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.

Comments

[Deane Waldman - Huffpost Blogger]

See Deane Waldman's Profile

Kim,
This is NOT written in defense of the insurance companies, quite the contrary, but they are just doinhg their job. Their primary function is to make money and under our current system, they do so by NOT providing care. We measure success in healthcare by how much money we do NOT spend.
The solution is to begin tracking and paying money for activities that produce the positive results, the ones we DO want. In your case, the desired outcome is a child (children) who can communicate and interact with our world. I am a pediatric cardiologist. For a patient of mine with transposition, the cost of care in the first month of life is generally $100,000-250,000. Needless to say, insurance companies would love not to pay this. They would behave differently if the system openly recognized that in return for a quarter of a million, the country acquired a healthy citizen " a "production machine" " that will be worth [triple net] over $2 million to our nation during that citizen's lifetime.
Time to change the system to make it behave in ways that coincide with what we want, rather than giving incentives for what we don't want.

[Stagmom]

Dr. Waldman, thank you for your insightful comment. I agree with you 100%. Yes, the system is broken. No doubt about that. More than ever, when profits are at stake, consumers lose.

I also think MD's have allowed the insurance AND pharmaceutical industry to highjack medicine. I don't know how it happened. I don't know why it happened. But there is so little knowledge of preventative care - it's all prescription drugs and 12 minute appointments.

I have a young friend who is a PA. She interviewed at a peds practice where they schedule 8 minutes per appointment. 8 minutes.....

Broken beyond repair? I just don't know.

That said, I'd still like to get therapy from Bella.

Hope to see you on my future entries, here, Dr. W.

Best,

KIM

[jlu626]

Great post and a sad reality for 99.999999% of families dealing with an autism diagnosis. It is just outrageous that our loved ones are denied treatment. Thank you for using your influence to shine the light on this huge injustice.

[mogrammy]

terrific article, Kim. Of course, this bias applies not only to speech therapy but a host of other therapies for our kids. Even some of the states that have already passed madated legislation--there are a number of exemptions tacked onto the bills that still make it difficult to get coverage.
A pox on them.

Maurine Meleck
South Carolina

[Stagmom]

A pox on them? No problem, there's a vaccine for that... ;)

KS

[foe2Hg]

Great piece, Kim! I went through the habilitative vs rehabilitative bullshit for years until they pulled the plug. The insurance industry will keep you calling and sending letters until your child is finally in school and then they can say "all done" and it is now the school's job. Our kids deserve these services to give them an improved quality of life.

[linlou34]

My son was denied coverage when he was diagnosed. We had 2 health insurance policies. I dropped mine when they denied him. Now, my husband's ins. is denying him too. I do not receive much services for my son, We could not afford it. I would like to know if other countries are as bad as ours for this? I tried to get SSI for my son, they have denied him 6 times. When I contacted 4 different SSI att.'s they all said the same thing, the rep.'s are hired to deny services. They are hired to tell you that you do not qualify. They say, well if you had less income you would. Well, I got fired from my job, because the company I worked for did not want to comply with the FMLA law. I applied again, they said well now you fall into a different income level bracket, and you still do not qualify. My husband is on lay off, so I applied again, still do not qualify. It is crap!! One lie after another. No help, for the people who really need it. Yet, I know people in far better shape than us get help from all over. Why, maybe cause I do not lie to get help!?! Why, do some get and some get nothing? My son does deserve the same as any other kid.

[nhokkanen]

Insurance companies' denial of essential services for your children is downright perverse. Until recently not many parents had the time and energy to become "squeaky wheels" and wear down the bean counters to get claims coverage so our kids can learn to talk. Luckily we families are finding each other on the Internet and marching en masse on our state capitols. Sometimes the glacial pace of change is discouraging, but walking away empty handed is inconceivable. Bravo, Kim!

[missionautism]

In Florida, we are close to getting a bill passed that would require services to be paid for, by the state's children insurance plan at first and by regular insurance plans within 2 years. As more and more families face this stress and more children do not receive the help they need in time, it only creates a bigger burden for care from ALL of society down the road.

Let's work to gets laws passed in EVERY state to ensure care of kids with developmental disabilities including autism. The cost is there regardless, let's help them see that paying it up front for therapy and real medical care (versus later for care and home living) will save money and children.

These kids are worth it! We have to convince the legislature b/c greedy insurance companies will never do it on their own. Find families in your state and start working on insurance bills. Several states have passed them already. Together we can end this outrageous practice. Why should we pay premiums to avoid other people's catastrophic medical costs when they deny coverage of ours?

Lastly, I have Florida BCBS. Or Kim would probably call it BSBS? Thanks Kim!

[Stagmom]

How about Poo Cross Doo Shield? LOL! You guys have worked hard in Florida. Even CT is heading toward passing legislation. But I'm old and jaded and still think the insurance companies will find a way to say no, or just provide services to the youngest kids or require every child to eat a whole wheat sandwich and a glass of milk at every appointment or some other whack in the head. Let's face it, insurance companies stand to shell out a TON of money for these services. They aren't going to submit easily. Keep fighting the good fight and thank YOU.

K

[Gatogorra]

Thank you for shedding some light on that and I laughed out loud at your nicknames for insurers. Ugly, ugly, ugly situation.

We pay out of network for everthing and most isn't covered at all. We could afford more if we gave up our house but, since renters' rights are barely protected in our state, actually owning a home is the only way we can avoid being kicked out of one, what with the prelingual screaming that sometimes goes on here.

I'm wondering what's going to happen during the next administration. I have a feeling things are going to change a lot. They'd better.

[amdachel]

"These insurance companies have already decided that our children will never catch up in speech. "
Those heartbreaking words are a chilling forecast for the future. Kim's daughters will not be little girls forever. The insurance companies may save money now by refusing to cover therapy for kids with autism, but that simply means they're passing the cost on to the taxpayers.
When all these children age out into adulthood with so few life skills, what's going to happen to them? How can they ever be productive when nothing was done to help them communicate effectively.
The day is fast approaching when Kim's daughters and all the other children written off by insurance companies will be going on Social Security Disability
for life with autism. This will not be just the parents' problem.
Taxpayers will demand to know why nothing was done to help these children when
they were growing up. I wonder how the American public will react when they hear that the insurance industry put saving money over providing therapy?

Anne Dachel
Media Editor
Age of Autism

[mcewen]

I should like to formally stand on my foreign soapbox and recommend that everyone watch Michael Moore's Sicko.........

That aside, I agree that we have also 'enjoyed' be members of half a dozen Medical Insurance Companies. Rather than reiterate your experiences, I can confirm that we're more or less a match.

There is one point with which I take a very strong objection - $100 for a speech therapy session! Madness I say, or did you mean only half an hour?

Best wishes

[BarbaraFischkin]

Critically important article Kim.
Far as we can tell insurance in New York stopped paying for Speech and Occupational Therapy for kids about 12 years ago as the number of diagnoses started to rise. It is all about money not health care.

[SusanSenator]

The same problem exists for kids who seek psychiatric care for their autism issues. It is frequently not covered under "medical" or "mental health." Psychopharm for autistic people is neither fish nor fowl. Barbara is right; it is all about money, not health care. Great piece, Kim.

[Stagmom]

Hi, Susan. You're right. This is yet another slap at our kids. To your point, the fact the psychiatrists "own" autism (look at the major players at Autism Speaks, formerly NAAR, they are psychiatrists!) makes it doubly insulting that there's so little mental health care for our kids from the insurance companies. I mean, how can that be??? Autism is a defined as "behavioral" diagnosis "other psychoses" in the DSM (let's not get me started there, shall we?) and yet there's no behavioral care offered to people with the diagnosis. As soon as the insurance company sees any code starting with 299.XX they laugh and say, "Heh, heh. this kid won't cost us a nickel!" It's astounding. I know Autism Speaks is working hard on insurance coverage. As are many individual families, like my friends Wayne and Robyne Rohde in Oklahoma. Whatever treatment path we choose for our children, we deserve insurance coverage. They deserve coverage. Autism should not mean "cast aside."