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My disability company drives me crazy! Need advice.

Discussion in 'Finances, Work, and Disability' started by Iritu1021, Nov 19, 2014.

  1. Iritu1021

    Iritu1021

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    I've applied for my private disability coverage almost six months ago. After six months of extensions, unreturned phone calls, additional requests from records, I've nearly reached the point of bankruptcy and psychological breakdown. I've been bed bound most of the summer and am still confined to my home on most days.

    My tests showed very high titer of IgM EBV virus so I have chronic active mono and diagnosis of CFS from a physician that specializes in the disease. I also have POTS, autoimmune thyroiditis, hypothalamic dysfunction, anxiety and depression.

    My occupation (ironically) was hospital physician - which is too strenuous and exhausting even for most healthy people - and the insurance is specifically meant to cover me if I can't perform my own occupation (not just any occupation).

    According to CDC website high EBV IgM titer is consistent with diagnosis of medically disabling CSF. Yet despite all that, today I got a call from them saying that their physician has (finally!) reviewed my records and found no evidence of disabling condition. I guess at this point all I can do is get a second mortgage on my house, borrow money from family and appeal...

    I'm hoping to hear about other people's stories about how they handled their group or private disability applications, the success rates of appeal, any advice on what I can do to improve my chances, or any moral support would be greatly appreciated.
     
    Last edited: Nov 24, 2014
  2. Gingergrrl

    Gingergrrl Senior Member

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    @Iritu1021 I am so sorry you are going to through this and have some ideas...

    First, if you can break your story into a few smaller paragraphs more people will be able to read it and give you feedback. I am able to read it as is, but I know long paragraphs without breaks are hard for many on the board.

    Second, I would eliminate the name of your disability company in the thread b/c they may find it in a Google search and identify you. From the moment I joined PR, I decided I would never post my name, my employer's name, or the name of my disability company in a thread for that reason.

    Okay, now to my feedback... I am in a similar situation as you in that I worked for a major hospital for 12 yrs, although as an LCSW and not a doctor, but in a very demanding job. My hospital did not pay into the state disability system and we had the option to buy a private disability plan which THANK GOD I did when I first got hired. I paid into it twice a month from my paycheck for 12 years and my understanding is that if you have a valid doctor's note saying that you cannot work, they cannot deny you b/c you paid into this plan with your own money. However, it is a different company than the one you mentioned and I live in a different state so things could vary.

    I was assigned to a specific case manager at my disability co and even though I sensed from his attitude that he did not believe that I was too ill to work, he had to comply with the rules. And he knew that I knew that as I had him send me written policies and laws pertaining to my status. Granted I did not understand half of what I read, but he did not know that. They made me and my doctors fill out unbelievable amounts of paperwork but I did every single thing that was asked of me.

    I also have high IgM titers to EBV, POTS and serious autonomic issues, and autoimmune thyroiditis (Hashimoto's) so our symptoms are very similar. Initially my endocrinologist was doing my paperwork (b/c he was the only doctor I had) but then I saw a CFS specialist. He wrote my disability co a letter explaining that I was extremely ill from multiple disabling conditions and that I was physically unable to work in ANY job in ANY capacity anywhere, anytime, period. He said that he was actively treating me and that it would take at least one year to see an improvement in my condition.

    They accepted that letter along with all his notes and I was then approved for a block of time (this goes through January) so I no longer had to do a massive stack of paperwork every month. In Jan, this all changes and I will have to apply for social security disability and if approved, it will be subtracted from what I am paid from the disability co. If I am not approved, they have advocates who help you (b/c it is in their interest to get you approved.)

    I addition to my cfs doctor, I now have a cardiologist who hospitalized me and feels that I am in the sickest 25% of his patients from an autonomic perspective. He is a new doctor for me but when I have to do more paperwork in Jan, I know that he will help my case by providing the facts which is that I can only walk a few feet without a wheelchair, etc.

    At the end of Feb, I will have been out of work for one full year which is unbelievable to me b/c I loved my job and career. But I am extremely ill and have no choice but to accept the disability which pays 70% of my former salary. My recommendations would be to find out your legal rights (since it sounds like you paid into a private plan like I did) and to find doctors who will be able to document how disabled you are from CFS and POTS (vs. just stating that you have a positive IgM on EBV which sadly no one cares about.)

    I hope this is helpful and welcome to PR!
     
    Last edited: Nov 23, 2014
  3. Ema

    Ema Senior Member

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    Get a good lawyer. Immediately.

    I can't even speak about my LTD experience because it is so upsetting still but I had all the documentation from my doctors and they still found me able to work my job specifically (ironically on the same day the social security judge declared me unfit to work *any* job). And there wasn't a darn thing I could do about it. They got to lie all the way to Federal Court and I was never even allowed to speak for myself in front of a judge thanks to ERISA.

    These companies will do anything to keep from paying especially in cases like ME/CFS where there are few if any objective tests showing illness. You absolutely must have an extremely competent attorney from day 1.

    I'm so sorry that you are going through this stress on top of it all. It is criminal. I wish you good luck.
     
  4. catly

    catly Senior Member

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    Welcome @Iritu1021 to the forum.

    There is some good information here from the Massachusetts CFIDS organization on disablity. I know I read some recent updates on disablity from an attorney expert on ME/CFS, but I can't remember where, it acutally might be from the Mass CIFIDS site.
     
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  5. Ema

    Ema Senior Member

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  6. minkeygirl

    minkeygirl But I Look So Good.

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    Please break your post up. I can't read it. I'm currently on disability so I know what is up. I also can't read gingergrllls because it's too long.

    I will say that companies are in the business of denying claims. It doesn't matter if you have CFS or not. I also just found out via Linda Nee's blog that they like to deny people in the last quarter of the year.

    I would call her and pay for consultation first before calling a lawyer.
     
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  7. Wally

    Wally Senior Member

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    @Iritu1021,

    You can also contact your State's Insurance Department. The Consumer Help Line in your State is 1-800-252-3439. (8 a.m. and 5 p.m., Central time, Monday-Friday). See, the links below for additional information.
    1) http://www.tdi.texas.gov/
    2) http://www.tdi.texas.gov/pubs/consumer/cb003.html
    3) http://www.tdi.texas.gov/consumer/complfrm.html

    You might also want to take a look at the following links here on the Phoenix Rising website.
    1) http://phoenixrising.me/living-i-th...sability-iv-chronic-fatigue-syndromeresources
    2) http://forums.phoenixrising.me/index.php?forums/finances-work-and-disability.22/
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    I'm sorry and for some reason it is so hard for me to write short posts! :D
     
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  9. Kati

    Kati Patient in training

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    Hi @Iritu1021 welcome to the forums. Am sorry for your troubles, disability insurance is a messy business. They will try everything to make you give up asking for benefits, and they will deny deny deny.

    Linda Nee as mention above would be a great ressource for you. Check out her blog, she has lots in there, and you could also hire her to assist you.

    Disability insurance care about your functionality. Even if your lab work shows infection, they want to know if you can push a pen and work. A good physician used with disability would use the proper wording in their report that says you cannot perform sustainable work at the time being, and any occupation in 2 year time. Get a proper doctor that will back you up even if you have to travel. i have Nancy Klimas in mind, she wrote a disability and ME book and has lots of experience, but there are others too.

    Please start journalling your symptoms daily and how effort compromises you. Make sure you get regular dr visits and that your physician is documenting with litigation in mind. He/she has to document your activity levels, and what happens if you are trying to be more active.your dr must write you are not fit to work and for how long (indefinitely, for 6months and reassess, etc.)

    Be aware that even if your insurance company is not doing anything they could surveil you. While unsettling, these people would do anything so they don't have to pay you. Just be careful if you are going out.

    That's all i have for now. Never ever give up. They will have to pay.
     
    Last edited: Nov 19, 2014
  10. *GG*

    *GG* Senior Member

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    I was going to suggest the 2 day in a row exercise test, but being bed/house bound probably precludes that, @Iritu1021 right?

    GG
     
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  11. acer2000

    acer2000 Senior Member

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    You need a lawyer that knows how to demonstrate disability in CFS cases for whatever type of disability plan you have. They are out there. One presented on this topic at the 2014 CFS conference but I can't recall his name off the top of my head.

    You will likely have to get medical testing to demonstrate your functional impairment, if you have not done so already. I know it sounds ridiculous, but they don't care about lab values and symptoms, they just care about objective tests that show you can't do your job. Typically this means doing an exercise test for v02 max and anaerobic threshold to show the fatigue, and cognitive testing to show cognitive impairment.

    Also, my advice, don't seek disability under depression or any other "mental" illness, even if it seems easier to obtain. Its not the reason you can't work, your CFS illness is, and the benefits are limited to 2 years under psych diagnosis. Its ridiculous, but thats the way it is.

    Also, once you are approved under your plan, you will likely from time to time have to go through the whole mess of testing again to prove to them that you are "still sick".

    Also, if you have an ERISA plan, you will have to apply for Social Security Disability. Then they will reduce your private company benefits by the amount the government pays you. Its nuts, but apparently the insurance lobby helped write the ERISA law so that they can reduce their liability. On the plus side, once you get SSDI you will get Medicare. You will likely need a lawyer to help you get SSDI also. You may or may not be able to charge it to your private insurer if they require you to apply.

    Also, if you do get benefits, you should talk to an accountant. In my case, I got back benefits of 3 years and it bumped me into a much higher tax bracket. I think there was probably a better way to get the payments scheduled. On the bright side (I guess) you can deduct all of your legal fees and medical expenses that you pay when seeking and preserving disability.

    HTH
     
    Last edited: Nov 19, 2014
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  12. Ema

    Ema Senior Member

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    I got back benefits from SSDI as well and there is a tax form to amend previous returns and allocate the funds to each of the years so it doesn't all count as one year's income. Of course, one has to have little income in those three previous years as well to make this helpful. Unfortunately, many people don't have any income while waiting for approval so this does help for some.
     
  13. Iritu1021

    Iritu1021

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    Thank you very much for your replies. I think testing me for disability now would be ironic because I'm now actually improving with the treatment. Maybe I'm too optimistic, but I'm afraid (or rather hopeful) that by the time we get to any administrative hearings/lawsuits, I should be physically capable of working part time.

    The question will be then is how do I prove to them that I was sick six months ago when I first applied? Once I can work, I'd rather work than be on disability but I want to collect what they owe me for the time I really couldn't work. I'm definitely not going to stop my treatment and "keep myself sick" on purpose just to collect the money down the road if they decide to test me. The whole process and beurocracy around it is quite astounding and it's ridiculous that I have to prove my sickness a year after I first reported it to them.

    I appreciate all of your advice and suggestions. I did speak to a disability lawyer last night (from a firm that specializes specifically in dealing with my disability company (apparently they are some of the biggest violators out there; they have only one star on consumer report). I sent him some paperwork, will ask my CFS doctor to write them a letter, we will try to appeal and see what happens. It just sucks that it all has to take so long and be so tedious and that they put sick people through such grinder. I think we need some class action lawsuit to change the system!

    I broke down my post above for those who couldn't read it. My apologies, I was just in "blurting it all out" mode when I was writing.
     
  14. acer2000

    acer2000 Senior Member

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    It's worth noting that most disability companies allow for a "work trial" period where you still get benefits and you try to go back to work. So since you aren't better yet, don't know if you will get better, and don't know if you will stay better, it might be worth still appealing and getting benefits. Then if you think you are strong enough to go back to work at some point, cross that bridge. Then at least you have precedent. Everyone's situation is different, however.

    It's also worth noting that most LTD policies require you to be ill for a while before you even apply. In my case, I first took medical leave from work on a short term policy. This lasted a a whole year. Then when it was clear that I was still really sick and unable to do my job, I was turned over to the long term policy. It was much harder to get LTD approval than STD. The STD company seemed like they actually listened to my doctors and wanted to help me. The LTD policy tried everything in the book to get out of approving me. My point is, depending on how long you have been sick and what your policy says, you may or may not qualify for back benefits under LTD.
     
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  15. caledonia

    caledonia

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    I've been through this too. I'm glad you have a lawyer handling the appeal. That is the correct thing to do.

    While I'm glad you're starting to feel somewhat better, you're not really "better" until you can handle full time work again. In other words, you should still be eligible for disability until that occurs. It's kind of dicey whether you should attempt part time work while you're applying. Consult with your lawyer on that.

    To prove disability, you need need various functional capacity tests. They should tell you what kind of testing is required to determine disability. If they don't, they are in violation and can be sued based on that.

    The best tests are:
    1) a functional capacity evaluation to show how pain and fatigue affect your ability to work
    2) a neuropysch test to show anxiety, depression and cognitive impairment
    3) a record of continuing disability accomplished by visiting your doc every 3 months and recording that you're still disabled.

    There was a post recently about how a neuropsych test might not be the best thing for LTD, but I think it's still ok for SSDI. https://www.masscfids.org/resource-...ting-disability-insurance-and-social-security

    If your LTD policy has a 2 year mental health exclusion, they will try to limit you to that by making your illness look psychological. You can try to get around that by getting your doc to write a letter that any psychological illness is secondary, and a consequence of the physical illness.

    If you get to where you can't work at any occupation, you would be eligible for SSDI and should apply for that, the sooner the better, as it can take a few years to get approved. You can use all the same testing as medical evidence.

    In the meantime, finances are going to be a big issue. You'll need to do everything you can to live frugally - cut the cable, don't buy anything, sell your stuff on eBay, borrow from family, downsize, or whatever it takes.
     
  16. Ema

    Ema Senior Member

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    Sued as a part of the ERISA appeal or separately later, I wonder?

    They would never tell me what sort of testing they were looking for. Just told me that everything I provided was insufficient to prove disability. :(.

    Of course, it's been 2.5 years now since I lost the appeal. I'm sure it's too late to sue them now. But it is tough to get over.
     
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  17. Kati

    Kati Patient in training

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    Functional capacity test does not take into account post exertional relapse, so it is completely possible that some patients pass that test with flying colors and are terribly ill. I remember mine clearly. It was over 1.5 days and It made me sick for 3weeks, amd yet in my report the physio said I was deconditionned and i should undergo 6weeks of intensive rehab and quickly return to work

    Thread carefully.

    A neuropsych performed by a psychologist expert in ME issues (I always forget her name) can be very useful (but costly) because it measures the capacity to concentrate among other things

    moreover a quarterly physician visit is not enough for a newly diagnosed patient. You need monthly visits with good documentation and patient need to follow what the doctor is telling you. In the end the doctor has the last word, if he/she recommends you should not work or you are unable to, that precedes over the insurer.
     
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  18. Gingergrrl

    Gingergrrl Senior Member

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    @Iritu1021 I think I misunderstood your first post and thought you had recently gone out on medical leave and were being denied STD through a private company that you had paid into from your paychecks. I am still on STD for the first year which (depending how they calculate it) runs out at the end of Feb for me. I have already been transferred to a new case manager in the LTD Dept (of the private plan) who approved me through Jan. Once I apply for Social Security I will most likely be consulting with an attorney, too.
     
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  19. acer2000

    acer2000 Senior Member

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    The recommendation would be to do a 2 day back to back exercise test according to the Stevens protocol from Pacific Fatigue lab and then cite their research.
     
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  20. Valentijn

    Valentijn WE ARE KINA

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    A one day test would be more than sufficient to prove disability. The 2-day is only useful for proving the pathology of that disability.
     
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