University Centers for Excellence in Developmental Disabilities (UCEDDs) are federally designated research, policy/systems change development centers located in each state across the country. The mandate for funding is that these centers work with and on behalf of people with developmental disabilities and their family members and bridge the gap from the academic and research world to the communities of people with disabilities, their families and those who serve them. 

While this work leads the field, it is not always been based on full partnerships between researchers and individuals with disabilities and their family members.  Such partnerships are critical for sound research, systems change and quality improvement.  There is an increased awareness by UCEDD professionals and community members with disabilities, of the need for full participation by people with disabilities and family members in the planning, implementation and evaluation of UCEDD-based research. 

In response to this awareness and need, the Administration on Developmental Disabilities awarded and funded the “Making It Real:  Participatory Action Research in University Centers of Excellence in Developmental Disabilities” grant to the Council on Consumer Advocacy, a standing Council of the Association for University Centers on Disabilities (AUCD), and the Oregon Institute on Disability & Development (OIDD) at Oregon Health and Science University, to develop a PAR Toolkit that will include resources, promising practices and tools to assist both individuals with developmental disabilities and their family members, and UCEDD programs with successful and meaningful strategies for partnering in research.

The purpose of this project is to develop educational modules on participatory action research with the creation of a toolkit by modeling an inclusive approach.  Through the creation of the toolkit, every UCEDD will be able to access resources that will enhance and increase Participatory Action Research and support initiatives that are most meaningful to people with disabilities and their families. It will also be available to individuals, advocacy groups and state consumer councils.

Consider a PAR Implementation Workshop for your State/UCEDD/Community to help understand and implement the PAR Toolkit.

For information about the PAR Implementation Workshop and costs, please contact Dean Westwood.

Dean Westwood, MSW, Director
Center on Self-Determination
707 SW Gaines Street
Portland, OR 97239
(voice) 503-494-2738
7.1.1 Relay Service
(fax) 503.494.6868

westwood@ohsu.edu