Background: Disability prevalence estimates are used to identify populations, establish priorities and allocate funding for a broad range of federal, state, and local initiatives. Increasingly, these estimates are based on a set of six questions developed and tested for use in the American Community Survey (ACS). A key assumption about the ACS disability screeners is that they sufficiently capture the entire population of people with disabilities, but some studies indicate that certain disability groups are underrepresented.
Objectives: The objective of this study is to explore potential underrepresentation of certain disability groups identified by the ACS disability questions.
Methods: We compared disability prevalence rates from two data sources for adolescents with disabilities, aged 14 to 16, who receive Supplemental Security Income (SSI, n = 2051). The Social Security Administration (SSA) provided disability determination data for each adolescent, and adolescents (or proxy-rater) provided baseline self-report data about functional limitation based on the six ACS disability questions.
Results: Approximately 17% of the sample did not endorse any ACS questions. Excluding SSA categories with cell counts less than 10, the top five conditions not captured by ACS questions included respiratory conditions (38%), mood disorders (28%), other mental disorders (27%), schizophrenic and other psychotic disorders (27%) and developmental disorders (20%).
Conclusions: Our findings suggest that people with mental health and developmental disabilities and those with respiratory conditions are among those groups under-represented by the ACS disability questions. Changes or additions to ACS questions should be considered to ensure that all disability groups are addressed in public health planning.
Keywords: Disability; Measurement; Prevalence; Surveillance; Transition.
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