Engaging Adults with Intellectual and Developmental Disabilities as “Citizen Scientists” to Transform Health Care Accessibility

Adults with intellectual and developmental disabilities (AIDD) experience persistent barriers to accessing and participating in health care yet are rarely engaged as partners in efforts to improve accessibility. This study used the evidence-based Our Voice (OV) citizen science approach to engage AIDD in identifying barriers and facilitators to primary care access and generating actionable solutions. Twelve participants (six AIDD and six adults without IDD) documented accessibility conditions across three medical clinics using photographs and narratives. Analysis of 170 photographs and 154 narratives identified five themes: (1) sensory considerations, (2) informational materials, (3) signage and wayfinding, (4) accommodations, and (5) physical accessibility. Findings demonstrate the feasibility of engaging AIDD in structured, clinic-based accessibility assessment and suggest a participatory framework that may inform research and quality improvement initiatives aimed at promoting disability-inclusive health care.