Understanding Profound Intellectual and Multiple Disabilities in Adults

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