A Government Guide Helps Foster Kids Ask Sharp Questions About Meds

August 23, 2012

Morning Zen Guest Blogger – Kaitlin Bell Barnett
In the pitched debate about treating kids with psychiatric medications, one relatively small but prominent group keeps capturing the headlines. Study after study has shown that the country’s approximately 425,000 foster children are far more likely than their peers to be prescribed drugs for mood and behavior problems. In just one prominent recent example, a December report from The Government Accountability Office that looked at 100,000 foster children in five states found more than a quarter were taking at least one psychotropic drug – a rate 2.7 to 4.5 times higher than their peers on Medicaid.

In many cases, psychiatric drugs in foster care may be justified. After all, foster children are wards of the state precisely because they’ve been neglected or abused, conditions that increase the risks of psychiatric disorders both in childhood and later in life. Frequent transitions between foster placements can create further stress.

But a major reason medicated foster children keep capturing the headlines – and our collective imagination – is that they are a particularly vulnerable group. Without parents to protect them, we worry that that they will be drugged into submission by overwhelmed state systems that don’t have the resources or the patience to prudently weigh the best care for each individual child. The GAO report, for example, found hundreds of foster children taking five or more drugs at once and thousands being prescribed drugs above the maximum recommended doses, practices not supported by clinical guidelines or scientific evidence.

Initiatives around the country have worked to put safeguards in place to protect foster children from wanton prescribing. But a recentlyreleased resource from the Children’s Health Bureau,  a division of the federal Department of Health and Human Services, is noteworthy and important because it takes a different tack.

“Making healthy choices: a guide on psychotropic medications for youth in foster care” aims to give foster children the information necessary to look out for their own best interests when it comes to mental health treatment. The guide, appealingly illustrated and written in plain, accessible language for pre-teens and teenagers, can’t magically fix the systemic problems that contribute to such high rates of psychotropic prescribing. Nor is it likely to help children who are too young or too disturbed to absorb its advice. But it is a wise and much-needed step toward molding troubled and vulnerable kids into well-informed self-advocates.

If state welfare systems can actually get this guide into the hands of medicated foster children and those at risk of being medicated, it would serve as an invaluable resource for a population of young people who are often left out in the dark when it comes to decisions about their mental health care.

Featuring what seem to be real-life stories from medicated foster kids and addressing young readers directly in a conversational tone, the guide emphasizes that foster children “have options” when it comes to their mental health. It stresses children’s agency casting them, not as a passive receptacles for pharmaceutical treatment doled out by authoritarian adults but as active participants in their own care. The focus is on improving kids’ quality of life, with the guide advises kids to seek a mental health evaluation “if you are having symptoms that are a problem for you.”

Medication is one tool in a large toolbox of methods for helping foster kids live life as they themselves want to live it, the guide explains. It discusses other strategies – including healthy eating, exercise, meditation, counseling and therapy, support groups, and hobbies – as either alternatives or additions to medication treatment.

Perhaps even more importantly, though, the guide arms foster kids with lists of questions to ask themselves, trusted adults, and doctors that will help them tell if they might need mental health treatment, whether medications might be warranted and how to monitor and optimize their pharmaceutical care.

The proposed questions about the effects and logistics of taking medication are extensive, comprehensive, and easy to understand, but far from obvious or trite. They include queries about whether treatment can be ordered; who has the right to consent to a child’s being medicated, youths’ rights to refuse medications and the consequences of doing so; whom to talk to if child disagrees with a decision about treatment; whether they have a right to a second doctor’s opinion; who will be informed about the child taking medication; whether taking medication might make it harder to get a job or join the military, and what rights kids have to see and have access their medical records.

As I read the guide, I kept thinking back to a young man I profiled in my recent book, Dosed: The Medication Generation Grows Up, about kids’ experiences of psychiatric drugs. This young man, whom I referred to as “Paul” in the book, was prescribed meds from the time he entered foster care at age 5 until he finally worked up the courage, just before he turned 18, to explain to his doctor that the drugs did nothing to control his behavior, and made him feel sluggish, slow, dull-witted, and completely unlike himself (he had, in fact, secretly quit the antipsychotic drug Seroquel a couple of years before confronting his doctor).

Paul had been diagnosed with ADHD and bipolar disorder, but these diagnoses were not explained to him, at least not in a way he could understand. And the reasons for the medications made no sense to him: Various references by his doctors, therapists, caseworkers and teachers led him to conclude that Ritalin and, later, a mood stabilizer called Tegretol and then the antipsychotic Seroquel, were supposed to allow him to better control his aggressive and hyperactive behavior.  But whether he took the medications or not – and he experimented on many occasions with not taking them – Paul always felt in control of his actions.

Paul’s chief complaint, in retrospect, was that no one explained his medications to him, or gave him a chance to express how he felt about his treatment. This came into particularly sharp relief when he developed diabetes from taking Seroquel. Thrust upon him without his being consulted, Seroquel and the other medications left Paul feeling devalued, disempowered and embittered.

In reading “Making healthy choices,” I kept wishing it had been available for Paul back when he was a young teenager chafing against his medications. At the very least, I suspect it would have armed him with better ways to communicate with the many adults in his life who had a say in his treatment. Perhaps it would even have helped him forge a less contentious, more productive relationship with his medication, one that, instead of harming him and souring him on treatment, might actually have put him on a path to healing.

kaitlinKaitlin Bell Barnett is a journalist and blogger based in Brooklyn. Her first book, Dosed: The Medication Generation Grows Up, came out in April from Beacon Press.  It examines the experiences of young adults who came of age taking psychiatric meds. She also blogs on the subject at PsychCentral.

Her work has appeared in Salon, The New York Observer, Parents, The Huffington Post, Gastronomica, Prevention, InTheFray, Hungry, The Brooklyn Rail, and The Boston Globe, among other publications.

Kaitlin has been interviewed by several dozen regional and nationally-syndicated radio stations, including Radio Health Journal, Americas Radio News Network, and Wisconsin, New Hampshire and Boston Public Radio. In addition to other TV appearances, she has appeared on C-SPAN’s BookTV to discuss Dosed. She has also been interviewed by Ladies’ Home Journal, Metro-US, Italy’s La Republica newspaper and Canada’s Maclean’s newsmagazine.

Kaitlin grew up in Williamstown, Massachusetts, and attended Columbia University’s Graduate School of Journalism School and Dartmouth College, where she served as executive editor of the independent daily student newspaper. From 2005 to 2007, she worked as a reporter at The Monitor, a daily newspaper in McAllen, Texas, on the Mexico border. There, she covered city government, politics, schools, crime and general assignments.

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