Support for ALS Disability Insurance Access Act Grows Following Advocacy Conference

We need your help! Now is the time to urge your representatives and senators to waive the five-month waiting period for Social Security Disability Insurance (SSDI) benefits for people living with ALS.

Under current law, people disabled with ALS who qualify for SSDI must wait five months before receiving SSDI benefits. Every patient must wait regardless of the level of disability or how fast the Social Security Administration (SSA) approves their claim.

The ALS Disability Insurance Access Act (S.379/H.R.1171) would eliminate that five-month waiting period for people with ALS to receive SSDI. People with ALS would receive their SSDI benefits immediately after being approved by the SSA.

If you aren’t already part of our community of 16,000+ ALS Advocates, please join us today in asking your members of Congress to co-sponsor the ALS Disability Insurance Access Act (S.379/H.R.1171) now!

There’s a very strong precedent for this action.

In 2000, The ALS Association won Congressional passage of a bipartisan bill that waived the required two-year waiting period for people with ALS before becoming eligible for Medicare benefits. As a result, people living with ALS can immediately get Medicare as soon as they begin receiving SSDI benefits.

Despite this precedent, passing legislation takes years of advocacy, coalition-building, and asking members of Congress for their support. The ALS Disability Insurance Access Act was first introduced during the 114th Congress, and thanks to the continued advocacy of the ALS community, four senators and 31 representatives sponsored the reintroduction of the bill in the 115th Congress – a testament to the broad support for the legislation.

The impact of advocates on the legislative process can’t be overstated. Throughout 2017, more than 875 advocates sent nearly 1,000 messages to Congress asking them to co-sponsor the bill, resulting in 26 Senators and 109 Representatives signing on by the end of that year.

Even with this momentum, after the start of 2018, only seven new co-sponsors were added to the bill; that is, until the 2018 National ALS Advocacy Conference this past May.

Support for the ALS Disability Insurance Access Act spiked following the 2018 National ALS Advocacy Conference. More than 500 ALS Advocates flooded Capitol Hill on May 15, 2018, to cultivate support for the Act and continued funding for ALS research from Center for Disease Control and Prevention’s National ALS Registry, the Department of Defense’s ALS Research Program, and National Institutes of Health.

Momentum continues to build for waiving the five-month waiting period for people with ALS to receive SSDI benefits. Currently, more than 30 percent of Congress supports this legislation: 32 senators and 148 representatives are co-sponsoring the bill.  That’s more than twice the support the bill received in the 114th Congress in the House of Representatives.

Please ask your members of Congress to co-sponsor the ALS Disability Insurance Access Act (S.379/H.R.1171) today! Help us get people with ALS access to the benefits they deserve right away.

Thank you!

10 thoughts on “Support for ALS Disability Insurance Access Act Grows Following Advocacy Conference”

  1. This needs to be approved! My husband was diagnosed in feb 2018 and passed away may 2018! He received nothing!

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  2. I have Als I am in pain all the time and I can’t walk good I can not talk good it’s a battle for me every single day now I need prayers for this als disease now my name is Roy Roberts

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  3. Please approve this, it is your right to receive benefits you have paid into your entire life. It is inhuman to make anyone wait 5 months, majority of als patients don’t get to receive this. Stop screwing these PEOPLE over, they have enough to deal with, don’t need the added stress

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  4. THIS IS STILL NOT ENOUGH!!! MY PRECIOUS WIFE WAS DENIED ANY BENEFITS FOR THE WHOLE 2 YEARS AFTER SHE WAS DIAGNOSED WITH ALS. SSA EXCUSE WAS THAT BECAUSE SHE WAS DISABLED AT 2 YEARS OLD AND COULDN’T WORK LONG ENOUGH TO EARN ENOUGH “WORK CREDITS”, SHE WAS NOT ENTITLED TO BENEFITS UNDER SSDI OR ANY FEDERAL PROGRAM.
    THIS IS A CRIME IN ITSELF, WHEN AN AMERICAN (BORN IN THE USA) IS DISABLED TO THE POINT THAT THEY CANNOT EARN THE REQUIRED WORK CREDITS, JUST WHAT ARE THEY SUPPOSED TO DO? RUN TO MEXICO AND SNEEK ACROSS THE BORDER SO THEY WILL BE TAKEN CARE OF? THAT’S HOW IT HAS BEEN, UNTIL MR. DONALD TRUMP GOT IN THE WHITEHOUSE, AND NOW HE’S DEMANDING A WALL BE BUILT, AND SIGNING INTO LAW $764 BILLION DOLLARS FOR DEFENSE??? SO THE USA IS ABOUT SPENDING MONEY TO HAVE THE ABILITY TO KILL PEOPLE, BUT WHEN IT COMES TO FUNDING RESEARCH FOR THIS HORRIBLE KILLER DISEASE, ALS, THE FUNDING DROPS TO A DROP IN THE BUCKET. SHAME ON MR. TRUMP, AND SHAME ON EVERY DAMNED LAWMAKER IN THIS ONCE PROUD COUNTRY! IT IS SUCH A SHAME THAT WE DON’T HAVE ANOTHER “FDR” IN THE WHITEHOUSE… AT LEAST HE WAS TRYING TO HELP ALL THE PEOPLE. I, FOR ONE, AM FED UP WITH THE WEALTHY CONTROLLING OUR LIVES. IT IS TRUE – THE RICH GET RICHER, AND THE POOR GET POORER. HOGWASH! LET’S GET PEOPLE IN OFFICE WHO TRULY UNDERSTAND WHERE THE “AVERAGE” AMERICAN IS COMING FROM. I SAY, THE HECK WITH THE WEALTHY, AND IT’S TIME THE PEOPLE TAKE BACK THE CONTROL OF THE USA, AND NOT THE TOP 1% OF THE POPULATION, BUT THE MIDDLE AND LOWER CLASSES. WHAT HAPPENED TO THE AMERICAN PEOPLE? WHY ARE WE ALLOWING OURSELVES TO BE LED AROUND BY OUR NOSES HELPING THE WEALTHY TO GET MORE FAT WITH WEALTH? IT JUST MIGHT BE TIME FOR US TO THINK ABOUT WHY WE HAD A REVOLUTIONARY WAR IN THE FIRST PLACE. ENOUGH IS ENOUGH.

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  5. My sweetheart passed December 2013 after battling AlS for 5 years. Getting the SSDI was great not because of the money, but because of the insurance. The waiting period needs to be waived because most ALS patients don’t live long enough to get all the benefits due them.

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