National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 10
SUBMISSION National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submitted by: Annette Andersen Capacity: NDIS Participant | Primary carer | Founder, aXai Pty Ltd Date: May 2026
About Me
I am Annette Andersen. I am a 58-year-old autistic woman, primary carer to two adult
children who are NDIS participants, and the founder and architect of aXai Pty Ltd, a software
engineering and AI consultancy. I make this submission in my own name, as a person with
disability, as a carer, and as someone who has spent the last several years living through
exactly the kind of systemic failure this Bill claims to be fixing — while the Agency that
caused it faces me as an adversary in both the Administrative Review Tribunal and the
Federal Court.
My son is affectionately known on LinkedIn as ‘Axel AI Assisted’. He is a young man with
profound and complex disabilities: non-speaking autistic, severe intellectual disability,
peripheral erythromelalgia — a rare and accepted pain condition that causes the sensation
of fire in his hands and legs — dystonia, dysautonomia, complex regional pain syndrome,
restless legs syndrome, and a novel genetic mutation of potential pharmacological
significance. He is 6’ 3” and 107kg. He has the emotional and communicative capacity of a
toddler. He does not self-advocate in the conventional sense. He communicates through
behaviour. He cannot organise his own supports. The idea that he could is, bluntly, absurd.
My daughter is also an NDIS participant. She lived in the same home, through much of the
period described in this submission, exposed to the same violence. She is currently living in
temporary accommodation.
This is not a submission about sustainability in the abstract. This is a submission about what
happens to real people when a system fails — and about what this Bill will do to ensure that
failure becomes the structural norm, with no avenue of recourse.
What 18 Months In Our Home Actually Looked Like
For approximately 18 months, I fought the NDIA over my son’s support needs while
simultaneously living in a situation that no system in this country is designed to address
honestly. The NDIA’s position, throughout, was that his needs were not as described, that
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the evidence was insufficient, and that the requested supports were not reasonable and
necessary.
The reality was this: his plan was approximately $800,000 short of the support he required.
During the period that shortfall existed, he deteriorated. The violence escalated. My daughter
and I were subjected to what I can only describe as non-stop, high-intensity physical assault
over an extended period — in our own home, with no ability to leave, requiring 6 police
officers to remove him from the property, temporarily until the next round, and no funded
support to ensure no paid worker was left alone in this situation.
I was assaulted on at least six occasions so severely I believed I was going to die. Each
of those occasions occurred in the middle of the night or the early hours of the morning,
when there was no funded awake overnight support. He overpowered me. I have lost count
of lesser incidents. Research is clear that women, particularly mothers, bear a
disproportionate risk of serious injury and death in these circumstances. The policy settings
that produced this outcome — a plan that required a mother to fill an $800,000 care gap —
do not exist in a vacuum. They discriminate.
The image below shows one of the bite injuries I sustained during this period. I was unable
to have it properly treated. I could not leave the house. I could not leave the workers alone. I
could not leave my daughter.
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Bite injury sustained during the period of inadequate support funding. August 2025. Untreated.
The system provided no mechanism that acknowledged the reality we were living. Producing
this image again and again is not something I do without personal impact. I do it because
decision-makers need to understand what ‘inadequate support’ looks like on a person’s
body.
My injuries during this period included serious physical harm. The process continued. The
hearings were scheduled, rescheduled, prepared for at enormous effort. Then, days before
the hearing was due to proceed, his plan was nearly tripled from the original plan under
review.
I do not know what to make of that timing, other than to note that it is consistent with a
system that imposes maximum attrition on the people who use it, and treats compliance as
something to be achieved at the last possible moment when the evidence can no longer be
avoided.
What I Did During That Period
During the 18 months I have just described, I completed a Graduate Certificate of
Software Engineering at Torrens University Australia, conferred June 2025. I completed
it while providing near-continuous care, while managing active litigation, while recovering
from serious injuries I could not get treated, while recovering from major surgery, and while
running on whatever hours remained.
During the same period, I trained myself in AI-accelerated software development and built a
methodology from scratch. I founded aXai Pty Ltd, a software engineering and access
consultancy. I have since brought a number of innovative products to market, including tools
for the disability sector: Savanax/Dialectica (a novel reasoning engine for complex decision
making and autonomy support built on over 24,000 events from my son’s own life), aXread
(Easy Read AI Assistant), and Context Scanner (to support the AI Accelerated
methodology).
I co-founded DSX (dsx.org.au), a member-owned cooperative of small-to-medium NDIS
registered providers. I have been a pitch finalist. My son is credited publicly as a UX
Consultant and Advocate. His lived experience has literally shaped the software. This is not
metaphor — it is documented and public.
I have created pathways to meaningful employment for both of my children who are NDIS
participants. I have done this as a person with autism, largely on a volunteer basis, because
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it does not matter how innovative you are, how fast you deliver, how much you contribute —
if you are autistic in the Australian employment market, you are already presumed to be lazy,
unreliable, and unmarketable. That presumption is not accidental. It is the legacy of policy
and public discourse that has never been honestly confronted.
I say this not to seek praise but to make a factual point: I did all of this while the Agency
continues to fight me over things like UV-protective clothing for a man whose accepted
medical condition causes burning pain in response to UV exposure.
The Home We Are Living In
During the period of the $800,000 support gap, my son caused significant damage to our
home. He could not be removed without 6 police officers. His disabilities and the absence of
adequate support meant he was in a state of chronic pain and dysregulation. The damage
was extensive and ongoing.
The photos below show two aspects of that reality. The first is one of countless wall impacts
throughout the house. The second is the makeshift kitchen we set up outside — so that
cooking smells and sounds do not trigger his sensory system and escalate into an episode.
One of many wall impact sites throughout the home. This damage remains unrepaired. August 2025.
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Makeshift outdoor kitchen. Cooking indoors triggers sensory dysregulation. The TV was removed from inside for the same reason. August 2025.
I made an insurance claim. The claim was paid in limited scope. The repairs have not been
completed — because my son cannot be removed from the home, and construction activity
itself is a risk. The bathroom remains unusable. The floor was replaced to address swelling
that was preventing wardrobe access. Build costs have risen since the original payout. My
insurance premium has nearly quadrupled.
I am, in other words, repaying money to an insurance company — in installments — for
damage caused during the period when the NDIA refused to fund the supports that would
have prevented the deterioration that caused the damage. And the NDIA continues to
behave as if my son and I contribute nothing, produce nothing, and cost nothing beyond
what it chooses to fund.
An OT report is pending recommending major bathroom modifications and like every other
piece of evidence I have produced, thousands of pages, I expect it will be ignored. There is
no mechanism in the current system, and nothing in this Bill, that addresses this kind of
cascading harm.
What This Bill Will Do
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- Eliminate or curtail the only appeal mechanisms that work The single tool that produced any outcome for my son was the Administrative Review
Tribunal. An 18-month fight, at enormous cost to my health, my finances, my capacity to
function, and the safety of my family — and ultimately, the plan was changed. That is the
system working. Badly, slowly, at brutal cost — but working.
This Bill progressively removes the conditions under which that process is meaningful.
Tighter unscheduled reassessment criteria, restricted request rights, budget resets
proceeding under existing planning arrangements before new framework planning is even in
place — these are structural barriers to the same process that, after 18 months, produced an
adequate plan. They will ensure that families like mine hit every wall earlier, harder, with less
ability to challenge. The only alternative in these situations is incarceration of the person
because of their disabilities.
- Reset budgets for supports that are critical, not peripheral The Government’s messaging is that budget resets from 1 October 2026 will not affect
‘critical care and daily living.’ The supports that were disputed in our case — were all framed
by the NDIA as non-critical, non-reasonable, non-necessary. The Agency’s definition of
‘critical’ is not the same as a clinician’s definition nor emergency services who also provided
evidence during this period. Under this Bill, the mechanism by which those definitional
disputes are resolved will be substantially narrowed.
- Commission SIL in a way that removes individual arrangement flexibility The proposed commissioning of Supported Independent Living from July 2026 will affect my
son directly. His support needs are complex, medically fragile, and require workers who
know him, are trained in his specific condition, and can provide 2:1 awake overnight support.
A commissioned SIL model that prioritises standardisation over individual complexity will, in
practice, make it harder to maintain the support arrangements that have finally stabilised
him.
- Expand mandatory registration in ways that may harm, not help In practice, for a family like mine — where the pool of workers willing and able to support a
high-complexity young man in a regional area is already vanishingly small — mandatory
registration requirements for unregistered providers will shrink an already inadequate
workforce further. I need to use unregistered providers as a last resort, not as a rule. That
distinction matters and is not acknowledged in the Bill’s framing.
- Remove plan rollovers and create new financial cliffs
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Plans must be spent within the plan period. My son’s condition is episodic. There are periods
of relative stability — like now, following the plan tripling — where we can build reserves
against the next acute episode. Under the proposed changes, that capacity disappears.
Every plan renewal becomes a financial cliff.
A Question That Deserves an Honest Answer
Has the Minister ever met anyone with profound autism and severe intellectual disability?
Not in a controlled setting. Not in a presentation. In a real moment — at 3am, in a home with
a broken bathroom and a makeshift outdoor kitchen, with a young man in severe pain who
does not understand what is happening to his body and thinks the nearest person caused
this, with no funded support and no way out.
The idea that supports for someone like my son ‘organise themselves,’ that market forces
will produce equitable and consistent plans, that tightening assessment criteria will improve
outcomes for people at the extreme end of complexity — these ideas are not serious. They
are the kinds of ideas produced by people who have never been in the room.
What I Am Asking For
I am not asking for the NDIS to be unsustainable. I am asking for the following:
• A genuine carve-out for high-complexity participants that is defined clinically, not administratively, with independent verification — not NDIA self-assessment.
• Preservation of meaningful appeal rights at every stage of plan reassessment, including for budget resets commencing October 2026.
• Explicit acknowledgement in the Bill that primary carers, particularly women and carers with disability, bear a documented and disproportionate risk of harm and loss of social and economic participation when supports are inadequate — and that this risk is a form of structural discrimination.
• A mechanism that accounts for cascading harm caused by past support failures — including property damage, health impacts, lost income, and debt — before new eligibility criteria are applied.
• A commitment that the commissioned SIL model will not override existing individual arrangements for participants with complex medical needs without independent clinical review.
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• Honest public acknowledgement that the framing of this reform as being about ‘fraudsters and shonks’ has caused direct harm to the reputations and livelihoods of disabled Australians who fight for legitimate supports — including people like me, who now face employment discrimination compounded by the public narrative this Government has chosen.
Conclusion
I am 58 years old. I work around the clock to build a business that creates futures for my
children and others like them. I am desperate to establish independence — for them and for
myself. I am trying to leave a home that is difficult for me to function in, in a town that cannot
support us, to relocate to Melbourne where my business is gaining traction.
Before I can do any of that, I now face the real and serious prospect that this Bill will drag me
back into providing 24/7 care in a dangerous situation, with no adequate funded support and
no meaningful avenue of appeal.
That is not a sustainable NDIS. That is the same system that almost destroyed us —
repackaged as reform.
I urge the Committee to hear from families in situations like mine before this Bill proceeds.
Not to hear that the system is hard. To hear what hard actually looks like.
Annette Andersen Founder & Architect, aXai Pty Ltd | axai.com.au May 2026
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