Submission 121 — Ms Pia Kyre — NDIS Future Generations Bill

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 121

Pia Kyre

|

18 May 2026

Committee Secretary Senate Standing Committees on Community Affairs PO Box 6100 Parliament House Canberra ACT 2600 community.affairs.sen@aph.gov.au

Submission to the Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Re: opposition to the Bill in its current form and call for the underlying 2026/27 Budget settings to be reversed

Dear Committee Members,

Thank you for the opportunity to make a submission to the Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 (“the Bill”). I write as a private individual: a late-diagnosed AuDHD adult living in Port Macquarie on the Mid North Coast of NSW. I am also the parent of an adult son who is AuDHD. My submission is grounded in lived experience of growing up and entering adulthood without identification or support for neurodevelopmental disability — precisely the outcome the NDIS was created to prevent — and in my current view of a scheme that is being contracted at exactly the moment the next cohort of late- identified adults needs it to arrive.

I respectfully ask the Committee to recommend that the Bill not proceed in its current form, and that the underlying 2026/27 Federal Budget settings on which it relies be reversed or substantially redesigned. While I support genuine integrity measures that protect participants from exploitation, the Bill as drafted will, in my view, cause disproportionate harm to participants — particularly those in regional areas and those with cognitive, executive function, or communication-related disability — and will lock in by legislation a contraction of the scheme that has not been justified through co- design with the people most affected.

Summary of position

In summary, my submission makes the following points about the Bill and the Budget settings that gave rise to it:

1. Adults are not covered by the Foundational Supports response. Thriving Kids is targeted at children aged 8 and under. Adults at the front of the NDIS access pathway face a tightened eligibility framework with no equivalent Commonwealth-funded alternative.

2. The Thriving Kids program is not adequately co-designed and will fail many neurodivergent children, producing the next generation of late-diagnosed, traumatised adults the NDIS was created in 2013 to prevent. It also returns disability support to public systems the NDIS was designed to take pressure off.

Page 1 of 16

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 121

3. The reforms misidentify the problem. They treat participants and small providers as the primary integrity risk, rather than addressing the unregistered provider market and the systemic complexity that enables exploitation.

4. The compliance burden is being shifted onto the most vulnerable participants. Longer record retention, shorter claim windows, and stricter documentation requirements impose executive function demands that many people with cognitive, intellectual, neurodevelopmental, or psychosocial disability cannot reasonably meet without support that the scheme itself is not funding.

5. Automated decision-making and formula-based planning are inappropriate for complex, fluctuating, or co-occurring disability. These approaches systematically disadvantage participants whose needs do not fit standardised assessment tools.

6. Periodic and block-style funding is unsuitable for fluctuating need. Participants who require additional support around hospital admissions, condition flares, or crises will be unfunded at precisely the moments they most need support.

7. The disability support workforce is in chronic burnout, and the Bill makes this worse. Casualisation, inadequate training, and the absence of permanent employment pathways produce overwhelmed workers, with direct downstream harm to participants and family carers.

8. Ministerial price caps and tightened provider regulation will reduce service availability in regional NSW. Port Macquarie and similar regional centres already face thin markets, long waitlists, and limited specialist availability.

9. Treating record-keeping failures as debts owed to the Agency is punitive and disproportionate. It conflates administrative error with fraud and will deter legitimate use of supports.

10. The Bill does not align with the policy intent of the NDIS Act 2013, which establishes a person-centred scheme grounded in choice and control.

My background and standing to make this submission

I am a late-diagnosed AuDHD adult. For most of my life I lived without identification, support, accommodation, or any framework for understanding how my neurodivergence shaped daily living, work, relationships, and the cumulative cognitive cost of navigating systems not designed for people like me. That experience — the experience of being the kind of adult the NDIS Act 2013 was meant to reach — is the lens through which I now view the Bill before this Committee.

What this looked like in practice across a lifetime is, in my view, directly relevant to how the Committee should understand the cost of failing the next cohort of late-identified adults. I completed my HSC in 1988, but burnt out in my final year and did not achieve a result that reflected my actual ability. Over the years that followed I began four separate undergraduate degrees, carrying a distinction average each time, and was unable to sustain any of them beyond the first couple of years of part-time study. The pattern was not a failure of capacity. It was the predictable outcome of an unsupported neurodivergent adult attempting to navigate institutions designed around neurotypical executive function, social load, and pacing.

My working life followed the same pattern. I worked a succession of jobs — frequently casual, frequently unskilled, frequently in customer service — and burnt out repeatedly from the social demands of those environments. I did not understand the implicit social dynamics of workplaces and

Page 2 of 16

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 121

was often misread, misunderstood, or actively manipulated and bullied by peers who were more aware of my social deficits than I was. Periods of anxiety and depression came in waves, interleaved with bursts of productivity driven by a desperate need to be seen and to live up to the academic potential that had been visible to others but never adequately supported. None of this was recognised as neurodivergence at the time. It was read by others, and eventually by me, as personal failure.

This is what an unidentified, unaccommodated neurodivergent life costs. It is the kind of biography the NDIS was created in 2013 to make less common. The Bill before this Committee will, in its current form, make it more common.

I currently live in Port Macquarie on the Mid North Coast of NSW, and have previously lived in Kempsey. Across both communities I have observed the realities of regional service delivery directly: thin specialist markets, limited adult-focused neurodivergence services, long waitlists, and a heavy reliance on travel to access appropriate clinicians. My adult son is also AuDHD, which means our household is one in which the practical effects of policy decisions on neurodivergent adults are not abstract.

My lived experience of both the clinical and disability support systems directly informs this submission. In 2022, my son and I were both in severe burnout. The therapy team supporting him at the time — speech, occupational therapy and behaviour support — pushed for compliance and engagement-based intervention despite my repeated reporting of our state. When I cited trauma- informed research and the evidence base for low-demand parenting as the appropriate response to autistic burnout, those clinicians colluded with the then Support Coordinator to characterise my approach as “lazy” and “indulgent,” and to warn that I was “creating a rod for my own back.” Recommendations included forced attendance at in-home sessions in which therapists would follow my son into his bedroom to continue therapy, would press for forced eye contact and participation, and would attribute his subsequent dysregulation to me “not trying hard enough.”

The context in which this was occurring made the failure significantly more serious. My son was attending a support unit at his public high school — a setting with class sizes of six students, one teacher and one aide. For his presentation, this ratio was woefully insufficient. I advocated repeatedly for additional 1:1 support and was repeatedly denied. During this period he was experiencing daily episodes of significant self-harm at school. He was also being frequently taunted. One of his vocal stims to this day, four years later, is the phrase “are you retarded?” — the exact words used to abuse him, now lodged permanently in his own voice. The day he came home repeating that phrase, with a significant laceration on his forehead from self-harm, was the day I resolved to remove him from the school regardless of my own overwhelm. While deeply burnt out myself, I navigated the process of registering and then implementing home schooling — a substantial administrative and educational undertaking that I was attempting under conditions of acute crisis. The same allied health team that had failed to recognise my son’s burnout ridiculed me for finding the home schooling registration process difficult, accusing me of “faking” that I was struggling with it. The compounding burnout, trauma and shame this produced — at exactly the time my son most needed me to be functioning — is difficult to overstate.

The route that should have caught all of this — independent disability advocacy — was itself overloaded to the point of being unable to help. The advocate I was eventually able to speak to was carrying approximately double the caseload recommended for the role. He explained that this was

Page 3 of 16

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 121

the result of state-wide administrative amalgamation that had reduced the number of disability advocates available, occurring at the same time that community need was rising. The safety net was structurally too thin to catch us, not through any failing of the individual advocate. The 2026/27 Budget contains no new investment in independent disability advocacy, which means this structural under-capacity will continue precisely as the Bill increases the volume of participants and families needing advocacy support to navigate tighter eligibility, automated decisions, and a more punitive compliance environment.

The period that followed left both of us deeply traumatised, isolated, and gaslit. We became, in our own community, pariahs and perceived failures: a son too disabled to remain in mainstream school, and a mother apparently unwilling to make him comply. Neither characterisation was accurate. Both were the product of a service system that punished us for the very behaviours that should have triggered support.

There is a specific and underappreciated harm in the way these events unfolded that I ask the Committee to take seriously. The 2022 experience did not only fail my son and me in the moment; it actively made it harder for either of us to engage with allied health and NDIS-funded supports going forward. The therapeutic relationship itself became a trauma trigger. Re-engaging with services has had to be approached cautiously, slowly, and at significant personal cost. This is a structural risk the Committee should be aware of: poorly delivered, compliance-driven supports do not merely fail to help — they foreclose future help-seeking, sometimes permanently. A Bill that intensifies the compliance orientation of NDIS-funded supports will produce more participants and families who, having been harmed by services that were meant to help, withdraw from the scheme altogether. That outcome will not appear in any savings calculation, but it is real.

I want to describe what this looks like in our household today, in 2026, because the harm I am describing is not historical. My son and I rarely leave the house. I have not engaged respite services that we are technically entitled to access, because, as I have come to put it, there is no respite in white-knuckling a night away from one another waiting for the failure of support to occur. I carry a constant, low-level fear that any episode of my son’s dysregulation will result in another support worker leaving — and the consequence of that, for him and for me, is not one I can absorb again. The household is, in effect, organising itself around the anticipation of further service failure. This is a measurable cost of the 2022 events that the system that produced them has never acknowledged, let alone addressed.

The specific event I referenced earlier — an overwhelmed support worker returning my son home in a panic — occurred in 2019 and produced a deep personal crisis in me. I had lost my own sibling to suicide in 2001, and so I knew acutely what it means to be left behind. Despite that knowledge, for a sustained period after the 2019 incident I struggled daily with the futility of my existence. I am no longer in that place, and I want the Committee to understand why: because I eventually found a small handful of neurodivergent providers who support me now and who understand my trauma unconditionally. The system did not deliver them to me. I found them through my own effort, and they sustain me. I am here to write this submission in part because of their work.

This matters for how the Committee reads the Bill. The providers who actually meet the needs of neurodivergent participants in our community are, in my experience, the small, often neurodivergent- led practitioners working in conditions the Bill will make significantly harder. The combination of ministerial price caps, tightened registration requirements, deed-of-arrangement obligations for plan

Page 4 of 16

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 121

managers, and the broader compliance load the Bill introduces will predictably squeeze exactly the kind of provider that, in my own life, has been the difference between despair and engagement. I worry for them. If they exit the market, or burn out under the additional administrative load the Bill imposes, the participants they currently sustain will lose what is, in many cases, the only effective support relationship they have. The Bill should be assessed against this risk specifically: not whether large corporate providers can absorb the new compliance environment, but whether the small, neurodivergent-led providers who are actually doing the work of meeting complex need can survive it.

There is a further consequence I would ask the Committee to take seriously. Because of our reduced engagement with funded supports — engagement that has been reduced by the trauma the system itself caused — there is a real risk that, under the new functional capacity assessment framework the Bill establishes, our future access to therapies and respite will be calibrated against current low utilisation. In other words, the very fact that we have been forced to withdraw from services to protect ourselves from further harm may be used as evidence that we do not need them. This is a perverse outcome that the Bill in its current form does nothing to guard against, and it will not be unique to us. It is the predictable consequence of an assessment framework that reads need from utilisation data rather than from circumstance.

I also want to speak, briefly, to what this looks like at night. I am the child of immigrants who have both passed. My son’s father was the perpetrator of family and domestic violence against us. My son has no family in his corner other than me. I frequently lie awake wondering what will become of him after I die. The government’s failure to act on the recommendations of the 2023 Disability Royal Commission, together with the contraction of the NDIS that this Bill enacts, is producing a future in which I have no confidence that there will be a safety net beneath my son when I am no longer here to be it. This is not an abstract policy concern for me. It is the central, present fear of my life. A Bill that promises to “secure the NDIS for future generations” must be measured against whether it secures anything for the disabled adults — like my son — who will outlive their primary carers. In its current form, it does not.

During the same period, I sought assessment for my own suspected neurodivergence through the public system. I was seen by a public GP, mental health nurse and psychiatrist who appeared unaware of the changes introduced in the DSM-5 in 2013, which removed the prohibition on diagnosing autism and ADHD as co-occurring conditions. Because my presentation did not match a stereotypical autistic profile — early speech, hyperverbalism — I was told I was lazy and needed to try harder. I was reported to the local mental health unit. I had already disclosed that I was awaiting my own assessment. By failing my son and blaming me, the system failed two vulnerable people in crisis simultaneously.

This failure to recognise post-2013 diagnostic frameworks is not isolated to my own case. It is a frequent and ongoing pattern among practitioners in regional and rural areas, where workforce shortages, limited continuing professional development opportunities, and the absence of specialist supervision mean that clinicians may be working from diagnostic understandings that are more than a decade out of date. For regional and rural neurodivergent people, the consequence is that diagnosis is delayed, denied, or only available through private practitioners in metropolitan centres at significant personal cost. The Bill’s reliance on tighter diagnostic gateways and a new functional capacity assessment will compound this inequity. People in regional communities will be assessed

Page 5 of 16

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 121

against narrower thresholds by a clinical workforce that, in many cases, has not been resourced or required to keep current with the conditions it is being asked to assess.

The social cost of these failures is significant and is rarely captured in policy analysis. In our community, I felt disbelieved — across the school system, across local services, across informal networks. I have come to describe what happened to us as the double bind of neurodivergence in regional Australia: my son was too disabled for the community to accommodate, and I was not disabled enough to be believed. Both of us were ostracised as a result. The Bill, by tightening the threshold of “disabled enough” to count as an NDIS participant while doing nothing to address the public clinical and community capacity to recognise neurodivergence in the first place, will widen this double bind for the next generation of families like ours.

I want to be transparent with the Committee about what this submission represents. I am using NDIS- funded supports to do the work of writing it, because the cognitive, emotional and administrative load of producing a document of this length and complexity is not something I could carry alone. I am doing this work deliberately, on behalf of the next generation of disabled people — participants and the providers who support them. I receive no payment for it. I am making this clear because it speaks to what NDIS-funded supports are actually for, and what the Bill misunderstands about them. They are not transactional services that produce measurable units of output. They are the scaffolding that makes it possible for disabled people to participate in civic life — including, as I am doing tonight, in the parliamentary process.

I would also ask the Committee to consider what the material conditions of my life look like, because they are relevant to who the NDIS exists to serve and who is being asked to absorb the cost of its contraction. I have, on paper, considerable early intellectual potential. By some measures, that potential might be said to be the measure of my worth. In practice, I live in social housing. I have no holidays, no sick leave, and no superannuation. As a recipient of the carer payment, I live below the poverty line. I am currently struggling to keep my car roadworthy and registered. I have justified staying at home as a way of keeping money in my pocket — but the truth that has become harder to ignore is that, as much as society frightens and traumatises me, the staying-at-home is also a function of how disabled people and their carers are positioned in Australian life: out of sight, out of public space, out of the everyday view of the more privileged Australians for whom these policies appear to be designed. We are, in effect, expected to live our lives in secret, so that the public is not inconvenienced by the reality of what disability and caring actually cost.

This is what the Bill, in its current framing, will entrench. It speaks of “securing” the scheme as though disabled people and their families are a fiscal problem to be managed rather than citizens entitled to live equally alongside everyone else. A scheme that protects itself by tightening eligibility, automating decisions, and squeezing the small providers who actually meet complex need is not a scheme that secures the future for disabled people. It is a scheme that secures the comfort of those who would prefer not to see them.

I was eventually diagnosed in 2023/24 by a private practice of neurodivergent psychologists who correctly identified AuDHD. That diagnosis cost me $2,500 out of pocket, because the public system had not been able to provide it. The same report flagged suspected co-occurring physical conditions that warranted further assessment. Because NDIS access was granted on my primary diagnosis only, those physically debilitating conditions remain undiagnosed and unsupported. My son also has suspected co-occurring physical conditions likely related to his AuDHD that remain unaddressed.

Page 6 of 16

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 121

I describe these experiences not to litigate them in this forum, but because they are directly relevant to what the Bill proposes. A scheme that legislates compliance-based assessment, single-diagnosis pathways, narrower eligibility, and an assumption of clinical competence the public system has not demonstrated, will replicate this harm at scale.

My standing to make this submission rests on:

• First-person experience of growing up and entering adulthood without identification, support, or accommodation for neurodevelopmental disability — the precise outcome the NDIS was designed to prevent for those who came after me.

• First-person experience of being failed by both the disability support system (through compliance-based therapy delivered by clinicians unequipped to recognise burnout) and the public clinical system (through outdated diagnostic frameworks and the resulting misattribution of disability to personal failing).

• Lived experience of the cognitive and executive function load that bureaucratic systems place on neurodivergent adults, and of the cumulative cost of carrying that load privately, without scheme support.

• Lived experience of regional service realities on the Mid North Coast — both in Port Macquarie and previously in Kempsey — including the limited availability of clinicians qualified to work with adult neurodivergence and the additional time, expense, and effort that accessing competent care entails.

• Ongoing public advocacy on disability and neurodivergence in my own community.

I make this submission in a personal capacity. I consent to it being published in full under my name.

The 2026/27 Budget and the Bill: context

The Bill before this Committee was introduced by Minister Butler on 14 May 2026 to give legislative effect to NDIS-related measures announced in the 2026/27 Federal Budget, handed down on 12 May 2026. For the Committee’s convenience, I set out below the key Budget measures the Bill is intended to enable:

• A projected reduction of $37.8 billion in NDIS expenditure growth over four years (2026-27 to 2029-30) compared to the NDIS Actuary’s projections. While the scheme continues to grow in absolute terms, this represents the single largest savings measure in the Budget.

• $2 billion to establish the Thriving Kids program as part of a $5 billion Foundational Supports commitment to be matched by the states and territories. Thriving Kids is targeted at children aged 8 and under with mild-to-moderate developmental delay or autism.

• A stated target to reduce NDIS participant numbers from approximately 760,000 to 600,000 by 2030 — a reduction of roughly 160,000 people.

• $3.3 million in 2026-27 for a Technical Advisory Group to design a new functional capacity assessment tool and advise on NDIS eligibility.

• $358.5 million for a new digital payment system, $280 million to continue the Fraud Fusion Taskforce, and $182.6 million for mandatory registration of high-risk providers from July 2027.

• No increase to the Disability Support Pension, no disability-specific cost-of-living relief, and no new investment in independent disability advocacy.

Page 7 of 16

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 121

The Bill itself contains five schedules. Schedule 1 sets out the changes to scheme access and sustainability, including new statutory definitions of “substantially reduced functional capacity” and “permanence,” and the framework for a new support needs assessment process. Schedule 2 addresses fraud, integrity and plan management, including the deed-of-arrangement regime, changes to claiming timeframes, and updates to the definition of “NDIS provider.” Together, these schedules provide the legislative mechanism through which the $37.8 billion in projected savings will be realised. The Bill and the Budget cannot be sensibly separated, and my submission addresses both.

Substantive concerns with the Bill and the 2026/27 Budget settings

1. Extended record-keeping obligations and the criminalisation of administrative error

The proposed seven-year retention obligation for providers, three years for participants, and five years for other claimants — backed by civil penalties and debt recovery powers — fundamentally misunderstands the population the NDIS serves.

People with AuDHD, intellectual disability, acquired brain injury, psychosocial disability, and many other relevant cohorts experience documented difficulties with sustained organisation, paperwork management, and longitudinal record-keeping. These are not character flaws or signs of dishonest intent; they are core features of the disabilities the NDIS exists to support. A framework that treats a missing receipt from 2027 as grounds for a 2034 debt notice does not improve integrity. It creates a trap that will preferentially catch the people least equipped to defend themselves.

Speaking for myself as a late-diagnosed AuDHD adult: the administrative load of identification, assessment, evidence gathering, and report retention is already substantial for neurodivergent adults navigating existing systems. Layering on a seven-year retention framework backed by civil penalties is not a refinement of administrative practice. It is the construction of an enforcement architecture that the population least equipped to live within it will be required to do so anyway. Many neurodivergent adults will reasonably choose to avoid that risk by not engaging with the scheme — replicating, for the next generation, the very outcome the NDIS Act was meant to address.

2. Reduction of the claim period from two years to 90 days

The proposed reduction of the claim period from two years to 90 days will disproportionately harm:

• Participants experiencing hospitalisation, mental health crises, family violence, or housing instability — circumstances in which paperwork is rationally deprioritised.

• Regional and remote participants reliant on providers whose invoicing systems are slower or less digitised than metropolitan operators.

• Self-managed participants and family carers managing complex household and caregiving demands alongside NDIS administration.

A 90-day window is not a fraud control. It is a denial-of-access mechanism dressed as one. Fraud is identified through pattern analysis and audit, not by closing claim windows on legitimate users of the scheme.

3. Ministerial determination of maximum payable amounts

The proposed power for the Minister to determine maximum payable amounts (s 45C) shifts the NDIS from a person-centred scheme toward a controlled market model. The risks identified in

Page 8 of 16

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 121

independent analysis — reduced provider viability, downward pressure on workforce pay, service withdrawal from regional and remote areas — are not hypothetical for residents of Port Macquarie.

Local participants already face limited choice in allied health, behaviour support, and complex assessment services. Capped pricing without robust regional loading will accelerate the loss of providers willing to travel, take on complex clients, or maintain regional offices. The participants most affected will be those whose support needs are highest and least standardised.

4. Automation of administrative decision-making

The proposed Division 5 (sections 59B–59E), enabling automation of decisions under sections 33, 45, 45A, and 45C, is a significant constitutional and human rights concern. The express statement that failure to comply with safeguards does not affect the validity of an administrative action is particularly troubling. It signals that procedural fairness is being treated as optional rather than fundamental.

Automated decision-making in welfare administration has a documented history of harm in Australia, most notably the Robodebt scheme. The Royal Commission into that scheme made clear findings about the dangers of algorithmic decision-making applied to vulnerable populations without adequate human oversight, transparency, or review rights. Embedding similar architecture in the NDIS, against a population whose disabilities by definition include difficulty navigating bureaucratic systems, is a foreseeable harm.

Participants with neurodevelopmental disability already struggle to understand and respond to NDIA correspondence. An automated rejection of a claim, with limited or formulaic reasoning, may simply not be appealable in practice for a participant who cannot independently parse the notice, identify the deadline, or marshal the evidence to challenge it within the prescribed window. The protections that should exist for this population — clear reasoning, accessible language, automatic human review on request — are not built into the proposed Division 5.

5. Formula-based funding, the new functional capacity assessment, and the participant reduction target

The Bill (Schedule 1) introduces new statutory definitions of “substantially reduced functional capacity” and “permanence,” and provides for a new support needs assessment process and budget method. Funding amounts may be set with reference to standardised assessment tools rather than to the actual cost of supports. This is incompatible with the reasonable and necessary standard at the heart of the NDIS Act 2013. The 2026/27 Budget funds a Technical Advisory Group specifically to design the new functional capacity assessment tool. The government has also stated a target to reduce participant numbers from approximately 760,000 to 600,000 by 2030.

Taken together, these signal that eligibility narrowing is not a possible side-effect of reform but its intended mechanism. A new assessment tool, designed to deliver a 160,000-person reduction, will inevitably be calibrated to exclude rather than to identify need.

Co-occurring presentations — AuDHD, dyspraxia and DCD, sensory and processing differences, psychosocial overlay — rarely produce clean scores on standardised instruments. People with these presentations often appear less impaired than they are because they have spent decades developing exhausting and unsustainable coping strategies, frequently without recognition that this

Page 9 of 16

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 121

is what they have been doing. A funding formula that reads those strategies as evidence of low need will systematically underfund precisely the people who most need flexible, individualised supports.

This is the part of the package that I can speak to most directly from my own life. Late-diagnosed AuDHD adults arrive at any assessment carrying years of compensatory effort that masks the underlying disability. Standardised tools are poorly calibrated to detect this. A scheme that legislates an assessment-driven funding model, with a target reduction of 160,000 participants built into its design, will close off the same access pathway that I did not have growing up.

It is also worth noting that many late-diagnosed adults, having been failed by the public clinical system, have paid out of pocket for their diagnoses. In my own case, I paid $2,500 for the private assessment that correctly identified AuDHD after the public system did not. A Bill that narrows eligibility, or that allows a new functional capacity assessment to override an existing valid clinical diagnosis, effectively retrospectively devalues diagnoses that participants have already paid for because the public system failed to provide them. That is a perpetuation of the very harm that produced the late-diagnosed cohort in the first place.

A related concern is the Bill’s reliance on single-primary-diagnosis pathways. Neurodivergent people commonly present with co-occurring physical and medical conditions — chronic pain, hypermobility, autonomic dysfunction, gastrointestinal conditions, and others — which are frequently under- investigated and under-supported. When NDIS access is granted on the basis of a primary diagnosis only, those co-occurring conditions remain undiagnosed and unsupported. This is my own situation, and my son’s. The Bill’s structural reliance on tighter, narrower diagnostic gateways will worsen this.

I would also urge the Committee to consider a related concern about how supports themselves are framed. NDIS planning increasingly relies on compliance-based goal structures in which a participant is expected to demonstrate progress toward predetermined outcomes within audit-friendly timeframes. For neurodivergent participants, useful support is rarely produced this way. It is produced by understanding, accommodation, and working with how a person actually functions — including fluctuating capacity, sensory needs, and non-linear progress. As compliance burdens intensify under the reform package, this mismatch will deepen, and the supports that are funded will increasingly fail the people they are funded for.

6. The Thriving Kids program: not co-designed, not sufficient, and a pipeline to the next generation of late-diagnosed adults

The Thriving Kids program — the centrepiece of the Foundational Supports response that is intended to absorb participants leaving the NDIS — is targeted at children aged 8 and under with mild-to- moderate developmental delay or autism. There is, at present, no equivalent Foundational Supports framework for adolescents, adults, or older people with disability.

Thriving Kids has not been adequately co-designed with neurodivergent people. The program has been developed and announced largely as a fiscal response to the cost growth of the NDIS, rather than as a service model designed in genuine partnership with the people it will serve and their families. Disability peak bodies, autistic-led organisations, and advocacy groups have raised significant concerns about the lack of meaningful co-design, the absence of detail about what the supports will actually consist of, and the assumption that group-based parenting programs and upskilled mainstream workers can substitute for the individualised allied health supports children with complex needs currently receive through the NDIS.

Page 10 of 16

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 121

The predictable consequence is that many neurodivergent children — particularly those whose presentations do not fit narrow stereotypes, those with co-occurring conditions, and those whose families cannot privately fund the gap — will not receive adequate therapies or supports under Thriving Kids. They will be returned to overstretched public systems that, as my own experience demonstrates, are often clinically out of date and operate on diagnostic and therapeutic frameworks that pathologise neurodivergent traits as personality failings. The recourse to those public systems is precisely the situation the NDIS was created in 2013 to address.

The intergenerational harm this will cause is foreseeable. Children whose neurodivergence is unrecognised, mis-supported, or pathologised in childhood become the next generation of late- diagnosed adults — adults who, like me, will arrive at adulthood carrying the cumulative trauma of having had their neurodivergent traits treated as aberrant personality. They will then turn to a scheme that, under the framework this Bill establishes, will be even harder to access than it is today. The Bill therefore manufactures the very cohort it will simultaneously exclude.

This also places an unnecessary and growing burden on overstretched public health, mental health, education and justice systems — burden that the establishment of the NDIS was specifically intended to reduce. Shifting disability support back into these systems does not save money in any honest whole-of-government accounting; it shifts the cost elsewhere and, in the process, fragments care.

For adults — including late-diagnosed adults like myself, and the cohort of younger adults coming through after them — the practical effect is exposure to a tightening eligibility framework with no Commonwealth-funded fallback. If the new functional capacity assessment determines that an adult with co-occurring neurodevelopmental presentations does not meet the narrower threshold, there is no equivalent of Thriving Kids waiting on the other side. The participant is simply outside the scheme, reliant on whatever the relevant state government chooses to fund — which, in NSW, has historically been thin for adult neurodevelopmental disability.

This life-stage gap is not addressed anywhere in the Budget papers or the Bill’s explanatory materials I have been able to find. It is, in my view, the single most serious omission in the reform package.

7. Periodic and block-style funding is unsuitable for disability with fluctuating needs

Although the Bill’s planning provisions and the Department’s accompanying materials present structured needs assessment and periodic budget setting as more equitable and consistent, this framing assumes a stable underlying support need that can be averaged across a planning period. For many people with disability — including those with chronic illness, mental health overlay, episodic conditions, post-surgical recovery needs, and the fluctuating capacity that is characteristic of many neurodevelopmental presentations — this assumption is incorrect.

Need is not stable. A participant who is averaging well over a year may, within that same year, require significantly more support around a hospital admission, a flare of a co-occurring condition, a bereavement, a housing transition, or a period of acute mental health distress. Periodic or block- style budgets that are calibrated to an average leave participants unfunded at precisely the moments they most need support. The flow-on consequences are usually borne by family carers, by the public hospital system through delayed discharge or readmission, or by the participant’s own deteriorating health.

Page 11 of 16

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 121

The Bill should retain explicit, accessible mechanisms for in-period plan variation and emergency uplift in funding that do not require the participant to navigate a lengthy review process while in crisis. These mechanisms should be funded sufficiently that they are usable in practice and not gated behind documentation requirements that participants in crisis cannot reasonably meet.

8. The disability support workforce: casualisation, burnout, and direct harm to participants and carers

The Bill addresses provider pricing and registration but contains no meaningful response to the conditions of the disability support workforce, despite those conditions being directly material to the quality and safety of supports the scheme funds.

Support work is skilled work. It is also widely casualised, often underpaid relative to its actual demands, and frequently delivered by workers who have not received adequate training in the conditions of the participants they support, in trauma-informed practice, or in working with neurodivergent people whose communication, sensory needs, and regulation may differ significantly from a neurotypical baseline. Casualisation means no paid leave, no sick leave, no continuity of employment, and limited ability to access financial products such as mortgages — conditions that produce a workforce in chronic burnout.

The downstream consequences of an overwhelmed workforce fall directly on participants and on family carers. As a single parent and carer, I have had support workers return my son home in a state of panic because they themselves were overwhelmed by the demands of a shift they were inadequately trained or resourced to manage. The flow-on effect on a household that is already stretched thin is significant: the carer absorbs not only the participant’s distress but the worker’s, and is left to repair both.

The Bill’s pricing provisions, including the proposed power for the Minister to determine maximum payable amounts, will exert downward pressure on workforce pay and conditions unless explicitly safeguarded against. Capping provider payments without simultaneously investing in workforce training, permanent employment pathways, and a recognised career trajectory will further degrade the quality of support participants receive, and will continue to transfer hidden cost onto family carers.

9. Plan manager consolidation and reduced choice in regional areas

Schedule 2 of the Bill introduces a deed-of-arrangement regime for registered plan management providers, accompanied by tighter conflict-of-interest rules and governance obligations. While well- intentioned, these provisions will predictably result in market consolidation. Smaller, community- based, and regional plan managers will exit, leaving participants with a narrower choice of larger corporate operators. The Department’s own materials describe the intention to limit the number of registered plan management providers, which makes the consolidation outcome explicit rather than incidental.

This contradicts the choice and control principles of the NDIS Act 2013 and will be felt most sharply in regional centres like Port Macquarie, where local relationships and lived understanding of regional service realities are part of what a good plan manager provides.

What this looks like from where I sit

Page 12 of 16

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 121

The Bill and the Budget settings it implements are described as protecting the future of the NDIS. From where I sit — as a late-diagnosed AuDHD adult who grew up without the scheme, and now watches it contract just as my generation and the one after it begins to be identified — they look like a closing door.

Specifically:

• The new functional capacity assessment, designed to deliver a 160,000-person reduction in participant numbers, will be calibrated to exclude. Adults with co-occurring neurodevelopmental presentations are precisely the cohort whose needs do not fit standardised assessment tools. We present as functioning because we have learned to mask, to compensate, and to absorb the cognitive cost privately. A funding formula that reads those coping strategies as evidence of low need will systematically misclassify us.

• Compliance-based goal frameworks, increasingly central to how NDIS plans are constructed and audited, are a poor fit for neurodivergent participants. I know this from direct experience: compliance-based therapy delivered to my son in 2022 by clinicians who did not understand neurodivergent burnout caused him significant harm and resulted in me being blamed and reported. The Bill embeds the same logic at scale.

• Periodic, formula-driven budgets cannot accommodate the reality of fluctuating need. Hospital admissions, condition flares, and crises happen unpredictably. When the system has no mechanism to respond, the cost is absorbed by carers — usually women, often single parents, frequently neurodivergent themselves — until they too collapse.

• The disability support workforce is already in chronic burnout. Pricing reforms that further compress provider margins, without simultaneous investment in workforce training and permanent employment pathways, will deepen this. As a single parent who has had a panicked, overwhelmed worker return my child home mid-shift, I can speak to the direct downstream cost on a carer who is already at capacity.

• The administrative load of accessing and maintaining a place in the scheme falls hardest on the people whose disability includes executive function, working memory, and procedural follow-through. The reforms increase this load while reducing the human discretion that currently softens it.

• Regional residents on the Mid North Coast already face thin service markets. Capped pricing without robust regional loading, and the predicted consolidation of plan management into larger corporate operators, will narrow choice further.

• For prospective participants — including the cohort of late-identified adults whose access journey is only just beginning — a scheme that is simultaneously tightening eligibility, automating decisions, and offering no Foundational Supports alternative for anyone over the age of 8 is, in practical terms, a scheme that may simply not arrive in time.

I cannot recover the decades I spent without support. What I can do is ask the Committee not to legislate the same outcome for the people coming through behind me.

Recommendations

I respectfully ask the Committee to recommend the following:

11. The Bill should not proceed in its current form. The Committee should recommend that it be withdrawn and substantially redesigned in genuine co-design with people with disability, including people with cognitive, neurodevelopmental, intellectual, and psychosocial disability.

Page 13 of 16

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 121

12. Pause the implementation of the Thriving Kids program until it has been genuinely co- designed with neurodivergent people and their families, with clear, published service models, evidence of clinical safety, and demonstrated capacity to serve children with co-occurring and complex presentations. The program in its current form will fail the children it is intended to support and produce the next generation of late-diagnosed adults.

13. Commit to a Foundational Supports framework for adolescents and adults before any further tightening of NDIS eligibility takes effect. The current package leaves anyone over the age of 8 with no clear Commonwealth-funded alternative if they are removed from or denied access to the scheme.

14. Reverse or substantially redesign the 2026/27 Budget settings affecting the NDIS, so that integrity measures focus on the unregistered provider market and systemic exploitation, rather than transferring compliance burden onto participants.

15. Reject the extended record-retention obligations on participants, or at minimum exempt self-managed participants and provide funded administrative support for participants with cognitive or neurodevelopmental disability.

16. Retain the existing two-year claim period, or extend any reduction with robust hardship and crisis exceptions clearly written into the legislation rather than left to delegated rules.

17. Reject the automation provisions (proposed Division 5) in their current form, and require that any automated decision under the Act be subject to mandatory human review on request, with the safeguard provisions made enforceable rather than declaratory.

18. Require that any maximum payable amount determinations include explicit regional loadings based on independent cost-of-service data, and that determinations be disallowable instruments subject to parliamentary scrutiny.

19. Preserve individualised planning by ensuring that structured needs assessment outputs are advisory rather than determinative, and that participants retain a clear right to argue individual circumstances, including co-occurring conditions not captured in a primary diagnosis.

20. Build in statutory mechanisms for in-period plan variation and emergency uplift so that participants with fluctuating need can access additional support around hospital admissions, condition flares, and crises without navigating a lengthy review process while in distress.

21. Invest in the disability support workforce through funded training (including in trauma- informed practice and working with neurodivergent participants), permanent employment pathways, and a recognised career trajectory. Any pricing reform that puts downward pressure on workforce pay and conditions without these protections will worsen quality and safety for participants and transfer hidden cost onto family carers.

22. Recognise the validity of existing private diagnoses obtained at participant expense where the public clinical system was unable to provide them, and ensure that any new functional capacity assessment does not retrospectively invalidate clinical diagnoses participants have already paid for.

23. Build in explicit safeguards against the new functional capacity assessment penalising service-traumatised participants. Participants and families who have reduced their engagement with funded supports because of prior service-induced harm should not have that reduced utilisation read as evidence of low need. Assessment should be calibrated against circumstance, not against utilisation data.

Page 14 of 16

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 121

24. Make implementation of the 2023 Disability Royal Commission recommendations a precondition for any further structural contraction of the NDIS. Reducing the scheme before the Commission’s recommendations are implemented removes a safety net while the systemic harms the Commission documented remain unaddressed.

25. Substantially increase funding for independent disability advocacy to restore caseloads to recommended levels and reverse the consequences of administrative amalgamation that has reduced advocate availability. The Bill will significantly increase the volume of participants and families needing advocacy support, and the existing system is already over capacity.

26. Protect small, neurodivergent-led, and lived-experience providers from being squeezed out of the market by the combined compliance, registration, pricing and deed-of-arrangement burden the Bill imposes. These providers frequently sustain participants whose needs the mainstream provider market has failed to meet, and their loss would be a direct harm to participants who currently rely on them.

27. Acknowledge that the 15-day submission window for this inquiry was procedurally inadequate given the complexity of the Bill and the capacity constraints of the community most affected, and recommend that any future structural reform of the NDIS be preceded by a genuinely accessible consultation process of meaningful duration, with funded support for participants and their representative organisations to engage.

A note on the submission process itself

Before closing, I respectfully ask the Committee to consider the message that this inquiry’s timeframe sends to the disability community. The Bill was introduced on 14 May 2026. The Senate referred it to this Committee the same day. Submissions close on 29 May 2026. That is a window of approximately 15 days for a Bill of 113 pages that fundamentally restructures the scheme on which hundreds of thousands of disabled Australians and their families depend.

This timeframe is not procedurally fair to the community the Bill most directly affects. The people best placed to comment on its likely consequences are also the people the Bill itself acknowledges face cognitive, executive function, communication, and capacity-related barriers — barriers that are intensified, not reduced, by the administrative load the Bill proposes to impose. Asking that same community to read, comprehend, consult, and respond to 113 pages of complex legislation in 15 days — while simultaneously managing existing disability, existing carer responsibilities, and the distress generated by the Bill itself — places an unreasonable burden on people whose reduced capacity is the very thing the Bill claims to be addressing.

The contrast with the time and resources the government has invested in the Bill’s development is significant. The reforms have been developed over many months by departments with full-time policy staff and dedicated consultancy support. The community is given fifteen days, unfunded, to respond. The procedural inequality is itself a form of exclusion.

The brevity of this window also suggests, on its face, that the priority of the process is to manage how the cost trajectory of the NDIS is presented to the broader electorate, rather than to genuinely engage with the people whose lives the Bill will alter. I do not say this lightly. I say it because the structure of the process speaks for itself, and because it matches the broader pattern visible across the reform package: a focus on financial sustainability framed as protection, with the people the

Page 15 of 16

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 121

scheme exists to serve consulted as an afterthought rather than as the design partners they should have been from the outset.

I respectfully ask the Committee to acknowledge in its report the inadequacy of this submission window for the disability community, and to recommend that any future structural reform of the NDIS be preceded by a genuinely accessible consultation process of meaningful duration, with funded support for participants and their representative organisations to engage.

Closing

The NDIS Act 2013 was a landmark piece of social policy grounded in the principle that people with disability should have choice and control over the supports they need to live ordinary lives. The Bill before this Committee, and the 2026/27 Budget settings it implements, move the scheme in a different direction — toward a controlled, automated, compliance-heavy model that prioritises financial management over the people it was built to serve.

Integrity matters. So does access. So does dignity. A scheme that protects itself by making itself harder to use for the people who need it most has not improved its integrity; it has simply narrowed its commitment.

I would welcome the opportunity to appear before the Committee or to provide further information should it be useful.

Thank you for your consideration.

Yours sincerely,

Pia Kyre

Page 16 of 16