Dear Senators,
My name is . I am a single mother of four children, all of whom have disabilities and are NDS 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, able to physically care for my children.
Before the NDS, 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, rasing 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 NDs 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 NDS 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 NDs, 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 1387
he simply could not go, and weeks where attendance was a battle we consistently lost. I was terrified for my son’s life, and I carried that terror completely alone, often from my bed, unable to physically reach him, while my own body was breaking down. We had no carer, no respite, no one.
The NDIS gave [redacted: s47F - Personal privacy] consistent, in-school therapy and a support system that brought him back from the edge. He no longer talks about wanting to die. He attends school. He has hope. That is a life saved.
The Bill’s proposed power to make indiscriminate cuts to capacity building budgets threatens to strip away his behaviour support, his job coach, and the therapeutic consistency that saved him. If that happens, I know exactly where he will return: to the boy who could not attend school and who wanted to die.
M E , 40 10
E lives with Autism Spectrum Disorder (Level 1–2), ADHD, and Oppositional Defiant Disorder. His NDIS plan funds occupational therapy, behaviour support, and a support worker who assists with implementing the strategies set by his therapeutic team — building routines, managing hygiene, travel training, and getting him to school.
Today, E[redacted: s47F – personal information] school attendance is close to 100%. He is in Year 11 and, with support, is working towards finishing his education.
Before the NDIS, E was in severe crisis. He refused to go to school; his attendance fell below [redacted], triggering involvement from the school liaison officer. At home, he was violent—towards me, his chronically ill single mother, and toward his siblings, all of whom have disabilities. At school, his dysregulation was so extreme that he defecated on the school oval in a moment of anger. His meltdowns were dangerous; on multiple occasions, his classroom had to be evacuated. He tried to escape the school grounds by climbing trees and scaling metal fencing. The school could not contain him. I could not manage him at home.
We briefly accessed psychology and OT through Medicare. He improved remarkably fast. But when the sessions ran out, the progress unravelled. The violence, the dysregulation, the school refusal—it all came crashing back. We were trapped in a cycle where help was dangled just long enough to see hope, then snatched away.
The NDIS broke that cycle. It gave E consistent therapy and a support worker to implement it daily. That scaffolding turned a boy with below-75% attendance into a young man attending school almost every day. But his
aggression is still being worked on. He is in Year 11, and | am deeply afraid that without his current supports, he will not finish Year 12. If he loses his support worker, his OT, or his behaviour support, his attendance will collapse, and a young man who has fought so hard will not graduate. | cannot let that happen.
I, Ace 14
H lives with a mild learning disability, Autism Spectrum Disorder (Level 2), , Oppositional Defiant Disorder, and Obsessive-Compulsive Disorder. His NDIS plan funds occupational therapy, speech therapy, behaviour support, and a support worker.
today, H ae: enrolled in a support unit at a mainstream high school, where he has high attendance and is generally happy.
Before the NDIS, H erat refused to go to school for months. He simply could not attend. His nervous system was locked in survival mode, and no amount of pushing could get him through the school gate. The only option was to homeschool him for the remainder of Year 6. But | could only do that because of his team a€” his OT, speech therapist, behaviour support practitioner, and counsellor. They helped create a calm, supportive environment where H
could finally switch out of survival mode and allow his brain to begin learning again. This was not simple homeschooling; this was an intensive, multi- disciplinary therapeutic intervention, delivered in the only setting he could tolerate.
It worked. He successfully enrolled in Year 7. But at home, his emotional regulation is still challenging. His aggression is often triggered by his younger sister. His support worker implements the strategies that de-escalate tension and maintain calm. Without that worker, those strategies fall entirely on me a€” a single, chronically ill mother who cannot physically intervene every time conflict erupts. If his supports are cut, | fear he will return to the survival mode he was locked in during Year 6. | cannot do that again.
AEE. “ce 10
i is 10 and lives with Autism Spectrum Disorder (Level 2), ADHD, Oppositional Defiant Disorder, and social anxiety. Her NDIS plan funds behaviour support and occupational therapy. She has the most challenging behaviours of all my children, yet her funding is the most limited. She receives the least amount of support.
How This Bill Threatens Our Family
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, his 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.
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, coccurring 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.
- 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.
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Look at my children a€“ L JE ,H ,andA and see their lives as worthy of protection. They are not budget savings. They are not line items. They are four human beings who deserve the chance to learn, to feel safe, and to have a future.
That life is waiting on the other side of this Bill. I am asking as Senators, to Please do not take that from them.
Yours sincerely,