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AUCD - Responsiveness Beyond the Advisory Board: Inclusive Research Design and Practice

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pdf File Driving Change Agenda and Notes Template.pdf (230KB) [download]

pdf File Roundtable Questions (12KB) [download]

Sunday, November 11, 2018 9:00 AM - 11:00 AM

Location: Renaissance West

Session Description

Hosted by AUCD's Research and Evaluation Council, this Driving Change Session will share different ways to design and accomplish inclusive research projects that authentically include people with disabilities in each stage of the research process. Panelists with both qualitative and quantitative experience will discuss the design phase, data collection, and analysis and dissemination.

Learn, share, and discuss innovative and thoughtful ways to ensure that people with disabilities are included in the research process from beginning to end. Participants will have time to think about and address theoretical ideas about expertise in research allowing them to ask themselves: Are our inclusive research efforts based in collaborations with marginalized people deferring to their expertise? Are we working "on" marginalized people or "with" marginalized people?


Celia Feinstein, MA, Institute on Disabilities at Temple University

Karen Heath, MS, Center for Human Development at University of Alaska

Ronda Jenson, PhD, Arizona UCEDD at Northern Arizona University


Parthenia Dinora, PhD, Partnership for People with Disabilities at Virginia Commonwealth University


orange badge with letters CEU1.5 CEUs hours (social work) are available for this session through the University of Minnesota School of Social Work. Learn more, including how to get your certificate.


About our Speakers

Photo of Celia FeinsteinCelia Feinstein, MA

Celia Feinstein is the Director of the Institute on Disabiltiies at Temple University. She has extensive experience working with people with disabilities and families through her training, technical assistance, and research activities, specifically in the areas of leadership development, community-based training and technical assistance, quality of life assessment and waiting list development and management. Ms. Feinstein has also done a significant amount of work in the area of deinstitutionalization and has published extensively. She has also been extremely involved in the development of the self-advocacy and family support movements in PA and provided consultation to many states in regarding deinstitutionalization policy and research, quality of life assessment and waiting list strategies. Ms. Feinstein has served on legislative committees regarding waiting list issues and has served on a number of community and professional boards and committees including the Developmental Disabilities Council, the Disability Rights Network of PA, The American Association on Intellectual and Developmental Disabilities (AAIDD), the Association of University Centers on Disabilities (AUCD), and Vision for Equality.


Photo of Karen HeathKaren Heath, MS

Karen Heath is the Associate Director/Director of Research and Evaluation at the University of Alaska Anchorage Center for Human Development. Ms. Heath has an MS in Vocational Rehabilitation and over 30 years of experience in the disability field. Currently, she leads a team of researchers who conduct disability research in the areas of health, justice and employment.

Photo of Rhonda JensonRonda Jenson, PhD

Dr. Ronda Jenson is an Associate Professor and Director of Research at the Arizona Institute for Human Development at Northern Arizona University. With an emphasis on bridging research to practice, she has assisted multiple state and community partners with evaluation of current practices, using data to monitor effectiveness, and designing supports for improving practices and systems. An important component of her work has been discovering ways to improve data visualization and foster data-driven problem solving.



Photo of Parthy DinoraParthenia (Parthy) Dinora, PhD

Parthy Dinora, PhD, an Associate Director for the Partnership for People with Disabilities at Virginia Commonwealth University, has worked in the disability field for over 21 years. She manages multiple “community living” federal research projects examining outcomes for people with developmental disabilities. She is currently working on two intervention-based research projects supporting people in understanding healthy and unhealthy relationships and how to talk to medical professionals about health priorities. As the parent of a 12 year old with developmental disabilities, she is also very interested about factors the influence parent decision-making and has published research in that area.