Promising and Proven Strategies for State MCH Partnerships with Academic Colleagues

Susan Panny: Okay. I work for the Maryland Department of Health and Mental Hygiene. Next. And the Children's Medical Services program there was our children with special health care needs program. And it had remained largely unchanged since the last redesign in 1986. However, during the late '80s and 1990s, there were dramatic changes in the health care delivery environment and the health care delivery services system, serving children with special needs. There were the Medicaid expansions, there was the development of the state children's health insurance programs; there was the increasing trend to managed care. And in 1997, indeed, Maryland Medicaid went over to managed care. And policy for some time at the national level had been urging states to move from programs which were simple, direct services, purchase of care, for low-income children with special needs to the kinds of programs that orchestrate and assure the entire service system for all children with special health care needs. Next. So in 1997 the CMS Program, Children's Medical Services Program, initiated an intensive program review and strategic planning process to improve its effectiveness, its efficiency, and its appropriateness to the new health care environment. And we asked our neighbors across town at the Women's and Children's Health Policy Center at Hopkins for assistance in designing and implementing the initiative. The process that they came up with was to do an academic review and to produce briefing papers, okay. And then a statewide advisory committee was convened, and that had all the partners who really participate in caring for children with special needs in our state. And they examined the current program leadership, the current program budget, its organization, its functions, its linkages both at the local and the state level. And in addition, they conducted key informant interviews with our local health departments, with our pediatrician population, and with parents, and they did focus groups. And, next. This was our advisory committee. When I say it was really a very broad advisory committee, it was a very broad advisory committee. It included program people, it included the people in the administration, the parent administration for that program, it included the deputy secretary for health from our state. It included local health departments, representatives of the Mental Hygiene Administration, the Medical Assistance Administration, and the Governor's Office for the Disabled, and the Developmental Disabilities Administration. And one important thing to know is that the way the department is organized, all the funding and the expertise to deal with primary mental health issues and also developmental disabilities is in entirely different administrations from where the Children with Special Health Care Needs Program is. In addition to that we had a lot of folks that came from our sister-state agency, the Maryland Department of Education, all the Special Ed people, the infants and toddlers people, and the people in disability determination in the Department of Education. We also had some membership from MCHB at HRSA, a lot of parents, representatives from the academic medical centers from academics specialists and some specialists, and from community-based specialists from primary care pediatricians, from our local chapter of the AAP for the Center for Health Program Development and Management, which is a university program also, but at the University of Maryland Baltimore County. It's the number-crunching unit for Medicaid, so they have all the Medicaid data; Advocates for children and youth, and then we had both the Insurance Commissioner and representatives from the managed care organizations that we're going to be working with in the new Medicaid Managed Care. Next. So the process continued. The advisory committee deliberated on the strengths and weaknesses of the current program in light of the briefing paper and individual experiences. There was a full day advisory committee retreat that was organized. And then there was an internal steering committee, largely internal department folks, who then looked over all of that information and made proposals back to the advisory committee. So what were the benefits to us at the program level? As Holly pointed out, there's pairing of faculty with academic and practice expertise, and they are paired with us, the in-the-trenches persons. And then we were able to draw on the university for literature review, for data analysis. I'm sorry; I don't know about you, but program staff in my place, we just do not have the time for extensive literature review and extensive number crunching. We were able, also, to draw on the university for logistics. It is horrendous to go through the personnel and the procurement system in order to get somebody to do some focus groups for you and actually get some refreshments, a room to have the focus groups, I mean things like that. They could drive you berserk. And it was really wonderful to have the university, which has somewhat more reasonable rules for that kind of thing to do that kind of thing for us. And then as Holly pointed out, the whole validation idea. We knew pretty much what we wanted to do, and nobody was listening to a word we said. But having our academic partners serve as objective third parties who produced a detailed reference document that we could actually show people, okay, and they were academics so they must know, okay. That got the higher ups to listen a little bit more to what came out of this evaluation, and to pay attention to our plans. One of the most dramatic examples of this is that our state people were thinking that with all these expansions of programs that pay for care, we really didn't need to have any direct care or any gap-filling stuff at all in this program. And I think we all felt that that was really the pendulum going way too far in the other direction, even though there are states that have done that, we felt that there really were substantial populations not eligible for any of those programs in Maryland, including a large undocumented population. And then there were lots of services that were medically necessary for our population that just simply are not covered by the traditional payers, And so we felt we did have a role in gap-filling. And one of the nice things about it was that our academic colleagues thought so too, and they said well, you know, this pyramid that we all know so well is just fine for general MCH but, in fact, the direct-care part, the gap-filling part has to be a little bit bigger than it is for the general MCH population if you're going to be dealing with a population of kids with special needs. So we hope that there were benefits as well to the center. Yes, there's plenty of material that was gathered for a case studies, for classes. The data that was collected and also the methodology of collecting the data made lovely epidemiological exercises, which used to drive me crazy when I was in school, but anyway, are very useful in teaching. And they were able to expose their students to program and policy makers and to some of the issues and the aberrational issues that the people in the trenches face. So I hope it enhanced their experience and that they learned something from it as well. We learned a lot from it. Next. The recommendations that came out of this, I thought you might like to see what they were, and what this program looks like now. You have to remember that this was primarily a program that spent $3 Million on purchase of care before 1997, and it's a very different animal now. So the their recommendations were to become more than just a gap-filling direct-services program; become the recognized central agency in promoting the welfare of all kids with special needs; become the recognized locus for orchestrating the system of services; maintain and improve the ability, the availability, and the access to sub-specialty care for all children in all areas of our state; become the locus of authority for defining quality of care; and convene a broad-based advisory council to help us in this process. More detailed recommendations bring families into all aspects of the program. We had kind of token families before, but we really did not have families built in anything like what we do now. Work with your sensors of excellence; those are you academic medical centers, to ensure the continued viability of state‑of‑the‑art sub-specialty care. And we're lucky in Maryland, we have a very good system, and it was getting really pinched economically when we went over to Medicaid managed care, and, in fact, with the whole trend to managed care in the entire health care delivery system. Promote partnerships with local health departments, other state agencies, academic medical centers, community providers to assure the availability of services statewide. Use regional structures and consortia where they are appropriate and available. Above all, make ourselves more visible so that people know that we are the central agency dealing with children with special health care needs. Do something to assure that families can find out about available services. Best services in the world don't do you any good if families don't know about them and can't find. And continue to pay for care for uninsured low‑income kids. Continue to pay for necessary services not covered by insurers. Expand enabling services, particularly day and respite care, and transportation. And obtain additional staff with expertise in data epidemiology, health care economics, program development, and communications. What do you think we didn't do of all these things? Number, at the bottom. We did not do that; we've lost over half our staff. Okay. So we now have kind of a real pyramid.

Unidentified Speaker: Sorry.

Unidentified Speaker: No, not all.

Unidentified Speaker: That's all right?

Unidentified Speaker: That's okay.

Unidentified Speaker: Okay.

Unidentified Speaker: All right, well, no, go back.

Unidentified Speaker: No, I can't do it though. Wait a minute. I'm teasing.

Unidentified Speaker: Okay, previous. Okay. The Children's Medical Services Unit got this information pretty much in 1998 and we're already working very hard to become more than just a fee-for-service program. The brought parents into the system by contracting with Parents Place, which is our family-voices group. They set up a system of regional parent representatives. They hired a parent of a child with special needs as part of our professional staff. They began a regional resource development initiative. We have some parent resource centers at various places around the state and at some special facilities like the school for the deaf and the Speech and Hearing Association. We worked on transportation, coordinating that, especially in southern Maryland between the three counties down there who couldn't get it together. Medical daycare: we continue to support the two medical daycare centers that we supported for a number of years for medically fragile kids who couldn't go to regular daycare. A respite-care initiative was started. They worked on improving access to information about services. We established a liaison function at each of our Centers of Excellence. We've produced regional directories and specialty directories of services. Set up some service data paces. And got a couple of Web sites up and running in various places. And they tried to enhance the partnership with local health departments and the Centers of Excellence. In 2000, because of a large reorganization in the department, Children's Medical Services was merged with my unit, which was Genetics, okay. And we're now called Genetics and Children with Special Health care Needs. And what Genetics did was it brought the population-based services for children with special health care needs into the same unit as the direct services for those same children. So we had newborn screening, infant hearing screening, birth defects surveillance, the long-term case management programs for the kids with metabolic diseases and sickle-cell disease; Out Genetics Centers, our Sickle-cell Disease Centers, our Hemophilia Centers, and their outreach clinics; and that all came together. So we began to look much more like the pyramid. Next. Okay. The population-based functions and the core public health functions are delivered by the core unit. They also administer Children's Medical Services, the fee-for-service component, but everything else is administered through a partnership of various different organizations, primarily academic medical centers, local health departments, and voluntary organizations. Next. So this was Children's Medical Services; what is it like now? It's still the fee-for-service program, but it's only a small part of a large program. It still serves the same type of population. It's not an entitlement program; services have to be preauthorized. Next. This is what our population looks like now: 217 patients in FY03. Normal sex distribution. About 35 percent of them are undocumented kids, about 40 percent citizens. The age distribution, we have very few tiny kids and very few older children; most of them are in the preschool and the school-age periods. About 13 percent of the kids who apply, we were able to find them appropriate services and appropriate means of paying for the services with some other agency. And the average expenditure is a little bit over $2,000. Next. So how do the two programs compare? The program that CMS was in 1997 and in 2003, you can see that the budget is way down; most of that money's been redirected into other kinds of programs for kids with special needs. And the share of the budget of the program for children with special health care needs, that is direct services down from about 85 percent to about 11 percent. The cost for child has gone up. The number of clinics that were strictly CMS clinics has gone down. And then the number of children receiving direct services has really gone down very dramatically. The age distribution has really not changed. I think that in the interest of time, I don't want to go through too much more. I'll tell you a little bit more about what the program looks like and then show you our pyramid; and anybody who wants to see what things are in which levels of the pyramid, those slides are at the end for you to look at if you are interested. So we provide specialty care through local health department and local community hospital specialty clinics, and case management's also provided through our local health departments through grants called Unified Grant Awards. We provide infrastructure support for the specialty clinics at the Centers of Excellence. We support the Centers of Excellence to provide outreach clinics around the state. Next. The blue ones are the ones that came from Genetics and the red ones are the ones that are residual Children's with Special Health care Needs clinics. But you can see we have clinics pretty much all over the state. Next. We've brought the birth-defects program along. We've brought, next, the bloodspot newborn screening program along. We've brought the infant-hearing screening program along. And we've brought along the long-term disease management programs for metabolic disease and for children with special health care needs. Next. Day and respite care, we continue to support, as we said, our medical daycare programs, and the respite care projects provide primarily camperships and in-community respite care; we have our own PKU and sickle-cell disease camps; we provide camperships and staff support to other specialty camps. Fifteen local health departments have respite-care projects that can be respite hours. It can be a drop-off service; it can be whatever meets the needs of the local population. Next. We developed a children's resource line, and provide infrastructure support for Parents Place and the regional parent representatives. We developed resource database and the liaison function at the Centers of Excellence. All of these things have to do with resource development and informational services so families can find out what is available and get some help in navigating this system. Okay. We do, of course, continue to work with the early intervention programs. Next. Our big items in the budget now is not direct care. Big items in the budget are assistance to the local health departments, to the Centers of Excellence, for genetics services, and for the parent‑infant centers. Next. And so this is what our pyramid looks like now. It's all full of stuff at the other levels, not just the tip. And if you want to look at what's in all of those different levels of the pyramid, they're in the back, and how many kids we serve in each one of them, that's all in the back there. We now serve probably a good, in terms of some service that we really can put our finger on and count; we certainly serve over a quarter of all the children with special health care needs in the state, not just the low-income ones, which was our situation before. Thank you.