The Power of Child Death Review Improving our understanding of why children die and taking action to prevent child deat

1. The Power of Child Death Review Improving our understanding of why children die and taking action to prevent child deaths Teri Covington, Director, National Center for Child Death Review Rosemary Fournier, Michigan FIMR Coordinator, Michigan Department of Community Health Steven Wirtz, PhD, Research Scientist, Epidemiology and Prevention for Injury Control Branch, California Department of Public Health

2. Child Deaths in America • Every year almost 54,000 children ages birth to age 19 die in the United states. • On average, 148 children died every day. • Almost half are infants. • 25% are adolescents. • Unintentional injuries are the leading cause of death in all age groups, except for children under one month old. • Rate of child deaths has been decreasing in all age groups over past ten years. • Wide disparities continue to persist by race and gender.

3. Review preventable deaths • CDR is now mandated or enabled by law in 39 states. • 22 are housed out of their State Health Department. • 37 states now have local review teams. • 48 states review deaths through age 17. • Half review deaths to all causes. • Median state funding level is $150,000, with limited local funding Review mostly child abuse deaths Transitioning to prevention No review team(s)

4. Child Death Review has Evolved from only an Investigative Focus To include a Prevention Focus

5. CDR is multi-disciplinary-working together to keep kids alive, safe and healthy!

6. At Every Review • Is the investigation complete? • Are there services that should be provided? • What were the major risk factors? • What agency systems (policies and practices) need improvement. • What can be done to prevent other deaths: change behavior, technology or laws? • Who will take the lead? • Who should we talk to?

7. The hard work of systems change and prevention is what CDR is all about!

8. Improving InvestigationsReview Teams are Impacting the Debate/Discussion at local, state and national levels on Sudden and Unexplained Infant Deaths by Improving SUID investigations

9. Teams are Improving Services • Suicide Support Resources • CISD Support for EMS • SIDS bereavement services • Crisis support • Sexual assault support services

10. Teams are Improving Child Welfare SystemsThe Las Vegas Experience-76 deaths • Identification of and the reporting to CPS, of suspected child abuse and child deaths. • Investigation by law enforcement of suspected abuse and of child deaths. • Investigations of child deaths by the Coroner’s Office. • Case intake and investigation by CPS of suspected child abuse and of child deaths. • CPS substantiation of child abuse. • Provision of Services by CPS. • Actions taken by the civil and criminal divisions of the District Attorney’s Office and the Courts.

11. Finding: Reports of neglect due to poor supervision and or inadequate care were usually screened out. Change: 144 new CPS worker positions were funded for Clark County.

12. Finding: Police, coroners, medical examiners and CPS rarely worked together in investigating fatal child abuse. • Change: A new multi-disciplinary investigation team meets weekly and in conducting joint investigations of all sudden and unexpected child deaths.

13. Preventing DeathsthroughNew Communityand StatePrograms

14. But…..the power of CDR could be more if: • Teams borrowed from the FIMR model and learned more about natural infant deaths to improve perinatal systems of care. • Teams borrowed from injury prevention and did a better job translating their understanding of injury risk factors to prevention.

15. Reviewing Natural Infant Deaths

16. Infant Mortality Weathering Racism Bad Housing Unemployment Fatherless households Bad Neighborhoods Hopelessness Premature Birth Stress Poverty Low Birth Weight Limited Access to Care Smoking Substance Use Family Support Under- Education Poor Working Conditions Genetics Nutrition With permission from Arthur James, MD

17. A process that tells us How and Why babies die in a community Fetal Infant Mortality Review1991 - 2007

18. Fetal and Infant Mortality Reviews 240 FIMRS in communities in 22 states. Unique characteristics: • Medical case abstraction of prenatal and birth history. • Interview with mother. • De-identified case reviews • Community action teams to implement findings.

19. FIMR’s Strength • Access to medical records • Grant of authority by MDCH • CPS histories authorized by DHS • Home Interviews (Qualitative Data) • Community specific determinants of Infant Mortality

20. Use of Data • Death certificates provide an overview of all infant deaths in Michigan • When matched with birth certificates, we know maternal characteristics, prenatal care, and labor complications • FIMR provides information on more specific psychosocial issues, gaps in care, factors which contribute to infant death in specific communities

21. FIMR and CDR common goal: Local, multidisciplinary review aids in better understanding how to prevent future deaths and improve lives of babies, children, and families.

22. Risk Factors in Infant DeathsMaternal Characteristics • Living in poverty • Unmarried • Low education level • Unintended, unwanted pregnancy • Less than adequate prenatal care • Smoking during pregnancy

23. Risk Factors cont. • Young maternal age (under 20) • First birth as teen • Victim of domestic violence • Substance abuse during pregnancy • Presence of life stresses • homelessness • lack of transportation • mental illness • poor nutrition

24. Effective Reviews of Perinatal/Neonatal Deaths • Get the right People to the table . . . • Gather enough data to give a clear picture of maternal health history • Identify the risks, gaps in care and services • Put findings into action to improve care and resources for women, infants, and families

25. FIMR Medical Expertise OB, Peds, Pathology, ED, Family Practice Other Health Care Providers Nurses, Social Workers, Dietitian, Discharge Planning, Home Care Human Service Providers Child Welfare Agencies, Mental Health, Substance Abuse Public Health, Medicaid, WIC, Family Planning, MSS/ISS, Outreach Workers CDR Law enforcement Prosecutors Social Services/FIA Emergency Medical Personnel Medical Examiners/coroners Public Health Pediatricians Department of Corrections Housing Authority Transportation Authority Schools District Juvenile Court Child Care Licensing Merge Team Composition

26. For CDR Use FIMR Sources of information for Maternal Health History • Birth and Death certificates • Prenatal records • OB/GYN history, past pregnancies • Hospital records • Antepartum • Delivery • Newborn/NICU • ED admissionsPublic Health Records • MSS/ISS (Maternal Infant Health Program: MIHP) • WIC • Family Planning • Other support services (CSHC, Healthy Start) • DHS Records (including CPS histories) • Police reports (domestic violence, other stressors)

27. Bring FIMR’s Two-Tier Model of Community Action Team to CDR

28. CAT also includes: Community Leaders • Mayor, City Council, County Executive • Business Leaders, Chamber of Commerce • Clergy • Civic Groups (Kiwanis, Junior League) SIDS/OID Programs • Advocacy Groups • March of Dimes • Healthy Mothers/Healthy Babies • Family Support Groups • State and Local Safe Kids Coalitions

29. Evaluation of FIMR Programs Nationwide • 193 participating communities • Cross-sectional observational study (Telephone interview, written survey & site visits) • Communities with FIMR • Communities with Perinatal Initiatives • Communities with both (FIMR & PI) • Communities with neither

30. Results • FIMR Programs contribute significantly to improvements in systems of health care for pregnant women and infants through enhanced public health activities in communities. • Strongest effects when FIMR is coupled with perinatal initiatives. • On average, FIMRs with CATs are more likely to implement recommendations in ten MCH areas. • Over half of FIMR members also participated in CDR.

31. Fetal-Infant Mortality Review Child Death Review Coordinating Fetal-Infant Mortality and Child Death Review in a Community Common Functions Mechanism for referral to other review process Identification of Deaths Mechanism for referral to other review process Data Collection Triage Individual Functions Maternal Interview Case Preparation Case Preparation FIMR Results CDR Results Common Functions Case Summaries Data Base Management Data Analysis Research Recommendations Individual Agencies (e.g. police, FIA, hospitals Community Action Team Multi-Purpose Collaborative Body State Agencies

32. For more information:Rosemary Fournier, RN, BSN State FIMR Program CoordinatorFournierr1@michigan.gov517) 335-8416Washington Square Building 109 W. Michigan Lansing, MI 48913

33. Developing Effective Recommendations: Taking Findings To … Action

34. Acknowledgements • Valodi Foster, MPH, Emergency Preparedness Office, California Department of Health Services • Supported in part with grant funds provided through the Centers for Disease Control and Prevention

35. Purpose of Today’s Presentation • Focus on developing and writing effective recommendations • Brief review: • California CDRT recommendation study • Guidelines for writing effective recommendations • Interactive discussion on taking findings to action

36. CDRT Recommendations Project • Questions about the value of CDRTs • Variability in the functioning of CDRTs • Making recommendations • Writing reports • Questions about the effectiveness of team recommendations • Need for more information

37. CDRT Recommendations Project • Based our study on public health planning model • Sampled written reports from 75 CDRTs throughout the United States • Developed Guidelines for Writing Effective Recommendations • Reviewed and assessed over 1,000 recommendations

38. CDRT Recommendations Project • Findings: • Quality of recommendations varied widely • CDRTs did best on front end • Problem statement • Best practices • CDRTs scored lowest on follow up activities • Written recommendations showed moderate specificity and awareness of Spectrum levels, but lacked clarity on who was to take action

39. Assure Widespread Adoption Identify Risk & Protective Factors The Public Health Approach to Prevention Develop & Test Prevention Strategies Define the Problem

40. Harborview Injury Prevention and Research Center • Best Practices in Prevention-Oriented Child Death Review • Providing prevention-oriented evidence based resources for child death review teams • http://depts.washington.edu/cdreview/main.php • supported in part by HRSA, through its EMS–C Targeted Issues Grant Program (1H34MC02543–01–033) • Recommendation Generator

41. Role of Effective Recommendations • Recommendations come after • Defining the Problem and • Identifying Risk and Protective Factors • But Before • Developing and Testing Interventions • They are part of developing solutions

42. Framework for Developing Guidelines for Writing Effective Recommendations • Clarifying roles and engaging members in prevention • Using data to help define problems • Identifying risk and protective factors • Developing solutions • Proposing strategies, policies, and interventions • Monitoring implementation of interventions • Promoting accountability through evaluation of impact/outcomes

43. Problem Assessment • Problem Statement • Includes problem definition; local, state & national data; risk and protective factors • Best Practices • Demonstrates knowledge of “best” or “promising” practices for addressing the problem • Capacity • Demonstrates knowledge of existing local efforts, resources, capacities, “political will”, and/or takes advantage of serendipitous opportunities

44. Written Recommendation • Intervention Actor • Identifies the persons and organizations (doers) to take action in a manner consistent with the problem assessment • Intervention Focus • Identifies the recipient (e.g., person, agency, policy, law) of the intended action in a manner consistent with the problem assessment

45. Written Recommendation (Cont’d) • Specificity • The plan of action described in sufficient detail to allow follow up consistent with: • Issues identified in problem assessment • Actions appropriate for recipient • Places/institutions identified where changes will occur • Timeframe for action identified

46. Written Recommendation (Cont’d) • Accountability • Assigns and obtains buy-in of someone (i.e., team member or other individual) to be accountable for follow up and tracking of progress on actions taken within timeframe identified • Spectrum of Prevention • Demonstrates awareness of levels of intervention and identifies appropriate level(s) given issues identified in problem assessment

47. Refer Recommendations Child Death Review Team Coord. Body New Coalition Existing Group One Person Agency Don’t leave a case without assigning responsibility for follow through

48. Spectrum ofPrevention Influencing policy and legislation Mobilizing neighborhoods and communities Changing organizational practices Fostering coalitions and networks Educating providers and training people who can make a difference Promoting community education Strengthening individual knowledge and skills

49. Action on Recommendation • Dissemination • specifically states who will receive the recommendation, and includes not only the potential actors and recipients but also appropriate decision makers, funders, and potential supporters. • Outcomes/Impacts • identifies a mechanism/procedure to document the impacts and outcomes that result from action on team recommendations.

50. Examples of Taking Recommendations to Action • National FIMR study – two tier process • Humboldt County • Unsafe sleep environments – Turned to existing “community action team” and asked them to form task force • Sacramento County • Home visitation program – recommend to policy makers the formation of task force to develop options • Neglect – propose formation of a community collaborative and identified champion