Navigating SSDI and Medicare for ALS diagnosis with limited work credits - urgent help needed

Good news - ALS is one of the conditions that qualifies for the Compassionate Allowance program, which fast-tracks disability applications. Your sister should definitely apply for SSDI right away, and here's what you need to know: 1. For ALS specifically, the SSA waived the usual 5-month waiting period for SSDI benefits and the 24-month waiting period for Medicare. This is one of the few conditions with this special provision. 2. To qualify for SSDI, she generally needs 40 credits total, with 20 earned in the last 10 years. But the exact number varies by age - at 58, she likely needs fewer. 3. If she doesn't have enough work credits for SSDI, then SSI would be the alternative, but that's means-tested (assets under $2,000 for individuals). I'd recommend applying online at ssa.gov and specifically noting it's an ALS case in the remarks. You can act as her representative by completing form SSA-1696.

my cousin got ALS 3 yrs ago and SSA approved him in like 3 weeks!!! they really do fast track these cases. but i think he had worked regular jobs his whole life so the credits werent an issue. wish u the best, its a hard road ahead :

SSI AND SSDI ARE TOTALLY DIFFERENT!!!! If she doesn't have enough credits for SSDI then SSI is income-based and she CAN'T have more than $2000 in assets. The $32K savings would DEFINITELY disqualify her from SSI until she spends it down! But don't just spend it randomly - there are specific things she can spend it on without penalty. ALS cases are EXPEDITED but that doesn't change the eligibility requirements! Also, she needs to apply for Medicare RIGHT AWAY because with ALS they waive the waiting period. The SSDI and Medicare are SEPARATE APPLICATIONS even though most people think they're linked!

I've been through exactly this with my husband who had ALS (he passed in 2023). For the work credits question - if she doesn't have enough credits for SSDI, she can apply for SSI, but that $32,000 in savings will need to be spent down to under $2,000. Here's what helped us enormously: Contact your local ALS Association chapter IMMEDIATELY. They have social workers who specialize in navigating these exact issues and can help with the application process. They know all the ins and outs of SSDI/SSI for ALS patients and provided us invaluable guidance. They can even help with the communication difficulties. Also - look into whether your state has any supplemental programs for people with ALS. Some states have additional benefits or fast-track Medicaid options that can help with equipment and care needs. Wishing you and your sister strength during this difficult time.

Let me add some clarity about work credits since that seems to be your main concern. To qualify for SSDI, at age 58, your sister would need approximately 36 work credits, with 20 of those earned in the last 10 years (5 years before disability onset). Each quarter that she earned over $1,640 (in 2025) would count as one credit. The threshold was lower in previous years. The critical issue is whether her religious non-profit work was covered employment for Social Security purposes. Some religious organizations opt out of Social Security, and if that's the case, those years wouldn't count toward her credits. However, her 8 years of self-employment should definitely count if she paid self-employment taxes. Two suggestions: 1. Create a my Social Security account for her online to check her earnings record and see exactly how many credits she has 2. Apply for SSDI immediately - if she doesn't have enough credits, SSA will automatically consider her for SSI

have u tried calling social security directly?? the wait times are CRAZY but they can tell u exactly how many credits she has. My mom waited 3 hours last month!!!

WAIT! Just remembered somthing important! ALS is also one of the conditions that qualifys for the COMPASSIONATE ALLOWANCE program. What that means is they process the application super fast and dont make u go thru all the medical evals and waiting. My cousin got approved in under a month. Make sure u mention COMPASSIONATE ALLOWANCE for ALS on the application!!!!

Since ALS is progressive and your sister's speech is already affected, I'd suggest looking into assistive technology right away, in addition to the benefits applications. Many ALS patients use eye-tracking technology and speech generating devices that Medicare will cover with the right documentation. Ask her neurologist for a referral to a speech-language pathologist who specializes in ALS right away. They can help with both communication strategies and the documentation needed for Medicare to cover communication devices when needed.

I know everyone's focused on the SSDI/SSI question, but don't forget to look into whether your sister's state has a Medicaid waiver program that could help with home care. Many ALS patients eventually need significant assistance, and these waiver programs can provide caregivers, equipment, and home modifications. The income/asset limits are sometimes more flexible than regular Medicaid too. Also, has she worked enough recently to qualify for short or long-term disability through her business? That might provide some immediate income while the SSDI application is being processed, even with the expedited timeline.