The focus of this section is on service systemstheir origins, nature, and financing and also their effectiveness, delivery, and utilizationrather than on individual interventions and treatments, which were covered in previous sections of this chapter.
About 20 years ago it became clear that children and families were failing to receive adequate care from the public sector, whose services were fragmented, inadequate, and overreliant on institutional care. As a result, the emphasis of service delivery has shifted to systems of care that are designed to provide culturally competent, coordinated services; community-based services; new financing arrangements in the private and public sectors; family participation in decisionmaking about care for their children; and individualized care drawing on treatment and social supports called wraparound services, described above. Thus, there has been progress in transforming the nature of service delivery and its financing, but the central question of the effectiveness of systems of care has not yet been resolved.
At the outset, it is important to note that while systems of care are designed to provide the appropriate level of services for all children, it is children with serious emotional disturbances, particularly children who are involved in multiple service sectors, who are likely to benefit the most. There are approximately 6 million to 9 million children and adolescents in the United States with serious emotional disturbances (Friedman et al., 1996a; Lavigne et al., 1996), accounting for 9 to 13 percent of all children (Friedman et al., 1996a; Friedman et al., 1998).
The system for delivering mental health services to children and their families is complex, sometimes to the point of inscrutabilitya patchwork of providers, interventions, and payers. Much of the complexity stems from the multiple pathways into treatment and the multiple funding streams for services. However, once care has begun, the interventions and settings themselves are generally the same as those covered in previous sections of this chapter.
This section presents research findings about the utilization of mental health services by children and adolescents. The foremost finding is that most children in need of mental health services do not get them. Another finding refutes the common perception that children who do not need specialty mental health services are more likely to receive such services than those who really do need them. This section also discusses childrens high dropout rates from treatment and the significance of this problem for children of different cultural backgrounds.
Utilization in Relation to Need
Studies do, however, demonstrate a clear and strong relationship between use of services and presence of a diagnosis and/or presence of impaired functioning. In the study by Leaf and colleagues (1996), young people with both a diagnosis and impaired functioning were 6.8 times more likely to see a specialist than were those with no diagnosis and a higher level of functioning.
The study by Burns and colleagues also showed where children were receiving treatment. Of those who received services and had both a diagnosis and impaired functioning, about 40 percent received services in the specialty mental health sector, about 70 percent received services from the schools, about 11 percent from the health sector, about 16 percent from the child welfare sector, and about 4 percent from the juvenile justice sector. For nearly half the children with serious emotional disturbances who received services, the public school system was the sole provider (Burns et al., 1995). After reviewing these findings and the findings from other studies, Hoagwood and Erwin (l997) also concluded that schools were the primary providers of mental health services for children.
Early Termination of Treatment
There are a number of effective interventions to reduce dropout from treatment and to increase enrollment and retention (Szapocznik et al., 1988; McKay et al., 1996; Santisteban et al., l996). Offering services in the schools improves treatment access (Catron & Weiss, 1994). A variety of case management approaches can also improve engagement of low-income families in the treatment of their children (Burns et al., 1996; Koroloff et al., 1996a; Lambert & Guthrie, 1996).
Poverty and Utilization
Culture and Utilization
The task of understanding treatment patterns is made even more difficult because there are racial and ethnic differences in family preferences and family-initiated patterns of help-seeking (see also Culturally Appropriate Social Support Services). For example, parents from various cultural backgrounds have been found to differ in the degree to which they identify child behavioral and emotional problems as disturbed (Weisz & Weiss, 1991). Differences also have been found across cultural groups in their beliefs about whether these child problems are likely to improve in the absence of professional support. Weisz and Weiss (1991) have also identified cultural differences in the power of various childrens behavioral and emotional problems to motivate a parents search for professional help.
Differences also arise indirectly from the multiplicity of service systems with authority and responsibility for protecting the well-being of children. These systems have different criteria for initiating treatment and different patterns of utilization. African American children and youth are considerably more likely than those of other ethnic groups to enter the child welfare system (National Research Council, 1993). Their greater chances of having parents compelled to surrender them or of suffering abuse or neglect lead them in greater numbers to be referred to child welfare authorities, to be placed out-of-home, and to be involved with the child welfare system longer. Studies in one California county have found that African American youths are overrepresented in arrests, detention, and incarceration in the juvenile justice system, and in the schools they are overrepresented in educational classes for the severely emotionally disturbed. Hispanic/Latino children and youths are no more likely than whites to come under supervision of the child welfare system but, once involved, remain longer. They are also more likely than whites to be detained in juvenile justice facilities (McCabe et al., 1998).
As a group, Hispanic/Latino and African American children more often leave mental health services prematurely than do Caucasian children (Sue et al., 1991; Bui & Takeuchi, 1992; Takeuchi et al., 1993; Viale-Val et al., 1984). Many factors contribute to premature termination, such as insensitivity of mental health providers to the culture of children and families (Woodward et al., 1992). In general, even after demonstrated success with middle-class Caucasians, mental health treatments should not be applied without culturally appropriate modification to people from other cultures and races (Rosado & Elias, 1993).
Specialized programs and supports linked with the culture of the community being served have been found to be successful in promoting favorable patterns of service utilization for all ages (Snowden & Hu, 1997). It is becoming clear that the children and families served by mental health programs designed to be linked to community cultures are less likely to drop out of treatment compared with similar families in mainstream programs (Takeuchi et al., 1995). For example, Asian American children at an Asian community- or culture-focused program were found to use more services, drop out less often, and improve more than did Asian American children at mainstream programs (Yeh et al., 1994).
In summarizing the relationship between race and ethnicity, need for service, and use of service, Isaacs-Shockley and colleagues (1996) raised the concern that minority children are less likely to receive the care they need than nonminority childrena concern that should energize advocacy for the development of systems of care tailored to the needs of distinct cultures (Cross et al., 1989; Hernandez & Isaacs, 1998).
In the past, mental health services paid for by the private sector were viewed as separate entities from those funded by the public sector, particularly since the public sector only paid for services that it itself delivered. As this section explains below, the distinction between public and private sectors has been blurred by the advent of publicly supported payment systems such as Medicaid and grants of public funds to private organizations and providers. Now in the public sector, services are paid for with governmental resources but delivered either by public or private organizations in institutional or community-based settings.
When children and adolescents have complex and long-term mental health problems, required services are not usually covered by private sector insurance plans. Families must either pay for the services themselves or obtain the services through the public sector. In many states, parents are forced to give up custody of their children to the state child welfare system in order to obtain needed residential services (Cohen et al., 1991). This unfortunate choice results from a limited supply of public sector services and special requirements for gaining access to them.
Over the past decade, managed care has become a major payer for private health care. Managed care provision of mental health services emerged partially in response to the overutilization of costly inpatient hospitalization by adolescents in the 1980s (Lourie et al., 1996). The purpose of managed care has been to control spiraling mental health service costs, mostly by limiting hospital stays and rigorously managing outpatient service usage (Stroul et al., 1998). Managed care can offer advantages in terms of cost-effective services to meet the needs of children with flexible benefits. It may also lead to denial of needed treatment. While its potential negative effect on the efficacy of mental health care delivered under its aegis is a hotly debated issue, for the most part managed care furnishes the same traditional services available under fee-for-service insurance. The drive for efficiency, however, has led to the introduction of intermediate services designed to divert children from hospitalization. Managed care has shortened hospital stays and increased the use of short-term therapy models (Eisen et al., 1995; Merrick, 1998). Managed care also has lowered reimbursements for services provided by both individual professionals and institutions. This has been accompanied by the construction of provider networks, under which professionals and institutions agree to accept lower than customary fees as a tradeoff for access to patients in the network.
Medicaid is a major source of funding for mental health and related support services. For the most part, Medicaid has supported the traditional mix of outpatient and inpatient services. However, unlike private sector insurance, Medicaid also funds long-term services for those children who need more intensive or restrictive services, often through hospitalizations and residential treatments. Some states cover in-home services, school-based services, and case management through a variety of Medicaid options. Medicaid also supports the Early Periodic Screening, Diagnosis, and Treatment (EPSDT) program.
Trapped between the private and public sectors is a group of uninsured individuals and families who do not qualify for the public sector programs, cannot afford to pay for services themselves, and have no access to private health insurance. The American Academy of Pediatrics estimates that in 1999 there will be 11 million uninsured children, about 3 million of whom do not qualify for existing public programs (American Academy of Pediatrics website www.aap.org). State and local mental health authorities fund some mental health services for these children, often offered through the same community mental health centers that are funded by Medicaid. Mental health departments in some jurisdictions also fund a broader array of mental health services than the traditional acute service package. These intermediate services include intensive case management with and without individualized wraparound provisions, early intervention programs, crisis stabilization, in-home therapy, and day programs. Since there has never been a mandate to states to provide mental health services to children and adolescents, the state or local support for such services has been variable. Thus, one might find a well-supported, innovative array of mental health services for children in one state or community, and almost no services in the next. The new State Child Health Insurance Program (CHIP) is an attempt by Congress to address the health care needs of low-income, uninsured children. States have great flexibility in their approach to coverage, and it remains to be seen how they will deal with mental health services.
States and communities have sweeping mandates to serve children and adolescents in schools and under child welfare and juvenile service auspices. Many of these state and community programs, however, lack the expertise to recognize, refer, or treat mental health problems that trigger mandated services. When they do recognize problems, some of the needed mental health services are paid for by Medicaid, by the federal Maternal and Child Block Grant, or by a state or local mental health authority; often, however, they are not. Under these circumstances, the school, welfare, or juvenile justice agency ends up paying the bill for the mental health services.
Under the Federal special education law, the Individuals with Disabilities Education Act (IDEA; see also New Roles for Families in Systems of Care), school systems are mandated to provide special education services to children and adolescents whose disabilities interfere with their education. When these disabilities take the form of serious emotional or behavioral disturbances, school systems are required to respond through assessment, counseling, behavior management, and special classes or schools. When school systems lack sufficient capacity to meet such needs directly, school funds are used to send children and youths to specialized private day schools or to long-term residential schools, even if such schools are out of the childs state or community. In this way, school systems support an extensive array of mental health services in the public and private sectors.
Preschool children with developmental and emotional disabilities are covered by some state and local legislation. Services for them also are mandated under IDEA. Whereas some states coordinate this education-based mandate through school systems, others administer the preschool programs through mental health or developmental disability agencies, an interagency coordinating body, or other state agency.
Child welfare agencies in states and communities also have powerful mandates to protect children and to ensure that they receive the services they need, including mental health services. Child welfare agencies primarily serve poor children who are separated from their parents because they are orphaned, abandoned, abused, or neglected. Although many mental health services are provided either under Medicaid or through state and locally supported community mental health centers, many are not and are paid for directly by child welfare agencies. This happens most often when children and adolescents have severe, complicated conditions. As with education agencies, when funding is not available through Medicaid or other mental health funds, child welfare agencies directly pay for group home care, therapeutic foster care, or residential treatment.
The same is true for juvenile justice agencies, which have strong mandates to protect children and the public. Many children and adolescents in the juvenile justice system have serious mental health problems. Beyond the more traditional training schools and detention centers, run by state and local juvenile authorities, respectively, these agencies also purchase care from the same group home, therapeutic foster care, and residential providers as do child welfare agencies.
Children Served by the Public Sector
Two recent review articles examined the characteristics of children served in public systems. Based on an appraisal of six prior studies, it was concluded that, in addition to emotional and behavioral functioning, these young people have problems in life domains such as intellectual and educational performance and social and adaptive behavior (Friedman et al., 1996b). Frequently, such children and their families have contact not only with the mental health system, but also with special education, child welfare, and juvenile justice (Landrum et al., l995; Duchnowski et al., l998; Greenbaum et al., l998; Quinn & Epstein, l998).
It is estimated that in a 1-year period more than 700,000 children nationwide are in out-of-home placements, mostly under the supervision of either the child welfare or to some extent the juvenile justice system (Glisson, 1996). Also, during the 19961997 school year more than 400,000 emotionally disturbed children and youths between the ages of 6 and 21 were served in the public schools nationwide (U.S. Department of Education, 1997). This is just under 1 percent of the school enrollment for ages 6 to 17, and 8.5 percent of all children with disabilities receiving any kind of special education service (Oswald & Coutinho, l995; U.S. Department of Education, 1997). These figures and percentages have remained relatively constant since national data were first collected about 20 years ago, although there are great variations between states. For example, in 19921993, 0.4 percent of school-enrolled children in Mississippi were identified as having a serious emotional disturbance compared with 2.08 percent in Connecticut (Coker et al., l998).
In addition to children with a serious emotional disturbance served by the special education system, children served by child welfare and juvenile justice systems also have need for mental health services (Friedman & Kutash, l986; Cohen et al., l990; Greenbaum et al., 1991, l998; Otto et al., l992; Glisson, 1996; Claussen et al., 1998), because they are much more likely to have emotional and behavioral disorders than is the general population (Duchnowski et al., 1998; Quinn & Epstein, 1998). Thus, the emphasis on interagency community-based systems of care is warranted and essential (see Integrated System Model).
Managed Care in the Public Sector
Advocates express concern that the restrictions of public managed care on mental health services shift costs of diagnosis and treatment to other agencies, a process known as cost-shifting. Under public managed care, hospitalization for mental disorders is being substantially cut, with youths being discharged from the hospital before adequate personal and/or community safety plans can be instituted. Child welfare and juvenile justice agencies have been compelled to create and pay for services to support those children who are no longer kept in hospitals. Thus, while Medicaids mental health costs may be decreasing in such cases, there may be a substantial cost increase to the other agencies involved, resulting in little if any overall cost saving (Stroul et al., 1998).
Similarly, management of only the Medicaid portion of a complex funding system that includes Medicaid, mental health, special education, child welfare, and juvenile justice funds not only creates the cost-shifting described above, but also underestimates the need to manage the funds spent by all agencies. Demonstration programs of managed care strategies for children and adolescents with severe emotional disturbances have included the creation of an interagency funding pool, shared by all affected agencies, to meet the full range of needs of this population. Under the demonstration program, the funds in such a pool are capitated to ensure that the most appropriate services are purchased, regardless of which agencys mandate they come under. In this way, long-term, complex care can be offered in an efficient way that reduces costs for all of the involved child and youth agencies.
An excellent example of an approach in a managed care setting is Wraparound Milwaukee, one of the Center for Mental Health Services Comprehensive Community Mental Health Services for Children and Their Families Programs (Stroul et al., 1998; Goldman & Faw, 1998). Wraparound Milwaukee, a coordinated system of community-based care and resources for families of children with severe emotional, behavioral, and mental health problems, is operated by the Children and Adolescent Services Branch of the Milwaukee County Mental Health Division. The features of this care management model are a provider network that furnishes an array of mental health and child welfare services; an individualized plan of care; a care coordinator management system to ensure that services are coordinated, monitored, and evaluated; a Mobile Urgent Treatment Team to provide crisis intervention services; a managed care approach including preauthorization of services and service monitoring; and a reinvestment strategy in which dollars saved from decreased use of inpatient or residential care are invested in increased service capacity.
Since its inception in 1994, one of the goals of the program has been to blend funding streams. Wraparound Milwaukee operates as a behavioral health care carve-out that blends funds from a monthly capitation rate from Medicaid, a case rate from county child welfare and juvenile justice funds, and a Center for Mental Health Services child mental health services grant. The Wraparound Milwaukee capitated rate of approximately $4,300 covers all mental health and substance abuse services, including inpatient hospitalization. Additional funds from child welfare and/or juvenile justice are used for children with serious emotional disturbances in the child welfare and juvenile justice systems in Milwaukee County to cover residential treatment, foster care, group home and shelter care costs, and nontraditional mental health community services (e.g., mentors, job coaches, after-school programs). Wraparound Milwaukee is at full risk for all services costs, meaning it is responsible for charges in excess of the capitated rate. The average monthly costs, including administrative costs, are $3,400 per child. Medicaid-eligible children constituted 80 percent of the population served by the program in 1998.
One of the fundamental requirements of culturally appropriate services is for mental health providers to identify and then to work in concert with natural support systems within the diverse communities they serve (Greenbaum, 1998). (Background information on cultural diversity and culturally competent services is provided in Chapter 2.) If they are culturally appropriate, services can transcend mental healths focus on the identified client to embrace the community, cultural, and family context of a client (Szapocznik & Kurtines, 1993; Hernandez et al., 1998). According to Greenbaum (1998), considering a clients context is important because people who live close to each other frequently have developed ways of coping with similar personal problems. Becoming aware of these natural systems and adapting formal services to be congruent with them are ways to make services more accessible and useful to diverse populations.
Community- and neighborhood-based social net- works act as important resources for easing emotional stress and for facilitating the process of seeking professional help (Saunders, 1996). Often natural social supports ameliorate emotional distress and have been found to reduce the need for formal mental health treatment (Linn & McGranahan, 1980; Birkel & Reppucci, 1983; Cohen & Wills, 1985). According to Saunders (1996), obtaining social support is not a single event but rather an ongoing process. In general, people use their neighborhood and familial supports many times before they decide they have a problem and determine what type of help they will seek (Rew et al., 1997). A key to the success of mental health programs is how well they use and are connected with established, accepted, credible community supports. The more this is the case, the less likely families view such help as threatening and as carrying stigma; this is particularly true for families who are members of racial and ethnic minority groups (Bentelspacher et al., 1994).
Minority parents are more likely than nonminority parents to seek input regarding their children from family and community contacts (Briones et al., 1990; Hoberman, 1992). In a study by McMiller and Weisz (1996), two-thirds of the parents of minority children did not seek help from professionals and agencies as their first choice. For example, in Hispanic/Latino families, important decisions related to health and mental health are often made by the entire family network rather than by individuals (Council of Scientific Affairs, 1991). According to Ruiz (1993), health care settings that are not modified to work with Hispanic/Latino family networks find that their clients do not comply with medical advice; as a result, their health status can be compromised.
In sum, mental health programs attempting to serve diverse populations must incorporate an understanding of culture, traditions, beliefs, and culture-specific family interactions into their design (Dasen et al., 1988) and form working partnerships with communities in order to become successful (Kretzman & McKnight, 1993). Ultimately, the solution offered by professionals and the process of problem resolution or treatment should be consistent with, or at least tolerable to, the natural supportive environments that reflect clients values and help-seeking behaviors (Lee, 1996).
Such partnerships sometimes fail, however, because they concentrate on neighborhood and community problems. According to Kretzman and McKnight (1993), this approach often reinforces the negative stereotypes of violent, drug- and gang-ridden, and poverty-stricken communities. A more effective alternative approach to working with communities is to focus on community strengths (Kretzman & McKnight, 1993). This approach works best when community residents themselves are interested in participating in the partnership. Mental health providers who approach minority communities in a paternalistic manner fail to engage residents and fail to recognize whether the community wants their assistance (Gutierrez-Mayka & Contreras-Neira, 1998). Service providers who attend to the wishes of community residents are more likely to be respectful in their delivery of services, a respect that is a prerequisite to cultural responsiveness and competence in service planning and delivery to diverse communities (Gutierrez-Mayka & Contreras-Neira, 1998).