The quality of life of older people aging in place: a literature review.

PURPOSE: In order to cope with the challenges that are the result of an aging population, policies and services promote keeping elders in the community and letting them age in place rather than sending them to specialized institutions. Aging in place refers to the option where people can stay in their homes as they age. This policy option, however, poses various challenges and may also threaten the quality of life of the aging. A literature review was performed on the quality of life of older people aging in place to determine whether the actual assessment of quality of life can be used within aging in place. METHODS: Web of Science, PubMed, CINAHL, Sociological Abstracts and Social Science Research Network were searched for publications on "Ag(e)ing in place" AND "Quality of life." RESULTS: Although assessment is crucial to a policy pursuing a good quality of life, literature reveals that it is seldom performed. Only a small part of the studies report on the assessment of quality of life, including the instruments used and the results. The findings also indicate that there is no consensus on the definition of quality of life or its domains structures. CONCLUSION: As no existing instrument assessing the quality of life of older people aging in place could be identified, such a tool should be developed, because any policy towards this growing group of people should be complemented by an evaluation.

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. As described in the article, the first three eras resulted in formulating conceptualization, measurement, and application principles; developing quality of life conceptual and operational models; and constructing reliable and valid instruments to assess quality of life domains or domain-referenced indicators. The application era has focused on applying the concept of quality of life and its measurement, supports provision, conceptualization and theory, and systemic change. The final two eras have involved theory development and theory confirmation.

Diffusion of the Shared Citizenship Paradigm: Strategies and Next Steps.

The field of disabilities is being challenged to adopt a paradigm that can be used to guide the transformation of services, supports, and research practices to ensure and enhance the personal autonomy, rights, and community inclusion of people with disabilities. This article describes strategies associated with the systematic diffusion and sustainability of an innovation such as the emerging Shared Citizenship Paradigm (SCP), which has the potential to guide the transformation. The systematic diffusion process incorporates five components: knowledge, persuasion, decision, implementation, and confirmation. The systematic process also addresses the risks of dissonance, backlash, unintended consequences, and backsliding that can emerge when the sustainability of a paradigm is not supported. Throughout the article, we stress that meaningful change in organizations and systems requires use of a paradigm such as the SCP and its principles and foundation pillars to guide the change, and a systematic process such as that described in this article to bring about and sustain the change.

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. The results obtained show that a large majority of organizations have significant discrepancies between their current practices and evidence-based practices. The descriptive analysis allows affirming the usefulness of the scale for an organizational diagnosis and identification of strategies to guide transformational change.

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. Secondly, the article seeks to illustrate the connection between these two frameworks and highlight the importance of acknowledging and measuring the rights of people with IDD. Therefore, we posit that the new #Rights4MeToo scale is ideal for: (a) providing accessible means and opportunities for people with IDD to identify and communicate their needs regarding their rights; (b) enhancing the supports and services that families and professionals provide to them; and (c) guiding organizations and policies to identify strengths and needs in relation to rights and quality of life. We also discuss future research needs and summarize the main findings of this article, highlighting its implications for practice and research.

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. The synergy and alignment between these components underscore the importance of linking public policies with professional and organizational practices to promote social inclusion and enhance the quality of life for people with disabilities. We provide practical examples highlighting the collaborative potential of this synergy and emphasize the significance of evidence-based and person-centered practices in promoting equal rights and social inclusion for people with disabilities.

Professional Responsibility in the Field of Intellectual and Developmental Disabilities: Its Definition, Application, and Impacts.

This article addresses the need to clearly understand professional responsibility and the critical role it plays in the lives of individuals with intellectual and developmental disabilities (IDD), in shaping professions for the better, and in enhancing the functioning of society for the benefit of all. Understanding professional responsibility is especially timely during the current transformation that is occurring in the field of IDD. To that end, the article discusses what is a profession, who is a professional, and what is professional responsibility. Using a logic model framework, the article describes the components of professional responsibility that include its building blocks such as respect for the person, professional ethics and standards, critical thinking skills, and clinical judgment; its use of nine professional practices including empowerment, evidence-based practices, individualized supports, and person-centered outcome evaluation; its outcomes in terms of mutual trust, the improved effectiveness of clinical functions, and professional accountability; and its impacts regarding individual benefit, professional integrity, and societal enhancement.

The IDD Paradigm of Shared Citizenship: Its Operationalization, Application, Evaluation, and Shaping for the Future.

Changes in the field of intellectual and developmental disabilities (IDD) over the last 5 decades has resulted in the emergence of the shared citizenship paradigm. This paradigm is currently guiding the development of IDD-related policies and practices, and providing a framework for application, research-based inquiry, and evaluation. A shared citizenship paradigm is one that envisions, supports, and requires the engagement and full participation of people with IDD as equal, respected, valued, participatory, and contributing members of every aspect of society. The overall goals of the paradigm are to (a) further advance and focus on people with IDD as active agents in the change process, and (b) improve outcomes for people with IDD, including their access to and opportunity for shared citizenship. This article describes the paradigm's operationalization, application, evaluation, shaping for the future, and specific strategies to overcome implementation challenges.

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. RESULTS: After qualitative and quantitative analysis of the data, the final selection comprised 60 sociodemographic variables and 153 items that scored highly on all criteria and produced an excellent level of agreement between the experts. CONCLUSIONS: This bank of items and set of sociodemographic variables constitute the pilot version of a CRPD assessment and monitoring instrument with sufficient evidence of content validity, which may be useful in developing evidence-based practices and in detecting rights violations.

The evolving understanding of the construct of intellectual disability.

This article addresses two major areas concerned with the evolving understanding of the construct of intellectual disability. The first part of the article discusses current answers to five critical questions that have revolved around the general question, "What is Intellectual Disability?" These five are what to call the phenomenon, how to explain the phenomenon, how to define the phenomenon and determine who is a member of the class, how to classify persons so defined and identified, and how to establish public policy regarding such persons. The second part of the article discusses four critical issues that will impact both our future understanding of the construct and the approach taken to persons with intellectual disability. These four critical issues relate to the conceptualisation and measurement of intellectual functioning, the constitutive definition of intellectual disability, the alignment of clinical functions related to diagnosis, classification, and planning supports, and how the field resolves a number of emerging epistemological issues.

Enhancing research practices in intellectual and developmental disabilities through person-centered outcome evaluation.

BACKGROUND: Research practices in IDD need to align current values towards people with IDD, the current understanding of IDD, and best practices regarding change strategies and valued outcomes. AIMS: To describe the components to-and application of-a person-centered outcome evaluation model that meets the above criteria. METHODS AND PROCEDURES: A person-centered evaluation logic model is used to identify and describe a conceptual framework (input), a change strategy (throughput), personal outcomes (outcome), and meaningful impacts (output). OUTCOMES AND RESULTS: Specific person-centered outcomes and exemplary outcome indicators are presented for two outcome evaluation frameworks: human functioning dimensions, and the four theoretical perspectives on IDD: biomedical, psychoeducational, sociocultural, and justice. CONCLUSIONS AND IMPLICATIONS: A person-centered approach to outcome evaluation enhances research practices in IDD by identifying and assessing valued personal outcomes that align current values, understanding, and best practices; increases transparency; facilitates accountability; and expands understanding.

Ongoing Transformation in the Field of Intellectual and Developmental Disabilities: Taking Action for Future Progress.

There has been a significant transformation in the field of intellectual and developmental disabilities (IDD) over the last 5 decades. Although this transformation has profoundly influenced multiple stakeholders, the field is currently at a critical juncture and facing a number of social and political challenges. Given the relevance of the question, "where is the field of IDD and where do we go," the present article describes the field's transformation, and suggests future action steps to facilitate and sustain the transformation. The seven action steps discussed in the article relate to using precise terminology, incorporating a functional and holistic approach to IDD, embracing the supports model and evidence-based practices, implementing outcome evaluation, empowering individuals and families, understanding better the multidimensional properties of context, and incorporating an explicit notion of professional responsibility.

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. These steps involve: (1) operationalizing components of the QOLSM; (2) relating QOLSM components to the type of research planned and intended outcome indicators; (3) gathering evidence and establishing its credibility; (4) interpreting and communicating the results; (5) implementing research outcomes at the level of the microsystem, mesosystem and macrosystem; and (6) judging the impact of the model. These steps delineate a research framework that is based on a systematic approach to evidence-based practices and enhanced research practices in the field of IDD.

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. METHOD: This is a conceptual work that describes five characteristics of a paradigm. The characteristics are based on the groundbreaking work of relevant authors in the field of intellectual and developmental disabilities, quality of life, supports, and evaluation. RESULTS: The five characteristics are that a paradigm is theory driven, ethical, flexible, adaptable, and measurable. The article especially delves into the fifth characteristic and provides specific examples of how to evaluate the new paradigm. CONCLUSIONS: The new paradigm encompasses core values, accommodates contextual factors, and can be used for multiple purposes to positively impact the development and implementation of value-based policies and practices that enhance the quality of life and personal well-being of people with intellectual and developmental disabilities.

A balanced approach to decision-making in supporting people with IDD in extraordinarily challenging times.

A balanced approach to decision-making during challenging times is necessary in order to avoid risks that jeopardize the lives and wellbeing of people with intellectual and developmental disabilities (IDD). The COVID-19 pandemic is the recent example of a crisis that places people with IDD at risk for lopsided societal reactions and threats to them or their wellbeing. Attention to decision-making is required to safeguard hard-earned achievements, including public policies and organization practices that emphasize human and legal rights, self-advocacy, individualized supports, inclusive environments, choices, and community inclusion. We suggest maintaining a holistic approach to understanding the lives and human functioning of people with IDD, a balanced approach to accountability and performance management, an understanding of the multidimensional properties of context, and a heightened vigilance in professional responsibility. A balanced approach will strengthen the likelihood of a return to high quality services and supports to people after the crisis, reduce loss of critical progress, and enhance stability across future social, political, and financial changes and challenges.

Using a Multidimensional Model to Analyze Context and Enhance Personal Outcomes.

This article describes a multidimensional model of context that identifies, defines, and explains three key properties of context: multilevel, multifactorial, and interactive. The use of this model to drive a context-based enhancement cycle is also described. The enhancement cycle involves four steps: (a) identifying current interactions that influence personal goals and outcomes; (b) targeting the interaction that will have the highest impact on selected outcomes for the individual; (c) manipulating the contextual factors that will positively influence the interaction; and (d) evaluating the impact of the manipulated interaction on personal outcomes. The article concludes with a discussion of the implications of using a multidimensional model of context to enhance personal outcomes.

Going beyond Environment to Context: Leveraging the Power of Context to Produce Change.

This article discusses the processes and implications of going beyond environment to context. The article (a) provides an operational definition of context; (b) describes a multidimensional model of context that views context as being multilevel, multifactorial, and interactive; (c) describes how conceptual models of quality of life, human rights, and human functioning can be used in conjunction with the multidimensional model of context to identify opportunities and develop context-based change strategies that improve quality of life, human rights, and human functioning outcomes; and (d) describes a four-step approach to leveraging an understanding of context to produce change. The article concludes with a discussion of the advantages of and barriers to moving beyond environment to context.

Measurable Indicators of CRPD for People with Intellectual and Developmental Disabilities within the Quality of Life Framework.

This article proposes the quality of life (QOL) construct as a framework from which to develop useful indicators to operationalize, measure, and implement the Articles of the Convention on the Rights of Persons with Disabilities (CRPD). A systematic review of the scientific literature on people with intellectual and developmental disabilities (IDD) was carried out, with the aim of identifying personal outcomes that can be translated into specific and measurable items for each of the CRPD Articles aligned to the eight QOL domains. Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, the systematic review was conducted across the Web of Science Core Collection, Current Contents Connect (CCC), MEDLINE, KCI-Korean Journal Database, Russian Science Citation Index and SciELO Citation Index, for articles published between 2008 and 2020. A total of 65 articles focusing on people with IDD were selected. The results were grouped into four broad categories: conceptual frameworks used to monitor the CRPD; instruments used to assess the rights set out in the CRPD; recommendations on the use of inclusive research; and indicators or personal outcomes associated with specific rights contained in the CRPD.

The contemporary view of intellectual and developmental disabilities: Implications for psychologists.

BACKGROUND: The field of intellectual and developmental disabilities (IDD) is currently experiencing a significant transformation that encompasses an integrated approach, especially regarding shared aspects such as a focus on the human and legal rights, the eligibility for services and supports, and an emphasis on individualized supports provided within inclusive community-based environments. Accompanying this transformation is the increased need of precision in both the operational definitions of IDD-related constructs, and the terminology used to describe the respective construct. METHOD: the specialized literature was revised, and previous works on the subject by the authors were updated. RESULTS: This article provides psychologists with the current definition of intellectual disability, operational definitions of intellectual disability and developmental disabilities constructs and associated terminology, and the parameters of an integrated approach to disability. CONCLUSIONS: Implications for psychologists who are involved in diagnosis, classification, and planning supports for persons with intellectual or developmental disability are discussed.

Applying the concept of quality of life to Israeli special education programs: a national curriculum for enhanced autonomy in students with special needs.

This study provides a description of the design and development of guidelines and programs for a national core curriculum for special education in Israel. Israel was exposed during the 1970s to the ideology of normalization. Later on, toward the end of the 1980s, the concept of quality of life was added. Several research studies were conducted, resulting in the following core ideas about education: a shift of emphasis from teaching independent-living skills to teaching autonomy, self-awareness, self-direction, and interdependence is required. On the basis of these ideas, a new model of instruction was devised and termed the 'cycle of internalized learning' (CIL). The CIL is based on a holistic orientation toward the student and builds on abilities rather than disabilities. The peer group is the basic unit of instruction. Attention is on processes and outcomes. The CIL involves several clearly defined teaching steps: (i) opening--the presentation of the subject matter; (ii) discussion--a conceptual analysis of the subject; (iii) open conversation--students discuss the issues they raised during the first session, express their personal life experiences while applying the new concepts they learned, and suggest possible solutions to problems; (iv) trying out the solutions suggested by students; and (v) repeated discussions, to arrive at personal and social conclusions. Currently there are three published units of the CIL: (i) Social Education, (ii) Career Education, and (iii) Towards Leaving Home for Independent Living in the Community. The fourth unit, on citizenship education through the use of computers, is in its final stages of preparation. The success of the implementation of the program is expressed both at the students' level--as an enhanced sense of self-worth and self-confidence, as well as enhanced academic achievements and social skills--and at the teachers' level--as a paradigm shift from a medical model of approach to students with disabilities to a social and humanistic one.