Participatory Action Research with People with Disabilities Self-Directing Home and Community-Based Services

Background and Purpose: Forty-three states currently offer participant-directed budget options as part of home and community-based services (HCBS) for people with disabilities. Research like that conducted in the Cash and Counseling Demonstration and Evaluation has shown statistically significant short-term benefits of a participant-directed budget and employment authority HCBS model.  Due to its participatory, empowering, and emancipatory nature, Participatory Action Research (PAR) is well suited for evaluating participant-directed HCBS program models like Cash and Counseling. For people with disabilities, PAR research provides a vital tool for self-determination and empowerment. In the context of participant-directed HCBS, numerous prospects exist for melding PAR with evidence-based social work practice and research. However, few studies have combined PAR with research on participant direction to date.

Workshop Content: In this workshop, we present an opportunity for learning about conducting qualitative PAR with people with disabilities self-directing their own care. Presenters are a PAR team composed of social workers, nurses, people and self-directing participants with disabilities, and past and present participant representatives, including members of the National Participant Network. The National Participant Network is a national advocacy group for people enrolled in or interested in participant-directed HCBS.

Pedagogical Methods: Our primary pedagogical techniques include PowerPoint presentation with video clips, brief group activity, question and answer period, and interactive discussion. Specifically, we first describe what PAR entails, including providing examples of PAR studies conducted with people with disabilities. Next, a group consensus building activity focuses on problem definition in PAR. We then present our experiences employing a PAR framework within two joint qualitative studies on the long-term outcomes and experiences of participants enrolled in one Cash and Counseling model program as a case study example. Three National Participant Network members took part in each research phase along with social work doctoral student and faculty researchers. We take workshop attendees through our PAR process, from problem definition, team development and training, Institutional Review Board and state approvals, recruitment, peer interviewing, and data analysis, through dissemination. We also make recommendations for other people with disabilities, social workers, nurses, students, and researchers interested in conducting this type of research. We then take questions on our PAR experience and qualitative PAR in general. We conclude with an interactive discussion about any attendee concerns with PAR where we brainstorm tools and suggestions on how to deal with those concerns. 

Implications: By hearing first-hand experiences with qualitative PAR from people with disabilities self-directing their own care, workshop attendees extend not only their knowledge on PAR, but also take part in a barrier breaking experience. Workshop attendees leave with an understanding of: 1) the benefits of conducting qualitative PAR research with people with disabilities; 2) methods for effectively completing qualitative PAR projects; and 3) techniques to address potential issues involved in PAR.