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

Submission 2083

To the Committee,

I am writing as a terrified and exhausted mother. My nine-year-old son lives with Angelman Syndrome. He is non-verbal, experiences daily refractory seizures, requires PEG tube feeding on a prescribed ketogenic diet, has no safety awareness and needs 24/7 1:1 direct physical care to stay alive.

When I look at the proposed 2026 NDIS Bill, I don’t see “sustainability.” I see rules that will break my family and strip away my son’s safety.

“Parental responsibility” does not equal 24/7 life support. The Bill assumes I should absorb his care as ordinary parenting because he is nine. Managing daily seizures, full hygiene needs, and measuring stomach-tube fluids is not a standard maternal duty. It is highly specialised care that requires support beyond me.

Standard “cohort” caps will leave my family housebound (and many others). He cannot safely step outside our front door without 1:1 trained support. Cutting this funding means zero community access, trapping our entire household, including his siblings, at home and completely isolating us from society.

Wiping unspent funds penalises families for waitlists. The Bill proposes wiping unspent money every 12 months. In 2023, we were approved for a wheelchair car modification, but it took two years to complete due to provider waitlists. High-end equipment and modifications do not happen in 12 months. Unspent funds should not be removed for supply issues beyond our control.

Removing self-management is a threat to my son’s life. I choose to self-manage so I can hand-pick and train workers who know my son’s unique seizure triggers and communication cues. If forced onto an agency list with a rotating door of unfamiliar faces, issues will certainly arise. In our house, a missed seizure cue or a botched PEG feed is a direct threat to his life.

If the Bill is passed, the care gap won’t magically disappear, it will fall entirely on me. I will have no choice but to quit my job as a professional nurse to keep my son alive. The government won’t save money; it will just shift the cost directly onto Centrelink services and the state health system when burnt-out parents collapse and life-threatening errors happen.

I beg the Committee to look at the human faces behind these clauses. Please protect the flexible, individualised funding our children genuinely need to survive.