M aking It Real: Participatory Action Research in UCEDDs

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

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

3. Missions Oregon Health & Science University

4. How are academic researchers perceived? Oregon Health & Science University

5. 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

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

7. Challenges and Benefits to using PAR

8. 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

9. 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

10. 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

11. 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

12. 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

13. 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

14. Goal and Outcomes

15. 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

16. 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

17. 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

18. 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

19. 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

20. 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

21. 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

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

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

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

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

26. 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

27. 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

28. 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

29. 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

30. Additional Information Angela Weaver, M.Ed PAR Project Coordinator OIDD 503-494-1205 weaverro@ohsu.edu Susan Yuan, Ph.D. Associate Director Center for Disability and Community Inclusion 802-656-8166 susan.yuan@uvm.edu Gordon Richins AUCD COCA Co-Chair Consumer Liaison Center for Persons with Disabilities Utah State University Ph. 435-797-2832 gordon@cpd2.usu.edu Oregon Health & Science University