Sustaining Community Health Initiatives for People Aging with Intellectual/Developmental Disabilities

People with intellectual/developmental disabilities (I/DD) are more likely to experience the aging process earlier and at a more rapid rate than individuals without I/DD. Therefore, it is imperative that I/DD agencies are able to support people aging with I/DD so that they may continue to age in their homes and be active members of their community. Community-based health and participation initiatives (CBHPI) play an important role in maintaining the health, functioning, and participation of people with I/DD living in the community. However, implementation and long-term sustainability of CBHPI is often challenging, specifically among I/DD agencies. For this reason, the current dissertation explored the facilitators and barriers associated with CBHPI designed for people aging with I/DD who are living in group homes managed by I/DD agencies. The study utilized participatory action methods and methodologies (i.e., interviews, photovoice, and observations) to meaningfully engage 70 participants—35 individuals with I/DD and 35 management/direct support staff. These multi-methods served to provide a multi-level system analysis of the factors related to the sustainability of CBHPI. From these data, six main themes emerged: agency values and policies; resources and staff competencies; communication between management and staff; community/university partnerships; peer relations; and aging with I/DD. Overall, results not only identified a number of factors that can help or hinder CBHPI, but these findings also support the notion and practice of active inclusion of people with I/DD in the design, development, and dissemination of health and participation research-related initiatives. This approach would result in the generation of evidence that more accurately represents the needs and wants of people aging with I/DD in the community and would, in turn, increase the effectiveness and sustainability of such initiatives.