Submission 87
Submission
Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for
Future Generations) Bill 2026
Location: Brisbane, Queensland
Capacity: Private citizen — mother of two autistic children
Date: 21/5/2026
- About me I am a mother of three children. Two of them my daughter and my son are autistic. I live
in Brisbane, Queensland. I am a consumer representative on the
, and I run a small business under the name . I hold
qualifications in spatial science and communication.
I am an NDIS-literate parent. I have navigated two diagnostic journeys, two NDIS access processes,
multiple plans across multiple years, a Functional Capacity Assessment, and the daily work of
organising therapies for two children with different presentations of the same condition. I write this
submission in a personal capacity, drawing on lived experience.
I support reform of the NDIS. The scheme has real problems that call for serious legislative attention.
But the Securing the NDIS for Future Generations Bill 2026, as currently drafted, will not deliver reform
that helps families like mine. It will hurt us. It has been rushed. It has not been adequately co-designed
with the people who will live under it. It needs to be re-thought.
- What this bill will mean for my children The remainder of this submission addresses specific provisions of the bill and what each will mean for
my two autistic children — and for the tens of thousands of families like ours.
2.1 The new functional capacity test (Schedule 1, Part 1, Section 9B)
The bill redefines functional capacity as a person’s ability to undertake activities without assistance,
aids, or modifications, and in a context that excludes their environmental and personal circumstances.
This is the wrong test for autistic children.
When was assessed by her paediatrician at age two speech-delayed, fewer than ten spoken
words she presented as engaging and friendly, with quirks. The paediatrician gently raised autism. I
dismissed it. The signs I would later recognise lining cars up, banging them on tables, fixating on an
orange clock, hiding from sounds I could not hear, refusing certain textures were not visible in the
structured, low-stimulation, time-limited environment of a clinic.
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Autistic children mask. They perform. They comply, briefly, in unfamiliar settings. A functional capacity
test conducted as though no environment exists will systematically under-rate the disability of every
autistic child who can hold themselves together for an assessment but cannot function in school, in
shopping centres, or in their own home when overwhelmed. This is not a hypothetical concern. It is
the daily reality of my family. It will be the reality of every autistic child assessed under the new
framework.
2.2 The “appropriate treatment” requirement (Schedule 1, Part 8, Section 25A)
The bill provides that an impairment will not be treated as permanent unless all appropriate treatment
has been undertaken, and explicitly removes financial hardship and geographic distance as legal
excuses.
path to formal diagnosis took eighteen months from first referral. Her ADOS assessment alone
cost $1,500 out of pocket. We were extremely lucky to have access to a private paediatrician who
closed her books to new patients shortly after we got in. Many families do not have $1,500. Many
families do not live within reach of a paediatrician taking new patients. Many families wait years.
Autism is not a condition that is treated in the sense the legislation appears to envisage. There is no
course of medication after which autism resolves. Imposing an “appropriate treatment” gate before
recognising autism as permanent — while explicitly excusing nothing will trap families in years of
unfunded, expensive therapy before they can access the supports that would have been useful from
the start.
2.3 The reassessment threshold and 90-day timeframe (Schedule 1, Part 2, Section 48A)
The bill requires that an unscheduled plan reassessment may only be requested where there has been
significant change to a participant’s ongoing support needs, and extends the decision-making window
from 21 days to 90.
I want to be direct with the committee. My children’s plans have not been formally reassessed in
years. The funds roll over. I have not pushed for a review, because I am afraid that if I do, supports will
be cut or eligibility removed. My speech therapist tells me she has seen this happen to other families
on her caseload.
This is the system working as a deterrent against its own participants.. I am NDIS-literate. I aminformed and capable. And I am too afraid to engage in a review process, because the cost of getting
it wrong is my children losing supports they have built relationships around for more than two years.
The new bill removes my ability to keep my head down. And the new “significant change” threshold
will mean that when I want a review when moves to high school, when begins school,when puberty arrives I may not be able to get one. Ninety days, rather than twenty-one, is too long to
wait for a child in crisis.
2.4 Value for money and “lower-cost comparable supports” (Schedule 1, Part 6, Section 34)
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The bill requires the CEO to consider whether a lower-cost comparable support exists before funding
a particular support.
For autistic children, therapists are not interchangeable. My children have been with their current
therapists for over two years each. When a therapist takes maternity leave and we are forced to
change, we lose approximately six months as the new therapist builds rapport, the children adjust,
and progress backtracks. Six months is the cost in time. The cost in progress is greater still.
A bill that authorises the substitution of one therapist for another on the basis of cost or one form of
therapy (group, generic) for another (one-to-one, specialised) — does not understand what
intervention with autistic children actually looks like.
2.5 “Alternative supports” and the foundational supports model (Schedule 1, Part 9, Sections 21(1)(d) and 25B)
The bill empowers the Minister to declare certain supports as alternative to the NDIS, with the
consequence that participants may be denied access or removed from the scheme on that basis.
In New South Wales, the Thriving Kids initiative community-led parenting programs is being rolled out
as one such alternative. In Queensland, where I live, no equivalent exists. If the alternative supports
mechanism is activated and my state has not built capacity, Queensland families will be pushed off
the NDIS into a void.
Parenting programs for me are not a substitute for therapy for my children. I already complete free
university-based parenting programs and they are genuinely good. I value them. They do not replace
what my children’s therapists provide — and the bill should not pretend otherwise.
2.6 Automation of administrative action (Schedule 3, Part 2, Section 59B)
The bill authorises automated decision-making in respect of administrative actions, including those
involving evaluative judgement, discretion, and states of mind being formed.
The committee will be aware of the consequences of Robodebt. Decisions about funding for disabled
children should not be made by computer programs. The cost of getting these decisions wrong is
borne by children and their families — and it is not recoverable.
- The cost this system already extracts from my family The system as it currently operates already imposes a heavy, invisible toll on families before any of
these amendments. Some of that toll, in my family, looks like this.
I barely work. I run a small business, but I cannot give it the attention it requires while I am in constant
flight mode organising appointments, gathering evidence, chasing workforce, second-guessing every
decision I make. I need to work to cover rising bills. If I work, I cannot give the children the attention
they need. There is no good option.
Submission 87
My older daughter who is fourteen and has no diagnosis, has become a young carer. She has
been unable to commit to netball or other team activities because our family cannot reliably be in
high-energy environments the sensory cost to her younger siblings is too great. Her childhood is
shaped by a system that does not see her.
Earlier this year, left school grounds. My first instinct was to remove her from mainstream
schooling immediately. Several phone calls with my NDIS-funded team her therapists, her support
coordinator helped me work through it calmly, and we arrived at a plan that has worked brilliantly.
That moment is what a properly resourced insurance scheme should produce: a coordinated response
to a crisis that prevents a worse outcome. It is precisely the kind of response that the bill’s “alternative
supports” and “value for money” provisions will undermine.
This is not abuse of the scheme. This is the scheme doing what it was built to do.
-
Recommendations I respectfully ask the committee to recommend:
-
That the bill not be passed in its current form. It has not been adequately co-designed with the families and disabled people it will affect, and its consequences for autistic children in
particular have not been seriously consulted on.
- A genuine co-design process with families of autistic children, autistic adults, and the wider disability community, with sufficient time for meaningful input — not the truncated timelines
that have characterised consultation on this bill.
- Substantial amendment to Section 9B (functional capacity) to require assessment in the contexts in which the person actually lives — including sensory environments, familiar
routines, and supports — rather than abstracted from them. This single change would prevent
the systematic under-rating of autistic children.
- Removal or substantial amendment of Section 25A (appropriate treatment) for conditions, including autism, for which “treatment” in the medical sense does not resolve the impairment.
At minimum, financial hardship and geographic isolation must remain legal grounds for
exception.
- Retention of the participant’s existing right to request a reassessment (Section 48A) without a “significant change” threshold, and retention of the 21-day decision window. The current
problem is not that participants ask for reviews too readily the problem is that participants
are too afraid to ask at all.
- No activation of “alternative support” provisions (Section 25B) without demonstrable capacity in each state and territory, audited independently, and with continuity provisions for
participants already engaged with NDIS-funded therapists.
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- Strict limits on automated decision-making (Section 59B), excluding any decision that involves evaluative judgement, discretion, or assessment of a participant’s state of mind. The
Robodebt Royal Commission’s recommendations on this point must be respected.
- Closing I am one mother. The committee will receive many submissions from many parents and many disabled
adults. We are not exaggerating. We are not asking for more than the scheme was designed to
provide. We are asking that the system that exists to support our children not be re-engineered, in
haste and without consultation, into something we fear.
I thank the committee for the opportunity to make this submission. I am willing to be contacted for
further information, or to appear before the committee, if that would be of help.