National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1755

Submission to the Senate Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

To the Committee, I am writing as a close friend of a teenager with Cri du Chat Syndrome, and I have seen firsthand how important the NDIS is for people with disability and the families around them. Over the years, I have watched inclusion and the right supports completely open up this young person’s world. With access to therapies, communication support, education assistance, and community participation, they have been able to build confidence, relationships, independence, and a genuine sense of belonging. Opportunities that many people take for granted became possible because support was there when it was needed.The NDIS matters because it recognises that disabled people deserve the same opportunities as everyone else. It is not just about funding — it is about dignity, participation, connection, and quality of life.I am concerned that the proposed changes may move the NDIS away from the individualised and evidence-based approach that makes it effective. Cri du Chat Syndrome is a rare and complex condition, and no two people experience it the same way. A standardised or restrictive system risks overlooking the unique needs of people with rare disabilities.Supports should never be determined by broad assumptions or rigid categories. Decisions must continue to be based on the individual person, their functional needs, and professional evidence. What works for one participant may not work for another, even with the same diagnosis.I have seen how inclusion changes lives. With the right support, people can communicate more effectively, participate in school and community activities, develop independence, and feel valued and connected. Without those supports, families and individuals can quickly become isolated and overwhelmed. The NDIS should continue to protect the rights, dignity, and individuality of participants. I urge the Committee to ensure that any reforms preserve personalised, evidence-based decision-making and do not create additional barriers for people with disability, especially those with rare and complex conditions.Thank you for considering this submission.Sincerely,