Wednesday, May 7, 2008

Bumper sticker politics

We've tried to treat the blog like a dinner party with your mother's friends: Keep it chipper, chatty and avoid talk about God or politics.

But we're unwillingly becoming a bumper sticker for healthcare reform.

The bureaucrats drove steel-nerved Mo near tears yesterday. We've spent the last few months waiting for our geneticist to forward his mammoth report documenting every stray hair and malformed bone to the state. We need it to qualify for supplemental insurance that picks up items our regular policy does not, such as hearing aids.

It's not exactly a bargain: $2,400 a year. If the cost doesn't give pause, the paperwork does.

The geneticist gave them about 50 mind-numbing pages. They want more. It's not enough to be diagnosed with Cornelia de Lange Syndrome, with all its attentive problems. They need documentation from four specialists listing why Hope should get something that's outrageously expensive and we hope to hardly use.

So it's another week of faxes and phone calls for Mo to prove that CdLS presents a host of issues, even though a Google search of the syndrome would reveal the answer in about 0.62 seconds.

That's annoying. What's more so is that we could have saved months of hassle if someone told us months ago. When Hope flunked her hearing test in the hospital, we received three phone calls from government social workers within hours. When she was diagnosed with CdLS, no one did, leaving Mo to navigate a dizzying bureaucracy on her own.

She's done a good job, but sometimes spends entire afternoons on the phone doing battle with receptionists.

The good news: CdLS kids at least qualify for supplemental insurance. Kids with Down's and some other syndromes don't, no matter how severe they are. So go the vagaries of health care.

Better news: We only need to do this once. Once Hope's in, she's in for good.

But oh what a hassle to get there.


Misty said...

although our insurance situation is a bit different, we are going through the same battle here... mostly because the genetecists won't proclaim cdls yet. it has been so frusterating to me. i have even called them to pretty much beg to get the diagnosis.. i have already listed him as having it as far as paper work goes and i found out today that i could lose the coverage we have if i declair him cdls and he has not ,in fact, been officially diagnosed. it is enough to make my head spin and have me rolling on the ground in a monster fit. i hope that you get all of the answers you need and the coverage soon! BIG BIG hug to Mo...i have been there as far as phone battles. i feel like i am on the phone constantly!! it isn't just a few minutes, it takes all day!! give hope a squeeze!

Karen said...

How frustrating! Our experience was a little easier in Pennsylvania - they did not require ridiculous amounts of documentation, thank goodness. I think we just sent in letters from his geneticist and pediatrician, as well as a copy of his NICU discharge summary. Ben had supplemental Medicaid by the time he was about 3 or 4 months old; we have to fill out a form each year to have it renewed. It also doesn't cost us anything extra - it's unbelievable that you have to go through all that and still pay a big premium. As if having a child with special needs isn't challenging enough! One would think they would try to make the process a little easier for parents.

Brooklyn Salt said...

That sucks. I'm really sorry. It makes my healthcare insurance battles look downright trivial.

So when you have lemons, you need to make lemonaide. That being said, if you wait a few months, the next president will fix the broken healthcare system. Hillary, Obama and the old guy all promised reform!