04/24/2008 09:40 am ET | Updated Nov 17, 2011

Stigma Healthcare: Shut Up Kid!

We have new health insurance. It's just like our old health insurance. A lot of money for very little return. Let's see, we've had "Aetna, If you have autism we'll forget ya." We've had "InHumana." We've had "Useless Healthcare." And now we have "Stigma."

Are we trying to score medical marijuana? Did Mr. Big Bad Insurance Company turn down my request for a medically necessary month at Canyon Ranch? No. I wanted speech therapy services for my seven year old with autism so I could hear her say "Daddy" and my insurance company said, "Drop dead."

Speech therapy is not covered for people with certain diagnoses, including autism, by most insurance companies. Why? Because these insurance companies have already decided that our children, including the beautiful girl you see here, will never catch up in speech. They don't believe my Bella or perhaps your son or daughter even deserves speech. I spoke about this travesty on Good Morning America (watch here.) This is an insurance company's take on our kids straight from the Stigma manual:

Speech therapy is generally not appropriate for use in prelingual children when there is no identified underlying medical condition or there is no possibility of the child reaching an age-appropriate level of speech (e.g., speech therapy for learning disabilities, autism, developmental delay or mental retardation; therapy provided for aversion to food, the inability to construct sentences, stuttering or tongue thrust) (Johnson, 2005; Bressmann, 2005; Kroll, 2005).

I can't understand why the value of speech therapy simply disappears when it comes to insurance. My girls (who have autism) received speech therapy through Early Intervention. And speech therapy is a critical part of their school plan (called an IEP.) Sure, parents can pay for private speech therapy, and many do! But at over $100 per hour, how much should a family who is paying dearly for health insurance have to kick in above and beyond premiums and co-pays?

Speaking is difficult for my girls, most especially for Bella who is "prelingual" -- to use Stigma's ridiculous term. Her inability to speak has to do with something called "oral motor planning." No, that's not a class in how to service the former Governor of New York while in the backseat of a Town Car. It means a child's brain can't seem to tell muscles of the mouth how to wriggle into position to make sounds.

Then there are the labyrinth rules of syntax and grammar that so often elude our kids. Pronouns? Fuggedaboudit. Many kids on the spectrum sound like the Seinfeld character "Jimmy," Elaine's boyfriend who only spoke about himself in the third person. My Gianna, who has the most speech of the three kids, often refers to herself by name. And our eldest, the gorgeous Mia, tends to put an article in front of names so that I am, "THE Mom." (Darn right, kiddo!) When she greets her father, she says, "It's the Daddy."

There are ways to navigate the insurance system to secure benefits. Many kids have medically necessary speech issues that are covered. Of course, then you run into the visit limits. Our kids need therapy for a long time. Twenty visits isn't going to be enough. And if you figure out the insurance coding and can secure the visits, you have to work within the "network" which rarely includes therapists trained in working with kids on the spectrum. Many parents give up in disgust, realizing there's little benefit to working with an SLP who's a generalist. Of course, going out of network means greatly diminished reimbursement and monster deductibles.

There is progress in including autism in the insurance world. Some states are mandating coverage. Some states are fighting like heck to avoid having to add autism to the list of insurable diagnoses. But I'd guess that insurance companies are devising new ways to deny our kids coverage.

I'm not ready to write off my girls. Not now. Not ever. They might not be able to speak for themselves (yet) but I can give them my voice. In fact, I think I just did.