AMCHP 2006 ANNUAL CONFERENCE
EARLY CHILDHOOD: BUILDING THE FOUNDATION FOR LIFELONG HEALTH
March 4-8, 2006
WILLIAM HOLLINSHEAD: Good morning. I’m not only taking us to a different scale, moving from 500,000 births in California to little Rhode Island, is a bit of a leap, but a little different level of discussion, too. And first as sort of a caveat, as this was originally promulgated, somebody had the idea that I was going to talk about using a family planning waiver in Rhode Island. We’re unfortunately, one of the states that doesn’t have a family planning waiver yet, although we do have extended family planning benefits as part of our Medicaid managed care and that’s been in place for years. It didn’t seem appropriate for me to talk about something that you are doing in your state but we aren’t yet doing in ours. So I decided to boast, aim a little higher at a conceptual level about how this all fits together on an intergenerational life trajectory kind of a model that we’ve been using in this and many other areas and then get down at a very periconceptional level and give you some data from the women’s health screening and referral program that we have actually had in place now for nearly a decade.
So there are handouts but I’m afraid I did not schlep quite enough for this crowd. I’m delighted at the level of interest. Please share with a friend. They’re a little basic sort of PowerPoint 101 type slides that come from my very early learning in that wonderful world.
First, a couple of things about Rhode Island. We are pretty small. And like you, I’m sure; we’ve seen some pretty dramatic changes over the last generation. We had lots of big families. The top of that bar in 1965 is fifth in subsequent deliveries, really dramatic birth crash between ’65 and ’75 in the most catholic state in the country. I leave you to speculate on the underpinnings of that. And then slow increases but with small families, more parents having fewer kids through the eighties and then stabilization in the nineties and on to today at a birth cohort of roughly 13,000. So, that’s little Rhode Island. I gather there are hospitals in California that have more babies in a year than we have statewide.
Family health in Rhode Island, we are very committed to the mantra, the models, even the pyramids of Title V and think of things in comprehensive and family centered kinds of ways. We are entirely community based, as I’ll point out in a minute. We have no clinical staff on the state payroll, really doing hands on care with rare exceptions. If you have a strange enough infectious disease, you might meet one of us, but beyond that we rely on community allies to do essentially everything that involves direct eye contact with the citizens.
We’re very concerned about the environments in which families are raising children and doing other things families do and we define that very broadly to include no just toxic substances but violence and stress and issues of poverty. And virtually all our planning is drive be a sort of a concept of developmental trajectories. And since the Department of Homeland Security will no longer let me carry a laser pointer to meetings, I’ll try to make do with a curser here for the next couple of slides.
This is an old one that some of you have seen in other presentations from Rhode Island, sort of an intergenerational model of development that takes roles over the cycles of birth, early childhood, around through the school age and adolescent years. Hopefully a period of young adulthood before pregnancy comes again, then you’ve got the same person as a parent. Round about, with any luck at all, grandparents are still around to help with this challenge. That’s the role I’m enjoying every possible moment as Annette mentioned and then off into whatever elders do and I’m afraid I’m getting closer to that, too. Maybe you go up into the anchor of the Rhode Island logo. Oop, that’s not what I wanted to do.
As I’ve said, our environment is one of a widely dispersed and pretty robust community health center network, statewide, lots of access, probably between 15 and 18 percent of all the citizens of Rhode Island every year. We’ve built our programs including Title X and most of the Title V and the WIC and immunization and all those things into that environment. There are a few other venders, but it’s mostly within a community health center kind of context, very high coverage. We probably have one of the highest rates other than Hawaii of coverage. Commercial is deteriorating, but the state’s picked up coverage for virtually all families including immigrants and such under RightCare. And there are pretty solid family planning benefits that extend at least two years postpartum built into that. And we have a contraceptive equity statute that makes sure that anyone who is insured gets birth control as much as they get anything else.
We do use this life course trajectory approach in loads of other context, but I’m going to try to make it relevant to the pre and peri and interconceptional world here, believing that if you think of it in the same way and begin to use the same language about recognition and response to risks and threats during adolescence and young adulthood and periconceptionally and in early childhood and through the school health program and such to begin to get everybody singing more or less the same music, even if there’s some challenges to the harmony involved. We work really hard to make it not just risks and threats but the development of resilience and protective assets, which we believe is equally important for adults as it is for kids. And then I’ll show you some of the models that we use. This is a familiar one that I trust most of you have seen either in your clinical lives or raising your grandchildren, a life trajectory model that we’ve all thought about. It has the stages in it by implication and adolescent growth spurt and such, but not much labeling beyond height and weight.
This is a model we use a lot in Rhode Island and it’s impossible to read even on the screen, let alone in a hand out there but it’s designed to get the whole world of Title V onto a single page including medical, genetic, behavioral, social, environmental issues and how they bear through prenatal, early childhood, early adult out to the conception in the next generation and who could be involved not only including people like obstetricians and nurses and special ed and early interventionists but clergy and extended family and coaches and other people are up on the top there. So we really do try to see the world very globally as a Title V challenge.
This is the fairly new thing that I’m going to try to make sense of as a model, oop, not if I can’t leave it on the screen. Many of you, I’m sure have seen the materials that came out of actually the early childhood projects, Igal Halfin and his teams work at UCLA, that talk about life trajectories, both an optimal life trajectory, one that begins with a healthy delivery right here at age zero and goes through rich early childhood experiences like Head Start and reading and skilled parents and a medical home and good schooling and safety and mentors and sports and good job and friends and social support and marriage and all of that often, hopefully a little beyond this stage, pregnancy, delivery and another generation begins up here somewhere. But life continues good and you can continue to be productive at a high level and keep your health and have a good extended family that take care of you well into your eight decade and then you have sort of an abrupt end at an advanced age over here somewhere.
The opposite of that, and no individual obviously ever follows and trajectory perfectly, is sort of low investment worst case kind of life course approach that for the moment we’ll decide begins with a healthy delivery but includes lead poisoning and poor nutrition and absent parents and violence and depression and school failure and drug use and all of those bad things that risk assessments often look for, divorce, injuries, obesity, on and on.
The difference between the two, we argue, is the developmental dividend of prevention. And the two points which I’m going to try to make here and I’m absolutely delighted that Rob Grunewald was our keynoter because I think this relates to what he was telling us. It’s that you make a big investment in the early years and then during the great, second great acceleration of brain development, adolescence, that we haven’t much talked about yet, make significant investments here. You get up to this high trajectory before you start having kids and other things. If you don’t, with low investment and lots of problems early on, adulthood begins early and you’re out in the workforce with not much training and your period of productivity is shorter and lower and the area under the curve here, say from 20 to 60 is much smaller. Those economic dividends that he was arguing are important to capture in the next century are just not there, whereas up here you’ve got a huge area under the curve and a lot of productivity that’s going to make a difference for this year and many to come.
Now if you start stacking these things up, you can draw a picture that’s admittedly sort of primitive but it, I hope, makes the point. Again, low investment, early pregnancy, relatively modest productivity, another cycle of low investment, modest productivity, et cetera, you wind up with a life course trajectory that’s kind of worst case scenario. The opposite one gives you a much more positive social and national future I would argue. The adult productivity area is much, much larger.
The other point worth making, it seems to me, is that if you take these little sort of maroon circles as the pregnancies, on this life trajectory, there’s only a relatively brief period of good insurance and engagement with the healthcare system. There’s often very unstable healthcare. It’s part of the other under investments you often see with families struggling on a under invested depleted kind of a life course so that your preconception education and care opportunities really aren’t there. Adolescence, well, actually adolescence on this life trajectory are often medically homeless for practical purposes, too. But at least they have health insurance usually. And again, you have to squeeze it all in here because in this country we haven’t yet decided how to fill that longer gap where the real preconception care could occur as I am suggesting it did at least, and Rhode Island data would indicate it’s true. Even, you know, middle class kids doing fine in school tend to disconnect from their pediatricians and not get very much healthcare or useful medical hominess in the later adolescent years and we ought to be working on that, too. Okay.
Up through the early ‘90s we were actually the biggest prenatal care provider in the state. We covered about a third of the deliveries. Most of the low-income women came to a big broad prenatal care system that we sponsored in a variety of settings close to the community health centers. And it had a big elaborate risk assessment protocol that we used in the prenatal period and used for data and the like. All of that got consolidated after we had gotten everybody coverage into a Medicaid managed care model called RightCare, which actually works pretty well and covers even more people up to 250 or 300 percent of poverty. But the risk assessment piece and the database that went with it was largely lost. And we recognized that that was likely to happen even though the health plans do claim to be risk given, they haven’t really gone very far down that path.
The same time we’d done a study in Pawtucket, Rhode Island, little Pawtucket that showed within our family planning programs there was a risk business in pregnancy testing, about half of the women who came in were pregnant. They other half were not. But the more important thing that Bryan, Jack, and Larry Cullpepper showed was that of those who came in had a negative pregnancy test, over half of those were back within less than 12 months and had a positive pregnancy test but we clearly were in touch with women in the preconceptional period.
What were we doing about that? Most of them were uninsured. Most of them weren’t seen again until they came back for another pregnancy test, well, with luck they took some family planning but we weren’t doing anything much about all of the other things we learned about their health. So we set up what we’ve called the Women’s Health Screening and Referral Program in Title X, partly to compensate for the loss of the old prenatal risking program, but partly to take advantage of this earlier preconceptional opportunity that had been just put right in front of us, better to reduce unintended pregnancies. Most of these women had not been intending pregnancy. To improve pregnancy outcomes, to identify gaps in community services, I’ll talk about that in a minute, then to try to work on this long-term strategic plan, to create a risk responsive continuum for women independent of pregnancy.
A lot of these women had no obvious or at least stated intent to be pregnant anytime. So it wasn’t just about improving the next pregnancy. It was about their own health. What eventually became a 21-item questionnaire done in the waiting room, regrettably people still spend much too much time in waiting rooms, but we try to make it useful. And while they’re waiting for the results of their pregnancy test, usually, it’s voluntary. It’s billed to Title V. If the woman doesn’t have coverage, we pay for it. We pay for the test and we pay for the completion of the questionnaire and referral and it becomes a very early prenatal risk assessment if they are pregnant or a preconception assessment. And as I say, we put in some modest incentives to the providers to make sure that something useful happens. Okay.
Now, if you take your handout, those of you who were early enough to get one, the black squares. On the back is a primitive sort of pilot version of the women’s health screening and referral protocol. We’re in the process of revising it and upgrading it and making it electronic and all kinds of other things, but at the moment you can see the questions. The 21 items on the left get really quite good responses from the women we see. It’s in a couple of languages. And the one on the right, if you fill it in and demonstrate that these referrals are actually made, you get another 15 bucks from us.
So we do five or six thousand pregnancy tests a year. The preponderance but not all maybe something like 70 percent of the women do complete an analyzable women’s health screening program, a lot more fill out parts of it, but have been left out for various reasons because it wasn’t complete. And these are the kinds of results that we’ve been seeing for a representative recent year. We’re no longer, I’m proud to say, having about half of the women positive pregnancy test. That was embarrassing in a family planning program. We’ve got it down to maybe 40 percent. Of those who had positive tests regrettably, two thirds are still not intending pregnancy and here you are in the program that’s supposed to help with that. They have told us consistently that the, if they are pregnant and they often don’t know when they’re filling out the form, they would plan to carry the pregnancy to term with some modest percentage not, but almost all do.
About what, a little over 10 percent of the women responding are less than 18 years old and they’re even more likely to be unintended. Only about half have insurance when they come to us even in a very highly insured state. These are young women who are relatively low income and even if they’re eligible, aren’t insured often.
The negative pregnancy tests, the ones we really want to talk about here. Again 12 percent report they are trying for pregnancy. That’s worth remembering that that’s the other way women use a pregnancy testing service. There are women who want to be pregnant and when they think they might be, they want to have it confirmed. So they come to us and we haven’t, can’t assume that that’s a problem.
A higher proportion of adolescents, teenagers in this group and five percent of them are trying to be pregnant according to their own reports, and interestingly, a higher rate of insurance among those who are not pregnant, than among those who are. Nearly two thirds of those are covered.
It’s quite productive in terms of flagging for significant sort of traditional issues you look for. Fifteen percent or so tell us about significant medical and health problems, about the same, previous depression or mental health problems and the proportion is higher again among women who have negative pregnancy tests, most of whom don’t want to be pregnant soon.
Talking about sort of the nitty gritty OB type stuff, significant proportion know they either have already or have been exposed to significant sexually transmitted diseases. A lot have previous serious complications of pregnancy and a surprisingly high proportion have a serious bad pregnancy outcome, not just a little bit of low birth weight.
A lot are smoking, regrettably. We’ve worked really hard on smoking. We’ve brought it way down. I guess the good news is that it’s somewhat less likely among the women who turn out to be pregnant than the others, but there’s still lots of room for improvement there. And a load are exposed to tobacco, even though they may not be smoking themselves. And a very high proportion, tell us they’re using drugs and or alcohol, mostly alcohol, but we consciously blur that so we don’t have to report them to DCYF.
Social support and issues of poverty and such are again a significant concern. We have a very basic little question in there but it turns out to be quite stable and actually when you probe and do home visits and the like, you discover that it’s pretty valid. A pleasingly high proportion are connected in their communities and someone to rely on themselves and especially the teenagers. Ten, 12 percent have significant, you know, nutrition, shelter, transportation, poverty, community depletion type problems that they’re struggling with and a distressingly high proportion tell us that they do feel threatened or abused in their current or recent life situations and that that’s an issue for them.
So, I will stop there but tell you that we also have a good deal of data from the referral arm of all of this and have made some progress although some frustrations as well. We have greatly increased the access and have support for folic acid, for smoking cessation programs, quick paths into substance abuse treatment and domestic violence kind of responsiveness. And we’re revising all of this now with ACOG and a cast of thousands, maybe not quite as bit as California’s to not only update some of our items and the tool and make it computer interactive but to move back into private practice in community settings.
When we first set this up, we actually used it on a pilot basis in a number of community private obstetrical practices. And it works fine and doesn’t produce as high levels of positive response, but it turns out to be quite a useful tool there but then for various reasons, with budget cutting and the like, we backed away and went back just to the community health centers.
We’re now thinking of trying to make this a statewide tool used in all primary care for women environments. We believe the pregnancy test is still an excellent opportunity and a relatively low cost and hassle. It does elicit a lot of information. It’s not completely sensitive but it is pretty sensitive. It’s a very useful tool in a Title V environment to estimate and track your work on illuminating barriers, building new capacity for the system to perform and respond to these needs. You do need to reinforce it. Endorse it professionally but also reinforce it with cold cash, a little bit of an income stream for the practices if you want to keep it going. And it helps to describe the picture of care or a lack there of for uninsured women, at least in our environment.
We’d be happy to share it with any of the rest of you who wishes to go that way but give us another couple of months and you’ll have a much more modern version than the one I put on the back of the handout. Thanks.