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.
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, advocate for them at school, and avoid reaching a point of complete depletion. Without funded support, I would be expected to be their psychologist, OT, speech pathologist, teacher, advocate, and 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; this is the reality this Bill risks normalising.
Submission 1284
My concerns about specific provisions
The parental presumption (section 34(1G)–(1J)) 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.
A treatment being 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. While the NDIS isn’t means tested, this provision would effectively use our financial and geographic circumstances against us when assessing whether my children’s disabilities are permanent—a mechanism for removing access without calling it means testing.
Pushing children with neurodivergent profiles including PDA towards generic, one-size-fits-all alternatives risks pushing them away from individual needs. Many children struggle in group sessions especially those run at school which creates overwhelming environments. Being able to attend school often depends upon support received outside of school by allied healthcare teams. Individualised relationship based therapeutic care makes all the difference replacing these services with untested programs sets back progress significantly
The authorisation (section 59B(4)) of automated systems making decisions involving discretionary judgement about people’s plans is irresponsible; My children’s complex two twice exceptional conditions require human understanding rather than algorithmic assessment.
the human cost:
If supports were reduced consequences include declining mental health burnout loss social participation breakdown increased reliance aging parents return crisis state.
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 costly, 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 messsage.
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 eeds 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 tpeople and their families, not on our behalf. It must comply fully with Australia’s obligations uunder 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 p position. I ask the Committee to protect that.
Submission lodged by an NDIS participant carer, Melbourne, Victoria May 2026