Skip to main content

My niece was diagnosed with Guillain–Barré syndrome about 2 years ago. Unfortunately for her, the diagnosis wasn't made until she had suffered significant and, it appears, permanent nerve damage. She continues to have significant pain and loss of dexterity. Needless to say, she hasn't been able to work since her diagnosis.

After a long process, she has a hearing on March 4 with the Social Security Administration for a disability determination. This is her third hearing. I thought she had found good representation to make sure all of her paperwork is properly filed, etc., but after a conversation with her this evening, I'm not so sure that is the case. The hearing is only scheduled because my niece contacted her Congressional representative for help (Betty McCollum, Minnesota's 4th District rep). And, as yet, the attorney hasn't filed the proper paperwork...

So I'll be contacting her attorney tomorrow morning in an effort to move things along. I'd really appreciate any feedback on the questions I should be asking along with input about the process and what needs to happen to make sure that her appeal is successful. My niece is approaching the end of her resources so she can't afford any more delays.

Your Email has been sent.
You must add at least one tag to this diary before publishing it.

Add keywords that describe this diary. Separate multiple keywords with commas.
Tagging tips - Search For Tags - Browse For Tags


More Tagging tips:

A tag is a way to search for this diary. If someone is searching for "Barack Obama," is this a diary they'd be trying to find?

Use a person's full name, without any title. Senator Obama may become President Obama, and Michelle Obama might run for office.

If your diary covers an election or elected official, use election tags, which are generally the state abbreviation followed by the office. CA-01 is the first district House seat. CA-Sen covers both senate races. NY-GOV covers the New York governor's race.

Tags do not compound: that is, "education reform" is a completely different tag from "education". A tag like "reform" alone is probably not meaningful.

Consider if one or more of these tags fits your diary: Civil Rights, Community, Congress, Culture, Economy, Education, Elections, Energy, Environment, Health Care, International, Labor, Law, Media, Meta, National Security, Science, Transportation, or White House. If your diary is specific to a state, consider adding the state (California, Texas, etc). Keep in mind, though, that there are many wonderful and important diaries that don't fit in any of these tags. Don't worry if yours doesn't.

You can add a private note to this diary when hotlisting it:
Are you sure you want to remove this diary from your hotlist?
Are you sure you want to remove your recommendation? You can only recommend a diary once, so you will not be able to re-recommend it afterwards.
Rescue this diary, and add a note:
Are you sure you want to remove this diary from Rescue?
Choose where to republish this diary. The diary will be added to the queue for that group. Publish it from the queue to make it appear.

You must be a member of a group to use this feature.

Add a quick update to your diary without changing the diary itself:
Are you sure you want to remove this diary?
(The diary will be removed from the site and returned to your drafts for further editing.)
(The diary will be removed.)
Are you sure you want to save these changes to the published diary?

Comment Preferences

  •  Thanks for your guidance (26+ / 0-)

    It is much appreciated.

    “Parties do not lead revolutions. They follow them. And then only when forced to.” Joe Bageant

    by tgypsy on Tue Jan 29, 2013 at 09:29:56 PM PST

    •  My experience with my husband (13+ / 0-)

      He has insulin dependent Diabetes and numerous medical conditions and compromises. He applied in Summer 2008 and was denied. His condition worsened, considerably and he reapplied online in January 2012. We had no word from SSD, until we noticed a really large deposit in out checking account. They declared him eligible and gave him retroactive benefits to Dec. 2008 (His first foot fracture).

      I have excellent health insurance (Kaiser) and he had used a lot of services, thus had an extensive record, and specialists who knew his history. I think that is what did it for him. We were skeptical applying the second time, and shocked when they granted him disability, especially since he had voluntarily quit working in 2008, and hadn't since then.

      Any and all medical records, meds, and a clear story on what she was able to do before her illness contrasted with what she can do now. I'd suggest contacting an advocacy group for GB patients, or similar illnesses and ask how you can better her chances to get SSD. Does her clinic have a medical social worker who can assist her? They can't argue against data and facts.

      •  Thanks for the info (12+ / 0-)

        Did you do all of the application process yourselves? I'm skeptical that this attorney is doing well by her needs. I don't know if there is a medical social worker at her clinic - I'll ask her. Did you ask your specialists to write something, or did you use only medical records?

        “Parties do not lead revolutions. They follow them. And then only when forced to.” Joe Bageant

        by tgypsy on Tue Jan 29, 2013 at 10:06:11 PM PST

        [ Parent ]

      •  I think you've put your finger on a real key, (12+ / 0-)

        sallym. Good records. Lots of them.

        My SSDI claim was approved in 119 days, from application to approval letter. I was pretty gibbled up, but what made the case a slam dunk was that I had more than fifteen years worth of medical records from the VA, which had administered every kind of test from x-rays, to MRIs, Neural Conduction Studies, etc., etc. over a period of years and transmitted them electronically(no stacks of paper to sort through) in a form familiar to and easily comprehensible by the SS examiner.

        What was ironic was that at the time I applied we still had yet to determine what my real complaint was. As busted up as I was I was only quitting construction work, at age 61, because "I just couldn't do it anymore." I was becoming so fatigued that I literally had to lay down on the job. Regularly.

        A couple of years later, after two heart attacks in one week, they finally diagnosed the cause of my fatigue as Ischemic Heart disease from Agent Orange.

        “Perhaps the most 'spiritual' thing any of us can do is simply to look through our own eyes, see with eyes of wholeness, and act with integrity and kindness.” Jon Kabat-Zinn

        by DaNang65 on Tue Jan 29, 2013 at 10:32:23 PM PST

        [ Parent ]

        •  Thanks for the advice (6+ / 0-)

          I'm not sure of the state of her medical records but I'm sure that her docs have everything she'll need even if she hasn't gathered them herself.

          Sorry to hear about your illness. Agent Orange is nasty stuff.

          “Parties do not lead revolutions. They follow them. And then only when forced to.” Joe Bageant

          by tgypsy on Tue Jan 29, 2013 at 10:46:53 PM PST

          [ Parent ]

          •  Sorry to be so long getting back to you. (2+ / 0-)
            Recommended by:
            tgypsy, Neuroptimalian

            I hate to say it, but what you just wrote

            I'm not sure of the state of her medical records but I'm sure that her docs have everything she'll need even if she hasn't gathered them herself.
            is, imho, at the heart of the legendary long delays and repetitive denials of worthy claims for SSDI and VA benefits: relying on someone else to be sure she has everything she needs.

            First, and foremost, the doctor(s) don't have any particular interest in whether or not she has "everything she'll need." They don't get paid a penny more whether she does or doesn't. Cynical? No, experienced. The doc doesn't really know what Social Security requires, nor, in most cases, does she care. The doc doesn't take care of that kind of paperwork, they shuffle it off a newly hired office assistant who's lucky he found his way to work this morning.

            Maybe she sends it to the right address, maybe not. It all pays the same, and hey, nobody's perfect. Maybe it's the stuff SS requested, but who knows, if I knew that much about what Social Security needs I'd be working for Social Security in a good paying government job with benefits and not in this damned minimum wage no benefits doctor's office.

            And on and on. The point is that no one is invested in the outcome of your neice's claim like your neice is. She can rely on the kindness (and competence) of strangers if she wants to, but she cannot then be heard to complain about the result.

            Sorry, that's what life teaches me, and I work with benefit claims and the system regularly.

            “Perhaps the most 'spiritual' thing any of us can do is simply to look through our own eyes, see with eyes of wholeness, and act with integrity and kindness.” Jon Kabat-Zinn

            by DaNang65 on Wed Jan 30, 2013 at 12:22:44 PM PST

            [ Parent ]

            •  I agree - my comment was meant to say that I (1+ / 0-)
              Recommended by:

              think the records exist. We are implementing a plan to make sure that her file is complete ~2 weeks before her hearing. It'll be challenging but we just have to get it done.

              “Parties do not lead revolutions. They follow them. And then only when forced to.” Joe Bageant

              by tgypsy on Wed Jan 30, 2013 at 03:53:58 PM PST

              [ Parent ]

            •  Any advice on what to request a doctor do ... (2+ / 0-)
              Recommended by:
              DaNang65, tgypsy

              to flesh out a patient's file?  The minimum, I'm sure includes diagnoses, test results and medication history, but no report I've seen includes any discussion of "quality of life" issues (or the lack thereof), actual physical limitations, etc., which I'm sure would help supplement claims.  Are there other things a doctor could include that would help?  (If you know.)

              Thanks for any guidance you might be able to provide.

              (As a person bed-ridden by spinal arthritis yet denied twice, I'm at a loss as to what else to do.)

              "Two things are infinite: the universe and human stupidity, and I am not sure about the universe." -- Albert Einstein

              by Neuroptimalian on Wed Jan 30, 2013 at 08:49:49 PM PST

              [ Parent ]

              •  Because I'm not a lawyer with a specialty (1+ / 0-)
                Recommended by:

                practice in Social Security law or a trained Social Security  claims examiner I'm not really the one to rely on for that kind of information.

                Anyone who isn't one of those two things and tries to tell you that they have the answers is more likely than not blowing smoke. Anyone who is qualified charges dearly for their hard earned expertise.

                Fortunately that doesn't mean all hope is lost, however. If you, or someone you trust with your best interests, has the basic education and skills to wade through the online publication titled Disability Evaluation Under Social Security, aka the "Blue Book, you will be able to find Social Security's exact criteria, the ones they will be evaluating your claim on, for your specific conditions.

                For example, under Adult listings (Part A), 1.00 Musculoskelatal System, Section 1.04 Disorders of the Spine we find

                1.04 Disorders of the spine (e.g., herniated nucleus pulposus, spinal arachnoiditis, spinal stenosis, osteoarthritis, degenerative disc disease, facet arthritis, vertebral fracture), resulting in compromise of a nerve root (including the cauda equina) or the spinal cord. With:

                A. Evidence of nerve root compression characterized by neuro-anatomic distribution of pain, limitation of motion of the spine, motor loss (atrophy with associated muscle weakness or muscle weakness) accompanied by sensory or reflex loss and, if there is involvement of the lower back, positive straight-leg raising test (sitting and supine);


                B. Spinal arachnoiditis, confirmed by an operative note or pathology report of tissue biopsy, or by appropriate medically acceptable imaging, manifested by severe burning or painful dysesthesia, resulting in the need for changes in position or posture more than once every 2 hours;


                C. Lumbar spinal stenosis resulting in pseudoclaudication, established by findings on appropriate medically acceptable imaging, manifested by chronic nonradicular pain and weakness, and resulting in inability to ambulate effectively, as defined in 1.00B2b.

                What you need to do then, is satisfy yourself that the medical evidence you've submitted establishes the necessary criteria, above. If you have any doubt you might print out the Blue Book criteria and take it to your doctor for his review. She may or may not already know SS's requirements, but with the criteria squarely in front of her she can render a medical opinion whether or not what you've amassed is sufficient to establish what SS requires.

                Similarly with any other medical issues you may have.

                If you can get that opinion in writing you're probably in like Flynn. Since M.D.s have a license on the line they rarely will commit anything to writing unless it's a sure thing. If she tells you need this or that or the other thing, like an MRI, or an x-ray, or whatever, you probably should ask to have your case rescheduled until you can provide the proof you need.

                Most of the time spent appealing denials of SSDI and VA disability cases isn't because the claimaint isn't disabled, it's because the claimant failed to provide the necessary proof the first or even second time around.

                Should you go to a hearing, please pay careful attention to whatever proofs the hearing officer wants to see. Use your judgement. If it seems like you're not getting the red carpet to benefits stop and ask the hearing officer what further documents you need, and ask for a "continuance" until you can gather them. If it seems like a lot of time and work, consider the alternative - that's why all those lawyers are advertising on teevee, so they can take one third or more of your money when you finally do prevail.

                And, Good Luck!

                “Perhaps the most 'spiritual' thing any of us can do is simply to look through our own eyes, see with eyes of wholeness, and act with integrity and kindness.” Jon Kabat-Zinn

                by DaNang65 on Wed Jan 30, 2013 at 10:15:13 PM PST

                [ Parent ]

                •  THANK YOU! (2+ / 0-)
                  Recommended by:
                  DaNang65, tgypsy

                  I actually DO have the skills and ability to analyze your reference to take advantage of its guidance, and I TRULY appreciate the link and additional advice.  You're a life-saver and I can't thank you enough!  I'm betting others who happen upon this thread will be thankful as well.

                  "Two things are infinite: the universe and human stupidity, and I am not sure about the universe." -- Albert Einstein

                  by Neuroptimalian on Wed Jan 30, 2013 at 11:10:20 PM PST

                  [ Parent ]

  •  I've always heard it was a fight (12+ / 0-)

    to get benefits. The fact that it's such a long and grueling process for people who are already too ill to work is just a travesty.

    I don't have any words of wisdom for you but I remembered seeing a diary the other day that might give you some insight.
    Monday Night Cancer Club:Social Security Disability. A Former Disability Examiner's Thoughts It was written by DarkHawl98 Perhaps if you sent a kosmail they might be willing to give you some pointers on navigating the system.

    Good luck to you both.

    "Compassion is the radicalism of our time." ~ Tenzin Gyatso, 14th Dalai Lama -7.88, -6.21

    by Siri on Tue Jan 29, 2013 at 10:03:44 PM PST

  •  (((((((((((((((tgypsy, niece and family))))))))))) (9+ / 0-)

    I'm so sorry your niece is having such a tough time with the process; it is indeed grueling. I second Siri's suggestion about talking with DarkHawk98. I am sending up prayers, if that's okay, that your niece is successful.


    Torture is ALWAYS wrong, no matter who is inflicting it on whom.

    by Chacounne on Tue Jan 29, 2013 at 10:09:40 PM PST

  •  The most important thing is for your niece (5+ / 0-)

    to go to the hearing personally if at all possible.  Obviously if she's hospitalized she can't go, but in that case some family member should go, if only to observe.  

    The next most important thing is thorough and complete medical records, as mentioned by several other people.  

    Renewable energy brings national global security.     

    by Calamity Jean on Wed Jan 30, 2013 at 12:40:37 AM PST

  •  haven't helped with a case recently (5+ / 0-)

    Kosability threads likely contain some current benefit experts.
    Nurse Kelley, if available, could be a good guide.
    3rd Hearing?
    Administrative Law Judge hearing?
    Who has read SS's case file?
    Crucial to know what's in there
    And have current/recent summaries to document troubles.
    I used to begin with a release signed by the applicant so I was temporarily the representative and permitted access to the file.
    I used to copy everything in it and read it
    And then get more signed releases to send to where treatments and hospitalizations occurred. I'd call to find who the medical records person best to contact was, then write and then call again 2 weeks. SS oft made one off attempts and didn't follow up.
    Then I would Commumity Legal Services (sometimes it's an attorney + sometimes a paralegal. Or private attorney. They only usually get paid from retroactive money; which begins from the Protective Filing Date of when the case began.
    You should also be able to contact the people at the hearing office for guidance.
    Understand all this, I hope?

    clime parches on. terms: ocean rise, weather re-patterning, storm pathology, drout-famine, acceptance of nature.

    by renzo capetti on Wed Jan 30, 2013 at 01:56:30 AM PST

  •  Sorry to hear about your niece (2+ / 0-)
    Recommended by:
    renzo capetti, tgypsy

    If I knew anything about this area I'd be happy to help out but unfortunately I don't.  I hope everything goes well.

    "To see both sides of a quarrel, is to judge with hate or alarm" - Richard Thompson

    by matching mole on Wed Jan 30, 2013 at 05:07:41 AM PST

  •  Have you tried a Legal Aid office? (0+ / 0-)

    They have 0ver 95% success rates and may even get the case settled without a hearing.  

Subscribe or Donate to support Daily Kos.

Click here for the mobile view of the site