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court case.. How does one prove ME should be classed as a disability?

Discussion in 'General ME/CFS Discussion' started by taniaaust1, Jan 22, 2015.

  1. taniaaust1

    taniaaust1 Senior Member

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    I need to discuss this topic as my states disability dept Im taking to court for ME discrimination, they are only under obligation to support people who have "disabilities" and I guess due to them telling me ME/CFS isnt a disability, they will probably try to get out of the court case consequences on that ground when it starts looking too bad on them. Apparently hospitals or other support services?? (what I dont know) is suppposed to support people who have "sicknesses".

    Hospitals whenever Im discharged thou havent put any care services in place for me ME wise as they say its up to ones GP to sort out as ME is a "chronic" health condition (and the GP then has been trying to get the disability service to provide care)

    So how I do prove ME should be classifed as disability and not a "sickness"? and hence my states disability service is responsible for helping those who have ME/CFS, get support services? ("Its not a disability, its a sickness" .. was their statement made to me as an excuse for them not to be giving me any support services for ME).

    Any ideas and thoughts on this and this issue I have with state disability service? What can help me argue it should come under state disability support services and that its discrimination if they arent helping me on grounds of having ME/CFS which has left me "disabled" so hence with disabilities (I often use a wheelchair).

    Also can anyone give me any contacts in the legal field who deal with ME/CFS who may be able to give me advice on trying to prove ME/CFS should be seen as a disability.
     
    Last edited: Jan 22, 2015
  2. halcyon

    halcyon Senior Member

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    The first thing that comes to mind would be any studies using the 2 day cardiopulmonary exercise test (CPET). My (perhaps limited) understanding is that it has been used to prove disability for insurance purposes here in the states.

    I wish you luck on your case.
     
  3. daisybell

    daisybell Senior Member

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    I think that probably your best option is to point out that ME is classed as a neurological disorder under the current WHO classification. To me, that makes it a disease, rather than a chronic health condition. The distinction is so arbitrary anyway - it's just an excuse to avoid funding support....
     
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  4. alex3619

    alex3619 Senior Member

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    I don't think a court will care if ME is classed as a disease, a disorder or a disability. Disability is based upon personal functional capacity.

    With ME you can do a 2 day CPET, and a qEEG, that might show enough of a problem. However while the qEEG can be cheap, and the primary problem is getting there and back, a 2 day CPET also runs the risk of severe relapse. An alternative I have been wanting Workwell to look at is simple metabolic gas testing. I think the CPET problems may show up in a simple gas analysis on more severe patients. That would be hard objective evidence of functional capacity.

    Its very important to have a symptom diary you can show a judge. They want to know how everything effects you. Statements from careworkers, close relatives, friends and doctors might also help. Be as well armed as possible. In particular highlight how many times you have collapsed, and in what circumstances. Highlight how many important medical appointments you cannot attend. Highlight what you cannot do.

    This is a murky area. Most who do well in such cases have legal advice from specialist legal teams.

    The critical point is probably, in my view, to use your knowledge of ME to find specific disabling symptoms which you can document, or better yet can measure using tests. These exist for some issues. Tilt table test results for example. Whether or not PEM is due to a discrete disease entity like ME is not an issue if you can document and even measure PEM and its effects.

    Where you cannot measure, at least document things. A daily diary for some months, in book that wont be lost and without dates (add your own dates as you might need more than a page), with not just problems but severity mentioned. If you have to fill it in for past days you were too sick to do so, make a note of that.

    If I think of anything else I will add it later.
     
  5. daisybell

    daisybell Senior Member

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    I think perhaps I was not clear in my earlier post....
    If the situation in Australia is like that here in NZ, then the issue of how ME is classified is important. I know in this country diabetes is classified as a chronic health condition, but for instance MS would be seen as a disability. The fact that ME is classified under neurological disorders should mean that the state can't claim its a chronic health condition... Perhaps @taniaaust1 it would be good to check this out with a friendly health professional if you can?

    The classification system is senseless as it makes no allowance for actual disability....
     
  6. taniaaust1

    taniaaust1 Senior Member

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    Thanks that's good, yes they wont be able to say a neurological disorder is a "sickness' (so then go and make out it dont come under their service).
     
  7. taniaaust1

    taniaaust1 Senior Member

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    Thanks, that's part of the issue Alex, they have even refused to take a look at ANY of my test abnormalities. When I tried to give the disability service my medical file with all all the abnormal tests to try to prove Ive got a lot wrong, they go "we dont look at medical tests as we are not doctors" "we are not interested in them".

    So even if I had a 2 day CPET they would refuse to aknowledge it (and they ignore the doctors letters cause they are convinced ME/CFS is a psycholocial disorder.. a mental health "sickness" I guess). I dont even know if that test can be done in this backwards state???..

    The Royal Adelaide Hospital and the Flinders Medical Centre (the two biggest hospitals in this state, dont even have a tilt table. The RAH I was told got rid of theirs as they werent using it!! (they obviously didnt know when it should be even used). As far as I know, the only tilt table in this whole state is at the Repat. Hospital and they dont even know much about how to do these tests!! (their lack of knowledge when I went to an appointment re doing that was astounding).

    Then the other hospital out my way is testing dysautonomic disorders with only a ONE MINUTE STANDING TEST. They tried to kick me out of hospital one time after only one bag of IV saline (I always need two after a bad collapse where I cant get back up) based on that I was okay with a 1min test and threatened to have me removed from the hospital by security when I told them I was still to sick to leave.

    (On that ocassion after being forced to leave the hospital bed, I hardly made it out of the ward before I was collapse on the hospital floor again. That doctor who had threatened me with security, ended up having to give me the second bag of saline IV!!).

    SA is very backwards with all this stuff. I still cant get heating and cooling rebate here like they do where you are etc etc even thou we have it here for those who have issues with heat (and I can become unconscious in heat, Ive ended up in hospital with heat). They refuse to accept the conditions POTS and ME/CFS here.

    I dont think there is an issue proving Im disabled (no matter what the disability service says there) seeing how often I end up being ambulanced to hospital due to collapses etc. I cant shop without being pushed in a wheelchair and lots of people can back that up. I had THREE different doctors support me getting a wheelchair. The thing will be.. if the court accepts ME/CFS is a "disability".

    I collapsed today. I cant get taken out without a wheechair without usually collapsing.
    Other services are supposed to help those who have "sicknesses" I think eg hospital services... so classification becomes important when it comes to who is responsible for my care. But yeah, I really do hope the court will just base on personal functional capacity esp since ME/CFS patients here cant get other services.

    The disability service has also been on about how I should be being treated by the hospital (and hence the hospital should be providing my transport).. They actually believe the hospital should be FIXING me. (sighs, I assume they think ME/CFS is fixable by just some GET and CBT!!). So they dont see themselves as responsible as I should just get fixed. (umm I wonder how the court hearings are going to go when all that stuff comes up.. "Why isnt she getting CBT and GET?").

    My low baseline is constant, it doesnt change (only gets a little worst over time). I do not at all have days where I can do much more then the very low level. Im highly restricted in what I can do every single day and it varies from very bad to points where I cant even crawl or sit or even speak.

    eg today I walked 100m throu a small seated crowd before I collapsed (I sat and rested at about the 50m mark .. at this point two people had to hold me up either side to help me get back to a car (another disabled persons support worker jumped up to check if I was okay when I fell down, so ended up having to help my family member who'd taken me out get me back to car)... \

    and of cause Im not doing anything else today after that fall down incident except sit legs up. No dinner tonight, I need to remain laying or seated. That's typical.

    A typical week diary should probably be enough to show how severely limited I are if the fact I have wheelchair isnt enough. (as people can say anything, the fact I do use a wheelchair to go out probably shows more). My week is paced out in the same manner most weeks. I need a strict routine otherwise I other do and end up in trouble (like today.. if family member hadnt been there an ambulance would of been called. I can not go out alone).

    It was the first time that family member had taken me to an event , he didnt want to go to it alone and didnt have another family member to go with so he came and got me. (He's only once before ever taken me out and that was just to a food place to eat) so I guess seeing me collapse for the first time was quite an eye opener for him. (he took me to the tour down under with the bike racing. We werent going to get out of the car, we were going to park somewhere we could see them go by but we ended up getting out the car).
     
    Last edited: Jan 24, 2015
  8. alex3619

    alex3619 Senior Member

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    The issue here is the court is not the same as any government department. They will want to see disability. Government departments follow simple interpretation of rules. They are not the same.

    Sigh, its hard when your state does not even have a basic 1940 test like the tilt table ... it should be available at all large hospitals.
     
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  9. taniaaust1

    taniaaust1 Senior Member

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    yes you've understood the situation. Thanks for helping me explain it. Your example of a severe diabetes person with complications not coming under the disability services is a good example. They come under a different system. Where as MS does come under the state disability services. Its tricky as all another area where ME falls throu the gaps and does a disappearing act from the governments eyes (so they dont then fund for us).

    If we held governments responsible for giving us the care others with disabilities get with equal problems in life and living, maybe we wouldnt be going invisible and maybe governments would start to fund our science as it would then really start costing them more. Thing is .. governments are getting away with it. They get away with this discrimination. M

    ost of us who are severely sick, our own families end up supporting us with no help from services at all and those who do not have families able to help them, end up in terrible situations which should not occur in our countries.
     
    Last edited: Jan 24, 2015
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  10. taniaaust1

    taniaaust1 Senior Member

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    Whatever happens with it, it will make an interesting test case for others in the future who may need to do this too.

    There is at least one committee member of the SA ME/CFS society which is going to be following what happens with this. She's going to be bringing it to the committees attention to see if they can do anything to help with the states disability ME/CFS discrimination.
     
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  11. alex3619

    alex3619 Senior Member

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    If it helps other patients then in the long run this is a good thing. It just sucks to be the crash dummy.
     
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  12. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I passed tilt table test, yet my main disability (I also have fatigue and PEM) is inability to stand for longer than 10 minutes without feeling sick and distressed.

    I suggest getting a psychological function test as a backup. I know it doesn't support a diagnosis of ME, but it will be accepted as a measure of disability, particularly by psychiatrists.
     
  13. alex3619

    alex3619 Senior Member

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    To my knowledge this has never ever succeeded. MY guess is nearly every doctor and health bureaucrat knows that ICD, like DSM, is just a bureaucratic codebook. It has no scientific authority. So this is best used cautiously in my opinion.
     
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  14. taniaaust1

    taniaaust1 Senior Member

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    Its the names of the disabilities which seem to be important to the states disability service.. they seem to have some kind of list of "qualifying" diseases etc .. they dont care at all about tests and refused to even look at my tests. Its coming down to name thing and biased towards names.

    Psychriastrists in the past just didnt believe in ME/CFS was a real illness (I've seen 4 I think), refused to do tests (they just told me I didnt have depression etc. I agree I didnt have depression at the time..ME/CFS people in their eyes were expected to have depression).. and just gave me a wrong diagnoses of BPD as they didnt understand that food issues was causing my mood swings at that time and they didnt believe me at all that I was getting severe issues with ME/CFS so they blamed me for making up my symptoms (they didnt even look at my tests!) and gave me a BPD diagnoses.

    The fact I'd become suicidal due to bad treatment, they blamed on BPD. They were so terrible they actually missed diagnosing my Aspergers.. so I got that diagnoses at a later point from professionals in Autism (its an offical diagnoses meeting two autism experts being in agreeance and doing the report).

    They dont tend to try reassessing me at all and just go by previous psychriastrist report.

    The only good one Ive seen who may of been a psychriastrist or he could of been a psychologist (I cant remember), is the one doing the neuropsych testing for the Adelaide ME/CFS study on the brain. My results were shocking that the guy doing the testing felt sorry for me (the results shocked me too). I couldnt thou get a copy of those intensive tests (done over 2 days) as it was part of a blind study. (Maybe they will send me out a copy after the study is published, I can only hope.. I really tried to get a copy but cant currently).

    So anyway.. all psychriastrists I have had proper appointments (not part of a study) with have done is pronounced me not at all disabled and accused me of making up my symptoms. They have made things worst for me here due to their biased on people who have ME/CFS diagnoses and that we are a mob of fakers and people trying to get attention.

    Llast time I had a run in with one was at the hospital only a couple of months ago when I'd attempted suicide again after being abused by the disability service over the phone. He told me all my symptoms are in my head without even looking at my hospital notes to see that I often end up in hospital having to have an saline IV after collapses or to see that I was on one of those occassions so dehydrated that my kidneys werent even functioning well).

    Even if I had those tests thou, disability service would still ignore as they wont even look at my tests!! and they are only helping illnesses on whatever list they have which qualify.

    It shoudnt be difficult to prove in court Im in a bad way without that as I have doctors, a physio Ive seen and others who should support that and I had 3 different doctors/specialists support I needed a wheelchair.
     
    Last edited: Jan 26, 2015
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  15. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I guess what I am getting at is it might be worth considering a change in the name of your disability. If there are too many hurdles to getting disability on the basis of having ME, it might be time to change tactics. That was why I suggested going to a psychiatrist, provided you can find one to support your case. For me, getting the disability was more important than naming it.

    I also might add that although I am quite seriously affected by my disability and that it is slowly worsening, I don't appear to be as bad as you. I am confined to bed for 95% of the day, but am still mobile if need be. I have no social contact with anyone, even family and crash very easily from positive or negative stressors.

    I didn't apply for disability as an ME sufferer, but with a range of psychiatric conditions. I had a psychiatrist report, as well as the mental function test. I might add, the function test helped convince the psychiatrist there was something wrong with me.

    The function test is not a diagnostic test of any illness as far as I am aware, but simply a test of your ability to function, so it may be allowed. When coupled with a good psychiatric report, you may have a better chance.

    In my interview with the Centrelink psychiatrist, I deliberately did not raise the subject of ME or CFS, although she did so I am uncertain on what grounds I qualified. I had the impression the govt psychiatrist was not skeptical of CFS. I even admitted to her that I believed it may have gone against me if I had said I had CFS. At the time this may have been true, but in later years many seem to have qualified with ME and CFS as a basis for disability (in Qld). I'm not sure how CFS is regarded at the moment and note there appears to be a tightening of policy for depression and anxiety.

    I am pretty sure the psychiatrist report referring to depression, anxiety and fatigue, coupled with the number of hours I could work is what helped in the end.

    My psychiatrist is convinced I have a physical illness - he treats me for the psychological issues stemming from that.

    It may not be the right course to pursue ME as a basis for your disability, for the reasons provided in other posts.

    I recognize you are in a very difficult position, and hope my advice doesn't come across as simplistic. I wish you all the best.
     
  16. Valentijn

    Valentijn WE ARE KINA

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    That's probably where those services are very much in error. I don't think any country has a discrete list of what condition can or cannot qualify as a disability. Instead, the determining factor is the disabilities experienced. A disability is a disability. An illness or disease or condition or diagnosis is not a disability.

    If they are denying your disability because you have an ME diagnosis and they don't believe it exists, then they are clearly not doing their jobs, and they are discriminating against you because of that diagnosis.

    There are at least a few things you need to prove to the court:
    1) That you are disabled
    2) That you are not receiving the care necessary for your disability
    3) That they are deliberately denying you that care due to the label of your illness

    You do not need to prove what ME/CFS is or is not. That's just your diagnosis, and it is a peripheral matter.

    The core matter is that services should not be allowed to choose to provide less care for people because they have a specific diagnosis, or because of their beliefs about those diagnoses. It isn't an ME/CFS matter at all, but rather a more general issue of bias by people who are deciding how much help you should get.

    So what you need to focus on for #1 is describing your symptoms and the limitations which they cause you. And for #2, how insufficient assistance has negatively impacted you: dirty environment, food emergencies, psychological impact, inability to get to doctors and pharmacies, etc etc. And for #3 I think you have records or recollections of things they've said which suggest they are denying the care due to not believing ME can be a serious disease?

    If you get caught up with arguing about what ME is, you'll annoy the court and won't sound credible. It's really best to stick to the basics, aside from a VERY brief description of the illness for those who have never heard of it.
     
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