Bill Easing Access to Disability Benefits for ALS Patients Passes US Senate

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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The U.S. Senate has passed a bill that may make it easier for people with amyotrophic lateral sclerosis (ALS) to access disability benefits.

The proposed legislation, the ALS Disability Insurance Access Act of 2019, still must be approved by the U.S. House of Representatives.

If enacted, the legislation would eliminate a mandatory five-month waiting period for people with medically determined ALS to receive Social Security Disability Insurance (SSDI). The bill was introduced by the founding members of the Senate ALS Caucus, Sheldon Whitehouse (D-R.I.) and Tom Cotton (R-Ark.).

“Americans [living with] ALS shouldn’t have to wait for assistance … and now they won’t have to. By waiving the statutory disability benefits waiting period, our bill makes support available to those suffering from this terrible disease much faster,” Cotton said in a press release.

“I’m grateful to my Senate colleagues for supporting this important legislation, and I strongly urge the House to do the same,” Cotton added.

The statutory purpose of the five-month waiting period is to allow temporary conditions to reverse. However, because there currently are no treatments to halt the disease’s progression, many people with ALS will die before being eligible for the benefits. The bill is expected to lessen some of the financial hardship that accompanies an ALS diagnosis.

“Over the course of a five-month waiting period, many people living with ALS will experience serious loss of ability and will have incurred significant expenses for care and treatment,” said Calaneet Balas, president and CEO of The ALS Association, adding, “They urgently need support.”

ALS is a neurodegenerative disease affecting the ability of the brain to control muscle movements. Individuals with ALS progressively lose the ability to speak, walk, and breathe.

“Allowing Americans who face this difficult diagnosis to immediately receive the benefits they have earned is a simple act of humanity that will make life easier for ALS patients and their families,” Whitehouse said. “I hope the House will act quickly so we can finally eliminate this bureaucratic obstacle.”

Passing this legislation has been a priority for the Senate ALS Caucus, which was founded earlier this year. The bipartisan caucus is co-chaired by Sens. Chris Coons (D-Del.) and Mike Braun (R-Ind.).

“Speedy access to support programs like SSDI after a diagnosis is essential – and one of the priorities we set when we launched our bipartisan caucus earlier this year. We must continue to build on this progress to make life easier for ALS patients and their loved ones,” Coons said.

Braun said the Senate approval was a win for people with ALS and their families.

“The financial burden of ALS is staggering and time is of the essence for those diagnosed with ALS,” Braun said. “The ALS Disability Insurance Access Act is a step in the right direction toward providing timely access to SSDI benefits to ALS patients.”

The legislation was met positively by organizations that represent the ALS community.

“We are grateful to Senators Braun, Coons, Whitehouse and Cotton for driving this legislation forward,” said Danielle Carnival, CEO of I AM ALS. “To the thousands of advocates who drove this bill forward, you are our hope. You are changing history one step at a time.”

Balas called on the House to move quickly toward a vote.

“The ALS Association and ALS community urges the House to immediately pass the ALS Disability Insurance Access Act, which just passed the Senate,” Balas said.

“Our community has worked tirelessly with congressional champions over the years laying the groundwork for this bill,” she added.