NDIA Accountability Project

K’s grandmother's concerns regarding cuts to community participation funding and potential group home placement

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

Submission 1913

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 Grandmother | May 2026

Who I Am

I am writing this submission as K’s grandmother. 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 requires 1:1 support in all environments for her own safety and that of the people around her.

I am a close and involved member of K’s life. I see her regularly and I am part of the extended family network that surrounds her. I am submitting because I am deeply worried about what this Bill will mean for K’s future, and for the family who loves and cares for her.

A Grandmother’s Perspective

When K was born and diagnosed at three months old, our family faced the unknown together. In the early years, we worried constantly about how K would be supported as she grew - how her parents would manage, how she would access the therapy and care she needed, and what her life would look like as an adult. When the NDIS came, it felt like a genuine turning point. It told us that Australia had made a commitment to people like K - that she would not fall through the cracks, and that her family would not be left to manage alone.

I have watched K’s parents pour everything into her care - and I have watched them do it with less support than they need. The funded supports they do receive allow K to have a life that includes her community, her friends, and her extended family. I have seen how much it means to K to participate in family gatherings, to go to the pool with her support worker, to spend time with her friends. These are not extras. They are what makes a life.

I have also seen what it costs her parents when those supports are not enough. K’s mother carries an enormous weight. She always will - that is the reality of being the parent of a child with complex, permanent needs. But the NDIS was supposed to ensure she did not carry it alone. This Bill risks taking that away.

My Concerns About This Bill

I am not accustomed to writing to government, but I feel I must. The things that concern me most are:

  • From 1 October 2026, K’s community participation funding will be cut by 50% — with no ability to appeal based on individual need. This funding is what

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

Submission 1913

   allows K to be part of the community and part of our family in a meaningful
   way. Cutting it in half will make her world smaller.
  • The Bill gives the Minister the power to further reduce or cap any support at any time, without explanation or oversight. For a grandmother, knowing that everything K’s parents have planned for could be undone overnight by a ministerial decision is deeply frightening.
  • The Bill’s suggestion that parents should provide more of the care themselves does not reflect the reality of what it means to care for a child with K’s level of need. Her parents already give everything they have. Expecting more, without support, will not end well for anyone.
  • The prospect of K being pushed toward group home living as an adult terrifies me. The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability documented what can happen in those settings. No grandmother should have to live with that fear for their grandchild.

My Request to the Committee

I ask the Committee to hear the voices of families like ours — people who love someone with disability and who can see clearly what this Bill will take away. K was born into a world that, at its best, was beginning to value and include people like her. I do not want to see that progress undone.

Please recommend the removal of amendments that cut supports, remove appeal rights, and concentrate power over disability funding in the hands of a single Minister without accountability. Please ensure the NDIS remains what it was always meant to be: a guarantee that people with disability will receive the support they need for their whole lives.

K deserves a good life. Her parents deserve support, not an ever-increasing burden. And as her grandmother, I deserve to know that the country I live in will take care of her when I am no longer able to.

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.