SUBMISSION TO THE JOINT STANDING COMMITTEE ON THE NDIS
National Disability Insurance Scheme Amendment Bill 2026
Submitted by: Lionel Hodgins Date: 9th July 2026
Introduction
I am writing to you as a parent and caregiver to urge you to oppose the proposed NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 and protect vulnerable people with complex, poorly understood conditions like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
My daughter, Natalia Hodgins, is 40 years old and lives in Perth. She is one of an estimated 250,000 Australians living with ME/CFS. The onset of Natalia’s disability began in 2017 while working for the Australian Government, she was independent, accomplished, and thriving. Today, she is bedbound and requires 24/7 care from my wife who quit work to care for Natalia prior to receiving NDIS support. At 63 years old I have recently retired and we have given up our retirement plans to care for Natalia.
What particularly concerns me is that this bill appears designed to remove people with “atypical” or complex presentations - conditions that don’t fit into traditional disability categories. Cutting Natalia from the NDIS would be catastrophic for her and our family. The NDIS support, when it was finally approved for Natalia, has provided life sustaining assistance we could not manage alone.
The outcomes I am seeking from the Committee:
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Shelve this bill. Do not push through legislation that will remove 241,000 people from support without proper consideration of the harm that will result. The disability community deserves genuine consultation.
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Call for specific protections for complex, poorly understood conditions. Ensure protection for people with conditions like ME/CFS that are not well-understood by medical practitioners and NDIS assessors. We need binding criteria that prevent removal of support based on medical misunderstanding.
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Amplify the voices of families like mine. We are not statistics. We are people. We are parents who have given up retirement to care for our disabled adult child. We are exhausted, terrified, and watching the supports that keep our family intact being systematically dismantled.
Required Treatment and Establishing Permanence - Schedule 1 Part 8
Required Treatment:
Australia’s Royal Australasian College of Physicians (RACP) has not updated its clinical guidelines on ME/CFS in 20 years. These guidelines still promote graded exercise therapy and cognitive behavioural therapy as treatments, despite overwhelming evidence that these approaches harm ME/CFS patients. The United States and United Kingdom have rejected these treatments based on current research. Australia has not.
An Australian survey of over 600 ME/CFS patients found that 89% had been harmed by graded exercise therapy (LIFELONG LOCKDOWN: Lessons Learned from the Health and Wellbeing Survey of
Australians Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) 2019, Emerge). Yet
the Royal Australian College of General Practitioners continues to recommend it. This is not medical science - this is medical negligence.
The National Disability Insurance Agency continues to use these outdated RACP guidelines when assessing ME/CFS patients for support, rejecting applications from people who refuse harmful treatments. This creates a bizarre situation where people with ME/CFS cannot access disability support unless they agree to treatments that will make them worse.
I recommend where no evidence-based treatment currently exists for ME/CFS, as diagnosed using criteria including post exertion malaise (PEM - a pathological response to physical, cognitive, sensory or emotional exertion that can cause delayed, severe and sometimes permanent reductions in functional capacity), no ‘treatment exhaustion requirement’ is to apply as a precondition for access to the NDIS.
Permanence:
ME/CFS is characterised by profound functional impairment, post exertion malaise and fluctuating capacity. Post exertion malaise results in some or all ME/CFS symptoms flaring due to physical or cognitive exhaustion, with a consequent reduction in functional ability following every episode. Requiring exhaustive testing using clinical guidelines that are 20 years old, implemented by NDIA administrative staff to establish permanency is not justifiable and indefensible.
I recommend permanence evaluations be made on the best available evidence, made by knowledgeable clinicians with detailed patient history. For sufferers of severe ME/CFS the evidence is clear: people diagnosed with severe ME/CFS using appropriate criteria (including post exertion malaise - PEM) suffer continually deteriorating physical and cognitive functionality.
Functional Capacity Assessment - Single Point Assessment - Schedule 1, Part 1
The move toward standardised functional capacity assessments is extremely dangerous for sufferers of ME/CFS. People afflicted with ME/CFS suffer post-exertional malaise, meaning exertion, whether physical, cognitive or sensory, does not simply tire them, it makes them measurably sicker, often with a delay of hours or days before the full impact appears. A snapshot assessment of what they can do in a single sitting cannot capture this. What they can do once is not what they can do safely or repeatedly, and an assessment that measures capacity without accounting for the cost of using it risks recording more function than they actually have, because the consequences are not visible at the time of testing.
Reliance on automated tools, I-CAN assessment methodology, algorithmic tools or AI must not form the basis of standardised assessments, expert clinical diagnosis must be relied upon to determine the relationship between exertion, delayed deterioration, safety and support need. NDIS/NDIA staff and representatives must receive appropriate training and qualifications to make determinations with respect to ME/CFS and PEM. Any form of assessment must in itself be accessible to sufferers of severe ME/CFS who are housebound; bedbound; severely disabled; cognitively impaired; sensory sensitive; or without a carer or advocate.
I recommend NDIS assessments must assess functional capacity according to what a person can do safely, reliably and repeatedly, not merely what they can perform once during an assessment. Functional capacity assessments must assess what a person can do safely and repeatedly without triggering PEM and further deterioration or loss of function. Functional capacity must be assessed across multiple time points - days or weeks - and conditions to ensure the impact of post exertion
malaise is captured. Functional capacity assessments in and of themselves must not trigger post exertion malaise.
The Impairment-Support Link - Schedule 1, Part 3
Sufferers of severe MS/CFS experience a range of acute impairments and functional limitations; dysautonomia, orthostatic intolerance, gastrointestinal dysfunction, sensory sensitivities, chemical intolerance, chronic pain, cognitive dysfunction and sleep disturbance. These are not separate disabilities to be assessed in isolation, these impairments represent the overall presentation of ME/CFS. When assessing disabled people with ME/CFS, impairments must be considered in totality when determining functional ability.
Alarmingly this change is slated to be implemented 7 days post Royal Assent. Participants should not be having their plan reduced and recut without specialist clinical support and consultative engagement. Once a person has met the eligibility for ME/CFS, supports managing these impairments continue in their plan.
I recommend where multisystem conditions - ME/CFS - are being assessed, supports/funding should not be dismissed due to every symptom/functional impact not being explicitly listed. The complete picture must be considered with respect to disability related dysfunction as a result of the condition. In the case of severe ME/CFS this encompasses post exertion malaise, dysautonomia, orthostatic intolerance, gastrointestinal dysfunction, sensory sensitivities, chemical intolerance, chronic pain, cognitive dysfunction and sleep disturbance.
Ministerial Support Determinations - Schedule 1, Part 4
My 40 year old daughter relies on supports funded by the NDIS for her daily living tasks. Personal care, cooking, cleaning, bathing, medication support, garden maintenance, grocery shopping, daily administration tasks because her disability prevents her from doing these basic daily tasks. My daughter’s plan is substantially built around recurring core supports for sustenance of life.
Giving the Minister the power to strip away a percentage of funds for categories of supports and automatically apply this to her plan without alteration to the text/structure of her plan will translate into stripping daily care from a disabled person with no other means to bridge the gap.
I recommend the Minister can not make cuts to supports that people rely on for daily health and living needs.
Supports Outside the NDIS - Schedule 1, Part 9
My daughter who is now bedbound by severe ME/CFS spent five to six years exhaustively seeking assistance and support from mainstream medical and ancillary health services across Australia and the world. She has dealt with specialists in Sydney, Melbourne, Perth, Brisbane, California, the UK, at the same time exhausting her personal finances while her health continued to decline. The NDIS, since she was granted access, has been the only tangible resource providing life sustaining supports to ensure safety and continuity of care.
There is nothing available to my daughter that could be met by services or supports outside the NDIS
- they simply do not exist. So what is it the Bill is expecting people with complex, chronic diseases such as ME/CFS to access outside the NDIS?
Pushing supports to untrained, unqualified family members is not sustainable or appropriate. My wife and I are now 63 years old, retired and have our own personal and health challenges. To expect that we could pick up the supports our daughter requires is unconscionable.
I recommend decision-makers, in consultation with impacted parties, be required to confirm that a specific, accessible, appropriate service is practically available to the individual before reducing NDIS supports and an overlap time period is provided for the requisite handover period.
Conclusion
In conclusion my family and I strongly support ‘Securing the NDIS for Future Generations’. However this cannot be at the expense of the people who are currently in the system and utilising the available resources honestly and for their intended purpose. Driving out the rorting, the shonky providers and fraudsters requires exceptional governance and functional systems to which people can be held accountable to - this should be the focus of reform.
Like many government implemented and run services the system lacks maturity, governance, sound systems and processes. This is not the failure of the severely disabled nor should they be the punching bag for budget cuts.
I urge the Committee to recommend the Bill not be passed. The NDIS needs to be strengthened through reform not diluted and restrictive. The chronically ill and severely disabled deserve a system that allows them to survive with supports that provide safety, daily living requirements and dignity.
Without the NDIS support my wife and I will be unable to sustain our caregiving and a 40-year-old woman with a serious, disabling illness will be left without support in a wealthy country that could help her but has chosen not to.