National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1773

My name is . I am a 52-year-old parent and carer of 3 autistic children (one of whom is now a young adult) ages 19, 15, 12. Myself and my partner (and mother of our children) share caring duties. All three of our children are NDIS participants. Since leaving the work force in 2023, due to the difficulty of caring for our children, I have received a carer payment. I am grateful for the payment, but it is minimal and applying for it felt like the only option I had - other than neglecting my family’s needs. My partner is also a carer. We survive because in some ways we are privileged, but it is financially difficult and feels fragile.

Up until now the NDIS has given us some level of hope that we can support our children to navigate a world not built for them and prepare them for a life of challenges ahead. Given the recent discourse about the NDIS bill and one of its primary ‘targets’ for reducing the cost being the supports received by autistic people, I am extremely concerned.

The main supports we currently receive from the NDS are Occupational Therapy and Psychology.

• Occupational therapy has been particularly useful for our youngest child. this is helping him understand his sensory needs and challenges. Concepts about his body and mind and the specific way it works can be investigated and strategies to help cope can be provided.
• Psychology has been used by all three of our children. We had to fight hard to get this included in our plan. It has been invaluable. It allows our children the time and space to think about the impacts of their disability and to consider what their specific needs are. It also allows them to address the anxiety that their autism causes through their interactions with a society built around the needs of neurotypical people. This support addresses a direct need caused by their disability.

Modern society is already challenging for autistic families like ours. Everyday activities, like leaving the house to go shopping, can be extremely difficult for autistic people. With three autistic children, the logistics around daily life are complex to say the least. All three of our children were unable to attend school to varying degrees due to their autism and a lack of flexibility in the education system. Particularly our youngest two children, who both stopped being able to attend school entirely at the start of 2024. This had a seismic impact on our family. The life we were used to, the ‘normal’ life, was upended. We were now at home with our children, caring for them and homeschooling. This situation continues and we see no potential for the situation to change soon. Schools are not accessible.

The psychological impacts on our children from this inability to attend school are very real and concerning. Psychology sessions have been helping them to try and address the feelings of failure and inability to perform the same tasks and meet the social norms expected of their peers. I am extremely concerned that psychological support services will be denied to my children in the future – given how hard it already is to access for autistic NDIS participants. Mental health care plans DO NOT adequately provide for this need. They still have a large out of pocket cost and are not designed as an ongoing support - rather a fix the problem and then return to normal.

The discussion around moving autistic children off the NDS to alternate programs like ‘Thriving Kids’ gives me great concern. What environments and institutions will these generic services be provided in? Will schools be involved? All three of the schools that our children attended showed an almost complete lack of ability and flexibility to adequately provide accessible spaces for our children. The strategies and actions taken ultimately relied on the child adapting to the system rather than creating an accessible environment for individuals. Supports on the NDIS need to be specific to the individuals - schools are a long way away from being able to provide this currently. While schools need to change, that is not a short-term option for providing support to autistic children. What guarantee is there that new programs can provide the individualised support our children need?

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1773

The supports we have received through the NDIS will not ‘cure’ our children of autism. It is a lifelong disability. However, they can empower them to live with their disability and navigate society more effectively. It can be a slow process. Necessary supports are not always available, or participants may not be ready to access a particular support. That does not mean there will never be a NEED for that support. Funding for supports must be available when the participant is ready for the support – not the other way around. I am worried that in the process of ‘streamlining’ and making the NDIS ‘sustainable’ that the system will become less flexible and less reactive to the needs of the participants.

Despite the NDIS now being a crucial and appreciated part of our lives, the initial funding proposal for our youngest child was woefully inadequate. The application and subsequent review and appeal process was traumatic and involved a lengthy process fighting highly paid NDIA lawyers. However, ultimately, we were able to make our case and receive appropriate supports. Without the right to review and challenge the original funding decision, we would have been stuck with inappropriate and insufficient funding. Given that the right of appeal to decisions is under threat in this proposed bill, families like ours may be left with insufficient supports, or any support at all, and have no means to remedy the situation – this is unacceptable. It assumes the system will not make mistakes – we all know that is not true. This decision alone will setup the NDIS to cause more harm to families who need support.

I request the senate committee demand major amendments to the bill and that more time be allocated to review the changes. The NDIS as a needs based social construct must be preserved. It is a social advancement that our society should commit to in full – as it was envisioned. It is for everyone. Anyone at any time may need the service it provides. This is about priorities, and the NDIS should be of the highest priority. It reflects on our entire society. Budgetary controls on the NDIS should be careful and considered and made without impacting the quality of life for participants.

Specifically;

• Decisions must still be reviewable and a recourse to challenge decisions must be available to all applicants.
• The NDIS should not have restrictions placed on services provided and participant numbers determined by budgetary goals. It is needs based. Any funding cuts made should be based on solid evidence that services will not be adversely affected.
• Where alternative programs are proposed to cut costs and replace services currently delivered through the NDIS, they must be evidence based, fully developed, trialled and ready to provide service immediately when participants are moved to them.

Yours in trust,