Understanding Profound Intellectual and Multiple Disabilities in Adults

Description

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. Cover Half Title Series Page Title Page Copyright Page Dedication Table of Contents Preface 1. The ‘ignored minority’ (Samuel and Pritchard, 2001) Introduction Why terms and definitions are important UK and international terms Research issues Definitions PIMD definition Prevalence PIMD overlooked Bibliography 2. Policy frameworks Introduction Representation or overlooked? Normalisation Social model 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 informed frameworks Bibliography 3. Disrupting the illusion Introduction Family carers Concerns Film elicited focus groups Concerns Rights Independence Choice INCLUSION: ‘It’s a pity they didn’t tell the community we were coming.’ OVERVIEW of storyline with particular reference to PIMD Conclusion Bibliography 4. All in the same direction or ‘it’s not about you’ 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 5. 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 qualification Conclusion Resources Bibliography 6. 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