The ALS Medicare numbers worth knowing
Here's what to do, in 4 steps.
Speed matters with ALS, but order matters more. File for SSDI first — that triggers Medicare automatically. Then layer the rest: Compassionate Allowances designation, ALS Association support, Medicare coordination. Here's the order I'd take.
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File for SSDI the week of diagnosis
ALS triggers immediate SSDI entitlement — no 5-month waiting period since the ALS Disability Insurance Access Act took effect in 2020. File at ssa.gov/apply or call SSA at 1-800-772-1213. Bring the neurologist's diagnostic confirmation; SSA's Compassionate Allowances list flags ALS for fast-track adjudication.
Time: 30-60 minutes Cost: Free SSA disability application
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Confirm Compassionate Allowances fast-track
ALS is on SSA's Compassionate Allowances (CAL) list, which routes the claim through expedited adjudication. When you file, make sure the application clearly states ALS / amyotrophic lateral sclerosis — the system flags those keywords. If your local field office hasn't confirmed CAL routing within two weeks, call back and ask explicitly.
Time: Days to weeks Cost: Free Compassionate Allowances list
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Plan Medicare from month one
Once SSDI entitlement begins, Medicare Part A and Part B begin the same month — no 24-month wait. SSA enrolls you automatically. Decide whether to keep Part B if you have employer or veteran coverage; coordination depends on employer size. Call SHIP at 1-877-839-2675 for free, unbiased counseling.
Time: Same week Cost: Free SHIP Medicare counseling
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Connect with the ALS Association
Your local ALS Association chapter has trained navigators who handle SSDI paperwork, Medicare coordination, equipment loan closets, and caregiver support — free. Find your chapter at als.org. Pair this with your neurologist's social worker; together they'll move things faster than working alone.
Time: Same week Cost: Free ALS Association
More information
See the related guide for more benefits information. Use the official sources in this article to check the rules for your question.
Which of these sounds more like you?
ALS hits every family differently. Some people are still working when the diagnosis lands. Some are caregivers reading this on behalf of a parent or spouse. Pick the situation that sounds most like yours and I'll show you the specific path.
I was just diagnosed and don't know where to startPre-application phase
Start with SSDI. Filing for Social Security Disability Insurance is the trigger for everything else — Medicare entitlement, Compassionate Allowances fast-track, automatic Part A and Part B enrollment. The neurologist's confirmation of ALS is what SSA needs.
Don't wait until you feel ready. The Compassionate Allowances list is built for ALS specifically; SSA expects to see ALS applications come in fast. Filing the week of diagnosis is normal, not aggressive.
I'm still working and have employer coverageActive employment with group health plan
If your employer has 20 or more employees, your group health plan stays primary while you're actively working; Medicare becomes secondary. You generally still want Part A (it's premium-free for most people on SSDI) and you can delay Part B without penalty under the Special Enrollment Period rules.
If the employer has fewer than 20 employees, Medicare typically becomes primary the month it starts. That changes the math. Get a Medicare Secondary Payer review before you decide what to enroll in.
I need a speech-generating deviceBulbar-onset or progression to speech loss
Medicare covers speech-generating devices under the Durable Medical Equipment (DME) benefit. Your speech-language pathologist documents the medical need, and a Medicare-enrolled DME supplier provides the device. Communication tablets, eye-gaze systems, and dedicated speech-generating devices are all in scope when medically necessary.
Work with the SLP and the ALS Association together. Both know the documentation Medicare needs and the supplier networks that handle the prescription correctly the first time.
I'm starting to need breathing supportBiPAP, ventilator, cough assist
Respiratory equipment for ALS — BiPAP machines, mechanical ventilators, cough assist devices, suction units — falls under Medicare's DME benefit when medically necessary. Your pulmonologist's documentation drives coverage; the same supplier network used for speech devices typically handles respiratory equipment.
Many ALS patients use both noninvasive ventilation and cough assist. Medicare covers both with the right documentation. Out-of-pocket varies based on supplement coverage, Medicare Savings Programs, and Medicaid eligibility.
I can't afford copays and premiumsIncome near or below federal limits
If income and resources are limited, you may qualify for a Medicare Savings Program (which covers Part B premium and sometimes cost-sharing), Extra Help / Low Income Subsidy (which reduces Part D drug costs), and full Medicaid as a dual-eligible (which can cover what Medicare doesn't).
Apply through your state Medicaid office for MSP and Medicaid; SSA handles Extra Help. Many ALS patients qualify for some combination of these once SSDI income is locked in. Don't assume you don't — apply.
I'm wondering when hospice makes senseLate-stage planning
Medicare's hospice benefit covers comfort-focused care for someone with a life expectancy of six months or less if the disease runs its course. ALS patients often qualify earlier than families expect; hospice doesn't mean giving up curative care — it means shifting the focus to comfort and family support.
A neurologist or palliative care physician certifies eligibility. Medicare covers nursing visits, home health aide hours, medications related to the terminal diagnosis, durable medical equipment, and bereavement support for the family. The decision is medical and personal — talk to your care team early about timing.
I'm helping a parent or spouse with ALSCaregiver / family navigator
If you're the family navigator, three things move things faster: a signed SSA-1696 (representative authorization) so you can talk to SSA on their behalf; a HIPAA release with the neurologist's office so records flow; and a single notebook or shared document tracking dates, contact names, and case numbers.
The SSDI application can be filed online at ssa.gov/apply with the patient's information. Medicare enrollment happens automatically once SSDI is approved. ALS Association chapters offer caregiver-specific support — you don't have to figure this out alone.
None of these match my situationOther / unique circumstance
ALS situations don't always fit a template — atypical presentations, dual diagnoses, complex insurance histories, or veterans' coverage interactions all create their own paths.
Three free channels can help you triangulate: SHIP at 1-877-839-2675 for Medicare specifics; the ALS Association at als.org for ALS-specific navigation; and your neurologist's social worker for the medical-side coordination. Most cases get untangled when those three talk to each other.
Everything people ask me about ALS and Medicare
Do I have to wait 24 months for Medicare like other disabilities?
No. ALS is one of two conditions (the other is end-stage renal disease) where Congress eliminated the standard 24-month Medicare waiting period. Under 42 USC § 426(h), individuals entitled to disability benefits because of ALS get Medicare Part A and Part B starting the first month of SSDI entitlement. SSA enrolls you automatically.
Do I have to wait 5 months for SSDI?
No — not anymore. The ALS Disability Insurance Access Act of 2019 (Public Law 116-250), signed December 22, 2020, eliminated the 5-month SSDI waiting period for ALS. The change applies to disability insurance benefit applications filed after the date of enactment. Combined with immediate Medicare, an ALS patient who qualifies for SSDI can have both starting the first month of disability.
How fast does SSA decide an ALS disability claim?
ALS is on SSA's Compassionate Allowances list, which routes the claim through expedited adjudication. Many ALS claims receive a decision in days or weeks rather than the months a standard disability claim takes. Make sure the application clearly identifies the diagnosis as ALS or amyotrophic lateral sclerosis so the system flags it.
Does Medicare cover speech-generating devices?
Yes. Medicare covers speech-generating devices under the Durable Medical Equipment (DME) benefit when medically necessary. A speech-language pathologist documents the need, and a Medicare-enrolled DME supplier provides the device. Communication tablets, eye-gaze systems, and dedicated speech-generating devices can all be in scope.
Does Medicare cover BiPAP, ventilators, and cough assist?
Yes — respiratory equipment for ALS, including BiPAP machines, mechanical ventilators, cough assist devices, and suction units, is covered under Medicare's DME benefit when medically necessary and prescribed by a Medicare-enrolled physician. Documentation should clearly tie the equipment to the ALS diagnosis and functional decline.
Can I keep my employer health plan when Medicare starts?
Often yes, but coordination depends on employer size. If the employer has 20 or more employees, the group plan generally stays primary while you're actively working and Medicare becomes secondary. If the employer has fewer than 20 employees, Medicare typically becomes primary. Get a Medicare Secondary Payer review before deciding whether to take Part B. SHIP at 1-877-839-2675 can walk you through it free.
What does the ALS Association do that Medicare doesn't?
The ALS Association (als.org) provides ALS-specific case navigation, equipment loan closets, caregiver support, multidisciplinary clinic referrals, and help with paperwork that Medicare alone doesn't address. Local chapters know the regional supplier networks, social workers, and care teams. Contacting your local chapter early is one of the highest-leverage steps a family can take.
Can I get Medicaid in addition to Medicare?
If income and resources are limited, you may qualify for full Medicaid as a dual-eligible — which can cover long-term services, in-home care, and many of Medicare's gaps. Apply through your state Medicaid office. Medicare Savings Programs (QMB, SLMB, QI) are available at higher income levels and can cover the Part B premium even if full Medicaid isn't a fit.
When does hospice make sense for ALS?
Medicare's hospice benefit covers comfort-focused care for someone with a life expectancy of six months or less if the disease runs its course. ALS patients often qualify earlier than families expect. Hospice covers nursing visits, home health aide hours, medications related to the terminal diagnosis, durable medical equipment, and bereavement support. A neurologist or palliative care physician certifies eligibility — talk to your care team early.
What about long-term residential care — does Medicare cover that?
Generally no. Medicare doesn't cover purely custodial long-term residential care. If long-term placement becomes necessary, Medicaid is the primary funding pathway — specifically the long-term care Medicaid program in your state. Many ALS families plan for this transition early; an elder-law attorney or your ALS Association navigator can walk through the options.
More help with this topic
Use the related guide for more detail and practical next steps.
Sources
References from this article's earlier edition are listed below with their original dates. Check the linked agency for current rules and amounts.
- Amyotrophic lateral sclerosis (ALS) is included on SSA's Compassionate Allowances list, which routes qualifying claims through expedited adjudication. —ssa.gov(verified 2026-04-28)
- ALS is on SSA's Compassionate Allowances (CAL) list, which routes the disability claim to expedited adjudication. The current CAL list is published at POMS DI 23022.080, with ALS-Adult specifically at … —secure.ssa.gov(verified 2026-04-28)
- Medicare covers speech-generating devices (SGDs) under the Durable Medical Equipment benefit category established by Section 1861(n) of the Social Security Act, for patients with severe speech … —cms.gov(verified 2026-04-28)
- Medicare covers respiratory equipment for ALS — including BiPAP, mechanical ventilators, and cough assist devices — under the Durable Medical Equipment benefit when medically necessary. —medicare.gov(verified 2026-04-28)
- Under Medicare Secondary Payer rules, when a Medicare beneficiary qualifies based on disability (such as ALS), employers with 100 or more employees must offer the same group health plan coverage to … —cms.gov(verified 2026-04-28)
- Medicare's hospice benefit covers care for individuals certified by a physician as having a life expectancy of six months or less if the terminal illness runs its normal course. —medicare.gov(verified 2026-04-28)
- Medicare generally does not cover purely custodial long-term residential care. Medicaid is the primary funding pathway for long-term residential placement. —medicare.gov(verified 2026-04-28)
- Medicare Savings Programs (QMB, SLMB, QI) are available to Medicare beneficiaries with limited income; QMB pays the Part B premium plus deductibles and coinsurance, while SLMB and QI pay only the Part … —medicare.gov(verified 2026-04-28)
- Extra Help (the Medicare Part D Low Income Subsidy) helps people with limited income and resources pay Part D premiums, deductibles, coinsurance, and other costs. Under post-IRA rules in 2026, … —medicare.gov(verified 2026-04-28)
- The ALS Disability Insurance Access Act of 2019 (Public Law 116-250) was signed into law on December 22, 2020, eliminating the 5-month SSDI waiting period for individuals with amyotrophic lateral … —govinfo.gov(verified 2026-04-28)
- P.L. 116-250 amended Section 223(a)(1) of the Social Security Act (42 USC 423(a)(1)) to eliminate the 5-month waiting period for SSDI benefits for individuals medically determined to have amyotrophic … —govinfo.gov(verified 2026-04-28)
- The amendment in P.L. 116-250 applies with respect to applications for disability insurance benefits filed after the date of enactment (December 22, 2020). —govinfo.gov(verified 2026-04-28)
- ALS triggers immediate Medicare entitlement — the standard 24-month Medicare waiting period does not apply. Under 42 USC § 426(h), Medicare Part A and Part B begin the first month of SSDI entitlement. —law.cornell.edu(verified 2026-04-28)
- Section 226(h) of the Social Security Act (42 USC 426(h)) provides that an individual entitled to disability insurance benefits because of amyotrophic lateral sclerosis is entitled to Medicare without … —law.cornell.edu(verified 2026-04-28)
- The State Health Insurance Assistance Program (SHIP) provides free, unbiased Medicare counseling. The national SHIP locator phone number is . —shiphelp.org(verified 2026-04-28)
A useful next step
This related guide can help with the next steps. Keep the specific rules and exceptions in this article in mind.
About Dr. Ed Weir
Dr. Ed Weir, PhD, spent over 20 years as a Social Security Administration District Manager and over 30 years in government service. He watched good people lose benefits they'd earned every single day because nobody told them the rules. Over $30 billion in benefits goes unclaimed every year. He built 24Help.org to change that.
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