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Congress Votes to Waive the Five-Month Waiting Period for People Fighting ALS

December 11, 2020

In 2000, Congress recognized the unique features of ALS and passed a bipartisan bill waiving the standard two-year waiting period before people with the disease become eligible for Medicare. This week, both the House and Senate have passed Senate Bill 578: The ALS Disability Access Act in an all too rare bipartisan effort.

The bill will waive the five-month waiting period for people applying for Social Security Disability Insurance (SSDI) who have been diagnosed with ALS (Amyotrophic lateral sclerosis) also known as Lou Gehrig’s disease. This bill, introduced by Senators Sheldon Whitehouse (D) and Tom Cotton (R), now heads to the desk of President Trump who is fully expected to sign it into law.

The bill was introduced with strong bipartisan support from 40 senators and 90 representatives. This achievement is the result of years of hard work by advocates in the ALS community. We at Balin Law salute their efforts.

Social Security disability waiting period

If you are eligible for SSDI, there is a five-month waiting period before Social Security can begin to actually pay you your SSDI benefits. Social Security will only pay your first benefit for the sixth full month after the date they find your disability began. For example, if Social Security determines that you first meet the requirements for disability on January 3, 2021, then your first month of payable benefits will be July 2021 or five full calendar months later.

An ALS diagnosis is an extraordinarily tragic event as any family to have experienced the disease knows. ALS is a progressive disease for which there currently is no cure. People living with ALS simply do not have months to wait. “Over the course of a five-month waiting period, people living with ALS will have only experienced progressive loss of function and will have incurred significant expenses for care and treatment,” said Calaneet Balas, president and CEO of The ALS Association. The average ALS patient lives for two to four years after their diagnosis and spends $100,000 in medical care.

This is a great achievement. Now we need to tell Congress to get rid of the five-month waiting period for all other disabilities. Especially to not make people wait 29 months (!) for their Medicare coverage to kick in. Allowing people to access Medicare earlier will result in a healthier population with overall lower costs of care.

A Special Dedication

We are dedicating this blog to family friend Frank Bonifati of North Huntington, Pennsylvania. Frank’s fight with ALS ended in early December 2020. His memory is a blessing to all who knew him.

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