HDSA has been working with the Social Security Administration (SSA) for several years to achieve two goals:
Update the neurological listings used by the Social Security Administration to include more comprehensive symptoms of the disease, including psychological and cognitive symptoms that often appear before physical symptoms.
Add Huntington’s Disease and Juvenile Onset Huntington’s disease (JHD) to the Compassionate Allowance List, allowing for faster approvals of disability claims for persons with HD.
Because of tremendous advocate efforts, the SSA has added both HD and JHD to the Compassionate Allowances List, but there is still work to be done.
In addition to asking Congress to direct the SSA to update the Neurological listings for HD through the Huntington's Disease Parity Act, HDSA is working directly with the Social Security Administration to update the Neurological listings for HD and JHD to make sure they accurately capture the effects of Huntington's disease.