CFS/ME International Conference 2018
National Centre for Neuroimmunology and Emerging Diseases Crowne Plaza, Surfers Paradise, Qld
26-27 November 2018
Abstract Title: ME/CFS: NDIS and the Disability Hurdle
Authors: Geoffrey Hallmann
Background: B.Bus.(Hons), LLB (Hons). DipLegPrac, DipFinPlan; Chair of ME/CFS (Australia), PhD Candidate (Southern Cross University); Masters of Public Health Student (Griffith University)
Question: What is the position of the National Disability Insurance Scheme (‘NDIS’) with respect to claimants MyalgicEncephalomyelitis/Chronic Fatigue Syndrome (‘ME/CFS’)?
Methods: A literature review was conducted with respect to the background and purposes of the NDIS, with a specific emphasis upon ME/CFS. Direct feedback from the National Disability Insurance Agency (‘NDIA’) with respect to its policy and the foundation for it was obtained. Publicly available grey literature was accessed to identify current issues affecting NDIS claimants with ME/CFS.
Results: The NDIA is currently assessing claims on the basis that ME/CFS is not a permanent condition. The primary reason for the NDIA’s position is a misinterpretation of piece of 2006 research known colloquially as the Dubbo study and reliance upon long outdated guidelines.
Conclusions: The NDIA is does not presently have an established policy for claimants with ME/CFS, and the current view of permanency is flawed, hence people with ME/CFS are being turned away from the scheme.
Established by the National Disability Insurance Scheme Act 2013, the NDIS was formally rolled out on a national basis on 1 July 2016. The NDIS has not been without controversy, A recent report by Flinders University identified that NDIS recipients were received around half of the assistance that they had received prior to the introduction of the scheme (Mavromaras, et al., 2018). The scheme currently operates on a staffing cap, hence is heavily understaffed (Productivity Commission, 2017).
The NDIS spends approximately $ 10 million a year defending matters involving claimants contesting the decisions of the NDIA. Approximately 40% of appeals yield an improved outcome (Productivity Commission, 2017). A review of the AAT caselaw reveals no cases have been decided with respect to ME/CFS presently. There are a number of cases pending (ME/CFS Legal Resources, 2017).
The current anecdotal evidence identifies that ME/CFS applicants are not succeeding in their claims (Reilly & Buchanan, 2018; Emerge, 2018; Hutchinson, 2018; Ludlam, 2018). ME/CFS is a debilitating condition. For the majority, it is permanent (ME/CFS Legal Resources, 2017).
The NDIA deny the condition is permanent and are relying upon the 2006 Dubbo Infection Outcomes study (Hickie, et al., 2006) to assert that “many individuals recover without intervention over weeks or months, but approximately 10% will meet the criteria of ME/chronic fatigue syndrome at six months”. The NDIA claim that “[o]f these, a small subset may go on to suffer from both severely disabling and prolonged (greater than 5 years) ME/chronic fatigue syndrome” (Faulkner, 2018). The NDIA rely upon the 2002 Australian CFS guidelines (Loblay, et al., 2002) and the UK’s NICE guidelines (Turnbull, et al., 2007). Cognitive Behavioural Therapy (CBT) and Graded Exercise therapy (GET) are considered the evidence based management of the condition – despite significant evidence to the contrary.
Both guidelines are under review, with a particular focus upon the appropriateness of CBT and GET, both of which are of questionable value (Vink & Vink-Niese, 2018; Various Authors, 2017).
ME/CFS is not currently a “List B” condition, hence not presumed to be a disability. The current stance is therefore making it near impossible for people with ME/CFS to succeed. The NDIS require more contemporary insight into the condition to assist them to a more realistic view of ME/CFS claimants.
Emerge. (2018, October). National Disability Insurance Scheme (NDIS). Retrieved October 12, 2018, from Emerge: emerge.org.au/support-services/financial-services/ndis
Faulkner, C. (2018, August 17). Personal Communication from NDIA.
Hickie, I., Davenport, T., Wakefield, D., Vollmer-Conna, U., Cameron, B., Vernon, S. D., . . . Lloyd, A. (2006). Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. British Medical Journal, 333(7568), 575. doi:http://doi.org/10.1136/bmj.38933.585764.AE
Hutchinson, S. (2018, April 10). OPINION: NDIS must recognise chronic fatigue syndrome or suicide will follow. Retrieved October 12, 2018, from The Feed: https://www.sbs.com.au/news/the-feed/opinion-ndis-must-recognise-chronic-fatigue-syndrome-or-suicide-will-follow
Loblay, R., Stewart, G., Bertouch, J., Cistulli, P., Darvenzia, P., Ellis, C., . . . Toulkidis, V. (2002). Chronic Fatigue Syndrome - Clinical Practice Guidelines. Medical Journal of Australia, 176(6 May), S17-S46.
Ludlam, S. (2018, May 12). To the #MillionsMissing With ME/CFS Something Remarkable is Happening. Retrieved October 12, 2018, from The Guardian: https://www.theguardian.com/commentisfree/2018/may/12/to-the-millionsmissing-with-mecfs-something-remarkable-is-happening
Mavromaras, K., Moskos, M., Isherwood, L., Goode, A., Walton, H., Smith, L., . . . Flavel, J. (2018). Evaluation of the NDIS. Finliders University, National Institute of Labour Studies. Adelaide: Department of Social Services. Retrieved October 12, 2018, from https://www.dss.gov.au/disability-and-carers/programs-services/for-people-with-disability/national-disability-insurance-scheme/ndis-evaluation-consolidated-report
ME/CFS Legal Resources. (2017, November 13). Submission to the Joint Parliamentary Committee on the National Disability Insurance Scheme. Retrieved October 12, 2018, from Parliament of Australian: https://www.google.com.au/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=2ahUKEwjxjKXX-f7dAhUCIIgKHTR9Cr8QFjAAegQIAhAC&url=https%3A%2F%2Fwww.aph.gov.au%2FDocumentStore.ashx%3Fid%3D09902d19-3475-4f08-b222-62e15ed32dfe%26subId%3D561511&usg=AOvV
Morton, R. (2018, May 17). NDIS legal bill hitting $10m a year. The Australian. Retrieved October 12, 2018, from https://www.theaustralian.com.au/national-affairs/health/ndis-legal-bill-hitting-10m-a-year/news-story/c048d6028a8363597a30115d3cdb921f
Productivity Commission. (2017). National Disability Insurance Scheme (NDIS) Costs. Australian Government, Productivity Commission. Canberra: Commonwealth of Australia. Retrieved October 12, 2018, from https://www.pc.gov.au/inquiries/completed/ndis-costs/report/ndis-costs.pdf
Reilly, A., & Buchanan, R. (2018, August 24). ME/CFS National Disability Agreement Review Submissio. Retrieved October 12, 2018, from Productivity Commission: https://www.pc.gov.au/__data/assets/pdf_file/0004/230953/sub023-disability-agreement.pdf
Turnbull, N., Shaw, E. J., Dundson, S., Costin, N., Britton, G., Kuntze, S., & Norman, R. (2007). Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy): Diagnosis and Management of Chronic Fatigue Syndrome/Myagic Encephalomyelitis (or Encepaholpathy) in Adults and Children. London: Royal College of General Physicians.
Various Authors. (2017). Special Issue: The PACE Trial. Journal of Health Psychology, 22(9), 1103-1216. Retrieved from http://journals.sagepub.com/toc/hpqa/22/9
Vink, M., & Vink-Niese, A. (2018). Graded Exercise Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is Not Effective and Unsafe. Re-Analysis of a Cochrane Review. Health Psychology Open, July-December, 1-12. doi:https://doi.org/10.1177/2055102918805187