Quality of life is a social construct that is measured by what are considered to be its most appropriate indicators. Quality of life measurement in intellectual disability reflects a variety of indicators, often grouped under life domains. Subjective and objective methods of measuring indicators each have strengths and drawbacks, but it is…

We provide the first descriptive summary of selected programs developed to help expand the scope of coverage, mitigate family financial hardship, and provide health and support services that children with intellectual and developmental disabilities need to maximize their functional status and quality of life. State financing initiatives were…

"Participation"--defined as engagement in life situations, including leisure and recreational activities--is associated with the improvement of people with disabilities' quality of life. Several specific instruments assess leisure, but none of them has been adapted to the Spanish context. The goal of this study is to adapt and validate the Spanish…

Culture recurs as an important but under-investigated variable associated with resident outcomes in supported accommodation for people with intellectual disability. This study aimed to conceptualize the potential dimensions of culture in all group homes and describe the culture in underperforming group homes. A secondary analysis, using an…

This article presents the framework of a dynamic approach to quality of life (QOL) enhancement based on the conceptualization and measurement of individual-referenced quality of life. Sections of the article summarize the premises of QOL enhancement, provide the rationale for a dynamic approach to QOL enhancement, discuss six components of QOL…

Using data from a survey of 1,099 families who have a child with Fragile X syndrome, we examined adaptation across 7 dimensions of family life: parenting knowledge, social support, social life, financial impact, well-being, quality of life, and overall impact. Results illustrate that although families report a high quality of life, they struggle…

A structured interview survey was conducted in a major city in Taiwan to explore and compare older and younger family primary caregivers' well being and their future caregiving plans for these adults with intellectual disability. The sample size was 315 caregivers who were 55 years or older and who cared for adults with intellectual disability and…

Research investigation of older adults with autism spectrum disorders (ASD) noticeably lags behind studies of children and younger adults with ASD. This article reviews the current literature regarding a range of quality of life outcomes of aging adults with ASD. Studies that have addressed life expectancy, comorbid physical and mental health…

As life expectancy of people with intellectual disability (ID) has increased, there has been a concurrent increase in age-related illnesses and conditions similar to that of the general population. These circumstances result in people with ID dying from typical life-ending conditions, and thus, they require similar end-of-life services such as…

Consumer choice is a key concept in developmental disability intervention, but relatively little quantitative research has focused on the relationship between choice and quality of life. This study used data from Washington state's Division of Developmental Disabilities 2002 National Core Indicators study (Human Services Research Institute, 2001a,…

Regular physical activity is vital for adult individuals with intellectual disabilities. The purpose of this review was to assess critically the evidence on effectiveness of physical activity interventions for adults with intellectual disability. An electronic database search was conducted. Research was then assessed for methodological rigor, and…

Parents and professionals typically report problem behavior as a significant concern for children with fragile X syndrome. In the present study, the authors explored whether behaviorally based interventions would result in a reduction in problem behavior and an improvement in quality of life for 3 children with fragile X syndrome and their…

A cross-sectional descriptive study was performed to evaluate resuscitation decisions and factors that impact these choices for young people with severe developmental disabilities residing in a skilled nursing facility. Decision-makers were provided with information to clarify resuscitation preferences. Parents/guardians of 30 of the 67 residents…

In the past 10 years, people have witnessed significant changes in the nature and extent of the publicly financed systems of services and supports for individuals with developmental disabilities and their families. Growing service needs, declining state revenues, mounting pressures on federal and state Medicaid budgets, and heightened federal…

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…