Press Release

Rep. Cuellar Votes for ALS Disability Insurance Access Act

Legislation eliminates SSDI 5-month wait period for ALS patients

Washington | Charlotte Laracy, DC Press Secretary (202-226-1583); Alexis Torres, District Press Secretary (956-286-6007), December 8, 2020

Washington, D.C.—Congressman Henry Cuellar (TX-28) voted and helped pass the ALS Disability Insurance Access Act of 2019. This legislation will end the 5-month waiting period requirement for Social Security Disability Insurance (SSDI) benefits, allowing anyone diagnosed with ALS to access their benefits upon diagnosis. This bill passed the House and Senate and now goes to the President for his signature.

“It is crucial that ALS patients are approved for disability benefits and receive the treatment they need as soon as possible because of how quickly the disease tends to progress,” said Congressman Cuellar. “This bipartisan legislation will remove bureaucratic barriers and provide timely access to SSDI that they deserve. As a member of the ALS Caucus, I am committed to helping ALS patients and their families by funding research programs that help create new treatments and will eventually find a cure for this disease.”

"ALS is among the most devastating health challenges we face. Thanks to Congressman Cuellar and the bipartisan efforts of the Congressional ALS Caucus, Americans with ALS will have more immediate access to critical disability benefits. ALS moves fast, robbing people of the ability to move, speak, swallow, and breathe. This bill allows us to keep pace with the demands of the illness. The next step will be outrunning ALS, as we discover better treatments and a cure together. This is true advocacy," said Valerie Estess, Co-Founder & Director of Research at Project ALS.

“ALS has impacted the lives of many in South Texas. Removing the 5 month waiting period for SSDI benefits will help families focus their attention on helping the person they care about adjust to the many challenges caused by living with ALS.  Hopefully there will soon be a cure, but until then Henry's work in helping pass this bill will have real value for many,” said Memo Trevino.

Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig’s disease, is a neurodegenerative disease impacting the ability of the brain to control muscle movements. People with ALS progressively lose the ability to speak, walk, eat and breathe. There is no cure for ALS and it affects more than 5,000 people each year.

The SSDI program pays a monthly benefit to qualifying individuals who are younger than the retirement age and have accrued a certain amount of credits based on their earnings and Social Security tax payments. Eligible recipients generally must wait five months before receiving payments. The intended purpose of a five-month waiting period for SSDI benefits is to allow temporary conditions to reverse. However, due to its progressive symptoms, some ALS patients lose their fight with the disease before ever receiving benefits. The bill would waive the waiting period for individuals with ALS, so that payments would begin the first full month that they have the disease.

Watch a video of Congressman Cuellar speaking about the ALS Disability Insurance Access Act of 2019 here.