we will list only those services that are included in both the ASI Intake and Biannuals. However, before examining connections, we will describe client need for services at Intake by listing those services identified as needed by PCAP clients.

Table 16 describes responses relating to service connections by clients as documented on the ASI Intake. Of particular importance are those services that clients have indicated that they need but have not yet connected to or accessed. Noteworthy are those where over 30% of clients have indicated such a need.

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These services include in order of the magnitude of need: family planning (64%), other support group (58%), mental health (49%), public housing (47%), day/childcare (47%), emergency funds (48%), other healthcare (47%), public school (45%), alcohol and drug support group (41.0%), legal services (37%) and emergency housing (31%).

Table 16: Service Connections By Clients at Intake

ServiceConnectedN (%)

Waiting ListN (%)

Not Connected But NeededN (%)

Not NeededN (%)

TotalN (%)

Healthcare Use 74 (84.1) 1 (1.1) 12 (13.6) 1 (1.1) 88 (100.0)Healthcare Use – Child 27 (48.2) 0 (0.0) 15 (26.8) 14 (25.0) 56 (100.0)

Other Healthcare 34 (43.0) 1 (1.3) 37 (46.8) 6 (7.6) 79 (100.0)Healthcare Other – Child 5 (10.0) 0 (0.0) 25 (50.0) 20 (40.0) 50 (100.0)

Mental Health 42 (47.7) 0 (0.0) 43 (48.9) 3 (3.4) 88 (100.0)A&D Support Group 42 (48.3) 2 (2.3) 36 (41.4) 7 (8.0) 87 (100.0)Other Support Group 24 (29.6) 2 (2.5) 47 (58.0) 8 (9.9) 81 (100.0)Food Bank 67 (79.8) 1 (1.2) 13 (15.5) 3 (3.6) 84 (100.0)Clothing/Supplies 57 (66.3) 0 (0.0) 19 (22.1) 10 (11.6) 86 (100.0)Emergency Funds 28 (33.7) 1 (1.2) 40 (48.2) 14 (16.9) 83 (100.0)Legal Services 41 (50.0) 1 (1.2) 30 (36.6) 10 (12.2) 82 (100.0)Public School 25 (30.1) 0 (0.0) 37 (44.6) 21 (25.3) 83 (100.0)Public Health Nurse 57 (67.1) 0 (0.0) 23 (27.1) 5 (5.9) 85 (100.0)Day/Childcare 30 (34.9) 0 (0.0) 40 (46.5) 16 (18.6) 86 (100.0)Public Housing 37 (42.0) 7 (8.0) 41 (46.6) 2 (2.3) 88 (100.0)Emergency Housing 38 (45.2) 0 (0.0) 26 (31.0) 18 (21.4) 84 (100.0)Family Planning 20 (23.0) 3 (3.4) 56 (64.4) 7 (8.0) 87 (100.0)

To compare changing patterns of client service needs over time, we have presented reports from clients who reported that they need services but have not yet connected to them from intake to the 24 month Biannual. Given the differences between the ASI Intake and Biannual, we have collapsed some categories for comparison purposes including food bank and clothing as well as support system/group. As indicated in Table 17, there are substantial declines in service needs across all service categories. We found a dramatic reduction in service needs from intake for healthcare, basic needs, emergency funds, legal services, public school, public health nurse, childcare, public and emergency housing services. There are more modest declines in service needs evident for support groups and family planning services.

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Table 17: Client Service Needs from Intake to 24 months

Service Needs IntakeN (%)

6 MonthsN (%)

12 MonthsN (%)

18 MonthsN (%)

24 MonthsN (%)

Healthcare Use 12 (13.6) 1 (1.0) 4 (3.8) 2 (2.2) 1 (1.4)Other Healthcare 37 (46.8) 7 (8.0) 13 (12.6) 11 (12.1) 10 (13.9)Mental Health 43 (48.9) 36 (38.3) 32 (30.2) 29 (32.2) 21 (28.4)Support Group 37 (49.7) 25 (29.1) 25 (24.0) 23 (25.6) 16 (22.2)Basic Needs* 16 (18.8) 2 (2.1) 2 (1.9) 1 (1.1) 3 (3.9)Emergency Funds 40 (48.2) 3 (13.6) 7 (6.5) 5 (5.6) 7 (9.1)Legal Services 30 (36.6) 3 (3.2) 9 (8.5) 5 (4.9) 5 (6.9)Public School 37 (44.6) 0 (0.0) 0 (0.0) 0 (0.0) 0 (0.0)Public Health Nurse 23 (27.1) 0 (0.0) 5 (7.8) 2 (3.4) 2 (3.3)Day/Childcare 40 (46.5) 11 (12.2) 13 (13.0) 9 (10.6) 8 (12.3)Public Housing 41 (46.6) 6 (27.3) 19 (20.9) 16 (20.5) 12 (16.7)Emergency Housing 26 (31.0) 4 (3.4) 9 (8.7) 10 (11.2) 4 (5.3)Family Planning 56 (64.4) 33 (37.9) 36 (34.6) 36 (39.1) 18 (24.7)*Note: Basic needs includes average of food bank and clothing and supplies items.

Domestic Violence

Another way in which PCAP aims to help women stabilize their lives is through addressing issues of domestic violence. In this section we will offer a profile of client needs at Intake relating to domestic violence and examine any changes arising over 24 months.

At Intake, 23% of clients (19 out of 84 who we had data on) reported being currently in an abusive relationship. Approximately 5% of clients reported that their relationship was physically abusive, 6% reporting psychological abuse and 12% indicating that their relationship involved a combination of these types of abuse. Program supervisors suggest two factors which may help to interpret these findings: First, they noted that many clients at intake are in crisis, at least some of which may have recently separated from their abusive partners. For this reason, they may be accurately reporting that they are not in an abusive relationship at that time. Another factor may be reluctance by clients to disclose domestic violence, a reluctance that may be overcome as they develop rapport with their mentor/case manager. Of those who reported on their need for domestic violence services, 54.0% indicated that they had no need for service, while 22% reported that they needed more services. Another 14% indicated that their relationship was stable with the support of services, while 10% reported that they were in a dangerous situation and experienced an urgent need for services.

On the ASI clients are also asked if they were receiving domestic violence services. Of the 61 who responded, 33% indicated that they were currently receiving services and 41 (67%) reported that were not receiving services but were in need of them. Of those who were receiving services 95% reported a good connection with their services at intake.

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Figure 27 displays the number of clients for which we have complete data who reported currently being in an abusive relationship, which increased gradually from 6 to 24 months.

Figure 27: Clients Reporting of Being in an Abusive Relationship from 6 to 24 months (n=62)

Finally, we examined client connections with domestic violence services. As noted in Table 18, the same trends with sample attrition are evidenced by an increasing proportion of missing data. Among the valid cases, the largest number of clients (ranging from 40% to 63%) reported that they did not need domestic violence services. Little change over time is indicated in the quality of connections with domestic violence services.

Table 18: Client Connections with Domestic Violence Services (6 to 24 months)

DV Services 6 MonthsN=104 (%)

12 MonthsN=90 (%)

18 MonthsN=79 (%)

24 MonthsN=62 (%)

Yes, Working Well 7 (6.7) 4 (4.4) 5 (6.3) 4 (6.5)Yes, But Problems 6 (5.8) 6 (6.7) 6 (7.6) 2 (3.2)No, But Needed 18 (17.3) 15 (16.7) 11 (13.9) 10 (16.1)No, Not Needed 73 (70.2) 65 (72.2) 57 (72.2) 46 (74.2)

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Subsequent Exposed Births

Despite the central importance of determining whether PCAP clients experience subsequent exposed births, limitations in the available data render determination of this key element a much greater challenge than needed. Indeed, gathering this data would be quite simple if ASI Exit questionnaires were routinely completed. However, as with earlier variables, we needed to combine available Biannual data with the limited number of ASI Exit questionnaires to produce meaningful findings. Consequently, our operational definition for a subsequent alcohol/drug exposed birth was:

1. A reported subsequent exposed birth on the ASI Exit questionnaire or reported alcohol/drug use during pregnancy on the ASI Exit; or

2. A reported pregnancy coinciding with a period of reported alcohol/drug use on a Biannual.

This definition is limited in that using Biannual data in this way, there is the potential for an inflated number of exposed births, given the likelihood of pregnancies overlapping more than one reporting period as well as the potential for clients to remain sober during pregnancy and use alcohol and/or drugs before or after the birth of a child. Given the stigma associated with exposed birth, it is also likely that any self-report would underestimate the actual number of exposed births. Table 19 reveals a total of 69 births over a 24 month period among PCAP clients who reported births on Biannuals. One will note that 49 (71%) of births occurred during the first six months of PCAP service. However, one must also note the escalating proportion of missing/no responses over this period.

Table 19: Pregnancies Over 24 Months

Total Births At 6 Months N=102 (%)

At 12 Months N=91 (%)

At 18 Months N=81 (%)

At 24 MonthsN=59 (%)

No 35 (34.3) 61 (67.0) 61 (75.3) 44 (74.6)Gave Birth to Target Child 49 (48.0) 9 (9.9) 0 (0.0) 0 (0.0)Gave Birth to Another Child 0 (0.0) 1 (1.1) 6 (7.4) 4 (6.8)Terminated 4 (3.9) 8 (8.8) 6 (7.4) 3 (5.1)Miscarried 2 (2.0) 1 (1.1) 1 (1.2) 1 (1.7)Stillbirth 1 (1.0) 0 (0.0) 0 (0.0) 0 (0.0)Currently Pregnant 11 (10.8) 11 (12.1) 7 (8.6) 7 (11.9)

Table 20 illustrates the number of births that may have been exposed to alcohol and drugs, reported by PCAP clients over 24 months. While missing data continues to complicate the analysis, 20 of 50 (40%) of births occurred during periods where clients did not abstain from alcohol for the entire 6 month reporting period. Another 17 out of 50 (34%) births were reported during 6 month periods where clients reported using drugs. Finally, 13 out of 50 (26%) births occurred during periods where clients reported using both alcohol and drugs. It is also noteworthy that, 42 out of 50 (84%) of births occurred during the first 6 months of service. Potentially demonstrating the beneficial impacts of PCAP only 8 (16%) of births may have potentially been exposed to alcohol over later periods. Again, as noted above, limitations in the data do not allow us to infer that these children were actually exposed to alcohol and/or drugs during pregnancy.

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Table 20: Alcohol and Drug Use Coinciding with Births Over 24 Months

Birth Use At 6 Months 12 to24 Months Total

Alcohol Drugs Both Alcohol Drugs Both Alcohol Drugs BothN=29 (%)

N=31 (%)

N=24 (%)

N=5 (%) N=3 (%)

N=1 (%)

N=34 (%)

N=34 (%) N=25 (%)

Yes 15 (51.7)

15 (48.4)

12 (50.0)

5 (100%)

2 (66.7)

1 (100)

20 (58.8)

17 (50.0) 13 (52.0)

No 14 (48.3)

16(51.6)

12 (50.0)

0 (0.0) 1 (33.3)

0 (0.0) 14 (41.2)

17 (50.0) 12 (48.0)

Main findings

Given the nature of the work conducted by PCAP mentors, it can be difficult to recognize the successes and accomplishments of the PCAP program. As one participant explained: “It’s hard to measure all the births that we’ve prevented… How do you measure babies that weren’t born?” It is therefore important that we touch on and highlight some of the tangible accomplishments that Alberta PCAP sites have achieved so far, keeping in mind that the full impact of this program is difficult to measure.

Alberta’s PCAP programs appear to be operating with fidelity relative to the aspects of the original PCAP Model, with importance placed on the development of supportive and trusting relationships and advocating for clients.

The number of women served by PCAP continues to grow. Clients are reporting positive experiences and satisfaction with the services they have received

through PCAP. PCAP sites that have been successful at coordinating and collaborating with other service providers

report positive experiences and outcomes. Throughout the focus groups, PCAP staff demonstrated passion and commitment to their work with

the population that they serve. PCAP participants report over the course of their time in the program, increases in employment and

sobriety and decreases in reports of welfare as a source of income substance abuse.

RecommendationsIn light of the pressing issues that continue to exist in relation to PCAP programming, the following is a list of recommendations for moving forward with the goals of increasing effective service delivery and reducing or eliminating the incidence of maternal alcohol consumption during pregnancy, thereby preventing occurrences of children born affected by FASD

Continue using a relationship-based model of service delivery, as this aspect is considered to be the core element of PCAP’s success. Furthermore, explore ways to support and encourage relationship-building and client advocacy within PCAP.

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Continue promoting and supporting the health and well-being of PCAP staff. This might involve becoming aware of possible issues facing staff that may increase the likelihood of burnout, and developing supports to maintain staff well-being.

Consider revising the current funding model with an emphasis on making sustainable funding available for PCAP and similar long-term programs. This will allow PCAP programs to make long-term plans and decisions, and will give PCAP staff piece-of-mind in knowing that their commitment to helping their clients over the course of three years will not be jeopardized by short-term funding decisions.

Continue increasing community awareness about the needs of individuals with FASD and the struggles faced by at-risk mothers. This includes building capacity and understanding within individuals working for various government agencies and related programs (e.g., housing, unemployment). Increasing awareness and educating staff could involve in-service courses for government employees on what to expect and how best to work with this client population. A shared understanding of how to best support PCAP clients would increase the effectiveness of service delivery across multiple areas.

Recognize that PCAP programs in different geographical areas (e.g., rural versus urban) will experience differing challenges and situations. Be prepared to support necessary changes to and specialization of PCAP programs based on their location and the needs of the communities they serve. This will ensure that they are most effectively serving their specific client populations.

Review agencies that are involved in providing services to PCAP clients to determine how they are collaborating (both with PCAP and within their own organizations) and examine where gaps in coordinated service delivery remain. This should also include looking for ways to streamline applications for services between agencies and should further explore coordinating services to support clients upon their planned exit from PCAP. It is recommended that targeted prevention programs such as PCAP be expanded, especially in rural areas, in order to increase access to services and to further prevent or reduce alcohol consumption during pregnancy and the incidence of FASD throughout Alberta.

Expanding the role of the PCAP Council to support training of the administration of both the Intake/Exit ASI, and the Biannual Interview.

Considerations for Year 7 Evaluation

The current evaluation focused on only one FASD prevention program. Furthering the results of the present evaluation, it will be important in Year 7 to review rates of alcohol use among women across other FASD-related programs and services to get a broader picture of the current state of FASD prevention efforts in Alberta. Furthermore, in relation to PCAP, the addition of qualitative data from the point of view of PCAP clients may be helpful in providing further information about specific aspects of PCAP service delivery that are most effective.

In order to improve the clarity of future evaluations, common definitions and procedures will need to be adopted with respect to handling the completion/closure of cases. For example, although program completion has been defined as closure following completion of three years of service, some clients may be

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ready to terminate service after two years. Would it be prudent to classify such clients as having not completed the program? Similarly, with regard to closure of client files, some agencies have kept files open up to three years despite limited contact with clients, other have closed inactive files (with provision for re-enrolment) after six months.

Program supervisors noted the value of the PCAP Model Assessment as an evaluative tool for gauging program fidelity. However, they recommended that this instrument needs to reflect the Alberta context. As noted earlier, some of the standards need modification and some of the languaging needs to be changed to reflect the distinctive nature of the Alberta context and the regional/programmic differences that have arisen across the PCAP sites.

Program supervisors also noted the value of both the Intake/Exit ASIs and the Biannual Interview as important ingredients in evaluating client progress and outcomes. However, this evaluation found substantial limitations in the completion and use of these instruments across PCAP sites. Program supervisors also noted that Intake/Exit ASIs and Biannuals will be included in the new information system. We strongly support the adoption of a consistent data collection regime across PCAP sites.

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References

1. KPMG. Alberta FASD Service Networks Provincial Formative Evaluation Report, 2011.2. Grant T, Huggins J, Connor P, Youngblood Pedersen J, Whitney N, Streissguth A. A pilot community

intervention for young women with fetal alcohol spectrum disorders. Community Mental Health Journal. Dec 2004 2004;40(6):499-511.

3. Creswell JW. Qualitative inquiry and research design: Choosing among five approaches. 2nd ed. Thousand Oaks, CA: Sage Publishing; 2007.

4. Banks M. Visual Methods in Social Research. London: Sage Publications; 2001.5. Rose G. Visual methodologies: An introduction to the interpretation of visual materials. London: Sage

Publications; 2001.6. Koelsch L. Unlabeled sexual experiences: Quilting stories and re-envisioning discourses. Miami:

Psychology, Miami University; 2008.7. Beutler L, Machado P, Neufeldt S. Therapist variables. In: Bergin A, Garfield S, eds. Handbook of

psychotherapy and behavior change 4th ed. New York: Wiley; 1994:229-269.8. Grant TM, Ernst CC, Streissguth A, Stark K. Preventing alcohol and drug exposed births in Washington

State: Intervention findings from three Parent-Child Assistance Program sites. American Journal of Drug and Alcohol Abuse. 2005;31(3):471-490.

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Outcome 2Adults, children, and youth suspected of being affected by FASD have access to timely and affordable diagnostic assessment services

Evaluation Question 2a:Is there evidence of improved access to high quality FASD assessment services provided by multi-disciplinary teams?

Prepared by:Cheryl PothJacqueline PeiACCERT Evaluation Team Members:David St. Arnault, Jenelle Job, Ellis Chan, Wence Leung, Sukhpreet Tamana, Kendra McCallum, Laura Gould, Virginia Tze, Katy Wyper, and Erin Atkinson.

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Acknowledgements

This document outlines the work completed by Drs. Jacqueline Pei and Cheryl Poth (Co-Principal Investigators) and the Alberta Clinical and Community-based Evaluation Research Team (ACCERT) which is comprised of graduate student research assistants: David St. Arnault, Jenelle Job, Laura Gould, Wence Leung, Ellis Chan, Karon Dragon, Virginia Tze, Sukhpreet Tamana, Katy Wyper, Erin Atkinson, and Kendra McCallum at the University of Alberta on the Year Five Evaluation of the FASD 10 Year Strategic Plan from September 2011 to August 2012. We would also like to acknowledge the contributions of the Government of Alberta and community partners: Shelley Birchard, Denise Milne, Teresa O’Riordan, Hazel Mitchell, Janice Penner, and Tara Hanson.

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Executive Summary

Adults, children, and youth suspected of being affected by FASD have access to timely and affordable diagnostic assessment services

Evaluation Question 2a:

Is there evidence of improved access to high quality FASD assessment services provided by multi-disciplinary teams?

Data Sources:

Major source(s): Interviews with clinic directors and clinicians across AlbertaComplementary source(s): Document review of the KPMG Provincial Network Evaluation Report and the Alberta FASD Inventory (prepared for FASD Supports Services Council of Alberta)

Findings:

1. Access to FASD assessment and diagnostic services has been improving over the years. There are now more clinics, more services for adults, and more assessments completed annually. However, there are still challenges with clinic services that require attention such as difficulty in finding proper follow-up support for adult clients after the diagnostic process is completed.

2. Clinic teams were reported to be achieving the desired standard of practice through utilizing a multi-disciplinary approach. Most clinics consisted of at least a clinic coordinator, pediatrician, occupational therapist, speech language pathologist, psychologist, neuropsychologist, and social worker.

3. Clinics also achieved an increasingly consistent standard of practice by following a general procedure adhered to by most clinics, with only slight variations between clinics. This is congruent with current recommendations for best practice.

4. Another standard of practice achieved was consistency in diagnostic criteria, with most clinics reporting to using the University of Washington 4-Digit Diagnostic Code.

5. A number of challenges to assessment and diagnosis still remain. These include long waitlists, a lack of sustainable funding, the need for follow-up assessments, a lack of post-assessment services, a lack of community awareness about FASD, and the need for more coordination between agencies and services.

Recommendations:

As a result of our analysis of the Alberta FASD assessment and diagnostic clinics and the challenges they are currently facing, the following is a list of recommendations for moving forward in supporting the further development and success of FASD assessment and diagnostic services in Alberta:

Address the issue of clinic understaffing by creating more full-time positions for needed professionals.

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Encourage each clinic member to keep an inventory of the assessment tools they are using, to be updated annually. This list could also include tools that clinic members would like to be using but that are difficult to access. This list can then be routinely used to ensure that tools are up-to-date and are consistent with the diagnostic systems used by all clinics.

Consider revising how funding decisions are made. This includes the amount of funding available for clinics. Clinics would benefit from increased funding to hire more staff, offer more clinic days, and to support follow-ups with clients. Knowledge of the availability of long-term funding would help the clinics to make long-term plans and decisions about staffing.

Support clinic staff’s access to the most current research and best practices in the area of FASD assessment and diagnosis. This could include creating a formalized and easy to access system of distributing research to clinics, or having all clinic members attend FASD conferences instead of just a few members if any at all.

Continue to support FASD frontline workers in advocating for the needs of individuals with FASD, ensuring that FASD receives the attention it requires in government, and that FASD awareness is raised in the general community.

Review the current post-assessment supports and services that are available for clients with FASD, especially adults. In addition, consider reviewing and revising how clients affected by prenatal alcohol exposure are funded and supported. Many times clients with high needs do not meet full criteria for a diagnosis, and are therefore limited in their ability to access services. Consider funding based on function as opposed to a formal diagnosis.

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Table of Contents

Outcome 2.......................................................................................................................................................................................... 95Evaluation Question 2a................................................................................................................................................................ 95

Method................................................................................................................................................................................................. 95Data sources...................................................................................................................................................................................... 95Findings............................................................................................................................................................................................... 95

1) Access to Assessment and Diagnostic Services.............................................................................................................. 952) Clinic Composition.................................................................................................................................................................... 973) The Assessment Process.......................................................................................................................................................... 984) Cost for Assessment Services.............................................................................................................................................. 1015) Challenges to the Assessment Process............................................................................................................................ 101

Knowledge Mobilization...........................................................................................................................................................104Summary.......................................................................................................................................................................................... 104Recommendations.......................................................................................................................................................................105Considerations for Year 7 evaluation..................................................................................................................................105References....................................................................................................................................................................................... 106

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Adults, children, and youth suspected as being affected by FASD have access to timely and affordable diagnostic and assessment services.

Research Report: Outcome 2

Outcome 2 :

Evaluation Question

2a: Is there evidence of improved access to high quality FASD assessment services provided by multi-disciplinary teams?

Method

The Alberta Clinical and Community-based Evaluation Research Team (ACCERT) was formed to address Evaluation Questions 2a, 5b, c, and d, and 6 a, b, c, d, and e from Outcomes 2, 5, and 6. It is important to note that the Methods section for this outcome (Outcome 2, Question 2a) can be found in Appendix A.

Data sources

Major source(s): Interviews with clinic directors and clinicians across Alberta

Complementary source(s): Document review of the KPMG Provincial Network Evaluation Report and the Alberta FASD Inventory (prepared for FASD Supports Services Council of Alberta)

Findings

1) Access to Assessment and Diagnostic Services

Based on data collected for the current evaluation, there is evidence of improved access to high quality FASD assessment services provided by multi-disciplinary teams across Alberta. Specifically, our document review of fiscal Service Network reports, dated between January 2008 and March 2011, show an increase in the number of funded service providers (6 in January 2008 to December 2008 compared to 17 in April 2010 to March 2011), and an increased number of FASD assessments in this time period with 0 to 6 year old children (29 to 87), 7 to 18-year-old youth (73 to 240), and 18+ year old adults (27 to 74) throughout the province. As well, a review of the Alberta FASD Inventory and interviews with clinic members revealed that the age of individuals seen at FASD clinics in Alberta ranged from 1 to 13 years old, with at least seven out of twelve clinics interviewed seeing clients 5 years old or younger. This indicates that there has been a significant increase in access to assessment services for children. There has also been a significant increase for adults, with eight out of twelve clinics interviewed reporting that they also provide assessment services to adults. Five of these eight clinics have existed for five years or less. Our analysis suggests that there are improvements across a range of areas for FASD assessment services in clinics due to recent increases in the number of clinics, access for adults, and overall number of assessments across child, youth, and adult clients.

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Based on the information gathered through interviews with clinic members and directors, the number of assessments completed annually by multi-disciplinary teams varies both between clinics and between individuals practicing in the same clinic. Overall, our analysis indicates that assessment caseloads range from 12 to 180 clients per year, per clinic. This could reflect an inconsistent spread of funding across the province, whereby factors such as number of clinic days and staff are not evenly distributed. Furthermore, although this could be explained by an inconsistent demand across the province for clinical services, the fact that all clinics interviewed indicated that they would like more funding to house more clinic days suggests that there is high demand across the province.

Emerging Understandings:

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Identification of individuals with FASD through assessment and diagnosis is a necessary component of prevention planning and outcomes evaluation.

Pressing Issues:

There is a strong need to continue to develop assessment services through increased clinics and increased capacity of existing assessment services, especially for adults.

Evidence Towards Outcomes:

From the period of January 2008 to March 2011, there was an increase in number of funded service providers from 6 to 17, indicating increased access to services across the province.

There was an increased number of FASD assessments with children 0 to 6 years old (29 to 87), youth 7 to 18 years old (73 to 240), and adults 18+ years old (27 to 74) throughout Alberta, indicating that the province is meeting the assessment needs of more of the FASD population.

2) Clinic Composition

Individuals working in Alberta FASD clinics come from a range of disciplines. All twelve clinics interviewed have at least five different disciplines in their team, with at least ten having an occupational therapist, nine having a speech language pathologist, eight having a psychologist, nine having a designated clinic coordinator, seven having a pediatrician, and six having a physician. Team members included clinic coordinators, pediatricians, occupational therapists, speech language pathologists, psychologists, neuropsychologists, social workers, physical therapists, registered nurses, public health nurses, lawyers, justice representatives, school board representatives, teachers or teacher aids, medical geneticists, developmental pediatricians, psychometrists, support workers (e.g., nutritionists), and career counselors. Overall, it appears that all clinics consist of members from different professions with a variety of areas of expertise to offer during the assessment process. However, because many of these professionals are employed only part-time, clinic members reported feeling the need to complete tasks that are not under their area of specialty, and having less time to fully dedicate focus to their own roles. As one member remarked:

“We have kids doing direct medication management and it’s kind of off the side of our desk, if we would have had more funding we would have been able to have a medication nurse to answer some of these calls from these families, but without funding it’s off the side of your desk.”

This quotation draws attention to the importance of ensuring that all clinics are equipped with proper support staff to ensure that each member is working as effectively as possible in their area of expertise.

Emerging Understandings:

Use of a multi-disciplinary approach within clinics is a necessary evidence-based standard of practice to ensure accuracy and consistency in assessment practice.

Pressing Issues:

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Clinics report having a number of professionals from various backgrounds on their multi-disciplinary teams. However, very few of these individuals are employed full-time, making it necessary for others to perform their duties in their absence. Without full-time support, staff must “spread themselves thin” across roles and are not able to concentrate of their specific role in the FASD assessment process.

Evidence Towards Outcomes:

All clinics across the province are attaining a level of compliance with the standards of practice identified in the Canadian Diagnostic Guidelines, which state that they must incorporate a multi-disciplinary approach in their team makeup.

3) The Assessment Process

Based on our analysis of clinic member interviews, a general format for the team approach to assessment and diagnosis can be identified, as well as individual adjustment as each clinic sees fit for its needs. This indicates success in using a standardized format across the province, and is consistent with current best practice. In addition, while adult and child cases tend to follow a similar assessment/diagnosis format, there tends to be different personnel involved (e.g., justice representatives). More detailed information for specific clinics can be found in Appendix B. In summary:

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Emerging Understandings:

A consistent diagnostic process supports accessible assessment results that can be readily interpreted and lead to intervention provided by any FASD service personnel.

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Pressing Issues:

Although clinic coordinators identified a basic process of assessment, they were unable to comment specifically on what tools their teams were using for assessment and diagnosis, since each team member may differ in the tools they prefer. However, information about what assessment tools are being used is important in ensuring that they are current and coincide with the diagnostic system being used by the clinic.

Evidence Towards Outcomes:

All clinics across the province are following a high level of consistency in their assessment process, yet maintain sufficient flexibility to address individual clinic and client needs.

4) Cost for Assessment Services

Although a complete estimate of cost is difficult to ascertain based on our analysis of clinic member interviews, the Network Evaluation report suggests that the cost for assessment and diagnostic services can be up to $4,000 per client. Our analysis of these interviews and document review of the Alberta FASD Inventory indicates that although government bodies fund a majority of assessment services, three out of twelve clinics charge an individual fee for services. Clinics utilize government funding on a per-needs basis, and with cases deemed as less critical, clients are expected to cover their own costs.

Emerging Understandings:

Government funding needs to continually provide clinics with sufficient resources so that they can meet the diagnostic needs of the community.

Pressing Issues:

When serving the FASD-affected population, the individual fee, for those clinics where this is required, may make it difficult for some clients to afford assessment services.

Evidence Towards Outcomes:

Government funding has been provided to all clinics interviewed, and at least three out of twelve clinics interviewed also charge an individual fee for service as well to support their work.

5) Challenges to the Assessment Process

Despite the signs of improved access to high quality FASD assessment services provided by multi-disciplinary teams across the province, Alberta clinics are still encountering a number of challenges that warrant consideration. These challenges include:

Waitlists: The majority of the clinics reported having waitlists for assessments. Our analysis of clinic member interviews and document review suggests that clinics struggle to meet the demands of their communities, and often do not have the diagnostic capacity to cope with FASD assessment service needs. Members explained that this might be due to a number of factors. First and foremost, clinic members

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reported that the amount of assessments completed was directly tied to the amount of funding available, and more funding would allow them to provide services more days of the year and to have more full-time staff. In addition, wait times also exist for reasons outside of the clinics’ control such as waiting for the results of psycho-educational assessments, which is a pre-requisite for the FASD assessment process in at least one of the clinics.

A lack of sustainable funding: Clinic members reported that they find it difficult to plan for long-term service delivery when they are uncertain about the availability of funding in the future. Clinic members are therefore limited to short-term plans and schedules that ultimately have an impact on their service delivery (noted by clinic members). One clinic member comment on long term funding: “…sustainable funding. I mean we have [funding source removed for confidentiality], but from year to year we can’t really plan with that right?”

Need for longitudinal assessments: Clinic members reported a desire to follow up with clients to evaluate the need for further assessments in the future. Particularly, clinic members were concerned about the transition periods between childhood and adolescence, and adolescence and adulthood, recognizing that their clients’ situations and needs may change as they continue to grow and develop. Specifically, clinic members noted that it would be especially important to continue to evaluate a child’s level of independence and decision-making skills as they mature. As one clinic member noted: “When we see a kid at 8 we don’t know what they are going to look like when they are 18. So I would love to see the child over time”.

Lack of FASD awareness: Clinic members noted that they struggle to receive funding because FASD is not seen as a prominent and critical issue facing Albertans. They also reported feeling as though assessment and diagnostic services are not covered enough by Canada’s health care system, and that there are not enough resources being put into place to make that coverage possible. As one clinic member stated about the struggle to make FASD a more critical issue:

“I would love to see it [assessment and diagnosis] to be something to be covered by the Alberta Health Care or Canada Health Care. I think it is terrible that it is so obvious out there. It is something they struggled with and even we struggled with being able to provide the support. You see them constantly on the street because they are waiting for that diagnosis. Even once they got the diagnosis, it is still up to years for AISH to kick in. They are still going homeless… How hard is it to get someone who is on the street to get off drugs and alcohol and that pregnancy. Why can’t it be easier?”

Lack of post-assessment support services : Clinic members also noted that although the assessment process seems to be well on its way to maturity, finding post-assessment supports and services for clients is often a difficult challenge. Specifically, they noted that supports and services through addictions, housing, and mental health are lacking in their respective communities. Especially with adults, clinic members reported that there are often no services available for them after completion of the assessment process. As one member noted:

“I would do a lot of work on the supports and services end of things, be[cause] I see that’s where we are lacking in terms of getting that up and to where it needs to be to support individuals coming through the assessment diagnostic process, especially on the adult end of things… Like I said, we are assessing, but there’s nothing to connect them to.”

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Funding eligibility constraints: Clinic members also reported that they struggle with the eligibility criteria for client funding, noting that there are significant challenges in separating out which effects are the result of FASD and which result from the large number of potential co-morbid factors such as abuse and trauma that are present in the lives of their clients. Specifically, clinic members were concerned with funding being directly tied to a formal diagnosis, which tends to leave many clients without supports or services because they do not meet all of the formal criteria, even if they are experiencing significant impairment in their daily lives. As one member stated:

“You can have that list of diagnoses but for anyone looking at that report or trying to understand that child, what they really need to know is not those big words that talk about all those multiple diagnoses and what’s going on and what causes what, but it’s how then does that really affect their ability to adapt to life and function in life and so on. And so we try as much as possible, and this is something we have been focusing on the last year in particular, to articulate reports and recommendations in a functional way, but then, what happens we are in a world where funding is based on diagnosis and so it would be really great, and I think this is happening, but what I think would be really great is when we are able to look at funds based on function and adaptability as opposed to diagnosis.”

Need for coordination between agencies: Clinic members noted that it is often challenging to work with multiple agencies due to the issue of client confidentiality. For example, clinic members noted that confirming prenatal exposure to alcohol is a significant difficulty as it requires accessing confidential birth and medical records. Clinic members also noted that it would be more efficient if: “everyone was on the same page,” and expressed a desire for more effective communication between agencies that they commonly work with.

Difficulty accessing research and best practices: Clinic members noted that having easier and more regular access to research and best practices would be helpful to their work. For example, one clinic member emphasized that having funding available for the entire team to attend an FASD conference would be helpful, instead of just sending a few members at a time. As well, clinic members noted that there is no line of communication for accessing and distributing research other than informal methods, such as having clinic team members who held a dual role as clinicians and academics or researchers.

Pressing Issues:

There are waitlists for assessments at the majority of clinics. This could be attributed to a lack of funding, which limits the number of assessments conducted per year, and also the lengthy nature of the assessment process.

It is difficult to plan for long-term service delivery when clinic members are uncertain about the sustainability and amount of funding made available to them in the future.

There is concern around the developmental transitions that occur for clients (e.g., childhood to adolescence, and adolescence to adulthood), creating a need for longitudinal assessments.

FASD is not seen as a critical issue for Albertans, and so sometimes funding can be difficult to access on that basis.

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Post-assessment services and supports such as addictions, housing, and mental health are lacking, especially for adults.

If funding is directly tied to a formal diagnosis, it may leave many clients without support because they do not meet all the formal criteria due to co-morbidity with other diagnoses.

There is a need for coordination between clinics, but client confidentiality makes information sharing challenging.

Clinic members requested the need to regularly access research and best practices, as well as have more formal communication line with FASD researchers.

Knowledge Mobilization

A knowledge mobilization (KM) plan was developed by the evaluation project coordinating committee and the ACCERT evaluation team to communicate research and evaluation findings to the Government of Alberta and participating stakeholders. The KM plan also aimed to communicate findings to practitioners and scholars to increase awareness and support dialogue between these communities. The KM activities included the final evaluation document, distribution of meeting summaries and highlights to the ACCERT evaluation team members, and presentations at conferences.

Abstracts were submitted to various provincial, national, and international conferences in order to disseminate the research related to the findings from the FASD evaluation project. See Appendix C for the full list of accepted conference abstracts.

Summary

Access to FASD assessment and diagnostic services has been improving over the years. There are now more clinics, more services for adults, and more assessments completed annually. However, there are still challenges with clinic services that require attention such as difficulty in finding proper follow-up support for adult clients after the diagnostic process is completed.

Clinic teams were reported to be achieving the desired standard of practice through utilizing a multi-disciplinary approach. Most clinics consisted of at least a clinic coordinator, pediatrician, occupational therapist, speech language pathologist, psychologist, neuropsychologist, and social worker.

Clinics also achieved an increasingly consistent standard of practice by following a general procedure adhered to by most clinics, with only slight variations between clinics. This is congruent with current recommendations for best practice.

Another standard of practice achieved was consistency in diagnostic criteria, with most clinics reporting to using the University of Washington 4-Digit Diagnostic Code.

A number of challenges to assessment and diagnosis still remain. These include long waitlists, a lack of sustainable funding, the need for follow-up assessments, a lack of post-assessment services, a lack of community awareness about FASD, and the need for more coordination between agencies and services.

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RecommendationsAs a result of our analysis of the Alberta FASD assessment and diagnostic clinics and the challenges they are currently facing, the following is a list of recommendations for moving forward in supporting the further development and success of FASD assessment and diagnostic services in Alberta:

Address the issue of clinic understaffing by creating more full-time positions for needed professionals.

Encourage each clinic member to keep an inventory of the assessment tools they are using, to be updated annually. This list could also include tools that clinic members would like to be using but that are difficult to access. This list can then be routinely used to ensure that tools are up-to-date and are consistent with the diagnostic systems used by all clinics.

Consider revising how funding decisions are made. This includes the amount of funding available for clinics. Clinics would benefit from increased funding to hire more staff, offer more clinic days, and to support follow-ups with clients. Knowledge of the availability of long-term funding would help the clinics to make long-term plans and decisions about staffing.

Support clinic staff’s access to the most current research and best practices in the area of FASD assessment and diagnosis. This could include creating a formalized and easy to access system of distributing research to clinics, or having all clinic members attend FASD conferences instead of just a few members if any at all.

Continue to support FASD frontline workers in advocating for the needs of individuals with FASD, ensuring that FASD receives the attention it requires in government, and that FASD awareness is raised in the general community.

Review the current post-assessment supports and services that are available for clients with FASD, especially adults. In addition, consider reviewing and revising how clients affected by prenatal alcohol exposure are funded and supported. Many times clients with high needs do not meet full criteria for a diagnosis, and are therefore limited in their ability to access services. Consider funding based on function as opposed to a formal diagnosis.

Considerations for Year 7 evaluation

Although specific questions pertaining to the tools used and the costs associated with the FASD assessment process were asked during interviews with clinic coordinators, the current evaluation was unable to ascertain these answers. Therefore, future evaluations should address the following:

Future evaluations may consider gathering detailed information from clinic practitioners about the battery of assessment tools they typically use, which may vary from person to person and clinic to clinic.

It would be helpful for future evaluations to determine the breakdown of the costs per assessment for each clinic to help guide funding models. This would include (but not be limited to) the actual cost to clients, and the cost to run the entire clinic per assessment.

Future evaluations may consider operationally defining the term “cost” as it relates to assessment (i.e., cost to the client, cost to the government, cost to perform the assessment, cost of materials).

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With this definition, more detailed information should be collected specific to the affordability of FASD assessments in Alberta.

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References

1. Leonardson GR, Loudenberg R. Risk factors for alcohol use during pregnancy in a multistate area. Neurotoxicology & Teratology. 2003;25:651-658.

2. Creswell JW. Qualitative inquiry and research design: Choosing among five approaches. 2nd ed. Thousand Oaks, CA: Sage Publishing; 2007.

3. Patton MQ. Qualitative research and evaluation methods. 3rd ed. Thousand Oaks, CA: Sage Publishing; 2002.

4. Creswell JW. Research design: Qualitative, quantitative and mixed methods approaches. 3rd ed. Thousand Oaks, CA: Sage Publishing; 2009.

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Outcome 3:Individuals affected by FASD and their caregivers have coordinated access to support and services to meet their needs.

Evaluation Question 3a:What proportion of individuals diagnosed in Alberta with FASD are receiving services to help manage their disability?

Evaluation Question 3b:How has service coordination been facilitated to meet the support needs of individuals diagnosed with FASD?

Evaluation Question 3c:Do caregivers believe they have coordinated access to support services that meet their needs?

Prepared by: Gail Andrew

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Executive Summary

Individuals affected by FASD and their caregivers have coordinated access to support and services to meet their needs.

Evaluation Questions:

3a. What proportion of individuals diagnosed in Alberta with FASD are receiving services to help manage their disability?

3b. How has service coordination been facilitated to meet the support needs of individuals diagnosed with FASD?

3c. Do caregivers believe they have coordinated access to support services that meet their needs?

Methodology:The methods used to examine these questions included: 1)Reviewing the concept of service integration and coordination and application to the Alberta FASD Service Network Program model. 2) Reviewing data from research studies focused on intervention recommendations after clinical diagnosis of FASD and current service utilization. 3) Reviewing data from the evaluation report on the Alberta FASD Service Networks submitted by KPMG in April 2012, including information from annual reports of the FASD Service Networks

Main Findings:

There is no provincial data linking diagnosis to service access. Every Service Network has successful collaborations in their communities, and the KPMG data indicates that there is service coordination and access (but it is not a direct measure). There is limited data on the caregiver perspective, but most felt that they were informed about where to get help for their child.

Recommendations:

Ongoing standardization of services provided by the Service Networks that is informed by evidenced based practices but allows flexibility for the needs of the affected individual and their caregiving situation, culture, and community.

Develop a template of common recommendations for assessment clinics to guide recommendations across all domains.

Develop a tracking system on types of services recommended after diagnosis

Research and evaluation of FASD interventions are needed.

Need mechanisms for rapid uptake of research into community practice, including engaging with community services providers in the research process.

Services need to have an integrated lifespan approach to care based on the International Classification of Function (ICF) principles.

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Key worker/case manager is an essential paid position.

Adults suspected of having FASD need a mentor to assist them in accessing a diagnosis, and in navigating the system of care to ensure recommendations for supports and interventions are accessed.

Youth with FASD will benefit from a mentor system, especially as they transfer out of child welfare services or if their caregiver can no longer manage due to burnout or aging.

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Table of Contents

Outcome 3: Evaluation Questions 3a, 3b, 3c................................................................................................................... 120Methods..................................................................................................................................................................................... 120Background on Service Integration and Coordination.........................................................................................120FASD Specific Research on Recommendations and Services after Diagnostic Assessment.................125Evaluation of the Alberta FASD Service Networks conducted by KPMG in 2011.....................................129

Question 3a:............................................................................................................................................................................. 129Question 3b:............................................................................................................................................................................. 129Question 3c:.............................................................................................................................................................................. 130

Recommendations................................................................................................................................................................132References................................................................................................................................................................................ 134

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Research Report: Outcome 3

Outcome 3:

Strategies set out by the FASD Cross Ministries Committee to meet this outcome are to:

Strategy 3.1: Facilitate enhancement and integration of coordinated services for adults, children and youth affected by FASD as well as their caregivers

Strategy 3.2: Improve access to services for individuals affected by FASD, including vulnerable populations who are not receiving the support they need, with a particular focus on youth in transition to adulthood.

Evaluation Questions

3a. What proportion of individuals diagnosed in Alberta with FASD are receiving services to help manage their disability?

3b. How has service coordination been facilitated to meet the support needs of individuals diagnosed with FASD?

3c. Do caregivers believe they have coordinated access to support services that meet their needs?

Methods

1. Review of the concept of service integration and coordination and application to the Alberta FASD Service Network Program model

2. Review data from research studies focused on intervention recommendations after clinical diagnosis of FASD and current service utilization.

3. Review data from the evaluation report on the Alberta FASD Service Network submitted by KPMG in April 2012, including information from annual reports of the FASD Service Networks.

Background on Service Integration and Coordination

To set the context, service integration and coordination for children, youth and when they transition to adulthood and the impact on their caregivers have been presented as a challenge across many complex needs populations.1-9 This includes Cerebral Palsy,9 Autism,10 Intellectual Disability, mental health disorders,11 and chronic medical conditions.8 The challenges are not unique to FASD and there are common themes in the models of care that are currently proposed and being introduced for other groups. These learnings can be applied to the system of care for FASD.5 However, the disability of FASD presents with many compounding factors. Often FASD is not recognized as the disability until into school age years or it is misdiagnosed as Oppositional Defiant Disorder or Attention Deficit Hyperactivity Disorder. FASD is often referred to as the “Invisible Disability,” and the difficulties may not be linked back to the prenatal alcohol exposure, leading to late diagnosis and access to the appropriate interventions. Late diagnosis increases the risk for secondary disabilities including mental health 112

Individuals affected by FASD and their caregivers have coordinated access to support services to meet their needs.

disorders or addictions.12 There needs to be the shift from willful misconduct and lack of motivation to reframing with a lens of organic brain damage on part of caregivers and service providers. Many individuals with FASD are not raised by a birth parent and may experience multiple placements and different caregivers with different levels of understanding of the lifelong disability of FASD. Supports for caregivers, therefore, need to be informed by where they are in their knowledge about FASD and commitment to the individual with FASD. Many with FASD have their impairments compounded by trauma in their early years. Trauma in itself contributes to brain dysfunction.10 If the birth mother is parenting her child, she may be still struggling with many of the biopsychosocial factors that contribute to her substance use or she may have the impairment of FASD herself. Services and supports need to be delivered with the needs of both birth mother and child in consideration. This is an opportunity to prevent subsequent pregnancies exposed to prenatal alcohol and improve the life situation for parent and child. The success of targeted prevention services for the women most at risk for having a child prenatally exposed to alcohol, referred to as Parent Child Assistance Programs (PCAP), are supported by research. The diagnosis of FASD is often referred to as the “Diagnosis for Two,” with prevention opportunities considered at multiple points of contact. This is unique to FASD and not part of the system of care for individuals with other developmental disabilities.

Dr. Gillian King from the University of Toronto, in collaboration with Dr. Peter Rosenbaum and other researchers from McMaster University, have been Canadian leaders in the field of service delivery for children and youth with disabilities and transition to adult services.Based on a review of the service delivery literature in 2006, a framework1 was developed that encompassed three types of approaches to service integration and service coordination. These approaches are evident in the Alberta FASD Service Network model. The three approaches are:

1. System/sector-based service integration,2. Agency-based service integration, and 3. Client/family-based service coordination.

All three need to be in place and on a continuum to optimize use of limited resources and to coordinate services to address the unique needs of the child/youth and family/caregiver. Service coordination is the process while coordinated care is the goal or outcome, with the client’s experiences of service being: easy to access, seamless with respect to the interfaces between different services, timely, and tailored to their needs. Coordination related functions and activities bring together different elements of complex organizations into efficient relationships where parts work effectively together to plan for services, provide administrative supports to ensure wise and equitable access, and to support clients in accessing the service based on client needs. There is also the realization that needs change over time due to personal or environmental factors and that the system of care needs to be responsive to those arising needs.15-18

System/sector service integration is at the macro level and requires the commitment and communication across systems and removal of policy barriers.5 This involves bringing together a number of agencies in a geographical area for a particular client group. It involves joint planning, centralized support, joint case management, shared information management, allocating resources, and specifying who provides what service to which client and when. Service coordinators act as case managers or brokers in allocating resources. This is represented by the 12 Alberta FASD Service Networks supported by the FASD Cross Ministries Committee (CMC). Many sectors such as Health, Education, Justice, Human Services, etc. are brought together to focus on the needs of individuals with FASD and their caregivers. Agency based integration involves developing local partnerships for clients and caregivers. Coordinators act directly with families to understand, choose, and access services that the agency has to

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offer. Each of the 12 FASD Service Networksare striving to this goal. For example, the Lakeland FASD Network has this well developed and it is built on sustaining relationships within their area. The last approach of care coordination is at the client/family based service level. This involves activities focused on assisting specific families to obtain needed services within and across agencies. The key worker/caseworker (also referred to as key workercase coordinator or navigator) works directly and face to face with the recipients of services: the individual with FASD and their caregiver. The role of key worker involves providing information, advice, mentoring, advocacy skills, problem solving when barriers to access are evident and emotional support. The key worker/caseworker needs to be a funded position and built into the system of care; it cannot be added on to the role of another team member unless they are given protected time. This recommendation is from the literature on multiple populations of chronic conditions. Cohen et al.5provide a conceptual model called the key worker triad involving clinical needs, system needs (what resources are needed), and a family lead (person most knowledgeable and responsible for meeting the child’s needs). The model emphasizes that with chronic conditions there is the need to assess, engage, act (connect to services), monitor and coordinate, evaluate, and engage in an ongoing cycle. Caregivers report that not knowing where to access services or what services they need is the major cause of stress and burnout or compassion fatigue.The FASD Service Networks are again striving to provide this service of key worker/case manager. There are different models to accomplish this. In the Lakeland model, case managers from their team are provided for all clients and they are available for ongoing support. In the Edmonton Network, this support is provided through partnership with Coaching Families from the Catholic Social Services agency using client mentors. The Glenrose FASD Clinic Social Worker provides short-term support until Coaching Families becomes involved for children and youth or a mentor is in place for adults diagnosed with FASD.

Another framework that needs to be incorporated into how services are delivered for FASD is the International Classification of Function (ICF) developed by the World Health Organization for adults in 2001 and for child and youth in 2007.15-18The ICF is a biopsychosocial model of interaction between the health condition of the individual, in this case FASD, and contextual factors including the environment and personal factors that can have an impact on activity and participation of that individual and also their caregivers (see Figure 1, below). Environmental factors can be facilitators or barriers. For an individual with FASD, not being understood as having brain damage in the school system or workplace is a barrier, while being given supervision in a modified working environment would be a positive support. Personal factors can include age, gender, race, social background, education, poverty, etc., and there are inequalities of access to health services based on these factors. Other personal factors can be the secondary disabilities that are not part of the primary health condition, such as depression, anxiety, or addictions that impact the ability of the individual to use the services provided. The ICF supports goal setting and respecting personal interests with questions such as: “What can I do?” and “What do I need to do it?” It is also a dynamic model, as personal and environmental factors may change but the health condition does not. This may result in deterioration in function and participation for that individual. This is very relevant to FASD, as it is a lifelong disability from organic brain damage caused by alcohol exposure in utero. Increasing dysfunction is noted across the age groups, as societal expectations to become an independent functioning individual are naturally put in place. Deficits in executive functions are core brain impairments in FASD and result in poor judgment, lack of flexible thinking, inability to learn from consequences, difficulties in generalizing information, etc. These deficits prevent the individual with FASD from moving to independent living and making effective personal decisions.22 Without adjusting the environmental factors and supports needed across the lifespan, the individual with FASD is set up to fail. In FASD there is also the risk of changes in or loss of caregivers and home environments to be considered. The impact of aging caregivers no longer being able to provide high levels of supports into the late adolescent and adult years of their dependent can lead to a crisis. The

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importance of supporting caregivers is well recognized across all disability groups. Using the ICF model of continuously monitoring environmental and personal factors, tipping points can be anticipated and strategies can be planned and put in place before a crisis.

Figure 1. The International Classification of Function (ICF) Framework

The “Life Needs Model” is another framework that needs to inform how services are developed and provided to individuals with FASD and their families. This is a socio-ecological model of services delivery for child and youth with disabilities, their families, and their communities within three spheres of life: personal, interpersonal, and external. It fits with the ICF with the goals of community participation but also puts an emphasis on quality of life. Quality of life goals are the same for individuals with disabilities and include having friends (safe social network), opportunities to contribute (to family, work, community), and to be recognized for their contributions (self worth). The model puts an emphasis on the fact that needs change as a child develops and seeks new life experiences and that their families also change. The Life Needs Model prepares for transitions and stresses the need for continuum of services as well as looking at outcomes. Personal factors include self-concept and abilities. Interpersonal factors include relationships. External factors include having education and employment, and living safely. In the Life Needs Model, community partnerships are the key to providing integrated services. Five types of services are needed to:

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1. Develop foundational skills to meet physical, communication, social and behavioral needs,2. Develop applied skills by integrating the foundational skills and develop mastery,3. Provide support and information to the individual, 4. Provide family education and supports, and 5. Provide the community with information and education to enable changing attitudes towards the

affected individual and changing the physical and social environment.

The importance of strengthening communities for Canadian children with disabilities has been highlighted in the work of Dr. Anne Snowdon in a study in 2011 funded by Human Resources and Skills Development Canada and resulting in the Sandbox Project.13 The parents of 166 children with multiple disabilities (Autism 32%, Global developmental Delay 16%, Intellectual Disability 10%, Multiple Physical and Cognitive Disability 23%, Down Syndrome 19%) were interviewed. The parents were well educated with 84% having post secondary education and living in three Canadian cities. They reported high stress (54%), low community support (67%), and that programs were available but not accessible (59%). They also expressed that they were not informed of resources, needing to rely on word of mouth, and often their children were not made to feel welcome. The children were of various age groups from <5 years (7%), 6 to 12 (27%) 13 to 18 (18%), and older than 18 (48%). This research has resulted in a project to help communities develop integration-focused programs based on knowledge of disability and setting up for success. There are also recommendations to develop coordinated web based navigation tools for families to access programs, services, and professional care. Families can also be a source of support to other families who are raising children with complex challenges. The Glenrose Rehabilitation Hospital has established a parent-to-parent support program to provide information and develop connections for parents with other parents. This project is in the process of evaluation. Personal communication from a caregiver of a child with FASD indicated that this program was very valuable to them.

Systematic literature review and key informant interviews with services providers and caregivers with children, youth, and adults with Cerebral Palsy in Alberta, led to the 2010 document “Enhancing Services for Children with Cerebral Palsy.” This was produced for the redesign of Pediatric Rehabilitation services at the Glenrose Rehabilitation Hospital. Authors, Drs. Lesley Wiart and Johanna Darrah, found many important themes and areas of need in this population.9 These can all be applied to FASD and become drivers for the Alberta FASD Service Network Program. The key points from this document included:

1. Standardization of services;2. Holistic integrated lifespan approach to care based on the ICF principles of participation and

quality of life with planned transitions;3. Key worker or case manager who assists families with comprehensive, integrated coordination of

their children’s’ rehabilitation needs including emotional and behavioral not just physical;4. Importance of early intervention and surveillance to prevent secondary disabilities;5. Building capacity by education of professionals and the community;6. Information sharing with a common and easily accessible resource for all families about programs,

peer-to-peer or parent-to-parent supports providing a formal way to connect families;7. Wraparound services based on needs across all life domains including residence, family supports,

medical care, psychological and emotional supports, legal assistance and safety, stressing the cross sectoral approach that is needed;

8. This needs to be a province wide initiative for Alberta.

Research into supports for individuals with Autism has raised the need for more evidenced based interventions to target not just the core deficits of Autism but on the service delivery system. In the review of services for adults with Autism published in 2012 by Shattuck et al., the lack of research

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evidence was noted.10 The heterogeneity of the population and comorbid conditions increase the complexity in Autism service delivery, similar to FASD. The Interagency Autism Coordinating Committee in the U.S. has suggested that a community based participatory research approach is needed to answer questions of effectiveness (what works), equity (disparate access), efficiency (cost and best use of finite resources), and access. Access is considered from five dimensions: availability (do services exist), affordability (reasonable cost), accessibility (geographically and physically available), acceptability (what is the attitude of client and caregiver to the available options), and accommodation (how are the currently available options organized). Care coordination and need for supporting families through the complex multi-sectoral systems was again recognized as a major need. There was also the importance of framing the research on capability and positive human development and not just disability focused. Dumas reported similar findings in supporting parents of youth with intellectual disabilities and psychopathology.11

FASD Specific Research on Recommendations and Services after Diagnostic Assessment

The literature on FASD has stressed the need to support both the brain impairment in FASD and to support the needs of caregivers, who are often not the biological parents. Assessment by a multidisciplinary FASD clinic moves beyond simply a diagnosis of FASD but provides the pattern of strengths and challenges of that individual and their particular life situation in order to inform the supports required.22 Reviews of FASD interventions in 2006 and 2009 revealed gaps as well as some promising practices needing further research.27-30 There is ongoing research on FASD specific strategies such as in deficits in mathematics and memory (Mathematics Interactive Learning Experience - MILE program), and social skills. This research is currently being replicated in Alberta, lead by Drs. Pei and Rasmussen in collaboration with the initial researchers (Drs Coles, Kable et al.). Strategies for teaching students with FASD, social skills training, sensory supports, medication management for targeted behaviors, and management of sleep disorders are just some areas of current research interest in Alberta along with other collaborators in Canada through the Canada FASD Research Network and NeuroDevNet. Dr. Heather Carmichael Olson has focused on the needs of caregivers in developing “Family Matters,” and this will be evaluated from an Alberta context.24 Dr. James Reynolds (who leads the NeuroDevNet FASD group) is looking at online parent support resources. Paley et al.26 have described the Family Empowerment Network (FEN) that uses a hotline and parent-to-parent matching approach. In FEN, the principles include treating parents as partners rather than clients, and focusing on strengths and health promotion rather than a treatment model. It is based on the assumption that needs may change depending on the stage of life of the child and the family unit as a whole. The model uses a multifaceted support system depending on the diverse needs and is based on building programs in a community context, promoting independence and empowerment of the family to make informed decisions. Most of these principles inform the work of the Alberta FASD Network. However, these studies are projects and research evaluation on short and long-term outcomes, and sustainability is required. Translation of research into practice will be facilitated by the strong communication and information strategies in the Network model. The Service Networks have also participated in aspects of research although not funded to do so. Partnerships between the communities(through the Service Networks) and researchers will be very important to inform researchers on important questions for future exploration.

Alberta data on current service use among children with FASD and prenatal alcohol exposure but no diagnosis (PAE) was collected as part of a larger study on neurobehavioral outcomes lead by Drs Rasmussen, Andrew, and colleagues. The sample consisted of 72 children (aged 6 to 17 years old) with FASD (n=46) or PAE (n=26) and their caregivers, who completed a survey on current service utilization.33

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All children had previously been assessed for or diagnosed with an FASD at an Alberta diagnostic clinic. The most frequently accessed services were: educational (93%), parent classes (65%), child medication (58%), child therapy (58%), early intervention (46%), and respite (35%). Family therapy, parent therapy, parent medication, and confinement were accessed by less than 25% of the sample.33 There were very few differences in the service use between those with FASD and those with PAE, except that those with FASD were somewhat more likely to receive school help (although rates were high in both groups), and those with FASD were somewhat more likely to have parents/caregivers that attended parenting classes. There were no differences in service use between those who lived in urban compared to rural settings.33

Capacity for diagnostic assessment of FASD is increasing in Alberta with the expansion of clinics to 24 available. The clinics use a consistent multidisciplinary approach to assessment. Training for clinics within Alberta and across Canada is provided by the Rajani FASD Clinic Team located in the Lakeland Network. The next step after diagnosis is to provide the individual with FASD and their caregiver with the needed resources and supports. There needs to be a consistent standard of care, raising the question “What are the recommendations after diagnosis and are they accessible?” To answer this question, the Diagnosis and Prevention Network (DPN) FASD Clinic in Seattle, Washington looked at a subset of 120 patients from the first 1,400 seen in that clinic from 2001 to 2007, ages 0.2 to 16.5 years with a mean age of 6.5 years. In a retrospective chart review, the type and frequency of intervention recommendations provided by the DPN Clinic was determined. Eleven intervention categories and subcategories were identified. These categories and the percentages of children and youth receiving one or more by category follow:34

Education (91%); Medical including sleep, vision and hearing assessment, referrals to subspecialists in neurology,

genetics, psychiatry, etc., ADHD management (82%); Anticipatory guidance, such as substance abuse prevention, reproductive health, safety (67%); Mental health including infant attachment therapy, trauma therapy, counseling for child and/or

family (66%); Developmental therapy such as occupational therapy or speech and language (64%) Family

support resources including training on advocacy, education on FASD, support groups, respite (53%);

Social services/child welfare such as stable placement (50%); Learning/behavioral accommodations with specific strategies (50%); Safety predominantly supervision in home, school and community (36%); Community social/leisure activities to facilitate physical and social development (33%); Other category included assisting the parent in accessing social and sobriety supports, re-

evaluation of the child for FASD when older (31%).

Most of the children/youth had recommendations in multiple categories, highlighting the complexity of needs and the need for involvement of multiple systems. From this study, Jirikowic and colleagues concluded that the FASD population requires a high level of supports.34 More educational needs were evident at younger ages, and mental health needs increased with age. However, the authors noted a lack of resources to deal with infant mental health around trauma in early life. The results underscore the need for an interdisciplinary approach to intervention services as well as the diagnostic assessment. The authors identified a lack of services for substance abuse prevention for the children and youth themselves as primary prevention, with only approximately half of the children receiving a recommendation specific to substance abuse prevention. . It was also noted that the DPN clinic in Seattle made recommendations that reflected the availability of local resources in a large metropolitan area; this raised the question of the generalizability to other geographic areas. It was recommended

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that future research is needed to determine the success to which families access and implement the recommended services and what are the perceived short and long term values of the interventions. The question of the changing needs of individuals with FASD need to be addressed, including transition to adult services; the DPN clinic in Seattle only sees the individual at one point in time unless a reassessment is recommended.

In 2011 and 2012, this work was replicated and extended with an Alberta sample of patients who were assessed through the FASD Clinic at the Glenrose Rehabilitation Hospital in Edmonton.36 The Glenrose multidisciplinary FASD team uses the same data-gathering process and diagnostic approach as the Seattle team, having been trained by that group on the DPN or 4 digit code.35 All 306 files that were reviewed had a confirmed history of prenatal exposure to alcohol. This data was recently presented at an international conference.36 The pattern of recommendations provided was similar to the Seattle group:36

Education 90.5% Medical 80.1% Anticipatory guidance 78.8% Accommodations 68% Family support 51.6% Mental health 44.8% Developmental therapy 42.8% Social services/child welfare 41.5% Community/ leisure 32.7% Safety 30.1% Reassessment 16.7% Other 8.5%

Younger children under age 5 years were given recommendations for family supports, reassessment, and developmental therapy, while the increasing need for mental health services was evident in both the age 6 to 12 and 13 to 17 years groups. Educational needs were predominant for all age groups, reflecting the complex learning and behavioral needs.36

To answer the question of whether families actually accessed the recommended interventions and supports, longitudinal follow-up was completed for 50 families who participated in parent interviews as part of another study.36 First, the question was asked: What percentage of the total group of 50 families received the specific interventions following assessment (without taking clinic recommendations into account)? Educational supports of either an individual program plan or modified program were the most frequently received support (about 88%). 36 Medication/psychiatry was accessed by 70%, developmental therapy by 68%, parent advocacy or education 58%, child counseling/mental health 58%, support for parent 46%, and behavioral intervention only 8%. 36 The low rate of accessing behavioral interventions may reflect the gap in services and the need to develop more services in this area specific to FASD. A relatively low rate of access to child mental health services is seen here; this topic is also touched upon in the Jiricowic et. al. paper,34 with the mention of a lack of available infant mental health services. With the inherent deficits in FASD in areas such as understanding and using language, learning challenges, and executive functioning difficulties, therapy based on a cognitive behavioral approach has limited benefit. Research is needed in this area, including evaluation on long-term outcomes. For example, Child and Adolescent Services (CASA) in Edmonton is an agency that provides behavioral and other mental health supports for infants, children, and adolescents. CASA is currently evaluating a program for children with FASD that is focused on a sensory model.

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Next, families’ access to interventions was examined in relation to the recommendations given at the time of assessment.36 For each category in the parent interview, only the families who had received a recommendation in that category were examined, to determine which recommendations were being followed. Percentages of families who followed through with a recommendation in each category were calculated. IPP/modified school program (accessed by 100% of families who were given this recommendation), developmental supports (95%), medication/psychiatry (81%), child counseling (67%), and support for the parent (67%) were most often accessed after recommendation from the clinic. Parent advocacy/education (50%) and behavioral intervention for the child (14%) were the areas with the least accessed recommendations.36 More research is needed to provide insight into the reasons behind low rates of access to certain recommended services. However, it is important to note that many families were already accessing these services prior to clinical assessment. This may mean that certain services are easier (or more difficult) to access regardless of clinical FASD assessment, thus potentially contributing to the higher (or lower) rates of access to specific interventions. In the preschool years, children in Alberta can receive early education programming through Program Unit Funding if identified with severe functional needs independent of a medical diagnosis. Many older school-aged children in Alberta receive special educational funding for severe behavioral and emotional functional needs or a cognitive impairment without a specific diagnosis. Prior to a FASD Clinic assessment, many children are in learning and behavioral school placements. A medical referral is required for referral to this clinic and in several cases the referral has come from a psychiatrist who is already managing the mental health and behavioral issues. The caregivers also reported that they accessed counseling for the child, parent education and advocacy training, and parent supports, without recommendation from the clinic.36 This may reflect the partnership model between services provided by the Edmonton FASD Network (EFAN) and the Glenrose FASD Diagnostic Clinical Services. For example, many families are already connected to services such as Coaching Families (part of Catholic Social Services). This is a specific program for caregivers of individuals with or suspected to have FASD in the Edmonton area. After the diagnosis of FASD, caregivers are connected with Coaching Families if not already connected. Coaching Families provides many services to the family including advocacy and help with system navigation. There is the need to do long term follow up of service access and to determine the outcomes from a quality of life perspective.

The Glenrose FASD Clinic has developed a template of recommendations that covers the categories: Medical (physical and mental health needs), education (developmental, school based, and employability), community participation (informed by safety, supervision, and personal goals and strengths), caregiver needs (education, respite), and transition planning (supports for funding, housing, safety, addictions, sexual health, justice/ legal needs). Behavioral strategies are given in all domains. The template is used to guide the clinic team as they individualize the supports for that particular child/youth/adult and caregiver profile on the day of clinic. The caregiver and the child/youth, if appropriate, participate in the recommendations so that they are realistic and relevant. If the child/youth is in the care of Children’s Services, the case worker is required to participate in this process. The Glenrose FASD Clinic has also recognized that there is an ongoing need to follow individuals with FASD overtime as their needs and life situation changes. Ten adults were recently assessed by the Glenrose Adult FASD team pilot project and results were presented at several FASD conferences.37 These adults had received a diagnosis of FASD 5 or more years prior by the Pediatric team. The increasing needs of this population were evident, with more impairment in all areas of functioning, as previously reported in the literature by Streissguth.38 The need for supports was across all systems and included areas such as mental health, addictions, employment, safe housing, income supports, legal issues, and general health care, especially reproductive health. The need to provide the adult with a mentor or support person prior to the clinic, throughout the assessment process, and in accessing the

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recommendations after the clinic was identified as critical. Many of the adults had aging caregivers or had become disconnected from any supports due to lifestyle patterns. Funding of a mentor who is trained in understanding FASD has become part of the project and will be evaluated. Without a mentor, most adults diagnosed with FASD will not be able to navigate the system, and a diagnosis of FASD just becomes a label instead of opening doors to a better quality of life.

Evaluation of the Alberta FASD Service Networks conducted by KPMG in 2011

Information was gathered by KPMG in 2011 to evaluate the Alberta FASD Network Program (see Appendix B). Some of this information has been applied to answers questions related to Outcome #3: Individuals with FASD and their caregivers have coordinated access to support services to meet their needs.

Question 3a:

What proportion of individuals diagnosed in Alberta with FASD are receiving services to help manage their disability?

At this point in time, the 24 Assessment and Diagnostic Clinics do not collect data linking diagnosis to service access. There is a need to develop a consistent template of recommendations for the clinics to use and tailor to their particular client. There is a need to collect data on services received by individuals with FASD not just at point of diagnosis but across their lifespan, acknowledging that needs and circumstances will change.

Question 3b:

How has service coordination been facilitated to meet the needs of individuals with FASD?

Collaborations, partnerships, building knowledge about FASD, and building on previous relationships in the communities are methods highlighted by the Service Networks.

The now 12 FASD Service Networks in Alberta are at different stages of evolution since establishing the FASD-SN in 2007, with some more established in developing community collaborations and others just beginning this foundational work. There has been an ongoing increase in capacity of programs and services throughout Alberta for FASD. The KPMG report indicated that every Service Network has created successful collaborations in their communities. These collaborations align with the model suggested by King and include the Service Network as a direct party in the collaboration or as collaboration “brokers” between funded service providers and community partners. The Service Networks reported that they were being recognized as resources in their communities. This included providing knowledge about FASD, building skills of service providers, and encouraging interactions among service providers. Collaborations have included Aboriginal and other cultural communities. Service delivery improvements through collaborations were identified, such as waitlist minimization, navigation, and follow-up planning. High rates of referral, especially to mental health related services, healthcare, income supports, and housing were identified in the data that can be found in Table 1.

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Table 1. KPMG Data on Service Referral

In the last month, to which of the following services did your organization refer individuals suspected of or affected by FASD?

Answer Options Response Percent

Response Count

Healthcare 47.6% 69Mental health 65.5% 95Prevention programs 31.0% 45Housing 46.2% 67Respite 23.4% 34Recreation 30.3% 44Detoxification/treatment 26.2% 38Addictions services 42.1% 61Employment 33.8% 49Education/training 37.2% 54Legal support/family support 37.2% 54Income supports 46.9% 68Transportation 26.2% 38Recreation 23.4% 34Food bank 39.3% 57None (not applicable) 14.5% 21Other (please specify) 12.4% 18answered question 145skipped question 0

From annual reports of the FASD-CMC and from each Service Network region, several examples providing evidence for collaborations and community integration are cited. There are several common themes. Wraparound meetings with other agencies around client supports are becoming standard practice; this includes a wide range of stakeholders such as probation officers, programs working with high risk families, medical personnel, and education. Recruitment of mentors who connect clients with required services in the community and informal supports is noted as a needed approach. Trust, respect, and relationship building were key points in developing community capacity. Having a physical space in the community was very important in raising community awareness and becoming a hub for clients and service providers. The Lakeland Center for FASD model provides this in each community that they serve. The Lakeland Center also provides a case manager for all clients with ongoing follow up as needed. Quantitative evaluation in not available, but the value and need for this are highlighted by the stories of the clients and the case workers. The need to have a lifespan approach again was highlighted. The Network Leadership Teams in each area are becoming more in line with the Alberta FASD-CMC guidelines. This will lead to consistency in approach but keeping the flexibility unique to that community and client.

Question 3c:

Do caregivers believe that they have coordinated access to support services that meet their needs?

There is little objective data in Alberta to answer the above question, except for the small sample of 50 caregivers included in the research study from the Glenrose FASD Clinic reported above.36 Diagnostic clinics currently do not collect data linking assessment to service utilization. In some cases, the service

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navigation is provided by a different partner, such as the Coaching Families model. There is the need for future data on the types of services recommended after diagnosis, and whether or not these services are available to and accessed by caregivers. Ultimately, the question of whether the supports make a difference in the short and long term needs to be asked, which are similar conclusions as the Seattle study.34 There is also the need to look at the cost of services to support an individual with FASD compared to the cost to society if the individual is without supports.39

The data from the Service Network interviews conducted by KPMG indicated that the Service Networks report that service coordination is in effect. There is limited data from the caregiver or client perspective. Parent/caregiver satisfaction surveys were done mainly around the assessment and evaluation phase of the FASD service provision. This was assumed to include some level of coordination but was not specific to coordination and access to supports and interventions driven by the assessment information, the after care. One question in the survey was: a) “After the assessment and diagnosis, people told me where to get help for my child/dependent, and b) After the assessment and diagnosis, people made sure I got help for my child / dependent.” Of those surveyed, 85% indicated that they were completely or somewhat in agreement with these statements, suggesting a positive indication of service coordination. Of 21 adults diagnosed with FASD, 81% agreed with these statements. Of the parents and caregivers, 93% report they are able to deal more effectively with the problems, suggesting more understanding. With regards to the quality of supports services received, 91% of caregivers and 90% of adult clients were satisfied. 91% of caregivers indicated that the support services their dependents received helped them deal more effectively with their problems and 66% reported that their dependents learned new skills. Clients who accessed supports from the PCAP (Parent Child Assistance Program) for mothers at high risk for having a child born with prenatal exposure to alcohol reported a high satisfaction rate of 99%. Also 87% either completely or somewhat agreed that the PCAP program mentors “helped me to use programs and services available in the community that I hadn’t used before”. This again implied service coordination and navigation. There is also a strong relationship building component to this program and a three year involvement between client and mentor. Short term outcomes of 254 women enrolled in a Service Network funded PCAP program include the self-report that over 60% had reduced drug and alcohol use. Among 124 pregnant at intake into the program, 61 reported completing substance abuse treatment. This type of outcome data needs to continue to be tracked and projected into long term harm reduction for having a child prenatally exposed to alcohol. Overall, the data gathered through KPMG, implies service coordination and access but it is not a direct measure. More information on the types of services needed and for how long needs to be provided.

Barriers and challenges to service coordination were also identified in the interviews with the Service Networks conducted by KPMG. Lack of capacity with respect to staffing and funding the staff appropriately was repeatedly mentioned. Lack of qualified staffing in housing projects, lack of respite care providers, rapid turnover in community service providers related to low pay and stress levels were cited. This resulted in the ongoing need to train new community partners on FASD. Coordinating services for clients can be difficult due to distance and transportation barriers, so that case managers need to spend time on the road and not directly with the client. Lack of phone access for clients and factors that are part of the brain damage of FASD itself was especially noted in working with adults with FASD. Gaps between Federal and Provincial funding sources in the case of Aboriginal communities were also noted. However, these challenges can be reframed into solution focused next steps. There are many examples of what is working and promising practices to build on.

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Recommendations

From this review of the current model in Alberta and informed by the literature, there are several areas to inform next steps.

1. Ongoing standardization of services provided by the Alberta FASD Service Networks that is informed by evidenced based practices but allows flexibility for the needs of the affected individual and their caregiving situation, culture, and community.

2. Development of a template of common recommendations for all assessment clinics to guide recommendations across all domains.

3. Develop a tracking system around types of services recommended after diagnosis, and ask whether these services available and accessed by caregivers and what are the outcomes.

4. Research and evaluation of interventions specific to FASD are needed in areas such as: best practices in addressing educational strategies, social skills, communication deficit, behavioral management, medication use, dealing with past trauma, employment supports, etc. Both short and long term outcomes need to be measured.

5. Mechanisms for rapid uptake of research into community practice need to be put in place, including engaging with community services providers in the research process.

6. Services need to have an integrated lifespan approach to care based on the ICF principles of participation and quality of life with planned transitions. This will need to include review of the functional needs of the individual and setting of new goals over time. This review needs to be built into the model and not just crisis driven.

7. Key worker or case manager is essential as a paid position. The roles and responsibilities include assisting families with comprehensive, integrated coordination of their dependent’s needs, and connecting to them to the right services at the right time and availability for review of needs.

8. Adults suspected of having FASD need a mentor to assist them in the process of accessing a diagnosis of FASD, both before and during the actual assessment, and in navigating the system of care to ensure recommendations for supports and interventions are accessed.

9. Youths with FASD will benefit from a mentor system, especially as they transfer out of child welfare services or their caregiver can no longer manage due to burnout or aging.

10.As diagnostic capacity increases, there will be a need to increase service provision to avoid waiting. Monitoring supply and demand will need to be put in place.

11.Importance of early intervention and surveillance to prevent secondary disabilities is well known. If a child is known to be prenatally exposed to alcohol but not as yet diagnosed with an FASD, their environment should be optimized for maximizing their developmental potential and preventing trauma (this should be part of Primary Health Care). There are also models of targeted prevention in Alberta in the process of evaluation, such as the CATCH (Collaborative Assessment

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and Treatment for Children in Care) in Edmonton and P-KIC (Pediatricians for Kids in Care) in Calgary.

12.Building capacity by education of professionals and the community is a current strength of the FASD Service Networks but will need to continue as new people enter the fields of service provision.

13.Providing education on FASD should be incorporated into the core academic curriculum for all professionals.

14.Information provision for caregivers will be an ongoing need, and needs to be framed in the lifespan concept of disability in FASD. Development of a common and easily accessible resource for all families about programs, using an online source that is kept up to date, is needed. Not all families will have this online access, so direct coaching will also be needed. Other information resources can be peer-to-peer or parent-to-parent supports, but there needs to be a formal way to connect families and to ensure correct information sharing.

15.Wraparound services based on needs across all life domains, including residence, family supports, medical care including addictions and sexual health, psychological and emotional supports, community participation, legal assistance, and safety are required. An ongoing collaborative cross sectoral approach is required at the community level.

16.Continued work at the Alberta FASD-CMC level will be needed to insure the province-wide sustainability for Albertans to access coordinated services around FASD. Partnerships, collaboration, and communication are needed by decision makers at systems and local levels.

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References

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Outcome 4:Service providers and families/caregivers have knowledge of and access to training and educational resources that are based on research and leading practices.

Evaluation Question 4a:Is there evidence that service providers have improved knowledge of and access to training and educational resources that are based on research and leading practices?

Evaluation Question 4b:Is there evidence that families and caregivers have improved knowledge of and access to training and educational resources that are based on research and leading practices?

Prepared by:Michelle Anderson-Draper

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Acknowledgements

Funding for this report was provided by the Alberta Centre for Child, Family and Community Research (The Centre).

The author would like to acknowledge the role and contribution of Tara Hanson, Director of Knowledge and Partnership Development, The Centre, in this evaluation, as well as the contributions of:

Denise Milne, Human Services; Shelley Birchard, Alberta Health and Wellness; Amanda Amyotte, Human Services; Karen Cotton, Alberta Solicitor General and Public Security; Chris Farquharson, Alberta Education Andrea Ingstrup, PCAP; and The authors of the evaluation reports cited in this report.

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Executive Summary

The purpose of the report was to measure progress towards the outcome of service providers and families/caregivers having improved knowledge of and access to training and educational resources based on research and leading practices. This outcome is based on the Alberta FASD-CMC 10 year Strategic Plan.

The goal of this study was to select a point in time, year 5, and conduct a review of documents to establish the current level of training and educational resources available. Many sources of documented evidence, each with its corresponding strengths and limitations, have informed this review. This report provides a summary of training and educational resources provided at three levels: the FASD Service Networks, Provincial Initiatives, and Ministry-specific Initiatives.

Findings

There is ample evidence of training opportunities and educational resources available for both service providers and for families/caregivers. However in the documents reviewed, participation was not always broken down by participant type, which limited the ability to report by group.

Some local Service Networks promoted provincial training and educational resources on their sites and offered training at the local level. A provincial evaluation concluded that Network Leadership Team members, Service Network Coordinators, funded service providers, and community partners/Network members have enhanced access to FASD related training provided by the FASD-CMC. However, the extent of the access has not been document.

Provincially, the annual FASD conferences and the FASD Learning Series were well attended and rated as highly useful training opportunities, and conference evaluation data indicated that they were successful learning opportunities. There is evidence that the participants attending the FASD Learning Series increased their knowledge through the content of the presentations. Several ministry-specific training and educational initiatives were undertaken by partnering ministries using their allocated portion of the FASD funding in alignment with the Strategic Plan and ministry priorities.

In terms of access, the Government of Alberta FASD Service Network website has the potential to be a vehicle to improve knowledge of training and educational resources. Although some evidence of promotion of training opportunities and educational resources were found listed on the Government of Alberta site (www.fasd-cmc.alberta.ca) and individual Service Network sites, this was not consistent across sites.

Using technology through videoconferencing and webcasting to disseminate the FASD Learning Series resulted in increased access to FASD information. This finding is supported by data that demonstrates stronger uptake in rural regions, and by reports from participants stating that the use of videoconferencing and webcasting technology enabled them to participate. It is important to continue to promote these opportunities in a variety of ways, with consideration given to ensuring that the Government of Alberta’s FASD website is a focal point for promotion. Special focus should continue to be placed on ensuring caregivers and families are aware of the training and educational resources. In terms of whether or not training and educational resources are based on research and leading practices, two findings are worth noting: 1) focus group results indicated that all local Service Networks 129

were aware of and up to date with current research and best practices, and 2) awareness does not necessarily translate into action. In this case, however, the second finding is based on action; Service Network, provincial, and ministry level initiatives all demonstrated examples of implementing best practices for educational programs.

Ultimately, it is not possible to comment on the existence of a group of service providers or families/caregivers who do not have knowledge of or access to training and educational resources, because the documents reviewed consisted mainly of reports of existing training and educational resources. A recommendation to conduct a survey of service providers and caregivers/families would address this limitation.

Recommendations

1. Include a direct measure for this outcome by conducting a survey of service providers and families/caregivers to measure knowledge of and barriers to training and educational resources in year 5, and repeat the survey in Years 7 and 10.

2. All Service Network, provincial, and ministry level initiatives should record and report attendance numbers, broken down by type of attendee, for all training events (service provider or family/caregiver) on a yearly basis using a standard template.

3. Some minor enhancements are recommended to the Government of Alberta FASD Service Network Cross Ministry Committee website to enhance its ability to serve as a ‘one stop shop’ for promotion of training and educational resources.

4.Continue to offer opportunities for collaborative training (service providers and families/caregivers) to ensure everyone involved receives the same information, which supports a consistent response.

5.Continue to support the FASD Learning Series via webcasting and videoconferencing and promote the archived series.

6.Enhance training opportunities and educational resources for teachers and school staff.

7.Promote the development, delivery, and dissemination of culturally relevant training, information, and resource materials.

8.Expand FASD educational resources for First Nations and Métis.

9.Consider the implications of increasing Service Network funding to include provision of training and educational resources at the local level.

10.Establish a provincial Education and Training Council to provide support (i.e., guidance, recommendations advice etc.) to the FASD-CMC on FASD education and training.

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Table of Contents

Outcome 4:............................................................................................................................................................................... 133Evaluation Questions 4a, 4b.............................................................................................................................................133Introduction............................................................................................................................................................................. 133Methods..................................................................................................................................................................................... 133Limitations and Considerations......................................................................................................................................135Section 1: FASD Service Network Program...............................................................................................................136

1A: Review of the Government of Alberta Fetal Alcohol Spectrum Disorder Local Service Networks site................................................................................................................................................................................................ 1361B: Findings............................................................................................................................................................................. 1451C: Service Network Access to FASD Related Training.........................................................................................1471D: Service Networks: Research and Best Practice Guidelines..........................................................................149

Section 2: Provincial Initiatives......................................................................................................................................1502A: FASD Learning Series................................................................................................................................................... 1502B: FASD Community Of Practice Showcase................................................................................................1552C: Conferences...................................................................................................................................................................... 1562D: FASD Presentation: Speaker Series....................................................................................................................... 1602E: The Alberta Council Parent Child Assistance Program.................................................................................1602F: Lethbridge College FASD Education Certificate...............................................................................................1632G: On-line Community of Practice................................................................................................................................ 163

Section 3: Ministry-specific Initiatives.........................................................................................................................1643A) Human Services............................................................................................................................................................. 1643B) Health and Wellness.................................................................................................................................................... 1673C) Education.......................................................................................................................................................................... 1713D) Gaming and Liquor Control..................................................................................................................................... 1723E) Seniors............................................................................................................................................................................... 1733F) Solicitor General and Public Security................................................................................................................... 174

Section 4: Discussion...........................................................................................................................................................177Recommendations................................................................................................................................................................179References................................................................................................................................................................................ 182

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Service providers and families/caregivers have knowledge of and access to training and educational resources that are based on research and leading practices.

Research Report: Outcome 4

Outcome 4:

Evaluation Questions

4a: Is there evidence that service providers have improved knowledge of and access to training and educational resources that are based on research and leading practices?

4b: Is there evidence that families and caregivers have improved knowledge of and access to training and educational resources that are based on research and leading practices?

IntroductionThe purpose of this review is to report on Outcome 4 and provide answers to Evaluation Questions 4a and 4b as listed above. Under the Strategic Plan, FASD initiatives have taken three forms:

1. FASD Service Network Program to build and enhance province-wide community capacity and community leadership to address FASD;

2. Provincial Initiatives , meaning province-wide FASD activities with a cross-ministry scope; and

3. Ministry-Specific Initiatives undertaken independently by partnering ministries using their allocated portion of the FASD funding in alignment with the Strategic Plan and ministry priorities.

This report has three sections, with one section allocated to each of the three forms of Strategic Plan initiatives.

Methods

The primary method employed to prepare this report was a comprehensive document review that took place between December 2011 and March 2012. A document review is a way of collecting data by reviewing existing documents. See the reference list for a complete listing of documents and websites reviewed.

Table 1. breaks down Outcome 4 into measurable pieces and identifies indicators used to answer the evaluation questions by means of a document review.

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Table 1. Data Matrix Table

Outcome (broken down) Indicators NotesEvidence of training for service providers

# of training opportunities provided

As per the FASD 10 Year Strategic Plan, training and education services consist of formal education, as well aspre-service and in-service training programs typically targeted at program/service providers (including health, medical, and human services professionals) and/or community groups.

Evidence of training for families/caregivers

# of training opportunities provided

Evidence of educational resources for service providers

# of educational resources listed, developed specifically for service providers

Educational resources are materials aimed to enhance understanding of FASD and provide support in the forms of information, strategies, website links, etc.

Evidence of educational resources for families/caregivers

# of educational resources listed, developed specifically for families/caregivers

Evidence that training is based on research and leading practices

Statements, evaluation findings, and other support found to indicate training and educational resources are based on at least one or more principles that guide the development and implementation of effective programs

Service Network self-reports (KPMG focus groups)Best Practices Related to Educational Programming* See below for a list of principles

Evidence that educational resources are based on research and leading practices

Service Providers have knowledge of training and educational resources

Evidence of promotion Examples include displays, community presentations, blogs, flyers, newsletters with articles about training and/or educational resources, links on Service Network websites, etc.

Families/caregivers have knowledge of training and educational resources

Evidence of promotion

Service providers have access to training and educational resources

# of service providers participating in training-List barriers, gaps to access found noted in documents

Families/caregivers have access to training and educational resources

# of families/caregivers participating in training- List barriers, gaps to access found noted in documents

*Best Practices Related to Educational Programming

(Principles taken from CASA Report1(p.15))

In 2009, CASA (Child, Adolescent and Family Mental Health) conducted an environmental scan of FASD education and training needs in Alberta. Part of the scan included a literature review identifying best practices specifically related to the design and delivery of FASD learning programs. The following

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principles were identified out of empirical-based literature as forming best practices to guide the development and implementation of effective educational program.

Principle 1: Base the program on assessments of learning needs, including assessment of the level of knowledge, skill, and attitude of the professional.

Principle 2: Incorporate principles of adult learning theory into the program design/delivery. Principle 3: Facilitate the integration of learning into the professional’s workplace and clinical

practice. Principle 4: Increase learner accessibility by providing e-learning opportunities. Principle 5: Evaluate programs and use the data to improve program effectiveness. Principle 6: Provide support for learning at the individual, organizational, and provincial levels. Principle 7: Provide educational programming that is culturally relevant and sensitive.

As an indicator that training and educational resources were based on research and leading practices, evidence of these principles were noted during the review of documents.

Data Sources: The Centre Director of Knowledge and Partnership Development provided sources of data to inform this report. These data sources were in the form of published reports, website links, and findings from evaluation activities. An internet search was also conducted to locate additional FASD local Service Network sites. A follow up review was conducted with key stakeholders to locate additional information and to verify accuracy of details contained in this report.

Time Frame: The documents reviewed are based on training and education resources ranging from 2008 to 2011, with the main focus being in the fiscal year of 2010-11.

Limitations and Considerations

As with any evaluation, there are limitations to this report which are summarized below:

Many sources of documented evidence, each with its own corresponding strengths and limitations, have informed this review. To determine the accuracy of the documents provided, other sources that contained similar information were reviewed whenever possible. Verification of any conflicting information took place with people who were involved in the development of the documents or could comment on their accuracy.

The documents reviewed for this report were not necessarily created with the intent of contributing to answering these evaluation questions and as such, secondary data complements but should not completely replace primary data collection.

Reports of training were not provided in a consistent format and some information was either incomplete or unavailable, specifically a breakdown of participant categories in any reliable way. A standard reporting template, with agreed-upon definitions could address this limitation in years 7 and 10. A concern remains, for this evaluation, that participant numbers may be somewhat inflated or underrepresented due to a lack of standard reporting.

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Section 1: FASD Service Network Program

This section is made up of the following three parts:

A) A review of the Government of Alberta FASD Local Service Networks site; findings, evidence of best practices, and recommendations;

B) Service Network Access to FASD-related training; evidence of best practices and recommendations;

C) Service Networks: Research and Best Practice Guidelines; Best Practices Related to Educational Programming.

1A: Review of the Government of Alberta Fetal Alcohol Spectrum Disorder Local Service Networks site

Reviews of the Government of Alberta Fetal Alcohol Spectrum Disorder Service Networks site found at www.fasd-cmc.alberta.ca (herein referred to as the GoA site) and specific Service Network websites were conducted in December 2011 and January 2012. This part of the review was to explore if the sites promoted training and educational resources.

It is important to note that Service Networks themselves are not funded to provide training and educational resources. As such, Service Networks do not report on training provided. However, some Service Networks may access other funds to meet that need.

Twelve FASD Service Networks are a key initiative of the FASD 10 Year Strategic Plan:

1. Calgary and Area Fetal Alcohol Network

2. Central Alberta FASD Network 3. Edmonton and Area Fetal

Alcohol Network4. Lakeland FASD Society 5. Mackenzie Regional FASD

Network6. Métis Settlements FASD

Network

7. Northeast Alberta FASD Network

8. Northwest Alberta FASD Network

9. Northwest Central Alberta FASD Network

10. Prairie Central FASD Network 11. Southeast Alberta FASD

Network12. South Alberta FASD Networ k

The following pages provide a summary of what was found on the GoA site under each network (http://www.fasd-cmc.alberta.ca/local-service-networks/) as well as information found on specific Service Network sites (this can include websites, resource listings, newsletters, etc.).

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1) Calgary and Area Fetal Alcohol Network (CFAN)

URL: http://www.fasd-cmc.alberta.ca/local-service-networks/calgary-and-area-fetal-alcohol-network/Information found on site:

Other website found? Notes:

Coordinator name, phone number, and two e-mail addresses

Yes: http://calgaryfasd.com/ Not linked to GoA site

Limited information available from GoA website. Searched to find if other site exists. Found Service Network site which has a lot of valuable information. Recommendation: add Calgary FASD site link to GoA site under local Service Networks.

The following information related to educational resources and training was taken from the Calgary Fetal Alcohol Network website.2

The Calgary Fetal Alcohol Network (CFAN) Initiatives: Circle of Friends

The Calgary Fetal Alcohol Network (CFAN), in partnership with the Calgary Health Region (CHR), developed a campaign for the Calgary area about friends helping friends avoid alcohol when pregnant. The main population of interest is over 244,000 youth ages 16 to 24-years-old.

The main messages are: “friends helping friends,” “no alcohol is best when pregnant,” and “friends caring for pregnant friends.” Materials can be obtained free of charge.

Calgary FASD Services List

Services and resources for families affected by Fetal Alcohol Spectrum Disorders: http://www.informalberta.ca/public/common/viewSublist.do?cartId=1007652. Website contains links to approximately 70 services and resources.

Speakers

Calgary Fetal Alcohol Network Annual Report (June 1, 2010 – May 31, 2011) refers to inviting guest speakers from community agencies to meetings (i.e. Inform Alberta, Casey Eaglespeaker (Hull), Momentum). No specific details in terms of participant numbers were found in the annual report.

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2) Central Alberta FASD Network

URL: http://www.fasd-cmc.alberta.ca/local-service-networks/central-alberta-fasd-network/

Information found on site:

Other website found? Notes:

Coordinator name, phone number, and e-mail addressEvents and Publications

None found

The following information was taken from the GoA site.

Education/Training Opportunities: The Central Alberta Network collaborated with The HUB on ROSS (a community centre for adults with developmental disabilities) to hold an ongoing FASD Film Review on the 3rd Saturday of each month. The purpose of the film reviews is to offer an opportunity for participants to learn more about FASD from people living with FASD, researchers, and people supporting individuals with FASD. The afternoon offers information on FASD, dialogue, and opportunities to ask questions and find out more about how to better support those living with FASD in Central Alberta.

Newsletter (January 2011): The newsletter contains a list of readings on FASD, fact sheets from the John Howard Society of Ontario, and promotion of the 4th International Conference on Fetal Alcohol Spectrum Disorder The Power of Knowledge: Integrating Research, Policy, and Promising Practice Around the World.3

Annual Report: Central Alberta FASD Service Network Reporting Period January 1, 2009 – March 31, 2010 Presentations and Awareness of FASD in the Community: 4 Approximately 300 people who are connected to someone with FASD, either in their work or in their families, attended training in the Central Alberta FASD Network region (cannot reliably separate service provider vs. families/caregivers given information provided). The training and learning opportunities offered or presented by the Central Alberta FASD Network, as well as the number of individuals who attended each, are listed:

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Presentation to the Community for supporting individuals with complex care needs (n=6) Presentation to Persons With Developmental Disabilities (n=8) Community members attended training by Donna Deboltb (n=10) Victoria International Conference on FASD (n=8) Regional Community Connections Group (n=15) John Howard Society, Calgary, Enhancing Professional supports (n= 3) Transitions for You – Foster Parent Training (n=20) Presentation to CFSA Board – Central (n =20) South Central FASD 101 (n=14) Enhancing Supports – Inmate focus (n=2) O’Chiese Reserve – Enhancing Success in the Classroom (n=52) FASD 101 – Human Service Sector – Red Deer (n=50) Enhancing Professional Supports for FASD – Red Deer – 2 Days (n=60) Mental Health Matters – Presentation for CMHA (n=20) 2 FSCA Staff Teams – FASD 101 (n=22) FASD Awareness Day Sept. 9, 2009 (n=60 attended training, plus approximately another 60 attended

the event).

In addition, there were 175 individuals who attended training in the south central part of the region that was supported by funds from Child and Family Service Authority (CFSA) Early Intervention.

The annual report also makes reference to displays, meetings, and brochures used to promote and share information. 4

3) Edmonton and Area Fetal Alcohol Network (EFAN):

URL: http://www.fasd-cmc.alberta.ca/local-service-networks/edmonton-and-area-fetal-alcohol-network/Information found on site:

Other website found? Notes:

Coordinator name, phone number, and e-mail addressEFAN BlogFASD Specific Services in Edmonton & Area

Yes: link provided on site http://edmontonfetalalcoholnetwork.wordpress.com/

Clicking on Edmonton and Area Fetal Alcohol Network link takes you to an advertisement site. Recommendation: verify website address.http://www.region6fasd.ca/home.php/

The following information was taken from the EFAN website:5

Resources:

b Donna Debolt is a social worker and FASD specialist with a private practice advocating for children and adults with risks associated with prenatal alcohol exposure. In her role, Donna challenges communities through case management, advocacy, and training to develop and implement prevention, intervention, and management strategies.

FASD Strategies not Solutions: this booklet is designed for caregivers and professionals who, in their everyday lives, encounter children and youth affected by FASD. This booklet provides strategies and suggestions for people who already have a base understanding of FASD.

Resource Directory: A 47 page resource directory was located at:6

http://edmontonfetalalcoholnetwork.files.wordpress.com/2009/10/resource-directory-complete1.pdf

Training:

Respectful Interviewing: Women and Substance Use in Pregnancy September 20, 2011 EFAN website promotes the FASD Learning Series

4) Lakeland FASD SocietyURL: http://www.fasd-cmc.alberta.ca/local-service-networks/lakeland-fasd-society/Information found on site:

Other website found? Notes:

Chair’s name, phone number and e-mail address

Yes, http://www.lcfasd.com/about.htmlNot linked to GoA site

Limited information available from GoA website. Searched to find site. Service Network site has a lot of valuable information.Recommendation: Add local Service Network site link to GoA site.

The following information was taken from the Lakeland FASD Society website.7

Training:

Case Management of FASD, Donna Debolt Workshop, March 30, 2011

Website promoted FASD November 2011 Conference.

Resource Section: Books, videos, articles of interest, contact information for support groups.

Blog: http://lcfasd.com/blog/

Understanding Fetal Alcohol Spectrum Disorder, January 11, 2012

Promoting the FASD Learning Series.

5)Mackenzie Regional FASD Network

URL: http://www.fasd-cmc.alberta.ca/local-service-networks/mackenzie-regional-fasd-network/Information found on site:

Other website found? Notes:

Coordinator name, phone number, and two e-mail addresses

Yes: http://www.nwr-fasd.ab.ca/Not linked to GoA site

Limited information available from GoA website. Searched to find if other site exists. Another site does exist, however limited current or recent training opportunities listed. Recommendation: remove dated training opportunities (i.e. more than 2 years old); add local Service Network site link to GoA website.

The following information was taken from the Mackenzie Regional FASD Network website:8 www.nwr-fasd.ab.ca

Community Resources:list of links, programs, lending library.

The FASD Coaching Program: consists of the Family and Youth Coaching Program. The Coaching Families Program works with families within the Mackenzie Region who are living with someone suspected of or having a diagnosis on the FASD spectrum. Business Plan:9

EFAN Fetal Alcohol Spectrum Disorder Awareness Day FASD Conference , May 31 - June 2, 2007

Understanding the FASD Journey: Working Towards Success Community Service Provider FASD Intervention and Awareness Workshop

February 18, 2005 Fetal Alcohol Spectrum Disorders: Creating Success in the Classroom, Home and Community (A

workshop for professionals and caregivers) March 8, 9, 10, 2004

FASD Pebbles Training Workshop, August 31, 2011 Promoting FASD Learning Series 2009-2010

6) Métis Settlements FASD Network

URL: http://www.fasd-cmc.alberta.ca/local-service-networks/Métis-settlements-fasd-network/Information found on site:

Other website found? Notes:

Chair’s name, two phone numbers, and an e-mail address

None found Are there other sources of evidence of local training?

7) Northeast Alberta FASD Network (NEAFAN)

URL: http://www.fasd-cmc.alberta.ca/local-service-networks/northeast-alberta-fasd-network/Information found on site:

Other website found? Notes:

Coordinator name, phone number and e-mail address

None found Are there other sources of evidence of local training?

8) Northwest Alberta FASD Network

URL: http://www.fasd-cmc.alberta.ca/local-service-networks/northwest-alberta-fasd-network/Information found on site:

Other website found? Notes:

Coordinator name and e-mail address (no phone number)

Yes: http://www.nwfasdnetwork.caNot linked to GoA site

Limited information available from GoA website. Searched to find if other site exists. Recommendation: Add Service Network site link to GoA site.

The following information was taken from the Northwest Alberta FASD Network website.10

Training: Surviving the Teen Years, a workshop for parents and caregivers with teens with FASD, December

8th, 2011 Prevention of FASD Workshop, Liz Lawryk, Peace River, February 16th, 2012 Promoting FASD Learning Series

Resources: lending library and links

9) Northwest Central Alberta FASD Network

URL: http://www.fasd-cmc.alberta.ca/local-service-networks/northwest-central-alberta-fasd-network/Information found on site:

Other website found? Notes:

Chair’s name and e-mail addressExecutive Director’s name, two phone numbers, and an e-mail addressVision and Mission statement

None found Are there other sources of evidence of local training?

10) Prairie Central FASD Network

URL: http://www.fasd-cmc.alberta.ca/local-service-networks/prairie-central-fasd-network/Information found on site:

Other website found? Notes:

Coordinator’s name, phone number and e-mail addressVision and Mission statement Services offered

None found Are there other sources of evidence of local training?

11) Southeast Alberta FASD Network

URL: http://www.fasd-cmc.alberta.ca/local-service-networks/southeast-alberta-fasd-network/Information found on site:

Other website found? Notes:

Co-chairs names, phone numbers and e-mail addressesCoordinator’s name, phone number, and e-mail addressNewsletter

Yes: http://www.seafan.ca/Not linked to GoA site

Limited information available from GoA website. Searched to find if other site exists. Another site does exist with limited information about training.Recommendation: Add local Service Network site link to GoA site; add information on training and events to local site.

The following information was taken from the Southeast Alberta FASD Network11

Promotion of the Government of Alberta FASD Learning Series

No training or events listed under Training & Events tab of website

Resources: FASD Report, Services in The Community (SL&H BrochureChildren’s Health and Developmental Services Brochure), and programs and services listed.

12) South Alberta FASD Network

URL: http://www.fasd-cmc.alberta.ca/local-service-networks/south-alberta-fasd-network/Information found on site: Other website found? Notes:

Co-chairs names and e-mail addressesCoordinator’s name, phone number and e-mail addressVision, MissionGoals, BeliefsPrinciples,MembershipServicesResourcesUpcoming Events

None found

The following information was taken from the GoA website.12

Services: Assessment and diagnosis; coaching and mentoring; FASD Youth Justice Project; FASD Adult Justice Project; First Steps. Contact information and details listed for each.

Training: FASD Training, May 2 & 3, 2011, Lethbridge College

Resources: Regional FASD Resource Guide for use by agencies, families, and caregivers who support individuals living with FASD

1B: FindingsFindings from the Review of the Government of Alberta (GoA) FASD Service Networks site

The GoA FASD Service Networks site has the potential to be a vehicle to improve knowledge of training and educational resources.

Although some evidence of promotion of training opportunities and educational resources were found listed on GoA site and individual Service Network sites, it was not consistent.

Some local Service Network sites promoted provincial training opportunities while others did not.

Several local Service Networks have their own website, however a link was rarely found on the GoA site.

Having an FASD site for and by families affected by FASD promotes trainings, resources and supports.13

A new on-line Community of Practice was started in 2012.14

Best Practices Related to Educational Programming, as Demonstrated by Service Networks: Based on the review of the GoA and local Service Network sites, evidence of Principles 3 and 4 were noted.

Evidence of Principle 3 “Facilitate the integration of learning into the professional’s workplace and clinical practice” was found promoted on some Service Network websites (e.g. Central and Lakeland).

Evidence of Principle 4 “Increase learner accessibility by providing e-learning opportunities” was found in terms of some local Service Networks promoting the FASD Learning Series on their website.

Evidence of Principle 6 “Provide support for learning at the individual, organizational, and provincial levels” was found, with several local Service Networks presenting a variety of training at both the local and provincial level.

Recommendations for GoA and Service Network Coordinators:

The GoA FASD Local Service Networks website should be a ‘one stop shop’ for service providers and families/caregivers for knowledge of and access to training and educational resources.

Minimize variations between what is posted by each Service Network.

Provincial training opportunities should be promoted on the GoA website.

Links to individual Service Network websites should be included on the GoA website.

Include link to the website for families (http://fasd.typepad.com) on the GoA website.

Include link to the Community of Practice site (www.fasdcommunity.ca) on the GoA website.

Verify the accuracy of the Edmonton and Area Fetal Alcohol Network website.

Service Networks should ensure content included on websites is current.

1C: Service Network Access to FASD Related TrainingNetwork Coordinators were asked to report on how many Network Leadership Team members, service providers, and community members/partners were in attendance at all the province-wide FASD-CMC education and training events.

KPMG, in the role of Provincial Evaluation Coordinator, prepared an evaluation report15 (Provincial Formative Evaluation Report, Working Draft; September 29, 2011) and provided a summary of what was reported by the Network Coordinators.

The information in Table 2 below provides a list of events and the number of attendees from each category.

Table 2. FASD-CMC Education and Training Events

Date EventNetwork Leadership Team

Network Coordinator

Funded Service Provider

Community Partner/Member

Sep 18/07 Video Conferencing with Service Networks: Introduce funding proposal process

3 4 2 2

Oct 2/07 Network Workshop: Proposal Building 3 3 2 3

Dec 3/07 Network Workshop: Business Planning 3 4 2 2

Feb 12/08 Network Meeting with presentation on behalf of CMC

3 3 2 2

Mar 12 & 13, 08

Network Workshop: Strategic Planning (in collaboration with PHAC)

6 3 3 2

Apr 23/08 Network Workshop: Leading Practices in Assessment and Diagnosis

4 4 8 3

Sep 23/08 Network Meeting with presentation on behalf of CMC

5 4 3 2

Nov 18&19/08

LP Workshop: Assessment/Diagnosis 7 4 8 3

Nov 20/08 Network Workshop: Business Planning Process 4 5 3 3

Jan 12&13/09

LP Workshop: Prevention (in collaboration with PHAC) 3 2 6 6

Mar 26&27/09

LP Workshop: Supports (Bonnie Stonehouse, SCS) 11 5 25 25

Oct 6/09 Network Workshop: Revised Funding Guidelines 5 7 3 2

May 26-29/09

LP Workshop: Prevention 3 1 4 5

May 26/09 Network Workshop: Funding 3 5 2 2Nov 22/09 Network Workshop:

Assessment/Diagnosis 2 4 7 2

Total 65 58 80 64

Noteworthy: According to KPMG, the findings from the evaluation show that Service Networks have enhanced access to FASD related training provided by the FASD-CMC for Network Leadership Team members, Network Coordinators, funded service providers, and community partners/Service Network members, though it is unclear to what extent.15(p.44) However, this finding should be interpreted with caution as data regarding attendance at education and learning events was only available from seven out of the twelve local Service Networks. Seven Service Networks were able to report on attendance at these events,

including the type of attendees from their local Service Network. Two local Service Networks did not respond to the request and two others indicated they did not track that information. One local Service Network did not send any representatives to the training sessions.

Recommendation for Network Coordinators:

All FASD Service Networks should keep track of attendance at learning events as well as a breakdown of type of attendees.

1D: Service Networks: Research and Best Practice Guidelines

In their role as provincial evaluator, KPMG conducted focus groups with Network Leadership Team representatives in 2011. The responses to the following four questions are most applicable to this report.

1. How does your Service Network stay aware and up to date with current research and best practice guidelines for FASD programs and services?

All Service Network representatives responded positively that they were aware of and up to date with current research and best practices, which include reading current research literature, attending conferences, participating in research projects, and conducting their own research.

2. Have evaluation results, evolving best practice guidelines, and current research affected the planning you do in your Service Network?

All Service Network representatives responded positively to the question that evaluation results, best practice guidelines, and current research have affected their planning. Examples are listed by Service Network in Appendix A.

3. Does your Network believe that their funded service providers follow best practice guidelines?

The majority of Service Network representatives believed that their funded service providers follow best practice guidelines.

4. Does your Network encourage the use of best practice guidelines?

The majority of Service Network representatives responded that their Service Networks encourage the use of best practice guidelines.

See Appendix B for the full list of responses by Service Network.

Best Practices Related to Educational Programming:

The focus group results and examples provided by Service Networks serve as evidence of Best Practices related to educational programming. Based on the review of examples provided, evidence of Principles 1 and 5 were noted.

Examples of evidence of Principle 1 (“Base the program on assessments of learning needs, including assessment of the level of knowledge, skill and attitude of professional”): o Calgary Network is using the results from the needs assessment to invest in more supports for

adults and in rural communities. o Edmonton Network conducts a regular a SWOT analysis, needs analysis and environmental scan to

determine funding priorities.

Examples of evidence of Principle 5 (“Evaluate programs and use the data to improve program effectiveness”):o NEAFAN evaluated their clinic and made adjustments where necessary.o South Network added FASD youth transition supports based on the results from the evaluation.

Section 2: Provincial Initiatives

This section is made up of the following parts:

A. FASD Learning Series B. FASD Community of Practice ShowcaseC. ConferencesD. FASD Presentation: Speaker SeriesE. The Alberta Parent Child Assistance Program (PCAP) and PCAP CouncilF. Lethbridge CollegeG. On-line Community of Practice

The Alberta FASD-CMC emphasizes that training and education for FASD are very important to help with identifying people affected by FASD and providing them with appropriate supports throughout their lives. The FASD-CMC is working to ensure service providers and families/caregivers have knowledge of and access to training and educational resources that are based on research and best practices.16

The FASD-CMC is developing formal education, pre-service, and in-service training programs which are targeted at program/service providers (including health, medical, justice, education, researchers, and human services professionals) and/or community groups. Particular consideration is being made to ensure that training and education services are culturally appropriate for Aboriginal and other populations.

2A: FASD Learning Series

The FASD Learning Series, administered through Alberta Human Services (formally known as Children and Youth Services), was introduced in 2007 to increase community and individual capacities to support individuals with FASD and their caregivers across the lifespan. The initiative specifically addresses the need for educational programs that target a wide variety of urban and rural audiences. The following figure17 illustrates the percentage of participants in attendance at the FASD Learning Series in each year, over the three years.

Figure 6: Percentage of FASD Learning Series Accessed by Type of Participant.

Although the number of sessions accessed from the 2008/09 program year to the 2009/10 program year decreased drastically (from 682 to 178 participants), there was an increase in the 2010/11 program year to 610 participants. Two-thirds of the service providers in 2010-11 who accessed the FASD Learning Series were employed in social services, health care, or education, and broadcasts occurred in the provinces of Alberta, British Columbia, Saskatchewan, and the Northwest Territories. Additionally, 90% of individuals accessing the sessions did so remotely via videoconference.

The 2010/11 FASD Learning Series

CASA was contracted to develop the content for the 2010/11 program year and to conduct formative and summative evaluations. The 2010/11 FASD Learning Series presented 11 educational sessions between September 2010 and March 2011. Session content was targeted to the following audiences: parents/caregivers (9 sessions), youth/young adults (5 sessions), service providers (6 sessions), health care professionals (4 sessions), and educators (1 session). Some of the sessions were designed to target more than one audience.

Presentations were archived on-line for public access.

All sessions were recorded and the videos were uploaded to the CMC-FASD website for continued unrestricted use. They can be viewed at the following link: http://www.fasd-cmc.alberta.ca/home/572.cfm.

Noteworthy: Between September 2010 and March 2011, CASA18 reported a total of 24,355 hits occurring for videos archived on the FASD-CMC website, with the most frequently accessed videos being in the individuals or family members/caregivers category.

An increase in the viewing in more rural areas supports the assertion that offering the information via the internet will increase access to information on FASD.

Session Evaluations:

Five hundred and seventy-two of individuals accessing the sessions completed end of session evaluations.

Survey Respondents by Target Group

According to the results from the end of session evaluations, the largest target audience attending the sessions was service providers. Approximately half of the survey respondents were from Alberta; the remainder were from other provinces/territories including Saskatchewan, the Northwest Territories, and British Columbia. Thirty-three percent of respondents said that they or their organization were members of an FASD Service Network.

Table 3 below shows that the majority of session participants were service providers. In comparison to the other groups, the percentage of parents/caregivers and individuals affected by FASD was much smaller.

Table 3. Individuals Accessing FASD Learning Series by Participant Type

2008/09(n=682)

2009/10(n=178)

2010/11(n=610)

Service Provider 86% 93% 84%Parent/caregiver 13% 7% 15%Individual affected by FASD 2% 0% 1%

Participant Feedback

According to the survey results, the majority (i.e. 88%-93%) of respondents “strongly agreed” or “agreed” the learning objectives were clear, the learning objectives were met, the content was relevant for them, and they would be able to apply what they had learned and it was a valuable learning experience. Average overall ratings of satisfaction with the content of the sessions was 81%. A majority of respondents (88%) also “strongly agreed” or “agreed” that their awareness of the topic increased, and that they will share what they learned with others (89%).

Noteworthy: In each session, the average differences in respondents’ assessments of their pre-post change in knowledge showed that they perceived their knowledge to have increased after attending a session. The average increase in knowledge across the 11 sessions was +11%, which was statistically significant at a p-value of 0.001, and ranged from +3% to +31%.Appendix C lists the dates and session names of the 2010/11 FASD Learning Series18along with the audiences each session targeted. This table illustrates the training available for both service providers and families/caregivers and also provides the percent change in knowledge by session (self-reported).

Data for 2011/12 and Additional Findings

In 2011/12, the technology used to deliver the educational sessions changed from videoconferencing to webcasting. Webcasting allows participants to view the sessions from their own computers without having to travel to a central location. The 2011/12 FASD Learning Series presented 7 educational sessions between September 2011 and March 2012, as seen in Table 4. Tables 4 through 9 provide an overview of the findings from the participant evaluations.

Table 4. 2011/12 FASD Learning Series Educational Sessions

Table 5. Attendance by Year

2008/09 2009/10 2010/11 2011/12Total Attendance 1,801 612 1,239 1,531Number of sessions 21 18 11 7Average attendance per session 94 34 113 219

Table 6. Content of Sessions

YearStrongly Disagree Disagree Agree

Strongly Agree

Don’t Know

Average Agreement*

The content was relevant to me.

2008/09(n=844)

1% 2% 58% 38% 1% 84%

2009/10(n=173)

2% 3% 40% 54% 1% 87%

2010/11(n=570)

2% 4% 46% 46% 1% 85%

2011/12(n=427)

1% 5% 39% 54% 0% 86%

**To determine average agreement, ratings were assigned a numerical value (i.e. strongly agree=4; agree=3; disagree=2; strongly disagree=1) and the mean numerical rating (out of 4) was then converted to a percentage.Table 7. Application of Sessions

YearStrongly Disagree Disagree Agree

Strongly Agree

Don’t Know

Average Agreement*

I will be able to apply what I have learned at this session.

2008/09(n=840)

- 4% 59% 34% 3% 83%

2009/10(n=178)

1% 4% 44% 49% 2% 86%

2010/11(n=572)

2% 6% 52% 38% 2% 82%

2011/12(n=427)

1% 5% 39% 52% 2% 86%

Date Name of Session AttendanceSept 28 Talking with Women about Alcohol and Pregnancy 327Oct 26 Safety Planning for the Service Provider 270Nov 30 FASD: 101 Second Edition 316Dec 14 Transition Planning 173Jan 28 Cognitive Interventions to Improve Language Skills 230Feb 22 Cognitive Interventions to Improve Memory 134March 28 Cognitive Interventions to Improve Math Skills 81

Total: 1,531

Table 8. Increase of Awareness

YearStrongly Disagree Disagree Agree

Strongly Agree

Don’t Know

Average Agreement*

My awareness of this topic increased as a result of this session.

2009/10(n=180)

2% 6% 41% 50% 1% 85%

2010/11(n=569)

3% 8% 44% 44% 1% 82%

2011/12(n=427)

2% 7% 37% 52% 1% 85%

Note: This question was only added to the survey in 2009/10 so there are no ratings for 2008/09.Delivery Method

Table 9 shows ratings for the method of session delivery. Note that all of the ratings for 2008/09, 2009/10 and 2010/11 are for videoconferencing and those for 2011/12 are for webcasting.

Table 9. Use of Videoconferencing/Webcasting Helped Attendance

YearStrongly Disagree Disagree Agree

Strongly Agree

Don’t Know/Does Not Apply

Average Agreement *

Use of videoconferencing/webcasting helped me attend this session.

2008/09(n=848) - 2% 32% 64% 2% 91%

2009/10(n=159) 1% 7% 23% 62% 7% 89%

2010/11(n=513) 1% 2% 26% 72% - 92%

2011/12(n=4275) 1% 9% 29% 59% 1% 96%

The data from this table is important in showing that videoconferencing/webcasting plays an important part in enhancing access to training opportunities.

Summary of Findings from 2010/11 Evaluation Report:18

Using technology to disseminate the FASD Learning Series resulted in increasing access to FASD information. This is supported by data which demonstrates stronger uptake in rural regions, and by reports from participants stating that the technology enabled them to participate.

Although some participants experienced frustration when the technology did not work the way it was intended, the benefits of increased access to FASD education and training outweigh the limitations experienced with the videoconference and webcasting technology.

There is evidence that participants attending the FASD Learning Series increased their knowledge in the content of the presentations. The average post-session knowledge gain of 11% is statistically significant.

Participant ratings suggest the content was relevant to them and that they would be able to apply what they had learned. There were similar findings from the web surveys that rated the archived videos.

Besides increasing access, the FASD Learning Series has been efficient in distributing the expertise of the presenters. The more often the videos are viewed, the more cost-effective the series becomes. The evidence suggests that access to the archived videos should continue, and utilization could be further enhanced through advertising and operational improvements to the website.

The FASD Learning Series presented information to service providers, parents, caregivers, and individuals affected by FASD. The knowledge gained by these diverse groups is a valuable resource to enhance community and individual capacities to support individuals with FASD and their caregivers across the lifespan.

Best Practices Related to Educational Programming for the FASD Learning Series:

Evidence of Principle 4 “Increase learner accessibility by providing e-learning opportunities.”

Evidence of Principle 5 “Evaluate programs and use the data to improve program effectiveness.”

Evidence of Principle 6 “Provide support for learning at the individual, organizational, and provincial levels.”

2B: FASD Community Of Practice Showcase 19

On November 30, 2010, an FASD Community of Practice Showcase hosted by The Centre was held in Edmonton, Alberta to inform the community about some of the promising work being carried out around the province.

This one day event focused on the results of the FASD Communities of Practice project and:

Showcased this Alberta-made project that focuses on case management,

Highlighted the results of the project, and

Discussed how to keep communities of practice sustainable.

The intent of the project was to improve outcomes and placement stability for children and youth in care who are diagnosed with or suspected of having FASD.

Alberta Child and Family Service Authorities (CFSAs) Regions 1, 7, 9, and 10 implemented the program Promising Practices in FASD, with over 100 children, their caseworkers, foster families, kinship caregivers, group home providers, and supporting community agencies.

This event was designed to be of benefit to caseworkers, support workers, kinship care managers, group homes, residential care, foster parents, policy makers, and researchers. There were approximately 2300

participants at this day-long event, including approximately 300 people onsite and 2000 people via live webinars.19

Refer to section 3, under Human Services for more information on the Community of Practice.

Best Practices Related to Educational Programming for Community of Practice:

Evidence of Principle 2,”Incorporate principles of adult learning theory into the program design/delivery.” Part of the day consisted of table group discussions and was not solely lecture based.

Evidence of Principle 4,”Increase learner accessibility by providing e-learning opportunities.”

The following are comments from symposium participants at table discussions related to training. Based on the comments, there appears to be support for increased training, with some mandatory components. Note that training for school staff was mentioned several times.

Mandatory Training on FASD

The typical training practice is a few hours when it should be far more extensive. Continued training! Ongoing opportunities for consultation (professional) & education about FASD More education; The Criminal systems need to be on board; Cross Ministry Training Educate and support adults with FASD to break the cycle of more FASD babies. Ongoing mandatory FASD training for FASD training should be mandatory for all Human Services

workers and Foster Families Training that involves all systems - caseworkers, foster parents, teachers, childcare staff etc. P.D. Day for teachers that also includes social workers & foster parents to provide training about

children with FASD (all together in one room) Training for all public. Not just for the CFSA staff. This training needs to be at no cost Focus on strengths, not just behaviours. Matching the needs of the child to the skills and dynamics of the foster home….very important

Training: for Collaborative Partners and Human Service Workers Schools need to be brought on board with FASD best practices. Teachers, counselors, student

assistants, teacher assistants - any school staff really need this information. Education for educators - lunch & learns - with practical approaches for implementation Train school staff right from the top. Workers & multidisciplinary go into schools to build on success Multidisciplinary teams, not only caseworkers at one shared training including school personnel. FASD education to our Teachers (schools). To have an FASD Individual come into educate students to have an impact. Expand this program to include high school family/sex ed. Prevention! Training for education system/teachers - so they're not setting kids up for failure by using behavioural

approaches that don't work with FASD P.D. Day for teachers that also includes social workers & foster parents to provide training about

children with FASD (all together in one room)

2C: ConferencesThis part of the report contains a description of the Government of Alberta FASD conferences held in 2008, 2009, 2010, and 2011.

2008 Conference: approximately 600 participants registered; 152 evaluation forms completed for a 25% response rate.

2009 Conference: 550 participants registered; 111 evaluation forms completed, for a 20% response rate.

2010 Conference: 569 participants registered; 289 evaluation forms completed for a 51% response rate.

2011 Conference: 575 participants registered; 210 evaluation forms completed for a 37% response rate.

Participants were not asked to specify a role or category (e.g. caregiver, service provider etc.) at registration, therefore it is not possible to provide data on the breakdown of registrants by role type. Limitation: Without a breakdown of participants by type, it is not possible to comment on to what extent families/caregivers had knowledge of and access to conference activities based on documentation provided

Recommendation:

Ask conference participants to specify a role or category, as part of registration, so future evaluations will be able to provide a breakdown by type of attendee.

Highlights from the Conference Evaluation Reports

Building on our Strengths: Stone by Stone, International Conference on FASD May 21-24, 2008

The highest percentage of respondents heard about the conference through a distribution list (e-mail invitation) (38%) followed by hearing about it from a co-worker (32%).

The majority of respondents (84%) rated the registration, facility, community showcase, and overall conference experience as excellent.

Open-ended responses included statements about how the conference gave excellent information/strategies to apply to participants’ work. Respondents also noted that the MC and keynote speakers were insightful, well-informed, engaging, and that the talks were relevant.

Examples of comments having to do with increased knowledge and access to educational resources are presented below:

“Excellently organized/spectacularly planned from beginning to end – incredibly well done in terms of knowledge acquired on all levels.”

“Great energy, I hope all future conferences adopt this format for the resource fair portion.”

“All sessions that I attended I felt that they were pertinent and helpful to me in my work, I will be sharing the information gathered with my colleagues.”

“Knowledge, experience and expertise at this conference was amazing and very inspirational.”

“Material was relevant, useful and presented in ways that made sense.”

The majority of respondents (92%) agreed that the master of ceremonies and conference keynote speakers were engaging, organized, easy to understand, and relatable.

There were many breakout sessions for participants to choose from and overall, workshops were rated highly by participants.

2009 ALBERTA FASD CONFERENCE EVALUATION: Promising Practices, Promising Futures, February 12-13

The highest percentage of respondents had heard about the conference through a co-worker (34%), followed by hearing about it by e-mail (30%).

The majority of respondents rated the registration, facility, community showcase, and overall conference experience as either excellent (52%) or good (42%).

Examples of comments having to do with increased knowledge and access to educational resources are presented below:

“I was pleasantly surprised by the caliber of speakers. It was time well spent.”

“The conference was quite interesting and very educational. I would recommend this to others.”

“Well organized, good presenters, great resources.”

“The conference was good. The community showcase I found lacking, there could have been more information and people available to talk to.”

The keynote speakers and the MC of the event received positive ratings from participants who completed the evaluation form.

There were many breakout sessions for participants to choose from. Overall, workshops were rated highly by participants.

2010 ALBERTA FASD CONFERENCE EVALUATION: Promising Practices, Promising Futures, February 8 and 917

The 2010 Alberta FASD Conference focused on specific FASD topics based on the strategic pillars of the FASD 10 Year Strategic Plan.

Topics included: education and training, prevention and awareness, community capacity and collaboration, diagnosis and assessment, research and evaluation, supports for individuals and caregivers, and innovative practices.

The 2010 conference also included a special focus on caregiver well being.‐

The highest percentage of respondents heard about the conference from a co-worker (32%), followed by hearing about it by e-mail (30%).

The majority of respondents rated the registration, facility, community showcase, and overall conference experience as excellent (61%) or good (35%).

Conference evaluation data indicated it was a very successful learning opportunity, with 97% of evaluation respondents rating their overall conference experience as “excellent” or “good.”

Open-ended responses included statements that the conference gave useful information/strategies to apply to participants’ work, and that the MC and keynote speakers were insightful, well informed, engaging and relevant to being able to continue this work.

Examples of comments having to do with increased knowledge and access to educational resources are presented below:

“Excellent and informative - engaging - overall really good, super presentation and well organized.”

“I really enjoyed this conference and received a lot of valuable knowledge and info for my job. Thank you!”

In terms of access, one participant noted: “Government support allowed us to attend – it is so appreciated. As parents of children with FASD the value of this conference cannot be overstated.” Another comment was “Only suggestion – very costly accommodation for families. We were sponsored by government, but for parents, could they afford to come?”

2011 ALBERTA FASD CONFERENCE EVALUATION: Promising Practices, Promising Futures, November 21-22

This multidisciplinary conference focused on how FASD impacts individuals, families, communities, and society at large. The two-day event had a focus on mental health and addictions issues.

The highest percentage of respondent had heard about the conference through a co-worker or supervisor (28%) followed by e-mail (22%).

The majority of respondents rated the registration, facility, community showcase, and overall conference experience as either excellent (57%) or good (36%).

Examples of representative participant comments having to do with increased knowledge and access to educational resources are presented below:

“Good speakers, quite informative.”

“Very helpful information. Good sessions. I enjoyed both plenary speakers.”

“Thank you everyone for this opportunity to network for more strategies. Extremely helpful.”

“I just wanted to say thank you and how much I appreciated the opportunity to attend the Calgary Conference. I love being able to interact and listen to and meet other people, and always come away feeling hopeful, and gaining new ideas and knowledge.”

2012 ALBERTA FASD CONFERENCE EVALUATION, Promising Practices, Promising Futures, October 22 – 23.

The theme for this upcoming conference was “Creating Connections, Building Relationships, Growing Communities…”

Best Practices Related to Educational Programming for FASD Conferences:

Evidence of Principle 5 “Evaluate programs and use the data to improve program effectiveness.” Evidence of Principle 6 “Provide support for learning at the individual, organizational, and provincial

levels.”

2D: FASD Presentation: Speaker Series

On May 29, 2012, the FASD-CMC co-presented on FASD to Government of Alberta staff.

Approximately 35 people attended the session. Of those who completed the evaluation (n=14), 93% found the presentation interesting; 86% of respondents found the presentation useful, and 93% would like to attend a similar presentation in the future.

Other Related Provincial Initiatives:

The section above provided an overview of major province-wide FASD activities cross ministry in scope. The following initiatives are highlighted to demonstrate other FASD-CMC related activities.

2E: The Alberta Council Parent Child Assistance Program

The Alberta Parent-Child Assistance Program (PCAP) model20 has been chosen in Alberta to provide services for prevention of FASD.

The purpose of the PCAP Council is to assist programs to adhere to the research-based, validated PCAP model to promote program fidelity and quality assurance.

The PCAP Council has coordinated training from the Seattle team with either Dr. Grant or Nancy Whitney facilitating the training. The Washington PCAP program has 23 years of ongoing research and experience leading their practice with high-risk substance abusing mothers. Dr. Grant spearheaded the PCAP program and continues to have an integral role with the existing program in Seattle.

Table 10 Enrollment for the PCAP Trainingc

Month Number of ParticipantsMay 2009 -36 participantsSeptember 2009 -30 participantsJune 2010 -16 participants February 2011 -25 participants 4 observers (FNIHB funded)April 2012 - undetermined at the time of the writing of this report

The Addiction Severity Index (ASI) is a reliable assessment tool and was chosen by PCAP to assess addictions, medical status, employment and support, family/social status, psychiatric status, and legal status among PCAP participants21

cPCAP Training data provided by Andrea Ingstrup, March 2012

Table 11. Enrollment for ASI Training

Month Number of ParticipantsAugust 2009 -35 participantsNovember 2009 -18 participantsJune 2010 -17 participants (FNIHB funded)June 2011 - 26 participantsMarch 2012 - 27(FNIHB funded)

PCAP has distributed a CD of recommended forms for use by PCAP employees to ensure there is consistency in what is being collected and reported.

The most recent Alberta Training Schedule recommendations are presented in Table 12 below:

Table 12. Alberta Training Schedule Recommendations

The PCAP

newsletter contained information about their training initiatives. 22

Mandatory Training

ASI Training

ASI training was recently completed in Calgary on June 8-9, 2011.

PCAP Theoretical Framework and Program Management Training

Best Practices Related to Educational Programming for PCAP:

Essential PCAP TrainingWithin first 6 months

Suggested TrainingWithin the first 18months

3 day PCAP Training Co-occurring Mental Disorders

Addiction Severity Index (ASI) Training (recommended for supervisors)

First Aid & CPRInfant Developmental Stages and care giving techniques with emphasis on alcohol/drug exposed children

Cultural competency Fetal Alcohol Spectrum Disorder (FASD)-101Effective Interventions with FASD Affected Individuals

FASD Case Management

Applied Suicide Intervention Skill Training (ASIST)Motivational Interviewing (MI) 1&2 Observation and DocumentationRelationship Based Practice Training (1&2) Financial LiteracyAddictions Training(Alcohol and Drug Abuse, Help Kit Training (Alberta Health Services Addiction and Mental Health) Enhanced Services For Women (ESW))

Car seat safety for infants and children

Family Planning –Sexual Health (methods, contraception’s, side effects)

Nutrition- Maternal/Infant

Trauma Informed Practice Public Legal EducationGrief and Loss Breast FeedingDomestic Violence Compassion FatigueNon-violence crisis intervention (Crisis Prevention Institute (CPI))

Family Law

Harm Reduction Confidentiality and Freedom of Information and Protection of Privacy (FOIP)

Evidence of Principle 3 “Facilitate the integration of learning into the professional’s workplace and clinical practice.”

2F: Lethbridge College FASD Education CertificateIn 2007, Lethbridge College introduced the Fetal Alcohol Spectrum Disorder Education certificate program, offered through eCampusAlberta.23 The one-year certificate program, which can be taken full time or part time, addresses the growing need to understand how to better support individuals affected by FASD.

While all courses are online, the program includes two practicum opportunities, which students complete in their own communities. Students, numbering around 30 at any given time, are from across Canada and are, for the most part, professionals already working in the human services field who want to supplement their knowledge.

Program graduates usually find careers in:23

Addictions support services Special education Employment support services Mental health Residential support services Foster care services Child and youth care services Family services and support Justice agencies

Graduates are also eligible to enter into year two of the Disability and Community Rehabilitation diploma program, which is also offered by Lethbridge College through eCampusAlberta.

Although not directly funded by the FASD–CMC, this example is included because it demonstrates a ripple effect and shows capacity for FASD education in the province. The following is cited from the eCampus Alberta website.

Best Practices Related to Educational Programming for Lethbridge Program:

Evidence of Principle 2,”Incorporate principles of adult learning theory into the program design/delivery.”

Evidence of Principle 3, “Facilitate the integration of learning into the professional’s workplace and clinical practice,” by way of practicum opportunities.

Evidence of Principle 4, “Increase learner accessibility by providing e-learning opportunities.”

2G: On-line Community of Practice

FASD On-line Community of Practice is a new resource site that was launched in 2012. It provides a way for people to connect and communicate with each other, build and join groups, post resources, and participate in discussions. The site can be found at www.fasdcommunity.ca.

This is an innovative way to connect families/caregivers, service providers, students, researchers, and others interested in learning more about FASD and sharing information and resources.

In June 2012, there were over 240 members registered on the website. There have been several groups started and the site includes an events page to promote upcoming training opportunities.

Section 3: Ministry-specific Initiatives

This section highlights ministry-specific initiatives undertaken by partnering ministries using their allocated portion of the FASD funding, in alignment with the Strategic Plan and ministry priorities.

The information provided is taken, for the most part, from the 2010-2011 Annual Report for the Cross-Ministry-Committee FASD Initiative,17 and enhanced with other sources when available.

This section consists of information from the following ministries:

A. Human Servicesd

B. Health and WellnessC. EducationD. Gaming and Liquor ControlE. Solicitor General and Public SecurityF. Senior

Some of the training and educational resources highlighted below are the result of collaboration between ministries and therefore may span across more than one ministry. In those instances, cross-references are made. A section summary and evidence of best practices in educational programming are also included.

3A) Human Services

The Government of Alberta FASD Learning Series: introduced in 2007 to increase capacity to support those affected by FASD. Refer to Section 2 of this report for more information on the FASD Learning Series.

In February 2011, Human Services requested that CASA Child, Adolescent, and Family Services create a teaching tool based on the FASD Learning Series sessions that had been produced to date. The idea of the toolkit came out of many discussions with those working with persons affected by FASD who emphasized the need for materials which could be used in practice settings to develop more advanced knowledge and skills. CASA contracted with content experts to review the archived videos, prepare the DVD liner notes, and create the teaching materials. The content was prepared from March to August, 2011.

Each toolkit consists of a set of learning resources for 3 topic areas: FASD Basics, Interventions, and Family and Life Skills. The learning resources for each topic includes 7 DVDs pertaining to the topic, liner notes for each DVD summarizing the content of the DVD, and one workbook of teaching materials for each topic.

dReorganization of Government of Alberta in fall 2011 resulted in the Ministry of Children and Youth Services and Employment and Immigration now being part of the new Ministry of Human Services.

In the fall of 2011 the toolkit was pilot tested by 6 FASD Service Networks. Feedback gathered from the pilot test in January 2012 indicated that the toolkit is a useful tool that could be improved with editing and updating. Recommendations from the pilot test were that the toolkits be revised and distributed for use by all FASD Service Networks throughout the province, that both electronic and hard copies be made available to the Service Networks, and that the use of the kits be evaluated again in February, 2013.

The FASD Community of Practice (FASD-COP): Between 2009 and 2011, a research project was carried out in five regions across Alberta through a partnership between the Human Services Ministry, the University of Calgary’s Faculty of Social Work, and an FASD consultant. The purpose of this research project was to improve outcomes and placement stability. This resulted in a final report completed summer 2011 by Dorothy Badry and William Pelech of the University of Calgary.19

This project involved senior ministry staff, the FASD Cross Ministry Committee, The Centre, five project regions (1, 7, 9 & 10) of Children & Youth Services (both rural and urban), and a comparison region (6). A training session was offered for this comparison region upon completion of the project.19

The project was founded on the belief that the application of ‘Promising Practices” (identified as part of the FASD-COP research as respite, collaboration, training, and worker contact) could improve the care of children with FASD. From 2009 to 2011, impacts on children, caseworkers, and foster parents were examined over 15 months in four project regions (n=98) and a comparison region (n=84).

Promising Practices included:

a commitment to children/youth with FASD in care having permanent placements; transitional plans on record by 16th birthday; assessment for suspected cases of FASD; provision of a minimum of 48 hours of respite per month, per child/youth; collaborative support plans developed with caseworkers, foster care support workers, and foster

parents; minimum 12 hours of training required prior to placement and respite care ; and caseworkers were required to meet at least once a month with caregivers.

The Promising Practices also provided 12 hours of FASD-specific training19 for caregivers. Eighty-five percent of caregivers in the Project Regions completed the requisite FASD training. Within the focus groups that were conducted as part of the FASD-COP, both caseworkers and foster parents/caregivers consistently mentioned the importance and value of training. Training included caseworkers and foster parents in the same sessions. Taking part in this activity together was found to facilitate deeper connections and common understandings of the needs of children and youth with FASD; having all members of the “team” together on behalf of the child/youth enhanced the development and growth of a community of practice.

Funding for FASD Demonstration Projects 2011-12: the information in Table 13 highlights the FASD Demonstration Projects for 2011-12 that identified either training or education resources as part of the description of their funded project.

Table 13. 2011-12 FASD Demonstration Projects

SIKSIKA

Siksika Awakenings incorporates FASD prevention and supports in various programs including pre/postnatal care, mental health treatment, parenting and family life skills, and provides in-service/training to health professionals and families.

MÉTIS NATION

Primary Prevention and Awareness is a FASD awareness and prevention program in the Métis communities that coordinates services such as diagnostic and assessment services for children and adults, mentorship programs, school based supports, family networking, prevention/awareness activities, and workshops/training. It also includes the dissemination of a culturally appropriate video.

CFSA REGION 3

AVENTA Addiction Treatment for Women provides addiction treatment services for women with alcohol, drug, nicotine, and/or gambling addictions. Pregnant women are a priority at AVENTA and receive support care relative to their pregnancy, aftercare addiction treatment, and parenting resources.

Kaleidoscope provides transitional supports and pre-employment training to youth and young adults affected by FASD.

CFSA REGION 4

Outreach Project is a community outreach service that provides support for families and individuals affected by FASD from a life-span approach. Services for adults include peer support, respite care, life-skills training, and advocacy. Services for children and youth include linkages to services/advocacy and creation of opportunities to participate in age-appropriate community activities.

CFSA REGION 7

Lakeland Centre for FASD is an integrated model of care that provides coordinated services such as: diagnostic and assessment services for children and adults, mentorship programs, school-based supports, family networking, prevention/awareness, workshops and training for community and service providers. For example, FASD training has been provided to a number of different communities from past quarters such as Buffalo Lake, Kehewin, and Onaway.

Other Training Opportunities:

Case Plan Review, CFSA Region 5 FASD Network: Between December 2011 and May 2012 – 5 days of consultation (4 “cases” per day) occurred within region 5 and for the region 5 FASD Network.

FASD training conducted by Donna Debolt:

March 31, 2008 to April 31, 2009 FASD Level 1 - 98 FASD Level 2 - 21

March 31, 2009 to April 31, 2010 FASD Level 1 - 0

FASD Level 2 - 41

March 31, 2010 to April 31, 2011 FASD Level 1 - 107 FASD Level 2 - 24

March 31, 2011 to April 31, 2012 FASD Level 1 - 37 FASD Level 2 - 33

Human Services (previously Employment and Immigration):

Awareness and training for staff and Aboriginal Service Delivery Partners was provided in High Prairie, Coaldale, Calgary and Hobbema.

Four training sessions were held in 2010-2011 31 Human Services (then Employment and Immigration) staff participated in awareness training 28 First Nation staff participated in awareness training

In the 2010-2011 fiscal year, 42 Aboriginal communities engaged in one or more presentations or sessions completed by the Lakeland Centre for FASD. These sessions ranged from basic FASD information to diagnosis and referral information, prenatal classes, and justice sessions.

Lakeland was also involved in 37 community development activities at a variety of locations including schools, parental support groups, justice agencies, health centres, and the RCMP. Subject matter of the activities ranged from information sharing and services to awareness and training. Bonnyville held 3 training events entitled: “Is this an appropriate referral?,” “Practical training for working with adults with FASD,” and “Case Management for Youth with FASD.” Lac La Biche also held one event entitled “How to talk with Birth Families about FASD Diagnoses.”

Noteworthy: The total number of training participants who engaged in all of these sessions or training in the 2010-2011 fiscal year was 1250.

3B) Health and Wellness

Network Grants: Although Human Services (previously Children and Youth Services) is the primary contributor of funding to the FASD Service Networks, Health and Wellness provided restricted grant funding to the Service Networks to carry out FASD assessment and diagnosis. To ensure support services are provided, Human Services provided additional funding to the Service Networks for support services. This is an example of how ministries work together to provide joint resources.

FASD Educational Program for 3rd year Pharmacy Students:

In collaboration with the Faculty of Pharmacy and Pharmaceutical Sciences at the University of Alberta, and the Alberta College of Pharmacists, The Centre initiated a web-based survey to gauge the level of interest among Alberta pharmacists in learning more about FASD and engaging in awareness and prevention efforts.

The survey was distributed to 3400 practicing pharmacists, of which 566 responded. More than half of respondents were interested in participating as a community resource in FASD prevention. Approximately 75% of respondents felt they could benefit from training in FASD awareness, treatment, and patient education, and indicated their willingness to distribute awareness and prevention materials to clients in their communities.

Based on these findings, The Centre proposed a knowledge mobilization strategy to develop and implement courses and programs to engage practicing pharmacists and pharmacy students in FASD awareness and prevention efforts. A literature review completed by The Centre resulted in the development of a three-hour education program delivered to University of Alberta Students on April 13, 2011.

A pilot program offered on April 13, 2011 to 127 third-year Pharmacy students allowed for recommendations and revisions for future courses.24

The course will be delivered face to face, with the Edmonton session being webcast live throughout Alberta and recorded for submission to be accredited as a web-based distance education course. The work on the pharmacist initiative has resulted in the development of an accredited FASD educational course for practicing pharmacists.

Student Health Initiative for the Needs of Edmonton (SHINE) Clinic Initiative: The Centreis overseeing the development of an educational FASD program for the interdisciplinary students at the SHINE clinic, including training in communicating skill development and approaches to patient education for the inner city population.

From April to October 2011, an Interdisciplinary FASD Educational Program designed for the SHINE Clinic students and preceptors was developed. The program was presented to SHINE Clinic students and others at a learning event held on November 20, 2011 at the University of Alberta.

The event was attended by approximately 60 people, including students from the faculties of: Social Work (5), Nursing (6), Medicine and Dentistry (15), Pharmacy and Pharmaceutical Sciences (23), Food and Nutrition Science (4), Educational Psychology (3), and Rehabilitative Medicine (1). Public Awareness Campaign: The Centre facilitated the development and distribution of an informational pamphlet to be distributed through pharmacies across Alberta: “Healthy You Healthy Baby, Is it Safe to Drink during Pregnancy”

Five thousand pamphlets have been printed and include distribution to: Participants at the Centennial conference (1250 pamphlets) All Primary Care Networks across Alberta (750 pamphlets) The CanFASD Northwest Network (1000 pamphlets) The FASD Clinic at the Glenrose Hospital (1000 pamphlets) The Centre

The Adult Assessment and Diagnostic Clinic project includes three phases: research/reassessment of individuals with prenatal alcohol exposure (PAE), delivery of the assessment and diagnostic services and evaluation of the diagnostic service delivery model, and contribution to public policy and development of training materials.

One end goal of the Adult Assessment and Diagnostic Clinic project is to contribute to Alberta policy on adult FASD assessment and diagnosis. In addition, the development of training, service delivery, and evaluation materials is slated for year three of the project.

Lakeland Training Contract: Alberta Health and Wellness contracted the Lakeland Centre for Fetal Alcohol Spectrum Disorder to produce the following training and informational materials regarding FASD:

Diagnosis & Assessment Clinic Training – In 2010-2011, Lakeland surveyed Provincial FASD Diagnostic and Assessment Clinic teams to identify challenges with regard to training needs, particularly the context of new diagnostic teams or those faced with team member attrition.

In terms of access, common themes emerged when participants were asked:

“Are there any barriers or challenges you see for yourself or other members of your team in accessing training?”

Workloads and time commitments from team members. Financial restrictions of accessing training. Location of training and delivery format. Lack of awareness of available training.

Diagnosis & Assessment Clinic Training Plan -In a survey of the Provincial FASD Diagnostic & Assessment Clinic Teams, the following themes were identified from 31 interviews with team members:

Need for a continuum of training and support needs from outset. Consistent training to be provided in multiple modalities (i.e. face to face, online, etc.). Diagnostic Team Coordinator-specific training. Coordinated support for general FASD and related training; an FASD 101-type tutorial for members

new to the field or unfamiliar with FASD. Coordinated dissemination of information including research and literature.

Out of these themes, recommendations proved a need for other types of documentation to aid in improving Diagnostic & Assessment Clinics.

An overarching theme regarding training needs was that teams are pushing for consistency across the province in training while maintaining site autonomy. The most desirable form of training was cited as face to face, however, the cost-effectiveness of other modes of delivery was acknowledged by all. Some of the commonly cited training needs were as follows:

Information about Freedom of Information and Protection of Privacy Act (FOIP) and Health Information Act requirements about sharing information.

Cultural competency training. Training in understanding and translating results from speech language pathologists, occupational

therapists, and psychologists. Obtaining information on prenatal alcohol exposure.

Diagnostic & Assessment Clinic Manual - This manual is intended as a guide for diagnostic and assessment teams and outlines processes and procedures around all facets of a diagnostic clinic, the components of service delivery, and a guide for diagnostic team members to follow from prevention and intervention to diagnosis, case planning, and evaluation.

Internet Resources for Diagnostic & Assessment Clinics: This document contains FASD diagnostic and assessment related content. Included are provincial, federal, and international websites as well as government legislation found online, and any website-based learning materials regarding FASD. Also included are: a list of training offered locally and globally both online and in-person as well as government reports on FASD initiatives, academic journal articles and books both for general audiences as well as directed to specific team members, professional development opportunities and contact information. All content is intended as a reference to assessment and diagnostic teams.

Diagnosis Assessment Clinic Training and Support: A grant has been provided to Lakeland for training and addressing the findings from the survey. In-depth diagnostic/assessment training for clinics, which include an observation of an operating clinic, has occurred with South FASD Network in a specifically adult diagnostic/assessment clinic with Standoff Reserve – September 2011.25

Clinic coordinator training has occurred with the Standoff/Lethbridge Adult team, High Level PHN team, and Siksika clinic coordinator.

In 2012, a grant was been provided to NorthWest Central FASD Services Network Society for training around the Health Information Act (HIA) to assist the Networks in “connecting competence and confidence; supporting FASD Clinics towards HIA compliance.”

Noteworthy:26 Prior to 2007, there were only four or five FASD Diagnostic & Assessment Clinics operational across Alberta. In the past 3 years, with the support of the FASD Cross Ministry Committee Initiative (FASD-CMC), the number of FASD Diagnostic & Assessment Services has more than doubled. This has led to an increase of community-based services for individuals and families and an increase in the number of FASD assessments and diagnoses completed and an increase in coordination of training and educational resources. There are now 25 clinics in place in Alberta, with two more under development. Rajani FASD Assessment & Diagnostic Clinic Training Services Project: June, 2012 marked the one-year anniversary of the Rajani FASD Assessment & Diagnostic Clinic Training Services Project. The intent of the Training Project is to provide a continuum of training and supports for clinics throughout the province and to promote training consistency for new and current teams. Clinics have identified the importance of general “FASD 101” training for new team members as well as targeted, peer-delivered training for clinicians and coordinators and other team members. Training and mentorship supports on-going team development and sustainability as well as increasing the confidence in providing consistent assessment and diagnostic services.

In the coming year, the project will continue to provide training, information and links to new research, resources and information about best practices, as well as training, mentorship, feedback, and support to new and current teams.

In May, 2012, The Lakeland Centre for FASD’s 10th Annual Clinic Training Event was held in the new Edmonton Clinic Health Academy Building at the University of Alberta. Anticipated registration for this training was estimated at 35-40 participants. The 3- day training saw 60 individuals attend, with over 30 on the waitlist.

The event was represented by numerous disciplines, including Justice (federal and provincial), Speech Language and Occupational Therapists, Registered Psychologists, Coordinators, Health Practitioners (LPN’s, RN’s and Nurse Practitioners), Social Workers, Mental Health Therapists, Addictions Workers, and representation of clinic team members from current and new clinics across the province. Highlights of this training included a live, on-site diagnostic clinic, presentations from pediatricians, psychologists, speech language pathologists and occupational therapists, clinic coordinators and a parent. On the 3rd day, there

were opportunities for individual professions to join break-out sessions and discuss specific topics of interest.

3C) Education

The Wellness, Resiliency and Partnership Project (WRaP)27completed its second year of operation in June, 2011. The WRaP project provides support for junior high and high school students in Alberta with FASD. Moving into the third year of operation, the project has expanded to include 17 schools in 10 school districts with 8 FTE success coach appointments associated having served 100 students affected by FASD. Success coaches work within the schools to provide individualized, targeted, and universal supports for students affected with FASD. The project focuses on outcomes that maximize school engagement, increase academic success and enhance the social, emotional, and physical well-being of each student involved.

Eighty-four percent of the courses students initiated were successfully completed in the 2010-2011 school year. Students participating in the WRaP project are able to take courses in one of four academic streams: regular, adapted, modified, or knowledge and employability. Although there were students who did not complete courses initiated, 84% of students did complete their coursework successfully.Noteworthy: Teachers and school staff report less acting out in class and a decrease in suspensions that they believe to be attributed to the ongoing support and presence of the success coaches.

The project coordinator determined that a common course of training should be delivered throughout the year to ensure that all coaches have the knowledge and training required to be effective. To that end, the coordinator identified thirteen Essential Elements and used the weekly meetings over the course of the year to deliver training and information related to the following elements:

1. Understanding FASD2. School Culture3. Strength Based Services4. Wraparound Approach5. Learning Strategies – Activities of Daily Living 6. Learning Strategies – Positive Behavior Supports7. Learning Strategies – Communication Skills8. Learning Strategies – Pyramid of Intervention9. Learning Strategies – Assistive Technology to Support Literacy10. Learning Strategies – Theory of Engagement11. Community Resources12. Managing Student Disclosures13. Transitions

A recommendation from the Year 2 evaluation conducted by KPMG is to continue to formalize an approach to training and mentorship, maintaining the WRaP Project’s strong emphasis on professional development.

During Year 3, the WRaP project has supported and participated in the following activities to support service providers and families/caregivers in training and educational resources that are based on research and leading practices:

Shared information with families, students and school staff on FASD.

Set up infrastructure to provide training to coaches throughout the province including weekly meetings, mentoring, videoconferencing, Skype, conferences, and webinars.

Established a provincial video conference series in the 2011 – 2012 school year, offered to schools on six topics: student disclosure, strength based services, sensory management, positive behavior supports, theories of engagement, and transitions.

Presented at the 2011 provincial FASD conference “Promising Practices, Promising Futures.” Presented at two teacher conventions, several school and district PD days, and to trustees on FASD

and the project.

In addition to the Essential Elements discussed at team meetings, coaches attended several professional development sessions over the course of the year.

Success in School for Children and Youth in Care28– Provincial Protocol Framework (PPF) is a joint initiative between Alberta Education and Human Services to support improved school outcomes and high school completion rates for children and youth in provincial government care.

The initiative provides opportunities for collaboration at a local level with the child/youth, their caregivers and other appropriate partners to share information and engage in joint decision-making to plan for and support school success for children and youth in care.

Twenty workshops with over 600 participantse have been held across the province. Participant feedback is positive, with the vast majority of participants indicating a belief that they are more prepared and knowledgeable to implement the protocol and work with each other in support of school success for youth in care as a result of participating in the workshop/training sessions. The training has included school and Child and Family Service Authorities staff as well as agency staff and foster parents. Information about the Success in School initiative will be included in the delegation training for every social worker coming into the system.

3D) Gaming and Liquor Control

In support of prevention of FASD, the Alberta Gaming and Liquor Comission (AGLC) provides two types of training for individuals in the service industry. ProServe Liquor Staff training and ProTect Security Staff training are required for liquor industry staff and reach a widespread audience.29 In addition to these programs, AGLC has developed an accreditation and award program for bars, clubs and lounges called Best BarNone. This program encouraged licensed establishments to offer free or reduced cost non-alcoholic beverages to pregnant patrons.

In the fall of 2010, AGLC partnered with Canada’s National Brewers and the Alberta Liquor Store Association on a collaborative campaign whereby FASD static cling posters were sent to 1200 liquor stores across Alberta and approximately 1000 Class A Minors Prohibited licensed premises. To further this message, in the 2011-2012 fiscal year, a partnership with the Council of Alberta University Students and the Alberta Graduate Council will allow for the static cling posters to be sent to Alberta post-secondary institutions and licensed premises on campuses.

e Note these workshops are not specifically designed as training on FASD. As such, these numbers are not included in Appendix A. However, participants would likely come into contact with students with FASD through this initiative.

In partnership with the Council of Alberta Universities Students (CAUS) and Alberta Graduate Council (AGC), AGLC has distributed 188,000 coasters and 2000 posters on FASD prevention and awareness to public and private universities, colleges, and technical schools in Alberta.

AGLC used the allotted $10,000 FASD-CMC monies as follows: FASD coasters and posters (spin the bottle campaign graphic) were made in collaboration with the Council of Alberta Universities Students and Alberta Graduate Council for public and private universities, colleges and technical schools and distributed through their organizations. September 2011 distribution was done through student associations, the Grad Council and Student Life offices on campuses. Coasters will be used on campuses in licensed premises and in common areas and meeting spaces. Accompanying letters (two versions, one from the partners and one from AGLC, sent as appropriate) were provided. In total 188,000 coasters and 2000 posters have been distributed (in addition to the 25 schools, each of the 12 FASD Service Networks received 1000 coasters and 5 posters, and a total of approx. 23,000 coasters to CMC partners).

In addition, Grant MacEwan University Peer Support is looking for someone to talk to them about FASD; contact information was provided to the CMC Chair for follow up.

3E) Seniors

Case Management Training by Donna DeBolt through the Supports and Services Council of Alberta.

Purpose of the Training

To provide systemic training of professionals and community members to work differently and in partnership for the prevention of FASD and towards the support and intervention for those already affected. Through training collaborative partnerships are created to provide a “no wrong door” experience for individuals with FASD and their families and caregivers.

Goals and Objectives

1. To provide a conceptual framework for the understanding of the primary and secondary behavioural characteristics often seen in children and adults with an alcohol-related disabilities.

2. To provide a model of successful techniques for supporting individuals with FASD.3. To provide a framework to apply the information to community development principles.4. To build on existing strengths within communities, within families and within case management

opportunities for professionals.5. To expand the available options for effective parenting, case management and community

interventions.6. To enhance existing programs within the community and the province that is serving affected

individuals and families through education, support, and collaboration.7. To support the development of new programs within the province that is designed to assist affected

individuals and caregivers in coping.8. To increase short term effectiveness of interventions through reduced frustration, decreased

professional burnout, and improved outcomes for children and families.9. To create a philosophical approach that supports the reduction of risk and the enhancement of

protective factors.

10. To influence and modify existing policy and practice within the community in relation to intervention with individuals and families with are managing the complicated issues surrounding FASD.

Framework for the Program

Between January 1 and March 31, 2011, 6 one-day sessions occurred (Calgary, Red Deer, High Prairie, Bonnyville, and two in Edmonton). In response to an individual need, a 2-day session occurred in Lethbridge. Each region was responsible for the organization of the day, including advertisement, securing a location, and completing registration.

Results Achieved:

Summary: 6 training sites – 212 participantsLethbridge – 195 participants

Recommendations from the training:

1. Agencies contracted through the Service Networks must establish core competencies through mandatory training. This will assist in staff retention in a business that has “accepted” transitional issues due to low pay and high demands.

2. Create clinical supervision options for agencies providing services through establishment of formal of case plan review.

3. Individuals with FASD require lifelong intersectoral services. 4. There continues to be a lack of expertise among professionals charged with the responsibility of

intervening in the lives of individuals with this complex disability. Recommendations noted that this is a priority and that all training to this end must include clinical supervision and coaching.

3F) Solicitor General and Public Security

In 2010/2011 fiscal year, FASD training was provided to 730 participants, which included:

181 Solicitor General and Public Security Staff 265 police/victim services/youth justice 65 John Howard staff 50 teachers aids 169 other (e.g., group home staff, other community partners)

The training covered a variety of topics such as an overview of what the Ministry is doing with respect to FASD in collaboration with the FASD-CMC, the criteria for a diagnosis of FASD, the cognitive deficits associated with clients with FASD, strategies to manage the behaviors of individuals with FASD in a custodial or community setting, and tools to work with clients with FASD who have addictions issues.

In an effort to engage participants, training content was modified for each group, and evaluations completed by participants showed that this was an effective use of frontline staff’s time and energy. On a rating scale 1-10 (with 10 being the highest), 86% of participants gave a rating of between 8-10 when asked

if the information received increased their knowledge base of FASD, and 86.5% of participants gave a rating of 8-10 when asked if the information was applicable to their own workplace.

Frontline Staff Awareness and Educational Programs

FASD Initiatives Training includes the following:

1. Awareness of what the Ministry is doing with respect to FASD in collaboration with the FASD-CMC.2. A basic knowledge of the criteria for a diagnosis of FASD.3. Awareness of indicators of FASD in our clients (physical and behavioural).4. Cognitive deficits associated with clients with FASD.5. Strategies to manage the behaviours of individuals with FASD in a custodial or community setting.6. Tools to work with clients with FASD who have addictions issues.7. Awareness of supports for clients with FASD. 8. Specific issues for staff and FASD clients in a custodial setting.

Beyond Trauma: A Healing Journey for Women: The Beyond Trauma Program was developed by Dr. Stephanie Covington and explores the interrelationship of substance abuse, trauma and mental health. It is comprised of three modules with a total of 11 sessions and uses workbooks, role-playing, and guided imagery.

Courage to Change: The Courage to Change Program uses research-based material and focuses on the use of interactive journaling as a method of change relating to criminal and substance abuse behaviours. Train the trainer occurred in February 2011 and the program will be implemented in the young offender centres and youth attendance centres in Alberta. The contents of the program have been adapted for the FASD offender.

Voices: Voices is a program created by Dr. Stephanie Covington to address the unique needs of adolescent girls and young women. The program encourages them to seek and celebrate their “true selves” by providing a safe place, encouragement, structure and the support they need to embrace their journeys of self-discovery. The program consists of four modules: Self, Connecting with Others, Healthy Living and the Journey Ahead. It is grounded in theory, research and clinical experience. Materials have been purchased and both of the two young offender centres in Alberta are implementing this program. The contents of the program have been adapted for the FASD offender.

Life Skills and Employability Program: Solicitor General Public Security staff at Peace River Correctional Centre developed a life skills program targeting adult male offenders identified as possibly being FASD-affected. The program is responsive to the special learning needs often associated with FASD and has the possibility of being incorporated into other correctional settings. Resource materials have been purchased to maintain delivery of the program. Seventy sentenced offenders participated in various aspects of the life skills program. In addition, Solicitor General and Public Security funded safety courses for 97 offenders to enhance their employability upon release from custody.

Corrections/Sheriff/Probation- Resource Materials: Resource materials specific to corrections and FASD needs have and will continue to be distributed to adult and youth correctional centres, attendance centres, and probation offices, and made available to the Sheriffs Branch. Materials include books and educational DVDs for both staff and offenders, and posters and pamphlets for display and distribution. Each probation

office, correctional facility, and attendance centre has a resource library consisting of books and DVD’s available for staff education and resource.

Education and information books and DVDs on FASD are also available for all offenders to access in order to gain knowledge and support with respect to issues surrounding the disabilities associated with FASD. Some of the resources available are specific to parenting skills, employability, addictions, gang affiliation, and life skills.

Training has been delivered utilizing the following methods:

1. Induction training for youth workers, sheriffs, and correctional peace officers2. FASD general course3. Probation officer training4. On-site FASD Awareness and Behaviour Management training tailored for the specific needs of

individuals and groups5. Conferences

Youth Justice Committee Conference Métis Nation Annual Conference Calgary Board of Education Support Staff Conference Calgary John Howard Society Annual FASD Conference Alberta FASD Conference

6. Tele-learning Sessions7. University and College Presentations

Correctional Services Program, Grant MacEwen University Youth and Child Care Program, Grant MacEwen University

8. Special Interest Groups Calgary Police Service Edmonton Police Service Zebra Unit RCMP ConocoPhillips Victims Services Unit Youth Justice Committees

Noteworthy: Between April 1, 2009 and March 31, 2011, 1,666 individuals received training in over 120 training sessions provided by the FASD Program Coordinators.

Evaluation of Training

In April 2011, an evaluation and summary of training provided in fiscal years 2009/2010 and 2010/2011 was undertaken to determine if any changes were required to training deliverance and evaluation. Information was gathered from FASD training evaluation forms distributed following FASD presentations.

The overall response to FASD awareness training has been positive. During the first fiscal year assessed, an average of 80% or more respondents rated the training as “good” or “very good,” with an increase to an average of 90% “good” or “very good” in the second fiscal year assessed. The increase in positive ratings may be attributed to the ongoing development of training materials that incorporate new and applicable information obtained through research and education. The lowest amount of positive response was to the question “How applicable is this information to your workplace?”. Revisions were made to the evaluation

form to reflect worksite information in an attempt to identify specific work areas that can be better supported.

The 3 C research project held January 2010 to January 2011 at the Fort Saskatchewan Correctional Centre saw 49 FASD-suspected offenders referred by staff from sentenced adult correctional centres. At the close of the project, 39 offenders were assessed and diagnosed as being FASD affected. This anecdotal evidence indicates that staff members within those institutions were effective at assessing traits and behaviours associated with probable FASD.30

Section Summary:

This section provided an overview of ministry training and education resources and provided examples of applications of best practices related to educational programming. Most notably, Principle 5, “The use of evaluation data to improve program effectiveness,” was applied. There is a mix of both training and educations resources for both service providers and families/caregivers offered by several ministries. Best Practices Related to Educational Programming Demonstrated in Ministry Initiatives:

Evidence of Principle 5 “Evaluate programs and use the data to improve program effectiveness.” For example, Health and Wellness and Solicitor General and Public Security used evaluation results to improve programs.

Evidence of Principle 7: “Provide educational programming that is culturally relevant and sensitive.” For instance, demonstration projects under Human Services incorporated culturally appropriate resources.

Section 4: Discussion

The purpose of this report was to offer answers to the following questions: 1) Is there evidence that service providers have improved knowledge of and access to training and educational resources that are based on research and leading practices? and 2) Is there evidence that families/caregivers have improved knowledge of and access to training and educational resources that are based on research and leading practices?The question of “improved knowledge” necessitates there to be a baseline from which to measure whether or not the amount of training and educational resources have increased. The idea for this evaluation was to select a point in time, Year 5, and review evaluation and other accountability documents to establish the current level of training and educational resources.

Prior to commencing the document review, a data matrix table was created and the outcome was broken down into measurable pieces with associated indicators. This was done to establish the elements of what would be considered indicators of credible evidence (see methods section for data matrix table). Credibility of information was established considering the source (e.g. Government reports), as well as criteria such as validity, reliability, practicality, and understanding of context. For several reasons, evidence of success in this case can best be provided through use of existing data. A document review is a practical way to access existing information and provides a depth of understanding of the context of FASD-related training and educational resources. Employing a document review to answer the questions acknowledges the magnitude of time and resources already invested in the evaluation of FASD training and educational resources. Furthermore, a document review reduces the burden of going back to (potentially already saturated) participants to solicit additional information on the same topic, albeit

perhaps asking the question in a slightly different way. It is important to note that triangulation of data was employed, to some extent, through review of multiple reports and verification with key stakeholders.

Ultimately, secondary data complements, but does not replace, primary data collection. As such, it is not possible to comment on the existence of a group of service providers or families/caregivers who do not have knowledge of or access to training and educational resources because the documents reviewed consisted of reports of training and educational resources. In other words, if the training and educational resources have been accessed, then the service provider or family/caregiver had knowledge of it. Results for the Year 5 Evaluation would be enhanced with the addition of a survey asking the population of service providers and families/caregivers directly about their knowledge of and access to training and educational resources.

Clearly, there have been training and educational resources offered and made available to both service providers and families/caregivers. As the intention of this report is to establish a baseline, the magnitude of improvement over pre-existing conditions cannot be estimated since the pre-existing conditions were not established. Notwithstanding the limitations, the summary of training occurring up to and including Year 5 of implementation of the Strategic Plan can serve as a proxy baseline (see Appendix D). A comparison can then be made in Year 7 and in Year 10 to see if training opportunities and educational resources have increased, decreased, or stayed the same.

One of the findings suggest some minor enhancements could be done to ensure promotion of training opportunities on the GoA FASD Service Network website and associated Service Network websites. Although it is recommended that the GoA FASD Local Service Network Site serve as a “one stop shop” for training and educational resources for service providers and families/caregivers, the reality is that many methods of promotion are required. For instance, most of the respondents from the conference evaluation heard about training opportunities through word of mouth or e-mail. Therefore, it is important to continue to promote these opportunities in a variety of ways. Special focus should continue to be placed on ensuring caregivers and families are aware of the training and educational resources.

Access barriers were noted in the FASD Alberta Diagnostic & Assessment Clinic Training Needs Survey, (see Appendix E). The barriers listed can be seen as general access barriers in terms of all training, and should be prevented or addressed to minimize obstacles for participation. The barriers noted in the report were:

Workloads and time commitments Financial restrictions of accessing training Location of training and delivery format Lack of awareness of available training

Suggestions to address the barriers are to ensure support from supervisors to attend training and implement the principles of “Best Practices Related to Educational Programming.” 1 Most notable for consideration are principles 3 and 4, facilitating the integration of learning into the professional’s workplace, and increasing learner accessibility by providing e-learning opportunities.

A further barrier, as noted by Service Network representatives at the June 5th 2012 mid-point evaluation update meeting, is that Service Networks themselves are not funded to provide training and education. However, some do provide it at the local level by accessing other funding. The lack of regular or consistent funding to address that need is seen by the Service Networks a barrier. Training, as noted by a Network

Coordinator, is integral to providing a concerted effort and for collaboration in terms of addressing this complex issue.

There is considerable uptake of the FASD Learning Series resulting in increased access to FASD information. This is supported by data demonstrating stronger uptake in rural regions, and by reports from participants stating the technology enabled them to participate.18 Therefore, maintaining support to the FASD Learning Series and continuing to promote the archived series is warranted. However, the group dynamics and networking opportunities are an important part of training opportunities. Examples of bringing people together, like the Central Alberta Network film reviews, offers an opportunity for participants to learn more about FASD and provides opportunities to ask questions, dialogue, and to connect with others. Local communities should be encouraged to continue to provide venues for hosting the videoconferences.

In terms of whether or not training and educational resources are based on research and leading practices, two findings are worth noting. First, focus group results reported all local Service Networks were aware of and up to date with current research and best practices. Second, awareness does not necessarily translate into action. In this case, however, the second finding is based on action. Service Network, provincial, and ministry level initiatives all demonstrated examples of implementations of best practices for educational programs. Most notable, in this author’s opinion, is evidence of Principle 5, “Evaluate programs and use the data to improve program effectiveness,” was noted in several instances throughout the report.

RecommendationsRecommendations for Government of Alberta FASD Strategic Plan Year 7 and 10 Evaluations:

1. Include a direct measure for this outcome by conducting a survey of service providers and families/caregivers to measure knowledge of training and educational resources in Year 5, and then repeat the survey in Years 7 and 10.

The most direct way to obtain a picture of change in knowledge of and access to training and educational resources is to ask the actual question to the intended recipients – service providers and families/caregivers.

This recommendation is to conduct a survey in Year 5 asking the target group about their level of knowledge of Service Network, provincial, and ministry related initiatives. This survey could also be used to note existing barriers to accessing training. Repeat the survey in Year 7 and again in Year 10 to assess a change in knowledge and if barriers have been addressed (or if new ones have emerged).

The documents reviewed served as a reasonable proxy measure and provided a description of training that has taken place and educational resources provided since the implementation of the Strategic Plan. However, the method could not provide an account of level of knowledge for those who have not accessed training and therefore may not entirely serve the purpose of creating a baseline for future evaluation.

2. All Service Network, provincial and ministry level initiatives should record and report attendance numbers broken down by type of attendee for all training events (service provider or family/caregiver) on a yearly basis and on a standard template.

This outcome and evaluation questions make a distinction between training and educational resources for service providers and those for families/caregivers. The majority of the documents reviewed did not include a reliable breakdown by type of attendee and many did not include participant numbers. All training

should be recorded (including number of participants by category: service provider, parent/caregiver or both) and sent to CMC with annual reporting in a consistent format for easy tabulation in Years 7 and 10.

Recommendation for Promotion of Training Events and Educational Resources:

3. The Government of Alberta FASD-CMC website should serve as a ‘one stop shop’ for service providers and families/caregivers for promotion of training and educational resources at the Service Network, provincial and ministry levels.

All provincial and ministry level training opportunities should be listed on the GoA website. If local Service Networks have their own sites, include their links on the GoA website. Encourage Service Networks to promote up to date training and educational resource opportunities on their websites.

Connect to other websites promoting related training opportunities:

FASD Child Welfare Interprovincial Community of Practice: http://www.fasdnetwork.ca/ FASD Community of Practice: www.fasdcommunity.ca

Recommendations for Training and Educational Resources:

4. Continue to offer opportunities for collaborative training (service providers and families/caregivers) to ensure that everyone involved with children/youth with FASD receive the same information and that this supports a consistent response. (Recommendation supported by information provided by research from Badry & Pelech, 2011).

5. Continue to support the FASD Learning Series and promote the archived series. (Recommendation supported by CASA Child and Family Mental Health, June 2011). Encourage group opportunities locally, to foster connections and conversations at videoconferencing and webcasting events.

6. Enhance training opportunities and educational resources for teachers and school staff. (Recommendation supported by information provided by FASD Community of Practice Showcase, group table discussions and by information provided in Alberta Centre for Child, Family & Community Research FASD Awareness and Prevention Campaign: Engaging Alberta Pharmacists, January 15, 2011 – August 15, 2011, Annual Report).

7. Promote the development, delivery, and dissemination of culturally relevant training, information, and resource materials. (Recommendation supported by information provided by CASA Child and Family Mental Health June 2011 report). Adhere to Principle 7 of best practices in educational programming -“Provide educational programming that is culturally relevant and sensitive.”

8. Expand FASD Educational Program for First Nations. (Recommendation is supported by information provided in Alberta Centre for Child, Family & Community Research FASD Awareness and Prevention Campaign: Engaging Alberta Pharmacists, January 15, 2011 – August 15, 2011, Annual Report).

9. Consider the implications of increasing Service Network funding to include provision of training and educational resources at the local level. (A barrier, as noted by Service Networks at the June 5 th mid-point evaluation update meeting, is that Networks themselves are not funded to provide training and education.)

10.Establish a provincial Education and Training Council to provide support (i.e., guidance, recommendations advice etc.) to the FASD-CMC on FASD education and training. (Recommendation is derived from discussions with stakeholders about preliminary evaluation findings.)

References

FASD GoA and Service Network Website URLs:

Calgary and Area Fetal Alcohol Network | Fetal Alcohol Spectrum Disorder GoA site: http://www.fasd-cmc.alberta.ca/local-service-networks/calgary-and-area-fetal-alcohol-network/

Calgary and Area Fetal Alcohol Network site : http://calgaryfasd.com/Central Alberta FASD Network | Fetal Alcohol Spectrum Disorder: http://www.fasd-cmc.alberta.ca/local-

service-networks/central-alberta-fasd-network/Edmonton and Area Fetal Alcohol Network GoA site:http://www.fasd-cmc.alberta.ca/local-service-

networks/edmonton-and-area-fetal-alcohol-network/Edmonton and Area Fetal Alcohol Network site: http://www.region6fasd.ca/home.php/Government of Alberta.Fetal Alcohol Spectrum Disorder.http://www.fasd-cmc.alberta.ca/education-

training/Lakeland FASD Society | Fetal Alcohol Spectrum Disorder GoA: http://www.fasd-cmc.alberta.ca/local-

service-networks/lakeland-fasd-society/Lakeland FASD Society | Fetal Alcohol Spectrum Disorder Network site: http://www.lcfasd.com/about.htmlMackenzie Regional FASD Network | Fetal Alcohol Spectrum Disorder GoA: http://www.fasd-

cmc.alberta.ca/local-service-networks/mackenzie-regional-fasd-network/Mackenzie Regional FASD Network GoA site:http://www.nwr-fasd.ab.ca/Northwest Alberta FASD Network site: http://www.nwfasdnetwork.ca/Métis Settlements FASD Network | Fetal Alcohol Spectrum Disorder: http://www.fasd-cmc.alberta.ca/local-

service-networks/Métis-settlements-fasd-network/Northeast Alberta FASD Network | Fetal Alcohol Spectrum Disorder: http://www.fasd-cmc.alberta.ca/local-

service-networks/northeast-alberta-fasd-network/Northwest Alberta FASD Network | Fetal Alcohol Spectrum Disorder: http://www.fasd-cmc.alberta.ca/local-

service-networks/northwest-alberta-fasd-network/Northwest Central Alberta FASD Network | Fetal Alcohol Spectrum Disorder: http://www.fasd-

cmc.alberta.ca/local-service-networks/northwest-central-alberta-fasd-network/Prairie Central FASD Network | Fetal Alcohol Spectrum Disorder: http://www.fasd-cmc.alberta.ca/local-

service-networks/prairie-central-fasd-network/South Alberta FASD Network | Fetal Alcohol Spectrum Disorder: http://www.fasd-cmc.alberta.ca/local-

service-networks/south-alberta-fasd-network/Southeast Alberta FASD Network | Fetal Alcohol Spectrum Disorder GoA site: http://www.fasd-

cmc.alberta.ca/local-service-networks/southeast-alberta-fasd-network/Southeast Alberta FASD Network site: http://www.seafan.ca/

Outcome 5:The planning and delivery of provincial government programs and services associated with FASD is accomplished through a collaborative approach.

Evaluation Question 5:Is a Cross-Ministry Committee structure effective in planning and delivering programs and services associated with FASD in a collaborative approach?

Evaluation Question 5a:How does the Service Network model compare with other models? Do other models exist for comparison? Have other models been evaluated?

Prepared By:Michelle Anderson-Draper

Acknowledgements

Funding for this report was provided by the Alberta Centre for Child, Family and Community Research (The Centre) via funding made available from Alberta Health, as part of the Government of Alberta’s Year 5 Evaluation of the FASD 10 Year Strategic Plan.

The author would like to acknowledge the role and contribution of Tara Hanson, Director of Knowledge and Partnership Development, The Centre, as well as the contributions of the FASD-Cross Ministry Committee. Information used in this report was provided by Holly MacKay and Sarah Nicolaiff, Fetal Alcohol Spectrum Disorder Initiative; Public Health Agency of Canada and Holly Gammon, FASD Programs, Healthy Child Manitoba Office. Dr. Gail Andrew, Medical Director of Preschool Services and FASD Clinical Services at Glenrose Rehabilitation Hospital in Edmonton, also provided useful contextual information.

Executive Summary

The purpose of this scan is to gain a better understanding of Fetal Alcohol Spectrum Disorder (FASD) system level models being offered across Canada, and to a limited extent internationally, to address FASD. This report is prepared as part of the overall Year 5 Evaluation of the Government of Alberta’s 10 Year FASD Strategic Plan.

The scan is intended to answer the following two questions:

1. Do other models exist for comparison in other provinces/jurisdictions?

To some extent yes, other models do exist in other provinces; however the western provinces appear to be leading the way in terms of a comprehensive and strategic approach to addressing FASD. In fact, only three provinces – British Columbia, Alberta, and Manitoba- had a strategic plan or formal strategy in place at the time of this scan. However, several other provinces appear to be moving in that direction or banding together to address the issue, as such is the case in the Atlantic Provinces.

This scan confirmed that there is great variability across Canada with respect to the nature and extent of FASD activity.1 Not surprisingly, the amount of online information available that expresses the efforts of each provincial and territorial government related to prevention of FASD and support varies across Canada. Most government websites contained varied amounts information about FASD, ranging from a lot (e.g. British Columbia, Alberta, and Saskatchewan) to a little (e.g. Nova Scotia, Prince Edward Island, Ontario, and Québec). Several sites noted a cross ministry and collaborative response to FASD and involvement in form of partnerships. It appears that governments recognize the importance of working together to address this complex issue (i.e. Canada Northwest FASD Partnership). From a cross-jurisdictional perspective, the Federal Provincial Territorial Ministers Responsible for Justice directed the establishment of a Coordinating Committee of Senior Officials (Criminal) Steering Committee on FASD in 2009 to address the area of FASD in the criminal justice system. f

Provincial approaches to diagnostics differ across the country. Alberta appears to be a leader in terms of diagnostics and maintains a specific focus on FASD. For instance British Columbia’s diagnostic team approaches FASD through a general disabilities lens, and as such FASD is not the main focus. Manitoba has a centralized model with some outreach, yet services are not always accessible locally.

Alberta has government support, which supports the action associated with implementation of their Strategic Plan. Therefore, the investment in evaluating the 10 Year Strategic Plan at Year 5 can serve to inform how other provinces and territories address this complex issue. The information would be especially useful in Manitoba, which has a 5 year FASD strategy and is currently in the process of considering their evaluation approach.

2. If so, have these models been evaluated?

From the review of websites, documents, and discussions with stakeholders, it does not appear that existing system level models have been evaluated. Some evaluations have taken place, however, they have mainly been limited to the program level. Evaluation in this area, specifically at the system level, remains

f Karen Cotton (Personal Communication November 9, 2012)

limited. Findings from the few relevant evaluation studies support the importance and necessity of collaboration to ensure a coordinated, multi-disciplinary, and cross-sectoral approach for addressing FASD. As such, the Year 5 Evaluation of the Government of Alberta’s FASD 10 Year Strategic Plan will contribute significantly towards addressing this gap.

Next steps:

A limitation noted in this report is that the focus of the scan is at the system level and was mainly restricted to what is publicly available online. Search terms yielded limited results. As such, additional information was sought through discussions with a few key stakeholders. To fully address this limitation, a comprehensive survey of provincial and territorial representatives should be undertaken with the intent to confirm and enhance these findings.

Stakeholders who were consulted in the writing of this report expressed interest at receiving the findings from this review as well as the results for the entire Year 5 Evaluation. Sharing the work done in Alberta has potential to shape the future of collaboration across Canada in addressing FASD.

Table of Contents

Outcome 5....................................................................................................................................................................................... 189Evaluation Questions 5, 5a....................................................................................................................................................... 189

Project Overview..........................................................................................................................................................................189Methodology................................................................................................................................................................................... 189Limitations...................................................................................................................................................................................... 190Findings............................................................................................................................................................................................ 190

Provinces and Territories......................................................................................................................................................... 190Strategic Plans or Strategies in Place in Canada........................................................................................................... 197

International.................................................................................................................................................................................. 198United States.................................................................................................................................................................................. 198Australia........................................................................................................................................................................................... 199Europe............................................................................................................................................................................................... 199South Africa.................................................................................................................................................................................... 200

Additional Evaluations and Related Studies....................................................................................................................200Environmental Scan....................................................................................................................................................................201References....................................................................................................................................................................................... 202

The planning and delivery of provincial government programs and services associated with FASD is accomplished through a collaborative approach.

Research Report: Outcome 5, Evaluation Question 5A

Outcome 5:

Evaluation Questions

5: Is a Cross-Ministry Committee structure effective in planning and delivering programs and services associated with FASD in a collaborative approach?

5a: How does the Service Network model compare with other models? Do other models exist for comparison? Have other models been evaluated?

Project overview

In 2012, as part of the Year 5 Evaluation of the Government of Alberta’s FASD 10 Year Strategic Plan, the Alberta Centre for Child, Family and Community Research (The Centre), commissioned an environmental scan.

This scan is part of Outcome 5 of the nine FASD 10 Year Strategic Plan outcomes.

Outcome 5 is listed as “The planning and delivery of provincial government programs and services associated with FASD is accomplished through a collaborative approach.”

The purpose of this scan is to gain a better understanding of FASD models and services being offered across Canada, and to a very limited extent internationally, to address FASD.

The scan is intended to answer the questions:

1. Do other models exist for comparison in other provinces/jurisdictions? 2. If so, have these models been evaluated?

The focus of the scan was at the system level and restricted to what is publicly available online and in discussion with a few key stakeholders.

Methodology

An environmental scan typically involves gathering and synthesizing information to provide a snapshot of current knowledge, policy, and/or practice in relation to a given topic; the scan may also yield information regarding good or promising practices and/or policies, in order to inform a blueprint for change. 2

The methods employed in completing this scan were: review of government websites, documents, and discussions with stakeholders.

Literature scan: The primary methods of data collection for this scan consisted of a review of government websites and a search for publicly available online documents using existing databases (e.g. academic search premier and Google scholar). The online search took place in the spring of 2012.

Samples of search terms used for this report: Fetal Alcohol Spectrum Disorder, FASD, FAS and; prevention, model, system, strategy, evaluation; name of province/territory.

Discussions with stakeholders: A progress report was presented on June 5, 2012 at the mid-point FASD evaluation review meeting. Further contacts, suggestions, and verification were provided by members of the FASD Cross Ministry Committee and evaluation advisory committee. A meeting with representatives from the Public Health Agency of Canada and discussion with some key stakeholders provided additional information to complete the scan.

Limitations

The focus of the scan was at the system level and was mainly restricted to what was publicly available online. This particular scope was thought to be most useful for informing the evaluation. However, the search terms used yielded limited results. As such, additional information was sought through discussions with key stakeholders (i.e. The Alberta FASD-Cross Ministry Committee; staff from the Public Health Agency of Canada). To fully address this limitation, a comprehensive survey of provincial and territorial representatives should be undertaken in the future, with the intent to confirm and enhance these findings.

Findings

Provinces and Territories

The Public Health Agency of Canada (PHAC) reports that several provinces and territories3 are focusing on FASD prevention and management. The size and scope of the services and resources that support FASD-affected persons in school, employment, assisted living, judicial, and correctional environments vary across the country.

Partnerships and collaborations have been set up in a number of provinces and territories. For example, the Canada Northwest FASD Partnership (CNFASDP) was created in western Canada (Manitoba, Saskatchewan, Alberta, and British Columbia) and the territories (Nunavut, Yukon, and Northwest Territories) in 1998 to prevent FASD and to provide support for those affected by it. CNFASDP is an intergovernmental, cross-jurisdictional alliance that shares expertise, best practices, and resources related to FASD.

The Atlantic Intergovernmental FASD Partnership and the FASD Intergovernmental Action Network for Ontario support partnerships in their respective regions. This support has led to ongoing and integrated action in setting priorities among their FASD partners.

To ensure that the FASD Initiative is consistent throughout Canada, the Health Portfolio continues to work toward building strong partnerships with the provinces and territories. From a cross-jurisdictional perspective, the Federal Provincial Territorial Ministers Responsible for Justice directed the establishment of a Coordinating Committee of Senior Officials (Criminal) Steering Committee on FASD in 2009 to address the area of FASD in the criminal justice system.g CanFASD plans to expand

g Karen Cotton (Personal Communication November-9, 2012)

nationally and work with all existing Canadian researchers, programs, organizations, families, and professionals, including existing grassroots organizations that want to collaborate on research on the complex issues surrounding FASD.4

Overall, there is great variability across Canada with respect to the nature and extent of FASD activity.1 Not surprisingly then, the amount of online information available that expresses the efforts of each provincial and territorial government related to prevention of FASD and support varies across Canada. The western provinces and territories appeared to be leading the way, with the exception of Newfoundland and Labrador, which also had several references to their intent and actions for addressing FASD.

Most government websites had some information about FASD, ranging from a lot (i.e. British Columbia and Saskatchewan) to a little (i.e. Nova Scotia, Prince Edward Island, Ontario, and Québec). Several websites noted a cross ministry response to FASD and involvement in partnerships. It appears that governments recognize the importance of working together to address this complex issue (i.e. Canada Northwest FASD Partnership).

In sum, only a small amount of information exists that focuses on the system level and a strategic approach to addressing FASD. Other reviews5 have also noted the lack of literature in this area. The following pages summarize the key findings specific to models of FASD prevention, as posted on the provincial and territorial government websites.

1. Newfoundland and Labrador

The following information from the Government of Newfoundland and Labrador website: http://www.gov.nl.ca/

There were several postings pertaining to FASD located on the Newfoundland and Labrador government website.

In 2005, the provincial Government announced $100,000 to support a FASD prevention initiative in partnership with the Labrador FASD Advisory Committee and Labrador-Grenfell Regional Integrated Health Authority. The initiative targets women of childbearing years and their support systems and focuses on increasing public awareness, prevention, and health promotion at the community level. This represents the first investment specifically targeting prevention of FASD in the province. 6

Consultations: In 2008, the provincial lead position for dealing with FASD was with the Division of Children and Youth Services. In May 2008, a Mental Health and Addictions Services’ consultation dealing with the Provincial Substance Use Strategy focused on preventing and treating problematic substance use. A number of aspects were addressed, including Health Promotion, Prevention, Education and Awareness, Enforcement, and Treatment and Harm Reduction such as the prevention of secondary effects from substance abuse.7

Conference: February 15, 2009; Media Advisory: Minister to Address Fetal Alcohol Spectrum Disorder Conference. The Honourable Felix Collins, Minister of Justice and Attorney General, gave the opening address to the FASD Conference. The two-day conference took place at the Pentecostal Tabernacle, Hamilton River Road, Happy Valley-Goose Bay. The conference was organized by the Department of Justice and included participants from the provincial government as well as community organizations.

Federal/Provincial/Territorial (FPT) Ministers Discuss Key Justice and Public Safety Issues Facing Canadians; January 27, 2012: Fetal Alcohol Spectrum Disorder (FASD) and Access to Justice

Ministers agreed that the response of the justice system to those with FASD continues to be a priority and noted the importance of prevention. Ministers directed FPT officials to continue to work together to explore how to best respond to individuals with FASD.8

2. Prince Edward Island

The following is from the Government of Prince Edward island website: http://www.gov.pe.ca/

There was little mention of FASD found after a search of the Prince Edward Island provincial government website.

Risks: Information about the harmful effects of drinking during pregnancy found at:

http://www.gov.pe.ca/hssaddiction/index.php3?number=1006647&lang=E

3. Nova Scotia

The following information is from the Government of Nova Scotia website: http://www.gov.ns.ca/

The main mention on the Nova Scotia government website pertains to their Alcohol Strategy.

FASD as a community responsibility: Nova Scotia launched Canada's first provincial alcohol strategy in 2007. The goal of the strategy is to support a cultural change so that Nova Scotians who choose to drink will do so without harming themselves, their families, or their communities.9

Alcohol Strategy: Fetal Alcohol Spectrum Disorder (FASD) focuses on priorities related to FASD with several government departments. This includes participation in the Atlantic Intergovernmental FASD Partnership.10

4. New Brunswick

The following information is from the Government of New Brunswick website: http://www2.gnb.ca/

The main FASD topic found on the government of New Brunswick’s website pertained to the announcement of a specialized center.

A Specialized Centre: The New Brunswick Government and Family Service Moncton Inc. are creating a specialized centre to deal with FASD in Moncton. The provincial government and the two regional health authorities will work with Family Service Moncton on the new initiative.

The provincial government selected the non-governmental organization after releasing a request for proposals. Family Service Moncton will be in charge of building the infrastructure to support the co-ordination and service delivery related to FASD prevention, diagnosis, and intervention. The contract is worth $500,000 annually over five years. The Horizon Health Network and Vitalité will offer the required specialized clinical services and expertise for the centre.11

The new Moncton-based centre will:11

Create a bilingual team that can address the prevention, diagnosis, and intervention of FASD. Establish a network of regionally-based community officials to help individuals and caregivers of

people impacted by FASD. Develop a First Nations component to ensure services to First Nations are culturally appropriate.

5. Québec

The following information from the Government of Quebec website:

http://www.gouv.qc.ca/portail/quebec/pgs/commun/?lang=en

At the time of the review, there was no mention of FASD found after a search of the Québec provincial government website directly. However, an internet search revealed that the Institut National de Santé Publique du Québec released a Status Report on FASD in Québec in 2004, noting at that time that the issue of FASD seemed to be a concern to “just a few researchers, parents, health care, and social services professionals.” 12(p. 38)

Québec does not have an FASD model; rather, the province approaches diagnostics through a general disabilities lens.h

6. Ontario

The following information is from the Government of Ontario website: http://www.ontario.ca/

Limited mention of FASD was found after a search of the Ontario provincial government website.

An example of an early identification and prevention program designed to reduce risk and to enhance the development for substance-exposed children is the “Breaking the Cycle” program. The “Breaking the Cycle” program is based in Ontario and serves parents and children together, and offers services such as addiction counseling, parenting programs, child development services, medical services, and an FASD clinic, largely through street outreach programs. More information about Breaking the Cycle can be found at http://www.mothercraft.ca/index.php?q=breaking-the-cycle

In terms of prevention, “Motherisk” is a model where women and their healthcare practitioners wanting to learn more about the risk or safety of prescription and over-the-counter drugs, herbal products, chemicals, x-rays, chronic disease, and infections during pregnancy and while nursing can contact the Motherisk program at the Hospital for Sick Children (SickKids), affiliated with the University of Toronto.13

In a study by Clarke-McMullen,14 the findings state that leading a successful coalition that benefits both the members and the community is a difficult task. Coalitions are complex and require a great deal of skill to initiate, lead, and evaluate. This study examined a successful coalition in Ontario, developed to build community capacity to address FASD.

The main findings from the study are:14

h G. Andrews (personal communication, July 25, 2012)

Prevention of FASD requires multiple strategies involving multi-disciplinary and cross sector collaboration.

Prevention is an on-going effort; and requires a mandate. Coalitions can be effective in tackling these types of issues and fit with community capacity-building

approaches to health promotion.

7. Manitoba

The following information is from the Government of Manitoba website: http://www.gov.mb.ca/

FASD Strategy: In April 2007, the Government of Manitoba announced a coordinated FASD strategy developed by an interdepartmental committee in consultation with experts and community stakeholders. The strategy builds upon existing multi-departmental, multi-million dollar prevention activities and service supports available for individuals with FASD throughout the lifespan. The strategy also supports the work of the Changes for Children initiative, designed to enhance the child welfare system. An interdepartmental committee with representation from Healthy Child Manitoba Office, Health, Healthy Living, Youth and Seniors, Family Services and Consumer Affairs, Housing and Community Development, Education, Justice, Aboriginal and Northern Affairs, and the Changes for Children Child and Family Services initiative has responsibility for implementing the strategy, with input from community partners.15

The government of Manitoba is exploring how you go about evaluating a strategy at a systems level. The government is working with the Manitoba Centre for Health Policy to establish a common set of key data elements across programs.

FASD Screening: Data on alcohol use during pregnancy is routinely collected in Manitoba from women who have recently given birth. This information is important for understanding general trends and patterns of alcohol use during pregnancy and is used to inform policy and programming decisions.16

Stop FASD Program, Winnipeg: This three-year intensive home visit program is designed for high-risk women to access support. The Stop FASD Program has been renamed “InSight Mentoring.” InSight Mentoring is an outreach program where mentors provide intensive support to women who are pregnant or have recently given birth and have substance use problems. This is a voluntary program for women who aren’t well connected to community support services.17 The Government of Manitoba collects and reviews client outcomes on a yearly basis.i Additional information can be found at http://www.gov.mb.ca/healthychild/fasd/insight.html.

A partnership with the Manitoba Liquor Control Commission (MLCC) provides findings from a broad-based survey of attitudes around alcohol use during pregnancy, and the results help to inform public awareness campaigns. See "Be With Child Without Alcohol”18 website for more information on the MLCC’s “Be With Child Without Alcohol” campaign.

i H. Gammon (personal communication, July 27, 2012)

8. Saskatchewan

The following information is from the Government of Saskatchewan website: http://www.health.gov.sk.ca/fasd

The Saskatchewan Government’s Department of Health is involved with a number of initiatives related to FASD both in the province, as well as through an inter-provincial/territorial partnership.

The Saskatchewan Prevention Institute, a non-profit organization, co-ordinates and administers a provincial FASD Prevention Program which is funded by the provincial ministries of Health and Social Services. Initiatives include: raising public awareness and providing education across the province; developing and distributing resources and information; providing provincial co-ordination; and supporting communities in their efforts to address FASD.

Cognitive Disabilities Strategy Cross-Ministerial Working Group: This committee is a cross-ministry policy forum to support an integrated approach to meeting the needs of, and improving outcomes for, people with disabilities and their families. The strategy takes into account the impact a disability has on individuals and families. Cognitive disabilities include FASD, Autism Spectrum Disorders and acquired brain injury. The committee is chaired by the Ministry of Health, with representation from these ministries: Social Services; Education; Corrections, Public Safety and Policing; Justice and Attorney General; Advanced Education, Employment and Labour; Office of Disability Issues.

Canada Northwest FASD Partnership: Saskatchewan participates on this partnership along with Alberta, British Columbia, Manitoba, Northwest Territories, Nunavut Territory and Yukon Territory. Through this initiative, the provincial/territorial partners are able to learn from one another, share expertise and resources. Joint conferences and symposiums are also held.

Note: The Saskatchewan provincial government appeared to be the most comprehensive and easy to navigate in terms of presenting supports and services for FASD.

9. Alberta

The following information is presented from the Government of Alberta website: http://www.fasd-cmc.alberta.ca/home/

Alberta is a member of the Canada Northwest FASD Partnership.

Cross-Ministry Committee: Through the Alberta FASD Cross-Ministry Committee, Human Services and Health work in partnership with provincial and federal government ministries, community organizations, professionals, and other stakeholders in developing and supporting services for people affected by FASD and their caregivers.

Investments: The Government of Alberta has invested nearly $37 million since 2007 for FASD programs and services. These funds support FASD-related initiatives across Alberta, including awareness and prevention, assessment and diagnosis, support for individuals and caregivers, research and evaluation, education and training, and stakeholder engagement.

Plan: A unique made-in-Alberta plan on FASD focuses on developing and delivering community-led and community based solutions through the FASD Service Network Program, making it easier for those affected by FASD across the lifespan to get the help they need, at any point during their lives.

10. British Columbia

The following information is from the Government of British Columbia website: http://www2.gov.bc.ca/

The Government of British Columbia had several items related to FASD on their website.

Investments: In 2006, a $10-million FASD Action Fund was established through the Victoria Foundation to promote prevention, public education, and parent and caregiver education, as well as fund demonstration projects focused on improving outcomes for children and youth with FASD through peer support, social and life-skills development, and school-based initiatives. To date, more than 40 projects from around the province have received funding. A description of those projects is available on the Victoria Foundation website:www.victoriafoundation.bc.ca/web/

10 Year Plan: “FASD: Building on Strengths A Provincial Plan for British Columbia 2008 - 2018.” Building on Strengths highlights accomplishments since the release of BC's first FASD Strategic Plan in 2003 and provides a framework to guide provincial, regional, and community efforts to address FASD over the next decade.19 Under the plan, services are available to assist families of children and youth with FASD and similar conditions. The Key Worker and Parent Program Standards can be found on the Government of British Columbia website.20

Related Evaluations:

British Columbia’s Key Worker Program Evaluation: The Ministry of Children and Family Development's Key Worker and Parent Support program was reviewed through a three-year external evaluation process. This program was introduced throughout the province in 2005/06. The program’s overall goal is to maintain and enhance the stability of families with children or youth with FASD and/or similar complex developmental-behavioural conditions in order to improve the children’s long term outcomes.

Evaluation reports and executive summaries from 2006 to 2009 are available in PDF format on the Government of British Columbia’s website.21 See Appendix A for a list of promising practices noted in the evaluations.

11. Nunavut

The following information is from the Government of Nunavut website: http://www.gov.nu.ca/

Nunavut’s FASD Initiative funds programs and activities that promote awareness and prevention of FASD, as well as intervention strategies to help children and families living with FASD. Programs and activities must:22

Support pregnant women in making healthy choices for themselves and their babies. Support people born with FASD. Raise community awareness about the effects of FASD.

Previously funded programs and events include:22

Celebrating Pregnancy: Pin and Certificate Program Inuit Traditional Culture Project The Early Intervention Program The Nearest and Dearest Program The Suputiit and Qiturnagaksaqattiarniq Programs for Teen Mothers Inutsipagutit (Cherishing Life) Project People Helping People Mentoring Program International FASD Day

Children and families from Nunavut may access services in Alberta at the Glenrose Rehabilitation Hospital.

12. Yukon

Limited information about FASD was found on the Yukon government website at http://www.gov.yk.ca/

13. Northwest Territories

The following information is from the Government of Northwest Territories (GNWT) website: www.gov.nt.ca

The GNWT and the Department of Health and Social Services have identified FASD to be a focus within the priorities of Prevention Services and Child and Family Services. FASD is a priority of Prevention Services because it is a life-long disability that is entirely preventable. FASD is a priority of Child and Family Services because of the increased knowledge of early brain development. Research findings provide a strong foundation for the refocusing of policy and investments on the early years of a child’s development. Taken from: http://www.hlthss.gov.nt.ca/english/services/fetal_alcohol_spectrum_disorder/gnwt_focus_on_fasd.htm

Appendix B illustrates the GNWT’s integrated response to FASD, which is a useful visual to consider reproducing for Alberta, to show the partnership as well as programs and services available through the life stages.

Strategic Plans or Strategies in Place in Canada

Of the 12 provinces and territories, only three have an FASD Strategic Plan in place: Alberta, British Columbia, and Manitoba. Appendix C includes a full list of the provinces/territories, their strategic plans, as well as additional information.

Eastern provinces are banding together to maximize resources through non-delegated working groups. Western provinces and territories are members of the Canada Northwest FASD Partnership – an alliance of the four western provinces and three territories that share expertise and resources in FASD prevention, diagnosis and support, and the advancement of research. The Partnership established an FASD Research Network to enhance opportunities for collaboration and networking amongst FASD researchers working in the fields of prevention, diagnosis, support, and intervention. The goal is to enhance high quality, multi-site research studies, thereby increasing opportunities to attract large national and international research grants. The resulting research will inform policy, practice, prevention, intervention, and support initiatives.

International

United States

FASD Center for Excellence

Website: http://www.fascenter.samhsa.gov/index.cfm

The Substance Abuse and Mental Health Services Administration (SAMHSA) FASD Center for Excellence is a federally funded initiative devoted to preventing and addressing FASD. The SAMHSA FASD Center for Excellence has joined the National Institute on Alcohol Abuse and Alcoholism, the Centers for Disease Control and Prevention, and others in adopting the term Fetal Alcohol Spectrum Disorders to describe the wide range of problems that can develop when a fetus is exposed to alcohol in the womb. The SAMHSA FASD Center for Excellence provides resources and information on FASD to expand the knowledge base and promote best practices in both FASD prevention and treatment.

The SAMHSA FASD Center for Excellence was launched in 2001 and was authorized by congress in Section 519D of the Children's Health Act of 2000 which included six mandates (Section b of 42 USC 290bb-25d or Public Law 106-310). The mandates focus on exploring innovative service delivery strategies, developing comprehensive systems of care for FASD prevention and treatment, training service system staff, families, and individuals with an FASD, and preventing alcohol use among women of childbearing age.

The mission of the SAMHSA FASD Center for Excellence is to facilitate the development and improvement of prevention, treatment, and care systems in the United States by providing national leadership and facilitating collaboration in the field.

Goals:23

1. Reduce the number of infants born prenatally exposed to alcohol.

2. Increase functioning of persons who have an FASD.

3. Improve quality of life for individuals and families affected by FASD.

One of the resources the SAMHSA FASD Center for Excellence offers is the FASD Legislation Report, a bi-annual review of legislation related to FASD. This latest report updates the April 2011 report and includes legislation introduced, updated, or passed between 2003 and October 2011. During that time, the SAMHSA FASD Center for Excellence has identified 280 FASD-related bills, distributed across 44 States.23

Notable Trends from April 2011 to October 2011:

• There were 31 bills introduced across 22 States.

• Of the 31 bills introduced, 5 bills passed.

• One State (Alabama) introduced legislation for the first time since 2003.

• Similar to prior years, legislative action focused on prevention.

• In 2011, 56 bills were introduced; more than twice the number that were introduced in 2010. However, only a small fraction was actually passed.

National Association of FASD State Coordinators24

To support state-based efforts, the SAMHSA FASD Center for Excellence helped establish the National Association of FASD State Coordinators (NAFSC) in 2003.24 NAFSC’s mission is to promote prevention, treatment, and care systems for FASD, nationwide, through collaboration with systems within their respective states and among member states.24 The group meets quarterly with three teleconferences and one face-to-face meeting a year, and seeks to:

Provide information, resources, and support to individuals involved in FASD efforts at the state level Identify and share models for FASD prevention and treatment Establish and maintain a national identity for FASD Advocate for all states to have a designated FASD Coordinator Educate families, providers, researchers, and policymakers on FASD Establish partnerships on a national and grassroots level24

Twenty-seven states, the District of Columbia, and Navajo Nation have officially designated FASD Coordinators.

Australia

NOFASARD (The National Organization for Fetal Alcohol Syndrome and Related Disorders) is the peak national, non-government organization representing the interests of parents, caregivers, and others interested in or affected by FASD.

Through education, training, and advocacy, NOFASARD aims to prevent FASD and improve the lives of children/adults living with FASD and the families who support them. NOFASARD delivers support to families living with FASD, education, and training workshops for both government and non-government agencies throughout Australia.

Australian Guidelines to Reduce Health Risks from Drinking Alcohol: http://www.nhmrc.gov.au/your-health/alcohol-guidelines

Fetal Alcohol Spectrum Disorder Model of Care: http://www.healthnetworks.health.wa.gov.au/modelsofcare/docs/FASD_Model_of_Care.pdf

Europe

Website: http://www.eufasd.org/

The European FASD Alliance was founded in February 2011 to meet the growing need for European professionals and NGOs concerned with FASD to share ideas and work together. The European FASD Alliance is a non-profit international organization registered in Sweden.

Goals: To improve the quality of life for all people with FASD and their families. To increase awareness of the risks of drinking alcoholic beverages during pregnancy. To support the member associations in their efforts.

The European FASD Alliance will also act as a liaison centre: To collate and disseminate information to its members. To stimulate international collaboration on research projects on the origins, management, and

prevention of FASD. To encourage national associations to exchange and share their projects and experiences. To foster the foundation and development of new national FASD associations.

South Africa

Following information is taken from:http://www.cdc.gov/ncbddd/fasd/pastactivities-international.html25

Fetal Alcohol Syndrome Surveillance and Prevention Project - Republic of South Africa

Much of this work is informed by FASD experts Dr. Philip May and Dr. Edward Riley of the U.S.

FAS is a major public health problem in South Africa. Some of the highest rates of FAS in the world come from studies conducted among school children in South African communities. Identifying children with prenatal alcohol exposure is one of the many challenges in South Africa. However, providing services to children once they are diagnosed and developing prevention and treatment strategies for women are also critical.

CDC and the Foundation for Alcohol Related Research, in collaboration with the National Health Laboratory Services and the University of Witwatersrand (Johannesburg), worked together to build capacity in case finding and surveillance, epidemiology, data management and analysis, and FAS prevention in South Africa. The purposes of this cooperative agreement were to:

Develop ongoing surveillance for FAS Estimate the prevalence of FAS in South African provinces Investigate, implement, and evaluate prevention strategies Complete needs assessments detailing the availability and gaps in alcohol prevention and treatment

services for women and intervention services for children Develop local epidemiology capacity through training of key study staff

Additional Evaluations and Related Studies

See Appendix D for information about the Public Health Agency of Canada’s Summative Evaluation: Fetal Alcohol Spectrum Disorder Initiative (2004-2009). The main finding from the evaluation was that the federal FASD Initiative should continue, as FASD remains an issue of national concern and the Initiative continues to serve the public interest.1

See Appendix E for article abstracts that provide example of prevention efforts taking place in the United States.

Environmental Scan

The information in this section is taken directly from the National Aboriginal Health Organization report Fetal Alcohol Spectrum Disorder: An Environmental Scan of Services and Gaps in Inuit Communities.27

In total, 36 contacts responded with a completed survey – a response rate of 82 per cent.Findings:

Activities and programs related to prevention, support, and raising awareness of FASD vary greatly across the four Inuit regions.

Gaps in addressing Inuit-specific FASD issues

Respondents were asked to identify gaps in addressing Inuit-specific FASD issues, programs, and services.

Nationally, the need for diagnoses, services and programs were identified as gaps. Diagnosis, or lack of access to diagnostic procedures, was mentioned in all Inuit regions as a gap.

A lack of awareness (“there needs to be more people talking about FASD”) was identified in all regions.

Many of the barriers identified in addressing FASD in the Arctic are ones that cut across many social issues, including: staff turnover in both health and education; the costs of travel and translation; the lack of funds to attend FASD-related events in the south; the need to build capacity (including more specialists, school counselors, social workers, training for frontline workers) as many activities are volunteer-based; the lack of infrastructure; and the inequitable distribution of funding based on inadequate funding formulas.There is a need for more research with culturally appropriate methods.

A number of themes emerged from the data collected, including: A lack of funding and human resources; A need for Inuit-specific research; and A need to raise awareness and address issues around stigmatization.

The two major gaps in FASD services are a lack of co-ordination at all levels, and funding for training, service provision, prevention, and counseling. A national Inuit-specific strategy to address prevention and promotion, and to help individuals affected by FASD, is necessary to fill the co-ordination gap. However, the strategy must reflect the regional differences in levels of activity and be flexible to accommodate regional/community priorities and perspectives on FASD.

References

Outcome 5:The planning and delivery of provincial government programs and services associated with FASD is accomplished through a collaborative approach.

Evaluation Question 5b:Development of an evaluation framework to assess the extent to which the 12 FASD Service Networks might be collaborating with community agencies to plan and deliver programs and services

Prepared by:

Cheryl PothJacqueline PeiKelli Palfy Allison Foskett

Executive Summary

The planning and delivery of provincial government programs and services associated with FASD is accomplished through a collaborative approach.

Evaluation Question 5b:

Development of an evaluation framework to assess the extent to which the 12 FASD Service Networks might be collaborating with community agencies to plan and deliver programs and services

Data Sources:

Major source(s): Consultation with key contact for this project (i.e., Dr. Jacqueline Pei)Complimentary source(s): FASD 10 Year Strategic Plan document review and a literature review

Findings:

1. This proposed evaluation framework can be updated in order to align with current outcomes, and it provides the beginnings of an evaluation tool that can act as a consistent and continuous way to measure collaboration within and between the FASD-CMC, the 12 FASD Service Networks, and other community services and agencies.

2. There are four different data sources proposed as methods of data collection, which provides a variety of ways to triangulate the data for reliability.

Recommendations:1. In order to conduct a survey/questionnaire for question 1, it is recommended that data be collected

by using a pre-existing collaboration model as mentioned above (e.g., either the Community Collaboration Assessment Tool or the Partnership Assessment Tool). To ensure scientific rigor of the chosen collaboration model, it is suggested that a small pilot study be undertaken to verify the reliability and validity of the survey/questionnaire.

2. This evaluation framework and collaboration model may be applied to measuring collaboration between other units involved in the FASD projects. For instance, collaboration could be measured between the FASD-CMC and the Service Networks, between the Network Coordinators themselves, and between the agencies as well. Each measurement may yield findings that can be supportive and useful to the other dyads.

3. It is also recommended that an information database be implemented to collect data on various aspects of attaining a seamless service delivery, descriptive statistics, client satisfaction, meeting attendance and topics discussed, training, and so forth. A focus group facilitated by an external evaluator or neutral party to brainstorm what information is most important to capture would be a valuable endeavor.

4. Consider creating a collaboration guide that outlines expectations for how Network Coordinators and agencies will collaborate. Having standards and guidelines will keep individuals accountable to

each other. In addition, these guidelines could include how to resolve conflicts, how to negotiate shared understandings and meanings, and basic communication skills imperative to collaboration.

Table of Contents

Outcome 5:...................................................................................................................................................................................... 208Evaluation Questions 5, 5b....................................................................................................................................................... 208

Introduction................................................................................................................................................................................... 208Method.............................................................................................................................................................................................. 208

Data sources................................................................................................................................................................................... 208Findings: Proposed Evaluation Framework.....................................................................................................................208Data Collection.............................................................................................................................................................................. 212Data Analysis..................................................................................................................................................................................212Reporting......................................................................................................................................................................................... 212Summary.......................................................................................................................................................................................... 213Recommendations.......................................................................................................................................................................213Considerations for 7 year evaluation..................................................................................................................................213References....................................................................................................................................................................................... 214

The planning and delivery of provincial government programs and services associated with FASD is accomplished through a collaborative approach.

Research Report: Outcome 5, Evaluation Question 5b

Outcome 5:

Evaluation Questions

5: Is a Cross-Ministry Committee structure effective in planning and delivering programs and services associated with FASD in a collaborative approach?

5b: Development of an evaluation framework to assess the extent to which the 12 FASD Service Networks might be collaborating with community agencies to plan and deliver programs and services.

Introduction

It is important to note that this framework was developed in December 2011, and so as a way of moving forward the purpose needs to be re-reviewed so that it better aligns with the current outcomes. The initial purpose of this framework is formative in that it will focus on addressing the current status of a particular element of the Government of Alberta’s 10 Year Strategic Plan, with the intent to capture ways in which the program can be improved. The specific purpose of this evaluation framework proposal, then, was to propose an evaluation framework that can be used to assess the extent to which collaboration is occurring within and between the FASD Service Networks, the FASD-CMC, and other community agencies, services, and programs. The evaluation approach chosen was a utilization-focused evaluation approach (UFE), which focuses on ensuring that the findings of the evaluation will be of practical use to those participating in the evaluation.1

Method

The Alberta Clinical and Community-based Evaluation Research Team (ACCERT) was formed to address Evaluation Questions 2a, 5b, c, and d, and 6 a, b, c, d, and e from Outcomes 2, 5, and 6. It is important to note that the Methods section for this outcome (Outcome 5, Question 5b) can be found in Appendix A of Outcome 2, Question 2a.

Data sources

Major source(s): Consultation with key contact for this project (i.e., Dr. Jacqueline Pei)

Complimentary source(s): FASD 10 Year Strategic Plan document review and a literature review

Findings: Proposed Evaluation Framework

PURPOSE OF THE PROPOSED EVALUATION FRAMEWORK

The following evaluation framework is being proposed to inform Outcome 5b, which addresses the extent to which the planning and delivery of provincial government programs and services associated with FASD is accomplished through a collaborative approach. Collaboration has been defined as the “process for setting

collective priorities, and incorporating different perspectives. This is reflected in the way people commit to working together to meet their shared goals. It allows for the blending of perspectives, expertise, resources and shared accountability and responsibility.” 2(p.2 )

GROUPS INVOLVED AND THE LOGIC MODEL

The primary groups participating in the proposed evaluation framework are the FASD-CMC and the 12 FASD Service Networks. Both the FASD-CMC and the 12 FASD Service Networks are serving the FASD-affected population in two ways including: 1) providing services to children, youth, and adults with FASD, suspected to have FASD, or considered to be at risk for FASD, and 2) providing informal support for people with FASD and other communities of individuals who may not be at risk but might benefit from raising awareness and education around prevention and the causes of FASD.

A Logic Model was created as a visual representation of the process that would unfold if the proposed framework was used to evaluate the extent to which the planning and delivery of provincial government programs and services associated with FASD is accomplished through a collaborative approach. The proposed logic model outlines the organization of the evaluation framework, including the proposed inputs (i.e., the people involved), activities involved, short-term outputs and the long-term outputs that, if the activities are accomplished, will provide evidence of service delivery impact on clients, and lastly the outcomes, which represent the positive changes in the future if the activities and outputs are successfully accomplished. The logic model for the proposed evaluation framework can be found in Figure 3 below.

Figure 3. Logic Model

EVALUATION PLAN

The next step of this proposal is to outline the evaluation plan. The proposed evaluation is centered on addressing collaboration between two groups (i.e., the FASD Service Networks and community agencies) and is asking the key question: How are the 12 FASD Service Networks collaborating with community agencies to plan and deliver provincial government programs and services? It is important to note that for the purpose of this proposal, two groups were chosen to demonstrate the evaluation framework; however, collaboration between other groups can, and should, also be examined using the same framework.

Three enabling questions were developed to answer the key question of how the 12 FASD Service Networks are collaborating with community agencies to plan and deliver provincial government programs and services. These three enabling questions include:

1. What evidence is there of collaboration between the 12 Network Coordinators and their agencies? 2. To what extent are the meetings reflective of the collaborative process?3. How is accountability facilitated?

See Table 1 below to view the evaluation plan in full. Appropriate methods of data collection and data analysis were chosen and suggested based on the enabling questions.

Table 1. Evaluation Plan

Enabling Questions Information Sought InformationSourceWho?

Method of Data CollectionHow?

Analysis Ideas

1. What evidence is there of collaboration between the 12 Network Coordinators and the agencies?

a) What impact and difference is the collaboration having? b) From your observations, are client needs being met? c) To what extent is there a seamless service delivery?

12 Coordinators (1 from each Network) and a sample of 5 agency representatives from each region.

Survey Descriptive statistics

2. To what extent are the meetings reflective of the collaborative process?

a) Are there gaps identified and addressed? b) Are additional resources necessary to address gaps identified?

Focus group Inductive thematic analysis

3. How is accountability facilitated?

a) How do they make decisions? b) How do they establish priorities? c) How do they establish shared meaning?

Observation / review of quarterly meetings and minutes, policies and funding formula. A focus group.

Inductive

thematic analysis

Data Collection

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Four sources of data were proposed for this evaluation: surveys, focus groups, observations, and document reviews.

1. Surveys -Surveys were chosen as a method of data collection because they incorporate a variety of questions utilizing scales, open-ended, and forced choice responses that allow participants to expand on their answers to some questions and give explicit answers to other questions. The surveys would be efficiently administered using Survey Monkey, and sent via email to participants randomly selected by the evaluator. In addition, existing tools of measurement were suggested as a way to measure collaboration consistently over different groups and time periods. Two different tools are suggested to measure collaboration: the Partnership Self-Assessment Tool and the Community Collaboration Assessment Tool-C. Survey questions will be composed based on one or both of the tools for measuring of collaboration suggested above.

2. Focus groups – Focus groups were chosen as the second method of data collection for informing question 2, as they involve open-ended questions that may have complex meanings to be negotiated between the coordinators.

3. Observations - Observation was also chosen to collect data for question 3. An observer would be placed in the focus group meeting, and perhaps other Service Networks’ meetings as well. The observer should make field notes on their observations and utilize these notes to ensure the context of data obtained is maintained.

4. Document review - Reviews of quarterly meetings and minutes, policies, and funding formulas, and focus groups were chosen to collect data for enabling question 3.

Data Analysis

The primary forms of data analysis for this evaluation will be descriptive statistical analysis for the survey data, and Braun and Clark’s3 Thematic Analysis for the focus group and observation data. Thematic Analysis has six phases of analysis and offers a useful and flexible way of analyzing qualitative data. In short, Thematic Analysis is a way of identifying patterns and searching for themes.

Reporting

The findings will be reported back to the Government of Alberta funding agent, the FASD-CMC, the program coordinators of the FASD Service Networks, service agencies, and all stakeholders. Given that this is a formative evaluation with a utilization-focused approach, all stakeholders will be informed of the findings for implications on how collaboration can be improved. In addition, the government will be able to more readily assess its willingness to fund this component of the strategic plan. Finally, all findings will be summarized and highlighted on the FASD-CMC website and selected pieces will be reviewed and edited for publication. See Appendix A for the evaluation framework document and Appendix B for the evaluation framework poster, which visually represents the framework and may be useful for further discussion.

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Summary

This proposed evaluation framework can be updated in order to align with current outcomes, and it provides the beginnings of an evaluation tool that can act as a consistent and continuous way to measure collaboration within and between the FASD-CMC, the 12 FASD Service Networks, and other community services and agencies.

There are four different data sources proposed as methods of data collection, which provides a variety of ways to triangulate the data for reliability.

Recommendations

In order to conduct a survey/questionnaire for question 1, it is recommended that data be collected by using a pre-existing collaboration model as mentioned above (e.g., either the Community Collaboration Assessment Tool or the Partnership Assessment Tool). To ensure scientific rigor of the chosen collaboration model, it is suggested that a small pilot study be undertaken to verify the reliability and validity of the survey/questionnaire.

This evaluation framework and collaboration model may be applied to measuring collaboration between other units involved in the FASD projects. For instance, collaboration could be measured between the FASD-CMC and the Networks, between the Network coordinators themselves, and between the agencies as well. Each measurement may yield findings that can be supportive and useful to the other dyads.

It is also recommended that an information database be implemented to collect data on various aspects of attaining a seamless service delivery, descriptive statistics, client satisfaction, meeting attendance and topics discussed, training, and so forth. A focus group facilitated by an external evaluator or neutral party to brainstorm what information is most important to capture would be a valuable endeavor.

Consider creating a collaboration guide that outlines expectations for how Network coordinators and agencies will collaborate. Having standards and guidelines will keep individuals accountable to each other. In addition, these guidelines could include how to resolve conflicts, how to negotiate shared understandings and meanings, and basic communication skills imperative to collaboration.

Considerations for 7 year evaluation

Use this proposed evaluation framework as a starting point, and work to develop it into something that can be utilized in the evaluation for Year 7.

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References

1. Patton MQ. Utilization Focused Evaluation (U-FE) Checklists Projects. 2002; www.wmich.edu/evalctr/checklists. Accessed November 19, 2011.

2. Government of Alberta. FASD 10 Year Strategic Plan, 2008.3. Braun V, Clark V. Using thematic analysis in psychology. Qualitative Research in Psychology. 2006;3:77-101.

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Outcome 5:The planning and delivery of provincial government programs and services associated with FASD is accomplished through a collaborative approach.

Evaluation Question 5c:What is the history of the FASD-CMC? How was it established? How has it evolved? What collaborations enable it and support its existence?

Prepared By:Cheryl PothJacqueline Pei ACCERT Evaluation Team Members:David St. Arnault, Jenelle Job, Ellis Chan, Wence Leung, Sukhpreet Tamana, Kendra McCallum, Laura Gould, Virginia Tze, Katy Wyper, and Erin Atkinson.

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Executive Summary

The planning and delivery of provincial government programs and services associated with FASD is accomplished through a collaborative approach.

Evaluation Question 5c:

What is the history of the FASD-CMC? How was it established? How has it evolved? What collaborations enable it and support its existence?

Data Sources:

Major source(s): FASD-CMC Interviews

Complementary source(s): FASD book chapter entitled “A cross-ministry approach to FASD across the lifespan in Alberta” from the book Fetal Alcohol Spectrum Disorder: Management and Policy Perspectives of FASD.

Findings:

1. FASD-CMC has established an innovative grass roots informed cross-ministry governance structure.

2. The involvement of community, academic, and government stakeholders was established by the Alberta Partnership on FAS and has expanded with the FASD-CMC.

3. The establishment of an extensive and long-term partnership between numerous provincial ministries.

4. FASD-CMC has created a province-wide, evidence-based, coordinated response to FASD.

Recommendations:

It would be advantageous for the FASD-CMC to identify and assign a group to conduct further interviews and to expand the current timeline. The FASD-CMC is one of the first initiatives of its kind and it is imperative to document valuable information from current and past stakeholders that describe the development of the program.

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Table of Contents

Outcome 5:.............................................................................................................................................................................. 218Evaluation Questions 5c.................................................................................................................................................... 218

Method...................................................................................................................................................................................... 218Data sources........................................................................................................................................................................... 218Introduction........................................................................................................................................................................... 218The Five Phases.....................................................................................................................................................................218

1) Inception............................................................................................................................................................................. 2182) Conception......................................................................................................................................................................... 2193) Re-conceptualization.................................................................................................................................................... 2214) Elaborations..................................................................................................................................................................... 2215) Reflection........................................................................................................................................................................... 222

Conclusion...............................................................................................................................................................................222Summary.................................................................................................................................................................................. 225Recommendations...............................................................................................................................................................225References............................................................................................................................................................................... 226

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The planning and delivery of provincial government programs and services associated with FASD is accomplished through a collaborative approach.

Research Report: Outcome 5, Evaluation Question 5C

Outcome 5:

Evaluation Questions

5: Is a Cross-Ministry Committee structure effective in planning and delivering programs and services associated with FASD in a collaborative approach?

5c: What is the history of the FASD-CMC? How was it established? How has it evolved? What collaborations enable it and support its existence?

Method

The Alberta Clinical and Community-based Evaluation Research Team (ACCERT) was formed to address Evaluation Questions 2a, 5b, c, and d, and 6 a, b, c, d, and e from Outcomes 2, 5, and 6. It is important to note that the Methods section for this outcome (Outcome 5, Question 5c) can be found in Appendix A of Outcome 2, Question 2a.

Data sources

Major source(s): FASD-CMC Interviews

Complementary source(s): FASD book chapter entitled “A cross-ministry approach to FASD across the lifespan in Alberta” from the book Fetal Alcohol Spectrum Disorder: Management and Policy Perspectives of FASD.

Introduction

As the development of this timeline unfolded, it became apparent that there were five defined phases that contributed to the development of the current FASD-CMC (see Figure 4 for timeline of FASD initiatives in Alberta). The five phases have been identified as: inception, conception, re-conceptualization, elaboration, and reflection (ICRER). The ICRER model provides insight into the impact stakeholders have had during the various phases, and how this impact has influenced the development of the FASD-CMC. Each phase will be explained further and examples will be provided.

The Five Phases

1) Inception

The first phase, inception, contributed to the overall development of the FASD-CMC. Inception is defined as “the establishment or starting point of an institution or activity.”1 During the inception phase, service providers working in the area of child protection began to identify children suspected of having an FASD in many of their challenging cases. Service providers began initiating conversations

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around FASD but at this point there lacked the presence of a formal central coordinating body. The need to provide support to practitioners around FASD was also identified by agencies providing child and youth services.

In the early 1990’s, the Ministry of Children and Youth Services began supporting the training of social workers, casework supervisors, and support agencies through Workforce Development. Child Protection played a key role in being the first to report and examine children for FASD. Finally, in the mid-1990s, Alberta Government departments and social service agencies began looking for information on the prevalence of alcohol-related birth defects. Overall, the inception phase was characterized by increasing awareness of FASD and the need for specialized supports and services for service providers, individuals diagnosed with or a suspected of having FASD, and their caregivers.

2) Conception

The second phase, conception, involved the strategic decisions made by community stakeholders as well as the Government of Alberta to formalize cross-sectoral partnerships, which would later evolve into the FASD-CMC. The definition of conception is “the forming or devising of a plan or idea.” 1 By the mid-1990s, social service agencies and provincial government departments began to collaborate on FASD prevention strategies and support persons affected or suspected of being affected by FASD. As a result of the increased cross-sectoral collaboration, the late 1990s saw a variety of initiatives and committees formed to focus on FASD in Alberta and Western Canada. Two key formal partnerships were born in 1998: The Alberta Partnership on Fetal Alcohol Syndrome and the Prairie Province Fetal Alcohol Syndrome Partnership of Alberta, Saskatchewan, and Manitoba.

Government officials recognized the need for a coordinated interprovincial approach to address the societal impact of FASD. They consequently established the Prairie Province Fetal Alcohol Syndrome Partnership of Alberta, Saskatchewan, and Manitoba. It is important to note that Ministerial leadership and Deputy support for the establishment of this Prairie Provincial Partnership was key and was initiated and lead by Alberta Family and Social Services department. This partnership worked towards an interprovincial approach to FASD prevention and support for individuals affected by FASD. The partnership facilitated the sharing of FASD research, best practice, resources, and materials. Annual conferences, rotating between provinces and organized by the partnership, brought together FASD experts, government members, and community stakeholders from across the provinces. By 2001, this interprovincial partnership had expanded to include Yukon, Northwest Territories, Nunavut, and British Columbia and is currently called the Canada Northwest FASD Partnership.

Soon after the Prairie Province Fetal Alcohol Syndrome Partnership of Alberta, Saskatchewan, and Manitoba was established, the Alberta partnership on Fetal Alcohol Syndrome (FAS) was formally initiated. It was one of the most extensive partnerships of its time. The primary goals of the partnership were to improve coordination of FASD-related initiatives, including staff training, prevention, and promising practices across community and government. With 18-21 representatives at the table in 1999, the partnership involved community stakeholders (i.e., caregivers of individuals with FASD), two FASD content experts, and multiple government departments, including: Alberta Drug and Alcohol

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Commission (AADAC), the Alberta Medical Association (AMA), the Alberta Association for Community Living, the Nechi Training, Research and Health Promotions Institute (representing Aboriginal persons), Regional FAS Coordinating Committees (now called FASD Service Networks), Alberta Children’s Services, Alberta Justice, Alberta Learning, Alberta Health and Wellness, Child and Family Services Authorities, Regional Health Authorities, the Alberta Mental Health Board, and Persons with Developmental Disabilities Provincial Board.

While this partnership was officially chaired by government officials, decisions were made collaboratively between community and government. Members of the partnership identified shared goals and strategies for addressing FASD. However, no direct provincial funding was provided to the partnership that resulted in the integration of many new FASD strategies and initiatives into existing services and programs rather than the creation of new programs. For example, as a result of its involvement in the FASD partnership, AADAC created a policy to prioritize pregnant women as recipients for their services. Although the partnership did not receive secured government funding, it did receive support through the allocation of staff resources, funding to support the travel of members, and grant funding to support community initiatives. Accessing grant funding allowed the partnership to provide support to existing FASD-related organizations or programs and to occasionally support organizations in implementing new FASD-specific programs. In addition to receiving provincial grant funding, the partnership was also instrumental in accessing private funding. One example is the initiation of the First Steps Program within the Catholic Social Services organization, to offer mentorship to women who are at high risk of giving birth to a child with an FASD. This program was largely funded by the private McDaniel Foundation.

Members of the partnership indicated that although it was at times challenging to work collaboratively across sectors (because the structures of many organizations and departments were not conducive to a collaborative approach), they were successful in their endeavors due to the passion of people involved. Furthermore, they stressed that much of the success of the partnership could be attributed to having the right people from the right organizations “around the table,” and the support of government leadership who deemed it important to have the initiative included in their job description instead of trying to support it “off the side of our desk.” Finally, members of the partnership also credited the success of the Alberta partnership to its community engagement model. The community engagement model involved the creation of and consultations with Regional FAS Coordinating Committees (now called FASD Service Networks) and the recruitment of key individuals (“champions”) from key departments and organizations to spread FASD-related information.

The conception phase that occurred in the late 1990s was characterized by multiple partnerships between researchers, FASD experts, service providers, community organizations, and government sectors from multiple regions. These partnerships were successful in sharing and advancing the understanding of FASD and promising initiatives with very little government funding. The development of guidelines for the prevention and diagnosis of FASD by the Alberta Medical Association and the beginnings of a pilot project to create a profile for children with FASD are both examples of the progress in FASD understanding that occurred during this phase. This period was also marked by a significant

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public awareness/education initiative that was undertaken and funded by the Ministry of Family and Social Services in the late 1990s.

Unfortunately, the early 2000s saw a reduction in senior government officials’ support for the FASD initiative (i.e., government reorganization eliminated the Ministry of Family and Social Services, creating three new entities and moving the Minister and Deputy). Members of the Alberta Partnership on FAS explained that without strong government leadership and support, the partnership began to fragment and break up. During this time the entire FASD initiative was moved to a different branch of the government, called Strategic Initiatives, with no staff positions assigned to it. Members of the Alberta Partnership on FAS also expressed that if provincial Ministers would have been more involved and able to recognize the strength of the community working together to provide comprehensive services within a continuum of care, there may have been increased support from government leadership and the FASD initiative would have continued to strengthen. Furthermore, members reported feeling that much of the history and strength of the model were lost during this transition.

3) Re-conceptualization

The third phase, re-conceptualization, involved the strategic decisions made by government representatives to reform the Alberta Partnership on FAS into the Alberta Government Cross-Ministry Committee on FASD (FASD-CMC). The decision to move from a joint community-government decision-making body to a strictly government decision-making body that would consult with community stakeholders, was made in an effort to regain government support for the FASD initiative. The creation of the FASD-CMC in 2003 was also intended to improve coordination between the government Ministries involved in the FASD initiative. Just prior to the formal creation of the FASD-CMC, the “Alberta Government made a commitment to work toward the prevention of Fetal Alcohol Spectrum Disorder (FASD), and to support those affected by FASD in the province.” 2(p.353)

Later in 2003, representatives from each of the nine partnering Ministries and AADAC were working on creating the Terms of Reference that would inform the basis for the Alberta FASD 10 Year Strategic Plan. By the end of that year, the Terms of Reference were endorsed by all partnering Deputy Ministers and the Chief Executive Officer of AADAC. An individual involved in the creation of the strategic plan emphasized that it attempted to incorporate existing initiatives and strategies already being implemented in the community: “the top didn’t just erode what was already happening at the ground level.” Once the plan was approved, the FASD-CMC also engaged community stakeholders to discuss how they were to be involved with the outcomes of the strategic plan.

4) Elaborations

The fourth phase of the development of the FASD-CMC provided stakeholders with the opportunity to refine and expand as a collective. Elaboration is defined as “involving many carefully arranged parts or details; detailed and complicated in design and planning.”1 In 2005, the Alberta FASD 10 Year Strategic Plan was approved, in principle, by the Alberta Children and Youth Initiative (ACYI) Deputy Ministers, and the Deputy Minister of Gaming, and a Ministers’ Report (MR) requesting funding for

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implementation of the FASD Strategic Plan was created. After multiple presentations and edits to the MR addressing questions and concerns of the partnering Ministers, the MR was signed by the partnering Ministers and approved by the Standing Policy Committee on Health and Community Living on September 11, 2006. However, after being first denied funding by the Treasury Board later that year, the FASD-CMC received only half ($4M) of the funding that was requested in the MR. Although the FASD-CMC believed that a fully-funded initiative would increase the quality and effectiveness of the strategy, they agreed to initiate the strategic plan with half the requested funding.

The original Plan was to redistribute funding to each of the partnering Ministries. However, as a result of the reduced funding, the FASD Service Networks were created to facilitate coordinated, collaborative, and efficient use of the funding in order to meet the specific needs of their communities. Incorporating the preexisting Regional FASD Coordinating Committees, seven regional FASD Service Networks were established across the province with the task of distributing funds to enhance FASD prevention and services for individuals affected or suspected of being affected by FASD. In the 2008/09 fiscal year, funding was increased to its proposed amount ($16.9M) approved in the 2006 MR and the number of Service Networks was increased from 7 to 12. The FASD Service Networks continue to disperse funding to provide and/or enhance coordinated services in the areas set out by the FASD-CMC. These areas include: targeted and indicated prevention, assessment and diagnosis services, and supports for individuals and caregivers. Also during the elaboration phase, the number of active FASD assessment and diagnostic clinics doubled, numerous conferences and training opportunities were initiated, and many new FASD programs and services were developed or existing services enhanced.

5) Reflection

The current phase of the FASD-CMC is one of reflection and evaluation. Reflection is defined as “serious thought or consideration.”1 Being at the midpoint of the 10 Year Strategic Plan, evaluations are being conducted in all of the outcome areas to ensure continued success. An important contextual factor that needs to be considered during this phase is that funding has not increased since 2009, even though it was recommended in the approved 2006 MR that funding increase annually until the 2012/13 fiscal year where it would be capped at 42.25M. While funding has not increased, the original outcomes listed in the Strategic Plan remain unchanged.

Conclusion

Currently, there is no formal documentation that captures the complete history of the FASD-CMC from its inception to its present state. This strategic analysis is an initial attempt to begin historical documentation of events that have led to the creation of the current FASD-CMC. The ICRER phases described in this report emerged from document reviews and interviews conducted with individuals who were or are significantly involved in the Alberta FASD initiative which has evolved into the current FASD-CMC.

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Table 4. Timeline of FASD Initiatives in Alberta

Year EventInceptionEarly1990s

Training in FASD started to be offered AlbertaChild Protection Services started recognizing a high prevalence of FASD in children in provincial care

Mid1990s

Alberta Government departments and social service agencies began looking for information on the prevalence of alcohol-related birth defects

Conception

Mid1990s

Social service agencies and provincial government departments began to collaborate on FASD prevention strategies and support persons affected or suspected of being affected by an FASD

1997 The FASD initiative started under the direction of the Ministry of Family and Social ServicesRegional FAS Coordinating Committees were developed (now called FASD Service Networks) and initiated programs such Coaching Families for the community

1998 The Prairie Province Fetal Alcohol Syndrome Partnership (AB, SK, & MB) was establishedThe first practices and guidelines for prevention and diagnosis of FASD were developed through the Alberta Medical AssociationAn extensive public awareness/education campaign was undertaken by the Ministry of Family and Social ServicesAlberta Partnership on Fetal Alcohol Syndrome (FAS) was establishedThe McDaniel’s Foundation was established and commitment to FASD through research and program development with Catholic Social Services, which initiated the First Steps program

1999 The Prairie Province Fetal Alcohol Syndrome Partnership expanded to include Yukon, North West Territories. and Nunavut and was renamed the Prairie Northern FAS Partnership

2000 The University of Lethbridge was the first Alberta University to undertake FASD research

2001 The Prairie Northern FAS Partnership expanded to include British Columbia and was renamed the Prairie Northern Pacific FAS PartnershipThe first funding opportunity to support FASD assessment and diagnostic clinics was released and the PCAP model was establishedClinics started the first pilot project to create a profile of children with FASD

Early2000s

Support from the Alberta government senior officials’ for the FASD initiative was reducedThe FASD initiative was moved to the new Strategic Initiatives branch

Re-conceptualization2002 The Government of Alberta committed to working towards the prevention of Fetal Alcohol

Spectrum Disorder (FASD), and to support those affected by FASD in the province2003 The Prairie Northern Pacific FAS Partnership was renamed the Canada Northwest FASD

PartnershipThe Alberta FASD Cross-Ministry Committee (FASD-CMC) was formed Partnering Deputy Ministers from nine Ministries and the Chief Executive Officer of AADAC endorsed the Terms of Reference that formed the basis for the Alberta FASD 10 Year Strategic Plan

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Elaborations2004 Development of the Strategic Plan Initiatives began2005 The Deputy Ministers from the Alberta Children and Youth Initiative (ACYI) approved, in

principle, the Alberta FASD 10 Year Strategic PlanIn the 2005/06 budget year, approval was obtained to double funding to the Alberta Centre for Child, Family, and Community Researchthrough whom FASD research activities could be funded

2006 The Alberta 10 Year Strategic Plan was signed off by the partnering Ministers and approved by the Standing Policy Committee on Health and Community Living and recommended to CabinetCabinet reviewed the Ministerial Report and requested performance measures and targets for the PlanCabinet approved and forwarded the Strategic Plan to Treasury Board for funding approvalTreasury Board denied funding for the Alberta FASD 10 Year Strategic Plan.

2007 The FASD-CMC received $4M of the $8.5 M requested from the Cabinet Policy Committee (CPC) on Community Services for the implementation of the Plan

Focus on the local level moved forward to establish the seven FASD Service Networks in all Alberta zones

2008 Ten active FASD assessment and diagnostic clinics existedFunding was increased to its proposed amount ($16.5M) approved in the 2006 MRFASD Service Networks grew from 7 to 12

2009 The number of active FASD assessment and diagnostic clinics increased to 20The Promising Practices, Promising Futures: Alberta FASD Conference occurred in Edmonton in FebruaryLeading Practices Workshops occurred in March for staff from Alberta’s 12 FASD Service NetworksProfessional development was held for the FASD Community of Practice Research Southwestern Child and Family Service AuthorityThe Institute of Health Economics hosted a Consensus Development Conference on FASD: Across the Lifespan which occurred in Edmonton

2010 E-Learning Modules were developed by the Family Supports for Children with Disabilities program of the Ministry of Children and Youth Services, and were coordinated by the Social Work and Disabilities Studies Department of Mount Royal CollegePromising Practices, Promising Futures: Alberta FASD Conference occurred in Calgary in FebruaryOn behalf of the FASD-CMC, Human Services Ministry provided grants to each of the FASD Service Networks to conduct evaluations

Reflection2011 5-Year Evaluation occurred as part of the Cabinet Policy Committee of the Alberta

Government.2

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Summary

FASD-CMC has established an innovative grass roots informed cross-ministry governance structure.

The involvement of community, academic, and government stakeholders was established by the Alberta Partnership on FAS and has expanded with the FASD-CMC.

The establishment of an extensive and long-term partnership between numerous provincial ministries.

FASD-CMC has created a province-wide, evidence-based, coordinated response to FASD.

Recommendations

It would be advantageous for the FASD-CMC to identify and assign a group to conduct further interviews and to expand the current timeline. The FASD-CMC is one of the first initiatives of its kind and it is imperative to document valuable information from current and past stakeholders that describe the development of the program.

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References

1. Oxford. Oxford Dictionary. 2012; http://oxforddictionaries.com/.2. Milne D, Moorhouse T, Shikaze K, Cross-Ministry Members. A cross-ministry approach to FASD

across the lifespan in Alberta. In: Riley EP, Clarren S, Weinberg J, Jonsson E, eds. Fetal Alcohol Spectrum Disorder: Management and Policy Perspectives of FASD. Weinheim, Germany: Wiley-VCH Verlag & Co.; 2011:353-368.

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Outcome 5:The planning and delivery of provincial government programs and services associated with FASD is accomplished through a collaborative approach.

Evaluation Question 5:Is a Cross-Ministry Committee structure effective in planning and delivering programs and services associated with FASD in a collaborative approach?

Evaluation Question 5d:What are the ripple effects of the CMC investments? (Other Alberta FASD work not necessarily funded by CMC)

Prepared By:Cheryl PothJacqueline Pei ACCERT Evaluation Team Members:David St. Arnault, Jenelle Job, Ellis Chan, Wence Leung, Sukhpreet Tamana, Kendra McCallum, Laura Gould, Virginia Tze, Katy Wyper, and Erin Atkinson.

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Table of Contents

Outcome 5............................................................................................................................................................................... 229Evaluation Questions 5d.................................................................................................................................................... 229

Method...................................................................................................................................................................................... 229Ripple Effects......................................................................................................................................................................... 229

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The planning and delivery of provincial government programs and services associated with FASD is accomplished through a collaborative approach.

Research Report: Outcome 5, Evaluation Question 5d

Outcome 5:

Evaluation Questions

5: Is a Cross-Ministry Committee structure effective in planning and delivering programs and services associated with FASD in a collaborative approach?

5d: What are the ripple effects of the CMC investments? (Other Alberta FASD work not necessarily funded by CMC)

Method

The Alberta Clinical and Community-based Evaluation Research Team (ACCERT) was formed to address Evaluation Questions 2a, 5b, c, and d, and 6 a, b, c, d, and e from Outcomes 2, 5, and 6. It is important to note that the Methods section for this outcome (Outcome 5, Question 5d) can be found in Appendix A of Outcome 2, Question 2a.

Ripple Effects

The network approach was adopted by the CMC as a means to best support delivery of service to a complex population through a collaborative approach involving dedicated personnel and informed by evidence-based practices. The network has become fluid and interspersed within multiple realms of practice resulting in challenges when attempting to capture its impact, much like ripples in all directions from a stone thrown into the water. To that end, the ripple effects can be conceptualized as a situation wherein an effect from an initial state can be followed outwards.

In our review of these evaluation results, it is clear that collaborative efforts and the formation of relationships have been a primary component of the networking efforts, the results of which have generated partnerships and shared efforts with programs well beyond those funded by the CMC. In this way, the network has had an impact outwards, in ways that were not expected and are difficult to quantify. A shared goal of prevention of FASD through optimized service delivery has led to high levels of dedication and commitment in the delivery of service leading to innovative approaches and a willingness to step beyond what is stipulated in their job description. These ripples have also highlighted the need for evidence-based practices prompting high motivation for developing getter links between research and practice. To do this effectively requires additional funding for innovative activities through research grants, which have realized the service delivery potential. All these efforts combined have clearly placed Alberta at the forefront of FASD research and practice in the world.

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Outcome 5:The Planning and delivery of provincial government programs and services associated with FASD is accomplished through a collaborative approach.

Evaluation Question 5:Is a Cross Ministry Committee structure effective in planning and delivering programs and services associated with FASD in a collaborative approach?

Evaluation Question 5e:An examination of the Cross Ministry Committee (CMC) and 12 Service Network Model in terms of governance, structure, accountability, funding, sustainability, and recommendations.

Prepared by:Susan Abells, MAPartner, Abells Henry Public Affairs

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08Fall

Executive Summary

This report examines the governance model supporting the Fetal Alcohol Spectrum Disorder – Service Network Program, including structure, accountability, funding, and sustainability. It is ‘Part 5e’ of Evaluation Question 5: Is a Cross Ministry Committee structure effective in planning and delivering programs and services associated with FASD in a collaborative approach? Evidence supporting the findings in this report is from evaluation reports provided to the Year 5 Evaluation project.

This examination of the Service Network Program governance model raises important questions: What is a “collaborative approach” and how is it developed and implemented? How does government cede accountability to autonomous, self-regulating actors in order to enable members of the network to collaborate to achieve common goals? How are strong vertical and horizontal linkages established between actors working at different geographic scales (local to national) and in different disciplines in order to support accountability and collaboration?

Theories from the literature on network governance help clarify how this model supports key functions of accountability and collaboration, and provides important tools to examine the efficacy of the Service Network Program governance and structure. These tools include the regulation of self-regulation, with “hands-off” tools that support network design and framing and “hands-on” tools that support network management and participation. Collaboration is explained as a means of fostering innovation in the public sector with associated costs of collaboration, research and evaluation, and knowledge mobilization explained as network maintenance,3 distinct from administrative costs, and necessary to sustaining networks over time. Finally, the emergence of an important new role in network governance is identified, the bridging organization, group, or individual,4 which is required to establish strong vertical and horizontal linkages to support accountability and collaboration.

Following is a summary of the conclusions drawn from this examination of the Service Network Program governance model and structure:

Network Design and Framing:

The Service Network Program is built on a strong foundation established by the FASD 10 Year Strategic Plan (2007-2017). The decision to adopt a network governance model is identified as an adaptive management response to funding constraints, rather than the expression of a core belief that a collaborative approach is the most appropriate way to achieve desired outcomes. The original request for funding to support the implementation of the Strategic Plan in 2006 resulted in only half the funds requested. Consequently, the FASD-CMC made the decision to disburse funds to community-based organizations to deliver needed FASD programs and services in their respective regions.

Network Management and Accountability:

The Service Network Program has been successful in developing the hands-on tools required to manage network operations and accountability at both the local and provincial scales. The bridging organizations needed to support the Service Network Program management and accountability relationships are well established, with clearly defined roles and responsibilities. While the Service

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Networks vary significantly in their development with respect to network governance and operational processes, the hands-on tools are now in place to support continuous improvement.

Network participation and MAINTENANCE:

While tremendous efforts have been made to collaborate, these efforts have largely been supported by the passion and determination of those working in the Service Network Program. The bridging organizations/groups established to support horizontal linkages within the Service Network Program have largely taken the form of subcommittees responsible for particular activities. However, the three subcommittees struck to deliver these activities only roughly correspond to the outcomes and strategies identified in the FASD 10 Year Strategic Plan. As a result, some collaborative efforts have been more successful than others. Local needs assessment and strategic planning, driven by the strongest bridging organizations have had the most success. The Operational Program Review subcommittee is well supported by hands-on tools and is well positioned to deliver its activities and to support continuous improvement in the area of network operations and funding.

The other subcommittees have not been well positioned to succeed. While there have been successful efforts made to mobilize knowledge through the annual FASD conferences and other learning tools, a common theme arising from the evidence has been the lack of communications about current research and best practices. The traditional communications plan that supports the Communications sub-committee is not well suited to supporting and developing collaboration and knowledge mobilization, and the Data Collection subcommittee has had difficulty delivering suitable hands-on tools to guide research and evaluation.

Funding:

While the funding model accurately reflects the strong effort made to develop the management capacity of the Service Networks, it does not address issues related to Network stability that requires a commitment by government to a longer term funding cycle (a three-year rather than an annual cycle). The Service Network Program budgeting process does not separately recognize costs associated with maintaining the network, leaving collaboration, research and evaluation, and knowledge mobilization under-resourced, and workers feeling that these outputs are not a priority. Also, the FASD funding model does not recognize the need to build the capacity of Service Networks to actively participate as partners in research and evaluation, which relies heavily on their participation, and often requires intensive data collection.

Sustainability:

With the government’s new demands for results-based budgeting, there is an urgent need to begin a strategic dialogue with Service Network partners regarding what success means in relation to the Service Network Program, how it is measured, and the expectations of Service Network partners to achieve this success. This strategic conversation will drive the re-design, framing and funding of the next five years, and any future Strategic Plan post 2017, and will determine what sustainability means within the FASD context.

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Recommendations Clarify the design and framing of the FASD 10 Year Strategic Plan (2007-2017) by clearly defining

measurable client and project outcomes that describe Government of Alberta expectations of success for those living with FASD, and for the Service Network Program and its Network partners.

Strengthen horizontal linkages supporting Service Network participation and maintenance by restructuring the Service Network Program subcommittees to better reflect the four key activities, outcomes, and strategies identified in the FASD 10 Year Strategic Plan.

Provide stability and support the Service Networks’ long term planning efforts by allocating operational funding on a three-year cycle.

Budget for collaboration, research and evaluation, and knowledge mobilization separately as participation and maintenance, which are core responsibilities of bridging organizations and are needed to sustain Service Network operations.

Develop a shared understanding among Service Network partners of what sustainability means within the context of FASD, for clients who are affected by it and for the Service Network Program, as well as the roles and responsibilities of all those working collaboratively to achieve it.

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Table of Contents

Outcome 5:.............................................................................................................................................................................. 235Evaluation Questions 5, 5e............................................................................................................................................... 235

Introduction........................................................................................................................................................................... 235Methodology...........................................................................................................................................................................235A framework for examining network governance................................................................................................236Theoretical Foundations of Network Governance................................................................................................237

Accountability in network governance....................................................................................................................... 237The regulation of self-regulation.................................................................................................................................. 237Bridging organizations, groups and individuals.................................................................................................... 238Collaboration in network governance........................................................................................................................ 238Collaboration as Innovation............................................................................................................................................ 239Network Maintenance........................................................................................................................................................ 239

Alberta’s Service Network Program Governance Model....................................................................................239Network structure: Design and framing.................................................................................................................... 240Key findings............................................................................................................................................................................ 241

Network structure: Management and accountability.........................................................................................242Key Findings........................................................................................................................................................................... 243

Vertical linkages: Mapping network accountability.............................................................................................245Strengthening vertical linkages..................................................................................................................................... 246Key Findings........................................................................................................................................................................... 247

Network structure: Participation and maintenance.............................................................................................248Horizontal linkages: Mapping network participation.........................................................................................248Strengthening horizontal linkages............................................................................................................................... 249Key Findings........................................................................................................................................................................... 251

Funding.....................................................................................................................................................................................255Service Network Program funding model................................................................................................................. 255Key findings............................................................................................................................................................................ 256

Sustainability......................................................................................................................................................................... 257Conclusions............................................................................................................................................................................. 258

Network model: Governance and Structure............................................................................................................. 258Funding Model....................................................................................................................................................................... 260Sustainability......................................................................................................................................................................... 260

Recommendations...............................................................................................................................................................261Network Governance and Structure............................................................................................................................ 261Funding..................................................................................................................................................................................... 262Sustainability......................................................................................................................................................................... 262

Evaluation Questions for Year 7 and Year 10..........................................................................................................263Evaluation Questions for Year 7.................................................................................................................................... 263Evaluation Questions for Year 10.................................................................................................................................. 263

References............................................................................................................................................................................... 265

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The planning and delivery of provincial government programs and services associated with FASD is accomplished through a collaborative approach.

Research Report: Outcome 5, Evaluation Question 5e

Outcome 5:

Evaluation Questions

5: Is a Cross Ministry Committee structure effective in planning and delivering programs and services associated with FASD in a collaborative approach?

5e: An examination of the Cross Ministry Committee (CMC) and 12 Service Network Model in terms of governance, structure, accountability, funding, sustainability, and recommendations.

Introduction

Fetal Alcohol Spectrum Disorder (FASD) describes a cluster of birth defects caused by prenatal exposure to alcohol. Since 1996, various provincial government departments and agencies have been actively involved in the prevention of alcohol related birth defects and the support of individuals affected by prenatal exposure to alcohol. Currently, the Government of Alberta ‘s FASD Cross-Ministry Committee (FASD-CMC) has a mandate to support a collaborative approach to plan and deliver provincial government programs and services associated with FASD, and is responsible for overseeing the development and implementation of Alberta’s FASD Service Network Program.

This document is intended to inform the compilation of a final comprehensive report summarizing the findings of the FASD Year 5 Evaluation project, which includes the collaborative efforts of many different stakeholders, including provincial ministries; the FASD-CMC; the FASD Service Networks and service providers; Alberta Child, Family, and Community Research (ACCFCR); the University of Alberta’s ACCERT Evaluation Team (Alberta Clinical and Community-based Evaluation Research Team); with the support of consultants.

Methodology

The purpose of this report is to examine the governance model supporting the Service Network Program, including structure, accountability, funding, and sustainability of the system.

The report includes recommendations on how this governance model may be strengthened, what data might be collected, and what questions may be investigated to add value to the Year 7 and Year 10 evaluations of the Government of Alberta’s FASD 10 Year Strategic Plan.

The consultant was asked to review currently available reports provided by the ACCFCR, including all available reports from the Year 5 Evaluation project, Government of Alberta reports from the FASD-CMC, and annual reports from each of the 12 FASD Service Networks.

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The consultant attended two meetings of the Year 5 Evaluation project team, where key findings and challenges were discussed (June 5 and August 2, 2012) and consulted with the following researchers and public managers:Tara Hanson: Provided information about the project and key documents for review, as well as direction for the preparation of this report.

Dr. Jacqueline Pei and the ACCERT Evaluation Team: Discussed the theoretical framework for governance and collaboration, and explored how their findings from focus group research conducted to support questions 5b, 5c, and 5d informs this report on 5e.

Shelley Birchard: Discussed elements of the annual FASD-CMC Strategic and Operational Plan, the funding model, and activities of FASD-CMC subcommittees.

Denise Milne: Discussed elements of the annual FASD-CMC Strategic and Operational Plan, the funding model, and activities of FASD-CMC subcommittees.

Janice Penner: Discussed how the funding model was developed and implemented, and the development of FASD-CMC subcommittees and their activities.

Limitations: Key findings for this report were identified through research and reporting conducted by other members of the FASD Year 5 Evaluation project, including KPMG and the University of Alberta’s ACCERT Evaluation Team. Access to the raw data was not available due to ethics compliance requirements.

A framework for examining network governance

Network governance is a global trend that has emerged over the last 20 years as a means of addressing complex societal challenges. It is an approach that recognizes that no single actor has sufficient resources or expertise to address these complex challenges alone. Network governance is a means of spreading authority and responsibility for decision-making widely, sharing it within and among different levels of government, non-government organizations, businesses, and individuals.4

For the purposes of this report, network governance is defined as a goal-oriented process, which involves the participation of autonomous actors from the public sector, civil society, and the private sector working together to achieve common goals based on a set of agreed-upon rules that enable them to share resources and work interdependently.

To successfully implement this form of governance, the role of government must shift from holder of expertise and sole decision-maker to one of facilitator and broker of knowledge and decision-making.4 This shift from the traditional hierarchical form of state-controlled government to network governance, characterized by shared responsibility and accountability with non-state actors, has resulted in two fundamental challenges. The first relates to authority, understood here as accountability and legitimacy, and how government’s authority is maintained while at the same time enabling shared decision-making. The second relates to collaboration, a function that is essential to the success of network governance, but which requires time, investment, and the development of new skills and competencies.

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This report evaluates the network governance model used by the Service Network Program in terms of its structure and how it supports the key functions of accountability and collaboration by examining:

1. How government cedes accountability to autonomous, self-regulating actors in order to enable members of the network to collaborate to achieve common goals.

2. How the network establishes vertical and horizontal linkages between actors working at different geographic scales (local to national) to support both accountability and collaboration.

3. What a “collaborative approach” is and how it is developed, implemented and maintained.

This framework is used to examine non-service delivery aspects only of the FASD Service Network system as they relate to governance, structure, accountability, funding, and sustainability.

Theoretical Foundations of Network Governance

This section identifies theories from the literature on network governance that help explain how the network governance model supports key functions of accountability and collaboration. Specifically, this report draws from the literature review on governance by de Loë et al.4commissioned by Alberta Environment that identifies key areas of concern in network governance that need to be addressed, such as accountability and legitimacy, the interplay among actors working at different geographic scales, evaluation and knowledge mobilization. He also identifies an important new role unique to network governance, that of the “bridging” organization, group or individual. This report also draws on the work of Sørensen and Torfing who explain how accountability is achieved in network governance through the “regulation of self-regulation,” and how collaboration should be understood as a means of fostering innovation in the public sector, rather than simply as a means of reducing costs. The work of McGuire3 explains costs such as collaboration, research and evaluation, and knowledge transfer as network maintenance, distinct from administrative costs, and associated with sustaining networks over time.

Accountability in network governance

In multi-actor and networked governance, accountability and legitimacy are outcomes of experience, history, and trust.4 How accountability is granted and legitimacy is achieved are recognized as fundamental challenges of this form of governance. For governments to cede authority, rules must be established to enable autonomous, self-regulating actors to collaborate in order to achieve common goals. Sørensen and Torfing2 describe the process of establishing these rules as “the regulation of self-regulation,” which explains how public managers can influence the shape of governance processes through different kinds of interventions that authorize actors at other levels to exercise authority and provide oversight. This approach allows governments to leverage and mobilize the knowledge, resources, and energies of public, private, and civil society actors while retaining their ability to influence the scope, process, and outcomes of networked policy-making. The key challenge is to avoid regulating governance networks in ways that eliminate their capacity for self-regulation.

The regulation of self-regulation

In order to exercise authority while sharing the responsibility of governance with other actors, public managers can use different tools, some of which are “hands-off” (that work at a distance from self-regulating actors), and others that are “hands-on” (that work through close interaction with the other actors). Hands-off tools are used to recruit and empower network actors and provide basic parameters for networked policy interaction. These tools include network design, which aims to influence scope,

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character, and composition, and network framing, which seeks to determine the goals, storyline, and fiscal conditions.

Hands-on tools facilitate the day-to-day regulation of the network based on precise knowledge of the networked policy processes. These include network management, which refers to efforts to reduce tensions, resolve conflicts, empower actors, and lower transaction costs by providing inputs and resources, and network participation that endeavours to influence the policy agenda, the range of options, the premises for decision-making and negotiated policy outputs.2 McGuire3 explains the tools associated with network management and participation as network maintenance, which requires ongoing synthesizing and mobilization by building and nurturing connections between participants based on trust and information exchange, stimulating the network into action.

Bridging organizations, groups and individuals

To shift the role of government from holder of expertise and sole decision-maker to that of facilitator and broker of knowledge and decision-making, an important new role has emerged in network governance, that of the “bridging” organization, group, or individual.4 These bridging actors support accountability and collaboration by providing critical links between domains, such as between policy and science, government and community, and quality assurance and service delivery. These “bridges” help actors working in different domains and at different geographic scales and institutional levels to make sense of the challenges they face, supporting collaborative learning and the co-production of knowledge that leads to innovation and change.4

Several bridging organizations, committees, and individuals in key staff positions have emerged to support Alberta’s Service Network Program system, creating both vertical and horizontal linkages. Learning as a social process is dependent upon strong vertical and horizontal linkages to mobilize knowledge. Bridging actors help create conditions for collaboration, deliberation, and the mobilization of knowledge from different sources.4

Collaboration in network governance

Social and ecological systems are interconnected and nested, and few challenges can be resolved if these relationships are ignored. The collaborative process is iterative and non-linear in character, and each actor is required “to play a key role in better coordinating actions, improving information flows, and synthesizing and mobilizing knowledge” (p. 23).4 Adaptability, flexibility, and collaborative learning are key concerns in network governance. Complex systems, characterized by uncertainty and change, rely on adaptive management, and learning is achieved through collaborative and mutual development when knowledge is shared.4

A commitment to collaboration is more than just a commitment to communicate and to consult. The Government of Alberta, in its facilitator’s guide to collaborative conversations,6 defines collaboration as “a process for setting collective priorities, and incorporating different perspectives. This is reflected in the way people commit to working together to meet their shared goals. It allows for the blending of perspectives, expertise, resources and shared accountability and responsibility (p.2).”

To be effective collaborators, network managers must possess a range of strategic and collaborative competencies in order to develop, implement, and revise strategies in a context sensitive, responsive manner. Network governance brings these types of competencies to the fore. Strategic competencies

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include the ability to tackle unconventional problems by being flexible and adaptable when using their skills to negotiate goal alignment, implement project management, and develop policies and procedures. Collaborative competencies include communications skills, storytelling capacities, talent for coaching, cooperation, relationship building, and trust building.2 McGuire3 refers to these network management competencies as synthesizing and mobilizing, which include creating trust, exchanging information, exchanging ideas, resolving conflict, developing communications and information infrastructure. Actors at senior management levels tend to have these competencies, however, because network governance distributes responsibility widely across geographic scales and knowledge domains, lower level managers are often in need of training to transition their role “from rule-observing bureaucrats to strategic developers and from case and program managers to network mangers.”2(p.254)

Collaboration as Innovation

In their review of the theory that claims a more open and relational approach is needed to respond to the growing complexity in modern societies, Sørensen and Torfing,1 found that innovation in the public sector (public innovation) is spurred by collaboration in a cyclical way: first, through the generation of ideas when different experiences are circulated, challenged, expanded and transformed through multi-actor collaboration that facilitates mutual learning; second, through the selection of ideas, which is improved through the joint-assessment of competing ideas, facilitating compromise and agreement on what should be implemented; third, through the implementation of new ideas, which is enhanced through joint ownership of new initiatives, helping to mobilize resources by supporting flexible adaptations and adjustments; and fourth, through the dissemination of innovative practices when these are propelled through social and professional networks that facilitate the exchange of ideas, learning and joint action through horizontal linkages that cross geographic and disciplinary boundaries. The role of public managers in this cycle “is not to produce public innovation all by themselves but rather to create, institutionalize, and manage open and flexible arenas for collaborative interaction with other relevant and affected actors.”1(p.852)

Building on the work of other researchers (such as Ansell and Gash5), Sørensen and Torfing propose a methodology to evaluate and map the interplay between different factors that may lead to the production and dissemination of “public innovation outputs,” which include policy innovation, program and service innovation, process innovation, and innovation in network design and framing. “The evaluation of public innovation outcomes may either spur the dissemination of ‘best practice’ or stimulate the search for ‘next practice’ in terms of a creative development of future practices.”1(p.859)

Network Maintenance

McGuire,3 in his critical examination of the differences and similarities of network and hierarchical management in the public sector, draws from an extensive body of research grounded in economic and public management theory to describe tasks associated with network maintenance. Similar to Sørensen and Torfing2 he identifies tasks related to design and framing as “activating and framing,” and tasks associated with network management and participation as “synthesizing and mobilizing,” which relate to the ongoing maintenance of the network and refers to building and nurturing relationships based on trust, information and idea exchange, and knowledge transfer.

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Alberta’s Service Network Program Governance Model

This section examines how Alberta’s Service Network Program established a structure to support the key functions of accountability and collaboration through the development of key hands-off and hands-on tools.

Network structure: Design and framing

The key hands-off tool used in the design and framing of the Service Network Program is the FASD 10 Year Strategic Plan(2007-2017). The history that led to the development of this plan provides insights into the evolution of the design and framing of the current FASD Service Network Program.

The report by Poth and Pei on the history of the development of the Service Network Program identifies four different phases of development.7 The first phase commenced when FASD began to be recognized and addressed in the early 1990s, and the Government of Alberta (GOA) established a Workforce Development initiative to support the training of social workers and support agencies to raise awareness of FASD. The second phase began with the formalization of cross-sectoral partnerships between GOA and community stakeholders, initiating cross-sectoral collaboration efforts and leading to the formation in 1998 of the Alberta Partnership on Fetal Alcohol Syndrome (FAS), chaired by GOA officials. While government and community members of this Partnership made decisions collaboratively and identified shared goals and strategies for addressing FAS, the Partnership received no direct provincial funding. Instead, partners integrated the shared goals and strategies into their existing programs and services. The Partnership also developed a community engagement model that led to the creation of Regional FAS Coordinating Committees and the recruitment of “champions” from key departments and organizations to disseminate information about FAS. In the early 2000s, GOA support for the Partnership began to wane, and without government leadership, the Partnership began to fragment.

To regain government support for FASD, the third phase re-conceptualized the FAS initiative in 2003 and transformed the Partnership into an Alberta Government Cross Ministry Committee on FASD (FASD-CMC), a GOA decision-making body providing a collaborative approach to the planning and delivery of government FASD programs and services. The fourth phase of the development of the Service Network Program has been its elaboration under the leadership of the FASD-CMC.

The Government of Alberta’s FASD 10 Year Strategic Plan (2007-2017) is the key hands-off tool that has guided the development of Alberta’s Service Network Program. It has influenced network design by determining the character and composition of the Service Network: “The Strategic Plan is designed as a direction-setting document to provide a broad framework for the coordination, planning and delivery of relevant FASD services across Alberta. Development of the plan has engaged community partners and federal government agencies responsible for FASD initiatives.”8(p.7)

The Plan also identifies the scope of the initiative by focusing on three areas of service: Awareness and Prevention, Assessment and Diagnosis, Supports for Individuals and Caregivers, and four areas of activity: Research and Evaluation, Strategic Planning, Training and Education, and Stakeholder Engagement. It identifies specific outcomes and strategies to implement each of the three areas of service and four areas of activity.

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This Plan has influenced network framing by telling the story of FASD in Alberta and describing the “Made-in-Alberta Approach” that “focuses on developing and delivering community-based solutions that are supported by government policy and funding.”8(p.5) The Plan identifies the vision and defines the key role of government and the central role of collaboration in the mission statement: “Government of Alberta will provide leadership and work collaboratively with partners to provide FASD services in Alberta.”8(p.7)

The Plan also outlines the Guiding Principles to direct the planning process and which articulate key assumptions about FASD (FASD is a condition that spans a person’s lifetime; FASD services are needed across the continuum of prevention, diagnosis and support of affected individuals and families) and how the government plans to approach this complex societal issue (a cross-government approach aligned with other government initiatives; a wide range of perspectives that is inclusive of Aboriginal and cultural communities; collaboration with stakeholders is critical.)8

Key findings

When the FASD 10 Year Strategic Plan (2007-2017) was first approved by GOA’s Standing Policy Committee on Health and Community Living in 2006, the FASD-CMC was to receive funding from GOA and re-distribute it to each of the partnering GOA ministries.7 When the approved Plan was submitted to Treasury Board in 2006, funding was initially denied, and then only half ($4M) of the original request was allocated later that year. To make the best use of the limited funds available, the FASD-CMC decided to build on the community engagement model developed by the previous Alberta Partnership on FAS by transforming seven of the Regional FAS CoordinatingCommittees into regional FASD Service Networks, enabling communities to make the most efficient use of funding received. For 2008/2009, Treasury Board increased funding to the full request made in the original 2006 submission ($16.9M), and the FASD-CMC increased the number of regional Service Networks to 12. These funding challenges are addressed in more detail in Section 5 of this report.

Transformation and formation of the 12 Service Networks comprising the Service Network Program began in 2007 and was completed in 2009. Service Networks are designed as community-based and community-led partnerships. They are to reflect local priorities and needs while at the same time demonstrating alignment with provincial objectives and strategic direction of Alberta’s 10 YearFASD Strategic Plan.

According to the Provincial Evaluation Report of the FASD Service Networks,9 the Service Network Program attempted, where possible, to leverage existing infrastructure (interagency committees, service providers, funding, etc.) by developing Service Networks aligned with existing community capacity. As a result, the Service Networks are not uniformly structured. Nine of the 12 FASD Service Networks are not legal entities and operate under the guidance of a Network Leadership Team. Each of these Service Networks receives and distributes funding from the FASD-CMC to provide a continuum of coordinated services in theservice categories defined in the FASD 10 Year Strategic Plan. Two of the Service Networks (Lakeland and Mackenzie) are incorporated under the Societies Act and are led by a Board of Directors. These two Service Networks provide services directly to the communities they serve, and do not redistribute funding from the Service Network Program to service providers. The Métis Settlements Executive Council provides leadership for the Métis Settlements FASD Network.

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The Provincial Evaluation Report 9 identified the key challenges related to the design and framing of the Service Network Program, which are all related to the lack of clearly defined and articulated measurable outcomes for the Service Network Program in the FASD10 Year Strategic Plan. This lack of clarity has led to confusion over what the Provincial Evaluation Report describes as the “scope” of the project, and is addressed in the report in three recommendations, which call for clarification of the scope through the identification of clearly defined measurable outcomes that are then evaluated through ongoing evaluation that identifies and uses appropriate indicators to track and measure change over time.

Network structure: Management and accountability

Hands-on tools are used to facilitate the day-to-day regulation of Alberta’s Service Network Program. Three key tools have been developed to regulate the operation of the Service Network:

1. FASD-CMC Strategic and Operational Plan is developed annually and describes in detail the annual operational priorities of the FASD-CMC, including funding allocation and expected results and applications. Included in this document are:

FASD-CMC Terms of Reference, describing the purpose of the Committee; principles guiding cross-ministry planning; membership, including each member’s roles and responsibilities; identification of Committee Co-Chairs; and the reporting structure.

FASD-CMC Communication Plan, developed annually, describing the purpose of the plan, desired outcomes, target audiences, key messages, potential barriers and mitigation strategies, and a rollout plan with a specified list of key activities.

FASD-CMC Operational and Support Responsibilities, identifying key annual activities of FASD-CMC, expected outputs, and the operational lead(s) for each activity.

Integration of Service Network Program with other GOA initiatives, making explicit connections between service pillars (Awareness and Prevention; Assessment and Diagnosis; Supports for Individuals and Caregivers; Education and Training; Research and Evaluation), operational priorities for each pillar, and specific links to other GOA initiatives.

2. Service Network Program Operating Grant Policies, originally developed in consultation with key stakeholders in 2007 in the form of guidelines, have been updated annually to support accountability and continuous improvement of the Service Network Program (Revised Draft, April 2012). These policies apply to Service Networks funded by GOA under the leadership of the FASD-CMC through grants from Human Services (the administrative lead for the Service Network Program). This key hands-on tool outlines core elements of the Service Network Program, including:

Guiding principles and governance structure, including roles and responsibilities. Description of program administration, including how funding is disbursed through Human

Services; planning responsibilities of Service Networks receiving funding (including an annual Business Plan and Grant Application); reporting requirements for Service Networks that receive funding; recognition that a maximum of 20% of funding can be used to support administrative costs with the remainder to be spent on service provision; and responsibilities for contract management (between funded Service Networks and service providers, if these services are contracted out).

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Description of the three funded service categories (Awareness and Prevention, Assessment and Diagnosis, Supports for Individuals and Caregivers), including definitions, identified outcomes, best practices and other considerations.

Thirteen Appendices that provide templates and samples of key documents the Service Networks are required to prepare in order to ensure consistency and comparability.

3. Network Business Plans and Grant Applications are prepared annually by each Service Network and are to rely on a needs assessment conducted with their community partners and clientele. Quarterly and annual reporting is required from the Service Networks, demonstrating that they are meeting the guidelines as set out in the Service Network Program Operating Grant Policies.

Key FindingsIn March 2011, the FASD-CMC undertook a review to assess each Service Network’s stage of development and current operation in core non-service delivery areas.10 The objectives were to assess the degree of alignment between the Operating Grant Policies and current operations of the Service Networks in order to promote improvement of governance and business operations, identify ways to strengthen the program guidelines and other mechanisms for accountability and continuous improvement, and provide data for the FASD annual report and provincial evaluation.

The scope of the KPMG review covered six core functional areas: network governance, planning, funding decisions, financial management, contract management, and performance reporting. Alignment with the Operating Grant Policies was measured and assessed as: Excellent (E), where the evidence indicated that network policies, processes, roles, and responsibilities in each core functional area and overall are well developed, documented, and implemented; Very Good (VG), where the evidence indicated that these are developed, but may require refinement, further documentation, or focused implementation efforts; or Developmental (D), where the evidence indicated that these are in an early stage of development and documentation.10 See Table 1 below.

The Provincial Evaluation Report of the FASD Service Networks9 found that the Networks varied significantly at the time of their establishment in the FASD–SNP, from having no pre-existing partnerships, collaborations, and infrastructure relating to FASD in their region, to being long-established operating groups with multiple funding sources. As a result, Service Networks vary significantly in their level of development with respect to governance and operational processes. The report found that the Service Networks believe that many of the program guidelines, resources, and tools developed by the FASD-CMC have supported their implementation of the program, and assisted them with respect to avoiding potential conflicts of interest and in defining expectations of the programs and services they fund.

Table 1: Evaluation of Service Networks in relation to six core areas of functioning and overall

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* The Lakeland FASD Network and MacKenzie Regional FASD Network were not reviewed in the area of contract management because these Service Networks provide services directly in their regions and do not contract with service providers.

† The Métis Settlements FASD Network was not reviewed in the area of financial management as the FASD-CMC provided the Métis Settlements Executive Council that provides Network leadership with exemption from the Service Network Program Operating Grant Policies as they pertain to financial management.Note: Central FASD Network was not included in the evaluation by KPMG as they had recently undergone an evaluation.

Dr. H. Wirzba and D. Stonehocker11 also conducted a comparative analysis of the governance models of two Service Networks, South Alberta and Lakeland. These two Networks were chosen due to the structural differences between their chosen models to deliver services. A Network Leadership Team provides South Alberta FASD Network with leadership, whereas the Lakeland Network was constituted as a legal entity under the Society’s Act and operates under the leadership of a Board of Directors.

The South Alberta Network was established in 1993 as a FAS Coordinating Committee. It continues to operate as a volunteer network of individuals and organizations delivering FASD services through a range of community agencies that may or may not be contracted through the Service Network. This Service Network is focused on building community capacity and has not become a direct service provider. A paid coordinator was hired in 2008 with receipt of funding from Service Network Program.

Lakeland Network began in 1994 as a Lakeland FAS Committee with membership from across the northeast area of Alberta. While initially focused on information gathering and sharing, it soon branched into providing services. The decision to move from a volunteer committee structure to the formation of a society (Lakeland FASD Society) and to become a direct provider of services was due to the limited availability of contracting options in the region. An executive director was hired in 2001, and the Lakeland Centre for FASD began developing and delivering services to clients throughout the region.

Wirzba and Stonehocker11 found in their comparison of these two network models (partnership and incorporated society) that they have more elements in common than differences that distinguish them. They noted that both groups maintained the belief that their chosen model was inherently better for serving their clients with FASD. However, the researchers concluded that both network models are valid

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within their own contexts and are potentially effective or ineffective for reasons that are not specific to the model itself.

It is noteworthy, nevertheless, that Wirzba and Stonehocker11 found that Lakeland formed a society to give it legal status and fund development ability. The researchers noted that the South Alberta Network was able to function without a society, but is currently in the process of forming a society to have legal status and fund development ability. It is also interesting to note that the funding model developed and used by the FASD-CMC gives a preferred score to Service Networks that are constituted as a legal entity over the partnership model (see the Section 5 of this report).

The Service Network focus group meetings conduced by Drs. Poth and Pei with the ACCERT Evaluation Teamj found that a major shift has occurred in the Alberta FASD Service Networks, from being grassroots, community-based organizations to more business-oriented funding agencies.7 Focus group participants reported that this structural change has led to challenges balancing the needs of the community and individuals with FASD served by the Networks with the requirements and responsibilities set out by the FASD-CMC.7

The KPMG Report10 found that the sentiment of the Service Networks towards the Operating Grant Policies is generally positive, and felt the guidelines helped them to have credibility and legitimacy in their planning and decision-making, motivating them to become more strategic with respect to assembling their Network Leadership Teams to avoid conflicts of interest. However, the KPMG report indicated that the Service Networks generally hold the view that the guidelines have significantly increased the administrative expectations, and some felt that these expectations were incongruent with the level of funding provided by the Service Network Program. Concern was also expressed that the limitations placed on the composition of Network Leadership Teams may cause difficulties in some Service Networks where the number of people with the appropriate skill sets, interests, and level of commitment, is limited in the region served. Some Service Networks reported that they experienced gaps in service provision as a result of the guidelines.

While the Service Networks were supportive of the review process itself, indicating that it helped them identify areas that need strengthening, some felt it was poorly timed and overly time consuming, and that a more streamlined, recurring review process would help promote operational improvements and quality assurance. It should be noted, however, that in March 2010, Human Services provided grants to each of the Service Networks to conduct this evaluation process, and the leadership provided by KPMG enabled the identification, collection and reporting of consistent data across Service Networks, which was rolled up and presented as part of the Provincial Evaluation of the Service Network Program.9

Vertical linkages: Mapping network accountability

The accountability relationshipsbetween the FASD-CMC, provincial and federal ministries, and community-based Service Networks are mapped in Figure 1. The map is from the Operating Grant Polices.12 It states in the guidelines that, at the Service Network level, communities are responsible for determining membership and partnerships as long as they are organized in a way that follows this

j Analysis in this report of the information collected from focus group sessions conducted by the ACCERT is a combination of information reported in the July 2012 report by Drs. Poth and Pei and information provided by ACCERT Team member David St. Arnault from documents sent to the consultant on July 31, 2012.

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general organizational structure and provide the required Service Network roles. It also states that this map is not intended to represent patterns of communication within the Service Network program.

Figure 1: Map of Service Network organizational structure and accountability relationships

Strengthening vertical linkages

In network governance, “bridging” organizations, groups and individuals help spread authority and responsibility for decision-making widely, sharing it within and among different levels of government, non-government organizations, businesses, and individuals.4 These bridges support accountability of relationships by providing critical links between actors working at different geographic scales and institutional levels. The Service Network Program Operating Grant Policies12 identify several key actors that assume this critical role (see Table 2 below):

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Table 2: Bridging organizations and individuals supporting Service Network management and accountability

Geographic Scale Bridge Role

National - Government of Canada:Health Canada, First Nations and Inuit

Health Branch; and the Public Health Agency of Canada.

FSCD-CMC

Provincial Program Coordinator

Provide the Service Network Program with oversight and support in the areas of planning, funding, accountability, communications and Network evaluation, improvement, and development.

Provincial – Government of Alberta ministries (Human Services; Health; Aboriginal Relations; Education; Enterprise and Advanced Education; Justice and Solicitor General) and other agencies and organization (Alberta Health Services; Alberta Gaming and Liquor Commission; Safe Communities Secretariat) and representation from

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other GOA strategic initiatives (including Homelessness; Safe Communities; Addictions and Mental Health) and external consultants.

Regional – 12 regional FASD Service Networks

Provincial Network Membership Team

Primary venue for coordination and communication between Service Networks, and between the FASD-CMC and the Service Network Program. The team acts as liaison between their respective Service Networks and the Provincial Coordinator, and between their respective Networks and other Networks by providing feedback, bridging communications between the local and provincial scales, sharing information, learnings, experiences and knowledge.

Local – Each regional network and their community-based partners and clientele.

Network Leadership Teams

or Board of Directors

Operational staff (network coordinator)

Network Banker

Each Service Network receives and distributes funding from the FASD-CMC to provide a continuum of coordinated services in theservice categories defined by the FASD-CMC. Service Networks are designed as community-based and community-led partnerships They are to reflect local priorities, resources, and needs while at the same time demonstrating alignment with provincial objectives and strategic direction as recommended by the FASD-CMC and Alberta’s 10 Year FASD Strategic Plan.

If the Service Network is not a legal entity, a Network Banker (a community partner) receives, holds and disburses Service Network funds as directed by the Leadership Team in compliance with requirements established by the Ministry of Human Services and the Network Leadership Team.

Key Findings

The focus group sessions conducted by Poth and Pei7 identified key structural changes that have impacted the strength of the vertical linkages and their corresponding relationships. At the provincial scale these include:

A perceived shift in the role of the FASD-CMC from a decision-making body to more of a coordinating body, which has resulted in decreased channels of communication with upper levels of government and increased delays in decision making.

Fewer internal “champions” within government to advocate for the issue of FASD. Diminished standing of the FASD issue due to the creation of the Ministry of Human Services, which was

perceived to result in increasing competition with other health and social issues located within the new ministry.

While the recent elevation of FASD to a high profile government priority may address some of these concerns, these challenges speak to the long-term sustainability of the Service Network Program, and are commented on in more detail in Section 6 of this report. As described in the brief history of the development of the Service Network

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Program (Section 4.1), even with the highest levels of government support and approval, funding is never guaranteed. Government structures are not always stable; changing government priorities and re-organizations are common. Comments by focus group participants illustrate the importance of building relationships with strong vertical and horizontal linkages, and the value of open lines of communications to help manage change, particularly regarding the role of the FASD-CMC and its authority, in order to maintain the trust of network partners and to manage expectations regarding the ups and downs of government funding and support.

Network structure: Participation and maintenance

Like network management and accountability, hands-on tools are also needed to support network participation and maintenance, which include collaboration, research and evaluation, and knowledge mobilization.These tools support stakeholder participation, where autonomous actors seek to influence the policy agenda and negotiate policy outcomes, as well as network maintenance activities that build relationships and trust, and promote information and idea exchange.

Network participation and maintenance occurs across geographic scales and disciplines, and according to the FASD 10 Year Strategic Plan, were to be focused in these four areas of activity: Strategic Planning, Research and Evaluation, Training and Education, and Stakeholder Engagement. Each of these activities was carefully designed and framed in the Strategic Plan with definitions, outcomes, and strategies.However, the horizontal organizational structure developed to date by the FASD-CMC does not directly align with these activities.

Horizontal linkages: Mapping network participation

Figure 2 below maps the Service Network Program’s network participation and maintenance relationships as they are currently organized. These relationships are represented in the form of a Venn diagram to illustrate the relational nature of these activities as they cross geographic boundaries and disciplines. Figure 2 is not intended to represent patterns of accountability within the Service Network program.

Figure 2: Map of horizontal linkages supporting Service Network participation and maintenance

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* Two of the Service Networks (Lakeland FASD Network and MacKenzie Regional FASD Network) provide services directly to their region, so there is no third circle of “funded Service Providers” at the local scale in the case of these two Service Networks.

Strengthening horizontal linkages

An examination of the current horizontal linkages provided by the bridging organizations and groups (see Table 3 below) suggests that strategic planning occurs at different scales, and is an activity conducted by the FASD-CMC and the Service Networks without the support of a subcommittee. The FASD-CMC engages stakeholders in strategic planning at the provincial scale, while the Service Networks engage their stakeholders in needs assessment at the local scale. These two activities, strategic planning and needs assessment, are bridged by the Operational Program Review subcommittee through the Service Networks’ business planning and grant application processes.

To address other key areas of activity, the FASD-CMC established two other subcommittees to act as bridging groups. These subcommittees, however, only roughly correspond to the activities identified in the FASD 10 Year Strategic Plan. An evaluation of the efficacy of the subcommittees did not form part of the Year 5 Evaluation Project (see Table 3 below). Recommendations to strengthen horizontal linkages are made in Section 8 of this report.

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Table 3: Bridging organizations and groups that support Service Network participation and maintenance

Activity Local Needs Assessment and Strategic Planning

Operational Program Review

Data Collection Communications

Bridging organizations and groups

FASD-CMC 12 Alberta FASD

Service Networks

Councils (e.g. PCAP Council; Supports and Services Council)

FASD-CMC Operational Program Review Subcommittee

FASD-CMCData Collection Subcommittee

FASD-CMCCommunications subcommittee

Network Communications Subcommittee

Role

FASD-CMC: Involves key stakeholders in the strategic planning process and in discussions regarding both policy and practice, and engages with both the Service Networks and with Councils.

Service Networks: Implement formal, ongoing needs assessment involving regional stakeholders and the broad community with an interest in FASD to inform their annual Business Plans and Grant Applications.Councils: Share knowledge and information pertinent to their areas of expertise.

The members of the subcommittee evaluate, monitor, and make recommendations on Network Business Plans and Grant Applications, based on funding guidelines developed for the Service Networks.

The subcommittee is also responsible for feeding information from Network Business Plans and Grant Applications into the strategic planning efforts of the FASD-CMC.

This subcommittee is to recommend data collection and data management approaches to support oversight of the FASD Service Network Program, including common definitions for measures, common collection methodologies, and common approaches to reporting, and timelines.

This subcommittee is to establish and maintain a coordinated approach by developing and implementing an annual Communications Plan with Service Networks, external stakeholders, and partnering Ministries.

The Network Communications Subcommitteeworks closely with the Provincial Network Leadership Team to determine the best methods for implementing the FASD- SNP Communications Plan and to develop strategies for improving communications and resource sharing between the Service Networks.

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Key Findings

Over the past five years (2006-2011), both the FASD-CMC and the Service Networks have invested considerable time and resources into developing the hands-on management tools needed to support accountability within the Service Network Program network governance model. However, the same investments in the development of hands-on tools to support and strengthen the horizontal linkages that support Service Network participation and maintenance have not yet been made.

Collaboration

Focus group sessions conducted with members of the FASD-CMC and FASD Service Networks by Poth and Pei7 provide evidence regarding the efficacy of collaborative efforts made within the Service Network Program. Participants in all focus groups identified that there are two key elements needed to support successful collaboration: 1) passion stakeholders bring to the issue of FASD that infuses their work, and 2) determination of stakeholders to build strong relationships, creating closeness and cohesiveness across levels, disciplines, and agencies. This combination of passion and determination defines the way FASD stakeholders commit to working together to meet shared goals.

The focus groups also revealed that participants clearly recognize the benefits of collaboration, which they identified as: more efficient use of funding to support projects and services, responsiveness to the needs of their communities, development of a common understanding informed by FASD, the practice of consensus-based decision-making (in approach, if not in practice), and the focus on addressing identified gaps in program and service delivery. Participants in the Service Network focus groups spoke about the importance of knowing their communities, communicating regularly with one another, and building partnerships between programs within Service Networks.7 While acknowledging the large amount of time and effort involved in implementing a collaborative approach, Service Network participants take pride in their ability to connect people affected by FASD with the agencies and the support they need. The Provincial Evaluation Report on the Alberta FASD Service Networks9 confirms that service providers and community partners believe that the Service Networks have positively influenced the level of communications, interactions and collaboration building among organizations, and that Service Networks play a role in coordinating and improving access to services.

The FASD-CMC focus group participants believe there is strong collaboration within the group and between the FASD-CMC and its stakeholders of Service Networks, service providers, and individuals affected by FASD. They believe their communications has been open and transparent and has helped create common understanding.7 Focus group participants from the Service Networks, however,did not always share this perception. Some Service Network participants reported that they view the FASD-CMC as a funding agent that is at times disconnected from them and what is happening on the ground. They want to see more collaboration and communication with FASD-CMC, which they believe would result in improved understanding regarding their funding, programming, and service delivery needs.

While focus group participants recognized that the FASD 10 Year Strategic Plan has broadened stakeholder involvement and participation in the planning and delivery of FASD programs, they want to see this commitment to collaboration and knowledge mobilization expanded, fostered, and supported. Identified barriers to effective collaboration include: working across ministries, with each ministry having different funding and reporting mechanisms; changing expectations of government leadership;

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the large amount of paperwork due to administrative tasks and resulting from monitoring and evaluation requirements; and the lack of job security and staff turnover.

FASD-CMC focus group participants reported increasing workloads and responsibilities, with collaboration left as “work off the side of their desk” rather than included in their job description.7

Local needs assessment and strategic planning

The Service Network Program Provincial Evaluation Report9 found that 10 of the 12 Service Networks had conducted formal needs assessments since the inception of the Service Network Program in 2007: “Almost all Networks indicated highly collaborative approaches to their community needs assessment as well as ongoing evaluation of changing needs.” The Service Networks reported involving stakeholders with direct ties to the Service Network and to the broad community with an interest in FASD in their region (such as parents/caregivers, and non-funded service providers), which informed their business planning and grant application processes. Four of the Service Networks reported conducting their business planning in a collaborative manner that included Service Network stakeholders and broader community members. The remaining Service Networks reported their plans were completed by the Service Network coordinator, or in collaboration with the Network Leadership Team members.9

A participant in the FASD-CMC focus group described how stakeholder involvement in strategic planning occurs through their input into each Service Network’s business plan: “As part of the Network funding process, the Service Networks themselves engage in broad strategic planning with all the stakeholders and that information gets fed up through their business plans to this table (p.140).”7

Poth and Pei7 found that strategic planning by the Service Networks is primarily informed by internal research and evaluation of their own programs and services to assess the needs and service gaps in their communities. Service Networks rely on their own capacity to conduct this type of local research to help them in their decision-making and planning for the future. They also use the FASD-CMC web-based Learning Series, as well as informal communications among the Service Networks to inform their planning processes. Many Service Network members expressed frustration with their overreliance on internally conducted research to inform strategic planning, which they believe occurs because of the lack of funding allocated to the Service Networks for external research and evaluation.

The FASD-CMC focus group participants reported that the FASD-CMC invites key stakeholders to participate in their strategic planning processes. They reported having close working relationships with many researchers from different academic institutions and research networks, involving them in discussions regarding both practice and policy. Researchers participate both formally as members of subcommittees and informally through discussions and regular presentations of results from local research and evaluations.

In addition, the FASD-CMC makes itself accessible to stakeholders through the Committee’s involvement in conferences, presentations, and attendance at meetings. The FASD-CMC also created councils, such as the PCAP Council and the Supports (and Services) Council, as a mechanism to involve stakeholders in the strategic planning process.7

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A “Proposal Review subcommittee” (see Section 5 for details) is responsible for reviewing Network Business Plans and Grant applications. However, a formal evaluation of the work of this subcommittee did not form part of the Year 5 Evaluation project.

Communications

Traditional communications, as a function within government, has two specific purposes. The first is related to messaging and the dissemination of information to support government policies and positions. The second is related to issues management and the government’s need to respond to matters of concern regarding government policy and practice. Traditional government communications is a function that is carefully managed and is not generally ceded to autonomous actors.

Communications has a very different purpose when it is used to support collaboration. Its purpose here is to build trust, mutual respect, shared understanding and a shared commitment to and responsibility for achieving common goals, leading to a high degree of interdependence.5 Communications for this purpose relies heavily on face-to-face dialogue, which is very time and resource intensive.

The FASD-CMC annual Strategic and Operational Plan includes a communications plan that is to be reviewed and updated annually. It is intended as an ongoing, working document to identify a broad range of activities during the implementation of the Strategic Plan. Its purpose is both to inform and engage stakeholders: “The overall approach to communications is to encourage awareness of and engagement by stakeholders and Albertans in FASD initiatives as outlined in the Strategic Plan achieved through coordinated, consistent messaging by the partners and establishing the FASD Service Networks as key contacts for local information and resources about FASD.”

The format and focus of the communications plan is based on a traditional approach to government communications. A formal evaluation of the efficacy of this approach to communications and the activities of the communications subcommittee did not form part of the Year 5 Evaluation project. Participants in the focus group meetings conducted by Poth and Pei7 identified three primary mechanisms that support their collaboration activities, all of which rely on face-to-face contact: meetings, video conferencing, and conferences. Participants suggested that it would be beneficial for those involved in strategic planning to have more opportunities to meet face-to-face with stakeholders to share information and discuss research and best practices. Participants in the FASD-CMC focus group indicate that the FASD-CMC is actively involved in conferences, presentations, and attending Service Network meetings.7

Video conferencing was identified as a useful tool for supporting face-to-face meetings among stakeholders, and helpful in overcoming geographic barriers and building relationships. According to the KPMG Provincial Network Evaluation, the Service Network program coordinators reported that the increased availability of video conferencing equipment was helpful in facilitating rural communications and participating in meetings. However, the use of video conferencing was inconsistent across Service Networks due to technical challenges, availability, and financial constraints. It is also interesting to note that while video conferencing was identified as helpful for collaboration purposes, it was not considered as a useful means to access research.7

Knowledge mobilization

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A common theme arising from the research of Poth and Pei7 was the lack of regular communications about research and best practices between the FASD-CMC and the Service Networks. At the same time, participants noted that they have been able to collaborate and communicate with a large number of people as a result of the FASD-CMC’s efforts to disseminate information. Furthermore they identified the strong connection between collaboration and effective research dissemination activities, which involves building relationships between stakeholders and researchers and/or clinicians. 7 These relationships resulted in researchers participating in conferences, presenting in workshops and online learning series, and attending other meetings to share research findings and best practices.

Conferences were identified as a crucial activity that allows most stakeholders (such as policy makers, service providers, program coordinators, clients, and families) to meet face-to-face, share information and learn about general FASD research findings and best practices from scientific experts, researchers and clinicians. The FASD-CMC focus group participants acknowledged the importance of conferences, and of investing effort into hosting local and provincial meetings. However, they reported that changes in leadership have led to a reduction in disseminating best practices for some FASD-CMC members. A lack of resources available at the regional level (such as funding for travel and worker support during absences) often impedes workers’ ability to attend conferences.

The FASD-CMC has increased access to FASD research and best practices at local and provincial levels through its involvement in the planning of FASD conferences. Service Networks believe that they have enhanced access to FASD related training provided by the FASD-CMC for Network Leadership Team members, Network coordinators, funded service providers, and community partners/Service Network members. However, the Provincial Evaluation Report,9 in their assessment of outcomes related to the research and evaluation, and training and education pillars of the Strategic Plan, revealed inconsistency across Service Networks in regards to these activities and a lack of clarity regarding the expected role of the Networks in these areas. They believe there is an opportunity to use the Service Networks more effectively and efficiently in these areas, not only as community coordinators, but as knowledge brokers promoting the flow of information in and out of the community, between front-line agencies and those working to build deeper understanding of FASD and its management.9

Data collection

The Provincial Evaluation Report on the Alberta FASD Service Networks9 identified that one of the strengths of their evaluation process is that the Networks collaborated to develop and deploy consistent data collection methods, which resulted in the ability to provide provincial data for the Service Network Program Year 5 Evaluation project. Most of the data collection tools were largely developed from scratch. The report also indicated that over half the Service Networks participate in research and/or evaluation activities despite the fact that Networks are not able to use Service Network Program funding for research and evaluation projects and suggested that there is a lack of clarity regarding the expected role of Service Networks in the areas of research and evaluation, training and education, and a lack of consistency across Service Networks in regard to these activities.9

In the development of this report, the consultant discussed the activities of the data collection subcommittee with public managers working on the Service Network Program. It was revealed that this particular subcommittee had worked to develop performance measures for the program, and had convened and reconvened over the years to revisit and revise these measures. However, these efforts

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were largely viewed as unsuccessful. A formal evaluation of the work of Data Collection subcommittee did not form part of the Year 5 Evaluation project.

Funding

As described by Poth and Pei in their history of the development of the FASD-CMC,7 the evolution of the Service Network Program has been driven largely by changing GOA priorities. When the FASD 10 Year Strategic Plan (2007-2017) was first approved by GOA’s Standing Policy Committee on Health and Community Living in 2006, the FASD-CMC was to receive and re-distribute funds received from Treasury Board to each of the partnering GOA ministries. However, receiving only half of the original funding request in 2006 led to the decision by the FASD-CMC to transform the governance structure from a traditional government led and implemented strategy to a network governance model, where the FASD initiative remains government led but is implemented at the regional scale by community-led Service Networks.

Discussion with public managers and review of government documents indicate that government funding has consistently fallen short of the amount requested in the FASD 10 Year Strategic Plan in 2006 (in millions of dollars):

Table 4: Annual funding allocation received by FASD-CMC for the Service Network Program

Year 2006/2007

2007/2008

2008/2009

2009/2010

2010/2011

2011/2012

2012/2013

2013/2014

2014/2015

2015/2016

Requested 8m* 16.9 25.350 33.8 38.025 42.025 42.250 42.250 42.250Received 4.225m 8.45 16.9 16.9 16.9 16.9

* The requested amount was identified in the Poth and Pei report.7 The rest of the figures are based on government documents made available to the consultant. There was no source provided for the original request for funding in 2007/2008; only the amount received was identified in the documents reviewed.

Poth and Pei7 note that although funding for the Service Network Program has not increased since 2008/2009 and remains far short of the cap of $42.250 million that was to have been received by 2012/2013, the original outcomes listed in the Strategic Plan remain unchanged.

Service Network Program funding modelGovernment documents were made available to the consultant regarding the evolution of the funding model developed to support funding allocation to the Service Networks. The documents indicate that nine reviewers who are part of the “Proposal Review subcommittee” (which now known as the Operational Program Review Subcommittee) assess Service Network funding applications.

When funding was first allocated to the Service Networks in 2006, the FASD-CMC developed an allocation system based on two types of funding: base funding (with a maximum of $250,000 available per Service Network) and discretionary funding. Discretionary funding was based on a rating scale that considered three factors: population level in the region served (catchment area), service gap level, and the ability of the Service Network to expand services. The rating scale was weighted to reflect the philosophy that priority was to be given to fill service gaps. Together, the base funding and

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discretionary funding were added together and calculated as a percentage of total funding available, creating a “funding formula” used to calculate Service Network allocations, beginning in 2006.

When funding to the Service Network Program was increased in 2008, a new matrix was developed to distribute the additional funding received. This matrix is to be used to review the allocation of all incidents of additional funding received, and is to incorporate the funding formula described above.

The matrix for additional funding identifies and scores criteria that are aligned with the KPMG evaluation process for the purposes of establishing a “Capacity/Risk Index.” The criteria scored to develop this index include: network model (legal entity or partnership, with legal entity weighted higher); stage of development; services provided in the three strategy areas of prevention, assessment/ diagnosis, and supports for individuals/ caregivers; performance measures based on meeting or exceeding targets for all strategies; changes required to address identified challenges; alignment with the Operating Grant Policies guidelines (excellent, very good, and developmental); changes required to improve alignment with the guidelines; unexpended funds from the previous year; and changes required to address any funding challenges.

Total scores for each Service Network were organized into a “Capacity/Risk Index” that divides the scores into four categories. Those Service Networks that ranked highest (with the lowest number of points) were determined to have a high degree of capacity to expand services with no concerns. Service Networks ranked second highest were determined to have capacity with minor concerns. Service Networks ranked third highest were determined to have capacity with moderate concerns, and Service Networks ranked fourth highest were determined to have no capacity to expand services.

The documents reviewed suggest that the funding formula (base + discretionary) plus the additional funding matrix are used to calculate the allocation for each Service Network. Service Networks with a high degree of capacity can use all funding received to support and/or expand their services. Those Service Networks with no capacity, or with minor or moderate capacity concerns, are directed to use the “additional” funding portion to improve their alignment with the Service Network Program Operating Grant Policies first before expanding services.

Key findings

The findings of the Service Network Program Provincial Evaluation Report9 provide evidence of the efficacy of the adaptation made to shift the governance model from a traditional government led and implemented initiative to a network governance model. The evaluation found that Service Network Program funding has resulted in new programs and services being offered throughout the province. Service Networks, funded service providers, and community partners reported that Service Network funds are being used to provide new programs and services, expand the delivery of services available, and in some cases provide new services in new geographic areas. They all generally agreed that the Service Networks have played a role in coordination of services and improving access to services, and that the Service Networks have positively influenced the level of communications, interactions, and collaboration among partners.

The consultant’s review of the funding model suggests that it is well aligned with the FASD-CMC’s Operating Guide Policies guidelines and the evaluation model developed by KPMG. In addition, the use of additional funding received by the Service Networks to either expand services or to build network

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governance/management capacity suggests that key recommendations made by KPMG10 are being implemented. These include introducing a formal periodic review process and promoting ongoing Network-specific development in core functional areas (as illustrated by the design and implementation of the matrix developed to support the allocation of additional funding); and introducing the concept of “earned autonomy” (as illustrated by the Capacity/Risk Index and direction to use additional monies received to expand services or, if required, to invest in the development of their governance/management capacity, as directed by the FASD-CMC).

However, the Service Network focus group participants repeatedly identified inconsistent and time-limited funding as both a challenge and a frustration, which impacts the Service Networks’ abilities to maintain increasing levels of programs and service and to hire and retain effective frontline employees. When asked how the FASD-CMC could be more effective in supporting the Service Networks, one participant suggested that it should “not [provide] discretionary funding but sustainable funding…that’s got to be number one.” Participants in all focus groups emphasized the need for a three-year funding model, which would enable more concrete planning and reliable delivery of services (p.136).7

Service Networks also receive project-specific funding from multiple GOA ministries. Leveraging funding from different ministries necessitates separate proposals, each with different project management, accounting and reporting requirements. Focus group participants identified that the lack of coordinated and consist accountability and reporting requirements among GOA ministries results in an even more onerous administrative load for the Service Networks. As a result, the Service Network Program funding model is viewed by focus group participants as cumbersome.

In the FASD-CMC focus groups, participants identified the lack of funding for non-direct client service delivery work (time spent collaborating with other service providers) as an issue. The financial costs of organizing group outputs related to network maintenance (collaboration, coordination, communications and knowledge mobilization) are generally not acknowledged in key documents such as the annual FASD-CMC Strategic and Operational Plan, unless they are related to the costs of producing a specific event, such as the annual conference. Costs of collaborating with multiple government and community partners in order to generate collaborative outputs such as strategic plans, funding models, and issues that are impacting multiple partners, such as labour shortages and aligning with other GOA initiatives, are identified as “cost neutral.” As reported by Poth and Pei,7(p.41) this approach, however, does not acknowledge or account for the time spent producing these outputs, leaving workers feeling that these outputs are of secondary importance, achieved “off the side of their desks” rather than being included in their job descriptions.

Sustainability

Why does network governance sometimes fail? Sørensen and Torfing2 suggest that it fails because network actors are either protecting their authority and/or their autonomy. A similar observation was made by Wirzba and Stonehocker 11(p. 8-9) in their comparison of the two types of network models (partnership and society): “If partners at the table or in the community are protecting their own turf and not looking past their own agency’s service landscape, neither model will reach its full service potential and clients will go underserved.”

Sørensen and Torfing2(p.253) suggest a second reason is because of the failure to provide “the right kind of support at the right dosage at the right time.” To realize the full potential of network governance, public authorities (government ministries and agencies) must be willing to cede responsibility for strategic

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governance to those directly involved in the delivery of network activities, and public managers must know how to negotiate and deploy both hands-off and hands-on governance tools, and to invest in their development. The evidence from the Service Network Program evaluation project suggests that there is a potential third reason for network failure, which would be the inability of Service Network partners to come to a shared understanding of what success means and how it is measured. The Provincial Evaluation Report9 identified that the most significant limitation of their evaluation was that the outcomes intended for measurement were often poorly defined. Wirzba and Stonehocker11 identified an even more serious concern, that Alberta’s FASD 10 Year Strategic Plan defined outcomes and timelines with indicators of success considered by FASD service providers to be unrealistic for clients with FASD. The researchers point to the gap between societal/funder expectations for success, and the ability of those dealing with permanent brain damage to achieve that success, a situation that the FASD service profession has long struggled with.

Results-based budgeting

The challenge to come to a shared understanding of provincial expectations for success is increasing. Concerns were raised during the Year 5 Evaluation project meeting (August 2, 2012) that GOA was moving towards implementing results-based budgeting, which will evaluate performance based on the relationship between project funding levels and expected results. Collaboration is central to this type of budgeting process, where government will consult with stakeholders both internal and external to the project to determine if it aligns with government priorities, whether other ministries or agencies (private, public and/or non-profit) are offering similar or competing programs or services, and if the programs/services are achieving desired outcomes. The concern among Service Network Program stakeholders is that the there is no shared understanding among Service Network partners regarding what those outcomes are and how they should be measured; in other words, what success looks like and how it is measured.

Like strategic planning, sustainability of the Service Network Program post 2017 is a conversation that needs to engage all Service Network partners in order to develop a shared understanding of both what success for clients with FASD means and how it is to be measured, and what success of the Service Network Program means and how it is measured. Included in this discussion should be the expected roles and responsibilities of each partner for achieving this success. This shared understanding should drive the design, framing and funding of any future plan, and will determine what it means to be sustainable.

Defining outcomes

During the Year 5 Evaluation project meeting (August 2, 2012), a research initiative developed by Rutman et al.13was presented that mapped FASD outcomes for the purpose of evaluation. It was suggested at this meeting, and in subsequent discussions with Dr. Pei and Dr. Rutman and her associates, that this map of FASD outcomes be used to support future discussions of this important topic.

Conclusions

Network model: Governance and structure

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Through the lens of the regulation of self-regulation,2 this report examined how government cedes accountability to autonomous, self-regulating actors in order to enable members of the network to collaborate to achieve common goals, and found the following:

Network design and framing: The Service Network Program is built on a strong foundation established by the FASD 10 Year Strategic Plan (2007-2017). The decision to adopt a network governance model was an adaptive management response to funding constraints, rather than the expression of a core belief that a collaborative approach is the most appropriate way to achieve desired outcomes. Once the FASD-CMC made the decision to shift from a traditional hierarchical governance model (where funding received from Treasury Board would be redistributed to government ministries responsible for delivering programs and services) to a network governance model (where funding received is redistributed to regional, community-based organizations responsible for delivering programs and services), the FASD-CMC began to develop the hands-on tools required to manage accountability relationships between network partners.

The government’s new commitment to results-based budgeting, which evaluates performance based on the relationship between project funding levels and expected results, places more pressure on the Service Network Program to clarify what success means in relation to the FASD context. This requires shared understanding among all Service Network partners regarding how success will be measured, which requires the identification of clearly defined and measurable outcomes for both clients (people affected by FASD) and the Service Network Program project.

Network management and accountability: The Service Network Program has been successful in developing the hands-on tools required to manage network operations and accountability at both the local and provincial scales. These include: (1) the FASD-CMC Strategic and Operational Plan, developed annually to guide the work of the FASD-CMC; (2) Service Network Program Operating Grant Policies; (3) the Network Business Plans and Grant Applications prepared annually by the Service Networks, along with quarterly and annual reports; (4) Network evaluation and data collection processes reviewing Service Network governance and operational processes; and (5) the Service Network Program funding model.

Through the lens of vertical and horizontal linkages supported by bridging organizations, groups and individuals,4 this examination mapped the linkages and found the following:

Vertical linkages supporting accountability relationships: The bridging organizations (including the FASD-CMC, Provincial Network Membership Team, the Network Leadership Teams/Boards and the Network banker) that support management and accountability relationships are well established, with clearly defined roles, responsibilities. While the Networks vary significantly in their development with respect to network governance and operational processes, the hands-on tools are in place to support continuous improvement.

Network participation and maintenance: While tremendous efforts have been made to collaborate, these efforts have largely been supported by the passion and determination of those working in the Service Network Program. Service Networks believe that they have positively influenced the levels of communications, interactions and collaboration building among organizations, and that Service Networks play a role in coordinating and improving access to services. The evidence suggests that service providers and clients agree with this self-assessment. The FASD-CMC believes it has demonstrated a strong commitment to a collaborative approach. However, Service Networks want to

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see more collaboration and communication with FASD-CMC, which they believe would result in improved understanding regarding their funding, programming, and service delivery needs.

Horizontal linkages supporting participation and maintenance: The bridging organizations/groups established to support horizontal linkages within the Service Network Program have largely taken the form of subcommittees responsible for particular activities. Although the FASD 10 Year Strategic Plan clearly identifies the four key activities required to support collaboration and knowledge mobilization (Strategic Planning; Research and Evaluation; Training and Education; and Stakeholder Engagement), the three subcommittees struck to deliver these activities only roughly correspond to the outcomes and strategies identified in the Plan. As a result, some collaborative efforts have been more successful than others.

Local needs assessment and strategic planning, driven by the strongest bridging organizations (FASD-CMC and the 12 Network Leadership Team/Boards) have had the most success. The Operational Program Review subcommittee is well supported by hands-on tools (Operating Grant Policies, funding model, Network business plans and grant applications processes, an evaluation framework and data collections methodologies) and is well positioned to deliver its activities and to support continuous improvement in the area of network operations and funding.

The other subcommittees have not been well positioned to succeed. While there have been successful efforts made to mobilize knowledge through the annual FASD conferences, the development of a web-based Learning Series, and other learning tools, a common theme arising from the evidence has been the lack of communications about current research and best practices. The traditional communications plan that forms part of the Operating Guide Policies is not well suited to supporting and developing collaboration and knowledge mobilization, and the Data Collection subcommittee has had difficulty delivering suitable hands-on tools to guide research and evaluation.

Funding Model

While funding constraints have driven significant adaptations in the Service Network Program governance, service delivery, and funding models, the strong effort to develop the management capacity of the Service Networks to become effective service delivery and/or fund granting agencies has set the stage for continuous improvement of management and accountability functions. However, the funding model does not address the following key issues:

Funding is allocated to the Service Networks annually, creating uncertainty and an inability to support long-term planning.

The Service Network Program budgeting process does not separately recognize costs associated with maintaining the Service Network, leaving collaboration, research and evaluation, and knowledge mobilization under-resourced, and leaving workers feeling that these outputs are not a priority.

The FASD funding model does not recognize the need to build the capacity of Service Networks to actively participate as partners in research and evaluation, which heavily relies on their participation, and often requires intensive data collection.

Sustainability

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With five years of the FASD 10 Year Strategic Plan completed, there is increasing pressure to consider the future sustainability of this initiative. With the new demands of results-based budgeting, there is an urgent need to begin a strategic dialogue with Service Network partners regarding what success means in relation to the Service Network Program, how it is measured, and the expectations of Service Network partners to achieve this success. This strategic conversation will drive the re-design, framing and funding of the next five years, and any future Strategic Plan post 2017, and will determine what sustainability means within the FASD context.

RecommendationsThe recommendations in this report build on the excellent work and recommendations proposed in the following Year 5 Evaluation project reports:

Alberta FASD Service Networks (Provincial Evaluation Report, March 2012) KPMG (FASD Service Networks Program Guideline Review, August 2011) Poth and Pei (Summary of the Year 5 Evaluation Project, ACCERT, July 2012) Wirzba and Stonehocker (Lakeland and South Alberta FASD Network Governance Comparison,

March 2012)

Network governance and structure

Recommendation #1: Clarify the design and framing of the FASD 10 Year Strategic Plan (2007-2017) by clearly defining measurable client and project outcomes that describe Government of Alberta expectations of success for those living with FASD, and for the Service Network Program and its Service Network partners.

Recommendation#2: Strengthen horizontal linkages supporting Service Network participation and maintenance by restructuringthe Service Network Program subcommittees to better reflect the key activities, outcomes and strategies identified in the FASD 10 Year Strategic Plan.

Following is a list of five suggested subcommittees: Strategic planning subcommittee: to formalize and extend strategic dialogue into key areas of

concern where a shared understanding among Service Network partners is essential (such as identifying measurable outcomes and defining sustainability).

Research and evaluation subcommittee: to build relationships between researchers and clinicians, program coordinators, and service providers in order to support the development of province-wide evaluation frameworks for both service and non-serve areas of the Service Network Program, developing the hands-on tools to support consistent data collection and sharing of research results.

Knowledge mobilization subcommittee: to support training and education for all those involved with FASD, including policy makers, researchers, clinicians, service providers, program coordinators, clients, and families in order to support the dissemination of research and leading practices through:

oFace-to-face activities such as conferences, forums on leading practices, practical workshops for service providers, caregivers, and families, and other types of formal and informal face-to-face activities.

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oThe development of online resources such as databases, professional development and other learning tools, listservs, and an online repository of information on hands-on tools such as templates, forms, and example documents.

Collaboration subcommittee: to support stakeholder engagement through the development of hands-on tools that promote the development of strategic and collaborative competencies needed to build relationships, shared understanding and trust, including:

oA Collaboration Guide to develop collaborative competencies (building on Alberta’s approach to collaborative practices, with a focus on the FASD context).

oA stakeholder engagement plan that identifies and links FASD stakeholders, with the purpose of building trust, shared understanding, and shared commitment to and responsibility for achieving common goals.

oA collaboration evaluation framework that builds on the work of Poth and Pei7 to support consistent data collection processes.

Operational Program Review subcommittee: to continue its role in supporting and developing governance and operational processes, Business Plan and Grant Application review, and the continuous improvement and refinement of the funding model and the streamlining of reporting requirements.

Funding

Recommendation #3: Provide stability and support the Service Networks’ long term planning efforts by allocating operational funding on a three-year cycle.

Use the funding formula already developed to calculate the percentage of annual operating funding allocated to each Service Network, allocate these on a three year cycle, leaving any additional funding provided by GOA to be calculated and allocated annually based on the Capacity/Risk Index assessment tool.

Recommendation #4: Budget for collaboration, research and evaluation, and knowledge mobilization separately as participation and maintenance, which are core responsibilities of bridging organizations and are needed to sustain Service Network operations.

Budgeting for participation and maintenance costs distinct from administrative costs is vital to the success of the Service Network Program network governance model, and supports public innovation in the delivery of FASD programs and services. Budgets should include resources to:

Fund access to training and education opportunities for FASD Service Network partners, service providers/clinicians, and family/caregivers.

Fund Service Networks to actively participate as partners in research and evaluation, recognizing their central role in providing consistent, ongoing data collection.

Allocate sufficient staff time to support collaboration and “bridging” responsibilities, as these are priorities for those working within a network governance model.

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Sustainability

Recommendation #5: Develop a shared understanding among Service Network partners of what sustainability means within the context of FASD, for clients affected by FASD and for the Service Network Program, as well as the roles and responsibilities of all those working collaboratively to achieve sustainability.

Evaluation Questions for Year 7 and Year 10

Evaluation Questions for Year 7

Design and framing of the 10 Year Strategic Plan: Evaluate the collaborative strategic planning effort to identify and define measurable client and project outcomes.

Is there evidence of shared understanding regarding GOA expectations for success regarding persons affected by FASD and for the Service Network Program project?

Is there agreement among Service Network partners regarding how these expectations are expressed in the form of measurable outcomes?

Is there shared understanding among Service Network partners that these measurable outcomes will be used by GOA in their results-based budgeting evaluations?

Is there evidence that the collaborative process used to determine these measurable outcomes has contributed to the management, participation, and maintenance of the Service Network Program?

Network participation and maintenance: Evaluate the efficacy of the subcommittee structure supporting horizontal linkages.

Has the restructuring of the subcommittees contributed to the implementation of the key activities identified in the FASD 10 Year Strategic Plan and their associated outcomes and strategies?

Have new hand-on tools been created to support the work of these subcommittees? Is there evidence to support that these new tools have been effective in supporting the participation and maintenance of the Service Network Program?

Is there evidence that investments in collaboration, research and evaluation, and knowledge mobilization contributed to capacity building and public innovation in the delivery of FASD programs and services?

Network management: Evaluate the effectiveness of the hands-on tools used to support Service Network governance and management (Operating Grant Policies, KPMG evaluation framework; Service Network Program funding model; reporting requirements).

Is there evidence that these tools are effectively supporting the implementation of the Service Network Program?

Does the funding model provide stability and support the long-term planning needs of the Service Networks?

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Evaluation Questions for Year 10In addition to the above,Design and framing of the post-2017 FASD Strategic Plan:

How do Service Network partners understand sustainability within the context of FASD? Is there evidence of shared understanding of what sustainability means within the context of

FASD? Is there evidence of shared understanding regarding the roles and responsibilities of each Service

Network partner for achieving sustainability?

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References

1. Sørensen E, Torfing J. Enhancing collaborative innovation in the public sector. Administration & Society. 2011;43:842-868.

2. Sørensen E, Torfing J. Making governance networks effective and democratic through metagovernance. Public Administration. 2009;87:234-258.

3. McGuire M. Is It Really So Strange? A Critical Look at the “Network Management Is Different from Hierarchical Management” Perspective. The National Public Management Research Conference. Washington, DC2003.

4. de Loë RC, Armitage D, Plummer R, Davidson S, Moraru L. From government to governance: A state-of-the-art review of environmental governance. Government of Alberta; 2009.

5. Ansell C, Gash A. Collaborative governance in theory and practice. Journal of Public Administration Research and Theory. 2007;18:543-571.

6. Government of Alberta. Alberta’s approach to collaborative practices based on wrap around principles: Collaborative conversations facilitator guide. Government of Alberta; 2011.

7. Poth C, Pei J. Fetal Alcohol Spectrum Disorder (FASD) 10 Year Strategic Plan: A summary of the Year Five Evaluation Project by the Alberta Clinical and Community-based Evaluation Research Team (ACCERT) at the University of Alberta. Edmonton: University of Alberta; 2012.

8. Government of Alberta. FASD 10- Year Strategic Plan: Government of Alberta; 2008.9. Alberta FASD Service Networks. Provincial Evaluation Report2012.10.KPMG. FASD Service Networks Program Guideline Review: Report of Findings. August 2011.11.Wirzba H, Stonehocker D. Lakeland and South Alberta FASD network governance comparison, 2012.12.Alberta FASD Cross-Ministry-Committee. Operating Grant Policies (OGP): FASD - Cross Ministry

Committee; 2012.13.Rutman D, Hubberstey C, Poole N, Hume S, Van Bibber M. Mapping Evaluation of FASD Support

Programs, 2011.

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Outcome 6:Basic and applied research findings, including those from monitoring and evaluation systems, are used to inform FASD strategic planning, FASD prevention activities, and FASD related programming.

Evaluation Question 6a:Have research and leading practice informed: FASD strategic planning, FASD prevention activities, and FASD-related programming?

Evaluation Question 6c:Have the results of monitoring and evaluation informed: FASD strategic planning, FASD prevention activities, and FASD-related programming?

Prepared By:Cheryl PothJacqueline PeiACCERT Evaluation Team Members:David St. Arnault, Jenelle Job, Ellis Chan, Wence Leung, Sukhpreet Tamana, Kendra McCallum, Laura Gould, Virginia Tze, Katy Wyper, and Erin Atkinson.

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Executive Summary

Basic and applied research findings, including those from monitoring and evaluation systems, are used to inform FASD strategic planning, FASD prevention activities, and FASD related programming.

Evaluation Questions

6a: Have research and leading practice informed: FASD strategic planning, FASD prevention activities, and FASD-related programming?

6c: Have the results of monitoring and evaluation informed: FASD strategic planning, FASD prevention activities, and FASD-related programming?

Rationale for Combining Evaluation Questions 6a and 6c

The findings for evaluation questions 6a and 6c are discussed together in this section because the terms research and evaluation were often used interchangeably by participants in focus groups. Thus, it is difficult to analyze the data within the distinct categories of research (6a) and evaluation (6c). Furthermore, the ACCERT evaluation team did not discover any distinction between the terms research and evaluation in any of the documents reviewed. A recent scholarly review article discussing the similarities and differences between research and evaluation can be found in Appendix A.

Data Sources:

Major source(s): Focus groups with FASD-CMC, FASD Service Networks, and PCAP members; interviews with FASD assessment and diagnostic clinic managers

Complementary source(s): Document review of FASD-CMC meeting minutes and annual reports; Network annual reports, business plans, and a strategic planning report; and the KPMG Provincial Network Evaluation Report document

Findings:1. The FASD-CMC has formed strong working relationships with many researchers who have an

expertise in FASD.2. FASD-CMC use results from research/evaluation studies, with a stronger emphasis on studies

conducted in Alberta, to inform strategic planning.3. FASD Service Networks rely primarily on information from local needs and gap assessments and

local program evaluations to guide strategic planning.4. Sharing of research and best practice amongst FASD Service Networks occurs infrequently and

often informally. 5. FASD Service Networks reported using the FASD-CMC web-based learning series to gain research

and best practice information which was used to inform strategic planning.6. PCAP is a research/evidence based prevention program, informed by regular monitoring and

evaluation.7. PCAP staff have access to FASD-related research and best practice through training, internet

searches, conferences, and webinars.

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8. Focus groups with PCAP staff found high rates of poor staff well-being.9. FASD Service Network funding allocation decisions are being informed by research/evaluation

findings from within the Network.10.FASD Service Networks expressed a need to greater research on existing programs and a

willingness to participation in conducting local research.

Recommendations:In light of the pressing issues that exist in relation to the ability for research and evaluation to influence strategic planning, the following recommendations are intended to help move forward the goal of increasing access to and successful use of research in FASD service delivery:

1. The terms research, leading practice, monitoring, and evaluation should be defined and shared with all stakeholders.

2. Informal mechanisms for research and evaluation should be made more formal and explicit in order to better communicate to stakeholders and programmers how research informs strategic planning.

3. Identify and outline a formal process, perhaps using an online database, for integrating research and evaluation and communicate this process at the Service Network level.

4. Allocate funding, time, and opportunities for Service Networks to participate in research.5. Market and utilize an online database as a means for the FASD-CMC and PCAP staff to

communicate and collaborate by both receiving and providing valuable information to and from FASD-CMC members.

6. Conduct a formal assessment and ongoing monitoring of the state of well-being of PCAP mentors, and identify which needs should be prioritized before having staff engage in additional research or evaluation activities.

7. Create a funded Research Sub-Committee of the FASD-CMC that can stand alone consisting of researchers and evaluators with expertise in FASD, community leaders, and FASD-CMC and Service Network representatives. The Research Committee could providing research-related expert guidance, advice, and support to the FASD-CMC and Service Network administration and stakeholders in the community. It could also provide feedback on funding strategic research that would advance the understanding of FASD and inform strategic planning.

8. Provide more opportunities for Service Networks to share information with other Service Networks regarding their successful initiatives and programs.

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Table of Contents

Outcome 6:................................................................................................................................................................................270Evaluation Questions 6a, 6c.............................................................................................................................................. 270

Rationale for Combining Evaluation Questions 6a and 6c..................................................................................270Method....................................................................................................................................................................................... 270Data sources.............................................................................................................................................................................270Findings..................................................................................................................................................................................... 271

To what extent have research and/or evaluation informed strategic planning?......................................271FASD-CMC Perspectives on Strategic Planning........................................................................................................ 271Networks’ Perspectives on Strategic Planning......................................................................................................... 272To what extent has research and evaluation informed prevention activities?...........................................275To what extent have research and evaluation informed fasd-related programming?...........................277Service Networks’ Perspectives........................................................................................................................................ 277FASD Assessment and Diagnostic Clinic Perspectives............................................................................................279

Summary................................................................................................................................................................................... 279Recommendations................................................................................................................................................................ 280References................................................................................................................................................................................ 281

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Basic and applied research findings, including those from monitoring and evaluation systems, are used to inform FASD strategic planning, FASD prevention activities, and FASD related programming.

Research Report: Outcome 6, Evaluation Questions 6a, 6c

Outcome 6:

Evaluation Questions

6a: Have research and leading practice informed: FASD strategic planning, FASD prevention activities, and FASD-related programming?

6c: Have the results of monitoring and evaluation informed: FASD strategic planning, FASD prevention activities, and FASD-related programming?

Rationale for Combining Evaluation Questions 6a and 6c

The findings for evaluation questions 6a and 6c (listed below) are discussed together in this section because the terms research and evaluation were often used interchangeably by participants in focus groups. Thus, it is difficult to analyze the data within the distinct categories of research (6a) and evaluation (6c). Furthermore, the ACCERT evaluation team did not discover any distinction between the terms research and evaluation in any of the documents reviewed. A recent scholarly review article discussing the similarities and differences between research and evaluation can be found in Appendix A.

Pressing Issue(s):

The terms research, leading practice, monitoring, and evaluation were used interchangeably by participants in focus groups and interviews and are not differentiated in any of the reviewed FASD-CMC documents.

Method

The Alberta Clinical and Community-based Evaluation Research Team (ACCERT) was formed to address Evaluation Questions 2a, 5b, c, and d, and 6 a, b, c, d, and e from Outcomes 2, 5, and 6. It is important to note that the Methods section for Outcome 6, Question 6a & 6c can be found in Appendix A of Outcome 2, Question 2a.

Data sources

Major source(s): Focus groups with FASD-CMC, FASD Service Networks, and PCAP members; interviews with FASD assessment and diagnostic clinic managers

Complementary source(s): Document review of FASD-CMC meeting minutes and annual reports; Network annual reports, business plans, and a strategic planning report; and the KPMG Provincial

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Network Evaluation Report document

Findings

To what extent have research and/or evaluation informed strategic planning?

Strategic planning is defined as government activities that are focused on recommending priority areas to guide government policy and action (Government of Alberta’s FASD 10 Year Strategic Plan, 2008). Annual strategic planning is primarily implemented by the FASD-CMC and the FASD Service Networks to ensure that the direction and coordination of the planning and delivery of FASD services aligns with the three priority areas set out in the provincial 10 Year FASD Strategic Plan: awareness and prevention, assessment and diagnosis, and supports for individuals and caregivers.

FASD-CMC Perspectives on Strategic Planning

FASD-CMC strategic planning is informed by research and evaluation through two primary methods: 1) partnerships with researchers and research Service Networks with expertise in FASD, and 2) reviewing the results of research and evaluation studies of provincial and local programs and initiatives.

Partnerships with researchers and research networks

The majority of the FASD-CMC focus group discussions on the use of research to inform strategic planning centered on the formal relationships between the FASD-CMC and researchers with expertise in FASD. FASD-CMC members stated that the FASD-CMC readily involves researchers to inform decisions regarding practice and policy. They reported having close working relationships with many researchers from different academic institutions, members of research steering committees, and research networks. One participant explained:

“…we go to different researchers to help us prepare documents … so those kinds of discussions will go to the academics slash researchers, clinicians, because we need that knowledge to be moved up through our system, we make the arguments of why something should be the way it is from a policy perspective, but we need that expertise…”

Another FASD-CMC member provided examples of how some members of FASD-CMC subcommittees are academic researchers, and how the FASD-CMC contracts researchers with expertise in FASD to inform strategic planning. At the end of the discussion about use of research in strategic planning, one participant pointed out that research informs strategic planning in informal ways as well: “I know there’s a lot of informal ways that research and promising practices has informed strategic planning, the connections, they’re immense, but there hasn’t been, we haven’t named it or labeled it, as such, in all cases”. This comment suggests that in addition to the formal relationships with researchers listed above, there are also informal connections with researchers or research materials that influence strategic planning of the FASD-CMC.

A review of FASD-CMC meeting minutes also found that the FASD-CMC frequently connects with researchers to inform decisions regarding practice and policy. For example, the meeting minutes list Dr.

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Sterling Clarren (Scientific Director of the Canada FASD Research Network), Dr. Gail Andrew (Medical Director of FASD Clinical Services at the Glenrose Rehabilitation Hospital), and Dr. Egon Jonsson (Director and CEO of the Institute of Health Economics) as expert consultants. Furthermore, Drs. Andrew, Clarren, and Jonsson attend the FASD-CMC meetings. The meeting minutes describe how the FASD-CMC has contracted specific research projects in order to gain evidence to inform strategic planning. For instance, one recent contract with the Institute of Health Economics was developed to conduct five studies related to the epidemiology and costs of FASD in Alberta.

Emerging Understandings:

Research partnerships are grounded in relationships that may not always be easy to define or describe.

Evidence Towards Outcomes:

The FASD-CMC has formed strong working relationships with many researchers who have an expertise in FASD.

Pressing Issue(s):

There is a need to make informal mechanisms (e.g., sharing emails about FASD research with an academic researcher) more formal and explicit in order to better understand how research informs strategic planning.

Evaluations of local programs and initiatives

FASD-CMC members reported that the FASD-CMC uses results from research and evaluations of local programs to inform strategic planning. One member articulated:

“I would say the majority of the initiatives funded by FASD-CMC, via the ministries, all have an evaluative or research component whether it’s three Cs, Learning Series, they’ve all got some way of measuring, has this been successful or not. That informs our ability to, either to continue to go in that direction or not.”

FASD-CMC members added that results of research studies that have been replicated in Alberta have more influence on strategic planning than do studies not replicated in Alberta. Indicating that local research findings are assigned a higher priority than non local research findings in guiding strategic planning decisions. Furthermore, a review of FASD-CMC meeting minutes found documentation of regular presentations from the results of local research and evaluations.

Networks’ Perspectives on Strategic Planning

The strategic planning of the FASD Service Networks are primarily informed by: 1) the use of research and/or evaluation of intra-Network programs and services to assess the needs and service gaps in their communities, 2) the Service Networks’ capacity to conduct local research, and 3) the use of FASD-CMC web-based Learning Series and informal communication with other Service Networks.

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Use of research and/or evaluation of intra-Network programs and services

During focus group sessions, Service Network leadership members reported that they primary use research and evaluation findings on programs within their own Service Networks to inform strategic planning. However, references to specific research and/or evaluation studies were not found in any of the Service Network documents reviewed (i.e., annual reports, business plans, strategic planning report). This finding suggests that while informal methods of using research may exist, Service Networks do not appear to have a formal process for integrating research and evaluation. Many Service Networks also expressed a desire for a broader range of research/evaluation information but they had limited access to research/evaluation conducted outside of their Service Network.

Network leadership members also reported that their strategic planning was largely informed by identified needs and gaps in the community. For example, one participant expressed:

“…strategic planning, we just had it in January and it was highly influenced by some of the gaps in services that we see in the community, I mean, all of our programs experience huge issues with housing and so we’ve made that one of our priorities.”

The importance of identifying needs and gaps in the community was validated by a document review of a recent Network Strategic Planning Report and is also consistent with the results from a recent KPMG Provincial Network Evaluation Report.1(p.80-85)

The capacity to conduct research appeared to vary across Service Networks. Some Service Networks expressed a desire to conduct more local research, but that they were limited by a lack of funding for research and a lack of access to researchers. One Service Network participant expressed:

“Getting the Networks more involved right, all the communities are doing such great work and very innovative things that I mean, in [CITY] we’re not tied in with anybody that is doing research and we would love to be able to do that.”

Emerging Understandings:

Research and evaluation information is valued by community members.

Evidence Towards Outcomes:

FASD-CMC use results from research/evaluation studies, with a stronger emphasis on studies conducted in Alberta, to inform strategic planning.

FASD Service Networks report using findings from local research and evaluations to inform strategic planning.

FASD Service Networks use information from local needs and gap assessments to guide strategic planning.

Pressing Issue(s):

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There is a need to identify and outline a formal process for integration of research and evaluation into the process of strategic planning at the FASD Service Network level.

Service Networks lack access to research/evaluation findings from outside their Network.

Service Networks are lacking funding to conduct their own research, and report having limited access to researchers.

Web-based learning and informal communication with Service Networks

Unlike the FASD-CMC focus group participants, Service Network leadership members did not report having partnerships with researchers or research networks. They described receiving information about research and evaluation conducted outside of their Network primarily through watching Learning Series videos posted on the FASD-CMC website. This point is reflected in a statement which received unanimous agreement from the other participants of a Service Network focus group:

“And even something that seems simple as the online learning stuff that’s being offered, it’s all FASD research and best practice based presentations that are being done and you can be involved when it’s live or you can go into the database and gather that information.”

Several Service Network focus group participants also indicated that they use informal methods of communication, such as phone and e-mail, to gain information about research. This was articulated by one participant who explained “… if I am looking for best practice and research, I’ll talk to [other contacts] or Network coordinators to get the information.” However, participants also indicated that it would be beneficial for individuals involved in strategic planning to have more opportunities to meet face-to-face with individuals from outside of their Service Network to share information. One participant commented:

“I think from a global strategic planning perspective, sure, it would be nice to have all the players at the table and have the research information and best practice information.” Another participant commented: “You know there is a wealth of knowledge amongst the Networks and coordinators but we do not get enough time, you don’t do it on a phone call necessarily, it’s more face-to-face we need.” Many Service Network members expressed frustration with an overreliance on internal (i.e., within the Service Network), as opposed to external (i.e., outside the Service Network) research and evaluation to inform strategic planning, which was believed to occur primarily because of the lack of funding allocated to the Service Networks for external research and evaluation.

Pressing Issue(s):

FASD Service Networks report a lack of face-to-face meeting time with other Service Networks to discuss research and best practice to help inform strategic planning.

Evidence Towards Outcomes:

FASD-CMC disseminated research/evaluation findings to Service Networks through Learning Series videos posted on the FASD-CMC website.

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Sharing of research and best practice amongst and within Service Networks occurs informally through established relationships.

To what extent has research and evaluation informed prevention activities?

Awareness and prevention services are “those that educate and inform about the risks of drinking alcohol while pregnant, the effects of FASD, as well as those services that increase overall awareness about healthy pregnancy.” 2(p.17) Types of prevention activities include: information, universal prevention, targeted prevention, indicated prevention, and treatment.2 One of the largest prevention programs that exists in Alberta is the Parent-Child Assistance Partnership (PCAP). The following findings represent the perspectives of participants from PCAP focus groups, Service Network focus groups, and the FASD-CMC focus groups. Topics covered in this section include: 1) the PCAP prevention program as a research-based program, 2) primary means of accessing research, 3) excitement about the development of an online database, and 4) potential impacts of poor well-being among PCAP staff.

PCAP Prevention Program as a Research-based Program

Many PCAP members reported that the PCAP prevention program is strongly research-based. They also highlighted the fact that the PCAP prevention program is continuously evaluated and this research helps inform prevention activities. One participant stated:

“We’re doing best practice because Dr. Grant at the University of Washington continues to evaluate and monitor the work.” Another PCAP participant expanded by stating that: “PCAP of course, [research-based information on the program] not only provides that credibility to the work that you’re doing but it gives you that focus in how you’re going to move forward.”

Primary Means of Accessing Research

With regards to the availability of FASD research and best practice and how this has informed strategic planning and service delivery in the PCAP prevention program, participants of the PCAP focus groups frequently reported that they rarely had the time or means to search for and consume FASD research and best practice. However, participants listed four primary means of obtaining research: PCAP training, internet searches, conferences, and webinars provided by the FASD-CMC. The extent to which this information impacts the prevention activities of PCAP mentors in unclear.

Excitement about the Development of an Online Database

In several PCAP focus groups, participants expressed their excitement around a project being developed by the FASD-CMC: the creation of an online database to enhance the information sharing and communication between FASD frontline workers and the FASD-CMC. PCAP participants reported that the database would serve two identified purposes: 1) it would allow the FASD-CMC to share resources and opportunities with PCAP members, and 2) it would act as a monitoring and evaluation tool in which PCAP members would have a place to report progress to the FASD-CMC. This database would allow PCAP members access to consistent and timely reporting of program outcomes to the FASD-CMC, and

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communicate the successes and challenges of working with their clients, which has the potential to increase collaboration between frontline workers and the FASD-CMC.

Emerging Understandings:

There is enthusiasm for the development of improved mechanisms for information sharing and communication.

Evidence Towards Outcomes:

PCAP is a research/evidence based prevention program, informed by regular monitoring and evaluation.

PCAP staff are excited about future opportunities for enhanced information sharing with the FASD-CMC.

PCAP staff have access to FASD-related research and best practice through training, internet searches, conferences, and webinars.

Pressing Issue(s):

There is an expressed need for the FASD-CMC and PCAP staff to have a better line of communication and collaboration.

Potential Impacts of Poor Staff Well-Being

It is important to note that one theme emerging from PCAP focus groups was staff well-being. Staff well-being can be conceptualized as the health (e.g., physical, emotional, psychological) of PCAP workers, the workplace factors that contribute to health, and the effect that staff wellness has on the delivery of services. From the PCAP focus group discussions, it can be inferred that staff well-being may both directly and indirectly contribute to current and future monitoring and evaluation activities because these types of activities add to the workload of PCAP staff. One of the main discussions in focus groups involved burnout, lack of time to dedicate to clients, and that a general lack of staff well-being would likely compromise the execution of any research and evaluation activities, as well as the delivery of prevention services which are the focus of the PCAP model.

Pressing Issue(s):

Staff burnout and turnover have been identified as ongoing issues for the PCAP program; thus, the importance of PCAP staff’s well-being should be recognized and acknowledged.

To what extent have research and evaluation informed fasd-related programming?

Although various examples of FASD-related programs are referenced throughout the 10 Year Strategic Plan document, FASD-related programming is never explicitly defined. For the purposes of this evaluation, FASD-related programming refers to any coordinating and delivery of formal supports and

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services intended to enable individuals with FASD to realize their potential. The FASD Service Networks perspectives, along with perspectives from managers of Alberta FASD assessment and diagnostic clinics will be referenced in this section.

Service Networks’ Perspectives

The Service Network focus groups discussed three main topics related to research and programming, including: 1) the use of research to direct Service Network funding for future programs and inform existing programs, 2) the desire for program staff to access more research and general information, and 3) the lack of research and evaluation on programs and services.

Use of research information to direct Service Network funding for future programs

During the Service Network focus groups, participants reported that research was essential for making funding allocation decisions and informing programs and services within their Service Network. For example, one participant stated:

“… research and best practice has as much impact, it certainly is on the radar when we are doing strategic planning but it’s got more impact in service delivery and it’s a requirement of our service providers to use the existing research and we send that to them all the time through email … they are required to do best practice … and that’s all monitored through service provider compliance.”

The following passage highlights the Network’s expectation that service providers use research to inform their practice, which is monitored by the Service Network.

“I know our organization is continually looking at best practice and um research-based information in order to move forward in any of our programs … it not only provides that credibility to the work that you’re doing but it gives you that focus in how you’re going to move forward … having that information helps guide us in regards to how we provide those services.”

Desire for more research and general information

Service Network focus group participants indicated a desire for greater access to research literature and a designated resource person with expertise in research: “It would be nice to have a place that you can go … to develop a program, [to see] what studies have been done on it, what’s the research, it would be nice to have some place like that, someone we can go to”.

Participants in this focus group also spoke about a desire to have more general information about the programs offered in different Service Networks. For example, one participant expressed: “[It] would be helpful if we had every Network have knowledge of all, whether they were Network-funded or not, the FASD programs that are out there in existence so that I am not creating a new something.”

Lack of research on programs and services

During the focus group with FASD-CMC members, the Service Network and service providers who attended indicated that they use research where they can; however, they reported an overall lack of

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best practice, suggesting that they themselves are creating it. For example, one respondent stated that: “There isn’t a manual out there that says this is best practice. We are doing it and if it doesn’t work, we try something different.” Although the respondents acknowledged taking recommendations from research and building on them, the main message was that research is still “catching up” to their practice.

Evidence Towards Outcomes:

Service Network funding allocation decisions are being informed by research/evaluation findings from within the Service Network.

FASD-related programs and services are responsive to available research and best practice information.

Pressing Issue(s):

Resources are needed to support Service Networks and service providers in conducting and disseminating research on their existing programs.

Service Networks require access to FASD research resources, including research literature and individuals with expertise in FASD research.

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FASD Assessment and Diagnostic Clinic Perspectives

FASD assessment and diagnostic clinic managers reported in interviews that research has been extensively used throughout their services. Many clinic coordinators indicated that a strength of their diagnostic decision criteria is that it is evidence-based. In addition, clinic managers reported sending representatives to FASD conferences across Canada in order to bring back and disseminate current research to inform practice. However, many managers noted that their clinics conducted very little of their own research. They reported that this was due to high demand for assessment services.

Summary

The FASD-CMC has formed strong working relationships with many researchers who have an expertise in FASD.

FASD-CMC use results from research/evaluation studies, with a stronger emphasis on studies conducted in Alberta, to inform strategic planning.

FASD Service Networks rely primarily on information from local needs and gap assessments and local program evaluations to guide strategic planning.

Sharing of research and best practice amongst FASD Service Networks occurs infrequently and often informally.

FASD Service Networks reported using the FASD-CMC web-based learning series to gain research and best practice information which was used to inform strategic planning.

PCAP is a research/evidence based prevention program, informed by regular monitoring and evaluation.

PCAP staff have access to FASD-related research and best practice through training, internet searches, conferences, and webinars.

Focus groups with PCAP staff found high rates of poor staff well-being.

FASD Service Network funding allocation decisions are being informed by research/evaluation findings from within the Network.

FASD Service Networks expressed a need to greater research on existing programs and a willingness to participation in conducting local research.

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Recommendations

In light of the pressing issues that exist in relation to the ability for research and evaluation to influence strategic planning, the following recommendations are intended to help move forward the goal of increasing access to and successful use of research in FASD service delivery:

1. The terms research, leading practice, monitoring, and evaluation should be defined and shared with all stakeholders.

2. Informal mechanisms for research and evaluation should be made more formal and explicit in order to better communicate to stakeholders and programmers how research informs strategic planning.

3. Identify and outline a formal process, perhaps using an online database, for integrating research and evaluation and communicate this process at the Service Network level.

4. Allocate funding, time, and opportunities for Service Networks to participate in research.5. Market and utilize an online database as a means for the FASD-CMC and PCAP staff to

communicate and collaborate by both receiving and providing valuable information to and from FASD-CMC members.

6. Conduct a formal assessment and ongoing monitoring of the state of well-being of PCAP mentors, and identify which needs should be prioritized before having staff engage in additional research or evaluation activities.

7. Create a funded Research Sub-Committee of the FASD-CMC that can stand alone consisting of researchers and evaluators with expertise in FASD, community leaders, and FASD-CMC and Service Network representatives. The Research Committee could providing research-related expert guidance, advice, and support to the FASD-CMC and Service Network administration and stakeholders in the community. It could also provide feedback on funding strategic research that would advance the understanding of FASD and inform strategic planning.

8. Provide more opportunities for Service Networks to share information with other Service Networks regarding their successful initiatives and programs.

References

1. KPMG. Alberta FASD Service Networks Provincial Formative Evaluation Report, 2011.2. Government of Alberta. FASD 10 Year Strategic Plan, 2008.

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Outcome 6

Basic and applied research findings, including those from monitoring and evaluation systems, are used to inform FASD strategic planning, FASD prevention activities, and FASD related programming.

Evaluation Question 6b:

Have the efforts of the FASD-CMC resulted in increased availability to FASD-related data locally and provincially?

Prepared By:Cheryl Poth Jacqueline PeiACCERT Evaluation Team Members:David St. Arnault, Jenelle Job, Ellis Chan, Wence Leung, Sukhpreet Tamana, Kendra McCallum, Laura Gould, Virginia Tze, Katy Wyper, and Erin Atkinson.

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Executive Summary

Basic and applied research findings, including those from monitoring and evaluation systems, are used to inform FASD strategic planning, FASD prevention activities, and FASD related programming.

Evaluation Question

6b: Have the efforts of the FASD-CMC resulted in increased availability to FASD-related data locally and provincially?

Data Sources:

Major source(s): Focus groups with members of the FASD-CMC, FASD Service Networks, and PCAPComplementary source(s): Interviews with clinicians and clinic directors

Findings:

1. By having opportunities to connect with researchers and clinicians, stakeholders were able to access the most up-to-date research findings.

2. Some PCAP service providers expressed that some of the current research is either irrelevant or not applicable.

3. Many stakeholders had opportunities to attend conferences, connect with researchers, communicate with other participants, and access the general FASD research findings at these meetings.

4. The reported participation and positive feedback from focus group participants regarding online professional development supports that this is an effective dissemination activity.

5. Focus group participants acknowledged the potential of using video conferencing as a research dissemination media.

6. FASD-CMC members used briefing notes to disseminate research findings to higher levels of government.

Recommendations:

1. Two key precursors of increasing availability to FASD-related data locally and provincially were: 1) relationships between researchers and clinicians, and stakeholders, and 2) relevance of research. Thus, the FASD-CMC should provide a mechanism to strengthen relationships between researchers and service providers and to maintain the relevance of research.

2. Since conferences were identified as an effective means for most stakeholders to access research, resources should be allocated to supporting conference attendance in order to increase the accessibility of FASD-related research data.

3. Resources should be allocated to continue the development of online professional development services and to improve current services, such as providing support for service providers, redesigning online resources to be more user-friendly, and establishing a more centralized location for stakeholders (i.e., families and clients) who do not have internet access to utilize these online resources.

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4. The FASD-CMC online database was reported as an effective and current means of sharing research data, though it is only available to PCAP service providers. With its success in the PCAP program, the FASD-CMC should consider expanding the online database for other service providers.

5. Video conferencing was identified as an effective collaboration tool, but not an effective research dissemination tool. The FASD-CMC should recognize the potential of video conferencing and consider using this activity to increase the availability to FASD research data to stakeholders, especially those from remote areas.

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Table of Contents

Outcome 6:................................................................................................................................................................................286Evaluation Question 6b....................................................................................................................................................... 286

Method....................................................................................................................................................................................... 286Data sources.............................................................................................................................................................................286Findings..................................................................................................................................................................................... 286Precursors of Research Dissemination........................................................................................................................286

Relationship building........................................................................................................................................................... 286Relevance of research.......................................................................................................................................................... 288

Research Dissemination Activities................................................................................................................................288Conferences.............................................................................................................................................................................. 289Online professional development.................................................................................................................................... 290Online database...................................................................................................................................................................... 291Video conferencing................................................................................................................................................................ 291Briefing notes.......................................................................................................................................................................... 292

Summary................................................................................................................................................................................... 293Recommendations................................................................................................................................................................ 293Considerations for Year 7 Evaluation...........................................................................................................................294References................................................................................................................................................................................ 295

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Basic and applied research findings, including those from monitoring and evaluation systems, are used to inform FASD strategic planning, FASD prevention activities, and FASD related programming.

Research Report: Outcome 6, Evaluation Questions 6b

Outcome 6:

Evaluation Question

6b: Have the efforts of the FASD-CMC resulted in increased availability to FASD-related data locally and provincially?

Method

The Alberta Clinical and Community-based Evaluation Research Team (ACCERT) was formed to address Evaluation Questions 2a, 5b, c, and d, and 6 a, b, c, d, and e from Outcomes 2, 5, and 6. It is important to note that the Methods section for this outcome (Outcome 6, Question 6b) can be found in Appendix A of Outcome 2, Question 2a.

Data sources

Major source(s): Focus groups with members of the FASD-CMC, FASD Service Networks, and PCAP

Complementary source(s): Interviews with clinicians and clinic directors

Findings

Participants from focus groups and interviews identified five primary activities (conferences, online professional development, online database, video conferencing, and briefing notes) that the FASD-CMC used to disseminate research to policy makers, program coordinators, and service providers. The following section will describe: 1) the precursors of research dissemination including relationship building and relevance of research, and 2) research dissemination activities, including the impact of such activities and challenges for accessing research data.

Precursors of Research Dissemination

For all research dissemination activities, two key precursors necessary for these activities to be effective were relationship building with researchers and clinicians, and the relevance of research findings. Thus, it is important to ensure these precursors are established before initiating any dissemination activities.

Relationship building

The first precursor of effective research dissemination activities involved building relationships between stakeholders and researchers and/or clinicians. It appears that the FASD-CMC valued the importance of

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relationship building, thus collaborating with clinicians and researchers from Alberta academic institutions and the Canada FASD Research Network to disseminate research data locally, provincially, nationally, and internationally. These relationships resulted in researchers participating in conferences, presenting in workshops and online learning series, and attending other meetings to share research findings and best practice. Moreover, findings from the KPMG Provincial Network Evaluation Report revealed that many FASD Service Networks are participating in major academic projects led by widely recognized researchers, such as the McDaniel Youth Research Project led by Drs. Carmen Rasmussen and Jacqueline Pei from University of Alberta.1 Of note, FASD-CMC focus group participants reported a reduction in support for the dissemination of research and best practice, and attributed this to recent changes in leadership; however, this perspective requires further investigation because it is important to recognize that leadership changes directly impact the effectiveness of dissemination activities (e.g., whether the stakeholders can attend the activities… etc.). However, this topic of investigation is beyond the scope of this study.

The majority of PCAP focus group participants reported feeling supported by researchers because they were able to access updated FASD research data from these researchers. One PCAP service providershared her experience working with a researcher:

“ I found it was a very good program and also working with [Researcher] who has taught FASD and does a lot of workshops around FASD, she’s my mentor, and so it really helps to have someone who is that knowledgeable around FASD to be your support and in your corner and for myself personally living with FASD twenty-four-seven also is a training that not everybody wants but it’s definitely been one of my most intense training to prepare me for this work.”

In general, most Service Network program coordinators and PCAP service providers reported that researchers have been helpful in sharing research, which they used to refine their clinical work.

Emerging Understandings:

Relationship building is a foundational component of integration between research, policy, and practice.

Evidence Towards Outcomes:

Existing partnerships indicate that stakeholders have had the opportunity to connect with researchers and clinicians to access the most updated research.

Pressing Issue(s):

It was reported that stakeholders’ and service providers’ relationships with researchers and clinicians is important in determining whether the process of research dissemination will be successful and effective, thus it could be suggested that strong relationships are the foundation of dissemination activities. As a result there is a need for the FASD-CMC to support the strengthening of relationships between researchers/clinicians and program coordinators and service providers in order to increase the availability of FASD-related data.

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In addition, it is important to systematically monitor the relationship between all stakeholders and researchers in order to document any relationship changes over time.

Relevance of research

The second precursor of effective dissemination of research is the relevance of that research. Participants from the PCAP focus group reported that if research findings are irrelevant or not applicable to their work, their interest in research decreased, as did their wiliness to engage in research or dissemination activities. Some PCAP service providers expressed their concern that research used in their current training is theoretically driven, and they hoped to see a more practical and local focus in the future, in order for them to incorporate this research into their training and practice. One PCAP service provider participant explained: “the training needs to come more from a practical base rather than a research base because research is really good down the road for outcomes.”

Emerging Understandings:

Applied research has inherent relevance to service providers and policy makers, which in turn increases interest and engagement. Increasing clarity of implications for all research may transfer this value.

Evidence Towards Outcomes:

Although some service providers expressed that current research is either irrelevant or not applicable, their suggestions provide insights for researchers to aim toward more practical and usable research that service providers could incorporate into their clinical work.

Pressing Issue(s):

It was reported that use of research and best practice is important; however the current research disseminated to PCAP mentors is sometimes felt to be either irrelevant or not applicable, which in turn decreases their interest in accessing and utilizing this research.

Research Dissemination Activities

The following five FASD-CMC research dissemination activities were identified by focus group and interview participants: conferences, online professional development, online databases, video conferencing, and briefing notes. Each activity is intended to target a different tier of dissemination. Each tier of dissemination has two dimensions: 1) range of audience, from general learners to specific groups of professionals involved in the CMC’s FASD 10 Year Strategic Plan, and 2) depth of research information shared, varying from general FASD research findings to specific topics within FASD. In the current report, activities are listed in order of their target audiences, ranging from a larger and broader audience to a smaller and more specific audience. In the following section, research dissemination activities will be described and their impacts and challenges will be discussed.

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Conferences

Conferences were identified as a crucial activity that allows most stakeholders (i.e., policy makers, service providers, program coordinators, clients, and families) to share information and learn about general FASD research findings and best practice from scientific experts, researchers, and clinicians. The FASD-CMC acknowledged the importance of conferences, investing effort into hosting local and provincial meetings such as The 2011 Promising Practices, Promising Futures Alberta FASD Conference and the recent 2012 Alberta FASD Conference, to allow for dissemination to occur. These conferences provide an opportunity to share the most up-to-date research findings and publish books and articles with useful FASD research data sources. When discussing previous conferences, one participant from the FASD-CMC focus group expressed:

“These are scientific experts, researchers that contribute, which is fantastic, it has brought in academic policy makers, service providers, clients, families, caregivers; like it’s, depending on the agenda has brought in a number of people, brought in a number of government reps and it’s gone from just Alberta to international, to me that is hugely significant…”

Conferences have also been identified by Service Network program coordinators and PCAP service providers as an effective activity for accessing FASD research. One PCAP participant highlighted this by stating the following:

“…you know we’re developing it [the program] as we go along so we draw on [Researcher]’s expertise in some of the information she can share with us and we do, you know, we go to conferences and learn about research and things there and try to incorporate some of the things that we’ve learned into what we do...”

Service Network program coordinators and PCAP service providers reported that one major challenge in accessing research is lack of funding to attend conferences. As one PCAP service provider described, “… I find you happen to get to a conference depending on what the funding is like… because of funding often times we don’t get to have all the opportunities to learn about what is happening.”

Emerging Understandings:

Local and provincial conferences are necessary to bring stakeholders together and disseminate research data.

Evidence Towards Outcomes:

Stakeholders have the opportunity to attend conferences, connect with researchers, communicate with other participants, and access general FASD research findings at conferences.

Pressing Issue(s):

Although conferences were noted as an important way to disseminate and access research findings, a number of PCAP service providers reported that a lack of resources (e.g., funding for travel and worker support during absences) often impedes workers’ ability to attend conferences.

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Online professional development

Online professional development was perceived by participants across focus groups to be another effective way to access research data. Online professional development provided by the FASD-CMC includes webinars, the Alberta FASD Learning Series, and other online learning resources that cover specific topics related to FASD, such as Safety Planning for the Service Provider and Talking with Women about Alcohol and Pregnancy. All online professional development activities are available for the FASD-CMC stakeholders including program coordinators, service providers, clients, and families. In general, Service Network program coordinators and PCAP service providers reported that the online learning experience is very beneficial to help them to further understand the risks, the needs, and the supports needed for individuals with FASD and their families. One service provider reported:

“What the CMC has provided that has been helpful of course has been the FASD conferences, the Online Learning Series is excellent, it’s great when you’ve got new staff and you can say okay even existing staff to get more information, the research part, uh, has been awesome.”

Participants highlighted online professional development as a helpful resource from the FASD-CMC to access updated information and research; however, some participants reported that they did not have the chance to access online training sessions due to lack of funding, lack of internet accessibility, difficulties in navigating online resources, and heavy service provider workloads. As one program coordinator explained:

“Well [the FASD-CMC] has… provided some funds for the video webcast training sessions which are great… but the province needs more… I have parents calling me all the time, ‘when is there another workshop on FASD?’… the CMC has said that they are taking on the training and the awareness and so we can’t. We’re not funded to do that. We do some FASD one-on-one… training but… that universal training doesn’t happen. The webcast stuff is very specific – it’s really good training. I love it for my staff [and] I send them there all the time. But some of that really basic stuff that other frontline people need or parents are asking for, it’s not available.”

Emerging Understandings:

Online professional development will help overcome geographic barriers and allow stakeholders to access the most current FASD research findings so they can maintain an up-to-date leading edge in their respective roles and responsibilities.

Evidence Toward Outcomes:

Focus group and interview participants support online professional development as an effective dissemination activity.

Pressing Issue(s):

Online activities have been demonstrated as an effective and efficient way of accessing information; however, FASD-CMC needs to provide support for stakeholders to access and use online professional activities. For example, some stakeholders (i.e., clients with FASD and their

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families) may not have computers and/or internet service to access online resources. This could be solved by establishing centralized locations for stakeholders to access these resources.

To address technical difficulties (e.g., struggling to access the Internet, struggling to browse online resources…etc.), FASD-CMC needs to further improve their online resources to be more user-friendly and employ a full-time technical support staff to assist stakeholders in navigating resources.

Due to heavy workloads, service providers may not have time or energy to access online resources; therefore, it is important to ensure opportunities for career development including how providers may learn from online resources.

Online database

Another effective and recent mechanism that FASD-CMC has used to share research data with local service providers is an online database. This online database was designed specifically for PCAP, serving two purposes: 1) to share program-related research and resources with PCAP service providers, and 2) to collect evaluation data from different PCAP locations. As one FASD-CMC participant stated:

“In terms of the evaluation, what they’re setting up to do in terms of developing a database, or data collection tools… for the PCAP programs, the twenty four programs… those are huge, huge things that have evolved in the last five years.”

Several PCAP participants stated that they currently receive FASD research by email through their agencies, and were enthusiastic about the new potential for accessing research data. As one PCAP participant expressed:

“I actually didn’t know that there was any changes to the PCAP program because it was somebody from Seattle came and so the changes you’re talking about are yet to come so it’s exciting too, cause all the paperwork was American right and now it will be really looking forward to having… stuff [research papers] more that can be used, so, and a database, that would be awesome, so those are changes to come.”

After launching the online database for PCAP, the FASD-CMC may consider expanding the database to other agencies as some Service Network program coordinators identified the need for such a resource across different agencies and programs.

Video conferencing

Another activity used by the FASD-CMC to disseminate research and best practice both locally and provincially is video conferencing. The role of video conferencing is to bring together specific professionals to meet, collaborate, and share ideas. Most FASD-CMC members viewed video conferencing as a helpful way to share specific and recent research information. One FASD-CMC participant stated that, “… we also initiated the video conferencing, to share best practicing, which I

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think has made a tremendous difference … because a lot of people in remote areas just don’t have access to the expertise…” Similarly, program coordinators and service providers agreed that video conferencing was helpful for collaboration purposes because of geographic challenges, however they did not consider it as a mean to access research. According to the KPMG Provincial Network Evaluation, the Service Network program coordinators reported that the increased availability of video conferencing equipment was helpful in facilitating rural communication and participating in meetings. In addition, coordinators realized the potential of hosting learning information sessions through video conferencing. However, the use of video conferencing was inconsistent across Service Networks due to technical, availability, and financial reasons.

Emerging Understandings:

In an effort to support continued collaboration between stakeholders, video conferencing should be emphasized as an effective medium, especially for remote areas.

Evidence Towards Outcomes:

Focus group participants noted an increase in the use of video conferencing for collaboration among stakeholders, and expressed that it has been an effective means for stakeholders located in remote regions with geographical barriers.

Pressing Issue(s):

Video conferencing was viewed as an effective collaboration tool, and there is a need and responsibility to share beneficial methods of information sharing with FASD program coordinators and service providers.

Briefing notes

Finally, briefing notes were reported as a useful mechanism for FASD-CMC members to share information, including specific research findings with ministers; however, the benefit of briefing notes was limited to FASD-CMC members, and no other stakeholder groups.

Emerging Understandings:

Disseminating research findings requires a wide range of mediums to effectively meet the needs of each stakeholder group and can be used by all stakeholders in order to reach a maximum audience.

Evidence Toward Outcomes:

FASD-CMC members were able to use briefing notes to disseminate and communicate research findings to higher levels of government.

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Summary

By having opportunities to connect with researchers and clinicians, stakeholders were able to access the most up-to-date research findings.

Some PCAP service providers expressed that some of the current research is either irrelevant or not applicable.

Many stakeholders had opportunities to attend conferences, connect with researchers, communicate with other participants, and access the general FASD research findings at these meetings.

The reported participation and positive feedback from focus group participants regarding online professional development supports that this is an effective dissemination activity.

Focus group participants acknowledged the potential of using video conferencing as a research dissemination media.

FASD-CMC members used briefing notes to disseminate research findings to higher levels of government.

Recommendations

Two key precursors of increasing availability to FASD-related data locally and provincially were: 1) relationships between researchers and clinicians, and stakeholders, and 2) relevance of research. Thus, the FASD-CMC should provide a mechanism to strengthen relationships between researchers and service providers and to maintain the relevance of research.

Since conferences were identified as an effective means for most stakeholders to access research, resources should be allocated to supporting conference attendance in order to increase the accessibility of FASD-related research data.

Resources should be allocated to continue the development of online professional development services and to improve current services, such as providing support for service providers, redesigning online resources to be more user-friendly, and establishing a more centralized location for stakeholders (i.e., families and clients) who do not have internet access to utilize these online resources.

The FASD-CMC online database was reported as an effective and current means of sharing research data, though it is only available to PCAP service providers. With its success in the PCAP program, the FASD-CMC should consider expanding the online database for other service providers.

Video conferencing was identified as an effective collaboration tool, but not an effective research dissemination tool. The FASD-CMC should recognize the potential of video conferencing and consider using this activity to increase the availability to FASD research data to stakeholders, especially those from remote areas.

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Considerations for Year 7 Evaluation

Furthering the results of the present evaluation, it will be important in Year 7 to systematically track stakeholders’ participation and experience during each dissemination activity. Since this evaluation is the first of the 10 Year Strategic Plan, there was no baseline data available with which to compare the current findings. Moreover, all data used for this evaluation was qualitative (i.e., focus groups and interviews), so it was difficult to accurately determine quantitatively the increase in availability of FASD research data over the past 5 years. It will be important to incorporate a pre- and post-survey for all major dissemination activities (or other quantitative measures) in future evaluations in order to determine the availability of research data shared by each dissemination method. In addition, conducting an online survey to collect data from stakeholders and service providers about what they want to gain from the dissemination activities before actually disseminating research would be valuable so the FASD-CMC could tailor the research materials shared in each dissemination activity according to the needs of participants. This would help ensure the relevancy of research. Inviting more stakeholders to participate in the Year 7 evaluation will also be helpful in capturing different perspectives and accurately representing this population.

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References

1. KPMG. Alberta FASD Service Networks Provincial Formative Evaluation Report, 2011.

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Outcome 6:Basic and applied research findings, including those from monitoring and evaluation systems, are used to inform FASD strategic planning, FASD prevention activities, and FASD related programming.

Evaluation Question 6d:An inventory of Alberta-based FASD research and researchers covering all four pillars: basic, clinical, population, and health services will be established. This will provide a baseline measurement for research capacity in the province of Alberta.

Prepared by:Cheryl PothJacqueline PeiACCERT Evaluation Team Members:David St. Arnault, Jenelle Job, Ellis Chan, Wence Leung, Sukhpreet Tamana, Kendra McCallum, Laura Gould, Virginia Tze, Katy Wyper, and Erin Atkinson.

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Executive Summary

Basic and applied research findings, including those from monitoring and evaluation systems, are used to inform FASD strategic planning, FASD prevention activities, and FASD related programming.

Evalulation Question

6d: An inventory of Alberta-based FASD research and researchers covering all four pillars: basic, clinical, population, and health services will be established. This will provide a baseline measurement for research capacity in the province of Alberta.

Data Sources:

Major source(s): Literature review

Complementary Source(s): KPMG (2011) Provincial Network Evaluation Report

Findings:

1. There is good evidence that our capacity to respond to emerging research needs in FASD strategic planning is growing.

2. Research accomplishments have been achieved based on the combined efforts of researchers, institutions, clinics, and policy makers.

3. Most Alberta-based FASD research falls within the clinical pillar, followed by health, population, and basic pillars.

4. There exists growth in Alberta-based research accomplishments as evident in changes in research trends within each pillar over the past five years.

5. Within the clinical pillar, a large portion of this research is community-based research. A significant expansion of clinical research has emerged to include FASD intervention across the lifespan, thus indicating an accomplishment in connecting research to community-based programs and services.

6. Health research has responded well to FASD programs and services which highlights capacity to evaluate early intervention and support services specifically tailored toward individuals and families affected by FASD.

7. Population research has continually grown to provide reliable research on FASD cost, prevalence, and prevention in Alberta, hence providing a platform for informing strategic planning.

8. Basic research in the past 5 years has seen increase in brain imaging research imperative to increased understanding about FASD.

Recommendations:

1. Build partnerships between institutions and FASD clinics to generate research that can directly inform practice.

2. Conduct research to improve clinical services through targeting diagnostic outcomes towards identifying needs and interventions rather than focusing entirely on identification.

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3. Recruit institution-based researchers to evaluate programs (demonstration projects) funded within the province irrespective of their existing evidence basis and services referred to by clinicians to understand how the needs of individuals and families with FASD are being met.

4. Expand research within Alberta to cover all four basic pillars evenly as relevant and appropriate to strategic planning within Alberta.

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Table of Contents

Outcome 6................................................................................................................................................................................. 300Evaluation Question 6d.......................................................................................................................................................300Method....................................................................................................................................................................................... 300Data sources.............................................................................................................................................................................300Introduction to Findings.................................................................................................................................................... 300

Pillar One: Basic Pillar......................................................................................................................................................... 301Pillar Two: Clinical Pillar................................................................................................................................................... 303Pillar Three: Population Pillar......................................................................................................................................... 307Pillar Four: Health Pillar.................................................................................................................................................... 310

Conclusions.............................................................................................................................................................................. 312Summary................................................................................................................................................................................... 314Recommendations................................................................................................................................................................ 314Considerations for Year 7 Evaluation...........................................................................................................................315References................................................................................................................................................................................ 316Research Inventory...............................................................................................................................................................320

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Basic and applied research findings, including those from monitoring and evaluation systems, are used to inform FASD strategic planning, FASD prevention activities, and FASD related programming.

Research Report: Outcome 6, Evaluation Question 6d

Outcome 6:

Evaluation Question

6d: An inventory of Alberta-based FASD research and researchers covering all four pillars: basic, clinical, population, and health services will be established. This will provide a baseline measurement for research capacity in the province of Alberta.

Method

The Alberta Clinical and Community-based Evaluation Research Team (ACCERT) was formed to address Evaluation Questions 2a, 5b, c, and d, and 6 a, b, c, d, and e from Outcomes 2, 5, and 6. It is important to note that the Methods section for this outcome (Outcome 6, Question 6d) can be found in Appendix A of Outcome 2, Question 2a.

Data sources

Major source(s): Literature review

Complementary Source(s): KPMG Provincial Network Evaluation Report 1

Introduction to Findings

A provincial inventory of research and researchers was created covering four pillars identified by the FASD-CMC: a) basic, b) clinical, c) population, and d) health. Each pillar was intended to capture FASD researchers and areas of research supporting these areas between 2001-2012 that could inform future FASD research in Alberta. The overall purpose of the inventory is to provide a baseline of FASD research capacity within Alberta to be used for future comparisons. All references cited in the following section can be found in the reference list additional sources can be found in the research inventory at the end of this section. The following definitions were used to guide our work within the four pillars:

Basic pillar focused on animal or neuroscience research in relation to the effects of prenatal alcohol exposure (PAE) on brain and function, as well as psychotropic treatment.

Clinical pillar focused on human research studies that examine diagnosis and assessment, intervention and supports, and program evaluation.

Population pillar focused on research that concerns the epidemiology and prevalence for incidence of FASD within the province, as well as prevention.

Health pillar focused on research involving health-related services and health factors relating to the mother or child affected by FASD.

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Pillar One: Basic Pillar

Summary of Basic Research

Three key research areas exist within the basic pillar, involving animal studies, human imaging, and psychotropic treatment (see Figure 1). Between 2001-2012, research within Alberta that is related to the basic pillar of research has shifted from a primary focus on the effects of PAE in animal research to also including human imaging studies. While animal studies (e.g., those involving rodents) were conducted throughout the past 10 years, our search revealed no current program of research using animal studies. An emerging trend in human imaging holds a greater presence in the province at present; for example, the program of DTI studies at the University of Alberta, led by C. Beaulieu, has received sustained funding over the past 5 years from federal bodies (e.g., Natural Science and Engineering Research Council [NSERC], Canadian Institute for Health Research (CIHR), NeuroDevNet) and local organizations (e.g., Womens and Children’s Health Research Institute [WCHRI]), and includes efforts to collaborate with other FASD researchers nationally (e.g., NeuroDevNet Demonstration Project). The research outcomes at the University of Calgary that attempt to address psychotropic treatment have been somewhat limited to date and have not involved clinical trials. It appears that the basic researchers have conducted research independently of one another, with evidence of collaboration limited to the national level. This type of research has been typically funded by Canada’s federal funding agencies such as CIHR and NSERC, or provincial funding agency Alberta Innovates Health Solutions (AIHS).

Figure 1. Research tends for Alberta-based basic research publications and presentations.

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I. Animal studies: Exploration of in utero alcohol exposure

Animal studies between 2002 and 2011 have focused on the effects of in utero exposure to alcohol, yet no current programs of research were revealed by our search. Basic research using animal models has been conducted at the University of Alberta and has attempted to inform our understanding of the negative effects of prenatal ethanol (alcohol) exposure at different stages during pregnancy. Studies conducted in the Department of Psychology have shown that prenatal ethanol exposure impedes cell survival early on; for example, studies by Sylvain et al. reported that even very early prenatal ethanol exposure can interfere with muscle fibers and motor neurons and can have implications for later development of motor function. Research conducted in the Division of Anatomy at the University of Alberta in collaboration with the College of Medicine Texas has explored the risks associated with drinking during the preconception period, revealing links to lower gestational birth weight of offspring5 and suggesting that educating women about the risks of drinking during preconception planning is important for the health and well-being of their babies. This research has been funded by Canada’s federal funding agencies such as CIHR and NSERC.

2. Human imaging: Detection of prenatal alcohol exposure

One Alberta program of research focuses on identifying differences in white matter track development in individuals with FASD and their relationship to function using Diffusion Tensor Imaging (DTI). This program involves the Department of Biomedical Engineering and the Peter S. Allen MRI Research Centre located at the University of Alberta and the Glenrose Rehabilitation Hospital FASD Clinic. DTI is a magnetic resonance imaging (MRI) technique used to provide a sensitive measure of abnormalities in brain white matter structure that is necessary for cognitive function.6 The goal of the program is to identify developmental brain differences in children with FASD as compared to children not exposed to alcohol in utero.7 In addition to tracking long-term changes, these ongoing studies address relations between structural brain abnormalities and child functioning by correlating brain differences with math ability,8 and cognitive abilities.6 In collaboration with other FASD research sites across Canada (i.e., Queens University, University of British Columbia, and the University of Manitoba), DTI is being linked to eye tracking, genetic markers, and cognitive abilities as part of a trans-Canada FASD Demonstration Project through NeuroDevNet. 9

3. Psychotropic treatment: Towards effective treatments

Psychotropic treatments to address behavioural and emotional symptoms in children with FASD have been explored, yet are limited by small sample sizes and lack of clinical trials. One study by Doig, McLennan, and Gibbard10 conducted a retrospective file review on a small sample (n = 27) of children diagnosed with FASD and ADHD referred for medication treatment at a clinical service in Calgary, Alberta. Key findings confirmed that inattention symptoms in children with FASD are less responsive to ADHD medications.10 However, no known clinical trials have been conducted in Alberta, and research has been limited to ADHD symptoms in children with FASD.

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Potential Areas for Future Research within Basic Pillar

Our search revealed areas within the basic pillar where, in our view, future Alberta-based research would be required to address outstanding issues related to FASD. These include:

Conduct research that could support strategic planning for interventions.

Continue to expand imaging/animal research to detect the effects of PAE in adults with FASD.

Examine effective psychotropic treatment for behavioural and emotional issues through retrospective studies on larger samples or clinical trials.

Pillar Two: Clinical Pillar

Summary of Clinical Research

Four key research areas exist within the clinical pillar, reflecting diagnosis and assessment, informing clinical practice, access to services and supports, and development of interventions and services (see figure 2). Between 2002 and 2012, clinical research began with diagnosis and assessment – specifically to find tools for identifying cases of FASD – and has continued to expand into related areas. Areas revealed by our search involve informing clinical practice (e.g., Benz, Rasmussen, & Andrew11), supports and services (e.g., Baugh, Pei, Andrew, & Rasmussen12; Walls, Rasmussen, Pei, & Henneveld13), and interventions (e.g., Denys, et al.14). There has also been a shift in focus from assessment and diagnosis to emphasizing diagnosis and intervention planning. This is largely evident in follow-up studies on children diagnosed with FASD, which have been conducted by Dr. Carmen Rasmussen and Dr. Jacqueline Pei and Glenrose Rehabilitation Hospital FASD Clinic and also lead by Audrey McFarlane and Lakeland FASD Clinic (e.g., Kully-Martens et al.15; Rasmussen, Andrew, Zwaigenbaum, & Tough16; McFarlane et al.17). Hence, the focus of clinical research has become less on identifying cases and more on providing a diagnostic and assessment service intended to meet the needs of the individual affected by FASD.

These studies have identified a gap between diagnosis and referral to services that can meet the needs of individuals with FASD and their families. Further, a lifespan focus has emerged, recognizing that the needs of individuals affected by FASD require continued support and a clinical framework for identification in adulthood. Hence, diagnosis and assessment research now includes adults;18 for example, increases in program evaluations for diagnostic services such as the Glenrose Rehabilitation Hospital Pilot Adult Clinic are currently being conducted.19 Research is also beginning to recognize needs of individuals with FASD who are involved in the adult justice system, as evident in the 3C’s Project which was designed, delivered and evaluated by the Faculty of Occupational Therapy at the University of Alberta.20 Overall, the University of Alberta, the Glenrose Rehabilitation Clinic, and the Lakeland FASD Clinic have conducted the majority of research in this pillar with some independent contributions by researchers located at the University of Calgary. Generally, most clinical research has operated through individuals working within FASD clinics as health care professionals or members with direct affiliations with FASD clinics hence this research has the capacity to directly inform clinical practice. Funding support has been provided through multiple sources including local funding (e.g., AIHS, The Centre,

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Glenrose Hospital Research Fund), federal agencies (e.g., CIHR), and national funders (e.g., Canadian Foundation of Fetal Alcohol Research [CFFAR], NeuroDevNet).

Figure 2. Research trends for Alberta-based clinical research publication and presentations.

1. Diagnosis and assessment

Research studies on assessment and diagnosis have primarily focused on children and adolescents with suspected PAE, and more recently on adults. Such a program of research currently exists at the University of Alberta, Department of Pediatrics which is directly affiliated with the Glenrose Rehabilitation Hospital FASD Clinical Services. This program of research also involves Dr. Jacqueline Pei, University of Alberta. Research has reported on the spectrum of impairments exhibited by children and adolescents with FASD based on clinical data and recruited participants previously diagnosed by the Glenrose FASD Clinical Services team. The program has recently completed a follow-up study on outcomes for children diagnosed by the team in past years. Research has contributed to identifying the breadth of deficits associated with FASD (e.g. Rasmussen et al. 21; Bell et al.22). These studies have also examined neurobehavioral functioning in children affected by FASD as compared to controls on a variety of tools including the Delis-Kaplan Executive Functioning System (D-KEFS),23 the CANTAB (a computerized measure of cognition), the Behavior Rating Inventory of Executive Function (BRIEF), the Adaptive Behavior Assessment System – Second Edition (ABAS-II),14 and the NEPSY-II (test of neurocognitive functioning).27 Some of these tools have also been used to study brain function in children affected by FASD, both with and without a comorbid behavioural disorder. These studies have the capacity to directly inform practice since they have verified the effectiveness of a variety of tools

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that can be used by the FASD Clinic to identify neurobehavioural impairments in children with FASD. Further, research partnerships have evolved across departments (i.e., Department of Educational Psychology and the Centre for Neuroscience at the University of Alberta), provincially (i.e., University of Alberta, University of Calgary), and nationally (i.e., University of Queens, University of British Columbia, University of Toronto, McGill University, and NeuroDevNet FASD Demonstration Project). This research program has been funded by provincial funding agencies (i.e., The Centre), federal funding agencies (i.e., CIHR), and national funding agencies seeking FASD as priority research (i.e., NeuroDevNet, CFFAR).

Other programs of research in diagnosis and assessment include the Lakeland FASD Clinic, which has conducted clinical research. Research has been conducted based on existing clinical data. For example, Lakeland recently completed a follow-up of the evaluation (diagnostic service) of children and adolescents seen by the clinic during the previous 10 years, to examine their cognitive profile, address diagnostic issues with referral, and follow up on the family’s satisfaction with the process and helpfulness of the assessment, access to services, as well as impact of the assessment in adulthood.17 This research program has also collaborated on neurodevelopment research with the University of Alberta and Glenrose FASD Clinic, and the NeuroDevNet FASD Demonstration Project led by Queens University (see Reynolds et al.9). Diagnosis and assessment studies have also been independently conducted through the University of Calgary, focusing on comparing children with FASD and children diagnosed with Attention Deficit Hyperactivity Disorder (ADHD). These studies have made comparisons between motor abilities (e.g., Kooistra, Crawford, Gibbard, Ramage, & Kaplan29) and compared attention difficulties30 in children with FASD and ADHD for potential use in differential diagnosis. They have also examined differences in referrals made by health professionals to mental health services for children with FASD as compared to children with ADHD.31

In addition to studies with children and adolescents, research conducted on adult FASD diagnosis and assessment has emerged in response to the identified needs of adults affected by PAE.18 The University of Alberta, Department of Educational Psychology, in collaboration with the Glenrose Rehabilitation Hospital FASD Adult Clinical team is supporting a research evaluation of a model for adult FASD assessment, funded by the Institute of Health Economics (IHE) through to 2013. Thus far, this research has examined the utility of facial dysmorphology for diagnostic assessment of adults with FASD through conducting follow-up studies on adults with FASD clinically referred as children or adolescents to examine stability of features over time. A further study has extended research examining the stability of cognitive impairment in adults with suspected PAE. The evaluation component will report on service delivery by following up adults with suspected PAE seen through the clinic, and the impact of services on quality of life.

2. Informing clinical practice

Research guiding FASD assessment and diagnosis in Alberta has reported on different models of practice. For example, research reported by Directors of Alberta FASD Clinics has reviewed models of practice such as International Classification of Functioning applied to FASD;32 and rural assessment and diagnostic practice.33 Similarly, institutions working with clinics or systems serving individuals with FASD have reported on community-based practice,34 diagnostic guidelines (e.g. Benz et al.11); intervention

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recommendations (e.g. Baugh et al.12); as well as reviews on the general literature that can assist in increasing understanding of FASD (e.g., Pei, Denys, Hughes, & Rasmussen35; Kully-Martens, Denys, Treit, Tamana, & Rasmussen36).

3. Access to services and supports

A recently emerging trend in the clinical FASD literature has been determining whether diagnosis has successfully met the needs of individuals and families affected by FASD. Research conducted by the University of Alberta Department of Pediatrics and the Glenrose Rehabilitation Hospital funded by CIHR followed up with PAE and FASD children (n = approx. 75) who were assessed at the Glenrose Rehabilitation Hospital FASD Clinic. The project has examined outcomes of children diagnosed with FASD, and services utilization,15 and the impact on the family (e.g., Rasmussen37). As previously mentioned, the Lakeland Clinic has also followed up the first 100 patients diagnosed through their clinic in the past 10 years.17

4. Implementation of interventions and services

Faculty members at the University of Alberta are currently developing and evaluating interventions and supports for school-aged children and adolescents with FASD. Researchers within the Department of Educational Psychology have previously evaluated successful strategies for effective communication that can lead to positive impacts for students with FASD, their class, and their teachers. Currently, the Department of Educational Psychology in collaboration with Sandra Swaffield of the Wellness, Resilience and Partnership project (WRaP),40 is evaluating a collaborative professional learning process funded by Alberta Advisory Committee for Educational Studies (AACES) to foster reflection, communication, and action in teachers and educational assistants to better support each other and children with FASD.41 Researchers at the University of Alberta Departments of Pediatrics and Educational Psychology are in the process of evaluating the McDaniel Youth Program13 run by Catholic Social Services (Edmonton), which is a community-based mentorship program targeting social skills, strengths, and adaptive skills of adolescents with FASD to support successful transitions into adulthood.

Furthermore, continual supports and transition planning has extended to individuals with FASD involved in forensic programs, such as the FASD Youth Justice Support Program (demonstration project) based in Edmonton (e.g. Yuzwenko & Stroppel42). Formal evaluations of adult justice programs for individuals with FASD are emerging; for example, a study presented by O’Riordan et al.43 conducted in the Department of Educational Psychology in collaboration with the Northwest Central Alberta FASD Services Network is presently examining a supportive, FASD-informed approach for working with adults involved in the Alberta justice system. In addition, the University of Alberta, Department of Occupational Therapy recently designed, delivered and completed an evaluation of the 3C’s correction program funded by the Ministries of Health and Seniors.20

Interventions for remediating brain function have been developed and evaluated by researchers in the University of Alberta Departments of Educational Psychology and Pediatrics. These studies have piloted a computerized executive function intervention conducted in collaboration with the University of

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Victoria and funded by federal agencies;44 math intervention driven by The Centre; and examined the benefits of memory rehearsal training strategies.45

Potential Areas for Future Research within Clinical Pillar

Our search revealed areas within the clinical pillar where, in our view, future Alberta-based research would be required to address outstanding issues related to FASD. These include:

Increase understanding about the lifespan course of FASD in Alberta and Canada through further follow-up studies into adulthood to support strategic planning.

Continue to explore application of universal school-based programs developed for children with disabilities to children with FASD.

Identify tools for detecting impairments in adults with FASD using clinical data and recruiting previously assessed individuals.

Follow up the evaluation for clients assessed at clinics across Alberta, making cross-clinic comparisons and utilizing findings for improving clinical services.

Examine how to better integrate diagnosis and intervention services.

Address secondary disabilities associated with FASD and strategies to reduce adverse outcomes.

Pillar Three: Population Pillar

Summary of Population Research

Population research in Alberta has encompassed both the cost and prevalence of FASD and prevention-related research (see figure 3). Under the direction of Dr. Egon Jonsson, IHE has driven research on the cost and prevalence of FASD, reporting an incidence of FASD in Alberta similar to those reported for Canada (see CMC website46). As stated in the CMC meeting minutes, a more accurate study on the incidence of FASD in Alberta is currently underway to assist strategic planning for effective prevention of FASD in Alberta. Based on the present incidence of FASD in the province, a high annual cost is estimated between $48 and $143 million yearly over the short-term in Alberta and should provide a benchmark for effectiveness of prevention activities presently being developed.47

Prevention and awareness strategies involve three levels of prevention: primary, secondary, and tertiary. Primary strategies are aimed at increasing general awareness about the harms of drinking during pregnancy; secondary strategies are aimed at informing pregnant women to not drink during pregnancy; and tertiary strategies are aimed at women at high risk of giving birth to a child with FASD. Prevention and awareness research has been conducted at the University of Calgary and University of Lethbridge, and is primarily completed at the primary (e.g., Deshpande et al.48) and secondary levels (e.g. Tough et al.49,50) and to a lesser extent at the tertiary level. Earlier studies have focused on the awareness of women and health care professionals of the negative effects caused by drinking during pregnancy. For example, Tough et al. conducted a number of studies examining health care practices

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and recommendations made to women around drinking during pregnancy and planning for pregnancy. The direction of awareness research has adjusted in response to secondary prevention research toward identification and development of strategies that could increase women’s awareness of the dangers associated with consuming alcohol during pregnancy (e.g. Deshpande et al.48). Funding sources for research on prevalence and cost have been directed and provided by the IHE, whereas research on awareness and prevention of FASD in Alberta has been driven by The Centre and conducted in collaboration with institutions across the province as well as the CanFASD Network Action Team.

Figure 3. Research trends for Alberta-Based Population Research Publications and Presentations.

I. Cost and prevalence of FASD in Alberta

The IHE has funded research on the cost and prevalence of FASD in Alberta. In one such study, the estimated economic cost of FASD in Alberta in the long-term was reported to rise from $130 to $400 million yearly.47 Although no scientific study on the incidence of FASD presently exists,47 the incidence of FASD in Alberta has been estimated in a number of documents published by the Government of Alberta (CMC website46). These documents have reported similar incidence rates in Alberta to those documented elsewhere in Canada,47 with estimated rates of FAS and FASD of 1-3 and 3-9 per 1000 live births, respectively.47 A study by Thanh and Jonsson52 reported on the prevalence of drinking alcohol during pregnancy in Canada, based on information from the Canadian Community Health Survey (CCHS) completed by residents living in British Columbia and Ontario; estimates were 5.4% in Canada. Currently, a scientific study on the incidence of FASD in Alberta is being conducted by IHE as part of an initiative to contribute to the knowledge base for effective prevention of FASD.53 This research involves an

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epidemiological study that aims to identify the incidence of FASD based on retrospective health files from residents of Alberta between 2002-2012.

2. Prevention and awareness of FASD

FASD prevention and awareness research in Alberta has been primarily driven by The Centre, in collaboration with researchers at three Alberta-based institutions. A literature search on prevention activities conducted by the University of Lethbridge reported on three categories of prevention activities that cover primary, secondary, and tertiary levels.48

Primary level prevention strategies are aimed at promoting awareness of the harmful effects of maternal alcohol consumption that involve educational, legal, and community-based programs.48 In a study driven by The Centre based on an Alberta sample,54 a gap was identified in women’s awareness concerning knowledge about the link between risk of maternal alcohol consumption and having a child with FASD, and also a no-alcohol during pregnancy policy. However, the population sampled was not representative of both rural and urban areas and this may be important to consider in future studies to establish areas where Alberta prevention activities would be most usefully implemented. A critical review conducted by the University of Lethbridge identified a gap in use of social strategies to promote prevention.48 A program of research is presently being conducted by the CanFASD Research Network in collaboration with the University of Lethbridge on developing social change strategies to prevent further incidence of FASD.48 One research direction that may offer important insight would be to evaluate the impact of current prevention efforts in Alberta.

Secondary level prevention strategies are aimed at screening for alcohol use during pregnancy and informing pregnant women of the dangers involved in drinking during pregnancy. Secondary strategies have been examined by a team of researchers at the University of Calgary driven by The Centre. Firstly, this research has focused on the use of secondary prevention strategies to help educate women not to drink during pregnancy. For example, a number of studies have been conducted to evaluate opportunities through preconception counseling and physician’s recommendations regarding alcohol consumption during pregnancy. Secondly, these studies have explored opportunities for using screening tools to identify use of alcohol during pregnancy. For example, a survey conducted on a sample of expectant mothers on their attitudes to universal screening for substance and alcohol use during pregnancy demonstrated that women were more likely to comply if treatment and programs were made available58 Finally, this research has examined screening of meconium for fatty acid ethyl esters (FAEEs) as a method for detecting infants at risk for deficits associated with PAE.59

Tertiary level prevention strategies are aimed specifically at women who are at high risk of giving birth to a child with FASD, such as government-funded projects and services that exist in Alberta (see CMC website46) and are implemented to support the needs of mothers at risk for giving birth to a child with FASD. Research has been conducted at the University of Alberta and University of Calgary, and is primarily driven by the Centre. The University of Alberta in collaboration with the University of Calgary conducted an evaluation of the First Steps Program modeled on the Parent-Child Assistance Program (PCAP), which assessed the effectiveness of the community-based program for women at risk for giving birth to a child with FASD. The evaluation examined whether the program resulted in improved

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outcomes in terms of birth control, alcohol use, subsequent pregnancy upon exiting the program.37 The team further evaluated the effectiveness of program and the role of mentors and advocates in providing support to parents affected by FASD enrolled Step by Step program.14 Further, the University of Calgary evaluated factors leading to increased likelihood of retaining guardianship for a pregnant mother using substances and enrolled in a home visitation program. Findings from this study suggested that targeted programs could best support mothers to retain guardianship of their infant through assisting their clients to address their social and health needs.60 It would appear that ‘best practices’ for parent-child programs have been reported on – for example, the McMan Youth, Family, and Community Services PCAP program (e.g., Ormstrup, van Vugt, & Johansson61) and the Lakeland applied PCAP program.62 The Lakeland Clinic has also examined evaluation tools for prevention programs.62 However, programs and services (or FASD demonstration projects) in Alberta formal evaluation has been limited and this is important in understanding where the needs of individuals and families affected by FASD have been successfully met.

Potential Areas for Future Research within Population Pillar

Our search revealed areas within the population pillar where, in our view, future Alberta-based research would be required to address outstanding issues related to FASD. These include:

Compare and contrast awareness of FASD between rural and urban areas to inform strategic planning for prevention strategies.

Continually evaluate the impact of prevention and awareness strategies implemented in Alberta in increasing public awareness and reducing drinking during pregnancy

Monitor and evaluate all prevention programs in Alberta targeting mothers at risk for giving birth to a child with FASD such as PCAP.

Pillar Four: Health Pillar

Summary of Health Research

Research within the health pillar has focused on evaluating health programs and services for individuals and families affected by FASD and has focused on supports for families caring for a child with FASD (see figure 4). Research and evaluation on health programs and services has been driven primarily by The Centre and has targeted strategic planning within the province of Alberta. It appears that independent studies evaluating health programs and services have not been explored. The primary focus of the existing research is to evaluate the effectiveness of services that involve children, mothers, and caregivers affected by FASD. These programs aim to provide effective support for meeting individual needs of children affected by FASD living in care. The University of Calgary has examined strategies to increase support for children living in care63 and in collaboration with the University of Alberta has examined access to and impact of respite services.64 Other independent contributions made by the University of Alberta has examined the positive impact of family intervention programs.65 Increased research is needed to evaluate existing programs and services (demonstration projects) in order to assess how the individual needs of children and families with FASD are being met by existing programs.

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Most health research studies have been conducted at the University of Calgary or in collaboration with faculty members at the University of Alberta.

Figure 4. Research Trends for Alberta Based Health Research Publications and Presentations.

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Supports for families caring for a child with FASD

The University of Calgary has led evaluations of government programs serving children in care and/or with a childhood disability to assess their capacity to provide support for individuals and families affected by FASD, with contributions made by researchers at the University of Alberta. A study by Badry and Pelech66 conducted within the Faculty of Social Work evaluated the impact of the Promising Practices Network (PNN), implemented by Alberta Children and Youth Services, on increasing capacity for responding to the needs of children with FASD in care. The findings revealed that Alberta Children and Youth Services would be able to respond differently to the needs of children with FASD when increased support; reduced caseloads; and increased contact between caseworkers, children, and foster parents or caregivers are in place.66 Research conducted in the University of Calgary’s Department of Community Health Sciences in collaboration with the University of Alberta has examined access to respite services for caregivers of children with developmental difficulties such as FASD.64 Their research has also examined the positive impact that respite services may have on the mental health of children with FASD, although no significant improvements reported suggesting that children with FASD require integrated respite and mental health services to meet their needs.67 Further, In a study conducted at the University of Alberta,65 evaluated the positive impact the coaching families (CF), a program ran by Catholic Social Services, has upon families affected by FASD. Based on retrospective analysis of data their findings revealed a significant decrease in needs and increase in goal attainment and overall reduction in parental stress.65 However, further research is required to increase understanding around the benefits and types of support services families and children affected by FASD require.

Potential Areas for Future Research within Health Pillar

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Our search revealed areas within the health pillar where, in our view, future Alberta-based research would be required to address outstanding issues related to FASD. These include:

Assess where the needs of individuals and families affected by FASD have been successfully met by intervention and programming currently implemented in Alberta.

Monitor and evaluate all FASD-related health programs and services (demonstration projects) that exist in Alberta, including evidence-based programs.

Increase culturally sensitive supports and programs to enhance accessibility for all Alberta residents affected by FASD who are in need.

Conclusions

Our findings indicate that there is both research and researcher capacity within Alberta, yet it is limited in its focus. Based on our search, we conclude that the areas of focus of FASD research in Alberta within the years 2002-2012 have primarily targeted the clinical pillar, followed by health, population, and basic pillars (see figure 5). Our findings suggest that this is logical given the primary focus on identifying cases of FASD (which falls within the clinical pillar). It has only been following the identification of cases that research has expanded to include intervention research (which falls within clinical and health pillars). Research and researcher capacity is evident across the four pillars and hence FASD research in Alberta has the potential to inform future programs of research expanding on the four pillars and utilize researchers who have been identified for their contributions to the overall FASD literature. Future research would be required to address existing gaps in the literature in order for research within each pillar conducted in Alberta to best support strategic planning.

Further, we identified that FASD research and researcher capacity requires a network of partnerships that includes connections between departments within institutions, between institutions, and between institutions and clinics. Dual roles held by FASD researchers and FASD research-practitioners were identified to involve institutions, clinics, and FASD-related organizations, such that institution-based FASD researchers also held roles as FASD clinicians or direct affiliations with FASD clinics or FASD-related organizations (e.g., CanFASD). Similarly, FASD research-practitioners also held direct affiliations with institutions or FASD-related organizations (e.g., CanFASD, CMC). Clinical and health research in Alberta has been driven by The Centre, and clinical research has also been funded widely by other federal sources (e.g., CIHR), local sources (e.g., AIHS, IHE), and national sources (e.g., CFFAR, NeuroDevNet). Population research has been funded by IHE and although research on the cost and prevalence of FASD in Alberta has been led by IHE under the direction of IHE board members, research on prevention of FASD in Alberta has been institution-led and supported by CanFASD.

Figure 5.Number of peer reviewed publications and presentations in Alberta covering all four basis pillars.

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Summary

There is good evidence that our capacity to respond to emerging research needs in FASD strategic planning is growing.

Research accomplishments have been achieved based on the combined efforts of researchers, institutions, clinics, and policy makers.

Most Alberta-based FASD research falls within the clinical pillar, followed by health, population, and basic pillars.

There exists growth in Alberta-based research accomplishments as evident in changes in research trends within each pillar over the past five years.

Within the clinical pillar, a large portion of this research is community-based research. A significant expansion of clinical research has emerged to include FASD intervention across the lifespan, thus indicating an accomplishment in connecting research to community-based programs and services.

Health research has responded well to FASD programs and services which highlights capacity to evaluate early intervention and support services specifically tailored toward individuals and families affected by FASD.

Population research has continually grown to provide reliable research on FASD cost, prevalence, and prevention in Alberta, hence providing a platform for informing strategic planning.

Basic research in the past 5 years has seen increase in brain imaging research imperative to increased understanding about FASD.

Recommendations

Build partnerships between institutions and FASD clinics to generate research that can directly inform practice.

Conduct research to improve clinical services through targeting diagnostic outcomes towards identifying needs and interventions rather than focusing entirely on identification.

Recruit institution-based researchers to evaluate programs (demonstration projects) funded within the province irrespective of their existing evidence basis and services referred to by clinicians to understand how the needs of individuals and families with FASD are being met.

Expand research within Alberta to cover all four basic pillars evenly as relevant and appropriate to strategic planning within Alberta.

313

Considerations for Year 7 Evaluation

Build on the current inventory by conducting a systematic search of research and researchers based in Alberta in Year 7 and compare this to provinces across Canada.

314

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Research Inventory

Published Referred Papers by Alberta-Based Researchers in the last 5 years

Abele-Webster, L., Magill-Evans, J., & Pei, J. (2012). Sensory Processing and ADHD in Children with Fetal Alcohol Spectrum Disorder. Canadian Journal of Occupational Therapy, 1, 79. Available Online.

Badry, D. (2009). Fetal Alcohol Spectrum Disorder Standards: Supporting children in the care of children’s services. First Peoples Child and Family Review, 4(1), 47-56.

Bell, S.H., Stade, B., Reynolds, J.N., Rasmussen, C., Andrew, G., Hwang, P.A.,& Carlen, P.L. (2010). The remarkable high prevalence of epilepsy and seizure history in Fetal Alcohol Spectrum Disorders. Alcoholism: Clinical and Experimental Research, 34, 1084-1089.

Benz, J., Rasmussen, C., & Andrew, G. (2009). Diagnosing fetal alcohol spectrum disorder: History, challenges and future directions. Paediatrics & Child Health, 14(4), 231-237.

Clarke, M., Tough, S. C., Hicks, M., & Clarren, S. (2005). Approaches of Canadian providers to the diagnosis of fetal alcohol spectrum disorders.Journal of Fetal Alcohol Syndrome International, 3, e2.

Denys, K., Rasmussen, C., & Henneveld, D. (2011). The effectiveness of a community-based intervention for parents with FASD. Community Mental Health Journal, 47(2), 209-219. doi:10.1007/s10597-009-9273-9

Deshpande, S., Basil, M., Basford, L., Thorpe, K., Piquette-Tomei, N., …, Droessler, J., & Bureau, A. (2005). Promoting alcohol abstinence among pregnant women: Potential social change strategies. Health Marketing Quarterly, 23(2), 45-67.doi:10.1300/J026v23n02_04

Doig, J., McLennan, J. D., & Gibbard, W. B. (2008). Medication effects on symptoms of attention- deficit/hyperactivity disorder in children with fetal alcohol spectrum disorder. Journal of Child and Adolescent Psychopharmacology, 18(4), 365-371. doi:10.1089/cap.2007.0121

Doig, J., McLennan, J. D., & Urichuk, L. (2009). ‘Jumping through hoops’: parents experiences with seeking respite care for children with special needs. Child: Care, Health, and Development, 35(2), 234-42. Doi: 10.1111/j.1365-2214.2008.00922.x

Goez, H. R., Scott, O., & Hasal, S. (2011). Fetal exposure to alcohol, developmental brain anomaly, and vitamin a deficiency: A case report. Journal of Child Neurology, 26(2), 231-234. doi:10.1177/0883073810380458

Green, C. R., Mihic, A. M., Brien, D. C., Armstrong, I. T., Nikkel, S. M., Stade, B. C., & Reynolds, J. N. (2009a). Oculomotor control in children with fetal alcohol spectrum disorders assessed using a mobile eye-tracking laboratory. The European Journal of Neuroscience, 29(6), 1302-1309. doi:10.1111/j.1460-9568.2009.06668.x

Green, C. R., Mihic, A. M., Nikkel, S. M., Stade, B. C., Rasmussen, C., Munoz, D. P., & Reynolds, J. N. (2009b). Executive function deficits in children with fetal alcohol spectrum disorders (FASD) measured using the cambridge neuropsychological tests automated battery (CANTAB). Journal of Child Psychology and Psychiatry, and Allied Disciplines, 50(6), 688-697. doi:10.1111/j.1469-7610.2008.01990.x

Hamilton, D. A., Kodituwakku, P., Sutherland, R. J., & Savage, D. D. (2003). Children with fetal alcohol syndrome are impaired at place learning but not cued-navigation in a virtual morris water task. Behavioural Brain Research, 143(1), 85-94.

Hicks, M., Sauve, R. S., Lyon, A. W., Clarke, M., & Tough, S. (2003). Alcohol use and abuse in pregnancy: An evaluation of the merits of screening. The Canadian Child and Adolescent Psychiatry Review, 12(3), 77-80.

Hicks M, & Tough S. (2009a). The importance of complete abstinence from alcohol before and during pregnancy: enough evidence for justification? Expert Review of Obstetrics & Gynecology, 5(4), 401-

319

414. Hicks, M., Tough, S. C., Premji, S., Benzies, K., Lyon, A. W., Mitchell, I., & Sauve, R. (2009b). Alcohol and

drug screening of newborns: Would women consent? Journal of Obstetrics and Gynaecology, 31(4), 331-339.

Hutcheon, E., McLennan, J. D., & Urichuk, L. (2011). Changes in Mental Health Status of Young Children Participating in a Respite Service. Journal of the Canadian Academy of Child and Adolescent Psychiatry, 20(2), 120-126.

Kully-Martens, K., Denys, K., Treit, S., Tamana, S., & Rasmussen, C. (2011). A Review of Social Skills Deficits in Children with Fetal Alcohol Spectrum Disorders and Prenatal Alcohol Exposure: Profiles, Mechanisms, and Interventions. Alcoholism: Clinical and Experimental Research, 36(4), 568-576.

Kully-Martens, K., Pei, J., Job, J., & Rasmussen, C. (2012).Source monitoring in children with and without fetal alcohol spectrum disorders. Journal of Pediatric Psychology, Availble Online doi: 10.1093/jpepsy/jsr123

Kooistra, L., Crawford, S., Gibbard, B., Ramage, B., & Kaplan, B. J. (2010). Differentiating attention deficits in children with fetal alcohol spectrum disorder or attention-deficit-hyperactivity disorder. Developmental Medicine and Child Neurology, 52(2), 205-211.

Kooistra, L., Ramage, B., Crawford, S., Cantell, M., Wormsbecker, S., Gibbard, B., & Kaplan, B. J. (2009). Can attention deficit hyperactivity disorder and fetal alcohol spectrum disorder be differentiated by motor and balance deficits? Human Movement Science, 28(4), 529-542. doi:10.1016/j.humov.2009.01.007

Lebel, C., Rasmussen, C., Wyper, K., Andrew, G., Beaulieu, C. (2010). Brain micro-structure is related to math ability in children with fetal alcohol spectrum disorder. Alcoholism: Clinical and Experimental Research, 34, 354-363.

Lebel, C., Rasmussen, C., Wyper, K., Walker, L., Andrew, G., Yager, J., & Beaulieu, C. (2008). Brain diffusion abnormalities in children with fetal alcohol spectrum disorder. Alcoholism, Clinical and Experimental Research, 32(10), 1732-1740. doi:10.1111/j.1530-0277.2008.00750.x

Leenaars, L., Denys, K., Henneveld, D., & Rasmussen, C. (2012). The Impact of Fetal Alcohol Spectrum Disorders on Families: Evaluation of a Family Intervention Program. Community Mental Health Journal, 48(4): 431-435

Livy, D. J., & Elberger, A. J. (2008). Alcohol exposure during the first two trimesters-equivalent alters the development of corpus callosum projection neurons in the rat. Alcohol, 42(4), 285-293. doi:10.1016/j.alcohol.2008.04.002

Livy, D. J., Maier, S. E., & West, J. R. (2004a). Long-term alcohol exposure prior to conception results in lower fetal body weights. Developmental and Reproductive Toxicology, 71(3), 135-141. doi:10.1002/bdrb.20007

Livy, D. J., Miller, E. K., Maier, S. E., & West, J. R. (2003). Fetal alcohol exposure and temporal vulnerability: Effects of binge-like alcohol exposure on the developing rat hippocampus. Neurotoxicology and Teratology, 25(4), 447-458.

Livy, D. J., Parnell, S. E., & West, J. R. (2004b). Blood ethanol concentration profiles: a comparison between rats and mice. Alcohol, 29(3), 165–171.

Loomes, C., Rasmussen, C., Pei, J., Manji, S., & Andrew, G. (2008).The effect of rehearsal training on working memory span of children with fetal alcohol spectrum disorder. Research in Developmental Disabilities, 29(2), 113-124. doi:10.1016/j.ridd.2007.01.001

Manji, S., Pei, J., Loomes, C., & Rasmussen, C. (2009).A review of the verbal and visual memory impairments in children with foetal alcohol spectrum disorders. Developmental Neurorehabilitation, 12(4), 239-247.

McFarlane, A. (2011). Fetal Alcohol Spectrum Disorder in Adults: Diagnosis and Assessment by a Multidisciplinary Team in a Rural Area. Canadian Journal of Rural Medicine, 16(1), 25-30.

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McFarlane, A., & Rajani, H. (2007). Rural FASD diagnostic services model: Lakeland centre for fetal alcohol spectrum disorder. The Canadian Journal of Clinical Pharmacology, 14(3), e301-6.

Mills, R. M. T., McLennan, J. D., & Caza, M. M. (2006). Mental Health and Other Service Use by Young Children with Fetal Alcohol Spectrum Disorder. Journal of Fetal Alcohol Research International, 4, 2-11.

Mills, R. M. T., Seiver, J. E., Hicks, M., Badry, D., Tough, S. C., & Benzies, K. (2009). Child Guardianship for a Canadian Home Visitation Program For Women Who Use Substances in the Perinatal Period.Canadian Journal of Clinical Pharmacology, 16(1), e126-e129.

Nardelli, A., Lebel, C., Rasmussen, C., Andrew, G., Beaulieu, C. (2011). Extensive deep gray matter volume reductions in children and adolescents with fetal alcohol spectrum disorders. Alcoholism: Clinical and Experimental Research, 35, 1404-1417.

Pei, J., Badry, D., Wight-Felske, A. (2010). The Alberta Scene on Fetal Alcohol Spectrum Disorder (FASD) – Focus on Children and Youth. Journal for Services to Children and Families, 2, 24-28.

Pei, J., Denys, K., Hughes, J., & Rasmussen, C. (2011a). Mental health issues in fetal alcohol spectrum disorder. Journal of Mental Health, 20(5), 438-448. doi:10.3109/09638237.2011.577113

Pei, J., Job, J., Kully-Martens, K., & Rasmussen, C. (2011b). Executive function and memory in children with fetal alcohol spectrum disorder. Child Neuropsychology, 17(3), 290-309.

Pei, J. R., Rinaldi, C. M., Rasmussen, C., Massey, V., & Massey, D. (2008). Memory patterns of acquisition and retention of verbal and nonverbal information in children with fetal alcohol spectrum disorders. The Canadian Journal of Clinical Pharmacology, 15(1), e44-56.

Premji, S., Benzies, K., Serret, K., & Hayden, K. A. (2006). Research-based interventions for children and youth with a Fetal Alcohol Spectrum Disorder: revealing the gap. Child: care, health, and development, 33(4), 389-397.

Premji, S., & Semenic, S. (2009). Do Canadian prenatal record forms integrate evidence-based guidelines for the diagnosis of a FASD? Canadian Journal of Public Health, 100(4), 274-280.

Rasmussen, C. (2005). Executive functioning and working memory in fetal alcohol spectrum disorder. Alcoholism, Clinical and Experimental Research, 29(8), 1359-1367.

Rasmussen, C., Andrew, G., Zwaigenbaum, L., & Tough, S. (2008a). Neurobehavioral outcomes of children with Fetal Alcohol Spectrum Disorders: A Canadian perspective. Paediatric Child Health, 13, 185-191.

Rasmussen, C., Becker, M., McLennan, J., Urichuk, L., & Andrew, G. (2011a).An evaluation of social skills in children with and without prenatal alcohol exposure. Child: Care, Health and Development, 37(5), 711-718. doi:10.1111/j.1365-2214.2010.01152.x; 10.1111/j.1365-2214.2010.01152.x

Rasmussen, C., Benz, J., Pei, J., Andrew, G., Schuller, G., Abele-Webster, L., & Lord, L. (2010). The impact of an ADHD co-morbidity on the diagnosis of FASD. The Canadian Journal of Clinical Pharmacology, 17(1), e165-76.

Rasmussen, C., & Bisanz, J. (2011b). The relation between mathematics and working memory in young children with Fetal Alcohol Spectrum Disorders. The Journal of Special Education, 45(3), 184-191.

Rasmussen, C., & Bisanz, J. (2009a). Exploring mathematics difficulties in children with Fetal Alcohol Spectrum Disorders. Child Development Perspectives, 3, 125-130.

Rasmussen, C. & Bisanz, J. (2009b). Executive functioning in children with Fetal Alcohol Spectrum Disorder: Profiles and age-related differences. Child Neuropsychology. 15(3), 201-215.

Rasmussen, C., Horne, K. A., & Witol, A. (2006) Neurobehavioral functioning in children with Fetal Alcohol Spectrum Disorder. Child Neuropsychology, 12, 453-468.

Rasmussen, C., Kully-Martens, K., Denys, K., Badry, D., Henneveld, D., Wyper, K., & Grant, T. (2012a). The effectiveness of a community-based intervention program for women at-risk for giving birth to a child with fetal alcohol spectrum disorder (FASD). Community Mental Health Journal, 48(1), 12-21.

doi:10.1007/s10597-010-9342-0

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Rasmussen, C., McAuley, R., & Andrew, G. (2007a). Parental ratings of children with Fetal Alcohol Spectrum Disorder on the Behavior Rating Inventory of Executive Function (BRIEF). Journal of Fetal Alcohol Syndrome International, 5, 1-8.

Rasmussen, C., Pei, J., Manji, S., Loomes, C., & Andrew, G. (2009c).Memory strategy development in children with fetal alcohol spectrum disorders. Developmental Neurorehabilitation, 12(4), 207-214.

Rasmussen, C., Soleimani, M., & Pei, J. (2011c).Executive functioning and working memory deficits on the CANTAB among children with prenatal alcohol exposure.Journal of Population Therapeutics and Clinical Pharmacology, 18(1), e44-53.

Rasmussen, C., Talwar, V., Loomes, C., & Andrew, G. (2008b). Brief report: Lie-telling in children with fetal alcohol spectrum disorder. Journal of Pediatric Psychology, 33(2), 220-225. doi:10.1093/jpepsy/jsm069

Rasmussen, C., Tamana, S., Baugh, L., Andrew, G., Tough, S., & Zwaigenbaum, L. (2012b).Neuropsychological impairments on the NEPSY-II among children with FASD. Child Neuropsychology: A Journal on Normal and Abnormal Development in Childhood and Adolescence, Available Online doi:10.1080/09297049.2012.658768

Rasmussen, C., & Wyper, K. (2007b). Decision making, executive functioning, and risky behaviors in adolescents with prenatal alcohol exposure. International Journal on Disability and Human Development, 6(4), 369-382.

Rasmussen, C., Wyper, K., & Talwar, V. (2009d).The relation between theory of mind and executive functions in children with fetal alcohol spectrum disorders.The Canadian Journal of Clinical Pharmacology, 16(2), 370-80.

Reynolds, J.N., Weinberg, J., Clarren, S., Beaulieu, C., Rasmussen, C., Kobor, M., Dube, M.P., & Goldowitz, D. (2011). Fetal Alcohol Spectrum Disorders: Gene-environment interactions, predictive biomarkers, and the relationship between structural alterations in the brain and functional outcomes. Seminars in Pediatric Neurology, 18(1), 49-55.

Robin, T., Cismaru, M., Deshpande, S., et al. (2012, submitted). Conversations with Women: Using the Principles of Social Marketing to Explore Intervention Development in FASD Prevention.

Rowbottom, L., Merali, N., & Pei, J. (2010). Interventions for non-biological caregivers of children with Fetal Alcohol Spectrum Disorders. Developmental Disabilities Bulletin, 38(1&2), 35-54.

Shepard, B., & O’Neil, L. K. (2012). Intervention of Hope: Sustaining Caregivers of Children with FASD through Therapeutic Psychoeducational Camps. Canadian Journal of Family and Youth, 4(1), 79-108.

Sylvain, N. J., Brewster, D. L., & Ali, D. W. (2010). Zebrafish embryos exposed to alcohol undergo abnormal development of motor neurons and muscle fibers. Neurotoxicology and Teratology, 32(4), 472-480. doi:10.1016/j.ntt.2010.03.001

Sylvain, N. J., Brewster, D. L., & Ali, D. W. (2011). Embryonic ethanol exposure alters synaptic properties at zebrafish neuromuscular junctions. Neurotoxicology and Teratology, 33(2), 313-321. doi:10.1016/j.ntt.2010.12.001

Tough, S. C., Clarke, M., & Clarren, S. (2005a). Preventing fetal alcohol spectrum disorders. preconception counseling and diagnosis help. Canadian Family, 51, 1199-1201.

Tough, S. C., Clarke, M., & Cook, J. (2007). Fetal Alcohol Spectrum Disorder Prevention Approaches Among Canadian Physicians by Proportion of Native/Aboriginal Patients: Practices during the Preconception and Prenatal Periods. Maternal and Child Health Journal, 11(4), 385-393.

Tough, S. C., Clarke, M., & Hicks, M. (2003). Knowledge and attitudes of Canadian psychiatrists regarding fetal alcohol spectrum disorders. The Canadian Child and Adolescent Psychiatry Review, 12(3), 64-71.

Tough, S. C., Clarke, M., Hicks, M., & Cook, J. (2006a). Preconception Practices among Physicians and Obstetricians- Gynecologists: Results from a National Survey. Journal of Obstetrics and

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Gynaecology, 784-85.Tough, S. C., Clarke, M., Hicks, M., & Clarren, S. (2004). Clinical practice characteristics and

preconception counseling strategies of health care providers who recommend alcohol abstinence during pregnancy. Alcoholism, Clinical and Experimental Research, 28(11), 1724-1731.

Tough, S. C., Clarke, M., Hicks, M., & Clarren, S. (2005b).Attitudes and Approaches of Canadian Providers to Preconception in Counseling and the Prevention of Fetal Alcohol Spectrum Disorders. Journal of Fetal Alcohol Syndrome International, 3, 1-16.

Tough, S. C., Clarke, M., Hicks, M., & Clarren, S. (2005). Variation in health care provider definitions of moderate consumption of alcohol as related to recommendations regarding alcohol consumption during pregnancy: Results from a canadian survey. Therapeutic Drug Monitoring, 27(3), 290-296.

Tough, S, C., Hicks, M., Davey, H., & Clarke, M. (2008a).Knowledge, attitudes and behaviours of midwives towards fetal alcohol spectrum disorders and alcohol use during pregnancy. Canadian Journal of Midwifery Research and Practice, 7(2), 4-17.

Tough, S. C., Ediger, K., Hicks, M., & Clarke, M. (2008b). Rural-urban differences in provider practice related to preconception counselling and fetal alcohol spectrum disorders. Canadian Journal of Rural Medicine, 13(4), 180-188.

Tough, S., Tofflemire, K., Clarke, M., & Newburn-Cook, C. (2006b). Do women change their drinking behaviors while trying to conceive? An opportunity for preconception counseling. Clinical Medicine & Research, 4(2), 97-105.

Wyper, K. R., & Rasmussen, C. R. (2011). Language impairments in children with fetal alcohol spectrum disorders.Journal of Population Therapeutics and Clinical Pharmacology, 18(2), e364-76.

Zhou, D., Lebel, C., Lepage, C., Rasmussen, C., Evans, A., Wyper, K., & Beaulieu, C. (2011). Developmental cortical thinning in fetal alcohol spectrum disorders. NeuroImage, 58(1), 16-25.

doi:10.1016/j.neuroimage.2011.06.026

Peer Reviewed Conference Presentations in the Last 5 Years

Anderson, K. (2009, March). Paws on Purpose: Innovations in Animal Assisted Therapy for FASD Programs. Presented at Third International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Amaral, R., & Leblanc, R. (2010, February). Tsuu T’ina Gathering Together – Working with Men for FASD Prevention. Presented at 2010 Alberta FASD Conference, Calgary, AB.

Andrew, G. (2011, November). International Classification of Function (ICF) Applied to FASD to Inform Assessment and Intervention. Presented at 2011 Alberta FASD Conference, Calgary, AB.

Andrew, G., & Pei, J. (2010, February). FASD: The Dilemma of Diagnosis in the Early Years. Presented at 2010 Alberta FASD Conference, Calgary, AB.

Andrew, G. and Glenrose Team, (2011, March). International Classification of Function (ICF) Applied to FASD to Inform Assessment and Intervention. Presented at Fourth International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Andrew, G., & Shiller, G. (2005, February). Increasing Community Capacity to Diagnose FASD. Presented at 2005 National FASD Conference, Vancouver, BC.

Andrew, G., Shuller, G., & Olasker, K. (2007, March). Tele-health Consultation Model for FASD Assessment and Follow Up by Community-Based Teams. Presented at Second International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Anderson, J., Pazderka, H., & Polzin, W. (2011, November). Sensorimotor Deificts in FASD – Functional Implications, Therapeutic Interventions. Presented at 2011 Alberta FASD Conference, Calgary, AB.

Badry, D. E., & Building Our Home Fires Team Members (2012, April). Building Our Home Fires – A Women’s Health/FASD Prevention Project in the Northwest Territories. Poster presented at the Fifth

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National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Badry, D. E., Pelech, W., & Debolt, D. (2011, November). A Casework Practice Model for Children in Care with FASD: Developing Practice Knowledge for Children with FASD. Presented at 2011 Alberta FASD Conference, Calgary, AB.

Badry, D. E., Pelech, W., & Milne, D. (2011, March) The FASD Community of Practice Research Project in Alberta Children’s Services: A Research and Demonstration Project. Presented at Fourth International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Badry, G., & McRae, TD. (2010, February). Adult Guardian Trusteeship Act (AGTA). Presented at 2010 Alberta FASD Conference, Calgary, AB.

Baugh, L., Denys, K., Hutchison, M., Kully-Martens, K., Tamana, S., & LaFrance, MA. (2011, November). Translating Research Into Practice. Presented at the 2011 Alberta FASD Conference, Calgary, AB.

Baugh, L., Rasmussen, C., Andrew, G., & Pei, J. (2012, July). Intervention Recommendations After Fetal Alcohol Spectrum Disorder Assessment. Presented at 22nd Biennial Meeting International Society for the Study of Behavioural Development, Edmonton, AB.

Bengtsson, K. G., & Himmelreich, M. (2012, April). FASD Action Hall (FAH): Teaching and Promoting Self-Advocacy. Presented at Fifth National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Bever, J., & Heraghty, D. (2011, November). You Can Be Strengthened Through Giving and Receiving Support: Peer Support Groups Parents/Caregivers. Presented at 2011 Alberta FASD Conference, Calgary, AB.

Boulding, D. (2009, February). Fetal Alcohol and Relationship Centered Lawyering. Presented at 2009 Alberta FASD Conference, Edmonton, AB.

Brintnell, S. (2012, April). Adults with FASD: Improving Community Outcomes After Incarceration (3C – Corrections and Connections into the Community). Presented at Fifth National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Brintnell, S. E., Martell, R., & Smallacombe, W. (2009, March). The Mind, Body, Spirit Experience in Reestablishing a Cultural Identity in Female Adult Indigenous Offenders with FASD. Presented at Third International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Brodeaur, K., & Aguillon-Piojo, L. (2012, April). Prenatal Alcohol Exposure: Changes in Face and Growth Over Time. Presented at Fifth National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Brodeur, K., Kasper, R. (2012, April). Prenatal Alcohol Exposure: Changes in Cognitive Performance Over Time. Presented at Fifth National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Bryson, D., Wark, D., Carrier, B., Wilson, C. A., & Jones, S. (2005, February). FASD: A Collaborative Approach to Prevention. Presented at 2005 National FASD Conference, Vancouver, BC.

Burnside, L., McDermott, J., Tanchak, S., Reinink, A., & Gough, P. (2011, November). Learning from Women with High Risk Substance Use: Phase 1 – Characteristics of Women Who Have Completed a Mentoring Program. Presented at 2011 Alberta FASD Conference, Calgary, AB.

Carlson, C. (2010, April). Patterns of Recommendations Made Following FASD Diagnosis: A Pilot Review of Two Alberta FASD Diagnostic Clinics. Poster presented at Fourth National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Cismaru, M., Deshpande, S., Thurmeier, R., Lavack, A., & Agrey, N. (2010). Preventing fetal alcohol spectrum disorder: The role of protection motivation theory, Health Marketing Quarterly, 27, 66-85.

Culshaw, M., Kennedy, T., & Plett, R. (2012, April). Expanding the Role of Occupational Therapy to Support Families and Clients. Presented at Fifth National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

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Deib, J., Hendrickson, S., & Plante, M. (2007, March). Helping Kids Soars: Specialized Programs for Children with FASD. Presented at Second International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Debolt, D., & Badry, D. (2010, April). Building Promising Practice in Child Welfare for Individuals with FASD. Presented at Fourth National Biennial Conference on Adolescents and Adultswith Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Debolt, D., & Wage, M. (2007, March). Lethbridge Community Justice Project – Supporting Individuals with Fetal Alcohol Spectrum Disorder. Presented at Second International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Denys, K. A., Kerns, K. A., Pei, J., Macsween, J., & Rasmussen, C. (2011, March). Executive Functioning Training in Children with FASD. Presented at Fourth International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Denys, K. A., & Rasmussen, C. (2012, July). Quality of Life and Family Stress in Children with Prenatal Alcohol Exposure and Fetal Alcohol Spectrum Disorder. Poster presented at 22nd Biennial Meeting International Society for the Study of Behavioural Development, Edmonton, AB.

Deshphande, S., Basil, M., Basford, L, et al., (2005). Promoting abstinence among women: potential social change strategies. Health Marketing Strategy, 23 (2), 45-67.

Edey., W. (2011, November). Hope and Strengths Tool for Adults with FASD. Presented at 2011 Alberta FASD Conference, Calgary, AB.

Elliot, L., & Russell, M. (2011, November). FASD Lifespan Program: A Lifelong Approach to Working with Individuals with FASD. Presented at 2011 Alberta FASD Conference, Calgary, AB.

Elliot, L., & Gurr, J. (2010, April). FASD Across the Lifespan….One Community’s Answer to the Need for a Continuum of Care. Presented at Fourth National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Gibbard, B. W., Prince, P., & Wormsbecker, T. (2009, February). Introducing the Canada Northwest FASD Intervention Network Action Team. Presented at 2009 Alberta FASD Conference, Edmonton, AB.

Goodfellow, C., & Yuzwenko, P. (2009, March). Youth with FASD and the Youth Criminal Justice System in Canada. Presented at Third International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Goodfellow, C. L., & Yuzwenko, P. (2008, May). FASD Affected Children and the Youth Criminal Justice System. Presented at 2008 International Conference on FASD (CanFASD Northwest Partnership), Banff, AB.

Gould, K., & Heal, L. (2005, February). Enhanced Services for Women – Building Capacity with other service providers working with pregnant substance using women. Presented at 2005 National FASD Conference, Vancouver, BC.

Hannula, B., & Olsen, L. (2006, April). Supporting Youth and Young Adults. Presented at Second National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Hutchison, M., & Pei, J. (2012, April).Metacognitive Strategies for Adolescents with FASD. Presented at Fifth National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Hutchison, M., Pei, J., Kerns, K. A., Denys, K., & MacSween, J. (2012, April). Metacognitive Strategies for Adolescents with FASD Poster presented at 22nd Biennial Meeting International Society for the

Study of Behavioural Development, Edmonton, AB. Hamilton, M. (2011, Calgary). Compassion Fatigue: What Helpers Need to Know. Presented at 2011

Alberta FASD Conference, Calgary, AB. Harbourne, B., & Urness, C. (2006, April). A Life-span Model of Service Coordination. Presented at the

Second National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

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Ipsiroglu, O. S., Fast, K. D., Garden, J., Lucyshyn, J., & Witmans, M. (2012, April). De-Medicalizing Sleep: Sleep Assessment Tools in the Community Setting. Presented at Fifth National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Iverson, S. (2010, February).How to Start and Sustain a FASD Parent Peer Support Group. Presented at the 2019 Alberta FASD Conference, Calgary, AB.

Job, J., St. Arnault, D., O’Riordan, T., Poth, C., & Pei, J. (2012, June). Using Quilting to Capture Programmatic Experiences: A Practical How-To Guide for Researchers. International Institute for Qualitative Methodology, Edmonton, AB.

Job, J., Pei, J., & Poth, C. (2010, April). Enhancing the Assessment Process and Implications for FASD-Diagnosed Students: Documenting the Perspectives of Classroom Teachers, Allied Professionals, Caregivers, and Administrators. Poster presented at Fourth National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Johnson, C., & Lawryk, L. (2009, February). A Comparison of FASD Diagnostic Strategies in the Evaluation of 650 Alcohol Exposed Children, Youth, and Adults. Presented at 2009 Alberta FASD Conference, Edmonton, AB.

Jonsson, E. (2011, March). Economic Implications of FASD. Presented at the Fourth International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Kully-Martens, K., Wyper, K., Andrew, G., Zwaigenbaum, L., Tough, S., & Rasmussen, C. (2012, July). Service Utilization Patterns Among Children and Adolescents with Fetal Alcohol Spectrum Disorders (FASD). Presented at 22nd Biennial Meeting International Society for the Study of Behavioural Development, Edmonton, AB.

Lawryk, L. (2010, February). Considerations in Screening Maternal Alcohol Use. Presented at 2010 Alberta FASD Conference, Calgary, AB.

Lawryk., L. (2009, February). The Knee Bone Connected to the Thigh Bone. Presented at 2009 Alberta FASD Conference, Edmonton, AB.

Lorenz, B., & Hacker, S. (2011, November). FASD Youth Justice Program. Presented at 2011 Alberta FASD Conference, Calgary, AB.

Mallon, B. (2012, April). Assessment and Diagnostic Model for Adults with Suspected FASD. Poster presented at the Fifth National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Massey, D. S., Both, J., & Densmore, R. J. (2011, March). FASD and Co-Morbid Conditions: Moving Beyond the Single Factor Diagnosis. Presented at the Fourth International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Massey, D., Massey, V., & Pei, J. (2009, March). Neurocognitive Performance of Individuals with FASD Across the Lifespan: Executive Functions, Memory, & Learning. Presented at the Third International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Matejko, A., Lebel, C., Rasmussen, C., & Beaulieu, C. (2010, February). Brain Imaging and Neurocognitive Function in Children and Twins with FASD. Presented at 2010 Alberta FASD Conference, Calgary, AB.

McFarlane, A., Rajani, H., Nelson, M., & Symes, B. (2012, April). Ten Years of FASD Diagnosis and Assessment: What have We Learned. Presented at Fifth National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

McFarlane, A., Fries, D., Ring, J., & Sanregret, A., (2010, April). 10 Years of Diagnosis and Support: Outcomes of the Lakeland Centre for FASD Community Model. Presented at Fourth National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

McFarlane, A., Schneider, N., & Wilberg. N. (2005, February). Developing Diagnostic Teams & Community Capacity with Partnerships. . Presented at the 2005 National FASD Conference, Vancouver, BC.

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McFarlane, A., & Zinc, H. (2006, April). Life After Diagnosis: A Holistic Approach to Supporting Adults with FASD. Presented at the Second National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

McFarlane, H., & McFarlane, A. (2008, May). Simon Says. Presented at 2008 International Conference on FASD (CanFASD Northwest Partnership), Banff, AB.

McFarlane, T., Myers, V., & Yvonne, M. (2008, May). Art Mentorship Project. Presented at 2008 International Conference on FASD (CanFASD Northwest Partnership), Banff, AB.

McGregor, D. (2008, April). Life Experiences of Young Adults with FASD. Presented at Third National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

McGregor, D. (2008, May). Life Experiences of Young Adults with FASD. Presented at 2008 International Conference on FASD (CanFASD Northwest Partnership), Banff, AB.

McGregor, D., & Himmelreich, M. (2006, April). Kaleidoscope: An Employment Readiness Program for Youth with FASD. Presented at the Second National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

McLennan, J. D., & Huculak, S. (2009, February). Service Use Patterns and Experiences of Families with Children with FASD in Alberta. Presented at 2009 Alberta FASD Conference, Edmonton, AB.

McLennan, J. D., Urichuk, L., & Doig, J. (2009, February). Evaluation of Respite Service for Families with Children with FASD in Alberta. Presented at 2009 Alberta FASD Conference, Edmonton, AB.

Minard, S., & Whitford, C., & Oleszewska, A. (2010, April).A Multi-Disciplinary Approach to Working with Students Affected by FASD. Presented at Fourth National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Milne, D., & Penner, J. (2009, February). FASD Cross-Sector Collaboration. Presented at 2009 Alberta FASD Conference, Edmonton, AB.

Milne, D., Stoddard, S., & Badry, D. (2009, February).Communities of Practice and FASD. Presented at 2009 Alberta FASD Conference, Edmonton, AB.

Moncayo, G. (2009, February). Collaborative Care Model at Calgary Urban Project Society. Presented at 2009 Alberta FASD Conference, Edmonton, AB.

Nelson, J., & ADDAC (2007, March). Collaborating to Enhance FASD Prevention in Addictions Treatment. Presented at the Second International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Nelson B., Taylor, H., Rogozinsky, L., & Wark, D. (2006, April). Well Communities and Well Families: Finding Solutions to Fetal Alcohol Syndrome. Presented at Second National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

O’Riordan, T. L., & Wyper, K. R. (2012, April). Creating a Collaboration Between Justice, Community, Clinical Practice, and Research in FASD. Presented at Fifth National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Ormstrup, O. (2011, November). Straight from the Horses Mouth: Engaging Communities in FASD Awareness. Presented at 2011 Alberta FASD Conference, Calgary, AB.

Ormstrup, D. (2010, February). Social Skill Stoppers. Presented at 2010 Alberta FASD Conference, Calgary, AB.

Ormstrup, D. (2009, February). Remind Me Again Why This is So Difficult. Presented at 2009 Alberta FASD Conference, Edmonton, AB.

Ormstrup, D., & Paintner, A. N. (2011, March). A Rural Response to a Global Issue. Poster presented at the Fourth International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Ormstrup, D., Van Vugt, P., & Johansson, A. (2010, April). Clarity in the Midst of Chaos and Confusion. Presented at Fourth National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

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Palashniuk, E. (2009, March). Calgary Fetal Alcohol Network; Building Community Capacity. Presented at Third International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Patterson-Deib, J., & Myles, H. (2010, April).The Adult FASD Evolution Program. Presented at Fourth National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Pei, J., Kully-Martens, K. V., & Rasmussen, C. R. (2011, March). Source Monitoring in Children with FASD. Presented at the Fourth International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Pei, J., & Poth, C. (2009, February). Effective Strategies for Bridging the Communication Gap in Service Delivery for FASD Individuals. Presented at the 2009 Alberta FASD Conference, Edmonton, AB.

Pei, J., Poth, C., & Hayes, S. (2012, October). Toward enhanced teacher preparation for meeting the needs of students with FASD: A comparison of two professional learning approaches in Alberta, Canada. Presented at the 2nd European Conference on FASD, Barcelona, Spain.

Pei, J., Poth, C., & Job, J. (2010, February). Enhancing the Assessment Process and Implications for FASD-Diagnosed Students: Perspectives of Classroom Teachers and Caregivers. Presented at 2010 Alberta FASD Conference, Calgary, AB.

Pei, J., & Walls, L. (2010, April). Interventions in FASD: Innovation and Opportunity through Effective Collaboration. Presented at Fourth National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Pereira, R. (2010, April). Burden Experienced by Caregivers of Youth with Fetal Alcohol Spectrum Disorder. Poster presented at Fourth National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Pereira, R. (2010, February). Oppression, Stigma and Power: Burden Experienced by Caregivers of Youth with FASD. Presented at 2010 Alberta FASD Conference, Calgary, AB.

Phillips, C. (2011, November). Mindfulness Meditation – For Self-Care and Patient/Client Care. Presented at 2011 Alberta FASD Conference, Calgary, AB.

Piquette-Tomei, N. (2007, March). Adolescent Risk-Taking Behaviours – Links to FASD. Poster presented at Second International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Piquette-Tomei, N., Droessler, J., Thorpe, K., Basford, L., Williams, R., Deshpande, S., Bureau A. (2005, February). State of the evidence review: FASD prevention. FASD National Conference, Vancouver, B.C.

Polzin, W. (2010, February). Attachment and FASD: Understanding and Nurturing a Relationship. Presented at 2010 Alberta FASD Conference, Calgary, AB.

Poth, C., Henneveld, D., & Rasmussen, C. (2010, April). Building Collaborative Partnerships: Addressing the Need for Research-Informed Programs for Individuals with FASD. Presented at Fourth National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Premji, S. (2009, February). Early Intervention Programs for Alberta’s Children with FASD: Characteristics of Service Delivery. Presented at 2009 Alberta FASD Conference, Edmonton, AB.

Premji, S. S., Benzies, K., Serrett, K., & Hayden, K. A. (2005, February). State-of-the-Evidence Review: Interventions and Strategies for Children and Youth affected by FASD. Presented at 2005 National FASD Conference, Vancouver, BC.

Rasmussen, C. (2012b, July). Research on Interventions for Fetal Alcohol Spectrum Disorders. Presented at 22nd Biennial Meeting International Society for the Study of Behavioural Development, Edmonton, AB.

Rasmussen, C. (2012,c July). Neurobehavioral Development and Quality of Life in Fetal Alcohol Spectrum Disorder. Poster workshop presented at 22nd Biennial Meeting International Society for the Study of Behavioural Development, Edmonton, AB.

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Rasmussen, C. (2007, March). Parental Ratings of Children with Fetal Alcohol Spectrum Disorder on the Behaviour Rating Inventory of Executive Function (BRIEF). Poster presented at the Second International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Rasmussen, C. (2009, March). Evaluating the Diagnosis of Fetal Alcohol Spectrum Disorders (FASDs). Poster presented at the Third International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Rasmussen, C., Heneveld, D., Badry, D., & Denys, K. (2009, March). The Effectiveness of FASD Programs and Outcomes for At-Risk Mothers, Families, and Parents with FASD. Presented at Third International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Rasmussen, C., Henneveld, D., Badry, D., & Denys, K. (2009, February). The Effectiveness of FASD Programs on Outcomes for At-Risk Mothers, Families, and Parents with FASD. Presented at 2009 Alberta FASD Conference, Edmonton, AB.

Rasmussen, C., Lestideau, O., & Mrazik, M. (2008, May). Brain Imaging and Executive Functioning in Children with Fetal Alcohol Spectrum Disorder. Presented at 2008 International Conference on FASD (CanFASD Northwest Partnership), Banff, AB.

Rasmussen, C., Pei, J., & Abele-Webster, L. (2009, February). Research on the Diagnosis of Fetal Alcohol Spectrum Disorder. Presented at 2009 Alberta FASD Conference, Edmonton, AB.

Rebus, C. (2009, February).Strategies for Language Competency for Children and Adolescents with FASD. Presented at 2009 Alberta FASD Conference, Edmonton, AB.

Rundle-Thiele, S., & Deshpande, S. (2012, June).Not drinking is the safest option” Communication strategies targeting FASD. Presented at International Social Marketing Conference, Brisbane, Australia.

Salmon, A., & Badry, D. (2008, May). Preventing FASD: Collaborating on a Health Determinants Approach. Presented at 2008 International Conference on FASD (CanFASD Northwest Partnership), Banff, AB.

Sanders, J. (2009, February). It was a Long Journey: Biological and non-biological Parents Experiences Raising Children with FASD. Presented at 2009 Alberta FASD Conference, Edmonton, AB.

Scott-Donaldson, C., Davis, D., Elliot, L., Williamson, S., & Leblanc, R. (2010, February).A Day in the Life of a Mentor. Presented at 2010 Alberta FASD Conference, Calgary, AB.

Smallacombe, W., Martell, R., & Brintnell, S. (2009, February). Corrections to Community Transitional Program.Presented at 2009 Alberta FASD Conference, Edmonton, AB.

Soenen, D., Dubik, M., & Joslin, D. (2007, March). Canada Northwest FASD Partnership: An Alliance of Governments, Working Together to Address FASD. Presented at Second International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Stegmeier, S., Ormstrup, D., Small, O. (2009, February).From Lemons to Lemonade. Presented at 2009 Alberta FASD Conference, Edmonton, AB.

Swaffield, S., & McClure, C. (2011, November). The Wellness Resiliency and Partnership (WRaP) Project Supporting Success for Junior and Senior High School Students with FASD. Presented at 2011 Alberta FASD Conference, Calgary, AB.

Tamana, S., Baugh, L., Andrew, G., Tough, S., Zwaigenbaum, L., & Rasmussen, C. Neuropsychological Impairments on the NEPSY-II Among Children with FASD. Poster presented at 22nd Biennial Meeting International Society for the Study of Behavioural Development, Edmonton, AB.

Tamana, S., Pei, J., Massey, D., Massey, V., & Rasmussen, C. (2012, April).Profile of Neuropsychological Deficits in Adolescents with FASD. Presented at Fifth National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Thurmeiser, R., Deshpande, S., & Cismaru, M. (2009, March). Developing Primary Prevention Strategies: Conversations with Women. Poster presented at the Third International Conference on Fetal

Alcohol Spectrum Disorder, Vancouver, BC.

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Tough, S. (2009, March). Dispelling Myths and Developing a Framework for Reducing the Risk of Alcohol-Exposed Pregnancies. Presented at Third International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Treit, S., Lebel, C., Baugh, L., Andrew, G., Beaulieu, C., & Rasmussen, C. (2012, July).Longitudinal White Matter Development in Fetal Alcohol Spectrum Disorder. Poster Presented at 22nd Biennial Meeting International Society for the Study of Behavioural Development, Edmonton, AB.

Treit, S. Rasmussen, S., & Beaulieu, C. (2011, March). Diffusion Tensor Imaging of Children, Adolescents, and Adults with FASD. Presented at Fourth International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Tucker, M., & Murphy, J. H. (2011, November).Transition Planning for Youth into Adulthood. Presented at the 2011 Alberta FASD Conference, Calgary, AB.

van Vugt., P. (2010, February). FASD and Sexuality. Presented at 2010 Alberta FASD Conference, Calgary, AB.

van Vugt, P., & Cobb, H. (2011, November). Sexuality: A Tool of Power or Control? Presented at 2011 Alberta FASD Conference, Calgary, AB.

van Vugt, P., & Crowley, T. (2011, November). Wisdoms from the Trenches. Presented at 2011 Alberta FASD Conference, Calgary, AB.

van Vugt, P., Johansson, A., & Knowlton, B. (2009, February). Clarity in the midst of chaos. Presented at 2009 Alberta FASD Conference, Edmonton, AB.

Wage, M., Boulding, D., Wiberg, N. (2008, May). Fetal Alcohol Spectrum Disorder and the Justice System. Presented at 2008 International Conference on FASD (CanFASD Northwest Partnership), Banff, AB.

Wage, M., & Debolt, D. (2008, April). Lethbridge Community Justice Project – A Partnership for the Awareness, Education, and Management of FASD. Presented at Third National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Walls, L. J., Rasmussen, C., Pei, J., & Henneveld, D. (2011, March). The McDaniel Youth Intervention Program and Collaborative Research Project: Interim Findings from an Innovative Research Project. Presented at Fourth International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Walker, C., & Pearce, M. (2008, May). What’s Worth Fighting For: How to Advocate Effectively for School Success. Presented at 2008 International Conference on FASD (CanFASD Northwest Partnership), Banff, AB.

Wilson., D. (2011, November). Overview of Alcohol Use and Pregnancy Clinical Guidelines. Presented at 2011 Alberta FASD Conference, Calgary, AB.

Wotherspoon, E., & Serrett, K. (2009, March). FASD and Neglect in Infancy: The Therapeutic Impact of Relationships. Presented at Third International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Yuzwenko, P. G., & Lane-Goodfellow, (2010, April). Children and Youth with FASD and the Criminal Justice System. Presented at Fourth National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder, Vancouver, BC.

Yuzwenko, P. G., & Stroppel, R. (2010, February). Children with FASD and the Youth Justice System. Presented at 2010 Alberta FASD Conference, Calgary, AB.

Published Books and Chapters

Andrew, G. (2010). Diagnosis of FASD: An Overview. In Riley, E. P., Clarren, S., Weinberg, J., & Jonsson, E. (Eds.) (2010). Fetal Alcohol Spectrum Disorder FASD: Management and Policy Perspectives of FASD. Weinheim, Germany: Wiley–VCH. Institute of Health Economics

Brintnell, S., Bailey, P. G., Sawhney, A., & Kreftin, L. (2010). Understanding FASD: Disability and Social Supports for Adult Offenders. In Riley, E. P., Clarren, S., Weinberg, J., & Jonsson, E. (Eds.) (2010). Fetal

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Alcohol Spectrum Disorder FASD: Management and Policy Perspectives of FASD. Weinheim, Germany: Wiley–VCH. Institute of Health Economics

Clarren, S., Salmon, A., & Jonsson, E. (Eds.). (2011). Prevention of Fetal Alcohol Spectrum Disorder FASD: Who is responsible? Weinheim, Germany: Wiley–VCH. Institute of Health Economics

Kully-Martens, K., Wyper, K., & Rasmussen, C. (2011). Research on Interventions to Prevent Alcohol Consumption During Pregnancy. In Hoffman, J. (Eds.), Pregnancy and Alcohol Consumption (pp. 155-173). New York: Nova Science Publishers.

Lebel, C., Rasmussen, C., & Beaulieu, C. (2011). Diffusion Tensor Imaging of the Brain in Fetal Alcohol Spectrum Disorder.In Preedy, V. R. (Eds.) International Handbook of Behavior, Diet and Nutrition (pp. 2897-2913). Springer.

McFarlane, A. (2010). Shifting Responsibility from the Individual to the Community. In Riley, E. P., Clarren, S., Weinberg, J., & Jonsson, E. (Eds.) (2010). Fetal Alcohol Spectrum Disorder FASD: Management and Policy Perspectives of FASD. Weinheim, Germany: Wiley–VCH. Institute of Health Economics

McLennan, J. D. Critical Consideration for Intervention Planning for Children with FASD. In Riley, E. P., Clarren, S., Weinberg, J., & Jonsson, E. (Eds.) (2010). Fetal Alcohol Spectrum Disorder FASD: Management and Policy Perspectives of FASD. Weinheim, Germany: Wiley–VCH. Institute of Health Economics

Milne, D., Moorhouse, T., Shikaze, K., & Cross Ministry Members (2010). A Cross Ministry Approach to FASD Across the Lifespan in Alberta. In Riley, E. P., Clarren, S., Weinberg, J., & Jonsson, E. (Eds.) (2010). Fetal Alcohol Spectrum Disorder FASD: Management and Policy Perspectives of FASD. Weinheim, Germany: Wiley–VCH. Institute of Health Economics

Rasmussen, C., Treit, S., & Pei, J. (2010).Memory Interventions of Children with Memory Deficits.International Encyclopedia of Rehabilitation. Retrieved July 20, 2012 from Buffalo: Center for International Rehabilitation Research Information and Exchange (CIRRIE). http://cirrie.buffalo.edu/encyclopedia/en/article/276/

Robin, T., Deshpande, S., Lavack, A., Agrey, N., & Cismaru, M. (2010). Next steps in FASD primary prevention. In Riley, E. P. Clarren, C., Weinberg, J., & Jonsson, E. (eds.), Fetal Alcohol Syndrome Disorders: A Health Policy Perspective, (pp. 175-191). Wiley-VCH Verlag, Weinhei.

Thanh, N. X., Jonsson, E., Dennett, L., & Jacobs, P. (2011). Costs of FASD. In Riley, E. P., Clarren, S., Weinberg, J., & Jonsson, E. (Eds.) (2010). Fetal Alcohol Spectrum Disorder FASD: Management and Policy Perspectives of FASD. Weinheim, Germany: Wiley–VCH. Institute of Health Economics

Thurmeier, R., Deshpande, S., Lavack, A., Agrey, N., & Cismaru, M. (2010).Next Steps in FASD Primary Prevention. In Riley, E. P., Clarren, S., Weinberg, J., & Jonsson, E. (Eds.) (2010). Fetal Alcohol Spectrum Disorder FASD: Management and Policy Perspectives of FASD. Weinheim, Germany: Wiley–VCH. Institute of Health Economics

Tough, S., & Jack, M. (2010). Frequency of FASD in Canada and What This Means for Prevention Efforts. In Riley, E. P., Clarren, S., Weinberg, J., & Jonsson, E. (Eds.) (2010). Fetal Alcohol Spectrum Disorder FASD: Management and Policy Perspectives of FASD. Weinheim, Germany: Wiley–VCH. Institute of Health Economics

Wyper, K., & Rasmussen, C. (2008). Cognitive Deficits in Individuals Prenatally Exposed to Alcohol. In Sher, L. (Eds.) Research on the Neurobiology of Alcohol Use Disorders (pp. 277-289). New York: Nova Science Publishers.

Non-Referred Conference Presentations

Andrew, G. (2009, October). Overview of FASD. Presented at IHE Consensus Conference on FASD – Across the Lifespan, Edmonton, AB. Retrieved July 20, 2012 from http://www.ihe.ca/documents/001-

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Andrew.pdfBadry, D. (2009, October). Policy Development in FASD. Presented at IHE Consensus Conference on

FASD - Across the Lifespan, Edmonton, AB. Retrieved July 20, 2012 from http://www.ihe.ca/documents/027-Badry.pdf

Badry, D., Pelech, W., Milne, D., & Daoust, G. (2010, November).Fetal Alcohol Spectrum Disorder (FASD) Community of Practice. Presented at FASD Community of Practice Symposium (Alberta Centre for Child, Family, and Community Research), Calgary, AB. Retrieved July 20, 2012 from http://www.research4children.com/public/data/documents/BadryandPelech10451145pdf.pdf

Basford, L., & Premji, S. (2004, October). State of Evidence Reviews in FASD Prevention and Intervention Strategies. Presented at Fetal Alcohol Spectrum Disorder Symposium Alberta Centre for Child, Family, and Community Research), Calgary, AB.

Baydala, L. (2009, October). Pre-conception Initiatives. Presented at IHE Consensus Conference on FASD – Across the Lifespan, Edmonton, AB.

Bergman, J. (2009, October). Fetal Alcohol Syndrome and Primary Care. Presented at IHE Consensus Conference on FASD – Across the Lifepan, Edmonton, AB. Retrieved July 20, 2012 from http://www.ihe.ca/documents/015-Bergman.pdf

Brintnell, S. (2009, October).Social Service Needs of Adults with FASD in the Correctional System. Presented at IHE Consensus Conference on FASD – Across the Lifespan, Edmonton, AB. Retrieved July 20, 2012 from http://www.ihe.ca/documents/024-Brintnell.pdf

Gibbard, B. (2009, October). Extent and Impact on Child Development. Presented at IHE Consensus Conference on FASD – Across the Lifspan, Edmonton, AB. Retrieved July 20, 2012 from http://www.ihe.ca/documents/004-Gibbard.pdf\

Jacobs, P. (2009, October. FASD Economic Implications for Individuals and Families. Presented at IHE Consensus Conference on FASD – Across the Lifespan, Edmonton, AB. Retrieved July 20, 2012 from

http://www.ihe.ca/documents/008-Jacobs.pdfMcFarlane, A. (2009, October). Shifting Responsibility from Individual to Community. Presented at IHE

Consensus Conference on FASD - Across the Lifespan, Edmonton, AB. Retrieved July 20, 2012 from http://www.ihe.ca/documents/020-McFarlane.pdf

Tough, S. (2009, October).Incidence and Prevalence of FASD in Alberta and Canada. Presented at IHE Consensus Conference on FASD – Across the Lifespan, Edmonton, AB. Retrieved July 20, 2012 from http://www.ihe.ca/documents/002-Tough.pdf

Published Provincial Agency Reports

Alberta Alcohol and Drug Abuse Commission (ADDAC, 2008). Preventing FASD and FAS: Working with pregnant women who use substances. Women and Substance Use Information Series, Alberta Health Services.

Alberta Alcohol and Drug Abuse Commission (ADDAC, 2004). Estimating the rate of FASD and FAS in Canada. Women and Substance Use Information Series, Alberta Health Services.

Alberta Gambling and Liquor Commission (AGLC, 2007). Developing an Alberta Alcohol Strategy. Retrieved July 20, 2012 from http://aglc.ca/pdf/social_responsibility/Alberta_Alcohol_Strategy.pdf

Badry, D., & Bradshaw, C. (2011). Assessment and Diagnosis of FASD Among Adults: A National and International Systemic Review. Public Health Agency of Canada. Retrieved July 20, 2012 from http://www.phac-aspc.gc.ca/hp-ps/dca-dea/prog-ini/fasd-etcaf/publications/ad-ed/pdf/fasd-etcaf-eng.pdf

Badry, D., & Pelech, W. (2011). Fetal Alcohol Spectrum Disorder Promising Practices for Children in the Care of Alberta Children and Youth Services. Alberta Centre for Child, Family, and Community

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Research. Retrieved July 20, 2012 from http://www.fasd-cmc.alberta.ca/uploads/1206/fasdcommunityofpract94434.pdf

Badry, D., & Pelech, W. (2005). Fetal Alcohol Spectrum Disorder Practice Standards Evaluation Project.Alberta Centre for Child, Family, and Community Research. Retrieved July 20, 2012 from http://www.research4children.com/public/data/documents/FetalAlcoholSpectrumDisorderPracticeStandardsEvaluationProjectpdf.pdf

Basford, L., Thorpe, K., Williams, R. J., Driessker, J., Deshpande, S., Bureau, A., Piquette-Tomei, N., & Cardwell, K. The State of the Evidence: Fetal Alcohol Spectrum Disorder (FASD) Prevention: Final Report. Retrieved July 20, 2012 from https://www.uleth.ca/dspace/handle/10133/421

Clarke, M., Tough, S., & Jack, M. (2004). A National Survey Regarding Knowledge and Attitudes of Health Professionals About Fetal Alcohol Syndrome. Supplementary Results. Health Canada. Retrieved July 20, 2012 from http://www.phac-aspc.gc.ca/publicat/fasd-surv-etcaf-enquete/

Hicks ,M., & Tough, S. (2006). Alcohol and Drug Screening of Meconium: The Association Between Maternal Self-Reported Alcohol and Drug Use and Biological Markers in Meconium. Submitted to the Ministry of Children’s Services, Government of Alberta: Edmonton, AB.

Hicks, M., & Tough, S. (2009). Prenatal Alcohol Exposure and Child Development at 2 Years of Age. Alberta Centre for Child, Family, and Community Research Retrieved July 20, 2012 from Database: The Centre Research Grants, Contracts, and Articles.

Hicks, M., Tough, S., Premji, S., Benzies, K., Clarke, M., Sauve, R. (2004). The Conditions Under Which Women Would Consent to Alcohol and Drug Testing of Their Infants: A Cross-Sectional Survey of Women Giving Birth in a Canadian Urban Centre: A Report Prepared for the Ministry of Alberta Children’s Services. University of Calgary, Calgary, AB.

Huculak, S., & McLennan, J. D. (2009). Service use and needs of families with children seen through FASD speciality clinics in Alberta. Alberta Centre for Child, Family, and Community Research Retrieved July 20, 2012 from http://www.research4children.com/public/data/documents/ServiceUseandNeedsofFamilieswithChildrenseenthroughFASDSpecialtyClinicsinAlbertapdf.pdf

Institute of Health Economics (2009). Consensus Statement on Fetal Alcohol Spectrum Disorder (FASD) – Across a Lifespan, Institute of Health Economics Consensus Statements Volume 4. Retrieved July 20, 2012 from http://www.ihe.ca/documents/FinalWeb_FASDStatement.pdf

McDonald.,& Oidshaw, J. (2007). Assessment of Cognitive Processing in Children and Adolescents with FASD: A Promising Alternative to Traditional IQ tests. Alberta Centre for Child, Family, and Community Research Retrieved July 20, 2012 from Database: The Centre Research Grants, Contracts, and Articles.

Population Research Laboratory (PRL) (2009).Fetal Alcohol Spectrum Disorder Awareness Campaign Project.Alberta Centre for Child, Family, and Community Research. Retrieved July 20, 2012 from http://www.fasd-cmc.alberta.ca/uploads/1004/docfasdawarenesscamp71044.pdf

Pei, J., Poth, C., Job, J., Pasula, B., Brandell, D., & Macnab, J. (2010). Towards Successful Outcomes for Students with Fetal Alcohol Spectrum Disorder (FASD) Through Collaboration.Alberta Centre for Child, Family, and Community Research. Retrieved July 20, 2012 from http://www.research4children.com/public/data/documents/FinalReportDevelopingacollaborativeinterventionforchildrenwithFetalAlcoholSpectrumDisorderspdf.pdf

Premji, S., & Hayden, K. A. (2008). Early Intervention Programs for Alberta Children with a Fetal Alcohol Spectrum Disorder Diagnosis: Characteristics of Service Delivery. Alberta Centre for Child, Family, and Community Research. Retrieved July 20, 2012 from http://www.research4children.com/public/data/documents/EarlyInterventionProgramsforAlbertaExecutiveSummaryFeb2009pdf.pdf

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Rasmussen, C. (2005). Executive Functioning Deficits in FASD.Alberta Centre for Child, Family, and Community Research. Retrieved July 20, 2012 from http://www.research4children.com/public/data/documents/ExecutiveFunctioningExecSummarypdf.pdf

Rasmussen, C., Henneveld, D., Badry, D., Andrew, A., Denys, S., Kully-Martens, K., Leeners, L., Grant, T., & Wyper, K. (2009). The Effectiveness of FASD Programs on Outcomes of At-Risk Mothers, Families, and Parents with FASD.Alberta Centre for Child, Family, and Community Research. Retrieved July 20, 2012 from http://www.research4children.com/admin/contentx/dpDocuments/launch.cfm?ItemId=5708

Ongoing Studies *no submitted presentation(s) or submitted publication(s)

Beaulieu, C., & Rasmussen, C. (ongoing). Tracking Longitudinal White Matter Changes in Fetal Alcohol Spectrum Disorder.

Longitudinal Diffusion Tensor Imaging (DTI) study

Despande, S., Lavack, A., Cismaru, M., & Agrey, N. (2011-2012). Using Social Marketing to Prevent Fetal Alcohol Spectrum Disorders. Canada Northwest FASD Partnership -Evaluating FASD-Specific Public Health and Education Materials.

Conducting individual interviews with women from across western Canada, coding FASD prevention materials, and assessing effectiveness of FASD prevention messages.

Jonsson, E., Thanh, N., Moffatt, J., Ospina, M., Chuck, A., Jacobs, P., Waye, A., & Haas, D. (Commenced October, 2011).Assessment of Successful Approaches to Prevention of FASD.Listed in Institute of Health Economics Project List, May, 2012.

Conducting 5 studies to be completed between Oct 2011-Oct 2013. 1) Identify and evaluate approaches to prevention of FASD, 2) critical review of incidence and prevalence of FASD in AB, 3) Determine utilization of health and other services in AB, 4) Economic model for successful prevention approaches, 5) provide cost-benefit analyses based on the 4 projects.

Jacobs, P., Chuck, A., Moffatt, J., Thanh, N., & Jonsson, E. (Commenced, 2012). Modelling of the Economic Implications of Secondary Disabilities in people with FASD. Listed in Institute of Health Economics Project List, (May, 2012)

Undertaken by IHE team, Department of Human Services AB as part of evaluation of the work of the Cross Ministry Committee on FASD

Jonsson, E., Moffatt, J., Buick, S., Schindel, K., & Haas, D. Prevention of FASD and Legal Issues in FASD. Listed in Institute of Health Economics Project List, (May, 2012)

IHE Steering Committee Initiative on FASD to hold two Consensus Meetings in September of 2013.

Milne, D., Rivard, D., Schatia, D., Fuchs, D. M., Pelech, W., Badry, D., & Goodman, D., & Tri-Jurisdictional Committee Members. (2012). Tri-province Proposal Submission to Public Health Agency of Canada: FASD Initiative.

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Interprovincial initiative that involves Ontario, Manitoba, and Alberta Children Youth and Family Services and three universities (Calgary, Faculty of Social Work: FSW; Toronto, FSW; and Manitoba, FSW).

Phase 1, identify resource utilization and prevalence feasibility (resources in health and education sector); Phase 2, implement prevalence and cost assessment; and Phase 3, integrate findings into planning and policy.

Rasmussen, C., Pei, J., et al., (2011-2012). Mathematics Intervention for children with Fetal Alcohol Spectrum Disorders. The Centre Research Grants, Contracts, & Articles.

Conducting a replication and extension of the Mile program (Kable, Coles, & Taddeo, 2007) on a sample of children in Alberta with FASD.

Reynolds, J.N., Weinberg, J., Clarren, S., Beaulieu, C., Rasmussen, C., Kobor, M., Dube, M.P., & Goldowitz, D. (2011). Fetal Alcohol Spectrum Disorders: Gene-environment interactions, predictive biomarkers, and the relationship between structural alterations in the brain and functional outcomes.

Dr. Reynolds (PI) for Multisite NeuroDevNet Trans-Canadian FASD Demonstration Study.

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Outcome 6:Basic and applied research findings, including those from monitoring and evaluation systems, are used to inform FASD strategic planning, FASD prevention activities, and FASD related programming.

Evaluation Question 6e:Are their indications that evidence is changing/influencing FASD policies and practice?

Prepared By:Cheryl PothJacqueline PeiACCERT Evaluation Team Members:David St. Arnault, Jenelle Job, Ellis Chan, Wence Leung, Sukhpreet Tamana, Kendra McCallum, Laura Gould, Virginia Tze, Katy Wyper, and Erin Atkinson.

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Executive Summary

Basic and applied research findings, including those from monitoring and evaluation systems, are used to inform FASD strategic planning, FASD prevention activities, and FASD related programming.

Evaluation Question

6e: Are their indications that evidence is changing/influencing FASD policies and practice?

Data Sources:

Major source(s): Focus groups with PCAP members, FASD-CMC members, and FASD Service Network members and interviews with FASD clinic members

Findings:1. Both the FASD-CMC and PCAP have utilized research and evaluation results in planning and

decision making.2. Research and evaluation findings are used by FASD Service Networks to guide program funding

decisions which directly impacts policies and practice. 3. Communicating through video conferencing and conferences have been seen by FASD service

providers as useful tools to access and disseminate research.4. Training opportunities via webinars, local PCAP training, conferences, and online databases have

been reported as tools that service providers use to improve their practice.

Recommendations:1. Structural changes in the FASD-CMC and the Service Networks have reduced the priority of FASD

awareness; thus, advocacy and FASD awareness needs to be acknowledged by the FASD-CMC as a regular and consistent priority.

2. PCAP members noted that their program is an evidence-based training program, but they have limited opportunities to access and attend training due to time and funding restraints; thus, a way forward may be to provide funding for PCAP members to attend one conference every year and continue to strengthen and increase online training opportunities for staff during the year, as PCAP members noted that accessing information online is the most efficient for them.

3. Set up a formal method (e.g., a research and evidence-based listerserv) of distributing and receiving research and best practice information to clinics that is easily accessible for members and does not impede on their current duties.

4. PCAP members noted that there have been increased training opportunities for their program members; however, the research and best practice that PCAP mentors are currently able to access are theoretical in nature and not practical enough for mentors to apply to their practice. Thus, it is recommended that future research should take a more tangible approach and convey a clear pragmatic path to how research is relevant to and can be implemented in PCAP practice.

5. Although research was noted by clinicians and clinic directors as crucial to their practice, they reported a lack of time, resources, and opportunities currently in place to promote an efficient and unobtrusive communication line to both research and best practice dissemination and retrieval; thus, it is recommended that evidence be documented in a manner that is unobtrusive to the current line of work.

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6. In the already established lines of communication between PCAP members and researchers, there needs to be a stronger understanding of what practitioners are looking for in terms of research or best practice, so that future studies can focus on topics that are more relevant to the practice of FASD professionals.

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Table of Contents

Outcome 6:................................................................................................................................................................................341Evaluation Question 6e....................................................................................................................................................... 341

Data sources.............................................................................................................................................................................341Method....................................................................................................................................................................................... 341Findings..................................................................................................................................................................................... 341

Organizational/Structural................................................................................................................................................ 341Methods of Communication.............................................................................................................................................. 344

Conclusions.............................................................................................................................................................................. 346Summary................................................................................................................................................................................... 347Recommendations................................................................................................................................................................ 348Considerations for Year 7 Evaluation...........................................................................................................................348

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Basic and applied research findings, including those from monitoring and evaluation systems, are used to inform FASD strategic planning, FASD prevention activities, and FASD related programming.

Research Report: Outcome 6, Evaluation Question 6e

Outcome 6:

Evaluation Question

6e: Are their indications that evidence is changing/influencing FASD policies and practice?

Data sources

Major source(s): Focus groups with PCAP members, FASD-CMC members, and FASD Service Network members and interviews with FASD clinic members

Method

The Alberta Clinical and Community-based Evaluation Research Team (ACCERT) was formed to address Evaluation Questions 2a, 5b, c, and d, and 6 a, b, c, d, and e from Outcomes 2, 5, and 6. It is important to note that the Methods section for this outcome (Outcome 6, Question 6e) can be found in Appendix A of Outcome 2, Question 2a.

Findings

The following findings are divided into two sections: Organizational/Structural and Methods of Communication. The first section describes various FASD associations whose organizations or structures have been influenced or changed because of evidence. This includes how strategic planning such as FASD-CMC funded initiatives and training programs run by PCAP have incorporated research into their development. The second section illustrates the ways various FASD associations have seen changes or influences in communication due to evidence. This includes increased communication between associations interested in FASD research because of FASD-CMC initiated conferences. In each section, first presented are the areas of change or influence which the findings indicate are evidence-based, followed by those changes where the impetus for change or influence is unclear.

Organizational/Structural

Organizational findingsWithin organizational structures, research impacts practice in two ways: 1) Evaluations and researchers have provided a strong foundation off of which FASD-CMC initiatives are based, 2) Research has been used to provide a solid basis for PCAP training. First, our findings suggest that FASD-CMC is using research and evaluation of their programs (such as the Community Justice Project, the FASD video learning series, and the Wellness, Resiliency and Partnerships (WRaP) Coaching Demonstration Project) to inform strategic planning in their initiatives. This point is emphasized by one participant who noted that:

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“I would say the majority of the initiatives funded by FASD-CMC, via the ministries all have an evaluative or research component whether it’s Three Cs, learning series, they’ve all got some way of measuring, has this been successful or not. That informs our ability to, either to continue to go in that direction or not.”

The influence on strategic planning is not limited to evaluation, but includes researcher involvement for informing practice and policy decisions. Specifically, several FASD-CMC focus group participants reported having close working relationships with many researchers from different academic institutions and research networks. FASD-CMC participants remarked that as a result of these relationships, a majority of initiatives funded by FASD-CMC contain either an evaluative or research component that can be used to measure project success and provide guidance for future planning. One participant further described this relationship with research:

“We go to different researchers to help us prepare documents … so those kinds of discussions will go to the academics slash researchers, clinicians, because we need that knowledge to be moved up through our system, we make the arguments of why something should be the way it is from a policy perspective, but we need that expertise.”

Secondly, in regards to PCAP’s use of research and evaluation, our findings indicate that a majority of PCAP participants indicated that evidence has had its greatest impact on their training. PCAP members noted that there was an increase in training opportunities and the use of research through webinars, local PCAP training, conferences, and an online database. Furthermore, most participants acknowledged PCAP’s strong evidence-based foundation, which enhanced mentors’ knowledge and supported their practice. As a PCAP member noted:

“I found it very valuable to take the training myself to get a better understanding of what the frontline workers are being expected to accomplish on the day-to-day basis and again getting back to the strength of the program and understanding where it’s come from and the research that it’s based on, as well as the purposes of it and the mandate and the philosophies behind it and how it all roles together so nicely and understanding why the three years and what the focus of relationships look like. And so we found that to be very beneficial and would like to see that continue as well.”

Structural findingsFinally, there are some significant structural changes that have occurred amongst the FASD clinics running through a multidisciplinary nature, volume of FASD clinic services provided, ability for clinics to incorporate evidence, number of staff and services in PCAP, overall focus in FASD-CMC and FASD Service Networks, and FASD awareness and prominence, but it is unclear how evidence has played a role in these changes. The changes listed as follow are noteworthy to be included for future monitoring purposes:

A strong multi-disciplinary structure developed for clinic teams (noted by clinic members) An increase in services across FASD clinics, where there are more patients seen, and importantly

more adults seen, showing a positive development (noted by clinic members) Clinics have stated a recognition of the importance of utilizing and informing research, but their

busy structure limits the extent to which they are able to do this (noted by clinic members) Substantial program growth including an increasing number of services and staff in Alberta (noted

by PCAP members)

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A shift at the FASD-CMC level from being a decision-making body to a more coordinating body, with the result of having decreased channels of communication to upper levels of government and a change in reporting mechanisms (noted by FASD-CMC members)

A shift in the Alberta FASD Service Networks from being grassroots, community-based organization to more business-oriented funding agencies which has led to challenges with balancing the needs of the community and individuals with FASD served by the Service Networks with the requirements and responsibilities set out by the FASD-CMC

Structural changes have led to a decrease in the prominence and awareness of FASD in several environments. For example, FASD-CMC members noted that the recent structural changes in the provincial government, specifically in the creation of the large Department of Human Services has led to a diminished standing of the issue of FASD. As one participant explained:

“That’s actually an excellent point ‘cause normally under in the old ministry we would’ve been a business priority, we would’ve hit the, one of the priority areas right? Now, we’re competing with [other issues]… [the lead ministry of the FASD-CMC] is so huge now and so now we’re kind of feeling a little bit buried.”

Similarly, our analysis of PCAP focus groups suggests that limited funding was seen as directly hindering FASD awareness in the community (noted by PCAP and FASD-CMC members). Structural limitations in the PCAP program have also led to limited opportunities to receive PCAP training due to mentors’ busy scheduling and insufficient funding allocated to training (noted by PCAP members)

Emerging Understandings: Research and evaluation should be used in planning FASD initiatives and programs so that they

are created with a strong foundation of empirical evidence and best practice; this ensures that clients affected by FASD receive the best care possible.

Evidence Towards Outcomes: FASD-CMC initiatives have been intentional in their efforts to include research and program

evaluation results in decision making and planning activities. PCAP member training is recognized for its solid foundation in research, and research has played a

key role in PCAP training through webinars, local training, conferences, and an online database.

Pressing Issues: Structural changes in the FASD-CMC and FASD Service Networks have diminished the priority of

raising FASD awareness. PCAP members noted the presence of a strong evidence-based training program, but limited

opportunities to access and attend this training due to time and funding. Accessing evidence-based practices has also been noted as challenging by clinicians and clinic

directors.

Overall, our analyses suggest that research and evaluation are both influencing and changing FASD policy and practice through organizational structure. There is also a large area of policy and planning in organizational structure that is undergoing changes or pressure to change, but it is not readily apparent what role evidence has in this change. Our analyses also suggest that there is a desire amongst focus group participants to utilize and provide back evidence, but the current workload or program structures limit this opportunity for many people including clinic members.

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Methods of Communication

The second area in which evidence appeared to be playing a role in change and influence was through communication, including increased volume and vehicles of contact. Specifically, in terms of methods of communication, FASD-CMC members noted that increased communication between those interested in the dissemination of research played a role in influencing policy and practice. Additionally, PCAP members expressed the greatest influence on policy and practice in the increased communication of strong evidence-based training and ideas.

FASD-CMC Communication

FASD-CMC members expressed that the increase in availability of FASD research and best practice at the local and provincial levels has helped establish a line of communication between a wide range of personnel. This increase has arisen in two ways. First, the FASD-CMC has been involved in the planning of FASD conferences where researchers, service providers, program coordinators, policy makers, clients, and families come together to learn about FASD related research and best practice. These conferences also result in a variety of books and papers that share this information as well. Second, the FASD-CMC has used video conferencing to disseminate research and best practice. It should also be noted that participants expressed there have been recent changes in leadership that have led to a reduction in support of best practice dissemination. Specifically, one FASD-CMC member noted that there was no longer support for video conferencing in future action plans. Despite this, participants noted that they have been able to gather a large number of people to collaborate and communicate with as a result of the FASD-CMC’s efforts to disseminate information. One participant commented on previous conferences:

“…these are scientific experts, researchers that contribute, which is fantastic, it has brought in academic policy makers, service providers, clients, families, caregivers; like it’s, depending on the agenda has brought in a number of people, brought in a number of government reps and it’s gone from just Alberta to international. To me that is hugely significant.”

Similarly one member of the FASD Service Networks remarked that online professional development was a helpful resource provided by the FASD-CMC to obtain current information and research. As one member expressed, “I don’t think that would exist …across the board without the FASD-CMC, so that’s useful.” However, this was not a unanimous perspective for the Service Network focus groups, as one participant noted that “workshops are not always easily or readily available for parents or frontline staff.“

Emerging Understandings: There needs to be effective mediums through which research and best practice can be

disseminated and retrieved for FASD stakeholders, such that their roles and responsibilities can be completed more effectively and based more on current best practice.

Pressing Issues: Both FASD-CMC and Service Network members noted that there are a wide variety of

dissemination methods used to inform service delivery programs about research and best practice; however, Service Network participants commented that there have been some recent

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changes in leadership and structure within the FASD-CMC that have impeded the effectiveness of some of these dissemination efforts.

Evidence Towards Outcomes: Video conferencing and FASD-CMC-initiated conferences (along with the papers and books that

are created from them) have been seen as useful tools for accessing research and best practice for FASD stakeholders, as long as they are accessible.

PCAP Communication

Another area where evidence strongly influences the communication of ideas and knowledge is through PCAP. PCAP members mentioned an increase in training opportunities through webinars and local PCAP training and the use of research through conferences and online databases. This training is particularly useful because, as most participants noted, PCAP has a strong evidence-based foundation that has led to enhanced mentor knowledge and support of their practices. However, PCAP members have found limitations with evidence-based practice, and some have indicated a desire for current research to be less theoretical and more practical in nature so it can be easily put into use.

Emerging Understandings: PCAP members need to have a strong line of communication to research and best practice so that

they are able to fulfill their critical work with the best and most current training and education as possible.

Pressing Issues: PCAP members noted that there have been increased training opportunities for their program;

however, the research and best practice that PCAP mentors currently access are theoretical in nature and not practical enough to apply to their work.

Evidence Towards outcomes: Training opportunities via webinars, local PCAP training, conferences, and online databases have

been noted by PCAP members to be excellent tools to obtain research and best practice.

Clinic Communication

Finally, from the clinic’s perspective, many members acknowledged the importance of evidence and its use, but noted that there was simply very little time to communicate this evidence back to research in any manner. Our analysis of interviews with clinic members indicates that there is no clear or efficient line of communication for clinics to convey information or ideas back to the research. For example, one member expressed the limited time their clinic had to inform research because of the sheer number of assessments they had to complete: “…we are very much a clinical based clinic not a research based clinic, and um, when you see we are doing ten to fifteen a month, there’s not a whole lot of time to do anything but.”

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Emerging Understandings: Clinic members need access to research and best practice so that they have the best and most

current knowledge and training possible for their critical roles in FASD work.

Pressing Issues: Although clinicians and clinic directors noted that research is crucial to their practice, they

reported a lack of time, resources, and opportunities currently in place to promote an efficient and unobtrusive line of communication to research and best practice dissemination and retrieval.

Our analyses also suggest that there are several changes in communication that are not clearly evidence-based but noteworthy for future monitoring nonetheless. FASD-CMC members noted that communication is changing through the engagement of key stakeholders to the planning process, the committee’s involvement in conferences, presentations and attendance at meetings, and the councils that are created to ensure stakeholders are involved in the strategy planning process. For example, one FASD-CMC member stated that, “…the other significant changes at FASD-CMC over the past five years, [it] has reached out to other um agencies or stakeholders including… beyond just government ministries…” This emphasis on communication was also expressed at the Service Network level, where members noted the importance of knowing their communities and communicating regularly with one another, and building partnerships between programs within Service Networks, especially for rural members:

“[I]n a smaller town, you know the other programs, you know who’s doing what, and you know you can’t be the only show for FASD in town. So when a program needs help, they tend to know who to go to in my area… so I think we really do a good job of collaboration.”

Overall, evidence appears to be impacting FASD policy and practice through methods of communication. Whether this be through the FASD-CMC’s focus on conferences, video conferences, or books and papers, or the online training that PCAP members can undergo, there appears to be a wide range of communication established in which evidence is playing a role. However, there are also areas where this line of communication lags, such as in the clinics, where members noted that although some communication with research exists informally, there is no effective method of using evidence or informing research in their current line of practice.

Conclusions

Between changes and influences on organizational structure and methods of communication, it seems that evidence has a strong impact on policy and practice. This impact is made through informing the FASD-CMC on strategic decisions they must make through their relationships with academic institutions or research networks, or establishing a line of communication with a wide range of partners through the conferences in which they invest their resources. However, it is also apparent that there are still many areas where change or influence due to evidence is difficult to observe or measure. Additionally, there are areas where more change or influence is necessary, based on the expressed needs of members of various groups. It is through the two broad areas noted above that further work will be required as noted in the recommendation sections, in order to help guide future evaluations and improve the efficacy of FASD programs and organizations.

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Summary Both the FASD-CMC and PCAP have utilized research and evaluation results in planning and

decision making. Research and evaluation findings are used by FASD Service Networks to guide program

funding decisions which directly impacts policies and practice. Communicating through video conferencing and conferences have been seen by FASD

service providers as useful tools to access and disseminate research. Training opportunities via webinars, local PCAP training, conferences, and online databases

have been reported as tools that service providers use to improve their practice.

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Recommendations Structural changes in the FASD-CMC and the Service Networks have reduced the priority of FASD

awareness; thus, advocacy and FASD awareness needs to be acknowledged by the FASD-CMC as a regular and consistent priority.

PCAP members noted that their program is an evidence-based training program, but they have limited opportunities to access and attend training due to time and funding restraints; thus, a way forward may be to provide funding for PCAP members to attend one conference every year and continue to strengthen and increase online training opportunities for staff during the year, as PCAP members noted that accessing information online is the most efficient for them.

Set up a formal method (e.g., a research and evidence-based listerserv) of distributing and receiving research and best practice information to clinics that is easily accessible for members and does not impede on their current duties.

PCAP members noted that there have been increased training opportunities for their program members; however, the research and best practice that PCAP mentors are currently able to access are theoretical in nature and not practical enough for mentors to apply to their practice. Thus, it is recommended that future research should take a more tangible approach and convey a clear pragmatic path to how research is relevant to and can be implemented in PCAP practice.

Although research was noted by clinicians and clinic directors as crucial to their practice, they reported a lack of time, resources, and opportunities currently in place to promote an efficient and unobtrusive communication line to both research and best practice dissemination and retrieval; thus, it is recommended that evidence be documented in a manner that is unobtrusive to the current line of work.

In the already established lines of communication between PCAP members and researchers, there needs to be a stronger understanding of what practitioners are looking for in terms of research or best practice, so that future studies can focus on topics that are more relevant to the practice of FASD professionals.

Considerations for Year 7 Evaluation

For future evaluations, it will be helpful if strategies or practices that utilize evidence are documented in a simple and unobtrusive manner so as not to interfere with the current line of work of FASD personnel. Additionally, this documentation should still allow evaluators to understand how the process is completed through evidence so that future research and assessments will have stronger guidance regarding what is useful and needed. This will also provide a clear background and baseline from which to compare and contrast development and see how policy and practice are changing.

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Outcome 7:Mechanisms are in place to facilitate and encourage stakeholder engagement in the FASD Cross-Ministry Committee strategic planning process, as well as to provide stakeholder opportunities for networking and information sharing.

Evaluation Question 7a:What mechanisms has the FASD-CMC implemented to engage stakeholders in strategic planning activities?

Evaluation Question 7b:What opportunities have been available for stakeholders to engage in networking and information sharing?

Prepared by: Michelle Anderson-Draper, AndersonDraper ConsultingWith complementary information provided by Dr. Jacqueline Pei and the ACCERT evaluation team from the University of Alberta

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Acknowledgements

Funding for this report was provided by the Alberta Centre for Child, Family and Community Research (The Centre) via funding received from Alberta Health.

The authors would like to acknowledge the role and contribution of Tara Hanson, Director of Knowledge and Partnership Development, The Centre, in this evaluation, as well as the contributions of the FASD-Cross Ministry Committee.

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Executive Summary

The purpose of this review is to report on mechanisms to facilitate and encourage stakeholder engagement in the FASD Cross-Ministry Committee strategic planning process, as well as opportunities for networking and information sharing. The questions being evaluated are: “What mechanisms has the FASD-CMC implemented to engage stakeholders in strategic planning activities?” and “What opportunities have been available for stakeholders to engage in networking and information sharing?” A document review was conducted between March and June 2012. The report is enhanced with data from focus groups with the FASD-Cross Ministry Committee, FASD Service Network representatives, and Parent-Child Assistance Program (PCAP) members conducted by Dr. Jacqueline Pei and Dr. Cheryl Poth and the ACCERT evaluation team at the University of Alberta in February and March 2012.Mechanisms to engage stakeholders in strategic planning activities include strategic planning meetings, gathering input from partners, using research activities to inform the plan, Service Network activities and the development of FASD Service Network Guidelines to provide guidance and structure to the work of the Service Networks.

Opportunities for stakeholders to engage in networking and information sharing include conferences, the FASD Learning Series, Community of Practices, inter-agency meetings, electronic communication (e.g. e-mails, distribution lists, and social media), open houses, and community events.

FASD-CMC regularly invites key stakeholders to participate in the planning process, including the FASD-CMC annual strategic planning day. In addition, specific sub-councils were created and given stakeholder membership by the FASD-CMC as a mechanism to ensure that stakeholders are involved in the strategic planning process. Indirect stakeholder involvement in strategic planning also occurred through involvement in informing Service Networks’ business plans.

Formal opportunities to network and share information with stakeholders, according to the FASD-CMC, involve meetings, presentations, conferences, and guest lecturers. In addition, informal ways of engagement were also suggested by FASD-CMC participants, such as stakeholders’ willingness and responsiveness to engage. Further, it is valuable for the FASD-CMC to continue to be available and open to stakeholder involvement in order to engage in networking activities and learn from others’ experiences.

Regular communication does occur with both funded service providers and non-funded community agencies; however, regular communication does not necessarily mean effective communication, networking, or information sharing. Focus group participants suggested the need and desire to improve communication and collaboration with stakeholders and other systems.

Networking and sharing of information with and between stakeholders, albeit crucial and necessary for success, has several challenges including: having access to the proper funding in order to provide networking opportunities, barriers to sharing information in rural communities, maintaining stakeholder interest, and having the proper time to dedicate to networking and sharing information with stakeholders.

Based on the documents reviewed and the focus group findings, recommendations listed in the report are as follows:

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Review FASD Service Network Operating Grant Policies with Service Networks to ensure that the expected commitment required to meet expectations is realistic and make adjustments for efficiency where possible.

Explore options for increasing support for networking opportunities. For instance, promote the importance of group viewing and discussion as part of the FASD Learning Series. This could be in done in terms of providing discussion guides, facilitator notes, and hosting dollars.

Establish the ideal times and formats for networking events at conferences based on past conference feedback. Offer different types of “networking sessions” throughout the conference to meet participant needs.

Continue to incorporate principles of adult learning theory into the program design/delivery. Specifically, ensure all presenters from the Alberta FASD Conferenceunderstand the importance of “information sharing” and encourage them to incorporate engagement strategies throughout their presentations (i.e. asking the participants questions throughout to stimulate discussion, asking for volunteers to share examples or stories that illustrate points), when scheduling training.

For ease at the Year 7 and 10 Evaluations: Record and report on strategic planning, information sharing, and networking activities, using a common reporting template at the Provincial and Service Network level.

In the Year 7 Evaluation, explore the extent to which different stakeholder groups feel their perspectives and knowledge is being used by the FASD-CMC.

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Table of Contents

Outcome 7:................................................................................................................................................................................354Evaluation Questions 7a, 7b.............................................................................................................................................. 354

Introduction............................................................................................................................................................................. 354Methods..................................................................................................................................................................................... 354Definitions................................................................................................................................................................................ 355Limitations and considerations.......................................................................................................................................355Background.............................................................................................................................................................................. 356

FASD Strategic Plan.............................................................................................................................................................. 356Findings: Evaluation Question 7a...................................................................................................................................357Findings: Evaluation Question 7b..................................................................................................................................359Discussion................................................................................................................................................................................. 367Recommendations................................................................................................................................................................ 368Considerations for Year 7 Evaluation...........................................................................................................................369References................................................................................................................................................................................ 370

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Mechanisms are in place to facilitate and encourage stakeholder engagement in the FASD-CMC strategic planning process, as well as to provide stakeholder opportunities for networking and information sharing.

Research Report: Outcome 7

Outcome 7:

Evaluation Questions

7a: What mechanisms has the FASD-CMC implemented to engage stakeholders in strategic planning activities?

7b: What opportunities have been available for stakeholders to engage in networking and information sharing?

Introduction

The focus of this report is on identifying mechanisms in place to facilitate and encourage stakeholder engagement in the strategic planning process and opportunities for stakeholder networking and information sharing.

The year five evaluation is intended to provide baseline data and key recommendations to assist in continuous quality improvement of the initiatives conducted under the Strategic Plan. It should also inform subsequent evaluations to be conducted in years seven and ten of implementation.

This report provides an overview of the FASD-CMC, gives a description of methods used to answer the evaluation questions, and identifies limitations. The following section presents a summary of mechanisms in place to facilitate and encourage stakeholder engagement in the strategic planning process as well as opportunities for stakeholder networking and information sharing. The report concludes with a discussion and recommendations. The Appendix A contains a summary of the details from the KPMG1 focus group with Network Leadership Teams.

Methods

The primary method employed to prepare this report was a comprehensive document review that took place between March and June 2012. A document review is a way of collecting data by examining existing documents. Refer to the reference list for a complete listing of documents reviewed.

The report is enhanced with primary data collected from one focus group with the FASD-CMC and three focus groups with the FASD Service Networks. In the FASD-CMC focus group a total of 13 individuals participated, including seven CMC members, a former CMC member, two FASD Service Network Executive Directors, an FASD Service Network Coordinator, a community agency Chief Executive Officer and an FASD expert consultant. The FASD-CMC focus group was held on March 1st, 2012, and the criteria for selection included: FASD specialists who were attending the Annual Strategic Planning meeting and who were willing to participate in the focus groups. For the FASD Service Networks focus

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groups, a total of 21 members from the FASD Service Networks participated. The FASD Service Networks focus groups were held on February 29th, 2012, and the criteria for selection included: current employees of one of the 12 FASD Service Networks in Alberta (i.e. Service Network chairs and coordinators, program managers, administrative personnel, or leadership team members) who were attending an annual Network Leadership meeting. The focus groups were facilitated by Drs. Cheryl Poth and Jacqueline Pei (co-principal investigators) and the research assistants from the Alberta Clinical and Community-based Research Team (ACCERT) from the University of Alberta.

In addition, seven focus groups with the PCAP members were conducted by Dr. Cheryl Poth and the ACCERT evaluation team. In total 47 members from the PCAP program participated in the focus group held on March 16th, 2012 in Edmonton, and follow-up focus groups were held on April 19th and April 20th in Vancouver. The criteria for selection included: staff who has delivered PCAP mentoring services for a minimum of three years. The PCAP focus group findings are in the report to inform the discussion section on stakeholder perspectives.

Definitions

According to the Government of Alberta’s FASD 10 Year Strategic Plan,2 strategic planning refers to the range of activities performed by government that are aimed at recommending priority areas for government policy and action.

Stakeholder engagement refers to the sharing of information among the government, practitioners and the FASD client population to facilitate informed and balanced decisions regarding government priorities and actions. Engagement should occur among stakeholders at different levels of the system (e.g., between ministries and regional organizations) and stakeholders at the same level of the system (e.g., among regional organizations). Stakeholders include provincial, federal and local governments, community organizations, research organizations and advocacy groups.

Limitations and considerationsAs with any evaluation, there are limitations to this report:

3. Many sources of documented evidence, each with its corresponding strengths and limitations, have informed this review. The documents reviewed were not created with the intent of contributing to answering these evaluation questions. As such, focus group data collected as part of the evaluation to inform other outcomes also touched on these questions and therefore was used to supplement the document review

4. Participation in the focus groups was voluntary. All measures to enhance confidentiality and accuracy in the data have been undertaken (e.g., use of protocols, removal of names in transcripts, a systematic method of data analysis, and member checking by sending out summaries of the focus groups’ findings to participants to verify the information).

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Background

This section contains information on the FASD 10 Year Strategic Plan.

FASD Strategic Plan

The FASD 10 Year Strategic Plan provides an overview of the scope and impact of FASD on individuals and families in Alberta. It identifies a vision, mission statement, guiding principles, and a broad framework for the coordination, planning, and delivery of FASD services across Alberta in the areas of:

• Awareness and Prevention• Assessment and Diagnosis• Supports for Individuals and Caregivers• Research and Evaluation• Strategic Planning• Training and Education• Stakeholder Engagement

The following initiatives are part of the strategic planning process to inform the FASD 10 Year Strategic Plan:

1. Develop an inventory of current FASD programs and services in Alberta.2. Develop a set of principles to guide the strategic planning process.3. Develop an FASD service framework that identifies primary stakeholders, FASD service categories

and activities, and future-oriented outcome statements that reflect a shared vision of FASD supports and services by 2017.

4. Performed a gap analysis in order to identify major areas for development over the next 10 years in relation to the identified outcomes.

5. Developed broad strategies for each of the outcomes identified.

Service Networks engaged with community partners to learn and report on gaps in service, and Network Leadership teams conducted strategic planning to enhance existing services and develop new services. In addition, a SharePoint Site and protocol was developed and implemented by the Service Networks (Communication Working Group) to facilitate and improve inter-Network communication.3

According to Riley, Clarren, Weinberg and Jonsson,4 strategic planning is the foundation for all FASD initiatives, programs services and supports offered within the community. Examples of strategic planning include the CMC-FASD Operational Plan, FASD Network Service Plan, and FASD Service Network Operating Grant Policies. The following section provides details to support these examples of strategic planning.

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Findings: Evaluation Question 7a

What mechanisms has the FASD-CMC implemented to engage stakeholders in strategic planning activities?

Mechanisms to engage stakeholders in strategic planning activities include: strategic planning meetings, gathering input from partners, using research activities to inform the plan, Service Network activities and the development of FASD Service Network Guidelines to provide guidance and structure to the work of the Service Networks. See Table 1.

The following reports were used to answer this question:

Alberta Fetal Alcohol Spectrum Disorder Cross-Ministry Committee 2010-2011 Annual Report5

Badry, D. & Pelech, W. Fetal Alcohol Spectrum Disorder Promising Practices For Children in the Care of Alberta Children & Youth Services.6

KPMG Alberta FASD Service Networks Provincial Formative Evaluation Report.7

KPMG Network Leadership Teams focus group summary 1(see section 3.2.1 and Appendix A for more details)

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Table 1: Summary of evidence of mechanisms to engage stakeholders in strategic planning

Mechanisms to engage stakeholders in strategic planning activities

Evidence

Cross Ministry Committee (CMC)-FASD Operational Plan activities

There have been a number of activities undertaken to address strategic planning at provincial and local levels. For instance, CMC held strategic planning days to ensure that the ongoing evolution of the plan is achieving the established targets. CMC also engaged stakeholders such as the Canada Northwest FASD partnership, the FASD Service Networks and other service providers along with individuals living with FASD and their caregivers to continue to develop the Plan.5

Research and evaluation has been undertaken to inform the Strategic Plan. For example, the FASD Community of Practice research project6 provided research findings to be used in FASD strategic planning. FASD-CMC reported using the finding to assist in the ongoing service needs for FASD affected children and their families/caregivers.

FASD Network Service Plans:

-stakeholder input through meetings, and strategic planning days

The Service Networks are tasked with developing or expanding services to fill existing gaps across the lifespan and are in-line with the following areas in the FASD 10 Year Strategic Plan: Assessment/Diagnosis, Targeted and Indicated Prevention and Supports for Individuals and Caregivers.

In the KPMG Network Leadership Team focus groups,1 participants reported ways they engage stakeholders to gather input into their strategic planning. Examples are provided below.

Meetings: Central Network reported annual meetings are held with funded service providers to discuss progress and in September there are discussions regarding information to be included in the Business Plan that is due on October.

The Edmonton Network reported hosting annual strategic planning meetings as a mechanism to interact and engage with their funded service providers.

The Calgary Network reported that regular membership meetings help inform business/strategic plan development.

Strategic Planning Day: The Southeast Network reported that all members are invited to the quarterly membership meetings and other meetings, such as the annual strategic planning meeting. The annual general meeting (AGM) is open to the entire community. Any interested stakeholder can also attend the Strategic Planning Day and provide on-going feedback as part of the Network’s needs assessment process.

FASD Service Network Guidelines: provide structure

To inform the Formative Evaluation Report, Network Leadership Teams were asked about whether they had used the program guidelines, resources and

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and boundaries. tools developed by the FASD-CMC to assist in the planning and operations of their Network. All 12 Service Networks indicated they did use the FASD Service Network Program Guidelines in the planning and operations of their Service Network as well as the tools made available by the FASD-CMC (p.45).7

Almost all Service Networks (10/12) agreed that the guidelines, resources and tools assisted them by increasing their competence levels, providing structure and boundaries, and providing consistency in their reporting (p.45).7 Service Networks did express some challenges in using the guidelines, particularly that the expectations set by the guidelines required a large amount of time and commitment to meet (p. 53).7

FASD-CMC and FASD Service Network Focus group Findings

Findings from the FASD-CMC and FASD Service Network focus groups can add to and triangulate the findings from the document review stated above. The participants in the FASD-CMC focus groups identified three main mechanisms to engage stakeholders in strategic planning: 1) invitation to participate in strategic planning events, 2) creation of specific councils, and 3) informing the Service Network’s business plan and connecting the Service Networks to key stakeholders.

First, it was noted that the FASD-CMC often invites key stakeholders to participate in the planning process, including the FASD-CMC annual strategic planning day. In fact, participants pointed out that there were a number of key stakeholders participating in the FASD-CMC focus group because they were invited to the annual FASD-CMC strategic planning day during which the focus group took place. Second, participants noted that specific sub-councils were created and given stakeholder membership by the FASD-CMC as a mechanism to ensure stakeholders are involved in the strategic planning process: “CMC puts together these councils, the PCAP council and the Supports [and Services] Council, those are groups of stakeholders who definitely, who are definitely engaged in any form of strategic planning.”

Third, participants described how indirect stakeholder involvement in strategic planning occurs through their involvement in informing each Service Networks’ business plan and connecting them to key stakeholders. A participant explained: “As part of the network funding process, the Service Networks themselves engage in a broad strategic planning with all the stakeholders and that information gets fed up through their business plans to this table,” suggesting that the FASD-CMC tries to keep the Service Networks informed and helps the Network coordinators connect with different stakeholders, which in turn allows stakeholder information to be shared and filtered up to the FASD-CMC level to aid in their strategic planning.

Findings: Evaluation Question 7b

What opportunities have been available for stakeholders to engage in networking and information sharing?

Opportunities for stakeholders to engage in networking and information sharing include: conferences, the FASD Learning Series, Community of Practices, interagency meetings, electronic communication (e.g. e-mails, distribution lists, and social media), open houses, and community events.

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The following reports were used to answer this question:

Network Leadership Teams focus group summary1 (see section 3.2.1 and Appendix A for more details)

Anderson-Draper, M. FASD 10 Year Strategic Plan - 5 Year Evaluation, Outcome # 4 Report: Training and Educational Resources for Service Providers, Families and Caregivers.8

Badry, D. & Pelech, W. Fetal Alcohol Spectrum Disorder Promising Practices For Children in the Care of Alberta Children & Youth Services. University of Calgary, Faculty of Social Work. 6

CASA Child, Adolescent and Family Mental Health. FASD Videoconferencing Learning Series 2010/11 Evaluation Final Report.9

Alberta FASD Conference Reports: 2008 - 201110-13

Network Leadership Team

KPMG Focus Group

In their role as provincial evaluator, KPMG conducted focus groups with representatives of 12 Network Leadership Teams in 2011. The responses to the following 6 questions provide information about ways Service Networks have engaged in information sharing. Refer to Appendix A for additional details provided by the Service Networks.

1. Does your Service Network regularly communicate with your funded service providers? What types of communication methods do you use?

All but one Service Network responded that they regularly communicate with their funded service providers. One respondent noted that they do not have funded partnerships.

The types of communication mentioned include: E-mails, phone calls, Twitter, Facebook, blog, distribution lists, meetings (face to face, annual, monthly), minutes from meetings, open houses, events, presentations, reports, teleconferencing, and videoconferencing.

The most common method of communication listed was phone calls, followed by meetings, and electronic means of sharing information. It is interesting to note the use of social media as a means of sharing information.

2. Does your Service Network regularly communicate with other (non-funded) community organizations in your area? What types of communication methods do you use?

Types of communication with non-funded community organizations include: meetings (face to face, interagency), distribution of minutes, community events, presentations, newsletters, websites, letters, emails (fan outs), phone calls, conferences, learning opportunities (webinars), training, community consultations, open houses, newspaper, i.e. FASD awareness article and advertisements for conferences.Several Service Networks noted being part of interagency meetings as a way to share information.

3. Please provide examples of how your Service Network interacts and engages with its funded service providers.

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Service Networks reported several different ways in which they interact and engage with their funded service providers. For instance, they interact and engage through meetings, presentations, community events, training, educational sessions, community consultations, committees (e.g. Aboriginal subcommittee, working group), collaboration (e.g. case management), the mobile diagnostic team, and strategic planning meetings.

4. Please provide examples of how your Service Network interacts and engages with other (non-funded) community organizations in its area.

Service Networks interact and engage with other (non-funded) community organizations in their area through direct invitation, participation in community and public events, monthly meetings, training opportunities, conferences, educational sessions, presentations, teleconferences, videoconferences, annual strategic planning meetings, and distribution of information. One Service Network reported that being part of the FASD Community of Practice is an example of how they interact and engage with community organizations in their area.

5. Please provide an example of how your Service Network’s regular communications and other interactions with organizations in the community have benefited your Service Network.

Examples include: Raised awareness of FASD and Service Networks Increased membership in Service Network Reached more people and provide more services Identified gaps in service Created capacity for new resources and service and avoided duplication Improved collaboration and partnerships between organizations for more seamless

service delivery Changed how services are delivered and quality Built connections, increased linkages Became more collaborative with other groups, create new partnerships Helped staff understand roles and issues to provide client support Informed business and strategic plan development Collaborated to offer training events

6. Please provide an example of how your Service Network’s regular communications and other interactions with organizations in the community have benefited those organizations.

Examples include:

Increased awareness of FASD Improved access to new resources, information, programming, workshops, training Staff development workshops for a reasonable fee Knowledge, practice tools, skills and abilities Contacts: organizations have someone to call if they are struggling to support a person with FASD

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Referrals have become more streamlined Service gaps identified Invitations to attend events and resource fairs Participation in organization of community events A sense of community and belonging Improved resource sharing Improved relationships Awareness of Métis Settlement Culture

ACCERT Focus Group

In the KPMG document examples provided above, the Service Networks were asked questions about regular communication and engagement with stakeholders. In the ACCERT evaluation team’s focus groups, the FASD Service Networks were asked open-ended question about communication and collaboration, which produced some contrary results to those presented in the KPMG focus group results. Based on the KPMG results it appears that regular communication does occur with both funded service providers and non-funded community agencies; however, regular communication does not necessarily mean effective communication, networking, or information sharing. The ACCERT evaluation team’s network focus group participants did acknowledge that they communicate with some of their stakeholders, but they also suggested the need and desire to improve communication and collaboration with stakeholders and other systems.

Two specific themes emerged as important issues for the FASD Service Networks based on their prevalence in all three focus groups: 1) need for coordination between services, and 2) relationship building.

Coordination between services was conceptualized as the need for services and programs to work together, communicate, and share information in order to make service delivery seamless and consistent for the population. One example provided evidence of the Service Networks’ efforts to reach out to other organizations who work with the population:

“…so if we could have people from maybe AISHk and a rep from PDD,l FSCD,m the CFSA,n that would be helpful. We've tried at our Network to get some of those, they will come once in a while, they will come for a meeting or two and then they don't show up again.”

The participant is describing that other service providers, especially provincial programs, may recognize the value in coordinating, but it is usually short lived. Furthermore, discussion persisted around the potential difficulties of coordination, and an example was given that Alberta Health Services tried to get service providers to coordinate, but it led to tensions over whom was receiving funding and how funding was being distributed:

“Alberta Health Services was actually a lead in our community and our region in really coordinating services around FASD… so what they found is, when they came together and started to work collaboratively, the service providers were very involved. That didn't work as well because it became

k Assured Income for the Severely Handicapped (AISH)l Persons with Developmental Disabilities (PDD)m Family Support for Children with Disabilities (FSCD)n Child and Family Services Act (CFSA)

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‘Why didn't I get funding?’ and ‘Why did you get funding?’ so there [were] a lot of issues and so it was a developmental process for the Network to start then evolving.”

Even when coordination between services was reported as being difficult participants recognized that building relationships within and between systems can prove to be a valuable resource:

“…inviting those folks to the table and being able to trouble shoot if you like different individuals, not only have we, you know, come with some good solutions but we’ve built a really neat cross human service group that has gotten to know each other, now they collaborate in community outside of us because it’s face to name, it’s when people know each other so we kind of work at it in two levels.”

Furthermore, since both the community and the FASD-affected population are also both important stakeholders, it may be valuable to briefly note the barriers addressed by the Service Network focus group participants around the sharing of information in the community and with the FASD population. The participants discussed the need to educate others and increase awareness of FASD in order to promote a better understanding of the population and stronger service delivery within the community for the FASD population. One example was provided to illustrate the challenges that the Service Networks have sharing information with the FASD-affected population:

“… it doesn't matter if it’s FASD or anything that has to do with parenting or any information you are trying to get out into the community- there's road blocks, and we’re talking about many families whose, you know, the parents work two jobs, you know there’s the children in the house, what do you do for childcare, what do you do for timing right?…I don't know what the answer is, but I just think as much as we try to kind of figure out how to share information and get it out there for whatever topic, there's road blocks.”

Further, being located in a remote or rural community was one of the main challenges that the FASD Service Networks discussed as they try and move forward on FASD initiatives:

“When I was first hired, that was one of my priorities that I saw as a priority in the LOCATION settlements was the lack of education on FASD. When I brought it to my then supervisor, she said no we are not allowed to educate, we’re past that, you have to move on and get supports and I said well, how can you put supports in place if people don't even understand what you need to support?”

The quotation above is referring to strategic planning around the three pillars: awareness, assessment, and support, and appears to be suggesting that there is an expectation that the Service Network coordinators should be moving forward beyond the awareness pillar in their communities. However, the issue lies in each Service Networks’ ability to be responsive to their population’s needs. For example, promoting awareness and prevention, effective service delivery, and information sharing can be very challenging in these remote communities, as each respective community can have exceptional and unique circumstances that need to be individually addressed.

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Networking and sharing of information with and between stakeholders, albeit crucial and necessary for success, has many challenges.

Summary of Challenges and Barriers for Networking and Sharing information access to the proper funding to provide networking opportunities barriers to sharing information in rural communities maintaining stakeholder interest having the proper time to dedicate to networking and sharing information with stakeholders

Opportunities for Networking and Information sharing

In addition to the opportunities provided at the Service Network level, the following table illustrates opportunities at the provincial level.

Opportunity Evidence of Networking and Information SharingAlberta FASD conferences held in 2008, 2009, 2010 and 2011.

(searched conference final reports for relevant statements associated with the following terms: “sharing,” “information” and “networking”)

Opportunity to network and share information at the annual conferences, including a networking evening and Community Showcase. Conference participation is available to representatives from provincial, federal and local governments, community organizations, research organizations and advocacy groups, as well as families/caregivers and individuals with FASD.

2008“All sessions that I attended I felt that they were pertinent and helpful to me in my work, I will be sharing the information gathered with my colleagues.”“Excellent/exceptional/fabulous MC/Keynote speakers – insightful/well informed/engaging/delightful/relevant/ thought provoking, found a balance between sharing thoughts and comments.”“I hoped this would be an open format for discussion and sharing.”

In 2009, some participants noted they would appreciate the opportunity for more networking at the conference. “The reception (food and entertainment) was great – but because the entertainment was so long, very little networking occurred.”“The network and entertainment reception was well put together but the balance between entertainment and networking was too heavy on the entertainment and a bit light on the networking opportunities.”“The conference was good. The community showcase I found lacking, there could have been more information and people available to talk to.”“Could have been more interactive – the room had lots of expertise that could have been tapped into. A session linked to sharing strategies would have been great.”

2010“I would have liked to have seen more local resources during the networking reception.”“It would be nice if there were an informal evening networking opportunity for the presenters only. As they are presenting, they miss sessions they would like to attend and would appreciate the opportunity to info share with each other.”

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2011“Have the networking fair over the lunch hours.” “Loved hearing the information – left me thinking! More time for questions!”“Great interactive session with information that is very transferable to work.”

FASD on-line Community of Practice

FASD on-line Community of Practice is a new resource site, launched in 2012. It provides a way for people to connect and communicate with each other, build and join groups, post resources and participate in discussions. The site can be found at www.fasdcommunity.ca.

In June 2012, there were over 240 members registered. There have been several groups started and the site includes an events page to promote upcoming training opportunities.

This is an innovative way to connect families/caregivers, service providers, students, researchers and others interested in learning more about FASD and sharing information and resources.

FASD Community of Practice Research project

A one day Community Showcase was held on November 30, 2010, to provide preliminary research results from the 18-month implementation of the Promising Practices project - comments from symposium participants indicate the opportunity to share information and to network.6

Networking with:

Alberta Human Services The Foster Care Support Alberta Health Services Organizations working with immigrant and Refugee communities which offer

support services addressed to FASD clients

The research was undertaken with a principle of creating a strong understanding of the areas of involvement and commitment to a support system, each one to be identified, and networking encouraged.

Government of Alberta FASD Learning Series

As described in the Outcome 4 report on training,8 there is considerable uptake of the learning series resulting in increased access to FASD information. This is supported by data which demonstrates stronger uptake in rural regions, and by reports from participants stating the technology enabled them to participate.9 Therefore, maintaining support to the learning series and continuing to promote the archived series is warranted.

Group dynamics and networking opportunities are an important part of training opportunities. Examples of bringing people together, like the Central Alberta Network film reviews, offers an opportunity for participants to learn more about FASD and provides an opportunity to ask questions, dialogue, and to connect with each other. Local communities should be encouraged to continue to provide venues for hosting the videoconferences.

The ACCERT evaluation team’s FASD-CMC focus group findings also provided evidence of networking and sharing opportunities for stakeholders, which can strengthen the results provided above. Some of the FASD-CMC participants, who were also considered FASD stakeholders, added that the FASD-CMC has

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made itself accessible to stakeholders through their committee’s involvement in conferences, presentations and attendance at meetings. The comments of two stakeholder participants summarize this point: “they’ve made themselves pretty visible and available to a variety of different stakeholder groups through… PowerPoint presentation or conferences, being speakers…” and the same participant added “CMC attends Network provin[cial meetings]… the leadership of the Networks across the province meet monthly and they always attend.” An FASD- CMC member contributed to this conversation by emphasizing that, “the presentations that we’ve been engaged in aren’t just always speaking to the crowd, it’s the opportunity and the invite to hear from the crowd so that they can help inform.” This participant appears to be suggesting that presentations are a key mechanism in stakeholder engagement, as presentations are often done with the intention of gathering and sharing information with stakeholders. Thus, from the focus group, there is acknowledgement from the FASD-CMC of the value in having a bi-directional sharing relationship with stakeholders, in which the FASD-CMC can share information with their stakeholders, and also utilize the expertise of the stakeholders to inform their own learning and planning.

Another brief discussion in the FASD-CMC focus group occurred around strategic planning and use of the word “mechanism” to describe stakeholder engagement. For example, one FASD-CMC participant described a more informal type of stakeholder engagement:

“The word I’ve used in some settings is it’s organic. Sometimes organic almost seems antithetical to strategic because there’s something about being able to be responsive... something that you never dreamed possible shows up on your door and there is a willingness and a wantingness to respond, and so it kind of contradicts that idea of strategic planning because there is an agility to it um, that it it’s hard to define, it’s not a mechanism, it’s more like a mindset and a presence and a willingness to go forward, so there’s a spirit to it, that just doesn’t quite match the word mechanism.”

This participant appears to be suggesting a unique mechanism that can be described as a sense of responsiveness and willingness by stakeholders that occurs at a more organic, natural level than strategic planning, and motivates stakeholder engagement.

In summary, the formal opportunities to network and share information with stakeholders, according to the FASD-CMC, involve meetings, presentations, conferences, and guest lecturers. In addition, informal ways of engagement were also suggested by FASD-CMC participants, such as stakeholders’ willingness and responsiveness to engage. Further, it was also suggested that it is valuable for the FASD-CMC to be available and open to stakeholder involvement in order to engage in networking activities and learn from others’ experiences.

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Discussion

The FASD-CMC has implemented several mechanisms to engage stakeholders in strategic planning with both direct (e.g., include involvement in strategic planning day, integration of Service Network annual reports), and indirect mechanisms (e.g., receiving and gathering feedback from stakeholders at presentations and conferences). To illustrate the effectiveness of networking and sharing opportunities from a stakeholders’ point of view, we draw on the findings of the focus groups conducted by the ACCERT evaluation team.

The Parent-Child Assistance Program (PCAP) was one of the councils created by the FASD-CMC to provide programming and preventative service delivery to women who are at high risk to consume alcohol during pregnancy. The ACCERT evaluation team’s aim in conducting focus group with the PCAP mentors were to (a) to document the experiences of key stakeholders in the planning and delivery of FASD programs, with a focus on collaboration (b) to generate shared understandings related to best practices in FASD planning and service delivery. A total of 47 individuals from PCAP programs across Alberta participated in 7 focus groups. These groups consisted of PCAP mentors, program supervisors, and directors.

Since the PCAP council is one of the council’s that the FASD-CMC created and thus has stakeholder membership, PCAP participants were asked to discuss the ways in which the FASD-CMC has affected their work in order to gather their perspectives of the FASD-CMC’s role. Participants reported, in general, that they were not very familiar with the FASD-CMC’s work or participants, and reported not having direct contact with individuals from the committee. PCAP participants acknowledged that the extent of their knowledge around the FASD-CMC was that they are a governing committee responsible for making funding, training, and research decisions. Although the PCAP members provided positive recognition for some of the FASD-CMC’s efforts, there was an overall consensus among participants in all seven focus groups that more open communication with the FASD-CMC would make them feel more informed and likely make collaboration between the stakeholders and systems easier and more effective.

In short, mechanisms have been put in place by FASD-CMC and Service Networks to encourage stakeholder engagement in the strategic planning process, opportunities for networking and information sharing. However, there is always room to enhance existing mechanism by continuing to offer both formal and informal occasions to communicate and working to address the barriers noted in this report (e.g. access to the proper funding in order to provide networking opportunities, barriers to sharing information in rural communities, maintaining stakeholder interest, and having the proper time to dedicate to networking and sharing information with stakeholders).

It is important to note the networking and information sharing that takes place is part of training. There is a detailed report dedicated to FASD training opportunities provided for service providers, families, and caregivers. This report only briefly touches on those opportunities, therefore, the reader is encouraged to refer to the FASD 10 Year Strategic Plan, Year 5, training evaluation report for a detail listing of training.8 Nevertheless, there are several opportunities for networking and sharing information noted in this report. For instance, interagency meetings, electronic communication (e.g. e-mails, distribution lists, and social media), open houses, and community events are all ways that Service Networks communicate with service providers and organizations.

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In terms of formal training opportunities it becomes necessary for presenters at the Alberta FASD Conference to balance “information provision” with “information sharing” in order to maximize engagement. To make the most of the information sharing during training sessions, presenters should strive be interactive and engaging by inviting participants to share their experiences on the topic, and have questions embedded throughout to facilitate discussion. This becomes a fine balance between providing information in the allotted time frame and offering an opportunity for participants to share information. This is not always easy but is beneficial if the goal is to provide an avenue to share information not simply disseminate it.

Accessing research is an important part of evidence based information sharing. When asked about research, training, and information sharing in the focus groups, one stakeholder group, PCAP members, discussed ways in which they accessed research and shared information within the program. PCAP members suggested that they access research and information in three ways: internet searches, conferences, and webinars provided by the FASD-CMC. For example, a participant suggested: “What the CMC has provided that has been helpful of course has been the FASD conferences; the online Learning Series is excellent. It’s great when you’ve got new staff and you can say okay, even existing staff too, to get more information. The research part has been awesome.” Conversely, other participants reported having difficulties accessing up-to-date research, as they were unsure where to find it.

Participants also mentioned that conferences and online resources are the most effective way of sharing information, and indicated the desire for more opportunities to network with other PCAP programs to share resources. Issues around information sharing discussed by PCAP members included lack of funding allocated to networking opportunities and lack of work time in order to participate in activities such as conferences and networking with other programs.

Based on the information reviewed and collected for this report, six recommendations are listed below.

Recommendations

1. Review FASD Service Network Operating Grant Policies with the Service Networks to ensure that the expected commitment required to meet expectations is realistic and make adjustments for efficiency where possible (completed – living document). (Recommendation supported by KPMG Evaluation report).

2. Explore options for increasing funding to support networking opportunities. For instance promote the importance of group viewings and discussion as an integral part of the FASD Learning Series, which could be in done in terms of providing discussion guides, facilitator notes, and hosting dollars. (Recommendation supported by Service Network feedback, ACCERT focus group findings)

3. Establish the ideal times and formats for networking events at annual conferences based on past conference feedback. Offer different types of “networking sessions” throughout the conference to meet participant needs. (Recommendation supported by conference evaluations).

4. Continue to incorporate principles of adult learning theory into the program design/delivery. Ensure all presenters at the Alberta FASD Conference understand the importance of “information sharing” and encourage them to incorporate engagement strategies throughout their presentations (i.e. asking the participants questions throughout to stimulate discussion, asking for volunteers to share examples or stories that illustrate points), when scheduling training. (Recommendation supported by conference evaluations).

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Considerations for Year 7 Evaluation Record and report on all strategic planning, information sharing, and networking activities, with

a common reporting template, at the Provincial and Service Network levels.

Explore the extent to which different stakeholder groups feel their perspective and knowledge are being used by the FASD-CMC.

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References

1. Alberta FASD Cross-Ministry-Committee. Alberta Fetal Alcohol Spectrum Disorder (FASD) Cross-Ministry Committee 2010/2011 Annual Report. 2011.

2. KPMG. Alberta FASD Service Network Leadership Team Summative Focus Group Questions and data summary2011.

3. Government of Alberta. FASD 10- Year Strategic Plan: Government of Alberta; 2008.4. Alberta FASD Cross-Ministry-Committee. FASD Service Network Program, 2009/2010 Annual

Report.2010.5. Riley EP, Clarren S, Weinberg J, Jonsson E. Fetal Alcohol Spectrum Disorder: Management and Policy

Perspectives of FASD. Weinheim, Germany: Wiley-Blackwell; 2010.6. Badry D, Pelech W. Fetal Alcohol Spectrum Disorder Promising Practices For Children in the Care of

Alberta Children & Youth Services. Calgary: University of Calgary;2011.7. KPMG. Alberta FASD Service Networks Provincial Formative Evaluation Report2011.8. Anderson-Draper M. Outcome # 4 Report: Training and Educational Resources for Service Providers,

Families and Caregivers. 2012.9. Child Adolescent and Family Mental Health (CASA). FASD Videoconferencing Learning Series 2010/11

Evaluation2011.10.Brook D. Alberta FASD Conference Report: Government of Alberta; 2008.11.Amyotte A. Alberta FASD Conference Report: Government of Alberta; 2009.12.Amyotte A. Alberta FASD Conference Report: Government of Alberta; 2010.13.Amyotte A. Alberta FASD Conference Report: Government of Alberta; 2011.

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Outcomes 8 and 9:

Outcome 8:Secondary disabilities associated with FASD and their impact on Albertans is reduced.

Evaluation Question 8:Is there evidence of a reduction in secondary disabilities associated with FASD and their impact on Albertans

Outcome 9:The cost of FASD to Albertans is reduced.

Evaluation Question 9:Has the cost of FASD to Albertans been reduced?

Thanh Nguyen, Jessica Moffatt, Anderson Chuck, Philip Jacobs, Egon JonssonINSTITUTE OF HEALTH ECONOMICS1200—10405 JASPER AVENUEEDMONTON, ALBERTA T5J

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An Economic Analysis of the Impact of the Alberta FASD Cross – Ministerial Committee

Social Return on Investment - Addressing Secondary Disabilities

Executive Summary

The aim of this report was to provide an economic assessment of the potential impact of the Service Networks, focusing on secondary disabilities associated with FASD. The specific secondary disabilities addressed within this report include crime, homelessness, mental health problems, and school disruption (for children) or unemployment (for adults).

We used a cost benefit analysis approach, where the outcomes were monetized to compare the differences between benefits and costs. We defined the benefits as a reduction in the occurrences of secondary disabilities. We assessed the benefits of the Network by comparing two scenarios– Option 1) the impact of the current 12 Service Networks across Alberta on secondary disabilities and the costs associated with these disabilities (in other words, do secondary disabilities and costs increase, decrease or stay the same because of the Network), and Option 2) the impact and costs of secondary disabilities if no Service Network was in place across the province. An overview of the economic model used in this analysis is shown in Figure 1.

Figure 1: Flowchart of economic model

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Number of FASD

individuals served by the

NetworkN= 1274

Option 1: NETWORK

Option 2:NO NETWORK

Number of FASD

individuals who stay in the NetworkN= 1235

Number of FASD

individuals who leave in the

NetworkN= 39

Impact on secondary disabilities

Impact on secondary disabilities

Impact on secondary disabilities

The comparison of these two scenarios was conducted using a decision analytic model to assess the potential benefits of the Network on secondary disabilities. The savings were the difference in costs between the two scenarios.

Data on probabilities, costs, study populations, and the effectiveness of the Network were obtained from Alberta sources, available published literature and expert opinion. We used a societal perspective and a 1-year time horizon for analysis. All costs and benefits reflect 2012 Canadian dollars.

FindingsCorresponding to effectiveness rates from 40% to 80%, the Network reduced between

187 to 281 occurrences of school disruption among children; 144 to 289 occurrences of being unemployed among adults; 297 to 593 occurrences of crimes committed; 456 to 930 occurrences of a mental health problem; and 74 to 148 occurrences of being homeless.

The total monetary benefits for these reductions were estimated to be between $8.87 to $17.73 million per year at a cost of $6.12 million. This means that even at the lowest estimate of effectiveness (40%), the Network produces net monetary benefits. The overall social return of the Network is $1.5 to $2.9 for every $1 invested.

The effectiveness level at which the Network became cost-saving (a positive return on investment) was 25% to 32%.

RecommendationsThe findings of this evaluation give rise to the following recommendations.

Recommendation 1: Assess the full range of benefits of the NetworkDue to a lack of data this evaluation assessed only the impact of the Service Networks to secondary disabilities, which excluded the benefits associated with the many preventative initiatives occurring within the Service Networks. To truly understand value for money, it is recommended that future evaluations include the full range of benefits associated with the Service Networks.

Recommendation 2: Define what data will be routinely collectedFor future economic evaluations we have defined the following data which should be routinely collected:

Longitudinal data which follows individuals as they receive services within and outside of the Service Networks and should be linkable with existing administrative data sets.

Data that reports on the rates of secondary disabilities such as crime, employment, homelessness and mental health when receiving and not receiving program services.

Data to clearly identify and report on the number of individuals, caregivers, and family members who access services from the Service Networks.

Data to specify the type and quantity of services participants within the Service Networks are receiving.

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Data tracking the time participants spend in the Service Networks and the time they are not accessing services from the Service Networks.

Recommendation 3: Define how the capacity needed to collect data will be enhancedProvide resources to improve the capacity of Service Networks to collect and monitor data. Such capacity could include a systemic means of data collection through a universal system across all 12 Service Networks, or further training into the importance of data collection for staff working with the Service Networks.

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Table of ContentsExecutive Summary...........................................................................................................................................................372Findings..................................................................................................................................................................................... 373

Introduction.......................................................................................................................................................................... 376

Secondary Disabilities & FASD Service Networks...........................................................................................377

Objective & Scope...............................................................................................................................................................378

Methods.................................................................................................................................................................................... 3781. Study population........................................................................................................................................................3792. Secondary disabilities..............................................................................................................................................3793. Model............................................................................................................................................................................... 3794. Model inputs.................................................................................................................................................................3805. Sensitivity analysis....................................................................................................................................................382

Results....................................................................................................................................................................................... 3821. Study populations......................................................................................................................................................3822. Number of people with FASD served by the Network per year............................................................3833. Number and costs of secondary disabilities with no Network..............................................................3834. Benefits of the Network: number and costs of secondary disabilities reduced by the Network............................................................................................................................................................3845. Cost of the Network...................................................................................................................................................3856. Net benefits...................................................................................................................................................................3857. Sensitivity analysis results.....................................................................................................................................386

Discussion...............................................................................................................................................................................387

Limitations............................................................................................................................................................................. 387

Recommendations............................................................................................................................................................. 388

References.............................................................................................................................................................................. 389

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Secondary disabilities or adverse outcomes associated with FASD and their impact on Albertans is reduced.

The cost of FASD to Albertans is reduced.

Research Report: Outcomes 8 and 9

Outcome 8:

Evaluation Question8: Is there evidence of a reduction in secondary disabilities associated with FASD and their impact on Albertans

Outcome 9:

Evaluation Question9: Has the cost of FASD to Albertans been reduced?

Introduction

Fetal alcohol spectrum disorder (FASD) refers to a spectrum of disorders including Fetal Alcohol Syndrome (FAS), partial Fetal Alcohol Syndrome (pFAS), alcohol related neurodevelopmental disorders (ARND), and alcohol-related birth defects (ARBD). Within Alberta FASD affects approximately 36,000 Albertans,1 with significant costs to the individual and society. There is no cure for FASD, and those who are affected face lifelong difficulties and will require substantial supports. Difficulties arise from both the primary disabilities associated with FASD, as well as secondary disabilities, which are the repercussions that result from the interactions between primary disabilities and the social and physical environmental conditions.

In the 1996 report Understanding the Occurrence of Secondary Disabilities in Clients with Fetal Alcohol Syndrome (FAS ) and Fetal Alcohol Effects (FEA), Streissguth et al.2 define secondary disabilities associated with FASD as those which could be managed through appropriate supports and interventions. Linking FASD-affected individuals with the needed supports could mean the individual receives adequate case management, thereby decreasing the effects and costs associated with secondary disabilities. Specific recommendations to address secondary disabilities within the report include:

Facilitate early diagnosis;

Encourage stable long-lasting placements in nurturing homes;

Improve the circumstances of children in alcoholic/drug abusing homes;

Develop, evaluate, and implement methods to detect subgroups of people with FAS/FAE who are in special need of interventions; and

Promote communities, families, and FAS/FAE affected individuals to work together.

The cost of FASD, especially when considering the costs associated with secondary disabilities, can be quite high to the individual, families, and to society. Much of the literature examining the cost of FASD

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only consider FAS, which is a small portion of the population affected by this disability and therefore produces a conservative estimate of the actual costs. A true understanding of the cost of FASD is therefore difficult to obtain. Stade et al.3 conducted a cross-sectional survey examining direct and indirect costs associated with FASD and estimated that the annual cost of FASD in Canada is approximately $4 billion. A more recent publication, Thanh et al.4 found the annual cost of FASD in Canada is approximately $6.2 billion. In this study 30% of the total costs were attributed to healthcare, 24% to educational services, 19% to social services, 14% to correctional services, and 13% classified as other.

To address FASD in Alberta the provincial government first established an FASD Cross-Ministerial Committee (FASD-CMC) in 2003, with the subsequent creation of the Alberta’s 10-Year FASD Strategic Plan in 2006. These two initiatives were created to formally provide a multi-sectorial approach to addressing FASD across the province. With an annual planned budget of $16.5 million, funding has been established to support many initiatives occurring under the FASD-CMC.5

One of the key initiatives coming out of the Strategic Plan was the creation of 12 FASD Service Networks across Alberta, which is comprised of numerous organizations and agencies. The Service Networks aim to diagnose FASD, provide continuous supports to FASD affected individuals across the lifespan, raise population-level awareness about FASD, and provide targeted and indicated FASD prevention initiatives. Specific services provided through the Service Networks include:

Assessment and diagnosis;

Enhanced support for at risk women;

Community-based supports for those affected by FASD, and

Life-skills programs for youth and adults living with FASD.

Each of the 12 Service Networks are community-driven and under a Network Leadership Team determine their own priorities and strategic directions based upon the needs of the population served.5

In the 2010/2011 period, 1944 individuals (both those with FASD and their caregivers) accessed the Service Networks, with 562 individuals receiving assessment and diagnosis services, 247 receiving preventative services, and 675 receiving support services.6 The Service Networks provides services to individuals diagnosed with FASD. Due to the uniqueness of each Service Networks, service delivery may vary significantly between them. Assessment and diagnostic services occurs through a multi-day, multi-disciplinary process and includes medical, behavioral, and cognitive assessment. There are currently 25 clinics across the province that provide FASD assessment and diagnosis.6 Preventative services primarily occur through the Parent-Child Assistance Program, which targets high-risk women who are pregnant or post-partum. Lastly, support services (many of which aim to address the secondary disabilities associated with the disorder) include coordination, advocacy, mentoring, outreach, and support groups.7

Secondary Disabilities & FASD Service Networks

When an individual enters the Service Networks for diagnosis, they will be assessed for any secondary disabilities which may be present. The assessment process will examine deficits in education, language, mental health and addictions, sensory issues, financial constraints, employment, homelessness and housing issues, sexual health, health, learning abilities, attention and memory disorders, and

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guardianship.7 Once a FASD diagnosis is given, the clinic will create a management and support plan based upon the secondary disabilities identified, which will be tailored to the unique needs of the individual.

Supports could include housing, employment, educational, parenting and lifestyle counseling, and/or linking the individual to other community-based supports.8 The clinic may also make referrals to other community partners, which could include mental health services, healthcare, housing and income support, addiction services, employment and educational training, legal support, food bank referrals, respite services, detoxification treatment, classroom management, referrals to FASD support groups, and transportation referrals.9

Objective & Scope

The aim of this report is to estimate the social return on investment (SROI) associated with the Service Networks by estimating the potential impact of the Service Networks on secondary disabilities associated with FASD. The specific secondary disabilities addressed within this report include crime, homelessness, mental health problems, and school disruption (for children) or unemployment (for adults).It is important to understand that the economic analysis is not an assessment of value for money of the program, as the analysis does not consider all economic benefits associated with the Service Networks such as the direct benefit to those experiencing FASD, their caregivers, or any preventative benefits associated with FASD support. Further, this analysis does not consider the benefits that are related to the primary disabilities associated with FASD, which would include general levels of adaptive functioning, school achievements, and verbal or reading comprehension. The required data for a thorough and valid assessment of economic benefit is currently unavailable. Hence, the analysis is an exploratory assessment of the potential impact the Service Networks may have on secondary disabilities using available information and data at the time of this analysis.

Methods

We used a cost benefit analysis (CBA)10 approach to estimate the SROI where the monetary value associated with preventing a secondary disability (e.g. costs of homelessness) are contrasted with the cost of the Service Networks program. We used a societal perspective and a 1-year time horizon for the analysis.

Benefits of the Service Networks (i.e. intervention) were based upon a decision analytic model which compared the costs of two approaches: 1) having the 12 Service Networks across Alberta, and 2) having no Service Networks in place across the province. Benefits included in this study were the reduced numbers of secondary disabilities among people with FASD. The costs included under the two arms of the decision analytic model were those resulting from the secondary disabilities associated with crime, homelessness, mental health problems, and school disruption (for children) or unemployment (for adults).

Any impact the network may have on ameliorating secondary disabilities will result in a reduction in cost (i.e. cost avoidance) providing the basis for estimating the potential SROI. There would be a net positive SROI if the costs in the scenario with the Service Networks are less than that of the scenario without the program.

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1. Study population

The study populations included 1) high-risk people who were referred to the Service Networks for diagnostic services, and 2) high-risk people who were diagnosed outside of the Service Networks but were referred to the Service Network for support services during the 3 years from 2008/9 to 2010/11. Because of the difference in secondary disability outcomes (school disruption or unemployment), children (<18 years old) and adults (≥18 years old) were analyzed separately.

2. Secondary disabilities

The secondary disabilities included in our model were crime, homelessness, mental health problems, and school disruption (for children) or unemployment (for adults). The costs attributed to each secondary disability include:

Crime: any occurrence/trouble with the criminal justice system, including being charged or convicted of a crime. All costs incurred by the criminal justice system were included in analysis (for example correctional institutions, publically funded legal costs, community supervision, and police services), and any private costs or victimization costs were excluded.

Homelessness: any occurrence when an individual accessed emergency shelters, independent living shelters, temporary emergency housing, and other shelter options. The cost of housing and shelter were included in analysis, with any costs relating to support or medical care excluded.

Mental health: any occurrence utilizing health care services to treat mental health problems. The costs included in analysis were the direct costs to the healthcare system, including mental health hospitalization and community expenditures. Any out of pocket expenses were excluded from analysis (for example the cost of medications).

School disruption: any occurrence resulting in a suspension or expulsion from school, or any instance when the individual dropped out of school. The direct cost to Alberta Education for the education of students with FASD was included in the analysis. Any out-of-pocket costs, health, and social support costs were excluded from analysis.

Unemployment: any occurrence when an individual is not employed. The costs associated with lost productivity, based upon average Alberta wages for 2011, were included in analysis.

3. Model

The model for high-risk adults is shown in Figure 2.

Within the model, high-risk individuals begin at diagnosis where they can either be 1) referred for diagnosis and receive support services offered by the Service Networks, or 2) not be referred for diagnosis and not receive support services offered by the Service Networks. In the scenario without the Service Networks, individuals with FASD are at increased risk for unemployment, crime, mental health problems, and homelessness. In the scenario with the Service Networks, individuals with FASD who stay in the Service Networks may be at a decreased risk for unemployment, crime, mental health problems, and homelessness compared to the situation where they were not receiving Service Networks services. Individuals who leave the Service Networks are at the same risk for secondary disabilities as the scenario

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where the Service Networks is not present. The model for children is identical to the adult model with the exception that unemployment is replaced with school disruption.

Figure 2: Decision analytic model for high-risk adults (for high-risk children, unemployment is replaced by school disrupted)

People who were diagnosed with FASD outside of the Service Networks (for example, diagnosis occurred in another province or in an independent clinic) and were referred to the Service Networks for support services begin the model at the FASD state and then follows a similar algorithm as the high-risk individuals. The model treats a person who had several secondary disabilities as several different people with each of the individual disabilities. That is, secondary disabilities were treated independently.

4. Model inputs

Inputs for the analysis are shown in Table 2. The study populations and costs of the Service Networks were retrieved or estimated from actual data from the Alberta FASD-CMC. Probabilities of secondary disabilities were retrieved from a systematic review of the literature (see Appendix A for details). Note that multi-year probabilities were converted to a 1-year probability by using an exponential function11 when appropriate. Probabilities that reflect a secondary disability occurring at least once in an individual’s lifetime were treated as yearly probability in the analysis. For example, the life-time probability of crime among people with FASD is estimated at 60% by Streissguth et al.,2 which was treated as a 1-year probability of crime among people with FASD.

Secondary complications

Probabilities of the occurrence of unemployment (79%), school disruption (60%), committed crimes (60%), and mental health problems (94%) were retrieved from studies by Streissguth et al. As the probability of homelessness among FASD was not available, we used probability of the occurrence being homeless among people with mental illness (15%)13 as a proxy. This was deemed acceptable because more than 90% of people with FASD have mental health problems.14 Probability of staying in the Service Networks for women who participate in the PCAP model was used as a proxy for people with FASD. Based

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on the data of the Alberta FASD Services Network, this probability was 97%. Probability of having FASD among high-risk individuals who are referred to the Service Networks for diagnosis was assumed to be 67.5% (60-75%).

Costs

Costs of the secondary disabilities were retrieved from Alberta or Canadian (if Alberta sources were not available) sources. To avoid double counting, the cost of each secondary disability was treated as being mutually exclusive. For example, cost of homelessness was restricted to shelter cost but excludes costs of mental health care and correctional services for homeless people.

Specifically, the shelter cost per homeless person per year was estimated by subtracting the costs of health, social, and criminal services from the total cost of homelessness based on the study on the costs of homelessness in British Columbia by Eberle et al.15

The average wage per person per 2 months in Alberta (retrieved from Alberta Human Services16) was used as the cost of unemployment. This was based on the assumption that the Service Networks could reportedly lead to benefits of people with FASD of an additional 2 months of employment per year compared to no Service Networks.

The cost of mental health problems was restricted to medical costs. We used the incremental cost between a person with and without mental illness reported by Lim et al.17 We used a sample weight to estimate the incremental cost per person with mental illness (see Appendix B for details).

The cost of school disruption was restricted to the education system costs and was retrieved from a study on cost of FASD to Alberta Education by Calder et al.18 Since the cost of crime per person with FASD per year is not available we used the annual cost of criminal justice services per homeless person15 as a proxy.All the costs were converted to 2012 Canadian dollars by the Bank of Canada Inflation Calculator which was based on the Statistics Canada Consumer Price Index and available at http://www.bankofcanada.ca (accessed on August 3, 2012). TreeAge Pro 2009 and Excel 2003 were used for analysis.

Program effectiveness

We performed a systematic search of published and gray literature for the effectiveness of the Service Networks in reducing the numbers of secondary disabilities. However, no studies were identified. Consequently, we estimate the SROI over a specified range (see below). Estimated values for effectiveness were applied equally across the secondary disabilities included in the analysis.

Table 2: Model InputsNames of inputs Means Range Data SourcesProbability of FASD among high-risk individuals who are referred to the Service Networks for diagnosis

67.5% 60-75% Expert opinion (Gail Andrew)

Probability of unemployment among adults with FASD

79% 69-87% Streissguth et al.

Probability of school disruption among children with FASD

60% 54-66% Streissguth et al.

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Probability of crime among FASD 60% 54-66% Streissguth et al.Probability of mental health problems among FASD

94% 91-96% Streissguth et al.; Famy et al.19

Probability of homelessness among FASD*

15% 14-16% Folsom et al. 13

Probability of staying in the Service Networks**

97% 94-99% AB FASD Services Network. Evaluation report 20129

Effectiveness of Service Networks on unemployment

60% 40-80% Assumption

Effectiveness of Service Networks on crime

60% 40-80% Assumption

Effectiveness of Service Networks on mental health problems

60% 40-80% Assumption

Effectiveness of Service Networks on homelessness

60% 40-80% Assumption

Productivity cost of unemployment*** $7,152 $5,364-$8,940 Alberta Human Services 201116

Shelter cost of homelessness $14,398 $7,854-$20,943 Eberle et al.15

Educational cost of school disruption $8,424 $6,318-$10,530 Calder et al. 18

Criminal justice cost of crime**** $14,935 $11,201-$18,669

Eberle et al.15

Medical cost of mental health problems $1,634 $1,225-$2,042 Lim et al.17

* probability of homelessness among mental illness.** probability of staying in the Service Networks among PCAP women*** average wage per person per 2 months**** cost of crime among homeless people

5. Sensitivity analysis

A sensitivity analysis was performed to assess how changes in input parameters changed the estimates of SROI. For input probabilities, they were varied within the 95% confident intervals reported in the original study. For cost inputs, they were varied by ±25% (except the shelter cost of homelessness which was estimated based on the range of total cost reported in the original study). The effectiveness of the Service Networks in reducing the numbers of mental health problems, crime, homelessness, and school disruption or unemployment among people with FASD were varied between 40% and 80%. Also, a threshold analysis was performed to estimate a threshold of the effectiveness at which the Service Networks became cost-saving.

Results

1. Study populations

The number of high-risk individuals referred to the Service Networks for diagnosis by age groups and years are presented in Table 1. In total, there were 1174 high-risk individuals receiving diagnostic services over 1 year from the Service Networks. Of this, children accounted for 72.7% (853 individuals).

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Table 1: Number of high-risk individuals referred to the Network for diagnosisYears All ages Adults (18+) Children (<18)2010/11 562 154 4082009/10 413 103 3102008/9 199 64 135Total 1174 321 853

Source: Alberta FASD-CMC

The number of individuals who were diagnosed with FASD outside the Service Networks and who were referred to the Service Networks for support services was estimated at 482. Of this, children accounted for 47% (228 individuals) and adults 53% (254 individuals) (see Appendix C for details).

2. Number of people with FASD served by the Network per year

Total number of people with FASD served by the Service Networks from 2008/9 to 2010/11 was estimated at 1274, of which the number of children and adults were 804 and 471, respectively.

Table 2: Number of people with FASD served by the NetworkAdults Children Total*

FASD diagnoses by the Network 217 576 792FASD diagnoses outside the Network 254 228 482

Total FASD served by the Network 471 804 1274*Total may not be equal to the sum due to rounding

3. Number and costs of secondary disabilities with no Network

The total numbers and costs of secondary disabilities estimated without a Service Networks is presented in Table 3. These numbers were generated by the probabilities presented in Table 2, based upon our population of 471 adults and 804 children served within the Service Networks (as discussed in Table 2). For example, with the probability that 79% of adults will be unemployed (taken from Table 1), we can predict that 372 adults would experience unemployment without the services of the Service Networks.With no Service Networks in place, we can expect 372 adults will be unemployed, 282 will engage in crime, 442 will experience mental health problems, and 71 will be homeless. Likewise, we can expect 482 children will experience school disruption, 482 will engage in crime, 756 will experience mental health problems, and 121 will be homeless. This equates to a total cost of $8.62 million for adults and $14.24 million for children.

Table 3: Numbers and costs of secondary disabilities if the Network is not presentNumbers Adults Children All ages

Number of unemployment occurrences 372 372

Number of occurrences of school disruption 482 482

Number of occurrences of a committed crime 282 482 765

Number of mental health problems 442 756 1198

Number of occurrences of homelessness 71 121 191

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Costs (millions of dollars)

Cost of unemployment occurrences $ 2.66 $ 2.66

Cost of school disruption occurrences $ 4.06 $ 4.06

Cost of committed crime occurrences $ 4.22 $ 7.20 $ 11.42

Cost of mental health problems $ 0.72 $ 1.23 $ 1.96

Cost of homelessness occurrences $ 1.02 $ 1.74 $ 2.75

Total $ 8.62 $ 14.24 $ 22.85

4. Benefits of the Network: number and costs of secondary disabilities reduced by the Network

Table 4 demonstrates the potential impact of the Service Networks in terms of reductions in secondary disabilities and the costs associated with secondary disabilities. Corresponding to the effectiveness rate between 40% and 80%, the Service Networks reduced between 187 to 281 occurrences of school disruption, 144 to 289 occurrences of unemployment, 297 to 593 occurrences of committed crime, 456 to 930 mental health problems, and 74 to148 occurrences of homelessness. Hence, the total monetary benefits range from $8.87 to $17.73 million per year, limited to the secondary disabilities included in this study.

Table 4: Benefits of the Service Networks by effectiveness levels and age groupsChildren Adults All ages

Effectiveness levels 40% 60% 80% 40% 60% 80% 40% 60% 80%Reduced numbers

Number of unemployment occurrences

144 216 289 144 216 289

Number of occurrences of school disruption

187 281 374 187 281 374

Number of occurrences of a committed crime

187 281 374 110 164 219 297 445 593

Number of mental health problems

293 440 586 172 257 343 465 697 930

Number of occurrences of homelessness

47 70 94 27 41 55 74 111 148

Reduced costs (millions of dollars)Cost of unemployment

$1.03 $1.55 $2.06 $1.03 $1.55 $2.06

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occurrencesCost of school disruption occurrences

$1.58 $2.36 $3.15 $1.58 $2.36 $3.15

Cost of committed crime occurrences

$2.79 $4.19 $5.59 $1.64 $2.45 $3.27 $4.43 $6.65 $8.86

Cost of mental health problems

$0.48 $0.72 $0.96 $0.28 $0.42 $0.56 $0.76 $1.14 $1.52

Cost of homelessness occurrences

$0.67 $1.01 $1.35 $0.39 $0.59 $0.79 $1.07 $1.60 $2.14

Total cost $5.52 $8.29 $11.05 $3.34 $5.01 $6.69 $8.87 $13.30 $17.73

5. Cost of the Network

We used the actual spending as the cost of the Service Networks. The annually actual spending of the Service Networks is $8.65 million (personal communication with the Senior Manager of FASD Initiatives/Children’s Mental Health at Alberta Child and Youth Services). Of this, diagnostic services accounted for 19%, support services 40%, prevention services 23%, and operational 18%. After equally allocating the operational costs to the other types of services and excluding the costs for prevention, the costs for diagnosis and for support services were estimated to be $2.12 million and $4.00 million, respectively, totaling $6.12 million per year (Table 5).

Table 5: Annual cost of the Network (millions of dollars)

Types of services DistributionExpenditures/ Costs

Cost after distributing the operational cost to other types of services

Operational 18% $ 1.54 Support 40% $ 3.48 $ 4.00 Diagnosis 19% $ 1.61 $ 2.12 PCAP 23% $ 2.02 $ 2.53 Total* 100% $ 8.65 $ 8.65

*Total may not be equal to the sum due to rounding; Source: personal communication with the Senior Manager of FASD Initiatives/Children’s Mental Health at Alberta Child and Youth Services.

6. Net benefits

In summary, network benefits can range from $8.87 million to $17.73 million, corresponding to the level of program effectiveness 40% to 80%. Program costs were $6.12 million. Comparisons between the costs and the benefits found the social return would be from $1.5 to $2.9 for every $1 invested in the Service Networks. The threshold analysis showed the Service Networks would be cost-saving (a positive return on investment) if it could reduce the numbers of secondary disabilities by 28% or more (Table 6).

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Table 6: Net benefits (millions of dollars) and benefit-to-cost ratios of the Network by effectiveness levels*

Effectiveness levels

28% 40% 60% 80%

Benefits (B) 6.12 $8.87 $13.30 $17.73

Costs (C) $6.12 $6.12 $6.12 $6.12

Net (B-C) $ 0.00 $ 2.75 $ 7.18 $ 11.61

Ratio (B:C) 1.0 1.45 2.17 2.90

* Does not consider all economic benefits associated with the Service Networks, for example primary benefits to FASD affected individuals, preventative benefits, or benefits to caregivers

7. Sensitivity analysis results

The results of sensitivity analysis are shown in Table 7. The total cost of the secondary disabilities varied between $20 to $26 million if the Service Networks was not present. Variations of the benefits of the Service Networks were between $8 to $10, $12 to $15, and $16 to $20 million at the effectiveness level 40%, 60%, and 80%, respectively. The effectiveness level at which the Service Networks became cost-saving (in other words, at which the Service Networks could pay for itself or the Service Networks had a positive return on investment) varied between 25% and 32%. The most sensitive variable was the cost of crime, followed by the cost of homelessness (see Appendix D for more details).

Table 7. Variations of the costs, benefits (millions of dollars) and the threshold (%) per yearLower Higher

Total cost if No Network $20.00 $25.71

Total benefits of the Network

Effectiveness = 40% $ 7.76 $ 9.98

Effectiveness = 60% $11.64 $14.96

Effectiveness = 80% $15.52 $19.95

Effectiveness level at which the Network became cost-saving

25% 32%

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Discussion

The report provided an exploratory economic assessment of the potential impact of the Service Networks focusing on secondary disabilities associated with FASD. Based on data available at the time of the analysis and an effectiveness rate between 40% and 80%, we would expect to see a reduction between 187 to 281 in occurrences of school disruption, 144 to 289 in occurrences of unemployment, 297 to 593 in occurrences of committed crime, 456 to 930 in mental health problems, and 74 to 148 in the occurrences of homelessness. The total gross monetary benefits ranged from $8.87 to $17.73 million per year with an annual program costs estimated at approximately $6.12 million. This means that even at the lowest estimate of effectiveness (40%), the Network produces net monetary benefits. The overall social return of the Network is $1.5 to $2.9 for every $1 invested. The effectiveness level at which the Network became cost-saving (a positive return on investment) was 25% to 32%.

It is important to understand that the economic analysis does not consider all economic benefits associated with the Service Networks. The analysis excludes the primary benefit to those experiencing FASD (for example, improvement to general levels of adaptive functioning), the benefits to FASD caregivers, and the many preventative benefits associated with FASD support.

If an economic evaluation of the program were to be conducted in the future, the analysis must include all benefits resulting from the program. What the current results do show, however, is that the economic and social burden associated with secondary disabilities is significant and there is an economic opportunity to reduce the resource burden on already constrained social resources and programs. Hence, programs that are effective at not only ameliorating secondary disabilities but are also effective in prevention are likely to be cost effective. However, until data measuring the effectiveness of these programs are collected and made available, the full economic value of these programs cannot be demonstrated.

LimitationsThere are several limitations that need to be considered before interpreting the results.

1. Limited data was available to conduct the economic analysis. The estimates of the effectiveness of the Service Networks varied from 40% to 80%; however the actual effectiveness rate is not known. No data was available to inform the effectiveness of the Service Networks on secondary disabilities.

2. The analysis focuses on four secondary disabilities and does not account for the benefits from ameliorating other disabilities.

3. Analysis does not account for factors such as having reliable differential diagnosis, access to service, compliance with program, baseline health status and other influencers.

4. The results should not be interpreted independent from the other research being conducted to examine the FASD 10 Year Strategic Plan Outcomes. It is important that the results be assessed in light of the other research findings and from the broader program context.

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RecommendationsThe findings of this evaluation give rise to the following recommendations.

Recommendation 1: Assess the full range of benefits of the Network

Due to a lack of data this evaluation assessed only the impact of the Service Networks to secondary disabilities, which excluded the benefits associated with the many preventative initiatives occurring within the Service Networks. To truly understand value for money, it is recommended that future evaluations include the full range of benefits associated with the Service Networks.

Recommendation 2: Define what data will be routinely collectedFor future economic evaluations we have defined the following data which should be routinely collected:

Longitudinal data which follows individuals as they receive services within and outside of the Service Networks and should be linkable with existing administrative data sets.

Data that reports on the rates of secondary disabilities such as crime, employment, homelessness and mental health when receiving and not receiving program services.

Data to clearly identify and report on the number of individuals, caregivers, and family members who access services from the Service Networks.

Data to specify the type and quantity of services participants within the Service Networks are receiving.

Data tracking the time participants spend in the Service Networks and the time they are not accessing services from the Service Networks.

Recommendation 3: Define how the capacity needed to collect data will be enhanced

Provide resources to improve the capacity of Service Networks to collect and monitor data. Such capacity could include a systemic means of data collection through a universal system across all 12 Service Networks, or further training into the importance of data collection for staff working with the Service Networks.

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References

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