AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
BETSY ANDERSON: I’m Betsy Anderson. I’m a parent, an old parent who works with Family Voices. I have three grown children and an adorable grand child. I have one child with special healthcare needs and two others. And it’s my pleasure, this morning with my colleagues to open this session today. And with me, right here, is Nan Streeter who is the Director of Maternal and Child Health for the Department of Health in Utah . And her background is in nursing. She had early experience in the NICU and I think she may have--I’m sure that was quite challenging. And I’m sure that stepping into administrative roles and filling the shoes of Peter Van Dyke was perhaps equally challenging.
And next to her is Carolyn Slack who is the Director of Family Health Policy in Columbus , Ohio . She’s with the Maternal and Child Health Division. Her background is also in nursing. And she also has interest in epidemiology, where she has won an award for effective practice at the local level. And she also has--in fact, she and Nan both have connections to CityMatCH, which is the program that looks at major cities, at both the strengths and the issues in maternal and child health in cities.
Our session--and we--it’s our intention to give you some background and overview and think from national, state to local levels so that you can get a sense of MCH works and how it works together at those different levels. It’s our intention that this is a--this is a good session for people who are brand new to AMCHP or brand new to MCH. So let me ask, how many people are--for--is this the first AMCHP Conference? A lot of people. So one thing I think we want to say to you is don’t let anything feel overwhelming. Talk to--there are lots of very friendly people here, so don’t hesitate to ask questions or to speak up and, you know, ask what’s on your mind or to ask about going to lunch with somebody or something like that. Now some of you, I think, might be professional in the field. How many people in the room work on the professional side of things in Title V? Okay. And how many people here are parents? And another great group, so terrific.
For people who are experienced AMCHP goers and experience with Title V, we think that maybe some of the presentations that we have might be--you might want to think about how you could use these back home in your--or adapt them for use in your own departments with other staff or other families or newcomers to your departments. So with that I think we’ll get going. And my task is to give you an overview of Title V and I want you to know that this PowerPoint slide show is virtually the same as what is in this little booklet. And because I think we’re going to be running close on these booklets, if you wouldn’t mind only taking one. But if you want more for your department you can let me know at the Family Voices Office in Boston and we’ll be very glad to send you more for your staff or if you’re having a meeting or an orientation for newcomers.
So Title V, we often hear the words Title V and Maternal and Child Health and they’re all kind of mixed up together. But probably the most important thing for people to know is this--this part that’s written in red, that Title V is the nation’s oldest federal program to improve the health of all mothers and children, including children with special healthcare needs. That’s such an important kind of catch phrase for you to think about in your state and in your work. And we have a Title V Advisory Committee for Family Voices and some of the members are actually here in this room. Lynn or others would you raise your hand if you’re here, back there Susan, Ruth, Lynn. And I think many of you know that Family Voices is 13 years old this year, and we’re a network of families and friends speaking on behalf of children with special healthcare needs.
On the federal level Health and Human Services is the big government agency that oversees health for our nation. And within it is HRSA, on that second line, the Health Resources and Services Administration. And within that is the entity that we most often hear named, The Maternal and Child Health Bureau. And it’s The Maternal and Child Health Bureau that really administers the provisions of Title V. So that’s why there’s all this, you know, people say Title V or they say Maternal and Child Health and they’re kind of talking about the same things. Then in our states, and this is what Nan will be talking about, and Carolyn also, there are Maternal and Child Health Programs and Children and Youth with Special Healthcare Needs. And often those are within one entity, but sometimes they are in sister agencies. And for fun I want to give you a little bit of the background and history, because Title V is really about change.
So if you’re somebody who’s new to Title V and thinking about what needs to be happening or what’s going on in your state, it’s really--it should be very reinforcing to think that Title V is really about meeting the needs of all mothers and children, addressing the needs in the state. And those needs change over time and they really have dramatically. The Children’s Bureau was established in 1912 and that is the fore runner of what has become The Maternal and Child Health Bureau. And in 1921 this was the first congressional act that gave grants for public health money to go to states. Before that, everybody was just on their own. And this--the federal allotment of money to states was opposed by many important groups in our country at that time, The American Medical Association, the Catholic Church and a number of others. And they were effective enough to get it repealed. And the idea was that this was--health was a personal matter.
They didn’t feel it was appropriate for the federal government to be kind of meddling, you know, in people’s personal lives, and because of that kind of difference, the pediatricians who were part of the American Medical Association, but really supported the Shepherd-Towner Act, broke-off and formed their own organization. So this was big deal. This was a real advocacy move. So in 1930 because of this, the American Academy of Pediatrics was formed. That was also the same year as the first White House Conference on Children. And there is a wonderful children’s charter, President Hoover was the president then. And that children’s charter detailed an incredible range of needs for--in health, education, welfare. If you looked at that list today and I think--I imagine that some of you here probably have.
I think you would find yourself nodding that, you know, yeah, these are things we can support. These are things we want for children. I think you can also see, 1930, this was right after the Great Depression. So there was not a lot of extra money around. Families in many parts of the country were struggling. So this was an important time for the government to be stepping in and supporting families and children. And here are some great quotes, some of you are probably very familiar with these. But it really kind of, I think, gives you a flavor of what the mind-et was then. And this is quote from Grace Abbot who was an early chief of the Children’s Bureau. And at that time, you know, of course there were things like a Department of Agriculture, the government was very interested in big business in the kind of economic directions of the country. And she said, “Some times when I get home at night in Washington , I feel as though I’ve been in a great traffic jam. In that traffic jam there are all kinds of vehicles moving up toward the Capitol.
Conveyances of the army, limousines in which the Department of Commerce rides. It becomes more congested and more difficult, and then because the responsibility is mine and I must, I take a very firm hold on the handles of the baby carriage and I wheel it into traffic.” So what she means is, she’s going to take responsibility. The government should have a role for children and families. And she’s going to make sure that it, you know, that it gets recognized. And it still gives me the shivers to kind of think of that, that, um, that we take it so much for granted today. Don’t we, that, you know, government has a role in responsibility for children’s interests. And then the social commentator, Will Rogers, who was also very supportive of these actions, put things--he framed things in a different and more humorous way.
And he was making the comparison, he says, “I’m so glad so many people in America are taking up the children’s work. Being a ranchman and a farmer and also 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 get some disease.” So making the comparison that, you know, the government was there with assistance if your livestock, you know, was ill. But if your kids were ill, you know, again you were kind of left on your own. In 1935 Title V was authorized as part of the Social Security Act and then I’m skipping over many years here, but actually let me just mention one thing that in its very beginnings the Children’s Bureau was in the Department of Labor. And some of you who can remember that high school history may think back to those--that was the era when a great concern was that kids were in the workplace. And so that was a major concern that, you know, children, you know, should children be in school or should, you know, or should they be in there working, you know, 12, 14, 16 hours a day.
So early on the Department of Labor. But anyway, so the office has now moved to the Public Health Service and in, I’m really skipping a lot of territory here, and some of this, 1981, I bet people--people in this room, some of us can remember 1981 OBRA, the Omnibus Budget Reconciliation Act converted Title V to a Block Grant. How many people remember that, in this room? Only a few of us oldies. And this was under Reagan, wasn’t it? And the idea here was to give states more control over those federal funds. And I remember in my state going around with my Title V director because Title V gave our state quite a lot of money and our state health department dispersed it. So there was money that went to Children’s Hospital for clinics and things. But if you ask people, they had no idea that the Health Department did anything.
They thought Children’s Hospital, you know, Children’s Hospital provided the clinics. So that was a kind of era when you didn’t need to know where the money came from, you just, you know, you cared about the services. You know, understandably, that was the important thing. Later on, as you’ll see, it became more important to be able to follow that line and to support the appropriations. So, anyway--and a Block Grant, I think you know, is a sort of, a set amount of money and it gives states wide latitude to cover a number of different services or programs within it. Then in 1989, this was kind of a reaction to 1981, there was still that Block Grant, still a large sum of money that went to states. But now states had to be more accountable because it--there was really--there was really a feeling that it was not appropriate to just give money to states and then never ask them how they were spending it or, you know, so you know very different from the era in which we’re in today where accountability is a big deal. And is assumed that states--that transparency will be there.
So here you can see a number of things, needs assessments, measurable objectives, all that kind of thing is put into place. So you get this sense of lots of different changes going on, that really reflect the times. Title V is a real federal state partnership. States receive federal dollars and it’s based on a formula, based on the number of low-income children. There’s a three to, uh, is it three state dollars for every four federal. So states have to match that money and many states match much more. Many states provide a lot more money than that. And I’m going to skip a little quickly through this next part because I know you can read it in your book, but I wanted you to get a sense of some of the actual language that’s in Title V, so that you can refer back to it if you ever need to. So here it is again that important overall statement, “To improve the health of all mothers and children,” and so you can see things like access to quality maternal and child health services, to reduce infant mortality, preventable diseases, immunize--increase the number of immunized children, these are all things that are in the federal legislation, um, to increase the number of low-income children receiving health assessments.
So, even though Title V has an interest and is responsible for the health of all mothers and children, there’s always a special emphasis on low-income or vulnerable families. And to provide preventative and primary care and then here’s, uh, special language for children with special healthcare needs. To provide rehabilitation services, to provide and promote family centered, community based coordinated care. Familiar mantra for some of you who may be new, that you’ll want to learn. And in addition to those Title V also provides grant funds and they provide--some of those are called SPRANS grants, Special Projects of Regional and National Significance. Many people in this room probably have those special grants, so besides giving money directly to states, usually to state health departments, there are other grants for genetic diseases, training for maternal and child health and other sorts of conditions.
Title V requires states to establish a fair method of allocating funds. And if they do impose any charges they have to make sure that low-income families can really still get the services that they need, that whatever--if they do have a charge that it doesn’t mean--that it doesn’t get in the way of families receiving those services. Title V also requires states to provide a toll-free hotline for the use of parents, it says parents not families, but again our language now has moved now more towards saying families. And this is something that if you’re not familiar with this in your state you might want to find our more, what the 800 number is, and what kinds of calls, what information they provide. And also it asks our state Title V programs to coordinate closely with Medicaid, with EPSDT, Early Pediatric Screening Diagnosis and Treatment, and we hope that EPSDT is going to stay largely in place. This is a threatening year that we’re all looking at what Congress is going to do to that Medicaid budget and whether they’re going to make any changes to EPSDT. But it certainly asks the Health Department to work closely with payers because we have come to know that the payers are a very important factor in whether people receive healthcare and to carry out coordination services.
Title V requires states to provide services to identify pregnant women and infants, and think this is--Carolyn, this is your special area I think of interest. And also on a different note, to make the Title V Block Grant application public within the state, to facilitate comment. So--and in a minute we’re going to talk a little more about the Title V Block Grant itself. And now the next--and in the next piece of this, I want to just think with you a little bit about family centered care and family involvement with Title V because as an old parent I can well remember, kind of, knocking on the doors of our health department. And we had fantastic people working there, but there was nothing that encouraged them--they had not--it was long enough ago so that it was not usual at all for families to be part of meetings, part of planning, not any of that kind of stuff.
So they were very nice to me, but it wasn’t like parents were routinely invited in to be part of things. In fact a funny story, once, I remember our director, Art Pappas, he was quite a well known orthopedic surgeon, he wasn’t really an administrator, I think he would be the first to say. And one day he said, “Betsy,” he said, “I’m going to come to your house and I’m going to tell you everything you want to know about Title V.” What he meant was, this way I would know everything and I wouldn’t be bothering him with calls all the time. This was just a different era. I mean he was a great person, but he didn’t have the sense that, you know, that parents really should be part of everything because it just wasn’t done. It didn’t happen in our states. In 1992 we did a survey of children with special healthcare needs programs and we asked about the ways parents participated on advisory councils, support for parent activities, we asked a number of questions. And it’s really terrific to look back now and see where states are. And we have a newer survey that I’ll mention in just a minute.
And this, I think, is something that is old enough, it’s really out of print. We have a few copies left but I have a feeling we should scan this and get it up on some kind of web for people to look at, because it’s really instructive to kind of see where states were, from 1992, you know, more than 10 years ago. And then in that survey that we did, we were totally amazed to learn how many families were starting to be employed by Title V programs. How many people who are parents here are employed by a Title V program? So look at this, this just blew our minds when we learned this because this was new territory. And you all are still kind of--this is still something that is kind of moving along and evolving. And I hope you have chance to talk with each other while you’re here. In fact, think there might be a session on employment or maybe that was the last conference I was at.
Anyway, hope you’ll have a chance to catch up with others because you’ll learn an awful lot about sharing ideas, about, you know, what you’re doing or what you might be doing. And so we learned about, you know, the kinds of jobs and everything was brand new, getting tried out for the first time. Now in--a couple of years ago we did a new survey and we covered some of the same territory and we added some new kinds of questions. And this time we looked not only at the children with special healthcare needs programs which had kind of had a head start, but we also looked at the MCH programs, very, very interesting. And there is a lot happening in MCH programs, but it has not gotten quite the attention that the involvement of parents has gotten in children with special healthcare needs programs. And in fact, some of us--some who are on the MCH side are presenting a session on that on Monday. I think it’s Monday afternoon and it’s called Family Involvement, the MCH side of the equation.
You can find out more information and findings from that survey. And one of the other things that we did was we put together a toolbox, what we learned was and we still want to continue to add to it, when we talked to states we learned about so many great activities and tools that people had developed in their states, that we thought we really don’t want people to have to reinvent the wheel unless they need to. And so we got their permission to post materials on the website, so you can find those in the toolbox. One thing that if in your state, um, it might be very instructive too if you’re bringing families together to find out, you know, how did your public health program become established? How old is it and why? Now I’m from Boston so you know, can you imagine Paul Revere was on our first public health? I mean Paul was very active, wasn’t he? Not only a silver smith and he was riding to Lexington and Concord and there he was on the public health commission, too. So he was definitely a Renaissance Man.
And I think you’ll also find out some very interesting and important people who’ve been associated with your programs. You know, you will find that there is some important and instructive history and one of the stories that I love from my state is, I mean, we just have had great people in our health department. And a very close friend of mine Claire Dairy, who’s no longer living was very involved with kids with special healthcare needs. And I thought how much she would enjoy this conference. But unbeknownst to our health department, the nursing home industry, as we were working--all working on community based care, um, the nursing home industry in our state got going and got funds passed for nursing homes for kids with special healthcare needs. And then they came around to the health department and tried to bribe health department workers with trips to the Bahamas and perfume and, you know, can you imagine.
Those old days and they didn’t accept those bribes, you’ll be very, very please to know. So I’m sure there are equally entertaining and instructive stories in your own states. You might also find out how did families first become involved. You know, we were kind of working in Boston and we began to get calls from other parts of the country. And we knew there were other active interested parents out there. We had no idea how to, you know, for us our health department was so receptive and there were some interesting models that began to be developed. But you know, it’s really interesting to find out, you know, how it came about in your own states. I remember in Michigan , you know, parents early on were active there. So without many models, you know, people have to take some chances, they have to kind of step-out there. And so you might find it a lot of fun to talk to those parents and to the professionals who supported them.
You know, for me at this conference, seeing Alan Crocker who’s was at the LEND meetings today. Alan just took me right along to meetings with him. I would never have known about some of the meetings. And I certainly would never have been invited to them, but Alan just took me right along with them and, you know, that was that. So I think other parents too will tell you that there was an important professional mentor, there was somebody inside the system who kind of brought them along because it really was a different world. And you might be interested to find out what were families active in? What did they want to see accomplished? Now, back to the Title V Block Grant and this kind of era. In each era there were important challenges and I think for some of you who may be hearing about Healthy people 2010 for the first time, these are health objectives for the nation. You can find those on the website, it’s many--very thick, many, many goals. And these are goals for the nation. But personally, I think--don’t you think that families, people on the street should know about these health goals for the nation.
I feel that way and I don’t think many people do. But the Maternal and Child Health Bureau, as other agencies, has to show that what they’re doing is--kind of links up with Healthy people 2010. So that’s a term you will hear. The Government Performance and Results Act really asks states to show that they are being effective, that they are spending public money wisely. And so you’ll also hear about GPRA. As all of you are well aware, we were not successful; we have not been successful in really reforming our healthcare system in one--not in one fell swoop. So we’re doing things in incremental ways. So that makes a lot of changes along the way and that means a constant bit of agitation trying to make the system do what we really want it to do. We’ve learned to handle and work with managed care. Health disparities is still a major issue on everybody’s agenda, when you look at the differences in illness and death rates for people of diverse backgrounds, it really is quite shocking.
So that’s something your state will be especially interested in and certainly healthcare quality. How we can improve care, make services equitable and make sure they’re of high quality. My battery is fully charged, I’m glad to know that. I was afraid it was running on the battery and not the electricity. So now at this conference you’re going to hear quite a bit about Title V Block Grants and performance measures. So this is just a little overview. Well, let me see now. We might have to get that--resume slide show. Okay. Here we are. For those of you who are new, you should now that MCH talks about their interest in three categories. In the first category are mothers, pregnant woman and infants to age one. And the second category is children and adolescence. And the third is children and youth with special healthcare needs. So many activities within our states focus on these three populations. So if you just kind of keep that in the back of your mind. And next, this is really a key--key issue here and as families we really struggled with this. But this is a very important concept, the MCH pyramid. And so I’m just going to go through it briefly, but this is something, it might take people who are new a little bit of time to absorb.
There are four levels to this pyramid and your state health department or your state Title V agency has to describe and carry out many activities based on these four levels. So the top level is direct healthcare services, that is those are actual clinics or health services for children or for pregnant women, et cetera. And the second level is what are called enabling services and here enabling services are services that enable you to take advantage of direct healthcare. So if you’ve got healthcare coverage but you can’t get to the clinic because you have no transportation, transportation becomes an enabling service that your Title V program might provide or if you’ve got the health services, but you speak Spanish and there’s no translator, then translation might become an enabling service. So I think you can kind of get the idea of how that works.
The next level are population based services. And those are things that are provided not on an individual basis, but to large, large groups. And so things like immunizations, led screening, services like that fall into the category of population based services. And then at the bottom of this pyramid, the base is really infrastructure building services. And these are all the services that you kind of need in place in order to make the other things happen. So needs assessment, evaluation, planning, program development, all of those pieces that really keep a department going and able to handle different things that might happen in terms of health. That is the pyramid. And one of the things that families typically say when they look at this is, “Gee, you know, what I really want is, I want those direct services. I’d really like that part to be not just a little tip of the program but I’d like that to be a lot bigger.” And the reason it is smaller, in other times, health departments provided a lot more direct services. And I think many people here can remember the kind of struggle with that shift.
But what everybody learned was that most people, not everybody, but most people actually had health insurance. They had private insurance or they had Medicaid. So those services were covering, paying for the direct services. And remember Title V is assuring the health, it doesn’t mean that Title V has to provide the services directly; it means that they have to ensure the health, make sure that somebody is providing those services. So, really it makes more sense for Title V, with more limited dollars to provide only a limited number of direct services and to spend, you know, and to make sure that more families are eligible for other services so other payers can pick up the bill for those services. Now what we did was, we made a family pyramid here to see what, you know, how this might--how this pyramid might play out for us as families.
So we said well our direct actions, that top of the pyramid, and maybe we should make the top bigger for us but anyway is, hugs for your kids or dinner on the table or getting your kids teeth brushed. Those are all direct kind of services and actions. And enabling activities we put, you know, doing the grocery shopping, getting to the doctor, you know, you can kind of see that sort of thing. And then going down and we said the basic, the infrastructure for families is food, housing, clothing, health education, social and emotional and spiritual moral. So we tried to make a counterpart to what MCH was going with their pyramid. This might not be a perfect analogy, but I think you can--I hope you can get a little bit of the--.
And, um, now this is, uh, Title V needs assessments loom very large this year so I believe everyone will be hearing about those this year. There is a big needs assessment every five years and this year it’s due in July of this summer. And this will give an overview of the health status by MCH population, so by those three population groups, uh, discussed earlier. And they have to also be described by those four levels of the pyramid. And each state has to come up with 10 priority needs. So, it would be very instructive I think, interesting for you to find out what needs your state has identified, which they identified five years ago, these are available on the website. And--but also to learn how you can be part of the process and to see what your state identifies as the needs for the next five years. And some of them might be the same needs, but there might be, I imagine there would be some different ones as well.
One of the major things, and this was a very important innovation that Dr. Peter Van Dyke, who’s the Director of The Maternal and Child Health Bureau, really focused on when he became director, is having all states collect some of the same data so that we could look across the country and see how we were doing in important areas. So there are 18 national performance measures. The first six of them are for children with special healthcare needs, and the next are for other populations, although they might also apply to children with special healthcare needs. And also if you have a separate grant from Maternal and Child Health, you also collect data, too. So now state Title V Block Grants have to be accountable and the federal staff meets with states to review and families are part of those reviews of the Title V Block Grants.
The states provide a narrative description and they describe how they’re doing with each performance measure and outcome measure and they have a number of reports. And The Maternal and Child Health Bureau must report to Congress. So this is different from those earlier days when the government was just going to give this money to the states and not care at all what--not pay any attention to what happened to it. States provide, and I’m sure Nan will probably touch on this, um, develop a Title V Block Grant report. It’s an annual report. It’s due in July every year and it talks about what the state’s goals are, how they’ve spent money, whether they’ve achieved or the extent to which they’ve achieved the goals or any problems that they’ve encountered. And they must show that 30 percent of their funds are spent on primary and preventative care, 30 percent on children and youth with special healthcare needs and no more than 10 percent on administration.
So in addition to the national performance measures and the outcome measures, states also identify 7 to 10 state performance measures. And those are to address special needs within their state. Again, that’s something I think you’ll be very interested in because states will be spending time, money and effort on those--the areas that they identify within their states as important. They develop--in addition to the report, they develop--the report cover is what they have done in the past and the application describes how they intent to spend the money--the next years money, in the future. I mentioned that families have been part of these Title V Block Grant reviews and all states have been reviewed and all territories but one have been reviewed by families and that will happen this year. But I additionally want to mention that in many cases states bring a parent with them to the review, that’s at their own discretion. It’s an incredible learning process for families. So if you have a chance to do that I think you’ll find it very instructive.
You will find you can get access to your state’s report, so you can find it, you can read the narrative, you can find out--you can just read the whole report online. You can look at the data, you can compare your state to other states in your region or nationally. And you can find it at this very long URL, this one in the middle. And for the moment you can still get to it at MCHdata.net. They keep telling us that one may disappear. We’re making a pitch for keeping something simple. I don’t think that long one is very intuitive. So, anyway, so that is an overview of Title V. I hope it’s provided you with some background information that you’ll find useful. We have other materials from Family Voices and we’re updating some of our other booklets. So some of them are kind of in process and we’ll be glad to share with--some of these are on the website and some of them as I said are--there are changes being made to some of them. They’re going to--for instance, we know that they’re going to be reviewing the performance measures this year, so there may be some changes to those. And so that is an overview of Title V. So, I’m going to now turn this over to Nan Streeter because you’re going to be next I think. And I’m also going to mention that I think maybe after Nan ’s presentation we will take just a break for a few minutes and then we’ll come back. But, thank you.