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Ever told had Downs Syndrome

Codes and Frequencies

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DOWNSYNEV reports whether the person has Down syndrome. Please see Comparability and Universe tabs for changes in universe and question wording between samples.


The Field Representative's Manual for 2001 forward defined Down Syndrome as "a congenital disorder characterized by moderate to severe mental retardation, slow physical development, and flattish skull and facial features." This definition was not routinely shared with respondents.

A related question asking whether the person has mental retardation (RETEV) is available for the same years as DOWNSYNEV.

This variable is part of the Disability Supplement (NHIS-D) in 1994 and 1995 that collects information on disability. NHIS-D included two household interviews: in Phase I all members of sample families were screened for any indication of disability; in Phase II persons with any indication of disability were followed-up for additional information. Phase I includes sensory, communication, and mobility problems; health conditions; activities of daily living and independent activities of daily living; functional limitations; mental health; services and benefits; special health needs of children; early child development; education; relationship to respondent; and perceived disability. Phase II includes four Disability Followback Survey (DFS) questionnaires: one for children, one for adults, one for elderly persons (69 years of age and over) without any indication of disability (also called the Supplement on Aging or SOA; only in 1994), and one for persons with a history of polio.


Changes in universe affect comparability between samples.

In 1994 and 1995, all persons in households that did not refuse to complete the National Health Interview Survey-Disability Survey (NHIS-D) Phase I questionnaire are included in the universe. In those years, the household respondent was asked to identify any persons in the family who have Down syndrome.

From 1997 on, this question was asked only of sample children under age 18. The household respondent was asked if he or she had ever been told by a doctor or health professional that the sample child had Down syndrome (or, from 1997 to 2003, Down's syndrome).


  • 1994-1995: Persons in the NHIS-D Phase I sample.
  • 1997-2018: Sample children under age 18.


  • 1994-1995, 1997-2018