National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1260
Senate Submission: NDIS Amendment (Securing the NDIS) Bill 2026
Date: 27 May 2026
About Our Family
I am writing as the primary carer of my daughter, who is twelve years old and was diagnosed with Autism Spectrum Disorder (Level 2), ADHD, severe separation anxiety, and trauma-related school refusal (school can’t). She is also being assessed for a PDA (Pathological Demand Avoidance) profile.
After three and a half years of navigating the system, seeking diagnoses, collecting evidence, attending appointments, being turned away, trying again, we received her diagnoses and were accepted onto the NDIS approximately two months ago. For the first time in years, we had hope. Real, tangible hope that she would receive the support she needs, and that our family might begin to recover.
This Bill threatens to take that hope away before it has had any meaningful impact on our lives.
Our Daily Reality
My daughter has not been able to leave my side for almost two years. The impact of her combined diagnoses, autism, ADHD, trauma, and severe separation anxiety, means that I am her sole source of safety. I am with her twenty-four hours a day, seven days a week. I can count on one hand the number of times I have been more than ten minutes away from her in the past two years.
She cannot attend school. She is not refusing, she is unable. School can’t is a recognised response to a nervous system that has been pushed beyond its capacity to cope. We now homeschool at home, which I manage around her needs and on her terms.
My husband works full time, which is a financial necessity for our family. In addition to his paid work, he is actively involved in supporting our other daughter, and together we are also providing ongoing care for both sets of ageing parents. He is stretched to his absolute limit. The demands on him leave no meaningful capacity to absorb additional primary caring responsibilities for our daughter with disability.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1260
Because of my daughter’s separation anxiety and her need for a consistent, safe attachment figure, the responsibility for her day-to-day care falls almost entirely on me. I have had to significantly reduce my paid work as a result. I work from home for approximately eight to ten hours per week, and I struggle to sustain even that. Our household income has collapsed. We live week to week.
I want the Senate to understand: the level of care I provide is not parenting. It is round-the-clock disability support, delivered by one person, without a break, without respite, and without adequate financial support. It is not sustainable. It was never meant to be permanent. The NDIS was supposed to be part of the answer.
Our Concerns About This Bill
- Reassessment Under the New Eligibility Framework (s9B)
My daughter’s disabilities are complex, intersecting, and in some contexts, invisible. ASD Level 2 with a PDA profile means that her presentation can vary enormously depending on her environment, her nervous system state, her sense of safety, and who is in the room. On a good day, in a calm one-on-one setting with a trusted adult, she may appear to be coping. She is not. She is masking. She is spending every resource she has to appear functional, and the cost of that comes later, sometimes hours later, sometimes days.
I am deeply concerned that a standardised functional capacity assessment tool, administered by someone unfamiliar to her, in an unfamiliar setting, would capture a snapshot that bears no resemblance to her actual daily functioning. It would not capture the two years she has been unable to leave my side. It would not capture the school can’t, the trauma, the separation anxiety, or the cumulative weight of co-occurring conditions. It would not capture what our life actually looks like.
We do not yet know what this tool will be, who will administer it, or what evidence we will be permitted to provide. That uncertainty alone is causing significant distress in our household. After three and a half years of fighting to be heard, we are facing the very real possibility that an algorithm or a standardised process will undo what our team of specialists has spent years documenting.
My daughter has only been on the NDIS for two months. She has not yet had time to access the supports, build relationships with providers, or demonstrate the difference that funded assistance can make. And yet she may be reassessed and found ineligible under a framework that does not yet exist, using a tool that has not yet been released.
- Increased Emphasis on Parental Responsibility
I want to speak plainly about this section of the Bill, because I think it needs to be said clearly.
I already provide an extraordinary amount of care. I have given up my career, my income, my independence, my social life, and my ability to leave my own home freely. I have done this willingly, because she is my daughter and I love her and there was no other option. But I want the Senate to understand that what I am doing is not typical parenting. It bears no resemblance to the support a neurotypical child of the same age would need from a parent.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1260
My husband is working full time to keep our family financially afloat. He is also supporting our other daughter and helping to care for our ageing parents. There is no slack in our family system. There is no other adult who can step in. The informal support network that this Bill appears to assume exists simply does not exist in the way that is being imagined.
The Bill proposes that the NDIA must consider what level of support is typical for a child of the same age before funding additional support. A typical eleven-year-old does not require their parent to be present every minute of every day. A typical twelve-year-old can go to school. A typical twelve-year-old can spend time with grandparents, attend a birthday party, go to a class. My daughter cannot do any of these things right now. The comparison is not valid and should not be used as a basis for reducing what is funded.
If the Government’s position is that parents should absorb more of this care before the NDIS steps in, I would ask: what happens when the carer collapses? What happens when the parent’s mental health, physical health, or financial situation deteriorates to the point where they can no longer provide care? Who pays for that? Who cares for the child then? Reducing formal supports does not reduce the need. It transfers the cost, to families, to the health system, to emergency services, and ultimately to a much more expensive crisis response.
I cannot absorb more. I am already at capacity. I have been at capacity for two years.
- Plan Reassessment and Appeals Becoming Harder (s48A)
We have only just received our first NDIS plan. We are two months in. We have not yet had the opportunity to understand what works, what doesn’t, and what we need more of. For a child with a PDA profile and trauma history, building trust with providers takes time. Support needs change as a child grows and as their understanding of their own disability develops.
The proposed restrictions on requesting plan reassessments deeply concern me. Life with a child like my daughter does not follow a predictable schedule. Circumstances can change rapidly, a provider relationship breaks down, her needs escalate, I become unwell, our informal supports change. The idea that reassessments will only be available in narrow circumstances, assessed over a 90-day window, with limited rights of review, feels completely disconnected from the reality of our lives.
I am also concerned that only the participant, plan nominee, or child representative will be able to request reassessment, removing the ability for a plan manager or support coordinator to initiate this on our behalf. As a carer who is managing my daughter’s needs around the clock, managing my own health, managing our finances, supporting our other daughter, and supporting ageing parents on both sides of the family, having to navigate this process alone is a real and serious barrier.
What I Want the Senate to Know
We spent three and a half years trying to get help. Three and a half years of appointments, assessments, waitlists, rejections, and advocacy. We were told repeatedly that we didn’t quite meet the threshold, that we needed more evidence, that we needed to try other avenues first.
Two months ago, we finally got through the door.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1260
This Bill, as currently drafted, risks closing that door again, on us, and on thousands of families like ours who are only just beginning to access the support they need. The assessment tools are not yet designed. The foundational supports meant to replace NDIS access for those who are exited do not yet exist. The rules are not yet written. And yet the framework is being legislated now, with our children’s futures attached to it.
I am not asking for unlimited funding or a system without accountability. I am asking for a system that sees my daughter as an individual, not a data point, not a budget line, not a cohort. I am asking for a system that accounts for the reality of fluctuating, complex, intersecting disability. And I am asking the Senate to slow down, to get this right, and to not remove supports from vulnerable children and exhausted families before there is anything to replace them with.
My daughter finally has hope and so do we. Please don’t take it away.
Parent and Primary Carer
Adelaide, South Australia
A note on this submission: This submission was written from personal experience. I am not a policy expert or lawyer. I am a parent who has lived this, and I ask that my evidence be received in that spirit.