Conducting Disability Research with People from Diversity Ethnic Groups: Challenges and Opportunities Fabricio E. Balcazar, Ph.D. Department of Disability and Human Development University of Illinois at Chicago Copyright © Department of Disability and Human Development University of Illinois at Chicago. Center for Capacity Building for Minorities with Disabilities Research. Project funded by the US Department of Education. National Institute on Disability and Rehabilitation Research, Award # H133A040007)

2 Presentation Overview 1.Researcher-identified challenges and opportunities 2.Recommendations for Research and Practice

3 What the literature indicates: Lack of access & poor outcomes 1. African American, Latino, and Native American individuals with disabilities often have poor access to disability and health-related services

4 2. Minority individuals with disabilities are less likely to achieve positive independent and rehabilitation outcomes when compared with whites Obstacles include: Lack of affordable services Providers who do not speak their language and/or understand the cultural differences Limited knowledge about community resources and services Cultural mistrust Limited family and community support

5 Need for Research The Rehabilitation Act of 1973 (P.L ) and amendments have led the Federal Government to increasingly promote and fund research and services involving minorities with disabilities. Researchers often claim that it is hard to recruit minorities with disabilities. There are few minority researchers. Yet there has been little to no research on the specific challenges experienced by researchers in recruiting and involving ethnic minorities with disabilities in research activities.

6 Our Study Participants and Procedure 79 NIDRR-funded researchers Two stages of recruitment NIDRR Section 21 Conference attendees (n=23) Mail & electronic mail survey sent to 115 center directors (n=56; 49% response rate)

Instrument Survey about experiences with recruitment, research and dissemination with minorities with disabilities 20 Likert-type items 2 open-ended questions 2 Yes/No questions 7

8 Respondents Director or Research Coordinator (66%) Professor (14%) Other professional (5%)

Research with Minorities 72% conduct research with minorities with disabilities African Americans (54%) Latinos (54%) Asian Americans (42%) Native Americans (40%) Pacific Islanders (29%) 9

10 60% of respondents conduct research with more than one ethnic minority group African American LatinoAsian American Native American Pacific Islander 23%Yes 10%Yes 8%Yes 4%Yes

Research Team Diversity At Least One Researcher Team MemberPercent African American34 Latino35 Asian American30 Native American11 Pacific Islander4 Caucasians Only45 11

Centers that provided ethnic data on staff and participants (n=41) 12 RacesPercentMatches Latinos80Staff & Participants African American 78Staff & Participants Asian59Staff & Participants Pacific Islanders 20Staff & Participants Native American 17Staff & Participants

Centers that reported working with all ethnic groups (n=18) RacesPercentageMatches All61Incomplete All39None 13

14 Most Significant Challenges* Recruitment: Challenges related to recruiting and motivating minorities with disabilities to participate in research Establishing contacts and building trust in ethnic minority communities Motivating participants to stay involved and successfully complete follow up contacts * Means greater than 3.0 to some extent and more than 10% of respondents indicated a very great challenge

15 Most Significant Challenges Qualitative Responses Research: Finding research protocols, surveys and questionnaires developed or adapted for minorities with disabilities. Ensuring that the focus and methods of the research were relevant to their research participants with disabilities who were ethnic minorities. Recruiting research team members who are ethnic minorities or ethnic minorities with disabilities.

Research: (continued) Findings someone who can translate materials into the preferred language (other than English) of research participants. The cost of translating materials into other languages, including Braille. Having insufficient funding to provide the support that participants need to be involved in research activities (e.g., transportation)

17 Most Significant Challenges Qualitative Responses Dissemination: Disseminating findings to minorities with disabilities in a language other than English. Using dissemination outlets that reach minorities with disabilities and those serving them. Translating research findings into practice

18 Least Significant Challenges* Recruitment Identifying social and community settings attended by minorities with disabilities Research Including the views of minorities with disabilities when conducting research and outreach Dissemination Disseminating materials about their project *<3% of respondents reported challenges

19 Satisfaction Participants reported being between neutral and satisfied with their: outreach to minorities with disabilities (X=3.19, SD=1.09), culturally competent research (X=3.47, SD=.84), efforts to disseminate information and research findings to minorities with disabilities (X=3.09, SD=.94) what they could offer to minorities with disabilities (X=3.28, SD=.99).

20 Significant Resources or Supports Qualitative Responses Relationships with key community contacts Leaders within minority communities including tribal governments and translators Relationships with organizations Independent living centers, community-based organizations, churches, schools and vocational rehabilitation offices Federal initiatives to increase and improve research with minorities with disabilities NIDRR, the National Institute of Health, the Rehabilitation Services Administration and the National Science Foundation

Resources or Supports (continued) Research partnerships within and across universities Students with disabilities from minority backgrounds Ethnic minority center [in-house] staff University offices related to minorities Historically Black Colleges and Universities; Hispanic Colleges Research partners from large urban areas

22 Researchers Need for Cultural Competence Training 40% of NIDRR researchers reported needing cultural competence training for their staff and themselves 13% believe that there is always an ongoing need for training 10% want training to be tailored to their program and address research 8% believe their staff lacks diversity or experience 6% reported that they already provide ongoing cultural competence training to their staff

23 Recommendations for outreach, research and dissemination Partnerships with universities located in large urban cities and/or minority institutions of higher education. Partnerships with CBOs serving minorities with disabilities. Integrate outreach with local community events.

24 Recommendations (continued) Recruit research team members who are ethnic minorities with disabilities from the target community. Train community leaders. Support participants needs that facilitate participation Use Participatory Research approaches

25 Recommendations (continued) The National Center for Dissemination of Disability Research is working to create a forum where researchers can discuss strategies that work, learn about best practices, and about successful ways to increase minority participation in researcher efforts

26 Recommendations (continued) Future research could examine types of initiatives and programs that agencies like ADD and NIDRR may introduce in order to increase collaboration, and promote successful involvement of ethnic minorities with disabilities in research activities among grantees.

27 How are we at the Center examining issues of recruitment, research and dissemination? Development of standards for culturally competent and linguistically appropriate research (Glen Fujiura). Racial identity and cultural mistrust as psychological cultural correlates of rehabilitation success (Reginald Alston). Intersection of disability and race in self-views of Latinos and African Americans (Carol Gill). Disability determination and provision of vocational rehabilitation services (Brigida Hernandez). Building CBOs capacity for evaluating outcomes (Yolanda Suarez-Balcazar & Tina Taylor-Ritzler) Training service providers, practitioners and researchers on cultural competence (Fabricio Balcazar & Celestine Willis)