ALS Advocacy Pays Off With Enormous Win Ending SSDI Waiting Period

The ALS community earned a hard-fought victory this week with passage of the ALS Disability Insurance Access Act, ending the five-month waiting period for people with ALS to start receiving their Social Security Disability Insurance (SSDI) benefits. The ALS Association has been tirelessly engaged in building support for this policy in Congress from day one, developing the bill with congressional champions and working with ALS advocates over the years to introduce the bill and lay the groundwork for this win.

Since the legislation was first introduced in 2016, ALS advocates have reached out to members of Congress more than 54,000 times through phone calls, letters, in-person meetings, and via social media. 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. 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 legislation to waive the five-month waiting period was first introduced, it had just a single sponsor in the House of Representatives. Thanks to the hard work and determination of advocates everywhere, 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 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 landmark legislation a reality. The passage of this bill shows the ALS community that their voices are truly being heard.

Your generosity will ensure that people with ALS and their families continue to receive the support they need to face the increased physical, financial and emotional burden brought on by the impact of COVID-19.

Your support will also help advance global ALS research and increase our advocacy efforts to make ALS a national priority. Please consider making a year-end tax-deductible donation today.


An Update on COVID-19, ALS and Chapter Events

The Chapter understands that many of you in our ALS community may have questions and concerns related to the spread of the coronavirus, known as COVID-19. We are closely monitoring national government health agency guidance and consulting with our local and state health agencies on dealing with the coronavirus.


Information about local programs, services and events is available here.

We have an FAQ that examines COVID-19 and ALS. You can read it here.

For the most recent information about the coronavirus (COVID-19), The ALS Association recommends that you reference the websites for the Centers for Disease Control (CDC), the World Health Organization (WHO), and state and local health authorities.


For specific information about symptoms you may be experiencing or questions about personal exposure as someone living with ALS or as a caregiver, please contact your physician directly.


Thank you for your patience as we manage this rapidly shifting situation.

Become an Advocate
Help change the laws and policies that affect thousands of people with ALS and their families.

ALS advocates lead the fight to defeat ALS on the frontlines. You can lead us closer to a world without ALS by joining the dedicated network of ALS advocates nation-wide. As an ALS advocate, you can help change the laws & policies that affect thousands of people living with ALS and their families.

The National ALS Registry is a congressionally mandated registry for persons in the U.S. with ALS. It is the only population-based registry in the U.S. that collects information to help scientists learn more about who gets ALS and its causes.

The Mid-America Chapter supports people living with ALS and their loved ones through services and education in Kansas, Nebraska and Western Missouri. We leave no stone unturned in search for the cure of this progressive neurodegenerative disease.


The ALS Association Mid-America Chapter Regional office

6405 Metcalf Ave., Ste. 205

Overland Park, KS 66202

(913) 648-2062


Kansas City area office
6405 Metcalf Ave., Ste 205
Overland Park, KS 66202

(913) 648-2062

Central Kansas office
3450 N. Rock Rd., Ste 208
Wichita, KS 67226

(316) 612-0188

Nebraska office
900 S. 74 PLZ., Ste 106
Omaha, NE 68114

(402) 991-8788

Southern Missouri office
3259 E Sunshine St., Ste. V
Springfield, MO 65804

(417) 886-5003

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