Quality of life for young adults with severe intellectual disability: mothers’ thoughts and reflections

McIntyre, Laura Lee; Kraemer, Bonnie; Blacher, Jan; Simmerman, Susan

doi:10.1080/13668250410001709485

Cited by 53 publications

(57 citation statements)

References 34 publications

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“…Second, is there enough coordinated and individualized support from adult service agencies such that parents do not have to settle or feel that they are facing such a daunting task? The results of the current study confirm prior findings that the young adults lived and would likely continue to live in their family homes (Chambers, Hughes, & Carter, 2004;Hewitt & Larson, 2007;McIntyre, Kraemer, Blacher, & Simmerman, 2004) and that parents felt unprepared for their roles as advocates in the adult system and were more involved than anticipated (Bianco, Based on these findings and because family involvement and advocacy are related to increased community participation and independence of individuals with IDD (Roush, Fresher-Samways, Stolgitis, Rabbitt, & Cardinal, 2007;Verdonschot, de Witte, Reichrath, Buntinx, & Curfs, 2009a), we offer the following recommendations to families and support providers. First, employment should be a priority for all individuals with IDD as recommended by others (Butterworth, Hall, Smith, Migliore, Winsor, Domin, & Sulewski, 2013;Sulewski, 2010).…”

Section: Discussionsupporting

confidence: 81%

Parent Perceptions of Time Spent Meaningfully by Young Adults With Pervasive Support Needs

Rossetti

Lehr

Lederer³

et al. 2015

Research and Practice for Persons with Severe Disabilities

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This article describes a qualitative study that examined how 23 young adults with pervasive support needs and limited functional communication spent their time and how their parents (n = 23) and direct support professionals (DSPs; n = 2) defined meaningfulness in relation to the young adults' experiences. Data were collected through semi-structured interviews with the parents and DSPs. Findings indicated that most of the young adults spent time in their communities, though typically without friends and not engaged in integrated employment. The participants defined meaningfulness according to three dimensions: community participation, individual indicators, and the nature of activities in the young adults' schedules. They also described both episodic and ongoing challenges that hindered their ability to focus on time spent meaningfully. Finally, their definitions, which reflected basic care needs and community participation goals, raised questions related to the awareness, availability, and utilization of services and supports in the adult developmental disabilities system. Keywords pervasive support needs, post-secondary outcomes, parents, employment Many young adults experience the pressure of trying to figure out what to do after K-12 schooling typically in the areas of post-secondary education, employment, and adult living. The Individuals With Disabilities Education Improvement Act (IDEIA; 2004) emphasized these same goals for young adults with disabilities as part of national policy designed to ensure "equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities." However, research on post-school outcomes for students who received special education services indicates low rates of post-secondary school attendance, employment, and independent living, especially for those with more significant needs

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Section: Discussionsupporting

confidence: 81%

Parent Perceptions of Time Spent Meaningfully by Young Adults With Pervasive Support Needs

Rossetti

Lehr

Lederer³

et al. 2015

Research and Practice for Persons with Severe Disabilities

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“…; McIntyre et al . ; Davies & Beamish ), those authors who sought the views of intellectually disabled young people themselves uncovered a less positive vision, with high levels of interpersonal conflict and violence experienced (Rurangirwa et al . ; Larkin et al .…”

Section: Discussionmentioning

confidence: 99%

What Effect Does Transition Have on Health and Well‐Being in Young People with Intellectual Disabilities? A Systematic Review

Young-Southward

Philo

Cooper

2016

Research Intellect Disabil

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There may be differences between this version and the published version. You are advised to consult the publisher's version if you wish to cite from it. This is the peer-reviewed version of the following article: YoungSouthward, G., Philo, C. and Cooper, S.-A. (2017) MethodPRISMA/MOOSE guidelines were followed. Search terms were defined, electronic searches of six databases were conducted, reference lists and key journals were reviewed and grey literature was searched. Papers were selected based on clear inclusion criteria. Data was extracted from the selected papers, and their quality was systematically reviewed. The review was prospectively registered on PROSPERO: CRD42015016905. Results 15,985 articles were extracted; of these 17 met the inclusion criteria. The results of these articles were mixed but suggested the presence of some health and wellbeing issues in this population during transition to adulthood, including obesity and sexual health issues.3 ConclusionThis review reveals a gap in the literature on transition and health, and points to the need for future work in this area.

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“…It was assumed that information provided by subjects and caregivers accurately reflected their situation and interviewing each separately would not have produced significantly different data. Including caregivers in data collection was supported by the primary role they play in the lives of persons with DD (Grant & Wenger, 1993) and the inextricable relationship between the quality of life of parents (who are the most frequent caregivers) and their children with disabilities (Heiman, 2002;Poston, Turnbull, Park, Mannan, Marquis & Wang, 2003;Redmond, 2004;and McIntyre, Kraemer, Blacher & Simmerman, 2004).…”

Section: Journal Of Social Work In Disability and Rehabilitationmentioning

confidence: 99%

Self- and Caregiver-Reported Experiences of Young Adults with Developmental Disabilities

Roush

Fresher-Samways

Stolgitis³

et al. 2007

Journal of Social Work in Disability & Rehabilitation

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The purpose of this study was to describe the experiences of young adults with developmental disabilities (DD) who were living in community settings with the aid of government-supported services. Six male and 10 female volunteer subjects (mean age = 24 years) were interviewed and the narrative data were analyzed revealing themes in six categories: (1) Home Life, (2) Relationships, (3) Health and Health Care, (4) Personal Growth and Accomplishments, (5) Occupation, and (6) Transportation. Subjects' most positive experiences were associated with integrated, comprehensive and timely services delivered by knowledgeable and sensitive service providers. Strong parental advocacy facilitated these features. Additionally, experiences were most positive when daily activities occurred within the sphere of either family or the disability community, as opposed to the broader community. Research is suggested to further understand the dynamics of integration in the broader community and to devise strategies to successfully facilitate this integration.

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Quality of life for young adults with severe intellectual disability: mothers’ thoughts and reflections

Cited by 53 publications

References 34 publications

Parent Perceptions of Time Spent Meaningfully by Young Adults With Pervasive Support Needs

Parent Perceptions of Time Spent Meaningfully by Young Adults With Pervasive Support Needs

What Effect Does Transition Have on Health and Well‐Being in Young People with Intellectual Disabilities? A Systematic Review

Self- and Caregiver-Reported Experiences of Young Adults with Developmental Disabilities

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