Submission 2590
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 Aunty | May 2026Who I Am and My Connection to This Bill
I am writing this submission as the aunty of K, a 13-year-old girl 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. K requires 1:1 support in all environments, for her own safety and the safety of those around her.
I am a close and involved member of K’s extended family. I see K regularly. I have watched her grow, celebrated her milestones, attended family events alongside her and her support workers, and witnessed firsthand both the extraordinary care her parents provide and the critical role the NDIS plays in making their family’s life liveable. I am submitting this because the proposed amendments to the NDIS will directly and seriously harm K, her parents, and families like theirs across Australia — and I do not believe this has been made clear enough to the community or to parliamentarians.
What I Have Witnessed as a Family Member
Attending family gatherings alongside K has given me a clear-eyed view of what NDIS funded support actually looks like in practice — and why it matters so much. When K has a support worker present at a family event, something remarkable happens: K can be K. If she becomes overwhelmed or overstimulated, she can be supported to take a break. Her parents can prepare food, have conversations, and make sure K’s younger brothers are included and having a good time. Our whole family gets to be a family together.
Without that support, the reality is very different. K’s parents — and particularly her mum — spend the entire event in a state of hypervigilance: managing K’s behaviour,
toileting her, helping her communicate, monitoring her safety, and tryingsimultaneously to attend to two younger children. There is no moment of rest, no adult conversation, no opportunity to simply enjoy being part of the family. I have seen this, and it is exhausting to witness, let alone to live.
I want to be unequivocal: this is not a luxury. This is a family using funded supports to participate in the ordinary rhythms of family life that most Australians take completely for granted.
My Concerns About This Bill
Having spoken at length with K’s parents and read about the proposed amendments, I have serious concerns about what this Bill will mean for K and for families like hers:
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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 with her long-term support worker, spend time with her school friends independently, and participate in family events as described above. Cutting it in half will not save the NDIS; it will isolate K and place an even greater burden on her parents.
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The Bill gives the Minister the power to further reduce or cap any NDIS support at any time, without explanation, oversight, or appeal. For a family that has built their entire future around the stability the NDIS promised, this is deeply destabilising. There is no safety net if the Minister makes decisions that cause real harm.
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The ‘parental responsibility’ provisions in the Bill are so broadly drafted that they could be used to deny supports to virtually any child under 18, regardless of the complexity or permanence of their disability. K’s parents are already doing everything that could reasonably be asked of any parent — and more. This provision risks rendering that invisible.
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The Bill opens the door to financial co-contribution from families. K’s parents, like most families living with significant disability, already operate on a reduced household income because of caregiving demands. Expecting them to bridge funding gaps is not realistic — it is harmful.
What This Means for Our Family’s Future
K’s parents have spent 13 years planning carefully for her future — a future where she lives with dignity, has genuine community inclusion, and remains close to the family who loves her. The NDIS made that future feel possible. This Bill puts it at serious risk.
As someone who loves K, I am genuinely frightened by what the alternatives look like. I know from conversations within our extended family network, and from what other families in the Cri du Chat community have experienced, that the prospect of K living in a group home — the direction the NDIS appears to be pushing families toward — carries serious risks of abuse and neglect. The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability documented these risks in detail. They are not hypothetical.
K’s parents will not be able to care for K alone as she ages, and nor should she have to. The NDIS exists precisely so that families do not have to choose between burning out and placing a vulnerable person in an unsafe setting. This Bill undermines that promise.
My Request to the Committee
I ask the Committee to consider the real human impact of these amendments — not in the abstract, but in the lived reality of families like K’s who were told the NDIS would provide certainty, and who have planned their lives accordingly.
K is not a line in a budget. She is a teenager who loves swimming, who is finding her independence, who lights up when she sees people she loves. She is exactly the person this scheme was designed to support. I urge the Committee to recommend the removal of amendments that cut participant supports, remove appeal rights, and hand
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unchecked financial power to a Minister — and to instead direct reform toward the administrative failures that are the real source of unsustainable cost growth.
The NDIS Act states that people with disability and their families and carers should have certainty that people with disability will receive the care and support they need over their lifetime. I ask the Committee to ensure this Bill does not make that promise meaningless.
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.
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