Understanding Profound Intellectual and Multiple Disabilities in Adults

201 Pages·2019·2.862 MB·English

by  Dreenagh Lyle

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 explor-
ation 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 that, 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 is
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, careror policy-maker.
Dreenagh Lyle has spent many years trying to understand how best to meet
the needs of those with PIMD. As a parent, family therapist, researcher and
consultant she has much experience in this. This informs her latest role as
visiting lecturer to Learning Disability nursing students.
Routledge Advances in Disability Studies
www.routledge.com/Routledge-Advances-in-Disability-Studies/book-series/
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Understanding Profound Intellectual and Multiple Disabilities in Adults
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ACapabilities Approach
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Understanding Profound
Intellectual and Multiple
Disabilities in Adults
Dr Dreenagh Lyle
Firstpublished2019
byRoutledge
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andbyRoutledge
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©2019DreenaghLyle
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hasbeenassertedbyherinaccordancewithsections77and78of
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Allrightsreserved.Nopartofthisbookmaybereprintedor
reproducedorutilisedinanyformorbyanyelectronic,mechanical,
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ISBN:978-0-367-02962-3(hbk)
ISBN:978-0-429-01979-1(ebk)
TypesetinTimesNewRoman
byIntegraSoftwareServicesPvt.Ltd.
Dedicated to my mother Lilian Darrell and my two extraordinary
daughters, Wednesday and Odyssey.
In memory of Mr Sydney Antony Miller (1967–2018) for all
your kind support and inspiration.

Contents
Preface x
1 The‘ignoredminority’(SamuelandPritchard,2001) 1
Introduction 1
Whytermsanddefinitionsareimportant 2
UKandinternationalterms 2
Researchissues 3
Definitions 4
PIMDdefinition 6
Prevalence 7
PIMDoverlooked 9
Bibliography 13
2 Policyframeworks 16
Introduction 16
Representationoroverlooked? 18
Normalisation 20
Socialmodel 22
Socialmodelandembodimentorsecond-wavesocialmodel 25
Post-structuralsocialmodeland‘brutefacts’ofgenetics 27
Personalisation 30
Self-advocacyakaspeakingup 31
Acknowledgingdifferenceinserviceprovision 34
Beyondsocialmodelinformedframeworks 40
Bibliography 42
3 Disruptingtheillusion 48
Introduction 48
Familycarers 51
Concerns 52
viii Contents
Filmelicitedfocusgroups 60
Concerns 63
Rights 69
Independence 71
Choice 73
INCLUSION:‘It’sapitytheydidn’ttellthecommunitywewere
coming.’ 80
OVERVIEWofstorylinewithparticularreferencetoPIMD 82
Conclusion 85
Bibliography 87
4 Allinthesamedirectionor‘it’snotaboutyou’ 90
Introduction 90
Background 92
Communicationcommunicationcommunication 93
Cultureofpersonalisedsupport 95
Consistency&clarity=trust 96
Routine=consistencyofapproach 99
When‘no’means‘no’ 99
Echoedwordsratherthanlanguage 100
Guidelines,charts,feedbacksheets 102
Physical,intellectualandsensoryaccess 105
Foodandeating 106
Waterandaloeverajuice/digestionandelimination 108
Physiotherapyanddeeptissuemassage 110
Bloodtests 112
Musictherapy 112
Behaviouralsupportneeds:wheredoesthe‘challenge’lie? 113
Containment 115
Buildingateam 116
Training/development 116
Goals 117
Taskbreakdown 118
Conclusion 119
Resources 120
Bibliography 121
5 Raisingoursights 123
Introduction 123
Settingsandservices 124
Personalisation 126
Contents ix
Whyfilmisimportant 129
Raisingoursights 131
Families 134
‘R’espiteor‘r’espite 138
Day/respiteservices 140
Stillfighting 143
Communityspecialisthealthteams 143
Training 144
Bespoketrainingqualification 148
Conclusion 151
Resources 152
Bibliography 152
6 Raisingthebar:Beyondthe‘burdenofnon-productiveness’ 156
Introduction 156
Abuse 158
Deathbyindifference 159
Improvinghealthandlives 161
CIPOLD>LeDR 164
Advocacyadvocacyadvocacy 167
Coreandessentialservicestandards:raisingthebar 170
Conclusion 171
Resources 173
Bibliography 174
Index 178