The Limits and Contributions of Formal Support: Service Providers’ Perspectives on Balancing Formal and Natural Support for People with Disabilities and their Families in Canada

• Published in: Journal of developmental and physical disabilities Vol. 37; no. 1; pp. 129 - 156
• Main Authors: Nuri, Reshma Parvin, Piccone, Caitlin, Gaurav, Navjit, Thomson, Donna, Pauls, Rebecca, Perry, Linda, Aldersey, Heather Michelle
• Format: Journal Article
• Language: English
• Published: New York Springer US 01.02.2025; Springer Nature B.V
• Subjects: Behavioral Science and Psychology; Child and School Psychology; Developmental disabilities; Developmentally disabled people; Integrated delivery systems; Original; Original Article; Pediatrics; People with disabilities; Psychology; Public Health; Quality of life; Canada; Formal Support; Family Support; Developmental Disability; Natural Support
• ISSN: 1056-263X; 1573-3580
• DOI: 10.1007/s10882-023-09944-2

Evidence suggests that integrated support, combining both natural and formal supports, is often essential for individuals with developmental disabilities to achieve their preferred quality of life. However, studies are limited on how to organize supports so that people with developmental disabilities and their families find a balance between formal and natural supports. Often, there are systemic and personal boundaries around the nature and extent of support that can be offered to persons with developmental disabilities through formal mechanisms, yet the value of natural supports in the lives of persons with developmental disabilities is often undervalued in society. Therefore, the objectives of this study were to explore formal support providers’ perspectives on (a) the unique skillsets and attributes of natural support providers and formal support providers; and (b) how we might best enable both natural and formal supports for persons with developmental disabilities and their families. Following a qualitative approach, we interviewed 16 formal support providers working with adults with developmental disabilities and their families via Zoom. We analyzed data using thematic analysis. We organized results into three themes: the role of natural supports, the role of formal supports, and strategies to best configure a system of supports. Results imply that there is a need for investment of funding to incentivize both support structures for adults with developmental disabilities and their families. Future studies should explore the perspectives from people with developmental disabilities and their natural support providers.