Children with Special Health Care Needs in Context: A Portrait of States and the Nation 2007 Chartbook

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Introduction

This chartbook uses the 2007 National Survey of Children’s Health (NSCH) to report on recent findings on children with special health care needs (CSHCN) in the United States. The NSCH provides a unique view of CSHCN in the context of where they live, play and go to school. It also allows comparisons to children without special health care needs.

Children with special health care needs (CSHCN) are defined in the National Survey of Children’s Health as those who have one or more chronic physical, developmental, behavioral or emotional conditions for which they require an above routine type or amount of health and related services. Based on this definition of CSHCN, as set forth by the Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau (MCHB),¹ recent data show that 14-19 percent of children in the United States have a special health care need, representing over 1 in 5 households with children.*

The 2007 NSCH is a national, parent-reported telephone survey sponsored with funding and direction from the Health Resources and Services Administration’s Maternal and Child Health Bureau and conducted by the Centers for Disease Control and Prevention’s National Center for Health Statistics. The survey, also conducted in 2003 and again in 2011, provides a consistent source of data on the health, community and family-related experiences of children with and without special health care needs in the nation and in each state. The 2007 version of the NSCH represents the most recent national and state-representative data about CSHCN and children without special health care needs (non-CSHCN). All of the estimates presented here are based on parents’ reports, and only those differences that are statistically significant are included. A technical description of the survey methodology is available at the Data Resource Center for Child and Adolescent Health .

Children with special health care needs come from all racial and ethnic groups, ages, and family income levels. CSHCN encompass a wide variety of health conditions, with most children having more than one condition. All CSHCN require special health care services for one or more ongoing health conditions. However, these children naturally vary in their functional abilities. Nearly all CSHCN experience some type of functional difficulty. Yet, many are nonetheless able to participate in daily activities like other children their age, while others are significantly affected by their conditions.

This chartbook both reports on topics not addressed in other national surveys on CSHCN and provides a comparison of CSHCN in the United States to those children who do not have ongoing special health needs, with specific attention to the following focus areas:

• Health Behaviors and Risks including health-promoting factors such as breastfeeding and exercise, and risks such as obesity and developmental delay. For example, CSHCN were less likely to exercise at least 4 days a week and more likely to be overweight or obese than children without special health care needs.
• Insurance, Access and Quality of Care, including health insurance status and adequacy, preventive medical and dental care, screening for developmental disorders, access to specialist care and mental health care, and the presence of a medical home (ongoing, comprehensive, coordinated, family-centered care). While CSHCN are more likely than other children to have consistent insurance, that insurance is less likely to meet their needs and they are less likely than non-CSHCN to receive care in a setting that meets the criteria for a medical home.
• Home and Daily Routines including important factors such as smoking in the household, television time, family meals, and adequate sleep. CSHCN are more likely than their peers to be exposed to secondhand smoke at home and to watch more than one hour of TV or videos per weekday.
• Family Well-Being and Relationships, including parental health, parental stress and coping, and the child/parent relationship. CSHCN are less likely to have parents whose health is reported to be excellent or very good, and are more likely to have parents who usually or always experience stress and who report that they are not coping very well with the demands of parenthood.
• School, Friends and Community, including school engagement, school attendance, problems at school, friends, activities outside of school, and neighborhood characteristics. School-aged CSHCN are less likely than other children to be engaged in school, are more likely to miss more than two weeks of school a year due to illness, and are much more likely to have repeated a grade in school since kindergarten.
• Summary indicators of health care quality, the home environment, and the neighborhood and school environment, to examine how protective or risk factors combine and differ among CSHCN and from children without special health care needs. CSHCN are less likely to meet baseline criteria for quality of care and are more likely to face health risks at home. Children with and without special health care needs are equally likely to have access to sidewalks, parks, libraries, and recreation centers in their neighborhoods.

In addition, the chartbook contains a State Data section which shows many indicators for each of the 50 states and the District of Columbia. An interactive version of each state page is also available at the Data Resource Center for Child and Adolescent Health . From the interactive pages, you can compare States and look at additional subgroups of children by characteristics such as income and type of insurance coverage.

The indicators presented in the chartbook represent an enriched approach to the analysis of the health and health care of CSHCN by:

• Assessing similarities and differences in CSHCN compared to children without special health care needs. For some indicators, CSHCN differ from non-CSHCN greatly. For others, however, CSHCN perform similarly to their peers without special needs.
• Comparing outcomes among the 40 percent of CSHCN with less complex service needs (defined as CSHCN whose main health services need is prescription medications) to the 60 percent of CSHCN with more complex service needs (defined as CSHCN requiring additional medical or educational services, special therapies, mental health services, or who experience limitations in their functional abilities, nearly always in addition to prescription medications). In many cases, the distinction between CSHCN represented in these two service complexity groups is more significant than the difference between CSHCN and children without special health care needs.
• Comparing indicators among CSHCN with emotional, behavioral, and developmental problems to CSHCN with other types of health problems. Over 40 percent of CSHCN have some type of emotional, behavioral, or developmental problem, and over 80 percent of these children also experience other types of health conditions. These children experience home, family and school differently than other CSHCN.
• Comparing indicators among CSHCN across different states and regions of the country. As these chartbook data show, states differ with regard to children’s health, family and community factors and health care system performance. Most states do not show the highest or lowest scores consistently. With few exceptions, state-level differences reflect true deviations from average state performance and are not driven by extreme outliers.
• Viewing trends in the data over the last 4-5 years by comparing data from the 2007 NSCH to data from the previous version of the NSCH, conducted in 2003. Some of the indicators were re-defined in 2007, so some of the indicators described here cannot be compared directly with the findings of the 2003 survey. Further information about the changes in the survey and the indicators can be found at the Data Resource Center for Child and Adolescent Health .

Additional information about the chartbook’s sources and analysis can be found in the Technical Appendix.

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