Social Security Administration
Issue: Individuals with ALS should be eligible for Social Security Disability (SSDI) after they receive an ALS diagnosis from their primary neurologist. The fact that an individual with a degenerative and ultimately fatal illness is ever turned down for benefits raises broader issues about the SSDI application process. Regulatory and statutory requirements that systematically delay access to benefits harm all beneficiaries, but they carry particular significance for individuals with fatal illness.
In 2000, the President signed into law The ALS Treatment and Assistance Act (HR 353), legislation waiving the two-year Medicare waiting period for SSDI-eligible individuals with ALS. This waiver reflects characteristics of ALS that distinguish it from other disabling conditions, including:
- Due to the progressive nature of ALS, the lack of any diagnostic tests for the disease, and the myriad other diseases with similar symptoms, it often takes a year or more to diagnose ALS. Individuals with ALS lose valuable time that could have been spent starting treatment and beginning the Social Security disability application process.
- It is hard to find any disease that causes more disability than ALS. Its progression results in total paralysis, leaving the patient unable to move, speak, swallow or breathe. People with ALS are totally dependent on caregivers for all aspects of life.
- There are no treatments to halt or reverse ALS. Riluzole, the only approved drug for ALS, increases survival on average for a few months, but no disease therapy is available.
Given these realities, Congress and the Administration determined that subjecting individuals with ALS to a two-year waiting period for Medicare was both inappropriate and inhumane.
Position: Request that individuals upon diagnosis of ALS be eligible for Social Security Disability after they receive an ALS diagnosis from their primary neurologist. This type of coverage is called presumptive eligibility and we hope that it is included in the soon to be released legislative and regulatory package sent to Congress from the Office of Commissioner Jo Anne Barnhart of the Social Security Administration.
Key Congressional Members:
Senate Appropriations Labor HHS Subcommittee
Senate Finance Full Committee & Social Security Subcommittee
House Appropriations Labor HHS Subcommittee
House Ways & Means Full & Social Security Subcommittee
Key Government Official & Agency:
Commissioner Jo Anne Barnhart, Social Security Administration
Action for SSDI
If you would like to get involved in advocating for the SSDI issue, please contact ALSA's Advocacy Department, toll free at: 1-877-444-2572 or via e-mail at: advocacy@alsa-national.org. You can also get involved by writing a letter to your Representative.
