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Journal article

'It's my life' autonomy and people with intellectual disabilities

Authors:
BJORNSDOTTIR Kristin, STEFANSDOTTIR Guorun V., STEFANSDOTTIR Astriour
Journal article citation:
Journal of Intellectual Disabilities, 19(1), 2015, pp.5-21.
Publisher:
Sage
Place of publication:
London

This article discusses autonomy in the lives of adults with intellectual disabilities. The article draws on inclusive research in Iceland with 25 women and 16 men and employs ideas of relational autonomy from the perspectives of the Nordic relational approach to disability. In this article, the authors examine autonomy in relation to private life, that is, homes and daily activities. The article demonstrates how practices have improved with time and seem less paternalistic. However, the article also demonstrates that the assistance people with intellectual disabilities receive in their homes often has institutional qualities, and they are often met with belittling perspectives from staff and family members. Furthermore, many did not have access to important information needed to develop individual autonomy and independence, including making their own choices. The research findings suggest that people with intellectual disabilities can with appropriate support develop individual autonomy and make their own choices. (Edited publisher abstract)

Journal article

Inclusion and healthcare choices: the experiences of adults with learning disabilities

Authors:
FERGUSON Morag, JARRETT Dominic, TERRAS Melody
Journal article citation:
British Journal of Learning Disabilities, 39(1), March 2011, pp.73-83.
Publisher:
Wiley-Blackwell

Those with learning disabilities have fewer decision-making opportunities than the general population. This study investigated the decision-making experiences of two groups of individuals with a learning disability. Group 1 included irregular attenders who had opted out of healthcare appointments for avoidable reasons, and group 2 included regular attenders who had attended all appointments or not attended for unavoidable reasons. Interviews were carried out with 4 people with learning disabilities and/or their 13 primary carers. In addition to these interviews, physiotherapy staff participated in a focus group. Those with learning disabilities described experiences of and opportunities for making everyday decisions but mostly identified others as being responsible for making their health care choices. Overall, the paper concluded that a greater understanding of the health care expectations and experiences of individuals with learning disabilities, and those that support them, is required to enable people with learning disabilities as participants in their own health care decision-making processes.

Journal article

Enhancing capacity to make sexuality-related decisions in people with an intellectual disability

Authors:
DUKES E., McGUIRE B.E.
Journal article citation:
Journal of Intellectual Disability Research, 53(8), August 2009, pp.727-734.
Publisher:
Wiley

An intervention was applied to the area of sexual knowledge in order to determine if capacity for people with learning disabilities to make sexuality-related decisions could be improved. The study adopted a single subject design using multiple baseline method with four adults with a moderate intellectual disability. The intervention consisted of individually tailored sex education. Treatment was offered to each participant twice weekly for a 10-week period on a one-to-one basis. The Sexual Consent and Education Assessment was used for measurement purposes. The SCEA K-Scale (knowledge) and the S-Scale (safety practices) were administered weekly throughout the baseline, treatment and post-treatment phases of the study. Staff concerns were also assessed using the SCEA Inappropriate Sexual Behaviour Scale. All four participants improved their decision-making capacity in all targeted areas as measured by improvements in K-Scale and S-Scale scores. Staff concerns were not increased as indicated by results on the Inappropriate Sexual Behaviour Scale. Six-month follow-up data for three of the participants showed maintenance of scores on the S-Scale and some decay in scores on the K-Scale from post-intervention performance.

Journal article

Choice as an aspect of quality of life for people with intellectual disabilities

Authors:
BROWN Ivan, BROWN Roy I.
Journal article citation:
Journal of Policy and Practice in Intellectual Disabilities, 6(1), March 2009, pp.11-18.
Publisher:
Wiley-Blackwell

Drawing on conceptual considerations and research reports, the authors review and extend what is known about choice, and set out a conceptualization of its two main components: available opportunities and choice-making. The most important characteristics of opportunities are breadth and familiarity, and the most important characteristics of choice making are freedom, initiative, and skill. The authors consider the application of choice to supports and services by discussing numerous practical issues and providing suggestions for application. These are summarized as an overall four-step strategy for moving forward that sets the scene for more specific strategies to be developed and evaluated.

Journal article

Banking on good decisions

Author:
WILLIAMSON Toby
Journal article citation:
Learning Disability Today, November 2008, pp.19-21.
Publisher:
Pavilion
Place of publication:
Hove

More people with learning disabilities could achieve financial independence if banks and their support staff had a clearer idea what capacity really meant. This article briefly looks at the findings of recent studies. It then provides an overview of an easy read guide produced by the Foundation for People with Learning Disabilities on how the Mental Capacity Act 2005 may affect people with learning disabilities as customers of banks and building societies.

Journal article

The Valuing People vision

Author:
-
Journal article citation:
Viewpoint, March 2006, pp.16-19.
Publisher:
Mencap/Gateway

The learning disability white paper, 'Valuing People', was published five years ago this March. This article looks at achievements so far, and six leading figures in learning disability say what they consider to be Valuing People's biggest successes and disappointments.

Journal article

Achieving meaningful discussion for people with profound and multiple learning disabilities

Author:
WILLIAMS Jo
Journal article citation:
Tizard Learning Disability Review, 10(1), February 2005, pp.52-56.
Publisher:
Emerald

Describes changes in the last 40 years spearheaded by people such as Jack Tizard. Summarises and discusses 'Valuing people'. Discusses attitudes and beliefs, communication, time and flexibility, and innovation. Concludes that we need to acknowledge people with learning disability as a heterogeneous group. Participation for those needing most support will break down the barriers and prejudices impeding those needing less. We should fight for a society recognising and celebrating difference, according all the right to meaningful inclusion and participation in decision-making.

Journal article

The Mental Capacity Bill 2004: human rights concerns

Author:
LAING Jacqueline
Journal article citation:
Family Law, 35(2), February 2005, pp.137-142.
Publisher:
Jordan

The Bill represents the culmination of efforts to enact wide-ranging legislation in respect of the mentally incapacitated to encompass management and control not merely of financial affairs but, more controversially, healthcare and medical treatment. Defenders argue it empowers them by allowing them tor make decisions for themselves by way of court appointed deputies and attorneys authorised to decide on their behalf and by legally binding advance statements. It is argued that it goes no further than existing common law and in no way licenses abuse, exploitation or homicide, but since first reading human rights concerns have been articulated. Gives the background to the Bill and lists controversial clauses. Discusses withholding or withdrawing life-sustaining treatment, non-therapeutic research, arbitrary deprivations of liberty, non-voluntary abortion and sterilisation, and other defects. Concludes the concerns identified in recent cases are profound enough to suggest the Bill has been drafted on false assumptions, not assuaged by minor amendments, and that a thorough reconsideration would be appropriate. To press ahead would be to underestimate the potential for human rights violations.

Journal article

Changes to capacity Bill leave too many loopholes

Author:
ASPIS Simone
Journal article citation:
Community Living, 17(4), May 2004, p.5.
Publisher:
Hexagon Publishing

Looks at recent changes made to the Mental Capacity Bill. Looks at the existing weaknesses in the Bill and argues that the concerns many people with learning difficulties had about the Bill dealing with decision making for 'incompetent persons' have not been addressed.

Journal article

Your guide to the Mental Capacity Bill

Author:
GEORGE Mike
Journal article citation:
Care and Health Magazine, 27.7.04, 2004, pp.30-31.
Publisher:
Care and Health

Looks at the main areas of the Mental Capacity Bill, which covers England and Wales.

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