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Congress Considers Eliminating 5-Month SSDI Waiting Period for ALS Patients

April 7, 2017

As it is written now, the law says that SSDI benefits can be paid only after an individual has been disabled continuously throughout a period of five full calendar months, regardless of the nature of their disability. SSDI benefits begin with the sixth full month after the date that Social Security finds their disability began (also known as the established onset date).

Newly proposed legislation aims to provide healthcare support to amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s Disease) patients quickly after they’re diagnosed, bypassing the five-month waiting period currently mandated under the Social Security Disability Insurance (SSDI) law.

As Barbara Newhouse, president and CEO of the ALS Association, said in a press release, “five months can mean the difference between life and death. 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.” Under the proposed ALS Disability Insurance Access Act of 2017, those with ALS could immediately begin receiving SSDI benefits which, in turn, also makes them immediately eligible for Medicare. (For most disabilities there is a 24-month waiting period for Medicare benefits after SSDI benefits have been awarded. Congress waived the 24-month Medicare waiting period for people with ALS in 2000. However, people with ALS who qualify for SSDI at this time must still wait five full months before they can begin to receive both SSDI and Medicare.)

The ALS Disability Insurance Access Act of 2017 has bi-partisan support in both the Senate and the House of Representatives. Senator Sheldon Whitehouse (D-R.I.) and Senator Tom Cotton (R-Ark.), introduced the bill, which was originally co-sponsored by Senator Lisa Murkowski (R-Alaska) and Senator Bill Nelson (D-Fla.). Representative Seth Moulton (D-Mass.) and Representative Peter King (R-N.Y.) are championing the bill in the House.

“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,” Representative King said. “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. I am proud to stand with the ALS community in support of this bipartisan bill.”