National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 2246

To whom it may concern,

I am writing as someone who has applied for the NDIS twice and been unsuccessful, despite living with ME/CFS, Long COVID, and PTSD - conditions that significantly limit my ability to manage daily life independently. I am largely housebound, and I currently receive the Disability Support Pension, which I was granted without difficulty. The contrast between that process and my experience trying to access the NDIS has been stark, confusing, and deeply discouraging.

Each time I applied to the NDIS, my application was rejected on the basis of technical faults found with letters from my treating doctor and psychologist - the very professionals who know my conditions best. The process felt opaque and difficult to navigate, and I was never given a clear sense of what would actually satisfy the requirements. I am not alone in this experience. Many people with complex, fluctuating, or poorly understood conditions find themselves in exactly this position: sick enough to qualify for income support, but unable to clear the higher and less transparent bar set by the NDIS.

On the proposed changes to the definition of permanence

I am particularly concerned about the proposed changes to how the NDIA defines permanence - specifically, the requirement that participants must have tried all available treatments before being considered eligible.

I have already completed all treatments required under Centrelink guidelines for the Disability Support Pension. My conditions are not going to be resolved by further intervention. ME/CFS in particular is a condition for which there is no curative treatment; management is the realistic goal, not recovery. Long COVID similarly remains poorly understood and without established curative pathways. PTSD, while treatable, does not simply disappear, and the treatments themselves require energy and capacity that chronic illness often makes very difficult to sustain.

The proposed changes would add another layer of gatekeeping that people in my situation are poorly positioned to meet - not because we haven’t tried, but because the treatments deemed “available” may be unaffordable, inaccessible in our area, or simply not appropriate for our conditions. For someone who is largely housebound, “available” treatment in a practical sense is an entirely different thing from treatment that exists somewhere in theory.

What the lack of support means in practice

Without NDIS support, I am currently going without help for transport, cleaning, and accessing my community. These are not luxuries. They are the things that make it possible to have a life.

I am also attempting to build a small business - something that would give me economic participation and purpose within the constraints of my health. Capacity building supports through the NDIS would make this possible in a way it currently is not. Without them, I am trying to build something sustainable while running on empty.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 2246

I cannot rely on family and friends to fill the gap left by the absence of formal support. They have their own jobs, their own lives, and their own limits. The informal support network that policy sometimes assumes will catch people like me is simply not a reliable substitute for funded, consistent care.

In closing

I am asking the committee to consider what these changes mean for people who are already on the outside of the NDIS looking in - people who are genuinely disabled, who have already done everything asked of them, and who are still being turned away. Tightening the definition of permanence will not reduce the number of people who need support. It will only reduce the number of people who can access it.

Please do not make an already inaccessible system harder to enter.

Kind regards,

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