Children's Mental Health: Concerns Remain about Appropriate Services for Children in Medicaid and Foster Care
Published: 2012-12-10T00:00:00

Fast Facts:

Highlights:
section_title: Why GAO Did This Study
paragraphs: Experts have concerns that children with mental health conditions do not always receive appropriate treatment, including concerns about appropriate use of psychotropic medications (which affect mood, thought, or behavior) and about access to psychosocial therapies (sessions with a mental health provider). These concerns may be compounded for low-income children in Medicaid and children in foster care (most of whom are covered by Medicaid)--populations who may be at higher risk of mental health conditions. Within HHS, CMS oversees Medicaid, and ACF supports state child welfare agencies that coordinate health care for foster children.
GAO was asked to provide information on children's mental health. This report examines (1) the use of psychotropic medications and other mental health services for children in Medicaid nationwide, and related CMS initiatives; (2) HHS information on the use of psychotropic medications and other mental health services for children in foster care nationwide, and related HHS initiatives; and (3) the amount HHS has invested in research on children's mental health.
GAO analyzed data from HHS's MEPS --a national household survey on use of medical services--from 2007 through 2009 for children covered by Medicaid and private insurance. GAO reviewed two recent ACF foster care reports with data from a national survey conducted during 2008 through 2011. GAO analyzed data from HHS agencies that conduct or fund research and interviewed HHS officials and children's mental health providers, researchers, and advocates.
section_title: What GAO Found
paragraphs: An annual average of 6.2 percent of noninstitutionalized children in Medicaid nationwide and 4.8 percent of privately insured children took one or more psychotropic medications, according to GAO's analysis of 2007-2009 data from the Department of Health and Human Services' (HHS) Medical Expenditure Panel Survey (MEPS). MEPS data also showed that children in Medicaid took antipsychotic medications (a type of psychotropic medication that can help some children but has a risk of serious side effects) at a relatively low rate--1.3 percent of children--but that the rate for children in Medicaid was over twice the rate for privately insured children, which was 0.5 percent. In addition, MEPS data showed that most children whose emotions or behavior, as reported by their parent or guardian, indicated a potential need for a mental health service did not receive any services within the same year. The Centers for Medicare & Medicaid Services (CMS) and many states have initiatives under way to help ensure that children receive appropriate mental health treatments. However, CMS's ability to monitor children's receipt of mental health services is limited because CMS does not collect information from states on whether children in Medicaid have received services for which they were referred. GAO recommended in 2011 that CMS identify options for collecting such data from state Medicaid programs. Findings in this report underscore the continued importance of CMS's monitoring of children's receipt of mental health services.
HHS's Administration for Children and Families (ACF) reported that 18 percent of foster children were taking psychotropic medications at the time they were surveyed, although utilization varied widely by the child's living arrangement. ACF also reported that 30 percent of foster children who may have needed mental health services did not receive them in the previous 12 months. HHS agencies are taking steps to promote appropriate mental health treatments for foster children, such as by sending information to states on psychotropic medication oversight practices.
HHS's National Institutes of Health spent an estimated $1.2 billion on over 1,200 children's mental health research projects during fiscal years 2008 through 2011. Most of the funding--$956 million--was awarded by the National Institute of Mental Health, with more research projects studying psychosocial therapies than psychotropic medications. Other HHS agencies spent about $16 million combined on children's mental health research during this period.
HHS reviewed a draft of this report and provided technical comments, which GAO incorporated as appropriate.

section_title: Letter
paragraphs: Children with mental health conditions are among the country’s most  vulnerable populations, and there are concerns about whether they have  access to the most appropriate kind of care for their conditions. Early  detection and treatment of childhood mental health conditions can  improve a child’s symptoms and reduce potentially detrimental effects on  a child, such as difficulties with relationships, dropping out of school, and  involvement with the juvenile justice system. Children with mental health  conditions, such as attention deficit hyperactivity disorder (ADHD) or  depression, can be treated with psychosocial therapies (sessions with a  provider designed to reduce symptoms and improve functioning);  psychotropic medication (medications that affect mood, thought, or  behavior); or a combination of both. Many of these children, however,  lack access to the treatments they need to help them manage or  overcome their emotional or behavioral problems. In addition, child  mental health advocates, providers, and researchers have expressed  concern about the increase in the prescribing of psychotropic medications  for children, in part because there is limited evidence available regarding  short- and long-term safety and efficacy for some types of medications,  particularly for combinations of medications. Mental health experts are  especially concerned about the recent increase in prescribing of  antipsychotic medications—psychotropic medications developed to treat  conditions such as schizophrenia and bipolar disorder—in part because  these medications can cause very serious side effects, such as rapid  weight gain and the development of diabetes.
Concerns about access to appropriate mental health services and the  increased prescribing of psychotropic medications may be compounded  for children in Medicaid, the State Children’s Health Insurance Program  (CHIP), and foster care—children who may be at higher risk of mental  health conditions than other children. Children in foster care, most of  whom are eligible for Medicaid, are an especially vulnerable population  because often they have been subjected to traumatic experiences  involving abuse or neglect and they may suffer from multiple, serious  mental health conditions. Although state Medicaid programs are  generally required to cover services to screen children for mental health  problems and to provide treatment for any identified conditions, we  previously reported that it can be difficult for physicians to find mental  health specialists to whom they can refer children in Medicaid.for children in Medicaid and CHIP are also related to studies that have  shown that publicly insured children are prescribed psychotropic   Concerns  medications at higher rates than privately insured children. We reported  in 2011 that children in foster care take these medications at higher rates  than other children in Medicaid, and we recommended that HHS consider  issuing guidance to state Medicaid and child welfare agencies on best  practices for monitoring psychotropic medication prescriptions for foster  children.
Several agencies in the Department of Health and Human Services  (HHS) have responsibilities related to children’s mental health. The  Centers for Medicare & Medicaid Services (CMS) oversees, and jointly  finances with the states, the Medicaid and CHIP programs, which provide  health coverage for low-income children. State Medicaid programs are  required by federal law to provide coverage for certain health services,  which may include mental health services, for most children through the  Early and Periodic Screening, Diagnostic, and Treatment (EPSDT)  benefit. The Administration for Children and Families (ACF) provides  funding for and oversees states’ child welfare programs, which are  responsible for monitoring and coordinating mental health services for  foster children, among other things. The Substance Abuse and Mental  Health Services Administration (SAMHSA) works to increase the quality  and availability of mental health treatments, such as by awarding grants  that support the development of community-based services for children  with mental health conditions, including children in foster care. Other HHS  agencies, including the National Institutes of Health (NIH), Food and Drug  Administration (FDA), Agency for Healthcare Research and Quality  (AHRQ), and Centers for Disease Control and Prevention (CDC),  conduct, fund, or review research that seeks to expand the knowledge of  children’s mental health conditions and treatments.
Because of your interest in children’s access to appropriate mental health  treatments, you asked us to provide information on mental health  services, including medications, for children in Medicaid, CHIP, and foster  care nationwide and on the federal investment in children’s mental health  research. This report examines (1) the use of psychotropic medications  and other mental health services by children nationwide in Medicaid and  CHIP, and related CMS initiatives; (2) HHS information on the use of  psychotropic medications and other mental health services by foster  children nationwide, and related HHS initiatives; and (3) the amount HHS  has invested in research to study children’s mental health conditions and  treatments.
To examine the use of psychotropic medications and other mental health  services by children in Medicaid and CHIP, we analyzed nationwide data  from the Medical Expenditure Panel Survey (MEPS) from 2007 through  2009. We included children ages 0 through 20 who were enrolled in  Medicaid or CHIP for at least 10 months in a calendar year, excluding  children in foster care. Because MEPS does not differentiate between  children in Medicaid and children in CHIP, we could not report on these  programs separately. For the purposes of this report, we used the term  Medicaid to refer to both Medicaid and CHIP. We analyzed MEPS data  for privately insured children as a point of comparison. Specifically, we  examined annual rates of psychotropic medication use, numbers and  types of medications taken, and utilization of office-based mental health  services, such as visits to a psychiatrist or psychologist. We also  examined receipt of mental health services by children who had a  potential mental health need. To identify children with a potential mental  health need, MEPS employs a standardized psychometric scale designed  to measure emotional and behavioral impairment. Using this scale, we  identified the percentage of children whose emotions or behavior, as  reported by their parents, indicated a potential need for mental health  services. This measure does not indicate the level of treatment a child  might require; rather, it identifies the percentage of children whose  emotions or behavior indicated a need for, at a minimum, a mental health  evaluation. Estimates using MEPS may be conservative because the  survey excludes children in institutional settings, such as psychiatric  hospitals, who are likely to be high utilizers of psychotropic medications  and mental health services. In addition, MEPS relies on self-reporting by  parents for utilization of medications and services, which may be  understated because parents may be reluctant to report such information due to the stigma that can be associated with mental health conditions.We reviewed the MEPS survey instruments and methodology and  determined that the data were sufficiently reliable for our purposes. (See  app. I for more information about the methodology we used to analyze  MEPS data.) We also reviewed relevant literature on children’s mental  health and interviewed CMS officials and state mental health program  directors to learn about their efforts to monitor prescribing of psychotropic  medications and to increase access to mental health services among  children.
To examine HHS information on the use of psychotropic medications and  other mental health services by foster children nationwide, we reviewed  two reports published by ACF. Both reports presented the results of the  National Survey of Child and Adolescent Well-being II (NSCAW II), a  nationally representative longitudinal survey of children ages 0 through   19 who were in contact with the child welfare system. The NSCAW II  surveys occurred in multiple phases during 2008 through 2011. One  report, published in November 2011, summarized NSCAW II data  collected during phase 1, from March 2008 through September 2009.  The second ACF report was a research brief on the use of psychotropic  medication by children in contact with the child welfare system, which was  published in 2012 and used NSCAW II data collected during phase 2,  from October 2009 through January 2011. The survey collected  information on children who either lived in out-of-home foster care  placements or remained in the care of their parents or relatives. For this  report, we considered children in foster care to be those who lived in out- of-home foster care placements—that is, in nonrelative foster homes— formal kin care, group homes, or residential treatment centers. We  reported ACF’s estimates of foster children’s use of psychotropic  medications and of receipt of mental health services by foster children.  ACF’s reports identified children with a potential mental health need by  selecting children whose scores were above a certain level on one of five  standardized psychometric scales that were used in NSCAW II and were  designed to measure emotional or behavioral problems. These scales  were the Child Behavior Checklist, which is based on caregiver reports;  the Youth Self-Report; the Teacher’s Report Form; the Children’s  Depression Inventory; and the Trauma Symptom Checklist for Children.  Questions in these scales were asked of the child, caregiver, or teacher,  depending on the scale. We reviewed ACF’s report on psychotropic  medication use to examine the extent to which the children ACF identified  as having a potential mental health need received any mental health  services within the past 12 months (or since the start of the child’s living  arrangement, if less than 12 months). We also interviewed officials from  ACF, AHRQ, and SAMHSA and representatives of provider organizations  and mental health and child welfare advocacy groups to obtain  information on the challenges foster children face in receiving appropriate   Finally, to examine related HHS initiatives, we  mental health treatments.reviewed HHS documents and interviewed agency officials to obtain  information about HHS’s activities to help states promote appropriate use  of mental health treatments for foster children.
To describe HHS’s investment in research to study children’s mental  health conditions and treatments, we requested data on research  activities and interviewed officials from selected HHS agencies that  conduct or sponsor children’s mental health research: NIH, FDA, AHRQ,  and CDC. We asked each agency for a list of research projects that  were conducted internally by agency staff or conducted by external  researchers and were funded by the agency for all or part of fiscal years  2008 through 2011. We used the following inclusion and exclusion  criteria for our analysis:  Include projects that tested children, as well as projects that tested  both children and adults, such as family studies.
Exclude research involving animals, projects that primarily studied  substance abuse or pervasive developmental disorders such as  autism, and large-scale surveys examining the prevalence of mental  health conditions or mental health service utilization.
Exclude grants that did not specifically fund research, such as grants  supporting student training or scientific conferences.
NIH was unable to provide an agency-wide estimate of spending on  children’s mental health research projects that met our criteria. Therefore  we requested data individually from the two institutes at NIH that,  according to agency officials, sponsor and conduct most of the children’s  mental health research—the National Institute of Mental Health (NIMH)  and the Eunice Kennedy Shriver National Institute of Child Health &  Human Development (NICHD). We assessed the reliability of data from  NIMH and NICHD by selecting a sample of research projects from each  to determine whether they met our criteria. When some research projects  in the NIMH sample appeared not to meet our criteria, we examined the  primary research focus identified for each project. We then systematically  excluded all projects with a primary research focus that did not appear to  meet our criteria, such as schizophrenia in adults. On the basis of our  review of the NIMH and NICHD samples, we determined that the data  were sufficiently reliable for the purposes of our report. Because other  institutes and centers at NIH may also have sponsored children’s mental  health research, we have likely underestimated NIH’s total investment.  We also determined that data from FDA, AHRQ, and CDC were  sufficiently reliable for our purposes. We also spoke with officials from  HHS agencies, representatives from provider and mental health advocacy  groups, and researchers to better understand research needs in  children’s mental health.
We conducted this performance audit from November 2011 to December  2012 in accordance with generally accepted government auditing  standards. Those standards require that we plan and perform the audit to  obtain sufficient, appropriate evidence to provide a reasonable basis for  our findings and conclusions based on our audit objectives. We believe  that the evidence obtained provides a reasonable basis for our findings  and conclusions based on our audit objectives.
subsections: section_title: Background
paragraphs: Children with mental health conditions can be treated with psychotropic  medications, psychosocial therapies, or a combination of both.
subsections: section_title: Psychotropic Medications
paragraphs: Psychotropic medications can be very effective in treating children with  mental health conditions, but they may also produce side effects, some of  which can be serious. For example, according to the American Academy  of Child & Adolescent Psychiatry (AACAP), medications used to treat  ADHD 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 ranging from mild to serious, such as sleeplessness, loss  of appetite, tics, agitation, hallucinations, liver problems, and suicidal  thoughts.
Research has shown that foster children take psychotropic medications at  much higher rates than other children covered by Medicaid. For example,  we previously reported that while about 5 to 10 percent of nonfoster  children in five states’ Medicaid programs took a psychotropic medication  in 2008, rates among children in foster care were about 20 to   39 percent. The use of five or more medications concomitantly (that is,  at the same time), while rare, was also higher among children in foster  care. We reported that several factors may have contributed to the  higher utilization rates among foster children, such as the increased  prevalence and greater severity of mental health conditions among these  children.
Studies have shown that rates of psychotropic medication use among all  children have increased. For example, one study found that the  percentage of children’s doctor visits involving psychotropic medications  increased by 75 percent from 1996 to 2007—from 6 percent to about   11 percent. Among these visits, those involving two or more  medications rose from about 14 percent to about 20 percent. Experts  have identified a number of potential factors that could account for the  increased use of psychotropic medications. For example, AACAP’s  guidelines on the use of psychotropic medications for children identified  explanations such as the expanding evidence base demonstrating the  efficacy of these medications for children and the efforts of  pharmaceutical companies to market drugs to prescribers and  consumers.
Pharmacy benefit managers are firms that administer prescription drug benefits on  behalf of health insurance plans.
Furthermore, some studies found that the prescribing of antipsychotics  was higher among publicly insured children than among privately insured  children, and even higher among foster children. One study found that  children enrolled in Medicaid were prescribed antipsychotic medications  at over four times the rate of children with private insurance in 2004. In  addition, AHRQ funded a study of antipsychotic prescribing based on  Medicaid claims from 13 states, which found that utilization of  antipsychotics in 2007 was much higher among foster children than  among nonfoster children in Medicaid—12.4 percent on average versus  1.4 percent, respectively. Prescribing of antipsychotics is a concern for  CMS and state Medicaid programs not only because of safety issues, but  also because these medications are costly. They represented the single  largest drug expenditure category for Medicaid in 2007—over   $2.8 billion.
One reason for particular concern about growing use of antipsychotics  and other psychotropic medications in children is that manufacturers do  not always test medications for use in children. Manufacturers are  responsible for conducting clinical trials and demonstrating their products’  safety and efficacy to FDA, which is responsible for making decisions  about whether and how medications can be marketed for children and for  ensuring that manufacturers incorporate information from pediatric clinical  trials into medication labels when required. However, because children  are a small part of the overall population and physicians can prescribe  medications off-label to children even if the medications have been tested  only in adults, manufacturers may lack economic incentives to conduct  trials with children. According to a recent analysis by FDA scientists,  fewer than half of all medications were adequately labeled for pediatric  use in 2009. The Best Pharmaceuticals for Children Act (BPCA) and the  Pediatric Research Equity Act (PREA) address testing of medications in  children by authorizing FDA to provide incentives for or require  manufacturers to conduct pediatric studies in certain circumstances.  (For more information on BPCA and PREA and label changes for  psychotropic medications resulting from these laws, see app. III.)
section_title: Psychosocial Therapies
paragraphs: Psychosocial therapies are mental health treatments that generally  involve 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   Psychosocial therapies that  treat children with mental health conditions.have been shown to be effective in treating mental health conditions may  be referred to as evidence-based therapies (EBT). While there is no  standard definition of what constitutes “evidence-based,” some federal  agencies and provider organizations evaluate and compile information on  available therapies. For example, SAMHSA maintains the National  Registry of Evidence-based Programs and Practices, a list of treatments  that have been assessed by independent evaluators and rated on the  strength of the evidence showing their effectiveness. Provider  organizations may also make recommendations to providers on which  treatments to use. For example, AACAP publishes practice parameters  that contain recommendations for treating specific disorders, with each  recommendation labeled to indicate the strength of the evidence  underlying it.
Although psychosocial therapies may be effective for many children, the  Institute of Medicine and others have reported that a shortage of mental  health providers in general is a major factor affecting access to services,  especially for children. Furthermore, finding a mental health professional  who has been trained to provide a specific EBT can be a challenge  because training in EBTs is not uniformly required in medical and  professional schools.
section_title: Foster Care
paragraphs: Children enter foster care when they have been removed from their  parents or guardians and placed under the responsibility of a state child  welfare agency, often because of maltreatment at home. Removal from  the home can occur for multiple reasons, including parental violence,  substance abuse, severe depression, or incarceration. According to ACF,  46 percent of children investigated by child welfare services came to a  state’s attention primarily because of a report of neglect, and 27 percent  had experienced physical abuse as the most serious form of recorded  maltreatment. Other children are referred when their own behaviors or  conditions are beyond the control of their families or they pose a threat to  themselves or the community. Children in foster care can experience  traumatic stress due to maltreatment experienced at home as well as the  trauma of being removed from their homes. Trauma significantly  increases the risk of mental health problems, difficulties with social  relationships and behavior, physical illness, and poor school  performance. Furthermore, child mental health experts have stated that  the traumatic stress symptoms foster children may experience are often  the same as symptoms that can indicate other mental health conditions,  which may lead to misdiagnosis and inappropriate treatments.
When children are taken into foster care, the state’s child welfare agency  becomes responsible for determining where the child should live and  providing the child with needed supports. The agency may place the  foster 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. The agency is responsible for arranging needed services,  including mental health services. Federal officials, providers, and child  and mental health advocacy groups have identified several factors that  create challenges for foster children in receiving appropriate mental  health services. Foster children can experience frequent changes in their  living placements, which can lead to a lack of continuity in mental health  care, and new providers may not have the medical history of the patient.This lack of stability can lead to treatment disruptions and can increase  the number of medications prescribed. Coordinating mental health care  for foster children may be difficult for both the medical provider and the  case worker because multiple people are making decisions on the child’s  behalf. In addition, caseworkers in child welfare agencies may have large  caseloads, making it difficult for them to ensure that foster children’s  mental health needs are being met.
As a condition of receiving federal child welfare grant funding, state child  welfare agencies must annually submit plans to ACF that, among other  things, address the mental and other health needs of foster children. In  2011, the Child and Family Services Improvement and Innovation Act  (Child Improvement Act) required states, as part of these plans, to identify  protocols for monitoring foster children’s use of psychotropic medications  and to address how emotional trauma associated with children’s  maltreatment and removal from their home will be monitored and  treated. As part of their June 2012 Annual Progress and Service  Reports to ACF, states provided information on their plans for monitoring  psychotropic medication prescribing and treatment of emotional trauma  for foster children. Prior to the Child Improvement Act, many states had  already implemented policies and practices regarding prescribing  psychotropic medications for foster children, such as issuing written  guidelines for prescribers, collecting data to monitor prescribing, requiring  informed consent from relevant parties before filling a prescription, and  requiring consultation with a mental health specialist for prescriptions  exceeding certain dosage thresholds.
section_title: Children in Medicaid Took Psychotropic Medications at a Higher Rate Than Those with Private Insurance, and Most Children in Medicaid with a Potential Mental Health Need Did Not Receive Services
paragraphs: On average, 6.2 percent of noninstitutionalized children in Medicaid  nationwide took psychotropic medications during a calendar year from  2007 through 2009, and 21 percent of those children took an  antipsychotic medication. The estimates for privately insured children  were lower. About 14 percent of children in Medicaid had a potential need  for mental health services, and over two-thirds of them did not receive  any services. CMS and states have made efforts to ensure that children  receive appropriate mental health services, but CMS’s ability to monitor  their receipt of services for which they were referred is limited because  CMS does not collect information from states on whether children in  Medicaid have received services for which they were referred.
subsections: section_title: About 6 Percent of Children in Medicaid Took Psychotropic Medications, and They Were over Twice as Likely as Privately Insured Children to Take an Antipsychotic
paragraphs: Our analysis of MEPS data from 2007 through 2009 found that, on  average, 6.2 percent of children in Medicaid nationwide—those who were  not in institutions or in foster care and were ages 0 through 20—took at  least one psychotropic medication during a calendar year. The  comparable rate for privately insured children was lower—4.8 percent.  The utilization rate was over twice as high for boys as for girls in  Medicaid—8.4 percent versus 3.9 percent. There is a higher prevalence  among boys of certain mental health disorders for which psychotropic  medications are prescribed, which is one possible explanation for this  difference. Among children in Medicaid who took psychotropic  medications, utilization was highest among youth ages 18 through 20— 12.7 percent—and lowest among children under age 5—less than   1 percent. Utilization rates for privately insured children were highest  among children ages 12 through 17—7.5 percent. (See app. III for more- detailed information on children who took psychotropic medications.)
Nationwide, almost half of children in Medicaid who took psychotropic  medications took multiple psychotropic medications in a 1-year period.  Specifically, our analysis found that 28 percent of the children in Medicaid  who took psychotropic medications took two medications within a year,  and 16 percent took three or more. Among privately insured children who  took psychotropic medications, 22 percent took two medications within a  year, and 11 percent took three or more. This finding may reflect  concomitant use of multiple medications—that is, medications taken in  combination—or providers prescribing different drugs over time to find  one that works best for the child.
The most common types of psychotropic medications taken by children  were ADHD medications, antidepressants, and antipsychotics. We found  that, of children who took psychotropic medications, about three-fourths  took ADHD medications. According to a recent analysis by FDA officials,  utilization of ADHD medications increased 46 percent from 2002 to 2010,  and methylphenidate, a stimulant used to treat ADHD, was the most  commonly prescribed medication for adolescents ages 12 through 17. Antidepressants were the second most common type of medication  taken—about one-fourth of the children in Medicaid and one-third of  privately insured children who were taking psychotropic medication took  an antidepressant. (See table 1.)
G. Chai et al., “Trends of Outpatient Prescription Drug Utilization in US Children, 2002- 2010,” Pediatrics, vol. 130, no. 1 (2012).
The difference between children in Medicaid and privately insured children was statistically  significant.
Our analysis also found that children in Medicaid were over twice as likely  as privately insured children to take an antipsychotic medication. Overall,  about 1.3 percent of children in Medicaid and 0.5 percent of privately  insured children took antipsychotics.were covered by Medicaid or private insurance, the majority of children  who took an antipsychotic were males ages 6 through 17.
Differences between children in Medicaid and those with private insurance were not  statistically significant. visits in the same year.medication-management follow-up visit, which pediatric provider  organizations recommend. For example, guidelines from the American  Academy of Pediatrics state that physicians consider follow-up visits  every 3 to 6 months for children taking ADHD medications to monitor the  child’s behavior and medication side effects.
section_title: About 14 Percent of Children in Medicaid Had a Potential Mental Health Need, but Most Did Not Receive Mental Health Services
paragraphs: Our analysis of national survey data from 2007 through 2009 indicated  that 14 percent of noninstitutionalized children in Medicaid and 9 percent  of noninstitutionalized privately insured children had a potential mental  health need. As described earlier, these estimates of potential mental  health need are based on a broad measure of a child’s emotional or  behavioral impairment, as reported by parents. One possible  explanation for the higher level of potential mental health need among  Medicaid children could be the lower average family incomes of children  enrolled in Medicaid compared to those of children with private insurance.  Some studies have found that low income is associated with an increased  prevalence of mental health conditions.
Our analysis also indicated that most children with a potential mental  health need did not receive mental health services, regardless of their  insurance type. For example, over 80 percent of children with a potential  need, whether covered by Medicaid or private insurance, did not receive  any psychosocial therapy, and over 70 percent did not have any mental  health office visits. (See table 2.) While it is not possible to assess which  services a child may need on the basis of survey data, our analysis  indicates that most children whose parents indicated a significant level of  behavioral impairment did not even receive a mental health evaluation.  Even when a child received at least one mental health service, it is not  possible to know whether his or her mental health needs were fully met.
About one-fourth of all children with a potential mental health need had a  mental health office visit. Among Medicaid children who had mental  health office visits, about 40 percent saw a psychiatrist and 30 percent  saw a pediatrician at least once in a calendar year. (See table 3.) Just  over half of children with any mental health office visits received  psychosocial therapy, which suggests that nearly half of all mental health  office visits involved another type of service, such as diagnostic  assessment or medication management. Among children in Medicaid with  at least one mental health office visit, the average number of visits in a  year was about seven.
CMS has initiated activities to help ensure that children in Medicaid  receive appropriate mental health services. For example, CMS has begun  working with states to improve their monitoring of the prescribing of  psychotropic medications, and in August 2012 the agency issued an  Informational Bulletin to states titled, “Collaborative Efforts and Technical  Assistance Resources to Strengthen the Management of Psychotropic  Medications for Vulnerable Populations.” The bulletin provided a link to  additional information on the CMS website that discusses practices some  states have employed to enhance the ability of their Drug Utilization  Review programs to monitor psychotropic medication prescribing, such as  using Drug Utilization Reviews to identify and contact providers whose  prescribing patterns vary significantly from recommended standards of  care for children.Measures Program, CMS is working with states to collect data on three   In addition, through its voluntary Pediatric Quality  quality measures related to mental health, including receipt of follow-up  care for children prescribed ADHD medication.
CMS has also begun working with states to improve access to mental  health services through the EPSDT benefit. Most children in Medicaid are  entitled to services under EPSDT, which covers regular checkups and  screenings as well as treatment services. Children found to have mental  health needs at a screening are generally entitled to treatment services to  address those needs, whether or not the services are typically covered  under the Medicaid program in the child’s state. According to CMS, its  National EPSDT Improvement Workgroup has a Behavioral Health  Subgroup that is developing an action plan to determine steps CMS can  take to work with states to promote access to effective mental health care  for children through EPSDT. The agency also told us it plans to issue an  Informational Bulletin on children’s behavioral health screening, referral,  and treatment, which it will disseminate to state Medicaid agencies and  others in early 2013.
As required under federal law, states annually submit data to CMS on the  provision of services under EPSDT, such as the number of children  referred for additional services as a result of checkups and screenings.  These data may include referrals for mental health services for children  found to have mental health needs during screenings. We previously  reported that CMS does not impose requirements beyond this federal law  and, accordingly, does not collect information from states on whether  children received the services for which they were referred, which limits  CMS’s ability to monitor whether children in Medicaid are receiving the  services they need. We recommended that CMS work with states to  identify options for collecting such information. CMS officials told us that  the agency had contracted for a study examining options for collecting  data from state Medicaid programs on EPSDT referrals; the study  concluded that states were unlikely to be able to produce accurate  information on referred services using existing data sources. The officials  also said that, as of September 2012, CMS was in the process of  identifying alternative approaches for collecting data on children’s receipt  of treatment services, such as analyzing national survey data. However,  the alternatives currently under consideration would not produce the data  from all states that would enable CMS to monitor at the state level  children’s receipt of treatment services for which they were referred  through Medicaid.
States have also made efforts to increase children’s access to mental  health services. Because many children receive mental health services  from nonspecialists, 28 states have programs to facilitate consultation  between primary care providers and child psychiatrists. For example,  under Washington state’s Second Opinions program, psychiatrists review  Medicaid psychotropic prescriptions that exceed certain safety  thresholds—such as dose or use of combinations of medications—and  provide a second opinion to the prescribing physician. An evaluation of  Washington’s Second Opinions program and its Partnership Access  Line—the state’s voluntary program for physicians seeking child  psychiatry consultations—found that such consultations are cost-effective  and that they have resulted in an increase in referrals for psychosocial  therapy and a decrease in prescribing of antipsychotic medications.  Similarly, Massachusetts’s program, the Massachusetts Child Psychiatry  Access Program, has been found to increase the ability of primary care  providers to treat or refer their patients with mental health needs. In a  survey of primary care providers participating in the Massachusetts  program, 63 percent reported that they were usually able to meet the  needs of their psychiatric patients, an increase from only 8 percent of  providers before they enrolled in the program.
Some states have also begun to integrate mental health services into  primary care settings in an effort to increase access to mental health  services. For example, through the “State Option to Provide Health  Homes for Enrollees with Chronic Conditions,” authorized under the  Patient Protection and Affordable Care Act, states have the option to  implement person-centered health care delivery systems, known as  health homes.render comprehensive services for individuals with chronic conditions,  must address mental health and substance abuse treatment needs.  According to CMS, a number of states are developing proposals to  establish health homes as part of their Medicaid programs, and CMS is  providing technical assistance to these states.
section_title: Nearly One-Fifth of Foster Children Took Psychotropic Medications, and Nearly One-Third of Foster Children Who May Have Needed Mental Health Services Did Not Receive Them
paragraphs: ACF reported that 18 percent of foster children ages 1 through 19 took  psychotropic medications. In addition, ACF found that 30 percent of foster  children with a potential mental health need did not receive mental health  services in a 12-month period. HHS is taking several steps to promote  appropriate mental health treatment for foster children.
subsections: section_title: ACF Reported That 18 Percent of Foster Children Took Psychotropic Medications
paragraphs: ACF reported that 18 percent of foster children were taking one or more  psychotropic medications at the time they were surveyed, although  utilization varied widely by living arrangement.children who lived in group homes or residential treatment centers had  much higher rates of psychotropic medication use than foster children   ACF reported that foster  living in nonrelative foster homes or formal kin care—48 percent versus  14 percent and 12 percent, respectively. The higher utilization rate  among children living in group homes or residential treatment centers  may be related to these children having higher rates of potential mental  health need—about 69 percent had a potential mental health need  compared to about 44 percent of children living in nonrelative foster  homes. Another study found that child welfare workers were more likely  to place children with behavior problems in a group living arrangement  than with a foster family.
In addition to reporting on overall use of psychotropic medications, ACF  reported on concomitant use of psychotropic medications and on the use  of antipsychotics by foster children. Among foster children who took  psychotropic medication, ACF reported that 13 percent took three or more  psychotropic medications concomitantly. 6.4 percent of foster children took an antipsychotic medication and that  the majority were ages 6 through 11.
Estimates of concomitant use are based on NSCAW II phase 2 data (collected during  October 2009 through January 2011). This estimate does not include children in formal kin  care. Less than 1 percent of children in formal kin care were taking three or more  medications at the time of the survey. Stambaugh et al., OPRE Report #2012-33, 4.
section_title: ACF Reported That 30 Percent of Foster Children with a Potential Mental Health Need Did Not Receive Mental Health Services
paragraphs: ACF reported that 30 percent of foster children with a potential mental  health need had not received any mental health services within the  previous 12 months or since the start of the child’s living arrangement, if  less than 12 months. (See fig. 1.) Although 70 percent of foster children  with a potential mental health need received at least one mental health  service, it is not possible to know the extent to which the child’s mental  health needs were met.
In response to concerns related to the prescribing of psychotropic  medications for foster children, HHS convened an interagency workgroup  on the use of psychotropic medications for foster children in summer  2011. Led by ACF, the workgroup also has representatives from CMS,  SAMHSA, NIH, AHRQ, and FDA. The workgroup developed a plan to  expand the use of evidence-based screening, diagnosis, and  interventions; strengthen the oversight and monitoring of psychotropic  medications; and expand the overall knowledge and evidence base  regarding medications and psychosocial treatments for foster children  with mental health or trauma-related needs. The primary activity of the  workgroup is to meet regularly to share information about individual and  joint agency activities related to foster children’s mental health. For  example, the workgroup convened a meeting in September 2011 with  researchers to increase federal staff’s knowledge about psychotropic  medication use among foster children, their mental health needs, the  extent to which best practices on state oversight and monitoring of  psychotropic medications exist, and future data needs. On the basis of  the efforts of the workgroup, HHS has identified several areas where  more research is needed, including clinical trials related to foster  children’s use of psychotropic medications, studies on differences  between trauma and mental health diagnoses, and studies on EBTs for  foster children.
Three member agencies of the workgroup—ACF, CMS, and SAMHSA— have collaborated on certain activities regarding use of psychotropic  medications among foster children. In November 2011, the three  agencies sent a joint letter to state Medicaid directors, mental health  authorities, and child welfare directors. This letter contained information  on the three agencies’ activities and resources that aim to improve the  mental health and well-being of foster children, such as ACF’s Child  Welfare Information Gateway website and SAMHSA’s National Traumatic  Stress Initiative grants. These agencies also jointly held several webinars  to disseminate this information. In addition, they hosted a summit in  August 2012 for state child welfare, Medicaid, and mental health agencies  to help states develop psychotropic drug oversight practices and to  facilitate interagency coordination for foster children. ACF is also working  with CMS to develop quality measures specific to foster children as part  of CMS’s Pediatric Quality Measures Program.
In addition to participating in the workgroup, ACF is working with states to  build the capacity of child welfare agencies to effectively respond to the  complex needs of foster children. For example, in addition to overseeing  the NSCAW surveys, ACF took the following actions:
ACF issued a Program Instruction to help states implement the new  requirements in the Child Improvement Act. In the Program  Instruction, ACF described five components that state child welfare  agencies should include in their plans to monitor psychotropic  medications. In addition, the instructions provided guidelines to  states on treating and monitoring children experiencing emotional  trauma, another requirement of the law. As of August 2012, ACF  officials told us that all states had submitted their plans as required by  the Child Improvement Act and the agency was reviewing them.
ACF published two Information Memoranda for state child welfare  agencies—one on promoting social and emotional well-being for  children in child welfare and one on best practices in state  psychotropic drug oversight.
ACF has provided information about psychotropic medication  prescribing and monitoring on its Child Welfare Information  Gateway—a website that provides resources for child welfare  agencies.
SAMHSA has provided funding, guidance, and information to states and  others to increase appropriate mental health services among foster  children. For example:
For its fiscal year 2012 National Child Traumatic Stress Initiative  grants, SAMHSA placed a specific emphasis on child welfare. The  initiative supports services for children experiencing trauma-related  behavioral health problems and places a strong focus on using  evidence-based psychosocial therapies.
SAMHSA worked with AACAP to develop guidance for service  providers and agency leaders on the use of psychotropic medications  among children, including foster children. Through its Systems of  Care grants, SAMHSA has also provided funding for foster children’s  mental health services; the agency reported in 2011 that 22 of its  grantees had a child welfare focus or a partnership with a child  welfare organization.
The 2012 SAMHSA-sponsored National Children’s Mental Health  Awareness Day event had a special focus on foster children, and  SAMHSA is planning a meeting in January 2013 titled “Improving  Outcomes for African American Males in Foster Care.”
section_title: NIH Spent an Estimated $1.2 Billion on Children’s Mental Health Research during Fiscal Years 2008 through 2011
paragraphs: NIH spent about $1.2 billion on research projects related to children’s  mental health; NIMH was responsible for most of this funding, with the  rest being spent by NICHD. Other HHS agencies—FDA, AHRQ, and  CDC—spent an estimated $16 million on external research projects  related to children’s mental health.
subsections: section_title: Most NIH Funding for Children’s Mental Health Research Was Spent by NIMH
paragraphs: During fiscal years 2008 through 2011, NIH spent about $1.2 billion to  support over 1,200 children’s mental health research projects, most of   NIMH accounted for 81 percent—about  which were supported by NIMH.$956 million—of NIH’s funding for children’s mental health research. (See  fig. 2.) NIMH’s $956 million (which represented about 18 percent of  NIMH’s total research budget in fiscal years 2008 through 2011)  supported slightly over 900 research projects related to mental health in  children ages 18 or younger. The most-commonly studied mental health  conditions were ADHD, major depression, and bipolar disorder. Nearly all  of the projects (97 percent) were conducted externally under grants and  contracts, with expenditures of about $861 million. The remaining  research projects, for which NIMH spent about $95 million, were  conducted internally by NIMH scientists. For example, NIMH scientists  used brain imaging techniques to examine how brain development in  children with ADHD differed from typical brain development in children.
About half of NIMH-sponsored research projects (482) examined mental  health treatments for children, with more projects studying psychosocial  therapies than psychotropic medications. (See table 4.) Of the 482  treatment research projects, 325 involved testing psychosocial therapies.  For example, one project tested the effect of therapies such as parent  training and skill building on preventing negative outcomes such as  substance use and school truancy in middle-school-aged girls in foster  care. Psychotropic medication studies accounted for 137 of the 482   For example, one project tested the effect of an  research projects.antidepressant medication on brain activity in children with anxiety  disorders, with the goal of better understanding how the medication  works. NIMH also funded 66 research projects that tested the effects of  combinations of treatments, such as two medications or a medication and  a psychosocial therapy. For example, one project tested the effect of  parent training—a psychosocial treatment—with and without the addition  of a stimulant (or of a stimulant and an antipsychotic medication) on  children with a disruptive behavior disorder in combination with ADHD  and severe aggression. NIMH officials told us that the agency does not  have quotas for the kinds of treatment studies it funds and encourages  grant applications from researchers for both psychosocial and  psychotropic treatment studies. However, officials noted that NIMH  expects to fund more projects examining psychosocial therapies than  projects that test medications because researchers may perceive  psychosocial therapies to be less risky for children and not all  psychotropic medications are approved for pediatric use.
NICHD spent about $218 million to sponsor 324 research projects related  to mental health in children in fiscal years 2008 through 2011.  Almost all  projects (98 percent) were conducted externally under grants and  contracts, with expenditures of about $195 million. NICHD’s own  scientists conducted the remaining research projects, for which NICHD  spent about $23 million. Of the 324 research projects, 72 focused on  mental health conditions, such as depression and ADHD.NICHD sponsored one study that examined the effectiveness of a mood  stabilizing psychotropic medication—lithium—in children ages 7 to 17 with  bipolar disorder.
For example,  NIMH and NICHD collectively spent about $309 million during this period  to support almost 350 research projects that examined children’s mental  health in minority and health disparity populations. NIMH sponsored 297  such projects, with expenditures of about $283 million, and NICHD spent  about $26 million to sponsor 50 projects. For example, NIMH sponsored a  study of Latino adolescents with depression that tested the effectiveness  of a psychosocial therapy—cognitive behavioral therapy—with and  without an additional educational component for parents.
NIMH and NICHD also funded translational research, treatments in real world settings and identifies effective strategies for  implementing them in communities. For example, NICHD sponsored a  research project that evaluated the effectiveness of a psychosocial  therapy for girls with post-traumatic stress disorder and concurrent  substance abuse disorders who were involved with the juvenile justice  system. The study examined ways to adapt the treatment for this  population, and the researchers planned to use the study as a model to  adapt other EBTs for children involved in the juvenile justice and child  welfare systems.
The data NIMH and NICHD provided did not identify which projects were translational,  so it was not possible to determine the total number of projects or how much was spent on  this research.
section_title: Other HHS Agencies Spent an Estimated $16 Million on Children’s Mental Health Research Projects
paragraphs: Together, FDA, AHRQ, and CDC spent about $16 million on research  projects on children’s mental health in fiscal years 2008 through 2011.  FDA spent about $4.5 million on four external research projects on the  safety and effectiveness of psychotropic medications for children. For  example, FDA cosponsored a study with AHRQ that examined serious  cardiovascular events such as heart attack and stroke among children  taking ADHD medications. In addition, at the end of fiscal year 2011, FDA  awarded a contract for about $6 million for a study on antipsychotic  medications and the risk of type 2 diabetes in children; this study is  currently under way.
AHRQ spent about $8.6 million to fund five external research projects  related to children’s mental health in fiscal years 2008 through 2011.  Consistent with the agency’s focus on improving outcomes by  encouraging the use of evidence to make health care decisions, two of  the five research projects AHRQ supported compared outcomes of using  different mental health treatments. For example, one AHRQ-sponsored  project compared outcomes of using various antipsychotic medications to  treat children with ADHD who were enrolled in Medicaid, including  children in foster care. Child mental health experts we spoke with  highlighted the need for more research that compares different  psychotropic medications. For example, one federal official noted that all  antidepressant medications bear the same “black box” warning describing  the potential for increases in suicidal thinking in childrenis limited information about whether any antidepressants are safer or  more effective for children than other antidepressants.
CDC spent about $2.7 million on two external research projects during  fiscal years 2008 through 2011, one on ADHD and the other on Tourette  Syndrome and other tic disorders. The ADHD project examined topics  including the prevalence of ADHD, the prevalence of ADHD in  combination with other mental health conditions, and children’s utilization  of psychosocial and medication treatments. The project on tic disorders  also looked at children’s utilization of different kinds of treatments, as well  as their school performance, social relationships, and factors associated  with poorer functioning. Both projects were designed to include a diverse  sample of children with the aim of detecting differences due to sex or  race/ethnicity. For example, the ADHD study oversampled girls and  included large samples of Black, Latino, and American Indian children.
section_title: Concluding Observations
paragraphs: Mental health conditions such as ADHD, depression, and bipolar disorder  can have debilitating effects on a child’s life, and early detection and  treatment of childhood mental health conditions can improve children’s  outcomes into the future. While some children receive highly effective  mental health treatments, our findings suggest that many children,  including some in Medicaid and in foster care, may not be receiving  appropriate treatment. Our analysis of national survey data indicates that  concerns raised by providers, children’s advocates, and others about  potentially inappropriate prescribing of psychotropic drugs for some  children and a lack of needed mental health services for some children  may be warranted. Antipsychotic medications are of particular concern in  light of the very serious side effects they can have for children, the limited  understanding of their long-term effects, and their high cost. Children in  Medicaid and in foster care are prescribed these medications at higher  rates than other children. Furthermore, most children in Medicaid and  many children in foster care with potential mental health needs do not  receive mental health services that could help them. Differing rates of  medication among the groups of children do not necessarily represent a  problem, because potential factors beyond the scope of this review could  help explain the differences. Nonetheless, these findings do suggest that  the recent federal and state initiatives to improve monitoring and  oversight are appropriate, and that continued assessment of the  prescribing of psychotropic medications to vulnerable populations and of  the receipt of mental health services is important. Initiatives such as  CMS’s National EPSDT Improvement Workgroup and plans to help states  improve their monitoring efforts, as well as the ACF-led interagency  workgroup on the use of psychotropic medications for foster children,  have the potential to help ensure that vulnerable children in Medicaid and  foster care have access to effective mental health treatments that are  appropriate for their mental health conditions. We recommended in 2011  that CMS identify options to collect information from states on whether  children in Medicaid receive the services for which they are referred  through their EPSDT-mandated screenings and check-ups, which would  include referrals for specialty care such as mental health services. CMS  has begun to explore options to address this recommendation, but it has  not yet identified ways to systematically collect such data from state  Medicaid programs. We continue to believe this recommendation is valid,  and our findings in this report underscore the importance of HHS’s  monitoring the receipt of needed referral and treatment services, including  those for mental health, by children in Medicaid.
section_title: Agency Comments
paragraphs: HHS did not comment on our findings but provided technical comments,  which we incorporated as appropriate.
As arranged with your office, unless you publicly announce the contents  of this report earlier, we plan no further distribution until 30 days after its  issuance date. At that time, we will send copies of this report to the  Secretary of Health and Human Services and other interested parties. In  addition, the report will be available at no charge on the GAO website at  http://www.gao.gov.
If you or your staff members have any questions, please contact me at  (202) 512-7114 or iritanik@gao.gov. Contact points for our Offices of  Congressional Relations and Public Affairs may be found on the last page  of this report. Major contributors to this report are listed in appendix IV.
section_title: Appendix I: Methodology Used to Analyze the Medical Expenditure Panel Survey
paragraphs: To provide information on the use of psychotropic medications and other  mental health services by children covered by Medicaid, the Children’s  Health Insurance Program (CHIP), and private insurance, we analyzed  nationwide data from the Medical Expenditure Panel Survey (MEPS) from  2007 through 2009. MEPS is a nationally representative survey of  families, medical providers, and employers across the United States  administered by the Agency for Healthcare Research and Quality  (AHRQ). MEPS collects self-reported information on individuals’  demographics, health and insurance status, and use of medical services  by setting and provider type, among other things. Specifically, we  examined the use of psychotropic medications and mental health-related  office visits, therapy visits, and behavioral impairment. We pooled 3 years  of data to obtain a sample size large enough to conduct our analyses,  and reported average annual estimates. To conduct our analysis, we  constructed two cohorts of children who were insured for at least 10  months in 2007, 2008, or 2009—those who were enrolled in Medicaid or  CHIP and those covered by private insurance. We included children  ages 0 through 20 and excluded children in foster care from our analysis.In total, the sample Medicaid/CHIP cohort had 11,224 children, and the  sample private insurance cohort had 11,639 children.
section_title: Appendix II: Food and Drug Administration Reviews of Psychotropic Drug Label Changes for Children
paragraphs: The Food and Drug Administration (FDA) is responsible for reviewing the  results of pediatric studies conducted under two related laws—the Best  Pharmaceuticals for Children Act (BPCA) and the Pediatric Research  Equity Act (PREA). BPCA is a program under which manufacturers may  receive an additional 6 months of market exclusivity in exchange for  conducting pediatric studies. Under PREA, subject to certain exceptions,  drug manufacturers must conduct pediatric studies before a drug can be  marketed. FDA is responsible for reviewing the results of pediatric  studies submitted under BPCA and PREA and ensuring manufacturers  incorporate new information on pediatric use into medication labels when  required. During fiscal years 2008 through 2011, 168 label changes  resulted from studies conducted under these laws, 16 of which were for  psychotropic medications. For example, the label for Invega, an atypical  antipsychotic medication, was changed to indicate that it is safe and  effective for the treatment of schizophrenia in children as young as   age 12. (See table 6 for information on all 16 label changes.) In addition  to reviewing label changes related to BPCA and PREA, in 2009 FDA  began working with manufacturers to change the labels of all atypical  antipsychotics to more clearly present data on their metabolic risks for  children, which an FDA official said will help prescribers in selecting  medications for their patients.
section_title: Appendix III: Results of the Medical Expenditure Panel Survey Analysis
paragraphs: Tables 7 and 8 provide estimates of children’s utilization of psychotropic  medications and other mental health services, based on our analysis of  MEPS data.
section_title: Appendix IV: GAO Contact and Staff Acknowledgments
subsections: section_title: GAO Contact
section_title: Staff Acknowledgments
paragraphs: In addition to the contact named above, Helene F. Toiv, Assistant  Director; Laura Brogan; Britt Carlson; Sandra George; Giselle Hicks;  Hannah Locke; Roseanne Price; and Hemi Tewarson made key  contributions to this report.
section_title: Related GAO Products
paragraphs: 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.
Medicaid and CHIP: Most Physicians Serve Covered Children but Have  Difficulty Referring Them for Specialty Care. GAO-11-624. Washington,  D.C.: June 30, 2011.
Pediatric Research: Products Studied under Two Related Laws, but  Improved Tracking Needed by FDA. GAO-11-457. Washington, D.C.:  May 31, 2011.
Medicaid and CHIP: Reports for Monitoring Children’s Health Care  Services Need Improvement. GAO-11-293R. Washington, D.C.:   April 5, 2011.
Foster Care: State Practices for Assessing Health Needs, Facilitating  Service Delivery, and Monitoring Children’s Care. GAO-09-26.  Washington, D.C.: February 6, 2009.
Prescription Drugs: FDA’s Oversight of the Promotion of Drugs for Off- Label Uses. GAO-08-835. Washington, D.C.: July 28, 2008.