National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1379
To the Senate Committee,
I am writing as a parent of a child with disability to explain how vital the NDIS has been for our family, and how frightening these proposed changes feel for families like ours.
My daughter lives with Autism Spectrum Disorder, ADHD, PDA and incontinence. Her disabilities affect almost every part of daily life from emotional regulation, communication, sensory processing, toileting, sleep, education, social participation, and basic day to day functioning.
Caring for a child with these complex and overlapping needs is not something that happens for a few hours a day. It is constant. Our family life revolves around managing appointments, therapies, meltdowns, sensory needs, emotional distress, school difficulties, and continence support.
Over time, the level of care required meant I could no longer continue working in the way I once did. I had to stop and eventually close my business because it became impossible to balance the unpredictable and intensive needs of my daughter with running a business and maintaining an income. This has had a major financial impact on our family, but also a significant emotional and mental health impact on me as a parent and carer.
The NDIS has not been a luxury for us. It has been essential. Supports help prevent crisis, reduce stress on our family, and give my daughter opportunities to participate in the community and develop skills she otherwise would not have access to.
I am deeply concerned about proposed changes around “permanence” and expectations that families must try every possible treatment before qualifying for support. Many therapies are expensive, inaccessible, unavailable in some areas, or simply unrealistic for exhausted families already stretched beyond capacity. Conditions like autism, ADHD, and PDA-related support needs do not disappear because a family is forced to “try harder” or pursue endless treatments.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1379
I am also concerned about the impact of reducing capacity-building and social supports. These supports are often what keep families functioning and children engaged in school and community life. Without them, families risk burnout, isolation, worsening mental health, and increased crisis presentations.
The emotional toll on carers is rarely acknowledged enough. Parents are already carrying enormous responsibility. Many of us are surviving on very little sleep, little support, financial strain, and ongoing stress while trying to advocate for our children in systems that are difficult to navigate.
I ask the Committee to consider the real human impact these changes could have on disabled children and their families. Families like mine do not need more barriers, more uncertainty, or more pressure. We need stability, understanding, and support that recognises the long term realities of disability and caregiving.
Thank you for considering my submission.