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Underrepresentation of adolescents with respiratory, mental health, and developmental disabilities using American
Catherine Ipsen1, Cathy Chambless2, Noelle Kurth3
1University of Montana, Rural Institute for Inclusive Communities, 52 Corbin Hall, Missoula, MT 59812, United States.
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.
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