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NCHS

National Survey of Children with Special Health Care Needs

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.

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 Administration. 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 Health.
  • 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 Health
    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 Administration.
  • 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 Health
    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

  • In addition to the core questions regarding which children with special health care needs have medical homes, adequate health insurance, access to needed services, and adequate care coordination, this survey includes questions pertaining to Medicaid and the State Children's Health Insurance Program (SCHIP) for uninsured children from low-income households.
  • Sponsor(s): Primary funding for this project is provided by the Maternal and Child Health Bureau of the Health Resources and Services Administration and secondary funding from Office of the Assistant Secretary for Planning and Evaluation of the Department of Health and Human Services.
  • Period of Data Collection: October 2000-April 2002
  • Sample size: Completed 38,866 CSHCN interviews in the main sample
  • Sampling Frame: Children under age 18 years
  • Data Collection: Data are collected over the household landline telephone. All children living in a household are screened for special health care needs. If more than one CSHCN is living in a household, one is randomly selected to complete the interview. Data collection was conducted under contract with Abt Associates Inc.
  • Flowchart 79 KB
  • Fact Sheet 109 KB
  • Data Resource Center for Child and Adolescent Health
    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.

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