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US Senate passes ALS Disability Insurance Access Act

United States Capitol. Washington, D.C.

The U.S. Senate has passed a legislation that may make it easier for people with amyotrophic lateral sclerosis (ALS) to access Social Security Disability Insurance benefits.

The proposed bill, the ALS Disability Insurance Access Act of 2019, gives those living with ALS immediate access to Social Security Disability Insurance benefits once approved, ending the current five-month waiting period.

The legislation would build on Congress and the Social Security Administration’s previous steps to accommodate the difficult prognosis for those diagnosed with ALS. The bill passed in a 96-1 vote.

“Allowing Americans who face this difficult diagnosis to immediately receive the benefits they have earned is a simple act of humanity that will make life easier for ALS patients and their families,” said Whitehouse. “I hope the House will act quickly so we can finally eliminate this bureaucratic obstacle.”

“Americans who have ALS shouldn’t have to wait for assistance, especially given their tragically short life expectancy—and now they won’t have to,” said Cotton. “By waiving the statutory disability benefits waiting period, our bill makes support available to those suffering from this terrible disease much faster. I’m grateful to my Senate colleagues for supporting this important legislation, and I strongly urge the House to do the same.”

Amyotrophic lateral sclerosis, commonly known as ALS or Lou Gehrig’s disease, is a neurodegenerative disease affecting the brain’s ability to control muscle movements. Individuals with ALS progressively lose the ability to speak, walk, and breathe. The intended purpose of a five-month waiting period is to allow temporary conditions to reverse. However, there is currently no cure or treatment to halt or undo the effects of ALS, and some ALS patients lose their fight with the disease before ever receiving benefits. The ALS Disability Insurance Access Act would help alleviate some of the financial hardship that accompanies an ALS diagnosis and support those living with ALS and their families.

“The five-month waiting period for Social Security Disability Insurance for those living with ALS creates a major barrier in the ability to access vital health care, benefits, and support services for those bravely fighting the disease,” said Beth Flanagan, Executive Director ALS Association RI Chapter. “Over the course of the five-month waiting period, people with ALS experience progressive loss of function that leads to more treatment and higher levels of care. The out of pocket expense to care for a loved one with ALS is approximately $250,000, and SSDI benefits are critically important in helping to ease that financial burden for patients and their families. The ALS Association RI Chapter is grateful to Senator Whitehouse for his steadfast support of the patients and families we serve.”

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