Friday, September 12, 2008

An Open Letter to Insurance Company Exectives AKA My Magnum Opus

I've been inspired yet again by Shosh and her rant post about the idiocy of insurance companies.

Hence you will now get "The Mom of a Disabled Child's Rant Letter to Insurance Company Executives"

Dear Sir:

I'm sure you don't know me. Wait, you just might. My child has cost your company approximately $250,000 this year, to date, and there are still three months left. It's distinctly possible that you have formed a dart board out of my family's name, and have "kill the P Family" dart contests every Friday afternoon over beer and peanuts.

I'm writing to you to discuss for a moment the idiocy and hoops that I need to jump through for my child.

I'd like to preface this by explaining about my lovely child Dovi. Dovi has Familial Dysautonomia, a really crappy disease. No, we did not know about it, nor had we ever even heard about it, when Dovi was born at 36 weeks gestation, when Benjie and I were both twenty, eagerly awaiting our honeymoon baby. But it was clear very quickly after he was born that we had many issues to deal with.

And thus began my odyssey through the second biggest burden to parents of disabled children (after actually dealing with their CHILDREN) : dealing with the insurance companies.

If I got paid by the hour for the amount of time I have spent dealing with you people, I could quit my job, Benjie could close up the store, put the addition on our house we want need, and put our feet up for a while. Instead, I get to squeeze in these phone calls when I have a spare second, often while "zooming" down the Edens en route to yet another appointment that you are going to deny in error, necessitating yet another phone call or hundred.

Do you really think that I WANT to order my 10 year old diapers? Take him to the eye doctor literally twelve days IN A ROW, including Thanksgiving? Drive to and from the OT/PT/SLP every day? Am I doing this for my own entertainment?

No, silly, I am doing this because it is medically necessary for my DISABLED CHILD. Why. on. earth. would. I. want. to. diaper. a. child. who. does. not. need. it? It is not enjoyable to diaper a 10 year old, nor is it fun to drag three exhausted six year olds to a therapy clinic immediately after a full day of school to pick up their big brother. It is not fun to put your 10 year old into orthotics, orthotics, that you never thought you would need, orthotics that you, Mr. Insurance Executive's Company gave PRIOR APPROVAL to but for whatever reason are deigning not to pay.

Silly, silly man. I am not asking for coverage for pointless unnecessary stuff. I get enough of that at Target and Marshalls. What I am asking for is only what Dovi needs to live and thrive to the best of his ability.

I never asked to have a disabled child. Frankly, if you had asked me when I was in high school if I had ANY interest in the disabled community, the answer would have been no. I was not one of those people volunteering every Sunday at Keshet (ahh the irony being that Dovi now GOES there) or visiting the hospitals, giving out gifts to sick children. I liked my neat little healthy, organized world. But life doesn't always work out as planned and the D entered my life when I was 20 years old (yikes!)

So, Mr. High Powered Insurance Executive, I ask of you, I beg of you. Please do not deny my medically necessary coverages. Please do not continuously deny the twelve visits to the ophthalmologist, including on Thanksgiving, that I HAVE AN APPROVED REFERRAL NUMBER FOR, continuously, over, and over, and over again, even though I have called 400 times, you have reprocessed the twelve visits incorrectly 400 times, thus sending us to collections for the first time in our lives (and hopefully the last), probably decimating our credit-good thing we've bought our house already!, making me well acquainted with Shirley at NPO Collection Agency-we speak about once a week, making me now have to call Chai Lifeline and get the Insurance Advocacy people involved.

WHY? WHY do you do this to us? Is it because you are hoping that by continuously denying MEDICALLY NECESSARY, PRE-APPROVED claims that you are hoping we'll all just say "oh, I guess my insurance didn't cover that, I'll just call and pay it myself"? Well let me tell you something, Mr. High Powered Insurance Executive. Us parents of disabled children? We don't do that. Unfortunately, we have learned one major lesson when dealing with our children. We need. to. fight. for. everything. for. them. So if you think we're just going to accept that denial and go away, you're wrong. 100%, unequivocally, wrong. We will fight. and fight. and fight. and ultimately win. Because we are fighting for our children. You're denying an ID Number. But behind that ID number is an innocent child, a child who needed those twelve ophthalmologist visits to save his eye when he had a corneal abrasion over 100% of his cornea.

So please just stop fighting with us. Help us. Work WITH us, not against us. We have a hard enough battle just to keep our children ALIVE and reasonably healthy. We pay for this insurance. Trust me, I would have much preferred a healthy child with no medical issues. But as I tell my children, "You get what you get and you don't get upset". This isn't what I asked for. It's what I got. Please don't fight me. Help me.


Savta/Imma said...

Your loving Mommy!

Perhaps you should publish this somewhere where others can see it and benefit from it. I just don't know where. Let me think about it.

Robin M said...

Yaaay Sarah!!! You ROCK!!!! And I'll bet it will work if you ever send it off.

Baruch & Miryam said...

fantastically well put...i agree with savta about publishing it - how about EP magazine...Miryam

licornell said...

You go girl!!!! Great Job love it.


Anonymous said...

Sara, I love your can say the same thing about access to anything our wonderful children have a need food--special education, government benefits, and so on.
Your avocacy Rocks & Dovi is lucky to have you as his advocate.

Anonymous said...

go you! maybe spirit magazine would want to publish it.

Debbieo said...

What a great letter! You have put into words what I have felt dealing with insurance companies for the past 6 years - thanks for saying it!!

Debbie Opatz

Anonymous said...

You go, girl! All I can picture is that little insurance guy in the Incredibles... go get 'em!!!

--TQ Renee

Anonymous said...

I.hear.your.frustration.oozing. from.every.word! As FD cousins, we share your frustration; you are not alone. If it's any comfort to you, our son's EOB's when stacked together, weigh more and are taller than him! With love, Ann

katie g said...

Awesome Sara! Your Opus really resonates with me, and I'm sure everyone who has had to fight their insurance company. I bet you could get it published - maybe in a parents magazine? Or one of those columns in a news magazine written by regular people. The insurance companies are adding unneeded stress to what is already a horribly stressful situation. Shame on them! There should be an easier way to resolve these issues than 100's of phone calls. I have been fighting for over a year over Alex's 2007 checkup. And that is just a regular kids yearly physical. I can't begin to imagine what you go through. Thanks for posting this!

Katie G.

elana said...

yay the comment worked! anyway once again you had me rolling. u r hysterical. definately worth publishing!

Savta/Imma said...

After reading all these wonderful comments I am more convinced than ever that this NEEDS to be published. Let's all put our heads together and figure out where. Spirit was a good idea as was a Parent's magazine. Anybody out there got any others? Maybe a medical journal?

Amy said...

Dude- they should know who they are messing with!!!
Great letter- and so sad that it takes parents so much extra effort to get their children what they NEED.


Anonymous said...

well said! From another mom with a child with special needs....I CAN HEAR YOU LOUD AND CLEAR!

fdmom said...

Love this! I think we all have said the exact same things to ourselves a gazillion times. The insurance companies figure that we'll eventually go away or get another job - thus "not their problem".

For publishing - Try Chicago Parent & the Tribune. I think both sections have a "voice of the people" or "essay" area. There might be a word limit but worth a shot. Love you - Barrie

Shosh said...

Wow. this was much more effective in getting the lurkers to come out than the other post was.

Insurance companies are the devil, and you could probably start a business where you help people navigate their claims. You definitely have the experience and youre not lacking in the willpower either.

Jacolyn said...

I love it!!!!

gracelevy said...

Brava! Be very proud of yourself, Mom. You are standing up for yourself and your beautiful family.
Caroline Levy
(Special Child Exchange)

Anonymous said...

What a great job Sara! Well said...
I would love to publish it in Spirit! Most of us parents feel the same way, x'cept we aren't as talented as you in expressing this.

I hope you did send it in to your insurance company.

Anonymous said...

You Go Sarah! While the subject matter is not funny in the least, I appreciate how you injected your sense of humor into the letter. Truly, you should send this to the insurance company - maybe that's what it takes for them to get the point. I am going to share this with many friends who, unfortunately, can relate all too well to your experience. Let us know what becomes of your blog, if anything.

Ellen (a fellow Raising Multiples co-moderator)

Ruth (from SCE egroup) said...

Way to go Sara! I love how you wrote with humor and intelligence. I hope many insurance people would see your letter so they could have a better understanding of our plight as parents of special children.

Cherice Lowry Mommy of Stacey said...

That's awesome I am definetly going to keep that and save it on my computer in case I ever need to whip out the big guns (being your letter). I am from the SCE group so I def. understand the struggle. Thank you for being such a good mommy to your kids. They appreciate it.

Deena said...

Oh, wow, Sara - that was awesome!!!
How about

Batya said...

Dear Sara,
Please have this printed, in Spirit as others have mentioned, but also send it to newspapers both secular, like the Chicago and New York papers, and JEWISH PAPERS like the Jewish Press and Jewish week, perhaps Jewish Action.
Although things work a little differently here in Israel, we have our battles, like trying to get approval for more 02 tanks, or
more dental visits (that insurance is private) or less copayments etc. Disabled people here do not pay copayment for doctor's visits or lab work if they qualify ( disabled enoulgh)
Shavua Tov and Shana Tova
Batya Berlinger

Liba said...

Well said!

I have cried more tears, both fury and frustration, over insurance messes than I care to count.

I would love to be paid for my time dealing with them as well. I wonder if we can get them to make the payments retroactively.

Hugs to you,


Anonymous said...

i would very much like this magnum opus to be sent to the commissioner for health insurance of the state of illinois and every other state of usa....these commssioners are after insurance companies that delay or excuse themselves from paying the doctor or for the patient...i hope that each state has such a new york there is a commissioner for health insurance in albany...the department has a team of people to investigate abuses of this also should be printed in exceptional parent will reach parents of all cultures in the united states ...all these parents suffer the same abuse from the insurance companies....

rickismom said...

(pruth of SFM group)
Well said!!!!
I am adding your blog to my reading list.

This piece should be sent out to every insurance company!

Anonymous said...

As always, you are my hero! You should be an advocate.

Piece o' Coconut Cake said...

You should be proud of your Opus! I can't even begin to imagine what you must go through-dealing with the insurance companies when you're healthy is bad enough! i hope your letter did get published. I think you should send it to every children's/parenting magazine around. The nice thing is that these days you can do it by email! Please keep us posted about your fabulous letter and where else it's been...good luck with everything!

Quiltqueen said...

I wish you were my mother--and I'm 53. I'm retired and living on disability insurance benefits and every six months the disability insurance company calls to ask whether I've got cancer or heart disease yet. You can almost hear the disappointment when they find out that I don't--I still just have the same damn chronic progressive neurologic autoimmune disease I've had for the past 15 years, that is not expected to affect my life expectancy and from which I am not expected to recover. And no, it wouldn't be a very good idea to discontinue my benefits because Social Security is paying me disability income which must mean I'm really disabled because they deny everyone. And then there's always the health insurance company (now Medicare) who wants to know whether it's possible that the bone problems that resulted in bilateral hip replacements and a spinal fusion might, just might, be the result of something like a car accident so someone else would have to pay.
By the way, I ended up at your blog because someone forwarded how to make kosher sushi to me and read your insurance letter because you worked so long and hard at it. You're a very special person--your kids are very lucky and I wish you all the best.

DESJ and Company said...

How do I find you?
I tried to open your blog but you had no posts!!!!
So lovely to meet you-my dad had sarcoidosis! It's a small, small world. Glad you enjoyed my post.

Adrienne said...

I know this is an old post but I really liked it. I have a 1 year old with Down syndrome and I know in the future I will be battling the insurance companies. I can relate to the therapies as well- they come to us now but won't in a couple of years. Like you I never really thought about people that were disabled. Also like you I had my perfect little organized world so didn't have time for things like that. Guess someone else thought differently:) Great post!

Ita G. said...

I know this is an old post, but I was just scrolling through your blog and saw it now.
Sara, what an amazing letter! unbelievable! awesome!