Finding support outside the NDIS
Since Australia’s National Disability Insurance Scheme was created nearly ten years ago, its roll out has been closely scrutinised by governments, policymakers, researchers, and advocates. More than 500,000 Australians now receive individual funding through the NDIS to purchase support and services to meet their disability-related needs. However, the overwhelming majority of the 4.4 million Australians with disability are not NDIS participants. Whether and how their needs are met outside the NDIS has profound implications for the scheme’s sustainability, and more broadly for the entire Australian community. In today’s post, Dr Sue Olney, Dr Amber Mills and Liam Fallon discuss their research into how working-age people with disability without NDIS funding are faring. Their findings reveal a huge gap between talk and action on disability inclusion.
We asked working-age people with disability without NDIS funding how they are finding and using any support and services they need in their day-to-day lives. Their responses reveal a clear discrepancy between talk and action in ‘Tier 2’ of the NDIS.
What’s the issue?
Australians with disability grapple with a range of issues in searching for and accessing everything from goods and services to activities, employment, places and spaces - all of which are more readily available to people without disability. The persistent barriers people with disability face to participating in mainstream social and economic activity are well-documented in 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 NDIS.
People with disability have a right to be included in society and the economy. But inclusion is also a critical component of the NDIS insurance model. Access to the same services and supports as the rest of the Australian community can prevent, reduce or delay the need for individual funding through the NDIS, and improve outcomes for people with disability and their families. For that reason, the NDIS is intended to help all Australians with disability – including 2.4 million people aged under 65 years – connect with services and support beyond the scheme, and to help communities and mainstream service systems become more inclusive.
When the Productivity Commission recommended the introduction of the NDIS, it saw it working within a tiered ecosystem of support for people with disability. Only people meeting specific criteria would receive individual funding. Tier 2 of the original structure of the NDIS was designed to connect all people with disability to the same opportunities and services as everyone else in the community. Over time, Tier 2 has been rebadged as ‘Information, Linkages and Capacity Building’ (ILC), which includes a grants program administered by the Department of Social Services and – to varying degrees - referral and community capacity building performed by NDIS Local Area Coordinators.
To date, this aspect of the scheme has been long on platitudes and short on impact.
Getting Tier 2 of the NDIS right is vital because:
the financial sustainability of the NDIS hinges on people with disability being able to access mainstream services and activities
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, and people living in places where affordable and accessible services, housing options, technology, and employment opportunities are limited.
It 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.
Our findings
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. Our limited study doesn’t reflect the experiences of all people with disability in that category, and our data doesn’t represent the full and complex landscape of stakeholders, services and support in that environment. However our findings, drawing on multiple sources of data collected in three states, offer important insights into financial, logistical, and personal challenges faced by people with disability in their day-to-day lives.
We found a clear gap between the promoted availability and accessibility of support and services to people with disability who are not NDIS participants, and people’s experiences of attempting to find and use them.
We found:
complex, disconnected and incomplete markets of services and supports being navigated by people with disability and their families and carers
a service ecosystem riddled with inconsistent costs, eligibility criteria, information, priorities, accessibility and availability of services
unmet demand for accessible and affordable services and support, leading to heavy reliance on informal support networks and personal resources for many people who are not NDIS participants.
Our findings indicate that the NDIS is not delivering on its promise to all Australians with disability. The failings of Tier 2 of the scheme 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 part of a broader environment over which it has only 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 that need answers, about the relationship between the NDIS and key policy areas like health, education, employment, transport, housing, aged care, and Australia’s Disability Strategy.
This is challenging terrain for governments to navigate, but it can no longer sit in the too-hard basket.
Implications
Simply linking people with disability to mainstream services and activities skims over fundamental access and equity issues. Issues like entrenched socio-economic disadvantage and discrimination, lack of services in thin markets, the impact of the NDIS market model on community supports, and risks associated with people with disability and their families being unable to find or afford the services and support they need to maintain their wellbeing.
Until now, attention has largely been focused on issues surrounding individual NDIS funding for people with permanent and significant disability. That’s understandable. 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.
Being in or out of the NDIS has a huge financial and personal impact on people with disability and their households. The sustainability of the NDIS hinges on whole-of-government commitment to Tier 2. For the situation to change, all three tiers of government must work together. 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 work needs to start now.
Authors:
Sue Olney, Melbourne Disability Institute, University of Melbourne (s.olney@unimelb.edu.au)
Amber Mills, Social Policy and Research Centre, The Brotherhood of St. Laurence
Liam Fallon, Social Policy and Research Centre, The Brotherhood of St. Laurence
Content moderator: Deb Cleland