Opening Doors – improving access to high quality ... Web viewThe Opening Doors program ran from September 2015 to February 2017. ... the latest NDIS report to the Council of

Opening Doors – improving access to high quality disability services for Aboriginal and Torres Strait Islanders in the ACT through the NDISPotential to help break the cycle of disadvantage

Final Report

Bold ideas | Engaging people | Influential, enduring solutions

ACT Community Services Directorate

3 March 2017

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ACT Community Services DirectorateOpening Doors – improving access to high quality disability services for Aboriginal and Torres Strait Islanders in the ACT through the NDIS | 3 March 2017

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© Nous Group


Contents

Executive summary.......................................................................................................................................4

1 The Opening Doors Program aimed to help build high quality, culturally sensitive NDIS services for Aboriginal and Torres Strait Islander clients......................................................................................8

2 Understanding the needs and experiences of Aboriginal and Torres Strait Islanders in relation to the NDIS in the ACT..........................................................................................................................10

2.1 There are indications of unmet need for disability services for Aboriginal and Torres Strait Islander people in the ACT....................................................................................................10

2.2 Getting an NDIS plan has been difficult for many Aboriginal and Torres Strait Islander people...................................................................................................................................11

2.3 There are barriers to using NDIS plans..................................................................................13

2.4 Once in receipt of services, experiences were mixed...........................................................14

2.5 The NDIS has a negative image to overcome for Aboriginal and Torres Strait Islander people in the ACT..............................................................................................................................15

2.6 There are opportunities to improve the experiences of Aboriginal and Torres Strait Islanders in relation to the NDIS............................................................................................16

3 Supporting existing Aboriginal and Torres Strait Islander community controlled organisations and businesses to become registered service providers........................................................................18

3.1 Opening Doors encountered a number of barriers to involvement of local community controlled services................................................................................................................18

3.2 Support for small Aboriginal and Torres Strait Islander businesses to become registered service providers...................................................................................................................20

4 Developing and supporting cultural sensitivity in mainstream NDIS service providers...................21

4.1 The Opening Doors program provided a tailored suite of organisational supports to interested organisations........................................................................................................21

4.2 The program developed a cultural sensitivity resource to educate frontline staff on creating good relationships with Aboriginal and Torres Strait Islander clients...................................23

4.3 There is unmet demand for Aboriginal and Torres Strait Islander workers..........................23

5 Strategic issues for the Commonwealth Government to consider..................................................25

5.1 Response to the under-utilisation of Plans...........................................................................25

5.2 The pivotal role of supports coordination for Aboriginal and Torres Strait Islander people 25

5.3 The need for non-internet based information dissemination strategies..............................26

5.4 The NDIA marketing needs to acknowledge fears that government may intervene in other ways.......................................................................................................................................26

5.5 The importance of the community controlled sector becoming involved in the NDIS.........27

5.6 Improving the capacity and capability of the Aboriginal and Torres Strait Islander workforce is important...........................................................................................................................28

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Appendix A De-identified case studies of participants and unsuccessful applicants...............................29

Mary and Tom – hard, but worth it.......................................................................................29

Fran and Jack – after some false starts it is now good for Jack.............................................30

Margaret and Ben – getting better all the time.....................................................................31

Alice and Taylor – having missed an opportunity is worse than no opportunity at all.........32

Robert, Jean and Michael – money for nothing....................................................................32

Sharon and Fiona – a life changer.........................................................................................33

Xanthe and Jasmin – NDIS has made life harder...................................................................34

Appendix B Performance indicators.........................................................................................................35

Appendix C Frontline staff and organisation management cultural sensitivity resource.........................38

Appendix D Mainstream service provider promotional material.............................................................39

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Executive summaryThe Opening Doors program ran from September 2015 to February 2017. Its aim was to improve access to high quality, culturally sensitive disability services for Aboriginal and Torres Strait Islander people through the NDIS. It was funded by the Commonwealth Government’s National Disability Insurance Scheme (NDIS) Sector Development Fund (SDF) through the Community Services Directorate of the ACT Government, and implemented by Nous Group. Nous has been guided by a Steering Committee with representation from government, the local Aboriginal community controlled sector, the Mental Health Community Coalition, First People’s Disability Network and carers.

Over the period of the Opening Doors program, Nous has gained an in-depth understanding of the nature and extent of need for culturally sensitive disability services in the ACT, reinforcing the need for special consideration for this client group. Building on this understanding, Nous worked with Aboriginal community controlled organisations and businesses and selected mainstream organisations to support them to provide services that are culturally sensitive and accessible to Aboriginal and Torres Strait Islander clients.

As the ACT was the first jurisdictions to implement the NDIS, there is an opportunity to apply the learnings from the Opening Doors project more broadly across other Australian jurisdictions where the scheme is less mature.

There were three main components of the Opening Doors program

The Opening Doors program worked across three project elements each of which aimed to contribute to the development of services that are more accessible and culturally sensitive for Aboriginal and Torres Strait Islander clients.

Understanding the nature and need for culturally sensitive disability services in the ACT

Throughout the Opening Doors program Nous undertook extensive consultation with NDIS participants and unsuccessful applicants. Nous also spoke with many service provider organisations to understand their perspective on delivering services to Aboriginal and Torres Strait Islander people. From this information gathering and the associated relationships it is clear that the experience of Aboriginal and Torres Strait Islander people with the NDIS has been mixed.

Several major themes that emerged included:

There are some good examples where Aboriginal and Torres Strait Islander clients have been able to access life-changing supports

There is evidence of unmet need for disability supports, particularly for people with psychosocial disability and early intervention services

There is a cultural barrier to participate, arising from a world view which does not define a person as having a ‘disability’ – rather, it is an integral part of that person

There is a negative perception of the NDIS, partially driven by concern that it might be linked to other agencies such as Child Protection as well as the complexity of the scheme

For some (but not all) Aboriginal clients, it is really critical to have an Aboriginal worker, so that they feel comfortable having the worker in their home (others stated a preference for a non-Aboriginal worker, as a privacy issue)

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The application process is long and difficult, and most successful applicants have needed extensive help. Some of this was provided by Gugan Gulwan Aboriginal Corporation, under SDF grant funding

Getting the diagnoses needed to substantiate applications can be expensive. The NDIA could consider providing means tested support, possibly through the LAC or ILC processes

Feedback from Aboriginal and Torres Strait Islander people in the local community, as well as from the NDIA suggest that many plans are under-utilised or not used at all

Lack of access to the internet is a significant barrier for some individuals to getting a plan and utilising it

Insufficient supports coordination hours in NDIS plans can make it difficult to find assistance.

Supporting community controlled Aboriginal organisations and Aboriginal businesses to participate in the NDIS

Aboriginal community controlled organisations such as the Aboriginal Medical Services (AMSs) have a successful track record of providing services to the Aboriginal and Torres Strait Islander population. They are a trusted source of care and provide services that are culturally appropriate for their clients. They are therefore a vital component in the future delivery of high quality, culturally sensitive services through the NDIS.

Throughout the Opening Doors program, Nous worked with Winnunga Nimmityjah Aboriginal Health Service and Gugan Gulwan Youth Aboriginal Corporation to support each of them to consider becoming registered service providers for the NDIS. As at February 2017, Gugan has decided not to register, while Winnunga is still considering the issue.

Both Winnunga and Gugan identified a number of barriers to becoming service providers registered with the NDIS. Both were concerned about the administrative cost of providing these services and the complexity associated with the NDIS. A fee-for-service model has inherent financial and management risks and neither organisation has expressed confidence that they are ready to introduce this model. Both were also concerned that generating funds through providing services funded by the NDIS will be interpreted by funding bodies as ‘double dipping’, which amplifies their cautious approach. Nous believes that significant support is still necessary to overcome this barrier.

Both organisations were also impacted by a negative perception of the NDIS amongst Aboriginal and Torres Strait Islander people more generally.

Opening Doors also provided support to Aboriginal businesses to register as a service provider

Nous also worked extensively with a small Indigenous business to assist them to register as a service provider. As at February 2017, this process is almost complete, and the business has Aboriginal and Torres Strait Islander clients waiting to receive their services. The experience of this business highlighted some major barriers for small Aboriginal owned businesses to register and manage NDIS services. In particular, they needed considerable assistance to find their way through the service provider registration process (some, but not all, of which related to NDIS teething problems) and reliable access to the internet. For small business operations there is a clear need for support to become registered and operational as a business.

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The Program assisted mainstream service providers to understand and respond to the needs of Aboriginal and Torres Strait Islander clients

Nous approached all service providers in the ACT to identify their level of interest in improving their ability to provide culturally appropriate services to Aboriginal and Torres Strait Islander clients. Some twenty-two organisations indicated their interest in participating in the tailored program offered through Opening Doors. Nous selected a group of thirteen mainstream service providers who were provided with assistance to improve the cultural sensitivity of their service offering. Selection was based on the extent of need for the services of each organisation among the Aboriginal and Torres Strait Islander community.

Each of the thirteen providers participated in a series of activities to assist them to develop strategies and activities to overcome identified barriers (some of which will be implemented after the Opening Doors program has completed). These activities included the provision of individual assistance to each of the mainstream providers through subcontracting an Aboriginal consulting firm – Coolamon Advisers – to work with them on the structural approach to creating an organisation that has strong and productive links to the Aboriginal and Torres Strait Islander community, and can thus be delivering culturally sensitive services.

Nous identified that the way mainstream frontline workers interact with Aboriginal and Torres Strait Islander clients is a key to culturally sensitive services. Nous consulted with NDIS participants to identify what assists them to feel comfortable with their service provider, and be able to access the services they need. As a result, the lessons learned have been developed into a Cultural Sensitivity Resource that will be widely distributed by to relevant non-government organisations, the NDIA and ACT government (Appendix C).

Nous also produced a booklet identifying and publicising services that have undertaken work to improve their cultural sensitivity, which was distributed across many sites in Canberra (Appendix D).

Workforce issues proved very difficult to address

Many of the Aboriginal and Torres Strait Islander participants interviewed by Nous placed a high value on having access to Aboriginal workers providing the services needed in their homes. However mainstream service providers reported that they found it difficult to recruit and retain Aboriginal and Torres Strait Islander staff. Nous worked with an Aboriginal and Torres Strait Islander employment service to create linkages with service provider agencies to encourage and facilitate the recruitment of Aboriginal staff. However there is an ongoing need to develop a sustainable approach to recruitment and to support Aboriginal staff to ensure they remain in the workforce specifically in the disability sector, but more widely across the whole community services sector.

There are lessons to be learned from the experiences of the Opening Doors program

In the course of the program, Nous identified a number of strategic issues that have broader applicability across Australia to ensure that Aboriginal and Torres Strait Islander Australians derive maximum benefit from the NDIS. These can be grouped into four broad categories:

Specific modifications to the NDIA approach to improve the experience for Aboriginal and Torres Strait Islander clients

Strategies that offer support for the Aboriginal and Torres Strait Islander community controlled sector and Aboriginal owned businesses to participate in the NDIS as registered service providers

Targeted assistance for mainstream providers

Addressing the unmet demand for Aboriginal and Torres Strait Islander workers.

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Specific modifications to the NDIA approach

Nous has identified a number of ways that the NDIA could improve its accessibility for Aboriginal and Torres Strait Islander clients. These include:

Better marketing of plan coordination and services by the NDIA

Better processes for planners to check their clients know what to do next

Better data from the NDIA to provide regular and timely information on the extent to which plans are being used, where they are being accessed and if they are underspent

A sustained and targeted ‘front door’ to the NDIS for Aboriginal and Torres Strait Islander people. This could include the co-location of Local Area Coordination and NDIS planner resources at Aboriginal organisations.

Support for Aboriginal organisations

Aboriginal community controlled organisations such as the Aboriginal Medical Services (AMSs) have a successful track record of providing services to the Aboriginal and Torres Strait Islander population. They are a trusted source of care and provide services that are culturally appropriate for their clients. They are therefore a vital component in the future delivery of high quality, culturally sensitive services through the NDIS. Should a substantial proportion of this sector choose not to participate, it will significantly diminish the potential contribution of the NDIS to this highly vulnerable and disadvantaged group. Specific strategies are therefore called for to encourage AMSs and equivalent organisations to move into this more risk-prone model of fee for service provision. These include:

Assurance that participation in the NDIS will not jeopardise block funding arrangements

A funded ‘transition phase’ to provide reassurance about the financial risks of embarking on operating a fee for service model

Specific assistance for small Aboriginal owned businesses to navigate the registration processes

Linkages between the NDIA and small business support programs for Aboriginal and Torres Strait Islander businesses

Targeted assistance for Aboriginal and Torres Strait Islander clients

Under the NDIS fee for service approach service providers are not funded for the time needed to build relationships with Aboriginal and Torres Strait Islander clients before effective service delivery can be undertaken. If a positive relationship is not established there is a high probability that the client will withdraw, thus not receiving the services that they need. In recognition of this the NDIA needs to be aware of the high number of supports coordination hours needed for Aboriginal and Torres Strait Islander participants.

Addressing the unmet demand for Aboriginal workers

The Opening Doors program highlighted the importance of Aboriginal and Torres Strait Islander workers in attracting and retaining Aboriginal and Torres Strait Islander clients. It also found that many mainstream organisations struggle to recruit and retain workers of Aboriginal and Torres Strait Islander descent. The whole disability sector is struggling with workforce issues, particularly in the light of the expanding roll out of the NDIS. It is important that the issue of Aboriginal and Torres Strait Islander workforce is specifically included in strategies implemented to address workforce shortages.

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1.The Opening Doors Program aimed to help build high quality, culturally sensitive NDIS services for Aboriginal and Torres Strait Islander clients

The NDIS is a new way of providing support for Australians with a disability, their families and carers. It began in a number of trial sites including the ACT in July 2013, and has begun to be introduced in stages around Australia over three years from 1 July 2016.

The NDIS will provide about 460, 000 Australians under the age of 65 with a permanent and significant disability with the reasonable and necessary supports they need to live an ordinary life. As an insurance scheme, the NDIS takes a lifetime approach and aims to invest in people early to improve their outcomes later in life. The NDIS is intended to help people with a disability to:

access mainstream services and support

access community services and supports

maintain informal support arrangements, and

receive reasonable and necessary funded supports.

People are eligible for the NDIS if they have severe and ongoing disability. This can be physical, intellectual and psycho-social in nature. Children in need of early intervention are required to meet the NDIS’ early intervention requirements.

Originally it was estimated that 5,075 people would be eligible for the NDIS in the ACT. Around September 2016 the target had been reached and the NDIS temporarily stopped accepting new participants. The scheme then re- started admitting participants in the ACT after public concern. 1 A market position statement issued by the NDIS on 15 September 2016 said it is expecting 6,900 participants in the scheme in the ACT.2 At the time of drafting this report Federal and ACT Governments were working to confirm actual and projected active participant numbers and funding arrangements.3

The NDIS began to roll out in the ACT on 1 July 2014. To accommodate the transition, the ACT Government proposed (and the Commonwealth agreed) that the National Disability Insurance Agency (NDIA) would stagger groups to become eligible to apply to the scheme over a period of two years. By 1 July 2016, all people up to the age of 65 were able to receive services through the NDIS, if eligible.

The NDIS was aware of the risks in introducing such a fundamental re-structuring of service provision in a sector where many people have high and complex needs, coupled with extreme vulnerability. In the ACT significant Sector Development Fund (SDF) funding was made available to ensure the transition from the old model of disability service provision to the NDIS would be as smooth as possible, and minimise disadvantage to specific groups. Using the SDF, the ACT NDIS Taskforce commissioned two major programs aiming to improve the transition to the NDIS for the Aboriginal and Torres Strait Islander population in the ACT. The first was a program to

1 For example, see ‘NDIS scheme in ACT reaches full capacity – new participants tuned away’, Rick Morton for The Australian newspaper. 14 October 2016. The Austalian

2 NDIS’ ‘Market Position Statement – Australian Capital Territory with Southern NSW Region’, September 2016. NDIS 3 ‘People with a disability in Canberra left in NDIS limbo as ACT waits for a new deal’, Daniel Burdon for The Canberra Times

newspaper. 17 October 2016. The Canberra Times

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http://www.canberratimes.com.au/act-news/people-with-a-disability-in-canberra-left-in-ndis-limbo-as-act-waits-for-a-new-deal-20161014-gs2hpi.html

https://www.ndis.gov.au/medias/ACT-MPS-PDF-?context=bWFzdGVyfHJvb3R8MjQ5NDIyMHxhcHBsaWNhdGlvbi9wZGZ8aGQ2L2g2OS84Nzk3ODYzMDUxMjk0LnBkZnw5Y2NlY2JjMDNjMDNlNzgwNWFjMzM0NDVhMDIwZTAwM2ExYTU3NTY1MDc4MzZlMDk4MTg3MzI0YzAxNWRiNjRm

http://www.theaustralian.com.au/national-affairs/ndis-scheme-in-act-reaches-full-capacity--new-participants-turned-away/news-story/b778c21066ffab94130df0100983c64c


assist Aboriginal and Torres Strait Islander people to get NDIS plans. Gugan Gulwan (Gugan) Aboriginal Corporation received its first grant in July 2014 to assist Aboriginal and Torres Strait Islander people to know about the NDIS. Subsequently the ACT Government, through the NDIS Taskforce, entered into a larger contract with Gugan from July 2015 to December 2016 to assist people to prepare for and access the NDIS.

The other project was the Opening Doors program.

The Opening Doors programThe ACT Community Services Directorate (CSD) commissioned Nous Group to undertake a body of work to understand and help to improve access to culturally sensitive services through the National Disability Insurance Scheme (NDIS) for Aboriginal and Torres Strait Islander people in the ACT.

The Opening Doors program began in September 2015. It has been guided by a Steering Committee, which met four times. The Steering Committee included representation from First People’s Disability Network, Gugan Gulwan Aboriginal Corporation, the Mental Health Community Coalition, Community Services Directorate (ACT government) and a carer of Aboriginal and Torres Strait Islander descent. The Committee has provided guidance to the project on designing individual steps in the process, ensuring that important issues and elements of the community have been addressed.

The Opening Doors Project comprised three project elements,.Work on these three elements was conducted throughout the project.

1. Understand the nature and extent of the need for culturally sensitive disability services in the ACT: Nous began by consulting widely to understand the experience of Aboriginal and Torres Strait Islander people with disabilities in the ACT. We spoke with clients, carers, service providers, health and education government providers and Aboriginal community controlled organisations. These consultations inform this report. Appendix A contains a selection of de-identified case studies on local Aboriginal people’s experience of the NDIS and disability support services.

2. Support for Aboriginal community controlled organisations to transition (or explore a transition) to deliver NDIS services: Nous provided on-going support to Winnunga Nimmitjyah, Gugan Gulwan and a small Indigenous business to assist their consideration of delivering disability support services through the NDIS, as well as some liaison with Ngunnawal Aboriginal Corporation

3. Support for mainstream disability service providers to improve their service offering for Aboriginal and Torres Strait Islander people: Nous leveraged learnings from the first element of the project to assist mainstream disability service providers to improve their service offering for Aboriginal and Torres Strait Islander people.

The Program reported against a number of performance indicators to ensure it delivered against all aspects of the work. A report on the Performance Indicators is provided at Error: Reference source not found.

The ACT was the first jurisdiction to implement the NDIS. There is an opportunity to apply the learnings from the Opening Doors project more broadly across other Australian jurisdictions where the scheme is less mature. This final report of the Opening Doors Program provides a description of the activities undertaken and issues encountered in each of the three component areas of the program. It then explores strategic issues that will assist in overcoming the current barriers and increase opportunities for Aboriginal and Torres Strait Islander people to receive high quality, culturally sensitive disability services.

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2.Understanding the needs and experiences of Aboriginal and Torres Strait Islanders in relation to the NDIS in the ACT

The Opening Doors Program consulted widely with individuals and organisations to better understand the needs of Aboriginal and Torres Strait Islander people and to gather information on their experiences. A number of case studies have been collated from interviews and these are used throughout this section to provide examples and evidence of the insights gained. The case studies have been de-identified and false names used. They are presented at Appendix A.

In this section we present:

Indications of unmet need for NDIS support among Aboriginal and Torres Strait Islander people

The experiences of Aboriginal and Torres Strait Islander people in getting an NDIS plan

Experiences of activating a plan

The mixed experiences of Aboriginal and Torres Strait Islander clients receiving services through the NDIS

The negative image of the NDIS in the eyes of many in the community; and

Opportunities to improve the experiences of Aboriginal and Torres Strait Islanders in relation to the NDIS.

2.1. There are indications of unmet need for disability services for Aboriginal and Torres Strait Islander people in the ACT

There are a range of sources that indicate the need for disability services among the Aboriginal and Torres Strait Islander community in the ACT, however it is highly likely that these under-represent the true extent of need.

Getting an accurate indication of need is difficult

Nous encountered an underlying difficulty when attempting to quantify the need for disability services for Aboriginal and Torres Strait Islander people. Through consultation and from information gleaned from the First People’s Disability Network (FPDN) we understand that the idea of ‘disability’ is not common or accepted among Aboriginal and Torres Strait Islander families. Instead, what non-Indigenous people would call disability is often thought of as personal traits such as ‘Bob walks a bit funny’ or ‘Jenny has trouble talking, that’s just her’. The challenge with not identifying as having a ‘disability’ is that it prevents people from seeking professional support and care. Instead, support and care in Aboriginal and Torres Strait Islander families is often provided by family and friends, and there is rarely compensation for this care. It also makes the quantitative data on the prevalence of Aboriginal and Torres Strait Islander people with a disability a grossly conservative figure.

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Census data suggests unmet need

Aboriginal and Torres Strait Islander people are under-represented as NDIS participants in the ACT compared to the level of need for assistance with core activities. Australian census data from 2011 indicated 251 (5%) Aboriginal and Torres Strait Islander people in the ACT require assistance with core activities.

Meanwhile, the latest NDIS report to the Council of Australian Governments (COAG) states that in July 2016 there were 170 Aboriginal and Torres Strait Islander people in the ACT with NDIS plans. This suggests over 80 Aboriginal and Torres Strait Islander people in the ACT are likely to be eligible for an NDIS plan, but had not applied and/or received one at that point of time.

It is likely that there is significant unmet need in the provision of psychosocial disability support

People with severe and ongoing disabilities caused by mental illness are eligible to receive services through the NDIS.

There is considerable evidence that Aboriginal and Torres Strait Islander people experience high levels of mental illness and related psychosocial disability. In 2010-11, there were over 13,000 hospital separations for mental health conditions for Aboriginal and Torres Strait Islander peoples4. In addition mental health and related conditions have been estimated to account for as much as 22% of the health gap measured in Disability Life Adjusted Years5. Winnunga’s experience supports these figures, as they report that up to one third of their 6000 clients experience significant mental health issues. Corroboration also comes from the Aboriginal Legal Service in Canberra, which reports that a high proportion of their clients have ongoing need for psychosocial support. This feedback suggests that there may be significant numbers of Aboriginal and Torres Strait Islander people who may be eligible to receive psychosocial support through the NDIS. Developmental delay supports are also needed

While the actual figure for the prevalence of developmental delay (that often results from disabilities such as autism, hearing impairment, Down syndrome, Fragile X syndrome and more) among Aboriginal and Torres Strait Islander people in the ACT is unclear,6 reports from Winnunga and from the ACT Child Development Service suggest that this need is high and our consultations confirmed this need. The timeliness of early intervention for young children heightens the importance of an easy to access support scheme as a six month delay can make a substantial difference in the effectiveness of early intervention.7

2.2. Getting an NDIS plan has been difficult for many Aboriginal and Torres Strait Islander people

NDIS participants can be broadly thought of in terms of two groups of people with disabilities: those who received substantial support for disability services prior to the NDIS and were supported to apply for their NDIS plan, and those who received lower levels of disability care, and did not receive that support. The latter group have had to be much more proactive in applying for a plan.

The NDIS participants interviewed by the Opening Doors program from both these groups reported finding the process to obtain an NDIS plan confusing, discouraging and lengthy. However those who had received disability support prior to the NDIS found it easier to obtain documentation for the NDIA in order to get a plan, as they had accrued evidence of a disability in 4 AIHW, 2012; AIHW, 2012a5 Vos et al, 2007:26 Under reporting of disability in Aboriginal children is due to a number of factors, including mistrust of authorities and concern

that children will be removed from care, as well as cultural barriers to identifying as a person with a disability. 7 See, for example, ‘The Outcomes of Early Intervention for Infants and Toddlers with Disabilities and their Families’ (2011) by

the National Early Childhood Technical Assistance Centre. Link National Early Childhood Technical Assistance Centre

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http://www.nectac.org/~pdfs/pubs/outcomesofearlyintervention.pdf


the past. Meanwhile, many who had not previously accessed disability support face a significant challenge to obtain the level of evidence required by the NDIA to prove a permanent and enduring disability.

Participants found the process difficult to navigate and many interviewees required assistance to understand it

Participants identified the need to be ‘government savvy’ and to understand the jargon of the disability sector in order to obtain an NDIS plan that met their needs.

Getting evidence of the diagnosis of the condition causing disability can be expensive

Both participants and applicants reported the difficulty of getting proof of their diagnosis and disability. One element of this is long wait times and expense for appointments with specialist staff such as paediatricians. The other is the need to travel to specialists interstate. The cost of such trips is borne by the applicant or their family, which makes the application process impossible for some people.

Time limitations on the application process make it particularly stressful

Time limitations apply to providing supporting documentation, and to attendance at the planning meeting. Several interviewees experienced enormous stress through knowing that they had a limited time to provide documentation to support their claim:

Gugan staff reported that some applicants could not attend their planning meetings, and as a result their application did not proceed. This also presents considerable difficulties, as many Aboriginal and Torres Strait Islander people do not have private transport, and often lead complicated lives in which family crises demanding their attention are not uncommon.

Skilled and knowledgeable assistance made a big difference to the process of getting a plan

Interviewees who found the process easy had assistance, for example, from a relative who worked in the sector, or from a support provider who volunteered their time to assist with their application.

A few interviewees indicated that Gugan Gulwan had been involved in their application process. Many of our interviewees stated that they ‘could not have got an NDIS plan without the help of Gugan’. Some even stated that they don’t know what the process is, as Gugan essentially did the work for them. Others felt Gugan’s assistance with their application was not helpful, for example one stated ‘all they did was add an extra layer of communication. Instead of me chasing up the NDIA, I was chasing up [Gugan worker] to chase up the NDIA’.

Many simply did not know who to go to or what form to fill in to start an application. While the NDIA provides information online about how to apply for a plan, many interviewees did not have access to the Internet.

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2.3. There are barriers to using NDIS plans

As described above, an initial investigation of NDIS data indicated that in July 2016 there were around 170 Aboriginal and Torres Strait Islander people in the ACT with plans. However data requested from ACT service providers indicated a much lower number of Aboriginal and Torres Strait Islander clients actually in receipt of services. While this may in part be due to inadequate identification of Aboriginal and Torres Strait Islander clients by service providers, it is also likely to reflect a gap between people with a plan and those in receipt of services.

Participants who received an NDIS plan were often unclear on the next step in the process

Advice from Gugan, and interviews with service providers and individuals indicated that it is not uncommon for people to have plans, and not know how to use them.

There is a lack of understanding of the parameters of the NDIS – that is to say, where the NDIS planning process stops and a service provider or the NDIS plan holder themselves takes over. Interviewees reported asking those who had assisted them to get a plan (family, friends, or Gugan) for information on how to use it. Nous also heard from participants that there were insufficient case coordination hours built into their plans, resulting in difficulty in working out how to access the required supports.

Insufficient support coordination hours make it difficult to find assistance

A number of Aboriginal and Torres Strait Islander NDIS participants and disability service providers have reported that there are insufficient support coordination hours in NDIS plans. There are currently three levels of support coordination for NDIS participants who outsource the coordination of their support to service providers. These are in order of lowest intensity to highest ‘support connection’, ‘coordination of supports’, and ‘specialist support coordination’.

Service providers reported that often their clients will have either the wrong intensity of support written into their plan, and/or an insufficient amount of hours for this activity. For example, one service provider stated that one of the most significant problems was the discrepancy between the hours they officially work with families and are therefore able to charge to NDIS and the actual time spent with families.

More than one service provider commented that they cannot afford to take on these participants. Many Aboriginal and Torres Strait Islander people meet the criteria for having complex lives in which they engage with multiple agencies.

Some participants found it difficult to find service providers to deliver their plan

The evidence indicates that the most successful participants had a prior relationship with a disability service provider, and engaged their existing support to deliver their plan. However others have found their own service provider through trial and error, and still others have been supported by Gugan to find support coordination and service providers.

Participants who self-managed their plan faced additional challenges

Several Aboriginal and Torres Strait Islander participants who were interviewed self-managed their plans, with varying levels of success. Some found the process OK, but emphasised that it required a lot of record keeping and organisation. Some are transitioning from external support coordination to self-management. Most reported finding the self-management process tedious and confusing.

All interviewees who self-managed their plans expressed frustration at the transition from the original portal to the new one. There were reportedly extremely long delays in payments, which created financial stress.

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A major barrier is access to the internet

A clear theme that came through in consultations with NDIS participants is the difficulty of not having easy access to the internet. The census reports that 16% of Aboriginal and Torres Strait Islander people in the ACT did not have an Internet connection in 2011. 8

2.4. Once in receipt of services, experiences were mixed

While some participants found life-changing support through the NDIS, others found barriers to support and reported there was no improvement to pre-NDIS days (with a great deal more administrative burden).

Overall, the most common sentiment reported by participants was that they would be ‘worse off without the NDIS’.

Positive experiences all had a few elements in common

Interviewees who were happy with the services they received under the NDIS attributed it to:

Responsive and sensitive support workers: interviewees who had a good experience with their service providers often singled out their care worker as the reason for success. These care workers shared attributes such as: good communicators, reliable, dependent, timely, sensitive, conversational, able to have a laugh, and generous with their time.

An outreach model of care: Support workers who deliver their services into child care centres, homes and schools were very effective. Interviewees often found it hard to make appointments if they had to travel for them. This was for a range of reasons, for example: no access to a car, no money for petrol, no driver’s license, no supporting bus route, and/or no services within walking distance. One participant made the observation that her child behaves very differently when on-site at a service provider than they do at home or in school. This participant was pleased when they swapped to a service provider who was able to help her child out in school and at home instead.

A family centred approach: this approach to care recognises that families are central to people’s lives in many ways. It includes working in partnership with children, young people and families, and with other people who support them, including other services. A recurrent theme through our consultation was the importance of family. Those who had a good experience with service providers commented that the carers would provide their care in a way that better the whole family – for example, one carer would come to do personal care in the home at 7am to allow the mother and her other child to get ready for the day together and spend time together before school started.

The NDIS has resulted in an increase in disability supports for some

Some participants report that they are receiving more services under the NDIS than they were before it. A small group who state they don’t think they would have been able to have obtained these supports without the NDIS – in this case it was primarily interviewees with children in need of early intervention. In their feedback they suggest that this access to services is having a positive influence on them and their children.

8 2011 Australian Census.

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Some participants found barriers to receiving high quality care

Not all participants reported receiving culturally sensitive, high quality care, or better care than they had prior to the NDIS. Some felt that they received the same level of service, but had to spend a great deal more of their time on obtaining it. Others felt that the NDIS had not delivered anything of greater benefit or cultural appropriateness than before the NDIS.

Negative experiences share common elements

In instances where interviewees were dissatisfied with the services they received, it was often due to the unreliability of the support person. For example, one interviewee swapped service providers after the carer they allocated to her failed to show up for an important appointment. The carer did not answer their phone nor provide any indication that they couldn’t make the appointment. As a result, the interviewee scrambled to organise alternative care arrangements for her son.

There is a lack of culturally specific support services

It is clear that there is a lack of culturally specific support services for Aboriginal and Torres Strait Islander NDIS participants in the ACT. Not all interviewees identified this as an issue, however those who did felt particularly limited by this. For example, one interviewee is frustrated that there is no service that provides a cultural element to the care. They stated that their other children can participate in cultural activities, and that their child with a disability has no option but to engage in the non-cultural activities and supports that mainstream services offer.

The NDIS presents a genuine opening to address intergenerational trauma and disadvantage for Aboriginal and Torres Strait Islander people

For some participants, the services provided through the NDIS present a genuine opportunity to address generational trauma and disadvantage. This is particularly so for early intervention services.

2.5. The NDIS has a negative image to overcome for Aboriginal and Torres Strait Islander people in the ACT

Overall the perception of the NDIS among the Aboriginal and Torres Strait Islander community in the ACT is largely negative. This is a major barrier to the community being able to reap the benefits offered.

Consultation suggests that the drivers of this image are:

Confusion between the Enhanced Service Offer and the NDIS: The Enhanced Service Offer (ESO) preceded the roll out of the NDIS, and did not offer (and wasn’t intended to offer) the suite of services available for participants in the NDIS. However some ESO recipients thought that they had an NDIS Plan and were deeply disappointed. Unfortunately their experience was widely taken to be a reflection of the NDIS.

Some key opinion leaders in the community have had negative experiences with the NDIS.

Recent Media coverage that the NDIS is no longer taking participants in the ACT has enhanced the negative image.

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It is also likely that a broader mistrust for Government may also be a barrier to accessing an NDIS plan. For example, one mother commented that she didn’t know if pursuing an NDIS plan would have an implication on her custody of her child. Another service provider noted that their provision of child protection services is a huge inhibitor to Aboriginal families to access the NDIS. This provider would frequently encounter families who are reluctant to access their service because they believe they are under ‘reportable observation’ during their interactions.

2.6. There are opportunities to improve the experiences of Aboriginal and Torres Strait Islanders in relation to the NDIS

Through the consultations and information gathering of the Opening Doors Program, Nous has identified a number of ways in which the experience of Aboriginal and Torres Strait Islanders with the NDIS could be enhanced. These opportunities include:

An ongoing source of support to assist Aboriginal and Torres Strait Islander people to apply for NDIS plans

Changes to NDIA services that acknowledge and address existing barriers for Aboriginal and Torres Strait Islander clients.

Ongoing support to access plans

The material presented above demonstrates the difficulties Aboriginal and Torres Strait Islander people have had in getting a plan, and that skilled and knowledgeable support has been crucial for success. On the basis of these findings, Nous considers that there is a need for specific and tailored support for Aboriginal and Torres Strait Islander clients to be introduced to the NDIS and access a plan.

One option that partially meets the problem is to co-locate an NDIS Planner at Winnunga. This would have the advantages of being close to many potential clients and to the source of client records of diagnosis. During 2016 this option was discussed by the NDIA and Winnunga, but no decision was made.

The NDIS planner function needs to be complemented by co-located Local Area Coordination9 services which can assist people to complete the application process.

The NDIA can make simple changes to reduce the barriers to activating NDIS plans

There are several opportunities to address existing barriers to activating and using NDIS plans. These opportunities include:

Better marketing of plan coordination and services that are culturally sensitive would support Aboriginal and Torres Strait Islander people who are not self-managing to implement their plans. As referenced throughout this report, a lack of access to the Internet among a significant number of interviewees means that marketing needs to be both online and paper-based. The Opening Doors Project generated marketing materials that were distributed through Indigenous mailing lists and placed at Winnunga as well as at mainstream service providers. There is an opportunity to continue to update this material with service providers and the support they offer. Material such as this could be replicated in each jurisdiction to reflect local providers.

9 At the time of reporting an LAC services was not operating in the ACT as tenders were still being assessed

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NDIS planners could check participants’ understanding and capacity to implement their plan. NDIS planners have the opportunity to check with clients who elect to self-manage their plans that they understand the basic requirements of self-management. For example, they could check with the participant if they have reliable access to the Internet at home. If not, advise that they don’t elect to self-manage their plan. It is unclear whether this check is built into the planning process and is simply not consistently applied, or if it does not exist. Planners could also check that participants understand that participants actually know what is involved in getting their services and supports and the administration involved in payment etc.

Better data from the NDIA to provide regular and timely information on the extent to which plans are being used, where they are being accessed and if they are underspent. We understand some of this data is captured, however the Opening Doors Program was not able to access it, perhaps due to teething problems. Better access to this data would mean the extent of the issue around under-utilisation could be monitored and therefore managed.

Entry into the NDIS could be further improved for this client group by considering strategies that promote and support Aboriginal and Torres Strait Islander people with disabilities entry into the NDIS:

Child, family and community centres could be leveraged to help identify children who may be eligible for the NDIS, and work with the parents to explore the NDIS as an option they may be eligible for. There is evidence this is already occurring, however this isn’t driven by a strategic agenda and occurs ad-hoc.

Evidence gathering for NDIS eligibility needs better information on what is required, and where evidence can be obtained. If families have to travel to obtain evidence, there is an opportunity to consider strategies for how to provide financial support in obtaining diagnoses for people below a specified income threshold.

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3.Supporting existing Aboriginal and Torres Strait Islander community controlled organisations and businesses to become registered service providers

A major avenue for providing culturally sensitive disability services to Aboriginal and Torres Strait Islander people is existing Aboriginal community controlled organisations. These organisations focus on Aboriginal and Torres Strait Islander clients and tend to employ many Aboriginal and Torres Strait Islander staff. They have deep relationships with the Aboriginal and Torres Strait Islander community, and embody culturally sensitive service provision. In Canberra no existing Aboriginal community controlled services that provide disability services on an ongoing basis. One of the aims of Opening Doors was to support community controlled organisations in their consideration of becoming registered service providers through the NDIS.

Through the program Nous also provided assistance to other smaller Aboriginal businesses interested in providing NDIS services.

3.1. Opening Doors encountered a number of barriers to involvement of local community controlled services

There are two well established Aboriginal and Torres Strait Islander service provider organisations in the ACT – Winnunga Nimmitjyah (Winnunga) and Gugan Gulwan (Gugan). Winnunga is the only Aboriginal Medical Service in Canberra and provides an extensive suite of clinical, mental health and social support services. Winnunga has approximately 6000 clients, the majority of whom are Aboriginal and/or Torres Strait Islander people, and deep knowledge of the requirements of successful service provision to their client group. Gugan is a smaller organisation that provides a range of support services to Aboriginal and Torres Strait Islander young people and their families, including mental health and drug and alcohol services.

Nous worked with both Winnunga and Gugan through the Opening Doors Program to encourage them to consider delivering services through the NDIS. While there was a deep commitment to the need for culturally appropriate services to be available for their client group, both organisations remain wary of a number of administrative and cultural barriers that need to be overcome before these organisations feel comfortable with embarking on an NDIS service provider role.

Running a service line on a fee-for-service model is a steep learning curve

Both Winnunga and Gugan have been block funded for their entire history. The consideration of an initiative that would take them into a more business oriented model is challenging. The management of Gugan feel that their very existence as an organisation is marginal, and that they do not have capacity to undertake a venture that they perceive as extremely risky. Winnunga is a larger organisation, and has more capacity to consider the proposition. However they are clear that they will not recommend to their Board (who have the ultimate decision) any venture that has financial risk.

Nous negotiated with the ACT Government for specific assistance from the SDF to enable Winnunga to undertake a business case to determine the viability of becoming an NDIS service provider. Initial indications from this work showed that Winnunga has significant concerns about whether it would recoup sufficient revenue under the NDIS fee-for-service model to cover the

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costs of service provision. As at February 2017, investigation of the business case is still underway. When this is complete their Board will consider it in the light of the likelihood that the venture will break even and not expose the organisation to financial risk.

A combination of block and fee-for-service funding models creates difficulties

A further concern for Winnunga and Gugan is that a move into providing services through the NDIS could jeopardise their recurrent health funding by being seen as ‘double dipping’ by their health funders.

Spending of government funds through Aboriginal Medical Services is tightly monitored, and has often been the subject of controversy. Winnunga management is therefore understandably risk averse in undertaking any activity that could jeopardise their core health funding.

The Aboriginal Community Controlled Health sector needs assurance that participation in the NDIS will not jeopardise their health funding

To overcome this barrier, the two main sources of Commonwealth funding for Aboriginal Medical Services – the Commonwealth Department of Health and the Department of the Prime Minister and Cabinet – need to provide formal advice to the sector that income earned through the NDIS will not be treated as replacing health funding, or result in a decrease in health funding. Until this advice is provided it is likely that many Aboriginal Medical Services (including Winnunga) will be reluctant to become involved.

Similar advice needs to be provided in Aboriginal community controlled organisations like Gugan who provide a range of social and emotional wellbeing services. Many of these services fit into the social supports that can be accessed through the NDIS, and could therefore be used by participants – and provide a further source of income to Gugan.

A funded ‘transition stage’ may be a vehicle to encourage Aboriginal community controlled services to become involved in the NDIS

As a part of the transition to the NDIS in the ACT disability service providers were offered a range of supports to assist them in the move to operating in a fee-for-service environment. The Aboriginal community controlled sector does not deliver disability services, and did not see a need to apply for these funds until the final grant round. The funding Winnunga then received to develop a business case assisted them to consider offering NDIS services but could not serve the purpose of implementation assistance.

From our interactions with Winnunga, Nous concluded that the offer of some financial assistance contingent on a decision to proceed may provide a temporary buffer to allow Winnunga to register and commence offering NDIS services. Nous has encouraged Winnunga to register and commence with a limited service range (such as supports coordination) as a trial to understand the impact on their business and finances. Some temporary underwriting of any financial loss would be likely to act as an incentive to proceed in this way.

The experience with Winnunga indicates that, given the desirability of Aboriginal community controlled organisations becoming NDIS service providers, it may be worth considering the provision of specific assistance to such organisations if they make a decision to proceed down this path. While this may be seen as duplicative of funding buckets available across mainstream providers, it is clear from the Winnunga experience that a decision to proceed needs specific incentives at this early stage. Such assistance could be targeted to the employment of staff in order to provide a temporary buffer against financial loss or could support the design and implementation of effective back office support to ensure that financial management of service provision is effective.

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3.2. Support for small Aboriginal and Torres Strait Islander businesses to become registered service providers

Another potential source of culturally sensitive disability services is through Aboriginal and Torres Strait Islander owned small businesses. The experience of the Opening Doors program is that there are considerable barriers to realising this potential.

The Opening Doors has worked extensively with one small business to help get them registered as a service provider in the NDIS. This business is well positioned to provide high quality, culturally sensitive services. They are a Mum and Dad organisation, and an Aboriginal Corporation registered through the Office of the Registrar of Indigenous Corporations (ORIC). They have relevant skills to offer personal care, home help, supports coordination, and gardening and maintenance services– a Certificate 4 in Community Services, experience in the disability field, a qualified carpenter, appropriate equipment and insurances. They also have prior experience in running a business.

Despite their suitability the process has been slow and difficult. Figure 5 (page 28) presents their journey through the registration process. Part of this can be ascribed to the teething problems of the NDIS systems, with documents being lost and changes being made to systems. However there are also barriers that are likely to be more ongoing. The family are not wealthy and encounter issues that put their business out of action on a regular basis. Such issues as insufficient credit on their mobile phones, lack of a functioning computer (for example running out of printer ink and being unable to afford to re-stock) and unpaid telephone bills created significant barriers. This disrupted their attempts to get registered, as they couldn’t receive the texts that gave them the passcode to enter the site. Access to the internet was a major barrier as use of the NDIS portal is central to the registration process. The expense of gathering the documentation needed for quality assurance was a further challenge. The experience of this small business’ journey to become a registered NDIS service provider is captured in Error: Reference source not found overleaf.

Provision of assistance to small Aboriginal and Torres Strait Islander businesses would increase the provision of culturally sensitive services

Nous supported a small Aboriginal business for over twelve months in their efforts to become registered with the NDIS and leveraged additional support from the NDIS. Most organisations would not be able to access this level of support, which included accessing the internet in the Nous office. The experience of this business suggests that other small businesses are also likely to need assistance in meeting the registration requirements. There are several programs to support Aboriginal and Torres Strait Islander people into business, and these can provide assistance in the skills of running a business. In order to maximise the impact of these business support services expertise in navigating the complexities of the NDIS also needs to be available. This could be done through:

supplying resources and training to existing business support programs

providing additional resources so they can employ staff with NDIS expertise

creating specialist capacity within the NDIS and ensuring good linkages between business support services and the NDIS.

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4.Developing and supporting cultural sensitivity in mainstream NDIS service providers

The majority of disability support services are currently provided to Aboriginal and Torres Strait Islander clients through mainstream service providers. It is therefore important that many of these organisations are able to provide genuinely appropriate and culturally sensitive services. Through the Opening Doors program, Nous worked to encourage ACT organisations to consider how to provide culturally appropriate services to Aboriginal and Torres Strait Islander clients.

There are two major strands to improving organisations’ ability to deliver culturally sensitive services. The first is ensuring that the organisation has a commitment to organisation-wide strategies that provide an organisational commitment to culturally sensitive services.

The second is making sure that front line staff understand the attitudes and behaviours that underlie successful relationships with Aboriginal and Torres Strait Islander clients.

4.1. The Opening Doors program provided a tailored suite of organisational supports to interested organisations

The Opening Doors project worked with thirteen service providers to improve the cultural sensitivity of their service offering and operation. These clients were selected through an Expression of Interest process which emphasised the potential size of the Aboriginal and Torres Strait Islander market, and the desirability of delivering culturally sensitive care. Their service delivery areas are home care, transport, mental health, support coordination, early intervention, disability employment services, and behavioural and social support services.

Rather than offering cultural awareness workshops, Nous provided these organisations with exposure to a range of activities involving a number of engagements over a period of time. This approach aimed to give these organisations a sustained chance to consider how to implement effective changes to their practices.

Organisations were involved in the following initiatives:

Learning about the requirements for high quality service delivery for Aboriginal and Torres Strait Islander clients through a visit to Winnunga Nimmityjah, the local Aboriginal Medical Service, and a presentation from Winnunga’s CEO

Being connected to Habitat, the Indigenous Employment service provider in the ACT through organisational visits and a presentation, so that they know how to go about recruiting and retaining Aboriginal and Torres Strait Islander staff

Designing recruitment processes to increase the likelihood of Aboriginal and Torres Strait Islander applicants being successful

Speaking with Coolamon Advisors – an Aboriginal owned company with disability expertise - about strategies they might consider implementing to improve their cultural sensitivity

Access to a web-based tool for frontline service providers on successful strategies for working with Aboriginal and Torres Strait Islander clients

Procuring from Aboriginal and Torres Strait Islander businesses when practicable

Attending Aboriginal and Torres Strait Islander public events to show support

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Re-considering the way they apply for funding to deliver services to Aboriginal and Torres Strait Islander clients – from applying for the funds and then wanting to work with the community, to building an ongoing relationship and applying for funds as a result of consultation

Ensuring their identification of Aboriginal and Torres Strait Islander clients is thorough and that they monitor their progress through the service – including length of stay

Being thoughtful about which staff they assign to Aboriginal and Torres Strait Islander clients

Prioritising an outreach service model of Aboriginal and Torres Strait Islander clients.

Marketing support through inclusion in publicity materials (provided at Error: Reference source not found) targeted to Aboriginal and Torres Strait Islander people about their services and what they offer

Six organisations went through individual extensive work with Coolamon Advisers to generate their Reconciliation Action Plan and associated Indigenous Employment Strategy, Procurement Strategy and community building exercise.

These activities resulted in changed practices across a number of organisations. Four services (Duo, Marymead, Belconnen Community Services and Nexis Employment Services) have developed or re-developed Reconciliation Action Plans that commit them to working with the Aboriginal and Torres Strait Islander community in a constructive, informed and sustained way.

Feedback from participating organisations indicates that they found this assistance useful. The exposure to a range of strategies gave organisations several options for how to build bridges with the Aboriginal and Torres Strait Islander community as a whole, and thus with individuals. Attendance at community events, considering procuring through Aboriginal and Torres Strait Islander organisations and developing (or re-committing) to a Reconciliation Action Plan were presented as broadly based strategies that create impetus for change.

There is no outcome data that can provide evidence of improved service provision to Aboriginal and Torres Strait Islander community members. However, conversations with organisations during the program indicated that learnings were being absorbed back into the mainstream organisations. For example one organisation is considering recruiting a group of Aboriginal and Torres Strait trainees in order to create a cohort of workers that can support each other and thus increase the likelihood of retaining them and building solid Aboriginal and Torres Strait capacity within their organisation. Another example is one organisation that realised that if they bid for funding to work with Aboriginal and Torres Strait Islander people they need to go in partnership with local organisations in the bid – not seek to work them with after they’ve received the funds. Another organisation changed its practice on reflection of its learnings from this project in order to improve its identification process. This has enabled it to better understand its Aboriginal and Torres Strait Islander client group and understand the demographic makeup of its client base overall.

The NDIS payment structures mean that organisations have less capacity for activities that are not directly client related

Building links with the Aboriginal and Torres Strait Islander community takes time and sustained commitment. Many organisations participating commented that it was almost impossible for them to undertake such activities through income generated from the NDIS. The fee per hour structure of payments and lean payment rates means that organisations do not have capacity to engage in significant work beyond that needed to deliver services to individual clients. This limits their ability to undertake the sorts of activities described above.

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This is a major barrier to improving the quality of service provision to Aboriginal and Torres Strait Islander clients through organisational level change. A suggested strategy, discussed in the final section, would be for the supports coordination fee for an Indigenous client to be increased to take this additional requirement for successful service provision into account.

4.2. The program developed a cultural sensitivity resource to educate frontline staff on creating good relationships with Aboriginal and Torres Strait Islander clients

The second capability needed for quality, culturally sensitive service provision to Aboriginal and Torres Strait Islander clients is the attitudes and behaviour of front line staff. Nous spoke with Aboriginal and Torres Strait Islander clients and asked for their experiences on the hallmarks of great service. Their responses can be summarised as someone who:

Talks with the carer and lets them know what’s going on

Doesn’t judge

Can have a laugh

Understands that family life can get complicated

Will notice the whole family and do small things to mean that their client is free to concentrate – like putting the kids down in front of the TV

Can be flexible and change their days around sometimes

Can provide their services at different sites – not their only own office.

Nous encountered several case studies where relationships between service providers and their Aboriginal and Torres Strait Islander clients are flourishing. Staff who work successfully with Aboriginal and Torres Strait Islander clients share the attributes of sensitivity to cultural values, a family centred approach, and a non-judgemental attitude. These attributes can be heightened through good quality training and resources.

Nous created a resource containing this content for frontline (and management) staff. The intention of the resource is to give organisations a frame from which to reflect on how their organisation and their personal practices can be conducive to positive relationships with Aboriginal and Torres Strait Islander clients. The resource will be displayed on the NDIA, ACT Community Services Directorate and First People’s Disability Network websites. The content for this resource is at Error: Reference source not found.

4.3. There is unmet demand for Aboriginal and Torres Strait Islander workers

Through consultation with Aboriginal and Torres Strait Islander people with a disability and their carers, it is clear that many have a preference to have an Aboriginal and Torres Strait Islander support worker, either through an Aboriginal controlled organisation and/or through a mainstream organisation that employs Aboriginal and/or Torres Strait Islander staff. Indeed some stated that they would prefer to have no care rather than a non-Indigenous person in their home. Other people advised that they prefer to have a non-Indigenous worker and organisation as it offered more anonymity.

Feedback from service providers reinforced this message. Several reported that a program targeting Aboriginal and Torres Strait Islander people ran well while they had an Aboriginal and Torres Strait Islander worker, but attendance/participation fell off as soon as that worker left.

It is clear that the availability of Aboriginal and Torres Strait Islander workers in all fields of care will have an immediate impact on the level and quality of culturally sensitive care available. Addressing recruitment and retention issues is therefore a key to improving culturally sensitive service provision.

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Employment services offer an avenue for recruitment and assistance with retention

The ACT has a Vocational Training and Employment program that focuses on linking Indigenous people with jobs and providing post-employment mentoring and support. This program is run by Habitat Personnel, an Aboriginal community controlled organisation (Habitat Personnel). This service is recognised as the hub for Indigenous recruitment activity. It offers access to Group Training Organisations and other programs which assist workers to undertake appropriate training. As described above the mainstream organisations involved with Opening Doors were introduced to Habitat and their staff, and now understand the services available.

There is a need for a community sector wide approach to increasing the employment of Aboriginal and Torres Strait Islander staff

Disability services are not the only area of community services that benefit from having Aboriginal and Torres Strait Islander staff. The whole community services sector is likely to experience similar difficulties in recruitment and retention.

A strategic approach to this would be to create a sector wide indigenous employment strategy that generates a sustained approach to the issue. Such a strategy would:

create sustainable capacity to assist organisations looking for Indigenous staff

create sustainable linkages between employment agencies and service delivery organisations

use marketing to conduct sector wide recruitment.

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http://www.personnel.org.au/


5.Strategic issues for the Commonwealth Government to consider

This section presents a distillation of the key issues learned from the experience that Aboriginal and Torres Strait Islander people in the ACT have had of the NDIS, and their implications for the wider roll out of the NDIS. The issues revolve around four themes:

Specific modifications to the NDIA approach to improve the experience for Aboriginal and Torres Strait Islander clients

Strategies that offer support for the Aboriginal and Torres Strait Islander community controlled sector and Aboriginal owned businesses to participate in the NDIS

Targeted assistance for mainstream providers

Addressing the unmet demand for Aboriginal and Torres Strait Islander workers.

5.1. Response to the under-utilisation of Plans

The experience of the under-utilisation of NDIS plans among the Aboriginal and Torres Strait Islander participants in the ACT has important ramifications for the wider roll out of the NDIS. There are several possible strategies to both monitor and address this issue:

Collect and disseminate data on plan utilisation. While Nous understands that NDIA does collect this information, the Opening Doors program was unable to gain access to it. It would be a very useful measure of how well the process is working. Anecdotally there appears to be a significant gap between plans being completed and services being in place.

Flag participants who haven’t utilised their plans (or have very low utilisation) and refer them to the appropriate entity

Ensure that Planners talk with participants with their first plan about the process of using their plan and provide paper based advice and sources of supports coordination. Nous is concerned that with the new “my first plan” approach NDIA will have even less direct engagement with new participants than they had through the ACT trial.

Ensure that Local Area Coordinators and Planners have strong linkages with Aboriginal and Torres Strait Islander organisations.

5.2. The pivotal role of supports coordination for Aboriginal and Torres Strait Islander people

The fee for service model presents problems for service providers delivering services to clients with highly complex and changeable lives. Issues such as missed appointments, the need to liaise with multiple service providers who often have high staff turnover, and disruption caused by family crises make the regularity needed for viable fee for service arrangements much less likely. This is particularly acute for Aboriginal and Torres Strait Islander people, many of whom are suspicious of service providers and require extensive contact before a productive relationship can be developed.

There is a genuine risk of market failure for these clients, as service providers may be unwilling to take on the risk of a loss making client.

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Good support coordination can maximise productive relationships between service provider and client

A skilled supports coordinator with an excellent relationship to both the client and their service providers can minimise this risk. They can be the key link with the client and their family, and make sure that service providers do not waste time waiting for clients who don’t turn up and so on.

This approach can only be successful when the supports coordination role is adequately funded. There are reports of plans having inadequate provision of support coordination hours. It is important that this be rectified.

One solution to this would be to conduct a fact finding program to establish what supports coordination hours are commonly needed for Aboriginal and Torres Strait Islander participants with varying levels of complex needs. The results of this research could then be used by the NDIA to amend internal guidelines for planners, for example including benchmarks on suitable supports coordination hours.

5.3. The need for non-internet based information dissemination strategies

A major theme arising from consultation has been the need for good internet access to be able to get maximum value from the NDIS. This is true for both participants and service providers. There is excellent evidence that many Aboriginal and Torres Strait Islander people do not have ready access to the internet, and this constitutes a major disadvantage in utilising the NDIS.

Consideration needs to be given to non-internet based information disseminations strategies. It is also additional motivation to provide better access to telephone information services.

5.4. The NDIA marketing needs to acknowledge fears that government may intervene in other ways

The message that the NDIS is separate to other government programs needs to be heard. This project has highlighted that Aboriginal and Torres Strait Islander people do not see the NDIS as completely separate to the other agencies in their lives. The fear that participating in the NDIS will impact on child custody arrangements is an example of this. It is important to ensure that potential participants understand how the NDIS works, and its separation from other government programs. If this message does not get through there is a high likelihood that some of the most vulnerable potential participants will chose not to participate, and thus never get the assistance they need.

Possible strategies to get this message out are:

For the NDIS to create materials clarifying their role and distribute them to state based child welfare services and so on and distribute them on paper based as well as internet mediums

For the NDIS to work with relevant agencies to ensure they are aware of some Aboriginal and Torres Strait Islander people’s fear of getting involved, and can be proactive in reassuring them that participation will not impact on their interactions with other agencies.

5.5. The importance of the community controlled sector becoming involved in the NDIS

Aboriginal community controlled organisations such as the Aboriginal Medical Services (AMSs) have a successful track record of providing services to the Aboriginal and Torres Strait Islander population. They are a trusted source of care and provide services that are culturally appropriate for their clients. They are therefore a vital component in the future delivery of high quality, culturally sensitive services through the NDIS. Should a substantial proportion of this sector

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choose not to participate, it will significantly diminish the potential contribution of the NDIS to this highly vulnerable and disadvantaged group.

The sector faces particular challenges in becoming involved with the NDIS

There is a real possibility that AMSs across the country will choose not to engage with the NDIS.

Our experience indicates that Aboriginal organisations with a long history of block funding are very wary of the NDIS for two reasons. First, there is a lack of confidence in a fee for service model of business, associated with limited skills in business planning, cash flow management, invoicing and so on. This lack of confidence is prompting a conservative and essentially negative interpretation of the financial viability of delivering services through the NDIS.

Secondly there is concern that billing the NDIS for services will be interpreted by their funding bodies as double dipping against their block funds and/or their Medicare generated income thus jeopardising their current funds. The leadership of these organisations is sensibly cautious about taking on initiatives that might compromise their existing block funds. Clear communication from funding bodies that delivering services through the NDIS will not jeopardise their current funding is needed to address this issue.

Possible solutions to these two barriers are:

Provision of transitional funding during the implementation of NDIS services. This funding could underwrite the employment of staff or support the design and implementation of effective back office support to ensure that financial management of service provision is effective.

An alternative strategy would be to provide block funding for AMSs to provide disability services to Aboriginal and Torres Strait Islander people who fulfil the eligibility criteria set by the NDIS. This could be regarded as a specific strategy for a period of say 2-3 years, to ensure that AMSs become NDIS service providers and have a period of grace to bed down the new arrangements.

Provision of formal advice that delivering services through the NDIS will not be regarded as ‘double dipping’. This will need to be sought from a range of state and Commonwealth funders

The NDIS offers opportunities to Aboriginal and Torres Strait Islander people to become involved in business

There are a wide range of programs that support Aboriginal and Torres Strait Islander people into business10. These programs – or a specific new program - need to have a good knowledge of the NDIS and their registered service provider requirements so that they can assist Aboriginal and Torres Strait Islander businesses to register, and to understand the business model required.

10 For example

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Possible strategies for useful input are:

NDIS to give presentations on the opportunities of the NDIS at Aboriginal and Torres Strait Islander business forums

NDIS to liaise with various business support programs to ensure that they are on their ‘radar’

NDIS to fund a specific new centre to provide support to Indigenous NDIS start-up businesses. This might be funded for a period of 3-5 years.

5.6. Improving the capacity and capability of the Aboriginal and Torres Strait Islander workforce is important

Consultations with Aboriginal and Torres Strait Islander people and NDIS service providers highlighted the importance of Aboriginal and Torres Strait Islander staff in attracting and retaining Aboriginal and Torres Strait Islander clients. They also indicated that many mainstream organisations struggle to recruit and retain staff of Aboriginal and Torres Strait Islander descent.

The whole disability sector is struggling with workforce issues, particularly in the light of the expanding roll out of the NDIS. It is important that the issue of Aboriginal and Torres Strait Islander workforce is specifically included in strategies implemented to address workforce shortages.

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Appendix A De-identified case studies of participants and unsuccessful applicants

Mary and Tom – hard, but worth it

Mary’s teenage son Tom has autism. Mary found out about the NDIS through staff at the Woden Community Centre (WCC) who were providing support services to Tom. For a fee of $500 (funded by Mary herself) a WCC planner helped to prepare documents that Mary had to have before she could get a Plan for Tom, and came to the NDIS planning meeting. Mary commented “without her it would have been an absolute nightmare.”

The first planning meeting with NDIS was pretty bad – the planner, Mary and Tom all went (Mary got time off work to go). They waited for 20 minutes while the NDIS lady read the application. It would have been a lot less stressful if she had read the application before the meeting. After the meeting Mary didn’t hear anything for weeks, so she called them. The NDIS told her that they would be in touch within two weeks. Six weeks later Mary followed up again. The WCC planner also sent an email. Eventually, they received approval for Tom’s plan.

The NDIS Plan has meant that Tom can get better services than he was before

Despite how hard it was to get a plan, some good things came out of it. Tom now gets occupational therapy, special classes for autistic young people and sessions with a psychologist. The WCC planner found really good occupational therapists and a great psychologist. They visit Tom’s school to work with him. Without the NDIS Mary couldn’t have afforded any of this, and all of them have made a real difference to Tom.

Managing Tom’s plan hasn’t been easy

There have been a lot of stressful times in managing Tom’s plan. For example at one stage Mary wasn’t able to get a response about a travel bill for Tom for six months. Another difficulty has been getting Tom’s plan reviewed. A meeting time was made over the phone, but Mary never heard back to confirm it. So now she doesn’t know when his Plan will be reviewed, and she doesn’t have any certainty on what services she’ll be able to afford through Tom’s plan for next year. The occupational therapy people want to work out what services Tom needs for next year, but they can’t because Mary can’t tell them what services will be included in the Plan.

Another thing that is difficult is that the planner who helped Mary right from the start has left WCC, and Mary now has a new person who helps her. Mary is worried about attending the next review meeting without her old planner. She was really important to help Mary understand what she could request for Tom in his NDIS plan. The other issue is that the older planner knew what services to approach to access services that Tom required, and without her, Mary doesn’t know how to get access to services or who to approach.

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Fran and Jack – after some false starts it is now good for Jack

Fran has three kids. Her middle child, Jack, has intellectual and physical disabilities and has been receiving help from different services since he was a baby. Fran is a single mum, and her mother has helped her out a lot with going through the process of getting a plan for Jack.

Fran went to the NDIS because the government organisation that used to look after Jack told her that they couldn’t look after him anymore because the NDIS meant that they didn’t get their government funding in the same way. All their clients had to look for money through the NDIS if they wanted to keep getting services.

Getting Jack’s Plan was hard

Fran’s first planning meeting with the NDIS was daunting. The staff used big complicated words and asked “what early intervention programs do you want?” without explaining the NDIS and what support and services were available. Fran’s mum came to the meeting and helped the whole way through. Fran has been frustrated by the NDIS.

Jack’s plan started in November 2015 and didn’t pay for very many services. It was reviewed after six months to make sure the services were what Jack needed. A second review was planned but that was cancelled by the NDIA. Communication about the cancellation was an issue. They sent an email on a Sunday about the cancellation. The following week period Fran received 11 phone calls from different staff members at the NDIS. Now the review has been postponed for six months. The family is worried that Jack will miss out on vital services in the next six months due to the huge delay. Also, he is growing up and his needs have changed since his last plan.

It took a while to find the right services, but now it’s good

But for all the trouble that the plan has been, Fran is pretty happy with the support that Jack is getting now. Fran is self-managing Jack’s Plan and it has been really hard to find good service providers. It didn’t work too well for a while. They landed up with a service based in Brisbane, and they never knew when they might come to Canberra. After a while they decided to find another service provider – which was hard.

But now they have found an outreach ‘one-stop shop’ service who give Jack physio, OT, and speech therapy services, and they go to Fran’s place and Jack’s school to work with him. Jack has had to repeat a level of school, but the outreach service has really improved how he is at school, and he goes a lot more often now. They are also helping with managing Jack’s plan. They recently contacted the NDIS for Fran to tell them that Jack cannot wait for another six months for a plan review and additional services.

So for Fran and Jack the NDIS has been really hard, but the services that she can get for Jack are a good thing.

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Margaret and Ben – getting better all the time

Ben is a happy cheeky boy, but he has serious neurological problems. For most of his life Ben has mainly been looked after by Margaret because she didn’t really want to ask for help. She has been his full time carer. Ben got a plan with NDIS because the place where he sometimes went suggested it, and Gugan Gulwan helped Margaret with the application. Marymead helped a lot too. Margaret has a Support Coordinator who understands the NDIS and makes sure that Ben gets the services that he needs that are on his Plan. The Planner is trying to help Margaret self-manage some parts of Ben’s Plan, but Margaret is worried that she makes mistakes that mean that Ben will miss out.

Ben’s plan includes support for transport, holiday and respite programs, all his therapy, and hydro activities at the swimming pool. He also has a school and therapy work program. He goes to respite care at the Ricky Stuart House (RSH). He goes every Monday and Thursday for dinner and personal care. Sometimes he stays a few nights a week.

Getting good home support is difficult

Getting support services at home has been a challenge. One company used to provide all the home support services for Ben including showering for an hour in the morning and afternoon. But they couldn’t find people to come in at the time Margaret needed them, and could only provide services for three mornings a week. So now Margaret is using two providers. It is still not easy. There have been times when care workers call in the morning to confirm they are on their way and then not show up at all. Eventually Margaret would like to find someone who would be a permanent fit and that can bond with the family.

Working with the NDIS is frustrating

Margaret reflects that her experience with the NDIS ‘hasn’t been horrible, but it has been annoying’. She comments that it would be helpful to have some consistency. In the beginning Margaret had a good planner – but she went on leave. Then all Ben’s paperwork went missing, including his plan and support letters. For a long time, Margaret did not have a planner. Then she had a 90 minute phone interview to recreate Ben’s plan. Since then she has had four or five planners, and she is always having to retell their story. Another frustrating thing is that when she rings the NDIS she is often on hold for an hour.

Things are looking up - recently Margaret was allocated a new planner who has been great. She emails straight back and has provided her personal mobile and phone numbers.

Using the NDIS portal means you have to be able to connect to the internet

The NDIS portal is really difficult. Margaret has been trying to get on to the portal for months, but she has been unsure how to use it, and information seems to be missing. To make things harder Margaret can’t connect to the internet at home because she can’t afford to set up her own connection. She visits her friend’s house every time she needs to connect.

The NDIS is good for Ben, and it will get better when Margaret has more experience at using it

Margaret feels the NDIS means that it is easier to get Ben what he needs, and she has more support and freedom for herself. Although she feels the NDIS is a good idea, Margaret knows it’s hard to spend the funds and get the right services at the right time - especially in Canberra. It takes time and she feels she is still in the trial in error phase with finding the right support services for Ben.

She has learned that when you go to a NDIS planning meeting or review, it’s hard to know what to ask for and ‘if you don’t ask for it you don’t get it’, which is a hard thing for people who

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approach the NDIS for support, but aren’t supported with the information they need to reach their personal goals.

Alice and Taylor – having missed an opportunity is worse than no opportunity at all

Alice is a single mum with four kids. Taylor is a worry for her. She’s nine but she walks oddly, and doesn’t really toilet herself properly. Taylor goes to an ordinary school, but she has a lot of trouble there. The other kids tease her, and she doesn’t like it much.

Alice heard about the NDIS and thought that she might be able to get some help for Taylor through it. Gugan Gulwan helped her with an application. The NDIA said that the application needed more papers to show what was wrong with Taylor before it could be approved. Alice didn’t know where to go to get the right papers. Now the NDIA has said that if she doesn’t get them very soon her application will run out of time.

Alice isn’t sure what to do – she doesn’t know how to get the papers. So even after doing all the work for the application, she will land up with nothing for Taylor. It makes her feel really bad.

Robert, Jean and Michael – money for nothing

Robert is Jean and Michael’s grandfather. He is looking after them because their mum is struggling with mental health issues. Jean and Michael both have ADHD and Michael has bad vision in one eye. It means that he really struggles in school. Both boys had help from Therapy ACT before it closed.

Robert applied to the NDIS for Plans for both kids. He was told that he had to have more information. So he went to Therapy ACT, Winnunga and the eye specialist to get the records. The eye specialist records were really hard to get. He had to take the kids to Sydney and pay for the trip himself. They had to stay overnight because of the time of the appointment. There is a provider at Michael’s school who could have helped, but they say that they can’t help until Michael has a Plan.

He still doesn’t have the right paperwork. Robert has pretty much given up now. He feels really disappointed that he hasn’t done the best thing he can for his grandkids – but he doesn’t know what else he can do.

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Sharon and Fiona – a life changer

Sharon is carer for Fiona – her grandchild. Fiona had a tough time when she was younger as her mum comes under the Mental Health Act and couldn’t really give her a stable home.

Sharon was worried that Fiona wasn’t speaking in sentences by the time she was three. The Care and Protection worker told her that Fiona needed speech therapy. The speech therapist told them about the NDIS. Then Gugan Gulwan and Fiona’s Care and Protection Worker both helped Sharon get a Plan for Fiona. They helped her to fill in all the paperwork, and went with her to the interview with the NDIA. Sharon said they were fantastic. Now the NDIS pays for Fiona’s speech therapy.

Sharon thinks the Plan Fiona has is just right. She has found a service provider called Aspect. They come to Fiona’s childcare centre and work with her there. That means that Sharon doesn’t need to worry so much about transport to get Fiona to appointments, which used to be really difficult because she doesn’t have a car. Aspect also call Sharon once a fortnight to talk about how Fiona is going, and tell her about what Fiona has been doing at her sessions.

Speech therapy has changed Fiona’s life

Sharon is incredibly proud of how far Fiona has come since receiving support from Aspect through the NDIS. She said “She used to be really shy. She didn’t talk much, she’d hang her head and wouldn’t look people in the eye. Now, she walks into Gugan and says ‘hello’ to everyone. She’s so chatty, she doesn’t stop.” Sharon is really proud that Fiona is now fascinated by space travel and the pyramids in Egypt. She plans to get her a small telescope for Christmas.

Gugan still help Sharon with the NDIS. Sharon is really grateful because the NDIS is complicated and without all the help she’s had she probably wouldn’t have got a Plan for Fiona. She’s not sure who she needs to talk to about what, and when. Sharon doesn’t have the Internet at home which makes it hard to get information about the NDIS. The other thing that is really difficult is that when she calls the NDIS she is often on hold for a long time – then her phone runs out of credit and she has wasted her time and money.

Sharon’s overall impression of the NDIS

Sharon is happy with the NDIS. She recommends it to people.

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Xanthe and Jasmin – NDIS has made life harder

Jasmin needs a lot of care and she always will. She has intellectual and physical disabilities that mean she always needs someone with her. Jasmin has had an NDIS plan for quite a while.

It doesn’t get any easier. Since the plan started it has been lost, and Xanthe had to get all the documents for it again; it was impossible to find out what was in the plan, and organise the right services – and because of that Xanthe didn’t get the services for Jasmin that she could have. Through it all the NDIS don’t return her calls, they don’t admit when they’ve made a mistake, and they are often really rude.

Xanthe has to self-manage parts of Jasmin’s plan. It takes a lot of her time, and makes her life more difficult than it was before the NDIS.

And the biggest disappointment of all – there are no services that are for Aboriginal people. There are no activities that Jasmin might go to with other Aboriginal kids, no ‘Aboriginal centred’ activities.

Jasmin gets pretty much the same supports that she had before the NDIS, by Xanthe has to put a lot of her time into getting them.

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Documents

Opening Doors – improving access to high quality ... Web viewThe Opening Doors program ran from September 2015 to February 2017. ... the latest NDIS report to the Council of