National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2372
Submission to the Senate Standing Committee on Community Affairs Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
I am a parent and carer to a disabled child who is Autistic and ADHD. I am also an Autistic woman myself, living with a chronic condition that impacts my everyday functioning, although I do not receive formal supports myself.
My child is currently 9 years old and has been on the NDIS since they were around 5, first entering through the EACH program. The supports they receive have been life-changing for both them and our family. Occupational therapy has helped them understand their neurodivergence, sensory needs, and nervous system challenges. Social support groups designed for neurodivergent children have helped them develop relationships and a positive autistic identity. Art therapy has supported their emotional wellbeing and helped them process difficult experiences.
I am deeply concerned about the direction of the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 and the impact it will have on disabled children and their families. In particular, I am concerned about provisions that appear to narrow access to supports, increase the discretion of the Minister, and shift more responsibility back onto families under the idea of “parental responsibility.” The supports my child receives are not luxuries. They are what make ordinary daily life possible.
Importantly, our family has been able to maintain work because of the small amount of support worker funding we receive. My child needs substantial hands-on support to manage self-care tasks, transitions, emotional regulation, and sensory overwhelm. Simple routines that many families barely think about can take hours longer in our household because of the level of co- regulation and support required.
Transitions out of the home are often extremely difficult and distressing. Getting to school can involve prolonged dysregulation, sensory distress, and emotional exhaustion for everyone involved. Despite these challenges, my child is bright, curious, and loves learning. With support, they are able to access education more consistently and participate in the world around them. Without these supports, I believe my child’s access to education would be further restricted. I also believe my own ability to remain in paid work would become unsustainable.
We are already often late to work several times a week after managing very difficult mornings. By the time we arrive, everyone is distressed and depleted. We are not a family living comfortably with excess support. We are surviving with a very small amount of help that is making the difference between coping and collapse.
I fear that if supports are removed or reframed as “reasonable parental responsibility,” the
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2372
consequences for families like mine will be severe. Parents cannot replace trained support workers, therapists, or disability supports simply by trying harder. Many of us are already at or beyond our limits.
As an Autistic woman with chronic illness myself, I am acutely aware of the cumulative toll this level of care takes. I fear losing these supports would push my own health to a point where I become further disabled and unable to function. My child’s father also lives with mental illness and high blood pressure. As a family system, we are already in constant survival mode.
I am also deeply concerned about the level of power this Bill appears to place in the hands of the Minister of the day. Decisions that shape the lives, safety, and wellbeing of disabled people should not be left to broad discretionary powers without proper safeguards, transparency, and genuine co-design with disabled people themselves. Disabled people, families, advocates, and frontline providers have repeatedly said that this Bill risks causing harm. Those warnings should be taken seriously.
I ask the Committee to recognise that early and appropriate supports do not just benefit disabled children, they protect entire families from crisis. They allow parents to remain employed, reduce burnout, improve educational participation, and support long-term wellbeing and inclusion. Removing supports does not remove disability-related needs. It simply transfers the burden onto families who are already struggling to hold everything together.
I respectfully ask the Committee to: • Reject the Bill in its current form. • Ensure any future reforms are genuinely co-designed with disabled people, families, and representative organisations. • Protect access to supports that assist disabled children with emotional regulation, sensory needs, daily living, community participation, and education. • Reject approaches that shift essential disability supports onto families under the label of “parental responsibility.” • Remove or significantly limit provisions that concentrate excessive decision-making power in the hands of the Minister. • Listen to the lived experiences of disabled people, carers, advocates, and providers about the real-world consequences these changes will have.
The NDIS has allowed my child to better understand themselves, participate more fully in life, and access support that improves their wellbeing and future. It has also helped our family continue functioning under very difficult circumstances.
Please do not take away the small amount of support that is helping families like mine survive.