Submission 2885 — Name Withheld — NDIS Future Generations Bill

CONFIDENTIAL

Submission Regarding the NDIS Reform

Bill and Structured Assessment Models

Submitted by:

Submitted via confidential submitter details provided separately to the committee.

Request for Confidential Handling:

I request that this submission be published anonymously and that my personal details not be published on the committee website.

Reason:

This submission discusses sensitive personal disability, health, safeguarding, and system vulnerability concerns. Due to the risks associated with public identification while navigating ongoing disability support systems, I respectfully request anonymous publication.

Submission Regarding the NDIS Reform

Bill and Structured Assessment Models

Summary

This submission raises concerns regarding the proposed direction of NDIS reforms, including the increasing reliance on highly standardised and algorithm-based assessment systems such as I-CAN for participants living with severe, fluctuating, neurological, cognitive, psychosocial, communication, sensory, autonomic, and poorly understood disabilities.

The submission discusses:

• risks associated with structured and algorithm-based assessment systems,
• communication and cognitive impairment in severe ME/CFS,
• post-exertional malaise (PEM) and deterioration caused by administrative burden,
• limitations of rigid scoring systems for fluctuating disability,
• the importance of detailed treating clinical evidence,
• risks of participant isolation and reduced safeguarding,
• workforce instability and broader system destabilisation concerns,
• barriers to healthcare access and continuity of care,
• risks associated with prolonged under-support and unsafe support arrangements,
• emergency preparedness and participant safety concerns,
• and the importance of preserving stability, safety, continuity of care, safeguarding, and practical long-term support systems for participants living with severe and complex disabilities.

The submission also includes detailed lived-experience attachments outlining:

• neurological communication impairment,
• severe functional deterioration,
• profound mobility limitations,
• autonomic and neurological dysfunction,
• prolonged under-support,
• support instability,
• administrative burden,
• participant isolation,
• medical access barriers,
• and the current practical realities of living with severe ME/CFS within the NDIS system.

Contents

1. Main Submission
2. Key Concerns
3. Recommendations
4. Final Statement
5. Attachment A – Personal Statement Regarding Severe ME/CFS, Communication

Impairment, Structured Assessments, and System Stability

6. Attachment B – Supplementary Statement: Current Functional and Support Crisis

Submission to the Disability Reform

Ministerial Council and Reform Advisory

Committee

Overview

I am writing as an NDIS participant living with severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) with significant neurological, cognitive, communication, sensory, and fluctuating functional impairment.

I am deeply concerned not only about the proposed use of highly standardised or algorithm based assessment systems, including structured interview and scoring models such as I-CAN, but also about the broader long-term consequences these reforms may have across the disability, healthcare, allied health, support work, aged care, and community care sectors.

While I understand the importance of improving sustainability, accountability, and fraud prevention within the NDIS, I am concerned that reforms focused too heavily on administrative simplification, standardisation, cost reduction, and reduced supports may unintentionally destabilise both participants and the broader workforce systems surrounding disability care.

Many participants with severe, fluctuating, neurological, psychosocial, communication, cognitive, or poorly understood disabilities cannot be accurately assessed through brief structured interviews, rigid scoring systems, rapid self-reporting, or short observational assessments.

I am also concerned that sudden reductions in support stability, funding certainty, workforce sustainability, or service viability may contribute to:

• increased participant deterioration,
• growing pressure on hospitals and emergency systems,
• loss of experienced support workers and allied health professionals,
• increased workforce burnout,
• closure of smaller providers and specialist services,
• reduced trust across disability and healthcare sectors,
• and long-term instability within industries that many workers have invested years training to enter.

Many frontline workers, allied health professionals, support coordinators, carers, and disability providers entered these industries because they genuinely wanted to help vulnerable people live safely and with dignity. I am concerned that increasing instability, administrative pressure, workforce uncertainty, and inability to safely meet participant needs may create further emotional burnout and workforce loss across sectors that Australia already struggles to staff adequately.

I respectfully ask that reforms carefully consider not only short-term financial pressures, but also the broader human, workforce, healthcare, and economic consequences that may arise when vulnerable people, carers, workers, and support systems become increasingly destabilised.

Key Concerns

1. Communication and Cognitive Impairment My condition causes significant neurological communication impairment, cognitive dysfunction, delayed processing, memory impairment, and fluctuating language difficulties which worsen under fatigue, cognitive load, sensory overload, stress, and prolonged interaction.

This can affect:

• question interpretation,
• memory recall,
• communication accuracy,
• word retrieval,
• consistency of responses,
• and the ability to reliably explain functional impairment during structured assessments. Importantly, communication difficulties may not always be externally obvious. Participants may appear calm, articulate, polite, or superficially coherent while still experiencing severe functional impairment and significant neurological dysfunction.

I am concerned that participants with communication impairment, fluctuating cognitive function, psychosocial disability, acquired brain injury, autism, severe fatigue conditions, trauma-related communication difficulties, and other neurological disabilities may therefore be unintentionally under-assessed by highly standardised systems.

2. Fluctuating Disability and Post-Exertional Deterioration Severe ME/CFS involves profound post-exertional malaise (PEM), where cognitive, physical, neurological, and sensory functioning can significantly worsen following exertion.

For participants with severe ME/CFS and similar fluctuating conditions, the assessment process itself may worsen disability.

Repeated questioning, administrative burden, prolonged cognitive engagement, travel, interviews, decision-making, and self-advocacy can trigger severe deterioration and prolonged crashes.

I am concerned that brief assessment models may fail to accurately capture:

• delayed deterioration,
• fluctuating function,
• cumulative exhaustion,
• sensory intolerance,
• masking,

• cognitive fatigue,
• or the long-term consequences of overexertion. Importantly, emerging biomedical research increasingly suggests that ME/CFS is a serious multisystem biological illness involving neurological, immunological, autonomic, and metabolic dysfunction, with some researchers drawing comparisons to the complexity and functional impact seen in conditions such as Multiple Sclerosis (MS) and Lupus. This further reinforces the importance of ensuring that severe ME/CFS is not assessed through outdated assumptions, oversimplified behavioural interpretations, or rigid functional scoring systems that fail to capture the true complexity and severity of the condition.

3. Reduced Reliance on Treating Clinical Evidence I am deeply concerned about the broader shift away from detailed evidence provided by treating clinicians and allied health professionals toward simplified interview and scoring systems.

Participants with severe and fluctuating disabilities often require detailed longitudinal evidence from clinicians who understand:

• functional decline,
• communication impairment,
• fluctuating presentation,
• cumulative deterioration,
• and the practical impact of disability over time. I believe detailed clinical evidence must remain central to decision-making processes.

4. Concerns Regarding Validation and Representation To my understanding, participants living with severe ME/CFS and similar complex fluctuating neurological disabilities were not meaningfully represented within the original trial process or broader validation of these assessment systems.

This raises concern regarding whether these systems have been adequately tested for participants who experience:

• profound post-exertional deterioration,
• fluctuating neurological impairment,
• delayed processing,
• cognitive-linguistic dysfunction,
• communication inconsistency under fatigue,
• sensory intolerance,
• and inability to reliably self-report under sustained cognitive load.

5. Broader System Risks My concerns extend beyond assessment systems alone.

I am concerned that reforms which reduce continuity, participant oversight, trusted support relationships, or multidisciplinary involvement may unintentionally increase participant isolation and weaken safeguarding systems.

Reducing:

• oversight,
• coordination,
• continuity,
• trusted support teams,
• and participant stability, does not automatically reduce corruption or misuse.

In some cases, it may unintentionally increase hidden exploitation because participants become:

• more isolated,

• more cognitively overloaded,

• less able to monitor invoices,

• less able to challenge unsafe practices,

• less able to navigate complaints systems,

• and less visible overall. I am also concerned that increasing instability within the disability sector may contribute to:

• workforce burnout,

• loss of experienced workers,

• closure of smaller providers,

• reduced trust across healthcare and disability sectors,

• and long-term workforce instability across industries Australia already struggles to staff adequately.

Disability funding also circulates through the broader economy by:

• supporting workforce participation,
• sustaining allied health and care industries,
• reducing pressure on hospitals and emergency systems,
• supporting carers,
• and helping prevent more expensive crisis outcomes later. Preventative support and stability often reduce far greater long-term human and financial costs over time.

6. Real-World Consequences of Under-Assessment For participants living with severe and complex disabilities, under-assessment can have serious consequences including:

• worsening deterioration,
• inability to maintain hygiene or nutrition,
• unsafe housing,
• increased isolation,
• loss of medical access,
• preventable hospitalisation,
• and long-term loss of function. Stable support is not simply about comfort or convenience. In many cases, it is what prevents crisis escalation, further deterioration, institutionalisation, and long-term system failure.

Recommendations

I respectfully request that:

• detailed clinical evidence from treating professionals remains central to NDIS decision-making,

• fluctuating neurological and communication disabilities are properly recognised within assessment processes,

• specialist expertise is involved when assessing complex neurological and fluctuating disabilities,

• safeguards are introduced for participants with cognitive and communication impairment,

• highly standardised scoring systems are not used as a substitute for detailed clinical understanding,

• continuity of care and participant safeguarding remain central to reform processes,

• and no assessment model is implemented without meaningful consultation and validation involving participants living with severe and complex fluctuating disabilities, including severe ME/CFS.

Final Statement

I understand that governments face enormous pressure balancing economic realities, workforce shortages, rising service demand, and the long-term sustainability of national support systems.

I do not believe most people involved in these reforms intend harm. However, I am deeply concerned that systems designed around averages, efficiency targets, administrative simplification, and rapid standardisation may unintentionally overlook the realities faced by those living with severe, complex, fluctuating, or poorly understood disabilities.

For many participants, the consequences of reduced stability are not abstract policy outcomes. They are:

• missed meals,
• inability to maintain hygiene,
• unsafe housing,
• worsening isolation,
• loss of medical access,
• preventable deterioration,
• exhausted carers,
• unsupported workers,
• and people becoming increasingly invisible within systems they are too unwell to navigate safely.

Many disabled people already spend enormous physical, cognitive, and emotional energy simply surviving day to day. Outward calmness, politeness, humour, resilience, or determination should not be mistaken for lack of suffering or lack of need.

I respectfully ask that decision-makers pause long enough to hear the voices of participants who are often too exhausted, cognitively impaired, isolated, or unwell to advocate consistently for themselves.

Stable support is not only about dignity and quality of life. In many cases, it is what prevents further deterioration, crisis escalation, hospitalisation, institutionalisation, workforce collapse, and long-term system strain.

Historically, periods of financial pressure often place the greatest burden on those who are already most vulnerable. I respectfully ask that these reforms do not unintentionally do the same.

I believe reform should focus not only on financial sustainability, but also on preserving humanity, safety, trust, workforce stability, and practical long-term support systems for the people the NDIS was originally designed to protect.

Attachments

Please also refer to:

Attachment A – Personal Statement Regarding Severe ME/CFS,

Communication Impairment, Structured Assessments, and System Stability

This attachment provides detailed lived-experience evidence regarding:

• neurological communication impairment,
• cognitive dysfunction,
• post-exertional malaise,
• fluctuating function,
• assessment accessibility concerns,
• administrative burden,

• participant isolation,
• safeguarding concerns,
• and broader system risks affecting participants living with severe ME/CFS and similar complex disabilities.

Please also refer to:

Attachment B – Supplementary Statement: Current Functional and Support

Crisis

This attachment provides additional lived-experience evidence regarding the severe functional, medical, and safety impacts of living with severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and related complex disabilities.

It outlines the practical consequences of prolonged under-support, including:

• severe physical deterioration,

• inability to consistently access food, water, hygiene, and medical care,

• profound mobility impairment,

• autonomic and neurological dysfunction,

• unsafe support arrangements,

• lack of emergency preparedness,

• worsening isolation,

• and increasing risks associated with inadequate support systems and prolonged instability. This attachment also addresses broader concerns regarding:

• participant safety,

• safeguarding failures,

• workforce instability,

• continuity of care,

• emergency risk,

• participant isolation,

• and the potential consequences of reforms that may further reduce stability for highly vulnerable participants already living in medically fragile circumstances.

This attachment should be read alongside Attachment A – Personal Statement Regarding Severe ME/CFS, Communication Impairment, Structured Assessments, and System Stability.

Thank you for considering my submission.

Attachment A

Personal Statement Regarding Severe ME/CFS,

Communication Impairment, Structured

Assessments, and System Stability

This statement is provided as supporting lived-experience evidence regarding the potential impact of proposed NDIS reforms, highly standardised assessment systems, and broader structural changes affecting participants living with severe, complex, fluctuating, neurological, cognitive, psychosocial, communication, and poorly understood disabilities.

While this statement discusses concerns regarding structured assessment systems such as I CAN, my concerns extend more broadly to the overall direction, pace, and implementation of reforms that may unintentionally reduce participant safety, increase isolation, weaken safeguarding structures, destabilise trusted support relationships, and oversimplify the realities of severe disability.

I respectfully ask that this statement be considered not only as an individual account of severe disability, but also as an example of the wider risks that may arise when highly vulnerable people are assessed, supported, or governed through systems that become too simplified for vulnerable human reality.

Living with Severe ME/CFS and

Fluctuating Neurological Disability

I live with severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) with significant neurological impairment, post-exertional malaise (PEM), cognitive dysfunction, communication impairment, sensory intolerance, and profoundly fluctuating functional capacity.

My treating professionals have documented that cognitive load, communication demands, administrative burden, sensory overload, stress, and overexertion can significantly worsen my condition and trigger prolonged deterioration.

Severe ME/CFS is not simply “fatigue.” It is a complex neurological and systemic illness that can affect:

• cognition,
• speech and language processing,
• memory,
• sensory tolerance,
• physical functioning,
• autonomic regulation,
• mobility,

• concentration,
• communication,
• and the body’s ability to recover from exertion. Function can fluctuate dramatically depending on cognitive demand, sensory input, environmental stress, overexertion, infection exposure, emotional strain, sleep disruption, administrative burden, and cumulative post-exertional worsening.

Many of the most disabling aspects of my condition are not consistently visible during short interactions and may worsen significantly after exertion has already occurred.

Importantly, emerging biomedical research increasingly suggests that ME/CFS is a serious multisystem biological illness involving neurological, immunological, autonomic, and metabolic dysfunction, with some researchers drawing comparisons to the complexity and functional impact seen in conditions such as Multiple Sclerosis (MS) and Lupus. This further reinforces the importance of ensuring that severe ME/CFS is not assessed through outdated assumptions, oversimplified behavioural interpretations, or rigid functional scoring systems that fail to capture the true complexity and severity of the condition.

This creates serious concern regarding highly standardised systems that rely heavily upon:

• rapid self-reporting,
• structured interviews,
• brief observation,
• rigid scoring systems,
• or assumptions that outward presentation reflects actual long-term functioning.

Neurological Communication Impairment

and Cognitive Dysfunction

One of my greatest concerns regarding highly standardised or algorithm-based assessment systems is that participants like myself may not be able to reliably communicate our true level of impairment during structured interviews or assessments.

When severely fatigued, I experience a neurological language and communication disorder associated with ME/CFS that affects:

• language assembly,
• question interpretation,
• working memory,
• word retrieval,
• organisation of thoughts,
• communication accuracy,
• memory recall,
• concentration and focus,
• and my ability to reliably explain my own functioning.

Importantly, my speech and writing may appear superficially fluent or complete even when the meaning being communicated is inaccurate, incomplete, unintentionally intensified, or entirely different from what I was actually trying to express.

My brain often struggles to construct new language from scratch under fatigue. Instead, it pulls together fragments of previously stored sentence structures and emotionally-tagged language patterns because these require less cognitive effort to access. As a result, my sentences may sound coherent while still communicating the wrong meaning.

I may:

• misunderstand questions as they are asked,
• lose track of meaning mid-conversation,
• answer a different question from the one intended,
• accidentally minimise or misstate impairment,
• use incorrect or substituted words,
• unintentionally contradict myself,
• provide inconsistent answers,
• forget important information,
• or communicate the opposite of what I truly mean. It can sometimes take me days or even weeks to fully understand complex questions properly. I often require assistance from support workers or allied health professionals to help explain questions, organise information, and accurately describe my functioning because I cannot reliably retain or reconstruct memory regarding the severity, frequency, or cumulative impact of my impairments over time.

These difficulties are not indicative of low intelligence, unwillingness to participate, lack of effort, or lack of insight. My reasoning ability remains intact. The impairment lies in neurological processing, communication organisation, language assembly, working memory, delayed processing, and cognitive endurance under severe fatigue conditions.

I also rely heavily on assistive tools, including AI systems, to help me communicate what I am trying to say. However, this process itself is extremely cognitively demanding and time consuming due to the neurological impairments caused by ME/CFS. I may spend days or weeks attempting to explain concepts clearly, reviewing wording repeatedly, correcting misunderstandings, and ensuring that what has been written accurately reflects my intended meaning and lived experience.

Because misunderstandings can have serious consequences for my care, safety, supports, housing, medical access, and wellbeing, I often need to repeatedly reread, reassess, and revise information over extended periods in order to ensure it accurately reflects what I am genuinely trying to communicate.

Post-Exertional Malaise (PEM) and the

Harm Caused by Administrative Burden

For people with severe ME/CFS, overexertion can trigger Post-Exertional Malaise (PEM), sometimes referred to as a “crash,” which involves a severe and often prolonged worsening of symptoms and dramatic loss of function.

PEM is not a minor increase in tiredness. It is the core pathological feature of ME/CFS and can cause profound deterioration in:

• neurological functioning,
• cognition,
• communication,
• mobility,
• sensory tolerance,
• autonomic stability,
• physical endurance,
• and the ability to safely perform even basic daily tasks. In severe cases, repeated or prolonged PEM can become medically dangerous and may lead to substantial long-term loss of baseline functioning.

Importantly, these impairments worsen significantly under:

• pressure,
• prolonged interaction,
• cognitive overload,
• stress,
• sensory input,
• repeated questioning,
• administrative burden,
• travel,
• overexertion,
• disruption to strict pacing routines,
• or situations where I am pushed beyond my functional limits. A major concern is that participants with severe ME/CFS are often required to continue engaging in cognitively and administratively demanding processes even while already in PEM or rolling PEM due to inadequate supports and the necessity of navigating complex systems in order to access essential care and assistance.

The cumulative burden of:

• repeatedly answering questions,
• explaining impairments,
• attending assessments,
• reviewing documents,
• organising evidence,
• managing providers,
• correcting errors,
• processing information,
• making decisions,
• and attempting to advocate for oneself, can itself continuously trigger or worsen PEM.

By the time many participants with severe ME/CFS reach formal planning or assessment stages, they may already be experiencing substantial deterioration from the prolonged exertion required simply to participate in the process.

Further demands at that stage do not merely risk discomfort or temporary symptom worsening. They may precipitate an additional severe crash with serious consequences for:

• health,

• communication capacity,

• mobility,

• cognition,

• safety,

• and overall functioning. Preventing deterioration therefore requires:

• strict pacing,

• careful energy management,

• minimisation of cognitive and sensory stress,

• reduction of unnecessary administrative burden,

• and stable access to appropriate supports that reduce the need for repeated self-advocacy.

Concerns Regarding Highly Standardised

Assessment Systems

I am deeply concerned about the broader shift away from detailed evidence provided by treating clinicians and allied health professionals toward highly standardised interview and scoring systems.

Participants with severe and fluctuating disabilities often require detailed longitudinal evidence from clinicians who understand:

• fluctuating presentation,
• communication impairment,
• delayed deterioration,
• cumulative exhaustion,
• masking,
• sensory intolerance,
• and the practical realities of living with complex disability over time. To my understanding, people living with severe ME/CFS and similar fluctuating neurological conditions were not meaningfully represented within the original trial process or broader validation of these assessment systems.

This raises serious concern regarding whether such systems have been adequately tested for participants who experience:

• profound post-exertional deterioration,

• fluctuating neurological impairment,

• cognitive-linguistic dysfunction,

• delayed processing,

• communication inconsistency under fatigue,

• sensory intolerance,

• or inability to reliably self-report under sustained cognitive load. A major concern is that assessment systems relying heavily upon:

• structured interviews,

• rigid scoring systems,

• brief observations,

• or algorithmic interpretation, may unintentionally prioritise surface presentation over complex functional reality.

Participants with neurological, cognitive, psychosocial, communication, or fluctuating disabilities may appear:

• calm,
• articulate,
• polite,
• compliant,
• humorous,
• determined,
• or temporarily functional, while still being profoundly impaired in daily life.

An assessment score alone cannot accurately capture:

• post-exertional deterioration,
• masking,
• cognitive overload,
• communication breakdown,
• sensory distress,
• delayed processing,
• trauma responses,
• fluctuating neurological function,
• or the delayed consequences of exertion.

Broader System Concerns

My concerns extend beyond assessment systems alone.

I am deeply concerned about the broader long-term consequences these reforms may have across the disability, healthcare, allied health, support work, aged care, and community care sectors.

While I understand the importance of improving accountability, reducing waste, and addressing fraud within the NDIS, I am concerned that reforms focused too heavily on rapid standardisation, administrative simplification, reduced supports, and cost reduction may unintentionally destabilise both participants and the broader systems surrounding disability care.

Reducing:

• oversight,
• support coordination,
• continuity of care,
• trusted support relationships,
• multidisciplinary involvement,
• and participant stability, does not automatically reduce corruption or misuse.

In some cases, it may unintentionally increase hidden exploitation because participants become:

• more isolated,
• more cognitively overloaded,
• less able to monitor invoices,
• less able to challenge unsafe practices,
• less able to safely exit harmful provider relationships,
• less able to navigate complaints systems,
• and less visible overall. Many participants living with severe disability already struggle to safely navigate complex systems, manage providers, identify inappropriate behaviour, organise paperwork, advocate for themselves, or access complaints pathways.

When supports become increasingly fragmented or unstable, safeguarding structures may weaken further.

This not only creates risks for participants themselves, but may also make it harder for the broader system to detect:

• inappropriate billing,

• neglect,

• poor-quality care,

• exploitative behaviour,

• unsafe practices,

• or systemic failures before greater harm occurs. I am also concerned that rapid destabilisation within the disability sector may contribute to:

• increased workforce burnout,

• loss of experienced workers,

• closure of smaller providers,

• reduced trust in disability and healthcare industries,

• and long-term workforce instability across sectors Australia already struggles to staff adequately.

Many frontline workers, allied health professionals, support coordinators, carers, and providers entered these industries because they genuinely wanted to help vulnerable people live safely and with dignity.

I am concerned that increasing instability, workforce uncertainty, administrative pressure, and inability to safely meet participant needs may contribute to further emotional exhaustion and workforce loss across disability, healthcare, and community support systems.

Disability funding also circulates through the broader economy by:

• supporting workforce participation,
• sustaining allied health and care industries,
• reducing pressure on hospitals and emergency systems,
• supporting carers,
• and helping prevent more expensive long-term crisis outcomes. Preventative support and stability often reduce far greater long-term human and financial costs later.

Real-World Impact on My Life

In my own life, reduced support stability does not simply mean inconvenience. It affects whether I can:

• safely access food and water,
• maintain hygiene,
• attend essential medical appointments,
• manage continence and daily care needs,
• safely evacuate during bushfires or emergencies,
• access respite safely,
• remain safe within my own home,
• or safely navigate medical and administrative systems. I already live with profound exhaustion, neurological dysfunction, communication impairment, severe physical limitation, sensory intolerance, and significant isolation.

The ongoing instability, administrative burden, repeated reassessment processes, and continual need to prove disability can themselves worsen my condition and reduce my ability to function safely.

For participants living with severe ME/CFS and similar conditions, the consequences of under assessment or loss of support stability are not minor. Reduced supports may lead to:

• worsening deterioration,
• inability to maintain hygiene or nutrition,
• increased isolation,
• unsafe living conditions,

• preventable hospitalisation,
• inability to access medical care,
• crisis escalation,
• or permanent loss of functioning following repeated post-exertional crashes. Stable support is not simply about comfort or convenience. In many cases, it is what prevents further deterioration, institutionalisation, crisis-driven spending, and long-term system collapse.

Final Statement

I understand that governments face enormous pressure balancing economic realities, workforce shortages, rising service demand, and long-term system sustainability.

I do not believe most people involved in these reforms intend harm.

However, I am deeply concerned that systems designed around averages, efficiency targets, rapid standardisation, and administrative simplification may unintentionally overlook the realities faced by those living with severe, fluctuating, complex, neurological, cognitive, communication, psychosocial, or poorly understood disabilities.

Many disabled people already spend enormous physical, cognitive, and emotional energy simply surviving day to day.

Outward calmness, humour, politeness, determination, or resilience should not be mistaken for lack of suffering or lack of need.

I respectfully ask that decision-makers pause long enough to hear the voices of participants who are often too exhausted, cognitively impaired, isolated, or unwell to advocate consistently for themselves.

Historically, periods of financial pressure often place the greatest burden on those who are already most vulnerable. I respectfully ask that these reforms do not unintentionally do the same.

I believe reform should focus not only on financial sustainability, but also on preserving:

• humanity,
• safety,
• trust,
• workforce stability,
• safeguarding,
• continuity of care,
• and practical long-term support systems for the people the NDIS was originally designed to protect.

Attachment B

Supplementary Statement – Current

Functional and Support Crisis

My condition is not limited to “fatigue” or concentration difficulties.

I live with severe multi-system disability involving profound neurological, cognitive, autonomic, musculoskeletal, immune, sensory, continence, and functional impairment.

In addition to severe post-exertional malaise (PEM), cognitive dysfunction, and communication impairment, I experience:

• severe widespread pain,
• constant muscle cramps and spasms,
• burning nerve pain,
• crushing flu-like symptoms,
• recurrent infections,
• intermittent paralysis,
• orthostatic intolerance,
• severe weakness,
• dizziness,
• tremors,
• severe sleep disturbance,
• bladder incontinence,
• thyroid dysfunction,
• liver dysfunction,
• severe swelling throughout my body,
• worsening mobility collapse,
• rashes,
• sensory intolerance,
• severe gastrointestinal dysfunction,
• and profound functional instability. My body often feels as though it is physically collapsing under its own weight.

My hips, knees, back, and muscles frequently feel unable to support me properly. I can barely walk short distances within my own home. I often cannot stand safely long enough to prepare food, obtain water, clean myself properly, or complete basic daily tasks.

I experience severe pain from prolonged immobility and pressure. I currently believe I may have a significant pressure injury due to inadequate equipment, inability to reposition safely, lack of sufficient care, and years of delayed support provision.

My severe ME/CFS also involves profound autonomic and neurological dysfunction. At times my body partially “freezes” or temporarily loses muscular control. I experience episodes of extreme weakness, collapse, confusion, sensory overload, cognitive shutdown, and difficulty processing or responding to my environment appropriately.

I often struggle to regulate body temperature and can become severely unwell from heat exposure. I currently do not have adequate air conditioning in my room despite severe heat intolerance and documented medical need.

I also experience severe food intolerance, chemical sensitivity, and difficulty safely accessing meals.

Due to inadequate support and lack of properly trained workers:

• I frequently go many hours without food or water,
• fresh food often rots because nobody assists me to prepare or eat it,
• I cannot safely manage shopping or meal preparation consistently,
• and support workers sometimes accidentally expose me to foods or substances that trigger severe reactions or worsen my condition.

I have repeatedly experienced situations where workers lacked sufficient training regarding:

• medication management,
• food safety,
• allergy awareness,
• infection control,
• continence care,
• emergency response,
• mobility safety,
• dysphagia risk,
• and basic disability support procedures. I have previously experienced medication overdoses or medication-related harm from inadequately trained workers. Because of these risks, I have sometimes had to reduce or avoid important medications out of fear of further harm occurring in unsupported situations.

My dental health has deteriorated severely because I often cannot physically manage proper dental care independently and do not receive sufficient assistance from support workers.

I am also unable to consistently access routine medical care.

I am years overdue for important medical procedures, including surgery relating to a brain tumour, and I have experienced prolonged inability to access appropriate follow-up care after

cancer treatment due to severe disability, lack of safe support systems, transport barriers, cognitive overload, and inadequate coordination of care.

I currently have no meaningful emergency evacuation plan despite living in a high bushfire-risk area.

During recent fire-related emergencies, support workers were unable to appropriately assist with emergency preparation or evacuation planning. One worker froze during an emergency situation involving smoke and the need to contact and assist emergency services.

I still do not have:

• appropriate evacuation planning,
• a safe evacuation system,
• reliable emergency support,
• or an appropriate wheelchair to safely leave my home during emergencies. I cannot remember the last time I was able to simply leave my home for quality of life purposes such as sitting by the water, having a coffee, or participating in ordinary community life. I have been effectively trapped within my home for many years due to severe disability, prolonged under-support, and worsening deterioration.

I also experience profound isolation.

I rarely see my mother despite her own severe decline because coordinating safe transport, support workers, timing, energy management, continence care, mobility needs, and post exertional consequences has become overwhelmingly difficult.

The emotional and psychological impact of living in this level of prolonged unsupported deterioration is devastating.

What concerns me most is that many of these risks are not inevitable consequences of my illness alone.

They are being significantly worsened by:

• chronic under-support,
• unsafe support systems,
• inadequate workforce training,
• lack of continuity of care,
• repeated administrative burden,
• inability to safely report concerns,
• prolonged delays in equipment and services,
• and the increasing collapse of practical safeguarding structures around severely disabled participants.

I am deeply concerned that proposed reforms which further reduce support stability, continuity of care, coordination, safeguarding, workforce sustainability, or participant oversight may unintentionally worsen these risks for many highly vulnerable participants.

For people already living in severe isolation, profound illness, and cognitive overload, further fragmentation of support systems does not create safety or efficiency.

It increases invisibility, deterioration, crisis escalation, and risk.

I respectfully ask that decision-makers understand that many participants living with severe ME/CFS and similar complex disabilities are already surviving in conditions that are far more medically fragile, unsafe, and unsupported than is publicly understood.

This submission is not theoretical for me.

It reflects my current lived reality.