To whom it may concern,

I am writing to urge you to oppose the NDIS Future Generations Bill 2026. I write to you as both a mother of 2 sons with lifelong disabilities, but also as a Registered Nurse and Child Health Nurse who helps families navigate their lives with a child living with a disability.

Let me be clear: I support NDIS reform.

I care deeply about the future of the scheme and recognise that, in its current form, it is financially unsustainable. There are providers and organisations exploiting the system, and they should absolutely be held accountable.

Early in our disability journey, one occupational therapy provider charged us significantly more for exactly the same service once my son received NDIS funding. Before the NDIS, we paid privately at a lower rate. As soon as funding was approved, the provider requested a copy of his plan and increased their fees, despite there being no change to the service delivered. Stories like this are common.

If the Government wants to tackle waste, fraud, price inflation and profiteering, it will have my full support.

What I cannot support is reform that appears to target children and families rather than the providers who have benefited from weaknesses in the system.

My two sons are both NDIS participants. One has ADHD and Autism Spectrum Disorder Level 1, and the other has Autism Spectrum Disorder Level 2. These are lifelong neurodevelopmental disabilities. They are not conditions that children simply outgrow.

I am deeply concerned about proposals that may remove children with so-called “mild” disabilities from the NDIS and redirect them into non-individualised programs such as Thriving Kids.

There is nothing mild about living with disability. There is nothing “mild” about my day to day challenges with my children.

There is nothing mild about emotional dysregulation, social isolation, sensory challenges, learning difficulties, anxiety, therapy appointments, specialist appointments, and the constant advocacy required just to access education and community participation on close-to-equal terms with other children. And I mean constant- it NEVER ends.

For anyone using the term “mild”, I invite them to spend just 24 hours in my shoes. I guarantee you they would run for the hills.

My youngest son has only recently started showing meaningful improvements after years of therapy, intervention and support. We have fought incredibly hard to get him to

this point.

Yet despite his disability remaining lifelong, he is now facing the possibility of losing access to the very supports that made that progress possible. Just 2 weeks ago, 2 days after he had his 6 birthday, we were “gifted” with the dreaded NDIS email threatening to remove him from the scheme; as his crippling diagnosis is “not enough”.

The message families are hearing is that if intervention works, support is removed. That is not a reward for progress—it is a penalty for it.

This is not a theoretical policy discussion for my family. It is something that keeps me awake at night. My youngest son has just started Prep. Despite the progress he has made, he continues to face significant challenges that affect his learning, social skills and daily functioning. I worry constantly about what happens next if (and when) these supports disappear. I worry about his education, his confidence, his ability to form friendships, his mental health and ultimately his future independence.

As a parent, there is nothing more frightening than watching support being withdrawn while your child is still struggling every single day.

My eldest son will soon transition to high school. Both of my children are entering some of the most important years of their development. These are not years where support should be reduced. These are years where support matters most- and the proposed bill intends to obliterate their current funding and supports; WHY!?

The skills they develop now will influence their education, independence, employment opportunities, mental health and future participation in society. If we get this right, these children have every opportunity to become independent, productive and engaged members of our community. If we get it wrong, we risk undoing years of progress and creating far greater costs for families, schools, health services and the community in the future.

I am particularly concerned by the move away from individualised funding under the proposed Thriving Kids model. Children with the same diagnosis can have vastly different strengths, challenges and support needs. My own children are proof of that. A one-size-fits-all approach cannot adequately replace individualised planning and funding.

I am also concerned that diagnoses and recommendations from Paediatricians, Psychologists and Allied Health professionals may be given less weight in future eligibility decisions. Families spend years obtaining assessments, building evidence and advocating for their children. Clinical expertise must remain central to decision-making about support needs.

As both a nurse and a parent, I have seen firsthand how early intervention and disability-specific supports can change the trajectory of a child’s life. I fear that shifting children

Concerns Regarding the NDIS Future Generations Bill 2026

into broader state-based systems will increase waitlists, reduce access to specialised services, and leave many families without the support they need.

The education and health systems are already under immense pressure. I do not believe they are currently equipped to absorb thousands of children losing access to individualised NDIS supports. From what has been proposed so far, I cannot see how Thriving Kids will provide support equivalent to what children currently receive. Instead, I fear it will simply shift responsibility onto systems that are already stretched beyond capacity.

Beyond Thriving Kids and Foundational Supports, I am also concerned by other aspects of the NDIS Future Generations Bill 2026.

I oppose provisions that allow supports to be reduced or removed when a participant’s disability and support needs have not changed. Funding decisions should be based on evidence and genuine need, not scheme savings targets.

I also oppose further restrictions on support worker funding and community participation supports. These are not optional extras. They help people with disability access their community, build independence, develop relationships and participate in everyday life. For many children, they are the difference between inclusion and isolation.

I support reform that targets waste, fraud and provider profiteering.

I do not support reform that removes children with lifelong disabilities from individualised support because they have been classified as having “low to moderate” needs.

I respectfully ask that you advocate for:

• Protection of individualised supports for children with lifelong disabilities.
• Clear and transparent eligibility criteria for Thriving Kids and Foundational Supports.
• Assurance that children will not lose support simply because their disability is considered “mild”.
• Genuine consultation with families and disability stakeholders.
• Stronger regulation of providers engaging in excessive charging and inappropriate billing practices.
• Reforms that target waste and exploitation without reducing essential supports for children and families.

The NDIS should absolutely be sustainable. But sustainability cannot come at the expense of children who rely on these supports to learn, participate, communicate, regulate and thrive.

I am asking you not only to oppose this Bill, but to publicly advocate for children with lifelong disabilities whose voices are largely absent from this debate.

Will you oppose this Bill, speak out about the real risks it creates, and stand up for families like mine? I would appreciate hearing your position and what action you will take to ensure children with disabilities are not left behind.

Reform is necessary. But children should not be asked to bear the burden of fixing a system they did not break.