Community-Based Treatment and Services

Andres J. Pumariega

Nancy C. Winters

History and Challenges in Children’s Community Mental Health Services

The early origins of mental health services for children in the United States emphasized a community and even a systems orientation. The context for the birth of these services was America in the 1890s, which, much as today, was undergoing rapid sociocultural changes due to immigration, industrialization, and urbanization. These social strains and their impact on children and families led to marked increases in juvenile crime and status offenses. Enlightened reformers saw the need for detaining young offenders separately from adults and adjudicating them in a separate court system (juvenile courts) that provided an opportunity for rehabilitation. The first community-based mental health services began in response to the perceived need for counseling juvenile offenders and their families. Thus, the new juvenile courts in Chicago and Boston established clinics that comprised the first child mental health services in the nation (1).

Their success led the Commonwealth Foundation to commission a study in the 1920s (and later start-up funding) that promoted the development of child guidance clinics throughout the nation, staffed with interdisciplinary teams of professionals who could serve children and their families. These clinics were first primarily staffed by social workers, but later attracted psychosocially oriented pediatricians, psychologists, and later psychoanalysts (as they emigrated from Europe) and psychiatrists (as the specialty grew and developed). These clinics later served as the bases of the first child psychiatry programs in the nation. They were removed from the specialty-oriented, hospital-based medical system evolving at tertiary medical centers. They provided low-cost services oriented to the needs of the child and the family, with treatment modalities evolving to include individual psychodynamic psychotherapy, family therapy, crisis intervention, and even day treatment programs. Many have survived to this day, and they even served as the model for the community mental health centers advocated in the 1960s community mental health legislation championed by the Kennedy administration, and later implemented throughout America in the 1960s (1).

The “medicalization” of psychiatry, starting in the 1970s and ’80s, served to move child and adolescent psychiatric services toward a more hospital-based, tertiary care model. This left the child guidance clinics, and the community mental health centers that followed them, without significant child psychiatric input, adding to the relative neglect of the development of children’s services. Many of the children previously served in these clinics were served in inpatient
or residential facilities, or placed in foster care or juvenile detention facilities if they lacked third-party payment.

The modern era of community-based systems of care for children was ushered in by the publication of Jane Knitzer’s (2) groundbreaking book, Unclaimed Children, which exposed the aforementioned consequences of neglecting the provision of community-based mental health services for children and their families. Her advocacy and that of others led to the development of the Child and Adolescent Service System Program (CASSP), which assisted all 50 states in the development of an infrastructure for publicly funded community-based services. The CASSP initiative was supported by the conceptual work of Stroul and Friedman (3), which coined the term “community-based system of care for seriously emotionally disturbed children and their families” and enunciated the principles behind such systems of care. Stroul and Friedman’s work spurred the development of various innovative community-based treatment modalities, as well as a number of model demonstration programs in different parts of the United States that exemplify the use of these modalities within the context of an organized interagency system of care. In the early 1990s, the Robert Woods Johnson Foundation established eight pilot demonstration community systems of care programs in different parts of the country that demonstrated the viability of the system of care approach and demonstrated cost savings as well as less restrictive levels of care. Starting in 1994, the CASSP program was transformed into the Child and Adolescent Branch of the Center for Mental Health Services of the Substance Abuse and Mental Health Services Administration, which established the Comprehensive Community Mental Health Services for Children and Their Families Program. This program has funded over 80 community systems of care sites throughout the nation in widely diverse communities and American Indian communities, with over 75,000 children and families served by them, accompanied by a national evaluation. The Surgeon General’s Report on Mental Health (4) also focused many of its recommendations in the area of children’s mental health around the system of care model and its benefits for service system reform and community-based, individualized care.

Interface of Child Mental Health Services with Other Child-Serving Systems

A number of health and human service agencies (schools, social welfare agencies, child protective agencies, juvenile justice, and public health) have experienced the increasing impact of psychosocial morbidity experienced by these children and youth. These agencies typically address pieces of the service system puzzle, with little to no coordination with other agencies often serving the same youth (5).

Juvenile Justice

In spite of the similarities in their populations, the juvenile justice and mental health systems have significant differences in their service orientations and philosophies. The juvenile justice system has faced a recent split in its orientation, between those who still promote the principles of rehabilitation advocated by its original founders, versus those who promote a more purely punitive and public safety approach. The latter viewpoint, with its push for longer sentences and even waivers into adult courts and prisons, gathered currency as the nation witnessed a major increase in juvenile crime in the 1980s (largely in poor inner city and rural areas), culminating in the widely publicized school shootings like that at Columbine, Colorado. This often clashes with the treatment and services orientation of the mental health system, though the latter suffers due to the lack of focus on behavioral containment and long-term followup. The service focus in the juvenile justice system shifted more toward detention/containment, either in juvenile detention facilities or in residential programs with some mental health programming and services (6).

The pressures to detain and incarcerate juveniles have led to overcrowded conditions and poor services in juvenile detention and incarceration facilities that violated several federal mandates. Chief among them is the Civil Rights of Institutionalized Persons Act (CRIPA), which mandates that states provide adequate health, mental heath, and human/social services to people detained on a long-term basis under state custody. However, other mandates, such as the Individuals with Disabilities Education Act, also apply to such youth. There have been well over 20 class action lawsuits involving juvenile justice systems all across the nation (7). Additionally, an increasing proportion of incarcerated youth are youth of color, with significant overrepresentation of underserved racial/ethnic minority groups as youth go deeper into the juvenile justice system. A mandate to reduce disproportionate minority confinement, requiring that states implement efforts to reduce such disparities, existed in federal law up until the late 1990s, but it was discontinued in spite of this serious continuing trend (6).

A number of studies have documented high rates of serious emotional disturbance among youth in the juvenile justice system, with estimates of approximately 50–70% (8,9). Youth are referred to juvenile justice due to their propensity to display aggressive or disruptive behaviors, and after multiple disciplinary interventions in schools and out of home placements. They have similar histories as described for youth in child welfare, and were often previously served by that system. However, these youth typically have underutilized mental health services over their lifetime when compared to cohorts in other systems (10,11). There is also disproportionate representation of minorities in the population of youth served by juvenile justice, especially of African Americans and Latinos. This is both due to the poverty and adversity faced by these youth, as well as the lack of culturally competent services in mental health and other agencies. The poor level of services within juvenile justice facilities also deprives them of adequate services, with racial bias further preventing access to services (12).

This trend toward the juvenile justice system becoming the “mental health system of last resort” for juveniles, as well as the public support for crime prevention, has led to increasing funding for services for juvenile offenders, including mental health services. They are leading either to the development of closer alliances between juvenile justice and mental health, or at times to the development of separate mental health services within the juvenile justice system. The latter trend may increase the access and control over these services for juvenile justice, but may result in unnecessary and costly duplication of services (6).

Areas of natural collaboration between these systems are in the prevention of entry into juvenile justice, particularly into detention/incarceration, and the treatment of youth with SED into the juvenile justice system. Multisystemic therapy (MST) has been tested extensively with youth at risk of detention and incarceration, and has resulted in significant reductions in out-of-home placement, externalizing criminal behaviors, rates of arrest and incarceration, and treatment costs (13). The significant reduction of incarceration by the CMHS system of care demonstration sites also supports the value of the system of care model in addressing the needs of this population of youth (14). The Surgeon General’s report on youth violence (15) also reviews a number of effective preventive interventions for youth violence and delinquency.

Child Welfare

The original mission of the child welfare system was to provide custodial care for children and youth who were abandoned or abused by their families. This mission was initially met through the operation or support of orphanages in years past, and foster homes and group homes in later years. However, in recent years there has been greater recognition that children in the child welfare system have extremely high mental health needs, with prevalence rates estimated at about 50 percent, yet are significantly underserved with respect to mental health services (16). This is understandable considering the enormous stresses these children experience. Already traumatized by the abuse and neglect that led to removal from their parents’ care, children placed in foster care are confronted with the additional traumas of the loss of their parents, multiple relocations, uncertainty about their future, and the difficult task of establishing positive attachments to new parent figures and foster siblings. In addition to having symptoms related to trauma and disrupted attachments, they are also at high risk for disruptive behaviors. They have greater difficulties in functioning at home, school, and in their communities, placing them at high risk for additional failed placements and need for residential treatment (16).

These needs led to the proliferation of residential treatment centers focused on the custodial and at times treatment needs of children in custody, particularly adolescents. Many of these facilities provide quality therapeutic and support services, but others in many states are largely unregulated in terms of the level or quality of service provision. Additionally, efforts to pursue effective permanency and transition plans back to the community are hampered by inadequate case management and community mental health services both for the youth and the family. These factors have led to a rapid increase in the number of children and youth cared for within such facilities for extended periods of time. Serious problems in the delivery of their care, such as indiscriminate polypharmacy, overuse of seclusion and restraints, and abuse at the hands of direct care staff, continue to hamper the system in spite of Knitzer’s (2) original admonitions in the early 1980s.

The legal and social structures responsible for the care of children in state custody further complicate the situation for children in the child welfare system. The courts may make decisions supporting reunification that compromise the child’s physical and/or emotional safety. Ninety percent of children in foster care are returned to their biological parents (17), and mental health services needed to support the reunification process are often inadequate. An additional challenge is the length of time children are spending in foster care without permanent plans for them being developed. There is the additional risk of further abuse in poorly monitored and overcrowded foster homes. Recent legislation such as the Adoption and Safe Families Act of 1997 attempts to shorten the time children spend in foster care (16).

When children are in foster care, there are unique challenges to establishing effective collaboration. There is first the challenge of forming a child–family team with multiple individuals who have varying levels of emotional commitment to and willingness to advocate for the child. These include the foster parent(s), child welfare worker, mental health professionals, court-appointed advocates (or attorney) for the child, possibly the biological parent(s), and/or extended family. The child- and family-centered system of care model works best when the child’s parents are very invested. This may be difficult for foster parents, who are often caring for multiple high-need children and are not able to commit emotionally to a child who may live with them for a short period. Foster parents also suffer from inadequate training, support (including respite services and ongoing mental health consultation), and reimbursement for the care of children, particularly those who are seriously emotionally disturbed.

Another serious problem is the child welfare system being used by families in many states as a way to access intensive mental health services for children with inadequate insurance benefits. Intensive services (residential or day treatment), which may exceed $75,000 per year, are funded for children in state custody but are not covered by private insurance or Medicaid. In extreme cases, parents are forced to claim that they have neglected or abused their children. Parents lose control over the treatment their child receives while in state custody and, upon return home, their child may again have inadequate mental health coverage, compromising aftercare. These policies highlight the underlying problem of discriminatory policies toward childhood psychiatric illness.

These factors operate in the context of increasing numbers of children with complex mental health needs is soaring mental health costs, and are resulting in many federal class-action lawsuits. This is especially true for the Early Periodic Screening Detection and Treatment mandate for Medicaid. EPSDT mandates periodic health and mental health screening for covered children and medical necessity authorization of treatments and services to address abnormal findings, a benefit often omitted from managed Medicaid plans (7). Another arbitrary constraint within mental health systems that increase the risk of children being placed in foster care is the lack of needed parenting support services for individuals with mental illness, while states will fund the placement of their children in foster care. A different challenge is presented by the Welfare to Work law, which requires low-income parents to return to work to maintain some of their benefits. For some parents of at-risk children, this requirement makes it exceedingly difficult to spend the time needed to address the child’s emotional or behavioral problems (16).

Children in foster care and those at risk for being placed in foster care are ideal candidates for the system of care approach, which can prevent out-of-home placement, support the strengths of the child and family, and use natural supports in the community. Wraparound programs, intensive case management programs, and therapeutic foster care are community-based interventions that have demonstrated effectiveness with this population of children and families (18). The American Academy of Child and Adolescent Psychiatry and the Child Welfare League of America (19) have developed specific screening, evaluation, and service standards to address the unique needs of children in the child welfare system. There is also a growing evidence base for psychosocial interventions for children with trauma-related disorders (20). Another positive trend is that of supporting foster care within a kinship network (extended family), allowing for relationships with family members to be sustained. More states are allowing families to retain custody of their children while they are in state-supported residential care (Oregon is one example); such changes to existing laws are usually accomplished only through significant advocacy by parent groups. (Also, see Chapters 5.15.1, 5.15.4, and 7.3.3)

Education

The educational system faces the impact of increased educational demands for average students due to the increased technological and informational demands on our society. In addition, the increasing needs of children with learning disorders and serious emotional disturbances are placing added burdens on schools. This occurs in the context of the underfunding of school districts due to downward pressures on property taxes (as exemplified by Proposition 13 in California) and other means of funding education. This
lack of funding is especially felt in the area of special education services. Many school districts actively avoid the mandates of federal laws such as the Individualized Disability Education Act (IDEA) and Section 504 (which outlines services for mentally ill/emotionally disturbed children), often underidentifying children with covered disabilities and temporizing their needs informally through the services of regular classroom teachers so as to prevent added service commitments (21).

A recent salutary development in the area of interagency systems of care is the renewed interest in school-based services. These go beyond traditional school mental health consultation services and involve the colocation of health and mental health professionals within schools to provide a wide array of direct and indirect/preventive health and mental health services. School-based mental health services serve as an as ideal core service for a children’s system of care, providing an excellent accessible portal of entry which is nonstigmatizing, and a naturalistic setting to observe behavior and integrate interventions into a child’s environment. These services are often funded through blended Medicaid fee-for-service and managed care funding augmenting limited school funding. A number of models have been implemented in communities such as Baltimore, Maryland, rural South Carolina, the state of Hawaii, and Charlotte, North Carolina, with documented success in reducing adverse morbidity and increasing access to needed services (22,23,24). Innovative approaches through legislation to ensure interagency collaboration in IDEA-mandated services have been promoted in California through a law that mandates interagency collaboration in the development and implementation of individualized educational plans when these involve areas outside of educational services ((25); Also, see Chapter 7.2).

Developmental Disabilities

Children and youth with developmental disabilities have significant mental health and social services needs. The prevalence of comorbidity of developmental disorders and behavioral/emotional disturbances are estimated to be quite high. In addition to mental health services, the service needs of children and youth with developmental disorders are often wideranging, including educational services, medical services (including general pediatric, neurological, and genetic), child welfare and social supports (with high rates of abuse and abandonment), and even juvenile justice services. The latter need is highlighted by the high prevalence of youth with Asperger’s disorder found in juvenile justice populations (26). However, there is little recognition of these multiple service needs in the developmental disabilities service sector, much less adequate resources to meet them. Most state governments assign responsibility for serving children with developmental disabilities to the educational system under IDEA and ignore interagency collaborative approaches for their care. However, this system is overwhelmed in meeting its educational mission and dealing with more straightforward learning disabilities. The adult developmental disabilities sector is also moving rapidly to deinstitutionalize individuals currently in state training schools or facilities to community care, including the few youth in such programs. However, the behavioral support resources and staffing needed for successfully moving such individuals to community care are very limited, leaving them functioning at lower levels than their potential, and at risk of frequent utilization of psychiatric emergency services, hospitalization, and overmedication. This has led to many states experiencing class action lawsuits over the access and quality of care for its developmentally disabled citizens (26).

Primary Health Care

Primary care providers (including pediatricians, family physicians, some internists, and primary nurse practitioners) are the first line of mental health services for children in our nation, especially in rural and underserved areas. Studies (27) have demonstrated a high prevalence of mental health need among children and youth seen in primary care practices and settings. This role is even more critical in the Medicaid covered population, where the EPSDT benefit includes the requirement for annual screening, referral, and treatment for mental, emotional, and developmental disorders as well as physical illness. Potentially, the primary care system could be the most important (besides the educational system) in any effective effort to prevent the developmental morbidity of undetected and untreated mental illness in our children and youth (28).

In spite of these well known facts and mandates, very little has been or is being done to effectuate this role and function for the primary care sector. Primary care providers receive little to no training in child mental health and mental illness in their preservice or residency training. They are generally not provided (and not trained to use) the increasing number of evidence-based tools for effective screening and identification of youngsters with such needs. Access to specialist child mental health consultants and collaborators is hampered by problems with access and reimbursement. Additionally, the reimbursement mechanism for the direct delivery of entry-level mental health services by primary care practitioners is shrouded in mystery and bureaucracy, as if in an effort to reduce access to such services. The carve-out model primarily used for mental health benefits under managed Medicaid keeps “medical” and “mental health” sources of funding artificially separated (28).

There are some encouraging efforts toward enhancing and improving models of collaborative care between primary care and mental health providers, including child and adolescent psychiatrists. A few state Medicaid plans, particularly Vermont and Massachusetts, have adopted model or statewide programs to facilitate access to child mental health consultants by primary care practitioners. Some others have invested in training for primary care practitioners on EPSDT tools and referral procedures and support and consultative programs to enhance their function as mental health providers to high-risk populations. Other more formal models of collaborative care, using such technologies as telemedicine, are being evaluated and found to be effective in improving access to community-based care (28).

Current Crisis: Problems with Access and Overlap Across Populations

There continues to be increasing need for child mental health services in the United States. Recent studies suggest overall prevalence rates for childhood mental illness of 15 to 19%, with 3 to 8% for serious mental illness and emotional disturbance. However, less than one percent of children in the United States receive mental health treatment in hospital or residential settings, and another five percent in outpatient or community-based settings, with the majority of children in need receiving insufficient or no mental health services whatsoever (5). By contrast, the budgets dedicated to the financing of public mental health services for children have grown exponentially since the 1970s. For example, total Medicaid expenditures for mental health (largely applied to children) will grow to an estimated $14 billion by 2010, comprising a large portion of the total national mental health budget. A disproportionate level of these expenditures have been dedicated to inpatient and
residential treatment, which are viewed with increasing skepticism given their high cost as well as limited documentation of outcome (4). In addition, the care of many children with mental illness and emotional disturbances is still shifted to the child welfare and juvenile justice systems, with many studies demonstrating a significant overlap between the children they serve and those served by mental health (7e).

Community-Based Systems of Care: An Integrative Model

In 1970 the report of the Joint Commission on the Mental Health of Children (29) documented serious problems in the quality of mental health care for children and adolescents with serious emotional and behavioral disturbances. The response, however, did not materialize until the study Unclaimed Children (2), published by the Children’s Defense Fund, described disturbingly fragmented, uncoordinated care for this group of children, frequently separated from their families and communities and sent to institutions far from their homes. In 1984 the federal government responded by establishing the Child and Adolescent Service System Program (CASSP) under the auspices of the National Institutes of Mental Health (NIMH) to promote development of an integrated system of care for children and adolescents with serious emotional disturbance. CASSP provided seed money to states to expand mental health services to children and adolescents and established a set of core values and guiding principles for a system of care for children with serious emotional disturbances. CASSP principles comprise what became known as the system-of-care approach, 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 (3,30).

The CASSP principles, now referred to as community systems of care principles, are based on a flexible and individualized approach to service delivery for the child and family within the context of his/her home and community as an alternative to treatment in out-of-home settings, while attending to family and systems issues that impact such care. These include access, utilization, child and family empowerment, financing, and clinical and cost effectiveness of mental health services provided to children and adolescents, as well as the functioning and effectiveness of systems of care for child mental health. Psychiatry, which was central in the traditional model, has only recently reengaged itself as a discipline in this new model. Psychiatrists face a major challenge in reaffirming their valued position in this model and integrating their developing clinical and scientific knowledge and skills base (3).

The CASSP initiative set forth the initial principles inherent in community-based systems of care. The key principles include: access to a comprehensive array of services, treatment individualized to the child’s needs, treatment in the least restrictive environment possible, full utilization of family and community resources, full participation of families as partners in services planning and delivery, interagency coordination, the use of case management for services coordination, no ejection or rejection from services due to lack of “treatability” or “cooperation” with interventions, early identification and intervention, smooth transition of youth into the adult service system, effective advocacy efforts, and nondiscriminating, culturally sensitive services (3).

Another important principle inherent in this approach is that of the targeting of services to what are termed “seriously emotionally disturbed children.” This designation includes the presence of an Axis I diagnosis under the diagnostic and statistical manual of the American Psychiatric Association (31), but places equal emphasis on the child’s inability to function in at least one of his/her life domains (school, home, socially with peers). This reflects the difficulty in accurately diagnosing many children with serious functional problems, the bias against disruptive disorders (and failure to identify comorbid serious mental illness), and the lack of clarity and validity in clinical child diagnosis. Studies also suggest that the level of care received by children is only partially accounted by their clinical diagnosis, while level of function and psychosocial stressors are stronger predictors (32).

Implementation at the Clinical Level

The system-of-care model places the child and family at the center of the clinical process and as full partners at all levels of system planning (33,34). Federal support and technical assistance to family advocacy organizations such as the Federation of Families for Children’s Mental Health, National Association for the Mentally Ill, and others has facilitated expanded roles for family members in the mental health system and family empowerment through increased involvement in clinical and programmatic decisionmaking (4). The perspective of youth served in the mental health system is now being heard as family and consumer organizations are developing a cadre of youth advocates who can provide meaningful guidance to mental health professionals based on their own experience as recipients of services (35).

Family-driven care is a cornerstone of the system-of-care approach and has had a significant influence on national policy for both child and adult mental health (36,37). The child and family drive the clinical planning process through determining the goals and desired outcomes of services, selecting the composition of the interagency planning team, evaluating the effectiveness of services, and having a meaningful role in all decisions, including those that impact funding of services. The interagency planning team has representatives from all the agencies involved with the child, and the team process facilitates interagency and interdisciplinary collaboration. The complementary contributions of various team members function synergistically in identifying system and community resources to promote better outcomes.

Some children and youth enter the system of care with discrete problems that can be addressed by a specific and/or time-limited service. For children with complex problems involved in multiple child-serving agencies, assessment and treatment planning should be accomplished through interdisciplinary clinical teams. The emphasis within these teams should be on the child and family’s strengths, addressing specific clinical needs and supporting the child in his/her family and community environment. Mobilizing natural and normative resources (such as churches, community groups, recreational and extracurricular school-based activities) assures that the child is fully included in the life of the community and that developmental and clinical needs are served. This model emphasizes the need for a single case manager who will coordinate and manage these collaborative efforts. Interagency multidisciplinary teams invite full participation of consumer families and, when appropriate, the youth being served. Family advocates are involved coequally with professionals. Such teams function as treatment teams, coordinating multidimensional assessments, creating a crisis plan and a comprehensive care plan that embraces the clinical treatment plan. Such teams strive to bring professionals with very different goals and perspectives into a working relationship, defining the scope of each agency’s work so as to assure that there is no duplication of efforts and no gaps in care. Funding constraints due to legally mandated categorical limits could leave some
needs of a child unfulfilled. Many families can be well served by such interagency collaborative efforts, but often a parent or a youth surrounded by a team of professionals finds the experience intimidating and has trouble feeling that they are full participants in the planning process (38).

The wraparound process is a specific model of a child- and family-driven team planning process that has been empirically tested. Wraparound is a definable, integrated planning process that results in a unique set of community services and natural supports that are individualized for a child and family to achieve a set of positive outcomes. The wraparound process builds on the strengths of the child and family, is community-based using a balance of formal and informal supports, is outcome-driven, and provides unconditional care (39). Use of a strength-based orientation and discussion of needs rather than problems promotes more active engagement of families in service planning activities. Interventions designed to reinforce strengths of the child and family may include nontraditional therapies such as specific skills training or mentored work experiences that remediate or offset deficits. These interventions generally are not included in traditional categorical mental health funding and may require flexible funds that are not assigned to specific service types (40). For example, a youth at risk for substance abuse might receive funding for prosocial activities such as a health club membership or computer training. It has been noted that services are more likely to be effective if the wraparound process is informed by comprehensive clinical assessment addressing diagnostic and treatment issues and if the specific interventions are evidence based (41,42).

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