A Simple Child, That lightly draws its breath, And feels its life in every limb, What should it know of death? William Wordsworth

Coordination of Child Death Review and Citizens Review Panels Maximizing the Opportunities to Prevent Fatal Abuse and Neglect Presentation at the National Citizens Review Panel Meeting May 2003 National MCH Center for Child Death Review

CAPTA A state may designate as panels for purposes of this subsection one or more existing entities established under Federal or State law, such as child fatality review panels or foster care review panels, if such entities have the capacity to satisfy the requirements…

Child Death Review Improving our understanding of why children die ~ And taking action to prevent child deaths

Origins of CDR Poorly understood definitions Uncoordinated and incomplete investigations Incorrect diagnosis of manner and cause Poor coordination in service delivery Reporting and surveillance limited CDR began as a local response to the under-reporting of child abuse: Missouri Study in Pediatrics

History of CDR in the U.S. 1980s: Grass roots organization of local teams Early 1990s: Following landmark Missouri study of fatal abuse deaths, national and state efforts lead to models of CDR to improve child abuse reporting and services, with support from the ABA and OCAN Mid 1990s: Funding of efforts to support states and national CDR training. MCHB begins efforts to expand CDR to review of all preventable deaths. Late 1990s: Most states with CDR but wide variation in scope and process. States form regional support coalitions. Efforts to coordinate CDR with other review processes, including Domestic Violence and Fetal and Infant Mortality Review.

Purpose of CDR 49 states report that they currently have some type of CDR program (Brown Study). 46 states reported that the two most important purposes of CDR were: –Identifying circumstances leading to the death. –Providing suggestions for the prevention of future deaths. At least 13 states use state CDR reviews as part of CAPTA citizens review panels. 13 states reported that the prosecution of child maltreatment fatalities is an important purpose of their CDR. CDR is mandated or enabled by law in 32 states.

Focus of CDR by State Public Health DOJ/CPS Medical Examiners In Transition

The death of a child is a community problem ~ and is too multi-dimensional for responsibility to belong in any one place. Consensus on the Principle of CDR

Models Vary State and Local Teams: Local teams conduct intensive case reviews and state boards review findings of local teams. 27 states. State-only teams conduct case reviews of selected cases, usually fatal abuse and neglect. 13 states. Local teams review cases independently without any state-supported program or board. 9 states.

The Scope of the Review Almost half of teams review deaths to all causes; of those that limit reviews, 92% exclude deaths from natural causes. All review CAN deaths. 48 states review deaths through at least age 17, one state to age 15. States vary greatly on time frames for the review. States vary little on agencies represented at reviews.

Reports of Findings Approximately half of states have a case report tool and centralized data system. Approximately 25% publish an annual report with findings and recommendations. Most states have borrowed from each other in development of a report tool, but no minimum data set exists. The CDC is developing a tool for CDR teams to report violent deaths into NVDRS.

The Process Team conduct a social autopsy of all the factors leading up to the child’s death: including environmental, social, economic, health and behavioral factors. The process is as simple as a group of people coming together, sharing what they each know about the circumstances of the death, and deciding what they should do to prevent another child from dying in the same way.

Depending on a person’s role: protective services, medical examiner, public health, police…each members view of a child fatality is going to be different. The full picture comes from combining these views. Team Members

Common Team Members Medical Examiner Public Health Officer CPS Administrator Law Enforcement Officer Prosecutor Community Mental Health Health Care Providers/Hospitals Funeral Home Providers Community Child Protection Fire Department EMS Public Schools Experts ( by cause of death) Ad hoc Members

Community-Based Teams Adapt state protocols to meet local needs. Ideally operate with legislated authority. Broad representation of local agencies Shared ownership. Take local responsibility for action. Share findings with state for state-level analysis and action.

For an Effective Review Is the investigation complete? Are there services that should be provided? What were the major risk factors? What agency policies and practices need improvement. What can be done to change behavior, technology, the environment or laws-using evidence-based approaches. Who will take the lead? Who should be engaged?

Reviews lead to Results Improving state policies and practices Improving local systems of care State and local prevention initiatives Teams don’t usually focus on punitive actions

For Example 863 recommendations proposed=41% 464 implemented within 3 months=23% Local Initiatives Resulting from the Reviews in Michigan: ,108 Reviews

Who Took the Lead? Health Department91 Law Enforcement50 Schools31 Local Community Group23 Social Services15 Mental Health7 Others73

House Fires St. Louis The city team found that most of the city’s child fire deaths were occurring in one neighborhood-and that in all of the deaths, the homes did not have working smoke detectors. Using neighborhood groups, the city now has an annual fire prevention day. Streets are closed for children’s activities, fire trucks roam the neighborhood giving out rides and volunteers go door-to-door installing quality smoke detectors and safety information. A Neighborhood Fire Prevention Party

Abandoned Infants Mobile County Area Baby Secret Safe Places Following the reviews of 11 deaths of abandoned babies, state law was enacted to allow parents to leave infants at hospital emergency departments, with no questions asked and no penalty-as long as infants were not abused and less that 72hours old. The following year, there were no abandoned baby deaths in the Mobile Area. This program became a national model and 36 other states and two countries have passed similar legislation.

Child Abuse Cook County The state director of the Department of Children and Family Services is required by the Child Death Review Act to respond to every CDRT recommendation within 90 days. 70 recommendations received the attention of DCFS in 2000, including numerous ones leading to immediate changes in state child protection policies and state child abuse prevention efforts. These include a requirement to screen for DV on all CPS complaints when investigations includes a paramour; reviews of policies regarding medically fragile children; development of new campaigns for safe sleep and drowning prevention. Immediate Responses from DCFS

Commonalities with CRP Types of Cases Intense Case Review Multidisciplinary membership State focus Production of Reports Goal of Improving Systems

Differences with CRP Limited in citizen/parent involvement. Not as focused on CPS “agency performance” Not focused on state CAPTA plans, Title IV E Foster Care and Adoption. Different organizational homes. Rarely have family interviews as part of case. CRP is federally required. CRP requires near fatal case review.

Benefits to CRP of Coordinating with CDR You’ll find more cases. You’ll be able to access more extensive information from different sources. You can work through an existing multidisciplinary team. Legislative support may already be in place.

Benefits to CDR of Coordinating with CRP Increased community investment and involvement with local resources. Better understanding of CPS policies and practices. Expand focus to near fatalities. States are required to give CRPs information. CRP required to focus on state and local policies and procedures.

State Examples Michigan Illinois Wyoming Connecticut North Carolina Others?

Other Review Programs to Consider Domestic Violence Fatality Review –National Council of Juvenile and Family Court Judges –Philadelphia Women’s Death Review –Virginia Family and Intimate Partner Violence Reviews Fetal and Infant Mortality Reviews

Create CDR protocols and supporting resources. Establish a national web-based report system for local and state teams. Provide technical assistance and support to teams. Convene a national meeting of state CDR coordinators. Coordinate with other mortality and morbidity reviews, Promote CDR to national public and private organizations.

Model legislation Guidance on HIPPA Training Curricula Guides to Effective Reviews Coordinator tools Assistance in obtaining/using mortality data Prevention resources by cause of death Supporting Resources

For more information, call The Center for Child Death Review is supported in part by Grant No. 1 U93 MC from the Maternal and Child Health Bureau (Title V, Social Security Act), Health Resources and Services Administration, Department of Health and Human Services.

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” Margaret Meade