AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
MERLE McPHERSON: Thanks Cassie. I think you’ve just heard from the two experts in the needs assessment process and that’s tremendously helpful because that’s where the needs assessment direction comes from and how you do it. What I think I am going to do today is talk more about the needs assessment for what. Because I really want to talk about the six core national goals identified by the President’s Freedom Initiative. And how many of you here know what we mean when we say the President’s Freedom Initiative? How many here are families, by the way? And how many are staff or directors from the special needs programs? And I presume there are a few other people here that represent other interests but more primarily the Title V family, I guess. So just to make it clear what it is we’re talking about when we talk about a needs assessment, I’m going to focus on what was a new legislative responsibility that was written in 1989.
How many were in the programs in 1989? A few of you were there. I think it’s important in terms of thinking about the five year needs assessment and understanding why there’s differences in your states as you go to work with the states, is that these programs began in the 1930’s, they were called Crippled Children’s Programs and they were required to locate, diagnose and treat crippled children. So they tended to be medical, clinical programs based in the states so over the years were changing, but it wasn’t until 1989 that we really rewrote the legislation noting that states did provide services to Children with Special Health Care Needs; took out the Crippled Children’s part for a better name, but added a new requirement that said the Title V programs in this country would take the responsibility for facilitating the development of community based systems of services for children with special health care needs and their families. And we wrote a new definition of Children with Special Health Care Needs. It’s a much broader definition than what was included in the old Crippled Children’s.
That requirement has been added to the health goals to the nation for 2010 and we do track data to say that we are achieving them. And with the President’s Freedom Initiative, which was a report to the President from ten major federal agencies that were asked to identify how to reduce barriers and improve community options for persons with disabilities so they could live in communities, and that included children. And in that report, which is a President’s Executive Order based on a Supreme Court decision that said we had to find community options. It says very clearly that we will plan and implement a community based system of services for these children and their families. So there is judicial requirements through a Presidential Order, there is health goals for the nation, and there is our Title V legislation that says that’s what we’re supposed to be about. And we have a twenty to twenty-five year history here of working together to try to achieve and to implement that.
We like to say that there is partial implementation in every state. And I think you would agree with me that there is partial implementation in every state. But we have a significant way to go in many. The six performance measures, which Cassie has read to you and which I think you know, are how we define that community system of services. So the understanding was, and they are built into our performance measures at the federal level as well as your performance measures at the state level, and they are reported on through the GPRA, the Government Performance Act. I don’t know whether I need to go over those six performance measures again, but let me just walk through what those six performance measures are. And I’m going to simplify them a little bit. We will work with families to have family-professional partnership and family centered care.
All children will be in health care through what we call a medical home which just simply acknowledges the need for access to good quality primary care and related services for all these children. That there will be adequate sources of financing for these children. That we will screen early and continuously so that we are identifying as early as possibly and moving them into early interventions. And that community services will be organized so that families can use them easily. And that if we do the work that we say we do, youth will be healthy and ready to work; move into adult health care independence and employment. So I think if you stop and think about it; I mean, and that’s what I think maybe the first things to do at the state level is to dream a little. To vision a little. To say, “If I could get those six things in place and if I could tie those together so that in every community in my state there were those family supports and services.
I think I could say that I had a system of care that was responsive to the needs of children and families.” And I would encourage you to sit back and think about your state and try to say to yourself, “What would it look like? Where would it be? Who do I need to work with? What are some of the things I know? Where are the strengths and weaknesses in these kinds of things?” As you begin to really say, “Okay I’ve got to do a needs assessment and I’ve got to get data and I’ve got to put it together and I’ve got to get in an application and get it to Washington .” Know where you want to go yourself and really spend some time with coalitions about what the dream is for. The system services in your state. We say we want family centered care and family-professional partnerships. You all know that we have a national grass roots organization of families called Family Voices. You all know that you have Family Voices chapters in your states there and ready to work with you and I hope that connection is made from both sides. We are also funding, and CMS Medicaid is also funding, family to family health information centers. And I also know that in most of your states you have worked to build family centered activities in your own programs.
You have staff in the Title V programs; you’ve got contracts, et cetera, so you’ve got a lot of stuff going on to respond to that first building block. And it is critical, it is absolutely critical, to the model of care that we’re trying to put in place. This is a family centered model of care. It’s not just a requirement that you have to have some families and you have to be advocates. This is changing the model of care so that the model of care is a family provider partnership. Based on partnership. Families have access to ongoing comprehensive health care through a medical home. I think you will find in all states that there is either an AAP supported mentoring team for the development of medical homes or, you have gotten grants from us for developing statewide medical homes.
The Academy of Pediatrics has a website that is funded by us as a national center for medical homes that you can draw on and learn a lot of information about. But in the needs assessment this is a piece that kind of stretches public health. Public health does not have an historical record of working very closely with the primary care networks in your states and sometimes you don’t know all of that information. Actually I think the American Academy chapters in your states, or the medical societies in your states or some of the state legislative committees, et cetera, have information, do know, certainly in Virginia where I live, I’ve nowhere to go to find out where every primary provider in that state is and how many there is in this county, and how many there is in this county, et cetera, et cetera.
So that information adds to the material that you have from our national survey, from your state survey, et cetera. But it helps you come to some understanding about what’s your capacity. And in some of the states we know we’re going to find that there are communities that don’t have any primary care providers. Or the rural areas, they’re very weak, et cetera. But there is information about that medical home and you have information from yourselves and the Academies, et cetera, about the work that is going on to build true medical homes, which is not just a source of care but is a source of good quality care, as defined by the Academy.
The adequate source of funding? Wow. And I guess all of you probably, over the years, have a pretty good sense in your own state that our data will give you some information at the state level. And the way we look at it from the federal level is the issue of the uninsured, which is fairly easy to get in terms of what’s the population, what’s your gap group? Who isn’t covered by Medicaid, CHIP, and private insurance? Who are those kids? But the much bigger issue is the under insured. And some documentation of the services that are needed for these children are, generally, much more difficult to come by. You may be able to, I don’t know if you have good relationships with your Medicaid and you really do need to draw your Medicaid directors in, and can access some of their data, et cetera. But that whole issue of really thinking about who is insured, who isn’t insured, and what some of the major gaps are as you go through, will peg some digging out from national service, from your data sets in the state and also from some of the national centers that we fund and reports that you have. And you need to do that.
I think as I’m talking you understand that the charge that was given to these programs was to deal with this whole population of children and report on a systematic way of what’s in your state. It has nothing to do with what you have to serve and manage. It has to do with that broader role of facilitating the development of community systems. The thing that I think is probably the hardest performance measure of the six is the one that says communities will be organized so families can use them easily. And that is the crux of the community system of services, obviously. It’s some acknowledgement that we’re going to build the capacity in every town, in every neighborhood, in every city, in a way that communities have a set of services and supports and that there is community organization and activity going on in those communities, so that the doctors are working with the schools and the schools are working with the communities and that you’re really getting community systems of services. I think that’s the toughest one.
I think it’s the one that’s the least developed of the six performance measures. I think it’s the one that we need to do more on in providing help and support and I would tell you that that’s probably the hardest one to articulate in terms of what you have there. We don’t have much data in the national survey that answers that question. And in fact the new children’s health survey, which is just coming out, Bonnie Strickland, who most of you know who work with me, is going to try to take that data and look at it and see if we can understand a little bit more about communities’ responsiveness to these children and families. And then the transition activities you know are one of the development ones in the state. Once again, that issue, there is some in the national survey, et cetera. I know it’s a hard job in the states because this is a relatively new legislative mandate that we have worked with the states to develop without new money or change in resources, so that I know you’re dealing with the programs that you had under the old legislation and moving to build the community system of services.
I applaud you for all that you have been able to accomplish today. There truly is partial implementation in all of those six activities in your states. I think what we would really like to see, in the needs assessment on an ongoing basis, is that evidence of bringing those resources together so that you can describe, for example, all the screening that’s going on in your state and how it links together, and how it’s not fragmented and duplicated. So it is a matter of going through the six performance measures, but it is also the matter ultimately of sitting down and talking about the connectiveness of those six performance measures and the relationships between the various programs in the state. This is a five year plan, which means that the next plan will be in 2010.
Our health goals for the nation say that all states will have community based systems of services in place by 2010. So I would like you to keep that in mind as you do a five year assessment and plan. As you vision it, ask yourself where you want to be in 2010. Can you reach that goal, and how you might. And maybe you should start at 2010 and then back it up to say--and we do some of that in terms of the work that we do. We actually have, for our division, in each of those outcomes a strategic plan. Ours is simply two pages, and I didn’t bring enough copies or I’d share these with you because I think it’d give you some idea of what do. It is the why we need this component, why do you need family-professional partnerships. What some of the documentation and evidence is for that. The accomplishments to date in terms of where we feel we are with those activities.
And then the desired national status by 2005. These were written to 2005. We’re now sitting down to rewrite these from 2005 on to the next five years. And then our action steps to achieve that. That’s in our strategic plan. But it is that kind of a process you need to put yourself through as you think these through. It’s why are you doing it? What have you accomplished to date? What’s your goals for 2010? You’ve got a five year assessment. And then what are your activities for the next year? And I think I’ll leave it at that. I’m delighted to see the work groups set up to talk about each of the six performance measures and I think I’ll stay around and float to learn something.