Holding 10,000 Details [PDF]

Productive Relationships Between
Parents of People with Developmental Disabilities and Service Workers

John O’Brien & Connie Lyle O’Brien


What we did to prepare this paper

Parents and guardians, people with developmental disabilities, direct service workers, administrators, and people who are exploring the new role of service broker met with us to share their ideas and experiences in 20 discussion groups that convened in Madison, Oshkosh, and Milwaukee between April 1999 and December 2000. Most of the parents we met are legal guardians of people with developmental disabilities who range in age from their teens into their 60’s, with most in their 20’s and early 30’s. The service brokers we met were part of their county’s involvement in Wisconsin’s Robert Wood Johnson spon- sored Self Determination Initiative

Discussion groups each lasted about two hours and included either people with developmental disabilities, or parents, or direct service workers, or administrators, or service brokers. Most groups included about 15 people, though more than 30 people attended two of the parent discussion groups. On 17 December 1999 a large group, including a number of people involved in earlier discussion groups, met for the day to consider a summary of what we heard from the discussion groups. This lead to a second round of discussions, which were summarized in a meeting on 12 December 2000. Each meeting was recorded on wall charts, which group participants reviewed and corrected.


This report contains our reflections on what we learned by listening to the diverse voices in each group discussion. By repeatedly reviewing and discussing our summaries of the discussion groups, and by thinking about the ways in which discussion group discussions seemed to get stuck around particular issues, we identified a set of key themes to organize the report. Because we looked for links among the different groups, our synthesis may understate or even miss points that were important in particular discussions. Participants didn’t agree with one another on many issues during the discussion groups and they would not necessarily agree with the points we make here.