National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1450

I am an undiagnosed neurodivergent parent and the sole carer of my 5-year-old daughter, who has autism level 2, ADHD, PDA profile and cerebral palsy. And my 2yo son who has had a few developmental concerns so far.

I am deeply concerned about the Future Generations Bill and what it could mean for children like my daughter and families like ours.

If the government is truly worried about NDIS costs, they need to start funding supports more intelligently instead of creating more barriers and wasting money on systems that make no sense for real families.

My daughter frequently uses speech therapy, physiotherapy, OT, play therapy and equine therapy. Many of these appointments involve up to an hour of travel each way because we do not have enough local services with appropriate experience and capacity. Regional and outer suburban families are already struggling to access support, and these proposed changes ignore the reality of what services actually exist outside major city areas.

The NDIS should make better financial decisions as a whole, allowing the purchase of 2nd hand equipment, funding alternatives if suggested by health professionals etc.,

I enrolled my daughter at the age of 2, in a local dance and movement class that was specifically recommended by her physiotherapist as an ideal activity for her needs. It allowed her to build movement skills in an inclusive community setting close to home, without me losing hours of paid work travelling long distances.

Due to financial strain, I recently asked whether the NDIS could help cover even part of the class fee only — not costumes, not concerts, just the actual class cost. This would have been approximately $40 a week for 40 weeks of the year. I was refused because it was considered something a “normal” parent would pay for.

Instead, the proposed alternative was funding a support worker to remove her from kinder or school twice a week, drive 3-4 hours round trip to attend a physio-run gym program with children not at her level, and pay for the class itself as well. This would probably cost over $1000 per week.

This is not only financially irresponsible, but also means exclusion from school, less family time, more exhaustion, and participation in an activity that was not even the one recommended for her by her treating physiotherapist.

I have also seen similar examples from other participants. One friend was refused funding for a Thermomix to support independent living and meal preparation, but was instead offered ongoing support worker hours to come into the home and write shopping lists and cook for them. The NDIS often refuses practical long-term solutions that could reduce reliance on the scheme in future, while approving much more expensive ongoing supports.

There is also enormous waste in the constant reassessment process itself. Families spend years paying for Functional Capacity Assessments, therapist reports, reassessments and evidence gathering simply to prove over and over again that disability still exists and that essential therapies are still needed.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1450

Public supports that simply do not currently exist or do not have the capacity to support the number of children who need them. Families are already sitting on waitlists for years. Public systems, schools, childcare and community services are overwhelmed, underfunded and stretched beyond capacity.

I am also deeply concerned about the reduction of participant choice and control. Over the last 5 years we have built a support team that understands my daughter, her communication, her behaviours, her strengths and her needs. That consistency matters. Children with disability are not interchangeable and supports cannot simply be replaced by generic services.

These changes would place even more burden on already burnt out carers while giving more power to systems and staff who often do not know the participant personally, do not properly read FCAs or impact statements, and do not take the time to understand what has actually worked for individual families.

Disabled people and carers should have been genuinely consulted before changes like this were proposed. Instead, many families feel ignored, dismissed and terrified about the future.

I am terrified that my daughter will eventually be removed from the NDIS and pushed onto “foundational supports” simply because she can walk and talk. I fear losing the support team and relationships we have built over the last 5 years.

The reality is that families like mine are already carrying more than we can manage. I am burnt out, financially overwhelmed and trying to parent a disabled child while managing my own issues. We cannot simply rely on an already overwhelmed public system, educators who are underpaid and leaving the sector in huge numbers, or parents absorbing even more unpaid care.

Children like my daughter deserve consistent support, early intervention, choice, dignity and the opportunity to reach their full potential. Please listen to disabled people, carers and families before making changes that will have lifelong consequences and cost lives.