Guest Blog - Trina W. Osher, Huff Osher Consulting, Inc., Gary Blau, Chief, Child Adolescent & Family Branch, SAMHSA, Sandra Spencer, Executive Director, National Federation of Families for Children’s Mental Health, David Osher, Vice President, American Institutes for Research
Thanks to Elaine Slaton in her recent Morning Zen post for reminding us that as time passes and environments change we should reexamine the principles we stand by and the frameworks we use to operationalize them – in this case, the definition of family-driven care. As the principal authors of the current working definition of family-driven care (which was developed after 11 iterations) we have done so and emphatically reply YES – Family-driven care as a concept and practice is even more relevant today than it was when first introduced. The term represents the evolution from a time when professionals blamed parents and caregivers for a child’s problems to a philosophy that engages and embraces parents and caregivers as part of the solution. We believe that health care reform has finally caught up with the paradigm shift called for in the definition of family-driven care and rather than abandon the definition or principles we should be seeking to improve the practice and implementation of family-driven care.
The Institute for Patient and Family Centered Care defines patient- and family-centered care as “an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients, and families. It redefines the relationships in health care.” (http://www.ipfcc.org/faq.html). One of the 10 principles of family-driven care states that, “Families and youth, providers and administrators embrace the concept of sharing decision-making and responsibility for outcomes.” The congruence with regard to relationships, decision making, and responsibilities is striking.
Kristin Carman made a similar observation in her comment that, “True patient- and family-centered care and patient and family engagement will require a cultural shift so that we listen to and respect patients’ and families’ experiences, opinions, and insights and give them equal weight in the process. In other words, we need to give them authority that is commensurate with their responsibility.” This is the very basis of family-driven care and we should be working together to make this more of a reality.
We also point out that there is data to support the importance of family-driven care. We know, from national evaluation data on systems of care that fidelity to a family-driven care approach leads to better outcomes for youth demonstrating that active and substantive family (or caregiver) participation in treatment increases youth strengths and reduces caregiver strain (Manteuffel, 2010 ). We know from a 2007 report on systems of care implementation in Florida written by Al Duchnowski and Krista Kutash that “While implementing family-driven care in Florida will cost more in terms of time, resources, and effort, the lack of effective family-driven care will cost significantly more in terms of continuing poor outcomes for children, a new generation of dependent young adults, and increasing expenditures for custodial care in Florida’s prisons. This scenario is supported by over ten years of longitudinal research.” (Family Driven Care, Are We There Yet? p. 38)
An area of clear agreement is that we too lament the apparent absence of family participation at the AHRQ conference – and in other venues as well. It is not because families have no interest or believe their voice is irrelevant. In many cases it is because families and family organizations were unaware of the meeting, or were not invited. In some cases it is a resource issue. National family-run organizations are few and underfunded and it takes resources to attend the hundreds of conferences and meetings where the message of family-driven care needs to be heard. It takes resources to influence policy and it takes partnerships to improve practice. All systems, agencies, and professions, not just families and family-run organizations must embrace and carry the message that family-driven care is critical in all child serving systems and community support efforts.
We agree with Teresa King’s comments that, “The real work comes in putting theory into practice in the world today.” And we know that scaling up changes in organizational culture and behavior in professional bureaucracies takes time and support. While implementation to date has been insufficient, family-driven care has taken hold with good effect in some places. For example:
- The Arizona Department of Health Services/Division of Health Services has contracted with family organizations to ensure that the family voice is represented at all levels of decision-making within the agency.
- Alabama’s Department of Mental Health/Mental Retardation (DMH/MR) restructured its strategic planning process to move the state toward a consumer and family driven system. Through input from families and consumers across the state, DMH/MR developed a process that enabled more families and consumers to have an extensive voice in statewide planning for service delivery and systems change on a local, regional and state level.
- In Michigan, family organization worked with the Department of Community Health and other partners to create policies, funding and accountability mechanisms that support family driven practices.
- The Governor of Tennessee signed Legislation (Public Chapter 1062) establishing a “Council on Mental Health” which has to have representation of family members. The legislation also requires the statewide system to reflect principles of family-driven care.
- Perhaps most significantly SAMHSA promoted family driven practice in community based systems of care.
Just because something is hard to do is no reason to stop trying. Rather, it is important to use data determine what is not changing and why and then to employ strategies to make the change happen. At the same time it is important to arm advocates for change – both families and professionals—with the tools to support change and its scaling up, nationwide. More attention needs to be placed on the conditions necessary to support family driven care and practice and how to implement it. These were operationalized in the original work as the following specific characteristics.
- Family and youth experiences, their visions and goals, their perceptions of strengths and needs, and their guidance about what will make them comfortable steer decision making about all aspects of service and system design, operation, and evaluation.
- Family-run organizations receive resources and funds to support and sustain the infrastructure that is essential to insure an independent family voice in their communities, states, tribes, territories, and the nation.
- Meetings and service provision happen 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.
- Administrators and staff actively demonstrate their partnerships with all families and youth by sharing power, resources, authority, responsibility, and control with them.
- Families and youth have access to useful, usable, and understandable information and data, as well as sound professional expertise so they have good information to make decisions.
- Funding mechanisms allow families and youth to have choices.
- All children, youth, and families have a biological, adoptive, foster, or surrogate family voice advocating on their behalf.
Maintaining and implementing family-driven care in a client and family centered health care reform environment means insuring that families have a voice and that their experience and perspectives help shape policy decisions and practice. Having a clear definition from which to work helps ensure active and effective participation. Family members new to the service system as well as service providers, administrators, and policy makers need training, coaching, and support on the concept of family-driven. So, we would argue that instead of thinking the definition is outdated; we should be renewing our commitment to increasing its usability, developing tools and strategies for its effective implementation, and conducting research on its impact. There will be no meaningful system change without families, and families must lead the way by defining and developing ways to drive service delivery.