Submission 56
Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for
Future Generations) Bill 2026
Submitted by: Parent of an adult NDIS participant, Disability Training Consultant and former National Team Lead in the corporate sector, NSW
- Introduction Thank you for the opportunity to provide a submission to the Committee. I write as the mother of a 23-year-old daughter, who has GMFCS IV Cerebral Palsy and profound high-frequency hearing loss. I also write as a professional working in disability training and NDIS-aligned program design.
My daughter’s disability is lifelong, significant, and physical. She requires 24/7 access to care, assistance with all transfers, and support with every aspect of daily living. She is bright, articulate, and determined, but her independence is entirely dependent on the supports the NDIS provides.
I support the intent to secure the NDIS for future generations. However, several provisions in this Bill risk narrowing access, reducing flexibility, and placing young adults with lifelong disabilities like my daughter at significant risk.
This submission blends my lived experience as a parent and my professional understanding of disability systems.
- Our Lived Experience With the NDIS daily life is shaped by her disability and by the supports she receives. She cannot transfer independently, cannot access most of our home, and requires assistance with all personal care, toileting, dressing, showering, and mobility. She cannot be left alone for more than an hour due to safety risks.
I am a single parent who works full-time. I complete every transfer, every shower, every toileting routine, every meal, every medication, every appointment, every night-time wake-up, and every emergency response. My caring responsibilities extend across every hour of every day.
In 2025, OT completed the Zarit Burden Interview. I scored 42, placing me in the high to severe range of carer burnout. I have postponed my own medical care for years. I work late into the night to meet professional expectations. I have experienced emerging anxiety and exhaustion that I now manage with therapy.
This is the reality behind the policy.
Submission 56
- Our 11-Month Fight for SIL and SDA was initially denied Supported Independent Living (SIL) and Specialist Disability Accommodation (SDA), despite her lifelong, high-physical-support needs. We spent 11 months in the appeals process before finally receiving a successful outcome at ART.
During that period:
independence was stalled. My health deteriorated. Our home remained inaccessible. mental health declined due to isolation and lack of autonomy. I continued providing 24/7 care without adequate support.
The ART ultimately recognised what was always true: that SIL and SDA were reasonable and necessary for a young adult with her level of physical dependence.
This experience makes me deeply concerned about any legislative changes that could further narrow access or increase administrative barriers.
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Goals and the Importance of Independence
wants what any 23-year-old wants:
to move out of home to build friendships to work more to participate in her community to make her own decisions to live a life that is hers
Without SDA and SIL, she cannot cook, clean, wash, or access most of our home. She cannot build the independent living skills expected of any adult. She cannot safely be alone for an extended period. She cannot grow into the adult she wants to be. The NDIS has given her the possibility of independence but only after a long, exhausting fight. We continue to wait for a place, but at least now the process to secure it is complete.
Any reform that narrows access or reduces flexibility risks taking that possibility away.
- Comments on the Bill’s Provisions
The Right to Appeal and Natural Justice
One of the most concerning elements of the proposed reforms is the shift to limiting appeals to process only, rather than allowing participants to appeal the substantive outcome of an NDIA decision. This represents a profound departure from the principles of fairness, transparency, and participant rights embedded in the original NDIS Act.
Submission 56
As a parent who spent 11 months in the appeals process including the ART to overturn an incorrect decision denying my daughter SIL and SDA, I know firsthand that the outcome not just the process is what determines whether a person with disability can live safely, independently, and with dignity. The NDIA’s initial decision was wrong. It did not reflect functional capacity, her support needs, or the evidence provided. If appeals were limited only to whether the NDIA followed its own internal process, my daughter would still be living in an inaccessible home, without the supports she needs, and I would still be providing unsustainable 24/7 care.
Restricting appeals to procedural matters removes a critical safeguard for participants and families. It effectively shields incorrect decisions from scrutiny and denies people with disability the right to challenge the substance of decisions that shape their lives. This is not consistent with the intent of the NDIS Act, which was built on principles of choice, control, fairness, and accountability.
The right to appeal an incorrect decision is not an administrative convenience. It is a matter of justice, safety, and human rights.
5.1 Schedule 1 - Access and Planning Measures
Functional Capacity Definition
The proposed definition appears narrower and more rigid. disability is lifelong and stable, but her needs fluctuate with fatigue, pain, and environmental barriers. Her functional capacity can change in the right environment. A narrow definition risks oversimplifying complex realities. We have already experienced being denied access to SIL and SDA with the decision referencing elements of her high cognitive capacity with no reference to her low physical capacity. The narrow nature of ‘functional capacity’ is either ‘can’ or ‘can’t’, reducing the nuance of how environment and time can play with capacity.
Recommendation: Ensure the definition explicitly recognises fluctuating, cumulative, and environmental impacts.
Support Determinations
Predetermined support categories may streamline administration but risk reducing flexibility. Flexibility is not optional; it is how families keep their children safe.
Recommendation: Retain meaningful participant choice and control.
Plan Renewal and Reduced Reviews
Reducing unscheduled reviews may help the NDIA but may trap participants in unsuitable plans. Young adults transitioning to independence need responsive planning.
Recommendation: Guarantee timely reviews when circumstances materially change.
Submission 56
“Other Service Systems”
This is one of the most concerning provisions. It risks pushing participants into systems that are underfunded, inaccessible, or non-existent. Prior to the NDIS, we had excellent experiences with Enable in NSW. It was a slow process, but it was effective and they paid close attention to recommendations of Allied Health professionals. No such services currently exist.
Recommendation: Clearly define “other systems” and ensure no participant loses essential supports due to system gaps.
5.2 Schedule 2 - Fraud Measures
I support fraud reduction but caution against compliance burdens that harm legitimate providers.
5.3 Schedule 3 - Governance
Governance must prioritise transparency and participant communication.
5.4 Schedule 4 - Planning Framework
Planning must remain collaborative, not prescriptive.
5.5 Schedule 5 - Transitional Rules
Transitions must be gradual and supported.
Carer Health and Sustainability
Parents cannot continue absorbing the system’s gaps. My burnout score of 42 is not unusual. It is typical of parents providing 24/7 care without adequate supports.
The Cost of Getting It Wrong
The cost of inadequate supports is not just financial. It is:
mental health decline lost independence reduced employment increased reliance on informal care long-term harm worsening disability
- Recommendations Summary
Submission 56
Broaden and clarify the functional capacity definition. Maintain flexibility within support determinations. Ensure timely access to plan reviews. Clearly define “other service systems.” Implement fraud controls that do not burden legitimate providers. Prioritise transparency and participant communication. Ensure transitions are gradual and supported. Embed participant and family voice in all reforms.
- Conclusion The NDIS has the power to transform lives but only when decisions are correct, fair, and grounded in the realities of disability. My daughter’s experience shows what happens when they are not. was denied SIL and SDA despite overwhelming evidence of her need. It took 11 months from S100 submission to an ART decision to correct that. Eleven months of exhaustion, fear, and uncertainty. Eleven months of a young woman’s life on hold, of me providing unsustainable 24/7 care while working full-time.
We have only just received a positive outcome. has not yet moved into SIL. She is still living in an inaccessible home, still relying on me for every transfer, every shower, every night-time wake-up, every emergency. The decision we fought for is the decision that will finally allow her to begin her adult life.
If the proposed reforms go ahead and participants are restricted to appealing process only, not outcome, then families like mine would have no pathway to correct an incorrect decision even when that decision determines whether a person can live safely, independently, and with dignity. This is not a minor administrative change. It removes a fundamental safeguard built into the NDIS Act: the right to challenge the substance of a decision that shapes a person’s entire life.
Had these rules been in place last year, would still be without SIL and SDA. She would still be trapped in an inaccessible home. I would still be providing unsafe levels of informal care. And the NDIA’s incorrect decision would have stood unchallenged not because it was right, but because we would have been legally prevented from appealing the outcome.
Reforms must strengthen the Scheme, not narrow it. They must protect the independence, dignity, and futures of young adults like . They must reduce, not increase, the burden on families who are already stretched beyond their limits. And they must preserve the right to appeal the substance of decisions because without that right, the NDIS cannot be fair, accountable, or participant-centred.
Thank you for considering this submission. I would welcome the opportunity to provide further information.