Diego Conde was 12 when his mother died, devastated and bursting with rage at the rotten way life was treating him.
The only living thing left that mattered to him was his tiny dog, Littlefoot. Then, three months later, Littlefoot died.
Photos: Diego Conde, life after the foster care system in Denver, Colorado
Diego was sent to live with strangers — a string of foster families in Denver and Aurora. He got in fights at school, started drinking alcohol and smoking marijuana, and exploded in anger at his teachers and temporary parents. At 13, he overdosed on borrowed prescriptions because he “couldn’t take it anymore.”
And so the state medicated him heavily, with twice-daily doses of potent mood-altering psychotropic drugs he says he did not want to take.
Diego spent most of his teenage years numbed by a combination of Risperdal and Prozac to tame his rage and drown his grief. Now 18, he has aged out of the foster-care system and is speaking up for the thousands of foster children in Colorado who are medicated with psychotropics because of mental and behavioral problems.
About 4,300 of Colorado’s 16,800 foster children — more than a quarter — were prescribed psychotropics in 2012, according to a University of Colorado analysis released to The Denver Post under open-records laws. Among teens in foster care, 37 percent were prescribed psychotropic drugs.
Antipsychotics are the most powerful of these drugs, with brand names such as Abilify, Zyprexa and Risperdal.
Colorado officials have known since at least 2007 that prescriptions and dosage levels of psychotropic drugs — which also include antidepressants, mood stabilizers, stimulants and anti-anxiety medications — were rising sharply among children on Medicaid, a group that includes foster kids. But Colorado’s response has taken years, even as other states took aggressive steps to reduce usage levels. Colorado hasn’t yet addressed key issues such as ensuring that the child-protection system tracks whether foster children are on the medications or confirming that legal consent is properly obtained from guardians.
Some psychiatrists and other backers of the medications argue that children and families are benefiting from a new generation of antipsychotics, and that today’s children are more likely to have severe mental illness that requires medication.
Critics counter that few studies have examined side effects on children, and that the drugs have been linked to weight gain, diabetes and growth of breasts in boys. Foster parents and therapists say heavily medicated children are detached from reality — as though “walking in a cloud.”
They also contend that the use of the drugs has been fueled by pharmaceutical firms pursuing big profits with the help of willing doctors.
“The less a child has a powerful, invested adult advocate, the higher the probability that people will just use interventions that are meant to marginalize or basically zombie-fy kids,” said Dr. Bruce Perry, a doctor at Houston-based ChildTrauma Academy who is a national leader in pushing for less medication and more therapy to treat the root causes of children’s mental problems. “They are just sedating them and trying to control their behavior. Kids just sort of stumble through whole stages of their lives.”
Colorado child-welfare and Medicaid officials defend their progress in addressing high prescription rates among foster children, saying they were proactive when they created a state panel last year to review the issue. Also, they said, it’s expected that foster kids would need more mental health medication.
“One big reason is the trauma that these kids have had in their lives,” said Dr. Judy Zerzan, chief medical officer of the Colorado Department of Health Care Policy and Financing. “Their lives have not been easy — that’s why they are in the foster-care system.”
Doctors choose psychotropic drugs for those children because their trauma-induced behavioral problems mimic the symptoms of mental illness, she said. Also, foster parents often need a more immediate fix.
Diego said he spent most of his teenage years forcing down anti-psychotics he didn’t want to take, drugs that eliminated his lows and his highs, made him numb. One of his foster fathers had a timer that went off at medication time. The four boys living in basement bunking quarters would traipse upstairs for their doses and glasses of water.
“I didn’t know how to feel. I was on autopilot, going through the motions,” said Diego, who was part of the state panel that reviewed psychotropic use in foster care.
He gained 25 pounds, a common side effect of Risperdal. On medication, exercising made his “blood boil” with aggression instead of reducing stress, he said. He lied to his psychiatrist in hopes of lower doses. “I felt like if I would reveal my true self,” he said, “they were going to up the dosage.”
Limited use of drugs
Foster children, many experts said, often are treated with anti-psychotics meant for patients with bipolar disorder or schizophrenia even though their mental problems stem from abuse and neglect, post-traumatic stress and grief. Most advocate for a limited use of the drugs in conjunction with therapy that focuses on repairing developmental delays in brain function caused by trauma.
About half of the kids on government insurance who are taking antipsychotics in Colorado have not been diagnosed with a psychotic illness, or at least do not have one listed in their Medicaid claims, according to an analysis of the claims by CU school of pharmacy researchers and released to The Post. Without a diagnosis, they are taking the drugs for so-called “off-label” reasons not approved by the Food and Drug Administration.
The FDA approves the use of antipsychotic drugs for adults and teens mostly for diagnoses of autism, bipolar disorder or schizophrenia, but they are legally prescribed for children as young as toddlers for off-label use.
Federal officials have reviewed the use of psychotropic drugs in children in recent years, resulting in a 2003 FDA requirement that antipsychotics include a label warning of diabetes and a 2004 requirement that antidepressants include a label warning of heightened risk of suicidal thoughts in children.
The FDA’s pediatric committee examined the rise in antipsychotic use among children, releasing a 2011 document that called for further research. The agency’s role is to push for drug-safety studies and ensure safe labeling, but not to regulate doctors’ prescribing decisions, spokeswoman Stephanie Yao said.
The CU study found that foster kids took antipsychotics at a rate 12 times greater than other children on government insurance in 2012. Even toddlers and preschoolers in foster care were far more likely to receive the drugs, according to the study. Among Colorado’s 7,200 foster teens, 37 percent were prescribed psychotropic drugs, and nearly half of those were on at least one antipsychotic medication.
Use of antipsychotic medication by Colorado foster kids increased from 6.2 percent in 2011 to 11.5 percent in 2012, the most recent year CU data was available.
The average cost of psychotropic medications per year for a foster child on Medicaid is $2,295, compared with $1,202 for a non-foster child in Colorado on Medicaid, the CU study said. Medicaid spent $9.9 million on psychotropic drugs for Colorado foster children in 2012, of which $5.6 million was spent on antipsychotics.
Colorado’s overall rate of anti-psychotic prescriptions to children on Medicaid was lower than the average of nine states in a 2008-11 Medicaid Medical Directors Learning Network study of the drugs.
Graphic: Antipsychotic drugs prescribed to foster children
But Colorado stood out in two notable areas.
Low-income children in Colorado were more likely than children in any of the eight other states to take antipsychotics at two or more times the maximum recommended dose. Also, Colorado had the highest rate of children prescribed two or more antipsychotics at the same time. Foster children were the most likely to fall into this category.
“Whose needs is this medication addressing? The reality is, for the most part, it helps foster parents, schools, therapists, caseworkers — the adults,” said Steve McCrea, a supervisor with Court Appointed Special Advocates for Children in Portland, Ore.
More than medication, foster youths need long-term relationships with adults who they trust will not send them away for expressing their grief and anger. “If they are traumatized, they need secure relationships with adults,” McCrea said. “They need to know people care about them and aren’t going to abandon them.”
Foster mother Christi Beach, who takes in up to six teenage boys at once in her Arvada group home, has made it her mission to help foster youths wean themselves off medication, and most of them arrive on meds — for depression, for anxiety, for sleeping.
This is what she tells them: “Yes, you are going to be sad. Yes, you are going to be angry. Yes, you might have some sleep issues. But I’m willing to walk the miles with you to see what that looks like, as you stabilize, as you are in a nurturing environment, as you learn to have hope. Let’s go outside and hit the punching bag, or run around the block.”
But other families who have taken in children with extreme anger issues view psychotropic drugs as a matter of survival.
Colleen Tarket adopted four foster children who were siblings, survivors of severe abuse and neglect. The oldest, who was 10 when she was adopted, had violent fits and attempted suicide. She was diagnosed with bipolar disorder and prescribed psychotropic medication but refused to take it consistently. Her behavior became so extreme that her parents sent her to a residential treatment center.
But the girl’s youngest sibling, who was 5 when she was adopted, improved dramatically on psychotropic medication. Her grades and her mood got better, and she no longer spoke in nonsensical phrases. Still, Tarket said, weighing the positive outcomes with the side effects was “incredibly difficult.”
“Is weight gain and high cholesterol a good trade-off for being able to communicate with her peers?” she said. “Will the weight gain then hurt her self-esteem, which is already suffering, and make her more depressed? It’s a constant struggle to figure out what the right answer is, and that answer seems to be a moving target.”
Just the two of them
Diego’s mother moved to the United States from Colombia, settled in Aurora and started her own cleaning business. As a boy, Diego helped her put advertising fliers around town. They were happy, just the two of them.
Then she was struck with gastrointestinal cancer. Diego became her caregiver, cooking their meals, cleaning and caring for her. For months, he held it together on his own — until his middle school guidance counselor pulled him out of class to ask what was going on at home.
Diego’s mother, Isabel Rengifo, went to a hospice and he moved in with a teacher, bringing his Pomeranian with him. His mother died in April 2008 while he was living with the teacher. “I remember stumbling down the hallway and seeing my mom in a casket,” he said.
Her name and a cross are tattooed on his left arm.
“The dog helped me out,” he said. “I would cry every night, and my dog would come be with me.”
When his dog died, Diego cracked. Talking about Littlefoot upsets him still.
Diego’s official diagnosis was chronic depression and anxiety. He recalls occasional meetings with a psychiatrist. As he neared the end of his time in foster care, working two fast-food jobs and taking advanced classes to graduate early from Smoky Hill High School, he says he lied to his psychiatrist about his true emotions in order to get off medication.
At first, he felt like his mind was in heavy fog, like he couldn’t think straight. But he was “free to feel,” Diego remembered. To deal with his sadness, and to rid his body of the chemicals, he worked out twice a day.
Diego, who left foster care last year, is living with a friend while he searches for an apartment that will accept his low-income federal housing voucher. He took a few classes at CU Denver and is employed at a job-training program that helps people find work in the tech industry.
“I had to grow up young,” he said.
A dramatic rise
Graphic: Antipsychotic drug use among Colorado children
As early as 2007, psychotropic drug prescriptions were rising dramatically for Colorado kids on Medicaid, data uncovered by an independent researcher shows.
Among children ages 6-12, the number taking three or more psychotropic medications for at least three months jumped from 68 in 2006 to 108 in 2007, according to data received by Ben Hansen, a mental health researcher and advocate in Michigan, and provided to The Post. The state Medicaid office said in response to a recent open-records request from the newspaper that it could not release the data.
State officials attributed the rapid rise in prescriptions for such drugs to improved antipsychotics coming on the market, adding they were prohibited from restricting them by a state order meant to protect consumers’ access to medications.
Hansen’s data also found that the percentage of teenagers on Medicaid who were taking four or more psychotropics at once for at least 90 days jumped 130 percent from 2006 to 2007.
The data was produced by a research firm that received it from the Colorado Medicaid office, in cooperation with Eli Lilly, maker of the antipsychotic Zyprexa.
The two-year monitoring program, initiated in 2006, found Colorado’s Medicaid program was spending more than $1.4 million every two months on “high-risk” prescribing of antipsychotics to children. Kids were taking higher-than-recommended doses or multiple antipsychotics for long stretches.
After new federal requirements, state officials in 2013 convened a panel to examine the high rates of psychotropic prescriptions for children. The panel included psychiatrists, social workers and child welfare experts.
As recommended by the panel, the Colorado Department of Health Care Policy and Financing, which administers the state’s Medicaid program, began requiring prior authorization for children prescribed psychotropic medications for any dosage above the FDA-approved maximum. The state also requires prior approval before paying for antipsychotics for children under 5.
But other recommendations from the panel are not in place. The group wanted Colorado to monitor whether foster children are taking three or more psychotropics at once, and to identify doctors who are prescribing the medications at higher-than-recommended doses.
State Medicaid officials said they hope within the next six months to have a plan that would lead to regular analysis of insurance claims identifying which patients are taking three or more such medications at a time. The CU pharmacy school has not had the money or staff to do such regular analysis for the state, Medicaid officials said.
The panel also recommended that Colorado require prior approval or monitoring of children receiving psychotropic medications for off-label reasons — such as when children have no diagnosis of bipolar disorder, schizophrenia or other psychosis. State officials said they are working to resolve out-of-date technology issues that make it difficult to tell whether patients have a diagnosis. Also, officials plan to require prior approval for off-label prescriptions “in the very near future.”
“This is a high-priority item, but it is too early in the process to state with certainty when this will be resolved,” said Medicaid department spokesman Marc Williams.
Along with re-evaluating medication policy, Colorado has increased spending in recent years on therapies that focus on children’s trauma, including at places such as Mount Saint Vincent home in northwest Denver.
Addressing the high prevalence of foster children on medications will take major change in doctors’ habits and government health care, which are more complex issues in some ways than an attack on pharmaceutical companies, experts said.
“It’s easy to point fingers at the pharmaceutical industry, but it didn’t take a lot for them to ignite this epidemic,” said Dr. Dave Rubin, a researcher at the Children’s Hospital of Philadelphia. Most states lack sufficient therapy programs as alternatives to medication, and government insurance typically reimburses psychiatry visits at much higher rates than other therapy visits, he said.
“We are probably using medications at rates that far surpass what we instinctively feel comfortable with because there are no other options,” he said. “And to some degree, we need to acknowledge that, in the short term, medication settles a kid down. It works. The problem is, is that the best way to treat that child? It’s sort of a chemical restraint. These are very potent, powerful medications that can have very serious side effects, and we don’t know the effects on a developing brain.”
Jennifer Brown: 303-954-1593, jenbrown@denverpost.com or twitter.com/jbrowndpost
Graphic: Growth of sales of antipsychotic drugs
About the drugs
Psychotropics: A broad class of medications made of chemicals that alter brain function, including mood and behavior; these include antidepressants, anti-anxiety drugs and attention-deficit-disorder drugs.
Antipsychotics: The most powerful drugs in the broader class of psychotropics; have been linked to diabetes and weight gain in children, and growth of breasts in boys.
Atypicals: The latest generation of antipsychotic medications, with brand names such as Abilify, Zyprexa and Risperdal.
About the series
This investigation by The Denver Post into psychotropic drug use by foster children stems from The Post’s “Failed to Death” series on Colorado’s child-welfare system that ran in 2012.
The overprescription of powerful psychotropic medication to foster children is a national epidemic — yet in Colorado, efforts to curb the problem lag some states.
The Post obtained unpublished state data and reports, interviewed foster families and children, reviewed other states’ efforts and examined promising new therapies.
Sunday: Foster kids are prescribed powerful drugs that alter brain function at rates far higher than other children. A growing number of experts say this is not only unnecessary, but harmful.
Monday: Over decades, the pharmaceutical industry pushed aggressively to market psychotropics to children and tap into the lucrative Medicaid system.
Tuesday: New therapies to repair developmental delays in children’s brains caused by abuse and neglect are taking hold. Proponents advocate for more therapy and fewer medications.
Wednesday: Other states have been more aggressive and more effective than Colorado in establishing policies to reduce prescriptions of psychotropics to foster children.
Graphic: Most common drugs taken by Colorado children on Medicaid
