Perspectives from the Trenches: Using CBPR to Study Violence in Adults with Developmental Disabilities 2010 AUCD Annual Meeting November 1, 2010

Presenters Rosemary B. Hughes, Ph.D. Rebecca E. Goe, M. A. The University of Montana UCEDD

Authors Katherine McDonald, Ph. D. Erin E. Stack, B.A. Portland State University Dora Raymaker, M.S. Autistic Self Advocacy Network

Authors Emily M. Lund, B.A. Rebecca E. Goe, M.A. Rosemary B. Hughes, Ph.D. The University of Montana We acknowledge our many partners who contribute greatly to the success of this project.

About the Project RTOI funded by AUCD and CDC Contract #439 under Cooperative Agreement #811 AUCD Project Officer: Adriane Griffen, M.P.H., CHES CDC Project Officer: Pam Costa, M.A.

Purpose of the Project To identify strategies for including people with developmental disabilities in violence research To address the impact of violence on the health of people with developmental disabilities

Studies in the Project Measurement Adaptation Study – Adaptation of measures – Pilot studies CBPR Evaluation Study Disability, Violence, and Health Survey

Partners in the Project The Developmental Disability Community in OR and MT Steering Committee Community Advisory Boards Consultants Research Associates/assistants

Steering Committee 4 representatives with DD from our partnering organizations : -Autistic Self Advocacy Network -Bitterroot People First -Summit Independent Living Center -Self Advocates as Leaders 4 investigators

Community Advisory Boards Each state has a 6-member Community Advisory Board (CAB) that includes four people with DD, one family member of a person with a DD, and one service provider of people with DD. CABs meet at least once monthly

CAB Activities Advise on selection of measures for use in the survey study Advise on measure adaptation (e.g., alternative wording, links for more detail or definition of terms used, adding pictures or new items)

CAB Activities Advise on recruitment procedures, consent materials, and study protocol for the survey study Advise on revisions after taking the computerized survey via role play

CAB Activities Advise on revisions of the computerized survey to assure feasibility, accessibility, and administration of 90 minutes or less Advise on solutions to problems experienced in the field

CBPR Evaluation Study Year 1 Katherine McDonald, Ph.D. Erin E. Stack, B.A. Portland State University

CBPR Evaluation Methods – CAB focus groups – Investigator and Steering Committee bi-monthly reflections – Listserv communication – Meeting minutes

Preliminary Findings: CAB Focus Groups 1. Participating in the CAB is positive, important, unique, and rewarding.

“[There are] different insights with different people like the professional and the self- advocates and the investigators … you … learn from one another.”

“It is revolutionary and ground breaking and who doesn’t want to be in on something that is revolutionary and ground breaking?”

Preliminary Findings: CAB Focus Groups 2. CBPR can change beliefs, give voice, and improve science

“I am really enjoying that this project … is actually asking the people who have the expertise.”

“People have respected me … people don’t treat me like I have a disability. They treat me like I am a person.”

Preliminary Findings: CAB Focus Groups 3. Addressing violence is important and empowering.

“The subject of the research project itself is something that I think needs to be examined”

“ People tend to think people with disabilities are immune to violence.”

Preliminary Findings: CAB Focus Groups 4. The CAB is a place of shared understandings, mutual respect, equality, and care

“There are not too many opportunities that I have to contribute to something without having to worry about how I am different than other people … I don’t need to explain myself and I can be myself. And then I can relax and then focus on what I am here to do.”

Preliminary Findings: CAB Focus Groups 5. Early confusion and uncertainty has dissipated with experience.

“When I first was coming into it, I thought I was being research[ed]”

Implications of Preliminary Findings The way we conduct science has implications for how deep and nuanced we understand focal constructs CBPR may improve relevance, construct validity and representativeness

Implications of Preliminary Findings Choosing to use CBPR signals respect for the expertise and abilities of the study population CBPR may not be appropriate for all research, and demands appropriate skills, resources, and expertise

Implications of Preliminary Findings There is power and healing in addressing "sensitive" topics Establishing positive, well-intentioned relationships can help individuals navigate challenging moments in collaboration

Thank You for Your Participation 32

Contact Information Rosemary B. Hughes, Ph.D. Principal Investigator The University of Montana Rural Institute on Disabilities Phone: Voice/TTY

Contact Information Katherine McDonald, Ph.D. Portland State University Department of Psychology Tel: (503) 725 – 3995

Resources National Domestic Violence Hotline SAFE (7233) (TDD) Spanish Speaking

Resources RAINN National Sexual Assault Hotline HOPE (4673) | Free. Confidential 24/7

Resources SafePlace Disability Services ASAP SAFE (7233) or TTY for the Deaf community