Falling through the cracks: Gaps and barriers in the mental health system for America’s disadvantaged children

Abstract

The system for providing mental health services to children is fragmented and complex, and children and their families face multiple barriers to accessing care. This is especially true for children in low-income families, who have the greatest rate of mental health disorders but have the highest underutilization of services. The first section of this paper describes the unmet need for children’s mental health services, including reasons for the disproportionate need among low-income children. The second section provides a brief overview of the history of children’s mental health policies. The third section outlines the types of services available to children, highlighting the problems with this service delivery system. This is followed by a discussion of barriers that families face in accessing care. The paper concludes with recommendations for improving this fragmented system of service delivery.

1. Introduction

On July 18, 2008, Nebraska became the fiftieth state to have in effect a “safe haven” law, the intent of which was to prevent desperate parents from abandoning their unwanted newborn infants to die. Under the new law, parents were permitted to relinquish their biological children to the care of the state by leaving them with hospital staff; the parents would not be prosecuted and would not have to go through the full process of custody relinquishment. Unlike other states’ Safe Haven laws, however, Nebraska’s law did not specify a limit on the age of the children that could be relinquished. By the time the law was amended to limit it to babies under 30 days of age on November 22, 2008, a total of 36 children had been relinquished to the state under the Safe Haven law, the majority of whom (30 out of 36) were between 11 and 17 years of age (Nebraska Department of Health and Human Services (NE DHHS), 2008a). This unintended consequence of Nebraska’s Safe Haven law was the subject of considerable media attention and public outcry, which characterized the parents involved as irresponsible caregivers who were “dumping” their children on the state (Kavanagh, 2008).

Less media attention was paid to a troubling commonality among these cases, specifically that they were relinquished because their parents could no longer afford or manage the mental health care the youth needed for serious mental and behavioral problems (Carmichael, 2008; Eckholm, 2008). In an analysis of the children abandoned under the initial Safe Haven law, Nebraska’s Department of Health and Human Services determined that 30 of the children had received some form of mental health services before being relinquished, 11 of whom had received some form of inpatient mental health treatment (NE DHHS, 2008b).

Far from being uninvolved and uncaring parents, the parents interviewed in media stories appeared to want what was best for their children but had exhausted the resources available to them. One parent interviewed by Newsweek said that when she called the hospital before dropping off her son, “The one question I had for them was, will he get the help he needs?” (Carmichael, 2008, para. 15). She said of her experience dropping her son off at the hospital, “…I told him I loved him and gave him a kiss and a hug, and he didn’t respond. Then I left and I cried all the way home. It was the longest drive of my life” (Carmichael, 2008, para. 16). If this mother’s case is any indication, these parents did not make this decision lightly or rashly and only did so as a last resort and with their children’s best interests in mind.

From the state’s perspective, the amendment limiting Nebraska’s LB 157 law to babies under 30 days old is a quick fix for the immediate problem of parents ‘abandoning’ older children and teenagers. However, the amendment fails to address the much larger issue that was inadvertently revealed by Nebraska’s original Safe Haven law, namely that there is a pervasive unmet need for accessible mental health services for children in general, and for low-income children in particular.

More than twenty years after Jane Knitzer (1982) documented the failures of the mental health system to meet the needs of children in her seminal work, Unclaimed Children: The Failure of Public Responsibility to Children and Adolescents in Need of Mental Health Services, many if not most of the problems she highlighted persist. According to data from the National Survey of American Families, only 21% of children in need of mental health services actually receive them; the 79% that do not receive mental health care translates into 7.5 million children between the ages of 6 and 17 who are in need of mental health evaluation in the United States but do not receive it (Kataoka, Zhang, & Wells, 2002). Children in low-income families have the highest rate of underutilization of services, a finding that is particularly troubling given their disproportionate need for such services (National Center for Children in Poverty (NCCP), 2006; Substance Abuse and Mental Health Services Administration (SAMHSA), 1999). The system for providing mental health services to children is fragmented and complex, and children and their families face multiple barriers to accessing care.

2. The disproportionate need for mental health services among disadvantaged children

It has been well documented that poverty is a risk factor for the development of mental health disorders in children and youth (Knitzer, 1996b; McLearn, Knitzer, & Carter, 2007). In a 1999 report on mental health, the Surgeon General estimated that there were between six and nine million children and adolescents with serious emotional disturbances, accounting for between 9 and 13% of all children and adolescents in the United States (SAMHSA, 1999). Prevalence rates vary with children’s socio-demographic characteristics. Among low-income children and youth (between the ages of 6 and 17), over one-fifth (21%) have mental health problems (NCCP, 2006). Children from poor or low-income families are disproportionately likely to suffer from mental illness, with children in poor families having a higher rate of mental health problems than their ‘near-poor’ and ‘non-poor’ counterparts (Howell, 2004). Low socioeconomic status has been found to be the strongest predictor in early childhood of emotional problems by age 18 and to account for much of the racial/ethnic disparities in children’s social–emotional and behavioral problems (Werner & Smith, 1992).

One mechanism by which low income may increase children’s vulnerability to mental health and behavioral problems is by increasing their exposure to other risk factors such as life stressors, violence, parental distress, parental depression, and substance abuse, which in turn affect children’s behavior and mental development. Children in low-income families are at increased risk of being exposed to community and interpersonal violence, and such exposure to violence is a predictor of children’s mental health outcomes (Buckner, Beardslee, & Bassuk, 2004; McLearn et al., 2007). Cumulative exposure to violence over one’s lifetime has negative effects on low-income children’s mental health. Children with ongoing and cumulative exposure to violence may develop a perception that they are constantly in danger, which may result in heightened levels of mental health problems such as fear and anxiety (Buckner et al., 2004). There is also ample evidence that parents in poverty are under a great level of financial and emotional stress that can affect their parenting behaviors, which in turn affect the mental health of their children (Aber, Jones, & Cohen, 2000; Fraser, 2006; Gershoff, Aber, Raver, & Lennon, 2007; Knitzer & Cohen, 2007; McLeod & Shanahan, 1996). Being overwhelmed by the day-to-day barriers to survival can drain caregivers’ energy, and financial and emotional stress can limit their ability to provide emotional support when interacting with their children (Aber et al., 2000; Shonkoff, Lippitt, & Cavanaugh, 2000). By negatively affecting caregivers’ parenting, these stressors can negatively affect infant attachment, resulting in cognitive and behavioral disorders (Aber et al., 2000). These stressors can also lead to marital problems among parents, an increase in the use of punitive parenting practices, and neglectful parenting, all of which can negatively affect children’s social and emotional behavior and can increase the risk for emotional and behavioral disorders (McLeod & Shanahan, 1996; Strohschein, 2005). Parents in poverty also have a higher rate of depression and substance abuse than non-poor parents, which can also have an indirect effect on the mental health outcomes of children (Aber et al., 2000; Shonkoff et al., 2000). Parental depression and substance abuse can indirectly affect mental health outcomes of children by negatively affecting parenting practices and impeding infant development (Aber et al., 2000). Parental depression, for example, is a risk factor for poor parenting, leading to an increased risk of anxiety and conduct disorders in children and adolescents (Fraser, 2006).

The longer a child lives in poverty, the greater his/her risk is to develop mental health problems (Gyamfi, 2004; McLeod & Shanahan, 1996). The development of mental health disorders is therefore often a result of persistent poverty rather than just current material hardship. More chronic stressors put children at greater risk of poor social, emotional, and cognitive outcomes (Raver & Knitzer, 2002). Persistent poverty leads to higher rates of depression, anxiety, antisocial behavior, and aggression (Gonzalez, 2005). Early histories of poverty are also a predictor of later depressive symptoms (McLeod & Shanahan, 1996).

Poverty therefore has multiple indirect effects on children’s emotional and behavioral development, resulting in the disproportionate need for mental health services among low-income children. Research has shown that a combination of risk factors explains the development of mental health disorders better than single factors (Shonkoff et al., 2000). It is not poverty alone, but rather the combination of poverty and risk factors, such as exposure to violence and dysfunctional family life, that put a child at greater risk of developing mental health problems.

Given the high rates of need for mental health services among children in poverty, it is particularly troubling that those in poverty are more likely to terminate services or receive services for shorter periods of time (SAMHSA, 1999). Research also shows that African American and Hispanic children are most likely to have unmet mental health needs (RAND, 2001). Hispanic children have the highest percentage of unmet mental health needs. They are 2.6 times less likely to have their needs met than white children (Kataoka et al., 2002). Hispanic children and youth are also the least likely to access specialty care (RAND, 2001).

3. The history and incremental reforms of children’s mental health services in the U.S.

The current children’s mental health service system lacks an overarching policy that mandates mental health services for all children. Rather, the system rests upon a patchwork of policies that developed in areas outside of mental health, such as the education, child welfare, and juvenile justice systems. Policies have also been adapted from those focused on adult mental health (Lourie & Hernandez, 2003). The resulting matrix of policies is disjointed and incomplete.

The current debate on how best to provide mental health services for children has roots dating back to the 1820s, when American society first considered developing child-specific interventions. Social service professionals at the time began to question whether children at psychiatric hospitals should be placed separately from adults. This shift was accompanied by decisions to separate children from adults in the criminal justice system (Lyons, 2004). One of the first efforts to provide mental health services for children was the entity of court clinics, which emphasized a rehabilitative approach for “wayward” youth that included the first mental health services directed at children. This non-punitive approach to treating youth set the example for future policies in the child welfare and juvenile justice systems as well (Lourie & Hernandez, 2003). Treatment of youth in the criminal justice system at the time was based upon a moral framework; for example, hyperactivity was viewed as an impairment in moral judgment at the turn of the twentieth century (Lyons, 2004).

In the middle of the twentieth century, the frameworks for treatment shifted with the introduction of “child psychiatry,” a focus within psychiatry that gained recognition in the 1930s and further acceptance in the 1950s (Lourie & Hernandez, 2003; Lyons, 2004). The development of child psychiatry indicated recognition of the need to develop knowledge about and treatments for children’s mental health problems (Lyons, 2004). The focus shifted from treatment for children in public agencies to treatment for children in private families (Lourie & Hernandez, 2003). While not specifically focused on children, the Community Mental Health Movement of the 1960s led to the creation of mental health centers that provided services to children and families (Lyons, 2004). The Community Mental Health Movement grew out of the deinstitutionalization movement, the goal of which was to shift the orientation of mental health service delivery from providing long-term services in psychiatric hospitals to providing services in community settings. Demonstration programs that focused on services for children were funded by federal grants through the Community Mental Health Center (CMHC) program in the early 1970s (Lourie & Hernandez, 2003). In 1969, the Joint Commission on the Mental Health of Children issued a report outlining the failures of the mental health system in serving children. The report, Crisis in Child Mental Health, documented children’s involvement with multiple agencies and the fragmented nature of the service system. According to the report, not enough resources or manpower was employed to care for children in need, and only minimal efforts had been made to develop coordinated community services. The report also criticized the system’s overemphasis on treatment rather than prevention and outlined a framework for reform that emphasized prevention. In addition, the Joint Commission called for an increased commitment to optimizing the mental health of children, including the creation comprehensive services available from early infancy through young adulthood, as well as the development of an advocacy system at all levels of government to ensure this goal (Joint Commission on the Mental Health of Children, 1970).

Despite the dire observations of the Joint Commission, no comprehensive reforms to the child mental health system followed. Change, such as it was, was incremental and sometimes in the service of other policy aims. For example, passage of the Education for All Handicapped Children Act in 1975 had an impact on children’s mental health policy by mandating that states provide special education services in the least restrictive environment possible to children with disabilities (Lourie & Hernandez, 2003; Lyons, 2004). The act included “serious emotional disturbances” as a disability condition, and therefore created a mandate for mental health services for children with this specific type of mental health problem (Lourie & Hernandez, 2003).

Twelve years after the Joint Commission report, Knitzer (1982) called attention to the persistent need for more and better coordinated mental health services for children. In her report Unclaimed Children, Knitzer cited results from a survey of mental health services in all 50 states and the District of Columbia. The survey revealed a lack of appropriate services even for those children most in need as well as a lack of coordination among public agencies, a lack of early intervention services, an over-reliance on residential treatment, and a lack of intensive community-based services. States tended to use available funds for the creation of costly institutional placements over the provision of services to children in their homes and communities. Knitzer noted the lack of any federal policies focused on children and adolescents in need of mental health services and the inability of those systems currently in place, such as child welfare, juvenile justice, and schools, to adequately respond to the needs of disturbed children. The dire observations of the report were highlighted through case studies of seriously disturbed children who faced extreme difficulties in receiving appropriate care, while her hopes for reform were illustrated through profiles of innovative programs throughout the country that provided quality care (Knitzer, 1982).

Knitzer (1982) made clear recommendations for how public agencies could “reclaim” their responsibility to provide services to seriously disturbed children. In particular, she recommended that state mental health departments improve procedures used to place children in different types of care, such as through the creation of administrative units for child and adolescent mental health. Other recommendations included that state agencies strengthen protections for seriously disturbed children and adolescents who are in state custody, strengthen connections between child serving agencies, ensure that federal funds are used appropriately, and work with child advocacy groups to increase support for child and adolescent mental health efforts. In addition to these recommendations to state agencies, Knitzer also outlined specific steps that advocacy groups could take to prioritize the needs of disturbed children in their advocacy efforts (Knitzer, 1982).

In response to Unclaimed Children, the National Institute of Mental Health instituted the Child and Adolescent Service System Program (CASSP) in 1984 (Lourie & Hernandez, 2003). This program focused on the system of care approach, which emphasizes the importance of collaboration among community agencies and the concept that children and their families are at the center of multi-agency systems (Knitzer, 1996a; Lourie & Hernandez, 2003). The system of care philosophy was described in detail by Stroul and Friedman (1986) in their report, A System of Care for Severely Emotionally Disturbed Children and Youth. A “system of care” is defined as a comprehensive spectrum of mental health and related services organized in a coordinated network. Such a system of care should be child-centered and community-based, and should encompass the following dimensions: mental health services, social services, educational services, health services, vocational services, recreational services, and operational services. Stroul and Friedman presented strategies that states and communities could use to develop, manage, and assess systems of care for serving emotionally disturbed children (Stroul & Friedman, 1986). In 1992, Congress enacted legislation creating the Comprehensive Community Mental Health Services for Children and Their Families Program, which funded communities developing services using the system of care approach (Knitzer, 1996a; Lourie & Hernandez, 2003).

Several government reports since the passage of the 1992 law have continued to identify challenges to providing mental health services to children in need. A report by the U.S. Surgeon General on mental health in 1999 described risk factors for childhood disorders, outlined prevention programs, and described the diagnosis and treatment options for common disorders in children. The report also presented several troubling findings, including that most children in need of services do not receive them, many who begin treatment terminate services prematurely, poverty status is associated with underutilization of services, and culturally appropriate services are scarce (SAMHSA, 1999). Although not focused exclusively on children, a supplemental report from the U.S. Surgeon General in 2001 discussed the problem of racial disparities in mental health services, documenting that minority populations experience a disproportionately high burden from unmet mental health needs (SAMHSA, 2001a). In a separate 2001 report that was focused on children’s mental health, the Surgeon General presented a blueprint for addressing children’s mental health needs that included the recognition that mental health is a key component of child health, integration of family- and child-centered mental health services into all systems that serve children, and engagement of families and children in the creation of mental health services (SAMHSA, 2001b). An additional report issued by President George W. Bush’s New Freedom Commission in 2003 determined that various barriers, including a lack of coordination among service providers, fragmented services, and the unavailability of services, impede the child mental health system (President’s New Freedom Commission on Mental Health, 2003).

Improvements in child mental health policy have included a movement away from institution-based care towards the system of care, community-based approach, as well as increased attention to the strengths of families and the importance of breaking down racial disparities. Yet, problems persist. The system continues to be based upon a patchwork of policies, and thus remains incomplete.

4. Identifying gaps in the current service delivery system of mental health services available to children and youth

Children’s mental health services are currently delivered through multiple systems, including schools, community health centers, private insurance, public insurance such as Medicaid and the State Children’s Health Insurance Program (CHIP, previously called SCHIP), the child welfare system, and the juvenile justice system. While coordination across these disparate systems is a clear problem, service delivery problems exist within each of these systems. The current section describes the services available to children through these systems, and ways in which this delivery system fails to meet the needs of all of America’s disadvantaged children.

4.1. Services in schools

The most common setting for children to access mental health care services is the school (Stephan, Weist, Kataoka, Adelsheim, & Mills, 2007). Indeed, between 70 and 80% of children who receive services do so in school settings (Williams, Horvath, Wei, Van, & Jonson, 2007). Over 400,000 children and youth between 6 and 21 years of age received services in school settings during the 1996–1997 school year (SAMHSA, 1999). Funding for school-based mental health services comes from various sources, such as the Individuals with Disabilities Education Act (IDEA), the Safer Schools/Healthy Students Initiative, state special education funds, and local funds (Foster et al., 2005).

The Substance Abuse and Mental Health Services Administration (SAMHSA) surveyed a nationally representative sample of public K-12 schools (i.e., respondents selected by principals based on their knowledge of mental health services) and their districts (e.g., superintendents and directors of Special Education) during the 2002–2003 school year to assess the nature of mental health services being provided. Respondents representing 87% of schools reported that they provided mental health assessments, behavior management consultation, and crisis management. Respondents from most schools also reported that they provided referrals to specialized programs (84%), individual counseling (76%), case management (71%), and group counseling (68%). Respondents from nearly all of the schools participating in the survey reported that their school or school district included at least one staff person, such as a counselor, nurse, or psychologist, who spent some time providing mental health services to students. While most schools had hired staff members who provided mental health services to students, many also reported contracting out for these services (Foster et al., 2005).

Schools are an important venue for mental health service delivery to children because services provided in schools reach youth who are unlikely to access services in other settings. For example, ethnic minorities and children with internalizing disorders that are often overlooked, and who are unlikely to access care in specialty mental health settings, often receive services in schools (Stephan et al., 2007). Schools are also considered a gateway for mental health services because teachers play an important role in identifying and providing referrals for children and youth who they believe are in need of care (Williams et al., 2007).

Not surprisingly, schools are unable to meet all of the mental health needs of children. Respondents to the survey conducted by SAMHSA generally reported a higher use of short-term interventions, such as mental health assessments, behavior management consultation, crisis management, and referral for services, than long-term interventions such as counseling and case management. They therefore may not be providing the long-term care that children need. Respondents also reported that funding sometimes restricts the amount and types of services that they can provide. Respondents from 70% of the school districts reported that they view the problem of competing funding priorities to be a moderate or major impediment to the delivery of mental health services in schools (Foster et al., 2005).

4.2. Community-based services

The Comprehensive Community Mental Health Services for Children and Their Families Program (Children’s Mental Health Initiative or CMHI), administered by the Child, Adolescent and Family Branch within SAMHSA’s Center for Mental Health Services, utilizes the system of care approach to provide services for children and youth in mostly poor families. The system of care approach focuses on collaboration among agencies to provide accessible, community-based services in the least restrictive environments possible. Most children served by CMHI have at least one identified risk factor when they begin services (SAMHSA, 2007). Children are served in programs delivered by 140 grantees. Most grantees focus services on the most troubled children and youth (Knitzer & Cooper, 2006).

Community-based services provided through this program include nonrestrictive services such as assessments, case management, crisis intervention, mentoring, transportation, medication monitoring, in-home treatment, and individual, group, and family therapy (as opposed to ‘restrictive’ services such as hospitalization and residential treatment). Most children receiving services through the system of care model receive nonrestrictive services in their first six months of care; three-quarters of children enrolled only receive nonrestrictive, community-based services (SAMHSA, 2007).

Despite a general recognition of the importance of community-based alternatives, current federal funding levels do not reflect this priority. SAMHSA spent more than $4.2 billion on residential treatment in 2002, but only about $400 million on community-based mental health in 2005 (Cooper, 2008). A quarter of the money spent nationally on children’s mental health care is spent on residential treatment, whereas only 8% of treated children receive residential care (Children’s Defense Fund (CDF), 2009).

4.3. Services covered through private insurance

While private insurance sometimes includes coverage for mental health treatment, it often provides less coverage for the treatment of mental illness than for the treatment of general medical conditions (Sundararaman & Redhead, 2008). In response, advocates have fought for mental health parity laws that mandate that insurers cover mental health and general medical services at equivalent levels. These laws are designed to increase access to services and decrease the economic burden incurred by families seeking mental health treatment (Barry & Busch, 2007).

The Mental Health Parity Act, signed into law in 1996, was the first federal mental health parity legislation passed by Congress. Limited in scope, it mandated parity only for annual and lifetime dollar limits for mental health benefits. This law applied only to group plans choosing to offer mental health coverage (Sundararaman & Redhead, 2008). In the absence of full parity federal legislation, several states passed their own parity laws. These laws varied widely, however, as states chose to cover different benefits, diagnoses, and populations in their parity laws (Barry & Busch, 2007). Many states decided to extend parity to a limited number of mental health disorders, often excluding mental health disorders most prevalent among children. California, however, is an example of a state that has specifically included parity for children with serious emotional disturbances in its parity legislation (Peck, 2001).

The first full parity legislation passed by Congress, requiring equal coverage of mental and physical ailments for group health plans, was signed into law in October 2008. After years of advocacy work on behalf of this legislation, the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008 was finally passed by Congress as part of the economic bailout bill (Pear, 2008). Under this legislation, financial requirements and treatment limitations for mental health and substance use disorder benefits can be no more restrictive than those for medical and surgical benefits (Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008, 2008). Insurers can therefore no longer require higher co-payments and deductibles, nor stricter limits on coverage for mental health and substance abuse treatment. While this legislation is groundbreaking, it has a clear limitation — it only applies to group health plans.

4.4. Services through the public health programs — Medicaid and the State Children’s Health Insurance Program

Medicaid and CHIP are publicly-funded health insurance programs financed and managed jointly by the federal government and the states. Medicaid provides access to health care for low-income individuals, including all children under the age of six whose family incomes are below 133% of the federal poverty threshold and all children between the ages of 6 and 18 whose family incomes are below 100% of the poverty line. In addition, CHIP provides health insurance to children whose family incomes are too high to be eligible for Medicaid, but too low to afford private or employer-sponsored health insurance. When CHIP was created in 1997, almost a quarter of all low-income children did not have health insurance (Kaiser Family Foundation, 2007). The program was created as part of the Balanced Budget Act of 1997 to help cover these low-income uninsured children. States have flexibility in determining the eligibility requirements for their CHIP programs. For example, based on 2009 eligibility guidelines, New York and New Jersey cover children if their families have annual incomes up to 400 and 350% of the federal poverty level (FPL), respectively, while Michigan and Texas cover only up to 200% of the FPL (Kaiser Family Foundation, 2009). As of 2009, 21 states set their income eligibility guidelines above 200% of FPL (Kaiser Family Foundation, 2009).

States have some flexibility in developing and operating their CHIP and Medicaid plans based on their funding streams and availability of services (Child Welfare and Juvenile Justice, 2003; Howell, 2004). States decide what services are covered, which providers qualify for reimbursements, and which children are served under their Medicaid plans (Cooper, 2008). There are three ways that states can design their CHIP programs. States can use CHIP funding to expand Medicaid programs to children in families with earnings above the cut-off for Medicaid, develop a separate program with its own benefits separate from Medicaid, or do a combination of the above. Medicaid and CHIP provide health insurance to almost one-fifth (19%) of children in the United States (Child Welfare and Juvenile Justice, 2003). An even greater percentage (50%) of children are eligible for such programs (Howell, 2004).

These public health insurance programs play an important role in providing mental health services to children (Howell, 2004), given the fact that low-income children are eligible for mental health services through Medicaid and CHIP in all states (Robinson, Kaye, Bergman, Moreaux, & Baxter, 2005). While privately insured children generate nearly half of the total costs of mental health care, Medicaid pays for more services per child than private insurers (RAND, 2001). Children with Medicaid generate roughly a quarter of total child mental health care expenditures (Kenny, Oliver, & Poppe, 2002; RAND, 2001).

Although state Medicaid programs have some flexibility in the frequency of screens, Medicaid’s Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) mandate requires states to provide comprehensive and periodic evaluations of children’s physical and mental health to identify conditions in need of treatment (Center for Public Representation, 2005; Medicaid, 2001). The Omnibus Budget Reconciliation Act of 1989 requires states to pay for necessary treatment identified through this screening (Center for Public Representation, 2005; Howell, 2004). All children (under 21 years of age) who are eligible for Medicaid are therefore entitled to this screening followed by comprehensive mental health services if needed (Huber & Grimm, 2004). All children enrolled in CHIP Medicaid expansion programs (but not stand-alone CHIP programs) are also eligible for EPSDT services; the total number of eligible children reached over one million children in 2000 (Medicaid, 2001). Perhaps partly because the Omnibus Budget Reconciliation Act requires states to pay for necessary treatment identified through EPSDT screenings, Medicaid provides more comprehensive coverage than many private plans (Howell, 2004).

Many children who are eligible, including many children in foster care, do not receive the proper mental health care screening to which they are entitled through this program (Huber & Grimm, 2004). Due to the unreliability and incompleteness of state reports, there are no reliable national data on the extent to which children in Medicaid are receiving EPSDT services (Medicaid, 2001). However, according to a report by the General Accounting Office (GAO), findings from smaller studies suggest that many eligible children are not screened through this program (Medicaid, 2001). Furthermore, screenings do not always include a component measuring emotional and behavioral problems; in fact, 23 states do not require or even encourage primary care physicians to screen for behavioral problems in these screenings (Huber & Grimm, 2004). Even children who do receive the proper screening do not always receive the follow-up services they are entitled to under this program (CDF, 2009).

One reason eligible children may not receive proper mental health screenings is that their parents are not informed of the benefits their children are eligible for through the EPSDT program (CDF, 2009; Medicaid, 2001). In its 2001 report, the GAO reported that several advocacy groups they interviewed blamed states and managed care plans for not adequately informing parents about the services for which their children are eligible, culminating in several lawsuits across the country. The GAO suggested that the lack of information may be exacerbated by the finding that parents of children who are eligible for services are less aware of the importance of preventive care than the general population. Many Medicaid beneficiaries also move frequently and have multiple changes in eligibility status, which may hinder the continuity of their care and receipt of these services (Medicaid, 2001). Practitioners may also not have time to conduct proper mental health screenings or they may not be adequately informed about children’s mental health issues. They may also decide not to screen for conditions for which treatment is not available to their patients (Child Welfare and Juvenile Justice, 2003). Furthermore, health professionals may not receive adequate reimbursement for these screenings (CDF, 2009).

Insurance reimbursement standards, such as those utilized by Medicaid, further limit the available services for many children because they include a strong emphasis on the medical model. Up until the 1980s, the mental health profession usually avoided diagnosing children with mental health disorders (SAMHSA, 1999). Due to a change in reimbursement standards in the 1980s, diagnoses are now often needed for children to receive services (CDF, 2009; SAMHSA, 1999). Under this model, mental health disorders are viewed as diseases of the brain, rather than the result of a combination of biological, psychological, and social factors (Shirk, Talmi, & Olds, 2000). Insurance providers, including Medicaid, often do not support treatments that focus on the psychosocial nature of mental health disorders despite research showing that biological factors in combination with psychological and social factors contribute to the development of these disorders (NCCP, 2007; Shirk et al., 2000). Indeed, a recent study found that youth insured through Medicaid were more than three times as likely as children insured through private insurance to be treated with antipsychotic drugs, and that use of antipsychotics is increasing much more rapidly among children on Medicaid than it is among children covered by private insurance (Crystal, Olfson, Huang, Pincus & Gerhard, 2009). Furthermore, Medicaid does not provide reimbursement for many prevention-related interventions and early intervention services (Cooper, 2008; NCCP, 2007). There is often a mismatch between evidence-based treatments and interventions that Medicaid supports (Cooper, 2008). For example, school-based mental health services may not be eligible for Medicaid reimbursement (NCCP, 2007). Though helping to provide many low-income children with services, Medicaid has also limited the types of services children with mental health disorders can receive.

Despite the availability of CHIP and Medicaid, many children remain uninsured. According to one estimate, nine million children are uninsured, and this number is likely increasing. Although CHIP has enrolled nearly 70% of eligible children, 1.8 million eligible children are not enrolled in the program (Urban Institute, 2007). The reauthorization of CHIP, which increased spending and expanded coverage for the program, was signed into law on February 4, 2009. Importantly, the reauthorization included mental health parity for the first time, requiring CHIP programs to provide coverage for mental health treatment at equivalent levels as treatment for other medical conditions (American Psychiatric Association, 2009). Although mental health parity in CHIP was previously discussed in 1997 when Senators Wellstone and Domenici introduced an amendment to include mental health parity in CHIP plans, the amendment was rejected in conference at the time (Sundararaman & Redhead, 2008).

4.5. Services through the child welfare and juvenile justice systems

Although not designed to be primary providers of mental health services, the child welfare and juvenile justice systems have responded to the needs of the children in them by becoming de facto mental health service providers. Even so, mental health services in the child welfare and juvenile justice systems fall far short of the need. Half of children in the child welfare system (50%) and more than two thirds of children in the juvenile justice system (67 to 70%) have mental health problems (NCCP, 2006). Even though all children and youth in the child welfare system are eligible for mental health care through Medicaid, the vast majority of the children and youth who are in need of such care — 85% — do not receive care (Cooper, 2008; NCCP, 2006).

For youth in juvenile justice, less than half who met criteria for psychiatric disorders had received mental health services prior to or even during their involvement with the system (Lopez-Williams, Steop, & Stewart, 2006). Many of these youth with psychiatric disorders may enter the juvenile justice system with an unmet need for services in part because mental health services are scarce in the largely poor neighborhoods in which they grew up. During their involvement with the juvenile justice system, the mental health problems of these adolescents go undetected due to inadequate screening and the lack of comprehensive mental health services in juvenile justice facilities (Rogers, Zima, Powell, & Pumariega, 2001).

Despite the lack of services children receive in these systems, some parents still perceive them as their only avenue for getting free mental health care for their children and thus voluntarily place children in the child welfare or juvenile justice system in order for them to receive care. According to a 2003 report from the GAO,

“Child welfare directors in 19 states and juvenile justice officials in 30 counties estimated that in fiscal year 2001 parents placed over 12,700 children into the child welfare or juvenile justice systems so that these children could receive mental health services”

(Child Welfare and Juvenile Justice, 2003, ii).

This is a startling and disturbing finding, and would be even more so if extrapolated to the national level. Some parents interviewed for the report claimed that they had even physically abused their children in front of child welfare workers or asked the police to arrest their children so that they would be placed in the child welfare or juvenile justice system, where parents hoped their children would receive needed mental health services (Child Welfare and Juvenile Justice, 2003). That parents would intentionally relinquish their children to the child welfare or juvenile justice systems in order for children to get mental health care shows what parents will do out of desperation and concern for their children. Limits in both private and public health insurance deprive children from access to the mental health care they need, and thus parents are faced with the choice of keeping custody of their child but of not being able to properly care for them, or of relinquishing their child in order for him or her to get mental health care (Casey Family Services, 2003). This troubling finding is clearly reminiscent of the parents who used Nebraska’s Safe Haven law loophole to get their children in the care of the state where they would get the mental health care they needed.

While some states allow children to receive services through the child welfare system without parents relinquishing custody of their children, others do not, and most states do not have laws explicitly addressing this issue. According to the GAO report, the majority of youth placed voluntarily by parents in the child welfare and juvenile justice systems were male adolescents with severe mental illness, many of whom exhibited behaviors that threatened their safety or the safety of others. However, the U.S. Department of Health and Human Services does not track the number of children voluntarily placed by parents in the child welfare and juvenile justice system, and thus the true number of children in the system for mental health reasons as well as their outcomes are not known (Child Welfare and Juvenile Justice, 2003).

5. Barriers to access of children’s mental health services

Parents generally, and low-income parents in particular, face considerable barriers to accessing mental health care for their children. Parents who relinquished custody of their children to the child welfare or juvenile justice systems cited a host of barriers that prevented them from securing mental health care for their children, including limitations in their insurance coverage, shortages of services available for their children, difficulty accessing services, and misunderstandings about different agencies’ responsibilities in serving children (Child Welfare and Juvenile Justice, 2003). Additional barriers cited by parents include a lack of information about available services and benefits to which their children are entitled, as well as when it is appropriate to seek care, difficulty finding mental health care providers, fear of the stigma associated with accessing care, and a distrust of ‘the system’ (CDF, 2009).

5.1. Lack of information about available services and when to seek care

Parents have difficulties both locating and accessing care for their children, often due to a lack of information about available mental health services, as well as uncertainty as to when to seek care (Huang et al., 2005; Palmer, Courtot, & Howell, 2007). For example, as described above, parents are often unaware of mental health services available through the EPSDT program (CDF, 2009). Many low-income parents in particular are also uncertain as to whether their children are even in need of services (Palmer et al., 2007). Different racial and ethnic groups have differing perspectives regarding when it is appropriate to seek care from professionals (CDF, 2009).

5.2. Difficulties due to a shortage of providers

Another obstacle to accessing care is the limited number of mental health care providers. Nationwide, there is a shortage of providers in child psychiatry and most children’s mental health care providers are unable to prescribe medication (Pfefferie, 2007; Thomas & Holzer, 1999). Partly due to the shortage of providers, an estimated 40% of children with mental health disorders receive their mental health care from their pediatricians (Pfefferie, 2007). This is an especially significant barrier for children in rural areas and areas with a high percentage of children living in poverty. The more rural a county is or the higher the percentage of children in poverty residing in that county, the fewer child psychiatrists there are available, even relative to the number of youth in these areas (Thomas & Holzer, 1999).

5.3. Fear of stigma and distrust of the system

Stigma is also a significant barrier for children in need of mental health care. Parents are often reluctant to seek help from professionals because they think they will be blamed for their children’s problems. Meanwhile, children often fear that they will be stigmatized by their peers if their mental health problems are identified. This stigma is even greater among children of color who already suffer from discrimination (Gonzalez, 2005). Distrust of health care providers poses additional barriers to obtaining care for some parents. Parents who do not have consistent access to the same pediatrician for their children, and thus do not have a chance to build a trusting relationship with a single pediatrician, may be more reluctant to discuss their children’s mental health issues with providers (CDF, 2009). Parents without proper legal documentation may also fear that their legal status will be discovered if they access services for their children (Palmer et al., 2007).

5.4. Financial and logistical obstacles

Financial obstacles also pose a significant barrier for parents trying to access care for their children, especially low-income parents. Approximately 7% of families in a study conducted by a team of researchers from RAND (2001) reported that financial barriers prevented them from getting their children the mental health care services they need. For families who are ineligible for public programs, but do not have access to private insurance, services are sometimes impossible to afford (SAMHSA, 1999). Even for families with insurance, out-of-pocket costs, such as the cost of transportation to services, can be difficult if not impossible to bear. Parents also face various logistical barriers to accessing care for their children, which may be exacerbated for low-income parents. For example, employed parents are sometimes unable to take time off from their jobs to take their children to their appointments (Gonzalez, 2005). It can also be time-consuming and expensive finding transportation to services and arranging child care for their other children (CDF, 2009; Gonzalez, 2005).

6. The future of children’s mental health services: proposed changes to the current system

There is a large unmet need for children’s mental health services in the United States. In order to meet this need, the current incomplete and fragmented system must be restructured with the aim of breaking down the multiple barriers to accessing care, especially for children in low-income families. As illustrated by the multiple problems and barriers described above, we need not only incremental changes to the system but large paradigm shifts as well. Based on our review, we make the following recommendations:

1). Focus on prevention and early intervention, especially for children in low-income families

As with interventions to promote physical health, interventions to promote mental health and to prevent mental and emotional problems can be effective for the individual and cost-effective for the payer. A paradigm shift towards prevention and early intervention is needed. There are a large number of interventions designed to prevent mental health problems and concomitant behavioral problems in children, several of which have been documented to be successful through randomized trials. One such program is Fast Track, an intervention designed to reduce mental health problems in a sample of children identified as at risk of developing conduct disorders. The program has a statistically significant positive effect on preventing externalizing psychiatric disorders and antisocial behavior, though only for the highest risk group of participants (Conduct Problems Prevention Research Group, 2007). Similarly, an evaluation of the Incredible Years Teacher Classroom Management and Child Social and Emotion curriculum, used as a universal prevention program for children enrolled in Head Start, kindergarten, or first grade classrooms in schools with high rates of poverty, demonstrated a positive effect in reducing conduct problems. Children who were at highest initial risk benefited most from this intervention (Webster-Stratton, Reid, & Stoolmiller, 2008).

A focus on prevention should also entail increased early identification of problems. Early screening should better identify children with disorders, such as depression, that are easily overlooked. In particular, states need to do a better job of implementing the EPSDT program, both through state-level funding to supplement federal funding and through increased efforts to improve access to and utilization of the program. It is also crucial that states do a better job of informing parents about the diagnostic and treatment options their children are entitled to receive. Effective settings for distributing such information would be schools, child care centers, and pediatricians’ offices.

Prevention and early intervention are likely the best hope for reducing the number of children with mental health problems as well as reducing the number of children who do not receive treatment for mental health problems they have. However, given findings summarized above that poverty is a strong risk factor for the development of mental health disorders in children and youth, it may be necessary to focus efforts on eliminating child poverty in the U.S. in order to eliminate the source of so many problems in children’s lives.

2). Increase stable services provided in easily accessible, low-stigma settings

In order to increase the likelihood that children and parents will feel comfortable seeking care and continuing with care, mental health screenings and treatment should be provided in easily accessed, low-stigma settings. For example, there should be better access to stable services (including long-term interventions) in schools, which are considered less stigmatizing than other treatment settings. There should be a focus on stable services provided in the home, utilizing the family-based wrap-around approach, which focuses on the strengths of children and support from family members. It is also important that services are readily available in communities with a high prevalence of violence. Community-based centers, which would allow youth to live at home while receiving treatment, would avoid at least some of the stigma associated with treatment at residential treatment centers, as well as be more convenient for families to utilize. In general, a greater focus must be placed on community-based alternatives for the provision of mental health care, rather than on treatment in hospitals and emergency rooms as in the current system.

3). Provide better coordination across the service systems and better access to services in systems in which children are already involved

Agencies and service providers across the many systems that serve children with mental health needs should coordinate with one another so that fewer children fall through the cracks of these systems, and all children in the child welfare and juvenile justice systems should receive the care they need. As noted above, more services should also be provided in schools, an ideal setting for a universal approach.

To put an end to parents having to relinquish their children to the child welfare or juvenile justice system in order for them to get mental health care, states should create a mechanism by which parents can voluntarily and temporarily relinquish custody of their children to the state when children are in need of intensive mental health services. As one parent observed based on her own experience,

“We need to have voluntary foster care… the idea of giving up custody to get my child’s needs met is fundamentally wrong… relinquishment of custody nearly broke my heart”

(Casey Family Services, 2003, p. 29).

A more coordinated and better resourced mental health system across the U.S. would prevent parents from ever again having to make the difficult choice this parent made.

4). Restructure the insurance system, moving it away from the traditional medical model of treatment

Another shift should be away from using the medical model to treat children with mental health needs, towards a universal, preventive approach. In order to do so, the reimbursement system should be restructured so that it includes preventive treatment of children who do not meet diagnostic criteria for disorders. Rather than the medical model of treatment, the reimbursement system should be based on a public health model, utilizing a universal approach rather than an individual focus. This universal framework lends itself well to preventive measures.

5). Conduct research to better track outcomes for children in the systems that serve them

The fragmented nature of the children’s mental health care system makes it difficult to assess both what services are being provided and how these services are benefiting children. A better understanding of the outcomes for children receiving services would help to identify methods that work, as well as help us better understand the gaps in the system that need to filled.

6). Include the voices and perspectives of children with mental health needs and their families in discussions on how to improve the current system

This includes providing a mechanism for children with mental health needs and their families to speak directly to policymakers, sharing the gaps and barriers they face in the current system. Researchers have emphasized the importance of capturing the experiences of those with mental health problems, including children, to better understand the stigma associated with mental illness (Hinshaw, 2005; Link & Phelan, 2001; Wahl, 1999). It is also important to capture children’s perspectives regarding the challenges they face in receiving the care that they need and their opinions regarding how to improve the system that has thus far failed so many of them. The children themselves should have a voice in this discussion.

7. Conclusion

It says much about the dysfunctional nature of the current child mental health system that parents continue to relinquish custody of their children to what they know are the already taxed child welfare and juvenile justice systems but do so in the hope that their children will receive needed mental health care that the parents themselves can no longer procure. While there are some small signs of improvement, such as the recent establishment of mental health parity legislation, there are still many gaps in the current system for providing mental health services to children. The current service delivery system is fragmented and incomplete. Although schools are often a key mental health resource for children, shortages in funding have meant that even schools fall short of providing the long-term interventions that many children need. There is also a shortage of community-based alternatives for children to supplement the school-based care that is offered. Moreover, many children eligible for services through public insurance programs, such as Medicaid, fail to receive the services they need.

This fragmented system leaves large gaps through which children in need of services continue to fall. It is imperative that we restructure this system to better serve children. Much needs to be done to break down the barriers to accessing care, especially for children in low-income families, and to reach the children whose needs have gone unidentified and thus far unmet. Large paradigm shifts are needed, and the voices of children with mental health needs and their families must be heard. We must act now to catch the children who have thus far fallen through the cracks of this broken system.