ALS awareness
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Waiting Period for Government Benefits Dropped for People Living With ALS

In a major win for disability rights advocates, individuals who are diagnosed with Amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease will no longer have to wait five months before becoming eligible to receive benefits under the Social Security Disability Insurance (SSDI) program.

According to NPR reporter Michelle Andrews, once individuals are diagnosed with the disease, “people with ALS often must quit their jobs — and sometimes their spouses do, too, to provide care — leaving families in financial distress.” 

The disease comes on quickly once diagnosed, and individuals and their families often go deep in debt just as quickly, before any sort of government aid comes through. That should change now, however, since the five-month cap delaying access to benefits has been removed.

“Eligibility for SSDI benefits generally requires people to have worked for about a quarter of their adult lives at jobs through which they paid Social Security taxes,” wrote Andrews. The five-month waiting period, she said, was originally “intended to make sure the program served only people [who] expected to have claims that would last at least a year.” 

Although ALS advocates are celebrating the decision, there are a remarkable 242 similar life-changing conditions, including leukemia and non-Hodgkin lymphoma, that still fall under the five-month waiting period. Meaning individuals with all these potentially deadly and debilitating disorders must still wait five full months before they are eligible for SSDI benefits.

Many are hoping the decision on ALS can serve as precedent and a model of reform for these other conditions, and mass legislation approving the removal of a waiting period for all of them can now be accomplished. The alternative — tackling the issue condition by condition — seems virtually untenable.

“Can you imagine, one by one, people with these conditions trying to find people in the House and in the Senate to champion the bill?” Carol Harnett, president of the Council for Disability Awareness, said to Andrews. And the many allies and supporters of the issue, along with those living with these life-altering conditions, agree.


D.I. Fast Facts


Amount paid out, on average, for SSDI disability benefits as of June 2020.
Social Security Administration


12,000 – 15,000

Estimated number of people in America currently living with ALS.
Centers for Disease Control and Prevention


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