State and Local Area Integrated Telephone Survey

National Survey of Children with Special Health Care Needs

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The primary goals of this survey module are to assess the prevalence and impact of special health care needs among children in the US, and to evaluate change over time. This survey explores the extent to which children with special health care needs (CSHCN) have medical homes, adequate health insurance, access to needed services, and adequate care coordination. Other topics may include functional difficulties, transition services, shared decision-making, and satisfaction with care. Interviews were conducted with parents or guardians who know about the child’s health. More than 190,000 households with children throughout the US are screened to identify approximately 750 CSHCN in each State and DC. Strict confidentiality and privacy regulations apply to all contract and federal project staff for all data collected in this survey. For more information, see the NCHS confidentiality policy.

The NS-CSHCN was redesigned by HRSA’s Maternal and Child Health Bureau in 2016. It was combined with the National Survey of Children’s Health, an annual, cross-sectional, address-based survey that is fielded by the U.S. Census Bureau using both web-based and paper-and-pencil data collection. Data from the 2016 NSCH and beyond are now available from the Health Resources and Services Administrationexternal icon (HRSA) and Data Resource Center for Child and Adolescent Healthexternal icon.

2009-2010 National Survey of Children with Special Health Care Needs

Quick Facts and Additions

  • In addition to the content collected in previous surveys, this survey includes medication and treatment questions specifically for children with ADD/ADHD, a sample of cell-phone-only households, as well as an independent sample in the U.S. Virgin Islands. Unlike in 2005/6, a referent sample of children without special health care needs was not included.
  • Sponsor: Primary funding for this project was provided by the Maternal and Child Health Bureau of the Health Resources and Services Administrationexternal icon. Additional funding for specific questions was provided by the CDC’s National Center for Birth Defects and Developmental Disabilities and the Lucile Packard Foundation for Children’s Healthexternal icon.
  • National Survey (50 states and DC)
    • Period of Data Collection: July 2009 – March 2011
    • Sample design: Cross-sectional telephone survey of households with at least one resident child aged 0 to 17 years at the time of the interview; complex sample design, with stratification by state and sample type (landline or cell phone) and with clustering of children within households
    • Sample size: Completed 40,242 detailed CSHCN interviews
  • U.S. Virgin Islands
    • Period of Data Collection: July 2010 – March 2011
    • Sample design: Cross-sectional telephone survey (landlines only) of households with at least one resident child aged 0 to 17 years at the time of the interview; complex sample design with clustering of children within households.
    • Sample size: Completed 344 detailed CSHCN interviews
  • Respondent: A parent or guardian with knowledge of the health and health care of the children in the household.
  • Data Collection: All children living in the household were screened for special health care needs. If multiple CSHCN lived in the household, one was randomly selected to be the subject of the detailed interview. In households with one child with special health care needs, that child was selected to be the subject of the detailed interview. Data collection was conducted under contract with NORC at the University of Chicago.
  • Data Resource Center for Child and Adolescent Healthexternal icon
    Easy to use, interactive data query tool to view and compare tables and charts of state, national, and regional survey findings including profiles on key performance indicators

View/Download

Persons with disabilities who experience problems accessing PDF files should contact nchsed@cdc.gov or call 301-458-4688.

2005-2006 National Survey of Children with Special Health Care Needs

Quick Facts and Additions

  • In addition to the content collected in previous surveys, this survey includes a national referent sample of children without special health care needs
  • Sponsor: Maternal and Child Health Bureau of the Health Resources and Services Administrationexternal icon.
  • Period of Data Collection: April 2005 – February 2007
  • Sample size: Completed 40,840 CSHCN interviews in the main sample; completed 6,113 interviews of children without special needs in the referent sample
  • Sampling Frame: Children under age 18 years
  • Data Collection: Data were collected over the household landline telephone. All children living in a household were screened for special health care needs. If more than one CSHCN is lived in a household, one was randomly selected to complete the interview. Data collection was conducted under contract with the University of Chicago.
  • Data Resource Center for Child and Adolescent Healthexternal icon
    Easy to use, interactive data query tool to view and compare tables and charts of state, national, and regional survey findings including profiles on key performance indicators

View/Download

Persons with disabilities who experience problems accessing PDF files should contact nchsed@cdc.gov or call 301-458-4688.

2001 National Survey of Children with Special Health Care Needs

Quick Facts and Additions

View/Download

Persons with disabilities who experience problems accessing PDF files should contact nchsed@cdc.gov or call 301-458-4688.

Page last reviewed: February 22, 2022
Content source: National Center for Health Statistics