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This Web site is a component of the SAMHSA Health Information Network. |
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1999 Annual Report to Congress on the Evaluation
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Over the past three decades, increasing attention has been given to the needs of youngsters with serious emotional disturbance. Beginning with the findings from the Joint Commission on the Mental Health of Children (National Institute of Mental Health, 1969) and substantiated by numerous subsequent studies, task forces, and reports, children with serious emotional disturbance were typically found to be underserved or served inappropriately by a fragmented mental health services system. In response to these findings, Federal leadership, along with a growing family movement, began to emerge and create a new paradigm for serving the estimated 4.5 to 6.3 million children in the United States who have a serious emotional disturbance (Friedman, Katz-Leavy, Manderscheid, & Sondheimer, 1999). This paradigm shift has resulted in a system-of-care approach designed to help build comprehensive service systems that allow children with emotional disturbance to receive a comprehensive array of integrated, community-based services. Since first articulated by Stroul and Friedman (1986), the system-of-care approach has evolved into the principal organizing force shaping the development and delivery of community-based children's mental health services in the United States. Hallmarks of this approach include the following:
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In 1986, Stroul and Friedman provided a philosophical framework for developing and delivering community-based children's mental health services. The Center for Mental Health Services (CMHS) within the Substance Abuse and Mental Health Services Administration (SAMHSA) has had the primary responsibility for translating this framework into a program of services and supports that now exists in 45 grant communities around the country. Beginning with a funding mechanism to support the creation of a service system infrastructure called the Child and Adolescent Service System Program (CASSP) in 1986 and culminating with the passage of the Children's and Communities Mental Health Services Improvement Act in 1992, CMHS has championed the development of community-based, family-focused, and culturally competent systems of care. Funding for these systems of care is provided through CMHS's Comprehensive Community Mental Health Services for Children and Their Families Program.
This program, now in its sixth year, provides grants to States, communities, territories, American Indian tribes, and Alaskan Native communities to improve and expand their systems of care to meet the needs of children and adolescents with serious emotional disturbance and their families. These include children and youth with a serious emotional disturbance from birth to age 21 who currently have, or at any time during the past year had, a mental, behavioral, or emotional disorder of sufficient duration to meet diagnostic criteria specified in the Diagnostic and Statistical Manual for Mental Disorders, Fourth Edition (DSM–IV; American Psychiatric Association, 1994), that resulted in functional impairment that substantially interferes with or limits one or more major life activities. Administered by CMHS's Child, Adolescent and Family Branch, funding for the initiative has grown from an initial $5 million in its first year to the current level of $78 million. From 1993 to1999, a total of 45 grants were awarded for 5 years each (see Table 1). Up to 22 additional grants may be awarded in fiscal year (FY) 2000.
Goals of the CMHS Initiative
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The Comprehensive Community Mental Health Services for Children and Their Families Program represents the largest Federal investment ever in the development of community-based mental health services for children and their families. This investment has resulted in the rapid proliferation of the system-of-care model within a swiftly changing social and political landscape. Strong evaluation components at both the individual grant community and the national level have undergirded the program since its inception.
There is a growing knowledge base about children with serious emotional disturbance and about system-of-care services and treatments; however, many important questions remain. For example, understanding of child and adolescent mental health disorders has significantly improved since the establishment of standard diagnostic categories. Nevertheless, variation in how children with a diagnosable disorder display significant impairment in day-to-day functioning has not been clearly ascertained. A clearer understanding of this variance is critical for accurately identifying children with serious emotional disorders. Perhaps even more important are the policy, services, and treatment implications that derive from an understanding of the impact of serious emotional disorders on child and adolescent functioning. Equally significant, but less well documented, are the implications for families. In addition, there is a high rate of stability and persistence of serious emotional disorders that potentially has long-term effects in many domains of functioning, often persisting into adulthood (Burns, 1999). A better understanding of these long-term effects is necessary for developing appropriate services and supports that transition children with serious emotional disturbance into an adult world.
Another area for further examination relates to the populations that systems of care serve. Some studies have provided data on racial or ethnic backgrounds, gender, specific diagnosis, and level of impairment about a population of youth frequently underserved or under-examined (Landrum, Singh, Nemil, & Ellis, 1995; Rosenblatt & Attkisson, 1993; Berndt et al., 1995; Silver, Unger, & Friedman, 1993; Cullinan, Epstein, & Sabornie, 1992). Other studies have made attempts to draw comparisons between characteristics found in the study sample and information about the community or population from which the sample was drawn (Rosenblatt & Attkisson, 1993; Santiago, Grosser, & Rejino, 1997). However, a complete understanding of whom systems of care serve or where referrals originate is lacking. Nor is there an adequate understanding of the unmet need, or the degree to which children are underserved (Coutinho & Denny, 1996).
Finally, there are critical questions to be answered about the overall effectiveness of systems of care. Few studies in the children's mental health field have included comparison populations with long-term follow-up of multiple outcomes. Those that have been conducted have yielded results with limited applicability to the implementation and development of service delivery systems for children in the public mental health sector (Bickman et al., 1995; Bickman, Summerfelt, & Noser, 1997). Additional work must be done to determine whether greater improvements in children's behavior and functioning can be attributed to systems of care compared to traditional service delivery systems.
The Comprehensive Community Mental Health Services for Children and Their Families Program provides a living laboratory in which to answer the questions posed above. CMHS's commitment to promoting knowledge development and application has resulted in a national, cross-site evaluation of the program that began in 1994. The evaluation is conducted by ORC Macro and its partners, the Louis de la Parte Florida Mental Health Institute of the University of South Florida and the Federation of Families for Children's Mental Health.
The evaluation is designed to maintain accountability and address the pressing need for information upon which to base programmatic, funding, and policy decisions. It also responds to the mandate in the authorizing legislation to conduct an annual evaluation of the program's effectiveness. A basic requirement of the mandate is to describe the children and families served by the system-of-care initiative. Other requirements include an assessment of how systems of care develop, what factors impede or enhance their development, whether children served by the program experience improvement in clinical and functional outcomes, whether improvements endure over time, and whether consumers are satisfied with the services they receive.
Underlying the design of the evaluation is a program theory model, which has evolved to explain how systems of care are intended to work, that is, a delineation of what must be done to achieve desired goals (see Figure 1). The model illustrates the connection between resources allocated to the program; the program activities that develop; and the intended outcomes at the system, practice, and child and family level. The system of care provides a fertile context for developing the infrastructure that supports program activities and integrated, community-based practices to produce successful child and family outcomes. The model depicts the intended relationship between funding for systems of care, development of the systems, and demonstrations of their effectiveness and sustainability so that system reform is the ultimate outcome. As the program model shows, evaluation is also designed to provide feedback to continuously improve the quality of the program.
The evaluation has been designed to provide an understanding of the implementation and development of systems of care as portrayed in the program theory model. In summary, evaluation findings provide
The evaluation design includes multiple components that involve a variety of quantitative and qualitative methods. To date, two phases of the evaluation are underway. Phase I of the evaluation includes the 22 grant communities funded in FY 1993 and FY 1994. All grant communities in this phase completed their 5-year cycle of Federal funding by December 1999. Phase II of the evaluation builds on lessons learned in Phase I and includes the 9 grant communities funded in FY 1997 and the 14 grant communities funded in FY 1998. The major components of the Phase I and Phase II evaluation are briefly described below.
Besides these core components, two special studies were conducted during Phase I. A study on the effects of managed care assessed the impact of managed care initiatives on the development and operation of six local systems of care and began to identify aspects of the structure, design, organization, and characteristics of managed care systems that have facilitated or created problems for mental health service delivery to children with serious emotional disturbance and their families. The study found that when system-of-care participants were involved in shaping the managed care plan, system-of-care principles could be integrated into reforms. A second special study, called a family scan, examined how extensively families were involved in evaluating systems of care. This study delineated the roles family members have played in the national evaluation, and it tapped the perspectives of three major groups: families, project directors, and evaluators at the local grant communities. The family scan provided a baseline of information about the role of families in evaluation and found that families were involved in a wide range of evaluation activities.
Phase I of the evaluation will come to a close in December 1999. This report includes descriptive and outcome data from the 22 grant communities in Phase I. Of these 22, the first four grant communities funded in FY 1993 reached the end of their funding period in September 1998. These grant communities were profiled in the 1998 Congressional Report. The next seven grant communities reached the end of their funding in March 1999 and are profiled in the graduating grant communities section of this report.
Two longitudinal comparison studies were underway in FY 1999. In the Phase I grant communities, the comparison study was implemented in FY 1997, with completion planned for FY 2000. The Phase I study compared three CMHS-funded system-of-care communities with three matched comparison communities that were not funded by CMHS to establish systems of care. The second longitudinal comparison study began in FY 1999 and will be completed in FY 2003. It includes two CMHS-funded system-of-care communities and two matched communities that have not received CMHS funds.
The design and instrument package for Phase II was approved by the Federal Office of Management and Budget (OMB) in September 1998. During FY 1999, each of the nine grant communities funded in September 1997 was visited to establish relationships and to conduct training on data collection. Most grant communities devote the first year of the grant funding period to the development or refinement of system-of-care services, hiring, and other start-up activities. Preliminary descriptive and intake data are reported from these grant communities. System-of-care assessment visits were made in the spring of 1999 to these grant communities, and preliminary results from this assessment are reported herein. The 14 grant communities funded in FY 1998 were engaged in start-up activities during FY 1999 in preparation for data collection beginning in FY 2000; therefore, they did not have data to contribute to this report.
The remainder of this report presents the FY 1999 evaluation activities and findings. Chapter II presents system development findings from Phases I and II. Chapter III presents aggregate child and family descriptive and outcome data from Phase I and preliminary data from Phase II. Chapter IV summarizes initial findings from the comparison studies in Phase I. Chapter V presents information about services and costs. Chapter VI profiles the Phase I graduating grant communities, chapter VII highlights findings from the two special studies, and chapter VIII profiles CMHS-funded activities in support of the grant projects.
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