Foster Care: HHS Has Taken Steps to Support States' Oversight of Psychotropic Medications, but Additional Assistance Could Further Collaboration
Released: 2017-02-06T00:00:00

Letter

Background

Administration of Child Welfare and Medicaid Programs

Children enter foster care when they have been removed from their parents or guardians for reasons such as abuse or neglect, and placed under the responsibility of a state child welfare agency. The agency generally places the child in the home of a relative, with unrelated foster parents, or in a group home or residential treatment center, depending on the child’s needs. Child welfare caseworkers at the agency are typically responsible for coordinating placement and needed support services for these children, including those for mental health. If a child is determined to be in need of mental health services, the caseworker is generally responsible for arranging such services to be provided by primary care physicians, child psychiatrists, or other mental health providers. State courts, typically juvenile or family courts, are also frequently involved in decisions regarding a child’s removal, placement, and services.

Most children in foster care are eligible for Medicaid, and those enrolled may receive physical and mental health services through a variety of service delivery and provider payment systems, such as fee-for-service and managed care. In the traditional fee-for-service delivery system, the state Medicaid agency manages the program and reimburses physicians directly and on a retrospective basis for each health service delivered. Under a managed care model, states contract with one or more managed care organizations and prospectively pay the organizations a fixed monthly fee per patient to provide or arrange for defined health services, which may include mental health services and prescription medications. These organizations, in turn, pay physicians.

States are primarily responsible for administering their child welfare and foster care programs, consistent with applicable federal laws and regulations, which include some requirements that relate to ensuring the well-being of children served by these programs. For example, title IV-E of the Social Security Act authorizes federal funding to states to help cover the costs of operating their foster care and certain other programs. In addition, title IV-B of the Social Security Act authorizes federal funds to support state child welfare programs and services. Both of these programs establish various requirements that participating states must comply with in order to receive the federal funding. The Fostering Connections to Success and Increasing Adoptions Act of 2008 amended title IV-B to add a requirement that states develop a plan for the ongoing oversight and coordination of health care services for children in foster care, including mental health and oversight of prescription medications. The Child and Family Services Improvement and Innovation Act amended this provision to require that these plans include protocols for the appropriate use and monitoring of psychotropic medications. HHS’s ACF is responsible for monitoring state implementation of title IV-E and IV-B programs. For example, ACF conducts reviews of state child welfare and foster care programs every 5 years to ensure conformity with requirements under these federal programs. ACF also monitors state compliance with title IV-B plan requirements, including the health care oversight and coordination plan, through its review of states’ five-year Child and Family Services Plans and Annual Progress and Services Reports. In addition, ACF’s mission is to promote the economic and social well-being of families, children, individuals, and communities through funding, guidance, training, and technical assistance.

Under the Medicaid program, states are required to provide eligible children under age 21 with coverage for certain health services, which may include mental health services, through the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit. Specifically, federal law requires coverage of periodic screening services, including a comprehensive health and developmental history of both physical and mental health development, a comprehensive physical exam, appropriate immunizations, laboratory tests, and health education. The EPSDT benefit also covers treatment services necessary to correct or ameliorate any identified physical or mental illnesses or conditions. HHS’s CMS oversees state Medicaid programs and provides federal matching funds for eligible services. On an annual basis, states are required to report to CMS information on their Drug Utilization Review programs, including prescribing patterns, cost savings generated by the programs, an assessment of the programs’ impact on quality of care, and program operations, including information on new innovative practices adopted by states. CMS includes these reports on its website.

In addition, state mental health agencies are generally responsible for planning and operating state mental health systems, and play an important role in administering, funding, and providing treatments. These agencies may manage mental health-related federal grants and may work with other state agencies—such as state Medicaid agencies— to identify and treat mental health conditions. They may also contract directly with physicians to deliver treatments or may contract with county or city governments responsible for the delivery of treatments within their local areas. HHS’s SAMHSA engages in activities intended to help improve the behavioral health of children in foster care. Such efforts include grants that support the development of community-based services for children with mental health conditions and information sharing on psychotropic medication practices. Many stakeholders may be involved in ensuring appropriate mental health treatments for children in foster care (see fig. 1).

Psychotropic Medications and Other Mental Health Treatments for Children

Psychotropic medications can have significant benefits for those with mental health conditions by affecting brain activity associated with mental processes and behavior. However, they can also have side effects ranging from mild to serious, depending on the class and type of medication used. According to the American Academy of Child & Adolescent Psychiatry (AACAP), medications for attention deficit hyperactivity disorder (ADHD), such as amphetamines (e.g., Adderall) and methylphenidate (e.g., Ritalin and Concerta), can reduce symptoms such as hyperactivity in children as well as improve their attention and increase their ability to get along with others. These medications have been widely tested in children and are generally considered safe; however, ADHD medications have also been associated with side effects such as sleeplessness, loss of appetite, tics, agitation, hallucinations, liver problems, and suicidal thoughts. In addition, antidepressants, such as fluoxetine (e.g., Prozac) and sertraline (e.g., Zoloft) can be used to treat conditions such as depression and anxiety. However, possible adverse side effects include agitation, sleeplessness or drowsiness, and suicidal thoughts. The use of antipsychotics—one class of psychotropic medication—has been of particular concern. Antipsychotic medications, such as aripiprazole (e.g., Abilify) and risperidone (e.g., Risperdal), were developed to treat conditions such as bipolar disorder or schizophrenia.

However, possible adverse side effects can be serious, including increased levels of cholesterol, rapid weight gain, and the development of diabetes or irreversible movement disorders. Mental health researchers and others have stated the need for further research on the safety, effectiveness, and long-term effects of antipsychotics for children.

Psychosocial services are mental health treatments that generally involve therapy sessions with a mental health professional that are designed to reduce patients’ emotional or behavioral symptoms. Such therapies may be used instead of, or in combination with, psychotropic medications to treat children with mental health conditions. Several large, federally funded studies have demonstrated that treatment with a combination of a psychosocial therapy and a psychotropic medication can be more effective than either treatment alone for certain conditions. Further, psychosocial services shown to be effective in treating mental health conditions may be referred to as evidence-based therapies. While there is no standard definition of what constitutes “evidence-based,” some federal agencies and provider organizations, such as SAMHSA and AACAP, evaluate and compile information on available therapies.

Guidance on Oversight of Psychotropic Medications

In response to concerns about psychotropic prescribing practices for children, especially involving those in foster care, AACAP has developed multiple resources to promote the appropriate and safe use of these medications. For physicians, AACAP issued best practice guidelines in 2009 that establish key activities before and after prescribing psychotropic medications to children (see fig. 2).

Building on these guidelines for physicians, AACAP developed best practice guidelines for states in 2012 and 2015, with support and partial funding from SAMHSA, that establish practices for overseeing the use of psychotropic medications for children in foster care as well as other children in state custody. An overarching principle outlined in AACAP guidelines is that the use of psychotropic medications for these children should be part of a holistic and collaborative mental health treatment approach that recognizes (1) the biological, psychological, and social factors that may impact a child; (2) trauma-informed care principles that acknowledge the prevalence and impact of trauma, and a commitment to minimize its effects and avoid additional traumatization; and (3) child- serving agencies as part of a system of care for the child, and services that should be youth-guided, home and community-based, integrated across systems, data-driven, and outcome-oriented, among other things.

HHS issued an Information Memorandum to states in April 2012 to provide guidance to states on complying with the statutory requirement to develop protocols for the appropriate use and monitoring of psychotropic medications. The memorandum cited our previous work that raised concerns about states’ efforts to oversee the use of psychotropic medications among children in foster care. This memorandum identified policy statements and guidelines from AACAP, the American Academy of Pediatrics, and the state of Texas, among others, and discussed consistent elements among these sets of guidelines. These elements, summarized below, include the need for state policies to contain provisions for: screening, assessment, and treatment planning mechanisms to identify children’s mental health and trauma-treatment needs; informed and shared decision-making and methods for ongoing communication among the physician, child, family, and other key stakeholders; effective medication monitoring; availability of mental health expertise and consultation; and mechanisms for sharing up-to-date information and educational materials related to mental health and trauma-related interventions, including psychotropic medications.

In addition to issuing this memorandum to states, we reported in April 2014 that ACF had worked collaboratively with CMS and SAMHSA to provide technical assistance; facilitate information sharing; and emphasize the need for collaboration among state child welfare, Medicaid, and mental health officials in overseeing psychotropic medications from January 2012 through July 2013. Notably, these agencies cohosted a conference entitled “Because Minds Matter” in August 2012 that focused on collaborative medication monitoring as well as creating data systems to facilitate collaboration, among other things. According to ACF, CMS, and SAMHSA officials, the conference was an opportunity for states to talk and share practices, and representatives from 49 states attended.

Selected States Have Practices to Support the Prescribing Process and Educate Stakeholders on the Appropriate Use of Psychotropic Medications

Selected States Have Practices to Support Appropriate Treatment Decisions and Monitor the Child

Officials we spoke with in the seven selected states told us they developed a variety of practices to better support appropriate mental health diagnoses and treatments for children in foster care in their states. These range from requiring initial mental health screenings to monitoring children after they are prescribed psychotropic medications.

Screenings

State officials in all seven of the selected states told us they require mental health screenings of children entering foster care, which is consistent with the guidelines on screenings identified in HHS guidance (see fig. 3).

For example, Washington officials told us that staff in their child welfare screening program are expected to screen children entering foster care within thirty days using validated tools, such as a trauma-related screen for anxiety and post-traumatic stress disorder, which have been tested and found to draw consistent results for the same child across multiple screeners. In addition, the screeners ask children whether they are taking psychotropic medications or receiving health services, and how their symptoms are progressing. Screeners then provide a report to caseworkers, who can follow up to ensure the child receives the appropriate referrals and services. Washington child welfare officials said they also use screening data to analyze how many children with mental health needs are receiving services. Arizona requires that children entering foster care receive a mental health screening within 72 hours to identify and provide services for any immediate mental health needs and reduce the child’s stress and anxiety. Screenings are also to include provision of mental health services to each child’s new caregiver. These services include guidance on how to respond to the child’s immediate needs as the child transitions to foster care, information on mental health symptoms to watch for and report, assistance in responding to such symptoms, and provision of a contact in the mental health system. The child’s caseworker is to be provided with findings and recommendations for needed mental health services. Illinois officials said their child welfare agency requires all children in foster care to receive a comprehensive health assessment from a licensed social worker and the child’s caseworker within 55 days of entering the foster care system. According to these officials, this assessment should include a discussion of mental health issues and can prompt a referral for a psychiatric evaluation for the child.

Guidelines and Restrictions for Prescribing

State officials in the seven selected states said they have a variety of guidelines and restrictions to support appropriate mental health treatments for children in foster care (see fig. 4).

State and county officials from some of the selected states described physicians’ lack of knowledge of child and adolescent mental health issues as a challenge, and officials in all seven states said they developed practices to promote effective treatment decisions. For example, all seven of the selected states developed guidance on the use of psychotropic medications, such as dosage limits for children of different ages and weights, or medication lists that identify medications considered psychotropic. All seven states also require or recommend restricting who can prescribe psychotropic medications, or require or recommend the physician consult a specialist in some cases. For example, in New Jersey, only a psychiatrist, pediatric neurologist, neurodevelopmental pediatrician, or an advanced practice nurse certified in psychiatry or mental health and collaborating with one of these specialists may prescribe psychotropic medications, except in cases of ADHD. In Maryland, if the prescribing physician is not a child psychiatrist, he or she must consult with or refer the child to a specialist before prescribing a psychotropic medication and within 60 to 90 days after making the initial prescription. In addition, Maryland officials said the state’s Medicaid agency contracts with mental health specialists at the University of Maryland to review all antipsychotic medication prescriptions for children in Medicaid.

Agreement on Prescriptions

State officials in all seven of the selected states said they require or recommend that physicians obtain agreement—sometimes in writing— from an adult who has responsibility for the child in foster care (informed consent) and from the child (assent) on prescriptions for psychotropic medications (see fig. 5). These practices are among the consistent elements across guidelines identified by HHS on informed and shared decision-making.

In Washington, the child welfare agency requires agreement from the parent if the child is under age 13, or from the child if he or she is age 13 or older. If the parent of a young child is unavailable, unable, or unwilling to consent, the child’s caseworker must obtain a court order approving the use of psychotropic medication. In Maryland, caseworkers must collect a consent form signed by the parent or legal guardian as well as the child (if age 16 or older), when able. Similar to Washington, if the parent or guardian is unavailable or unwilling to provide consent, child welfare officials may obtain a court order in cases of medical necessity.

Ongoing Monitoring of the Child

State officials in all seven of the selected states said they have practices related to monitoring children: They track or recommend tracking of high- risk prescriptions, such as those involving antipsychotic medications or multiple medications taken at the same time, or they require or recommend periodic follow-up visits or reauthorization of certain prescriptions (see fig. 6). Monitoring medication use for each child in foster care is one of the consistent elements across guidelines identified in HHS guidance.

In Illinois, child welfare officials said their agency conducts ongoing oversight of prescriptions by examining a list of children taking antipsychotics and children under age 6 referred for uncommon conditions, such as aggression or bipolar disorder; consulting with mental health specialists; and referring cases for intensive case management, as needed. California officials said county courts review psychotropic medications every 6 months, while in Maryland, officials said that, for children taking antipsychotic medications, they require physicians to monitor the child’s height, weight, tremors, liver functioning, and blood sugar and lipid levels to identify side effects. They must then submit results to mental health specialists for review. In addition, Maryland caseworkers are required to review positive and negative effects of medications at their monthly home visits.

Selected States Have Taken Steps to Increase Stakeholders’ Mental Health Knowledge and Access to Related Services, but Concerns about Limited Access to These Services Remain

State officials in all seven of the selected states said they work to educate relevant stakeholders on mental health conditions and treatments. Practices to educate stakeholders are among the consistent elements across guidelines identified by HHS on sharing information on mental health and trauma-related interventions with clinicians, child welfare staff, and consumers. In addition, officials in most of the selected states said their state works to increase access to mental health services for children in foster care (see fig. 7).

State officials from five of the seven selected states said they provide relevant stakeholders with access to informational materials. For example, California maintains an online information bank of evidence- based treatments, and Ohio officials developed guides to help children and their families communicate with physicians and participate more actively in treatment decisions. States may offer other types of informational resources as well. For example, Washington child welfare officials said they staff mental health specialists to a telephone hotline to provide physicians who call with consultations on mental health diagnoses and treatments as well as information about local service providers. In addition, officials said the state’s child welfare agency and managed care provider offer in-person and online trainings on children’s mental health, psychotropic medications and other mental health treatments, and the child welfare system.

State and county officials in four of the seven selected states and five of nine national organizations identified limited access to mental health services as a challenge. These officials described a variety of factors limiting access, including insufficient numbers of professionals specializing in related fields, low Medicaid reimbursement rates, underserved rural areas, and physicians’ limited knowledge of services available in their area. As officials from one state explained, patients need access to a wider variety of evidence-based treatments. Other officials noted there are particular shortages among some specialties, such as child psychiatrists, or needed training in areas such as trauma- informed care. To increase children’s access to mental health services, state and county officials in five of the selected states said they provide remote consultation services. In addition, Ohio state officials said the state offers fellowships for medical students in needed mental health specialties as well as training curricula for students to provide mental health services as part of primary care.

State Officials Said Collaboration, Outreach, and Gradual Rollout of New Practices Were Key to Effective Implementation

Officials in the seven selected states identified factors that helped them implement oversight practices for psychotropic medications, such as collaborating with other agencies, conducting outreach with relevant stakeholders, and gradually implementing new oversight practices. State officials in all seven of the selected states said strong collaboration among child welfare, Medicaid, or other partnering agencies was key to implementing these practices. Specifically, Washington officials said supporting children in foster care requires coordinated solutions across the agencies serving this population. In Ohio, officials said the directors of their child welfare, Medicaid, and mental health agencies have worked in the other agencies and as a result share resources and talent more easily and encourage open communication. In Washington, officials said strong collaboration allows their agencies to complement each other’s roles, develop more holistic practices, and implement oversight programs more effectively. Officials in Ohio and Washington attributed successful collaboration within their state to executive leadership support, the commitment and longevity of state agency leaders, and leaders’ and managers’ breadth of experience in multiple agencies and front-line roles. Washington officials emphasized the importance of developing integrated programs in order to institutionalize collaboration.

State and county officials in three of the seven selected states said conducting outreach helped them educate stakeholders on relevant issues and requirements and gain stakeholders’ buy-in. For example, Maryland officials said conducting extensive outreach to physicians on how to best implement new requirements for medication approval and monitoring helped ensure stakeholder adoption of the program and was essential to its success. These officials said they shared information with physicians about antipsychotic medications, monitoring side effects, and available psychosocial services. In response to physicians’ feedback, Maryland officials said they adapted the program to allow physicians to call in required information over the phone to avoid having to complete forms.

Officials in two of the selected states said the gradual rollout of new practices enabled mid-course corrections or supported higher rates of adoption or compliance with the practice. For example, Ohio officials said they developed their medications oversight program in several stages. One step entailed a pilot program that flagged potentially inappropriate prescriptions and required physicians to consult with mental health specialists. Through this program, officials said they identified a lack of mental health knowledge and access to mental health specialists as two causes of inappropriate prescriptions. They said they redesigned their oversight practices to address these causes, tested the new practices, and are now implementing them statewide.

While Some Selected States Reduced the Use of Psychotropic Medications, They All Focused on Other Measures to Gauge the Results of Their Efforts

Some Selected States Reduced Psychotropic Medication Use, though Mental Health and Foster Care Stakeholders Said Reducing Medications May Not Be Appropriate for Every Child

Our analysis of available data from the seven selected states show that four of these states—California, Illinois, New Jersey, and Washington— reduced the percentage of children in foster care on psychotropic medications from 2011 through 2015. Two other selected states— Arizona and Maryland—had steady rates of medication use. Ohio did not have data for this time period. Because states use different methodologies to collect data, these data cannot be compared across states.

While identifying all the factors that contribute to reduced medication use can be difficult, Washington child welfare and Medicaid officials said their second opinion program, which requires physicians to consult a child psychiatrist when prescribing certain medications, has likely prevented inappropriate prescribing. A 2009 study on this program also found that it helped reduce ADHD medications that were provided in high doses, in combinations, and for children under 6.

Child welfare and Medicaid officials in some selected states and officials from most national professional and research organizations we interviewed said reducing medications may not be appropriate for every child. For example, child welfare and Medicaid officials in one selected state explained that without medication, a child in foster care may not be able to sit through a therapy session or perform in school. In addition, officials in all seven states said a child’s mental health can be affected by many factors, including psychotropic medications, psychosocial services, and other situational and environmental factors. Rather than focusing on reducing medications overall, officials in these states said their goal is to ensure the child receives appropriate treatment, which may involve efforts related to all of the factors mentioned above.

States Use Information on Physician Prescribing Patterns and State Oversight Practices to Gauge Results, though Data Sharing Can Be a Challenge

Child welfare and Medicaid officials in all seven of the selected states told us they use a variety of measures to gauge the results of their efforts related to psychotropic medication use among children in foster care. These measures generally examine physician prescribing patterns, state oversight practices, and child placement, health, education, and juvenile justice outcomes. For additional information on measures collected by each selected state, see appendix II.

Physician prescribing patterns. All seven selected states examine data to better understand certain prescribing patterns, such as the use of antipsychotics, the use of multiple psychotropic medications at the same time, and dosage levels for the medications prescribed. Child welfare and Medicaid officials in all of these states said they have particularly focused on antipsychotic medications, in part due to concerns about inappropriate use of these medications and their potential negative side effects for children. Officials in five states told us their state has experienced reductions in antipsychotic use among children in foster care in recent years. Researchers have also noted that concerns about the use of antipsychotic medications spurred state efforts to oversee and improve prescription behavior, and a June 2016 study examining Medicaid data in 20 states from 2005 through 2010 found that trends in the use of these medications are no longer increasing. However, the study noted that current prescribing patterns for antipsychotics at the “new normal” rates of use remain of great concern to many stakeholders.

Child welfare and Medicaid officials in one state also underscored the significance of examining prescribing patterns after they observed spikes in the use of certain medications. These officials said that after their state started requiring second opinions for ADHD prescriptions, they saw increases in prescriptions of antipsychotics, and after requiring second opinions on antipsychotics, they saw increases in prescriptions for the use of multiple psychotropic medications at the same time. Officials interpreted these patterns as showing that some physicians choose to prescribe certain medications partly to avoid their state’s oversight practices. These officials expressed concern that new requirements may cause increased medication use in other areas, which would need to be monitored.

State oversight practices. While selected states may have similar reported practices for overseeing the use of psychotropic medications, they vary in whether they examine data to determine if their practices are followed. For example, while child welfare and Medicaid officials in all seven states told us their state requires some form of agreement or informed consent for a child’s treatment plan, officials in three of these states told us they review reports on whether such an agreement was obtained. In addition, while officials in six states said their state requires or recommends a caseworker or physician conduct follow-up visits with a child on psychotropic medications, officials in one of these states told us they examine data on the required follow-up, specifically for ADHD medications. Officials in three of these states told us they do examine data on whether a physician monitors the child’s metabolic health, including height, weight, and lipid panels. These measures can be used to monitor whether a child is experiencing any adverse effects as a result of taking medications. Child welfare and Medicaid officials in most selected states said they have particularly focused on ensuring children in foster care receive psychosocial services to help address experiences with trauma. Officials in all seven states said their state has guidelines that require or recommend the use of psychosocial services prior to or concurrently with a psychotropic medication, and officials in all of these states told us they examine data on the number of children in foster care who received such services. Officials in four of these states told us their state has increased the use of psychosocial services. For example, a 2013 study on physicians’ use of Washington’s telephone line for mental health consultations between 2008 and 2011 found a 132 percent increase in outpatient mental health visits for children currently or previously in foster care after a consultation. However, as mentioned earlier, child welfare and Medicaid officials in most of the selected states—as well as multiple studies—have noted continuing challenges with access to psychosocial services.

While we did not assess states’ implementation of specific practices to oversee the use of psychotropic medications, findings from a 2016 California State Auditor report highlight the importance of having measures in place to ensure that state practices are followed. Specifically, the report found multiple cases where children in foster care received prescriptions for psychotropic medications without court authorization or parental consent, which, according to the report, is a violation of state law.

Child placement, health, education, and juvenile justice outcomes. Most of the seven selected states collect data to monitor outcomes for children on psychotropic medications. For example, child welfare and Medicaid officials in four selected states told us they monitor information on whether a child in foster care on psychotropic medications experiences a placement disruption (the child is moved from one placement to another). Multiple studies have shown that placement disruptions are associated with increased mental health needs and poor social-emotional outcomes, and that problem behavior can be an indicator of risk for future placement disruptions. Since children may be prescribed psychotropic medications to help treat problem behaviors, examining data on disruptions can help states better understand whether children with problem behaviors on medications are improving or are still having serious behavioral problems. Some states also examine health, education, and juvenile justice outcome measures for children in foster care on psychotropic medications. Child welfare and Medicaid officials in a few states said such measures can help them determine whether the care and services provided to children in foster care are helping these children lead healthy and productive lives. For example, Illinois child welfare officials told us they examine whether a child under the age of 6 on a psychotropic medication has symptoms of self-harm or is hospitalized. In addition, Maryland child welfare officials told us they examine data on school enrollment and academic performance for children in foster care on psychotropic medications, whereas Washington officials told us they examine data on whether children in foster care with mental health needs, including those on psychotropic medications, have any involvement in the juvenile justice system.

Child welfare and Medicaid officials in most of the seven selected states discussed common challenges in their efforts to collect data needed to oversee the use of medications by children in foster care and to monitor outcomes for these children. In five of the seven states, officials discussed technical issues with obtaining reliable data. They said data on psychotropic medications and other mental health services for children in foster care can involve data systems from state child welfare, Medicaid, and mental health agencies. In addition, they said data needed to gauge whether a child’s life improves with treatment—such as the child’s living situation and their health, education, and juvenile justice outcomes—can involve many other data systems, including those from state education and juvenile justice agencies. Because some of these agencies may not collect information specifically on the foster care population, officials said gathering these data may require data matching across these systems. In some selected states, officials said this information may also involve county-level agencies that can vary in the types of data they collect as well as one or more third-party managed care organizations that report to state Medicaid agencies. These officials said matching such data can be difficult and time-consuming, and state child welfare and Medicaid officials in three selected states discussed limitations with data gathering due to resource and time constraints, given other competing priorities.

State child welfare and Medicaid officials in five selected states also discussed privacy concerns related to data sharing. For example, officials in two of these states said state agencies are reluctant to share sensitive data on individuals due to their concerns about privacy protections under the Health Insurance Portability and Accountability Act of 1996 for health information and the Family Educational Rights and Privacy Act for education information. Similarly, officials in two other states expressed uncertainty over the types of data they were able to share under state and federal laws. Child welfare and Medicaid officials in three of the five counties where we conducted interviews discussed similar privacy concerns with data sharing among county-level agencies. Child welfare and Medicaid officials in two of the five states that expressed privacy concerns also discussed concerns about sharing data with managed care organizations. They said they were in the process of determining how to share information specifically on the foster care population with these organizations as well as what data to collect from them.

State child welfare and Medicaid officials in some selected states that were able to share data said they overcame privacy concerns through negotiating written agreements and educating stakeholders about sharing data consistent with state and federal privacy requirements. For example, Maryland child welfare and Medicaid officials said their agencies each formed an agreement to share data with the same contractor, who matched data on children in foster care with Medicaid data on claims for psychotropic medications and mental health services, and reported the information to state agencies without providing personal data. In addition, Maryland child welfare officials said their agency entered into an agreement with their state education agency to share education information for children in foster care. This agreement granted certain officials access to personal information, and these officials assigned anonymous identifiers to each child to protect their privacy while facilitating data sharing. California child welfare officials told us they recently worked with their state education and juvenile justice agencies to issue a letter that summarizes existing state and federal laws that pertain to the sharing of information and records between local education agencies, county child welfare agencies, and caregivers for children in foster care. In addition, Washington child welfare officials discussed data sharing agreements among multiple state agencies that allowed the state to match and share client-level information across more than 30 state data systems. These officials attributed the success of their agreements to strong state leadership and the development of trust and buy-in among the stakeholders involved.

HHS Assists States in Addressing Medication Use and the Mental Health Needs of Children, Though More Could Be Done to Support Collaboration across State Agencies

HHS Supports States in Overseeing Medication Use and Determining Children’s Mental Health Needs and Treatment Options

Since our 2014 review of psychotropic medications for children in foster care, ACF, CMS, and SAMHSA have continued to provide support to states—generally in the form of funding and technical assistance—to assist with oversight of these medications. Specifically, these efforts aim to support states’ practices for prescribing medications, for diagnosis and treatment options, and for implementing measures to assess the quality of health care delivery to children in foster care.

States’ Practices to Oversee Medication Use

Through funding and information sharing, SAMHSA, CMS, and ACF help state agencies with practices related to prescribing medication and their oversight efforts. For example, SAMHSA partly funded AACAP’s development of voluntary recommendations for states on the use of psychotropic medications for children and adolescents. As discussed earlier, these recommendations emphasize that holistic mental health treatment can include medication, but that medication should be only one part of the overall plan. State officials in most of our selected states said they reviewed AACAP recommendations when developing their own guidelines and oversight practices for children in foster care. For example, child welfare officials in Illinois said they worked with a representative of their state AACAP branch, among others, to develop guidelines on prescribing medications, which, according to these officials, were included in their state law. In addition, Ohio’s medication management and oversight program included clinical resources and prescribing guidelines for physicians based on AACAP’s recommendations.

SAMHSA also supports child welfare agency staff and mental health stakeholders seeking to ensure the appropriate use of psychotropic medications for children in foster care through a contract with the Technical Assistance Network at the University of Maryland’s School of Social Work. SAMHSA funds a medical director position at the network, and that director works with 55 child and adolescent psychiatrists in state and county governments to address issues regarding psychotropic medication, including strategies to help ensure children receive appropriate treatment. Specifically, the director created a community listserv of child and adolescent psychiatrists to disseminate best practices and developed webinars on medication oversight. According to SAMHSA officials, the medical director, with input from the listserv community, is developing guidance on how to take youth off medication, an issue that child welfare officials in one selected state said can be a challenge. As these officials explained, psychiatrists generally are reimbursed more for medication management than psychotherapy, which can create a disincentive for keeping children off medication. Through the network’s Clinical Distance Learning Series, SAMHSA also developed webinars and issue briefs on the oversight of psychotropic medications for children on Medicaid, including one on developing performance measures. According to SAMHSA officials, the technical assistance network has also begun planning for a multi-year collaborative for residential treatment centers that have an interest in addressing the use of antipsychotic medications among the youth they serve. As they explained, the goal of this group is to increase best practices related to the use of antipsychotic medications for youth in residential care and reduce outlier practices, such as prescribing children too many medications or at dosages exceeding maximum levels based on labels approved by the Food and Drug Administration. Through funding, SAMHSA has continued to support a multi-year virtual learning community in which community participants receive technical assistance, including monthly e-newsletters, webinar invitations, and access tools and resources. SAMHSA-funded webinars have included issues such as cross-system data sharing, education and engagement of key stakeholders, phone psychiatric consultation models, and red flag and response systems for medication oversight.

CMS, in its 2015 Quality Conference, hosted a Medicaid Track that included a session for Medicaid and health care professionals on physician prescribing patterns considered high risk because of the adverse side effects, including the use of antipsychotic medications. The National Committee for Quality Assurance, a nationally recognized quality improvement entity, presented the results of its efforts to develop measures to oversee medication use at the conference. According to CMS officials, this session prompted formation of a group for interested state Medicaid agencies and their partners on the use of antipsychotic medications for children. Eights states are participating in the group as of October 2016. These states are working on various projects to improve appropriate medication use and monitoring for possible side effects. In addition, in February 2016, CMS collaborated with the National Association of Medicaid Directors and the American Drug Utilization Review Society to host a national call for 12 Medicaid drug utilization review program directors to share their strategic efforts on their child antipsychotic monitoring programs with all other states and the District of Columbia.

ACF developed two guides related to psychotropic medication use for children in foster care. The first guide provides tools to help children ask questions about medications as they meet with physicians. The second publication is a companion guide for child welfare staff and foster parents on mental health issues, the impact of trauma, and psychotropic medications. According to ACF officials, both guides have been distributed nationally and are posted on ACF’s Child Welfare Information Gateway website.

Diagnosis and Treatment Options

HHS also helps states address mental health screenings for children— which affects their diagnosis and treatment options—and increase awareness of and access to trauma-informed care services among the child welfare workforce.

Misdiagnosis and inappropriate medication use: ACF and the Centers for Disease Control and Prevention partnered to study the relationship between misdiagnosis and inappropriate medication use. Their study was spurred by prior research that examined a large sample of children in a child welfare population who underwent a comprehensive diagnostic evaluation. The prior study found that over 85 percent of children diagnosed with fetal alcohol spectrum disorder had never been previously diagnosed or had been misdiagnosed. For these children, the most common mental health diagnosis prior to the comprehensive evaluation was ADHD—a diagnosis that often leads to psychotropic medication prescriptions. ACF and the Centers for Disease Control and Prevention are currently completing a pilot study at a local child welfare agency to understand why a diagnosis of fetal alcohol spectrum disorder might be missed and what information agencies and families need in order to maximize outcomes for children and families. According to ACF officials, they also plan to gather information from other sites to understand this issue at a national level, and to develop training materials for caseworkers and caregivers on a child’s likely prenatal exposure to alcohol as well as the types of information that caseworkers and caregivers need to help these children.

Trauma-informed care and evidence-based practices: ACF provides a variety of trauma-related grants, including grants focused on screening, assessment, treatment, and bridging the gaps between child welfare and mental health. Through support of another ACF grant, the National Center for Evidence Based Practice in Child Welfare provides training and capacity building for child welfare and mental health staff on trauma- focused therapy and on improving access to mental health services. In Washington, the state used ACF’s informational briefs on trauma for its own training and ACF grant funds to develop a handbook on trauma for foster care families.

SAMHSA also provided competitive grants to a cohort of states to help increase quality of care and access to trauma-related services. In 2014, SAMHSA initiated an online and television campaign to inform the public about efforts to treat child trauma and resources available through the National Child Traumatic Stress Initiative. SAMHSA has also formed a relatively new partnership with the National Center for Trauma-informed Care to develop coordinated networks focused on treatments shown to be effective in treating mental health conditions. In addition, SAMHSA has provided funding for webinars and a national technical assistance program that supports research and training centers focused on trauma.

Health Care Quality Reporting Measures

CMS added a measure on the use of multiple antipsychotic medications to the 2016 Core Set of Children’s Health Care Quality Measures for Medicaid and the State Children’s Health Insurance Program. The core set is a voluntary set of measures that states may use to monitor and improve the quality of health care delivery to children covered under Medicaid, including those in foster care. In addition to the measure added by CMS, other measures related to children’s use of antipsychotic medications include behavioral or mental health counseling services and metabolic monitoring. Through its group on antipsychotic medication use in children, CMS facilitates information sharing and provides technical assistance to help eight state Medicaid agencies improve their evaluations of state programs through the voluntary use of these measures. This will be the first year that states may voluntarily report on the measure for the use of multiple antipsychotic medications at the same time among children and adolescents. According to CMS officials, they provided a technical assistance webinar in August 2016 to help states determine how to measure this information. CMS officials said that a key CMS goal is to encourage and support national reporting by state Medicaid agencies on a uniform set of measures to facilitate assessment of quality of care.

Officials from most of the seven selected states we reviewed said they use or plan to use some or all of these measures. For example, in February 2017 California’s Medicaid agency will report to CMS measures on ADHD medication use and the use of multiple antipsychotic medications at the same time, among other things. The measures will include data on all children covered under their fee-for-service, managed care, and specialty mental health programs. In Ohio, state officials said they will build into managed care contracts two Healthcare Effectiveness Data and Information Set (HEDIS) measures as an oversight mechanism: the use of multiple antipsychotics at the same time in children and the first line psychosocial care for children and adolescents on antipsychotics.

HHS Has Supported Some State Collaboration on Medication Oversight, and Selected States Said More Federal Assistance Would Help

Although HHS has a variety of efforts to assist states in overseeing psychotropic medication use among children, since 2014 the agency has not convened meetings with all the relevant stakeholder groups needed to share information and work together on these issues. Under title IV-B of the Social Security Act, states are required to develop their plans for oversight and coordination of health care services for children in foster care in collaboration with the state Medicaid agency, and in consultation with pediatricians, experts in health care, and experts in and recipients of child welfare services. HHS’s guidance on implementing this provision and overseeing psychotropic medication use notes that state oversight should include coordination among and mechanisms to actively engage with child welfare, Medicaid, and mental health stakeholders to improve outcomes for this population. This guidance also discussed HHS’s goal of facilitating cross-system collaborations for the purposes of promoting improved behavioral health diagnosis, treatment, service delivery, and service tracking for children in foster care, which includes actions to increase oversight and monitoring of psychotropic medications. However, HHS’s assistance to states around collaboration has generally focused on a limited number of states or certain stakeholder groups. For example, SAMHSA hosted a day-long technical assistance meeting in 2015 for states with the capacity and commitment to implement improved cross- agency oversight of medication use, however, the meeting was limited to five states. In addition, at its August 2016 National Conference on Child Abuse and Neglect, HHS held a breakout session which focused on a range of issues, including evaluation and oversight of medication, and how effective psychotropic medication oversight systems work in concert with efforts to ensure access to effective psychosocial services. While the conference included this session, ACF officials said it was limited in scope compared to previous events it hosted on this issue.

ACF also finalized regulations in June 2016 that established requirements for a new, optional comprehensive child welfare information system that states can use to maintain their child welfare data. If a state chooses to develop one, the new information system is required to support data exchanges with specified other systems, including Medicaid, court, and education systems, among other requirements. In the final rule, ACF stated that the new information system will provide child welfare agencies with the tools and flexibility to rapidly share data among multiple programs, including Medicaid and mental health. As discussed earlier, officials from child welfare and Medicaid agencies in most of the selected states spoke of challenges related to concerns about state and federal laws protecting individuals’ privacy. In 2013, we reported that state and local human services agencies, among others surveyed, identified challenges related to the interpretation of federal privacy requirements as they balance the need to protect clients’ personal information while increasing the use of data sharing. These challenges included confusion or misperceptions about what agencies are allowed to share as well as a tendency to be risk averse and overly cautious in their interpretation of federal privacy requirements. ACF officials told us some states interpret federal laws on protecting confidentiality to have barriers when there often are not barriers at the federal level. They added that they have used their confidentiality toolkit to debunk myths and concerns with data sharing, though child welfare officials we interviewed in a few of the selected states said they were not aware of a federal toolkit on data sharing.

State officials in all seven selected states spoke of the importance of collaboration, and some said successful cross-agency collaboration has helped them oversee the use of psychotropic medications more effectively. Further, officials in most of these states said they benefitted from HHS’s national convening in August 2012 of state directors of child welfare, Medicaid, and mental health agencies to address the use of psychotropic medications for children in foster care and their mental health needs. The meeting (“Because Minds Matter”), hosted by ACF, CMS, and SAMHSA, provided an opportunity for state leaders to enhance their collaboration on the appropriate use of psychotropic medications. Officials we spoke with said it helped them develop prescribing guidelines and expand reporting on psychotropic medications. According to officials in one selected state, their child welfare agency worked with its mental health agency partner at the HHS meeting to develop its informed consent process. Likewise, the meeting was the impetus for another selected state’s child welfare and Medicaid agency partnership and its quality improvement project, according to state officials. This project involved engaging with multiple stakeholders throughout the state, forming work groups to study psychotropic medication use, and developing training materials and guidance on the proper use of these medications. In a third selected state, three lead agency directors and medical directors formed a team to provide clinical oversight of their foster care population. In addition, officials in one selected state said their participation in the meeting, and in other collaborative efforts, helped them learn about the work of other states in effective monitoring of mental health care for children in foster care, including an improved ability to monitor medication use.

State officials in three of the seven selected states said more federal government leadership could help them work through ongoing challenges, including (1) obtaining best practices in medication use concurrent with other treatments; (2) overcoming siloes across child welfare, Medicaid, and mental health systems serving the foster care population; and (3) enhancing access to child and adolescent psychiatric resources. In addition, officials in selected states transitioning their foster care populations into managed care expressed concern about the transition, and the need to manage the transition to ensure optimal care coordination. Some of the concerns identified include (1) ensuring state agencies share data with the managed care providers to facilitate continuity of care, (2) bringing all the necessary stakeholders onboard during the transition to ensure a common understanding of concepts and roles, and (3) ensuring managed care plans have the needed tools to accommodate non-traditionally served populations that have high medical needs.

State child welfare, Medicaid, and mental health officials in three selected states said having other events similar to the one hosted by HHS in 2012 could provide further support in addressing these challenges. While ACF, CMS, and SAMHSA have held various events with limited numbers of states or certain stakeholder groups, as mentioned above, they have not convened a 50-state meeting that includes child welfare, Medicaid, and mental health stakeholders since 2012 to continue discussions about how best to oversee psychotropic medications. ACF officials said they have no plans to hold a national convening of state agency stakeholders. They explained that, in response to recent mandates on efficient government, they have moved toward hosting more virtual meetings. While virtual meetings can be a useful and cost-effective tool in facilitating collaboration and information sharing, none of HHS’s virtual meetings on psychotropic medications have included most states and stakeholders across multiple services. HHS noted in its 2012 guidance to states on oversight of psychotropic medications that children in foster care are typically involved in multiple service delivery systems, and a coordinated, multi-system approach is necessary to meaningfully improve outcomes for this population. Additional efforts from HHS to include relevant stakeholders in collaborations to address continuing challenges can better position states in their work to improve practices to oversee medication use and effectively ensure appropriate treatments for the foster care population.

Conclusions

Though the benefits of using psychotropic medications have been documented, the health risks or side effects associated with certain prescribing patterns—such as the use of multiple psychotropic medications at the same time and the use of antipsychotics—make it important to ensure that a given treatment is appropriate for addressing a child’s condition. State agencies in our seven selected states have taken steps to curb inappropriate prescriptions of psychotropic medications among children in foster care, often by collaborating with each other and with other stakeholders involved in the child’s care. Officials in these states credited HHS with helping them jumpstart or further their efforts by fostering collaboration and providing forums to share information at HHS’s 2012 conference.

While the states included in our review have made efforts to improve medication oversight, selected state officials and their partners discussed a need for continued collaboration and information sharing to help effectively implement oversight practices, improve access to mental health services, share data, and monitor outcomes. Information on oversight practices can be especially important for states that may not be as far along in their efforts to oversee medication use as those selected for this review, or for those experiencing a period of change as they transition their foster care populations into managed care. While HHS has made efforts to help support states in their oversight activities, additional support from HHS to convene state child welfare and Medicaid agencies and other stakeholders could create opportunities for state agencies to learn from one another’s experience, collaboratively develop solutions to mitigate common challenges, strengthen oversight practices for psychotropic medications, and more effectively ensure appropriate treatments for children in foster care.

Recommendation for Executive Action

To help states effectively address ongoing challenges related to ensuring the appropriate use of psychotropic medications for children in foster care, the Secretary of HHS should consider cost-effective ways to convene state child welfare, Medicaid, and other stakeholders to promote collaboration and information sharing within and across states on psychotropic medication oversight.

Agency Comments and Our Evaluation

We provided a draft of this report to the Secretary of HHS for review and comment. HHS agreed with our recommendation and provided some examples of a virtual convening of select groups of professionals and agencies it employed to facilitate information sharing and collaboration around different issues. We believe that convening child welfare, Medicaid, and mental health stakeholders across all 50 states, in virtual or other settings, is an important step towards helping these stakeholders ensure the appropriate use of psychotropic medications for children in foster care. HHS also provided additional information on their efforts to date to help states address medical and mental health care for children in foster care. Finally, HHS provided technical comments, which we incorporated as appropriate. A letter conveying HHS’s formal comments is reproduced in appendix III.

As agreed with your offices, unless you publicly announce the contents of this report earlier, we plan no further distribution until 30 days from the report date. At that time, we will send copies to the Secretary of HHS and interested congressional committees. The report will also be available at no charge on the GAO website at www.gao.gov.

If you or your staffs have any questions about this report, please contact me at (202) 512-7215 or Brownke@gao.gov. Contact points for our Offices of Congressional Relations and Public Affairs may be found on the last page of this report. GAO staff who made key contributions to this report are listed in appendix IV.

Appendix I: Objectives, Scope, and Methodology

This appendix discusses in detail our methodology for addressing three research questions: (1) how child welfare and Medicaid agencies in selected states work to ensure the appropriate use of psychotropic medications for children in foster care; (2) what is known about the results of their efforts, and (3) the extent to which the Department of Health and Human Services (HHS) helps states support the appropriate use of psychotropic medications for children in foster care. To address these questions, we reviewed relevant federal laws, regulations, and guidance. We interviewed HHS officials, and state officials in seven selected states and county officials in two of those states as well as officials in nine national professional and research organizations. We reviewed national, state, and county guidance and other documents identified by our interview subjects, and analyzed available data from selected states on medication use in foster care over a 5-year period.

To address all objectives, we conducted in-person and telephone interviews with officials in seven selected states, including officials from child welfare and Medicaid agencies and other partners, and with nine national child welfare, Medicaid, and mental health professional and research organizations. The states we selected were Arizona, California, Illinois, Maryland, New Jersey, Ohio, and Washington. Our selection criteria included: (1) a high percentage of children in foster care and congregate care in the state when compared nationwide in fiscal year 2014; (2) variation in the type of Medicaid delivery system covering psychotropic medications and other mental health services for children in foster care (i.e., fee-for-service versus single or multiple managed care organizations) and in the type of child welfare system (i.e., state- versus county-administered); (3) recommendations from national organizations we interviewed for states that have or are in the process of implementing practices to oversee and monitor psychotropic medications; and (4) diversity in geographic location. In two states with county-administered child welfare systems, California and Ohio, we selected five counties and conducted interviews with officials from the respective county-level child welfare and Medicaid agencies, as appropriate. These counties were selected based on factors similar to those mentioned above as well as variation in population density (i.e., rural versus urban). Our findings cannot be generalized to states or counties outside our selection sample.

In the report we use qualifiers, such as “a few,” “some,” and “most” to quantify responses from officials across our interviews with state and county child welfare and Medicaid agencies and their partners, such as universities and state or county mental health agencies. We reported the total number of the seven selected states in which at least one official or partner gave the reported response. These qualifiers are defined as follows: “All” states represents seven “Most” states represents five to six “Some” states represents three to four “A few” states represents two We interviewed representatives from nine national professional and research organizations selected to represent a variety of views on child welfare, Medicaid, and mental health-related policy and research. These organizations were: American Academy of Child & Adolescent Psychiatry, American Academy of Pediatrics, Center for Health Care Strategies, Child Welfare League of America, Medicaid and CHIP Payment and Access Commission, National Association of Medicaid Directors, National Association of Public Child Welfare Administrators, National Association of State Mental Health Program Directors, and National Alliance on Mental Illness.

For all our interviews, we used a semi-structured interview protocol that included open-ended questions about state child welfare and Medicaid delivery systems; state and county oversight practices, including related challenges and measurement of outcomes; and federal efforts to assist states. Information was volunteered by officials in each interview in response to these open-ended questions. Thus, the counts of organizations citing such responses vary. We reviewed relevant documents to corroborate information obtained in our interviews, when possible.

To examine how state child welfare and Medicaid agencies work to ensure the appropriate use of psychotropic medications, we also reviewed guidance and other documents identified by officials from selected states and counties. While we identified selected states’ oversight and monitoring practices related to psychotropic medications based on interviews and these document reviews, we did not assess the effectiveness of states’ implementation of these practices, nor did we evaluate their compliance with state or federal requirements or whether there are controls in place to help ensure that required practices are followed. In addition, while we focused our review on children in foster care, state oversight practices may also pertain to other children on Medicaid. We also reviewed guidance on oversight and monitoring of psychotropic medications for children issued by national health care professional organizations. In addition, we reached out to selected states’ audit agencies and HHS’s Office of Inspector General to identify past, ongoing, or planned work in this area. We also conducted a review of selected literature, including reports from academic, professional, and governmental organizations, related to the use of psychotropic medications and published since GAO’s report in April 2014.

To examine the results of state efforts to ensure the appropriate use of psychotropic medications, we gathered and analyzed available data from selected states on the use of these medications among children in foster care from 2011 through 2015. We selected this range in order to gather data on 5-year trends that included the most recent data available. To examine the reliability of these data, we interviewed and sent a questionnaire to relevant state child welfare and Medicaid officials and examined the data received to identify any obvious outliers. We determined that these data were sufficiently reliable for the purposes of describing trends in the percentage of children in foster care on psychotropic medications for each of the selected states. However, because these states use different methodologies to collect data (e.g., states collected data for different time periods and ages of children in foster care), the data are not comparable among them. In addition, the results of our analyses are not generalizable nationwide. Information collected from selected states, such as on their oversight practices and measures collected to examine the results of their efforts, was provided to officials in each selected state for their review and verification.

To examine HHS’s actions to support state efforts related to psychotropic medications, we interviewed officials from the Administration for Children and Families, Centers for Medicare & Medicaid Services, and Substance Abuse and Mental Health Services Administration, and reviewed relevant documents. In addition, we reviewed guidance on oversight and monitoring of psychotropic medications for children issued by HHS and used it as criteria for our recommendation.

Appendix II: Selected State Information

Appendix III: Agency Comments from the Department of Health and Human Services

Appendix IV: Staff Acknowledgments

GAO Contact

Staff Acknowledgments

In addition to the contact named above, Elizabeth Morrison (Assistant Director), Claudine Pauselli (Analyst-in-Charge), Linda Collins, and Nhi Nguyen made key contributions to this report. Also contributing to this report were Seto Bagdoyan, James Bennett, David Chrisinger, Sarah Cornetto, Celina Davidson, Sara Edmondson, Sandra George, Katherine Iritani, Angie Jacobs, Kirsten Lauber, Hannah Locke, Sheila McCoy, Jonathan McMurray, and Jennifer Whitworth.

Related GAO Products

Foster Children: HHS Could Provide Additional Guidance to States Regarding Psychotropic Medications. GAO-14-651T. Washington, D.C.: May 29, 2014.

Foster Children: Additional Federal Guidance Could Help States Better Plan for Oversight of Psychotropic Medications Administered by Managed-Care Organizations. GAO-14-362. Washington, D.C.: April 28, 2014.

Children’s Mental Health: Concerns Remain about Appropriate Services for Children in Medicaid and Foster Care. GAO-13-15. Washington, D.C.: December 10, 2012.

Foster Children: HHS Guidance Could Help States Improve Oversight of Psychotropic Prescriptions. GAO-12-201. Washington, D.C.: December 14, 2011.

Foster Children: HHS Guidance Could Help States Improve Oversight of Psychotropic Prescriptions. GAO-12-270T. Washington, D.C.: December 1, 2011.