Submission 3495 — Ms Tracy Leigh (3495 | External submission

SUPPLEMENTARY SUBMISSION TO THE SENATE COMMUNITY AFFAIRS

LEGISLATION COMMITTEE INQUIRY

National Disability Insurance Scheme Amendment (Securing the NDIS for Future

Generations) Bill 2026

When Counting Beans is More Important Than Human Beings, Lives Are Lost

Tracy Leigh, NDIS participant and disability and consumer advocate

THIS IS A SUPPLEMENTARY SUBMISSIONS WRITTEN WITH THE ASSISTANCE OF CHATGPT FROM MY

OWN RESEARCH THAT FILLS IN LEGISLATIVE AND TECHNICAL GAPS IN MY PRIMARY SUBMISSION.

I hope that the Committee will accept this supplementary submission

Executive Summary

This submission opposes the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 (“the Future Generations Bill”).

The Future Generations Bill is presented by the Government as a measure intended to return the National Disability Insurance Scheme (“NDIS”) to its original purpose and secure its future sustainability. However, a detailed examination of the Bill, the original Productivity Commission recommendations, the original National Disability Insurance Scheme Bill 2012, and the second reading speeches introducing both legislative schemes demonstrates that the Bill moves the NDIS further away from its original intent rather than restoring it.

The original NDIS was conceived as a rights-based social insurance scheme founded on the principle that Australians with significant and permanent disability should receive the reasonable and necessary supports required to live an ordinary life with dignity, independence, social participation and economic inclusion. It was intended to replace a crisis-driven and rationed system that allocated support according to budget constraints rather than human need.

Prime Minister Julia Gillard described the pre-NDIS system as one that “reacts to crisis” and “metes out support rationed by arbitrary budget allocations, not real human needs”. She stated that the purpose of the NDIS was to provide disability care and support “over their lifetimes” and to establish

a “nation-wide, demand-driven system of care tailored to the needs of each individual and established on a durable, long-term basis”.1

By contrast, the Future Generations Bill introduces a series of amendments that fundamentally alter the relationship between participants and the Scheme. These include:

new functional-capacity thresholds for access;
provisions that narrow the meaning of permanent impairment through concepts of “appropriate treatment”;
expanded rule-making powers capable of substantially altering participant entitlements through delegated legislation;
increased barriers to accessing supports;
limitations on review and reassessment processes; and
repeated elevation of “financial sustainability” as a decision-making criterion. The Bill assumes that expenditure growth is itself evidence of policy failure. However, the Productivity Commission did not conceive of sustainability as a mechanism for restricting support. Rather, it understood disability support as a long-term social and economic investment that would generate substantial economic returns through increased workforce participation, reduced reliance on crisis systems, improved health outcomes and greater community participation.

Subsequent economic analysis has confirmed that investment in disability supports generates substantial economic benefits and reduces costs elsewhere across government systems. Treating financial sustainability as a justification for reducing supports ignores both the original rationale for the NDIS and the broader economic benefits that flow from adequate disability supports.

This submission further argues that several provisions of the Bill are inconsistent with Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities (“UNCRPD”), particularly Articles 3, 4, 5, 19, 26 and 28.

Most concerningly, the Bill represents a shift away from the original promise of lifetime certainty and support. The original NDIS was founded on the principle that participants and families could have confidence that supports would be available for life. The new framework instead creates ongoing uncertainty through reassessment mechanisms, changing eligibility thresholds and broad delegated powers capable of altering entitlements without further primary legislation.

1 Commonwealth, Parliamentary Debates, House of Representatives, 29 November 2012, 13877 (Julia Gillard, Prime Minister).

The Committee should recommend substantial amendment of the Bill. In its current form, it risks transforming the NDIS from a rights-based insurance scheme into a fiscally constrained program in which support levels are increasingly determined by budget objectives rather than individual need.

Introduction

The NDIS is one of the most significant social reforms in Australia’s history.

It was created following the landmark 2011 Productivity Commission inquiry into Disability Care and Support. That inquiry found that the existing disability support system was underfunded, unfair, fragmented and inefficient. The Commission concluded that Australians with significant disability were effectively forced to navigate a system characterised by unmet need, waiting lists, crisis responses and arbitrary rationing of supports.

The Commission recommended a fundamentally different approach. Rather than treating disability support as discretionary welfare expenditure, it proposed a national insurance scheme providing individualised supports based upon need and delivering assistance over a person’s lifetime.

The Parliament accepted that recommendation.

Introducing the National Disability Insurance Scheme Bill 2012, Prime Minister Julia Gillard stated

that the Scheme would “transform the lives of people with disability, their families and carers” and that for the first time people with disability would have their needs met “in a way that truly supports them to live with choice and dignity”.2

Prime Minister Gillard further stated:

“It will bring an end to the tragedy of services denied or delayed and instead offer people with disability the care and support they need over their lifetimes.”3

The Future Generations Bill claims to restore that original intent.

In his second reading speech, Minister Butler stated that the Bill seeks to:

“return the NDIS to its original intent—providing lifetime supports for Australians with permanent and significant disability.4

2 Ibid. 3 Ibid. 4 Commonwealth, Parliamentary Debates, House of Representatives, 14 May 2026, 6 (Mark Butler, Minister for the NDIS).

This submission argues that the Bill does the opposite.

While presented as a technical reform package, the Bill introduces structural changes that shift the focus of the Scheme away from individual need and towards expenditure control. New access criteria, expanded rule-making powers, limitations on participant rights and the increasing prominence of “financial sustainability” throughout the legislative framework collectively undermine the principles that originally justified creation of the NDIS.

The Productivity Commission did not propose an expenditure minimisation scheme. It proposed a social insurance model that recognised both the human and economic benefits of disability support. Likewise, the original NDIS Act was enacted to provide certainty, dignity, independence and participation, not merely to control costs.

This submission examines the extent to which the Future Generations Bill departs from those original principles and identifies areas where the Bill risks undermining Australia’s commitments under the UNCRPD.

The Committee is urged to consider not only whether the Bill reduces expenditure growth, but whether it remains faithful to the fundamental purpose for which the NDIS was created.

The central question is simple:

Does this Bill strengthen the right of Australians with disability to live ordinary lives with dignity and participation, or does it restore the very rationing framework that the NDIS was originally created to replace?

The Original Purpose of the National Disability Insurance Scheme

The NDIS was not conceived as a budget-control mechanism. It was conceived as a nation-building reform designed to address longstanding injustice experienced by Australians with disability and their families.

The Productivity Commission’s landmark 2011 report found that Australia’s disability support system was “underfunded, unfair, fragmented, and inefficient”. The Commission concluded that disability support services varied dramatically depending upon where a person lived, the nature of their disability, and the availability of government funding. Access to support was often determined not by need, but by rationing and waiting lists.

The Commission described the existing arrangements as a system in which many Australians with significant disability were unable to obtain the support necessary to participate in community life, education, employment and social relationships. It concluded that disability support should no longer be treated as discretionary welfare expenditure but instead as a form of social insurance that recognised both the individual and societal benefits arising from appropriate support.

The Commission’s recommendations ultimately became the foundation of the National Disability Insurance Scheme Act 2013 (Cth).

Introducing the National Disability Insurance Scheme Bill 2012, Prime Minister Julia Gillard described

the existing disability system as one that “reacts to crisis” and “metes out support rationed by arbitrary budget allocations, not real human needs”. She stated that the purpose of the NDIS was to end this cycle and provide people with disability with the care and support they require “over their lifetimes”.5

The Prime Minister further stated:

“It will establish a nation-wide, demand-driven system of care and support, tailored to the needs of each individual and established on a durable, long-term basis.”6

These statements are significant because they reveal the central purpose of the Scheme. The NDIS was intended to be demand-driven rather than budget-driven. Supports were intended to be determined by individual need rather than available funding allocations. The objective was not merely to provide minimum services but to enable Australians with disability to live ordinary lives characterised by dignity, participation, independence and social inclusion.

These principles were subsequently reflected in the objects and principles of the NDIS Act.

Section 3 of the Act provides that the objects of the legislation include supporting the independence and social and economic participation of people with disability, enabling people with disability to exercise choice and control, facilitating nationally consistent access to supports, and giving effect to Australia’s obligations under the UNCRPD.

Section 4 reinforces these objectives by recognising that people with disability should be supported to participate in and contribute to social and economic life to the extent of their ability, should have

5 C ommonwealth, Parliamentary Debates, House of Representatives, 29 November 2012, 13877 (Julia Gillard, Prime Minister). 6 Ibid.

the same rights as other members of Australian society, and should be supported to exercise choice and control in pursuit of their goals and aspirations.

Importantly, neither the Productivity Commission nor the original legislation conceived of sustainability as an end in itself. Sustainability was understood as a mechanism for ensuring that the Scheme remained capable of delivering its objectives into the future. It was not intended to override participant rights, limit reasonable and necessary supports, or justify reducing supports for people with permanent and significant disability.

The Productivity Commission’s analysis was based upon the understanding that disability supports generate substantial social and economic returns. Increased participation in employment, education and community life reduces long-term expenditure in other government systems while improving quality of life for participants and families. The Commission therefore viewed disability support as an investment rather than a cost.

This distinction is fundamental.

The original NDIS model recognised that expenditure on disability supports may increase in the short term while simultaneously generating significant social and economic benefits over the longer term. The objective was to maximise outcomes for people with disability while maintaining a financially viable scheme capable of meeting future demand.

The Future Generations Bill departs from this conception of sustainability. Throughout the Bill, financial sustainability increasingly appears as a constraint upon access to supports rather than as a mechanism for ensuring the long-term success of the Scheme. This represents a significant shift in legislative philosophy.

The question before the Committee is therefore not whether sustainability is important. No participant, family member or advocate disputes that the Scheme must remain financially viable.

The question is whether the Future Generations Bill preserves the original balance between sustainability and participant rights, or whether it elevates expenditure control above the very objectives that justified creation of the NDIS in the first place.

As discussed below, the provisions of the Bill suggest the latter.

The Future Generations Bill Does Not Restore the Original Intent of the NDIS

A central claim advanced by the Government is that the Future Generations Bill restores the NDIS to its original purpose. In his second reading speech, Minister Butler repeatedly stated that the Bill would return the Scheme to its original intent and ensure that supports remain available for future generations of Australians with disability.

On its face, this proposition appears attractive. The long-term success of the NDIS is plainly important. However, a detailed comparison of the original NDIS framework with the provisions of the Future Generations Bill demonstrates that the Bill does not restore the original intent of the Scheme. Rather, it fundamentally alters it.

The original NDIS was designed to provide certainty, individualised supports and lifetime assistance for people with permanent and significant disability. The Future Generations Bill introduces mechanisms that increase uncertainty, expand reassessment processes, narrow eligibility criteria and elevate financial considerations throughout the legislative framework. The difference is not merely administrative. It reflects a fundamental shift in legislative philosophy.

Lifetime Support Versus Ongoing Reassessment

One of the most important promises made during the creation of the NDIS was that Australians with permanent and significant disability would receive support over their lifetimes. Prime Minister Gillard expressly stated that the NDIS would provide people with disability with the support they require “over their lifetimes”.7

The concept of permanence was central to the social contract underpinning the Scheme. Participants and their families were encouraged to believe that once permanent and significant disability was established, support would be available on an ongoing basis according to need. The Future Generations Bill departs from that principle.

New provisions relating to functional capacity and impairment assessment apply to decisions made after commencement, including decisions affecting existing participants. The Bill therefore creates a framework under which participants who have already established eligibility may be reassessed under new legislative criteria. For many participants, this represents a significant departure from the understanding upon which they entered the Scheme.

7 Ibid.

The practical effect is that a participant’s disability may remain permanent while their entitlement to support becomes increasingly conditional. The distinction is critical. A lifetime disability does not become temporary because government expenditure increases. Yet the Future Generations Bill introduces mechanisms capable of producing outcomes that are inconsistent with the original promise of lifetime certainty.

The Introduction of “Appropriate Treatment” as a Gatekeeping Mechanism

The original NDIS recognised that many disabilities are permanent and cannot be cured. The focus of the Scheme was therefore directed towards supports that maximise independence, participation and quality of life rather than requiring participants to continually prove that their disability remains permanent.

The Future Generations Bill introduces proposed s 25A through Item 92 of Schedule 1, Part 8, establishing a new framework for determining whether an impairment is permanent. Under proposed ss 24(5) and 25(1B), an impairment will not be regarded as permanent, or likely to be permanent, unless the person has undertaken all “appropriate treatment”, any other treatment is unlikely to materially improve, reverse or alleviate the impact of the impairment, and the impairment is likely to persist for the person’s lifetime.

Proposed s 25A(1) defines “appropriate treatment” as treatment that is evidence-based, can reliably be expected to materially improve, reverse or alleviate the impact of the impairment, and is regularly undertaken or performed in Australia. Critically, proposed s 25A(2) provides that treatment may constitute “appropriate treatment” regardless of whether the person’s individual circumstances restrict access to that treatment. The accompanying note expressly states that a person’s individual circumstances include their financial circumstances and geographical location.

The practical effect is that a participant may be required to demonstrate that all treatment regarded as “appropriate” has been undertaken even where that treatment is unaffordable, unavailable locally, inaccessible because of disability, or otherwise beyond the person’s practical reach. This represents a significant departure from the original conception of permanence under the NDIS, shifting the focus from the enduring nature of the impairment itself to whether all prescribed treatment options have been exhausted.

In doing so, the Bill introduces a treatment-based gatekeeping mechanism that may narrow access to the Scheme and expose both applicants and existing participants to reassessment against criteria that did not exist when they originally entered the NDIS. Item 94 further provides that these

amendments apply to determinations and decisions made after commencement whether or not the person is already a participant, meaning the new permanence framework is capable of affecting existing participants as well as future applicants.

Although presented as a clarification measure, the provision has the potential to significantly narrow access to the Scheme. Many disabilities fluctuate over time. Others respond partially to treatment without ceasing to be permanent. Some treatments may improve symptoms while leaving substantial functional impairment intact. The original NDIS framework recognised these realities.

The new provisions create a risk that permanence will increasingly be assessed through a treatment focused lens rather than by reference to the enduring nature of the underlying disability. This approach is inconsistent with the original philosophy of the Scheme, which focused upon support needs arising from disability rather than hypothetical future treatment outcomes.

Financial Sustainability as a Dominant Legislative Principle

The original NDIS Act contained references to sustainability. However, sustainability was not positioned as a competing objective capable of overriding participant rights. The original framework viewed sustainability as a means of ensuring the long-term operation of the Scheme so that people with disability could continue to receive support.

The Future Generations Bill repeatedly introduces financial sustainability as a relevant consideration throughout multiple decision-making provisions. The cumulative effect of these amendments is significant. Rather than supporting the objects and principles of the Act, sustainability increasingly becomes a consideration capable of constraining them. This creates a fundamental tension.

If the purpose of the Scheme is to support independence, social participation, dignity, choice and control, then sustainability should operate to facilitate those objectives. If sustainability instead becomes a reason to reduce supports, narrow eligibility or restrict participation, it ceases to be a mechanism supporting the objectives of the Act and instead becomes a competing objective in its own right.

Nothing in the original Productivity Commission model suggested that financial sustainability should displace the rights and aspirations of people with disability. To the contrary, the Commission’s analysis was based upon the proposition that appropriate supports would generate substantial economic and social returns.

Expansion of Executive Power Through Rules

Perhaps the most significant departure from the original intent of the NDIS is the expansion of executive rule-making powers. The original Scheme established broad participant rights through primary legislation. The Future Generations Bill increasingly relies upon rules to define, limit and regulate participant entitlements.

The practical consequence is that matters previously determined by Parliament may increasingly be determined through delegated legislation. This includes the ability to establish different requirements for different classes of participants and different classes of supports, and to determine, through delegated legislation, what supports may or may not be funded for particular cohorts of participants. The result is reduced parliamentary scrutiny and increased executive discretion.

The original NDIS was founded upon nationally consistent entitlements. The Future Generations Bill moves the Scheme towards a model in which rights and entitlements may be altered more readily through ministerial instruments without parliamentary scrutiny. Such an approach is difficult to reconcile with the original promise of certainty and security.

Returning to the Original Intent?

The central difficulty for the Government is that the operative provisions of the Bill do not align with the rhetoric of the second reading speech. The original NDIS was designed to replace rationing with rights. It was designed to replace uncertainty with certainty. It was designed to replace crisis responses with long-term support. It was designed to provide assistance over a participant’s lifetime.

The Future Generations Bill moves in the opposite direction. It introduces greater uncertainty, broader reassessment mechanisms, stronger expenditure controls and increased executive discretion. Whatever the merits of those reforms may be, they cannot accurately be described as a return to the original intent of the NDIS. They represent a significant departure from it.

Financial Sustainability Has Been Reinterpreted Beyond Its Original Meaning

The concept of “financial sustainability” has become the central justification for the Future Generations Bill. The Government has repeatedly asserted that reform is necessary because expenditure growth within the NDIS is unsustainable. The Bill introduces references to financial sustainability throughout the legislative framework and presents expenditure restraint as an essential objective of reform.

However, neither the Productivity Commission nor the original NDIS Act conceived of sustainability in this manner. The original NDIS was founded upon the understanding that disability supports represent an investment in human capability, participation and economic contribution. Sustainability was intended to ensure that the Scheme remained capable of delivering those benefits into the future. It was never intended to become a mechanism for restricting supports or reducing participant entitlements.

The distinction is fundamental. A scheme can only be regarded as sustainable if it continues to achieve the purpose for which it was created. A disability support scheme that reduces expenditure by reducing supports may improve budget figures while simultaneously failing the very people it was designed to assist.

The Productivity Commission’s Understanding of Sustainability

The Productivity Commission did not assess disability support solely through the lens of expenditure. Rather, it examined the broader social and economic consequences of inadequate support. The Commission found that the existing disability system imposed substantial costs not only upon people with disability and their families, but also upon governments, employers, health systems and the broader economy.

People with disability were excluded from employment, education and community participation. Families were forced to withdraw from the workforce to provide care. Health conditions deteriorated because supports were unavailable. Crises occurred that required intervention from more expensive government systems. The Commission’s response was not to reduce support. Its response was to recommend increased investment.

The Commission recognised that providing appropriate supports at the right time would reduce costs elsewhere and improve long-term economic participation. The NDIS was therefore designed as a social insurance scheme rather than a welfare program. Insurance schemes do not measure success solely by minimising claims. They measure success by achieving the purpose for which the insurance exists.

The original purpose of the NDIS was to sustain ability.

Financial Sustainability Cannot Be Assessed Solely Through Expenditure

A striking feature of contemporary discussions about NDIS sustainability is the absence of any meaningful discussion about benefits. Public debate frequently focuses upon annual expenditure

growth, total scheme cost and projected future liabilities. Much less attention is paid to the economic and social value generated by those expenditures. This creates a distorted picture.

No rational assessment of sustainability would evaluate only one side of a balance sheet. The sustainability of any public investment depends upon both costs and benefits. The question is not simply how much the Scheme costs. The question is what Australia receives in return.

The Productivity Commission recognised this principle. So too have subsequent economic studies. Analysis undertaken by Per Capita found that investment in the NDIS generates substantial economic returns through increased workforce participation, reduced reliance upon informal care, improved productivity and reduced pressure on other government systems. The report concluded that every dollar invested in the NDIS generates approximately $2.25 in economic and social value.8 If that analysis is correct, then reducing supports may actually reduce sustainability rather than improve it.

The consequence of support reductions may include:

increased hospital admissions;
increased mental health presentations;
increased homelessness;
increased reliance upon carers;
reduced workforce participation by participants and families;
increased demand upon state-funded services;
increased use of emergency and crisis systems; and
reduced social and economic participation. Such outcomes may reduce expenditure within the NDIS while increasing expenditure elsewhere. That is not sustainability. It is cost shifting.

8 Per Capita, False Economy: The Economic Benefits of the National Disability Insurance Scheme and the

Consequences of Government Cost-Cutting (Report, November 2021) <https://percapita.org.au/wp content/uploads/2021/11/NDS_031121_per-capita-report.pdf>.

The Bill Contains No Meaningful Definition of Financial Sustainability

Despite the prominence of financial sustainability throughout the Bill, the concept remains largely undefined. The legislation does not establish any measurable criteria for determining whether the Scheme is financially sustainable. It does not require decision-makers to consider economic benefits generated by supports. It does not require consideration of avoided costs. It does not require assessment of broader social returns. It does not require consideration of the long-term consequences of support reductions. Instead, the concept is left largely open-ended.

This creates a significant risk that sustainability becomes synonymous with expenditure reduction. Such an approach is inconsistent with both the Productivity Commission’s original vision and accepted principles of public policy analysis. A scheme that delivers positive net economic benefits cannot logically be assessed solely by reference to gross expenditure.

Financial Sustainability Must Be Read Consistently With the Objects of the Act

The NDIS Act contains a detailed statement of objects and principles. These include supporting the independence and social and economic participation of people with disability, enabling choice and control, facilitating community inclusion and giving effect to Australia’s obligations under the UNCRPD. These objects provide the context in which all provisions of the Act must operate.

Financial sustainability cannot be interpreted in isolation. Nor can it be elevated above the objects that Parliament expressly chose to place at the centre of the legislation. A construction that treats sustainability as overriding participant rights would invert the structure of the Act. The more coherent interpretation is that sustainability exists to support the achievement of those objectives over time. In other words, the Scheme should be financially sustainable because Australians with disability have rights that require ongoing support. The rights do not exist only when the budget permits.

The Language of Sustainability Risks Replacing the Language of Rights

The original NDIS was framed in the language of rights, participation, independence and inclusion. The Future Generations Bill increasingly frames disability support through the language of expenditure management and sustainability. Language matters.

How governments describe a problem influences how they respond to it. When disability support is framed as a cost, the logical response is restraint. When disability support is framed as an investment, the logical response is optimisation. When disability support is framed as a human right,

the logical response is protection. The original NDIS framework sought to balance all three considerations. The Future Generations Bill places disproportionate emphasis upon the first.

Sustaining Ability

The Committee should be cautious about accepting claims that sustainability necessarily requires reductions in participant supports. The original NDIS was built upon a simple proposition. Appropriate disability supports sustain ability. They sustain independence, participation, employment, family relationships, health, dignity and, in some cases, they sustain life itself. The question is therefore not whether Australia can afford to sustain ability. The question is whether Australia can afford not to.

If the objective of the NDIS is to support Australians with permanent and significant disability to live ordinary lives, then financial sustainability should be assessed by reference to how effectively the Scheme sustains ability, not merely by how effectively it reduces expenditure.

The Future Generations Bill Creates a Fundamental Tension Between Financial

Sustainability and the Objects and Principles of the NDIS Act

One of the most significant concerns arising from the Future Generations Bill is the increasing tension between the financial sustainability provisions introduced by the Bill and the existing objects and principles of the NDIS Act. The NDIS Act was not enacted as a financial management statute. It was enacted as social legislation intended to improve the lives of Australians with disability.

The objects of the Act establish the fundamental purposes for which Parliament created the Scheme. These purposes include supporting the independence and social and economic participation of people with disability, enabling people with disability to exercise choice and control in pursuit of their goals and aspirations, supporting the development of their capacity to participate in the community and giving effect to Australia’s obligations under the UNCRPD.

The general principles reinforce those objectives. They recognise that people with disability have the same rights as other members of Australian society, that they should be supported to participate in social and economic life to the extent of their ability, and that they should be supported to determine their own best interests and exercise choice and control over decisions affecting their lives.

These provisions establish a clear legislative philosophy. The Scheme exists to support people with disability. Financial sustainability exists to ensure that the Scheme remains capable of fulfilling that purpose. The Future Generations Bill alters this relationship.

Financial Sustainability as a Competing Objective

The Bill repeatedly elevates financial sustainability as an express consideration in decision-making. The effect is not merely symbolic. The more frequently sustainability is introduced as a relevant consideration, the greater the risk that it becomes a competing objective rather than a supporting principle.

This creates an inevitable question for decision-makers. What happens when a participant’s support needs point in one direction and sustainability considerations point in another? The Bill does not clearly identify which consideration should prevail. The original NDIS framework largely avoided this conflict. Reasonable and necessary supports were assessed by reference to the participant’s circumstances, goals, disability-related needs and the statutory criteria. The Future Generations Bill introduces provisions that increasingly require decision-makers to consider sustainability alongside participant needs. The result is a legislative framework in which two fundamentally different objectives may pull in opposite directions.

One objective seeks to maximise participation, independence and support. The other seeks to constrain expenditure growth. The Bill provides little guidance regarding how such conflicts should be resolved.

The Objects of the Act Remain Largely Unchanged

Significantly, the Bill does not repeal the core objects and principles of the NDIS Act. The Act continues to state that people with disability should be supported to pursue their goals and aspirations. The Act continues to recognise the importance of choice and control. The Act continues to support social and economic participation. The Act continues to give effect to Australia’s obligations under the UNCRPD. These provisions remain part of the legislative framework.

Consequently, Parliament has not replaced a rights-based model with a sustainability-based model. Instead, it has inserted sustainability considerations into a framework that remains fundamentally rights-based. This creates an internal inconsistency.

The more prominence given to sustainability, the more difficult it becomes to reconcile that objective with the existing statutory commitment to participant-centred decision-making.

Financial Sustainability Was Never Intended to Override Rights

Nothing in the Productivity Commission’s report suggests that sustainability should override participant rights. To the contrary, the Commission repeatedly emphasised that the purpose of sustainability was to ensure that appropriate supports remained available over the long term. The Commission’s analysis assumed that supports would continue to be provided. Its concern was how best to fund those supports, not whether supports should be reduced.

Similarly, Prime Minister Gillard did not present the NDIS as a program designed to minimise expenditure. She presented it as a response to a system that rationed support according to arbitrary budget allocations rather than human need. The purpose of the NDIS was to replace rationing. The Future Generations Bill risks reintroducing it.

Human Rights and Financial Sustainability

The tension created by the Bill is not merely theoretical. For many participants, support funding directly affects their ability to live independently, access medical care, participate in the community, maintain employment, continue education, care for children, avoid institutionalisation and preserve their physical and mental health. The consequences of support reductions are therefore experienced not as accounting measures but as restrictions upon daily life. This reality is reflected throughout the UNCRPD.

The Convention recognises that disability rights cannot be separated from the practical supports necessary to exercise those rights. A right to live independently has little meaning if the supports necessary for independent living are unavailable. A right to participate in the community has little meaning if the supports necessary for participation are withdrawn. A right to equality becomes increasingly theoretical when the resources required to achieve equality are progressively reduced.

The more sustainability becomes a justification for reducing supports, the more difficult it becomes to reconcile the Bill with the human rights framework upon which the original Act was founded.

An Internal Contradiction

The Committee should carefully consider whether the Future Generations Bill creates an internal contradiction within the NDIS Act. On one hand, the Act continues to recognise dignity, choice, control, independence, participation and inclusion as central objectives. On the other, the Bill introduces a framework that increasingly emphasises expenditure restraint and sustainability. The problem is not that sustainability matters. The problem is that the Bill provides no clear explanation

of how sustainability is to be balanced against the rights, aspirations and participation of people with disability.

In the absence of such guidance, there is a real risk that financial considerations will progressively displace the participant-centred philosophy that originally justified creation of the NDIS. That outcome would not restore the original intent of the Scheme. It would fundamentally alter it.

Financial Sustainability Cannot Justify Retrogressive Human Rights Measures

The Future Generations Bill is repeatedly justified by reference to financial sustainability. The Committee should carefully consider whether the pursuit of financial sustainability can lawfully, morally or practically justify reductions in disability supports that undermine the rights of people with disability. This question is particularly important because the NDIS Act expressly recognises Australia’s obligations under the UNCRPD.

The NDIS was never intended to be merely an administrative funding mechanism. It was intended to give practical effect to rights that Australia had already recognised through its ratification of the Convention. The Future Generations Bill risks reversing progress that has been made over the last decade by creating mechanisms capable of reducing supports that are necessary for the exercise of those rights.

The UNCRPD Is Not Merely Aspirational

The objects of the NDIS Act expressly provide that one of the purposes of the legislation is to give effect to Australia’s obligations under the Convention on the Rights of Persons with Disabilities. This was a deliberate decision by Parliament. The Convention recognises that disability rights are not achieved merely by prohibiting discrimination. Meaningful equality requires access to supports that enable people with disability to participate in society on an equal basis with others. The Convention therefore repeatedly links rights with practical support mechanisms.

The ability to exercise a right often depends upon access to the support necessary to make that right real. The Future Generations Bill must therefore be assessed not only by reference to expenditure outcomes but also by reference to the impact it may have upon the rights the Scheme was originally intended to support.

Article 19 – Living Independently and Being Included in the Community

Article 19 recognises the right of people with disability to live independently and be included in the community. It requires access to a range of in-home and community supports necessary to prevent isolation or segregation. For many NDIS participants, support workers, domestic assistance, personal care, transport supports, community access supports, psychosocial supports and assistive technology are the very mechanisms that make independent living possible. Without those supports, participation becomes theoretical.

The Bill creates multiple pathways through which supports may be restricted, reduced or redefined. Where those reductions diminish a participant’s capacity to live independently, there is a significant risk that the practical enjoyment of Article 19 rights will be diminished. The Committee should recognise that independent living is not achieved by legislative declarations alone. It is achieved through the supports that allow people to leave their homes, maintain relationships, engage with their communities and exercise control over their lives.

Article 20 – Personal Mobility

Article 20 requires States Parties to facilitate personal mobility at the greatest possible level of independence. Mobility supports are among the most transformative supports funded by the NDIS. Wheelchairs, mobility scooters, vehicle modifications, assistive technology and related supports frequently determine whether a participant can participate in education, employment, community activities and family life.

The Future Generations Bill introduces mechanisms capable of restricting support categories and funding arrangements through delegated legislation. Where those mechanisms result in reduced access to mobility supports, the practical exercise of Article 20 rights may be compromised. The issue is not whether every support request should be funded. The issue is whether legislative mechanisms should permit reductions based upon financial sustainability considerations rather than individual need.

Article 26 – Habilitation and Rehabilitation

Article 26 requires States Parties to support people with disability in attaining and maintaining maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life. This obligation reflects one of the central purposes of the NDIS.

Supports are not provided merely to maintain survival. They are provided to maximise participation and independence.

Many supports that appear expensive when viewed in isolation ultimately reduce long-term costs by increasing independence and reducing reliance upon more intensive services. The Productivity Commission recognised this principle repeatedly throughout its report. The Future Generations Bill shifts focus away from maximising outcomes and towards controlling expenditure growth. In doing so, it risks undermining the rehabilitative and capacity-building objectives recognised by Article 26.

Article 28 – Adequate Standard of Living and Social Protection

Article 28 recognises the right of people with disability to an adequate standard of living and social protection. Disability often creates costs that are not experienced by other members of society. Supports funded through the NDIS frequently compensate for those additional costs and assist participants to achieve a standard of living that would otherwise be unattainable.

Where supports are reduced or removed, the consequences may include poverty, social isolation, deteriorating health and reduced access to essential services. The Committee should recognise that support reductions do not occur in a vacuum. They occur in the context of the lived experience of people whose capacity to compensate for those reductions is often extremely limited.

Article 4(4) and the Principle of Non-Retrogression

Perhaps the most significant Convention principle engaged by the Future Generations Bill is the principle reflected in Article 4(4). Article 4(4) provides that there shall be no restriction upon or derogation from existing human rights and fundamental freedoms recognised within a State Party. While the Convention does not prohibit all reform, it does recognise that States should not move backwards in the protection of disability rights without compelling justification. This principle is commonly described as the principle of non-retrogression. The principle is particularly relevant where an existing statutory scheme has delivered practical improvements in the exercise of disability rights.

The NDIS represented one of the most significant advances in disability rights in Australian history. The Committee should therefore ask whether the Future Generations Bill advances those rights or diminishes them. Several features of the Bill raise concerns in this regard.

These include:

expanded powers to reduce support funding through delegated legislation; 19

new eligibility restrictions;
reassessment mechanisms applying to existing participants;
functional-capacity thresholds;
the “appropriate treatment” framework;
support limitations linked to financial sustainability; and
expanded executive discretion over participant entitlements. Each of these measures may be defensible individually. The concern arises from their cumulative effect. Taken together, they create a legislative framework that is less protective of participant rights than the framework originally established by the NDIS Act.

Human Rights Are Not Cost Neutral

The Committee should also recognise that human rights frequently require expenditure. The right to vote requires polling places. The right to education requires schools. The right to health requires healthcare systems. The rights recognised by the UNCRPD similarly require practical supports.

The fact that those supports cost money does not diminish the rights they protect. Nor does financial pressure automatically justify reducing access to those supports. The central question is therefore not whether disability supports are expensive. The question is whether Australia remains willing to invest in the rights it has chosen to recognise.

The Risk Created by the Future Generations Bill

The greatest risk posed by the Future Generations Bill is not any single provision. It is the cumulative shift in legislative culture. The original NDIS was founded upon the proposition that Australians with disability are entitled to the supports necessary to participate in society on an equal basis with others.

The Future Generations Bill increasingly frames those supports as expenditures requiring restraint. This shift has profound implications.

Rights become conditional.
Participation becomes contingent.
Independence becomes negotiable.
Supports become vulnerable to fiscal priorities. 20

The Committee should be cautious before endorsing a legislative framework that moves Australia away from the rights-based philosophy that underpinned creation of the NDIS. Financial sustainability is important. Human rights are indispensable. The former should support the latter. It should never replace it.

The Future Generations Bill Replaces Lifetime Certainty With Reassessment and

Insecurity

One of the most significant departures from the original design of the NDIS is the shift from lifetime certainty towards ongoing reassessment and uncertainty. The original NDIS was founded upon a simple proposition. Australians with permanent and significant disability should be able to rely upon the availability of appropriate supports over the course of their lives.

The purpose of the Scheme was not merely to provide funding. It was to provide certainty. Individuals and families were intended to have confidence that once permanent disability was established, supports would be available according to need and would not depend upon arbitrary funding cycles, changing political priorities or recurring battles for recognition. This principle was central to the recommendations of the Productivity Commission.

The Commission expressly stated that the financing mechanism supporting the NDIS must provide people with disability with certainty about receiving reasonable supports over their lifetimes. It further recognised that disability support should move away from the uncertainty associated with annual budget processes and the rationing that characterised the pre-NDIS system. The Commission’s vision was therefore not simply one of funding reform, but of security and predictability for people with disability and their families.

Prime Minister Gillard adopted that vision when introducing the original legislation. In her second reading speech she stated that the NDIS would provide people with disability with the care and support they require “over their lifetimes”. This was not a passing political statement. It was a fundamental description of the purpose of the Scheme and the social contract that Parliament was establishing with Australians with disability. The Future Generations Bill alters that bargain. Importantly, the amendments are expressed to apply to decisions made after commencement whether or not the person is already a participant.

The Bill introduces a series of provisions that increase the extent to which existing participants may be subject to reassessment under new legislative criteria. While the Government characterises these measures as clarifications and improvements, their cumulative effect is to reduce certainty and increase the extent to which participants remain vulnerable to future reassessment of matters that were previously regarded as settled.

The most significant example is found in Part 8 of Schedule 1, which introduces a new framework for determining whether an impairment is permanent.

Proposed subsection 24(5) provides that an impairment will not be regarded as permanent, or likely to be permanent, unless all appropriate treatment has been undertaken, any further treatment is unlikely to materially improve, reverse or alleviate the impairment, and the impairment is likely to persist for the person’s lifetime. Similar amendments are made to the early intervention pathway through proposed subsection 25(1B).

The Bill further introduces proposed section 25A, which defines “appropriate treatment”. Importantly, proposed subsection 25A(2) provides that treatment may constitute appropriate treatment regardless of whether a person’s individual circumstances restrict access to that treatment. The accompanying note expressly identifies financial circumstances and geographical location as examples of individual circumstances that may be disregarded when determining whether treatment is “appropriate”.

Under the original framework, permanence was primarily concerned with the nature of the impairment itself. Under the new framework, permanence becomes dependent upon whether all treatment regarded as appropriate has been undertaken. The focus shifts from the enduring nature of the disability to the availability and utilisation of treatment. The practical implications are substantial.

Many disabilities are permanent but may respond partially to treatment. Many participants experience fluctuating conditions that improve and deteriorate over time. Others may have access only to limited treatment options due to financial constraints, geographic isolation or the absence of suitably qualified practitioners. The new provisions create uncertainty regarding how permanence will be assessed in these circumstances and whether participants may be required to continually demonstrate that all appropriate treatment has been exhausted.

The significance of these amendments is amplified by the application provisions contained within the Bill. Item 94 provides that the amendments apply to decisions made after commencement

whether or not the individual is already a participant. The relevance of this provision cannot be overstated. The new permanence framework is not confined to future applicants. It is capable of affecting existing participants whenever a relevant decision is made after commencement.

The Government has repeatedly asserted that the Bill protects participants with permanent and significant disability. However, the legislative text demonstrates that the Bill establishes new criteria capable of being applied to existing participants through future decision-making processes. This is precisely the type of uncertainty that the original NDIS was designed to avoid.

The same concerns arise in relation to the new functional-capacity framework introduced by the Bill. Part 1 of Schedule 1 introduces provisions that permit functional-capacity assessments to be undertaken without regard to assistive technology, environmental modifications and personal support arrangements. The result is a model of disability assessment that focuses upon impairment in isolation rather than the interaction between impairment and support.

For many participants, the very purpose of supports is to mitigate functional limitations. Assessing functional capacity without reference to those supports risks producing outcomes that are disconnected from lived reality. More importantly, it creates additional pathways through which participants may be reassessed against criteria that did not exist when they entered the Scheme.

The Committee should also consider the cumulative effect of these reforms. Any individual amendment may appear modest when viewed in isolation. However, when the appropriate treatment provisions, functional-capacity provisions, reassessment mechanisms and sustainability measures are considered together, a clear pattern emerges. The Scheme moves away from certainty and towards conditionality. Eligibility becomes increasingly dependent upon ongoing assessment against evolving criteria. Participants who were previously entitled to regard their disability status as settled may face renewed scrutiny under legislative concepts that did not exist when they entered the Scheme. This outcome sits uneasily with the promises that accompanied the creation of the NDIS.

The Productivity Commission envisaged a system that would replace insecurity with certainty. Prime Minister Gillard promised a system that would provide support over a participant’s lifetime. The Future Generations Bill introduces mechanisms that make future access to support less certain than it was before.

The issue is not whether reassessment should ever occur. Clearly there must be mechanisms for addressing changes in circumstances and ensuring that supports remain appropriate. The issue is

whether the Bill alters the fundamental understanding upon which participants entered the Scheme. For many Australians with disability, the answer is yes.

The original NDIS promised certainty in place of crisis and security in place of rationing. The Future Generations Bill risks reintroducing the very uncertainty that the Scheme was originally created to eliminate.

The Expansion of Executive Power Through Delegated Legislation

A further concern arising from the Future Generations Bill is the increasing reliance upon delegated legislation to determine the practical operation of the NDIS. The original Scheme established participant rights and entitlements primarily through the Act itself. While subordinate legislation has always played a role, Parliament retained primary responsibility for defining the framework within which supports were assessed and provided.

The Future Generations Bill continues a trend towards increasingly significant decisions being determined through rules rather than primary legislation. This shift matters because delegated legislation receives substantially less parliamentary scrutiny than primary legislation. Rules may be amended more readily than Acts and are often subject to less public attention and debate.

The practical effect is that important questions affecting participant supports may increasingly be determined by executive decision-making rather than by Parliament. This concern is particularly significant in circumstances where rules may affect classes of supports or classes of participants. Rather than individual circumstances determining outcomes, there is an increased risk that cohort based approaches will influence access to support.

The Committee should carefully consider whether powers of this breadth are consistent with the original participant-centred design of the NDIS. The issue is not whether rules are necessary. Clearly they are. The issue is whether Parliament is retaining sufficient oversight over decisions that directly affect the lives of Australians with disability. The greater the reliance placed upon delegated legislation, the greater the importance of ensuring that those powers remain tightly constrained by the objects and principles of the Act.

Conclusion

The Future Generations Bill is presented as a measure that restores the NDIS to its original purpose. The evidence suggests otherwise. The original NDIS was established to replace a system characterised by rationing, uncertainty and crisis-driven responses. It was designed to provide people with disability with certainty, dignity, independence and support over their lifetimes. The Productivity Commission understood sustainability as a means of ensuring that those outcomes could be achieved. It did not regard sustainability as a justification for reducing supports or restricting access to the Scheme.

The Future Generations Bill fundamentally alters that balance. Throughout the Bill, financial sustainability is elevated as a central consideration. New permanence provisions, functional-capacity assessments, reassessment mechanisms and expanded rule-making powers collectively move the Scheme away from the certainty that participants were promised and towards a model in which support becomes increasingly contingent upon fiscal considerations.

The Bill also raises significant concerns regarding Australia’s obligations under the UNCRPD, including the rights to independent living, mobility, rehabilitation, participation and social protection. Several provisions create a risk that rights associated with independent living, mobility, participation and rehabilitation may be progressively limited in pursuit of expenditure restraint. The issue is not whether the NDIS should be financially sustainable. The issue is what sustainability means.

The Productivity Commission never suggested that sustainability should be measured solely by reference to expenditure. To the contrary, it recognised that disability supports generate substantial social and economic benefits and that the long-term costs of failing to provide support often exceed the cost of providing it. A scheme that reduces expenditure by reducing supports may improve budget outcomes while simultaneously undermining the very purpose for which the Scheme was created.

The Committee should therefore approach claims of sustainability with caution. The relevant question is not whether expenditure can be reduced. The relevant question is whether the NDIS continues to fulfil its purpose of supporting Australians with disability to live ordinary lives characterised by dignity, participation, independence and opportunity in accordance with the UNCRPD.

The central message of this submission is simple.

Financial sustainability does not override human rights. The purpose of the NDIS is not merely to manage disability. Its purpose is to sustain ability. When counting beans becomes more important than human beings, lives are lost.

Recommendations

The Committee should recommend that the Bill not proceed in its current form.
The Committee should remove the amendment to section 3(1)(d).
The Committee should recommend removal of provisions that permit support reductions based upon broad sustainability considerations without regard to individual need.
The Committee should recommend removal or substantial amendment of the “appropriate treatment” provisions contained in proposed sections 24(5), 25(1B) and 25A, particularly proposed s 25A(2), which permits “appropriate treatment” to be considered without regard to a participant’s financial circumstances or geographical location.
The Committee should recommend that existing participants not be reassessed against new permanence criteria introduced after they entered the Scheme.
The Committee should recommend that item 66 be struck out, so that participants’ plans are formulated in line with the objects and principles of the NDIS Act.
The Committee should recommend that any rule-making powers affecting participant entitlements be subject to enhanced parliamentary scrutiny, particularly by the Parliamentary Joint Committee on Human Rights, before the instrument comes into effect.
The Committee should recommend that financial sustainability be expressly defined to require consideration of social and economic benefits, avoided costs and participant outcomes.
The Committee should recommend the removal any amendments that make individual participants’ plans are subject to financial sustainability scrutiny and return financial sustainability to a scheme wide consideration, in conjunction with recommendation 8 above.
The Committee should recommend that all NDIS decision-making remain consistent with the objects and principles of the NDIS Act and Australia’s obligations under the UNCRPD.
The Committee should recommend that no participant support be reduced solely on the basis of cohort-based funding measures, support categories or expenditure targets.
The Committee should recommend that Parliament undertake a comprehensive review of the impact of the reforms on participant rights within two years of commencement.