Autistic adult's experience of fluctuating disability and inadequate supports (Participant experience)

Submission 546

Executive Summary

I am an autistic adult with psychosocial disability and an NDIS participant. My disability is highly context-dependent, fluctuating and often invisible during brief interactions or periods of relative stability.

On some days, I appear articulate, informed and capable. During periods of prolonged stress, uncertainty or cumulative overload, I can lose the ability to eat, drink, communicate effectively, maintain routines, self-manage medication or perform basic survival tasks. Both versions are me.

I live alone with no informal supports and no independence with driving or public transport. My functioning is significantly affected by autistic burnout, executive dysfunction, sensory dysregulation, prolonged recovery periods, severe social isolation and fluctuating capacity. I have been an NDIS participant since 2018. My primary disability is Autism Spectrum Disorder Level 2, and my secondary disability is psychosocial disability associated with Borderline Personality Disorder. I also have

longstanding diagnoses including Major Depressive Disorder, Obsessive Compulsive Disorder,

Complex Post-Traumatic Stress Disorder and Panic Disorder.

My lived experience spans almost two decades of interaction with mental health, disability and crisis systems, including repeated psychiatric hospitalisations, prolonged inpatient treatment, residential aged care placement at approximately 60 years of age, significant deterioration associated with inadequate support, and periods of prolonged autistic shutdown affecting communication, food and fluid intake and basic functioning.

I support efforts to improve the long-term sustainability, consistency, accountability and integrity of the National Disability Insurance Scheme (NDIS). I support appropriate safeguards, efforts to reduce fraud and improve consistency. My concern is not that reform is occurring.

My concern is whether the assumptions underpinning the proposed reforms adequately reflect the lived realities of participants whose functioning deteriorates gradually, privately, or only after prolonged cumulative stress.

I am making this submission to the Senate Inquiry regarding the NDIS (Securing the NDIS for Future Generations) Bill 2026 because I am concerned the proposed NDIS reforms may disproportionately affect participants whose disability cannot be accurately understood through isolated observations, standardised assessments, or assumptions that alternative supports exist and are accessible.

My concern is not theoretical. Under existing system pressures, prolonged uncertainty and inadequate or inconsistent supports, I have experienced:

• repeated psychiatric hospitalisation;

• prolonged inpatient treatment;

• institutional living within residential aged care;

• repeated severe autistic meltdowns;

• prolonged shutdown lasting approximately eight days;

• inability to maintain adequate food and fluid intake;

• inability to communicate;

• significant weight loss;

• deterioration associated with support instability, reassessment uncertainty and cumulative stress;

• suicidal crises and suicide attempts; and

• loss of independence and reduced participation.

Submission 546

I have learned that appearing functional in an assessment environment does not mean I am safe, stable or able to sustain functioning over time.

I am concerned that the proposed reforms, including increased reliance on standardised functional assessment, a reassessment burden, assumptions regarding Foundational Supports, and a greater emphasis on sustainability, may disproportionately disadvantage participants whose disability is fluctuating, masked, cumulative, and highly context-dependent. Core concerns

I am concerned the proposed amendments may:

• underestimate participants whose functional capacity fluctuates significantly over time;

• place excessive emphasis on observable functioning or standardised assessment without adequately recognising sustainability, usability or environmental context;

• assume participants can reliably access appropriate treatment despite workforce shortages, financial barriers and limited-service availability;

• interpret low support utilisation as reduced need rather than recognising barriers to participation, autistic burnout or deteriorating functioning;

• assume Foundational Supports and alternative systems exist and are accessible before participants transition away from NDIS-funded supports;

• inadequately recognise the impact prolonged uncertainty, reassessment burden and support instability may have on autistic and psychosocial disability cohorts;

• reduce supports facilitating social and community participation, increasing isolation and reducing inclusion; and

• overlook participants who become less able to advocate or seek help precisely when support needs become greatest.

My concerns arise from lived experience rather than theoretical assumptions.

Across approximately twenty years, periods characterised by absent or inadequate supports, reduced funding, support gaps, service instability and prolonged uncertainty have been associated with:

• repeated psychiatric hospitalisation;

• deterioration in mental health;

• prolonged shutdown;

• worsening social isolation;

• increased suicidality;

• reduced independence; and

• reduced community participation. Periods with greater support availability have been associated with:

• reduced psychiatric admissions;

• improved stability;

• improved ability to remain living within the community; and

• some increase in participation despite ongoing significant disability. Support did not remove disability; support often preserved fragile stability. Therefore, support effectiveness should not automatically become evidence that support is unnecessary. I am concerned that reforms may interpret periods of increased stability or participation as evidence of reduced need, without recognising the role that support itself may play in maintaining those outcomes.

I ask Parliament to consider: What occurs when participants become less able to explain deterioration, seek reassessment or advocate effectively for additional support.

Submission 546

My lived experience suggests that participants may become progressively less able to navigate systems precisely when their support needs are greatest because deterioration does not always increase visibility. Sometimes deterioration increases invisibility. Key amendment requests I respectfully request consideration of amendments that would:

1. Require assessment frameworks to consider:

• fluctuating functioning;
• masking;
• environmental context;
• cumulative stress; and
• sustainability and usability of functional capacity over time.

2. Delay reliance on Foundational Supports until those supports demonstrably exist, are funded, accessible and independently evaluated.

3. Interpret utilisation data cautiously, recognising that low utilisation may reflect barriers to access or worsening functioning rather than reduced need.

4. Protect supports facilitating social and community participation, recognising participation as fundamental to inclusion and wellbeing rather than discretionary.

5. Monitor unintended consequences of reform, including:

• deterioration;
• prolonged shutdown;
• suicidality;
• crisis presentations;
• hospitalisation;
• nutritional compromise;
• increased isolation; and
• reduced participation.

6. Recognise that support may preserve functioning rather than increase it, and that maintaining fragile stability may itself represent a meaningful outcome.

I ask Parliament to consider whether reforms designed around sustainability, standardisation and administrative efficiency adequately protect participants whose disability is cumulative, fluctuating, masked or difficult to quantify through threshold-based systems.

My concern is not whether participants survive, but what happens to participants between crisis points and whether support systems recognise deterioration before collapse occurs, because support should not only prevent crisis. Support should also preserve inclusion, participation, stability and the possibility of a sustainable life.

Submission 546

Timeline of Disability, Supports and Deterioration (2008–2026)

2008: Early Diagnoses and Absence of Support

I was diagnosed with:

• Borderline Personality Disorder (BPD);
• Major Depressive Disorder (MDD). Significant mental health difficulties were recognised. Despite substantial impairment, there were no meaningful disability supports available. Early intervention and sustained disability support were absent.

2011: Increasing Complexity

Complex Post-Traumatic Stress Disorder (Complex PTSD) was added to my diagnoses.

My presentation became increasingly complex, with ongoing deterioration occurring in the absence of consistent disability supports.

2013: Mental Health Detention and Prolonged Hospitalisation

I was detained under Mental Health legislation and experienced approximately three months of psychiatric hospitalisation. This represented a significant deterioration requiring intensive intervention.

2014–2016: Repeated Hospitalisation and Reliance on Crisis Systems

During this period, I experienced:

• multiple psychiatric hospitalisations;
• repeated reliance upon public mental health systems;
• ongoing instability; and
• limited sustained disability supports. I ask Parliament to consider: What is the cost to public systems when participants receive support only after repeated crises, hospitalisation or severe deterioration?

Because costs do not necessarily disappear, sometimes costs shift to:

• hospital systems;
• emergency systems;
• community services;
• families; and
• participants themselves.

2016–2018: Residential Aged Care Following Severe Deterioration

Following medication-related deterioration associated with lithium toxicity, I was deemed unsafe to remain living at home and transferred into residential aged care despite being approximately 60 years old. I remained in residential aged care for approximately two years.

Submission 546

This period included:

• institutional living;
• limited autonomy;
• periods of autistic meltdowns and shutdown managed through isolation;
• reliance on general residential care rather than disability-specific supports; and
• ongoing mental health treatment without comprehensive disability support. During this period, I continued paying substantial private health insurance premiums and attended multiple psychiatrists and psychologists. Despite specialist treatment, significant deterioration and loss of independence continued. Eventually, ongoing treatment costs became financially unsustainable. This experience shaped my understanding that:

Treatment and disability support are not interchangeable.

Despite access to multiple treating professionals, deterioration, institutionalisation and reduced independence still occurred.

I ask Parliament to consider: What options existed for autistic adults with psychosocial disability experiencing severe deterioration prior to meaningful disability support?

2018: Entry to NDIS

I became an NDIS participant in Queensland. This represented the beginning of access to more structured disability support. It is important to note that support did not remove disability.

However, over time, periods with greater support availability were associated with:

• reduced psychiatric admissions;
• increased stability;
• improved ability to remain living within the community; and
• some improvement in participation despite ongoing significant impairment. Improvement did not mean recovery, nor did it mean independence from support. Support often preserved fragile stability rather than removing impairment.

2020–2022: COVID-19, Reduced Supports and Service Instability

During this period:

• COVID-19 significantly altered opportunities for community participation;
• NDIS funding was substantially reduced compared with previous plans;
• Improved Daily Living funding reduced significantly;
• Core supports reduced to fewer than approximately three hours per week;
• reduced funding continued across subsequent plans;
• workforce instability increased;
• provider viability declined; and
• support quality became increasingly inconsistent. For participants with already limited participation, these changes reduced opportunities to maintain fragile community connections and functioning. I am concerned that periods of low utilisation may be interpreted administratively as evidence that supports were unnecessary or goals achieved.

Submission 546

My experience suggests low utilisation may instead reflect:

• insufficient funding;
• restricted service availability;
• participation barriers;
• environmental disruption;
• inability to access support; or
• deteriorating functioning.

2023–2025: Increased Supports and Ongoing Vulnerability

Following Internal Review processes, additional Capacity Building supports and support worker hours were reinstated. A later plan included increased Capacity Building and Core Supports.

During periods with greater support availability:

• psychiatric hospitalisations reduced;

• stability improved;

• participation increased to some extent. However, functioning remained episodic and heavily affected by:

• sensory overload;

• communication difficulties;

• fluctuating capacity;

• social isolation; and

• prolonged recovery following stress. Support preserved stability; it did not remove vulnerability.

Late 2025: Severe Mental Health Deterioration

In late December 2025, I experienced significant deterioration in mental health, became suicidal and required psychiatric hospitalisation. The treating psychiatrist considered existing NDIS funding inadequate and supported applications for recognition of additional secondary disabilities and increased supports.

Those applications were unsuccessful.

An NDIS Local Area Coordinator advised that I would require:

• a Functional Capacity Assessment; and
• a Change in Situation application to seek additional supports.

My experience has been that worsening disability and increasing support needs do not necessarily result in increased support.

January 2026: Severe Crisis and Suicide Attempts

January 2026 involved:

• autistic burnout - severe crisis;
• suicide attempts;
• hospital presentation; and

Submission 546

• loss of trust in systems.

Early 2026: Progressive Deterioration Under Uncertainty

By early 2026, cumulative pressures continued.

These included:

• repeated uncertainty regarding supports;
• concerns regarding reassessment;
• fear associated with NDIS changes;
• Scheme-related stress;
• increasing exhaustion; and
• reduced capacity to recover. The deterioration was cumulative rather than immediate.

Over time, I experienced:

• increasing meltdowns;
• worsening shutdowns;
• reduced intake;
• weight loss;
• impaired functioning; and
• increasing difficulty maintaining basic daily living tasks. Much of this deterioration remained invisible externally, while I often continued to appear capable.

March–April 2026: Prolonged Shutdown and Loss of Basic Functioning

By late March 2026, I had reached my limit, where I experienced a prolonged shutdown lasting approximately eight (8) days.

During this period, I lost the ability to:

• maintain adequate food and fluid intake;
• communicate effectively; and
• sustain basic functioning. I largely stopped being able to live; I was basically “existing”.

Recovery required restrictive internal safety strategies and gradual restoration of communication and executive functioning. This was not a temporary period of overwhelm. It represented profound deterioration.

2026: Current Circumstances

Current circumstances include:

• increased meltdowns;
• prolonged shutdown;
• significant weight loss;
• increased suicidality;
• severe social isolation;
• autistic burnout;
• fluctuating functioning; and

Submission 546

• deterioration associated with prolonged uncertainty. My concern is not whether deterioration can occur.

My concern is: What happens when support is reduced, uncertainty increases, and participants progressively lose the capacity to seek help before systems recognise risk?

Reflection: The Difference Between Surviving and Sustaining

Throughout my life, I have survived:

• repeated deterioration;
• psychiatric hospitalisation;
• institutional living;
• prolonged shutdown;
• suicidal crisis; and
• loss of independence. Survival should not automatically be interpreted as evidence that support was unnecessary.

Because survival and sustainable functioning are not the same.

Nor are:

• survival and inclusion;
• survival and wellbeing; or
• survival and participation. I ask Parliament: Should disability systems be judged only by whether people survive?

Support should not merely prevent a crisis but also help people remain safe, included, connected, and able to sustain functioning over time.

Support History and NDIS Funding Changes

My experience with NDIS funding since entering the Scheme in 2018 has been characterised by significant fluctuations in support levels despite persistent or worsening disability-related impairment.

My support needs have not remained static. However, increases or decreases in funding have not always appeared to correspond with changes in disability severity, cumulative deterioration or the practical realities of living with Autism Level 2 and psychosocial disability.

Over time, my plans have varied considerably.

At one point, approximately two-thirds of my original funding was removed. Subsequent plans largely maintained these reduced levels of support despite ongoing impairment and fluctuating capacity.

Following an Internal Review process, additional Capacity Building supports and support worker hours were reinstated. A later plan included increased Capacity Building and Core Supports over a two-year period.

Periods with increased support availability were associated with:

Submission 546

• reduced psychiatric admissions;
• improved stability;
• improved ability to remain living independently within the community; and
• some increase in participation despite ongoing significant disability. However, support did not remove disability; support frequently preserves fragile stability.

I am concerned that improvements associated with support may later be interpreted as evidence that support is unnecessary. My experience suggests that support often maintains functioning that would otherwise deteriorate.

Reduced Funding Does Not Necessarily Mean Reduced Need

During periods of significantly reduced funding, the practical consequences extended beyond fewer support hours.

Reduced support affected:

• access to community participation;

• opportunities to maintain routines;

• ability to manage cumulative stress;

• practical assistance with daily tasks; and

• maintenance of fragile stability. I am concerned periods of lower utilisation may be interpreted administratively as:

• goals achieved;

• reduced need; or

• evidence support is unnecessary. My experience suggests low utilisation may instead reflect:

• autistic burnout;

• worsening functioning;

• inability to engage;

• support shortages;

• environmental barriers;

• reduced capacity to organise or attend services; or Reduced utilisation and reduced need are not necessarily the same.

Impact of COVID-19 and Service Instability (2020–2022)

The COVID-19 period coincided with substantial reductions in the availability of support and increased instability across service systems.

During this period:

• Improved Daily Living funding reduced significantly;
• Core supports reduced to fewer than approximately three hours per week;
• reduced funding continued across subsequent plans;
• participation opportunities reduced;
• service providers experienced instability;
• workforce shortages increased; and
• support quality became increasingly inconsistent.

Submission 546

For participants already experiencing limited participation, reduced community access and fluctuating functioning, these changes compounded existing vulnerability.

Periods of low participation during this time should not automatically be interpreted as evidence that supports were unnecessary.

Current Funding and Support Availability

My current NDIS funding provides limited practical supports.

Current supports include:

• assistance with grocery shopping;
• collection of staged weekly medication due to overdose risk;
• gentle community activities such as walking;
• support with home and garden maintenance;
• occasional low-demand activities supporting engagement; and
• limited support worker assistance. My Improved Daily Living funding is currently minimal and largely sufficient only to enable completion of a Functional Capacity Assessment. This creates a paradox:

I have been advised that additional evidence is required to demonstrate need, while available funding is insufficient to obtain meaningful therapeutic support beyond assessment itself.

Functional Capacity Assessments and Access to Support

Following psychiatric hospitalisation in late 2025, a treating psychiatrist considered my existing supports inadequate and supported recognition of additional disability-related needs. Those applications were unsuccessful.

I was subsequently advised that obtaining increased support would require:

• completion of a Functional Capacity Assessment; and
• submission of a Change in Situation request. I am concerned participants may be required to repeatedly prove disability or impairment across decades despite longstanding diagnoses and extensive histories of deterioration.

I ask Parliament to consider: What is the cumulative impact of requiring participants to repeatedly demonstrate impairment while simultaneously experiencing deterioration or reduced capacity to advocate?

The Relationship Between Support and Outcomes

My experience suggests support does not remove disability.

Support may:

• reduce crisis;

• increase stability;

• improve opportunities for participation; and

• help maintain independence. However, improvement does not necessarily mean:

• recovery;

Submission 546

• absence of disability;
• reduced vulnerability; or
• independence from support. This distinction matters because support effectiveness should not automatically become evidence that support is unnecessary.

Support as Prevention Rather Than Crisis Response

Looking across my history, periods characterised by:

• reduced funding;

• absent supports;

• prolonged uncertainty; or

• inadequate practical assistance have been associated with:

• increased deterioration;

• psychiatric hospitalisation;

• institutionalisation;

• prolonged shutdown;

• increased suicidality; and

• reduced participation. Periods with greater support availability have generally been associated with greater stability.

I ask Parliament to consider: Should support systems intervene only after deterioration becomes severe, or should supports be recognised as preventing deterioration before a crisis occurs? Because support may not only increase participation. It is important to remember that support may prevent collapse.

How Supports Changed Outcomes (Fragile Stability)

I recognise that support does not remove disability.

My experience suggests support may improve stability, reduce crisis and increase opportunities for participation while significant impairment remains.

Following access to more structured disability supports through the NDIS, periods of greater support availability were associated with:

• reduced psychiatric hospitalisations;
• increased stability;
• improved ability to remain living within the community;
• increased capacity to complete essential tasks; and
• some improvement in participation despite ongoing significant disability. However, improvement did not mean recovery. Improvement did not mean absence of disability, independence from support or reduced vulnerability to deterioration.

This distinction matters.

Support Preserved Functioning Rather Than Removed Impairment

Submission 546

My experience suggests support for the maintenance of functioning that may otherwise have deteriorated.

Support contributed to my ability to:

• remain living independently rather than in institutional settings;

• access grocery shopping and essential supplies;

• manage practical daily living tasks;

• attend appointments;

• maintain some degree of community participation; and

• reduce cumulative stress associated with unsupported functioning. However, significant disability remained, and participation continued to be limited and episodic due to ongoing challenges associated with:

• sensory overload and overwhelm;

• communication difficulties;

• difficulties interpreting social expectations and cues;

• rejection sensitivity;

• withdrawal associated with overload;

• fluctuating functioning; and

• prolonged recovery following cumulative stress. Support improved opportunities; however, it did not remove barriers.

Stability Does Not Mean Recovery

I am concerned that periods of relative stability may be interpreted as evidence that the disability impact has reduced. My experience suggests the opposite may sometimes occur.

Periods of apparent stability may reflect:

• effective support;
• reduced environmental demands;
• increased predictability;
• successful adaptation; or
• substantial effort required simply to maintain baseline functioning. Stability may therefore indicate that support is working rather than that support is unnecessary, because support effectiveness should not automatically constitute evidence that support is no longer required.

The Relationship Between Support and Crisis Prevention

Looking across my history, periods characterised by:

• inadequate supports;

• reduced funding;

• prolonged uncertainty;

• cumulative stress; or

• support instability have generally been associated with:

• increased deterioration;

• worsening mental health;

• prolonged shutdown;

• reduced participation;

Submission 546

• suicidal crisis;
• hospitalisation; and
• loss of functioning. By contrast, periods with more consistent support have generally been associated with greater stability and reduced crisis. Therefore, support did not eliminate vulnerability. Support appeared to reduce the frequency or severity of deterioration.

Support and Independence Are Not Opposites

My experience suggests that disability supports did not create dependence.

Support frequently enabled maintenance of:

• independence;

• community participation;

• basic daily functioning; and

• reduced reliance on crisis systems. Without adequate support, greater reliance may shift elsewhere:

• psychiatric services;

• emergency systems;

• inpatient care;

• institutional settings; or

• unsupported deterioration. I ask Parliament to consider: How will reforms distinguish between support for maintaining independence and support being interpreted as dependency?

The Cost of Fragile Stability

My current circumstances demonstrate that stability can remain fragile despite years of engagement with systems.

I continue to experience:

• autistic burnout;
• fluctuating functioning;
• severe social isolation;
• prolonged shutdown;
• sensory dysregulation;
• executive dysfunction; and
• periods of significant deterioration. The presence of support has not removed disability.

Support has often enabled survival, reduced crisis and preserved fragile stability.

I ask Parliament to consider: Whether maintaining fragile stability may itself represent a meaningful and successful outcome within disability systems.

Because: maintaining stability in the presence of significant disability is not failure. Sometimes maintaining stability is the achievement.

Submission 546

Reflection: Improvement Does Not Mean Recovery

My experience suggests that support may improve stability and reduce the risk of crisis while substantial impairment remains.

Improvement does not necessarily mean:

• recovery;
• absence of disability;
• reduced vulnerability; or
• independence from support. I ask Parliament: How will systems distinguish between a genuine reduction in disability impact and functioning maintained because appropriate supports remain available?

Because support effectiveness should not automatically count as evidence, support is unnecessary, and preserving fragile stability may itself be one of the most important functions it provides.

Legislative Analysis of Proposed Bill

I support efforts to improve the sustainability, consistency and integrity of the National Disability Insurance Scheme (NDIS). I recognise the Scheme faces genuine financial pressures and implementation challenges.

However, I am concerned some proposed amendments may unintentionally disadvantage participants whose disability is fluctuating, cumulative, context-dependent or characterised by periods of reduced ability to communicate, advocate or engage with systems.

My concerns are not theoretical.

They arise from the lived experience of prolonged deterioration, psychiatric hospitalisation, institutionalisation, autistic shutdown, fluctuating functioning and periods where support is reduced while vulnerability increases.

1. Defining Functional Capacity and Strengthening Links Between Impairment and Supports

Relevant proposed changes:

Schedule 1, Part 1 — Defining Functional Capacity

Schedule 1, Part 3 — Strengthen link between impairment and need for support, including:

• repeal of subsection 32K(3A); and
• amendment to paragraph 34(1)(aa) replacing “arising from an impairment” with “arising directly from an impairment or impairments”

Submission 546

The Explanatory Memorandum states that these changes seek to strengthen the direct links between support needs and eligible impairments and to reduce the scope for broad interpretation.

Concern:

I am concerned that strengthening requirements that supports arise directly from eligible impairments may underestimate participants with:

• multiple interacting disabilities;
• Autism with psychosocial disability;
• cumulative impairment;
• fluctuating functioning; or
• complex presentations where support needs arise through interaction between conditions. My disabilities do not operate independently.

Functional impairment often emerges through interaction between:

• Autism;
• Complex PTSD;
• executive dysfunction;
• sensory dysregulation;
• prolonged burnout;
• psychosocial disability; and
• cumulative stress. I am concerned that requiring support needs to arise directly from specific impairment risks, fragmenting disability into separate components, where real-world impairment is cumulative and interconnected.

I ask Parliament: How will systems recognise disability that emerges through interaction between multiple impairments rather than an isolated diagnosis?

2. Functional Capacity, Usability and Sustainability The Bill introduces a more consistent approach to assessing functional capacity. I am concerned that discussions regarding functional capacity may unintentionally assume a demonstrated ability = accessible ability = sustainable ability

My experience suggests these are different. I may possess capacity, and I may demonstrate capacity.

I may still be unable to:

• sustain capacity under cumulative stress;

• access capacity during prolonged shutdown;

• maintain functioning over time. This distinction matters because disability may affect:

• when capacity is available;

• whether capacity remains usable; and

• how long functioning can be sustained. I ask Parliament:

Submission 546

How will assessment frameworks distinguish between occasional capacity and functioning that is usable, sustainable and maintainable over time?

Because occasional ability and reliable ability are not necessarily the same.

3. Limiting Unscheduled Reassessments and Repeated Evidence Burden Relevant provisions:

Schedule 1, Part 2 — Limit unscheduled plan reassessments

Changes require significant and ongoing alterations in functional capacity or substantial reductions in the ability to perform daily activities before reassessment thresholds are met.

Concern:

I am concerned participants may be required to repeatedly demonstrate deterioration despite:

• longstanding diagnoses;

• extensive clinical histories;

• previous FCA evidence;

• repeated crises. My lived experience suggests deterioration may reduce:

• communication;

• intake;

• executive functioning; and

• ability to advocate. Participants may become less able to seek reassessment precisely when support needs increase.

I ask Parliament: How will reforms protect participants who become less visible as they become more unwell?

Because deterioration does not always increase visibility. Sometimes deterioration increases invisibility.

4. Plan Suspension, Non-Contact and Participant Revocation Relevant provisions:

Schedule 1, Part 7 — Plan suspension

Examples in the Explanatory Memorandum describe participants whose plans may be suspended or revoked following periods of non-contact.

Concern:

I am deeply concerned these provisions may disproportionately affect participants experiencing:

• autistic shutdown;
• severe burnout;
• psychiatric crisis;
• prolonged withdrawal; or

Submission 546

• communication impairment. My history includes periods where:

• I stopped communicating;

• I lost the capacity to respond;

• functioning deteriorated severely. Non-response did not indicate reduced need; non-response indicated increasing impairment.

I ask Parliament: How will systems distinguish between disengagement and severe deterioration?

5. Foundational Supports and Alternative Systems Relevant changes: The Bill tightens access to supports that may already exist elsewhere or through other systems.

Concern:

I am concerned that participants may lose access to NDIS supports before alternative systems demonstrably exist, are funded, and are accessible.

My experience suggests:

Treatment ≠ disability support. Mental health systems ≠ disability support. Hospitalisation ≠ community support.

I ask Parliament: What protections exist if participants transition away from NDIS before Foundational Supports operate effectively?

6. Automation of Administrative Decisions Relevant provisions:

Schedule 3, Part 2 — Automation of administrative action (sections 59B–59D).

These permit certain administrative actions via computer systems under specified conditions.

Concern:

I am concerned automation may disproportionately disadvantage participants whose disability is:

• fluctuating;
• context-dependent;
• cumulative; or
• poorly captured through objective indicators. My experience suggests disability often becomes most severe when externally measurable indicators become least visible.

Submission 546

I ask Parliament: How will automated systems recognise invisible deterioration, fluctuating capacity and cumulative burden?

7. Support Determinations and Reduced Funding Relevant provisions:

Support determinations may reduce funding while requiring consideration of participant safety. Funding may remain below actual support costs.

Concern:

I am concerned that support reductions may be interpreted primarily in terms of sustainability objectives, without adequate consideration of the cumulative impact on participants.

Support may preserve fragile stability.

Reduced support may increase:

• crisis;
• deterioration;
• hospitalisation;
• suicidality; and
• institutionalisation. The absence of support may shift costs rather than eliminate them.

8. Social and Community Participation I am concerned that reforms insufficiently recognise social and community participation as protective rather than discretionary. Reduced participation may increase:

• isolation;
• deterioration;
• withdrawal; and
• crisis. I ask Parliament: Does reducing support for participation risk increasing segregation and invisibility for disabled Australians?

Reflection: Sustainability Compared With What?

The Bill repeatedly references:

• sustainability;
• cost growth;
• restoring original intent. I respectfully ask Parliament to consider: Compared with what should disability support costs be measured?

Submission 546

Because costs do not necessarily disappear when support is reduced. Sometimes costs reappear through:

• hospitalisation;
• institutional care;
• emergency systems;
• crisis intervention;
• loss of independence. The absence of support may shift costs rather than eliminate them.

Overall Position

I support reform.

I do not support reform that assumes:

• capacity is constant;
• deterioration is visible;
• participants can always advocate;
• treatment replaces disability support; or
• support reductions occur without consequence. My concern is not whether the NDIS should be sustainable. My concern is whether sustainability measures adequately protect participants whose disabilities are cumulative, fluctuating, and difficult to quantify, because support should not merely prevent crisis. Support should preserve inclusion, participation, stability and sustainable living.

Functional Capacity vs Usability vs Sustainability

I am concerned that discussions regarding disability and functional capacity may unintentionally assume that demonstrating an ability means that ability can be accessed, sustained or used consistently over time.

My experience suggests these concepts are different:

• I may possess capacity.
• I may demonstrate capacity.
• I may still be unable to:
• sustain capacity under cumulative stress;
• access capacity during prolonged shutdown;
• use capacity consistently across environments;
• maintain functioning without support; or
• reliably perform activities over time. This distinction matters because disability may not only affect what a person can do.

Disability may affect:

• when capacity is available;
• whether capacity remains accessible;
• how long the capacity remains usable; and
• whether functioning can be sustained repeatedly without deterioration.

Capacity Does Not Necessarily Equal Usability

Submission 546

I may demonstrate ability during:

• assessments;

• structured appointments;

• periods of temporary stability; or

• environments with reduced demands. However, demonstrating capacity in one context does not necessarily mean I can:

• repeat that activity consistently;

• perform it under cumulative stress;

• sustain it over weeks or months; or

• maintain functioning without significant deterioration elsewhere. For example:

I may communicate effectively in an assessment.

I may subsequently experience:

• shutdown;
• exhaustion;
• sensory overload;
• impaired executive functioning; or
• prolonged recovery. The assessment may capture capacity at a moment while failing to capture it over time.

Sustainability Is Different From Demonstration

My experience suggests that functioning often entails cumulative costs, such as the costs of making activities possible. Unfortunately, they may not be sustainable.

The question may therefore not only be: Can this person perform the activity?

The question may also be:

At what cost? For how long? With what recovery burden? What deteriorates elsewhere?

Because functioning maintained through unsustainable effort may eventually result in:

• burnout;
• withdrawal;
• shutdown;
• reduced intake;
• increased suicidality; or
• loss of functioning.

Submission 546

The Relationship Between Capacity and Support

Support frequently changes what becomes possible.

My experience suggests support may:

• preserve usable capacity;
• reduce cumulative stress;
• increase predictability;
• improve sustainability; and
• reduce deterioration. This does not necessarily indicate reduced disability. Sometimes support maintains access to capacity that would otherwise become unavailable.

This distinction matters because support effectiveness should not automatically become evidence that support is unnecessary.

Masking and Fluctuating Disability

I am concerned that participants with Autism and psychosocial disability may demonstrate capacity while masking significant impairment.

My experience suggests disability may remain partially hidden because:

• communication remains possible;

• insight remains intact; or

• functioning appears preserved externally. Meanwhile:

• recovery periods lengthen;

• stress accumulates;

• shutdown increases; and

• functioning becomes progressively less sustainable. I ask Parliament: How will systems distinguish between sustainable functioning and functioning maintained through masking, adaptation or cumulative self-sacrifice?

Relevant Legislative Changes

Schedule 1, Part 1 — Defining Functional Capacity

The Bill introduces an agreed definition of functional capacity intended to improve consistency in determining access and support needs. I support greater consistency; however, I am concerned that it may not yield accuracy when disability fluctuates significantly. Consistency and accuracy are not necessarily the same.

Schedule 1, Part 2 — Alterations in Functional Capacity

The Bill requires that alterations in functional capacity be significant and ongoing, and linked to a substantial reduction in the ability to perform daily activities.

My concern is that deterioration may occur through:

• cumulative stress;

Submission 546

• repeated overload;
• burnout;
• progressive shutdown; or
• fluctuating functioning before becoming recognisable as significant and ongoing.

Participants may therefore experience profound deterioration before systems recognise increased need.

Schedule 1, Part 3 — Supports Must Arise “Directly” From Impairment

The Bill strengthens requirements that support needs that arise directly from an impairment or impairments.

My concern is that this may underestimate disability where:

• multiple impairments interact;

• functioning fluctuates;

• cumulative burden develops across conditions. For participants with Autism and psychosocial disability, impairment may emerge not from one diagnosis alone but through interaction between:

• sensory dysregulation;

• executive dysfunction;

• trauma;

• social isolation;

• burnout; and

• cumulative stress. Schedule 4 — Assessments and Support Needs

Proposed subsection 32L(4) specifies what information assessments must consider, while subsection 32L(4A) determines who may undertake assessments.

I ask Parliament: How will assessment frameworks distinguish between demonstrated capacity and sustainable functioning?

Because these are not necessarily equivalent.

Reflection: Capacity Without Sustainability May Still Produce Deterioration

My lived experience suggests that capacity alone may be an insufficient measure of the impact of disability. The more important question may sometimes be:

Can functioning be sustained safely over time without deterioration?

Because maintaining functioning through unsustainable effort may eventually result in:

• crisis;
• hospitalisation;
• prolonged shutdown;

Submission 546

• institutionalisation; or
• loss of independence.

Questions for Parliament

I respectfully ask Parliament to consider:

1. How will assessment systems distinguish between:

• demonstrated ability;
• usable ability; and
• sustainable ability?

2. How will fluctuating disability be recognised where functioning varies significantly across time or environments?

3. How will systems identify participants whose deterioration becomes less visible as functioning declines?

4. How will supports be protected where they preserve sustainability rather than increase capacity?

5. The conclusion is not whether functional capacity should be considered. My concern is whether:

• Functional capacity, usability and sustainability are being treated as interchangeable concepts when lived experience suggests they are not.

• Because disability may not only affect:

• What a person can do, but also:

• whether they can continue doing it safely, repeatedly and without collapse.

• And those differences may determine whether participants remain stable, deteriorate gradually or reach crisis before systems respond.

Foundational Supports Risks

I support efforts to improve disability supports outside the NDIS and recognise that not all disability related needs should necessarily fall within a single national scheme.

However, I am concerned participants may lose access to NDIS-funded supports before alternative systems, including Foundational Supports, demonstrably exist, are adequately funded, consistently delivered and accessible in practice. My concern is not theoretical; it arises from lived experience.

My Experience Before Meaningful Disability Supports

Before receiving structured disability supports, my experience included:

• repeated psychiatric hospitalisation;
• prolonged deterioration;
• institutionalisation within residential aged care;
• loss of independence;
• severe social isolation;
• cumulative deterioration; and
• increasing reliance upon crisis systems. I ask Parliament to consider: What occurs when disability support is absent, but disability remains?

Because impairment does not disappear when support disappears.

Submission 546

Treatment Is Not the Same as Disability Support

My experience suggests:

Mental health treatment ≠ disability support

During periods of significant deterioration, I maintained engagement with:

• psychiatrists;

• psychologists; and

• medical treatment. Despite this, deterioration continued where I was ultimately placed in residential aged care despite being approximately 60 years old. This experience shaped my understanding that:

• Clinical treatment and practical disability support perform different functions

• Treatment may address symptoms.

• Disability support may maintain:

• independence;

• community participation;

• routines;

• practical functioning; and

• protection against cumulative deterioration. These functions are not interchangeable.

Relevant Legislative Changes

Schedule 1 — Supports More Appropriately Provided by Other Systems

The proposed reforms strengthen requirements that NDIS supports should not fund services more appropriately provided through mainstream or alternative systems. The Explanatory Memorandum emphasises restoring boundaries between NDIS and other service systems.

I support clear boundaries where alternative systems exist and function effectively.

My concern is: What protections exist where those systems are unavailable, inconsistent or inaccessible?

Risk: Assumption That Foundational Supports Already Exist

I am concerned reforms may assume Foundational Supports:

• exist nationally;

• operate consistently across States and Territories;

• possess adequate workforce capacity;

• are accessible for autistic adults and psychosocial disability cohorts; and

• provide continuity equivalent to existing supports. My understanding is that many proposed Foundational Supports remain:

• undefined;

• inconsistently designed;

• dependent upon intergovernmental agreements; or

• unavailable in practice.

Submission 546

Participants may therefore face uncertainty regarding:

• eligibility;
• accessibility;
• continuity; and
• quality.

Geographic Variation and Inconsistent Service Availability

I am concerned that disability support may increasingly depend upon where a participant lives rather than what support they require.

This creates risk of:

• unequal access;
• inconsistent eligibility;
• service gaps; and
• reduced continuity. Participants experiencing severe disability should not experience markedly different support availability depending upon State or Territory implementation.

The Risk of Falling Between Systems

My lived experience suggests deterioration often occurs between systems. Examples include:

• disability systems;

• mental health systems;

• hospital systems;

• aged care systems; and

• community services. Participants may become:

• too disabled for mainstream systems;

• insufficiently supported by disability systems; and

• increasingly reliant upon crisis intervention. I ask Parliament:

How will reforms prevent participants from falling between NDIS, mental health and Foundational Support systems?

Foundational Supports and Social Participation

I am concerned that social and community participation may be interpreted as discretionary rather than protective.

For participants with Autism and psychosocial disability, participation may support:

• regulation;

• routine;

• connection;

• reduced isolation; and

• maintenance of functioning. Reduced participation may increase:

• withdrawal;

Submission 546

• deterioration;
• crisis;
• suicidality; and
• invisibility. I ask Parliament: Does reducing support for participation risk increasing segregation rather than inclusion?

Because exclusion does not necessarily reduce the impact of disability.

Sometimes exclusion increases deterioration.

Uncertainty as a Source of Deterioration

I am concerned that the uncertainty surrounding future support may itself produce harm.

My lived experience suggests prolonged uncertainty contributes to:

• increased anxiety;
• cumulative stress;
• autistic burnout;
• worsening shutdown;
• reduced functioning; and
• increased vulnerability. Participants may therefore experience deterioration before any actual reduction occurs.

The anticipation of losing support may itself become harmful.

Foundational Supports and Participants With Fluctuating Disability

I am concerned that participants whose disability fluctuates significantly may be disproportionately affected where:

• support thresholds become narrower;
• access requires active self-advocacy;
• deterioration reduces communication capacity; or
• systems assume participants will seek help when needs increase. My experience suggests the opposite may occur.

Participants may become less able to navigate systems precisely when support needs become greatest.

Questions for Parliament

I respectfully ask Parliament to consider:

1. How will participants be protected where Foundational Supports do not yet exist or remain inaccessible?

2. How will consistency be ensured across States and Territories?

3. How will reforms prevent participants from falling between disability, mental health and mainstream systems?

Submission 546

4. What evidence demonstrates that Foundational Supports currently possess sufficient capacity before support transitions occur?

5. How will outcomes be monitored where support reductions increase hospitalisation, deterioration or crisis?

Reflection: Sustainability Compared With What?

I support sustainability; however, I respectfully ask Parliament:

Sustainability compared with what?

Because costs do not necessarily disappear when disability support is reduced, sometimes costs reappear through:

• hospitalisation;
• emergency systems;
• institutional care;
• crisis intervention; and
• loss of independence. The absence of support may shift costs rather than eliminate them.

Conclusion

My concern is not whether Foundational Supports should exist. My concern is whether participants may lose established supports before alternatives are operational, accessible and demonstrably effective because the existence of policy is not the same as the existence of support.

And:

Unavailable support does not become effective merely because responsibility shifts elsewhere.

I ask Parliament to: Ensure that reforms do not create circumstances in which participants become progressively less supported while systems determine who is responsible.

Because disability does not pause while systems transition.

Uncertainty, Deterioration and Reduced Ability to Self-

Advocate

I ask Parliament to consider what occurs when participants become progressively less able to explain deterioration, seek reassessment, navigate systems or advocate effectively for additional support.

My concern is not theoretical; it arises from lived experience. My experience suggests deterioration does not always increase visibility. Sometimes deterioration increases invisibility.

Deterioration May Reduce Capacity to Seek Help

Periods of significant deterioration in my life have included:

• reduced communication or inability to communicate;
• reduced food and fluid intake;
• impaired executive functioning;

Submission 546

• prolonged shutdown;
• inability to maintain basic daily functioning; and
• diminished ability to engage with systems or seek support. These periods did not indicate reduced need. They reflected increasing impairment and increasing vulnerability. I am concerned systems may assume participants will seek help when support needs increase. My experience suggests the opposite may occur. Participants may become progressively less able to navigate systems precisely when support needs become greatest.

Uncertainty as a Source of Deterioration

My experience suggests prolonged uncertainty may itself produce harm.

Uncertainty regarding:

• support availability;

• reassessment outcomes;

• funding changes;

• legislative reform; or

• future service access may contribute to:

• cumulative stress;

• worsening anxiety;

• autistic burnout;

• shutdown;

• reduced functioning; and

• increased vulnerability. The anticipation of losing support may become harmful before any actual change occurs.

I ask Parliament to consider: What is the cumulative impact of prolonged uncertainty for participants whose disability already affects regulation, executive functioning or resilience to stress?

Relevant Legislative Changes

Schedule 1, Part 2 — Limiting Unscheduled Plan Reassessments

The Bill introduces requirements that alterations in functional capacity be significant and ongoing before certain reassessment pathways apply. I understand efforts to reduce unnecessary reassessment burden.

However, I am concerned deterioration may occur gradually through:

• cumulative stress;
• burnout;
• repeated overload;
• increasing shutdown; or
• progressive withdrawal before becoming externally recognisable as significant and ongoing. Participants may therefore deteriorate substantially before systems recognise increased need.

Requirement for Further Evidence and Functional Capacity Assessment

Submission 546

My experience following psychiatric hospitalisation was that worsening mental health and increasing support needs did not automatically result in increased support. Instead, additional evidence was required.

I was advised to obtain:

• a Functional Capacity Assessment; and
• submit a Change in Situation request. I ask Parliament: What occurs when participants require additional evidence precisely when deterioration reduces their capacity to obtain it?

Reduced Advocacy May Reflect Increasing Disability

I am concerned that participants who become:

• non-verbal;
• withdrawn;
• unable to engage; or
• unable to organise reassessment processes may inadvertently appear disengaged rather than increasingly impaired because reduced communication may not indicate reduced need. Reduced communication may indicate an increasing risk.

Plan Suspension and Participant Non-Response

Relevant provisions:

Schedule 1, Part 7 — Plan suspension provisions

Examples within explanatory material describe circumstances involving prolonged non-contact.

I am concerned these provisions may disproportionately affect participants experiencing:

• autistic shutdown;

• severe burnout;

• psychiatric deterioration;

• communication impairment; or

• prolonged withdrawal. My experience includes periods where:

• I stopped communicating;

• I lost the capacity to respond;

• functioning deteriorated severely Non-response did not indicate reduced need. Non-response reflected increasing impairment.

I ask Parliament: How will systems distinguish between disengagement and profound deterioration?

Invisible Deterioration

I often continued to appear:

• articulate;

Submission 546

• informed; or
• capable while deterioration progressed internally.

External appearance did not necessarily reflect:

• safety;
• stability;
• sustainable functioning; or
• reduced vulnerability. I am concerned systems may overestimate functioning where participants retain intermittent capacity to communicate because visible functioning and sustainable functioning are not necessarily equivalent

Reduced Ability to Self-Advocate and Fluctuating Disability

This concern is particularly relevant where disability fluctuates significantly.

My experience suggests participants with Autism and psychosocial disability may:

• appear capable during assessments;
• later experience prolonged deterioration;
• lose capacity to advocate; and
• become increasingly invisible to systems. Participants may therefore be least able to seek support precisely when their support needs are greatest.

Questions for Parliament

I respectfully ask Parliament to consider:

1. How will reforms protect participants who become less able to advocate as disability severity increases?

2. How will systems recognise deterioration where communication capacity reduces?

3. How will reassessment processes operate where participants lose the ability to organise evidence?

4. How will policy distinguish between:

5. disengagement;

6. withdrawal; and

7. increasing impairment?

8. What safeguards exist where deterioration reduces the capacity to seek help before a crisis occurs?

Reflection: The Risk of Waiting for Visibility

My concern is that systems may respond only after deterioration becomes externally visible.

My experience suggests deterioration often occurs privately and cumulatively.

By the time deterioration becomes visible:

• crisis may already exist;
• shutdown may already be prolonged;
• functioning may already have collapsed.

Submission 546

I ask Parliament: Should participants be required to visibly deteriorate before systems recognise an increased need?

Conclusion

I support efforts to improve consistency and sustainability within the NDIS.

However, I am concerned reforms may unintentionally assume participants will:

• recognise deterioration;
• seek help;
• gather evidence; and
• advocate effectively even when disability itself may progressively reduce those capacities, because reduced ability to self advocate may not indicate reduced need.

Sometimes, reduced advocacy reflects increasing impairment and systems designed around participant responsiveness may overlook participants precisely when they become most vulnerable.

Social Participation and Inclusion

I am concerned discussions regarding disability supports may unintentionally treat social and community participation as discretionary, secondary or less important than supports associated with personal care or basic daily functioning.

My lived experience suggests something different.

For me, social and community participation has often functioned as:

• protection against isolation;
• maintenance of routine;
• support for regulation;
• connection with the broader community; and
• preservation of fragile stability. Participation has not removed disability. Participation has sometimes reduced deterioration.

Participation Has Always Been Limited and Fluctuating

My ability to engage socially and participate in community life has never been consistent.

Participation has remained limited and episodic due to:

• sensory overload;
• communication challenges;
• difficulty interpreting social cues;
• withdrawal associated with overwhelm;
• autistic burnout; and
• fluctuating functioning. Reduced participation did not indicate reduced need. Often, reduced participation reflected increasing difficulty.

Support Did Not Create Participation. Support Made Participation Possible.

Submission 546

Periods with greater availability of support improved my capacity to engage in limited forms of participation.

Examples included:

• gentle community activities;
• supported outings;
• walking;
• low-demand social interaction; and
• maintaining some connection with environments outside the home. These activities may appear minor; however, my experience suggests they performed important functions.

Participation supported:

• routine;
• exposure to community;
• reduced isolation; and
• maintenance of functioning. Support improved opportunities. Support did not remove barriers.

Relevant Legislative Context

The proposed reforms emphasise sustainability, support boundaries and clearer distinctions regarding funded supports. I understand efforts to ensure supports align with legislative intent. However, I am concerned that a narrower interpretation of support needs may unintentionally reduce access to supports facilitating participation.

I ask Parliament: How will systems distinguish between participation supports that preserve functioning and participation supports interpreted as optional?

Social Isolation Is Not Neutral

My experience suggests prolonged isolation contributes to:

• worsening mental health;

• increased withdrawal;

• cumulative deterioration;

• increased vulnerability; and

• reduced resilience to stress. For participants experiencing Autism and psychosocial disability, isolation may increase:

• autistic burnout;

• shutdown;

• anxiety;

• depression; and

• reduced capacity to engage with systems. I ask Parliament to consider: Should increasing isolation be regarded as a neutral outcome of support reduction?

Because the absence of participation may itself become harmful.

Submission 546

COVID-19 and Reduced Participation

The COVID-19 period significantly reduced opportunities for participation.

For participants already experiencing fluctuating functioning and limited engagement, reduced opportunities compounded:

• isolation;
• support disruption;
• routine disruption; and
• reduced connection. Periods of reduced participation during this time should not automatically be interpreted as evidence that support was unnecessary or that goals were achieved.

My experience suggests reduced participation may reflect reduced opportunity rather than: reduced need.

Participation and Visibility

Participation may also influence visibility.

People who withdraw become:

• less visible;
• less connected; and
• potentially less likely to receive support before deterioration increases. I am concerned participants may become progressively more isolated while simultaneously becoming less visible to systems. My experience suggests deterioration often occurs privately. Reduced participation may therefore increase invisibility.

The Risk of Segregation

I am concerned that reductions in participation support risk, unintentionally increasing segregation.

I ask Parliament: Does reducing support for participation risk returning disabled Australians to greater isolation, exclusion or invisibility within communities?

Because inclusion is not achieved merely through physical presence.

Inclusion requires:

• opportunity;
• accessibility;
• support; and
• sustained engagement.

Participation and Fragile Stability

My experience suggests that participation may help maintain fragile stability.

Submission 546

Participation has not been removed:

• Autism;

• psychosocial disability;

• sensory dysregulation;

• executive dysfunction; or

• fluctuating capacity. However, participation is sometimes reduced:

• isolation;

• cumulative stress; and

• deterioration. Supporting preserving participation may therefore preserve stability because maintaining participation in the presence of significant disability may itself represent meaningful success.

Questions for Parliament

I respectfully ask Parliament to consider:

1. How will reforms protect and support those who preserve community participation and reduce isolation?

2. How will systems distinguish between:

• reduced participation caused by deterioration; and
• reduced participation indicating reduced need?

3. What evidence exists that reduced participation supports do not increase isolation, deterioration or crisis?

4. How will inclusion be measured where participation opportunities are reduced?

Reflection: Participation Is Not Frivolous

I am concerned that social and community participation may sometimes be viewed as non-essential.

My experience suggests participation may instead function as prevention.

Because:

• participation may reduce isolation;
• reduced isolation may reduce deterioration; and
• reduced deterioration may reduce crisis. The relationship may not always be direct.

Conclusion

My concern is not whether disability supports should prioritise participation. My concern is whether participation is being underestimated as a protective factor, as it may not remove disability. Sometimes participation helps prevent further deterioration.

Submission 546

And systems focused only on crisis response may overlook supports that help preserve connection, inclusion and fragile stability before a crisis occurs.

Key Amendment Requests

I support reform of the NDIS and recognise the importance of sustainability, consistency and public confidence in the Scheme.

However, I respectfully submit that the proposed reforms require additional safeguards to ensure that participants with fluctuating, cumulative, or context-dependent disabilities are not unintentionally disadvantaged.

My amendment requests arise from lived experience and concern regarding unintended consequences rather than opposition to reform itself.

Amendment Request 1:

Require Functional Capacity Assessments to Consider Sustainability, Usability and

Environmental Context

Relevant provisions:

• Schedule 1, Part 1 — Definition of functional capacity;

• Proposed subsection 32L(4) concerning assessment information. I recommend assessment frameworks explicitly require consideration of:

• fluctuating functioning;

• cumulative stress;

• masking;

• environmental demands;

• sustainability of functioning over time;

• recovery burden; and

• usability of demonstrated capacity. Because demonstrated capacity and sustainable functioning are not necessarily equivalent.

Amendment Request 2:

Introduce Safeguards for Participants Experiencing Reduced Ability to Self-Advocate

Relevant provisions:

• Schedule 1, Part 2 — Alterations in functional capacity;

• Schedule 1, Part 7 — Plan suspension/non-contact provisions. I recommend safeguards requiring consideration of whether:

• reduced communication;

• prolonged withdrawal;

• shutdown;

• executive dysfunction; or

Submission 546

• inability to respond that reflect increasing impairment rather than disengagement or reduced need.

I recommend protections to prevent adverse outcomes when deterioration reduces a participant’s ability to seek reassessment or to provide evidence. Because reduced advocacy capacity may reflect increasing disability.

Amendment Request 3:

Delay Reliance on Foundational Supports Until Operational Capacity Is Demonstrated

Relevant context: Boundary changes between NDIS and alternative systems.

I recommend:

• delaying transitions reliant upon Foundational Supports until:
• services demonstrably exist;
• accessibility is confirmed;
• workforce capacity is established;
• consistency across jurisdictions is demonstrated; and
• independent evaluation occurs. Unavailable support does not become effective because responsibility shifts elsewhere.

Amendment Request 4:

Protect Participants With Fluctuating and Interacting Disabilities

Relevant provisions:

• Supports arising directly from impairment: amended paragraph 34(1)(aa);

• repeal of subsection 32K(3A). I recommend explicit recognition that:

• multiple impairments may interact;

• cumulative burden may increase impairment;

• fluctuating disability may not be accurately captured through an isolated assessment. Disability may emerge through interactions among impairments rather than from a single diagnosis in isolation.

Amendment Request 5:

Interpret Support Utilisation Data With Context

Submission 546

I recommend guidance requiring decision-makers to consider whether reduced utilisation reflects:

• autistic burnout;
• deterioration;
• provider shortages;
• inability to engage;
• reduced executive functioning; or
• worsening disability. Low utilisation does not necessarily indicate reduced need.

Amendment Request 6:

Protect Supports Facilitating Social and Community Participation

I recommend reforms explicitly recognise participation supports as potentially contributing to:

• reduced isolation;
• preservation of routine;
• maintenance of functioning;
• reduced deterioration; and
• community inclusion. Participation may preserve fragile stability rather than represent discretionary expenditure.

Amendment Request 7:

Require Monitoring of Unintended Consequences

I recommend ongoing independent monitoring of whether reforms increase:

• psychiatric hospitalisation;
• crisis presentations;
• prolonged shutdown;
• institutionalisation;
• suicidality;
• social isolation;
• nutritional compromise; or
• reduced participation. Monitoring should assess whether costs shift rather than reduce.

Reduced disability expenditure may not equal reduced societal cost.

Amendment Request 8:

Introduce Additional Safeguards Around Automated Administrative Action

Relevant provisions:

Schedule 3, Part 2 — Automated decision-making provisions (sections 59B–59D).

I recommend safeguards requiring review where:

• disability fluctuates;
• evidence is incomplete;
• participants experience communication impairment; or

Submission 546

• deterioration may be poorly captured through objective indicators. Automation may struggle to identify invisible deterioration or cumulative burden.

Amendment Request 9:

Recognise Maintenance of Fragile Stability as a Meaningful Outcome

I recommend that policy and assessment frameworks explicitly recognise maintaining functioning despite significant disability as a legitimate and successful outcome.

Support may:

• preserve independence;
• reduce crisis;
• reduce hospitalisation; and
• maintain community living without removing disability. Maintaining fragile stability may itself represent success.

Amendment Request 10:

Reduce the Repeated Burden of Proving Disability Across Decades

I recommend a review of the evidence requirements for participants with:

• longstanding diagnoses;
• extensive treatment histories;
• repeated assessment evidence; or
• chronic fluctuating disability. Repeated proof requirements may create a burden precisely when participants experience reduced capacity.

Questions for Parliament

I respectfully ask Parliament:

1. How will reforms protect participants who become less able to advocate as impairment increases?

2. How will systems distinguish between: o reduced need; and o reduced ability to access support?

3. How will support transitions occur before alternatives demonstrably exist?

4. How will success be measured by reduced expenditure? Or by preserved stability, inclusion and reduced crisis?

Conclusion

I support reform. I do not support reforms that unintentionally assume:

• disability remains stable;
• participants always retain the capacity to advocate;

Submission 546

• support reduction occurs without consequence; or
• alternative systems function before responsibility shifts. I respectfully request amendments to ensure sustainability objectives remain balanced with participant safety, inclusion, and protection from unintended harm.

The most vulnerable participants may become the least visible to systems precisely when support needs are greatest, and support should not only prevent crises. Support should preserve sustainable living before a crisis occurs.

Questions Parliament Should Consider

I respectfully ask Parliament to consider whether the proposed reforms adequately recognise the lived experience of participants whose disability is fluctuating, cumulative, context-dependent or characterised by periods of reduced capacity to communicate, advocate or sustain functioning.

My questions arise from lived experience rather than opposition to reform.

Functional Capacity, Assessment and Sustainability

Relevant provisions:

• Schedule 1, Part 1 — Functional capacity;
• Proposed subsection 32L(4) — assessment information requirements. I ask Parliament:

1. How will assessment frameworks distinguish between:

• demonstrated ability;
• usable ability; and
• sustainable functioning over time?

2. How will systems recognise participants whose functioning fluctuates significantly across environments or periods of cumulative stress?

3. How will assessments capture the cost of functioning rather than only evidence that functioning occurred?

4. How will systems distinguish between occasional capacity and reliable, sustainable capacity? Demonstrated capacity and sustainable functioning are not necessarily equivalent.

Fluctuating Disability and Interacting Impairments

Relevant provisions:

• Supports arising directly from impairment: amended paragraph 34(1)(aa).

I ask Parliament: How will systems recognise disability arising through interaction between:

• Autism;
• psychosocial disability;
• trauma;
• executive dysfunction;
• sensory dysregulation; and

Submission 546

• cumulative burden? How will reforms protect participants whose disability does not present consistently?

Disability may emerge through interactions among impairments rather than as an isolated diagnosis.

Reduced Ability to Self-Advocate

Relevant provisions:

• Schedule 1, Part 2 — changes relating to functional deterioration and reassessment;
• Schedule 1, Part 7 — plan suspension/non-contact provisions. I ask Parliament:

What protections exist when participants become progressively less able to:

• communicate;
• organise evidence;
• request reassessment; or
• advocate effectively? How will systems distinguish between disengagement and increasing impairment?

How will reforms protect participants whose deterioration reduces their ability to seek help before a crisis occurs?

Reduced advocacy capacity may reflect increasing disability rather than reduced need.

Foundational Supports and System Transitions

Relevant context:

Boundary changes between NDIS and alternative systems.

I ask Parliament: What evidence demonstrates Foundational Supports currently:

• exist;
• are funded;
• possess workforce capacity;
• operate consistently; and
• remain accessible across jurisdictions? How will participants be protected if established supports are reduced before alternatives function effectively?

How will reforms prevent participants from falling between:

• disability systems;
• mental health systems;
• hospital systems; and
• community supports? Unavailable support does not become effective because responsibility shifts elsewhere.

Support, Stability and Outcomes

Submission 546

I ask Parliament:

How will systems distinguish between a genuine reduction in disability impact and functioning maintained because supports remain available?

How will success be measured by reduced expenditure?

Or by preserved stability, reduced crisis and maintained participation?

Will maintaining fragile stability be recognised as a meaningful outcome?

Support effectiveness should not automatically become evidence support is unnecessary.

Uncertainty and Deterioration

I ask Parliament: What is the cumulative impact of prolonged uncertainty on participants whose disability already affects:

• regulation;
• resilience;
• executive functioning; or
• communication? Should participants be required to visibly deteriorate before systems recognise an increased need?

Deterioration does not always increase visibility. Sometimes deterioration increases invisibility.

Sustainability Compared With What?

The proposed reforms repeatedly reference sustainability and the restoration of the Scheme’s intent.

I respectfully ask Parliament to compare sustainability with what?

If disability support reduces:

How will outcomes be measured where costs reappear through:

• psychiatric hospitalisation;
• crisis intervention;
• emergency systems;
• institutionalisation; or
• loss of independence? Costs may shift rather than disappear.

Final Question

Ultimately, I ask Parliament: Will reforms adequately protect participants who become the least visible to systems precisely when their support needs are greatest?

The most vulnerable participants may not always be those who ask for the most help. Sometimes the most vulnerable participants are those who progressively lose the ability to ask at all.

Submission 546

Conclusion

I support efforts to improve the sustainability, consistency and integrity of the National Disability Insurance Scheme. I recognise the Scheme faces genuine pressures and that reform may be necessary. My concern is not that reform is occurring. My concern is whether the proposed reforms adequately protect participants whose disability is:

• fluctuating;
• cumulative;
• context-dependent;
• masked;
• characterised by periods of reduced ability to communicate, advocate or sustain functioning. My concerns arise from lived experience rather than theory.

Over approximately two decades, my experience has included:

• repeated psychiatric hospitalisation;
• prolonged deterioration;
• institutional living;
• severe autistic burnout;
• prolonged shutdown;
• reduced communication;
• reduced food and fluid intake;
• suicidal crisis;
• social isolation;
• fluctuating functioning; and
• repeated interaction with systems during periods of vulnerability. My experience has also shown:

Periods with greater support availability were generally associated with:

• reduced psychiatric admissions;
• increased stability;
• improved ability to remain living in the community; and
• improved participation despite ongoing significant disability. Support did not remove disability.

Support frequently preserves fragile stability.

The proposed reforms place increasing emphasis upon:

• functional capacity;
• sustainability;
• support boundaries;
• reassessment;
• evidence requirements; and
• clearer relationships between impairment and funded supports. I support consistency and sustainability.

However, I am concerned reforms may unintentionally assume:

• demonstrated capacity equals sustainable functioning;

Submission 546

• participants retain the ability to advocate when needs increase;
• support reductions occur without consequence;
• treatment systems can replace disability supports;
• alternative supports exist before responsibility shifts; or
• deterioration becomes visible before crisis occurs. My experience suggests these assumptions may not always be accurate.

I ask Parliament to consider whether:

Functional capacity, usability, and sustainability are being treated as interchangeable concepts, even though lived experience suggests they are not, and participants who become progressively less visible to systems may experience unintended harm.

Deterioration does not always increase visibility; sometimes, deterioration increases invisibility.

I ask Parliament to consider what occurs when participants become less able to:

• communicate;
• seek reassessment;
• organise evidence;
• advocate for support; or
• engage with systems precisely when support needs increase.

A reduced ability to self-advocate may reflect increasing disability rather than a reduced need.

I ask Parliament to consider whether support systems should measure success only through reduced expenditure or whether success should also include:

• preserved stability;
• reduced crisis;
• maintained independence;
• reduced hospitalisation;
• community participation; and
• sustainable living. Maintaining fragile stability in the presence of significant disability may itself represent meaningful success.

I respectfully request amendments ensuring that reforms include safeguards for participants whose disability fluctuates, accumulates over time, or reduces their capacity to seek help before deterioration becomes externally visible.

I also request safeguards ensuring:

• assessment frameworks consider sustainability and usability;
• Foundational Supports demonstrate operational capacity before reliance occurs;
• reduced utilisation is not automatically interpreted as reduced need;
• participation and inclusion remain recognised as protective factors;
• unintended consequences are monitored; and
• participants with longstanding disabilities are not required to repeatedly prove impairment during periods of increasing vulnerability.

Ultimately, I ask Parliament:

Submission 546

Who becomes invisible under these reforms?

Because the participants most vulnerable to harm may not always be those who ask for the most support. Sometimes, the most vulnerable participants are those who progressively lose the ability to ask at all, not whether participants survive.

My concern is:

What happens to participants between crisis points, and whether systems recognise deterioration before collapse occurs. Because support should not merely prevent crisis.

Support should be preserved:

• stability;
• inclusion;
• participation;
• independence; and
• the possibility of a sustainable life. I respectfully ask Parliament to ensure reforms designed to protect the future sustainability of the NDIS do not unintentionally reduce protections for participants whose disability is least visible precisely when support needs become greatest.

Survival and sustainable living are not the same.

Nor are:

• survival and inclusion;
• survival and wellbeing; or
• survival and participation. The purpose of disability support should not only be to help people survive.

It should also help people remain connected, safe, included, and able to sustain their lives within the community.

Final sentence

The true measure of reform may not be whether systems become more efficient, but whether the people most vulnerable to being overlooked remain protected.

I ask Parliament to ensure reforms do not unintentionally create circumstances where participants become progressively less supported while systems determine who is responsible, because disability does not pause while systems transition.

Submission 546

Attachment A: Timeline of Disability, Supports and Deterioration (2008–2026)

This timeline is provided to demonstrate the cumulative interactions among disability, support availability, deterioration, crisis, hospitalisation, participation, and fluctuating functioning over time.

Year/Period                  Event                        Impact / Relevance

Diagnosed with Borderline Personality Significant mental health impairment

2008          Disorder (BPD) and Major Depressive        recognised. No meaningful disability

Disorder (MDD). support.

Diagnosed with Complex Post-Traumatic     Increasing complexity of disability and2011                 Stress Disorder (Complex PTSD).           ongoing deterioration.

Detained under Mental Health legislation.                                                        Severe deterioration requiring2013          Approximately 3 months of psychiatric                                                         prolonged inpatient treatment.                 hospitalisation.

Multiple psychiatric admissions. Reliance    Repeated crisis intervention in the2014–2016             upon public mental health systems.          absence of sustained support.

Medication-related deterioration associated   Determined unsafe to remain living2016               with lithium toxicity.                        independently.

Transferred to residential aged care despite    Institutionalisation, reduced autonomy,2016–2018               being approximately 60 years old.           and limited disability-specific support.

Treatment continued despite              Continued engagement with psychiatrists and                                                                 deterioration and loss of independence.2016–2017     psychologists funded through private health                                                        Demonstrates treatment ≠ disability                insurance.                                                               support.

Private health insurance became financiallyLate 2017                                          Reduced access to specialist treatment.                unsustainable.

Beginning of structured disability2018          Entered NDIS (Queensland).                                                               support.

Improved stability and reduced

reliance on crisis systems. Support2018–2019    Access to greater supports.                                                           preserved functioning but did not

remove disability.

COVID-19 period. Significant reduction in    Increased isolation and service2020             community participation opportunities.        disruption.

Approximately two-thirds reduction in NDIS

funding compared with earlier plans.        Reduced support despite ongoing2020                 Significant reduction in Improved Daily      impairment.

Living and Core supports.

Funding remained substantially reduced.     Reduced participation and support2020–2022               Support worker hours are limited.             continuity.

Service instability, workforce shortages and   Support access became increasingly2020–2022                provider limitations increased.                 inconsistent.

Ongoing autistic burnout, fluctuating        Reduced utilisation should not be2021–2022                functioning and participation restrictions.      interpreted as reduced need.

Internal Review resulted in increased

2023          Capacity Building and additional support     Improved support availability.

hours.

Submission 546

Year/Period                  Event                        Impact / Relevance

Greater support is associated with improved2023–2025                                              Support preserved fragile stability.                   stability and reduced psychiatric admissions.

Increasing autistic burnout, meltdowns and   Worsening deterioration despite2024–2025               prolonged shutdown.                          support.

Psychiatric hospitalisation associated with    The treating psychiatrist consideredLate 2025                  suicidality.                                    existing supports inadequate.

Additional disability recognition/supportLate 2025                                                 Applications unsuccessful.                 applications supported by a psychiatrist.

Advised by the NDIS Local Area Coordinator

that a Functional Capacity Assessment (FCA) Additional evidence burden despiteLate 2025              and a Change in Situation application are     worsening functioning.

required. Significant deterioration and increasedJanuary 2026 Severe suicidal crisis and suicide attempts. vulnerability.

Increasing concern regarding NDIS reforms,Early 2026                                                  Escalation in anxiety and deterioration.                support uncertainty and cumulative stress.

Progressive increase in meltdowns and       Reduced capacity and increasingMarch 2026               shutdowns.                                        instability.

Prolonged shutdown lasting approximatelyLate March–                                            Severe deterioration with reduced                 eight days. Reduced communication, reducedApril 2026                                                  capacity to seek help.                 intake, impaired functioning.

Recovery period lasting several weeks        Demonstrates a prolonged recoveryApril 2026               following shutdown.                       burden associated with deterioration.

Severe social isolation, autistic burnout,

2026           fluctuating functioning, executive            Continuing vulnerability despite

(Current)      dysfunction, sensory dysregulation and        existing supports.

ongoing uncertainty regarding support.

Functional Capacity Assessment completed2026                                                     Current uncertainty regarding future              and Change in Situation submitted. Awaiting(Current)                                                 support availability.           NDIA outcome.

Concern regarding the impact on2026              Proposed NDIS reforms under consideration.  participants with fluctuating and(Current)                                                         cumulative disability.

Key Themes Emerging From Timeline

The timeline demonstrates recurring patterns:

1. Support reduction or instability was frequently associated with deterioration.

2. Periods with greater support availability were generally associated with improved stability despite persistent disability.

3. Support frequently preserved functioning rather than removed impairment.

4. Deterioration sometimes reduced the ability to communicate, advocate or seek help.

5. Reduced participation did not necessarily indicate reduced need.

6. Treatment and disability support performed different functions.

7. Cumulative deterioration often occurred before crisis became externally visible.

Submission 546

Relevance to Proposed Reforms

The timeline raises questions regarding whether proposed reforms adequately recognise:

• fluctuating disability;

• cumulative deterioration;

• reduced capacity to self-advocate;

• sustainability of functioning;

• interaction between impairments; and

• support as prevention rather than crisis response. Relevant legislative areas include:

• Schedule 1, Part 1: Definition of functional capacity;

• Schedule 1, Part 2: Significant and ongoing alterations in functional capacity;

• Schedule 1, Part 7: Plan suspension/non-contact provisions;

• Amended paragraph 34(1)(aa): Supports arising directly from impairment.

Submission 546

Attachment B: Legislative Mapping — Proposed NDIS

Amendment Bill 2026

This Attachment maps proposed legislative changes against potential participant impacts arising from the lived experience of Autism Level 2, psychosocial disability, fluctuating functioning, autistic burnout, prolonged shutdown and cumulative deterioration.

Proposed                                                             Suggested                    Intended         Potential       Lived Experience    Provision /                                                          Safeguard /                    Purpose      Participant Risk       Evidence  Amendment                                                Amendment

Require assessment                                                     Capacity may be                 Improve         Capacity may be                       frameworks toSchedule 1, Part                                    demonstrable during                   consistency in    treated as                                 consider usability,1 — Definition of                                     assessments but                  assessment and   equivalent to                                  sustainability,functional                                              unavailable during                   support           sustainable                               recovery burdencapacity                                           shutdown, burnout or                   determination    functioning                            and environmental                                                     cumulative stress                                                                               context

Schedule 1, Part                                                           Permit earlier                                       Participants may   Progressive2 — Significant                                                                recognition of                Reduce           deteriorate          deterioration associatedand ongoing                                                               cumulative                  unnecessary      gradually before   with autistic burnout alterations in                                                                       deterioration and                   reassessments    changes meet      and prolongedfunctional                                                                          fluctuating                                     thresholds        shutdowncapacity                                                                                disability

Proposed                        Assessments may                                                     Capacity fluctuates     Require explicitsubsection 32L(4) Standardise      capture functioning                                                             significantly depending assessment of— Assessment    assessment       in a moment rather                                               upon stress and          sustainability andinformation       information      than functioning                                                   environment           recovery burdenrequirements                      over time

Proposed                          Assessors may                                                                         Require expertisesubsection                         underestimate     Complex impairment                    Clarify who may                                           regarding32L(4A) —                     Autism and       emerges through                 perform                                                        fluctuatingPersons                            psychosocial       interaction between                  assessments                                                       disability andundertaking                            disability          multiple conditions                                                                    Autismassessments                           interactions

Amended                                                   Autism, trauma,paragraph        Strengthen the   Risk of                                Recognise                                                      psychosocial disability34(1)(aa) —       link between     fragmentation                                interacting                                                 and executiveSupports arising   impairment and  where impairments                      impairments and                                                       dysfunction interactdirectly from      funded support    interact                                 cumulative burden                                                      cumulativelyimpairment

Participants with fluctuating

Repeal of        Modify support   disability may     Functioning changes    Include contextual

subsection        determination    experience a       across time and         interpretation of

32K(3A)          processes        narrower          environments            disability impact

interpretation of support needs

Schedule 1, Part  Manage                   FCA required despite  Reduce repeated                                       Participants may2 — Reassessment reassessment                        longstanding diagnoses evidence burden                                 need to repeatedlyrequirements      burden                          and extensive history   for chronic,

Submission 546

Proposed                                                             Suggested                    Intended         Potential       Lived Experience    Provision /                                                          Safeguard /                    Purpose      Participant Risk       Evidence  Amendment                                                Amendment

prove disability fluctuating while deteriorating disability

An additionalRequirement for Obtain evidence                      Psychiatric admission  Safeguards where                                 burden whenFCA / Change in supporting                         followed by a          reduced capacity                                        participants areSituation         increased                           requirement for FCA   impairs evidence                                          least able to obtainpathways         supports                              despite deterioration    gathering                                   evidence

Schedule 1, Part                  Non-response may Prolonged shutdown   Require                 Improve7 — Plan                               reflect             associated with         investigation of                    administrativesuspension /                          deterioration rather reduced                impairment-related                management ofparticipant non-                    than             communication and    non-response                    inactive planscontact                           disengagement     functioning            before suspension

Schedule 3, Part                 Automation may                                                     Functioning often     Human review2 — Automated   Improve         not recognise                                                      appears externally      safeguards foradministrative     administrative    fluctuating or                                                            stable despite severe    fluctuatingaction (sections    efficiency         invisible                                                             internal deterioration    disability cohorts59B–59D)                            deterioration

Boundary

changes between                                       Participants may   Pre-NDIS experience   Delay transitionsNDIS and                    Clarify Scheme   lose supports       included repeated       until Foundationalalternative                     responsibilities   before alternatives  hospitalisation and     Supportssystems /                                         exist                 institutionalisation     demonstrably existFoundational

Supports

Psychiatric treatment   ExplicitSupport                          Treatment may be                  Restore original                     continued despite       recognition thatboundary                            substituted for               Scheme intent                         deterioration and RAC  treatment ≠reforms                                disability support                                                   placement               disability support

Protect                               ReducedParticipation-                                            Participation supports   participation                    Clarify support   participation mayrelated impacts                                     reduced isolation and   supports where                  scope            increase isolation(indirect)                                             preserved stability      linked to                                and deterioration                                                                               functioning

Monitor whetherSustainability    Improve long-   Cost reduction      Historical reliance                                                                           reforms shift costsobjectives across term Scheme    may shift burden   upon hospitalisation,                                                                                      rather than reducereforms            sustainability     elsewhere      RAC and crisis systems                                                                  them

Cross-Cutting Themes Identified

The following themes appear repeatedly across proposed reforms:

Submission 546

1. Demonstrated capacity ≠ for sustainable functioning Participants may:

• possess capacity;

• demonstrate capacity; while remaining unable to:

• sustain functioning;

• access capacity consistently; or

• maintain functioning over time.

2. Reduced advocacy ≠ reduced need Participants experiencing:

• shutdown;

• deterioration;

• withdrawal; or

• executive dysfunction may become progressively less able to:

• seek reassessment;

• organise evidence; or

• communicate increased support need.

3. Support often preserves fragile stability rather than removes disability Periods with greater support availability were associated with:

• reduced psychiatric admissions;
• increased stability;
• improved participation. Support frequently maintained functioning rather than removing impairment.

4. Reduced utilisation ≠ reduced need Lower utilisation may reflect:

• autistic burnout;
• deterioration;
• support shortages;
• inability to engage.

5. Costs may shift rather than disappear Reduced support may increase reliance upon:

• hospitalisation;
• emergency systems;
• institutional care;
• crisis intervention.

Submission 546

Legislative Questions for Consideration

This legislative mapping raises the following questions:

1. How will reforms distinguish between demonstrated ability and sustainable functioning?

2. How will systems recognise deterioration where participants progressively lose the capacity to advocate?

3. What safeguards exist where support transitions occur before alternatives become operational?

4. How will unintended consequences be monitored?

5. How will success be measured by reduced expenditure? Or by preserved stability and reduced crisis?

Overall Observation

My lived experience suggests participants most vulnerable to harm may not always be those who seek the most support. Sometimes, the most vulnerable participants are those who progressively lose the ability to ask.

I respectfully request legislative safeguards to ensure that reforms designed to improve sustainability do not unintentionally increase risk for participants whose disability fluctuates, accumulates over time, or reduces their capacity to seek help before deterioration becomes visible.