Support and Assistance for Families

Any parent or guardian of a child with an emotional or behavioral disorder can testify to the challenging, sometimes overwhelming, task of caring for and raising such a child. In the past, support from public agencies has been inadequate and disjointed. Compounding the problem was the view that parents were partly, if not completely, to blame for their child’s condition (Friesen & Stephens, 1998). In 1982, a particularly incisive description of the problems faced by families raising children with emotional or behavioral disorders was published. It concluded that parents received little assistance in finding services for their children and were either ignored or coerced by public agencies; respite and support services to relieve the stress on parents were unavailable; parents with children needing residential care were compelled to give up custody to get them placed; and few advocacy efforts were aimed at relieving their problems (Knitzer, 1982).

Over the past two decades, however, recognition and response to the plight of families have become increasingly widespread. The role of families has been redefined as that of a partner in care. Furthermore, there was growing awareness of the difficulties families faced because services are provided by so many different public sources. In addition to problems with coordination, parents and caregivers encountered conflicting requirements, different atmospheres and expectations, and contradictory messages from system to system, office to office, and provider to provider (Knitzer, 1982). Although some agencies began to provide families with training, information, education, and financial assistance, there was often a gap between what families needed and what agencies provided. Also, service agencies themselves began to recognize that putting children into institutions may not have served the child, the family, or the state and that keeping a child with his or her family could reduce the ever-growing costs of institutionalization (Stroul, 1993a, 1993b). Emerging awareness of these foregoing problems galvanized advocacy for a better way to care for children with emotional and behavioral disorders. Reforms were instituted in many Federal programs, as discussed later in this section.

According to Knitzer and colleagues (1993), family participation promotes four changes in the way children are served: increased focus on families; provision of services in natural settings; greater cultural sensitivity; and a community-based system of care. Research is accumulating that family participation improves the process of delivering services and their outcomes. For example, Koren and coworkers (1997) found that, for children with serious mental health problems, the more the family participates in planning services, the better family members feel their children’s needs are being met; participation in service planning also helps service coordination. Curtis and Singh (1996) and Thompson and colleagues (1997) also found that family involvement in services was a determinant of the level of parental empowerment, that is, how much control parents felt they had over their children’s treatment.

New Roles for Families in Systems of Care
Over the past two decades, the Federal government established a series of initiatives to support families. Parents were given progressively greater roles as decisionmakers with the passage of the Education of the Handicapped Act in 1975 and its successor legislation, the Individuals with Disabilities Education Acts of 1991 and 1997. For simplicity, these pieces of legislation are collectively referred to hereinafter as the IDEA Act. This act requires parent involvement in decisions about educating children with disabilities. It guarantees that all children with disabilities receive free and appropriate public education. It also provides funding assistance to states for implementation.

A novel approach taken by some community-level systems of care to encouraging involvement of families is to train and hire family members into a wide range of well-paying, career-ladder jobs as outreach workers, service coordinators (sometimes called case managers), and direct support services providers. These positions are critical to achieving major program goals because they make it possible for children and families to remain together and to participate in the more clinical components of their service plan. Family members are also employed as supervisors of services, involved in hiring staff, providing them with orientation and on-the-job training (e.g., of case managers), overseeing their work, and evaluating their performance. They also participate in research.

Beginning in 1989, the Child and Adolescent Service System Program, a component of the Center for Mental Health Services, began providing some support for statewide family organizations through a series of funding and technical assistance mechanisms (Koroloff et al., 1991; Briggs et al., 1994; also see Integrated System Model). Such organizations were funded to develop statewide networks of information and support for families, to coordinate with other organizations that shared common goals, and to promote needed changes. Currently, Federal funding for 22 statewide family organizations is provided through the Child and Family Branch, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration. Support and technical assistance to community-level family organizations are also provided by the Federation of Families for Children’s Mental Health, the National Alliance for the Mentally Ill, and other family-run consumer organizations.

Family Support
Family support is defined here as the assistance given to families to cope with the extra stresses that accompany caring for a child with emotional disabilities. In addition to the stress of raising a child with an emotional disability, families often face other difficulties such as poverty, joblessness, substance abuse, and victimization. Family support often helps keep families together by assisting them with the practicalities of living and by attending to the needs of all family members (Will, 1998). The main goal of family support services is to strengthen adults in their roles as parents, nurturers, and providers (Weissbourd & Kagan, 1989). Too often, family support services are not available within local communities.

Natural support systems are often diminished for families of children with serious emotional, behavioral, or physical disorders or handicaps because of the stigma of, or embarrassment about, their child’s problems, or because caregivers have insufficient energy to reach out to others. Not surprisingly, most parents report that limited social support decreases their quality of life (Crowley & Kazdin, 1998) and that they feel less competent, more depressed, worried, and tired and have more problems with spouses and other family relationships than other parents (Farmer et al., 1997), although a few families do feel enriched by caring for these children (Yatchmenoff et al., 1998).

In a national survey of parents of children with an emotional or behavioral disorder, 72 percent of respondents indicated that emotional support (irrespective of its form) was the most helpful aspect of family support services (Friesen, 1990). Benefits included increased access to information, improved problem-solving skills, and more positive views about parenting and their children’s behavior (Friesen & Koroloff, 1990).

Family support services occur in several forms: assistance with daily tasks and psychosocial support and counseling; informal or professional provision of services; and practical support such as housing assistance, food stamps, income support, or respite care (i.e., temporary relief for family members caring for individuals with disabilities).

Efforts to stop blaming parents for children’s problems have resulted in parents becoming viewed less as patients than as partners, actively involved in every phase of the treatment process (e.g., home-based care, case management) and as a resource for their children, as discussed above. For the self-help and professionally led family support services described subsequently, parents may function either as partners or as providers. As “partners,” parents act as a resource, active contributor, or decisionmaker; as “providers,” they are viewed as contributing to the welfare and growth of other members of the family.

Results of research on the effectiveness of family services are only beginning to appear, in the form of some controlled studies and evaluations of support services for families of children with emotional and behavioral disorders (although there is a larger literature on families whose children have other types of disability and illness). Although this database on family support programs is still limited, many positive effects have been reported. The following paragraphs cover family support groups as well as concrete services. For the latter, only two types of interventions, respite care and the family associate, are included. Family therapy is covered in this chapter under Outpatient Treatment. Furthermore, several forms of parent training were found to be effective for individual diagnoses, such as conduct disorder (see section on Selected Mental Disorders in Children).

Family Support Groups
The primary focus of family support groups is to provide information and emotional support to members who share a common problem or concern (e.g., disability, substance abuse, bereavement). Support groups for families of children with emotional or behavioral disorders are expanding. Although there is a wide variation in membership, format, and duration of these groups, most share some characteristics. Usually, from 4 to 20 parents meet regularly to discuss the problems and issues associated with parenting a child with emotional and behavioral disorders and to provide mutual encouragement and suggestions for dealing with problematic situations. Support services may be informal, organized, and parent led and are often associated with organizations such as the National Mental Health Association, Children and Adults with Attention Deficit Disorders, the National Alliance for the Mentally Ill, or the Federation of Families for Children’s Mental Health. Mental health professionals may also participate in support groups (Koroloff & Friesen, 1991).

It was found that support groups for parents of children hospitalized with mental illness make parents feel more positive about themselves and increase their understanding of and communication with their children (Dreier & Lewis, 1991). Participation in a six-session education and support group for parents of adolescents with schizophrenia led to increased relaxation and concentration, less worry, changed attitudes toward discipline, and greater ease in discussing feelings. The support from parents in similar situations was highly valued (Sheridan & Moore, 1991).

Another approach to support for parents of children receiving mental health services is education: knowledge of the services; skills needed to interact with the system; and the caregivers’ confidence in their ability to collaborate with service providers (self-efficacy). A training curriculum for parents was tested in a randomized controlled trial involving more than 200 parents who either did or did not receive the training curriculum. Three-month and 1-year followup results demonstrated significant improvement in parents’ knowledge and self-efficacy with the training curriculum, whereas there was no effect on the mental health status of their children, service use, or caregiver involvement in treatment (Heflinger & Bickman, 1996; Bickman et al., 1998).

Practical Support
Respite care is a type of concrete support that provides temporary relief to family caregivers. An investigation of the benefit of respite care is under way in New York in families with children at risk of hospital placement. When respite care was available, families preferred in-home to out-of-home care. The younger the children, the greater the child’s functional impairment, and the fewer the social supports (Boothroyd et al., 1998), the more respite care was used. Outcomes have not yet been reported.

Another form of concrete support is exemplified by the Family Associate Intervention, which was developed in Oregon. It appears to be an inexpensive way to assist children in actually obtaining care after they have been identified as needing care. The goal is to use paraprofessionals (known as family associates), rather than professionals, to facilitate entry into an often intimidating service system. In a controlled study, family associates were found to be effective in helping families initiate mental health service use. Families receiving this support service were more likely to make and keep a first appointment at the mental health clinic. The effectiveness of the intervention was moderate but sufficient to encourage further development of such a low-cost intervention (Koroloff et al., 1996b; Elliot et al., 1998).

Integrated System Model

Within the public mental health system, the 1980s and 1990s have seen an increased emphasis on developing interagency community-based systems of care (Stroul & Friedman, 1986). This focus is driven by awareness that a large number of children are served in systems other than mental health, as well as by children’s complex and interrelated needs, as indicated earlier (Friedman et al., l996a, 1996b; Quinn & Epstein, 1998). In 1984, the Child and Adolescent Service System Program (CASSP) was launched to respond to the fragmentation of public services (Stroul & Friedman, 1986). It was funded by the services component of the National Institute of Mental Health, which later became the Center for Mental Health Services under the Alcohol and Drug Abuse and Mental Health Administration Reorganization Act of 1992 (Public Law 102-321).

CASSP recognized the need for public sector programs to become more integrated in their attempts to meet more fully and efficiently the needs of children and adolescents with a serious emotional disturbance and their families. This Federal program pioneered the concept of a “system of care” for this population, as delineated by Stroul and Friedman (1986, 1996). A system of care, described further below, is a comprehensive approach to coordinating and delivering a far-reaching array of services from multiple agencies. All 50 states and numerous communities have received CASSP grants to improve the organization of their response to the mental health needs of the most severely affected children and adolescents. Although CASSP principles have become a standard for program design, many communities do not offer comprehensive services according to the CASSP model.

CASSP provided the conceptual framework for the Robert Wood Johnson Foundation’s Mental Health Services Program for Youth and the Annie E. Casey Foundation’s Urban Mental Health Initiative. These foundation programs were devoted to the development of local interagency models (Cole, 1990). They were followed in 1992 by the authorization for what was to become the largest Federal program for child mental health, the Comprehensive Community Mental Health Services for Children and Their Families Program (also known as the Children’s Services Program), sponsored by the Center for Mental Health Services (Public Law 102-321).

The Children’s Services Program provides grants to states, communities, territories, and Indian tribes and tribal organizations to improve and expand systems of care to meet the needs of approximately 6.3 million children and adolescents with serious emotional disturbance and their families. The program now supports 45 sites across the country.

Built on the principles of CASSP, the Children’s Services Program promotes the development of service delivery systems through a “system of care” approach. The system of care approach embraced by this initiative is 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 serious emotional disturbance and their families (Stroul & Friedman, 1996). The system of care model is based on three main elements: (1) the mental health service system must be driven by the needs and the preferences of the child and family; (2) the locus and management of services must be within a multiagency collaborative environment, grounded in a strong community base; and (3) the services offered, the agencies participating, and the programs generated must be responsive to children’s different cultural backgrounds. The Children’s Services Program requires a national cross-site evaluation, which has been continuously implemented since the spring of 1994. Preliminary evidence from the uncontrolled evaluation indicates some improvements in outcomes, such as fewer law enforcement contacts and better school grades, living arrangements, and mental health status. As part of the evaluation, comparisons are being made between system of care sites and comparable communities without systems of care (Holden et al., 1999).

Effectiveness of Systems of Care

The previous sections have highlighted the transformations that have taken place since the early 1980s to create comprehensive, interagency, community-based systems of care. This section reviews the findings of research into the effectiveness of such systems of care as compared with more traditional systems.

Several studies on the effectiveness of systems of care have been conducted in recent years (Stroul, 1993a, 1993b; Bruns et al., 1995; Rosenblatt, 1998). Although findings are encouraging, their effectiveness has not yet been demonstrated conclusively, largely because evaluation studies have not had a control group. Most evaluations indicate that systems of care reduce rates of reinstitutionalization after discharge from residential settings, reduce out-of-state placements of children, and improve other individual outcomes such as number of behavior problems and satisfaction with services. After reviewing findings from the demonstration project of the Robert Wood Johnson Foundation, their own work in Vermont, research in California and Alaska, and early findings from the Fort Bragg evaluation, Bruns, Burchard, and Yoe (l995) conclude that “initial findings are encouraging, especially with the history of disappointing results of outcome studies for child and adolescent services” (p. 325). Details are available in the individual studies (Attkisson et al., 1997; Illback et al., 1998; Santarcangelo et al., 1998).

Reviews (Stroul, 1993a, l993b; Rosenblatt, l998) of uncontrolled studies of community-based systems of care showed that young people with serious emotional disturbances who were served under community-based systems of care consistently showed improvement across a range of outcomes. However, most of these studies used a so-called pre-post evaluation design that does not answer the question of whether the changes occurring over time (pre to post) are a consequence of the intervention or of the passage of time itself. Indeed, when comparison groups are studied, such as in the Fort Bragg demonstration project, results tend to be less favorable (see below).

The Fort Bragg Study
The Fort Bragg study, conducted by Bickman and his colleagues (Bickman et al., 1995; Bickman, 1996a; Hamner et al., 1997), merits detailed discussion because of the basic issues it raises and the controversy it engendered. The Fort Bragg study is an evaluation of a large-scale system change project initiated by the State of North Carolina and the Department of Defense in the early 1990s; it was designed to determine what systemic, clinical, and functional outcomes could be achieved if a wide range of individualized and family-centered services were provided without any barriers to their availability. The project involved replacing the traditional CHAMPUS benefit for children who were military dependents in the Fort Bragg area with a continuum of care that included a broad range of services, a single point of entry, comprehensive assessments, and no copayment or benefit limit. The provider agency at Fort Bragg was reimbursed for costs. The impact of this change on children was assessed by comparing outcomes at Fort Bragg with those at two other military installations in the Southeast where the traditional CHAMPUS benefit package remained in effect. The comparison sites restricted services to outpatient treatment, placement in a residential treatment center, or treatment in an inpatient hospital setting; regular copayment and benefit limits were in effect at the comparison sites.

Over a 3-year period, the evaluators collected service use, cost, satisfaction, clinical, and functional data for 984 young people served either at Fort Bragg (574) or the comparison sites (410). Overall, there were a number of favorable findings for the demonstration site at Fort Bragg: access for children was increased; children referred for services were indeed in need of help; parents and adolescents were more satisfied with the services they received than were parents and adolescents at the comparison sites; children received services sooner; care was provided in less restrictive environments; there was heavy use of intermediate-level services; fewer clients received only one session of outpatient treatment; overall, children stayed in treatment longer (although the length of stay in hospitals and residential treatment centers was shorter); and there were fewer disruptions in services (Bickman, 1996a). Thus, the major findings were that the expanded continuum of care resulted in greater access, higher satisfaction with services by patients, and less use of inpatient hospitalization and residential treatment. Bickman also concluded, however, that despite the fact that the intervention was well implemented at Fort Bragg, there were no differences between sites in clinical outcomes (emotional- behavioral functioning), and the cost was considerably greater at Fort Bragg.

The interpretation of the results by the project’s principal investigator has generated much discussion and controversy in the children’s mental health field, both in support of and questioning the study’s conclusions (Friedman & Burns, 1996; Behar, 1997; Feldman, 1997; Hoagwood, 1997; Lourie, 1997; Pires, 1997; Saxe & Cross, 1997; Sechrest & Walsh, 1997; Weisz et al., 1997). Most of the controversy surrounds study interpretation, implementation, methodology, and the interpretation of the cost data (Behar, 1997; Feldman, 1997; Heflinger & Northrup, 1997; Langmeyer, 1997). Furthermore, it has been pointed out that Fort Bragg was not a multiagency community-based system of care (Friedman & Burns, 1996), a point that has been acknowledged by the principal investigator of the study (Bickman, 1996b). Overall, despite the controversy surrounding it, the Fort Bragg evaluation has challenged the notion that changes at the system level have consequences at the practice level and, ultimately, improve outcomes for children and families. The results have stimulated an increased focus on practice-level issues.

The Stark County Study
The shift in focus to the practice level is being reinforced by results from another study by Bickman and colleagues (1997, 1999) of children with emotional disturbances who were served in Stark County, Ohio. In this study, participating children were served within the public mental health system by a multiagency system of care; this was in contrast to the Fort Bragg sample of military dependents seen in a mental health-funded and -operated continuum of care. Children and families who consented to participate in the study were randomly assigned to one of two groups. The first group was immediately eligible to receive services within the existing community-based system of care in Stark County. Families in the second group were required to seek services on their own rather than to receive them within the system of care. The major differences in services provided were that significantly more children and families in the system of care group received case management and home visits than those in the comparison group. Findings indicate no differences in clinical or functional status 12 months after intake. These results are similar to those of the Fort Bragg study and suggest that attention should be paid to the effectiveness of services delivered within systems of care rather than only to the organization of these systems.

Summary: Effectiveness of Systems of Care

Collectively, the results of the evaluations of systems of care suggest that they are effective in achieving important system improvements, such as reducing use of residential placements, and out-of-state placements, and in achieving improvements in functional behavior. There also are indications that parents are more satisfied in systems of care than in more traditional service delivery systems. The effect of systems of care on cost is not yet clear, however. Nor has it yet been demonstrated that services delivered within a system of care will result in better clinical outcomes than services delivered within more traditional systems. There is clearly a need for more attention to be paid to the relationship between changes at the system level and changes at the practice level.