Yolanda: Yes Faye, thank you. My name is Yolanda Cantu, and I’m the project director for the Texas Center for the Study of Children with Special Healthcare Needs. The center is located at the University of Texas Health Science Center at San Antonio in Texas. Our project in our center has been studying the impact of Medicaid managed care on children with special healthcare needs and their families since 1995. Our current project has engaged in a variety of activities, including development of a local pilot in conjunction with a state Medicaid program, to test screening and identification strategies for children with special needs and managed care plans. We’ve also conducted surveys of family experiences within managed care settings, and have worked to facilitate approaches to increase coordination between health plan care coordinators and case managers providing critical help and social services to shared members and clients. So that’s a brief description, Faye.

Faye: On thank you Yolanda, and Ardis.

Ardis: Hi, I’m Ardis Olson from the Hood Center for Children and Families at Dartmouth Medical School. The Hood Center is involved in a number of projects to improve care and services for families of children with chronic illness. In this project, which we call Partnerships for Enhanced Care, having a nickname locally of P-Mac, we have had a collaboration with the two major insurers in our state that provide 70 percent of the insured care within managed care. Those particular providers have been our partners in a project that has kind of two-fold; within in their plans we have worked on methods of identifying and assessing quality of children with chronic health care in a more generic manner then the plans have ever been used to doing. At the community level we have partnered to provide community-based care coordination where the managed care plan is the partner. That model we call Enhanced Care Coordination, and it’s been delivered in four different community practice settings over the length of this project. And we’ll be talking more about the specifics of the approach to what we call enhanced care coordination.

Faye: And Jim.

Jim: Thanks very much, Faye. It’s great to be with you. I’m with the Center for Child and Adolescent Health Policy and the Division of General Pediatrics at the Mass General Hospital for Children, which is part of a very large integrated delivery system in eastern Massachusetts. And our project was really designed to improve the identification of children with special health care needs in a variety or a fully different primary care settings associated with our delivery system, and then to go forward and identify some of the needs of families that appear to be unmet, to share that information with key clinicians, physicians and nurses primarily and to see how that might improve the care of the children receive and their family’s receive as a result of those changes. We’ve been involved in a variety of work, of projects, demonstrations and research for over 25 years relating to children with special healthcare needs.

Faye: I want to thank all of you. I see that you’re not only from geographically diverse parts of the country, but also have projects that are quite diverse and cover many of the same issues and also have a lot of unique features. I’d like now for each of you to please tell us a little bit about the history of your project; how you developed the idea, who your collaborative partners are, and why you decided to get involved in this initiative. Yolanda.

Yolanda: Faye, thanks. This project--for us this project was the logical next step to our first managed care focus project which was supported by the Maternal and Child Health Bureau between 1994 and 1998. In this early work we tracked the changing delivery system and how those changes affected children with special healthcare needs and their family. We also studied the practice of case management and care coordination in different settings, and conducted surveys of physicians; families, health and human service providers, as well as managed care organizations about their early experiences with managed care. Our current project is an extension of this early work. Our major partners continue to be State Title V program, the State Medicaid CHIP Office, local managed care organizations, families and community-based organizations that provide help and other social services to children with special healthcare needs and their families. I think we undertook this work because it is critical to policy development at the State level, and because we felt that our community had a unique capacity to implement the concepts and ideas about care and services coordination put them into practice, and eventually to make a difference for families and children.

Faye: Well thank you. Ardis.

Ardis: Our history of our project starts with the activities we’ve been doing within our state and my colleagues to promote care coordination as part of the role of primary care practices. I had an earlier project by Robert Wood Johnson where we worked with practices to enhance how they cared for patients, and it became clear that practices lacked much structure or method by which they could tackle care coordination, particularly for the more complicated children. And we were inspired by one of our community practitioners who, as the medical director within his clinic, had the vision where the young man with diabetes whose care was in total disarray and catastrophe and constantly being admitted, to step out of the box and think creatively with the family and the other key community members how they could help him manage better. The solution they come up with is that they would pay him to go to the diabetic educator, and generated a set of funds from the community to do that.

To make a long story short it was highly successful, and the young man went on to a highly productive life and never got admitted again. Which made us say we need to think out of the box, how we think as a team and how we solve problems for families. And we recognized that our managed care partners in the state were the ones who had the pro-active population-based thinking out of the box mentality, more than we often had in practices. So that began a partnership between Title V Managed Care and community practices in our state to really develop a model of how we could do this in an ongoing way.

Faye: That’s very interesting. I look forward to hearing more about all the projects. And, Jim.

Jim: Ardis that’s a great story about how you got started. We’ve been doing a lot of work around coordination of care for several years, and actually have been helping the Bureau think through the definition of coordination of care and what were the components of coordination of care, and this gave us an opportunity to really test out a number of things in our settings.

We had for several years prior to the initiation of this project had some funding from the National Institutes of Health to do some work specifically around children wit asthma. And one of our key communities has a very large Latino population. And that had taught us a good deal about methods and mechanisms for dealing with a single disease. We really built on that to sort of say could we identify children with a variety of conditions, a variety of chronic health conditions, in our primary care settings. And the simple answer was, to begin with, no we couldn’t, we didn’t know how to do it. And that’s an important piece of what we wanted to try out, were methods for identification of children with special healthcare needs in a couple of different--several different primary care settings which had somewhat different kind of data bases in which to do it. So those were some of the backgrounds of our work here.

Our collaborators in this were two or three, the State Department of Public Health, which has a very active Division for Children with Healthcare needs. We work very closely them. They also have a very strong coordination program, which we collaborated with from the very beginning and in fact which has changed as a result of our work together in some very exciting ways at this point. We also worked closely with a group of parents through the Federation for Children with Special Healthcare Needs here in Boston, as other collaborators with us. So those are some of the key elements that began in our project.

Faye: Okay. Now we’d like to talk a little bit about the various models of care coordination. If each of you could elaborate for us on the model of care coordination that is utilized by your projects. Yolanda.

Yolanda: Okay. In our project target area, like in the rest of Texas, and other states I assume, there is no one model that our plan--the plans that we worked with used. Instead we worked with local plans and tried to facilitate their explication of their internal care coordination practices, particularly in reference to the population of children’s special healthcare needs. The plans, in turn, educated other service systems about their models and they themselves were educated about how they might better coordination with these service systems to improve access. Not just to healthcare, but to other services for their plan members. I think it’s important for us to understand that in our particular model we were focusing on Medicaid managed care, and we all know that the Medicaid population has a whole array of services besides healthcare. So that’s why we focused our particular approach the way that we did. And although we’ve not really formally, as this point, evaluated the model we believe that this type of coordination may reduce barriers for families, and also reduce the amount of care coordination resources that plans may need to use to manage healthcare for this particular population of children.

Faye: Oh thank you, Yolanda. And Ardis.

Ardis: Our model has been based on starting first with what the families perceive their priority needs are. The way this works within the practice setting is probably the best way to describe it, is that our staff work with an existing, or a determined member of the staff, to train them to be able to play a care coordinator role in the practice and the specific methods of doing it within this project. Patients are selected by multiple ways. The plan provides detailed data for the practice of the population of chronic illnesses, and what number has had ER visits, multiple visits and hospitalizations. The office staff from the number of people who pick up the telephone and call that determine the frequent flyers in their practice, and the physicians draw patients from their recent crises and admissions. And as the project gets going families actually requested some other families. Once a family is interested in having what is a team meeting in the office, the managed care case manager and the office nurse role meet with the family, often in a home visit, but in the office setting if they need to. And they discuss in detail the family’s needs and where the gaps are happening in their care. From that it drives who’s going to come to a lunchtime team meeting in the office that involves anywhere to four to ten to twelve people. They are the people the parents think need to be there. The structured process happens in that meeting, and by the end a clear plan is written that lets them know not only what the problem is, what the solution, but who’s in charge of solving it and who’s going to do the follow-up about it. The office nurse then becomes the anchor for that family within the practice. And so we shift the care coordination center back into the office where it’s often diffused, and then they follow up on quality measures; how the family is doing over time on a regular basis.

Faye: Okay. And Jim, could you tell us about the model of care coordination your project uses.

Jim: Absolutely. We started out with a type of care coordination that I think was necessary but not sufficient. We were testing out the notion that if we could provide more information to physicians and nurses that was parent generated, about the needs that parents face, that that would probably in and of itself make doctors and nurses take notice and do something different. The reality is that’s not enough. And we spent probably the first six or eight months working in that kind of a model, and what really happened was kind of interesting because we learned that the doctors, especially and to a degree the nurses too, said, you know I’ve come across this problem all the time and I can never figure out what to do about it. So after we sort of experimented with that model we really changed it to develop a couple of things, one of them similar to what Ardis has done, which is we developed a regular team meeting which occurred weekly which covered first of all patients who were identified either through our mechanism of coming at children with special healthcare needs or by the doctors and nurses, those ones that they thought merited some particular attention. And we also brought in local community folks. Folks who, you know, lived in the particular towns that we were working in, and who knew a lot about the community agencies, whether they were housing agencies or whether they were the Visiting Nurse Association, or whatever else, but they were really smart folks who knew a lot of what was going on there. And these sessions started out being sort of an "ain’t it awful session" and turned very quickly into problem solving. And what the doctors and nurses learned were mechanisms and methods that they could use to collaborate much more actively with the community agencies, help families get the services they need, and really move forward. So it really changed their behavior quite actively. That was the kind of coordination, it became still based on the model of doctors and nurses in their practices, but it taught them how to sort of work closely with community agencies and say, look this is something that they can do much better than I can, and that was the kind of model that we developed.

Faye: I see. Now I have another more pragmatic question for all of you. Who do you think should perform the care coordination function, and then who do you think should be responsible for paying for care coordination? Yolanda.

Yolanda: That’s a great question, Faye. I think it’s also a very tough question, and I think that different arguments can be made around the answer. We believe, based on our experience, that an independent organization should be responsible for coordinating care for plan members, again because of potential conflict of interest that care coordinators may face since they’re paid by the plan. But also, again, in reference to the Medicaid population because the usual focus of healthcare plan coordinators tends to be on healthcare delivery. And we all know from the emerging social determinacy literature that healthcare accounts for less than five percent of health outcomes. And I believe that this is probably more true for populations of children with special healthcare needs and Medicare managed care and SCHIP. I think that these care coordinators would be both health and social service generalists with a capacity to assist families in maneuvering both the health and human services systems. I think the other tough question around financing is that the states--I believe firmly that the states should pay for the service. I think that there is agreement that this is a critical service for the population. However, I think we also have an awful lot of work ahead of us on evaluating the effectiveness of the service; does it benefit certain groups more so than others? We also need to develop criteria about who should get this service. So there’s a lot of ongoing work to be done. It’s not an easy question to answer.

Faye: Oh, I understand. Now, Ardis.

Ardis: You will all resonate very similar themes. It’s been interesting because we have found that by driving our process of care coordination from the family perspective we are quickly out of simply healthcare outcomes but into many of the human service family sibling other outcomes. We’ve worked on the assumption that most care coordination is a function that many parents do themselves when things are less coordinated, and that the parents will say they do care coordination, so they’re a key member of the team. And many times these families have multiple care coordinators. So we’ve really built the model of a collaborative role where the care coordination function at the hub of sort of linking the middle is done by the medical home that the child lives in. So it’s a--and we’ve really established a collaborative role between the managed care plan and the family’s practice they’re in, so it’s a shared role and it’s gotten very comfortable. They start to diffuse and generalize. But I’m saying this is a model that’s based on the most complex kids and what they need, and that you need an active care coordinator anchor for those kids, not for every child with chronic illness. And I’m saying that particularly because when we talking about starting to pay for it it’s important to determine what’s at the level of service delivered that generates payment and I think you were referring to that Yolanda, as well. And at straight-forward care coordination we would be so lucky if we can get payment at that level, so our focus has been defining what is really the components for the more complex care coordination; make them very clear and monitorable. And then work on paying them in our function within insurance plans is that that’s a benefit these patients who have chronic illness should get from the plan, and that they should be paying for that once we can document their--the high need group that particularly needs it.

Faye: Okay. I appreciate that. Now, Jim.

Jim: Well we actually think that there are probably three types of care coordination, and they marriage different strategies for both organization and financing. So one is sort of some of the nuts and bolts things families bring. And we have a lot of families who just need help with housing, with appropriate nutritional services, things like that. And what we have found there that they don’t need a terribly sophisticated service worker to get those kinds of things, someone who’s got perhaps a Bachelor’s degree who can really work and learn the system well and then really help families get what they need; sort of a nuts and bolts worker. And we’ve actually implemented them in a number of our settings now, and we pay for it out of our own inside hospital and integrated delivery system funds. We think that’s part of our responsibility directly here. But that deals a lot of the sort of the, you know, really daily needs of family. The second is the mental health things, which is really only a part of what we’re talking about here. But at that level we don’t have good answers. What we’re experimenting with now are having social workers who are trained in--psychiatric social worker who are really working right next to our primary care physicians and nurses, and they’re available to see families immediately when they have mental health concerns. And in the third are children with the more traditional special healthcare needs where we’re predominately moving toward a model that’s going to include nurses as doing most of the care coordination. We’re finding that doctors don’t do it very well, despite our cajoling and efforts at moving them to do that. And I don’t think we have good answers as to who can or should pay for that. Part of it is coming now from our State Health Department, which we’re really very excited about, but I don’t think it’s going to be able to pick up all the tab for this important function.

Faye: Well we’re going to have to continue to do more work in this area, obviously. But you all have some really good ideas. Now I’d like to ask you about strategies that you used in your projects to engage the managed care plans to implement the care coordination model, and how you perceive the benefits to the managed care plans in doing so. Yolanda.

Yolanda: Thanks Faye. I think in our work we spent a lot of time in coalition building across service systems and groups, having many one on one discussions with the plan leadership in terms of trying to explain why the topic was important, and also working closely with the staff that were designated to be the plan care coordinators. Additionally, our project work with local case management coalitions to develop training geared to bring together care coordinators from the plans and case managers from different programs serving populations that were members of the plan. This training initiative has been highly evaluated by participants from both sides, and is an ongoing project that will continue past our project end. In terms of benefits to the managed care plans I think historically plan care coordinators have been isolated, at least in our system, from other providers in the community that provide essential services to children with special healthcare needs and their members. For example, Title V and early childhood intervention, as well as Medicaid case management services. These service systems connections have broaden the plans outlook. I think their focus has shifted from acute to long term care. And I think that most importantly that they recognize that they have many partners that they can work with to improve the health of their members, as well as possibly reduce their cost. I think--we’ve gotten some feedback from the plans themselves that--where they’ve shared that they think--they think of their members as members of the community versus just being members of their plan. So I think we’ve had some pretty good outcomes as a result of the work.

Faye: Oh, that’s great. Now Ardis.

Ardis: It’s interesting to talk about strategies because by working with two large private insurers one really has to be able to work within their business models and their structures within their organizations, and become immersed and understand those. And one of the key issues we found is that they’ve never thought about children with chronic illness as a group. Working with them to get identifier ICD codes and actually run data on their plan and have them see the size the population, the costs they’re generating, really has--the plans are very elderly focused and special conditions focused where little of it are pediatric conditions. So there’s a real shift in working with the plan to have them include this group of children on the map. Once that process begins, and that’s working within--many times the inside leaders in the plan who are working providing children with service--and they’ve become a link into other levels in the plan. The process happens then where the plan starts to develop a pride that this is a group that they really want to feel that their agency can say they do a good job with. Being able to--one of the presidents actually went to a team meeting and could understand what a family went through. Those are key in terms of getting incorporated in. The other strategy or caveat is the plans constantly are going through various administrative crisis, and to work with the plans you really have to remain flexible and able to integrate your project in with their longer term agenda. If you’re very rigid you’re going to find that you’ve lost your partner. The plans in term, from the managed care plans, feel a great deal of benefit. Their case managers shift their role to becoming partners instead of being perceived both by the family and the practice as enemies they are now are having ongoing phone talk follow-up. A lot of the parts of care are much smoother from the plan perspective, and as well as from the family. That case manager is not seen as somebody who just does denial, but is working on their broader plan.

Faye: Wow. Well that’s very impressive. Jim.

Jim: Well we have two kinds of plans we worked with. One was a--is a wonderful Medicaid managed care plan in New England and the Boston area, that is really committed to children with special healthcare needs. In fact it’s one of their highest priorities. And thus they were really excited about anything that could be done to help to improve the coordination of care for children with special healthcare needs. We didn’t have to do much at all to get them engaged. On the other hand the private plans, and there were really basically two and half that we worked with very actively, have consistently, as with most other plans around the country, had substantial financial problems in the last couple of years. And keeping their attention, given the fact that they have staffing changes, has been a real struggle. They have been interested, certainly in the issues of how do you identify children with special healthcare needs in the plans, but they’re a little less sure about what good it is for them to be involved in care coordination. And we’ve found it easier for them to buy into the notation of care coordination for children who might get hospitalized, especially kids with asthma for example. But they’re having more trouble still staying tuned into a broader model of care coordination, which is directed more toward helping families.

Ardis: One of the things--I wanted to chime in--I didn’t mention that we’ve been able to do with the plan is to track the cost of care that happened when we did care coordination. And in fact we were able to demonstrate to the plan substantial cost savings. So even though that wasn’t the primary purpose to it, it certainly got their attention.

Faye: Well that’s something we all would be very interested in learning more about if, you know, you have some materials to share with us.

Ardis: One of things that we will be making available afterwards is opportunities to see the specifics of how our pilot population saved money. But we were able to, even when we took away the children who had really high costs of inpatient catastrophic admissions, we saved on some (inaudible) children a hundred thousand dollars over six months before they had a our team meeting and after they had their team meeting. And when you try to talk to the higher level of management within the plan they can like a good idea but they run on money.

Faye: Thank you so much for sharing that with us. For all of your listeners to know, along with the web cast, we have a resource section and much of the information and resources that our speakers are sharing with us will be posted there, as well as their contact information if you’d like to get in touch with them. Now I’d like to ask each of you about some of the obstacles you have had to overcome in implementing your model. Yolanda.

Yolanda: I guess for us the obstacles we faced all along have been related to, I think Jim eluded to it earlier, I think the type of plan that you work with is real important. We’ve had three plans we’ve worked with locally, two have been traditional private sector plans that have taken on the Medicaid managed care population, and then we’ve had another plan that was created by the local hospital district who has, of course, experience in working with the population, and the indigent and poor people in general. And so I think it’s reconciling the two different cultures has been a critical obstacle, and that’s meant everyone really trying to understand where everyone’s coming from. But again that takes time, it’s been a process, and the frequent changes in plan leadership and buy-outs all those create more problems. Again the usual stuff we often talk about are lack of trust, lack of understanding about why they’re expected perhaps to think differently about the population, of finding good arguments and having a discussion around those topical areas. And I think in terms of--in talking about the plans, lack of knowledge, I guess I would say in general, as to how working with others might actually be good for their members as well as for the plan’s bottom line. Thank god. Those are examples of some of the problems we’ve faced.

Faye: Okay, thanks. Ardis.

Ardis: Some of these we’ve been eluding to when we’ve been talking. One of the challenges we talked about was at the plan level, and as you work with plans and you, for instance, have them running data and looking at things you have predictable crisis between HEDIS reports and administrative buy-outs that keep giving you difficulty so that’s one obstacle within the plan. But I wanted to talk about a separate issue, and that is we, in our practices, are advocating that they change how they currently do their business; that they run team meetings where the primary care doc comes to the meeting. And what we have found, and we don’t administrate, we don’t own any of these practices, so we’re engaging independent practices, and what we’ve found is that we really need to, in each practice, find the defacto leaders in the practice, the defacto people who are controlling how the office runs, as well as engaging the general physicians leadership. That those are two things. So in one place there may be an administrator one level away that’s controlling how a nurse can spend her time and you need to determine those. Then what we’ve also found is that physicians have to have their souls changed one by one. And so they can like the whole general idea but until the doc sees how his individual patient went and how his life is easier because they’re not on the phone all of the time, and somebody else is helping. So there’s a certain more gradual startup that has to happen in a practice where all the key members have participated. Then it can really get its own life and get rolling. And so I’m talking about the difference between starting and becoming established. And I think that is one of the challenges when you’re trying to change how care is coordinated.

Faye: Well I’m glad that you were able to delineate this for us. And it’s something important for us to know about it. And, Jim.

Jim: We faced similar issues with like the plans that Yolanda talked about, and lot of similar issues that Ardis talked about it with respect to really capturing the interest of physicians and nurses. And there really is an interesting growth process, even though our doctors and nurses are pretty seasoned. These are folks who have been doing this for a while, and really they require sort of a mind change which took some time. We found that good. I’m just going to outline a third problem, an obstacle we faced, which was just figuring out who these children were in our primary care settings. And, you know, if you talk to the physicians they all say oh, I know who these kids are, and then they really didn’t when you sat down with them and try to come up with a list. So we played with a variety of ways of identification; we think we know how to do it now. But it took us a long ways to find--a long time to find right ways to identify children in primary care settings.

Ardis: Okay, would you elaborate? It sounds great.

Jim: I think we’re going to get that in a few minutes so I thought I’d wait.

Faye: Yeah, we will be. Now I’d like to know from each of you how young adults with special healthcare needs and families were involved in your respective projects. Yolanda.

Yolanda: Yes, well in our project they were very actively involved actually throughout the life of the project. And their participation really took place through three types of venues. We had a project advisory committee that met quarterly and we had five family members that joined us and actually stuck with the project throughout the life, which was real real gratifying. They were very active and have lots of ideas. They had created the family support groups and so had an awful lot of input to give us in terms of the development and the processes that the project used. They also helped us with survey development and testing, helped us with translation of instruments. They participated in consumer panels and guided the work of the project at its different states. So they were very invaluable and we couldn’t have done what we did without them.

Faye: Oh, that’s great. Ardis.

Ardis: We started out our model thinking that we wanted--we had families involved from Family Voices working with us on how we designed initial models, the basic way of making sure we do a home visit and that we have family’s needs driving the process. It came from listening to our family participants. But in addition, we started with the notation that we really wanted families on the team, and having a family advocate that would be there who had experience having a team meeting and would help the process be less formidable to parents. And we found that a really insurmountable challenge, that when you try to have families who are struggling with their own work and their own children’s chronic illness being able to participate in a team meeting despite their interest was just impossible. We did evolve that into a family--with the help of Family Voices--a family advocate role and a family that you knew who had been through the process that parents could call up and talk to what am I getting into before they would do a team meeting or if they had anything they wanted to talk with another family about afterwards. We were surprised that when the family chose who to have come to the meeting, even there are 12 people in the room, it was positive for the family. Our concerns about being intimidated were not there. So we find it’s really hard at the frontline delivery level to have family participation on a regular visit and then step back.

Faye: Ardis, was the family advocate a staff member of your project?

Ardis: No, they were --they were paid for their time when they did these activities, but they weren’t an employee.

Faye: I see, so they were like a consultant?

Ardis: Un-hum.

Faye: And Jim.

Jim: Well a couple of ways we involved families. One was that for in each of the practices that were involved, we developed some surveys to ask families how they viewed the kind of services they were getting currently and what they felt to be their unmet needs. We used that as a strategy to sort of develop family or child specific programs for each family that was involved in the program. In addition to that we had an over-arching advisory committee that had, you know, city politicians, plan representatives, providers, purchasers on it. It also had a number of representatives from the Federation of Family with Special healthcare Needs, were members of that advisory committee, so we involved them in sort of reviewing what we were doing. In addition to that, in each of the practices we also developed a practice advisory committee which was about half families, so that they could really talk about what the practice was trying to do to change. And we found that a very valuable experience.

Faye: Well thanks. Now I’d like you to address the issue of whether you feel all children with special healthcare needs require the same level or type of care coordination, and how each of you, in your projects, have triaged children and families into various levels of care coordination. Yolanda.

Yolanda: Yes, Faye. The--my answer to that is definitely now. However, that’s a qualified not. We need a lot of work to be done, in conjunction with plans in this area, to determine what an appropriate level and type are. I think in some ways this is an activity that’s closely associated with different identification strategies that are in current use, as well as under development. I think the example that we always talk about is that one associated with children with asthma. Are all children with asthma children with special healthcare needs? And if yes, do they all need care coordination? Well we know that that’s not true. But we also know that some of these kids may benefit from disease management program, however, some of these children may not do well in disease management programs and might benefit from care coordination. So I think there’s just an awful of lot of questions that a lot of the ongoing research have brought to the forefront, and I think Jim eluded earlier to the way they think about it in terms of, perhaps, three levels. And we just need much, much more work to be done in this area.

Faye: Well, I understand. And Ardis.

Ardis: We clearly have, in the design of our project, set up multiple levels, and have--give the practices some guidelines and criteria about what the kids with complex needs, kids that have multiple specialists, kids that are having crises. But at some level we trust the practice to recognize these are the most complicated kids that we need to do the full-court press. We have some other interesting data that kind of talks about who gets care coordination because within our health insurer we conducted a survey that we have data on over 1300 children with special healthcare needs in the plan. And that helped define a population where they perceived they had a chronic illness and had functional limitations, or developmental delays as well. And it was interesting to see that although access to some services were important only about half the families wanted care coordination services per se, when they were explained what they were. And so I think it is very important, as we plan these things, to recognize that families are the final word also about whether they think they--they need to understand what’s being offered--but not everybody wants that.

Faye: Okay. Jim.

Jim: Well we feel pretty strongly that different families need different kinds of services and different levels of care coordination, and it’s interesting, you know, a lot of people when they start talking about children with special healthcare needs think about those children who have multiple specialists and have two or three pieces of additional equipment and so forth, and we’ve used, like the bureau has, a pretty broad definition of children with special healthcare needs. And we’ve really worked very hard to implement that. So there are many kids who don’t sort of fit that traditional model of, you know, of severely involved child with multiple pieces of equipment. Though kids do need very different kinds of care coordination, and they need it at different times. They may need it at major transitions like hospital to home or home to school or adolescents, so that there are transitions. And there are some families who need it just briefly, like a few months time and things get into shape and things work fine. There are other families who need it over a long period of time. I don’t think, quite frankly, we know enough yet about how many families fit into which kinds of patterns at this point. What we’ve tried to do in operationalizing this in our unit is to sort of say let’s sit down with the families and work it out with them and decided what they think they need and let that be the driving force behind how we try to organize it.

Faye: Well, I--it’s a very interesting topic and obviously one that needs a lot more of our attention because, you know, there are other things to consider like families who need types of wrap-around services and social service support, and different types of challenges within the family situation in addition to the child’s special healthcare needs. You know, we’ll have to discuss that at a future time. Now I’d like to ask each of you what you feel has been the single greatest achievement of your projects.

Yolanda: Faye, this is Yolanda.

Faye: Yes Yolanda.

Yolanda: I guess that for our project we feel that placing and keeping the needs of children with special healthcare need in a managed care setting on the state policy radar screen has been a major accomplishment, so we feel that it’s helped to keep moving the agenda here in Texas forward. Additionally, the other outcome that has been very positive for us has been the capacity to go across the state and train managed care plans and their care coordinators, as well as case managers, in the different regions of Texas about the population, and different ways of operationalizing strategies to provide good care and services for the population. So I think that’s been--one of our major accomplishments.

Faye: Very good. Ardis.

Ardis: I guess there are two things that come to mind. One of the things we really have done is a paradigm shift in our insurers where they now expect to be thinking about improving care for the children in their plan with chronic conditions. And where we were banging on the door and say remember them, not the elderly, I think we’ve gotten to that point where they expect that that’s going to be part of the discussion. And probably importantly, there were no functional ways for primary care doctors to take on coordinating care and partnership with managed care on their complicated patients, whether they were complicated for multiple reasons not just, you know, having extra tubes in their body. And there was no mechanism for them to feel comfortable stepping on board, and I think we’ve now given a structure and a mechanism and the supports to proceed further with that.

Faye: I see. And Jim.

Jim: Well I think the most important thing that we accomplished, there were a couple of them--just like Artis--is a paradigm shift but on the part of physicians and nurses. I think they started out this process thinking that, you know, doctors and nurses working together in practices can do it all and the most striking thing to me is the sort of building consensus among a large number of primary care physicians that that just isn’t true any more. That these are complex kinds of systems of care children are in, complex kinds of communities that they’re working in, and the way to make it happen is really to develop much more collaborative models of care. Now I don’t know where we’re going with that. I don’t even think we have answers yet, but we’re certainly experimenting a lot now with a variety of different new models of collaborative care that I think are going to be much more responsive to family needs than our previous models were.

Faye: Well that’s wonderful. I’m happy to hear that. And we’ll look forward to hearing more about this. Now I’d like to know how each of your projects addressed the healthy people 20-10 performance goals that children with special healthcare needs should have adequate insurance. Yolanda.

Yolanda: Faye, unfortunately our project really did not focus on that particular goal. There’s a--the whole financing issues are real complex, I think, that because the project has focused and worked very closely with the policy people in state Medicaid and SCHIP programs, as well as worked with local plans, that everyone recognizes that having access to adequate healthcare insurance for this population is critical. So I think that we didn’t directly do work in there but we have indirectly at least put the idea of adequate health insurance and addressing the needs of the population on the radar screens, and not just of the state policy people but if the plans that have worked with us.

Faye: I see. Ardis.

Ardis: Well one of the things we’ve approached is, is that adequate insurance is insurance that meets your needs, and that we’ve really established a different case management benefit provided for the children with chronic conditions. And in fact it has generated more flexible responses and some services getting paid for that wouldn’t have routinely been in the family’s benefit package, so in addition to sort of standard case management they’re getting super case management. And then because we’re working in the community site we really are strengthening the medical home part of our practices as well by having them become the center of the wheel in the care.

Faye: Okay. And Jim.

Jim: I would say all the things that Ardis said, that’s really how did things here too. The getting the children adequate insurance in, I don’t’ know if in Massachusetts, really depends on a great deal on a variety of other players that were not key to this particular project, and it’s been an up and down experience over the last two or three years time.

Faye: Okay. Now since we only have a few minutes left in our web cast, I’d like to ask each of you to share with us a little bit about plans you may have for continuing the work you’ve been doing related to children with special healthcare needs in managed care, and also if you have some recommendations for the Maternal Child Health Bureau to promote care coordination within managed care settings. Yolanda.

Yolanda: The--I think for us the Texas Center for the Study of Children of Special Healthcare Needs here at the UT Medical School will continue. We’re in the process right now of getting additional foundation support to continue some of our statewide training activities in this arena. The Center remains committed to doing this, and we will continue doing levels of work in terms of advancing the agenda for children with special healthcare needs. We will continue, for example, to maintain a local web page for the coalition building that’s been going on and expanded to provide information to case managers and care coordinators and families, but again we plan to stay heavily involved in the area and continue to seek support from different sources to continue our work.

Faye: Do you have any recommendations for the Bureau?

Yolanda: I think in terms of recommendations, I think the Bureau needs to recognize, I mean I think they recognize this I don’t know that it always comes across as a clear take-away message, but they really need to emphasize that in terms of managed care the states are unique and they need to recognize differences in the literature that they put out and in how they target their messages. I also think that they need to encourage, the Bureau needs to encourage, state policy makers through more substantive direction from CMS, formerly HICFA, around perhaps what best practices around care coordination look like. I know in our own experiences with plans they say talk about but there’s issues around really what does good look like and how do we operationalize it, and I think our project is at a point where that’s the next step for us. We’re talking about local implementation and operationalization of best practice models here. But anyhow I digress, and I guess finally at the local level the Bureau needs to encourage connections between the plan care coordinators and other service systems; they really need to emphasize that those connections need to be made.

Faye: Thank you Yolanda. Ardis.

Ardis: I’m going to turn them, well I’ll talk about them in two direction. One of the things that’s been very exciting to us in our partnership is we felt that the next thing was that practices really needed to get reimbursed for these activities. So in working with both Cigna and Blue Cross Blue Shield we’ve gotten their commitment now to reimburse the office nurses for these activities that they’re doing. We’ve costed out the time and the length the time activities it takes these nurses and they have now approved funding 200 more children in our state, receiving funding through primary care practices, that plus funding physician quality incentives to participate. So we think that that’s the next direction, is that the plan see it and start to support it from their financial end. It’s more challenging about how Maternal Child Health can support this. I’m struck looking at the American Association of Health Plan’s national meeting that with regularity is now discussing chronic illness management and chronic illness programs, and yet it’s rare as hen’s teeth to see any pediatric aspects talked about in those settings. And so I think there’s two levels really; there’s a national awareness where if they can help plans see successes where it happens that would be appropriate, and then I think the real work, unfortunately, has to happen plan by plan. You know it isn’t true, you’ve seen one plan you’ve seen them all. And so I think supporting that kind of level work is also going to be needed.

Faye: Thank you Ardis. Jim.

Jim: Well, one very exciting thing that’s happening in Massachusetts is that our state health department in its Division of Children with Special Healthcare Needs has initiated a statewide pilot program relating to care coordination with children with special healthcare needs. And that was in many way modeled on the lesson on what was learned in our project. And I’m really delighted that one of our major primary care units is one of the key sites for the implementation of this new phase program. So we’re seeing some real movement in the state to looking at ways that we can take this model and go beyond demonstrations to really to really statewide implementation. It’s going to take a lot of support, you know like may other states we’re not in the greatest budget time right now, but I think over time we’re going to do something and it’s going probably be based predominately on state monies, but that are going to be very exciting. We’re really--we think this is an amazing step forward for the--for Massachusetts. With respect to recommendations and activities with the Bureau, there’s a lot of stuff the Bureau’s doing that’s really very exciting including this effort right now to get this kind of web cast together, because I think the lessons from these multiple projects are really lots of incredibly rich and very important lessons and it’s exciting to put them together. You know, I think we know so much more from these experiments as to what care coordination really is, what the different models are, that there’s a real goal for getting word out. I mean everyone’s know for years care coordination’s a great idea, but we know more about what it really consists of, what the components are, who needs what kinds of care coordination. Those things I think we’ve learned a great deal from and it would be marvelous to have the Bureau put that together usefully.

Faye: Well thank you Jim. And I want to thank all of you. You have given us some very valuable insights. You all should be very proud of the really significant accomplishment that you have been managing to achieve in your projects over the last few years. I think we’ve gotten really important information of you. Again, to our audience, the resources and contact information for the speakers will be posted in the resource section. You’re all doing some very important work to help children with special healthcare needs and their families in our country. I want to thank you for logging onto our web cast production on Children with Special Healthcare Needs in Managed Care. We’re really interested in your comments and questions about the web cast, and we invite you to contact the project officer, Lynda Honberg at lhonberg@hrsa.gov, or you can reach her by voice at 301-443-6314. We hope that you’ve enjoyed this broadcast, and that you’ll join us for future broadcasts on Children with Special Healthcare Needs in Managed Care. Please note that once each web cast is aired for the first time it will then be archived on our website which is www.uic.edu/sph/cade/kidsmco and it can be accessed at any time day or night. Thank you for joining us. Well I want to thank all of you, you did a great job. We could have continued this discussion for a few more hours.

Yolanda: It was great guys.

Faye: An interesting process.

Ardis: Thank you Yolanda.

Yolanda: It was really good.

Jim: Okay, thank you.

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