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Re: [Myotubular_Myopathy] Insurance Woes

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  • connie guinn
    Shannon, Contact your insurance company and tell them that you want to be set up with a case manager (you may have to apply for this, or you may have to jump
    Message 1 of 7 , May 16 5:14 AM
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      Shannon,
      Contact your insurance company and tell them that you
      want to be set up with a case manager (you may have to
      apply for this, or you may have to jump through a
      series of telephone hoops to get this done- just be
      persistent). I have had this same promblem with our
      new insurance company. They only approved 60 days a
      year of PDN at home (but, they will cover 100% if he
      is living in a clinical setting- ?????? Arghhh!!!)
      Anyway, we have had to make all sorts of continuous
      effort to get a case manager for Benjamin. Usually,
      the case manager will get things done! Our last
      insurance co. that we used immediately OFFERED us a
      case manager! And, boy, did she make our life SO much
      easier! The 'regular people' were no help to us at
      all- ever. But, the case manager knew us and our son
      well. Whe was on top of everything- faxing documents
      and approval notices left and right. I would call
      her and say that I had a letter from the Ins. Co.
      saying that this or that were denied and I didn't
      understand why, and she would say, "Tell them to fax
      it to me at --- #, and I will have it approved in 2
      days- Benjamin obviously needs that." And, she would
      have it approved in 2 days! So, try that. That's
      what we are trying, too. Maybe that was just an
      exceptional Ins. Co. that we had, but, hopefully, ALL
      case managers are just as prompt and efficient.
      We'll fing out! Hand on. It will all work out in
      the end. Blessings.
      -Connie
      --- Shannon <smashintwo66@...> wrote:
      > I am sorry to be using this board to generally vent
      > lately, but I am
      > so frustrated!!!
      >
      > Our primary insurance is only offering a certain
      > money pool for
      > us to use for nursing this year. This money pool
      > will only cover
      > approximately 1/2 of the year. We were told that our
      > secondary
      > would then cover the amount for the remaining of the
      > year.
      > Needless to say, the secondary decided that Javad
      > didn't need
      > nursing. I was soo frustrated. We put together an
      > appeal and
      > sent it off. Our case manager called today and said
      > they would
      > give us 4 hours per day for 60 days after our
      > primary has run out.
      > I feel like they just threw me an offer to shut me
      > up. Needless to
      > say, this offer is not satisfactory! I can't go to
      > work with only 4
      > hours and it is only for 2 months. Javad has been
      > pretty sick as
      > you know so we can't leave him with anyone! My
      > family doesn't
      > help (they don't know how and don't really seem to
      > be interested)
      > so the nursing care is crucial to Javad's health.
      > Thanks for
      > letting me vent. Please keep this in your thoughts!
      >
      > Shannon
      >
      >





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    • Amanda
      Shannon, Don t apologize for venting here - we are here to listen! I am really sorry you are having to go through all of this. Isn t it enough that Javad has
      Message 2 of 7 , May 17 3:58 AM
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        Shannon, Don't apologize for venting here - we are here to listen!
        I am really sorry you are having to go through all of this. Isn't
        it enough that Javad has been so sick lately?! I agree with Connie
        about obtaining a case manager. They can be a realy asset. The
        customer service dept. has no clue how to handle our requests, so we
        have to have one.

        I really hope things are better today! Please keep us updated.

        Sending lots of hugs your way,
        Amanda


        --- In Myotubular_Myopathy@yahoogroups.com, "Shannon"
        <smashintwo66@y...> wrote:
        > I am sorry to be using this board to generally vent lately, but I
        am
        > so frustrated!!!
        >
        > Our primary insurance is only offering a certain money pool for
        > us to use for nursing this year. This money pool will only cover
        > approximately 1/2 of the year. We were told that our secondary
        > would then cover the amount for the remaining of the year.
        > Needless to say, the secondary decided that Javad didn't need
        > nursing. I was soo frustrated. We put together an appeal and
        > sent it off. Our case manager called today and said they would
        > give us 4 hours per day for 60 days after our primary has run out.
        > I feel like they just threw me an offer to shut me up. Needless to
        > say, this offer is not satisfactory! I can't go to work with only
        4
        > hours and it is only for 2 months. Javad has been pretty sick as
        > you know so we can't leave him with anyone! My family doesn't
        > help (they don't know how and don't really seem to be interested)
        > so the nursing care is crucial to Javad's health. Thanks for
        > letting me vent. Please keep this in your thoughts!
        >
        > Shannon
      • ANN MILLER
        Hi Shannon, My name is Darlene I recently joined the group. I have a grandson who has XLMTM. All I can say is get a case manager. We have one and she is
        Message 3 of 7 , May 17 6:00 AM
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          Hi Shannon,
           
          My name is Darlene I recently joined the group.  I have a grandson who has XLMTM.
          All I can say is get a case manager.  We have one and she is great!  When ever I
          have a problem, be it medical or supplies,  I call her and in 48  hours everything is
          taken care of.  The only problem we have is no nursing.  We have the hours for one,
          but couldn't get anyone to come or once they came and found out Kyle has a trach
          and g-tube and had one of his holding his breath episodes, they wouldn't come back. 
          Most of the nurses in our area are scared because they don't understand.  Anyway
           back to your question.  If your insurance doesn't have one that will help, talk to
          your case manager at your  hospital, they can refer you to different agencies that
          can also help.  I don't know your area, but check with your Social Security
           Department, ours has a department called SSI that also helps with kids with
          disabilities.  We are praying  Javad is feeling better soon.
           
          Darlene
           
        • redscootee@webtv.net
          Shannon You don t ever have to apologize for venting. We are all one big family here. Not only in good times but in bad as well. Will send up a prayer asking
          Message 4 of 7 , May 17 10:48 PM
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            Shannon You don't ever have to apologize for venting. We are all one big
            family here. Not only in good times but in bad as well. Will send up a
            prayer asking the ins. co. to open their eyes to the needs of your
            family. Maybe you could drop him off at their office a few days a week
            and they would quickly change their minds about needing nursing. lol
            Just trying to get you to smile. I know how frustrating they can be at
            times. Keep us posted. take care pat
          • chicubsfan63
            My son Joseph has mtmcnm and was diagnosed in April of 2008. He s recently been prescribed AFO s, sit/stand chair and the vest . The insurance company (Anthem
            Message 5 of 7 , Feb 2, 2009
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              My son Joseph has mtmcnm and was diagnosed in April of 2008. He's recently been
              prescribed AFO's, sit/stand chair and "the vest". The insurance company (Anthem Blue Cross
              & Shield) is fighting us over payment. I'm currently in the appeals process and waiting to have
              my hearing. Has anyone else dealt with this issue? Any suggestions?
            • Diana Manny
              We too have Anthem Blue Cross....however, we have had no issues with getting things approved.  However, I have had to fight my insurance group in getting Luke
              Message 6 of 7 , Feb 9, 2009
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                We too have Anthem Blue Cross....however, we have had no issues with getting things approved.  However, I have had to fight my insurance group in getting Luke transferred to another Pulmonary doc that works out of Childrens Hospital of Los Angeles.  I have found that you need to speak to your case manager directly at Anthem.  You should have one.  If not ask to speak with the medical director.  I threatened my insurance group when they denied us to go to another doctor.  I asked for the medical directors name and medical license number and the address where to send my summons to.  They changed their tune really quick.  Have you looked into your states Medi-Cal waiver programs?  Thats another route to go. 
                 
                Diana

                --- On Mon, 2/2/09, chicubsfan63 <chicubsfan63@...> wrote:
                From: chicubsfan63 <chicubsfan63@...>
                Subject: [Myotubular_Myopathy] Insurance Woes
                To: Myotubular_Myopathy@yahoogroups.com
                Date: Monday, February 2, 2009, 5:13 PM

                My son Joseph has mtmcnm and was diagnosed in April of 2008. He's recently been
                prescribed AFO's, sit/stand chair and "the vest". The insurance company (Anthem Blue Cross
                & Shield) is fighting us over payment. I'm currently in the appeals process and waiting to have
                my hearing. Has anyone else dealt with this issue? Any suggestions?


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