National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2529
Submission to the Senate Community Affairs Legislation Committee
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill
2026
Dear Senate Community Affairs Legislation Committee,
Thank you for the opportunity to provide a submission on the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.
My name is , and I live in regional Tasmania. I am the full-time primary carer for my two children, both of whom are autistic and have ADHD. My son and daughter both require significant support to participate safely in everyday life, education and the community. Their disabilities affect almost every aspect of our family’s daily functioning.
Like many parents of children with disabilities, caring for my children is far more than a full-time job. It has significantly affected my ability to return to paid employment because so much of my time is spent coordinating appointments, advocating with schools, managing therapies, organising support workers, communicating between services, attending medical appointments and helping my children navigate everyday life.
I understand that the NDIS needs to remain financially sustainable for future generations. I support efforts to reduce fraud, improve accountability and ensure public money is used wisely. As both a taxpayer and a participant’s parent, I want the Scheme to succeed.
However, I believe true sustainability comes from spending money smarter—not simply spending less.
Families do not experience disability in separate government departments. Health, education, mental health, housing, Centrelink and the NDIS all overlap. When one part of the system fails, families are left trying to bridge the gaps.
The greatest successes in disability support are often invisible because they are the crises that never happen.
My son is a good example of why disability and medical needs cannot always be separated. Many of his medical problems exist because of his autism, not alongside it. He now requires dental surgery under a general anaesthetic because, despite years of support, his autism means he cannot consistently tolerate brushing his teeth. He experiences chronic constipation made worse by medication he requires to manage anxiety, leave the house and sleep. His low muscle tone, restricted diet and refusal to drink water—all directly related to his autism—compound the problem further.
Too often our family is caught between systems. One says something is medical. Another says it is disability related. In reality, these issues are deeply interconnected. If the disability-related challenges could be better supported earlier, many later medical interventions could potentially be reduced or avoided.
Governments often end up funding the consequences rather than preventing them. Teaching a child to tolerate brushing their teeth may prevent dental surgery. Helping a child regulate emotions may prevent mental health crises. Supporting school participation may prevent years of school refusal. My son previously attended school as little as 8% of the time. Through years of coordinated work between our family, his school and therapists, he now attends regularly because the right supports were available.
Families should not have to reach crisis before they qualify for support.
If the NDIS no longer funds something, the need rarely disappears. The cost simply moves—to
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2529
hospitals, schools, mental health services, Child Safety, the justice system, unpaid carers and families. True sustainability should reduce overall costs to society, not simply shift them between departments.
The NDIS does not only support participants. It supports the people who support participants. Parents become support coordinators, therapy assistants, behaviour supports, advocates, administrators, transport providers and medical coordinators.
Carer burnout is not simply feeling tired. At best it reduces a parent’s capacity to care consistently. At worst, prolonged and unsupported burnout can contribute to severe mental illness, family breakdown and, in rare but devastating circumstances, serious harm or loss of life. Supporting carers protects children, families and communities.
I also believe there are opportunities to improve the sustainability of the NDIS without reducing participant supports. Families spend enormous amounts of time navigating the system itself. I regularly coordinate multiple providers, chase reports, repeat the same information, organise appointments and connect services that often do not communicate.
I encourage Government to consider:
- reducing repeated assessments for lifelong disabilities;
- improving communication between health, education and disability systems;
- reducing duplication of reports and paperwork;
- simplifying administration;
- providing consistent case coordination for families with complex needs; and
- investing more heavily in prevention and early intervention. Over the years I have spent countless hours trying to understand not only how to support my own children, but why the systems around us work the way they do. I am not submitting these ideas simply because I want more support for my family. I am submitting them because I genuinely believe there are opportunities to build a Scheme that is both more sustainable and more effective for everyone who relies on it.
I don’t expect parenting children with disabilities to be easy. What I hope for is a system that works alongside families instead of expecting them to hold increasingly complex systems together on their own.
I hope this submission helps demonstrate that supporting families earlier, coordinating services better and recognising the realities of disability in everyday life are not just compassionate choices—they are financially responsible ones.
Thank you for considering my submission.
Yours sincerely,