National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 728
NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 ME/CFS Australia submission
Submission to Senate Community Affairs Legislation Committee Inquiry NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
1 June 2026
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 728
NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 ME/CFS Australia submission
Prologue: ME/CFS is highly disabling across all domains
ME/CFS, myalgic encephalomyelitis/chronic fatigue syndrome, is a complex neuroimmune condition with Disability-Adjusted Life Year scores reflecting the severe, multi-domain impairments that affect the daily lives of people with ME/CFS: • Mild handicap 0.137 • Moderate handicap 0.449 • Severe or profound handicap 0.760 25% of people with ME/CFS have severe or profound ME/CFS, defined as mostly housebound through to fully bedbound. Significant loss of function is required for a diagnosis, even for mild ME/CFS.
Few people with ME/CFS have the functional capacity for paid employment. This is particularly so for those with moderate, severe or profoundly severe ME/CFS. Additionally, family carers for this cohort may leave paid employment or reduce paid hours to support the person with severe or profoundly severe ME/CFS. Disability-related poverty is common.
Post-exertional malaise (PEM) is the unique, identifying feature of ME/CFS. It involves a pathological loss of energy and worsening of all symptoms following minimal physical, mental or emotional effort, or other triggers. The severity of symptom exacerbation is out of proportion to the intensity and duration of the triggering effort. When people with ME/CFS push themselves to use more than their available energy reserves, a further loss in functional capacity is inevitable and cannot be reversed simply by a long rest or a good night’s sleep. PEM typically last for several days, but can last weeks, months, or even result in permanent worsening of function.
Due to the unique characteristics of post-exertional malaise, maintenance of already reduced functional capacity requires supports to decrease the energy demands of daily living and other activities.
The complexity of ME/CFS means that many of our impairments and special support needs intersect with a range of other conditions. For example,
• Energy limitation: like other Energy Limiting Chronic Illnesses, our capacity to engage may dwindle rapidly • Sensitivity to airborne chemicals: like asthma, we need clean air, including avoidance of fragrances • Sensitivity to noise, light, movement: like ASD, we need quiet, calm spaces • Inability to stay upright: like 70% of people with Long COVID and others who have POTS, we cannot remain upright for long, may not be able to sit for long, and in profoundly severe ME/CFS, may not even be able to have the head of the bed elevated • Mobility challenges: the combination of limited energy and limited ability to remain safely upright mean that wheelchairs, transport support and other mobility assistance are essential for preventing injury and avoiding deterioration in functional capacity
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 728
NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 ME/CFS Australia submission
• Communication challenges: we may experience slower processing and other barriers when seeking to communicate with others • Neurocognitive challenges: we may need supports for memory, decision-making, administrative tasks and other cognitive functions
Each impairment has not only a direct impact on support needs, but also interacts with other impairments to make support needs more complex. The overall impact of multiple impairments is not additive, but multiplicative.
Because post-exertional malaise creates intermittent worsening of both the frequency and severity of symptoms that impact on functional capacity, supports must be comprehensive, adaptable, and adequate for temporarily worsened function.
Post-exertional malaise can cause long-term or even permanent reduction in functional capacity. People with ME/CFS require timely access to reassessments when their functional capacity significantly decreases on a long-term basis.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 728
NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 ME/CFS Australia submission
ME/CFS and fully treated impairments for NDIS supports eligibility
Identifying safe and effective therapies
The entire ME/CFS research expenditure by the NHMRC in 2025 was $263,686.91. This is just one indication that there is very little large-scale research funded locally, or globally, to provide evidence for safe and effective therapies for ME/CFS and its associated impairments. Evidence reviews for clinical guidelines, such as those carried out for the current CDC and NICE guidelines for ME/CFS, clarify that most therapies are based on low or very-low level evidence.
Multi-morbidity is common in ME/CFS. Research participation often excludes people with additional chronic conditions or those who have ongoing treatment for other conditions. The ME/CFS evidence base for safety and effectiveness is therefore even more limited for those with other chronic conditions, additional to ME/CFS.
This absence of strong evidence for effective and safe therapies has not prevented people with ME/CFS being required to trial therapies before acceptance into the NDIS, sometimes against the advice of their treating clinicians and sometimes with reduced functional capacity as a result. The amendment bill will significantly add to this burden by requiring that each accepted impairment must be fully treated.
It cannot be assumed that treatment that is effective and safe for a similar impairment within another condition will be effective, safe, and accessible for the person severely disabled by ME/CFS. Further, it cannot be assumed that the low and very-low level evidence for therapies for ME/CFS and its impairments is based on research that included those with more severe disability, as research participation is rarely accessible to people with severe ME/CFS. It is not reasonable to assume that a treatment which is safe and effective for some people with ME/CFS will be safe and effective for all people with ME/CFS.
PEM and therapeutic interventions
People with ME/CFS can expect to experience post-exertional malaise following consultations, treatments, and other therapeutic interventions. PEM makes impairments worse and reduces functional capacity, which can make engagement with healthcare practitioners counterproductive and increase the risk of harm from medical interventions.
The best accepted and most widely used management approach for ME/CFS is symptom-contingent pacing to reduce the incidence and severity of PEM. NDIS supports can be central to allowing a person with ME/CFS to live safely and with some independence, in part by enabling reduction of activity to a level that reduces PEM and its impacts. For many people, the management approach of symptom-
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 728
NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 ME/CFS Australia submission
contingent pacing is only achievable after access to NDIS supports is granted. It cannot be a prerequisite for access as NDIS supports must be in place first.
For people with more severe ME/CFS, the health system can be inaccessible. Even telehealth requires in-person consultations for eligibility for Medicare subsidy, such that for some homebound and bedbound patients the entire primary healthcare system is inaccessible. There a risk that those most severely disabled will be denied NDIS supports because the person lacks the functional capacity to access medical care.
Accessing treatments
In Australia, the average time to diagnosis for people with ME/CFS is 5.9 years (EMEA Survey p35, figure 12). This is indicative of how few knowledgeable clinicians for ME/CFS there are in Australia. Waiting lists can be years long or even closed. It is not reasonable to expect people to wait additional years to access therapies with low evidence for effectiveness and safety, before applying for NDIS supports.
ME/CFS impairments are often alleviated by management practices rather than medications or other passive treatments. People may be too impaired to undertake these management approaches without first having access to assistance from NDIS supports.
Due to the minimal evidence base, therapies for ME/CFS are rarely Medicare-subsidised or on the PBS. Treating impairments of ME/CFS can be very expensive. Meanwhile, people with ME/CFS tend to live in poverty due to the severity of disability. Treatments are therefore often not financially accessible, even when an individual can access an informed clinician. It is not reasonable to bar people from the NDIS because they cannot afford treatments that Medicare and the PBS have not accepted as worthwhile.
Because of poverty, some people with ME/CFS move to locations of cheaper accommodation. This tends to take them further away from access to clinicians and therapies. It is not reasonable to expect people without geographic access to clinicians and therapies to undertake low-evidence treatments without financial and practical supports to improve accessibility.
Around 25% of people with ME/CFS are homebound due to the severity of their disability. Primary health care in Australia is often inaccessible to people who are homebound, as in-person consultation with a GP is required for eligibility for Medicare-subsidised telehealth. To bar people from the NDIS because they are too impaired to access primary health care and thus treatments is patently inequitable.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 728
NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 ME/CFS Australia submission
Providing evidence of past treatments
When access to health care has been intermittent or only occasional, it is common to lose engagement with treating clinicians. Clinicians are not always willing to provide reports for current patients, let alone someone they only met a few times or have not seen recently. Also, clinicians and/or their records may no longer be available. Those patients who are vulnerable in various ways that reduce their continuity of involvement with health care, or are excluded from health care by severe disability or poverty, have their inequity compounded when they are unable to provide evidence of past treatments to the NDIS.
Power of the Minister to cut categories of services / cuts to community participation
Evidence makes it clear that few clinicians understand the lived experience of ME/CFS. How then is the Minister to understand the unintended impact of NDIS-wide decisions on people with ME/CFS? Extensive consultation is essential before major changes are made, consultation that includes the full diversity of impairments and personal circumstances, including intersectional vulnerability.
For example, discussion about proposed cuts to community participation have been framed around leisure pursuits. While this is a valid and important form of community access and inclusion, people with ME/CFS often use this budget within their plan for other purposes. This might include medical appointments where telehealth is unavailable; maintaining in-person contact with family, close friends, and peers with ME/CFS; or in-person shopping, banking and other errands that are everyday activities for people without severe disability. Block-funded, disability-specific community activities cannot substitute for access to people, services, events, and places chosen by the individual to meet their unique needs.
The Disability Royal Commission identified isolation as increasing the risk of violence, abuse, neglect and exploitation of people with disability. The Minister has proposed to cut funding that has played an important role in reducing isolation and thus reducing those risks. Consultation with those affected by the decision would have identified this unintended consequence.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 728
NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 ME/CFS Australia submission
Suspending plans when the participant cannot be reached
For people with ME/CFS, this proposal is alarming. The inability to communicate tends to occur when people are at their most impaired. This is not the time to cut access to supports.
An additional concern is the common experience of attempted contact by the NDIS in a form that has been expressly identified as inaccessible for that participant. People rightly fear that failed contact might occur due to the form of communication, rather than the unavailability of the participant.
There must be consultation around alternative arrangements for situations where a participant cannot be reached for a significant period of time. Suspending the plan is not a safe solution.
Suspending the plan is also not a cost-saving solution. As the individual, who is already in circumstances where they have failed to communicate, deteriorates in health, wellbeing and safety, short-term costs may accrue to other services, such as hospitals, and long-term costs may accrue to the NDIS due to increased support needs.
Assessing functional capacity without reference to environment or personal circumstances
It is difficult to understand how functional capacity could be assessed for NDIS supports, independently of the world in which the individual functions.
In particular, each impairment is not experienced independently of other impairments. Not considering the interaction of impairments is problematic, as it is proposed that more moderate impairments will not be supported at all by the NDIS. An impairment that does not meet the NDIS bar for funded supports might make a funded impairment more disabling. Conversely, a funded impairment may have a significant effect on the impact of an unfunded, more ‘moderate’ impairment, leading to severe functional incapacity associated with that ‘moderate’ impairment. For people with ME/CFS, for example, PEM impacts both the severity of all other impairments and the ability to manage those other impairments.
The NDIS was designed to provide supports that meet the unique needs of the individual. Assessing each functional impairment as though it occurs in a vacuum is neither reasonable nor equitable.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 728
NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 ME/CFS Australia submission
Automated decision-making
Each NDIS participant is unique, as are their circumstances. People and their support needs are not the sum of selected data points. Automated decisions risk both the loss of important supports and, conversely, the cost of funding unnecessary supports.
For people with ME/CFS, the risks associated with automated decision-making are increased by the often-overlooked impact of key disabling factors such as PEM and autonomic dysfunction, which interact with other impairments to affect all aspects of functioning. It is unlikely that a one-size-fits-all algorithm will accommodate these factors.
Access to appeal processes
When people have poorly understood conditions like ME/CFS, it is essential that the person has access to an appeal system that will have the time and power to take a closer look into the appealed decision.
Accessing unscheduled reassessments
“Unanticipated” reassessments is a problematic requirement: a big change may be forecast and still lead to significant and urgent changes in support needs.
Who determines that a change needing reassessment is a “significant” change is also problematic. When the participant considers that their support needs have changed, that alone should be enough to drive reassessment. No one beside the participant and their family or carers can understand the impact of a change that might look insignificant to an outsider. The change might be causing increased risk of harm, unmet basic needs, and more, for the participant. The difference between what an independent person might consider significant change and what is significant for the participant is especially likely to be considerable when the participant has disabling conditions and impairments that are frequently misunderstood, which is the case for ME/CFS.
It is important to remember the many stories of violence, abuse, neglect and exploitation that emerged from the Disability Royal Commission. The NDIS must ensure that participants are protected when changes place them at greater risk, as identified by the participant or those who care for them, and not dismissed as “insignificant” by someone who cannot truly understand the lived experience.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 728
NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 ME/CFS Australia submission
All-or-nothing assessments for informing plans
People make errors. This will be even more the case for assessors when the participant has lived experience which is not understood and where shared vocabulary for functional impairments is limited. When editing is not an option and the assessment must be either accepted or discarded, there is huge pressure on participants to accept an inaccurate and inappropriate assessment, especially if one or more assessments have already been discarded.
Foundational supports
People with ME/CFS who have been unable to access the NDIS look forward to accessing Foundational Supports that can improve quality of life, including safety and dignity.
It remains uncertain which supports will offered, how they will be funded, and what resources are required to make them deliverable to people across Australia. Until Foundational Supports have been trialled in diverse communities, it is premature to presume that NDIS supports can safely be cut.
Other support considerations
Evidence base for NDIS supports, including capacity-building therapies
People with severe disabilities are rarely represented in research cohorts, so the evidence base for beneficial supports and therapies can be limited. Participants require access to supports and therapies where professional expertise can compensate for the lack of research attention. Most cost-effectively, these supports and therapies will be individualised to the particular client. Budgets and restrictions based on general principles rather than individual need risk failures in safety, dignity, independence and effectiveness.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 728
NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 ME/CFS Australia submission
Consultation for sustainability of the NDIS
No one has a greater stake in sustainability of the NDIS than participants and potential participants, their families and carers. To enact this legislation without comprehensive consultation is to risk unexpected outcomes that will leave people with severe disability unsafe, their families and carers unsupported.
This also risks unintended economic burdens, such as increased costs in hospitals, prisons, welfare and other government-funded services.
People with disability need inclusive, accessible and iterative consultation to help guide the NDIS toward sustainability that incorporates the realities of lived experience and the likely impacts of changing processes and supports, including how they are determined and delivered.
Moving forward
ME/CFS Australia would welcome the opportunity for further engagement with the Senate’s Community Affairs Legislation Committee for review of the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026, based on our collective lived experience and ME/CFS research.
Please contact info@mecfs.org.au and/or Spokesperson, Penelope McMillan,
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