Experiences of self-determination in old age among people with intellectual disabilities institutionalised in Chile: The right to decide does not age

Izaskun Álvarez-Aguado, Vanessa Vega, Miguel Roselló-Peñaloza, Félix González-Carrasco, Felipe Muñoz La Rivera, Herbert Spencer, Maryam Farhang

Research output: Contribution to journalArticlepeer-review

Abstract

Background: The aging of people with intellectual disabilities constitutes a growing demographic phenomenon, yet it remains underexplored from a rights-based perspective. Understanding how self-determination is experienced in residential settings is fundamental for promoting dignified aging. Method: This qualitative study involved semi-structured interviews with 86 older adults with intellectual disabilities living in nine long-term care facilities in Chile. Results: Five central themes were identified: margins for daily decision-making, validation of personal voice, structural barriers to autonomy, enabling supports, and the relationship between self-determination and emotional wellbeing. Findings showed that self-determination was heavily influenced by institutional cultures, communication accessibility, and relational environments rather than by individual characteristics alone. Conclusions: Promoting self-determination in long-term care requires institutional reforms focused on cognitive accessibility, flexible routines, and formal participatory spaces. Ensuring the right to decide is essential for improving emotional wellbeing and guaranteeing dignified aging for people with intellectual disabilities.

Original languageEnglish
JournalJournal of Intellectual and Developmental Disability
DOIs
StateAccepted/In press - 2025

Keywords

  • Ageing
  • intellectual disabilities
  • residential settings
  • self-determination

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