This book explores what happens to people with profound intellectual and multiple disabilities (PIMD) when they reach adulthood. It provides an examination of various terms and definitions in use and a critical exploration of current UK policies.
The author brings a wealth of many years’ experience as a family carer, independent consultant and trainer to demonstrate the significant changes that a person-centred, specialised therapeutic and incremental approach can make to an individual’s life. Advances in medical science mean more than ever, people with (PIMD) are growing into adulthood. What is this experience like for an adult who needs support in all aspects of their life? How do we include them in planning support when their intellectual disability means they cannot tell us first hand, what they want or need? Too often this group are overlooked or considered as an afterthought in policy and planning. Notions of independence, employment and mainstream inclusion are all problematic policy ideas for this group of people. Within one-size-fits-all service planning this focus means there is less capacity to meet their life-long specialist, complex and individualised needs.
Understanding Profound and Intellectual and Multiple Disabilities in Adults is essential reading for anyone who is involved in the lives of adults with profound intellectual and multiple disabilities, whether as a researcher, student, carer or policy-maker.
Table of Contents
Preface; Chapter One: The ‘ignored minority’; Introduction; Why terms and definitions are important; UK and International terms; PMLD > PIMD; Research issues; Definitions; PIMD Definition; Prevalence; PIMD overlooked; Bibliography; Chapter Two: Policy Frameworks; Introduction; Representation or overlooked?; Normalisation; Social model and ‘embodiment’ or second wave social model; Post-structural social model and ‘brute facts’ of genetics; Personalisation; Self-advocacy aka Speaking Up; Acknowledging difference in service provision; Beyond social model frameworks; Bibliography; Chapter Three: Disrupting the Illusion; The New Vision: Rights, Independence, Choice and Inclusion; Overview of storyline with reference to PIMD; Construction of target population; Spreading the Word, Advocacy, Personalisation and Employment; Implications for services for services for people with PIMD; Informal Family Carers; Formal Care Workers; Bibliography; Chapter Four: All In The Same Direction; Introduction; Background; Communication Communication Communication; Culture of personalised support; Consistency & Clarity =Trust; Routine = Consistency of approach; When ‘no’ means’no’; Echoed words rather than language; Guidelines, Charts, Feedback sheets; Physical Intellectual and Sensory access; Food and eating; Water and Aloe Vera juice / digestion and elimination; Physiotherapy and deep tissue massage; Blood tests; Music therapy; Behavioural Support Needs: Where does the ‘challenge’ lie?; Containment; Building a team; Training/Development; Goals; Task Breakdown; Conclusion; Resources; Bibliography; Chapter Five: Raising our Sights; Introduction; Settings and services; Personalisation; Why film is important; Raising our Sights; Families; ‘R’espite or ‘r’espite; Day / respite services; Still fighting; Community Specialist Health teams; Training; Bespoke training; Conclusion; Resources; Bibliography; Chapter Six: Raising The Bar: beyond the ‘burden of non productiveness’; Introduction; Abuse; Death by Indifference; Improving Health and Lives; CIPOLD > :LeDR; Advocacy Advocacy Advocacy; Core and Essential Service Standards: Raising The Bar; Conclusion; Resources; Bibliography; Index
Dreenagh Lyle is Visiting Lecturer at the University of Hertfordshire, UK.