The “system-of-care” model was articulated in 1986 by the Child and Adolescent Service System Program (CASSP) in response to reports that children and adolescents with serious emotional disturbance (SED) (9% to 13% of the child/adolescent population) were receiving fragmented, ineffective care largely in residential institutions far from their communities. The system-of-care model has now been widely accepted across the nation. Its core values are that services for children and adolescents with SED should be family-driven and youth-guided; coordinated and integrated across agencies and providers; culturally competent; and tailored to the needs of the individual child and family in the least restrictive environment possible. Federal funding for systems of care across the country have led to new community-based approaches supported by a growing evidence base, including care coordination, wraparound planning, and intensive home-based services. System-of-care values and approaches can be incorporated into office-based practice. The clinician caring for a child with SED should be prepared to actively collaborate with clinicians from different child-serving systems, and learn how to access community-based services. This chapter is intended to provide the primary care clinician or general psychiatrist with an understanding of how systems of care function for children and youth with significant mental health needs, so that they can more effectively interface with such systems; it also suggests some office-based practices that incorporate systemof-care strategies.
Systems of Care: A Paradigm Shift
From the 1960s through the 1980s several important reports on the state of children’s mental health in the nation described shockingly inadequate services for children and adolescents with SED. These reports documented a disturbingly disorganized and fragmented “nonsystem” in which these children were sent to out-of-state residential facilities because services in their own communities were largely unavailable. When they returned from these centers there was minimal coordination with existing resources in their communities and whatever progress was made was difficult to sustain.
In response to these reports, the federal government established the CASSP under the auspices of the National Institutes of Mental Health. In 1986, Stroul and Friedman articulated CASSP’s core values and guiding principles for a system-of-care for children and adolescents with SED. The CASSP principles have served as a template for subsequent system-of-care development all across the nation. A “system-of-care” was defined as a comprehensive spectrum of mental health and other services and supports organized into a coordinated network to meet the diverse and changing needs of children and adolescents with severe emotional disorders and their families. The major elements of the CASSP principles summarized in Table 27-1 include: (1) individualized care that recognizes strengths in the child, family, and community and is tailored to the individual needs and preferences of the child and family, (2) family inclusion at every level of the clinical process and system development, (3) collaboration and coordination between different child-serving agencies and integration of services across agencies, (4) provision of culturally competent services, and (5) serving youth in their communities, or the least restrictive setting that meets their clinical needs, utilizing natural supports in the community whenever possible.
TABLE 27-1 Values and Principles of Systems of Care
Core values—systems of care are:
Child-centered, family focused, and family driven;
Community-based;
Culturally competent and responsive.
Guiding principles—systems of care provide for:
Service coordination or case management;
Prevention and early identification and intervention;
Smooth transitions among agencies, providers, and to the adult service system;
Human rights protection and advocacy;
Nondiscrimination in access to services;
A comprehensive array of services;
Individualized service planning;
Services in the least restrictive environment;
Family participation in ALL aspects of planning, service delivery, and evaluation.
From SAMHSA Mental Health Information Center. Available at: http://mentalhealth.samhsa.gov/publications/allpubs/Ca-0029/default.asp.
There is sometimes ambiguity in usage of the term “system-of-care.” Formal systems of care are programs organized around the CASSP principles. They have specific mechanisms and infrastructure such as blended funding from multiple agencies, to enable agencies, providers, families, and youth to collaborate more effectively. Formal systems-of-care facilitate and explicitly require that services are individualized, family-driven, youth-guided, and preferentially based in the child’s community or in the least restrictive setting possible. System-of-care is also used to describe the philosophy defined by the CASSP values, which have reshaped practice in most child-serving systems. There is also a more generic use of system-of-care to describe the existing child-serving systems—child welfare, juvenile justice, developmental disabilities (DD), mental health, etc., in whatever state of organization, or lack of organization, they exist.
SAMHSA’s Investment in Systems of Care
In 1992, the Center for Mental Health Services (CMHS), part of the Substance Abuse and Mental Health Services Administration (SAMHSA), made the largest investment ever in children’s mental health services when they established The Comprehensive Community Services for Children and Youth and Their Families, which has recently been described by Stroul and colleagues. Through this initiative, SAMHSA has funded over 100 6-year system-of-care projects in diverse communities in all 50 states, Native American tribes, and U.S. territories. These programs provide a broad array of individualized, family-driven, and community-based services, and ensure the full involvement of families in the care of their children and development of local services. CMHS has defined the following specific performance measures for the grants: (1) increased interagency collaboration as measured by referrals from non-mental health agencies; (2) decreased utilization of inpatient or residential treatment by 20%; (3) improved child outcomes in areas such as school attendance and law-enforcement contacts; (4) decreased overall functional impairment of youth; (5) increased family satisfaction with services; (6) increased stability of living arrangements; and (7) decreased levels of family stress.
As reviewed by Mantueffel and colleagues, nationwide outcome data from this CMHS initiative indicate that system-of-care programs have reduced the number of hospital and out-of-home residential placements, improved school performance, improved youths’ behavioral and emotional functioning, reduced violations of the law, and provided more services to children and families who need them. These outcomes have led to increasing congressional appropriations from an initial appropriation of $5 million to the current appropriation of over $100 million.
The primary target population of formal systems-of-care continues to be children and adolescents with SED, defined by SAMHSA as a mental or emotional disturbance listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM), which must be associated with significant functional impairments interfering with major life domains such as home, school, and community. These children and adolescents are typically those with multiple psychiatric diagnoses, often comorbid with learning disorders (LD) and other DD. Objections have been raised to “SED” as stigmatizing and not conveying the psychiatric and neurodevelopmental complexity of this population. Another term that has been suggested is “emotional and behavioral disorders,” now often used in educational settings. In this chapter, the two terms will be used interchangeably.
Children with SED served in systems of care often require the services of two or more child-serving agencies such as mental health, education, juvenile justice, child welfare, or DD, and, therefore, coordination among providers is important. However, according to SAMHSA, two thirds of these children do not receive any services. Therefore, basic access to care, especially in rural areas, needs to improve. Implicit in its public health orientation is that systemof-care methodology also has a place in preventive efforts for young at-risk children, and SAMHSA has followed suit by recently starting a grant program for children ages 0 to 8.
A primary goal of systems of care is to serve youth more effectively in their communities so they can maintain their relationships with families, schools, and neighbors. Community-based treatment and supports are provided to the youth and family, often in the home, to enable the youth to stay at home. These include an array of individualized services such as intensive home-based services, crisis shelter care, treatment foster care, mobile crisis services, skills building, and mentoring. The array of services is summarized in Table 27-2. The trend towards community-based services has received support from several sources, including the limited evidence showing effectiveness of hospital and residential treatment as described in the 1999 Report of the Surgeon General on Mental Health; advocacy from family organizations such as the Federation of Families for Children’s Mental Health (FFCMH); and promising outcomes of home- and community-based interventions. Additionally, separating youth from their families to receive treatment carries the risk that the same problems in the home context will resurface after discharge. Most important, however, is that families have begun to demand more intensive services be provided in their communities so they can keep their children at home.
TABLE 27-2 The Range of Community-Based Services that may be Included in a System of Care
Case management (service coordination)
Community-based in-patient psychiatric care
Counseling (individual, group, and youth)
Crisis residential care
Crisis outreach teams
Day treatment
Education/special education services
Family support
Health services
Independent living supports
Intensive family-based counseling (in the home)
Legal services
Protection and advocacy
Psychiatric consultation
Recreation therapy
Residential treatment
Respite care
Self-help or support groups
Small therapeutic group care
Therapeutic foster care
Transportation
Tutoring
Vocational counseling
From SAMHSA Mental Health Information Center. Available at: http://mentalhealth.samhsa.gov/publications/allpubs/CA-0014/default.asp.
Family-Driven and Youth-Guided Care
The system-of-care model places the child or adolescent and family at the center of the clinical process and makes them full partners at all levels of system planning. Family advocacy organizations such as the FFCMH and National Association for the Mentally Ill (NAMI), strengthened by federal support, have made the concept of family-driven care the cornerstone of systems of care. As summarized in Table 27-3, family-driven care means that families have a primary decision-making role in the care of their own children as well as the policies and procedures governing care for all children in their community, state, tribe, territory, and nation. When operationalized, family-driven care means that family members are present at any meeting in which decisions are made about their child; set the goals and desired outcomes for service planning; and constitute 50% or more of planning groups at the case and system levels. Family-driven care has significantly influenced national policy in adult mental health as well and was embraced by the President’s New Freedom Commission on Mental Health in 2003; one of its six major goals is that Mental Health Care is Consumer and Family-Driven.
TABLE 27-3 Definition of Family-Driven Care
Family-driven means families have a primary decision making role in the care of their own children as well as the policies and procedures governing care for all children in their community, state, tribe, territory, and nation. This includes:
Choosing supports, services, and providers;
Setting goals;
Designing and implementing programs;
Monitoring outcomes;
Partnering in funding decisions; and
Determining the effectiveness of all efforts to promote the mental health and well being of children and youth.
Guiding Principles of Family-Driven Care
Families and youth are given accurate, understandable, and complete information necessary to set goals and to make choices for improved planning for children and families.
Families and youth, providers and administrators embrace the concept of sharing decision-making and
Responsibility for outcomes with providers.
Families and youth are organized to collectively use their knowledge and skills as a force for systems transformation.
Families and family-run organizations engage in peer-support activities to reduce isolation, gather and disseminate accurate information, and strengthen the family voice.
Families and family-run organizations provide direction for decisions that impact funding for services, treatments, and supports.
Providers take the initiative to change practice from provider-driven to family-driven.
Administrators allocate staff, training, support and resources to make family-driven practice work at the point where services and supports are delivered to youth and families.
Community attitude change efforts focus on removing barriers and discrimination created by stigma.
Communities embrace, value, and celebrate the diverse cultures of their children and families.
Everyone who connects with children and families continually advances his/her own cultural and linguistic responsiveness as the population served changes.
From SAMHSA Mental Health Information Center. Available at: http://www.systemsofcare.samhsa.gov/headermenus/deffamilydriven.aspx.
Family-driven care has been expanded to include youth-guided care, which means that youth provide meaningful guidance to mental health professionals based on their own experience as recipients of services. Youth-guided as defined by SAMHSA means that youth have the right to be empowered, educated, and given a decision-making role in the care of their own lives as well as the policies and procedures governing the care of all youth in the community, state, and nation. Youth voice is being developed by the national organization Youth M.O.V.E. (Motivating Others through Voices of Experience), which was organized with SAMHSA’s support to improve services that support positive growth and development by uniting the voices of youth and young adults who have lived experience in various systems, including mental health, juvenile justice, education, and child welfare. Guidelines for family-driven and youth-guided care call for families and youth to be given complete information and included in all decision making about their care. Youth have become active as national speakers and educators of clinicians as to how to more effectively interact with them in clinical relationships. Youth leaders have helped to shape new local and federal initiatives to respond to the unique needs of young adults 16 to 21 years old who are in transition to adulthood and need a variety of ageappropriate social, educational, housing, and vocational supports.
Culturally Competent Care
The number of ethnically and culturally diverse children and youth in the United States is growing and is expected to rise to more than 50% by the year 2030. Children from diverse ethnic and cultural groups face many disadvantages, including language barriers, educational and health care disparities, and multiple forms of discrimination. Culture influences many aspects of family life, including parenting practices and normative expectations for development and adaptive behaviors. Culture is associated with differences in symptom expressions, understandings of mental illness and attitudes towards mental health services. The provision of culturally competent care is a key system-of-care value and was reiterated in the President’s New Freedom Commission on Mental Health in 2003.
The cultural competence model has become widely accepted as the standard of care for culturally diverse youth and families. It involves using knowledge-based skills and attitudes about culture and cultural differences to develop effective, culturally appropriate prevention and treatment strategies. Such strategies include addressing the special mental health needs of diverse populations and disparities in their ability to access care. At the clinical level, cultural competence is essential to providing individualized, customized care that fits the needs of the child and family. It includes the recognition of the unique strengths and resources of the family’s culture that could be protective and provide support to children (e.g., involvement of extended family or religious institutions), as well as recognition of cultural stressors, such as tensions that arise between the parental and children’s generations due to differences in acculturation.
Culturally competent clinical practice begins with the mental health assessment and should include the family’s history of migration, refugee trauma, cultural traditions, language, degree of acculturation, and current experience of being a member of a minority culture. It involves direct service practices such as explicit incorporation of the family’s cultural values into treatment, use of culturally similar service providers (or at minimum language interpreters), and may entail adoption of specific cultural practices such as spiritual traditions, involvement of extended families, and cultural mediators. One clinical challenge is that few evidence-based practices have included ethnically diverse subjects and, therefore, modifications to existing evidence-based practices may have to be made. Organizations can incorporate cultural competence through offering culturally specific services and supports, translating printed material into diverse languages, hiring ethnically diverse staff, offering cultural competence training, and partnering with local businesses to cosponsor culturally diverse events.
The Interface of Children’s Mental Health with Other Child-Serving Systems
Central to the systems-of-care approach is collaboration among the family, youth, and the providers of services and supports. When multiple providers from different agencies or systems are involved, direct communication is the only way to coordinate care and ensure that all efforts are aimed at the same goals. When it is not possible to meet with representatives from all systems, it becomes crucial for a clinician to learn about basic processes within other systems in order to make appropriate referrals and help parents advocate for necessary services. The following descriptions, summarized in Table 27-4, highlight features of the major child-serving systems relevant to clinical practice. Mental health and substance abuse services are discussed together although some states and localities organize and fund them separately.
Primary Health Care
Primary health care is the first system to be involved with a child, optimally starting with prenatal care and continuing with regular well-child visits. The primary care provider (PCP) has the capacity to develop a long-term relationship with the child and parents and is generally the first clinician to learn about a child’s emotional, behavioral, or developmental difficulties. The PCP therefore constitutes an important pathway to early identification and treatment of these problems. As noted by Kelleher and colleagues in 2006, a significant percentage of mental health care is provided by PCPs in the United States and other countries, and there have been national efforts to enhance the role of the PCP in providing quality mental health screening and care through improving reimbursement, provision of training and appropriate consultation, and addressing barriers related to information sharing.
The medical home model for children with special health care needs, articulated by the American Academy of Pediatrics (AAP) in 2007 and endorsed by the U.S. Department of Health and Human Services, is one such initiative. Its premise is that the PCP, as a trusted person with whom the child and family have a continuous relationship, is well positioned to be the first point of contact and to provide preventive, acute, and chronic care that is coordinated and integrated with care from other providers. Another effort towards integration is the provision of easily accessible specialty mental health consultation to assist PCPs in providing mental health services. The Massachusetts Child Psychiatry Access Project (MCPAP) and the Washington State Partnership Access Line (PAL) that provide child psychiatric consultation to PCPs are two such examples; other programs have colocated child psychiatrists and other mental health specialists with primary health care providers.
Advocacy for integration of primary health care with care from other systems has been considerable for the early childhood population. These efforts have been strengthened by the National School Readiness Initiative, which provides funds for states to establish Early Childhood Advisory Councils (ECACs) to coordinate efforts of multiple child-serving agencies, as described below.
Early Childhood Services
Multiple systems are relevant to the health and welfare of young children. Among them are health care, child care, Early Intervention (EI), Head Start, Early Special Education, DD services, child welfare in cases of abuse or neglect, and adult mental health, addiction, and domestic violence services. Many states have ECACs to coordinate efforts of these agencies. The intent is to not only support state efforts to implement requirements of the Improving Head Start for School Readiness Act of 2007, but to engage state-level leadership to maximize the councils’ potential to drive effective policy decisions for children ages birth to five. ECACs include representatives from Head Start, EI, state educational agencies, child care, and local providers of health and mental health care. The intent is to identify barriers and opportunities for collaboration among the various early childhood programs.
TABLE 27-4 Characteristics of Different Child-Serving Agencies
Primary care
Separate funding streams, inadequate reimbursement pose barriers to integration with mental health services
Medical home model for children with special needs
Enhanced mental health services in primary care through mental health consultation
Early Childhood
Services
Relevant services include primary health care, child care, Early Intervention, Head Start, Early Special Education, Developmental Disabilities, Child Welfare in cases of abuse or neglect, parental mental health/addiction/domestic violence services
New SAMHSA system-of-care grants for children ages 0 to 8.
Prevention efforts and service integration promoted by state Early Childhood Advisory Councils
Use of alternative diagnostic system DC:0-3R as a way to improve access
Education
Under Individuals with Disabilities Act (IDEA), child required to have Individualized Education Plan (IEP)
Section 504 of the Vocational Rehabilitation Act allows for individualized plan without full special education designation
Positive Behavioral Support model offers continuum of behavioral supports
School-based mental health services with continuum of supports in the school setting
Developmental
Disabilities
Serves youth with mental retardation and developmental disabilities that impact functioning
High prevalence of comorbidity between developmental and psychiatric disorders
Criteria must be met before age 18-21; eligibility criteria for specific services (e.g., intensive home-based supports) vary by state
Mental Health
and Substance
Abuse
Continuum of care from outpatient to inpatient, with regional and community variations
Role of managed care Medicaid in controlling access
School-based mental health services and other integrated mental health models
Addictions often funded separately; underdiagnosed in youth population
Child Welfare
Mandated reporting of abuse and neglect
Child welfare operates as legal guardian in cases of removal from parental custody
Adoption and Safe Families Act (AFSA) requires early permanency planning
High rates of mental disorders in child welfare population
Difficulty finding appropriate placements may contribute to longer residential placements
Juvenile Justice
High rates of psychiatric disorders (50-70%)
Recent legislation requiring adult adjudication (punishment vs. rehabilitation)
Disproportionate representation of ethnic and cultural minorities. System-of-care interventions have reduced incarceration (MST, and wraparound)
Defining conduct disorder as a “behavioral” versus “mental health” disorder in some communities poses barrier to youth receiving needed mental health services
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Psychological Assessment
