Proxy Reports 1 PROXY REPORTS AND THEIR VALUE Proxy Reports and Their Value

The quality of life of people with intellectual disabilities is difficult to measure, and questions have been raised about both self-responses and proxy responses. The FY2004 Ask Me! Survey collected data from 1,091 self-respondents, and 764 proxies for 407 people who could not respond for themselves. Peer interviewers decided who could respond for themselves. Self-respondents answered more questions, answered the same questions as consistently, and had more reliable scales than did proxies. Two proxies for the same person agreed most on emotional well-being and least on self-determination. Two day staff proxies agreed most; family and staff proxies agreed least. Self and proxy response data can be combined for most analysis with the inclusion of a statistical control for who responded. Proxy Reports 3 Background Research since the late 1980's has asked people with intellectual disabilities to express their own views about their quality of life (Schalock and Verdugo, 2002). Their increased participation, however, has raised four basic issues: 1) who determines the capability of peopl