PROGRAM OPERATIONS MANUAL SYSTEMPart DI – Disability InsuranceChapter 235 – Specific Case InstructionsSubchapter 80 – Amyotrophic Laterial Sclerosis (ALS) Cases - Medicare Waiting Period Waived - DDSTransmittal No. 2, 04/22/2021
This is a Quick Action Transmittal to conform to legislation. These revisions do not create new policy.
On December 22, 2020, the ALS Disability Insurance Access Act of 2019 became law (PL 116-250). This law eliminated the 5-month waiting period for DIB claimants with ALS who file a disability claim on or after December 23, 2020. On March 23, 2021, the President signed into law a technical amendment to the ALS Disability Insurance Access Act of 2019 (Pub. L. 117-3). The amendment makes the elimination of the 5-month waiting period applicable to DIB claims based on ALS that we approved on or after July 23, 2020.
Summary of Changes
DI 23580.001 Amyotrophic Lateral Sclerosis (ALS) – Medicare Waiting Period Waived – Disability Determination Services (DDS)
We added a second note about legislation to subsection B.
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.
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.
The Diagnosis code 3350 is used to identify an ALS diagnosis. This can be the Primary (DIG) or Secondary (SDIG) diagnosis.
A new hospital insurance (HI) Period code of "W" will be annotated on the MBR that will indicate these cases as "NO WAITING PERIOD."
The supplemental medical insurance (SMI) period code will be "I" (Initial Enrollment Period).
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.).
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.
ALS onset is the same or earlier than the claimant’s alleged onset date for ALS.
ALS onset is later than the claimant’s alleged onset date for ALS.
The claimant is not found to have ALS.
ALS onset is the same or earlier than the claimant’s alleged onset date for ALS and within the 24-month Medicare waiting period.
ALS onset is later than the claimant’s alleged onset date for ALS but still within the 24-month Medicare waiting period.
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
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.
Follow normal procedures for systems receipt, transfer and case closure.
Follow normal procedures in DI 24580.020 and DI 34001.030 for evaluating disability.
If the claimant alleges an ALS onset later than the alleged onset for another disability, develop for a separate ALS onset.
If an ALS onset is established later than another disability onset, include remarks in Item 34 of the SSA-831-U3 “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.
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.
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.
Enter the usual information.
AN, BIC, AH, XAH, AD, ZIP
Obtain data from the original SSA-831-U3 (Disability Determination and Transmittal Form), updated information provided by the FO or a query.
Enter the level CD (Continuing Disability Review) followed by the claim type.
Enter “13” (Miscellaneous)
Enter the current date (MMDDYY)
Enter the office code of the office that sent the folder to the DDS.
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.
Enter the required fields on the NDDSS as follows:
(SM 06001.499 – SM 06001.502 Data Input Screen [D833].)
“MR” and (MMDDYY)
The destination code
Examiner signature date (MMDDYY)
“N” if DDS prepares notice
Date case leaves DDS (MMDDYY)
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:
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.
SSA-827s “Authorization to Disclose Information to the Social Security Administration.”
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.
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. E ffective
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 prope rly
confirmed the claimant will
. In addition, the revised ALS listing
in DI 34001.030 provides a more comprehensive
description of this impairment.
I f the diagnosis is not properly con firmed 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
Complete the following entries for fully favorable and partially favorable ALS determinations:
Item 10 - Check block D “OTHER.”
Item 12 - Enter Reason for Continuance Code “30” (or Code “31” for DWB case) and Medical Listing Code “11.10”
Item 20 - Enter WRM code 21 (defined as “OTHER”).
Item 21 - Enter Primary Diagnosis of "Amyotrophic Lateral Sclerosis," Body System code of "11," and Diagnosis code of "3350."
Item 23A-C - Enter 7-year diary coding
Item 24 - Enter remark "ALS Established Beginning (MMDDYY)." For partially favorable determinations, add “ALS notice sent” in Item 24.
Send the completed SSA-833-U3 in the brown folder with the ALS coversheet flag to the processing center (PC) for the necessary MACADE input.
Also send a copy of the SSA-833-U3 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.
If the claimant is
found to have ALS,
complete the following entries:
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).
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-U3 in the brown folder with the ALS coversheet flag to the FO for the appeals period.
If the claimant is found to have ALS
Medicare waiting period has expired
complete the following entries:
Item 12 - Enter Reason for Continuance Code “30” and Medical Listing Code “11.10”
Item 24 - Enter remark "ALS Onset Not Within 24-month Medicare Waiting Period. ALS notice sent.”
Send the completed SSA-833-U3 in the brown folder with the ALS coversheet flag to the processing center (PC). Instruct the PC that the 24-month Medicare waiting period is
waived, but the DIG and/or SDIG must be changed to 3350 and the medical re-exam diary must be changed to 7 years.
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.
Partially Favorable Determination
DI 23580.004 Exhibit 2 provides the Disability Redesign Prototype DDS post-entitlement notice for partially favorable determinations (i.e., onset of ALS is established later than alleged but still within the 24-month Medicare waiting period). DI 23580.006 Exhibit 4 provides the Non-Prototype DDS post-entitlement notice for partially favorable determinations. These Exhibit notices designate where the personalized disability language must be included. The PC will issue the Medicare notice.
DI 23580.005 Exhibit 3 provides the Disability Redesign Prototype DDS post-entitlement notice for unfavorable determinations, explaining the evidence in file does not support the existence of ALS and, therefore, the claimant must serve a 24-month waiting period for Medicare entitlement.
NOTE: Page 1 of the notice, third paragraph, second fill-in, select “A” if the claimant is not determined to 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.
DI 23580.007 Exhibit 5 provides the Non-Prototype DDS post-entitlement notice for unfavorable determinations. These Exhibit notices designate where the personalized disability language must be included.
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. (These Exhibit notices are provided for those DDSs not participating in the Disability Redesign Prototype.)
NOTE: Although post-entitlement ALS cases are receipted as continuing disability reviews (CDRs) and an SSA-833-U3 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.
If you receive questions about why the 24-month 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 a re not included.