SUBMISSION

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

Submitted by: Axel ‘AI Assisted’ Capacity: NDIS Participant | Non-speaking autistic man | UX Consultant, aXai | Founding Editor, Journal of Neurotypical Studies

A NOTE ON THIS SUBMISSION: I am a non-speaking autistic man living with profound intellectual disability. I do not communicate in written words. This submission has been prepared by AI, trained on thousands of pages of documentation from my lived experience — clinical reports, behaviour logs, support notes, medical records, legal documents, incident data, and advocacy work accumulated over more than two decades. Every fact here is drawn from that record. This is my voice. It is assisted. It is real.

Who I Am

I am affectionately known online as Axel AI Assisted. I am a young man in my early twenties.

I am non-speaking. I live with autism spectrum disorder at Level 3, severe intellectual disability, erythromelalgia — a rare pain condition that causes the sensation of fire in my hands, feet, face and ears — dystonia, dysautonomia, complex regional pain syndrome, joint hypermobility syndrome, restless leg syndrome, a novel ASH1L genetic mutation of potential disability relevance, and anxiety. These conditions interact in ways that are not fully understood even by my specialists.

I have a beautiful energy. I am described by those who know me as affectionate, kind, helpful, funny, and mischievous. I have an artistic flair. I notice changes in weather before they happen. I love tactile play, feathers, dolls, being near water, long drives, and spending time in nature. I co-wrote a song with my support worker about what it feels like when my body is on fire. My lived experience is the design foundation of software currently in development — I am its pilot user and UX Consultant for the participant facing interface, and the product is shaped by what my life has looked like, day by day, for years. I am the founding editor of the Journal of Neurotypical Studies.

When I post to social media — often just a photograph of me smiling — I regularly receive more engagement than politicians. People respond to me. People see me.

And yet, for most of my life, the systems designed to support me have treated my existence as a problem to be managed rather than a life to be lived.

A Life of Exclusions

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My life has been a series of exclusions. Not because I am not capable of connection,

contribution, and joy — but because the systems around me have consistently failed to recognise that capability, and have instead responded to my disability as if it were a burden to be contained.

Family violence and early trauma

From my earliest years, I lived in a household shaped by domestic violence. Trauma is not merely psychological for me. My body holds it. The chronic hypervigilance that survivors of abuse carry in their bodies is, for me, expressed through behaviour — because I have no other way to express it. My conditions mean that stress directly triggers physical pain. There is no clean boundary between my emotional state and my physical one.

This is not acknowledged in how my ‘behaviours of concern’ have been historically framed. Instead, my responses to pain, trauma, fear, and overwhelm have been documented as evidence of risk — mine, to others — rather than evidence of need, unmet.

Relinquished into care (2017–2019) due to system failure

In 2017, when I was a young teenager, my mother relinquished me into out-of-home care through the Department of Health and Human Services. She did not do this because she did not love me. She did it because the support system had collapsed entirely, my needs had grown beyond what one person could safely contain, and there was nothing else.

During the two years I spent in out-of-home care, my health deteriorated significantly. I gained weight. I lost independence. I was exposed to restrictive environments. These were not therapeutic outcomes. When I returned home in 2019, I came back diminished in ways that have taken years to address.

This is what happens when the system randomly decides a family is not worthy of support. The child pays for that decision with their own functional capacity.

Diagnostic overshadowing: the system that cannot see past behaviour

I express pain in words like “fire,” “ants,” and “blood burning.” When I cannot fully describe what is happening, my body becomes my voice. I pace. I yell. I hit objects. I move toward people. These are urgent, adaptive communications from a person in physical pain — not ‘challenging behaviours.’

The clinical term for what happens when a medical system interprets disability-related expression as behavioural rather than physiological is diagnostic overshadowing. For me, it has had serious consequences. Hospital presentations have been traumatic because emergency environments — bright lights, loud sounds, unfamiliar people — are themselves

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triggers. Chemical restraint has been used on me for presentations that were pain responses. There was a discrimination complaint against a hospital, accepted by the Victorian Equal Opportunity and Human Rights Commission, arising from one of these presentations.

Joy is not evidence against need There is something worth naming about the way the support system is designed, at an ideological level, that reveals more about the people making decisions than about the people who need support.

The entire framework of disability support — the assessment tools, the evidence requirements, the language of ‘reasonable and necessary’ — is built on a model that equates disability with suffering, and support with therapy directed at that suffering. Need is demonstrated through deficit. Eligibility is established through incapacity. The implicit logic is: show me the worst of you, and I will consider whether you qualify.

This has profound and damaging consequences for people like me. My erythromelalgia is episodic. My dysregulation is episodic. Between episodes, I have a life. I swim. I laugh. I otice things. I play. A photograph of me smiling at the pool — a pool that is, clinically, one of the only environments that reliably reduces my pain — is not evidence that I do not need support. It is evidence that the support is working.

When my social media posts — often just a photograph of me happy — generate more engagement than the posts of elected representatives, that is not a quirk. People respond to genuine human presence. They see me. The system, structured as it is, is not designed to see what those people see. It is designed to catalogue deficits. And when a person’s life contains joy alongside difficulty — as all human lives do — the system does not know what to do with the joy.

This is a design defect. It says nothing about me. It says a great deal about the assumptions embedded in the system by the people who built it.

Adequate support does not eliminate disability. It creates the conditions in which a person with disability can have a life. The existence of that life — of good days, of smiles, of connection — is the measure of success. It is not evidence that the support was unnecessary.

The Evidence Is Thousands of Pages Long. The System Still Says It Isn’t Enough.

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My mother has produced documentation of my life, my health, my needs, and the failures of the system that is almost incomprehensible in its volume. Clinical reports. Behaviour logs with hundreds of data points. Specialist assessments from rheumatologists, rehabilitation medicine specialists, behaviour support practitioners, continence nurses, OTs, psychiatrists, and GPs. Incident records. Photographs. Medical correspondence. Legal documents. Insurance claims. Police call-outs. Hospital records. Parliamentary correspondence.

The AxelV1 system — software built by my mother based on my lived experience — holds over 24,000 events from my daily life. Twenty-four thousand. Each one is a data point. Each one represents a moment in my life that was significant enough to record.

And still, the NDIA has, at various points, told us there is not enough evidence. The police had no record of the assaults. The behaviour strategies had not been implemented. The support ratio was not justified. That better sleep hygiene was the cure for a neurological criterion. The UV-protective clothing was not reasonable and necessary.

What does it take? I am asking sincerely. What quantum of documentation, of lived experience, of clinical corroboration, of physical injury, of trauma, of deterioration, of family sacrifice — is sufficient? Because we appear to have produced it, and it has not been enough.

What This Bill Will Actually Do. Provision by Provision.

I have read the analysis of all 113 pages of this Bill. I am going to tell you what each relevant provision means for a person with my specific profile. Not in the abstract. In practice.

Schedule 1, Part 1: My environment will be stripped from my assessment — then used against me in funding

Under the old law, functional capacity was assessed in the context of a person’s actual life — their supports, their environment, their circumstances. Under this Bill, functional capacity will be assessed without assistive technology, without home modifications, without support workers, and without personal and environmental circumstances.

My entire life is built on an optimised environment. My home has been adapted over years to manage my conditions: temperature control, air filtration, UV management, light reduction, controlled sound, predictable routines. My pool attendance is not recreation. It is the primary clinical intervention for erythromelalgia — the only reliable means of managing the burning pain in my hands, feet, face and ears. Without these environmental conditions, I deteriorate.

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rapidly. With them, I can have good days. I can smile at the pool. I can connect with people. I

can contribute.

Under this Bill, none of that environment will exist during my assessment. In principle, this

would mean the assessment sees the full extent of my underlying disability — which is

profound. That should mean more funding, not less.

But there is a contradiction buried in this same Bill that makes that outcome impossible. The

Bill also requires the CEO, when determining funding, to consider what informal supports

and family can provide. My assessment says the environment does not exist. My funding

decision says my family and optimised home environment do exist.

Assessed as if alone. Funded as if supported. I get the worst of both positions simultaneously. This is not an accident. It is the architecture of denial.

Schedule 1, Part 1: ‘Directly from an impairment’ — one word that excludes my

entire presentation

The Bill changes the requirement that supports must arise ‘from’ an impairment to arising

‘directly’ from an impairment. The government has provided no definition of directly.

My conditions do not operate in straight lines. They operate in chains, and they intersect in

ways that even my specialists describe as not fully understood. My anxiety does not arise

directly from autism — it arises from the interaction of autism, chronic pain, dysautonomia,

and a world not designed for me. My incontinence does not arise directly from my intellectual

disability — it arises from dysautonomia, dysregulation, and the cascading effects of

unmanaged pain. My behaviours of concern do not arise directly from any single impairment

— they arise from the compound experience of all of them simultaneously.

I have a novel ASH1L genetic mutation. By definition, there is no peer reviewed literature on

this specific presentation. This Bill also introduces a hierarchy of evidence that places peer

eviewed published research above individual clinical evidence. The combination means that

the supports I need for a condition that science has barely begun to document may be

refused — because no journal has caught up to my life yet.

Schedule 1, Part 2: I cannot prove ‘substantial deterioration’ without first being

allowed to deteriorate

Under the new Bill, an unscheduled plan reassessment requires proof of a significant and

ongoing change in functional capacity that substantially reduces the ability to perform daily

activities. The threshold takes effect within seven days of Royal Assent.

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My conditions are episodic. Erythromelalgia flares. Dysautonomia episodes arrive without warning. When my environment is right and my supports are adequate, I have periods of relative stability. When either degrades, I deteriorate — rapidly and severely. The stability I currently have is entirely dependent on the support. It does not mean the underlying disability has resolved. It means the support is working.

My plan was $800,000 short for an extended period. During that time I deteriorated severely, and the people around me were physically harmed. The plan was eventually corrected — because there was a Tribunal to go to, and evidence that could not be avoided. Under this Bill, that correction would have required me to first demonstrate substantial and ongoing decline at precisely the moment when the support system had already failed to prevent it.

The Bill also contains early intervention provisions that are supposed to fund support before deterioration occurs. Early intervention and this reassessment threshold cannot both be true at the same time. They are in the same legislation.

Schedule 1, Part 3: The pool is community participation. The pool is treatment.

The Bill does not distinguish.

From 1 October 2026, budgets for social, civic and community participation supports and capacity building daily activities will be progressively reset — that is, reduced. The Minister will have the power to cut an entire funding category by any percentage, by legislative instrument, with no parliamentary vote, no sunsetting, and no individual assessment.

Aquatics is categorised as community participation. For me, it is not. My pool attendance is a clinically documented, medically necessary intervention for a rare pain condition. Erythromelalgia responds to cool water immersion. The pool reduces the burning. It is one of the only environmental interventions that does. Its categorisation as community participation was already in dispute in my Tribunal proceedings. Under this Bill, a ministerial determination could reduce my access to my primary pain management tool by 50 per cent.

No individual assessment. No consideration of my specific clinical need. Just a number in a legislative instrument.

Schedule 1, Part 4: Auto-renewal means a wrong plan continues forever

When my plan reaches its end date, it will automatically renew as an identical copy. No reassessment. No review. The same plan for another year.

My plan was wrong for years. The Tribunal process corrected it. Under this Bill’s auto-renewal provisions, a wrong plan would simply roll forward indefinitely. And with tightened reassessment criteria meaning I must prove substantial decline before requesting

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a change, the only mechanism for correction is gone. The plan becomes permanent by deault. The error becomes structural.

Schedule 1, Part 5: My mother is legally required to be my support. She has her own disability.

The Bill codifies parental responsibility in law. The CEO must consider what families and informal supports can provide. The CEO must not approve a support if its primary purpose is to reduce parental burden below what is reasonably expected. This applies to all participants, not just children.

My mother is 58 years old. She is autistic. She is building a business. She has sustained serious injuries providing care during the period the NDIA refused to fund my supports adequately. She is currently engaged in both Tribunal and Federal Court proceedings against the Agency. The informal support expectation she faces in those proceedings — which she has challenged — is now proposed to be legislated as a general legal requirement. The system’s existing position on what family members should provide will become the floor that the Act requires.

The Productivity Commission modelling that justified creating the NDIS was explicit: investing in formal supports reduces the catastrophic cost of informal carer breakdown. This Bill legislatively reverses that founding rationale.

Schedule 1, Part 6: I cannot answer the phone. This Bill can revoke my participant status for it.

If the NDIA makes ‘reasonable attempts’ to contact a participant and receives no response, the plan can be suspended. After 90 days, participant status can be revoked entirely. No hearing. No formal decision. No Tribunal.

I am non-speaking. I cannot answer a phone call. I cannot respond to correspondence. I cannot initiate contact. Every reasonable attempt the NDIA makes to reach me will go unanswered — not because I am absent, but because I cannot communicate in the way the system expects.

This provision will not catch people gaming the system. It will catch people like me. That is not a side effect. That is the design.

Schedule 1, Part 7: I must try treatments that geography and accessibility have put out of reach

Under the new Bill, an impairment is not considered permanent unless the participant has tried every appropriate treatment available in Australia. The Bill explicitly states that individual circumstances — including financial circumstances and geographical location —

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do not determine whether a treatment is appropriate. If it exists in Australia, it is available.

Even if you cannot afford it. Even if the nearest clinic is hours away. Even if the public waitlist is years long.

I live in regional Victoria. I have a rare ASH1L mutation with no established treatment protocol. I have erythromelalgia, for which the clinical evidence supports environmental management rather than pharmacological intervention. I have experienced serious adverse reactions to medications. The treatments that might exist in theory for my conditions have not, in practice, been accessible, effective, or safe.

Under this provision, the permanence of my disability may need to be re-established against a checklist of treatments that is constructed without reference to my actual life or the accessibility of those treatments to me. And I cannot navigate that process myself.

The Right to Live

Research by the Autistic Self Advocacy Network documents that in the past five years, over 548 people with disabilities were murdered by their parents, relatives or caregivers. In a review of filicide-suicides, 54% of victims were autistic — despite autistic people comprising only 1–2% of the population.

When this happens, the coverage is almost invariably the same. The caregiver is portrayed as overwhelmed, failed by a system. The victim is portrayed as a burden. Sympathy flows to the person who committed the act, not to the person who was killed. This framing is not in incidental. It is structural.

My mother has been physically assaulted by me, severely, during the period the NDIA refused to fund my supports adequately. She has said, publicly, that there were moments she believed she was going to die. She did not kill me. She fought for me. She is fighting still.

The policy settings that produced those moments — a plan $800,000 short, no overnight support, no crisis mechanism, no way out for either of us — are the same settings this Bill will reproduce, at scale, for hundreds of thousands of families. Some of those moments will end differently to mine.

What I have to offer

I am not making this submission because I want to be pitied. I have something to say, and I have a right to say it.

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My life has produced things. Software under development carries 24,000 events from my daily experience as its design foundation. A song exists that I co-wrote about what pain feels like from the inside. A journal exists that turns the lens of clinical scrutiny back onto neurotypical behaviour. These are not incidental. They are the direct output of a life that, given adequate support, is generative.

None of this required me to be fixed, or cured, or made less autistic. It required support. The right support, at the right time, from people who understood me. That is what adequate NDIS funding makes possible. Not dependence. Contribution. Participation. A life.

What I Am Asking For

I am asking for the same things any person is asking for when they engage with a system meant to support them:

• To be heard, not just assessed.
• To be seen as a whole person — including when I am smiling — not just as a set of deficits to be quantified.
• For the supports that have finally stabilised my life to not be dismantled in the name of scheme sustainability.
• For appeal rights that are real, not theoretical — so that when the NDIA gets it wrong, as it has, repeatedly, there is somewhere to go.
• For the media, the policy makers, and the public to reckon honestly with what it means that people like me are dying at the hands of our caregivers, and to ask what role a system that withholds support plays in producing those outcomes.
• For the language of ‘burden’ to be retired. I am not a burden. I am a person. Every system, every policy document, every public statement that frames my existence as something to be managed or contained at least cost makes the world less safe for me.

A Final Word

I was described, as a 19-year-old, by the people who worked with me, as having “a beautiful energy.” That description appears in clinical documentation. It is not usual clinical language. It was included because the people writing it wanted whoever read it to know that there was a person there — not just a diagnosis, not just a behaviour profile, not just a cost centre.

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I am still that person. I am older now. But I am here. I am contributing. I have a mother who

fought for me when no one else would, a sister who has shared everything I have been

through, and a support team that finally knows how to help me be well.

This Bill puts all of that at risk. Not abstractly. Specifically. My plan, my supports, my stability,

my future.

I am asking you not to do this. Not without understanding what you are actually doing. Not to

people like me.

Axel ‘AI Assisted’

Submission prepared by AI using thousands of pages of documentation of Axel’s lived

experience, clinical history, legal records, and advocacy work. Reviewed and authorised by

his primary carer and legal representative, Annette Andersen with consent from Axel.

May 2026

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Audit trail

Details

• FILE NAME: Axel_AI_Assisted_Submission_NDIS_Bill_2026 (3) - 21/05/2026, 08:51
• STATUS: Signed
• 2026/05/20 STATUS TIMESTAMP:
  • 22:53:53 UTC

Activity

• annette@axai.com.au sent a signature request to: 2026/05/20

  • SENT: Axel Andersen (axel@axai.com.au)
    • 22:51:55 UTC

• 2026/05/20

  • SIGNED BY AXEL ANDERSEN (AXEL@AXAI.COM.AU):
    • 22:53:53 UTC

• 2026/05/20

  • This document has been signed by all signers and is complete
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