Development and Validation of Standardized Quality of Life Measures for Persons with IDD.

The implications of the individual quality of life (QoL) model of Schalock and Verdugo have made it the most cited QoL model in the field of disability. The QoL model is understood as a conceptual and applied framework for action that allows the materialization of the rights of persons with disabilities through the multidimensional assessment of these persons using QoL indicators, and the development of actions guided by these values and supported by evidence. The purpose of this work is to present the foundations of this model and offer a step-by-step guide to developing standardized QoL assessment instruments and providing evidence that supports their use to implement the model in practice. This paper explores relevant topics such as: (a) the need to identify critical population groups and contexts; (b) the identification of QoL indicators for said groups and contexts; (c) the development of items focused on the assessment of personal outcomes; (d) provision to the items of validity evidence based on content and pilot measure design and (e) validation process to gather evidence that supports the uses of the instrument. Last, a framework that allows using the evidence on personal outcomes as disaggregated and aggregated data at different levels of the social system is presented, thus highlighting the role of the model as a change agent regarding individuals, organizations and schools, and public policy.

Supports for people with intellectual and developmental disabilities during the COVID-19 pandemic from their own perspective.

BACKGROUND: Individuals with intellectual and developmental disabilities (IDD) represent a particularly vulnerable group to the threats posed by COVID-19. However, they have not yet been given a voice on how their living conditions have been affected by COVID-19. AIMS: This study aims to report the impact on people with IDD of COVID-19 and the response measures applied in Spain during the lockdown. METHOD: Data on 582 individuals with IDD were collected through a survey. Seven open questions were included to capture the perspectives of people with IDD on COVID-19 and its consequences. Content analysis was performed to identify themes and categories across participant responses. Chi-square tests were used to analyze the relationship between reporting a specific category and participants' characteristics. RESULTS: Supports have been conditioned by the living context. People living in specific settings had fewer natural supports, while those living with their family relied heavily on it. Participants also lacked supports considered necessary. It is worth stressing that persons with IDD have also provided support to others. CONCLUSIONS: Although people with IDD have generally received the assistance they need during the lockdown, it must be ensured that appropriate supports are provided regardless of the context in which they live.