Miguel Ángel Verdugo

Cross-cultural study of quality of life indicators.

The concept of quality of life is increasingly being used internationally in the field of intellectual disabilities. We surveyed three respondent groups representing five geographical groupings on the importance and use of the 24 core quality of life indicators most commonly reported in the international quality of life literature. Results suggest (a) similar profiles on importance and use across respondent and geographical groups, but differences in the frequency per response category; (b) significant differences in mean quality of life importance and use scores for both respondent and geographic groupings; and (c) factors on importance and use generally grouped into eight core quality of life domains. Results are discussed in reference to the etic (universal) and emic (culture-bound) properties of the quality of life concept.

Conceptualizing Supports and the Support Needs of People With Intellectual Disability

This is the third in a series of perspective articles (Schalock et al., 2007; Wehmeyer et al., 2008) from the Terminology and Classification Committee of the American Association on Intellectual and Developmental Disabilities (AAIDD). The purpose of these articles is to share our thoughts on critical issues associated with terminology, definition, and classification in the field of intellectual disability and to seek input from the field as we prepare the 11th edition of AAIDD’s Diagnosis, Classification, and System of Supports Manual (the working title). In the first article (Schalock et al., 2007), we explained the reasons for shifting from the term mental retardation to intellectual disability. Although the two terms cover the same population of individuals, we concluded that intellectual disability was the better term because it

The Conceptualization and Measurement of Quality of Life: Implications for Program Planning and Evaluation in the Field of Intellectual Disabilities.

The concept of quality of life (QOL) is increasingly being used in the field of intellectual disabilities as a conceptual and measurement framework for program planning and evaluation. This article describes the development of a QOL conceptual and measurement framework, and summarizes how this framework is currently being used both nationally and internationally to assess and report personal QOL-related outcomes, to guide quality improvement strategies, and to evaluate the effectiveness of those strategies. Implications of such use are discussed, including those related to understanding mental models, developing internal data systems, supporting organization change, and building on current public policies. The article concludes with reference to the evolving nature of the QOL concept and the impact of this on model development and transdisciplinary research.

The concept of quality of life and its role in enhancing human rights in the field of intellectual disability.

BACKGROUND The changed societal views of persons with disabilities are reflected in the 2006 United Nations Convention on the Rights of Persons with Disabilities. However, what is not specified in the Convention is how to operationalise and measure the Articles composing the Convention, and how to use that information to further enhance the human rights of persons with disabilities. METHOD The authors analyse the relationships between eight core quality of life domains and the 34 Articles contained in the Convention. RESULTS There is a close relationship between the core quality of life domains and the 34 Articles contained in the Convention. Furthermore, the current status of these Articles can be evaluated through the assessment of indicators associated with the eight core quality of life domains. CONCLUSIONS Based on the assessment of these quality of life-related outcomes, three strategies can be used to enhance the human rights of persons with intellectual disability. These three are to employ person-centred planning, publish provider profiles and implement a system of support.

The Maltreatment of Intellectually Handicapped Children and Adolescents.

Eleven and a half percent of intellectually handicapped children in Castilla-León are subjected to maltreatment; in these, physical neglect is the most frequent. These findings come from a questionnaire (CEMND) specifically designed to detect and discover the prevalence of maltreatment in a sample of 445 mentally retarded children. It was discovered that problems between the childs parents, the childs behavior and the interaction between both aspects were significant factors in situations of maltreatment.

Examining the Factor Structure and Hierarchical Nature of the Quality of Life Construct

There is considerable debate in the area of individual quality of life research regarding the factor structure and hierarchical nature of the quality of life construct. Our purpose in this study was to test via structural equation modeling an a priori quality of life model consisting of eight first-order factors and one second-order factor. Data were collected from 769 individuals with mild or moderate intellectual disability from 15 countries in four geographic regions. They all completed a multidimensional quality of life questionnaire. The presence of a single second-order factor in quality of life was empirically demonstrated through confirmatory factor analysis. Comparison of two alternative second-order quality of life factor models was further evaluated. Implications for future research, practice, and public policy regarding services to individuals with intellectual disability are also discussed.

The Intellectual Disability Construct and Its Relation to Human Functioning

The American Association on Intellectual and Developmental Disabilities’ (AAIDD) Terminology and Classification Committee has two primary purposes in publishing this Perspective: (a) to share our thinking about the construct underlying the term intellectual disability (henceforth the intellectual disability construct) and its relation to human functioning and (b) to ask for input from the field because the committee is preparing a proposal for the upcoming Definition, Classification and Systems of Supports manual, to be published in 2009 or 2010. The article has three sections. In the first section, we make a distinction between an operational definition, which operationalizes the intellectual disability construct and provides the basis for diagnosis and classification, and a constitutive definition, which explains the underlying construct and provides the basis for theory– model development and planning individualized supports. In the second section, we provide an historical overview of how the construct underlying the term mental retardation (henceforth, the mental retardation construct) differs from the construct underlying intellectual disability. In the third section, we describe the parameters to the proposed AAIDD theoretical framework of human functioning that reflects our current understanding of the multidimensionality of human functioning that underlies the intellectual disability construct and the significant role that individualized supports play in human functioning. The article concludes with a brief discussion of the benefits to the field that accrue from a clear understanding of both the differences between an operational and constitutive definition and the fundamental properties of the intellectual disability construct. Operational Versus Constitutive Definitions

Evidence-based practices in the field of intellectual and developmental disabilities: An international consensus approach §

As evidence-based practices become increasingly advocated for and used in the human services field it is important to integrate issues raised by three perspectives on evidence: empirical-analytical, phenomenological-existential, and post-structural. This article presents and discusses an evidence-based conceptual model and measurement framework that integrates these three perspectives and results in: multiple perspectives on evidence-based practices that involve the individual, the organization, and society; and multiple interpretation guidelines related to the quality, robustness, and relevance of the evidence. The article concludes with a discussion of five issues that need to be addressed in the future conceptualization, measurement and application of evidence-based practices. These five are the need to: expand the concepts of internal and external validity, approach evidence-based practices from a systems perspective, integrate the various perspectives regarding evidence-based practices, develop and evaluate evidence-based practices within the context of best practices, and develop a set of guidelines related to the translation of evidence into practice.

Quality of Life Model Development and Use in the Field of Intellectual Disability

This chapter makes a distinction between logic models that provide a visual map or narrative description of how specific program components are related to a program’s desired results and an operational model that depicts key concepts and variables involved in understanding, operationalizing, and applying a phenomenon such as the quality of life (QOL) construct. The four sections of the chapter (a) describe how the authors have approached the first step of model development (formulating and validating a QOL conceptual and measurement framework); (b) describe how the model has been operationalized through its definition, components (concepts, indicators, and moderator–mediator variables), and premises; (c) suggest a number of criteria that can be used to evaluate any empirically derived model; and (d) reference how the model has been applied in four areas important to the application of the QOL construct in the field of intellectual and closely related developmental disabilities. The chapter should be read and understood within the context of the significant conceptual and empirical work that has occurred over the last three decades regarding the QOL concept. The work described in this chapter reflects the evolution of the concept from a philosophical concept to a measurable construct, and from a measurable construct to an operational model supported by considerable data, serving as a basis for application and hypothesis testing.

Patterns and determinants of leisure participation of youth and adults with developmental disabilities.

BACKGROUND People with developmental disabilities are at high risk for a limited participation in leisure activities. The aim of this study was to investigate the participation in, preference for and interest in leisure activities of young and adults with developmental disabilities, and to examine the factors associated with leisure activity. METHODS A cross-sectional design was used with a convenience sample of 237 people aged 17 to 65, living in the community. Leisure participation was assessed with the Spanish version of Leisure Assessment Inventory. Percentages were calculated by types of activity, and repeated measures anovas were used to analyse the differences between types of activities, and mixed anovas to analyse the factors that explain differences in leisure activity participation, preference and interest. RESULTS Leisure social activities and recreation activities at home were mostly solitary and passive in nature and were identified as those being most commonly engaged in. Respondents expressed preference for more social and physical activity, and they were interested in trying out a large number of physical activities. Age and type of schooling determine participation in leisure activity. The results underscore the differences in leisure activity participation, preference and interest depending on the severity of the disability. CONCLUSIONS The findings reveal interesting patterns of participation in leisure activities from the viewpoint of youngsters and adults with developmental disabilities. Leisure participation among people with developmental disabilities is likely to be more affected by environmental factors than by personal factors.