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Valuing Inclusion: Collaborative Research with

Persons with Disability

Mazna Patka, Colleen Kidney, Erin Stack, Katherine McDonald, PhDPortland State University

Society for Community Research & ActionJune, 2011

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AcknowledgementsFunders– Centers for Disease Control / Association of

University Centers on Disabilities– National Institutes of Health– Oregon Clinical and Translational Research Institute

(a component of NIH)– Oregon Health Sciences University Medical Research

Foundation– Portland State University Faculty Enhancement

Grant

Academic & Community Partners– Elesia Ashkenazy– Cody Boisclair– Sebastian Dern– Lisa Howard– Rosemary Hughes – Marsha Katz – Darren Larson– Dr. Christina Nicolaidis, – Mary Oschwald– Eddie Plourde– Laurie Powers– Dora RaymakerOrganizations

– Autistic Self-Arc of Multnomah/ Clackamas Counties

– Advocacy Network– Self Advocates As Leaders– Summit Independent Living Center

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Developmental Disabilities• Originates before the age of 22• Expected to continue indefinitely• Limited functioning in major life activities• Cognitive and/or physical

• Examples:– Autism– Down Syndrome– Intellectual Disability– Blindness– Deafness

(American Association on Intellectual and Developmental Disabilities, 2011)

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Traditional Disability Research

• Focus on children creates perception of persons with disabilities as static, eternal children

• Deficit-oriented • Something intrinsically wrong with individuals• Proxy report (parents, teachers, professionals)• Further marginalization

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Nothing About Us Without Us• Disability Rights Movement

• Community members actively involved

• Needed, relevant research aims

• Aims to empower individuals & create social, organizational & political change– Increase control

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Three Projects

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(1) Adults with Intellectual & Developmental Disabilities on Research Participation

• Qualitative study of the perspectives of adults with intellectual and developmental disabilities on participating in research.

• Research advisors with intellectual and developmental disabilities provide guidance on all aspects of the research:

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1: Recruitment2: Informed Consent

3: Interviews 4: Incentives

???

5: Analysis

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Bring together the academic community and the autistic community to develop and perform research projects relevant to the needs of adults on the autistic spectrum (Academic and Community Co-Directors, PIs, and Steering Councils)

• Healthcare Study 1: Mixed-methods study of healthcare disparities, experiences and recommendations

• Internet Use, Community, and Well Being: Survey of Internet use, connectedness and well-being

• Webtools: Mixed-methods study to develop webtools for effective communications with healthcare providers

• The Gateway Project: secure online registration system for ongoing research

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(2) Academic Autism Spectrum Partnership In Research & Education

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(3) Partnering with People with Developmental Disabilities to Address Violence

• Bring together academic partners with adults with developmental disabilities to:1. Develop safe, valid study materials; 2. Identify the physical and mental health outcomes an

correlates of IPV against people with DD;

• Steering Committee & Community Advisory Board (CAB)

• CBPR Evaluation Study

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Structures and Processes for Working Together

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Contributing to Research“Hey guess what? Have you hear of CBPR? I know how you can take your

research to the next level.”

•Attention to process for CAB meetings– Pre-meetings– Group guidelines/moderator, finger counts, specific tasks – Keep & change procedure– General high enthusiasm for CAB meetings

•Originally, less attention to formal process issues for Steering Committee & Investigator meetings

– CAB processes also help academics12

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Finger Count

One Finger -- Yay, I love it!

Two Fingers – It’s OK.

Three Fingers -- I am not sure, I need more information or discussion.

Four Fingers -- I don't like it, but I can live with it.

Five Fingers -- I hate this so much that I can't live with it.

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Nicolaidis, C., Raymaker, R., McDonald, K., Robertson, S., Dern, S., & Ashkenzy, E. (In Press). Collaboration strategies in non-traditional CBPR partnerships: Lessons from a geographically-dispersed partnership with autistic self-advocates. Progress in Community Health Partnerships: Research, Education, and Action.

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Benefits to Research

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Accessible Consent Procedures & Materials

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Accessible Research Participation

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Co-Learning• Opportunity to contribute, learn and build bridges between

diverse groups– Diverse expertise, knowledge, and skills– Develop bidirectional depth of understanding (research priorities,

interpretation of findings)

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

.. so just in general, helping the researchers with blind spots.

• Builds capacity to improve quality of life for persons with developmental disabilities

Giving people with dignity and respect they need… has been very valuable. That has been something we have been careful to exhibit here and something I have

learned by example of my fellow travelers on this project. 17

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Contact Information

Katherine McDonald, PhD

kmcdona@pdx.edu

http://www.pdx.edu/psy/katherine-mcdonald

http://www.aaspire.org/

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