Guest blogger - Alice "Elaine" Slaton ~ Since the late 1980’s, when the children’s mental health family movement came onto the national scene, it has tried to reverse the perception of fault being placed on the shoulders of the parents raising children with mental health challenges. Similar to other disorders and diseases, early ideas about the causes of mental illness were crude at best. Textbooks published as recently as 1970 claimed mothers as the root of most mental illnesses. As more was understood about the origin of mental, emotional, and behavioral disorders in children, the residue of those early ideas have continued to taint many child serving systems.

Fast forward to the 2003 release of the final report from the President’s New Freedom Commission on Mental Health calling for mental health care in America to transform, including becoming consumer and family driven. The federal Health and Human Services (HHS), Substance Abuse and Mental Health Services Administration (SAMHSA) subcontracted the National Federation of Families for Children’s Mental Health to work with them in developing a working definition of “family-driven care”. Since that time, SAMHSA has advanced the call for family driven care by requiring it in funded systems of care under their Children’s Mental Health Initiative. And, the National Federation has promoted family driven care through its efforts to help communities improve their child serving systems.

The definition: family driven means families have a primary decision-making role in the care of their own children as well as the policies and procedures governing care for all children in their community, state, tribe, territory and nation. This includes: choosing supports, services, and providers; setting goals; designing and implementing programs; monitoring outcomes; and determining the effectiveness of all efforts to promote the mental health and well-being of children and youth.

In spite of all this good work, there has been little success and a lot of frustration. Many communities report the definition is not helpful in their system. Some have tried to adapt it. Some have abandoned it. Too often the definition and its promotion have created additional conflict, lacking clear guidance about how to operationalize the ideas in the definition.

So, where do we go from here? Does the family movement continue to hold this definition as useful? Is the definition of family-driven care any longer relevant? Or, is there an alterative view?

HHS Agency for Healthcare Research and Quality’s (AHRQ) 2012 Annual Conference offered plenty of food for thought along these lines: innovations in patient-centered care and patient engagement, emerging methodologies like public deliberation and patient experience surveys, to name a few. In fact, the conference model itself was an awesome display of strategies for including all voices. AHRQ Director, Carolyn Clancy and her staff repeatedly encouraged all participants – including patients and their families – to email feedback to AHRQ about what issues are most important to them in order to help the Agency prioritize the use of its resources. Significant portions of time were set-aside in every session for participants’ comments, feedback and questions.

To be clear, the AHRQ, its staff, its grantees and those drawn to its (free!) conference created a context of transparency and inclusion never before experienced by this author. Yet, there were two significant missed opportunities. First, was the missed opportunity to bring family-driven care into the discussion when SAMHSA’s Administrator Pamela Hyde failed to even mention the term during her portion of the plenary panel subtitled “Making Health Care More Patient-Centered, Reliable, and Safe”. The second was created by the apparent absence of any national family advocacy organization. So, family-driven care remained an unspoken term in these vibrant discussions with the people who are conceiving, researching, funding, and driving health care reform.

To be fair, perhaps the national family advocacy organizations felt the AHRQ Conference was not for them: that perhaps patient-centered care, patient-centered outcomes research, or patient engagement technologies are not relevant to families raising children with emotional, mental or behavioral health challenges. If so, they should reconsider. Implicit in these concepts of patient-centered and patient engagement is the infusion of patients’ perspectives into health services research and innovation. Nothing could be better aligned with the concept of family-driven care.

Consider, for example, the AHRQ’s Consumer Assessment of Healthcare Providers and Systems (CAHPS) standardized surveys of patient experience being used by the likes of the Centers for Medicaid and Medicare Services (CMS) to drive pay for performance. The survey results are also reported in publically available venues for the public’s use in selecting health service providers. Critical is that the #1 principle driving the CAHPS is an emphasis on patients. ARHQ’s Chris Crofton described this emphasis as including “items patients have identified as important” and about “information only the patient knows.” From the early conceptualization of these surveys all the way through to impact on services, patient perspective is evident.

There were several opportunities to hear about the patient-engagement work done by Kristin Carman, PhD and Maureen Maurer, MPH from the American Institutes for Research. Their recent publication, “Guide to Patient and Family Engagement” (May, 2012) focuses mostly on safety in hospital settings, but certainly provides a frame that could easily translate to family involvement in children’s mental health. During the closing plenary session, Kristin Carman stated, “We need patient engagement [in order] to increase value in health care.” Passionate about inviting and engaging patients in the process of improving health care, she underscored two driving assumptions: (1) patients are part of the problem and therefore part of the solution and (2) patients should bear more responsibility.

Does Dr. Carman’s comment bring us full circle back to parent blame? Not at all.  Patients – people – engage in life styles and behaviors that increase their risk for illness all the time. We smoke. We drink. We drive too fast. We probably eat more sugar than we should. Hence, we are part of the problem. She emphasized that patient engagement includes patient education especially about risk factors and how to avoid them. Would parents raising children object to learning more about risk factors and how to prevent onset or slow progression of mental, emotional, or behavioral health issues? Could we honestly say we are not part of the problem if we ourselves fail to take action to advance our own health and wellbeing?  Would we resent education about early warning signs?

Two quotes are ringing in my ears. AHRQ’s former director John M. Eisenberg, M.D., who passed away in March 2002, was quoted several times during this conference as having said, “Improving healthcare is a team sport.” The other from Massachusetts Health Quality Partners’ Melinda Karp: “We need to get people to step out of their own perspectives and consider others. It is the only way to get lasting change.”

Technologies and innovations that will promote family participation in decision making at both individual and system levels are emerging, just not in the children’s mental health field. It’s time for the family movement to step across the aisle, so to speak, and figure out how to join the larger team.

That’s my perspective. What’s yours?

Alice “Elaine” Slaton, MSA
Elaine previously served as Senior Program Director at the National Federation of Families for Children’s Mental Health. She is a member of the Children’s Mental Health Network’s Advisory Council and owner of Slaton Associates LLC, a team based multi-disciplinary consulting company. She can be reached at ElaineSlaton@comcast.net.

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