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Speak Out for Migraine & Social Security Disability Today

Speak Out for Migraine & Social Security Disability Today

Many of you know first hand about the challenging process of applying for Social Security Disability benefits for Migraine. Improving this situation has been an active advocacy focus of the Alliance for Headache Disorders Advocacy since last year, and now there’s something tangible you can do to speak out for reform.

At the 2013 Alliance for Headache Disorders Advocacy (AHDA) Headache on the Hill event, we asked for support from members of Congress to encourage the Social Security Administration (SSA) to add a listing to the Blue Book for Migraine. (See Headache on the Hill 2013: Migraine is Prevalent, Costly, Neglected). Some members of Congress, including the highly influential senator from Montana, Max Bacchus, were supportive of our concern and wrote letters to the Social Security Commissioner in support of this request.

Unfortunately, the SSA has refused to do so despite the obvious and extreme need. And provided no explanation for this decision.

By way of background, applicants for Social Security Disability who meet the criteria for a condition listed in the Blue Book are automatically granted benefits. All of the well-known obstacles currently faced by profoundly disabled individuals with Migraine could be bypassed if we were to receive a listing for Migraine in the Blue Book.

As it currently stands, when they receive an application for benefits due to Migraine, SSA Disability Examiners try to apply the criteria for a similar condition that is listed in the Blue Book to make a determination on whether to award benefits for Migraine for a given applicant.

While it’s certainly true there are similarities between conditions like Migraine and non-convulsive epilepsy, applying the characteristics of a different condition to Migraine creates major roadblocks that quite often lead to a lengthy, burdensome and expensive appeals process. For those who are unable to maintain employment due to living with Chronic Migraine, a better option is warranted and long overdue.

Here’s the silver lining: For the first time since 1985 (29 years), the SSA is currently revising neurological disorders listed in the Blue Book. This is the perfect opportunity to raise our voices as one and insist they make this highly necessary change.

Please take action by submitting a comment to the SSA at this link: http://1.usa.gov/1gQS89a.

You must take action by Monday, April 28, 2014, for your comments to be taken into consideration in decision making about revision of the neurological disorders portion of the Blue Book. Please feel free to adapt what I’ve written here if it helps you compose your comment to the SSA.

Don’t forget to share this blog post with others in your life who care about the status of things for Migraine patients so they can make comments, too.

This is a huge opportunity for us to make things less burdensome on ourselves and other Migraine patients who are legitimately disabled by the condition such that they’re unable to hold employment. Please don’t miss this chance to make your voice heard on such an important issue.

Any questions about what all this means? Please share them in the comments and I’ll do my best to answer them.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Kallie
    5 years ago

    I saw today that they’ve re-opened the comment window for an additional 30 days. Do you have any insight into why they may have done this? I assume it’s good news for us…?

  • KarenE
    5 years ago

    I have been on Social Security disability since 1999. When I first left my job, I was on long-term disability from my employer, and I remained on that for 18 months before applying for Social Security disability. During the 18 months, and prior to going on long-term disability, I was seeing neurologists and specialists, and by the time I applied for Social Security disability, there was a significant amount of documentation about my situation. I received approval for Social Security disability just three weeks after applying.

    Until reading your article, I had no idea that others with migraine were having difficulty receiving Social Security disability. I will definitely go to the linked site and comment, and will share the link with family and friends as well.

    Thank you for making me aware of this important issue.

  • Brian in TN
    5 years ago

    Here are my comments I posted in about 10 min at http://1.usa.gov/1gQS89a:

    As a disabled veteran I feel it incumbent on me to comment on the current state of disability recognition by various federal agencies concerning migraines, especially for chronic migraine sufferers like myself. Since 1996 I have awoken virtually every day with a headache which, while in the Navy made it impossible for me to do my job especially while going to sea on a submarine. By the grace of God I have been able to maintain gainful employment since I left the Navy but my ongoing battle has brought me into contact with many who are simply unable to provide useful services due to their debilitating symptoms of migraine disease. While I was reminded daily before I was discharged how easy it is to “fake” migraines, I know enough now to know how much some people suffer with this curse. That the VA provides disability care for veterans like myself with migraines is admirable, it is patently unfair not to recognize the same condition amongst the general population. Since applicants for Social Security Disability who meet the criteria for a condition listed in the Blue Book are automatically granted benefits. All of the well-known obstacles currently faced by profoundly disabled individuals with Migraine could be bypassed if we were to receive a listing for Migraine in the Blue Book. As it currently stands, when they receive an application for benefits due to Migraine, SSA Disability Examiners try to apply the criteria for a similar condition that is listed in the Blue Book to make a determination on whether to award benefits for Migraine for a given applicant. This is not only unfair to patients seeking disability compensation but also burdensome to examiners without any obvious compelling interest in maintaining this state of affairs. I urge you to include Migraine Disease in the Blue Book to rectify this situation.

    Please feel free to use any portion of it for SSA comments or to repost anywhere you choose.

  • waynealves
    5 years ago

    I have been dealing with headaches/chronic migraines for about 19 years (1995 to present). It has taken me since 2006 until 2013 to get the Social Security Disability benefits that I so deserved. I applied and appealed so many times and it finally took me until last year (2013) to get my benefits. I would like to suggest to those of you out there that are still fighting with the SSA to get your benefits to find a lawyer that deals with Social Security Disability because that is what it is going to take to get those benefits. I would also suggest that you gather up all doctor documents stating that you have been diagnosed with chronic headaches or chronic migraines because you will need a doctors diagnoses to get those benefits. Trust me, it is not a fun road to deal with the SSA. I want to wish you all good luck in your grueling adventure in obtaining those well deserved benefits. Good luck and keep up the faith and the fight.

  • BethBlue
    5 years ago

    You make reference to “what I’ve written here” (paragraph that begins “you must take action”). Where is that information? I’m presuming that you’re referencing information that helps us fill out the forms — correct?

  • kimberletto
    5 years ago

    Thank you for the information. I will be asking family and friends to consider submitting comments to SSA, and I’ll boost the signal on social media as well. Having migraine included in the blue book would be invaluable, primarily in easing the way for those applying for SSD, but also in having migraine recognized as a real disorder and not just a bad headache! I hope everyone here will take just a moment to contact SSA in support of this change.

  • Katie M. Golden moderator
    5 years ago

    Diana- thanks for putting this info out there. I just filed for SSDI and am waiting for the response. I am prepared to appeal, but hope that my loads of information will work the first time.

    It’s a full-time job taking care of yourself. Dealing with the paperwork to fight for benefits is another full-time job. I will make sure that my family and friends participate as well.

    Senator Bacchus has now retired, but I’m sure Senator McCain would also be supportive of the cause since his wife is very public with her Migraine disease.
    -Katie

  • Stacey Dee
    5 years ago

    I had no idea migraines were not accepted as a disability as my condition was granted as of 2001. Yes I was denied my first application but was accepted upon appeal. I filed myself without an attorney. Now I’m not sure how it got though, but I hope for all those who need disability can get it. I have found though it is best to continue work even limited work because the stress of the limited income can be just as conducive to the migraines as a full time career.

  • lokahiheidi
    5 years ago

    Hi there,
    I’m trying to leave a comment at the link you provided for SSA. However there is a problem with loading it. It may be just my computer, but maybe others are having problems loading it too for comment.

  • Tammy
    5 years ago

    This is long over due and needs to be added to the list. A migraine is not just a headache and affects everything in the body while under attack. Although I got approved for SSDI I know others are not. I’ve had a long history and kept well documented records of everything migraine related “only cause that’s how I am”. I didn’t know I was going to need it one day while applying for SSDI.

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