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Please Sign the HD Social Security Petition!

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  • Jean E. Miller
    Dear Friends & Family I would like your help in signing a petition to get the Social Security Administration [SSA] to update their Disability Evaluation Under
    Message 1 of 1 , Feb 1, 2008
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      Dear Friends & Family
       
      I would like your help in signing a petition to get the Social Security Administration [SSA] to update their Disability Evaluation Under Social Security [often referred to as the Blue Book], used to evaluate the application of anyone applying for Social Security Disability Income [SSDI] who has Huntington's Disease.  
       
      The Huntington's Disease Society of America [HDSA] is advocating to get Congressional policy makers to our support efforts to have the Social Security Administration update this blue book mandating that it include a specific section for Huntington's Disease.  Currently Section 11.00 of this book addresses "Neurological Listings of Impairment" contains specific descriptions  for other neurological conditions such as Parkinson [11.06], Cerebral Palsy [11.07], Multiple Sclerosis [11.09], ALS [11.10],  Muscular Dystrophy [11.11] etc. but there is no specific category for Huntington's Disease.  Instead, HD falls into 11.17 "Degenerative Diseases Not Listed Elsewhere". 
       
      Failure by the SSA to include a specific section for Huntington's Disease continues to make it very difficult for people with HD to get approval for the disability benefits they have earned.  The gene for HD was found in March 1993 which has made genetic testing for this disease 99.9% accurate.  Yet here we are, 15 years later, and the SSA still has not updated their 'blue book' to acknowledge that people who are diagnosed HD positive will develop all of the debilitating symptoms of this disease!
       
      Won't you please help change the Social Security Administration's "Disability Evaluation Under Social Security"  for people who have Huntington's Disease by signing this very important HDSA petition?  Just go to the below link.
       
      Thank you!
      Jean
       
      SIGN THE HD PETITION!
      Click here to sign: www.hdsa.org/hd_petition
      Deadline February 10, 2008
      HDSA - One of our advocacy objectives is to improve how people with HD are evaluated for Social Security Disability benefits.  Currently, the Social Security Administration (SSA) uses outdated information when evaluating people with HD for benefits.  This lack of understanding has resulted in countless delays and denials for HD families already in great need. 
       
      One of our advocacy objectives is to improve how people with HD are evaluated for Social Security Disability benefits.  Currently, the Social Security Administration (SSA) is using outdated information when evaluating people with HD for benefits.  This lack of understanding has resulted in countless delays and denials for HD families already in great need. 
       
      We need your help to show Congress that the HD community wants a solution. WE are the ones that have to bring about these changes. WE have to urge Congress to act if we want and expect people with HD to not suffer such unnecessary hardships.

      The first step is easy: Show Your Support!
       If you want to be part of the solution, please sign the above petition!  We need to show Congress just how strong and supportive the HD community is and much we want and need these changes.
      Please add your name before February 10th.
       
      PETITION
      Nearly 30,000 Americans are affected by Huntington¬ís Disease, a devastating genetic brain disorder for which there is currently no cure or effective treatment.  Due to its progressively debilitating nature, each person affected with HD will become completely dependent upon others.  People with HD are routinely denied disability insurance by Social Security, and those that qualify must wait two years before receiving Medicare, long after most have lost their employer-provided health insurance.  The compounding effects of these barriers continue to leave many people with HD without the care they desperately need.  We strongly urge policymakers in Washington, DC to change these policies and improve the lives of all people affected by HD.
       
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      11.00 Neurological The Listing of Impairments June 2006 SSA Blue Book
      Sub-paragraph 11.17 "Degenerative Disease Not Listed Elsewhere" is the only current listing for Huntington's Disease.  This section requires the applicant with Huntington's Disease to have severe motor impairment [chorea 11.04b] , which not all people with HD have and/or they must have a "organic mental disorder" [12.02 updated Dec.2007] that not all people with HD may demonstrate. 
       
       
       
       
       
       
       


       
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