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Monday, June 15, 2009

Deputize

June 15, 2009

Honestly, I should choose "party" as the post title this afternoon, since I hosted three parties over the weekend. We had another fantastic beading party last Friday. Thanks Nico, Toni, Sandy, Devon, Sam, Lisa, Jesse, Jackson, Douglas, Colton, Aaron, Sarah, Beverly, and Patti, for expanding the lanyard, necklace, and eyeglasses chain collection! Hopefully, you'll come back this week and work some more.

Once I had worn their fingers to a nub, the evening party started, and what goes on at Leisure Lake at the after-party party has to stay at Leisure Lake. Suffice it to say, that most of the parents had a much better time not beading than their kiddos did beading.

Saturday night, we had an undisclosed-but-important-milestone birthday party for my mother. Kat and the beautiful Emma provided much of the liveliness, and by judicious use of candles, we didn't burn the house down. I can't tell you how fortunate I feel to have my mother as my friend and neighbor and how honored I was to throw her a party.



Despite the fun, I must have your serious attention for the rest of the post. If you have not lived in a well for large stretches of the past month, you know that lawmakers are finally getting down to the business of discussing (and hopefully acting on) health care. I have taken an unpaid position in Chet Edwards office for the summer researching health care insurance reform--in particular, the effect having or not having health insurance has on families that are dealing with diseases (interpret this broadly: it could mean rare or common illness and chronic or catastrophic illness, or accidents that require treatment).

Of all the things the Buengers had to worry about during the almost seven years that Erin was sick, insurance was not one of them. We never had to stretch the medicine that kept her from vomiting everywhere during chemo because we could only afford a limited number of doses. We never had to forego treatment or delay tests because a bureaucrat thought she knew something her doctors didn't. We never, ever made decisions about her health based on whether something was covered and something else wasn't. We didn't have to choose between paying our phone bill and our insurance premium. We didn't have to stay in jobs that stunk, or risk losing what coverage we had.

We were damned fortunate.

Having insurance didn't save Erin's life, but it sure made all the days before she died a lot easier and more enjoyable.

I would like to deputize each of you to help me collect information.

Let's start with some simple questions:
  1. How does having or not having insurance affect your ability to get care?
  2. How does having or not having insurance affect the rest of your family life--what trade offs do you have to make?
  3. How does your child's illness and the availability of insurance affect your job status? Did you keep or lose your job? Did you have difficulty changing jobs?
  4. What else would a reasonably informed person want to know about life style changes you had to make?
  5. What changes to health care would help your family the most?

Please. No, let me try again. PLEASE help me.

How?

Send your answers to these question to me at ebuenger@suddenlink.net (NB: Mea culpa, I originally posted the wrong e-mail address. the one in red is correct. It is Erin's e-mail. I am doing this for her because she could never stand the thought that sick children didn't get care.). You do not need to give me your personal information, although I would love to know your zip code. After you have e-mailed me, do one more teeny, tiny thing:

Ask your friends and relatives and facebook compadres and website followers and neighbors and pew sharers to do the same.

This is as serious as I have ever been about any request of you. This isn't political. I don't have a horse in this race in the sense that I am pushing a particular reform. I just want to know what it's like. If you have had a great experience (with or without insurance), let me know. If it has sucked for you, let me know. Let me know what works and what's broken.

Consider yourself deputized. Spread the word.

16 comments:

  1. done. i'm going to go twitter your entry.

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  2. Hey Vickie! I'd love to help, and get my family involved - however, we've been fortunate enough to never have had a seriously ill child. Would you like us to complete the questions that don't pertain to children, or just change it (for example, my mother had cancer, so she could answer those questions in regards to herself).

    Let me know - I wasn't sure if this was just for child-related healthcare, or just everyone in general!

    Kristen

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  3. We've had pretty crummy, expensive insurance. (That happens when you own your own business.) There were also periods where insurance would not cover Jessica's asthma or Nicholas' seizure disorder. It limited our choices. We had to pay lots of money out of pocket because insurance didn't cover everything and our deductibles were more than $1000 per person. Prescriptions were basically not covered. For instance, a drug Josh had to take cost $500 per month. Insurance paid for about $10 of that. I will LOVE filling this out. Let me get Donald to help....

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  4. Id recommend doing one of the online survey sites like surveymonkey or something- its easier for people to fill out, to forward the link to people and also easier for you to compile/have responses in one place. Shorter time to fill out asyou know can increase respondants.

    Id also look at those states which have state supplemental coverage for children with "disabilities"- umbrellafor any major disease. These are a HUGE help. Its like free secondary insurance that covers eberything your primary doesn't- co-pays, meds, deductables. - its not an income qualifying product but a condition-qualifying product. (NC, NY, MA have them) Seem to be a model for success- much of the differential cost is not paid by the state but by the institution, pharmacy, hospital etc.

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  5. Thanks to you all, especially commenter #4 for the encouragement to explore surveymonkey and for the advice about the supplemental coverage.

    VB

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  6. AWESOME! Thank you Vickie! It is so nice to know someone like you is asking the 'right' questions. Erin is SO proud!
    I will respond tonight - I have a lot to say. Meanwhile, I've passed this on.

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  7. Should we post an email with the link on the NBLAST list?

    Lara

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  8. Change made, thanks/whoops! I have no idea if it would be against the rules. I wonder if the email address of one of the moderators is hard to find.

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  9. Thank you so much for your kind words the other day, Vickie. I'm deputized and will get the info out asap.

    Olivia

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  12. Thank you, that was extremely valuable and interesting...I will be back again to read more on this topic.

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  13. Fantastic web site, I hadn't noticed erinbuenger.blogspot.com previously in my searches!
    Keep up the wonderful work!

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  14. This comment has been removed by a blog administrator.

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  15. Have you considered the fact that this might work another way? I am wondering if anyone else has come across something
    exactly the same in the past? Let me know your thoughts...

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  16. Hey,

    Thanks for sharing the link - but unfortunately it seems to be down? Does anybody here at erinbuenger.blogspot.com have a mirror or another source?


    Cheers,
    Peter

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