Bill to Eliminate 5-Month SSDI Waiting Period for ALS Patients Gets Bipartisan Support

Bill to Eliminate 5-Month SSDI Waiting Period for ALS Patients Gets Bipartisan Support

The ALS Association is urging Congress to pass legislation that would waive the Social Security Disability Insurance (SSDI) five-month waiting period for patients with amyotrophic lateral sclerosis (ALS).

Under the ALS Disability Insurance Access Act of 2017, people with ALS could immediately begin receiving SSDI, which in turn qualifies patients to get Medicare as well. Current law requires ALS patients who qualify for SSDI to wait five months before they can receive SSDI and Medicare, regardless of the severity of their disease.

The proposed legislation builds on previous actions taken by Congress and the Social Security Administration to recognize the unique nature of ALS. In fact, the only reason ALS patients who receive SSDI are eligible for Medicare immediately is because Congress dropped a 24-month waiting period in 2000 — the only time such an action was successful.

“This legislation is especially important for people with ALS, for whom five months can mean the difference between life and death,” Barbara Newhouse, president and CEO of the ALS Association, said in a press release. “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.”

ALS usually strikes people between the ages of 40 and 70, and some 20,000 Americans have the disease at any given time.

In a rare show of bipartisanship, Sen. Sheldon Whitehouse (D-R.I.) and Sen. Tom Cotton (R-Ark.) introduced the bill, whose original sponsors were Sen. Bill Nelson (D-Fla.) and Sen. Lisa Murkowski (R-Alaska). Rep. Seth Moulton (D-Mass.) and Rep. Peter King (R-N.Y.) introduced a companion 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,” 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.”

2 comments

  1. Pat says:

    I have seen how fast a person with ALS can go downhill physically in five months, they don’t have time to wait, once the disease is diagnosed, they need help immediately. The ALS Disability Act is necessary to give them all the help they need ASAP. Thank you to the six Congresspeople who are standing up for ALS victims and their families!

    • Tim Bossie says:

      That is absolutely right. Five months can mean a lot to someone with ALS and how quickly it can progress. It is our collective hope that this bill is passed quickly without any debate.

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