Affiliation:
1. Gloria Krahn, Oregon State University.
2. Katherine Cargill-Willis, Administration for Community Living.
3. Lynda Bersani, Western Oregon University.
4. Theresa Moore, Arizona State University.
5. Jennifer Johnson, Administration for Community Living.
Abstract
Abstract
Through focus groups, adults with intellectual and developmental disabilities (IDD) provided their priorities for health equity data, surveys, and information dissemination by U.S. federal agencies. Participants reported privacy concerns about sharing information, need for better data to promote access to quality health care and services, and need for information on social contexts that influence quality of life. Data should include functional limitations, health risks, and priorities for health care, and should support choice and self-determination. Adults with IDD believe parents or support persons do not always share their views, raising concerns about proxy reporting. Surveys and information need to use clear language, visual aids, and provide neutral supports. Information should be shared broadly, including to persons with IDD and families, health care professionals, and policy makers.
Publisher
American Association on Intellectual and Developmental Disabilities (AAIDD)
Subject
Psychiatry and Mental health,Community and Home Care,Developmental and Educational Psychology,Education,Pediatrics, Perinatology and Child Health
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