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Do service users with intellectual disabilities want to be involved in the risk management process? A thematic analysis
- Authors:
- KILCOMMONS Aoiffe M., WITHERS Paul, MORENO-LOPEZ Águeda
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 25(5), September 2012, pp.433-444.
- Publisher:
- Wiley
Giving people with intellectual disabilities (ID) the right to make choices requires consideration of their ability to assess the implications and associated risks. People with ID are more likely to find it difficult to identify and assess risk adequately, and may also have had less opportunity to learn from past experiences. The aim of this study was to investigate ID service users’ awareness and understanding of risk management (RM). The participants were 13 people in a residential ID service who were reviewed under the RM process. Thematic analysis explored participants’ knowledge and understanding of risk management to establish their ability to make informed choice. Two main meta-themes (lack of awareness about RM, and awareness about RM) and 4 meta-themes (extent of RM awareness, locus of control, compliance, and empowerment) emerged. Nine participants demonstrated some knowledge and awareness of RM and wanted to contribute to the RM process. The findings indicate that the majority of the service users in this sample had some awareness of the purpose of RM and could make partially informed decisions about whether they would like to be involved in the RM process. The findings highlight the need for professionals to actively attempt to involve ID service users in the management of their own risk.
Enabling self-advocacy: working hand-in-hand with people with learning disabilities
- Author:
- CALLUS Anne-Marie
- Journal article citation:
- Learning Disability Today, June 2012, pp.22-24.
- Publisher:
- Pavilion
- Place of publication:
- Hove
The responses of people with learning disabilities clearly show how important it is to take their views into account. Yet, it is often the views of professionals that are listened to. This leads to a propensity for interactions with people with learning disabilities to be based primarily on a consideration of their impairments, rather than from a consideration of their wishes, aspirations or perceptions. This article suggests that to make self-advocacy truly enabling requires an understanding of how the term ‘learning disability’ is understood. It discusses the notion of ‘normal’, and how learning disabilities imply ‘not normal’ – which can have deleterious effects on the lives of those with learning disabilities, including social rejection, a lack of control over their own lives, and a lack of opportunity.
Home is where the heart is
- Author:
- POWELL James
- Journal article citation:
- Learning Disability Today, December 2012, pp.28-29.
- Publisher:
- Pavilion
- Place of publication:
- Hove
This article focuses on ‘John’, who had spent all his adult life in hospitals and care homes. But thanks to the active support approach, he has been able to move into his own flat. This move was the culmination of 13 years since he moved out of hospital and began to be supported in the community by learning disability support provider Avenues Group. Active support is an approach which Avenues has implemented across its organisation that aims to increase choice, promote independence, and reduce challenging behaviour in people with learning disabilities. Active support is a way of supporting people to take part in meaningful, everyday activities, regardless of their level of disability, where staff provide just enough support for people to take part in everyday tasks.
Enabling self-determination for older workers with intellectual disabilities in supported employment in Australia
- Authors:
- MCDERMOTT Shannon, EDWARDS Robyn
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 25(5), September 2012, pp.423-432.
- Publisher:
- Wiley
Promoting self-determination for people with disability is recognised to be an essential element of disability service provision. The aim of this qualitative study was to understand the extent to which older people with intellectual disability working in supported employment can make self-determined choices about retirement. The study aimed to explore the views of older people with disability and service providers to understand the elements that impact on people’s decision to retire. A total of 76 people participated in semi-structured interviews, including 33 older people with intellectual disability working in supported employment, 10 people who had retired and 30 service providers. The findings showed that service providers strongly supported the right of people to retire. However, people with disability almost never reported the ability to make self-determined choices about retirement. Barriers to self-determination included an association between retirement, poor health and meaningless activities, which was perpetuated through structural service gaps. To address this requires more flexible services, better information about retirement, exposure to real experiences and assistance to express preferences and participate in problem solving throughout the lifespan.
Intellectual disability, consumerism and identity: to have and have not?
- Authors:
- McCLIMENS Alex, HYDE Martin
- Journal article citation:
- Journal of Intellectual Disabilities, 16(2), June 2012, pp.135-144.
- Publisher:
- Sage
- Place of publication:
- London
This article examines consumerism in the UK and its relevance to people with intellectual disabilities. It explores theories on shopping and consumption and contrasts this with research evidence as it applies to the lives of people with intellectual disability. The arguments presented are then transferred to the health and social care sector, and considers whether an economic model which has been exposed as divisive and exclusionary should be used in the administration of social security benefits of the kind accessed by people with a range of disabilities. The article concludes that the advance of marketisation within health and social care may benefit those who are financially able but for those who are economically disadvantaged the choices offered are much more limited.
How we like to live when we have the chance
- Authors:
- DEGUARA Marthese, et al
- Journal article citation:
- British Journal of Learning Disabilities, 40(2), June 2012, pp.123-127.
- Publisher:
- Wiley
This article explores the views of people with learning disabilities on how they would like to live. It was written by a group called the Consultative Committee of Persons with Intellectual Disability, based in Malta, set up in 2007, to favour the rights of people with such disabilities. The article examines two aspects: ‘where we would like to live’ and ‘going out in the community’. It highlights the different opinions of people with intellectual disability about these subjects, and suggests that the fact that different people have different opinions illustrates why it is important that service providers ascertain the views of the group. The article concludes by noting that people with learning disabilities need help in their lives and more accessibility so that they can do what we would like to do.
Choice and control: the right to independent living: experiences of persons with intellectual disabilities and persons with mental health problems in nine EU member states
- Author:
- EUROPEAN UNION AGENCY FOR FUNDAMENTAL RIGHTS
- Publisher:
- Publications Office of the European Union
- Publication year:
- 2012
- Pagination:
- 84p.
- Place of publication:
- Luxembourg
Article 19 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) sets out the right to live independently and be included in the community. The aim of this report is to examine how persons with intellectual disabilities and persons with mental health problems in 9 EU Member States experience autonomy, inclusion and participation in their day-to-day lives. It also provides some examples of promising practices. The report draws on the findings of interview-based research (one-to-one and focus groups interviews) with persons with mental health problems and persons with intellectual disabilities carried out between November 2010 and July 2011 in Bulgaria, France, Germany, Greece, Hungary, Latvia, Romania, Sweden and the United Kingdom. The results show that, although much has been done, more efforts are needed to ensure that persons with mental health problems and persons with intellectual disabilities have more choice and control over their lives and are included in the community on an equal basis with others. Most efforts to date have focused on deinstitutionalisation, but to achieve true independent living they should be accompanied by a range of social policy reforms in the areas of education, healthcare, employment, culture and support services.
Parents' accounts: factors considered when deciding how far to involve their son/daughter with learning disabilities in choice-making
- Author:
- MITCHELL Wendy
- Journal article citation:
- Children and Youth Services Review, 34(8), August 2012, pp.1560-1569.
- Publisher:
- Elsevier
This study investigated factors considered by parents of young people with learning disabilities when deciding their own and their child's role in a range of significant choices about their child's life. Items considered included health, social care and education. Participants included 14 parents recruited from 11 families participating in a longitudinal qualitative study based in England. Parents' accounts demonstrated a continuum of parental involvement ranging from young people being unaware a choice was taking place to young people being fully involved in choice-making. Parents did not always adopt the same approach to choice-making; different approaches to their own and their son/daughter's level of involvement emerged when parents discussed different choices. Although young people's level of understanding was considered, it was not always the most important factor – these factors included the parents' views on the nature of the choice, protecting their child, parents' personal attitudes/beliefs and confidence in practitioner knowledge. Implications for practitioners working with families of young people with learning disabilities are discussed.
Choosing staff members reduces time in mechanical restraint due to self-injurious behaviour and requesting restraint
- Authors:
- JENSEN Craig C., et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 25(3), May 2012, pp.282-287.
- Publisher:
- Wiley
This brief report describes an attempt to reduce self-injurious behaviour and associated mechanical restraint of a women who had a history of biting herself to the point of causing nerve damage. The use mechanical restraints to protect her from dangerous self-injury was decreased by the client choosing the staff person who would work with her. The client was a 28-year-old woman diagnosed with autism, bipolar disorder, static cerebral encephalopathy, moderate intellectual disabilities, hypotonia and musculoskeletal deformities. Mechanical restraints were applied when she bit, tried to bite herself or asked for them. When she was allowed to choose staff members, the use of mechanical restraint decreased. The authors conclude that reducing the time spent in mechanical restraint by giving the client a choice of staff members who would work with her demonstrates that such a choice may be an establishing operation. The value of cumulative records and scatterplots to evaluate changes in the occurrence of self-injurious behaviour and associated mechanical restraint is demonstrated as are the advantages of using alternating treatment designs to assess the effectiveness of treatment conditions for someone who exhibits long-term cyclic behaviour.
Be bold: developing the market for the small numbers of people who have very complex needs
- Author:
- CARRIER Jane
- Publisher:
- Think Local Act Personal
- Publication year:
- 2012
- Pagination:
- 28p.
- Place of publication:
- London
In the context of the Department of Health Developing Care Markets for Quality and Choice programme, this document aims to help adult social care commissioners and their health partners, providers and service users and families to work together to develop local, individualised services that increase choice and control. It is based on discussions with stakeholders including national organisations, commissioners, providers and service users and their families, and a review of existing guidance and other work on market development. It focuses in particular on people with learning disability but is intended to be applicable to any groups of people with particularly complex needs. It discusses what market facilitation and development means and the barriers to development of local services. It proposes potential solutions, covering leadership and vision, personalisation and person-centred planning, planned approaches to commissioning based on good intelligence, provider flexibility and responsiveness, partnerships, understanding the whole system, and the right people. It includes examples of interesting practice, signposts to tools and resources, and a checklist for commissioners and providers to help local areas to assess where they are and highlight areas where they need to act.