People with intellectual disability (ID) and extensive support needs experience poorer quality of life than their peers whose disability is not as severe. Many of them live in residential settings that limit community participation and prevent them from exercising control over their lives. This work analyzes the extent to which professional practices are aimed at promoting the right to community living for people with ID and extensive support needs, as well as the rights that are particularly linked to it, such as the right to habilitation and rehabilitation and the right to privacy. A specific questionnaire was designed and administered to 729 adults with intellectual disability (M = 37.05; DT = 12.79) living in different settings (family home, residential facilities and group homes). Measurement and structural models were estimated using exploratory structural equation modeling. Results obtained reveal that people with extensive support needs receive less support in terms of guaranteeing their right to independent living and privacy, especially when they live in disability-related services. This study highlights the need to implement and monitor, using valid and reliable indicators, mesosystem strategies that guarantee the right to live and participate in the community, especially for individuals with ID and extensive support needs.

Antecedentes:: Las personas con discapacidades intelectuales y del desarrollo (DID) con grandes necesidades de apoyo tienen más probabilidades de vivir en entornos segregados y altamente institucionalizados. Este estudio pretende analizar los cambios en el funcionamiento y calidad de vida de este colectivo tras la transición a viviendas ubicadas en la comunidad. Método: : La muestra incluyó 54 adultos con DID con grandes necesidades de apoyo que fueron evaluados en tres momentos temporales: antes de la transición, seis meses y un año después de la misma. Se aplicaron los instrumentos Resident Choice Scale, la Escala de Calidad de Vida San Martín, Active Support Participation Measure y la sección de Problemas de Conducta del Inventory for Client and Agency Planning. Los datos fueron analizados a partir de modelos de ecuaciones estructurales de mínimos cuadrados parciales (PLS-SEM) y pruebas t para medidas repetidas. Resultados: : Se observaron mejoras significativas en toma de decisiones, participación e independencia en actividades cotidianas y en calidad de vida, así como una reducción de los problemas de conducta. Conclusiones: : Los beneficios encontrados apoyan la necesidad de llevar a cabo procesos de transformación hacia servicios y prácticas profesionales más inclusivas que fomenten los derechos y la pertenencia comunitaria.

Introducción. El enfoque en derechos y el fomento de oportunidades son clave para lograr la participación de las personas con discapacidad intelectual y/o del desarrollo (DID). No obstante, incluso dentro de las organizaciones que prestan apoyos, las personas con DID continúan teniendo vidas dirigidas y restrictivas. Por consiguiente, se desarrolló una investigación inclusiva para favorecer la participación de las personas con DID en sus diferentes etapas, donde se exploraron los servicios de apoyo que reciben. Metodología. 49 personas con DID tomaron diferentes roles en tres fases del estudio: algunas como asesoras en la elección del tema de investigación, en la creación de un instrumento y en la discusión de los resultados, y otras como informantes. Resultados. Este estudio fue un espacio de debate y creación para las personas con DID participantes. A través de las diferentes fases del estudio se identificaron varias demandas y propuestas de mejora. Discusión. Con la investigación inclusiva se fomentó la participación de las personas con DID en temas que les competen, aspecto relevante para conocer sus verdaderas necesidades en el momento de llevar a cabo mejoras en las organizaciones. Asimismo, podría orientar a los investigadores a producir conocimientos más significativos y cercanos a la realidad.

Background: The Convention on the Rights of Persons with Disabilities emphasizes individual rights and autonomy. However, certain restrictive practices in support services for people with intellectual and developmental disabilities (IDD) may limit these rights and undermine autonomy. Structural practices are a type of restrictive practice usually defined as blanket rules or prohibitions that affect all users equally. They are considered restrictive because constrain the freedom of individuals with disabilities. Since these practices are so deeply ingrained in the organizational culture, they often become normalized and invisible. Despite the implications of structural practices for the rights of people with IDD, empirical evidence on their prevalence is limited, particularly in Spain. In this context, this article aims to analyze the presence of structural practices in different support services for people with IDD in Spain. Methods: A cross-sectional study was conducted with 45 disability support organizations, which participated by assessing the occurrence of restrictive practices, including structural practices, in their daily contexts using the LibRe scale. Among the structural practices, aspects related to the organization of time and activities, information management and decision-making, money management and established organizational norms were evaluated. The organizations conducted the assessments in teams, involving 194 professionals, 6 family members and 25 individuals with disabilities in the process. The assessment was part of an organizational transformation process. Frequency analyses and ANOVA tests were conducted to identify the most common restrictive practices. Results: Although organizations generally report a low frequency of restrictive practices, structural practices are significantly more common than others, such as physical or mechanical restraints. Within the structural practices, those referring to limitations in the organization of time and activities of daily living of people with disabilities stood out as frequent practices. Among the most frequent practices were limitations on recreational activities and inflexible meal schedules. Discussion: Implications of the restrictive practices most frequently reported by organizations on users’ quality of life are discussed, as well as the need to reduce structural practices through organizational transformation approaches. Future lines of research are also highlighted.