For decades, advocacy organizations and programs serving specialized populations have sought more effective ways of enhancing positive outcomes by involving and supporting family and youth in service planning, development, implementation, and evaluation. The child and youth with special health care needs arena drafted family centered care guidelines over two decades ago.
First introduced by the Association for the Care of Children's Health and further developed by federally sponsored Maternal and Child Health Bureau projects, the term family centered has become synonymous with the planning and development of services for children and youth with special health care needs. More recently, organizations and programs serving children and youth with mental health disorders began a national movement to institutionalize a family driven; youth guided system of care through support, resources, and facilitation by the Substance Abuse and Mental Health Services Administration. Family organizations and population representatives have crafted and refined the terms to ensure that systems of care are responsive to the real needs of families and built upon a philosophy that families and their children should be respected as experts in their needs; serving as critical partners in the planning, development, and implementation of all services.
Each approach carries common denominators that are built upon culturally competent, community based, and coordinated care that is driven by family needs, strengths, and choices. By blending these commonalities and integrating unique and valuable principles; a new term, family driven-centered, emerges to capture and reflect an intent to ensure that all children, families, and youth have access to care that responds to their individual needs, choices, and direction.
Family driven - centered efforts promote the health and well-being of all children, youth and their families through collaborative partnerships where families and youth have primary decision-making roles in their care, services, and the policies and procedures governing care for all children in their community, state, tribe, territory and nation. This standard of practice results in high quality services that honor strengths, cultures, traditions, experience and expertise. Family driven-centered principles ensure that:
- The family is acknowledged as the constant in a child's life; building on their strengths and promoting an individualized and developmental approach.
- Family and youth experiences, vision and goals, perceptions of strengths and needs, and their guidance about what will make them comfortable steer decision-making at all levels of service and system design, implementation, and evaluation.
- Families and professionals form partnerships and work together in the best interest of the child or youth and family. This partnership serves as a foundation; where everyone respects the skills and expertise brought to the relationship, trust is acknowledged as fundamental, and there is a willingness to negotiate. As children grow, youth assumes a partnership role.
- Families and youth are given accurate, understandable, and complete information and data with sound professional expertise in a supportive environment so they can make informed decisions, set goals, and share the responsibility for outcomes.
- Children and youth are supported to learn about and participate in his/her care and decision-making and as they transition to adulthood.
- Funding mechanisms allow families and youth to have choices within the context of their home, community, and least restrictive environment.
- Families engage in peer support activities to reduce isolation, gather and disseminate accurate information, and strengthen the family voice.
- Families and youth are respected and recognized as a force for systems transformation and provide direction for decisions that impact funding for services, treatments, and supports.
- Family and youth run organizations receive resources and funds to support and sustain an infrastructure that is essential to an independent family and youth voice in their communities, states, tribes, territories, and the nation.
- Administrators and staff actively demonstrate their partnerships with all families and youth by sharing power, information, resources, authority, responsibility, and control.
- Administrators allocate staff, training, support and resources to make family driven-centered practices work at all levels where programs, services and supports are developed, implemented, and evaluated.
- Providers adjust their practices and approaches from provider-driven to family driven-centered.
- Barriers, discrimination and stigma are removed through outreach, understanding, and information.
- Meetings and service provision occur in culturally and linguistically competent environments where family and youth voices are heard and valued, everyone is respected and trusted, and it is safe for everyone to speak honestly.
- Everyone who connects with children, youth, and families embrace, value, honor, and celebrate diversity and continually advance their own cultural and linguistic responsiveness.
Families, youth, and systems can anticipate shifts in presentation and application as the guiding principles of family driven-centered care continue to serve as an indicator of programs that are responsive to the needs, choices, and direction of the populations they serve.
