Instrumental Support: Accounts from Adults with Intellectual and Developmental Disabilities

• Published in: Journal of developmental and physical disabilities Vol. 37; no. 1; pp. 51 - 77
• Main Authors: Arnold, Catherine Keiling, Harris, Sarah Parker
• 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; Financial support; Healthy habits; Interviews; Original Article; Participatory research; Pediatrics; Psychology; Public Health; Qualitative research; Relatives; Supporters; Formal services; Instrumental support; Family support; Natural support
• ISSN: 1056-263X; 1573-3580
• DOI: 10.1007/s10882-024-09981-5

This qualitative study used an inclusive and participatory research approach to examine the perspectives of people with intellectual and developmental disabilities (IDD) on instrumental supports. Instrumental supports include concrete and direct ways people assist others in solving a problem or accomplishing a task, including helping to access and navigate formal supports and services. Natural supporters play essential roles in setting up and maintaining formal supports for individuals with IDD. Family members that provide instrumental support are responsible for integrating the formal and informal supports for the best mix of supports based on the person with IDD’s needs and preferences. This study examined the instrumental support people with IDD received from and gave to their families related to physical support, healthy living, financial support, and navigating formal services. Thirty virtual interviews were conducted using the dyadic interview method with 10 adults with IDD and 10 family members who they chose. Findings showed that people with IDD received natural supports from their family in numerous areas including physical help, support to be healthy, and financial support. Also, families helped with formal supports by navigating the system of services for people with IDD. In addition to receiving support from their families, people with IDD also provided some reciprocal support to their families, specifically in the areas of physical help and healthy living. Implications for practice and policy are shared along with directions for future research.