Social Security Commissioner, Michael J. Astrue, announced today that the SSA is adding Juvenile Onset HD (JHD) as a Compassionate Allowance (CAL) condition!

This means that, in August, when the program becomes effective, an individual diagnosed with JHD can get their Disability application approved much more quickly – sometimes within days. Medical conditions on the Compassionate Allowances list are so devastating that they qualify for Social Security benefits based on minimal objective medical information. Read the press release here.

This is an important victory for our families facing Juvenile Onset Huntington’s disease, and HDSA is proud to be a part of this victory. Over the past several years, we have been working with SSA to streamline the Disability application process for HD, and to advocate for a CAL designation for HD through letters, testimony at hearings, face-to-face meetings, as well as legislation such as the Huntington’s Disease Parity Act (HR 1015/S.723). We will continue our dialogue with the SSA until adult-onset Huntington’s disease is also added as a CAL condition.

As SSA moves forward to implement the CAL designation for JHD in August, HDSA will be educating the 38 HDSA Social Workers, the staff at HDSA Centers of Excellence, as well as the medical professionals who see individuals with JHD so they can assist families to utilize this new fast track process to apply for Social Security Disability, which includes both Social Security Disability Income (SSI) as well as Social Security Disability Insurance (SSD).  HDSA also has a Disability Toolkit, located on the HDSA website at www.hdsa.org/disability.

For more information about CAL, or to get involved in HDSA advocacy, contact Jane Kogan at jkogan@hdsa.org.