National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1485 - Supplementary Submission
Personal Submission: The Impact of Proposed NDIS Changes on My Family
I am writing as both an NDIS participant and the sole carer of two children who also hold NDIS funding. All three of us have been diagnosed with Autism Level 2. There is no other adult in this household to share the load, and there is no financial safety net that would allow us to access support privately if our NDIS funding were reduced or removed.
I am asking decision-makers to understand what that reality looks like before legislating changes that would directly harm families like mine.
What the NDIS means for us right now:
The NDIS is not a luxury for our family. It is the difference between my children developing the skills they need to navigate the world, and falling further behind without adequate support. It is the difference between me functioning as a parent, and being so overwhelmed by my own support needs that I cannot meet theirs.
Right now, our NDIS funding gives my children — aged 6 and 11 — access to speech therapy, occupational therapy, behavioural support, and psychology. For me, it provides the capacity-building support I need to manage my own autism alongside the demands of sole parenting two autistic children. These are not optional extras. They are the scaffolding that holds our family’s daily functioning together.
How I feel about the proposed changes:
I am frightened. I am also frustrated that changes of this magnitude — changes that will reshape the lives of hundreds of thousands of Australians — have not been communicated clearly or compassionately to the people most affected. The language used in the proposed amendments to the NDIS Act is complex and difficult to interpret. For many participants, particularly those with cognitive or communication differences, these changes will be virtually impossible to understand without significant support.
What these changes would mean for our family:
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1485 - Supplementary Submission
If our supports were reduced, there is no alternative system waiting to catch us. I have already explored what mainstream services can offer. My children have had access to school-based support, counselling, and privately funded psychology. These helped to a limited degree, but they were insufficient — and they were not sustainable. The NDIS stepped in precisely because those pathways were inadequate.
As a single parent, I cannot afford to privately fund speech therapy, OT, behavioural support, psychology, and physiotherapy for two children simultaneously, while also meeting my own support needs. These services, accessed privately, would cost thousands of dollars per month. That is simply not a financial reality for our household.
If supports were removed, the gap would not be filled. It would simply be a gap — and my children and I would fall into it.
What would happen if our social and community supports were reduced:
For autistic children and adults, social participation does not happen automatically. It requires supported skill-building, structured opportunities, and consistent therapeutic input. Without funded community access and social supports, my children would become increasingly isolated. For my 6-year-old, who is still developing foundational communication and regulation skills, the developmental consequences of losing support at this stage would be significant and potentially irreversible. For my 11-year-old, who is navigating the already complex social landscape of approaching adolescence as an autistic young person, withdrawal of support could have serious impacts on mental health and long-term social inclusion.
For me, reduced social and community supports would mean reduced capacity to parent effectively — which has a direct effect on both children.
What would happen if our capacity building supports were removed:
Capacity building supports are what allow us to develop skills, independence, and resilience over time. Without them, we would not stay the same, we would go backwards.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1485 - Supplementary Submission
Removing these supports now, before that capacity has been built, would be counterproductive to everything the NDIS was designed to achieve. It would cost the system more in the long run, not less.
If I had never had access to capacity building supports in the first place, I would be in crisis — and my children would be bearing the consequences of that.
The proposed changes to the definition of “permanence”:
This is the change that concerns me most deeply, and I urge decision-makers to consider its implications carefully.
Autism Level 2 is a lifelong neurological condition. It does not resolve. It does not respond to treatment in the way an injury or acute illness might. Support and therapy help autistic people manage their environment and develop skills — but they do not make a person less autistic. There is no intervention that changes the underlying diagnosis.
Under the proposed changes, participants may be required to demonstrate that they have exhausted all “available” treatments before being deemed eligible. Critically, a treatment may be considered available even if it is financially out of reach or geographically inaccessible. For a single-income family in which three members have the same lifelong condition, this clause could be used to question our eligibility for the very supports that allow us to function.
The notion that we have not “tried enough” would be both clinically inaccurate and deeply unjust. We have tried. We have accessed what was available to us. The NDIS exists because those efforts were not enough — not because we gave up, but because the condition we live with requires ongoing, funded, structured support.
I ask that any changes to the definition of permanence explicitly recognise that neurodevelopmental conditions, including autism, are lifelong by nature — and that financial or geographic inaccessibility of a treatment cannot reasonably be used to exclude someone from eligibility.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1485 - Supplementary Submission
In closing, our family’s story is not unusual. There are many families across Australia in which multiple members hold NDIS funding, in which there is no private safety net, and in which the scheme represents the only meaningful pathway to participation, development, and quality of life.
I ask that this submission be read not as statistics, but as the lived reality of one family — a parent and two children — who need the NDIS to remain functional, fairly defined, and genuinely accessible.