NDIA Accountability Project

Cri du Chat syndrome diagnosis and reduction of social participation funding

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Submission 2018

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 Mother’s Cousin | May 2026

Who I Am and My Connection to K

I am writing this submission as the cousin of K’s mother. 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. While I am one step removed from K’s immediate family, I am very much part of her extended family, and I see her regularly at family events and gatherings.

I am writing because I have watched my cousin pour everything she has into caring for K, and because I have seen firsthand what the NDIS makes possible for their family. I am deeply concerned that this Bill will dismantle supports that are not luxuries but necessities - and that the people most affected have been given almost no time to respond to proposals that will shape the rest of their lives.

What I Witness at Family Events

Family gatherings are where I see most clearly what disability support means in practice. When K has a skilled support worker with her, the whole event feels different.K can participate - she can engage with the family, be taken outside if she becomes overwhelmed, and be supported to communicate and enjoy herself. Her mum can sit down, have a conversation, make sure her younger children are fed and happy, and actually be present as a cousin, a daughter, a friend.

I have also been at events where that support has been stretched thin or absent, and the contrast is striking. My cousin spends the entire time in a state of constant vigilance - toileting K, managing her behaviours, supporting her communication, keeping her safe - while simultaneously trying to attend to two other children and be part of the occasion. She does it without complaint, but it is exhausting to watch, and I cannot imagine what it costs her to live.

I want the Committee to understand that what I am describing is not an edge case or an unusual situation. This is every family event, every community outing, every ordinary moment that most families take entirely for granted. The NDIS funding my cousin’s family receives is what makes those moments survivable - and sometimes, genuinely joyful.

My Concerns About This Bill

Having spoken with my cousin at length and read about the proposed amendments, I have serious concerns about what this Bill will mean for K and for families like hers:

Submission 2018

  • From 1 October 2026, K’s social, civic and community participation funding will be cut by 50%, with no consideration of individual need and no right of appeal. This is the funding that allows K to attend the pool, spend time with her school friends, and be part of family life in the way I have described above. Halving it is not a minor adjustment - it is a significant reduction to K’s quality of life, and an significant increase in the burden on my cousin.
  • The Bill grants the Minister sweeping, unchecked power to further reduce any support, cap any price, or limit any service at any time, without independent oversight or any avenue for review. For a family that has planned their entire future around the stability the NDIS promised, this is deeply destabilising.
  • The ‘parental responsibility’ provisions are drafted so broadly that they risk being used to deny supports to virtually any child with disability, on the grounds that parents should be providing care themselves. My cousin already does more than any parent should be expected to sustain alone. Using that dedication as a basis for reducing funded support would be profoundly unjust.
  • The removal of appeal rights concerns me enormously. The fact that the NDIA loses the overwhelming majority of tribunal appeals tells us the problem is poor planning decisions, not families misusing the system. Removing appeals does not solve that problem - it simply removes accountability.

What This Means for a Family I Love

My cousin has spent 13 years planning carefully for K’s future — a future where K lives with dignity, close to her family, with the support she needs. The NDIS made that future feel achievable. This Bill puts it in serious jeopardy.

What troubles me most is the quiet direction the NDIS appears to be pushing families toward — group home living for adults with complex needs. Within the Cri du Chat community, families are already hearing this from planners directly. The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability documented the very real risks that exist in those settings. No family should be left with no better option than that.

My cousin will never simply be K’s mum rather than her full-time carer. She has accepted that. What she should not have to accept is being expected to carry that weight with ever-diminishing support, no right of appeal, and no certainty about what next year will bring. That is not the promise the NDIS made, and it is not good enough.

My Request to the Committee

I ask the Committee to look past the framing of this Bill as a fraud-reduction or sustainability measure, and to examine honestly what it will do to people with significant, permanent disabilities who were always at the centre of the NDIS’s purpose.

Please recommend the removal of blanket funding cuts, unchecked ministerial powers, and the elimination of appeal rights. Please direct genuine reform toward the administrative failures and pricing decisions that have driven unsustainable cost growth - not toward the families who need this scheme most and have planned their lives around its promises.

Submission 2018

K is thirteen years old. She has a whole life ahead of her, and a whole family around herself who wants it to be a good one. I ask the Committee to ensure the Government keeps its promise to the same.

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 3