Submission 3049 — Name Withheld — NDIS Future Generations Bill | External submission

To:

Minister for Disability, the NDIS, Health and Aged Care, Hon Mark Butler MP

Minister for the NDIS, Senator the Hon Jenny McAllister

CC: Renee Coffey MP for Griffith

Re: Submission regarding the National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026

7 July 2026

Dear Minister for Health and Aged Care Hon Mark Butler MP and Minister for the NDIS,

Senator the Hon Jenny McAllister,

I urge the Australian government to reverse the NDIS budget cuts and withdraw the NDIS Bill. I am one of the over 250,000 people in Australia living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and the Founder of the Brisbane ME/CFS Support group and a national advocate for ME/CFS. Having access to the NDIS, particularly Foundational Supports, would mean that I would be able to afford:

Medical transport. I live alone and do not have family or friends who are available and/or able to assist.
Support workers to assist with providing me with personal care, house cleaning, shopping for groceries and medications.
Someone to help coordinate my complex array of medical treatments, doctors, and allied health, particularly physiotherapy.

Already, approximately half of my meagre Disability Support Pension is spent on healthcare costs alone. Many of my healthcare needs I must forgo, including much needed physiotherapy and medications. If I had access to the NDIS, I am sure that my health would improve and thereby enable me to have the capacity to sustain paid employment.

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NDIS definition of ‘permanence’

I am especially concerned that the NDIA’s definition of ‘permanence’ in relation to disability would require participants and applicants to try all available treatments before being considered eligible for the NDIS. Moreover, treatments may be considered ‘available’ even if they are unaffordable or unavailable in my area.

Sadly, there is no cure for ME/CFS – only symptom management. And currently, since many doctors receive little to no effective up-to-date training about ME/CFS, many clinicians refer people with ME/CFS to undergo GET/CBT, which has been widely denounced as harmful by over 100 prominent, well-respected clinicians worldwide, including the directors of Australia’s National Centre for Neuroimmunology and Emerging Diseases. Furthermore, due to the lack of up-to-date clinical guidelines regarding ME/CFS and the highly complex nature of the disease which affects all bodily systems, many people living with ME/CFS must undergo many costly visits to GPs and specialists in order to provide the requisite evidence to access the NDIS. The lack of solid clinical guidelines, affordable and available treatments, and knowledgeable clinicians means that the majority of people with ME/CFS would continue to miss out on the NDIS.

False economy

I am aware that the Australian government claims to justify the NDIS cuts to achieve ‘sustainability.’ However, the NDIS cuts, by denying people with ME/CFS access to adequate healthcare and supports, are likely to result in the worsening of their health and thereby worsening the nation’s healthcare budget. Already, according to the National Centre for Neuroimmunology and Emerging Diseases, as of pre-2019, ME/CFS costs the national economy over $14.5 billion each year 1. Relatedly, the resultant poverty and distress is likely to also cause increases in domestic and family violence as well as crime. Also, the lack of NDIS supports would result in many dying at far younger ages of heart disease, cancer, or suicide, as reported by USA research i. Sadly, within the Brisbane ME/CFS Support group alone, I know of several members who have or have already died of cancer before turning 55 years old.

1 Close S, Marshall-Gradisnik S, Byrnes J, Smith P, Nghiem S and Staines D (2020) The Economic Impacts

of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in an Australian Cohort. Front. Public Health

8:420. doi: 10.3389/fpubh.2020.00420

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Thank-you for your attention as I request that you stop the NDIS cuts and withdraw the NDIS Bill.

Yours,

Average age of death, by cause: ME/CFS patients vs. US population

90 77.7

80            73.5                                                                             71.1

66.3 70

58.8       death 60       55.9

of                                 47.4       50

age                            41.3       40

30 Average 20 10 0

All-Causes          Suicide        Cardiovascular       Cancer

Problems

Cause of death

Patients with ME and CFS US Population

2 McManimen, S. L., Devendorf, A. R., Brown, A. A., Moore, B. C., Moore, J. H., & Jason, L. A. (2016). Mortality in patients with myalgic encephalomyelitis and chronic fatigue syndrome. Fatigue: Biomedicine, Health & Behavior, 4(4), 195-207. doi:10.1080/21641846.2016.1236588

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