AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
AMY SLONIM: Good afternoon and welcome. Let me just remember what I'm supposed to do. Oh, these.
I have the wonderful role today just to set the background, the foundation so everybody understands basically about the state of the nation as it relates to child death review. Child death review quite simply is improving our understanding of why children die and being the catalyst for taking actions to make changes based on that understanding. It affords the opportunity for both states, communities and the nation to take steps forward and to learn from these unfortunate incidents.
Child death review has changed dramatically over the last ten years. Its roots are really involved in investigative focus about child abuse fatalities. And in the past ten years, we moved from the investigative approach to applying a public health approach, understanding the risk factors of why this death occurred or why these deaths occurred and what we could do to make a difference to learn from these incidents.
so we -- Really now, the approach nationally is using a public health approach to understanding these deaths. If you had seen this map ten years ago, it would have been quite yellow. Today, you can see all the green that really prevention regardless of where CDR sits within a state whether in the AG's office or Social Services, prevention is the primary focus for the investigations.
Just to give you a general sense across the states what a scope of the review is, about half of the reviews take place looking at all causes. And initially as I said, it was really from child abuse. If we looked at this ten years ago it would not have been half the states were looking at all the causes. 48 states reviewed deaths through at least the age of 17 which is incredible. And states, the one area where there is still a great deal of variability is the timeframes that apply for a review taking place.
Critical to child death review is supporting or enabling mandated legislation. And the good news is that in 45 states there is enabling legislation. And just to get a sense of the scope, 11 states have only initiated this legislation in the last three years. When you think about legislation, what can it do for CDR, it really provides tremendous opportunity as it relates to all of these factors on the slide. For understanding and clarifying and having legislation behind what the roles are for the local teams and the State teams. To mandate the kinds of deaths that are reviewed, and you can see how we moved so if the legislation says it's going to be a public health approach and they look at all causes, then you have legislation behind and mandating what kinds of reviews you're doing.
Who is making up these teams? What is the membership of the teams in child death review. And very importantly, is there legislation behind the confidentiality that gives you great access and opportunities to better understand the deaths. And we will go into very -- you'll have a much better understanding of each of these elements as the panel continues.
So it gives you access to records, it gives you access to reporting out your results and it also gives authority to an agency. So the legislation is a critical piece, and it's wonderful that 45 states now have this enabling legislation.
One of the points I want to be sure to make is that CDR is very dependent currently on volunteers especially at the local level, and it varies in terms of the dollars behind CDR. And when you think that 45 states have enabling legislation and there's little funding, it's very important we stay focused on the few dollars that are currently, and I underline currently behind CDR. We are going to talk about ways that we can improve this situation hopefully over time.
There are -- have been traditionally three models of CDR. The first being local teams that review and you can see there are a few states that now have only local teams, and 37 states have combined local and state teams. So there are very intense local reviews conducted and state boards review the findings of the local teams and make broader based recommendations and are able to synthesize all the way across all the understanding and then in 12 states there are just state level reviews. But we are really promoting the local and state reviews.
So what are the objectives of a child death review? Certainly, it's very important to have accurate information and uniform reporting. That really expands the possibilities for what you can do with the findings and helps you to dig in most effectively to understand all of the elements that come into play behind the death. It helps improve the investigative systems, and you will see this loudly and clearly as Pat and Jim, especially Pat talk today. Ideally and hopefully, it improves services to both families and community to prevent future death.
a big piece that comes out of the local, the State and I would say national teams is building linkages and communication and it is certainly an area as our data collection becomes more uniform and standardized, we can only expand upon this avenue of building communication and linkages. And most importantly, and I've said this six times already, it helps you to understand the risk factors and the protective factors that come into play as we understand the deaths that have occurred.
And ideally, and again hopefully this comes into play more and more, as you can see we have 45 states with enabling legislation, it builds opportunities to make more institutionalized change through legislation, policy and practice and to prevent deaths, and certainly to improve the health and safety of children.
Child death review, really I think before CSI and Law and Order, put into play this uncovering of layers to investigate and to understand things that at face value may look quite different. And the example that's always very vivid in my mind was there was what appeared to be a car crash. Some teenagers were out on a joy ride during the day. It was a school day, they took a curve too quickly, the girl sitting in the back seat did not have her seatbelt on, she was ejected from the car and was killed. From face value, you would really focus in on the seatbelts, you'd focus in on the curve and what issues you could do to change that situation. But as the team uncovered the layers, they came to find out that she was not in school because the day before she had been raped. So she was with her brother who was consoling her, she was distraught and there were no support services for youth that were victims of violence. So what came out of it in terms of preventative activities were not only things related to the car, but building in support services for the youth that relate to these kinds of incidents. So it's the uncovering of the layers that are built in, and that is the essence of CDR.
As I mentioned, the team members are a critical part of what brings the richness to CDR. And this is the typical core membership that you can see here. It's everything from the fire and EMS to schools to healthcare to children advocates. And as I said, these are the core members. But depending on the case, it's very important to bring in ad hoc members that understand the specifics. Say if you're investigating the natural death of an asthmatic, you would probably want to have a pediatric pulmonologist sitting at the table to understand what transpired within the system that might be changed to help prevent future deaths of this nature.
I'm not going to spend a long time talking about some of the actions that have come out of state teams because Doug is going to do this later on. But you can be very strategic with the finding and come up with prevention plans that impact the whole state or you can strengthen graduated licensing or you can see all the avenues here that come out of state plans.
What I want to focus on in my last two minutes is the importance of standardized, uniform and very thorough reporting tools that are used to investigate the cases. 17 states have legislation that requires a report that's very dependent on data. 33 states have published the reports, I brought a copy of it, you can go to the web site and see if anyone is interested I have a copy. States use data in varying degrees. I've mentioned most of these, but it's the basis for making change. It's your basis for building a case for future funding. It's the basis for synthesizing broadly to make national changes, to build national campaigns that can make a difference. It's your quality assurance tool for making sure that investigations are conducted thoroughly and very thoughtfully. And the good news is the national center has spent the last two years working with a 30 person work group representing 18 states coming up with a standardized tool that has standardized data elements, a data dictionary, and 32 different ways to have standardized reports produced from this tool. And it's really going to help so dramatically at all levels, local state and national. I just want to give you a sense of the varying reporting tools that exist. It's going to be piloted over the next year. These are 19 states that have stepped forward and said they are willing to pilot the tool. And I just want you to know that everything I've spoken of with much more depth and examples from every state are available through this web cite. And if you're interested, I have a manual for child death review that has come out of the national center, I have a copy of the case reporting system tool and a copy of the case reports. Thank you. And they have that within their web sites on there also.