On June 14, 2011 at our press conference announcing the release of our report, Still in the Shadows with Their Future Uncertain, The Arc’s long time friend and colleague, Dr. K. Charlie Lakin, offered the following remarks about the importance of this research. Charlie has now moved on from his position at the University of Minnesota to take the helm at the National Institute on Disability and Rehabilitation Research (NIDRR) of the U.S. Department of Education’s Office of Special Education and Rehabilitation Services. His comments at the press conference are well worth thinking about, and are as follows:

“Over my 25 or so years of association with The Arc as a member of various boards at the local, state and national level and as Chair of the Research Committee, one overarching idea has been that The Arc should always be a leader in the movement for people with intellectual and developmental disabilities (IDD) – the first and foremost authority on the issues that concern those individuals. And, the first rule of leadership is to always listen carefully to the source of one’s authority. The Arc’s moral authority is derived directly from listening to and reflecting in its actions the will of those in whose name it exists. It is individuals with IDD and their family members who founded The Arc, who currently sustain The Arc and who are the future of The Arc. They are The Arc.

“In that regard, it was important, even essential that The Arc engaged those primary stakeholders in providing the valuable information contained in the FINDS (Family and Individual Needs for Disability Supports) survey and summary report. . . . Advice is sometimes given that if one is not prepared to deal with the answer, then one shouldn’t ask the question. In asking the questions of this survey The Arc has challenged to respond not only in its advocacy, but also in service delivery. The Arc has committed itself to lead by its own example. It will become an organization to which the sizable majority people with developmental disabilities who want real work can turn to obtain real work. It will be an organization to which the majority of people who want support to live in their own homes or in homes with their family members can turn for in-home support. It will commit itself to divesting of the segregated vocational and congregate residential programs operating under its new, progressive logo. And as it has for 60 years it will continue to take the message of people with disabilities and their families to places of power to assure that the promises made to people with disabilities are promises kept.”

I invite you to dig into the data starting first with the FINDS report, Still in the Shadows with Their Future Uncertain, and then into the technical report and data tables if you are so inclined. Consider what it means for you and the people you care about and consider joining the movement or finding out more about what The Arc is doing for people with IDD.