CENTRAL
AUSTRALIAN
ABORIGINAL
CONGRESS
ABORIGINAL CORPORATION
ICN 7823
Joint Standing Committee on the National Disability Insurance Scheme
PO Box 6100
Parliament House
Canberra ACT 2600
By email: NDIS.joint@aph.gov.au
28 February 2024
RE: NDIS participant experience in rural, regional and remote Australia
Dear Committee Members,
Central Australian Aboriginal Congress (Congress) is a large Aboriginal Community Controlled Health
Service (ACCHS) based in Mparntwe (Alice Springs). We are one of the most experienced
organisations in the country in Aboriginal health, a national leader in primary health care, and a strong advocate for the health of our people. Since the 1970s, we have developed a comprehensive model of primary health care that includes:
multidisciplinary clinical care health promotion and disease prevention programs and action on the social, cultural, economic and political determinants of health and wellbeing.
Congress delivers services to more than 17,000 Aboriginal people living in Mparntwe and remote
communities across Central Australia including Ltyentye Apurte (Santa Teresa), Ntaria
(Hermannsburg), Wallace Rockhole, Utju (Areyonga), Mutitjulu, Amoonguna, Imanpa, Kaltukatjara
(Docker River), and Yulara.
Congress is a registered provider under the National Disability Insurance Scheme (NDIS) and continues to invest in, and expand, the services which we are able to deliver. Currently this includes a Remote Community Connectors (RCC) team, an Evidence, Access and Coordination of Planning (EACP) program, as well as Allied Health therapeutic services for both children and adults.
In addition to this, Congress operates a number of early childhood intervention programs such as
the Child Health and Development Centre, Children and Family Intensive Support Service, and Child
and Youth Assessment and Therapeutic Service (CYATS) which all play a vital role in the early detection of neurodevelopmental conditions. Congress is also a provider of an Information Linkages and Capacity Building (ILCB) program which aims to build the knowledge, skills and confidence of people with disability, and improve their access to community and services.
Congress facilitates an ‘Aboriginal People with Disability’ Reference Group, a vital consultation mechanism which helps to provide us with lived-experience views and opinions from people with disability and carers, in order to shape service provision and inform areas for advocacy. As a result, Congress has extensively written and presented evidence on the feasibility, application and
effectiveness of the NDIS in the Central Australia region. We are confident that the key
recommendations that we continue to advocate for action on will make a difference in the NDIS participant experience in wider rural and remote Australia.
………………………………………………………………
Central Australian Aboriginal Congress ABN 76 210 591 710 ICN 7823
Aboriginal Corporation PO Box 1604, Alice Springs NT 0871
Phone (08) 8951 4400 caac.org.au
These have included:
Key Recommendations
Permanent funding for Remote Community Connector Programs
Recognition that Aboriginal Community Controlled Health Services are the preferred providers for services under the NDIS for Aboriginal people
Resourcing of coordination, logistical support and information sharing to support integrated delivery of visiting NDIS-funded services to remote Aboriginal communities
Development of appropriate protocols for sharing NDIS plans across relevant service providers (such as plans being uploaded onto My Health Record so that providers are aware of the services that participants are entitled to or are receiving)
The need for ‘start-up’ grant funding as an alternative NDIS service
commissioning approach in remote areas
Below, I will briefly address the Terms of Reference for the NDIS participant experience in rural, regional and remote Australia Inquiry, though will refer to Congress’ previous relevant submissions for further background and detail. These submissions have included:
Letter to Mr D Franklin, NDIS Review Secretariat, re: NDIS Review consultation process follow-up, September 2023 (Attachment 1)
Submission to the Department of Social Services / National Disability Insurance Agency
National Disability Insurance Scheme Thin Markets Project, August 2019
Submission to the Senate Community Affairs References Committee Inquiry into effective approaches to prevention and diagnosis of FASD and strategies for optimising life outcomes for people with FASD, December 2019
Congress Witness Statement, Disability Royal Commission, September 2021
Comments on the National Children’s Mental Health and Wellbeing Strategy, February 2021
Terms of Reference
a. the experience of applicants and participants at all stages of the NDIS, including application, plan design and implementation, and plan reviews;
Today Aboriginal people in Central Australia have very high levels of disability (7% of those aged 15 or more report having a profound or severe disability). Families provide much of the care needed (19% of Aboriginal people in the region report providing unpaid care to family members) while their capacity to do so is reduced due to poverty, overcrowding isolation and lack of services [1].
Populations bearing the burden of multiple, complex overlapping social and health challenges are those least able to navigate the complex bureaucracy of personalised systems such as the NDIS [2]. These differences are multiplied significantly in cross cultural situations, which apply for Aboriginal people in Central Australia where large sections of the population speak English as a second language and where the historical (and sometimes contemporary) experience of mainstream services lead many Aboriginal people to be suspicious of them and to avoid engagement.
Congress’ NDIS Remote Community Connector Program provides support for Aboriginal clients to apply for the NDIS, as well as to understand and access the scheme. This team provides regular support to remote communities with the objective of reducing a geographical barrier to NDIS access. In 2022/23, the NDIA requested assistance from the Congress Remote Community Connectors (RCCs) to support 341 NDIS participants. The RCCs work with these participants to navigate the complex processes of NDIS, and ensure that they are familiarised with the concept of ‘goal-setting’. The concept of goal-setting can have difficulty translating across cultures and in this context, and rapport building and advocacy is essential to ensure that participants have all the services and
equipment included in their NDIS plan to meet their needs. Supporting participants to access the NDIS is not billable under the scheme and dedicated and secure (permanent) funding to support these essential support programs is critical to ensuring that all eligible participants can access the services that are required for them to participate in their community and improve their quality of life.
Other Congress-based programs such as CYATS, the ILCB, and Congress’ wider Social and Emotional Wellbeing team provide essential wrap around services to support our community members to be referred to, and access, the care they need in a culturally responsive manner. This is inclusive of supporting both children and adults to obtain access to NDIS plans and services that give them the best chance of developing and participating in community life. We have presented on the vital importance of early childhood intervention programs in the early detection and management of neurodevelopmental conditions at the Disability Royal Commission. Without these services, young people would not have the formal diagnosis required to maintain access to critical therapeutic services that support their development.
Congress’ strong social and cultural knowledge of community, relationships built on trust, and extensive experience in delivering a range of holistic, multidisciplinary and community-led services, leads us to be valued for our expertise in complex care, including supporting those with complex social needs. Evidence has shown that ACCHSs are more effective in delivering outcomes than mainstream services, achieving comparable outcomes, but with a more complex caseload [3]. It is for these reasons that Aboriginal organisations – and especially ACCHSs – should be formally recognised as the preferred providers for services under the NDIS for Aboriginal people.
b. the availability, responsiveness, consistency, and effectiveness of the National Disability Insurance Agency in serving rural, regional and remote participants;
We are experiencing a workforce crisis in remote Australia and NDIS services and agencies have been impacted. This leads to staff shortages or high staff turnover which reduces efficiencies and compromises both continuity of care and ability to provide a culturally responsive service. In cases where these shortages exist, we have experienced the oversight of plan development from NDIA staff that do not live in the Central Australia region. There may not be an understanding of the complexities and cross-cultural considerations of this region, resulting in NDIS plans that do not meet the needs of the participant. The importance of the Aboriginal-identified support/liaison roles are key in providing cultural brokerage between participants, families and NDIA service providers. These key team members understand participants’ cultural context and the pressures and challenges faced by our community, and would bolster the effectiveness of the NDIA where shortages exist.
For those children aged 7 and up and adults on NDIS individual packages, a major challenge to effective service provision is care coordination and logistics in an environment marked by a low number of clients across a very large geographical region. In this context, ‘fly-in / fly-out’ services to remote communities are a necessity, but such visits need to be coordinated with local primary health care service and other providers who have the regular contact with NDIS clients. Accordingly, there needs to be ongoing resourcing of coordination and logistics to support the effective delivery of visiting NDIS-funded services to remote Aboriginal communities.
Systems to ensure more integrated care and information sharing for Aboriginal NDIS participants are required. Central Australian Aboriginal people are highly mobile and may need to access care at different locations at different times of the year or different periods in their lives. In this situation, ensuring that all providers have access (with appropriate consent) to a participant’s NDIS plan is critical to ensure that their needs are known and that service providers have access to the resources to be able meet those needs. This will also ensure that services are not duplicated, delayed or missed. This may include, for example, that NDIS participants will have their plan uploaded onto My Health Record so that providers are aware of the services they are entitled to or are receiving.
c. participants’ choice and control over NDIS services and supports including the availability, accessibility, cost and durability of those services;
A fundamental tenet of the NDIS and similar personalisation schemes is giving people choice and control over the services they receive. This is well intended and, in some contexts, reasonable given the strong relationship between disempowerment and poor health and wellbeing [4,5]. However, promoting personal choice for people in contexts where they are not able to meaningfully exercise that choice is likely to cause stress and undermine social and emotional wellbeing. In particular, personalisation schemes such as the NDIS do not work unless there are sufficient service providers to meet demand and provide choice [2]. This basic requirement is not met in many regional and remote areas where populations are dispersed and the costs of delivering services are high. Central Australia is one such area.
It is clear that the NDIS does not work well to support the health and wellbeing of Aboriginal NDIS participants in remote areas, and may even serve to ‘widen the gap’ between their outcomes and those in well-serviced mainstream and urban areas where the NDIS works more as it is intended. To address this structural issue, Congress has proposed an alternative commissioning approach using grant funding in remote areas (MM6 and MM7) as these areas are thin markets and market failures exist. Grant funding is a way to ensure that services can be provided so that NDIS participants are able to access the services outlined in their plans. This is of particular importance in remote areas as less than 50 per cent of NDIS plans are being drawn on. Two years of start-up grant funding support in thin markets is required to enable services to be established and learn how to charge for NDIS services. After a two-year period, the level of grant funding could be reassessed.
We have written extensively on recommendations to address this in our Submission to the
Department of Social Services / National Disability Insurance Agency’s National Diabetes
Insurance Scheme Thin Markets Project.
d. the particular experience of Aboriginal and Torres Strait Islander participants, participants from culturally and linguistically diverse backgrounds, and participants from low socio-economic backgrounds, with the NDIS;
As an ACCHS, Congress has recommended solutions that have been informed by the lived experiences of Aboriginal people from in the Central Australia region who are interacting with, and participants of, the NDIS. It must be recognised that, at present, the NDIS does not work well to support Aboriginal people across the lifecourse in remote areas. There is an opportunity to get this right, and these community-recommended actions need to be implemented to ensure that this vital scheme is fit for purpose across all regions.
With kind regards,
Dr Donna Ah Chee
Chief Executive Officer
References
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Australian Bureau of Statistics (ABS). 2016 Census Community Profiles. 2016; Available from: http://quickstats.censusdata.abs.gov.au/census_services/getproduct/census/2016/communit yprofile/7?opendocument.
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Malbon, E., G. Carey, and A. Meltzer, Personalisation schemes in social care: are they growing social and health inequalities? BMC Public Health, 2019. 19(1): p. 805.
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Mackey P, Boxall M, and Partel K, The relative effectiveness of Aboriginal Community Controlled Health Services compared with mainstream health service, in Deeble Institute Evidence Brief. 2014, Deeble Institute for Health Policy Research; Australian Healthcare and Hospitals Association.
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Syme S, Social determinants of health: The community as an empowered partner. Preventing Chronic Disease: Public Health Research, Practice, and Policy, 2004. 1(1)(1-5).
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Tsey, K., The control factor: a neglected social determinant of health. Lancet, 2008. 372(9650): p.
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