Hello, I am Gordon Bonham, owner of Bonham Research, Cranberry Township, Pennsylvania. Measuring the quality of life of people with intellectual and other developmental disabilities (ID/DD) presents a number of challenges.
Lessons Learned: Although it is generally assumed that self response is better than proxy response when people have the ability to respond for themselves, how many people with ID/DD can respond for themselves and who decides? The Maryland Ask Me! Survey has eight years of experience collecting quality of life information for about 1,300 individuals each year sampled from the roles of the state disability administration. The survey follows the principles of participatory action research further than other published studies on outcomes for this vulnerable population by employing only interviewers who are part of the population with ID/DD.
About 30 interviewers with ID/DD are employed each year to interview their peers, and they have worked for an average of 3.2 years. The peer interviewers are more likely to be young and female and have less severe intellectual disabilities and communication impairments, but more likely to have cerebral palsy than the peers they interview. However, they tend to have the same experiences with habilitation, employment, residential and other support services as those they interview. They work in teams of two that allows non-readers and people unable to record answers to interview. The teams make the determination if a person has the ability to respond for him or herself, and find that three-fourths can, including one-fifth of those classified with profound intellectual disabilities. The peer interviewers also interview the proxies for those unable to respond for themselves, generally impressing families and staff with their abilities.
The 90 peer interviewers who have worked over the eight years of the statewide evaluation have contributed greatly to the quality of data used to guide state policy, enhance agency services, and inform consumers making choices for where to get services. In addition, they have personally benefitted from participation in the evaluation. A survey shows that their employment in research increased peer interviewers’ self-confidence, improved communications skills and created openness to new opportunities. Employment as interviewers provided one-fourth of them with their first paid community job experience and helped one-fifth to subsequently step into a better job or pursue further education or training. Research employment also helped one-fourth to move into more independent living, expand friendships, increase participation in clubs and groups, and increase advocacy.
Rad Resource: ASK ME! Survey http://www.thearcmd.org/programs/ask_me.html
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