Susan: Certainly. Thank you, Faye. My name is Susan Epstein and I’m the executive director of a regional health policy and planning organization called New England SERVE. We are based in Boston, Massachusetts, and established in 1983. And we work with the regional network of the six New England state Departments of Public Health and their Maternal Child Health Title V program. The Shared Responsibilities Project that I’ll be talking about has been--really been about developing a model for promoting and building a partnership approach to improving the quality of managed care for children with special healthcare needs. This project really derived directly from earlier work that we did at New England SERVE, which included a regional needs assessment in New England and led to the development of a model for quality improvement, which included a set of measures for managed care. And the Shared Responsibilities Project was an opportunity to implement this model in a very up close and personal way inside one health plan, and that health plan is Neighborhood Health Plan. I’m delighted to have Pam Gossman with us from NHP today. And she will be able to give you much more specifics from the health plan perspective. The Shared Responsibilities Project, as I mentioned, is really about building partnerships because we feel that the responsibility for both assessing and improving the quality of care for children with special healthcare needs is shared by a number of stakeholders--by families, by providers, by health plans, and by purchasers, and that children with special healthcare needs require services from multiple systems of care. Families and providers caring for this group of kids have a critical set of skills and expertise to bring to the whole quality improvement activity, and that therefore the model is really based on collaboration. The Shared Responsibilities Project has addressed building partnerships has addressed building partnerships on two levels, both on the health plan level in our work in related, in collaboration with Neighborhood Health plan and implementing a quality improvement model at the health plan level. And at the same time, it’s focused on building partnerships at the state level, where we’ve had the opportunity to build the Mass. Consortium for children with special healthcare needs, which brings together families of children with special healthcare need providers, state agencies, purchasers, health plans, and a range of advocates. And we’ve been able to address opportunities for collaboration and partnership at the health plan level for improving quality of care and then address certain issues which are clearly needed to be addressed across health plans and across purchasers. And we’ve had the opportunity to address those issues related to quality improvement within the consortium.

Faye: Well, thank you so much, Susan. Now we’d like to hear a little bit from Pam about the Neighborhood Health Plan.

Pamela: This is Pamela Gossman. I’m a clinical program specialist for our children with special healthcare needs here at the Neighborhood Health Plan in Boston. Neighborhood Health Plan is a 12-year-old Medicaid Managed Care organization that is statewide and has a network of primary care providers and community health centers. We have approximately 120,000 members who are part of our Mass. Health program. We were very fortunate to be involved in Susan’s Shared Responsibilities Project, and through this collaborative effort we have really begun taking the initiative to focus on children which make up over half of our Mass. Health membership, and we’ve started taking real steps to add pediatric case management and to address the needs of the children with special healthcare needs within our population. So we’re very fortunate to be moving forward with this.

Faye: Well, thank you. Now we are going to be hearing from Jennifer Jones Clark and Mary Oseroff from Providence Health Systems, introducing your project and giving us a little summary and background please. Jennifer?

Jennifer: Yes, my name is Jennifer Jones Clark. I’m with Providence Children’s Center and we have a project here that we have titled Measuring Outcomes and Children with Special Healthcare Needs, or otherwise known as MOCSHCN. And this particular grant is a two-site project that is set in Providence Children’s Center in Everett, Washington, and Providence Child Center in Portland, Oregon. Specifically our project is a demonstration project that has been focusing on establishing family and professional partnerships through advisory boards. We’ve also been documenting functional development in children and measuring their progress along that developmental line. We’ve also been measuring what we call the experience of care within health systems via the families that we’ve been working with, and also trying to capture the physician’s perspective of the issues and challenges in caring for children with special healthcare needs. The guidance of our advisory board has helped us focus a study measuring the functional outcomes using a functional assessment took called *Wefem, and we applied this tool at a six-month interval over a period of year for over 400 families. We followed that up also with the application of the Foundation for Accountability’s Children With Special Healthcare Needs survey, which was formerly known as The Living With Illness Survey Module, and we used this to evaluate the family’s healthcare experiences and also as a second level identifier for children with special healthcare needs. The data from these tools have provided us with a better understanding of the issues that families with children with special healthcare needs struggle with in our healthcare system and has allowed us to document the potential in gains in children receiving physical therapy, occupational therapy, and speech therapy services. We’ve also been correlating these functional outcomes with the physician response and with the family’s experience of care to provide a broader perspective of the impact of children with special healthcare needs on the healthcare system and providers, as well as the impact of the system on children with special healthcare needs. We have been fortunate to work in two states and have been able to compare some of the differences between our states, and those differences not only in the managed care that’s provided to these families, but also in the Medicaid and some fee-for-service modules of health plans. And Mary *Oserhoff has joined us and can give you a brief overview on who she is.

Mary: Hi, I’m Mary Oseroff and I am the project specialist on this project, and I’ve been working with the families and administering a lot of the questionnaires we have and speaking with them about their children and their needs, and also I’ve been working on another aspect of our project, the physician survey and meeting with local physicians in the community. And we can talk about that a little bit later. Thank you.

Faye: Mary, I’d like to hear a little bit about how you developed the idea for your project and some of the collaborative partners, and why you decided to get involved.

Mary: Well this is a follow-up grant to another grant that was a three-year MCHB grant at the Children’s Center, and we are a children’s center serving the local community and one of the largest in our development centers in the state. And as the community center we’ve been--we’re developing partnerships within the community so, you know, developed the Advisory Board, and we have the physicians in managed care and other groups of people in the community to provide better services, so this--this project is more of an expansion of the original grant to the second state.

Faye: Okay. Now I’d like to hear from each of you how your respective projects have involved families to achieve your goals and objectives. Susan, could you start please?

Susan: Certainly. The shared responsibilities model at the health plan level includes a number of key elements. It’s a self-assessment model where a health plan is really looking at its own performance with respect to children with special healthcare needs. And the two key commentators on that performance really are families of children with special healthcare needs and providers. There is a family survey and a primary care provider survey that are used as data collection tools to give the health plan feedback about the experience of care. In addition, the key element of the model is an advisory group, which includes external partners to the health plan. And there were seven family advisors who played a very active role in this advisory group in designing these data collection tools, in interpreting the findings and in making recommendations to the health plan about the priorities for improvement. So I think families have played a very critical element in both designing the data collection plan at Neighborhood Health Plan and in interpreting those finding. And then of course the families who completed the survey, which were 542 families of children with special healthcare needs had the opportunity to give feedback back to the health plan about their experience or care. At the state level, in terms of the Mass Consortium for children with special healthcare needs, there’s a very active contingent of families of kids with special healthcare needs and family advocates who are active members of that consortium of about 40 active members of the Mass. Consortium ten are parents of children with special healthcare needs and family advocates.

Faye: Well that’s wonderful. And did your project also involve youths with special healthcare needs?

Susan: We did not have any direct participation of youths with special healthcare needs, but that might be something that--to be addressed in the future.

Faye: Well thank you. And Pamela.

Pamela: Yes. Bringing in the families on--as part of the advisory group on this initial project has continued to be an important part of our children with special healthcare needs initiative going forward. In the first year of the project, after we had the survey results and the recommendations from our Advisory Council, we maintained that advisory council as part of NHP to advise us on our activities in the first year of the project. And we did this be meeting periodically and then through regular updates that went out the family advisors. But also we consulted them on a one-on-one basis by telephone or by mail, to get their input on drafts of materials we were developing such as a job description for a parent consultant, or their recommendations about who should be part of the case management team. Also we have hired a parent consultant, and this is a person who has a child with special healthcare needs, and she is advising us on things that we should include in our program, she is developing a web site for us, and she is also now reaching out to individual families with children with special healthcare needs to offer supportive resources.

Faye: Oh, that sounds great. I’d like to hear now from Jennifer and Mary about how your project has involved families and whether youth have been involved.

Mary: Hi, this is Mary. We’ve involved families in a number of different ways I mean, we are mostly a research project. We have families on our advisory boards in both states, families who have special needs children. We have four of them on our board in Washington State and I think eight in Oregon. We, our staff, also have special needs children, and of course we have the respondents. We have 400 respondents to our surveys and who have participated in the *Wefem survey here at the Children’s Center. And that’s a very active survey and the parents are involved in answering the questions and learning from the responses, and also, our course, on the participants in the larger survey of Providence Health Plan. We’ve also been collaborating with Family Voices. We co-sponsored a four-state conference with Family Voices last year, and we are now working with the medical home teams locally. And so we’ve been very active with families in our projects. Most of our children are under ten years of age, although some children in the nursing center at the Providence Child Center in Portland are between 12 and 20 years old.

Faye: Oh, well thank you. So it sounds like both projects really have a lot of parent involvement. I’m happy to hear that. Now I’d like to hear from you about how the managed care plans that you’ve worked with in this initiative define quality.

Susan: I think perhaps I should ask Pam to speak for the Neighborhood Health Plan, I think the only thing I would say in introduction is that in forming our collaboration with NHP it was clear that this was a health plan that included in its goals the development of more responsive family centered systems of care, or they wouldn’t have been as interested in the kind of collaboration that we were proposing. So clearly, family centered aspects of care are a key component of quality.

Pamela: Yes Susan, this is Pam, and Susan’s correct. Family responsive and community-based care is an important part of our goal in providing services to our members. We want to make sure that there’s ready access to services that there’s a primary care basis, someone to coordinate that care, and we really focus on the preventative aspects of care as well.

Faye: And how about at Providence Health System. How do you define quality?

Jennifer: This is Jennifer. We had an interesting project at the beginning in terms of getting our managed care plans, we had multiple plans involved in the project, both within Washington State and Oregon, and what’s been so interesting is to see the difference in how the two states define quality. Providence Health Systems does have its own health plan, but only in Oregon. We don’t have one here in Washington anymore so we really had to rely on having good relationships with outside health plans to get to know them and understand what is important to them. And in terms of the managed care plans defining quality, we were in both states somewhat disappointed that there is little focus on defining quality, and maybe we were biased in thinking what we thought they should be defining as quality. However, we did find that most health plans between the two states are trying to look at the service delivered, and the service delivered specifically to children with special healthcare needs. But that in terms of defining quality few outcome measures were being applied, except in some diagnosis specific groups such as asthma or cardiac health. And when it comes to Washington state the health plans--most health plans here did choose to participate in the fact children with special health care needs survey or the old Living with Illness module, and that did give us a better picture of how many children with special care needs were being served by these health plans. However, they used the information more to compare themselves to our Medicaid--our Medicaid plan which is fee-for-service here for children with special healthcare needs, and instead of really looking at what kind of quality--well, I suppose this is a way of looking at quality, they really tried to compare their satisfaction scores to the Medicaid fee-for-service plans satisfaction scores. However most plans here in Washington State don’t go much farther than that in terms of defining quality for children with special healthcare needs.

Faye: I see. Now I’d like to hear from each of you about how the plans have assessed quality and monitored their performance for children with special healthcare needs. First, before your project started, and then secondly during the duration of the projects, what were they having in terms of measures to assess and monitor their performance? Susan?

Susan: I think it would be fair to say that before the shared responsibility project began at Neighborhood Health Plan that there was no specific activity in place to measure, or in any way assess or monitor the experience of care or their performance of care for children with special healthcare needs, largely because children with special healthcare needs were not identified within the plan. When we first began there were no strategies around the specific outreach for identification for this population, so that’s obviously the very first step is the ability to identify who the kids with special healthcare needs are within the plan before you can begin to monitor the quality of care. Now the health plan was participating through the state Medicaid program and collecting CAHPS data, and they were getting reports on the CAHPS surveys as family’s reports for care regarding children. So they had both child and adult reports of the CAHPS surveys, but they were not able to separate out who the children with special healthcare needs. And perhaps more importantly, the CAHPS survey didn’t target very specific components of care relevant to kids with special healthcare needs. The shared responsibilities model itself includes a set of quality measure imbedded in a family survey, and in a primary care provider survey. And by using those tools Neighborhood Health Plan was adopting those indicators of quality and in fact adapted an earlier version to reflect their own priorities within their health plan of issues they wanted to look at for this population. So as a result of the project they now have a set of quality measures specific to children with special healthcare needs, and most importantly have a set of strategies for identification of the population.

Faye: That’s great. Susan, before could we go on could you please share with us what is the CAHP survey?

Susan: The CAHPS survey is the Consumer Assessment of Health Plan Survey, C-A-H-P-S, which is a national model for collecting consumer’s experience of care that has been used to compare health plans. Its basic goal is to be able to compare one health plan to another, primarily for purchasers to collect information on health plan from the consumer’s point of view. It is the member satisfaction survey that the National Committee on Quality Assurance, NCQA, has adopted for the HEDIS Measure and also for certification through NCQA.

Faye: And what does NCQA Susan?

Susan: The National Committee for Quality Assurance, which is a group that does a variety of quality assurance initiatives for health plans around the country.

Faye: Oh thank you so much. And also to let our audience know that the materials organization, instruments, etcetera, that are being discussed will be found in the resource section of the web cast, with links so you can go and get additional information and take a look at some of the documents. So are speakers, have all contributed written information that will be found in the resource section for you to take a look at. Pamela, do you have some comments about assessment and monitoring of--

Pamela: I agree with Susan said, prior to her project, we had no specific measures for satisfaction or performance for children with special healthcare needs. We did have the traditional metrics on members for well visits and primary care visits and so forth, which covered children as well but nothing specific to children with special healthcare needs. Like Susan said, one of the key problems was identifying this population, so the first year of our initiative really focused on developing identification tools and defining who this population is. We developed an algorithm in conjunction with Susan’s group, and have since modified it using administrative data to try and identify this population. And we’ve also introduced a health needs screening with our welcome call that is made up of the living with illness screener questions. So we have made changes, first to identify the children. Specific outcome measures we have not done yet. What we do have is the satisfaction surveys and measures that Susan introduced as part of the shared responsibilities project.

Faye: Thanks Pam. I’d like to hear now from Jennifer and Mary on the same issues.

Jennifer: This is Jennifer. I’d to say that we’ve had very similar response from health plans within our project in terms of identification being the first step to measuring quality for children with special healthcare needs within their plans. I can’t say that we’ve gone much farther beyond that step. Again, in Washington State all of the health plans did choose to use the Living With Illness survey or now known as the Children With Special Healthcare Needs Survey, to identify children with special healthcare needs. And that was certainly a wonderful first step. And in Oregon the Providence Health Plan choose to use the same survey and to allow us to follow-up some of their families who were identified as having a child with special care needs using the *Wefem measurement tool which was our functional outcome of measurement tool. And so that was a wonderful step in getting a little closer to giving these health plans a picture of who the children with special healthcare needs are in their community and how they’re serving them. I have seen a moderate insurgence in case management happening within the health plans here in Washington State, where a child who has very high needs may have a specific case manager who we can go to, to coordinate care and to coordinate authorization and referrals, and that’s been very helpful, and I do feel like that’s in response to their recognizing how big their population is of children with special healthcare needs, and how effective the case management is. Also in participating with the Family Voices group, we have had access to the interviews that they conducted with managed care organizations, and found some of the similar issues in terms of specific measures that they were using. Quality measures are used frequently within managed care plans, however, most often--again for diagnostic specific groups, for example, a group of cerebral palsy children in a certain risk category or a high need category. What we--the conversations that we’ve engaged in with our health plans is to take it one step further to look at the general population of children with special healthcare needs, which most often you can look at 400 kids and have 150 to 200 different diagnoses which doesn’t really give them a rich data set to use their same mechanisms of measuring quality as they have with the larger diagnostic specific groups. So we certainly feel like managed care plans are anxious to get to know their children with special healthcare needs population better. I do think they’ve had a difficult time trying to figure out how to use the information now that they have identified populations within their plans.

Faye: Well thank you. That’s very, very interesting. Mary?

Mary: Jennifer speaks well. I don’t have anything much to add except that we’ve, as part of our data, we’ve been looking to identify like using the diagnosis and struggle with it, just like everyone else does. We have a population of about 400 children receiving care within our development centers and we probably have 600 to 700 different diagnosis for this population, so it’s really hard to get your hands around who the children are and what kind of care they’re going to need if you are trying to estimate what kinds of services that you need to provide to these children.

Faye: Okay. Now I’d like to ask each of you what impact do you feel that your project has had on the quality of care with children with special healthcare needs, Susan?

Susan: I think I’d have to say that probably we could not measure directly an improvement in the actual quality of care for children with special healthcare needs yet that’s changed as a result of the project. However, there are some really important organizational things that have changed that will lead, I think, to a very positive impact on the quality of care. The first is that the health plan has a focus on children, on the pediatric population for the very first time. They’ve appointed a medical director for pediatric populations. They’re developing a pediatric team, which includes pediatric case management, and member services, and there’s a whole focus on children and children with special healthcare needs that was not there before. In addition, the hiring of a parent consultant within the health plan really has positioned the health plan to begin to do more specialized outreach to families. And I think that will lead to very significant ongoing feedback about where the challenges are in the system of care. But I think in terms of actually measuring changes on the impact of the quality of care the children and families are receiving, that we’re at the very beginning stages of that long journey.

Faye: Okay. Pam.

Pamela: Yes, this project has had a significant impact on the way we provide care to children. Like Susan said, we aren’t at the point of measuring quality but the fact that there is significant awareness that there are children in our population is something new for this organization. We have two pediatric nurse case managers now and prior to this project there were no pediatric specialists. We have the medical director and the parent consultant. And also I think we’ve really realized the importance of getting input and feedback from both our families, or from family organizations involved in--with children with special healthcare needs, as well as with the providers who are providing the services. I think that’s been a critical part of this effort. And also it’s had a real systemic affect on our organization. I see a lot more interaction across departments in trying to solve some of the issues around this population, which gets transferred to the work we do with other populations as well. It’s a more coordinated effort.

Faye: I see. Well, now we’d like to hear from the West coast.

Jennifer: This is Jennifer and I’ll answer on behalf of the MOCSHCN Project. I’d have to say that our biggest impact on quality has been increasing the awareness for health plans and for our community partners about the differences between adult diagnoses and adult diagnosis-related care and the care that children need, and how the formula--there is no formula for children, and there is no formula for children with special healthcare needs. Meaning that if you are a health plan it really requires a unique benefit package for children with special healthcare needs, and you can’t rely on formulas that you’ve used for adult care. It’s also kind of illuminated the complexity of benefits. I’d have to say for Providence Health System, in specific, our billing department of all places has probably been the most illuminated and newly aware of how unique children with special healthcare needs are. And in terms of their benefit packages being fairly similar per child, yet the needs being dramatically different for each child. And last, but certainly not least, the impact that our projects have had on quality on care has been that the state, through learning about what we’ve learned through our project and some of the other projects going on in Washington State, Washington State has chosen to maintain its fee-for-service option through Medicaid, and I believe that that’s primarily because they recognize their high percentage of children with special healthcare needs and don’t have a better answer for these children’s benefits at the time so they want to be as generous with their answer as they can.

Faye: Well, that’s real important information for people to know about nationwide, and it sounds like all of your projects really are making a big difference. I’d like to move on now and ask each of you, based upon your experiences, what do you feel are the most effective strategies for ensuring consumer participation and quality assurance program. Susan?

Susan: Essential to the shared responsibilities model is a very strong commitment to consumer participation. I think one of the most important roles is to have families of children with special healthcare needs involved in the actual design of quality assurance systems and tools so that they can be appropriately address the priorities of families as they perceive their areas to care. So I think the active participation of families in the design and the review of surveys, and all kinds of materials that are related to quality improvement. I think similarly families can make a huge contribution to the actual interpretation of data and findings, and I think that that’s a role for families that have not necessarily been included in the past, so that we were able to bring families, providers, and health plan administrators together to look at what families said about the experience of care, what providers said about the experience of care and really help interpret those finding. So I would say in both the planning and design of initiatives and the interpretation of data and findings. And I guess I’d add the third category of choosing priorities for action when you get to the point of identifying what in a long range of shopping list of opportunities for improvement are really the top priorities. It seems to me that we need to have very strong roles for consumers to be involved in that area as well.

Faye: Well is sounds like you’re really proactive in this area. Pam?

Pamela: Yes, one thing over--since the beginning of the shared responsibilities project we’ve changed how we are using families. Their role, as Susan described it, was very important at the beginning of this project. Now we find that it’s much more effective for us to involve them at a programmatic level. As we’re developing a specific element of the program we want their input. If we’re drafting something we want their input. It was much more difficult to get the advisors together as a group when we were working on specific programs. Also having a parent consultant in-house has been helpful in helping us to design our programs and give us direction.

Faye: Thank you. Jennifer?

Jennifer: You know, I have a very short answer to this question and that is I feel like the health plans here in our two states are wanting to better explore satisfaction with their health plans, and are more willing to put out surveys and use other means to gather this satisfaction information, and I feel like they find that to be an effective strategy for consumer participation and not everyone wants to--everyone wants to give their input on how their feel their health plan is serving them. And I do believe that that is their strategy at this point in time for consumer participation.

Faye: I see. And Mary?

Mary: We’ve involved families in our program here and their input has been key in directing our grant studies. And we’ve been also encouraging families to participate as team members with their physicians, in gathering care, so I guess I see it more as a grassroots education of families.

Faye: Well I’m glad to hear that families and consumers are involved in so many different ways. Now, as we’re moving towards the end of the web cast I’d like to hear from each of you what you feel has been the single greatest achievement of each of your project, and also if you encountered any obstacles in achieving your goals. Susan?

Susan: I think I’d say that there are two achievements that I’d like to highlight. One is the potential impact of increasing the awareness within one major health plan in a state, about the importance of this population and the spill-over affect that that can create within a whole system of care larger than one particular health plan. And in Massachusetts we’ve seen the leadership at Neighborhood Health Plan be able to take a very important and visible leadership role in other arenas to make this population to get some increased attention. So I think the ability to increase awareness beyond one particular plan, and that comes really from leadership within the health plan. Two examples of that are that the state Medicaid program in 2001 chose as it’s clinical topic review, which is a particular targeted quality improvement data collection activity for all of their contracted HMOs, and that topic in 2001--one of the two topics was children with special healthcare needs. So there was a whole quality improvement initiative that affected all four Medicaid managed care plans on kids with special healthcare needs. And so I think that there’s this spillover affect that’s very important. The second probably is that we will now be in a position to promote the shared responsibilities model and get it out on a much broader level in a revised tool kit, which will be available this summer, and it’s called Identify, Collaborate and Improve, which are the three key elements of this model. And all of the tools that we’ve used in collaboration with Neighborhood Health Plan, as well as this set of best practices coming from health plans across the country who are beginning to look at this population will be made available to State Title V programs across the country, to health plans and to family leaders through the Family Voices network.

Faye: Well great. We will be looking forward to seeing this and using it, and we’ll have the link to each of your organizations is on the web site so people can contact you in the future for more information. Pam?

Pamela: I think for our managed care organization the single greatest achievement is the development, the establishment of a pediatric case management team, which includes our pediatric medical director, our two pediatric nurse case managers and our parent consultant, that we’ll be able to work as a team and to review cases, and to help the family coordinate care. I think that’s fairly significant for a managed care organization at this point.

Faye: And did you encounter any obstacles?

Pamela: I think the obstacles we’re going to encounter are moving forward now, now that we’ve established members of this team. There’s always a need for clarification of how the team works together and how roles fit together. The interdisciplinary approach, I think it’s always an issue. And also what’s the health plans role with the primary care practitioner in the community? When do we step in? What help can we give the primary care practitioner? And when do we let the primary care site take over a full responsibility for the member? How do we overlap our roles?

Faye: Oh thank you Pam. Now I’d like to hear from Jennifer and Mary about your achievements and obstacles.

Jennifer: Well we are very excited about some of the things that we have learned from our data collection and our use of the application of the surveys and the functional assessment tool that we used. Specifically we know so much more about children with special healthcare needs and how to attempt to measure outcomes for this hugely diverse population. We also got to reaffirm something we already felt all in our hearts and have seen in other data that younger children make greater gains when you are applying services, and that just speaks right back to the need for early intervention and to encourage health plans and schools and community partners to get involved with children at the youngest age possible. We’ve also learned that children with special healthcare needs and their families rate their healthcare experiences significantly lower than families who do not have a child with special healthcare needs, both in Medicaid and in commercial plans. And, some our obstacles that we’ve encountered include getting to--trying to find the tools to do what we set out to do; to find an appropriate functional outcome to which we eventually used the *Wefem, but did need to revise--actually come up with our own norms in order to compare that data and try to prove or try to measure the progress of children with special healthcare needs. And also in finding the tool for identifying children with special healthcare needs, as we all know was the first step for many healthcare plans, although we did use the fact children with special healthcare needs survey and we found it to be a very, very useful tool. When we applied the tool as it was at the time, using a 12-month marker that a child would have a condition that would last 12 months or greater to identify a child with special healthcare needs, when using that particular fact survey we found that it excluded 30 percent--36 percent of our children that came here to our Neurodevelopmental centers and we felt like that was not capturing the kids that we were truly studying and truly concerned about. And, last but not least, one of our obstacles was finding a good data analyst, somebody who understood the diversity of this data and could make some sense of it.

Faye: Well thanks. And Mary?

Mary: Well, as Jennifer said, we feel like we’ve had quite a few achievements because our population, I mean we started with the population at the Neurodevelopmental centers. These are children who’ve already received services so it was very striking to us that the living with illness survey that’s being used nationally as part of, I believe the CAHPS survey is not capturing 36 percent of the children that are already receiving services that we’ve identified as special needs children, so that was a problem for us. And we’re excited about the fact that we’ve actually demonstrated that younger children are making greater gains based on our population, and now we’re working with local physicians groups to develop new screening tools within their practice. We’re doing an early turn-around where we’re giving the physicians screening tools, getting feedback from them, and seeing what works best to actually identify the children in the physicians practices as the parents bring the children in for well child visits.

Faye: Well it sounds like all of you are really involved at the cutting edge with some very exciting things. You’ve made some really important discoveries and confirmation of things that have been known in the field but not quantified the way they should have been up to now. And you’re all doing a great job. We’re getting ready to finish now, so I’d like to hear from each of you, first of all about your plans for continuing the work you’ve been doing related to children with special healthcare needs and managed care. And secondly, if you have any recommendations for the Maternal Child Health Bureau in terms of promoting quality care for children with special healthcare needs in managed care. Susan?

Susan: Well I think the plans that we have at New England SERVE for continuing the work based on the shared responsibilities project are really to take the lessons learned from this collaboration, and through the dissemination of a revised tool kit, that I mentioned before, really begin to get the attention of health plans we hope around the county about the importance of identifying and beginning to plan for the children with special healthcare needs that are enrolled in commercial health plans and Medicaid health plans all over the country. And we hope to be able to do that through the sharing of this tool kit. In addition, the Mass. Consortium for children with special healthcare needs is a vehicle here in Massachusetts that has now been established which provides a forum for addressing some critical quality issues related to kids with special healthcare needs across a very diverse and rich set of expertise and stake holders, so I think the consortium will continue to play a very important role in promoting this work. In addition I guess your second question was around recommendations to the Maternal Child Health Bureau, and I think one thing that I would mention that I think is really important is that the new HEDIS Measure for children with special healthcare needs being promoted by NCQA is a very critical component. And I think there’s another opportunity within HEDIS and within NCQA to highlight this population, and that is to get support from NCQA to make this group, children with special healthcare needs, a targeted group for quality improvement at the health plans. Currently those groups have to be a particular diagnosis and when health plans go for accreditation they have to have work demonstrated in at least two targeted groups, and right now children with special healthcare needs, can’t really become one of those because it’s such a mix of diagnoses. So one potential avenue around advocacy is to promote the concept that this group of children with special healthcare needs has some shared needs related to quality improvement and that if health plans are looking across diagnoses at a population they could make an enormous difference very a important group of children and families.

Faye: Okay. And Pam?

Pamela: This year we’re going to continue to focus on developing more of our outreach and intervention strategies for this population, and specifically addressing the needs, that providers and families expressed in the surveys through the shared responsibilities projects. We have to look at ways that we can bring more mental health services to these children and their families make them more accessible. And one way we’re doing that is developing a telephonic and email ADHD consultation service. And the other thing is we have to continue with our case management project and see how we can work in an interdisciplinary way to provide more coordinated care for these families. As far as what NCHP can do, I would concur with Susan that NCQA can play a major role in making this population visible to other managed care organizations.

Faye: Thanks. Jennifer?

Mary: This is Mary. Jennifer has a meeting so she had to leave. We will be focusing on the services that the children receive. Managed care, as we’ve observed, is becoming less restrictive in the services recognizing this population has such multiple diagnoses, but we’ve observed that the consumer is paying more and the cost shifting translates to more options for the children but is costing the families more and they may not be able to accesses the services if the companies make them available with the co-payments and so on. So we’ve been addressing the cost issues with the managed care. And recommendations for NCHP based on our study of our--our in-depth study of our population is we see a need for improved screening tools, and we feel that the functional model works better with this population rather than a diagnosis model. And to expand benefits due to the complexity of the children’s needs and maximizing their functional options, and it requires intervention as early as possible, which can avoid more limited function for the children in the future. And as you improve services for children, this population of special needs children, you can focus on best practices which should benefit managed care as a whole and all the population.

The End