On the recordDecember 17, 2018
Mr. President, I thank the Senator from Rhode Island for his work on this important issue. I have had numerous ALS sufferers and family members of those who suffer from ALS approach me about this bill early in my time in the Senate, and I have been grateful for the opportunity to work with the Senator from Rhode Island to try to address this very sad problem. ALS is a progressive and disabling disease for which there is no cure. It is fatal in all cases. Unfortunately, like almost every other condition, ALS sufferers are required to wait for 5 months before they receive the Social Security Disability Insurance benefits they have earned; that they earned through a lifetime of paying taxes into Social Security. I understand the purpose of this 5-month waiting period is to weed out temporary conditions, but ALS is not a temporary condition--or to prevent fraudulent claims, but it is hard to imagine anyone making a fraudulent claim on disability based on an ALS diagnosis. The average disability beneficiaries expect to receive benefits for about 20 years, but, unfortunately, those who have been diagnosed with ALS only have a life expectancy of approximately 3 years. Therefore, the disability waiting period of 5 months means that those on ALS will lose, on average, nearly one-seventh of the benefits they have paid a lifetime for. Of course, some will lose a lot more because of ALS's particularly degenerative nature.…





