Washington, DC – U.S. Senators Sheldon Whitehouse (D-RI) and Tom Cotton (R-AR) today applauded Senate passage of the ALS Disability Insurance Access Act, bipartisan legislation to eliminate the five-month waiting period before ALS patients can receive the Social Security Disability Insurance benefits they earned by contributing to Social Security. The legislation would build on previous steps by Congress and the Social Security Administration 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 suffering from 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 ability of the brain 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.”
“ALS is a cruel disease that progresses fast, currently without a cure. Help can’t come soon enough once someone is diagnosed and this bill recognizes that. It takes courage to be a true champion for patients and we are grateful to Senators Whitehouse and Cotton for introducing this legislation,” I AM ALS CEO Danielle Carnival said. “To the thousands of advocates who drove this bill forward, you are our hope. You are changing history one step at a time. This passage in the Senate is in celebration of your efforts.”
“The ALS Association and ALS community urges the House to immediately pass the ALS Disability Insurance Access Act, which just passed the Senate,” said Calaneet Balas, President and CEO of The ALS Association. “The legislation would make SSDI benefits accessible to people with ALS right away. Our community has worked tirelessly with congressional champions over the years laying the groundwork for this bill, educating lawmakers and the public about the rapid progression of ALS and the long delays in diagnosis. Over the course of a five-month waiting period, many people living with ALS will experience serious loss of ability and will have incurred significant expenses for care and treatment. They urgently need support.”
Whitehouse and Cotton first introduced the ALS Disability Insurance Act in 2016. The legislation awaits approval in the House, where it is sponsored by Congressmen Seth Moulton (D-MA) and Peter King (R-NY).
