CiNii 図書 - Understanding profound intellectual and multiple disabilities in adults

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.

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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Understanding profound intellectual and multiple disabilities in adults

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