ALS Association Cheers Likely End of 5-Month Wait for US Disability Benefits

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by Mary Chapman |

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After years of behind-the-scenes work, the ALS Association is celebrating passage of the ALS Disability Insurance Access Act of 2019, likely to end the nearly half-year wait amyotrophic lateral sclerosis (ALS) patients go through to receive Social Security Disability Insurance (SSDI) benefits.

The U.S. Senate earlier this month passed the bill aiming to make it easier for people with ALS to get disability benefits, and the U.S. House of Representatives followed with approval six days later, on Dec. 8.

Once the legislation is signed by the president, as is expected, it will become law.

“A bill can look like it was easy to get done when it passes 96-1, but that doesn’t mean that the pathway was easy. This has been years, and years of effort,” Sen. Sheldon Whitehouse (D-Rhode Island) and the 2019 bill’s co-sponsor, said in a press release. Rep. Tom Cotton (R-Arkansas) was the other co-sponsor.

The legislation scraps a mandatory five-month waiting period for ALS patients to receive SSDI. The statutory aim of the waiting period was to allow time for temporary conditions to improve. But with no current treatments able to block this disorder’s progression, many die before becoming eligible for benefits.

Doing away with an enforced waiting period is also expected to ease some of the financial strain that accompanies an ALS diagnosis.

From the start, the ALS Association, with the help of the ALS community, worked to build support for the policy. It helped to develop the bill, and assisted advocates through the years, first in introducing the bill to Congress in 2016 and then shepherding it through the legislature.

Over the last four years, ALS advocates contacted lawmakers more than 54,000 times via social media, phone calls, letters, and in-person meetings. The legislation became a priority for the Senate ALS Caucus, which was founded earlier this year.

“This campaign to educate lawmakers and the public about the rapid progression of ALS and the long delays in diagnosis contributed to a steady increase in support for the legislation,” the ALS Association stated in the release. “People living with ALS do not have five months to wait for SSDI benefits they have worked for over the course of their careers.”

When it was first introduced, the legislation had one House sponsor. By the end of 2016, largely due to the advocates’ work, it had garnered 75 co-sponsors. The following year, after a new Congress convened, the measure was reintroduced with 33 original co-sponsors.

ALS advocates kept at it, educating and encouraging the lawmakers. This year, their efforts were rewarded with 67 senators and 305 House members backing the proposed change.

“The ALS Association is incredibly grateful for all of the ALS advocates, partners, and ALS organizations around the country who joined us in the fight to make this legislation a reality,” the organization wrote. “The passage of this bill shows the ALS community that their voices are truly being heard.”