Washington, DC – U.S. Senators Sheldon Whitehouse (D-RI) and Tom Cotton (R-AR) today applauded the signing into law of the ALS Disability Insurance Access Act, bipartisan legislation that eliminates 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 builds on previous steps by Congress and the Social Security Administration to accommodate the difficult prognosis for those diagnosed with ALS. The bill passed the Senate by a vote of 96-1 and cleared the House unanimously.
“This represents a simple act of humanity for Americans battling a disease that often moves too quickly for the current system,” said Whitehouse. “Allowing patients and their families to immediately access the benefits they’ve earned will offer comfort as they confront a difficult diagnosis. Thank you to the tireless advocates and allies all over the country who joined our fight to get this done.”
“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 colleagues in Congress and the president for helping bring relief to Americans living with ALS.”
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 passing of the ALS Disability Insurance Act is a huge victory to the ALS community and is the result of years of dedicated advocacy all across the country,” said Beth Flanagan, Executive Director of the ALS Association Rhode Island Chapter. “ALS is 100 percent fatal. People lose their ability to control their muscles, including their ability to walk, feed themselves, talk and breathe. It usually takes 12 months to diagnose ALS and at that time patients are often already impaired. ALS patients and their families need immediate support to help tackle the emotional and financial burden that comes with diagnosis. We are so grateful to Senator Whitehouse for championing this cause and helping to provide the ALS community hope.”
“This legislation eliminates an unnecessary burden placed on the shoulders of people confronting a cruel, expensive and burdensome disease. It is a testament to the tenacity and perseverance of ALS advocates who laid the groundwork for victory through the hard work of building a coalition of legislative champions across partisan lines,” said Calaneet Balas, President and CEO of the ALS Association. “We are grateful to Sens. Sheldon Whitehouse and Tom Cotton and Reps. Seth Moulton and Peter King, along with all congressional champions who have worked alongside the ALS community for years to achieve this victory.”
“From this day forward, the ALS community has left its mark on changing policy for the betterment of thousands,” said I AM ALS CEO Danielle Carnival, Ph.D. “To the advocates who drove this change, to the Congressional officials who championed this forward, to the entire ALS community: today brings renewed hope and dignity.”
Whitehouse and Cotton first introduced the ALS Disability Insurance Act in 2016. The legislation was sponsored in the House by Congressmen Seth Moulton (D-MA) and Peter King (R-NY).
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