Experiencias de personas adultas con discapacidad intelectual sobre el derecho a la vida independiente: Un estudio de caso / Experiences of adults with intellectual disabilities on the right to independent living: A case study

Resumen En el ámbito de la discapacidad intelectual, el desarrollo de una vida independiente se ha configurado como un derecho humano y civil que permite a estas personas articular planes de vida deseados. Esta investigación analiza, mediante un estudio de caso, los significados que un grupo asesor compuesto por ocho personas adultas con discapacidad intelectual tiene sobre el concepto de vida independiente en el contexto chileno. Para la recopilación de los datos se diseñó una entrevista grupal semiestructurada acompañada de moodboards que facilitaron la verbalización de las respuestas. Sobre los relatos obtenidos a partir de las entrevistas se realizó un análisis de contenido temático. Los resultados muestran cómo el desempeño de una actividad laboral remunerada o el establecimiento de relaciones afectivas sólidas se conforman como elementos imprescindibles para la independencia personal. La dificultad para ser económicamente independientes o la falta de accesibilidad en el entorno laboral se identifican también como principales barreras para la concreción de este derecho. Igualmente, se destaca el rol que desempeñan la pareja y las amistades como figuras de apoyo constante a la independencia y al empoderamiento personal. Estos resultados sugieren algunas orientaciones para la planificación de intervenciones sobre este constructo, las cuales deben procurar la adquisición de habilidades que fortalezcan la capacidad de autocuidado de este colectivo, promover el incremento de oportunidades para la realización de elecciones significativas en el ámbito laboral, personal y comunitario, y adaptarse a los espacios en los que se desenvuelven las personas con discapacidad intelectual en la edad adulta.

Abstract In the field of intellectual disability, the development of an independent life has been configured as a human and civil right that allows these people to articulate desired life plans. Despite the advances, at the international level, research on aspects related to independent living in people with intellectual disabilities continues to be very scarce. Generally, the approaches to the study of this construct are based on broader investigations dedicated to evaluating the levels of quality of life or self-determination of this population in residential services or sheltered housing. Precisely, this study analyzes, through a case study, the meanings that an advisory group made up of eight adults with intellectual disabilities has on the concept of independent living in the Chilean context in order, on the one hand, to identify relevant elements for the definition of the construct from the perceptions and experiences of this population; and on the other, to propose guidelines at various levels that allow progress in the realization of this right. To collect the data, a semi-structured group interview was designed whose questions were grouped around four themes: previous conceptions of the participants about the construct of independent life, satisfaction with life and possibilities of the context for the development of personal independence, role of family, friendship and partner in independent life, and opportunities of the work context for the achievement of personal independence. During the interview, another strategy was incorporated in which visual language gained more relevance. Specifically, a set of ten moodboards were used that allowed participants to delve into the different topics addressed. The results of the code validation process were calculated using Krippendorff's alpha statistics (.954) and Cohen's kappa (.953), which showed a high level of inter-judge agreement. As a result of this process, categories (N = 6) and subcategories (N = 17) were established. The results show how various needs, barriers and facilitators for the development of independent life are identified from the interviews of the interviewees. Among the main needs is the performance of a paid work activity or the establishment of solid affective relationships. With regard to the barriers that hinder personal independence, the most notorious are related to the difficulty of being financially independent or to the lack of accessibility in the work environment. Regarding the elements that facilitate the development of an independent life, the role of the couple stands out as a constant figure of support for independence and personal empowerment. These results suggest some guidelines for planning interventions on this construct. Among others, they should seek the acquisition of skills that strengthen the self-care capacity of this group; should promote increased opportunities for making meaningful choices in the workplace, personal and community; and they must adapt to the spaces in which people with intellectual disabilities operate in adulthood. On the other hand, it is assumed that one of the main limitations of this research is that the results are not generalizable. However, this study has some strengths. Among others, it contributes to enriching the bulk of research on independent living, this being an aspect barely addressed in the literature. It also complements the results of other research regarding the elements that can condition the development of skills for personal independence. This allows for the design of interventions that provide opportunities for independent living based on the felt needs of these people. In addition, it raises future lines of research related, for example, to the importance of the informed choice of the residential environment or to the study of the possibilities of the digital world as an incident phenomenon in the acquisition of skills for personal independence.

Autodeterminación en personas con discapacidad intelectual que envejecen y algunas variables que inciden en su desarrollo / Self-determination in people with intellectual disabilities who age and some variables that affect their development

Resumen La autodeterminación es un constructo clave para garantizar el desarrollo de habilidades que permitan a las personas con discapacidad intelectual adquirir el control sobre sus vidas. Este estudio busca conocer los niveles de autodeterminación de 516 adultos con discapacidad intelectual en proceso de envejecimiento y algunas variables que inciden en su desarrollo. Desde un enfoque cuantitativo, los datos se han recopilado con una escala ad hoc elaborada desde el modelo funcional de autodeterminación. Las evidencias se han analizado mediante estadísticos descriptivos e inferenciales. Los niveles de autodeterminación de la mayoría de los participantes se sitúan en un rango bajo. Los principales resultados muestran cómo el desarrollo de competencias relacionadas con la autodefensa o el autoconocimiento está muy descendido a diferencia de otras habilidades como la realización de elecciones o la resolución de problemas. Además, la severidad de la discapacidad, la edad, el lugar de residencia o el tipo de apoyo se identifican como factores incidentes en el logro de la autodeterminación. La discusión revela, entre otras, la necesidad de priorizar el aprendizaje de competencias relacionadas con la autorrealización como fundamento de las propuestas de intervención en autodeterminación. Este estudio contribuye a enriquecer el grueso de investigaciones sobre autodeterminación en la adultez tardía, siendo este un aspecto apenas abordado en la literatura. Además, complementa los resultados de otras investigaciones con respecto a los factores que pueden condicionar el desarrollo de estas habilidades. Esto permite ir diseñando intervenciones que propicien oportunidades para trabajar la autodeterminación desde las necesidades sentidas de estas personas.

Abstract Self-determination is a key construct to guarantee the development of skills that enable people with disabilities to acquire control over their lives. This concept is understood as a set of volitional actions or abilities that help the person to act as the primary causal agent in their own life without unnecessary external influences. Progressively, this construct has been shaped as a personal disposition to exercise control over one's own behavior, becoming a priority educational goal and an indicator of quality of life in the field of intellectual disability. However, people with intellectual disabilities have premature aging processes generally accompanied by mental health disorders or emotional problems that hinder the performance of self-determination skills. Specifically, they have difficulties in developing actions aimed at promoting positive attributions of effectiveness or aimed at establishing personal goals. This complicates the acquisition of skills for self-regulation and the increase of personal empowerment skills. This study seeks to know the self-determination levels of 516 aging adults with intellectual disabilities aged between 45 and 86 years (. = 68.32; S = 4.95). Most of them live in the Metropolitan Region (Chile), have severe intellectual disabilities, are men and live with the family. From a quantitative approach and under an inclusive research model, the data have been collected using an ad hoc scale as a result of the revision of the ARC-INICO Self-determination Assessment Scale (Verdugo et al., 2015) and the Self-determination Scale ARC staff (Wehmeyer, 1995). The results have been analyzed using descriptive and inferential statistics that have preceded the use of parametric statistics. The self-determination levels of the majority of the participants (39.1 %) are in a low range. In addition, the development of competencies related to self-defense or self-knowledge are greatly diminished, unlike other skills such as making choices or solving problems. Likewise, the analysis shows how those participants who reside in the family home present higher averages in their self-determination than those who live outside the family home. Similarly, participants with mental health disorders have lower averages in their self-determination than those who do not present these pathologies. Regarding the degree of disability, the levels of self-determination of the mild group are higher than those of the group of adults with severe intellectual disability. Those who most often have family support have higher levels of self-determination than those who receive only professional support. With regard to age, the youngest participants have higher averages than the rest in terms of their self-determination. The discussion highlights, among others, the need to prioritize the learning of skills related to self-realization as the basis of the proposals for intervention in self-determination at this stage of life. The results suggest some implications to consider for the planning of interventions, for example, they should seek the development of skills that strengthen the self-defense capacity of people with intellectual disabilities, promote the increase of opportunities for the realization of meaningful choices, adapt to the scenarios in which aging people with intellectual disabilities usually operate, and involve families and professionals to achieve skills related to self-determination in old age. Despite the fact that one of the main limitations of this research is that the results are not generalizable, this study contributes to enriching the bulk of research on self-determination in late adulthood, this being an aspect barely addressed in the literature. In addition, it suggests the development of future lines of research related to the impact of technological supports on the quality of life of people with intellectual disabilities who age or with the study of cognitive impairment or the presence of mental health disorders in the levels of self-determination of these people.

Calidad de vida de adultos con discapacidad intelectual institucionalizados en Chile desde la perspectiva de los proveedores de servicios / Quality of Life of Adults with Intellectual Disabilities Institutionalized in Chile from the Perspective of Service Providers

El presente estudio de corte cualitativo, pretende analizar la percepción de profesionales, cuidadores de trato directo y directores sobre la calidad de vida de los usuarios de centros residenciales de Chile. La recogida de información se ha realizado mediante grupos focales. Los resultados obtenidos indican diferencias en las percepciones sobre la calidad de vida de las personas con discapacidad intelectual o del desarrollo según la tipología de informante. Por otro lado, los comentarios sobre la calidad de vida de los residentes reflejan una actitud excesivamente protectora que reduce las posibilidades de que estas personas sean los actores principales de sus vidas. Esta aproximación cualitativa ha permitido también identificar dimensiones del modelo de calidad de vida que se ven obstaculizadas por la institucionalización, como son los aspectos emocionales y materiales. Este estudio acentúa la importancia de los modelos mentales sustentados por los profesionales y su reflejo en las prácticas promotoras de la calidad de vida.

This qualitative study aims to analyze the perception of professionals, directcare assistants, and managers on quality of life of residential users in Chile. Information was gathered by means of focus groups. The results indicate differences in perceptions of quality of life of people with intellectual or developmental disabilities by type of informant. Comments on the quality of life of the residents reflect overly protective attitudes that reduce the chances of being the main actors of their lives. This qualitative approach also allowed the identification of dimensions of the quality of life model which are hampered by institutionalization, such as emotional and material well-being. This study emphasizes the importance of mental models supported by professionals and its reflection on the practices that promote quality of life.

Evaluación de la calidad de vida de adultos con discapacidad intelectual institucionalizados en Chile / Quality of Life Assessment of Institutionalized Adults with Intellectual Disabilities in Chile

El presente estudio analiza la calidad de vida de una muestra de 285 adultos institucionalizados con discapacidad intelectual. La calidad de vida, evaluada a través de profesionales, se concibe desde el modelo de ocho dimensiones de Schalock y Verdugo. Se ofrecen además evidencias de la adecuación (fiabilidad y validez) de la Escala Transcultural de Indicadores de Calidad de Vida para su aplicación con esta población. Los resultados revelaron diferencias significativas en importancia y uso de las diferentes dimensiones de calidad de vida, así como sobre sus valoraciones en función del grado de discapacidad de los participantes. La duración de la institucionalización tuvo un impacto significativo en las valoraciones de la importancia de las distintas dimensiones de calidad de vida. Se incluye una discusión sobre las percepciones de los proveedores de servicios acerca de la calidad de vida de sus usuarios y del impacto de la institucionalización.

This study analyzes the quality of life for a sample of 285 institutionalized adults with intellectual disabilities. Quality of life, as assessed by professionals, is conceptualized according to the eight domains model from Schalock and Verdugo. The study also offers evidence of the adequacy (reliability and validity) of the Cross-cultural Measure of Quality of Life Indicators for use with this population. The results revealed significant differences in importance and use of the different dimensions of quality of life, and evaluation ratings of quality of life, based on the degree of disability of the participants. Length of institutionalization significantly impacted on ratings of importance of the different domains of quality of life. Discussion on further research on perceptions of service providers concerning the quality of life of its users and the impact of institutionalization is included.

Necesidades de apoyos en adultos con discapacidad intelectual institucionalizados: estudio en el contexto chileno / Supports Needs for Institutionalized Adults with Intellectual Disability

El presente estudio analiza las necesidades de apoyos de una muestra de 285 adultos con discapacidad intelectual institucionalizados. El instrumento empleado ha sido la Escala de Intensidad de Apoyos, SIS (Verdugo, Arias & Ibañez, 2007). Los resultados revelaron la existencia de bajas necesidades de apoyos en cuanto al perfil general de la muestra, si las mayores necesidades están en las dimensiones de Aprendizaje a lo largo de la vida y la dimensión con menores necesidades de apoyos es Actividades de la vida en el hogar. Los años institucionalizados o la edad no se encontraron asociados con el nivel de las necesidades de apoyos, pero sí la severidad de la discapacidad y el género. Estos resultados avalan la validez transcultural de la SIS y su utilidad para planificar servicios orientados a mejorar la vida de la población institucionalizada con discapacidad intelectual.

This study examines the support needs of a sample of 285 institutionalized adults with intellectual disabilities. The instrument used was the Supports Intensity Scale SIS. The results revealed the existence of low support needs, with more elevated needs in lifelong learning activities and less in home living domains. Years institutionalized and age were not associated with the level of support needs, but the severity of the disability and the gender were. These results support the cross-cultural validity of the SIS and its usefulness for planning services oriented to improving the lives of institutionalized population with intellectual disabilities.