1. Measures of Child Well-Being from a Decentralized Statistical System: A View From the U.S. National Center for Health Statistics Stephen J. Blumberg, Ph.D. Senior Scientist, Division of Health Interview Statistics National Center for Health Statistics Centers for Disease Control and Prevention U.S. Department of Health and Human Services National Center for Health Statistics Division of Health Interview Statistics

2. U.S. Principal Statistics Agencies  Bureau of Economic Analysis  Bureau of Justice Statistics  Bureau of Labor Statistics  Bureau of Transportation Statistics  Census Bureau  Economic Research Service, Department of Agriculture  Energy Information Administration  Environmental Protection Agency  Internal Revenue Service, Statistics of Income  National Agricultural Statistics Service  National Center for Education Statistics  National Center for Health Statistics  National Science Foundation, Science Resources Statistics  Social Security Administration, Office of Policy

3. Statutory Mission of the National Center for Health Statistics  Shall collect statistics on  Extent and nature of illness and disability of the US population  Impact of illness and disability on the economy of the US  Impact of illness and disability on well-being of US population  Environmental, social, and other health hazards  Determinants of health  Health resources, including supply of services  Utilization of health care  Health care costs and financing  Family formation, growth, and dissolution

4. Operating Divisions of the Department of Health and Human Services  Administration for Children and Families  Agency for Healthcare Research and Quality  Administration on Aging  Agency for Toxic Substances and Disease Registry  Centers for Disease Control and Prevention  Centers for Medicare and Medicaid Services  Food and Drug Administration  Health Resources and Services Administration  Indian Health Service  National Institutes of Health  Substance Abuse and Mental Health Services Administration

5. Major CDC Surveys and Systems Collecting Data About Children  From National Center for Health Statistics  National Health Interview Survey  National Health and Nutrition Examination Survey  National Hospital Ambulatory Medical Care Survey  State and Local Area Integrated Telephone Survey  National Vital Statistics Systems National Linked Files of Live Births and Infant Deaths  From other CDC centers  Youth Risk Behavior Surveillance System  Pregnancy Risk Assessment Monitoring System  National Immunization Survey

6. Operating Divisions of the Department of Health and Human Services  Administration for Children and Families  Agency for Healthcare Research and Quality  Administration on Aging  Agency for Toxic Substances and Disease Registry  Centers for Disease Control and Prevention  Centers for Medicare and Medicaid Services  Food and Drug Administration  Health Resources and Services Administration  Indian Health Service  National Institutes of Health  Substance Abuse and Mental Health Services Administration

7. Maternal and Child Health Bureau, Health Resources and Services Administration  Has funded and provided direction for:  National Survey of Children’s Health  National Survey of Children with Special Health Care Needs  Both surveys are administered and conducted by the National Center for Health Statistics

8. National Survey of Children’s Health  Dates: 2003, 2007, 2011  Purpose: National & state estimates on the health and well-being of children, families, & their communities  Sample: Independent random-digit-dial (RDD) samples for all 50 states & District of Columbia  Random selection: One child 0 – 17 years selected from each household with children  Goal: Complete interviews for over 91,000 children nationally (1,700+ completed per state & DC)  Respondent: Parent or guardian  Languages: English, Spanish, & 4 Asian languages

9. Key Indicators from NSCH  Health status  General health status  Oral health status  Injuries (past year)  Breastfeeding (ever)  Risk of developmental or behavioral problems  Positive social skills  Missed school days  Health care  Current health insurance coverage  Insurance coverage consistency  Preventive health care (past year)  Preventive dental care (past year)  Developmental screening (ever)  Receipt of needed mental health care (past year)  Medical home  School and activities  School engagement  Repeated a grade (ever)  Participation in activities outside school  Screen time  Child’s family  Reading, singing, and telling stories to young children  Religious service attendance  Mother’s and father’s health status  Smoking in child’s household  Need for emergency child care arrangements  Child’s neighborhood  Neighborhood amenities  Condition of housing in neighborhood  Supportive neighborhoods, social cohesiveness  Safety of child in neighborhood

10. National Survey of Children with Special Health Care Needs  Dates: 2001, 2005-2006, 2009-2010  Purpose: To produce national and state-based estimates of the prevalence and impact of special health care needs among children 0-17 years of age  Sample: Independent random-digit-dial (RDD) samples for all 50 states & District of Columbia  Screening: All children 0 – 17 years in about 200,000 households screened for special needs  Goal: Completed interviews for approximately 750 children with special health care needs per state  Respondent: Parent or guardian  Languages: English, Spanish, & 4 Asian languages

11. Definition of CSHCN  Children with special health care needs are those:  who have … a chronic physical, developmental, behavioral, or emotional condition, AND  who also require health and related services of a type or amount beyond that required by children generally.

12. The CSHCN Screener  Five consequences 1.Limitation of activities 2.Need for or use of prescription medication 3.Need for or use of specialized therapies 4.Above routine need or use of medical, mental health, or education services 5.Need for or receipt of treatment or counseling for an emotional, behavioral, or developmental problem  Two follow-up questions 1.Due to a medical, behavioral, or other health condition 2.Condition has lasted or is expected to last 12+ months

13. Key Indicators for CSHCN  Child health  Functional difficulties, impact on activities, school absences  Health insurance coverage  Uninsurance (past year, point in time), adequacy  Access to care  Unmet needs for care or family support, problems with referrals, no usual place for care, no personal doctor/nurse  Family-centered care and medical home  Impact on family  Out-of-pocket expenses, family financial problems, time spent on care, impact on employment for family members

14. SLAITS: The State and Local Area Integrated Telephone Survey  A series of agency-sponsored surveys  National Survey of Children with Special Health Care Needs  National Survey of Children’s Health  National Survey of Adoptive Parents  National Survey of Early Childhood Health  National Asthma Survey  Survey of Pathways to Diagnosis and Services

15. Statistics Cycle

17. Why Don’t Statistical Agencies Define Needs? Most important assets for a statistical agency: CREDIBILITY AND OBJECTIVITY

18. Statistics Cycle

20. Survey-Based Data Sources for Health Insurance Coverage Estimates  National Health Interview Survey (NCHS)  National Survey of Children’s Health (NCHS and MCHB)  Current Population Survey (Bureau of Labor Statistics)  American Community Survey (Census Bureau)  Survey of Income and Program Participation (Census Bureau)

21. Statistics Cycle

24. MCHB Chartbooks

25. Data Resource Center for Child and Adolescent Health  http://www.childhealthdata.org  A project of the Child and Adolescent Health Measurement Initiative (CAHMI) at Oregon Health and Science University. Supported by MCHB.

26. Statistics Cycle

27. Integrating Function