PROGRAM OPERATIONS MANUAL SYSTEMPart DI – Disability InsuranceChapter 456 – Amyotrophic Lateral Sclerosis (ALS) -- Medicare Waiting Period Waived -- PSCSubchapter 05 – ALS -- Medicare Waiting Period Waived -- PSC ProceduresTransmittal No. 2, 03/06/2025
Audience
Originating Component
ODP
Effective Date
Upon Receipt
Background
This transmittal incorporates updates to the 5-month waiting period exclusion policy to include all applicable scenarios and clear instructions on how to waive the waiting period.
Summary of Changes
DI 45605.001 Amyotrophic Lateral Sclerosis (ALS) - Medicare Waiting Period Waived - Processing Center (PC)
We made language and formatting changes throughout this entire section to provide clarity. We updated and changed subsection titles to make this policy clearer.
Subsection A - Spelled out the acronym DIB (disability insurance benefits) to clarify the meaning. The public law is included to clarify the purpose for the change.
Subsection B - Added language to explain and clarify the policy change.
Subsection C - Updated the title of this section for clarity. Added cross referenced policy. Clarified what is meant by an "Unfavorable" decision.
Subsection D -Updated the title of this section was updated for clarify. The language was added to explain what is meant by "Fully Favorable, Partially Favorable, and Unfavorable" decisions.
Subsection E - Simplified language for clarity.
Subsection G - Updated the language to clarify the necessary steps to take when a claimant is within their 24-month waiting period and now alleges having ALS.
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.
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.
Use the diagnosis code 3350 to identify an ALS diagnosis. This can be the Primary (DIG) or Secondary (SDIG) diagnosis.
Annotate a new hospital insurance (HI) period code of "W" on the Master Beneficiary Record (MBR) to designate these cases as "NO WAITING PERIOD."
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).
ALS onset is the same or earlier than the claimant’s alleged onset date for ALS, see DI 25501.280 A2.
ALS onset is later than the claimant’s alleged onset date.
DDS finds the claimant does not have ALS.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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 no t 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.
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.
In fully favorable determinations, the PC issues a DIB and Medicare entitlement notice via MACADE.
DDS does not send a notice.
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.
In unfavorable determinations, the DDS sends a denial notice with appeal rights.
The PC does not send a notice.