John: I’m Dr. John Neff and I’m the Director for the Center for Children with Special Needs in Seattle and also on the faculty at the University of Washington and the staff of Children’s Hospital. And the purpose of our project has been to implement and evaluate a system of care, a system that identify and track children with special healthcare needs in health plan data using an identification system which is based on ICD-9-CM diagnostic codes and through this to try to get an idea of what is the prevalence of certain conditions and if it possible to track children with chronic illnesses in a health plan data.

John: Well, our collaborative partners are the State of Washington, the Department of Health and the Office for Children with Special Needs and also a health plan in a northwest Washington state area for counties and the Children’s Hospital. Many of us are based, or all of us are based at the children’s hospital and one of the reasons that we all have had a real incentive to work on this area is because we’ve seen firsthand the impact of the healthcare system on children with special healthcare needs and also the need to be able to support them in the emerging healthcare market. And all of this starts with really identifying these children. If you can’t identify these children you really can’t do a lot to work towards improving their healthcare in any way. Partly because these conditions are so rare mostly, except for asthma, but you have to be able to group them into some type of methods that you can identify and track. This has also been an initiative of the State Department of Health, the Office of Special Health Care Needs whom we have served under with a contract. So it all comes together that way.

Faye: Could you share with us some information about how youth and families of children with special healthcare needs have been involved in your project?

John: We’ve had parents on our advisory committee with special needs. In our own office we have two individuals who both have children with special needs and we are able to access, fairly easily, a fair number of children in the state whose families in the state who have children with special needs and they have been involved in the design part of our project.

Faye: Oh that’s wonderful. Now could you tell us what you think has been the single greatest achievement of your project and also, were there any obstacles in achieving your project goals?

John: Well I think the single important thing that we’ve been able to demonstrate is the you really can use a software and the software that we’ve been using is called the "Clinical Risk Groups," which have been developed by the National Association of Children’s Hospital and by the 3M Company to identify children in administrative data and it is possible to understand their finances and some of the patterns of care that they are receiving. What we have found in this is a very easy and fairly accurate to identify children at the high end of the severity spectrum, children who you know are going to interact with the healthcare system. This type of identification though, in administrative data, does not do a good job in identifying children that have mild chronic illnesses or have illnesses that are characterized by mental retardation or learning problems. But at the other end of the spectrum, such as leukemia and cystic fibrosis and diabetes and children that have a multiple of complex problems, it does a very good job at identifying them.

Faye: I see. Now, can you tell us please how your project addresses the Healthy People 2010 goal that all children with special healthcare needs will have adequate insurance?

John: Well the first step in this is to be able to identify them in the healthcare plan data. It doesn’t necessarily identify children who are outside of the system and using administrative data is not a way to be able to identify them. But you can identify children once they are within a system and to see what the financial impact of care is on their condition and also to make sure that they are getting adequate care within the environment that they’re enrolled.

Faye: I see and based on your project’s evaluation, what recommendations do you have for the Maternal Child’s Health Bureau Division of Children with Special Healthcare Needs to assure adequate insurance for children?

John: Well I think it is certainly multiple ways of identifying these children and this tool will be very good at being able to identify children in Medicaid and or private insurance data and to determine if they are indeed getting adequate care within that system. You probably have to take it one step further, that once you have identified the children go to some system of primary data collection to see if their needs are being met or not, but at least it’s a way to find out initially who they are.

Fay: Okay. And what are your plans for continuing the work you’ve done related to children’s special healthcare needs and managed care?

John: Well right now we’re looking to use this tool, and we’re working with the health plan, to use it to identify children who are eligible for fairly intensive care management. And by identifying these children up front, we can fairly quickly contact the families and the practitioners to make sure that these children are being adequately managed and they’re getting the appropriate services. If not, then you can move right in and align the services appropriately for those individual children. The nice thing about this is that by using this particular instrument you can grade children by severity, so that you can get all spectrums of severity of conditions and you can design care management appropriate for the severity and the specific groups of the conditions.

Faye: Could you give me an example of that please?

John: Well an example of this, if a child that has multiple problems, fairly complex, this is a child with a spinal cord defect and mobility problems and on top of that might have a pulmonary problem, a child like this with multiple systems really needs multiple levels of care management. And it’s a fairly complicated problem. On the other hand, a child with Attention Deficit Disorder is going to require a different level of management, fairly much directed toward the specific condition Attention Deficit Disorder and being sure that that particular condition is being addressed by appropriate providers.

Faye: Well, thank you for explaining that, I really appreciate it. We’re going to ask our next speaker now, Dr. Shenkman, from Florida to tell us about your project.

John: Thank you very much.

Betsy: Thank you Faye. My name is Betsy Shenkman and I am an associate professor at the University of Florida in the Institute for Child Health Policy and our project had two main phases. The purpose of the first phase of the project was to examine various approaches that are available, to identify children with special healthcare needs. And there are many approaches that are out there, there are several survey tools that are available and there are also strategies that managed care plans use and so our first goal was to try all of these different strategies and then describe the number and the characteristics of the children with special healthcare needs that we identified using these different approaches. We also had a second phase in our project. And the second phase was to develop quality of care indicators that were specific to children with special healthcare needs with a particular emphasis on measuring the medical home concept, for these children, and also in measuring unmet healthcare needs and out of pocket spending that might occur, in terms of them trying to get needed healthcare for their children. And we worked with our project partners to incorporate these quality of care measures into the quality assurance protocols.

Faye: Okay, now could you tell us a little bit about the history of your project, how you developed the idea, who are the collaborative partners and why you decided to get involved in this initiative?

Betsy: We first became interested in the work for our project through work that we had done with more than 15 different managed care plans in Florida. And as part of our working with these plans, we interviewed health plan administrators about the definitions they used for children with special healthcare needs and how they went about identifying these children. And we found out very quickly that many of them don’t have a definition for children with special needs and, in terms of strategies that they used, there were many different strategies but never one clear focus. So we realized that this as an area where further work needed to be done to assist health plans in finding these children. We also asked the health plans about the kinds of quality of care measures that they used for children with special healthcare needs. And none of them had any kind of measures that were uniquely focusing on that population and so we also saw this as an area where there was a great deal of room for improvement and so we formed a collaborative partnership with Florida’s Title V Agency, with the state Medicaid program, and also with the state children’s health insurance program and all of their participating health plans to use different strategies to identify children with special healthcare needs and then after the children were identified to track the quality of their healthcare.

Faye: I see. Now, how have youth and families of children with special healthcare needs been involved in your project Dr. Shenkman?

Betsy: The project does have a Project Advisory Committee and we have both parents and children with special needs on the advisory committee and they have been really an integral component for us in terms of looking at all the strategies that we use to identify the children, making recommendation about how effective they thought those strategies would be and then reviewing our project results. And they also made recommendations about the kinds of quality of care measures that they thought were important for this population and then are in the process now of reviewing our findings related to the quality of care.

Faye: Oh good. Now, could you share with us please what you feel has been the single greatest achievement of your project and also if you encountered any obstacles during the course of your project?

Betsy: Well we consider probably the greatest achievement in our project is the screening of all of the applicants to Florida’s State Children’s Health Insurance Program for the Presence of Special Needs. We worked with all of the state agencies that I had just mentioned to include a screening question on the application itself so that any family that fills out this application indicates whether or not they think their child requires healthcare services more than another child of his or her age. And then any parent that indicates "Yes" to that question, that application is automatically sent to the State Title V Agency to screen those children to see if their eligible for the Title V Program in terms of both medical and financial eligibility. And so we consider that really one of our greatest achievements in terms of this project. In terms of obstacles, we, during the course of the project, realize that there were more refined screening tools that could be used to screen for the presence of special needs. And we have recommended to the state that they change the application to the S-CHIP program and include these more refined screening questions and the state so far has been reluctant to do that because they don’t want to change the application form and also they’re worried about the programming costs that would be incurred to scan in the new form and process the data. And so that has been an obstacle that we’re facing right now in terms of trying to refine our work further and have the state implement those refinements.

Faye: Yes but it is really remarkable what you’ve done about having this built into the Title XXI the State Children Health Insurance Program and we’ll be very happy to put a link about that on the web site so everyone can get more information.

Betsy: Great.

Faye: How does your project address the Healthy People 2010 goal that all children with special healthcare needs will have adequate insurance?

Betsy: Well we think that the identification process in and of itself is the first step and the most critical component to ensuring that children have adequate insurance. If you can’t identify these children then you can’t refer them to the appropriate services and so, as I mentioned before, through the identification process, children in Florida are now referred to the state Title V program and this program in Florida has an enriched package of service and it also has a highly specialized provider network that is particularly geared towards meeting the needs of these children. And so we think that is a major and critical step towards the 2010 goal of ensuring that the kids have adequate health insurance. And then second, as Dr. Neff has mentioned, just identifying the children really is not enough, the next step is to be sure that the quality of their care is what it should be and we think that we have also addressed the issue of adequacy by incorporating better of quality of care measures for these children in the state Title XXI program quality assurance package and also in the quality assurance package for the Title V program.

Faye: Okay and what recommendations do you have for the Maternal and Child Health Bureau to assure adequate insurance for children with special healthcare needs?

Betsy: In terms of the recommendations, I think it’s important for the Maternal and Child Health Bureau to continue to work with State Title V agencies but also the Medicaid agencies and the state Children’s Health Insurance programs to incorporate these screening measures and make sure that the applicants are screened for appropriate referrals to the needed healthcare programs. And in terms of the large scale screening that went on in Florida, more than 6,000 new enrollees were enrolled in Title V over the last two years alone, because of these screening procedures and so I think if the Maternal Child Health Bureau could continue to work with states on strategies such as these then more children will be in programs that are appropriate for them.

Faye: Okay and what are your plans for continuing the work that you’ve been doing related to children with special healthcare needs and managed care, Dr. Shenkman?

Betsy: Well our major focus right now is to continue to work with Title V and S-CHIP and Medicaid to revise the application form here in Florida to incorporate an expanded series of screening questions. The predominate interest is in using the CSHCN screener that was developed by the Foundation for Accountability and we are very diligently continuing to work with the state officials to ensure that these series of questions are included on the application.

Faye: Well thank you so much for sharing the information about your project. Now we’re going to hear from Sarahh Thorson from Minnesota.

Sarah: Hi Faye.

Faye: Hi.

Sarah: My name is Sarahh Thorson I am a policy and research supervisor with the Minnesota Children with Special Health Needs Program at the Minnesota Department of Health. We’re the Title V program for the State of Minnesota. Our project had two focus areas. The first was to identify and track children with special health needs enrolled in managed care plans and to assure that children, once identified, have access to a medical home that’s prepared to meet their needs. Assisting managed care organizations and identifying kids with special health needs is critical for the reasons that John and Betsy already provided, in order to do any kind of follow-along, any kind of quality assurance, kind of looking at benefit packages you have to be able to identify the children. We were looking at evaluating existing tools or initially we had thought maybe we’d come up with tools of our own but decided that the existing tools were so well-tested that we wouldn’t even consider coming up with something new. But not only in terms of the population that each tool would capture, but the acceptability of the tool in a managed care setting. We all know that kids with special health needs require a continuum of services to maintain and improve their functioning and overall health and the primary care physician plays an extremely important role in assuring that outcome, so we decided that once we had identified the children using the various tools that we were going to try, we’d address the barriers to the provision of a medical home from the physician perspective.

Faye: Could you share with us a little bit about the history of your project, how you developed the idea for it, who your collaborative partners are and why you decided to get involved?

Sarah: Well at the time we started this project Minnesota was examining and rolling its Medicaid population with chronic illnesses and disabilities in managed care plans, a lot of managed care plans at the table as well as the Title V program and that certainly the identification issue came up and we had tried within the state using different risk adjustment mechanisms and things like that to identify people with disabilities just in the Medicaid population and had some real difficulties doing that. So that was sort of the, what convinced all of us, we really needed to investigate this further. And we’ve had long partnerships of managed care organizations between the Title V program in this state and Medicaid, for that matter. Our partners are one health plan called UCare Minnesota, which serves the Medicaid population exclusively Medicaid and other public programs and then our other partner is Health Partners Research Foundation. Health Partners is a health plan organization serving mainly privately insured, maybe private insurance--they do have some Medicaid products, but by and large it’s employer-based coverage.

Faye: And is this correct that, my understanding is that in Minnesota, unlike many other states, there is a high percentage of children with significant special healthcare needs were enrolled in Medicaid?

Sarah: Yes. Oftentimes Medicaid is the secondary coverage that--we have a fairly large TEFRA program, Katie Beckett type of program where middle-income families who have a child with a functional disability can participate in that program as the secondary health plan, but they would have a plan like Health Partners, for instance, as their primary coverage and then under a Fee-For-Service arrangement have their co-pays, deductibles, things typically not covered by private insurance picked up by Medicaid.

Faye: I see. Now, can you tell us please how have youth and families of children with special health care needs been involved in your project?

Sarah: Family Voices is very, very strong in Minnesota and the Title V program and Family Voices program work fairly closely together, so Family Voices helps us. Certainly on the project it’s been an advisory capacity with the whole direction of the project and then families have been involved when we look at particularly supporting the medical home and defining what’s important to families. So we’ve used focus groups, we did an internet survey of our families, and all this, all of the work of the Title V program has done under the guidance of the Maternal and Child Health advisory counsel of the Minnesota Department of Health, which also has a parent representative on that as well.

Faye: That’s great. Now, what is Family Voices?

Sarah: Family Voices is a grassroots national organization with a chapter in each state that speaks for, at least we view them as speaking for, on behalf of families in their state. They reach out to a number of families in our state and they either do surveys or provide information and access. And we really depend a lot on them to sort of take the pulse of what’s going on in our state and how things are working for kids and families with special needs.

Faye: Well I’m really happy to hear that. We’ll include a link for Family Voices--

Sarah: Oh, good.

Faye: --With this web cast. And I think all of you know that I’ve been volunteering for Family Voices for a long time and --

Sarah: Did I describe it appropriately?

Faye: Yes. Yes. Well we want to make sure, you know, everybody --

Sarah: You get everything right --

Faye: is familiar. And what do you think, Sarah, has been the single greatest achievement of your project and did you encounter any obstacles in achieving the project goals?

Sarah: Well we’re not finished with the project yet. The greatest achievement, you know I’m very, very proud of how we work with managed care organization in Minnesota and how managed care organization work with one another to benefit kids with special health needs and many other projects, I think we’re uniquely situated in this state in that our health plans are non-profit, so it makes some of the competitive barriers non-existent or probably less than other states, so our partnerships are something I’m very proud of. But when we initially came up with the idea of identifying children with special health needs and managed care plans, the managed care plans had a very big part in developing the rest of the project by asking the questions from their perspective--why do they want to identify kids with special health needs. And so we looked and from their perspective it’s a quality of care issue that we can’t just have an academic exercise to see if we want, if we can pick out who has special health needs. It has to serve some purpose in the end. And, again, they’re priorities for quality of care. One of the frustrations and obstacles we had that, health plans don’t necessarily control what goes on at that clinic level, they have a lot less control than I originally thought. Where I thought, "Gee, you just write in your contract with your local provider that they have to implement the screening tool." Well that’s just not how it works. Particularly with the Medicaid plan, they need their providers desperately and every time they put in a different requirement in the contract, they run the risk of having providers not want to be I the network, so that was quite an eye-opener for me. It’s been an absolute pleasure in working with, not only the health plans, but the physicians’ group--the Minnesota chapter of the AAP--has been very, very involved with this project, and the enthusiasm with which people have come to the table, less on the identification piece and more on how we can support physicians I have to say. So.

Faye: Okay and how does your project address the Healthy People 2010 goal that all children with special healthcare needs will have adequate insurance?

Sarah: We didn’t strive to specifically address that, but some of the things that we have found as barriers, as we have interviewed physicians, are issues of reimbursement. Kids with special health needs deserve more time in a clinical setting than other children. Not only they need it and they deserve it to have their needs met and the reimbursement issue has been certainly surfaced as one of those.

Faye: And do you have some recommendations for the Maternal and Child Health Bureau from your project about assuring adequate insurance for children with special healthcare needs?

Sarah: I think the CHIP program probably offers a lot of hope, I think, for our families in Minnesota. And I wish there were maybe a greater focus on wraparound services within that program. Minnesota has a real high rate of insurance for children. We, most of our children, have some sort of insurance whether it’s private or public, but benefits packages can’t necessarily meet all the needs that families would identify for their children. And if we could use it as a wraparound package--so the issue of under insurance becomes a very big one here.

Faye: Well, I appreciate your bringing up this issue. And what are your plans for continuing the work that you’ve been doing related to children with special healthcare needs and managed care?

Sarah: We don’t have anything specifically laid out. I had a meeting with my teams this morning, where do we go from here? We all want to, I think, continue to support primary care providers, I think, is probably the direction both the plans will be going in. Certainly the state will be going in as they try to meet the needs of the kids with special health needs and probably focus less as Betsy has said that the tools we started out with, or that existed when we started out, have been much further refined and we may use different tools for identifying kids with special health needs in the future, but families and physicians in medical homes still need to be supported somehow. So I think that’s the focus that we’ll take from, after this project is finished.

Faye: Okay, well thank you very much for sharing about your project with us. Now we’re going to move on to discussing some of the specific issues related to the identification, that’s the major focus of all three of your projects. So I have a few questions about the managed care plans where your collaborative partner’s related to identification. And, you know, I’d like to hear from each of you a little bit about your experiences. First thing we’re looking at is, how did the managed care plans that you worked with define children with special healthcare needs?

John: Well, one of the fun parts about this project is that the managed care plans had not defined these children. And mostly they were looking for children who had high expenditures, very high expenditures, and were missing an awful lot. And it was, actually the plans and the physicians, really gained a lot by being able to be able to identify children with special needs and begin to get a profile of what their practices actually are. And there was a liaison that developed by people, the medical director at the top and the physicians below, when they began to really see how the care for these children were distributed very unevenly throughout the practice plan. And this began to stimulate people to try to organize some of their own practices along the lines of identifying these children early and making sure that they got good care management. And I think in the long run this issue about reimbursement of physicians is very, very critical. The amount of time that it take to care of a child with complex needs is much, much more than it is for a child who is basically healthy and is just coming in for a Well Baby check.

Betsy: In terms of the managed care plans that we worked with here in Florida, we had the same experience that John had. None of them really had a definition for children with special healthcare needs but they all had strategies that they used to identify these children. And the common strategies were looking for children that were very high cost in a given year. Some of them also looked for children with particular diagnoses that they felt were likely to lead to high cost problems if the children weren’t put into disease management or care coordination programs. And then, some of the managed care plans also routinely reviewed cases for any child that had an in-patient stay, to see if that child might possibly have a special healthcare need. But they didn’t have a particular definition that they used.

Faye: I see. And what about in Minnesota?

Sarah: We have been--Healthy Partners had been involved with a project with us previously--previous to this one, where they too used cost kinds of parameters in their attempts to identify kids with special health needs or specific diagnoses like cystic fibrosis, the more expensive, hemophilia, those kinds of things, the more expensive diagnoses. For this project, the only thing that the health plans really didn’t want to include in their definitions was the at-risk children, you know the MCHB definition or children with or at-risk of having a special health need. We decided that the at-risk group of kids were just--tools hadn’t been identified yet, developed yet to operationalize that definition. So I think what happened with our project is that we went with the definitions that could be operationalized so there were two tools that existed that they just elected and went with those and tried to implement them.

Faye: Now I’d like to hear from each of you about the process that the health plan used to develop the definition once you started collaborating with them and who was involved in, specifically we would like to know how the providers involved, how were the families involved?

Betsy: Here in Florida, we had a quarterly meetings with the state agencies and the health plan representatives that were with the different managed care companies that were working with either Title XXI or Medicaid or Title V and we reviewed the findings that we had obtained in terms of how many children we were identifying, how expensive was their healthcare, how much healthcare were they using and we also shared the same information with families that came to the meetings and some physician representatives were also included in this group. And so we worked back and forth with these various interest groups and showed our findings and had received feedback from them and then modified our approaches based on that feedback.

Faye: Okay and what about in Minnesota?

Sarah: Well, we had two work groups that went with this project. One was sort of dubbed the "Medical Homeward Group" and one was the "Definitions For Group" and the health plans were involved in both of those. But for the Definitions Group, we had the health plans, we had policy individuals from the University of Minnesota who do a lot of work with children with special health needs, we had programmers involved in the work groups, the health economists at the state Health Department who was using the risk adjustment work that Rich *Kronick did. The gentleman from Medicaid who was both policy and research and working with their pilot project for people with disabilities and it was a very, very interesting group because we had the health plans getting lots and lots of input from experts in the area of children with special health needs. It’s interesting to watch the dynamics of policy people, they’re sort of the techies and the technical people would like to come in, say what they knew and walk out. But finally the health plans just had to, you know, take definitions that made sense to them and tools that they thought that they could successfully implement in their plans.

Faye: Okay, now do you think that the definitions that were the result of your collaborative work captured the population that the Maternal Child Health Bureau definition of children with special healthcare needs, which as we know is quite comprehensive, really intended?

John: Yes I think that it does. The group that is most difficult to measure are the children who are at risk. And if you define that at risk relatively narrowly, children that are premature or who have been abused or in severe accidents, I think you can identify it. It’s the children that are at risk from a much, much more subtle aspect from socioeconomic aspects. That group I think is very, very difficult to define. The other area that I’ve, that at least I’ve become aware of, is I don’t think that there’s any one tool that does a perfect job of identifying these children and the best way to identify them is to use a combination of some of the primary data collection tools that have been used and an administrative tool to provide you severity and more in depth information in the healthcare plan. To use these things together I think you can get a very powerful system for identifying these children. And I think that the one thing that has come out of all of this project is that you really can identify these children and you can give some estimate of their percentage in the population and their healthcare needs and that’s a giant step forward to the 2010 goals.

Sarah: What we found in Minnesota, absolutely John, that they certainly can be identified and the tools do that and then presented with the actual clinicians who are working with, presented that with the opportunity to say, "Which kids do you want to know about that show up at your door?" It’s a much, much narrower group than the tools would identify. I mean certainly they’re a sub-group, but when physicians are talking about scheduling extra time or needing to know when the kiddo comes in the office that, you know, this problem always needs to be addressed. It was interesting that it’s a much tighter definition from their perspective.

Betsy: We found that in Florida that the health plans really predominantly wanted to use their administrative data or their claims and encounter data to identify children with special needs and that’s gets back to the issue of their preference in terms of looking for high-cost children or children with certain diagnoses. They were concerned in terms of using broader-based survey approaches. So to the extent that the Maternal and Child Health Bureau definition reflects the fact that they--children with special needs are those who use or require health and related services of a type or amount not usually required by other children, then the health plans in Florida, I think, capture those kids because they are looking for kids that do use a lot of healthcare services and do have certain diagnoses. To the extent that the health plans feel that they really can’t look for the high-risk population, they feel that it’s too broad of a capture for them and to the extent that they don’t want to identify children that have more mild chronic conditions, that I think that they’re not really meeting the overall MCHB definition. So it’s a mixed bag in terms of the kinds of kids that they’re getting, with the focus being on high cost kids.

Faye: And do any of you feel that the health plans had any other reasons or motivations for wanting to identify children with special healthcare needs other than the ones you’ve already mentioned?

Betsy: Well in Florida, I know one of the primary motivations is that there’s a very good working relationship between the health plans and the Title V program. And the Title V program is very willing to take referrals from these health plans, work closely with them to make sure that the children are successfully transferred to Title V, if they’re medically eligible, and so for the health plans there was that motivation in part to be sure the children were in the correct program with the correct service providers. And I think also in part to ensure that they weren’t necessarily bearing more risk than they wanted to bear by having a severely ill child.

John: I would second that. I think one of the goals in the care management process in identifying these children are to make sure that they’re getting all of the services that are available to them through Title V, through the county, through the school system. So the taking care of children with special needs is not just simply the responsibility of the health plan or any other one which could be silos within your healthcare system, but to cut across all and to make sure that child is getting all the services that that child is eligible for.

Sarah: I think in Minnesota, I don’t know that there was any motivation beyond than what we already spoke about and a commitment to ensuring quality care for this particular population and supporting the primary care practitioners who care for them.

Faye: And I know that confidentiality is also a major concern in our nation as a whole, but particularly within the healthcare system, so how did the health plans that each of you collaborated with maintain the confidentiality of their patients?

John: Well within the health plan it’s not that difficult because these are patients that go to these individual practitioners and you need to know who the patient is to be able to provide the care management. Where it becomes difficult is when you try to cross data with other system or combine it with school systems or mental health conditions. My ideal situation would be that you would have all of the healthcare information on a child and would know where they were receiving their care and be able to evaluate that. But I think that’s extraordinarily difficult to do in this current environment where you have to assure confidentiality and also if you do that you have to really--the system has to be trusted by the families and the children that that data won’t be abused.

Betsy: And in Florida in terms of referring the children to Title V, the health plans did speak to the families and tell them that their child might have a special healthcare need that made them eligible for specialized programs and providers and they received permission from the families before they made the referral. So that was their focus on maintaining confidentiality.

Sarah: In Minnesota our project, all the data stayed within the plan that generated it. The Title V program didn’t look at any of the identifying information or anything on the patients who were identified by the tools. That was just within the plans so there weren’t really any confidentiality kinds of considerations that for this particular project needed to be made. Now, one thought I have had on that is, if a child is identified as having a special health need and the parent is aware of that, then perhaps the parent can share that with the other providers or whatever, if we’re going to go for enhanced reimbursement, for instance, for care providers that there isn’t any central database or kids with special health needs other than the parent knows and can let the physician know. In one of the surveys we did, however, I asked families how they felt about having their child identified within a system as having a special health need, and the parents didn’t really have much trouble with it as long as it benefited their child.

Faye: I see now. Did any of you encounter this that concerns about confidentiality held some families back from participating in identification?

Betsy: I think for us, I think that that was definitely and issue and I can cite a couple of different examples. The first example is that we did receive some phone calls from families wanting to confirm that we were a legitimate group working with the state to screen their children, actually requested letters from us. These often were families that were going through divorces or other difficult circumstances and they were concerned that someone was inappropriately trying to get information about the health status of their child. The second example that I can give is that when we interviewed families whose children were already enrolled in Title V, so we already knew that they were screened for medical eligibility, these were children with special healthcare needs. When we administered some of the survey screening tools that identified children with special needs, only 77 percent of those families reported that their child had a special need. And we knew they all had to because they were all in Title V. And one of the things that we suspect may have been an issue is perhaps concern about confidentiality and releasing specific information about the child’s health status.

John: We found essentially the same thing, that the families that were asked directly in primary data collection, even though this was kept assured confidentiality, that if the child had a significant mental health problem they might not say that partly that this could be also a not understanding that their child had a significant mental health condition. But on the other hand, when we were analyzing the data and outside of the plan and this was all done with strictest confidentiality.

Faye: Well you know I’m glad that we’ve been able to air some of these concerns and certainly I know for families whose children have special needs and they’re covered by employment-based health insurance, the family often feels that they are in a precarious position. So that’s something we need to keep an eye on. What do you think are constraints to identifying children with special health car needs, other than the ones we’ve already mentioned?

John: Well I think the two ends of this are, number one are the children that the families that don’t interact with the healthcare system much or at all, and if that is coupled with the family’s reluctance or lack of knowledge to report that their own child has a special need, you’re going to miss a significant number of children and it’s going to be very, very difficult to identify this group and I think the only way I know is to be sure to work with providers and families and create a healthcare system that is trusted and a system where there will efforts to be sure that families have adequate access to it. But I’m concerned that if there are barriers that are developed and families don’t interact or if our public health system is not well supported, that it’s going to be very difficult, except in a very broad sense, to know who has special needs, certainly on an individual basis. It’s going to be very, very difficult to find that child and make sure that child gets the appropriate care.

Faye: I see.

Sarah: I think one of the problems currently, actually with the tools that we tested, it’s not realistic at this point to think the health plans that we work with would implement these tools without some financial support to do that. Right now we, you know, we provided financial support through the grant, but identification methods are expensive. At least the ones we test and certainly they’ve been refined so that the sort of a cost-benefit analysis or something like that from the health plan perspective and is there a way to support primary care practitioners and the families and their plans that is not burdensome for the health plan and we don’t feel like we’ve hit upon that quite yet. It’s probably coming, but it’s not there yet.

Betsy: And I concur with that, I think in Florida on of the major constraints really has been concern on the part of the health plans about the use of some of the survey-based approaches to identify children with special needs, concern about the fact that they may be expensive to collect the data and the characteristics of the children that are identified. And then I think the other constraint is the health plans also realize that identifying children is really an ongoing process and it can’t just be done, say perhaps in enrollment, but there need to be some periodic checks throughout the child’s enrollment in the health plan and that they are worried about the costs of reassessing children.

Faye: Okay. Now, based upon your experiences in the past four years, how interested do you think the managed care plans of any type are in identifying children with special healthcare needs and do you feel that they need incentives to do this and if so, what kind of incentives?

John: Well I can only speak for our health plan and I think that they really feel that they would like to be able to identify these children if nothing more to be able to have a handle or a management strategies, if you would call it, on the children that have a high potential of utilizing the healthcare services. The plan that we’re working for has a really genuine commitment to providing the best care possible. It still is an added expense and unless the plan feels that it’s going to be able to realize savings by an improved management system, it’s going to be very difficult to incorporate these mechanisms of identification just for the sake of identifying these children.

Betsy: And I would say that that’s the experience in Florida too. I think the health plans are very interested, certainly for the children that qualify for Title V, they want to be sure those children receive the appropriate care. For other types of children that have special needs, but aren’t necessarily Title V eligible, the plans are concerned about having appropriate resources to care for those children and having a goal for their identification process.

Sarah: I’d say the Minnesota experience is similar to what John is saying and Betsy too.

Faye: And you know now we’re moving on to our final question in the webcast. What do each of you think the Maternal and Child Health Bureau can do to educate the managed care plans about the importance of identifying children with special healthcare needs?

John: Well, I think that there has been a lot of education that has been going on up to this point. I would say, about five or six years ago, a lot of plans would want to know who are these children with special needs. I don’t think it’s now much of a question of who they are, I think the next step is, certainly at the plan level, in that it is not only good human sense to manage children well that have chronic illnesses, but it is in the best interest of that care plan. I think that what people are realizing now is that even though the children with special needs maybe represent somewhere between 10 to 20 percent of the population, that this group of children consumes probably well over 50 percent of the plan’s resources. And it really is important if you have that group of children that are that important from a financial standpoint, it’s really important to know who they are, what kind of care are they receiving, how can we do a better job with them. It’s not just a small percentage of children that have minimal significance within the healthcare market. The other thing I feel about it, is that we’re going into a period of healthcare inflation again, unfortunately. And I don’t really think that much of that inflation is being caused by healthy people, but it’s by individuals that have long-term illnesses and the only way that you can get a hold of these trends is to know what’s happening within this population and to try to come up with some strategies that give them both care and also doing it in the most inexpensive way.

Betsy: You know I think looking at what MCHB can do to work with managed care isn’t asking necessarily the right question. Most of the children in our state, while they’re in managed care plans, they’re employer-based plans and they do not fall under state kind of HMO rules, they’re under ERISA, which means, you know, in self-insured business are taking the risk of the healthcare for these kids. So I think we also need to expand beyond managed care and look at employers and how can we support employers to incorporate strategies that managed care for kids with special health needs and to require that, demand that of that insurance products they’re buying.

Faye: That’s a good point. Anything else? Well, I think you’ve all shared with us some very important information and insights based upon your projects. You’re really doing some very important work to help children with special healthcare needs in our country. I want to thank you for logging on to our webcast production on children with special healthcare needs and managed care. We’re really interested in your comments and questions about the webcast and we invite you to contact the project officer, Lynda Honberg at lhonberg@hrsa.gov, that’s 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 broadcast on children with special healthcare needs and managed care. Please note that once each webcast 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 anytime day or night. Thank you for joining us.