ALS Disability Insurance Access Act Signed into Law

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We are excited to announce that on Tuesday (December 22), the ALS Disability Insurance Access Act (H.R. 1407/S. 578) was signed into law, ending the five-month waiting period for people with ALS to access Social Security Disability Insurance benefits. The bill had been sent to the President for his signature earlier in the month, after passing both the U.S. House and Senate.

The Les Turner ALS Foundation partnered with several national ALS patient advocacy organizations (ALS Association, I AM ALS, Muscular Dystrophy Association and Team Gleason) over the past few years to rally support for financial relief for those living with ALS. The groups most recently sent a co-signed letter to Congress in September urging passage of the ALS Disability Insurance Access Act.

“This law has been a long time coming and will help to pave the way to relieving the financial stresses that people living with ALS and their family members too often experience,” said Les Turner ALS Foundation CEO Andrea Pauls Backman. “We thank the many ALS groups we partnered with over the years on the ALS Disability Insurance Access Act, the lawmakers and legislators who championed the bills, and the countless individuals impacted by ALS who wrote emails and letters and met in-person and virtually with their elected officials to ensure that their voices were heard.”

During the current COVID-19 pandemic, ALS advocates emphasized that the legislation was needed now more than ever. In addition to being a terminal disease, ALS is a financially devastating diagnosis irrespective of the pandemic, costing up to $250,000 per year in care and expense. The economic impact and job loss of COVID-19 has been particularly acute not only for people living with ALS but also their family members who provide both caregiving and financial support.

Timely access to SSDI and Medicare benefits to help pay for medical care, food and housing is essential to ease the impact of COVID-19 on people with ALS and their families. There was strong precedent for waiving the five-month waiting period. In 2000, the ALS community pushed Congress to recognize the unique features of ALS and it passed a bipartisan bill, waiving the standard two-year waiting period before people with the disease could become eligible for Social Security Disability Insurance benefits.

What’s next now that the ALS Disability Insurance Access Act is law? The Social Security Administration must implement it before the five-month waiting period is eliminated. Together, with our advocacy partners, we are pushing them to work as quickly as possible to enable SSDI applicants with ALS to receive benefits immediately. We will keep you updated with the latest information.