Service Coordination: Are We There Yet?

Gloria Harbin, Ph.D.Kathleen Whitbread, Ph.D.

University of Connecticut A.J. Pappanikou Center For Developmental Disabilities

263 Farmington Avenue, MC6222Farmington, CT 06030

USAPhone: (860) 679-1500

Fax: (860) 679-1571whitbread@nso1.uchc.edu

Website: www.uconnucedd.org

Research & Training Center in Service Coordination

CFDA # 84.324L

This is a Collaborative Project

Four primary sites:

Mary Beth Bruder, Ph.D., University of Connecticut

Gloria Harbin, Ph.D., University of North Carolina-Chapel Hill

Michael Conn-Powers, Indiana University

Sara Miranda, Federation for Children with Special Needs, Massachusetts

Additional research being conducted by:

Richard Roberts, Ph.D., Utah State University

Carl Dunst, Ph.D., Orelena Hawks Puckett Institute

Principles

Collaborative model of integrated activities.

Families are an integral component of our project.

Stakeholders contribute to all phases of the center activities.

Use of a Participatory Research Model.

Center Framework

Family

Service Provision

System Administration

Status

Outcomes

Recommended Practices

Measurement

Training Model

Dissemination

Surveys Focus Groups

DelphiTechnique

OutcomeMeasurement

Validation Studies

I.

II.

III.

IV.

V.

VI.

Objective 1

HOW WE DID IT:

Described current models of service coordination

WHAT WE DID:

Series of Surveys

Survey Design

Part C Survey

Examine current models of SC Roles of Parents SC Policy Monitoring and evaluation SC Financing

49 closed-ended questions

Mail, e-mail, faxes

Curricula Survey

Status of Part C SC training-models-curricula-follow-up

5 open-ended questions

Telephone interview, emails, faxes

Parent Leader Survey

Explore families’ perceptions of their statewide system of SC.-system entry-evaluation & IFSP-service Provision-transition-training-collaboration

29 closed-ended items22 open-ended items for short responses

Mail

Parent ICC Survey

Understanding of Federal regulations to SC. Models of SC Degree ICC addressed SC Outcomes of quality SC

23 closed and open-ended questions

Telephone interviews

Survey Sampling

Part C Survey

All Part C Coordinators in 57 States and Territories

Curricula Survey

Training Personnel from 55 States and Territories

Parent Leader Survey

319 Parent Leaders in 50 States and DC

Parent ICC Survey

Parent Leaders in each of 50 States who serve on ICC boards

Survey Findings

Part C SurveyN=57

39 Part C Coordinators reported lack of uniformity in provision of service coordination

36 states used a regional approach

Service Coordinator caseloads ranged from 9-70 with a mean of 38

17 states were changing service coordination models

Curricula SurveyN=55

Average length of training in 37 states = 2-3 days

27 states mandated service coordination training

26 states were in the process of developing service coordination training

Parent Leader SurveyN=319

83 families did not learn who their service coordinator was until after the IFSP

80 noted SC is ineffective in locating advocacy services

121 parents believed service coordination was very effective in developing IFSPs that were responsive to child and family needs

Parent ICC SurveyN=50

30 ICC parent representatives considered themselves familiar with federal regulations

32 parent representatives said their ICCs were familiar with federal regulations

24 were unsure if the state had specific service coordination models

System Infrastructure:

WHAT IS NEEDED TO SUPPORT EFFECTIVE SERVICE COORDINATION

Case Study States

Dedicated and Independent

Blended with Intervention – LA

Blended with Intervention – IA

What Approaches are Used?

Dedicated - and Independent Dedicated - NOT Independent Blended with Intervention

Lead Agency (LA) Blended with Intervention

Interagency (IA) Variable(Harbin, Bruder, Reynolds, Mazzarella, Gabbard, & Staff, 2002.)

Which Model is Best?

FINDINGS:

Differences in nature of some system components

SYSTEMINFRASTRUCTURE

SERVICECOORDINATION

PRACTICESCHILD AND FAMILY

OUTCOMES

Which Model is Best?

Not a useful question

Multiple factors – not just the model were associated with positive outcomes

Approaches and their Assumptions

ANALYSIS REVEALED

Assumptions not always realized

Multiple factors could influence whether the original assumptions were realized

Dedicated Approach

ASSUMPTIONS Can spend more time on S.C. Specialist Needed Offer Broader Array More Choice for Families

Dedicated Approach

WHAT CAN GO WRONG? Case load Too large S.C. not knowledgeable about services and

resources Parents uninformed S.C. not knowledgeable about disabilities

Blended Approach

ASSUMPTIONS Most knowledgeable about child and family

needs More effectively communicate with other

providers Family more likely to reveal needs

Blended Approach

WHAT CAN GO WRONG? Knowledge of needs related to own expertise Communication doesn’t occur (no time, no

mechanism) Service provider doesn’t elicit needs

Variable Approach

ASSUMPTIONS No model is best Locals know best Individualization of approach is more

likely to meet needs

Variable Approach

WHAT CAN GO WRONG? Pragmatic decision, not data-based What locals “think is best” may not be Lack of consistency confuses parents

Influential Factors

Empowering Relationship Case Load Use of Family Support Approach

Parent Choice Array of Resources

Breadth of Service System Interagency Linkages

Influential Factors

Integration of ServicesTransdisciplinaryRoutines-Based Integrated Therapies IFSPs With All Needs and Services Interagency Training

Mechanisms to link needs to resources

Influential Factors

Learning Opportunities in Natural Settings Identification of New Needs

Frequency of ContactCase Load Interagency Linkages

Influential Factors

Knowledgeable PersonnelDiverse disabilities and conditionsResourcesCapacity building

Objective 2

WHAT WE DID:

We determined outcomes attributed to effective service coordination across

stakeholders

HOW WE DID IT:

Focus Groups, Delphi Surveys, National Surveys,

(Family and Service Coordinator Interviews and IFSP Review)

Outcome Focus Group Design

Four Focal States

Connecticut, Indiana, North Carolina, Massachusetts

Focused Conversation Workshop Method

Object LevelReflective LevelInterpretive LevelDecisional Level

“If service coordination was of the highest quality for children, families, and systems how would you know it?”

Set the ContextBrainstormCategorizeName CategoriesEvaluate the Work

Institute of Cultural Affairs

Outcome Focus Groups

Sampling Findings

47 Focus groups consisting of 397 participants in 6 stakeholder groups

ParentsService ProvidersService CoordinatorsProgram AdministratorsPhysiciansChildcare Providers

250 outcomes of high quality service coordination

Used to develop the Delphi survey instruments

Delphi Sampling

Program Admin.

Service

Provider

(Indiana)

Service

Coord.

Childcare Provider

Family Physician

86 22 144 54 80 9

Total of 395 surveys were distributed

Outcome Delphi Design

Delphi SurveysN=395 in 2 rounds

Round I1. Outcome lists for each stakeholder group coded by state and

stakeholder group.2. Outcomes across stakeholders within states sent to focus

group participants in each of 4 states.3. Participants asked to rate Outcomes on a 5 point scale: “not

at all desirable”, “a little desirable”, “somewhat desirable”, “very desirable” and “strongly desirable”.

Round I Findings Retained outcomes that >55% rated as “extremely

desirable”.

250 Outcomes reduced to 75.

Outcome Delphi Design

Round II Same stakeholders sent list of Outcomes generated by their

stakeholder group across states (e.g. all parents, all service coordinators) Same five-point scale as Round I

Round II Findings Retained outcomes that >75% rated as “extremely

desirable”

Independent raters eliminated redundant items

Yielded 10 outcomes

Reduced to 7

Delphi Outcomes

1. Children and families receive appropriate supports and services that meet their individual needs

2. Children are healthy

3. Children’s development is enhanced

4. Children have successful transitions

5. Families are involved in decision making

6. Families are informed about resources and services

7. People work together as a team

National Outcomes Survey

Parent/Practitioner SurveysParent/Practitioner Design Parent Practitioner Findings

Identified outcomes of:

-Natural Environments

-Service Coordination

-Early Intervention

Parent Practitioner Sampling

879 EI program practitioners and directors and parents of children with disabilities in 48 states

-519 Program practitioners and directors

-360 Parents

Five Outcomes were identified asprimarily desired benefits of service

coordination -System Coordination -Information and referral -Family support and resources -Family-centered practices -Teaming

Two outcomes were valuedOutcomes of all three services:

-Family satisfaction -Improved quality of life

Objective 3

WHAT WE DID:

We determined practices that lead to high quality Service Coordination

HOW WE DID IT:

Focus Groups, Delphi Surveys, National Surveys, (Family and Service Coordinator Interviews and

IFSP Review)

Practice Focus Group Design

Four Focal States

Connecticut, Indiana, North Carolina, Massachusetts

Large and Small Group Activities Introduction to Service Coordination Discussion of the tool kit available to Service Coordinators Discussion of practices that would lead to quality service coordination

Facilitation Guide“What do service coordinators have to do in order to reach the best

outcomes for children and families?”

Workshop Method

Practice Focus Groups

Sampling Findings

39 Focus groups consisting of participants in 4 stakeholder groups

Parents Service ProvidersService CoordinatorsProgram Administrators

2000+ practices that lead to outcomes of high quality service coordination

Used to develop the Delphi survey instruments

Delphi Practice Sampling

112 PTIs distributed to 12 families each

2688 surveys distributed to families

Total of 4730 surveys were distributed nationally

Part C Coordinators50 states + 3 territories

106 total surveys

Program Administrators8 per state

848 total surveys

Service Coordinators8 per state

848 total surveys

Service Providers8 per state

240 total surveys

Practice Delphi Design and Findings

Delphi I Design

1. Practice lists for each stakeholder group coded by state and stakeholder group.

2. Included practices and outcome statements from both sets of focus groups.

3. Match practices to outcomes on their stakeholder survey.

Delphi I Findings

Frequencies of practices calculated for each outcome statement.

Development of National Delphi Survey.

Practice Delphi Design and Findings

Delphi II Design

1. List of practices that support each of the outcome statements. 2. National sample of stakeholders (Part C Coordinators, Program

Administrators, Service Coordinators, Service Providers, Families) completed two practice surveys.

Delphi II Findings

Practices that lead to the outcomes.

Retained practices that >85% rated as “agreed” or “strongly agreed”.

Yielded 142 practices.

Coded into 12 themes.

Delphi Practice Themes

1. Providing information

2. Ensuring family understanding

3. Being responsive to families

4. Developing IFSPs

5. Monitoring progress

6. Ensuring family satisfaction

7. Promoting child development

8. Addressing healthcare and safety issues

9. Completing administrative responsibilities

10. Planning for transitions

11. Collaborating with community organizations

12. Engaging in professional development activities

National Practices Survey

Family SurveysFamily Survey Design:

Identified Experiences with:Early InterventionNatural EnvironmentService Coordination

Family Survey Findings:

Little or no attention is paid to non-EI services provided by EI programs

Transition planning is not reported frequently by families.

National Family Sampling:

358 parents of children with disabilities in 45 states

SCs engage in discussion of EI services but engage in considerable less action oriented practices.

Very little attention is paid to child development and learning.

Objective 4

HOW WE DID IT:

Measured outcomes and practicesof effective Service Coordination

WHAT WE DID:

Interviews with families, families’service coordinators and IFSP review

Interview Design

Four Focal States

Connecticut, Indiana, North Carolina, Massachusetts

Additional States

Arizona, Utah, Washington State

Interview Protocol

Semi-structured questions

Probes

Interview Form

Interview Sampling

Connecticut, Indiana, North Carolina, Massachusetts

IFSPsN=80

FamiliesN=80

Service CoordinatorsN=80

Ethnicity

Child’s age

Child’s level of functioning

Family location

Socio economic status

Full or Part-time employment

Caseloads

Years experience

Amount of training

Interview Sampling

Washington, Arizona, Utah

IFSPsN=30

FamiliesN=30

Service CoordinatorsN=30

EthnicityChild’s ageChild’s level of functioningFamily locationSocio economic statusESLMaternal age less than 17TANFTitle VTANF & Title V

Full or Part-time employmentCaseloadsYears experienceAmount of training

Family Demographics

Location Frequency Percent

Urban 37 37.8

Suburban 36 36.7

Rural 25 25.5

Ethnicity Frequency Percent

Black 22 22.4

White 49 50.0

Latino 13 13.3

Other 14 14.3

(N=98)

Family Demographics

Income Frequency Percent

Low 39 39.8

Not low 59 60.2

Child’s Age Frequency Percent

0-1 24 24.5

1-2 32 32.7

2-3 42 42.8

Needs Frequency Percent

Mild 44 44.9

Moderate 31 31.6

Complex 23 23.5

Service Coordinator Demographics

Employment Frequency Percent

Part time 28 36.8

Full time 48 63.2

Experience (years) Frequency Percent

0-1 12 15.8

1.1-5 36 47.4

5.1-10 21 27.6

10.1-15 4 5.3

15.1-20 2 2.6

20.1+ 1 1.3

(N=76)

Interview Findings

Identified outcomes important to families.

Identified who assisted the family in achieving the outcomes.

Learned how service coordination helped achieve the outcomes.

Identified how long it took to achieve the outcome.

Outcome Methodology

Independent sort of family and SC outcomes into themed categories.

Collapsed similar themes resulting in 14 family and 13 SC outcome themes. Frequencies and percentages were calculated for each.

Second sort of outcomes into themed categories. Frequencies and percentages were calculated for each.

Comparison of interview, Delphi, and survey outcomes yielding final 8 outcomes.

Interview Outcomes

• Children will have successful transitions.

• Children and Families receive early intervention services that are individualized, coordinated and effective.

• Families make informed decisions about services and opportunities in the community for their children with a disability.

• Families acquire and/or maintain a quality of life that enhances their well-being.

• Families are self-sufficient.

• Families are knowledgeable of their child’s disability.

• Families are satisfied.

• Children’s development is enhanced.

• Children are safe and healthy.

Interview Outcomes

FAMILY CHILD SYSTEM

Families are knowledgeable of their child’s unique needs

Children are safe and healthy Children and families receive quality early intervention services that are coordinated, effective and individualized to their needs

Families have tools, knowledge and supports to access resources to address their individual needs

Children’s development is enhanced Transitions are successful

Families acquire and/or maintain a quality of life that enhances their well-being

Families make informed decisions about services and opportunities in the community for their children

Interview Outcomes: Families vs. Service Coordinators

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100120140160180

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Qualit

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life

Sufficie

nt

Know d

isabi

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Develo

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t

Safe/

heal

thy

Tran

sitio

ns

Recre

atio

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rvice

s

Family Interviews: 98

Service Coordinators Interviews: 98

“Who helped make this happen?”

0

5

10

15

20

25

30

35

40

Family ServiceCoordinator

ServiceProvider

Doctor Other

Family Interviews: 98

Service Coordinators Interviews: 98

Practice Methodology

Independent sort of family and SC practices into themed categories.

Collapsed similar themes resulting in 15 family practice themes and 14 SC practice themes. Frequencies and percentages were calculated for each.

Consensus coding and reliability checks were conducted during the second sort.

Themed categories were compared to practice themes from the Delphi study and reduced to 12 interview practice themes.

Interview Practice Themes

1. Providing families with information

2. Assisting families with obtaining formal and informal supports

3. Coordinating services

4. Monitoring the provision of services

5. Providing support and encouragement

6. Giving suggestions to enhance child development

7. Completing administrative duties

8. Providing direct service to child

9. Facilitating transition process

10. Facilitating communication among team members

11. Developing and reviewing IFSPs

12. Ensuring family understanding of child development

Interview Practices: Families vs. Service Coordinators

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N=98

IFSP Methodology

•98 IFSP’s were available

•68% of IFSP’s had missing data

•IFSP’s were reviewed for-Number of agencies involved, -Team members -Types of services -Location of services-Outcomes

IFSP Data Graph – Agencies used

0

10

20

30

40

50

60

70

1 2 3 4 5 6

Number of Agencies

Num

ber

of

Fam

ilies

20

1016

8

62

IFSP Data Graph – Location of service

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Site

Day C

are

Home

Other

Missin

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form

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8.9% 2.32% 3.86% 7.34%

67.57%

0.77% 9.65%

Convergence of Data Sources

LOGIC MODEL

State Strategic Planning

RTC

Colorado Ohio

North Carolina Florida

Strategic Planning Process

Vision

Mission

Objectives

Resources

Action Plan

Evaluation Plan

For More Information

•UCEDD Web Site:

http://www.uconnced.org/Data ReportsNewslettersProject Updates

•Articles

•Trainings