National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2965
My husband aged 61 years old receives support from the NDIS. In his 20s he was diagnosed with a malignant brain lymphoma had surgery, whole brain radiation and chemotherapy. Unusually for the time he survived and lived well, ran his own small business, then worked for our health care system, paid taxes and volunteered in the community. At 54 the impact of the radiation damage increased and has caused dementia and neurodegenerative disease. He has a life limiting condition and will progressively deteriorate.
He is no longer able to work, drive, cook a meal, or manage his own affairs and requires support in every aspect of his life. Despite this he volunteers, attends a day program and participates in the community. This is critical to his mental wellbeing.
The small amount of NDIS support he currently receives is critical, its not perfect and not enough but if it wasn’t there I don’t know what we would do. The NDIS currently provides him around 32 hours of capacity building support PER YEAR – not nearly enough but it is so critical as the exercise physiology/OT support (32 hours in total not for each therapy) means that he can still walk and move in relative safety. If we need to do a report, then his hours would be significantly less. Without therapy he will likely end up in permanent full time care which is much more costly to the government and community. It is incredible value for money.
He receives social and community support – that gives him around 4 hrs per week with a carer and another group day program. This is partially covered by NDIS and the rest by me his partner. At 67 I am still working to cover these and other medical and health care costs.
He receives standard support for transport that goes nowhere near what is actually needed.
The proposed changes to the NDIS Act are likely to affect his capacity building support as well as support to access the community, attend appointments, go shopping, go to exercise classes.
The proposed legislation means that as discretion to the Minister to make many changes at will are likely to impact him at the drop of a hat. This means that I may not be able to plan effectively for the year coming up.
Other changes that suggest we need to explore other options to help him are of no use and the idea of whether a condition is permanent. Already early onset dementia is listed separately from neurodegenerative disease – although it is a neurodegenerative disease. Unless the Minister and the NDIA know of any treatments that reverse dementia or progressive neurodegenerative disease these should be put together and classed an approved condition.
For him and other people unless those treatments are available under another program such as Medicare or state programs the majority of people will never be able to access. The legislation must enshrine that if the suggested treatments to be explored are not available under another program that is already in existence, funded and accessible, no one should be worse off.
The new legislation will damn a generation of children, teenagers, young adult, middle aged people to an awful life and their carers driven to the edge.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2965
As a carer who is responsible for everything, shopping, cooking cleaning, medication, life admin, transport, medical appointments, and on call 24/7, the only break I get is when my husband is attending groups or with his carer. If this support disappears, my ability to continue is seriously undermined. His ongoing care at home, is entirely dependant on me continuing to be healthy.
Please seriously rethink these changes. If you need funds to maintain access, please tax the resources sector, cancel AUKUS which might never happen, tax capital gains etc etc etc.
Please undertake meaningful real and deep consultation with participants, charities and other groups with enough time for time poor people to make a contribution so that you can rethink what you are doing. Australia this is not good enough.