January 13, 2016 Articles

Protecting Foster Youth from Unsafely Administered Psychotropic Drugs

By Sara Bartosz

On any given day, thousands upon thousands of children in foster care across the country are administered psychotropic medications to address mental health and behavioral issues. Some of these children receive combinations of two, three, or more such medications at a time. Some are prescribed these drugs in elevated dosages. Some are even placed on powerful antipsychotics. Many are quite young. The federal government has taken notice of this sobering reality. In December 2011, the Government Accountability Office (GAO) submitted a written report to Congress, Foster Children: HHS Guidance Could Help States Improve Oversight of Psychotropic Prescriptions (GAO-12-201), which noted the significant rates of psychotropic medication utilization in state child welfare systems and the absence of adequate oversight mechanisms to ensure that these drugs are being administered safely and appropriately. Subsequently, the Administration for Children and Families (ACF) issued an April 2012 information memorandum, "Oversight of Psychotropic Medication for Children in Foster Care; Title IV-B Health Care Oversight & Coordination Plan" (Log No. ACYF-CB-IM-12-03), outlining steps that should be taken by the states to monitor the safety of children in foster care placed on a regimen of prescription medications.

Why the concern? First of all, these psychotropic drugs are in the vast majority of circumstances FDA approved following controlled testing on study groups limited to adults. The off-label use of psychotropic medications on children, therefore, frequently comes without adequate empirical data to demonstrate either the particular drug's likely effectiveness or the risks associated with its administration to a child. Given that a child's brain remains in development well into the teen years, a risk of permanent neurological damage may well accompany the ill-advised use of psychotropic medications within the child population. Moreover, children on these drugs often report feeling drowsy, listless, detached, and emotionally flat over the course of their day-to-day lives.

The disruptive realities of foster care serve to exacerbate this risk. For children in foster care, the separation from their parents may mean that vital knowledge about their medical history is lost or fragmented. These children frequently are moved between numerous foster homes and caretakers and further experience multiple changes in their assigned social workers and physicians. These disruptions scatter essential knowledge about the children's health and behavioral history, including how they have reacted to particular medications and dosages in the past. Tragically, the disruptive nature of foster care also spawns a cycle in which the use of psychotropic medications is accelerated. Each placement move or change in social worker creates additional trauma and instability for a child, whose behaviors predictably may deteriorate. In an effort to ameliorate these difficult behaviors and to prevent additional placement disruption, a course of psychotropic medication often follows.

The results are concerning. Studies have shown that children in foster care are administered psychotropic medications at far higher rates than observed in the general child population. For example, the GAO study published in 2011 revealed that while 10.2 percent of Medicaid-eligible children in the Massachusetts general population received psychotropic medications, 39.2 percent of foster children in the state were on such drugs. Similarly, 32.2 percent of foster children in Texas were taking psychotropic medications compared to just 7.1 percent of Medicaid-eligible children in the general population. A similar disparity in utilization rates has been observed in many other jurisdictions.

Though the federal government has placed increased focus on the vital need for structured oversight of psychotropic medication usage in foster care, many state child welfare agencies are behind in implementing such safety mechanisms. In the absence of durable oversight systems—and even after they are ultimately put into place—court-appointed counsel for children can and should play a substantial role in ensuring safety in the administration of drugs to their clients. Below is a checklist of health care fundamentals that counsel should regularly address during the course of a child representation. It should be noted that in monitoring these fundamentals, the purpose is not to eliminate utilization of psychotropic medications altogether, as these drugs can provide very real benefits to children when used properly. Rather it is to ensure that these powerful medications are prescribed for proper purposes and administered safely.

Comprehensive and Updated Child Medical Records
The case plan provisions of Title IV-E of the Social Security Act, section 475(1)(C) and (5)(D), require state child welfare agencies to (1) maintain updated health care information on each child in out-of-home care, including the child's prescription medication history; and (2) provide this information to each and every foster parent upon placement of the child in their home. Remarkably, even in the age of electronic data storage, many child welfare systems continue to struggle in compiling and updating essential medical information in a readily accessible form. Though several states have adopted policies calling for the creation of "medical passports" that are to follow each child from placement to placement, the unfortunate truth is that recordkeeping practice all too often widely departs from policy. Overburdened caseworkers, forced to make difficult decisions about time allocation, routinely prioritize other important social work tasks over the seemingly mundane task of compiling up-to-date medical records. This derelict practice can have serious consequences when physicians are called upon in emergency or other urgent circumstances to deliver treatment, which may include prescribing one or more psychotropic drugs, with less than complete information.

Court-appointed counsel should take steps to ensure at the time of each federally required periodic case plan review, whether judicial or administrative, that the minor client's medical records and information are complete and up to date, including a listing of all psychotropic medications by name, prescribed dosage, and prescribing physician. The challenge of maintaining a complete health history for the typical child in foster care only escalates as the agency's medical file grows stale and disruptions in the child's placements, physician relationships, and caseworker relationships conspire to scatter or altogether lose pertinent information. For many children, their appointed lawyer represents the most lasting relationship they will know during their long foster care stays. Counsel, therefore, should always endeavor to ensure as much as possible the continuity of knowledge regarding the child's medical history—timely and complete documentation is vital and serves as a bedrock for accountability.

Informed Consent
The medical profession requires that a physician or other medical professional obtain informed consent from a parent or legal guardian as part of the process of prescribing any psychotropic medication to a minor child. See Am. Acad. of Child & Adolescent Psychiatry, A Guide for Community Child Serving Agencies on Psychotropic Medications for Children and Adolescents (2012). The informed consent process involves the medical professional—having first secured and assessed the child's pertinent medical history—instructing the parent or guardian on the intended benefits of the recommended drug regimen, as well as all known risks and potential side effects. Additionally, the prescriber should advise the parent or guardian of any nonpharmacological treatments, such as evidence-based therapies, which might be a preferable alternative or a corollary to a course of psychotropic medications. The parent or guardian, for his or her part, should first provide the medical professional with as complete a medical history for the child as possible, including prior or current medications and any observed physical or behavioral reactions to those medications, and ultimately determine whether to consent to the recommended treatment course only after gaining a full understanding of the intended benefits and associated risks. When youth are of a sufficient age to understand and participate in the informed consent process, they additionally should be given the opportunity to assent to any recommended drug regimen after hearing about the likely benefits, risks, and side effects.

Quite naturally, the informed consent process lends itself well to treatment decisions involving children in permanent family homes with birth parents, adoptive parents, or legal guardians who are a consistent and long-term presence in their children's lives. These permanent caretakers, to varying degrees, possess a wealth of knowledge regarding their child's medical and behavioral histories, much of it coming firsthand, and are able to impart this vital information to a medical professional upon request. By contrast, foster care is intended to be a temporary setting, particularly in relation to children with a permanency goal of family reunification; and foster caretakers often do not possess the same depth of firsthand or long-term knowledge. Nor do they always take a longer view on the child's mental health needs as they urgently seek to manage or ameliorate difficult behaviors in the moment.

It is incumbent on child welfare agencies, therefore, to develop policies and practices that ensure a meaningful informed consent process for children receiving medical and mental health treatment while in temporary state care. This includes identifying who is authorized to give informed consent for the child in particular circumstances—for example, prior to the termination of parental rights, should informed consent be given by the birth parent, the foster parent, or the assigned agency social worker? Unfortunately, many state child welfare agencies currently lack a well-defined informed consent policy that is consistently understood and followed by key stakeholders, including social workers, foster parents, biological parents, and physicians. This lack of definition often may act to undermine the informed consent process. Clearly delineated roles in the informed consent process are essential to ensuring that the adult exercising consent authority for the child is armed with the knowledge and understanding to do so meaningfully.

Court-appointed counsel should regularly inquire whether the child client has been placed on any prescription medications and take follow-up steps to ensure that appropriate informed consent was given and fully documented in the case file. Moreover, when the client is of sufficient age to participate in the informed consent and assent process, counsel should further ensure that the youth was in fact included and heard.

Monitoring and Oversight
In 2015, the American Academy of Child and Adolescent Psychiatry (AACAP) published updated guidelines in relation to the safe and appropriate utilization of psychotropic medications in the foster care context. These guidelines, Recommendations about the Use of Psychotropic Medications for Children and Adolescents Involved in Child-Serving Systems, call upon state child welfare agencies to erect monitoring and oversight systems to ensure safety in the administration of these powerful drugs. The AACAP guidelines provide that these "[m]onitoring methods should entail a combination of approaches that include a review of aggregate data on prescribing patterns, chart audits, and tracking of specific red flag markers." The tracking of red flag markers is intended to identify higher risk situations—such as children concomitantly placed on a combination of psychotropic drugs or children prescribed a high dosage of a particular medication—so that a secondary review can be undertaken by a qualified professional to determine efficacy and safety. An earlier iteration of these AACAP recommendations, published in 2005, was utilized by the GAO in conducting its 2011 study of medication patterns in the foster care population and later embraced by the federal ACF in issuing its 2012 information memorandum to the states.

State child welfare systems have made varying degrees of progress in implementing these recommended monitoring and oversight systems. Many states have not to date built the data systems required to track prescription drug utilization on an aggregate basis or have not fully developed the medical records management systems required to facilitate a timely and competent secondary review process. Regardless, court-appointed counsel for children should fully educate themselves on the AACAP guidelines and any monitoring and oversight systems adopted in their home jurisdictions. When a home jurisdiction has not as yet implemented a monitoring and oversight scheme, counsel should nonetheless familiarize themselves with the red flag markers currently in use in a variety of states, including, among others, Texas, California, Tennessee, and Illinois. Whenever a child client is determined to be on a psychotropic medication regimen that falls within a red flag marker category, counsel should advocate for a secondary review to ensure safety and efficacy.

Health Screenings and Follow-Up Therapeutic Treatment
Finally, counsel should take steps to ensure that the child client is receiving the medical and behavioral health screenings called for under the Early and Periodic Screening, Diagnostic and Treatment (EPSDT) provisions of Medicaid for which the vast majority of children in foster care are eligible. These screenings provide an opportunity to detect mental health or behavioral issues early on and to direct the child to nonpharmacological treatments that might serve to eliminate or reduce the need for psychotropic medications. While there is growing evidence that psychotropic medications can be effective in decreasing child hyperarousal, anxiety, and depression, there is also an increasing appreciation among professionals that these drugs cannot address the child's past, traumatic life experiences and provide the child with the coping skills or renewed sense of safety that might be developed in a therapeutic treatment approach. Thus, the federal government, in concert with the medical community, is placing heavy emphasis on building the necessary capacity to deliver evidence-based, trauma-informed therapies to children who might benefit from such treatment. Court-appointed counsel should become familiar with these trauma-informed therapies and advocate for such services where appropriate. Currently recognized evidence-based treatments include trauma-focused cognitive behavioral therapy (TF-CBT), child-parent psychotherapy (CPP), alternatives for families cognitive behavioral therapy (AF-CBT), and parent-child interaction therapy (PCIT).

Every child in foster care has experienced emotional trauma in some form, including for all of them the separation from their parents and their familiar surroundings. These children, therefore, frequently present behaviors and other manifestations of trauma that may require medical and mental health interventions. Court-appointed counsel should consistently and assertively advocate for the child client and take steps to ensure that the appropriate interventions are being undertaken timely and safely.

Keywords: litigation, children's rights, foster youth, mental health, psychotropic medications, medical history, informed consent, oversight, health screenings

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Sara Bartosz – January 13, 2016