Submission 1976

Submission to the Community Affairs Legislation Committee

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submitted by: An autistic adult, primary school teacher, parent, instructor and community inclusion practitioner

Who I Am

I am an autistic woman, a primary school teacher, a parent of autistic twins, and a community sport instructor. I was diagnosed with Autism Level 2 and ADHD at age 40, after a lifetime of not knowing why things were so hard.

I am writing because I am currently experiencing autistic burnout - a real, clinically documented collapse in my ability to function - and I am deeply worried that this Bill will make things worse, not just for me, but for thousands of autistic Australians like me.

I want to be honest with the Committee: I’m not someone who looks like they need help. I work. I parent. I contribute to my community. And for most of my life, I managed, at enormous cost to my health, my relationships, and my sense of self. That cost has now caught up with me. I am in deep autistic burnout, and this submission describes what happened when I tried to get help.

What Burnout Actually Looks Like

Autistic burnout is not the same as being tired or stressed. It is a breakdown in the nervous system - a collapse of the coping strategies that autistic people build up over years to appear ‘normal.’ Research backs this up (Raymaker et al., 2020; Mantzalas et al., 2022), and so does my clinical team. Here’s what my day actually looks like right now:

• I wake up 2-2.5 hours before I need to leave the house, just to get my body and mind functional enough to go to work.
• At work, I use everything I have to teach well and hold it together. By the time I get home, I have nothing left.
• I experience between 5 and 15 meltdowns or shutdowns every week - neurological events that leave me unable to speak, move, or function.
• Basic tasks like cooking, cleaning, and showering often don’t happen on hard days. Not because I don’t want to. Because I genuinely can’t.
• I am forgetting how to do familiar things and making errors in areas where I used to excel. This is cognitive decline caused by prolonged burnout.

My clinical scores are severe. My WHO Quality of Life score for physical health sits at 13 out of 100. My depression and stress scores are both in the ‘severe’ range on a standardised clinical scale. My sensory processing is in the ‘much more than most people’ range across three of four measured areas. These are the results of standardised clinical tools, documented by my treating occupational therapist and psychologist.

What Happened When I Asked for Help

Submission 1976

I want to walk the Committee through what actually happened when I tried to access support, because I think it matters for understanding what this Bill could mean in practice. I was initially approved for NDIS with a modest plan. At my first plan review, most of that funding was stripped away. I appealed. For that appeal, I gathered additional clinical documentation at significant cost to me in money, time, energy, and stress. These aren’t resources I have in abundance. I submitted that evidence to the NDIA. The delegate did not review it. I know this because the rejection letter listed the documents they used to make their decision. The new documentation I had provided was not on that list. The decision was made without looking at the additional evidence I had been told to provide. There was no further internal appeal available to me. My only option was to lodge an external review with the Administrative Review Tribunal (ART). I did this, and prepared for a formal hearing. Days before the hearing was due, the NDIA made an offer. It was barely adequate, but I accepted it. Not because it was right, but because the toll of a formal hearing on someone already in burnout, with two autistic children and a partner also in burnout with no support, was a risk I couldn’t take. The system made it easier to settle than to seek justice. I have not yet had the chance to begin using that newly approved funding. And now, this Bill threatens to take it away.

The Problem with “You’ve Always Managed”

Throughout this process, the NDIA’s central reasoning has been that I have the capacity to live without support workers as I have all my life. I managed because I had to. I masked my autism so completely, for so long, that even I didn’t know I was doing it. That masking (the constant effort to appear capable, to fit in, to meet expectations) is what caused the burnout I’m in now. The system is pointing to the damage caused by decades of unsupported disability and using it as evidence that I don’t need support. This Bill proposes to increase the NDIA’s reliance on functional capacity assessments and give them more power to reduce or remove supports through those assessments. For autistic people who mask well, work, and communicate clearly, this is dangerous. We will be assessed on what we look like, not what it costs us to look that way.

The Same Evidence, Two Different Outcomes

My partner has the same diagnosis I do (Autism Level 2 and ADHD) assessed by the same clinician, with comparable evidence. He was denied NDIS access entirely. I received provisional approval. The difference was that when he applied, he was told that only assessments from clinical psychologists would be accepted, although the 3 other members of his household were approved with a general psychologist assessment. After so many assessments across the family, it wasn’t financially feasible to pay for an additional assessment to that he would be considered for the scheme. All four people in our household have a disability on the NDIS’s own list of recognised conditions. Three of us receive some support. One receives nothing. The NDIA’s decisions assume my partner can provide informal support to the rest of us, while he is in burnout himself, with no help of his own. It assumes that our children with disabilities can provide informal support to their parents, which is unethical. This is what low accountability and inconsistent decision-making looks like on the ground. This Bill would give the NDIA more power to make decisions like these faster, with less scrutiny. That should concern the Committee.

Why ‘Optional’ Supports Aren’t Optional

Submission 1976

I train and teach in a community sport. It’s one of the only things that consistently helps me regulate my nervous system, maintain my sense of identity, and stay connected to my community. Burnout has made it very difficult to get there independently. A support worker could make the difference between going and not going, and while I finally received minimal funding for this, this Bill threatens to remove a substantial part of it.

Community participation isn’t a luxury. For autistic people, structured and meaningful activity is often what prevents a more serious decline. Restricting it doesn’t save money, it shifts the cost to more expensive crisis intervention later.

What I’m Asking the Committee to Do

I am asking the Committee to include the following protections in the legislation:

• Keep individualised supports available for autistic participants whose needs can’t be met by broad ‘foundational supports.’
• Require assessors to specifically consider masking, fluctuating capacity, and autistic burnout - not just how someone presents on a good day.
• Add stronger safeguards before supports can be reduced or removed, so people aren’t destabilised by sudden plan changes.
• Ensure that when a participant provides new evidence, decision-makers are required to review it - and that failure to do so is a valid ground for internal appeal.
• Limit the Minister’s ability to change eligibility rules for whole disability groups without proper parliamentary oversight and community consultation.
• Improve consistency in how assessments are done, and give more weight to treating clinicians who know the person.
• Recognise that being employed, being a parent, or being able to communicate clearly does not mean someone has low support needs.
• Stop assuming that disabled family members can provide unlimited informal support to each other.
• Protect community participation supports as the preventative, health-maintaining investments they are.

In Closing

The NDIS was supposed to mean that disabled Australians could live full lives, not just survive. I’m a teacher. I show up for my students three days per week - my maximum capacity. I volunteer in my community. I am raising two autistic children, largely without external support, while my partner - also autistic, also in burnout - waits for help that hasn’t come. I have spent months and significant personal resources fighting for support that a delegate failed to properly consider. I settled a Tribunal case not because I was wrong, but because I was too depleted to keep fighting.

I’ve not yet used a single dollar of the support I fought for. And now this Bill threatens to take it away before I’ve had the chance. This Bill, as it stands, risks making procedural failures like mine harder to challenge, easier to repeat, and more damaging in their consequences. It will push autistic adults further into crisis before they can access help. It will place even more pressure on disabled households that are already beyond their limits. And we have seen how devastating that can be, and in some cases, it could the final straw that breaks families and lives.

I am asking the Committee to look at what is actually happening to people like me - and to make sure this legislation protects us, rather than leaving us further behind.

Supporting evidence available on request:

• Occupational Therapy Functional Assessment Report (WHOQOL-BREF, DASS-42, Sensory Profile 2, CIQ-R)
• Formal Review Support Letter from treating Occupational Therapist
• Psychology Progress Report from treating Psychologist
• Personal Impact Statement
• NDIS plan excerpt and written justification for declined supports, including document list from rejection letter