National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1664
Submission to the Senate Inquiry into the NDIS Amendment Bill / NDIS (Securing the NDIS for Future Generations) Bill
I am the parent of an eight-year-old girl with Autism, and I am deeply concerned about several aspects of the proposed amendments to the NDIS Act.
For the sake of brevity, I am focusing on two areas that I believe will have a potentially devastating impact on my daughter and other children and young people with invisible disabilities:
● the move from diagnostic eligibility to functional capacity-based assessment ● the proposal to grant the Minister power to remove or reduce whole funding categories
I am sharing our family’s story because I believe context is essential. In much of the public debate about the NDIS, context has been replaced by the language of “sustainability”, and it is easy to forget that we are talking about children and families, not figures on a spreadsheet.
My daughter—whom we affectionately call Sparkles—is eight. She is bright, creative, funny, and proudly neurodivergent. She is also autistic with a PDA profile and ADHD. The supports she has received through the NDIS have not only helped her development, they have been essential to our family’s ability to function.
We first engaged with Early Intervention when she was three, after significant regression in speech and increasing difficulties with regulation, transitions and daily routines. At that time, childcare drop-offs could be impossible. Toilet training had not been achieved. Meltdowns were frequent and intense. Community activities often ended in distress or unsafe behaviour, sometimes requiring us to remove her from situations while she was overwhelmed and unable to communicate what was happening for her.
For a time, I told myself she was simply strong-willed and that firmer boundaries would fix things. We tried everything—sports, swimming, circus, structured group activities. Often these ended in distress, escalation, or complete shutdown.
Early Intervention was a lifeline. Speech therapy, occupational therapy and psychology support made an immediate difference. Progress came in layers—small improvements building into significant change. By the time she received her diagnosis at age four after an 18-month wait at the Royal Children’s Hospital, she had already changed significantly, though she remained—and remains—autistic.
At one point, I even asked the paediatrician whether the diagnosis might be something temporary. I now understand how misplaced that assumption was. Autism is lifelong.
Since then, Sparkles has grown enormously. Her communication has flourished. Her meltdowns are less frequent. Her ability to regulate has improved. Importantly, these improvements have come because of supports, not in spite of them.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1664
Her therapies have included:
● speech therapy, which transformed her communication after a period of regression ● occupational therapy, which supports emotional regulation, transitions and participation in daily life ● art therapy, which provides a safe and affirming outlet for emotional expression ● personal training, which supports regulation through physical activity and helps manage strong physical impulses ● support workers, who assist with transitions and reduce carer burden while also helping her build relationships outside the family
These supports have not reduced her disability. They have made her world more accessible.
This is why I am deeply concerned about both functional capacity assessments and changes to the definition of permanence.
Functional Capacity and Environmental Context
A key concern is the removal of environmental context in functional capacity assessments.
My daughter’s functioning varies significantly depending on environment, sensory load, relationships, anxiety levels and perceived demands. In a short clinical setting, she may appear articulate, engaged, and capable. That same child may be unable to function later that day due to overload, masking fatigue, or accumulated stress.
Masking is particularly relevant for autistic girls. It can create a misleading impression of capacity in assessments that are not designed to capture fluctuating, context-dependent disability.
As defined in the Bill:
“functional capacity” is assessed without assistance and with environmental and personal circumstances excluded as far as possible.
In my view, this risks excluding the very factors that define neurological disability.
This is not an abstract concern. Only last week, at a circus class, Sparkles was coping well until she was told she could not use equipment for safety reasons. That single moment triggered a significant meltdown. She became overwhelmed, dysregulated, and unsafe, requiring intervention and removal from the environment.
Up until that point, she had appeared fine. Under the proposed definition, that earlier “snapshot” would likely dominate any assessment. The moment that demonstrates disability is the moment the assessment framework explicitly risks excluding.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1664
That is not an accurate representation of functioning.
It is a selective one.
Permanent Disability and Progress
I am also concerned about changes to the concept of permanent disability and the risk that improvement may be misinterpreted as reduced need.
Autism is lifelong. Progress does not mean a child is no longer disabled—it often means supports are working.
If therapy leads to better communication, better regulation, or increased participation, that should be evidence that supports are effective, not evidence that they are no longer required.
There is a real risk that children who improve will become more vulnerable to funding reductions precisely because they have benefited from support.
Ministerial Power to Remove Funding Categories
I am particularly concerned about the proposal to grant the Minister broad powers to remove or reduce entire categories of supports.
Community participation is one of the areas most important to our family.
These supports are not optional extras. They are essential to:
● my daughter’s emotional regulation ● her social development ● her ability to participate in the community ● our ability as parents to sustain work and care responsibilities
Without these supports, I believe there is a very real risk that my daughter’s school attendance would decline. It would also likely reduce our capacity to maintain work and manage the demands of caring safely.
More broadly, I find the existence of such broad discretionary powers deeply concerning. Decisions about essential disability supports should not be able to be altered unilaterally in ways that bypass proper scrutiny or consultation.
This raises serious questions about accountability and democratic oversight.
Broader System Impacts
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1664
There is a persistent misunderstanding that disability support is only about individual outcomes. In reality, it prevents crisis.
When supports are removed or insufficient, the impacts do not disappear—they shift into schools, hospitals, mental health systems, child protection systems, and families already under strain.
We already see this in older families I work with professionally as a support coordinator. Many describe years of school disengagement, isolation, mental health crisis, and in some cases, young adults unable to leave the house without significant support.
These are not edge cases. They are predictable outcomes of unmet need.
What Needs to Change
If functional capacity assessments are introduced, they must:
● include environmental context for neurological and psychosocial disabilities ● account for fluctuating capacity and masking ● be conducted by assessors with genuine expertise in neurodevelopmental disability
If reforms to permanence are made, they must:
● recognise that progress does not equal recovery ● ensure children are not penalised for benefiting from therapy
Most importantly, I strongly oppose granting broad ministerial powers to remove or reduce entire categories of supports. This is not just a policy issue; it is a question of fairness, accountability, and human rights.
Supports should remain needs-based, transparent, and grounded in lived reality.
Conclusion
The NDIS has been life-changing for our daughter and for our family. It has allowed her to grow, communicate, regulate and participate in a world that is not always designed for her.
We are proud of her progress. But her disability has not disappeared, and it will not.
Any reform must reflect that reality.
I ask the Committee to ensure that changes to the NDIS do not unintentionally exclude children like my daughter—children whose disability is real, fluctuating, and often invisible unless you understand how to look for it.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1664
Her future is still being built. She deserves a system that sees her fully.