Article

Quality of life of adults with mental retardation/developmental disabilities who live with family

Waisman Center and School of Social Work, University of Wisconsin, 1500 Highland Avenue, Madison, WI 53705, USA.
Mental Retardation and Developmental Disabilities Research Reviews (Impact Factor: 3.8). 05/2001; 7(2):105-14. DOI: 10.1002/mrdd.1015
Source: PubMed

ABSTRACT In this paper, we review the literature related to the quality of life of adults with mental retardation/developmental disabilities (MR/DD) who live at home with their families. We examine the nature of the relationships between adults with MR/DD and their parents and siblings, the social worlds of adults with MR/DD, age-related functional and health issues that affect their quality of life, the range of services and supports provided to them, and familial efforts to plan for their continued well-being when parental care is no longer viable. Individual characteristics associated with these dimensions and/or more compromised quality of life profiles are identified. The paper concludes with recommendations for expanded research on the quality of life of adults with MR/DD who live in the parental home, a topic which has received markedly less attention than the quality of life of adults who live in publicly supported residential settings. MRDD Research Reviews 7:105-114, 2001.

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    • "In many countries there has been an increasing policy focus on the right of adults with intellectual disability (ID) to live independently in the community and their right to choose with whom and where to live (Department of Health, 2001; United Nations, 2006; Welsh Assembly Government, 2007). In practice, even though the age for leaving home for the general population has increased as a result of prolonged economic difficulties impacting on cultural norms (Aassve, Arpino, & Billari, 2013; Cobb-Clark, 2008; Mitchell, 2000), adults with IDs are still more likely to remain in their family homes well into middle age, with increasingly elderly parents (Bibby, 2012; Bowey & McGlaughlin, 2005; 2007; Cuskelly, 2006; Dillenburger & McKerr, 2010; Heller, 2008; Heller, Caldwell, & Factor, 2007; Seltzer & Krauss, 2001; Shaw, Cartwright, & Graig, 2011; Taggart, Truesdale-Kennedy, Ryan, & McConkey, 2012). A lack of available community housing has been put forward as one of the reasons contributing to this continued reliance on living with their family (Department of Health, 2011; Mansell, Beadle-Brown, Skidmore, Whelton, & Hutchinson, 2006). "
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    ABSTRACT: Research exploring the experiences of families during the process of seeking out-of-home accommodation for an adult son or daughter with intellectual disability is scarce. A study was undertaken to examine this process. Nine families currently seeking out-of-home accommodation for their adult son or daughter were interviewed and interview data were analyzed using thematic analysis. Two main themes were identified: (1) reasons for seeking housing and (2) experiences of seeking housing. Parents' aging and increased health problems along with the offspring's wish for greater independence were the main reasons for seeking out-of home accommodation. Experiences of looking for a house were not straightforward in that parents often wanted to plan ahead but were prevented from doing so as the housing system prioritizes “housing crises.” Findings showed that families experienced seeking housing as stressful and frustrating and would like to see social care and housing professionals acknowledge them as collaborative partners in the process. The authors conclude there also needs to be greater clarity of expectation of the duration of finding suitable accommodation, a process that needs to be started early in a young adult's life.
    Journal of Policy and Practice in Intellectual Disabilities 04/2015; 12(1). DOI:10.1111/jppi.12106 · 0.97 Impact Factor
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    • "In many countries there has been an increasing policy focus on the right of adults with intellectual disability (ID) to live independently in the community and their right to choose with whom and where to live (Department of Health, 2001; United Nations, 2006; Welsh Assembly Government, 2007). In practice, even though the age for leaving home for the general population has increased as a result of prolonged economic difficulties impacting on cultural norms (Aassve, Arpino, & Billari, 2013; Cobb-Clark, 2008; Mitchell, 2000), adults with IDs are still more likely to remain in their family homes well into middle age, with increasingly elderly parents (Bibby, 2012; Bowey & McGlaughlin, 2005; 2007; Cuskelly, 2006; Dillenburger & McKerr, 2010; Heller, 2008; Heller, Caldwell, & Factor, 2007; Seltzer & Krauss, 2001; Shaw, Cartwright, & Graig, 2011; Taggart, Truesdale-Kennedy, Ryan, & McConkey, 2012). A lack of available community housing has been put forward as one of the reasons contributing to this continued reliance on living with their family (Department of Health, 2011; Mansell, Beadle-Brown, Skidmore, Whelton, & Hutchinson, 2006). "
    [Show abstract] [Hide abstract]
    ABSTRACT: Research exploring the experiences of families during the process of seeking out-of-home accommodation for an adult son or daughter with intellectual disability is scarce. A study was undertaken to examine this process. Nine families currently seeking out-of-home accommodation for their adult son or daughter were interviewed and interview data were analyzed using thematic analysis. Two main themes were identified: (1) reasons for seeking housing and (2) experiences of seeking housing. Parents’ aging and increased health problems along with the offspring’s wish for greater independence were the main reasons for seeking out-of home accommodation. Experiences of looking for a house were not straightforward in that parents often wanted to plan ahead but were prevented from doing so as the housing system prioritizes “housing crises.” Findings showed that families experienced seeking housing as stressful and frustrating and would like to see social care and housing professionals acknowledge them as collaborative partners in the process. The authors conclude there also needs to be greater clarity of expectation of the duration of finding suitable accommodation, a process that needs to be started early in a young adult’s life.
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    • "Adults with intellectual disability and Down syndrome with more conflictual relationships were more likely to experience recurrent transitions . These findings are consistent with the notion that family relationships continue to influence the well-being of people with intellectual disability living outside the home (Alborz, 2003; Seltzer et al., 2001). Conflict may reduce the family's level of involvement in the adult's life in the community, which has been found to benefit adjustment to new residential settings (Schalock & Lilley, 1986). "
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    ABSTRACT: The present study addresses critical gaps in the literature by examining residential transitions among 303 adults with intellectual disability (ID) over 10 years (Part 1) and 75 adults with Down syndrome over 20 years (Part 2). All adults lived at home at the start of the study, but many moved to a variety of settings. Several characteristics of the adults with ID differed across settings, most notably adaptive behavior and the number of residential transitions, whereas characteristics such as age, type of disability, and behavior problems were less predictive of residential placements. The number of moves over the course of the study varied widely, with critical links to earlier family dynamics, social relationships, and health and adaptive behavior.
    American Journal on Intellectual and Developmental Disabilities 11/2014; 119(6):496-515. DOI:10.1352/1944-7558-119.6.496 · 2.08 Impact Factor
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