National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 124
SUBMISSION TO THE SENATE COMMITTEE INQUIRY National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submitted by: On behalf of: Date: May 2026
About Us
I am the parent and full-time carer of a 9-year-old Autistic boy with ADHD, a PDA (Pathological Demand Avoidance) profile, and clinically assessed anxiety. has an approved NDIS plan (26 February 2026 to 25 February 2027) with total funding of -
is home-educated. He left structured schooling in 2025 after experiencing burnout. He receives Occupational Therapy at home through Think Autism Therapy Services. His therapy is coaching-focused, building consistent PDA-informed support around him.–
I am writing to raise serious concerns about two provisions in this Bill: the stricter access and permanence criteria, and the restrictions on plan reassessment.
Concern 1: Stricter Permanence Criteria Will Exclude Children Like
The Bill proposes that from January 2028, a person’s impairment will only be considered -permanent if all appropriate treatments have been tried first. For many families, this provision is unworkable and deeply unfair.
conditions, including Autism, ADHD, PDA, and severe anxiety, are not conditions that disappear with treatment. They are lifelong neurological differences. However, his ability to function day to day is significantly affected by anxiety. A formal assessment by-Clinical Psychologist at (January 2025), found total anxiety score on the MASC-2 scale to be at T-score 90. This places him at the very top of the scale. Four areas were highly elevated: separation anxiety, generalised worry, social anxiety, and obsessive and -compulsive patterns.
has a PDA profile. This means his nervous system responds to everyday demands as threats. Anxiety is not a separate, treatable problem we have not yet addressed. It is a core part of how his brain works, woven into his Autism and PDA profile. There is no treatment that will-resolve this. It is permanent.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 124
The Bill’s permanence test risks forcing families like ours to attempt treatments that are not appropriate, not accessible, or actively harmful, just to prove eligibility. For a child with PDA and severe anxiety, forcing compliance-based treatments could cause significant harm and setback. I ask the committee to ensure that autism, ADHD, and co-occurring anxiety in a PDA profile are explicitly recognised as permanent impairments that do not require treatment trials before eligibility is confirmed.
Concern 2: Restricting Plan Reassessment Will Harm Children in Recovery
The Bill proposes that participants can no longer request a plan reassessment at any time. They will need to prove a significant and ongoing change in functional capacity or life circumstances.
This provision fails to account for children like whose support needs are not static. They change based on recovery, development, burnout cycles, and the success or failure of support strategies. -
is currently in a post-burnout recovery period. His capacity is growing slowly, but it fluctuates. Some days he is regulated, engaged, and connects well. Other days he withdraws, cannot leave his room, and requires intensive co-regulation support from me. This is not-stubbornness or a bad day. It is the reality of burnout recovery for an Autistic child with severe anxiety.
His current NDIS plan was designed around where he was in February 2026. By the time his plan renews in February 2027, his needs may have shifted significantly, in either direction. Under the current system, his therapy team submits a progress report six weeks before reassessment. The NDIS then reviews his plan based on current evidence. That process exists because children’s needs change.
Under the proposed changes, if needs grow, or if a new support becomes urgently necessary, I would need to prove a “significant, ongoing” change before the NDIS will act. That threshold is vague and creates a barrier that disadvantages families without legal or advocacy -support. three requested supports (dietetics, community participation, and support coordination) were already refused in his current plan, meaning I am navigating all of this alone. - I ask the committee to:
- Retain the right for families to request a plan reassessment when their child’s needs change, without needing to meet an undefined significance threshold.
- Ensure the auto-renewal provision does not replace a genuine needs-based review at plan end date.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 124
- Define clearly what “significant and ongoing change” means, and include examples of neurodivergent burnout and recovery cycles as qualifying circumstances.
Concern 3: Reducing Support Worker Funding Will Push Carers Past Breaking Point
I am sole carer. I home-educate him full time. I manage every aspect of his daily routine, his regulation, his transitions, his therapy coordination, and his community access. There is no second adult in the home sharing this load. -
support worker currently takes him fishing on Wednesday evenings. This is one of the few times each week where I am genuinely off duty. It is also one of most regulated and joyful experiences. It directly supports his mental health and mine.- -My own capacity to support is not unlimited. On 16 May 2026, after a sustained period of verbal aggression and a prolonged dysregulation episode in the car, I reached my limit. That incident is documented. It happened because I had no break and no buffer. This is what carer -depletion looks like in practice.
OT support plan, developed by in April 2026, explicitly identifies carer coaching and consistency across home and community settings as central to his therapy. The plan recognises that regulation, engagement, and-capacity all depend on the people around him being calm, informed, and consistent. If I am depleted, his regulation suffers. If his regulation suffers, his capacity for learning, connection, -and daily living collapses.
The Minister’s new power under proposed Section 34A to reduce Core Flexible funding across groups of participants by legislative instrument is a direct threat to this. Core Flexible funding already reduces significantly in quarters 3 and 4 of his current plan, from per quarter down to . If that is reduced further, support worker hours will be cut. The Wednesday fishing trips, and any other community access support, will be at risk. – -The cost of cutting carer support is not invisible. It shows up in emergency departments. It shows up in carer breakdown, family crisis, and children being placed in out-of-home care. I am asking the committee to recognise that support workers do not just support the participant. They support the entire family system. Cutting that support has consequences that far exceed any short-term savings.
I ask the committee to:
- Remove or limit the Minister’s power under Section 34A to reduce Core Flexible funding by legislative instrument without individual plan review.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 124
- Ensure any funding reduction process requires genuine consultation with affected families before taking effect.
- Recognise carer capacity as a legitimate factor in NDIS funding decisions, not just participant capacity.
Conclusion
The NDIS changed life. It funds the therapy that is helping him recover from burnout. It supports him to develop skills in regulation, communication, and daily living. Removing or restricting the ability to reassess his plan, or making it harder for children like him to access the -scheme, will not save money in the long run. It will push families to breaking point and children further into crisis.
I urge the committee to amend these provisions before the Bill is passed.
Parent and carer of-