SLIDE 1: People Power! Working Towards Truly Inclusive Disability Community Research Partnerships Community Living Equity Center Centro para la Equidad en Vida Comunitaria Co-Investigator Kimberly The, PhD Lived Experience (LE) expert Tyree Brown NCIL Program Director Mary-Kate Wells Alt text: Image of Community Living Equity Center logo featuring 3 people (2 with arms raised and one in wheelchair). Brandeis Logo. SLIDE 2: Overview of Presenters Co-Investigator Kimberly The, PhD Senior Research Associate Brandeis University Alt text: Image portrait of Kim The, a woman with black hair. Lived Experience Expert Tyree Brown Freelance Artist Brandeis University Alt text: Image portrait of Tyree Brown, a wheelchair user with black hair. Program Director Mary-Kate Wells National Council on Independent Living Alt text: Image portrait of Mary-Kate Wells, a woman with brown hair smiling at the camera. SLIDE 3: Objectives Learn why it’s important for disability community members to contribute to disability Learn about challenges associated with doing collaborative research Evaluate what constitutes a good research study worth Express personal needs and expectations that need to be met in order to contribute to disability research SLIDE 4: Participating in Research Subject About people with disabilities Audience For people with disabilities Reviewer Reviews product in an almost finished state to provide feedback Reader/Tester Gauges the quality of factors of the project or product Advisor Provides guidance and insight to stakeholders and disabled people outside of the project Researcher People with disabilities are employed as co-researchers SLIDE 5: Importance of Disability Community in Research Lived experience Produces research that is better tied to disability advocacy efforts Findings that actually matter SLIDE 6: Beyond the Project Skill Development: Interviewing Data Analysis Software Training Network Creation: Building networks between disability research and disabled people Connecting people with disabilities with other opportunities Work Experiences: Presentations and conferences Potential publication SLIDE 7: What are your Hesitations About Participating in Research? SLIDE 8: Should You Join a Research Study? Funding Expectations Alignment with values Timing of the ask Power dynamics Other disabled people? Researcher’s relationship to disability Don’t settle! SLIDE 9: Barriers and Facilitators in Access to HCBS for People of Color Barriers and Facilitators in Access to HCBS for People of Color (Kim The, Miriam Heyman) Qualitative interviews with disabled people of color living who have experienced placements in nursing homes and other institutions and have transitioned to the community Experiences with cultural and linguistic access to HCBS Alt text: Image showcasing group of disabled individuals of color smiling in a bright green background. SLIDE 10: Community Advisory Committee Christine Liao, American Association of People with Disabilities Dr. Janie Mejias, Women Enabled International Dr. LaWanda Cook, Cornell University Andy Arias, Self-Advocate and Policy SME Bernard Baker, Self Advocates Becoming Empowered Melody Cooper, Self Advocates Becoming Empowered Conchita Hernandez Legorreta, Mentoring Engaging and Teaching All Students Tyree Brown, Self-Advocate and Visual Artist Jean-Luc Pierite, Indigenous Activist and Designer Elaina Seep, Aniwahya Consulting Services Germán Parodi, The Partnership for Inclusive Disaster Strategies SLIDE 11: Approach to PAR Lived Experience (LE) Experts → Involved in all elements of the research from development of the interview guide to data analysis​ → LE experts for this study are disabled people of color of different sex, age, geographic location, and educational level. SLIDE 12: Research process Alt text: Image titled "Our project roadmap." Image has a road with checkpoints. At the bottom of the image are 3 disabled people of color with different disabilities. Image of research process. There are three major checkpoints along an image of a road- planning and training, data collection and analysis, and writing and dissemination. Under planning and training there are 2 parts- develop interview guide and interview training. Under data collection and analysis there are 2 parts- do interviews and analyze data. Under writing and dissemination, there are 2 parts- write up results and discussion and share results. SLIDE 13: Experiences of a Peer Researcher The opportunity to be a part of a study that connects directly to me. Learning new skills about research. Offering information that may not be known from researchers who have not experienced the research topic. SLIDE 14: Experiences of NCIL Staff Outreach and dissemination Opportunity for our network to engage in research and support core services Resource building SLIDE 15: Discussion Would you participate in research? Why or why not? What type of research are you interested in engaging with? What role would you like to have? What are some deal breakers that you have for deciding whether you want to engage in research? SLIDE 16: Recruiting Research Participants Alt text: Image of checklist with the title “Looking for Disabled People of Color Who Have Lived in Nursing Homes or Other Institutions to Share their Experiences?” -Are you a person with a disability who has lived in a nursing home or other institution? -Are you now living in the community and receiving Medicaid Home and Community-Based Services (or want to)? -Are you a person of color? -Are you 18 years of age or older? You may be eligible to participate in a research study Brandeis University is doing. SLIDE 17: Connect With Us! Email Us:  CLequity@brandeis.edu Follow Us: @CLpolicy Website:  CommunityLivingEquity.org  Questions? Reach out to Kim! Email: kimberlythe@brandeis.edu Phone Number: 781-736-3911