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Discussion-Section I

Journal of Developmental & Behavioral Pediatrics: February 2006 - Volume 27 - Issue 1 - p S17-S21
SECTION I. THE HELP ME GROW EXPERIENCE
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DR. NEAL HALFON: One of the things that I found most interesting was what Help Me Grow is allowing the State of Connecticut to do if you have a sort of a pyramid of need for children. Traditionally, what states have done and what the system has done is focus on the top of that pyramid, the kids that are the most disabled in some sense. What Help Me Grow is allowing Connecticut to do is to move further down into a larger group of kids with less overt needs but, from a population- attributable risk standpoint, represent a lot more of where the long-term problems are going to be, rather than this two percent or six percent of children that have severe disabilities.

The issue that I think is important for you to be thinking about from a system standpoint is that it seems part of what Help Me Grow is premised on is that this coordination center can be connected to pediatricians or health providers, to parents, and to other resources. In order for information to flow between these different parts, there needs to be a level of alignment between the parents and the Help Me Grow process, between the physicians and the Help Me Grow process, and the providers and the Help Me Grow process. What are you doing to continue to push the kind of alignment that you have? Obviously, you're going to have pediatricians who are early adopters of this and are going to be frequent users. That's what you showed in your data, that there are those who already knew about it and those who are using it. But how do you align the rest of the pediatric community with this? How do you align the parents and parent groups up with this? And how do you align the provider community on an ongoing basis?

A network or system only works based on how much alignment you have between the parts of the system and how much flow you have. And you have parts linked. How do you continue to further the alignment and improve the flow through it, so that the quality of what you are doing actually goes up over time?

MS. JOANNA BOGIN: Yes. That's a very good question. We constantly look at linkages from all the different points that you mentioned, so the child development community liaisons not only do the networking breakfasts, but they are constantly involved in what's going on in the community. As a result, people see them as the experts and come up to them and then they continually "connect those dots." That happens on a daily, weekly basis.

Another community activity involves family fairs. We attend community-based and state meetings. We are on the steering committee for the Early Childhood Comprehensive Systems Grant.

To the pediatricians, the child's health providers, we say that we are here to help you. There are certainly some child health providers who have been in the community for 20, 25 years, and if they are able to connect the families to services because they have a relationship with, for example, the Child Guidance Center, we say that is terrific. But if, in fact, you call that child counseling center and there's a waiting list, give us a call and we'll see what we can do to help you. So we don't do what I would consider necessarily a hard sell. We just say, we're here to help you if at all possible. I think doing that keeps building the system. The last point is if we do a good job, then other people in the community will talk about it. If a parent feels happy, they're going to talk to their neighbor. If the child's health provider feels that we have responded to them, then they are going to tell other child health providers in the community and we have seen that also spread the word.

DR. NEAL HALFON: You've outlined a face- to-face, relationship-based alignment strategy between key providers in the system and, in a sense, an outreach, event-oriented alignment strategy, with your fairs and such. You might want to also think about sector-specific strategies that you can develop that bring together the sector in a way so that they take some ownership of this involvement. So for the pediatricians, you give other kinds of incentives or tools that pull them into this in a way that encourages the later adopters to do this. Or, use your early adopters to get to the others and bring them in, but with its own communication strategy, because the pediatricians are going to talk to each other in a different way than Help Me Grow.

Besides the sector strategy, are there other technology enhancements that you can do to also bring them together, so that you're not using just person-based, but technology-based ways of doing it? Can you be using either specific linkages, virtual private networks, other kinds of technology that allow this to be more aligned, so the flow is increased as well?

And then, lastly, how do you market this next phase? You roll out a product initially, Help Me Grow, you introduce everybody to it. Some people start using it. But then there's a next phase of marketing and communication that has to do with continuing to have people know about it, but also trumpeting your successes, showing that it's actually working, a sort of second-phase marketing. You've got some brand recognition now, but how do you push the brand? Which is a different way of communicating than with your roll out, with perhaps specific sector-related messages that are tied into what you think are the barriers in particular sectors to bringing people along.

MS. JUDY SHAW: Building on the marketing is the improvement. As you're doing this work with the child development liaisons, how can they contribute to improving the system? I had a point of clarification. When the call comes into Infoline, are the care coordinators responsible for finding a resource for the family, or do they hook them up to the child development liaison? Is the role of the liaison just to populate the database, or do they take over or have a personal relationship with the family and really take over that care?

MS. MARIJANE CAREY: The person who is on the phone, who is known as the care coordinator (CC), is the only person that has the relationship with the family. When they are looking for resources, the child development liaison (CDL) goes out in the community and looks for the resources that can best meet those needs and then gives that information to the care coordinator. Remember, as Joanna said, we don't see what's going on behind the scenes. You don't really want to bounce that family around to too many folks.

MS. JUDY SHAW: So the care coordinator is based at the infoline center and they are using the liaisons to give them information.

MS. MARIJANE CAREY: For their support, that is correct.

MS. JUDY SHAW: Our experience in Vermont, when we have held community meetings and talked to people in groups, is that we have heard over and over again that people don't refer to places, they refer to people. So I'm sure your community meetings and networking breakfasts are so important, but it's very hard to refer to a number or a place without knowing who you are referring to. And we've heard over and over again from the providers that if they need mental health resources, they're reluctant to just refer to a location or a number. And what we've been able to do by holding these networking meetings or community meetings is have the people meet each other. And we've heard back how important that has been. So my concern is that it sounds very much removed from that personal person - that personal contact and that networking, but it sounds like you're starting to build on that. And I think that's such an important component.

MS. MARIJANE CAREY: I think you're right and the challenge is that the care coordinators have to be on the phones; it's the dilemma - we try to have care coordinators go to the networking breakfasts so that there is a face. We also do in-services where agencies come to Child Development Infoline and networking goes on. At least the child development liaisons are out there and can begin to put not necessarily a face on the people who are on the phone, but a face on Help Me Grow. To pick up on Neal's points too, if we can start reciprocal relationships, they are the next level for promoting this. We're kind of at the 80/20; the 80 percent was the easy part, and now we're getting to the 20 percent. But that should expand the circle out, and you know that you have arrived when other people start telling you about the program; things that you believe and they're saying for you. I think we're getting there.

The reciprocal relationships and finding champions, either within the medical community or in geographic areas with other folks willing to really promote the program on your behalf, is very encouraging. I don't remember the exact percent, but a high number of people are calling Child Development Infoline on their own because they already know about it. That indicates that we're making some inroads with that 80 percent, but I think that the 20 percent is certainly going to be our next challenge for sure.

MS. JOANNA BOGIN: I just want to make sure, for clarification, exactly what the child development liaisons do. When they give the information to the telephone care coordinator, they don't say call such and such agency, they say call Judy at the agency because they know Judy. And so we really make an effort that when that family calls, they get someone who is really expecting a call and all the family needs to say is that I called Help Me Grow and that the intake person will say, "Oh okay, yes. I was expecting your call." One of the critical components of the CDL is to have those relationships and to utilize the person's name, so the family doesn't just call any number.

DR. JANICE GRUENDEL: I'd like to take what Neal and Judith said and push it up away from the family and more towards policy. How does the data that you collect through this experience, both qualitatively and quantitatively, come to inform state policy and resource investment? That makes the assumption it does.

DR. PAUL DWORKIN: We gathered data at the city (Hartford) level and found that the most prevalent concerns identified related to parenting concerns, parents' concerns with their children's behavior. This directly enabled us to advocate for statewide expansion through Help Me Grow, specifically under the banner of enhancing mental health services. If we hadn't gathered the data and if we didn't know that, that avenue of advocacy would not have been opened to us.

We also have used the data to answer some early concerns. In fact, when we initially were proposing ChildServ, the Foundation said, "aren't you merely going to increase anticipation, aren't you going to merely increase expectations without actually being able to deliver services, given the expected lack of such services in Hartford?" Our response to that was maybe, but at the very least we would document where the gaps were, where the capacity issues were, and use that information to inform our advocacy.

In fact, as Joanna suggested, there are programs out there. They may not be what initially was anticipated, but finding programs that fit, to one degree or another, has not been the greatest challenge.

MS. AMY FINE: One of the things we're interested in is the concept of kinds of collaborative linkages, and I have two questions that are related. One is, what do you know about and what can you tell us about what happens to families who are linked to two or more services? Do those service providers work together in some way that you know about in relation to that one family? Is there communication going back and forth among those? A subset of that would be what do we know about the role of the pediatrician once the family has been linked? What information do they get back? How do they relate on issues that are not necessarily a complex medical need, but socio-economic needs, other issues?

DR. PAUL DWORKIN: I would also ask Drs. Cooley and Antonelli to comment on what's been their experience in the practice setting when children with multiple needs are referred to multiple programs. How much coordination goes on directly between those programs, or is this all on the back of your role as child health providers within medical homes?

DR. LISA HONGFELD: An adjunct to that would be what is it reasonable to expect? We don't want pediatricians beating themselves up, having their expectations too high about what they can do in their practice.

DR. RICHARD ANTONELLI: Actually, that's a great segue; so first let me start with a compliment. I was thrilled to see that part of your loop, your communication loop, was a call to the primary care office to say that this family has been engaged. One of the vital components of being a primary care provider providing a medical home, however, is ongoing quality assessment and the ability to make quality improvement decisions. So, for example, when I send a child to Early Intervention, my job isn't done, in fact, it just begins.

Am I happy with the assessment? Am I comfortable that the child is making progress? And this is anecdotal, but the frequency that I need to reconnect back with Early Intervention to say, "I don't agree, you're not doing enough," is exponentially greater in the last three to four years than it ever was in my prior 15 years of practice. So I don't know if that's a comment about staffing, about agency capacity. I feel a significant ownership of the quality of service delivery within the medical home. So what kind of information, other than saying the family is engaged, gets back to the medical home provider and what kind of a feedback loop goes into that system? Is it predicated on the family being empowered enough to make the comments?

DR. CARL COOLEY: Actually, I'd like to make two comments. Care coordination within the medical home is beginning to emerge as one of its important services. The practices that we've been working with in Vermont, New Hampshire, and Maine have identified an office staff member as a care coordinator, both to make the referral and also to retrieve information back about the progress of the referral. The process of care in the office, in terms of seeing patients, continues more or less uninterrupted. This is what office-based, medical home care coordinators are looking for to improve connections horizontally with a community system of care.

The other point I want to make is that the medical home needs to recognize itself as an interface between personal health and public health at the local level. In addition to having feedback about care and services that individual children receive, using the Help Me Grow information system to provide practices and local communities with feedback about the population of individuals served in their communities would be very useful. This creates a kind of local public health database about the needs in my individual practice's population.

One of the incentives that we've found very powerful for medical home practices is information about themselves as a practice. How are they doing with groups of patients served in their medical homes?

DR. PAUL DWORKIN: Two quick responses to Richard's questions. Number one, with permission of the family, the primary care provider is informed when contact with programs or services are made. Number two, when we launched ChildServ, we said calls would only be accepted from child health providers, would not be accepted from parents, or from childcare providers. Now that was both unpopular and politically incorrect. But we could not envision how care coordination would be done if it didn't come through the child health provider's office. Obviously, we needed to get to a portal of entry for all, particularly parents, but the challenge of care coordination is still there. In fact, Help Me Grow closes the case once the family is connected to a program or a service.

So unless that program or service is capable of providing ongoing care coordination, then it reverts back to the child health provider and the medical home to do that. If that connection, for one reason or another, is not there, that's problematic.

To Neal's point about moving this all forward, if the community-based resources aren't communicating with one another, that's also problematic.

DR. EDWARD SCHOR: There's no free lunch and this is a fairly resource-intensive program. I know it's inexpensive, but it's still resource-intensive, because it's really a relationship-based system. Is that necessarily so? Because that then is the rate-limiting factor for any expansion. If to be a successful, community-based system people must know one another, have a face to a name, that's fine. But we just need to know that, because people are going to try to look for a more efficient, cost-effective system to build that doesn't rely on a very labor-intensive, relationship-based process. So the question is, can you do it without it? And if the answer is no, that's important to understand.

MS. DEDRA MARKOVICH: In terms of the replication of systems, I'm thinking about the size of Illinois and the diversity that we have, in cultural diversity certainly, but also in our populations, from the urban center of Chicago to very rural communities downstate. We have 72 counties in Illinois. We have a center, a child and family connection group, providing access to early intervention services through 25 locations in our state. Having a system built on relationships in a state our size, with the population and the diversity, seems very difficult to implement. You're talking not just about the early intervention system; you're talking about all systems for children and all services for children. I'm just wondering how that would roll up?

MS. JUDY SHAW: We're learning in NICHQ and in Vermont and in other work that I'm doing nationally the old mantra that all improvement is local. The future of all of this work is going to be what can we do on a national or state level that supports those neighborhoods and those relationships developing? I think you're absolutely right. You can't take the state of California or the state of Illinois and have a policy that's going to dictate and direct how things get done. But those people at the state level could put in place systems that support innovation and creativity, and adapt the model of Help Me Grow for any region.

Now I could take it and put it in Vermont, because we have 600,000 people in the state. So I don't have to think about a region or a county or a neighborhood. But you're not going to take it and place it into a California and have one size that fits all. So the challenge for all of us is how do we take these models and adapt them for our own environment? The relationship piece is emerging as very significant. Unlike Neal going into New England and telling New England what to do from California, what we hear over and over again is don't come in and tell me what to do, come in and help me figure out what to do and let me develop the internal resources to do it. Let me develop the expertise in my environment, in my community, and do the work with assistance and help. But I don't want to hire you to come in and fix the problem. I want to hire you to come in and help me to build that expertise.

DR. PAUL DWORKIN: My only editorial response to Dedra's comment is to keep in mind the 7 contacts required once a child is identified, once the program and service is identified, to link that child and family to a program and service. I don't know how you do that if it's not through a "face to face" type encounter.

DR. WILLIAM HOLLINSHEAD: In fairness, I should precede this with the thought that certainly we have had no sense that Dr. Halfon is coming to tell us what to do. I'd like to reinforce a point that was made in a couple of ways. Whatever the scale, whether it's Vermont or Rhode Island or Orange County or all of California, the ability to have a sense of population penetrance, to count what you're up to across whatever jurisdiction you're taking responsibility for, strikes me as extremely valuable and gets you to the policy discussion very quickly, because it gets you to the budget even more quickly. Speaking from a fairly small state in which we essentially eliminated all local public health services and built all of the direct contact into primary practice 30 years ago, we do now have a system in which we can track every child and every birth cohort in some detail. We have about 100 practices seeing all the children. For the average birth cohort, nearly every infant is associated with some practice, and about 80percent of them give us evidence of sustained continuity of care in what appears to be a real medical home. About 55percent demonstrate risk in the newborn screening with significant developmental risk that ought to be addressed. About 30 or 34 percent receive a home assessment and at least one sustained contact with a team of nurse, social worker, and parent consultant. Then the numbers go down. About 10 percent appear to be in touch with us on our information line, not nearly as rich or as organized as yours. About three percent get into Early Intervention. About two percent get into Early Head Start. The capacity diminishes quite rapidly, with much of that in privately financed childcare.

My point is that with the information system you can do that kind of population penetrance analysis. You can follow individual children and even siblings over time and see how they stay with those services or they don't. You can look at the neighborhood level because some of the most needy and culturally- isolated subsets regrettably tend to be under-served, even though they have constellations of risks substantially greater than people only a mile away who are quite deeply engaged in a number of these services. It's incredibly important and I think it actually is at the heart of this regional conversation to look at that set of connections between what we know about a whole population and the assets that we can deploy and how well they meet needs. I am interested to what degree you can count this type of data in Connecticut.

As a final comment, we've gone towards a direct contact medical home, putting parent consultants in practices with these skills to sustain the connections, rather than a central Intake and Referral function. But whether this should be a big umbrella with many tendrils, or it should be many roots with a few flowers is a debate that is far from over.

DR. ROCHELLE MAYER: Can Judy talk a little bit more about the pediatrician's role and comfort level in the referral process with a mental health provider?

MS. JUDY SHAW: We have come to understand and we've heard over and over again about the pediatrician's lack of comfort in referring to just a phone number. Now what I haven't done is said to them, "If you had a Child Development Infoline that was staffed with trained individuals that you have a relationship with and they reach out to the community, would that be a different situation?" I don't know the answer to that.

But right now, we don't have that in Vermont. So each pediatrician has to individually refer and the challenge is getting to know all of the resources. They've said that they're not going to refer to some mental healthcare provider up in Burlington because that's the first slot, or to some mental health center that they have no idea about. They risk the families coming back and saying that the referral was useless, my pediatrician isn't meeting my needs. They want to know about the child development center or program to which they're sending children. What we've heard is that they're not going to refer to the first appointment available without knowing who and what they're sending them to. Would this be different with a Help Me Grow?

DR. RICHARD SUSSMAN: I have three historical comments that relate to some of the comments that were made so far. The first speaks to Neal's point about sector-specific. It's important for us to look at the ecology in which ChildServ began here in Hartford, what was going on on the state level, and what was going on the federal level. There are similar activities in every community and in every state that can then be linked to what you're interested in doing in this type of project. At the time that ChildServ began, school readiness had become the buzzword in Connecticut. There was a lot of talk about the preparation of children for school, and the roles played by healthcare, education, and childcare to enable this to happen. Family support was a popular topic and Edward Zigler, at Yale, had developed his Schools for the 21st Century that promoted the integration of different sectors in the service of school readiness. The Hartford Foundation for Public Giving's Brighter Futures Initiative here in Hartford was the Foundation's 20-year commitment to link childcare, healthcare, family support, and early education in order to prepare children for school. The atmosphere was ripe for cross sector involvement on behalf of young children.

Secondly, there is a way to involve others from different sectors. Every community has individuals and groups who are likely collaborators. That's part of the response to Janice's question about advocacy. How do you use the other groups that already exist in your community to forward your agenda? We did push Paul and his colleagues to tell us not only how the health care community would utilize this service, but also if it would lead to increased services and better services by other sectors are well.

Finally, Paul did come to the Hartford Foundation and asked for funds for a program focusing on pediatricians. We said, "We're not interested only in funds for pediatricians." For us, this was about raising the bar across the city about people's understanding of developmental surveillance and that pediatricians didn't own that concept by themselves. In fact, parents needed to learn more and childcare workers needed to learn more. Through everyone's improved understanding, we were going to be able to do much better for our children in this community.

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