Jennifer Clegg

Severe intellectual disability and transition to adulthood

Institutional and psychological aspects of transition were explored with parents and staff involved with five young adults with severe intellectual disability whose challenging behaviour diminished after they made the transition, and five whose challenging behaviour remained high. They were selected from a previously surveyed cohort. Grounded theory analysis of interviews suggested little connection between the perspectives of parents and staff. The impact these differences have on communication about challenging behaviour was explored, and recommendations for service changes are made.

Questioning the answer: questioning style, choice and self‐determination in interactions with young people with intellectual disabilities*

For young people with intellectual disabilities (ID), the transition from childrens to adult services has long been recognised as a challenging move. One of the aims of the White Paper Valuing People (2001) was to address some of the problems associated with this transition. This paper reports on data from a project which examines the impact of these service changes, and the ways in which transition is negotiated by carers, professionals and users. It presents a conversation analysis of eight tape-recorded formal review meetings at which transition to adult services is discussed. It takes as its starting point the existing interactional work on ID and the way in which this demonstrates the effects of the local and contextual specifics of particular kinds of interaction on the eventual outcomes (e.g. Rapley 2004, Antaki 2001, Maynard and Marlaire 1992). We show that an attempt to allow self-determination in the context of transitions can paradoxically result in undermining user choice and control. We also argue that, while a rule-based approach to practice may offer moral clarity for professionals, it can result in interactional and practical difficulties which cannot be easily reconciled.

Questioning the answer: questioning style, choice and self-determination in interactions with young people with intellectual disabilities.

For young people with intellectual disabilities (ID), the transition from childrens to adult services has long been recognised as a challenging move. One of the aims of the White Paper Valuing People (2001) was to address some of the problems associated with this transition. This paper reports on data from a project which examines the impact of these service changes, and the ways in which transition is negotiated by carers, professionals and users. It presents a conversation analysis of eight tape-recorded formal review meetings at which transition to adult services is discussed. It takes as its starting point the existing interactional work on ID and the way in which this demonstrates the effects of the local and contextual specifics of particular kinds of interaction on the eventual outcomes (e.g. Rapley 2004, Antaki 2001, Maynard and Marlaire 1992). We show that an attempt to allow self-determination in the context of transitions can paradoxically result in undermining user choice and control. We also argue that, while a rule-based approach to practice may offer moral clarity for professionals, it can result in interactional and practical difficulties which cannot be easily reconciled.

‘Just Being Selfish for My Own Sake …’: Balancing the Views of Young Adults with Intellectual Disabilities and Their Carers in Transition Planning:

In contrast to other forms of family caregiving, becoming the parent or carer of a child with an intellectual disability (ID) implies an ongoing responsibility beyond the attainment of chronological adulthood (Meyers et al., 1985; Todd and Shearn, 1996). At the same time, a discourse of self-determination pervades policy around transition to adult services in ID in England (Valuing People, 2001). In this paper we present a subset of data from a project which aimed to examine how the process of transition from child to adult services in ID is managed. Using data from 8 tape-recorded meetings in which transitions were planned and discussed, we examine what happens when the views of the parent/carer and the young adult are in apparent conflict. Drawing on the growing body of interactional work in the field (eg Rapley, 2004; Finlay, Antaki and Walton, 2008), we use conversation analysis to examine how professionals manage and negotiate this conflict and how some points of view or courses of action ultimately prevail over others. While the discourse of self-determination may prevail in English policy terms, we show how the fact that parents or carers ultimately have a key role in enabling the choices of the young person has a significant impact on these interactions.

Death, Disability, and Dogma

Mourning exists at the nexus between individual experience, professional discourses, research, and culture, making it a complex issue for health services that has shown vibrant change in recent years. By contrast, bereavement discourse in intellectual disability is suffused by dogmatic assertions about correct intervention: we describe four vignettes to illustrate bereavement issues in intellectual disability. Suggestions concerning issues and management are made, but the article focuses primarily on the conceptual issues that underpin clinical intervention. The analysis shows how challenges to the meaning of the disabled life, and to the understandings carers and staff draw on, tend to be resisted. We hypothesize this is most likely to surround issues that evoke cultural uncertainty, such as bereavement. The thesis is that the field of intellectual disability tends to be isolationist because meaning is difficult to create and easily dissolved, especially when addressing culturally contested topics. Dialogue with other disciplines is necessary to stop the field from atrophying, but needs to be carried out in ways that enable carers and clinicians to continue providing the support that people with intellectual disability require.

Interactions between adults with profound intellectual disability and staff

Two main studies of interaction between adults with intellectual disability and staff are reported. The first varied five interactive strategies with nine clients. Results showed that increased positive behaviour from clients was associated with staff talking with them and using social routines. No such increase was observed when staff made their responses contingent on clients, a finding which was supported by the second study carried out with 16 staff-client pairs. In this second study no correlations were found between behaviour during interaction and developmental age.

Ethics and intellectual disability.

A shift in accepted practice regarding sharing research led one editor to discuss adopting a legal rather than a moral stance to enforce ethical standards. Familiar ethical concerns regarding consent and balancing individual rights against those of others are considered, alongside lacunae in the field, by drawing on virtue ethics. Reappraisals of quality of life, person-centered planning and normalization are discussed, concluding that developing ethical relationships with people who have intellectual disability takes precedence over client competency.

Conceptual issues in neurodevelopmental disorders: Lives out of synch

Purpose of review Current revision of the two major psychiatric classification systems has elicited particular comment on neurodevelopmental disorders, which have seen increased provision of specialist clinical services, user group activity, fictional and biographical accounts, and research. Philosophical scrutiny of autism research and literature provides an additional perspective. Recent findings Neurodevelopmental disorders show considerable overlap neuropsychologically, physiologically and genetically. They overlap diagnostically with schizophrenia, personality disorders, anxiety and depression. Of the two main diagnostic groups, there is more evidence of change with maturation in autism spectrum disorder than attention-deficit hyperactivity disorder. Interventions should combine cognitive, affective and embodied aspects of these disorders, and encompass the individual and their social environment. There is considerable evidence of the toll that caring for people with neurodevelopmental disorders exerts on parents. Summary Neurodevelopmental disorders are multifaceted: research addressed to connection rather than further Balkanization is more likely to be fruitful. Clinicians should consider which facets are displayed symptomatically to enable people to grow through rather than surrender to their impairments. Social scaffolding optimizes functional well being. Future research should take into account the tensions in the relationship between research and user groups, and examine the experiences of adults and of the spouses and partners of those affected.

From autonomy to relationships: productive engagement with uncertainty

This paper argues that we are at a point of change in ID services, that new ideas and different frames of reference are required to take services forward in the 21st century. We describe how contemporary thinking in architecture, philosophy and organisational theory can assist in generating service principles for specialist services that allow us to better address the continuing isolation that is the experience of many people with ID, and the moral judgements that can limit service possibilities. We do not seek to offer a rigid blueprint for any particular service but one that allows for agency from its participants and relationships between them.

The analysis of talk sessions between staff and adults with profound intellectual disability

The interactions between adults with profound intellectual disability and staff are described, during sessions when the clients staff member talks with them. Information about 20 staff-client pairs from three different settings is reported. Results showed that, in relatively ideal conditions, clients responded positively during approximately one third of session time; that staff were very responsive to changes in client behaviour; and that clients were most likely to respond negatively to changes in staff behaviour, if they responded at all. No evidence of turn-taking between the interactors was found.