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

https://www.researchgate.net/profil...e7f/ME-CFS-NDIS-and-the-disability-hurdle.pdf
https://twitter.com/user/status/1079061130549460993

 

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...

 

Indeed, except that stupidity as transparent as that might turn out to be indefensible in the face of appeal.

 

This is really upsetting and disappointing. There aren't many people with ME or CFS who need NDIS services, but those who do need them, need such services badly (because they're mostly bed-bound!)

 

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]

 

I'm so glad that this info has been put together like this. Hoping to share it with people I know who are interested in better understanding the issues PwME face, and the politics behind the science and policy creation here in Australia.

Thanks so much for sharing, @Tom Kindlon !

 

SIX HUNDRED AND EIGHTEEN! That's disgraceful.

Semi-serious question: What's the equivalent of a class action suit in Australia? Can we collect enough PwME to take the government to court?

 

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.

 

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.

 

It is deliberate. The government’s “expert medical advisor” for ME/CFS is Andrew Lloyd.

 

I wonder if the new advisory committee will change this influence?