Using population-based survey data to monitor the health of children and youth with special health care needs and disabilities

Abstract

Population-based surveys serve as a key source of information about a range of health issues. Children and youth with special health care needs (CSHCN) or disabilities have been less visible in these efforts. However, a number of large-scale surveys over the years have captured health data that include and identify children, adolescents, and young adults with disabilities and/or special health care needs (SHCN). Such surveys provide a valuable window on the tremendous diversity of health conditions that may impact individuals from early development through adolescence and adulthood, as well as the many factors that can facilitate or hinder positive health and well-being. In this chapter, we describe in detail several CSHCN national health surveys, including the National Survey of Children with Special Health Care Needs (NS-CSHCN), National Survey of Children's Health (NSCH), National Longitudinal Study of Adolescent Health (Add Health), National Health Interview Survey (NHIS), National Education Longitudinal Study of 1988-2000 (NELS:88), Youth Risk Behavior Surveillance System (YRBSS), and the Medical Expenditure Panel Survey (MEPS). Across these and other data sources, children and youth with SHCN or disability appear to be at greater risk for a range of health problems as well as unmet health care needs. Population-based data are crucial not only for identifying these problems, but also for tracking the success of efforts to address them.