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February 20th, 2017
Washington, D.C. – On Thursday, Feb. 16, Congressmen Seth Moulton (D-MA) and Peter King (R-NY) re-introduced The ALS Disability Insurance Access Act, bipartisan legislation they spearheaded to ensure that amyotrophic lateral sclerosis (ALS) patients are provided vital support and benefits in a more timely manner.
The legislation would waive the Social Security Disability Insurance (SSDI) five-month waiting period for people living with ALS, commonly referred to as Lou Gehrig’s Disease.
“ALS is a cruel and unforgiving disease, and it’s vital that we provide the best possible care for people living with it,” said Congressman Moulton. “I’m one of the millions of people inspired by my friend, Pete Frates. You only need to spend a few minutes with Pete to appreciate his resilience, and Pete and his family have been fierce advocates for research towards a cure. 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 the SSDI benefits that people living with ALS and their families need and deserve.”
“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 Congressman King.
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 currently no known cause or cure.
“An ALS diagnosis is a traumatic, emotional reality that every patient and their family must face,” said Beverly resident Nancy Frates, mother of ALS patient Pete Frates and member of the National Board of Trustees of the ALS Association. “Soon after diagnosis, they learn of the foreboding financial burden that looms. In a disease where time is a most precious commodity, a 5-month waiting period for benefits is cruel and unacceptable. Our family is honored to be represented by Congressman Seth Moulton who we consider a champion for ALS families. Today’s bill is a huge step is helping ease some of the unimaginable pain ALS envelopes it’s families in. We are so grateful for his leadership.”
Under current law, people with ALS cannot receive their Medicare benefit until they are eligible to receive SSDI, which is subject to a five-month wait period.
Moulton and King’s legislation builds on the previous actions taken by Congress and the Social Security Administration by waiving the five-month waiting period for critical SSDI benefits. A Senate version of the bill was introduced by Sen. Sheldon Whitehouse (D-RI) and Sen. Tom Cotton (R-AR).
“This legislation is especially important for people with ALS, for whom five months can mean the difference between life and death,” said Barbara Newhouse, President and CEO of The ALS Association. “Nearly half of those living with ALS will die within 16 months of diagnosis, so it’s critical that they receive the benefits they deserve and have paid for as quickly as possible.”
Newhouse continued, “This effort is truly bipartisan and we applaud those champions in the Senate and House for fighting for people with ALS and working to ensure they have access to the vital health and disability benefits.”
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