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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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SS Disability

Discussion in 'Finances, Work, and Disability' started by sleepy, Sep 29, 2009.

  1. sleepy

    sleepy Guest

    I have been ill with many illnesses for 6 yrs. I kept thinking I would get well again so I didn't apply for disability. I have to do something so I asked my dr today to sign a paper stating that I wont be able to work for the next 12 mths my Dr said There's no doubt that I qualify but "The paper work is just too much so he doesn't get involved with disability claims any longer." Has anyone else experienced this and can a lawyer get around this?
  2. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

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    Hi,

    AFAIK such a signed statement, if submitted by the patient, will not be accepted by SS. All documents must go directly from the professionals to SS. Back when I applied it was done as follows.

    Call SS and schedule an application interview. The interview can be done in person or on the phone. I did it on the phone at my scheduled time and date.

    SS will then send you a bunch of paperwork and instructions. This paperwork should include release forms to be signed for submission of your records along with other paperwork. I don't recall for sure but I do believe that I had to send the releases to SS for forwarding to my doctors etc. I do know that SS will only accept records that come directly from the doctors.

    In my case I had been ill for decades but managed to go back to work part time with special accommodations for MCS & CFS. I had tons of medical records and no real way to guide the process into a specific diagnosis from SS's point of view. I gave them a long list of illnesses and they said they would decide how to categorize me, an internal process where I would have no further input.

    After a certain amount of time and record gathering, I know that my case was given to an examiner at the state level for review and approval/disapproval. Since I had delayed my own submission in the foolish belief that I would manage to get back to work yet again, I was desperate for financial help. I managed to get the examiner's contact info so I could bother him on a fairly regular basis until he approved my claim.

    For a while afterward, I had trouble getting SS to tell me the "official" reason that I was disabled. It took a situation where I needed a letter for an insurance company to get that information. Of course, with the long list of diagnoses I had, they could never believe that I am sane and labeled me a psych case. I could not afford to worry about that since I needed the income so badly. I have had a lot of testing since that time. If I ever do get called in for review, I now have plenty of evidence of the physical damage.

    That is how things worked for me back some time in 2006. I was really lucky to have a social worker who helped me back then as my health had totally crashed and I was just a lump on the floor by the time the application was processed.

    Just want to note that I didn't have to deal with the appeals process. Many claims are denied the first time around but a large proportion of claims that are appealed are won. Some folks I know have used lawyers at that stage but I have seen folks handle their own appeal and win. Someone who has been through that part of the process is obviously more qualified to speak about it than I am.

    One other thing I will mention is that I believe that I got through the first time because I had a huge stack of medical records. It is actually funny that they categorized me as psych since I had very few records WRT psychological issues and a large stack of records of physical illness. I think that as soon as they saw things like Fibro and MCS, I was pigeon holed. I also bet that the notes from a couple of doctors said pain and fatigue due to depression instead of the truth - depression caused by chronic pain and fatigue....


    Peace,
    Lost
  3. caledonia

    caledonia

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    You might have to get a different doctor who will support your claim for disability, or you might have to pay him for his time filling out forms. You can make an appointment with your doctor to help him fill out his forms on you.

    Actually, I don't think the doctor side of the forms is nearly as bad as what *we* have to fill out, so I don't really know what they are complaining about.

    When I did my claim (in 2001), I called the 800 number, then had to go to the local office to get a claim started. Nowadays, you can file online at ssa.gov. Make copies of everything you send them because they are notorious for losing things. They will ask for your doctor's info, then they will request info from your doc.

    A great resource is the Disinissues group (google to find it).

    You can either use a service like Allsup who will take your claim from the beginning, or start the claim yourself and find a lawyer after you've been denied. I've heard mostly good things about Allsup, but heard a few bad stories too.

    If you've been unable to work full time for at least a year, you already qualify, you don't need the statement that you won't be able to work for the next 12 months.
  4. KC22

    KC22 Senior Member

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    Hi Sleepy,

    I am sorry to hear your doctor will not help. What if you offered him a fee for his time.
    Are most of your records with him??? You will need some kind of physical evidence to show you disability.

    The one piece of advice that I believed helped my case was to write a cover letter explaining my limitations and then listed all my evidence by doctor, date and what it showed. I then sent it to Social Security certified mail with all my evidence.

    Yes, I have heard that they lose evidence and this way there was documentation that I sent a lot of evidence and they signed for it.

    I did not use an attorney and was approved on my second try. I really believe this letter and the 20 pieces of evidence helped.

    The Disinissues group that Caledonia mentioned was very helpful.
  5. MEG

    MEG Senior Member

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    Disability

    Lost,
    The replies above have tons of good information. It is a tough process getting qualified. I was denied twice, then got an attorney. I do think three things REALLY helped my case.
    1: I kept a diary every day of symptoms and what I had tried to do to help myself..stretches, meditation, massage, accupuncture etc. I was VERY explicit. ex: I had trouble brushing my teeth today because of poor arm strength. Can't take a shower because I can't lift my arms over my head to wash my hair. Could only eat a sandwich today because I was unable to cook a meal. Can only walk 40ft due to severe shortness of breath. Get the idea? Be as explicit as you can.
    2: When filling out the initial SS paperwork, I was also very explicit and comprehensive. ex: can't leave my home without the assistance of another person, cannot walk on anything but flat surfaces for 40 ft. Cannot make my own meals, must use frozen foods. Depressed from social isolation due to my inability to leave the house. Cannot tolerate conversations of visitors without severe fatigue, leaving me in bed. Define your particular fatigue. Be OBJECTIVE, not subjective, as much as you are able. That is what they are looking for. Like, instead of saying you have trouble sitting upright in a chair, write that you can only sit upright for 5 minutes without severe pain in your legs. Define, define...
    3: Call your congressman's office. They have staff that deal with people trying to get SS Disability. Mine was VERY helpful. Keep bugging them! They carry a lot of clout for their constituants.
    Best of luck...contact me if you feel I can be of any more help. I would even be willing to fll out your paperwork with you over the phone. And try your best not to get discouraged! Remember, I was denied twice. And so are many others. Then I got a local lawyer, whom I undrstand are better than the ones on TV...he will get a cut, but in my case I needed the SS money so badly I was happy to give him his cut.
  6. MEG

    MEG Senior Member

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    Lawyers

    Lost,
    I saw above that someone mentioned Allsup. They may be good, but two of my friends have been denied Social Security Disability before a judge because Allsup sent a representative that didn't fight. Both attorneys (from Allsup)were very apathetic. Just my 2 cents worth. However, once they were denied before a judge,(with Allsup) Kathi and Judy have local lawyers that are taking their cases to the federal level...not regional. You'll just have to make this decision for yourself...it is a very personal issue about what you feel most comfortable doing.
  7. jenbooks

    jenbooks Guest

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    May I ask how anybody is surviving on SSDI? I know somebody who has psychiatric disability (for bouts of depression)--he got a lot from the sale of his brownstone which doubled in worth over six years, plus his new wife is retired with a pension and inherited a small house in New Jersey--then they moved to Ohio where they bought a nice cheap house as well. So his $1000 a month plus her pension etc...it's an easy life. But there were other assets and money as you see.

    Do you move to section 8 housing? What if you have MCS and mold and noise issues? How do you get the care you need? As Wayne noted on Mike's New Day thread--Mike's doc and Joey's doc Bigelsen don't take Medicaid (is it Medicaid for ssdi?)

    Plus you get punished financially if you do work, and if you earn a certain amount in 9 months, your ssdi goes away.

    It seems pretty tough.
  8. Jody

    Jody Senior Member

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    Hi Sleepy,

    Welcome to the forums.

    I'm afraid I can't offer any advice in this area as I didn't qualify for disability, ... and I am in a different country anyway. :)

    But I'm glad to see so many offers of suggestions already. :D Hopefully there will be some things here that will help you.
  9. caledonia

    caledonia

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    Allsup suggestion:

    Now I've heard several stories about Allsup that seem to follow a pattern. If you get a good representative, they can get you approved early in the process. If you don't, you'll get denied twice and have to go through that long wait for the judge, where Allsup doesn't seem to do as well.

    You don't want to get denied by the judge, if possible, because then you have more years to wait to get to the Appeals Council, and you should also be starting a new claim at this time. It just adds more years to all already quite lengthy process.

    So my suggestion would be, if you start with Allsup and don't get approved early, then switch to a local disability lawyer to handle the judge.

    The file that my judge saw was essentially the same as what the State Determination Service saw. The only difference was that I had an even longer record of continuing disability, which was accomplished by visiting my doctor every 3 months and documenting that I continued to be disabled with no improvement. My judge like this evidence the best, he said.
  10. dannybex

    dannybex Senior Member

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    I agree w/Marian + My two cents...

    Marian has some excellent suggestions (as do others)...thanks for posting those!

    But keep in mind, that while not all lawyers are scummy, it's in a lawyer's best interest to prolong the case as long as possible -- that way their 25% commission is larger. (When you win all back payments, they get their share of those back payments as well.) In fairness, it's in the government's best interest to also prolong your case...

    I never made enough money (consistently) to qualify for SSDI, as I had stopped working for years to take care of my mother, then my next job didn't pay so well...not enough to pay taxes for the first several years.

    But years later I did eventually have to apply for SSI, and with the advice from a local support group member, I got it on my first try. As did she, and several others in the group.

    Her best advice: When filling out all those endless forms, do not try to make everything 'perfect' and 'readable', etc. If your brain fog is bad, and you can't spell something correctly, or you can't remember this or that, then cross it out there on the page and write "my brain isn't working today" or something to that effect.

    Her point was, that if your forms look like they're filled out by a somewhat competent person, then they'll look at them and say "Hey, this person isn't disabled...they can work."

    You want to emphasize your DISABILITIES, especially if that includes concentration issues, brain fog, etc., as those will certainly keep you from holding down a job.

    Just days before my last 'interrogation', I was about to be turned down. (A tumor was found on my pituitary gland, and they (and I) thought that might be the cause of my CFS. It wasn't...it turned out to be benign, and just affected my vision.)

    Anyway, during that final interview (with the psych doc that they make you see) my brain fog was so bad, that 2 minutes after he read off a list of 6 words to remember, I could only remember 2. I was so frustrated, so worn out, I started balling like a baby. I couldn't stop for several minutes...the whole process had just been so grueling and demoralizing.

    But I must've gotten through to the doc, as 2 days later I was approved.

    Hope this helps,

    Dan

    p.s. brain fog is even worse now...it took me 45-50 minutes to write this. :(
  11. MEG

    MEG Senior Member

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    Agree with Dan

    Dan, More good ideas. I like the part about being "real" when you have the psychiatry appointment. Don't try to grand-stand. Be who you are now. I also couldn't remember more than 2 words! It is OK to let the doc know you are depressed....my gosh, we have a horrid illness and it would be abnormal not to be depressed.

    How to live on SSD money? Would someone please tell me? I have to be super frugal. Nothing extra. It is unfair how little we get.
  12. Dreambirdie

    Dreambirdie work in progress

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    my SSI story

    Hi Marian--

    I got SSI WAY BACK in 1988, after my third and worst set-back with CFS/MCS. Almost everyone I knew at that time told me that I would **never** get SSI for this. They told me I should forget about CFS and Environmental Illness (now MCS) and apply as a severe depressive. This sort of pissed me off, which was a good thing, as it motivated me to prove them all wrong. Which I did! In one try! :cool:;):)

    I filled out the forms very correctly, and articulated AT LENGTH all my symptoms.
    On the day of my psychiatric appointment, I was very ill with a nagging sinus infection and I looked exceptionally awful, which was perfect timing. The psychiatrist asked me to "describe my life," which I did in detail, emphasizing all the effort it took to just get through my day, the total lack of support I had from my family, the social isolation. I was very honest with everything I told him, I exaggerated nothing, and I did not get emotional. Finally, he said, "this is REALLY depressing." He was impressed with how well I coped with it all, and told me he would do whatever he could to help me. He even asked me what I wanted him to do. I was lucky to get such a good shrink for an interrogator.

    The doctor, on the hand, was not so compassionate. He grilled me with a fast moving stream of questions, that I could barely keep up with. His office was newly carpeted too, which made me dizzy and queasy from the start. On top of it, I had eaten a rancid avocado an hour earlier. I kept telling the doctor I felt like I was going to vomit, and he kept ignoring and dismissing me about this, until I finally did, projectile style on his new carpet, in mid interview. Somehow, there was a little justice in this. :)

    I think I was one of the few people I knew at that time who was able to get the SSI for CFS, and I'm glad I did, because at that time I really needed it.
  13. Kati

    Kati Patient in training

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    lOL@Dreambirdie- well done! :D I wish I had that skil on demand.

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