By Nadia Webb.
Yesterday the parents of a profoundly gifted boy told me that I had spent more time talking with them than with the prior three specialists they had seen combined. We had just crossed the 90-minute mark when they said this. By the end of the two-day assessment, they had spent two hours each day helping me understand their son, including what they had tried before, what had worked, and what had not. These were smart parents who had tried the obvious solutions and didn’t need to hear them again from me. At the end of our four hours of conversation and two days of testing, I felt we had made a big difference in the life of this boy and his family.
Yet this was only possible because these parents had been willing to make the expensive choice to have the assessment done. We would try for as much insurance reimbursement as we could, but it is likely that only a portion of the bill would be covered. Parents who want a deeper understanding of their child, instead of a quickie diagnosis du jour or a reassuring pat on the head, often pay dearly for it. And psychologists, pediatricians or psychiatrists are on the other side of the same equation: when their time isn’t reimbursed, they are forced to balance their livelihoods against their ethical obligations.
The parents who were in my office yesterday had seen doctors who attempted to diagnose their child in less time than my mechanic takes to diagnose what’s wrong with my car. Captive to the 15 minute time slot (which is what your insurance company pays for without a battle), you better hope your child doesn’t have anything more complicated than chicken pox, strep throat or an ear infection.
Did you know that one of today’s most common diagnoses –ADD – is supposed to be a diagnosis of last resort? It is a diagnosis “of exclusion” that requires ruling out learning disabilities, anxiety, depression, psychosis, lack of academic challenge, problems at home, obsessive compulsive disorder, physical illness, etc., etc., etc. In 15 minutes, I can barely get my oil changed. How can one expect a doctor to understand the emotions, abilities and history of a child in 15 minutes?
Often when we talk about misdiagnosis, we highlight poor quality care and thoughtless professionals, yet it shouldn’t overshadow our systemic problem. Much of the medical care is being driven by phone calls to insurance companies where well-intentioned twentysomethings approve or reject treatments based on computer protocols. Rules of thumb work fairly well for typical people with typical problems; they fail miserably the farther the person, procedure or problem drifts from typical. Gifted children aren’t exactly typical kids with typical problems. Because of this, they are canaries in the coalmine. They highlight where a system is flawed.
I’ve found that being trained in psychology and having previously run an insurance authorization line hasn’t given me much of an advantage over any other smart parent. Recently, I gave in and hired a billing specialist – a decision I had fought for years because I believe that getting reimbursed for reasonable, well-researched procedures using established codes and diagnoses ought to be easy. But each plan in each insurance company is utterly different; there is no consistency and the average insurance company has between 50 to 100 different plans. I found myself spending less time practicing neuropsychology and more time learning corporate quirks. I finally decided that I would rather focus on being a good neuropsychologist.
Sometimes I fantasize that the brilliant children who come through my office will avenge me. Their stubborn persistence, power struggles, and their keen eyes for details, if directed at the insurance companies and not at their parents and teachers, could reform the whole managed care empire. In the meantime, please consider sharing stories and concerns with your legislators. Although we often feel like small voices in a big world, Congress People often consider two calls or emails from constituents as “significant.” Www.congress.org provides all of the links to your senators and representatives.
Nadia Webb is a practicing neuropsychologist, step-mom, and co-author of Misdiagnosis and Dual Diagnoses of Gifted Children and Adults. Her term on the SENG Board began in January of 2011.