Huntington's Disease Society of America

Adult-Onset joins Juvenile-Onset HD on Social Security List of Compassionate Allowance Conditions

Social Security Administration Commissioner Michael J. Astrue presided at an event celebrating the growth of the SSA's Compassionate Allowance List to 200 Conditions. As of today, Adult-Onset Huntington's disease is included, as has Juvenile-Onset HD since April, 2012.

For information on utilizing the CAL Program for either Adult-Onset or Juvenile-Onset HD click here.

Louise Vetter spoke at the event and presented Commissioner Astrue a plaque on behalf of the HD families who will benefit from this development.

The addition of both forms of HD to the list means that individuals and families applying for Social Security Benefits will now be entered into a fast-track which will alleviate the years of rejection and re-application that so many have experienced. It also recognizes the cognitive and psychological symptoms of HD and establishes criteria for their use in the qualification process.

The addition of Juvenile-Onset and Adult-Onset HD to the CAL is a great culmination of the years of work by the HDSA Programs and Services Department, and the thousands of HD Advocates who have visited their elected representatives on behalf of the cause. They are now focused on the HD Parity Act, which addresses other SSA issues and the two-year waiting period for Medicare. Several of the advocates who worked on this initiative joined Dr Chris Ross and HDSA staff at the event.

Jane Kogan, HDSA Manager of Advocacy & Education was recognized by the SSA at the event, and received an award for her efforts to bring HD to the CAL.

All HDSA Chapter and HDSA Center of Excellence social workers are receiving training on how to use CAL.