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    • #21165

      My husband diagnosed 3 months ago is working full time at this time.  We want to know our options regarding how and when one applies for medicare. He is planning to take long term disability from work when he is not able to work. Want to know timeline for applying for social security and medicare.

    • #21167
      Dagmar Munn

      Hello Sonsu,

      The ALS Association has a good and thorough explanation at this link:

    • #21172
      thomas hubbard

      This website just leads around in circles, never provided any usable real information. It seems more designed for building membership and donations than actually helping somebody.

    • #21175

      Sonsa, I had the option of Long Term Disability through my employer as well and took it. The insurance carrier for my LTD plan actually hires a company to assist their disability members with applying for SS Disability, maybe your husbands LTD insurance carrier will do the same. When I say assist, they walked me through the whole process, even filling out and mailing forms for me. It works to their benefit to get you onto SS as soon as possible because it’s less money that the insurance company has to pay out to your husband. SS will fast track your husband’s case through because of his diagnosis and once he’s approved he will automatically be put onto medicare. His medicare effective start date will be back dated to the same date as the start date of his total disability. (I am only 51 yr old)

      Another option for assisting with the process….most ALS clinics have contacts with a company that can also assist with the process.

      If you have any other questions, I can try to answer, but I am not an expert by any means!

      • #21234

        <p style=”text-align: left;”>Thank you Lisa. My husband does have long term disability with his employer. To the extent he gets Social Security disability benefit does his LT Disability carrier pays less?</p>
        From the time you inform your employer how long did it take you to start getting disability benefit from employer policy provider. How does that process work.




        • #21272

          Sorry That I am just getting back to you Sonsu.  I think Dustin probably answered your questions, but I’ll throw in my 2 cents.  Just as Dustin said, if your husbands LTD policy pays states that they pay 60%, The carrier will pay the full 60% until his SS is approved. At that point, he will receive whatever his SS payment is, then the LTD will make up the rest to get him to that 60% mark.

          I was on short term disability while I applied for Long term, short term kicked in after 1 week of vacation pay and lasted up to 6 months where I worked.  Hopefully your husband has that option.  The process for the LTD took longer, probably 4-6 weeks for me, but I was collecting short term disability while it was being processed. And just as Dustin said, my LTD benefit is taxed because my employer paid the premiums.

    • #21263
      Dustin Kassman

      I completed the process of applying for SSDI and long term disability (LTD) insurance last year. Here are the highlights:
      – You will automatically qualify for SSDI and Medicare based on your ALS diagnosis.
      – While it may take several weeks (mine took 6), both will be retroactive back to your application date.
      – The amount you receive for SSDI will be approximately the same as if you worked until normal retirement age. If you create an account on it will show you your estimated SSDI amount.
      – My LTD policy had a 90 day waiting period before it went into effect. If you have a short term disability policy it will cover this period; my employer did not offer such coverage.
      – The amount that you get from LTD will be the amount stated in your policy MINUS what you receive from SSDI. Your LTD policy will require that you apply for SSDI.
      – Your SSDI payments are taxable.
      – Your LTD portion is non-taxable IF you paid for the policy yourself, otherwise it is taxable if your employer paid the premiums.

    • #21309
      Jan: CA, pals

      Lisa and Dustin offered very easy, detailed, everyday talk, understandable, help to get through this disability/Medicare maze, thank you for that 🙂

      I don’t believe it is very professional for a lead to answer with a link, just my opinion.

      Thomas, I couldn’t agree more. There are some days where I received 6, yes SIX emails and TEN to FIFTEEN emails from the “organization”. Too many employees and not enough work for them? They must also be giving out my address to other individuals because you know, if there is a persons name on the from line and you did not give that person your email address, it is Just unsolicited junk mail. Although it is annoying to receive unsolicited junk mail, the easy fix is just to NOT EVEN OPEN and send it to SPAM. I have stopped trying to use unsubscribe, takes too much time, so spam is my friend. The reason I opened this email—–> it said FORUM!!!
      Now that is something for me and worth reading. I am glad I did! ‘Just saying…

    • #21310
      Jan: CA, pals

      Opps, please add: per week… 10-15 emails per week.

    • #21774
      John Addy

      I was diagnosed in 2019.  I can not get disability because I do not have enough work credits.  Is there any hope for me getting Medicare to help with expenses and services ?

      • #21780
        Dagmar Munn

        John, Here are some helpful tips and information:

        1. There are special Medicare eligibility rules for people with ALS. You’re eligible for Medicare as soon as your SSDI benefits begin (and there’s no longer a waiting period for SSDI as of 2021).
        2. To qualify for SSDI: If you have worked at least five of the last ten years and have paid taxes for a total of 40 quarters (ten years) or more, you should qualify.
        3. If you cannot qualify for Social Security Disability, look into Medicad: which is jointly funded by the federal government and state governments. Medicaid is a health insurance program primarily for low-income families and individuals that provides free or low-cost coverage.
        more here: and here:
        4. I suggest you contact the ALSA Care Coordinator in your state. They (ALSA) have Medicare consultants who are familiar with the challenges of finding coverage for those with ALS. This link has a space to find your local chapter

      • #21791


        I found this on the AARP website.  I don’t know if it will be helpful for you or not.

        Can I get Medicare if I’m not getting Social Security yet?

        Yes. But you should be aware of the enrollment deadlines, as Social Security will not sign you up automatically at 65 for “traditional Medicare” — Part A (hospitalization) and Part B (health insurance) — as it typically does for people already collecting Social Security benefits.

        In this situation, you’ll have to enroll yourself, either online or by contacting Social Security. Medicare and Social Security are two separate programs, but the Social Security Administration runs enrollment for traditional Medicare.

        You can enroll in Medicare parts A, B and D (prescription-drug coverage) as early as three months before the month you turn 65 or as late as three months after the birthday month. (That’s called your initial enrollment period.) For example, if your 65th birthday is July 4, 2022, the initial enrollment window is open from April 1 until October 31.

        Here’s why you need to be on top of your deadline: If you don’t sign up during those seven months, you may be subject to a permanent surcharge once you do enroll.

        Part A is free if you qualify for Social Security, even if you have not claimed benefits yet, but Part B carries a premium. In 2022, the standard Part B premium is $170.10 a month; it goes up for beneficiaries with incomes above $91,000 for someone who files an individual tax return and $182,000 for a married couple filing jointly.

        If you are not yet receiving Social Security benefits, you will have to pay Medicare directly for Part B coverage. Once you are collecting Social Security, the premiums will be deducted from your monthly benefit payment.

        If you decide to purchase a Part D prescription-drug plan, it’s best to do so during your initial enrollment period; otherwise you may pay a higher premium, permanently. Your Part D provider cannot deny coverage even if you are in poor health or have a preexisting condition. You can choose between paying Medicare directly or having Part D costs deducted from your Social Security payment.

        Keep in mind

        • The Medicare eligibility age of 65 no longer coincides with Social Security’s full retirement age (FRA) — the age when you qualify for 100 percent of the Social Security benefit calculated from your lifetime earnings. FRA was long set at 65 but it is gradually going up: It’s 66 years and 4 months for people born in 1956 and will settle at 67 for those born in 1960 or later.
        • Even if you don’t qualify for Social Security, you can sign up for Medicare at 65 as long you are a U.S. citizen or lawful permanent resident. You will have to pay Medicare directly for all coverage, including Part A (unless you or your spouse are among the small number of state and local government employees who paid Medicare taxes but not Social Security taxes; in this case, you may be able to get Part A for free). 

        Updated March 7, 2022

        More on Social Security and Medicare

    • #21783
      Kathy stitz

      Hi John,

      There is another federal program called Supplemental Security Income (SSI).  This program helps those who are disabled but did not have enough work credits to qualify for SSDI.  You get a payment each month with SSI and you also qualify to receive your state’s Medicaid.   However, there are asset and income limitations to qualify for SSI.  You can call the Social Security office where you live about this.

      • #21785
        Dagmar Munn

        Thank you for adding that, Kathy. There are so many pieces to the medicare/disability puzzle – – every little bit helps!

      • #21789
        John Addy

        Thank you Dagmar

    • #21787
      Kathy stitz

      Thanks Dagmar!

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