Search results for ‘Subject term:"learning disabilities"’ Sort:
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Exploring the ethical underpinnings of self-advocacy support for intellectually disabled adults
- Authors:
- CHAPMAN Rohhss, TILLY Liz
- Journal article citation:
- Ethics and Social Welfare, 7(3), 2013, pp.257-271.
- Publisher:
- Taylor and Francis
- Place of publication:
- Abingdon
Self-advocacy organisations support people in a wide range of political activities, alongside providing key social networks. The emergence of formalised self-advocacy for intellectually disabled people marked an important cultural shift. These groups soon became associated with the pursuit of social change and the attainment of rights. The role of the self-advocacy support worker, working together with self-advocates, has been pivotal. However, studies have shown there has been concern over the relationship between self-advocates and those who advise or support them. Both parties are aware of the potential tensions of supporters teaching people skills to take control, to manage their workers, whilst, perhaps inadvertently, assuming a powerful position in the relationship. This interesting paradox hints at ethical complexities inherent in the role. A key challenge facing these support workers is how they can support their employers to run successful organisations, without ‘taking over’. Using material from both Chapman and Tilley's research of self-advocacy organisations in the UK, this article problematises some key ethical issues within the role. (Edited publisher abstract)
Participatory research with men with learning disability: informed consent
- Authors:
- COOK Tina, INGLIS Pamela
- Journal article citation:
- Tizard Learning Disability Review, 17(2), 2012, pp.92-101.
- Publisher:
- Emerald
People with learning disability are increasingly being involved in, and taking control of, research. The purpose of this paper is to add to current understandings of how people with learning disability make informed choices in relation to participation in research. It aims to highlight both the competencies of people with learning disability in relation to participation in research and the impact of their involvement on the quality of that research. The study participants were 7 men with learning disabilities and staff from the medium secure unit where they reside. The study involved a participatory/collaborative approach. Workshops were designed to promote discussion on topics related to research, consent and ethics. Data was collected at the workshops, at pre- and post-workshop interviews, and using diaries. The findings demonstrate that the complexities of research and the implications of participation were poorly understood. Collaborative, recursive approaches are important for developing understanding. In addition, participation in the research approach by people with learning disabilities enabled the generation of new understandings. A set of principles to support informed decision making is provided.
'Care': moral concept or merely an organisational suffix?
- Author:
- CLAPTON J.
- Journal article citation:
- Journal of Intellectual Disability Research, 52(7), July 2008, pp.573-580.
- Publisher:
- Wiley
Over recent decades, a couple of interesting trends have occurred in regard to human services practices in Australia. First, there has been a significant shift from practices that previously have intentionally responded to emerging and continuing human need within communities to practices that are now managed within a context of managerialism and influenced by market forces. Second, in such a changing context, increasingly, organisations have added the suffix 'care' to their organisational name. A conceptual-theoretical analysis is undertaken to explore the characteristics of human services that embrace managerialism. The moral constructions of personhood in regard to people with intellectual disabilities (ID) within this service context are investigated; and the implications of how care is practised are considered. An immoral-amoral binary of personhood within an underpinning neo-liberal context is identified and analysed. Further analysis reveals a more insidious independent–dependent binary for people with an ID linked to a dominating Ethic of Normalcy. This latter binary suggests that care seemingly becomes neither ethically relevant nor legitimate for people with ID in managerialist service contexts. Ethical transformation in regard to care is needed for contemporary human services practice for people with ID. The underpinning Ethic of Normalcy is challenged for an Ethic of Engagement; whereby a deep understanding of care as a moral concept needs to be at the core of practice, rather than merely attached in an organisational name.
A model of substitute decision-making
- Authors:
- CARLSON Glenys, WILSON Jill
- Journal article citation:
- Australian Social Work, 51(3), September 1998, pp.17-23.
- Publisher:
- Taylor and Francis
Substitute decisions are those made on behalf of people who are not able to make decisions for themselves. From an ethical point of view it is important that substitute decision-making involving another person's health and well-being be approached methodically. The decision-making model outlined in this article was developed during a study which investigated substitute menstrual management decision-making for young women who had intellectual disabilities and high support needs. The decision-making literature provided relevant theoretical bases for structuring the components of the model. On the basis of the model, a definition of informed substitute decision-making in proposed.
Concerns regarding the use of the vulnerability concept in research on people with intellectual disability
- Author:
- SNIPSTAD Oyvind Ibrahim Maroy
- Journal article citation:
- British Journal of Learning Disabilities, 50(1), 2022, pp.107-114.
- Publisher:
- Wiley
Background: People with intellectual disability are often defined as a vulnerable group. The feminist philosopher Jackie Scully argues that vulnerability is often associated with qualities such as immaturity, helplessness, victimhood, passivity and so forth. As research is a social activity, the qualities associated with vulnerability affect researchers' decisions about who to include and exclude from their research project as well as influencing their interpretations of the research participants' answers, behaviour and actions. This may result in excluding people with intellectual disability from research or that their ways of being becomes interpreted as mere symptoms of their diagnosis rather than subjective opinions and experiences. Conclusion: By addressing these issues through the work of Norwegian philosopher Hans Skjervheim, this paper contests traditional interpretations of vulnerability and instead argues that vulnerability should be related more specifically to each individual research project and prompt questions such as: How do we protect these particular participants from harm? (Edited publisher abstract)
Developing a code of ethics amongst social workers in supported employment: exploring the socio-ecological model
- Authors:
- SHAPIRA-LISHCHINSKY Orly, BEN-AMRAM Miri
- Journal article citation:
- British Journal of Social Work, 50(6), 2020, pp.1834-1853.
- Publisher:
- Oxford University Press
This study reveals the ethical dilemmas encountered by social workers who mentor workers with intellectual and developmental disabilities that work in the free labour market through supported employment frameworks. The aim of the study is to examine the social workers' ethical dilemmas, while extracting rules of conduct and ethical codes that are unique to supported employment frameworks, through team simulation training. The study included forty-eight social workers who attended nine sessions in the course of one year. The findings, which were analysed using a qualitative methodology, revealed that the dilemmas, rules of ethical conduct and the derived ethical codes ranged from flexible solutions to setting firm boundaries. It emerged that the ethical dilemmas were associated with interactions that take place on all layers of the socio-ecological model. The contribution of the study is in developing an ecological approach to coping with the multidimensional dilemmas that arise in the context of supported employment. The findings will help develop a systemic approach amongst social workers towards coping with the ethical challenges involved in this type of employment. (Edited publisher abstract)
An ethical inquiry of support workers' experiences related to sexuality in the context of intellectual disabilities in Quebec, Canada
- Authors:
- PARISEAU-LEGAULT Pierre, et al
- Journal article citation:
- British Journal of Learning Disabilities, 47(2), 2019, pp.116-125.
- Publisher:
- Wiley
Background: In the last decade, the evolution of support workers' attitudes towards the affective and sexual lives of people with intellectual disabilities has been described as increasingly positive. However, restrictive attitudes targeting affective and sexual life are still documented. Material and methods: This study aimed to explore the ethical implications of support workers' experiences concerning sexuality in the context of intellectual disabilities in everyday practice. This inquiry was guided by the following research questions: (a) In the context of intellectual disabilities, what meanings do service users' sexuality have for support workers? (b) How are those meanings translated into practice? Inspired by critical phenomenology, in‐depth individual interviews with support workers were conducted and analysed. Results: One superordinate theme (Negotiating Interventions) and three themes were identified: “Crossing Organizational Borders,” “A Duty to Act Despite Uncertainty” and “Navigating Competing and Contradictory Discourses.” Conclusion: Support workers' experiences related to sexuality in the context of intellectual disabilities are influenced by how they define their role in a clinical context. This role is influenced by how affective and sexual life is included in practices, local policies and interdisciplinary work. Despite positive attitudinal changes, sexuality is still regarded as a sensitive topic capable of endangering both service users and support workers. (Publisher abstract)
Vignette selection for ethical reflections: a selection procedure for vignettes to investigate staff reflections on the ethical challenges in interaction with people with intellectual disabilities
- Authors:
- ØSTBY May, BJØRKLY Stål
- Journal article citation:
- Ethics and Social Welfare, 5(3), 2011, pp.277-295.
- Publisher:
- Taylor and Francis
- Place of publication:
- Abingdon
Care staff in Norway normally work in the private homes of people with intellectual disabilities. Staff experience ethical challenges daily in their interactions with their clients. The aim of this paper is to introduce a vignette validation procedure for selection of practice-close vignettes that can be used to elicit and explore staff reflections on ethical challenges in their work. Twenty staff participants were recruited from different municipalities in one county of Norway. To develop vignettes with good internal validity, the validation process consisted of: a field study to identify situations to be included as vignettes; a six-step categorization process to select vignettes with good internal validity; transforming the situations into vignettes; including removal of elements that were too leading or constricting; testing the familiarity and relevance of the preliminary sample of vignettes; final selection of four vignettes to be included in the investigation; and a validation of the four vignettes’ familiarity and practical relevance as ethical challenges by the final sample of interviewees. Preliminary experience indicates that the validation procedure enhanced the selection of vignettes to elicit staff perceptions and reflections on daily ethical challenges.
Ashley's case: the ethics of arresting the growth of children with serious disability
- Author:
- STEIN Gary L.
- Journal article citation:
- Journal of Social Work in Disability and Rehabilitation, 9(2-3), April 2010, pp.99-109.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
This article analyses the justifications and ethics of decreasing the growth of children with serious disability. It considers the case of Ashley, a child with profound developmental and cognitive disabilities whose growth was attenuated through high-dose estrogen treatment and surgery. Ashley was diagnosed with static encephalopathy, which left her unable to sit up, ambulate, or use language. She was left with an age of approximately 3 months. The goals of Ashley's parents and physicians were to keep her small, thereby making it easier for her parents to care for her at home. The article presents the perspectives supporting and opposing growth attenuation. In conclusion, the author suggests that community resources and supports, rather than medical strategies, are necessary to address the social challenges of community living.
Challenging behaviour: a human rights-based approach
- Authors:
- BAILEY Sandra, RIDLEY James, GREENHILL Beth
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 4(2), June 2010, pp.20-26.
- Publisher:
- Emerald
When the behaviour of people with intellectual disabilities challenges carers and services, complex and competing human rights issues may emerge. This article explores the human rights issues raised by both people’s challenging behaviour and the attempts of others to respond to those behaviours. The greater the perceived challenge to the practitioner, the more potential there appears to be to lose sight of person-centred practice. It is argued that the human rights-based approach to challenging behaviour and risk provides a model for advancing ethical practice, firstly by offering a unifying model for linking together some of the disparate concepts in existing good practice, and secondly by being based in law. The advantages of taking a human rights-based approach relative to other ethical approaches are explored. The article also describes some key concepts and practice tools (the Keeping Me Safe and Well Screen, the Human Rights Joint Risk Assessment and Management Plan, and the human rights benchmarking tool) currently being piloted within the author’s service to support the integration of a human rights based approach in routine clinical practice.