FARGO — As a troubled foster kid bouncing from doctor to doctor, Deborah Zaun worried about the long-term effects of being on so many mental health drugs.
“Every doctor I went to diagnosed me with something different. It was a confusing time for me in foster care because I thought I was just a big problem. I didn't know what was wrong with me and thought everyone was against me,” she said. “I thought I was never going to be normal because they put me on all these pills.”
Zaun was placed in foster care in the Fargo area when she was 6 years old. Before adoption at age 12, she said she was cycling through counselors and at one point was on a dozen different mental health drugs, also known as psychotropic medications.
Zaun, now 25, only takes two medications for depression and post-traumatic stress disorder. Her experience with psychotropic drugs in foster care is not uncommon, especially in North Dakota.
The state has the highest rate in the country of foster care children on these medications most commonly used to treat depression, bipolar disorder, PTSD, schizophrenia and anxiety.
A report released by the Office of Inspector General for the U.S. Department of Health and Human Services last year found that more than 37% of foster care children in North Dakota, or 1,021 out of 2,734 children, were on psychotropic drugs. The report was based on numbers from 2013, and focused on five states with the highest use of psychotropic drugs among foster children.
The inspector general and advocates find this rate concerning because there is a lack of effective treatment and monitoring that increases the risks of inappropriate dosing of drugs and combinations of drugs with serious side effects.
Samantha Bartosz, deputy director of litigation for Children’s Rights, a national watchdog group advocating for abused and neglected kids, told The Forum in a phone interview from her office in New York City that the report brings public attention to the issue of states not safeguarding foster kids.
"There's a lot of science on how these drugs work on the brain and central nervous system. They create profound and sometimes permanent changes, and yet, they are delivered without any consistent oversight," Bartosz said. "A foster child gets on a drug, moves homes two or three times and collects different prescriptions along the way. It's not unusual."
Bartosz said the high usage rate in North Dakota could be a result of not enough providers or therapeutic services. "It is lower density, so it can be a real challenge to attract a sufficient number of mental health providers to really get the job done," she said.
Tami DeCoteau, a Bismarck psychologist specializing in trauma-informed care, agrees the state lacks mental health providers.
"If you don't have access to quality care that's collaborative and integrated," she said, "what else do you do but turn to the medications?"
DeCoteau works with foster children who have experienced multiple traumas, from in utero all the way into childhood when they are traumatically separated from their family.
"Children in the foster care system typically have a broad range of traumatic experiences, and the severity and intensity can be higher than what we see in the typical non-foster care child," she said. "Treatment needs to be broad and needs to be longer term and more intense, not just psychotherapy and medication, but physical and occupational and academic support."
The basis of trauma-informed treatment is about supporting the body to support the brain. Strategies are basic things, like adequate sleep, constant hydration and movement. DeCoteau said children first and foremost learn how to regulate the body through safe relationships. Caregivers are encouraged to provide healthy snacks every two hours and movement breaks every 90 minutes to promote a child's success.
It's all about "rebuilding the brain," she said, and by doing so there is more long-term effectiveness that may reduce the need for medication. "As much as we can reduce the need or how long they need to be on drugs is better for overall development," DeCoteau said.
Bartosz said states need to build up their capacity of trauma-informed mental health care and develop therapy approaches that are truly trauma-informed. She said too often children are not seen by a mental health specialist and instead therapy is done through a general practitioner.
Foster kids have traumatic pasts, and the "scars of that manifest in their behavior," she said. While drugs may be needed, it's important to provide services that address the trauma, she said, "rather than give a drug that helps them and their behaviors, but masks the underlying trauma."
Because foster children are transient, Bartosz said, their medical history becomes very fragmented. She said it's essential for states to have a database to share comprehensive medical information. The system should have red flags alerting staff of potential problems, such as when a child is on more than one psychotropic medication or is in need of review.
The North Dakota Department of Human Services has such a system, which streamlines the sharing of medical information, said Dean Sturn, foster care administrator for the state department.
Bartosz's organization has filed a lawsuit, M.B. v. Corsi, in Missouri where she said foster kids are overmedicated on psychotropic drugs that aren't properly monitored. The lawsuit is named after a 14-year-old boy in foster care who was on more than six psychotropic drugs without review or an updated health record, resulting in side effects like hypothyroidism and suicidal thoughts.
"Hopefully other states take notice, and where states don't, we may find other opportunities to be the spark," she said. "It doesn't have to take a lawsuit. It's the right thing to do."
Signs of progress
The North Dakota Department of Human Services provided data to The Forum that shows a decline in the percentage of foster youth — ranging from birth to 21 years old — receiving psychotropic drugs.
Based on North Dakota Medicaid claims data, 31% of foster youth in 2015 were prescribed psychotropic drugs. In 2016, that fell to 30%, and in 2017, the most recent data available, 25% of foster youth were receiving the drugs. The state's data is different than the data used for the inspector general report and not a direct comparison.
Sturn said North Dakota has made strides in reducing the rate of psychotropic drug usage. Asked why the state could lead the nation in prescribing such medication to foster youth, Sturn pointed to the lack of mental health services.
“In the absence of services, especially for children, sometimes the way to treat them are putting them on psychotropic medications to help with symptoms,” he said.
Sturn also noted that kids in foster care are more likely to need psychotropic drugs than children not in the system.
“It’s not rocket science. It's pretty easy to understand that kids entering the foster care system have experienced exponential amounts of trauma as compared to ... children who aren’t,” he said.
Out of the work of a health care oversight committee formed in 2014, Sturn said some changes were made to enhance treatment. Every child entering the foster care system needs to have a screening that looks at physical, dental and optical health, with the mental health screening portion strengthened, he said.
A federal law requires that a foster child is seen by a caseworker at least once a month, he added, and caseworkers must go through four weeks of training that includes a segment on trauma-informed treatment.
Sturn said any way the state can figure out ways to help a foster child without medication is the goal.
"It's no different than if I can control blood pressure through diet and exercise, " he said. "Don't put a chemical in if you don't have to."