Child Maltreatment: Strengthening National Data on Child Fatalities Could Aid in Prevention
Released: 2011-07-12T00:00:00

Letter

Background

About 53,000 children died from a range of causes in the United States in 2007—the latest year for which national data were available—according to the Centers for Disease Control and Prevention (CDC). Major causes of death among children include conditions originating in the perinatal period, accidents (such as motor vehicle traffic accidents and drowning), congenital anomalies, homicide, and cancer. Of all children who died in fiscal year 2009, NCANDS estimates that 1,770 children died from various types of maltreatment. (See fig. 1.) Moreover, 81 percent of children who died from maltreatment were 3 years old or younger, and more than half were infants 1 year or younger.

According to NCANDS, the estimated number of child maltreatment fatalities has increased nationally over the past 5 years, from 1,450 in fiscal year 2005 to 1,770 in fiscal year 2009. HHS reported that states believe this increase may be due, in part, to new state legislation, new procedures, and improved state reporting practices.

Protecting children from maltreatment is primarily the responsibility of child welfare programs administered at the state and local levels. In all states, child protective services (CPS) are part of the child welfare system. CPS generally screens and responds to suspected child maltreatment reported to it by mandatory reporters—including police officers, doctors, teachers, and other professionals—as well as by neighbors and family members. In fiscal year 2009, professionals initiated 58 percent of all reports of suspected maltreatment to CPS. CPS investigators determine whether such reports are considered maltreatment under state laws or policies. CPS also typically determines whether interventions—such as placement with a foster family—are in the best interest of the child. When CPS determines that a child’s death is from maltreatment, CPS documents the case. The state’s child welfare department reports it to NCANDS. (See fig. 2.)

At the federal level, most of the $8.4 billion in federal assistance dedicated to child welfare purposes ($7.2 billion) in fiscal year 2010 supports state child welfare programs, including foster care, adoption assistance, and child protection. HHS oversees funding provided to states that support child welfare programs, and provides technical assistance and training to states on a variety of child welfare issues. HHS has a technical assistance contract specific to NCANDS and also provides technical assistance on NCANDS and other data issues through its National Resource Centers (NRC).

CAPTA is the key federal legislation focused on preventing and responding to child maltreatment. Reauthorized in 2010, CAPTA provides supports for, among other things, data collection activities and technical assistance on child maltreatment. It also authorizes federal funding to states for grants to support prevention, investigation, and treatment of child maltreatment. In fiscal year 2010, funding for CAPTA programs totaled about $97 million, of which $26.5 million was for basic state grants to improve CPS. These grants are distributed to states by formula, and may be used to improve CPS investigations, caseworker training, and prevention programs. All states in fiscal year 2010 received CAPTA basic state grants. To receive this grant, states are required to have an approved state plan that outlines the activities that the state intends to implement. It must include, for example, provisions or procedures for receiving and responding to allegations of child abuse or neglect and for ensuring children’s safety. For grant purposes, child abuse and neglect is defined as “at a minimum, any recent act or failure to act on the part of a parent or caretaker, which results in death, serious physical or emotional harm, sexual abuse or exploitation, or an act or failure to act which presents an imminent risk of serious harm.”

Each state receiving a basic grant is also required to establish and support citizen review panels to evaluate the effectiveness of CPS policies, procedures, and practices, and, according to the National Center for Child Death Review, 14 states in 2003 reported that their child death review teams serve a dual function as CAPTA citizen review panels for child fatalities. The citizen review panels must be composed of volunteers who are “broadly representative” of the community, including members with expertise in the prevention and treatment of child abuse and neglect, and may include members of foster care review boards or child death review teams. Child death review teams exist in all but one state to review child abuse and neglect fatalities and suspicious child deaths. Results of these reviews may be used to improve services, advocate for change, and conduct public awareness activities, ultimately for the purpose of preventing future child maltreatment deaths.

Near Fatalities of Children from Maltreatment

CAPTA defines the term “near fatality” as “an act that, as certified by a physician, places the child in serious or critical condition.” Although the term is defined, neither CAPTA nor the applicable regulations further discuss data collection on near fatalities. NCANDS does not have a specific data field that identifies the case as a near fatality from maltreatment.

Child Maltreatment Data Collected by NCANDS

NCANDS collects and analyzes data on children involved in situations in which CPS either investigated an allegation of maltreatment or initiated an alternative response. State CPS agencies generally are responsible for submitting NCANDS data to HHS. Since 1996, states that receive basic state grants under CAPTA have been required to report annually— ”to the maximum extent practicable”—at least 12 data items to NCANDS on child maltreatment.

Data from NCANDS are an important source of information for several publications, reports, and activities of the federal government, as well as for child welfare officials, researchers, and others. NCANDS data are compiled annually in the Child Maltreatment report, which, as of December 2010, has been issued annually since 1992. HHS issues the annual Child Welfare Outcomes: Report to Congress partly based on state submissions of NCANDS data. This report presents information to Congress on states’ performance on national child welfare outcomes, including NCANDS data on reducing the recurrence of child maltreatment and reducing child maltreatment in foster care. NCANDS data have also been incorporated into the Child and Family Services Reviews (CFSR). Finally, NCANDS data are used to help assess the performance of several HHS programs in accordance with the Program Assessment Rating Tool.

National Data Likely Underestimate the Number of Children Who Died from Maltreatment and Provide Incomplete Information on Circumstances

More Children Have Likely Died from Maltreatment than Are Counted in National Data

More children have likely died from maltreatment than are reflected in the national estimate of 1,770 child fatalities for fiscal year 2009. According to our survey, child welfare officials in 28 states thought that the official number of child maltreatment fatalities in their state was probably or possibly an undercount. Child welfare experts and HHS officials we spoke with also thought that national estimates did not reflect the full extent of children’s deaths from maltreatment and that undercounting was an issue with child fatalities. Acknowledging the limitations of NCANDS data on child maltreatment fatalities, HHS’s Child Maltreatment 2009 report states that NCANDS fatality data are only a proportion of all child fatalities caused by maltreatment. These data are based on reports provided to NCANDS by CPS agencies within state child welfare departments.

A major reason for the likely undercounting of child maltreatment fatalities is that nearly half of states report to NCANDS data only on children already known to CPS agencies—yet not all children who die from maltreatment were previously brought to the attention of CPS. Some children may not have been previously maltreated, or their earlier maltreatment may not have been noticed or reported to CPS agencies. Child deaths from maltreatment are recorded in many state and local data sources, such as death certificates from state vital statistics offices and medical examiner or coroner’s offices, CPS records, and state and local child death review team records (see fig. 3), and in Federal Bureau of Investigation (FBI) Uniform Crime Reports at the federal level.

Because of this, HHS also attempts to capture the fatalities of maltreated children who were not previously known to state CPS agencies. Specifically, HHS instructs states on how to report data from non-CPS agencies and encourages states to obtain information on child maltreatment fatalities from other state agencies. However, in responding to our survey, 24 states reported that their 2009 NCANDS data did not include child fatality information from any non-CPS sources. More specifically, for example, 43 states responded that their NCANDS data did not include child fatality data from the vital statistics department. (See fig. 4.) Since NCANDS is a voluntary data-reporting system, state CPS agencies cannot be required to obtain information from other state agencies, according to HHS officials.

Synthesizing information about child fatalities from multiple sources can produce a more comprehensive picture of the extent of child deaths than sole reliance on CPS data. In our review of research assessing whether the number of child fatalities from maltreatment was accurate, we found that key sources of information undercounted child deaths, sometimes by significant amounts. For example, a peer-reviewed study of fatal child maltreatment in three states found that state child welfare records undercount child fatalities from maltreatment by from 55 percent to 76 percent. The data sources analyzed in this study were death certificates, state child welfare agency records, state child death review team data, and law enforcement reports to the FBI Uniform Crime Report system. The study found that each data source reviewed undercounted the total number of child maltreatment fatalities. However, more than 90 percent of the child fatality cases could be identified by linking any two of the data sources, demonstrating the value of using multiple existing data sources to determine the extent of child fatalities from maltreatment. The study also found that the multidisciplinary child death review team process may be the most promising approach to identifying deaths from maltreatment if there is a standardized data collection and reporting system in place.

Using a different methodology, HHS’s most recent National Incidence Study of Child Abuse and Neglect (NIS-4)—issued in January 2010— estimated 2,400 child deaths from maltreatment in the study year spanning portions of 2005 and 2006. The NIS is a congressionally mandated, periodic effort of HHS to estimate the incidence of child abuse and neglect in the United States. Unlike NCANDS, which relies primarily on CPS data reported by states, the NIS-4 relies on multiple sources of child death information. The NIS-4 used a nationally representative sample of 122 counties to create national estimates of the incidence, severity, and demographic distribution of child maltreatment, including fatalities from maltreatment. The NIS-4 uses two standardized research definitions of maltreatment in developing its findings. In each county, NIS-4 collected CPS data as well as reports of child maltreatment cases that came to the attention of community professionals in the county sheriff’s office; the county departments of juvenile probation, health, and public housing; municipal police departments; hospitals; public schools; day care centers; shelters; and voluntary social services and mental health agencies.

Furthermore, several factors complicate the ability to obtain comprehensive information on child fatalities from maltreatment. As a result, it can be difficult to compare child fatality data across states or over time.

Inconsistent definitions of maltreatment: Although CAPTA legislation establishes a minimum standard for the definition of child abuse and neglect, states generally develop their own variations of these definitions. Consequently, child maltreatment data at the national level can reflect an underlying inconsistency across individual states. For example, some states add medical neglect to the CAPTA definition and define the concept differently. (See table 1.)

Some experts we interviewed said that definitions need to be standardized nationally to improve the quality of NCANDS data. When states submit data to NCANDS, HHS requires them to align state definitions of child maltreatment with elements of the NCANDS definitions, using a data-mapping process. HHS officials told us this mapping process helps create more consistent data within NCANDS. However, the mapping process may not fully address underlying state differences in determining whether a child’s death was regarded as a maltreatment death. HHS officials told us they considered definitional variations less important as a factor affecting NCANDS data quality than the difficulty in obtaining agreement among various local and state investigators—such as law enforcement and medical personnel—that maltreatment was the cause of a child’s death.  Differing legal standards for substantiating maltreatment: Because states have different legal standards for substantiating maltreatment, it is difficult to compare data across states. The substantiation process generally requires child welfare caseworkers to decide whether an allegation of maltreatment, or the risk of maltreatment, meets the criteria established by state law or policy. In a Congressional Research Service (CRS) analysis, state standards for substantiating child maltreatment were categorized into three groups, ranging from least to most rigorous. CRS found that states with stricter standards for substantiating maltreatment have the lowest rates of child maltreatment. (See table 2.)  Missing data: Some states do not report any information on child fatalities in certain years (e.g., Alaska, Massachusetts, and North Carolina for fiscal year 2009). Additionally, some states do not report particular data elements. For example, in fiscal year 2009, 13 states did not report information on children who died who, within the past 5 years, had been in foster care and had been reunited with their families; 7 states did not report the relationship of the perpetrator to the child who died; and 6 states did not report the race or ethnicity of the child who died. In responding to our survey, states provided a range of explanations for missing data in their NCANDS submissions. For example, according to state child welfare officials, key reasons for their not reporting some data were that other state entities, not child welfare, collected the information; state data systems did not collect those data; and delays occurred in data collection that affected reporting.  Lack of death date: NCANDS does not ask states to identify the date of a child’s death, and establishing maltreatment as the cause of a child’s death can take many months, particularly when a criminal proceeding is involved. As a result, child deaths reported to NCANDS may have, in fact, occurred earlier than the year in which they are reported.

HHS Collects but Does Not Report Some Useful Information on the Circumstances Surrounding Child Fatalities

NCANDS collects more data on the circumstances surrounding child fatalities than are reflected in HHS’s annual Child Maltreatment report— information that could be useful for prevention. NCANDS collects information from state CPS agencies about the demographics of children who died, such as their age and race; the report of maltreatment and the CPS agencies’ response and investigation; the perpetrator; services provided to the family; and risk factors associated with the child and with the caretaker. It also collects information on broad categories of maltreatment—such as neglect, physical abuse, sexual abuse, psychological maltreatment, and medical neglect—although it does not collect more detailed information on how a child dies, such as from a bathtub incident or swimming pool drowning resulting from a parent’s neglect. However, HHS does not report some information it collects on the circumstances surrounding child fatalities. For example, when we analyzed unpublished fiscal year 2009 state data reported to NCANDS on children’s deaths from maltreatment, we found the following:  Types of abuse: Rates of physical abuse were slightly higher among older children who died from maltreatment (ages 8 to 18), while neglect rates were slightly higher among younger children who died from maltreatment (ages 7 and younger).  Child welfare history: At least 14 percent of children who died from maltreatment had a previous substantiated or indicated incident of child maltreatment.  Sixteen percent of perpetrators of fatal child maltreatment were previously involved in an incident of child maltreatment that was either substantiated or indicated by CPS.  Among parents who were perpetrators, about 60 percent were female. Of unmarried partners who were perpetrators, 90 percent were male.  Child’s risk factors: Two percent of maltreated children who died had a disability such as a developmental disability, an intellectual disability, or a visual or hearing impairment.

According to experts, detailed information on the circumstances surrounding child fatalities can provide a more comprehensive understanding of the issue of fatal child maltreatment, such as revealing patterns that could aid prevention efforts.

In addition to what is known nationally through NCANDS data, extensive information on the circumstances surrounding children’s deaths from maltreatment is collected by the Child Death Review Case Reporting System (CDR Reporting System), operated by the nongovernmental National Center for Child Death Review (NCCDR). NCCDR serves as a resource center for state and local multidisciplinary teams that review cases of child deaths for the purpose of improving case identification, investigations, services, follow-up, and prevention. Nearly all states have child death review teams comprising CPS workers, prosecutors, law enforcement, coroners or medical examiners, public heath care providers, and others. While data received from NCCDR are more detailed in each case, the data are less comprehensive than those reported to NCANDS, according to HHS. Local review teams do not review all cases of possible death due to maltreatment but rather vary in their roles and scope from locality to locality. NCCDR is funded largely by the Maternal and Child Health Bureau of the Health Resources and Services Administration (HRSA).

Begun in 2005, NCCDR’s Web-based CDR Reporting System is potentially a rich source of multistate data on child fatalities from all causes, including child maltreatment. As of June 1, 2011, 39 states had data use agreements with NCCDR, according to NCCDR officials. NCCDR’s goal is to eventually have all state child death review teams provide information on child fatalities to the data system, according to these officials. NCCDR takes a public health approach to child death review, with a focus on improving investigations and identifying modifiable risk factors and strategies for preventing similar future deaths. According to NCCDR, most states using the system analyze their data and publish annual reports. Although NCCDR conducts in-house analyses for federal partner organizations, such as the National Highway Traffic Safety Administration, according to NCCDR officials, or of sudden cardiac deaths for a hospital, CDR data on child maltreatment deaths have not yet been synthesized or published, according to the NCCDR director. (The sidebar describes the CDR data-reporting form.)

Local Investigative Challenges and Limited Coordination Hinder States’ Efforts to Collect Child Maltreatment Fatality Data and Report to NCANDS

Investigative Difficulties Can Hamper Local Data Collection Efforts

Challenges faced by local investigators, such as law enforcement officials, medical examiners, and CPS staff, in determining whether a child’s death was caused by maltreatment make it difficult for states to collect complete data on child maltreatment fatalities. These investigative challenges include lack of definitive medical evidence, limited resources for testing, differing expertise and training, and inconsistent interpretations and application of maltreatment definitions.  Lack of definitive medical evidence: Without definitive medical evidence, it can be difficult to determine that a child’s death was caused by abuse or neglect. According to our survey, 43 states indicated that medical issues were a challenge in determining child maltreatment. (See fig. 5.) For example, investigators we spoke with in California said that determining the cause of death in cases such as sudden unexplained infant death is challenging because the child may have been intentionally suffocated but external injuries are not readily visible. Similarly, a medical examiner we interviewed in Michigan said that it is a challenge to appropriately determine the cause of death for babies who may have been shaken to death or suffocated. According to experts we spoke with, a lack of evidence also makes it difficult to determine whether a death was caused by neglect. Medical neglect is a type of maltreatment caused by failure of the caregiver to provide for the appropriate health care of the child despite having the resources—financial or otherwise—to do so. Medical neglect often results from inattentiveness to a chronic illness or missing follow-up medical appointments, according to a physician from the American Academy of Pediatrics (AAP) Committee on Child Abuse and Neglect. For example, one expert told us that a medically fragile premature infant who is discharged from the hospital but not brought back in for a follow-up examination and later dies could be considered to have died from medical neglect. Experts from the American Bar Association’s (ABA) Center on Children and the Law said neglect deaths are often categorized incorrectly, which may contribute to the problem of undercounting deaths from neglect. County officials we spoke with in Michigan added it is very difficult to determine medical neglect as the cause of death because the death can appear to have been from “natural” causes.  Limited resources for testing: Another challenge in determining whether maltreatment was the cause of death is resource constraints that can limit the ability to conduct autopsies and medical tests. According to experts we spoke with from AAP, an autopsy provides much information on the factors contributing to a child’s death—such as infection, trauma, or congenital heart disease—that cannot be determined based on visual inspection. These experts indicated that financial constraints of local and state governments are the primary reason autopsies are not conducted more regularly. In Pennsylvania, a county coroner told us that even though autopsies can help clarify the cause and circumstances of a death, coroners have to make difficult choices in deciding when to order autopsies since they are expensive and there is limited funding to cover them. According to a 2009 report by the National Academy of Sciences, insufficient funding for testing influences cause-of-death determinations. A law enforcement official we spoke with in Michigan noted that only 6 of his 20 requests for DNA testing were granted because of recent state cutbacks affecting crime laboratories. In our survey, 36 states identified limited resources as a challenge to identifying and investigating maltreatment deaths. (See fig. 5.)  Differing expertise and training: Differing levels of investigator expertise—particularly among those charged with determining the cause and manner of death—also present challenges to states in collecting child maltreatment fatality data. The National Academy of Sciences notes that the skill and training of coroners and medical examiners vary greatly. For example, in some counties, medical examiners—who are physicians and typically receive death investigation training—are charged with determining the cause and manner of death, including identifying maltreatment, while other counties rely on a coroner—who may or may not be a physician or have had any medical training—to make these determinations. A medical examiner and a coroner we spoke with in California noted that because of differing expertise and training, forensic pathologists and medical examiners might categorize sudden infant deaths differently. In 1996, CDC developed a protocol for sudden infant deaths in an effort to standardize reporting these deaths (see sidebar). While training can enhance skills for conducting maltreatment investigations, 35 states identified limited investigator training as a challenge in our survey. (See fig. 5.) County officials in the three states we visited also told us that a lack of funding contributes to limited training opportunities. However, training opportunities were available in the states we visited. For example, state officials in California told us that all CPS staff are trained to recognize and report child abuse. County officials also said coroners in the state receive annual training that includes case presentations by investigators and forensic pathologists, which often include child deaths.

Inconsistent interpretations and application of maltreatment definitions. Differing interpretations and application of maltreatment definitions by investigators can lead to inconsistent determinations of cause of death. Law enforcement officials we spoke with in California noted that law enforcement officials and coroners sometimes disagree on the manner or cause of death, for example, when the death is suspected to be from natural causes but there is some indication of abuse or neglect. In our survey, 29 states indicated that the level of agreement among responsible entities—such as law enforcement officials, medical examiners or coroners, and CPS—about how to interpret and apply state definitions of child abuse or neglect was a challenge for collecting information on child maltreatment fatalities. (See fig. 5.) These entities may use their own definitions and have different goals. For example, county officials in Michigan told us that law enforcement investigates for the purpose of determining probable cause for prosecution, while CPS investigates to determine if there is a preponderance of evidence for maltreatment. AAP experts stated that certain injuries—such as abusive head trauma—are often incorrectly categorized on child death certificates as natural or accidental when the real cause of death is abuse-related. It is also difficult to distinguish at autopsy between sudden infant death syndrome (SIDS) and accidental or deliberate suffocation with a soft object, according to the AAP.

In our survey, 33 states indicated that variations across counties and other jurisdictions in identifying cause of death pose a challenge for collecting fatality information. For example, child death review team officials in Pennsylvania noted significant variability across counties in identifying child maltreatment deaths from head trauma. Similarly, state officials in California noted that some counties interpret co- sleeping deaths as maltreatment, while other counties do not, which creates inconsistencies in the numbers of child maltreatment deaths at the state level. Officials we interviewed in Michigan told us that when an external agency cross-checked its 2005 CPS data with medical records for 186 cases, the analysis indicated that 37 child deaths labeled as natural, accidental, or undetermined should have been documented as maltreatment. This variability across counties can result in greater data inconsistencies in states where the child welfare agency is county-administered with state supervision, as opposed to a state-administered system, according to national child welfare advocates. While 11 states indicated in our survey that their child welfare program was county- or locally administered, some of these states have large child populations, including California, New York, Ohio, and Pennsylvania.

Limited Coordination and Data Access Issues Pose Reporting Challenges

State child welfare officials indicated experiencing challenges coordinating among geographic jurisdictions within the state and across state lines. In our survey, 37 states indicated that the level of coordination among different jurisdictions poses a challenge for obtaining information on child maltreatment fatalities. (See fig. 6.) For example, a local CPS official in Pennsylvania told us that it can be difficult for CPS to track children when families cross county lines. State officials we interviewed in Michigan also indicated that counties face challenges obtaining medical records and death certificates from jurisdictions in another state when children are taken across state borders to the nearest trauma center in the interest of providing immediate care.

States also indicated that limited coordination with other state agencies— particularly obtaining records from the health department—can challenge their ability to report information on child maltreatment fatalities to NCANDS. According to our survey, 32 states faced challenges coordinating among state agencies. Twenty-four states indicated that agencies involved in collecting information on child maltreatment fatalities do not generally or easily share information, and 23 states cited confidentiality or privacy issues related to child maltreatment as a challenge. (See fig. 6.) For example, child welfare officials in California told us their department had restricted data sharing with the department of public health after a security breach, and had only recently renewed its data-sharing agreement. Michigan officials specifically identified confidentiality and privacy restrictions as a challenge to obtaining child maltreatment fatality data because stakeholder agencies, such as the health department, are sometimes unsure what, if any, information they can share with child welfare. Furthermore, state officials in Pennsylvania told us that state and county child welfare officials are concerned about their limited access to records from drug and alcohol programs—which can include cases involving parents of a child who died—held by another state agency. California has coordinated across multiple agencies in an effort to produce a more accurate estimate of child maltreatment fatalities (see sidebar).

States indicated that several issues related to their data systems— especially those affecting electronic capabilities—have affected the completeness of child maltreatment fatality data they report to NCANDS. For example, although Pennsylvania collects certain CAPTA data elements, the state is unable to aggregate and report to NCANDS some of the information received from counties because this information is not recorded electronically, according to state officials. The inability to link different agencies’ data systems with each other was also cited as a reporting challenge by 28 states. (See fig. 7.) States also experienced challenges reporting to NCANDS when they were either converting from one data system to another or updating their current system. According to our survey, 9 states were challenged by piloting or implementing a new child welfare information system, and the Child Maltreatment 2009 report shows that multiple states had incomplete or incomparable data because of system conversions. For example, Michigan was unable to submit data on child fatalities to NCANDS for fiscal year 2008, according to a state official, because of data errors associated with conversion to a new data system. In addition, 27 states responding to our survey reported that data entry errors posed a challenge for reporting child maltreatment fatality data to NCANDS. (See fig. 7.)

To help mitigate these and other challenges, states are implementing quality controls on the child maltreatment fatality data they submit to NCANDS. According to our survey, 34 of the 50 states responding to this question indicated that their child welfare department had a quality control process—aside from HHS’s Enhanced Validation and Analysis Application (EVAA), which assesses the quality of state data—to improve the accuracy of child maltreatment fatality data.

HHS Provides Assistance to States in Reporting on Child Maltreatment Fatalities, but States Would Like Additional Help

HHS Provides Technical Assistance to States in Reporting Data on Child Maltreatment

HHS provides assistance to states in several ways to help them report information on child maltreatment to NCANDS. NCANDS is supported by a technical team, composed of Children’s Bureau and contractor staff, that provides technical assistance and tools to states for reporting child maltreatment fatality data. There is also an NCANDS State Advisory Group that worked closely with the technical team to design and implement NCANDS and now continues to meet annually to review and update NCANDS collection and reporting processes. According to HHS, this 20-member group helps ensure that enhancements to NCANDS accurately reflect states’ experiences collecting data. The NCANDS technical team also hosts the NCANDS Annual State Technical Assistance Meeting, a key means of assistance to states in which HHS officials provide NCANDS training and updates and states share questions and information. In 2010, child welfare representatives from 38 states participated in this 3-day meeting, which included workshops on data validation, error reporting, and methods for improving the quality of data provided to NCANDS. In our survey, 36 state officials reported that these annual NCANDS meetings were moderately helpful to very helpful. The NCANDS technical team has also developed Web-based resources with information and guidance to states on NCANDS data reporting, available through the NCANDS Web portal. The NCANDS portal is the key interface between states and the NCANDS technical team, and includes guidelines about reconciling and submitting data. The portal also contains an NCANDS Listserv where state officials can share information and obtain peer-to-peer assistance, according to HHS officials.

States can also obtain individualized NCANDS technical assistance upon request. Each state has an assigned NCANDS technical team liaison who can provide targeted information and support to help states report data to NCANDS. During the 2010 data-reporting process, all states were in communication with their NCANDS technical team liaisons, according to an NCANDS report. In our survey, state officials reported high levels of satisfaction with the technical teams’ assistance, with 29 of the 50 states responding to this question identifying the help they received as moderately helpful to very helpful. State officials can also request on-site technical assistance regarding data collection and reporting from the National Resource Center for Child Welfare Data and Technology.

HHS also provides assistance to states’ child death review teams through NCCDR. NCCDR serves as a resource for state or local child death review teams. NCCDR helps states share information by publishing their child death review teams’ contact information, data, and annual reports on its Web site. In addition, NCCDR has developed a Web site designed to help child death review teams expand their prevention efforts. It offers best practices for preventing the leading causes of injury and death among children, including child abuse. The site contains links to resources, partners, and a number of injury prevention strategies including public education; legislation and policy changes; and modifications to products, physical environments, and social environments that have been rated according to their evidence-based effectiveness.

Although NCCDR regularly collaborates with federal organizations to analyze child fatality data and develop strategies to prevent child deaths, there has been little routine information sharing between NCCDR and NCANDS on child maltreatment fatalities. Federal organizations such as CDC, the Department of Defense, and the National Highway Traffic Safety Administration have collaborated with NCCDR to analyze information and expertise about child death reviews and develop prevention strategies, according to NCCDR officials. For example, in 2003, CDC developed an initiative to improve data collected on sudden unexplained infant deaths (SUID) and develop prevention strategies by monitoring trends and identifying risk factors. CDC partnered with NCCDR to develop the SUID Case Registry Pilot Study, which utilized an updated version of NCCDR’s Web-based data collection system. Officials from NCCDR and the Children’s Bureau, under HHS’s Administration for Children and Families (ACF), meet periodically in workgroups, and officials from the Children’s Bureau told us that they refer states with questions about child death reviews to NCCDR for assistance. In 2010, officials from NCCDR and the ACF Commissioner met to explore ways to enhance federal responses to child abuse deaths, and the ACF Commissioner told us that they are moving forward to fund a child fatality review conference and begin an initiative to examine evidence-based practices for preventing child abuse deaths. However, NCCDR and NCANDS officials acknowledged that, to date, they have not routinely coordinated on child maltreatment fatality data or prevention strategies.

States Would Like Additional Assistance in Collecting and Using Data on Child Fatalities and Near Fatalities from Maltreatment

Although HHS provides a variety of assistance to states on how to report data to NCANDS, state officials indicated a need for additional assistance collecting child fatality as well as near-fatality data to use for prevention efforts.

In our survey, almost half of states (23) reported needing additional assistance in collecting information and reporting data on child maltreatment fatalities or near fatalities. For example, several states mentioned that assistance with multidisciplinary coordination could help them overcome difficulties such as obtaining death certificates from medical examiners’ or coroner’s offices. HHS recognizes that collecting maltreatment fatality data from multiple sources results in more complete data, so the agency encourages states to coordinate with other organizations, such as medical examiners and departments of health. HHS officials stated that this is often a topic of discussion at the NCANDS annual meeting. However, HHS officials also noted that the agency cannot require states to use additional data sources, and states are not required to disclose whether they consulted with additional sources to collect data.

Although the federal government does not currently collect data on children who nearly die from maltreatment, states reported wanting assistance to collect and use this information. CAPTA defines a near fatality as “an act that, as certified by a physician, places the child in serious or critical condition.” HHS officials believe that such cases are most likely reported generally under maltreatment, but are not specifically identified as near fatalities because NCANDS does not have a data field identifying the case as a near fatality. HHS officials said it would be difficult to operationalize a national definition. To add a near-fatality data element to NCANDS, HHS would need to coordinate with the State Advisory Group and obtain approval from the Office of Management and Budget (OMB). However, the entire NCANDS data form will need to be reapproved in 2012, and HHS officials stated that at that time all NCANDS data elements will be reexamined. In commenting on a draft of this report, HHS stated that it had initiated consultations with the states on how to best address data collection on near fatalities of children and that HHS is considering adding a field to identify these specific cases.

States are increasingly interested in collecting and using information on near fatalities, according to HHS officials, and some states have already begun this effort. Collecting data on maltreatment near fatalities was a topic of discussion at the 2010 NCANDS Annual State Technical Assistance Meeting. Additionally, the NCANDS Listserv was recently used by two state officials to survey other states about how they review and define near-fatality cases of maltreatment. Currently, states’ definition of a near fatality varies (see fig. 8), and to establish a near-fatality data element in NCANDS, states may need to reexamine their existing definitions. According to our survey results, 32 states have a state law, statute, or policy that defines a near fatality, and 19 states already collect data on the number of child near fatalities from maltreatment. In addition, some states obtain information on the circumstances of child maltreatment near fatalities, such as the child’s age and ethnicity, the child’s relationship to the perpetrator, and whether the child was receiving foster care or family preservation services.

States predominantly use child maltreatment fatality and near-fatality data to develop strategies for preventing these occurrences, and state officials told us they would like more assistance to use this information for prevention. States reported in our survey that child maltreatment fatality data are often used to inform prevention strategies, make state-level child welfare policy changes, and allocate funding or other resources for prevention activities. In addition, states reported using the information they collect on child maltreatment near fatalities to inform or implement strategies for preventing maltreatment fatalities and to allocate funding or other resources for prevention activities. For example, as a result of trends associated with fatal maltreatment and crying infants, many states have developed public awareness campaigns, resources for parents, and other interventions to prevent shaken baby syndrome (see sidebar).

HHS officials confirmed that states were increasingly interested in receiving technical assistance on how to use child fatality data to meaningfully inform prevention efforts. State officials also reported wanting more information from other states on best practices in general and on using data for prevention efforts in particular.

Conclusions

In conclusion, children’s deaths from maltreatment are especially distressing because they involve a failure on the part of adults responsible for protecting them. Child welfare policymakers and practitioners rely on child maltreatment fatality data—voluntarily reported by states—to understand the extent and circumstances of these tragic deaths and to develop strategies to prevent them. At the state level, obtaining comprehensive data on child maltreatment fatalities is very challenging and requires information sharing among state and local agencies—each with its own policies, types and levels of expertise, and concerns. Yet such cooperative efforts are a work in progress, and assistance from HHS to help states collect and report more comprehensive child fatality data is important. At the federal level, to the extent that HHS collects but does not publish information on child maltreatment fatalities, or does not routinely share information on child fatality data analyses, opportunities may be lost to identify effective means of preventing child maltreatment deaths in the future. Finally, without national data on children’s near fatalities from maltreatment, we are unable to have a clear picture of the extent of near fatalities and the risk factors associated with such maltreatment, making it difficult to develop prevention strategies. As a society, we should be doing everything in our collective power to end child deaths and near deaths from maltreatment, and the collection and reporting of comprehensive data on these tragic situations is an important step toward that goal.

Recommendations for Executive Action

To improve the comprehensiveness, quality, and use of national data on child fatalities from maltreatment, the Secretary of HHS should take the following four actions 1. Identify ways to help states strengthen the completeness and reliability of data they report to NCANDS. These efforts could include identifying and sharing states’ best practices, particularly those that foster cross-agency coordination and help address differences in state definitions and interpretation of maltreatment and/or privacy and confidentiality concerns. 2. Expand, as appropriate, the type and amount of information HHS makes public on the circumstances surrounding child fatalities from maltreatment. 3. Use stronger mechanisms to routinely share analyses and expertise with its partners on the circumstances of child maltreatment deaths, including insights that could be used for developing prevention strategies. 4. Estimate the costs and benefits of collecting national data on near fatalities and take appropriate follow-up actions.

Agency Comments and Our Evaluation

We provided a draft of this report to HHS for review and comment, and HHS’s comments are reproduced in appendix IV. We also provided a draft of this report to the Department of Justice (DOJ) and pertinent excerpts to NCCDR. DOJ and NCCDR provided technical comments, which we incorporated as appropriate.

In its comments, HHS agreed with our recommendations to improve the comprehensiveness, quality, and use of national data on child fatalities from maltreatment. HHS also provided technical comments and additional information about activities under way or planned, which we incorporated as appropriate. For example, HHS stated that it has initiated conversations with the states to improve the identification of cases that involve near fatalities and that it plans to include two additional analyses on child fatalities in the Child Maltreatment report in 2013. While we recognize that HHS has some activities under way pertinent to issues raised in our report, more can be done to address these issues, such as by using stronger mechanisms to routinely share information and expertise on child fatalities from maltreatment. For example, although HHS cites the Federal Inter-agency Work Group on Child Abuse and Neglect as a mechanism already in place for sharing information, HHS officials previously told us that this workgroup has not often discussed child fatalities from maltreatment. Since having mechanisms is a starting point for information sharing, we clarified our recommendation to emphasize the importance of putting such means to routine use. HHS also noted that NCANDS data collection has always been voluntary, as our report acknowledges.

In its comments, HHS also raised concerns about the nationwide Web- based survey of child welfare administrators—one of several methodologies used for this report—noting that it had several limitations. According to HHS, survey completion was typically delegated to subordinates, which can create inconsistencies in the types of respondents and data collected; the staff person responding may not have considered information from other divisions; and finally, states provided self-reported information and thus GAO cannot validate it. For the most part, these observations would apply to any survey in which the respondent is answering the survey questions as a representative of an organization rather than as an individual. We took several precautions to minimize these limitations. For example, before activating the survey, we confirmed that the state officials listed were correct for completing the survey; obtained comments on the survey draft from three experts, in addition to conducting pretests with state officials; and provided respondents ample time for consultation with other state officials as needed. We received responses from all states. While survey data are not typically verified independently, in our judgment the precautions taken to address survey limitations are sufficient for our purposes. (App. I provides information on our survey methodology.).

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If you or your staff have any questions about this report, please contact me at (202) 512-7215 or brownke@gao.gov. Contact points for our Offices of Congressional Relations and Public Affairs may be found on the last page of this report. Key contributors to this report are listed in appendix V.

Appendix I: Scope and Methodology

Survey of States

To obtain state perspectives on our objectives, we conducted a Web- based survey of child welfare administrators in the 50 states, the District of Columbia, and Puerto Rico. The survey was conducted using a self- administered electronic questionnaire posted on the Web. HHS provided us with names and contact information for state child welfare administrators. We contacted child welfare administrators via e-mail announcing the survey and sent follow-up e-mails to encourage responses. The survey data were collected between October and December 2010, with child welfare officials from every state, the District of Columbia, and Puerto Rico responding. The survey included questions about state laws related to child maltreatment, child welfare department coordination with other agencies or entities, state challenges related to identifying and collecting information on child maltreatment fatalities and reporting these data to NCANDS, child death review teams, state challenges related to collecting information on child maltreatment near fatalities, and federal assistance from HHS to states on data collection and reporting.

We worked with agency officials and experts to develop the survey. Because this was not a sample survey, there are no sampling errors. However, the practical difficulties of conducting any survey may introduce errors, commonly referred to as nonsampling errors. For example, differences in how a particular question is interpreted or in the sources of information that are available to respondents can introduce unwanted variability into the survey results. We took steps in the development of the survey, data collection, and data analysis to minimize these nonsampling errors. For example, prior to administering the survey, we pretested the content and format of the survey with four states (Arizona, Kansas, New York, and Wisconsin) to determine whether (1) the survey questions were clear, (2) the terms used were precise and accurate, (3) respondents were able to provide the information we were seeking, and (4) the questions were unbiased. We chose these pretest states based on a number of factors, including recommendations from HHS officials or experts, whether the state collected information on near fatalities from maltreatment, whether the state had a state-level child death review team, and overall child population, among others. We made changes to the content and format of the final survey based on pretest results. Because this was a Web-based survey in which respondents entered their responses directly into our database, there was a reduced possibility of data entry error. We also performed computer analyses to identify inconsistencies in responses and other indications of error. In addition, an independent analyst verified that the computer programs used to analyze these data were written correctly.

Literature Review

To identify research that estimated the number of child deaths from maltreatment in the United States and the extent to which these deaths are accurately captured, or undercounted, we searched ProQuest, Dialog Social Science Databases, NTIS, SocAbs, Nexis Statistical Master File, and MEDLINE. We also asked researchers and subject matter experts to identify studies. We selected 19 studies that had been published after 2000; had a focus on the child fatality data collection process in the United States; had a state or national, rather than county-level, focus; and focused on child maltreatment fatalities, not abuse and neglect. For each selected study, we determined whether the study’s findings were generally reliable. Two GAO social science analysts assessed each study’s research methodology, including its research design, sampling frame, selection of measure, data quality, limitation, and analytic techniques for its methodological soundness and the validity of the results and conclusions that were drawn.

NCANDS Data Analysis

To identify the extent to which HHS collects and provides comprehensive information on child fatalities from maltreatment, we obtained and analyzed NCANDS data from the National Data Archive on Child Abuse and Neglect (NDACAN) at Cornell University. NDACAN prepares data and documentation for secondary analysis, and disseminates the datasets to researchers. We obtained the NCANDS datasets for federal fiscal year 2009 from NDACAN for our analysis. The NCANDS datasets consist of files in three formats: the child file, the agency file, and the summary data component (SDC). The child file dataset is the case-level component of NCANDS that contains child-specific data of all state CPS investigations or assessments of alleged child maltreatment that received a disposition during fiscal year 2009. Fifty states submitted the child file in fiscal year 2009, including the District of Columbia and Puerto Rico. The agency file is the NCANDS state-level component, which is submitted by states that submit the child file. The agency file contains aggregated state-level data that have been requested by CAPTA that are not able to be collected at the case level. This includes data on preventative services, CPS workload, and child fatalities not reported at the case level in the child file. For fiscal year 2009, 50 states submitted the agency file. States that are unable to submit case-level data submit the SDC file. The SDC consists of aggregated state-level statistics of key items in the child file and agency file. (Two states submitted the SDC for fiscal year 2009.)

Both states and NDACAN take steps to protect confidentiality. States encrypt all identification variables submitted to NCANDS to prevent tracing a child file record back to the record in the state’s child welfare information system. For records involving a fatality, NDACAN recodes certain variables to mask information, including the state, county of report, information about the child, and perpetrator identification.

We analyzed a subset of fiscal year 2009 NCANDS child file cases in which a child maltreatment fatality had occurred (i.e., those in which the maltreatment death data element was equal to 1 or “yes”). Data elements that were analyzed included age, sex, maltreatment type, and perpetrator characteristics. In addition to the analysis of fiscal year 2009 child file cases in which a maltreatment death had occurred, we analyzed four variables each from the fiscal year 2009 agency file and SDC. These four variables were the number of child maltreatment fatalities, foster care deaths, children whose families had received family preservation services in the 5 years prior to fiscal year 2009, and children who had been in foster care and were reunited with their families in the 5 years prior to fiscal year 2009. These agency file and SDC variables were summed with the equivalent child file variables to yield complete totals.

We assessed the reliability of the NCANDS data provided by NDACAN by conducting electronic testing; reviewing documentation on the NCANDS data; and interviewing officials from NDACAN, the NCANDS contractor (Walter R. McDonald & Associates), and the Children’s Bureau of HHS to clarify data elements and procedures for data collection and reporting. To verify the number of unduplicated fatalities due to child maltreatment, we compared our assessment with the analysis done by NDACAN researchers. The NCANDS data were found to be sufficiently reliable for the purposes of this engagement.

NCCDR Data Analysis

To examine the extent to which HHS collects and provides comprehensive information on child fatalities from maltreatment, we requested and obtained state child death review team data from NCCDR’s Child Death Review (CDR) Case Reporting System. The CDR Case Reporting System is a Web-based application that allows local and state users to enter case data and access and download their data via the Internet on a continual and voluntary basis. In 2009, state and local child death review teams in 26 states submitted data to the CDR Case Reporting System. These data contain detailed information on the child welfare history of victims, including the number of CPS referrals and substantiations per child, whether there was an open CPS case at the time of death, and whether any siblings were ever put in foster care. The database contains extensive information on the incident that led to the death, including the place of the incident, such as the child’s home, and the type of injury that caused the death, such as a weapon or drowning. The system also collects information on acts of commission or omission for every death entered into the system, regardless of cause or manner. To confirm the reliability of these data, social science methodologists at GAO reviewed documentation about the collection and reporting of NCCDR data. We also interviewed several NCCDR officials who were responsible for these data and HHS officials responsible for the cooperative agreement with NCCDR. In addition, we compared NCCDR data on child fatalities with NCANDS data on child fatalities in the NCCDR states. Although these data were not sufficiently reliable to support a finding, they were reliable for providing background context and examples of the possible data elements not available from NCANDS.

Site Visits

To gather additional information about challenges states face in collecting and reporting information on child maltreatment fatalities to NCANDS, including challenges at the local level, and federal assistance to states, we conducted site visits to California, Michigan, and Pennsylvania and met with state officials and officials from selected localities within those states between July and December 2010. Specifically, we met with local officials from Calaveras, Los Angeles, and Sacramento counties in California; Bay, Genessee, Ingham, Lincoln, Oakland, and Wayne counties in Michigan; and Berks, Lehigh, and Philadelphia counties, among others, in Pennsylvania.

We selected these states based on recommendations from HHS officials and experts, child population, collection of information on child maltreatment near fatalities, type of child welfare program administration (state-administered and county-administered with state supervision), and geographic diversity. We worked with state officials to select counties that were located in both urban and rural areas to ensure that we captured any related differences in data collection and reporting processes and federal assistance. During these visits, we interviewed state child welfare officials and officials from the department of health or other body coordinating the child death review process, and collected relevant state laws, policies, procedures, and reports. At the local level, we interviewed CPS officials, law enforcement personnel, and medical examiners or coroners in charge of investigating child deaths in each state. Through these interviews, we collected information on state and local processes for collecting and reporting data on child maltreatment fatalities and the associated challenges officials face. We conducted some of these interviews via telephone to limit travel costs.

Information we gathered on our site visits represents only the conditions present in the states and local areas at the time of our site visits. We cannot comment on any changes that may have occurred after our fieldwork was completed. Furthermore, our fieldwork focused on in-depth analysis of only a few selected states. On the basis of our site visit information, we cannot generalize our findings beyond the states we visited.

Expert Interviews

For all three objectives, we interviewed HHS officials and other experts on child maltreatment fatalities and near fatalities. We identified child maltreatment researchers through our literature review and through recommendations from stakeholders knowledgeable about child maltreatment fatalities and near fatalities. For this study, we interviewed HHS and other officials knowledgeable about NCANDS, NCCDR, and NIS-4 data. We also interviewed researchers and experts affiliated with the following centers and associations: the American Academy of Pediatrics (AAP), the American Bar Association’s (ABA) Center on Children and the Law, the Child Welfare League of America, the National Coalition to End Child Abuse Deaths, the Interagency Council for Child Abuse and Neglect/National Center on Child Fatality Review, and NCCDR. (The National Coalition to End Child Abuse Deaths includes officials from the Every Child Matters Education Fund, the National Center for Child Death Review, the National District Attorneys Association/National Center for Prosecution of Child Abuse, the National Association of Social Workers, and the National Children’s Alliance.)

We conducted this performance audit from April 2010 through July 2011 in accordance with generally accepted government auditing standards. These standards require that we plan and perform the audit to obtain sufficient, appropriate evidence to provide a reasonable basis for our findings and conclusions based on our audit objectives. We believe that the evidence obtained provides a reasonable basis for our findings and conclusions based on our audit objectives.

Appendix II: Selected Information on Child Fatalities from Maltreatment

Appendix II: Selected Information on Child Fatalities from Maltreatment Selected NCANDS results on child fatalities from maltreatment reported by HHS for fiscal year 2009 Forty-six percent of fatalities were children younger than 1 year, and 81 percent were 3 years old or younger. Boys had a slightly higher child fatality rate than girls, at 2.36 per 100,000 boys in the population, and girls had a rate of 2.12 per 100,000 girls in the population.  Of all child fatalities, 39 percent were White children, 29 percent were African- American, and 17 percent were Hispanic. Children of American Indian or Alaska Native, Asian, Pacific Islander, or multiple race categories collectively accounted for 3.6 percent, and 11.2 percent were children of unknown race. Thirty-seven percent of child fatalities were caused by multiple forms of maltreatment.  Neglect accounted for about 36 percent of fatalities and physical abuse for 23 percent.

Seventy-six percent of child fatalities were caused by one or more parents. Twenty-seven percent of child fatalities were perpetrated by the mother acting alone, and 23 percent were caused by both parents. Foster parents and legal guardians accounted for less than 1 percent of perpetrators (foster parents were reported as the perpetrator in 5 child fatalities from maltreatment). Twelve percent of children who died from maltreatment were from families who had received family preservation services in the previous 5 years. Two percent of children who died from maltreatment had been in foster care and were reunited with their families in the previous 5 years.  HHS’s Child Maltreatment 2009 report did not provide information on these data elements for children who died from maltreatment.

Child risk factors include having an intellectual disability, physical disability, learning disability, and visual or hearing impairment.

Risk factors associated with the caregiver include alcohol or drug abuse, domestic violence, emotional disturbance, and financial difficulties.

Preventive services are provided to parents whose children are at risk of maltreatment and include family support, child day care, education and training, employment, and housing.

Information from NCCDR on Child Maltreatment Fatalities

Following are selected results from our analysis of child maltreatment data in the CDR Reporting System: Manner of death: Homicide was the manner of death on the death certificate for 57 percent of child maltreatment fatality victims reported to NCCDR in calendar year 2009.

Cause of death: Injury was the primary cause of death for 79 percent of children who died from maltreatment, and just over half of those children were killed with a weapon.

Child welfare history: Of the 417 reported child maltreatment fatality victims:  Thirty-one percent had a documented history of maltreatment.  Thirteen percent had an open CPS case prior to the incident causing the child’s death.  Fourteen percent of children who died had at least one CPS referral prior to their deaths.  Eight percent were placed in foster care prior to their deaths.

Appendix III: Information from States Not Reported in NCANDS

State Data on Child Fatalities Not Reported to NCANDS

Thirty-two states also collected information on child maltreatment fatalities that were not reported to NCANDS in fiscal year 2009, according to our survey of state child welfare officials. For example, 27 states reported that they collected data on the child’s family characteristics that they did not report to NCANDS in fiscal year 2009. (See table 4.) Data that states collect but do not report to NCANDS could represent additional, more detailed information on children who die from maltreatment (such as information on siblings’ prior contact with the child welfare system) or data that states collect but cannot report for technical reasons. For example, in explaining this condition, two states noted that much of the data was captured in narrative or case logs—not in reportable data fields—while another state noted that it collects additional information on child maltreatment fatalities reported by local county child welfare agencies.

Appendix IV: Comments from the Department of Health and Human Services

Appendix V: GAO Contact and Staff Acknowledgments

Contact

Staff Acknowledgments

Brett Fallavollita, Assistant Director, and Deborah A. Signer, Analyst-in- Charge, managed this assignment and made significant contributions to all aspects of this report. Katherine Berman, Amanda D. Cherrin, Alison Gerry Grantham, and Marcella Wagner, Analysts, also made important contributions to this report. Katherine van Gelder and James E. Bennett provided writing and graphics assistance. Hiwotte Amare, Lorraine R. Ettaro, Stuart M. Kaufman, and Monique B. Williams provided data analysis and methodological assistance; and Julian P. Klazkin provided legal assistance. Almeta J. Spencer provided administrative support.