AMCHP 2006 ANNUAL CONFERENCE
EARLY CHILDHOOD: BUILDING THE FOUNDATION FOR LIFELONG HEALTH
March 4-8, 2006
SANDRA J. FRANK: Before we get started, do we have any medical examiners in here this morning? Any people from the ME offices? Folks from state programs, SIDS, and other infant death programs at all? Okay, and give me an idea of what state you’re from?
WOMAN: We’re from Arizona.
SANDRA J. FRANK: Arizona.
WOMAN: Massachusetts.
SANDRA J. FRANK: Massachusetts, okay.
WOMAN: Maryland.
SANDRA J. FRANK: Maryland. All right, good to see you.
WOMAN: Iowa.
SANDRA J. FRANK: Sorry?
WOMAN: Iowa.
SANDRA J. FRANK: Iowa. Okay. And is this something you’re seeing in your own states?
WOMAN: Yes.
SANDRA J. FRANK: Yes? Okay. You can leave that up there and you can think about that while I talk. I want to start first of all by saying, I’m realizing how very fortunate we are at Michigan, with the resources that we have, we have an MCH epidemiologist who’s not only a physician, with Fiolanda, who’s not only a physician, but understands the application and implications for communities. And we also have a great group of people who work with PRAMS. Great friends, good relationships there, who are helping and have helped and continue to help to pull this together. Our CDRs, the PRAMS and the epidemiology, the vital stats sort of give us the science. You know. ’Cause you got to have science. The CDRs give us the community snapshot of what it looks like in the locales. We’re here on the last day of the conference, it’s the last session, and I’m the last speaker. So, for clarity possibly for myself, just as much as for you, I want to be very straight and very, very clear in what I say. And I’m going to start by saying that everything we thought we knew about SIDS has changed. Okay? Everything we thought we knew has changed.
The statistics you’ve just heard probably confirm what you’ve been seeing, probably what you’ve been suspecting for some time. Michigan may be a little bit ahead of you on it, but we’re probably all eventually heading in the same direction. We’ve had the opportunity to translate this data, and like you’ve just heard, we’ve had the opportunity now to translate this into programs and policy addressing infancy of sleep. Michigan has indeed officially endorsed an infant safe sleep policy. It’s been a very lengthy process. I don’t want you think we went in and boom, it happened like that. It’s been a very lengthy process, it started in 1999. Okay? In 1999, we started to get this data from vital stats. And we started seeing these drastic decreases in SIDS, but the fact that post-neonatal rates remain the same. Something was going on. It was in 2004, five years later, that our health department convened the Infant Safe Sleep work group. So, I’m saying that because I don’t want you to be discouraged in your communities thinking, well, you know, this isn’t happening immediately. It won’t. It may take five, six, seven years for these changes to come about.
The report that we have, the Infant Safe Sleep Report, and I’m hoping you received a copy of it there, the Infant Safe Sleep Report does outline an Infant Safe Sleep Campaign at a state level. The MCH director and I were honored to be able to present this to our governors children’s cabinet, as you’ve heard, and it has been endorsed by the children’s cabinet and the governor, meaning that Michigan has an Infant Safe Sleep Policy, unofficial policy. One of the consequences of that cabinet endorsement is that all four of our human services departments now embrace this Infant Save Sleep message from the width, breadth, the depth of their departments, are taking safe sleep language, to make sure their tools, their resources, their materials, their language with their clientele reflects infant safe sleep.
And now the consequence was that we were rewarded finding. And I know in these times, believe me, Michigan maybe more than anyone, with our economy, we know how tight funding is. But we were able to scrape together 250,000 from healthy Michigan Fund—that’s tobacco money, folks, for an Infant Safe Sleep Campaign. A work group again was assigned to help us outline the details, and the funds were channeled through Tomorrow’s Child Michigan SIDS. We are the Title V SIDS and other Infant Death Program, a non-profit, 501 C3, we get to wear both hats, which means, good news, we get to fundraise. And that’s going to be important in keeping these campaigns alive. We are the primary resource for Back to Sleep and now Infant Safe Sleep in Michigan, and the other thing that blends here is that we’re the central referral site for all those great services. So when an infant dies, we get the description and many times the photographs, folks. Next time I do this presentation, I’m bringing the photographs. They are horrific to see. But the grief referral forms tell us, and give us important clues about the environment in which that infant was sleeping, immediately prior to its death.
We’ve heard about the data, and it is critical. It is essential. And what happens is once you hear the data and you see these photos, you realize that the number, an incredible number of infants who are dying in unsafe sleep environments, and you go, “This is preventable. We can do something about this.” And once you know and once you see this data, and once you see these deaths scenes, these photographs, you are morally compelled to do something. You know you can educate these families about Safe Sleep environments, and likely save infant lives. Our philosophy was as we approach this, you have to give the families the information. This is a volatile issue. No, we all know it’s an emotional issue for many folks. But you have to give the family the information. And you have to give their caregivers the information. We know that ultimately the decision is the families. The parents. But you have to tell them. And because we do the grief services and we listen to these families, I hear time and time again, “But nobody told me.” Well, we’re going to tell them, and let them make an informed decision about the way they will sleep their babies.
Our policy, as we worked for these five years, was to provide consistent culturally competent information about unsafe sleep at every possible contact site. Physician’s office, at the prenatal visit, hospital delivery, well baby visits, through Medicaid, private insurance, WIC, childcare social services, MSS, ISS, home visiting programs, whatever. Work to get a consistent message. And our strategy, what we learned from Back to Sleep was that we needed to have systems change, permanent, institutionalized systems change. A public education campaign comes and goes. And you’ve got $2 million into the campaign, and when your airtime runs out, you’re airtime runs out. You have to have the systems change, and that’s how we approached it. The other thing is we knew that there were countless academic works on community service and doing community work. But in the real world, if you start talking the language of academics, they disengage immediately.
In this work in the real life, you are required to have this professional understanding process organizational behavior community change. You got to have that. But, and if you don’t have that underlying knowledge, you’re not likely to have that systems change. We also learned marching in and delivering the lecture series just doesn’t work either. So the gift is in translating the knowledge, and the fabulous data that we have, translating that into community work and policy change and programs that reach real, live people. I’m going to quickly scan through some of the slides here, outlining the steps that we took. It was a complicated, long, delicate process. Took five years. And it’s ongoing today because we’ve just for instance just had the AAP recommendations, which tweaked a little bit the final, the language that we use on Infant Safe Sleep. We also just received this PRAMS data, and I think we have another set coming 2004, telling us we need to focus on young black women, who are of childbearing age, or with children under the age of one.
And we also know from PRAMS and our other data, that we need to be focusing on professional associations and on the med schools and nursing schools. Because these are our leaders of tomorrow. And you know what? They have to believe. If they don’t believe, they sabotage it. And they don’t do it intentionally. It’s because they don’t know.
The takeaway message, I know I’ve got to get this upfront. We have, Michigan has created a unified Infant Safe Sleep Policy and recommendations endorsed by our governor, the children’s cabinets. We are institutionalizing the message, establishing systems change. And I’ll have some of that for you later. We also, important, unlike Back to Sleep, we have formal evaluation and ongoing assessment keyed in from day one. So there are going to be a lot of publications, data, and more reports on Michigan’s initiative. I’m going to spend just a second or so on process, summarizing the campaign, and driving home, you have to have the evaluation. If there are any people who do this work, besides the two or three here in front, you know that if you don’t evaluate, you don’t know if you’ve made a changer had an impact at all.
The data sources you’ve talked about, I don’t mean to suggest that these are in any way exclusive, there’s a source in here that you ought to be looking at. Your human services, your social services are required to report child abuse and neglect deaths. That’s another source of data on these unsafe sleep environment deaths. And they are wonderful allies for us because they are substantiating, validating what we are seeing out of vital stats and CDR. You see some of the other sources there, licensing data, we’ve got childcare licensing data that’s very helpful for us. Your death scenes are going to be important, and don’t ever forget the parents’ stories here.
The national studies were important for us, because in ‘99 through 2001, we didn’t know if we were unique in what we were seeing in Michigan. Was there something going on, some sort of an aberration around our medical examiners or how our families were sleeping, or our ethnic mix in Michigan? It was the national studies that really did clarify for us and validate for us that it wasn’t us. It was happening nationally. And if you take a look at some of these dates, look at M.J. Shares. And many of you may know M. J. Shares and Jim Kemp. They’ve done a lot of work in this area. They’re looking at ’98, 2000, you know they’re not look—they’re looking at data from mid-‘90s, right, to do the study in ’98. Even then, the data was there, we weren’t looking. It was Back to Sleep that gave us permission to look at sleep environment, folks. It was Back to Sleep.
CPS, and you know these studies, in fact I think that Yolanda and Melinda did touch on them. CPSC had a study, and AME’s media advisory, the campaign from CPSC, AAP, their first policy was in 2000. Lots of articles in pediatrics about unsafe sleep and practices related to infant death. Two thousand two came some really key stuff for us. Another article by M.J. and Jim on Safe Sleep, an announcement by CPSC about an Infant Safe Sleep campaign. That sort of in Michigan kind of gave us the heart and the courage to produce our first, Tomorrow’s Child, to produce the first infancy sleep materials. We did it with some trepidation because it wasn’t like Back to Sleep where we had a national, you know, we had a national model to follow. We knew we were pushing an envelope and sent those out, those brochures, and we have not stopped since. We’ve sent out over a million of those.
And, let me just briefly, you know this, you know how you go about doing this. You analyze your data. We found our post-neonatal had not changed and that risk factors were primarily sleep environments. And our conclusion was that we were beyond SIDS and we were beyond Back to Sleep. That’s what I meant when I said everything we thought we knew about SIDS has changed. We have the big element of preventability, and we also have the fortune of having gone through the Back to Sleep Campaign to inform us. And I know we learned a lot from the Back to Sleep. And we did change our campaign to be Infant Safe Sleep in Michigan, it’s the Infant Safe Sleep Campaign now.
Changing sleep practices, what we learned from Back to Sleep was that knowledge did not change behavior. Part of this project we’re doing, funded by the Skillman Foundation and many others, is to going to the hospitals in the inner city of Detroit—there are three—and we are doing clinical audits, okay, this is the science behind what’s going on. We are doing clinical audits prior to beginning any Infant Safe Sleep initiatives. Our clinical audits are showing in some of the hospitals, only 52% of those babies are on their back. Resonates with what you’re hearing here from the data. Inner city, the hospitals I’m talking about, their census is primarily African American. Fifty-two percent of the babies were on their back. The remainder were on their side or stomach. Every one of those hospitals reported 95, 98% junk in the crib, junk in the bassinette, junk in the layette. Lots of data coming up, and I think we’re going to be able to publish this by the end of 2006.
Three inner city hospitals, only three serving the city of Detroit. We understood that we had to change attitudes, values, practice, and behavior of their caregivers, as well as the families, and that it was a process. There is lots of science behind this too. You all know from nursing studies. Nurses have a tremendous impact on Back to Sleep. They also are role models for their patients.