Effective Dates: 06/15/2022 - Present Previous | Next

TN 8 (07-22)

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

A. Background

Public Law 106-554 amends section 226 of the Social Security Act to waive the 24-month waiting period for Medicare coverage for disabled individuals medically determined to have Amyotrophic Lateral Sclerosis (ALS), better known as Lou Gehrig’s disease. The date of Medicare entitlement is the date of entitlement to disability insurance benefits (DIB), disabled widow(er) benefits (DWB), or childhood disability benefits (CDB) or July 1, 2001, whichever is later. This provision affects both new and current beneficiaries.

B. Policy

Effective July 1, 2001, a disability beneficiary diagnosed with ALS will not have to serve the 24-month Medicare waiting period. The date of entitlement to Medicare is the date of entitlement to disability (DOED) benefits or July 1, 2001, whichever is later. If ALS onset is established later than the month of initial disability onset (i.e., initial onset is based on another disability), but the ALS onset is still within the 24-month Medicare waiting period, Medicare entitlement begins with the ALS onset month or July 1, 2001, whichever is later.

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    The Diagnosis code 3350 is used to identify an ALS diagnosis. This can be the Primary (DIG) or Secondary (SDIG) diagnosis.

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    A new hospital insurance (HI) Period code of "W" will be annotated on the MBR that will indicate these cases as "NO WAITING PERIOD."

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    The supplemental medical insurance (SMI) period code will be "I" (Initial Enrollment Period).

NOTE 1: This legislation only affects Title II and Title XVIII and has no impact on Title XVI entitlement. In addition, this legislation does not include non-ALS anterior horn cell diseases (e.g., Werdnig-Hoffmann disease, spinal muscular atrophy, etc.).

NOTE 2: Additional legislation (Public Law 116-250) eliminated the 5-month DIB entitlement waiting period for claims approved on or after July 23, 2020 based on a diagnosis of ALS. For more information on when the DIB waiting period is not required, see DI 10105.075.

C. Definitions

1. Initial claims

a. Fully Favorable

ALS onset is the same or earlier than the claimant’s alleged onset date for ALS.

b. Partially Favorable

ALS onset is later than the claimant’s alleged onset date for ALS.

c. Unfavorable

The claimant is not found to have ALS.

2. Postentitlement

a. Fully Favorable

ALS onset is the same or earlier than the claimant’s alleged onset date for ALS and within the 24-month Medicare waiting period.

b. Partially Favorable

ALS onset is later than the claimant’s alleged onset date for ALS but still within the 24-month Medicare waiting period.

c. Unfavorable

The claimant is currently entitled based on another disability and is not found to have ALS anytime within the 24-month Medicare waiting period.

NOTE: If the claimant is found disabled due to ALS after expiration of the 24-month Medicare waiting period, the DIG and/or SDIG and the medical re-exam diary are changed to reflect a diagnosis of ALS.

D. Procedure – Initial Claims Processing

1. Control Clerk

Follow normal procedures for systems receipt, transfer, and case closure.

2. Disability Examiner

Follow normal procedures in DI 24580.020 and DI 34001.030 for evaluating disability.

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    If the claimant alleges an ALS onset later than the alleged onset for another disability, develop for a separate ALS onset.

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    If an ALS onset is established later than another disability onset, include remarks in Item 34 of the SSA-831 “ALS onset established MM/DD/YY” to alert the field office (FO) or processing center (PC) that Medicare entitlement begins with the ALS onset month.

E. Procedure – Postentitlement Processing – Claimant Currently Serving 24-Month Medicare Waiting Period Now Alleging ALS

1. Control Clerk

a. Identify

If the claimant alleges ALS and is currently serving the 24-month Medicare waiting period, the FO will flag the case “ALS Case – Expedited Action Needed” and forward to the DDS. The DDS will receive a brown folder with documentation.

b. Receipt

Receipt as a continuing disability review (CDR) case and enter the following information on the National Disability Determination Services System (NDDSS):

NOTE: It is not necessary to retrieve the original folder.

If the field is: Then:

LEX, LUN

Enter the usual information.

AN, BIC, AH, XAH, AD, ZIP

Obtain data from the original SSA-831 (Disability Determination and Transmittal Form), updated information provided by the FO or a query.

TYP

Enter the level CD (Continuing Disability Review) followed by the claim type.

CDT

Enter “13” (Miscellaneous)

SRD

Enter the current date (MMDDYY)

SO

Enter “N”

DO

Enter the office code of the office that sent the folder to the DDS.

c. Transfer

If for any reason the disability examiner determines further development is needed, send the case to the field office (FO) for development, treat the case as a transfer case and input the AH, AN, DEC, DST, SCD, SO, and TYP fields. The DEC is “TR” and the SO is “C.” When the case is returned from the FO, receipt it again. Do not use return (RTN) input procedures when getting a case back from the FO after development.

d. Clearance

Enter the required fields on the NDDSS as follows:

(SM 06001.499 – SM 06001.502 Data Input Screen [D833].)

If the field is: Then Enter:

BFD

“D”

DEC

“CO”

DIA

“MR” and (MMDDYY)

DSI

“P33507”

DST

The destination code

ESD

Examiner signature date (MMDDYY)

NP

“N” if DDS prepares notice

R2

“30” or "46"

SCD

Date case leaves DDS (MMDDYY)

SO

“C”

WRM

“21”

2. Disability Examiner

a. Identify

Post-entitlement ALS allegations will be forwarded from the FO to the DDS in a brown folder with a coversheet flag, “ALS Case - Expedited Action Needed - (P.L. 106-554 waives 24-month Medicare waiting period for Amyotrophic Lateral Sclerosis.”) (See DI 23580.002 Exhibit 1 for coversheet.) The coversheet will provide the first month and last month of the Medicare waiting period. The folder will contain:

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    SSA-795 “Statement of Claimant or Other Person” (see DI 23580.003 Example 1). The SSA-795 shows the alleged onset date of ALS, and the name, address, telephone number and fax number of each medical source for ALS, effective with the ALS alleged onset date (AOD), and the date the claimant first saw each medical source for ALS.

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    SSA-827s “Authorization to Disclose Information to the Social Security Administration.”

b. Process

Follow normal procedures in DI 24580.020 (Evaluation of Amyotrophic Lateral Sclerosis) and DI 22501.000 (Case Development Procedures) for evaluating medical evidence to make an ALS onset determination.

NOTE: Prior to Public Law (P.L.) 106-554 and the resulting regulatory change dated August 2003, a meets, equals, medical/vocational or combination of these listing criteria could result in an ALS allowance. Effective August 28, 2003, the revised ALS listing allows a finding of disability for an individual with medical evidence showing he or she has ALS, (i.e., if a diagnosis of ALS is properly confirmed the claimant will always meet the listing). In addition, the revised ALS listing in DI 34001.030 provides a more comprehensive description of this impairment.

If the diagnosis is not properly confirmed the claimant's total neurological impairment could potentially meet or equal another listing, or an allowance could be correct using the medical-vocational factors. However, these cases are not covered by P.L. 106-554 and do not qualify for waiver of the 24-month Medicare waiting period.

c. SSA-833 Completion - Fully Favorable and Partially Favorable

Complete the following entries for fully favorable and partially favorable ALS determinations:

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    Item 10 - Check block D “OTHER.”

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    Item 12 - Enter Reason for Continuance Code “30” and Medical Listing Code “11.10”

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    Item 20 - Enter WRM code 21 (defined as “OTHER”).

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    Item 21 - Enter Primary Diagnosis of "Amyotrophic Lateral Sclerosis," Body System code of "11," and Diagnosis code of "3350." Enter the Secondary Diagnosis, Body System code, and Diagnosis code from the Primary Diagnosis of the previous favorable determination or decision.

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    Item 23A-C - Enter 7-year diary coding

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    Item 24 - Enter remark "ALS Established Beginning (MMDDYY)." For partially favorable determinations, add “ALS notice sent” in Item 24.

Send the completed SSA-833 in the brown folder with the ALS coversheet flag to the processing center (PC) for the necessary MACADE input. For PC jurisdiction, see GN 01070.245.

Also send a copy of the SSA-833 to the FO as notification that the DDS determination is complete, and the FO can close out the outstanding Modernized Development Worksheet (MDW) ALS control.

d. SSA-833 Completion - Unfavorable Determinations

If the claimant is not found to have ALS, complete the following entries:

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    Item 10 - Check block D “OTHER.”

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    Item 12 – Enter Reason for Continuance Code “46” and enter the Medical Listing Number of the original (non-ALS) impairment, if applicable (i.e., if original allowance not based on medical/vocational factors).

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    Item 20 - Enter WRM code 21 (defined as “OTHER”).

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    Item 21 - Enter the Primary and Secondary Diagnosis, Body System codes, and Diagnosis codes from the previous favorable determination or decision.

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    Item 23 A-C - Enter the same diary category and date already on file from the previous favorable determination or decision. The diary should be set to mature from the most recent full medical determination or decision date, not from the date of the ALS post-entitlement determination.

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    Item 24 - Enter remark "ALS Onset Not Established – Waiver of Medicare Waiting Period Denied. ALS notice sent.” (See DI 23580.005 Exhibit 3 Prototype DDS and DI 23580.007 Exhibit 5 Non-Prototype DDS for notice.)

Send the completed SSA-833 in the brown folder with the ALS coversheet flag to the FO for the appeals period.

If the claimant is found to have ALS after the 24-month Medicare waiting period has expired, complete the following entries:

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    Item 10 - Check block D “OTHER.”

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    Item 12 - Enter Reason for Continuance Code “30” and Medical Listing Code “11.10”

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    Item 20 - Enter WRM code 21 (defined as “OTHER”).

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    Item 21 - Enter Primary Diagnosis of "Amyotrophic Lateral Sclerosis," Body System code of "11," and Diagnosis code of "3350." Enter the Secondary Diagnosis, Body System code, and Diagnosis code from the Primary Diagnosis of the previous favorable determination or decision.

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    Item 23A-C - Enter 7-year diary coding

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    Item 24 - Enter remark "ALS Onset Not Within 24-month Medicare Waiting Period. ALS notice sent.”

Send the completed SSA-833 in the brown folder with the ALS coversheet flag to the processing center (PC). For PC jurisdiction, see GN 01070.245. Instruct the PC that the 24-month Medicare waiting period is not waived, but the DIG and/or SDIG must be changed to 3350 and the medical re-exam diary must be changed to 7 years.

Also send a copy of the SSA-833 to the FO as notification that the DDS determination is complete, and the FO can close out the outstanding Modernized Development Worksheet (MDW) ALS control.

e. Notices – Processing Instructions

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    Fully Favorable Determination

    If a fully favorable determination is made, a Medicare entitlement notice will be sent by the processing center (PC) upon completion of their action. No DDS notice is necessary.

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    Partially Favorable Determination

    DI 23580.006 Exhibit 4 provides the DDS post-entitlement notice for partially favorable determinations (i.e., onset of ALS is established later than alleged but within the 24-month Medicare waiting period). This exhibit notice designates where the personalized disability language must be included. The PC will issue the Medicare notice.

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    Unfavorable Determination

    DI 23580.007 Exhibit 7 provides the DDS post-entitlement notice for unfavorable determinations. This exhibit notice designates where the personalized disability language must be included.

    Page 1 of the notice, third paragraph, second fill-in, select “A” if the claimant is determined to not have ALS; select “B” if the claimant is determined to have ALS after expiration of the 24-month Medicare waiting period established by the original (non-ALS) onset.

F. Procedure – Reconsiderations

If the claimant files a reconsideration on a partially favorable or unfavorable determination, follow normal reconsideration procedures. See DI 23580.008 Exhibit 6 for Reconsideration Notice – Partially Favorable Determination and DI 23580.009 Exhibit 7 for Reconsideration Notice – Unfavorable Determination.

NOTE: Although post-entitlement ALS cases are receipted as continuing disability reviews (CDRs) and an SSA-833 is completed, the claimant is not entitled to Disability Hearings Office (DHO) appeal rights, (i.e., no face-to-face hearing is required) because no cessation or adverse reopening is involved.

G. Procedure - Handling Inquiries

If you receive questions about why the 24-month or the 5-month waiting period waiver does not cover other impairments, explain that currently the law only applies to individuals diagnosed with ALS. Do not attempt to explain why other impairments are not included.

To Link to this section - Use this URL:
http://policy.ssa.gov/poms.nsf/lnx/0423580001
DI 23580.001 - Amyotrophic Lateral Sclerosis (ALS) – Medicare and Five-Month Waiting Period Waived – Disability Determination Services (DDS) - 06/15/2022
Batch run: 09/24/2025
Rev:06/15/2022