Sth Australian Gov discrimination against ME/CFS and POTS patients

[taniaaust1]

Im annoyed.. this is the latest letter (below) Ive got over my application for the gov heating and cooling rebate for those who have issues with temperatures. The gov is discriminating against our illness. Ive gone actually unconcscious at times when it gets too warm.. so that could happen and what if I didnt come too again in the heat? I could end up dead. I can only handle a very small range of temp without it causing me issues and making me illner or making me completely pass out. and then I run up MASSIVE electricity bills in the cooler weather over $500 per month some months (as then I struggle to keep warm and putting jumpers on dont help me much as I seem need outside warmth source if Im crashing).

Here's the gov letter to me. Im so fed up over gov discrimination over ME/CFS.. fed up that even POTS isnt being recognised either. (note those who have got ME/CFS and POTS in some other states of Australia are able to qualify for heating and cooling rebates.... my state is known as the worst Aussie state for disability things). Im constantly battling with the gov to get my needs equally met as those with other illnessses do.

The SA ME/CFS society is run by those with this illness who are too unwell themselves to start fighting against the goverment biased towards our illness, this is one thing we need an org here to be fighting to change (maybe this could take this up on an Australian ME/CFS society level?? or do I complain to the Federal Gov over my states gov..

I dont know how to successfully fight the obvious discrimination here. Im at risk with heat and should have access to this electrical rebate concession and Im sure Im not the only ME/POTS patient to be in this situation. (maybe we need to find a lawyer and do a group discrimination case against the gov.. I cant keep fighting everything alone). Did the "independant experts" doing the review even know anything about ME and POTS? How do I fight the discrimation happening at gov state level?

 

[alex3619]

Sorry, tania.

 

[taniaaust1]

Sorry, tania.

Alex.. do you know if info on things like this can be applied for under the freedom in Info act? the info on a state gov review? and what was said about our illness by their "independent experts" and info on who those experts advising the gov on our illness were?

 

[alex3619]

I am not sure Tania, haven't investigated FOI in Australia. There must be options, but also limitations.

You might start here:

http://www.oaic.gov.au/foi-portal/

Looks legally messy though, would help if you can find someone who already knows about this stuff.

 

[taniaaust1]

Update.. I tried to get hold of the SA ME/CFS society yesterday and left a message on their answering machine and their vice president (Emma..she was nice) rang back today. They didnt know the gov had made this decision as those who have FM qualify for the rebate (I thou dont get FM anymore with my ME/CFS so cant qualify on that ground (even when I used to have FM I couldnt even get it diagnosed as all my pain issues where just put down to ME/CFS). So Im going to send a copy of the letter I got sent to them and they are going to follow up about ME/CFS and POTS being knocked back to qualify.

Fingers crossed the state gov will review their rules again and change things so our illness is accepted for the state rebate.

 

[Sea]

http://blogs.dfc.sa.gov.au/cfs-file...00_Medical-heating-and-cooling-concession.pdf

Usually whether your application is accepted or rejected has more to do with the way your doctor fills out the application and whether they provide the necessary documentation properly or not. I would focus on the POTS diagnosis using the word DYSAUTONOMIA (which it is) and you would qualify under the autonomic dysregulation criteria. You would need your ttt results as proof.

 

[Sea]

Also if you look at the criteria:

http://blogs.dfc.sa.gov.au/cfs-file...oling-Concession_2D00_Clinical-Guidelines.pdf

It's not as important what the condition is as how it affects you. They give an example of a person with MS who wouldn't qualify because her health is such that she doesn't meet the criteria.

The document also stresses that it's not about whether a sick person is more uncomfortable in extremes of temperature but whether their condition is exacerbated or a relapse is caused. You will certainly qualify as long as you can get your dr to write what is needed and provide the proof

All the best with it

(Edit to add - my daughter has qualified for this rebate in nsw with her diagnosis of Dysautonomia and ttt results)