MCHB ALL GRANTEES MEETING

MCHB Divisions and Offices

October 4-7, 2004

MEREL MCPHERSON: Thanks everybody. Is Harry back there? It’s wonderful to be here with the MCH family; it’s really a very exciting meeting. I don’t think I’ve ever, in all of my years, had a meeting where all of the grantees and all of the states were together at one time, so it’s great. And I hope you realize that I am a (inaudible) to use the only 15-minute break you get in the day to give you my talk. So that I will try to move a little bit more quickly through the slides because I’m sure you’re looking forward to that. I also want to point out that we ended up with a title that says New Leaders Orientation, and there is a fairly full description in your packages than on the web about the activities we’re involved with. And I guess I would tell you that it’s directed towards the new leaders because they’re probably the only ones that need to hear or want to hear it because they’ve heard me give this spiel at least 100 times over the last 20 years. But I do want to talk about where we’re at with community systems of services. I’ve done less than my other partners in talking about the details of our division, but let me describe at least what we do.

In the hope that it would move forward--and acknowledging for--people are here for the first time that this really is an old story, that there has been a tremendous effort over the last 20 to 30 years to really change away from a medical model of care to what is called the family-centered, comprehensive based approach, and to build the service systems at that family provider community level that really do link our other sectors, not just health, but education, mental health, et cetera. And that it took us a long time doing research and demonstration, but we like to say at this point in time that we are engaged in implementation in every state, in every community, leading to universal sustained systems. I’m not going to go through the history; I’m just going to tell you what’s in the package more than giving you the presentation so that new people understand that we really started in the 80s. With Surgeon General Cooper, you’re going to hear tomorrow, who provides terrific leadership to us. Peter mentioned the Title V revision of the legislation in ’89, where we took out, locate, diagnose and treat crippled children, and talked about supporting the development of community systems of services.

We took advantage of the health goals both in 2000 and 2010 to write the goal that the states would have those services in place by 2010. And I quite honestly believe that that is possible. And we also broadened the definition of who children with special healthcare needs were, which was published in pediatrics in ’98. The six core outcomes, I trust everybody in this room knows what they are. They’re the basic programs that we are directing across the country, and in truth, that are being directed across the Bureau for all children. I think that’s important that what we started for children with special healthcare needs and talk about a system applies to all children. We couldn’t possibly put a system in place for just children with special healthcare needs. It has to be for all children. And so we talk about the family participation, the family centered care. We are involved with the Medical Home program to get access to quality healthcare. Improving that uninsured and underinsured issues, screening early and continuously; much of that is being done actually in the other branches.

And hopefully, at that community level, supporting the organization off all of the services so that families can use them easily. And increasingly dealing with the transition of youth. I’m really very impressed with how many of the states are moving into the transition issues to move the adolescents into adult to healthcare, and we at the federal level have a number of activities we will share with you over the days. Current status: Partial implementation. The state and national data release of the survey that’s out there. We’re really excited to have that released because it took a while to get it released. And that gives us performance for the states on the six performance measures. I also wanted to note that in addition to the law and in addition to the goals for the country, we actually have this agenda in what’s called the President’s New Freedom Initiative. It is based on a Supreme Court decision that said you had to provide community options for all persons with disabilities, and actually charged HRSA with developing and implementing a plan to achieve appropriate community based systems of services for children and youth with special needs.

So we not only have our own law, we have judicial Supreme Court decision saying that has to be done. I have two programs. David has lots of wonderful programs. I have two. I have a 19 th century program and I have a 21 st century program. And the 19 th century program is doing what we should’ve done in the 19 th century, which is actually getting this agenda in place so that children are in healthcare, they have insurance, the services are out to support them. And that is called the integrated services activities that we’re involved with, with six overall strategies that you all know in terms of working with the Block Grant, providing our discretionary programs, measuring and monitoring, et cetera. We have put in here a listing of those six performance measures that I talked about and defined for you what we think is the desired national status by 2005. We did that first a few years ago and said, “Oh, my gosh, we got lots of time to do it,” and then we suddenly realized it is 2005, but we’re feeling very good about what we laid out to do that 100 percent of the SPRANS grants would require family centered and cultural competence, that 50 percent of family voice is state coordinators, and 100 percent of the family health information centers would provide some of the data needed.

We would implement the family centers in six more states, which we did through funding actually from Medicaid, which is wonderful, and the Outreach Plan. So that I just want to point out to you in each of our six performance measures, we’re talking about kind of having established what we would like to see by 2005. I’d encourage you to look at those and ask yourself how you’re doing in your own states on each of those. We’re feeling very good about our Medical Home Program, both in terms of the leadership that’s coming from the Academy and the major national medium (inaudible) this year, but also an enormous interest at the federal level with our other agencies in the Medical Home Model and advancing that. And I’m not going to take the time because I want to give you some time for a break to walk through each of those six performance measures; but as I say, take a look at them. Take a look at how we’ve thought about what we could accomplish, and ask yourself how you’re doing in your states because in truth, the implementation of this agenda is at the state and community level.

It is not going to happen without that leadership from there. Universal newborn hearing screening, as Peter pointed out, is separately funded, but it is certainly part of that system of care. The integrated community systems, interestingly, is, everybody says, is a tremendously challenging piece in terms of how do we work with our friends in childcare and education and what have you. Seventy-five percent of state programs hopefully by 2005 have implemented strategies to build those; 100 percent of the states have access to technical assistance in getting that and hopefully status reports will be available on all states implementation off the community based service systems, and we will talk about that. And as I say, the adolescent transition efforts that are ongoing, I know all of you or many, many of the states have asked for incentive grants to begin some kind of (inaudible) that. I will tell you that the Office of Disability at the secretary’s level is also currently working with us on what’s called a policy forum, and there will be two policy forums on this issue.

They are working through the National Governor’s Association and the National Governor’s Association have to indicate an interest in this and some willingness to put through a team and come up with ideas. So as those are developed here at this level, we will certainly share that with you and hope that health can be a very vital part of that. Also, in the transition area, I want you to know that we are working very closely with the American Academy of Pediatrics on a policy consensus statement that they have developed and are moving forward. Let me also talk about what I consider the 21 st century program, because while we’re back trying to get the basic infrastructure and service system in place in a universal sustained way for all these kids, we are obviously also dealing with one of the fastest growing emerging fields there is and that is genetics. Genetics states it’s responsibility and involvement of healthcare and public health infrastructure as it primarily rates to the newborn screening; and you’re aware of that and that’s being integrated into the community system of services.

But we are also very much engaged with genetics with a special emphasis on financial, ethical, legal and social implication. It’s called the (inaudible) Program. But as the genetic science emerges from the genome and looks for translation in those service systems, there really are some very complex ethical, social issues that are being dealt with by a number of efforts in our division, including working on genetic literacy in terms of all people--the health professionals particularly, but also the general public to understand the benefits, risks, limitations and implications of genetic (inaudible). And educational needs and genetics of the health professions is one large part of this. Within the genetics branch, we also have for years supported the hemophilia, the thalassemia , and now the sickle cell for comprehensive specialty care for those populations. I will tell you, we’ve also had transferred to us the traumatic brain injury program so they will be working out of our division. We’ve been asked to develop a new epilepsy program out of our division. And I am actually co-chairing a workgroup to develop a national road map, it’s called.

Things are now road maps. A national road map as it relates to epilepsy across the lifespan. And that’s been exciting, so we are adding a lot of specialty programs to the division. And I am actually having an expert workgroup set up with Children’s Hospitals, Academy of Pediatrics , Shriners, all the specialty groups to really talk about what the issues are and what we believe is going to believe a shortage of specialty and some specialty providers for children with special healthcare needs. That’s been a very exciting expert workgroup to put together. Everybody is very committed to it. We’re struggling to get some of the data on that and we have our own specialty programs as we do that, and national leadership in genetics. So that that is how our agency defines its genetics services, and so with that, I will leave it. We have our genetics programs, our staff will be here. We’ll be happy to talk to you. We have our community systems programs, both Bonnie and Michelle from the branches and their staff will be here to give you that information.