Congress Eliminates SSDI Waiting Period for People with ALS

When the Social Security Administration (SSA) approves applicants for Social Security Disability Insurance (SSDI) benefits, it imposes a five-month waiting period between the onset of the applicant’s disability and when they can begin receiving benefits. Now, thanks to legislation enacted at the end of the Trump Administration, people with amyotrophic lateral sclerosis (ALS) will be exempted from that waiting period.

“Americans suffering from ALS shouldn’t have to wait for assistance, especially given their tragically short life expectancy—and now they won’t have to,” Sen. Tom Cotton (R-Ark.) said in a news release. “By waiving the statutory disability benefits waiting period, our bill makes support available to those suffering from this terrible disease much faster.”

ALS, better known as Lou Gehrig’s disease, is a progressive neurodegenerative illness that affects nerve cells in the brain and spinal cord. It is usually fatal within two to five years, and sufferers frequently must quit their jobs, and their caregivers often do so as well. There is currently no cure.

Due to the five-month waiting period for SSDI benefits, even when a person is quickly approved for SSDI, there may be a lag before they begin receiving payments. Likewise, if a person is later approved and the SSA pays retroactive benefits, they will not be compensated for the initial five months after the onset of their disability.

Although SSDI recipients are automatically eligible for Medicare benefits, the SSA also imposes a two-year waiting period between when recipients are approved and when they can start receiving Medicare. Congress previously waived the two-year Medicare waiting period for people with ALS and with end-stage renal disease.

Under the bipartisan ALS Disability Insurance Access Act, signed into law by former President Trump on December 22, the five-month waiting period for ALS recipients is now eliminated. The House of Representatives voted unanimously to pass the bill and the Senate voted 96-1 in favor.

The bill, first introduced in its initial form in 2016, is the product of more than a decade of advocacy by disability rights groups.

“This legislation eliminates an unnecessary burden placed on the shoulders of people confronting a cruel, expensive and burdensome disease, said Calaneet Balas, president and CEO of the ALS Association, in Sen. Cotton's release. “It is a testament to the tenacity and perseverance of ALS advocates who laid the groundwork for victory through the hard work of building a coalition of legislative champions across partisan lines.”

If approved, a broader bill introduced in July 2020, known as the Stop the Wait Act, would end both waiting periods for all SSDI recipients, regardless of their affliction.

“Can you imagine, one by one, people with these conditions trying to find people in the House and in the Senate to champion the bill?” said Carol Harnett, president of the Council for Disability Awareness.

The text of the ALS Disability Insurance Access Act, which was co-sponsored by Sen. Sheldon Whitehouse (D-R.I.), can be read here.