AMCHP 2006 ANNUAL CONFERENCE
EARLY CHILDHOOD: BUILDING THE FOUNDATION FOR LIFELONG HEALTH
March 4-8, 2006
KAY JOHNSON: Good morning. How's that? I'm very pleased to be here. I was thinking about this opportunity, and, um, the pleasure to be invited again to speak at an AMCHP meeting, and I reflected on the first time I spoke at an AMCHP meeting was 20 years ago. It was 1986. It was a very different time politically. We were thinking about a lot of issues differently and I'm particularly struck by how much more sophisticated we've become at analyzing, understanding and focusing on our problems, about using evidence and about growing good programs in Title V and working with partners in Medicaid and elsewhere.
The whole situation has changed, and I'm going to give you a little bit of overview about what the map looks like today before I go into some more specific strategies. As many of you know, I am wearing a lot of hats these days. And one very important one to me is work on Project Thrive. And in the shorthand, Project Thrive is this early childhood comprehensive systems or the X or sex policy center.
But what we're actually trying to do now, based at the National Center for Children in Poverty at Columbia University is to try to work very closely with states to insure that young children and their families have access to integrated, high‑quality health care, child care and early learning, early intervention and family support.
And we have a logic model, a new brochure. You're going hear more about this from Jane Knitzer over the lunchtime. But just to you that we really want you to engage both the ECCS coordinators, the Title V directors and their partners in ongoing peer‑to‑peer learning and conversations about how we do better at serving young children and improving early childhood development.
Some of you have seen before that I have this very complicated slide that had a lot of funding streams. I've now organized the funding streams in a circle. I don't know that it makes it easier to understand, but it certainly looks pretty. And what you can see in the center here is the five core components of the Early Childhood Comprehensive Systems grants. So thinking about assuring access to and Medical Home, thinking about the role of mental health and social‑emotional support, parenting education, family support and the early care and learning.
And what I've done is actually color coded around those. This is part of a document that we've released called Spending Smarter. If you want more detail about our view of how you can use these specific resources, I'm going to talk about it, but we also have some tools for you in that document.
So how are we doing in terms of financing early childhood services? And in challenging myself to answer that question for you today, I began to look at some 50 state data sets and put together some maps, because it's sort of a quick take for me at where we're going.
And what ‑‑ I'm going to show you these two that will sort of warm us up to think about the programs. Now you have a chance to find your state on the map, which I know you can do. And you can maybe find some other states that you like to compare yourselves to routinely.
And typically, in these ‑‑ and I've tried to make it so that, at a glance, the higher the number, in fact, the darker the color. So that you can see that the percentage of children under less than age six by state, those in the very darkest blue had the highest percentages of that. Well, what does it mean in terms of percentage of young children in poverty if a lot of your efforts are directed to youngest children? So we see this went there.
I want to go on to talk a little bit about what we know, because we think about Medicaid so much in financing and how can we use the data that are available in Medicaid to understand what's going on in Medicaid?
This one, not to pick on these particular states, but because they make a very nice graphic array, that's not a map, that begins to give you the contrast. On the bottom bars ‑‑ this is all infants ‑‑ on the bottom bars that is the percentage of infants who actually had at least one EPSDT screen.
Now, most states expect on their period (inaudible) schedules that these babies will have five. And so this is just the percentage of babies that had one. So you can see we're not getting all the time to those five. And this (inaudible) shows some information that Ed Schors showed you yesterday.
And then if you look on the top bars, you can see some of the variation in terms of how many babies were referred as a result of an EPSDT screening exam? You can see that those percentages are actually very low. Only two of these states exceed a 20‑percent referral. And this is just referred for further diagnostic work and follow‑up, not even getting to the point of referring always for services.
So now I'm going to show you what that looks like for infants and toddlers on a nationwide basis. Now, here we're talking about the children, the one‑year‑olds and two‑year‑olds and how many of them had one EPSDT periodic visit in that year? And note that most states periodic EPSDT schedules call for one, typically calling for three during this period of time.
And then the map‑around referrals. And what you can see is there isn't a consistent pattern color in these maps. And the that likelihood that a child gets screened is not necessarily reflective in the likelihood that they would get referred in a state system. And that has to do with both pediatrician behavior, local health department practices, the emphasis on quality in Medicaid. It has to do with a whole interactive set of systems questions. Whether or not the child has a medical home. Whether or not it's family‑centered care. I'm sure all of those factors are reflected in these numbers.
So how about financing for child development services and managed care? Many of you have a majority of your children in managed‑care plans. And if you look here, these are slightly old data. They're from 2000, and it's work that was supported by the Commonwealth Fund. And what you can see on the left‑hand side is developmental screening and how it was financed. And on the right‑hand side, child development services and how they were financed.
And I know you cannot read the legend. So if you look from left on the purple, no additional funding. The provider just did it. In those tallest bars, covered by EPSDT. In that next, where you get a drop to really the yellow bar, they had a specific reimbursement. So it wasn't bundled, but they had something that was a specific payment for that service. And the next bar, the light green, that was provided by other agencies. Maybe a Title V agency. Maybe an early intervention agency.
The dark bar ‑‑ the darkest bar there that they had a higher rate for extra visits. In other words, they were getting paid a differential for seeing these children. And then going on to the orange, the service was furnished by other practitioners. They got referred elsewhere out and they're not exactly sure. And then external private funding is the very last bar on the right. So somehow they had grant funding to do that. So we're not funding this all in one way, but providers are piecing together and communities are piecing together the financing across these services.
Let's look again at managed care. And remember that the variation is very strong. And that last slide was all about how the services were financed in managed care. So it was a whole variety of ways, even in that context. The basic message here, and you see the infant visits on the top lines and the toddler visits, if you will, on the lower lines, the toddler and preschoolers and what you can see is the gap between the commercial and the Medicaid. And what you can see is that there is a gap in each.
So if we look at the HEDIS Measure, and say, did the children in these plans get six or more well‑child visits in the first year of life, and that you can say that the mean in Medicaid was 45 percent of children got those visits, and in commercial plans, 68 percent got those visits, almost 69 percent. And then what's the difference between the high and the low performers? So the low performers, just to use the Medicaid example here, is that you would have, in the 10th percentile, 15 percent of children actually had their proper number of visits. In the high performers, 65 percent.
And even if we didn't do better than the highest performers today, and I would argue we should do better than 65 percent, but even if we didn't do higher than the highest performers today, there's a gap of 50 points between high‑ and low‑performing plans. There's a lot of room for quality improvement there. Even for something that we're already financing.
So what are the other services? Moving beyond some of the narrow, just the EPSDT screens. These are data from the National Academy of State Health Policy, a report that they recently prepared on State approaches to promoting young children's healthy mental development. The question is about, does Medicaid pay for services for at‑risk children with social‑emotional delay but no diagnosis? This is state reporting on what they do.
The most notable thing, if you go to the report and look at the charts is that sometimes Medicaid said yes, and MCH says no, and mental health says they don't know. And that there really was not a lot of consistency across the agencies in what the answer was to the same question. Which means that we could more in terms of comprehensive systems building to think about how you get to that answer. So, yes, is dark red, and no is yellow. And then the pink ones are the ones where even the Medicaid agency didn't know. And then the others did not respond to that question.
Beyond that, to me, is that there's another question behind that in saying that in essence, every state, when it's paying for routine visits for a child, might be paying for services for at‑risk children for social‑emotional delay. They might not be paying for certain categories of services.
So it's a complex set of questions and building systems and clarifying communication is part of the answer to us getting toward the financing? It's not just a question of do we or do we not cover it?
So what about the linkage to Title V? If we look at the variation, and here again, I'm using infants because it's a discrete category that's available in the Title V data system. And what you can see is that there's a wide range in terms of how many of the infants served in state Title V programs actually were using Medicaid coverage. Again, looking at that linkage between where the dollars are coming from, and these children are using dual dollars.
The primary child care arrangement with children in low‑income families. I wanted to highlight this one because so many of you, in thinking about early childhood systems, are looking at child care issues. And I wanted to show you that a child care arrangement is not just a child care arrangement.
And this is work done at the Urban Institute in a report called Caring for Children of Color and looking at the variation in how children of color are cared for. If you see on the far right‑hand side, those are the children where there is ‑‑ these are all working families, parents in residence, parents have a high school education, income below 200 percent of poverty.
There's a lot more variation in the data that's in the report, but just to take one slide to show you. On the right‑hand side of your slide, those are the children where the parent ‑‑ the family where the parents are figuring it out. The parents are actually delivering the care. You know, one's working night shift and one's working day shift or they're figuring out how to care for the child themselves even though the parents are working.
On the left‑hand side what you can see is those in center‑based care. And what you can see, in particular, is that black children are far more likely to be in center‑based care arrangements; that Hispanic children of all races are far more likely to be in their relative or kinship care. And I think what this highlights is that we often just think about building our relationships and our financing and our developmental service linkages to centers. And we have to remember that not all of the children are there. That these are all significant differences by a race and ethnicity about where children are served, and we have to be mindful of that in building systems.
And then, on to Part C. Here we see the percentage of infants and toddlers served in Part C by state. Again, wide variation. This could be because children with disabilities are more likely to be born in one state or another. But I suspect it has much more to do with our service delivery systems then it has to do with the random distribution of births across states.
And some of you know from your performance reviews by federal agencies that they are telling you that you're above or below what is the norm. If you don't know those numbers for your state, I'd encourage you to find them out.
And then the percentage of three and four‑year‑olds enrolled by school, if we're thinking about where children are and how we serve them with developmental services. Again, a very wide range. And this is the whole range of preschool, Head Start‑type arrangements.
So in the words of Jane Knitzer, Jane has put this in a slide last week and I'm going to borrow it from her this morning. That we really want to move toward a day when geography is not the driving factor behind access and financing for these services.
So how can we get beyond this? How can we move ahead? That, by the way, is me as a preschooler. I like to include one of those. We were all preschoolers once. Think back to your own early childhood. We've been doing work through Project Thrive and NCCP has a wide range of work that they're doing on early childhood. And we have ‑‑ there's a companion set of reports, one of which talks ‑‑ is called Spending Smarter. It's a funding guide, and I'm going to talk from that today. And then we've taken that into being a Project Thrive issue brief called Spending Smarter in ECCS, in essence. So thinking more specifically about Title V ‑related strategies.
What are the challenges to doing this financing? Restrictions on eligibility. Restrictions on benefits. The failure of the system to screen and get children in early. Lack of reimbursement, particularly when children don't have a diagnosed condition. Services not being accessible to families and particularly to the parents when they are the individuals who need the support, and they are uninsured, as many low‑income working parents and other parents are.
The services are not being delivered because there are too few providers. And the providers tell us that financing is a barrier for them to be further participating, but we know that training is another barrier there. And gaps between the systems where the kids just fall through the cracks.
So how might we be maximizing EPSDT in Medicaid? It's a long list there. There's been a lot of work done on this and Commonwealth and papers that Jane Knitzer and I have been writing. But basically, restructuring those policies so that we're really focusing on what's the difference between screening and basic screening, more advanced diagnostic assessments, and what kind of tools are people using?
Are they reimbursing for the services that children need? If it's an infant and there is a need to change the family context, how are we engaging the parent in that family therapy? My most notable example there is where Florida saw that that was a fundamental clarification in their law, not a big policy change. Illinois and other states have done that as well.
I want to just talk for a minute about the Deficit Reduction Act of 2005. The Deficit Reduction Act made important changes in Medicaid. I don't want to dwell on this a lot, but just to say that there's an opportunity in terms of eligibility and the Family Opportunity Act to cover more children with special health care needs under new state options. That there are provisions which give states permission to charge premiums and to change all of their cost‑sharing roles. I think all of you need to think about how those affect families. Whether the data that you have to show the potential impact on families. And if your state legislature has passed them, then what are the ways that public health agencies, in particular, can support families in understanding those cost‑sharing and premium arrangements so that they are able to maintain their coverage and not exceed limits?
It gives states the opportunity to use benchmark coverage plans instead of the EPSDT standard as the main source of coverage. And the way that people are generally thinking about this right now is think about it like you would think about a managed‑care plan. Where some of the services would be in‑plan and some of the services would be out of plan or covered otherwise perhaps in fee for service. People are saying that this does not remove the mandated recovery EPSDT services, but may change very much the way that people get their coverage and the way that services are delivered.
And then finally, there are provisions related to targeted case management. There seems to be more questions about the targeted case management provisions that understanding at the moment we're really going to have to wait for federal agency clarification on this.
But if you are funding something major, like your home visiting program or your care coordination program for children with special health care needs with Medicaid targeted case management dollars, you ought to be paying very careful attention to how this gets interpreted and be prepared to think about how you're funding fits into new rules.
The Title V Block Grant provides opportunities, particularly because you're flexible. And all of you are doing the Early Childhood Comprehensive Systems planning. And about half of you are moving toward implementation in that. We heard good presentations yesterday from Washington and New Mexico. Some of the work particularly in places like New Mexico and other states, Connecticut, where they've been sure to include the fiscal assessment as part of their assessment.
If you're still in your planning or if you've moved to implementation, think about an early childhood children's budget. Think about analyzing the flow of funds that you have there. Obviously, including these children with social‑emotional needs and your children with special health care needs groups. And thinking about how these developmental services fit into your medical home initiative.
There are an array of other programs, thinking about how CHIP covers mental and developmental services. Thinking about the role of your community health centers and other federally‑qualified health centers. Some states, such as Vermont and Colorado and others, are at the community level, like Los Angeles, are using their children's mental health block grants to focus on prevention of severe emotional disorders. And thinking, as some communities have, about how community mental health centers can be a hub for mental health consultation developmental services and linkages to family supports.
There are a lot of important linkages that we need to develop with child care arrangements, health care consultants, mental health care consultants, training more providers about the content of development and what we know best about development.
I was a child care worker and teacher and director for 10 years. And I think, unfortunately, the field has changed only modestly since I left child development in the early 1980s. And the fact is that most of the people caring for young children, in an array of child care arrangements, do not have the knowledge they need about child development and do not have the linkage they need to health care systems.
Head Start and Early Head Start, clear opportunities, clear opportunities to develop linkages both in those formal arrangements about providing health and mental health consultation, but also to remember that there's a whole group of parents there who are parent involvement coordinators, parent educators, thinking about the parents that are leaders in Head Start programs. It's another way for us to use our talented parent resources.
Peter Simon mentioned to me this morning the work that's going on, not necessarily through Head Start, but through libraries. So thinking about the parent‑driven strategies and many of them are naturally starting from Head Start programs.
The special education program. The biggest item here, in my view, is thinking about the continuity between your early intervention program and your program for the three‑ to five‑year‑olds for special ed. There are big gaps. Children fall through those cracks. We don't figure out a way to link them continuously. And states are spending a lot of money in these programs.
There are a lot of federal rules, but there's a lot of your state dollars, and actually, local tax dollars going there. Are you using those dollars in the most efficient and effective way to provide the services that you know children need?
How many people in this room know when I talk about ‑‑ if I said CAPTA? That's pretty good. Child Abuse Prevention and Treatment Act. Fairly recent provisions about three years ago to link those children who have experienced and confirmed abuse and neglect. I would also add into those children, we should be linking those who witness domestic violence, to link them to early intervention for assessment.
We know those children have experienced traumatic events. Why are we not systematically linking them? Since CAPTA now requires that you do it. How are you systematically linking them? If you don't know the answer for that in your state, you should.
There are ways to use TANF. Particularly to transfer the TANF dollars over to the Child Care Development Fund or the Social Services Block Grant so you have more flexibility in using it.
The top 10 things you might be thinking about now. It's a long list and it's fine print. You might be reviewing your current funding. If you've already done that, are you figuring out how you're going to sustain the dollars that you have, or how you're going to reallocate dollars? Are the arrangements that you're putting in part of an ad hoc work group or are there actually written interagency agreements that support that work? Particularly important as legislatures and governors change to do that.
The blending and braiding of dollars. Thinking about how, do we use the blended dollars for cross‑training? If one program doesn't have enough, can we put four or five together to get that work done? I think clarifying the who pays first and who pays last and who all pays in terms of Part C Medicaid, Title V, mental health. The biggest reason that we get people falling through gaps is that we aren't clear about who's covered and how we pay for it, it seems to me.
Then the billing mechanisms have to be right and the focus has to be right. So we're thinking about parent‑child interventions. If you don't think you can tackle this all, why not start with one high‑risk population and begin to work from there? So together, I believe, that we can build more coordinated systems to help our youngest children thrive and that we have a lot of money we're spending now to do that work.
If you want to contact us to find out more about what's going on, you can e‑mail us at thrive@nccp.org. And this is our staff team, myself and Jane Knitzer, you're going to hear from later, Suzanne (inaudible), she's our project coordinator, who's here in the room, and a pediatrician leader from Columbia University in the Melman School, Dr. Leslie Davidson. Thank you.