National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1371
Submission Regarding Proposed NDIS Reforms and Disability Support Changes
I am writing to express serious concern regarding the direction of current and proposed changes to disability supports and the National Disability Insurance Scheme (NDIS), particularly for autistic people, neurodivergent children, and families with complex support needs.
There is significant fear within the disability community that reforms are being driven primarily by cost containment rather than human rights, long-term outcomes, or genuine co-design with disabled people.
I want this submission to clearly explain what life actually looks like for families like ours behind the statistics, policy language and budget discussions.
Our family includes two neurodivergent children with significant support needs. Our daughter is autistic, has ADHD and a PDA profile. Our son also has sensory and support needs. Daily life requires constant planning, regulation, supervision and adaptation.
Our mornings begin long before school starts. Something as simple as a clothing seam, a tag, a noise, or a transition can completely derail the morning before breakfast. Medication routines are complex and time sensitive. Direct demands can trigger distress responses. Ordinary daily activities that many families take for granted often require intensive emotional support, negotiation, flexibility and regulation strategies.
Our daughter currently requires support from a psychologist, occupational therapist and speech therapist, with multiple appointments every week. At school she requires one-on-one support, movement breaks, sensory accommodations and significant assistance to access learning safely.
She is currently experiencing such high anxiety that she is pulling out her eyelashes and hair, leaving visible bald spots. This behaviour increases during periods of stress and overwhelm. Her school has already raised concerns about this occurring during the school day.
This is not a child who is “thriving” because she has too much support. This is a child whose family is working constantly to stop her from reaching crisis point.
Our daughter is bright, creative, caring and deeply imaginative. But her nervous system processes the world differently. Busy environments, transitions, sensory overload and demands can rapidly overwhelm her capacity to cope. Without appropriate supports, the impacts on her mental health, emotional regulation, learning and daily functioning become severe very quickly.
At the same time, we are also supporting our younger child, managing sibling dynamics, emotional regulation needs, and the reality that young children do not always understand why their sibling requires so much space and accommodation.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1371
The invisible labour involved in maintaining stability for our family is enormous.
Every therapy appointment attended, every successful school drop-off, every regulated afternoon, every piece of homework completed, and every community outing comes with an extraordinary amount of planning and emotional energy behind it.
We have already experienced significant gaps in support systems outside the NDIS.
Finding safe and appropriate care is extremely difficult due to the complexity of our children’s needs. Standard babysitting or childcare options are often not safe or appropriate. We have previously been denied respite supports through Carers Gateway despite clear need.
This is one of the biggest concerns many families currently have regarding proposed reforms and the repeated suggestion that “foundational supports” or mainstream systems will replace existing disability supports.
Families are being asked to trust systems that are already failing them.
There has been no clear explanation of:
what these replacement supports will actually look like who will provide them how they will be funded how long waitlists will be how neurodivergent children with complex needs will safely access them what happens to families in the gap between losing NDIS supports and alternative systems becoming operational
Support needs do not disappear because governments change funding structures.
If supports are reduced or removed, the likely consequences for families like ours include:
increased school refusal worsening mental health family burnout reduced workforce participation for carers greater crisis presentations increased social isolation escalating behaviours related to distress and overwhelm reduced long-term educational outcomes breakdown of family functioning
These are not hypothetical fears. Many families are already operating at capacity.
There is also widespread concern within the disability community regarding the increasingly adversarial nature of the NDIS, ongoing reassessments, barriers to
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1371
accessing supports, and fears that review and appeal rights may become harder to access over time.
Many disabled people and families feel that consultation processes are often performative rather than genuinely influential.
As one constituent stated in correspondence with their local MP:
“Trust, for me, needs to be built carefully and on the basis of demonstrated action — not assurances alone.”
The NDIS was created to allow disabled Australians to live ordinary lives and participate meaningfully in their communities. Reforms should strengthen those goals, not undermine them.
I urge the committee to:
protect access to reasonable and necessary supports reject blanket funding caps or arbitrary reductions ensure genuine co-design with disabled people and families maintain accessible review and appeal rights ensure replacement systems are fully operational before reducing existing supports invest in genuinely accessible mainstream services recognise the long-term social and economic harm caused when families lose support early
Disabled families should not be treated as economic problems to be managed.
These decisions will directly affect the safety, wellbeing, dignity and future of disabled Australians and the families supporting them every single day.