National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1121
I am writing as an adult with a physical disability who also acts as a primary carer to my husband with psychosocial nd physical disability, my profoundly autistic, intellectually disabled, immune compromised 19yo son and my level two autistic son. I am submitting this to the Senate Standing Committee on Community Affairs in response to the NDIS Amendment (Securing the NDIS) Bill 2026.
Firstly I am writing about the cumulative effect of the proposed changes in this Bill on primary carers – and specifically on women. The NDIA’s own quarterly data (March 2025) shows that carer employment rose 6 percentage points — from 46% to 52% — with access to the NDIS. This is not a coincidence. Formal support enables primary carers to participate in paid work. When support is cut, that participation is reversed. This is the direct, documented relationship between NDIS funding and workforce participation for carers. Primary carers of disabled children and adults are disproportionately women. In 2018, there were an estimated 860,000 primary carers of people with disability in Australia. The majority are women. These carers consistently report reduced or ceased paid work, reduced superannuation, physical and mental health decline, and long-term financial disadvantage they do not recover from.
My own physical disability and my husband’s psychosocial and physical disabilities are completely disregarded by NDIS planners when my children’s’ plans are reviewed and we are constantly asked why we can’t do more of the physical work as informal support, especially for my 19yo son. This is in spite of proffering our own functional capacity assessments which clearly show our own limitations and my son’s FCA which shows he needs 1:1 support at all times. We provide the role of emotional support people for our sons, we support them financially and with housing, we cook meals, we encourage and plan therapy and community activities for them but we are physically incapable of the more physical support needed, often overnight.
When my 19yo son finished his special school years, we naturally asked for a review of his funding as he was losing that 25 hours of school support. His funding was instead slashed by the planner to about 3 hours per day plus support at a 1:3 ratio for day centre and respite. This in spite of a FCA pointing out the grave safety risks if he wasn’t funded 1:1 at home and in the community. The NDIS sent out an independent assessor who agreed he needed 1:1 funding and suggested the three overnight sleep shifts to “give the parents a break” was quoted in her report. This was a rather dubious way of pointing out that my son frequently needs support overnight.
The case conference calls at the ART, we eventually settled on a plan that supports my 19yo for 6 hours per day of self help and four hours per day of community access funding. Also for 1:1 care at Day Centre and Respite. We have also been provided 3 nights of sleepover support. The sleepover support sounds great in theory except when you consider as middle aged disabled people, we are apparently supposed to still support our adult son four nights per week with toileting and bed changes. This also completely overlooks the fact that the SCHADS award means that four hours active support have to be built in around the inactive hours. My son would be asleep for the majority of those four hours, He is presently funded for 10 hours per day over ADL’s and community access. Obviously the best use of this funding is while he is awake. Also that we have to provide a
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1121
room with a bed and a door for this support worker to sleep. My son would not understand that sometimes he needs to get a different person to help him and some nights Mum or Dad, he would instead constantly wake us for help.
My son needs help with everything, from getting dressed, toileting, using his IPad, watching TV, playing outside on the swing, working with him is a constant job of providing assistance in every area. Again this is an adult who is apparently in the core range of whom the NDIA is supposed to be for, yet we are being told to provide substantial physical support, despite our own impairments, in the way of “informal support”.
The proposed changes in this Bill will each individually increase the care burden on families. Together, they will push more primary carers — predominantly women — out of the workforce entirely. Under subsection 34(1J), the NDIS would be directed to ignore the pressure this places on families when deciding whether to fund a support. Families are already experiencing the consequences of this approach.“ These provisions do not reflect the reality of raising a child with complex disability needs. They reflect a policy decision to transfer costs from the NDIS onto families — and onto women in particular. This is a gendered economic harm. I ask the Committee to remove subsections 34(1G), 34(1H) and 34(1J) from the Bill, to require a gender impact assessment of all proposed changes before this Bill proceeds, and to commission modelling of the effect on carer workforce participation if the proposed funding reductions are implemented.
I am also writing about Schedule 1 Part 3 of the Bill, which requires every funded support to arise “directly” from the specific impairment a person was assessed for.
I am eligible for mesenteric Panniculitis for the NDIS, I also have Fibromyalgia, Autism (level 1) PTSD and GAD. Under the proposed changes I would be able legible for help with my abdominal issues only, obviously the psychological issues are compounded by my autism. My husband was accepted to NDIS for major depression and PTSD. He also has a long standing degenerative disc disease and has been assessed as having Baastrup’s Disease in his back. His back issues are compounded by the lack of executive function often present in ASD, yet under the proposed changes, he would not be able to get treatment for his psychosocial AND physical disabilities. My 19yo child’s autism does not present alone. He also has severe ADHD, GAD and epilepsy. His ultimate compounds difficulty in managing these other disabilities. My 17yo son has Autism level 2, ADHD and GAD. These conditions interact constantly and cannot be separated into neat categories. The support myself, my husband and my children need — [occupational therapy for executive function, physiotherapy/exercise physiology to manage physical symptoms, psychology to manage the mental support of these conditions, behaviour support to manage anxiety-driven meltdowns, physical support from support workers] — addresses needs that cut across all of these conditions at once.
Under this Bill, the NDIA could determine that this support does not “directly” arise from the primary diagnosis and therefore should not be funded. Our presentation would not change. Our needs would not change. But funding could be removed. This is not a theoretical risk. Many people are already being told their co-occurring conditions are not part of their NDIS-recognised impairment. Research published in the Journal of Autism and Developmental Disorders (Guan et al., 2021) confirms that the majority of autistic people have at least one co-occurring condition. These are not separate issues. They are part of the same person.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1121
I ask the Committee to remove the word “directly” from the Bill and restore the NDIA’s obligation to fund support for the whole person, not just an isolated disability.
Yours sincerely,