AMCHP 2006 ANNUAL CONFERENCE
EARLY CHILDHOOD: BUILDING THE FOUNDATION FOR LIFELONG HEALTH
March 4-8, 2006
RUTH PEROU: Good afternoon. Thank you all for being here. I know this was like a last minute addition, so I really appreciate you showing up, and I also want to thank AMCHP for inviting us to present on this session. And also the Commonwealth Fund for supporting this session. My name is Ruth Perou, and I'm the child development studies team leader at the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention. Quite a mouthful. What we'll be presenting on title of the presentation: Start strong, speak strong promoting developmental health for all children. It comes from CDC has new initiatives looking at health through the life stages and we're talking about, for example, infancy, childhood, adolescence, adult and later adult, they didn't call it middle age or older, they call it later adults because of let's say the ages of some of the people involved in the committees. Really later adults, but it's interesting the euphemisms that come up when you are involved with the committee. I'll talk about later on the importance of getting everybody involved so their point of view is always reflected in whatever you decide.
But CDC's new initiative really looking at the life stages and the important thing is to start strong and stay strong throughout the life stages and how relevant it is that if what you do early on, what you do in infancy actually prenatally, your maternal grandmother, how that impacts your health and outcomes and life outcomes.
So I'll tell you a little bit about background why CDC is involved in this why it's a public issue in terms of developmental mental health and highlight a couple of activities we have going on in this area, specifically some research activity on developmental screening and screening for autism, and then I'm also going to introduce the slides of another speaker who unfortunately couldn't be here but an initiative in the state of Connecticut called Help Me Grow, which shows you how you can do at a state level just changing all systems to ensure you promote optimal child development.
I'm at the National Center on Birth Defects and Developmental Disabilities, and our mission is to promote the health of babies, children and adults and enhancing the potential for full and productive living. I mentioned the term developmental health earlier. It's a term that actually we coined. It's available on our website. But we defined developmental health as the state of being mentally, physically and socially ready to learn to form positive social relationships and to embrace the opportunities challenges and roles and responsibilities appropriate to one's age.
So even a lot of what I'm talking about here is for children in adolescence, it really is throughout the life span.
Well, why is this issue so important? I feel like you all may feel like you may be hearing this over and over again throughout the conference. It was funny I was listening to Jane earlier and hearing comments about Ed's presentation. I'm like I'm going to say all the same things so maybe this is how you learn you keep hearing it over and over again. But why is promoting optimal development so important? Well, we know that the future health and development of our country's youth is vitally important to society. It's important to healthcare providers, to public health providers, to researchers, but specifically to families and their children. We also know from research and the literature shows us that the critical foundation for later outcomes and later life outcomes, later health outcomes are really established early on.
I don't know if many of you are familiar the CDC adverse health studies that really showed that individuals exposed to four or more adverse childhood adverse events are at risk later in life for things like cardiovascular cancer and also mental health issues and some health risk behaviors, also more likely to start, say, risky health, risky behaviors early on like smoking or drinking or substance abuse.
Again this whole issue we've been hearing throughout the conference is that failure to invest time and resources during these years may have immediate and long‑term negative impact. Those impacts will be reflected in many sectors of society and in many systems. I mean you'll see it in foster care, see it in special education. You'll see it in emergency room visits and so forth. And in Social Services. So this is a very important public health issue.
What's the impact? We know that 12 to 16% of all children less than 17 years of age have a developmental or behavioral disorder, including things like autism or attention deficit hyperactivity disorder. We also know these individuals have at least one additional co‑morbid condition so they don't exist in a vacuum. They have multiple issues and multiple issues that need to be addressed by multiple systems.
Yet, with all this knowledge only about 50% of children are being identified before beginning school. Another important note is that when doing surveys of parents, about 40% of parents are saying they've had at least one concern about their child's development that hasn't been addressed.
Again, with respect to impact, and this is relevant for policy makers, economists, people running systems, is that if we're not promoting developmental health and if we're not focusing on early identification detection and intervention, we know that these children, these individuals are at risk for overall poor health status, poor school performance in terms of special education or repeating a grade or discipline issues. Poor social outcomes. There are higher rate of integration with the juvenile justice system and also personal and societal costs. Going back earlier we want to ensure everybody is reaching their full potential. Contributing to society and that they're able to benefit from what society has to offer. And again I want to keep hitting on those issues because we traditionally hear from CDC about like what is the health outcome and specific to a disease, but we're really looking at these broader issues. They do have an impact on our lives in promoting the quality of life of individuals and how well they function within society.
So we had a vision at CDC and really in order to optimize child development, we want to optimize each child's health and development to improving the practice of well child care, and one thing, and again the key is to detect and manage early factors that may lead to developmental delays or disorders, including things like autism. But the key here is the early factors.
So these are not just specific to the individual child but there could be like some familial factors we've heard about maternal depression, exposures to domestic violence in the home and things like that. We have to be cognizant what's going on within that family that may impact that child's development and health. Exposure to violence, children living in poverty. The other key thing is to promote optimal developmental practices within families and other systems that interact with youth. I think this is relevant for all the work we do together is that it's not just based within the family but it's multiple systems that are involved to ensure that that child is developing and its healthy and it's reaching his or her full potential.
And one of the areas that we looked to is in our partnership with the American Academy of Pediatrics, and also with family physicians, is looking at this whole key of developmental screening and developmental surveillance. Screening it's just a quick procedure to identify children who may need more intensive assessment or diagnosis. But if this were to be incorporated as part of the standard of care, not just in primary care settings, but with pediatricians but say child care settings, if this became part of, if people became more knowledgeable about children's developmental milestones we could be monitoring that and refer for services earlier rather than later.
With everything that we know, as you know, it's mandated that we conduct developmental screening through EPTSD. There's legislation for Part B and Part C and we're supposed to be providing all these services for children with developmental disabilities and in some states at risk for delays. Still with all that going on with recommendation by the American Academy of Pediatrics that this should be going on, there's still a lack of standard protocol for early detection of developmental disabilities and delays. In essence, there's not a consistent use of a standardized screening tool or good psychometrically appropriate screening tool which is the key. Lack of reimbursement for increased services. We heard a lot earlier about some challenges the states are going through like how do you pay for these services. There's limited training on child development and developmental milestones. That's a challenge for lots of professions not just pediatricians. I know you've been hearing this over and over again so I feel like I'm repeating myself, but these are like some of the major issues and challenges that we see that need to be addressed. This lack of connection to community resources, lack of monitoring system, which is again it's a keystone for CDC.
There's still a lack of evidence‑based and valid data to show that this is an important issue for us to look at and that it's cost‑effective and that it's effective as a public health intervention. And of course within primary care practice there are all the issues of time constraints.
So our goal and looking at all these issues we realize there's not one easy fix. I mean initially when we were starting to look at this, they're saying if you're going to do any kind of screening and increase the rate of kids with autism who are being identified, why don't you just develop a tool kit, put it into the pediatricians office and everything will be nice, everything will be taken care of. And what we kept hearing is that there are lots and lots of tool kits and they tend to sit on the tool kit case and gather a lot of dust. But what's really needed is this whole systems change sort of like a paradigm change, that all these different systems really need to start working together to really address the issue of developmental health and focus on child development. We really need to make those systems more responsive to the family's needs. It needs to be a family‑centered approach. And we need to listen to families and communities. What is it that they need from these systems at the same time we need to bring in all these systems together, the community‑based organizations, the school system, Department of Education, the public health system, the healthcare system, how do we all start to work together so that we're all benefiting from addressing these issues.
And along the lines of state legislations and policies and federal laws and mandates.
So our approach at CDC really has been a multi‑prong putting the pieces together of this puzzle and looking at different areas that we could address to deal with these systems change issues. One of the first things we realized is that we need to raise public awareness and knowledge of the importance of early detection and intervention. Just how relevant that is. And also really bridging together this issue of child health and education and this whole concept of child development and child health. We know that development is so relevant. It's really ‑‑ it impacts all the processes in terms of health outcomes, but we really want to get that education out there. So once you see that, once that makes sense and you cannot separate them. If you're going to promote health and well‑being, you cannot ignore child development issues.
The other pieces are improving the practice of developmental screening. That goes along the lines of working with partners and organizations on guidelines and mandates and legislations, but also on educating providers and not just pediatricians but child care providers and any other kind of provider that's interacting with the family. Maximizing opportunities within the healthcare system. Here what we're doing is really testing and conducting research on potential model programs, potential systems of change within practice and within other systems that are working together to promote the child's health and we'll hear a little bit later from Lisa Young about the work they're doing in Pennsylvania in pediatric clinics to improve screening for autism.
Also talk a little bit about another project that we do in Kansas City, Missouri implementing the healthy steps model in Swope Clinic, again looking to see what we can learn from those programs so that can be generalizable and exported to other communities and other areas. And then after Lisa speaks I'll talk about the Connecticut work about Help Me Grow.
The other piece, and of course if it's CDC we have to monitor. Data is critical. And I think what I've been hearing earlier is the importance of doing all these things you know everybody agrees that yes in order to promote child health and well‑being, we need to be looking at early intervention, early identification, working with practitioners, working with families, anticipatory guidance, really looking at these issues but unfortunately there's still a huge lack of data out there to support some of these things and I think that's critical. So we're working with national surveys and incorporating more modules or more questions on children's development issues and on some developmental disabilities and on autism and so forth where we can really see what's going on to do surveillance that's necessary, but also do the surveillance of if you're doing developmental screening, does that really improve the outcomes for children?
Here are some of our activities. And one huge initiative that we have going on it's called learn the signs act early and I have some hand outs out here. So please take them. I don't want to take them back on the plane. Any how, they're wonderful hand outs and they're available to practitioners. You can order them from our office and use them, and we develop these really again the concept here is it's time to change the way that we think about a child growing and to focus on social emotional issues so that we tie milestones that you usually see, physically what's going on, people it's like they should be walking around 12 months and doing this at different ages. All these different ages you're expecting to see certain milestones, physical milestones. But now we're going to attach social emotional milestones. Oh look he's babbling at this age things like that or he's starting to speak so really that parents and practitioners and really society in general is aware about learning the signs and acting early. I mean these are developmental milestones that we need to be aware of.
And we started initially with pediatricians. I think we sent out materials to over 10,000 pediatricians either through direct mailing or at different conferences. And then the next step is really to work with child care providers and then the groups that we work with autism are also doing a public awareness, educating parents on some of these issues. But we've got a website with all of this information. It's got positive parenting behaviors. It's got milestones at different ages. It's even got like a quick developmental screener you can fill up on line to keep track of your child. And so there's a lot of really great information and we've got ten wonderful feedback from practitioners that they love this. Parents love this. It's available in English and in Spanish.
And they're just going like hotcakes. So if you're interested, please go to the website and you can request I think there's a little thing like this that you can put up in your office. So it has the little cards that parents can take. We also have more fact sheets that are available in folders and those two are available.
And, again, going back to those four pieces of the puzzle is really to improve developmental screening within our website we've cataloged current resources, information for pediatricians and ongoing projects that may be model programs that may be relevant to state and Maternal Child Health providers who may be interested in some model programs they could incorporate into their communities and then also doing some more research on specific programs. And again as I mentioned developing monitoring surveillance protocols.
I'm going to tell you a little bit more about one program in particular that we have. We actually got one year funding from Congress to conduct this study, and it's with Swope Healthcare Systems in Kansas City it's the pediatrics screening and intervention program. They have an existing clinic that's dealing with mostly low income families.
And what we wanted to do was to see, to really evaluate how do you incorporate developmental screening but not just developmental screening but a family‑centered approach on developmental health within community clinics. Then we're going to have a strong evaluation component to see how effective it is.
But as you can see, the overall goals for the project are the early identification of developmental problems, increased receipt of appropriate preventive healthcare for children and adolescent. Improved care coordination. What's nice about the Swope clinic is that it's a comprehensive clinic in and of itself. They have like WIC services right there within the clinic. So they can refer somebody just down the hall for some services. But if those services are not available within their clinics, they've also done the work to make the partnerships to other services within the community that can support some of the resources that they may need for these families.
Fewer youth with chronic illnesses. They also have a strong fiscal health component looking at obesity asthma and diabetes. Again the increased awareness of regular preventive care for children, there's an outreach they have what's called Health Ambassadors Program. What they do they go out and reaching into the community, they serve a community of about 44,000 individuals and about 47% of these families are just below the federal poverty rate. They're really wanting to ensure that more and more of these families are coming to the clinic and getting all the appropriate preventive healthcare services, but these health ambassadors they're going out and doing information health fairs, they're going door to door to try to bring more families into the clinic and ensure that they're receiving the appropriate services.
I mentioned earlier that it's a family‑centered approach. I think Jane mentioned earlier, all the factors that may impact a child health and well‑being. So we're doing maternal depression screening at one to two months for postpartum depression and we're doing at multiple ages developmental screening, during all the well child visits when they come in for immunizations, and we're alternating the types of developmental screening tools that we're using, the Ages and Stages Questionnaire and the parents evaluation of developmental status. What Swope had learned from their other clinics if you use the same screening tool over and over again even those these tools are valid to use at different developmental milestones, do it at six months, 12, 18 months, so forth that parents sort of like if they keep coming back, especially the regular attenders, they sort of got bored with the same screening tool. And so what they did is that they switched the screening tool around and got them more involved in it. And it's sort of, our take on it is that if it's a valid, psychometrically valid tool that's culturally appropriate and the parents are receptive to, it's fine to use whatever screening tool it's easier to incorporate into your practice. So they've used the Ages and Stages and peds with success.
They're also looking at 15 months, 18 months and 24 months really at more social, emotional issue, because what they found is with these families is that at those ages is when they come in to like oh, my kid's acting up my baby is acting up, what do I need? I need more information on discipline issues what can I do here? That's when they're really introducing more of the social emotional issue and they're also administering the modified checklist for autism in toddlers, and I think Lisa may talk more about that. But the key thing is maybe they'll do Ages and Stages or peds first and then do afterwards a more tailored screening tool that's looking at some of these issues.
The evaluation component is really looking at how many new families from the target area are we able to see. As I mentioned there are about 20,000 families that are not receiving services and we're hoping to get to at least 10% of those families with this one year study. Are we increasing the number of EPTSD visits and of the children coming in for the well child visit what percentage of those were we able to administer the EPTSD visit. For those that were positively screened, were they referred for appropriate follow‑up services? What percentage of the moms are being screened for depression. The effectiveness of outreach and getting feedback from providers. Is this something that's been easy or difficult to incorporate within your practice? Is it making it better. Are you getting good feedback from families? Do you feel like you're providing better preventive care, better healthcare for the families? And so we want to get some feedback from the providers too to see what challenges they were faced with. This has just been going on started in October but from October through December we're just preliminarily getting some of the data but they've already seen 550 families. And they've conducted almost 90% have been able to conduct developmental screening. So we're just getting the data and just starting to analyze it. But again we're hoping that this kind of data will inform if you screen at certain ages are the kids being referred and if they're being referred, are their outcomes better in the long‑term and is it feasible to start to incorporate this into practices.
I'm going to turn it over to Lisa now and then I'll come back.