Sometimes things work out exactly how they are supposed to. Call it kismet, call it karma, call it dumb luck. For me it happened in 2017, when an organization called Children’s Rights reached out to talk about some work they wanted to do in Missouri. At the time, I had been working in the Health Policy area at Missouri Foundation for Health for 15 years and was always on the lookout for ideas that further our mission. Our work often involves the dismantling of systems that are not equitably serving all the people of Missouri. We call out dysfunction and invest in change to make systems better at supporting the conditions necessary for healthy lives.
When Children’s Rights came knocking, I already knew Missouri’s child welfare system had a problem with psychotropic drugs and kids in its care. And as a policy wonk, I was aware that this was a horrific problem nationwide. For children in foster care, psychotropic medications, especially antipsychotics, are often used as chemical straitjackets to control behavior – and not to treat the limited illnesses for which the FDA has approved their use in children.
The consequences can be serious. The incidence of type 2 diabetes for children given these drugs is three times as high as for children not medicated. They can cause other profound and even permanent adverse effects including psychosis, seizures, suicidal thoughts, aggression, weight gain, and organ damage. The grave harms flowing from psychotropic medications are exacerbated because these children often live with caretakers who do not have detailed knowledge of their trauma background, mental health needs, or medical history.
But my interest wasn’t just professional; it was personal. In 2008, my husband and I fostered a young man who became our son a year later. He came to us with minimal health or immunization records and four different prescription medications. That seemed like a lot for an 8-year-old. I wanted to find out if this made any sense, but finding a child psychiatrist was not easy. First of all, there was – and still is – a national shortage of child psychiatrists. Secondly, because my son was a foster child who was only eligible for Medicaid, the only option I could find was a doctor who held a clinic once a month in the St. Louis area.
What happened next was an eye opener for a privileged white guy. I remember sitting in that waiting room for two and a half hours with my Black child because everyone at the clinic was given the same “appointment” time and we were seen in the order we arrived. When we met the doctor, it was for a cursory 10 minutes. He had no interest in getting to know my son, asked no questions of him except what was his favorite video game and what activities he liked to do – and then promptly wrote out prescriptions for two psychotropic drugs. I was appalled. We did our own research, and over the course of about a year, my son was down to just one medication.
Missouri had a systems-problem related to psychotropics and foster children. Twenty percent of foster youth were taking an average of two or more psychotropic medications, and some were prescribed as many as seven medications at one time. And like other child welfare systems around the country, a disproportionate number of these kids are Black.
MFH invests in eliminating inequities in every aspect of health. We are changemakers. Everything we do is viewed through an equity lens, with an understanding that racial equity sits at the intersection of all other inequities. I was excited at the prospect of the Foundation supporting Children’s Rights’ work and was pleased when the grantee relationship started.
In the end, results speak for themselves. In December 2019, a U.S. District Court judge gave final approval to a settlement that is establishing better practices that prioritize the health and well-being of children the state has traditionally left behind. This groundbreaking victory is the first federal class-action lawsuit in the country to focus on the widespread and often dangerous use of psychotropic medications among youth in foster care.
Missouri is now implementing comprehensive reforms to protect children. Medical records will be monitored; doctors and caregivers, with real input from youth, will vet the risks and the benefits of medication before it is administered; an independent child psychiatrist will provide secondary review of prescriptions for efficacy and safety; and caseworkers will be trained on the appropriate use of these medications.
There is still much work to be done. Changing systems takes time and isn’t always easy. But the progress is huge. And I’m always left hopeful and amazed by all the individuals and organizations working to make Missouri a just and equitable place for us all.