AMCHP 2006 ANNUAL CONFERENCE
EARLY CHILDHOOD: BUILDING THE FOUNDATION FOR LIFELONG HEALTH
March 4-8, 2006
BETSY ANDERSON: Well, good morning. So how many people think it’s 5:00 a.m.? I know you do, Maria. And I hope you’re keeping your coats on for a while. We heard them say if that you could actually see your breath in this room earlier, so we have made progress. I don’t know if we’d say it’s warm but it is warmer.
And I think most of you might have noticed that there are handouts, some handouts on the back table. Eddie and Maria’s handout are there. And also on the ends of the aisles there are some additional handouts so we hope you all get those. And if you’d encourage other people who come in, as they might come in later, to pick those up that would be great.
And, as Susan said, we really want to welcome everybody to this first session of AMCHP. We want to mention professionals who might be new to your Title V program in states. We want to welcome families of all kids, kids with special needs, kids without special needs. Everybody who’s kind of new and we hope we’ll kind of be able to give you a little background, a little overview, of Title V which is the kind of driving force for many of our activities in states. And then we’re going to talk a little about our MCH and children with special healthcare needs programs. And some people in the room are, in fact, not new but are experienced. And we hope that you will sort of, during the small group sessions and at other times, kind of speak up and add to any of the comments and the discussion because there is as wealth of information and people in this room who have a lot to contribute to the directions in which our activities for families move.
So now we want to give you a flavor of Title V and the legislation. And it’s such an exciting piece of legislation, and I think one message in my own mind is to help you think about this as a kind of living piece of piece of legislation. That is, it’s not that it can be changed with a snap of the fingers but that Title V moves to incorporate new issues and that we all have a role in shaping how Title V looks in our states and across the country.
The key thing is that it’s the nation’s oldest federal program to improve the health of mothers and children, and that is so significant. And I’m going to try to give you a little flavor of how that came about. And we at Family Voices have worked on this presentation. Many people in this room have helped. I think many of you know that Family Voices began in 1992, so we’re not very old but a growing network.
And Title V is administered under Health and Human Services; that’s the big federal agency. And under that is, you know, there are all these different levels, so under that is HRSA, the Health Resources and Services Administration, and then the Maternal and Child Health Bureau which most of us are perhaps a little more familiar with. And Maternal and Child Health administers the provisions of Title V. They are the responsible agency. And each of our states gets money from Title V and those go to maternal and child health and children with special healthcare needs programs in our states. And then you’re going to hear from Eddie and Maria about that in a little bit.
And a little bit of background. In 1912 the Children’s Bureau was established and that was really the forerunner of the Maternal and Child Health Bureau. And up until that time there had not been any government entity with the responsibility for the health of women and children, of our families. It’s hard to imagine now but this was a giant kind of breakthrough.
And in 1921 there was money that was given to states to improve the health of women and children. Now this was really opposed by some major entities in our country, some very well respected institutions: the Catholic Church, the American Medical Association, and I think they felt the government didn’t have any business kind of meddling in what were very personal family affairs. And today, of course, we have some little echoes but obviously the Catholic Church and the American Medical Association are no longer opposed to this kind of direction. But at the time there was not this kind of sense that the federal government had a role in people’s personal health lives. And this was, just to give you an idea of how dramatic a split this was, physicians at the time who were involved in the care of children felt differently and they felt that this was in fact a good direction to move in, and they felt so strongly about it that they broke away from the American Medical Association and formed the American Academy of Pediatrics. So I think today we can only imagine the kind of uproar and, you know, what went into a decision of that magnitude. But that was really the basis for the formation of the Academy of Pediatrics, that really there should be advocacy and there should be a kind of partnership role of government to improve the health of women and children.
And there were the first White House conferences on children and many of those early conferences also focused on things like children in the workforce, because that was a major issue at that time. That a lot of children were not in school, were not living healthy lives, were, in fact, working in mills of various kinds.
So, you know, some of the issues are ones that resonate with us today but others are ones that I hope are largely ones that have been addressed, but we all know there are some of those same themes that kind of resonate. And to me this is just a wonderful kind of quotation that sort of brings the flavor of that time, a couple of them here. Grace Abbot was one of these – there were just these wonderful women and they were women who were the heads of the Children’s Bureau in those early days, and here’s a quote from Grace Abbot. And I don’t know if you can all read it up there but she says -- what she’s thinking about is the government has things like a Department of Agriculture. It has interests that represent business. And she’s saying, ‘Sometimes when I get home at night in Washington I feel as if I’ve just been in a great traffic jam and in that jam there are all kinds of vehicles moving towards the capitol, the conveyances of the army.” So she’s thinking about, you know, the government’s interest in the Army and protection. “Limousines in which the Department of Commerce rides.” So big business. “It becomes more congested and difficult and then, because the responsibility is mine and I must, I take a firm hold of the handles of the baby carriage and I wheel it into traffic.” So she’s talking about the importance of families being part of the government’s interest and I think it’s just a very, a wonderful kind of metaphor there.
And Will Rogers, who I’m sure many people have heard of, was a great social commentator at that time. And he, taking his kind of more humorous approach, in also thinking about the importance of the role the government could play, says, “I’m mighty glad so many people in America are taking up children’s work. Being a ranch man and a farmer and also a child-owner, I’ve often wished that when one of my children gets sick I could wire or call some government expert and have him look after them like I can do if one of my cows or pigs gets some disease.” So he’s contrasting the fact that he can call them in for his animals but when something’s wrong with kids, at that time, you know, who could you call? Who could you enlist? So, you know, I hope that gives you a little flavor of the kind of ferment that went on that really developed what has become the Maternal and Child Health Program.
So, shortly after this, in 1935, Title V was authorized as the Social Security Act. And then over the intervening years many different programs in our states evolved. And that would probably be kind of fun for some of you to think about. What were the first programs in your state and, you know, how did they develop? What was the kind of evolution of those?
Beginning in the ‘80s there began to be a sense that it was also important not just for the government to give our states money but that in some ways states needed to be a little more accountable for it and that there needed to be priorities set and that there needed to be some kind of reporting process so that people would know how that money was spent and how reasonable it was. And also, as anybody who’s involved in politics knows, if you want to get money, if you feel you need money, it certainly is a good idea to document the need and how it’s being spent. So in order to kind of safeguard funds and perhaps increase the appropriations, this was seen as an important direction to move in. So things like needs assessments, budget accountability, things that to us today seem like, you know, but this perhaps gives you a flavor of what wasn’t going on before, you know, so. But all of our programs have evolved in so many different ways. The idea of having public input here, something we’re going to talk a bit about.
And Title V is a federal-state partnership. Each of our states – there’s a formula and states provide a match. And it’s not the same for all our states; it’s based on the number of low-income children in the state. And so here, I’m not going to read all of these appropriations, just maybe a few of them. And where there are quotes that’s language directly from the legislation. If you have one of the little booklets in the back you can see this exact language. And if we’ve run out I’ll be glad to give you more. But to provide and assure mothers and children access to quality maternal and child health services. To reduce infant mortality. To immunize children. You know, these are kind of really basic sorts of things. To increase the number of low income children receiving health assessments. To promote health. And to provide rehabilitation for, as we now say, children with special healthcare needs. In those early days, by the way, it was cripple children. I’m sure there are people here in this room who remember that. That felt like a giant breakthrough to move past that language. But and then to provide and promote family centered community based care, a very important message that many people, and I know some people in this room really worked hard to attain.
In addition, Title V authorizes funding for research grants. And some people in this room probably have some of those grants. And it also requires states to establish a fair method. So they’re recognizing that some people have varying degrees of resources. So if there’s going to be a charge for something, making sure that there’s a method of applying a sliding fee scale for people. And to assure that charges, if imposed, will be made public. So there aren’t kind of secret kind of things, so everything’s out in the open, transparent, as we say. And that all of states should provide a toll-free hotline for the use of families. And to coordinate with Medicaid. You know, all these kind of important sorts of things. And to identify services for pregnant women and infants eligible for Medicaid. And finally, to make the Block Grant application public within the state to facilitate comment. And we’re going to talk a little bit more about that.
Now we want to sort of turn to think about the role of families and our involvement as a parent, myself, with Title V. And we’ve, in the early ‘90s we did a survey of children with special healthcare needs programs to try to figure out what role families have had in our states. And then we also at that time found that there were many families who were actually employed by Title V and that number has really increased dramatically. And in a newer survey that we’ve done we can see how the role of families has grown, not only in the children with special healthcare needs programs but also in the maternal and child health programs. And in maternal and child health it hasn’t been publicized quite as much but that’s kind of a direction that I think many of us are interested in moving in and making the role of families as visible and active as it is in children with special healthcare needs programs.
When we use this discussion in states, we sometimes encourage states to think about how their public health program was first established and why. And it’s fun for me to think, in Boston, you know who was part of our first public health program? Paul Revere. So it’s quite a history in many of our states and I’m sure all of your states will have fun and interesting things that you discover about why certain programs developed, what the history was and what some of the landmark events are.
And that would be interesting, probably, for others in your state to know too, is how it’s evolved over the years. Sometimes we think our programs do so many things it’s hard to kind of get a handle on it. But I think it’s important to think about some of those stories that were real life issues for people and how far we’ve come, given that we all think that we have a lot on our agendas to address today.
For families we think also what was the state history with families and how and why did families become part of that agenda in our states? And certainly for me as an old parent, you know, there was just no original – parents were not thought to be real partners and so there wasn’t really a place for us. And we had to kind of knock on those doors and keep knocking. And we had to be pestering and we had to be kind of, you know, trying to make a case for why we should be at the table. Things have changed quite dramatically and I think the whole idea of partnership with families and with many others in our communities has really, it’s just moved things light years ahead because there is a recognition that nobody can do it alone and that we need to have many partners in our states and communities working on public health and that also means being knowledgeable.
So there has been a lot of goals and challenges. Some of you are very familiar, probably, with the goals for the nation. Those kind of get updated every ten years or so. So right now we’re working on the Healthy People 2010 Health objectives. But I would say there’s still lot of people, families and others, who really don’t know about the goals for the nation. And to me I think that’s something that would be important. In order to enlist people it would be important for them to know more about this. Professionals are probably very familiar with the Government Performance and Results Act that kind of wanted to make things a little more streamlined and really make it clear why certain things have to be done but cut down on some of the paperwork and the red tape and that kind of stuff.
Everybody is probably very familiar with the idea of incremental healthcare reform that we have not been able yet to really achieve access to healthcare for all of our nation. And so we’ve been instead trying to do it kind of piecemeal. So that’s a big item on everybody’s agenda. Managed care, which, you know, we can probably almost take that off the list now because we’re at a different point in time but I remember thinking, ‘Managed care, you know, what’s that?’ You know, I didn’t have any idea. It sort of came out of the blue. And health disparities and health inequities I think are on everybody’s agenda. The fact that there are still, for diverse populations, there are still goals that need to be met in really all of our states. Healthcare quality, these are things that are on all of our agendas that we need to continue to address.
Each year our state Title V programs must apply to the federal government for those funds that they’re going to provide the match. And the MCH populations fall into these various categories, that is, they’re mothers, pregnant women, infants to age one, children and adolescents, and children and youth with special healthcare needs. And as a rule our states have to account for the needs and their populations. And the Maternal and Child Health Bureau under Dr. Peter van Dyck’s leadership has developed something called the MCH pyramid, which at first glance to many of us seems complex, maybe even to those of you who have been at this for a while. And the Bureau has what we consider really a triangle but we at Family Voices have actually made it a pyramid. And I’m showing you this only because it’s important to know what the construct is that the Maternal and Child Health Bureau uses. And at the top level you see those direct healthcare services.
And originally a lot of programs that are state health programs delivered were direct health services clinics. And some still do, but increasingly that’s a smaller number of the pyramid and the larger parts are in these other areas. Enabling services, that is, a family might have access to Medicaid or private insurance but can they get to the services? Do they need translation for services? So these are things that our Title V program thinks about. And then population-based services, the kind of broad services for a whole wide group of people like immunizations or lead screening that everybody needs. It’s not specific to, you know, a few individuals. And finally, what they call infrastructure building services, kind of the basis so that when there is a Hurricane Katrina or when AIDS comes out of nowhere there is a structure in place that can address whatever the new and emerging needs might be. And states have to account for how they spend money and how they deliver services according to these levels of the pyramid.
Now we tried to make one that was somewhat more related to families and how we might think about the kind of counterparts that we thought about, the direct services that families might deliver to kids. You know, putting dinner on the table, that kind of thing, an enabling services. So we tried to kind of translate the pyramid into something that would make more sense for us.
And I think many of you are familiar with the idea that there is a needs assessment that’s done now, a big one, every five years. And we’re going to talk something about this in the second part of this session because our states just completed their five year needs assessment. And how many people here were involved in some way or know about that needs assessment in states? Yes. A lot of people here. So this was a big deal and we’ll talk a little more about that. But doing that needs assessment gives states a kind of starting point for where they need to go from there. And they have to list their ten priority needs.
In addition, all of our states have to collect data on 18 national performance measures. Those are determined with states but by the Maternal and Child Health Bureau and other partners. Those may change a little bit this year but they largely stay the same. So that there’s a way to look across the county at some of these measures. And in your handouts you have a list of those 18 measures. In addition other grantees also collect data on additional performance measures.
As the states turn in their Block Grants in July of every year those reports are reviewed by federal staff and also by outside reviewers. And some of those outside reviewers include parents. Are there parents in this room who’ve taken part in a Block Grant review? I see a few hands back there. Yeah. So, again, that’s part of sort of bringing families into this whole process. So states provide an extensive narrative description and all kinds of data. And then the Maternal and Child Health Bureau takes information from those reports and gives it to Congress so that it really closes that loop, because Congress voted the money to begin with. So this is a way of giving them feedback on how states are doing, what’s been happening.
And in those reports states describe, you know, how they’ve spent the funds, what they’ve done, and they must show that 30 percent of the funds are spent on primary and preventive care for children; that 30 percent are spent on children with special healthcare needs; and no more than ten percent for administration.
Along with those 18 national measures, states also select seven to ten state negotiated measures. So there might be very important issues in your state that are a little different from what other states around you need. And those are kind of approved by the Maternal and Child Health Bureau, and that’s something we’re going to talk about in more detail in our small groups. And there are also six outcome measures. And I think personally as a parents I wish there were one or two that didn’t have to deal with death but death is an easy thing to count, I think, so a lot of the outcome measures relate to measures.
In addition, states tell the government how they intend to use funds for the coming year. And they talk about what the needs are, if there are changes in those needs, what their resources are, and they describe everything by those four levels of the pyramid. We’ve involved families with the Block Grant since 1997 and there have been national meetings so that families can, you know, learn enough about this to participate. And additionally some families bring families with them, some states bring families with them as part of their state teams.
The Maternal and Child Health Bureau has put together a fabulous web site, the Title V Information System, in which it is very easy for anybody to find information about your state or other states. And there’s an information sheet in your packet that shows you how to get into your state’s report, or if you want to find out what your state’s priority needs were or what your state’s performance measures were, and states turn their reports in in July and then by October this information is all up on the web. So it’s really very easily accessible to all of us so you can see what your state, you know, said about any of these areas.
We’ve been developing material for families so that the families have the background to be good partners with professionals and we hope you’ll talk to us at Family Voices about any of these kinds of things.
And that’s the end of my part of this. But we really hope that you will think about the role that you, all of us, have in kind of making changes and improving services in our states and across the nation because, you know, I hope you get the sense that this has really been a living, breathing, piece of federal legislation, that is has not just put in place and stayed the same. That we all have a responsibility to kind of see what is really happening in our states and what is needed.
And now I’m going to turn this over to my colleagues who are going to share information from their programs but thinking broadly about how those programs work in relationship to other programs across the country.