1	Enhancing the Quality of Life for People with Cognitive Disabilities Through Technology Robert L. Schalock, Ph.D.
2	Context of Presentation The Emerging Disability Paradigm The Conceptualization, Measurement and Application of the Quality of Life Construct
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4	Table 1 The Impact of Technology on Disablement Functional Limitations: Activities of Daily Living and Instrumental Activities of Daily Living Personal Well-Being: Core Quality of Life Domains Individualized Supports: (a) Life Activity Areas (Home Living, Community Living, Lifelong Learning, Employment, Health & Safety, Social); (b) Exceptional Medical Support Needs; (c) Exceptional Behavioral Support Needs Personal Competence and Adaptation: (a) Conceptual Skills (e.g. language, money management, reading and writing, self-direction); (b) Social Skills (e.g. interpersonal, self-esteem); (c) Practical Skills (e.g. occupational skills, maintaining a safe environment, ADLS and IADLS)
5	Historical Interests in Quality of Life A shift in focus away from the belief that scientific, medical, and technological advances alone would result in improved life, towards an understanding that personal, family, community, and societal well-being emerge from complex combinations of these advances plus values, perceptions, and environmental conditions The next logical step from the normalization movement that stressed community-based services to measuring the outcomes from the individual’s life in the community The rise of consumer empowerment and patients’ rights movements and their emphasis on person-centered planning, personal outcomes, and self-determination The emergence of sociological changes that introduced the subjective or perceptual aspects of quality of life and the individual and personal characteristics involved
6	Current Use of Quality of Life Concept Sensitizing notion that gives us a sense of reference and guidance from the individual’s perspective, focusing on the person and the individual’s environment Unifying theme that is providing a framework for conceptualizing, measuring, and applying the quality of life construct Social construct that is being used as an overriding principle to enhance an individual’s well being and to collaborate for programmatic, community, and societal change
7	Quality of Life Domains
8	The term “quality of life domains” refers to the set of factors composing personal well-being. Quality of life domains should be thought of as the set of elements to which a variable is limited, or the range over which the concept of quality of life extends.
9	Table 2 Core Quality of Life Domains Emotional Well-Being Interpersonal Relations Material Well-Being Personal Development Physical Well-Being Self-Determination Social Inclusion Rights
10	Quality of Life Indicators
11	“Core quality of life indicators” are QOL domain-specific perceptions, behaviors, or conditions that give an indication of the person’s well-being. These indicators are currently being operationalized and used in quality of life measurement.
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13	QOL Core Domain Indicators and Descriptors Physical Well-Being Health (functioning, symptoms, fitness, nutrition) Activities of Daily Living (self care skills, mobility) Leisure (recreation, hobbies) Self-Determination Autonomy/Personal Control (independence) Goals and personal values (desires, expectations) Choices (opportunities, options, preferences) Social Inclusion Community integration and participation Community roles (contributor, volunteer) Social supports (support network, services) Rights Human (respect, dignity, equality) Legal (citizenship, access, due process) Table 3 (Cont.) Core Indicators and Descriptors per Core Quality of Life Domain
14	Table 4 The Impact of Technology on Quality of Life Outcomes Personal Well-Being Happiness/Satisfaction Self-Image Social Inclusion Role Status Personal Meaning
15	Multiple Uses of Quality Indicators Personal reactions Research Program evaluation Decision making
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17	Guidelines Regarding The Multiple Uses of Quality Indicators One needs to be careful considering empirical results related to quality of life to distinguish whether the assessments used measure subjective well-being or objective life circumstances and experiences If one wants to determine whether people with intellectual disabilities are as satisfied with life as other population subgroups, then assess subjective well-being and compare If one wants to evaluate environmental design or service programs in a sensitive way, one should use objective indicators of personal experience and circumstances
18	Predictors of Assessed Quality of Life Personal characteristics: health status, adaptive behavior index, and maladaptive/ challenging behavior index Environmental variables: perceived social support, type of current residential setting, number of household activities participated in, earnings, transportation availability, and integrated activities Care provider characteristics: worker stress score, satisfaction working with the client, and job satisfaction
19	Effects of Different Data Collection Strategies: Several Findings There is a low correlation between subjective and objective measures Satisfaction measures tend to be high The use of consumers with intellectual disabilities as surveyors reduces the need for proxy respondents Simplifying the language and response formats used results in a significant increase in self responses Response analyses indicate little if any response acquiescence If one builds proxy responses into the multivariate analysis, then one is able to analyze the effect of the proxies
20	Conclusions The concept of quality of life is a psychological and social construct to use in critical thinking about technology and its impacts. Quality of life domains can be operationalized through core indicators. Quality of life indicators can be measured reliably and validly across multiple populations. Quality of life-related outcomes reflect personal well-being, personal competence, and role status. The quality of life construct and the emerging disability paradigm are closely related. Technology can impact both one’s disability and one’s quality of life.
21	Factors Involved in Applying the Quality of Life Construct
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26	Quality Outcomes Are Related to Quality Products and Services
27	Products and Services Criteria Available Accessible Appropriate Affordable
28	Conclusions The concept of quality of life is a psychological and social construct to use in critical thinking about technology and its impacts. Quality of life domains can be operationalized through core indicators. Quality of life indicators can be measured reliably and validly across multiple populations. Quality of life-related outcomes reflect personal well-being, personal competence, and role status. The quality of life construct and the emerging disability paradigm are closely related. Technology can impact both one’s disability and one’s quality of life. One’s quality of life is influenced by megatrends, societal structures, and opportunities and values Technological products and services need to meet the following criteria: available, accessible, appropriate, affordable