Evaluación de resultados personales relacionados con derechos en jóvenes con discapacidad intelectual y Tea

Abstract

Aun teniendo gran relevancia el concepto de calidad de vida en el ámbito de la discapacidad intelectual (DI), existe escasa investigación acerca de su aplicación en jóvenes con trastorno del espectro del autismo (TEA), especialmente acerca de la dimensión derechos, área que ha cobrado especial importancia en los últimos años con la ratificación de la Convención de los Derechos de las Personas con Discapacidad de Naciones Unidas. Este estudio se centra en la evaluación de derechos en jóvenes con TEA y DI, comparando sus resultados con dos grupos de jóvenes que presentan DI y otra condición comórbida: síndrome de Down y parálisis cerebral. Para ello, se utilizó la subescala derechos de la versión piloto de la Escala KidsLife en una muestra de 153 participantes con DI entre 4 y 21 años (TEA = 51; síndrome de Down = 51; parálisis cerebral = 51). En el grupo con TEA, el género, el tipo de escolarización, el nivel de DI y de necesidades de apoyo dieron lugar a diferencias significativas. Los tres grupos obtuvieron resultados positivos, aunque los jóvenes con síndrome de Down obtienen resultados significativamente superiores a los obtenidos por jóvenes con TEA.

The Quality of Life Supports Model as a Vehicle for Implementing Rights

“…These core values guide policies and practices regarding people with IDD and their roles in society [13]. The core values that QOLSM brings together are the recognition of the human and legal rights of people with IDD [16][17][18][19] enshrined in the CRPD, the capacity and potential of people with IDD to grow and develop [20,21], the emphasis on self-determination, social inclusion and equity [22][23][24], and the commitment to address people's support needs and foster opportunities to enhance individual functioning and personal well-being [25,26]. These values are fundamental to the QOLSM, and are essential for promoting the QOL of people with IDD.…”

Using the quality of life framework to operationalize and assess the CRPD articles and the Sustainable Development Goals

“…The #Rights4MeToo Scale ("#YoTambién Tengo Derechos"; G omez et al, 2023) is such an instrument. This validated and standardized instrument operationalizes the CRPD Articles and SDGs through the assessment of QOL-related personal outcomes (G omez et al, 2021a, 2021bMorales et al, 2021;Mor an et al, 2023;Verdugo et al, 2021) and contextual factorsnamely, the 41 QOL indicators listed in Table 1. The purpose of the instrument is to: (a) give a voice to people with IDD regarding their personal values, their lived experience, and everyday situations in their daily lives; (b) act as a tool that professionals and relatives can use to detect any breach, abuse, or denial of rights, thereby helping them enhance the supports and services they provide to this group; and (c) serve as a guide for organizations to identify the strengths and greatest needs of this population in relation to rights and, therefore, in QOL.…”

The Application of Quality of Life in Services for Persons with Intellectual and Developmental Disabilities: Lines of intervention in Spain and Italy

“…As explained by Gómez et al (2021b), the QOLSM consolidates core values related to social-ecological model of disability; the capacity and potential of individuals to grow and develop (Nussbaum, 2011;Wehmeyer, 2013); the new disability rights paradigm created by the Convention on the Rights of Persons with Disabilities (United Nations, 2006) that emphasize legal, economic, social, and cultural rights (Claes et al, 2016;Esteban et al, 2021;Gómez et al, 2020Gómez et al, , 2021bHarpur, 2012;Lombardi et al, 2019;Mittler, 2015;Morales et al, 2021;Verdugo et al, 2012); the emphasis on context, self-determination, inclusion and equity (Morán et al, 2019;Schalock et al, 2020;Shogren et al, 2021;Vicente et al, 2019;Wehmeyer, 2020); the use of best practices and valuebased outcomes-based evaluation (Gómez et al, 2012(Gómez et al, , 2022Gómez & Verdugo, 2016;Schalock et al, 2011); and the commitment to address a person's support needs and foster opportunities to enhance individual functioning and personal well-being (Buntinx et al, 2018;Schalock et al, 2021a;Thompson et al, 2015Thompson et al, , 2016.…”