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Eliminating Waiting Period for SSDI for People with ALS - ALS Disability Insurance Access Act

  • Published: 2016-05-11 : Author: The ALS Association : Contact:
  • Synopsis: ALS Disability Insurance Access Act introduced in Congress to eliminate waiting period for Social Security Disability Insurance for people with ALS.

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"We applaud Senator Whitehouse and Representatives Moulton and King for their leadership in fighting for people with ALS and working to ensure they have access to the vital health and disability benefits that are so essential to everyone living with ALS and their families."

The ALS Association welcomed the introduction of new legislation to waive the Social Security Disability Insurance (SSDI) five-month waiting period for people living with ALS. The ALS Disability Insurance Access Act was introduced in the Senate by Senator Sheldon Whitehouse (D-RI) and in the House by Representatives Seth Moulton (D-MA) and Peter King (R-NY). The legislation was introduced during The Association's Annual National ALS Advocacy Day when nearly 1,000 ALS advocates from across the U.S. were meeting with Members of Congress on Capitol Hill to continue the fight against the disease.

"People with ALS, who have lost the ability to walk, talk and even breathe on their own and who currently do not have an effective treatment option, should not be forced to wait to receive benefits they deserve and have paid for," said Barb Newhouse, President and CEO of The ALS Association. "We applaud Senator Whitehouse and Representatives Moulton and King for their leadership in fighting for people with ALS and working to ensure they have access to the vital health and disability benefits that are so essential to everyone living with ALS and their families."

Amyotrophic lateral sclerosis (ALS) is neurodegenerative disease that affects nerve cells in the brain and the spinal cord, leading to total paralysis and death within two to five years of diagnosis. For unknown reasons, veterans are twice as likely to develop ALS as the general population. There is no known cause or cure. Currently, there is only one drug approved by the U.S. Food and Drug Administration (FDA) that modestly extends survival.

"Those battling Lou Gehrig's Disease shouldn't have to wait to get benefits they've earned, especially given the unique challenges the disease poses for patients and their families," said Whitehouse. "I'm proud to stand with the ALS community in introducing this legislation in the Senate."

SSDI provides critical benefits to people disabled with ALS and is a vital resource for ALS families who are unable to work and generate an income due to the disabling and fatal nature of the disease. Moreover, eligibility for SSDI enables people with ALS to immediately qualify for Medicare as Congress waived the 24-month Medicare waiting period for people with ALS in 2000. However, under current law, people with ALS who qualify for SSDI still must wait five months before they can begin to receive both SSDI and Medicare, regardless of the degree of disability and regardless of how fast the Social Security Administration approves claims.

"The cruel and unforgiving nature of ALS makes it imperative that we provide the best possible care for people living with the disease," said Congressman Moulton. "I join millions of people in Massachusetts and around the world who have been inspired by my friend, Pete Frates. In the face of tremendous adversity, Pete and his family have focused their efforts on raising awareness and advocating for research towards finding a cure. You only need to spend a few minutes with Pete to appreciate his resilience, and we owe it to Pete, his family, and all Americans impacted by ALS to provide top quality care. I'm proud to introduce this bipartisan bill to provide critical SSDI benefits that people living with ALS and their families need and deserve."

The ALS Disability Insurance Access Act would waive the five-month waiting period for people disabled with ALS and enable them to immediately begin to receive SSDI benefits and Medicare. The legislation builds on previous actions taken by Congress and the Social Security Administration that recognize the unique nature of ALS, a disease the progresses rapidly, always is disabling and always is fatal. In fact, Congress already waived the 24-month Medicare waiting period for ALS, the only time the waiting period has ever been waived. SSA also has implemented a number of policies to expedite the review of ALS claims for SSDI and Supplemental Security Income benefits.

"Given the prognosis for those diagnosed with ALS, it defies common sense and decency to require these same individuals to wait for benefits they have paid for and most importantly deserve," said King.

Newhouse continued, "Congress originally justified the five-month waiting period by saying it allows time for temporary conditions to reverse. Unfortunately, that's not currently possible for someone with ALS. In fact, nearly 50 percent of people with ALS will die within 16 months of diagnosis. For them, five months can mean the difference between life and death."

The ALS Association is the only national non-profit organization fighting Lou Gehrig's Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure. For more information about The ALS Association, visit our website at

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