Beyond custodial care: Mediating choice and participation for adults with intellectual disabilities (original) (raw)

Daily Life Participation in a Residential Facility for Adults with Intellectual Disabilities: An Institutional Ethnography

The overall aim of this dissertation was to determine how the daily operations and institutional structures of an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID) coordinate what residents and staff do. The specific aims were to (1) identify and describe the daily operations and institutional practices of the facility; (2) identify and describe the activities of the residents and staff; and (3) identify and describe how the opportunities for residents to choose and participate in meaningful activities were affected by institutional operations and culture. Institutional ethnography was applied as a social theory and methodology. Data were collected over 14 weeks with seven residents with profound ID and eight staff members. Data collection methods included participant observation, ethnographic interviewing, and text work. Conceptual mapping and narrative analysis were employed as iterative and reflexive processes to systematically extract narrative ...

Negotiating Tensions on the Front Line: Circuits of Accountability and Self-governance in Institutional Care of Adults with Intellectual Disability

Work, Employment and Society, 2019

This article explores how circuits of accountability impact front-line service work in an intermediate care facility for individuals with intellectual disability (ICF/IID). Institutional ethnography as a theory and methodology guided the data collection and analysis processes. Participant observation and interviews were completed, and text work was employed to make visible the ways staff enacted what they believed to be their roles and responsibilities. Results indicated the service criteria established by regulatory agencies were interpreted and executed in ways that negatively influenced staff’s moral care to residents and restricted their ability to self-govern and utilize their experiential knowledge. Additionally, the institution’s circuits of accountability reflected ideals of front-line work that were inconsistent with staff’s perception of their responsibilities. These findings have implications for management and implementation of direct care in ICFs/IID and underscore the ...

"Starting to Live a Life": Understanding Full Participation for People With Disabilities After Institutionalization

The American Journal of Occupational Therapy, 2020

Importance: A key objective of the Americans With Disabilities Act of 1990 (ADA) is community integration; yet, nearly 30 yr later, little is known about the participation of people with disabilities who transition from institutions to the community. Objective: To understand how people with disabilities describe full participation after transitioning from an institution to the community and to identify environmental barriers and facilitators to participation during and after this transition. Design: The ADA-Participatory Action Research Consortium (ADA-PARC), a collaboration among researchers, people with disabilities, and community organizations, is implementing a multimethod, participatory action research study of participation among people with disabilities posttransition. This article presents qualitative findings from semistructured interviews collected as part of the larger ADA-PARC project. Setting: ADA-PARC community partners across the United States. Participants: One hundred fifty-three adults with disabilities. Outcomes and Measures: We used a semistructured interview guide to ask participants about their experiences during and after transition to the community. Results: We identified four themes: (1) the process of transition as ongoing rather than a single event, (2) access to everyday occupations as full participation and what fully represents "living a life," (3) environmental barriers to participation, and (4) social identity as participation as the transformative process of moving from the disempowering isolation of the institution to being integrated into the community. Conclusions and Relevance: As people with disabilities transition into community settings, they require ongoing supports to facilitate their full, long-term participation. What This Article Adds: People with disabilities reported that transitioning from institutions to the community was itself not enough to support their full community participation; rather, they viewed transition as an ongoing process, and they needed services and supports to fully participate. Occupational therapy practitioners working in institutional and community settings can partner with local disability advocacy communities to support their clients' sense of identity and self-confidence during and after transition to the community. T he 1999 U.S. Supreme Court decision Olmstead v. L. C. (527 U.S. 581; Olmstead) ruled that unjustified segregation of people with disabilities is unlawful under the Americans With Disabilities Act of 1990 (ADA; Pub. L. 101-336). The court held that people with disabilities have a right to reasonable accommodations to enable them to live in the least restrictive community setting. The decision was a landmark for disability rights because it revealed the potential of the ADA to legislate the full inclusion of people with disabilities into their communities, with equal access to social participation and opportunities (Dinerstein, 2016). The realization of the full potential of the ADA is limited by several factors, including variation in state compliance and enforcement and unequal application of community-based services and supports that enable people with disabilities to Citation:

“No! You can’t have it”: Problematizing choice in institutionalized adults with intellectual disabilities

Journal of Intellectual Disabilities, 2018

Institutionalized adults with profound intellectual disabilities (ID) face significant challenges to having their choice-making cultivated and supported. Based on observational and interview data from an institutional ethnographic study, this article explores how choice-making during mealtimes is acknowledged and problematized by staff. First, we suggest that Foucauldian problematization offers a lens through which to better understand how mealtime intervention plans passed down over time become embodied restrictive practices. Second, we provide examples and analyses of mealtime negotiations between staff and residents. Analyses revealed staff infantilize and misrepresent residents’ choice-making during meals as manipulation; additionally, analyses suggest that past experiences of staff with residents and historical meal plans color how they acknowledge and interpret residents’ choices. Our argument is an attempt to move forward discussions concerning the implementation of quality h...

Autonomy on the horizon: comparing institutional approaches to disability and elder care

Theory and Society, 2021

This article asks how people come to interpret themselves and others as autonomous given their multiple dependencies. We draw on a cross-case comparison of ethnographic studies with two populations for whom autonomy is both central and problematic: elderly patients in post-acute care, and young adults with disabilities in an independent living program. Analyzing the institutional efforts to make their clients "as independent as possible," we find that staff members at each organization formulate autonomy as a temporal project through an ongoing calibration of open futures, ideal pasts, and situational competence. Constantly adjusting and fine-tuning where in time autonomy "really" is, workers arrange present dependence so that the contours of the future remain open for their clients. In other words, they make use of temporal markers to produce recognizable autonomous subjects whose dependencies are momentary. Theorizing this temporal project enables us to see more clearly how all of us engage in the constant business of "doing" autonomy, and to better understand the role of institutions in producing autonomous selves.

An ethnography exploring the limits of dedifferentiation in the lives of adults with intellectual disabilities

Journal of Intellectual & Developmental Disability, 2020

Background: Dedifferentiation refers to the trend of positioning people with intellectual disabilities together with other disabled individuals for political purposes, to act as a counter to differentiated approaches. This article explores the influence of dedifferentiation in professional support settings through the lived experiences of people with intellectual disabilities and their staff. Methods: Ethnographic research, including participant observation and interviews, conducted with an intellectual disability social care provider and an independent community café, both based in an area of England. Results: Tensions exist between dedifferentiation aims and the lived experiences of people with intellectual disabilities, who often struggled to achieve in areas including independent community inclusion and paid employment. Conclusion: Dedifferentiation has disadvantages for people with intellectual disabilities. It can underestimate and mask needs that people experience in relation to their disabilities. Policy and professional support might be improved by (1) recognising these limits and (2) incorporating people's real-world needs into support provision.

Democratic Care and Intellectual Disability: More than Maintenance

Ethics and Social Welfare, 2018

Joan Tronto defines care by three activities: maintaining, continuing, and repairing. These activities give care a maintenance quality, which is problematic given that caring often takes place within contexts of inequality and domination. Empirical research with paid support staff and people with intellectual and developmental disabilities (IDD) illustrate these problems: care practices tend to reinforce the social exclusion of people with IDD, particularly for people with challenging behavior. Yet, support workers' care practices can facilitate a better quality of life for people with IDD. This improved style of support maps onto Tronto's fifth phase of care, caring with, which hinges practices of care on democratic principles of justice, equality, and freedom. As such, democratic care requires activities that Tronto excludes from care, including creativity, disruption, and pleasure. I use empirical research from the field of IDD to show how support workers and people with IDD practice creative, disruptive, and playful care to challenge persistent forms of exclusion, inequality, and stigma.

Countering the “Career of Disability”: From Clinical Institutionalization to the Creation of Opportunities for Biographical Change

Procedia - Social and Behavioral Sciences, 2014

ABSTRACT Starting from the normative references Italian (the Italian State, Lombardia Region) and international (WHO, UN), this paper aims to highlight how a municipal service can take action against students with disabilities by creating opportunities for inclusive education that prescind from the same disability. In fact, the Service does not intervene on a single subject in terms of assistance, but the construction/deconstruction of the role of disability, therefore involves the whole community in implementing actions of shared responsibility. These procedures outline a system of innovative intervention to disability based on the transformation of the social processes that generate the identity of the disabled and the development of skills of the subject rather than on the medicalization of the individual.