National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1921
The NDIS is already difficult to access. On average it takes years to be approved and most applicants have to appeal a rejection at least once. I have a complex and debilitating disability, and although I desperately need support in my daily life I have not yet applied as know it will an uphill battle. Friends of mine with some of the same disabilities as me have had their condition permanently worsened during the application process due the enormous amount of work, testing requirements and stress, and some of them had to give up with nothing to show for it.
Even though the support provided can be enormously helpful, once on the NDIS the battle does not end. The supports in place always have to be defended and justified, and getting anything new that’s needed can also be a fight.
These changes propose to make it even harder to access and use the NDIS. Broad powers to make cuts to funding for categories of support, and failure to consider individual circumstances, will leave many people without what they need.
My disability is a combination of my body, my history and skills, my personality, my environment, my resources, and the people who are available to support me. I am mostly bedbound, very occasionally able to leave the house with careful planning for a medical appointment. A friend of mine with the same disability, who is technically at a more severe level than me, is able to leave his house every week or two and spend more time out of bed than me - he has a wheelchair more suited to his needs, home carers helping every day, and lives near wheelchair accessible public transport that comes almost right to his door. So in his everyday life, in practical terms, he is less disabled than me.
With regard to the ‘permanence’ changes: firstly, it is ridiculous that people have to prove their disability will never go away before they can get help with it. I know the idea is that other programs should be in place to help - but they are not. And cutting what is the only game in town hurts people. Also, requiring people to prove they have tried every treatment is a breach of human rights - bodily autonomy means being able to choose whether or not you want a medical intervention, for any reason. Having the threat of support being withheld means it’s not a free choice.
For my disability, ME/CFS, the diagnosis is mainly clinical. One of the few reliable tests that shows a strong indication that the patient has ME is CPET - an exercise stress test repeated over two days. This test is not recommended, however, as it is guaranteed to worsen the patient’s condition. ME patients have a disportionate negative reaction to exercise - called PEM - which causes a chain reaction in the body and lowers the patient’s (often very limited) total energy reserves, sometimes permanently. I have known more than one person who has agonised over whether to undergo this clearly harmful test just to get access to treatment, support or disability benefits because of inflexible systems.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1921
Similarly, there are places which erroneously recommend Graded Exercise Therapy as a treatment for ME - which has similar harms to the CPET (but greater because it goes on for longer). Despite a wealth of evidence to the contrary, numerous people have been told (and are still being told) they need to try GET before they can qualify for the disability pension. I have no doubt that this will happen with NDIS as well. And with the changes to appeals, it will be much harder to argue about being subjected to unreasonable requirements.
In an ideal world, the amount of time disabled people would spend arguing that they are disabled and need help would be as close to zero as possible. These changes are a big step away from that ideal.