As the National Disability Insurance Scheme has evolved, its individual funding arrangements have come under the microscope more and more – but policymakers must also consider the needs of those who aren’t able to access funding through the scheme, Sue Olney writes.
Australians with disability grapple with a range of issues in searching for and accessing everything from goods and services to activities, employment, and places readily available to people without disability.
Public submissions to Australia’s Disability Strategy 2021-2031, the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, and numerous inquiries by the Joint Standing Committee for the National Disability Insurance Scheme (NDIS) show this, shining light on persistent barriers to people with disability participating in mainstream social and economic activity.
More than 500,000 Australians receive individual funding through the NDIS to purchase support and services to meet their disability-related needs. They are called NDIS participants. This funding is not supposed to be an oasis in the desert, however.
Inclusion of people with disability in mainstream society is a critical component of the NDIS insurance model. It can prevent, reduce, or delay the need for people with disability to access specialist disability services and individual funding through the NDIS, while also improving outcomes for them and their families.
For that reason, the NDIS is also intended to help all Australians with disability – including 2.4 million people aged under 65 years – to connect with services and support beyond the scheme, and to help communities and mainstream service systems become more inclusive.
This work falls under ‘Tier 2’ of the original three-tiered structure of the NDIS, implemented as ‘Information, Linkages and Capacity Building’ (ILC).
It currently encompasses a grants program administered by the Department of Social Services and – to varying degrees – referral and community capacity building through contracted NDIS Local Area Coordinators, overseen by the National Disability Insurance Agency. It is not working effectively.
Its failings can be attributed in part to flawed policy design and underfunding, and in part to operational failure.
But the causes and effects of its shortcomings are inextricably linked to a broader governance environment over which it has limited influence.
Both markets and core government services have demonstrated that in some circumstances, they are unwilling or unable to bear the costs of providing services to people with disability or adapting to meet their needs.
There are lingering questions about the relationship between the NDIS and key policy areas like health, education, employment, transport, housing, and aged care, and the interface between ILC and Australia’s Disability Strategy 2021-2031. There’s no doubt this is challenging terrain for governments to navigate, but it cannot remain in the too-hard basket.
Tier 2 of the NDIS is critical for two main reasons.
First, the financial sustainability of the NDIS hinges on people with disability being able to access mainstream services and activities.
Second, there are people with disability who are not NDIS participants who need dedicated support, in the face of entrenched socio-economic disadvantage, to maintain their wellbeing and the wellbeing of their families.
They include people who may be eligible for individual NDIS funding who face barriers to successfully applying for entry to the scheme, people with disability outside the scheme’s eligibility criteria who have lost access to services and supports previously block-funded by the Commonwealth, state and territory governments, along with people living in places where affordable and accessible services, housing options, technology, and employment opportunities are limited.
Tier 2 of the NDIS is an under-examined, high-risk and complex policy environment that is shaping the life course of some of Australia’s most marginalised citizens, with far-reaching social and economic costs. Without intervention, it will generate significant increases in NDIS costs. Policymakers must step in.
The Melbourne Disability Institute, with the Brotherhood of St. Laurence and Baptcare, has been researching if and how working-age Australians with disability who are not NDIS participants are finding and using any support and services they need to participate in society and the economy.
There are approximately 1.8 million Australians with disability in this group – 12 per cent of Australia’s working-age population. Our soon-to-be-released findings, drawing on multiple sources of data collected in three states, are bleak.
They reveal a gulf between the promoted availability and accessibility of support and services to people with disability without NDIS funding, and people’s experiences of trying to find and use them.
They indicate that investment in ILC is not meeting the needs of people with disability who are not NDIS participants, and that support and community capacity building through Local Area Coordinators – promoted by both the NDIS and the Department of Social Services – is not being delivered.
They highlight inequalities and inconsistencies in costs and access to both mainstream and disability-related services, and unmet demand for services, leading to heavy reliance on family support. They also flag a concerning ‘double driver’ of future government costs. If people with disability and their families are unable to afford or access support to maintain their wellbeing, and exhaust personal resources to the point of crisis, they will ultimately need higher levels of support from the NDIS and other government services.
The overwhelming majority of Australians with disability are not NDIS participants. Yet for the most part, the knowledge, experiences, needs, and priorities of these people, their families, carers, and advocates, and those interacting with them in the community, are not reflected in policy and practice.
The data needed to illuminate service gaps and overlaps, encourage best practice, and address structural barriers to inclusion for people with disability are patched together from multiple sources with competing interests, and information on the flow-on costs and benefits of policy action across jurisdictions is incomplete. The risks of misreading this environment are high.
To date, attention has – understandably – been focused on issues surrounding individual NDIS funding for people with permanent and significant disability. But these issues are compounded by the persistent marginalisation of people with disability in mainstream social and economic activity, shrinking access to services and support outside the NDIS, and cost-shifting across governments and service systems.
The sustainability of the NDIS hinges on whole-of-government support for Tier 2. For the sake of the millions of Australians with a stake in the scheme, and most importantly, those individuals whose lives depend on access to essential services and support, this cannot be ignored.