My Uphill Battle with the SSA

My battle with the Social Security Administration began February 28, 2013, the last day I was physically capable of working in my classroom.  Although I had qualified for long-term disability through my employer’s insurance company (thanks to the thorough and careful planning of my union president and I), the LTD carrier immediately wanted me to begin applying for Social Security Disability.   After 2 1/2 years of the application process and having been denied to the point where I am now waiting for a hearing to be scheduled with a federal judge, I have learned some things along the way.

Due to the incredible amount of stress I’ve incurred as a result, my disability symptoms have undoubtedly gotten worse.  No one should have to jump through all these hoops, and if I can help at least one person with what I’ve learned through my experience, then at least a portion of the struggle will be worth it.  In homage to David Letterman, here are the top 10 things you should always do when applying for SSD.  In fact, many of them can apply to life in general, whether you have a disability or not.

10.  Ask yourself, “Is it possible that the doctor assessing my SSD application is clueless about what my disability is?”  After my initial claim, and then the following appeal, I learned repeatedly that neither of the people assessing me knew what cervical dystonia is.  In fact, when my appeal finally was denied and sent to me, it said I could still work as a teacher because “You can use your arms and hands.”  Need I say more?

9.  Don’t automatically trust a lawyer.  I was connected to one immediately through my LTD provider, a company they undoubtedly have a contract with. What did I know?  At that point, I was just trying to make sure I still had enough income to survive, not to mention dealing with incredible chronic pain. So I went with it.  However, I soon learned the Social Security Advocates for the Disabled did everything but advocate on my behalf.  First, my original claim was denied.  And then my assigned attorney told me it was going to take 3-4 months to hear back from SSD about my appeal. As the months dragged on, there was never any follow-up by my “advocate”.  My appeal was filed during the middle of March in 2014, and I wasn’t notified that I’d been denied once again until November.  Guess how I found out!  Remember the letter explaining my denial that I wrote about in number 10?  I assumed my attorney would call me, but no.  I was the one who called them to find out why they hadn’t gotten in touch with me.  “We can’t ever know when the government is going to do its job.”  My reply?  “Maybe not, but you can call them on my behalf until they are so sick of hearing from you that they finally pick my file up off the desk.  And call me to keep me informed.  It’s my life you are supposed to be advocating for!”  You are your best advocate so be aware of those who aren’t on your side.

8.  Find your own attorney.  When I discovered this East Coast law firm didn’t have my best interests at heart, I called my union representative.  She gave me the phone number of a Minneapolis firm whose main focus was helping clients with the Social Security Disability process, especially those who have been denied.  If you’re wondering how I can afford this, here’s what I know.  They don’t get any money until I am granted my SSD benefits.  At that point, 25% of the back earnings go directly to them, in addition to my long-term disability company getting reimbursed.  This is the same process that would’ve been used for paying the Social Security Advocates for the Disabled, if only they had chosen to advocate for me.

7.  Ask lots of questions along the way!  I can’t say it enough.  You really have to be the best advocate for yourself.  If you don’t feel well enough to be able to do this, ask a family member or friend who is.  It’s essential that you don’t assume anything.  You know what they say about people who assume, right?  Only, you’re the one who pays for it.  In this case, literally!

6.  If you are working a union job, continue to pay the reduced membership fees each year if you are given that option so you can have access to a legal team (with Education Minnesota, I do).  In my case, this has been so essential.  I have felt like an experiment in my school district because they’ve never had anyone diagnosed with such a rare neurological movement disorder before.  This means that my symptoms were worsened every time I involuntarily became the ball in their pinball machine:  getting knocked around all over the machine, side to side, up and down.  Human Resources and the health benefits company didn’t know what to do with themselves.  One of them told me one thing, while the other entity told me another.  Then they’d use a paragraph out of the contract to deny my benefits, only to use that same language a month later to say I was guaranteed coverage.  I finally just left everything in the hands of my union rep., and she would contact me when an issue was resolved.  Less stress is the way to go, with someone you trust, that is!

5.  Make copies or scan all of the paper work you complete.  This will save you tons of time and energy when you get the next five to ten sets of forms that will basically ask you the same thing.  I sure wish I had done this earlier!

4.  Keep all of your correspondences concerning your disability and income in a paper file or a folder on your computer.  It really helps, especially when there is a discrepancy between what you were first told and what you are told at a later time.  It can also help you when filling out information you don’t know the answers to.  For example, I had to go in for a day long Functional Capacity Evaluation by an independent physical therapist, as “requested” by my LTD company.  Since my physical rehabilitation doctor doesn’t do all of those tests (it was seven hours of torture; really, it only took an hour before the tears started to flow due to the high pain levels this evaluation induced), we both use her findings to support my claim for disability.  It’s simple to be organized regarding your health, so do it!

3.  When you are sent anything from the Social Security Administration, call your attorneys first to find out if you should fill the papers out at all.  I just received a set of forms in the mail that said “This information is necessary so we can determine if we can rule in your favor without needing to set up a hearing.”  Having filled out the forms because the law office was already closed for the weekend, I called on Monday.  “Don’t fill those out,” my advocate said.  “I don’t know why they still send out those letters because they never make decisions without a hearing anymore.”  Another zinger!

2.  Do some research to find out how the system works for you.  For a long time, I was worried that being approved for Social Security Disability might be detrimental to my income, as small as it is.  I didn’t realize I was still going to get the same amount of money as I am now; my decreased income currently coming from my LTD carrier and two of my retirement associations.  It just means that the long-term disability insurance company will have to supplement anything SSD doesn’t cover.  While I have heard horror stories about people suddenly getting denied their LTD after they are approved for Social Security, it helps me to know that I have the attorneys at Education Minnesota on my side if this issue would come up.  It’s always good to have a back-up plan so that someone else is watching out for you too.

1.  Contact your legislator!  A friend told me a while back that she encourages her clients applying for SSD to contact their legislators.  Since I had so many questions and concerns about my finances and whether or not my health care benefits would be affected, I put it off.  However, after hearing someone from my dystonia support group say that Senator Franken had written a letter to the Social Security Administration with the purpose of asking them to add “dystonia” to the list of automatically accepted disorders, I finally went into action mode.  Last week, I called his Minnesota office to find out what they recommended.  The young woman on the other end of the phone took down my name, number, and a summary of my story.  “The person who handles these issues will get back to you so we can help expedite the process.”  And she did!  It doesn’t hurt to ask, especially if you know that person in government is already on your side.

MY HOPES:  It’s so easy to get discouraged with this process and want to give up.  When my attorney filed for a hearing with a judge last December, she told me it would be between twelve and fourteen months before we would be seated before the judge.  Now the timeframe has been extended to eighteen months or more, while at the same time, I’m still having to prove that I still can’t work to my long-term disability carrier and my retirement associations.  It is exhausting and creates a mountain of stress, which isn’t good for anyone.

What it boils down to is this.  You can’t give up!  This is your life, and although it looks different than the way you envisioned, you still have to pay your bills to survive.  This is especially difficult when you’re single like me because I have no one else to rely on.  But unless you’re married to someone bringing home a six digit salary, this is bound to affect most couples too.

I also hope that you educate others about your process, what has worked for you and what hasn’t.  And if you aren’t personally going through this, you can make connections by sharing stories about someone you know who has had to jump through these hoops (of course, you want to maintain the confidentiality of your friend unless they’ve given you permission to share his/her name with the world).  Three years ago, I had no idea what SSD stood for, nor did I realize how complicated the entire process was.  It’s enough to inspire panic attacks, anxiety and depression, in addition to anything else that is preventing you from doing your job.  We have to know we have support, because I think many people assume those of us on disability are on some kind of vacation.  It’s actually a full-time job, if not more.  And one of those full-time jobs is continuing to fight for the help you desperately need.  If I could have even one week of “vacation time” to be symptom free and not have to work at managing my pain and prove it’s debilitating, I would be ecstatic.  In lieu of those wishes not being in my future, I am left with making my life as good as it can possibly be on any given day.  I have to!  For me, that’s my only alternative.


5 thoughts on “My Uphill Battle with the SSA

  1. Thanks for taking the time and care to share your story. Unrelenting persistence has worked for several friends to get SSD and you have shared it well.


  2. Excellent blog, as usual. Very informative and educational. I love how that you say it as it is, how concise and purposeful you are in everything that you share with us. You are such an inspiring story of courage and triumph. Write on!!


  3. Hi Michelle;

    Great advice. I know what you’re going through. I have been unable to work since January of 2012 due to my Cervical Dystonia. I jumped through many of the same hoops and you’re right — going through a SSD claim is as stressful (if not more so) than a full-time job.

    I filed myself the first two times, since I heard that was commonplace (and also common to be denied), before getting an attorney. What I wasn’t prepared for was going before the judge last August and then 8 months later learning his decision — that I was being denied for disability! I wish I had researched my disability lawyer a little more before signing up with his firm. He pulled my medical records beforehand, but don’t think he went back far enough into my history to see the big picture and how debilitating this illness is. And then the only time I met him was for 15 minutes prior to my hearing. How can anyone prepare for a hearing in just 15 minutes? He didn’t even know how to code my petition since there is no formal listing for dystonia on the disability list. I’m sure he did his best, but I felt like a very small number in a very large list of clients. Fortunately the attorney is going to appeal the judge’s decision based on the medical evidence (and the long email I wrote him) but I am skeptical at this point as to my chances of getting the judge to reverse his decision.

    Sorry if I sound negative, just very disappointed in the whole system at this point. Hopefully you have a good attorney and I can only suggest that you try to meet with them (if you haven’t already) more than just a few minutes prior to your case. Fortunately I’ve had a family member to live with this whole time otherwise I don’t know how I’d support myself.

    The main reason I’m writing is I was wondering if you think it would do any good at this point to contact a senator like you did? I also live in Minnesota so any information you have would be appreciated.


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