HRSA/MCHB 2005 FEDERAL/STATE PARTNERSHIP MEETING

PUBLIC HEALTH ACROSS THE LIFESPAN

Translating the Findings from Child Death Review and Injury Prevention Planning

THERESA COVINGTON: Good morning. Can you see me over this computer? Sometimes I'm like way down there. Stephanie mentioned her four Ls. I think of a big L for Stephanie for leadership. I never heard your L thing but I like it. She's helped as we have grown from a brand new initiative to I think hopefully being something out there that can really help provide support to the states.

Since our time is cut short, I'm going to talk really fast, I hope, and kind of whiz through this. I just want to give you an overview real quick what fatality review is, mention quickly some of the other major fatality review processes going on in the states, and talk to you about where the states are right now with child death review.

All of the fatality reviews that are happening around the country have a common goal. That's to prevent fatalities by looking at the deaths in a comprehensive way so that you can understand the risks that are involved in the deaths, and then using that understanding to formulate prevention strategies to prevent other deaths. I call it elegantly simple. There's not a lot of magic to it.

There's some guiding principles that sort of inform our work. One is that we all recognize that the death is the sentinel event, but it's really a marker for other kids and people that are at risk. So you're using the death as a powerful event. But you're really not doing this work just to try to reduce deaths; you're trying to reduce morbidities as well.

When you're doing reviews, you're really trying to make your reviews as broad as you possibly can make them in terms of understanding all of the myriad of risk factors that are involved in the deaths. So you're trying to look at the whole world of the child and the family.

The other guiding principle is that factors are so multi‑dimensional when you start looking at them in depth that it's hard to place blame at any one agency. So it's really got to be a multi‑disciplinary approach.

Another key piece of fatality reviews is that you're not focused on what went wrong in terms of placing blame but you're looking towards the future in terms of what can we do that's right.

And then as I mentioned, the best reviews have to be multi‑disciplinary. When I started working with a lot of states, still today you find reviews that are really sort of focused in one agency, where a state sort of feels like they own their review. It's within the purview of Social Services or public health. And one of the things I spent a lot of time doing is trying to get people to think beyond that, they don't really own the view it's going to be owned by a community or a group of state folks.

Child death review to me is a simple process of sharing information around a table but it's actually a very complex process of group wisdom and shared responsibility for getting things right. And that's where it gets a little complex, is when you start figuring out the shared responsibility.

Fatality reviews is really, let's skip that one. Just to sort of give you a sense of where we've been. In the '30s actually maternal mortality reviews was I guess the first type of reviews that were happening. And then actually occupational fatality reviews sort of took off in the '50s and continued through today.

FMRs came into play in the 1980s with child death review being a little stepsister of FMR. In the '90s how many of know about domestic fatality reviews or have them in your communities? Anybody? They're really kind of, they're moving quickly across the country. A lot of states now have laws for domestic violence fatality reviews. In the last few years we've been getting calls about doing elder abuse death reviews.

What the reviews really are about is just getting a bunch of folks to the table and the core groups usually include folks from investigation, which is law enforcement, coroners, medical examiners, children's protective services and Social Services is almost always at the table. Healthcare is key, and that includes public health, mental health and the private sector, pediatricians, hospital staff, et cetera, et cetera, the broader you get it the better you're doing. It includes first responders that would be EMS and fire. Persons from education. People from the prosecution end. Not only to help move action where people can identify that crimes have been committed, but a lot of prosecutors for child death review serve to sort of use their bully pulpit to push prevention initiatives and strategies to keep kids safe. And most teams will end up with advocates. We did a check to figure out what the average team size is for a quality child death review. Around the states, it's anywhere from 20 to 25 people usually form the core of a good child death review team.

Support for reviews, it varies across the country, but most places now have supportive statutes and/or administrative rules. Almost everybody has some form of confidentiality provisions. You need some funding at least to help get teams up and established, about you I don't think you need a lot of funding to keep teams running.

And you need, of course, staffing and you've got to identify the loci of authority for where the teams are going to operate out of.

I think what we've seen across the years is a real movement away from having reviews serve only as investigative bodies because that's for child death review that's where they started. They were really based in child maltreatment arenas, looking at maltreatment deaths to try to figure out who did what to whom and how are we going to better identify perpetrators, to moving towards providing services to families and I think where we are at today is that reviews are much more focused on prevention. Using our understanding of what went wrong to try to prevent deaths and that really is true across all of the different types of reviews going on.

I think domestic and elder abuse reviews have a little bit further to go. They're still sort of stuck in the investigative piece, but they're getting there.

We sort of have a model that we try to push when we're doing reviews is that at every review you go through a series of questions. You try to figure out what can you learn from the investigation itself. Not only do to improve the investigation but gather better knowledge to help you understand what went wrong.

When I worked with teams that are sort of new, and they haven't gotten this quite right yet, they spend a lot of time, sometimes even more than a year improving investigative systems, because without good systems you're not going to have good information coming to the table. We've really found that to be true when we've looked at sleep‑related deaths across the country. I think death review has really had a profound impact on bringing information to the table that has guided us and Mary is going to talk quite a bit about that this morning.

Another thing that happens at reviews is you try to figure out what kind of services families need, and children need and the community need. You also are looking at the major risk factors. For me that's where the rubber hits the road. By understanding that you can start looking at systems, agency policies and practices that need improvement and you can start focusing on prevention.

And we never ‑‑ we always tell our teams never to leave a meeting before you figure who is going to take the lead to implement the recommendations that come out of each of the case reviews. I call it uncovering the layers. That's really all you're doing at a review, people are coming to the table sharing everything they know about the death event and the life that played out prior to the event to sort of chip away at the circumstances so you can really kind of, with he call it finding the golden nuggets so you can do something with it.

I just wanted to point you to some of these other fatality reviews, the CDC runs the Face Program, which is an occupational injury review, and they have quite a few states that are actively participating in this. You can go to their website. Any time a review is done they actually submit a formal report that they post on the web based on the state. But I've been able to find quite a few reports of children's deaths that are occupationally related on their website.

Another site is, and you guys have all these in your hand outs that's why I'm going to whiz through them. The National Center for Domestic Violence Fatality Review has their own website. You can go there and find information about your own state's domestic violence fatality review programs. We're trying to do this next coming year, we're going to try to meld some of these review programs so we can all sort of be speaking on the same page and at least help be more efficient in the different states when they've got multiple reviews. And elder abuse death reviews is really pretty new. There was a report issued on elder maltreatment abuse, and as a result of that, in the Elder Justice Act, there was some guidance directing the federal government to provide support to the Department of Justice for doing elder death reviews.

A number of states are just starting to pilot this, and there will be a manual out on how to do elder abuse through the Commission on Aging. I left you the web page so you can get some information. But they're pretty new at this. The woman on the left, Diane Point is actually in California providing support to a number of death reviews there.

Maternal mortality, and I'm going to skip through this really quick, too, are usually more medically based, they're much more located within state health departments and they're much harder to get information on. And only I think right now 25 states have them, but if you want more information on that you can also contact the CDC for information.

And then Ann's here. Where are you? Ann (inaudible) is here. The Fetal Mortality Review Program. How many know about FMR? There's 240 FMRs, 22 states. The difference between FMR and child death review, this is typical differences, is FMR typically does a medical case abstract in detail, the home interview and they deidentify their review. So there's a little bit of a difference there over child death review.

And this is their web page where you can go to get more information. I want to focus on child death review. 53,000 plus kids die every year through age 19 in the U.S. that's about 148 kids a year a day. Half of those kids are infants. 25% are adolescents. And child death review, what we try to push with our child death review teams is to try to review as many of those deaths as you possibly can at the state and local level. That's a lot of deaths to review.

Many years ago, what was it, 1993? That does seem like a long time ago. There was a recommendation that came out of the Bureau to try to provide further support for child death review. Child death review was sort of growing. It was coming out of the child protection arena. States were doing child death reviews but they were primarily focused on abuse‑related deaths. And recommendations came out of this work group that said if you're going to be doing reviews, let's try to increase the focus from just maltreatment to other deaths that are preventable. That's where a lot of states have moved since then.

Where we are today is that we have teams in every state except Idaho. 16 of our states have state level teams, which means they're actually doing reviews at a state level board kind of group, and they're not really doing local reviews. But the good news is that the rest of the states, except for two, are doing local reviews. I think that's good news, because I'm a real believer that the best reviews happen at the local level; you have better information, folks that can take action at the local level; and you typically are able to review the deaths as soon as possible after the event occurs, which gives you better information.

Two states don't have any state support and they're only doing local reviews. 34 states now have statutes that either mandate or permit child death review. Most of those statutes cover the confidentiality provisions, access to information. They address things like many of those legislations require if you're doing reviews that you have a state advisory board that issue recommendations and an annual report to your Governor or Legislature. So there's a number of things that would be in there. Most of the states describe who should be on at a minimum a child death review team, et cetera. And 38 states currently have written protocols for child death review and 28 states now have advisory boards that review local findings and make recommendations.

And 39 states produce annual reports. What I think is really exciting news is 37 states now have really moved to a public health model using prevention as their primary purpose and expanding the reviews to a much broader category of deaths.

Our health departments take the lead in 22 states. Followed by 14 states with Social Services taking the lead. But in the last year we've had three states where they've amended their legislation to move child death review out of Social Services into public health. Texas being the last and most current example. I think that's great news from a public health person. I don't know if Social Services likes it. But actually I think they are supporting it, because they really like the broader look for child death review as being more of a public health approach.

The average state budget for child death review is 116,000, but not everybody has that. There's only a few states that have a lot of money. Most of us are operating at about 100 and a little bit less and only eight states are using Title V Block Grant funds to help support child death review. 40 states are currently reviewing all types of injury deaths. 13 states review all of their injury deaths for kids 18 and under and 12 states are now reviewing all of their natural deaths, including their natural deaths of infants.

We have a long way to go to get our states to do a better job looking at infant deaths, especially as in parallel with FMR or where they don't have FMRs in place. We have a lot of work to do there. I notice the teams shy away from doing the perinatal related deaths because some of the medical complexities scare folks away, but we're trying to get them to do a little better with that.

All the states go up to at least age 17. The one state that doesn't, goes up to 14, so we're doing pretty good there. This shows you where the states are at. The states in blue are reviewing at least the nonnatural deaths, which would be accidents, suicides and homicides and undetermineds. The yellows are still primarily reviewing deaths of kids due to child abuse and neglect. The states in red are transitioning from just child abuse and neglect as to reviewing all injury deaths.

We had a Healthy People 2010 objective that had been in the developmental phase, and this month they changed it from developmental to I guess official. And it's an objective that says to extend the number of states to 50 in Washington D.C. where 100 percent of the deaths of kids ages 17 years and younger that are due to external causes are reviewed by teams.

We are pretty excited about this. And this week they actually are trying to add a clause that would say "and review all sudden and unexpected infant deaths in all of the states in the District of Columbia." We're gathering data. We need to be able to have baseline data by the end of this week for them to add that, but I think we're going to get there. Our state child death review coordinators throughout the country are incredibly responsive. I sent them an e‑mail last week saying could you come up with this data; and when I left my office yesterday I already had responses from 32 states. Amazing when you consider that a lot of these coordinators are unfunded and they're doing this as part of another job.

I want to talk about our child death review reporting system that we developed this year. One of the things that we do as a center, we're only a center of two and a half staff persons. And we really rely on our CDR team of coordinators from around the country to donate time, energy and commitment. And some examples of this is we had 40 persons from 19 states work to author a child death review program manual. We have regional coalitions in the west, the northeast, the southeast and the Midwest. Where folks get together via conference call every few months and they talk about their programs.

We had 46 folks participate at our first meeting of CDR coordinators, and then we had 30 persons volunteer and they spent two years of about weekly conference calls about an hour and a half two hours, helping develop this multi‑state child death review reporting system. What we found is in terms of child death review reporting, the reports that folks were doing, the reviews were leading to numerous and significant prevention efforts, and we found that 42 states had reporting tools. Many required by law. But there wasn't any consistency among any of those reporting tools in the different states. What happened is that when people would do a case review they'd actually fill out this form in their own states. And some states were doing nothing with those forms. Some states, my state being Michigan as an example, really collected all that data into a database. We issue an annual report every year. We can do risk factor analysis and all sorts of fancy stuff but not everybody was doing that. So we got 18 states together. And what we did was we designed one reporting tool that was instead of being a minimal data set we call it a maximum data set because we really tried to identify all the questions you would want to know on the deaths of these kids by cause and manner.

Then we built it into a web system, and this is where we're at right now. We have 12 states that are currently using it. By the end of the year we'll be up to about 18 states, and Texas is going to join us in January. We're still a pilot, but it's a web system. It's customized for every state that signs on has their own log in, their own data pages, et cetera. But everybody is using the same data elements.

This system allows folks to enter new cases, search for cases, create standardized reports. There's going to be 32 standardized reports based on the data that comes into that. So folks don't want to do data analysis they don't have to. And then folks are going to be able to down load their data at either a state and/or a local level.

This is just what Pennsylvania's welcome page would look like when they log on.

The system has a lot of sections, including information on the child, the primary care givers, the site where the incident happened, the type of investigation that happened that takes place and then there's, for every cause of death there's a whole lot of questions that we put in there that all the data elements are directly tied to whether or not, to identifying the risk factors that we felt that there was something where you could intervene to make a difference. So, for example, under motor vehicles there's a lot of questions about restraint use, type of driver, age of driver, teen driver issues, there's a lot of questions about whether, you know the graduated licensing stuff and whether they were following the requirements, et cetera et cetera et cetera. So it's really, it's a risk focused and a prevention focused reporting tool.

Anybody that wants information, more detailed information on that can get it from me and I can also log you into test sites if you'd like to look at this for your site. We're currently kind of trying to ‑‑ we've got a lot of states doing the pilot. It's probably more than we probably should have, but it was hard to say no to folks that really wanted to start participating in this. We're going to be done with the pilot by next winter. And ready to go hopefully to anybody that wants to participate in '07.

Just want to give you one more thing before I end. We've gotten, since we've had the center up we get a lot of requests on a pretty regular basis from national organizations wanting data. They all think that we have the data. We don't have the data yet, but we can link people to data. Two examples of this is National Safe Kids wanted to have drowning prevention be their Safe Kids Week, but they couldn't get any data on drownings, because the death certificate didn't have a whole lot to say. So they went through our center and we linked them up to the states and they ended up getting data from 19 states, 450 or so drowning reports that had a lot of good information. And as a result they were able to produce a report called Clear Danger that has a lot of recommendations on preventing childhood drowning. The next example is kidsandcars.org; the Highway Safety Bill has in their requirements on changing power window buttons so that when you put your elbow down on a power window button the window can't go up. You have to have a button where you have to pull it up. One of the ways they were able to do this, they went through our child death review teams and within a year they found 80 deaths of children who were strangled in these power windows. No other data source that was able to link them to those deaths because they weren't reported in the highway reporting systems.

Where do we go now? We want to continue to build state and local capacity. That's what really our core is about. We want to help teams link better with Title V with needs assessment and with state injury programs. We'd love to try to find some better funding streams for sustainability for state programs. We want to try to do a better job capturing results from reviews. We know across the country that amazing things are happening at both the local and state levels as a result of reviews but we're not doing a good job capturing that. Obviously we want to translate all of that into national policy and practice. We want to do better linking with current other review programs that are out there. And help link organizations to state and local reviews.

And you can get this off my web page.