Submission 4225 — Name Withheld — NDIS Future Generations Bill

TO THE SENATE COMMUNITY AFFAIRS LEGISLATION COMMITTEE

Please read this page before turning to the rest of my submission.

On Wednesday 18 June 2025, I came home from a meeting with my son’s treating occupational therapist

about how we were going to make a 53 per cent cut to his NDIS funded supports actually work in our

household. By the time I walked through my front door I was suicidal. I scared the life out of my husband. He

rang the occupational therapist demanding to know what had happened in that meeting. I tried to call my

GP, Dr , and my treating psychologist. My husband was calling people. I did not take my life

that night, but I was there. It was the lowest point in my life. I saw Dr on Friday 20 June 2025, and

my treating psychiatrist shortly after. It is on the clinical record across all three providers. My son has a

permanent chromosome 6q15–q16.3 deletion. The NDIA could not, when later pressed in a recorded call,

explain how the figures in his plan had been calculated.

My first formal complaint about that plan was not lodged until 2 July 2025. The harm preceded the complaint.

The harm was caused by the planning decision itself.

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

Bill 2026 — does not address that. It writes the worst of the Agency’s current administrative practice into

primary legislation. It gives the Minister a power to cut funding for whole groups of supports by percentage,

expressly stating the result can be that funding is less than the cost of a reasonable and necessary support.

It auto-renews underfunded plans for 12 months without any reviewable decision. It writes into the Act a

statutory presumption that supervision, personal care, transport, emotional support and behavioural

support of a child with disability are parental responsibility — making everything a support worker does

presumptively the parent’s job.

In doing so, the  Bill places the Commonwealth Parliament in direct tension with  its own Disability

Discrimination Act 1992. It imposes a condition on the parents of children with disability that no parent of a

child without disability is required to meet — in the worst sustained cost-of-living pressure Australian

households have faced in a generation. It will fall hardest on women, single parents, and regional and remote

families. It is indirect discrimination by association, in statutory form.

Our family absorbs, on present figures, roughly $120,000 per year in unfunded disability-specific costs and

lost workforce income — the cost of running three loads of disability-specific laundry every day, of driving

11,000+ km a year to Brisbane for specialist physiotherapy the NDIS does not cover, and of my full forgone

teaching salary because the disability care load this Scheme has declined to fund leaves no hours in the day

for paid work. We absorb it because we can. Most families cannot. Most single-parent families cannot even

contemplate it. The Bill makes this the floor — not the ceiling — of what is expected of parents.

If this Bill passes in its current form, the Committee will, in five years, be inquiring into why so many carers

of children with disability presented to mental health services in 2026 and 2027, and why so many of them

stopped working. I would rather the Committee asked that question now — before the Bill, not after.

This submission does not stop at objection. The Bill is presented as a sustainability measure, and the

Parliamentary Budget Office’s own figures show that the difference between one percentage point of NDIS

growth one way or the other is between $8 billion and $19 billion by 2034–35. That is a real fiscal question,

and it deserves a real answer. I have set out, in Part B of this submission, an alternative reform path that

addresses sustainability through consistency, integrity, capacity-building, and early investment — without

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writing indirect disability discrimination into Commonwealth law. I would welcome the opportunity to discuss

it with the Committee.

I have set out the detailed argument in the pages that follow. I am writing under my own name. I am available

to give evidence in any format the Committee finds useful.

Parent and child representative for an NDIS participant

Toowoomba, Queensland

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Submission to the Senate Community Affairs Legislation

Committee

Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future

Generations) Bill 2026

Submitted by:

Capacity: Parent and child representative; self-managing plan nominee for an NDIS participant (a child with

a chromosome 6q15–q16.3 deletion). Qualified senior teacher with a specialisation in inclusive education.

Date: May 2026

Submission type: Personal — based on lived experience as a parent and carer, supplemented by professional

experience in the education of children with disability across regional, remote, and First Nations communities

(Cunnamulla, Mount Isa, Thursday Island, Toowoomba).

Executive summary

I write as the mother of a child with a permanent chromosomal deletion, as a fully qualified senior teacher

with a specialisation in inclusive education, and as a person who has now spent the better part of a year

inside the NDIS complaints process attempting to obtain a justification for why my son’s funded supports

were cut by 53 per cent at his most recent plan reassessment.

My central submission is this: there is, on paper, very little wrong with the National Disability Insurance

Scheme Act 2013. What is wrong is how the Agency is administering it. Decisions are being made that the

Agency cannot, when pressed, explain. Guidelines are not being followed. Clinical evidence from treating

health professionals is being dismissed without engagement. Underutilisation is being used as a pretext to

cut hours regardless of why supports were not used. Parents are being told that disability-specific care is

ordinary parental responsibility. And complaints processes do not produce findings, only closures.

The Bill before this Committee does not fix any of that. It does the opposite. It legislates into the Act the most

damaging aspects of how the Agency is already behaving in practice — and gives the Minister and the CEO

new instruments to do more of it.

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In particular, this Bill:

• Authorises the Minister to reduce, by legislative instrument and by percentage, the funding component for groups of supports in existing plans, while making explicit that the result may be that funding is less than the total cost of a reasonable and necessary support (new section 34A);

• Replaces participant-centred reassessments with automatic 12-month rollovers of the same plan (new section 50A), making it possible for a participant to be locked into an underfunded plan for a year and a day with no reviewable decision attached to the renewal;

• Restricts a participant’s ability to request an unscheduled reassessment by imposing new statutory thresholds of ‘significant’ and ‘ongoing’ change (new section 48A);

• Embeds in primary legislation a presumption that parents are responsible for substantial care of children with disability, defined to include supervision, personal care, transport, emotional support and behavioural support — without any structural requirement to identify what falls outside that, which is the disability-specific care that the Scheme exists to fund (new subsections 34(1G) and (1H));

• Bars supports from being approved where the CEO concludes their primary or substantial purpose is to ‘reduce burdens on parental time’, ‘improve household efficiency’ or ‘give effect to a parent’s preference for supports to be provided otherwise than by parental care’ (new subsection 34(1J)) — language which, in practice, will be used against any parent who asks for a support worker;

• Tightens the definition of ‘permanence’ so that an impairment is not permanent unless the person has undertaken all appropriate treatment, and explicitly states that treatment may still be considered appropriate even where the person’s financial circumstances or geographical location restrict access to it (new section 25A);

• Adds a statutory rule of evidentiary hierarchy under which the CEO may decide that they are not satisfied a support is effective and beneficial if there is limited peer-reviewed and ‘generalisable’ research, even where there is direct clinical evidence of outcomes for the individual participant (new subsection 34(1F));

• Confers automated decision-making powers that allow administrative action under the Act to be taken by a computer program (Schedule 3, Part 2).

Beyond its individual provisions, the Bill — read as a whole — places the Commonwealth in direct tension

with its own anti-discrimination law. Sections 6 and 7 of the Disability Discrimination Act 1992 (Cth) prohibit

indirect discrimination, including indirect discrimination by association — that is, against the parents and

carers of people with disability. The Bill’s parental responsibility provisions, in particular, impose a condition

on the parents of children with disability — that they personally deliver the disability-specific care work the

Scheme has declined to fund — that no parent of a child without disability is required to meet. In the current

cost-of-living environment, in which inflation, energy costs, and interest rates are all rising faster than wages,

that condition is not reasonable. It will fall hardest on women, on single parents, and on regional and remote

families. The Bill should not pass without an explicit Human Rights Commission assessment of these

provisions.

This Bill is not a sustainability measure. It is a cost-shifting measure. The costs are being shifted from a

Commonwealth scheme onto unpaid family carers — overwhelmingly mothers — who are already absorbing

what the Scheme does not fund, at the price of their workforce participation, their health, and in some cases

their lives.

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I am one of those carers. I am writing this submission because I am one of the lucky ones — and because I

know how very lucky I have to be for my son to receive even what he currently gets.

This submission is in two parts. Part A sets out why the Bill, as drafted, should not pass — through lived

experience, provision-by-provision legal analysis, and a costed account of what is being transferred onto

families. Part B sets out an alternative reform path. The Parliamentary Budget Office’s figures show the fiscal

stakes precisely: a one-percentage-point difference in NDIS growth is worth approximately $8 billion to $19

billion by 2034–35. That is a real question, and it deserves a serious answer. Part B proposes one — built on

published budget bands,  specialist planning, real-time payment  integrity, complexity-based  pricing,

foundational supports made operational before NDIS access tightens, opt-in capacity-building packages, and

an early-investment economic design grounded in James Heckman’s Nobel-Prize-winning work. The Bill is not

the only path to sustainability. It is the worst available path.

PART A

Why this Bill should not pass in its current form

1. Who I am and why I am writing I am the mother of a 10-year-old boy with a confirmed chromosome 6q15–q16.3 deletion. His diagnosis is

permanent, lifelong, and non-reversible. There is no curative treatment. The deletion produces multi-system

impairment across neurological, endocrine, musculoskeletal, gastrointestinal, respiratory, and autonomic

systems. He has documented global developmental delay, DCD, ADHD, executive dysfunction, chronic

hypotonia, faecal and urinary incontinence, hypothyroidism, growth hormone axis dysregulation, oxygen

desaturation overnight, and recurrent faecal impaction. He has substantial functional impairment across all

six NDIS domains.

Professionally, I am a fully qualified senior teacher with a specialisation in inclusive education. I have taught

in some of the most remote and disadvantaged communities in Australia — including Cunnamulla, Mount Isa

and Thursday Island — predominantly in low socio-economic schools with high First Nations enrolments. I

know, in practical detail, what inadequate support for a child with disability looks like in a classroom, and I

know what the long-term cost of it is.

That professional background is relevant for two reasons. First, it means I can read a clinical report, an NDIS

planning document, and a piece of legislation, and identify what does and does not align. Second, it means I

know that even with my training, my literacy in the system, my access to private funds, and the financial

buffer our family business provides to absorb the costs the Scheme refuses to meet, this process has nearly

broken me. I want to be very direct with the Committee about that, because it is the single most important

data point I can offer this Inquiry.

On Wednesday 18 June 2025, I came home from a meeting with my son’s treating occupational therapist

about how we were going to make a 53 per cent reduction in his funded supports actually work. By the time

I walked through my front door I was suicidal. I scared the life out of my husband. He rang the occupational

therapist demanding to know what had happened in that meeting. I tried to call my GP, Dr ,

and my treating psychologist. My husband was calling people. I did not take my life that night, but I was there.

It was the lowest point in my life. I saw Dr on Friday 20 June 2025, and my treating psychiatrist

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shortly after. It is on the clinical record across all three providers. Dr has subsequently confirmed

it in writing. The cause was not my child’s disability. The cause was the NDIA’s planning decision and the

family’s inability to absorb the gap between what was funded and what my son actually needs in order to

function.

The first formal complaint about that planning decision was not lodged until 2 July 2025. The harm preceded

the complaint. The harm was caused by the decision itself.

I am setting this out because I want the Committee to understand the floor it is legislating from — not the

ceiling. This is what is already happening under the existing Act. This Bill makes it easier, faster, and harder

to challenge.

2. What the NDIS does not cover — and what parents absorb Before turning to the Bill itself, I want to put on the record what the existing Scheme — even when it is

working — does not in fact fund. This is the invisible economy that sits behind every reasonable and necessary

supports decision. It is also the economy that this Bill, in multiple Parts, proposes to expand.

2.1 The 53 per cent cut and what it actually meant

At my son’s most recent plan reassessment, his funded therapy and support hours were reduced significantly

across multiple categories. Occupational therapy hours were cut substantially. Physiotherapy hours were

reduced to approximately 10 hours over a 12-month period for a physically impaired child whose treating

physiotherapist requires fortnightly sessions during term and five consecutive days of half-hour sessions

every school holiday for continence work. Speech pathology was reduced. Support worker hours were cut to

5 per week.

The reduction was not justified by any change in my son’s functional capacity. He has not improved. His

diagnosis is permanent. His needs have, if anything, increased as he has grown — incontinence does not

become more socially manageable in a 10-year-old than in a 6-year-old. The reduction was justified by

‘underutilisation’ in the previous plan, despite the fact that:

• Our plan is self-managed and we claim quarterly, not weekly — meaning utilisation figures at the time of review materially understated actual usage;

• We live in regional Queensland (Toowoomba) where there are documented allied health workforce shortages — at the time of the previous plan there was no speech pathologist available locally for an extended period;

• Periods of underutilisation had been explained in writing to the planner, with evidence. The NDIA’s own guidelines say that supports should not be automatically reduced because of

underutilisation. They were. When pressed in a recorded complaint call about how the funding figures had

been calculated, the responsible officer — who, six days after the call, signed the official ’explanation of

decision’ letter as Delegate of the CEO — was unable to explain the figures and confirmed she would have to

escalate the question.

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2.2 What the cut transferred onto the family

The funded hours that disappeared did not correspond to a reduction in need. They corresponded to a

reduction in funded support for the same need. The work continued. Somebody had to do it. That somebody

is me.

Things that are not parental responsibility in any ordinary sense — and which are not adequately funded

under my son’s current plan — include:

• Managing chronic faecal and urinary incontinence in a 10-year-old, including a minimum of three to four loads of laundry every day, which are incontinence-related;

• Designing and delivering my son’s at-home therapy program, daily, because his DCD (developmental coordination disorder) only progresses with consistent, repeated, structured practice — practice that

is clinically evidenced as the mechanism by which he gains capacity, and which the plan does not

adequately fund through OT, physiotherapy, or allied health assistant hours. I am, in effect, doing

two clinical jobs the Scheme has declined to fund: researching and developing the program (work

that ordinarily sits with an allied health professional), and administering it daily (work that ordinarily

sits with an allied health assistant). I am not an allied health professional. I am a qualified senior

teacher with an inclusive education specialisation, which means I have the research literacy and the

pedagogical training to construct something workable out of clinical recommendations — but I am,

in honest terms, winging it. If I do not do it, my son does not progress. If a parent without my

professional background were in this position, their child would simply lose ground;

• Travelling 254 km return from Toowoomba to Brisbane for specialist pelvic floor physiotherapy and biofeedback training (five consecutive days each school holidays, self-funded, including

accommodation in Brisbane);

• Managing daily continence aids that, because of body composition associated with his chromosomal deletion, do not fit standard products and have to be trialled with continence nurses;

• Implementing the therapy-aligned routines that would ordinarily be embedded by a funded support worker, where the support worker hours granted in the plan are inadequate to do so;

• Coordinating five or more allied health professionals across two cities, in a regional area with workforce shortages.

None of this is parenting. All of it is disability-specific care. All of it is unpaid. All of it competes directly with

paid work.

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2.3 What we self-fund — and why

Beyond the unfunded labour, our family self-funds, out of post-tax household income:

• Specialist pelvic floor physiotherapy in Brisbane, including 1,270 km of fuel per intensive week and accommodation;

• Additional therapy hours beyond those funded in the plan, where the funded hours are clinically inadequate to deliver the therapeutic outcome the treating clinician has identified;

• Support worker hours beyond the five hours per week that were funded, because five hours per week is not a clinically viable level of support for a child with my son’s profile and the gap has to be

filled somehow;

• Low-cost assistive technology in its entirety, because the plan made no allocation for it. The reason it made no allocation is structurally telling: at a plan reassessment, the family is asked to forecast the

low-cost AT the child will need over the coming 12 months. We do not know, in April, what sensory

tool, what visual schedule system, what fine-motor aid, what continence support product, or what

regulation device will become necessary in August — because the need emerges as the child grows,

as new clinical recommendations are made, and as new functional problems present themselves.

The Scheme treats unforeseeable need as unfunded need. So, we fund all of it ourselves;

• Equipment and continence aids that are not adequately funded under the plan;
• Travel and accommodation for any specialist appointment outside Toowoomba. These are not extravagances. They are the difference between functional capacity and regression for a child

the Scheme was created to support. We are in a financial position to absorb these costs because our family

business has done well enough that we can. I will return to this in Section 5, because it is the single most

important equity point in this submission.

2.4 The cost to my workforce participation

I cannot work. I am not ‘choosing’ not to work. I am a fully qualified, senior, experienced specialist teacher

and I cannot reliably commit to a single casual school day — which runs from approximately 8:30am to

3:00pm — because the disability-related care load that the Scheme has declined to fund falls on me, every

day, in time blocks that intersect every part of the working day.

This is not ‘parental preference for supports to be provided otherwise than by parental care’ (the language

the Bill proposes to write into section 34). It is the entirely predictable consequence of a federal-funded

scheme failing to do what it exists to do, with the labour gap absorbed by the parent the state already knows

is there.

I am, on the Commonwealth’s own logic, an unproductive worker — not because I lack skills or capacity, but

because the Commonwealth has decided to fund my son’s needs at a level that requires my unpaid full-time

labour to make up the shortfall. I am a fully qualified senior teacher with a specialisation in inclusive

education, in a country that is, on its own Education Ministers’ published acknowledgement, in the middle

of a national teacher shortage — a shortage particularly acute in regional and remote areas and in the very

specialisation  I hold. The Commonwealth  is, through one of its own Schemes, removing me from the

workforce of another. The Productivity Commission would, I think, find this an interesting equilibrium.

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3. The Bill, provision by provision, against lived experience This section addresses the specific provisions of the National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026. I have read the Bill in full. I address it in the order

in which Schedule 1 presents its substantive amendments.

3.1 Part 1 — Defining functional capacity (new section 9B)

The Bill inserts a new statutory definition of functional capacity as the person’s ability to undertake an

activity without assistance from other people, assistive technology or modifications, in a context that

excludes ‘as far as possible’ the impact of the person’s environmental and personal circumstances.

On its face, this looks like an attempt to standardise assessment. In practice, it imports into primary

legislation a deeply problematic premise: that a participant’s ‘real’ functional capacity is what they can

do stripped of context. Disability does not happen in a vacuum. My son’s capacity to dress himself

depends entirely on whether he is medicated, regulated, supported, and not in pain from constipation;

whether the bathroom is set up correctly; and whether someone is there to redirect when his

executive function fails. To assess him without assistance, technology, or modifications, in a ’context

that excludes’ his environmental and personal circumstances, is to assess a child who does not exist.

It also creates a built-in evidentiary trap. The same context that the assessment excludes is what the

participant has spent years building so that they can function. The better the scaffolding, the lower

the assessed need — and the lower the funded support, the faster the scaffolding collapses.

Recommendation: Section 9B should be amended to require that functional capacity be assessed in

the context of the participant’s actual environment, with explicit recognition that scaffolding which

permits functioning is evidence of need, not evidence of independence.

3.2 Part 2 — Limiting unscheduled plan reassessments (new section 48A)

The  Bill restricts a participant's  ability to request an unscheduled reassessment by requiring

‘significant’ and ‘ongoing’ change to either functional capacity or to specified personal/environmental

circumstances (living, education, work, or informal support network). It extends the CEO’s decision

period from 21 to 90 days.

In my son’s case, the events that have justified — many times over — a reassessment in the current

plan period have been: documented suicidal ideation in the carer (me) on 18 June 2025, clinically

recorded by Dr on 20 June 2025; harm documented by treating clinicians within days; a

complete breakdown of capacity within the family to deliver clinical recommendations that were not

funded; and an escalation of incontinence-related medical demand that required private pelvic floor

physiotherapy not covered by the plan.

Under the proposed section 48A, it is genuinely unclear whether any of that would meet the threshold.

There has been no ‘alteration’ in my son’s functional capacity in the sense the Bill defines it — he is

who he is. There has been an alteration in informal supports — they have collapsed — but the test in

subsection 48A(3) requires the alteration to be ‘unanticipated’, and the NDIA will reasonably argue

that the collapse of informal supports under an underfunded plan was anticipated by the plan itself.

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Extending the decision period to 90 days, in the context of a Scheme where harm of the kind I have

described can occur in days, is dangerous.

Recommendation: Section 48A should be removed, or at minimum amended to expressly include

carer health, documented clinician concern, and inability to obtain reasonable and necessary supports

as grounds for reassessment. The 90-day decision window should be reduced.

3.3 Part 4 — Support determinations (new section 34A): the Minister’s percentage cut

Of all the provisions in this Bill, this is the one I most urgently ask the Committee to consider stopping

in its current form.

New section 34A authorises the Minister, by legislative instrument, to determine a percentage by

which the funding component amount for a specified group of supports is to be reduced across the

plans to which the determination applies. The Minister ‘must have regard to the safety of participants’

(subsection (3)). And then — extraordinarily — subsection (5) states:

To avoid doubt, the determination has effect even if the result is either or both of the following: (a) the funding provided under a participant’s plan for a reasonable and necessary support is less than the total cost of the support; (b) the funding provided under a participant’s plan for all reasonable and necessary supports funded under the plan taken as a whole is less than the total costs of the supports.

That is the Commonwealth writing into primary legislation that it can, by ministerial instrument, fund

supports it has already determined to be reasonable and necessary at less than what they cost. This

is not sustainability. This is a statutory framework for paying participants short of what the Agency has

already decided their disability requires.

The note to subsection (5) cheerfully observes that the reduced amounts are ’the amounts that have

effect for the purposes of references in this Act to a total funding amount or a funding component

amount’. In other words, once the Minister cuts, the cut amount becomes the amount the Act

recognises, and the participant has nothing to appeal: the original determination that the support is

reasonable and necessary is preserved, and the gap between that determination and the funding is,

by statute, simply allowed to exist.

This is what happened to my son administratively — therapy hours determined reasonable and

necessary, then funded at a level that did not cover the actual provider rates required to deliver them,

with the gap absorbed by our family. Section 34A makes that lawful, automatic, and unappealable

across whole groups of supports.

It also exposes participants directly to political risk. Where the Scheme is over budget — for reasons

unrelated to participants’ individual needs — the Minister can simply reduce the funding component

for, say, ‘support worker’ across thousands of plans by 10 per cent, with no individual review, no plan

reissue, no reviewable decision. Subsection (4) makes explicit that the determination does not alter

the text of the plans. The participant gets the same plan document but less money.

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Recommendation: Part 4 of Schedule 1 should be removed from the Bill in its entirety. If a percentage

cut mechanism is retained at all, it should be triggerable only on a participant-by-participant basis

through the existing review and variation mechanisms, with full reviewability under section 100. The

avoidance-of-doubt provision in subsection 34A(5) — that the funding may be less than the cost of a

reasonable and necessary support — should be removed regardless.

3.4 Part 5 — Plan renewal (new section 50A): the automatic 12-month rollover

The Bill provides that an old framework plan is, by force of section 50A, renewed as a new plan

immediately after its end date, with the same text as the old plan (subject to limited ministerial

alterations), and that ’the making of the new plan does not involve the making of any reviewable

decision’ (subsection 50A(4)(b)).

Combined with section 34A, this means: a Minister can reduce funding components in plans by

percentage; those plans then automatically renew for 12 months at the reduced level; and the act of

renewing them is, by statute, not reviewable. A participant whose funding has been administratively

cut is rolled into a fresh 12-month period of the same cut, without any individual decision being made

about them that they can challenge.

In my son’s case, the plan that was the subject of my complaint — finalised 23 April 2025 — was

permitted to automatically roll over on 22 April 2026, while my complaint remained unresolved and

while I was still attempting to obtain an explanation for the figures in the original plan. Under new

section 50A, this becomes the formal model, not an administrative quirk.

The Bill does preserve the ability to seek review of the original (pre-renewal) plan and to have any

successful review flow through to the renewed plan (section 103A and subsection 50A(5)). That is

welcome but inadequate. It assumes a participant has the literacy, resources, and time to mount a

review of the original plan, which most do not. It does not address the situation of a participant whose

circumstances have changed after the renewal — for them, section 48A’s threshold becomes the only

way back to the table, and section 48A has been narrowed (see 3.2 above).

Recommendation: Section 50A should be amended so that automatic renewal is at the participant’s

election, and so that an unreviewed renewal does not bar a fresh planning conversation. Alternatively,

the renewal should itself be a reviewable decision under section 99.

3.5 Part 6 — Reasonable and necessary supports: the parental responsibility provisions (new subsections 34(1G), (1H), (1J))

This Part of the Bill is the one I have the most direct, lived, evidentiary basis to address. New subsection

34(1G) provides that, for participants who are children, the CEO ’must take into account the

presumption that parents are responsible for providing substantial care and support for their

children’.

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New subsection 34(1H) defines ‘substantial care and support’ to include:

(a) supervision, personal care, transport, emotional support and behavioural support; and (b) other assistance with the activities of daily living that, regardless of the child’s disability, would reasonably be expected of a parent of a child of a similar age.

New subsection 34(1J) then provides that the CEO must not be satisfied that a support is reasonable

and necessary for a child if the primary or substantial purpose of the support is to:

(a) reduce burdens on parental time below what is reasonably expected of a parent; (b) improve household efficiency; (c) give effect to a parent’s preference for supports to be provided otherwise than by parental care.

I want to spend some time on this because the language of subsection 34(1J), in particular, will be

used against every parent who asks for a support worker.

Let me be specific. My son requires a support worker, in part, to deliver therapy-aligned activities and

transport, and in part to provide direct disability support so that I can attend to medical appointments,

the other three children, and — when possible — paid work. Under proposed subsection 34(1J), any

of those purposes can be characterised by a planner as ‘reducing burdens on parental time’ or

‘improving household efficiency’ or ‘giving effect to a parent’s preference’ for non-parental care. None

of those characterisations is wrong as a literal matter. All of them are also wrong as a matter of what

is actually going on.

What is actually going on is this. My son has a permanent chromosomal deletion. The care load his

condition generates exceeds, on his GP’s clinical record, what would reasonably be considered typical

parental responsibility for a child of his age. The presence of three younger children in the household

further constrains the informal support system’s capacity to absorb that load. The result is that

without funded support, I deliver the disability-specific care personally, and the cost is paid in my own

clinical decompensation (documented), in the loss of my workforce participation (total), and in the

day-to-day functioning of the rest of the household.

Subsection 34(1H)’s list of ‘substantial care and support’ — supervision, personal care, transport,

emotional support, and behavioural support — covers the entire content of what a support worker

for a child with disability actually does. By placing all of these inside the parental responsibility

presumption, the Bill effectively writes into primary legislation that anything a support worker would

do for a child is, by default, something a parent should be doing instead. The remainder of subsection

34(1H)(b) — assistance with daily activities ‘regardless of the child’s disability’ — is unobjectionable;

the problem is paragraph (a).

Combined with subsection 34(1J), this creates a presumption against funded supports for children that

no individual clinical evidence will rebut, because the framework operates at the level of purpose, not

need. The purpose can always be re-described as ‘reducing parental burden’. There is no participant

whose support would not, on that re-description, fail the test.

This is not theoretical. In my own complaint file, an NDIA officer told me — in a recorded call — that

my three other children are ‘not relevant’. That is in direct breach of NDIS guidance on informal

supports and family context, and it tells you exactly how ‘parental responsibility’ language is used in

practice: to remove from the assessment the very factors that make funded supports necessary.

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Recommendation: Subsection 34(1J) should be removed in its entirety. If it is retained, it must be

amended to provide that a support is not to be refused as funded merely because it has the incidental

effect of reducing parental burden, improving household efficiency, or aligning with a parent’s

preference, where the support is otherwise reasonable and necessary to meet the child’s disability

related needs. Subsection 34(1H)(a) should be confined to ordinary supervision, personal care and

transport — not all of supervision, personal care, transport, emotional support and behavioural

support — because the listed items, collectively, describe everything a support worker does, with the

result that funded support workers become statutorily disfavoured for any child.

3.6 Part 6 — Effectiveness evidence hierarchy (new subsections 34(1E) and (1F))

The Bill introduces a statutory hierarchy under which, in deciding whether a support will be effective

and beneficial, the CEO must consider — in order of importance — (a) published, peer-reviewed,

generalisable research; (b) evidence as to effectiveness for the participant’s circumstances; (c)

evidence as to outcomes for the participant from their previous plan; and (d) any other matters.

New subsection 34(1F) then provides that the CEO “may decide that the CEO is not satisfied” that a

support is effective and beneficial if there is limited or no peer-reviewed research, even if there is

direct evidence of outcomes for the participant.

My son is, on the available registry data, the only person in the world currently registered with his

specific chromosome 6q15–q16.3 microdeletion. There are other children documented with deletions

on the same chromosome, but their presentations are so substantially different — driven by which

specific genes within the chromosome are affected, which other systems are involved, and which co

occurring conditions are present — that they cannot meaningfully be grouped with him for the

purposes of clinical generalisation. The European researcher who was, until recently, the leading

academic studying deletions on this chromosome has now retired. There is, at present, no active

research programme anywhere in the world generating peer-reviewed, generalisable evidence about

the lifecycle outcomes of children with my son’s condition. The literature that does exist is, by the

standards subsection 34(1F) imposes, limited and non-generalisable.

There is, however, substantial direct clinical evidence about how my son specifically responds to

specific therapy modalities. That evidence has been built up over years by his treating allied health

team, and it shows clear and documented functional gains across multiple domains. Critically, his

current presentation actually diverges from the limited evidence base that does exist — he is doing

better than the literature would predict — because of early, intensive, capacity-building therapeutic

intervention from the time of diagnosis. That intervention was funded almost entirely by our family.

It is exactly the kind of outcome Heckman’s research on early high-quality investment predicts, and I

will return to that point in Section 4. The short version is this: my son is evidence of what early

intervention does, and his outcomes are better than the generalisable literature describes — which

under subsection 34(1F) becomes a reason to discount, not credit, the evidence of what is actually

working.

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Subsection 34(1F) is, in his case and in every rare-condition case, an instruction to the CEO to prefer

absent evidence over present evidence. It explicitly permits the CEO to discount direct, documented

clinical evidence of what is working for an individual participant on the basis that the broader research

literature does not exist. For participants with rare conditions — the very participants for whom the

Scheme is most clearly needed and for whom “comparable supports” on the open market do not exist

— this provision will be operationally devastating.

There is a further problem the Committee should be aware of, and which compounds everything

above. As at the date of this submission, the NDIA’s own records of my son’s diagnosis are incorrect.

His file records a deletion on the wrong chromosome. The correct diagnosis — chromosome 6q15–

q16.3 — was confirmed this year and the NDIA has been formally notified. The Agency is therefore

being asked, under the new evidentiary hierarchy, to apply peer-reviewed generalisable research to a

condition it does not have correctly recorded on file. If the Agency cannot reliably maintain accurate

records of what disability a participant has, the question of whether peer-reviewed research on that

disability exists is, with respect, the second problem the Committee should be worrying about. The

first is whether the Agency is searching the literature for the right condition at all.

This is not a hypothetical. It is the lived reality of one of the participants this Bill will affect. The

Committee should consider what it means that a provision designed to elevate “evidence-based

decision-making“ is being introduced into a Scheme whose record-keeping is currently incapable of

supporting evidence-based decision-making at the most basic level — knowing which condition the

participant actually has.

Recommendation: Subsection 34(1F) should be removed. The hierarchy in subsection 34(1E) should

be retained as a guide, but not as a permission to override direct clinical evidence for an individual

participant. The Committee should additionally require the NDIA to demonstrate, before any

evidentiary hierarchy is brought into force, that its own diagnostic record-keeping for participants with

rare and complex conditions is accurate, auditable, and capable of supporting the literature searches

the new hierarchy assumes.

3.7 Part 8 — Tightening ‘permanence’ (new section 25A)

This is the part of the Bill that has attracted the most public attention, and rightly so. New section 25A

provides that an impairment is not permanent unless the person has undertaken all ’appropriate

treatment’ — defined as treatment that is evidence-based, can reliably be expected to materially

improve the impairment, and is regularly undertaken or performed in Australia.

Critically, subsection 25A(2) provides:

Treatment may be appropriate treatment for a person’s impairment or impairments regardless of whether the person’s individual circumstances restrict the person from accessing the treatment. Note: A person’s individual circumstances include the person’s financial circumstances and geographical location.

Page 14 of 44

This is a remarkable statement for the Commonwealth Parliament to make. It says, in terms, that a

treatment can be required by the Scheme regardless of whether the participant can actually afford it

or get to it. A person living in a remote community where no specialist clinician practises can be told,

lawfully, that they have not undertaken all appropriate treatment, because the treatment exists

somewhere in Australia.

I have taught in Cunnamulla, Mount Isa, and Thursday Island. In each of those communities, there are

children whose ‘appropriate treatment’ under this definition would be available only in a capital city

the family has no means of reaching. There are First Nations children for whom the geographical and

financial barriers to specialist treatment are not incidental to their disability but constitutive of it.

Section 25A says, expressly, that those barriers do not matter for the question of whether the child

meets the disability requirements.

In my son’s case, the section is operationally meaningless — his condition is a chromosomal deletion.

There is no treatment. But the principle the Parliament is being asked to write into primary legislation

— that financial and geographic exclusion are immaterial to whether a person counts as having a

permanent disability — is one the Committee should refuse.

Recommendation: Subsection 25A(2) should be removed. ‘Appropriate treatment’ should be defined

to mean treatment that is evidence-based and reasonably accessible to the participant in their actual

location and financial circumstances.

3.8 Part 6 — Value-for-money equipment leasing presumption (new subsections 34(1B) and (1C))

The Bill provides that, for equipment and modifications, the CEO must consider comparative costs of

purchasing or leasing, and that where the participant’s circumstances are likely to change in the short

term, the CEO must presume — unless persuaded otherwise — that leasing represents better value

for money than purchasing.

For a child with a permanent chromosomal deletion who is growing, almost every piece of equipment

falls into the ‘circumstances likely to change in the short term’ category, because the child is growing.

The proposed presumption will create a strong default toward leasing for paediatric assistive

technology — a default that ignores the reality that leased equipment is rarely fitted, configured, or

maintained in the same way as purchased equipment, and that for a child whose body composition

does not fit standard products (as my son’s does not), lease arrangements are often not viable at all.

Recommendation: Subsection 34(1C) should be amended to exclude paediatric equipment used to

address permanent disability where the child’s circumstances are changing because the child is

growing.

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3.9 Part 7 — Plan suspension for non-contactability (new section 40A)

The Bill enables the CEO to suspend a participant’s plan, and ultimately revoke participant status,

where the CEO is satisfied the participant “is not contactable” for the purposes of a request under

section 36 or 50.

In my own experience of the NDIA’s contact practices, “reasonable attempts to contact” is doing

significant work in that provision. I have had Agency staff call from withheld numbers, leave messages

requesting call-backs to general lines, schedule meetings on dates I had not agreed to, and treat non

attendance at an unscheduled welfare check as evidence of disengagement when the meeting itself

had been framed pretextually. The proposed section 40A would have made each of those interactions

a step toward suspension.

I want to put a specific dimension of this on the record, because it is directly relevant to how section

40A will operate in practice. I am myself a person with disability. I am a Level 2 autistic woman,

formally diagnosed, with a documented profile that includes significant dysregulation in response to

unscheduled and unstructured communication. I have informed the NDIA of this in writing, on multiple

occasions. There is a flag on my son’s file — visible to any Agency staff member who opens it —

instructing that I am not to be cold-called, and that any contact must be scheduled in advance with

adequate prior notice. That flag is, on the available evidence, not consistently read or actioned. I

continue to receive unannounced phone calls. I have received an unannounced call on a Saturday, in

a household with four children present, in which the staff member appeared to expect that I would

be available to engage substantively on the spot. I was not, and could not be. The call was, by

definition, exactly the kind of unscheduled and unstructured communication my disability profile

makes it impossible for me to engage with safely.

This is not a personal grievance. It is a structural failure in how the NDIA accommodates participants

and nominees with cognitive, psychosocial, and neurodivergent disability. Reasonable adjustments

under the Disability Discrimination Act 1992 (Cth) are not optional; they apply to a Commonwealth

agency dealing with people with disability and the carers of people with disability in exactly the way

the NDIA does. A flag on a file that staff do not read is not a reasonable adjustment. A flag on a file

that staff actively override is something the Disability Discrimination Commissioner would, in my

respectful submission, be interested in.

There is a further incident on the record that the Committee should be aware of, because it illustrates

how the contactability problem operates in practice when the Agency has a specific reason to want

the contact to fail. In the course of a formal complaint I lodged — a complaint which included

allegations of conduct engaging Australia’s human rights obligations — I had given the NDIA written

advance notice of dates on which I would be unavailable. The dates corresponded to one of the

Brisbane physiotherapy intensives for my son’s incontinence, the dates I have set out earlier in this

submission. The Agency had the dates in writing. The Agency knew I was away. The Agency knew why.

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The Agency then sent the email requiring a response on the first day of the period I had advised I was

unavailable. The email gave me five days to respond, and stated that the complaint would be closed

if no response was received within that window. I responded by email four and a half days later —

within the window stated. The complaint was nonetheless closed before my response arrived. On the

available timeline, the complaint was closed at the start of the fourth day, not the end of the fifth.

The pattern is documentable: an Agency that had written notice of my unavailability opened a five

day response window on day one of that unavailability, on a complaint that contained human rights

allegations, and closed the complaint on day four — twenty-four hours before the deadline it had itself

imposed. The Committee can draw its own conclusions about the probability of that sequence

occurring by accident.

I raise this not to relitigate that complaint, which is the subject of separate escalation to the

Commonwealth Ombudsman and the Australian Human Rights Commission. I raise it because section

40A of this Bill, in granting suspension powers for “non-contactability,” is being introduced into an

administrative culture that already uses contactability mechanisms strategically against participants

who are pursuing complaints the Agency would prefer to close. The Committee should not legislate a

suspension power into that culture. It should legislate against it.

Compounding both of the foregoing problems is a parallel one: the NDIA’s strong and consistent

preference for verbal rather than written communication. Substantive content of meetings, planning

conversations, and complaint discussions is routinely communicated by phone rather than in writing.

Written requests for the same content to be confirmed in writing are, in my experience, declined,

deflected, or partially answered. The pattern is consistent enough to be a practice. The explanation

that fits the available facts is that verbal communication does not create the documentary record that

written communication does, and that the absence of that record is administratively convenient to

the Agency in subsequent dispute resolution.

The combination of these three problems — unscheduled and unstructured phone contact, strategic

timing of communications around known periods of participant unavailability, and a refusal to confirm

substantive content in writing — is, for a participant or nominee with my disability profile, a

structurally impossible communication environment. It is also a setting that the proposed section 40A

turns directly against the participant. Under section 40A, the participant who cannot accept

unscheduled phone calls because of their own disability, who has had complaints closed against them

during documented periods of unavailability, and who cannot get the Agency to communicate in the

written form their disability requires, becomes a participant who is “not contactable” — and is

therefore at risk of plan suspension.

Participants with disability — particularly those whose disability is cognitive, psychosocial, or

neurodivergent, and including those who, like me as a nominee, fall within those categories

themselves — will be disproportionately affected by a non-contactability suspension power. The Bill’s

drafting does nothing to recognise this. The administrative reality, as I have experienced it for nearly

a year now, makes the risk concrete.

Page 17 of 44

Recommendation: Section 40A should be amended to require:

• That “reasonable attempts” expressly include written notice to all contact methods on the participant’s record;

• That any suspension be preceded by a written warning identifying the specific contact attempts relied on, the consequences of continued non-response, and the participant’s right

to request reasonable adjustments;

• That response windows be calculated only from the date the participant is documented as available to engage, where the Agency has been given prior written notice of unavailability;

• That reasonable adjustments under the Disability Discrimination Act 1992 (Cth) — including but not limited to written-only communication, scheduled contact only, and the use of a

support person — be provided as of right to any participant or nominee whose disability

affects communication, with those adjustments enforceable against the Agency’s own contact

practices;

• That, separately, the NDIA be directed to confirm in writing, on participant or nominee request, any substantive content of a planning conversation, plan reassessment, complaint

discussion, or compliance interaction within a defined statutory timeframe. The Scheme’s

documentary record should not be at the Agency’s discretion to maintain.

3.10 Schedule 3, Part 2 — Automated decision-making

The Bill provides for the use of computer programs to make administrative decisions under the Act.

The Robodebt Royal Commission delivered its final report in July 2023. Its findings, in plain language,

were that an automated Commonwealth scheme of administrative action against vulnerable

Australians produced unlawful debts, caused widespread harm, and required years of inquiry to

unwind. Commissioner Holmes did not characterise the failure as a technological one. She

characterised it as an institutional one — a failure by senior officials and ministers to ask whether what

they were doing was lawful or right.

Less than three years later, the Commonwealth is asking this Committee to authorise the extension of

automated decision-making into the NDIS — a Scheme whose participants are, by definition, the

population the Royal Commission identified as most vulnerable to automated administrative harm.

This Committee should not endorse that without the strictest safeguards. The fact that it is being asked

to do so this soon after Robodebt is, in itself, a matter the Committee’s report should record.

In my own case, the most damaging features of the planning process have been the use of templated

and  apparently  auto-generated  decisions whose  figures  the  responsible  officer  could  not

subsequently explain. Automation will entrench that problem. A participant who cannot get a human

to explain a figure now will not get a computer to explain it later.

Recommendation: Schedule 3, Part 2 should be amended to require: (a) human review of any

automated decision adverse to a participant; (b) a statutory right to obtain the inputs and logic on

which an automated decision was made; (c) an express prohibition on automated decisions in relation

to reasonable and necessary supports, plan reassessment, and participant status.

Page 18 of 44

4. The economic case against this Bill This Bill is being framed as a sustainability measure. I want to address that framing directly, because

it relies on a particular accounting that ignores the largest cost the Commonwealth is in fact bearing

— and increasing — by underfunding disability supports for children.

Professor James Heckman, Nobel laureate in economics, and his colleagues at the University of

Chicago have established, over decades of work, that high-quality early childhood programmes for

disadvantaged children deliver a return on investment of between 7 and 13 per cent per child per

year, through better outcomes in education, health, social participation, and adult employment. The

13 per cent figure relates to comprehensive birth-to-five programmes for disadvantaged children and

is derived from long-term randomised control follow-up of the Carolina Abecedarian and CARE

projects. Heckman’s broader work consistently shows that the rate of return is highest when

investment is earliest — that ‘skill begets skill’, and that adolescent remediation of the effects of early

under-investment is very costly and largely ineffective.

Children with permanent disability are not a marginal case for this analysis. They are its strongest case.

The labour-market and social-participation gap between an adequately supported child with

permanent disability and an under-supported one is enormous, and it persists across the entire

lifecycle. Every dollar this Scheme does not spend on a 10-year-old with a chromosomal deletion who

can be supported into functional adulthood is several dollars the Commonwealth will later spend on

lifetime income support, on tertiary or residential disability accommodation, on health system contact

for preventable secondary conditions, and on the lost tax revenue from a working-age adult who could

have been a worker.

It is also several dollars the Commonwealth is currently spending on the carer — the mother — who

cannot work because she is doing the unpaid disability support work that the Scheme has declined to

fund. In my own case, the Commonwealth is forgoing the tax I would otherwise pay as a qualified

senior teacher in a regional area with a documented teaching shortage. I am not unique. I am the

median case for a mother of a child with significant disability in regional Australia.

This Bill widens that loss. By embedding the parental responsibility presumption into primary

legislation (subsections 34(1G), (1H) and (1J)); by authorising percentage reductions in funding

components without individual review (section 34A); by automatically renewing under-resourced

plans (section 50A); and by tightening permanence so that financial and geographical exclusion are

immaterial (section 25A) — it institutionalises under-investment in precisely the cohort where

Heckman’s research says under-investment is most expensive.

The Committee should ask the Department for the model that converts the projected savings under

this Bill into a long-run figure that includes (a) carer workforce participation loss, (b) lifetime income

support for under-supported participants,  (c)  lifetime health system contact for preventable

secondary conditions, and (d) tertiary disability accommodation costs. If the Department cannot

produce that model, the savings claim is incomplete and the Committee should say so.

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5. The equity case: what happens when only privilege can compensate I want to be uncomfortably direct about my own position. My son is currently receiving more care

than the NDIS funds for him, because my husband owns a business that allows us to absorb costs that

other families cannot. I am white. I am educated. I am professionally trained to read clinical reports

and policy documents. I can write a submission like this one. My son is, in plain terms, lucky.

None of that is what the NDIS was created to test. The NDIS was created to provide a national,

equitable scheme of disability support so that outcomes for a child with disability do not depend on

the family the child happens to be born into. Every provision of this Bill makes those outcomes more

dependent on the family — on the parents’ time, capacity, literacy, and discretionary income.

The parental responsibility provisions assume parents are available. Many parents are not — through

their own disability, through work, through single parenthood, through the structural constraints that

fall on First Nations families, refugee families, families in remote communities. The percentage-cut

provisions assume households can absorb the gap. Many cannot. The permanence-and-treatment

provisions assume people can travel to treatment, pay for it, and access it. Many cannot.

I have taught in communities where children with disability did not receive a fraction of what my son

receives, because their parents could not do what my husband and I have done. Those children are

still in those communities. They are now older. The lifelong cost of the under-investment in them is

being paid by them and by the public system that picks them up further down the track. This Bill

multiplies that pattern.

If the Committee passes this Bill in its current form, it will be deciding that the floor of disability

support in Australia is what an under-resourced, unsupported family can do unassisted, with whatever

they can scrape together privately on top. That is not a Scheme. That is a means test administered by

exhaustion.

6. Indirect disability discrimination against parents — and how this Bill compounds it

I want the Committee to engage seriously with the proposition that this Bill, in writing the parental

responsibility presumption into primary legislation, places the Commonwealth in tension with its own

human rights obligations under the Disability Discrimination Act 1992 (Cth). I make this point not as a

hypothetical legal argument but as a parent who is, in real time, being subjected to exactly the conduct

the Act was passed to prevent.

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6.1 The legal framework: disability discrimination by association

The Disability Discrimination Act 1992 (Cth) prohibits direct and indirect discrimination on the basis of

disability. Critically, section 7 of the Act extends those protections to associates of a person with

disability — including parents and carers. Section 8 makes clear that discrimination can occur because

of the fact that a person with disability has a carer or assistant. The Act exists to ensure that families

and carers of people with disability are not treated less favourably than the families and carers of

people without disability, including by being required to comply with a condition or requirement that

they cannot reasonably meet because of the disability.

Indirect discrimination, under section 6, occurs where a requirement or condition is imposed that has

the effect of disadvantaging people with disability (or, by extension, their associates) when compared

to people without that disability, where the requirement is not reasonable in the circumstances.

The Act gives effect to Australia’s obligations under the United Nations Convention on the Rights of

Persons with Disabilities, which Australia ratified in 2008. Article 5 of the Convention requires States

Parties to prohibit all discrimination on the basis of disability. Article 28 requires States Parties to

ensure access to social protection programmes and to ensure the right of persons with disability and

their families living in situations of poverty to assistance from the State with disability-related

expenses.

6.2 The Bill’s parental responsibility provisions are an indirect discrimination instrument

The proposed parental responsibility provisions — new subsections 34(1G), (1H) and (1J) — impose a

condition on the parents of children with disability. The condition is, in substance, this: parents of

children with NDIS-funded disability are required to deliver, themselves, the supervision, personal

care, transport, emotional support and behavioural support that the child requires, except where the

support sought is over and above what would be expected of a parent of a child of the same age

without disability.

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On its face this looks neutral. In practice it is not. The ’parent of a child of the same age without

disability’ is a comparator who:

• Does not have to do three to four loads of laundry every day to manage daily faecal and urinary incontinence in a 10-year-old;

• Does not have to drive 254 km return to Brisbane five days in a row, every school holidays, for specialist pelvic floor physiotherapy because no local provider exists;

• Does not have to attend three to five allied health appointments a week and coordinate the implementation of clinical recommendations between them;

• Does not have to trial continence aids with continence nurses and import them from other continents — because the products that fit my son’s body composition are not manufactured or distributed in Australia at all, and the standard Australian products do not fit him;

• Does not have to absorb the cognitive and emotional load of running a multi-clinician care coordination function on top of parenting four children;

• Does not have to manage overnight oxygen desaturation, hypothyroidism, growth hormone axis dysregulation, and recurrent faecal impaction in their child.

That parent — the comparator the Bill effectively assumes — can hold down full-time work. I cannot.

The reason I cannot is not because I have chosen ‘parental care’ as a preference over funded support.

It is because the disability-specific care load on my time is, every day, larger than the time available in

a working day. To require me to deliver that load and to also work, or to penalise my son’s plan

because I have not delivered it, is to impose a condition on me that no parent of a child without

disability is required to meet.

That, in plain terms, is indirect discrimination by association under section 7 of the Disability

Discrimination Act. The Bill does not just permit this conduct administratively — it instructs the CEO,

by statute, to engage in it. Subsection 34(1J) tells the CEO not to be satisfied that a support is

reasonable and necessary if its primary purpose is to ’reduce burdens on parental time below what is

reasonably expected of a parent’. ‘A parent’ in that sentence has no qualifier. It means a parent. Not

‘a parent of a child with disability’. The reference comparator is a parent of any child. The disability

specific load is, by statutory design, invisible to the assessment.

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6.3 The disability-specific economy of an ordinary day

To illustrate what is being required of me, in concrete terms, and why it cannot be reconciled with

paid work or with the cost of living that Australian families currently face — I want to walk the

Committee through the disability-specific household economy that the Scheme has decided I should

carry.

Laundry

Our household runs a minimum of four to five loads of washing every single day, of which at least

three are directly disability-related. The disability-related loads include full bedding — sheets,

mattress protector, water-absorber underpad, pillowcases, doona, doona cover, and on bad nights

the pillow itself — because my son’s incontinence saturates the bed overnight. This is on top of an

ordinary household washing load for a family of six.

The economic cost of this is measurable. Each load requires water, electricity, and detergent. The

Australian Bureau of Statistics’ Consumer Price Index for March 2026 records that electricity costs rose

25.4 per cent in the 12 months to March 2026, primarily because Commonwealth and State

Government electricity rebates have been used up. Excluding rebates, retail electricity prices rose 3.9

per cent in the same 12 months following annual price reviews by retailers in July 2025. The Australian

Energy Regulator’s 2025–26 Default Market Offer increased residential prices by between 0.5 and 9.7

per cent depending on usage and location.

My household is doing roughly four times the laundry load of a comparable family of six without a

child with incontinence. We are doing that load into a national electricity market in which rebates

have ended and retail prices have risen. We are doing it with water at metered cost. We are buying

detergent at supermarket prices that have been pushed by 3.1 per cent annual food and non-alcoholic

beverage inflation and 4.6 per cent headline CPI to March 2026. None of those costs are funded under

the NDIS. None of them are ‘parental responsibility’ in any sense that would be true for a family

without a child with disability.

Time

Three to four loads of disability-specific washing a day is not a discretionary chore. It is a non

negotiable load that has to be done because the bedding has to be dry by night-time and the school

uniform has to be ready by morning. It consumes the early morning, the late morning, and the early

afternoon in interleaving wash-and-dry cycles. It cannot be done in the evening because the bedding

is needed in the evening. It cannot be batched to weekends because there is no clean bedding to sleep

on between Monday and Friday otherwise.

We have one washing machine. A single hygiene wash, on the cycle setting required for faecal

contamination, takes a minimum of two hours. Three loads a day, on that cycle, is six hours of machine

time — and that does not account for drying. The household runs, in practical terms, on notifications:

my phone alerts me when the washing machine finishes so that I can immediately load the next cycle.

If I miss one cycle by an hour, we fall behind by the end of the day; if I miss two, I am at the laundromat

the next day catching up. There is no slack in this system. It is not a domestic preference. It is the

engineering of incontinence management in a household with one machine and one child whose body

produces the load.

Page 23 of 44

Bathroom and household contamination

Beyond the washing itself, the day involves repeated cleaning of bathrooms, doorways, floors, and

hard surfaces. My son’s developmental coordination disorder and executive function profile mean he

does not have the gross motor planning or sequencing ability to contain faecal incontinence to a single

location. The path between his bed, the toilet, and the shower is, on bad days, contaminated. The

toilet, shower, door handles, and floor coverings — including his bedroom carpet, which is

permanently stained despite protective covers — all require cleaning. He soils in the shower because

he cannot reliably reach the toilet in time, and the shower then has to be cleaned at a hygiene

standard before another family member can use it.

I will not document the specifics further in this submission, out of respect for my son’s dignity.

Photographic evidence of the contamination has been provided to my federal Member of Parliament.

The Committee is welcome to be assured that the photographic record exists; the choice not to

reproduce it here is mine.

Therapy delivery and home-program design

In addition to laundry, cleaning, toileting and personal care, I am running my son’s at-home therapy

program. As set out in Section 2.2, that involves designing the program (a clinical role) and

administering it daily (an allied health assistant role), neither of which is funded. The work includes

researching evidence-based approaches to my son’s specific functional impairments, producing visual

supports (toileting sequences, hand-washing sequences, mirrored eating prompts) appropriate to his

developmental level, laminating and installing them in the relevant rooms of the house, and revising

them as his needs change. None of this is parenting in any sense the Committee would recognise from

a household without a child with disability. All of it is therapy delivery in a household where the

therapy has been declined.

Administrative load

On top of all of the above sits the administrative function. My son’s plan is self-managed, which I chose

deliberately because providers make billing errors and a plan manager will pay them. Over the course

of his current plan I have identified and corrected hundreds of dollars of provider billing errors —

money that would otherwise have left my son’s plan to no benefit. The Australian taxpayer is, in real

terms, better off because I am administering the plan myself. The irony is sharp: my conscientious

stewardship of public money — declining to overspend, declining to pay incorrect invoices, declining

to commission supports we do not need — is then recorded by the NDIA as “underutilisation” and

used as the justification for cutting the plan. A participant family that respects the taxpayer is, in the

current administrative culture, punished for it.

The plan review process itself is a documentary exercise of significant scale. My most recent plan

review file is, conservatively, hundreds of pages: clinical reports from five or more allied health

professionals (all paid for privately because the previous plan was inadequate to fund the reports it

required), supporting letters, functional descriptions, equipment quotes, transport calculations, and

a spreadsheet  I maintain tracking expenditure against goals against clinician recommendations.  I

produce this material to the standard required by NDIS legislation and operational guidelines.

Page 24 of 44

The Agency, when challenged on its decisions about that material, has been unable on the available

evidence to explain how it weighed it.

The total

Add together the laundry (six hours of machine time and roughly three hours of my active labour); the

bathroom and household contamination cleaning (variable, but typically another hour to two on a

normal day); medication administration; toileting routines; the at-home therapy program (planning

and delivery, on average an hour to ninety minutes daily); coordination of allied health appointments;

the appointments themselves, which are not all in Toowoomba; school liaison; sibling pickup and

drop-off, constrained by the appointment schedule; managing the night-time disrupted-sleep

regulation of a child with documented overnight oxygen desaturation; and the administrative load of

running a self-managed plan, a plan review process, and a formal NDIS complaint and escalation

process that the Agency is not assisting with.

There are not, in any literal sense, the hours in the day for paid employment on top of this. I am, in

the Commonwealth’s own language, “unproductive” — and the Commonwealth is making me so by

funding my son’s plan at a level that requires my unpaid full-time labour to fill the gap.

Money — in a cost-of-living crisis

All of the above is taking place against the worst sustained cost-of-living pressure Australian

households have faced in a generation. To anchor the Committee in the data:

• Headline CPI rose 4.6 per cent in the 12 months to March 2026 (ABS), up from 3.7 per cent in February 2026. The trimmed mean (underlying inflation) was 3.3 per cent — still above the

Reserve Bank’s 2–3 per cent target band.

• The Reserve Bank cash rate, after a partial easing through 2025, was raised to 3.85 per cent in February 2026 and to 4.10 per cent in March 2026 in response to renewed inflationary

pressure. Banks passed those rate rises through to variable home loans in full.

• Housing costs rose 6.5 per cent in the 12 months to March 2026; transport costs rose 8.9 per cent; food and non-alcoholic beverages rose 3.1 per cent (ABS).

• Mortgage interest charges, after falling earlier, rose 1.5 per cent in the March 2026 quarter, with employee household living costs (the category most relevant to families like mine) rising

1.4 per cent in the quarter and 2.6 per cent in the year.

• Electricity costs in the CPI rose 25.4 per cent in the 12 months to March 2026 because the Commonwealth Energy Bill Relief Fund rebates have ended.

• Wage growth (Wage Price Index, December 2025) was 3.4 per cent annually — below the headline CPI.

In this environment, the question of whether both parents can work is not a lifestyle question. It is,

for most Australian families with mortgages, a survival question. Average Australian households are

diverting 30 per cent or more of their disposable income to mortgage servicing. Rental vacancies

remain extremely tight, with asking rents in capital cities up 5.3 per cent in the year to November

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Into this environment, the Bill writes a presumption that parents of children with disability will absorb,

unpaid, the supervision, personal care, transport, emotional support and behavioural support of those

children. It is asking parents who are already losing real income to inflation to also forgo employment income

to deliver disability care the Federal Government has declined to fund. For most Australian families, that is

mathematically impossible — and for single-parent families, it is not even on the table.

Single parents — the unspoken case

I am in a two-parent household. One parent works; one parent does the disability care, all the household

coordination, and the NDIS process. We absorb the gap because we have two working-age adults, one of

whom has a small business and the capacity to absorb costs. Even then, I have presented to my GP with

documented suicidal ideation. Even then.

A single parent of a child with a disability of the kind I have described has no such buffer. They have, by

definition, one adult’s time and one adult’s earning capacity to allocate between disability care and

household income. Under the parental responsibility provisions of this Bill, that single parent will be assessed

against a comparator parent — a parent of a child without disability — who has the same hours in the day,

but none of the disability-specific demands on them.

The Bill provides no recognition of family structure. It does not acknowledge that informal supports —

already named in subsection 34(1K) as something to be preferred — are simply not available in some family

configurations. It does not acknowledge that the parental responsibility presumption operates entirely

differently on a household with one income-earning adult than on a household with two. The result is that

single-parent households of children with disability — overwhelmingly headed by women — bear the entire

effect of the Bill’s drafting at compounded force.

There is a further consequence the Committee should sit with, because it is rarely named in disability policy

debate, and the Bill makes it materially worse. The financial and physical load that the Bill transfers onto the

parent who has primary care of a child with disability is so significant that, in the event of a separation, no

rational parent would want to take that primary care. The parent who takes the child takes the disability

load: the inability to work full-time, the unfunded therapy hours, the laundry, the contamination cleaning,

the at-home program design, the medical coordination, the NDIS process. They also take the financial liability

— because, as this submission has set out, the Scheme does not in fact fund what the child needs, and the

gap has to be filled out of pocket. Child support, calculated against an earning capacity the carer-parent does

not have, will not close that gap; it is not designed to. The parent who does not take the child keeps their

earning capacity, keeps their working week, and keeps the financial liability low. The Bill, by entrenching the

parental responsibility presumption and transferring more cost onto the carer-parent, sharpens that

asymmetry. It creates, in effect, a statutory disincentive to be the primary carer of a child with disability after

a relationship breakdown. The children most affected by this — the children whose primary carer is, after

separation, the parent with less resources, less time, and less capacity — are children with disability. That is

not a marginal consideration. It is a structural risk this Bill creates and the Committee should be asked to

consider.

This is, again, indirect discrimination. It is a condition that, by its operation, disadvantages a group defined

by their association with a person with disability. It is not a reasonable condition in circumstances where the

requirement to deliver disability-specific care is, by definition, more onerous than what is required of a parent

of a child without disability.

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6.4 Carers are statistically a discriminated-against population already

The Committee should not consider the discrimination point only in the abstract. The available data

already shows that carers in Australia are, as a group, systematically excluded from the labour market

and from financial security:

• 70 per cent of primary carers in Australia are women (ABS Survey of Disability, Ageing and Carers, 2018);

• Half of all carers live in households in the lowest two equivalised gross income quintiles — twice the rate of non-carers (ABS);

• Working-age primary carers are significantly less likely to be in the labour force than non- carers — with 43.7 per cent not working and not looking for work, compared to 19.7 per cent of non-carers;

• 35 per cent of carers have a work-limiting disability themselves, compared to 15 per cent of people without caring roles;

• Almost half of carers responding to recent national surveys report high or very high psychological distress; one in three report being highly socially isolated;

• Modelling cited by the Australian Disability Network indicates that being an NDIS client reduces a person’s chance of being in employment and reduces their chance of transitioning into work by around seven percentage points.

The Bill’s parental responsibility provisions will worsen every one of those figures. The Department’s

own modelling for this Bill should be required to address them. If it does not, the Committee should

record that fact in its report.

6.5 What is actually being asked of parents — and why it is unreasonable

The Bill assumes parents have:

• The time to deliver disability-specific care — which, as set out above, exceeds the time available in a working day;

• The clinical knowledge to deliver therapy-aligned activities — which parents do not have, which is the point of the allied health professions, and which the Bill simultaneously makes harder to access by tightening ‘value for money’ considerations and elevating peer-reviewed generalisable research over individualised clinical evidence;

• The financial buffer to absorb costs the Scheme does not fund — at a moment in Australian economic history when most households do not have that buffer;

• The household structure (two parents, available informal supports) to make the load shareable — when many families do not have that structure;

• The psychological reserve to continue delivering this load over years — when the evidence is that carers in this situation become psychologically unwell, with documented suicide risk in some cases (including mine).

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None of those assumptions is empirically supported. All of them are statutory wishful thinking. The

question for the Committee is whether the Commonwealth Parliament is prepared to legislate on the

basis of statutory wishful thinking in a domain where the cost of being wrong is paid in carer mental

health, child developmental regression, and the long-run cost to the public purse of both.

6.6 A note on my own evidence

I am providing this section under my own name, in my capacity as both a parent and a former teacher.

I want to be unambiguous about one thing in particular for the Committee’s record.

On Wednesday 18 June 2025, I came home from a meeting with my son’s treating occupational

therapist about a 53 per cent reduction to his funded supports, and I was suicidal by the time I walked

through the door. My husband intervened. I did not take my life that night. The clinical cause was not

my son’s disability. The clinical cause was the impossibility of delivering his disability-related care to

the standard his condition requires while operating with a 53 per cent reduction in his funded

supports, and the breakdown of my own coping capacity at that point.

I am here. I am writing this submission. I am, on present evidence, one of the parents the Committee

will hear from. The Committee should sit with the question of how many other parents are not. The

Bill should not be passed in its current form on the assumption that we are.

7. Process concerns: the complaints system this Bill leaves in place Several provisions of this Bill — particularly the automatic renewal in section 50A and the narrowing

of unscheduled reassessment in section 48A — assume a functioning complaints and review system

as the safeguard against bad planning decisions. I want to put on record, for the Committee, that that

system does not currently function for participants in any meaningful sense.

In my own case, since lodging a formal complaint on 2 July 2025, I have:

• Had a complaint closed without investigation by the NDIS Quality and Safeguards Commission;

• Had a second complaint closed over the Christmas period against my explicit written objection;

• Been told that ‘feedback’ had been provided to the line manager of the officer complained about, with no investigation, findings, or outcomes communicated to me;

• Had the same officer who was the subject of one of my complaints subsequently sign the ‘explanation of decision’ letter as Delegate of the CEO — a conflict of interest that the Agency has not addressed;

• Received a final complaint resolution letter from the NDIA that did not address the substance of the complaint, told me privacy prevented any further information, and pointed me to the Commonwealth Ombudsman and FOI;

• Had my son’s plan auto-renew on 22 April 2026 during this process, without anyone communicating with me about the substance of what was being renewed.

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This is the system the Bill assumes will mediate the new restrictions. It does not work now. Statutory

restrictions imposed on top of a non-functioning review system do not become more reviewable; they

become less. The Committee should not pass restrictive amendments to the Act on the assumption of

a complaints architecture that the Agency itself is currently failing to operate.

8. Recommendations Drawing the foregoing together, I respectfully ask the Committee to recommend the following. The

recommendations are grouped by theme for ease of reference; the order is not a hierarchy of

importance.

Part A — Bill provisions that should be removed or amended

• Recommendation 1: That Part 4 of Schedule 1 (new section 34A — Ministerial percentage reductions in funding components) be removed from the Bill in its entirety. Subsection 34A(5),

which expressly authorises funded supports to be less than the cost of supports the Agency

has itself determined to be reasonable and necessary, should not pass into Commonwealth

law in any form.

• Recommendation 2: That Part 5 of Schedule 1 (new section 50A — automatic 12-month plan renewal) be amended so that renewal is at the participant’s election and so that an

unreviewed renewal does not bar reassessment, alternatively that renewal be a reviewable

decision under section 99.

• Recommendation 3: That new subsection 34(1J) be removed, and that subsection 34(1H)(a) be narrowed so that the parental responsibility presumption does not, on its face, capture the

entire content of paediatric disability support work — supervision, personal care, transport,

emotional support and behavioural support — which is precisely the work a funded support

worker exists to perform.

• Recommendation 4: That subsection 25A(2) be removed, and that “appropriate treatment” be defined to mean treatment that is reasonably accessible to the participant in their actual

financial and geographical circumstances.

• Recommendation 5: That new subsection 34(1F) be removed, so that an absence of generalisable peer-reviewed research cannot override direct clinical evidence of outcomes for

the individual participant — particularly for participants with rare conditions where, as in my

son’s case, the relevant generalisable research literature does not exist and is not being

produced anywhere in the world.

• Recommendation 6: That section 9B be amended to require that functional capacity be assessed in the participant’s actual environment, with explicit recognition that supportive

scaffolding evidences need, not independence.

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• Recommendation 7: That section 48A be removed, or amended to expressly include carer health, treating clinician concern, and inability to obtain reasonable and necessary supports

as grounds for an unscheduled reassessment.

• Recommendation 8: That subsection 34(1C) (the equipment leasing presumption) be amended to exclude paediatric equipment used to address permanent disability, where the

participant’s circumstances are changing only because the participant is a growing child.

• Recommendation 9: That Schedule 3, Part 2 (automated decision-making) be amended to require human review of any adverse automated decision, statutory access to the inputs and

logic of any automated decision, and an express prohibition on automation of decisions about

reasonable and necessary supports, plan reassessment, and participant status. Less than three

years after the Robodebt Royal Commission, the Commonwealth Parliament should not

legislate automated  decision-making  over  participants  with  disability  without  these

safeguards.

Communication, contactability, and reasonable adjustments (Section 3.9)

• Recommendation 10: That section 40A (plan suspension for non-contactability) be amended to require:

• that “reasonable attempts” expressly include written notice to all contact methods on the participant’s record;

• that any suspension be preceded by a written warning identifying the specific contact attempts relied on, the consequences of continued non-response, and the participant’s right

to request reasonable adjustments;

• that response windows be calculated only from the date the participant is documented as available to engage, where the Agency has been given prior written notice of unavailability;

• that reasonable adjustments under the Disability Discrimination Act 1992 (Cth) — including but not limited to written-only communication, scheduled contact only, and the use of a

support person — be provided as of right to any participant or nominee whose disability

affects communication, with those adjustments enforceable against the Agency’s own contact

practices.

• Recommendation 11: That the NDIA be directed, by legislative instrument or operational rule, to confirm in writing — on participant or nominee request — any substantive content of a

planning conversation, plan reassessment, complaint discussion, or compliance interaction

within a defined statutory timeframe. The Scheme’s documentary record should not be at the

Agency’s discretion to maintain.

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Administrative competence and record integrity (Section 3.6)

• Recommendation 12: That, before any evidentiary hierarchy under subsections 34(1E) and (1F) is brought into force, the NDIA be required to demonstrate that its own diagnostic and

demographic record-keeping for participants — particularly participants with rare and

complex conditions — is accurate, auditable, and capable of supporting the literature searches

the new hierarchy would assume. The Committee should record that, at the date of this

submission, at least one participant known to the Committee has incorrect diagnostic

information on the NDIA’s own file.

• Recommendation 13: That the NDIA be required to provide an audit-grade explanation, in writing and within a defined timeframe, of how the funding figures in any plan reassessment

decision were calculated, on request by the participant or nominee — and that an Agency

inability to provide that explanation be grounds for review of the decision under section 100.

Discrimination, equity, and human rights (Section 6)

• Recommendation 14: That the Committee obtain advice from the Australian Human Rights Commission as to whether the parental responsibility provisions in new subsections 34(1G),

(1H) and (1J), the percentage-reduction power in new section 34A, and the non-contactability

suspension power in new section 40A, are consistent with Australia’s obligations under the

Disability Discrimination Act 1992 (Cth) — in particular sections 6 (indirect discrimination) and

7 (discrimination by association) — and with Australia’s obligations under Articles 5 and 28 of

the United Nations Convention on the Rights of Persons with Disabilities.

• Recommendation 15: That any provision of this Bill which has the effect of imposing a condition on the parents or carers of children with disability that is not also imposed on the

parents of children without disability — including the parental responsibility presumption —

be amended to include an express reasonableness exception that takes into account family

structure (including single-parent households), household income, geographical location, the

carer’s own disability status, and carer health.

Sustainability, modelling, and accountability

• Recommendation 16: That the Committee require the Department to produce, before reporting, a long-run sustainability model for this Bill that includes:

• carer workforce participation loss (with reference to ABS Survey of Disability, Ageing and Carers data);

• lifetime income support costs for under-supported participants;

• lifetime health system contact costs for preventable secondary conditions;

• tertiary disability accommodation costs;

• Commonwealth income tax revenue forgone where carers cannot maintain workforce participation;

and that the Committee report whether the Bill’s sustainability claim survives the inclusion of those

figures.

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• Recommendation 17: That, before this Bill proceeds to a vote, the Department be required to produce a Gender Impact Analysis and a Cost-of-Living Impact Analysis quantifying the

  projected effect of the parental responsibility provisions on (a) women’s workforce

participation, (b) single-parent households, and (c) household financial stress in the current

cost-of-living environment, with reference to ABS CPI, Living Cost Indexes, electricity prices,

and Wage Price Index data to March 2026.

• Recommendation 18: That the Committee make findings as to the current functioning of the NDIA’s complaints and internal review processes, and decline to endorse any restriction on

reassessment, renewal, or eligibility that assumes those processes function adequately.

Part B — Structural reforms the Committee should recommend in place of the Bill

• Recommendation 19: That the NDIA publish transparent functional budget bands within 12 months, linked to functional capacity, intensity of support need, life stage, informal support

  availability, complexity, and geography — with recorded reasons for deviation, an

independent review pathway, and a top-up mechanism for higher needs — in place of the

discretionary planning model that produces the current postcode lottery.

• Recommendation 20: That the NDIA establish specialist planner streams for autism and developmental disability, psychosocial disability, complex physical disability, degenerative

conditions, children with high support needs, complex communication, continence and

personal care, and home and living — with mandatory specialist involvement in any decision

to reduce funded supports for these cohorts.

•  Recommendation  21:  That  the Government  invest  in  real-time payment  integrity

infrastructure —  duplicate-claim  detection, impossible-hours checks, provider pattern

monitoring, and risk-based audit — as the primary instrument of NDIS cost discipline, in

preference to participant-facing measures.

• Recommendation 22: That the NDIA establish complexity-based pricing tiers (low, moderate, high, specialist, with rural and remote loadings) to address provider behaviour without cutting

participant hours.

• Recommendation 23: That any tightening of NDIS access for children — including any operationalisation of the Thriving Kids foundational supports model — be conditional on those

alternative supports being demonstrably operational at scale in the participant’s geographic

area, with published waitlist, quality, and outcome data, and an escalation pathway back into

the NDIS where foundational supports are not in fact available.

• Recommendation 24: That the NDIA pilot opt-in Standard Capacity-Building Packages for adult participants with moderate, stable functional support needs, with a three-year default

term, light-touch annual check, full functional review at three years, and full safeguards

including top-up and exit pathways — as a measure to reduce administrative churn without

reducing participant support.

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PART B

An alternative reform path

9. An alternative reform path: fix the NDIS, do not flatten it Part A of this submission set out why the Bill, in its current form, should not pass. This Part sets out

what should be done instead. I have written it because I do not think it is enough, in front of this

Committee, to be against something. The Scheme is fiscally and politically under pressure, and that

pressure is real. The Bill is one answer to that pressure. There are better answers.

This Part is presented as a constructive alternative — a set of reforms that would address the

sustainability problem the Bill claims to address, without writing indirect disability discrimination into

Commonwealth law, without  cost-shifting onto  families, and without putting Robodebt-style

automation in charge of decisions about people with disability.

9.1 Framing: the wrong choice the Bill asks the Committee to make

The Bill is built around a false choice — that the Committee must choose between protecting people

with disability and protecting the taxpayer. It is a false choice because the structural problems driving

NDIS cost growth are not, in the main, problems of excessive participant generosity. They are

problems of inconsistency, administrative churn, leakage, and lack of integration with the systems

that should sit underneath the Scheme.

The Parliamentary Budget Office’s own figures make the fiscal stakes precise. NDIS expenditure is

projected to rise from 1.7 per cent of GDP in 2024–25 to 2.2 per cent of GDP in 2034–35. The Scheme

Actuary has projected total participant costs rising from $55.2 billion in 2026–27 to $92.3 billion in

2032–33, an average growth rate of 9 per cent per year against a National Cabinet target of 8 per cent.

The PBO further estimates that a one-percentage-point change in growth — in either direction —

moves total expenditure by approximately $8 billion (one point lower) to $19 billion (one point higher)

by 2034–35.

That is the actual fiscal question in front of the Committee. The question is not whether children with

permanent disability should receive less. The question is whether the Scheme can be brought from 9

per cent annual growth to 8 per cent annual growth through measures that improve consistency,

integrity and capacity-building — or whether it can only be done by cutting funded supports to

participants and shifting the cost onto unpaid carers. The Bill is the second path. This submission

proposes the first.

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9.2 What is actually driving NDIS cost growth

The PBO identifies two structural drivers: more participants entering the Scheme, and rising average costs

per participant. Behind those two figures sit five operational realities, all of which the Bill leaves untouched:

• More people, higher average costs. This is not, on its face, a problem of over-generous individual decisions. It is structural — and the Bill’s response (cut funding components by percentage) does not address the structural drivers.

• The NDIS as the system of last resort. When education, mental health, child development, and community systems fail to provide basic support, families are pushed onto the NDIS. The NDIS then carries costs that should have been prevented or shared earlier. The NDIS Review itself recommended a foundational supports tier outside the individualised Scheme — but that tier is not yet operational at scale.

• Inconsistent planning. Participants with similar disabilities, similar functional needs, and similar evidence receive markedly different decisions depending on planner, region, timing, advocacy skill, and report quality. That drives appeals, repeated reports, distrust, and direct administrative cost — none of which the Bill fixes.

• Payment integrity and leakage. The 2024–25 Budget allocated $468.7 million over five years to NDIS reform measures, including $268.1 million specifically for fraud prevention and participant protection. Government has recognised the integrity problem. But the Bill’s response is to tighten the rules on participants rather than to invest in real-time payment integrity, provider monitoring, and audit trails.

• Administrative churn. Families of children with complex disability spend the equivalent of a part- time job assembling evidence — OT, speech, physiotherapy, psychology, continence nurses, orthotics, specialists, medical letters — to justify supports that everyone involved already knows are required. Every report costs money. Every report consumes professional time the country does not have. The Bill makes this worse, not better, by introducing a statutory evidentiary hierarchy that demotes individualised clinical evidence below generalisable peer-reviewed research that, for rare conditions like my son’s, does not exist.

Each of these is a sustainability lever. The Bill pulls none of them.

9.3 Six structural reforms that would address the real problem

The following reforms are not novel. They draw on the NDIS Review’s own recommendations, on standard

insurance-scheme design principles, and on what works in comparable public administrative schemes

overseas. They are presented here as an integrated alternative to the Bill.

Reform 1 — Transparent functional budget bands

Participants with similar functional needs should attract similar funding ranges. The NDIA should publish

budget bands linked to functional capacity, intensity of support need, life stage, informal support availability,

complexity, and geography. Deviations from band should be permitted but require recorded reasons, with

an independent review pathway and a top-up mechanism for higher needs. This addresses the postcode

lottery directly. It would reduce disputes, reduce appeals, reduce the volume of repeat reports, and make

cost growth predictable. It would also remove the discretion that makes administrative discrimination

possible — discretion my family has been on the wrong end of.

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Reform 2 — Specialist planning teams

Generalist planners are making decisions about disabilities they do not understand. The NDIA should create

specialist planner streams — for autism and developmental disability, psychosocial disability, complex

physical disability, degenerative conditions, children with high support needs, complex communication,

continence and personal care, and home and living. Specialist decision-makers make better decisions. Better

decisions mean fewer wrong decisions, fewer appeals, fewer reports written defensively, less trauma to

families, and lower system cost over the lifetime of a participant’s engagement with the Scheme.

Reform 3 — AI as decision support, never decision maker

Used properly, technology should be making the NDIS more consistent and harder to defraud. The right use

of AI in this Scheme is to check evidence completeness, compare proposed decisions against published

budget bands, flag anomalies, detect duplicate or impossible claims, monitor provider patterns, and support

audit trails. The wrong use is to put a computer program in charge of any decision about a person with

disability. The Bill’s Schedule 3 Part 2 risks the second when it should be doing the first. Less than three years

after the Robodebt Royal Commission, the Commonwealth Parliament should not be authorising automated

administrative decision-making over the population the Commission identified as most vulnerable to

administrative harm. Decision-support yes; decision-making no.

Reform 4 — Real-time payment integrity

The NDIS is currently a payments system in which fraud and overcharging are detected, when they are

detected at all, after money has left the Scheme. Modern payment systems do not work that way. The

Scheme needs real-time anomaly detection; duplicate-claim checks; impossible-hours checks (a worker

cannot be in two participants’ homes at the same time); provider pattern monitoring; risk-based provider

audits; stronger identity verification; and targeted compliance against high-risk patterns rather than blanket

suspicion of participants. This protects genuine participants — like my son — from being collateral in

compliance exercises aimed at fraud committed elsewhere in the system.

Reform 5 — Pricing that matches complexity

Flat or poorly differentiated price caps reward volume over quality. The Scheme should price tiers explicitly

— low-complexity support, moderate support, high-complexity support, specialist disability support, with

rural and remote loadings where justified. This reduces ‘NDIS premium’ behaviour by providers, protects

participants with complex needs from being treated as commercially unattractive, and improves value for

money in a way that does not require cutting funded hours.

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Reform 6 — Foundational supports must be real before NDIS access tightens

The NDIS Review correctly identified that some supports — particularly for children with developmental

delay and lower support needs — should sit outside the individualised Scheme in a foundational supports

tier. That tier is not yet operational at scale. The Government’s Thriving Kids announcement committed $4

billion over five years to foundational supports for children aged eight and under, but the supports

themselves are not consistently available across Australia. Any reform that tightens NDIS access for children

must be sequenced so that the alternative tier is genuinely operating first, with measured waitlists, measured

quality, measured outcomes, and a real escalation pathway. Otherwise the ‘reform’ is cost-shifting onto

families — which is precisely what the parental responsibility provisions of this Bill would entrench.

9.4 A new idea: opt-in Standard Capacity-Building Packages

Beyond the structural reforms above, I want to put a specific proposal in front of the Committee that I have

not seen elsewhere in the public debate — and which I think has real fiscal potential without harming

participants. The administrative burden of full annual planning is enormous, and for a substantial cohort of

participants, it is unnecessary.

Some participants — particularly adults with permanent, stable disability whose support needs are

predictable and centred on capacity-building rather than high-intensity personal care — do not need a fully

renegotiated plan every year. The Scheme should offer them an alternative: an opt-in Standard Capacity

Building Package.

Framed correctly, this is not a diagnosis-based bucket. It is a functional offer. Any NDIS-eligible adult with

moderate, stable functional support needs and no high-intensity home and living component could elect into

a standard package. A late-diagnosed autistic adult is a good worked example — needing psychology, OT,

executive function support, sensory regulation strategies, allied health assistant implementation, low-cost

assistive technology, and routine-building — but the same logic applies to many adult cohorts whose needs

are stable and capacity-building in character.

A package might include psychology, OT, allied health assistant implementation, capped low-cost assistive

technology, and capacity-building tools, run on a three-year term with a light-touch annual check and a full

functional review at three years (or earlier on a trigger event). It would deliberately exclude open-ended

support worker hours and unnecessary annual reassessments. Participants would retain choice over the mix

within the capacity-building categories.

The savings are not from cutting supports. The savings are from removing the repeated reports, repeated

planner hours, repeated reviews, repeated disputes, and repeated administrative overhead that the current

annual planning model produces for participants whose needs do not change year to year. Safeguards are

essential — opt-in only, top-up pathway, exit pathway, early reassessment on life change, and specialist

assessment for complex cases.

This is one example of what reform that is genuinely fiscally serious looks like. It reduces system cost by

reducing system churn. It does not reduce participant support.

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9.5 The Heckman foundation — and why early investment is the actual sustainability play

Section 4 of this submission set out the early-intervention economics drawn from Professor James Heckman’s

Nobel-Prize-winning work. The point bears restating in the reform context. The Heckman literature is not a

claim that every NDIS support produces a 13.7 per cent annual return. The claim is more general and more

important: early, high-quality, capacity-building investment in human capability produces stronger long-run

returns than crisis intervention later. Skill begets skill. Adolescent and adult remediation of the consequences

of early under-investment is both expensive and only partially effective.

A Scheme designed on Heckman principles would invest heavily and early in:

• Early childhood intervention for children with disability — properly funded, not cost-shifted to foundational supports that do not yet exist;

• Capacity-building supports across the life course — therapy aimed at independence, not maintenance;

• Assistive technology that reduces ongoing support hours;

• Family and carer support that prevents carer burnout, carer mental illness, and the breakdown of informal support networks (which then forces the Scheme to fund formal replacements);

• Functional independence supports that increase the probability of paid employment, reducing lifetime income support costs and increasing tax revenue.

The Bill in front of the Committee does almost the opposite. It cuts capacity-building hours. It transfers care

to unpaid carers, increasing the rate at which those carers themselves become unwell and unable to work. It

tightens evidentiary thresholds that disadvantage rare conditions, where individualised clinical evidence is

the only evidence that exists. It cuts paediatric equipment by preferring leasing for children who are growing.

Every one of these is an anti-Heckman move. The Committee should be asking the Department to produce

its long-run economic modelling — including carer workforce loss and lifetime income support — and to

explain why those costs are not in the sustainability figures the Bill is being sold on.

9.6 The taxpayer case — what the NDIS should be sold as

The NDIS has a public-perception problem. That problem will not be solved by cutting individual participant

funding. It will be solved by the Government being able to say, credibly:

The NDIS is an investment in independence, not a blank cheque. We have rebuilt it around consistency, integrity, and capacity-building. Genuine participants are protected. Waste is reduced. The Scheme that the country pays for is a Scheme the country can trust.

That is the message that holds public support for the Scheme. It is the only message that does. ’We cut the

funding for kids with chromosomal deletions’ is not a politically survivable position once it is described

accurately. ‘We made the Scheme work properly so it could keep supporting them’ is.

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If the Scheme is run on the reform model above — published budget bands, specialist planners, decision

support AI, real-time integrity controls, complexity-based pricing, real foundational supports, opt-in capacity

building packages, and Heckman-style early investment — the taxpayer benefits in measurable, reportable

ways:

• Reduced hospital and mental health crisis demand from carer burnout and participant decompensation;

• Increased workforce participation by carers no longer absorbing the disability load the Scheme has declined to fund;

• Reduced lifetime income support costs as participants achieve functional independence;

• Reduced provider overcharging and duplicate claiming;

• Reduced administrative cost from appeals, repeat reports, and disputes;

• Reduced cost of family breakdown and statutory child protection involvement in households crushed by unfunded disability load.

All of those are real fiscal benefits. None of them appear in the Bill’s costings, because the Bill is not designed

to capture them. A reform designed to capture them — instead of the Bill — is the proposal in front of the

Committee in this Part.

9.7 The message — and why the Committee should adopt it

The strongest framing for the Scheme, and the strongest framing for this Committee’s report, is not ’spend

more’ and it is not ‘cut harder’. It is:

Fix the NDIS. Do not flatten it. Build a Scheme that supports people properly, stops waste, and delivers the insurance promise it was created to deliver.

That message is true. It is fiscally defensible. It is consistent with the NDIS Review. It protects the participants

the Scheme was created for. And it is what a Senate Committee can, in good conscience, recommend without

being on the wrong side of a future inquiry into the harm caused by the alternative.

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PART C

Conclusion

10. Conclusion There is, fundamentally, very little wrong with the National Disability Insurance Scheme Act 2013 in

its current form. What is wrong is how it is being administered. Decisions are not being explained.

Guidelines are not being followed. Complaints are not being investigated — and when they are

inconvenient, they are closed inside windows the Agency itself controls. Clinical evidence is being

dismissed in favour of literature that, for children like mine, does not exist. Parents are being told that

disability-specific care is parenting. Women like me are being told that our inability to work is a lifestyle

choice. The Agency cannot, today, accurately record what chromosome my son’s deletion is on — and

is asking the Parliament to grant it new powers over his future.

This Bill does not fix any of that. It writes the worst of it into law.

It gives the Minister a percentage-cut instrument over whole groups of supports, with an avoidance

of-doubt provision expressly confirming that participants may be funded at less than the cost of

supports the Agency has already determined to be reasonable and necessary. It rolls under-funded

plans forward automatically for 12 months, without any reviewable decision attaching to the renewal.

It restricts the right to ask for a reassessment when a family is falling apart. It writes into primary

legislation that everything a support worker does for a child — supervision, personal care, transport,

emotional support, behavioural support — is presumptively parental work. It tells people in remote

communities that the treatment they cannot afford or cannot reach is, for legal purposes, available to

them. And it authorises automated decision-making over the disability population less than three

years after the Robodebt Royal Commission warned the Commonwealth, in plain terms, what happens

when automated systems are turned on the people least able to push back.

This Bill also does something the Committee should not let pass without comment. It writes, into

Commonwealth law, a condition on the parents of children with disability that no parent of a child

without disability is required to meet — and it does so in the middle of the worst sustained cost-of

living pressure on Australian households in a generation. That is indirect discrimination by association

under the Commonwealth’s own Disability Discrimination Act 1992, against a population that is

already 70 per cent women, already over-represented in the lowest income quintiles, and already

statistically excluded from full-time work. The Bill compounds an existing inequality. It does so

deliberately. And it does so at a moment when most Australian families have no household buffer left

to absorb the additional load.

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The Bill is not the only path to fiscal sustainability. Part B of this submission has set out a coherent

alternative: published functional budget bands; specialist planning streams; AI as decision support

rather than decision-maker; real-time payment integrity targeting fraud and overcharging rather than

participants; complexity-based pricing; foundational supports made operational before NDIS access is

tightened; opt-in capacity-building packages for stable cohorts; and an explicit Heckman-style early

investment design. That is a sustainability path that delivers the one percentage point of GDP growth

differential the Parliamentary Budget Office identifies as the actual fiscal question — without writing

disability discrimination into Commonwealth law, and without cost-shifting onto unpaid carers. The

Committee can recommend the reform path. The Committee should.

If a business of mine were managed the way the NDIA is currently managing its planning and

complaints functions, I would, as the owner, be appalled. The Commonwealth is not appalled. The

Commonwealth is asking this Committee to legalise the current management.

I am asking the Committee not to.

I am asking on behalf of my son, who is a person with a permanent disability who deserves a Scheme

that meets him where he is.

I am asking on behalf of the children I taught in Cunnamulla, Mount Isa, and Thursday Island, whose

families do not have what mine has — and whose lifetime outcomes will be decided by which side of

this Bill the Senate lands on.

I am asking on behalf of every carer in this country who has, like me, sat in a doctor’s surgery with

documented suicidal ideation because the Scheme that was supposed to support their child cut their

funded supports by more than half and could not explain why.

And I am asking on behalf of the carers — and there are many — who do not write submissions. The

Committee will not hear from most of them. They are too tired, too frightened, too sick, too

administratively exhausted, or too far from the help they need to put their names on a document that

goes to Canberra. Their absence from the public record is not their consent. It is the predictable

consequence of a Scheme that has already broken them, and a Bill that proposes to break them

further.

My husband and I are working hard, on every front available to us, to create generational change for

the better. We have always operated from one philosophy: we get one chance to build a future for

our boys, and especially for our son with disability. The fear that motivates us — the fear that this

submission is one part of confronting — is one we never want to live with.

We do not want to look back and say, “I wish I had have.”

Thank you for the opportunity to make this submission. I am available to provide further information

or to give evidence to the Committee in any format that the Committee finds useful.

Toowoomba, Queensland

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Appendix A — The costed disability economy of our household

This appendix sets out, in concrete and conservative figures, the annual financial cost to our family of

the disability-specific care that the NDIS does not adequately fund — and the workforce income

forgone as a direct consequence. The figures use ABS, Australian Energy Regulator, and Australian Tax

Office reference data current to early 2026, with conservative assumptions stated in each line. I have

built it because the Committee should not have to take ‘we absorb a lot’ on trust. Here is the number.

A.1 Disability-specific laundry — annual cost

Our household runs a minimum of three to four disability-specific loads of washing every day, 365

days a year. The loads include full bedding — sheets, mattress protector, water-absorber underpad,

pillowcases, and on bad nights the doona, doona cover and pillows — because my son’s incontinence

saturates the bed overnight. This is on top of an ordinary household washing load for a family of six.

Per-load cost (conservative mid-range, Queensland 2026):

• Washing-machine electricity: 1.0 kWh per load × $0.30/kWh = $0.30

• Dryer electricity (assuming half of loads air-dried in good weather, half dryer): 3.0 kWh × $0.30/kWh × 0.5 = $0.45

• Water (front loader, ~70 litres per load): $0.28

• Detergent (mid-range supermarket): $0.55 Per-load cost: approximately $1.58. Annual cost (3 disability-specific loads × 365 days × $1.58):

$1,730 per year.

This is a conservative figure. In winter, the dryer load proportion is higher. The figure does not include

depreciation on the washing machine, dryer, water-absorber underpads (replaced annually), or the

cost of replacing bedding that fails earlier than it otherwise would because of the frequency of

washing.

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A.2 Specialist physiotherapy travel — annual cost

My son attends specialist pelvic floor physiotherapy at the Mars Clinic in Brisbane, approximately 127

km from Toowoomba. Treatment cadence is:

• Term-time: fortnightly sessions for incontinence management (approximately 26 trips per year)

• School holidays: five consecutive days of half-hour sessions every school holidays (four school holiday blocks per year = 20 days)

Total annual travel: approximately 11,684 km per year for specialist physiotherapy alone.

Fuel cost (Kia Carnival, diesel, ~9 L/100 km, diesel ~$1.85/L in regional Queensland early 2026):

approximately $0.16/km.

Annual fuel cost: approximately $1,870 per year.

Vehicle wear (servicing, tyres, depreciation at ATO standard rate ~$0.88/km for additional kms over

normal household use) would add several thousand dollars more. I have not included this figure

because the methodology is contested. The fuel-only figure is conservative.

A.3 Brisbane accommodation during physiotherapy intensives

Hugh attends five consecutive days of treatment every school holidays. Doing the 254 km round trip

daily — four hours in the car — for a child managing active incontinence is not clinically appropriate.

We therefore accommodate in Brisbane for those intensive weeks.

• 4 school holiday blocks × 5 nights × ~$180/night budget accommodation: approximately $3,600 per year

Annual accommodation cost: approximately $3,600 per year.

This does not include meals away from home or any of the practical costs of being away from our

usual household systems for a working week at a time.

A.4 Lost workforce income

I am a fully qualified senior teacher with a specialisation in inclusive education. As at 2026, the

Queensland Department of Education’s classified salary for a Senior Teacher at the top of the band is

approximately $112,000 per annum, plus 12.75 per cent superannuation.

I am not able to work — not because I cannot perform the role, but because the disability-specific care

load that the NDIS has declined to fund (three to four loads of laundry every day, three to five allied

health appointments a week, the Brisbane physiotherapy travel set out above, and full-time

coordination of my son’s care and the NDIS process) exceeds, on any honest accounting, the hours

available in a working day. I cannot reliably commit to a casual school day, let alone a permanent

position.

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• Forgone salary: approximately $112,000 per year
• Forgone superannuation contribution: approximately $14,300 per year
• Forgone Commonwealth income tax revenue (at marginal rate): approximately $26,000– $30,000 per year

Total annual workforce income loss to our family: approximately $112,000. Total annual loss to the

Commonwealth in forgone tax revenue: approximately $26,000–$30,000.

This is a single household. I am, on the available data, the median case for a mother of a child with

significant disability in regional Queensland. Multiply this by the number of similar households in

Australia and the Commonwealth’s net ‘sustainability’ position from the parental responsibility

provisions of this Bill changes sign.

A.5 Total

Summing the foregoing, the annual cost of my son’s disability that is borne by our family rather than

by the Scheme — for the four items above only — is:

• Disability-specific laundry: ~$1,730
• Specialist physiotherapy travel (fuel only): ~$1,870
• Brisbane accommodation: ~$3,600
• Lost workforce income: ~$112,000 Approximate total annual cost to our family for the four items above: $119,200, of which $112,000

is forgone workforce income and approximately $7,200 is direct out-of-pocket disability cost not

funded under the plan.

That total is the floor of what we are absorbing, not the ceiling. It captures only the four items I have

been able to cost cleanly. It does not include:

• the low-cost assistive technology our family funds in its entirety, because the plan made no allocation for unforeseeable need (Section 2.3);

• the support worker hours we self-fund out of pocket on top of the five hours per week funded under the plan, because five hours per week is not a clinically viable level of support for a child

with my son’s profile;

•   additional  allied health appointments — occupational therapy, physiotherapy, speech

pathology, psychology — that we fund privately because the funded hours are clinically

inadequate to deliver the therapeutic outcome the treating clinician has identified;

• specialised continence aids that do not fit standard Australian products and are imported from other continents at the family’s cost;

• equipment, modifications, and adaptive products;

• medical co-payments and specialist appointment fees not bulk-billed;

• the cost of ordinary household expenses inflated by the cost-of-living pressures set out in Section 6;

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• the unpaid clinical work I perform daily in designing and administering my son’s at-home therapy program (Section 2.2) — work that would otherwise be performed by an allied health

professional and an allied health assistant, neither of which is funded.

It also does not include the cost paid in psychological harm — the suicidal ideation on 18 June 2025,

clinically documented by Dr on 20 June 2025 — for which there is, properly speaking, no

figure.

The four-item total is therefore not the cost of my son’s disability to our family. It is the cost I have

been able to defensibly quantify in front of a Senate Committee. The actual figure is materially higher.

And the central fact remains: while I am absorbing it, I am not earning the approximately $112,000

per year I would otherwise pay tax on. The arithmetic of that is uncomfortable for the Commonwealth,

and it should be.

A.6 What this means for the Bill

The Committee is being asked to pass legislation that:

• Embeds a parental responsibility presumption that codifies the current administrative practice of transferring this load onto parents;

• Permits the Minister to cut funded supports across whole groups of supports by percentage, expressly stating the funded amount may be less than the cost of the support;

• Auto-renews underfunded plans for another 12 months without a reviewable decision;

• Tightens the definition of permanence so that financial and geographical barriers to treatment are statutorily immaterial.

Each of those provisions, in operation, will increase the figures above. The ‘sustainability’ the Bill

claims to deliver is, on these numbers, a transfer of cost from the Commonwealth to households —

overwhelmingly to mothers — at a moment when those households are already absorbing the worst

sustained cost-of-living pressure in a generation. It is not a saving. It is a hidden tax on a population

that the Disability Discrimination Act 1992 (Cth) was passed to protect.

A.7 Methodology notes

The figures in this appendix are intended to be conservative and verifiable. Where the precise figure

is contested, the lower end of the plausible range has been used. The sources are:

• Electricity cost per kWh: $0.30/kWh, consistent with Australian Energy Regulator Default Market Offer reference prices for South East Queensland 2025–26 and Canstar reference price data April 2026.

• Water cost: $4/kL, consistent with Toowoomba Regional Council 2025–26 residential rates.

• Diesel cost: $1.85/L, regional Queensland average early 2026.

• Senior Teacher salary: Queensland Department of Education classified rates 2026.

• Inflation and cost-of-living data: Australian Bureau of Statistics Consumer Price Index and Selected Living Cost Indexes, March quarter 2026.

The Committee is invited to require the Department to produce its own equivalent costing — including

the workforce income loss to carers and the Commonwealth tax revenue forgone — before the Bill

proceeds to a vote.

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