DR. PAUL DWORKIN: We encourage you to think broadly, creatively about next steps. We do not mean next steps specifically with respect to Help Me Grow, but rather next steps with respect to strengthening developmental services, strengthening developmental outcomes within the context of child health services and potentially beyond.
DR. NEAL HALFON: You have to decide on the goal that you are trying to achieve. Is the goal of the entire service system to solely identify children with disabilities? Is it also to identify those who are at risk for developmental disabilities? Or is it really to optimize and promote the development of a whole population (which would include identifying those with disabilities and at risk for disabilities)?
Our developmental services system, up to this point, has focused primarily on disability identification. It is based on a deficit-based and an (older) maturational model of child development. Both the fields of Pediatrics and Education are actually undergoing a paradigm shift, moving from the maturational model of development, with its focus on milestones and identifying deficits and disabilities, to a transactional model of development that will focus on continuous surveillance and optimizing developmental outcomes. Accompanying this conceptual shift is a shift in focus of the service delivery approach, moving from services for specific disabilities to systems of developmental optimization (Figure 1).
A transactional model of development dictates what the system should look like. A transactional system is about relationships among cognitive, emotional, and social development and the biological, behavioral, and social environments that influence and actually interact with these developmental functions. Capturing the impact of interactions across these domains requires a set of strategies to horizontally integrate assessments and service provision. A transactional model of continuous development also represents the development as trajectories, which are particularly influenced by critical and sensitive periods, as well as other cumulative influences that can "add up" over time. This means that assessment screenings need to be longitudinal (Figure 2).
As we look at the pediatric office, there are four major service delivery functions: acute care, chronic care, preventive care, and developmental (care) services. These different service functions can be connected to other services, outside of the pediatric office, in various ways. Most pediatric offices deliver a menu of developmental services and usually connect to some kind of disability center, such as regional centers for developmental disabilities that administer Part C (of IDEA) programs. A more expanded set of connections and potentially more functional service delivery pathways would connect the pediatric office with the childcare centers and family resource centers, so they could be partners in doing continuous surveillance as part of a system of developmental optimization.
If the system in Figure 2 is working well, it will also be able to address the need to do mid-level assessments of those children that really need a more comprehensive diagnostic assessment. How do we then do mid-level assessments, because you cannot send 20 percent of your children to a regional center for developmental disabilities? Because many pediatricians neither have the time or the training to do these developmental assessments, our regional centers are being completely overwhelmed with children that should not be there, but have nowhere else to go.
How do we connect a pathway between the childcare sector, the pediatric sector, and the developmental disability center? Here is where Help Me Grow comes in as the coordination unit that begins to link all of these sectors together and, in a sense, helps to manage this cross sector pathway. If we are going to build more effective systems, we need to look beyond best service practices, as well as look to "best pathways" and "best processes." A more functional developmental services pathway would have a surveillance process in place in the community, a screening process within the pediatric sector, an assessment process done either within the pediatric office, academic neurodevelopmental center, or elsewhere, and in-depth evaluation done at regional centers for developmental disabilities.
At any point in time, children need a constellation of services to move along a higher trajectory: the pediatric office; the medical home; home visiting; the family resource center. A set of services constitutes a network that becomes linked at the community level. Help Me Grow can play an essential role in connecting these services together to create a functional system, by making sure that all these services are systematically organized. We are building a developmental support system around that child, so that you can optimize developmental trajectories and achieve higher levels of function, providing more protective factors and minimizing risk factors in trajectory-optimizing, service delivery pathways.
Currently, many communities have pediatric offices, clinics, and school health centers all reaching out like little neurons trying to make connections to various kinds of services. They are trying to connect to WIC and to childcare, to breast-feeding services, and to special medical services and mental health. Everybody is trying to do this while reinventing their own pathways.
Many communities are going as far as saying let's create a resource, we could call it a primary care resource center or a medical home resource center, to bring all this into one place. As you then connect those, you do not need the whole array. It is like neurons forming really good connections, rather than many of them.
DR. JANICE GRUENDEL: Public school, even for young children and for children with disabilities, is the major institutional system with which we must contend. Also, we have technology capacity that is so untapped in some sectors. We must figure out how to deal with confidentiality, unique identifiers, and the technologic sharing of information. We must talk about the infrastructure potential that is respectful of human privacy issues and, at the same time, allows us to do our business differently.
DR. NEAL HALFON: We are working with a big medical technology company that is developing a virtual private network to try to connect all the pediatric offices and clinics, the schools, the family resource centers, and the childcare centers together. They have developed, but not yet marketed a "smart card" that parents could carry around to transfer information.
We must be relationship-based, because development is relationally based. We must also use "neuro-networks" and be technology-wise to achieve efficiencies.
DR. JUDITH MEYERS: We discussed the importance of being relationship-based and the need, on average, for seven contacts to link children to services. We need to make the best use of technology because some families do not need seven calls. We need the best of technology and the best of person-to-person systems. Even Infoline has taken only baby steps in using its technological potential.
DR. LISA HONIGFELD: When we first began Help Me Grow, 10 to 12 calls were sometimes needed to connect families to services. As the child development liaisons have joined us, the amount of time now required has greatly decreased because of the relationships they have established.
MS. JOANNA BOGIN: Sometimes it is a tried and true path, while at other times it feels like starting over. We have definitely learned to go to the care coordinator or agencies, so there are many paths that have been well worn.
MS. LAURA BAIRD: We have been able to cut through some of the layers. When we first were calling, we weren't getting a person at the other end of the phone and we didn't know whether to push one, two, three, or four. Now, we know we push four. Over time, we have learned to cut through some of the layers that parents would have to get through, and then we give out that information, we pass that on to parents.
DR. WILLIAM HOLLINSHEAD: If we started over, knowing what we know now, and if this country could figure out what an entitlement for preschool children ought to contain, would that change our way of thinking? We actually have a couple of neighborhood schools in Rhode Island that would like to build primary care medical homes into the school campus and start with infants. That might be a real developmental home.
DR. NEAL HALFON: The Hope Street Family Center in Los Angeles has actually telescoped all this into one place: an early childhood center for zero to five; preschool; Early Head Start; health care services; and it performs child find. It is one stop, as if it was built knowing what we know now.
DR. RICHARD ANTONELLI: As a medical home provider, I am concerned about too many silos. Medical home needs to encompass everything. What happens if a child has more than developmental needs? Who ties that together? Right now, in terms of MCHB, AAP, and AAFP policy, it is the medical home. As we think about the evolution of this model, I wish to make the plea that we not create a different silo for every possible need-developmental, behavioral, mental health, psychosocial. The more consolidated the better to empower the family and to re-access primary care for chronic condition management and care coordination. Don't give us more silos. Try to give us as few silos as possible. Single point of entry is very attractive. Also, we must make sure that we include families not just as consumers, but truly on the front end as advisors. We should be making sure that they are sitting on boards of programs that we start to develop. Families need to be partners on the front end, in addition to giving us feedback on the utilization side.
DR. EDWARD SCHOR: If you buy a world map in the United States, North America is right in the middle of that map. But if you buy a map in China, China is in the middle. The medical home concept is a great idea, but why should that be the center of the universe? The medical home concept suggests that the health care office should be the home and everybody else is a silo. We have talked about the importance of relationships to serve children and families, and I really support that concept and the need for inter-related, independent systems. But learning to share is a fundamental skill, perhaps learned before or in kindergarten. Many of our systems haven't learned how to do that yet.
We have very different cultures and we must learn to speak the same or at least one another's language. We deal with it in our program at The Commonwealth Fund in which we are trying to promote social and emotional development. For example, in the ABCD program, we did not call our goal to improve social and emotional development, because Medicaid doesn't pay for social development. We instead talk about promoting healthy mental development, because Medicaid pays for mental health.
The different languages that we use are really a barrier. One of the distinctions I like to make between some of the systems is that the healthcare system actually is used to "consulting" and the human services systems are used to "referring." The doctors expect somebody to call them back and tell them what happened. The human services staff pass the client along to the next person and that's the end of their responsibility.
That's of course, a generalization but, by and large, I think it's true. Not that either group is wrong. We just have very different ways of operating. The kind of systems building that we need will require moving off of our own egocentric view of the world. A breakfast every other month is good to facilitate a referral, but it's not going to create a lot of sharing-but it's a start.
Amy asked the question, "You make the referrals to these various agencies out there, but do those various agencies talk to one another? The answer is probably not, because they only see each other once every other month if they happen to make that meeting. We need to find ways of living together, if we are going to have more integrated systems.
MS. AMY FINE: However we frame this in the future, we must talk about serving families as our starting point. The families feel that Help Me Grow is serving them, which is kind of unique in the service world and certainly in the medical world. That is a goal we should all have. It is something you've accomplished, which is extraordinary.
Since the families see themselves as being served by Help Me Grow, there aren't the confidentiality issues that you might get if it is service provider to service provider without consulting the family in between. It sounds like you make a very big effort to immediately contact the family and you then get their permission to contact others. So your talking to other service providers means that you are working on behalf of the families. We should think about that as we draw our diagrams about how systems work. Whether we are a medical home or any other kind of home, the families ideally are the homes for the kids. They may need a lot of support, but we should be there to support them.
These projects are relationship intensive. Is that the limiting factor? To me, relationships are the enabling factor. You cannot do it without relationships. You cannot really make these systems work unless you have some relationships. The question is which ones you need. You cannot just put up a computer system that has all the resources on it. This is assistance to us, a tool. But it is not going to get us where we need to be.
DR. LISA HONIGFELD: As we talk about a new primary care model for children we must challenge child health providers to be a bit more behaviorist, a bit more developmentalist, and not just identify and refer. We make great inroads in the referral by having a wonderful support system, but that is only as effective as what happens in primary care. Probably the first formal contact is at a two-week health supervision visit. There is no better place to begin developmental promotion than right there with that healthcare provider.
DR. PAUL DWORKIN: As you know from your publishing experiences, the task of indexing requires that we identify key words when we submit an article. To conclude and summarize our discussion, I offer you 10 key words that came up time and time again and should inform our efforts in moving forward: rethinking; partnerships; systems; technology; relationships; outcomes; pathways; consolidation; care coordination; and family-centered. They capture the essence of what was discussed. Our hope is that this discussion will lead to thinking and planning that will enable us to promote the best developmental outcomes within the context of child healthcare and beyond.