"What's going to happen after I'm gone?": Parent Perspectives on Technology in Supporting Independent Living for Adults with Intellectual Disabilities

Abstract

Adults with intellectual and developmental disabilities (IDD) are increasingly transitioning from family homes towards semi-inde\-pendent living. As parents hand off the role of primary caregiver, they face numerous challenges in arranging consistent and quality support. Our research centers on understanding these caregiving routines. By focusing on the unique lived experience of parents, who possess extensive explicit and tacit knowledge of their adult child's requirements, we aim to map the management of care they provide. This foundational understanding is essential to identifying how assistive technologies can effectively serve a key role in supporting adults with IDD in this transition. In this work, we interviewed 16 parents of adults with IDD beginning this transition to understand: 1) how they currently provide support for daily living and what makes their support effective; 2) what their experiences and perceptions are regarding the use of technology; and 3) how they envision assistive technology successfully integrating with their adult child's new home or with other supports to promote independence. Our thematic analysis produced four themes: common modes of support, inside the routine to support growth, the fragility of continuity of care across transitions, and participants' perceptions and experiences of assistive technology. Building on these findings, we derive four design principles for growth-oriented assistive technology. These include pre-transition onboarding to capture caregiver tacit knowledge; structured scaffolding towards long-term growth; adaptive sensing that responds to day-to-day variability; and customization for the individual balanced with consistency for the care network.