Empowering Lives: How Deinstitutionalization and Community Living Improve the Quality of Life of Individuals with Intellectual and Developmental Disabilities

• Published in: Research in developmental disabilities 2025-01, Vol.157, p.104909, Article 104909
• Main Authors: Navas, Patricia, Arias, Víctor B., Vicente, Eva, Esteban, Laura, Guillén, Verónica M., Alvarado, Natalia, Heras, Inés, Rumoroso, Paula, García-Domínguez, Laura, Verdugo, Miguel Ángel
• Format: Article
• Language: English
• Subjects: community living; decision making; deinstitutionalization; intellectual disability; quality of life; self-determination
• ISSN: 0891-4222; 1873-3379; 1873-3379
• DOI: 10.1016/j.ridd.2024.104909

The number of people with intellectual and developmental disabilities (IDD) living in residential settings has not changed substantially in recent years in Spain. To change this situation the project “My House: A Life in the Community” aims to promote the transition of individuals with IDD and high support needs into community settings. This paper deepens the understanding of the underlying mechanisms responsible for the changes observed in the process of deinstitutionalization. A longitudinal study was designed to evaluate the quality of life of individuals with IDD (n = 90) across different environments at two distinct time points: when they were living in an institution and nine months after transitioning to a community-based setting. A comparison group (n = 72) consisting of individuals who remained institutionalized was included to carry out intergroup comparisons. T-tests were used to estimate mean differences both between and within groups. Longitudinal path models were used to investigate the processes underlying the relationships between variables. After transition, movers obtained significantly higher mean scores on all variables with large or very large effect sizes. However, simply moving to a different place was not the factor responsible for the observed improvements: positive changes in quality of life require the constant availability of opportunities to support decision making. deinstitutionalization will only lead to improvements in quality of life if it favors people’s control over their lives. Community living should therefore be understood not as an autonomous life but as a chosen one. •Quality of life improves after deinstitutionalization but not solely due to relocation.•Quality of life changes are mediated by daily supports and opportunities for decision making.•Individuals with high support needs benefit as much as their peers from deinstitutionalization.•Effective supports must enhance control over one’s life for real improvements in quality of life.