National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2409
I’m writing in regards to the proposed changes to the NDIS. I am extremely concerned about the impact of these changes for disabled people / people living with a disability.
I live with ME/CFS, a debilitating and disabling neurological condition. I have had ME/CFS for more than 35 years, though proving ‘permanence’ to the NDIA was an issue even when I applied in 2020. The proposed changes will make it even harder for people with my condition, who desperately need the NDIS, to be accepted and receive the support they desperately need.
These are the main issues I have with the changes. I wish I had the energy to detail my opposition to all the changes, but due to my disability, that’s simply not possible. Like everything in life, I have to focus only on the key things.
Definition of permanent disability - ‘appropriate treatments’ - the NDIA has a history of rejecting people with ME/CFS based on not having tried all appropriate treatments. The problem is, they refuse to provide a list of what they consider to be appropriate treatments and don’t accept detailed medical reports that state all treatments have been tried, or explanations of why they are not appropriate. Further restricting the concept of appropriate treatments is unconscionable - how is a treatment appropriate if it is unsafe for an individual and their personal circumstances, or inaccessible due to location, cost or any other reason?
Functional capacity - ‘standardised assessment tools’ - there is no way that standardised assessment tools can adequately encompass the enormous breadth of disability. I live with a condition that remains grossly misunderstood and underestimated by government, medical and allied health professionals and the general public. It is simply not possible that a general assessment tool will properly take into account the nuances that come from living with ME/CFS. Even worse, these assessment tools will not be administered by people with appropriate or relevant qualifications.
Social and community participation - ‘cuts to funding’ - living with severe ME/CFS means I am house bound. That means, I rarely leave my house and then, it’s only for necessary appointments or errands. I have never been able to use this funding to get out and socialise or be an active member of my community, my disability simply doesn’t allow me to do that. However, I use this funding for in-home support, as do many people with ME/CFS (and probably other disabilities too). I am under-funded for my day to day at home support. If I lose social and community participation, my quality of life will suffer. Additionally, funding is generally being cut across all categories so at my next plan review, if I lose funding for activities of daily living, plus losing social and community participation funding, I don’t know how I will survive.
When I was approved for the NDIS in 2020, I was so relieved. NDIS meant the ability to stay living independently in my own home; I was able to have my dog walked a few times a week which meant I was able to take care of him; I had the reassurance that if my condition worsened, I would be able to access more support. However, the last 4-5 years has been non-stop stress and uncertainty. I live with the daily fear that my plan will be reviewed and funding stripped. Even worse, I live with the fear that my eligibility will be reassessed and I will be kicked off - not because I am not eligible, but because someone has incorrectly assessed my level of disability and impairment, or decided that I haven’t tried a treatment, but won’t tell me what that treatment is.