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Systems of Care Development and Family Perspectives

In order to assess how systems of care are being implemented and are developing, Macro and USF teams conduct two types of site visits. System development site visits are conducted annually in 30 local systems of care. Through semi-structured interviews, document reviews, and observations, site visitors provide a description of system of care development over time. In the family-centered site visits, case studies are conducted with selected families in a limited number of sites to ascertain the system's responsiveness to family needs. These interviews provide information about service delivery in the context of the communities in which the systems of care operate. Together, the two types of site visits provide detailed descriptive information about system of care development and how services are experienced by the families.

System of Care Site Visits

The second annual site visits to grantees to assess the degree of development in individual systems of care were conducted during the summer and fall of 1996. Thirty sites, representing local systems of care across the 22 grantees, were visited (see Appendix A for map of sites visited).

Site visits were organized around a comprehensive and detailed set of interview protocols, which allow multiple respondents to address questions pertaining to 16 attributes across two domains: infrastructure and services delivery (see Table 3). The infrastructure domain assesses organizational arrangements and processes that, together, provide the overall framework and foundation of the system. The service delivery domain focuses on the actual provision of care to children and their families. The attributes under these two domains define the key characteristics of the system-of-care approach. These attributes are expected to vary across participating grantees because of the flexibility the grantees were given to shape their approaches to fit unique community contexts and needs.

Each site-visiting team was comprised of two or three people trained to implement the protocols. The site visitors spoke with respondents representing diverse perspectives on the system of care: project managers, direct service providers, families served in the system, and community representatives.

Family-Centered Site Visits

Family-centered interviews were conducted in eight⁽¹⁾ sites using a case study approach. Study protocols were developed to explore issues related to six service principles defined by Stroul and Friedman (1986, revised):

• Early intervention/prevention: Services are aimed at reducing the prevalence and severity of problems faced by children through effective early identification and intervention involving both the children and their families.
• Family centered/focused: Services are dictated by the needs of the child and family, are based on the family's strengths, and are provided in a manner which maximizes opportunities for involvement and self-determination in planning and delivery.
• Individualized: Services are designed in accordance with the unique needs and potentials of each child and the child's family, and are guided by an individual plan.
• Community based: Services are provided in the community, in the least restrictive environment possible, and are accessible and available to residents.
• Culturally competent: Services value cultural diversity, acknowledge and work with the underlying cultural dynamics of the community and family, and adapt to meet the needs of the different cultural and ethic groups within the community.
• Integrated and coordinated: Services respond to an interrelated array of problems, delivered through linkages between public and private providers.

Interviews were conducted with an individual child receiving services (e.g., mental health, juvenile justice, special education, and child welfare), his or her primary caregiver(s) (e.g., biological parents, foster parents, relative or other guardian), persons who provide informal support to the family (e.g., relatives, neighbors, friends of the family), and representatives of the different systems serving them, (e.g., case managers, mental health counselors, probation officers, teachers). For each child, anywhere from four to seven individuals were interviewed. In each site, family-centered interviews were completed for 12 children and their families. In the analysis, their individual perspectives on services were internally triangulated with each other and with written evidence found through document reviews in order to establish consensus or disagreement around a topic. An additional source of data came from the perspectives of the data collectors themselves. Each data collector or reviewer completed an entire case and thus acquired a holistic understanding of the way in which the system interacted with that particular family. Experienced reviewers were required to rate a series of system quality indicators based on their assessment of the case. These ratings were ultimately triangulated with the answers of interviewers and evidence from the records.

Sampling for the family-centered interviews was conducted with the help of a site liaison. Individual children were selected who met the following criteria: families involved in at least two services within several systems, involvement with the system of care a minimum of six months, and the same service coordinator or case manager for a minimum of three months.

Findings From Year Two System Site Visits and Family-Centered Site Visits

Overall Systemness Development

For the purposes of this study, "systemness" refers to the extent to which system-of-care principles are achieved. In general, site visit findings showed progress in overall system of care development across grantee sites and across the 16 attributes. The nature and extent of progress made between Year 1 and Year 2 site visits varied across individual grantees. Overall systemness showed substantial development in some sites; but in other sites, systemness was fairly static. It is important to note that no system of care has fully achieved optimal development, and all sites recognize that much work remains to create systems that ensure individually tailored, community-based, family-centered, and culturally competent services.

The majority of sites made more progress in the development of their infrastructures than in the development of their service delivery systems. As expected, sites typically developed an infrastructure first, and built services based on the supportive structures. Generally, more substantive changes occurred earlier in the funding cycle. Initially, changes were expected in the development of, or improvement of system infrastructures. As infrastructures improved, "gains" in expanded service delivery capacities were noted in many sites. As sites matured, growth in infrastructure tended to level off, as sites were more likely to modify or make adjustments to existing structures in order to further optimize service delivery capacities. Change continued to characterize the service delivery domain as grantees responded to the needs of the children, families, and communities they served.

Infrastructure Development

Within a system of care, many attributes comprise the system-level infrastructure. Infrastructure is driven by a set of goals shared among core child-serving agencies, service providers, and families. A defined target population appropriately identifies children and families in need of services, and the catchment area to be served. The system is community based, and is governed by an empowered interagency structure which works to develop a service array that is both comprehensive and tailored to build on the strengths of the families and community. Human resources are developed to meet these goals, and case review occurs to ensure application and support of system-of-care principles are provided for the children and families. Communication networks are established to support information sharing, and funding patterns support integrated, individualized services. Finally, evaluation is used to monitor system development and progress in order to provide continuous quality improvement. Generally, all of the infrastructure attributes were enhanced, although the level of enhancement for each attribute varied by site. Some of the key elements of this development are highlighted below.

Community Based. Systems of care must be responsive to community needs. To accomplish this, systems need local determination of the organization and array of services offered to children and their families. Community-based services enable the system to serve children in the community, thus reducing inappropriately restrictive, out-of-community care. Community-based services should be conveniently located throughout the catchment area, focus on local children and their families, and reflect the input of a variety of community representatives. Most sites were making progress toward achieving this goal.

Sites continued to have success in building services to enable them to keep children in the community, although few were able to formally document the reductions in out-of-community placements overall. Sites generally made progress in offering services throughout their catchment areas. Even sites that serve primarily rural areas, like the North Dakota sites, were able to offer services in multiple locations throughout the area. Sites were able to do this primarily by "thinking beyond the traditional office building." Most sites reported offering services in a range of settings, such as providing services in schools or homes. Some sites provided services in a wider variety of settings, including churches and community centers.

Generally, systems of care operated with a relatively high level of local control, such that community needs were important factors in the system's development. Although almost half of the systems of care involved the community in the decision-making processes to a partial degree, most sites reported the need to increase the active involvement of the community. Only a few sites had community representatives active on their interagency structures or governing boards. For example, in Bismarck, North Dakota, and Parsons, Kansas, local businesses and churches had representatives on the interagency structure who helped to construct a common vision for helping children and their families. In Burlington, Vermont, Catholic Charities was involved. Providence, Rhode Island, and Mott Haven, New York, were two examples of successful partnerships created among public and private agencies to work in the community. Washington County, Rhode Island; Milwaukee, Wisconsin; and Bismarck, North Dakota, were among sites that actively involved police departments in their system-of-care activities.

Other approaches sites used to involve their communities included:

• In Alexandria, Virginia, VISTA volunteers were used to help with outreach and providing services.
• In Lane County, Oregon; Riverside County, California; and Three Townships, Illinois, special staff positions were created to work in the community to access existing resources and services.
• Napa County, California, developed a program with the local police department to take participating children on diving expeditions.
• Charleston, South Carolina, involved the mayor, and utilized the public relations resources of the mayors office to raise community awareness.

"The community is involved in our system of care. We work with chamber of commerce and businesses on vocational training. Our goal is to get and keep kids off the streets as adults. The system-of-care staff are team players, the private agencies are very cooperative. The community is reclaiming these kids."

— Direct Service Provider

In Baltimore, Maryland, the system of care is building a partnership with the community. Churches, civic groups, community action agencies, and community service organizations participate in system management. Directly incorporating the community, the system employs neighborhood liaisons, trained paraprofessionals who often have grown up in the neighborhoods in which they work, to work on teams with clinicians to serve children and families. The liaisons know the community and its values and norms, and they are able to access community-based resources such as church food and furniture banks and community-based health screening programs.

Interagency Structure. In a system of care, an interagency structure is defined as a consortium of core agency, provider, family, and community representatives with governance, program planning, and budgetary authority. In a mature system of care the interagency structure operates in a systematic manner (e.g., regular meetings) and participant roles and functions are institutionalized as specified in formal interagency agreements. As a result, broad-based and meaningful participation guides the management of the system of care. System-of-care sites exhibited wide variation in the implementation of these concepts.

Participation. All sites included the required child-serving agencies on their interagency structures. However the strength of the partnership and the degree of participation varied. Charleston, South Carolina, was one site that was successful in fully engaging the partner agencies. There, the leadership of the structure rotated among the core agencies, fully engaging participants and increasing "buy-in." Other sites, however, have had difficulties. Although the problems engaging child-serving agencies varied, many sites reported barriers in fully engaging the school systems. Communities were typically served by multiple school districts with no centralized leadership. In Mott Haven, New York, for example, school representation was considered minimal at best. In Solano County, California, one school district was fully committed to system-of-care principles, but other districts created major barriers for children and families.

All interagency structures had at least one family representative. However, the decision-making authority given to these representatives varied widely. In some sites like Stark County, Ohio, meetings could not be held unless the family representative was present. Other sites, such as Providence, Rhode Island, made concerted efforts to use understandable language and avoid professional jargon at meetings. Yet in other sites, families reported feeling marginalized; they served as advisors rather than having full voting authority.

"Families are afraid of losing services if they get involved with the system management. Families feel they can't say anything against the system when the agency managers hold the purse strings. This mind set needs to be changed." — Family Representative

Although a few sites, like Waianae Coast, Hawaii, encouraged many families to be involved on interagency structures, few sites had more than a handful of family members active at the management level. Some sites only allowed one family representative to be active in interagency meetings. In those sites, concern was voiced that the diversity among families was not represented. As one family representative emphasized, "one person cannot represent all families' perspectives." In some sites, one family member served as the family representative filling all roles. This raised the concern that the one person is stretched too thin for family input to be truly effective.

Organizational Structure. Sites configured their interagency structures in many different ways. Some sites, like Napa County, California, had small groups composed of leaders from core agencies and family organizations, while other sites, like neighboring Sonoma County, California, had large interagency structures, involving many public agency representatives, private providers, and community groups.

Sites' interagency structures often had multiple tiers. For example, in Mott Haven, New York, and Burlington, Vermont, there were two structures: one structure composed of top managers who made budget and overall policy decisions and a second structure composed of line staff who worked to operationalize these decisions and revise procedures. In North Carolina, three levels of interagency structures operated: one at the state level addressed policies at the highest level; a second at the grant level (encompassing two catchment areas within the grant); and a third at the local-level that governed system-of-care operations in each catchment area.

Authority. In only a few sites is the interagency structure fully empowered to make system management and budget decisions. Further, some confusion about the role of the interagency structure still existed in many sites. In some sites, like Santa Barbara County, California, the structure was seen primarily as an information exchange mechanism. In other sites, the structure was strictly an advisory body, where the lead agency head still made all decisions. In yet other systems of care, participants in the structures had no clear understanding of the role of the structure or their responsibilities in it. To counter these problems, sites reorganized and restructured their interagency structures over the past year, reassessing their roles and responsibilities. Four sites, the Three Townships, Illinois; Maine; Minot, North Dakota; and Philadelphia, Pennsylvania, at the time of the site visit, were undergoing major reorganizations of their structures necessitated by changes in program operation.

Interagency structures were used as vehicles to involve the community in the system-of-care decision-making process. Among the many examples, youth were involved in Waianae Coast, Hawaii, and Solano County, California. St. Johnsbury, Vermont, had a special youth advisory group. Waianae Coast had also included a community elder on the structure. University representatives were included in North Carolina; Wichita, Kansas; and Baltimore, Maryland. Head Start and representatives from Early, Periodic, Screening Testing and Diagnosis (EPSTD) programs were involved in Minot, North Dakota, and in many of the California sites.

Interagency Agreements. Importantly, all sites had agreements among at least some of the core agencies. Almost half of the grantees had formal interagency agreements among the multiple participants in the system of care. Some sites, like Burlington, Vermont, were in the process of developing such agreements. A few sites, like Santa Barbara County,

California, felt that informal agreements permit flexibility that written agreements do not.

In Wichita, Kansas, the interagency structure is institutionalizing system-of-care concepts. A detailed memorandum of agreement exists among all of the participating agencies, public and private, and provides a common statement of philosophy and operational procedures. The interagency structure is comprised of leaders from the agencies and organization and is empowered to develop policies and allocate resources to operationalize the system-of-care goals. Members act as liaisons for their agencies to operationalize the decisions made in meetings.

Service Array. All sites reported using CMHS grant funds to expand their service arrays, using funds to build a continuum that reflected a diversity of mental health and non-mental health services. Sites expanded both the number and the types of services available in the system of care and the system's service capacity.

Expanding Services. Sites had actively expanded their service arrays, especially the array of mental health services, such that almost all sites were able to offer the full continuum of core mental health services specified in the original Request For Applications (diagnostic and evaluation services, outpatient services, 24-hour emergency services, intensive home-based services, intensive day treatment services, respite care, therapeutic foster care, transition services). However, many respondents reported continuing difficulties in offering adequate therapeutic foster care and respite services due to difficulties in recruiting qualified providers.

"This grant has brought out the creativeness in all of the agencies. We have new services that no one ever thought of before." — Case Manager

Sites had more difficulty in developing the array of non-mental health services. No site had fully achieved the ideal service array for a system of care, and most sites reported gaps in their services. However, some sites had been active in expanding their service arrays by enlisting private providers already operating in the community, such as the YMCA in Washington County, Rhode Island, and the Boys and Girls Clubs, in Providence, Rhode Island, and Solano County, California. St. Johnsbury, Vermont, developed a mini-grant program to help existing agencies develop and expand service programs.

The family-centered interviews found that parents expressed a need and desire for peer support and parent support groups. Even where support groups existed, parents often expressed the need for more.

Innovative Services. Many sites had worked to develop innovative and creative services. A few of the many examples seen during the 1996 site visit are described here.

• The Sexual Abuse Treatment Options Program (STOP) is working to help children and families in Parsons, Kansas. Offered through the Family Life Center, the program provides treatment for victims and family members, treatment for adult offenders, and treatment for juvenile offenders. The program philosophy is "to STOP sexual abuse through interrupting the abuse cycle, and healing the victim through restitution." There are also sexual abuse specialists in each of the five mental health centers. These staff meet monthly to share expertise and to build better strategies for serving children and families where sexual abuse is an issue.
• Napa County, California, offers a unique program for many of the youth participating in the system. In conjunction with the Boys and Girls Club, a vocational program called 'Jammin' helps prepare young adults for the workforce. Through this program, a company that makes jam operates a work experience program for adolescents. The youth are involved with all aspects of running the company, from procuring the grapes to advertising the final product. Other supportive services, such as counseling, are offered to help the youth remain and grow in the program.
• The Caminar Program in Solano, California, is an independent living program helping 18- to 22-year-olds with serious emotional disorders move into apartments and learn life skills, such as cooking, shopping, budgeting, and using public transportation. Teaming with youth and adult mental health service providers and county vocational instructors, program staff help the youth transition into the adult service system jobs. The program provides intensive support to teach the youth social interaction skills.
• The McKim Art Program in Baltimore offers youth from the system of care an after-school art experience. The "McKim Kidz" learn to express their creativity through photography, ceramics, and horticulture projects while learning social skills and building their confidence and self-esteem.
• Family Resource Developers in the Lyons, Riverside, and Proviso Townships in Illinois, use a wraparound approach to access community-based services and supports. Family resource developers assist community groups in developing nontraditional services, such as recreation programs, tutoring, and family support programs. Throughout their work, they teach families to locate and access community services, empowering families to operate independently of the public program.
• In Riverside, California, an innovative collaboration with the Office of Education and school districts has developed through the Healthy Start program. These programs are offered at local school sites and provide a full range of health, mental health, parent education, and substance abuse services to children and their families. Riverside is one of 13 sites that offer substance abuse services as part of their service array; however, most sites reported the need to develop or expand such services.

Findings from the family-centered interviews also offered examples of innovative services available through flexible funding. Families reported that case managers were able to help them pay for emergencies and other support services to bolster the strengths and interests of the children or to meet the concrete needs of the family. A number of case managers reported access to flexible funds to meet these needs.

Service Delivery Development

Flexible funds were used with one family to replace the locks on their new home so they felt more secure. Funds were also used with this family to purchase medication to deal with head lice. Another innovative use of flexible funds was to purchase an alarm watch for a child who was always late getting up and to school.

Overall, sites exhibited many improvements in providing services according to system-of-care principles. Within a system of care, service delivery at the child and family level is characterized by many attributes. Service delivery is managed through a case management process that facilitates a match between the individual needs of children and families and the types and intensity of services available to them. Services are accessible to the children and families, and service delivery coordination occurs systematically across agencies. Services are provided in a family-centered manner, such that families are fully involved in all decision-making processes. Services are individualized, and service planning is tailored to each family's unique strengths and needs. Finally, culturally competent services are provided, showing sensitivity and respect to the cultural differences of children and families. While sites have generally made improvements in all of the attributes related to service delivery, the following section highlights the improvements in the coordination of services through the use of case management systems, interagency planning processes, and shared mechanisms for providing services, and the increases in family involvement and cultural competence.

Interagency Service Coordination. Coordination of the delivery of services to a child and family is accomplished through three attributes: case management, service planning processes, and service delivery coordination processes. As these three attributes improve, duplication is being reduced. Although sites generally showed improvement in these functions, much work is still to be done to operate a coordinated system of care.

"We have a great case manager. She assists in calling and getting things set up. She assists with getting bills paid. She even helped me find a doctor. I don't have to worry that she'll follow through." — Family Member

Case Management. All sites had implemented some type of case management system, and case managers were key to the coordination of services in most sites. In many sites, all children and families in the system of care were assigned a case manager/service coordinator. In other sites, such as Solano County, California, a case manager was only assigned when a child was assessed to be at high risk of out-of-home placement.

"...they work so tightly together, it seems like one piece. When I was referred to program, they really tried to listen to my problems. We need more agencies like this one, I feel stronger with the system of care at my side. This is the best way to work with the community. The program keeps improving and growing." — Family Member

Most sites increased the numbers of people employed (either staff or through contracts) as case managers and were able to provide such services to those families needing them. At most sites, case managers considered their caseloads appropriate, while at only a few sites the typical case loads were so large as to be unmanageable. Further, case managers were generally able to vary the level or degree of case management services to match the changing needs of the families served. Overall in most sites, case managers were described by the families as dedicated, dynamic, and respectful.

"I've never met anyone more dedicated to his job than him [the case manager]. He came into our lives when we most needed it. He brought me a lot of understanding...I felt protected by him. He went out of his way to help us..." — Family Member

This sentiment was echoed by families who participated in the family-centered interviews. Families reported that the case manager played a central role in overall support, service provision and coordination, providing direct linkages between families and providers.

Sites accomplish the case management function in a variety of ways. The following are examples.

• In the Three Townships, Illinois; Napa County, California; and Mott Haven, New York, teams of providers work together to provide case management services, with the team members supporting each other and providing different, often interdisciplinary, perspectives to help the families.
• In Baltimore, Maryland, a therapist and a neighborhood liaison form a team to ensure appropriate clinical and social and supportive services are arranged and provided.
• In Alexandria, Virginia, and the North Dakota sites, system-of-care case managers supplement the resources of existing staff assigned from the core agencies to coordinate services across the participating programs.
• In Milwaukee, Wisconsin, one case manager is assigned from a contracting agency. This case manager has full responsibility for service coordination and facilitation.
• In Charleston, South Carolina, and Riverside County, California, the primary therapist also acts as the case manager in coordinating care that is consistent with treatment goals.
• In Waianae Coast, Hawaii, and Las Cruces, New Mexico, a family may choose to be its own case manager and act with full authority afforded staff case managers.
• In Lane County, Oregon, staff are designated as rural extenders. Working with centrally based case managers, the rural extenders bring services to outer areas of the county.
• In San Mateo County, California, a youth case manager is specifically designated to work with 16- to 22-year-olds to help transition them into adult services.

Individualized Service Planning. Another key coordination tool used by many sites is the individualized service planning process. Within a system of care, service planning is the process by which services are identified for and by children and their families and tailored on the basis of the families' unique strengths and needs. The service plan is created by a combination of inputs from families, youth, and multiple agencies and cross-disciplinary service providers; its content is detailed, with specific, achievable, strengths-based behavior and treatment goals.

Virtually all sites had an individualized service planning process that was designed to involve representatives from multiple agencies, and the family. However, these individualized service planning processes had not resulted in every family receiving coordinated, individualized care tailored to their specific needs. There were children still receiving traditional mental health services (e.g., outpatient therapy, etc.). Site respondents explained that, due to limited capacity of many of the non-traditional services, tailoring services for each family was not possible. Other respondents explained that not all case managers were aware of the full array of services, and therefore did not access them for the families and children they serve.

A number of families indicated they had been on waiting lists for several months for mental health counseling, housing, and respite care. Many families indicated that needed summer school and after school programs, jobs for teens, and appropriate school placements were not likely to be accessed.

Families and providers participating in the family-centered interviews often reported a significant lag time for families to get services beyond those directly provided by the specific mental health system being reviewed.

Still, some innovative ideas had been developed, especially with regard to developing the planning process. Several sites, including Napa County, California; Solano County, California; Milwaukee, Wisconsin; and North Carolina have developed formats that encourage the service planning team to focus on the family's strengths and address a range of life domains in the process.

"Before, three different agencies could be providing counseling to one family, and never realize it. Now, we're all sharing information. Families are "Our Families" now. We know what others are doing and we are reducing the duplication of services." — Agency Manager

Coordinated processes among across agencies. For the individualized service plans to be implemented, cross-agency coordination of a child and family's services is essential. Delivery of services in a coordinated manner is achieved through: agreed-upon eligibility criteria and shared intake processes across core agencies, systematic information sharing, routine updates, and recording of all services received.

Examples of specific mechanisms to improve coordination include:

• Solano County, California's common, over-the-phone intake process is cited as being family friendly as well as being a one-stop coordinated process.
• In Baltimore, Maryland, a universal intake form is used at all the participating agencies. Similarly, in St. Johnsbury, Vermont, a multi-agency release form is used.
• Charleston, South Carolina, currently uses a common service planning form in all of the system-of-care agencies, and Napa County, California, is in the process of designing a form.
• Stark County, Ohio, uses a service planning form that creates multiple copies that are given directly to the service team. In addition, the record keeping office of each agency also receives a fax listing new entrants into the system of care, so that all records can be gathered.

Staff positions had also been developed to increase coordination. In Baltimore, Maryland, special positions were created. Individuals holding these positions acted as liaisons with the agencies. These liaisons worked with agency staff and managers to help coordinate services. In North Carolina, a staff person had been designated to problem solve coordination issues at the system level. This person used information obtained from the quality assurance process to identify coordination problems.

Although these mechanisms were cited as useful, developing an institutionalized system for multi-agency coordination was difficult. Agency patterns for service delivery were firmly established in policy as well as in agency culture. As one respondent described it, the "agency processes are entrenched." To help increase coordination many sites, such as Lane County, Oregon; Napa County, California; and Santa Barbara County, California had physically relocated staff from a variety of participating agencies into one central area. In other sites, such as Ventura County, California, out-stationing system-of-care staff into other agencies had been used as a strategy to improve coordination. While both of these strategies were praised for facilitating informal and ad hoc information sharing, little is being done to fully coordinate service provision in a systemic way.

One parent expressed concern that no one was willing to ask "hard questions" about what was being done, particularly why her son was on Ritalin when it was not helpful. She expressed concern that providers "are not honest with each other." In another situation, mental health therapists working with a family did not seem to know much about problems the child was having in his special school placement.

The family-centered interviews also revealed some dissatisfaction among families with the coordination of services and found that coordination across agencies, particularly with individual schools, was underdeveloped in many sites visited. This is also consistent with the finding presented earlier in this report that many sites have encountered difficulty in engaging school systems in their interagency structures.

There are a number of reasons why the difficulty in coordinating with schools persists, including: multiple school districts within one system-of-care catchment area make it particularly challenging to work with individual schools; the different hours and school year schedule affect the willingness of education staff to participate in system governance; schools are highly regulated and the union can be a barrier to innovation; and the high financial cost of special education services mitigates against schools actively identifying children with serious emotional disturbances. Grantees that have had success in coordinating with schools have had a prior joint project where a relationship had already been established, use a school-based model such as the one used by the Hawaii and Baltimore grantees, or have figured out how to work creatively within the limitations on schools and classroom teachers.

Another key coordination issue for families was the seamlessness of services, i.e., the coordination process should assure smooth transitions among service providers. Perhaps because many sites were still forming their relatively new systems of care, a process to ensure smooth transitions among service providers was not formalized. Transitions typically were made in an ad hoc way, with the new service providers talking to the old service providers informally. In at least a few sites, records were not transferred, so they had to be recreated. Philadelphia took steps to improve this process greatly by creating a special position to work with cases in transition and to generally facilitate and focus the process.

In Burlington, Vermont, service delivery coordination is promoted by a team of front-line direct service staff in the system of care. This team convenes monthly to discuss day-to-day operations issues impacting the system-of-care agencies. The group also holds monthly meetings to review utilization trends and to provide cross-agency support for the implementation of the goals of the system of care. The team has been effective at promoting information sharing and in increasing the awareness of all the core agencies and service providers about various aspects of each of the agencies.

"My opinions and knowledge of my family are more respected than I expected them to be. I can safely and honestly say how I feel about a service. I have been met with openness at the center, not with attitudes of ‘I'm the professional.' The system-of-care staff have listened to us." — Family Member

Family Centered. Systems of care should incorporate the family as the service provision unit and families should be fully involved in all decision-making. Almost all sites had an active family organization in the community, and all sites reported that they involved families in system management and in planning the care for their own families. Most sites had written policies to involve families. However, the depth of family involvement varied significantly among sites.

Only a few sites made great strides in operationalizing the concept of family centeredness. Some sites looked to families directly to improve the system's connections to families. Several sites, like Charleston, South Carolina; Mott Haven, New York; and Lane County, Oregon, hired family advocates to help families become involved with their children's care and service planning. Examples of parent mentors helping families with the system include Burlington, Vermont, and Stark County, Ohio.

"Overall there is a sense of partnership between families and providers A lot of people are committed to helping. We have a vision and keep going." — Family Representative

Other sites instituted special processes to involve families. In many sites, including the North Dakota sites and Milwaukee, Wisconsin, families select (and may reject) members of their service teams. Many sites had families select times for meetings and hold meetings in convenient places for families. Stipends were used to compensate families for their time in some sites including Philadelphia, Pennsylvania; Providence, Rhode Island; and Las Cruces, New Mexico. Child care and transportation were also provided for families.

Raising awareness of services and programs is often seen as an essential step to engaging families. To this end, Alexandria, Virginia, hosted a vendors fair in which local providers explained their programs. Stark County, Ohio, held a similar fair for families where over 2,000 people attended the event. Another example of raising awareness is through the use of a directory of services, as Minot, North Dakota, had developed.

Systems of care were beginning to take steps to actively promote the development of family advocacy and empowerment. Some of the innovative ideas for supporting and empowering families included the following:

• In Burlington, Vermont; Baltimore, Maryland; and Philadelphia, Pennsylvania, grandparent support groups focused on the needs of caregivers other than the biological parents (i.e., other kin).
• In Waianae Coast, Hawaii; Solano County, California; and Sonoma County, California, youth groups provided a mechanism for empowering young people to help define the services they needed.
• In Baltimore, Maryland, system-of-care intake packages included information about the family organization, and all families were actively invited to participate in a variety of support and advocacy activities.
• In Sonoma County, California, the family representative created a computerized data base of all families participating in the system and helped to develop a family advisory committee. The system engaged a professional facilitator to help the group of families define its goals and set priorities.
• In Riverside and Solano Counties, California, family organizations developed libraries to increase access to information. Solano County even offered computers to access on-line, Internet information.

While many challenges are still faced at the system level, the focus on changing attitudes among the individuals participating in the system of care was often cited as a strength of the system-of-care model. Families and representatives of family organizations praised certain individuals for adopting a family-centered perspective and respecting the decision-making authority of families. Many families reported they felt much less "blamed" since their participation in the system of care. Case managers were typically cited as being particularly responsive to families. Changing attitudes towards families was seen as having many effects. As one service provider explained "if you involve the families in the decision-making, they will buy into the goals (of the plan). They work with you, not against you." Family respondents, although not all, praised system-of-care managers, often citing "the open door" policy as proof of system receptiveness to their concerns.

In Waianae Coast, Hawaii, the system of care has expanded efforts to ensure that parents have a voice and feel that they are truly driving the service provision process. A unique aspect of Hawaii's wraparound process is the flexibility afforded parents to designate a wrap facilitator or to act as their own wrap facilitator/service coordinator. Hawaii Families as Allies has been instrumental in providing technical assistance to direct service providers on developing parent-professional collaborative relationships and has involved more than 4,000 caregivers and parents in workshops, support groups, and family gatherings.

Another way systems of care involved families was by giving families choices among their service providers. In many sites, families could select specific individuals who would then be contracted to provide services. For example, a family friend could be hired to be a child's informal mentor. While this process was reported to be popular with children and families, contracting and employment issues arose in some places, such as Bismarck, North Dakota. Faced with a similar situation, Milwaukee, Wisconsin, provided vouchers that families could use to pay individually selected providers. A management service was used to process these vouchers and ensure proper accountability.

One family interviewed had two young children who exhibited a lot of acting out behaviors. When the older child became a client of the system-of-care, staff quickly realized that to be effective, interventions had to target all the children and the mother. Services were structured to meet each of their needs individually and to improve their sibling and parent/child interactions. Comprehensive services delivered to that family included 2–3 hours a day respite provided by the child's grandparents and paid for by the system of care; individual and sibling counseling; transportation; parenting education; personal hygiene education; outpatient therapy for child and mother (separately); after school activities; and encouragement for the mother to continue her medication and treatment.

Another indicator of family-centered care was the extent to which the system addressed the needs of all family members. The family-centered interviews suggested positive progress in this area. In many of the sites visited, providers were assessing and providing services for the whole family, including younger siblings and caregiver(s), not just the focal child.

Although increased family involvement was reported in all the sites, areas for improvement remained. In a few sites, the extent of the commitment to engaging families was represented by the phrase "parents must sign the form," referring to the extent of their role in service planning. Some sites required family attendance at meetings, but failed to provide the families with information needed to actively participate; families felt intimidated by the processes. In other sites, only families who fully cooperated with the professionals were engaged, other families who questioned professional decisions were labeled as "uncooperative," and their choices were not respected.

Among the sites, major variations existed in the awareness that families had about their systems of care and systems of care theory. In a few sites, the families were aware of system-of-care services and operations and were active in national organizations: they had learned "what to ask for." In other sites, families were less aware of the possibilities, and therefore "accepted what was given," pleased to have even minimal levels of service. Although respondents generally acknowledged that families had mechanisms to make formal complaints, few systems had a process to actively solicit feedback to improve services.

Further, most sites did not fully engage all families in the target population. While educated, articulate families who had knowledge of social programs were involved and actively engaged, families from diverse cultures were often marginalized. In some situations, these families were even excluded from participation. These issues are discussed below.

Cultural Competence. A system of care is culturally competent when it is sensitive and responsive to the diversity among the children and families they serve. Cultural background, race, religion, national origin, sexual orientation, education, and socioeconomic status are just some of the characteristics that shape perspectives and influence behavior toward others. These characteristics shape how families define mental health concerns, whom they turn to for help, how they respond to services, and how they manage life cycle transitions, as well as how systems and providers respond to children and their families. Systems of care recognize the inherent diversity in the communities they serve. This recognition goes beyond the provision of translators and in mature systems of care is characterized by formalized policies, procedures, outreach, and advocacy efforts, training, service array, the service delivery framework, and the recognition of the importance of existing community support networks (i.e., churches, extended kinship networks, social organizations, etc.).

Overall, sites still faced many challenges in achieving this attribute. All of the sites faced different issues regarding the cultures of their communities--there was no simple "fix" or blueprint for achieving cultural competence. A few sites made significant attempts at improving cultural competence. However, improvement in all sites was needed, and respondents in most sites recognized this need.

"We [the system of care] recognize when we don't understand the cultural needs of the community and seek out assistance, we get help. We don't quit learning, we keep thinking about HOW we do our jobs, and are working well as a team with our community." — Family Representative

To address cultural issues, sites used differing strategies. In The Three Townships, Illinois, and Stark County, Ohio, for example, cultural competence was seen as an extension of working with individual families and meeting all of their needs. Baltimore, Maryland, and Burlington, Vermont, drew on the strengths of community organizations to define and meet cultural needs. Waianae Coast, Hawaii, focused its approach in building a system based on "natural caregivers" and community supports.

San Mateo County, California, has made cultural competence a high priority. Extensive policies guide the implementation of a culturally competent system of care. Further, staff recognize that cultural competence is an area requiring continual attention; they work to increase their knowledge through frequent interactions with the community and by attending training events. Through these efforts, outreach to communities of color has increased. Working with community helpers, the system has customized services to address various aspects of culture.

Riverside County, California; Alexandria, Virginia; and Wichita and Parsons, Kansas, created specific staff positions to address cultural competence needs. Santa Cruz County, California, planned to hire for this role. In North Dakota and Napa County, California, the family organization hired a person to increase awareness of services in the community and provide outreach to the target population. Riverside County, California, sponsored a summit meeting involving representatives of many cultural groups to problem solve. Charleston, South Carolina; Ventura County, California; and Lane County, Oregon, created special committees to address issues of culture.

A case manager and parent reported that he [case manager] was familiar with the town in Puerto Rico the family was from. He therefore understood their past and present experiences and could talk with the family about them in ways they were comfortable.

Findings from the family-centered interviews also suggested that among some sites there was positive development and a growing competence in the area of providing culturally competent services. In the sites visited, staff were bilingual and could readily communicate with families enrolled in the systems' services. Families reported that the mental health case managers were sensitive to their backgrounds, respecting the family's beliefs and values.

Lessons Learned

During the site visits, respondents were asked what lessons they had learned during the past year. Overall, certain themes emerged across virtually all of the sites. These are summarized below.

"It takes a lot more energy to develop a system of care than just a program." — Family Representative

Building a system of care takes more time than originally expected. Almost all respondents cited at least one partnership or process that took significantly longer than anticipated. In retrospect, respondents reported they wished they had planned longer time lines.

"Systems of care are a major shift in thinking, agencies are still struggling." — Family Representative

The second key lesson learned among the sites was that families need to be involved at all levels. Many respondents recognized that involvement of families is the hallmark of a system of care, and essential for system development and survival. Families bring knowledge and experience that is unparalleled and is available just by asking. Although acknowledging that learning to talk to and understand what families were saying often took time, professional staff repeatedly stated that they wished they had made concerted efforts to involve families sooner.

The third lesson commonly learned at sites was that the community needed to be involved. Often, public agencies were isolated from their communities, operating within the confines of policies and procedures designed to set them apart from the world around them. But systems of care were finding that they must make connections beyond the public offices. Communities were rich in resources. Although each of the system-of-care communities was very different, respondents reported that once they looked, they learned how rich their communities were. Respondents found that businesses, private agencies, civic organizations, churches, clubs, and voluntary associations had resources waiting to be tapped. A community-wide assessment was repeatedly recommended as a good first step for learning about the current and potential services available within the community. Repeating the assessment regularly was also cited as a way to keep knowledge current and dialogs open.

Another lesson many sites reported learning was that all levels of an organization needed to be engaged in the vision. Several systems of care found that while top managers agreed with system-of-care values, mid- and low-level managers were less aware of how these values should be implemented in their work. For example, family involvement was an accepted value, but how the service planning form should be revised to reflect this was a difficult task. Sites found that, in addition to policy change, procedures and even agency traditions had to be changed to be in accord with the new paradigm. Involving staff at all levels permitted comprehensive and effective planning for change.

Ultimately, the most important lesson that this program can demonstrate is whether a system-of-care approach makes a difference in improved outcomes among the children served. A significant aspect of the national evaluation is that it includes comparisons between those children and families served by CMHS-funded systems of care and those served by conventional service delivery systems. Findings from this component of the evaluation will provide important information on whether greater improvements in children's behavior and functioning can be attributed to the system-of-care approach compared to a more conventional service delivery approach. To determine this, a sample of children and families is being followed for a period of up to 2 years in three CMHS-funded system of care sites and three non-CMHS funded sites that appear to have made less progress toward adopting a system of care approach. These findings will not be available until the end of 1999.

Although much qualitative information has been derived from system-level site visits, ratings of system characteristics have not been directly linked to child and family outcomes at the CMHS sites. The psychometric characteristics of the systemness scale have not supported its use as a quantitative measure in the national evaluation. Qualitative information from systemness site visits will continue to be used to describe the development of systems of care while revisions are made to the existing measure to improve its underlying psychometric characteristics and quantitative utility. The revised index will be available for use beginning in late 1998.

Sustaining Systems of Care

The CMHS grant program provided for five-year grants, with increased match requirements for the final two years of the grant. Systems of care built through this grant program need to establish ways of sustaining the enhancement to their system.

Key to the system-of-care approach was the coordination among participating agencies to better serve families. Coordination among funding streams is essential to accomplish this, and also provides a stable funding base for when grant funds end. However, this aspect has not been achieved in many sites. Less than a fourth of sites have budgets that reflect financial contributions of some of the participating agencies. Only a few systems of care like Alexandria, Virginia, and Stark County, Ohio, were able to pool system-of-care funds. In some sites it is hoped that these participating agencies will assume the cost of a system-of-care staff position after the grant period ends. For example in Bismarck, North Dakota, and Lane County, Oregon, grant funds paid for the system-of-care staff to become established in the public agencies, but then the agencies assumed a higher percentage of the staff person's salary over time. In a different model, in Santa Barbara County, California, existing staff positions from participating agencies were being "redirected" to staff the system of care. For example, a parole officer assumed a system-of-care defined role while still being paid through the juvenile justice system. In many sites, however, participating agencies had less commitment. For example, participating agencies provided only office and indirect expenses for housing system-of-care staff, with no additional contributions.

Several sites were exploring outside funding sources in addition to the CMHS grant. Funds saved from diverting out-of-community placements were being used for system-of-care support in Milwaukee, Wisconsin, and in several California sites. Family preservation funds were used in some sites, like Burlington, Vermont, and Napa County, California. Napa County, California, also used special funds through their probation department. Several sites, including Baltimore, Maryland, and Ventura County, California, used Head Start grant funds to link system-of-care services for young children. Sites were applying for private grant funds as well. For example, Charleston, South Carolina, recently received a Kellogg grant to serve children and families.

One of the major challenges facing systems of care was the changing environment of all children and family service systems. Welfare reform, the move to managed care, and changes in Federal and state family support programs were issues that almost all sites faced. The uncertainty created by these changes limited some project staff's ability to plan effectively. Many respondents reported hesitation, opting for a wait and see attitude. A few sites, however, were pushing their visions forward and were working to anticipate, rather than simply respond to, the changing health care environment.

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