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Quality of life, Assessment,

Person-centered planning is a well known and widely used approach to individual program planning in the field of intellectual and developmental disabilities. Its purpose is to develop collaborative supports focused on community presence, community participation, positive relationships, respect, and competence. Because there is little research on its effectiveness, our purpose here was to (a) review the current status of effectiveness research; (b) describe its effectiveness in terms of outcomes or results; and (c) discuss the effectiveness of person-centered planning in relation to evidence-based practices. Analyzed studies suggest that, overall, this planning has a positive, but moderate, impact on personal outcomes for this population. The body of evidence provided in this review is weak with regard to criteria for evidence-based research.

Education and rehabilitation programs in the field of intellectual disabilities are developing specific strategies related to demonstrated personal outcomes, quality of life (QOL)‐related services and supports, evidence‐based practices, and quality improvement. The purpose of this article is to summarize key aspects of these strategies within a two‐component framework: the concept of QOL and systems thinking. Based on our collective experiences and published literature, four specific strategies are presented and discussed: mental models, assessment, service delivery practices, and quality improvement (QI). Essential guidelines for the successful implementation of these strategies are then presented, along with an exemplary application of each strategy. Each example shows the significant role of the consumer, the organization, and the larger system in organizational change, QI, and the enhancement of personal outcomes.

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Quality of life scores obtained from self-reports might not be the same as those obtained from a family member or direct support staff. The purpose of the two studies reported in this article was to evaluate further the impact on quality of life scores of self-report vs. proxy ratings. The Personal Outcomes Scale was administered to persons with an intellectual disability. The selfreport version, as well as the direct observation version, was administered. In the use of the direct observation form, direct support staff and family members acted as respondents. Study 1, which evaluated the consistency between self-report and direct observation data using support staff as proxy respondents, found significant mean differences between the two respondent groups in three quality of life domains and an acceptable level of internal consistency for both self-report and direct observation strategies. Study 2, which evaluated the difference between self-report (by the client) and proxy ratings (of the same individual) using direct observation interviews with family and support staff as respondents, found some differences between client and staff ratings but no significant differences between client and family ratings. Correlations between respondent group scores fell within the "good category." The authors noted the need for methodological pluralism in quality of life assessment, the importance of self-report by persons with intellectual disability, and the need to develop better and more reliably user-friendly strategies to evaluate quality of life outcomes for those individuals who either do not or cannot respond for themselves.

This article discusses the use of assessed quality of life scores for organization and systems‐level monitoring and reporting, quality improvement, and research. Information presented is based on the experiences of policy makers, service/supports providers, and researchers who have used an eight‐domain quality of life model and the measurement of domain‐referenced indicators. In reference to each use, we provide examples, identify critical issues, and suggest a number of practice guidelines.

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