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ALS Advocacy Pays Off With Enormous Win Ending SSDI Waiting Period

-December 8, 2020

After a five-month waiting period for people with ALS to start receiving their Social Security Disability Insurance (SSDI) benefits, the ALS community earned a strenuous victory with passage of the ALS Disability Insurance Access Act this week. The ALS Association has worked tirelessly to build support for this policy in Congress since the very beginning, developing the bill with congressional champions and working with ALS advocates over the years to introduce the bill and lay the groundwork leading up to this win.

ALS advocates have reached out to members of Congress over 54,000 times since the legislation was first introduced in 2016—through phone calls, letters, in-person meetings, and via social media. All of the our collective efforts to educate lawmakers and the public about the rapid progression of ALS and the difficult and much delayed process of being diagnosed has helped build more support for the legislation. People living with ALS have worked for years to receive their SSDI benefits and they cannot afford to wait any longer.

There was only one sponsor in the House of Representatives when legislation to waive the five-month waiting period was first introduced. Thanks to ALS advocates everywhere, your hard work and persistance helped the bill gained 20 Senate cosponsors and 55 House cosponsors by the end of 2016. When a new Congress convened the following year, the bill was reintroduced with 33 original cosponsors in the House and Senate. ALS advocates continued to work, educating lawmakers and building momentum to the point where 67 Senators and 305 members of the House supported the bill just two years later in 2020.

“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,” said Sen. Sheldon Whitehouse (D-R.I.) after the Senate voted to pass the bill he cosponsored. In the four years since this bill was first introduced, less than 3% of all bills have passed into law.

The ALS Association Golden West Chapter is truly grateful for all of the ALS advocates, partners, and ALS organizations around the nation who joined us in the fight to against ALS to make this landmark legislation a reality. The passage of this bill shows that the ALS community is being heard.