Making It Real Participatory Action Research in UCEDDs

Making It Real: Participatory Action Research in UCEDDs Building the UCEDD of Tomorrow May 11, 2006 Angela Weaver, M. Ed Oregon Institute on Disability and Development Oregon Health and Science University Bethany J. Stark, MA Parent Coordinator/Program Rep. UCLA Tarjan Center Council on Community Advocacy COCA Oregon Health & Science University

Session Overview Mission(s) Review What is PAR? Purpose of Grant Goals and Outcomes PAR Toolkit Timeline Conclusion Oregon Health & Science University

Missions ADD AUCD PAR COCA Oregon Health & Science University UCEDD/ OIDD

How are academic researchers perceived? Oregon Health & Science University

What do we know? Increased awareness for full participation of people with DD and family members in UCEDD-based research Individuals with DD and family members interested in taking an active role in all aspects of research Everyone needs resources, materials and opportunities to increase the capacity of UCEDDs to engage in PAR processes Oregon Health & Science University

Levels of Participation in Research Typically Community as Res. Leaders / Res. as ongoing Advisors Researchers and Community as Co. Researchers does reflect PAR Res. as Leaders & Com as ongoing Advisors Typically does not reflect PAR Community occasional Reviewers & Consultants Com as Advisory Board Members Com as Research Turnbull, Friesen and Ramirez (1998) from the Part. work of Arnstein (1969) & Bailey (1994). Oregon Health & Science University

Challenges and Benefits to using PAR Oregon Health & Science University

Challenges to using a PAR approach Very time consuming - for all partners Increased funding required Trust among partners is fragile Who to include in partnership – to ensure representation? Israel, et al. , 1998; Lopez, 2005; Turnbull, Friesen, Ramirez, 1998 Oregon Health & Science University

Challenges to using a PAR approach Timely dissemination of findings Need to change institutional rules Contrasting agenda and modes of operation by all partners Including partners in all ‘day-to-day’ decision making Israel, et al. , 1998; Lopez, 2005; Turnbull, Friesen, Ramirez, 1998; Boyce & Lysack, 2000 Oregon Health & Science University

Benefits to using a PAR approach: Contributions to p/w/d, families & science Enhances relevance & use of data Enhances intervention design & implementation Increases quality & validity of research/findings Has potential to translate research findings to guide development of further interventions & policy change Israel, et al. , 1998; Turnbull, Friesen, Ramirez, 1998 Oregon Health & Science University

Benefits to using a PAR approach: Contributions to p/w/d, families & science Provides resources for communities involved Joins partners with diverse expertise Increases trust & bridges cultural gaps among partners Interventions & knowledge gained directly benefit the community Israel, et al. , 1998; Turnbull, Friesen, Ramirez, 1998 Oregon Health & Science University

Project Funding 10/05, ADD awarded the Oregon Institute on Disability & Development (OIDD) and AUCD’s Council on Community Advocacy (COCA) a small one-year grant titled: MIR: PAR in UCEDDs. Possible opportunity for additional time and funding for one more year. Oregon Health & Science University

Purpose of Grant Engage the UCEDD research network and Engage people with disabilities and families within the COCA network in research activities to… Develop a PAR Toolkit! Oregon Health & Science University

Goal and Outcomes Oregon Health & Science University

Goal Every UCEDD and its constituents will have access to: A set of tools and resources Strategies to enhance and improve PAR Methods to engage p/w/d and families Mentors Oregon Health & Science University

Outcomes for UCEDDs Forum for sharing Broader perspective and depth of knowledge on research topics Multiple connections with the p/w/d and family members Broader dissemination of findings Help with future direction Oregon Health & Science University

Outcomes for P/W/D and Families Greater participation. Builds trust and relationship Increased capacity to engage in research Resources & information Future trainers and new leadership On-going social and peer support Inclusive communities Oregon Health & Science University

Long-term outcomes Stronger community partnerships Greater likelihood that research will impact community Greater likelihood that outcomes will have sustaining benefits Model for PAR that can be utilized beyond the AUCD network Oregon Health & Science University

Components of the PARtoolkit Resources Literature Review Modules – ppt, handouts, templates, etc. Working with your CAC IRB approval process Promising practices Mentor Directory “Chat room” – for sharing User’s Guide Oregon Health & Science University

Stages of PAR Delineating Problem Choosing Action Design and Assessment Engaging in Action Gathering Data Reflexive Knowledge Taylor, Braveman, & Hummel, 2004 Oregon Health & Science University

PARtoolkit created by: Modeling an inclusive approach Funding from ADD underscores/supports commitment to PAR MIR Teams – Development and Feedback: COCA members, CAC members, people with disabilities, family members, and UCEDD professionals PAR Grant Staff - p/w/d, family member Oregon Health & Science University

PARtoolkit created by: Utilizing a portal system Metadot provides centralization of information in a single web space. Ensuring full accessibility Oregon Health & Science University

Chair Development Team Susan Yuan, Ph. D. Associate Director AUCD COCA Co-chair Center for Disability and Community Inclusion University of Vermont Cathy Haarstad NDCPD at Minot State University Consumer Affairs Minot, ND Paul Mekaska CAC Member OKC, OK Oregon Health & Science University G. Denise Lance, Ph. D. Consumer Activities Coordinator for the Kansas University Center on Developmental Disabilities (KUCDD)

Development Team Melanie Tyner. Wilson, Chair CAC at IHDI, KY Sandra Skaar, Health Educator Shelley Dumas, Ph. D. UNM/HSC/Dept of Peds/ Director of Community Center for Development and Disability Education Texas Center for Disability Studies The Info. Center for New Mexicans with Disabilities Oregon Health & Science University Becky Raabe, M. A. Child Find and Parent Information Network Coordinator ADE, Exceptional Student Services Flagstaff, AZ

Chair Feedback Team Clare Collins Chair, CAC Norb Ryan State ADA Coordinator Frankfort, University of Maine Kentucky Center for Community Inclusion and Disabilities Studies Gordon Richins Sharon Hauss AUCD COCA Co-Chair Indiana Institute on Disability and Community Indiana University, Bloomington Consumer Liaison Center for Persons with Disabilities Utah State University Oregon Health & Science University Bethany J. Stark Parent Coordinator/ Program Rep. UCLA Tarjan Center/Lili Claire Family Resource Center

Timeline 10/05 -10/06: Oct. 05 – Current Tasks completed: Subcontract with AUCD/COCA Establish MIR Teams Conduct monthly conference calls Establish Metadot System Train MIR Teams on Metadot System Develop PAR survey/needs assessment Collect PAR promising practices and resources Oregon Health & Science University

Current – Oct. 06 Tasks to complete: Obtain and analyze PAR surveys Develop PAR Toolkit materials Recruit for and develop the PAR Mentor Directory Recruit and establish “Expert” Panel Ensure PAR Toolkit accessibility Present at AUCD’s Annual Conference Provide training and assistance Oregon Health & Science University

Oct. 06 – Oct. 07 Tasks to complete: Create Users Guide Revise and add materials based on feedback Disseminate Provide Training and Assistance Transfer to AUCD’s Share Point Translation into Spanish Oregon Health & Science University

Conclusion The PARToolkit is your toolkit! Designed by UCEDD, p/w/d and family members for UCEDD, p/w/d and family members An effective tool to stimulate research with people who are often under-represented and hard to reach Builds stronger partnerships Converts knowledge into action Creates & sustains conditions that promote full participation and healthy lifestyles Oregon Health & Science University

Additional Information Angela Weaver, M. Ed PAR Project Coordinator OIDD 503 -494 -1205 weaverro@ohsu. edu Gordon Richins AUCD COCA Co-Chair Consumer Liaison Center for Persons with Disabilities Susan Yuan, Ph. D. Utah State University Associate Director Ph. 435 -797 -2832 Center for Disability and Community gordon@cpd 2. usu. edu Inclusion 802 -656 -8166 susan. yuan@uvm. edu Oregon Health & Science University