Submission to the Senate Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future
Generations) Bill 2026
I write to strongly oppose the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.
I make this submission as a widowed mother and the sole parent and lifelong carer of my 27-year-old son. My son has Down syndrome, a significant intellectual disability and, following a spinal cord injury, incomplete tetraplegia. His disabilities are permanent and lifelong. There is no treatment or intervention that will restore his lost function or eliminate his need for ongoing support.
Since the death of my husband, I have been my son’s only parent, advocate and informal support. We have no other family members who are able to share responsibility for his care. As I get older, I worry constantly about how I will continue to provide the support he needs while maintaining my employment.
I understand that governments have a responsibility to ensure the NDIS is financially sustainable. I support measures to improve accountability, strengthen oversight and eliminate fraud and misuse of Scheme funding. Every taxpayer expects public money to be spent responsibly. However, I do not support achieving sustainability by reducing the supports of people with the most significant and permanent disabilities.
My son’s most recent NDIS plan has already reduced his funded supports by more than half. His disability has not improved. His care needs have not reduced. The only thing that has changed is the amount of support available to keep him safe and allow him to live with dignity.
The practical consequences of this funding reduction are frightening. Without adequate funding, my son will become increasingly vulnerable and isolated. He will be forced to make impossible choices between receiving assistance with personal hygiene, preparing meals, attending essential medical appointments, participating in rehabilitation and therapy, accessing
the community and maintaining the social connections that are vital for his wellbeing.
No Australian with a permanent disability should have to choose between eating, showering or attending rehabilitation because their supports have been reduced.
The reduction in therapy funding is particularly concerning. My son’s therapy is not optional. It helps maintain his mobility, physical health and functional abilities. Without ongoing rehabilitation and therapeutic intervention, there is a real risk that his physical condition will deteriorate further. Preventing deterioration should be a priority, not something that becomes unaffordable because funding has been reduced.
The reduction in support also places enormous pressure on me as his sole carer. I am now facing the very real possibility that I may need to reduce my working hours or leave my employment altogether to provide the support that has been removed from his NDIS plan.
This would have significant financial consequences for me while also transferring costs from the NDIS to unpaid family care. It is neither fair nor sustainable to expect ageing parents to replace funded disability supports simply because those supports have been reduced.
I am deeply concerned that the policy direction reflected in this Bill will result in more participants experiencing reductions in supports despite having permanent and lifelong disabilities. My son’s experience demonstrates that this direction is already having real impacts on families like mine.
Reducing support does not reduce disability. It increases risk, isolation. It reduces dignity and independence. It places greater pressure on families. Ultimately, it increases the likelihood that people with disability will require more intensive and more expensive health and disability services in the future.
Rather than reducing essential supports for participants with the greatest needs, I urge the Australian Government to focus on eliminating fraud, exploitation and misuse of NDIS funding.
Australians have repeatedly been told that significant amounts of Scheme funding have been lost through fraudulent claims and criminal activity. Addressing these issues should remain a priority because it protects the integrity of the Scheme without harming people whose supports are genuinely reasonable and necessary.
People like my son did not create these problems. They should not be asked to bear the consequences of fixing the Scheme.
The NDIS was established to ensure Australians with disability could live with dignity, safety, choice and inclusion. My son has permanent disabilities that will never improve. He deserves the opportunity to live the best life possible, not a life made smaller because the supports that enable his independence have been taken away.
My son deserves to live safely, with dignity, and with the supports necessary to participate in his community. So do the thousands of other Australians whose voices may never be heard but whose futures depend on the decisions you make.
I respectfully ask this Bill be rejected in its current form or amended to ensure that people with permanent and lifelong disabilities are protected from unsafe reductions in essential supports. Please do not balance the sustainability of the NDIS on the backs of those who depend on it most.
Author: Jules Wone, Mother of a NDIS participant with severe, permanent intellectual and physical disability.