Strengthening Community Participation by People With Disabilities in Community-Based Group Homes Through Innovative Action Research

Abstract

In the US and beyond, a paradigm shift is underway toward community-based care, motivated by changes in policies, payment models and social norms. A significant aspect of this shift for disability activists and policy makers is ensuring participation in community life for individuals with disabilities living in residential homes. Despite a U.S. government ruling that encourages community participation and provides federal and state funding to realize it, little progress has been made. This study builds on and integrates the expanded model of value creation with relational coordination theory by investigating how the resources and relationships between care providers, adults with disabilities, family members, and community members can be leveraged to create value for residents through meaningful community participation. The purpose of our community case study was to assess and improve the quality of relationships between stakeholder groups, including direct care staff and managers, residents, family members, and the community through an action research intervention. This study took place in a residential group home in a Northeastern US community serving adults with disabilities from acquired brain injury. A pre-test post-test design was used and quantitative assessments of relational coordination were collected through electronic surveys, administered at baseline, and post-intervention. Direct care staff, supervisors, the house manager, and nursing staff completed the survey. Qualitative data were collected through focus groups, change team meetings, and key informant interviews. Direct care staff formed a change team to reflect on their baseline relational coordination data and identified the weak ties between direct care staff, family members, and the community as an area of concern. Staff chose to hold a community-wide open house to provide an opportunity to foster greater understanding among staff, residents, family, and community members. The change team and other staff members coordinated with local schools, business owners, town officials, churches, and neighbors. The event was attended by 50 people, about two-thirds from the community. Following the intervention, there was an increase in staff relational coordination with the community. While statistical significance could not be assessed, the change in staff RC with the community was considered qualitatively significant in that real connections were made with members of the community both directly and afterwards. Despite a small sample size, a residential setting where management was favorable to initiating staff-led interventions, and no comparison or control group, our small pilot study provides tentative evidence that engaging direct care staff in efforts to improve relational coordination with community members may succeed in building relationships that are essential to realizing the goal of greater participation in community life.

Keywords: Olmstead decision; action research; community participation; direct care staff; long term care; people with disabilities; relational coordination; residential facilities.