By Edward Opton
Foster children are medicated with antipsychotic and other psychotropic medications far more often than other children in the United States. The long-term effects on the developing brains of children and adolescents are unknown. The side effects include significant health risks that in some cases are life-threatening, but the rationale for medicating tens of thousands of foster children is unclear, as few foster children are psychotic. Certainly the drugs’ sedative effects may make life easier for foster parents and group home attendants. An adolescent who is passive or even lethargic demands less attention than an active, obstreperous, and rebellious one.
This may help to explain why more than 55 percent of youth in California group homes are medicated with psychotropic drugs. Concern that antipsychotic drugs in the foster care context often benefit caretakers at the expense of their foster children has led to many calls for better regulation. “Better regulation” generally means “less use” in the minds of those who have expressed concern.
The Ordeal of Henry A.
Henry A. is one of the named plaintiffs in NCYL’s class action lawsuit on behalf of foster children in Clark County (Las Vegas), Nevada. Now 13 years old, Henry A. was only 10 when a combination of psychotropic drugs nearly killed him. The United States Court of Appeals for the Ninth Circuit summarized the allegations in its May 4, 2012, decision reinstating the lawsuit:
Henry A. was forced to change treatment providers more than ten times, but his medical records were not transferred properly. As a result, Henry was given a dangerous combination of psychotropic medications and was hospitalized in an intensive care unit for two weeks, on the brink of organ failure. Upon release from the hospital, Henry was administered the same medications again and returned to the ICU. (Henry A. v. Willden, __ F.4th ___ (2012 U.S. App. LEXIS 9150, May 4, 2012).)
Henry A.’s experience is unusual only in that he nearly died. No one knows the frequency of less severe injuries. It is known, though, that the circumstances that endangered Henry A. are common. In theory, child welfare agencies are responsible for foster children’s medical care, but in practice medical decisions are delegated to foster parents, group home administrators, physicians, and others, especially teachers, who may call for something to be done about problematic behavior. When decisions are everyone’s responsibility they can become no one’s responsibility. No one intended to give Henry A. a nearly lethal cocktail of multiple psychotropic drugs. Multiple people, possibly not communicating with one another, may have made individual decisions whose combined effects sent him to the hospital.
GAO Report Reveals Many Concerns About Prescription of Psychotropic Drugs for Foster Children
In December 2011, the General Accountability Office (GAO) issued a report entitled “Foster Children: HHS Guidance Could Help States Improve Oversight of Psychotropic Medications.” The report responded to a Congressional request that the GAO compare rates of psychotropic drug prescriptions for foster children as contrasted with other children covered by Medicaid, and examine state and federal oversight policies for the prescription of psychotropic drugs for foster children. The GAO found that every day tens of thousands of foster children, and occasionally even infants are administered psychotropic drugs, and foster children are prescribed psychotropic medications, especially multiple medications, at much higher rates than other Medicaid-covered children. There is little to no scientific evidence to support the use of multiple psychotropic medications for children. In fact, the concurrent use of such drugs increases the likelihood of adverse effects, both short- and long-term.
Foster children are frequently shuttled from one placement to another. These changes contribute to a lack of continuity of health care. As in Henry A.’s case, pills may follow a child from one foster home to the next, but medical records may or may not be shuttled from doctor to doctor. A comprehensive assessment of the child may be delayed or never completed. Foster parents, who are responsible for administering medications, are often given little or no information about them. Training for foster parents may range from little to none. Psychotropic drugs for children are usually prescribed “off-label” (for uses other than those for which it is FDA approved) and foster children are prescribed doses in excess of state utilization parameters more often than are other children on Medicaid. Gaps in drug administration are more common for foster children. Sudden withdrawal, with no tapering off, exposes children to significant risks.
Because the U.S. Department of Health and Human Services (HHS) “has provided limited guidance to the states on how to improve their control measures to monitor psychotropic drug prescriptions to foster children,” the GAO turned to the guidelines of the American Academy of Child and Adolescent Psychiatry (AACAP) as a measure of the adequacy of state policies. The GAO found from its review of a select number of states policies that “each of the state programs falls short of providing comprehensive oversight as defined by the AACAP.” Fortunately, federal agencies began to respond to the GAO report even before its formal release.
Congress, Federal Agencies, and Others Act to Promote Reform
In 2011, Congress enacted the Fostering Innovations and Improvement in Child Welfare Act. In this new law, Congress has directed the states to develop policies for oversight of psychotropic medications for foster children. The federal mandate is a condition attached to states' eligibility for billions of federal dollars that support state child welfare programs and therefore carries a powerful incentive for action. The states will be putting together their protocols during the 2012-2013 fiscal year.
Two months after Congress acted, on November 23, 2011, the federal Agency for Children and Families (ACF), in a joint letter with the Centers for Medicare and Medicaid Services (CMS) and the Substance Abuse and Mental Health Services Administration (SAMHSA), informed the 50 states, the District of Columbia, and U.S. territories of a two-day conference to be held in the summer of 2012. Multiple representatives from each state are invited to assemble in Washington, D.C., presumably to talk about—or even to plan—action to reduce medically inappropriate administration of psychotropic drugs to foster children.
At the time of the November 23 letter, the federal government’s intentions were far from clear. It was even less clear that the government’s intentions would translate into action. Good intentions have been known to provoke resistance from those who are comfortable with the status quo, and there are innumerable opportunities for vaguely conceived plans to be shuffled off to languish on bureaucratic sidetracks. Now, however, in the late spring of 2012, it appears that the federal agencies are making a serious effort. Three national webinars were held in January and February, two more in March and April, and a sixth took place on June 5, 2012.
The two-day conference has been scheduled for August 27-28, 2012, with an invited participant list of at least several hundred from the states plus federal officials and others.
Several additional developments indicate a serious possibility for change. On April 30, 2012, the Policy Lab at the Children’s Hospital of Philadelphia released an important report by the Laboratory’s Director, Dr. David M. Rubin, entitled “Interstate variation in trends of psychotropic medication use among Medicaid-enrolled children in foster care.” The report, assembling data from 47 states and commissioned by the federal government’s Agency for Healthcare Review and Quality, revealed that administration of psychotropic drugs to foster children increased by about one-third between 2002 and 2007, the most recent year for which data was available. “Psychotropic polypharmacy,” defined as use of three or more classes of psychotropic drugs within a year, was already occurring at a rate of 5.2 percent in 2002, and as of 2007 it had not diminished.
In February 2012, the federal Agency for Healthcare Research and Quality (AHRQ) released the first-ever comprehensive analysis of published research trials, summarizing the effects—for good and for ill—of antipsychotic medications.i The analysis is highly condensed, but the enormous literature it surveys necessitated a lengthy report: 299 pages. The report is significant because physicians, scientists, and policymakers can now, for the first time, look up what empirical trials have shown about the positive and negative consequences of antipsychotic drugs. Until publication of this report, anyone wishing to report objectively on psychotropic drugs would have had to expend hundreds of hours pulling together results scattered among a myriad of publications.
Unknown Outcomes for Foster Children Prescribed Psychotropic Medications
The AHRQ report is perhaps most notable for the information that it does not include. That information is missing not because the authors have left it out, but because it does not exist. The necessary studies have not been done. We know that the most frequent “indications” for administration of antipsychotic medications to foster children (and to children generally) are diagnoses such as “oppositional defiant disorder”ii. The FDA has not approved antipsychotic drugs, or any drugs, for treatment of oppositional defiant disorder, but lack of FDA approval has not stopped the burgeoning off-label use of psychotropic drugs by group home personnel, foster parents, and physicians who are frustrated by teenagers—and even younger children—who are, or are considered, “obnoxious,” “disrespectful,” or “defiant.”
Despite the very frequent prescription of antipsychotic medications for foster children considered to have oppositional-defiant disorder, no studies address the most important questions: Do antipsychotic medications improve outcomes for such children? Do antipsychotic medications make it more or less likely that children will stay in school? Are medicated children more likely to graduate? To gain employment? To go to prison? To become homeless? To become alcoholics? To use drugs illegally? To become unmarried mothers within two years of “emancipation” at age 18? To lose their own children to the foster care system because of neglect or abuse?
These are important questions. They have vital implications for the affected children and for society. The current state of knowledge for each of these questions is the same: no one knows. It appears that among the thousands of reports on antipsychotic medications, no one has addressed these outcome issues. Psychotropic medications typically are administered to foster children for years on end, but few if any studies have looked beyond six months, and none have assessed the major life outcomes listed above.
What happens next?
What will happen next is unknown. It may depend in part on participation in the debate by readers of this article. A few states, such as Texas and Oregon, have already taken steps to provide review of unorthodox prescribing practices, a few physicians have been barred from Medicaid reimbursement, and many others, it appears, have become more conservative as to psychotropic medications in these states. It is likely that the federal government will urge state governments to adopt similar measures.
Opposition to change is to be expected. The current situation—essentially, unregulated off-label prescription—benefits many, but it does not benefit the foster children who receive more psychotropic drugs than are medically indicated or the taxpayers who pay for those drugs. The principle of inertia, too, favors an outcome of little or no change. Whatever is happening tends to keep on happening, especially within unwieldy bureaucracies such as Medicaid and child welfare. In 2008, Congressional hearings on psychotropic medications for foster children were held, but no action followed. If change this time is to be accomplished, it will require sustained commitment and participation by concerned health care professionals, parents, youth, CASAs, dependency lawyers, judges, caseworkers, foster parents, and citizens. NCYL’s PsychDrugs Action Campaign is an effort to organize participation by these groups in the shaping of comprehensive reforms for children and youth. We hope you, readers of Youth Law News, will join us in this effort. NCYL is also seeking financial support for this campaign.