ME/CFS: NDIS and the disability hurdle (2018) Hallmann (Australia)

CFS/ME International Conference 2018 National Centre for Neuroimmunology and Emerging Diseases Qld 26-27 November 2018

Abstract Title: ME/CFS: NDIS and the Disability Hurdle

Authors: Geoffrey Hallmann

Abstract:

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position is a misinterpretation of piece of 2006 research known colloquially as the Dubbo study and reliance upon long outdated guidelines.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.

Abstract Submission:
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.

(PDF) ME/CFS: NDIS and the disability hurdle. Available from: https://www.researchgate.net/publication/329444535_MECFS_NDIS_and_the_disability_hurdle [accessed Dec 29 2018].
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Wow if that misunderstanding of the dubbo studies is true, that would be some really scary stupidity.

The dubbo study showed that six months after having certain types of infections (EBV, Q fever etc.) around 10% met diagnostic criteria for CFS. NDIS apparently interpreted this falsely as only 10% of CFS patients still having CFS after six months. They thought this proved CFS is not a chronic condition worthy of longterm disability payments...
 
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the NDIS are very keen to avoid setting a precedent for future claims.



from a local newspaper, discussing *ALL* NDIS claims (ie not just pwME):

"It gets just before the court date, and they settle outside the court in order to avoid precedents,” she said.

“At the last minute, the families are given what they want. This year, if we want to get a similar level of support, we would have to go right through that again because there hasn’t been precedents made. They are absolutely dragging it out,” Ms Noon said. “We’re taking some very overstretched, over-stressed families and putting them through a really exhausting process.”

The NDIA takes a conciliatory approach to all AAT appeals. Approximately 90 per cent of all AAT matters are resolved without a substantive hearing; either by consent agreement, withdrawal, or a lack of jurisdiction for the AAT to hear the matter. To date, 618 AAT matters have been resolved before hearing and 27 have proceeded to the tribunal.


https://www.theherald.com.au/story/...-this-policy-push-to-keep-plans-to-a-minimum/

[edited to emphasise this article is about *ALL* NDIS claims, not just pwME]
 
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Michiel Tack said:
Wow if that misunderstanding of the dubbo studies is true, that would be some really scary stupidity.

The dubbo study showed that six months after having certain types of infections (EBV, Q fever etc.) around 10% met diagnostic criteria for CFS. NDIS apparently interpreted this falsely as only 10% of CFS patients still having CFS after six months. They thought this proved CFS is not a chronic condition worthy of longterm disability payments...
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I doubt the actual reason matters, the same outcome would have happened no matter what any research showed. It's too generous to pin it down to one mistake or another. At its root is denial, it doesn't matter how it is justified, they just have a strong opinion on the subject, reject reality and substitute their own. If the same people did the same process today it would lead to the exact same outcome.

Insisting that it is not the disease that has been described for decades, albeit not very accurately, is primarily ideological. No one who pursues this reasoned their way into this opinion and reason won't sway them out of their belief. It's as scientifically sound as assuming the episodic outbreaks can be explained as mass hysteria because it primarily affected women. Facts just don't matter when belief overrules reason.
 
Sean said:
It is not stupidity. It is deliberate. The current government have torn our health and welfare systems to pieces.

Like rvallee said, if it wasn't this excuse it would have been another one.
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Totally agree with both of your assessments of it not being a basic error or misunderstanding.

It does feel like someone needs to force their hand for things to change, and unfortunately probably more than annual protests and slow-burn campaigns. This government really is the pits, and I doubt that the other major party would be any better. It just seems to be a never ending race to the bottom (for healthcare, and everything else) in Australian politics.
 
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