Community Social Participation through the Lens of Individuals with Developmental Disabilities and Families

Title: Community Social Participation through the Lens of Individuals with Developmental Disabilities and Families Aims/Intent: Describe the meaning of community social participation through the experiences of individuals with developmental disabilities and families. Discuss the following “How can we conceptualize, measure and fully understand the experience of community social participation as a determinant of family quality of life, health and well-being? Rationale: Community social participation is a critical determinant of health, well-being and quality of life for all people, including those with disabilities. Notably, “What defines individuals with disabilities, their abilities, and their health outcomes more often depends on their community, including social and environmental circumstances. To be healthy, all individuals with or without disabilities must have opportunities to take part in meaningful daily activities that add to their growth, development, fulfillment, and community contribution”.1 However, barriers to accessing satisfying community social participation exist. Specifically, individuals with developmental disabilities and their families disproportionately face environmental and social barriers that impede participation in meaningful community-based social, recreational and leisure activities.2, 3 This is an occupational justice issue as families may not be able to access opportunities, disengage because they feel judged or unwelcome, or outings are “not worth the effort” because they are too difficult.3, 4 Our collective work with community organizations aims to shift characteristics of the physical and social environment so that people and places in the community are more supportive of occupational participation for individuals with diverse needs.5 Specifically, work in the cultural arts will serve as an example whereby we have asked families to (1) identify barriers and challenges to community participation, and (2) describe their family participation experiences in art-making and as patrons of cultural arts performances. We will ignite discussion with qualitative research that reveals family experiences “doing, being and belonging” in community cultural arts activities. Following, we will engage in dynamic discussion on the value and challenges of measuring community social participation as a determinant and outcome in relation to health, well-being, and quality of life. Occupational science principles will shape dialogue around participation as a complex and individually-perceived construct and an issue of occupational justice and health equity. Potential Outcomes for Participants: Gain insight into research that aims to understand family experiences following community cultural arts participation and discuss how these efforts factor into larger occupational justice and health equity initiatives. Key words: occupational justice, community social participation, health equity Discussion questions to facilitate occupational science concepts and ideas: Can we effectively and efficiently understand family experiences of community cultural arts as a means to harness efforts to advocate for and propel occupational justice in relation to access and equity in community social and leisure activities? How can we use findings to strengthen partnerships with community organizations to adopt new practices and government/other institutions to adjust policy? How do we effectively measure community social participation as a determinant and outcome that relates to health, well-being and quality of life