National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3074
Submission on the NDIS Amendment Bill
I am the sibling of someone who currently receives NDIS funding. Before they received this funding, I was also an unpaid carer for this person.
I believe and support that the NDIS needs reform to remain sustainable however I strongly oppose this Bill in its current form.
Reform should not come at the cost of support for disabled people as I am concerned will happen with this Bill. Changes to the NDIS should only happen after genuine consultation and co design with the disability community.
I have very real concerns about the proposed changes to eligibility and assessment.
Because my Brother has an ultra rare disease there isn’t a significant amount of peer reviewed published research on his disease and the associated impairments it causes. It will be a much larger burden on him and his medical team to prove that any impairments are caused by the disease, which is the primary condition he currently has access to NDIS funding for. There is no known cure for the disease. It is a genetic and degenerative disease meaning he will not recover and his disability will only increase as he ages.
In some cases, we may not be able to provide substantial proof to the NDIA that the supports he requires are to meet needs that arise directly from his impairment. Again, that is because he has an ultra rare disease that has little published peer reviewed research on it and not because these supports don’t provide benefit. We have already had significant trouble with this issue in the past but I fear that it will only be worse if the proposed changes to eligibility and assessment happen.
Intellectual disability and neuro developmental conditions are believed to be caused by his disease and they contribute to my brother’s overall level of disability. His disability causes these conditions and there is significant interplay between them. His neuro developmental conditions impact his ability to manage the impairment of his physical disability and vice versa. They all need to be taken into account to provide a full picture of his overall impairment. I am greatly concerned that these may be considered impairments in their own right, assessed separately to his main disability, and that he would not meet access for them due to proposed changes. If this happened he would not have the level or type of support needed to live with dignity and autonomy.
Additionally because of the intellectual disability and neuro development conditions, again which are directly due to his disease, he needs support to be able to clearly communicate his needs. I have real concerns about the proposed changes to assessments and that he will face significant barriers in communicating his impairments and needs and will not be assessed appropriately.
I also have significant concerns about reduction of funding and subsequent loss of support.
Because of the NDIS funding my brother receives, my dad is able to care for my Mum who also has full time care needs. If my brother’s funding was reduced or cut completely then that would increase the caring role of my dad. My dad is currently 64 and only getting
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3074
older. He manages caring for my mum and also looking after the house because my brother has adequate support funded by the NDIS. I believe if this funding was reduced or cut then the additional support my dad would need to provide would increase the burden on my dad to the point it would put his health at risk and in turn put both my mothers and brothers health at risk.
Before my brother received NDIS funding I was living at home and was providing a significant amount of care to both my brother and my mother. This led to severe carer burnout and I had to leave the caring role for my own health and well being. If my brother’s funding is reduced I have real concerns that I will have to return to the caring role and, alongside my father, become the full time support for my brother and mother. I myself have significant health issues that cause fluctuating disability and because of them are currently unable to work or pursue education. Maintaining my health and dealing with constant medical appointments and the associated admin is a full time role for me and I honestly believe that my physical and mental health would be at significant risk if I was to take on the caring role for my brother and mother again.
My caring role in the past has been a barrier to paid employment for me and I believe if I had to take the role on in the future due to funding cuts that I would be unable to be employed at a level that enabled me to support myself and would have to rely on Government payments. In this case the costs saved by the Government from cutting the funding from my brother’s plan would be replaced by needing to pay Government welfare funds to support me in my caring role for him.
I want the committee to understand that any reduction or loss of funding to my brother’s plan will not just significantly negatively impact him but impact my whole family and our health. Reduced funding would lead to a significantly increased reliance on an already overburdened health system by not just one, but four people. It will also lead to increased reliance on other Government payments and services to ensure that we were able to support him. There would likely be no savings gained as the cost to the Government would quickly show up elsewhere.
I also want the committee to understand that my brother is a human being that deserves to live his life with dignity and autonomy, just like anyone else. That he is not a burden on the economy. He is loved deeply. And as much as it may sound like a cliché, I know the world is a better place with him in it. And he has fought unthinkable and ongoing life or death battles to remain here. I want the committee to know that he deserves to live. And that ultimately any reduction in his funding could contribute to a loss of function and increase in impairment that would shorten his time on earth. This isn’t just about ensuring his ability to access the community for a coffee, which I should add he is absolutely entitled to as any of us are, this is about keeping him alive and enabling him to have the best life he can while he can.
Because these concerns and the general concern that appropriate alternative supports are not, and will not be available to support my brother, I am against this Bill.