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Lupus: Applying for Disability

08/01/2011

  • Christine Miserandino:

    Lisa, I know that you are on Social Security disability, and I know that process can be a bit daunting.

  • Lisa Pittarelli:

    It was an absolute nightmare. That’s the only thing I can say about it.

  • Christine:

    And I am sure so many people are feeling that, and that’s why we brought Winnie here -- Winnie Pannell, she is a Social Security disability specialist.

    How can we maybe empower our audience with some skills to make our claim go easier or better? What can we do?

  • Winnie Pannell:

    I think the first thing to do is when you go to the physician, take a note -- sign it Christine, sign it Lisa -- date it, and explain what’s going on. You know, "I have been running a fever. I have severe fatigue. I've had involuntary weight loss. I can’t sit long. I can’t stand long. My fingers don’t work on the computer."

  • Christine:

    So keeping notes.

  • Winnie:

    That's right!

  • That's right!

    And keeping a journal even ...

  • Winnie:

    And put it in the doctor’s files, and say, "Would you please keep it?"

  • Winnie:

    Because at some point, if your physician is asked, "How is Lisa functioning? How is Christine?" If they don’t have a clue, they are going to say, "I can’t respond to this, I don’t know."

  • Christine:

    OK.

  • Winnie:

    They may not understand that you have lupus "brain fog," and that is, sometimes you don’t concentrate, you make mistakes at work. They may not understand that you are an unreliable employee, why? Because your lupus is unpredictable. You may be there three days, one week, five days the next, you never know with lupus, right?

  • Christine:

    Miss some weeks altogether.

  • Winnie:

    And the other thing, in terms of the physician, they are very busy, and so oftentimes, they’ll just write back and say, "My patient is 100% disabled. He can’t work," and of course, Social Security will throw that in the trash can. That tells them nothing.

  • Christine:

    One sentence is not enough.

  • Lisa:

    And there’s a very short turnaround period, I found out. Sometimes, they will only give you 10 days from receiving the letter to respond.

  • Winnie:

    If you need an extension, ask Social Security. Because what physician can write your diagnoses, the clinical findings, the objective findings, your subjective complaints, your treatment, your side-effects, your medication and your function in two days, if you can ever get them to.

  • Lisa:

    I totally agree. To me, documentation was the key. I took it upon myself to copy everything -- the notes, the lab results, X-rays, everything, and I sent it in with my initial application. I did get approved the first time, thank the Lord! And the case worker said, "I am really glad, you sent those records in, because when we submitted requests for all your doctors and hospitals, none of them sent anything in." She said, "You would have been denied."

  • Winnie:

    Wow!

  • Christine:

    So now, what can I do to maybe speed up the process, or to make the process go as smoothly as possible?     

  • Winnie:

    You first apply for Social Security -- more than 85% of the people are denied, when they apply.

  • Christine:

    So we should expect that, and not take that personally.

  • Winnie:

    That’s right! And you should appeal -- and you should appeal on time, or you will lose your claim. So then you go back into reconsideration. Over 80% of the people are denied the second go-around.

  • Lisa:

    Oh, really!

  • Winnie:

    One of the biggest mistakes is people just feel defeated right off the bat, when they are turned down, and so they drop their claim, which means eventually they will reapply, and they may lose some benefits, they may lose all of their benefits, because they wait until after their insurance status is expired.

    Now where does that leave you? You have an option to go to a hearing before an administrative law judge. Now I’ll say, right now, you don’t go to a hearing before the administrative law judge without an attorney ...

  • Christine:

    OK.

  • Winnie:

    ... because that is where most claims are won, particularly if you have lupus. 

  • Christine:

    Gotcha.

  • Winnie:

    OK. You could be looking at a year or more before you are even able to request a hearing.

  • Lisa:

    That’s a long time.

  • Winnie:

    It’s a very long time.

  • Lisa:

    What do you do?

  • Winnie:

    Here is one of the problems. When Social Security asks a claimant, "Who are your doctors?" And you fill out the paperwork and so forth, most people start with the doctors they are treating with now. Well, you both know, you may have been through five or six years of physicians, half of whom didn’t even know what was going on with you, right?

  • Christine and Lisa:

    Right! Definitely.

  • Winnie:

    OK, all of those records are important. You don’t just wake up and say, "I am disabled." So an attorney at that second stage oftentimes can look at the claimant and say, "Wait a minute, this file is totally inadequate." We want to show five years of struggle with this disease -- and you have worked the whole time.

    Don’t forget this, your rabbi or your minister, your priest, your parents, your husband, your friends -- all of these people know pretty well what’s going on with you. Those sources can be used.

  • Christine:

    Really?

  • Really?

    You bet! Get an affidavit from your parent or from your minister.

  • Christine:

    Because that goes towards the social aspect that you were speaking about.

  • Winnie:

    Let’s say that you planned a birthday party for your 5-year-old. And guess what? You don’t go. And that can be an evidence to show an administrative law judge. Well, for heaven sakes, what mother doesn’t go to her 5-year-old’s birthday party? So she's obviously sick.

  • Lisa:

    So really the lupus patients that haven’t been able to afford to go to the doctor, they could use all of these avenues?

  • Winnie:

    Absolutely! Lisa, that’s a very good point.

  • Christine:

    And as far as getting a representative or getting attorney, Winnie, I cannot afford these things, and I am scared! I am scared, and I do not have money. How do I do this?

  • Winnie:

    That is an excellent question, and most people who apply for disability don’t have the money, and Social Security has structured it so that the attorney is not entitled to any attorney’s fees. Unless No. 1: There is a contract. No. 2: Social Security approves it. No. 3: The claim is won. And then the fees are limited to 25% of the past due benefits, with a statutory cap. Right now that statutory cap sits at $6,000.

  • Christine:

    So the most that they can get is 6,000?

  • Winnie:

    That’s right. I mean, how else could a person who is disabled pay for an attorney? This is a specialty; you need to find an attorney who knows Social Security disability.

    There is a national organization, NOSSCR, that’s National Organization of Social Security Claimants Representatives. They have a referral service nationwide, and the number is 1-800-431-2804.

    And it would be helpful if they understand lupus, because lupus is not just like any other claim.

  • Lisa:

    It is very complicated.

  • Winnie:

    It is complicated.

  • Christine:

    So it’s just a long process that we need to prepare ourselves for.

  • Winnie:

    You have to be warrior women.

  • Christine:

    Warrior women! I like that.

  • Lisa:

    That’s a good one. Thank you.

  • Winnie:

    Thank you.

Guest Expert What is a guest expert?

Christine Miserandino is a lupus advocate who writes, blogs, and speaks about living with lupus.

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