Thursday, July 30, 2009

Fighting the insurance company: na-na-na-na-na, I won!

It's been almost two years since I launched a war against our insurance company to get them to pay for speech treatment/dysphagia therapy for Max (it's a condition in which someone has difficulty swallowing). I've spent countless hours writing letters, making phone calls, photocopying, writing more letters and getting Max's therapists and doctors to write letters explaining why he needed therapy.

I was never going to give up. But when the insurance company denied our second appeal on the grounds, they said, that Max did not have dysphagia, I erupted like Mount Vesuvius.

Max has issues swallowing food that's not soft or mashed up. He chokes on water sometimes. He's in danger of aspirating, if we're not careful.

And so, I got the neurologist to write a letter stating that Max had dysphagia and explaining why it was a life-threatening condition. The two speech therapists did the same. The pediatrician's office sent growth charts showing how Max had fallen off them because of the eating issues he has. Sobering letters, but the proof we needed. Oh, and then I sent a strongly-worded letter pointing out that their statement that Max did not have dysphagia was patently wrong. And yeah, I used the "l" word: lawyer. As in, I would get one.

The insurance company sent the appeal for external review.

WE WON. They will pay for past dysphagia therapies and new ones going forward.

A few things I learned along the way:
• If you or your child have any sort of ongoing condition, ask to be assigned to one bill processor or rep who you can dial directly. This is so much easier (and eminently less frustrating) than getting caught up in the "IF YOU ARE HUMAN, PRESS 1 NOW!" automated phone system every time you call.
• Also find a manager at the company you can reach out to as necessary.
• Keep notes on every single phone call you make; ask for the person's name, department and any other identifying info.
• If you're getting nowhere—or getting the run-around—ask someone in your benefits department to reach out to your company's insurance rep.
• Ask your child's therapists for clues. They know what's helped other parents fight insurance companies, they know what therapy codes make it through and what don't and they can suggest wording to use in a letter.
• Insurance companies might count on you to give up/go away/expire of natural causes. But as a nice bill processor once told me, "The squeaky wheel gets oiled."

Keep squeaking!

Photo by Pewari Naan


  1. Kick-Ass Ellen!

    You are such a Mama Warrior, I love hearing about your adventures! Max and Sabrina are so lucky to have you :)

    And thanks for the tip on getting the personal bill rep, those voice menus are maddening!!!

  2. One thing I learned early on in fighting for my daughter is never tell your story to the person who answers the phone. Always ask for a supervisor, otherwise, you will end up telling your story many times over before you get passed to a person who can actually do something.

  3. Good advice.

    Fighting the insurance company takes stamina extraordinaire - beyond the strength of some - who might feel guilty when others seem to be able to do more. Everyone does the best they can.

    Hoping we will all not have just one insurance to 'fight' in the future.

  4. Once you have gone down that road you are never quite the same when you hear "Health Insurance". 20 plus years ago there was practially ZERO coverage for infertility. They flagged me for sure that when I finally was pregnant they automatically denied my pregnancy test!!! I enjoyed throwing that in their face as well as too won speech therapy years later for my sons. Your advise is great for the battle. Its just so hard some times to keep going with all the buerocracy (which I don't know how to spell).

  5. Very good advice! I heard from a friend a long time ago about being the squeaky wheel! It's hard for me - I'm not a "squeaky wheel" type person, but hey, I'll do what it takes!

  6. Great advice. Thank you for sharing.

  7. That is awesome.
    We have been fighting the insurance company for quite some time. They told us it was covered, we did it and then they decided not to cover, something about the way it was label and medical necessity, caps, etc. Now we are fighting big bills.
    Congrats for you!

  8. Barbara from BostonJuly 30, 2009 at 6:12 PM

    Britney Spears says"YAAHOO"!

  9. Awesome! I think I might have to print this one out or something.

  10. YEAH, ELLEN!
    SO proud, we are of you! Someone should think up a job for us moms out there, who have become such "warriors". Something that pays, oh I don't know, $10,000/hr! It's got to be a useful asset to some insurance hating, dr busting organization! I had a similar experience 2yrs ago w/ SC TEFRA, after months of fighting we did get approval. Once I spoke with some new person on the phone and they HAD HEARD ABOUT ME via other case workers!!!! LOL

  11. It's no more fun dealing with those bloodsuckers when you're trying to settle a life insurance, either. I am so glad you won, I mean, really, why do folks pay premiums? So the executives can get rich? I swear that is how they look at it.

    Yay Ellen, you go girl!

  12. Can I link this Ellen? We don't have to have universal private insurance here in Ireland (well, hmm, kinda)
    but we pay social insurance premiums with our wages and are supposed to expect the public service to provide. (again, COUGH!)

    The advice you give can be applied to dealing with our Health Department, Autism Services and Education department along with social welfare.

    So I would love to put it up on the IAA blog?


    (ps. I have ADD so will go ahead and do it as I can't wait for an answer.Hey, I can't wait for anything.
    You can tell me to take it down if you like)

  13. Good for you! I agree about the squeaky wheel! Never underestimate the determination of a mom!

  14. This is Hammie aka lisadom irishautism action. I linked this brilliant information to the workblog!


  15. Thats awesome!
    I hate that insurance companies are like this, don't they know our special needs children are the future!

  16. Well done!! Love to hear when someone has a victory with bloodsuckers! I saw this linked over on the IAA blog and it got a such a positive response there too. I for one am recharged reading your story and prepared to keep squeeking! xxx


Thanks for sharing!

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