Submission to the Senate Community Affairs Legislation Committee

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

Recognising Functional Disability, Environmental Illness and Procedural Justice: Ensuring the NDIS Remains Accessible to Australians Living with Complex and Environmentally Acquired Disabilities

Submitted by:

Corina Curteanu Date: 7 July 2026

“The true measure of a disability system is not how it treats those whose disabilities are easily recognised, but how fairly it responds to those whose disabilities challenge existing assumptions.”

Author Declaration and Statement of Lived Experience

Declaration

I submit this document as a person with lived experience of complex chronic illness, disability, environmental sensitivities and prolonged interaction with disability support and administrative systems.

The experiences described in this submission are provided to assist the Committee in understanding the practical impact that disability recognition processes, assessment frameworks and support availability can have on individuals and families.

This submission does not seek to replace medical or scientific assessment, nor does it ask the Committee to determine individual medical causation.

Rather, it seeks to highlight the importance of ensuring that disability systems assess functional impairment, participation restrictions and support needs fairly, particularly for people living with complex, fluctuating and less visible disabilities.

Statement of Lived Experience

Since 2019, my health condition has significantly deteriorated, affecting multiple areas of my life, including my capacity to work, maintain stable housing and participate in ordinary daily activities.

My experience has involved living with complex chronic health conditions including:

• Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS);
• Multiple Chemical Sensitivity (MCS);
• Environmental Sensitivities/Electromagnetic Sensitivity (ES);
• inflammatory and rheumatological symptoms; and
• significant functional limitations.

Despite seeking recognition and support through disability systems, including multiple applications for disability assistance and subsequent review processes, I experienced prolonged difficulty obtaining recognition of the extent of my impairment. The consequences were significant.

During this period, I experienced housing instability, homelessness, loss of independence, personal hardship and the need to temporarily relocate to New Zealand to access family support and an environment more suitable for recovery.

My experience demonstrates the importance of ensuring that disability systems are capable of recognising conditions that are complex, fluctuating and not always immediately visible.

Executive Summary

This submission is respectfully made to assist the Senate Community Affairs Legislation Committee in its consideration of the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

It is informed by more than five years of lived experience navigating Australia’s disability, health and administrative systems while living with severe and enduring functional impairment arising from complex chronic illness associated with Environmental Sensitivities/Electromagnetic Sensitivity (ES), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Multiple Chemical Sensitivity (MCS), inflammatory rheumatological disease and related conditions.

This submission does not seek to ask Parliament to determine unresolved scientific questions concerning the causes or mechanisms of environmentally associated illnesses. Rather, it asks Parliament to ensure that disability legislation does not exclude people whose functional impairments are genuine, substantial and enduring simply because the underlying medical conditions remain incompletely understood or continue to be the subject of scientific discussion. The central proposition of this submission is:

Disability legislation should assess people according to their functional capacity, barriers to participation and support needs—not according to whether every aspect of the underlying medical condition has achieved universal medical consensus.

My experience demonstrates significant shortcomings in Australia’s current disability assessment framework. Since 2019, I have experienced profound deterioration in health and functional capacity. Despite extensive medical evidence documenting severe disability, I was unsuccessful in three applications for the Disability Support Pension (DSP).

Over a period exceeding five years, I was required to navigate repeated administrative processes, including disability assessments, review procedures, proceedings before the Administrative Appeals Tribunal and engagement with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.

Throughout these processes, I consistently experienced a system that appeared to focus more heavily on questioning the legitimacy and recognition of my diagnoses than on evaluating the substantial functional impairments that prevented me from living, working and participating in the community on an equal basis with others.

The consequences extended well beyond administrative inconvenience

They contributed to prolonged financial hardship, loss of appropriate support, deterioration of health, family breakdown, homelessness and eventual relocation overseas to seek temporary support from relatives in an environment where I could begin stabilising and recovering from cumulative physical and psychological trauma.

This submission argues that these outcomes are not merely individual circumstances. They reveal systemic weaknesses that disability reform should address rather than reinforce. The proposed amendments place increased emphasis on functional assessment and decision-making processes. While these objectives may improve consistency and sustainability, they also carry a risk that people living with complex, fluctuating or environmentally influenced disabilities may continue to experience exclusion unless legislation expressly requires assessment frameworks that:

• recognise fluctuating and cumulative impairments;
• account for environmental barriers that significantly affect daily functioning;
• ensure assessors have appropriate expertise in complex chronic illnesses;
• avoid unsupported assumptions that medically complex presentations are primarily psychological in origin; and
• provide robust procedural safeguards where scientific uncertainty exists.

This submission further argues that Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities (CRPD) require disability assessment systems to focus on equality, participation, dignity, accessibility and non-discrimination rather than diagnostic certainty alone.

In addition to analysing the implications of the Bill, this submission examines relevant medical literature, international human rights principles, comparative approaches and emerging evidence relating to complex chronic illness, environmental sensitivities and functional disability.

Finally, this submission proposes practical legislative and policy reforms designed to strengthen procedural fairness, improve assessment quality and ensure that Australians living with complex disabilities are not excluded from appropriate support because their conditions challenge conventional assumptions.

The purpose of disability legislation is not merely to administer funding. Its deeper purpose is to ensure that every Australian whose functional impairments substantially limit participation in society is assessed fairly, respectfully and according to law. That principle should remain central to the future of the National Disability Insurance Scheme.

About the Author and Basis of Submission

Lived Experience as a Source of Policy Evidence

This submission is provided by a person with direct lived experience of Australia’s disability assessment and support systems.

For many years, I have lived with complex chronic health conditions resulting in substantial and ongoing functional impairment. My health circumstances include Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Environmental Sensitivities/Electromagnetic Sensitivity (ES) associated with chemical and environmental exposures, Multiple Chemical Sensitivity (MCS), inflammatory rheumatological disease and related disabling conditions.

My experience has involved extensive interaction with Australia’s disability, health, administrative review and social support systems. This has included multiple applications for disability assistance, prolonged administrative review processes, proceedings before the Administrative Appeals Tribunal and engagement with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.

I provide this submission not only as an individual seeking recognition of my own circumstances, but as someone who has experienced firsthand the systemic challenges faced by people whose disabilities are complex, fluctuating, environmentally influenced or poorly accommodated within traditional assessment frameworks.

The purpose of including my experience is not to suggest that one person’s circumstances represent every person living with disability.

Rather, my experience provides a practical example of how gaps within disability systems can affect people whose conditions do not fit conventional models of assessment.

Professional and Educational Background

My background includes education and experience in holistic health and psychology-related fields. This has informed my understanding of the relationship between physical health, environmental factors, psychological wellbeing, social circumstances and recovery environments.

Throughout my illness journey, I have attempted to approach my circumstances constructively.

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Rather than focusing solely on personal assistance, I have explored broader solutions, including the development of environmentally appropriate accommodation models for people whose disabilities are significantly affected by environmental conditions.

These ideas are based on the principle that disability support should not only respond to existing impairment, but should also explore innovative approaches that improve participation, independence and quality of life.

1.3 Purpose of This Submission

The purpose of this submission is to respectfully request that Parliament consider whether the proposed amendments to the National Disability Insurance Scheme adequately protect Australians living with complex and less commonly recognised disabilities.

This submission does not seek to resolve scientific debates regarding every possible cause or mechanism associated with environmental illness.

Instead, it raises a fundamental disability rights question:

When a person experiences substantial, persistent and documented functional impairment, should access to disability support depend upon complete scientific agreement about the underlying cause of that impairment?

The position advanced in this submission is that disability systems should focus primarily on:

• functional limitations;
• barriers to participation;
• support requirements;
• reasonable accommodation; and
• dignity and equality before the law.

This approach is consistent with contemporary disability rights principles, including those reflected in the United Nations Convention on the Rights of Persons with Disabilities.

2. My Experience of Systemic Failure in Disability Recognition

2.1 Escalation of Disability and Interaction with the System

From approximately 2019 onwards, my health condition deteriorated significantly, resulting in severe limitations across multiple areas of daily functioning.

These limitations affected my capacity to:

• maintain employment;
• manage ordinary household activities;
• access appropriate housing;
• participate socially and economically;
• tolerate common environmental conditions; and
• maintain physical stability and health.

Despite medical evidence documenting significant impairment, my applications for disability support were unsuccessful on three separate occasions.

Over a period of more than five years, I was required to engage with disability assessment systems, administrative processes and review mechanisms in an attempt to obtain recognition of my disability.

This occurred during a period when my health was already severely compromised.

The length, complexity and uncertainty of these processes created additional burdens and contributed to further deterioration at a time when support was most needed.

2.2 The Central Problem: Assessment of Disability Versus Assessment of Diagnosis

A recurring difficulty throughout my experience was that assessment processes appeared to focus heavily on whether my underlying conditions were sufficiently accepted or understood, rather than on the practical consequences of those conditions.

This distinction is critical.

A person may experience profound disability even where:

• the condition is complex;
• symptoms fluctuate;
• environmental factors influence severity;
• scientific understanding continues to develop.

Disability exists in the interaction between a person’s health condition and the barriers that restrict their ability to participate equally in society.

Where assessment systems become overly dependent upon diagnostic certainty, people with complex conditions may face a situation where they are repeatedly required to prove the legitimacy of their illness rather than receive a fair assessment of their functional limitations and support needs.

A disability system should distinguish between:

• the medical understanding of a condition;
• the existence of impairment;
• the impact of that impairment on daily life; and
• the supports required to enable participation.

These are related but separate considerations.

Consequences Beyond the Assessment Process

The consequences of prolonged non-recognition were significant.

The absence of appropriate disability support contributed to:

• increasing financial insecurity;
• inability to access suitable accommodation;
• worsening health circumstances;
• loss of stability and independence;
• significant personal and family disruption.

During this period, my circumstances deteriorated to the point where I experienced homelessness.

The inability to secure appropriate housing was particularly damaging because environmental conditions played a significant role in my ability to function.

• Unable to find a suitable living environment, I eventually lived remotely in my vehicle in an attempt to reduce exposure to environmental triggers and obtain basic stability.

• This was not a lifestyle choice.

• It was a consequence of having a disability that required environmental accommodation, while existing systems did not recognise or provide adequate pathways to achieve that accommodation.

• This experience demonstrates that accessibility is not limited to physical structures.

• For some people living with complex disabilities, accessibility includes having access to environments in which they can safely function, maintain health stability and participate in ordinary life.

2.4 Relocation and Recovery

After experiencing prolonged health deterioration, housing insecurity and significant personal loss, I temporarily relocated to New Zealand to stay with relatives who were able to provide a safer and more supportive environment.

This move provided an opportunity to focus on recovery and stabilisation.

However, the physical consequences of prolonged illness, combined with the impact of years of uncertainty, administrative struggle and loss of security, continue to affect my life.

My experience demonstrates why disability systems must consider not only impairment itself, but also the consequences that occur when appropriate recognition and support are delayed.

3. Environmental and Complex Chronic Disabilities: The Need for a Functional Approach

3.1 Introduction

A central issue raised by this submission is whether Australia’s disability systems are sufficiently equipped to recognise people whose impairments arise from complex, chronic and environmentally influenced health conditions.

Modern disability policy increasingly recognises that disability is not determined solely by diagnosis.

Rather, disability arises through the interaction between a person’s health condition and the barriers that restrict participation in everyday life.

This approach is consistent with the social model of disability and the principles contained within the United Nations Convention on the Rights of Persons with Disabilities (CRPD).

For people living with complex chronic illnesses, the greatest barrier is often not only the illness itself, but also the failure of systems, environments and institutions to accommodate their needs.

Conditions such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Multiple Chemical Sensitivity (MCS), Environmental Sensitivities/Electromagnetic Sensitivity (ES) and other multisystem illnesses present particular challenges because they may involve:

• fluctuating symptoms;
• multiple body systems;
• reduced tolerance to ordinary environmental conditions;
• delayed symptom worsening after exertion or exposure;
• substantial variation between individuals; and
• limited access to appropriately trained clinicians.

These characteristics require disability assessment systems that are capable of understanding complexity rather than relying solely on traditional models of impairment.

3.2 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

ME/CFS is a complex, disabling illness recognised internationally as a serious condition associated with significant impairment.

A defining feature commonly identified in contemporary clinical guidance is post-exertional malaise (PEM), where physical, cognitive or emotional exertion can result in a significant worsening of symptoms.

People living with ME/CFS may experience:

• severe and persistent fatigue not relieved by rest;
• cognitive dysfunction;
• sleep disturbance;
• autonomic symptoms;
• pain; and
• sensory sensitivity.

For some individuals, ME/CFS results in profound disability, including inability to maintain employment, difficulty undertaking daily activities and dependence on assistance for basic needs.

The severity of ME/CFS exists across a spectrum.

Some individuals remain partially functional, while others become substantially housebound or bedbound.

A disability assessment system that relies upon short clinical observations or a person’s ability to attend appointments may significantly underestimate the reality of this illness.

A person with ME/CFS may be able to attend a single appointment while still being unable to sustain employment, manage household responsibilities or participate consistently in community life.

Functional assessment must therefore consider a person’s capacity over time, not merely their presentation at a single point.

3.3 Multiple Chemical Sensitivity and Environmental

Sensitivities/Electromagnetic Sensitivity

Multiple Chemical Sensitivity (MCS) and Environmental Sensitivities/Electromagnetic Sensitivity (ES), also discussed in some literature under the broader term Idiopathic Environmental Intolerance (IEI), describe conditions in which individuals report adverse symptoms associated with exposure to commonly encountered environmental substances or conditions.

Reported triggers may include:

• fragrances;
• cleaning chemicals;
• solvents;
• pesticides;
• smoke;
• building materials;
• electromagnetic environments; and
• other environmental exposures.

People reporting MCS and ES describe a range of symptoms, which may include:

• headaches;
• respiratory symptoms;
• cognitive difficulties;
• fatigue;
• neurological symptoms;
• pain;
• impaired concentration; and
• reduced ability to function in ordinary environments.

The scientific discussion regarding the mechanisms underlying MCS and ES remains ongoing.

Different models have been proposed, including toxicological, neurological, immunological and sensory processing explanations.

However, the existence of ongoing scientific discussion about mechanisms should not prevent appropriate assessment of functional consequences.

“Has every mechanism been conclusively determined?”

The relevant question is:

“Does this person experience substantial limitations that affect their ability to participate in society?”

Disability systems are designed to respond to functional impact, not to resolve every medical controversy.

3.4 Environmental Sensitivities and the Importance of Accommodation

Some individuals with complex chronic illness report that their symptoms are significantly influenced by environmental conditions, including exposure to chemicals, pollutants, electromagnetic environments or other factors.

Regardless of differing views regarding mechanisms, the practical disability issue remains: Some individuals experience environments that become inaccessible because those environments worsen their symptoms and prevent participation.

This principle is already recognised within disability frameworks.

For example:

• A person with mobility impairment may require wheelchair access;
• A person with hearing impairment may require communication support.

Similarly, a person whose disability is significantly affected by environmental conditions may require consideration of environmental accommodation.

Accessibility cannot be limited to physical structures alone.

For some disabilities, accessibility includes consideration of the conditions required for a person to safely live, communicate, work and participate.

3.5 The Risk of Diagnostic Bias

One of the most significant concerns arising from my experience is the risk that people with complex chronic illness may experience diagnostic overshadowing.

Diagnostic overshadowing occurs when symptoms or impairments are incorrectly attributed to another explanation without adequate assessment.

For people with poorly understood conditions, this may result in:

• physical symptoms being dismissed;
• disability being underestimated;
• appropriate supports being delayed; and
• individuals being required to repeatedly justify their illness.

A fair disability system must avoid assuming that a condition is psychological merely because it is complex, fluctuating or difficult to measure using conventional tools.

At the same time, psychological support should not be viewed as incompatible with recognition of physical disability.

Many people living with serious chronic illness experience trauma, anxiety, depression or distress as consequences of prolonged illness and exclusion.

These experiences should be supported without replacing or dismissing the underlying disability.

A person can experience psychological consequences of disability while still having a genuine and substantial physical impairment.

3.6 The Principle for the NDIS

The key principle arising from this discussion is:

The NDIS should assess disability according to functional impact, not according to whether a person’s condition fits within a narrow category of medical certainty.

A future-focused disability system must be capable of responding to:

• emerging medical knowledge;

• complex chronic illnesses;
• fluctuating disabilities;
• environmental barriers; and
• individual support needs.

This approach does not require Parliament to resolve every scientific question.

It requires Parliament to ensure that Australians with substantial functional impairment are treated fairly.

3.7 Implications for the Bill

The proposed legislative changes provide an opportunity to strengthen the NDIS by ensuring that functional assessment remains central.

However, safeguards are required so that increased emphasis on assessment does not unintentionally disadvantage people with complex disabilities.

Assessment frameworks should explicitly recognise:

• variability over time;
• environmental barriers;
• cumulative impacts of multiple conditions;
• the importance of lived experience evidence; and
• the need for specialist knowledge where conditions are complex.

Without these safeguards, people with illnesses that challenge traditional assessment models may remain vulnerable to exclusion.

4. Evidence Base and Recognition in Medical Literature

4.1 Introduction

The purpose of this section is not to ask Parliament to resolve complex scientific debates concerning the mechanisms underlying every chronic illness discussed in this submission.

• Rather, it demonstrates that:

• several conditions associated with complex disability are recognised within international medical frameworks;

• these conditions can produce severe and enduring functional impairment; and

• disability systems must remain capable of responding to impairment even where scientific understanding continues to develop.

A fundamental principle of disability policy is that support should be determined by a person’s functional limitations and support needs.

Scientific uncertainty regarding mechanisms should not become a barrier to recognising disability.

Throughout medical history, many conditions now accepted within mainstream medicine were initially poorly understood.

Disability systems must therefore remain capable of responding fairly and compassionately while scientific knowledge continues to evolve.

4.2 International Recognition of ME/CFS

ME/CFS is increasingly recognised internationally as a serious, disabling, multisystem illness.

The condition is included within international disease classification systems and has been the subject of significant clinical and research attention.

The World Health Organization’s International Classification of Diseases (ICD) recognises ME/CFS within its classification framework.

The condition is also addressed in major clinical guidelines, including the United Kingdom’s National Institute for Health and Care Excellence (NICE) guideline on ME/CFS.

The NICE guideline recognises ME/CFS as a complex medical condition associated with significant impairment and highlights the importance of:

• recognising symptoms and lived experience;
• assessing severity;
• considering fluctuating capacity; and
• avoiding approaches that may worsen symptoms.

Similarly, the United States National Academy of Medicine (formerly the Institute of Medicine) concluded in its major review that ME/CFS is a serious, complex illness requiring recognition and further research.

These developments demonstrate an important principle:

A condition does not need to be fully explained at a biological level before the disability it causes can be recognised.

4.3 Functional Impact of ME/CFS

Research and clinical guidance identify that ME/CFS can significantly affect:

• employment;
• education;
• household responsibilities;
• social participation;
• mobility; and
• independence.

The severity of impairment varies considerably.

Some individuals remain capable of limited activity, while others experience severe disability requiring substantial assistance.

A key feature relevant to disability assessment is post-exertional malaise (PEM), where exertion may result in delayed and prolonged worsening of symptoms.

This creates particular challenges for conventional assessment methods.

A person may appear capable during a short assessment but experience significant deterioration afterwards.

Therefore, disability assessment must consider:

• sustainability of activity;
• recovery time;
• delayed symptom effects; and
• real-world functioning over time.

A fair system must assess what a person can consistently sustain, not merely what they can temporarily perform.

4.4 Recognition of Complex Chronic Illness

Many chronic illnesses involve multiple interacting systems and do not fit simple diagnostic categories.

Examples include conditions involving:

• immune dysfunction;
• neurological symptoms;
• autonomic dysfunction;
• inflammatory processes;
• chronic pain;
• sensory sensitivities; and
• fatigue syndromes.

For individuals experiencing multiple overlapping conditions, the combined functional impact may be greater than the effect of any single diagnosis.

Disability assessments should therefore avoid evaluating conditions separately without considering their cumulative effect.

A person does not experience disability as a list of diagnoses.

They experience disability as limitations in daily life, participation and independence.

4.5 Multiple Chemical Sensitivity and Environmental Sensitivities/Electromagnetic Sensitivity

MCS and ES remain areas of ongoing medical research and discussion.

Individuals reporting MCS describe symptoms associated with exposure to low levels of substances commonly encountered in everyday environments.

Published research has explored possible mechanisms including:

• neurological sensitisation;

• immune responses;
• inflammatory pathways;
• sensory processing;
• toxicological mechanisms; and
• interactions between biological and environmental factors.

Researchers and clinicians hold differing views regarding classification and causation.

However, an important distinction must be maintained:

Debate about mechanisms does not eliminate the need to address disability.

People reporting MCS and ES may experience substantial restrictions in:

• housing options;
• employment environments;
• access to public services;
• healthcare settings; and
• community participation.

A disability framework focused on participation barriers is better positioned to respond fairly than one dependent upon resolving scientific disagreement.

4.6 Electromagnetic Sensitivity and Environmental Exposures

ES, sometimes referred to as electromagnetic intolerance, is another area where individuals report symptoms associated with exposure to electromagnetic fields.

Reported symptoms vary but may include:

• fatigue;
• headaches;
• concentration difficulties;
• sleep disturbance;
• neurological symptoms;
• skin sensations; and
• general malaise.

The Scientific Literature on Electromagnetic Field Exposure

The scientific literature contains differing interpretations regarding the relationship between reported symptoms and electromagnetic field exposure.

World Health Organization’s Perspective

The World Health Organization has noted that individuals reporting ES experience real symptoms and that the condition presents challenges for affected individuals, while also noting that scientific evidence has not established electromagnetic fields as a confirmed cause of those symptoms.

This distinction is important.

A disability system does not need to determine causation in every individual case in order to assess whether a person experiences significant functional limitations.

Where a person experiences disabling symptoms associated with particular environments, fair assessment requires consideration of those functional consequences.

4.7 Research into Radiofrequency Exposure

Research into radiofrequency electromagnetic field exposure continues internationally.

Two frequently discussed research programs include:

• National Toxicology Program (United States)

  The United States National Toxicology Program conducted long-term animal studies examining exposure to radiofrequency radiation.

  The studies reported some evidence of increased tumour findings in certain exposure groups, particularly involving male rats.

  The interpretation and relevance of these findings to typical human exposure levels remains an area of scientific discussion.

• Ramazzini Institute Research

  The Ramazzini Institute in Italy conducted large animal studies examining long-term exposure to radiofrequency radiation.

These studies have also contributed to ongoing scientific discussion regarding possible

biological effects of radiofrequency exposure.

These research programs demonstrate that questions concerning environmental exposures and health effects remain active areas of scientific investigation.

For disability policy purposes, the key issue remains:

Individuals experiencing substantial functional impairment require fair assessment and support regardless of unresolved scientific questions about every possible mechanism.

4.8 The Role of Medical Uncertainty in Disability Assessment

Medical uncertainty is not unusual.

Many accepted medical conditions have evolved through decades of research.

A disability system that requires complete scientific certainty before recognising impairment risks creating injustice for people living with serious conditions during periods of developing knowledge.

The appropriate question for disability assessment is:

Does this person experience substantial and enduring limitations that affect their ability to participate independently in society?

This question is consistent with modern disability rights principles.

4.9 Summary

The evidence demonstrates that:

• ME/CFS is recognised internationally as a serious disabling condition;
• complex chronic illnesses can create substantial functional limitations;
• environmental sensitivity conditions remain areas of ongoing research but can involve significant participation barriers;
• scientific uncertainty should not prevent fair disability assessment; and

-​ disability systems must evaluate function, support needs and accessibility requirements.

The NDIS has an opportunity through this Bill to strengthen its commitment to fairness by ensuring that complex disabilities are assessed according to their real-world impact.

5. Human Rights Framework and Australia’s Legal Obligations

5.1 Introduction

Australia’s disability framework does not operate solely as an administrative system for determining eligibility and funding.

It exists within a broader human rights framework based on principles of equality, dignity, inclusion, accessibility and participation.

The National Disability Insurance Scheme (NDIS) was established with the objective of supporting people with significant and permanent disability to achieve greater independence, social participation and economic inclusion.

Any legislative reform affecting the NDIS should therefore be considered in light of Australia’s obligations under domestic law and international human rights commitments.

This is particularly important for people living with complex, fluctuating or less commonly recognised disabilities, who may face increased risk of exclusion when systems rely upon narrow assumptions about what disability should look like.

A sustainable disability system must not only be financially responsible. It must also remain consistent with the principles of fairness, equality and human dignity.

5.2 United Nations Convention on the Rights of Persons

with Disabilities

Australia is a party to the United Nations Convention on the Rights of Persons with Disabilities (CRPD).

The CRPD represents a significant shift in international disability policy. It recognises that disability is not solely a medical issue, but arises through the interaction between individuals with impairments and barriers within society.

The Convention requires States Parties to promote, protect and ensure the full and equal enjoyment of human rights by persons with disabilities.

Several principles within the CRPD are particularly relevant to this submission.

Article 3: General Principles

Article 3 identifies fundamental principles including:

• respect for inherent dignity;
• individual autonomy;
• non-discrimination;
• full and effective participation and inclusion;
• respect for difference;
• equality of opportunity; and
• accessibility.

These principles are directly relevant to people with complex disabilities whose needs may not fit traditional models of assessment.

A system that repeatedly requires individuals to prove that their conditions are legitimate, rather than assessing their actual barriers and support needs, risks undermining these principles.

Respect for difference requires recognition that disability does not present in one uniform way.

Some disabilities are immediately visible.

Others

Others involve fluctuating symptoms, complex interactions between conditions, environmental barriers or limitations that may not be apparent during brief assessments.

A rights-based system must be capable of responding fairly to this diversity.

Article 5: Equality and Non-Discrimination

Article 5 requires recognition that persons with disabilities are entitled to equal protection and benefit of the law without discrimination.

For people living with complex chronic illnesses, discrimination may occur not only through explicit exclusion, but also through systems that unintentionally disadvantage certain groups.

Examples may include:

• assessment processes that do not account for fluctuating disability;
• reliance on brief observations rather than sustained functioning;
• failure to consider environmental barriers; and
• assumptions based on diagnostic uncertainty.

Equality requires more than applying the same process to everyone.

Sometimes equality requires systems to recognise different circumstances and provide appropriate assessment approaches.

A process that appears neutral may still create unfair barriers if it does not account for the realities of particular disabilities.

Article 9: Accessibility

Article 9 recognises the importance of accessibility in enabling persons with disabilities to live independently and participate fully.

Accessibility is often understood in relation to physical infrastructure, such as buildings and transport.

However, accessibility also includes access to environments, services and systems that allow people with disabilities to participate.

For some individuals with complex chronic illness or environmental sensitivities, accessibility may involve consideration of:

• accommodation requirements;
• healthcare environments;
• workplace conditions;
• exposure-related barriers;
• communication arrangements; and
• assessment modifications.

A disability system should consider accessibility broadly, rather than narrowly.

For some people, the barrier preventing participation is not simply a physical obstacle. It may be an environment that worsens impairment or prevents safe engagement.

Article 19: Living Independently and Being Included in the Community

Article 19 recognises the equal right of persons with disabilities to live independently and participate in the community.

Suitable housing and appropriate supports are essential components of this right.

My own experience demonstrates the consequences when disability recognition does not occur in time.

The result was not merely an administrative outcome.

It contributed to:

- housing instability;
- loss of independence; and
- the need to seek alternative living arrangements overseas.

For people whose disabilities are affected by environmental conditions, appropriate housing may be a fundamental component of maintaining independence and participation.

A disability system that does not consider housing accessibility risks overlooking a central factor affecting a person’s ability to live safely and independently.

Article 25: Health

Article 25 recognises the right of persons with disabilities to enjoy the highest attainable standard of health without discrimination.

People with complex chronic illnesses often experience additional barriers within healthcare systems, including:

• limited specialist knowledge;
• fragmented care;
• uncertainty regarding diagnosis; and
• lack of coordinated support.

Disability systems should not replicate these barriers.

Instead, they should provide fair pathways for recognising functional impairment and support requirements.

A person should not be placed at a disadvantage because their medical circumstances require a more nuanced assessment approach.

Article 26: Habilitation and Rehabilitation

Article 26 emphasises access to services that enable persons with disabilities to attain and maintain maximum independence.

This principle supports consideration of innovative models of support, including accommodation and environmental approaches where appropriate.

My proposal for environmentally appropriate accommodation was developed from this principle:

That support systems should explore practical ways to improve independence and participation rather than merely respond after a crisis occurs.

A disability system should consider not only how to manage existing impairment, but also how environments and supports can enable people to achieve better outcomes.

Australian Disability Discrimination Principles

Australia has established legal protections against disability discrimination through legislation including:

• the Disability Discrimination Act 1992 (Cth);
• the National Disability Insurance Scheme Act 2013 (Cth); and
• associated disability standards and policy frameworks.

These frameworks reflect the principle that people with disabilities should have equal opportunity to participate in society.

Importantly, disability discrimination can occur through indirect barriers.

A process may appear neutral but still disadvantage people whose circumstances differ from the assumed norm.

For example, an assessment process that measures capacity only through short appointments may disadvantage people whose disability fluctuates or worsens after exertion.

Similarly, a process that requires a person to fit a conventional diagnostic model may disadvantage people living with complex conditions.

Fairness requires consideration of whether assessment methods themselves create barriers.

The Importance of Procedural Fairness

Procedural fairness is a fundamental principle of administrative decision-making.

People affected by disability decisions should have confidence that:

• relevant evidence is considered;
• decisions are based on appropriate criteria;
• assumptions are not substituted for evidence; and
• individuals have meaningful opportunities to explain their circumstances.

For people with complex chronic illnesses, procedural fairness is especially important because their disabilities may not be immediately visible.

A fair process must allow consideration of:

• medical evidence;
• lived experience;
• longitudinal history;
• functional limitations; and
• environmental barriers.

A person should not be disadvantaged because their disability requires a more sophisticated assessment approach.

Where complexity exists, the response should be better assessment—not reduced recognition.

A future disability system

A future disability system must ensure that increased administrative efficiency does not come at the expense of fairness.

Efficiency cannot be achieved by creating additional barriers for people whose disabilities are complex, fluctuating or difficult to assess.

The Bill should therefore include safeguards ensuring that:

• complex disabilities are assessed fairly;
• environmental barriers are considered;
• fluctuating conditions are recognised;
• lived experience evidence is valued; and
• assessment processes comply with principles of dignity and equality.

5.7 Summary

Australia’s disability obligations require more than the administration of payments and services.

They require a commitment to:

• equality;
• dignity;
• participation;
• accessibility; and
• inclusion.

People with complex chronic and environmentally influenced disabilities should not be excluded because their circumstances challenge conventional assessment models.

A strong NDIS must be capable of recognising disability wherever it exists.

Analysis of the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Introduction

The National Disability Insurance Scheme (NDIS) represents one of Australia’s most significant social reforms. Its purpose is to provide reasonable and necessary support to people with significant and permanent disability so that they may achieve greater independence, social participation and inclusion.

Any reform intended to secure the long-term sustainability of the NDIS is important and deserves careful consideration.

However, sustainability must not be achieved by creating additional barriers for people whose disabilities are complex, fluctuating, environmentally influenced or difficult to assess through traditional approaches.

The central principle advanced in this submission is that access to disability support should depend upon genuine functional impairment, barriers to participation and support needs.

People living with complex chronic illnesses are particularly vulnerable if assessment systems become increasingly reliant upon:

• narrow diagnostic categories;
• short-term observations;
• assumptions based on appearance or presentation;
• limited understanding of fluctuating disability;
• inadequate consideration of environmental barriers.

The proposed amendments provide an opportunity to strengthen the NDIS by embedding safeguards that ensure fairness, consistency and procedural justice for all Australians living with disability.

6.2 Functional Capacity Must Be Assessed in Real-World Context

Issue

The Bill places increased emphasis on functional capacity as a key component of disability assessment and planning.

Functional assessment is an appropriate and necessary principle. However, functional capacity cannot be accurately understood without considering the environment in which a person lives.

Disability does not occur in isolation.

It arises through the interaction between:

• a person’s impairment;
• their environment;
• available supports;
• accessibility barriers.

Risk

If functional capacity is assessed without adequate consideration of environmental factors, people with certain disabilities may appear less impaired than they are.

This is particularly relevant for people whose functioning varies according to:

• environmental exposures;
• physical demands;
• cognitive load;
• sensory conditions;
• recovery requirements.

For example, a person may be able to attend a short assessment appointment while remaining unable to sustain employment, maintain independent living or participate consistently in community life.

A brief observation may therefore fail to represent actual daily functioning.

Recommendation

The legislation should require functional capacity assessments to consider:

• functioning over time;
• symptom fluctuation;
• delayed consequences of exertion;
• environmental barriers;
• actual living circumstances.

Assessment should focus on what a person can consistently sustain, rather than what they may temporarily demonstrate under limited circumstances.

6.3 Assessment Must Not Depend on Diagnostic Certainty Alone

Issue

People living with complex chronic illnesses may experience difficulty obtaining recognition because their conditions do not always fit simple diagnostic models.

Risk

If assessment processes become overly dependent upon accepted diagnostic categories, individuals with substantial functional impairment may be excluded despite genuine disability.

This creates a situation where people are required to repeatedly establish the legitimacy of their diagnosis rather than receive fair assessment of the consequences of their impairment.

Recommendation

The NDIS should maintain a clear distinction between:

• diagnosis;
• impairment;
• functional limitation;
• support needs.

A person should not be denied recognition of disability solely because scientific understanding of their condition continues to develop.

Disability systems should assess the impact of disability, not attempt to resolve every unresolved question of medical causation.

6.4 Specialist Knowledge and Assessor Training

Issue

Complex chronic illnesses require appropriate understanding and expertise.

Conditions involving fatigue, neurological symptoms, pain, environmental sensitivity and fluctuating capacity may not be accurately assessed without relevant clinical knowledge.

Risk

Where assessors lack understanding of complex conditions, there is a risk of:

• underestimating impairment;
• misunderstanding symptom patterns;
• relying on inappropriate assumptions;
• overlooking environmental barriers.

Recommendation

The NDIS should ensure that assessment processes have access to appropriate expertise in:

• Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS);
• complex chronic illness;
• fluctuating disability;
• multisystem conditions;
• Environmental Sensitivities/Electromagnetic Sensitivity (ES) and Multiple Chemical Sensitivity (MCS), where relevant.

Training should emphasise that:

• visible presentation does not necessarily reflect severity;
• attendance at an appointment does not equal capacity for sustained participation;
• psychological consequences of illness do not invalidate physical disability.

6.5 Protecting Against Diagnostic Overshadowing

Issue

People with complex illnesses may experience diagnostic overshadowing, where symptoms or impairments are attributed to another explanation without adequate assessment.

Risk

This may result in:

• physical symptoms being dismissed;
• disability being underestimated;
• appropriate supports being delayed;
• loss of trust in assessment systems.

This risk is particularly significant for conditions involving multiple body systems or where objective biomarkers remain limited.

Recommendation

Assessment frameworks should require that:

• all relevant evidence is considered;
• psychological factors are not assumed to explain physical impairment without evidence;
• disability impact is assessed separately from debates about causation.

Mental health support and recognition of physical disability are not competing approaches. Both may be necessary.

6.6 Housing and Environmental Accessibility

Issue

Housing is a fundamental component of independent living.

For some people with complex disabilities, unsuitable environments can significantly worsen impairment and prevent participation.

Risk

A disability framework that does not consider housing suitability may fail to address a primary barrier to independence.

In my own circumstances, inability to access appropriate accommodation contributed to homeless-ness and eventual relocation.

Recommendation

The NDS should recogniZe that reasonabie and necessaY supports may include considera-tion of:

• appropriaTe accommodatioN environmenTs;
• modificaTions;
• flexibLe housIng solutioNs;
• innovatIve accommoDation models.

For some individuals, environmental accommodation may be essential to maintaining inde-pendence and participation.

6.7 The Importance of Early Intervention and Prevention of Crisis

Issue

Delayed recognition of disabilitv can result in worsening circumstancEs.

Risk

When appropriale supporis are unavailable, consequences may includE:

• homelesSnesS;

• deterioratiOn Of health;

• family breakdown;

• increased reliance on emergency services;

• loss of independenCe.

                                                                                            35
  

Recommendation

NDIS reform should include mechanisms that assist people before circumstances reach crisis point.

Early recognition and appropriate support can improve outcomes while reducing longer-term social and economic costs.

6.8 Valuing Lived Experience in Disability Policy

Issue

People living with disabilities possess knowledge that is essential to effective policy design.

Risk

When lived experience is dismissed, policies may fail to address real-world barriers.

Recommendation

The NDIS should strengthen mechanisms for incorporating lived experience expertise into:

• assessment design;
• service development;
• accommodation innovation;
• policy review.

People with disabilities should be recognised not only as recipients of services, but as contributors to solutions.

6.9 Summary of Key Concerns

The Bill provides an opportunity to improve the sustainability and effectiveness of the NDIS.

However, reform must ensure that:

• functional capacity is assessed in real-world contexts;
• complex and fluctuating disabilities are recognised;
• diagnostic uncertainty does not become a barrier to support;

• assessors have appropriate expertise;
• environmental barriers are considered;
• procedural fairness is protected;
• lived experience contributes to reform.

A sustainable NDIS must be both financially responsible and socially just.

Efficiency and fairness are not competing objectives. A system that accurately identifies and supports genuine disability is ultimately more sustainable because it prevents avoidable crises, exclusion and deterioration.

7. Proposed Legislative and Policy Recommendations

7.1 Introduction

The purpose of these recommendations is to ensure that reform of the NDIS strengthens fairness, accessibility and long-term sustainability.

A sustainable disability system must achieve two objectives simultaneously:

• responsible stewardship of public resources; and
• ensuring Australians with genuine and substantial disabilities are not excluded because their conditions are complex, fluctuating, uncommon or poorly accommodated by traditional assessment models.

The following recommendations are designed to improve assessment quality, procedural fairness and recognition of disability arising from complex chronic illness and environmental barriers.

Recommendation 1: Maintain Functional Impairment as the Primary Basis of Disability Assessment

The legislation should expressly confirm that eligibility and support decisions must be based on:

• functional impairment;

• impact on daily living;
• participation restrictions;
• support requirements.

Assessment should not depend solely on whether a diagnosis is universally accepted, easily measured or medically uncomplicated.

The purpose of disability assessment is to understand how a condition affects a persons life, ot to determine unresolved scientific debates.

Recommendation 2: Require Consideration of Environmental Barriers in Functional Assessment

Functional capacity should be assessed within the context of the person’s actual environment.

Assessment should consider:

• housing circumstances;
• workplace environments;
• accessibility barriers;
• relevant environmental factors;
• supports required to participate safely.

Capacity should not be assessed only under artificial or temporary conditions that do not reflect everyday life.

Recommendation 3: Recognise Fluctuating and Episodic Disabilities

Assessment frameworks should recognise that disability may involve:

• periods of increased impairment;
• delayed worsening following activity;
• variable capacity;
• unpredictable limitations.

Assessment should examine sustainable capacity rather than temporary ability demonstrated during a single appointment.

Recommendation 4: Separate Functional Assessment From Diagnostic Controversy

The NDIS should maintain a clear distinction between:

• the cause of a condition;
• the existence of impairment;
• support needs.

Scientific uncertainty should not prevent recognition of genuine disability.

Recommendation 5: Strengthen Specialist Assessment Pathways for Complex Disabilities

The NDIS should establish pathways for people with complex chronic conditions requiring specialised understanding.

Relevant expertise should include, where appropriate:

• ME/CFS;
• complex chronic illness;
• neurological and multisystem conditions;
• fluctuating disability;
• ES and MCS.

Assessment quality depends upon understanding.

People should not be disadvantaged because systems lack appropriate expertise.

Recommendation 6: Introduce Safegards Against Diagnostic Overshadowing

Assessment guidelines should include safegards against assumptions that complex physical symptoms are primarily psychological without appropriate evidence.

This does not diminish the importance of mental health support.

Recommendation 7: Improve Transparency and Procedural Fairness

People affected by disability decisions should receive clear explanations regarding:

• evidence considered;
• reasons for decisions;
• assessment methodology;
• review pathways.

Transparency improves trust and reduces unnecessary administrative disputes.

Recommendation 8: Ensure Lived Experience Evidence Is Properly Considered

Assessment frameworks should consider:

• daily functioning;
• symptom patterns over time;
• barriers encountered;
• practical consequences of impairment.

Lived experience evidence should not be treated as secondary merely because disability is not immediately observable.

Recommendation 9: Develop Appropriate Housing and Environmental Support Pathways

The NDIS should recognise that housing can be central to disability support.

Appropriate accommodation may be necessary to:

• prevent deterioration;
• maintain independence;
• enable participation;

• reduce crisis intervention.

Innovative accommodation models should be considered where appropriate.

Recommendation 10: Establish Research and Evidence Development Programs

Australia should invest in research relating to:

• ME/CFS;
• post-viral illness;
• environmental intolerance;
• disability assessment methods;
• accessible housing models.

Research should include perspectives of people living with these conditions.

Recommendation 11: Ensure Assessment Systems Remain Adaptive to Emerging Medical Knowledge

Disability frameworks must remain capable of responding to evolving science.

A responsible system should not require decades of certainty before responding to people experiencing significant impairment.

Recommendation 12: Establish Independent Review Mechanisms for Complex Cases

Where disability assessments involve significant complexity or disagreement, independent review by appropriately qualified professionals should be available.

This is particularly important where:

• multiple conditions interact;
• symptoms fluctuate;
• environmental factors affect functioning;
• conventional assessment methods may be inadequate.

Recommendation 13: Consider Environmental Accessibility Within the Concept of Inclusion

Accessibility should include more than physical infrastructure.

For some individuals, inclusion requires consideration of:

• sensory environments;
• chemical exposures;
• accommodation needs;
• flexible participation arrangements.

Recommendation 14: Measure NDIS Success by Outcomes, Not Only Administrative Efficiency

A successful disability system should measure:

• improved independence;
• reduced homelessness;
• increased participation;
• prevention of deterioration;
• improved quality of life.

Supporting people earlier can reduce long-term social and economic costs.

Recommendation 15: Preserve the Principle of Dignity in Disability Assessment

Every interaction with the disability system should uphold dignity and respect.

People seeking disability support are not merely applications to be processed.

They are Australians seeking recognition, independence and participation.

Conclusion to Recommendations

These recommendations do not seek preferential treatment for any particular diagnosis.

They seek a disability system capable of recognising reality:

Disability takes many forms.

Some disabilities are immediately visible. Others are complex, fluctuating, environmentally influenced or difficult to measure.

A fair and sustainable NDIS must recognise all Australians whose functional impairments substantially restrict their ability to participate in society.

8. A Lived Experience-Informed Solution: Environmentally Appropriate Accommodation and Recovery Support Model

8.1 Introduction

This submission does not seek only to identify shortcomings within existing disability systems. It also seeks to present constructive and practical solutions.

Throughout my experience navigating complex chronic illness, disability assessment processes and housing insecurity, I have become increasingly convinced that Australia requires innovative approaches to supporting people whose disabilities are significantly affected by environmental conditions.

For this reason, I have proposed the development of environmentally appropriate accommodation and recovery support models for people living with conditions such as Environmental Sensitivities/Electromagnetic Sensitivity (ES), Multiple Chemical Sensitivity (MCS), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and related complex chronic illnesses.

Section 8: Environmental Considerations

8.1 Introduction

This proposal is not intended to replace existing disability supports. Rather, it seeks to complement current approaches by exploring practical environments where people with complex disabilities may have the opportunity to stabilise, maximise their functional capacity, and participate more fully in life.

The purpose is to encourage disability policy to consider not only how support is delivered after people reach crisis point, but also how environments can be designed to prevent deterioration and promote independence.

8.2 The Rationale for Environmentally Appropriate Accommodation

For many people living with complex chronic illness, the home environment is not simply a place of residence. It can directly influence their ability to function, recover and participate in daily life.

A person may have access to medical care and disability support, but still remain unable to participate meaningfully if their living environment creates significant barriers to functioning.

Traditional disability accommodation models have appropriately focused on:

• physical accessibility;
• mobility requirements;
• personal care needs;
• assistive technology.

These supports remain essential. However, some disabilities require additional consideration of environmental factors, including:

• indoor air quality;
• chemical exposures;
• sensory environments;
• location accessibility;
• opportunities for low-stress recovery and stabilisation.

A broader understanding of accessibility would allow disability policy to respond more effectively to the diversity of disability experiences.

Accessibility

Accessibility is not limited to whether a person can enter a building or use a physical space. For some people, accessibility also includes whether the environment enables them to safely remain there, function within it and participate in society.

Proposed Environmentally Appropriate Accommodation Model

The proposed model would explore the development of supportive environments designed for individuals whose disabilities are significantly affected by environmental conditions.

Such environments could provide:

• suitable and accessible accommodation;
• reduced exposure to environmental factors that significantly affect functioning for those requiring such measures;
• opportunities for stabilisation and recovery;
• access to appropriate health and wellbeing supports;
• community connection;
• opportunities for research and evaluation of effective support approaches.

The intention is not to create segregation or isolation.

Rather, the goal is to create environments where people who have become excluded from ordinary settings may regain stability, independence and participation.

A disability system committed to inclusion should consider innovative pathways that allow people to reconnect with community life rather than remain excluded because existing environments are unsuitable.

Prevention Rather Than Crisis Response

My own experience demonstrates the consequences that can occur when disability recognition and appropriate accommodation are delayed.

When people cannot access appropriate supports early, the consequences may include:

• worsening health;
• housing instability;
• unemployment;

• family breakdown;
• social isolation; increased reliance on crisis services.

A preventative approach has the potential to reduce these outcomes.

Providing appropriate environmental support earlier may assist individuals to maintain greater independence, reduce deterioration and avoid circumstances where emergency intervention becomes necessary.

Investment in prevention is not only a compassionate approach. It is also consistent with responsible public policy because preventing crises can reduce longer-term social and economic costs.

8.5 Contribution to Disability Innovation

People living with disability are often viewed primarily as recipients of services.

However, lived experience is also a valuable source of knowledge, innovation and policy development.

This proposal emerged directly from experiencing barriers within existing systems and identifying practical opportunities for improvement.

People who live with complex disabilities often develop detailed understanding of:

• barriers within existing environments;
• gaps in service systems;
• practical solutions that may improve participation;
• approaches that support independence.

A disability system that values lived experience should recognise people with disability not only as users of services, but also as contributors to better systems and solutions.

8.6 Acknowledgement of Advocacy and Support

My advocacy has been strengthened by the work and compassion of many individuals and organisations who have supported people living with environmental illness and complex chronic conditions.

Acknowledgements

I acknowledge the contribution of the Australian Network for Research into Environmental Sensitivities (ANRES), including the work of Dr Sharyn Martin and reports developed through this initiative. I have participated in this work since 2019 and value its contribution to documenting experiences and concerns within the environmental sensitivity community.

I also acknowledge the work of EMR Australia and Dr Lyn McLean in supporting awareness and discussion regarding environmental health concerns.

I express my deep appreciation to Dr Maureen Busuttil, whose compassionate approach to care provided essential support during a period of significant vulnerability.

I also acknowledge psychologist Peter Davis for his professional knowledge, understanding and compassionate support relating to environmental illness.

I remain grateful to the many healthcare professionals who recognised the seriousness of my condition and the extent of my functional limitations, even where they faced limitations within existing diagnostic, regulatory and healthcare frameworks.

Their approach demonstrates the importance of ensuring that complexity is met with curiosity, respect and humanity.

Dedication and the Human Impact of Invisible Disability

I dedicate much of my advocacy work to the memory of my dear friend Maria Sergeant August, who also experienced severe health challenges associated with these conditions and whose life was profoundly affected by the difficulties faced by people living with invisible and poorly understood disabilities.

Her experience represents the human reality behind policy discussions.

When people living with severe disability experience prolonged hardship, disbelief, inadequate support and social isolation, the consequences can be devastating.

Remembering people like Maria strengthens my commitment to advocating for a system that recognises disability earlier, responds with compassion and ensures that no person is left without meaningful support because their disability is complex or difficult to understand.

8.8 Relevance to the NDIS Amendment Bill

The proposed accommodation model reflects broader objectives of disability reform, including:

• increasing independence;
• improving participation;
• preventing crisis;
• supporting innovation;
• recognising individual needs.

The NDIS should remain open to innovative approaches that respond to diverse disability experiences.

A future disability system should not only ask:

“How can we manage disability after it occurs?”

It should also ask:

“How can we create environments where people with disabilities have the greatest possible opportunity to live, participate and thrive?”

9. International Developments, Comparative Approaches and Lessons for Australia

9.1 Introduction

Australia is not alone in facing challenges associated with recognising and supporting people living with complex chronic illnesses, invisible disabilities and environmentally influenced conditions.

Across international jurisdictions, governments, courts, healthcare systems and disability organisations have considered how best to respond when individuals experience substantial functional impairment associated with conditions that may be medically complex, evolving, or subject to ongoing scientific discussion.

The international experience demonstrates an important principle:

Disability systems do not need to resolve every scientific question before they can respond fairly to people experiencing genuine functional limitations.

The central issue for disability policy is not whether every country classifies these conditions in the same way. Rather, the relevant question is:

How can societies ensure that people experiencing significant impairment are not excluded simply because their disabilities do not fit traditional models of recognition?

This principle is directly relevant to the future development of the National Disability Insurance Scheme (NDIS). A sustainable disability system must remain capable of responding to emerging forms of disability while maintaining appropriate standards of evidence and assessment.

9.2 The International Shift Towards a Rights-Based Disability Approach

International disability policy has increasingly moved away from a purely medical model of disability towards a rights-based approach.

This shift recognises that disability is not determined solely by a person’s diagnosis or

impairment. Rather, disability arises through the interaction between a person’s health condition and the barriers within their environment, institutions and society.

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) reflects this approach by emphasising:

• equality and non-discrimination;
• accessibility;
• participation and inclusion;
• reasonable accommodation;
• respect for dignity and individual autonomy.

A rights-based approach does not require all disabilities to present in the same way or to be supported by identical medical frameworks. Instead, it requires systems to respond fairly to the actual barriers experienced by individuals. For people living with complex chronic illnesses, this principle is particularly important because their disability may arise from the interaction between:

• symptoms and functional limitations;
• environmental barriers;
• accessibility challenges;
• reduced capacity to participate consistently in ordinary social and economic activities.

9.3 International Approaches to Environmental Sensitivities and Invisible Disabilities

International approaches to conditions such as Environmental Sensitivities (ES) and Multiple Chemical Sensitivity (MCS) vary considerably. Different jurisdictions have approached these issues through a range of frameworks, including:

• disability accommodation;
• workplace adjustments;
• occupational health;
• environmental health;
• social support systems;

-​ accessibility policy.

There is no single international model, and countries differ in how they classify, investigate or respond to these conditions.

However, an important common theme has emerged:

Disability systems increasingly recognise that the practical impact of a condition on participation may require consideration, even where scientific understanding of mechanisms continues to develop.

This distinction is central to this submission.

Recognition of functional impairment does not require a disability system to determine every unresolved question regarding causation. Rather, it requires assessment of whether an individual experiences substantial limitations and what supports may reasonably improve participation and independence.

9.4 France: Consideration of Functional Consequences in Individual Cases

France has experienced significant public, medical and legal discussion regarding Environmental Sensitivities, including electromagnetic sensitivity and related environmental intolerance concerns.

Some individual cases have involved consideration of whether people experiencing severe environmental sensitivities may qualify for disability-related recognition, workplace adjustments or social support.

These cases must be understood within their specific legal and factual contexts. They do not represent universal judicial recognition of a particular medical explanation.

However, they demonstrate an important principle:

Legal and administrative systems can consider the consequences of impairment and the needs of individuals, even where scientific discussions regarding underlying mechanisms remain ongoing.

This approach is consistent with a functional disability framework that focuses on participation, accessibility and support needs.

9.5 Sweden: Accessibility and Accommodation Approaches

Sweden has frequently been discussed internationally in relation to approaches to electromagnetic sensitivity and accessibility.

Swedish disability policy has traditionally placed strong emphasis on accessibility, participation and practical accommodation.

The broader lesson from this approach is not that one specific condition must be classified in a particular way.

Rather, it demonstrates that disability policy can focus on enabling participation through appropriate adjustments, even where medical classification remains complex.

This principle is relevant to the NDIS because many disability-related barriers arise not only from impairment itself, but from environments that fail to accommodate individual needs.

9.6 Spain and Other European Experiences

Spain and other European countries have also experienced legal, social and administrative discussions involving environmental sensitivity conditions and invisible disabilities.

As with France and Sweden, these examples should not be interpreted as demonstrating universal agreement regarding diagnosis or causation.

Instead, they illustrate a broader international trend:

Disability systems are increasingly required to consider:

• invisible disabilities;
• environmental barriers;
• individual circumstances;
• participation restrictions;
• reasonable accommodation.

The international experience suggests that disability policy is most effective when it remains adaptable and focused on practical outcomes.

9.7 Canada and the United States: Functional Impact and Accommodation Principles

Canada and the United States have generally approached many disability issues through rights-based frameworks focused on functional limitation and equal participation.

In these systems, disability recognition commonly considers whether an individual experiences substantial limitations affecting major life activities.

This approach reinforces a central principle:

The impact of a condition on a person’s ability to participate in life is a critical consideration, regardless of whether every aspect of the condition has been fully explained scientifically.

Accommodation frameworks in these jurisdictions also demonstrate the importance of considering environmental barriers.

A person may require adjustments because of the limitations they experience, not solely because of the existence of a particular diagnostic label.

9.8 Lessons from International Experience

The most relevant lesson for Australia is not that another country has adopted an identical approach.

The lesson is that modern disability systems must remain adaptable.

Across jurisdictions, people living with complex and less visible disabilities commonly report similar barriers, including:

• delayed recognition;
• limited specialist understanding;
• unsuitable environments;
• difficulty obtaining appropriate accommodation;
• assumptions based on appearance or conventional disability models.

A disability system designed only around conditions that are easily measured or universally understood risks excluding people whose disabilities are genuine but complex.

The challenge for modern disability policy

Therefore, it is necessary to maintain evidence-based assessment while ensuring that complexity does not become a reason for exclusion.

Scientific Development and the Evolution of Medical Understanding

Medical history demonstrates that scientific understanding develops over time.

Many conditions that are now recognised within mainstream medicine were previously poorly understood, lacked definitive testing methods, or involved significant debate regarding mechanisms.

This historical reality demonstrates that:

• absence of complete knowledge does not necessarily mean absence of illness;
• absence of a single diagnostic test does not necessarily mean absence of disability;
• uncertainty should encourage further research rather than prevent fair assessment.

For disability policy, the practical question remains: Does the individual experience substantial functional limitations, and what supports are required to enable participation and independence?

A responsible system can acknowledge scientific uncertainty while still responding fairly to people experiencing significant disability.

Implications for Australia and the NDIS

Australia has an opportunity to ensure that future NDIS reform reflects contemporary disability rights principles and international experience.

The NDIS should avoid developing a system where access depends primarily upon whether a condition is:

• easily measured;
• universally understood;
• supported by a single diagnostic model;
• familiar to every assessor.

Instead, assessment should continue to ask:

What functional limitations does this person experience?

What barriers restrict participation?

What supports are required?

What reasonable adjustments may improve independence and inclusion?

A future-ready NDIS must combine scientific responsibility with fairness, recognising that disability exists in many forms.

9.11 Summary

International experience demonstrates that complex disability requires flexible, evidence-informed and humane approaches.

While countries differ in how they classify particular conditions, there is increasing recognition that disability policy must focus on:

#  participation;
#  accessibility;
#  equality;
#  individual support needs.

Australia should ensure that NDIS reform does not unintentionally exclude people whose disabilities are complex, invisible, fluctuating or environmentally influenced.

The measure of a fair disability system is not only how effectively it supports people whose conditions are already well understood.

It is also how fairly it responds to people whose disabilities challenge existing assumptions.

10. The Role of Evidence, Research and Lived Experience in Future Disability Policy

10.1 Introduction

Effective disability policy must be built upon evidence. However, evidence is not limited to a single form of knowledge.

A robust disability framework requires the integration of:

• clinical and scientific research;
• professional expertise;
• administrative evidence;
• longitudinal understanding of disability;
• lived experience.

For people living with complex chronic illnesses and less visible disabilities, lived experience is particularly important because many disabling conditions cannot be fully understood through brief observations, isolated measurements or short assessment interactions.

The absence of complete scientific understanding should not result in the exclusion of people experiencing substantial impairment.

Instead, uncertainty should encourage:

• improved research;
• better assessment methods;
• collaboration between researchers, clinicians, policymakers and people with lived experience.

A future-ready disability system must be capable of responding to both established knowledge and emerging evidence.

10.2 The Importance of Patient and Community-Informed Evidence

People living with chronic illness often develop detailed knowledge of:

• symptom patterns;
• functional limitations;
• environmental barriers;
• factors that improve or worsen daily functioning;
• strategies required to maintain independence.

This knowledge does not replace scientific research or clinical assessment.

Rather, it complements those sources of evidence by providing important information about the lived reality of disability.

A modern disability system should recognise lived experience as valuable evidence regarding:

• participation barriers;
• accessibility requirements;
• effectiveness of supports;
• consequences of delayed assistance;
• practical impacts of impairment over time.

People with disabilities should not be viewed only as recipients of services. Their experiences can contribute directly to improving policy, assessment frameworks and service design.

Contribution to Environmental Sensitivity Research and Documentation

Since 2019, I have participated in work associated with the Australian Network for Research into Environmental Sensitivities (ANRES).

The purpose of this work has been to document experiences, concerns and challenges faced by people living with Environmental Sensitivities (ES), Multiple Chemical Sensitivity (MCS) and related conditions.

I acknowledge the contribution of Dr Sharyn Martin and the work undertaken through ANRES in attempting to better understand and document the experiences of people affected by environmental sensitivities.

Community-informed research of this nature is valuable because it captures aspects of disability that may not always be adequately represented through traditional healthcare systems or administrative processes.

Understanding the lived reality of disability can assist researchers, clinicians and policymakers in identifying:

• barriers to participation;
• gaps in support systems;
• opportunities for improved accommodation;
• areas requiring further investigation.

10.4 The Need for Independent and Multidisciplinary Research

Complex chronic illnesses require multidisciplinary research approaches.

No single discipline is likely to provide complete answers for conditions involving interactions between biological, environmental, psychological and social factors.

Research may need to consider relationships between:

• neurological processes;
• immune function;
• inflammatory pathways;
• environmental exposures;
• genetics;
• psychological wellbeing;
• social circumstances

10.5 The Importance of Healthcare Professional Recognition and Support

Throughout my illness journey, I encountered healthcare professionals who recognised the seriousness of my condition and attempted to provide compassionate care despite limitations within existing systems.

I acknowledge in particular:

• Dr Maureen Busuttil, whose humane and compassionate approach provided important support during a period of significant vulnerability;
• psychologist Peter Davis, whose professional knowledge and understanding of environmental illness provided meaningful assistance;
• the many other healthcare professionals who recognised the seriousness of my functional limitations.

Healthcare professionals working with complex chronic illness often face challenges including:

• limited research funding;
• gaps in specialist services;
• evolving diagnostic frameworks;

• Uncertainty within areas of medicine that continue to develop.

Supporting clinicians through improved education, research resources and multidisciplinary collaboration would assist both healthcare providers and people living with complex disabilities.

Better support for clinicians ultimately improves the quality and consistency of care available to individuals and families.

Avoiding the False Choice Between Scientific Rigour and Compassion

A responsible policy approach does not require choosing between scientific standards and compassion.

Both are essential.

Scientific rigour requires:

• careful evaluation of evidence;
• openness to uncertainty;
• continued investigation.

Compassion requires:

• listening to people experiencing disability;
• recognising the impact of impairment;
• avoiding unsupported assumptions;
• ensuring fair access to assessment and support.

These principles are not contradictory.

A mature disability system can acknowledge uncertainty while ensuring that people are not excluded from appropriate support while knowledge continues to develop.

Research Should Support Better Disability Assessment

Research should not focus only on understanding the causes of illness.

It should also examine how disability is experienced, measured and supported.

Important areas

Important areas include:

• methods for measuring functional impairment;
• assessment of fluctuating conditions;
• the impact of environmental barriers;
• approaches that improve participation outcomes;
• effectiveness of different support models.

For many individuals living with complex disabilities, the immediate policy question is not only:

“What caused this condition?”

It is also:

“What support enables this person to live with dignity and participate as fully as possible?”

Both research and disability policy should reflect this practical reality.

Understanding causes remains important. However, disability systems must also respond to the needs of people currently living with impairment.

10.8 The Role of Innovation

Innovation in disability policy should include:

• flexible assessment approaches;
• preventative support models;
• improved accommodation options;
• community-based solutions;
• collaboration with people who have lived experience.

Innovation often emerges because people affected by a problem understand barriers that systems have not yet fully recognised.

My proposed environmentally appropriate accommodation model is one example of a lived-experience-informed concept designed to explore practical responses to identified gaps.

A disability system that encourages responsible innovation is better positioned to respond to changing community needs and emerging evidence.

10.9 Implications for the NDIS Amendment Bill

The Bill provides an opportunity to strengthen Australia’s disability system by embedding principles that support:

• evidence-informed decision-making;
• ongoing research;
• recognition of emerging knowledge;
• meaningful involvement of people with disabilities.

A future-ready NDIS should not be based only on what is already known.

It should also have the capacity to adapt as evidence, understanding and community needs evolve.

Sustainability depends not only on responsible management of resources, but also on ensuring that assessment and support systems remain accurate, fair and responsive.

10.10 Summary

Evidence-based disability policy requires more than scientific literature alone.

It requires collaboration between:

• researchers;
• clinicians;
• policymakers;
• disability organisations;
• people with lived experience.

People living with complex disabilities should not be viewed only as subjects of research or recipients of services.

They should be recognised as contributors to improving systems, identifying barriers and developing practical solutions.

A disability framework that listens, learns and adapts will be better equipped to serve all Australians.

11. The Human Cost of System Failure: Lived Experience

and the Consequences of Delayed Recognition

11.1 Introduction

Disability policy is ultimately about people.

Behind every assessment decision, administrative process and legislative reform are individuals and families whose lives are directly affected by whether disability systems recognise impairment fairly and provide appropriate support.

My experience demonstrates that failures within disability recognition processes do not occur in isolation. When a person with substantial functional impairment cannot access timely recognition and support, the consequences may extend beyond financial hardship.

They may affect:

• housing security;
• health stability;
• relationships;
• independence;
• community participation;
• quality of life.

This section is included not as a request for sympathy, but as evidence of the practical consequences that can occur when disability systems are not sufficiently equipped to accommodate complex and less visible disabilities.

11.2 Deterioration of Health and Loss of Function

From 2019 onwards, my health progressively deteriorated.

The combined impact of ME/CFS, ES, MCS, inflammatory rheumatological disease and related health challenges significantly affected my ability to function across multiple areas of life.

The impacts included:

• reduced capacity to work consistently;
• difficulty maintaining ordinary daily activities;

• inability to tolerate many common environments;
• difficulty securing suitable housing;
• reduced social and economic participation.

Despite these limitations, obtaining recognition within disability systems remained extremely difficult.

The prolonged process of seeking assistance occurred during a period when my health was already significantly compromised.

For people living with complex disabilities, delays in recognition can create additional harm because the absence of support may itself contribute to worsening circumstances.

Housing Insecurity and the Consequences of

Inadequate Accommodation

One of the most significant consequences of inadequate recognition and support was housing instability.

For many people, housing is considered primarily a financial or social issue. For people with complex disabilities, housing can also be a health, accessibility and participation issue.

In my circumstances, finding an environment where I could safely manage my condition became increasingly difficult.

During the COVID-19 pandemic period, changes in residential environments, increased indoor activity and altered patterns of technology use coincided with a period in which my symptoms became increasingly difficult to manage.

Regardless of differing scientific perspectives regarding specific environmental mechanisms, The practical reality was that my living environment became increasingly unsuitable for my health needs.

Unable to secure appropriate accommodation within existing pathways, I experienced homelessness and was eventually forced to leave Australia.

This experience demonstrated a significant gap:

A person may have a genuine need for disability-related accommodation and environmental support while existing systems may not adequately recognise or respond to that need.

11.4 Personal Loss and Cumulative Impact

The prolonged experience of illness, uncertainty, financial pressure and housing insecurity had profound personal consequences.

During this period, I experienced:

• the breakdown of my marriage;
• severe personal loss;
• prolonged uncertainty regarding my future;
• significant emotional and psychological distress.

These experiences occurred alongside serious physical illness.

It is important to recognise that psychological distress in people living with severe chronic disability may arise as a consequence of:

• loss of independence;
• social isolation;
• inability to access appropriate support;
• uncertainty about the future;
• repeated experiences of not feeling understood or adequately recognised.

Mental health support is essential and should form part of comprehensive care.

However, psychological consequences should not be used to dismiss or replace assessment of physical disability.

A person may experience trauma and distress because they are living with disability and experiencing barriers to participation.

11.5 Relocation and Recovery

After exhausting available options, I temporarily relocated to New Zealand to stay with relatives who were able to provide support and a more suitable environment for recovery and stabilisation.

This move was not simply a lifestyle choice.

It was a response to circumstances where my health, housing and support needs could no longer be adequately managed within my previous situation.

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The opportunity to stabilise and begin recovery has been deeply valuable.

However, the physical effects of chronic illness, together with the cumulative impact of prolonged uncertainty, administrative difficulty and loss of security, continue to affect my life.

This experience highlights why disability systems must consider not only impairment itself, but also the consequences when recognition and support are delayed.

11.6 Remembering Those Lost Through Invisible Disability

My advocacy is also dedicated to the memory of my dear friend Maria Sargent August and to many others who have experienced severe health challenges associated with complex and invisible disabilities.

Her experience represents the human reality behind policy discussions.

Disability policy is not an abstract administrative exercise.

Behind every decision are people, families and communities.

When people living with severe disabilities experience prolonged exclusion, disbelief, inadequate support or social isolation, the consequences can be devastating.

Remembering these experiences strengthens the responsibility to build systems that:

• respond earlier;
• listen more carefully;
• assess fairly;
• provide appropriate support.

11.7 The Broader Lesson for Disability Reform

My experience demonstrates that delayed recognition of disability can create avoidable harm.

The consequences may include:

• deterioration of health;
• loss of employment;
• housing instability;
• homelessness;
• family disruption;

• increased reliance on crisis services;
• reduced independence.

A more responsive disability system has the potential to prevent these outcomes.

The purpose of reform should not simply be to improve administrative efficiency.

It should also ensure that people receive appropriate support before their circumstances reach crisis point.

Early and accurate recognition benefits not only individuals and families, but also the broader community by reducing avoidable social and economic costs.

11.8 Hope for Future Change

Despite the difficulties described in this submission, this contribution is made with hope.

Australia has the opportunity to develop a disability system that is more responsive, compassionate and evidence-informed.

I hope that sharing my experience can contribute to positive change so that future Australians living with complex, invisible and environmentally influenced disabilities do not encounter the same barriers.

A fair disability system should recognise disability wherever it exists.

It should provide pathways towards:

- dignity;
- independence;
- participation;
- inclusion.

The measure of reform is not only whether systems work for people whose disabilities are already well understood.

It is whether they remain capable of responding fairly when disability is complex, fluctuating or difficult to assess.

12. Conclusion and Final Recommendations to the

Committee

12.1 Conclusion

The National Disability Insurance Scheme represents one of Australia’s most significant commitments to ensuring that people living with significant disability have the opportunity to achieve independence, participation and inclusion.

As Parliament considers amendments intended to secure the future sustainability of the NDIS, it is essential that reform preserves the fundamental principle upon which the Scheme was established:

People with significant disabilities must be assessed fairly according to their functional impairment, support needs and barriers to participation.

This submission has highlighted the challenges faced by people living with complex, invisible and environmentally influenced disabilities.

My own experience demonstrates the consequences that can arise when disability systems struggle to recognise conditions that are complex, fluctuating or not easily accommodated within traditional assessment approaches.

Despite significant health challenges and evidence of substantial functional impairment, I experienced prolonged difficulty obtaining recognition and appropriate support.

The consequences extended beyond administrative processes.

They included:

• deterioration of health;
• inability to maintain ordinary participation;
• housing insecurity;
• homelessness;
• personal loss;
• forced relocation;
• ongoing physical, social and emotional impacts.

This experience highlights a broader issue.

A disability system can unintentionally exclude people when it relies too heavily on narrow assumptions about what disability should look like.

Some disabilities are immediately visible and easily measured.

Others are complex, fluctuating, less visible or affected by environmental circumstances.

A fair and sustainable disability system must be capable of recognising both.

12.2 The Central Principle for Future Disability Reform

This submission does not ask Parliament to resolve every scientific question relating to complex chronic illness, ES or MCS.

Medical knowledge develops over time.

Research continues.

Understanding evolves.

However, disability support should not be delayed until every question regarding causation or mechanism has been resolved.

The central question for disability policy should remain: Does this person experience substantial and enduring functional limitations that restrict participation in society, and what supports are necessary to enable greater independence and inclusion?

This approach is consistent with: - the purpose and principles of the NDIS; - Australian disability rights frameworks; - Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities.

A future-ready disability system must be able to recognise genuine disability while remaining open to emerging evidence and improving knowledge.

12.3 Final Recommendations

I respectfully request that the Committee consider the following recommendations:

1. Protect functional impairment as the foundation of disability assessment

Eligibility and support decisions should focus on:

• functional impairment;
• participation restrictions;
• support requirements;
• barriers affecting daily life.

Assessment should not depend solely on whether a diagnosis is universally accepted, easily measured or medically uncomplicated.

2. Ensure complex disabilities are assessed fairly

Assessment frameworks should recognise:

• fluctuating conditions;
• cumulative impairment;
• delayed consequences of exertion;
• environmental barriers;
• multiple interacting conditions.

Assessment should consider sustainable real-world functioning rather than isolated observations.

3. Improve expertise within disability assessment systems

People living with complex chronic illnesses should have access to assessment processes informed by appropriate clinical knowledge and understanding of complex disability presentations.

This should include awareness of:

• ME/CFS;
• complex chronic illness;
• multisystem conditions;
• fluctuating disability;
• ES and MCS where relevant.

4. Prevent exclusion caused by medical uncertainty

Scientific uncertainty regarding mechanisms or causation should not prevent recognition of substantial functional impairment.

Disability systems should assess the impact of disability rather than attempt to resolve every unresolved medical question.

5. Strengthen procedural fairness and transparency

Decision-making processes should ensure:

• transparent reasoning;
• proper consideration of relevant evidence;
• meaningful review pathways;
• respect for lived experience evidence.

People should understand how decisions affecting their lives have been reached.

6. Recognise accessibility beyond physical environments

Accessibility should include consideration of environmental and accommodation needs where these significantly affect participation.

For some people, access is not only about physical structures but also about the conditions required to live, work and participate safely.

7. Support innovative disability solutions

The NDIS should remain open to innovative approaches that improve independence and prevent crises.

This includes exploring appropriate accommodation models and other practical solutions developed through collaboration with people with lived experience.

8. Invest in research and evidence development

Australia should support independent research into:

• complex chronic illnesses;
• disability assessment methodologies;
• environmental accessibility;
• effective support models;
• long-term outcomes for people living with complex disabilities.

Research should include meaningful involvement from people with lived experience.

9. Include people with lived experience in disability reform

People living with disability should be recognised not only as recipients of services, but as contributors to:

• policy development;
• service design;
• research priorities;
• innovative solutions.

12.4 Final Statement

The strength of a disability system is not measured only by how it supports people whose conditions are already well understood.

It is measured by how fairly it responds to people whose disabilities challenge existing assumptions.

A future-ready NDIS must be sustainable.

However, sustainability must be built on fairness, accuracy and respect.

Efficiency and compassion are not opposing principles.

A system that recognises disability accurately, provides appropriate support earlier and prevents avoidable crises is ultimately stronger, more effective and more sustainable.

I respectfully ask the Committee to consider the experiences and recommendations presented in this submission and ensure that future NDIS reforms create a system where Australians living with complex, invisible and environmentally influenced disabilities are met with:

• recognition;
• dignity;
• fairness;
• meaningful support.

Thank you for the opportunity to provide this submission.

N Corina Curteanu

Annex A: Functional Impact Evidence Table: ME/CFS,

    ES, and Complex Chronic Conditions

Functional Domain	Evidence of Impairment / Symptom Impact	Activity Limitations	Participation Restrictions	Potential Support Needs
Energy regulation and stamina	ME/CFS and other complex chronic conditions may involve reduced energy capacity, persistent fatigue, reduced endurance, and impaired ability to sustain physical, cognitive, or sensory activity.
Post-exertional malaise (PEM)
may occur,
involving delayed worsening of symptoms following exertion.	Difficulty sustaining tasks, completing household activities, attending appointments, working consistently, studying, or managing routine activities without assistance with pacing support, planned rest periods, environmental adjustments, and recognition of fluctuating capacity.	Reduced ability to participate reliably in employment, education, social activities, community activities, and family responsibilities.	Flexible scheduling, assistance with daily activities, pacing support, planned rest periods, environmental adjustments, and recognition of fluctuating capacity.

Post-exertional malaise (PEM) and delayed symptom exacerbation

• Physical,
• cognitive,
• emotional, or
• sensory exertion may trigger worsening of symptoms, sometimes requiring extended recovery periods.
• Delayed symptom exacerbation may involve difficulty predicting available capacity, reducing ability to maintain consistent attendance at work, education, appointments, or community activities.
• Flexible arrangements, including reduced-demand periods, recovery time after activities, and planning based on available energy rather than fixed expectations are necessary during flares.

Reliability, consistency, and sustainability of function

• Functional capacity may vary significantly over time.
• A person may be able to complete an activity occasionally but not safely, repeatedly, or consistently.
• Difficulty maintaining routines, meeting deadlines, completing tasks within expected timeframes, or sustaining activity levels over consecutive days presents barriers to participation in employment, education, healthcare, and social roles.
• Assessment should focus on typical functioning rather than best days, with variable support levels, contingency planning, and recognition of recovery requirements.

Cognitive functioning (“brain fog”)

• Symptoms include:
  • Reduced concentration
  • Impaired information processing
  • Memory difficulties
  • Reduced mental stamina
• Barriers to employment, education, healthcare navigation, financial management, and independent living tasks arise from challenges such as reading comprehension, decision-making, managing paperwork, communicating complex information, or handling administrative duties.
• Assistance is required for organisation, reminders, communication support, simplified information delivery, additional processing time, and other related needs.

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Communication Cognitive fatigue, reduced processing speed, sensory overload, and symptom fluctuations may affect communication ability.

Difficulty participating in lengthy conversations, phone calls, meetings, appointments, or situations requiring rapid responses. Reduced ability to advocate for needs, maintain relationships, engage in workplace and educational environments, communicate options, additional time for responses, appointment preparation, and communication assistance. Written communication options, additional time for responses, appointment preparation, and communication assistance.

Physical mobility and activity tolerance Reduced physical capacity may affect walking tolerance, standing tolerance, lifting ability, balance, and recovery following activity. Difficulty shopping, cleaning, cooking, travelling, attending appointments, exercising, or completing personal care tasks during periods of increased symptoms. Reduced independence and reduced ability to access community activities, healthcare, and social connection services. Domestic assistance, transport support, mobility-related assistance where required, and practical supports for daily living.

Orthostatic Intolerance and Autonomic-Related Limitations

Some individuals experience symptoms associated with upright posture or autonomic dysfunction, which may affect standing tolerance, exertion, environmental tolerance, and prolonged upright activity.

Difficulty standing for extended periods, waiting in queues, showering, travelling, attending appointments, or completing tasks that require prolonged standing can lead to:

• Reduced access to workplaces, education, healthcare services, public spaces, community activities.
• Waiting times, flexible appointment arrangements, transport assistance, accommodations.

Seating options, reduced waiting times, flexible scheduling, and other accommodations are recommended to address these limitations.

Pain and Physical Symptom Burden

Chronic pain, headaches, muscle discomfort, joint pain, and other physical symptoms may contribute to difficulty completing physical tasks, concentrating, sleeping adequately, maintaining daily routines, and participating in work, education, household responsibilities, recreation, social activities.

Pain management support, pacing strategies, task assistance, and environmental adjustments are necessary interventions. Recognition of symptom variability is also important.

Reduced functional capacity and increased recovery needs should be considered as a result of chronic pain and related physical symptoms.

Sleep Disturbance and Non-Restorative Rest

Sleep disruption and non-restorative sleep may contribute to reduced daytime function, impaired cognition, and difficulties sustaining daytime activity and completing tasks requiring consistent energy.

This can impact participation in employment, education, healthcare appointments, and social commitments.

Flexible scheduling, recognition of altered sleep patterns, rest opportunities, and adjustments to activity expectations are essential for managing the effects of disrupted or non-restorative sleep.

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increased symptom severity.

Fluctuating and Symptoms may Difficulty maintaining fixed Challenges with Flexible supports, unpredictable vary significantly schedules employment variable symptoms over time with meeting deadlines volunteering contingency teriods of increased impairment that completing activities at a relationships assessment based on usual functional impairment cannot always be consistent level rather than occasional periods of higher capacity.

Environmental Some individuals Difficulty Reduced access Environmental accommodations, sensitivity and with tolerating to employment alternative service delivery options, environmental intolerance Environmental workplaces education low-trigger environments, symptoms associated sensitivity report healthcare housing options exposure reduction strategies, with environmental stimuli including healthcare settings public participation communication fragrances chemicals smoke transport retail environments shared indoor adjustment individualised noise light temperature extreme buildings May adjustments. exposure duration following exposure. The understanding of mechanisms varies while reported functional impacts may be significant.

Environmental

Environmental Environmental Difficulty planning Reduced ability Advance unpredictability conditions may activities due to to participate information about and exposure not always be uncertainty about reliably in work, environments, management predictable or environmental education, travel, flexible scheduling, controllable, conditions or healthcare, and alternative which may affect exposure risks. community arrangements, and symptom activities. contingency management and planning. participation.

Recovery Some individuals Reduced ability to Reduced ability Recognition of following report increased complete further to combine recovery periods, environmental symptoms activities after activities, such reduced-demand exposure following exposure events as attending scheduling, pacing exposure to and increased appointments support, and triggering need for rest or while assistance during environments and symptom maintaining periods of may require management. household, increased additional employment, or symptoms. symbolic social responsibilities.

Self-care and Fatigue, pain, Difficulty with Reduced Assistance with personal cognitive showering, independence personal care, meal management limitations, dressing, meal and increased preparation, sensory issues, preparation, reliance on household tasks, and symptom medication informal planning, and fluctuations may management, support. routine affect the ability household management. to complete organisation, or self-care maintaining consistently. routines during symptom flares.

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Domestic Activities and Household Management

Domestic activities and household management

Reduced energy availability, pain, cognitive limitations, and symptom exacerbation may limit the ability to complete household tasks safely and consistently.

Difficulty cleaning, shopping, cooking, laundry, gardening, and household maintenance may impact maintaining a safe, functional, and suitable living environment where appropriate, and practical living supports.

Housing and Environmental Suitability

Some individuals may require specific environmental conditions to reduce symptom triggers and maintain function, including consideration of indoor air quality, chemical exposures, noise, lighting, or other environmental factors.

Difficulty remaining in unsuitable housing environments or managing environmental factors within the home may result in reduced housing options, difficulty relocating, decreased community integration, and increased reliance on others.

Reasonable modifications, environmental adjustments, and practical support are necessary to maintain a suitable living environment.

Healthcare Access and Management

Healthcare Complex chronic conditions may require ongoing appointments, symptom monitoring, treatment coordination, and communication between healthcare providers.

Difficulty arranging appointments, travelling to services, communicating information, and managing treatment plans can lead to increased risk of unmet health needs and difficulty with appointment preparation.

Reduced access to healthcare coordination, transport support, flexible service delivery, and communication assistance are challenges faced.

Medication and Treatment Management

Medication Multiple treatments, symptom monitoring, changing management strategies may create cognitive and practical demands.

Difficulty organising medications, tracking complex treatment plans, following instructions for medication organisation, and managing healthcare paperwork is a challenge.

Increased dependence on others and need for administrative assistance, reminders, coordinated healthcare support, and flexibility in medication organisation arise from these difficulties.

Social Participation and Relationships

Social Reduced capacity, sensory limitations, pain, unpredictable symptoms may affect social engagement and relationship maintenance.

Difficulty attending gatherings, maintaining regular communication or participating in community activities leads to reduced ability to maintain relationships and experience social isolation.

Flexible participation options, support to access community activities safely, and assistance in maintaining social connections address the barriers related to social inclusion.

Employment and Education

Symptoms affecting energy, Difficulty sustaining hours, Reduced workforce adjustments, education opportunities, flexible arrangements, assistive technology, study supports, remote options where appropriate, and vocational assistance.

Travel and Transport

Travel may require significant physical, cognitive, and sensory effort and may expose individuals to unpredictable environments, or travelling without support.

Difficulty driving, using public transport, waiting, navigating unfamiliar environments, or tolerating workplace/study environments.

Transport assistance, flexible appointment arrangements, travel planning support, and accompaniment where required.

Independent Living Capacity and Safety

Combined effects of fatigue, cognitive impairment, pain, fluctuating symptoms, and environmental sensitivities may affect independent functioning and safety.

Difficulty managing multiple daily responsibilities, safely completing tasks, responding to changing circumstances, once again without assistance.

Increased dependence on family or informal carers, reduced autonomy, participation, and quality of life, including carer support where appropriate.

Informal support

Increased support Increased need for Reduced Formal supports, and carer needs may place assistance with independence respite options reliance ongoing demands daily activities, and potential where appropriate, on family transport, strain on recognition of members, friends, communication, informal support fluctuating support or informal household tasks, networks. needs, and carers, and healthcare coordinated care particularly management. planning.

cross-cutting consideration: Functional impact should be assessed in terms of capacity, reliability, repeatability, sustainability, and the consequences of exertion or environmental exposure. The ability to complete an activity occasionally does not necessarily indicate the ability to perform it consistently without symptom exacerbation or prolonged recovery.

summary of Functional evidence

The evidence base supports the following functional considerations:

• Diagnosis alone does not fully describe disability impact. The relevant issue for disability assessment is how symptoms affect everyday functioning, independence, participation, and access to community life.
• Fluctuation is a key feature of complex chronic conditions. A person’s capacity may vary significantly, and assessment should consider reliability, repeatability, and sustainability of function.
• Post-exertional worsening can create significant disability. The ability to complete an activity once does not necessarily demonstrate the ability to perform that activity consistently without significant consequences.
• Environmental barriers may contribute to disability. Accessibility, sensory environments, workplace expectations, healthcare settings, and community infrastructure may affect participation.
• Support needs should be linked to functional consequences. Evidence should describe the practical assistance required to maintain safety, independence, dignity, and participation.

Annex B: Evidence Base Table: References and Relevance

to Disability Assessment

Reference / Evidence Source	Key Evidence or Contribution	Relevance to Disability Assessment and Support Needs
United Nations Convention on the Rights of Persons with Disabilities (CRPD) (United Nations, 2006)	Establishes an international human rights framework recognising disability as arising from the interaction between impairments and barriers within society and the environment. Emphasises dignity, autonomy, equality, accessibility, participation, and inclusion.	Supports an assessment approach that considers functional limitations, environmental barriers, reasonable accommodations, participation restrictions, and the person’s need for supports rather than focusing only on diagnosis.
United Nations Committee on the Rights of Persons with Disabilities – General Comment No. 6 on Equality and Non-discrimination (2018)	Clarifies obligations relating to equality, non-discrimination, reasonable accommodation, and removal of barriers experienced by persons with disabilities.	Supports recognition that people with fluctuating, complex, or less visible disabilities may experience significant barriers requiring accommodations and supports.
World Health Organization (WHO) – International Classification of Diseases (ICD-11)	Provides an international classification framework recognising health conditions, including ME/CFS-related conditions, within global disease classification systems.	Supports recognition that internationally classified health conditions may result in significant functional impairment requiring disability-related assessment and support.

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World Health Organization (WHO)

Recognises disability as the Supports assessment based – Disability and Functioning result of interactions between on actual functioning and Framework impairments, activities, participation impacts rather than diagnosis alone.

Institute of Medicine / National Identified ME/CFS as a Academy of Medicine (2015). Beyond serious, complex, chronic Myalgic Encephalomyelitis/Chronic illness involving substantial Fatigue Syndrome: Redefining an functional impairment and Illness the need for improved recognition and research. employment, education, mobility, social participation, and independence.

National Institute for Health and Recognises ME/CFS as a Care Excellence (NICE) (2021). complex condition with variable severity, fluctuating symptoms, and individualised management needs. need for flexible disability supports.

Fukuda et al. (1994). Chronic fatigue Established widely used syndrome: A comprehensive clinical criteria for ME/CFS evidence supporting recognition and research and diagnosis. an investigation of ME/CFS as a distinct clinical condition. Annals of Internal Medicine, 121(12), 953–959.

Carruthers et al. (2003). Canadian Developed clinical criteria recognising symptoms prevalence in the general population: tincluding fatigue, neurological symptoms, sleep disturbance, pain, and post-exertional malaise. Journal of Chronic Fatigue syndrome.

National Institutes of Health (NIH)

Supports ongoing biomedical Demonstrates continued ME/CFS Research Programs research into ME/CFS page 1 international scientific investigation and recognition of ME/CFS as an area requiring further research.

Stussman et al. (2020). Examines post-exertional malaise (PEM), including symptom worsening following physical or cognitive activity. Relevant to disability assessment because PEM can create unpredictable limitations, reduced activity tolerance, and difficulty maintaining consistent participation.

Multiple Chemical Sensitivity (MCS)/ Idiopathic Environmental Intolerance (IEI) Research Literature Examines symptom patterns, sensory responses, n neurological mechanisms, environmental interactions, and functional impacts. Supports recognition that some individuals experience significant environmental triggers, resulting in limitations in work, education, housing, healthcare access, and community participation.

Bornschein et al. (2008). Investigated physical and psychological factors reported in people with idiopathic environmental intolerance. Provides peer-reviewed evidence regarding the complexity of IEI presentations and the importance of assessing functional impact.

Pall, M. L. – Research on the NO/ONOO− cycle and chronic multisystem illnesses Proposes biological mechanisms involving oxidative stress and inflammatory pathways in recognising that disability assessment should focus on

some chronic multisystem

demonstrated functional illnesses.

World Health Organization (WHO) – Electromagnetic Fields and Public Health: Electromagnetic Hypersensitivity

• Acknowledges that people reporting electromagnetic hypersensitivity experience real symptoms while noting that causal mechanisms remain under investigation.
• Supports consideration of reported symptoms and functional impacts while recognising current scientific uncertainty regarding causation.

National Toxicology Program (United States) (2018). Technical Report on Toxicology and Carcinogenesis Studies of Radiofrequency Radiation

• Reports findings from long-term animal studies examining radiofrequency radiation exposure.
• Provides evidence that radiofrequency exposure remains an area of scientific investigation and public health interest.

Falcioni et al. (2018). Long-term exposure to radiofrequency radiation in rats. Environmental Research.

• Reports findings from long-term radiofrequency exposure studies conducted by the Ramazzini Institute.
• Contributes to the broader evidence base concerning environmental exposure research.

Johansson, O. – Publications on electrohypersensitivity

• Research concerning reported symptoms and experiences associated with electromagnetic exposure.
• Relevant to understanding lived experience and reported functional limitations associated with environmental sensitivities.

Havas, M. – Publications on electromagnetic fields and environmental exposures

• Research and commentary concerning electromagnetic fields and reported health effects.
• Provides additional context regarding environmental exposure concerns and ongoing research.

Disability Discrimination Act 1992

Australian legal framework: Supports the need to prohibit disability discrimination and promote equal access and participation.

(Cth)

National Disability Insurance Scheme Act 2013 (Cth) Establishes the legislative framework for the NDIS and consideration of reasonable and necessary support.

Australian Human Rights Commission – Disability Rights Resources Provides guidance on disability discrimination, equality, accessibility, and human rights principles.

Australian Network for Research into Environmental Sensitivities (ANRES) Provides community research and documentation relating to environmental sensitities and lived experiences.

EMR Australia – Environmental Health Information Resources Provides community education resources relating to electromagnetic fields and environmental health concerns.

Overall Evidence Interpretation

Collectively, this evidence base demonstrates that:

• ME/CFS and related complex chronic conditions have been recognised internationally as legitimate areas of medical investigation.
• Functional impairment can occur regardless of whether all underlying mechanisms are fully established.
• Disability assessment frameworks are intended to consider the impact of symptoms on daily activities, participation, independence, and access to support.
• For complex and fluctuating conditions, assessment should consider variability, environmental barriers, energy limitations, symptom exacerbation, and the person’s actual support needs.