National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1191
Submission to the Senate Inquiry into the NDIS Legislation Amendment (Getting the NDIS Back on Track No. 1) Bill
I am a parent of three boys. My eldest son is 15 years old and has Autism Spectrum Disorder (ASD); he has been an NDIS participant for a number of years. My middle son has ADHD and is not on the NDIS. My youngest son also had ASD and was an NDIS participant for the last two and a half years of his life before he passed away. I write this submission from the perspective of a parent who has lived with disability support — and without it — and who knows firsthand what the difference means.
What the NDIS has meant for our family Before the NDIS existed, we self-funded my eldest son’s therapy. It was financially stressful and emotionally exhausting. When he was uncooperative during sessions, I found myself feeling stressed and angry — not because of him, but because of the cost. Every missed session, every difficult day, carried a financial consequence. That stress affected the therapeutic relationship and, I believe, the outcomes.
When we were able to access NDIS funding, everything changed. We could commit to weekly sessions without the weight of cost hanging over every appointment. The stress lifted, and with it, so did his cooperation. Therapy became something we could invest in properly, and the results followed.
My eldest is now 15. His ASD has a real and daily impact on his life. He cannot simply be enrolled in mainstream extracurricular activities — they are not designed to meet his needs, and many will not accommodate him. The NDIS does not fix this, but it means he has access to supports that help him participate in life in ways that would otherwise be out of reach.
The risk of penalising progress With my youngest son, we had the benefit of experience. We identified his ASD earlier and began speech therapy sooner. After years of consistent support, he developed strong communication skills. But this created a painful paradox: his pre-school assessment showed functional levels that were too high to qualify for an ASD specialist school placement in Victoria. The very supports that helped him had, in a sense, counted against him.
My youngest son passed away while he was still a participant. I am grateful that he had access to the NDIS in his final years. The funding meant he could access the supports he needed and that our family was not carrying that burden alone during an already difficult time. That access mattered. I do not want other families to be denied it.
I am deeply concerned that the same dynamic — where progress is penalised — will play out under the proposed changes to the NDIS. If participants are required to demonstrate
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1191
ongoing functional limitation in order to remain eligible, and if successful early intervention results in better assessment outcomes, then families will be caught in an impossible position. The supports that work become the evidence used to remove them.
The proposed changes to the definition of permanence The proposed changes that would require participants to try all available treatments before being considered eligible are alarming. Treatments that are technically “available” may not be accessible — they may be unaffordable, on long waiting lists, or simply not available in a participant’s area. Applying this standard risks excluding people who have real, ongoing disability-related needs but whose circumstances make accessing every possible treatment unrealistic.
The human cost of reviews and assessments I want to raise something that is rarely spoken about in policy discussions: the impact of repeated assessments on participants and their families.
As a parent, I want to focus on the positives. These are my much-loved children. But the NDIS plan review process is genuinely distressing. It requires you to document, in detail, everything your child cannot do. My son is becoming more aware of his differences. I worry about what repeated, detailed assessments of his limitations will do to his sense of self, and to his mental health. More testing is not a neutral act. For young people who are already navigating the challenges of disability in adolescence, it carries real psychological risk.
Closing remarks My family’s experience is not unique, but it is real. The NDIS has made a profound difference — not just practically, but in the quality of relationships, the reduction of stress, and the ability to focus on what matters. My youngest son was able to access support in his final years because the NDIS existed. I do not want other families to lose that.
I urge the Committee to carefully consider the human impact of these proposed changes before they are locked into law.