NDIA Accountability Project

Severe disability due to food allergies and ME/CFS

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Submission 1589

Submission re NDIS bill

27th May 2026

Minister’s right to cut NDIS costs

I am a severely disabled NDIS participant. I am housebound and need to recline for 95% of my waking hours. I can no longer cook, clean, garden or drive. I am dependent on NDIS funded support workers for household tasks. As a result of one of the conditions in my NDIS plan, I have many food allergies and sensitivities. All of my meals must be made from scratch by support workers, because ready made meals contain food chemicals that I react to. The prospect of the Minister being able to make cuts to NDIS supports across the board is terrifying. I don’t know how I would access hot food or maintain my house and yard. The minister has tabled a 50% cut to community and social participation. My support company uses this budget to take me to essential appointments. Am I now supposed to only attend half of those appointments? What should I skip? - Visits to Canberra Hospital to monitor my deteriorating vision, or breast scans? Other people use this funding to gain access to the community, preventing the isolation that so often comes with disability. How will this cut not cause hardship? There is no way that the Minister can know the actual effects of cost cutting. Only the individual participants experience this. To date, there has been no feedback mechanism to record the trauma and hardship caused by poor decisions by NDIA staff, and this bill does not add one. Existing supports have already been defined as reasonable and necessary. Supports should only be reduced after consultation with the disability group affected and after quality of life impacts have been assessed for each individual. The government may be concerned about the optics of high NDIS costs to the electorate. However, the twenty percent of Australians with a disability are part of the electorate, and so are their friends and family members. Who will vote for a party who is unwilling to look after some of the most vulnerable people in the community?

Plans suspended after “reasonable attempts” to make contact

Under the new bill, plans can be suspended after “reasonable attempts” to make contact. This statement needs to define “reasonable attempts” to avoid denying disabled people essential support. My daughter is autism level 3. She never answers her phone and is unlikely to agree to talk to NDIA staff. There is a note on her file to only contact me, her nominee. However, NDIA staff routinely phone my daughter instead of myself. Given that NDIA staff fail to take note of the request to contact me, instead of

Submission 1589

my daughter, it is likely that they would suspend her plan after a few failed attempts. In other words, under this clause, my daughter’s plan could be suspended due to the incompetence of NDIA staff even though we are contactable.

Strengthening the link between impairment and need for support might seem like a simple solution to able-bodied people or people with clear cut disabilities but it is a disaster for people with poorly understood complex disease. Under the new requirements, participants would need to justify the supports they need for every single symptom of complicated, chronic diseases. This will disproportionately discriminate against people with invisible disabilities and under-researched diseases that predominantly affect women, such as autoimmune disease and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The gender discrimination of the medical system and research will carry over into the NDIA, strengthening the gender inequity that already exists.

I and 500,000 other Australians have ME/CFS. (This includes the 51% of people with long COVID who qualify for an ME/CFS diagnosis.) ME/CFS disproportionately affects women. ME/CFS is a systemic disease that affects cognition, muscles and the immune, cardiovascular, neurological and gastrointestinal systems, as well as the autonomic functions that keep us alive.1,2 The disease is permanent in all but 5% of people.3 One quarter of us are housebound or bed bound 1 - 125,000 Australians. Around 12% of people with ME/CFS are in a state that is considered to be worse than death.4 Unlike the US and the UK, Australia does not recognize ME/CFS.5 We are routinely denied disability supports and medical care. Consequently, fewer than 200 people have ME/CFS listed as their primary disability on their plan, despite being entirely dependent on care. The research consensus provides overwhelming evidence that ME/CFS is a permanent and severe systemic disease.3 Yet the NDIA refuses to acknowledge the research.

Some people with ME/CFS are able to access ME/CFS supports because they they have to co-conditions that are recognised by the NDIS. Personally, I have access to NDIS supports because I am autistic. But it is ME/CFS that has left me severely disabled. I have ME/CFS listed as a secondary disability on my plan but have already been denied legitimate supports because the NDIA does not understand ME/CFS. The tightening of the link between supports and impairment will only worsen this problem, because funding will become even more dependent on the limited understanding of NDIA staff. Hence the tightening of the link between supports and impairment is likely to deny support to some of the sickest people in the country

The World Health Organisation classifies ME/CFS as a neurological disease that affects all body systems.6 However, NDIA staff appear to believe that ME/CFS only causes fatigue. Consequently, they refuse to fund supports that do not appear to be fatigue-

Submission 1589

falsely believing ME/CFS to be psychological. This causes untold hardship, as severely disabled people are denied support.

In my case, ME/CFS gives me severe orthostatic intolerance. In other words, being upright makes me very ill, exacerbating all symptoms. I become cognitively and physically incapacitated. So I need a recliner and a laptop stand that tips my laptop up vertically so that I can type while lying down. Even then, I can only work on the computer for a couple of hours on good days. I need expensive medical grade compression wear, replaced every 4 months. I need a CPAP machine to keep me breathing at night. I need cleaners and gardeners. I need support workers to cook and take me to essential face to face appointments. I’ve sometimes needed a wheelie walker.

I’m also hypermobile, with a connective tissue disorder. This is common in ME/CFS. So, sometimes I need braces and supports. I need an ME/CFS-aware physiotherapist to help me heal the injuries that arise in connective tissue disorders and stave off deconditioning, without exacerbating my ME/CFS. I have mast cell activation syndrome, as many people with ME/CFS and/or connective tissue disorders do. This gives me widespread food intolerances, so all my food must be prepared from scratch. Under the new regulations, I would need to fight for recognition of each co-condition and advocate for each and every support. This might be possible if the NDIA heeded research studies, but it does not. All of my essential supports are in danger because strengthening the link between support and impairment relies on the NDIA staff’s understanding of the disability in question. In the case of ME/CFS, that understanding is non-existent.

Without a doubt, the tightening of the link between diagnosis and support will result in the denial of supports even when the relevant disease is listed on the plan. For example, NDIA staff will assume that connective tissue disorders like Ehlers Danlos Syndrome (EDS) only affect the muscles and joints. They will deny other supports, even though they are caused by EDS. Staff will fail to recognise that EDS can also compromise membranes such as the gut and blood brain barrier. They will fail to recognise that compromised membranes trigger immune cells called mast cells that predominate in connective tissue, causing widespread sensitivities to foods, medications and chemicals, as well as substances that touch the skin. They will then deny funding for dietitians and support workers to prepare low reactor food from scratch. NDIA staff will also fail to recognise the cognitive deficits and psychological conditions that result from leaky blood vessels and blood brain barriers. Consequently, they will deny access to support coordination and psychology. (Medicare provides some psychology funding, but it only covers about half of the actual cost of a clinical psychologist.) It is already clear that the NDIA does not read research. Staff will not accept supports that they do not understand. And, unfortunately, the understanding of NDIA staff is very limited. The tightening of

Submission 1589

support requirements will cause extreme hardship for some of the most severely disabled participants.

The proposed bill states that supports should be granted on the basis of “research and evidence in relation to the support that is published, peer reviewed and generalisable”. ME/CFS research has been underfunded for decades.7 The disease receives one fiftieth of the research funding that it would receive if funding were allocated by disease burden.7 Consequently, there will be little research evidence support to justify the needs of people with ME/CFS.

It should not be our job to educate NDIA staff about our disease and justify legitimate supports down to the last detail. Most people with ME/CFS struggle with poor cognition. For months at a time, I have struggled to make a simple phone call or write a one-line reply to an email. How will I navigate the increased bureaucracy to justify my supports?

The problem of complex chronic disease is not unique to ME/CFS. It also affects people with autoimmune disease, Ehlers Danlos Syndrome and many other conditions. Our bodies do not conform to a checklist of approved symptoms. Furthermore, complex symptoms compound. It may be possible to cope with any single symptom. But the compounded symptoms may be incapacitating.

I already spend over $20,000 per year out of pocket on medical appointments, medications and supplements because Australia’s medical system is so far behind best practice for ME/CFS. My main source of income is a pension. I cannot afford to fill the gap if my NDIS supports are reduced. How will I cope?

People with ME/CFS are used to being gaslit and blamed for having a severe disease. The few people with ME/CFS who have managed to access NDIS supports have been traumatized, myself included. Bureaucrats with no understanding of disability, let alone ME/CFS, determine what support we can access. They make decisions over our lives, and those decisions determine what we can and cannot do, as well as our quality of life. We already struggle to survive. Please, don’t make changes to the NDIS that will make our lives even harder.

References

  1. Carruthers, B. M., van de Sande, M. I., De Meirleir, K. L., Klimas, N. G., Broderick, G., Mitchell, T., Staines, D., Powles, A. C., Speight, N., Vallings, R., Bateman, L., Baumgarten-Austrheim, B., Bell, D. S., Carlo-Stella, N., Chia, J., Darragh, A., Jo, D., Lewis, D., Light, A. R., Marshall-Gradisnik, S., … Stevens, S. (2011). Myalgic encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine, 270(4), 327–338. https://doi.org/10.1111/j.1365-2796.2011.02428.x

Submission 1589

  1. National Institute for Health and Care Excellence (2021). Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: Diagnosis and management. Royal College of Physicians Guidelines, downloaded from https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#assessme nt-and-care-and-support-planning-by-an-mecfs-specialist-team, accessed 22 October, 2022.

  2. Cairns, R., & Hotopf, M. (2005). A systematic review describing the prognosis of chronic fatigue syndrome. Occupational medicine (Oxford, England), 55(1), 20–31. https://doi.org/10.1093/occmed/kqi013

  3. Hvidberg, M. F., Brinth, L. S., Olesen, A. V., Petersen, K. D., Ehlers, L. (2015). The health-related quality of life for patients with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). PLoS ONE, 10(7): e0132421. doi:10.1371/journal.pone.0132421

  4. Steven, I. D., McGrath, B., Qureshi, F., Wong, C., Chern, I., & Pearn-Rowe, B. (2000). General practitioners’ beliefs, attitudes and reported actions towards chronic fatigue syndrome. Australian family physician, 29(1), 80–85.

  5. World Health Organization. (2019). ICD-11: International classification of diseases (11th revision), chapter 8, 8E43.Z. Retrieved from https://icd.who.int/

  6. Mirin, A. A., Dimmock, M. E., & Jason, L. A. Research update: The relation between ME/CFS disease burden and research funding in the USA, Work, 66, 277–282. doi: 10.3233/WOR-203173