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Social Security - Your Experiences
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Thread: Social Security - Your Experiences

  1. #1
    Senior Member
    Join Date
    September 30, 2005
    Blog Entries

    Social Security - Your Experiences

    The boys sent in the applications and COMPLETE medical history - and were declined. They are over 18. What did we do wrong? I thought MPS was on the auto-yes list.

    Parents of 5 boys- 25, 23, and identical twin 15 years olds. Twins with MPS II. (And I am now a Grandmother!)
    I am what I am and that is all that I am. (I do what I can, however I can, to make life better - and sometimes there is nothing I can do.).
    facebook: find me! kris wiegman

  2. #2
    Forum Committee - Moderator
    Join Date
    February 26, 2004
    Baltimore, Maryland
    Seems to me you need to make an appointment and take medical documentation with you on the disease. It should be if over 18 yrs..
    God never gives me more than I can handle, though at times I wish the load was lighter :-)
    Love to you all!

    Patty and Jesse

    http://www.caringbridge.org/md/myjesse < click here for Jesse's website

  3. #3
    Senior Member
    Join Date
    January 3, 2005
    Waupun, WI
    Blog Entries
    I would make an apt as Patty said and go in as I was also denied (prior to the MPS I being added to the list), it may also be that the wording is very specific on the MPS I approval that only Hurler's automatically qualifies even though our forms are caused by THE VERY SAME GENE ISSUE!? I got it the 3rd try before a Judge who flat out told my lawyer and I he was appalled it had been denied previously as and I quote "how could you work a full time job with as many surgeries, procedures and weekly infusion as you have had?" - Good question! Non-the-less he approved immediately and while I do work a part time job (from home, for a foundation) I can't imagine if I hadn't of gotten SSI as I have spent more time in the hospital and in clinics that I have in my own Apt just about in the past years.
    Erica J. Thiel
    MPS I Hurler-Scheier, Age 30
    "Life is A Journey with a Past, Present and Future, But for Now all we have is Today"

  4. #4
    Senior Member
    Join Date
    June 11, 2006
    Upper Darby, PA.
    Karima has had hers since she was five years old with the MPS diagnosis, and I was even working full time then. I don't understand how or why anyone has to wait so long before applying in different states, its all should be the same federal rules. I constantly keep telling myself I want to move to another state, but I am so afraid about losing services, and medicaid.
    Aunt and Guardian:
    Karima (5-31-88) Age 24
    MPS VI Maroteaux-Lamy

  5. #5
    Forum Helper - Moderator
    Join Date
    January 20, 2007
    Bloomington, IL
    I cannot believe that they were denied. Were they denied because of disease or due to assets? You may need to talk to an attorney.
    Valerie Barnett

    Steffany (06/29/95 to 02/26/11) MPSIIIA
    Stevie "BammBamm" (12/14/97 to 12/31/12) MPSIIIA

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