In the final days of 2020, the President signed the ALS Disability Insurance Access Act. This new law eliminates the five-month waiting period for individuals with Amyotrophic Lateral Sclerosis (ALS) before they can receive Social Security Disability benefits. Many people do not know that if you become disabled and can no longer work, you must wait five months before collecting Social Security disability benefits.

Social Security Disability Benefits

Of course, most applications for disability benefits take substantially longer than five months. Once approved, benefits are paid retroactively, but only back to the sixth month after the disability began. This rule is meant to eliminate the collection of benefits for temporary or reversible disabilities. However, the logic fades when one considers that it often takes more than six months to get an initial determination. Moreover, individuals who are denied in their initial determination often must wait more than two years to get a disability decision. One would think that if the Social Security Administration (SSA) decides that the individual has been disabled for the last two years, there would be no reason to deny benefits for the first five months of their disability.

In the case of ALS, the five-month waiting period was particularly illogical and pernicious. First, ALS often takes a long time to diagnose and is never reversible. In fact, ALS is on the SSA’s listing of impairments, meaning that an ALS diagnosis results in the applicant being automatically eligible assuming they meet the non-medical (i.e., work) criteria. Moreover, the SSA provided for expedited approval of ALS cases in recognition of the rapid progression of the disease in many individuals. The incongruity of an expedited approval process and a five-month eligibility delay led to a push for this legislation.

ALS Disability Insurance Access Act

Prior to the new bill, the expedited approval meant only that an individual could receive SSI and Medicaid. They still had to wait five months to receive their Social Security disability benefits, which are based on their work history and generally substantially higher than the SSI amount. In addition, an individual approved for SSDI benefits for ALS becomes eligible for Medicare at the same time. (Most other individuals must wait two years for Medicare eligibility.)

The five-month delay was especially devastating for individuals with ALS, many of whom require expensive care and equipment during that period as the disease often progresses quickly. Advocates have fought for the passage of this bill since 2016. Today, we can celebrate the passage of this bill as one less bureaucratic obstacle for individuals facing ALS, and their families.