Submission to the Parliamentary Inquiry into the National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026

To the Committee,

is six years old. He loves riding his bike, camping with our family, going to school, making friends, exploring nature, and making us laugh. He has a little brother who adores him, and together they do all the things little boys love to do.

If you met today, you would simply see a happy, cheeky, adventurous six-year-old. What you don’t see that has Duchenne muscular dystrophy-a rare, progressive, and life-limiting genetic condition for which there is no cure.

My name is . I am ’s mum, and two years ago, our family received the diagnosis that changed our lives forever. Since then, I have learnt more about disability than I ever imagined possible. Before ’s diagnosis, I didn’t truly understand what life was like for families living with disability. I noticed that everyday things often seemed harder, but I did not understand how many of those challenges came not only from disability itself, but from the barriers people face every day and from not always being seen or included.

Today I see disability differently. I see incredible strength, resilience and determination, but I also see how often people with disability are overlooked, underestimated, or expected to settle for less than everyone else. That has been one of the hardest lessons of all.

I never imagined I would be writing to my Australian Government asking that my son be given the opportunity to live the fullest life possible. Yet here I am.

Like every parent, I dream about ’s future. Unlike most parents, I also grieve parts of that future long before they are gone. We know there will be a last time runs. A last time he climbs the playground. A last time he rides his bike. A last time he walks into his classroom carrying his own school bag. We just don’t know when those moments will come. That uncertainty changes the way you see everything. As a parent, I no longer measure time in years. I measure it in milestones.

Every extra month can walk into school, ride his bike, run around with his little brother, splash around during hydrotherapy, explore nature while we’re camping or simply laugh with his friends is precious.

That is exactly what the NDIS protects.

It protects his childhood and gives him a better chance for his future.

Through the NDIS, receives physiotherapy, hydrotherapy and group physiotherapy. He also wears night splints to help maintain his ankle range of movement and slow the development of contractures. These are not optional extras. They are evidence-based supports that help preserve his strength, mobility and independence for as long as possible.

Because of these supports, is still able to walk independently to and from his classroom every day. To many people, that may seem ordinary. To our family, it is extraordinary. Every extra day he walks beside his classmates is another day he gets to experience childhood on his own two feet.

Group physiotherapy has given so much more than physical strength. It has given him confidence in what his body can do. It has helped him make friendships outside of school, build resilience and discover that he belongs. Those things cannot be measured in budgets, yet they will shape the person he becomes. If these capacity building and community participation budgets get cut,

isolated from those “life-brightening” activities that allow him to be a person in our community.

One of the challenges with Duchenne muscular dystrophy is that, in the early years, children can look just like their peers. Because is still walking, smiling and playing, many people do not see the disability. What they don’t see is the work behind every one of those moments. They don’t see the hydrotherapy sessions the physiotherapy appointments, the daily stretching, the night splints, the planning, the determination. The success of early intervention can make disability appear less visible right now, but that should never be mistaken for a lack of need.

As grows, we already know many of the supports he will need. He will require occupational therapy, specialised seating, assistive technology and, eventually, a wheelchair. These are not unexpected costs. They are the natural progression of Duchenne muscular dystrophy. Having confidence that these supports will be there allows our family to spend less time fearing the future and more time helping enjoy the present. The bill allows the NDIA to use automated systems to process eligibility and administrative decisions, making budget cuts on community participation and therapies… How will this assess real needs of children and others with high needs to allow them to live full and independently driven lives?

I work as a nurse in a public hospital. My husband works full-time. Like every family, we are doing everything we can ourselves.

The NDIS doesn’t replace our role as parents. It strengthens our ability to give every opportunity to thrive.

I understand that governments have a responsibility to ensure the NDIS remains sustainable for future generations. I support that goal. But sustainability should never come at the expense of children whose conditions are permanent, progressive and well understood.

   's condition will not improve. His support needs will only increase. Early intervention is not an

unnecessary expense. It is an investment. It preserves ’s independence. It delays complications.

It keeps children like participating in school, family life and their communities. Families like ours already carry enough. We carry anticipatory grief and uncertainty. We carry the responsibility of making every moment count. We should not also have to carry the fear that the supports helping our child live his best life may disappear. This Bill if passed will do that.

The NDIS has not changed ’s diagnosis.

It has and will change what is possible for him in his future.

It means can still walk into his classroom with his friends. It means he has the confidence to join group physiotherapy and make friendships outside school. It means we can plan family camping trips, watch him ride his bike and celebrate every milestone while his body still allows him to do these things.

We don’t want sympathy. We want opportunity. We want to be able to participate in life, contribute to his community and be seen first as the funny, adventurous little boy he is-not simply as a diagnosis. His disability may shape his journey, but it should never determine the opportunities available to him.

I respectfully ask the Committee to ensure that any reforms to the NDIS continue to protect children living with permanent and progressive disabilities by maintaining timely access to evidence-based therapies, occupational therapy, assistive technology, specialised equipment and the supports that allow children like to remain active, independent and included for as long as possible.

Page 3

Please remember that behind every policy decision is a child like He is not asking for special treatment. He is asking for the same opportunities as every other Australian child-to learn, to play, to belong, to dream and to know that his life is worth investing in.

Please protect the NDIS for children like -not because they deserve pity, but because they deserve possibility.

Thank you for taking the time to read our family’s story and for considering the real-life impact your decisions will have on children living with permanent and progressive disabilities.

Yours sincerely,