National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2891
Submission regarding proposed changes to the National Disability Insurance Scheme (NDIS)
I am writing as a parent of an 18-year-old NDIS participant, to express my deep concern regarding the proposed changes to the NDIS and the potential impact they may have on participants like my son and families like ours.
My son is 18 years old. He lives with an intellectual disability, is non-verbal, and requires support with many everyday tasks that most people take for granted. While from the outside his disability may not always be obvious, the level of support he needs every day is significant.
As his parents, we work hard to protect him, advocate for him, and create opportunities for him to live a meaningful and fulfilling life. Much of what we do happens quietly behind the scenes. But I feel compelled to speak up because I am genuinely worried about what these proposed changes could mean for his future.
He requires prompting and hands-on assistance across most areas of daily living. He cannot independently regulate the temperature of a shower tap safely. He cannot tie his shoelaces. He needs support choosing clean clothing and managing personal hygiene tasks like applying deodorant and brushing his teeth. Even brushing his teeth requires repeated prompting due to distractibility, and at times physical assistance due to difficulties with coordination and motor planning.
He also lives with dyspraxia, which impacts his fine motor skills and ability to complete tasks requiring dexterity. While he can prepare a basic sandwich, his capacity to safely and independently prepare meals beyond this is limited without support.
He is non-verbal, which creates significant vulnerability in the community. He cannot ask for directions if he is lost. He cannot independently navigate public transport, read timetables, or safely access the community without support. He is vulnerable to exploitation and harm.
These are not occasional challenges. This is his everyday life.
At present, we are waiting on an NDIS review and have very limited funding in place. As a result, much of the support requires falls to our family. This impacts every part of our lives, including my capacity to work. I have had to structure my employment around his support needs, and I am only able to continue working because I can work full-time from home. Without appropriate funded supports, increasing my workload or working in a different role would not be possible.
What concerns me most is that discussions around NDIS reform are increasingly focused on cost-cutting, compliance, and misuse of funding, while losing sight of the people the Scheme was created for.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2891
Participants like my son are not statistics. They are not budget line items. They are people with goals, hopes, preferences, and the right to be included in their communities.
He deserves the same opportunities as any other young adult — to build skills, participate in the community, feel safe, and have a future that is bright and meaningful. The difference is that he requires consistent, hands-on support to achieve this.
That is why the NDIS exists.
The majority of participants and families are not exploiting the Scheme. Most of us are simply doing our best to support our loved ones to live with dignity, independence, and opportunity.
I ask that any proposed changes to the NDIS be considered with the lived experiences of participants like our son and families like ours at the centre of decision-making. Reforms must not make access to essential supports harder. They must not reduce opportunities for people with disability to live safe, connected, and meaningful lives.
Families like ours rely on the NDIS not for extras, but for essential supports that make everyday life possible.
Our son deserves a bright future. My hope is that policy decisions made now continue to protect that future, rather than place it at risk.