National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1518
Update from Parliament - NDIS changes. Have your say.
My name is , and together with my husband , we are the primary carers for our son, who is 39 years of age. Our son lives with Autism Spectrum Disorder, Intellectual Impairment, Attention Deficit Hyperactivity Disorder, and anxiety. For 39 years we have been his primary source of care, support, and advocacy. We write this statement not to seek sympathy, but to honestly convey what this sustained caregiving has cost us and what we fear for the future with proposed changes to the NDIS Legislation.
- The Unpredictable and Relentless Nature of Our Son’s Needs.
What makes our son’s support needs particularly exhausting is not only their extent, but their unpredictability. His combination of diagnoses means that no two days are alike. A change in routine, a sensory trigger, or a shift in his anxiety levels can escalate rapidly and without warning into a crisis requiring immediate, skilled intervention. We live in a constant state of readiness; unable to fully relax, because we never know what the next hour may bring. The value of the therapeutic supports our son currently receives cannot be overstated. His therapy has taken years to establish and has produced measurable improvements in his ability to manage his emotions, communicate his needs, and engage with daily life more safely. These gains are fragile. Any reduction or removal of these supports would not simply pause his progress and risk reversing it, with significant consequences for his wellbeing and for the level of support we as carers would need to provide in their absence. Continuity of therapy is not optional for our son; it is foundational.
Ageing Carers Carrying Serious Health Burdens We are ageing, and our capacity to sustain this level of care is diminishing in ways that are no longer abstract. I live with depression and anxiety, conditions that have developed and deepened over years of carer stress and isolation. Managing my own mental health while remaining present and capable for our son is an ongoing and exhausting balancing act. D has recently faced a serious and aggressive cancer diagnosis, requiring treatment that has significantly impacted his strength, energy, and availability. The two of us, the entire support structure our son depends upon, are ourselves unwell. Our conversations are dominated by our son’s needs and the logistics of his care. We love one another and we love our son — but we are honest enough to say that decades of this pressure has taken a toll we cannot minimise.
Our informal support network is extremely limited. Our daughter K is willing to help and loves her brother deeply. However, given the complexity and unpredictability of our son’s needs, K is only realistically able to assist during genuine emergencies, and even then only for short periods. Any absence from home on our part requires extensive planning, preparation, and coordination and even then carries significant risk. The rare breaks we have taken have been limited in length, constrained in nature, and dependent on careful arrangements that cannot always be relied upon. Beyond K , we have no other family or friends who are able to provide relief.
The Compounding Impact of Insufficient Funding
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1518