Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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question for Australians

Discussion in 'General ME/CFS Discussion' started by taniaaust1, Aug 27, 2016.

  1. taniaaust1

    taniaaust1

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    Sth Australia
    question 1 - Are you Australians getting any government services eg home support or carer support for actual ME/CFS?
    (Im interested in those who have been approved for ME/CFS rather then other things).

    question 2 - Ive also been told that the new national disability insurance scheme doesnt support my states disability service in covering ME/CFS. So Im also separately interested in anyone is currently on the new NDIS scheme and getting support services for actual ME/CFS (not for other things).

    thanks
     
  2. purrsian

    purrsian Senior Member

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    I'm not, as I haven't been able to find a doctor who will support it. They're all like "we need to try various treatments first, as Centrelink is quite stringent on things these days and won't accept you till you've tried these things". Still not sure what those treatments are, as she then kept wanting to talk about depression/mental health and my POTS treatments.

    I think that in QLD, ME/CFS can still be claimed as the reason for disability but by the sounds of it, it's not as easy as it should be.

    Oh and I'm more referring to getting pension, is that what you were referring to, or did you mean services like carers to help? I don't need anything like that as I am mobile and have family who take care of things when I can't.
     
  3. alex3619

    alex3619 Senior Member

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    So far as I am aware, nobody, anywhere, gets much support for ME/CFS. That is not how the system works, anywhere. Disability pensions and support services are supposed to work on an assessment of need, though they assess this wrong a whole lot, in large part due to ignorance of ME and CFS. Getting an extensive and accurate assessment of need can be a huge hurdle.

    There are a few exceptions such as lifelong genetic problems that can make services just a little easier to get, though again this often requires years of fighting for them by careers and guardians. Down Syndrome is an example of this.

    I am concerned that the NDIS goes beyond this typical hurdle though. It looks like its constructed to keep many people out of receiving services, while extolling the virtues of the system by pointing to people it helps. I hope I am wrong about this, or this will be adjusted in time, but it might take advocacy to get change to occur.
     
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  4. AndyPandy

    AndyPandy Making the most of it

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    Q1 - No I haven't tried in NSW where I live now. The only thing I tried to get was government physiotherapy services in the ACT where I used to live. I was knocked back on the basis that ME/CFS was not a neurological condition. I argued with them about that and succeeded but after one session with an ill informed idiot who was keen to push me past my limits "to see what happens" I declined further services, pointing out the dangers of that approach.

    Q2 - When the NDIS was first proposed I was aware of some early discussions that ME/CFS was not considered to be a permanent disability and therefore not covered under the NDIS. I think at that time there was a website where you could check if you were likely to be eligible for NDIS. I never bothered to pursue it further.

    Emerge might have some information on these questions.
     
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  5. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    I saw something on NDIS issues on Emerge or from Emerge some while back. I do not recall what it was, but they were aware that the NDIS might be an issue.
     
  6. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
  7. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Mel9, Snow Leopard and Valentijn like this.
  8. AndyPandy

    AndyPandy Making the most of it

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    There are some NDIS information sessions coming up near where I live.

    If I am well enough I will go along and see what I can find out about their position on ME/CFS.
     
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