In Search of Meaningful Daytimes: Case Studies of Community-Based Nonwork Supports

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As of 2004, more than 114,000 individuals with intellectual/developmental disabilities in the United States were identified as receiving supports for community-based nonwork (CBNW), that is, activities that do not involve paid employment but do take place in the community rather than that in a facility (Institute for Community Inclusion, 2007). Little is known, however, about the nature of CBNW as implemented by provider agencies and experienced by people with intellectual/developmental disabilities. This manuscript reports the findings of case studies of CBNW in two states with well-established CBNW supports. Success of CBNW in meeting goals such as individualization, integration, choice, and independence varied from state to state and from site to site. This variability suggests a need for clearer standards and best practices for CBNW.

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... Based on these findings and because family involvement and advocacy are related to increased community participation and independence of individuals with IDD (Roush et al., 2007;Verdonschot, de Witte, Reichrath, Buntinx, & Curfs, 2009b), 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 et al., 2013;Sulewski, 2010). However, in the absence of full-time, paid, integrated employment, teams should maximize time spent meaningfully through person-centered planning utilizing this study's conceptual framework, which may assist in clarifying the role of CBNW activities. ...
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.
The philosophy of inclusion for people with intellectual and developmental disabilities (IDD) has evolved over the last fifty years. Over time, inclusion research has shifted from a focus on deinstitutionalization to understanding the extent to which individuals with IDD are meaningfully involved in the community and social relationships. Yet, there has been no agreed upon way to measure inclusion. Many different measurement and data collection techniques have been used in the literature. The present study proposes a brief measure of inclusion that can be used with family members and on survey instruments.
Abstract Based on the 2010-2011 National Survey of Community Rehabilitation Providers, findings are presented on people with all disabilities and people with intellectual and developmental disabilities (IDD) who are served in employment and nonwork settings by community rehabilitation providers. Findings suggest little change over the past eight years in participation in integrated employment. Overall, 28% of all individuals and 19% of individuals with IDD were reported to receive individual integrated employment services. The results suggest that 15% of individuals with IDD work in individual integrated jobs for pay. Group supported employment continues to play a smaller but significant role in employment supports, with almost 10% of individuals with IDD participating in enclaves or mobile work crews. Data do reflect a decline in participation in facility-based work for individuals with IDD, from 41% to 27.5% and a concurrent growth in participation in nonwork services to 43% of all purchased services.
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The second in a series exploring the services people with developmental disabilities receive from community rehabilitation providers (CRPs). Despite recent ideological emphasis on work, the majority of CRPs continued to offer non-work programs and a substantial proportion of the people they served were involved in those programs. Overall, the findings raise questions about CRP commitment to community integration.
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As community-based services for adults with developmental disabilities develop, one category remains underexplored: community-based non-work (CBNW). Findings from an ICI survey show that while CBNW is a growing part of the service mix, its definitions and requirements remain fuzzy.
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Support provided by 69 local churches to individuals with disabilities was studied through a mail survey. Results indicate that 56 of the churches were attended by individuals with developmental disabilities, and support was provided by churches in the form of food, transportation, opportunities for service to the church and the community, and social/emotional support. (Author/CR)
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This article presents findings on community-based nonwork (CBNW; activities that do not involve paid employment but take place in the community) from a 2001 survey of state intellectual disabilities/developmental disabilities agency directors. Survey responses indicated that CBNW is a considerable and growing part of the day services mix but that it is loosely defined with respect to requirements, activities, populations served, and goals. Although CBNW has the potential to enhance the lives of people with disabilities, these findings raise some concerns, including how quality can be assured when supports are loosely defined, how CBNW can be provided without taking resources away from supported employment, and whether community connections can be made when people are supported in groups.
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As service professionals strive to become morefocused on the needs and aspirations of people withdisabilities, soliciting information directly from in-dividuals about their perceptions of their lives hasbecome increasingly important (Freedman, 2001;Rapley, 2003; Schalock, 1994; Sigelman, Budd,Spanhel, & Schoenrock, 1981; Sigelman et al.,1980). People with disabilities are taking a largerand more primary role in the planning, evaluation,and delivery of services. Consequently, the natureof research efforts has been evolving from one inwhich investigators treat people with disabilities assubjects to one that includes these ‘‘subjects’’ in thedesign and implementation of the research. Con-ducting such studies requires careful planning onthe part of researchers. In this paper we reflect onthe challenges of surveying people with disabilitiesand discuss possible strategies to address these chal-lenges.Our experience is based upon a face-to-face in-terview study of adults with disabilities conductedover a 2-year period in two cities within a largesouthwestern state. Project Asking Consumers toIndicate Their Own Needs and Strengths (AC-TIONS) was designed to enable researchers to gath-er information about the perceptions of people witha wide range of disabling conditions about their life.The state’s Council on Developmental Disabilities,which funded the study, planned to use this infor-mation in their planning process.Project ACTIONS’ advisory group decidedthat those individuals we recruited should have thecapacity to consent to participation, operationallydefined as individuals who did not have a legalguardian. The recruitment plan included surveyingindividuals with a range of disabling conditions, in-cluding physical/mobility impairments, whethercongenital or the result of trauma; developmentaldisabilities, including cognitive impairments (in themild to moderate range); and other disabling con-ditions. Both males and females were recruited intothis multi-ethnic sample.
When the transition movement began as a federal initiative in 1984, it was conceptualized as “an outcome-oriented process leading to employment.” Although many educators viewed this narrow focus on employment as too constrictive, an alternative framework for conceptualizing transition outcomes has been slow to develop. This article explores a broader framework, quality of life, organized around three topics: (1) theoretical issues that pertain to the definition and conceptualization of quality of life; (2) research findings that provide support for quality of life as an outcome framework for evaluating transition programs and services; and (3) a few suggestions about issues we should address as we move through the 1990s.
The purpose of this analysis is to examine and to compare the conceptual, methodological, and operational implications of the medical and economic perspectives that have formed the bases of the traditional "functional-limitations" paradigm and the sociopolitical definition which is the foundation of the new "minority-group" model for research on disability. Both the medical and economic definitions have relied primarily on clinical methods. Whereas the medical approach has been operationally measured by limits on major life activities, the economic orientation has been measured by restrictions on the amount or kind of work that can be performed. By contrast, the sociopolitical definition, which focuses on the interaction between the individual and the environment, can be empirically assessed by measures of visibility and labeling. Self-identification is also an important index of the relative size and political strength of disabled persons. Because of the significance of new antidiscrimination laws, which appear to be based on the minority-group model, there is a pressing need to grant operational measures of the sociopolitical definition a position of parity in relation to the vast amount of data that have already been accumulated through the use of medical and economic concepts in government and other surveys.
introduction to social networks, interesting the centrality chapter.
"Stephen Van Evera's Guide to Methods makes an important contribution toward improving the use of case studies for theory development and testing in the social sciences. His trenchant and concise views on issues ranging from epistemology to specific research techniques manage to convey not only the methods but the ethos of research. This book is essential reading for social science students at all levels who aspire to conduct rigorous research."-Alexander L. George, Stanford University, and Andrew Bennett, Georgetown University "Van Evera has a keen awareness of the questions that arise in every phase of the political science research project-from initial conception to final presentation. Although others may not agree with all of his specific advice, all will appreciate his user-friendly introduction to what is sometimes seen as an abstract and difficult topic."-Timothy J. McKeown, University of North Carolina, Chapel Hill For the last few years, Stephen Van Evera has greeted new graduate students at MIT with a commonsense introduction to qualitative methods in the social sciences. His helpful hints, always warmly received, grew from a handful of memos to an underground classic primer. That primer has now evolved into a book of how-to information about graduate study, which is essential reading for graduate students and undergraduates in political science, sociology, anthropology, economics, and history-and for their advisers.
This Article provides an Emerging Disability Policy Framework consistent with the "new paradigm" (which consider disability as a natural and normal part of the human experience and focuses on taking effective and meaningful actions to "fix" or modify the natural, constructed, cultural and social environment) that can be used as a lens or guidepost to design, implement, and evaluate generic, as well as disability-specific, public policies and programs to ensure meaningful inclusion of people with disabilities in mainstream society. This guidepost is targeted to the needs of federal, state, and local policymakers, as well as for persons with disabilities, their families, and their advocates. For researchers, the Article provides a benchmark for studying the extent to which generic and disability-specific policies and programs reflect the "new paradigm" and achieve its goals. For service providers, this Article provides a lens for designing, implementing, and evaluating the delivery of services to persons with disabilities. For college and university professors teaching courses that include disability policy, this Article provides a framework for policy analysis.
Little information has been reported on the leisure time physical activity (LTPA) habits of adults with mental retardation. Prevalence of physical inactivity and recommended LTPA of adults with mild to moderate mental retardation who live in community settings was described. Adults with mental retardation (76 men, 74 women) reported their physical activity habits. Overall, men and women who resided in community settings were similarly inactive, with 47% to 51% of individuals participating in little to no LTPA. Forty-two to 47% of them reported participation in moderate to vigorous LTPA five or more times per week. Limitations to quantifying physical activity through questionnaire process is discussed and development and implementation of programs designed to increase physical activity levels recommended.
In this qualitative study the college experience of an individual with Down syndrome was examined. The student audited two academic courses and participated in various nonacademic campus activities. The investigation yielded multiple themes within the following areas of importance: (a) the meaning of going to college, (b) the development and meaning of college friendships, (c) negotiation of the academic program, and (d) enrichment of the lives of those involved. The findings showed benefits to both the student's personal and professional development. The struggles and successes within each area of importance are described and implications for each are discussed.
In this qualitative study we look critically at the opportunity for participation in religious services for people with developmental disabilities from three perspectives: house managers (n = 4), church leaders (n = 6), and people with developmental disabilities residing in group homes (n = 25). Observations were also made at several church services attended by the group home residents. Results suggest that people with developmental disabilities want to go to church and enjoy religious worship. Their full inclusion in activities and developing friendships, however, appears to be quite limited due to the conflicting expectations of house managers and church leaders, the lack of transportation or support staff, and the stereotypical attitudes towards people with developmental disabilities.
The walking activity of men and women with mental retardation residing in community settings was described. Participants were 38 women (M age=.7, SD=9.5) and 65 men (M age=35.9, SD=11.2). They wore pedometers for 7 days. A 2 x 2 factorial ANOVA indicated no significant gender differences in total step counts or between participants with and those without Down syndrome. A post-hoc analysis revealed that participants walked less on Saturday than during the weekdays. Only 21.1% of the women and 21.5% of the men with mental retardation accumulated the recommended 10,000 steps per day.
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