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    ABSTRACT: While inclusive research has become an important stream in research with people with intellectual disabilities, there is a tension between the possibly empowering research process and the strength of the research itself to make social change happen. In this paper, we explore the contribution of two inclusive qualitative research studies in Australia and the Republic of Ireland to change in policy and legislation. Both studies used qualitative methods including life stories and focus groups to explore the issue of sexuality and relationships. In both studies, people with intellectual disabilities were actively involved in undertaking the research. Both studies revealed that it was difficult for people with intellectual disabilities to express their sexuality openly or to form adult relationships. Both studies were used by people with intellectual disabilities and their supporters to promote change in which they had a heard voice. This paper is about how people with intellectual disabilities and their supporters can use research which they have done to change policies and laws that affect them. When people with intellectual disabilities are doing research it is called inclusive research.We write about two research studies which were about the sexual lives and relationships of people with intellectual disabilities. One research study was in Australia and one was in the Republic of Ireland.In the Australian study, Living Safer Sexual Lives, 25 people with intellectual disabilities told their life stories and talked about sexuality and relationships.In the Irish study people with intellectual disabilities told life stories and talked with other people with intellectual disabilities about their sexuality and relationships in groups. These are called focus groups.In this paper we explore 4 questions that arose from these studies. Question 1. What impact does doing research have on the people who are involved in it? People with intellectual disabilities in Australia were members of the group that guided the research. They were partners in its design, in deciding what questions should be asked about sexuality and relationships., and thinking about what was found out. They became involved in making films about the study. They learned a lot about research, sexuality and relationships and became members of a government committee to change policy about sexuality and people with disabilities. In Ireland people with intellectual disabilities involved in doing the research talked together about their lives. They then talked with 16 groups of people with intellectual disabilities about their relationships and sexuality. They learned about research and about sexuality and developed plays about their experiences. Question 2. To what extent can inclusive research change policy and practice? In Australia the research led to a change in government policy about sexuality and people with disabilities. The new policy clearly stated people with disabilities had rights to relationships and to a sexual life. It set out rights and responsibilities for people with intellectual disabilities and service providers about relationships and sexuality. It took a long time to get a change in policy and people with intellectual disabilities were part of the getting the change to happen. In Ireland there is a law which says that it is illegal to have some forms of sex with people with intellectual disabilities. From the research people with intellectual disabilities became involved in talking with government about changing this law so that it gives them more rights to a sexual life. The law has not changed yet but the voices of people with intellectual disabilities are now being heard. Question 3 When does research shift into being advocacy? How does this happen? People with intellectual disabilities in both studies became advocates to get change to happen. Partly this was because they had become more 'expert' about sexuality and relationships and the policy and law. They were angry at what they had found out in the research and wanted to get change to happen. Question 4 What added value does including people with intellectual disabilities as researchers give to the research? People with intellectual disabilities had knowledge and experience that made it possible for the research in both Australia and Ireland to happen. They were important in how the research was done and what was done with it after it was finished.
    Journal of Applied Research in Intellectual Disabilities 11/2013;
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    ABSTRACT: This paper reports on data collected in 2011 from a national study about the operation of the best interests principle, a key feature of the Mental Capacity Act (MCA) 2005 for England and Wales. The objective was to provide a picture of current professional practices in best interests decision-making. Four contrasting sample sites were selected, in which National Health Service trusts, social care and other organisations were recruited to participate. A multimethod design was followed, including an online survey with 385 participants, followed by qualitative research through a telephone survey of 68 participants, and face-to-face semi-structured interviews following up 25 best interests cases, with different perspectives on the process in 12 of those cases. The current paper reports only on the qualitative findings. The findings indicate that the MCA was successful in providing a structure for these practitioners, and that the five principles of the MCA were in general adhered to. A variety of perceived risks led to best interests processes being undertaken, and a typical scenario was for a period of hospitalisation or ill health to trigger a best interests decision process about a social care and or a life decision. The study supported previous research in finding the notion of capacity the most difficult aspect of the MCA, and it provides evidence of some specific capacity assessment practices, including problematic ones relating to 'insight'. Best interests decisions were often made by consensus, with practitioners taking on different roles within the process. Meetings played a key part, but other ways of involving people lacking capacity and significant others were also important. It was recommended that the issues highlighted in this research could be clarified further in the Code of Practice, or within risk guidance.
    Health & Social Care in the Community 08/2013;
  • BMJ (online) 01/2013; 347:f4190.
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    ABSTRACT: How do human rights help us with the experiences of people with intellectual disabilities (ID) who face discrimination and barriers in their sexual lives? Men with ID who are gay face a whole range of rights violations when it comes to exercising their sexual identity. How can such a seemingly marginalised group draw on rights based claims for better and equal treatment? This paper explores how the power of men's own stories may usefully challenge prevailing social norms and in turn strengthen human rights claims in this area. It also reflects on the challenges posed to such an agenda by current economic difficulties and changes in the organisation of adult social care in the UK. The paper draws on empirical research with gay men with ID completed in the UK in 2005 and briefly revisits some key messages from the data. It also considers the wider literature on the power and possibilities of human rights, 'intimate stories' and translating human rights into everyday change. Gay men with ID tell powerful stories of love, longing and exclusion. Such stories have the capacity to transform wider social attitudes and in turn strengthen the rights claims of this marginalised groups. There are question marks about the possibility of such change in a time of austerity and the broader move in the UK's welfare state from the collective to the individual consumer of services. However, the telling of men's 'intimate stories' creates an almost unassailable challenge to current discriminatory practices and norms.
    Journal of Intellectual Disability Research 12/2012;
  • Parents with Intellectual Disabilities: Past, Present and Futures, 03/2010: pages 225 - 240; , ISBN: 9780470660393
  • Parents with Intellectual Disabilities: Past, Present and Futures, 03/2010: pages 155 - 169; , ISBN: 9780470660393
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    ABSTRACT: To be empowering, the research must be designed with a group of people who have decided to obtain power, and then must be conducted so that the group learns how to do the research as well as decides what research needs to be conducted. (Sample, 1996: 320)This article describes a project in which Bristol Self Advocacy Group members visited similar groups in their area, and carried out group interviews based on their own research questions. Some academic researchers appear to question the genuine research involvement of people with learning difficulties and I attempt to answer some of these views. The group has already published, in their own names, their views about the process of doing research and their findings (Palmer & Turner, 1998; Palmer et al., in press), and have produced a booklet aimed at other self advocacy groups (Finding Out, 1999). However, in view of the importance of such a group expressing their own viewpoint directly, a word of explanation is in order about the authorship of the present article. It arose originally from my attempts to summarise for the Research Group some of the literature mentioned in this paper, which resulted in an ‘alternative paragraph’ article, in which I wrote one point, and one group member responded in the next paragraph. That project is still in progress, but in the meantime, the group members wanted me to write the present article. I include their own words and writings at several points, but this remains essentially my account of what has happened.
    British Journal of Learning Disabilities 08/2009; 27(2):48 - 51.
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    ABSTRACT: The present paper describes conflicts of interest in families which include someone with intellectual disabilities. Data were taken from a study concerned with the 1995 Carers Act. The research examined the experiences and views of 51 families who had some kind of assessment by a social services department. Cases were analysed where it was found that carers, the people for whom they cared and the assessors did not agree about such conflicts. Assessors sometimes stereotyped families and spoke of conflicts of interest when the situation was more complex. In particular, the real conflict was often between the whole family and an inadequate service system that did not offer enough support or choices to the individual. Conflicts which had occurred were related to three major motives driving carers: (1) the need for a break from caring; (2) the need to speak for their disabled relative; and (3) their concern for standards of behaviour. The present authors report on how these situations were handled by assessors and conclude with some recommendations for good carer assessments which will help to resolve conflicts of interest. A greater degree of informed choice for individuals with intellectual disabilities will in itself resolve many potential conflicts of interest.
    Journal of Applied Research in Intellectual Disabilities 09/2008; 14(1):30 - 46.
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    ABSTRACT: The health care needs of people with learning difficulties living in the community are in danger of being ignored. Discussion of such needs is inhibited by a fear of ‘remedicalization’, that is, returning to a domination of a medical model of health in the lives of people with learning difficulties. In a new synthesis of the literature, this paper reviews evidence that health care needs are not being met. It considers the potential for a more effective Primary Health Care (PHC) service through better interprofessional collaboration between Primary Health Care Teams (PHCTs) and Community Learning Difficulty Teams (CLDTs). The meaning of collaboration, in theory and practice, is explored, and the reasons it can be difficult to achieve are discussed. Finally, ways in which improvements in PHC for people with learning difficulties can be attained are suggested.
    Health & Social Care in the Community 06/2007; 2(1):11 - 17.
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    ABSTRACT: Background Previous research, and official guidance, has suggested that planning for the transition between children’s and adults’ services is failing young people with intellectual disabilities and their families in the UK. Youngsters placed away from home in residential schools or colleges are likely to be at even greater risk of poor transition planning and outcomes, yet there is little understanding of what factors parents consider contribute to a smoother transition and what a satisfactory outcome would be.Method The parents of 15 young people from five areas of the UK were interviewed about what they thought contributed to a satisfactory pathway for their son or daughter from an out-of-area residential school or college on to the next phase of their life.Results Parents identified four main process issues: being well-connected with other parents or with key professionals; being proactive; having sufficient information; and good forward planning. Most considered a good outcome to be if the young person was happy, fulfilled and stimulated.Conclusions Parents were clear about what they thought helped, and there was little disagreement between their views. While some of these factors have been previously identified regarding the transition of disabled youngsters, they raise some unique issues for families with a youngster educated in an out-of-area residential school or college.
    Journal of Intellectual Disability Research 02/2007; 51(7):489 - 496.
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