National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1629
Senate Inquiry — NDIS (Securing the NDIS for Future Generations) Bill
Submission to the Senate Inquiry NDIS Amendment (Securing the NDIS for Future Generations) Bill Submitted by: Parent and Carer | Canberra, ACT | May 2025
“The NDIS is not about giving people extraordinary lives. It is about giving people the right to live a reasonable life — with dignity, safety, autonomy and connection to their community.”
Introduction
I am the mother of a 16-year-old son with complex disabilities — autism, ADHD, intellectual disability, anxiety and multiple co-morbidities. I write this submission as a parent and carer who has lived the reality of navigating the NDIS, and who has seen its impact — for better and for worse — on families like ours.
I want to say plainly: the NDIS has kept my family together. Without it, I do not believe we would still be a family unit. Over six years, the support my son has received has helped him build independence, form social connections, participate in his community, and secure part-time employment. He now volunteers as a sports trainer. These achievements may appear modest to some. For our family, they represent an extraordinary transformation.
I understand the imperative for fiscal sustainability. I understand that protecting the scheme against misuse is necessary and right. But I am deeply concerned that several proposed changes will cause serious, foreseeable harm to participants, carers and families already carrying more than most Australians can imagine.
Carer burnout in this country is at crisis levels — and it is largely invisible. I am writing because I refuse to allow that invisibility to go unchallenged before this Committee.
Social and Community Participation: Essential, Not Discretionary
My single greatest concern is the potential reduction of social and community participation supports. For my son, these are not optional extras or lifestyle enhancements. They are clinically essential supports for emotional regulation, safety, development and mental health.
Without them, the consequences would be direct and severe:
• Progressive social isolation and withdrawal • Deterioration in mental health and anxiety management • Inability to safely leave the home without significant risk • Family support system pushed past breaking point
These supports also function as prevention. I have seen firsthand — and the evidence is clear — that community participation prevents far more costly outcomes:
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1629
Senate Inquiry — NDIS (Securing the NDIS for Future Generations) Bill
• Acute psychiatric hospitalisation • Family breakdown and out-of-home placement • Homelessness and emergency housing crises • Long-term disengagement from employment • Catastrophic carer breakdown
“Reducing these supports may create short-term savings on paper. It will create far greater costs — human and financial — across health, housing and crisis services.”
The Reality of Carer Burden
I am 55 years old. I have experienced significant health challenges of my own. There have been periods where my husband — and even my son — have had to help care for me. Our family does not have the luxury of treating NDIS supports as supplementary. They are foundational.
I am deeply alarmed by any policy direction that increases expectations on unpaid carers. Parents age. Carers become ill. Informal supports are finite — and they are already stretched to their limits across Australia.
I have connected with other families through our journey — parents in their 70s and 80s who are still the primary carers for adult children with significant disabilities, with no pathway in sight. This is not a fringe situation. It is a growing national reality.
Many families have already left employment or dramatically reduced their working hours to manage caring responsibilities. Even with the help of the NDIS my husband had to change careers to provide more informal support for my son. This meant a reduction of over $50000 a year in wages. Any reduction in formal support would not be absorbed — it would be a breaking point.
The public narrative that families should simply ‘do more’ is not only wrong — it is dangerous. It ignores the evidence, and it ignores the people living this reality every day.
Individualisation Must Not Be Sacrificed
One of the most important principles of the NDIS — and one I urge the Committee to actively protect — is the recognition that support needs are profoundly individual.
Two people with the same diagnosis can have entirely different functional capacities, risk profiles and life circumstances. One autistic person may live relatively independently. Another may require intensive daily supervision and support to remain safe. Applying funding caps or thresholds by diagnostic category, without genuine individualised assessment, is not reform — it is harm.
The concept of ‘reasonable and necessary’ must remain genuinely person-centred. The moment it becomes a category-based filter, people will fall through. Not because their needs have changed — but because the system stopped looking at them as individuals.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1629
Senate Inquiry — NDIS (Securing the NDIS for Future Generations) Bill
Functional Capacity Assessments
I support the use of functional capacity assessments where they are conducted fairly, by appropriately qualified professionals, and with the participant genuinely at the centre of the process.
When done well, these assessments provide clarity and help ensure support allocations reflect real-world function. They should remain a tool in the system — but they must never become a mechanism for wholesale reduction of supports, or a tick-box exercise conducted without genuine engagement with the participant’s lived experience.
Automation and Administrative Burden: A Serious Risk
I am strongly opposed to automated decision-making in NDIS planning, funding and support determinations. Disability is complex. Human lives cannot be adequately assessed through rigid algorithmic systems. The stakes are simply too high.
I am equally concerned about the growing administrative burden placed on providers and the workers who support families like mine.
Participants do not just need any support worker — they need skilled, experienced, trusted people in their corner. If we continue to make these roles unviable, participants will suffer the consequences directly.
Addressing fraud is legitimate and necessary. But the response must be targeted and proportionate. Increasing bureaucratic burden across the entire system — on honest participants, ethical providers and dedicated workers — is not an anti-fraud strategy. It is collateral damage.
The Broader Economic Case
The NDIS does not only support individuals. It supports entire family systems — and through them, the broader economy and community.
When disability supports are withdrawn or reduced, the downstream costs are real, predictable and significant:
• Carers reduce or exit employment entirely • Family mental health deteriorates, increasing demand on public health systems • Crisis services — emergency departments, acute psychiatric units, homelessness services — absorb the overflow • Community participation declines and social isolation deepens • Housing instability increases, including family breakdown and out-of-home placement
These costs are not hypothetical. They are the documented outcomes when formal disability support is insufficient. The NDIS does not create dependency — it prevents far more expensive crises.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1629
Senate Inquiry — NDIS (Securing the NDIS for Future Generations) Bill
Looking Ahead
My son still has significant needs ahead of him — supported independent living, ongoing respite, continued community access. These supports will be critical to his long-term safety and dignity.
Living with disability and caring responsibilities means living with a level of stress and hypervigilance that most Australians will never experience. The NDIS has not removed those challenges. But it has made them manageable — and in the hardest years, it has made the difference between our family surviving or falling apart.
I am not asking for extraordinary support. I am asking for the reasonable, necessary support that allows my son — and thousands of Australians like him — to live with dignity and safety in their community.
Recommendations
The Committee is respectfully urged to:
- Protect social and community participation supports as essential, not discretionary — and ensure they cannot be removed without clear, individualised clinical justification.
- Ensure all funding decisions remain genuinely individualised, and explicitly prohibit the use of diagnostic categories alone as the basis for funding caps or limitations.
- Formally recognise the contribution of unpaid carers, and resist any policy direction that increases reliance on informal support without corresponding formal support.
- Retain functional capacity assessments where conducted fairly, by qualified professionals, and with genuine participant involvement.
- Prohibit automated decision-making in NDIS planning, funding and support determinations.
- Reduce, not increase, administrative burden on ethical providers and disability workers — and address sector sustainability before experienced workers are lost.
- Ensure anti-fraud measures are precisely targeted at actual misuse, and explicitly avoid blanket restrictions that harm legitimate participants.
- Protect access to respite, assistive technology, and supported independent living pathways as fundamental to long-term sustainability and safety.
- Commission independent modelling of the full-system costs — across health, housing and crisis services — of reducing NDIS supports.
- Guarantee that participants currently relying on essential supports are not excluded from the scheme without safe, adequately funded, and realistic alternatives in place.
Conclusion
The NDIS has transformed my son’s life. It has kept our family intact through years that nearly broke us. I do not take that lightly, and I do not ask for more than is genuinely needed.
Sustainability is a legitimate and important goal. But sustainability cannot mean dismantling the supports that prevent far greater human and financial costs downstream. It cannot mean treating people with disability as line items rather than citizens.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1629
Senate Inquiry — NDIS (Securing the NDIS for Future Generations) Bill
“For many families, the NDIS is not about luxury. It is about survival — and the chance to live a reasonable life within the community they call home.”
I urge this Committee to look beyond the balance sheet and consider the real human consequences of these changes — for people with disability, for their carers, and for the kind of society we are choosing to be.
Name withheld at submitter’s request.
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