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

About the Author

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