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Security Administration (SSA) uses outdated information when evaluating people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Administration (SSA) is using outdated information when evaluating people with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's 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
http://www.ssa.gov/disability/professionals/bluebook/11.00-Neurological-Adult.ht\
m
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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