NDIA Accountability Project

Son's profound and permanent disabilities require constant supervision

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

Submission 3944

Submission to the Senate Community Affairs Legislation Committee

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

Submitted by: Parent and full-time carer of NDIS participant

Email: Phone:

Introduction

Thank you for the opportunity to make this submission. I am the mother and full-time carer of my son, , who has profound and permanent disabilities. is non-verbal and lives with autism, 11q13.4 deletion syndrome, moderate to severe intellectual disability, severe anxiety, hip dysplasia requiring multiple surgeries, cataracts, and is a survivor of childhood leukaemia after two bone marrow transplants. cannot speak for himself. As his mother and lifelong advocate, I am making this submission to ensure his voice is represented during consideration of this Bill. He requires support with almost every aspect of daily living. He cannot safely shower,dress, prepare meals, manage his personal hygiene or access the community independently. He has no awareness of danger and requires constant supervision.

Why these supports matter

I provide care for every day. His disability affects every aspect of our family’s life. The NDISis not simply a funding program to us—it is what allows to safely participate in thecommunity and allows me to continue caring for him at home. I cannot safely take into thecommunity on my own because of his severe anxiety, unpredictable behaviours and lack of dangerawareness. His NDIS-funded support workers are essential. Without them, would spendmuch of his life isolated at home.

Concerns about the Bill

I support ensuring the NDIS remains sustainable. However, I am concerned about changes that could reduce participant protections, limit independent review rights, increase unnecessary reassessments for permanent disabilities, or make it easier for essential supports to be reduced without appropriate oversight. For families caring for people with profound and permanent disabilities,certainty and transparency are essential.

      's lived experience

Throughout his life has faced extraordinary challenges. He survived childhood leukaemia after two bone marrow transplants, underwent multiple surgeries for hip dysplasia, and lives with lifelong disabilities. There have been occasions when his anxiety has escalated into severe behavioural distress. During one incident he accessed a kitchen knife while distressed. Thankfully no one was seriously injured, but it highlighted why constant supervision and appropriatesupports are essential for his safety and the safety of those around him.

Recommendations

I respectfully ask the Committee to:

  • Protect participants with profound and permanent disabilities.
  • Preserve independent review rights.

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

Submission 3944

  • Ensure significant NDIS changes remain subject to appropriate parliamentary scrutiny.
  • Continue recognising community participation as an essential disability support.
  • Avoid unnecessary reassessments where disabilities are permanent.
  • Ensure participants do not lose essential supports without appropriate safeguards.

Closing

When considering this legislation, I ask the Committee to remember that every decision made in Parliament has a direct impact on real people. For , these supports mean safety, inclusion and dignity. My hope is that the NDIS remains sustainable while continuing to guardianship of Australians with the highest and most complex support needs. Thank you for considering my family’s experience.

Sincerely,