OHSU Center on Self-Determination

Oregon Health & Science University

By Bonnie Shoultz
Associate Director
National Resource Center on Supported Living and Choice
The Center on Human Policy
Syracuse University

Laurie Powers, Co-Director of the OHSU Center on Self-Determination, was interviewed during a very busy work period in July 2003. Powers is Associate Professor of Pediatrics, Psychiatry, and Public Health at the Oregon Health & Science University (OHSU). The Center on Self-Determination identifies, develops and shares approaches that promote the self-determination of people with disabilities and ongoing health conditions. The Center currently operates 19 projects, some of which include:

• National Youth Leadership Network,
• Medicaid Reference Desk,
• Voters Education Project,
• Project VOTE,
• Pathways to National Service, and
• Self-Advocates As Leaders

Each of the projects named, and others as well, works closely with people with intellectual and developmental disabilities to develop model programs and public policies that support self-determination, and to produce materials and conduct training for professionals, self-advocates, and community organizations.

According to Powers, the projects share a common research protocol that requires a brief statement be developed, written in straightforward language, that describes the conduct of the research and the presentation of its findings. For example, if a focus group study has been completed, the researcher would develop a one-paragraph statement about what was done, followed by two pages that excerpt quotes by the participants. She says, "straightforward language is helpful for everyone, including professionals, and doesn't have to be 'simple,' just highly articulate."

The National Youth Leadership Network and several other projects have an "Access for All" committee made up of people with intellectual and other disabilities that edits and approves every informational, training, or research document that is produced.

Written materials for the OHSU Center's projects are developed in conjunction with leaders from various disability groups, and can be produced in the formats needed by different people.

Powers identified a number of considerations involved in making materials accessible. She said, "tone, inclusiveness, sensitivity to cultural issues, and straightforwardness all have to be examined."

Even then, she said, "accessibility is very difficult, especially when one is doing cross-disability work. There is a great deal being done in terms of technology that will interface with the needs of the user, but many users have little access to the newer technologies. For example, earlier versions of JAWS™, screen reader software used by people with visual impairment or blindness, were not able to read tables that were not in Excel™ format. Across the board, sites that are good for some users are often not good for others, and it is very difficult to make a site accessible to all."

"The key to it all," says Powers, "is that you have to have leaders from all the disability groups you are targeting; and they must be people who have the sensitivity that's needed, including toward their own group."

Powers points out that the OHSU Center on Self-Determination Web site, http://www.selfdeterminationohsu.org, is not a model of advanced design, in part because there is no one person whose sole job is to develop the site. Instead, many people are involved on a very part-time basis. While a relatively small percentage of Center funds is devoted to the Web site or to marketing their products, staff do plan to continue to develop and improve the site.

The OHSU Center collaborates with The Arc of the United States on its Medicaid Reference Desk, an easy-to-use Web site http://www.thedesk.info/ that provides information about Medicaid to people with disabilities (see related article TheDesk.Info:The Medicaid Reference Desk). The Desk provides information in plain language about Medicaid-funded services in 11 states. This is one of a very few Web sites dedicated to the idea that very complex programs can be presented in an easy-to-use form that is accessible to people who have difficulty understanding technical language.

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