Formal and Natural Supports: Perspectives From Adults With Intellectual and Developmental Disabilities, Family Members, and Support Workers

ABSTRACT People with intellectual and developmental disabilities and their families often utilize disability‐related supports to navigate their lives in the community. These supports can come from formal (paid) and natural (unpaid) sources. It is important to understand people's experiences navigating both types of supports within the support ecosystem. To that end, we conducted six focus groups (4‐7 participants each) comprising 9 persons with disabilities, 10 family members, and 15 formal support providers to understand the following: (a) What are the experiences of adults with intellectual and developmental disabilities and their family members in engaging with both natural and formal support systems in British Columbia and Ontario, Canada? (b) How might current disability‐related support systems in Canada be improved to better enable adults with intellectual and developmental disabilities and their families to live good lives? Findings indicated the importance of approaching supports from a human rights‐based (rather than a deficit‐based) approach and highlighted the critical importance of relationships and community connections. Findings affirmed that integration of both formal and natural supports is essential, with formal supports often facilitating and enabling natural support networks to flourish. Some participants reflected on how challenging it is to create and maintain natural support networks and believed that much of the work to do this still remains with parents, in spite of efforts to expand circles of support. Finally, findings highlighted systemic barriers and policy hurdles that individuals and families experienced when trying to secure the support they needed and wanted, particularly when transitioning from child to adult formal support systems. We argue that flexibility of government funding, enhancement of community connections, and focus on transition between service systems will be essential in enabling individuals with intellectual and developmental disabilities and their families to live their best lives.