1st Edition

Understanding Profound Intellectual and Multiple Disabilities in Adults




ISBN 9780367029623
Published July 10, 2019 by Routledge
184 Pages

USD $155.00

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Book 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.

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

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Author(s)

Biography

Dreenagh Lyle is Visiting Lecturer at the University of Hertfordshire, UK.