National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1967
To the Community Affairs Legislation Committee,
Thank you for the opportunity to submit about the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.
I am an autistic adult not on the NDIS who is also a carer of three autistic teenagers with significant support needs who are NDIS participants.
I do not support the changes proposed in this bill. I am concerned about the loss of supports, increased administration burdens and loss of community participation.
My children’s father died several years ago meaning I was left a widow supporting three grieving autistic children alone. Children who are grieving and traumatised who are also disabled have different support needs than children who are grieving who are not disabled. Neurotypical children re-process grief and trauma at every developmental stage as their understanding changes. This re-processing is complicated for neurodiverse children as their development is not typical, so my children have needed immense, coordinated and intertwined supports to build their capacity to function. NDIS supports have been life changing for my children, and the choice and control of finding appropriate therapies for them has been essential. Just as not all children are the same, not all autistic children are the same, nor do they all have the same life experiences. It is essential that supports are appropriate for the individual and their circumstances and the people directly affected by this – the participants themselves, and their carers – are the best placed to inform this. I am deeply concerned about the loss of choice and control.
I can also tell you exactly what would have happened without these supports or what will happen if their capacity building supports are reduced or removed because of these changes in the bill. This is because it already happened once to one of my children.
When my son was in year 6 I knew he would struggle with the transition to high school. He does not cope well with changes to his routine and his supports. His capacity building supports were insufficient in his first plan. He was diagnosed and granted access to the NDIS a few months after my other two children and for no reason that I could understand, was provided with less than half of the supports that each of the other two were provided. My children all have the same disabilities, and have very similar levels of support needs. The only difference I could see was the timing. After several months as the tiny amount of funding he had been granted was close to being exhausted, I requested a review. However, in the internal review his capacity building supports were further reduced. In this process I had to pay for many additional reports outlining the extent of what his support needs were. I am not even convinced the NDIA read them.
I took the NDIA to the AAT. It was exhausting, and the precious months of the remaining year 6 were wasted while I was burnt out from fighting for the supports he desperately needed. And in this time my son was inappropriately supported to prepare him for the transition.
My son was granted a Legal Aid lawyer and after this happened, the NDIA offered to settle. They settlement agreed to provide everything that we had initially requested – that which the reports said were necessary. I don’t know how much time and money the NDIA spent on salaries and barristers fighting this, but I can confidently say it was more than the settled amount.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1967
But by then it was too late and so much additional damage had been done: it was already a month after he started year 7. Because of those wasted months fighting the NDIA he had already started high school and was already not coping precisely because he was not adequately prepared for the transition.
The consequences of this was that I had daily phone calls from the school for 6 months as he absconded, self harmed and threatened harm to others. All signs that he was not coping with the transition to high school, which was exactly what I said would happen if he was not appropriately supported with capacity building supports. The school was not equipped to cope with him and would insist I come and collect him. This had a huge and detrimental impact on my employment and ability to work to support my family. I am a widow with three autistic children, with no family nearby. I would have loved informal or other supports but they simply do not exist.
Now that he has the appropriate capacity building supports in place he is doing much better, but each year with a new set of teachers and a new routine he still requires substantial supports to manage the change. If they are cut, we will be back to how it was when he was inadequately supported. This is not because he is a “bad” kid. His disability makes these transitions difficult. He is getting so much better with the support that he has but I am so afraid of what will happen if they are cut again.
The social and community supports my kids have had access to have been incredibly helpful. With these, they have been able to access a specialist disability support program that allows them to learn social skills and build friendships with kids like them. They have been able to exist in a place where they aren’t the weird kid, where everyone else is just like them, and where they are all supported to learn the skills to be the best version of themselves that they can. Isn’t this what we want for all people in society? To aspire to participate and be part of our community? This has so much inherent value and their lives and the community as a whole would be dimmer without such a support in place. If social and community participation supports are cut, it is not just individual lives that will be changed, but our society as a whole. I don’t want to live in a society where disabled people are deemed less worthy because they need to be supported to participate. Participating in the community should be the right of everyone.
I do not believe the NDIS has lost its social licence. I think when people hear the stories of individuals who need support, they believe that the supports should be provided. That is the kind of society we should be. If we need to find more money to pay for it we should look at other options. We cannot balance the budget off the backs of disabled people. We cannot build a good society by cutting essential supports from the most vulnerable people in society.
That is why I do not support the changes in this bill. Thank you for the opportunity to make this submission.