In the final panel of the workshop, representatives of a diverse set of stakeholders considered the broader issues associated with making progress on children’s behavioral health in the context of ongoing health care reform. In doing so, they revisited many of the messages of the workshop listed by Mary Ann McCabe in her review of the workshop discussions (see Chapter 1). They discussed life course trajectories and ways of changing those trajectories, the importance of family interventions, research needs, and the framing of messages, among other workshop issues.
In addition to the reflections of panelists and other workshop participants, this final chapter of the workshop summary includes observations made by participants that attended three breakout groups on the second day of the workshop. The groups discussed moving evidence-based parenting programs into primary settings, coordinating a research and services agenda, and possible future directions for the Forum on Promoting Children’s Cognitive, Affective, and Behavioral Health.
David Shern represented the National Association of State Mental Health Program Directors, which has been trying to bring a strong prevention focus to the evolving role of state mental health authorities. He also was former president of Mental Health America, known formerly as the National Mental Health Association, which was founded more than a century ago as the Committee on Mental Hygiene to try to emulate the public hygiene movement that at the time was revolutionizing health.
As Shern pointed out, “If you look at the indicators of the health of the human capital in this country, we have some profound areas of concern.” The United States incarcerates more people, spends more money on health care, has the highest rates of mental illness, and has among the lowest academic achievement levels of nations that belong to the Organisation for Economic Co-operation and Development (OECD). “We should be very, very concerned about those issues,” he said. But emerging science shows that the antecedents for many of these problems involve healthy child behavioral-health development, he continued. Genetic vulnerability interacting with exposure to toxic stress and trauma causes changes to our neurological, immunological, and endocrine systems that becomes biologically embedded and establishes a life course trajectory that evidences itself in behavioral health issues or challenges, which then can produce academic challenges, decreased socioeconomic status, and a cycle of poverty, noted Shern.
Existing data strongly support interventions that can make a difference, said Shern. “What we’ve been trying to do is to tell that story more effectively, to advertise that what we know can make a difference in altering those trajectories.” But much more work needs to be done in conveying this message to the public, Shern added. “Part of our work . . . is to try to tell that story more effectively and move the political will that is going to be necessary to implement what we see as the next major era in public health.”
One part of the story concerns the overall societal benefits of interventions, Shern observed. The Washington State Institute on Public Policy, which was created by the Washington State legislature to advise legislators on their portfolio of state investments, is one example of an organization that has been doing rigorous peer-reviewed work to monetize the costs and benefits of a wide range of prevention and treatment interventions. The Pew Charitable Trusts and MacArthur Foundation are trying to replicate this capacity in other states. “Advocates have a role in continuing to publicize the fact that we have strong evidence from randomized clinical trials about the cost-effectiveness of these interventions from a societal perspective,” said Shern. “This is not only the right thing to do. It is, in fact, the smart thing to do.”
Shern noted that Mental Health America, after working hard on including mental health benefits in the ACA, will continue to advocate at the federal level for every opportunity that it can identify to expand prevention programming. In addition, its state chapters cover about 90 percent of the U.S. population, and they will continue to work on the implementation of mental health parity legislation. Access to equitable care for mental health and addiction treatment is still not guaranteed in many places, and Medicaid expansion under the ACA remains critically important, he noted. “Universal coverage starts to change everything in terms of the overall in-
centives to keep populations healthy.” Health insurance mechanisms can be used differently in such a context, he added—for example, for universal primary prevention intervention. “That gets beyond the medical necessity criteria for insurance payments, which has made reimbursement for prevention programs impossible.”
Wilson Compton, deputy director of the National Institute on Drug Abuse (NIDA) at the NIH, pointed to the dramatic changes that are under way because of health care reforms—and not just the ACA but also the Mental Health Parity Law of 1996, the restructuring of Medicare payments, state and local initiatives, and other actions. He identified two broad concepts in his remarks. The first is the simultaneous emphasis on primary care in the integration of mental health services and on payment reforms. “After all, that is going to be a major driver—making sure the clinicians actually get paid a living wage for providing some of these services that are part of behavioral health.” The second is systems-level change. The shift to population-based payment for services is a very different paradigm than has existed in the past, he observed. For example, it creates the option of promoting good behaviors through community care organizations rather than responding to the consequences of bad behaviors. Insurers and others could come to see this in their long-term business interests, either because it improves health care in an efficient manner or provides cost offsets.
Compton said that NIH needs to provide a consistent focus on systems-level research, which in the case of NIDA means integrating drug abuse prevention and intervention services within health care reforms. He also emphasized the need to retool some of the community-based or school-based interventions geared toward families so they can be implemented in medical settings. At the same time, services and implementation research needs to be included in those efforts, he said, so that this whole-family approach can be refined.
Compton also said that he was intrigued by the theme of changing social norms through a variety of approaches, whether behavioral economics or marketing campaigns. “An awful lot of what is provided is based on the public demanding it,” he said. “Finding ways to create the demand from the other side is something that we would love to learn how to measure better and how to use research to learn how to drive that.”
Delving into the roles of families, Julianne Beckett, who is co-chair of the Family Partnership Network with the American Academy of Pedi-
atrics and recently retired from the University of Iowa, briefly described the Family-to-Family Health Information Centers that now exist in every state and the District of Columbia. These information centers are managed by families and work closely with professionals around the needs of all families, including those with children who have special health care needs.1
Beckett also has been active in health care reform. For example, she described the 14 regional clinics that were created in Iowa and are administered out of the University of Iowa. The health home program through Medicaid is currently running through those regional clinics. In the clinics, nurse practitioners trained in behavioral health can combine behavioral health and medical care within communities. Also, the boards that guide the clinics are made up of community members.
In the new health home project, the first person with whom a parent talks when calling the clinic is a parent of a child with special health care needs, and usually with emotional and behavioral issues as well. “It is very nice for a family to feel like they’re talking to another family to begin with,” said Beckett. The state also uses telehealth, said Beckett, because there are a limited number of psychiatrists in the state, and many of them are retired. From the university, a psychiatrist can interact with a child, a family, and a nurse practitioner to come up with a plan for the family to respond to the issues at hand.
Jorielle Brown, director of the Division of Systems Development in the Center for Substance Abuse Prevention at SAMHSA, said that promoting behavioral health has brought people together who were not talking before. Prevention is at the cross-section of primary care, mental health, and substance abuse, she said, and “We need to take the opportunity to capitalize on the focus on prevention.”
SAMHSA has two key areas in which it can move forward, Brown said. One is to partner with entities that can help translate research into practice. It has worked in the past with researchers who have been implementing prevention in the field so the work can be evaluated, assessed, and, if appropriate, taken to scale. For example, the work of the Center for Prevention Implementation Methodology at the Northwestern University Feinberg School of Medicine, which focuses on drug abuse and sexual behavior, could be replicated in other topic areas or extended to younger
children. Another example, she said, is the work of the Strategic Prevention Framework, which has been looking at how states can reduce harmful behaviors such as underage drinking and prescription drug abuse. “We have to be able to look at how the research is able to make an impact and how the services that are being done will make an impact.”
Brown also emphasized the importance of innovation around primary prevention in the health care setting. As an example, she cited the national campaign “Talk, They Hear You,” which is targeted at the parents and caregivers of youth ages 9 to 15 to help them have a conversation about underage drinking. “Many parents are fearful—they don’t understand, or don’t think to, or don’t know what to say to their [children] about underage drinking,” she said. Partnerships with primary care provider organizations led to public service announcements in more than 30,000 doctors’ offices. “Having these types of resources available is key.”
Terry Stancin, professor of pediatrics, psychiatry, and psychological sciences at Case Western Reserve, director of the Child and Adolescent Psychiatry and Psychology Department, vice chair for research in psychiatry at MetroHealth Medical Center, and president of the Society for Developmental and Behavioral Pediatrics, which is an interdisciplinary organization that has worked on and supported team-based, interprofessional services for children, focused first on issues of payment reform. Health care providers need to get paid for the services that everyone wants done, she observed, including behavioral health interventions. At the same time, introducing behavioral health professionals into a primary care setting can change the skill level and the attitudes of the providers who are there.
Stancin also directed her remarks to workforce development. More people need to be recruited into developmental and behavioral pediatrics, child psychology, and other fields and trained appropriately to do the work that is needed, she said. Training new doctors is expensive, and the ability to do that in many medical settings has become increasingly difficult. Less time and financial support are available for training, and grants to support training are more difficult to get. In addition, a more diverse workforce is needed to serve a diversifying population, Stancin noted.
In the discussions that followed the final panel—and in all three of the breakout groups held during the workshop—a major topic was how best to develop and disseminate messages that can influence public perceptions, strengthen political will, and encourage action.
William Beardslee, chairman emeritus at the Department of Psychiatry at Boston Children’s Hospital and Gardner/Monks Professor of Child Psychiatry at Harvard Medical School, called attention to the need to rethink how to frame the issue. “We need to be clear about what we have to say,” he said. “We need to be succinct.” For example, the work of the FrameWorks Institute has been helpful in framing messages about the importance of early childhood development.
Hendricks Brown, professor in the Departments of Psychiatry, Behavioral Sciences, and Preventive Medicine at Northwestern University, pointed to a group that was missing from the workshop and from many other policy discussions: parents. Their voices need to be heard, he said.
Felisia Bowen, assistant professor and director of the Center for Urban Youth at Rutgers College of Nursing, emphasized the need to not “keep preaching to the choir.” The information being discussed at the conference needs to reach the people who can use it, she said. For example, can information about parenting be placed into magazines like Cosmopolitan or Sports Illustrated or into television shows like Oprah or Dr. Phil? “There are different ways to frame our messages to get other people to read them and to understand them,” she said.
David Hawkins, the Social Work Endowed Professor of Prevention at the University of Washington School of Social Work, forwarded the idea of tracking what people look up on the Internet, which provides an indication of people’s interests and concerns. Creating a norm that people want to know about parenting and can receive such information from their health care provider could drive beneficial actions, he said.
Hawkins and several other workshop participants also emphasized the strength of the message that the community of researchers and practitioners can convey. Solid evidence now exists to show that interventions can have not only health effects but economic and social effects. As Shern observed, “These are like behavioral health vaccines. . . . It should be our expectation that every child has an opportunity to participate in one of these evidence-based programs, and they will have lifelong effects.” This could help change societal norms to create a demand for preventive services.
The conversation in one of the breakout groups touched on delivering messages to people wherever they are—for example, minority communities, faith-based communities, and online. This breakout group also noted that large corporations are already providing these kinds of messages. For example, Procter & Gamble provides Pampers to people, but the company also conveys messages about children’s health. Television commercials and public service announcements could instruct parents to ask their doctors about parenting. These and other such steps could increase the demand and uptake for parenting information, which in turn could change the practices of health care providers. In this way, the narrative could change
from illness to prevention to health promotion to positive development for young people.
One way to signal the importance of the issues would be to create a federal Office of Children’s Health, a workshop participant suggested. Another workshop participant, Ron Manderscheid, Executive Director of the National Association of County Behavioral Health & Developmental Disability Directors, suggested to incorporate the vision of prevention and behavioral health into the framework for Healthy People 2030, which is now in the planning stages.
Another prominent issue in the discussion was the variety of settings in which behavioral health care can be delivered. Primary care can encompass many different settings, several panelists observed. For example, public health and maternal health are part of the primary care system, but they are not necessarily integrated into that system. Furthermore, many children do not have primary care, or they show up at a primary care clinic only when they have a problem. For example, many adolescents are in primary care because they want birth control.
An issue raised by Hawkins was the extent to which services are provided in community settings, such as around drop-off or pickup times from preschools or schools. Another option that could be more thoroughly explored is “one-stop shopping” primary care clinics. “You can make compelling arguments on both sides,” said Hawkins. Research is needed to determine which approaches work best in different contexts, he added.
Integrated services can change the settings in which services are delivered. An example cited by Stancin would be if employers were to take some of their employment policies around health behaviors and extend these policies to parenting practices. José Szapocznik, professor in the Department of Public Health Services at the University of Miami, also warned against the dangers of dilution: “Often we think that if we have enough antibiotics for 10 people and we spread them across 100 people, everyone will get a little bit of benefit, and in fact they don’t. This is a misconception in our field. Sometimes it’s preferable to address a smaller number of people and do a great job with them, and to do the program the way it was tested.”
McCabe pointed to the parallels between different types of integration. The processes of integrating behavioral health into health care, health care into communities, and social services into the social and behavioral determinants of health have many similarities, she said. Similarly, integrating service and research agendas, different professional groups, and other stakeholder groups makes it possible for all to work together.
Several research needs were mentioned in the final discussion and at other times during the workshop. Beardslee cited the need to know which people are not currently being reached. For example, which mothers and children are not being reached by a program on maternal and child health or infant mortality? This question relates directly to larger questions of population health, implementation, and dissemination, he noted, and will be an important future topic for the forum.
Research on the benefits and costs of interventions could be extremely valuable, several participants observed. For example, if the USPSTF were to determine that prevention programs have a sufficient base of evidence, they would become part of health care at no cost, said McCabe. Also, if the Congressional Budget Office were to score savings and not just costs for preventive actions, prevention could occur on a much larger scale. “That is an obvious opportunity. There is a lot of work being done to try to partner with researchers and policy makers to try to make that strategic.” Similarly, getting this work into comparative effectiveness research at the Patient-Centered Outcomes Research Institute and elsewhere could help build the research base for prevention.
Valuable models exist that combine service and research, including programs under the Maternal, Infant, and Early Childhood Home Visiting program; the Administration for Children and Families; NIDA; and SAMHSA. Research and evaluation overlap but also differ, Brown pointed out, and both are needed. Sometimes policy makers provide funding for a program and want the program to start quickly, which can make it difficult to plan a research or evaluation component. But such a component can be developed within 1 year or 2, particularly if rollout or hybrid designs are adopted for the research or evaluation. The IOM could play a valuable role in convening groups that could plan these steps in advance of a program’s implementation, thus allowing new evidence to be generated by program and policy innovations.
A participant suggested looking not only at the prevalence of behavioral health problems but at the prevalence of families that are sufficiently nurturing. Such measures, which would take research to develop, would focus attention on improving that number, whether at the local, state, or national levels.
Brown noted that the field does not now use knowledge from behavioral economics much. “This is a big untapped area that would be able to help us.” In addition, technology may offer ways to reach people in some communities who are not being reached in other ways. It is “a system-level issue,” he said, and each piece needs to be considered as a complementary part of the overall system.
Cost-effectiveness data are still lacking for some of the new and innovative models being implemented, such as health homes under Medicaid, several participants observed. Another set of issues raised by multiple participants involves partnerships: What contributes to good partnerships? How do they emerge? How do partnerships with families emerge? How do parent-to-parent programs work? How can partnerships between behavioral health providers and primary care or family medicine providers be forged? How can larger community coalitions be created?
Workshop participants discussed the lack of minority researchers in the field. Compton, for example, said that this lack has been a major theme across NIH, and that NIDA has been particularly attentive to the issue, with a recent council review and a series of recommendations on the diversity of the scientific workforce. Attrition of minority researchers is particularly noticeable from graduate school to the postdoctoral level and from the postdoctoral level to the faculty level, he said, so NIDA is focusing its attention at these transitions, helping with such things as grant writing and career development. McCabe pointed out that professional associations also are working hard on this issue with federal agencies.
An intriguing conversation centered on the dangers of ascribing blame to parents for behavioral problems that arise in a much broader context. As Shern pointed out, focusing on the vulnerability of children to toxic experiences has the potential to reintroduce the discredited idea that parents are solely responsible for the behavioral health problems of their children. A number of people have been studying the supports and environments that parents need for their children to reach their full potential. “We are going to have to frame this well,” he said. “It is important to think about the larger social context and about a strengths-based approach to supporting people so they can maximally benefit, rather than trying to find someone to blame.”
Finally, McCabe addressed the urgency of the situation. Policy opportunities happen all the time, she observed, which requires moving quickly to take advantage of circumstances. At the same time, transformational change is needed along with incremental change, she added. Framing is important to both kinds of progress, because the convictions of the public will produce both incremental and transformational change.
A major issue for the forum is “how to make some things happen in a timely way,” McCabe noted. “Where do we best put our energy and resources? How do we establish work to encourage the most effective partnerships between research and service and bring about change as rapidly as we can?”