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Thread: What Is Next For Jonathan?

  1. #11
    Distinguished Community Member agate's Avatar
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    Oct 2006
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    Rose, I hope you'll write that letter. It seems very wrong that things are being made even more difficult for people in an already complex and difficult situation. And I hope that the letter gets some results.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  3. #12
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((agate)))))) ~

    Today, I spoke to Jon's Medi-Cal case manager, and she explained to me the reason why Jon's supplies were no longer being provided by his home health agency: the agency is not a DME, and Medi-Cal refused to pay claims.

    So, it was not the new Director's decision to terminate patient supplies from the home health agency. It was Medi-Cal.

    No letter to the Director now.

    Medi-Cal Case Manager regarding the 100 ml saline bottles vs the 250 ml saline bottles:

    "Well, you could open the 250 ml bottle, and pour it into sterile urine collection cups. Then each time you opened one of them, you would have sterile water."

    My response:

    "Okay. First I have to get a supply of sterile urine sample cups. Then I have to find a place to store them. And the 250 ml saline water bottles. Then, I have to retrieve both, set up a system whereby I pour water into each. Then I have to find a place to store them.

    Do you understand that I work 20 plus hours a day, sleep for maybe 3 hours a day, take care of Jon and my husband, and the house, and the errands, laundry, everything?

    Why should I have to be pouring water from a 250 ml bottle into urine sample cups, when I can use 100 ml bottles as I have been for years? Let's just add more for me to do. It may seem minor, but if you'd like to come over and spend a day or two with us, you'll soon find out that anything extra is not minor."

    This case manager is an RN, but even she doesn't "get it."

    Given today's Executive Order about health care, I don't know what is around the corner for us. But I can't worry about that now. I have to fight the battle before me first.

    Love & Light,

    Mom to Jon, 47, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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