Effective Dates: 03/06/2025 - Present Previous | Next

TN 2 (03-25)

DI 45605.001 Amyotrophic Lateral Sclerosis - Waiting Periods Waived - Processing Center

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) based on a diagnosis of ALS, or July 1, 2001, whichever is later. This provision affects both new and current beneficiaries.

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.

B. Policy

Effective July 1, 2001, a disability beneficiary diagnosed with ALS will not have to serve the 24-month Medicare waiting period. Effective July 23, 2020, the 5-month DIB entitlement waiting period is also waived for claimants with ALS.

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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    Use the diagnosis code 3350 to identify an ALS diagnosis. This can be the Primary (DIG) or Secondary (SDIG) diagnosis.

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    Annotate a new hospital insurance (HI) period code of "W" on the Master Beneficiary Record (MBR) to designate these cases as "NO WAITING PERIOD."

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

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

 

C. Definitions - Initial claims for the purpose of waiving the waiting period based on ALS

1. Fully Favorable

ALS onset is the same or earlier than the claimant’s alleged onset date for ALS, see DI 25501.280 A2.

2. Partially Favorable

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

3. Unfavorable

DDS finds the claimant does not have ALS.

D. Definitions - Post-entitlement allegation of ALS

1. Fully Favorable

The claimant is currently entitled based on another disability and the established ALS onset is the same or earlier than the claimant’s alleged onset date for ALS and within the 5-month DIB or 24-month Medicare waiting period.

2. Partially Favorable

The claimant is currently entitled based on another disability and the established ALS onset is later than the claimant’s alleged onset date for ALS but still within the 5-month DIB or 24-month Medicare waiting period.

3. Unfavorable

The claimant is currently entitled based on another disability and is not found to have ALS anytime within the 5-month DIB or 24-month Medicare waiting period.

NOTE: The medical determination or decision finds the claimant disabled due to ALS after expiration of the 5-month DIB or 24-month Medicare waiting period, change the DIG and the medical re-exam diary to reflect a diagnosis of ALS.

E. Procedure – Initial claims processing

For initial claims processing see DI 11036.001B.

For the disability determination services (DDS) processing instructions, see DI 23580.001.

ALS is a compassionate condition which should be flagged for expedited processing, see DI 23022.100.

F. Procedure - Post-entitlement processing – Claimant currently within Serving 24-month Medicare waiting period who is now alleging ALS

1. General post entitlement processing

Send all fully favorable and partially favorable determinations that are EDCS exclusions from the DDS to the PC in a brown folder with an ALS coversheet (as exhibited in DI 11036.002) to clearly identify the case. The brown folder must include the completed form SSA-833-U3 establishing ALS onset during the applicable waiting period.

Send an unfavorable determination due to ALS after expiration of the 5-month DIB and 24-month Medicare waiting period from the DDS to the PC for Manual Adjustment Credit and Award Data Entry (MACADE) input to update the DIG and SDIG to 3350 and the medical re-exam diary to 7 years to reflect a disability of ALS, see DI 23580.001

Send an unfavorable determination when the claimant is not found to have ALS from the DDS to the field office (FO) for the appeals period.

2. Receipt coding

Receipt ALS cases in which the diagnosis changed during the Medicare waiting period as continuing disability review (CDR) cases;

Enter CDR cases in the PC using the designations Type of Event Level (TOEL) 1 HISMI and TOEL 2 MISC ; then

Forward the cases to the claims authorizer.

3. Claims authorizer (CA)

a. Fully Favorable and partially favorable ALS determinations

  • •

    If the ALS onset date is later than the original disability onset date on the MBR, input special message “ALS onset date MM/DD/YY - Medicare entitlement begins MM/YY.” Query the disability control file (DCF) to determine the DIG and SDIG codes.

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    If the DIG or SDIG code on the DCF is 3350 (ALS), prepare an SSA-559 routing form to reflect the changed entitlement based on the ALS determination (e.g., DOED and Medicare entitlement month equal to ALS onset month) and then forward the case to the benefit authorizer (BA) for MACADE processing.

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    If the DIG or SDIG code on the DCF is other than code 3350 (ALS), prepare an SSA-559 routing form to reflect any changed Medicare and DIB entitlement (i.e., DOED and Medicare entitlement month equal to ALS onset month). Forward the case to the Disability Processing Branch Specialist (DPS) or the disability examiner (DE), as appropriate. Instruct the DPS/DE to correct the DIG and SDIG to 3350 on the DCF, and send the case to the benefit authorizer (BA) for the necessary Medicare and DIB entitlement MADCAP action.

b. Unfavorable ALS determinations

Consider claimants found to have ALS after the 5-month DIB and 24-month Medicare waiting period has expired as unfavorable ALS determinations.

The DDS sends these unfavorable determinations to the PC to update diagnosis and medical diary coding only, (waiver of the Medicare waiting period does not apply). No PC notice is required.

  • •

    If the DIG and SDIG code on the DCF is 3350 (ALS), forward to the benefit authorizer (BA) via SSA-559 routing form and instruct the BA to update the DIG snd SDIG to 3350 (ALS) and the medical re-exam diary to 7 years.

  • •

    If the DIG and SDIG code on the DCF is other than 3350 (ALS), forward the case to the Disability Processing Branch Specialist (DPS) or the disability examiner (DE). Instruct the DPS/DE to correct the DIG and SDIG to 3350 on the DCF and send the case to the benefit authorizer (BA) to update the DIG and SDIG to 3350 and the medical re-exam diary to 7 years.

NOTE: Do not remove the ALS coversheet. Keep it in file.

4. Benefit Authorizer (BA) responsibility

Input the change in Medicare entitlement per MADCAP processing instructions.

Update the DIG or SDIG to 3350 (ALS) and update the medical re-exam diary to 7 years.

Send a Medicare notice via MACADE for fully favorable and partially favorable ALS determinations. Do not send a notice for unfavorable ALS determinations (i.e., no ALS onset established within the 24-month Medicare waiting period).

Remove the ALS coversheet if all actions are complete.

5. Notices

a. Fully favorable determination

In fully favorable determinations, the PC issues a DIB and Medicare entitlement notice via MACADE.

DDS does not send a notice.

b. Partially favorable determination

In partially favorable determinations, i.e., onset of ALS is established later than alleged but still within 5-month DIB or the 24-month Medicare waiting period, the DDS sends a notice with appeal rights to the claimant including personalized disability language.

The PC issues a separate notice via MACADE.

c. Unfavorable Determination

In unfavorable determinations, the DDS sends a denial notice with appeal rights.

The PC does not send a notice.

To Link to this section - Use this URL:
http://policy.ssa.gov/poms.nsf/lnx/0445605001
DI 45605.001 - Amyotrophic Lateral Sclerosis - Waiting Periods Waived - Processing Center - 03/06/2025
Batch run: 03/06/2025
Rev:03/06/2025