Social Security to Add Huntington’s Disease to Compassionate Allowances Program

The Founder and Managing Director of Disability Group, the nation’s premier disability advocacy group, noted today that the Social Security Administration will add Huntington’s Disease to its Compassionate Allowances program by the end of the year.  People with significant symptoms of this devastating neurological disease, will now be able to qualify for Compassionate Allowances, expediting their benefits.  Adult Huntington’s Disease will accompany the designation of Juvenile Huntington’s Disease as a Compassionate Allowance condition, which will be effective next month.

“We understand that those who are in pursuit of disability benefits are often experiencing the most difficult time of their lives,” said Ron Miller, Managing Director of Disability Group. “We understand the physical, emotional, and financial toll that comes with being disabled and unable to work.  We want to carry our clients through the process of obtaining benefits in a way that eases stress and, in the end, improves quality of life,” said Miller.

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.

“The reality is that our government operates these programs quite efficiently.   Millions of people regularly receive the benefits they’ve been promised through our current systems and processes, and in special cases, Americans with the most devasting and aggressive disabilities can receive their benefit decisions in an expedited manner, often within days,” said Miller.

Compassionate Allowances (CAL) conditions are developed as a result of information received at public outreach hearings, comments received from the Social Security and Disability Determination Service communities, counsel of medical and scientific experts, and our research with the National Institutes of Health (NIH). Also, the Social Security Administration considered which conditions are most likely to meet the current definition of disability.


Compassionate Allowances (CAL) are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate Allowances allow Social Security to target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly. Compassionate Allowances is not a separate program from the Social Security Disability Insurance or Supplemental Security Income programs.

In April, Commissioner Astrue announced at the World Orphan Drug Congress 52 new Compassionate Allowances conditions, taking the list of conditions from 113 to 165. These conditions involve cancers, neurological, and immune system disorders affecting adults and children. The conditions are effective on August 11, 2012.

The Social Security Administration has noted that Commissioner Astrue announced a small grants program for graduate students to improve the disability determination process, including the Compassionate Allowances initiative. The Disability Determination Process Small Grant Program makes small stipends available to graduate students for innovative research relevant to the disability program. SSA awarded an approximately $1.5 million, five-year grant to Policy Research, Inc. (PRI) to serve as program manager.  In early 2012, SSA awarded the first grants to eight graduate students for research on a variety of disability topics, including improvements to the CAL program.