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    • #15429
      Amanda
      Keymaster

      When someone you love is diagnosed with ALS a million things cross your mind. You and your loved one have to prepare for the future without knowing what will be needed and when.  Healthcare is at the top of the list to look into in order to prepare. Is your pALS covered by private insurance? Do they have Medicare? Have you received assistance from any organizations or family members? How have you and your family navigated these concerns?

       

      For more information about how to prepare for the future with your loved one with ALS  the ALS Association has listed some information here http://www.alsa.org/als-care/resources/fyi/paying-for-home-care.html

    • #16047
      Bob Scannell
      Participant

      My wife is just recently diagnosed with ALS.  She is 52.  She is not eligible for Social Security Disability, because she has been a stay at home Mom since our first child was born.

      So, we are not able for Medicare through Social Security.

      Is there another means of getting into Medicare (because of ALS), other than through Social Security Disability?

    • #16489
      Amanda
      Keymaster

      Bob,

      Have you reached out to the local ALS Association to see if they could help you? They are usually informed about things like this.

    • #16499
      Kim
      Participant

      I too am an ALS patient 56 years old.  Too young for Medicare and don’t qualify for Disability (due to being a stay at home Mom for the last 17 years).  I’ve been in contact with Social Workers, Disability itself, and they all checked into it for me.  They too even agreed our system is flawed, and I’m one who falls through the cracks.  It’s the lack of work credits in the last 10 years since the disability diagnosis (1 year ago) as the reason I don’t qualify for Disability.  Age as the reason I don’t qualify for Medicare (until 65).  Husbands income as reason we don’t qualify for Medicaid.  We do have Medical insurance through my husbands employer.  Our insurance doesn’t cover “durable medical equipment”, but our local/regional ALS Clinic has been a blessing.  They have lent us equipment from their loan closet.  Our local Town Hall also has a loaning closet that was helpful (shower chairs, walkers, rotators, etc).

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