National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1367
Dear Senators,
My name is . I am a single mother of four children, all of whom have disabilities and are NDIS participants. I also live with three chronic, long-term illnesses: Myalgic Encephalomyelitis (ME), fibromyalgia, and trigeminal neuralgia. These conditions cause severe, persistent pain, debilitating fatigue, and neurological symptoms. There are days, and sometimes weeks, when my illness leaves me completely bed bound — unable to stand, unable to drive, unable to physically care for my children.
Before the NDIS, my family was in freefall. The situation became so desperate that the Department of Communities and Justice was called on me. I want to be clear: I was not a neglectful mother. I was a mother with a severe chronic illness, raising four children with disabilities alone, with no carer, no respite, and no adequate support. DCJ recognised this. They did not remove my children. Instead, they helped me access the services my children desperately needed — the very services the NDIS now provides. That call to DCJ should never have been necessary. It was a direct result of a system that left families like mine to drown before offering a lifeline.
The NDIS changed everything. It did not just fund therapies — it funded them consistently enough to work, and it delivered them in a way that worked for our family. It gave us support workers and respite, meaning that when I was bed bound, there was someone to help my children. Someone to get them to school. Someone to be present when I could not be.
I am now asking you not to take that lifeline away. The Bill before you threatens to dismantle the stability my children have fought so hard to achieve. What follows is the story of each of my four children. I ask you to read their stories and understand that these are not budget line items. These are lives.
L , Age 17
L lives with a mild global developmental delay, Autism Spectrum Disorder (Level 2), ADHD, and Oppositional Defiant Disorder. His NDIS plan funds speech therapy, occupational therapy, behaviour support, and a job coach, all of whom visit him at school.
Today, L has a 99% school attendance rate, a stable daily routine, good emotional regulation, and is genuinely happy. His job coach is helping him build a pathway to meaningful work. To anyone looking at him now, he is thriving.
Before the NDIS, L had extremely poor emotional regulation. He talked about wanting to die every single day. School refusal was high; there were days
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1367
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1367
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1367
I need the Committee to sit with that contradiction: the child who needs the most, gets the least.
A is still aggressive — towards me, towards her siblings, occasionally even towards her support workers. Her social anxiety makes the world a threatening place, and she navigates it with fight mode permanently switched on. This is what a typical morning looks like in our home: I wake at 6am and unlock the front door so a carer can let themselves in. When the support worker arrives, he takes over with the boys so I can focus entirely on getting A ready for school. One child. One mother. An entire support worker dedicated to the other three just so A can have my undivided attention for the basic task of starting the day. Without this arrangement, our mornings would descend into chaos. With it, we just barely manage.
But A funding is limited. We are constantly rationing her behaviour support hours, constantly making impossible choices about which crises to address and which to let slide. The Bill threatens to cut even this bare minimum. If her support is taken away, I am left with a question I cannot answer: how would I manage at all? I am a single mother with ME, fibromyalgia, and trigeminal neuralgia, sometimes bed bound. My other three children have significant needs. A aggression is real and present. Without her behaviour support, without her OT, without the fragile morning routine that holds our household together, I do not know how I would keep her safe, keep her siblings safe, or keep myself functioning. That is not a hypothetical fear. It is the reality waiting on the other side of these cuts.
How This Bill Threatens Our Family
I understand the need to ensure the NDIS is sustainable. But the measures in this Bill will not achieve sustainability — they will cause devastation.
· Redefining eligibility and “permanence”: All four of my children have lifelong, co-occurring neurodevelopmental conditions. Their disabilities cannot be “cured” or treated away. A rigid new functional capacity test could exclude them from the scheme entirely, or force us to repeatedly prove what we have already spent years documenting. · Power to make indiscriminate funding cuts: The Bill gives the Minister the power to cut support categories like capacity building and community participation without individual assessment. For my children, this would mean losing the very therapies and support workers that keep them in school, regulate their emotions, and keep our family safe. A 10% or 20% across-the-board cut is not an efficiency measure — it is a wrecking ball through the fragile stability we have built.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1367
· Limiting plan reassessments: My children’s needs can change rapidly. A mental health crisis, a sudden escalation in aggression, a period where I am bed bound for weeks — these things happen. The Bill’s restrictions on unscheduled plan reviews would leave us with no ability to respond to a crisis. I would be back to the days of watching my children spiral while waiting months for a review. · Cuts before alternatives are in place: The Bill anticipates shifting participants to “foundational supports” outside the NDIS. But these supports do not yet exist in any meaningful, accessible form. Removing my children from the NDIS before genuine alternatives are operational is not a transition — it is abandonment.
I am not asking for luxury. I am asking for the bare minimum that keeps my children alive, in school, and safe. The NDIS currently provides that bare minimum — sometimes just barely. This Bill threatens to take even that away.
What I Am Asking the Committee to Do
I call on the Committee to:
- Reject any provision that allows indiscriminate, across-the-board funding cuts without an individual assessment of need. My children’s supports should not be reduced by ministerial decree; they should be determined by professional assessment of what each child requires to function.
- Ensure the new eligibility framework explicitly protects children with lifelong, complex neurodevelopmental conditions such as ASD, ADHD, ODD, and co- occurring intellectual and learning disabilities. These conditions are permanent. Families like mine should not be forced to repeatedly prove what is already established.
- Guarantee that no participant loses essential supports until fully-funded, proven, and accessible foundational supports are operational in their community. Do not dismantle the NDIS before building the alternative.
- Recognise that families like mine — single-parent households, parents with disabilities and chronic illnesses, children with complex co-occurring conditions — are the people the NDIS was created to support. We are not fraud. We are not waste. We are the scheme’s core purpose.
I am terrified of returning to the life we had before the NDIS. A life where my son talked daily of wanting to die. Where another son defecated on a school oval in rage while his classroom was evacuated. Where another could not attend school at all, his brain locked in survival mode. Where my youngest daughter’s aggression consumed our household, and I had no one to help. A life where DCJ was called, not because I was a bad mother, but because the system had abandoned us.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1367