National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1118
My name is Savanna Robinson. I live in the Hawkesbury area of New South Wales and I have lived with Multiple Sclerosis for over 20 years. I am medically retired from teaching and now run small creative workshops in my community when my health allows. I also care deeply about the NDIS as the parent of an autistic daughter who is currently being homeschooled after severe PDA-related burnout made attending school impossible. The NDIS has a major impact on both disabled adults and disabled children trying to live safely and meaningfully in their communities.
I support the idea of improving the NDIS so it is sustainable and fair, but I am very concerned about parts of this Bill and believe significant changes are needed before it goes ahead. In particular, I am worried about the new functional capacity testing and the planned reassessment of participants from 2028 onwards.
Living with MS already means constantly proving that your disability is real, even though it is lifelong and unpredictable. At the same time, parenting a child with autism and PDA often involves repeatedly explaining and defending needs that are not always visible to outsiders. The idea of stricter reassessments and more testing creates stress and uncertainty for families already managing significant daily challenges. Many disabled people and carers are already exhausted from appointments, reports, evidence gathering, and navigating systems that often feel adversarial instead of supportive.
My own health changes from day to day. Some days I can teach a small workshop or support my family, while other days I struggle with fatigue, pain, mobility issues, or migraines. My daughter can also appear capable on the
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1118
surface while still experiencing overwhelming anxiety, distress, and burnout that affects daily functioning and education. A single assessment or “snapshot” does not capture the reality of fluctuating disabilities or neurodivergent burnout. I worry these changes could lead to people losing support because systems are focused too heavily on standardised testing and cost reduction rather than real lived experience.
I ask the Committee to recommend changes to the Bill so that people with permanent, fluctuating, and neurodevelopmental disabilities are protected from unnecessary reassessments and loss of support. The NDIS should reduce stress for disabled people and families, not add more fear and instability. Participants must continue to have strong review and appeal rights, and assessments need to properly recognise fluctuating conditions, invisible disabilities, and autistic burnout.
Savanna Robinson
I am happy for my name to be published.