Since the inception of the values and principles of systems of care over fifteen years ago, the concept of "family involvement" has become widely accepted in children's mental health. However, defining specifically what family involvement is and establishing the infrastructure to recruit, train, sustain, and retain family involvement in systems of care has proven to be a challenging task. The first article in this column puts forth the foundation requirements for establishing the infrastructure necessary to achieve family involvement. We hope it will stimulate discussion, examination of current policy and practice, and action to establish effective family involvement in grant communities.

The Guidance for Applicants (GFA) for Comprehensive Community Mental Health Services for Children and Their Families Program establishes the context and the concept for family involvement for this program. Commitment to real family involvement is grounded in the belief "that families and consumers contribute significantly to successful outcomes and must be appropriately involved in the conceptualization, planning, implementation and evaluation of SAMHSA projects." The GFA's Program Goals further express these values by requiring applicants (and therefore funded grant communities) to specify how they will ensure "the full involvement and partnership of families in the planning, implementation, management, delivery and evaluation of the local service system."

Involving families in these four components requires that some kind of family-run entity be part of the infrastructure of the grant community. The Implementation Plan in the GFA suggests that this could be achieved by using grant resources to collaborate with an existing local or statewide family-run organization. If no such group exists, resources could be used to assist enrolled families in creating a parent support network or local parent support organization. There are two keys to success, regardless of which of the above strategies are used. The first is that the resulting group includes families whose children would be eligible to enroll in the system of care. The second is that the group must have the capacity to speak with an independent voice when it is representing families in grant community activities and decision making.

Once there is a family-run entity in the community, the infrastructure to establish its place as a partner in the system of care must be formally constructed. Achieving this partnership requires that we all make a significant paradigm shift. Providers who have been trained to be experts who are outstanding in their field need to learn how to share power and decision making with families whom they were trained to treat as "clients" who had limited capacity due to their disability. Families who have been accustomed to being treated as clients and deferring to those in authority or with specialized knowledge have to learn how to express what they have learned through personal (often painful and frustrating) experience as constructive proposals for change in policy or practice. All of us, practitioners and families alike, need to learn about the most current and effective practices and figure out together how to apply this knowledge to improve outcomes for the children and youth who live in our own communities.

Partnering is about sharing investment, risk, decision-making, power and responsibility. By way of illustrating this, consider for a moment a corporate environment in which dividends (and loses) are distributed among the partners according to the level of investment. Decision making power is directly related to the level of investment (stockholders with more shares have more power). Larger investors have a greater desire to insure the success of the enterprise and will hire the management they think can do the best job and hold them accountable for protecting their investment. In systems of care, families are the heavy investors. Family capital is the children they are raising and bringing to systems of care for help. Families (and youth) take on the greatest risk because if the system fails, they and their children suffer -- possibly for a lifetime.

This paradigm shift requires other partners to share power with and be accountable to families to a much greater extent than has ever occurred before. It requires forging new kinds of relationships that have not existed in the past. This means doing much more than making promises on paper and getting a perfunctory family sign-off. It means acting on those promises in formal ways (such as through by-laws, contracts letters of agreements, personnel policies) that establish continuity of family involvement over time -- making family involvement part of the system of care infrastructure.

This infrastructure insures that the partnership is sustained when there is change in leadership either in the system of care or the family-run organization. It means establishing vehicles for hearing and heeding a collective voice representing the families enrolled. This voice is fully empowered and readily identifies service goals and implementation strategies that promote needed changes. While this voice attends carefully to the expertise of other partners, it does not automatically defer to or depend exclusively on the needs, talents, philosophy, or mission of existing or powerful providers and agencies. An independent family voice in the community is essential for establishing and sustaining a system of care. Long-range planning must include strategies to sustain an independent family voice that will be both severest critic and staunchest supporter for a community's system of care.

One final clarification. There are many other ways to involve families in systems of care that are not part of the formal infrastructure. Among these is employing family members as staff (such as service coordinators, bookkeepers, or evaluators). Employing family members is certainly good practice that can contribute significantly to effective service delivery. However, family members who are staff employed by the grant community face a conflict of interest when they are expected to serve as family representatives at the system policy and decision making tables. Systems of care need to partner with independent family-run groups to build infrastructure for sustainable effective family involvement in the planning, implementation, management, delivery and evaluation of the local service system.

Done Reading? Read Part II of Families Matter! on Infrastructure for Family Involvment>>>