Ice Bucket Challenge, ALS and New Bills in Congress


(Illustration by © voinsveta)

Remember back in the summer of 2014 when golf pro celebrities began a “the ice bucket challenge” by either pouring a bucket filled with ice water on their heads or paying $100 (or both) to raise awareness of amyotrophic sclerosis (ALS), sometimes known as Lou Gehrig’s disease?  By the end of the summer of 2014, over 2million videos were seen on social medial, especially Facebook, showing ice water being poured onto the heads of millions of people.

ALS is a terrible disease striking about 2 people per 100,000 per year in the U.S. and U.K. alone.  ALS strikes normally when a person is in his or her early sixties.  It attacks the muscle system, making them weak at first and then causing issues with speaking, swallowing and later breathing.  Sadly, the average time which its victims survive is 2 to 4 years from onset.

People who have been diagnosed with ALS who can satisfy the regulatory standards for ALS will receive Social Security disability benefits.  In fact, ALS is on a Social Security Administration list of over 250 other diseases called  “Compassionate Allowances.”  This list was created by Social Security Administration as a way to decide, on a hurry up basis, the disability claim of a person whose medical condition is very serious and would likely be awarded benefits.  If the Social Security disability claim is based on a disease which is on the Compassionate Allowance list, then that claim is considered on an expedited basis.  (Obviously, the fact that a person’s claim for Social Security disability benefits is on the Compassionate Allowance list does not mean that it will be automatically allowed.)

A victim of ALS and who has had their disability claim quickly evaluated, under the Compassionate Allowance system, and is awarded Social Security disability faces yet another hurdle before being paid disability benefits: the 5 month waiting period.

The 5 month waiting period is a creature of the U.S. Congress.  Congress wanted to carve out a time period for disability claims which would remove from benefit payments “short term illnesses” and would also be long enough to discourage people from applying for benefits if they could work.  For example, if a disabled worker filed for benefits on January 2, 2017 saying he/she was disabled with ALS as of December 23, 2016, the soonest that the disability benefits could be paid, if they showed they were disabled in December 2016, would be June, 2017. For those with ALS, waiting that long for benefits may mean that they will never see a disability check.

On February 15, 2017, S. 379, was introduced in the Senate.  On February 16, 2017, H.R. 1171, was introduced in Congress.  These bills called, the “ALS Disability Insurance Access Act of 2017” would, if passed, eliminate the five month waiting period for disability insurance benefits for people with ALS.  The Senate’s bill has been referred to the Senate Finance Committee.  The House bill has been referred to the House Ways and Means Committee.  If the legislation passes and is signed into law, the effective date of the amendment will be for all applications filed after the effective date of the enactment of the amendment.  Hopefully, Congress and the President can do the right thing by acting quickly and make one of these bills a new law.

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