From a concept to a theory: The six eras of quality of life research and application.

This article describes the evolution of the quality of life concept through the lens of six distinct eras. Each era reflects a shared process in which multiple stakeholders, including persons with intellectual and developmental disabilities and researchers, have played a significant role. Across these six eras, research on quality of life has evolved from operationalizing a concept to developing a theory.

A Pioneer Tool to Reduce Restrictive Practices toward People with Intellectual and Developmental Disabilities.

Reducing restrictive practices toward individuals with intellectual and developmental disabilities is a globally recognized imperative and human rights priority. This paper presents a novel tool called LibRe for assessing and reducing restrictive practices. This tool involved an instrumental multistage design and collaboration between professionals, individuals with disabilities, family members, and experts from different fields.

How to Assess Oral Narrative Skills of Children and Adolescents with Intellectual Disabilities: A Systematic Review.

Children and adolescents with intellectual disabilities (ID) often encounter difficulties with narrative skills. Yet, there is a lack of research focusing on how to assess these skills in this population. This study offers an overview of the tools used for assessing oral narrative skills in children and adolescents with ID, addressing key questions about common assessment tools, their characteristics, and reported evidence.

Improving Quality of Life and Reducing Behavioral Problems of People With Intellectual and Developmental Disabilities Through Deinstitutionalization.

Antecedents: People with intellectual and developmental disability (IDD) with extensive support needs are more likely to live in segregated and highly institutionalized environments. The aim of this study was to analyze changes in functioning and quality of life for people with IDD and extensive support needs after transitioning to ordinary homes in the community.

Method: The sample included 54 adults with IDD and extensive support needs, who were assessed at three time points: before transition, six months later, and one year after transition.

A Systematic Approach to Implementing, Evaluating, and Sustaining the Shared Citizenship Paradigm in the Disability Field.

The disability field continues to face challenges in transforming and implementing meaningful and effective changes in person-centered services and supports aligned with the principles of the Convention on the Rights of Persons with Disabilities. To guide this transformative process effectively, a paradigm must be operationalized through a systematic approach. This article outlines such a systematic approach, consisting of two components: (a) aligning the paradigm's foundational pillars to the elements of an explanatory/implementation model (the Quality of Life and Supports Model) to facilitate the paradigm's operationalization, acceptance, and application and (b) aligning implementation, evaluation, and sustainability strategies with ecological systems, implementation targets, and the paradigm's foundational pillars to drive change across systems.

Support Needs of Children with Autism Spectrum Disorders: Implications for Their Assessment.

The construct of support needs has become a key aspect for the diagnostics, classification, and interventional management of autism spectrum disorders (ASDs). However, instruments specifically designed to assess support needs in this population are not available. Currently, the Supports Intensity Scale for Children (SIS-C), which could be administered to assess students with any type of intellectual disability (ID), is the only valid tool able to assess support needs in Spain.

Organizational change and evidence-based practices in support services for people with intellectual and developmental disabilities.

The impact on support services for persons with intellectual and developmental disabilities of the socioeconomic movements and theoretical reformulations of the last decades has generated the necessity, in order to guarantee their sustainability, to carry out processes of profound change in their organizational culture, intervening in the elements that compose it. Among them are professional practices as the best way to intervene in culture, with the use of comparative analysis between an organization's current practices and those expected with culture change. In this line, the organizational self-assessment tool "Organizational Effectiveness and Efficiency Scale" (OEES) is applied in a study with 24 organizations, which uses a collaborative assessment approach in the service of a set of evidence-based practices identified as standards in key aspects that guide culture change, specifically, a person-centered approach, participative structures, use of information systems and data management, implementation of quality systems and participative and transformational leadership.

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.

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

The Quality of Life Supports Model (QOLSM) is emerging as a new framework that is applicable to people with disabilities in general, but specially to people with intellectual and developmental disabilities (IDD). The aim of this conceptual paper is twofold. Firstly, it aims to show the overlap between the QOLSM and the Convention on the Rights of People with Disabilities (CRPD), highlighting how the former can be used to address many of the goals and rights embedded in the latter.

A community living experience: Views of people with intellectual disability with extensive support needs, families, and professionals.

Background: Despite the benefits of community living for people with intellectual disabilities (ID) and extensive support needs, they remain highly institutionalized.

Aims: To qualitatively analyze the perceptions of people with ID, including those with extensive support needs, professionals, and family members six months after the implementation of 11 community homes for 47 people in different regions of Spain METHODS: Thematic analysis of 77 individual interviews conducted with 13 people with ID, 30 professionals and 34 family members was performed using Nvivo12.

Results: Seven themes were found: (1) "the room as I like it", (2) "sometimes I don't obey", (3) "here I do a bit of everything", (4) "lots of people love me here", (5) "all thanks to them, who have helped me" (6) "I miss my mom", and (7) "I'm happy here".

Quality of Life and the International Convention on the Rights of Persons With Disabilities: Consensus Indicators for Assessment.

Background: The quality of life construct provides an ideal conceptual framework for translating such abstract concepts as self-determination, equity, accessibility, and inclusion. Through consultation with expert raters, we sought to develop and validate a bank of indicators and items, based on the quality of life conceptual framework, to be used as a means of evaluating and implementing the Articles of the Convention on the Rights of Persons with Disabilities (CRPD).

Method: Thirty-two experts in the field of intellectual and developmental disabilities participated, rating the suitability, importance, and clarity of a bank of 296 items, as well as the relevance of controlling for 70 sociodemographic variables.

Psychotropic drugs intake in people aging with intellectual disability: Prevalence and predictors.

Background: Psychotropic medication is frequently administered to people with intellectual disability with mental health and/or behavioural problems, instead of other non-pharmacological interventions. This study describes the mental health and behavioural problems of people aging with intellectual disability, their psychotropic medication intake, and the factors contributing to a greater medication intake.

Method: The sample consisted of 991 people with intellectual disability over 45 years.

Predictors of individual quality of life in young people with Down syndrome.

Purpose/objective: Although the concept of quality of life (QoL) has become a reference framework for the provision of support and services to people with intellectual disability (ID), its conceptualization and application for persons with Down syndrome (DS) have received little attention. This study analyzed QoL outcomes in children and young people with DS and examined the influence of several individual and environmental variables on QoL.

Research Method/design: A cross-sectional study was conducted.

Impact of COVID-19 on the burden of care of families of people with intellectual and developmental disabilities.

Aim: This study analysed the impact that COVID-19 and the response measures implemented by the Spanish Government have had on families of individuals with intellectual and developmental disabilities.

Method: Data on 323 family members (M = 52.3 years old; SD = 10.

Empirically supported psychological treatments: The challenges of comorbid psychiatric and behavioral disorders in people with intellectual disability.

This paper reviews the current state of knowledge on psychological interventions with empirical evidence of efficacy in treating common psychiatric and behavioral disorders in people with intellectual disability (ID) at all stages of their life. We begin with a brief presentation of what is meant by psychiatric and behavioral disorders in this population, along with an explanation of some of the factors that contribute to the increased psychosocial vulnerability of this group to present with these problems. We then conduct a review of empirically supported psychological therapies used to treat psychiatric and behavioral disorders in people with ID.

Operationalisation of quality of life for students with intellectual and developmental disabilities to improve their inclusion.

Background: Quality of life (QoL) is regarded as a framework to enhance inclusive education outcomes in different domains for all students, especially for those with intellectual and developmental disabilities (IDD). Assessment tools are needed to implement this framework. Although there is a long trajectory of QoL assessment in people with IDD, we identify a lack of instruments for students with IDD who attend to general education contexts.

A quality of life supports model: Six research-focused steps to evaluate the model and enhance research practices in the field of IDD.

In the field of intellectual and developmental disabilities (IDD) the constructs of quality of life and supports have been combined into a Quality of Life Supports Model (QOLSM) that is currently used internationally for supports provision, organization transformation, and systems change. With the model's increasing and widespan use in research and practice, there is a need to evaluate the model's impact at the individual, organization, and systems levels. The purpose of this article is to outline six specific research-focused evaluation steps that allow researchers to evaluate the model and thereby enhance research practices is the field of IDD.

A measurement of self-determination for people with intellectual disability: description of the AUTODDIS scale and evidences of reliability and external validity.

Appropriate supports and instructional practices contribute to the development of self-determination. Also, research shows that the promotion of skills related to self-determination has been linked to the achievement of desired outcomes over the different life stages. Advances in self-determination require the development of assessment instruments because there is a reciprocal relationship between assessment and instruction.

Community Living, Intellectual Disability and Extensive Support Needs: A Rights-Based Approach to Assessment and Intervention.

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.

Longitudinal study of quality of life in acquired brain injury: A self- and proxy-report evaluation.

Unlabelled: After an acquired brain injury (ABI), the person remains with several impairments and disabilities that cause a decrease in his/her quality of life (QoL), which could change over time. The objective of the study was to analyse the evolution patterns of QoL in a sample of persons with ABI for one-year as well as the differences in proxy- and self-report versions of a QoL instrument.

Method: The sample comprised 402 persons with ABI with ages ranging between 18 and 91 years, whom 36.

Predictive Factors of Self-Reported Quality of Life in Acquired Brain Injury: One-Year Follow-Up.

The sequelae and disabilities that follow an acquired brain injury (ABI) may negatively affect quality of life (QoL). The main objective of the study is to describe the QoL after an ABI and identify the predictors of a better QoL. : Prospective cohort study with follow-up measurement after one-year.

Examining the Suitability of the List of Indicators Describing Age-Related Typical Support Needs.

The list of indicators is a form of training material used for the Supports Intensity Scale-Children's version (SIS-C). It is aimed at helping interviewers distinguishing between extraordinary and age-related typical support needs in children with intellectual and developmental disabilities (IDD) when implementing the SIS-C, and thus improve supports planning. The aim of this study is to adapt and test the list of indicators' content validity and rating scale's functioning in Spain.

A New Paradigm in the Field of Intellectual and Developmental Disabilities: Characteristics and Evaluation.

Background: A new paradigm, which we refer to as The Quality of Life Supports Paradigm, is emerging internationally in the field of intellectual and developmental disabilities. The new paradigm integrates the key concepts of "quality of life" and "supports". This article addresses the question of how one evaluates a new paradigm.

A Systematic Review of the Assessment of Support Needs in People with Intellectual and Developmental Disabilities.

An evaluation of support needs is fundamental to the provision of services to people with intellectual and developmental disabilities. Services should be organized by considering the support that people need to improve their quality of life and enforce their rights as citizens. This systematic review is conducted to analyze the rigor and usefulness of the available standardized tools for assessing support needs, as well as the uses of their results.