Sunday, October 19,2003

1:20-3:00 PM

Merle McPherson: Good afternoon. I’m Merle McPherson and I’m in charge of the Division of Services for Children with Special Healthcare Needs, and we’re busy searching for our slides up here. And welcome to the new members of the MCH family. I’ve spent many years with MCH and I really do think of it as a family. Where’s my button? Enter. Okay. Good. And I hope you feel that way too, increasingly. I actually came to the federal government from the state programs. I spent many years working in the state programs, and I came with the understanding that legislation that was written in 1935 might by the ‘80s be a little bit out of date and that maybe we needed to do some changing in the legislative responsibility. And so I’m going to talk about partnering to achieve community-based systems with services for children with special healthcare needs. How many in this audience have a direct responsibility for working in the children with special healthcare needs programs in the states? Great. And a number of the other people, I am sure, have administrative and management responsibility over those units. So we really have a 20-year history that was involved with development and demonstration, and what we’d like to talk about as partial implementation in every state off this community based systems of services. The original language, as many of you may know, and if you don’t, the history is worth knowing, it originally said that we would locate, diagnose, and treat crippled children, and the programs therefore were fairly clinically based and direct services for underserved children, and we ended up engaged in this moving it to a comprehensive strength-based family-centered approach. I had a marvelous time over the last few decades working in consensus development across the country with health professions, with families, with states, and communities. When I came I was fortunate that there was a Surgeon General very committed to these children, C. Everett Coop, and helped us develop surgeon general’s conferences to really talk about what needed to be done, what needed to be changed, and it resulted in revising the legislative mandate in 1989. So as you take on jobs, I want to remind you that nothing comes easy and this took us about 10 years to get to the legislative changes. And we changed the language, rather than saying, diagnose, treat cripple children, to provide and promote family centered and community based coordinated care, which essentially describes some of the service activities that you did and continue to do. But we also added the new statement that--and the wording was interesting. It’s always interesting what words mean in legislation. We did not say that we would manage and direct and control; we said that we would facilitate the development of community-based systems of services for children with special healthcare needs and their families. Also, through the healthy people goals for the nation that I’m sure you’re all familiar with, in both the 2000 and the 2010 goals there is a clear statement that the states will achieve community based systems of services for children and families. The other thing that happened as we move forward was the need to really define who the population of children were, and we developed a broad definition of children with special healthcare needs, moved away from the words cripple children, it really wasn’t a very acceptable term, and that was published in “Pediatric” in 1998. It is probably the broadest definition, involves about 13 percent of the population, and is simply interested in identifying those children who need health services over and above. We like to say that there is partial implementation in all of the states. We now have, as you hopefully know, a national survey on children with special healthcare needs, first ever done. Which, with data release, I guess it was in January when the Public Views data tapes were released. And the exciting thing about that survey is that there is also state specific data for you all to use, and performance measures for the states on six core outcomes are in place, so that we have refined the mandate for the community based systems of services by identifying six core performance measures at both the federal and the state level that we are working in collaboration and cooperation on. The other piece I wanted to share with you, which is really a very exciting piece for us is that this was incorporated as part of the President’s New Freedom Initiative. And the President’s New Freedom Initiative was an effort to bring, I guess it was 10 major departments together, health education obviously, but transportation, employment, justice, etcetera, and deliver a report which was called “Delivering on the Promises,” which really dealt with eliminating barriers so that all persons with disabilities had options to live in the community, and that was a result of a Supreme Court decision that required the federal government to do that. It is a very exciting report and a very broad based report. In that report it specifically charged HRSA, through the Maternal and Child Health Bureau, with developing and implementing a plan to achieve appropriate community based systems for children and youth with special needs and their families. So what we were doing over the last 20 years has really become part of the President’s Freedom Initiative, and I think encourages therefore to move forward. I’m going to share with you, fairly quickly, an understanding of where we’re at at the federal level. I have two branches, one is the Integrated Services Branch and the other is the Genetics Branch. The Integrated Services Branch is really the branch that assumes a real responsibility of working with the state around putting community based systems of services in place, and we do it around six major programs, the six performance measures. There is a federal and a state effort in each of those six areas. The first performance measures, which hopefully you know, is that families will partner with us and be satisfied with the care they receive. And what we have done just recently in the division is try to come up with some of the things that we feel we need to do over the next two years that will move this forward, that will move the President’s initiative forward. So that we really require at this point in time that family centered care and cultural confidence is addressed in all of the SPRANS grants that we give out. We also, through our Family Voices, in all of your states, and 100 percent of the Family-to-Family Health Information Centers that we are now funding, will deal with getting data on family needs consistent with the national survey. So that issue of evidence based in data as we work with families is very important. I don’t know whether you know this, but Medicaid has also just recently funded some Family to Family Health Information Centers in about six states, which is really very wonderful, and we’re working on an outreach plan in family and culture. Every child deserves a medical home. A statement from the Academy of Pediatrics, one of the core performance measures for the community systems. And by 2005 we would like that 75 percent of the state programs really have a plan for statewide implementation of Medical Home and many, many of your states are already well on their way to doing that. That Medical Home is the accepted standard of care for primary and specialty care providers, and that Medical Home really provides and integrates the six outcomes. We really feel if we can get children into good, stable, quality primary care with linkages to the specialties as needed, that the rest of those core measures, which includes early screening, coordination with the community services, will occur. So we will put a special emphasis on Medical Homes. We’re also doing a lot on evidence-based data there in terms of cost effectiveness for care coordination and improved outcomes associated with Medical Homes. And I hope over the next few days that you avail yourself of me and my staff to say what is it that you’ve really got out there? What’s the detail in terms of what’s the grants? How are we going to do this? Adequate financing: there is obviously two issues in terms of financing for children with special healthcare needs. The issue of uninsured, the recognition there is a gap group without any insurance. But importantly in this group, the issue of underinsured, that so many of us that have insurance, even in the private market, don’t have the benefit package that is needed, so that we are doing a considerable amount on utilization and cost profiles, which we hope to widely disseminate, and innovative risk modelings that are used to deal with that. Three health plans have question and answer initiatives and use various strategies to identify and strategize so that issue of identifying these children in health plans or in programs so that you can work with them; we have a lot of resource to help you with that. Considerable amount of work going on with the CPT coding modifications so that items of care within the primary care physicians, for example, (inaudible) could be answered. And at least five key employers have initiated steps to improve health and work support benefits. One of the ways of looking at it, that is through the benefits, and then seven states have decreased the uninsured or underinsured. The universal newborn screening: we have a lot of work going on in screening right now. The universal screening will move forward and what we’re really trying to do is to get as close to 100 percent of universal screening, get them into Medical Homes so that they are referred for good ongoing pediatric care, into the part C programs, and then link to data systems to facilitate that follow-up. The integrated community systems are probably the hardest part, but that effort of linking together at the community level, the work that we’re doing to help with the social service and the educational programs, are reflected in the work that we’re doing here. And I’m kind of moving quickly because I want some time. Adolescent transition, Healthy and Ready to Work, projects deliver--we have some in states, we believe they will provide replicable components for other states who need to make that transition to adult health and independence. At least half of the programs by 2005 hopefully will be involved with transition, and we also are working with the physician professional organizations around a policy statement for transfer to adult healthcare. The other thing I want to mention very quickly before I finish is the genetic services. Acknowledging that we have a genetic program in there, a lot of it is related to delivering genetic services and the newborn screening programs, but there is also efforts on the infrastructure, and increasingly this issue of translating science to practice, really trying to come to some understanding as the genome project evolves and research is out; what do we need to do to translate that down? Title XXVI of the Children’s Healthcare Act, if you don’t know the Children’s Healthcare Act, there’s a lot of pieces to it, this is one of them and we do have a new advisory counsel through it that we will be establishing, don’t have any appropriations yet, but that is there in the Child Health Act. And we have a national resource-screening center in genetics. And I think I will leave it at that and entertain any questions you would like. No questions. Okay. Thank you.