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Home > Why The Five-Month SSDI Waiting Period For People With ALS Needs to Be Eliminated

Why The Five-Month SSDI Waiting Period For People With ALS Needs to Be Eliminated

by | Mar 7, 2019

Pictured: Mary Johnson, Caregiver

Last week the ALS Disability Insurance Act was reintroduced in the 116th Congress. The bill (S.578) aims to eliminate the five month waiting period for disability insurance benefits for those with ALS.

Because of the nature of ALS, and how rapidly symptoms can arise and progress, people with ALS simply do not have five months to wait. They deserve their benefits, that they earned, immediately. Mary Johnson, a caregiver from Pennsylvania whose family has the genetic form of ALS, has lost 14 family members to the disease. One of those family members, her niece, passed away only four months after her diagnosis.

“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. “We urge Congress to pass this legislation and remove the arbitrary five-month waiting period that creates an unfair financial burden on people whose life expectancy is so tragically abbreviated.”

Because of advocacy from our community, last year the bill was introduced and gained traction. Seven months later, for the first time ever, the bill was unanimously considered for passage through the senate. We have hope that this bill can pass, and we need your help to make it happen!

Ask your members of Congress to cosponsor this bill today to keep the momentum going!

Also tweet or share your support on Facebook, in order to spread the word. Together we can make a difference for people with ALS.

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How ALS Patients Can Help

Once you’ve been diagnosed with ALS, it’s easy to feel like you just don’t have many options, but there are ways you can make a difference.

How You Can Help People With ALS

We all have a part to play in the fight against ALS! Your generous support funds critical research for better treatments and a cure for this disease. Here are a few ways you can help: