Submission 1837
Submission to the Senate Community Affairs Legislation Committee Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
I am an NDIS participant, a registered counsellor in private practice, and the primary carer for four neurodivergent children. I am a late-identified autistic and ADHD woman with complex trauma, and my NDIS plan was approved in October 2025. It funds occupational therapy, psychological support, and a small amount of core support for community participation, not luxuries, but at least some infrastructure that allows me to begin to live rather than survive.
Having said that, after receiving my first plan in which my diagnostic report and recommendations by a multidisciplinary team were overlooked, I obtained a Functional Capacity Assessment to request a review. I was hoping to have my core supports increased from 1.5 hours a month to something that would allow me more substantial support within the home in areas I struggle most, laundry, appointment management, domestic overwhelm. That process and review resulted in a cut to OT funding, and 3.5 hours a month funded to core to help with daily living.
I was told I could not have more help because there was no evidence that I had tried calendars and reminders.
I am yet to figure out how best to utilise 3.5hrs of funding a month in the most sustainable and efficient way to help make a substantial difference to my life. 3.5hrs was funded to me, by the way, for social and community participation so I could “go out for a coffee”… when I would really love some help with body doubling in my home to meal prep for days I’m so exhausted from everything I do, or to help me complete life admins tasks, or body double me while I manage domestic tasks in the home. Someone to help implement strategies recommended by our OT and Allied Health professionals so we can function in ways that relieve burn out. The last thing I need is to go out for a coffee.
I have spent a lifetime over-functioning for survival and planning to ensure that my family will be okay when I can no longer care and manage for them as I have had to. I fear that day is racing to meet me. I’m sure on paper it would seem like I am very “able” and have managed a great deal despite the challenges faced, but I would argue that a
Submission 1837
greater success of my achievements would be better measured if everyday I didn’t contemplate taking my own life, or live terrified with worry that my kids would take theirs.
I want to tell this committee about my family, because the figures in this bill are not abstract to us.
My son, who is a twin, is twenty-two years old and will turn twenty-three in October. He has been in autistic burnout since he was thirteen. That is nearly a decade. He did not finish high school. He cannot get a job. He does not eat reliably even when the house is full of food. He often goes more than five days without showering. He has developed bed sores from the immobility that burnout produces. I am not describing a bad week. I am describing the shape of his life for almost ten years, without formal support, and without meaningful intervention in the years when intervention might have changed what came next.
Since he received his diagnosis and NDIS plan in August last year, we have seen slow and steady progress. While other parents of kids his age, and younger, are celebrating sporting achievements, university degrees, camping trips and travel and the beginnings of adult relationships, I am watching on with pride as I start to see him consistently engage his support worker, practise going out into the community to buy his own safe foods, pants, and underwear. I get to celebrate his routine of ensuring at least two showers a week before appointments, and a slow return of interest to his hobbies and interests.
My daughter, who will be fifteen in August, has been unable to attend school reliably since Grade 1. At the start of this year she stopped attending entirely. She is now being home-schooled because her nervous system has reached a point where the school environment is no longer something she can sustain. She is burnt out. She is a child. She has a modest NDIS plan that I know well enough how to help her utilise to access a good occupational therapist, psychologist and support worker, to ensure that she can build some understanding of her disability and build capacity in living in a world that was not made for her.
My youngest is four years old. She is the first person in my family who will receive meaningful early intervention while she is still young enough for it to matter. The evidence on early intervention is not contested. What is apparently contested is whether the scheme that funds it will still exist in a form that can reach her.
I work clinically with late-diagnosed autistic and ADHD women, parents of neurodivergent children, and neurodivergent couples. I see in that work what happens when early intervention does not arrive and when support comes too late or not at all. I see it in the adults sitting across from me after decades of masking and burnout. I see it in the parents holding their children’s unmet needs while burning through their own
Submission 1837
capacity. I see it in my own home, every day.
This bill proceeds without the foundational supports that the 2023 independent review identified as a non-negotiable precondition for any changes to eligibility or plan funding. Those supports do not exist. My family’s situation is partly a consequence of their long absence. The proposal is to change access rules before building the infrastructure that was supposed to replace what is being removed. For families like mine, that is not reform. It is removal.
I am asking this committee to consider where costs go when support is withdrawn. They do not disappear. They are carried by families, and the majority of that carrying is done by women. I am one of those women. I am the primary carer for a son who has been in burnout for a decade, a daughter who can no longer attend school, and a four-year-old whose early intervention window is finite. I am doing this as a sole trader, as a practitioner, and as a person with my own support needs. A gender impact assessment of these changes has not, to my knowledge, been conducted or released. That is not an oversight. It is a choice, and this committee should require it to be corrected.
Autistic people account for approximately half of all NDIS participants and close to four in five new entrants. The Productivity Commission, which designed this scheme, identified this population as exactly the people it was built to serve. My family are those people. My clients are those people. What is being proposed is a contraction without a mandate, implemented through a fifteen-day submission window on 113 pages of legislation.
I am asking this committee to recommend that this bill not proceed until foundational supports are in place as prescribed by the independent review, that full downstream cost modelling be tabled and made public, that a gender impact assessment be conducted and released, and that the government be required to reconcile the fraud claims made in parliament in July 2024 with the confirmed figures that have since been documented. These are not unreasonable requests. They are the minimum conditions under which a bill of this magnitude should be considered.
The promise made to people who entered this scheme was explicit. Access, once granted, was a commitment. My family made decisions based on that promise. A non-answer to any of the questions above is itself on the record. I am asking that it be treated accordingly.
Thank you for reading and consideration,
Submission 1837