Making every Australian count: challenges for the National Disability Insurance Scheme (NDIS) and the equal inclusion of homeless Aboriginal and Torres Strait Islander Peoples with neurocognitive disability

Additional keywords: consumers, drug and alcohol, epidemiology, health policy, Indigenous health.

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD)¹ establishes the rights of all people who have a disability to accessible, appropriate, evidence-based services that enable them to achieve personal goals and to enjoy a quality of life equal to that of people who do not have a disability. Australian Commonwealth and state governments have undertaken significant disability policy reform over the past decade to recognise and promote the rights of people living with a disability.² Central to this reform agenda is the National Disability Insurance Scheme (NDIS), which is to be fully implemented by the end of 2019.³ The NDIS reflects a systemic move away from traditional models of service delivery by repositioning people with disability within a consumer market. Individual ‘choice and control’ are fundamental principles, with eligible individuals allocated individualised funding to purchase care and support services. It is to be an all-inclusive scheme in which ‘every Australian counts’.⁴

Although the NDIS represents the most significant disability policy reform in Australian history, there are concerns that Australia’s First Peoples will face greater barriers to accessing disability supports than non-Indigenous Australians.^5,6 Homeless Aboriginal and Torres Strait Islander people with neurocognitive disability are especially at risk of missing out on the NDIS.

Disability research among Australia’s First Peoples has received limited attention.^7,8 Current estimates suggest that Aboriginal and Torres Strait Islander people experience approximately twice the rate of disability as non-Indigenous Australians.⁹ The proportion of Australia’s First Peoples aged 15 years and over reporting a disability or long-term health condition has been estimated at 37% (roughly 102 900 people).¹⁰ However, current estimates of disability prevalence appear to be undercounts.^11,12 The incidence of neurocognitive disability in particular has not been accurately established, but is thought to be high.^11,13

According to the American Psychological Association (APA),¹⁴ neurocognitive disability is caused by acquired (rather than developmental) damage to the brain where the ‘primary clinical deficit is in cognitive function’.¹⁴ A neurocognitive disability may result from a traumatic brain injury, infection, dementia, or substance abuse, for example.¹⁴ Although the APA’s¹⁴ definition may characterise Fetal Alcohol Syndrome Disorder (FASD) as a developmental disability, several scholars in the field have argued that prenatal exposure to alcohol represents an acquired (rather than developmental) impairment that is difficult to identify and manage.^15–18 In Aboriginal and Torres Strait Islander homeless populations, the prevalence of neurocognitive disability is likely to be particularly high given: (1) people with a disability are at greater risk of homelessness compared with the general population;¹⁹ and (2) the proportion of homeless Aboriginal and Torres Strait Islander people is 14-fold higher than for non-Indigenous Australians.²⁰ Given the dearth of accurate evidence available to inform the NDIS regarding the extent and nature of neurocognitive disability among homeless Aboriginal and Torres Strait Islander people, it can be assumed that the level of need for disability assistance by this group has not been properly estimated.

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. Addressing this knowledge gap is challenged by a range of factors, including:

• the long-term effect of profound intergenerational disenfranchisement resulting in limited self-determination and/or fear by Aboriginal and Torres Strait Islander people to seek help²¹

• Aboriginal and Torres Strait Islander cultural perspectives around disability (e.g. there is no word for ‘disability’ in traditional languages; the label of ‘disability’ may be stigmatising and result in a disinclination to identify people in need of support)²²

• neurocognitive disability is often generally unrecognised and poorly understood⁵

• historically, research methods have not been culturally safe⁹ and have been negatively experienced by Aboriginal and Torres Strait Islander people²³

• research logistics (i.e. difficulties in locating people, particularly those who are rough sleepers and/or are living in rural or remote areas of Australia)²⁴

• the absence of culturally appropriate assessment tools to identify prevalence.¹¹

An accurate evidence base that is informed by culturally safe research methods and assessment tools is needed to accurately guide the Commonwealth government and the National Disability Insurance Agency about the expected level of need for the NDIS and to be ‘NDIS ready’.

The development of a strong evidence base to inform the successful inclusion of homeless Aboriginal and Torres Strait Islanders with neurocognitive disability in the NDIS will only be achieved through ongoing, culturally safe partnerships with Aboriginal and Torres Strait Islander people and the use of culturally safe research methodologies and tools. To accurately identify the prevalence of neurocognitive disability within the Aboriginal and Torres Strait Islander homeless population, a culturally appropriate assessment tool must be developed and tested for reliability and validity. The authors are currently undertaking a comprehensive study to achieve this objective. Future research must also investigate the viability of the NDIS model for non-urban communities and, in particular, the practical challenges inherent in living in regional and remote areas of Australia. Evidence collection must be conducted in community by people who have credibility and respect, taking into account cultural learning, the importance of family and community, the history of disadvantage and mistrust, and heterogeneous ways of knowing, thinking and doing. Respect for Aboriginal and Torres Strait Islander ways and spirituality will be paramount. Research within this framework can inform effective, culturally appropriate and safe evidence-based policy reform and development inherent within the NDIS initiative and will contribute to the realisation of a truly inclusive NDIS.

The authors report no actual or potential conflict of interest that could inappropriately influence, or be perceived to influence, this work.