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Intellectual Disabilities

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The application of systemic ideas and principles in working with people with intellectual disabilities, their families and their service systems, has grown over the last decade in the UK. This book, for the first time, brings together the writings of a group of practitioners who have been using this approach in their clinical practice. It is hoped it will inspire others to try out different ways of working with people with intellectual disabilities and their wider systems, so that they can have the choice of a wide range of therapeutic approaches. It is also hoped that systemic practitioners who are unfamiliar with this client group might give consideration to extend their practice to also work with people with intellectual disabilities.

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10 Chapters

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1 Working systemically with intellectual disability: why not?

ePub

Glenda Fredman

I t is the start of the 1970s. I am an undergraduate student spending a few days at an institution accommodating people called ‘mentally retarded’. To occupy me, the institution staff have suggested I take David off for the day and teach him to tie his shoelaces. David’s slipper-type footwear does not have laces. He tells me these are his only shoes. Intent on performing the task set for me, I find us some string and prepare to teach David to tie a bow!

First I identify appropriate rewards for David. I learn from David that he likes to eat apples and cheese. Guided by the principles of behaviourism, I proceed to break down ‘bow-tying’ into small steps or sub-skills. Then, rewarding David with small pieces of apple and cheese for successive approximations of the sub-skills of bow tying, through shaping and chaining, I ‘train’ him to tie a bow. David seems very content to pass the day with me in this manner. The institution staff, on the other hand, appear unsettled that we are still in each other’s company when I escort David to lunch and then collect him again an hour and a half later. They seem stunned when, at the end of the day, David and I seek out their audience to demonstrate his bow-tying. I get a grade A from the university for my paper entitled ‘Training a Mentally Retarded Man Using Behavioural Methods’.

 

2 The use of the systemic approach to adults with intellectual disabilities and their families: historical overview and current research

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Sandra Baum

Interest in applying the systemic approach through the methods and techniques of family therapy with adults with intellectual disabilities and their families has grown in the last ten years. This chapter examines what this approach has to offer. The chapter begins by defining the term ‘intellectual disabilities’, documenting the evolution of this definition over time within the context of changing service provision. It then describes the models of the development of psychological services for people with intellectual disabilities within this context, highlighting the individualized focus of such services. A review is presented of the clinical and research literature concerning families where a member has intellectual disabilities, looking in turn at stress, coping, siblings, life-cycle transitions, loss, and parental patterns. Although much of the research described is not explicitly systemic in its focus, the paucity of systemic research with this client group means that this literature forms some useful evidence for those offering systemic family therapy to people with intellectual disabilities. Finally, the chapter examines the utility of family therapy with this client group; an example from practice is included to demonstrate the use of this model. It is concluded that although this approach has much to offer, appropriate ways of evaluating its theoretical ideas and therapy outcomes still need to be developed.

 

3 Lifespan family therapy services Sabrina Halliday and Lorna Robbins

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Sabrina Halliday and Lorna Robbins

When the Leeds Family Psychology and Therapy Service (Leeds FPTS) was set up in 1995, the principles of choice and inclusion were paramount. We wanted to offer the choice of a family therapy service to those people and their families, partners, or carers who traditionally would not have easy access to this form of therapy. We believed that older adults and their families, people with intellectual disabilities and those they lived with, and adults with serious mental health problems could benefit from family therapy. We also questioned the need to have separate child and adult teams. We wanted to provide a family service across the lifespan and draw practitioners from all clinical specialities. This would increase the pool of practitioners available. It would also facilitate access to specialized services for family members where other care needs were identified.

* * *

The Leeds FPTS functions as a tertiary service. Referrals follow a comprehensive mental health needs assessment at the secondary level (Leeds FPTS, 2002). For example, the community team would constitute a secondary-level service for adults with intellectual disabilities. A community nurse might assess that a young man with intellectual disabilities requires individual work regarding his sexuality (which the nurse will provide) and additional family work to help prepare for the move from home. Family therapy, therefore, forms a component in a wider package of care. If the service-user chooses family therapy, there are no other eligibility criteria to meet.

 

4 Setting up and evaluating a family therapy service in a community team for people with intellectual disabilities

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Sandra Baum and Sarah Walden

Over the last few years, the clinical psychology team in New-ham (an inner-city London borough) has developed a family therapy service for adults with intellectual disabilities and their families. This initiative stemmed from an increasing awareness that people with intellectual disabilities live within a complex system of carers, services, and agencies and, as such, sometimes encounter difficulties that can best be understood from a systemic perspective.

* * *

As well as an awareness of the complexity of systems within which people live, the team was also struck by an increasing number of client referrals where, upon assessment, ‘family issues’ appeared to be prominent. These included ‘chronic sorrow’ (Wikler, Waslow, & Hatfield, 1981); grief for the loss of a ‘perfect child’ (Bicknell, 1983); dismay at the loss of an ‘ordinary life’ for the family (Vetere, 1993); anxieties about ‘perpetual parenthood’ (Todd & Shearn, 1996); and transitional issues and out-of-synchrony life-cycle events—particu-larly in relation to the adult with intellectual disabilities leaving home (Goldberg et al., 1995). This suggested that a systemic perspective with a focus on the system, and on interactions and relationships between parts of the system, might well be helpful in work with such families. Furthermore, some of the re-referrals received by the clinical psychology team indicated that this approach might be helpful. These re-referrals typically occurred after individual psychological interventions had been completed during the previous year using specific psychological models, including behavioural models (La Vigna & Donnellan, 1986); cognitive behavioural models (Stenfert Kroese, 1997); and psychody-namic models (Sinason, 1992; Beail, 1995). Many of these re-referrals focused on ‘family issues’, which family members often felt ready to talk about, as they appeared to have had a positive experience of previous psychological interventions. This highlighted the need for an additional, alternative, psychological approach that could complement the individual work that had already been carried out with the client.

 

5 Engaging people with intellectual disabilities in systemic therapy

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Denise Cardone and Amanda Hilton

This chapter describes how we have engaged people with intellectual disabilities in a systemic therapeutic process. We discuss here our work context and the social constructionist theory that informs our practice, using examples from our practice throughout. To more fully illustrate our approach and practice, the chapter concludes with a detailed example of our work with someone with significant intellectual and communication disabilities.

Our context

Our stories begin separately. Initially we worked as clinical psychologists with people with intellectual disabilities in two different National Health Service organizations. Independently, we had started to question traditional ways of working—the theories and models that were informing the ways we both worked as clinical psychologists. Many models of psychology, in common with the models that shape the practices of other disciplines, adopt an approach that sees the individual in isolation from the relationships and contexts that, in our view, have a powerful effect on peoples’ lives and presentations. These bias an individual approach of assessment and diagnosis (i.e., to discover and label a truth) and treatment (according to this truth) of an individual or group. We became increasingly interested in what systemic models had to offer to our understanding and facilitation of change within complex systems and relationships. After meeting, sharing our thoughts, and proposing the idea of working together as a small systemic team, we wondered for some time how we might achieve this, considering the geographical and organizational barriers we faced. However, our conversations continued, and our excitement, enthusiasm, interest, and curiosity about the helpfulness of drawing on systemic ideas grew. Soon our talks became more dominated by ‘Why (ever) not?’ and then this became ‘We will!’ ‘We will’ has now become ‘We are’. We were able to empower ourselves to take our first tentative steps across the barriers of change towards organizing ourselves in a new and different way of working within the same system and organization. We created a clinic-based systemic service for children and adults with intellectual disabilities and their significant others. The process we went through in the creation of our service is one that we hoped would be mirrored in our conversations with clients. We hoped to facilitate conversations that they might find useful in co-creating a different way of looking at where they are, where they might like to be, and how they might begin to take their first steps through ‘barriers’ to find a different way of being with each other. Initially, we found starting a systemic therapeutic service a confusing task as there are many systemic models and little in the literature to indicate which of these might be most useful in working with people with intellectual disabilities. The next two sections outline our approach and practice.

 

6 New stories of intellectual disabilities: a narrative approach

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Katrina Scior and Henrik Lynggaard

The ideas and descriptions of practice presented in this chapter relate to our work as clinical psychologists in two different multidisciplinary community teams for people with intellectual disabilities. While our teams are different in many ways, we both work in large inner-city areas with ethnically and socially diverse populations. We approach our work from the premise that we need to pay close attention to context—be that the context of our clients, our own context, or the social, cultural, and political contexts that shape all our lives. We also believe that a key part of our role as practitioners should be to offer our skills towards empowering people with intellectual disabilities, who, as a group, have long been marginalized, not least through many professional discourses and practices. It was from this premise that we became excited about narrative therapy (White & Epston, 1990). We were particularly attracted to the way that narrative theory and practice attempt to situate problems in a broader social context and question taken-for-granted ‘realities’ and practices. Moreover, we felt an immediate appeal of White and Epston’s (1990) premise that we live our lives according to the stories we tell ourselves and the stories we are told by others, and that people do not usually step outside these dominant stories. These ideas resonated with our experience of working with people with intellectual disabilities and their families and carers. We were mindful that problem-saturated stories can have an amazing longevity in this context and that it can be difficult for all to recognize and remember abilities and resources, rather than being overwhelmed with problems and barriers to change. Consequently, narrative therapy’s invitation to perceive people as separate from their problems and to give them a voice in constructing preferred stories about themselves and their futures seemed both relevant and promising.

 

7 Supporting transitions

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Jennifer Clegg and Susan King

We introduce this chapter by describing the context of our work and the various ways that systemic ideas have affected it. Three systemic ideas inform our transition interventions: ‘side-step autonomy’, ‘keep multiple realities alive’, and ‘expect engagement and disengagement’. These ideas organize the structure of subsequent sections. We summarize the research literature that supports and explains the ideas, some of which may be unfamiliar to professionals working in intellectual disability services. Vignettes illustrate the issues and give some ideas of how we engaged with families or systems seen within our clinic. We conclude by pulling together our thoughts about this work, including some personal reflections.

Our contexts

Our transition into systemic therapists began late in 1997, when we started offering sessions to adults with intellectual disabilities and their carers in a hospital-based clinic and, less formally, in their homes. We are especially grateful to the families and staff who dared to try out an explicitly experimental clinic in its earliest days. Our work has been shaped by training at Leeds and Birmingham, mainly through supervision from Paula Boston and John Burnham; and by support over many years from Mark Pearson.

 

8 Who needs to change? Using systemic ideas when working in group homes

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Selma Rikberg Smyly

Why systemic?

‘Experience is not what happens to you. It is what you do with what happens to you.’

Aldous Huxley (1932, p. 5)

My intention in this chapter is to give you an idea of why I became interested in systemic ideas and to outline some of the theoretical concepts that have been particularly important in influencing my thinking. I also demonstrate through two examples, which describe in more detail the connections between theory and practice, how I have used these ideas when working in group homes.

* * *

What makes ideas appeal to us? Is it their innate complexity and elegance, or is it the manner in which a point of view can be convincingly and well argued? Maybe it is the empirical evidence of effectiveness, which draws us to a particular theory? Maybe—but maybe it is also an inner resonance with particular ideas, as if one had heard it somewhere before, as if in the recesses of our memory lurked some half-forgotten ideas that suddenly become focused. This sense of familiarity, recognition, and instant appeal is likely to have as much to do with our personal histories and experiences as it has with the theories themselves. A typical systemic answer to the above questions would, in fact, be ‘both … and’. What one often forgets, though, is the personal aspect of this appeal, and what one might perhaps emphasize is the quality, usefulness, or evidence base of the theories themselves.

 

9 The practitioner’s position in relation to systemic work in intellectual disability contexts

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Helen Pote

As other chapters in this book have shown, systemic models and systemic family therapy offer considerable opportunities to address the emotional and behavioural needs of clients with intellectual disabilities and the systems in which they live. Reports in the literature support this optimism (Fidell, 1996, 2000; Salmon, 1996; Donati, Glynn, Lynggaard, & Pearce, 2000; Gallagher, 2002; Lynggaard & Scior, 2002; Rhodes, 2002, 2003). However, as with any new endeavour, alongside considerable opportunities, clinical dilemmas remain. Some of these dilemmas are general, in that they relate to working with clients whose emotional needs and voice have historically been ignored (Sinason, 1992; Bender, 1993; Wright & Digby, 1996, cited in Caine, Hatton, & Emerson, 1998; Arthur, 1999). Other dilemmas are more specifically related to the application of a systemic model (Rhodes, 2002, 2003). Unfortunately, no therapeutic process or outcome research yet exists in this area to guide practitioners in their decision making and practice.

 

10 So how do I . . . ?

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Henrik Lynggaard and Sandra Baum

Overview

The contributors to this book have shown many different ways in which systemic approaches can be used and adapted when working with people affected by intellectual disabilities. We know from our own experiences that while a good grounding in the theories that inform any therapeutic approach is invaluable, it is often practical questions of the type ‘How do I … ?’and ‘How can I … ?’ that occupy the practitioner as she or he explores the usefulness or relevance of a different approach. Many of the contributors have shared their experiences of beginning to incorporate systemic approaches into their practice, and we thought it would be useful to summarize some of the contributors’ practical suggestions in one place, adding further ideas where appropriate. We have done this under the heading of a series of questions that some readers might have.

How can I get started?

Individual practitioner’s circumstances and work settings will vary widely and present different opportunities and constraints. Though it is unlikely that a given service model will translate neatly to a different context, a number of contributors to this book describe the journey they embarked on in establishing a systemic service. Some of their ideas may be of relevance to others. For example, Sandra Baum and Sarah Walden (chapter four) provide a six-point guide to establishing a systemic service in a community team for people with intellectual disabilities. Among other things they suggest that practitioners identify colleagues with a similar interest, access supervision, adopt a step-wise approach, and audit their work as they go along. In Baum and Wal-den’s own words:

 

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