A ground-breaking, year-long investigation by Youth Today has uncovered ample evidence that many youths incarcerated in American juvenile facilities are getting potent anti-psychotic drugs intended for bipolar or schizophrenic patients, even when they have not been diagnosed with either disorder.
The findings are derived from records of state juvenile systems that provided sufficiently detailed information on their use of these anti-psychotics – called “atypicals.” Only 16 states responded to a nationwide survey by Youth Today, meaning that a majority of states either would not or could not demonstrate that they were even monitoring the use of these medications on incarcerated juveniles.
The atypical anti-psychotics were being used to treat a wide variety of diagnoses, including intermittent explosive disorder, oppositional defiant disorder and even the more common attention deficit and hyperactivity disorder.
Critics believe most of these diagnoses are simply a cover for the fact that prisons now use drugs as a substitute for banned physical restraints that once were used on juveniles who aggressively acted out.
“Fifty years ago, we were tying kids up with leather straps, but now that offends people, so instead we drug them,” says Robert Jacobs, a former Florida psychologist and lawyer who now practices psychology in Australia. “We cover it up with some justification that there is some medical reason, which there is not.”
Supporters of prescribing the atypicals believe using the drugs as sedation isn’t necessarily bad.
“It prepares youth so they can respond to treatment,” says LeAdelle Phelps, a former juvenile facility director and adolescent psychologist. “By reducing aggression and by having calming, soothing effects,” the anti-psychotic makes residents “more malleable.”
Others disagree, arguing that the drugs may interfere with attempts at meaningful therapy.
But there have been no studies on widespread use of the atypicals on juvenile offenders. The Government Accountability Office is investigating various state policies for placing foster children on atypicals, which in those cases are paid for by federally matched Medicaid.
But federal Medicaid money, by statute, cannot fund care for anyone incarcerated for a crime – adult or juvenile. That means funds for medications issued to juvenile inmates come from state sources.
For more than a year, Youth Today has been working to find out how much states have been spending on anti-psychotic drugs for incarcerated juveniles, and why.
Atypicals and youth: a primer
Nobody fully knows how anti-psychotic medications do their job, but the consensus is that the drugs can quell psychotic episodes by interacting with neurotransmitters in the brain called Dopamine receptors.
The drug binds with the receptors, which limits the amoung of dopamine that is transmitted. That can quell the hallucinations and voices heard by people suffering from schizophrenia or who have psychotic episodes brought on by bipolar disorder.
But because many of the drugs may also bind with and limit other receptors – such as serotonin and oxytocin – they can numb the overall impulses and actions of most people who take them, whether they have a psychotic disorder or not.
Anti-psychotic drugs have been a part of the psychiatric medical arsenal since the 1950s. The first iteration, haloperidol, often prescribed under the brand name Haldol, has long been used in this country either to treat or sedate institutionalized people. It poses serious downsides pertaining to motor control; Haldol has been known to cause tremors, muscle stiffness and twitching in patients.
The second generation of anti-psychotic drugs – the atypicals – emerged in the late 1990s and early 2000s. The five most frequently used are Abilify (aripiprazole), Geodon (ziprasidone), Seroquel (quetiapine), Risperdal (risperidone) and Zyprexa (olanzapine).
The drugs show significantly lower rates of haloperidol’s motor control side effects. But they have their own set of potential side effects in addition to sedation, including significant weight gain and early onset of diabetes.
Those side effects are magnified for adolescents, says Mark Olfson, professor of clinical psychiatry at Columbia University.
“There is a reasonable body of evidence that adolescents are more sensitive to the metabolic side effects,” Olfson says.
Those risks are augmented further in some juvenile facilities by a lack of time devoted to physical activity.
The Food and Drug Administration approved Abilify for use in adolescent patients with schizophrenia or bipolar mania in 2007. Since then, similar approval has been given for Seroquel, Risperdal and Zyprexa. Geodon has not been approved for treatment of youth.
But doctors need not wait for FDA approval to prescribe a drug off-label, and when it came to poor children, they certainly did not wait for the FDA to approve atypical anti-psychotics. Ken Kramer, a researcher with the Citizens Commission on Human Rights of Florida, obtained detailed annual Medicaid expenditures for the five most prescribed atypicals in 30 states.
In 2003, Medicaid spending on the atypicals for adolescents in those states was about $238.7 million. Kramer found that b
y 2007 – the year Abilify became the first to gain approval for adolescent use – spending had more than doubled to $562.4 million.
The rate at which poor children are placed on the drugs dwarfs the rate for privately insured youth, according to a 2009 study by Rutgers and Columbia universities. The study found that youth covered by Medicaid received four times as many anti-psychotic prescriptions as privately insured youth.
Some clinicians remain opposed to using atypicals with adolescents in almost every situation.
“I’m concerned about using [atypical] medications with any adolescent,” says Ron T. Brown, former dean of the Temple University College of Health Professionals, now provost and senior vice president at Wayne State University.
They should be used “only when the ends justify the means, if behavior was so out of control” that using atypicals would be the only way to make the adolescent “more amenable to other treatments.”
“When used as a first resort,” Brown says, “it’s probably not appropriate.”
The way to think about using atypicals for youths is in terms of risks and benefits, explains Olfson. If an anti-psychotic does not address the patient’s problem, he says, the “benefit derived is vanishingly small or nil. But the risks are going to be the same, roughly, whether you have a psychiatric illness or not.”
Texas psychopharmacologist Dr. Wayne Jones believes the atypicals are the only thing that works for adolescents diagnosed with schizophrenia, and acknowledges that for bipolar disorder, “we still don’t have great options.”
“I have 44 years treating patients,” says Jones. “Bipolar is the hardest thing in psychiatry” to manage.
For any other condition, he says, atypicals should only be used “if all else has failed and you have something where there is aggression and borderline personality” involved.
Too often, he says, less intense options are not considered.
“Lithium tends to be underused,” Jones says. “And stimulants have the most benefits with the least side effects.”
Questions and replies
Youth Today asked each state’s juvenile justice agency how much was spent on the five primary atypicals – Abilify, Geodon, Seroquel, Risperdal and Zyprexa – for the most recent year available. The states were also asked to provide the diagnoses that precipitated the prescriptions.
The effort yielded only slivers of the whole atypical picture.
More than two-thirds of the states – 34 – provided no answers to Youth Today.[See chart for a breakdown of state responses.]
The list of states that did not respond includes some with the largest state-held juvenile populations, including Florida, California, Georgia and Indiana. It also includes some, such as Illinois and Pennsylvania, where efforts at system-wide reform have been funded for years.
Seventeen of those 34 states never issued a formal response to deny the request. Another 16 formally responded, but only to say that they would not provide answers to the two questions. South Dakota said in a reply that it does not operated any locked or secure juvenile facilities.
The reasons for denial varied from state to state. Arkansas denied the request because it did not originate from a citizen of Arkansas. Alaska said it would only consider compiling the information if Youth Today paid it more than $70,000 to cover staff time devoted to researching the questions.
But the general theme of most denials is epitomized in these responses:
Maine: “Freedom of Access law requires the provision of this information if it is already compiled and if it is not exempted from the definition of public record; the law does not require us to research the information.”
Pennsylvania, addressing the question on state expenditures: “The department has never computed the amounts in question.”
Both states’ denials are within exemptions provided in public information laws, which do not require states to generate new documents or create original data.
But such a denial provides its own answer: If documents and data on the subject are not available, it is possible that dozens of states do not monitor the amount of, or reason for, potent psychiatric drugs used in juvenile facilities under their control.
Fourteen states provided some information on expenditures in either 2008 or 2009, and the responses suggest a wide variation. Only two of the 14 (New Jersey and Minnesota) spent less than $100,000 on atypicals, and just three (Texas, Florida and Virginia) reported spending more than $1 million.
Only five states – Connecticut, Louisiana, New York, Texas and West Virginia – were able to provide a comprehensive list of diagnoses attached to those expenditures. (North Dakota could not, but conducted a one-day census to provide a glimpse of that state’s usage.)
A total of 5,299 prescriptions were filled in the five states for which diagnoses were listed. Of those, 70 percent (3,709) were filled for conditions other than bipolar disorder and schizophrenia [See charts for a breakdown of diagnoses].
Prescriptions written to treat general mood disorders accounted for 21 percent of the total. Among other conditions for which atypicals were frequently used: attention deficit hyperactivity disorder (ADHD), intermittent explosive disorder (IED) and post-traumatic stress disorder (PTSD).
A 2009 review of existing research about the use of risperidone to treat ADHD, done by the Cochrane Collaboration, found that no research existed that could demonstrate the atypical’s effectiveness on youth with ADHD who also suffered from intellectual disabilities.
Chemical restraints or a path to therapy?
Aggressive behavior and violent outbursts are the hallmarks of many of the conditions for which atypicals are prescribed off-label to juveniles. A frequent signature of atypicals is the sedated nature of its users, the numbed state achieved in part by a lessening of impulsive activity.
For some, it is hard to cast the sedative effects on the juveniles as just a coincidence.
Are these drugs prescribed to treat the condition, or the potential for outbursts? Are doctors too quick to slap a diagnosis on a juvenile simply to rationalize his placement on a numbing drug?
Asked if he thinks the Texas Youth Commission was using drugs simply to restrain kids, Dallas-based Youth Direct Ministries President Don Smarto says, “I can’t prove it, but yes, I do.”
Adolescent psychologist LeAdelle Phelps is all right with that. She has been involved in the juvenile justice system for decades – first as a girls program director in Utah and more recently as a professor at the State University of New York-Buffalo – and she views the atypicals as an important means to an end: ushering juveniles to a mental place where they are amenable to psychotherapy.
Asked if she thinks the diagnosis used to establish a prescription mattered, Phelps replies bluntly, “Not really. … In the end, what you’re trying to do is get him to be responsive to treatment. By reducing aggression by having calming, soothing effects, it makes [the youths] more malleable.”
Her view is based on the assumption that good therapy will be provided once the juvenile is calmer. “It’s a problem if the facility doesn’t do those therapies and just makes kids zombies and turns them back onto the streets,” Phelps says. “But I don’t know too many facilities that don’t” provide the therapy needed.
Recent headlines suggest that an effective balance of medication and therapy are not the norm in every state. In Illinois, for example, mental health services in juvenile facilities are dangerously underfunded and staffed by poorly trained workers, according to a report issued by independent evaluators this summer.
In one facility, the report states, the caseloads are “unmanageable and a barrier for meaningful treatment to occur.” Another facility had a psychiatrist on staff only 12 hours per week, while 98 percent of the facility’s wards were on some form of psychiatric drug.
“One youth was on an anti-psychotic for anger, according to the nurse,” the report states of a third facility that was described as having “largely nonexistent” mental health services. “The use of anti-psychotics for behavioral control is considered chemical restraint.”
Another child psychologist, Robert Foltz, rejects Phelps’ larger premise that use of the atypicals helps usher in a period of amenability to treatment. He has come to believe that atypicals actually can jeopardize the ability of therapists to reach juveniles.
“My training up through grad school told me that patients had to be effectively medicated before therapy,” says Foltz, who oversaw a residential treatment center in Iowa and is now a professor at The Chicago School of Professional Psychology. “I never really bought it. Once out of school, I learned it can interfere.”
Foltz proffered a theory on atypicals and therapy in the fall 2008 issue of the journal Reclaiming Children and Youth. Atypicals are thought to succeed because they limit the flow of dopamine, Foltz explains, but the drugs also likely have the added effect of reducing two other brain chemicals: oxytocin and vasopressin. Both, he says, play a critical part in “modulation of stress and social relatedness.”
Because the flow of oxytocin and vasopressin is stemmed, he wrote, an atypical “proves to create a significant disadvantage when attempting to establish social bonds or a trust-building experience.”
If a medication is necessary to prevent a juvenile’s outburst from becoming violent or otherwise dangerous, Foltz says, anti-anxiety pills would be more appropriate.
An incoming problem
Texas Youth Commission Executive Director Cherie Townsend learned soon after taking the job in 2008 that more than a quarter of the youths in her facilities were on anti-psychotic medication. Just as surprising was that many of them entered her facilities already having been prescribed the drugs.
Townsend had left TYC in 1996 for Juvenile Court Services in Arizona’s largest metropolis, Maricopa County (Phoenix). She went on to direct the system in Clark County, Nevada (Las Vegas) before Texas Gov. Rick Perry (R) beckoned her back to TYC in 2008 amidst a massive reform of the state’s juvenile system.
Townsend remembers a TYC that had two basic responses to juveniles who had been diagnosed with a mental health disorder. Lower-risk juveniles were placed with community mental health providers in the hope that counseling and other treatment could address the underlying reason for criminality. Youth at higher risk, particularly those adjudicated for violent behavior, were placed in one facility, the Corsicana Residential Treatment Center.
It was significantly simpler than the mental health matrix she returned to in 2008. By then, counties could no longer place misdemeanor offenders with TYC, so the agency by definition handles only juveniles who need to be in a secure placement.
Corsicana remains a primary option for juveniles with serious disorders, Townsend says, but it isn’t nearly large enough to accommodate all of the juveniles with diagnosed disorders. She estimates that 90 percent of the juveniles who walk into TYC facilities (many on a return trip) have a diagnosed mental health disorder – and often, a prescription to go with it.
“I think over 14 years, the number of kids presenting with problems grew to include so many youth, [TYC] had to find ways to serve them throughout the entire system,” Townsend says.
When she assumed the Texas post, one trend rose to the surface very quickly. TYC was relying heavily on atypicals to treat mental health disorders.
Nearly 4,000 prescriptions for atypicals were written in 2008, and Townsend said more than a quarter of the population – which hovered between 1,600 and 1,900 – were being prescribed the atypicals. That means some juveniles had to have been prescribed more than one anti-psychotic medication.
“I was pretty overwhelmed,” Townsend says. “I think everyone who has worked in a detention center, when we see a lot of kids on psychotropic medications and atypicals, it’s a great concern to us.”
Data provided by Texas show that the state was using the atypicals most often for youths with no indication of bipolar or schizophrenia. Only 29 percent of the juveniles taking atypicals were diagnosed with either of those two disorders.
The records for more than a quarter of the 3,924 prescriptions for the atypicals did not indicate any condition. The diagnoses records for those prescriptions were labeled “missing” in TYC’s response to Youth Today.
Of the 1,100 prescriptions for which no diagnosis was recorded, 695 were for Seroquel. In 2008, Seroquel was prescribed by TYC psychiatrists 2,553 times, nearly twice as often as the other four atypicals combined.
Because the drug had been used so widely, and accounted for so many of the 2008 prescriptions without diagnoses, Townsend and others feared it had come to be used as the sleeping pill of choice for agency clinicians.
What Townsend saw in numbers, Smarto had seen anecdotally during trips to TYC facilities. His Youth Direct Ministries uses volunteers to conduct juvenile prison ministry services, and he has trained juvenile probation officers and served as an assistant superintendent of a facility.
He noticed a change in the general atmosphere of Texas facilities in recent years. The halls in the buildings and the surrounding areas inside the barbed wire fences were quiet.
“You used to be able to hear it from the parking lot,” Smarto recalls of earlier years working in facilities in Illinois and then Texas. He is describing the noise of juvenile offenders, an exponential projection of the usual din created by any throng of teenagers: laughing, shouting, occasionally screaming and fighting.
Now, Smarto says, “There are more young people who look like they’re on something. We see kids that are, like, half-asleep. This is at 10 a.m. or 2 p.m. in afternoon. Occasionally, you see a kid drooling,” Smarto says.
A change in the system
Texas issued thousands of prescriptions for atypical anti-psychotics in 2009. But Townsend says that since the 2008 review, the agency has taken steps she believes will drastically reduce its reliance on the drugs over time.
Townsend ended a longstanding policy of automatically continuing any course of medication with which a juvenile entered the facility. Juveniles are now re-evaluated upon entry to determine whether they have been treated appropriately.
TYC also sought outside help in handling psychiatric care. The commission had managed psychiatric care internally, relying on a network of independent psychiatrists. Townsend added psychiatric care to the contract TYC has with the University of Texas Medical Branch, which for years had handled physical health care at TYC facilities.
As soon as the university took over the psychiatric health care, its officials and those from TYC met to determine how many psychiatrists needed to be at each facility, and how much of each physician’s time would be needed there.
Next, a joint committee of TYC and UTMB officials was established to create a protocol for which atypicals would be used primarily. The criteria, according to Townsend, included: demonstrated effectiveness, FDA approval for adolescents, published evidence of success with juveniles and long-term trials on side effects.
Those criteria singled out Risperdal as a primary atypical option and Abilify and Geodon as secondary options. A psychiatrist who is convinced that any other anti-psychotic is necessary would have to demonstrate, for example, that other options had failed, and cite any unacceptable side effects to be allowed to something other than the approval atypicals.
TYC continues to struggle with aspects of its mental health services. The Corsicana facility does not have enough psychologists or psychiatrists to handle the juveniles sent to it, a group of advocates said in a letter to the U.S. Department of Justice. The letter requested a Justice investigation into, among other problems, “inadequate mental health care” at all TYC facilities.
Youths with mental health problems at another Texas lockup, the Al Price Juvenile Correctional Facility, told the advocates that they rarely saw psychologists and had only visited a psychiatrist via teleconference.
It appears that the new protocol is slowly moving the needle when it comes to appropriate use of anti-psychotics. The percentage of TYC juveniles on any atypical is down, from 26 percent to 21 percent. [See chart].
The most apparent change is TYC’s sharp decline in the use of Seroquel. TYC was spending $60,000 a month on Seroquel before the protocol, which became official policy in January 2010. For the month of June, TYC spent $16,000 on the drug.
“It is not appropriate to use anti-psychotics as a sleep aid, or for ADHD,” Townsend says. so she put her focus there.
Officials said that a 2009 review of records found diagnoses listed for each prescription, however, they were not able to provide a copy of the report.
The next phase will be to evaluate use of the drugs for mood disorders other than bipolar, she says, and increase the use of therapeutic options ranging from yoga to aggression replacement therapy that are employed at the facilities.
Texas is not the only state to review and then amend its approach to using atypicals. New Jersey was spending $124,600 on atypicals for incarcerated juveniles in 2005. In 2008, that figure was down to $26,400.
Part of the drop can be ascribed to the reduction in facility population from about 1,200 in 2005 to 500 in 2008. But the state also took a path strikingly similar to Texas.
It contracted in 2005 with the University of Medicine and Dentistry of New Jersey to oversee psychiatric care, and the university staff “reviewed all patients receiving psych meds utilizing evidence-based protocols,” says Sharon Lauchaire, a spokeswoman for the New Jersey Juvenile Justice Commission. “Due to this change in philosophy, many residents were removed from these meds.”
Pills without oversight
It is clear that in at least some states, atypical anti-psychotics have become a major part of the medical protocol in juvenile facilities, and prescriptions for the drugs are tied to a wide range of diagnosed conditions.
In Texas and New Jersey, officials were concerned enough after reviews of atypicals’ use that they initiated a serious change.
In the majority of states, it is possible that officials do not even know if there is something to be concerned about.
“I don’t know that they’re not paying attention,” says Townsend of officials in other states. “When I talk with colleagues, it’s not that they don’t care. States don’t have systems to do some of this.”
A lot of states contract out psychiatric care, which creates a barrier between state and private data collection. But increased use of electronic records should make it easier to share, Townsend says.
“Part of what happens is without data, you can’t know for sure what’s going on,” Townsend says. “In corrections, we’ve kept the medical world separate instead of having an integrated approach. It’s not a separate world for these kids.”
Reporter Ben Penn contributed to this report.