8

Breakout Groups and the Reflections of Moderators

In the final session of the workshop, representatives from three breakout groups reported back on the main topics of discussion during the workshop’s breakout session. Finally, the moderators of each panel and breakout group reporters reflected on the major themes that emerged from the workshop. In addition, Box 8-1 at the end of this chapter lists suggestions for future actions made by speakers earlier in the workshop.

MOVING FORWARD WHEN THE EVIDENCE BASE IS LACKING

One breakout group looked at how to think about interventions when the evidence base is incomplete. C. Hendricks Brown of Northwestern University, who reported back for the group, emphasized the importance of integrating services with research, which can help address the lack of an evidence base. For example, the split within the federal government of research and mental health services “has caused serious problems,” he said, “and it’s time to reshape that.” Integrating the two can both improve research and provide the best services possible, Brown said.

Emily Lichvar of the Substance Abuse and Mental Health Services Administration (SAMHSA), who also reported back for the group, pointed out that many evidence-based practices are targeted toward specific groups, thresholds, or diagnoses. If these practices could be extended to other populations or individuals who are in an earlier stage of a disorder, the practices could have more widespread benefits and could be studied in a broader context. In addition, the origins of many mental health problems are in childhood, she pointed out. Screening and early interventions thus may be

able to prevent later problems that emerge in adolescence and young adulthood while also adding to the evidence base.

Group members discussed the fact that parents have opportunities to learn about research projects and get involved in those projects to take advantage of those interventions, even if not all the components of an intervention are offered at all times. However, both research and services require getting and maintaining the attention of policy makers to ensure funding for complex medical and educational needs. These goals hinge in part on public perceptions of these conditions (see Chapter 7).

The group also discussed the advantages and disadvantages of a reliance on specific diagnoses. A diagnosis identifies people with a prognosis, which can cause stigma and discrimination, but it also provides a name for a person’s condition. In addition, some conditions have been “medicalized,” when, often, different kinds of interventions are needed to relieve suffering, members of this breakout group observed.

COMMUNITY ENGAGEMENT AND PARTNERSHIPS

Kelly Kelleher of the Research Institute at Nationwide Children’s Hospital and Angela Lello of Autism Speaks reported back for the group on community engagement and partnerships for development and implementation of solutions. Members of the group observed, first, that there is no single definition of a community. Attempting to define a community by a diagnosis runs up against the fact that needs, preferences, opinions, and languages all vary even within a single diagnosis. Rather, communities take shape naturally and have overlaps and shared areas of concern with other communities, as in a multidimensional Venn diagram.

In that case, to build capacity in communities to reduce risk and enhance access to care, multiple communities need to engage with children and families with disabilities, Kelleher and Lello reported. This requires ongoing education and resources for the members of these diverse communities, and particularly for those communities that do not usually engage with people affected by disabilities. Resources might include, for example, information about the key opinion leaders in different communities, including the disability community, and how to engage with those individuals.

Kelleher and Lello also noted that existing resources and models of community and family engagement can be adapted for work with disabilities. However, responses to disability need to be reactive and flexible to meet the needs of diverse communities.

One issue is what are the big questions that communities are facing, they noted. Where is the overlap among these issues, and are there common solutions that would help address these issues?

OVERCOMING BARRIERS TO COLLABORATION

The third group included participants in both the workshop and in a 2-day meeting preceding the workshop titled “Designing Systems That Work for Children with Complex Health Care Needs” sponsored by the Lucile Packard Foundation for Children’s Health. Edward Schor of the Lucile Packard Foundation, who reported back for the group, pointed out that a theme of both meetings was the need to overcome barriers to good quality care, prominently including barriers to collaboration. “The care of any complex, chronic condition is going to require multidisciplinary approaches, and yet we have substantial barriers, both in practice and policy, that interfere with that kind of collaboration,” said Schor. A particularly difficult collaboration is with the education system, yet this collaboration is essential once children reach school age. Schools “need to come to appreciate how important it is to collaborate with all the rest of the systems that are serving children and families,” Schor noted.

In general, members of the breakout group said the social determinants of health need to be factored directly into health care systems, not addressed as an afterthought, Schor reported. These social factors are often the primary determinants of not only whether people can access care, but also whether they benefit from the care that they can access. Members of the group also asked whether insurance is the right way to address chronic illness and preventive services. Insurance was designed to respond to rare and unanticipated events. But disabilities and complex health and educational needs are not rare and self-limiting; they are chronic and expansive. “Are there different, not just payment strategies, but financing strategies, that we ought to be considering, that will allow us to provide the services that are needed?” Schor asked.

Change often originates at the local level, Schor observed. An innovation happens locally and is identified as a best practice, the change then moves to the state level, and the state serves as a laboratory for federal policy. “It’s unusual for federal policy to lead; it usually follows,” he observed. Intentionally tracking innovations at the local and state level therefore can be a valuable spur to policy change, even as broader efforts to change federal policy continue.

Finally, Schor pointed to the need to “follow the dollars.” In California, for example, developmental services are provided by 21 independent contractors. If two children with identical problems, one black and one white, go into the same center, the white child gets twice as many services as the black child, he said, “and these are by people who want to do the right thing.” The problems caused by funding and health care disparities will need continuing attention, he said.

COORDINATING SYSTEMS OF CARE

In the session where panel moderators joined the breakout group reporters to reflect on the main messages emerging from the workshop, Deborah Klein Walker returned to a theme that arose in several panels: the need for care coordination among systems. The underlying question, she said, is who is responsible for the health of children, including those with complex medical conditions. In many states, systems come together to provide a loosely coordinated system of care for children. However, that system breaks up when children become adolescents and adults. “I don’t have the answer, but if we can’t solve those bigger policy issues of the points of accountability at the federal and state level, . . . we’ve lost it,” she said.

Parents, families, and communities are key to a more cohesive system, she said. The United States has never made a commitment to fully fund health care for everyone who needs it, and today’s emphasis on health equity highlights the needs that are going unmet. “How do we come together to build that kind of system?” she asked. People in the states want to make this happen for children and adolescents, but “it takes leadership at the federal level, and right now that’s a big issue.”

As one way to improve cohesion, Stephen Shore pointed to the parent skills training that Autism Speaks supports in low-resource areas. This initiative takes a lot of time and effort, he said, but research on the efficacy of such programs might point in productive directions. Also, experiences in the autism community could be disseminated to other parts of the disability community. “We’re a community here, all of us in this room. What can we do to reach out to learn what other people are doing?” he stated.

Several of the other moderators commented on the need for a unified front. For example, Mary Ann McCabe pointed to the funding silos within the federal government as an impediment to greater cohesion. “Even the journals and such are siloed in a way where somebody in one area will be very unlikely to learn about integration in another,” she said. Shore observed that advocates cannot be stymied by federal bureaucracies and siloed departments, or “we’ll be back talking about this decade after decade.” Keynote speaker Maureen Durkin said that even at the federal level, there is no incentive to work together for children. Instead, funding streams are more incentivized to work separately and competitively.

Walker observed that disability affects all social groups, “so it shouldn’t be one of those things that we can’t come together on.” But the American public needs to know more about disability, she said. Advocacy groups could send unified messages, with champions leading the way toward change, as champions at the federal, state, and local level have done in the past. “There is strength in coming together and advocating for similar things,” she suggested.

Strengthening the link between disabilities and disparities is another way to foster change, Walker said. “Disability is a health disparity and should be on the health equity agenda in this country,” she said, as reflected by the designation of disabilities as a source of health inequities by the Centers for Medicare & Medicaid Services. People with disabilities have a history of exclusion and discrimination, they have population-level differences in health outcomes, and those differences are preventable and unjust, Walker said.

She added that prevention of disability influences everyone, not just individual groups. The United States spends $3 trillion on a health system that is responsible for only a small fraction of the health of the population. Investing in the social determinants of health could boost education, employment, and health simultaneously. “That’s where true prevention is,” she stated.

One obstacle to prevention, Walker continued, is the Office of Management and Budget’s requirement that federal funding show a return on investment within 3 years. With children, a return on investment may not materialize until 10 years later. As a result, she said, children “do not get the focus or the understanding that they need in a lot of the legislation or in the funding models.” A logic model could identify intermediate outcomes on the way to an ultimate outcome, but, she asked, “is that really realistic?”

On the subject of coordination, Lichvar asked whether public schools are currently equipped “from an infrastructure perspective, or from a staffing perspective, to meet the needs of children with complex medical and health and mental health problems.” Teachers are focused on trying to bring all of the 30 or more students in their classroom up to an adequate level on tests, and adding more responsibilities to their jobs may not be possible. “My brother is a third grade teacher,” she said, “and he has 30 students in his class. Eight of his 30 students have various accommodations, and, to be quite frank, he is not meeting those accommodations, it’s physically not possible. . . . He wants to meet the needs, he’s agreed to meet their needs, they all have Individualized Education Programs, it’s in writing, he has to report on all of this, but it’s quite simply not happening.” One possible approach at the school or county level may be to do something like case management, but schools are not equipped to meet these needs today, she said.

Kelleher observed that the parents and families who are able to advocate for their children with schools and other institutions are the ones with resources. “We don’t see that among people without resources. These kids are disproportionally trucked in to foster care and other situations if they have medical complexity and multiple disabilities, and there’s nobody advocating for them,” Kelleher noted.

OPTIONS FOR PREVENTION AND TREATMENT

Several speakers in the workshop’s final session also raised issues involving prevention and treatment choices. For example, Craig Newschaffer pointed to the tension between targeted and universal programs, adding that the two approaches are not necessarily antagonistic. Programs aimed at a group at the extreme of a distribution can serve a much larger population if they are designed to do so, which would also break down barriers among groups.

In addition, he mentioned the importance of developing alternative outcomes as one way to close the gap between research and practice. For example, measures of implementation fidelity, changes in the classroom, or enhanced parental decision making could be used to shape policy.

Forum member David Hawkins of the University of Washington pointed to the role of primary care and schools in delivering preventive interventions to parents and children. “It’s important to think about both improving parenting skills in the whole population as well as ensuring that those parents who are dealing with even more difficult problems have the tools and skills they need,” he said. The challenge, said Hawkins, is to be able to provide a service without a diagnosis and to someone who is not the patient. “We need to get that to be something that is acceptable and legitimate to do—and legal to do.” McCabe similarly pointed out that many of the incentives in place today are based on an adult model and do not adequately recognize the importance of childhood and life course health development.

As Shore observed, “primary care pediatrics is as close as we can come . . . to a universal infrastructure that can reach all families. It’s far more pervasive than organized child care.” The problem is that most pediatricians are not well prepared to offer preventive services.

Shore suggested another approach. “Obstetricians routinely ask women pregnant with their first baby, ‘Where are you going for your prenatal classes?’ That’s not thought of as a pejorative or stigmatizing question. That’s just part of the system. I think pediatricians ought to be asking first parents, ‘Where you are going for your parenting education?’” Today, many parents do not have access to parenting education programs, Shore acknowledged. “But if we had universal parenting education as an accepted thing that you do when you’re a first parent, we could make some real progress on preventing some of the things we’ve been discussing today.”

Newschaffer also identified the prenatal period as a period of risk for many of the conditions discussed at the workshop, including, possibly, schizophrenia and autism. “There’s a lot going on there that we don’t fully understand if we’re thinking about prevention.”

At the same time, McCabe added, interventions cannot take the route

of blaming parents, despite the good evidence for parenting programs as interventions for disruptive behavior disorders. Blaming is why parents do not get these services. “We can’t do a mass campaign to tell parents that they’re the answer because they’re the problem. It’s not going to fly. We have a lot of work to do to figure out how to communicate all we know and the urgency of it, and help families see it as a supportive move and not that they are the cause.”

A WHITE HOUSE CONFERENCE AND FEDERAL CHILDREN’S OFFICE

Finally, the moderators noted that, at several points during the workshop, several speakers and participants called for a new White House conference on children, the last of which was held in 1971, and for the establishment of a federal children’s office in the near-term future. Such steps would make it possible to reach out to other people and “go beyond talking to ourselves,” said McCabe.