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Book Title: Treating and Preventing Adolescent Mental Health Disorders  > pp. [550]-[554]
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counted for the response. This component of the intervention—a feature of its content—is critical to reducing reported childhood fears and anxiety responses. Other factors that reside outside of the content of specific EBPs also influence outcomes. Such factors might include degree or intensity of clinical supervision, or an organization's support for employees. These factors of context are beginning to be examined. For example, Henggeler, Schoenwald, Liao, Letourneau, and Edwards (2002) describe the positive relationship between model-consistent clinical supervision and a therapist's fidelity to multisystemic therapy (MST). Supervision consistent with the MST approach is also positively related to clinical improvement. New studies just beginning to be undertaken in the field of child and adolescent mental health services are examining how systemic features, such as organizational leadership, work attitudes, and climate, may explain variance in the quality of provided services (e.g., Glisson & James, 2002).
Another type of context factor that limits the ability to disseminate EBP models is the small number of studies on the cost-effectiveness of these models. In fact, in mental health, those empirically based interventions that currently have the widest dissemination are also those that have had cost-effectiveness data to support their impact relative to usual care prior to wide-scale promotion (e.g., functional family therapy, Alexander & Parsons, 1973; multisystemic therapy, Henggeler, Schoenwald, Rowland, & Cunningham, 2002; nurse visitation model, Kitzman, Olds, Sidora, Henderson, Hanks et al., 2000). The paucity of studies on the cost-effectiveness of service or treatment models seriously limits the adoption by policymakers of these interventions. These studies are labor-intensive and costly and require careful delineation of the service or treatment components.
Another kind of problem in the spread of empirically based practices occurs because of the rapidity with which knowledge about effective practices is being deployed, coupled with the dearth of knowledge about how best to implement them. This problem has become a kind of catch-22 for the field (Hoagwood et al., in press). The problem arises when treatment developers or organizations not affiliated with the development and testing of a particular treatment model design strategies to take that model to scale. Considerable resources are required to design strategies for overcoming the obstacles enumerated above—for example, in strengthening the capacity of clinicians to implement a model with fidelity. Yet resources must be expended in advance in order to garner research funding for assessing the impact of those strategies (Schoenwald & Henggeler, 2002; Torrey et al., 2001). Thus, although several groups of treatment and service developers have produced similar multilevel approaches to the problem of taking an effective model to scale (Schoenwald & Henggeler, 2002), the methods used to do so have been idiosyncratic, bootstrapped, and informed as much by field experience as by theory and research on the diffusion of innovation, technology transfer, and organizational behavior.
SYSTEM BARRIERS
In the mid-1980s a series of federal and state initiatives focused on strengthening the community-based service system for children and adolescents. Called the Child and Adolescent Service System Program (CASSP), a group of state grants were awarded by the NIMH to create youth and family bureaus within state systems. This initiative was given principled footing through the development of an influential model, called the System of Care (Stroul and Friedman, 1986). This model articulated a series of values, centered around maintaining children within their communities, coordinating services, involving families integrally in delivery and planning of treatments and services, and attending to the cultural relevance of services. The most recent iteration of the model has been under an important federal initiative designed to support local community-based services for children and adolescents. Called the Comprehensive Community Mental Health Services for Children and Families (CMHSC) and supported by the Center for Mental Health Services (CMHS) of the Substance Abuse and Mental Health Services Administration (SAMHSA), this program consti
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tutes the single largest federal program supporting mental health services for youth with serious emotional or behavioral problems. The program is currently financed at close to $100 million per year. One major focus of this program in recent years has been the inclusion of EBPs into the local community-based programs.
Despite the importance of this program, it exists only in a small percentage of communities in the United States. As a consequence, most families seeking mental health care do not have access to these federally funded programs and instead face significant system barriers in accessing effective treatment models. Some of these barriers are outlined below.
Fragmentation
Many sectors are involved in delivering services for children, adolescents, and their families, a characteristic that makes them cumbersome to study. In general, at least six separate sectors or administrative structures may be involved in serving youth with mental health problems: specialty mental health; primary health care; child welfare; education; juvenile justice; and substance abuse (Stroul & Friedman, 1986). Across most of the United States, these sectors are administratively, fiscally, and structurally distinct. As a consequence, the responsibility for providing services for a youth with mental health problems or for his or her family is divided among different agencies, each with a unique set of regulations, intake procedures, rules for inclusion and exclusion, and service options. This fragmentation creates enormous problems for families whose children often need different kinds of services for different kinds of problems (Burns, 2003; Burns et al., 1995; Friedman, 2003).
Studies of the impact of coordinated models for delivering services to youth with mental health problems have found that integrated models improve access to care, reduce restrictiveness of placements (e.g., reduce in-patient stays), and improve family satisfaction (Bickman, 1996a, 1996b). However, these same studies have found that these integrated models do nothing in the way of improving clinical out comes, and concerted calls for improving the clinical care that can be embedded within coordinated systems models have been made repeatedly (Burns, 2003; Henggeler, Schoenwald, & Munger, 1996; Hoagwood, Hibbs, Brent, & Jensen, 1995; Hoagwood, Jensen, Petti, & Burns, 1996).
Access
Underrecognition of youth mental disorders is well documented across all ethnic and racial groups (Costello et al., 1996; DHHS, 1999; Horwitz, Leaf, & Leventhal, 1998; Horwitz, Leaf, Leventhal, Forsyth, & Speechley, 1992; Lavigne et al., 1993; National Advisory Mental Health Council, 2001; Attkisson & Rosenblatt, 1998; Fisher, Dulcan, Davies, Piacentini et al., 1996; Roberts, 1998, Shaffer, 1999; USPHS, 2001a, 2001b). Current evidence suggests that these difficulties disproportionately affect minority youth and families because they are also less likely to have access to general health-care services (DHHS, 1999; USPHS, 2001b). The recent supplement to the Surgeon General's Report on Mental Health, Culture, Race, and Ethnicity (USPHS, 2001c) notes that the disparities affecting mental health services for racial and ethnic minorities have several key characteristics, namely that minorities (1) have more barriers and less access to mental health services, (2) are less likely to receive needed mental health services, (3) often receive a poorer quality of services, and (4) are underrepresented in studies of mental health. Minority parents are at further disadvantage because they and their children are exposed to proportionately greater levels of strains and risks under normal day-to-day conditions, all of which are increased even further when they must deal with a child with emotional or behavioral disabilities (Leaf et al., 1996).
The cumulative impact of lack of access to mental health services, higher levels of risk factors, and historical and current societal discriminatory attitudes place these children on a dangerous trajectory that can lead to more serious emotional or behavioral problems later in life (Loeber & Farrington, 1998; USPHS, 2000). Fur
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thermore, studies have documented that less than one third of children with suicide ideation, conduct disorder, and substance abuse or dependency seek or receive help for these problems, and that less than half of youth with major depression seek or receive help for depression (Stiffman, Earls, Robins, & Jung, 1988). By necessity, access to mental health services for youth usually depends on the recognition and actions of key adults (Pescosolido, 1992; Stiffman, Chen, Elze, Dore, & Cheng, 1997), some of whom themselves may suffer from mental health problems. Other barriers such as stigma, lack of availability of services, lack of specialists, long waiting lists, and lack of insurance also impede use of services.
According to numerous recent reports and studies (Kataoke et al., 2002; USPHS 2001a; NIMH, 2001; Ringel & Sturm, 2001; Stiffman et al., 1997), the majority of all children—both minority and nonminority—with mental health problems do not receive any mental health service. The recently released report of the President's New Freedom Commission on Mental Health (2003) has identified access to services among children as a top priority. In addition, a report released by the NIMH (2001) indicated that approximately three quarters of children with mental health needs do not receive any type of mental health service, and the disparity between need and use of services is highest among minority youth. These rates are identical to those reported in the mid-1980s by the U.S. Congress, Office of Technology Assessment (1991), which shows that the level of need for services remains unchanged despite decades of scientific progress in developing evidence-based assessments, treatments, and services for these children.
Underidentification is of particular concern in the gatekeeping systems such as schools and primary care settings, where almost all children are seen at some point and where early identification is especially feasible (Costello et al., 1988a, 1988b; Horwitz et al., 1992, 1998; Lavigne et al., 1993; USPHS, 2001a). In fact, in a prospective cohort study, Horwitz et al. (1998) examined the effect of families' attitudes about the appropriateness of discussing psychosocial concerns on pediatric providers' identification of psychoso cial problems. The authors found considerable discrepancy between what parents reported as appropriate to do and what they actually did when they recognized mental health problems in their children. Most (81.1%) believed it was appropriate to discuss four or more of the six hypothetical situations with their children's physician, whereas only 40.9% actually did discuss any of these problems with a physician when a problem occurred.
Directly connected to lack of access are significant problems in capacity: most communities in the United States have few if any child psychiatrists to treat children or adolescents (IOM, 2000). Furthermore, the training of other professionals who are most likely to come in contact with children or adolescents (e.g., family physicians or pediatricians, school counselors, psychologists, social workers) is unlikely to have included any content on empirically based practices (American Academy of Pediatrics [AAP], 2000; National Association of Social Workers). Consequently, the mental health system's ability to accommodate the needs of children and adolescents with mental health problems is acutely compromised.
Cultural Barriers to Access
Additional barriers to access deter racial and ethnic minorities, including mistrust of treatment, discrimination, and differences in communication (McKay & Lynn, in press). Mental health care disparities may also stem from minorities' historical and current struggles with racism and discrimination, which may affect their mental health or contribute to lower economic, social, and political status (USPHS, 2001b). The cumulative weight of all barriers to care, not any single one alone, is likely responsible for mental health disparities.
In addition, studies by Takeuchi, Leaf, and Kuo (1988) have demonstrated that different ethnic groups gain access to services through different routes or pathways. For example, Takeuchi found that African-American families entered community mental health care through referrals from social agencies more often than Caucasian families did, and that Mexican-American fami
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lies entered more often than Caucasian families through school referrals. The patterns of service use also vary across different racial and ethnic groups (McCabe, Yeh, Hough, Landsverk, Hurlburt et al., 1999). These findings have implications for the ways service systems should be organized to serve those who need them and to increase access to care.
Lack of Attention to Family-Driven Practices
Treatments that are inaccessible to those who may benefit from them may be effective but are essentially useless if not accessed. However, a series of important studies have found that successful efforts can be made to enhance a family's service engagement and decrease rates of premature treatment termination. Using brief telephone interviews prior to service entry, a range of studies have been undertaken to troubleshoot barriers to service engagement and increase minority families' participation in services (McKay & Lynn, in press; Santisteban et al., 1996; Szapocznik et al., 1988). Unfortunately, attempts to integrate evidence-based and family-driven engagement strategies with evidence-based clinical treatments are rare. A notable exception to this is a series of studies in New York State, linking implementation of EBPs for child trauma to family-driven practices (Murray, Rodriguez, Hoagwood, & Jensen, in press).
Among the values that have become intrinsic to community-based services have been those that stipulate that parents, guardians, or consumers must be integrally involved in treatment planning and delivery if the quality of care for children is to improve. The federal government through SAMHSA has supported the development of an infrastructure within state mental health agencies to support consumer involvement in service planning, and most states have consumer or recipient offices to strengthen this involvement. Numerous family advocacy organizations now exist to support the needs of families with children who have emotional or behavioral problems more generally, and for those with specific psychiatric disorders (e.g., ADHD, bipolar disorders, depressive disorders, etc.). Simultaneously, there have been several major in itiatives in primary care (through Institutes for Healthcare Improvement, for example) to reform health-care services nationally by positioning consumers centrally in treatment planning so that they are empowered to make decisions about their own health care. These initiatives within both general health care and mental health care are leading to innovations in delivery, such as providing families with vouchers to function as case managers for their child's care. The movement away from office-based practice and toward empowerment of consumers is likely to increase significantly over the next decade.
A major issue affecting the acceptability of EBPs to many families is the concern that use of EBPs may interfere with the individualization of services. For many families, the single most important criterion of acceptability is the extent to which services can be individually tailored (Flynn, in press). Evidence-based practices are often seen as prescriptive and constraining. Thus efforts are being made to meld family-based preferences for individualization of care with EBPs, such as the development of parent empowerment programs taught by parent advocate and professional teams to improve knowledge about EBPs (Hoagwood & Johnson, 2003; Jensen, Hoagwood, & Trickett, 1999). Family advocacy groups, such as the Federation of Families, are also developing family-friendly guides to describe in detail the expectations and levels of involvement that specific EBPs require for their implementation (T. Osher, personal communica-tion, April 2004).
Regulatory Practices
Across the range of what are called EBPs (for psychosocial treatments, medications, services, or preventive programs) there are differences in the ways in which deployment occurs. For example, in pharmaceutical medicine, evidence-based approaches have been built into the regulatory standards developed by the U.S. Food and Drug Administration (FDA) to review scientific evidence and identify effective medications. The strength of the evidence for pharmacological treatments is regulated by the FDA, and an
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industry for their distribution has grown up around this. In contrast, psychosocial treatments, services, and preventive interventions do not have regulatory backing, and their distribution depends largely on the resourcefulness of individuals who developed the treatments or services (Hoagwood et al., 2001)
Financing Policies
A series of financing policies are shaping the reimbursement mechanisms for mental health services for children and their families and consequently the possibilities for delivering new effective clinical treatment models. The most significant of the federal policies are those targeting the financing of children's mental health services. These have included significant increases in funding from sources outside of traditional mental health block grants, including expanded funding for Medicaid, State Children's Health Insurance Program (SCHIP), certain educational programs (e.g., Head Start, Safe and Drug-Free Schools), and privately insured pharmacy benefits, among other sources. Policies focusing on the application of behavioral managed care in the public and private sectors and on expansion of health insurance coverage under SCHIP for uninsured children are reducing the role of mental health agencies to effect policy reforms single-handedly. A related set of financing issues has included expansion of the parity for mental health and general health benefits. These are outlined below.
Medicaid Expansion and State Children's Health Insurance Program
The policies involving expansions of public health insurance, including Medicaid expansions in the late 1980s and the introduction of SCHIP in the late 1990s, changed the insurance distribution for youth who use mental health services. The share of all children, and of children using services, who were uninsured fell (Glied & Cuellar, 2003) because public insurance covered children who would otherwise have been uninsured. Public insurance coverage has also displaced private insurance. In 1998 about 25% of children with a diagnosed mental health problem were publicly insured (Glied & Cuellar, 2003). Among poor minority children, those eligible for Medicaid are likely to have higher rates of mental health problems than privately insured children (Glied & Cuellar, 2003). These policy shifts in health insurance coverage mean that state Medicaid directors must now consider both seriously and less-seriously ill children in making decisions about service distribution.
Behavioral Managed Care
Medicaid programs in most states have shifted their mental health coverage into behavioral managed care. By 1999, for example, 42 states operated some form of managed behavioral health care, and this was triple the number in 1996 (Glied & Cuellar, 2003). Behavioral managed care for youth mental health care has generated substantial savings, mainly through marked reductions in the use of inpatient services and a consequent rise in outpatient services. It is not clear whether these reductions have generated negative outcomes for children, because no studies have yet examined the overall effects of behavioral managed care on mental health outcomes for youth. Cost savings have occurred. The movement toward managed care creates a risk for decreased service, cost shifting, and disenrollment. A study of Medicaid managed care in Pennsylvania found a higher rate of disenrollment for children with psychiatric admissions than for those with nonpsychiatric admissions (Scholle, Kelleher, Childs, Mendeloff, & Gardner, 1997). There is also a potential for this sudden rise of managed care to shift the burden of mental health care to public systems, such as juvenile justice, special education, or child welfare (Hutchinson & Foster, 2003).
Parity
Over the past 8 years, some legislative efforts have targeted parity of mental health and general health benefits. In 1996, the federal government passed the Mental Health Parity Act (which was implemented in 1998), requiring parity in benefits if mental health coverage was also offered. Although it applied only to lifetime and
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doi:10.1093/9780195173642.003.0029
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