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.
•COVID-19 presents significant risks to progress that has been achieved in the lives of people with IDD.•Decision-making should incorporate a holistic approach to understanding the lives and human ...functioning of people with IDD.•Analysis of the multidimensional properties of context and heightened vigilance in professional responsibility will aid decisions.•A balanced approach will help assure a return to high quality services and supports, reduce loss of critical progress, and enhance stability.
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.
•A person-centered outcome evaluation logic model is described whose use and application involves a conceptual model, a change strategy, valued personal outcomes, and meaningful impacts.•Specific ...person-centered outcome indicators are presented for two outcome evaluation frameworks: human functioning dimensions, and a holistic understanding of IDD composed of biomedical, psychoeducational, sociocultural, and justice perspectives.•As described and discussed, a person-centered approach to outcome evaluation enhances research practices in IDD by providing an integrated research approach to IDD, increasing transparency, facilitating accountability, and expanding understanding.
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.
To describe the components to—and application of—a person-centered outcome evaluation model that meets the above criteria.
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).
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.
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.
Intellectual disability originates during the developmental period and is characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in ...conceptual, social, and practical adaptive skills. In this article, we present a brief history of the diagnostic criteria of intellectual disability for both the DSM-5 and AAIDD. The article also (a) provides an update of the understanding of adaptive behavior, (b) dispels two thinking errors regarding mistaken temporal or causal link between intellectual functioning and adaptive behavior, (c) explains that there is a strong correlational, but no causative, relation between intellectual functioning and adaptive behavior, and (d) asserts that once a question of determining intellectual disability is raised, both intellectual functioning and adaptive behavior are assessed and considered jointly and weighed equally in the diagnosis of intellectual disability. We discuss the problems created by an inaccurate statement that appears in the DSM-5 regarding a causal link between deficits in intellectual functioning and adaptive behavior and propose an immediate revision to remove this erroneous and confounding statement.
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.
•Evolution of conceptualization, measurement and application principles on the concept of quality of life.•Mediating and moderating factors that influence quality of life.•Theory definition and model development of quality of life.•Quality of life enhancement strategies and focus areas.•Quality of life theory-based hypotheses.
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.
•Intellectual and developmental disability organizations must respond to their current challenges through transformational change processes that guarantee their sustainability.•Professional practices have been identified as the most facilitating element of organizational culture to initiate transformational change processes.•The measurement of organizational effectiveness and efficiency through evidence-based practices on the OEES scale allows IDD organizations to plan transformational change processes.•The results of the participating entities in organizational effectiveness show a medium degree of implementation of evidence-based practices.•The standard practices of organizational efficiency present a low level of implantation in the organizations.•The diagnosis of organizations evaluated shows the need to undertake transformational processes that guarantee their sustainability in the medium term.
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.
This article discusses three steps involved in moving us toward a theory of individual quality of life: developing a conceptual model, integrating theory components, and applying and evaluating the ...theory. Each of the proposed steps is guided by established standards regarding theory development and use. The article concludes with a discussion of criteria that can be used to evaluate the theory and the contribution that a theory of individual quality of life would make to the field of disability.
The enormous effects of public policy-both for good and for ill-in the lives of people with intellectual disability and related developmental disabilities demand the development of stronger tools for ...policy analysis, and more effective strategies for policy implementation and evaluation. The purpose of this special issue is to help readers understand the complexities of disability policy and the factors that influence its successful development, implementation, and evaluation; and to encourage readers to expand their thinking and actions regarding the role they play in disability policy in a time of change.
•The concepts of ‘quality of life’ and ‘supports’ provide a best practice framework for person-centered outcomes evaluation.•A Quality of Life Supports Model (QOLSM) provides a service delivery model ...for supports provision, organization, and systems change.•The QOLSM integrates significant characteristics of the current transformation in the field of IDD.•Six specific research-focused evaluation steps are proposed to evaluate the QOLSM and its impact on the field.•These six steps allow researchers in the field of IDD to develop evidence-based practices and enhance their research practices.
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.
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