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Health represents the dynamic balance of physical, mental, social, and existential well‐being in adapting to conditions of life and the environment. Health is essential for the quality of life (QoL) of all individuals, including those with intellectual disability (ID). People with ID experience health inequities and barriers to quality health care that must be addressed to foster the QoL of this population. This paper illustrates how poor health negatively impacts each of the eight domains of the QoL model proposed by Shalock and Verdugo (2002) (e.g., health conditions limit work performance, decreasing opportunities for personal development and self‐determination). Suggestions for healthcare practices and behaviors that would improve the quality of healthcare provided to people with ID, and thus their health and QoL, are offered (e.g., engaging people with ID in the medical conversation, talking to them in plain language and without jargon enhances the personal development, self‐determination, interpersonal relationships, and social inclusion domains of QoL). Finally, we suggest actions that people with ID and their families might implement to maximize their health and wellness (e.g., maintaining a healthy lifestyle, and using the health promotion resources provided by disability organizations). [ABSTRACT FROM AUTHOR]

In this paper, we discuss the applicability of the consensus document, prepared by the Special Interest Research Group on quality of life (QoL) of the International Association for the Scientific Study of Intellectual Disabilities in August 2000, for persons with Profound Intellectual and Multiple disabilities (PIMD). We compare our findings from previous empirical research with some elements of the themes and principles of the consensus document. We will reflect (1) on the domains of QoL mentioned in the consensus document, and (2) on the assessment by proxies. We recommend reflection on the following aspects when composing a new consensus document, which includes QoL of persons with PIMD: first, reconsider whether all eight domains are useful in care practice for—and research about—persons with PIMD. We assert that the domains of health, well‐being, capability to influence the environment, and also (family) relationships, are particularly relevant for the QoL of persons with PIMD and, second, accept interpretation of signals and signs by proxies in the assessment of QoL in persons with PIMD and do not value this as second best. [ABSTRACT FROM AUTHOR]

Disability support systems have not consistently used family‐centered practices when supporting families of children with disability. Families have experienced structural and interpersonal barriers that have negatively impacted not only their child's quality of life, but also family quality of life (FQOL). The eight domains of QOL as defined by the International Association for the Scientific Study of Intellectual Disabilities [IASSID] are reflected in a family‐centered model of support developed for children and young people by Microboards Australia. The Microboards for Children [MB4C] model reflects best family centered practice based on principles that integrate well with recognised FQOL domains such as family relationships, support from other people and from disability‐related services, and leisure and enjoyment of life. The MB4C model aims to enhance families' knowledge, skills, confidence, and sense of wellbeing to support them develop a vision for an active, socially connected, and happy future with their child. The model consists of a structured network of formal and informal support to enhance not only their child or young person's personal relationships, social networks, and community inclusion but also to enable parents and siblings to access education, employment and to enjoy life in their community – all indicators of FQOL. In this paper we explore how these features of MB4C policies and practice align with family‐centered practice principles and with FQOL domains. We argue that the MB4C model provides an example of how FQOL may be enhanced by a holistic family‐centered disability service system that works in partnership with families with disability. [ABSTRACT FROM AUTHOR]

Although family quality of life (FQOL) and the family‐centered approach (FCA) are often conceptually linked, empirical research on their relation is scarce. This study investigated the relation between the FCA and FQOL in families with a child (0–18 years) with an intellectual disability receiving home‐based support (HBS) in Flanders. The impact of the parental work situation and the child's support needs on FQOL (domains) were studied too. Through the Helpgiving Practices Scale (HPS) and the Enabling Practices Scale (EPS), parents of participating families (n = 58) reported about the FCA in their families' HBS. Using the Beach Center FQOL Scale, mainly mothers reported about their families' quality of life. The relation between the realization of the FCA, parental employment, and the child's support needs on the one hand, and FQOL on the other hand was studied via multiple regression analyses. Additionally, the best predicting model was determined for FQOL (domains). Globally, a positive relation between FQOL and the FCA was found. Dependent on the FQOL domain, a different relation was identified with the family‐centered components. Components of the EPS (i.e., comfort and parental autonomy) were better predictors than those of the HPS. The parental work situation was a significant predictor for satisfaction regarding total FQOL (with and without disability‐related support), family interactions, and parenting. The child's support needs were a significant predictor for emotional well‐being. As the first of its kind, this study investigated the relation between FQOL and the FCA in detail. More, in depth, and especially long‐term research is, however needed to fully understand the relation between FQOL and its contributors. [ABSTRACT FROM AUTHOR]

Quality of life (QoL) has become an important outcome in evaluations of services and support for people with intellectual disabilities (ID). Many people with ID request more say and want to be involved in the development of services and support provision. The original Uppsala QoL (UQoL) model consists of a general essence and hierarchically ordered themes and describes QoL from the perspective of people with ID through individual interviews. The aim of the present study is to examine the UQoL regarding its inherent component parts and to explore the interrelationship between them. The study contributes to the understanding of the concept of QoL from the perspective of people with ID. Focus group interviews were conducted with people with mild and moderate ID. The results indicate that QoL is to experience well‐being. The key component of QoL is to experience adult social status. which is determined by whether the individual experiences having control of their life, experiences a sense of personal safety and feels social belonging. In concordance with the original model, the UQoL2 is mainly made up of components equivalent to those frequently reported in the QoL literature. Nevertheless, some differences require attention. The primary component, adult social status, has not previously been highlighted in the QoL literature. The point of departure in the UQoL model is the users´ perspective rather than the user perspective as perceived by professionals or researchers. The UQoL is not primarily linked to the quality of service provision, but to peoples' daily life. A revised version of the original UQoL is suggested. Unlike the original model, other than the fact which that adult social status is superior, the components are not hierarchically organized, rather the interrelation between them is emphasized. [ABSTRACT FROM AUTHOR]

Subjective well-being refers to an individual's satisfaction or happiness with their life. The construct is often measured with the Personal Wellbeing Index (PWI), which has been adapted for children of different ages, and adults with an intellectual disability (ID). However, there is no subjective well-being measure for adolescents with an ID. This study reports on the PWI-School Children with Intellectual Disability (PWI-SCwID), which trialled a pretesting Likert training protocol to enable valid completion of the questionnaire. From this, it was aimed that the subjective well-being of adolescents with ID would be compared to adults and adolescents without ID, and adults with ID. The PWI-SCwID was administered to 42 adolescents with ID. They had a mean age of 15.86 years (SD = 1.70) and 52% were female. Participants were recruited from special education schools and dance classes for adolescents with Down syndrome. Thirty-seven participants (88%) validly completed the PWI-SCwID. Of the 17 participants with Down syndrome, who are most likely to have moderate to severe intellectual disability, 76% returned valid questionnaires. Comparison of the current sample with other samples of adolescents and adults without ID found no significant differences in subjective well-being. Adults with ID from another study reported lower happiness with their standard of living than the current sample. The higher completion rate reported in this study is likely due to the implementation of training protocols that taught and assessed the participants' ability to use a Likert-type scale. The high completion rate of participants with Down syndrome suggest that the revised protocols enable the collection of well-being data previously believed to be unattainable. The implication is that evaluating policy and interventions may consider the subjective well-being of a vulnerable group who typically have limited capacity to advocate for themselves. [ABSTRACT FROM AUTHOR]

People with disabilities often feel isolated from their communities, which in turn affects their emotional well-being and their overall quality of life. Access to transportation is a substantial barrier to community participation and an improved quality of life for individuals with disabilities. Transportation voucher programs represent a cost-effective way to provide access to transportation for people with disabilities, but few studies have empirically examined the effectiveness of such programs. The present study examined the perceived benefits of participating in a transportation voucher program in Michigan, a midwestern state in the United States with limited public transportation. Cross-sectional survey data collected from a convenience sample of 73 participants of the transportation voucher program, funded by the state's Developmental Disabilities Council from 2005 to 2008, were analyzed. Participation outcomes were differentiated by age, sex, employment status, and type of disability using multivariate logistic regression analysis. More than two-thirds (70%) of participants reported that their emotional well-being and community participation had improved, and 54% of participants indicated that participation in the voucher program had resulted in better overall quality of life. The type of disability was an important factor in determining the degree of gain experienced, particularly in terms of community participation and overall quality of life. Findings suggest that resources spent on developing voucher programs have the potential to enrich the lives of persons with disabilities and their families. However, future longitudinal research along with a comparison group may be necessary to validate these preliminary findings on the benefits of vouchers. [ABSTRACT FROM AUTHOR]