Welcome to Spirit Magazine

Fall 2008 Vol 7 / No. 1

Yedei Chesed is a contract agency certified by the New York State Office of Mental Retardation and Developmental Disabilities.

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 Porush 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 (www.familialdysautonomia.org), 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 (www.porushjewelers.com), put the addition we need onto our house, 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 road en route to yet another appointment that you are going to deny in error, necessitating yet another phone call or a hundred.

Do you really think that I WANT to order diapers for my 10-year-old? 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 coverage. 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, now I 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. The parents of disabled children don’t do that. Unfortunately, we have learned one major lesson while 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.