The ALS Disability Insurance Access Act of 2019 (S. 578)

The ALS Disability Insurance Access Act of
2019 (S. 578)

December 7, 2020
On December 2, 2020, the Senate passed the ALS Disability Insurance Access Act of 2019 (S. 578),
which would amend the Social Security Act to eliminate the five-month waiting period for Social Security
Disability Insurance (SSDI) benefits for disabled workers with amyotrophic lateral sclerosis (ALS). This
Insight discusses the waiting period for SSDI and congressional action on S. 578.
SSDI provides benefits to non-elderly disabled workers and their eligible dependents. To qualify,
individuals must have worked for a sufficient period in Social Security–covered employment and be
unable to perform substantial work due to any medical y determinable physical or mental impairment that
is expected to last for at least 12 months or result in death. Disabled workers are automatical y entitled to
Medicare after 24 months of entitlement to SSDI. In October 2020, SSDI provided benefits to 8.2 mil ion
disabled workers and 1.5 mil ion dependents.
Five-Month Waiting Period
Disabled workers must satisfy a five-month waiting period before they become entitled to cash benefits.
The waiting period ends five full consecutive calendar months after a claimant’s disability onset date,
which is the first day a claimant meets (1) the definition of disability under Title II of the Social Security
Act and (2) al other entitlement requirements. For example, if a claimant’s onset date were April 11, the
waiting period would begin on May 1 and would end on September 30. Under current law, there are no
impairment-related exceptions to the five-month waiting period for disabled workers with certain medical
conditions, even those considered terminal.
Rationale for the Waiting Period
Since SSDI was enacted in 1956, disabled workers have been required to serve a non-compensatory
waiting period. Original y, lawmakers required disabled workers to serve a six-month waiting period,
which was the standard used by most private insurance companies. Lawmakers later reduced the
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requirement to five months in 1972 to address concerns that the waiting period caused financial hardship
for some low-wage workers.
Lawmakers required a waiting period primarily for three reasons. First, it was viewed as an
administratively simple method for screening temporary impairments from long-term ones. Second, the
forgoing of earnings and lack of benefits during the waiting period was viewed as reducing the
attractiveness of SSDI, such that some marginal y disabled workers who could otherwise work would be
discouraged from applying for benefits. Third, it reduces cost to the program by (1) preventing the
payment of benefits to claimants who medical y improve or die during the waiting period and (2)
reducing the number of months for which benefits are payable over the beneficiary’s lifetime.
ALS and the SSDI Application Process
ALS, also known as Lou Gehrig’s disease, is a progressive neuromuscular disease that attacks the nerve
cel s (neurons) in the brain and spinal cord responsible for controlling voluntary muscles. In 2015, about
16,600 people in the United States had ALS, and approximately 5,000-6,000 new cases occur each year.
In December 2015, there were 5,666 disabled-worker beneficiaries with ALS in current-payment status.
There is no known cure for ALS, and most patients with the disease die within two to five years of
Under its Compassionate Al owances (CAL) initiative, the Social Security Administration (SSA)
expedites claims involving certain impairments that invariably meet SSDI’s disability standard, including
ALS. The average processing time for CAL claims is 39 days, compared with 110-120 days for al initial
disability claims. However, this fast-track process has no effect on the five-month waiting period. Thus,
upon receiving an award notice from SSA, most disabled workers with ALS must continue to wait the
remainder of the five-month period before becoming entitled to SSDI.
SSDI beneficiaries with ALS are exempt from the 24-month waiting period for Medicare. Disabled
workers with ALS are automatical y entitled to Medicare beginning with the month in which they become
entitled to SSDI (i.e., the month following the end of the five-month waiting period).
ALS Disability Insurance Access Act of 2019 (S. 578)
S. 578 would amend Title II of the Social Security Act to specify that an individual who meets the
requirements for disabled-worker benefits and who is medical y determined to have ALS shal be entitled
to such benefits beginning with the first month during al of which the individual is under a disability. In
effect, the bil would eliminate the five-month waiting period for disabled workers with ALS. The bil ’s
provisions would be effective for applications filed after the date of enactment.
In 2018, SSA estimated that if the bil ’s provisions were effective beginning in 2019, SSDI benefit outlays
would have increased by $200.3 mil ion through 2027. This estimate does not include additional costs
stemming from the acceleration of Medicare entitlement for disabled workers with ALS.
Congressional Action on S. 578
Senator Sheldon Whitehouse introduced S. 578 on February 27, 2019. Representative Seth Moulton
introduced a companion bil , H.R. 1407, on the same day.
On December 2, 2020, the Senate proceeded with consideration of S. 578. Senator Mitch McConnel
offered an amendment on behalf of Senator Charles Grassley to increase the Social Security overpayment
collection threshold from $10 to 10% of benefits, which was a proposal in the FY2021 President’s
budget. Senator Grassley noted that the amendment was designed to offset the bil ’s cost as wel as future

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from similar waivers that lawmakers might later provide for other impairments. The amendment was
defeated by a vote of 48-49. The Senate then passed S. 578 by a vote of 96-1.
Senator Tom Cotton stated that the bil would ensure that ALS patients “don’t have to worry about
benefits and can focus instead on the things that real y matter during what could be their final months on
Earth.” Senator Whitehouse noted it “made no sense” to require ALS patients to wait five months for
SSDI, a period during which “support makes the most difference in terms of the quality of life that
One Senator voted against the bil . In justifying his vote, Senator Mike Lee stated he supported
eliminating the waiting period for ALS patients, but he believed the bil ’s provisions should have been
extended to individuals with other incurable and fatal diseases, some of which have lower average life
expectancies than ALS.
The House is scheduled to vote on the bil on December 8, 2020.

Author Information

William R. Morton

Analyst in Income Security

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