National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1338
To the Senate Community Affairs Legislation Committee,
My name is , I am a single parent and full-time carer to my 6-year-old son, who is severely disabled, with level 3 autism, he has high support needs, limited verbal communication, and significant anxiety and trauma-related presentations following failures within the school system.
I am writing because I am deeply concerned about the proposed changes to the NDIS and the devastating impact they may have on children like my son and families like ours.
Over the last five years, my son has made enormous progress, not because systems worked well, but because I have spent every day fighting to make sure he had the support, safety, advocacy and stability he needed. His development, emotional regulation, communication and quality of life have improved because of intensive unpaid care, constant advocacy, and my willingness to sacrifice nearly every part of my own life to ensure he had the best possible start.
I am exhausted.
I live in a constant state of burnout trying to navigate systems that are supposed to support disabled children but instead create barriers, delays, stress and trauma. I have no informal supports. My son’s father has him approximately 30 hours a fortnight due to work commitments, leaving the majority of care responsibilities with me full-time.
Before becoming a carer, I worked in disability support and rostering for support companies. I now survive on the Carer Payment because the caring load, trauma, advocacy responsibilities and system demands have made it impossible to maintain employment in my field. At 37 years old, I have returned to study in the hope of building a career that may eventually allow me to work around my son’s needs.
These proposed reforms threaten even that possibility.
I am particularly concerned about the increased reliance on informal supports and parental responsibility within the proposed changes. Families like mine are already carrying unsustainable levels of unpaid care. Reducing funded supports does not reduce disability or support needs. It simply transfers the work, cost and risk onto families already at breaking point.
If my son loses supports, I will not suddenly become less burnt out, less isolated, or more capable of providing intensive care without consequence. Instead:
- my ability to study and eventually return to work may disappear entirely
- my mental and physical health will deteriorate further
- our financial hardship will increase
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1338
- my son’s progress may regress due to increased instability, reduced supports and increased stress
- our reliance on other government systems including Medicare, mental health supports and Centrelink will increase
My son already experienced significant harm from systems that failed to understand or appropriately support disability. The trauma from educational settings has resulted in anxiety, trust issues and PTSD-like presentations. Consistent and individualised supports are not optional extras for him — they are protective factors that help him feel safe enough to participate in the world.
I am also deeply concerned about moves toward standardised assessments and reduced individualised planning. Autism, trauma, communication difficulties and high support needs cannot always be accurately measured in short assessments or captured by algorithms. Children can mask distress. Families often hold everything together behind closed doors until they collapse from exhaustion.
A functional capacity assessment conducted on a single day cannot measure the cumulative impact of constant caregiving, behavioural support, supervision, emotional regulation support, disrupted sleep, safety risks, advocacy demands and burnout experienced by families like ours.
I am frightened by proposals that would allow supports to be reduced across cohorts rather than based on individual need. My son is not a statistic or a funding category. He is a child with unique needs, vulnerabilities, strengths and goals.
The suggestion that parental responsibility should absorb even more of the caring burden ignores the reality many families already live in crisis. There has to be a point where the government recognises that expecting parents to endlessly absorb more unpaid labour is neither safe nor sustainable.
I ask the Committee to consider:
When supports are removed, what happens next?
Who carries the risk when carers burn out completely?
Who pays when parents cannot remain in the workforce?
What happens to children whose safety, regulation and development rely on consistent support?
Which government systems inherit the cost when the NDIS withdraws support from families already struggling to survive?
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1338