Submission 2683
Submission to the Senate Community Affairs Legislation
Committee
Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for
Future Generations) Bill 2026
Submitter Role: Household carer/support person for multiple NDIS participants
Publication: We consent to publication on a confidential basis with any personal identification removed.
Table of Contents
- About Me and Our Family ……………………………………………………………………………………………………………………… 2
- A Note on Making This Submission ………………………………………………………………………………………………………… 2
- Executive Summary………………………………………………………………………………………………………………………………. 3 Framing………………………………………………………………………………………………………………………………………………. 3
Specific Provisions ……………………………………………………………………………………………………………………………….. 4
Powers and Oversight ………………………………………………………………………………………………………………………….. 4
Summary of Recommendations …………………………………………………………………………………………………………….. 5
- About This Submission ………………………………………………………………………………………………………………………….. 5
- Part A: The Framing ……………………………………………………………………………………………………………………………… 5 Sustainability Is Being Framed Selectively ……………………………………………………………………………………………….. 5
Personal Context That Matters ……………………………………………………………………………………………………………… 6
Economics ………………………………………………………………………………………………………………………………………….. 6
NDIS Growth ……………………………………………………………………………………………………………………………………….. 7
Participants and “Future Generations” …………………………………………………………………………………………………… 7
Financial Sustainability as Unchecked Ministerial Power ………………………………………………………………………….. 7
- Part B: Specific Provisions ……………………………………………………………………………………………………………………… 8 The Use of Ministerial Determinations and Rules …………………………………………………………………………………….. 8
Ministerial Reduction Power and the Removal of Merits Review (s.34A) ……………………………………………………. 9
Functional Capacity Assessment (s.9B) …………………………………………………………………………………………………… 9
“Directly Arising” and the Reversal of the Whole-of-Person Approach (s.34(1)(aa))……………………………………. 11
Evidence Hierarchy and the Veto of Absent Research (s.34(1E)–(1F)) ………………………………………………………. 12
Parental Responsibility Presumption ……………………………………………………………………………………………………. 13
Reassessment Gating and the Underfunding Trap (s.48A) ………………………………………………………………………. 14
Automated Plan Renewal Without Budget Rollover (s.50A) …………………………………………………………………….. 15
- Part C: Future Consultation Priorities ……………………………………………………………………………………………………. 15 Support Coordination: What the Commissioned Model Must Preserve ……………………………………………………. 15
Pricing and the Independent Provider Model ………………………………………………………………………………………… 16
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Recommendation Summary ………………………………………………………………………………………………………………… 17 Appendix A: A Personal Reflection on Sustainability …………………………………………………………………………………… 19
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Submission 2683
- About Me and Our Family I am a father, husband, and carer for my family. My wife and I have two lovely kids, and our family is often described as loving, strongly connected and supportive. I present this submission both for myself and on behalf of my wife and kids (we). We work hard to make the best of things, but our life can be challenging. My beautiful wife is Autistic and lives with lifelong, treatment-resistant major depression and PTSD.
Both of our kids are also Autistic, and all three have to work with PDA as part of their Autism.
Despite challenges in how the NDIS is delivered, we appreciate the support it provides for my wife and children. It has moved us from crisis to a point where things are mostly stable, and it currently gives us hope that, in time, we can slowly build capacity towards a better life. ‘Suspended animation’ comes to mind when trying to explain where we are: not in crisis, but everyone remains in a ‘suspended state’. The ability for any one of us to leave the house is extremely constrained.
We are self-managed with respect to the NDIS. We chose this so we can be active participants in how support is delivered, and because we both have the skills and background to support this decision. Self-management enables us to maintain a stable, highly knowledgeable, integrated team and to utilise funds efficiently, often at reduced cost. An independent Support Coordinator is an important part of our approach as a subject-matter expert with experience tailored to our needs. They support tasks such as identifying and short-listing workers with the specific skills our situation requires — tasks that can otherwise be challenging for us.
I am also Autistic, with Ehlers-Danlos Syndrome, which means I must carefully manage my own capacity as well as support others’ capacities. I’m not a NDIS participant. The whole family is likely to be what is often referred to as twice exceptional, which can certainly produce some deep and interesting ideas and conversations. The household depends on me to continuously engage and scaffold to maintain something akin to equilibrium.
Before things became too difficult for me, just over a decade ago, I worked at a high level in industry focused on mega projects and with government regulators, providing advice on policy, regulatory change and application, environmental matters and stakeholder engagement.
- A Note on Making This Submission People living with disability, and those who care for them, are already carrying more than most. Every task in our day is usually more complicated and more draining than it would be for a non-disabled family. On top of this, we must manage support plans, continuously advocate for ourselves and our loved ones just for basic disability accommodations, coordinate workers and therapists, and navigate a system that demands constant documentation. The unpaid labour on top of the daily demands of managing disability itself. Unless someone has lived experience it is impossible to convey the weight that is carried, or the level of exhaustion that is a constant companion.
Available energy is finite, and the cost of spending it on a Senate submission is real.
Many people who should be heard in this inquiry will not submit. Not because they have nothing to say, but because they have nothing left to say it with - a position we ourselves have often been in. The fifteen day consultation window for a 109 page bill fundamentally changing the NDIS and affecting over 774,000 Australians is not a genuine invitation to participate. It is a process that structurally excludes the people most affected.
We are aware that many in our situation cannot participate. The Committee should weigh that absence, not just the submissions received.
We are submitting this week by drawing on energy that would otherwise be needed for our family. This is not spare capacity but a trade-off we are compelled to make, and the impact will be felt both
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immediately and in the recovery that follows. This is the reality behind every decision we make: whether we can afford to spend limited energy on a task, even when it is important.
We also note that many in the disability community have questioned whether submissions make any difference, whether the outcome is already decided and engagement is theatre. We do not share that view, but we understand it. The short timeframe, the fact that two of the bill’s most significant measures had, by the government’s own admission, received no prior consultation, and the bill’s breadth make that cynicism reasonable. We ask the Committee to take the concerns raised here seriously, including those raised by people who could not find the energy to submit at all.
The proposed legislation reflects limited engagement with lived experience and risks re-introducing a paternalistic model in which government and organisations, rather than individuals, determine what support is “appropriate”. This undermines the choice and control principles that were foundational to the NDIS. While the government has signalled an intention to rebuild Tier 2 supports, early initiatives such as Thriving Kids remain under-resourced and are being positioned primarily as gatekeeping mechanisms rather than genuine alternatives.
An overarching impression of the legislation is flawed, it’s premise over-simplifies what disability is and how people function and how supports help when living with a disability. I cannot separate myself from my disability. I am my disability and my disability is me. Any legislation that does not recognise the complexity and uniqueness of every disabled individual will fail, and will struggle to gain the support of the disability community it purports to support. Legislation designed and drafted with meaningful input from individuals with lived experience will produce better and more sustainable outcomes.
Recommendation 1
Redraft the legislation using qualified individuals representing a range of lived experiences of disability, utilising inputs from quality consultation and input from the disability community on the design of the assessments, tools, criteria, process and definitions and approach contained within the legislation and any accompanying rules.
- Executive Summary This submission is made by a household carer and support person for multiple NDIS participants, on behalf of himself and his family. All family members are Autistic; three have PDA profiles; his wife has treatment-resistant major depression and PTSD. The family is self-managed, severely capacity constrained, and deeply dependent on the NDIS to maintain basic function.
We support the principle that the NDIS must be holistically sustainable over the long term and changes to the NDIS are required. We do not support this bill in its current form, or the framing that surrounds it. Our concerns fall into three areas:
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The bill’s foundational framing is not well supported by evidence.
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Several specific provisions will produce direct harm for participants with complex, invisible or multiple interacting disabilities.
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The powers created for future use are inadequately constrained.
Framing
The bill frames NDIS expenditure growth as uniquely unsustainable while applying no such framing to defence spending, fossil fuel subsidies or aged care — all of which grow faster than inflation. It then
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embeds this selective framing into law by inserting “financial sustainability” into the Act’s objects, elevating budget protection above assessed need.
The bill ignores the economic multiplier of NDIS expenditure (Per Capita, 2021: 2.25×) and contains no modelling of displaced costs to health, mental health, aged care and income support systems when NDIS support is reduced, let alone the broader social cost. NDIS growth projections are benchmarked against 2011 Productivity Commission figures that predate a substantially improved understanding of invisible and psychosocial disability. This framing does not hold up to scrutiny.
Specific Provisions
Several provisions will produce foreseeable harm for participants with complex needs:
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“Financial sustainability” as operative criterion (ss.17B, 32K, 34A, 45C): Budget protection is not just a policy objective in this bill — it is embedded as an undefined, subjective decision making criterion across multiple operative provisions, making it a lawful basis to reduce or refuse individual support at the planning and pricing level. Whole-of-government displaced costs are not accounted for in any of these provisions.
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s.34(1)(aa) (“Directly arising”): Reinstating a direct-cause test ignores clinical reality for participants with multiple interacting diagnoses, where no single impairment can be identified as the sole cause of a support need.
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s.34(1E)–(1F) (Evidence hierarchy): Placing peer-reviewed generalisable research above lived experience and treating practitioner evidence — and allowing absence of research to veto funding — disadvantages participants with rare or highly individualised disability profiles, and would have prevented funding of many currently accepted support approaches.
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s.34(1H) (Parental responsibility presumption): The presumption does not account for parental disability, households with multiple disabled members, or the substantially greater time, energy and frequency demands of caring for a disabled child. Applied to our household, the presumption would be factually wrong.
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s.34A (Ministerial reduction power): The ability to reduce support funding across whole categories by legislative instrument, with no individual merits review and only a “have regard to” safety obligation, provides no meaningful protection for participants whose support structures are integrated and interdependent.
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S.48A) (Reassessment gating and removal of merits review): The tightened reassessment criteria provide no remedy for plans underfunded from the outset — the gating mechanism requires a change in functional capacity, not a correction of an inaccurate assessment. Combined with prior legislative changes, meaningful merits review has been effectively removed; the only available remedy for a wrong decision is a repeat of the same flawed process.
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s.50A (Automated plan renewal): No rollover of unspent funds penalises episodic disability patterns and creates perverse end-of-plan spending incentives that the bill elsewhere seeks to reduce.
Powers and Oversight
The extensive use of Ministerial determinations and Rules — setting eligibility thresholds, assessment tools and funding levels outside primary legislation — concentrates significant power with minimal parliamentary oversight. This is a more expansive delegation than is typical for Commonwealth social legislation and should concern the Committee on principle.
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Summary of Recommendations
This submission makes fourteen recommendations. A reference summary appears in Section 5. Key asks are:
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Redraft the legislation with genuine lived-experience co-design (Rec 1).
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Commission whole-of-government economic and displaced-cost modelling before eligibility tightening (Rec 2).
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Replace “financial sustainability” with a five-element definition of “Sustainability of the NDIS” (Rec 3).
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Require primary legislation for all eligibility and funding changes (Rec 5).
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Amend s.9B to mandate individualised, expert-led, context-aware assessment (Rec 8).
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Restore the whole-of-person approach in s.34(1)(aa) (Rec 9).
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Co-equalise lived experience and treating practitioner evidence in the s.34(1E) hierarchy (Rec 10).
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Ensure the parental responsibility presumption in s.34(1H) reflects actual carer capacity and household complexity (Recs 11–12).
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Conduct a comprehensive review of participant review and appeal rights across all NDIS decisions and amend legislation to reinstate substantive merits review (Rec 13)
- About This Submission We support the principle that the NDIS must be holistically sustainable over the long term. We do not support this bill in its current form, or the framing that surrounds it. Our concerns fall into three areas: the bill’s foundational framing is not well supported by evidence; several specific provisions will produce direct harm for participants with complex, invisible or multiple interacting disabilities; and the powers created for future use are inadequately constrained.
Although I have regulatory knowledge, neither the timeframe provided for comment nor my current capacity is conducive to a full and thorough review of the proposed legislation, let alone its full implications and interactions with other legislation and rules. An omission of discussion of aspects of the proposed should not be taken as support, merely that I chose not to focus on that section in the hope other could address it better. There may be errors in interpretation or understanding, but I believe the intent and substance of these comments should still stand. Given my capacity, I have used AI to support preparation of this document — to cross-check accuracy, improve readability, grammar, formatting and summarise some external information. The submission is in my own words and represents my own views and experiences, including those of my family.
- Part A: The Framing
Sustainability Is Being Framed Selectively
The bill treats NDIS growth as uniquely unsustainable and uses future generations as the framing for that argument. That framing is not applied consistently across the budget. Defence spending is projected to rise from $53 billion to more than $100 billion within a decade — growth far above the NDIS — yet this is framed as necessary investment. Fossil fuel subsidies total $16.3 billion in 2025–26 and grew by 9.4% in a year; NDIS expenditure grew by 7.6%. The fuel tax credit scheme alone costs over $10 billion annually and is uncapped and unconditional. Hospital funding, aged care and defence procurement all grow faster than inflation without being labelled crises. Nor is there any move to implement a gas export or windfall profit tax. Yet disability support is singled out.
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This is not an argument about defence or energy policy. It is evidence that “unsustainable growth” is a political label applied selectively — and in this bill, applied almost exclusively to disabled people.
The bill then embeds this selective framing into law. It inserts “financial sustainability” into the Act’s objects for the first time and requires the CEO to weigh scheme finances in every planning decision. This elevates budget protection above assessed need. That is a policy choice, not a neutral administrative update.
This becomes a discretionary power embedded in the legislation provided to the minister of the day.
Personal Context That Matters
Many people talk about “NDIS sustainability” as if it is only about spending. My story shows a different side of sustainability — the long-term cost when disabled people go through life unsupported.
I invite and implore you to read Appendix A, which gives a very personal perspective on what lack of disability support looks like, even when life has given you certain advantages.
I was the quiet kid who coped well enough to be overlooked, even though I struggled. I did well academically but well below my potential, excelled professionally, and paid high taxes. But without understanding, support or diagnosis, the cracks widened. By my late 30s I crashed completely — from a high-income contributor to someone who now relies on government support, Medicare, psychology and ongoing medical care. The combination of disability and conditions like Ehlers-Danlos Syndrome is compounding, not additive, nor neatly attributable to a single impairment.
This is not unusual. It is a pattern repeated across late-identified disabled adults and across generations. My mother lived the same trajectory 25 years earlier. Many families do.
The current debate counts NDIS dollars but not the far greater whole-of-government cost when people fall through the cracks: lost productivity, lost tax revenue, increased medical and psychological care, and long-term income support. Sustainability is not just about reducing NDIS spending. It is about preventing preventable decline.
If we want a truly sustainable NDIS, we need to understand what happens when support comes too late — not just for individuals, but for families, communities and the public purse.
Economics
There is also a straightforward economic argument the bill ignores. Per Capita’s False Economy analysis (2021) found a conservative economic multiplier for NDIS expenditure of 2.25, meaning every dollar invested generates $2.25 in economic activity. On that basis, $1 billion in NDIS cuts produces a $2.25 billion reduction in economic activity and approximately 10,200 job losses. Cuts do not simply reduce government outgoings. They remove spending that flows through communities, particularly in regional areas, and disproportionately affects women, who make up the majority of the care workforce.
There are also costs that arise when NDIS funding is reduced: the losses described above when people fall through the cracks — lost productivity, lost tax revenue, increased medical and psychological care, and long-term income support. Based on the economic multiplier, each cut of $1 billion in funding would imply approximately $690 million in lost tax revenue (taxation being 30.2% of GDP per Taxation Revenue, Australia 2024–25, Australian Bureau of Statistics).
The bill’s Explanatory Memorandum contains no modelling of broader benefits lost or costs displaced — the costs that shift to emergency departments, state mental health systems, aged care and unpaid family carers when NDIS support is reduced or withdrawn.
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NDIS Growth
NDIS growth is being assessed against the 2011 Productivity Commission projections as a basis for defining economic sustainability. It is wholly unrealistic to base a 2026 policy decision on projections made 15 years ago. Our improved knowledge, understanding, societal expectations and diagnostic practice have all moved significantly in that time. We have a better understanding of the impact and manifestations of invisible disabilities such as psychosocial disability and Autism. The lower numbers in the 2011 projection are not an indication of current over-support; they represent a gap in understanding that has since been partially corrected.
Consider what it would look like if each federal budget were constrained by projections from 15 years in the past. Not correcting budgets for 15 years of change would be seen as the epitome of poor fiscal management. Cancer case numbers in Australia increased by 88% between 2000 and 2023 (Australia’s Health 2024 in Brief, Australian Institute of Health and Welfare). No one would propose funding cancer treatment on 2000 data. The same logic applies to the disability community.
Participants and “Future Generations”
A genuinely sustainable NDIS also requires sustainable participants. A person whose support is cut below the level needed to maintain function is not sustainable. Reducing “sustainability” to the financial sustainability of the scheme alone is not a reasonable use of the term.
Financial Sustainability as Unchecked Ministerial Power
The practical consequence of embedding “financial sustainability” as an operative criterion across the bill — in ss.17B, 32K, 34A, 45C and elsewhere — is that it confers on the Minister of the day an effectively arbitrary power to cut, curtail or dismantle the NDIS on ideological or political grounds, provided a financial sustainability argument can be constructed. There is no definition of financial sustainability in the bill that would constrain how that argument is framed. At the extreme, this mechanism could be used to functionally cease the operation of the NDIS without parliamentary oversight: eligibility thresholds set by instrument, support levels reduced by determination, and funding categories hollowed out by rules, each individually defensible as a financial sustainability measure and collectively amounting to the end of the scheme. The only constraint on the s.34A reduction power is that the Minister must have regard to participant safety, a “have regard to” obligation that requires no public document, no demonstrated finding, and no parliamentary scrutiny. A determination need not be disallowable. The disability community is being asked to accept that this power will never be misused. That is not a sufficient safeguard for legislation of this consequence.
Recommendation 2
Conduct economic modelling to identify the economic benefits of the NDIS and the impacts of this legislation, including whole-of-government displaced-cost modelling and GDP impacts, before any eligibility tightening.
Recommendation 3
Replace “financial sustainability” in the bill’s objects and in all operative provisions including ss.17B, 32K, 34A and 45C with “sustainability of the NDIS,” defined to encompass:
a) the scheme’s long term fiscal position; b) its net impact on the broader economy and GDP, including through workforce participation, job creation for participants and in the care economy, and reduced long-term income support dependency;
c) whole-of-government net cost, accounting for costs displaced to health, mental health, aged care, housing, child protection and justice systems when NDIS support is reduced or withdrawn;
d) the long-term functional capacity of participants and their informal support networks; and P a g e 7 | 20
Submission 2683
e) intergenerational costs, recognising that unsupported disability across a lifespan creates compounding costs to government that exceed the cost of early and sustained support. A decision made sustainability grounds must have regard to all five elements. So a decision that achieves short-term savings under (a) while producing adverse outcomes under any of (b) through (e) does not constitute a sustainable decision within the meaning of this Act. Ministerial determination made on sustainability grounds must be publicly available, tabled in Parliament, and subject to disallowance.
Recommendation 4
Commission new research-based modelling to produce projections of likely participants and their likely plan budget needs based on current knowledge, data, trends and an assessment of what reasonable and necessary support needs are for the disabled population. This should be updated periodically and no later than every five years, providing a solid basis for future planning.
- Part B: Specific Provisions
The Use of Ministerial Determinations and Rules
Rules and Determinations are a key mechanism within this and other NDIS legislation. The degree to which the proposed legislation can be modified by NDIS Rules and Determinations is significant and broader than is typical for Commonwealth legislation. This allows Ministers to change who gets NDIS support (Schedule 1, Parts 8 and 9) and how much funding people receive (Schedule 1, Part 4; Schedule 3) by signing an instrument, without returning to Parliament. The proposed legislation can produce significantly different outcomes depending on how the rules are set. I urge the Committee, and our parliamentary representatives as a whole, to consider the philosophical acceptability of delegating this degree of power.
This is fundamentally different from, say, the Social Security Legislation, where the main parameters are set within the legislation itself.
I have discussed some of the specifics of how various aspects of the legislation impact our family, but it is not possible to do so against unwritten rules. Those rules will, in all likelihood, be what impacts us most, as they will determine:
- How NDIS eligibility is assessed (functional assessment)
- What tools are used for assessment
- What threshold of disability meets NDIS eligibility
- How “reasonable and necessary” is defined and at what level support is set
- How budgets in a plan are set In essence, this legislation sets the majority of the determinants of who accesses the NDIS and what support an individual is eligible for at the discretion of the Minister. This feels fundamentally wrong and is where the design starts to feel very paternalistic. It minimises oversight and the ability to review decisions.
At the extreme, a future Minister could use these mechanisms to effectively shut down the NDIS by setting functional capacity thresholds so high that no individual (or very few) are eligible, or by setting all plans to negligible funding levels through rules around support.
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Recommendation 5
Require that all decisions affecting NDIS eligibility and funding levels be made through primary legislation subject to reasonable stakeholder consultation and full parliamentary scrutiny, with mandatory advance notice to affected participants before any changes take effect.
Ministerial Reduction Power and the Removal of Merits Review (s.34A)
New s.34A allows the Minister to reduce the funding component for any group of supports across all affected plans by legislative instrument. The Minister must consider participant safety — as a “have regard to” obligation only, not an enforceable floor. Reductions are expressly not subject to merits review.
The announced application of this power — a 50% reduction to social and community participation funding from 1 October 2026 — is significant for any participant, but for people with complex needs the effect is not simply reduced hours in the community. Social and community participation funding often forms part of an integrated support structure. For a person requiring continuous supervision due to safety-relevant disability-related behaviours, a percentage reduction does not reduce the need for supervision. It creates a gap in coverage. A 10% cut to Capacity Building Daily life is no different. Particularly as both occur after an assessment of reasonable and necessary has occurred.
The “have regard to safety” obligation provides no protection in practice. A duty to have regard does not require the Minister to act on safety findings, or to produce any public document demonstrating how safety was weighed. A reduction applied uniformly across all individual plans — regardless of individual risk — cannot be characterised as safe, particularly after supports have already been determined as reasonable and necessary for each person. There is no mechanism by which an affected participant can challenge the determination. The rationale for excluding merits review — that legislative instruments of general application are not suitable for merits review — does not account for individual impact. A participant whose plan is functionally unworkable after a percentage reduction has no recourse.
Recommendation 6
s.34A should include a requirement for prior public consultation and a published impact statement — including demonstration of meeting the requirements of “Sustainability of the NDIS” as defined in Recommendation 3 — before any determination is made. Individual merits review must be available where a participant can demonstrate a materially adverse change to their support structure as a result of the determination.
Recommendation 7
Individual plans be subject to a risk assessment before application of any s.34A determination, with s.34A either not applied or moderated based on the outcome of the risk assessment to ensure participant safety.
Functional Capacity Assessment (s.9B)
The definition of functional capacity is a highly theoretical construct. In particular, the requirement to assess capacity “in a context that excludes, as far as possible, the impact of the person’s environmental and personal circumstances” is entirely impractical. As a person with a disability, I can tell you that my level of function — and therefore my support needs — are so entwined with my environmental and personal circumstances that they cannot be separated. Disability is a fundamental component of who I am and who each of my family members are, and how we interact and
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participate. The level of support we need is very much a function of both environment and personal circumstances.
This points to a core problem with determining NDIS access and support levels through strict definitions, metrics and assessments of functional capacity. No two people with a disability present the same. Differences can appear subtle on the surface yet reflect significantly different support needs. The premise that a single approach, assessment or tool can determine these matters in an interview or even a series of assessments is fundamentally flawed. If it were feasible, it would already exist and be widely accepted. The sheer fact that it does not — and that we have multiple specialist professions involved in the diagnosis, treatment and support of various disabilities — speaks to the difficulty and, in practice, the impossibility of standardised assessment.
I understand the administrative appeal of such a tool, and the idea that it could improve equity in distributing supports. But disability does not fit neatly into boxes. We are all unique and individual. We all have different needs and wants, as is our fundamental right as humans. All of this makes standardised tools, assessments and criteria structurally prone to failure.
This is why therapists within the same profession specialise in particular areas of disability. I do not take my Autistic children to an OT who specialises in adult physical therapy, nor my wife to one who focuses on children.
For Autistic people — and more broadly for anyone whose disability profile is characterised by strong masking — this definition, and the tools and assessments that will be developed under the Rules and Ministerial determinations, creates a structural problem. Masking is the developed, often unconscious, suppression of disability-related traits and needs in order to appear functional, a coping mechanism that misleads assessment in the short term and carries a significant medium to long-term functional cost as the sustained effort of suppression erodes capacity over time. Self-report instruments, or those administered by someone without ongoing knowledge of the participant, will systematically understate support needs. A person with a strong masking presentation will often answer questions about their functional capacity based on what they believe they should be able to do, or on societal expectations, not what they can actually sustain. The gap between those two things is often large, and often invisible to everyone except the people who provide daily support and therapy.
The practical result is that an assessment conducted without observation, by someone unfamiliar with masking presentation, will produce a functional capacity score that does not reflect the person’s actual support needs. Plans built on that score will be underfunded. The reassessment pathway that would correct this has been simultaneously tightened by the bill to require a “significant and ongoing change” in functional capacity before a request can proceed. A plan that was underfunded from the start does not represent a change — it was always wrong.
Masking is something felt acutely in our family. Every member, including myself, will almost always say we are okay, even when barely functioning. The very nature of our Autism, as we experience it, can mean that indicators of reduced function are not identifiable even to ourselves — and are masked in how we present to others. This produces repeated patterns of pushing well beyond our limits, followed by complete collapse. If we cannot easily identify our own limits and support needs, how can an assessment tool determine our level of function?
This is precisely why accurate identification of our support needs depends on therapists and specialists who know us over time — people who can observe the gap between how we present and how we actually function. No assessment tool administered by someone unfamiliar with our family could replicate that.
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In summary:
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Disability is context-dependent, not context-free.
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No standardised tool can capture the fluctuating, masked and highly individual nature of disability.
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Autism, psychosocial disability and connective-tissue disorders such as EDS are routinely under-reported in structured assessments.
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Masking produces systematically understated support needs, particularly when assessed by someone unfamiliar with the person.
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A single interview or automated tool cannot detect the collapse-and-burnout cycles common in Autistic adults and children.
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The bill tightens reassessment pathways, meaning an initially wrong assessment becomes locked in with no remedy.
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This creates a structural risk of chronic underfunding, deteriorating function and increased whole-of-government costs.
Recommendation 8
That Section 9B be amended to explicitly reject automated, standardised, or point-in-time assessment tools as the primary determinator of functional capacity. Instead, the legislation and associated Ministerial Rules must mandate an individualised, holistic assessment model that is context-dependent, expert-led, and explicitly accounts for masking and environmental intersection, and incorporates evidence from experts who work with the participant.
“Directly Arising” and the Reversal of the Whole-of-Person Approach (s.34(1)(aa))
The bill inserts the word “directly” into s.34(1)(aa), requiring that supports be necessary to address needs arising directly from an eligible impairment. This reverses the Federal Court’s decision in Eastham (2026), which held that supports must be funded even where the need has multiple causes, provided one cause is the eligible impairment.
For people with multiple interacting diagnoses — where, for example, a depressive episode is both triggered by and expressed through autistic burnout, which is modulated by trauma responses, which in turn interact with demand avoidance — there is no clinically meaningful way to assign a single direct cause to a support need. These conditions do not operate independently. They form a picture in which the impairments are mutually reinforcing and constantly interacting.
These conditions can further interact with physical disabilities, chronic conditions or even transient illness in ways that are compounding rather than additive. The well-known relationship between stress and the aggravation of physical conditions is one example.
The “directly arising” test demands that participants and planners perform an analytical separation that clinical reality does not permit. A delegate, an automated system, or even a team of highly skilled specialists applying this test to a complex participant profile will produce arbitrary outcomes determined by which impairment happens to be deemed eligible.
The Explanatory Memorandum acknowledges this is a deliberate reversal of Eastham, which it describes as an “unintended expansion.” Whether it was unintended is contested. What is not contested is that the new test will produce practical injustices for participants whose conditions do not present in neat causal chains.
The “directly arising” test is a legislative expression of a fundamental oversimplification — the premise that disability, and the supports it requires, can be disaggregated into neat, attributable components.
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For most people living with complex or multiple disabilities, that premise does not reflect reality. Disability is not a collection of separable impairments with separable support needs. It is a lived whole, and legislation that attempts to treat it otherwise will produce outcomes that are arbitrary, unjust and disconnected from the people it affects.
Recommendation 9
Remove “directly” from s.34(1)(aa) and restore the whole-of-person approach, which is consistent with how disabled people experience disability.
Evidence Hierarchy and the Veto of Absent Research (s.34(1E)–(1F))
The bill introduces a hierarchy for assessing whether supports are “effective and beneficial”: peer reviewed generalisable research must be considered first, then participant-specific evidence, then outcomes from previous plans. Under s.34(1F), the CEO may refuse to fund a support if peer-reviewed research is absent or limited, even where participant-specific evidence supports it.
This hierarchy disadvantages anyone whose effective support model falls outside mainstream research literature. This includes people with rare conditions, people whose combination of diagnoses has no specific research base, and people whose effective support approaches are individualised in ways that cannot be generalised. The deliberate selection of workers for specific expertise in a particular therapeutic approach — not because it is evidence-based in the generalisable sense but because it demonstrably works for this person — is precisely the kind of individualised, choice-led support the NDIS was designed to fund. The new evidence hierarchy provides a mechanism to defund it.
Lived experience of what works, accumulated over years of living with a condition, is not less reliable than a published study on a different population. Clinical experience of treating practitioners who know the participant is not less reliable than a study that did not include them. The bill ranks both below literature reviews.
Research can only progress through testing new ideas. Legislating in the manner prescribed will both limit future research and likely produce sub-optimal or harmful outcomes.
We are acutely aware of this as a family, particularly with respect to PDA. I know of people who have older children with PDA who use behavioural approaches that matched the existing research. Those approaches have directly caused harm and are diametrically opposed to lived experience, which demonstrates the value of a safe nervous system-first approach rather than a focus on behaviour. New research is slowly confirming what lived experience already knows.
Human history is full of research that was later proven wrong. The intent may have been reasonable, but if the research asked the wrong question or measured the wrong outcomes, it readily misleads. ABA therapy was once considered the gold standard for Autism, with its metric being to make Autistic people behave in neurotypical ways. Research has since shown that those approaches caused significant psychological harm.
Elevating peer-reviewed research is an understandable aim. But it represents an over-simplification of reality and a denial of the complex, fluctuating and highly individual nature of disability.
Recommendation 10
Lived experience and treating practitioner evidence must be co-equal with peer-reviewed research in the s.34(1E) hierarchy. Remove s.34(1F) so absence of generalisable research cannot operate as a veto.
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Parental Responsibility Presumption
The bill introduces a legal presumption that parents of disabled children provide “substantial care and support” including supervision, personal care, transport, emotional support and behavioural support (s.34(1H)). Supports cannot be primarily funded to reduce parental burden below what is “reasonably expected of a parent.”
The qualifier “regardless of the child’s disability” appears in s.34(1H)(b) but not in s.34(1H)(a). On the literal text, the full list of care obligations in (1H)(a) applies as a general presumption, not modulated by the child’s disability profile. This would not recognise the complexities of raising a disabled child.
The presumption reflects a naïvety about what supporting a disabled child involves. Caring for a disabled child means that each of the listed activities — supervision, personal care, transport, emotional support and behavioural support — takes more time, significantly more energy and often occurs at greater frequency. The embedded concepts of “substantial” and “reasonable” are subject to interpretation and subsequent definitional modification. Nor does the provision recognise the additional burdens parents of disabled children carry: managing appointments, coordinating supports, paperwork, advocacy, meetings, and the continuous stress that takes its toll.
For our household, we have two children with high disability-related support needs, and my wife has high needs as well. I am also disabled. Even if I were not disabled, my caring load would exceed three full-time jobs. Even with the additional support we receive in the home, I am burnt out and struggling to engage. I am exhausted in a way I could not have imagined. Application of this clause to our children’s plans would be untenable.
A cross-sectional study published in the Journal of Education and Health Promotion evaluated parents of children diagnosed with Autism using the standard DSM-5 PTSD Checklist (PCL-5) (Maabreh, 2025). The study found that parents exhibited significantly high PTSD symptom scores, averaging 42.08 out of 80 on the PCL-5 scale — above the threshold of 31–33 that typically indicates clinically significant PTSD. The toll on parents is not anecdotal; it is measurable and clinically significant.
Nor does this provision recognise households where multiple family members are disabled. This is more than additive complexity. Multiple disabled members exponentially increase complexity and stress: not only must multiple disabilities be supported, but the interactions between them must be managed, including where disability affects the capacity to perform the roles the legislation presumes, or where behavioural aspects of disability increase the risk and frequency of crisis. This is a significant differentiator in the level of support required for a functional and safe household.
The provisions contain no mechanism to adjust the presumption where the parent is themselves disabled. The assumption embedded in the legislation is that parents have neurotypical capacity to provide the listed forms of care. Where a parent has their own disability affecting physical capacity, cognitive load tolerance or executive function, the presumption that they can provide supervision and physical care for multiple disabled children simultaneously is factually wrong.
The burden that falls on a household where the carer is also disabled, and where multiple children have disability profiles that make intra-household informal support challenging rather than straightforwardly available, is not addressed by this bill. The effect of the presumption in that context is to reduce formal support funding on the basis of informal support capacity that does not exist at the level assumed.
Recommendation 11
The “regardless of the child’s disability, would reasonably be expected of a parent of a child of a similar age” qualifier must apply to both limbs of s.34(1H).
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Recommendation 12
s.34(1H) must be expanded so that “substantial support” and what “would reasonably be expected of a parent of a child of a similar age” is moderated by the actual capacity of the parents — including any disabilities the parent(s) may have — the disability profile of the household (including multiple disabled children and adults), and the additional stresses that exist for parents of disabled children, to ensure the caring load is sustainable long term.
Reassessment Gating and the Underfunding Trap (s.48A)
The considerable tightening of plan reassessment criteria, together with other legislative changes to the NDIS, leaves minimal paths for a participant to seek reassessment where a plan is not appropriate and is underfunded for their circumstances, even where this creates significant risk.
The system as designed creates a trap. This becomes acute once a participant transitions to the new plan regime. There is limited ability to request a review where the capacity assessment process or the supports assessment set by Rules and Directions produces an underfunded plan. This is particularly acute where the assessment process is structurally flawed for a particular individual and how they present with their disability.
This feels very real for our family. We are, as described earlier, a family of strong maskers, such that we ourselves often do not recognise our own limitations. Despite my wife being significantly disabled with high support needs, it literally took years to convince her to apply for the NDIS because she did not believe she needed it. Only after receiving support and understanding the difference it made to what she could do did she acknowledge the need — and even then only partially. Her acceptance and understanding of her own disability remains limited by the same masking that would undermine a standardised assessment.
The underfunding problem this creates is structural. Where a plan is initially underfunded because an individual’s masking understated their functional need, there is no “significant change in functional capacity” to point to. The capacity was always the same. The assessment was wrong. But the gating mechanism requires a change, not a correction, and there is no provision for challenging an assessment that was inaccurate from the start.
Like many other elements of this bill, the effect is to position the NDIS system as knowing best, with little avenue for a participant to challenge a funding level even where it is demonstrably insufficient. Even if a participant achieves a successful decision review or plan reassessment, they are subject to the same deficient capacity assessment and supports determination that incorrectly identified their needs in the first place.
This bill, in combination with prior legislative changes, has progressively narrowed review pathways to the point where the only available remedy for a wrong decision is a repeat of the same process, using the same tools, criteria and rules, that produced the wrong decision. The anomalously high rate at which NDIS decisions are overturned on review reflects chronic misapplication of the rules, not an overly generous review jurisdiction. Removing review rights is the wrong response to that problem.
Recommendation 13
Conduct a comprehensive review of all review and appeal rights, including plan reassessment gating criteria available to NDIS participants across decisions that materially affect their access to, or level of support under, the NDIS, having regard to the cumulative effect of this and prior legislative changes. The review must assess whether participants retain substantive procedural fairness — including the right to have the outcome of a decision, not merely the process, reviewed by an independent body with power to substitute a correct decision. Legislation should be amended to reinstate any review rights found to be inadequate.
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Automated Plan Renewal Without Budget Rollover (s.50A)
From 1 February 2027, plans will automatically renew at the end of their term with the same text but without unspent funding carrying over. One-off items — assistive technology and home modifications — do not carry over by default.
There are two problems with the no-rollover design that the bill does not address.
First, for conditions characterised by fluctuating capacity — including major depressive disorder, PTSD and episodic chronic pain — periods of reduced ability to use supports are a feature of the disability, not evidence that the support is not needed. A participant who under-spends their community participation budget during a depressive episode has not demonstrated the budget was excessive. They have demonstrated that their condition is episodic. The annual budget cycle with no rollover provision penalises that episodic pattern by removing funds at exactly the point when recovery begins and capacity to use supports resumes.
Second, the no-rollover rule creates an end-of-plan spending pressure that the government has elsewhere identified as a problem driving unnecessary expenditure. If unspent funds are lost at plan end, participants and support teams face a choice between spending on something sub-optimal or losing the funds. Neither outcome reflects genuine need-based expenditure.
The solution is not cutting rollover. It is bounded rollover — a maximum of 25% of each budget category’s annual value — sufficient to accommodate episodic fluctuation and incidental under-spend, but not large enough to accumulate indefinitely. Assistive technology and home modification funding that has been formally quoted, ordered or approved should carry over in full until the support is delivered and claimed.
This change is modest and directly serves the bill’s stated goal of aligning NDIS funding with genuine assessed need. It also prevents the perverse outcome of end-of-plan overspending driven by use-it-or lose-it incentives.
Recommendation 14
Unspent funds in each budget category should carry over to a maximum of 25% of that category’s annual value. Assistive technology and home modification funding that has been formally quoted, ordered or approved should carry over in full until the support is delivered and claimed.
- Part C: Future Consultation Priorities
Support Coordination: What the Commissioned Model Must Preserve
Individual funding of support coordination in participant plans will be replaced from 1 July 2028 by a commissioned “support coordination and connection” service.
We accept that support coordination market quality has been variable. We do not accept that a cost reduction-driven commissioned service will produce better outcomes for participants with complex needs.
The value in support coordination, for us, is a specialist who is familiar with our family — the dynamic we operate in and what works for us. That individual knowledge enables accurate targeting of appropriate support. An independent Support Coordinator is an important part of our approach as a subject-matter expert with experience tailored to our needs. They support tasks such as identifying and short-listing workers with the specific skills our situation requires — tasks that can otherwise be challenging for us.
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A commissioned general service, operating within a capped budget targeting a 30% cost reduction, is structurally unable to provide this. The design consultation in the second half of 2026 is the point at which this distinction can be made. We ask the Committee to recommend that the consultation explicitly consider a specialist stream for complex households, with continuity of relationship protected through transition.
Pricing and the Independent Provider Model
The government has announced consultation on differentiated pricing for unregistered providers delivering social/community participation, capacity building and daily living supports. This is not in the bill but is enabled by s.45C.
The rationale appears to be that larger registered providers produce economies of scale that justify higher rates, while unregistered providers should be constrained to lower caps. The aged care comparison directly contradicts this.
The national median hourly rate paid under the Support at Home program for metropolitan weekday daytime services — a sector dominated by larger registered providers — exceeds NDIS maximum rates in every comparable category:
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Personal care/self-care support: aged care median $115.00 vs NDIS maximum $70.23 (63.7% higher)
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Community access support: aged care median $111.00 vs NDIS maximum $70.23 (58.1% higher)
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Occupational therapist: aged care median $222.00 vs NDIS maximum $193.99 (14.4% higher)
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Speech pathology: aged care median $230.00 vs NDIS maximum $193.99 (18.6% higher) Aged care’s large-provider-dominated market pays more than the NDIS in every category, not less. The NDIS achieves lower rates specifically because of provider diversity, including independent workers and small providers. Constraining what self-managed participants can pay independent providers does not produce efficiency. It removes the mechanism that currently produces lower costs, and it forces either a reduction in the quality and qualifications of workers engaged, or a shift to registered providers who cost more.
It is worth noting that our self-managed agreed weekday hourly cost for support workers is less than the median rate under the Support at Home program. In addition, all of our support workers hold significant qualifications appropriate to our family’s needs (mostly bachelor or final-year bachelor degrees in psychology or mental health-related fields).
For self-managed participants who have spent years building a team with specific knowledge of their household’s needs, the practical consequence of pricing constraints is not a cheaper version of the same support. It is the loss of the workers who have that knowledge.
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Recommendation Summary The following table summarises the fourteen recommendations made in this submission. For the full recommendation text, see the relevant section.
No. Subject Summary
1 Legislation redesign Redraft the legislation using qualified individuals representing a range of
lived experiences of disability, utilising inputs from quality consultation and input from the disability community on the design of the assessments, tools, criteria, process and definitions and approach contained within the legislation and any accompanying rules.
2 Economic modelling Conduct economic modelling to identify the economic benefits of the
NDIS and the impacts of this legislation, including whole-of-government displaced-cost modelling and GDP impacts, before any eligibility tightening.
3 "Financial 34A and 45C with "sustainability of the NDIS," defined to encompass:
sustainability" a) the scheme's long term fiscal position;
definition b) its net impact on the broader economy and GDP, including
through workforce participation, job creation for participants and in the care economy, and reduced long-term income support dependency;
c) whole-of-government net cost, accounting for costs displaced to health, mental health, aged care, housing, child protection and justice systems when NDIS support is reduced or withdrawn;
d) the long-term functional capacity of participants and their informal support networks; and
e) intergenerational costs, recognising that unsupported disability across a lifespan creates compounding costs to government that exceed the cost of early and sustained support. A decision made sustainability grounds must have regard to all five elements. So a decision that achieves short-term savings under (a) while producing adverse outcomes under any of (b) through (e) does not constitute a sustainable decision within the meaning of this Act. Ministerial determination made on sustainability grounds must be publicly available, tabled in Parliament, and subject to disallowance..
4 Updated participant Commission new research-based modelling to produce projections of
projections likely participants and their likely plan budget needs based on current knowledge, data, trends and an assessment of what reasonable and necessary support needs are for the disabled population. This should be updated periodically and no later than every five years, providing a solid basis for future planning.
5 Parliamentary Require that all decisions affecting NDIS eligibility and funding levels be
scrutiny of eligibility made through primary legislation subject to reasonable stakeholder and funding rules consultation and full parliamentary scrutiny, with mandatory advance notice to affected participants before any changes take effect.
6 s.34A — prior s.34A should include a requirement for prior public consultation and a
consultation and published impact statement — including demonstration of meeting the merits review requirements of “Sustainability of the NDIS” as defined in Recommendation 3 — before any determination is made. Individual merits review must be available where a participant can demonstrate a materially adverse change to their support structure as a result of the determination.
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No. Subject Summary
7 s.34A — individual Individual plans be subject to a risk assessment before application of any
risk assessment s.34A determination, with s.34A either not applied or moderated based on the outcome of the risk assessment to ensure participant safety.
8 Functional capacity That Section 9B be amended to explicitly reject automated, standardised,
assessment (s.9B) or point-in-time assessment tools as the primary determinator of functional capacity. Instead, the legislation and associated Ministerial Rules must mandate an individualised, holistic assessment model that is context-dependent, expert-led, and explicitly accounts for masking and environmental intersection, and incorporates evidence from experts who work with the participant.
9 "Directly arising" Remove "directly" from s.34(1)(aa) and restore the whole-of-person
test (s.34(1)(aa)) approach, which is consistent with how disabled people experience disability.
10 Evidence hierarchy Lived experience and treating practitioner evidence must be co-equal
(s.34(1E)–(1F)) with peer-reviewed research in the s.34(1E) hierarchy. Remove s.34(1F) so absence of generalisable research cannot operate as a veto.
11 Parental The "regardless of the child's disability, would reasonably be expected of
responsibility a parent of a child of a similar age“ qualifier must apply to both limbs of presumption — limb s.34(1H). alignment (s.34(1H))
12 Parental s.34(1H) must be expanded so that "substantial support" and what
responsibility “would reasonably be expected of a parent of a child of a similar age” is presumption — moderated by the actual capacity of the parents — including any disabilities the parent(s) may have — the disability profile of the carer capacity household (including multiple disabled children and adults), and the (s.34(1H)) additional stresses that exist for parents of disabled children, to ensure the caring load is sustainable long term.
13 Plan reassessment Conduct a comprehensive review of all review and appeal rights,
gating (s.48A) including plan reassessment gating criteria available to NDIS participants across decisions that materially affect their access to, or level of support under, the NDIS, having regard to the cumulative effect of this and prior legislative changes. The review must assess whether participants retain substantive procedural fairness — including the right to have the outcome of a decision, not merely the process, reviewed by an independent body with power to substitute a correct decision. Legislation should be amended to reinstate any review rights found to be inadequate.
14 Unspent funds — Unspent funds in each budget category should carry over to a maximum
rollover (s.50A) of 25% of that category’s annual value. Assistive technology and home modification funding that has been formally quoted, ordered or approved should carry over in full until the support is delivered and claimed.
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Appendix A: A Personal Reflection on Sustainability
What do we want a “sustainable NDIS” to actually mean? Not just for the budget bottom line, but for disabled people, for families, for future generations, and for the long-term costs government carries when support comes too late?
I offer my story because it shows what happens when sustainability is defined too narrowly, when the system counts NDIS dollars but not the lifelong, generational and whole-of-government costs of disabled people who fall through the cracks.
I was that kid. You may have come across me, maybe in mothers’ group or day care. I often needed to be near my mum, struggled when she left, struggled to interact with other kids. I was quiet, never caused trouble, the “good kid”, the quiet kid, but also the kid who didn’t quite fit. I gravitated to adults more than children.
In preprimary I struggled to adjust, but I was lucky: I had a teacher who structured things differently. By year one I was reading well ahead of the class, but my writing didn’t match. In the playground I was mostly alone, often teased, sometimes hovering at the edge of groups but never really in them. A bit anxious. Quiet.
By year three things weren’t working. Alternative schools, alternative approaches. Clearly intelligent, always the good kid, but still something wasn’t connecting.
Year seven, back in mainstream school, but still not performing to my potential. In high school, academics became a kind of saviour. The work came easily; I moved quickly from average to the top. Socially it was still a struggle, but I found a group of sorts. I was the quiet one in the group of odd kids. People thought I would be dux of the school, but something happened. I didn’t achieve what I was capable of.
University was different, but also the same. I excelled at first, then by third year I was crashing. I had the sense to withdraw for a while and recuperate. I came back and graduated. Those who knew me couldn’t understand why my grades weren’t higher, why I wasn’t doing honours, but I did well enough.
In the workforce I excelled quickly. I was sought after because I knew my stuff. The rest of my life, well, I had few friends, struggled to meet people or date. But I achieved at work. I was paid well. I contributed good taxes to the country. I established a pattern: work hard, then take an extended break. I thought it was smart. I didn’t realise it was survival.
Then I crashed. I didn’t recognise it at the time. I thought I was bored, frustrated, needed a change. That wasn’t it. That was the last time I worked, before I’d even reached 40. My brain can do a lot, but as a whole, I couldn’t any more. I kept thinking: just some time, and I’ll find that spark again. Surely that’s all I need.
I was lucky, at that time, I found the love of my life. I still thought I was okay. I focused on family and kids and being a father, something I discovered I could do well.
But what about me? Where am I now, besides being a carer, father and husband, all of which I cherish?
If intelligence and the ability to think were enough, I’d be thriving. But basic chores and leaving the house are a challenge, usually I don’t. I have to adapt constantly to overwhelm and a nervous system that is shot. I can’t function as I used to, not even close. I can’t earn an income. I now need government support. No more taxes from me.
And now I am dealing with the conditions that often travel with disability, in my case, Ehlers-Danlos Syndrome. The combination is not additive; it is compounding. Each condition amplifies the other, and the functional and economic impacts rise accordingly.
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My medical costs are increasing, as are the costs to Medicare. Psychologists are now a regular part of my life. I will work to rebuild my capacity, I am stubborn and determined, but that alone will not be enough. I cannot realistically see a path back to the workforce.
From high-income taxpayer to needing support.
It is a pattern repeated again and again among late-diagnosed Autistic people. My mum is the same: her story is remarkably similar, just 25 years earlier. I see many others the same, down the road or in the park. We get it. Others don’t.
I wonder what my story would have been with support. Early intervention would have helped, but that alone wouldn’t have changed the course. Sustained support and understanding? Maybe I would have achieved my potential. Some people thought I could change the world. Many wondered why I didn’t live up to what they saw in me.
The economic modelling never counts the cost of the potential that is lost when people like me fall through the cracks. Not just the financial cost, but the social, medical, psychological and whole-of government costs that accumulate over a lifetime.
And this isn’t just my story, it is a pattern that repeats unless something interrupts it.
And what about my kids?
Our story isn’t anywhere near the worst; we are still among the lucky ones.
The scheme’s stated goal, and the focus of the current legislation, is financial sustainability. But the long-term fiscal cost of a person moving from high tax contribution to full system dependency, Medicare, psychology, income support, is not modelled anywhere in the bill’s impact analysis. And this pattern repeats across generations in the same family.
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