The right to participate in research: Ageing with intellectual disability

Background: The UNCRPD affirms the right of persons with disabilities to full participation in all areas of life, including in research. However, this right remains partially realised in practice, particularly for persons with intellectual disabilities often underrepresented. The project Ageing With Intellectual Disability: a co designed and tested model for long term services to support ageing in place (AIP) addresses this issue by actively involving this population at every research stage to develop a prototype of the new AIP model. Method: Based on an ethnographic case study employing a co design phase, the research involves persons ageing with intellectual disabilities through ethnographic interviews and co design activities. Findings: Four main results emerged: 1) the recognition/valorisation of individual preferences/agency, allowing persons ageing with intellectual disabilities to express priorities often overlooked in conventional service planning; 2) the need to adapt support services to the realities of everyday life, emphasising routines/familiarity/continuity as core dimensions of AIP; 3) a shift from service-driven provision to person/community-driven solutions, consistent with UNCRPD art. 19; 4) the enhancement of the relevance/feasibility/responsiveness of the emerging AIP model.