The NDIS is likely to dominate sector-wide and public discourse about disability for the foreseeable future. And there is nothing surprising about this. The Scheme is exciting, terrifying, miraculous, disastrous, disappointing and groundbreaking. But it is also important that we remember- it is not everything.
The Australian Institute of Health and Welfare (AIHW) estimates that 89% of people with disability will not be eligible for the NDIS. There are two main reasons people under 65 will be rejected from the Scheme: either their disability is deemed not permanent or not significant. AIHW estimates that approximately 36% of people with profound disabilities will not be eligible for the NDIS. In these cases, it is probable that the person has a disability that is not likely to be permanent or that they cannot prove is likely to be permanent. Many people with psychosocial disabilities and chronic illnesses will fall into this category. My own condition, Myalgic Encephalomyelitis (ME/CFS), is a prime example. Despite a significant number of people with ME being unable to leave their bed or home, most find they are deemed ineligible for NDIS because the Agency (very controversially) does not recognise the condition as likely to be permanent. Other people will have disabilities that are not deemed significant enough to warrant eligibility to the Scheme. However, many of them would benefit from some support, albeit to a lesser degree, particularly if they want to enter or remain in the workforce.
As a sector, we would be doing our own missions and values an extreme disservice if we fail to move our efforts and dialogues beyond the 11% of people with disability who are NDIS eligible. Our community is far broader than that. Moreover, as a society we cannot reap the insurance benefits of the Scheme if 89% of people with disability receive no support.
The way things currently stand, people with disability who do not meet the NDIS eligibility criteria might end up far worse off than they were before the rollout of the Scheme. A well-publicised and unfortunate byproduct of the NDIS has been funding cuts from other disability programs. The most notable example has been in NSW, where there are currently no state-based disability supports.
Former NDIA Director Bruce Bonyhady has addressed this issue by evoking the image of the NDIS as a support oasis in the desert. When such a disparity exists, it forces people to exaggerate the impact of their disability in order to qualify for any support at all. This outcome places extreme pressure on the sustainability of the Scheme. Others will find themselves required to live without supports they desperately need, either by relying on informal support networks or drastically sacrificing their own quality of life. None of these options should be considered acceptable to the Australian public or the disability community.
What is available?
So what should you do when you supporting people who are not eligible for NDIS? There are services available designed to support the 89%. However, I warn you not to get your hopes up. They are neither numerous or comprehensive, and all of them are somewhat problematic.
Local Area Coordinators (LACs)
LACs should be the first port of call for all people with disability searching for support. Contractually, they are obligated to offer some support to people who are ineligible for the NDIS. They should be able to connect people to any mainstream services, State government programs, local councils or charities. If there are supports available in the local community, you would hope the LACs would know how to find them. The problem is: we all know that the LACs are under enormous time pressure to write NDIS Plans. We would be kidding ourselves if we imagined that supporting people to find services outside of the Scheme is ever going to be a priority.
Continuity of support
All Governments have made a commitment to ensuring that continuity of support arrangements are put in place for people found ineligible for the NDIS who were previously receiving supports. Unfortunately, progress towards achieving this goal has been varied. The Commonwealth Government has implemented a Continuity of Support Program, but it is only for former clients of State-based services who are found ineligible because they are over 65 (or over 50 for Aboriginal and Torres Strait Islander people). They have also put in place continuity of support arrangements for 15 of the 17 federal disability programs that will be transitioning to the NDIS. At a State level, progress is much more patchwork, if in many cases non-existent. Of course, the major caveat with any of these arrangement is that they will only be applicable to people who were previously receiving government disability supports. Anyone with a newly acquired disabilities, or who was not even born when the NDIS rolled out, will not be eligible for any of these services.
It might sound strange, but younger people who are not eligible for any other disability services may be able to access Aged Care services. To do so, they need to provide evidence that they have exhausted all other options. Naturally, this is not an ideal solution for anybody. Aged Care services are quite different in design from disability services and often require a co-payment. This arrangement also places an unfair strain on the already struggling Aged Care budget. When exploring this option, you do kind of get the impression that Aged Care is acutely aware of this and is a bit bitter about being forced to offer the service. The online information about the service is brief and hard to find. The website also talks a lot about finding other "more appropriate" services. But for some people, this might just be the only way they will be able to receive any support.
I currently rely on two hours of in-home support and about three hours of informal support a week. This support enables me to work part-time, pay taxes and be an all round good citizen. I pay for it out of pocket, by which I mean out of my parents’ pockets (thanks Mum and Dad). But not everyone has this privilege. To me, this demonstrates the great value that can come from even a comparatively tiny amount of support. With the NDIS, Australia made a promise to invest in people with disability. It is time we kept that promise to all people, including the 89%.