United States General Accounting Office Washington, DC 20548 August 11, 2003 ERRATA CHILD WELFARE AND JUVENILE JUSTICE: Federal Agencies Could Play a Stronger Role in Helping States Reduce the Number of Children Placed Solely to Obtain Mental Health Services (GAO-03-397, April 21, 2003) Page 3, paragraph 1, third sentence should read: “Child welfare directors in 6 other states and the District of Columbia advised us that their states do not allow parents to place children voluntarily with child welfare 6 agencies to access such services. ” Page 3, footnote 6 should read: “The 6 states are Florida, Hawaii, Missouri, Montana, New Hampshire, and Texas, based on information received in response to our survey concerning placements in fiscal year 2001. However, New Hampshire indicated that the state introduced voluntary services in state fiscal year 2002 and that it anticipates that some parents will seek placement for their children.” Page 14, footnote 14 should read: “Nineteen states provided estimates. Eleven states could not provide the data requested, 6 states and the District of Columbia said the practice was either not legal in their states or that the state generally did not allow parents to place their children solely to receive mental health services, and 10 states could not provide the data requested but indicated that voluntary placement happens. Four states did not respond to the survey. Page 15, Table 2, the following states should have only the following table notes: “Georgia b” “Kansas b” “Montana c” Page 16, Table 2, table note ‘c’ should read: c “ The practice of voluntary placement or relinquishment is either not legal in the state or the state generally does not allow parents to place their children solely to receive mental health services.” United States General Accounting Office GAO Report to Congressional Requesters April 2003 CHILD WELFARE AND JUVENILE JUSTICE Federal Agencies Could Play a Stronger Role in Helping States Reduce the Number of Children Placed Solely to Obtain Mental Health Services GAO-03-397 April 2003 CHILD WELFARE AND JUVENILE JUSTICE Highlights of GAO-03-397, a report to Federal Agencies Could Play a Stronger Congressional Requesters Role in Helping States Reduce the Number of Children Placed Solely to Obtain Mental Health Services Recent news articles in over Child welfare directors in 19 states and juvenile justice officials in 30 states describe the difficulty 30 counties estimated that in fiscal year 2001 parents placed over many parents have in accessing 12,700 children into the child welfare or juvenile justice systems so that mental health services for their these children could receive mental health services. Nationwide, this number children, and some parents choose is likely higher because many state child welfare directors did not provide to place their children in the child welfare or juvenile justice systems data and we had limited coverage of county juvenile justice officials. in order to obtain the services they Although no agency tracks these children or maintains data on their need. GAO was asked to determine: characteristics, officials said most are male, adolescent, often have multiple (1) the number and characteristics problems, and many exhibit behaviors that threaten the safety of themselves of children voluntarily placed in the and others. child welfare and juvenile justice systems to receive mental health Neither the child welfare nor the juvenile justice system was designed to services, (2) the factors that serve children who have not been abused or neglected, or who have not influence such placements, and committed a delinquent act. According to officials in the 6 states we visited, (3) promising state and local limitations of both public and private health insurance, inadequate supplies practices that may reduce the need of mental health services, limited availability of services through mental for child welfare and juvenile justice placements. health agencies and schools, and difficulties meeting eligibility rules for services influence such placements. Despite guidance issued by the various federal agencies with responsibilities for serving children with mental illness, misunderstandings among state and local officials regarding the roles of the various agencies that provide such services pose additional challenges The Departments of Health and to parents seeking such services for their children. Human Services (HHS) and Justice (DOJ) should consider the Officials in the states we visited identified practices that they believe may feasibility of tracking children reduce the need for some child welfare or juvenile justice placements. placed by their parents in the child These included finding new ways to reduce the cost of or to fund mental welfare and juvenile justice health services, improving access to mental health services, and expanding systems to obtain mental health the array of available services. Few of these practices have been rigorously services. HHS, DOJ, and the Department of Education evaluated. (Education) should develop an interagency working group to Factors Influencing Placement identify the causes of the misunderstandings at the state and local levels and create an action plan to address those causes. These agencies should also continue to encourage states to evaluate the programs that the states fund or initiate and determine the most effective means of disseminating the results of these and other available studies. www.gao.gov/cgi-bin/getrpt?GAO-03-397. To view the full report, including the scope and methodology, click on the link above. For more information, contact Cornelia Ashby at (202) 512-8403 or email@example.com. Contents Letter 1 Results in Brief 4 Background 7 While No Formal Tracking Occurs, Available Estimates Indicate That Many Children Were Placed with the State—Primarily Adolescent Males—to Access Mental Health Services 14 Multiple Factors Influence Decisions to Place Children 20 States Have Developed a Range of Practices That May Reduce the Need for Some Mental Health-Related Child Welfare and Juvenile Justice Placements 31 Conclusions 38 Recommendations 39 Agency Comments 39 Appendix I Scope and Methodology 44 Appendix II State Statutes Containing Language Allowing Voluntary Placement to Obtain Mental Health Services 46 Appendix III Comments from the Department of Education 47 Appendix IV Comments from the Department of Health and Human Services 51 Appendix V Comments from the Department of Justice 56 Appendix VI GAO Contacts and Acknowledgments 59 GAO Contacts 59 Acknowledgments 59 Page i GAO-03-397 Children Placed to Obtain Mental Health Services Related GAO Products 60 Tables Table 1: Characteristics of Key Agencies with Responsibilities for Children with a Mental Illness 8 Table 2: States’ Estimated Number of Children Placed in the Child Welfare System to Obtain Mental Health Services in Fiscal Year 2001 15 Table 3: Estimated Number of Children Placed in the Juvenile Justice System in 33 Counties to Obtain Mental Health Services in Fiscal Year 2001 17 Table 4: Key Features of Health Insurance Parity Laws in 6 States 22 Table 5: Key Medicaid and SCHIP Programs for Children with Mental Illness in 6 States 23 Table 6: Survey Numbers and Response Rates 44 Table 7: Statutes in 11 States Allowing Parents to Place Children in Child Welfare Systems in Order to Obtain Mental Health Services While Retaining Custody of the Child 46 Page ii GAO-03-397 Children Placed to Obtain Mental Health Services Abbreviations ACF Administration for Children and Families AFCARS Adoption and Foster Care Analysis and Reporting System CMS Centers for Medicare & Medicaid Services DOJ Department of Justice EPSDT Early Periodic Screening, Diagnostic and Treatment ERISA Employee Retirement Income Security Act HCBS Home and Community-Based Services HHS Health and Human Services IDEA Individuals with Disabilities Education Act IEP Individualized Education Program JADE Juvenile Alternative Defense Effort MHPA Mental Health Parity Act OSERS Office of Special Education and Rehabilitative Services OJJDP Office of Juvenile Justice and Delinquency Prevention SAMHSA Substance Abuse and Mental Health Services Administration SCHIP State Children’s Health Insurance Program SED serious emotional disturbances SSI Supplemental Security Income TANF Temporary Assistance for Needy Families TBS Therapeutic Behavioral Services TEFRA Tax Equity and Fiscal Responsibility Act This is a work of the U.S. Government and is not subject to copyright protection in the United States. It may be reproduced and distributed in its entirety without further permission from GAO. It may contain copyrighted graphics, images or other materials. Permission from the copyright holder may be necessary should you wish to reproduce copyrighted materials separately from GAO’s product. Page iii GAO-03-397 Children Placed to Obtain Mental Health Services United States General Accounting Office Washington, DC 20548 April 21, 2003 The Honorable Susan M. Collins United States Senate The Honorable Pete Stark The Honorable Patrick Kennedy House of Representatives Recent news articles in over 30 states and prominent mental health advocacy organizations have reported on the difficulty many parents have accessing mental health services for their children with severe mental illness.1 In some cases, parents must choose to keep their children at home without receiving the mental health and supportive services that they need or to remove them from their home and seek alternative living arrangements by inappropriately placing them in the child welfare or juvenile justice system to obtain mental health services—two systems not designed to care for children solely because of their mental health needs.2 Although the people and conditions described in the reports varied, all documented that many children with severe mental illness needed services 1 Federal agencies and states have varying definitions for children with serious emotional disturbances (SED). For example, the Department of Health and Human Services’ (HHS) Substance Abuse and Mental Health Services Administration (SAMHSA) defines SED as a diagnosable mental disorder found in persons from birth to 18 years of age that is so severe and long lasting that it seriously interferes with functioning in family, school, community, or other major life activities. Because of these differences, we use the term “children with severe mental illness” throughout this report. 2 Child welfare systems are designed to protect children who have been abused or neglected by, for example, placing children in foster care or providing family preservation services; and juvenile justice systems are designed to rehabilitate children who have committed criminal or delinquent acts and to prevent such acts from occurring. Consequently, the goals of these systems and the background and training of their staff reflect these purposes. In addition, parents cannot voluntarily place their children in the juvenile justice system—children are detained in this system as a result of their delinquent acts or status offenses—that is, according to the Department of Justice (DOJ), behaviors that are law violations only if committed by juveniles. However, parents sometimes request that police arrest their children for delinquent behaviors or status offenses that are related to or stem from their mental illness when they cannot obtain services through other means. In this report, we use the term “placed” to refer both to children who have been voluntarily placed in the child welfare system and children who enter the juvenile justice system to receive mental health services. Because information was not available, we were not able to report on whether parents relinquished custody of their children to obtain the services. Page 1 GAO-03-397 Children Placed to Obtain Mental Health Services such as psychiatric and family support services that are not readily accessible in their communities. Various federal laws require that state and local agencies provide services to disabled children, including children with a mental illness, in the least restrictive setting appropriate to their needs; that is, children have a right to receive services in their communities unless their needs can only be met by the state in residential or institutional placements. Several federal agencies have various responsibilities for children with mental health needs. For example, HHS’s SAMHSA provides funds and guidance to help states and localities address the needs of children with mental illness. HHS’s Centers for Medicare & Medicaid Services (CMS) administers both the Medicaid Program and the State Children’s Health Insurance Program (SCHIP). These programs provide funds to states for public health insurance programs, which can cover mental health services, for the approximately 26.5 million enrolled children who are members of low-income families and certain children with disabilities. Similarly, the Department of Education’s (Education) Office of Special Education and Rehabilitative Services (OSERS) provides funding and technical assistance to help states provide needed services, including mental health services, to disabled children with special education needs. Title IV-E of the Social Security Act provides reimbursement for foster care maintenance payments to states, which is available when child welfare agencies place eligible children in approved out-of-home settings, including some , residential treatment facilities.3 4 In many cases, these costs are high; residential treatment facilities can cost over $250,000 a year for one child. Federal law does not require parents to relinquish their parental rights to place their children with child welfare agencies. However, after children have been in care for a specific period of time, the law requires the court to review the child’s status and determine the best interest of the child— which, in some cases, may include termination of parental rights. 3 In commenting on a draft of this report, HHS said that federal reimbursement is only available for children placed by a juvenile justice agency when that agency has an agreement with a child welfare agency under Title IV-E. HHS also said that many facilities that treat children with serious mental health issues are not considered within the scope of foster care and the Title IV-E program. Some states have developed procedures for using Title IV-E funding for the residential placement of children with mental health needs by arranging for courts to make similar findings in these cases as are required for the placement of children removed for safety reasons in situations of abuse and neglect. 4 A residential treatment facility is an inpatient facility, other than a hospital, that provides psychiatric services to individuals under age 21. Page 2 GAO-03-397 Children Placed to Obtain Mental Health Services State laws addressing the ability of parents to place their children in child welfare systems vary across states. Nationwide, laws in 11 states allow parents to place children in child welfare systems on a voluntary basis in order to access mental health services for as long as necessary without relinquishing custody of the child to the state.5 Child welfare directors in 6 other states and the District of Columbia advised us that their states do not allow parents to place child voluntarily in child welfare agencies to access such services.6 Laws in the remaining states are generally silent regarding voluntary placements for mental health. (See app. II for a description of state placement statutes.) You asked us to determine: (1) the numbers and characteristics of children voluntarily placed in the child welfare and juvenile justice systems in order to receive mental health services, (2) the factors that influence such placements, and (3) promising state and local practices that may reduce the need for some child welfare and juvenile justice placements. To address your questions, we surveyed state child welfare directors in all states and the District of Columbia and juvenile justice officials in 33 counties in the 17 states with the largest populations of children under age 18. We surveyed juvenile justice officials at the county level, rather than at the state level, because of the decentralized nature of the juvenile justice system. In addition, we researched state laws and regulations regarding voluntary placement and relinquishment of parental rights, and interviewed officials of child-serving agencies,7 caseworkers, and parents in 6 states (Arkansas, California, Kansas, Maryland, Minnesota, and New Jersey) and judges in 5 states. We chose these states because they represented diversity in geographical location, legal requirements concerning children’s placement, use of Medicaid waivers and optional 5 The 11 states are: Alaska, Colorado, Connecticut, Iowa, Maine, Minnesota, North Dakota, Oregon, Rhode Island, Wisconsin, and Vermont. 6 The 6 states are Florida, Hawaii, Missouri, Montana, New Hampshire, and Texas, based on information received in response to our survey concerning placements in fiscal year 2001. However, New Hampshire indicated that the state introduced voluntary services in state fiscal year 2002 and that it anticipates that some parents will seek placement for their children. 7 Child-serving agencies include mental health, Medicaid and SCHIP, juvenile justice, education, and child welfare. Page 3 GAO-03-397 Children Placed to Obtain Mental Health Services services,8 and the role of state and county agencies in administering child welfare and juvenile justice programs. Also, we observed programs that state officials identified as model programs in those 6 states and interviewed key federal officials and national experts. A more detailed discussion of our scope and methodology appears in appendix I. We conducted our work between March 2002 and February 2003 in accordance with generally accepted government auditing standards. State child welfare officials in 19 states and county juvenile justice Results in Brief officials in 30 counties who responded to our surveys estimated that in fiscal year 2001 parents in their jurisdictions placed over 12,700 children— mostly adolescent males—into the child welfare or juvenile justice systems so that these children could receive mental health services. However, this estimate understates the prevalence of these children for two reasons. First, 32 state officials, including officials of 5 states with the largest populations of children, did not provide us with data. However, officials in 11 of those states indicated that although they could not provide an estimate, such placements occurred in their state. Also, we surveyed juvenile justice officials in only 33 counties, 30 of which responded with an estimate. Moreover, no formal or comprehensive federal or state tracking of such placements occurs. According to the officials we interviewed, many of these children exhibited behavior that threatened their safety and the safety of others. In addition, these officials said children who were placed came from families of all financial levels and that the seriousness of the child’s illness strained the family’s ability to function. For example, some parents found they were not able to meet the needs of other children in the family or fulfill job-related responsibilities. 8 Medicaid is a federal-state health financing program for certain low-income individuals established by Title XIX of the Social Security Act; under Medicaid, states must meet minimum federal rules of coverage in order to receive federal matching dollars. People eligible for Medicaid can generally be divided into three categories: (1) the mandatory categorically needy, (2) the optional categorically needy, and (3) the medically needy. States have several methods by which they can customize their Medicaid program to meet the needs of these enrollees. States can choose to cover certain optional services, such as prescription drugs, or certain optional populations; for example, several states have expanded eligibility for Medicaid to certain groups of children who would not otherwise qualify for the program because their families’ incomes are too high. A limited number of states can also request that HHS waive certain statutory requirements for a specified period of time. Page 4 GAO-03-397 Children Placed to Obtain Mental Health Services A variety of factors influenced whether parents placed their children in the child welfare and juvenile justice systems to receive mental health services for them. Some parents we spoke to in all 6 states reported these factors often created delays or prevented them from obtaining the mental health services that their children needed. According to child welfare, child mental health, and juvenile justice officials, a number of parents placed children in the child welfare and juvenile justice systems because their health insurance had limitations, such as restrictions on mental health services. These same officials said some mental health services, such as child psychiatric and residential services, were in short supply. In all the states we visited, some parents who could not afford or access needed mental health services said they sought help from mental health agencies and schools but reported these agencies had limited resources. Parents seeking placements for children in residential treatment facilities faced further challenges. Mental health and education officials in the 6 states we visited did not support residential placement for children except in extraordinary situations because federal law requires that mental health officials provide services for children in the least restrictive setting as possible and requires education officials to educate children with disabilities with children who are not disabled to the maximum extent possible. These officials believed providing services in a community-based program is a better option for children and families than providing services in residential treatment facilities. In addition, some parents in all 6 states said gaps in services occurred because child-serving agencies have different eligibility requirements for programs and this made it difficult for them to access the child mental health and family support services they needed from various agencies. For example, children who were eligible for psychological services under Medicaid could lose these services if their families’ income increases beyond eligibility thresholds. Finally, state and local officials’ views of the roles of their own agency and other agencies, such as mental health, child welfare, education, and juvenile justice, showed that they misunderstood those roles and, therefore, could not effectively give parents complete and accurate information about available services their agency and other agencies could provide. Federal officials, experts, and service providers agreed that agencies must work together to meet the needs of children. Although federal officials work together on various advisory and information-sharing committees, co-sponsor programs designed to help children with a mental illness, and disseminate much guidance regarding their policies and programs, some state and local officials with responsibilities for children with a mental illness did not understand the program requirements and capacities of their agencies and other child-serving agencies. Page 5 GAO-03-397 Children Placed to Obtain Mental Health Services Officials in all 6 states that we visited identified a range of practices in their states that they believe may help reduce the need for some child welfare and juvenile justice placements. Overall, these practices are consistent with those suggested by federal agencies and child mental health experts, and most parents we spoke with who had children in these programs found these practices helpful. However, the effectiveness of the practices is generally unknown because many were new and few were rigorously evaluated. In addition, many of these practices served a small number of children or only served children in specific locations. To fund mental health services, some state and county officials developed practices that increased the use of less expensive services and providers and distributed mental health costs among several agencies so no single agency paid the entire cost of a child’s care. For example, a program in Minnesota used experienced, masters-level staff to supervise less experienced, bachelor-level staff instead of using the more costly master’s level workers as the primary service provider. States and counties identified several practices that may improve access to mental health services, such as providing a variety of services for children in a convenient public facility and creating a single entity with responsibility for meeting children’s mental health needs. For example, a service provider in Kansas operated a facility that housed a variety of county child welfare, juvenile justice, and education service providers as well as county child mental health providers. States and counties also identified several practices that may improve the treatment of children with a mental illness, such as expanding the array of available mental health services for children and addressing the needs of the family to help the family maintain children with a mental illness at home. For example, in one city in Kansas, caseworkers from one mental health center worked with families of children with severe mental illness to identify community supports and services, such as mentors and after-school programs, which support the entire family. To determine the extent to which children may be placed inappropriately in the child welfare and juvenile justice systems in order to obtain mental health services, we are recommending that the Secretary of HHS and the Attorney General investigate the feasibility of tracking these children to identify the extent and outcomes of these placements. To help reduce misunderstandings at the state and local level, we also recommend that the Secretaries of HHS and Education and the Attorney General develop an interagency working group to identify the causes of these misunderstandings and create an action plan to address those causes. We further recommend that these agencies continue to encourage states to evaluate the child mental health programs that the states fund or initiate Page 6 GAO-03-397 Children Placed to Obtain Mental Health Services and that the Secretaries of HHS and Education and the Attorney General determine the most effective means of disseminating the results of these and other available studies to state and local entities. In commenting on a draft of this report, Education, HHS, and DOJ generally agreed with our findings but did not fully concur with the recommendations. Education said that it did not understand how tracking the children discussed in this report will increase the likelihood of progressive practices to provide children’s mental health services and noted that no recommendations were made for increased grant spending to duplicate or disseminate the positive features of such practices. HHS said that asking the agencies to track this population of children in foster care does not address the larger point of the lack of mental health resources for families and communities and does not address the problems of the children or their parents. DOJ agreed that tracking should occur, but only in the short term, and said that HHS should take the lead in this activity. All three agencies said they would participate in any interagency working group that might be established based on our recommendation and DOJ suggested an existing group as the forum. HHS, however, said that such a group would do little to address the lack of resources. Education also said we should be more specific on the role of the interagency working group and added that such a group would not have the power to address congressional lawmaking. As defined by the President’s New Freedom Commission on Mental Background Health, the mental health system in the United States collectively refers to the full array of private and public programs for individuals with mental illness that deliver or pay for treatment and services. The federal government plays a major role in funding mental health services through public insurance—Medicaid and SCHIP—and grants to states and local agencies, and state and local governments play a major role in delivering services. Most families depend on private and public insurance to pay for mental health services because such services are expensive; although, as we discussed in a previous report, children may face certain limitations depending on their type of coverage and where they lived.9 At the federal level, several federal agencies—including HHS’s SAMHSA, CMS, and the Administration for Children and Families (ACF); DOJ’s 9 U.S. General Accounting Office, Mental Health Services: Effectiveness of Insurance Coverage and Federal Programs for Children Who Have Experienced Trauma Largely Unknown, GAO-02-813 (Washington, D.C.: Aug. 22, 2002). Page 7 GAO-03-397 Children Placed to Obtain Mental Health Services Office of Juvenile Justice and Delinquency Prevention (OJJDP); and Education’s OSERS—have a role in addressing the mental health needs of children. However, all have individual mandates, target different but often overlapping populations, and share responsibilities to varying degrees with state and county agencies. (See table 1.) Table 1: Characteristics of Key Agencies with Responsibilities for Children with a Mental Illness Department and Key activities related to Authorizing Population targeted and agency children’s mental health Statute definition of mental illness HHS (CMS) Administers the Medicaid and SCHIP programs that Title XIX of the Certain low-income individuals provide health insurance coverage, including some Social Security and certain disabled individuals. coverage for severe mental illness. Act Awards research grants. Uses a clinical classification of Provides technical assistance to state agencies. diseases to identify children with a mental illness. HHS (ACF) Oversees the Adoption and Safe Families Act of 1997 Title IV, Part E of Children and families. (ASFA) that improves the safety of children and the Social promotes adoption and permanent homes for children Security Act Uses a clinical classification to who need them and supports families. identify children with a mental Administers Title IV-B of the Social Security Act that ASFA illness and accepts provides funds to states for services that protect the classifications used by welfare of children. For example, these services individual states in identifying address problems that may result in the abuse and children with mental health neglect of children. The funds may also be used to needs. provide services to families of children with a mental illness. Administers the Title IV-E Foster Care Funds Program that provides funds to states to partially cover the costs of room and board for eligible children from low-income families who are placed in approved out-of-home living arrangements. Maintains the Adoption and Foster Care Analysis and Reporting System (AFCARS), to which states report demographic data on children in foster care, including diagnoses of mental illness. Awards development, training, research, and demonstration grants. Disseminates research. Provides technical assistance. Page 8 GAO-03-397 Children Placed to Obtain Mental Health Services Department and Key activities related to Authorizing Population targeted and agency children’s mental health Statute definition of mental illness Education Monitors the implementation of the Individuals with IDEA Promotes improvement in (OSERS) Disabilities Education Act (IDEA). IDEA established the educational results for infants, right of disabled children—including children with toddlers, and children with mental illness—to receive special education and disabilities. related services, such as mental health services, designed to meet their unique needs and prepare them Under IDEA, the term “child for employment and independent living when such with a disability” means a child, services are needed for children to make adequate who by reason of a physical or progress in school. IDEA requires schools to evaluate mental disability, needs special children who are referred for special education services education and related services. and, if services are required, develop an individualized education program (IEP) that documents the type and intensity of services that will be provided. Funds formula and discretionary grants. Provides technical assistance. Disseminates research. HHS (SAMHSA) Provides funds to states and local entities to help them Public Health Individuals with substance administer, support, or establish programs that Service Act abuse problems, mental illness specifically target the mental health needs of children or at risk of substance abuse and provides block grant funding that enables the and mental illness. states to maintain and enhance mental health services. Sponsors the Systems of Care Initiative to help Children served meet the children and adolescents with severe mental illnesses following criteria: and their families receive a variety of services from • age 0 to 18 and schools, community mental health centers, and social • have a diagnosed mental, services organizations and facilitate coordination behavioral, or emotional among these service providers. disorder of sufficient duration Awards formula and discretionary development and to meet diagnostic criteria demonstration grants. that results in impairment Disseminates research. that substantially interferes Provides technical assistance. with or limits the child’s functioning in family, school, or community activities. DOJ (OJJDP) Helps oversee juvenile justice programs across the Juvenile Justice Children who commit crimes or nation and supports states and local communities in and Delinquency are delinquent and children at their efforts to develop and implement effective and Prevention Act risk for delinquency. coordinated prevention and intervention programs. Helps improve the juvenile justice system’s ability to Accepts mental illness protect public safety, hold offenders accountable, and classifications used by states to provide mental health treatment and rehabilitative identify children with mental services. health needs. Funds formula and discretionary grants. Provides technical assistance. Disseminates research. Source: GAO. Note: Other agencies, such as HHS’s Social Security Administration, Department of DOJ’s Division of Civil Rights, and HHS’s and Education’s Office of Civil Rights, also have responsibilities for children with disabilities, including children with a mental illness. Page 9 GAO-03-397 Children Placed to Obtain Mental Health Services Federal agencies with responsibilities for children with mental illness support interagency collaboration at the federal and local level. For example, officials at SAMHSA are collaborating with Safe and Drug Free Schools officials at Education and OJJDP to improve mental health services for children with emotional and behavioral disorders who are at risk of violent behavior by developing and implementing a large grant program that targets these children. This program awarded grants—about $53.2 million in fiscal year 2001—to some local school districts that formed partnerships with local mental health and law enforcement agencies to provide comprehensive planning and services for children with emotional and behavioral disorders. In addition, ACF, Education, SAMHSA, and a private foundation are jointly administering a program that assesses the collaborative processes being used to provide multiagency services to very young children affected by mental illness and substance abuse. At the state and county level, a similar array of agencies provides or funds services for children with a mental illness, and state and federal laws and policies often determine their roles and responsibilities. In addition, federal agencies play an important role in funding research and evaluation studies and disseminating the findings of these efforts. For example, SAMSHA, OJJDP, and OSERS fund research and evaluation studies that target children with mental illness and disseminate the findings of these efforts, descriptions of promising practices, and other information through their clearinghouses, journals, and Web sites. Despite their differences, programs run by agencies at all levels of government generally adhere to the principle of the “least restrictive environment.”10 This principle assumes that children, like adults, have liberty interests that include the right to live in a family situation. Under this principal, the state has the burden of demonstrating that state-funded out-of-home placements are necessary for the protection of the child or society. In 1999, the Supreme Court established this principle as a right for disabled children. In Olmstead v. L.C., the Court held that, under Title II of the Americans with Disabilities Act, states may be required to serve people with disabilities in community settings when such placements can be reasonably accommodated. Mental health treatment can be very expensive and most families rely upon insurance to help cover the cost of these services. For example, one 10 IDEA requires that, to the maximum extent possible, children with disabilities are to be educated with children who are not disabled, based on the needs of the child. Page 10 GAO-03-397 Children Placed to Obtain Mental Health Services outpatient therapy session can cost more than $100, and residential treatment facilities, which provide 24 hours of care, 7 days a week, can cost $250,000 a year or more. Nationwide, 88 percent of American children are covered by private or public health insurance plans. Private plans, such as employer-sponsored or individually purchased plans, provide health insurance coverage to about 68 percent of American children, and public programs, such as Medicaid and SCHIP, provide health insurance coverage to about 19 percent.11 Most private health insurance plans offer different coverage for mental health services than for physical health services. To ensure more comparable coverage, the federal government passed the federal Mental Health Parity Act (MHPA) of 1996. MHPA prohibited certain employer- sponsored group plans from imposing annual or lifetime restrictions on mental health benefits that are lower than those imposed on other benefits. However, the act did not eliminate other restrictions and limitations on mental health coverage, such as limiting the number of treatments per year that are reimbursable. In addition, the law does not apply to plans sponsored by employers with 50 or fewer employees, group plans that experience an increase in plan claims costs of at least 1 percent because of compliance, and coverage sold in the individual market. According to the National Council of State Legislatures, as of November 2001, 46 states have passed mental heath parity bills. Most of these laws meet or exceed the federal MHPA standard. However, the Employee Retirement Income Security Act (ERISA) of 1974 preempts states from directly regulating self-funded, employer-sponsored health plans; under such circumstances, state requirements usually do not apply. For more than 30 years, Medicaid has provided comprehensive health coverage for children from low-income families. Although individual states determine many coverage, eligibility, and administrative details, the federal government has established certain requirements for state Medicaid programs. These requirements include providing preventive screening and necessary treatment of any detected health condition for children. Under Medicaid, a state may apply for waivers from the federal government, which exempt the state from certain provisions of the Medicaid statute in order to operate a specific program, change the benefits offered under Medicaid, or make comprehensive changes to their 11 U.S. General Accounting Office, Health Insurance: States’ Protections and Programs Benefit Some Unemployed Individuals, GAO-03-191 (Washington, D.C.: Oct. 25, 2002). Page 11 GAO-03-397 Children Placed to Obtain Mental Health Services Medicaid or SCHIP programs. For example, states can use the Home and Community-Based Services (HCBS) (section 1915(c) of the Social Security Act) waiver to provide home and community-based long-term care services to targeted groups of individuals who would otherwise require care in a hospital, skilled nursing facility, or intermediate care facility. To receive the HCBS waiver, states must demonstrate that the cost of the services to be provided under the waiver is no more than the cost of institutionalized care plus any other Medicaid services provided to institutionalized individuals. Additional flexibility is available to states under the “Katie Beckett” option, which enables states to use federal Medicaid funds more flexibly to cover the costs of health care services in the home and community rather than just in institutional settings, regardless of the income and assets of the family.12 States choosing this option provide Medicaid coverage for children under age 19 who meet certain standards for disability, would be eligible for Medicaid if they were in an institution, and are receiving medical care at home that would be provided in an institution. Although family income and resources are not considered in determining eligibility for services under the Katie Beckett option, states can require families to contribute to the cost of the program. The Rehabilitation option allows states to provide optional Medicaid services such as psychiatric rehabilitation and other diagnostic, screening, and preventive services. Under this option, children can obtain services in nonmedical settings, including school-based or other day treatment and home-based services. States can expand public health insurance for uninsured children from low-income families by implementing SCHIP programs. States have three options in designing SCHIP programs. They may (1) expand Medicaid programs to include children from low-income families with earnings too high to qualify for Medicaid, (2) develop a separate child health insurance program with benefits that differ from those offered under Medicaid, or (3) provide a combination of both. Twenty-four states are implementing SCHIP by expanding Medicaid. Fourteen states are enrolling children into separate non-Medicaid plans. Other states use a combination of Medicaid and non-Medicaid plans to serve children in families at different income levels. If a state elects to implement SCHIP by expanding Medicaid, it must 12 This waiver authority for seriously ill children was inspired by the case of a ventilator dependent child, Katie Beckett. Katie’s mother successfully argued that the nursing services her daughter required could be provided in her home and at a cost less than that of providing the same care in a hospital. What resulted was the so-called “Katie Beckett Waiver,” enacted as part of the Tax Equity and Fiscal Responsibility Act (TEFRA) of 1982. Page 12 GAO-03-397 Children Placed to Obtain Mental Health Services offer the same benefit package to SCHIP beneficiaries as it does to Medicaid beneficiaries. In addition, states operating SCHIP Medicaid-expansion or Medicaid- combination programs must also screen children for various conditions so that health problems can be found early and treated before they worsen. This Medicaid requirement for Early and Periodic Screening, Diagnostic and Treatment services (EPSDT) requires states to provide children and adolescents under age 21 with access to comprehensive, periodic evaluations of health, developmental and nutritional status, as well as vision, hearing, and dental needs. States must provide all services needed for conditions discovered through routine pediatric screenings regardless of whether the service is covered for other beneficiaries by the state Medicaid plan. In 2000, more than 1 million children were enrolled in SCHIP Medicaid expansion programs and were, therefore, eligible for EPSDT screens. Certain disabled children, including children with a mental illness, may qualify for monthly Supplemental Security Income (SSI) if they and their families have little or no income and resources and they meet SSI’s definition of disability. To meet SSI’s definition, a child must have a physical or mental condition or conditions that can be medically proven, and which result in marked and severe functional limitations; the condition or conditions must last or be expected to last at least 12 months or be expected to result in death; and the child may not work at a job that is considered substantial work. The monthly SSI depends generally on where the child lives and his or her parents’ assets. However, the monthly SSI payment for children living in certain institutions throughout a month, where private health insurance paid for their care or when Medicaid paid more than half of the cost of their care, is currently capped at $30.13 13 Not all severely limited children with a mental illness who meet SSI’s income requirements are eligible for SSI payments because of SSI’s strict definition of disability. Federal SSI payments for disabled children range from $1 to $545 and some states supplement these payments. Although most children who receive SSI payments are eligible for Medicaid, some are not. Page 13 GAO-03-397 Children Placed to Obtain Mental Health Services State child welfare and county juvenile justice officials estimated that While No Formal parents in their jurisdictions placed over 12,700 children in fiscal year Tracking Occurs, 2001, generally adolescent males, to child welfare and juvenile justice agencies so that the children could receive mental health services. Available Estimates Nationwide, the number is likely higher because officials in 32 states, Indicate That Many including the 5 states with the largest populations of children, did not provide us with estimates. Additionally, officials in 11 states that could not Children Were Placed provide estimates indicated that such placements occurred in their state. with the State— Moreover, we surveyed juvenile justice officials in only 33 counties, with Primarily Adolescent 30 providing estimates. Only estimates were available because no federal or state agency tracked children placed to obtain mental health services in Males—to Access a formal or comprehensive manner. Officials in the 6 states we visited Mental Health reported that placed children came from families of all financial levels and said that the seriousness of the children’s illnesses strained families’ Services abilities to function. For example, some parents are not able to meet the needs of children in the home and some found that they were less able to meet work demands. Some Officials Estimate The state child welfare officials and county juvenile justice officials who That Parents Placed Over responded to our surveys estimated that over 12,700 children entered the 12,700 Children to Access child welfare or juvenile justice systems in order to receive mental health services in fiscal year 2001. Of these children, about 3,700 entered the Mental Health Services child welfare system. State child welfare officials reported estimates that ranged from 0 to 1,071 children, with a median of 71. Table 2 provides detailed information about the number of children placed in the child welfare system.14 Approximately 9,000 children entered the juvenile justice system. County juvenile justice officials reported estimates that ranged from 0 to 1,750, with a median of 140. Table 3 provides details on the estimated number of children placed in the juvenile justice system. 14 Nineteen states provided estimates. Eleven states could not provide the data requested, 6 states and the District of Columbia said the practice was either not legal in their states or that the state generally did not allow parents to place their children solvely to receive mental health services, and 10 states could not provide the data requested but indicated that voluntary placement happens. Four states did not respond to the survey. Page 14 GAO-03-397 Children Placed to Obtain Mental Health Services Table 2: States’ Estimated Number of Children Placed in the Child Welfare System to Obtain Mental Health Services in Fiscal Year 2001 State Number of children placed a Alaska Alabama 130 d Arkansas d Arizona b California b Colorado Connecticut 738 c District of Columbia Delaware 0 c Florida b Georgia c Hawaii d Iowa Idaho 123 a Illinois Indiana 0 b Kansas Kentucky 14 a Louisiana b Massachusetts Maryland 54 d Maine b Michigan Minnesota 1,071 c Missouri Mississippi 13 c Montana North Carolina 440 d North Dakota b Nebraska c New Hampshire b New Jersey b New Mexico Nevada 20 b New York d Ohio Oklahoma 3 Oregon 101 Pennsylvania 71 Rhode Island 279 a South Carolina Page 15 GAO-03-397 Children Placed to Obtain Mental Health Services State Number of children placed d South Dakota d Tennessee c Texas d Utah d Virginia Vermont 60 Washington 423 b Wisconsin West Virginia 135 Wyoming 5 Total 3,680 Source: GAO survey. a State did not respond to our survey. b State could not provide the data requested. c The practice of voluntary placement or relinquishment is either not legal in the state or the state generally does not allow parents to place their children solely to receive mental health services. d State could not provide the data requested, but indicated that voluntary placement happens. Page 16 GAO-03-397 Children Placed to Obtain Mental Health Services Table 3: Estimated Number of Children Placed in the Juvenile Justice System in 33 Counties to Obtain Mental Health Services in Fiscal Year 2001 Number of State County children placed Arizona Maricopa 60 Arizona Pima 1,750 a California Los Angeles California San Diego 200 Colorado El Paso 40 Colorado Jefferson 100 Florida Broward 0 Florida Miami-Dade 999 Georgia Fulton 172 Georgia Gwinnett 100 Illinois Cook 0 Illinois DuPage 35 Indiana Lake 600 Indiana Marion 100 Louisiana Jefferson Parish 50 Michigan Oakland 160 Michigan Wayne 400 a New Jersey Bergen New Jersey Middlesex 999 New York Brooklyn 74 New York Queens 49 a Ohio Cuyahoga Ohio Franklin 363 Pennsylvania Montgomery 20 Pennsylvania Philadelphia 500 Texas Dallas 200 Texas Harris 200 Virginia Fairfax 350 Virginia Prince William 840 Washington King 575 Washington Pierce 0 Wisconsin Dane 120 Wisconsin Milwaukee 0 Total 9,056 Source: GAO survey. a County was unable to estimate the number of children. Nationwide, the number of children placed is likely to be higher. Eleven states reported that they could not provide us with an estimate even though they were aware that such placements occurred. Moreover, Page 17 GAO-03-397 Children Placed to Obtain Mental Health Services officials in 9 additional states that responded to our survey did not provide an estimate and did not mention whether or not parents turned to the child welfare system to access mental health services. However, child welfare workers we interviewed in 2 of these 9 states—California and New Jersey—confirmed that these placements did in fact occur. Although some of the state child welfare officials that we visited in California said children do not enter that system to obtain mental health services, county child welfare workers said that they knew of such placements and explained how the cases were coded in their system. Four states did not respond to the survey.15 Information on the prevalence of children present in the juvenile justice system is also limited in this report since we surveyed only 33 counties. In 3 of those counties, juvenile justice officials reported that while they were not able to provide estimates, they knew that children were entering the system to obtain mental health services because they were not able to access such services in other ways. Federal and state systems that track children in the juvenile justice and child welfare systems do not track in a formal or comprehensive way children placed to receive mental health services. For example, ACF’s AFCARS, which contains data reported by states about children in foster care or adopted out of foster care, does not have a data element that identifies this population. Similarly, every 2 years OJJDP conducts the Census of Juveniles in Residential Placement, which gathers information on children in juvenile residential facilities and their characteristics but no database variable exists to isolate children whose parents sought the help of the juvenile justice system to meet children’s mental health needs from other children in the juvenile justice system who may also have mental health problems. OSERS maintains extensive data about children who receive special education services, but data are aggregated at the state level and do not include information about who has custody of the child. Officials Said Placed According to our survey of state child welfare directors, placed children Children Were Mostly are more likely to be boys than girls and are more likely to be adolescent. Adolescent Males with Child welfare directors in 19 states reported that, in fiscal year 2001, 65 percent of placed children were male and 67 percent were between the Severe Mental Health ages of 13 and 18. While juvenile justice officials could not provide Problems information about the gender and ages of children placed in their system, 15 These 4 states were Alaska, Illinois, Louisiana, and South Carolina. Page 18 GAO-03-397 Children Placed to Obtain Mental Health Services most children in the juvenile justice population are male and range in age from 13 to 18.16 The officials from state and county child-serving agencies and parents we interviewed in the 6 states that we visited said that children who were placed had severe mental illnesses, sometimes in combination with other disorders, and their parents believed they required intense treatment that could not be provided in their homes. Many of these children were violent and had tried to hurt themselves, their parents, or their siblings and often prevented their parents from meeting the needs of the other children in the family. For example, in Kansas, one parent reported that her three other children refused to remain in the home with her son who has bipolar disorder,17 is very aggressive, and has molested other children in the past. In Maryland, officials from both state and county child-serving agencies told us about a teenage boy who was mentally ill, developmentally disabled, autistic, and hospitalized. Because the boy was both violent and sexually aggressive, the county told his mother that if she brought him home from a stay in the hospital, they would remove her other children from the house. Caring for children who are seriously mentally ill can also prevent parents from obtaining full-time work or cause disruptions in their work lives. For example, an Arkansas parent now raising her grandchild does not work because of the time necessary to care for her mentally ill granddaughter. State and county officials from child-serving agencies in 5 of the 6 states that we visited told us that finding placements for children who were mentally ill and who also had other developmental disabilities was particularly difficult. One such child in Maryland was rejected by facilities that serve the developmentally disabled because he was mentally ill and rejected by facilities that serve the mentally ill because he was developmentally disabled. Moreover, parents and officials in 4 of the 6 states that we visited also told us of youth who were not only mentally ill, but who also abused illegal drugs and alcohol as a way to self-medicate their mental illnesses. Children who are placed or are at risk of placement come from families that span a variety of economic levels. Officials from state and county 16 In commenting on a draft of this report, DOJ said that, in the absence of formal tracking and official data, describing with any certainty the characteristics of youth placed voluntarily by their parents in the juvenile justice system is impossible. 17 Bipolar disorder is characterized by the occurrence of one or more major depressive episodes accompanied by at least one manic episode over a brief time interval. Page 19 GAO-03-397 Children Placed to Obtain Mental Health Services child-serving agencies in all 6 states that we visited reported that families of all economic levels have placed children or are at risk of doing so. Officials in child-serving agencies in all of the 6 states that we visited said children from middle class families are more likely to be placed because they are not eligible for Medicaid and their families do not have the funds to pay for treatments not covered by insurance. Multiple factors influence parents’ decisions to place their children in the Multiple Factors child welfare and juvenile justice systems so that they can obtain mental Influence Decisions to health services for them. Private health insurance plans often have gaps and limitations in the mental health coverage they provide—for example, Place Children some may not cover certain mental illnesses and others may limit the amount and type of services that are covered—and not all children covered by Medicaid received needed services. Even when parents could afford mental health services, some could not access services—such as child psychiatric services—at times when they needed those services because of an inadequate supply of such services. In other instances, some mental health agencies and schools have limited resources to provide mental health services and are required to serve children in the least restrictive environment possible or to educate eligible disabled children with children who are not disabled to the maximum extent possible, respectively—which can limit the alternatives available to parents whose children need residential placements. In other instances, parents sometimes have difficulty obtaining all needed services for their children in their communities because eligibility requirements for services provided by various agencies differ. Furthermore, some officials and service providers have misunderstood the role of their own and other agencies and, therefore, gave parents inaccurate or incomplete information about available services for families. These misunderstandings created gaps in services for some children. Limitations in Private and Almost all state child welfare directors and county juvenile justice officials Public Insurance Often who responded to our surveys reported that private health insurance Restrict Access to Mental limitations were increasing the number of child welfare and juvenile justice placements to obtain mental health services, and well over half Health Care, and Some reported Medicaid rules also increased such placements. For example, Services are Limited according to parents and state and local officials in all 6 states that we visited, many private insurance plans and separate SCHIP plans offered Page 20 GAO-03-397 Children Placed to Obtain Mental Health Services limited coverage for traditional or clinical treatments, such as psychotherapy or psychiatric consultations,18 and did not cover residential treatment placements. In addition, state officials in 3 of the 6 states we visited said that Medicaid rules in some states that require the preauthorization of services could result in delays and denials of community-based services. The legislatures in the 6 states that we visited passed health insurance parity laws to increase the coverage that was available for mental health services by requiring insurance companies to provide mental health coverage that was comparable to what they offered for physical health care. Although these laws met or exceeded the standard established by the federal MHPA, they did not require private plans to cover intensive, long term, and nontraditional services such as respite care and wrap-around services,19 although mental health officials and service providers in the states that we visited said these services were often necessary to help families maintain their severely children with a mental illness in their homes. Furthermore, federal law20 preempts states from directly regulating self-funded, employer-sponsored health insurance plans and in doing so exempted many families from the enhanced benefits and protections found in state parity laws. Table 4 shows the key features of these laws. 18 These services are generally provided by licensed or certified psychiatrists, psychologists, or master’s level social workers. 19 Respite care refers to the supervision of mentally ill or other disabled children by a trained caretaker for brief periods of time in order to provide parents relief from the strain of caring for a child with serious mental illness. Wrap-around services encompass a variety of community supports, including counseling, mentoring, tutoring, and economic services that are designed to meet the individual needs of children and their families. 20 See ERISA, 29 U.S.C. sections 1001-1461. Page 21 GAO-03-397 Children Placed to Obtain Mental Health Services Table 4: Key Features of Health Insurance Parity Laws in 6 States Meets Exceeds State Major provisions FMPHA FMHPA Arkansas • Does not apply to state employees and companies with less than 50 workers. ✓ • Exempts any group health plan whose costs increase 1 percent or more due to the act’s application. • Does not apply to health insurance plans if the act’s application to these plans will result in an increase in the cost of the health plan of at least 1.5 percent. California • Applies generally to all employers, regardless of size. ✓ • Applies to all health plans that provide benefits. • Coverage is limited to 20 outpatient visits and 30 days of inpatient care for mental illnesses that do not meet the state’s SED criteria. • Covers severely emotionally disturbed children with certain categories of mental illness. Kansas • Applies to health insurance plans that provide mental health benefits. ✓ • Plans must provide coverage for psychotherapeutic drugs used for the treatment of mental health under conditions no less favorable than for other drugs. • Coverage is limited to 45 outpatient visits and 45 days of inpatient care. Maryland • Applies to all health insurance policies that provide coverage on an expense-incurred ✓ basis. • Includes drug and alcohol disorders. • Co-payments and deductibles must be equal to those for other conditions. • Outpatient coverage schedule provides for 80 percent coverage for the first five visits in a 12-month period, 65 percent for the 6–30th visits, and 50 percent for the 31st and subsequent visits. Minnesota • Applies to all health plans that provide mental health benefits. ✓ • Applies to all health plans that provide benefits except self-insured health insurance plans. • Plans with 100 subscribers or more can limit mental health coverage to 80 percent of the customary charge for the first 10 hours of treatment over a 12-month period and 75 percent for additional treatment over the same 12-month period. New Jersey • Every individual health insurance policy must provide coverage for biologically based ✓ mental illness. • Covers biologically based mental illness under the same terms as other sicknesses. Source: GAO analysis. In the 6 states that we visited, state and local mental health officials agreed that Medicaid had far fewer restrictions and limitations than private health insurance plans. In addition, mental health officials in Arkansas, California, and Maryland told us that differences between private insurance and Medicaid programs had created two distinct systems of child mental health services. Under these systems, children covered by Medicaid had greater coverage for mental health services than children covered by private insurance. All 6 of the states that we visited covered optional Medicaid and SCHIP services by expanding their programs for children with mental illness who were ineligible for Medicaid on the basis of their families’ income. These included the HCBS waivers, Katie Beckett option, Rehabilitation option, Page 22 GAO-03-397 Children Placed to Obtain Mental Health Services and SCHIP programs. See table 5 for Medicaid and SCHIP programs used in the states that we visited. Table 5: Key Medicaid and SCHIP Programs for Children with Mental Illness in 6 States Waivers Types of optional services Types of SCHIP programs Combination Home and Separate (Medicaid Community- Medicaid (non-Medicaid) expansion and a State Based Services Katie Beckett Rehabilitation expansion program separate) program Arkansas X X X California X X X Kansas X X X Maryland X X X X Minnesota X X X X New Jersey X X Source: GAO analysis. a Of the 4 of the 6 states that we visited that had a HCBS waiver, only Kansas had a waiver specifically for children with serious emotional disturbances. States used different approaches to expand Medicaid coverage. For example, Medicaid officials in Kansas received permission from CMS to implement a HCBS waiver to expand coverage for community-based mental health services for a limited number of children who are chronically mentally ill. Although Medicaid officials in New Jersey financed its new child mental health system through a Medicaid Rehabilitation option, the option extends Medicaid coverage to only a limited number of children who have exhausted benefits under other insurance and who have chronic and severe mental illness. This option provides 60 days of community-based services and limited hospitalization.21 Arkansas, Maryland, and Minnesota used Medicaid’s Katie Beckett option to expand Medicaid coverage to physically or mentally disabled children who meet CMS’s requirements for institutional care. Arkansas’s program did not require parents to share program costs to receive services, but Minnesota’s program required parents to pay according to their ability as defined by a sliding scale. While states chose to use different waivers and options to expand access to mental health services, all 6 states used SCHIP programs to extend 21 In commenting on a draft of this report, Kansas said that services the state provides under the Rehabilitation option are not limited to 60 days, but are based on the individual clinical and medical needs of a child. Page 23 GAO-03-397 Children Placed to Obtain Mental Health Services health insurance coverage to low-income families whose incomes exceeded allowable limits under Medicaid. Kansas offered a separate child health (non-Medicaid) expansion program. Arkansas and Minnesota offered expanded Medicaid coverage and California, Maryland, and New Jersey offered both and Medicaid-expansion and separate child health programs to low-income families of different income levels. However, mental health officials in 3 states said that their separate SCHIP programs generally resemble many private insurance plans in terms of limits and restrictions. For example, New Jersey’s separate SCHIP plan limits some mental health services. California’s plan, however, entitles children who meet the state’s definition of severely emotionally disturbed to receive the same services from county mental health services as children covered by Medicaid. Although Medicaid’s EPSDT provision requires Medicaid coverage for all medically necessary health services that are identified during routine periodic screening as long as the treatment is reimbursable under federal Medicaid guidelines, some state officials said many eligible children are unable to access necessary services through Medicaid because practitioners in the states implement EPSDT unevenly. For example, a Medicaid official in Maryland told us that the implementation of EPSDT varied from county to county. Medicaid officials in California said implementation varied from practitioner to practitioner although access to EPSDT services was increasing as a result of litigation. These officials explained that some practitioners are reluctant to recommend services if such services are not available, some do not have the time to question parents about their child’s mental health, and others are not well informed about children’s mental health issues. In a previous report, we recommended that the Administrator of CMS work with states to develop criteria and time frames for consistently assessing and improving EPSDT reporting and provision of services.22 As we stated in that report, comprehensive national data on the implementation of EPSDT are needed to judge states’ success in implementing EPSDT requirements. Low Medicaid reimbursement rates may restrict mental health providers’ participation in the program and thus further restrict services. In all 6 states, officials from a variety of agencies said Medicaid rates for some services are lower than the usual and customary rates in their areas and, in 22 U.S. General Accounting Office, Medicaid: Stronger Efforts Needed to Ensure Children’s Access to Health Screening Services, GAO-01-749 (Washington, D.C.: July 13, 2001). Page 24 GAO-03-397 Children Placed to Obtain Mental Health Services some areas, psychiatrists and psychotherapists will not accept Medicaid patients or expand the number that they are presently seeing because of low Medicaid reimbursements. For example, a psychologist in Minnesota told us that Medicaid reimbursement for a psychotherapy session is about half the customary rate, and a mental health official in New Jersey said that Medicaid reimburses only $5 per visit for monitoring the use and effects of psychotherapeutic medication. Even when insurance covered the costs of mental health services, some mental health officials and parents indicated parents often could not access services or placements in their community because the supplies of these services were limited. Fifteen of the 28 child welfare officials and 9 of the 23 juvenile justice officials who responded to our survey question on the relationship between community mental health services and voluntary placements indicated that the lack of such services increased voluntary placements. In every site we visited, officials of state and local child-serving agencies and parents reported inadequate supplies of mental health service providers and specialized mental health placements. Many of these officials said that shortages of child psychiatrists, child psychologists, respite care workers, and behavior therapists existed on statewide levels and were worse in rural areas. For example, state and local mental health officials in Arkansas, California, Kansas, Maryland, and Minnesota told us that some rural counties had very limited or no child mental health services. Also, specialized, out-of-home mental health placements, such as psychiatric in-patient services and residential treatment facilities, were often not available or had long waiting lists. For example, Arkansas officials said the state has no state-run psychiatric hospital placements for children under age 12, and, in California, some children have to wait about 8 months for a residential placement. Child welfare, mental health, and juvenile justice officials in California, Maryland, and New Jersey noted that relatively fewer residential placements are available for girls than are available for boys and that few placements would accept children with histories of arson and sexual aggression. Moreover, these officials noted children placed in the child welfare or juvenile justice systems received preference for services, particularly when the services were court-ordered. Page 25 GAO-03-397 Children Placed to Obtain Mental Health Services Difficulties Accessing In the 6 states that we visited, limited resources in mental health agencies Services through Certain and public schools to fund mental health services and agency officials’ Agencies, Difficulties in attempts to minimize the use of residential services posed additional challenges for parents seeking services and placements for their children. Meeting Service Eligibility In addition, some children who needed multiple supports experienced Requirements, and gaps in services because of differences in the eligibility requirements for Misunderstandings among obtaining such services. Moreover, some officials and service providers Officials and Service often misunderstood the responsibilities and resources of their own and Providers Can Influence other agencies and communicated the misunderstandings to parents, Placements compounding service gaps and delays. Difficulties Accessing Services According to some mental health and education officials, budgetary through Mental Health or shortfalls in the 6 states that we visited contributed to agencies’ attempts Education Agencies to cut or control costs, including the cost of mental health services. Mental health agencies used a variety of strategies to control costs, such as reducing spending, requiring that services covered by Medicaid be approved before they are provided, and limiting the number of children served. In each state we visited, some parents believed the strategies affected the quality of the services their children received and created unnecessary delays in getting services. In Arkansas, private, nonprofit mental health providers that contract with the state to provide community mental health said that state officials cut their funding and, as a result, they had to reduce the length of counseling and therapy sessions and increase the length of waiting lists. In 3 of the states that we visited— Arkansas, Maryland, and New Jersey—state officials said that they contracted with private, nonprofit agencies to authorize the medical necessity of mental health services covered by Medicaid. Arkansas required preauthorization of all Medicaid-financed mental health services, including those that were legally required, such as the screening of foster children for mental health services. A variety of officials in this state and a parent reported that the preauthorization agency often denied services for children because they had not benefited from similar services in the past. For example, this parent said the preauthorization agency refused her son’s therapist’s request to hospitalize him to treat his suicidal behavior because past hospitalizations for suicide attempts had not reduced the behavior. In New Jersey, state mental health officials reduced the number of counties that had been targeted to implement the state’s new child mental health system and limited the number of children served by the system. For example, officials from a variety of county agencies reported that the new system of care limited the number of children receiving the highest level of care in their county to 180 a year, although juvenile justice officials said that at least 500 children in their system alone needed such services. Officials from child welfare, mental health, and juvenile justice Page 26 GAO-03-397 Children Placed to Obtain Mental Health Services agencies said eligible children who did not receive the highest level of care were placed on waiting lists and provided less intensive services. Other ways of controlling costs in the states that we visited included limiting placements of children in residential treatment facilities. Mental health officials said community-based services supported the right of children with a mental illness to receive services in the least restrictive setting, were more effective than residential services in helping children and their families, and cost less, thus allowing more children to receive services. To implement the limits and to ensure placements are necessary, states required interagency review boards to approve such placements or reduced the time spent in residential placements. For example, local mental health agency officials in Maryland explained that they could not place children in private residential facilities even if they presented a danger to themselves and others because the state did not allow them to pay for such placements. These officials further explained that private residential placements had to be approved by a county interagency coordinating committee and subsequently reviewed by a state coordinating committee that could return requests for further consideration. A parent in this county said the approval process took 6 months. In New Jersey, child welfare officials said a goal of the new child mental health system is to reduce the average stay at residential treatment facilities from 18 to 6 months, and some parents in Maryland told us that funding limits, rather than the success of the treatment, determine the date children will be discharged from residential treatment. Officials from a variety of county agencies and some parents also reported that public schools in their county—in order to control costs—were often reluctant to provide individualized mental health services for special education children beyond services that are routinely available. For example, child welfare officials in three locations we visited said schools fit children with a mental illness into preexisting programs, and school officials in two of these locations agreed, stating that children’s IEPs could only contain services that were available in the schools. Almost all the parents that we interviewed said that school officials were reluctant to evaluate their children to determine eligibility for special education services or provide specialized services for them. For example, a parent of a child with a mental illness in Kansas said officials in her daughter’s school refused to evaluate the child for a year and a half. After this evaluation, the school recommended that the child work with a learning disability specialist for 30 minutes a week, even though the parent said this service was insufficient and did not address her daughter’s destructive, violent, and aggressive behavior. Page 27 GAO-03-397 Children Placed to Obtain Mental Health Services As a result of the difficulties encountered at both mental health agencies and schools, some parents could not access the community-based services they needed to care for their child at home nor place their child in a residential treatment facility. In 4 of the 6 states that we visited, some teachers and mental health service providers encouraged parents to refuse to bring their child home from a hospital or other supervised placement, such as a detention center, when they were informed their child was being discharged in order to obtain mental services from child welfare agencies. Although these parents realized they were abandoning their child and, as a result, could be arrested and lose custody, they believed that this was the only alternative that remained to obtain services. Some parents that we interviewed told child welfare workers they would physically abuse their child in their presence to force them to place the child in their system if they could not get help for their child any other way, and juvenile justice officials told us other parents asked the police to arrest their children. However, state officials in 2 of the states that we visited said children often remain hospitalized or in a shelter for months without appropriate services because child welfare agencies did not have the resources to provide the needed level of services or specialized placement, could not obtain resources from other agencies, or could not access appropriate services or placements that had the capacity to treat another child. In addition, although federal law does not require custody relinquishment to obtain mental health services, state child welfare officials in 2 states that we visited said that their state required parents to relinquish custody of their child to the state after the voluntary placement period ends. In 1 state, these officials misconstrued federal requirements and believed that they required relinquishment and in the other state, officials said relinquishment enabled them to have more control over the child’s care. Difficulties Meeting Eligibility Eligibility requirements for obtaining mental health services pose several Requirements for Mental challenges for parents. For example, state and local Medicaid officials in Health Services 3 states told us that some children lose their eligibility for Medicaid-funded services because their families’ income increased beyond Medicaid’s threshold or move in and out of eligibility as their families’ income fluctuates. Also, some child welfare officials said some children receive Medicaid because they are in foster care and lose their eligibility when they return home if the family is not eligible. Alternatively, juvenile justice officials in 6 states said that children in juvenile justice correctional or detention facilities lose Medicaid eligibility and have to reapply to resume coverage when they are released from the facility. In addition, in all 6 of the school districts we visited, schools used different eligibility criteria for mental health services than mental health or other Page 28 GAO-03-397 Children Placed to Obtain Mental Health Services child-serving agencies in their area. For example, school officials in four districts told us that some children with a mental illness are not eligible for mental health services through their special education programs because they were making adequate educational progress or because behavior problems—rather than mental illness—prevented them from making adequate progress. However, mental health officials who work with children attending some of these schools reported that schools often have a narrow definition of educational progress and do not recognize that inappropriate behavior might be a symptom of mental illness. For example, a parent of a child with attention deficit23 and bipolar disorders said her son’s school refused to provide special education services for him because his lack of educational progress was due to his failure to pay attention and to get his work done, rather than his mental illness, and a parent of a bipolar, schizophrenic son24 said school officials told her that she was responsible for her son’s behavior and poor school performance. Although a variety of officials said schools had more restrictive eligibility requirements for mental health than other child-serving agencies, school officials in a county in California said that their county mental health agency used a more restrictive definition than the schools. In California, state law required that county mental health agencies treat children covered by Medicaid and SCHIP who were diagnosed as SED or who were eligible for special education services.25 California also requires that children be evaluated by county mental health agencies and fit a statutory definition of SED. School officials said that these children get priority and their services consumed all available county child mental health resources. According to these officials, other children, including children with dual diagnoses of mental illness and substance abuse, mental retardation, or autism-related disorders and children without the required diagnoses have to wait for county mental health services or might not receive services at all, although some may receive services through their school guidance counselors or social workers. 23 Attention deficit disorder is a syndrome characterized by serious and persistent difficulties in attention span, impulse control, and, sometimes, hyperactivity. 24 Schizophrenia is a cluster of disorders characterized by delusions, hallucinations, disordered thinking, and emotional unresponsiveness. 25 The California legislature transferred the responsibility for providing mental health services to children in special education from schools to counties in the late 1980s. Page 29 GAO-03-397 Children Placed to Obtain Mental Health Services Some parents bypass eligibility restrictions for special education services and procedures for receiving child welfare, mental health, and juvenile justice services by petitioning the court to provide mental health and specific education services for their child. These petitions have varying names. For example, Maryland refers to them as CINS (children in need of supervision) petitions and Arkansas refers to them as FINS (family in need of services) petitions. Three of the states that we visited—Arkansas, Maryland, and Minnesota—allowed parents to directly petition the court to order mental health services for the child. In Arkansas, a child in a court-ordered residential placement was automatically eligible for Medicaid regardless of his or her family’s income. In that state, a variety of officials told us that court-ordered placement was the most common way for parents to obtain residential mental health and education services for their child. Juvenile court officials told us that parents often come to court requesting residential treatment and lobbying judges for placement in a specific facility. Some state officials were concerned that this practice could result in inappropriate placements for some children because judges can make placement decisions with no clinical input. Mental health and juvenile justice officials told us staff from private residential facilities often evaluate children on a pro bono basis and, based on these evaluations, recommend that judges place the children in their facility. These officials said that they were concerned about the objectivity of such evaluations. Misunderstandings of Agencies’ Program officials’ and service providers’ misunderstandings of agencies’ Responsibilities and Resources responsibilities and resources also affect service provision.26 For example, misunderstandings about Medicaid coverage created gaps and delays in services. In 3 states, some state and county officials did not know the Katie Beckett option could expand Medicaid coverage for children with a mental illness regardless of family status. In 1 of these states, a parent told us that county Medicaid officials incorrectly told her that her son was ineligible for coverage under this option because he had a two-parent family. In 2 other states, county mental health officials erroneously told us that this option applied only to children with very severe medical conditions. In another state, a Medicaid official did not know that children enrolled in SCHIP Medicaid expansion programs were entitled to EPSDT services. Furthermore, state child welfare officials in 2 states and mental 26 In commenting on a draft of this report, Education said that most of the federal laws concerning this population are purposely vague, open to interpretation, and (in the case of IDEA) actively supportive of state determination of actual procedures and how they will be interpreted. Page 30 GAO-03-397 Children Placed to Obtain Mental Health Services health workers in a third did not know Medicaid’s EPSDT provision includes mental health screenings, diagnosis, and treatment and thought the provision covered only physical health services. In all 6 states, some parents, a variety of state and local officials, mental health service providers, caseworkers, and judges misunderstood the role and responsibilities of schools in implementing IDEA. For example, some parents we interviewed in 5 of these states said that their children waited over a year to receive special education services because they and the mental health professionals they worked with did not understand the procedures IDEA required schools to follow. For example, some parents were told that referrals for special education had to be in writing. Also, some parents and professionals misunderstood that IDEA gives all eligible children, including children with a mental illness, the right to a free appropriate education and parents did not know that they could appeal a school’s decision about providing special education services. For example, a parent in Kansas agreed to home-school her 10 year old, sexually aggressive, child with a mental illness because the school would not put the child in a setting that would ensure the safety of his classmates. Despite her long-term involvement with a community mental health agency, this parent believed home schooling was her child’s only option. Although few strategies were developed specifically to prevent mental States Have health-related child welfare and juvenile justice placements, state and Developed a Range of local officials identified a range of practices that they believe may prevent such placements by addressing key issues that have limited access to child Practices That May mental health services in their state. State and local practices focused on Reduce the Need for three main areas: finding new ways to reduce costs or to fund services, consolidating services in a single location, and expanding community Some Mental Health- mental health services and supporting families. Many of these practices Related Child Welfare were developed to reduce treatment costs and provide a better way to and Juvenile Justice treat children with a mental illness in their communities. Although some programs were modeled on practices that had been evaluated in other Placements settings, the effectiveness of the practices is unknown because many of them were implemented on a small scale in one location or with a small target group or were too new to be rigorously evaluated. Page 31 GAO-03-397 Children Placed to Obtain Mental Health Services Finding New Ways to According to officials in the 6 states that we visited, one way to reduce the Reduce Costs or to Fund cost of services is to better match children’s needs to the appropriate level Services May Help of service. One goal of some of the programs we reviewed was to ensure that children with lower-level needs were appropriately served with lower- Agencies Pay for Mental level and less expensive services, reserving the more expensive services Health Treatment for children with more severe mental illnesses. Under New Jersey’s Systems of Care Initiative, the state contracted with a private, nonprofit organization for a variety of services, such as mental health screenings and assessments to determine the level of care needed, authorization of service, insurance determination, billing, and care coordination across all agencies involved with the children. When the Initiative is fully implemented statewide, the contractor in each county will use standardized tools to assess children’s mental health and uniform protocols to determine appropriate levels of care—children requiring lower levels of care will be referred to community-based providers, while children requiring a higher level of care will be approved to receive services from local Care Management Organizations specifically created to serve them. Presently, the System of Care Initiative has been implemented in 5 of the state’s 21 counties. As another cost-saving method, some programs substituted expensive traditional mental health providers with nontraditional and less expensive providers. Many state and local officials we interviewed in 5 of the states we visited told us that the historic way to treat children with a mental illness included psychiatrists and residential placements. However, officials in New Jersey, Kansas, and Minnesota said their states had switched their focus to using less expensive providers such as using nurses to distribute medicines instead of psychiatrists or nontraditional bachelor-level workers for case management instead of masters-level social workers. For example, Uniting Networks for Youth—a private, county-based provider in Minnesota—used two commercially available, highly structured programs that allowed them to substitute lower- credentialed bachelor-level staff under the supervision of a masters-level clinician as the primary service provider instead of using higher-level clinicians. County officials told us this structured program has many safeguards, including the collection of extensive data from providers, teachers, and families that allow masters-level clinicians to review the appropriateness and effectiveness of provided mental health services. State officials in 5 states also recommended increasing the use of volunteer and charitable organizations to reduce the cost of services because these organizations can provide inexpensive or free supportive services to children with a mental illness and their families. While these Page 32 GAO-03-397 Children Placed to Obtain Mental Health Services services were not therapeutic, officials said that they helped families cope with problems associated with mental illness and kept some mental health problems from escalating. For example, the Four County Mental Health Center in Kansas used volunteers from churches, community agencies, and charities, such as the Salvation Army, to provide services such as mentoring and tutoring for children with a mental illness. A county in New Jersey increased its reliance on Big Brother-Big Sister volunteers and the local YMCA to provide after school supervision and mentoring for children with severe mental illness. In addition to reducing the cost of services, state officials in all 6 states identified the blending of funds from multiple sources as another way to pay for services, thus working around agencies’ limitations on the types of mental health services and placement settings each can fund. For example, in a county in Maryland, a local Coordinating Council blends funds from multiple agencies to provide community-based services to children with a mental illness involved with the judicial, child welfare, and mental health systems and with district special education programs. The Council, headed by a judge, leveraged funding by inviting key decision makers—those that could commit resources—from a variety of child-serving agencies and organizations, including the local departments of social services and juvenile justice, the public defenders office, prosecutors, attorneys, and Catholic Charities, to serve on the Council. The Juvenile Alternative Defense Effort (JADE), a county juvenile justice diversion program in California, combines funds from a federal Juvenile Accountability Incentive Block Grant and the state Temporary Assistance for Needy Families Program (TANF)27 to provide the range of mental health services necessary to prevent a juvenile justice placement for mentally ill youths. In Kansas, the Family Service and Guidance Center blends funds from federal Medicaid and Department of Transportation programs, designated funds from the state’s Master Tobacco Settlement and Attorney General’s Office, funds from county juvenile justice and social services agencies, county general funds, the United Way, and several local philanthropic clubs to provide a wide range of mental health and supportive services for children who are seriously mentally ill in its county. 27 TANF, created by the Personal Responsibility and Work Opportunity Reconciliation Act of 1996, provides assistance and work opportunities to needy families by granting states federal funds and flexibility to develop and implement their own welfare programs. Page 33 GAO-03-397 Children Placed to Obtain Mental Health Services In addition to blending funds to pay for services, state officials in 4 of the 6 states that we visited identified the use of flexible funds, with few restrictions, to pay for nontraditional services that are not generally allowable under state guidelines. For example, Arkansas’s Together We Can Program used flexible funds from a federal Social Services Block Grant, state general revenue, and the Title IV-B program to provide a wide range of nontraditional supportive services and items to children with a mental illness and their families. Using these funds, the program provided services and items such as in-home counseling, community activities, respite care, mentoring, tutoring, clothing, and furniture that helped the family care for the child at home and supported the child in his community. Bringing Mental Health To improve access to mental health services and bring clarity to a Services into a Single confusing mental health system, 3 of the states that we visited developed a Location May Improve facility to be a single point of entry into the mental health system. Typically, several agencies are represented at the facility and children are Access assessed with a common instrument and eligible for the same services regardless of what agency had primary responsibility. Kansas’s Shawnee County Child and Family Resource Center is a one-stop facility and, according to state mental health officials, a model for the rest of the state. The center houses workers from 11 social services agencies, including mental health, child welfare, juvenile justice, and education. All children with mental health needs, regardless of which agency first encountered the child, are referred to the center. Case managers at the Center assess the child’s psychological, educational, and functional needs, determine appropriate services and placements, make referrals, provide some direct counseling services, and determine how to pay for services. The facility includes four bedrooms for children who need to be removed from their homes for short periods of time and a secure juvenile justice intake suite that is staffed 24 hours a day. County officials from a variety of agencies told us that the center ended service fragmentation and prevented duplication of services for children with a mental illness and their families by implementing one intake procedure for all county social services. For example, case managers work with police to prevent the placement of children with mental illness in correctional facilities. If a mental illness is identified during the intake assessment, the intake workers immediately link the child with a mental health worker. Working collaboratively with juvenile justice, school, and other appropriate officials, the case manager Page 34 GAO-03-397 Children Placed to Obtain Mental Health Services develops a diversion28 plan all can agree to that is aimed at preventing the need for juvenile justice or child welfare custody, or residential or other out-of-home placements with the goal of keeping the child at home with the child’s own family. State officials in all 6 of the states that we visited also identified co- locating services in public facilities such as schools and community centers as another way to improve access. In California, Los Angeles county officials told us that integrating mental health services into the school system has been a very effective way of reaching poor families without transportation and working families, and helps to ensure regular participation in mental health services. In Harford County, Maryland, for example, mental health services are collocated at an elementary school specifically to improve access to care for students with mental illness. Using county health and mental health funds, the school developed an in- house mental health clinic that provides mental health services through a bachelor-level social worker, a nurse practitioner, and consultative services from a physician and a psychiatrist. In addition, the school has a variety of internal support staff available to children with a mental illness, including a guidance counselor, a behavior specialist, a home visitor who supports families and assesses the home situation, and a pupil personnel worker who visits homes and helps with transportation issues. The school has several programs available to children with a mental illness, including the Classroom Support Program, an intensive, in-school program for children with a mental illness staffed with a full-time school psychologist for individual counseling; the Teen 2000 program, a mentoring program for teens that uses paid school staff, high school students, and volunteer community members to provide a combination of homework support, play, and social skills development; the School Outreach Advocacy Program, a program that provides counseling, tutoring, recreation, social skills groups, home visits, referrals and some psychiatric rehabilitation services; Project Prepare, a program to identify mentally ill elementary school children and increase their access to services; and two collaborative programs with contracted mental health providers that provide community support and prevention services and intensive case management services. 28 Diversion programs attempt to prevent or reduce the time children spend in inappropriate placements. Page 35 GAO-03-397 Children Placed to Obtain Mental Health Services Expanding Community Officials from child-serving agencies in all 6 states we visited identified the Mental Health Services and expansion of the number and range of community-based services to Supporting Families May provide an entire continuum of care as a way to improve treatment for children with a mental illness. Some programs we reviewed developed a Improve Treatment for complete range of community-based mental health services for children, Children with a Mental including early intervention, diversion, transitional services, and crisis Illness intervention. In addition, some programs supported families of children with a mental illness and encouraged parent involvement in their children’s care. State and county officials we spoke with in all 6 states stressed the importance of early identification of children at risk of mental illness and the provision of therapeutic services when they were young in hopes of preventing the need for extensive, and costly, residential services later on. Examples of these programs follow. Early Intervention: Working with local hospitals, workers from the Family Service and Guidance Center in Shawnee County, Kansas, screen newborns in local hospitals. If babies appear at-risk, social workers conduct home visits and refer families to health care professionals or others for support. The Center also developed a therapeutic preschool practice directed at 3-5 year old children, with or without a mental illness diagnosis, who were likely to need special education services when they entered kindergarten. The program serves 32-36 children and provides a half-day of services. Diversion: Los Angeles’ JADE was designed to prevent or reduce the time of expensive juvenile justice placements for youths with mental illness, by arranging assessments, providing referrals to mental health providers and advocating for these youth to ensure they receive the treatment they need. Upon referral to JADE, a psychiatric social worker performs an extensive psychosocial evaluation, including a developmental history, family history, and educational history that include failures and successes, gang-related behaviors, delinquency behaviors, and a mental health status exam. Based on the evaluation, the social worker makes placement and service recommendations to the juvenile court judge who makes the final decisions. JADE officials said that the evaluations and recommendations give the judges the information they need to consider alternatives to incarceration. Transitional Services: State and county juvenile justice and mental health officials in the 6 states we visited stressed the importance of including transitional services in a continuum of care. These services are typically provided to a child leaving a residential setting and returning to his or her home or community. For example, Minnesota’s Red Wing facility Page 36 GAO-03-397 Children Placed to Obtain Mental Health Services is a secure juvenile justice facility that provides in-house mental health services and places a strong focus on transitional services so youth can successfully reenter their own community. Red Wing officials told us that transition planning and reintegration efforts are very important in preventing recidivism and they take several steps to ensure a successful transition. The program is designed in levels that reward good behavior by allowing youth to move to lower levels of supervision. For instance, at level 4, youth begin to transition back to the community by making periodic visits, called furloughs, to their homes. Officials see furloughs as an opportunity for youth to try out the new positive behaviors that they have learned. At level 5, youth move to a transitional living unit at Red Wing that focuses on applying new skills to activities in their homes and communities. After youth leave Red Wing, a county juvenile justice worker monitors them for 90 days. Out of frustration with the difficulties it had finding appropriate services for mentally ill youth who were aging out of child mental health programs, The Sycamores, a residential mental health facility in Los Angeles County, California, created community-based transitional homes for older teens who were leaving their facility and were unable to return to their own homes. Its Emancipated Youth Program provides an apartment for every two residents, a youth advocate worker to provide support, and case managers to coordinate services. For this program, the Sycamores uses reasonably priced private apartments in the community, instead of a group home that would house several mentally ill youths in the same building. When the youths become able to live independently, the Sycamores turns the leases over to them. They also started a business card company at one community center to provide vocational training for adolescents aging out of their program. Crisis Intervention: Programs we reviewed in 4 states had a mobile crisis unit. These units consist of teams of staff that visit homes to stabilize crisis situations. Funding, staffing, and authority of these teams vary. Some of the crisis teams can provide direct mental health services; others conduct assessments and make emergency petitions to psychiatric hospitals on behalf of the family. One of the difficulties noted by program officials is determining how to pay for crisis services since these services may not be covered by insurance and families may not have the ability to pay. In Harford County, Maryland, the mobile crisis team is not a fee-for- service provider but is funded by a grant. The team—a psychiatrist, a psychologist, and a licensed social worker—provide direct mental health services and are authorized to do an emergency petition to get a child with a mental illness admitted to a hospital psychiatric unit. Page 37 GAO-03-397 Children Placed to Obtain Mental Health Services A second way some states improve treatment for children with a mental illness is to provide services to support families and encourage parental involvement in their child’s care. State and local officials in all 6 states pointed out that involving parents was a fundamental change in philosophy. Previously, services were provided solely to the children and parents were not included in the decisions about their child’s care. Now, the focus is on providing the services parents need to maintain the child in the home and helping parents make informed decisions about their child’s care. For example, The Sycamores works extensively with parents of children who are seriously mentally ill at the facility and requires their participation. To help parents successfully prepare for and keep their child with a mental illness at home, The Sycamores provides a variety of supportive services—anything the family needs to make a child’s return home successful—including household items like refrigerators, washers, dryers, stoves, and car seats, and services such as transportation to and from the facility. In addition, as part of its transitional Home-Based Program, The Sycamores trains parents to use Therapeutic Behavioral Services (TBS), one-on-one, in-home services provided whenever needed 24 hours a day, 7 days a week. TBS workers model good parenting skills so parents will be prepared for their child’s return home, such as modeling for the parents how to get their child with a mental illness who may have violent outbursts ready for the school bus in the morning without incident. The Four County Mental Health Center in Kansas’s provides free parenting classes designed to teach effective parenting skills for children with mental illness and a parent support coordinator who can provide support and information on mental health services for children. The Center also works with Kansas’s Keys for Networking, a statewide parent advocacy organization that educates parents about their child’s right to services and advocates on their behalf to obtain needed services. Some parents are placing their children, mostly adolescent boys with Conclusions severe mental illness, in the child welfare and juvenile justice systems to access mental health services. Although these children may not have been abused or neglected, or may not have committed a criminal or delinquent act, parents are turning to these agencies because they see no alternatives for obtaining comprehensive services for them. Because federal, state, and local agencies do not systematically track these children, the extent and outcomes of these placements are not fully known. Experts, agency officials, and service providers agree that agencies must work together to meet the needs of children who are severely mentally ill because these children have complex problems and are likely to need Page 38 GAO-03-397 Children Placed to Obtain Mental Health Services services from multiple community agencies, such as mental health and education, if they are to remain in their communities or if they are to successfully transition from a residential facility back to their community. However, in some cases, state and local officials’ misunderstandings of each agency’s service requirements, responsibilities, and resources prevent the provision of interagency services that have the potential to address the needs of these children and their families. Opportunities exist for HHS, DOJ, and Education to determine the causes for these misunderstandings at the state and local level and to identify ways to reduce them. Although states and counties are implementing practices that may reduce the need for parents to place their children with child welfare or juvenile justice agencies, many of the programs are new, small, and only serve children in specific localities. Furthermore, their effectiveness in achieving their multiple goals—such as reducing the cost of mental health services, supporting families, and helping children overcome their mental illnesses—has not yet been fully evaluated. Given that states and localities are developing new approaches to meeting the needs of children with mental illness, it is important that the federal government continue its role in supporting evaluations of these programs and disseminating the results. To determine the extent to which children may be placed inappropriately Recommendations in the child welfare and juvenile justice systems in order to obtain mental health services, we recommend that the Secretary of HHS and the Attorney General investigate the feasibility of tracking these children to identify the extent and outcomes of these placements. To help reduce misunderstandings at the state and local level, we also recommend that the Secretaries of HHS and Education and the Attorney General develop an interagency working group (including representatives from CMS, SAMHSA, and ACF) to identify the causes of these misunderstandings and create an action plan to address those causes. We further recommend that these agencies continue to encourage states to evaluate the child mental health programs that they fund or initiate and that the Secretaries of HHS and Education and the Attorney General determine the most effective means of disseminating the results of these and other available studies to state and local entities. We provided a draft of this report to Education, HHS, and DOJ to obtain Agency Comments their comments. Each agency provided comments, which are reproduced Page 39 GAO-03-397 Children Placed to Obtain Mental Health Services in appendixes III, IV, and V. These agencies also provided technical clarifications, which we incorporated when appropriate. Education generally agreed with the findings of our report, but asked that we change some terminology to be consistent with terminology used in IDEA. We changed this terminology to reflect IDEA when needed. HHS also generally agreed with the findings and said that the report is comprehensive, interesting, and provides an informative overview of the concerns with which child welfare agencies and juvenile justice systems are confronted when children and youth do not receive adequate mental health services within the community. However, HHS also said that the report is relatively critical of state and local agencies for “inappropriately” using child welfare and juvenile justice placements to get services to children who need them and cannot access them through other channels. HHS further stated that a broader look at the status of children’s mental health services in general would be useful because the problems leading parents to place their children in child welfare and juvenile justice systems to obtain mental health services are part of the bigger problem of children’s mental health services in general, such as limited or non- existent services, a lack of access, and a lack of quality providers. Although a broad assessment of the availability and effectiveness of children’s mental health services was beyond the scope of this report, we have conducted studies relevant to these problems and reference to them can be found in the related products list at the end of this report. The purpose of this report was to shed light on the number of children placed in the two systems solely to receive mental health services and the factors that lead to those placements. In doing so, this report does not criticize state and local child welfare and juvenile justice agencies that place these children, but instead identifies the circumstances under which these agencies play a role in meeting mental health needs, as well as the roles that other agencies should play. DOJ also generally agreed with our findings but was concerned that the estimates of children placed provided by child welfare and juvenile justice officials would be taken as solid and conclusive and be used for policy changes without further study being undertaken. We explicitly acknowledged the limitations of these estimates in the report and we recommended that the Secretary of HHS and the Attorney General investigate the feasibility of obtaining more precise numbers by tracking these children. Doing so will allow the agencies to determine the extent of the problem. In commenting on the recommendations, Education said that it was not clear to them how collecting more data and tracking outcomes will increase the likelihood of progressive practices to provide children’s Page 40 GAO-03-397 Children Placed to Obtain Mental Health Services mental health services. HHS said that asking the agencies to track this population of children in foster care does not address the larger point of the lack of mental health resources for families and communities and does not address the problems of the children or their parents. HHS also said we failed to identify to what end these data would be used and that a request for appropriate funding for states and federal agencies involved in tracking should accompany the recommendation for tracking. DOJ agreed that tracking should take place, but only in the short term, and that HHS should take the lead in such an effort. As we stated in our recommendation, we believe HHS and DOJ should determine the feasibility of tracking children to identify the extent and outcomes of the mental health placements discussed in the report. Knowledge of the extent of this practice is a necessary first step to determine what corrective actions might be taken and might be useful in identifying which progressive practices will most benefit these children. In addition, without this basic information, the agencies may unknowingly limit the action steps that they develop to alleviate state and local officials misunderstandings and thus fail to maximize access to and the use of existing resources. While the report recognizes that some mental health resources may be limited, it also describes the misunderstandings that exist among state and local officials regarding each agency’s service requirements, responsibilities, and resources. If such misunderstandings could be corrected, more children could possibly be served by the agencies better designed to meet their mental health needs. Since HHS and DOJ already track various characteristics of all children placed in the child welfare and juvenile justice systems, these agencies should determine the feasibility of adding data elements regarding placement solely to receive mental health services and determine appropriate time frames for collecting these data. HHS also said that our estimate of the number of children placed was presented without context, and asked how the number compares with various groups—such as the total number of children placed in the two systems and the number of children who remain outside the system but are in need of the same kinds of services. We could not, however, make these comparisons because no agency was tracking these children and we necessarily relied on the estimates provided, which we believe to be an underestimate for the reasons stated in this report. All three agencies said they would participate in any interagency working group that might be established based on our recommendation and DOJ recommended using the existing Coordinating Council on Juvenile Justice and Delinquency Prevention. We believe several organizational entities Page 41 GAO-03-397 Children Placed to Obtain Mental Health Services may be appropriate and that the member agencies forming this group should determine the entity that is best suited. HHS, however, said that an interagency working group would do little to address the lack of resources. We believe that identifying the causes of the misunderstandings that are occurring is a first step toward addressing the lack of resources. Such a group, by promoting a more consistent understanding of the roles and resources of state and local agencies, may improve access to services and result in more effective utilization of existing resources. Education commented that we should be more specific on the role of the working group in addressing major differences in terminology and definitions across various legislation, enormous differences in local interpretation of federal definitions, and in local practices for establishing eligibility. Education added that such a group would not have the power to address congressional lawmaking and noted that no recommendations were made for increased grant spending to duplicate or disseminate the positive features of such practices. We believe that our recommendation is broad enough to encompass the list of issues Education mentions. We also believe that our recommendation does not preclude the group from recommending legislative changes as part of its action plan. Regarding Education’s comment on information dissemination, we added a recommendation to that effect. DOJ also said that while evaluating child mental health programs is a worthwhile goal, states should consider evaluating their entire systems of care for children to determine (1) how many children with serious mental illness are in need of care but unable to obtain it, (2) how state and local child-serving agencies attempt to address the needs of these children, and (3) how effective these systemic efforts are in actually meeting these needs and those of their families. While we concur that such evaluations are worthwhile, including this suggestion is beyond the scope of our report. We also provided a copy of our draft to state officials in the 6 states we visited (Arkansas, California, Kansas, Maryland, Minnesota, and New Jersey). Kansas provided technical clarifications, which we incorporated when appropriate. Minnesota made a general comment that required no changes in the report, and California said that it had no suggested corrections or edits. We are sending copies of this report to the Secretaries of HHS and Education and the Attorney General, appropriate congressional committees, state child welfare directors, selected juvenile justice Page 42 GAO-03-397 Children Placed to Obtain Mental Health Services officials, and others who are interested. We will also make copies available to others upon request. In addition, the report will be available at no charge on GAO’s Web site at http://www.gao.gov. If you or your staff have any questions, or wish to discuss this material further, please call me at (202) 512-8403 or Diana Pietrowiak at (202) 512-6239. Key contributors to this report are listed in appendix VI. Cornelia M. Ashby Director, Education, Workforce, and Income Security Issues Page 43 GAO-03-397 Children Placed to Obtain Mental Health Services Appendix I: Scope and Methodology Appendix I: Scope and Methodology To obtain estimates of the number and characteristics of children voluntarily placed in the child welfare and juvenile justice systems to receive mental health services, we conducted two surveys. We sent the first survey to state child welfare directors in the 50 states and the District of Columbia. We conducted the second survey by telephoning directors of county juvenile justice agencies in large counties in the 17 states with the largest populations of children under age 18. Overall, 71 percent of the children in juvenile justice facilities resided in these states. In most cases, we interviewed juvenile justice agencies in the two largest counties in each state. We chose to survey a sample of juvenile justice officials at the county level because, unlike child welfare, all states do not have a juvenile justice agency. Also, children who enter the juvenile justice system for mental health services are more difficult to identify than children who enter through child welfare systems because parents cannot directly place children in juvenile justice systems and children cannot enter juvenile justice solely to access mental health services. Telephone contacts with local juvenile justice officials allowed us to obtain information from individuals who were more likely than state officials to have direct knowledge of how children enter the juvenile justice system. We asked both groups to estimate1 the number of children voluntarily placed in their system by actions of their parents in order to obtain mental health services, the characteristics of the children, and factors influencing the rate of placements. Table 6 provides survey numbers and response rates for the surveys. Table 6: Survey Numbers and Response Rates Number of Number of survey Survey of surveys conducted responses received Child welfare directors 51 47 Juvenile justice officials 33 33 Source: GAO. Not all respondents to the surveys answered every survey question. For example, 19 respondents to the child welfare survey and 30 respondents to the juvenile justice survey provided estimates of number of children 1 Child welfare directors and juvenile justice officials used a variety of means to estimate the numbers of children placed. For example, some child welfare directors spoke to their counterparts at the local level and asked them to provide estimates. In other instances, the directors estimated based on the number of children receiving the highest level of mental health services. Page 44 GAO-03-397 Children Placed to Obtain Mental Health Services Appendix I: Scope and Methodology placed. Some respondents indicated that they were unable to access information to generate estimates. Site Visits To determine the factors that influence child welfare and juvenile justice placements for mental health services, we included questions on these issues in our surveys and interviewed federal, state, and local officials and national child mental health experts. We interviewed officials at the Department of Health and Human Services (HHS), the Department of Justice (DOJ), and Education. We spoke with state and local officials in 6 states—Arkansas, California, Kansas, Maryland, Minnesota, and New Jersey—and in one county in each of these states. The officials represented state and county agencies that were responsible for child welfare, child mental health, Medicaid, juvenile justice and education services. We also interviewed judges in 5 states and caseworkers and parents in all 6 states. Staff of community mental health centers and other programs serving families with children with a mental illness, such as a Family Support Organization and a residential treatment facility, selected parents of children with, or who had, severe mental illness and invited them to attend our interviews. We selected states that varied in geographical location, legal requirements concerning placement, the use of Medicaid options and waivers, and the authority of state and county agencies in administering child welfare and juvenile justice programs; and counties that varied in demographic characteristics. To identify promising practices that may reduce the need for some child welfare and juvenile justice placements by meeting the needs of children with a mental illness and their families, we asked national experts and state and local officials to identify such practices in the states that we visited. We visited 16 programs that embodied these practices. We conducted our work between March 2002 and February 2003 in accordance with generally accepted government auditing standards. Page 45 GAO-03-397 Children Placed to Obtain Mental Health Services Appendix II: State Statutes Containing Appendix II: State Statutes Containing Language Allowing Voluntary Placement to Obtain Mental Health Services Language Allowing Voluntary Placement to Obtain Mental Health Services Table 7: Statutes in 11 States Allowing Parents to Place Children in Child Welfare Systems in Order to Obtain Mental Health Services While Retaining Custody of the Child State Statute citation Statute Alaska M.S.A. Section 260C.201 (3) Where a parent enters into a voluntary placement agreement, the agreement may not preclude the parent from regaining care of the child at any time. Colorado C.R.S.A. Section 19-3-701(1) Where a parent voluntarily places a child out of the home for the purpose of obtaining treatment for an emotional disability solely because the parent is unable to provide care, relinquishment of legal custody is not required. Connecticut C.G.S. A. Section 17a-129 Their shall be no requirement for the Department to seek custody or protective supervision of a child or youth who needs or is receiving voluntary services unless the child or youth is otherwise alleged to be neglected or abused. Iowa I.C.A. Section 232.1784 and 232.182 Petitions for voluntary placements shall describe the child’s emotional (5) (d) disability which requires care and treatment; the reasonable efforts to maintain the child in the child’s home; a determination of whether services or support provided to the family will enable the family to continue to care for the child in the child’s home; and the reason the child’s parent has requested a foster care placement. A court may only order foster care placement if it makes a determination that services or support provided to the family will not enable the family to continue to care for the child in the child’s home. If the court finds that reasonable efforts have not been made and that services or support are available to prevent placement, the court may order the services or support to be provided to the child. Maine 22 M.R.S.A. Section 4004-A(1) and (2) If certain conditions are met, a parent may enter into a voluntary placement agreement in which the parent retains legal custody of the child. Minnesota M.S.A. Section 260C.201(3) If a court determines a child is in need of special services to treat a mental disability, the court may order the child’s parent or health plan company to provide such services. If the parent or the health plan is unable to provide care, the court may order that treatment be provided. If the child’s disability is not the result of abuse or neglect by the parent, the court shall not transfer legal custody of the child in order to obtain treatment solely because the parent is unable to provide care. North Dakota N.D.C.C. 50-06-06.13 The Department of Human Services may not require a parent to relinquish legal custody in order to have the child voluntarily placed. Oregon O.R.S. Section 418.312(1)and (2) To have a child placed in a foster home, group home, or institutional child care setting for the sole purpose of obtaining services for the child’s emotional or mental disorder, a parent is not required to transfer legal custody. Rather, the child is placed pursuant to a voluntary placement agreement that specifies the rights and obligations of the parent, the child, and the Department of Human Services. Rhode Island R.I.S.T. Section 14-1-11.1 Where a parent voluntarily places a child with an emotional disorder with the Department of Human services for the purpose of accessing an out-of- home program, relinquishment of legal custody is not required. Wisconsin W.S.A. Section 48.13(4) and Where a parent is financially unable to provide treatment for a child, the 938.34(6)(a) and (ar) parent may sign a petition giving a court exclusive jurisdiction. The court may then order an appropriate agency to provide treatment whether or not legal custody has been taken from the parent. Vermont 33 V.S.A. Section 4305(g) A child with an emotional disorder may receive services, including an out- of-home placement, without a parent surrendering legal custody. Source: GAO analysis. Page 46 GAO-03-397 Children Placed to Obtain Mental Health Services Appendix III: Comments from the Department Appendix III: Comments from the of Education Department of Education Page 47 GAO-03-397 Children Placed to Obtain Mental Health Services Appendix III: Comments from the Department of Education Page 48 GAO-03-397 Children Placed to Obtain Mental Health Services Appendix III: Comments from the Department of Education Page 49 GAO-03-397 Children Placed to Obtain Mental Health Services Appendix III: Comments from the Department of Education Page 50 GAO-03-397 Children Placed to Obtain Mental Health Services Appendix IV: Comments from the Department of Health and Human Services Appendix IV: Comments from the Department of Health and Human Services Page 51 GAO-03-397 Children Placed to Obtain Mental Health Services Appendix IV: Comments from the Department of Health and Human Services Page 52 GAO-03-397 Children Placed to Obtain Mental Health Services Appendix IV: Comments from the Department of Health and Human Services Page 53 GAO-03-397 Children Placed to Obtain Mental Health Services Appendix IV: Comments from the Department of Health and Human Services Page 54 GAO-03-397 Children Placed to Obtain Mental Health Services Appendix IV: Comments from the Department of Health and Human Services Page 55 GAO-03-397 Children Placed to Obtain Mental Health Services Appendix V: Comments from the Department of Justice Appendix V: Comments from the Department of Justice Page 56 GAO-03-397 Children Placed to Obtain Mental Health Services Appendix V: Comments from the Department of Justice Page 57 GAO-03-397 Children Placed to Obtain Mental Health Services Appendix V: Comments from the Department of Justice Page 58 GAO-03-397 Children Placed to Obtain Mental Health Services Appendix VI: GAO Contacts and Acknowledgments Appendix VI: GAO Contacts and Acknowledgments Diana Pietrowiak (202) 512-6239 GAO Contacts Kathleen D. White (202) 512-8512 In addition to those named above, Karen A. Brown, Erin Williams, and Acknowledgments Katherine L. Wulff made key contributions to the report. Rebecca Shea, Patrick Dibattista, Alice London, Behn Miller, and Carolyn Yocom provided key technical assistance. Page 59 GAO-03-397 Children Placed to Obtain Mental Health Services Related GAO Products Related GAO Products Medicaid and SCHIP: States Use Varying Approaches to Monitor Children’s Access to Care. GAO-03-222. Washington, D.C.: January 14, 2003. Mental Health Services: Effectiveness of Insurance Coverage and Federal Programs for Children Who Have Experienced Trauma Largely Unknown. GAO-02-813. Washington, D.C.: August 22, 2002. Medicaid and SCHIP: Recent HHS Approvals of Demonstration Waiver Projects Raise Concerns. GAO-02-817. Washington, D.C.: July 12, 2002. Foster Care: Recent Legislation Helps States Focus on Finding Permanent Homes for Children, but Longstanding Barriers Remain. GAO-02-585. Washington, D.C.: June 28, 2002. Long-term Care: Implications of Supreme Court’s Olmstead Decision Are Still Unfolding. GAO-01-1167T. Washington, DC: September 24, 2001. Medicaid and SCHIP: States’ Enrollment and Payment Policies Can Affect Children’s Access to Care. GAO-01-883. Washington, D.C.: September 10, 2001. Medicaid: Stronger Efforts Needed to Ensure Children’s Access to Health Screening Services. GAO-01-749. Washington, D.C.: July 13, 2001. Medicaid Managed Care: States’ Safeguards for Children With Special Needs Vary Significantly. GAO/HEHS-00-169. Washington, D.C.: September 29, 2000. Children with Disabilities: Medicaid Can Offer Important Benefits and Services. GAO/T-HEHS-00-152. Washington, D.C.: July 12, 2000. Mental Health Parity Act: Employer’s Mental Health Benefits Remain Limited Despite New Federal Standards. GAO/T-HEHS-00-113. Washington, D.C.: May 18, 2000. Mental Health Parity Act: Despite New Federal Standards, Mental Health Benefits Remain Limited. GAO/HEHS-00-95. Washington, D.C.: May 10, 2000. Medicaid Managed Care: Challenges in Implementing Safeguards for Children with Special Needs. GAO/HEHS-00-37. Washington, D.C.: March 3, 2000. (130098) Page 60 GAO-03-397 Children Placed to Obtain Mental Health Services The General Accounting Office, the audit, evaluation and investigative arm of GAO’s Mission Congress, exists to support Congress in meeting its constitutional responsibilities and to help improve the performance and accountability of the federal government for the American people. GAO examines the use of public funds; evaluates federal programs and policies; and provides analyses, recommendations, and other assistance to help Congress make informed oversight, policy, and funding decisions. GAO’s commitment to good government is reflected in its core values of accountability, integrity, and reliability. The fastest and easiest way to obtain copies of GAO documents at no cost is Obtaining Copies of through the Internet. 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Child Welfare and Juvenile Justice: Federal Agencies Could Play a Stronger Role in Helping States Reduce the Number of Children Placed Solely to Obtain Mental Health Services
Published by the Government Accountability Office on 2003-04-21.
Below is a raw (and likely hideous) rendition of the original report. (PDF)