Effective Dates: 08/01/2023 - Present Previous | Next

TN 12 (08-23)

DI 24580.020 Evaluation of Amyotrophic Lateral Sclerosis (ALS)

CITATIONS:

Appendix 1 to Subpart P of Part 404, Section 11.00 20 CFR 416.934

A. What is ALS?

ALS, sometimes called Lou Gehrig’s disease, is a progressive, invariably fatal neurological disease that attacks the nerve cells (motor neurons) responsible for controlling voluntary muscles. The sequence of emerging symptoms and the rate of disease progression and related limitations vary from person to person. Eventually, however, all muscles under voluntary control are affected and the person loses the ability to move their arms and legs, and to swallow, speak, and breathe.

There is no cure for ALS. Treatments such as medications, breathing support, speech and physical therapy, and nutritional support can slow disease progression and manage symptoms.

 

B. How do we evaluate ALS?

1. Evidence

We establish ALS as a medically determinable impairment based on a documented diagnosis of ALS. We require laboratory testing to establish the diagnosis when the clinical findings of upper and lower motor neuron disease are not present in three or more regions. In addition, evidence of progression of the disease must be documented through clinical or electrophysiological changes over time. Further, there must be no neuroimaging or clinical laboratory evidence indicating the presence of another clinical disease that might produce these abnormal findings. Electrophysiological studies, such as nerve conduction velocity (NCV) studies and electromyography (EMG), may support a diagnosis of ALS; however, we will not purchase these studies.

2. Listing 11.10

Any person with a documented diagnosis of ALS established by clinical and laboratory findings as described in 11.00O will be found disabled. To meet the listing, the diagnosis must be documented by generally accepted methods consistent with the prevailing state of medical knowledge and clinical practice. The existence of ALS is not established by any specific, single test. The diagnosis of ALS is based on history, clinical findings consistent with the diagnosis and electrophysiological and neuroimaging studies to rule out other impairments that may cause similar signs and symptoms. The diagnosis may also be supported by EMG or NCV studies, but these tests may also be negative or only suggestive of the diagnosis. A negative test result will not preclude a diagnosis of ALS if other clinical findings are present that are consistent with ALS and other potential disorders have been ruled out. The gradual onset of ALS can sometimes delay a definitive diagnosis. For neurological disorders listings for adults, see DI 34001.030.

C. How do we evaluate motor neuron disorders, other than ALS?

We evaluate motor neuron disorders such as progressive bulbar palsy, primary lateral sclerosis (PLS), and spinal muscular atrophy (SMA) under listings 11.22 and 111.22. These disorders are progressive neurological disorders that destroy the cells that control voluntary muscle activity, such as walking, breathing, swallowing, and speaking. We evaluate the effects these disorders have on physical and mental functioning, as these disorders affect motor functioning, bulbar and neuromuscular functioning, and oral communication.

 

D. Special Considerations

  1. 1. 

    Presumptive Disability

    For Title XVI applicants an allegation of ALS will warrant a finding of presumptive disability as described in DI 23535.000.

  2. 2. 

    Compassionate Allowance (CAL) condition

    ALS is a (CAL) condition. Fast-Track processing applies to all CAL cases, see DI 23022.100 Amyotrophic Lateral

    Sclerosis (ALS)

  3. 3. 

    Elimination of Waiting Periods

    We waive the 5-month waiting period for disability insurance benefits (DIB) and the 24-month waiting period for Medicare coverage

    for individuals found disabled due to ALS. We do not waive these waiting periods for individuals we

    find disabled due to motor neuron disorders other than ALS. We use the diagnosis code 3350 (either

    primary or secondary) to identify a diagnosis of ALS.

a. In July 2001, Congress eliminated the 24- month Medicare waiting period for individuals found disabled due to

ALS. This enables a claimant to get the medical help that is required for this disease as soon as possible. For

more information about waiver of the 24-month Medicare waiting period, see DI 23580.001, Amyotrophic Lateral Sclerosis (ALS)-Medicare

Waiting Period Waived – Disability Determination Services (DDS).

b. In December 2020, the President signed the ALS Disability Insurance Access Act of 2019 (Public Law (PL)

116-250) into law, which eliminated the DIB 5-month waiting period for individuals found disabled due to ALS who filed a claim for DIB on or after December 23, 2020.

c. In March 2021, the President signed PL 117-3 into law, which amended the ALS Disability Insurance Access

Act of 2019 to eliminate the DIB 5- month waiting period for individuals with ALS who the Social Security Administration (SSA) approved for benefits

on or after July 23, 2020. Therefore, DIB awardees with ALS who were approved for benefits on or after July 23,

2020, are no longer subject to the 5-month waiting period to receive DIB. For purposes of applying the 5-month

waiting period exemption, SSA considers the date of the Notice of Award to be the date on which SSA approves the claim.

 

 

E. References

  • •

    DI 10105.075: When the Five Month Waiting Period is Not Required

  • •

    DI 23022.100: Amyotrophic Lateral Sclerosis (ALS)

  • •

    DI 23580.001: Amyotrophic Lateral Sclerosis (ALS)-Medicare Waiting Period Waived – Disability Determination Services (DDS)

  • •

    DI 23535.000: Presumptive Disability/Presumptive Blindness (PD/PB) Cases

  • •

    DI 26510.015G: List of Impairment Codes

  • •

    DI 34001.030: Neurological Disorders

 

To Link to this section - Use this URL:
http://policy.ssa.gov/poms.nsf/lnx/0424580020
DI 24580.020 - Evaluation of Amyotrophic Lateral Sclerosis (ALS) - 08/01/2023
Batch run: 02/27/2025
Rev:08/01/2023