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Applying for Disability

Have you applied for disability? What was the process like for you?

We have information on the ins and outs of applying for disability in our resources section: https://multiplesclerosis.net/resources-ssdi

  1. RRR. That’s not “Reading, ‘riting and ‘rithmetic”. If you have MS (or any disease/accident injury that may cause you to apply for disability) I believe the way to a positive outcome is RRR - RESEARCH, RESEARCH, RESEARCH! I read everything I could find on every MS Site I could find. Then I read everything I could find on non-MS Sites that had anything to do with MS. I continued reading: first person articles about why a person failed in getting Disability or fought to eventually get it, articles written by doctors angered by their patients getting denied, articles written by past and present employees of different disability systems on why applicants are denied. One even went so far as to say (not exact words) that they had to have a way to get through the stack of applications therefore it often came down to the first mistake they found. Zip Code left off. They’d use the “Claim Denied” stamp. Sad fact is that the majority of denied applicants do not resubmit their claim. If your initial application is accepted you will be informed that they will now investigate it. You will need to sign forms allowing them to contact your doctors, etc. It will take time to gather everything. Doctors forget to follow through. Mail gets lost. Disability employees are overworked. A year, maybe two down the road you may, or may not get a positive response. So I cannot stress enough how very important it is to research, in general and research more specifically to your specific case. If you haven’t already, don’t delay in getting a copy of EVERY VISIT to EVERY DOCTOR you’ve ever seen wherein you’ve shared any symptom you’ve had that the doctor might have written a note in your file about the possibility of MS. I had some odd stuff happen

    1. Dog-gone-it… I had some odd stuff happening. My GP sent me to a neurologist but symptoms had disappeared. No tests done. HOWEVER, the neurologist’s report to my GP stated that should symptoms return I should be tested for MS. Four years later. More symptoms. GP referral to second neurologist. Symptoms disappear but he writes letter to GP echoing first neurologist. At no time did my GP or either neurologist mention MS to me yet all three had notes in my chart that indicated that I should be tested for it. Another four years, another set of symptoms and another neurologist; one who scheduled a MRI and confirmed that I had Multiple Sclerosis. After doing my RRR I postponed applying for disability until I, MYSELF, contacted every doctor I’d ever seen and asked for complete copies of my records. Twenty-four years of records. My GP’s office staff started at the beginning of my file and pulled every page that had the words neurologist, MS or demyelination. A referring doctor also has copies of lab reports, MRI’s, other testing, physical therapy, and names of each facility and physician, therapist or technician you’ve seen. When I was confident that I had everything - then I completed the application. Before submitting it I had two non-related, unemotional, unbiased people read through the application. I sent three copies of everything (in one large envelope) by certified, signature required, receipt return mail on a Monday morning. Within three weeks I received a letter that my case was accepted and being reviewed. Three weeks later I received approval. Sure RRR took time. But it made me ready to do the letters, follow up phone calls stressing my situation, completing the application, compiling the packets and finally mailing them. Receiving approval in six weeks was worth every second of learning through RRR.

      1. You amaze me, ! The amount of work might seem overwhelming to people reading this, but I would imagine it is far less overwhelming than getting denied over and over and over again. This is fantastic advice for anyone applying for disability. Thank you for sharing your experience. Best of all wishes! - Lori (Team Member)

    2. I just saw this post. I applied for S.S.D.I. many years ago, and got through on the first attempt. It was very hard to to get it even then. Here's a paste from my file with tips, and a recent video from an attorney who specializes in these cases which is terrific.

      Long-term Disability Benefits—What to know and do.
      (Excerpt from upcoming 2nd Edition of Managing MS, 10/2021)

      When I’m asked, “What should I do if I’m thinking about applying for long-term disability benefits?” these are my suggestions:

      • Document everything—symptoms, flare-ups, medications/treatments taken, all doctors/other professional help visits, etc.— and be specific (when, what, frequency, duration, why, results/non-results, side effects…).

      • Schedule at least two visits to your neurologist/year. Consider seeing a professional therapist for depression and other emotional problems you may be experiencing; consult with them about prescriptions for an antidepressant, anxiety, or sleep.

      • Make sure you have a good, supportive neurologist—my neurologist knew exactly what to write and explain specifically on required paperwork to get me approved.

      • When completing disability documents, include the following points.

       In addition to the gait, vision, bladder/bowel, sleep, fatigue and emotional problems, you need to be specific with pain, coordination, weakness and balance problems.
       Show that you are unable to stand or sit more than an hour or two at a time; and it’s necessary to lie down at least every two hours.
       Explain that not only are you unable to do your current job, but any job. (Like selling movie tickets!)
       Detail how quickly you become incapacitated and how nauseated and sleepy you get from medication/treatments you are on.

      • Once you get on disability benefits, stay on them. The unpredictability of a MS flare-up and the extent and duration of its impact can happen overnight.

      Note: To obtain information about Social Security Disability, you can call your local social security office, or go online at www.socialsecurity.gov.

      Video - Social Security Disability Law Updates for the MS Community
      https://bit.ly/378RjMI MS News and Views

      1. , this information is great and could be invaluable to other community members looking to apply for SSDI! Thank you so much for sharing! Best, Erin, MultipleSclerosis.net Team Member.

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