Huntington's Disease Society of America

Social Security Announces Addition of Adult Onset Huntington's Disease To The Compassionate Allowance List

Social Security Commission Michael J. Astrue announced today that Adult Onset Huntington's disease will be added to the Compassionate Allowance List in December, 2012. This news follows the addition of Juvenile Huntington's disease to the Compassionate Allowance List effective in August, 2012.

Compassionate Allowances are a way of quickly identifying diseases and other medical conditions that invariably qualify under the statutory standard for disability. The Compassionate Allowances program fast-tracks disability decisions to ensure that Americans with the most serious disabilities receive their benefit decisions within days instead of months or years.

This is an important victory for our families, and HDSA is proud to have led this advocacy effort. HDSA has maintained a dialogue with SSA since 2004 to streamline the Disability process for HD. Since the inception of the Compassionate Allowances program in 2007, HDSA has been advocating for a CAL designation for HD through letters, testimony at hearings, and face-to-face meetings and most recently, in a November 2011 meeting with Commissioner Astrue and SSA senior officials.

In order to aid those seeking disability due to HD, HDSA has developed a Disability toolkit, located on the HDSA website at www.hdsa.org/disability that includes three training webinars, detailed information about the disability process, application strategies and answers to the most frequently asked questions about applying for Disability with Huntington’s disease.

HDSA advocacy efforts with the SSA are not finished. We continue to work with SSA to improve the Disability process for individuals affected by HD, and provide feedback and expertise as SSA develops CAL criteria.

I want to thank all of you for your support and participation in this process. Together we can bring Help for Today, Hope for Tomorrow to everyone affected by HD.

Louise Vetter

Chief Executive Officer

Friday, July 13, 2012	Press Office
For Immediate Release	410-965-8904
	press.office@ssa.gov
Social Security to Add Adult Huntington’s Disease to Compassionate Allowances Program The Social Security Administration will add symptomatic Huntington’s Disease to its Compassionate Allowances program for adults by the end of the year. The expedited disability process will identify people with significant symptoms of this devastating neurological disease. Adult Huntington’s Disease will accompany the designation of Juvenile Huntington’s Disease as a Compassionate Allowance condition, which will be effective next month. “Woody Guthrie, the composer of ‘This Land is Your Land,’ among hundreds of other folk classics, suffered and died from Huntington’s Disease, a progressive and always fatal disease of the brain that affects nearly 30,000 people in the U.S.,” said Michael J. Astrue, Commissioner of Social Security. “Tomorrow, July 14, would be his 100th birthday and thus it is a fitting time for this announcement.” Compassionate Allowances are a way of quickly identifying diseases and other medical conditions that invariably qualify under the statutory standard for disability. The Compassionate Allowances program fast-tracks disability decisions to ensure that Americans with the most serious disabilities receive their benefit decisions within days instead of months or years. For more information on the Compassionate Allowances initiative, please visit www.socialsecurity.gov/compassionateallowances. # # # SSA Press Office 440 Altmeyer Building 6401 Security Blvd. Baltimore, MD 21235 410-965-8904 FAX 410-966-9973