Key Concepts in Learning Disabilities

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Edited by: Pat Talbot, Geoff Astbury & Tom Mason

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    Copyright

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    Dedication

    In memory of Dave Orton who worked tirelessly to improve the lives of people with learning disabilities.

    About the Contributors

    Editors

    Geoff Astbury, MA, Cert. Counselling, RCNT, RNMH, is a Senior Lecturer, Learning Disabilities, in the Faculty of Health and Social Care at the University of Chester, UK.

    Tom Mason, PhD, BSc (Hons), RMN, RNMH, RGN, is Professor of Mental Health and Learning Disabilities, in the Faculty of Health and Social Care at the University of Chester, UK.

    Pat Talbot, MA, PGDip, RNMH, RGN, is a Senior Lecturer, Learning Disabilities, in the Faculty of Health and Social Care at the University of Chester, UK.

    Contributors

    David Abbot, LLB, MSoc Sc, MPhil, is a Senior Research Fellow at the Norah Fry Research Centre at the University of Bristol, UK.

    Leah Akinlonu, MBChB, MRCPsych, is a Specialist Registrar Psychiatrist with the Waltham Forest Learning Disabilities Team, North East London Foundation Trust, UK.

    Paul Barber, MSc, BSc (Hons), DipN (Lond), Cert. Ed., RNT, RMN, SRN, is Senior Lecturer at the Faculty of Health and Social Care at the University of Chester, UK.

    Alastair L. Barrowcliff, BA (Hons), PhD, Clin, PsyD is Chartered Clinical Psychologist at the Department of Clinical Psychology, Adults with Learning Disabilities Specialism, Leigh Infirmary, Leigh, UK.

    Sara Bell, Med, BA (Hons) Specialist Practitioner, Community Learning Disability Nursing, RNLD, is a Senior Lecturer in Learning Disabilities at the Faculty of Health and Social Care at the University of Chester, UK.

    Kristin Björnsdóttir, BM, MA, is a Doctoral Fellow at The Centre for Disability Studies at the University of Iceland, Reykjavik.

    Jim Blair, MA, PGDipHE, RNLD, Dip SW, CNLD, is a Senior Lecturer in Learning Disabilities at Kingston University and St. George's University of London, UK. Jim is also a Consultant Nurse in Learning Disabilities at St George's Healthcare NHS Trust and a social worker in London, UK.

    Martin Campbell, PhD, BA, TQFE, is Principal Teaching Fellow (Psychology) within the School of Psychology at the University of St Andrews, Scotland, UK.

    Ged Carney, BA, Forensic Nurse Specialist, works for Olive Mount, Merseycare NHS Trust, UK.

    Chris Chennell, is Chief Executive of the Lady Verdin Trust, Crewe, Cheshire, UK.

    David Coyle, MEd, Cert Ed, RN, is a Senior Lecturer in the Faculty of Health and Social Care at the University of Chester, UK.

    Margaret Douglas, MBChB, MSc, MRCGP, FFPH, is Public Health Consultant, NHS Lothian, Edinburgh, UK.

    Helen Elizabeth Dunn is a student at the Petty Pool Trust, Sandiway, Northwich, Cheshire, UK.

    Dan Goodley, PhD, BSc (Hons) Psych, is Professor of Psychology and Disability Studies at the Manchester Metropolitan University. He currently directs the Social Change and Well Being Research Centre at Manchester Metropolitan University, UK.

    Beth Greenhill, D. Clin. Psych. is a Clinical Psychologist at Olive Mount, Merseycare NHS Trust, UK.

    Cathy Harding, Doctorate in Clinical Psychology, BSc (Hons) Psychology, is a clinical psychologist working on the Assessment and Treatment Unit, Llanfrechfa Grange, Gwent Healthcare NHS Trust, UK.

    Glenda Hardy, MSc, PGDE, RGN, OND, Cert A&E, is a Senior Lecturer in the Faculty of Health and Social Care at the University of Chester, UK.

    Angela Hassiotis, MA, PhD, FRCPsych, is Senior Lecturer and Honorary Consultant Psychiatrist in Learning Disability, based at University College London Medical School and Camden Learning Disabilities Services, UK.

    Pauline Heslop, PhD, BSc (Hons), SRN, RSCN, is a Senior Research Fellow at the Norah Fry Research Centre at the University of Bristol, UK.

    Jane Hobson, is a Development Manager, Sheffield, UK.

    Nancy S. Jokinen, PhD, MSW, is a Post Doctoral Fellow at the Centre on Education and Research on Aging and Health at Lakehead University, Canada.

    Helen Kerrell, MA Arts (Autism), RNMH, is Head of Autism and works for a non-profit making company called Opportunity Housing Trust, UK.

    Thomas, M. Kishore, PhD Clinical Psychology, M. Phil. Medical and Social Psychology, MA (Psychology), Bachelor of Mental Retardation, is Assistant Professor of Rehabilitation Psychology at the National Institute for the Mentally Handicapped (NIMH) Regional Centre, Kolkata, India.

    Penny Lacey, BA (Hons), BEd (Hons), PGCE, MEd, PhD, is Senior Lecturer in Education in the School of Education at the University of Birmingham, and Consultant Teacher at Castle Wood School, Coventry, UK.

    Gary LaVigna, PhD, BCBA-D, works for the Institute of Applied Behavior Analysis, Los Angeles, USA.

    Karin Lewis, BSc (Hons) Psychology 1st Class, is an Assistant Psychologist working on the Assessment and Treatment Unit, Llanfrechfa Grange, Gwent Healthcare NHS Trust, UK.

    Nicola Lewis, Doctorate in Clinical Psychology, BSc (Hons) Psychology is a Consultant Clinical Psychologist with Gwent Healthcare NHS Trust, UK.

    Andrew Lovell, PhD, BA (Hons), Cert Ed., RNLD, is Reader in Learning Disabilities in the Faculty of Health and Social Care at the University of Chester, UK.

    Julie Lunt, Dip O/T, works with Helen Sanderson Associates, UK.

    Elizabeth Mason-Whitehead, PhD, BA (Hons), PGDE, SRN, SCM, RHV, ONC, is Professor of Social and Health Care at the University of Chester, UK.

    Jill McCarthy, MSc, BEd (Hons), RN, DN, is a Senior Lecturer in the Faculty of Health and Social Care at the University of Chester, UK.

    Paul James McGavin is a student at the Petty Pool Trust, Sandiway, Northwich, Cheshire, UK.

    Karen McKenzie, MA (Hons) Psychology, MPhil Clinical Psychology, DPsychology, MSc Online Education, is a Consultant Clinical Psychologist working in the Learning Disabilities services in NHS Borders and is Senior Lecturer at the University of Edinburgh, Scotland, UK.

    John Peter Mutch, is a student at the Petty Pool Trust, Sandiway, Northwich, Cheshire, UK.

    Zenobia Nadirshaw, MA, PhD, C Psychologist, CSci, is a Consultant Clinical Psychologist and Head of Psychology in NHS Kensington and Chelsea, Professor at Thames Valley University, Chief Examiner for the D. Clin. Psych. course at the University of Leicester and currently co-chairs the Learning Disability and Ethnicity national group based at The Foundation for People with Learning Disabilities, set up by the Learning Disabilities Task Force/Valuing People Support Team, London, UK.

    Phillippa J. Newman, BSc (Hons), PGCE, RSHom, is a registered homeopath working in clinics in the North West of England. She is also a qualified teacher lecturing in complementary medicine and medical health sciences.

    Chris O'Connor, Doctorate in Clinical Psychology, BSc (Hons) Psychology, is a Consultant Clinical Psychologist and Head of Learning Disability Specialist and Psychological Services, Gwent Healthcare NHS Trust, UK.

    Adedamola Orimalade, MBBS, MRCPsych, is a Speciality Registrar in Learning Disability Psychiatry at the Riverside Centre, Hillingdon Hospital, Uxbridge, UK.

    Dianne Phipps, MA, PGCE, RNMH, is Deputy Head of Mental Health and Learning Disabilities in the Faculty of Health and Social Care at the University of Chester, UK.

    Daniel W. Price-Jones, MSc, PGDip, BA (Hons), BSc (Hons), DipBA, is Forensic Lead for Psychological Therapy Services (Wigan Borough) at 5 Boroughs Partnership NHS Trust, Hollins Park Hospital, Warrington, UK.

    Sue Read, PhD, MA, RNMH, Cert. Ed. (F.E.), Cert. Bereavement Studies, is Senior Lecturer (Research) at the School of Nursing and Midwifery at Keele University, UK.

    Marion Redfern is the mother of a man who has a learning disability and the carer representative on a Learning Disability Partnership Board.

    Ruth, Sadik, MSc Child Health, BA (Hons) Health Studies, RNT, RCNT, RSCM, RGN, is a Senior Lecturer in Child Health in the Faculty of Health and Social Care at the University of Chester, UK.

    Fintan Sheerin, PhD, BNS, PgDipEd, RNID, RGN, RNT, is a lecturer in Intellectual Disabilities Nursing and Director of Post-Graduate Education at the School of Nursing and Midwifery at Trinity College Dublin, Ireland.

    Judith Sim, MA, is a public health researcher, Edinburgh, UK.

    Amanda Sinai, MB, ChB, MRCPsych, is a Specialty Registrar in the Psychiatry of Learning Disability at Camden Learning Disabilities Service, UK.

    Joanne Skellern, RNLD, BSc (Hons), MSc, is Lecturer in Learning Disabilities in the Faculty of Health and Social Care at the University of Chester, UK.

    Elaine Taylor, MA, BSc, RGN, is a Nurse Consultant for Safeguarding Adults and Children in the South Essex Partnership Trust, Essex, UK.

    Mike Thomas, PhD, MA, BNurs., Cert. Ed., RMN, RNT, is Professor of Eating Disorders and Dean of the Faculty of Health and Social Care at the University of Chester, UK.

    John Turnbull, PhD, MSc, BA, RNMH, is Director of Performance, Information and Nursing and Visiting Professor in Learning Disability Nursing. He is affiliated to the Ridgeway Partnership and the University of Northampton, UK.

    Teresa Whitehurst, BSc, PGCert, is affiliated to the Sunfield Research Institute, UK.

    Thomas J. Willis, PhD, works at the Institute of Applied Behavior Analysis, Los Angeles, USA.

    Rachel Wood, MBChB, MPH, FFPH, is Clinical Academic Training Fellow, Public Health Sciences at the University of Edinburgh, UK.

    Andy Worth, BSc (Hons) Community Health, RNMH, RGN, is a Health Facilitator within the Cheshire and Wirral Partnership NHS Foundation Trust, UK.

    Preface

    The period since the Second World War has been characterised by significant changes in understandings of ‘learning disability’ and approaches to responding to the needs of those who have been captured by this and other terms. A previous belief in the therapeutic value of institutional patterns of service provision evident in many countries has been, it is often argued, undermined by a confluence of a post-war libertarian social climate, human rights legislation and the results of socially-orientated research. This has been supported by a stream of social policy, towards an emphasis on the enabling of life experiences which are as close as possible to those of people who are not described as learning disabled.

    However, the position of many people who have a learning disability remains unenviable. The traumas experienced by those who have been the recipients of the recent failures of some statutory specialist and mainstream UK health services should remind us of a long and often chequered history. People who have a learning disability as a ‘group’ continue to experience (for example): greater physical health difficulties; a greater vulnerability to mental distress; more difficulty than others in gaining meaningful employment; life in families which are (the accepted wisdom says) negatively affected by their presence; the absence of social contacts and friendships which we would want for everyone and the lack of opportunity to be heard in ways which would affect their experiences positively. When people who have ‘learning disabilities’ come from particular groups within our society, from minority ethnic communities for example, then this position is further eroded.

    However, the view that people who have a learning disability are, necessarily, passive victims would be mistaken. Some people who have a learning disability do, of course, experience satisfying lives, within families which are embellished by their presence, while making a real contribution to the social world and to the shaping of social policy and the services which they receive. Much more, of course, needs to be done to ensure that these are the experiences of many more people and it will take further strident action by politicians, society, services, families and people who are described as having a learning disability to make this happen.

    Most readers will be aware of the huge expansion in technology and the many advances that this has brought to the field of medicine. Advances in fibreoptics and keyhole surgery have enabled less trauma in operations and the technology of life support systems has facilitated medical and nursing personnel in maintaining life for longer periods of time. Premature babies are surviving at ever shorter delivery times and advances in in vitro fertilisation have helped many couples to have children that they would otherwise not be able to conceive naturally. However, this advancement in health care technology has had less of an impact on those with learning disabilities, and in reality it may be that the contribution of such advancements has been negative. Whilst mapping techniques and genetic coding projects can reveal diagnostic findings, as yet, they do little to correct such disorders. Furthermore, whilst premature babies are surviving earlier, this inevitably leads to some having brain damage with possible resultant learning disabilities.

    Thus there is a tension between the advancement of technology in health care and our fellow human beings who are left with learning disabilities. This tension is assuaged to some degree by developments in health care service provision and philosophical shifts in multi-professional approaches. We are witness today to an approach to quality services for learning disabled people that is more patient centred and service user focused. This involves multi-professional groups re-focusing their own particular perspectives in relation to other disciplines in an attempt to enhance services and has often been said to be a difficult task. This difficulty has often been evident both for specific groups as well as for certain individuals, but has been achieved (or is being attempted) through industriousness, commitment and enthusiasm. Furthermore, this multi-group approach has also included service user involvement, with a move towards the inclusion of learning disabled voices and views both in terms of service frameworks and educational curriculum.

    It is this fusion of multiple voices into a more cohesive philosophy that drives modern day services for learning disabled people. Although not all services can be said to be perfect, at least there is a drive towards better provision, and this book on Key Concepts in Learning Disabilities aims to be one small driver towards this multi-professional approach.

    PatTalbot, GeoffAstbury and TomMasonChester, UK, April 2009

    Acknowledgements

    There are a number of people who we would like to thank in the construction of this book. First, we would like to extend our thanks to all the contributors who gave of their time and energy. It was a real pleasure to work with so many professionals playing a role in this field. Second, we would like to thank the Dean of the Faculty of Health and Social Care at the University of Chester, Professor Mike Thomas, for his continued support of our project. Third, specific thanks goes to the service users and carers who made a special contribution towards the book and made the message clearer and louder than it otherwise would have been. Fourth, we would like to thank our respective husbands and wives for tolerating us over this time and, finally, thanks to all those at Sage Publications, and in particular Zoe Elliott-Fawcett and Alison Poyner, who advised, encouraged and supported us throughout.


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