Introduction by Croakey: Stronger integrity provisions for the National Disability Insurance Scheme (NDIS) are welcome, but for Aboriginal and Torres Strait Islander people with disability, important questions and concerns surround the reforms passed this week, according to researcher Candace Angelo.
The reforms must enact the National Disability Insurance Agency (NDIA) commitment for the NDIS to reflect First Nations concepts of disability and wellbeing, and ensure culturally safe and equitable access, power-sharing, cross-sector collaboration and community-centred approaches as priorities, she says.
The reforms provide an opportunity “to correct weaknesses in the NDIS rather than reproducing them in a different form”, writes Angelo, a Yuin woman, Registered Nurse and Indigenous public health scholar at the University of Sydney Faculty of Medicine and Health.
“For Aboriginal and Torres Strait Islander people with disability, the measure of successful NDIS reform cannot simply be slower expenditure growth or fewer participants. It must be whether people with disability are better supported.”
Candace Angelo writes:
Australia’s National Disability Insurance Scheme (NDIS) was built on a powerful principle: that people with permanent and significant disability should have choice and control over the supports they need to live their lives.
There is also little serious dispute that the NDIS needs reform. Scheme costs are growing, fraud and provider exploitation must be addressed, and an individualised insurance model was never designed to become the only functioning disability support system in the country.
A sustainable NDIS matters, particularly to those with the most significant disability who will depend upon it throughout their lives.
But sustainability cannot be measured only in dollars.
The NDIS reforms passed by the Senate this week represent one of the most substantial changes to the Scheme since its establishment. The legislation strengthens integrity measures, changes how participant budgets can be determined and provides the foundation for tighter eligibility arrangements from 2028.
Government projections anticipate that more than 240,000 people could leave the Scheme in the four years following the introduction of the new eligibility arrangements.
For Aboriginal and Torres Strait Islander people with disability, this transition requires particular scrutiny.
The central question should not simply be: who no longer qualifies for the NDIS?
It must also be: what will actually be there when they leave?
Unequal playing field
Around one in four Aboriginal and Torres Strait Islander people live with disability. In 2022, 25.3 percent of Aboriginal and Torres Strait Islander people had disability and 11.6 percent had a profound or severe limitation. Among children aged 0–14 years, the prevalence of disability was estimated at 18.8 percent.
Research confirms that Aboriginal and Torres Strait Islander children experience a higher prevalence of disability than other Australian children, with early intervention from across the health, education, and social service sectors vital for improving outcomes.
Yet disability prevalence tells only part of the story.
Aboriginal and Torres Strait Islander people encounter disability within health and social systems already shaped by geographical isolation, socioeconomic disadvantage, racism, fragmented service provision and longstanding underinvestment in community-controlled services.
Equity in access to disability support services is critical for addressing health disparities faced by Aboriginal and Torres Strait Islander peoples, yet since its rollout in 2016, the NDIS has faced criticism for limited access among Indigenous Australians. Systemic challenges remain, including under-identification of Indigenous status, missing data on utilisation, and barriers associated with housing instability.
The NDIS Review itself acknowledged that First Nations people with disability experience the compounding effects of racism and ableism.
Research highlights that Aboriginal and Torres Strait Islander people are deaf or hard of hearing have diverse support needs encompassing socio-cultural, communication, health and disability specific support domains, with the capacity of the NDIS to address these needs varying from positive to sub-optimal outcomes.
The NDIS is complex and difficult to navigate, culturally unsafe services remain a problem, and services in some communities are unavailable or provided only intermittently.
These are important considerations when moving towards systems that place greater emphasis on formal assessments of functional need.
Context matters
A functional assessment may appear neutral. But an assessment tool operates within a social and cultural context.
Who asks the questions? In what language? Where does the assessment occur? What constitutes “independence”? How are family and kinship responsibilities understood? How is fluctuating disability captured? What happens when someone has spent a lifetime adapting to impairment and consequently understates their support needs?
And, critically, whose understanding of functioning is embedded in the assessment itself?
Research has found that a low level of cultural competence in the initial stages of the disability assessment and planning process exacerbated participant confusion and distrust towards assessment staff and the NDIS. Given difficulties in communication, participant understanding of the NDIS was generally limited.
The necessity of culturally safe and appropriate use of interpreters was stressed, as was the role of trusted individuals, including existing service providers, Community Connectors and family members in providing a solid base for participant understanding of the NDIS.
For Aboriginal and Torres Strait Islander people, these are not peripheral implementation questions. They are questions of equity.
Scrutinising functional assessment
There are reasonable arguments for reducing reliance on diagnosis alone.
Two people with the same diagnosis can have profoundly different support needs. A system intended to support functional impairment should therefore consider what a person can do, the barriers they encounter and the assistance they require rather than treating a diagnostic label as a proxy for disability.
That principle is defensible.
But replacing one imperfect gateway with another does not automatically create equity.
Standardised assessment processes can reproduce disadvantage when they assume culturally universal ideas about communication, self-care, household functioning, community participation and independence.
Health assessment tools developed using mainstream or Western concepts have been widely used in clinical practice worldwide, but even culturally adapted or culturally based tools may not be relevant in other social contexts if they are grounded in Western beliefs and perspectives.
The application of mainstream assessment tools, when used in Indigenous populations, can lead to the inappropriate application of normative data and inaccurate or biased diagnosis of conditions as Indigenous concepts of health differ from Western biomedical concepts of health.
This is particularly important in Aboriginal and Torres Strait Islander communities where concepts of health and wellbeing can be relational and interconnected with family, community, culture and Country.
Indeed, the NDIA’s own First Nations Strategy 2025–2030 recognises the need for the Scheme to reflect First Nations concepts of disability and wellbeing and identifies culturally safe and equitable access, power-sharing, cross-sector collaboration and community-centred approaches as priorities.
The new eligibility system must live up to those commitments.
If a supposedly objective assessment systematically underestimates need because it fails to recognise cultural and community contexts, the problem will not be the individual failing the assessment.
The problem will be the assessment failing the individual.
Without accurate prevalence rates of neurocognitive disability, homeless Aboriginal and Torres Strait Islander people are in danger of not being counted by the NDIS and not receiving supports to which they are entitled.
Greatest risk
Much of the political debate has focused on people leaving the NDIS and moving towards foundational supports, including children with developmental delay and lower support needs.
Conceptually, there is merit in rebuilding those services.
The NDIS was never supposed to replace adequately funded health, education, early childhood and community services. A child should not need to establish permanent and significant disability simply to access developmental support.
A strong universal and targeted support system outside the NDIS could therefore be a positive reform.
But there is a dangerous difference between building an alternative system and assuming one exists.
That distinction is particularly important in rural, remote and Aboriginal communities.
The NDIS Review found that more than 60 percent of First Nations participants in remote and very remote communities were receiving disability supports for the first time through the NDIS. It simultaneously found persistent problems with workforce shortages, culturally inappropriate services and limited local service availability.
A scoping review has revealed gaps in the provision of quality, culturally responsive disability services for families of Aboriginal and Torres Strait Islander children living in regional, rural and remote areas of Australia. Key themes identified include the need for a holistic approach, understanding disability in cultural context, consistent relationships, flexibility, simplified systems and enhanced communication.
Removing someone from an individualised funding scheme does not create a speech pathologist in a remote town.
It does not create an occupational therapist.
It does not create an Aboriginal disability worker.
And it does not create a culturally safe developmental service within an Aboriginal Community Controlled Health Organisation.
Research into the NDIS planning process in regional, rural and remote regions found limited papers exploring people’s experiences, with analysis identifying themes around healthcare workforce and NDIA staff shortages, NDIS package holders’ and carers’ lack of awareness of the NDIS, cultural and socio-economic barriers, travel funding challenges, and the emotional burden of the NDIS planning process.
Australia’s rural health services face chronic workforce shortages, with nursing and allied health students facing significant barriers including increased financial stress, travel and accommodation challenges, and isolation issues.
If foundational supports are poorly developed when eligibility changes commence, responsibility will not disappear. It will simply move.
It may move to Aboriginal Community Controlled Health Services already carrying enormous demand. It may move to schools, primary care and state health systems. And, most commonly, it may move back to families.
Research found that carers from Aboriginal or Torres Strait Islander backgrounds and those from low socio-economic status had significantly lower scores on wellbeing indices, highlighting an urgent need to increase the supports available to this population.
That is cost shifting, not reform.
Issues for Aboriginal children
The implications for Aboriginal and Torres Strait Islander children deserve special consideration. Early developmental differences occur within the context of substantial inequities in access to paediatricians, allied health practitioners, diagnostic services and culturally safe assessment.
Children living in regional and remote communities can already wait considerable periods for assessment and intervention. Families may travel hundreds of kilometres for specialist appointments. Others disengage from systems that have historically not been culturally safe.
A study investigating early screening programmes for Aboriginal and Torres Strait Islander infants found the need to identify children ‘at risk’ of adverse neurodevelopmental outcomes, with researchers highlighting the importance of culturally appropriate detection tools for identifying infants requiring specialist diagnosis and treatment at a young age.
Many Aboriginal and Torres Strait Islander children are affected by chronic middle ear infection or otitis media from infancy, which has a negative impact on development of listening and communication skills, with deficits often not detected until school-age when the opportunity for early intervention is lost.
A system that increasingly distinguishes between children requiring intensive individualised disability support and those expected to receive mainstream or foundational supports therefore needs to ensure that the second pathway represents a genuine service, not simply another waiting list.
This is where the success or failure of reforms such as Thriving Kids will ultimately be determined.
The test should not be whether a child has successfully transitioned out of the NDIS.
The test should be whether that child is receiving timely, culturally safe and effective support somewhere else. Research demonstrates that early childhood anaemia among Aboriginal and Torres Strait Islander children more than doubles the risk of developmental vulnerability at school age, underscoring the importance of accessible, culturally safe maternal and infant health care.
An opportunity
None of this means the NDIS should remain unchanged.
There is a legitimate public interest in ensuring that billions of dollars intended for people with disability are not lost through fraud, inflated prices, conflicts of interest or provider exploitation. Stronger integrity provisions are therefore welcome.
There is also a legitimate debate about the boundaries of an insurance scheme and which supports should properly be provided through health, education and broader community systems.
But reform provides an opportunity to correct weaknesses in the NDIS rather than reproducing them in a different form.
The NDIS Review recommended alternative commissioning arrangements for First Nations and remote communities, developed in genuine partnership with communities and community-controlled organisations rather than relying exclusively on conventional disability markets.
That approach deserves much greater attention.
Governments should specifically resource Aboriginal Community Controlled Organisations to design and deliver foundational disability and developmental supports.
Research into interprofessional collaborative practice found that providers need to share common goals and vision within a complex cross-sector service landscape, with consideration of how governance can coordinate and unlock the strength of schools and community settings as service delivery locations.
Aboriginal and Torres Strait Islander people with disability must have genuine decision-making authority in the design, validation and monitoring of new assessment processes.
Cultural competence in disability assessment and planning can be strengthened through multi-level engagement with the Aboriginal community-controlled sector and community leaders, and implementing mechanisms to enable the involvement of families, trusted service providers and Community Connectors can support a more meaningful understanding of individuals’ needs within their cultural context.
There should also be transparent reporting of eligibility and transition outcomes by Indigenous status, age, disability, remoteness and jurisdiction.
If Aboriginal people are disproportionately found ineligible under the new arrangements, we should know quickly and not discover it years later in an evaluation.
And no Aboriginal or Torres Strait Islander participant should transition from the NDIS on the theoretical promise that another service will eventually become available. Alternative supports should be demonstrably available, accessible and culturally safe before transition occurs.
Sustainability and equity
Governments have an obligation to ensure that the NDIS remains financially sustainable.
They have an equally important obligation to ensure that reform does not deepen existing disability and health inequities.
The two goals should not be positioned as opposites.
Australia can have an NDIS focused on people with substantial and permanent disability while also building strong developmental, community and foundational supports outside it. We can tackle fraud without making legitimate participants feel that they are the cause of the Scheme’s financial problems. And we can develop more consistent assessments while recognising that consistency is not the same thing as cultural neutrality.
The NDIA’s First Nations Strategy commits the Agency to equitable access, cultural safety, community-centred approaches and greater power-sharing with Aboriginal and Torres Strait Islander people.
The coming reforms will provide a significant test of those commitments.
For Aboriginal and Torres Strait Islander people with disability, the measure of successful NDIS reform cannot simply be slower expenditure growth or fewer participants.
It must be whether people with disability are better supported.
If thousands of Aboriginal people disappear from NDIS participant numbers but reappear on health waiting lists, in overstretched community-controlled services, in struggling schools or in families expected to fill the gap, Australia will not have solved its disability support problem.
We will simply have moved it somewhere less visible.
• References for this article are available here.
Author details
Candace Angelo, from The University of Sydney Faculty of Medicine and Health, is a Registered Nurse and Indigenous public health scholar whose work spans Aboriginal child and family health, health equity, health promotion and emerging health technologies.
Previously at Croakey: Government calls reforms to NDIS “essential” – but key organisations express alarm, devastation and distress
See Croakey’s archive of articles on the NDIS
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