Submission 2407
Submission to the Senate Community Affairs Legislation Committee
Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for
Future Generations) Bill 2026
I am the mother of an 8-year-old boy with Autism Spectrum Disorder Level, a moderate intellectual disability and a genetic condition named Megalencephalic Leukoencephalopathy with Subcortical Cysts (MLC).
Like many parents of children with significant disabilities, I spend a lot of my time thinking about my son’s future. Not just next year, but ten, twenty and forty years from now. I know his disability is lifelong. What I don’t know is what his support needs will look like as he grows, develops and moves through different stages of life.
That uncertainty is exactly why the NDIS matters so much to families like mine.
Nelson Mandela once said that “A nation should not be judged by how it treats its highest citizens, but its lowest ones.”
While I do not agree with the term ‘lowest’ and I would use the term ‘most vulnerable’ instead, this quote remains true and profound.
I want to say from the outset that I am in full agreement with any measures that will crack down on fraud and criminal activity within the NDIS. These criminals have seen the introduction of the NDIS as an opportunity to exploit some our most vulnerable members of society for their own gain. These people should be dealt with under the full weight of the law and measures put in place to prevent this from happening into the future.
I also want to say that if I had the financial means to provide for all my sons disability related support needs I would. The stress of having to deal with the NDIA, the uncertainty over its future and being the subject in the court public opinion is simply not worth it.
However, the reality of my life does not afford me that opportunity and so I am forced to engage with a system that was designed to return dignity, choice and control to the lives of those with significant disabilities and instead is now, in my opinion, treating them as a financial burden and not valuable members of society.
Schedule 1 Part 1 – Functional Capacity Framework
I am concerned about the increasing focus on functional capacity assessments as the basis for determining access to the Scheme.
My son is only eight years old. The challenges he faces today may not be the same challenges he faces as a teenager or as an adult. Children grow and change. Their strengths emerge, their needs evolve and new difficulties can arise that nobody could have predicted years earlier.
Submission 2407
I worry about a system that places too much weight on assessments conducted at a particular point in time, especially when the details of how those assessments will operate are not fully contained within the legislation itself.
Schedule 1 Part 3 – Strengthening the Link Between Impairment and Supports
One of my concerns with this section is that it does not reflect the reality of how disability affects people’s lives.
My son’s autism and intellectual disability and long-term impacts of his genetic condition don’t fit neatly into separate boxes. His communication difficulties affect his behaviour. His intellectual disability affects his ability to learn, understand risks and participate in the community. His support needs overlap and interact every day.
I worry that requiring a stricter link between a particular impairment and a particular support may result in people missing out on supports that are genuinely necessary simply because real life is more complicated than legislation.
Schedule 1 Part 4 – Support Determinations
This is the section that concerns me most.
I am uncomfortable with the idea that a future Minister could reduce funding across categories of supports through a determination rather than through a full parliamentary process.
Supports that encourage community participation, skill building and independence are often dismissed as extras by people who have never relied on them. For many people with disability, these supports are what make it possible to participate in society, build relationships and live meaningful lives.
Decisions of that significance should not be made without strong scrutiny and accountability.
Schedule 1 Part 6 – Reasonable and Necessary Supports
The phrase “reasonable and necessary” sits at the heart of the NDIS.
My concern is that changes in this area may gradually narrow what participants can access, even when those supports are clearly important to their wellbeing, safety and development.
Families need confidence that decisions will continue to be based on individual circumstances rather than increasingly restrictive interpretations of what support is considered acceptable.
Schedule 3 – Governance and Administrative Arrangements
I am concerned about provisions relating to pricing decisions and automated administrative processes.
People with disability are individuals with unique circumstances. Their lives cannot always be reduced to a set of categories, algorithms or administrative rules.
Submission 2407
While efficiency is important, it should never come at the expense of fairness, transparency and human judgement.
Schedule 5 – Transitional Rules
I am also concerned about the broad powers granted during the transition to the new system.
Significant changes to the rights and supports of people with disability should be subject to proper public scrutiny and parliamentary oversight wherever possible.
Why This Matters Beyond My Family
I am writing this submission because of my son, but my concerns extend well beyond him.
Many families raising children with significant disabilities are exhausted. They are juggling therapies, appointments, school meetings, behavioural challenges and caring responsibilities that most people never see. Many simply do not have the time or energy to read legislation, follow inquiries or prepare submissions.
The children most affected by these reforms are also the least likely to ever have a voice in them.
My son has a moderate intellectual disability. There is a real possibility that he may never be able to independently navigate complex government systems, advocate for his own rights or challenge decisions that affect him. He will rely on others to do that for him.
That is why strong safeguards matter.
The NDIS should not depend on who happens to be the Minister of the day. It should be built on clear laws, strong protections and a commitment to the long-term security of people with disability.
Conclusion
My son is eight years old.
I do not know what his life will look like when he is eighteen, twenty-eight or forty-eight. I do know that he will still be autistic. I do know that he will still have an intellectual disability. And I do know that he will continue to need support.
When Parliament considers changes to the NDIS, I ask that members think not only about budgets and administration, but about the children who will be living with the consequences of these decisions long after this debate has ended.
The NDIS was created because Australians recognised that people with significant disabilities deserve security, dignity and the opportunity to participate in their communities. I urge the Committee to ensure that these principles remain at the centre of any reforms.
Thank you for the opportunity to make this submission.