Arizona heightens oversight of medications for foster children

After being diagnosed with bipolar disorder, she was put on antidepressants and anti-anxiety medications and stayed on them for seven years. But she says her emotional problems were related to her childhood trauma, not mental illness. The medications numbed her pain and anger, she says, and prevented her from learning how to deal with her emotions — or even knowing how she felt.

“I constantly felt stoned and high,” says Luna, now 28, who has since been diagnosed with post-traumatic stress disorder. “You’re never given the chance to properly grow. ... Therapists ask, ‘How’s your medication?’ Not ‘How are you?’”

Arizona foster children were 4.4 times more likely than nonfoster children on Medicaid to be prescribed powerful psychotropic drugs, a report based on 2008 data found.

Arizona hasn’t updated that report, but the number of foster kids on psychotropic drugs likely has grown along with the state’s foster-care population: Between March 2008 and March 2014, the number of Arizona children in foster care soared by 62 percent from 9,721 to 15,750. Child-welfare advocates attribute the growth to deepening poverty leading to more cases of neglect.

When used appropriately, psychotropic drugs — which affect mood, thought or behavior — can be lifesaving, experts say. But some child-welfare advocates say the drugs can be prescribed more for the convenience of overwhelmed caregivers than for the benefit of the child.

“I see youth that are so overly medicated that they’re literally drooling,” said Christa Drake, former executive director of In My Shoes, a mentorship program for foster youth. “Sometimes it’s like, ‘Let’s just medicate him and subdue him so we don’t have to deal with the behavior.’”

This year the state implemented new oversight and heightened reporting requirements regarding prescriptions for foster kids, said Steven Dingle, chief medical officer of the Arizona Division of Behavioral Health. As of January, “regional behavioral health authorities” — organizations that coordinate behavioral health care for foster kids — must regularly submit data on medication utilization rates among foster kids. The behavioral health authorities will also monitor the prescribing habits of doctors in their region and identify outliers.

In addition, doctors must now get authorization — attesting they first tried psychosocial interventions like therapy — before prescribing the following:

• antipsychotic or ADHD medications for children under age 6;
• any psychotropic drug at a dosage level exceeding FDA recommendations;
• more than one antipsychotic or antidepressant simultaneously.

The state has also formed the Arizona Psychotropic Monitoring Oversight Team, a partnership between the Department of Child Safety, AHCCCS and the Division of Behavioral Health Services focused on ensuring appropriate prescribing, Dingle said. The team plans to replicate the study on psychotropic prescriptions among 2008 foster children with more recent data, likely within the next six months, he said.

Normal behaviors

Despite the new reporting requirements, some worry medication use could increase as Arizona’s child welfare system is stretched.

Last November, the Arizona Department of Economic Security admitted that its Child Protective Service division failed to investigate more than 6,500 reports of abuse or neglect, in part due to sky-high caseloads for CPS caseworkers. CPS oversight was taken from DES and given to the newly created Department of Child Safety in May.

Heavy caseloads leave caseworkers, caregivers and doctors with less time to concentrate on each child’s medication regimen. A foster family shortage also means more children are in group homes, with less individualized attention, increasing the risk of fragmented oversight of their care.

“The system remains ripe for medication misuse or overuse,” says Sen. David Bradley, D-Tucson, who worked in child welfare for 20 years.

Finding solutions other than medication takes resources, time and patience, said Drake, formerly of In My Shoes. Foster children need stability and a safe space to explore and express their emotions, she said.

Instead, lots of kids get a diagnosis of conditions like “oppositional defiance disorder” when they act out, she said. That diagnosis can sometimes medicalize normal behavior, she said.

“Most people would be upset if they were ripped away from their families and sent to live in a group home,” she said. “A lot of our youth are acting appropriately in their surroundings.”

Foster kids with complex needs are often bounced between therapeutic and regular foster homes as their behavior stabilizes, then deteriorates again, said Sarah Huntoon, foster program director for Intermountain Centers for Human Development, which trains and licenses therapeutic foster homes.

The more transitions, the more instability for the foster child — and the less likely he is to have a familiar caregiver who will notice and report concerns about medications.

“Consistency of care is an issue,” she said.

Trauma is a given

Experts say it makes sense that kids in foster care have a higher rate of psychotropic-drug use than other kids.

Between 60 and 80 percent of foster youth have at least one psychiatric diagnosis or developmental disability, compared with 15 to 20 percent of the general population, said Dr. Sandy Stein, associate medical director of Community Partnership of Southern Arizona, the Regional Behavioral Health Authority for Pima County. The authority coordinates and manages behavioral health care for children in the child welfare system.

Some of those diagnoses in foster children are related to lack of prenatal care, to parental substance abuse or to a family history of mental illness, Stein said.

Lengthy stays in foster care, or transitions between foster families and group homes, can add to a child’s sense of instability.

“These kids have been traumatized,” says Susie Huhn, executive director of Casa de los Niños, a social-service and foster-care agency in Tucson. “The very fact that they’re in the foster care system means they’ve been exposed to toxic stress and traumatic events — so why wouldn’t we expect they’ll have more social or emotional issues?”

But some worry about questionable prescribing practices. Among the 2008 psychotropic drug report’s findings:

• Foster kids were nine times more likely than nonfoster children to be prescribed five psychotropic medications at one time. Almost 800 children, or 5.4 percent of the foster population, were taking two or more drugs. Only limited evidence supports the use of even two psychotropic drug in children, and no evidence supports children — or even adults — taking five at once, according to the U.S. Government Accountability Office.
• Arizona foster children ages 5 and younger were 5.5 times more likely than nonfoster children to be prescribed at least one psychotropic medication. That year, 225 Arizona foster children 5 and younger were prescribed the drugs.
• The state’s foster kids were 7.4 times as likely to be prescribed the drugs in doses exceeding the maximum recommendation for their age group.
• Fifty-five foster children ages 1 and younger got a psychotropic prescription in 2008, though the report notes some drugs could have been prescribed to treat other conditions. The drugs can have serious side effects for infants, and the GAO points out that there is no established use for these drugs to treat mental-health conditions in infants.

Long-term harm

Even if kids improve with medication, powerful psychotropics may do a lifetime of harm.

Common side effects include paranoia, weight gain, extreme fatigue and reduced bone density.

Little research has been done on long-term impacts on brain development in children. And unlike in adults, side effects like weight gain can become permanent for children, even after they’re taken off the medication.

Proper diagnosis is often a challenge. Post-traumatic stress disorder can look a lot like ADHD, and the treatments for each are different, said Laurel Rettle, critical-care coordination administrator for Cenpatico, one of four Regional Behavioral Health Authorities in Arizona.

Although medications can help those who suffer from PTSD in the short term, long-term use of stimulants — like ADHD treatments — will not.

PTSD “is not, in and of itself, a serious mental illness,” she said. “These children are dealing with things they never should have to deal with. You can compare it to children of war.”

Geara Patten has been a therapeutic foster mom since 1998. Most of her foster children came to her already on medications, she said, and many stayed on them until they aged out of the system. She believes psychotropic medications were used generally only when necessary and helped many of her foster kids get through a difficult time.

Still, most of her foster kids ended up stopping their meds as soon as they gained independence, she said, and they seemed to thrive without the drugs.

“They’re at a calmer place,” she said. “I imagine 90 to 95 percent of them take themselves off the medicine.”

“Assent” sought

Bouncing between foster homes, group homes and behavioral-health facilities for foster youth, Luna learned to accept that the drugs were a necessary part of her life.

“You take the meds and shut up and deal with it, or you get in trouble,” she recalled of her time in a group home. “No one’s there to tell you that we all struggle. It makes you hopeless.”

A foster-care mentor was the first person to suggest her emotions and anger were understandable, and that she wasn’t destined to always need medication. Drake, of In My Shoes, encouraged Luna to question her medication protocol.

“Christa saved my life,” she said. “Christa told me, ‘You have a right to know about your medicine.’”

Starting this month, CPSA is formalizing an “assent” process for foster children under 18 to sign off on their treatment plan, said Stein of Community Partnership of Southern Arizona.

“Assent” is not legally binding, as the child’s caregiver has the final say on treatment, but the process will ensure children understand their diagnosis, treatment options and the goals of their medications, she said.

“It’s absolutely essential to engage kids in their overall health-care treatments,” she said.

Luna got off her medications at age 21 and earned her GED. She put herself through cosmetology school and as a hairstylist, client after client praised strengths she never realized she possessed: her compassion and listening skills.

Now in her work as a mentor to foster youth, Luna says she sees children on four or five different psychotropic medications at a time. Some may have serious mental illnesses and require medication, but she thinks many of them just need understanding.

Giving foster kids the emotional tools to cope with their trauma will have a far more positive effect on their lives, she said.

“You have to cherish all your broken pieces,” she says, “because it makes a beautiful mural.”