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

Submission 1892

Personal Submission to the Senate Community Affairs Committee

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

Submitted by: K’s Cousin | May 2026

Who I Am and Why I Am Submitting

I am writing this submission as K’s cousin. K is 13 years old and was born with Cri du Chat syndrome, a rare genetic condition that causes severe intellectual disability, significant communication delays, complex behaviours of concern, and high physical support needs. She is my family, and I have grown up alongside her.

I am submitting because this Bill will harm K and others like her, and because I think it matters that the Committee hears from the people who are part of a person’s everyday life — not just their parents and carers, but the extended family who loves them and witnesses what their life actually looks like.

Growing Up Alongside K

I have always known K. Growing up alongside her has shaped how I understand disability, community, and what it means to truly include someone. K is funny, determined, and full of personality. She also needs a lot of support — support that does not stop, cannot be paused, and requires skill, patience, and training to provide well.

I have seen our family at events with and without K’s support workers, and the difference is significant. When K is supported well, she can participate. She can be part of what is happening. When that support is not there, the weight falls on her mum, and the rest of the family watches helplessly as she manages alone. That is the reality this Bill, if passed, will make permanent.

I have also seen K at her best — excited about her friends, proud of her independence, happy to be included in the world. The community participation funding that this Bill proposes to cut in half is what makes those moments possible. It is not a luxury. It is what allows K to be part of life.

What Concerns Me About This Bill

I am not a policy expert, but I have read enough about this Bill to be genuinely alarmed. The things that concern me most are:

• The 50% cut to community participation funding from 1 October 2026 has no flexibility for individual need and no right of appeal. For K, this will mean less time in the community, less time with her friends, and more of the burden falling on her parents.
• The Minister is being given the power to make further cuts to any support, at any time, with no accountability. That is not a safety net — it is a trapdoor.

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

Submission 1892

• The ‘parental responsibility’ provisions suggest that parents should be providing the kinds of support K’s mum provides every day. But K’s needs go far beyond what any parent can reasonably be expected to manage alone, indefinitely, without burning out.
• Removing appeal rights means that if the NDIS gets a funding decision wrong — and the evidence shows they often do — families like K’s will have no way to fight back.

My Request to the Committee

K is my family. I want her to have a good life — with friends, independence, community, and the knowledge that she is valued. The NDIS, at its best, makes that possible. This Bill, if passed without significant amendment, will take much of that away.

I ask the Committee to recommend the removal of provisions that cut participant supports, strip away appeal rights, and hand unchecked power to a Minister. Please direct reform at the real problems — the administrative failures and pricing decisions that have driven cost growth — not at the individuals and families who were always supposed to be at the heart of this scheme.

The NDIS Act promises people with disability certainty that they will receive the care and support they need over their lifetime. K deserves that certainty. Please protect it.

Note on Publication

The author of this submission requests that their name not be published. The submission may be published in de-identified form. Reference to ‘K’ is used throughout to protect the participant’s privacy.