Making It Real: Participatory Action Research in UCEDDs

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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
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Session Overview

• Mission(s) Review
• What is PAR?
• Purpose of Grant
• Goals and Outcomes
• PAR Toolkit
• Timeline
• Conclusion

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Missions
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How are academic researchers perceived?
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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

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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).
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Challenges and Benefits to using PAR
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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
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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

Turnbull, Friesen, Ramirez,1998 Boyce Lysack,
2000
Israel, et al., 1998 Lopez, 2005
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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
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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
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Project Funding

• 10/05, ADD awarded the Oregon Institute on
  Disability Development (OIDD) and AUCDs
  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.

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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!

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Goal and Outcomes
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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

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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

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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

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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

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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
• Users Guide

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

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PARtoolkit created by

• Utilizing a portal system
• Metadot provides centralization of information
  in a single web space.
• Ensuring full accessibility

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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
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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
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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
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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

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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 AUCDs Annual Conference
• Provide training and assistance

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Oct. 06 Oct. 07

• Tasks to complete
• Create Users Guide
• Revise and add materials based on feedback
• Disseminate
• Provide Training and Assistance
• Transfer to AUCDs Share Point
• Translation into Spanish

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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

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Additional Information

• Angela Weaver, M.Ed
• PAR Project Coordinator
• OIDD
• 503-494-1205
• weaverro_at_ohsu.edu
• Susan Yuan, Ph.D.
• Associate Director
• Center for Disability and Community
• Inclusion
• 802-656-8166
• susan.yuan_at_uvm.edu
•  

Gordon Richins AUCD COCA Co-Chair Consumer
Liaison Center for Persons with Disabilities Utah
State University Ph. 435-797-2832 gordon_at_cpd2.usu.
edu