National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2689
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 Great Uncle | May 2026Who I Am
I am writing as K’s great uncle. K is 13 years old and was born with Cri du Chat syndrome — a rare genetic condition causing severe intellectual disability, significant communication delays, complex behaviours of concern, and high physical support needs. She is part of our extended family and someone I see regularly.
I am writing to this inquiry because I am concerned about what the proposed amendments to the NDIS will mean for K and for the many Australians in similar circumstances. Extended family members like me are not often heard in these processes, but we see things. We are at the family gatherings, the celebrations, and the ordinary moments that reveal what funded disability support actually means in practice.
What Disability Support Looks Like From Where I Stand
Over the years I have seen K grow from a small child into a young teenager with a strong personality, a love of music, and a fierce desire to be included in whatever the family is doing. I have also seen what it takes to make that inclusion possible — and how much of that work falls on her parents, particularly her mother.
When K has skilled, consistent support in place, the whole family benefits. At gatherings, she can participate. Her parents can be present for their other children and for the extended family. When that support is not there, the contrast is stark. K’s mum spends the entire time managing K’s needs alone, and the rest of us watch, helpless to assist in the way that a trained support worker can.
What this Bill proposes to cut is not a luxury. It is what makes an ordinary family life possible for an extraordinary family.
My Concerns
The elements of this Bill that trouble me most are:
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A blanket 50% reduction in community participation funding from 1 October 2026, with no individual assessment and no right of appeal. This is blunt, indiscriminate, and will make K’s life smaller.
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The concentration of sweeping, unchecked power in the hands of the Minister to reduce any support, cap any price, or limit any service without parliamentary scrutiny or avenues for review. This is not responsible stewardship of a scheme that affects the most vulnerable Australians.
Personal Submission — NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 | Page 1
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2689
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Provisions that characterise parental care as a substitute for funded support — effectively using the dedication of parents as a reason to withhold assistance. K’s parents are already doing more than any parent should have to sustain alone.
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The removal of appeal rights for funding decisions. If the NDIA makes a decision that causes harm, families must have a way to challenge it. Removing that right is removing accountability.
My Request to the Committee
I ask the Committee to scrutinise this Bill carefully and honestly. It is being presented as a fraud-reduction and sustainability measure. In practice, it will significantly reduce the supports available to people with the most significant and permanent disabilities — the people this scheme was always designed to serve.
Please recommend the removal of blanket funding cuts, unchecked ministerial powers, and the elimination of appeal rights. Please ensure that reform is directed at the real causes of cost growth, and not at the families who need this scheme most.
The NDIS Act promises people with disability that they will receive the care and support they need over their lifetime. K is 13. She has a long lifetime ahead of her. I ask the Committee to make sure that promise is honoured for all of 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.
Personal Submission — NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 | Page 2