ALS and SSDI: No Five-Month Waiting Period

An ALS diagnosis removes both of the waiting periods that every other SSDI claimant faces. Cash benefits start with the first full month of disability instead of after five unpaid months, and Medicare starts that same month instead of after 24 more.

Congress created this treatment through two separate laws, one for each waiting period, and the pair works together so that a person with ALS moves onto benefits and health coverage at the same time. Understanding the two carve-outs explains the dates on an award notice, the size of a retroactive payment, and why Medicare premiums appear on the very first statement.

Two Separate Waivers, Two Separate Laws

The five-month waiting period normally sits at the front of every SSDI claim. Under 20 CFR 404.315(a)(4), a claimant must be disabled for five full consecutive months, and under 404.316(a), benefits cannot begin earlier than the first month after that period ends.

The ALS exception to that rule came late. The ALS Disability Insurance Access Act of 2020, Public Law 116-250, amended the Act so that no waiting period applies to a person medically determined to have ALS whose application for disability insurance benefits was approved on or after July 23, 2020. SSA wrote the change into 20 CFR 404.315(a)(4)(ii).

The Medicare carve-out is older. Section 115 of the Medicare, Medicaid, and SCHIP Benefits Improvement and Protection Act of 2000, Public Law 106-554, created section 226(h) of the Social Security Act, codified at 42 U.S.C. 426(h). It waives the 24-month Medicare waiting period for people entitled to disability benefits based on ALS.

What the Cash Carve-Out Does

Without a waiting period, entitlement begins with the first month covered by your application in which you meet every requirement, as 20 CFR 404.316(a) provides. For a person whose ALS began and was established on the first day of a month, that month itself is the first month of entitlement.

One calendar rule still applies. Disability must exist throughout a full calendar month for that month to count, so an established onset date that falls after the first day of a month pushes the first month of entitlement to the following month. SSA's Disability Benefits publication, Publication No. 05-10029, July 2026 edition, shows this arithmetic with its standard example of a January 15 onset producing a first payable month of July, although in an ALS claim only the partial-month rule applies, not the five-month wait.

The regulation also adjusts the benefit calculation date. Under 20 CFR 404.317, a disability benefit is normally computed as if the worker were age 62 at the start of the waiting period, and when the waiting period is waived because of ALS, the computation is made as if the worker were 62 in the month of entitlement. The point matters for people who kept working after onset, because earnings in the months after the assumed age-62 date can reduce the average used in the computation.

What the Medicare Carve-Out Does

For everyone else on SSDI, Medicare Part A begins on the first day of the 25th month of disability benefit entitlement, under section 226(b) of the Social Security Act, 42 U.S.C. 426(b), as described in POMS HI 00801.146. That section also counts every month of entitlement toward the 24, including months when no cash benefit was actually paid.

ALS claimants skip all of it. POMS HI 00801.146 states that people with ALS are entitled to Medicare beginning July 1, 2001, or the first month of disability benefit entitlement, whichever is later, because section 115 of the 2000 law waived the 24-month wait. A person diagnosed with ALS while already inside a waiting period becomes entitled effective with the later of the ALS onset month or July 1, 2001.

SSA enrolls the beneficiary in Part A and Part B automatically when the claim is approved. Part A carries no premium for most people based on their work history. Part B carries a monthly premium, $202.90 a month in 2026 under the CMS premium fact sheet published in November 2025, and SSA withholds it from the monthly benefit, so it appears on the very first check.

How the Waivers Change Back Pay

The five-month waiver reaches into the retroactive calculation in a way many claimants miss. In a standard claim, five months of disability are never payable, and back pay begins only with the month after the waiting period. In an ALS claim, back pay can begin with the first full month of disability.

The retroactive cap still applies on top. Under 20 CFR 404.621(a)(1), benefits can be paid for up to 12 months before the month you filed your application. A standard claimant must have been disabled roughly 17 months before filing to collect all 12 retroactive months, because the five waiting months come off the front. An ALS claimant needs no such cushion, so a person who stopped working from ALS a year before filing can collect every one of those months.

Here is an illustrative example with made-up numbers. Suppose SSA established an ALS onset date of November 5, 2025, the person applied in September 2026, and the claim was approved with a decision issued that same month. December 2025 is the first full month of disability, so entitlement, Medicare, and back pay all begin December 1, 2025. Past-due benefits then run December 2025 through August 2026, nine months, with no unpaid waiting months subtracted.

One Medicare cost follows the money. Because Medicare runs from the first month, the back pay includes months of Part B entitlement, and the premiums for those months come out of the lump sum before it is paid, at the rate in effect for each calendar year.

The Claim Still Has to Be Approved

The waiting-period waivers change when benefits start, not whether they are granted. An ALS claim still must satisfy the disability standard, and the medical evidence and evaluation criteria belong to a different stage of the process than this site covers.

Two features of that stage are worth knowing in passing. SSA includes ALS on its Compassionate Allowances list, which routes the claim to priority handling, and the SSA Listing of Impairments addresses ALS at Listing 11.10, so a confirmed clinical diagnosis can satisfy the medical standard without waiting to document advanced functional loss. Approval, however fast, is still a determination SSA must make.

Practical Points for New ALS Beneficiaries

Keep a few dates straight when the award notice arrives. The established onset date fixes the first month of entitlement and of Medicare. The application date fixes the 12-month retroactive window. The decision date fixes the last month of past-due benefits, which run to the month before the favorable decision under 20 CFR 404.1703.

Family benefits follow the worker's dates. Spouses and children entitled to auxiliary benefits on the record start with the same first month, since their entitlement piggybacks on the worker's under the family benefit rules, subject to the family maximum.

If employer coverage or COBRA was in the picture, tell the plan administrator the Medicare date right away, because group coverage and Medicare coordinate, and the COBRA disability extension rules key off the SSA determination date. That coordination, along with the medical side of the claim, is where a representative or an SSA claims representative can help most.

Frequently Asked Questions

Does ALS remove the five-month SSDI waiting period? Yes. Under 20 CFR 404.315(a)(4)(ii), no waiting period applies to a person medically determined to have amyotrophic lateral sclerosis whose disability application was approved on or after July 23, 2020. The change was made by the ALS Disability Insurance Access Act of 2020, Public Law 116-250.

When does Medicare start for an SSDI beneficiary with ALS? With the first month of cash entitlement. Section 226(h) of the Social Security Act, 42 U.S.C. 426(h), waives the usual 24-month Medicare wait, and POMS HI 00801.146 says Medicare begins with the first month of disability benefit entitlement, or July 1, 2001, whichever is later.

Does the ALS waiver change how much back pay I can receive? It removes the five unpaid waiting-period months from the calculation, so entitlement can reach back to the first full month of disability. The separate 12-month retroactive limit in 20 CFR 404.621(a)(1) still applies if you filed your application late.

This article is general information about Social Security rules, not legal advice. Program rules change over time. For advice about your own claim, consult a qualified representative or contact SSA directly.