News & Statements
Official statements, committee submissions, and public commentary from the National Lived Experience Commission.
Latest Updates
NLEC thanks participants, advocates, referral organisations and volunteers for mobilising at short notice. Watch the 22 October Senate hearing segment and read its formal Social Housing Submission 16.
Article, hearing video & Submission 16The Committee authorised NLEC's Social Housing submission for publication. It is now listed as Submission 16; NLEC subsequently participated in the 22 October 2026 hearing.
Read NLEC statementDaniel Vamplew and Eric Barrett-O'Keefe appeared before the Committee at Parliament House in Canberra. The hearing considered NLEC's evidence on NDIS governance, performance, safeguards and accountability.
View hearing recordNLEC made a submission on embedding lived-experience intelligence in NDIS governance, performance, safeguards and accountability.
Read official Parliament PDFThe Submission 1129 series, including supplementary submissions 1129.1–1129.3, addresses co-design, psychosocial disability and impacts on carers.
View official inquiry submissionsNLEC made a submission on lived-experience, essential-services, community and data-governance implications of emerging technology.
Read official Parliament PDFThe National Lived Experience Commission has provided a supplementary submission to the Senate Community Affairs Legislation Committee inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026. NLEC's submission has been formally accepted and published by the Committee Secretariat as Submission 1129. The Committee will consider the matters raised before it reports.
The National Lived Experience Commission (NLEC) is a registered national Australian charity with a recognised charitable purpose of advancing public debate. NLEC was established to convert lived experience into structured systems intelligence — identifying recurring patterns of preventable harm, governance failure and service-system dysfunction across Australia's social, health, justice, housing, disability and community service systems, and publishing evidence-based recommendations for reform.
NLEC is not a government agency, regulator, ombudsman or complaints body. Its authority rests in the quality of its evidence, the rigour of its methodology and the legitimacy of its public-benefit purpose.
346,000
people affected by the Bill
10/28
co-design score — Consultation Only
$13.2B
reduction in participation supports
4
recommendations to the Committee
NLEC assessed the process used to develop the NDIS Amendment Bill 2026 against its National Co-Design Standards Framework, based on publicly available information. The framework establishes seven standards that must be met for a process to constitute genuine co-design, each with minimum criteria and accountability indicators grounded in CRPD Article 4(3). Processes are scored on a 28-point scale:
Consultation Only
Co-Design Assessment Score — NDIS Amendment Bill 2026
This finding is consistent with evidence presented to the Committee by the Australian Federation of Disability Organisations (Submission 446), which argued that consultation occurred but genuine co-design did not, in breach of CRPD Article 4(3). The threshold for genuine co-design is 22/28.
Bill introduced 14 May 2026; Senate inquiry deadline 16 June 2026 — five weeks for consultation on legislation affecting 346,000 people. No evidence of involvement before key parameters determined.
No publicly available documentation of how lived experience input influenced the Bill's most significant provisions. $13.2B reduction in participation supports not subject to genuine co-design.
Some consultation processes included remuneration. Scale and accessibility insufficient to reach full diversity of affected people, particularly those with psychosocial disability.
No evidence of targeted recruitment of people with psychosocial disability, women carers, people in remote areas or people from CALD backgrounds. Explanatory memorandum acknowledges gendered impacts but no Gender Impact Assessment provided.
Some consultation documentation published. Full findings of consultation processes not publicly disclosed. No independent methodological review.
No evidence of structured feedback to participants on how their input influenced the Bill's provisions. No opportunity to respond to draft proposals before finalisation.
No co-design outcomes report published. Explanatory memorandum acknowledges some impacts but does not provide comprehensive account of how co-design shaped the legislation.
Scores: 1 = Not Met; 2 = Partially Met; 3 = Substantially Met; 4 = Fully Met. Based on publicly available information, subject to revision.
6.1 Social and Community Participation and Capacity Building Supports
NLEC's 2026 National Lived Experience Intelligence Report identifies the proposed reduction of Social and Community Participation and Capacity Building supports as the most significant threat to the wellbeing of people with psychosocial disability. The government's own modelling projects that $13.2 billion in savings — more than one-third of total savings — will come from this category. For people with psychosocial disability, these supports are often the primary mechanism through which people maintain community connection, manage their mental health and avoid crisis. Reduction of these supports is likely to generate significant downstream costs in mental health services, emergency departments, homelessness services and justice systems — costs not reflected in the Bill's financial modelling.
6.2 The Scale of Projected Participant Reduction
The government's own modelling projects that 241,000 people who join the Scheme before 1 January 2028 will be exited between then and 30 June 2031, and a further 105,000 people who would otherwise have been expected to access the Scheme will be denied entry. Total participant numbers will reach 598,000 by 30 June 2031, down from a pre-reform projection of 944,000. NLEC submits that the removal of 346,000 people from or denial of access to the NDIS represents a reform of extraordinary scale and consequence that should not proceed without genuine co-design.
6.3 The Absence of a Gender Impact Assessment
The Bill's own explanatory memorandum acknowledges that women are more likely to be affected by the Bill's changes, including through reduced paid work. More than twice as many primary carers are women as men, and 84.7% of primary carers for children with disability are women, many of whom live with disability themselves. NLEC submits that the Bill meets the government's own criteria for requiring a Gender Impact Assessment — and that none has been provided.
6.4 Fraud and Provider Integrity Measures
NLEC notes that fraud and provider integrity measures account for approximately $1.1 billion of the Bill's projected $38 billion in savings — under 3% of the total. This is a useful reality check against suggestions that fraud is a primary driver of the Scheme's costs. NLEC supports measures to address fraud and provider integrity, but submits that these should not be used to justify the scale of participant reduction projected under the Bill.
Genuine Co-Design Before Passage
The Committee recommend that the Bill not proceed in its current form until a genuine co-design process meeting the standards of CRPD Article 4(3) has been completed. This process should meet the minimum criteria of NLEC's National Co-Design Standards Framework, including early and sustained involvement, shared power in decision-making, fair remuneration, representative diversity, transparent methodology, feedback loops and public accountability for outcomes.
Independent Lived Experience Impact Assessment
The Committee recommend that an independent lived experience impact assessment of the Bill's provisions be commissioned before passage, with particular focus on: the impact of the reduction of Social and Community Participation and Capacity Building supports on people with psychosocial disability; the impact of projected participant reductions on people with complex and intersecting support needs; and the gendered impacts of the Bill on women carers.
Statutory Co-Design Requirement
The Committee recommend that the Bill be amended to include a statutory requirement for genuine co-design — meeting the standards of CRPD Article 4(3) — in the development of any subordinate legislation, guidelines or operational policies made under the Bill. This requirement should specify minimum standards for co-design processes, including the involvement of people with disability and their representative organisations from the earliest stages of development.
Adoption of National Co-Design Standards
The Committee recommend that the government adopt NLEC's National Co-Design Standards Framework as the basis for assessing co-design quality in future NDIS reform processes, and that the government publicly report against the framework's seven standards and 28-point assessment tool for all major NDIS reform processes.
"Lived experience is not symbolic consultation. It is operational intelligence. The people who know most about how the NDIS works — and where it fails — are the people who have lived inside it. Their evidence should have shaped this Bill. It did not."
Media enquiries
commissioner@nlec.auThe National Lived Experience Commission has provided a submission to the Senate Community Affairs References Committee inquiry into the Support at Home Program. NLEC submits that the Program is the most significant redesign of Australia's home-based care system in a generation and must not be assessed only as an aged-care funding model — it is a cross-system reform affecting some of Australia's most vulnerable people.
8
recommendations to the Committee
5
cross-system reform domains
Submission 21
Senate Committee registration
June 2026
submitted to the Committee
The Support at Home Program replaces the Home Care Packages Program and the Short-Term Restorative Care Programme, and will eventually absorb the Commonwealth Home Support Programme. NLEC submits that it should be understood not as an administrative reform but as a care system redesign — one that will affect hundreds of thousands of older Australians and people with disability who rely on home-based care to remain in their communities.
Using its National Co-Design Standards Framework, NLEC assessed the Program's development process and found it has not yet met the standards of genuine co-design — particularly in relation to early and sustained involvement, shared power in decision-making, and public accountability for outcomes.
Co-Payment Design and Hardship
The Program's co-payment model risks financial exclusion — that people who cannot afford co-payments will reduce or forgo care. Evidence from the NDIS, mental health system and pharmaceutical benefits system shows co-payments create barriers that fall most heavily on women, people with disability, people from CALD backgrounds, and people in rural and remote areas. Hardship provisions are only effective if they are easy to access, widely known, applied proactively, and designed with people who have lived experience of financial hardship.
Thin Markets and Service Access
The Program's market-based delivery model creates significant risks of thin market failure in rural, regional and remote areas. NLEC's 2026 Intelligence Report identifies thin markets as a significant barrier across multiple reform domains. The lived experience of thin markets in the NDIS — where participants in rural and remote areas frequently cannot access supports because there are no providers — provides a direct warning. NLEC calls for market stewardship functions, provider-of-last-resort arrangements, and flexible service delivery models.
Carers and the Informal Care System
The Support at Home Program does not exist in isolation from the informal care system. NLEC's 2026 Intelligence Report notes that more than twice as many primary carers are women as men, and many carers live with disability themselves. Reduction of formal care supports shifts caring responsibilities onto informal carers with consequences for their health, wellbeing, workforce participation and financial security. NLEC submits that carer support services must be integrated with the Program — not separate from it.
The NDIS–Aged Care Interface
People with disability who are ageing, and older people who acquire disability, frequently fall into gaps between the NDIS and the aged care system. NLEC submits that people with disability who are ageing should not be required to transition from the NDIS to the Support at Home Program if the NDIS better meets their needs. The principle of 'no worse off' must be applied.
Proactive Hardship Identification and Protection
Include a proactive hardship identification and referral mechanism, designed with people with lived experience of financial hardship, with provisions that are easy to access, widely known and applied proactively.
Market Stewardship and Provider-of-Last-Resort
Include a market stewardship function with clear responsibility for identifying and addressing thin markets, and provider-of-last-resort arrangements with specific funding for rural, regional and remote areas.
Carer Impact Assessment and Support Integration
Complete a carer impact assessment of the Program's co-payment and service access provisions before full implementation, and integrate carer support services with adequate, accessible respite care.
First Nations Self-Determination and Cultural Safety
Involve First Nations peoples as genuine partners in design and governance, support community-controlled organisations to deliver services, and develop culturally safe standards subject to independent monitoring.
NDIS–Aged Care Interface Resolution
Conduct a joint NDIS-aged care interface review before full implementation, publish findings, and apply the principle of 'no worse off' to people with disability who are ageing.
Permanent Lived Experience Governance Mechanism
Establish a permanent governance mechanism with genuine decision-making power, fair remuneration, and public reporting obligations — not a one-off consultation process.
Independent Lived Experience Monitoring
Subject the Program to independent lived experience monitoring by a body independent of government and providers, with annual public findings directed at people with the power to act on them.
Genuine Co-Design Before Full Implementation
Make full implementation contingent on completion of a genuine co-design process meeting NLEC's National Co-Design Standards Framework, with particular focus on co-payment design, thin markets, carers, First Nations services, and the disability-aged care interface.
"A care system that does not genuinely involve the people it is meant to serve in its design will not serve them well. That is not an opinion. It is the lesson of every royal commission, every parliamentary inquiry and every independent review that has examined Australia's care systems in the past two decades."
Media enquiries
commissioner@nlec.auThe Committee Secretariat has confirmed that Submission 1129 has been formally received and published on the Committee's public submissions register. The Committee will consider the matters raised in NLEC's submission before it reports.
Key Public Facts
Media enquiries
commissioner@nlec.auNLEC publishes public statements and committee submissions as part of its ACNC-registered charitable purpose of advancing public debate on lived experience reform.
National Lived Experience Commission • Registered Australian Charity • ABN 79 919 184 486
