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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.
Using assistive technology and telecare to provide people with learning disabilities with improved opportunities to achieve greater independence
- Author:
- WILKIE Jon
- Journal article citation:
- Journal of Assistive Technologies, 4(3), September 2010, pp.50-53.
- Publisher:
- Emerald
Although standard telecare services have quickly become very successful in many areas, their extension to other groups, including people with learning disabilities, has been delayed by issues such as ethics, and a need for a wider range of technologies. A series of pilot studies by Cheshire Telecare Service aimed to extend telecare and assistive technology provision to people with learning disabilities. The ethical position taken in these pilot studies is discussed, and includes the four basic considerations of autonomy, beneficence, non-maleficence, and justice. The pilot studies demonstrated over £400,000 of cost savings in a year, and enabled improved processes for assessment and prescription to be developed. The article describes four case studies and their successful outcomes. The article concludes that these pilot studies establish a way forward for Cheshire East Council Community Services to roll out improved provision to support many more service users in the future.
Designed for living
- Author:
- GILLEN Sally
- Journal article citation:
- Learning Disability Today, 10(6), July 2010, pp.30-32.
- Publisher:
- Pavilion
- Place of publication:
- Hove
This article describes how assistive technology can promote independence and improve people’s lives as well as save money. Using several vignettes, the article describes different assistive technologies, and how they have been applied to reduce reliance on cares, and maximise the dignity and privacy of people with learning disabilities. Examples presented include video on fridge doors to remind one individual not to eat late at night, and telecare sensors to enable others to live independently of their carers. The article outlines the potential for local authorities to save money using such technology, using Cheshire East Council as a case example. This council invested some £100,000 in assistive technology during 2008/2009, but saved a total of £400,000. The article concludes with an examination of the ethical issues surrounding the technology, such as monitoring and evaluating the technology, and providing protocols should something go wrong. Finally, after exploring the story of James, the author suggests that personalised technology should be embedded as part of a regular support package.
Telecare and learning disability: using telecare effectively in the support of people with learning disabilities
- Editors:
- KERR Brian, et al, (eds.)
- Publisher:
- University of Stirling. Dementia Services Development Centre; Joint Improvement Team
- Publication year:
- 2010
- Pagination:
- 40p.
- Place of publication:
- Stirling
This booklet provides practical guidance on how telecare can contribute to improved outcomes and enhance the support, protection, and quality of life of people with a learning disability. It also considers the importance of telecare in providing support and reassurance to carers. Sections in the booklet include: definitions of telecare and related concepts; the importance of good needs and risk assessment if telecare is to help meet those needs and manage risk; ethical dilemmas and how they can be resolved; how telecare can form part of a package of care and support, and issue particular to carers. Illustrative case studies are include throughout. Suggested content and a timetable for a one-day training programme are included to help trainers design both awareness raising and skill-development programmes. Examples of equipment which might contribute to the safety and quality of life of the telecare user are featured. A reference list and additional resources are included at the end of the book. This is one of four publications funded by the Scottish Government’s National Telecare Development Programme. The books are primarily aimed at assessors, care and support staff and their managers, telecare service managers and development staff.
Applying corporate citizenship theory to the operation of affirmative businesses
- Authors:
- EASTERLY Lisa, MCCALLION Philip
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 7(4), December 2010, pp.261-268.
- Publisher:
- Wiley
To address the need for more employment opportunities for individuals with intellectual disabilities, many vocational rehabilitation agencies have established social ventures called affirmative businesses. Unlike most traditional vocational rehabilitation programs, affirmative businesses compete directly with for-profit businesses producing similar goods or services. Given that nonprofit agencies operating these businesses are supported by taxpayer dollars and private donations, there is increased scrutiny and expectations for legal and ethical behaviour and practices. This article provides an in-depth qualitative examination of two case studies to explore the utility of corporate citizenship theory for affirmative businesses. The themes considered are: being economically responsible; abiding by the law; engaging in ethical and moral management; and ensuring the philanthropy of businesses. The examination highlights how attention to and the application of the theory’s components might improve an affirmative business’s performance, while ill-attention might contribute to business failure. The article discusses how adherence to corporate citizenship played a role in the viability of the first affirmative business, while non-adherence contributed to failure in the second. Suggestions are made for improving the likelihood that affirmative businesses will achieve viability and provide community-based employment for individuals with intellectual disabilities.
Ethical issues of psychotropic medication for people with intellectual disabilities
- Authors:
- RAGHAVAN Raghu, PATEL Pradip
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 4(3), September 2010, pp.34-38.
- Publisher:
- Emerald
This paper details the importance of health professionals considering ethical and legal issues surrounding the prescription of psychotropic medications in the UK to people with learning disabilities. Sections entitled ‘decision-making processes’, ‘prescribing psychotropic medication in intellectual disability – clinical concerns’, ‘accessible information’, ‘covert administration’ and ‘good practice in prescribing psychotropic medication’ cover a wide range of ethical, legal, equality and human rights considerations which need taken into account in each individual case. The authors make mention of the English policy guidelines ‘Valuing People’ and ‘Valuing People Now’ (2001 and 2009), the Mental Capacity (England and Wales, 2005) and Adults with Incapacity (Scotland, 2000) Acts and the 2008 General Medical Council guidance on consent. They list nine guidelines for good practice in prescribing psychotropic drugs, including the use of multi-disciplinary, behaviour analysis, diagnosis and discussion of risks and benefits, especially when a patient in unable to understand and give informed consent, involvement of carers, monitoring and measurement of efficacy and side effects, prompt, controlled withdrawal if necessary, use of lowest, optimal doses and avoidance of frequent dose or drug changes and external auditing of clinical practice.
Personalised technology in practice - how a national charity is using and developing personalised technology to empower people with learning disabilities and to increase their independence
- Author:
- -
- Journal article citation:
- Journal of Assistive Technologies, 4(3), September 2010, pp.64-68.
- Publisher:
- Emerald
This article focuses on how Hft, a national charity for people with learning disabilities, is using and developing personalised technology to empower people with learning disabilities and to increase their independence. It showcases how Hft is using personalised technology in practice and creating awareness of how it can be used to support independence, safety and security. Two individual case studies are provided which illustrate the effective use of technology by people with learning disabilities to increase their independence. The article argues that technology must maintain and enhance quality of life, consistent with the principles of social inclusion, and must also improve efficiencies leading to increased value for money and organisational growth. It highlights the need for investment and development in technology to support the growing number of dependent people and stresses the importance of ethical guidance to ensure that the technology is implemented correctly to enable people with learning disabilities to gain the maximum benefits.
Living 'a life like ours': support workers' accounts of substitute decision-making in residential care homes for adults with intellectual disabilities
- Authors:
- DUNN M. C., CLARE I.C.H., HOLLAND A. J.
- Journal article citation:
- Journal of Intellectual Disability Research, 54(2), February 2010, pp.144-160.
- Publisher:
- Wiley
In England and Wales, the Mental Capacity Act 2005 (MCA) provides a new legal framework to regulate substitute decision-making relating to the health and personal welfare of adults who lack the capacity to make one or more autonomous decisions. Substitute decisions must be made in the 'best interests' of the person lacking capacity. This study explored how statutory legal regulation under the MCA interfaces with the practical and ethical dynamics of care and support in the context of community-based support of adults with intellectual disabilities living in residential care homes in England. The data are drawn from 21 qualitative interviews with support workers in this setting and observations of care practices. In contrast to the narrow legal responsibilities placed upon them, it is argued that support workers interpret substitute decision-making within a broad moral account of their care role, orientating their support towards helping residents to live 'a life like ours'. They described how they draw on their own values and life experiences to shape the substitute decisions they make on behalf of residents. Support workers' accounts revealed discrepancies between the legal regulation of substitute decision-making and the ways that they made sense of their work. It is suggested that such discrepancies have implications both for the implementation of the MCA, and for the role of support workers' values in the conceptualisation and delivery of 'good' care.