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Who should I contact?

Discussion in 'Parents of Children with Type 1' started by samheis, Sep 10, 2009.

  1. samheis

    samheis Approved members

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    And what should I say?
    I posted last week about our Medicaid suddenly being dropped. I was given a weeks notice, but unfortunately did not open the letter until a week had passed, so it was an even bigger shock to me.
    The day I found out, between my husband and I we called about 10 different people-none of them were helpful. I was finally given the number to our caseworker. She told me we should have gotten notice that we would have to apply for CHIPS-but I never got that notice. I did get our renewal packet back in May, which I filled out and turned in way before the deadline-and they do show acceptance of the renewal, and I also have a letter dated august 4th clearly stating that both of my children will continue to qualify for medicaid.
    So of course I am stumped as to why he was suddenly dropped, and I've never gotten a clear answer to that.
    Meanwhile I called the caseworker again today to find out if she was able to get him reinstated as she promised, and this is when she told me that the paperwork was being mailed out today (I talked to her last thursday-so it took a week!), and basically I have to go through the whole enrollment process since he is being moved from medicaid to chips. So I'm looking at another month before he is covered again. I just told her thank you and hung up-what else could I do but start yelling, and I knew that would get me nowhere.
    Guys, I'm just at a loss here. I know they screwed up, this is not my fault, and I feel like I should at least write a strongly worded letter to someone in charge. But I have no idea who-last week we even called the 'regional office', and that lady was the rudest and least helpful of all of them : (
    I'm really a very laid back and calm person, but this has got me so frustrated.
    Should I be upset? What should I do? Am I being too much of a push over here (cause yes, I normally am) I know our local pharmacy will fill his insulin when we need it-they are so kind to us. But we have to get his strips from a mail order pharmacy (a policy of medicaid), and I don't think I've got enough to get me through another month-not to mention if he gets the flu. Ugh.
    And sorry this got so long. And sorry for the whiny tone-yes, I'm throwing a pity party today :(
     
  2. bgallini

    bgallini Approved members

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    If you want to write a letter, I'd write to your caseworker and the regional office and just politely explain how confusing it was and ask that they come up with some literature to explain this process (he had to change from medicaid to CHIPS b/c of his age right?) Maybe give an example of what the literature could say. Then suggest they mail it to the parent a year or so before the change has to take place and then 6 mos before also.

    I think they should have at the top (and again at the bottom) in large bold letters that at age 6 (whatever the age) children will be taken off of medicaid and must apply for CHIPS. Then a list of steps to apply for CHIPS plus phone numbers for them to call for Medicaid and for CHIPS. And a suggested timeline for doing these things like "when your child is 5 yrs and 6 mos old, you should complete form xyz and turn it into the address on the form".

    What kind of test strips do you use? We have a variety laying around here!
     
  3. Becky Stevens mom

    Becky Stevens mom Approved members

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    I dont blame you for having a pity party Anita:( Its awful when people treat us disrespectfully. We really have enough to deal with without having to put up with inept rude people. Im sorry I dont have any advice to offer. You could try getting in touch with someone on the national level of Medicare maybe.
     
  4. czardoust

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    what kind of meter does he use? im sure someone on here can give you a box of strips.
     
  5. redmcgee

    redmcgee Approved members

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    I learned at a young age because my mom would deal with the state that you do have to stand your ground, espically if you know you are right, they do make mistakes and need to take care of it. So you my have to be rude!!!;)
     
  6. clb1968

    clb1968 Approved members

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    I am in Texas, so I know what you are going thru. Of course as an adult I cant get Medicaid, but we did apply for food stamps in May, they are so backed up and behind they did not even get me a phone interview till the 7th of July and then it took until Auguust 28 for them to finally approve my family for foodstamps, it took another week and a half to get them on the Lonestar card. I was approved for may 2009 until oct 2009, so I got back benifits to May, but I did not get anything for June! I have been trying to reach my case worker all week,lots of messages for her, her supervisior and the assistant super visior too.
    My daughter is covered by CHIP, but no cronic illness , so I dont know how it works for those.


    If you need strips for your son, I can send you some. I have One Touch and Freestyle Lite, just let me know.
     
  7. LizinTX

    LizinTX Approved members

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    I am so sorry you are going through this. Texas Medicaid also messed us up this year. They lost two (t w o) renewal papers of ours, the second time they didn't bother to let us know, they just dropped us. It took three weeks to get re-approved and back on track.

    I don't think anyone is really in charge, so writing a letter would probably just make you feel better, but would just find its way to file 13--kwim?

    I called every day, and just kept explaining the seriousness of his D and that we desperately needed to be covered. Also when we were reinstated, they did go back to the last day of actual coverage, so that technically they were never without insurance. And they would have reimbursed us, had we paid anything out of pocket during the "un insured time" which we didn't.

    Why are they making ya'll go on CHIPs? They don't age out of Medicaid until they are 18 or 19. I am not sure what they do after that though. Anyone know?
     
  8. samheis

    samheis Approved members

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    Thank you everyone. I'm still not sure what's up, but I have submitted the CHIPS ap online to hurry the process. When I called them, that was the best help I could get-submit an ap first.:rolleyes:
    Liz-the best answer I could get about switching to CHIPS is that there are separate brackets of income requirements for children ages 0-5 and then for ages 6 and up. Apparently we are over the new income bracket. (I only found this out by researching the CHIPS website-don't want to credit any of the people I've talked to on the phone with being helpful lol).

    For everyone who has asked, we use the precision xtra. Right now I have about 40 strips left, and was thinking of getting on ebay to see if I can get a few boxes at a cheap price.

    The kindness of everyone responding is very appreciated :eek:
     
  9. samheis

    samheis Approved members

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    My CHIPS enrollment packet finally came in on Saturday. I called first thing this morning to get him enrolled.
    :confused:
    First, the had already done an 'auto-enrollment' which put him in the WRONG HEALTHPLAN (the one that doesn't cover our current endo). I have to wait until Nov. 1 to change plans.
    Second, the case worker was 'misinformed'. Sam cannot be retracted to coverage for September. He won't be covered until Oct. 1. Which means that endo visit from Sept. 1 is about to come out of my pocket.:eek:
    Can't rush or fax the ID forms-they should be in the mail in the next 15 days.
    Meanwhile when I said what am I supposed to do about the rest of this month, and while I wait for the ID forms-I told her I have to refill the insulin on the 25th, that he could get sick, that I'm already cutting down on our bg checks to save strips, but they are going to run out(my mind suddenly started thinking of all the worse case scenarios). She just kept saying 'I'm sorry ma'am, there's just nothing we can do.' Then she offered to get me the numbers to some local faith based charity organizations.:(
    Sorry, I'm just beyond upset right now. I know it's all going to work out-things always do. But meanwhile this helpless feeling sucks : (
    Thanks for letting me sob on your shoulders:eek:
     
  10. Brynn

    Brynn Approved members

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    Where in Texas do you live, I know of a lot of great organizations that help out with this.
     
  11. samheis

    samheis Approved members

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    near houston
     
  12. fdlafon

    fdlafon Approved members

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    You should contact the freestyle program at 1-866-246-2683. They can most likely help you out tremendously until you receive the new cards.
     
  13. MTMomma

    MTMomma Approved members

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    Some thoughts when things go wrong

    There often seem to be such "hoops" to jump through to get our kids what they need. One thing can get off track and suddenly it can feel like a big wreck. I have found it helps to to a few things.

    1.) Take a deep breath. Think about what the priority is for the immediate time. Are there enough supplies to get through the week? The month? What is the most pressing need right now? Do forms or refills need to be taken care of etc? Helps me to break things up into short term priorities otherwise I can get that "everything is wrong and it is all going to be bad" feeling. Ask for help when needed. (I am soooo bad about that one.)

    2.) Don't expect that the people dealing with health coverage,insurance coverage or issues related to products to montor and treat diabetes understand what it is like to have a kids with D. Sometimes I too want to yell "DON'T YOU UNDERSTAND!" They don't but people on this forum do.

    3.) Set up times to make calls and try to have it when you are feeling rested. Take a break if you need to and then get back to it. I have let myself get so caught up in working on issues and making a series of calls that my the end I am crying and can hardly talk..or listen.

    4.) Don't give up. Keep asking those you deal with if there is someone else they know of you should contact. For example "Can you refer me to any other person or agency that you know of that might be able ot help me?"

    Have hope. This is one season of time. It can feel so overwhelming and is full of emotion. It will not always be like this. Hang in there and let us know what we can do to help and also how things turn out. You can do this!!!
     

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