National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1284
Submission to the Senate Standing Committee on Community Affairs Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
Who I am
I am an autistic adult with ADHD, Generalised Hypermobility Spectrum Disorder, POTS, fibromyalgia, hypogammaglobulinaemia, osteopaenia, Raynaud’s disease, and several comorbidities currently under assessment. I am the primary carer for two twice-exceptional children, aged 13 and 9, both diagnosed with autism, ADHD, anxiety, and PDA profiles. My partner is also neurodivergent, works as a music teacher and studies full-time, and is the sole income earner for our family. I am submitting this because this Bill will directly and seriously affect my children’s lives, my own health, and our family’s ability to function.
About our NDIS supports
Both my children have been on the NDIS since late 2022 and late 2023 respectively. With their funding, they access psychology, occupational therapy, and speech pathology. These are not optional extras. They are the foundation of everything else.
With these supports in place, my children have developed a genuine, positive sense of who they are. They have learnt to self-advocate, to self-regulate, to identify when they need accommodations, and to ask for help. Their anxiety has decreased. They attend school more consistently. They have access to a team of professionals who understand them and will go to bat for them.
As a result of these neuro-affirming supports, my younger child was recently able to join a local circus class, something she had desperately wanted to do for years but could not face while her anxiety was too severe. She is now building skills, making friends, and finding joy in a supportive space outside of school. Both children participate in the Access All Abilities swimming program, which has given them the confidence to join school events and enjoy ordinary social moments, like a day at the beach or pool with friends, that were simply not possible before. These things matter enormously to children’s lives.
As their main carer, these supports also enable me to understand my children better, to advocate for them at school, and to avoid reaching a point of complete depletion. Without funded support, I would be expected to be their psychologist, their OT, their speech pathologist, their teacher, their advocate, and their parent, all at once, while managing my own significant health conditions.
When supports are not in place, both my children experience frequent meltdowns from school pick-up until bedtime, if they are even able to attend school. They lose access to basic needs, including eating, drinking, toileting, sleeping, and hygiene. That is the reality this Bill risks normalising.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1284
My concerns about specific provisions
Section 34(1G)–(1J), the parental presumption, is one of the most concerning provisions in this Bill. The assumption that parents automatically provide “substantial care and support,” and that the NDIS can therefore reduce funding on that basis, will fall almost entirely on women. I am already stretched to my limits. Building a legal presumption that I am covering the gap is not a policy position, it is an erasure of the work I do and the limits I have. It will force more women like me to abandon any remaining capacity to earn, study, or maintain their own health. It will push families toward breakdown. It will shift the financial burden onto aging grandparents who are already helping hold things together.
Section 25A(2) concerns me deeply. The idea that a treatment can be deemed “appropriate” for my children’s impairments even if we cannot afford it, or cannot access it where we live, directly contradicts the lived reality of families like mine. We are not wealthy. We live in a household on a single teacher’s wage. The NDIS is not means tested, and yet this provision would effectively use our financial and geographic circumstances against us when assessing whether my children’s disabilities are permanent. This is a mechanism for removing access without calling it means testing.
Section 25B(4) risks pushing children like mine toward generic, one-size-fits-all alternatives that do not meet their individual needs. Neurodivergent children with PDA or complex profiles cannot be supported by standardised programs designed for different presentations. Many children, including mine, would struggle in group-based sessions, especially if those sessions are run at school, where the environment is already overwhelming. For many children, being able to attend school (and therefore any programs run there) is dependent on the support they receive outside of school from their allied health team. The individualised, relationship-based therapeutic work my children access is precisely what makes the difference. Replacing it with a declared “alternative” that has not been tested or proven will set children back significantly.
Section 59B(4) authorises automated systems to make decisions involving discretionary and evaluative judgement about people’s plans and lives. My children’s needs cannot be assessed by an algorithm. The complexity of two twice-exceptional children with PDA profiles, anxiety, and significant school can’t requires human understanding and professional judgement. Delegating that to automated systems is not a reform, it is an abdication of responsibility.
The human cost
If these supports were reduced or removed, the consequences for our family would be severe. Declining mental and physical health for all of us. Further school can’t and burnout. Loss of the social participation my children have only recently been able to access. Relationship breakdown. My own increased reliance on my aging parents, who are already doing too much. A return to the crisis state we were in before supports were in place.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1284
I also want to say something that I feel must be said. I am the grandchild of Holocaust survivors. Disabled and neurodivergent people were among those targeted by the same eugenicist logic that categorised certain lives as less worthy of resources. I am not making a casual comparison. I am saying that when a government tells its most vulnerable citizens that their needs are too expensive, that their disabilities may not count, that their parents should simply absorb the cost, it sends a message about whose lives are considered worth funding. This Bill sends that message.
What I am asking the Committee to do
I am asking the Committee to recommend that this Bill be rejected in its current form. The NDIS needs genuine reform, but this Bill addresses the wrong problem. It targets the people who rely on the scheme rather than fixing the systems and processes that have failed them.
Any future reform must be developed in genuine partnership with disabled and neurodivergent people and their families, not on our behalf. It must comply fully with Australia’s obligations under the CRPD and the CRC. All rules and protections must be written into the legislation itself before any vote is taken, not deferred to ministerial discretion with a 12-month expiry window.
My children deserve the opportunity to live full lives. So do I. So does every family in our position. I ask the Committee to protect that.
Submission lodged by an NDIS participant carer, Melbourne, Victoria May 2026