National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 109
I am the parent and carer of a young man with C4 quadriplegia and extremely high physical support needs.
The NDIS has been life-changing for him and for our family. Without appropriate supports, he would not be able to live safely, participate in the community, or have any real independence or quality of life.
I am deeply concerned about the proposed changes to the NDIS Act.
One of my biggest concerns is the proposed changes around “permanence” and requiring people to try all available treatments before being considered eligible for support. For someone with a permanent spinal cord injury, there is no cure. Yet these changes make it sound like people could be forced to continually prove their disability or pursue treatments that may be unrealistic, unavailable, unaffordable, or offer no meaningful improvement.
This is frightening for families like ours.
My son’s disability will not improve through another treatment, therapy, or medication. What improves his life is access to appropriate supports, equipment, technology, and carers who understand his complex needs.
The NDIS currently allows him to live with dignity and safety. His supports are not “extras” or luxuries. They are essential.
For example:
He requires careful blood pressure monitoring due to dangerously low blood pressure and the risk of autonomic dysreflexia, which can become a medical emergency very quickly. He depends on assistive technology and environmental controls for basic independence. Capacity building and community supports are important because isolation is a real risk for people with severe disabilities. Support workers cannot replace every piece of assistive technology. Sometimes technology gives independence, privacy, safety, and dignity in ways human support cannot. I also feel the proposed changes have not been explained clearly enough. Many participants and families are confused and anxious. It feels like decisions are being rushed without properly listening to the people who will be most affected.
What worries me most is the long-term direction. It feels as though people with disabilities are increasingly being viewed as a financial burden rather than as human beings deserving of dignity, safety, inclusion, and opportunity.
Our family understands the NDIS must be sustainable. But sustainability should not come from reducing essential supports for people with permanent and significant disabilities.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 109
If social, community, or capacity building supports were reduced, the impact would be enormous. Isolation, carer burnout, declining mental health, and preventable medical complications would increase. In many cases, removing supports early simply creates larger and more expensive crises later.
We are one of the fortunate families whose current plan adequately supports our son’s needs. But even with a good plan, we still face constant challenges navigating systems, advocating, and planning for the future. I worry deeply for families who are already struggling or who may lose supports under these changes.
I ask the Senate Committee to carefully consider the real-life consequences these proposed changes could have on people with disabilities and their families. The voices of participants and carers must be heard before any further changes are made to the NDIS Act.
The NDIS does not give my son a luxury life. It gives him a safe and dignified life.
Thank you for considering this submission.