Handbook of Electronic Assistive Technology 0128124873, 9780128124871

Table of contents :
Cover
Handbook of Electronic Assistive Technology
Copyright
List of Contributors
Foreword
Preface
Acknowledgement
Glossary
1 - Basic Neurosciences With Relevance to Electronic Assistive Technology
Introduction
Concepts of Impairment Function and Participation
Basic Neurosciences
How the Central Nervous System Is Made – Neuroembryology
Blood Supply
Basic Structural Anatomy and Physiology
Basic Neurophysiology
Central Nervous System
Motor System
When Things Don’t Work
Specific Conditions
Cerebral Palsy
Neurocutaneous Conditions
Acquired Brain Injury
Stroke
Thrombotic/Embolic Strokes
Cerebrovascular Haemorrhagic Strokes
Tumours
Neurometabolic Conditions/Inherited Metabolic Disorders
Multiple Sclerosis
Parkinsonism
Huntington’s Disease
Primary Dystonia
Progressive Supranuclear Palsy
Dementia
Alzheimer’s
Spinal Problems
Spinal Muscular Atrophies
Motor Neuron Diseases
Peripheral Nerve Problems
Muscle Problems
Myopathies
Muscular Dystrophies
Duchenne’s Muscular Dystrophy
Becker’s Muscular Dystrophy
References
Further Reading
2 - Cognitive Impairment and EAT
Introduction
Developmental, Acquired and Progressive Cognitive Impairment
Specific Versus Generalised Cognitive Impairment
Other Neuropsychological Factors
Impaired Self-Awareness
Motivation
Plasticity
Executive Functioning
Memory
Attention
Implications for Technology Use
Seeing a Benefit
Frame of Reference and Stigma
Lack of Personalisation
Use of Technology for Children and Young People
Ethical Approaches to Cognitive Support
Conclusions
References
3 - Functional Posture
Introduction
What Is Posture and Postural Control?
The Postural Control System
The Neural System
What Is Muscle Tone?
What Is a Reflex?
The Musculoskeletal System
The Sensory System
Feedforward and Feedback Mechanisms
Impairment of Postural Control
What Is Postural Management?
What Is a Functional Posture?
Assessment of Postural Ability for Functional Positioning Solutions
Gathering Your Information
Medical Conditions Affecting Posture
Psychological Factors Impacting Posture
Social and Environmental Factors Affecting Posture
Physical Assessment
Understanding the Position of the Pelvis
Sitting With the Pelvis in Posterior Tilt
Sitting With the Pelvis in Anterior Pelvic Tilt
Pelvic Obliquity
Pelvic Rotation
Direction of the Lower Limbs in Relation to the Pelvis
Movement of the Lower Limbs
Shoulder Rotation and Obliquity
Movement and Position of the Spine
Movement and Position of the Upper Limbs
Position of the Head
Weight Distribution and Loadbearing
Assessment Out of Equipment in the Sitting Position
Using Measurement Tools
Case Studies
Alan’s Case Study (Adult)
Key Assessment Data
Medical
Social/Environmental/Psychological
Physical
Postural Management Goals
Identified Seating Requirements
Recommendations
John’s Case Study (Paediatric)
Assessment Findings
Medical
Social/Environmental/Psychological
Physical
The following postural management goals were identified for John
Identified Seating Requirements
Recommendations
References
4 - Assessment and Outcomes
What Is Assistive Technology?
The Growing Need for Assistive Technology
Assessment and Provision of AT
Assessment Models
The Assessment Team
Referral Forms
Assessment Time
Physical Skills
Sensory Skills
Follow-Ups and Reviews
Outcome Measures for Assistive Technology
International Classification and Function
Individually Prioritised Problem Assessment
Psychological Impact of Assistive Devices Scale
Quebec User Evaluation of Satisfaction With Assistive Technology
Therapy Outcome Measures System
Functional Independence Measure11
Goal Attainment Scaling12
References
Further Reading
5 - Alternative Access Technologies
Introduction
Device
Control Site
Control Interface
Selection Set
Items
Item Size
Selection Set Dimensions
Item Spacing
Item Representation
Fixed or Dynamic Selection Set
Direct and Indirect Selection
Scanning
Coded Access
Seating and Positioning
Keyboards
Keyboard Connections
Keyboard Accessibility Options
Jack’s Case Study
Sticks and Pointers
Barrie’s Case Study
Keyguards
Compact Keyboards
High Contrast Keyboards and Stickers
Large Key Keyboards
Mary’s Case Study
Ergonomic Keyboards
Alice’s Case Study
Touchscreens
Touchscreen Accessibility Options
Styli
Alternative Access to Touchscreen Devices
Pointing Devices
Pointing Device Connections
Pointing Device Accessibility Options
MouseKeys – Controlling the Mouse With the Keyboard
Clicking the Mouse Button
Ross’s Case Study
Dwell Select
Dragging
Double Clicking
Keyboard Shortcuts and Macros
Trackballs
Jennifer’s Case Study
Joysticks
Malcolm’s Case Study
Nick’s Case Study
Trackpads
Chloe’s Case Study
Trackpad Settings
Pen Tablets
Ergonomic Mice
Head-Controlled Pointing Devices
Mouse Pointer Control With Switches
Direct Mouse Control With Multiple Switches
Scanning Mouse Control With One or Two Switches
Mouse Pointer Control With Speech
Digital Assistants
Speech Recognition
Eye-Gaze Access
Eye-Gaze Technology
Assistive Technology Eye-Gaze Systems
Eye-Gaze Software
Applications of Eye-Gaze Systems
Communication
Computer Access
Exploration and Early Learning
Assessment
Selection Set Design for Eye-gaze
Michael’s Case Study
Malcolm’s Case Study
Switch Access
Stephen Hawking’s Case Study
Switch Control Sites
Mechanical Switches
Switch Comfort
Sip-Puff (Pneumatic) Switch
Proximity Switches
Switch Interfaces
Scanning Access
Simple Scan
Group Scan
Directed Scan
Highlighter Movement Control
Switch Actions
Error Handling
Switch Settings
Rate Enhancement and Speed of Access
Speech Recognition
Personal ‘Digital Assistants’
Dictation
Computer Control
Alternative and Augmentative Communication
Microphones
Brain–Computer Interface
Key Points
References
6 - Environmental Control
Introduction
Environmental Control Systems
Definition of Environmental Controls (EC)
Reasons for EC Provision
Environmental Control Functions
Violet’s Case Study
Background
Violet’s Goals and Expectations
ECS Intervention
Follow-Up
Outline of an EC System
User Interface
EC Controller Unit
Control Transmission Signals
Feedback Signals, Processing and Modulation
Controlled Appliances
Mounting and Stands for EC Controller and Accessories
Controller Mode of Operation of Selection Process
Single Switch Scanning Access
Scan Patterns
Single Switch With Temporal Control
Two Switch – User Advanced Scanning
Multiple-Switch Input
Multidirectional – Proportional Input
Speech Recognition Input
Historical Development of EC Equipment
First-Generation Systems: 1960s
Second Generation Systems – ‘Hardwired Fixed Installation Systems’ in the Home: 1980s
Third Generation – Remote Transmission, Portable Controller Systems: 1990s
Fourth Generation – Computer-Based EC Controllers: 2010 Onward
Fifth Generation Utilising the ‘Internet of Things’
Alternative Access to Computer Technologies
Text Entry Methods
Cursor Control Methods
Computer-Based Operating System Adjustments
Tablet-Based Operating System Adjustments
Alternative Access for Computer Gaming
Assessment for EC Provision
Assessment Domains for EC Provision
Means of access or interface to the user
Equipment Specification to Meet the Control Needs of the Individual
Operational Aspects and Management of Risk With EC Provision
Evidence Base for Effectiveness of EC Provision
Qualitative Indicators
Summary
References
Further Reading
7 - Alternative and Augmentative Communication
Introduction
A History of AAC
Prevalence of Need
Defining and Classifying AAC Systems
Components of an AAC System
Input Methods
Selection Sets and Language Processors
Output Methods
Assessment
Body Functions and Structure
Activity and Participation
Environmental Factors
Personal Factors
Communicative Competence
Linguistic Competence
Operational Competence
Social Competence
Strategic Competence
Communication Partners and Communicative Competence
Communicative Competence – Moving Forward
Evidence-Based Practice in AAC
Patient Values and Preferences
Clinical Experience
Best Research Evidence
Practice-Based Evidence
AAC Service Delivery in the United Kingdom
England
Scotland
Wales
Northern Ireland
Conclusion
Nikhil’s Case Study (Paediatric)
Background
Assessment and Outcome
Martin’s Case Study (Adult)
Background
Assessment
Martin’s Goals
Options Considered
Outcome
Low-Tech
References
8 - Assisted Living
Definition of Assisted Living
Smart Homes
The Technology
ISO OSI Model of Data Transmission
KNX
LonWorks
BACnet
Powerline Technologies
X10
CEBus
HomePlug
Radio Frequency
Z-Wave
Zigbee
EnOcean
Bluetooth
Thread
Internet Protocol
OSGi
Smart Homes in the United Kingdom
INTEGER
The AID House
The York Smart Flat
Wigton Smart Home
CUSTODIAN
Cambus Smart Cottage
Bath Institute of Medical Engineering
John Grooms Housing Association
The Cedar Foundation
Hereward College
Manchester Methodist Housing Association
Millennium Homes Project
iCue
Automation
Flexibility in Control Layout
Adaptability of Design
Selectivity
Safety Monitoring
Active Support of Lifestyle
Lifestyle Monitoring
Carer Support
The Use of Telecare and Telehealth in Assisted Living
Telecare
Telehealth
Telehealth and Telecare in Europe
The Internet of Health
Concluding Remarks
References
9 - Powered Mobility
Introduction
Indoor or Outdoor?
Further Variations
Models of Provision
Assessment
Control Systems
Outline Operation
Joysticks
Programming
Outputs
Maintenance and Reliability
Powered Wheelchair Selection
Introduction
Seat to Ground Height
Drive-Only Powered Chair
Method of Driving Access
What Powered Functions Will Be Required?
Tilt-In-Space and Recline Functions
Powered Elevating Leg Rest/s
Powered Seat Height Adjustment
Standing Function
Drive Wheel Options
Rear Wheel Drive
Mid-Wheel Drive
Front Wheel Drive
Comparison of Wheel Layouts With Respect to Space Requirements for Turns
Further Considerations With the Home Environment
Specific Points for Use in an Educational Setting
Workplace Considerations
Psychological Adjustment to Using a Powered Wheelchair
Summary
References
10 - Assistive Technology Integration and Accessibility
Overview
Introduction
History and Research into Integration
Foundations of Electronic Assistive Technology and Integrated Systems
Computer Accessibility
Web Accessibility
Standalone Integration
Communication Aid and Environmental Control Software
Wheelchair Controls
Development in Access Methods
Tablet Technology for Assistive Technology
Looking Ahead
Reasons for Integration
Chris’s Case Study
Factors to Consider When Recommending Integration
Individual Considerations
Input Ability
Cognitive Load
Environmental Considerations
Integrator Considerations
Failure Mode
Mode Switching
Wheelchair Systems
Models of Integration
Dedicated Integrator Unit or Device-Switching Model
Primary/Secondary Pass-Through Model
Wheelchair as Base Model
James’s Case Study
Assistive Technology Software-Mediated Model
Pauline’s Case Study
Operating System Model
John’s Case Study
Conclusions
References
11 - Robotics
Background
A Brief History of Robotics
Emergence of Assistive Robots
Application of Robotics in Rehabilitation
Robots for Physical Therapy and Movement Assistance
Upper Limb Robotic Rehabilitation Systems
MIT-MANUS
Mirror Image Motion Enabler
GENTLE/s System
REHAROB Therapeutic System
Bi-Manu-Track (Reha-Stim, Berlin, Germany)
ARMin
Lower Limb Robotic Rehabilitation Systems
Fixed/Stationary Systems
Lokomat (Hocoma, Volketswil, Switzerland)The Lokomat (Fig. 11-5)5 is one of the more well-researched stationary robotic systems ...
The Lower Extremity Powered ExoSkeleton (LOPES) was developed at the University of Twente to assist stroke patients in walking r...
The GaitTrainer (Reha Stim, Berlin, Germany)The GaitTrainer (Fig. 11-6)6 is a footplate-based end-effector-based device designed...
Overground Walking Systems/Mobile Exoskeletons
ReWalk was the first FDA-approved exoskeleton in 2014 to be used as a personal device at home and in the community. It is approv...
REX (Rex Bionics, New Zealand)7REX (Fig. 11-7)8 is an exoskeleton with actuators at the knee, hip and ankle joints. It enables t...
Hybrid Assistive Limb9The Hybrid Assistive Limb (HAL) is a bilateral lower limb exoskeleton that has been developed for both per...
Ekso Exoskeleton10Ekso is a wearable lower extremity robotic exoskeleton designed for the assistance and rehabilitation of patie...
Indego11Indego (also known as the Vanderbilt exoskeleton) is a powered lower limb exoskeleton designed to enable people with SCI...
ATLAS Exoskeleton12The ATLAS (Fig. 11-8) is a wearable exoskeleton designed to provide walking capabilities for children affecte...
HEI Exoskeleton15Researchers at the HEI-YNCREA School of Advanced Engineering Studies have produced a noncommercial rehabilitati...
Socially Assistive Robots
Robots for Supporting Activities of Daily Living (ADL)
Design Considerations for Robotic Exoskeletons
Roboethics
Future of Robotics
References
Index
A
B
C
D
E
F
G
H
I
J
K
L
M
N
O
P
Q
R
S
T
U
V
W
X
Y
Z
Back Cover

Citation preview

Handbook of Electronic Assistive Technology Edited by Donna Cowan Ladan Najafi

Academic Press is an imprint of Elsevier 125 London Wall, London EC2Y 5AS, United Kingdom 525 B Street, Suite 1650, San Diego, CA 92101, United States 50 Hampshire Street, 5th Floor, Cambridge, MA 02139, United States The Boulevard, Langford Lane, Kidlington, Oxford OX5 1GB, United Kingdom Copyright © 2019 Elsevier Ltd. All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or any information storage and retrieval system, without permission in writing from the publisher. Details on how to seek permission, further information about the Publisher’s permissions policies and our arrangements with organizations such as the Copyright Clearance Center and the Copyright Licensing Agency, can be found at our website: www.elsevier.com/permissions. This book and the individual contributions contained in it are protected under copyright by the Publisher (other than as may be noted herein). Notices Knowledge and best practice in this field are constantly changing. As new research and experience broaden our understanding, changes in research methods, professional practices, or medical treatment may become necessary. Practitioners and researchers must always rely on their own experience and knowledge in evaluating and using any information, methods, compounds, or experiments described herein. In using such information or methods they should be mindful of their own safety and the safety of others, including parties for whom they have a professional responsibility. To the fullest extent of the law, neither the Publisher nor the authors, contributors, or editors, assume any liability for any injury and/or damage to persons or property as a matter of products liability, negligence or otherwise, or from any use or operation of any methods, products, instructions, or ideas contained in the material herein. Library of Congress Cataloging-in-Publication Data A catalog record for this book is available from the Library of Congress British Library Cataloguing-in-Publication Data A catalogue record for this book is available from the British Library ISBN: 978-0-12-812487-1 For information on all Academic Press publications visit our website at https://www.elsevier.com/books-and-journals

Publisher: Mara Conner Acquisition Editor: Fiona Geraghty Editorial Project Manager: Leticia Lima Production Project Manager: Sruthi Satheesh Cover Designer: Mark Rogers Typeset by TNQ Technologies













List of Contributors Steven Bloch  Division of Psychology and Language Sciences, University College London (UCL), London, United Kingdom Jane Chantry  Chailey Clinical Services, Sussex Community NHS Foundation Trust, East Sussex, United Kingdom Michael Clarke  Division of Psychology and Language Sciences, University College London (UCL), London, United Kingdom Donna Cowan  Chailey Clinical Services, Rehabilitation Engineering Services, Sussex Community NHS Foundation Trust, Chailey, United Kingdom Sarah Crombie  Chailey Clinical Services, Sussex Community NHS Foundation Trust, East Sussex, United Kingdom Sara da Silva Ramos  Brain Injury Rehabilitation Trust, The Disabilities Trust, Horsham, United Kingdom Guy Dewsbury  Independent Research Consultant, Peterborough, United Kingdom Charlie Fairhurst  Paediatric Neurosciences, Evelina London Children’s Hospital, Guys and Saint Thomas’ NHS Foundation Trust, London, United Kingdom Tom Griffiths  Communication Aid Service East of England (CASEE), Cambridge University Hospitals NHS Foundation Trust, Cambridge, United Kingdom; Division of Psychology and Language Sciences, University College London (UCL), London, United Kingdom Geoff Harbach  Birmingham Community Healthcare NHS Foundation Trust, United Kingdom Matthew Jamieson  Computer and Information Sciences, University of Strathclyde, Glasgow, United Kingdom Simon Judge  Barnsley Hospital, Barnsley Assistive Technology Team, University of Sheffield, School of Health and Related Research, Rehabilitation and Assistive Technology Group, BARNSLEY, United Kingdom Lakshmi Krisha Kanumuru  Intelligent Interactions Group, School of Engineering and Digital Arts, University of Kent, Canterbury, Kent, United Kingdom Layla Bashir Larsen  Intelligent Interactions Group, School of Engineering and Digital Arts, University of Kent, Canterbury, Kent, United Kingdom; East Kent Hospitals University Foundation Trust, Department of Medical Physics, Kent and Canterbury Hospital, Ethelbert Road, Canterbury, Kent, United Kingdom Jeremy Linskell  NHS Tayside, Dundee, Scotland Dave Long  AJM Healthcare, United Kingdom; Oxford University Hospitals NHS Foundation Trust, United Kingdom Joanne McConnell  Oxford University Hospitals NHS Foundation Trust, United Kingdom; R82, United Kingdom

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xii  List of Contributors

Ladan Najafi  Medical Physics, East Kent Hospitals University NHS Foundation Trust, Canterbury, United Kingdom Jemma Newman  Electronic Assistive Technology South West, North Bristol NHS Trust, Bristol, United Kingdom Paul Nisbet  CALL Scotland (Communication, Access, Language and Literacy), The University of Edinburgh, Edinburgh, United Kingdom Paul Oprea  Intelligent Interactions Group, School of Engineering and Digital Arts, University of Kent, Canterbury, Kent, United Kingdom Katie Price  Division of Psychology and Language Sciences, University College London (UCL), London, United Kingdom Konstantinos Sirlantzis  Intelligent Interactions Group, School of Engineering and Digital Arts, University of Kent, Canterbury, Kent, United Kingdom Alan Woodcock  Medical Engineering Physics - Rehabilitation Engineering Division, King’s College Hospital NHS Foundation Trust, London, United Kingdom













Foreword Assistive technology is more important than ever. Growing numbers of people with care and support needs challenge us to think of new ways to care for and offer support to them. Technology can and will be an important part of these new ways, because it is necessary – our present way of doing it is simply insufficient and not sustainable – but also because it is possible. Never before in history has technology developed as fast as today and this will generate new things that will prove to be of great value. Harnessing that potential for the benefit of people who need care and support in such a way that it really helps and offers meaningful support is the challenge. To do this, professionals in health and social care will have to obtain knowledge about these new technologies and about the needs and requirements of their clients, so that they can support them in finding the optimal match between technology and their clients. This is why this handbook of electronic assistive technology (EAT) is timely and important. It offers a guide to the complex and rapidly developing landscape of technologies that have the potential to improve people’s lives. It will raise health and social care professionals’ awareness of the potential of technology and take away some of the fears many of them have when it comes to applying these new technologies. I hope it will also help the people who may benefit most from using these technologies to discuss the possibilities and to negotiate optimal solutions that give them the opportunities to live the life they want. Of course there are many complex issues to be solved when EAT becomes more usual: questions about quality and safety, privacy, liability, financial issues, etc. But don’t let these issues stand in the way of using the great potential that new technologies offer; as with all new developments, they will be solved. Luc de Witte Professor of Health Services Research, Centre for Assistive Technology and Connected Healthcare, University of Sheffield, UK President of the Association for the Advancement of Assistive Technology in Europe

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Preface Both the editors are leads of assistive technology services who regularly train engineers and therapists in the assessment, prescription and provision of electronic assistive technology (EAT). They identified that there was a gap in the market for a book specifically concerning EATs to support the new entrant to the field. The Handbook of Electronic Assistive Technology is a text intended for engineering and therapy students, healthcare trainees, professionals working in allied fields and academics working and teaching these topics. The authors are all experienced practising clinicians and academics working in this field. The book starts with chapters on the basics of neuroanatomy and physiology, cognition and postural management because understanding these areas in practice is a prerequisite to any EAT intervention. The most commonly found EATs are then described with some background as to how these devices have evolved, how they are provided in the United Kingdom and essential assessment considerations. Some chapters are supported by real life case studies that are intended to support the reader by demonstrating how theories have been put into practice. Emerging areas of assistive technology are also covered such as robotics and assisted living because these are likely to develop and become an accepted part of a range of strategies used to support people with disabilities and the older person to remain independent in their own homes. The book was commissioned following both editors contributing to another Elsevier text, Clinical Engineering: A Handbook for Clinical and Biomedical Engineers. This covered many fundamental engineering areas and for this reason basic clinical engineering subjects are not included in this EAT handbook. The editors would recommend it to therapists and other clinicians who wish to expand their knowledge base, or engineers unfamiliar with medical device management. As demonstrated by the many disciplines of the authors who took part in the writing of this book, EAT is a multi-disciplinary subject area and so this handbook is intended for a range of disciplines. While this book is about “technology” the focus is given to the underlying principles and how they are applied, rather than to the specifics of a technology because this is rapidly changing. It is anticipated that most readers will have some understanding of the topic and are familiar with the terminologies mentioned. However, readers without any background should also be able to gain from this book and find it a valuable reference.

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Acknowledgement Compiling this book has been an amazing journey, bringing clinicians, service leads, academics and researchers together. We are indebted to all authors and those supporting them who responded to all our deadlines in a timely manner despite all their work pressures. We understand how difficult it is for those in various sectors and mostly in senior positions to allocate time to projects like this. Dr Donna Cowan: I would like to thank all those who have inspired and mentored me throughout my career in rehabilitation engineering, in particular Professor Colin Roberts, Dr Alan Turner-Smith and Dr Terry Pountney. I have learned that you need to do the things that interest you and to enjoy what you do. I have had the good fortune, most of the time, to be able to do just that. I would like to thank my family Sean, Jack and Kate for the endless patience, love and inspiration they provide, and my sister Cheryl for always providing a plan. Thank you to my colleagues and the families and children at Chailey Clinical Services who have taught me so much. Finally, thank you to Ladan for inviting me to join her as editor for this book. As always, it has been a pleasure to work with her. Ladan Najafi: First and foremost I would like to thank my family for their support, love and encouragement throughout my career. I would like to express my gratitude to my colleagues in the Kent and Medway Communication and Assistive Technology (KM CAT) Service-Adult Team for their support and understanding during the time I spent editing this book. I am also very thankful for all I have learned by working with them, and those working at Chailey Clinical Services, where I started my career as a trainee in electronic assistive technology under Dr Cowan’s supervision and management. I am grateful to Julie Bradford (KM CAT-Adult Team) for providing a case study at the last minute. Last but not the least I would also like to thank one of our service users, Martin Page, for his support and input with the case study.

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Glossary AAL  Ambient assisted living (AAL) comprises concepts, products, and services that combine new technologies and the social environment in order to improve quality of life during all periods of life. Abduction  Movement away from the midline of the body (e.g., abduction of the hip is moving the knee outward). Accessibility framework  Set of tools and standards built into an operating system with the aim of making the operating system and software built to run on this operating system more accessible to those with disabilities. Actuator  Mechanism by which a control system acts on an environment. Adduction Movement toward the midline of the body (e.g., adduction of the hip squeezes the legs together). Anterior cingulate  Frontal part of the cingulate cortex, which surrounds the frontal part of the corpus callosum. This area is involved in the regulation of heart rate and blood pressure, other autonomic functions, and high-level functions like making decisions, impulse and emotional control, and anticipation of rewards. Apathy  Lack of emotion or interest in life. An apathetic presentation in a neurological patient refers to the long-term, often debilitating, state of reduced emotional experience, low motivation, and drive as a result of the neurological condition. Aphasia  Language disorder in which there is absence of ability to form or comprehend speech or language i.e., where thoughts cannot be converted into verbal language. The word is often used when dysphasia is intended where dysphasia includes moderate language impairments. API Application programming interface (API) is a set of clearly defined methods of communication between various software components. Apraxia  Motor disorder in which there is difficulty motor planning to perform tasks or movements but where the individual understands what is being asked. Attenuation  Reduction of the force, effect, or value of something. In the attenuation model of selective attention, information that enters the senses is preconsciously either attended to or attenuated depending on its physical properties and activation threshold. Autonomic function  Function controlled by the autonomic nervous system. That is largely unconscious functions such as heart rate, digestion, respiratory rate etc. BACNet Communications protocol for building automation and control networks that leverage the ASHRAE, ANSI, and ISO 16484-5 standard protocol. Bit  Basic unit of information used in computing and digital communications. Bluetooth  Wireless technology standard for exchanging data over short distances from fixed and mobile devices and for building personal area networks (PANs). Bluetooth  Short-range radiofrequency protocol for interdevice communication, used on most current mobile phones, tablets, and computers. Byte  Unit of digital information that most commonly consists of 8 bits. Cognitive reserve Individual’s resilience to neurological damage through optimization of damaged neural resources (e.g., the extent to which the individual uses different neural networks or cognitive strategies to compensate for damage and to retain functional abilities). It is also often used in place of/interchangeably with the term “brain reserve,” which refers to the amount of damage a brain can

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endure while still functioning (with emphasis on the capacity; for example, larger brains or those with more neuronal connections can suffer more damage before reaching a threshold, below which functioning becomes impaired). Factors such as higher childhood cognition, higher educational attainment, and increased involvement in activities have been shown to contribute positively to cognitive reserve. Compensatory strategies In neuropsychological rehabilitation, this phrase means strategies used to compensate for functional abilities reduced as a consequence of neurological disability (e.g., use of a diary or calendar to help people organise their lives and remember activities). This is contrasted to remediation or training that aims to restore cognitive abilities to allow the patient to function independently of compensatory guidance (e.g., goal management training to help people stop and think about what they need to do). Computer accessibility  Field and practice of making computing devices more accessible to those with disabilities. Computed tomography (CT) CT scan uses combinations X-ray measurements taken from different angles to provide cross sectional slices of areas of the scanned area. It provides details images of organs bones, soft tissue and blood vessels. Concreteness  Impaired abstraction; a patient who meets this description in clinical neuropsychology may have difficulty detaching from the immediate stimuli or environment. DECT  Digital enhanced cordless telecommunications. Disinhibition  Inability to stop oneself from behaving in a certain way, usually impulsively and in a way that disregards social conventions. This is a common symptom of executive dysfunction after brain damage. Dorsiflexion  Flexion movement that occurs at the ankle and is a movement of the toes toward the shin. Dorsolateral pre-frontal cortex  Top of the frontal part of the human brain; important in executive functioning (e.g., planning, inhibition, cognitive flexibility, working memory). Dwell select  Selection of an item on computer screen, by means of moving the cursor to rest or hover over it for a predetermined, but adjustable, time period. Dysexecutive symptoms  These include cognitive symptoms (e.g., poor short-term memory and attention span), emotional symptoms (e.g., difficulty inhibiting or interpreting emotions), and behavioural symptoms (making poor judgements, breaking social conventions). EADL  Electronic aids to daily living; an alternative term for environmental controls. EC  Environmental control. Echelon  American company responsible for design of LonWorks. Electroencephalography (EEG)  Detection of electrical signals arising from brain activity. Electromyography (EMG)  Detection of electrical signals arising from muscle activity. EnOcean  Energy-harvesting wireless technology used primarily in building automation systems. Environmental control system (ECS)  Form of electronic assistive technology that enables people with significant disabilities to independently access equipment in their environment. Errorless learning  Rehabilitation technique that ensures the person always responds correctly. As each skill is taught, a prompt or cue is provided immediately following an instruction with the aim of preventing incorrect responses. This technique reduces the possibility of mistakenly learning incorrect responses in people with memory impairment. European Home Systems (EHS)  Protocol aimed at home appliances control and communication using power line communication. It is one of the smart home systems that converged to form the KNX standard. European Installation Bus (EIB) One of the smart home systems that converged to form the KNX standard. Executive functioning  Functioning of the various fractionated cognitive processes that contribute to cognitive control; includes inhibition, self-monitoring, cognitive flexibility, and working memory capacity.

Glossary  xxi

Extension  Straightening movement that increases the angle between two body parts (e.g., when straightening the knee). When a joint can move forward and backward such as the neck and trunk, extension refers to movement in the posterior direction. External rotation (sometimes termed lateral rotation)  Rotational movement away from midline (e.g., with a straight leg, by pointing the toe and turning the leg outwards, you are externally rotating the hip). Fieldbus  Family of industrial computer network protocols used for real-time distributed control. Flexion  Bending movement that decreases the angle between two body parts (e.g., flexing the knee is moving the foot toward the buttock and decreasing the angle at the knee joint). When a joint can move forward and backward, such as the neck and trunk, flexion refers to movement in the anterior direction. Frontal lobes  Area at the front of the cortex in the human brain; this area is the most recently evolved and includes areas involved in executive functioning. Frontotemporal dementia  Form of dementia distinguished by its progression from the frontal and temporal areas of the brain. Dysexecutive symptoms or language deficits are often the earliest experienced by patients as areas responsible for emotional control, inhibition, and language processing. Functional magnetic resonance imaging (fMRI)  Imaging technique that builds on the technique of MRI and measures brain activity by detecting changes in blood flow when an activity occurs. When an area of the brain is in use blood flow to that area increases. There are differences in the magnetic properties of arterial (oxygen rich) and venous (oxygen poor) blood. Deoxygenated blood is more magnetic than oxygenated blood. This difference lead to an improved MR signal as the oxygenated blood interferes less with the MR signal and this can be mapped to show neuron activity. Gateway  Network node equipped for interfacing with another network that uses different protocols. Hemianopia  Decreased vision or blindness in half the visual field, usually one side of the vertical midline. Both eyes are affected. Huntington disease  Inherited disease that leads to brain cell death; problems with mood followed by coordination difficulties are often experienced as the earliest symptoms. Inferior, middle, and superior frontal regions Regions of the frontal part of the cortex that can be described in terms of their spatial relation to each other from top of the front of the brain (superior) down to middle (middle) and bottom (inferior) regions. Infrared (IR)  Control signals in the infrared frequency range. Integrated Assistive Technology  System designed to allow an individual with a disability access to and control of more than one function, which they would otherwise be unable to achieve. Integrated circuit (IC)  Complex electronic circuitry built onto a single piece of semiconductor of very small dimensions. Interfaces  Shared boundary across at which two or more distinct components of a system interact; for example, the user interface of a computer is where the computer’s hardware, software, and the human user interact. Internal rotation (sometimes termed medial rotation)  Rotational movement toward midline e.g., with a straight leg, by pointing the toe and turning the leg inward, you are internally rotating the hip). Internet of things (IoT)  Network of physical devices, vehicles, home appliances, and other items embedded with electronics that enable these objects to connect and exchange data. Internet of Things (IoT)  Widespread use of internet for communication between devices and systems. IoS  Apple operating system, or Apple device. Keyguard  Raised grid over touch screen to differentiate the discrete selection areas of icons. KNX  Standardised OSI-based network communications protocol for building automation. Kyphosis  Abnormal outward curvature of the spine, usually of the upper back so that the spine is bent forward. Learning difficulty  Developmental cognitive impairment in a specific domain (e.g., reading, arithmetic) and present in the context of neurotypical general intellectual development.

xxii Glossary

Learning disability  Reduced intellectual ability affecting all areas of cognitive functioning and accompanied by difficulties in everyday activities. Local operating network (LONWorks)  Networking platform specifically created to address the needs of control applications. Lordosis  Abnormal inward curvature of the lumbar spine. Magnetic resonance imaging (MRI)  Field of imaging using magnetic fields, electric field gradients, and radio waves to generate detailed images of the body. Master  Device or process that controls one or more other devices or processes (known as slaves). Means of access  Device or method by which a person can operate and interact with an EC unit, computer, phone, or other; EAT examples are push button, touch screen, head tracking, and voice recognition. Mesh Network  Local network topology in which the infrastructure nodes connect directly, dynamically, and nonhierarchically to as many other nodes as possible. Microprompting  Assistive technology that guides the user through a task that can be split into several substeps; for example, a device that talks people through the recipe when cooking a meal. Middleware  Computer software that provides services to software applications beyond those available from the operating system. Neurocognitive  Cognitive abilities closely linked to the function of certain neural pathways or cortical areas. Neurodegenerative Progression of nerve cell damage and death; neurodegenerative diseases include dementias and other diseases such as Parkinson and Huntington diseases. Neurorehabilitation Medical process of aiding recovery from, and alleviating functional difficulties resulting from, injury to the nervous system. NHS  National Health Service in England. Operationalised  To define something in terms of the operations used to determine it. PAN  Computer network used for data transmission amongst devices such as computers, telephones, tablets, and personal digital assistants. Passive infrared (PIR)  Electronic sensor that measures infrared (IR) light radiating from objects in its field of view. Personal digital assistant (PDA)  Also known as a handheld PC; mobile device that functions as a personal information manager. PIC  Programmable or peripheral interface controller (microcontroller IC). Plantarflexion  Extension movement of the ankle and a movement of the toes away from the shin. Premorbid  Before the onset of the injury or illness. Prospective memory  Cognitive processes involved in performing or recalling a future intention. Psychotechnologists  Those who apply technology for the purposes of psychology. Radio frequency (RF)  Any of the electromagnetic wave frequencies that lie in the range extending from around 20 to 300 GHz, roughly the frequencies used in radio communication. Redundancy  Inclusion of extra components that are not strictly necessary to functioning, in case of failure in other components. Registered social landlord (RSL)  General name for not-for-profit housing providers approved and regulated by the government. Remote sensing  Acquiring information from a distance, often with the view of making inferences using that information (e.g., inferring behaviour from GPS position over time). RF Radiofrequency. Scoliosis  Side curvature of the spine. Self-autonomy Independence in functioning without the need for external support, influence, or compensation. Sensor  Device, module, or subsystem whose purpose is to detect events or changes in its environment and send the information to other electronics.

Glossary  xxiii

Shoulder protraction  When the shoulders are drawn forward (anterior to the trunk). Shoulder retraction  When the shoulders are drawn backward (posterior to the trunk). Slave  Device or process that is controlled, along with other devices or processes, by a single device or process (known as a master). SPIU  Specialist peripheral interface unit of an ECS Technology acceptance model (TAM)  Model outlining the factors that influence the use and acceptance of technology. Key factors include perceived ease of use (how easy it will be to use) and perceived usefulness (how useful it will be for its purpose). Telecare  Term for offering remote care of older and physically less able people, providing the care and reassurance needed to allow them to remain living independently in their own home. Telehealth  Collection of means or methods for enhancing health care, public health, and health education delivery and support by using telecommunications technologies. Temporal lobe  One of the four lobes of the human brain (frontal, parietal, temporal, and occipital); temporal lobe is located at both sides of the cerebrum below the lateral fissure. Topology  Arrangement of a network, including its nodes and connecting lines. Transceiver  Device that can both transmit and receive communications, in particular a combined radio transmitter and receiver. Twisted pair  Type of wiring in which two conductors of a single circuit are twisted together for the purposes of cancelling out electromagnetic interference (EMI) from external sources. Vascular dementia  Degenerative disease caused by problems in the blood supply to the brain. Commonly, this is a series of minor strokes that lead to incremental cognitive decline. Web Accessibility  Field and practice of making information and services accessed over the Internet more accessible to those with disabilities. WiFi Radio transmission to allow localised remote access to Internet or IT network. WiFi  Set of media access control and physical layer specifications for implementing wireless local area network computer communication; this allows remote operations. WiFi hub  Control hub for control of appliances in the home connected by WiFi. Wordpredict  Suggested predictions of the word being typed, as each letter is added.

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Basic Neurosciences With Relevance to Electronic Assistive Technology Charlie Fairhurst PAEDI ATRI C NEURO S C I E N C E S , E V E L I N A L O N D O N C H I L D R E N ’ S H O S P I TA L , GUYS AND S AI NT THO M AS ’ NHS F O U N D AT I O N T R U S T, L O N D O N , U N I T E D K I N G D O M

CHAPTER OUTLINE Introduction����������������������������������������������������������������������������������������������������������������������������������������� 1 Concepts of Impairment Function and Participation������������������������������������������������������������������������ 2 Basic Neurosciences���������������������������������������������������������������������������������������������������������������������������� 3 How the Central Nervous System Is Made – Neuroembryology����������������������������������������������������� 3 Blood Supply��������������������������������������������������������������������������������������������������������������������������������������� 6 Basic Structural Anatomy and Physiology���������������������������������������������������������������������������������������� 7 Basic Neurophysiology������������������������������������������������������������������������������������������������������������������� 7 Central Nervous System����������������������������������������������������������������������������������������������������������������� 8 Motor System�������������������������������������������������������������������������������������������������������������������������������� 10 When Things Don’t Work����������������������������������������������������������������������������������������������������������������� 14 Specific Conditions����������������������������������������������������������������������������������������������������������������������� 14 References����������������������������������������������������������������������������������������������������������������������������������������� 25 Further Reading�������������������������������������������������������������������������������������������������������������������������������� 26

Introduction The brain is as complicated and yet as simple as you want to make it, honestly! Talk to a neurologist and they can confuse you within seconds and ramble on for months. Back in the old days, when medical school focused entirely on the minutiae, the complexity of the anatomy and physiology taught was mind numbing. We parrot learnt and forgot it all Handbook of Electronic Assistive Technology. https://doi.org/10.1016/B978-0-12-812487-1.00001-6 Copyright © 2019 Elsevier Ltd. All rights reserved.

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2  HANDBOOK OF ELECTRONIC ASSISTIVE TECHNOLOGY

instantaneously as no relevance was given – I’ve always thought it didn’t need to be like that. We are fundamentally a limited chemical soup, structured in a series of interlinked computerised pathways with a variety of interrelated inputs, mediators and outputs; working on areas of feeling, moving and reasoning. As we develop we start simply and become more and more differentiated. What we can functionally do is initially challenged by child growth; muddled then by our emotional and structural fragilities through adulthood and finally limited by our capacity to maintain senses and biomechanical abilities into old age.

Concepts of Impairment Function and Participation Old concepts of how health impairments lead to physical disability and then handicap were revised by the World Health Organisation (2002), when they developed a ‘common language for functioning, disability and health’, the International Classification of Functioning, Disability and Health (ICF) (Fig. 1-1). This structures the states of: 1. Health in terms of function, activity and participation; and 2. Disability in terms of impairment, limitation of activity and restriction in participation; from both an individual and societal perspective.    This utilises aspects of both a medical and social model of disability to balance the problems of internal health and developmental challenges and the external responses to them, to help us all in developing pathways of appropriate, holistic management. These factors are key when thinking about how we support children and adults with health disorders. Minimise the impact on the individual by maximising health, potential individual function and participation: health and habilitation. Medical therapy teams, engineers, innovators and social support all working together to potentiate ability and minimise disability.

Health Condition (Disorder or Disease)

Body Functions and structures Impairments

Environmental factors

Activities Limitations

Participation Restrictions

Personal factors

FIGURE 1-1  International classification of functioning disability and health (WHO, 2012).

Chapter 1 • Basic Neurosciences With Relevance to Electronic Assistive Technology  3

Basic Neurosciences Before we concentrate on different health disorders often seen in individuals accessing electronic assistive technology, it is important to focus on the basics of how we work. Functionally, the two critical areas for a level of independent life are communication and mobility.

How the Central Nervous System Is Made – Neuroembryology We are all made the same way; how that happens is obviously up to personal practice, but fundamentally a sperm and egg get it together, share their nuclear information and start to double up and double up until a ball of cells is formed – an early embryological blastocyst (Fig. 1-2). At this early point we differentiate into three fundamental layers of cell type: • Endoderm (inner) develops into most of our internal organs. • Mesoderm (middle) develops into muscle and bone. • Ectoderm (outer) develops into skin and the nervous system.    By the fourth week of foetal development, this ball squashes down to a plate, with the ectoderm on one side differentiating into a plate of primitive nervous tissue – the

Ectoderm

Neural plate

Mesodern Groove Week 4

Endoderm Ball of cells

Tube

Flattens/squashes

Week 11

Week 5

Birth FIGURE 1-2  Basic embryology of the nervous system. Courtesy of Fig. 2-1 The development of the nervous system. Barnes, L., Fairhurst, C., 2011. Hemiplegia Handbook for Parent and Professionals. Mackeith Press.

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neuroectoderm. This plate develops a groove and the pizza oval folds up into a calzone, thereby creating a tube with internal neuroectoderm (central nervous system (CNS)) and external ectoderm (skin). This closes from the middle so that complete internalisation occurs at both ends by around day 24, with an obvious top rostral neuropore and bottom caudal neuropore. The head end then bends, flexes and wraps up on itself into what is by 11 weeks a fairly recognisable fore-, mid- and hindbrain with a clear caudal spinal projection. From there, there is lot of neuronal (nerve cell) and pathway specialisation that occurs within the brain while the rest of our body development catches up. The brain cortex folds in on itself to form a large surface area of grey matter within a relatively small volume; core pockets of cells differentiate into a series of integrated central circuits – the basal ganglia; central white matter pathways are constantly created and regress together with a vast differentiation of supporting cell types forming and supporting the nascent system. We used to think that the development of embryological pathways from the CNS out to their specific peripheral effector organs was a carefully structured process. It seems there is a lot more of a blunderbuss approach. The whole cortex sends early projections down circuits to the terminal fields of projection, both on the same side (ipsilateral) and opposite side (contralateral), not just to the areas that they end up innervating but pretty well everywhere. The specific remodelling and restriction of circuits and tract development from certain key areas of the brain is extremely dynamic. Pathways specialise much later in humans than in other mammals, in comparison to the overall timing of foetal development that allows us to increase the complexity of our circuits. By 24/40 weeks of gestation the wiring (axons) from the cells has developed to the lower end of the cord. Rhythmical patterns of movement at an early stage of foetal growth modify innervation, tracts nip and regress, facilitating specialisation of the pathways. By full term, 40/40, there is relatively complete innervation to the peripheries with much more in the way of crossing of messages from one side of the brain to the opposite side of the body. With all the cellular organisation and specification, by the time we are born the brain is more than 10% of our entire body weight, whereas by the time we’re adult it’s only 2%. Though the period of most rapid growth and differentiation occurs in foetal stages, it continues markedly during infancy and early childhood. Ever-changing new cell types are being made, and new pathways are created and subsequently altered. The wiring between different areas of central and cortical grey matter becomes more differentiated, with development of normal insulation of the nerve fibres in the central and peripheral nervous systems increasing the potential speed of nerve signal transition by the laying down of concentric fatty myelin sheathes. In this phase of rapid differentiation and specification there is a considerably greater capacity for neuroplasticity or potential for pathway and neuronal relearning in the stage before myelination is complete. By the time we are 4–5 years of age, the process is pretty stuck; plasticity or pathway modification is much more difficult. The brain normally weighs about 350–400 g at birth and 1 kg by 1 year, and by 2 years of age its relative size, proportions and subdivisions are similar to that of an adult. It’s this

Chapter 1 • Basic Neurosciences With Relevance to Electronic Assistive Technology  5

massive growth of the brain after we are born that differentiates us from other mammals. Unlike wildebeest that need for obvious reasons to speed off across the plains straight after birth, the complex reorganisation that occurs in the human brain postnatally increases the potential complexity of sensory, motor and in particular cognitive interaction and reasoning that we have. As such we are unusual because we have the largest brain of all animals, in comparison to body weight, and most of this growth occurs postnatally. But this time of rapid brain growth is also a period of great risk for the development of a number of neurological problems. Each structure in the nervous system has a period when it is particularly sensitive to the normal influences of the chemical, physical and physiological environment surrounding the foetus in the developing womb, such as intrinsic blood supply and external oxygenation, nutrients, growth factors and hormones. If these are compromised at critical points, then focal or global development of the brain can be compromised. It’s a process fraught with the possibilities of grey matter structures developing wrongly or white matter pathways going haywire. So far so easy? If you look in clinic at the anatomical picture provided by a magnetic resonance image (MRI) of the brain, it is relatively identical in a 2-year-old, a 12-year-old and a 32-year-old. However, with the advent of functional neuroimaging (in particular fMRI) we have been able to look at how the fine wiring of the system develops rather than just purely the block macroscopic picture, and we can see how that alters over time. Advanced imaging methods such as diffusion MRI can be used to study the structural connections of the brain. In this example (Fig. 1-3), tractography has been used to show the major pathways, including the corticospinal tracts (blue fibres) and corpus callosum (red fibres).

FIGURE 1-3  Advanced imaging methods such as Diffusion MRI can be used to study the structural connections of the brain. Courtesy of center for the developing brain, Kings College London.

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In adolescence there is a massive reorganisation of pathways within the CNS; it’s like someone has run into an old-fashioned telephone exchange, yanked all the wires out and stuck them back completely higgledy-piggledy. fMRI allows us to see how our CNS circuits mature, lighting up new organisations like Christmas lights in the teenage brain. Frankly, it’s a miracle they can put one foot in front of the other, just when we expect them to start doing complex exams.

Blood Supply To maintain the integrity of such a complex organ, a mirrored development of an integral blood supply is vital. This blood supply up to the brain from the heart is divided in two. The major branches start from the front of the brain and flow back (internal carotid arteries), and the lesser from the back developing frontward (vertebral arteries). The embryonic blood supply is initiated toward the end of the first third of pregnancy (first trimester). The fragile early blood flow is limited, with arterial supply starting at the surface and migrating inward toward the centre of the forming brain (Fig. 1-4). The ability to maintain brain oxygenation and energy supply independently of the maternal placenta doesn’t happen until around the middle of the second trimester (about 23–24 weeks). Even then the immature and fragile blood supply can easily be disrupted. When looking for antenatal cause, impairments often arise by imperceivable chance rather than by any specific sequelae of obstetric problems, such as maternal infection or variation in blood pressure. As the blood supply forms at the front and back of the surface of the brain (Fig. 1-4) and creeps toward the centre, burrowing deeper, we can see that the areas most susceptible to damage associated with a lack of oxygen or energy are likely to be deep and toward the middle of the brain – the periventricular zones (for more anatomy, see later). These

Development

OUT Anterior Middle

Cerebral artery

Posterior

IN = front = Internal carotid artery Front

Back

Head

Spine

IN = back = Vertebral artery

FIGURE 1-4  Embryological development of the blood supply to the brain. Courtesy of Fig. 2-2 The blood supply to the brain. Barnes, L., Fairhurst, C., 2011. Hemiplegia Handbook for Parent and Professionals. Mackeith Press.

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periventricular areas are predominantly associated with the long motor pathways – the corticospinal tracts, which relay messages from the brain motor cortex down to specific levels of the spinal cord and from there to the musculoskeletal system. The closer any bleed (or haemorrhage) followed by subsequent necrosis of the white matter (periventricular leukomalacia (PVL)) is to the lateral ventricle, the further down the body is the involvement. By 40 weeks of foetal development – full term – most of the brain, especially the cortex, copes relatively well with the transient challenges to blood flow, oxygenation and energy supply that can occur at the time of delivery. At this stage it is the deep grey matter structures of the brain (the basal ganglia) which are most active metabolically and have the greatest energy need. They therefore become prone to damage if starved of oxygen and/or energy for a relatively short period of say 10–15 minutes, resulting in hypoxic/ischaemic encephalopathy (low oxygen, poor blood supply-associated brain damage).

Basic Structural Anatomy and Physiology Basic Neurophysiology The main cells of the nervous system are called neurons; they are key to the input, integration and transmission of electrical signals. The cell body receives electrical input from branches called dendrites and outputs signal via a single elongated axon that transmits to another neuron or a specific end ‘effector’ organ such as a muscle or gland. Different types of neurons have different neural functions throughout all nervous systems and have a variety of microscopic structures, sizes, speeds and types of transmission. The transmitting cells of the CNS are supported and nourished by a variety of other cell types called neuroglia, such as astrocytes, ependymal cells, microglia and oligodendrocytes. This last cell type creates the Swiss roll of insulating material around the axon that works as insulation to markedly speed up the rate of signal transmission. Electrical signals are transmitted between segments of the axon by successive opening of channels down the axonal membrane, with negative or positive charge fluxing on either side of the membrane through selectively permeable chlorine, sodium or potassium channels. Changes in charge are called action potentials and are created by this flux in membrane permeability in response to stimulus or impulse. This action potential travels down to an end point that links with end structures called synapses. Here stimulation of the axonal terminal end plate causes a release of chemical signal across the synaptic cleft, which in turn excites or inhibits electrical signals at the distal postsynaptic membrane. There are a wide variety of chemical substances within the nervous system that have specific roles in up and down stimulating end organs and other neurons via these synapses. Each neuron has a single neurotransmitter transmitting a signal across synapses, such as acetylcholine, serotonin, dopamine or gamma-aminobutyric acid.

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Central Nervous System We have a brain that initiates and modifies neuronal signals, which inputs links between areas and outputs, and a spinal cord that sends messages, down to control movement and up from a variety of sensory organs to allow us to feel different elements of sensation. This is the CNS. From here messages pass to and from somatic senses and motor functions via smaller nerves – the peripheral nervous system. We also have subconscious control of normal body functions, such as heart rate, blood pressure and sweating, via the autonomic nervous system, and also ways of controlling our digestive and bowel habit – the alimentary or enteric nervous system. By the time we reach 18 years our brain on average weighs 1.275 kg in women and 1.36 kg in men. From that point the integrity of the pathways and cellular matrices starts to deteriorate; little hope for those of us in the latter stages of our working life. The brain itself is basically subdivided into three main functional areas. The forebrain: Sitting on the top, covered by a complex system of folded and convoluted cellular areas, which as we have previously stated optimises surface area in a limited skull volume, is the cerebrum. This is partially split into two hemispheres – a left and a right. Underneath it sits the midbrain – the brain stem – and behind this at the base of the brain is the hindbrain – the cerebellum. Each of the hemispheres is then divided into four main lobes (Fig. 1-5) named after the bones that overlie them rather than any easy area of surface delineation: the frontal, parietal, temporal and occipital lobes. These have specific roles to play in our senses, thoughts, words and deeds. There are also two other specific areas important in consciousness and emotional response, which are highly developed in most humans and are found at their confluence – the limbic system and insular cortex.

FIGURE 1-5  Lobes of the brain. Courtesy of Fig. 2 Lobes of the brain. Fuller, G., Manford, M., 2010. Neurology ebook and Illustrated Coloured Text, third ed. Elsevier.

Chapter 1 • Basic Neurosciences With Relevance to Electronic Assistive Technology  9

Frontal lobe function: • Personality. • Behaviour. • Attention. • Cognitive tasks and planning. • Precentral gyrus (back of the frontal lobe) – primary motor cortex.    Parietal lobe function: • Sensation: •  Sense of space – proprioception. •  Postcentral gyrus – touch, pain and temperature. • Language.    Temporal lobe function: • Processing of sensation into memories. • Language creation and comprehension – Broca’s and Wernicke’s areas.    Occipital lobe function: • Visual cortex – Brodmann area 17.    Limbic system – frontoparietal, temporal: • Emotion.    Insular cortex – deep in the fold between temporal, frontal and parietal lobes: • Consciousness. • Emotion. • Perception. • Cognition.    Specific areas of the cortex are involved in specific functions: speech and hearing areas and visual, sensory and motor cortex. When you achieve higher functioning, such as language, there is a greater degree of complexity and dominance of one hemisphere over the other. Sensory input from one side of the body and from half our visual field are projected to the other side of the brain’s cortex. Handedness, understanding, speech and appreciation of the world around us are almost universally dealt with in one half of the brain. Damage to specific areas leads to an inability to process information coming in, and a failure to understand writing, speech or sometimes even sensory input (aphasia). This term is generally used, however, to describe a problem specifically with communication. As such, speech is generally used as a measure of which half of the brain is dominant.

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Hemisphere dominance and handedness are not always the same. The left hemisphere is used for comprehension and control of speech in 98% of adults, whereas only 90% of us are right handed. There are specific areas of the brain that are vital for the processing and expression of language. Broca’s area is involved in creating speech and is situated at the side of the temporal lobe just in front of the motor cortex. Problems with this area, especially in the dominant left hemisphere, can lead to transient or even permanent loss of speech together with a right hemiplegia. Wernicke’s area at the back of the temporal lobe is not so near to the motor cortex. Damage to this leads to a problem with language content. Individuals with a problem in this area can speak with normal grammar, syntax, rate, intonation and stress, but they may use the wrong words, insert nonexistent words, or string normal words together randomly. They do retain the ability to sing or to recite something memorised. Toward the centre of each cerebral hemisphere are fluid-filled spaces called ventricles – third, fourth and lateral. As we’ve discussed, many of the long tracts that transmit neuronal messages from the cortex to the brain stem and beyond are situated close to these lateral ventricles in the white matter periventricular area. As stated, each hemisphere interacts primarily with the opposite side of the body, with motor messages crossing at the brain stem level. Each side also interacts with the other hemisphere by a large bundle of nerve fibres called the corpus callosum, which connects the mirror image points. The brain stem is a hugely complicated network of both groups of cells, such as neuronal grey matter basal ganglia (e.g., putamen, globus pallidus and thalamus), and also nerve fibre/white matter pathways, all massively interlinked like a complex internet system. Most of our automatic feelings, emotions and movements rely on the integrity of these areas. The major sensory inputs from our skin, in terms of touch, pain, hot and cold, are also relayed through the thalamus of the brain stem to the parietal lobe for processing.

Motor System We all know by watching squirming babies that early patterns of movement are similar in almost everybody. We sit before we crawl, then stand and then walk. These functional abilities are synchronised by patterns created by the physical and physiological development of the nervous system. Even in the womb, our spinal cord level reflexes stimulate and co-ordinate unconscious, simple rhythmic movements in muscle groups. When we are born, these primitive reflexes are involved with important functions: rooting for the nipple, sucking and swallowing. As we grow, our brains develop similar reflex motor unit patterns in our limbs and trunk with ever-increasing complexity of balanced muscle stimulation and relaxation. These rhythmic motor patterns at the spinal level, called central pattern generators, have to be started, directed, sped up and slowed down. We do this by using the CNS to

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excite and inhibit the peripheral motor nerves that in turn control the muscles involved in the functional unit. It is the deep parts of the brain, the basal ganglia, including the thalamus, globus pallidus and putamen, that coordinate the basic descending control, upgrading and downgrading signals – the locomotor driving system (Fig. 1-6). Above and related to this we use our thinking, learning and communicating skills, coordinating output using all our other inputs from sight, sound, temperature, touch, pain, balance and position senses, to adapt the way we move – the cortical adaptive system. As well as this adaptive section, other parts of the brain are important in using input messages to keep us balanced and upright (e.g., the cerebellum) – the equilibrium system. These higher functional areas of our brain interact and fiddle with output from the locomotor driving system, down from the brain stem to the spinal levels, coordinating motor units to help us change our strength, direction and speed of movement (Fig. 1-7). At the spinal and peripheral nerve level there occurs what we call the spinal reflex arc. This is the reflex loop that makes your knee jump when the doctor hits it with a tendon hammer. The stretch receptor in the tendon feeds signal back to the spinal cord that it’s being stretched, which intrinsically fires off the motor unit that in turn is connected to that specific tendon. Normally, the brain then acts rapidly to control firing of the system – descending inhibition. When you lose integrity of the circuits, you lose the normal descending motor control and the motor unit continues to fire (clonus) and you lose motor function and ability. The messages are then relayed out from the different spinal cord levels to the groups of muscles that work in a motor unit, contracting and relaxing in turn to move us. Messages

FIGURE 1-6  Basal ganglia. Courtesy of Fig. 2-3 Barnes, L., Fairhurst, C., 2011. The Brain in Hemiplegia Handbook for Parent and Professionals. Mackeith Press.

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FIGURE 1-7  Basic motor system. Courtesy of Fig. 2-4 The control of movement. The blood supply to the brain. Barnes, L., Fairhurst, C., 2011. Hemiplegia Handbook for Parent and Professionals. Mackeith Press. Hemiplegia Handbook

about the world around us are also relayed back from our peripheries, back to the spinal cord and upward using all our different senses such as pain, position, temperature and gross sensation. This occurs using peripheral nerves – simple wiring to and from the CNS going in (the senses), or out (the motor unit). Simple chemical transmitters are used to pass information across small gaps (or synapses) between the various elements of these systems (e.g., from central corticospinal pathway to peripheral motor nerve to muscle). In turn, all muscles work in opposing pairs at each joint: a larger agonist muscle (e.g., biceps at the elbow) and a smaller antagonist muscle (e.g., triceps at the elbow). The complexity of the CNS requires a robust support system as we saw during development and embryology. In an adult, the brain needs about a fifth of the blood supply, oxygen and energy requirements of the whole body. This is pretty greedy as it’s so comparatively small. As we saw during our review of embryological development, blood flows up in a pair of frontal internal carotid arteries and a pair of back vertebral arteries. In the mature system these form a loop at the base of the brain (Fig. 1-8) and send off a series of arteries (including anterior, middle and posterior cerebral arteries, but a large number of smaller vessels). Blockage can be caused by structural damage, clot or fluid embolus, and occurs most commonly in the middle cerebral artery. This feeds and oxygenates the basal ganglia and motor areas of the cortex.

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FIGURE 1-8  Circle of Willis. Courtesy of Fig. 2 Neurology. Fuller, G., Manford, M., 2010. Neurology ebook and Illustrated Coloured Text, third ed. Elsevier.

Localised brain injury or impairment, caused, for example, by a lack of blood flow, leads to patterns of specific functional difficulties or disabilities for the individual concerned. The specific patterns of functional clinical difficulties can almost always be traced back to the part of the brain that is developmentally abnormal or has sustained injury. That’s why neuroanatomy actually matters. This spinal cord is the relay between the brain and the body. It’s pretty complicated but fundamentally is made up of the same bits as the brain: wiring (white matter) and groups of cells (grey matter) that either deal with linking messages (interneurons) or motor output (motor neurons), or manages body balance (autonomic neurons). Sensory neurons that receive messages about position, pain, sensation, vibration and temperature are found close to but not in the spinal cord in groups of cells we call ganglia. A variety of clinical pictures are found if there is damage or pressure to the spine, dependent on which pathways up or down the system are involved: sometimes messages switch sides; sometimes they stay on the same side.

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Messages go into and out of the spinal cord via cable-like bundles of nerve fibres, some with and some without myelin sheaths – these are called peripheral nerves, which are clearly linked out to muscles and organs via the involuntary autonomic system, or in from end sense organs. These include gross and fine touch, position (proprioception), vibration, temperature and a variety of different pains. In the head there are specific cranial nerves that deal with the motor and sensory management of the head and neck. These include the special senses of vision, hearing, balance, taste and smell. That’s quite enough of all that. Except to say that all neurology is useless without a body to manage and interact with. Normal biomechanics, joints, muscles, levers and forces and the wide variety of ways we learn and interact with our environment and others make it all worthwhile.

When Things Don’t Work Any neurological disease state is based on static or progressive impairment of the macroand microanatomy and/or physiology. Disordered systems lead to clinical and functional problems, requiring a team approach to minimise the challenges for the individual. In the medical mind we work in a system or sieve when trying to work out why any health problem occurs.

Specific Conditions Cerebral Palsy Overall prevalence is around 2.6/1000 live births. The most up-to-date definition of cerebral palsy (CP) was outlined by the American Academy of Cerebral Palsy and Developmental Medicine (Bax et al., 2005): ‘(It) describes a group of disorders of the development of movement and posture, causing activity limitation that is attributed to non-progressive disturbances that occurred in the developing foetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, cognition, communication, perception, and/or behaviour, and/or by a seizure disorder.’ There are a number of independent risk factors for the development of CP. Risk factors and causes have been summarised in the recent NICE Guidelines (2017). Antenatal: • Preterm birth – increasing risk the earlier the delivery. • Chorioamnionitis – infection of the womb lining.    Perinatal: • Low birth weight. • Maternal infection especially chorioamnionitis. • Neonatal encephalopathy especially hypoxic/ischaemic. • Neonatal infection.   

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Postnatal: • Meningitis. • Acquired injury before the age of 2 years.    If CP is considered, there are a number of MRI-identified aetiological causes of the nonprogressive disorder of the brain. Damage to the pathways of the brain or white matter occurs in 45%, to the basal ganglia in 13%, focal infarct 7% and congenital malformation 10% (NICE Guideline, 2017). White matter damage, including PVL is more common in children born preterm and generally leads to an upper motor neuron disorder, a picture of high muscle tone, and spasticity, weakness and poor selective control of muscle firing. Basal ganglia damage is generally associated with a fluctuating tone disorder – dyskinetic CP – and is often associated with a perinatal hypoxic/ischaemic event. CP acquired after the neonatal phase is generally associated with infection, particularly following meningitis. When we look and discuss the pattern of CP we describe the following: • Unilateral or bilateral nature. • Predominant movement difficulty: •  Tone – high/hyper- (spastic), low/hypo- or mixed dystonic. •  Movement – hyper-, hypo- or dyskinetic.    The pattern of movement disorder is dependent on where the primary impairment is within the brain: • We grade severity of involvement on various functional scales. The most widely used of these focuses on the gross motor abilities of the individual, the Gross Motor Functional Classification System. This scores mobility on a scale of I–V (Palisano et al., 1997): •  I – Independent community walker. •  II – Mild limitation in independent walking, particularly on slopes and stairs. •  III – Independent walking for short distances; assisted walking or wheelchair use mid- to long distance. •  IV – Independent mobility in manual or powered wheelchair; therapeutic walking at best with support. •  V – No independent mobility – dependent on adults for all mobility needs. • Other scored functional scales focus on areas of communication, nutrition and fine motor ability.    There are unsurprisingly a wide variety of comorbidities (clinical difficulties) associated with the impairment of the brain, in particular epilepsy, chest and gastrointestinal problems. Movement, positioning, communication, comfort and sensory challenges for the individual child or adult are all supported by numerous elements of rehabilitation engineering and electronic assistive technology.

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Neurocutaneous Conditions As we saw, nerve and skin cell types are interlinked at a very early embryological developmental stage. If abnormalities occur in early embryological cell lines then there are a variety of syndromes involving nerve and skin that can develop. Tumours and hamartomas (benign growths full of faulty but normalish cells) are common in the brain, spine, skin, organs and bones. Mobility, communication and vision can all be impaired. Epilepsy, learning difficulties and behavioural problems are all seen at a higher rate. There can also be renal involvement in the kidneys, especially in tuberous sclerosis. There are a number of specific disorders, including: • Tuberous sclerosis (1 in 6000): •  Autosomal dominant/spontaneous. •  Growths in brain and organs. • Neurofibromatosis I (1 in 2500): •  Autosomal dominant/spontaneous. •  Light brown ‘café au lait’ skin patches. •  Hamartomas or neurofibromas in skin, CNS and other organs. • Neurofibromatosis II (1 in 25,000): •  Autosomal dominant/spontaneous. •  Later presentation. •  Tumours on the hearing cranial nerve – problems with hearing, balance and walking. • Sturge–Weber (rare): •  Spontaneous genetic mutation. •  Red/purple ‘port wine stain’ caused by overabundance of capillaries near the skin surface. Blood vessels on the same side of the brain as the stain may also be affected. •  Features may include visual impairment, seizures, muscle weakness, paralysis and developmental delays. • Ataxia telangiectasia: •  Recessive. •  Progressive ataxia and poor motor control from cerebellar degeneration. •  Multidisciplinary team (MDT) input vital.

Acquired Brain Injury It is imperative to score and regularly reappraise levels of consciousness in any acute injury to the brain from whatever cause, and this is done utilising the Glasgow Coma Scale (GCS), or in children the modified GCS. This provides a 15-point score based on (1) best verbal response, (2) best motor response and (3) eye opening to stimulus. A low score is poor prognosis in both morbidity and mortality. The sequelae to any injury are dependent on site and severity of the problem and the speed of initial management. Mild brain injury is generally recovered from well, except for increasing recognition of mild behavioural and learning difficulties. Moderate injury is

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generally associated with more severe cognitive and focal neurological deficits; however, there is usually reasonable resolution. Severe injury is generally associated with poor prognosis regarding morbidity or mortality. Trauma: Damage to the CNS occurs in over 50% of cases as a component of a multiple trauma injury. Injuries can be open and closed: directly to the brain or CNS tissue (concussion or contusion) or from bleeds (haematomas – intracerebral, epidural and/or subdural). These can lead to a build-up of intracranial pressure causing secondary damage from swelling and compression or herniation of parts of the brain tissue through narrow spaces; seriously bad news as this almost invariably leads to coma and death. Infection: The CNS is at risk of infection by a wide range of organisms, including bacteria, viruses and parasites, in spite of a variety of site-specific protection mechanisms. Dependent on the predilection of the organism concerned, they cause a spectrum of difficulties tending to infect either the brain itself or its lining, or both – encephalitis or meningitis or meningoencephalitis. Assessment and treatment is based on finding the correct organism via blood tests and lumbar puncture (in the absence of raised intracranial pressure, which is a complete red flag for sticking a needle anywhere near the back). Postinfective: Some toxins and/or organisms set up an inflammatory response in the brain that leads to reactive autoimmune encephalitis, such as streptococcus, measles and chicken pox, see later.

Stroke • Total childhood incidence – 6/100,000/year. • Total adult incidence – 1.13/1000/year in 2016, slightly lower than in 2006. • Stroke is the third biggest recorded cause of premature death in the United Kingdom. • Relative incidence increases with age, obesity, gender (more men affected) and deprivation.    A stroke occurs when the blood supply to part of the brain is cut off. It can happen because of a clot blocking a blood vessel (ischaemic 80%) or from a bleed into the brain (haemorrhagic 20%) when a weakened blood vessel bursts. Emergency assessment and treatment is vital and long-term rehabilitation is necessary to minimise the impact of damage to the cells and pathways of the brain. Patterns of particular challenges are dependent on the size and position of blood vessel, areas of the brain affected and therefore the extent of damage. There are a number of standardised scoring scales used to assess severity, involvement, management and prognosis. Initial evaluation is focused on working out whether it is caused by a clot or bleed, where the problem is and what caused it. Early neuroimaging is obviously necessary with either computerised tomography or MRI scans. Problems of motor control, cognition, behaviour, gross and special sensation are all seen though not universally. Long-term disability is seen in around 50% of people

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having had a stroke, 30% at least to a moderate level; and around 30% will go on to have a ­recurrent episode. THROMBOTIC/EMBOLIC STROKES • Clots and kinks/narrowing of the blood vessels have a number of risk factors, including age, family history, obesity, diabetes, smoking and risk of heart problems (clots are thrown off from fluttering hearts). • Prevention is vital in people with a high risk; particularly the use of blood-thinning agents (anticoagulation). • Half of all ischaemic strokes involve the middle cerebral artery. Once again, extent is variable but usually a contralateral hemiparesis and hemisensory deficit together with a specific loss of visual field (homonymous hemianopia) is seen (weakness and sensation problems on one side). •  If on the language dominant side (normally left) an aphasia or apraxia is seen. •  If on the nondominant side (normally right) a problem in spacial awareness is seen.    Initial rapid treatment, once a bleed has been excluded, is best provided in a specialist unit where clot-busting therapies try to minimise low blood flow (hypoperfusion), prevent both secondary damage from swelling of the brain and breakdown of cells releasing toxins and also minimise risk of early recurrence. CEREBROVASCULAR HAEMORRHAGIC STROKES • Intracerebral (in the brain) – 10% of all strokes. • Subarachnoid (around the brain) – 7% of all strokes. • Though presentation is similar there are often certain clinical clues, especially headache and vomiting, caused by the rapid increase in pressure in the skull. • Most are secondary to high blood pressure or abnormal blood vessels (vascular malformations – aneurysms).    Initial reduction of blood pressure and consideration of clot removal by neurosurgical teams is necessary. Recovery from stroke is dependent not only on the acute phase of ­treatment but also on the input from a large interdisciplinary team to facilitate function across all modalities of thought, movement, communication and special sense input/­output, as appropriate. This rehabilitation team utilises a wide variety of assistive technology within long-term therapy programmes.

Tumours • Incidence in childhood – 5/100,000/year, commonest is the solid tumour. • Incidence in adults – 28/100,000/year.    Tumours happen at any point of the CNS. They can either be primary, from the different cells of the nervous system, or secondary, disseminated from tumours from other organs. Examples of primary tumours include meningiomas, glioblastomas and astrocytomas.

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Direct problems dependent on the site, including epilepsy, and indirect problems from raised intracranial pressure are often presenting symptoms. Treatment is neurosurgery, radiotherapy and/or chemotherapy, as well as emergency management to reduce intracranial pressure. Considerable rehabilitation and the involvement of the MDT are often vital in minimising morbidity and improving prognosis.

Neurometabolic Conditions/Inherited Metabolic Disorders Various disorders result from genetically determined abnormalities of different enzymes normally found within nerves and their supporting cells. This can affect cellular metabolism and consequently the development, function and viability of the nervous system. The range of enzymatic disturbances is considerable, leading to a variety of clinical syndromes such as inborn errors of metabolism. Problems arise from too little of a product, too little energy being formed, too much of a substrate, abnormal product used for energy or structure building up in the cell. These problems lead either to accumulation of toxic substances or to lack of components essential for normal functioning. The most common inherited metabolic disorders are bracketed into abnormalities of amino acid, carbohydrate, organic acid metabolism and lysosomal storage diseases (build-up of toxins within subcellular organelles). Lesch–Nyhan syndrome is a disorder concerning a normal building block of proteins – purine metabolism that results in a build-up in the body of a waste product, uric acid, that is normally excreted via the kidneys. Toxic levels of this have marked consequences in a number of organs, not least the brain leading to disorders of neurotransmission, particularly in the basal ganglia. An early, rapidly progressive movement disorder is characterised by severe and intractable dystonia, lip and finger biting, together with moderate learning difficulties, attention deficit and compulsive behaviours. Kidney stones, pain and eventually renal failure are part of the progressive picture of the condition. Management of the child and young person is palliative, using diet and medicines to reduce uric acid production and minimise the symptoms. Multidisciplinary management can be extremely challenging, as the movement disorder and behavioural spectrum are so severe. Lipidoses are a group of conditions where fats or lipids are not metabolised and accumulate in cells causing progressive cell and tissue damage. They show recessive or X-linked inheritance. Rate of progression is variable, some with early onset and rapid death and others with slower progressive motor and learning disability, visual problems and epilepsy. Examples include GM1 and 2 gangliosidoses and Tay–Sachs, Niemann–Pick, Batten’s (neuronal ceroid lipofuscinosis) and Gaucher’s diseases. Leukodystrophies are a group of conditions with a deteriorating clinical profile secondary to abnormal development or destruction of the myelin sheath in the white matter. The rate of progression once again varies, with a clinical picture of loss of mobility, hearing, balance, swallowing and memory. Examples include metachromatic leukodystrophy, X-linked adrenoleukodystrophy and Aicardi–Goutieres syndrome.

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MULTIPLE SCLEROSIS In the United Kingdom and similar societies, multiple sclerosis (MS) is the commonest disabling, neurological problem in young adults with a prevalence of 1.2/1000. The exact reasons why MS happens are partly still being discovered; there is so much we still need to learn about the disease. Sticking it in an autoimmune section would cause huge grief to half the neurology community and just a transient nod from the other half. Many believe that there is at least partially an autoimmune element in that our own lymphocytes attack the myelin around nerve axons, disrupting the speed of messages. Over time axons and neurons deteriorate and a more progressive disease takes hold, with increasing spasticity and disability. There is also a variety of genetic and environmental factors. Episodes of subtle signs and symptoms initially resolve but over a longer period the clinical signs from the deficits may stay and progress. Repeated episodes occur as new areas of damage occur within the CNS. MRI scans show areas of demyelination of differing ages and stages. There are four types dependent on the speed of onset and progression: relapsing– remitting, secondary and primary progressive and progressive–relapsing. Initial signs are variable but usually include sensory, visual or motor disturbance. Before the problems become multiple there is a group of around 30% who do not progress. A variety of treatment options have been tried and once again this is an area of huge trial resource internationally, using oral, injected or intrathecal antiinflammatory, immune modulating or immunosuppressive drugs or more recently using the power of restorative stem cells. Support in mobility, communication and ways to maintain independence are key in any individual management programme. Other autoimmune disorders of the CNS are found at the brain and spinal cord levels and once again specific patterns are associated with specific organisms. We have already mentioned postviral infective encephalitis, but the autoimmune encephalitides are caused by antibodies attacking proteins within the CNS. Examples include the increasingly recognised N-methyl-d-aspartate receptor antibodies; encephalitis, sparked off by a number of organisms, including herpes simplex and varicella (chicken pox) viruses; poststreptococcal syndromes such as Sydenham’s chorea; and acute disseminated encephalomyelitis, a severe autoimmune-inflammatory disease, rare but particularly seen in childhood. Systemic immune disorders such as sarcoidosis and systemic lupus erythematosus can also affect the CNS. PARKINSONISM • Overall prevalence – 1.5/1000. • Over age 60 prevalence – 1/100. • Over age 80 prevalence – 3/100.    At least seven genes have been implicated in the degeneration of the dopamine transmitting neurons of the basal ganglia area of the substantia nigra. This causes a chemical

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imbalance – less dopamine, more glutamate neurotransmission – which in turn leads to the clinical signs of reduced movement (hypokinesia), rigidity and tremor associated with Parkinsonism. Apart from the direct motor effects, problems are also seen in: • Autonomic function, particularly in sleep pattern, pain, loss of smell and increased salivation. • Thought processing and planning. • Depression, apathy and impulsive behaviour.    Medicines can be helpful as they can directly affect electrical stimulation of the substantia nigra – deep brain stimulation. Stem cell therapy has been used for a while, with an increasing evidence base. Multidisciplinary therapy input is important for physical and psychological well-being. HUNTINGTON’S DISEASE • Prevalence in the United Kingdom – 12/100,000. • Autosomal dominant, short arm chromosome 4. Selective neuronal loss occurs mainly in the basal ganglia areas of the putamen and caudate nucleus. • Symptoms generally appear around 30–50 years of age. • Increased irregular and sudden movements are accompanied by low muscle tone. Dementia and depression increase over the next 10–15 years followed by death. Palliative care, with support to enable a degree of independence and function over that period, is the focus of management.    PRIMARY DYSTONIA • Damage in the basal ganglia, particularly the globus pallidus (remember the locomotor driving system all those pages ago), leads to uncoordinated motor control, poor fluidity of movement and frequently painful muscle spasms. • Dystonia can be focal or generalised in nature, primary if not associated with another neurological problem, and secondary to hypoxic/ischaemic damage or stroke. • Primary dystonias are extremely rare and specific genetic changes (for example, in the DYT-1 gene) lead to disrupted chemical signalling without macroscopic change. Pantothene kinase-associated neurodegeneration leads to calcium deposition in the globus pallidus causing dystonia, spasticity and rigidity. • As with all basal ganglia problems, support from the full MDT is important to optimise function and reduce discomfort. PROGRESSIVE SUPRANUCLEAR PALSY Progressive supranuclear palsy (PSP) affects approximately 4000 people in the United Kingdom, mostly over the age of 60. It is caused by the accumulation of a protein called tau, which is found normally in brains, but in PSP there is a noninherited, multigenetic abnormality which leads to deficiency of its breakdown. Clumps of tau protein are formed in neurons, particularly in the basal ganglia and brain stem, frontal cortex and cerebellum.

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Progressive problems in walking, balance, eye movements, speech, swallowing and emotional lability are seen at variable rates. It is often misdiagnosed as a Parkinson’s disorder, and indeed treatment options are very similar in terms of medicines to reduce stiffness and discomfort, and therapy input to manage signs and symptoms, helping mobility, care and function. As there is no cure, life expectancy is usually around 6–7 years after the initial presentation of signs and symptoms, normally due to respiratory failure or aspiration-related chest infections.

Dementia • Prevalence 1 in 100 – aged 60–64. • Prevalence 1 in 3 – aged over 85. • Alzheimer’s dementia 40%–50%. • Multiinfarct vascular dementia 15%.    The definition of dementia is a progressive, acquired loss of cognition and memory, often associated with personality change and motor deficit. Sleep problems, psychiatric problems (particularly depression) and agitation are frequently seen.

Alzheimer’s • The is what society commonly thinks of when talking about dementia. • There are both genetic and environmental factors in relative causation. • There is generalised neuronal loss in the cerebral cortex. • Memory, word finding and orientation difficulties progress to increasing depression, confusion and apathy with loss of independence and a life expectancy of around 8 years after onset.

Spinal Problems Infective, inflammatory, traumatic and degenerative conditions are also seen in the spinal cord and the vertebral column. This can lead to disordered nerve transmission to and from the brain and from and to the body. • Injury – the spine is susceptible to shearing forces, direct trauma and compression from blood clots or displaced or fractured vertebrae. This can lead to rapid onset of sensory and motor problems distal to the site with initial floppiness progressing to stiffness. • Disorders – if slow progression is seen, then a tumour has to be ruled out. Cavities within the cord (syrinx) or narrowing of the passages through which it passes (spondylosis) are also other reasons for slowly progressive spinal disorders. The latter is often seen in elderly patients with spongy bones (osteoporosis).    The spine is also susceptible to infection and inflammatory disorders – myelitis. A range of causes is usually not too different from the brain and treatment depends on finding out what’s causing the inflammation.

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There are, however, a few specific clinical patterns from particular organisms that target certain groups of cells. Historically, the most significant of these is poliomyelitis, where the poliovirus specifically infects the motor neurons leading to paralysis. SPINAL MUSCULAR ATROPHIES This is a group of genetic, neurodegenerative disorders of the motor neurons of the spinal cord and brain stem. They are all linked to a specific gene area on the fifth chromosome 5q11.2-13.3. • Selective or global muscle weakness or wasting occurs though there are a variety of patterns, ages of presentation and severities of spinal muscular atrophy. • The main types of spinal muscular atrophies are as follows, they are normally recessively linked in genetic terms, requiring both parents to have the defective gene; the lower the ‘type’ number, the earlier and more severe the presentation: •  Type 1 – seen in babies less than 6 months old. •  Type 2 – appears in babies 6–18 months old. •  Type 3 – develops after 18 months and is the least severe form in childhood. •  Type 4 – affects adults; usually only causes mild problems. • Challenges occur primarily in motor function, but in the most aggressive form the cause of early death is by failure of the respiratory muscles. • A lot of trials are currently in place to try to alter the genetic defects that lead to the destruction of motor neurons. MOTOR NEURON DISEASES This is a group of diseases where motor neurons are destroyed. Degeneration can occur in motor neurons of the CNS (upper motor neurons – (UMN)), peripheral nervous system (lower motor neurons (LMN)) or both. Signs and symptoms vary depending on which nerves are involved but voluntary muscle activity in a variety of areas is lost. Dependent on which motor neurons are primarily involved, symptoms include, weakness, cramps and spasms, stiffness, musculoskeletal pain, immobility, clumsiness, speech, swallowing and saliva problems and breathing problems. Emotional lability and behavioural problems are also seen. Classification is normally sporadic, but forms can also be inherited via autosomal dominant or X-linked genetics, depending on the specific disease. Overall the relative risk rate is about 1 in 300 in a lifetime. Inherited forms can present in early childhood but most present after the age of 50. Treatment is supportive at present though there are drug trials on medications that could potentially slow the progression. Medicines to reduce pain, stiffness and improve swallowing are used and multidisciplinary input and emotional support are vital. Some of the most common include: • Amyotrophic lateral sclerosis (UMN/LMN degeneration) is the commonest adult form of motor neuron disease; onset is normally seen between 50 and 60 years. There is involvement of all muscles, normally starting distally and working centrally. Progressive

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weakness, stiffness, wasting and painful spasms are seen. Problems with walking are often the first signs. Normally, death comes within 3–5 years from involvement of the diaphragm and other respiratory muscles, though some affected individuals live with the condition for much longer. A juvenile form is also seen. • Primary lateral sclerosis (UMN) is a rarer form, which progresses more slowly from lower limb weakness to clumsiness and speech problems. Life expectancy is around 10–20 years after presentation and as this is generally late in life it may primarily be a problem with quality rather than quantity of life. • Progressive muscular atrophy (LMN) is a rarer form, which is slower in progression. It normally presents with clumsiness, cramps and weakness, particularly in the upper limb. • Progressive bulbar palsy (LMN) mainly affects the lower motor neurons in the brain stem. As such the degeneration affects the muscles of the face, mouth, throat and tongue. Progressive expressive speech difficulties and swallowing are often the first signs; it is rapidly progressive with a life expectancy normally of around 6 months to 3 years. Pseudobulbar palsy (UMN) presents in a similar way but is a degeneration of the upper motor neurons that transmit to the lower motor neurons (upper above, lower below – though the symptoms are similar, it’s important for doctors).

Peripheral Nerve Problems Problems within the peripheral nerves cause pain, flaccid weakness and sensory and autonomic disorders (usually seen as sweatiness, paleness, redness, coolness, hotness and even more pain). Once again, they can be caused by local or shearing trauma, compression infection and inflammation. The best known of these is sciatica, one of a variety of conditions caused by spinal nerve root compression from a herniated or slipped disc at any particular level, leading to pain and sensory and movement problems. Groups of nerves can also be involved such as brachial plexus injury (arm) and carpal tunnel (hand) syndrome. Multiple peripheral nerves can be affected, sometimes genetic in origin (e.g., hereditary motor and sensory neuropathies (HMSN)), sometimes reactive to body factors and systemic disease (e.g., diabetic or cirrhotic polyneuropathies), sometimes inflammatory (e.g., Guillain–Barré syndrome), sometimes infective (e.g., leprosy, mumps or diphtheria) and sometimes toxic (e.g., ethanol, lead or some drugs). Hereditary polyneuropathies are generally slowly progressive. The commonest is HMSN type I Charcot–Marie–Tooth disease. Motor, sensory and autonomic components are seen dependent on which pattern of peripheral nerves is involved.

Muscle Problems MYOPATHIES Myopathies cause weakness because of defects in the structure and function of muscle fibres. This has a wide variety of potential causes both primary, i.e., dependent on a disease

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specifically related to muscle, and secondary, i.e., reactive to infective, inflammatory, metabolic or endocrine disorders, which lead to a secondary deterioration. MUSCULAR DYSTROPHIES This is a group of genetic disorders of muscle function leading to weakness and loss of muscle – atrophy. They are generally X-linked, problems from abnormalities on the X chromosome (mainly Xp21.2 position); boys are affected. The muscle fibres degenerate because of lack of specific proteins vital for their function, in particular dystrophin. The rate of progression and pattern of disorder depend on the type of dystrophy. DUCHENNE’S MUSCULAR DYSTROPHY This is the most severe form, with a prevalence of around 2–3/10,000 boys. Progressive weakness presents in the first decade with difficulty in standing or going upstairs. Fat takes the place of muscle, initially in the lower limb; core muscles and upper limb muscles then become involved as the dystrophy progresses. Until fairly recently, early death was caused by involvement in the respiratory muscles, usually in late adolescence. There has been a considerable amount of neurogenetic research in recent years trying to turn back the deterioration by creating new dystrophin and this is a hugely important area of trials. At present, electronic assistive technology plays an enormous role in supporting function and participation in this group of young adults. BECKER’S MUSCULAR DYSTROPHY This is a less common X-linked disorder and less severe with some dystrophin created in muscle. Deterioration is slower with loss of walking for those in their 30s and death a few decades later. There are also a variety of non-X-linked/autosomal muscular dystrophies, which are generally labelled by the muscle areas involved – it does what it says on the tin. Examples include limb girdle and facioscapulohumeral dystrophies. Genetic abnormalities in these are usually dominant and are caused by problems in genetic areas on nonsex chromosomes coding for other proteins important in muscle function.

References Bax, M., Goldstein, M., Rosenbaum, P., Leviton, A., Paneth, N., Dan, B., Jacobsson, B., Damiano, D., 2005. Proposed definition and classification of cerebral palsy. Developmental Medicine and Child Neurology 47 (8). NICE Guideline, 2017. Cerebral Palsy in under 25s: Assessment and Management (NG62). Available at: https://www.nice.org.uk/guidance/ng62. Palisano, R., Rosenbaum, P., Walter, S., Russell, D., Wood, E., Galuppi, B., 1997. Gross motor gross motor function classification system. Developmental Medicine and Child Neurology 39, 214–223. World Health Organisation (WHO), 2002. The World Health Report, Reducing Risks, Promoting Healthy Life. Available at: http://www.who.int/whr/2002/en/. World Health Organisation (WHO), 2012. Towards a Common Language for Functioning. Disability and Health ICF, Geneva. Available at: http://www.who.int/classifications/icf/icfbeginnersguide.pdf.

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Further Reading Appleton, R., Baldwin, A., 2006. Management of Brain Injured Children. Oxford University Press. Arzimanoglou, A., 2018. Aicardi’s Diseases of the Nervous System in Childhood, fourth ed. Mackeith Press. Barnes, L., Fairhurst, C., 2011. The Hemiplegia Handbook. For Parents and Professionals. Mackeith Press. Dale, R.C., Vincent, A., 2010. Inflammatory and Autoimmune Disorders of the Nervous System in Children. Mackeith Press. Dan, B., 2014. Cerebral Palsy: Science and Clinical Practice. Mackeith Press. Fuller, G., Manford, M.R., 2010. Neurology 3rd Edition an Illustrated Colour Text. Elsevier. Gilles, F.H., Nelson, M.D., 2012. Developing Human Brain: Growth and Adversities. Mackeith Press. Hauser, S., Josephson, S.A., 2013. Harrison’s Neurology in Clinical Medicine McGraw Hill Medical. Mettle, H., Mumenthaler, M., Taub, E., 2017. Fundamentals of Neurology. An Illustrated Guide. Thieme. National Institute for Health and Clinical Excellence, 2012. Spasticity in under 19s: Management (CG145). National Institute for Health and Care Excellence, 2014. Multiple Sclerosis in Adults: Management. National Institute for Health and Care Excellence, 2016. Spinal Injury: Assessment and Initial Management (NG41). National Institute for Health and Care Excellence, 2017. Parkinson’s Disease in Adults (NG71). NHS website www.nhs.uk. Snell, R.S., 2010. Clinical Neuroanatomy, ninth ed. Lipincott, Williams and Wilkins. Sugden, D.A., Wade, M.G., 2013. Typical and Atypical Motor Development. Mackeith Press.

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Cognitive Impairment and EAT Sara da Silva Ramos1, Matthew Jamieson2 1 BRAI N I NJ URY REHABI L I TAT I O N T R U S T, T H E D I S A B I L I T I E S T R U S T, H O R S H A M, UNI TED KI NGDO M ; 2 CO M PU T E R A N D I N F O R MAT I O N S C I E N C E S , U N I V E R S I T Y O F S T R AT H C LY D E , G L A S G O W, U N I T E D K I N G D O M

CHAPTER OUTLINE Introduction��������������������������������������������������������������������������������������������������������������������������������������� 27 Developmental, Acquired and Progressive Cognitive Impairment����������������������������������������������� 29 Specific Versus Generalised Cognitive Impairment������������������������������������������������������������������������ 30 Other Neuropsychological Factors��������������������������������������������������������������������������������������������������� 31 Impaired Self-Awareness������������������������������������������������������������������������������������������������������������� 31 Motivation������������������������������������������������������������������������������������������������������������������������������������ 32 Plasticity���������������������������������������������������������������������������������������������������������������������������������������� 33 Executive Functioning���������������������������������������������������������������������������������������������������������������������� 33 Memory��������������������������������������������������������������������������������������������������������������������������������������������� 35 Attention������������������������������������������������������������������������������������������������������������������������������������������� 37 Implications for Technology Use������������������������������������������������������������������������������������������������������ 39 Seeing a Benefit��������������������������������������������������������������������������������������������������������������������������� 40 Frame of Reference and Stigma�������������������������������������������������������������������������������������������������� 41 Lack of Personalisation���������������������������������������������������������������������������������������������������������������� 42 Use of Technology for Children and Young People������������������������������������������������������������������� 44 Ethical Approaches to Cognitive Support����������������������������������������������������������������������������������� 44 Conclusions���������������������������������������������������������������������������������������������������������������������������������������� 45 References����������������������������������������������������������������������������������������������������������������������������������������� 46

Introduction Current models of assistive technology assessment and service delivery emphasise the importance of matching technology with the person to achieve the best outcomes (Federici et al., 2014a,b; Scherer, 2002). Behaviour, and the underlying processes and factors that shape it, is central to a person’s ability to interact with their surrounding environment, Handbook of Electronic Assistive Technology. https://doi.org/10.1016/B978-0-12-812487-1.00002-8 Copyright © 2019 Elsevier Ltd. All rights reserved.

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including electronic assistive technology (EAT). Failure to account for these important factors results in increased risk of nonuse, discontinuance (Phillips and Zhao, 1993) and poor user satisfaction. In their seminal book Neuropsychological Assessment, Lezak et al. (2004) argued that cognitive functions (i.e., those concerned with information processing) have been the main focus of attention when assessing behaviour in patients with brain pathology, because impairments in this area are very prominent, and because they are more amenable to being operationalised, measured and correlated with the underlying neural systems. However, the authors also note that brain damage rarely affects only cognition, and that emotionality (i.e., concerning feelings and motivation) and executive functions (i.e., comprising control on how behaviour is expressed) are likely to be involved, regardless of the size and location of the pathology. Cognitive impairment is common to most brain pathologies (Sachdev et al., 2009; Skaper et al., 2014). However, there is significant variation in terms of severity, presentation and course (Libon et al., 2007; Lillo and Hodges, 2010; Sachdev et al., 2004). An understanding of a person’s neuropsychological profile will inform technology prescribers on the factors that influence each individual’s behaviour and their ability to engage and be supported by technology. The need for knowledge of the subjective dimensions of behaviour and individual functioning in the context of the surrounding environment has been acknowledged in the relevance afforded to the role of the psychologist within the assistive technology assessment process (Federici et al., 2014a,b). Further understanding of these factors from a technological perspective will, in turn, enable technology designers, or psychotechnologists (Federici et al., 2014a,b) to find the best match for each individual, and address the through tailored design. This chapter will consider the three key areas of cognition, emotionality and executive function. It will examine how these might affect a person’s ability to use and benefit from technology, and the strategies and techniques available to technology prescribers and designers to address some of the challenges they pose. At an individual level, cognitive, emotional and executive impairments present in many forms, however, it is possible to delineate general characteristics, which can guide and inform the assessment process and afford some degree of ability to predict user agreement and service efficiency, effectiveness and satisfaction. There is no single or widely accepted method to assess cognitive functioning, and the use of any tool must be accompanied by an understanding of the individual’s characteristics and aetiology of the illness or injury that led to cognitive impairment. Typically, the tools available have been designed and validated for use with specific age or clinical groups, or developed to assess different aspects within a particular cognitive domain (e.g., executive function). In many cases, only a full assessment by a neuropsychologist will enable technology prescribers to gain an understanding of the range and interaction between different aspects of function. However, screening tools are available, which help determine whether and to what extent, cognitive impairment is likely to be present. Cullen et al. (2007) provide a review of different screening tools for different purposes.

Chapter 2 • Cognitive Impairment and EAT  29

Of the 39 tests identified, the Addenbrookes Cognitive Examination (ACE-R, Mioshi et al., 2006) covers key cognitive, psychiatric and functional abilities and its latest version (ACE-III, Noone, 2015) has been widely used in a variety of settings to date. The Oxford Cognitive Screen (Demeyere et al., 2015) was designed for use with stroke patients; however, it has the advantage of being suitable for administration to those with aphasia and neglect, and it returns a visual snapshot of a person’s cognitive profile, which can be useful in identifying potential barriers to the use of EAT. Further work is clearly needed to validate and evaluate the value of different screening tools in the context of technology prescription.

Developmental, Acquired and Progressive Cognitive Impairment Diagnosis of cognitive impairment is not straightforward. Practitioners and researchers acknowledge the limitations in both the current scientific knowledge and in the diagnostic tools available to them (Berk, 2013; Carlew and Zartman, 2016; Ruff, 2003). A number of features are widely recognised and differentiated, as they adequately reflect clinical presentation, have some value in aiding prognosis, and map into the aetiology of the impairment. The International Classification of Diseases (ICD) and the Diagnostic and Statistical Manual for Mental Disorders (DSM) are key references in the field of psychology. Their conceptualisation of disorders with known biological aetiology has evolved over time, with an increasing focus on empirical knowledge (Carlew and Zartman, 2016). Both manuals distinguish cognitive impairment that occurs early in life, changes over the course of the lifespan and persists into adulthood (neurodevelopmental disorders), from cognitive decline that arises suddenly (acquired) or gradually (progressive) in adulthood (neurocognitive disorders). This general distinction is informative because the characteristics and course of the cognitive and functional abilities differ across the three categories of disorders: developmental, acquired and progressive. Neurodevelopmental disorders are characterised by persistence of symptoms into adulthood, but also by changes in symptoms over the course of the lifespan (Carlew and Zartman, 2016). In contrast, the diagnosis of neurocognitive disorder requires the presence of decline from a previous level of performance (Simpson, 2014). In acquired disorders (e.g., cognitive deterioration associated with traumatic brain injury), this decline may not be permanent, or it may be amenable to treatment and rehabilitation (Berlucchi, 2011; Robertson and Murre, 1999). In progressive disorders (e.g., dementia of Alzheimer’s type), the initial cognitive decline is likely to aggravate over time, and the range of impaired functions likely to broaden. These differences typically have implications for various steps of the process of prescribing assistive technology (Stack et al., 2009), in particular its usage, including installation, personalisation, length and intensity of training of the end-user and of their supporting environment. It may also influence other aspects of the process and its

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outcome, such as whether or not a person will initiate the seeking of technology, the length of time the technology is used and whether or when changes to existing needs are likely to occur. Thus, depending on the level of residual capacity (Robertson and Murre, 1999), those with an acquired neurocognitive disorder may need a high degree of support and instruction in the initial stages, but once the use of a device has been learned and accepted, few adjustments may be required (Rispoli et al., 2014; Wong et al., 2016). In this case, discontinuation of a device may indicate a good outcome – where the person has regained a lost function and the support from technology is no longer needed (Bergman, 2002; Brown et al., 2012; Oddy et al., 2013). The prognosis for progressive disorders tends to be a less positive one. When the process of assistive technology delivery is initiated, prescribers, end-users and their support network need to gain an understanding of the changing needs associated with the condition, manage expectations and schedule regular follow-ups, which will enable early identification of the need for adjustments. In the case of neurodevelopmental disorders, specific cognitive developmental milestones may need to be achieved as a prerequisite to introducing and benefiting from some technologies. For example, Light and Drager (2007) highlight the importance of being able to understand true relationships between cause and effect, as the individual will rely on this complex cognitive ability to master the control of their actions on objects that are physically displaced from each other, a skill that is constantly required when using EATs (e.g., actions on keyboard and mouse have effects on screen). On the other hand, as the symptoms and their effect on functional ability change over the course of development, so will the individual’s support needs, but the response to these will need to take into account the demands posed by the context at different stages of the individual’s lifespan (e.g., school vs. employment). What is seen as acceptable in school may no longer be so in college or at work. The degree of support available to use technology may also vary across different environments.

Specific Versus Generalised Cognitive Impairment Whether impairment is specific to a particular area (e.g., memory) or generalised to more areas is another distinction present in most diagnostic categorisation systems such as the DSM and the ICD. Such distinctions function as criteria for differential diagnosis between specific cognitive syndromes or learning difficulties, such as dyslexia (specific reading disorder), and generalised ones, such as learning disability, or amnesia versus dementia. However, and perhaps more importantly from an intervention and technology assessment perspective, these differences also delineate what intervention strategy is likely to be effective. Those with specific cognitive impairment, whether developmental or acquired, are likely to present with limited cognitive deficits and most other skills intact (Harvey, 2012). This will have implications to the individual’s ability to acquire new knowledge or strategies. As Sayko and Tremoulet (2015) point out, often the very cognitive disability that technologies are designed to support may make adoption more challenging. This would be especially the case in individuals with generalised cognitive impairment whose

Chapter 2 • Cognitive Impairment and EAT  31

difficulties, which go beyond the specific ability or function a device is designed to address, may impair their capability to accept, learn and adjust to a device. Few studies have investigated the impact of cognitive impairment on people’s ability to use and benefit from technology (Cullen et al., 2008; Kaye et al., 2008), but initial evidence suggests that it may play an important role. For example, van Walsem et al. (2016) found that technology was more likely to be used by patients in the earlier stages of Huntington’s disease, suggesting that severity of cognitive impairment may be a predictive factor. In contrast, Hughes et al. (2014) found that in the patients’ and carers’ perspectives, ease of set-up and comfort were key factors of an ideal technology. Thus easiness and comfort may pose more of a challenge precisely to those who would in principle benefit the most from technology. Specific deficits can be very severe; however, preserved cognitive ability in other areas is likely to increase the potential to and enable learning (Robertson and Murre, 1999), including the development of strategies that make technology use more likely and effective. It is possible that some of these problems can be addressed through intelligent design and the development of zero-effort technologies (Mihailidis and Boger, 2011); however, features like these may influence acceptability among more able end-users if they are perceived to be specific to assistive technologies (Parette and Scherer, 2004).

Other Neuropsychological Factors The distinction between developmental and acquired, and between specific and generalised cognitive impairments, can give some indication of an individual’s ability to learn and effectively use technology. However, these distinctions cannot be interpreted in isolation. A number of other factors will interact with the medical or psychological diagnosis a person presents, and modulate the extent of its impact on function.

Impaired Self-Awareness Many individuals with neurocognitive impairment are not able to accurately perceive difficulties or changes in their own level of functioning (Chiao et al., 2013; Shany-Ur et al., 2014). These difficulties may arise as a direct result of neurological damage, or they may be a psychological response to disability (Katz et al., 2002). Anticipatory awareness (Crosson et al., 1989), which can be conceptualised as a milder form of lack of awareness, presents as an inability to predict and compensate for one’s difficulties before situations where the abilities required are called upon. In its most severe form, lack of intellectual awareness (Crosson et al., 1989) presents an inability to recognise that a difficulty is even present. Impairments of self-awareness are linked to poorer outcomes (Kelley et al., 2014). If the person does not recognise they have a problem, they are less likely to accept and engage in therapy, and less likely to use compensatory strategies, including EAT (Katz et al., 2002; O’Neill and Gillespie, 2015). In such cases, an initial intervention to facilitate engagement, the use of zero-effort technologies or more intensive support from carers may be required.

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One difficulty – linked to a lack of awareness – that is often described by neuropsychologists working with those with cognitive impairments, is ‘concreteness’. People exhibiting concreteness may be oriented toward the present environment and unable to reflect on their own behaviour, or think symbolically or in abstract terms (Salas et al., 2013). Concreteness is not to be thought of as an impairment to specific cognitive abilities, instead patients that are concrete in their thinking experience the world in a different way to those who can orient their actions from a conceptual point of view. It could be challenging to introduce EAT for patients exhibiting concreteness, especially if the technology requires lengthy training, at moments when the patient is not experiencing the difficulty that the technology is there to support. For example, if a patient has difficulty with memory and is being taught how to use a reminding technology, or even a pencil and paper diary, they may not see the purpose, because they say their memory is fine, perhaps citing upcoming events that they remember. For patients presenting in this way, it may be necessary to be creative in the way that EAT is introduced, and to use techniques that help people become aware of their need for an intervention beyond the immediate moments when they have difficulties (Salas et al., 2013).

Motivation Motivation is one aspect of intentional behaviour. It involves the ability to initiate activity and, alongside self-awareness, it is another important factor associated with outcomes of rehabilitation and technology use (O’Neill and Gillespie, 2017; Wood and Worthington, 2001). Those with motivational deficits may present with difficulties in thinking of things to do or in initiating activities, even when they are able to carry out quite complex activities. Some respond well to environmental cues, they will eat or drink what is put in front of them, but others will need explicit instructions or prompts (Lezak et al., 2004). Understanding the nature of motivation disorders will give an indication of how likely a person is to respond to therapeutic interventions or benefit from different types of technology. Oddy, Worthington and Francis’ (2009) framework for motivational disorders considers the role of arousal and fatigue levels, and six stages of goal-directed activity: (1) idea generation, (2) selection, (3) formulation of a plan, (4) initiation, (5) monitoring and (6) review and reinforcement. When used to guide assessment and formulation, the model can help select the most appropriate interventions, but it may also help a person and their family to understand the nature of their difficulties and avoid the frustration that commonly occurs in the context of these deficits (Oddy et al., 2009). This framework is transferable to the context of an assistive technology assessment, as technology can be employed or designed in such a way that supports and promotes its use. For example, automated verbal instructions can be provided by a device to reduce the detrimental effect that being unable to recall operation instructions may have on initiating use (Cullen et al., 2008). Microprompting software can be embedded to support users to correctly set up and benefit from devices safely (O’Neill et al., 2010). Environmental or wearable technology can make integrated devices aware of the context that surrounds them (O’Neill and Gillespie, 2017), and automatically deliver the required support, prompt or encourage users to engage with the device (Oddy and Ramos, 2013; Ramos et al., 2014).

Chapter 2 • Cognitive Impairment and EAT  33

Plasticity In the context of neurocognitive disorders, the potential for recovery, relearning or compensation will be influenced by a number of factors that have been shown to affect outcome (Berlucchi, 2011; Robertson and Murre, 1999). Generally speaking, older age is associated with poorer outcomes, although early lesions may affect the development of certain brain regions and impede various types of learning (Anderson et al., 2009). Cognitive reserve is a term that has been used to describe the brain’s resistance to insult, apparent as a discrepancy between clinical manifestation and severity of brain pathology (Stern, 2002). Premorbid intelligence and level of education have been used as estimators of cognitive reserve, but other life experiences, such as occupation and bilingualism, are associated with similar protective effects. Cognitive reserve is related to higher connectivity, which leads to better recovery after injury (Robertson and Murre, 1999). Learning and adapting to a new assistive device requires a range of skills, and is thus likely to be influenced by the same factors that affect recovery.

Executive Functioning Executive functioning is the term used to describe various cognitive abilities that underpin goal-directed behaviour, including initiating and planning actions, solving novel problems, correcting errors and selectively attending to relevant environmental stimuli (O’Neill et al., 2013). The study of executive functions has been linked to the operations of the frontal lobes. Lesions in different frontal regions of the brain are associated with different executive difficulties, suggesting that there are a number of specific cognitive processes underlying executive functioning (Stuss and Knight, 2013; Burgess et al., 2000). For example, neurologically impaired patients showing dysexecutive symptoms range in their presentation, from displaying social disinhibition and impulsivity to apathy and difficulty initiating actions, and experiencing problems with long-term planning and goal maintenance. The fact that the term ‘executive functioning’ is used to describe people with a wide range of presentations makes it challenging to assess. Neuropsychological test batteries, such as the Delis Kaplan Executive Function System (Delis et al., 2001) and the Behavioural Assessment of the Dysexecutive Syndrome (Wilson et al., 1997), attempt to cover the main executive processes. These include optimal planning while following set rules, decision making and judgement, novel problem solving, inhibition of irrelevant tasks or stimuli, switching between tasks, initiating tasks, controlling emotions, self-monitoring and sustaining attention. People with executive impairment often find it difficult to sequence actions in an optimal way when carrying out a task, for example, when baking a cake or shopping for items. These two activities have even been used as real-life tests of executive functioning during which people had to plan tasks in a way that would allow them to achieve a goal (bake a chocolate cake or buy items within a budget), and perform the substeps of the task in the correct, planned order (Chevignard et al., 2008; Shallice and Burgess, 1991). During these

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tests, those with executive impairment made significantly more task errors, task omissions and errors of judgement compared to people with no neurological impairment. Executive impairment can impede the uptake of EAT when it is available, but issues with use may be particular to the presentation of the patient with executive impairment. Alderman et al. (2003) described two different patterns of responding when people with executive dysfunction were performing a shopping task in real life. Some patients made many task omissions and failed to achieve the goals set for them (i.e., to buy several items). These ‘task failers’ did not initiate behaviours in line with the goals they were given, but followed the complex rules of the task closely. Other patients displayed contrasting behaviour; disinhibited responding. They performed the tasks but also broke the rules set by the experimenters. These ‘rule-breaking’ patients were highly driven by their environment. Studies of people with brain lesions and frontotemporal dementia have also highlighted an anatomical distinction between apathetic presentations, when damage is located in the dorsolateral prefrontal cortex and anterior cingulate, inferior, middle and superior frontal regions; and disinhibited presentations, where damage or degeneration is present in the posterior cingulate, left medial frontal regions and lateral temporal lobe (Zamboni et al., 2008; Knutson et al., 2014; Burgess et al., 2000). There is therefore neuroanatomic evidence of different processes that can lead to distinct responding, apathetic or disinhibited, after frontal damage. It is an oversimplification to categorise patients with executive impairment into ‘task failers’ and ‘rule breakers’ and in reality there is considerable overlap between these presentations. However, this categorisation offers broad guidance when thinking about the issues that could prevent someone from getting the best use out of EAT. For example, people with an apathetic presentation may fail to initiate the use of technology even when it is available; they might not set an alarm to help them remember an appointment, or fail to call for help when it is needed. If somebody is disinhibited, then they may use EAT inappropriately or too often. For example, continually pressing a call button for support when they do not need assistance. Ownsworth et al. (2015) highlight the processes that support performance monitoring and regulative control components of error self-regulation, which are often impaired by neurological damage. Having difficulty keeping track of what one is doing, and regulating behaviour accordingly, may make it difficult to perform a task with several substeps, such as cooking a meal or carrying out the morning routine. As a consequence, there have been a number of neuropsychological interventions to support people with executive function to perform these types of tasks (e.g., food preparation – Chang et al., 2011; hand washing – Mihailidis et al., 2004; morning routine – O’Neill et al., 2013). There is growing evidence that microprompting assistive technologies are effective for helping people to compensate for executive impairment. Microprompting technologies aim to guide people through a task with several substeps. An example of these technologies is the General User Interface for Disorders of Execution (GUIDE) voice-based prompting system that has been used to support people with executive impairment after vascular dementia to don prosthetic limbs, or to guide people with acquired brain injury (ABI)

Chapter 2 • Cognitive Impairment and EAT  35

through their morning routine (O’Neill & Gillespie, 2008; O’Neill et al., 2013). Another example is COACH, an auditory and visual system designed to help guide people with dementia through hand washing (Mihailidis et al., 2000). A systematic review highlighted the single case experimental design research that has demonstrated the efficacy of microprompting devices (Jamieson et al., 2014) and, in a randomised control trial, GUIDE was shown to be as effective as clinical rehabilitation from human caregivers at supporting morning routines (O’Neill et al., 2017). The literature also highlights the dual utility of guidance technologies depending on the patient’s ability to learn new skills; for some participants, use of the guiding technology over a lengthy period led to habit formation that allowed them to stop using the technology. For others, with more severe memory impairment, the compensatory technology would always be required. Successful use of assistive technologies is rarely effort free and often involves a series of substeps to achieve a goal. This can make it difficult for people with executive difficulties to use EAT successfully without guidance. This is especially true when technology use is novel, where somebody has cognitive difficulties that mean they find it difficult to form a habit or when individuals become distracted during the performance of an activity. In these situations, microprompting technology could be a useful solution. The prosthetic limb donning in the GUIDE study (O’Neill et al., 2008) is an example of cognitive impairments precluding the use of a health technology. Even in cases where somebody does have the capacity to learn the new skill, it can be difficult to provide human support at the right moments for long enough and consistently enough. Technology has the ability to supplement this kind of support in a cost-efficient and effective way.

Memory Memory difficulties can affect technology use in a number of ways. As discussed previously, difficulties with forming new memories can prevent learning from mistakes, which means that unfamiliar technology can only be successfully introduced using errorless learning techniques. Short-term or working memory difficulties can also lead to difficulties with keeping track of a task with several substeps. Prospective memory (PM), the process of creating and acting upon a future intention, can also affect the use of EAT. PM tasks can be categorised in terms of their antecedent. Time-based PM tasks should be completed at a preset time (e.g., take medication at 12 p.m.) and event-based PM tasks should be completed after a certain event, e.g., take medication after lunch (Ellis, 1996). Furthermore, PM tasks can be categorised as pulse or step tasks. A pulse task has to be completed at an ideal moment – either time based (e.g., get to the GP’s office at 2 p.m. for appointment) or event based (e.g., buy milk when passing the shops on the way home from work). Step tasks do not have a specific moment when the task should be completed but usually have a window of opportunity either based on time (e.g., email your colleague between 9 a.m. and 2 p.m.) or an event (e.g., email your colleague while you have internet access on the train at some point during the journey). PM failure is common in people with neurological impairment and is usually conceptualised as the failure to remember a

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future intention at the correct moment, but attention and executive difficulties can also lead to failures. For example, not storing an intention into long-term memory (e.g., when told about an appointment but then being distracted by a friend) and apathy common to people with dysexecutive syndrome can mean that people do not act upon an intention even when it has not been forgotten. PM is one type of memory that mobile technologies are particularly suited to support. Calendar, alarm and reminder apps exist that can be used to set a prompt for a future intention, usually based on a set time. There is good evidence that these types of devices are useful for supporting PM in people with ABI (Jamieson et al., 2014) and multiple sclerosis (Goodwin et al., 2015). However, in the case of mobile reminding software, and other devices that require input from the user, PM difficulties can impact their utility because the user may forget to enter information into the device in the first place. People with memory impairment use many different systems and methods to help support their memory, as well as reminding technology. A study found that 81 people with memory impairments after ABI surveyed, commonly used several strategies and memory aids to support their memory. The most common were leaving things in noticeable places (86%), mentally retracing of steps (77%), asking someone to remind them (78%) and using paper diaries (77%), lists (78%) and calendars (79%). The most common technologies used were mobile phone reminders (38%) and alarms or timers (38%) (Jamieson et al., 2015). Jamieson et al. (2014) carried out a systematic review and showed that technology is more effective than control conditions (non-technological aids and strategies or practice as usual). While the control conditions in the studies included in the review may or may not have included the non-technological methods just described, this finding does highlight the potential advantage to be gained by encouraging people to use assistive technology to help PM. PM aids and strategies could be employed to support the use of any EAT that requires input or the completion of a prior intention from the user. For example, if a communication aid or physical assistance technology needs to be learned over several sessions, then memory strategies can help people to remember to attend a session. Technology could also assist people to adhere to home-based rehabilitation. Lemoncello et al. (2011) described a television-based prompt that reminded patients with dysphagia to adhere to their home-based training programme. The technology led to an increase in adherence to the programme compared to practice as usual. Further strategies might be required to support people’s PM when they are intending to use memory aids. For example, a phone alarm could easily be set to remind somebody to use their calendar or look at their diary. The strategy of leaving things in a highly visible or unusual place could be used when putting up a whiteboard with a weekly plan. Technology can be used to remind about reminding as well; a study investigated the use of ‘unsolicited prompts’ asking ‘Do you need to set a reminder?’, to bring the attention of people with ABI to a mobile phone app that they could use to set reminders. Three participants with severe ABI set more reminders with the prompts than without (Jamieson et al., 2017).

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Attention The human attention system allows us to make sense of our environment. It is excellent at filtering the information that comes through our senses to allow us to focus on the task at hand. The attenuation model of selective attention posits that information that enters the senses is preconsciously either attended to or attenuated (Treisman, 1964) depending on physical properties such as loudness. Attenuated information is processed if it has a low enough activation threshold, which is subjective to the individual for each piece of information. For example, the cocktail party effect means that people attend to their own name spoken in a crowd at a party because that information has more salience to the listener and therefore a lower activation threshold than the other background noises. Thinking about this theory of attention, there are many potential ways in which attention could be impaired. The senses could fail to pick up information, or too much information could meet the activation threshold causing overload. Neurocognitive disorders are often linked with sensitivity to loud noises and dislike of noisy or busy environments (Wilson, 2009; Stiegler and Davis, 2010). There could also be a mismatch between the amount of processed information that enters the working memory and working memory capacity. This may explain the difficulties with dual tasking (e.g., walking and talking) experienced by those with neurological impairment (Evans et al., 2009; Springer et al., 2006). Walking takes up a small amount of the attentional processes and that usually does not impact upon the performance of another cognitive task that requires attention (e.g., understanding verbal information from a person you are conversing with). However, if working memory capacity is reduced, then the amount of information that is processed might be too great resulting in the patient failing to understand what the person is saying and/or walking with an uneven gait (Evans et al., 2009). Clinicians working with people with attention difficulties may categorise patients according to the type of senses for which they experience attention difficulties. For example, people may have a deficit in attending to one side of their vision, or heightened sensitivity to sound. People may also experience difficulties with sustaining attention, being distracted easily by environmental stimuli not relevant to a goal they are trying to achieve. Alternatively, people may struggle to switch attention from one task to another when appropriate. Sohlberg and Mateer (1987) developed a clinical model of attention to describe people’s difficulties and develop rehabilitation to help people overcome attention difficulties. They describe five levels of attention with increasing difficulty: focused, sustained, selective, alternating and divided. Focused, sustained and selective attention describe first discrete responding focused on environmental stimuli, the ability to sustain that attention and maintain a behavioural response consistently and the ability to selectively maintain attention when distractions are present. Alternating attention means being able to shift the focus of attention between tasks that require different cognitive abilities (e.g., composing an email and then answering a phone call). Finally, divided attention describes the ability to perform multiple tasks or task demands at the same time (e.g., composing an email while listening to someone on the phone).

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The use of technology may be difficult if people have impairments with these types of attention abilities. For example, impaired ability to sustain visual attention in the face of distracting stimuli might make it difficult to use, understand information on, and manipulate small screens, especially if they contain large amounts of information. Studies that have investigated the use of personal technology among people with neurological disabilities have described this problem. For example, a focus group study that asked people with brain injury about their use of smartphone technology for setting reminders established the challenges associated with visual attention. Many participants voiced concerns about interacting with a small screen with a lot of information (Jamieson et al., 2015). In recent years, software developers have worked to create solutions to the problems created by small screens. For example, by adapting webpages to fit small screens and enabling the use of the scroll bar so that the text does not become too small to read. However, there is still a trade-off between the amount of information displayed on each screen and the number of screens. For menu displays, research has traditionally supported the use of broad/shallow user interfaces with lots of information presented on a small number of screens, as opposed to narrow/deep structures (with less information on a greater number of screens) that can frustrate users and lead the user to become lost (Lazar et al., 2010). Many widely used reminding apps have also chosen a broad/shallow approach, and employ methods such as scroll bars and pop-up widgets to fit the necessary information on a small number of screens. Research using scheduling software in people with cognitive impairments indicates that this might be the best approach. For example, de Joode et al. (2012) asked 15 people with ABI to complete tasks on a PC calendar in a rehabilitation setting, and compared these to 15 control participants. While the authors did not list the errors made by participants when setting the reminders, they did report that people with ABI made the same types of errors as the control participants, but made them more often, and that people with ABI experienced a higher workload. The authors suggested that more appropriate software for people with ABI should have an interface which presents only a small amount of relevant information at a time and which uses stepwise serial data entry to minimise the burden on working memory and executive abilities. Other studies have established that people with cognitive disabilities have a preference for narrow/deep compared to broad/ shallow interfaces for web search (Hu and Feng., 2015; Lazar et al., 2010). This research indicates that the use of software that presents less information on each screen, and the selection of larger devices, may be preferable for people with visual attention difficulties. One particular problem that can impact patients’ lives and their use of EAT is a difficulty switching from environmental stimuli, or stimuli that is immediately enticing, to stimuli driven by internal goals. For example, if I am sitting working and my phone is flashing next to my computer, I might be tempted to check my messages or social media. However, as my long-term goal is to complete this chapter, I must resist this urge and focus on completing the work. These attention requirements occur frequently when trying to complete longer-term, less immediate goals in the face of environmental distraction; talking to my friend instead of the lecturer when my long-term goal is to pass the exam; and not

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getting caught up in a task I could complete anytime, when it would make me late for a time-dependent appointment. The fact that this goal-dependent sustained or switching of attention can be impaired should be taken into account when designing and providing EAT for people with cognitive impairments. For example, it could be useful to prompt the use of a communication or memory aid each time it is necessary. Additionally, if someone has to learn to use technology over a long period, then it may be beneficial for some to be supported to learn to use technology, and develop use into a habit, through a course of intensive sessions, rather than simply providing the technology and expecting that the person will learn to use it in their own time. Manly et al. (2002) showed that, when performing a task during which the test taker must switch attention between a number of other ongoing tasks, none of which can be fully completed in the time given, sporadically presenting auditory beeps increased the ability of participants with difficulties switching attention to complete more of the set tasks (Manly et al., 2002). This ‘content-free’ cueing was investigated further by Fish et al. (2007), who used a combination of goal management training and a text message saying ‘STOP’ to increase people’s performance on a memory task (Fish et al., 2007). In the goal management training sessions, participants were encouraged to stop and think about what their tasks were during the day, encouraging the switching of attention from current environmental stimuli and current tasks to goal-directed tasks. The ‘STOP’ message was associated with thinking about goals and the eight text messages sent at random times during the day acted as a trigger for this attentional switch. The text messages were successful at improving performance on the memory task for 20 participants with brain injury. These examples show the role that an assistive technology intervention can have on the performance of everyday tasks, and these everyday tasks could include the use of EAT or training with EAT.

Implications for Technology Use We have outlined different cognitive difficulties that might impact the use of EAT. However, when using EAT as a clinical tool the cognitive abilities of the user are just one factor to consider. When discussing the use of assistive technology for cognitive impairment, O’Neill and Gillespie (2014) refer to the neuro-socio-technical model that takes into account the myriad influencers in the environment, the users themselves and the technology. Importantly, these aspects cannot be fully understood individually (O’Neill & Findlay, 2014). With this in mind we will now look at some of the literature that has attempted to investigate the use of EAT by people with cognitive impairments in context, and discuss the issues that clinicians should bear in mind when working with clients who use EAT, and when introducing technology as a clinical intervention for a client. The Technology Acceptance Model (TAM), developed to describe technology use in the general population, is relevant to discuss when considering the uptake and continued use of EAT by people with cognitive impairments (Davis, 1989). Two main concepts in TAM are perceived usefulness and the perceived ease of use that influence the attitude of the

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person toward the technology, which, in turn, influences their intention to use it and its eventual uptake. Venkatesh et al. (2003) added to TAM in the Unified Theory of Acceptance and Use of Technology, the users’ expectation about their performance, expectation about the effort required to successfully use the technology, their social influencers (e.g., family members who might encourage their use) and facilitating conditions in the environment (e.g., needing to learn technology for work). These factors have been found to reliably predict users’ intention to use the technology in the future, as well as their actual use of that technology. While Venkatesh et al.’s (2003) model was not developed through work in people with cognitive difficulties, or those using assistive technologies, the principal findings do offer some insights into what is likely to impact EAT use by people with cognitive impairments. For example, perceived usefulness and perceived need have been mentioned in several studies gathering stakeholders’ attitudes toward EAT (McGee-Lennon et al., 2011; Jamieson et al., 2015; Baldwin et al., 2011; Dawe, 2006), and these two concepts map into the problems arising from poor self-awareness. Facilitating conditions and social supports that encourage the use of technology have also been noted as important (Gibson et al., 2014; Hart et al., 2003). Some studies have also noted that anxiety and negative feelings around one’s own ability to use everyday technologies can prevent engagement with EAT (Jamieson et al., 2017; Nygård and Starkhammar, 2007). A study has found that frustration and negative emotional reactions to making mistakes with technology are more prominent in people with cognitive impairments (de Joode et al., 2012). Given the costs associated with producing, providing and training people with EAT, and the potential cost-benefit of successful implementation of EAT in clinical practice (Oddy and Ramos, 2013), it is understandable that there is a great deal of interest in what influences uptake, continued use and acceptance. There has been work investigating people with cognitive impairments and their use of EAT. This has mostly been focused on the use of devices to compensate for cognitive impairments (Scherer et al., 2005; Hart, 2009; de Joode et al., 2010; Maynard et al., 2015). However, there is some work that has looked at the uptake of EAT to support difficulties not primarily caused by cognitive impairment among people with cognitive impairments which are comorbid to the impairments targeted by EAT (Cullen et al., 2008; van den Berg et al., 2012). Other studies have investigated the use of everyday technologies by people with cognitive impairment (Carey et al., 2005; Gell et al., 2013). There are also relevant contributions from the literature investigating telecare and assistive technology for older people in the general population that can help with understanding the use of EAT in situations where cognitive impairment is a factor (McGee-Lennon et al., 2011; Clark et al., 2011). In this section we will summarise some of the themes that arose consistently in these studies, and discuss some of the implications for practitioners.

Seeing a Benefit Perceived usefulness is a key component of TAM, and this has also been found to be vital in the uptake of EAT. When studying older people’s attitudes to supporting technology

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use, McGee-Lennon et al. (2012, p. 11) reported that ‘Technologies are often perceived as acceptable only when they offer a noticeable benefit to the user.’ Caregivers communicated that technologies are often prescribed to the users without justification or explanation of their potential benefits. Studies with people with brain injury have shown that people must experience the effects of their impairment before feeling the motivation to engage with EAT (Baldwin et al., 2011; Jamieson et al., 2015). This can often be an issue if people are highly supported to perform everyday tasks and may not see the full need for EAT until that support is removed. This can be a particular problem in neurorehabilitation when an individual transitions between intensive inpatient care and less intensive community support because the intensive care environment is the ideal setting to introduce, train and tailor the EAT intervention. However, because of the high level of support in this environment, the individual may not see the need for the technology until after they move into community care, and so may not engage with the technology while in the ­rehabilitation unit. This issue is particularly relevant for people with cognitive impairments because they may have poor self-awareness of the difficulties that make the technology necessary. For example, in an in situ study with people with severe memory impairments living in a rehabilitation centre, participants reported not needing a mobile phone reminder even when staff reported that they forgot to do a number of important everyday activities (Jamieson et al., 2017). One solution to this problem might be to illustrate the benefits of using the technology. For example, a caregiver speaking in a focus group about smartphone reminder apps for memory impairment (Jamieson, 2016, p. 118) said that they used a memory aid on a smartphone and thought this might influence their family member with brain injury: ‘I think initially we’d be quite happy to use that. I think it would introduce again that curiosity you see where he’d eventually ask – how did you do that? I’d like to do that myself. So yeah I think it would be good way in to introduce it to carers who show how to do it and then it gets passed along…’ In neuropsychological rehabilitation, one of the roles of the clinician is to help somebody see the need for rehabilitation and become ready to engage in an intervention (Van den Broek, 2005; Wilson, 2009). This is contrasted with introducing an intervention as soon as rehabilitation is available to the client, regardless of whether or not they desire or see the need for that intervention. It has been claimed that this is one of the key reasons why neurorehabilitation sometimes fails (Van den Broek, 2005), and this is likely also to be the case for the introduction of EAT.

Frame of Reference and Stigma Another theme that has been described consistently in studies garnering the opinions of EAT stakeholders is the stigma that using technology can bring. For example, people with cognitive impairments from different aetiologies have stated that they did not want other people to see them using assistive technology for fear that they would think badly of them (Baldwin et al., 2011; Dawe, 2006; Bharucha et al., 2009).

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Other studies have found that the way in which technology is introduced to the patient and the context around its implementation is an important factor. For example, an older user said the following in an interview study about telecare and home technologies (McGee-Lennon et al., 2011, p. 11): ‘It is about the language we use in terms of technology… when there was a recent publicity about granny tagging and stuff, you know, about technology that was there to help people but because they use it to tag criminals, if you like, it was kind of seen as a very negative, you know if we were going to tag old people.’ In this study with healthy older adults, the participants were concerned about the way technology was introduced, and their responses highlight the importance of the users’ perceptions of the technology. The way technology is introduced was also an important theme in a study that Baldwin et al. (2011) did in a group of people with memory impairments after brain injury. In this study, participants stated that they felt that people who understand what memory impairment is like, rather than a therapist, should be the ones introducing technology to others (Baldwin et al., 2011). The stigma around use is often keenly felt by those with cognitive impairments. People may have cognitive impairments that are not visible and so they would not want to use a device that makes this impairment become visible to others (Baldwin et al., 2011). Cognitive decline in neurodegenerative disorders is associated with issues around autonomy and self-efficacy, which technology can exacerbate if not introduced in the right way (Heerink et al., 2010). Another negative attitude that has been communicated about assistive technology is that people worry that they may become overdependent on technology and that this would exacerbate cognitive decline or reduce cognitive abilities further (Baldwin et al., 2011; Rosenberg et al., 2012). Some stakeholders have communicated that mainstream technology was less likely to be stigmatised, or make people worry about stigmatisation than specialist equipment (McGee-Lennon et al., 2012; Clark and McGeeLennon, 2011). These issues illustrate the important role of practitioners and carers when introducing EAT, not only to establish that the patient is ready to engage with an intervention, but also to frame the use of the technology in such a way that it is not associated with declining functional independence. In a focus group discussing smartphone reminding technologies, a carer of someone with memory impairment after a brain injury described a solution to this problem: to use the technology themselves to normalise it for the person they cared for (Jamieson et al., 2015). While it might not always be possible for a caregiver to also use EAT that is supplied for a patient, this suggests that technology that harnesses peer support, and is social, might help increase acceptability in situations where it would otherwise have been associated with negative aspects of disability.

Lack of Personalisation Research into the uptake of assistive technology has emphasised the importance of technology catering to the needs of the individual for it to be successful. A number of studies have noted that some people with cognitive impairments are reluctant to use technology

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and feel that ‘tech is just not me’ (Baldwin et al., 2011; Rosenberg et al., 2012; Hammel et al., 2015). It could be difficult to introduce technology to people with this belief and it may be that an alternative way of intervention or support can be found. Conversely, keeping up with new technology can be important. In case of those with dementia supporting the continued use of technology has been reported to be important to allow them to maintain their self-image (Rosenberg et al., 2012). Furthermore, integrating technology use with existing habits is crucial for acceptance from people with dementia (Rosenberg et al., 2012) and personalising technology based on preferences is important for acceptance of technology from healthy older users (McGee-Lennon et al., 2011). However, it should be noted that some older users also felt that personal preference should be overruled by care needs if required (Clark and McGee-Lennon, 2011). As well as being personal to patients’ attitudes and care needs, technology has to fit unobtrusively into people’s lives to be accepted. This requirement places as much importance on the technology fitting into the user’s sense of self, and internal monologue about their life and difficulties, as it does on functional utility. Researchers that have reported this requirement draw a distinction between somebody being given a tool and told how to use it, and discovering something for themselves, or even appropriating a tool for their needs even when it was not originally meant for that purpose (McGee-Lennon et al., 2011; Imperatore and Dunlop, 2015). Encouraging and building this self-autonomy may actually be a crucial advantage of technology because using technology as a tool to help independence may make one feel more autonomous than if the exact same support was coming from a human. Contrast the feelings of having a navigating passenger, often linked to the negative term ‘back-seat driver’, with using a sat-nav to navigate in a car. While we would say that we found our destination with the help of the navigator when it was a human in that role, it would be rare to acknowledge the sat-nav in the same way; it is seen as a tool that helped us do the job independently. Indeed, verbal prompting has been found to be a frequent antecedent to aggressive behaviour (Alderman et al., 1997). An illustrative example of this in clinical care has been communicated to one of the authors of this chapter (MJ) in a study that is ongoing. An occupational therapist described the use of mobile phone texts to prompt a client with memory and executive functioning difficulties following a brain injury. He didn’t like when we prompted his self-care. He hated when his family prompted him. So his brother set up the messages and sent them. His brother would send the messages and change them every so often but he didn’t know where they were coming from…so it took away that external pressure of a therapist telling you to do it, a support worker telling you to do it, a family member telling you to do it – it was just a reminder. That worked well because he’d come out and say, ‘oh my phone told me to do this!’ The issue of personalisation of technology to fit with the desires and needs of clients is important for people with cognitive impairment because there is huge variability between people with different disorders and within groups with the same

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aetiology (e.g., brain injury). Issues with emotional regulation and readiness to engage with rehabilitation mean that even those with very similar functional difficulties could have different responses to the same EAT intervention. It is also possible to imagine future technology being able to adapt to the needs of the user by taking into account information about the client, and by sensing the environment. This raises important ethical issues.

Use of Technology for Children and Young People Young people with neurological impairments, either developmental or acquire, are likely to benefit from assistive technology. For example, the retrospective memory aid SenseCam has been shown to help both adults and children recollect personal events (Pauly-Takacs et al., 2011), and prompting technology can help compensate for PM, which is often impaired for both children and adults with ABI (Krasny-Pacini et al., 2015). However, some of the issues that influence technology use are specific to children and young people. Brain injury can mean that children who initially seem to have few deficits can experience delayed onset and later arrest of development because, for example, they miss out on the executive function and memory development and improvement that characterises typical development (Eslinger et al., 1992). Children with ABI may therefore fall further and further behind their typically developing classmates. This highlights the need to adapt to changing expectations when using technology with this age group. Furthermore, the fact that children are dependent on parents, teachers and other adults means that it is difficult to intervene without the active and consistent participation of the child’s ‘everyday people’ (Krasny-Pacini et al., 2014). A study of school children with cerebral palsy reported that assistive technologies, particularly those that are clinically prescribed, run the risk of being greeted with ambivalence and even exacerbating disability. However, technology can also enhance selfhood and participation, especially if techniques to improve engagement are used such as turning learning to use a device into a game (Øien et al., 2016). Another unique issue to supporting young people with cognitive impairment is their success in further education and achieving employment after obtaining qualifications. A number of factors influence employment outcomes, including cognitive challenges (Nardone et al., 2015). Technology can help with specific abilities required at college and work, including scheduling work and remembering deadlines. Technologies specific to an educational or employment context might be particularly useful for young people with neurological impairment.

Ethical Approaches to Cognitive Support Ethical considerations are particularly important to consider when thinking about using technology in people’s homes, or when helping to support people who may not have the ability to consent to the treatment being provided. It is also important to consider the moral and ethical implications of the world view or perspectives that are driving the research and development of EAT.

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Much assistive technology that has been developed to help people with cognitive impairment has focused on the compensation of impairments to increase functional independence. Some researchers and clinicians have questioned whether or not this is appropriate for certain groups. For example, the critical dementia perspective questions the aim of attempting to compensate for impairments in the face of declining cognitive abilities, which fundamentally alter the person’s place in the world. It is claimed that research into interventions to restore function after dementia place a great deal of importance on cognitive ability and suggest that we should look beyond cognitive ability when thinking about how individuals with dementia contribute toward society. One paper detailed how assistive and supporting technologies might be designed from this perspective, giving the example of an art project during which a person with severe dementia was filmed creating an artwork. The purpose was not to improve her cognitive or functional abilities, but to allow family members to connect with her and gain a deeper understanding of her experiences (Lazar et al., 2015). It is also true that in neurorehabilitation there is often a focus on the cognitive domains that clinical interventions can improve. As mentioned in the previous section, designers should be careful when developing ‘one-size-fits-all’ solutions that lack personalisation and refrain from offering interventions to clients prior to their readiness for neurorehablitation. There is a place for technology that aims to help people retain, compensate for or retrain cognitive and physical abilities affected by developmental, acquired or progressive neurocognitive impairment. However, clinicians and researchers should think critically about who and what EAT is for. Further ethical considerations have been voiced by participants in research studies, especially when covering topics of remote sensing, covert data collection and the reduced or declining capacity for the individual to consent (van den Heuvel et al., 2012; Zwijsen et al., 2011; McGee-Lennon et al., 2011). There are a number of conflicting issues, such as safety versus privacy when introducing sensing technologies into dementia care, or between encouraging autonomy in medical care versus ensuring that medication is taken at the right time. For example, prompting technology might be able to prompt somebody to take medication on time, but this could be dangerous if this technology stops working and people have not developed the skills to self-medicate, and do not have carers who can help. The ethical issues explored in this research are important when considering both the design and the clinical provision of EAT. It is an area that highlights the need for a multidisciplinary approach, in which the needs and desires of potential stakeholders are factored into the design of technologies. Without this, we risk prescribing EAT that is not useful and may be unethical.

Conclusions Cognitive impairment must be taken into account when using EAT to help patients live independently and safely. In this chapter we described the characteristics and course of different forms of cognitive impairment and discussed the impact that impairment in specific cognitive domains

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may have on the use of EAT. Clinicians, designers and researchers all have a role to play to improve the cognitive accessibility of all types of technologies. The rapid increase in personal technology use, and the improvement in affordable technologies with health application, makes this field more important today than ever before.

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Harvey, P.D., 2012. Clinical applications of neuropsychological assessment. Dialogues in Clinical Neuroscience 14 (1), 91–99. Heerink, M., Kröse, B., Evers, V., Wielinga, B., 2010. Assessing acceptance of assistive social agent technology by older adults: the almere model. International Journal of Social Robotics 2 (4), 361–375. Hu, R., Feng, J.H., 2015. Investigating information search by people with cognitive disabilities. ACM Transactions on Accessible Computing (TACCESS) 7 (1), 1. Hughes, A.-M., Burridge, J.H., Demain, S.H., Ellis-Hill, C., Meagher, C., Tedesco-Triccas, L., et al., 2014. Translation of evidence-based Assistive Technologies into stroke rehabilitation: users’ perceptions of the barriers and opportunities. BMC Health Services Research. 14 (1), 124. https://doi. org/10.1186/1472-6963-14-124. Imperatore, G., Dunlop, M.D., October 2015. An investigation into appropriation of portable smart devices by users with aphasia. In: Proceedings of the 17th International ACM SIGACCESS Conference on Computers & Accessibility. ACM, pp. 323–324. Jamieson, M., 2016. Investigating Assistive Technology to Support Memory for People with Cognitive Impairments (Doctoral dissertation). University of Glasgow. Jamieson, M., Cullen, B., McGee-Lennon, M., Brewster, S., Evans, J., 2015. Technological memory aid use by people with acquired brain injury. Neuropsychological Rehabilitation 1–18. Jamieson, M., Cullen, B., McGee-Lennon, M., Brewster, S., Evans, J.J., 2014. The efficacy of cognitive prosthetic technology for people with memory impairments: a systematic review and meta-analysis. Neuropsychological Rehabilitation 24 (3–4), 419–444. Jamieson, M., O’Neill, B., Cullen, B., Lennon, M., Brewster, S., Evans, J., May 2017. ForgetMeNot: active reminder entry support for adults with acquired brain injury. In: Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems. ACM, pp. 6012–6023. Katz, N., Fleming, J., Keren, N., Lightbody, S., Hartman-Maeir, A., 2002. Unawareness and/or denial of disability: implications for occupational therapy intervention. Canadian Journal of Occupational Therapy 69 (5), 281–292. Kaye, H.S., Yeager, P., Reed, M., 2008. Disparities in usage of assistive technology among people with disabilities. Assistive Technology 20 (4), 194–203. Kelley, E., Sullivan, C., Loughlin, J.K., Hutson, L., Dahdah, M.N., Long, M.K., et al., 2014. Self-awareness and neurobehavioral outcomes, 5 Years or more after moderate to severe brain injury. The Journal of Head Trauma Rehabilitation 29 (2), 147–152. Knutson, K.M., Monte, O.D., Raymont, V., Wassermann, E.M., Krueger, F., Grafman, J., 2014. Neural correlates of apathy revealed by lesion mapping in participants with traumatic brain injuries. Human Brain Mapping 35 (3), 943–953. Krasny-Pacini, A., Limond, J., Evans, J., Hiebel, J., Bendjelida, K., Chevignard, M., 2014. Context-sensitive goal management training for everyday executive dysfunction in children after severe traumatic brain injury. The Journal of Head Trauma Rehabilitation 29 (5), E49–E64. Krasny-Pacini, A., Servant, V., Alzieu, C., Chevignard, M., 2015. Ecological prospective memory assessment in children with acquired brain injury using the Children’s Cooking Task. Developmental Neurorehabilitation 20 (1), 53–58. Lazar, A., Demiris, G., Thompson, H.J., 2015. Involving family members in the implementation and evaluation of technologies for dementia: a dyad case study. Journal of Gerontological Nursing 41 (4), 21–26. Lazar, J., Feng, J.H., Hochheiser, H., 2010. Research Methods in Human-Computer Interaction. John Wiley & Sons, UK. Lemoncello, R., Sohlberg, M.M., Fickas, S., Prideaux, J., 2011. A randomised controlled crossover trial evaluating Television Assisted Prompting (TAP) for adults with acquired brain injury. Neuropsychological Rehabilitation 21 (6), 825–846.

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Functional Posture Jane Chantry, Sarah Crombie CHAI L EY CL I NI CAL S ERVI CE S , S U S S E X C O MMU N I T Y N H S F O U N D AT I O N T R U S T, EAST SUSSEX, UNITED KINGDOM

CHAPTER OUTLINE Introduction��������������������������������������������������������������������������������������������������������������������������������������� 53 What Is Posture and Postural Control?������������������������������������������������������������������������������������������� 55 The Postural Control System������������������������������������������������������������������������������������������������������������ 55 The Neural System������������������������������������������������������������������������������������������������������������������������ 56 What Is Muscle Tone?������������������������������������������������������������������������������������������������������������������� 57 What Is a Reflex?�������������������������������������������������������������������������������������������������������������������������� 59 The Musculoskeletal System�������������������������������������������������������������������������������������������������������� 60 The Sensory System���������������������������������������������������������������������������������������������������������������������� 60 Feedforward and Feedback Mechanisms������������������������������������������������������������������������������������ 61 Impairment of Postural Control������������������������������������������������������������������������������������������������������� 62 What Is Postural Management?�������������������������������������������������������������������������������������������������� 62 What Is a Functional Posture?���������������������������������������������������������������������������������������������������������� 64 Assessment of Postural Ability for Functional Positioning Solutions������������������������������������������� 65 Gathering Your Information�������������������������������������������������������������������������������������������������������� 66 Medical Conditions Affecting Posture���������������������������������������������������������������������������������������� 66 Psychological Factors Impacting Posture������������������������������������������������������������������������������������ 66 Social and Environmental Factors Affecting Posture����������������������������������������������������������������� 67 Physical Assessment���������������������������������������������������������������������������������������������������������������������� 67 Using Measurement Tools������������������������������������������������������������������������������������������������������������ 74 Case Studies�������������������������������������������������������������������������������������������������������������������������������������� 75 Alan’s Case Study (Adult)������������������������������������������������������������������������������������������������������������� 75 John’s Case Study (Paediatric)������������������������������������������������������������������������������������������������������ 76 References����������������������������������������������������������������������������������������������������������������������������������������� 78

Introduction The ability to control our body’s position in space is fundamental to everything we do; even the smallest of tasks we undertake requires a degree of postural control and is therefore essential for successful functioning in everyday life. Children and adults with complex Handbook of Electronic Assistive Technology. https://doi.org/10.1016/B978-0-12-812487-1.00003-X Copyright © 2019 Elsevier Ltd. All rights reserved.

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neurological disabilities frequently display significant problems with their ability to control their posture and movements. For example, they may have difficulties maintaining a stable, sitting position without someone to hold them or the need to use their upper limbs for support. This means that in the sitting position, they are unable to use their hands for functional activities. However, provision of suitable equipment can assist in promoting a more comfortable, stable body position from which to achieve optimum functional ability (Pountney et al., 2004; Pope, 2007). Promoting posture for function can be viewed within the conceptual framework of the International Classification of Functioning, Disability and Health (ICF) (WHO, 2001, 2007). A person’s health condition may mean that they have body structures or functions such as contractures or deformities, abnormal muscle tone or gastrointestinal reflux, which affect their ability to maintain and control their posture. When considering how best to meet the needs of the child or adult, this framework helps us to consider the many factors impacting on the outcomes of any postural intervention. It will be important to consider what aspects of the person’s body structure or function are impacting on a functional posture, what activities the person is aiming to achieve through any change in posture and their goals for participation (Fig. 3-1). Personal factors such as choice of aesthetics may be important to the person (Goodwin et al., 2018), and factors such as family lifestyle may influence whether the equipment will be useful. Environmental factors need to be considered to ensure that the equipment can be used within the chosen environment (Huang et al., 2009); for example, there may not be sufficient space for a large powered chair within a home environment. With children, there may be additional factors such as parental choices, differing environments such as school or nursery and training of school staff, which may affect postural solutions. Without these considerations, the person may be provided with postural equipment that may be sufficiently comfortable or supportive,

Health condition, e.g., cerebral palsy

Body Structure and Function, e.g., spasticity limiting motor control of left upper limb, scoliosis

Activity, e.g., driving a powered wheelchair

Personal Factors, e.g., child’s behaviour

Participation, e.g., Playing wheelchair football

Environmental Factors, e.g., used in school only, home too small

FIGURE 3-1  Diagram adapted from International Classification of Functioning, Disability and Health (WHO, 2001).

Chapter 3 • Functional Posture  55

but not promote the function, participation or activities they desire. Provision of postural solutions for optimum function is therefore akin to a jigsaw puzzle; each piece is important to build the bigger picture and to achieve a successful outcome for the person. This chapter will first describe what is meant by the terms ‘posture’ and ‘postural control’, and which mechanisms impact on the achievement of an effective and functional posture. It will then explain why children or adults with neurological impairment may have difficulties with postural control. It goes on to explain what postural management comprises and the importance of promoting postural control and a functional posture. It discusses the important factors in the assessment process when considering a solution to meet the needs of a person’s posture and lastly discusses two case studies to demonstrate possible solutions for functional positioning.

What Is Posture and Postural Control? The term posture can simply be defined as the position of the body, or of body parts, in relation to each other and their position within space (Ham et al., 1998; Hadders-Algra, 2008). Our posture is continually changing as we shift in and out of varying symmetrical and asymmetrical positions, to complete and move between functional tasks and activities, in response to environmental factors and to remain upright against gravity. Postural control is the ability to remain upright, balanced and maintain control of a state of balance while performing a specific task or activity (Latash, 2008). For an individual with fully functioning sensory, musculoskeletal and nervous systems, this level of control happens almost completely at an autonomic level, and postural adjustments and changes, on the whole, occur without any conscious reaction or thought. However, it has been shown that there is a correlation between the complexity of a task being performed and the increase in attention required to maintain postural control (Reilly et al., 2008; Brauer et al., 2002). To understand why children and adults with complex neurological disabilities have such significant problems with their posture, we need to understand the mechanisms that provide postural control.

The Postural Control System There are two key functional goals of the postural control system: First, postural orientation; the ability to maintain the active alignment of the head, trunk and body segments with respect to gravity, the supporting surface and information provided through visual and internal feedback systems (Horak and Macpherson, 2011). Second, postural equilibrium/stability; the coordination of movement strategies to stabilise the centre of body mass during both self-initiated and externally triggered disturbances of stability such as required during a specific task or activity (ShumwayCook and Woollacott, 2001).   

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Somatosensory inputs Visual inputs Vestibular inputs

Postural Control Integrated Central nervous system

Muscle responses Muscle strength Range of motion

FIGURE 3-2  Factors influencing postural control.

This multifaceted and dynamic control system relies on a complex interaction between musculoskeletal, neural and sensory systems (Fig. 3-2).

The Neural System An intact central nervous system (CNS) is key to motor and postural control systems. The CNS is made up of the brain and the spinal cord and acts as the control centre for the body, integrating information and input from sensory receptors and controlling motor output in response (Fig. 3-3). The previously believed concept that posture is primarily the result of a reflexive activity (a motor response to a sensory stimulus that occurs spontaneously and automatically at a spinal cord level within the CNS) is now widely recognised to be incorrect. Postural control is a much more complex process involving virtually the whole of the nervous system (Hadders-Algra and Carlberg, 2008). The nervous system is made up of the following: • The spinal cord where simple reflexes occur, including automatic and stereotype reflex movements, and the peripheral execution level of movement. Central pattern generators for repetitive motor activities such as locomotion occur here. • The brain stem supports the body against gravity and generates gross, stereotyped movements and maintains equilibrium. • The basal ganglia plays an essential role in the initiation of most activities and the suppression of unwanted movements. It incorporates a number of feedback loops. • The cerebrum is the main centre for the control of voluntary movement, particularly complex motor activities such as the manipulative movement of the hand.

Chapter 3 • Functional Posture  57

Cerebrum

Brain Stem Cerebellum

Spinal Cord

FIGURE 3-3  Diagram of the central nervous system.

• The cerebellum is important for correcting posture and smoothing out movements. The medial zone in particular is involved in controlling posture and equilibrium, influencing the axial and girdle parts of the body, as well as the organisation of motor synergies (coordinated multijoint movements) (Latash and Hadders-Algra, 2008).    Each system combines to provide a base of axial stability for more distal mobility and skilled or refined coordinated limb movements. Damage to the brain and neural system often interrupts the flow of messages along various nerve pathways. This disruption of signals can cause changes in muscle tone, movement patterns and the retention or reemergence of primitive reflexes (Bobath, 1990; Carr and Shepherd, 2014).

What Is Muscle Tone? All muscles maintain a level of residual tension or resistance to stretch, even when relaxed and at rest; this enables them to respond and move quickly and easily when required. Without this tension, we would not be able to maintain and control an upright posture and resist the force of gravity; conversely, too much tension can lead to movement difficulties and other problems. This tension is known as muscle tone and is ultimately controlled by impulses from the brain and nervous system and occurs through a mechanism known as the stretch reflex. When a muscle is stretched, an impulse is generated in the muscle spindle and is transmitted via the sensory neuron to the grey matter of the spinal cord. Here the sensory neuron synapses (connects) with the motor neuron, and the transmitted impulse results in muscle contraction. While agonist muscles (prime movers) contract in response to stretching, antagonist (opposing) muscles must relax. Their relaxation is brought about via an

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inhibitory neuron within the spinal cord. Disturbances in muscle tone occur when there is an imbalance in the excitatory and inhibitory input to motor neurons, which is caused by damage to the spinal cord and/or the CNS. This damage then results in an imbalance between messages from the nervous system to the muscles causing altered excitability of this stretch reflex (Britton, 2004). Commonly seen disturbances in muscle tone include: Hypotonia or low muscle tone, where there is too little muscle tone at rest and muscle and joints may feel ‘floppy’. This is due to an abnormally low resistance to stretch as a result of too much inhibition in the stretch reflex arc. This may result in instability and lack of control of movement. For example, a person with low muscle tone in their trunk may have problems sitting upright for any length of time and may adopt a slouched posture (Fig. 3-4). Hypertonia or high muscle tone is where there is too much tension in the muscles and an abnormally strong resistance to stretch as a result of too much excitability in the stretch reflex arc. The muscle may seem tense and contracted even when resting. Spasticity is a condition where muscles are resistant to rapid stretching and results in muscle hypertonia and involuntary muscle contraction (Lance, 1990; Barnes, 2001; Ibuki and Bernhardt, 2007). Often it presents in specific muscle groups and can result in abnormal movement patterns and posturing. This can be seen in a common pattern of spasticity in the upper limb following a stroke (Fig. 3-5). Dystonia is a movement disorder in which involuntary sustained or intermittent muscle contractions cause twisting and repetitive movements, abnormal postures or both (Sanger et al., 2010).   

FIGURE 3-4  Child sitting on a box with a slouched posture demonstrating low muscle tone (Pountney et al., 2000).

Chapter 3 • Functional Posture  59

FIGURE 3-5  Diagram of a typical pattern of spasticity seen in a person after a stroke: note the flexion and adduction of the shoulder, flexion of the elbow, wrist and fingers.

These contractions resulting in torsion and twisting movements can be very painful. Similar to spasticity, dystonia may be focal (confined to one particular muscle group) or more generalised (involving multiple body segments and muscle groups).

What Is a Reflex? A reflex consists of a motor act that is elicited by a specific sensory input. Primitive reflexes appear at birth and become integrated as the motor system develops and more complicated movements emerge (Green, 2004). The primary purpose of the postural reflexes is to maintain a constant posture in relation to a dynamic external environment. For example, the postural reflexes need to develop and react to the presence of gravity due to the earth’s gravitational field. When the CNS is damaged, these primitive reflexes can again dominate motor activity and contribute to abnormal patterns of movement and posturing. Primitive reflexes that may be retained or reemerge as a result of damage to the CNS influencing an individual’s postural control are: Symmetrical tonic neck reflex. This is demonstrated by increased flexor tone in the upper limbs and extensor tone in the lower limbs when the neck is flexed, and increased extensor tone in the arms and flexor tone in the legs when the neck is extended. Asymmetrical tonic neck reflex (ATNR). This is when rotation of the neck and head causes extensor tone in the limbs on the face side and flexor tone in the limbs of the skull side. Positive support reaction. Pressure applied to the ball of the foot stimulates a full limb extensor pattern.

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Tonic labyrinthine reflex. This is a primitive and pathological reflex that is seen in totally involved individuals due to abnormal simultaneous contraction of extensors and flexors in the whole body. A flexed posture is exaggerated when the person is placed in the prone position, in which contraction of the flexors is predominant. An extended posture is exaggerated in the supine posture, in which contraction of the extensors is predominant (Shumway-Cook and Woollacott, 2001).

The Musculoskeletal System The musculoskeletal system provides form, support, stability and movement to the body, which are all inherently required for postural control. It is made up of bones, muscles, joints, cartilage, ligaments and other connective tissue; the integrity of these components is essential for their successful functioning. Problems with the musculoskeletal system could be congenital (i.e., present from birth) such as is seen in a condition called arthrogryposis multiplex congenita, a condition where contractures of the limbs are present from birth. Otherwise, it could be as a result of an acquired or developmental condition or disease such as multiple sclerosis, brain injury or muscular dystrophy, where neurological damage may cause the muscle to become denervated (loss of nerve supply) and immobile. Conversely, the nerve supply to the muscle might be overexcited and cause a limb to become immobile due to being in a constant state of hypertonia or spasticity. The long-term immobility of a joint or muscle can lead to muscle wasting, loss of muscle bulk, shortening of muscle tissue and eventually contracture of the muscle or joint. This loss of muscle strength, joint range of movement or muscle length will all negatively impact on the body’s ability to sustain balance and postural control.

The Sensory System The sensory system provides information to the CNS. The key sensory systems involved in postural control are: The somatosensory system: Proprioceptive, cutaneous and joint receptors provide information on the position of the body and the forces and pressures acting on the body in relation to the supporting surfaces. They also provide information about the relationship of body segments to one another. Proprioceptive sensory organs are located in muscles and tendons, or within the connective tissues (ligaments and capsules) of joints. These feed into the postural control system information regarding the status and function of the musculoskeletal system, with a constant flow of information to the spinal cord, the cerebellum and the brain. The most important sensory nerve endings for controlling the muscular system are the muscle spindle fibres and the Golgi tendon organs. Muscle spindles are found in the belly of skeletal muscles and provide the CNS with information regarding the length of the muscle and whether it is in a state of stretch. The Golgi tendon organs are found within the tendons that attach the muscle to bone and provide the

Chapter 3 • Functional Posture  61

CNS with information about the tension of the muscle and whether it is in a state of relaxation or contraction (Purves et al., 2004). The vestibular system: This provides the CNS with information about the position and movement of the head with respect to gravity and inertia forces. There are two types of receptors: •  Semicircular canals, which sense angular acceleration of the head such as in imbalance trips and falls. •  The otoliths, which sense linear position and acceleration and mainly respond to slow head movements such as during postural sway (Saladin, 2011). The visual system: The visual field and pathway are important regulators of postural control. Visual input provides information regarding the position and motion of the head with respect to surrounding objects. It helps to fixate the position of the head and upper trunk in space, primarily so that the centre of mass of the trunk maintains balance (Hansson et al., 2010).

Feedforward and Feedback Mechanisms The human body, in its structure, is inherently unstable and while maintaining balance and equilibrium are important, a static stable position is of relatively little use for function. A dynamic postural control system is required to make continual and adequate adjustments and meet functional demands. In response to ever-changing conditions, these adjustments are known as anticipatory postural adjustments and compensatory postural adjustments and work on a feedforward and feedback basis (Massion et al., 2004). Anticipatory postural adjustments: a feedforward system – Postural adjustments are anticipated and predicted and anticipatory forces are provided to minimise the expected disturbances. Compensatory postural adjustments: a feedback system – Disturbances in posture are detected by the sensory systems and are corrected immediately by postural reflex mechanisms called righting reactions (Fig. 3-6). In summary, postural control is a complex multisystem and dynamic mechanism influenced by: • The integrity of the nervous system. • Sensory processing. • Length-associated changes in muscles. • Selective control of muscle for posture and movement. • Bone and joint formation. • Biomechanical forces. • The environment. • The complexity of task.    Children and adults who have a developmental, neurological, motor or body structural impairment may therefore experience difficulties with their postural control.

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Central Command

Limb Movement

Feedforward for ancipated postural instability

Postural Adjustment

Postural Instability

Feedback for unancipated postural instability

FIGURE 3-6  Basic principles of postural control.

Impairment of Postural Control Disruption, damage or impairment to any of the systems involved in postural control will have an impact on an individual’s postural control mechanism to a varying degree. If the individual is unable to utilise normal mechanisms of postural control due to damage to either an immature brain as in a young infant, or a more mature brain as in an older child or adult, they will have difficulty controlling, organising and adapting movements in response to a task or environmental stimuli. They may be unable to change their posture and consequently spend a sustained period of time in a certain position without the ability to oppose the force of gravity. For example, tightness or shortening of particular muscle groups may have distinctive postural presentations; in a sitting position, tight hamstring muscles may pull the pelvis into a posteriorly tilted position and create a subsequent slumped spinal posture (Fig. 3-7). Similarly, we know that damage to specific parts of the brain during the course of a disease can also cause distinctive postural problems, such as is seen with the imbalance of dopamine and acetylcholine (both neurotransmitters) within the basal ganglia in Parkinson’s disease, resulting in a distinctive stooped posture, tremor and bradykinesia or reduced movements (Fig. 3-8). Any impairment of postural control can lead to a cycle of significant long-term issues, which in turn may lead to a further loss in postural ability. Thus, careful and timely management of posture is of benefit to address impaired postural control.

What Is Postural Management? Postural management is ‘a planned approach encompassing all activities and interventions which impact on an individual’s posture and function’ (Gericke, 2006). It has been advocated that to be most effective, it needs to be considered over a 24 -hour period (NICE, 2012). It should not just include the provision of seating and other positioning equipment, but encompass a more holistic approach through a wide variety of interventions, including: • Postural management equipment. • Individual exercise.

Chapter 3 • Functional Posture  63

• Orthoses. • Active exercise. • Botulinum toxin injections. • Surgery, both soft tissue and bony. • Analgesia/pain management. • Medications to control posture.   

FIGURE 3-7  Tight hamstring muscles pull the pelvis backward and create a slumped posture.

Forward lt of trunk

Reduced arm swinging

Rigidity and trembling of head

Rigidity and trembling of extremies

Shuffling gait with short steps

FIGURE 3-8  Forward lean posture seen in Parkinson’s disease.

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The fundamental overarching aim of a postural management programme is to improve and enable an individual’s activities and participation by promoting efficient movement, limiting deformity, reducing pain and facilitating social inclusion. A postural management programme may assist in achieving this aim by (ISPO, 2009; Jones and Gray 2005): • Promoting normal development and patterns of movement by maintaining postural alignment and reducing unhelpful muscle tone and reflexes. • Enhancing postural stabilisation of the trunk as a prerequisite to functional movement and performance of upper limb movements. • Assisting in preventing or delaying the development of deformity or muscle contractures by maintaining postural alignment. • Optimising the position for feeding, respiratory or digestive function. • Enabling and assisting the exploration of the environment. • Improving head control and position, which is essential for orientation, socialisation and communication skills. • Promoting comfort and relaxation and decreasing fatigue. • Managing pressure distribution and reducing the potential for tissue damage to occur.

What Is a Functional Posture? Regardless of ability and impairment, a functional posture will vary greatly not only between individuals, but there will also be a significant degree of internal variation depending on the task that the individual is required to do. A position used for writing, for example, will most likely be different to a position for relaxation and may differ again to a position for feeding. The number of differing activities and postures that we all undertake during the day is almost limitless. This becomes a real problem for individuals with postural control issues who are restricted in their ability to move between positions or may be confined to one specific seat for most of the day. A functional posture is one that not only offers stability and maintains alignment but also enables functional movement wherever possible with energy efficiency to enable sustaining the posture for any length of time. In sitting, it is generally suggested that this is achieved through the stabilising of proximal body parts such as the pelvis, spine and shoulders, as a prerequisite for achieving distal control, e.g., of the head, neck and upper limbs. For example, stability at the pelvis, trunk and shoulder girdle is required for fine motor and hand control. Traditional seating and positioning theories have focused on achieving an upright symmetrical posture with 90 degrees of flexion at the hips, knees and ankles (commonly referred to as the 90,90,90 position). However, while this may be considered a useful base to start from, it is more widely accepted that this position is not always the most functional position for an individual to sustain and that positioning solutions are likely to require a delicate balance (and often compromise) between achieving an upright symmetrical posture and an individual’s ability to function (Pope, 2002).

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In infants and young children, the development of postural control is closely intertwined with the development of movement and consequent motor skill acquisition. It is therefore important to have an understanding of how postural control develops when assessing and determining the optimum postural management equipment. In the past, motor development was regarded as an innate, maturational process; a child would learn to sit when they were ready (Peiper, 1963). However, nowadays it is accepted that experience plays an important role although it is debated as to what extent. Theoretical frameworks for motor development such as dynamic systems theory (Thelen, 1995) and neuronal group selection theory (Hadders-Algra, 2000) propose more complex systems and influences on motor development than genetics alone. Postural management solutions therefore need to be relevant to the child’s developmental stage and carefully consider not only how they will impact and improve the child’s posture, but their present function and future development of function.

Assessment of Postural Ability for Functional Positioning Solutions This section will focus on the assessment of a child’s or adult’s postural ability with the aim of providing functional seating equipment (Fig. 3-9). While seating is a functional posture for many activities during the day, other positions such as standing or lying may also require assessment to promote maximum function. For some individuals, they may use alternative equipment such as a standing frame for certain activities. For example, a child may need to use their augmentative assistive communication equipment effectively when in a standing position. The assessment process for other functional positions should be largely similar and follow this systematic, holistic approach to equipment provision. When a young person or adult is referred for Electronic Assistive Technologies (EAT), what do you need to consider regarding their posture in sitting, standing or lying? It will be helpful to refer back to the ICF framework to ensure that you consider this piece of equipment in terms of how it might benefit or impact on all components of the ICF; their body structure and function, their activity and participation. Consider the environmental or personal factors that may affect the use of this equipment. You will already have asked the ‘bigger picture’ questions around how this equipment will fit into their life, what the purpose of this equipment will be and importantly what the person’s priorities are. For a person to be able to use any equipment effectively, they will need to be positioned optimally for both Gathering your informaon

Idenficaon of problems and needs

Recommendaons for prescripon

Constraints FIGURE 3-9  Assessment process diagram.

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comfort and function. However, there may be many factors which impact either on this optimum positioning or the use of the equipment, which need to be considered. You will need to ascertain not only the important information that will identify the person’s individual problems and their needs, but also identify what constraints there might be to any recommendations you consider.

Gathering Your Information The following information will need to be gathered from the child or adult user’s perspective, from families and caregivers, as well as from other professionals involved in this aspect of their care.

Medical Conditions Affecting Posture • What is the person’s general health like? If a person is often unwell, their tolerance of seating may be reduced. • Is the person in any pain? Pain may be experienced for myriad reasons, impacting on a person’s tolerance to attain a certain posture or to maintain a posture for any length of time. This is therefore one of the most important factors to consider prior to any seating provision. • Has the person had any orthopaedic interventions in the spine, upper or lower limbs or are any planned in the near future? • Does the person experience seizures? How might this affect any seating provision? • Are there any musculoskeletal concerns affecting posture? • Are there any vulnerable pressure areas which may affect skin integrity? • What is the person’s swallowing ability like? This may affect a person’s head and trunk position. • Is there a respiratory condition impacting on positioning? • Are there any nutrition needs? Does the person need to be in an upright position? Does the wheelchair have to accommodate any storage of nutrition equipment? • Are there any continence issues to consider? • Are there any sensory needs? Does the person have any visual and hearing difficulties impacting on their posture? • What is the person’s weight and height? Does this affect their choice of equipment provision? • For night-time positioning equipment, are there any sleep issues?

Psychological Factors Impacting Posture • Are there any behavioural issues which may impact on the optimum posture and safety of the equipment? • Are there any reasons why this equipment may not be acceptable for personal reasons? What are the young person’s, adult’s or family’s/carer’s experiences of equipment in the past which may impact on future provision?   

Chapter 3 • Functional Posture  67

Social and Environmental Factors Affecting Posture It may be useful to consider the following factors: • Home and family, carers, respite care, other environments, including school where the seating may be used. • Daily routine in different environments. • How will this equipment be transported? • Eating and drinking – will this equipment be used for this? What other equipment will need to be considered? • How will the person transfer in and out of the equipment? • What personal care is required?    Next is the physical assessment.

Physical Assessment It is useful to have a systematic approach to the physical assessment to assess: • Position of the pelvis. • Direction of lower limbs in relation to pelvis. • Movement and position of hips, knees and feet. • Shoulder rotation and obliquity. • Movement and position of the spine. • Movement and position of the arms. • Position of the head. • Weight distribution and weightbearing.    This will enable you to gain a picture of the person’s preferred posture, their abilities in the position with and without support and any limitations of movement they have. When assessing for seating or standing, it is usually useful first to see how the person is positioned in their current equipment before taking them out to assess their movements and posture in the lying, sitting or standing positions.

Understanding the Position of the Pelvis The pelvis is often referred to as the ‘keystone’ of posture from which the spine, trunk and limbs move. So, what is a ‘normal’ pelvic position? This is commonly described as a neutral pelvis (Fig. 3-10); the alignment of the anterior superior iliac spine (ASIS) and the pubic bone are in line with each other. The pelvis may be positioned either in posterior or anterior tilt.

Sitting With the Pelvis in Posterior Tilt One of the most common postural issues you are likely to encounter is when a person sits with their pelvis posteriorly tilted (Fig. 3-11): on examination, you will find that the ASIS is higher than the posterior superior iliac spine (PSIS). The pelvis is rolling backward and this puts the spine into a C-type posture. The lumbar spine is flexed and there is kyphosis

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FIGURE 3-10  Neutral pelvis. ASIS, anterior superior iliac spine; PSIS, posterior superior iliac spine.

FIGURE 3-11  Posterior pelvic tilt.

of the thoracic spine. The shoulders are usually protracted (rounded shoulders) and there may be increased extension of the neck with consequent ‘chin poke’ position or the head may fall forward. For those with neurological impairments and limitations in motor control, this posture is likely to have functional implications. Head control may be more difficult and swallowing and speech may be affected due to the position of the head and neck. Due to the limited support

Chapter 3 • Functional Posture  69

of the trunk and consequent ability to control trunk movements, balance may be affected, as well as the ability to use the upper limbs for function. With the weight of the upper body on the sacral area, there may be concerns regarding undue pressure and skin integrity. There are many reasons why a person may sit in posterior pelvic tilt. Through your assessment you will need to analyse why this might be. Possible reasons may be tight hamstring or hip flexor muscles, low truncal muscle tone making it difficult to hold the spine upright against gravity or abnormal muscle tone contributing to this posture. Alternatively, you may find that a person may be able to sit with a neutral pelvis out of their wheelchair but due to technical reasons to do with the wheelchair, the person is ‘forced’ to adopt this posteriorly tilted position in their wheelchair. For example, the seat may be too deep so that the person is unable to sit with their pelvis at the back of the seat causing this rolling back posture. Other reasons may be that the hip angle is too acute, the backrest too upright for the person or the footplate is too low. The upholstery of an in situ sling may cause the bottom to slip forward. A loose pelvic belt may be a simple cause. All these clinical and technical reasons need to be considered before a possible solution can be found. For the person who tends to adopt this posture despite adaptations to the wheelchair, three points of control are usually required to aid control: posterior to the pelvis and sacrum to block movement posteriorly, a mechanical block under the thighs or in front of the knees to prevent anterior movement and a lap strap to stabilize the pelvis.

Sitting With the Pelvis in Anterior Pelvic Tilt Anterior pelvic tilt is when the ASIS is lower than the PSIS (Fig. 3-12). This causes an increased lumbar lordosis (inward arching of the lower back) and a tendency to shoulder retraction (shoulders pulled backward).

FIGURE 3-12  Anterior pelvic tilt.

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A person may sit in anterior pelvic tilt for a variety of reasons. They may have tight hip flexor, quadriceps or spinal muscles, which bring the pelvis into this position. Alternatively, they may rest in this position due to weak abdominal muscles, being overweight or due to an increased lumbar lordosis. Technical reasons due to the set-up of the wheelchair may be the cause of this posture, e.g., if the seat cushion is too sloped anteriorly, the back rest too vertical or has an excessive lumbar contour. Sitting in anterior pelvic tilt may cause functional difficulties. It may alter the position of the head, affecting eating and drinking, communication, vision or social interactions. It may cause the shoulders to retract impacting on the use of the upper limbs. Balance of the trunk and upper body may be affected due to limited support from the wheelchair. There may be consequences on pressure loading. If the person continues to adopt this posture despite adaptations to the wheelchair, positioning a primary pelvic belt across the ASIS and attaching it to the back of the seat may be helpful. A secondary strap could then be positioned between 45 and 90 degrees to the seat to prevent the pelvic belt from riding up into the abdomen.

Pelvic Obliquity Pelvic obliquity is when one side of the pelvis is higher than the other (Fig. 3-13). As the pelvis is not symmetrical, there will be a compensatory C-shaped curve in the lumbar and thoracic spine. The shoulder on the side of the raised ASIS will be lower than the opposite shoulder. This may be due to asymmetrical muscle strength or tone, asymmetry of bone structure, soft tissue or the presence of a scoliosis. Some technical causes of pelvic obliquity may be that the seat cushion is not solid enough, the wheelchair too wide, arm supports too high or too low or that the person has just not been correctly positioned in their seat. If the pelvic obliquity is correctable, a small wedge or pad under the lower side of the pelvis may help to level the pelvis. However, if the pelvic obliquity is not correctable, building up the seat under the raised side may help to even out the pressure distribution and load bearing. Care needs to be taken not to overcorrect the obliquity.

FIGURE 3-13  Pelvic obliquity.

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Pelvic Rotation Pelvic rotation is when one side of the pelvis is further forward than the other side (Fig. 3-14). Some degree of pelvic rotation is usually found if there is any pelvic obliquity. This may be due to asymmetry of muscle tone, asymmetry of hip abduction, adduction or hip flexion, leg length discrepancy or a subluxed/dislocated hip. Technical causes of this posture include the trunk not being adequately supported, incorrect footrest heights particularly if there is asymmetry of hip flexion or if the person has not been correctly positioned in their wheelchair. A rear hip belt may assist in derotating the pelvis.

Direction of the Lower Limbs in Relation to the Pelvis The lower limbs are normally perpendicular to the ASIS but may be positioned in either hip abduction (Fig. 3-15) or adduction (Fig. 3-16). The hips may be ‘windswept’ to one side (Fig. 3-17).

Movement of the Lower Limbs It is important to know how much range of movement a person has in their joints and muscles to be able to be positioned in a functional, upright position and to be comfortable for a period

FIGURE 3-14  Pelvic rotation.

FIGURE 3-15  Hip abduction: the femurs are away from the midline.

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FIGURE 3-16  Hip adduction on one side: right femur is toward the midline.

FIGURE 3-17  ‘Windswept’ hips: legs toward one side of the body, e.g., left femur is in abduction and right is in adduction.

of time. The main measurements of range of movement in the lower limbs that impact on postural ability are shown in the next paragraph. These measurements need to be accurately carried out with the person lying on a firm plinth. It will require two people, one of whom should be experienced in measuring joint movement. It is important to note how much stretch or pressure is required to achieve a certain range of movement. For example, if the hip can be flexed to 90 degrees but this cannot be tolerated for more than a few seconds, then the person will not be comfortable to sit with their hip in this position for any length of time. Always check asymmetry of movement as this will require accommodation within equipment. Important measurements required for seating include: • Hip flexion (movement of the knee toward the chest). Without sufficient hip flexion, a person is unable to sit with their hips at right angles. • Hip abduction/adduction with hip flexed to 90 degrees (movement of the hip away from the midline/toward the midline). This is often uneven, right to left, and seen with internal rotation of one of the hips. It will affect the position of the pelvis and how the person is taking weight through their buttocks. In children and young people, it can be a sign of changes at the hip joint such as hip subluxation.

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• Hip internal/external rotation with the hip flexed to 90 degrees (rotation movement of the hip toward/away from the midline). This will affect the position of the femurs in relation to the pelvis. • Popliteal angle (measures hamstring muscle length). • Knee flexion/extension with hips flexed to 90 degrees. • Ankle dorsiflexion/plantarflexion with hip flexed to 90 degrees. • Thomas test (measures any fixed flexion deformity at the hip).    SHOULDER ROTATION AND OBLIQUITY This should be assessed in lying when the person is relaxed to see if the shoulders are symmetrical and, if not, whether the posture is fixed or moveable. This can then be observed in sitting to see if it changes, as this will indicate whether the equipment will have to accommodate a fixed posture or whether increased support may enable a more symmetrical position. MOVEMENT AND POSITION OF THE SPINE When the pelvis is in a neutral position, the lumbar spine has a degree of lordosis, the thoracic spine some kyphosis and the cervical spine lordosis (Fig. 3-18). However, there can be abnormal curvature of the spine. A sideways curvature is termed a scoliosis (Fig. 3-19). An abnormal rounding of the back is termed kyphosis. MOVEMENT AND POSITION OF THE UPPER LIMBS Check whether the upper limbs are flexed, extended or rotated. This may affect the position of the upper body.

FIGURE 3-18  Neutral spine.

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FIGURE 3-19  Scoliosis of the spine.

POSITION OF THE HEAD Is the person able to hold their head upright in a midline position? If not, are there any reflexes which may be affecting this, e.g., ATNR? Does the person have altered muscle tone which is affecting their head position? WEIGHT DISTRIBUTION AND LOADBEARING Assess where the person is taking weight through their buttocks. Is it symmetrical or asymmetrical?

Assessment Out of Equipment in the Sitting Position Always sit the person on a plinth or bench with their feet on the floor so that you can assess their posture out of a wheelchair and how much support they require to achieve an upright, functional posture. It may be helpful to ask yourself the following questions: • Where are your hands supporting the person’s body? • What are your hands doing? Are they correcting, providing stability or preventing movement? • How much force are you applying with your hands? • In what direction are your hands applying the support? • How much surface contact is required; a whole hand or less? • What is the least amount of support needed? • Why is this person sitting like this and is there an obvious cause?

Using Measurement Tools Measurement tools are useful in capturing the postural ability of a person in a systematic way. Examples of these are: the Chailey Levels of Ability (Pountney et al., 2004), which can

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be used to determine the child’s postural ability in differing positions; the Oxford Centre for Enablement Management of Physical Disability 24-7 (Pope et al., 2007), which is a comprehensive and systematic postural assessment format, and the Seated Postural Control Measure (Gagnon et al., 2005), which is designed to demonstrate functional outcomes from seating provision.

Case Studies Alan’s Case Study (Adult) Alan is a 79-year-old male with a dense, left-sided hemiplegia following a stroke. He is currently using a self-propelling wheelchair as his main form of mobility but is highly reliant on care staff to assist him. Alan is attempting to move his chair using his right foot and arm, but this is causing him to slide in his seat, causing shoulder pain and he is then requiring assistance to be repositioned. He has also developed an area of redness on his sacrum, which is causing discomfort.

Key Assessment Data MEDICAL Alan has a dense, left-sided hemiplegia following a haemorrhagic stroke due to an arteriovenous malformation. He is able to communicate verbally, although his speech can be slow at times. He has no active movement of his left arm and little use of his left leg. He has a history of pressure areas on his sacrum, which have resulted in periods of bed rest in the past and has left this area of skin highly vulnerable to further pressure damage.

Social/Environmental/Psychological Alan lives in a large residential care setting that is fully adapted and wheelchair accessible. Prior to his stroke he was very fit and active and he is becoming increasingly depressed by his lack of independent mobility and inactivity. Alan has been able to do an assisted standing transfer; however, the height of his wheelchair is very low to enable him to foot propel so this is becoming increasingly difficult.

Physical Key findings of the physical assessment are: • Alan has very limited active movement in his left arm and leg. • Low tone through the left side of his trunk and lower limb with significant spasticity in his left upper limb. • Scoliotic spinal curve convex to the right (this is correctable). • Predominantly sits in posterior pelvic tilt with subsequent kyphotic spinal curvature – he is able to correct this but cannot maintain it in his current seating. • Right shoulder pain due to overuse from self-propelling and also from holding onto the armrest of his chair to prevent him from leaning to the left.  

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Postural Management Goals • To improve his independence and comfort. • To establish a stable functional position to improve his independent mobility and free up his right hand for functional activity. • To increase seating tolerance by preventing sliding in the seat and therefore enable increased participation in activities. • To prevent reoccurrence of pressure areas on his sacrum through improved pressure distribution and reduction in shearing damage due to sliding. • To reduce shoulder pain in his right shoulder.

Identified Seating Requirements It is identified that Alan’s seating needs to: • Secure his pelvis to prevent sliding and falling into posterior tilt. • Offer firm back support particularly to the posterior aspect of his pelvis; support required up to shoulder height. • Support around the lateral aspects of pelvis to maintain pelvic alignment and assist with trunk alignment. • Offer lateral support to his trunk to correct scoliosis. • Have a simple head support for rest periods • Offer support for his left hemiplegic arm. • Be of an appropriate height to facilitate standing transfers.

Recommendations • Liaise with medical team regarding pain management for his right shoulder. • Liaise with nurses regarding monitoring of pressure areas. • A two-part customised seating system is recommended; a seat cushion that provides firm postural support with an ischial ramp and pressure relief, and a firm padded back support with thoracic lateral supports, head rest, padded pelvic belt and arm support. • Assessment in a powered wheelchair with right-hand joystick control and possible seat riser to assist with transfers.

John’s Case Study (Paediatric) John is a 10-year-old boy who has a diagnosis of dyskinetic/dystonic cerebral palsy with four-limb involvement. His parents report that he is not really tolerating his current seating system, which is an off-the-shelf seating system with dynamic backrest, and appears to be experiencing a lot of discomfort in his chair. His teaching assistant in school reports that he is spending a lot of the day in school out of the chair due to distress in his seating. This is impacting negatively on his participation in educational activities and also on his social interactions. His parents and teaching staff feel that he has the cognitive potential to access electronic assistive technologies, but this has not been possible as he is spending too little time in his seat and a consistent access method has been difficult to ascertain.

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Assessment Findings MEDICAL John has dyskinetic (dystonic) cerebral palsy Gross Motor Function Classification System Level V (Palisano et al., 1997), and presents with very strong extensor patterning of his limbs and rotation of his head and neck. When he is relaxed, John has low central muscle tone (e.g., in his trunk, neck and pelvis) and high distal tone (e.g., upper and lower limbs). He is on a high level of medication to manage his dystonia. John receives all his nutrition through a gastrostomy tube and has a high level of seizure activity.

Social/Environmental/Psychological John lives at home with his parents and younger sibling. He attends a school for children with complex special needs as a day pupil. Their home has been fully adapted and is wheelchair accessible. John is a very sociable young boy who loves interaction with his sibling and peers and is showing some potential for higher-level communication; he currently uses eye blinking as his communication method.

Physical Key findings of the physical assessment are: • Very strong dystonic patterning. • Strong extensor tone with adduction of his lower limbs. • Lateral spinal curve convex to the right (this is still correctable). • ATNR evident at times. • Able to be placed in seated position when relaxed, but unable to maintain this without support. • In sitting, his pelvis is oblique raised on the left but this is not evident in lying. • Loss of hip flexion in the left hip, only able to achieve 80 degrees of flexion.

The following postural management goals were identified for John: • To improve comfort and reduce pain. • To increase seating tolerance and therefore enable increased participation in activities and education. • To facilitate a stable functional position to enable assessment for electronic assistive technology access.

Identified Seating Requirements It is identified that John’s seating needs to: • Accommodate his reduced hip flexion on the left side as this then reduces his pelvic obliquity. • Maintain maximum flexion on the right to anchor position and to inhibit extensor pattern. • Maintain his hips in an abducted position to assist in inhibiting his extensor patterning.

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• Accommodate his fixed anterior pelvic tilt. • Provide support to the lateral aspects of his pelvis to maintain pelvic alignment and assist with trunk alignment. • Provide lower lateral support at the apex of his lateral trunk curvature and high on the left thoracic to correct his scoliosis. • Provide improved head control – particularly if eye gaze technology is to be explored. • Maintain a dynamic element within the seat, as it is felt this is assisting with tolerance.

Recommendations • To liaise with his medical team regarding muscle tone management. • To provide a custom-made foam seat moulded to accommodate John’s fixed postural deformities, fitted into a seating system with a dynamic backrest. • To assess for alternative head supports that have an option to add anterior and lateral support.   

References Barnes, M.P., 2001. Overview of the clinical management of spasticity. In: Barnes, M.P., Johnson, G.R. (Eds.), Upper Motor Neurone Syndrome and Spasticity. Cambridge University Press, Cambridge UK. Bobath, B., 1990. Adult Hemiplegia: Evaluation and Treatment. Heinemann, Oxford. Brauer, S.G., Woollacott, M., Shumway-Cook, A., 2002. The influence of a concurrent cognitive task on the compensatory stepping response to a perturbation in balance-impaired and healthy elders. Gait and Posture 15 (1), 83–93. Britton, T., 2004. Abnormalities of muscle tone and movement. In: Stokes, M. (Ed.), Physical Management in Neurological Rehabilitation, second ed. Elsevier Mosby, London. Carr, J., Shepherd, R., 2014. Neurological Rehabilitation Optimizing Motor Performance, second ed. Elsevier, India. Gagnon, B., Noreau, L., Vincent, C., 2005. Reliability of the seated postural control measure for adult wheelchair users. Disability and Rehabilitation 27 (24), 1479–1491 30. Gericke, T., April 2006. Postural management for children with cerebral palsy: consensus statement. Developmental Medicine and Child Neurology 48 (4), 244. Goodwin, J., Lecouturier, J., Crombie, S., Smith, J., Basu, A., Colver, A., Kolehmainen, N., Parr, J.R., Howel, D., McColl, E., Roberts, A., Miller, K., Cadwgan, J., March 2018. Understanding Frames: a qualitative study of young people’s experiences of using standing frames as part of postural management for cerebral palsy. Child: Care, Health and Development 44 (2), 203–211. https://doi.org/10.1111/cch.12540. Epub November 23, 2017. Green, E., 2004. Developmental neurology. In: Stokes, M. (Ed.), Physical Management in Neurological Rehabilitation, second ed. Elsevier Mosby, London. Hadders-Algra, M., 2000. The Neuronal Group Selection Theory: a framework to explain variation in normal motor development. Developmental Medicine and Child Neurology 42, 566–572. Hadders-Algra, M., Carlberg, E.B., 2008. Introduction: why bother about postural control? In: HaddersAlgra, M., Carlberg, E.B. (Eds.), Postural Control: A Key Issue in Developmental Disorders. Mac Keith Press, London.

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Ham, R., Aldersea, P., Porter, D., 1998. Wheelchair Users and Postural Seating: A Clinical Approach. Churchill Livingstone, London. Hansson, E.E., Beckman, A., Håkansson, A., 2010. Effect of vision, proprioception, and the position of the vestibular organ on postural sway. Acta Oto-Laryngologica 130 (12), 1358–1363. Horak, F.B., Macpherson, J.M., 2011. Postural orientation and equilibrium. In: Terjung, R. (Ed.), Comprehensive Physiology. Huang, I.C., Sugden, D., Beveridge, S., 2009. Assistive devices and cerebral palsy: factors influencing the use of assistive devices at school by children with cerebral palsy. Child: Care, Health and Development 35 (5), 698–708. Ibuki, A., Bernhardt, J., 2007. What is spasticity? The discussion continues. International Journal of Therapy and Rehabilitation 14 (9), 391–395. ISPO, 2009. Recent Developments in Healthcare for Cerebral Palsy: Implications and Opportunities for Orthotics. International Society of Prosthetics and Orthotics, Denmark. Jones, M., Gray, S., 2005. Assistive technology: positioning and mobility. In: Effgen, S.K. (Ed.), Meeting the Physical Therapy Needs of Children. FA Davis Company, Philadelphia. Lance, J., 1990. What is Spasticity? Lancet 335, 606. Latash, M., Hadders-Algra, M., 2008. What is posture and how is it controlled? In: Hadders-Algra, M., Carlberg, E.B. (Eds.), Postural Control: A Key Issue in Developmental Disorders. Mac Keith Press, London. Latash, M., 2008. Neurophysiological Basis of Movement, second ed. Human Kinetics, Illinois. Massion, J., Alexandrov, A., Frolov, A., 2004. Why and how are posture and movement coordinated? Progress in Brain Research 143, 13–27. NICE, 2012. Spasticity in Children and Young People, CG 145. National Institute for Health and Care Excellence, London. Palisano, R., Rosenbaum, P., Walter, S., Russell, D., Wood, E., Galuppi, B., 1997. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Developmental Medicine and Child Neurology 39, 214–223. Peiper, A., 1963. Cerebral Function in Infancy and Childhood. Springer, Michigan. Pope, P.M., 2002. Posture management and special seating. In: Edward, S. (Ed.), Neurological Physiotherapy. Churchill Livingstone, Edinburgh. Pope, P.M., 2007. Severe and Complex Neurological Disability: Management of the Physical Condition. Elsevier Butterworth-Heinemann, Oxford. Pope, P.M., Murphy, W.M., Postill, P., Long, D., 2007. Management of Physical Disability 24-7 (MPD 24-7). Oxford Centre for Enablement, Nuffield Orthopaedic Centre NHS Trust. Pountney, T.E., Mandy, A., Green, E.M., Gard, P., 2002. Management of hip dislocation with postural management. Child: Care, Health and Development 28 (2), 179–185. Pountney, T., Mulcahy, C., Clarke, S., Green, E., 2004. The Chailey Approach to Postural Management: an explanation of the theoretical aspects of postural management and their practical application through treatment and equipment, second ed. Chailey Heritage Clinical Services, North Chailey. Pountney, T.E., Mulcahy, C.M., Clarke, S., Green, E.M., 2000. The Chailey Approach to Postural Management: An explanation of the theoretical aspects of postural management and their practical application through treatment and equipment. Active Design, Birmingham. Other sensory feedback that affects motor performance. In: Purves, D., Augustine, G.J., Fitzpatrick, D., Hall, W.C., LaMantia, A., McNamara, J.O., Williams, S.M. (Eds.), 2004. Neuroscience, third ed. Sinauer Associates, Sunderland, MA. Reilly, D.S., Van Donkelaar, P., Saavedra, S., Woollacott, M.H., 2008. Interaction between the development of postural control and the executive function of attention. Journal of Motor Behavior 40 (2), 90–102.

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Saladin, K.S., 2011. Anatomy & Physiology: The Unity of Form and Function. McGraw-Hill, New York. Sanger, T.D., Chen, D., Fehlings, D.L., et al., 2010. Definition and classification of hyperkinetic movements in childhood. Movement Disorders 25, 1538F49. Shumway-Cook, A., Woollacott, M., 2001. Motor Control Theory and Practical Applications, second ed. Lippincott, Williams and Wilkins, Philadelphia. Thelen, E., 1995. Motor development. A new synthesis. American Psychologist 50 (2), 79–95. WHO, 2001. International Classification of Functioning, Disability and Health. Switzerland, World Health Organisation, Geneva. WHO, 2007. International Classification of Functioning, Disability, and Health: Children and Youth Version: ICF-CY. Switzerland, World Health Organisation, Geneva.

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Assessment and Outcomes Donna Cowan1, Ladan Najafi2 1 CHAI L EY CL I NI CAL S E RV I C E S , R E H A B I L I TAT I O N E N G I N E E R I N G S E RV I C E S , S US S EX CO M M UNI TY NHS F O U N D AT I O N T R U S T, C H A I L E Y, U N I T E D K I N G D O M; 2 M EDI CAL PHYS I CS , EAS T KENT H O S P I TA L S U N I V E R S I T Y N H S F O U N D AT I O N T R U S T, C A N T E R B U RY, U N I T E D K I N G D O M

CHAPTER OUTLINE What Is Assistive Technology?��������������������������������������������������������������������������������������������������������� 82 The Growing Need for Assistive Technology���������������������������������������������������������������������������������� 82 Assessment and Provision of AT������������������������������������������������������������������������������������������������������ 83 Assessment Models�������������������������������������������������������������������������������������������������������������������������� 85 The Assessment Team����������������������������������������������������������������������������������������������������������������������� 88 Referral Forms����������������������������������������������������������������������������������������������������������������������������������� 90 Assessment Time������������������������������������������������������������������������������������������������������������������������������� 91 Physical Skills������������������������������������������������������������������������������������������������������������������������������������� 93 Sensory Skills������������������������������������������������������������������������������������������������������������������������������������� 94 Follow-Ups and Reviews������������������������������������������������������������������������������������������������������������������ 95 Outcome Measures for Assistive Technology��������������������������������������������������������������������������������� 96 International Classification and Function����������������������������������������������������������������������������������� 96 Individually Prioritised Problem Assessment������������������������������������������������������������������������������ 97 Psychological Impact of Assistive Devices Scale�������������������������������������������������������������������������� 98 Quebec User Evaluation of Satisfaction With Assistive Technology����������������������������������������� 98 Therapy Outcome Measures System������������������������������������������������������������������������������������������� 98 Functional Independence Measure��������������������������������������������������������������������������������������������� 99 Goal Attainment Scaling�������������������������������������������������������������������������������������������������������������� 99 References��������������������������������������������������������������������������������������������������������������������������������������� 100 Further Reading������������������������������������������������������������������������������������������������������������������������������ 103

Handbook of Electronic Assistive Technology. https://doi.org/10.1016/B978-0-12-812487-1.00004-1 Copyright © 2019 Elsevier Ltd. All rights reserved.

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What Is Assistive Technology? Several definitions exist for the term assistive technology (AT); however, a commonly used statement is that listed in the United States Assistive Technology Act (1998), which states that AT refers to any ‘product, device, or equipment, whether acquired commercially, modified or customized, that is used to maintain, increase, or improve the functional capabilities of individuals with disabilities’. Electronic assistive technology (EAT) is therefore a subset of this umbrella term. This chapter will cover essential considerations when assessing and providing AT to clients/customers/users.

The Growing Need for Assistive Technology Many might think of having ‘a disability’ as a life experience they will never encounter and therefore will never have a need for AT. However, when considering the changing demographics of the United Kingdom it seems that this is not such a far-fetched possibility. The population in the United Kingdom is getting older with 18% aged 65 and over and 2.4% aged 85 and over.1 As a result of the ageing population the old age dependency ratio (OADR) is increasing. The OADR is the number of people over 65 years old for every 1000 people aged between 16 and 64 years old – in mid-2016 the United Kingdom’s OADR was 285. This means the number of people to physically care or support the ageing population is decreasing. The number of people over 65 is projected to continue to grow to nearly a quarter of the population by 2046. Similar changes are taking place across the world. Therefore there is an increasing role for AT to support and enable people to remain independent in their own home. The Convention on the Rights of Persons with Disabilities (CRPD) requires governments to meet the AT needs of citizens. The World Report on Disability (World Health Organisation, 2011) estimates that 15% of the world’s population lives with some form of disability. The report also provides evidence of the unmet global need for AT of all varieties. In 2013 at the General Assembly on Disability and Development, the World Health Organisation (WHO) was requested to develop and coordinate a global initiative to support member states in realising their obligations toward increasing access to AT. In 2014 the Global Cooperation on Assistive Technology (GATE) in partnership with international organisations, donor agencies, professional organisations, academia and user groups was established. GATE has identified four key areas (‘four Ps’)2 to be addressed by member states: • Policy: assistive technology policy framework. • Products: Priority Assistive Products List. 1 https://www.ons.gov.uk/peoplepopulationandcommunity/populationandmigration/populationestimates/ articles/overviewoftheukpopulation/july2017. 2 http://www.who.int/phi/implementation/assistive_technology/phi_gate/en/.

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• Personnel: assistive products training package. • Provision: assistive products service delivery model.    The number of people worldwide that could benefit from AT is estimated at over a ­billion (World Health Organisation, 2011). This number is projected to rise above 2 billion by 2050. While an ageing population is a common factor in increasing the need for AT all over the world, there is an even greater demand for AT in some regions due to emergencies, e.g., the eastern Mediterranean.3 In the past 20 years disasters such as large-scale earthquakes in Bam, Islamic Republic of Iran, and in Kashmir, Pakistan, have resulted in huge numbers of injuries, which has led to a considerable increase in disabilities in both countries (Mallick et al., 2010). War and conflict also increase the toll of those requiring AT.4 Despite this growing need, it is estimated that today only 1 in 10 people has access to AT (WHO, 2017). This situation is attributed to lack of financing, availability, awareness, trained p ­ ersonnel and high costs. CPRD has had positive influence and raised the profile of AT and the need to develop infrastructures to put it in place. An example of this is the Mada Assistive Technology Centre based in Qatar, which was established in 2010 in response to the UN CRPD. The focus of the centre is information and communication technology and how it can be used in education, employment and the community to enable people with disabilities. Since its development, Mada has played an important role in raising awareness of AT in the region. In 2013, Mada embarked on a project to develop an Augmentative and Alternative Communication (AAC) symbol set called Tawasol5 Symbols, which focuses on the Qatari Arabic language and modern standard Arabic. The project is an international collaboration with the University of Southampton and Hamad Medical Corporations. It is funded by the Qatar National Research Fund.

Assessment and Provision of AT Many models of provision exist. In general, in European countries a person with disabilities is assessed and supported through public health systems, e.g., France, Italy, Spain and Demark, or through the combination of private and public health systems, e.g., United Kingdom, Netherlands and Germany. In countries such as the United States or Australia the same person would be seen in a private system that will also sell certain products. These models provide different requirements in terms of prescribing, e.g., limitations in the range of products available due to costs or eligibility criteria, and crossagency working.

3 http://applications.emro.who.int/docs/RC_technical_papers_2016_4_19025_EN.pdf. 4 http://www.bbc.co.uk/news/world-middle-east-36363222. 5 http://tawasolsymbols.org/en/about/.

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The Nordic Centre for Rehabilitation Technology (NCRT) published a report in 2007 highlighting pressures or challenges that Nordic countries face. Many will be recognisable to those working in the United Kingdom in an AT service: • Growing public expenditure: This is due to an ageing population and an increase in the rights of disabled people. • Rapid changes in technology: While this opens up new opportunities, it can also create new barriers against participation as it requires constant reconsideration. • Coordinated working across agencies: The responsibility for the provision of AT lies with different agencies and therefore coordination between them is key to its success.    In some instances, the model of provision of AT is incorporated into a model which considers a broader spectrum of support systems. For example, in Denmark the decision on AT is based on an overall assessment by a case handler. Decision making takes into account whether it is appropriate to provide personal assistance or not. Each area or municipality runs its own warehouses of AT. However, there is an increasing tendency for municipalities to lease their AT from the private sector. Each municipality covers the cost of AT devices and consultations, and therefore there is no central, national purchasing function. In addition, in the Danish model, users are expected to pay some costs for the use of their equipment. For example, batteries for powered wheelchairs (NCRT, 2007). In other countries, models work effectively across several statutory organisations, i.e., in Iceland there are a number of players from various sectors involved in the provision of AT. Depending on the individual’s requirement the organisations involved may be the rehabilitation sector, the health sector, schools, workplaces, as well as other services. It is, however, the Social Security Administration’s Assistive Technology Centre that has the greatest responsibility for disabled people living at home. The function of this is to ensure that AT devices are provided for activities of daily living at home, driving, communication, orthopaedics, disposable daily living items and medical-related AT such as medication administration equipment (e.g., syringe pumps). The centre is responsible for all relevant services such as consultation, case handling, recycling, maintenance, supply, procurement and information for users (NCRT, 2007). In Nordic countries those prescribing AT devices are usually occupational therapists, physiotherapists, speech therapists and nurses. AT centres are consulted if those professionals do not feel adequately skilled to assess and prescribe. Users have a significant role in their care plan and choice of AT devices. The Assistive Technology Industry Association in the United States reports that an AT team may include family doctors, teachers, speech-language pathologists, rehabilitation engineers, occupational therapists and other specialists, including representatives from companies that manufacture AT. The Rehabilitation Engineering and Assistive Technology Society of North America6 provides training and accreditation in the provision of AT 6 https://www.resna.org/get-certified/atp/atp-0.

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devices. Successful applicants can then use the title Assistive Technology Practitioner with specific competencies in analysing the needs of consumers with disabilities, assisting in the selection of appropriate AT for the consumers’ needs and providing training in the use of selected devices. In the United Kingdom, healthcare scientists when specialising in AT complete a broader range of competencies to gain state registration as clinical scientists. It is important that the personnel involved in delivering AT have the necessary knowledge to prevent potential harm associated with incorrect assessment and fitting. Appropriate services can have a substantial impact on the outcomes of using AT. Borg et al. (2015) outline some of these impacts by stating that ‘for children it provides the means of access to and participation in educational, social and recreational opportunities; empowers greater physical and mental function and improved self-esteem; and reduces costs for educational services and individual supports’.

Assessment Models Assessment is part of the process of providing AT (Federici and Scherer, 2017). It is part of an iterative cycle because the needs of a person change, for example, as they age, as their lifestyle/circumstances change or as their disability changes. The literature indicates that the quality of assessment impacts on the abandonment of technology. AT devices are abandoned or disused for many reasons and sometimes AT abandonment is based on a mismatch between the individual’s desires and/or needs. In other instances the individual outgrows the capabilities of the device (Phillips and Zhao, 1993; Verza et al., 2006; Copley and Ziviani, 2004). Therefore effective assessment and review are required to minimise this risk. Bernd et al. (2009) published a systematic literature review on published methodologies on the selection and advisory process of AT. The results yielded just 16 papers within the timeframe of interest, with nine of the papers being literature reviews and none containing experimental design. Their conclusion is that this is a poorly developed field resulting in a lack of evidence-based procedures for AT selection. In assessing for AT we are required to consider a range of factors, all of which influence successful provision of AT. Scherer et al. (2007) proposed an Assistive Technology Device Framework which identified a model of factors influencing consumer predispositions and provider practices related to procuring/providing a particular AT device. This work notes that the decision on whether a device is appropriate, desirable and supports an individual is the result of a process ‘which is affected by a broader societal climate that determines, in part, unique personal climates which then foster unique provider and consumer perspectives predisposing each to the selection of a particular device’. The authors consider a range of factors, which impacts on the provider and the consumer alongside the assessment of objective need (e.g., the consumer cannot walk 50 feet on a smooth surface) against subjective need (e.g., strong desire to independently move 50 feet on a smooth surface).

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Federici et al. (2014) propose an ideal model for the Assistive Technology Assessment Process that can be viewed from the perspective of the user or the AT service. In this model the prescriber’s recommendations can be a combination of solutions, including physical devices, care/support and environmental interventions. While this book focuses on different types of technology it needs to be acknowledged that these alone are not always enough for many of the clients seen in AT services, but part of an array of structures/ supports they might have in place in their lives, enabling their participation in activities. These other structures might include support workers physically aiding them, task adaption such as an adapted school curriculum appropriate to the student’s needs or other devices which meet some but not all the needs required for the activity of interest. Federici et al. (2014) report that the ‘provision process’ is a user-driven process and any activity of the AT service must find an equivalence to a user action and vice versa. They propose that the user actions can be put into three phases: 1. The user seeks a solution for one or more forms of activity limitation or participation restriction by seeking assistance from a centre for AT. 2. The user checks the solution and tries to check aids provided by the professionals in a suitable evaluation setting. 3. The user adopts the solution after obtaining the assistive devices from the service, etc., receives training for the daily use of AT and receives follow-up.    Therefore the provision of AT is not a one-off exercise but a loop. Each circuit of the loop requires reconsideration of factors to ensure that the solution proposed continues to best meet the clients’ needs. Ideally, the provision process should consider the needs of the individual at the time of assessment as well as looking forward. That is to be aware of what changes might occur and could give rise to additional support being required. For example, when assessing someone with a condition such as motor neuron disease for AT, the assessor will also need to take into account the client’s rapidly changing needs by putting in place equipment which may be adapted quickly to meet the likely future requirements. If working with children, the child’s developmental needs should be considered. For example, if providing a powered wheelchair, the requirements of a 5-year-old child born with quadriplegic cerebral palsy who has never experienced mobility will be different to those of an adult with an acquired spinal injury. The adult will have knowledge and experience of movement, of being able to identify an object and experience getting that object, whereas a child with complex needs may not have experienced this and may have lived with others anticipating their needs. They will need time to learn about the chair and have the opportunity to play and experience using it, supported by others around them to ensure safety; they will then begin to develop an understanding of how they can use the chair to move with purpose and accuracy. Different access methods may need to be trialled. The adult with a spinal injury will equally need support and advice to adapt and effectively use their wheelchair; however, the task of developing their skills will be different.

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While as part of a statutory service it may not be your remit to provide all parts of the package required to support a client in the use of their AT, it is important to be aware of what should be in place and where this might be sourced. This will ensure that all stakeholders are engaged and support the process and ongoing use of AT. In the foregoing example, engagement with the family and child’s therapy team and school to determine if a wheelchair driving programme could be part of the school day might be required and initial training might take place in the school environment. A changing set of games and activities might be devised to develop specific skills. For the adult with a spinal injury, discussion with the community rehabilitation team or a local support group might be appropriate to support training and confidence building. There are several texts which cover the assessment process of AT (e.g., Federici and Scherer, 2017; Cook and Miller Polgar, 2007). The first step is to gather the information you need to start the assessment process. An internet search can generate many results offering options on how to gather information to recommend equipment to meet a range of needs. At the time of writing the majority were in relation to education and providing support to students with disabilities, e.g., SETT framework, unifying functional model and Lifespace Access Profile. A key assessment process was published in the 1980s by Scherer7 matching person to technology (MPT). The MTP model is a framework to assess and recommend a variety of ATs to promote successful usage of the device and reduce the possibility of abandonment. The tools cover a range of technologies and are used in a variety of settings. They can be used to identify where AT might be used and the predisposition to using technology. Much of the information can be gathered from the user before the first meeting. Cook and Hussey (2002) developed the Human Activity Assistive Technology model, which although not an assessment process is a useful starting point when considering the process of providing equipment. This proposes that the Human Performance Model constructed by Bailey (1989) consisting of Human, Activity and Context can be adapted to describe the use of AT if it includes Human, Activity and Assistive technology within a Context. This was described by Cook and Hussey and developed further in 2007 (Cook and Miller Polgar, 2007). This model allows us to consider the different and perhaps changing role of AT in different contexts (e.g., settings, social groups, physical constraints for a given activity) or in different activities (e.g., leisure and play or work/school in a single setting). All of this needs to be considered with respect to a person’s physical, cognitive and sensory abilities and skills. The role that a technology might play in these different situations may vary. For example, in a home setting a person with a communication aid may use it differently or less ­frequently because the family are practised at understanding dysarthric speech, and so the user engages in other communication strategies such as eye pointing, vocalising, ­gestures/signing, etc. However, communication in a social setting such as a family gathering or at school requires greater use of the aid because of the need to participate independently and respond to people who do not know the person so well. 7 http://matchingpersonandtechnology.com/.

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Similarly, physical skills can change. A person’s physical ability (i.e., control of head, arms and hands) may be optimised when in a highly supportive seating system. When out of the seat (e.g., lying in bed, sitting in a sofa) these skills change due to the decrease in postural support and so type of access may need to change. In considering AT for the role of supporting communication we need to ensure that we consider all of these settings and be assured we understand from the user these contexts, activities and abilities/skills to ensure the client can communicate optimally. A further consideration is whether the activity or function is appropriately matched to the person’s cognitive skill set, i.e., is the activity proposed and enabled by this technology appropriate to the developmental or cognitive level of understanding of the user? The chapter on cognition supports the decision-making process regarding when and what technologies might be appropriately used. The client must be able to learn how to use the device and remember how to use the equipment; be able to find the actions they want in a timely manner; and be able to proactively use the device without another person prompting use if it is to fulfil its purpose of increasing independence and function.

The Assessment Team The provision and therefore the assessment for EAT is ideally a multidisciplinary process. Professions such as occupational therapists, speech and language therapists, physiotherapists, doctors and engineers take part in EAT service delivery and all have a role to play. In the United Kingdom some professions play different roles in different settings (e.g., in some services a physiotherapist will lead on powered mobility, seating and posture and in others occupational therapists or engineers will lead). The latest NHS England Complex Disability Equipment service specification outlined the professional groups required to be available to prescribe EAT.8 This included therapists, clinical scientists, technicians, as well as other ad hoc members of the team. Other professionals’ advice is also often required to provide the optimum solution (e.g., audiologist, ophthalmologist, psychologist, teacher, orthopaedic surgeon). It may be that all these team members are not readily available, and you may have to engage with other services to find the answers to the questions you have or refer your client on to other services to fully inform the EAT decision-making process. An example would be having input from a speech and language therapist to determine safe seating positions for eating and drinking when considering use of a powered chair for the first time. In places where the delivery of AT is not well developed, some of these professionals may be unclear on their role in this process. You will therefore need to be clear why you are seeking their advice and what you are trying to achieve in your assessment and provision process.

8 https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2016/03/aac-serv-specjan-2016.pdf.

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Discussion with other services will be required to ensure that the technology you are prescribing does not adversely impact on any other pieces of technology or recommendations for equipment elsewhere. This is particularly the case in countries where equipment services are fragmented, e.g., where a wheelchair service is separate from a communication aid service. These services might also be provided through different agencies (i.e., health vs. social care), which can sometimes introduce a gap in processes and prevent close working. Fragmentation can introduce inefficiencies, particularly for clients with multiple disabilities. Clients will need to go to one service for a powered wheelchair, another for their communication aid and another for their home automation equipment, etc. In some instances, they may also be restricted as to where the equipment might then be used or how it might be used (e.g., a tablet computer only being available to a child in school and not at home). It also makes the process more burdensome from the client’s viewpoint as they need to go to and fro between service when attempting to resolve issues. This fragmented model gives rise to multiple assessments for those with complex or multiple disabilities. It also increases the risk of gaps occurring if each service view itself in isolation. An example of this might be where an integrated access method is going to be the optimum solution for a client who uses a powered wheelchair, communication aid and environmental control. However, where the funding and maintenance of that integrated system comes from is not clear and so the client might instead be provided with three separate access methods and so will require assistance to change from the use of one device to another. This outcome might be ideal if that is what the client chooses but not if they wish to be as independent as possible in the use of their equipment. To give the reader an idea of the extent of the issue, Table 4-1 indicates the range of equipment an individual with quadriplegic cerebral palsy (Gross Motor Function Table 4-1  Range of Equipment and Services that a Person with Severe Disabilities May Require Access to Range of Equipment Required

Range of Services Which Provide Equipment

• Splints (ankle foot orthosis) • Hand splints • Wheelchair and seating • Standing support • Lying support • Static seating system • Powered wheelchair • Shower chair/toilet seat • Computer access • Communication aid • Environmental control • Hoisting • Profiling bed

• Physiotherapy • Occupational therapy • Wheelchair service • Charity • Community equipment provider • Wheelchair service • Environmental control service • Communication aid service • Social services • Local Education Authority

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Classification System level 4 or 5) might need to go about daily life. The first column lists the equipment they might use. The second column lists the likely services in England the client may need to encounter to obtain that equipment and contact regarding maintenance and support. This leads us to understand the significant time that use of this equipment takes in daily life for families or individuals, given that attendance might be required on an annual basis by each service to review or undertake maintenance. This is aside from any medical review appointments which might also be routinely required for an individual. It is therefore important to understand that our clients have been through many assessments and on many occasions they meet a new set of faces and may be expected to answer the same questions. So, it is good practice to make clear why you might need to review the basics with them and the impact on the assessment and that wherever possible information is gathered ahead of a meeting. The entire process should be driven by the user at the centre as the person’s needs will dictate the range of professions required to get the ‘prescription’ correct and so minimise the possibility of abandonment of equipment. Other significant parties will be the family and care support system around that individual. These are the key players.

Referral Forms Each type of EAT will require a different focus on certain aspects of the assessment process so the right device can be provided. Alongside the device will be the package of support that is required because for many, if not all, additional support is necessary from regular maintenance plans through to full training and development packages. Key information is often gathered within a referral form and this varies greatly from service to service. It should be noted that these forms are often aimed at professionals rather than clients or their families. Cook and Miller Polger (2007) include samples of referral forms for services, and referral forms for some services can also be viewed on their websites. A range of personal information is required in line with local/national information governance requirements to ensure eligibility for the service. The areas of interest in terms of abilities, skills and environmental/contextual factors will be dependent on what EAT you are considering. For example, understanding what the home environment physically looks like will be of more concern when considering powered mobility than if you were offering equipment for alternative computer access. Table 4-2 presents some key information that is requested initially when assessing for AT. Referral forms often include questions such as ‘reason for referral’. This helps to determine if the appropriate service has been approached. It can also lead the person triaging referrals to have further conversations with the referrer to advise on options which might be trialled before assessment in the service.

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Table 4-2  Typical Information Gathered Factor

Question

Accommodation

Type of accommodation, e.g., single or two storey, steps to front door/steps inside the home Rented, owned, adapted Layout Living with family/carers, support staff Identify all environments where the activity might take place (e.g., respite services) Local teams/services/doctors/therapists Other equipment in place which might impact on possible solutions All health and long-term condition needs affecting the client and the possible impact of medication on their function Ambulant for how far and on which surfaces or using which mobility aids

Employment/school Professionals involved in care Equipment used Diagnosis and medical issues Mobility

Some services have extended referral forms requesting details of: • Sensory abilities. • Cognition. • Communication skills. • Upper limb movement. • Solutions trialled to date and reasons for failure.    Other services might gather this information at assessment. There is a line to be drawn between gathering enough information such that the correct team can be drawn together and determining whether the purpose of the referral can be achieved, but not so much that referrers are put off applying.

Assessment Time Many services are pressed for time, therefore often short assessment slots are offered in which to gather the information they need and develop a plan to meet the client’s needs. Some centres set aside additional time for new referrals reverting to shorter slots for review sessions. The time needed will be dependent on many factors such as the range of issues you are discussing, the ability of the user to communicate their needs, the expectation of the client and family and the capacity of the client to participate in any assessment exercises you might have. Some services collect information from the referral form and may then have a discussion with relevant stakeholders (e.g., teachers, parents, other services) and minmise options based on this information before meeting with the client. Others have large assessment meetings with all key individuals and allow the process to develop. At the start of any assessment it is useful to have a proforma to go through, which ensures you gather all the information you need, and it is recorded. Goals of the clients as well as key physical measurements such as ranges of movement might be recorded. This

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allows the team to have data they can review when looking at outcomes or changes in the needs of the client. There are some important elements to consider when arranging the clinic: 1. Local teams/support: Invite key people who will support the user in the use of any AT you recommend. This ensures that they are involved in the process and able to offer support. In addition, their experience and knowledge can support the assessment process identifying where issues may arise in the use of the technology in other environments. 2. Location: Determine where it might be best to hold the assessment e.g., home, school, nursing home, care home and etc. The location will show you the environment and highlight issues which may impact the provision. It might be that you need access to workshop facilities to solve the issues listed in the referral form and so the AT centre might be the best location. Ultimately though, the client needs to be able to access the venue and not too tired to participate in the assessment process when they arrive.    Once in the clinic there are some key actions: 1. Communication: Check you understand how your client will communicate with you. Ask what consistent yes and no looks like or how they will tell you they are happy or uncomfortable with what is happening. Remember to phrase questions so that you include the client. Some centres have resources in the clinic room such as alphabet charts, Talking Mats9 or other simple symbol systems when asking about pain, feelings, opinions, etc. (Murphy et al., 2007). 2. Expectations: Ask the client and carers what they are hoping to get out of this assessment. In this way you can ensure that you understand what their expectations are at the outset and can let them know which aspects you can help with. What they are expecting may not be what the referral details but will give you a chance to focus on the needs expressed and signpost them to other services or options if not covered by your service (holistic approach). 3. Views: In the assessment make sure everyone has had an opportunity to say what they think and all views are considered, realising sometimes the outcome will be a compromise. 4. Summarise: Make sure in any summary of the assessment or report there is clarity in the actions of who does what and offer further contact if things do not work out as expected.    In providing AT we are looking to determine: • An appropriate solution for the client for a given activity. • The right access method for the person relevant to the activity. • The appropriate interface presenting the choices to that person for the activity using the right method of access.   

9 https://www.talkingmats.com/.

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In the assessment there are typically several sets of skills/abilities which are observed, measured or discussed. The following outlines some of the areas which need to be discussed.

Physical Skills To use any of the EAT equipment discussed within this book one thing must first be established. When using the device, the client must be comfortable, stable and can reliably access the device, wherever they are and whatever the circumstance, not just in the clinic room where the assessment takes place. The chapter on posture introduces the reader to the need for a ‘functional posture’. This would require the assessment team to know: • Where the user wishes to use the device. • What seating (postural) equipment they would be using. • Whether the device would be required in lying or standing. • How posture changes over time or when moving from one place to another.    Seating assessments in the United Kingdom are undertaken predominantly by wheelchair services. The seating and wheelchair bases that clients are provided with might not be the best position for the activity your client wishes to undertake. Additional support may be required to enable the person to sit in a posture which makes them ready for function and stabilises their pelvis and trunk to promote head control and upper limb reach and operation. Typical measurements taken when assessing for EAT are the range of movement of arms and legs. Assessment of these factors is undertaken by a range of disciplines. If not directly undertaking the assessment, observing the assessment gives the opportunity to identify what movements might work if considering operating alternative access methods, e.g., whether someone has sufficient reliable voluntary movement to effectively operate an adapted keyboard in comparison to operating two switches to scan an on-screen keyboard. Gross movement upper limbs: This is of importance if looking to deliver an access method, i.e., where can a switch be placed where the user can achieve a reliable voluntary method of operation? Is there sufficient movement such that they can move on and off the switch as required? How many switches might they use without accidental activation occurring? Fine motor movement: Gross arm movements require a lot of energy and can take longer to complete. Ideally, a smaller movement might be identified, which can be used to operate a switch or alternative access method. Some key terms associated with defining abilities of fine motor movement10 include: Bilateral integration: Using two hands together (e.g., opening a jar with one hand while the other hand helps by holding the jar).

10 https://childdevelopment.com.au/areas-of-concern/fine-motor-skills/fine-motor-skills/.

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Crossing midline: The ability to move hands from one side of the body across a line running from a child’s nose to the pelvis that divides the body into left and right sides. Hand and finger strength: An ability to exert force against resistance using the hands and fingers that allows the necessary muscle power for controlled movement. Hand/eye coordination: The ability to process information received from the eyes to control, guide and direct the hands in the performance of a task such as handwriting. Hand dominance: The consistent use of one (usually the same) hand for task performance, which allows refined skills to develop. Hand division: Using just the thumb, index and middle finger for manipulation. Object manipulation: The facility to skilfully manipulate tools such as the ability to hold and move pencils, handle scissors with control and the controlled use of everyday tools such as a toothbrush, hairbrush and cutlery. Body awareness (proprioception): This ability enables us to know where our limbs are in space without having to look.    What is also important to observe is the ‘quality’ of the movement. The statement ‘client can lift and lower their head’ or detail of the degrees of movement achievable is meaningless if it takes prompting (i.e., physical or verbal from another) to achieve this or if it takes significant time for the person to respond to the request to raise or lower their head.

Sensory Skills Vision and Hearing. There is a whole range of sensory aids (vision and hearing, electronic and otherwise) which is outside the remit of this book. However, for the types of technology included, knowledge of the client’s vision and hearing is of specific interest. Understanding what the client can see may be difficult. Ophthalmology reports give insight; however, if a client has multiple complex disabilities establishing what they can see may not be accurately defined. Where this becomes even more complex is when the problem is not purely physiological, for example, in the case of cerebral vision impairment. Here we may be left to rely on others’ interpretation of functional vision. Observation of the client in different settings can help to determine what is the primary sense used. For example, noting whether they are most responsive when a person enters the room or only when someone speaks. Information about visual acuity (Snellen tests) report on how well detail is seen with central vision. This will impact on the size of a target that a client can see on a screen and so may limit the number of symbols/options that can be available at one time, impact on the size of screen required and limit where the device needs to be mounted. Knowing whether the client can visually scan and track is also important, i.e., whether they can move their gaze easily from one image to the next across a screen when looking at a set of options presented to them. Also, whether they can track and follow a moving target is important when considering powered mobility control and following cursor movement.

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Visual perception is the ability to give meaning to visual information. Tests to determine this are available (e.g., Motor Free Perception Test and Rivermead Perceptual Assessment Battery); however, these are not appropriate for all client groups and may rely on the client being able to physically/verbally respond. Problems such as identifying an item within a selection can be solved by reducing the number of items in the array or creating a greater contrast between back and foreground or simplifying the symbols. It is important to understand any hearing loss so that visual alerts are put in place of auditory cues. Clients may have equipment to support hearing loss but may not tolerate their use, or only use them in certain settings. Finally, an area to consider within the assessment is the cognitive ability of the client and ensuring that we are supporting them with an activity and equipment appropriate to their level of understanding. Some centres have the opportunity to have input from a psychologist to support this area, who can give guidance on the level of understanding a client has and their ability to learn. To provide the appropriate equipment, we need to know whether the client can retain information about how to operate the equipment and how many steps they might cope with to successfully access a function. In some instances, a client may use a single switch to operate a device successfully. When the task becomes more abstract or complex the successful operation of the device diminishes. Details such as whether the client can read and to what extent, and do they understand text, symbols, pictures or photos, are required. Having gathered all this information, there is an opportunity to consider the range of equipment, the access options and display set-ups which best fit the needs of your client. Each area of AT requires knowledge of the range of equipment available for that activity, and compatibility with other types of AT. Increasingly, we need to consider not only the ‘specialist’ equipment but also mainstream options to meet clients’ needs. Detailed assessment of the physical, sensory and cognitive needs of your client and what support they have in place is then added to this to determine the optimum solution for a given activity. There needs to be an opportunity for the client to trial a range of solutions to determine which fits best with their needs, and training for them and their support workers/family to ensure the equipment is embedded into daily usage. Reviews are then required on a regular basis to ensure the client’s needs continue to be met and support workers remain confident in usage.

Follow-Ups and Reviews Reviews will enable the team that assessed the client to evaluate their prescription and implementation. There are occasions when after having considered all of the foregoing, the process fails. Despite initial success, use of the device diminishes with time and the client abandons the technology (e.g., priority changes, physical ability changes or external factors play a role). The reasons for this may not be apparent at the time of assessment.

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Therefore it is important that time is built into the service model to allow for review to ensure appropriateness of the provision.

Outcome Measures for Assistive Technology This section focuses on why outcome measures are needed, and gives some examples and their limitations when considering AT. Outcome measures are used for a number of reasons. As well as being an essential component for defining the effectiveness of clinicians’ practice (Reiman, 1988), Cole and Hudak (1994) suggested that standardised measures could provide consistent, comparable and valid data. This is pertinent for the field of AT provision as it is a relatively new area and there are insufficient data for activities such as benchmarking of AT devices, the services and comparing different populations of patients. Increasingly, healthcare organisations are being scrutinised by external agencies such as the Care Quality Commission, which concern themselves not only with measures of parameters such as waiting times but also with the quality of care (Lilford et al., 2007). It is therefore important to use standardised outcome measures that capture the patient’s perspective (Lorig et al., 1996; Beaton et al., 2001). They can also provide measurement of the service delivery and its cost effectiveness, and establish the effectiveness of AT over time or steer the new development of AT (Gelderblom and de Witte, 2002). In general in rehabilitation, outcome measures are used to measure actual or perceived ability of an individual to carry out an activity, completing personal care and participating in life situations (Jette et al., 2009). The benefits of AT in that setting were largely unchallenged by policy makers, funders and service providers and mostly assumed to be selfevident (Scherer, 2002; Fuhrer et al., 2003). What was of more interest was the reason for its abandonment and the outcomes of AT service delivery (Murphy et al., 1996; Phillips et al., 1993; Scherer, 1996, 2002) because the abandonment of AT could lead to loss of functional abilities, increase in carers’ costs and culminate in ineffective use of funds by services (Kerrigan, 1997). However, with increasing financial pressures on healthcare organisations the cost of these devices and services needs to be evaluated and therefore interest in outcome measures is growing. While a number of published outcome measures exist for AT, not many are in routine use. Jette et al. (2009) suggest that this could be due to barriers such as lack of familiarity, inadequate training and access to tools. Some of the outcome measures developed to date are discussed next.

International Classification and Function International Classification and Function (ICF) is defined by the WHO (2001) in clinical settings and it is used for functional status assessment, goal setting, treatment planning and monitoring. The literature suggests that components of this can also be used as an outcome measurement in rehabilitation (Jutai et al., 2005; Kohler et al., 2013).

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ICF has two parts: part one is ‘Functioning and Disability’ and part 2 is ‘Contextual Factors’. Part one has two components: (1) Body Function and Structures and (2) Activities and Participation. Part 2 also has two components: (1) Environmental Factors and (2) Personal Factors (WHO ICF, 2001). Within the ICF, AT devices are seen to be an environmental factor used to overcome health state impairments, and health-related limitations and restriction. Disability ‘is regarded not as an impairment of the individual or shortcomings of the environment but instead as arising at the interface of the individual and the environment’ (Bauer et al., 2011). While ICF carefully defines the key concepts related to health and is considered as ‘a meaningful and practical system that can be used by various consumers for health policy, quality assurance and outcome evaluation in different cultures’ (WHO ICF, 2001) it has its own challenges. The Assistive Technology Outcome Measurement System project performed a comprehensive evaluation of ICF for its ability to serve as an organising framework for AT outcomes and concluded the following challenges (Edyburn and Smith, 2002): • The coding system is complicated and subjective. • It lacks specificity. For example, the use of Dycem as a nonslip surface during eating. Consider two patients from different patient groups using this: one with burns to both hands and one with impaired swallowing ability. Both would be scored as having a deficit in the area of eating benefiting from Dycem; however, the functional performance (and appropriate interventions) of these patients is remarkably different. • The system does not adequately consider qualifiers of performance such as safety or task/activity completion time. Therefore an individual could be depicted as not having a deficit, when in fact the person is not functional due to the poor quality of performance. • Overlap and relationship between ‘body structure and functions’ with ‘activities and participation’. Essentially, the ambiguity due to the overlap and relationship of the major ICF categories precludes mapping of an AT device to one and only one category.   

Individually Prioritised Problem Assessment This is a generic tool that can be used for individual goals at the start of service delivery. Prior to intervention the individual is asked to rate the activities that they have problems performing in their daily life. The individual is then asked to rate the same activities a few months post intervention (Wessels et al., 2002). It has been used in service delivery with clients requiring support in mobility, hearing, speech-related communication and self-care. It is reported to fit well into the process of service delivery and facilitates the actual assessment.

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Psychological Impact of Assistive Devices Scale This is a 26-item scale that measures the quality of life impacts of using ATs from a person with a disability’s point of view (Jutai and Day, 2002). The scale is multidimensional and comprised of three main categories. One is competence, which includes the effect of the device on functional independence, performance and productivity. Another category is adaptability, which includes the enabling and liberating effects of AT. The last is selfesteem, which relates to the extent that AT has affected self-esteem, self-confidence and emotional well-being. The Psychological Impact of Assistive Devices Scale is reported to be sensitive to variables such as clinical condition, device stigma and functional features of the device and it provides an indication of the abandonment or retention of the device (Day et al., 2002).

Quebec User Evaluation of Satisfaction With Assistive Technology This is an outcome measure that assesses user satisfaction with two components: the device and the service delivery. The first eight items require the user to score the device based on its weight, safety, simplicity of use, comfort, adjustment, durability and effectiveness. The latter four items are about the user scoring the service and include service delivery, professionalism of the service, repairs and service of the device and follow-up service. The users score their satisfaction on a five-point scale from not satisfied to very satisfied. At the end the users are asked to identify three main items relating to the device that are more important for them (Demers et al., 1996).

Therapy Outcome Measures System This is an 11-point scale that is comprised of four domains of impairment, activity, participation and well-being. The Royal College of Speech and Language Therapists (RCSLT) in the United Kingdom launched a project to support their speech and language therapists in measuring the effectiveness of their services. In 2013 phase one of this project appraised 60 outcome measures, frameworks and systems commonly used by speech and language therapists against set criteria. Therapy Outcome Measures for Rehabilitation Professionals (Enderby et al., 2006) was selected as the best fit. In 2015 the RCSLT Council approved the development of an online tool to support the collection of data. This is known as RSCLT On Line Tool. Following this, the AAC services in the United Kingdom formed a working party to consider using the AAC Therapy Outcome Measures System. This is still in early stages; however, having a standardised outcome measurement tool across all specialist services will enable benchmarking and comparison of different patient groups that have always been difficult due to lack of consistency in data collection. Differences in practice, however, may have an impact on data gathering, i.e., some services review their service users and address any issues identified at the early stages of their intervention and some services rely on others to inform them if a reassessment is required. The point at which this intervention is measured may therefore be different for each service leading to inconsistency in data collection.

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Functional Independence Measure11 This is an 18-item, seven-level scale that assesses physical, psychological and social function. The tool is used to assess a patient’s level of disability, as well as change in patient status in response to rehabilitation or medical intervention. Level 1 is total independence and level 7 is complete dependence. Physical items to be scored are eating, grooming, bathing, dressing upper body, dressing lower body, bladder, bowls, toileting, transfer (bed, chair and wheelchair), toilet transfer, tub/shower and walk or wheelchair. The cognitive items to be scored are comprehension, expression, problem solving, social interaction and memory. This measure has been widely used in a range of rehabilitation areas, including determining the efficacy of upper-limb robotics (Daly et al., 2005).

Goal Attainment Scaling12 This is a technique for quantifying the achievement (or otherwise) of goals set, which are used in rehabilitation. Specific goals are set up between the clinician, the service user and their carers or network of support. This is done by agreeing on priorities and their achievement by an agreed date. They are then scored using a five-point scale of attainment with two points above and two points below the original goal. Normally, three or four goals are identified and if the user achieves the expected level they are scored at 0. If the user achieves better than expected the score is +1, somewhat better, or +2, much better. Where the user achieves less than the expected outcome this is scored at −1, somewhat worse, or −2, much worse (Turner-Stokes, 2009). It is evident that most outcome measures serve a specific purpose capturing data in areas such as general clinical effectiveness, aspects related to the provision of AT or quality of life. AT outcomes could well encompass a composition of various elements such as facilitation of activities of daily living, change in functional independence, effects on participation, functional independence, participation satisfaction and societal and individual gain (Jutai et al., 2005). Variability among AT users and their goals, limited availability and clinical utility of tools contribute to the challenges of capturing outcome measures (De Jonge et al., 2007). Research is limited in this area and where papers have been published they are on a small scale with small participant numbers (Fuhrer et al., 2003; Lenker et al., 2005; Edyburn, 2015). It is, however, recognised that outcome measures are critical in decision making and ensuring quality assurance in service delivery (Douglas et al., 2005; Layton, 2012). Desideri et al. (2015) propose adopting a structured and user centre approach to documenting AT outcomes in everyday practice.

11 https://www.physio-pedia.com/Functional_Independence_Measure_(FIM). 12 https://www.kcl.ac.uk/nursing/departments/cicelysaunders/attachments/Tools-GAS-Practical-Guide.pdf.

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Determining which outcome measure is most suitable in the context of AT is complex because: • Each outcome measure on its own cannot paint a full picture of AT outcomes due to AT’s multidimensional characteristics. • Incorporating outcomes in everyday practice can be time consuming for clinicians and it appears that to gain a good understanding of AT outcomes a few measures may be needed. • The patient group that uses AT may have a combination of disabilities such as visual and hearing impairment, physical impairment, cognitive processing and memory issues along with communication barriers that make the use of these scales more difficult and result in fatiguing them, making the implementation in routine practice more difficult.    Other factors such as progressive conditions, delays due to funding and other obstacles could have a significant impact on AT outcome measures. To address some of these issues, Jutai et al. (2005) propose a new approach that they are calling ‘Taxonomy of Assistive Technology Device Outcomes’. This is expected to accommodate the widest variety of AT applications, type, service, reflecting combination of user population and context for use. In doing this they have identified three domains: effectiveness, social significance and subjective well-being. The advantage of this proposal is that it promotes consistency in the language used for categorising AT outcomes. This will then potentially help make clear why one outcome measure is chosen over others to assess the effect of a particular AT intervention. As stated at the beginning there are strong reasons to use standardised outcome measures; however, it is important that they are: • Easy to use in everyday practice. • Not used as a reward or punishment-based system for commissioning purposes, i.e., payment by results. This is mostly because a direct comparison between benefits and costs cannot be made easily when considering AT. • In addition, they must clearly identify the impact of AT. This is complex in AT provision due to the diversity in variables (e.g., different patient groups, types of equipment and models of provision) and outcome being a multidimensional concept; AT is often not provided in isolation and various services may be involved; and the goals are client specific (Gelderblom and de Witte, 2002).

References Bailey, R.W., 1989. Human Performance Engineering, second ed. Prentice Hall, Englewood Cliffs, NJ. Bauer, S.M., Elsaesser, L.J., Arthanat, S., 2011. Assistive technology device classification based upon the World Health Organization’s, International classification of functioning, disability and health (ICF). Disability and Rehabilitation: Assistive Technology 6 (3), 243–259.

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Beaton, D.E., Davis, A.M., Hudak, P., McConnell, S., 2001. The DASH (Disabilities of the Arm, Shoulder, and Hand) outcome measure: what do we know about it now? British Journal of Hand Therapy 6 (4), 109–118. Bernd, T., Van der Phijl, D.D.E., Witte, L.P., 2009. Existing models and instruments for the selection of assistive technogoy in rehabilitation practice. Scandinavian Journal of Occupational Therapy 16, 146–158. Borg, J., Berman-Bieler, R., Khasnabis, C., Mitra, G., Myhill, W.N., Samant, Raja, D., 2015. In: Assistive Technology for Children with Disabilities: Creating Opportunities for Education, Inclusion and Participation a Discussion Paper. Unicef WHO. Cole, D.C., Hudak, P.L., 1994. Prognosis of non-specific work-related musculoskeletal disorders of the neck and upper extremity. American Journal of Industrial Medicine 29, 657–668. Cook, A.M., Hussey, S.M., 2002. Assistive Technologies. Mosby. Cook, A., Miller Polgar, J., 2007. Cook and Hussey’s Assistive Technologies, third ed. Elsevier. Copley, J., Ziviani, J., 2004. Barriers to the use of assistive technology for children with multiple disabilities. Occupational Therapy International 11 (4), 229–243. Day, H., Jutai, J., Campbell, K.A., 2002. Development of a scale to measure the psychosocial impact of assistive devices: lessons learned and the road ahead. Disability and Rehabilitation 24, 31–37. Daly, J., Hogan, N., Perepezko, E.M., Krebs, H.I., Rogers, J.M., Goyal, K.S., Dohring, M.E., Fredrickson, E., Nethery, J., Ruff, R.L., 2005. Response to upper-limb robotics and functional neuromuscular stimulation following stroke. Journal of Rehabilitation Research and Development 42 (6), 723–736. De Jonge, D., Scherer, M., Rodger, S., 2007. Assistive Technology in the Workplace. Elsevier Mosby, St. Louis, MO. Demers, L., Weiss-Lambrou, R., Ska, B., 1996. Development of the Quebec user evaluation of satisfaction with assistive technology (QUEST). Assistive Technology 8, 3–13. Desideri, L., Bizzarri, M., Bitelli, C., Roentgen, U., Gelderblom, G.J., de Witte, L., 2015. Implementing a routine outcome assessment procedure to evaluate the quality of assistive technology service delivery for children with physical or multiple disabilities: perceived effectiveness, social cost, and user satisfaction. Assistive Technology 28, 30–40. Douglas, H., Swanson, C., Gee, T., Bellamy, N., 2005. Outcome measurement in Australian rehabilitation environments. Journal of Rehabilitation 37, 325–329. Edyburn, D.L., Smith, R.O., 2002. The ATOMS Project: measuring assistive technology outcomes. In: Paper Presented at the 20th Annual Closing the Gap Conference, Minneapolis, MN. Edyburn, D.L., 2015. Expanding the use of assistive technology while mindful of the need to understand efficacy. In: Edyburn, D.L. (Ed.). Edyburn, D.L. (Ed.), Efficacy of Assistive Technology Interventions, vol. 1. Emerald Group Publishing, Bingley, UK, pp. 1–12. Enderby, P., John, A., Petheram, B., 2006. Therapy Outcome Measures for Rehabilitation Professionals, second ed. Wiley, London. Federici, S., Scherer, M., Borsci, S., 2014. Technology and Disability 26 (1), 27–38. Federici, S., Scherer, M., 2017. Assistive Technology Assessment Handbook. CRC Press. Fuhrer, M.J., Jutai, J.W., Scherer, M.J., DeRuyter, F., 2003. A framework for the conceptual modelling of assistive technology device outcomes. Disability and Rehabilitation 25, 1243–1251. Gelderblom, G.J., de Witte, L.P., 2002. The assessment of assistive technology outcomes, effects and costs. Technology and Disability 14, 91–94. Jette, D.U., Halbert, J., Iverson, C., Miceli, E., Shah, P., 2009. Use of standardized outcome measures in physical therapist practice: perceptions and applications. Physical Therapy 89, 125–135. Jutai, J., Day, H., 2002. Psychosocial Impact of Assistive Devices Scale (PIADS) Technology and Disability, vol. 14, pp. 107–111.

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Jutai, J.W., Fuhrer, M.J., Demers, L., Scherer, M.J., DeRuyter, F., 2005. Toward a taxonomy of assistive technology device outcomes. American Journal of Physical Medicine and Rehabilitation 84 (4), 249–302. Kerrigan, A.J., 1997. The Psychosocial Impact of Rehabilitation Technology, Physical Medicine & Rehabilitation: State of the Art Reviews, vol. 11, pp. 239–252. Kohler, F., Connolly, C., Sakaria, A., Stendara, K., Buhagir, M., Mojadidi, M., 2013. Can the ICF be used as a rehabilitation outcome measure? A study looking at the inter- and intra-rater reliability of ICF categories derived from an ADL assessment tool. Journal of Rehabilitation Medicine 45 (9), 881–887. Layton, N., 2012. Barriers and facilitators to community mobility for assistive technology users. Rehabilitation Research Practice, 2012, 9. https://www.hindawi.com/journals/rerp/2012/454195/. Lenker, J.A., Scherer, M.J., Fuhrer, M.J., Jutai, J.W., DeRuyter, F., 2005. Psychometric and administrative properties of measures used in assistive technology device outcomes research. Assistive Technology 17, 7–22. Lilford, R.J., Brown, C.A., Nicholl, J., 2007. Use of process measures to monitor the quality of clinical practice. BMJ 335 (7621), 648–650. Lorig, K., Stewart, A., Ritter, P., Gonzalez, V., Laurent, D., Lynch, J., 1996. Outcome Measures for Health Education and Other Health Interventions. Sage Publication. Mallick, M., Aurakzai, J.K., Bile, K.M., Ahmed, N., 2010. Large-scale physical disabilities and their management in the aftermath of the 2005 earthquake in Pakistan. Eastern Mediterranean Health Journal 16 (Supp.), 98–105. WHO. Murphy, J., Markova, I., Collins, S., Moodie, E., 1996. AAC systems: obstacles to effective use. European Journal of Disorders of Communication 31, 31–44. Murphy, J., Gray, C., Cox, S., 2007. The use of Talking Mats to improve communication and quality of care for people with dementia. Housing, Care and Support 10 (3), 21–28. Nordic Centre for Rehabilitation Technology (NUH), 2007. Nordic Cooperation on Disability Issues. Provision of Assistive Technology in Nordic Countries. Available at: http://www.hinnovic.org/wpcontent/uploads/2008/11/pdf_provisionassistivetechnology.pdf. Phillips, B., Zhao, H., 1993. Predictors of assistive technology abandonment. Assistive Technology 5 (1), 35–45. Reiman, A.S., 1988. Assessment and accountability: the third revolution in medical care. New England Journal of Medicine 319, 1220–1222. Scherer, M.J., 1996. Outcomes of assistive technology use on quality of life. Disability and Rehabilitation 18, 439–448. Scherer, M.J., 2002. The change in emphasis from People to person. Introduction to special issue on Assistive Technology. Disability and Rehabilitation 24, 1–4. Scherer, M., Jutai, J., Fuhrer, M., Demers, L., Deruyter, F., 2007. A framework for modelling the selection of assistive technology devices. Disability and Rehabilitation: Assistive Technology 2 (1), 1–8. Turner-Stokes, L., 2009. Goal attainment scaling (GAS) in rehabilitation: a practical guide. Clinical Rehabilitation 23 (4), 362–370. United States Assistive Technology Act, 1998. Public Law, 105–394. Outline and findings available at: https://www.section508.gov/assistive-technology-act-1998. Verza, R., Lopes Carvalho, M.L., Battaglia, M.A., Messmer Uccelli, M., 2006. An interdisciplinary approach to evaluating the need for assistive technology reduces equipment abandonment. Multiple Sclerosis Journal 12 (1), 88–93. Wessels, R., Persson, J., Lorentsen, O., Andrich, R., Ferrario, M., Oortwijn, W., VanBeekum, T., Brodin, H., de Witte, L., 2002. IPPA: individually prioritised problem assessment. Technology and Disability 14, 141–145.

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World Health Organization (WHO), 2001. International Classification of Functioning (ICF), Disability and Health (ICF). World Health Organization, Geneva. Goal setting and outcomes to determine if the fit is correct. World Health Organisation (WHO), 2011. Summary World Report on Disability. Available at: http:// www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=4&cad=rja&uact=8&ved=2 ahUKEwjS-cex7Y_dAhVHKMAKHceoA-gQFjADegQIARAC&url=http%3A%2F%2Fwww.who. int%2Fdisabilities%2Fworld_report%2F2011%2Faccessible_en.pdf&usg=AOvVaw3wzIaJNWiANSUa WgE6LCLM. World Health Organisation (WHO), 2017. Global Priority Research Agenda for Improving Access to High Quality Affordable Assistive Technology. Available at: http://apps.who.int/iris/bitstream/handle/10665/254660/WHO-EMP-IAU-2017.02-eng.pdf;jsessionid=78838B94CADBB84F07E42E436615E 5C6?sequence=1.

Further Reading Cook, A., Miller Polgar, J., 2015. Assistive Technologies, fourth ed. Elsevier. Stenberg, L., Mathiassen, N.E., Jordansen, I.K., Salminen, A.L., Kotiranta, P.L., Palsdóttir, B., Mørk, T., Flø, R., Leczinsky, C., Estreen, M., 2007. Provision of Assistive Technology in the Nordic Countries, second ed. Nordic Cooperation on Disability Issues (NSH).

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Alternative Access Technologies Paul Nisbet CAL L S CO TL AND ( CO M MU N I C AT I O N , A C C E S S , L A N G U A G E A N D L I T E R A C Y ) , THE UNI VERS I T Y O F E D I N B U R G H , E D I N B U R G H , U N I T E D K I N G D O M

CHAPTER OUTLINE Introduction������������������������������������������������������������������������������������������������������������������������������������� 106 Device������������������������������������������������������������������������������������������������������������������������������������������ 107 Control Site��������������������������������������������������������������������������������������������������������������������������������� 107 Control Interface������������������������������������������������������������������������������������������������������������������������ 107 Selection Set������������������������������������������������������������������������������������������������������������������������������� 109 Direct and Indirect Selection����������������������������������������������������������������������������������������������������� 110 Seating and Positioning������������������������������������������������������������������������������������������������������������� 111 Keyboards���������������������������������������������������������������������������������������������������������������������������������������� 111 Keyboard Connections��������������������������������������������������������������������������������������������������������������� 113 Keyboard Accessibility Options������������������������������������������������������������������������������������������������� 113 Sticks and Pointers���������������������������������������������������������������������������������������������������������������������� 114 Keyguards����������������������������������������������������������������������������������������������������������������������������������� 115 Compact Keyboards������������������������������������������������������������������������������������������������������������������� 115 High Contrast Keyboards and Stickers�������������������������������������������������������������������������������������� 116 Large Key Keyboards������������������������������������������������������������������������������������������������������������������ 117 Ergonomic Keyboards���������������������������������������������������������������������������������������������������������������� 118 Touchscreens����������������������������������������������������������������������������������������������������������������������������������� 118 Touchscreen Accessibility Options��������������������������������������������������������������������������������������������� 119 Styli���������������������������������������������������������������������������������������������������������������������������������������������� 120 Alternative Access to Touchscreen Devices������������������������������������������������������������������������������� 120 Pointing Devices������������������������������������������������������������������������������������������������������������������������������ 121 Pointing Device Connections����������������������������������������������������������������������������������������������������� 121 Pointing Device Accessibility Options��������������������������������������������������������������������������������������� 121 MouseKeys – Controlling the Mouse With the Keyboard������������������������������������������������������� 121 Clicking the Mouse Button�������������������������������������������������������������������������������������������������������� 121 Dwell Select�������������������������������������������������������������������������������������������������������������������������������� 123 Dragging������������������������������������������������������������������������������������������������������������������������������������� 124 Double Clicking�������������������������������������������������������������������������������������������������������������������������� 124 Keyboard Shortcuts and Macros������������������������������������������������������������������������������������������������ 125 Trackballs������������������������������������������������������������������������������������������������������������������������������������ 125 Joysticks��������������������������������������������������������������������������������������������������������������������������������������� 127 Trackpads������������������������������������������������������������������������������������������������������������������������������������ 128 Handbook of Electronic Assistive Technology. https://doi.org/10.1016/B978-0-12-812487-1.00005-3 Copyright © 2019 Elsevier Ltd. All rights reserved.

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Pen Tablets���������������������������������������������������������������������������������������������������������������������������������� 129 Ergonomic Mice�������������������������������������������������������������������������������������������������������������������������� 129 Head-Controlled Pointing Devices�������������������������������������������������������������������������������������������� 129 Mouse Pointer Control With Switches�������������������������������������������������������������������������������������� 130 Mouse Pointer Control With Speech����������������������������������������������������������������������������������������� 132 Eye-Gaze Access������������������������������������������������������������������������������������������������������������������������������ 132 Eye-Gaze Technology����������������������������������������������������������������������������������������������������������������� 133 Assistive Technology Eye-Gaze Systems������������������������������������������������������������������������������������ 133 Eye-Gaze Software��������������������������������������������������������������������������������������������������������������������� 134 Applications of Eye-Gaze Systems��������������������������������������������������������������������������������������������� 135 Selection Set Design for Eye-gaze��������������������������������������������������������������������������������������������� 136 Michael’s Case Study������������������������������������������������������������������������������������������������������������������ 136 Malcolm’s Case Study����������������������������������������������������������������������������������������������������������������� 136 Switch Access���������������������������������������������������������������������������������������������������������������������������������� 136 Stephen Hawking’s Case Study�������������������������������������������������������������������������������������������������� 137 Switch Control Sites�������������������������������������������������������������������������������������������������������������������� 137 Mechanical Switches������������������������������������������������������������������������������������������������������������������ 138 Switch Comfort��������������������������������������������������������������������������������������������������������������������������� 138 Sip-Puff (Pneumatic) Switch������������������������������������������������������������������������������������������������������� 139 Proximity Switches���������������������������������������������������������������������������������������������������������������������� 139 Switch Interfaces������������������������������������������������������������������������������������������������������������������������ 139 Scanning Access�������������������������������������������������������������������������������������������������������������������������� 140 Highlighter Movement Control������������������������������������������������������������������������������������������������� 141 Switch Actions���������������������������������������������������������������������������������������������������������������������������� 141 Error Handling���������������������������������������������������������������������������������������������������������������������������� 142 Switch Settings��������������������������������������������������������������������������������������������������������������������������� 142 Rate Enhancement and Speed of Access���������������������������������������������������������������������������������� 142 Speech Recognition������������������������������������������������������������������������������������������������������������������������ 143 Personal ‘Digital Assistants’������������������������������������������������������������������������������������������������������� 143 Dictation������������������������������������������������������������������������������������������������������������������������������������� 144 Computer Control���������������������������������������������������������������������������������������������������������������������� 144 Alternative and Augmentative Communication���������������������������������������������������������������������� 144 Microphones������������������������������������������������������������������������������������������������������������������������������� 144 Brain–Computer Interface�������������������������������������������������������������������������������������������������������������� 145 Key Points���������������������������������������������������������������������������������������������������������������������������������������� 145 References��������������������������������������������������������������������������������������������������������������������������������������� 146

Introduction In this chapter we conceptualise access technologies according to the model given in Fig. 5-1. The key point here is that the access technology cannot be considered in isolation; it is part of a bigger system that includes the user, the access technology, the device that

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FIGURE 5-1  Assistive technology access model.

is being used and the activity and environment in which it is being used. All these aspects must be taken into account when considering access to assistive technologies. Cook and Hussey regard the complete system in terms of the Human Activity Assistive Technology model (Cook and Hussey, 1995), while Zabala, from a special education perspective, proposes the Student, Environment, Task, Tools Framework, which also emphasises the need to adopt a holistic view of assistive technology (Zabala, 2005).

Device The device refers to the electronic assistive technology device itself: the computer, voice output communication aid, environmental control system or powered wheelchair.

Control Site The control site is the body part or physical action that the user employs to operate the technology; this can be a finger and/or a hand, foot, knee, elbow, voice, mouth, head or eyes, and more. The most common control sites are finger/thumb/hand, as used to access touchscreen, keyboard, mouse or trackpad, although some commentators suggest that recent advances in speech recognition may result in speech becoming the dominant control interface in the future for mainstream digital technologies.

Control Interface The control interface refers to the input device and interface, such as the touchscreen, keyboard, mouse, joystick or eye-gaze camera (Fig. 5-2). The control interface is bidirectional

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and processes information both to and from the user – it presents options and provides a means for the user to choose between them and to interact with the device. The control interface is usually visual, but can also be tactile (e.g., a Braille display) or audible (e.g., screen reader software or auditory scanning). The optimum nature and design of the control interface reflects the device that is being controlled and the function of the assistive technology, in addition to the skills and preferences of the user. For example, an analogue joystick for most people is the most efficient and effective control interface for a powered wheelchair, but it is a slow method of access for a voice output communication aid, for which a touchscreen or other direct method is more efficient. Most people also use different interfaces to access the same device, but for different functional tasks: for example, one might use speech with a digital voice assistant to search the internet, type on a touchscreen keyboard to compose text messages, attach a hardware keyboard for extended writing and interact with digital artefacts such as eBooks using touch and gestures on screen. When considering access for assistive technologies, we must assume that multiple control interfaces may be required for different devices and functions. Identifying the most appropriate control interface requires consideration of the assistive technology device, the user’s skills and preferences and the specific task(s) or activities for which the device will be used. Previously, digital technologies were typically designed for human beings with good fine motor control, 20–20 vision, who were literate and numerate and who could hear, but in recent years this has changed significantly, and designers and manufacturers of mainstream digital technologies now realise that a sizable proportion of their customer base does not conform to this specification. For example, Apple computers, iPads and iPhones now have accessibility options built into the operating system: keyboard and mouse adjustments to enable access, touch accommodations for users who have difficulty with the touchscreen, speech output for reading text on screen, Siri speech recognition, switch access, eye-gaze access and VoiceOver screen reading (Apple, 2017a). The Windows operating system has a similar range of accessibility adjustments and options

FIGURE 5-2  A range of control interfaces: keyboard, touchscreen, joystick, switches.

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(Microsoft, 2017a) while Google’s Android (Google, 2017a) and Chromebook operating systems (Google, 2017c) also provide accessibility tools.

Selection Set The control interface presents and is used to choose from a selection set of items or functions available on the device. The selection set is composed of items.

Items How many items can the user see, understand or accurately target? How many items are required for the task? When typing on a computer keyboard, the selection set consists of 86 or 104 mechanical keys; when entering a number into a smartphone, the selection set is 10 numbers plus ‘call’ on the touchscreen. With speech recognition, the selection set is the vocabulary recognised by the software (i.e., thousands of words); on a powered wheelchair, the selection set with a proportional joystick is either two (the vertical and rotational angles of displacement corresponding to speed and rotation of the wheelchair) or infinite (the number of different positions to which the analogue stick can be placed). The selection set on a dynamic screen voice output communication aid may contain anything between one and over 100 items. The vocabulary is chosen taking into account physical access needs and method; visual considerations; and the user’s language skills. (Fig. 5-3).

Item Size In the case of a visually presented selection set, what size should these items be? A user with inaccurate targeting due to a physical disability or visual impairment may require a larger item size and so a hardware keyboard with large keys may be one solution. Another

FIGURE 5-3  Voice output communication aid selection set with 6 rows × 8 columns of items.

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example is a novice user of eye gaze who is developing eye-gaze skills and who requires larger targets. Conversely, a user with a limited range of movement and accurate targeting may require a keyboard or selection set with small items.

Selection Set Dimensions The number of items in the selection set, and their size, determines the overall dimensions of the selection set. The overall size must be small enough for the user to access – if physical range of movement is restricted as a consequence of, for example, Duchenne’s muscular dystrophy, then a smaller keyboard or selection set may be required.

Item Spacing Spacing items further apart may help users locate the items more easily and may improve accuracy.

Item Representation Items may be represented through: • Orthography (i.e., letters and words). • Pictures, symbols or photographs. • Sounds (as in auditory scanning). • Tactile methods (e.g., Braille).

Fixed or Dynamic Selection Set Examples of fixed selection sets are hardware keyboards and joysticks. A dynamic selection set can change during operation; smartphones, tablets and most voice output communication aids have dynamic screens and selection sets. Dynamic selection sets provide one solution to the problem of accessing more items than can be offered on a single selection set; by dividing the overall vocabulary into several linked selection sets, the number on each set can be reduced, and if required the size can be increased. A smartphone is a simple example of a linked selection set with apps available across several screens.

Direct and Indirect Selection The technology user can make selections using either ‘direct’ or ‘indirect’ selection. Direct selection involves choosing an item by pointing, clicking or tapping on it, or by dictating a specific word. Indirect selection involves carrying out a series of actions to make a selection. Examples of indirect selection are scanning and coded access.

Scanning With scanning, each item in the selection set is presented in turn and the user chooses the required item when it is offered. The items can be presented visually or by auditory means, or both. The control interface is most commonly a switch or switches. Scanning and switch access is covered in more detail in ‘Switch Access’. Compared to direct selection, scanning is generally considered to be slower (Szeto et al., 1993; Koester and Arthanat, 2017) but

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crucially, scanning can be achieved using fewer or less precise control movements than direct selection. Switch scanning is used by people with restricted physical movements, due to, for example, conditions such as spinal injury, motor neuron disease/amyotrophic lateral sclerosis (ALS) or muscular dystrophy. For example, Professor Stephen Hawking utilised a small movement of his cheek to control a single optical switch to access his computer and communication system via scanning (Hawking, 2017). Switch scanning is also utilised by users with impairment of fine motor control who have difficulty targeting or operating a control interface accurately.

Coded Access With coded access, the user generates a code to select the item. A stenotype keyboard and Morse code are the most commonly recognised methods of coded access. Very few coded assistive technology access systems are available commercially (TandemMaster, 2017; WesTest Engineering, 2017) despite studies that suggest they can be faster than scanning with switches (Nisbet, 1996; Anson et al., 2004; Koester and Arthanat, 2017). Anson et al. note that coded access requires greater initial learning than direct access or scanning because the user must memorise the code for each selection, but once mastered it relies on motor learning and recall; the user does not need to attend to the scanning display or interface.

Seating and Positioning Functional and comfortable seating and accessible positioning of technology is essential for effective access (Radell, 1997; Cook and Polgar, 2012). There is little point in investigating complex and sophisticated adaptations unless the basic positioning of the user, the control interface and the device are correct and the user is seated in a stable, comfortable position. Good seating and positioning is a prerequisite for use of technology: refer to the chapter on Seating and Positioning.

Keyboards Until about 2005, mechanical keyboards and static displays were the dominant type of interface found on assistive technologies. For example, the Pathfinder from Prentke Romich Company (Fig. 5-4) was a state-of-the-art voice output communication aid launched in 2000, with a membrane keyboard interface. Scanning and direct selection with an optical pointer were provided via LEDs in each key. Over the last 20 years or so, dynamic displays and touchscreen keyboards have become ubiquitous and now provide the principal interface for most of today’s more complex voice output communication aids, environmental control systems and other assistive technologies. It is notable that touch or dynamic screen devices are barely mentioned in pioneering assistive technology textbooks from the 1990s (Cook and Hussey, 1995; Nisbet and Poon, 1998). The Accent 1400 (Fig. 5-5) is an example of a 2017 dynamic screen communication aid. It is based on a Windows tablet computer running communication and computer access software. It can be accessed using touch, mouse or pointing device, hardware keyboard, switches or eye gaze. The vocabulary can be displayed using text or a variety of symbol-based systems.

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FIGURE 5-4  Pathfinder voice output communication aid, 2000. Courtesy of Liberator Ltd.

FIGURE 5-5  Accent 1400 dynamic screen voice output communication aid, 2017. Courtesy of Liberator Ltd.

However, since hardware keyboards are still supplied with computers and laptops, it is important to understand the full range of keyboard adaptations, adjustments and options. Also, hardware keyboards do have some advantages over on-screen keyboards for some users and some tasks. For example: • A hardware keyboard enables more information to be displayed on the device because screen area is not used for an on-screen interface. • Touch typing may be faster and more accurate on a hardware keyboard, which can be particularly important for blind and visually impaired users.

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• It can be helpful to physically separate the keyboard from the computer screen – for example, a user with low muscle tone may benefit from accessing a small keyboard located close to their torso, with the tablet positioned on a stand or desk at an appropriate ergonomic height for viewing.    Difficulty in accessing the keyboard can result in greater physical effort and concentration, can slow down access and can cause frustration. Sometimes, relatively simple and inexpensive adjustments are all that are required and avoid the need to employ more complex and costly access technologies. For some users, adjusting seating or the position of the device are sufficient measures to enable access. Some users may have less accurate finger or hand control or may access keys unintentionally and may require adaptations to the keyboard or adjustments to the response. As well as adaptations to standard interfaces, alternative keyboards and interfaces are available. These include miniature and ‘expanded’ keyboards as well as devices designed on ergonomic principles.

Keyboard Connections Keyboards typically connect to devices using USB, Bluetooth or a wireless adapter. USB keyboards can connect to Windows, MacOS and Android devices but not directly to iPads; Bluetooth keyboards can be used with iPads or other devices that have Bluetooth built in; and some keyboards and mice are supplied with a (non-Bluetooth) USB wireless adapter.

Keyboard Accessibility Options On most devices, the response of the keyboard can be adjusted to accommodate different physical and visual needs. The typical options available are given in Table 5-1. We use the terminology that is currently employed by Microsoft, Apple and Google for Windows, MacOS, iOS and Android/ Chromebook devices. These settings must be carefully adjusted to suit individual users – this usually requires some trial and error. The physical condition, such as muscle tone and motor coordination, of some users may change from day to day or over a longer period of time, so it is important to monitor use of the keyboard on a regular basis and make adjustments to the filter and other settings accordingly.

Jack’s Case Study Jack has cerebellar ataxia, which affects his fine motor coordination and causes tremor. He finds that a compact keyboard with a keyguard improves his access significantly. He requires the Repeat Delay and Rate set to 0.5 s to avoid unwanted repeated letters, and Sticky Keys to generate shifted keys and control commands, because he cannot hold down two keys at once.

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Table 5-1  Keyboard Access Settings Access Option

What It Does

Why It Is Useful

Slow Keys (acceptance delay)

Slow Keys sets a delay from the time the key or item is pressed to when it is accepted. It therefore filters and ignores short accidental activations. Bounce Keys filters and ignores repeated hits on the same key.

Slow Keys is helpful for users who have difficulty targeting accurately and who accidentally hit the wrong key. It can also be helpful for users with tremor. Bounce Keys is useful for users with tremor or who ‘bounce’ when activating the key. The delay means that the repeated activations are ignored. Often, Bounce Keys is not provided in a system and Slow Keys has to be used instead. It can be helpful to have separate control over Slow Keys and Bounce Keys: when Slow Keys is applied to all activations, it can be irritating because the first activation is delayed. Some users have difficulty releasing a key after they press it, and generate several unwanted activations. Prevent this by increasing the Repeat Delay and Rate, or turn the repeat off completely. Slowing down the Repeat Rate prevents repeated activations if the user has difficulty releasing the key. Particularly useful if you have Slow Keys, Repeat Keys or Sticky Keys switched on. Sticky Keys is helpful for users who cannot hold down two keys at once, for example, who type using a single finger, mouthstick or headpointer.

Bounce Keys

Repeat Keys Repeat Delay

Repeat Delay is the delay before the first repeated keystroke is accepted when a key is held down.

Repeat Keys Repeat Rate

Repeat Rate is the speed at which subsequent keystrokes are accepted when a key is held down. Key Click gives an audible click or sound when the key is pressed and accepted. Sticky Keys lets the user press a modifier key (Shift, Ctrl, Alt, Option, etc.) and then press a second key (e.g., CTRL + o to open).

Key Click Sticky Keys

Sticks and Pointers Mouth and head sticks and pointers were among the very earliest assistive technology control interfaces, and still have a role today. Sticks and pointers are also available for use by hand and can enable access for users who have difficulty extending a finger. They are inexpensive, practical and multipurpose – for example, a mouthstick can both operate a computer keyboard and hold a paintbrush.1

Barrie’s Case Study Barrie has used a Zygo chin pointer since he was 5 years old. Over the years he evaluated a range of access technologies, including enlarged keyboards and a head-operated mouse, but prefers the chin pointer because he finds it faster and more convenient. He uses a compact keyboard with a keyguard mounted on a stand. For mouse control, he has a separate numeric keypad, again with a keyguard, positioned just above the keyboard. He uses MouseKeys software to control the mouse with the number pad. Barrie can generate text 1 Henry

Fraser, artist: http://www.henryfraser.org/.

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at around 10 words per minute (WPM), and has complete independent access to his laptop. This system, with digital versions of his learning materials, enabled him to access the curriculum and participate fully, and independently, at his mainstream school.

Keyguards A keyguard is a metal or plastic plate secured over the keyboard or device with holes cut into its surface. The keyguard helps to prevent keys from being accidentally pressed while the user’s hand moves over the keyboard to locate the desired target. It allows the user to rest a hand on the guard before activating a key. Keyguards can be extremely effective for many users with tremor or poor accuracy, and they are relatively inexpensive and readily available. Keyguards are commercially available with and for standard and compact keyboards (Figs. 5-6–5-8). Manufacturers of specialised assistive technologies such as voice output communication aids and environmental control systems usually offer keyguards with a range of grid sizes. A small number of suppliers (e.g., Lasered Pics2 in North America, Logan Technologies3 in the United Kingdom, Communicate AT in Australia4) offer laser-cut keyguards specifically for particular models of tablets and communication aids apps.

Compact Keyboards Young children or users with a limited range of hand movement as a result of, for example, Duchenne’s muscular dystrophy, arthrogryposis or motor neuron disease, who

FIGURE 5-6  Compact keyboard and keyguard. 2 Lasered

Pics Assistive Technologies: http://www.laseredpics.biz/. https://www.logan-technologies.co.uk/. 4 Communicate AT: http://www.communicateat.com.au/. 3 Logan Technologies:

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FIGURE 5-7  Voice output communication aid keyguard. Courtesy of Tobii Dynavox.

FIGURE 5-8  Custom-made iPad keyguard. Courtesy of Logan Technologies.

have difficulty reaching across a standard keyboard, may benefit from small keyboards or from touchscreen devices where the keyboard or touch interface can be optimally sized. Compact keyboards are also convenient when space is minimal, such as on a wheelchair tray.

High Contrast Keyboards and Stickers Users with visual impairment may benefit from keyboards with a high-contrast key legend or from the addition of high contrast stickers. Keyboard stickers are also available in childfriendly lower case fonts.

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Large Key Keyboards Large key keyboards are generally the same overall size as standard keyboards, but the keys themselves measure around 20 mm2 compared to approximately 12 mm2. Users with physical support needs or motor coordination difficulties due to, for example, cerebral palsy, and who have difficulty accurately targeting keys on a standard keyboard, may be able to use an interface with larger keys, particularly with the addition of a keyguard (Fig. 5-9). These can also be accessible for users with visual impairments as they are available with high contrast lettering. Young children or users with visual or cognitive impairment may benefit from large keyboards with lower case and/or colourcoded keys. Large ‘membrane’ or ‘overlay’ keyboards were in common use for many years (e.g., the British Concept Keyboard and US IntelliKeys), particularly in schools, because the layout could be altered and programmed to match the user’s needs. Layouts with whole words, symbols and pictures, or tactile signifiers could also be created. Membrane keyboards have mostly been superseded by touchscreen devices although the HelpiKeys membrane at the time of writing is still available and offers QWERTY, alphabetic, numeric and mouse control layouts, or custom layouts can be designed and printed out.

Mary’s Case Study Mary attends a mainstream P1 class. She has cerebral palsy, which affects her ability to hold and use a pencil; she can draw simple lines and shapes, but letter formation is difficult and slow. She requires assistive technology to write and record, and prefers a compact keyboard with guard and lower case key stickers.

FIGURE 5-9  Miniature (218 mm × 103 mm), Compact (282 mm × 132 mm) and Jumbo (482 mm × 179 mm) keyboards with keyguard.

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FIGURE 5-10  iPad Air on-screen keyboard.

By way of comparison, the standard iPad Air on-screen keyboard has dimensions of 197 mm × 77 mm in landscape and 147 mm × 60 mm in portrait orientation, i.e., smaller than the miniature keyboard in Figs. 5-9 and 5-10.

Ergonomic Keyboards A variety of keyboards with ergonomic designs is available and may help to improve comfort and reduce the risk of repetitive strain injuries. The basic principle is to split the keys into two halves and then angle them outward toward your hands. Wrist rests are usually built in. Some allow you to adjust the angle and position of each half to the most comfortable position. Maltron manufacture ergonomic keyboards with key layouts designed for more efficient access, for one-handed use or access with a mouthstick. The most common letters are grouped close together in the centre of the keyboard.

Alice’s Case Study Alice is in second year at university and suffers from severe arthritis. She evaluated an ergonomic keyboard and immediately found an improvement. Her hands are supported in a more comfortable position and she experiences less pain and can type for longer periods. However, the biggest improvement in her writing was achieved by using a speech recognition program, which almost completely removes the need to use the keyboard at all.

Touchscreens While hardware keyboards and mice/trackpads remain the most common access tools for desktop or laptop computers, mobile phones, tablets and many assistive technology

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products now offer on-screen displays that are accessed using a touchscreen. The touchscreen fulfils the functions of both the hardware keyboard and the mouse. Touchscreens first started appearing on computer and assistive technologies in the early 1990s. Examples include Apple’s Newton and early Dynavox5 communication aids. After the millennium, touchscreen technology developed rapidly, driven by the emerging smartphone and tablet market, and touchscreens are now inexpensive, robust and reliable. Touchscreen interfaces are fitted to a huge range of devices, from smartphones with 3.5″ screens to interactive touch tables with 84″ screens. Almost all modern ‘high-tech’ voice output communication aids are built around computers or tablets with touchscreens. Most modern touchscreens are capacitive and ‘multitouch’ and are activated when a conductor, such as a human finger, touches the screen. Touchscreen interfaces and on-screen keyboards and have some advantages over hardware interfaces: • The selection set and item size can usually be sized to give optimum access. • They require zero operating pressure. • The selection set may have symbols or images instead of text. • The design and colours may be configurable. • The vocabulary may be presented dynamically on several different selection sets. • The touch response or access method can be adjusted. • Touching an item directly is cognitively easier than using a pointing device such as a mouse or trackball.   

Touchscreen Accessibility Options Users with physical challenges may have difficulties with touchscreens, and a range of accommodations may be available. Table 5-2 lists the most common adjustments. The touch settings offered vary across different devices, apps and software. For example, iOS 10 for iPads and iPhones offers Hold Duration, Ignore Repeat and Select on First Touch and Select on Release within the Touch Accommodations6 settings. Currently, equivalent adjustments are not, however, available on the Windows, Android or Chromebook operating systems. Assistive technology software and apps specifically designed for voice output communication or computer access may have touch settings built in. For example, Proloquo2Go,7 a communication app for iOS, offers Hold Duration, Select on First Touch or Release and visual and auditory cues. Grid 3,8 a communication and computer access program for Windows, offers ‘Touch and hold to activate’ (Hold Duration) with a choice of a

5 Tobii

Dynavox history: http://www.dynavoxtech.com/company/history/. Accommodations with your iPhone, iPad or iPod touch: https://support.apple.com/en-gb/ HT205269. 7 Proloquo2Go Direct Access Method: http://download.assistiveware.com/proloquo2go/helpfiles/5.1/en/#/ section/P2gSectionAccessMethodID. 8 Touch settings in Grid 3: https://thinksmartbox.com/answer/touch-settings-in-grid-3/. 6 Use Touch

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Table 5-2  Touchscreen Access Settings Access Option

What It Does

Why It Is Useful

Hold Duration

Hold Duration sets a time that the user has to tap and hold before the touch is accepted.

Visual feedback or cue Hold or dwell visual feedback

Displays a circle or border around items on screen as they are tracked. Displays a ‘countdown’ timer of the time remaining for hold duration/dwell, as it times out to selection. Provides an auditory click or feedback on initial touch and/or selection.

Hold Duration ignores short accidental taps. It is helpful for users who have difficulty targeting accurately and who accidentally tap the wrong item. Provides visual feedback of the item that is currently being touched. Provides visual feedback while the hold duration or dwell time times out until the item is selected. Provides auditory feedback to confirm when an item is first touched and then selected. This can be particularly helpful when a Hold Duration is specified. Ignore Repeats is helpful for users who bounce or tremor when tapping the screen. This is helpful if you touch and then move before the selection is accepted. This is helpful if you have difficulty targeting with the initial touch, but can drag to the required location and then lift off.

Auditory feedback

Ignore Repeats Select on First Touch Select on Release

Ignore Repeats will filter and ignore any repeated taps within a specified time. Accepts the first location touched as the tap. Accepts the final location touched, when the user lifts up from the screen.

circular or shrinking visual timer, ‘Activate on first item or last item touched’ and ‘Prevent repeat activations’ (Ignore Repeats). The touch and response settings and behaviour of different devices and applications does therefore vary and it is important to be aware of these possibilities when considering access and assistive technologies.

Styli Some users are unable or have difficulty touching the screen accurately but may be able to access the device using a stylus or stick. Since most touchscreens are capacitive, the stylus must provide electrical conductivity between the user’s skin and the touchscreen.

Alternative Access to Touchscreen Devices There are many alternatives for users who cannot access a touchscreen directly. Touchscreen devices based on MacOS, Windows, Android and Chromebook operating systems can be accessed using a mouse or the full gamut of USB and Bluetooth pointing devices, including eye gaze. However, standard mice and pointing devices cannot be connected to an iOS device because they lack a USB port or pointing device capability; the only alternatives to the touchscreen are hardware keyboards, speech recognition (Siri) or scanning with switches.

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Pointing Devices The most common ‘pointing device’ used to access assistive technologies is of course a finger, used to select directly from a hardware keyboard or touchscreen. In this section we consider pointing devices such as mice, trackballs, joysticks and touchpads, and their corresponding settings and adjustments. These control interfaces may be used to control computers, tablets, communication aids and environmental control systems.

Pointing Device Connections The majority of pointing devices connect via USB and so can be used with devices based on Windows, Android or Chromebook operating systems. Wireless and Bluetooth pointing devices are also available.

Pointing Device Accessibility Options The speed, response and behaviour of the mouse pointer can be adjusted to suit a user’s personal physical and visual requirements. Table 5-3 summarises the settings that are available in most operating systems and devices. • Windows accessibility settings.9 • MacOS accessibility settings.10 • iOS accessibility settings.11 • Android accessibility settings.12 • Chromebook accessibility settings.13

MouseKeys – Controlling the Mouse With the Keyboard MouseKeys configures the numeric keypad so that the keys control the mouse pointer and mouse buttons. MouseKeys is built into the accessibility settings on Windows and MacOS. The speed of movement can be set using the MouseKeys Control Panel. MouseKeys is generally slower to use than a mouse or other pointing device where the pointer position is directly related to the device position, but is nevertheless an extremely useful and readily available pointing method (Fig. 5-11).

Clicking the Mouse Button If a user cannot operate the small buttons in the mouse or other pointing device, consider a numeric keypad and MouseKeys to activate the button functions, a separate switch in place of the mouse buttons or ‘dwell click’. 9 https://www.microsoft.com/en-us/accessibility/windows. 10 https://www.apple.com/uk/accessibility/mac/. 11 https://www.apple.com/uk/accessibility/ipad/. 12 https://support.google.com/accessibility/android/answer/6006564?hl=en-GB. 13 https://support.google.com/chromebook/answer/177893?hl=en-GB.

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Table 5-3  Mouse Access Settings Access Option

What It Does

Why It Is Useful

Pointer speed

Adjusts the speed of movement of the pointer on screen.

Snap To

Automatically moves the mouse pointer to the default button in a dialogue box.

Pointer size

The pointer size and colour can be altered.

Pointer visibility

‘Display pointer trails’ leaves a ‘trail’ behind the pointer as it moves. ‘Show location’ highlights the location of the pointer when the CTRL key is pressed. Swaps left and right buttons.

Users who have difficulty pointing accurately may find it easier if the mouse speed is slowed down. This feature can reduce the need for users to move the mouse pointer and therefore increase speed and reduce fatigue. This can be helpful for users who have a visual impairment or find it difficult to see the standard mouse pointer. The pointer visibility options can help users to locate the mouse pointer on screen.

Swap buttons

Double click speed ClickLock Scroll wheel

Adjusts the speed at which a double click is accepted. Holds down the mouse button for a set time to lock the button for highlighting or dragging. Adjusts the speed of scrolling for the scroll wheel if the pointing device has one.

Helpful for left-handed users or people who find it hard to reach the left-hand button on a joystick or trackball, for example. Slows down the double quick speed for users who have difficulty clicking in quick succession. Enables the user to highlight or drag without having to hold the mouse button down. To adjust the sensitivity of the scroll wheel response to the user’s preference.

FIGURE 5-11  Controlling the mouse with MouseKeys on a number pad.

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FIGURE 5-12  Use a separate switch via a USB Switch Interface to click the mouse button.

Adapted mice and pointing devices with switch sockets are available, or most USB Switch Interfaces can generate a mouse click (Fig. 5-12).

Ross’s Case Study Ross struggles to hold and move the standard computer mouse. He uses a USB joystick to control the mouse pointer, but the buttons on the device are too small for him to target accurately. He therefore uses a switch which is plugged into the joystick. Ross has athetoid movements, and exerts considerable force on his equipment. The joystick and switch are both secured to a Velcro tray, which is in turn secured to the desk.

Dwell Select With Dwell Select, the user rests the pointer on the target for a short period of time – say 0.5 s – and then the program ‘clicks’ the button automatically. Dwell Select is available in the Windows Onscreen Keyboard, as Dwell Control on MacOS or as additional software. Chromebooks have a built-in option to automatically click when the mouse pointer stops moving. Dwell Select is often provided as an access option within communication aids or assistive technology software and apps. Windows Dwell Select software: • Dwell Clicker 2.14 • Point n Click.15    14 https://thinksmartbox.com/product/dwell-clicker/. 15 http://www.polital.com/pnc/.

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Dragging A common challenge for some users is that they can hit the mouse or pointing device button, but cannot hold it down to drag items around the screen. There are several options to address this: • Some trackballs and joysticks provide additional latching buttons for dragging. • The Clicklock function within the Windows Mouse Control Panel will lock down the button when it is held down for a set length of time. There is no visual or audible feedback that the button is held down, however. • Dragging can also be achieved with MouseKeys – press the ‘0’ key on the numeric keypad to lock the button down and the ‘.’ key to release it. • Programmable switch interfaces such as Smartbox’s JoyCable/JoyBox and Crick’s USB Switch Interface can be programmed so that a separate switch can provide the drag. • Software tools such as ClickAid16 provide a grid on screen with mouse functions, including a drag button (Fig. 5-13).

Double Clicking Some users have difficulty clicking the mouse button twice in quick succession. The Mouse Control Panel can slow down the double-clicking speed so that two ‘slower’ clicks are accepted. With MouseKeys turned on, the ‘+’ key will double click. Pointing devices with more than one button are usually supplied with software for setting up the spare mouse buttons to give double clicks. Some computer access software tools also offer this feature.

FIGURE 5-13  ClickAid software for operating mouse functions with one click. 16 http://www.polital.com/ca/.

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Keyboard Shortcuts and Macros Another alternative to the mouse is to use the keyboard; this can give almost complete access to a computer. Many of the menus and functions in software and apps running on operating systems offer keyboard shortcuts; instead of using the mouse to pull down the menu and select the item, you can press a combination of keys. Examples of keyboard shortcuts are Open File (CTRL + O), Copy (CTRL + C), and Paste (CTRL + V ). Keyboard shortcuts can increase efficiency and comfort for all users. Users who type with a headpointer or mouthstick, or who require a keyguard, will almost certainly have difficulty with mouse control. Users who cannot hold down two keys at once can press them sequentially using Sticky Keys. • Windows keyboard shortcuts.17 • MacOS keyboard shortcuts.18 • iOS hardware keyboard shortcuts.19

Trackballs With a trackball or rollerball you move a ball with your fingers (or foot, nose, elbow, etc.) and the mouse pointer moves correspondingly. Trackballs may be suitable for people: • Who cannot grasp or move a mouse, but who have good dexterity with hand and fingers. • Who suffer pain or fatigue when moving the mouse (due to RSI or arthritis, for example) – with a trackball less movement of the hand, wrist and arm is required. • Who have poor fine motor control – people with uncontrollable movements and tremor usually find trackballs easier to control than mice. • Who have limited workspace – for example, who use a small wheelchair tray.    Trackballs vary in diameter from between 35 and 75 mm (Fig. 5-14). Smaller balls are more sensitive – the arc of movement required to move the mouse pointer a given distance on screen is smaller than that for a larger ball – and so smaller trackballs require greater dexterity. It is, however, also possible to reduce the mouse speed, which then requires the user to spin the ball further. Some trackballs are shaped to fit the hand, or have wrist and palm rests. There are many different types of trackball available from mainstream technology suppliers and specialist assistive technology providers. Most trackballs are supplied with software for adjusting the response and for programming buttons (e.g., to drag or to double click when a button is pressed once). If you want a trackball and you do not need a button guard it is worth exploring the mainstream devices because they are programmable and often less expensive than the specialist trackballs. 17 https://support.microsoft.com/en-us/help/12445/windows-keyboard-shortcuts. 18 https://support.apple.com/en-gb/HT201236. 19 https://support.apple.com/kb/PH23094?viewlocale=en_AU&locale=en_AU.

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FIGURE 5-14  Small Marble Mouse and larger SimplyWorks trackball with buttons for click and drag.

FIGURE 5-15  Microsoft Windows on-screen keyboard.

Trackballs designed for the assistive technology market may have features such as button guards to prevent accidental activations, separate buttons for functions such as drag and double click and speed adjustment built into the device. They usually also have insert nuts for fixing to trays and tables, and sockets so that switches can be plugged in to generate mouse button clicks.

Jennifer’s Case Study Jennifer is 14 years old and as a result of Duchenne’s muscular dystrophy has limited range of movement in her hands and experiences fatigue. She cannot reach across a physical keyboard and is very successful with a standard Windows on-screen keyboard (Fig. 5-15), which she accesses using a Marble Mouse placed on her lap. She rests her hand on the trackball and she can move the ball with her finger tips. She uses the ‘Hover over keys’ (Dwell Select) facility to click, which is more efficient and requires less physical effort than clicking the button on the trackball.

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Joysticks Joysticks can be used to access a range of assistive technologies and are the most common type of control interface for powered wheelchairs. Joysticks can offer a good option for users who have impaired motor control due to, for example, cerebral palsy, because they require less accurate fine motor control compared to mice or trackballs. Joysticks are available in a wide range of shapes and sizes and can be operated using different parts of the body (Fig. 5-16). They can be controlled using hand, finger, chin or mouth. Some users find a ‘T-bar’ or round handle easier to grasp than the standard ‘stick’ handle. Joysticks to control the mouse pointer are available with USB or wireless connections. The joystick controls motion and speed of the mouse pointer: move the joystick left and the pointer starts to move left; move the joystick back to the centre and the pointer stops. Joysticks are generally slower to use when navigating the screen display than mice, trackballs or trackpads. Most joysticks are analogue or proportional – the further the joystick is moved, the faster the pointer or the wheelchair moves. ‘Switched’ joysticks are also available, usually with four switches that move the wheelchair forward, back, left and right or the mouse pointer up, down, left and right. Switched joysticks are usually terminated with a nine-way D-type socket wired to the industry standard TRACE protocol. They require a corresponding interface for connection to a wheelchair, communication aid, computer or other assistive technology device. Analogue joysticks can provide more accurate control than switched joysticks, but only if the user can control the position of the stick accurately: some people use gross movements to operate a joystick and actually achieve better control with a switched joystick where the speed and acceleration of the movement can be programmed and optimised.

FIGURE 5-16  SimplyWorks wireless joystick with alternative handles, PointIt! Mini USB joystick and mini joystick with push switched joystick.

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Malcolm’s Case Study Malcolm has quadriplegic cerebral palsy, which affects his fine motor control. To access his computer, he uses an analogue USB joystick. He has some difficulty grasping the stick and finds a T-bar handle slightly easier to manage. Malcolm uses his right hand on the stick and his control movement utilises his whole arm rather than his fingers or his hand. The joystick is fitted with a custom-made steel limiter plate that constrains the movement to be up, down, left or right. Malcolm achieves very accurate control over the mouse pointer and he can access everything on his computer independently. To click the mouse button, Malcolm uses a wireless head switch. For typing, he uses an on-screen keyboard with predictor.

Nick’s Case Study Nick is 19 years old and has quadriplegic cerebral palsy. He uses a membrane keyboard with keyguard, and a BJOY switched joystick to control the mouse on his computer. The BJOY is more effective for him than an analogue joystick because the acceleration is programmed to give him slow speed on initial movement, which gives accurate fine control, and faster speed when he holds the stick on, which gives him quicker movement around the screen.

Trackpads Most laptops are fitted with a trackpad – a flat, touch-sensitive surface normally operated using a finger: as you move your finger around the pad, the pointer moves correspondingly. Trackpads are also available as separate pointing devices with USB connection (Fig. 5-17). Trackpads are suitable for people who have difficulty holding or moving the mouse, perhaps due to limited motor range or fatigue, but who have good finger dexterity. People with motor neuron disease, RSI or arthritis may prefer a finger-operated touchpad to a mouse or trackball because less movement is needed to operate it.

FIGURE 5-17  Easy Cat Touchpad.

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Chloe’s Case Study Chloe is 3 years old and has a congenital limb deformity: she has no arms or legs. She does, however, have excellent control over a single left toe. At nursery school, she is using an Easy Cat Glidepoint Touchpad to access the class laptop and access the activities that her peers are enjoying via the interactive whiteboard. The Easy Cat is placed on her seat cushion so that she can access it with her toe. The touch surface measures 61 mm × 46 mm and Chloe can reach across the surface with her toe, and achieve control over the mouse pointer. She taps and drags to operate the mouse buttons. Many trackpads are now multitouch and therefore permit use of gestures to, for example, turn on the drag lock, zoom in and out or scroll.

Trackpad Settings Some common trackpad settings are given in Table 5-4.

Pen Tablets Pen tablets are primarily designed for use with drawing and painting programs and are controlled with a stylus or finger. They are larger than trackpads (e.g., 150 mm × 95 mm compared to a modern laptop touchpad of around 105 mm × 75 mm), which, coupled with the pen, offers very precise control over the mouse pointer. Some people who experience pain when using a mouse prefer a touch tablet and stylus because it requires more complex and fewer repetitive movements and is therefore more comfortable.

Ergonomic Mice Computer mice are available in a large variety of sizes and shapes. Ergonomic mice are claimed to reduce the risk of pain or damage due to repetitive movements, by encouraging healthier positioning and movement.

Head-Controlled Pointing Devices Some people do not have any control over upper or lower limbs (e.g., due to spinal injury), and have good head control. Others, perhaps with cerebral palsy, may be able to move their head more accurately than other parts of their body. Table 5-4  Trackpad Access Settings Trackpad Access Option

What It Does

Why It Is Useful

Tracking speed Tap to click

Adjusts the speed of movement of the pointer on screen. Turns tap to click on or off.

Secondary click

Tap with two fingers to right click.

Users who have difficulty pointing accurately may find it easier if the speed is slowed down. Turning off tap to click may avoid unwanted mouse clicks. Gives access to right click by just using the trackpad.

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FIGURE 5-18  Tracker Pro head-operated mouse.

There are several methods for controlling the mouse pointer on a computer, accessing options on a communication aid of environmental control or driving a wheelchair using head movement: • Head or mouth stick and MouseKeys on the keyboard. This is a relatively slow method and the user may find it hard to watch the pointer moving on screen while targeting the keyboard with the stick. • Head or mouth stylus with a touchscreen. This can give fast access but the screen will have to be positioned close enough to the user’s face so that the pointer can touch it. • Joystick operated by mouth or chin. • Head-controlled pointing system. These are designed specifically for people with disabilities, are easy and intuitive to use and some users find that they give accurate, fast control. They measure the head position and/or orientation using ultrasonic, optical or gyroscopic sensors (Figs. 5-18 and 5-19). • Eye-gaze camera, discussed later in the chapter.    The Tracker Pro hands-free USB mouse detects the position of a reflective dot worn on eyeglasses, a headband or a hat. The user clicks the mouse with a separate switch or Dwell Select. The Quha Zono gyroscopic mouse detects rotation and orientation. The device is wireless and can be mounted on a headband, eyeglasses or neckband. It connects to computers or tablets with USB. The user clicks the mouse with a separate switch or uses Dwell Select.

Mouse Pointer Control With Switches The mouse pointer can also be controlled using single and multiple switches. These systems operate in a similar manner to MouseKeys – press a switch to start the pointer moving and release it to stop – and they are generally not as quick to use as mouse alternatives such as trackballs.

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FIGURE 5-19  Quha Zono head-operated mouse. Courtesy of Quha.

Direct Mouse Control With Multiple Switches If the user can control four or five switches or a switched joystick, they can be connected via a USB Switch Interface to control up, down, left and right movements and the mouse button.

Scanning Mouse Control With One or Two Switches If a user cannot access multiple switches or a switched joystick to control the pointer directly, there are technologies to give control over the mouse using one or two switches using scanning. The Track-IT!20 USB Switch Interface scans each mouse direction in turn. The user clicks a switch when the desired direction is reached and the mouse moves in that direction until the switch is released. The mouse buttons can also be controlled. Switch scanning control of the mouse pointer is built in as standard to MacOS21 and provided in computer access software packages such as Grid3,22 ACAT23 and GrapeVine.24 Single switch control of the pointer is particularly slow so it is important to make use of keystroke equivalents, macros and scanning screen markers to increase speed of access. The development of head-controlled mice and eye-gaze systems has reduced the popularity of switch and scan control of the mouse pointer, but it can still be an important access technique. 20 Track-IT!

mouse control interface: https://www.pretorianuk.com/track-it. switch control to interact with your Mac: https://support.apple.com/en-gb/HT202865. 22 Grid 3: https://thinksmartbox.com/product/grid-3/. 23 Assistive Context-Aware Toolkit: https://01.org/acat. 24 Grapevine Computer Access: http://www.grapevineat.ie/. 21 Use

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Mouse Pointer Control With Speech Digital Assistants Modern computer tablet operating systems offer ‘digital assistants’ such as Siri (MacOS25 and iOS26), Cortana27 (Windows) and Google Now (Android and Chromebook), which can recognise spoken commands. This can reduce the need to use the mouse to start and navigate between different programs and apps. The systems can be used to, for example, start programs, find information on the device, interact with the digital calendar and play music, but they do not provide complete control over the machine using speech.

Speech Recognition The Windows built-in speech recognition28 and Dragon NaturallySpeaking,29 for Windows and MacOS, can start, close and switch between programs, and voice commands can also be used to, for example, control the text cursor for editing text in a word processor and to access the menus. Direct speech control over the mouse pointer is also possible by giving the ‘Mousegrid’ command. Mousegrid displays a transparent grid with nine numbered cells over the screen and the user moves the mouse pointer to that cell by speaking the relevant number. Another numbered grid then appears within the selected window, and the user again selects a cell by voice. This process is repeated until the mouse pointer is located over the required item on the screen.

Eye-Gaze Access Eye-gaze technology enables a user to control the mouse pointer or make selections from a device by looking at a key or icon on screen. Eye-gaze may be suitable for users with significant physical disabilities who cannot access or have difficulty accessing keyboards, touchscreens or traditional pointing devices such as mouse, keyboard or trackball. ­Eye-gaze access systems are used by people with, for example, spinal injury, ALS/motor neuron disease, RETT syndrome or quadriplegic cerebral palsy (Caltenco et al., 2012; Caligari et al., 2013; Borgestig et al., 2016). Eye-gaze can be faster than other methods of access, such as direct selection with a joystick, or indirect methods, such as switches and scanning (Curry et al., 2007), because most users can direct their gaze around a screen very rapidly. However, in a 2017 review of access interfaces, Koester and Arthanat found very little published data on text entry rates by users of eye gaze (Koester and Arthanat, 2017). Eye-gaze involves lower levels of physical activity than other access methods. Most human beings are experts at directing their gaze to objects within the environment, but 25 Use

Siri on your Mac: https://support.apple.com/en-gb/HT206993. on iOS: https://www.apple.com/uk/ios/siri/. 27 Cortana: https://www.microsoft.com/en-gb/windows/cortana. 28 Windows Speech Recognition commands: https://support.microsoft.com/en-us/help/12427/ windows-speech-recognition-commands. 29 Dragon NaturallySpeaking: https://www.nuance.com/. 26 Siri

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using eye-gaze to control technology is quite a different task. Consequently, novice eyegaze users require high levels of concentration, many users experience fatigue and learning to use eye-gaze efficiently can take time (Donegan, 2012; Borgestig et al., 2016). Eye-gaze technology has been researched as a control interface for people with disabilities for many years (Majaranta and Räihä, 2002) and began to become available and affordable from about 2004, when systems such as the Tobii P10 (Tobii Dynavox, 2015) were launched. Since then, the utility of eye-gaze systems in assistive technology has developed rapidly, and the cost has fallen dramatically. Systems are now available from several manufacturers, including Tobii Dynavox, Alea (Alea Technologies, 2017) and Visual Interaction (Visual Interaction, 2017). Consequently, eye-gaze access is becoming a more commonplace method of assistive technology (Päivi, 2011). Eye-gaze technologies are used in other fields such as the study of human–computer interaction, gaming, marketing and consumer research, sports research and virtual reality. Eye-gaze technologies are likely to become a mainstream method of interaction for consumer electronics in the near future. Eye-gaze access systems are arguably more technically complex to configure, learn and use than, for example, a pointing device such as a mouse or trackball. With eye-gaze, the system must be located at an appropriate distance and height relative to the user, the system must be calibrated to the user and the user must learn how to use gaze to interact with the screen and the device. Learning to use eye-gaze effectively requires time and practice, and support from assistants and carers.

Eye-Gaze Technology An eye-gaze access system consists of a camera unit that tracks the reflection of transmitted infrared light from the user’s retina(s). The camera determines the direction of gaze and calculates the precise location of gaze on the device screen. Eye-gaze cameras connect to the assistive technology device via USB, and currently not available for iOS devices. Eyegaze cameras are available as standalone devices or built into dedicated communication aids (Fig. 5-20). To click or select using the eye-gaze camera, the user either rests the gaze on the item for a set time, uses a ‘blink’ or activates a separate switch.

Assistive Technology Eye-Gaze Systems Eye-gaze systems are available integrated into a complete dedicated device such as a voice output communication aid. In addition, they are also available as separate camera units with software and can be attached and installed on a computer, laptop and tablet, e.g., Tobii PC Eye Mini30 (Fig. 5-21) and myGaze Assistive 231 (Fig. 5-22). These units are lightweight and small, easily transported and attached to computers using USB ports. 30 https://www.tobiidynavox.com. 31 http://www.mygaze.com.

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FIGURE 5-20  Eye-gaze access system. Courtesy of Tobii Dynavox.

FIGURE 5-21  Tobii PC Eye Mini. Courtesy of Tobii Dynavox.

Eye-Gaze Software Eye-gaze cameras can be used to control the mouse pointer and access any application on the computer or device, or eye-gaze capability can be built into Alternative and Augmentative Communication (AAC), computer control or other assistive application software. For example, the myGaze Assistive camera is supplied with EyeMouse software that provides control over the mouse pointer and mouse buttons, while the Tobii cameras are available with Windows control software that also provide complete access to the computer.

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FIGURE 5-22  myGaze Assistive 2 camera fitted to a tablet PC. Courtesy of SmartBox.

These eye-gaze computer control software applications offer features such as mouse button control, where the user can select whether to click, double click or drag; zoom, where the system will automatically zoom in on the locus of the users’ gaze, which improves accuracy when accessing small targets; and shortcuts to access the computer via eye-gaze. By using the computer control software, users can access any applications on the machine regardless of whether they are ‘gaze enabled’ or not. Alternatively, eye-gaze control can be built into the application software itself. This approach allows the eye-gaze interaction to be better integrated and more transparent for the user.

Applications of Eye-Gaze Systems Communication Eye-gaze can be used to access voice output communication software. Voice output communication applications such as SmartBox Grid 3, Tobii Dynavox Communicator 5 and PRC Unity are gaze enabled for access using eye-gaze cameras.

Computer Access Eye-gaze cameras can access the computer or tablet for browsing the internet, employment, education or recreation.

Exploration and Early Learning Eye-gaze cameras and applications can provide a learning, exploratory and assessment environment for children and adults with learning disabilities and additional physical or visual impairments. Users with multiple and profound learning difficulties have historically used switch and scan access, and recently eye-gaze has been proposed as offering a more efficient method of access with lower physical demands.

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Assessment Learning to use eye-gaze requires time, practice and patience and eye-gaze-enabled resources and activities are claimed to offer a motivating and engaging route to developing eye-gaze skills. Examples include Look to Learn32 and the Inclusive Eye-gaze Learning Curve.33 Some eye-gaze systems track and record the user’s gaze and so provide educationalists and clinicians with objective data that can give insights into visual and cognitive skills, as well as preferences and motivation.

Selection Set Design for Eye-gaze Eye-gaze access requires some unique considerations for the design of applications and selection sets. Compared to other methods of access that are commonly employed by users with complex physical needs, such as head-operated mice, joysticks or switches, eye-gaze may be faster and physically less demanding. Some users may find it hard to accurately target small items on screen and one solution is to create ‘2 hit’ selection sets composed of fewer items, with larger targets, linked together. The user chooses a group of items, then with the second ‘hit’ the required item. ‘2 hit’ selection sets take advantage of the speed of access of eye-gaze while allowing for less accurate targeting.

Michael’s Case Study Michael is 6 years old and has quadriplegic cerebral palsy. He has been using eye-gaze to access his communication aid since he was four and is now an expert. At first, he used a symbolbased vocabulary, but now he generates his language with a letter keyboard and prediction. He also accesses digital books and learning resources, and uses his device for writing in school.

Malcolm’s Case Study Malcolm is now 14 years old and has been using a joystick to access an on-screen keyboard since he was 4 years old. He has evaluated eye-gaze on at least three separate occasions, and the two most recent trials which were undertaken with representatives of the resellers were extremely positive. However, Malcolm’s experience when evaluating the technology for an extended trial prior to purchase was less successful and he did not feel that eye-gaze offered a practical method of access. The reasons for this lack of success may be more related to support, context and the environment than the eye-gaze technology itself.

Switch Access Switches and switch access systems have a long history for providing access to assistive technologies, dating from the earliest examples of electronic assistive technologies such 32 Look

to Learn eye-gaze activities: https://thinksmartbox.com/product/look-to-learn/. Eye Gaze Learning Curve: http://www.inclusive.co.uk/inclusive-eye-gaze-learning-curve.

33 Inclusive

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as the POSM typewriter in 1960 to the earliest assistive technology computer access systems such as the Adaptive Firmware Card for Apple II in 1982 (Vanderheiden, 2002) and EZ Keys in 1984. A switch access system is composed of four major components: 1. A switch or switches. 2. Switch mounting or positioning equipment. 3. A switch interface. 4. The switch access control interface software.   

Stephen Hawking’s Case Study The physicist Stephen Hawking was one of the world’s best-known users of assistive technology. Professor Hawking used a single infrared switch mounted on his spectacles that detected tiny movements of his cheek (Fig. 5-23). Professor Hawking used the switch to select letters, words and commands from a keyboard on the screen of his tablet PC generated by ACAT software (Hawking, 2017).

Switch Control Sites Switches can be activated by head, hand, arm, knee, foot, leg, shoulder, chin, cheek, eye blink and breath – whichever part of the body or physical action that can be controlled most easily and with good timing. In addition to evaluation of the optimum control site(s), relevant factors to consider regarding the switch itself are: • Type (mechanical, touch sensitive, proximity, pneumatic). • Size. • Activation pressure needed to operate the switch. • Activation travel (how far, if at all, the switch moves before it is activated).

FIGURE 5-23  Switch, mounting, switch interface, tablet PC and ACAT access software.

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FIGURE 5-24  A selection of assistive switches.

• Feedback (whether the switch moves, by how much; auditory feedback; haptic feedback). • Mounting options.

Mechanical Switches The most common type of switch is electromechanical and a very wide range of shapes, sizes and types are available (Fig. 5-24). Assistive technology switches are usually terminated with a 3.5 mm jack plug. Mechanical switches provide feedback – perhaps an audible click or a beep. This feedback can make the switch easier to use. Many mechanical switches provide tactile feedback when activated, and this can help the operator locate and use the switch. These factors may affect how well a particular mechanical switch works for a particular individual. A user with limited strength might prefer a switch which needs minimal pressure and activation travel, while another user with poor proprioception might be helped with a larger, more robust switch that offers greater feedback. Switches are commonly placed on a tray or desk and accessed using a finger or hand. Some users experience difficulty lifting their hand up and then lowering it to activate the switch, and may achieve greater success when the switch is mounted vertically and activated by a lateral movement, or when a flat switch is mounted flush with the table surface (e.g., a touch switch) enabling small wrist rotation movements to activate the switch.

Switch Comfort Switches accessed by head or cheek can be uncomfortable – the switch is typically manufactured from hard plastic, and users with athetoid movements can strike the switch with

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FIGURE 5-25  Softytops switch cover. Courtesy of Smile Smart Technology.

considerable force, causing discomfort or pain. Solutions are to use a soft switch (e.g., Ablenet’s Pillow or Leaf switches34), noncontact proximity switches or fit a soft cover such as Smile Smart Technology’s Softytops35 (Fig. 5-25) over the switch.

Sip-Puff (Pneumatic) Switch A sip-puff switch detects breath movements. The switch can be positioned with a mounting arm or attached to a headset. Sip-puff switches are often used by people with spinal injury or physical disabilities that limit use of upper and lower limbs.

Proximity Switches Proximity switches do not require a physical touch to activate; they can be controlled using, for example, eye blink, facial muscle movement or head or finger movements. Examples are the SCATIR infrared switch that can detect very small movements and ‘head arrays’ commonly used for driving powered wheelchairs, from suppliers such as Stealth, ASL and Dynamic Controls.

Switch Interfaces Purpose-built electronic assistive technologies designed for switch access will usually have 3.5 mm jack sockets to accept switches, but mainstream computers and devices do not have a suitable socket and so require a switch interface.

34 Ablenet

switches: https://www.ablenetinc.com/technology/switches. switch cover: https://smilesmart-tech.com/.

35 Softytops

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FIGURE 5-26  Switch scanning. The orange (grey in print version) highlighter moves from item to item. When the required item is highlighted, the user activates a switch to select it.

A range of switch interfaces that connect to USB ports are available. Some of these emulate a USB keyboard or mouse (i.e., the switch generates a Space or Return keypress, or mouse click) while others are supplied with software that can be programmed to generate keyboard, mouse or gamepad commands. Electronic assistive technologies are typically designed to operate with different types of switch interface, and may use different keys for their operation, and so it is essential to configure the software and switch interface to be compatible.

Scanning Access Scanning is a term used to describe a method of access where items in the selection set are highlighted in turn (Colven and Judge, 2006). When the desired item is highlighted, the user activates the switch to select it (Fig. 5-26).

Simple Scan With a simple scan, each item in the selection set is highlighted sequentially. Simple scan is most suitable for choosing from a small number of items in the selection set.

Group Scan Simple scan is very slow when working with a large selection set, and group scanning offers more efficient and quicker access. Row/column and column/row scanning are common types of group scan (Fig. 5-27).

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FIGURE 5-27  Row/column switch scanning.

Another type of group scan is to highlight half or part of the selection set initially and then use row/column scanning within the selected group. A third type of group scanning is known as ‘quartering’ or ‘halving’ or where the selection set is progressively halved (or quartered) on each switch press until the required item is reached.

Directed Scan Directed scan uses a switched joystick or multiple switches, usually four, to direct the highlighter around the selection set. Once the required item is highlighted, it is selected with a fifth switch or Dwell Select. Directed scan is therefore similar to direct selection using a joystick to control the mouse pointer, but in practice it can be faster and more efficient because the highlighter moves an item at a time and the response and operation of the system can be configured to match the user’s skills and preferences.

Highlighter Movement Control The movement of the highlighter can be controlled by the device (‘Auto Scan’) or by the user (‘User Scan’ or ‘Step Scan’). With Auto Scan, the user activates the switch to start scanning and the highlighter moves at a speed set by the Scan Time. When the required item is highlighted, the user activates the switch to select it. Auto Scan therefore requires a single switch. With User Scan, one switch controls the movement of the highlighter and a second switch selects.

Switch Actions Switch access with scanning typically requires one or two switches, but some systems permit the switches to be configured to have more than one action, by defining separate operations for a ‘short’ versus a ‘long press’. For example, a single switch controlling Auto Scan can be set to select on a short press, and to delete the last operation when the switch is held down for a longer period of time (i.e., the ‘long press’).

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Error Handling Scanning with switches is a slow method of access and errors of selection have considerable detrimental impact on efficiency because of the time required to delete the erroneous selection and then generate the correct command. It is important to design selection sets and configure the system to minimise errors, and to provide mechanisms for the user to delete or cancel incorrect selections.

Switch Settings Scan Time Initial Scan Time Dwell time Debounce time Acceptance time

The time for the scan to move from one item to the next. The time that the first item is highlighted – this gives the user additional time to select the first item. The length of time that the item is highlighted after which it will be selected automatically. Dwell selection is used instead of a separate switch. A time delay that ignores additional switch activations following the initial activation. This filters out mechanical switch bounce or user tremor. The time that the switch must be held down before it is accepted by the system. This can filter out accidental unwanted switch activations.

Rate Enhancement and Speed of Access Switch and scan access is slow: Koester and Arthanat (2017) report text entry rates averaging 1.67 WPM across 14 studies and 34 subjects for scanning users, compared with 15.4 WPM for speech recognition; 12.5 WPM for typing with a standard keyboard; and 4.2 WPM for mouse access to an on-screen keyboard. Therefore it is essential that switch and scan systems minimise errors and provide mechanisms to increase speed of access, reduce switch activations and physical effort and improve ease of use. Speed of access can be increased by considering aspects of the switch and scan mechanism: • Identifying the most suitable switch and switch control site. • Selection set design – for example, by only offering items within the selection set that are required for the task in hand, or by adopting a frequency of use layout, where the most common items or keys can be accessed more rapidly. • Careful adjustment of settings such as Scan Time – clearly, a faster Scan Time will enable faster access, provided that the user can select items accurately.    In addition, there are other techniques that can be explored to increase rate of access. Word prediction reduces the number of selections required to generate text (Higginbotham, 1992) and therefore we might assume that it will increase speed of text prediction when scanning, but this is not strongly supported by the few studies that have been published (Koester and Levine, 1994; Pouplin et al., 2014). The fact that research does not support the use of the technique does not seem to discourage many switch users (e.g., Professor Stephen Hawking) who used word prediction.

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Enhanced speed of text generation may also be achieved by abbreviation expansion (AutoCorrect), where vocabulary is stored in the system under an abbreviation; the user writes the abbreviation, which is then expanded by the access software. Again, there is little published research to support the benefit of this technique. Abbreviation expansion avoids the requirement to look at the list of predicted words displayed (which is what seems to reduce text generation rate with word prediction) and so is likely to improve the rate of text production. It does, however, also increase cognitive demands and memory load. Other rate enhancement techniques and strategies that are employed particularly in speech-generating devices include (Beukelman and Mirenda, 2013): vocabulary and selection set design to give fastest possible access to core vocabulary; phrase storage; and use of multimeaning icons (i.e., Minspeak, as used in the Unity vocabulary from Prentke Romich Company). Refer to the chapter on AAC for more information on these methods.

Speech Recognition Speech recognition has several applications in terms of access to assistive technology: control of devices and environmental control; personal communication for people with dysarthric speech; as a writing tool for users with physical or literacy difficulties; and for access and control of assistive technology. Speech recognition has been researched and applied as an access method for electronic assistive technology for many years with varying degrees of success (Koester, 2001; Hawley, 2002). Early speech recognition systems required considerable training and personalisation to recognise speech, the vocabulary that could be recognised was limited and recognition accuracy was relatively poor (Juang and Rabiner, 2004). Currently, speech recognition systems do not, for most users, require training to the user’s voice; claimed accuracy rates are in excess of 90% (e.g., Microsoft claim an accuracy of 94.9% for conversational speech (Xiong et al., 2017)) and as a result of this and of developments in natural language processing, speech recognition functionality is now available on smartphones, tablets and computer operating systems, as well as dedicated ‘digital assistants’ such as the Amazon Echo, Google Home and Apple HomePod. Speech recognition is now a free or low-cost mainstream technology that is available to all users. This is likely to have significant implications for some users of electronic assistive technology.

Personal ‘Digital Assistants’ Software such as Siri for iOS and MacOS (Apple, 2017b), Google Now (Google, 2017b) and Microsoft Cortana (Microsoft, 2017b) provide speech control for smartphones, tablets and computers. Voice commands can be used to control a limited number of functions on the device: for example, to search and interact with internet services, play music, create diary events and reminders and launch applications by voice. These systems require an internet connection because the recognition of speech into actions takes place on a remote server, not on the user’s own device.

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Amazon Echo, Google Home and Apple HomePod are a variation on the personal digital assistant theme. They offer similar functionality to the smartphone/tablet tools, but in a dedicated hardware package. In addition, they can control home automation systems and therefore offer an option for environmental control; SmartBox offers a grid set so that users with communication impairment can use their voice output device to control the Amazon Echo (Smartbox AT, 2017).

Dictation Suppliers of speech recognition technologies for dictation claim rates of up to 120 WPM, although actual rates are usually considerably slower when taking into account time to compose, review, correct and edit the dictated text. In a recent systematic comparison of studies of assistive technology access interfaces, speech recognition is reported as the quickest, averaging 15.4 WPM (Koester and Arthanat, 2017). Most modern operating systems provide a speech recognition dictation functionality: Siri Dictation on iOS and MacOS; Google Voice Typing; and Microsoft Dictate, for example. Again, an internet connection is required for these systems. These built-in dictation tools do not offer text editing or correction, and so the user must have some other method of selecting and editing misrecognised text. Dragon NaturallySpeaking and Dragon Dictate for Mac, in contrast, do provide control with speech to correct misrecognition errors and to edit and format text by voice.

Computer Control The digital assistant speech recognition systems have limited functionality and do not provide complete control over the device. While they may be extremely effective at what they do for an individual user of electronic assistive technology, in most cases another method of access will also be required. A greater level of device control is provided by Windows speech recognition and particularly by Dragon NaturallySpeaking, which provides dictation, text formatting and editing, integration with Microsoft Office, access to menus and dialogue boxes and mouse control. Windows and Dragon NaturallySpeaking do not require internet access to function, which can be an advantage for some users and applications.

Alternative and Augmentative Communication Speech recognition has been proposed as an access method for personal communication for people with dysarthric speech. VIVOCA is intended to accept disordered speech from the user and ‘translate’ it into synthetic speech output (Hawley et al., 2013).

Microphones Sound quality and consistency are important for accurate speech recognition. Microphones built into smartphones and tablets are usually of high quality, but accuracy

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may be improved through use of a dedicated noise-cancelling headset or external microphone. By placing the microphone close to the user, background noise is eliminated. An external microphone can also be particularly helpful for users with quiet voices or who prefer to speak at a low volume. Microphones are available with standard analogue 3.5 mm audio jack connections, digital USB or Bluetooth connection.

Brain–Computer Interface Brain–computer interfaces (BCI) ‘translate brain activity into new outputs that replace, restore, enhance, supplement, or improve natural brain outputs’ (Huggins and Wolpaw, 2014). BCI can be implantable, i.e., the sensors are inserted within the brain, or noninvasive, where brain signals are acquired using external techniques such as electroenchephalography (EEG) or functional magnetic resonance imaging. BCI as an access method for electronic assistive technology has been studied since the 1990s, and has been proposed as an access method for communication aids, computer access, gameplay and exoskeleton control (Daly and Huggins, 2015). However, reporting on the 2013 BCI Meeting, Daly and Huggins note that while successful trials have been reported in laboratory and home trials, the technology is ‘still clinically immature’ (Daly and Huggins, 2015). Zickler et al. (2011) conducted trials with BCI for computer access and reported good performance but none of the users felt the system was practical for daily use. The intendiX EEG-based BCI36 is a commercially available BCI.

Key Points • Access technologies are a crucial component of an assistive technology system. • Choosing an access technology involves considering the user’s skills and preferences, the device which is to be controlled and the task or function. • Different access technologies may be required for different assistive technologies and functions. • Functional and comfortable seating and positioning are essential for effective use of access technologies. • Developing control skills with an access technology requires time and practice and in many cases support. • Effective access may be achievable with accessibility options that are readily available and built into the device. • Assessment and support for access technologies in many cases requires a multidisciplinary team.   

36 intendiX

brain–computer interface: http://www.intendix.com/.

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References Anson, D.K., Glodek, M., Peiffer, R.M., Rubino, C.G., Schwartz, P.T., 2004. Long-term speed and accuracy of Morse code vs. Head-pointer interface for text generation. In: RESNA 27th International Annual Confence Technology & Disability: Research, Design, Practice & Policy. RESNA, Orlando, Florida. Available at: https://www.resna.org/sites/default/files/legacy/conference/proceedings/2004/Papers/ Research/CAC/MorseVsOnScreen.html. Accessibility - Apple, 2017a. Apple. Available at: https://www.apple.com/accessibility/. Use Siri on Your IPhone, IPad, or IPod Touch - Apple Support, 2017b. Apple. Available at: https://support. apple.com/en-gb/HT204389. Beukelman, D.R., Mirenda, P., 2013. Augmentative and Alternative Communication: Supporting Children and Adults with Complex Communication Needs, fourth ed. Paul H. Brookes, Baltimore, MD. Borgestig, M., Sandqvist, J., Parsons, R., Falkmer, T., Hemmingsson, H., 2016. Eye gaze performance for children with severe physical impairments using gaze-based assistive technology-A longitudinal study. Assistive Technology 28 (2), 93–102 Taylor & Francis. Caligari, M., Godi, M., Guglielmetti, S., Franchignoni, F., Nardone, A., 2013. Eye tracking communication devices in amyotrophic lateral sclerosis: impact on disability and quality of life. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 14 (7–8), 546–552 Taylor & Francis. Caltenco, H.A., Breidegard, B., Jönsson, B., Andreasen Struijk, L.N.S., 2012. Understanding computer users with tetraplegia: survey of assistive technology users. International Journal of Human-Computer Interaction 28 (4), 258–268 Taylor & Francis Group. Colven, D., Judge, S., 2006. Switch Access to Technology: A Comprehensive Guide. The Ace Centre, Oxford. Available at: http://eprints.whiterose.ac.uk/10291/1/SwitchScanningMaster_8_472.pdf. Cook, A.M., Hussey, S.M., 1995. Assistive Technologies: Principles and Practice, first ed. Mosby, St Louis, Missouri. Cook, A.M., Polgar, J.M., 2012. Seating systems as enablers of function. In: Essentials of Assistive Technologies. Elsevier, St Louis, Missouri, pp. 67–96. Curry, H., Woodward, S., Forster, C., Caryer, K., Barker, J., Mcintyre, F., Hewson, T., Zein, P., Moulam, L., Jones, T., Gaskin, A., Bell, H., 2007. Using an eye-gaze system with two primary school pupils with severe accessing difficulties. Communication Matters 21 (3), 2–4. Available at: http://www.communicationmatters.org.uk/sites/default/files/downloads/cmjournals/cmj_vol_21_no_3.pdf. Daly, J.J., Huggins, J.E., 2015. Brain-computer interface: current and emerging rehabilitation applications. Archives of Physical Medicine and Rehabilitation 96 (3 Suppl.), S1–S7. https://doi.org/10.1016/j. apmr.2015.01.007. NIH Public Access. Donegan, M., 2012. Participatory design: the story of Jayne and other complex cases. In: Gaze Interaction and Applications of Eye Tracking. IGI Global, pp. 55–61. Tobii Dynavox, 2015. The History of Tobii. Available at: https://www.tobii.com/group/about/ history-of-tobii/. Android Accessibility Overview - Android Accessibility Help, 2017a. Google. Available at: https://support. google.com/accessibility/android/answer/6006564?hl=en-GB. Google Now. The Right Information at Just the Right Time, 2017b. Google. Available at: https://www. google.co.uk/landing/now/. Turn on Chromebook Accessibility Features - Chromebook Help, 2017c. Google. Available at: https:// support.google.com/chromebook/answer/177893?hl=en-GB. Hawking, S., 2017. The Computer - Stephen Hawking. Stephen Hawking The Official Website. Available at: http://www.hawking.org.uk/the-computer.html.

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Hawley, M.S., 2002. Speech recognition as an input to electronic assistive technology. British Journal of Occupational Therapy 65 (1), 15–20 SAGE PublicationsSage UK: London, England. Hawley, M.S., Cunningham, S.P., Green, P.D., Enderby, P., Palmer, R., Sehgal, S., O’Neill, P., 2013. A voiceinput voice-output communication aid for people with severe speech impairment. IEEE Transactions on Neural Systems and Rehabilitation Engineering 21 (1), 23–31. Higginbotham, D.J., 1992. Evaluation of keystroke savings across five assistive communication technologies. Augmentative and Alternative Communication 8 (4), 258–272. Huggins, J.E., Wolpaw, J.R., 2014. Papers from the fifth international brain-computer interface meeting. Preface. Journal of Neural Engineering 11 (3), 30301 NIH Public Access. Visual Interaction, 2017. Available at: mygaze.comhttp://www.mygaze.com/. Juang, B.H., Rabiner, L.R., 2004. Automatic Speech Recognition – A Brief History of the Technology Development. Available at: http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.90.5614&rep= rep1&type=pdf. Koester, H.H., 2001. User performance with speech recognition: a literature review, assistive technology. Assistive Technology 13 (2), 116–130. Koester, H.H., Arthanat, S., 2017. Text entry rate of access interfaces used by people with physical disabilities: a systematic review. Assistive Technology 1–13 Taylor & Francis. Koester, H.H., Levine, S.P., 1994. Learning and performance of able-bodied individuals using scanning systems with and without word prediction. Assistive Technology 6 (1), 42–53 Taylor & Francis Group. Majaranta, P., Räihä, K.-J., 2002. Twenty years of eye typing. In: Proceedings of the Symposium on Eye Tracking Research & Applications - ETRA ‘02. ACM Press, New York, New York, USA, p. 15. Accessibility Tools for Windows | Microsoft, 2017a. Microsoft. Available at: https://www.microsoft.com/ en-us/accessibility/windows. Cortana. Your Intelligent Virtual Personal Assistant, 2017b. Microsoft. Available at: https://www.microsoft. com/en-gb/windows/cortana. Nisbet, P., 1996. Integating assistive technologies: current practices and future possibilities. Medical Engineering and Physics 18 (19), 193–202. Available at: https://ac.els-cdn.com/1350453395000682/1s2.0-1350453395000682-main.pdf?_tid=5e585c04-daa7-11e7-adb2-00000aacb361&acdnat=15125799 83_5e513eeb47ed4c8752c4507009aa24c3. Nisbet, P., Poon, P., 1998. Special Access Technology. CALL Scotland, Edinburgh, Scotland. Available at: http://www.callscotland.org.uk/downloads/books/special-access-technology/. Päivi, M., 2011. Gaze Interaction and Applications of Eye Tracking: Advances in Assistive Technologies: Advances in Assistive Technologies. Medical Information Science Reference. Pouplin, S., Robertson, J., Antoine, J.-Y., Blanchet, A., Kahloun, J.L., Volle, P., Bouteille, J., Lofaso, F., Bensmail, D., 2014. Effect of dynamic keyboard and word-prediction systems on text input speed in persons with functional tetraplegia. Journal of Rehabilitation Research and Development 51 (3), 467–480. Radell, U., 1997. Augmentative and alternative communication assessment strategies: seating and positioning. In: Glennen, S.L., DeCoste, D.C. (Eds.), Handbook of Augmentative and Alternative Communication, first ed. Singular Publishing Group, San Diego, California, pp. 193–241. Amazon Echo for Grid 3-thinksmartbox.com, 2017. Smartbox AT. Available at: https://thinksmartbox. com/product/amazon-echo-for-grid-3/. Szeto, A., Allen, E., Littrell, M., 1993. Comparison of speed and accuracy for selected electronic communication devices and input methods. Augmentative and Alternative Communication 9 (4), 229–242 Taylor & Francis. TandemMaster, 2017. TandemMaster-Morse-2-USB Interface. Available at: http://www.tandemmaster. org/home.html.

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IntelliGaze, 2017. Alea Technologies. Available at: http://www.intelligaze.com/en/. Vanderheiden, G.C., 2002. A journey through early augmentative communication and computer access. Journal of Rehabilitation Research and Development 39 (6), 39–53. Available at: https://www.rehab. research.va.gov/jour/02/39/6/sup/vanderheiden.html. Darci USB Morse Code Computer Access, 2017. WesTest Engineering. Available at: http://www.westest. com/index.php/2015-02-01-14-22-07/darci-usb. Xiong, W., Wu, L., Alleva, F., Droppo, J., Huang, X., Stolcke, A., 2017. The Microsoft 2017 Conversational Speech Recognition System. Available at: https://www.microsoft.com/en-us/research/publication/ microsoft-2017-conversational-speech-recognition-system/. Zabala, J.S., 2005. Using the SETT Framework to Level the Learning Field for Students with Disabilities. Available at: http://www.joyzabala.com/uploads/Zabala_SETT_Leveling_the_Learning_Field.pdf. Zickler, C., Riccio, A., Leotta, F., Hillian-Tress, S., Halder, S., Holz, E., Staiger-Sälzer, P., Hoogerwerf, E.-J., Desideri, L., Mattia, D., Kübler, A., 2011. A brain-computer interface as input channel for a standard assistive technology software. Clinical EEG and Neuroscience 42 (4), 236–244 SAGE PublicationsSage CA: Los Angeles, CA.

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Environmental Control Alan Woodcock1, Jemma Newman2 1 M EDI CAL ENGI NEERI NG P H Y S I C S - R E H A B I L I TAT I O N E N G I N E E R I N G D I V I S I O N , KIN G’ S CO L L EGE HO S PI TAL NHS F O U N D AT I O N T R U S T, L O N D O N , U N I T E D K I N G D O M; 2 E L E C T R O N I C A S S I S T I V E T E C H N O L O G Y S O U T H W E S T, NO RTH B R I S T O L N H S T R U S T, B R I S T O L , U N I T E D K I N G D O M

CHAPTER OUTLINE Introduction������������������������������������������������������������������������������������������������������������������������������������� 149 Environmental Control Systems���������������������������������������������������������������������������������������������������� 151 Definition of Environmental Controls (EC)������������������������������������������������������������������������������� 151 Reasons for EC Provision������������������������������������������������������������������������������������������������������������ 152 Outline of an EC System������������������������������������������������������������������������������������������������������������� 155 Controller Mode of Operation of Selection Process���������������������������������������������������������������� 159 Historical Development of EC Equipment�������������������������������������������������������������������������������� 164 Alternative Access to Computer Technologies����������������������������������������������������������������������������� 169 Text Entry Methods�������������������������������������������������������������������������������������������������������������������� 169 Cursor Control Methods������������������������������������������������������������������������������������������������������������� 170 Alternative Access for Computer Gaming�������������������������������������������������������������������������������� 173 Assessment for EC Provision���������������������������������������������������������������������������������������������������������� 174 Assessment Domains for EC Provision��������������������������������������������������������������������������������������� 174 Means of access or interface to the user���������������������������������������������������������������������������������� 176 Evidence Base for Effectiveness of EC Provision����������������������������������������������������������������������� 179 Summary������������������������������������������������������������������������������������������������������������������������������������������ 179 References��������������������������������������������������������������������������������������������������������������������������������������� 180 Further Reading������������������������������������������������������������������������������������������������������������������������������ 180

Introduction The history of assistive technology (AT) extends over thousands of years and has seen great evolution as skills and technologies have developed, from crutches to exoskeletons and from prosthetic hooks to multijointed ‘bionic’ hands (Vlaskamp et al., 2012). Bells, ropes and levers have long been used to summon assistance from a different room, to open a window at a height or to release a heavy lock. As well as augmenting physical functions of Handbook of Electronic Assistive Technology. https://doi.org/10.1016/B978-0-12-812487-1.00006-5 Copyright © 2019 Elsevier Ltd. All rights reserved.

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the body, impaired by disease, injury or congenital condition, some AT is aimed at compensating for, or substituting for functional limitations and thereby enabling individuals to fulfil at least some of their daily living functions. For the control of functions in the built environment, the term ‘environmental controls’ (EC) is used, but in the context of this chapter, the term is applied specifically where they are intended to alleviate difficulty or inability to undertake the control function by ‘normal means’ or using ‘standard controls’ due to physical impairment. The means to achieve this is based on the available technology at any given time and therefore is progressively evolving. The impetus for the development and provision of EC comes from the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which requires nation states to ensure means to facilitate access to AT for those who need it to improve independence in daily life and to enable participation in society on an equal basis (Andrich et al., 2013). Although neither a cure nor a control for disease, AT compensates for the functional limitations and is therefore associated with the rehabilitation or health benefits. It is also driven by the personal need and desire of those with such limitations to achieve greater function, autonomy and independence in life. EC equipment provision has been commissioned on a national basis in the United Kingdom initially by the Department of Health and transferred to the NHS in 1995 following recommendations for the establishment of a network of regional services with a model of interworking with community services and social care (BSRM, 1994, 2000). Since 2013 this national commissioning was again re-established with the transfer to NHS England Specialised Commissioning following its creation under the Health and Social Care Act (2012). The associated service specification for EC services in England (NHS England, 2013) sets out the model of provision by multidisciplinary teams at specialist level and provides EC equipment on a free-of-charge loan basis to individuals of all ages who meet the criteria for provision. Furthermore, the provision is to include access to computer technologies separately or in conjunction with conventional EC functions of home control (NHS England, 2013). In the United Kingdom, EC equipment provision is also supported by a national framework agreement for the procurement of the equipment and support services from suppliers (NHS Supply Chain, 2014). Formerly, a very detailed specification for the equipment attracted other manufacturers and gave an ‘assured market’ for suppliers, leading to development of comprehensive products. However, it also leads to some development inertia and potentially dated product functionality. Although altered in more recent years it is more difficult for dedicated products to keep pace with mainstream technologies. NHS provision in England originated when only specialist devices were available to achieve EC provision and has resulted in the procurement framework, supplier network and equipment support service packages described. Now that some EC functionality is

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available through nonspecialist and ‘mainstream’ products, this prompts the need for commissioning guidance over boundaries of equipment funding.

Environmental Control Systems Definition of Environmental Controls (EC) The following are definitions from the literature of the type of equipment within the scope of this chapter. ‘Environmental control systems (ECS) enable persons with impairment to carry out activities within the home without assistance from others and thus live more independently’ (Brandt et al., 2011). Elsewhere they are defined as devices for enabling remote control and operation of electronic and electrical equipment within the living environment to enable independent living (Brandt et al., 2011 – quoting :ISO 9999:2016). The term electronic aids to daily living is used as an alternative to environmental controls for the same equipment in some countries (Brandt et al., 2011; Verdonck et al., 2011; Rigby et al., 2011). For commissioning reasons in England, the impairment which would give rise to the need for provision of EC is caused by a long-term medical condition through disease, trauma or congenital reasons and is delimited to a physical impairment. The resulting loss of functional movement, usually of the lower and upper limbs, is such that the individual is not able to operate standard controls, which are typically hand operated (NHS England, 2013). Lack of control of access due solely to sensory impairment (e.g., vision) is usually funded by different sources. The equipment alleviates the effects of impairment, thus falling under the classification of a medical device. Traditional controllers and systems are generally class 1 medical devices; however, with the adoption of mainstream technologies this is subject to change. The initial scope of ECS was developed over 60 years ago and only considered control over the immediate environment. More recently the advances in connectivity have expanded this to include a social element and enable control over the virtual as well as physical environment. As such, many NHS EC services in the United Kingdom have an expanded remit to include access to computer technologies, as described later in this chapter. This trend is likely to continue with the ever-increasing connectivity of the world and incorporation of sensors and communication into the domestic and communal environment. As a result, the environment is developing from the passive, awaiting control, to an intelligent one with capabilities not just of automatic control (e.g., light operation activated by room occupancy) but also driven by user profiles, location and lifestyle predictions. The technology which is currently considered as specialist access means (i.e., speech recognition, eye tracking and personal biometric identification) is likely to be incorporated as standard features in everyday appliances.

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Reasons for EC Provision Whereas automated control of the environment is increasingly possible, the primary purpose of EC is to enable choice and therefore independence for the individual, with benefits, including: • Improved autonomy of function of the individual, reducing reliance on others for functional control of the home environment. • Supporting independence of residential living. • Improved quality of life for the individual. • Enhanced well-being and psychological status.    There may also be secondary benefits, including: • Improved welfare, health and quality of life of family members or others who are carers (reduced ‘carer strain’). • Alteration in the pattern of care, which enhances the independence of the individual.   

Environmental Control Functions The functions of an ECS (Fig. 6-1) can generally be differentiated into the categories of: • Security. • Communication. • Leisure. • Comfort.    Typical control functions available include: • Call alert (e.g., to a portable pager, alarm sounder or nurse call system). • Emergency call alert (e.g., to a community alarm lifeline or nurse call system). • External door entry control with intercom to identify visitors, with means to release the door lock to allow access. • Telephone (landline) for hands-free loud speaking operation to make and receive calls. • Access to mobile telephone functions. • Home entertainment equipment (e.g., television, CD/DVD music and other media). • Overhead lighting. • Mains power socket operation (e.g., side lamps). • Profiling powered beds and riser/recliner chairs. • Room temperature control (e.g., heaters, fans and air conditioning). • Window, curtain or internal door openers.    There is also potential for: • Basic communication functions (i.e., simple prestored messages).

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FIGURE 6-1  Illustration of a conventional environmental control system.

• Computer-based functions (including social media communication, internet browsing, emails and access to e-books). • Integration to other electronic assistive technology (EAT) devices (i.e., communication aids or wheelchair control systems).

Violet’s Case Study BACKGROUND Violet is in her mid-60s and has had a diagnosis of secondary progressive multiple sclerosis. Her vision is moderate to severely impaired, with selective field effects and fatigue. She no longer stands due to muscle weakness and tone. She is transferred by hoist. Her upper limbs are significantly affected by muscle weakness, tone, intentional tremor and fatigue with reduced hand function. Violet has reduced peripheral sensation, especially in her hands. She has retained some range of movement of her head and neck although somewhat jerky. Violet is articulate but her speech is affected by respiratory capacity, which has become more limited. Violet is interested in current affairs and follows these through television and radio reports. She likes to relax with a good book, which she does by listening to ‘talking books’. Violet lives independently in her second floor flat in a residential block, with carers visiting three times a day for personal care, and a personal assistant at other times for more

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support. She is alone overnight and has a community alarm lifeline telephone for emergency help with a neck worn pendant. Violet relies on a wheelchair for seating and mobility in which she stays for most of the daytime. At times she is able to get her right hand onto the propelling rim of her wheelchair, and adjust her location or orientation within the room, although this movement is limited. Violet has previously used speech recognition software for entering text onto a computer, but this was some time ago and she has not used a computer recently. Her hearing is normal given age-related deterioration. VIOLET’S GOALS AND EXPECTATIONS 1. Control of a landline telephone to answer incoming calls. 2. Making outgoing calls to a number of friends and various carers. 3. Selecting a number of channels on the television in the living room and bedroom. 4. Operating the door entry intercom at the communal entrance gate and the door to the block of flats to identify visitors and allow access. 5. Releasing the door to the flat for visitors. 6. Computer access. ECS INTERVENTION Control of items 1–3 is achieved through the provision of a Possum Freeway control unit and an infrared (IR)-controlled EC telephone in the living room and bedroom, with audio announcement of the menu selection items as Violet prefers to listen to the items as scanned, rather than try to look at the display. A button switch located behind her head is fitted to a flexible ‘gooseneck’ arm attached to the rear of her wheelchair. She is able to operate this easily with rearward head movement, as she prefers not to have the wheelchair headrest fitted when inside. The switch is connected to a remote transmitter attached to the rear of the chair, which relays the switch signal to the EC unit located on the sideboard. The Freeway has a single menu of functions and Violet finds this easier to follow audibly rather than a series of submenus. She also prefers not to have an EC unit fitted onto her wheelchair, but rather to use it remotely from her chair. The challenge of enabling her to access the internet was limited by her visual impairment. The communal door entry system is not compatible for interfacing to an ECS. Also, it was not possible to fit a standalone EC intercom system at the flat door without minor adaptations and permission from the housing managing agent. As Violet already has an established arrangement with the concierge for visitors to gain access, she chose to continue with this. FOLLOW-UP Violet’s hand function deteriorated, and it became increasingly difficult for her to operate the pendant of the community alarm lifeline telephone. An alternative means of activation

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through the EC was made available using radio signals from the EC unit, which could be activated from either room.

Outline of an EC System ECS have developed significantly over the years; however, they began from a core structure, which they continue to follow, as shown in Fig. 6-2.

User Interface This is the means by which the user of the EC device has interaction with it to select and activate a particular function or appliance. Many of the means of access utilise a repeatable voluntary movement by the user. Physiological or sensory modalities may also be used, and much of the clinical assessment role outlined in Chapter 4 is associated with the choice and evaluation of a suitable means of access for an individual. Although EC controller units are predominantly accessed by external switches, some controllers incorporate touchscreens. Some users find switches preferable to modern touchscreens, which they find to be too sensitive and result in multiple or unintended selections. If using a touchscreen, keyguards can be of benefit for some users (Chapter 5).

EC Controller Unit The user interface is connected to the main control unit of the system, the EC controller, either directly by electrical cable or indirectly by remote signal transmissions, i.e., infra red (IR) or radio frequency (RF), Bluetooth or WiFi. The controller usually has a number

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FIGURE 6-2  Component elements of an Environmental control (EC) system.

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of functional roles, although it would also be possible for these to be dispersed between separate equipment modules. The functions of the controller may include some or all of the following: • Receive user selection commands, interfacing with the user’s ‘means of access’. • Display the available EC functional options to the user. Display formats vary widely in size and content magnification, colour versus monochrome, text and/or icons and single or multiple menus of selection items. The unit is usually configured in a manner bespoke to the individual user. • Selection menu configuration settings. • Configurations include type and speed of scan pattern, voice or other prompt options, back light and standby timer.    Functions also include: • Output control signal transmission. • Feedback signal processing and modulation. • Process and logic algorithms, which are discussed in Controller Mode of Operation of Selection Process.    CONTROL TRANSMISSION SIGNALS These transmit control signals to the controlled appliances, which with early systems were by direct electrical cable connection and later progressed to IR and radio protocols of various frequencies. For the second generation of ECS, proprietary radio signals have been used, but latterly standardised protocols have been adopted, including DECT, WiFi, Z-wave and recently Bluetooth. FEEDBACK SIGNALS, PROCESSING AND MODULATION Control modules of the EC system connected to certain appliances may provide feedback to the controller of their status, which is displayed by the controller. The signal interchange is therefore bidirectional. In its simplest form, this is to indicate whether the appliance is on or off, but could extend to different levels of operation. In the case of a remote paging or alert device, the feedback information of interest is that the signal has been received satisfactorily by the receiver and subsequently the alert has been acknowledged by the attending person. In some instances this feedback may be used to modulate the control signals, for instance to stop movement of a profiling bed if a travel limit is reached. The status information conveyed as feedback can also relate to the status of internal componentry of the ECS itself to alert when attention is required or the system is at the threshold of unavailability. Examples of such information include when the battery of the input device transmitter is about to become depleted or the input device has become disconnected. Both are important states of operation, significant to maintaining the user’s access to the functions of the ECS, including the ability to call for assistance.

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These have been standard features in telecare equipment but only recently becoming available for some EC controllers. CONTROLLED APPLIANCES The end of the chain of control of the ECS is the ‘end appliance’ which the user intends to control, or at least some of its functions. Control of some appliances through the EC controller can be achieved directly without the need for intermediate interface units. This occurs when the EC controller is capable of generating the necessary remote control transmission signals for the appliance. Conventional examples are the television and other audio-visual media devices with IR remote handsets, the signals of which can be captured by the circuitry of the EC controller and reproduced. Otherwise, such signals are often available in prestored form as IR code libraries in universal remote control handsets and are now being incorporated into some smartphone devices and WiFi hub devices. Increasingly, protocols such as Z-wave are being adopted. For appliances where direct control from the EC controller is not possible, specialist EC appliances have been developed or intermediate specialist EC peripheral interface units (SPIUs) are used. Both of these options are then capable of receiving the control signals from the EC controller. Examples of specialist EC appliances are IR-controlled telephones (Fig. 6-3), which have been available from a number of the EC suppliers over successive decades. Some have been bespoke products produced by EC manufacturers1; others have been modified versions of commercially manufactured telephones2 usually through the addition of an IR receiver and appropriate configuration changes. An advantage of the former is the potential for including functions of benefit to typical EC users, which may not be available in commercial telephones, such as the announcement of incoming caller, filtering of incoming calls by phone book entry or generation of or prerecorded phrases. However, the main feature of importance for an EC-controlled telephone is the audibility performance for the caller and user when in loudspeaker (hands-free) mode. SPIUs are used where it is not possible to control the appliance directly. This applies to many profiling beds, riser/recliner chairs, nurse call systems, community alarm lifeline telephones and in some instances door openers, gate openers and other actuator systems. The SPIU consists primarily of solid-state relays, which are configured as remote control switches to mimic the operation of the standard handset or connection of the appliance. In the case of nurse call systems and community alarms, a single relay acting as a switch is often sufficient. For connection to profiling beds (Fig. 6-4) and chairs, multiple relays are required, often operated in combination to achieve the desired movement and in conjunction with a time duration limit applied to restrict the amount of movement of the appliance for a single selection. This is for the safety of the user with time limits typically 1 http://possum.co.uk/. 2 https://www.csslabs.de/cms/index.php/en/.

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FIGURE 6-3  Examples of specialist EC-controlled telephones. Left: Modified commercial telephones with infrared remote control: Possum HC2003 based on BT InTouch telephone, RemoSet based on Siemens Gigaset. Right: Purpose-designed EC telephones: Possum Sero, Possum Freedom cordless user unit. (Source: By kind permission of Possum Ltd and CSS MicroSystems GmbH.)

FIGURE 6-4  Environmental control bed control specialist peripheral interface unit for profiling bed control.3

3 http://abilia.org.uk/.

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of 3 s, but adjustable and set within the SPIU itself to avoid reliance on the transmitted control signal for this safety-critical timing. Connection to the bed or chair motor set is achieved using a ‘Y’-branched lead or a multiple port module. This allows the standard handset also to be connected and provide full control. Typically, only some functions are enabled for EC. The SPIU is operated by the EC controller in response to a corresponding user selection. This control in early-generation ECS was by direct cable connection and progressed to remote signal control, either IR or RF with second-generation systems. IR is used for appliances within the single room, including the bed and chair control with a continuous transmission signal. However, RF is typically used for call alarm functions (e.g., pager, nurse call and community alarm) to ensure it can be activated from multiple rooms or locations within the transmission range. Lighting control provides an illustration of the evolution of control techniques with the development of technologies. With first-generation systems, lighting control was achieved using the peripheral interface units to directly switch the mains current supplying the overhead light, initially under direct cable connection from the EC controller and then using the remote RF relay units, which were often positioned in the ceiling or loft void. With the introduction of commercially available IR-controlled wall panel light switches, the same control could be achieved by fitting these as replacement light switches and with IR signal control directly from the EC controller. The next development was IR-controlled light bulbs, so that the adaptation for EC is reduced still further. For extensive home lighting control there are also integrated systems incorporating all house lights with interfaces for control from IR, WiFi and other sources. With home automation, lighting and other functions have become a mass market product, from which EC users can also benefit. MOUNTING AND STANDS FOR EC CONTROLLER AND ACCESSORIES The positioning of some components of the ECS can be crucial to its operation in some applications (Fig. 6-5).4 For instance, the access method (e.g., switch) for the user to be able to operate it and the EC controller for the display to be visible to the user. To satisfy such requirements, various mounting systems and stands have been developed, including attachments to wheelchairs, free standing from the floor or on a table top.

Controller Mode of Operation of Selection Process Single Switch Scanning Access Historically, the majority of EC controllers are ‘single switch scanning access’. The input means has only binary states, on or off, representing whether the input device has been activated or is not activated. In the majority of access devices this is actually an electrical microswitch incorporated into a casing of a variety of sizes, shapes or a bespoke assembly. It is therefore commonly referred to as a ‘user switch’. By selective voluntary movement, 4 http://possum.co.uk/.

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FIGURE 6-5  Illustration of mountings and stands for environmental control equipment.

the user depresses the active surface of the switch and this is their means of selection. By similar means, pneumatic pressure is translated to on/off electrical control for the EC, with the sip/puff switch operated by user respiration or an air-filled pressure pad switch. With only a single degree of freedom (two states), the user is only able to operate one function directly for on/off control. However, by deploying a menu of control functions which is scanned automatically, the two-switch state can be used to start the scan and then stop it at the desired or selected function. The signal transmission to select the item may then be sent immediately on stopping the scan, or require a subsequent user switch press. Hence one of the tasks of the EC controller is the implementation of this process and a logic algorithm for the selection mode of operation. In the first generation of EC units this was achieved in solid-state logic, whereas later generations have embodied software algorithms. Associated with the single-switch scanning process are a number of configuration settings, which allow optimisation to the individual and their abilities. This includes: • Scan rate – the number of scans in a set period (e.g., per minute). • Scan dwell time – time duration that the scan remains on each item awaiting selection. • Input delay time – time from when the switch is activated until the controller registers it. • Minimum switch activation time – time the switch has to be activated to trigger selection. • Start scan delay time – time period after initial switch press that autoscan will commence. • Repeat scan number – how many times each menu is scanned once started.   

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Although apparently rudimentary in concept, the implementation of switch scanning can be a very efficient and compact means to allow user selection, especially when used for the limited range of selection items typical of EC. Experienced users able to respond rapidly with switch selections are capable of managing very high scan speeds, such that access is faster than other multidimensional control methods. SCAN PATTERNS The speed of access can also be enhanced by adopting different scan patterns, especially with larger numbers of selections in the menu. The conventional linear scan (Fig. 6-6) progresses from a start cell, usually top left on a menu screen, and progresses either down or across, one cell at a time, before progressing to the next column or row. The choice of start cell can be varied in some controllers. With multiple rows and columns in a grid pattern, alternative scan patterns become possible to speed up access. With row/column scanning (Fig. 6-7), each row in turn is

FIGURE 6-6  Diagram of a simple scanning pattern.5

FIGURE 6-7  Diagram of row/column and block scanning.6 5 http://abilia.org.uk/. 6 http://abilia.org.uk/.

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highlighted to allow the user to select one using their input device, before then scanning along the chosen row to allow selection of individual control functions. The same process is possible by first scanning whole columns and then by rows within the column. Another alternative is block scanning, whereby a portion of the menu, such as a quarter or quadrant, is highlighted in turn to allow selection of the required block first, before subsequent scanning of the items within the block. However, it is noticeable that these sequential area scanning patterns require a greater number of activations of the switch or input device, sometimes in quick succession, as well as good awareness by the user of the sequence of scanning. Such techniques therefore require consistent switch access and adequate cognitive level. Their suitability to the individual user’s ability therefore has to be determined at assessment or subsequent trial. It is often found that with any cognitive impairment, single-switch scanning with voice prompt announcement of the menu items is most suitable.

Single Switch With Temporal Control The single ‘switch’ input can provide an additional control ‘degree of freedom’ if the user can press and hold the switch for a given period of time. Therefore activation of the user input within a defined ‘short’ duration will result in one control function, whereas if activated for a longer period it will result in a different control function. These can be used to control two different appliances, for instance one for a lamp and one for television standby. Alternatively, short duration activation can be used to control the full selection menu of the EC controller, and long duration activation could trigger an alarm device to call for help. This is a powerful combination, providing access to both comprehensive control functionality and immediate assistance support. This principle has now been utilised on a number of EC controllers. Similarly, control of scanning of the menu can be configured requiring the user to maintain activation of the switch for a prolonged interval. The automatic scan is commenced once the switch is activated and stopped when it is released. The control function on which the scan is stopped is automatically selected and the control signal transmission occurs. This potentially allows a rapid scan and selection process to be achieved. It is particularly suitable for sip/puff pneumatic control via a mouth piece where the user has normal breath control and rapid response is possible.

Two Switch – User Advanced Scanning With two input switches, a different set of operational mode controls becomes possible. As an alternative to the automatic scanning of selections with single-switch control, two switches allow one to advance the scan and the other to select the desired function. This has the effect of the selection process being entirely under the control of the user, especially in terms of the timing of selection. This method is therefore often suitable for someone where recognition and responding to an automatic scan is problematic. This may arise for reasons of delay in sensory response, cognitive executive processing or difficulties with initiating movement to operate the switch. This also applies where the individual movement pattern makes targeting of the switch unreliable, such as with ataxic tremor.

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Multiple-Switch Input The extent of control can also be increased through availability of a greater number of access inputs, although most conventional EC devices have been limited to two-switch input. The four orthogonal directions, as discrete cursor buttons or the directions of a joystick, have been utilised to navigate around selection menus or for each to have separate access functions.

Multidirectional – Proportional Input The term proportional input is typically applied to input devices such as a joystick. The proportionality of input signal relates to the direction it is deflected to and the amount or time of that deflection. With EC, there are few instances where the appliance being controlled has variable states. Potential examples are the dimming of lighting and movement of powered beds or chairs. However, control of these is adequately achieved through single-switch scanning, where a repeated control signal continues to be transmitted for the duration of switch activation. Bed movement is curtailed by an automatically timed cut-off to ensure the safety of the user. Multidirectional and proportional controls are of significant benefit as an input means for the computer-based EC units and especially those with computer application functions, where they can provide the equivalent of a ‘mouse movement’.

Speech Recognition Input Recognition of spoken commands from the user has been much sought after as an access method for EC, especially for those with no upper limb or other means of movement access. However, the availability of such products and the reliability of recognition have until recently been limited (Judge et al., 2009). This is largely because of the size of computer processing capacity required to run the recognition algorithms in real time, compared to that available in circuitry capable of being battery powered and therefore suitable for a portable device. This resulted in devices utilising limited command word sets for recognition. They were also found to be suitable only for users who are able to articulate speech clearly and consistently and have sufficient cognition to be tolerant of the level of error in recognition (Judge et al., 2009). In contrast, speech recognition has developed as a reliable and versatile means of access to computers, where there is sufficient processor power available to run the algorithm programs effectively. Such means may also be used in conjunction with a wireless microphone/headset to provide a remote means of EC within the home, with appliance control transmitters connected to or driven by the computer. As compact personal computers with sufficient processing power become available, then these have the potential to provide a portable device with integral speech recognition. However, much recent technological development has been focused on providing highquality speech recognition via internet connection to utilise computer processor resources ‘in the cloud’. Examples are Siri for iOS, Google for Android and Cortana for Windows smart devices, and those in home hubs (Amazon Echo, Google Home, Apple Home).

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These provide speech recognition with reasonable accuracy for most users and can also be linked to home control devices via WiFi and other networks. However, this speech recognition is entirely dependent on the internet and WiFi connection, with consequent reliability and security concerns. It is also reliant on the user remembering the command and being able to verbalise in a manner the device will understand. It therefore tends not to be recommended for high-priority functions such as calling for help.

Historical Development of EC Equipment First-Generation Systems: 1960s Initial systems were developed at the National Spinal Injuries Centre at Stoke Mandeville Hospital, UK, in response to the needs of patients who would use a whistle suspended from the ceiling to call for assistance. An electronic device known as a patient-operated selector mechanism was developed to enable control of a light and television by means of sip/puff input. This was later extended to control of a typewriter. From this originated the first generation (Fig. 6-8A and B) of EC systems based on individual switch logic.

FIGURE 6-8  Historical EC Systems: Possum (A) PSU1, (B) PSU3.

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Second Generation Systems – ‘Hardwired Fixed Installation Systems’ in the Home: 1980s The advent of microprocessor technology and portable computers brought a new means to implement EC (Fig. 6-9). These systems consisted of a central processor unit and control unit, with a console for display of the scanning menu. The console was often mounted on a wall due to its size. Operation of the EC functions was via direct electrical connection to the peripheral control units through electrical cabling, the network of which often extend throughout the home. The installation of the system was therefore a considerable effort in time and materials and meant that it was unsuitable for short-term needs.

Third Generation – Remote Transmission, Portable Controller Systems: 1990s Further technological development brought low-power consumption electronics and integrated microcontrollers, incorporating all aspects of digital control into a single integrated circuit. These permitted portable controllers that could be taken with the user around the home, using internal rechargeable batteries and onboard signal transmitters for the remote control of the end appliances. This avoided the need for extensive cabling throughout the home, but introduced new issues of battery endurance, standby power saving and remote signal reception. Some of the processing and control functioning of the system became distributed to the more autonomous and discrete peripheral interface units, which were now powered separately. Although some definition of the requirements

FIGURE 6-9  Historic EC systems: Possum PSU6.

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of the EC controllers and systems came from NHS commissioning sources (NHS Supply Chain, 2014) there was no standard imposed for remote signal transmissions, so each supplier developed their own proprietary RF and IR signal protocols and message coding formats. Key EC controllers of this period are shown in Fig. 6-10. Further development occurred during the 2000s by incorporating portable telephony into some EC controllers, for example DECT telephone modules in the Possum Vivo, and sim cards in the GEWA Control Omni (Fig. 6-11). Some of the latest range of Possum controllers include a radio transmitter for the NEAT telecare range using the social care alarm RF of 869 MHz, enabling direct control of some telecare peripherals. These first three generations are described as ‘dedicated’ controllers for EC and were exclusively single- or two-switch input. They largely predated the personal computer and did not offer any integral computer-based functions. A scanning alphabet screen on some

FIGURE 6-10  Examples of portable EC controllers: Possum Companion,7 Steeper Fox8 and Gewa Prog III.

FIGURE 6-11  Examples of enhanced portable EC controllers (Possum Vivo! and Gewa Control Omni).9,10

7 http://possum.co.uk/. 8 http://rslsteeper.com/. 9 http://possum.co.uk/. 10 http://abilia.org.uk/.

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controllers (PSU6 and Companion) allowed for composition of notes and could act as a remote keyboard. A switch emulator interface allowed the user input means to be transferred to a computer or communication aid with single switch scanning software. Priority access to the EC functions was retained through a time-out setting or the user holding down the input switch to return. However, apart from the Possum Primo,7 the method was not continued with later models and was superseded by technological developments. The Gewa Control Prog and Proteur Keo both offered computer mouse and keyboard emulations through remote signals to a receiver plugged into the USB port of the computer. Orthogonal and diagonal directions of mouse movement can then be selected as items on the EC controller menu to initiate movement of the computer cursor. With the Gewa interface, it is also possible to map each keyboard character to a selection on the EC controller menu.

Fourth Generation – Computer-Based EC Controllers: 2010 Onward The next development of EC controllers followed the technological trend with the availability of relatively low-cost tablet computers with reasonable processing power. It became a logical step to utilise these generic platforms for the EC controller and switch scanning software, which became available for each of the operating systems: Apple iOS, Android and Windows (Fig. 6-12). In each case a standard tablet is utilised for operating the specialist scanning software for EC and other functions. Connection to the tablet is achieved remotely via standard radio protocols from a specialist EC module, such as Bluetooth

FIGURE 6-12  Examples of computer-based EC controller units. Top: GridPad on Windows, EvoAssist on IoS. Bottom: Qwayo on Android, Housemate on IoS and Android. (Source with kind permission of Smartbox, Steepergroup, Possum, Unique Perspectives.) EC, Environmental control.

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(HouseMate: iOS and Android and Possum Qwayo: Android only),11 or WiFi (Steeper EvoAssist: iOS only)12, Alternatively via a wired connection, for example, the Grid Pad13 (Windows only). Using a computer-based device as opposed to the dedicated EC controller enables control over other functions: • Computer-based functions such as the internet, emails and social media, e-book readers, documents, spreadsheets, games, etc. are controllable using the same switch input as that for EC, although the extent of control will vary dependent on the app and operating system. • Alternative means of access, other than conventional one or two switches, including some of the computer access input methods (see Alternative Access to Computer Technologies). This is again dependent on the operating system.    There is concern, however, over reliability of operation when using a ‘generic’ computer as the platform for an ECS. Operating systems have improved over the years; however, devices are vulnerable to viruses, hacking, scams and operating system updates. Some of the controllers have built into them a priority function to enable the user to have access to a single function in the event of the tablet or computer failing or suspending operation, such as a call for assistance by the user activating the input means for a longer period.

Fifth Generation Utilising the ‘Internet of Things’ As technological developments continue, our digital world is becoming ever more connected and integrated. It is anticipated that with the advent of 5G networks and the ‘Internet of Things’, hubs for home control will become commonplace, utilising a range of standard communication protocols according to the appliance and control functions, WiFi, Bluetooth, and Z-wave. Special access needs may become incorporated into the hub, as has already occurred with speech recognition access to Amazon Echo, Apple and Google Home devices. Other means of access may well become incorporated, such as gesture recognition. The role of specialist EC equipment and assessment services is likely to migrate to assessing the suitability of the available standard methods and providing interfaces for other specialist or customised access means as required for individuals. However, at the time of writing there is concern over the vulnerabilities introduced by utilisation of such ‘mainstream technologies’ for EC. This is due primarily to the reliance of such systems on the internet for the means of user access (e.g., speech recognition), as well as for system operation. As such, risks are introduced in terms of: • Reliability of the internet connection, including localised WiFi transmission. • Suitability of system operation for people who may have complex conditions (e.g., lack of digital familiarity, memory or reasoning impairments). 11 http://housemate.ie/and

http://possum.co.uk/.

12 http://rslsteeper.com/. 13 https://thinksmartbox.com/.

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• Feasibility of ongoing support of systems where it has to be assumed that the user cannot resolve a fault or problem themselves. • Battery back-up protection in case of electrical supply failure. • Cyber security in terms of generalised denial or phishing attack, as well as individually directed hacking attempts. • Vulnerability to system updates by the providers or suppliers, especially affecting particular features for special access for minority users.    Until product technology has matured and such factors have been resolved, dedicated conventional EC devices are likely to continue to have a role in clinical prescription.

Alternative Access to Computer Technologies Many EC services in the England now provide alternative access to computer options. Most users have similar reasons for needing to access their computer device. This is generally access to the internet and social media, including emails for communication along with other formats such as messaging apps. Once control of the computer is achieved the user is able to access most applications or software titles on that computer such as word processing, spreadsheets, drawing packages along with eReader titles, media players etc. The development of specialist EC devices has occurred during the era of the personal computer, and has progressively taken advantage of this technology. As computers began to form a routine part of the home environment from the 1970s, there was also interest in enabling access to them for those who were unable to use the standard keyboard and cursor input. However, the development of alternative access to a computer has been largely separate from that of the dedicated EC controllers, until recently. As the role of the personal computer grew, so many different and varied methods of access developed, also reflecting the significant role of such devices in people’s lives. This applied especially to people to whom they can provide a communication ‘voice’ and a means for social participation with equality in the virtual world of the internet. Therefore an ECS may be controlled by any of the access technologies used in other types of EAT (Chapter 5).

Text Entry Methods Common text entry methods for computer access are: • Keyboards. • Onscreen keyboards. • Speech recognition: This can be a fast and effective way to input text into a computer. Many systems come with a speech recognition function included but they can vary in accuracy. Depending on their sophistication, many allow the user to edit text, perform commands as well as dictating text.    Voice commands are different to dictation of text in that the command can be assigned a function; this can often be keyboard shortcuts to operate a particular control. For

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example, a specific series of keyboard presses in a computer game will make the character perform a definite action. This can be assigned to a voice command. This is generally standalone software separate to the standard speech recognition packages. • Word prediction. • Keyboard shortcuts and macros.    For more details on these methods, see Chapter 5.

Cursor Control Methods Most computers require control of a cursor, although on some touch screen tablets, the cursor is not always obvious. As with text entry there are a range of hardware options and software support for navigation around the computer. • Alternative physical mice: •  There is a large range of mice available that vary from the standard mouse. This can be as simple as a wireless version of the standard mouse, a joystick style mouse, a roller ball or a track pad. They can vary in size and shape. Many of the mice are controlled with the hands but there are others which can be used with the feet, elbows, chin, head or mouth. •  Head Mouse: the specialist head mice use IR cameras to track the movement of a reflective dot. The dot is usually worn by the user on the forehead, bridge of the nose or glasses, if worn. As they move their head around, the cursor on the screen moves accordingly. •  Gyroscopic Mice: mice that track the movement of the body using a gyroscope and translate this movement into mouse placement on the screen. An example of this is the Quha Zono mouse.14 •  Eye Gaze: IR cameras are used that bounce IR light off the retina. The movement of the reflection is then tracked and is translated into where the user is looking on the screen and the cursor moves accordingly. •  Switch interface: there are different interfaces (USB, micro USB or Lightning, Bluetooth) that enable an external switch to be connected to the computer. This can be used to perform the mouse clicks, keyboard presses or control scanning software. •  Brain Computer Interface (BCI) : this is an emerging technology still within the experimental stages and is not yet being prescribed routinely by services. This detects the EEG signals from particular sections of the user’s brain and translates these into a particular function. • Software controlled mice: •  Speech Recognition: spoken commands can be used to move the mouse cursor around the screen and perform the mouse clicks. ‘Move Mouse Left’ (Dragon Naturally Speaking), ‘MouseGrid’ and ‘Double Click Recycle Bin’ (Windows Speech Recognition). This can be limited in some software packages, often immersive gaming. 14 http://www.quha.com.

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•  Face Recognition: there are Apps and software titles that will utilise a web camera (often the integrated one in the tablet or computer) to recognise facial features. This can then be used to move the mouse cursor around the screen, examples include Camera Mouse.15 •  Mouse Click Emulation: when a physical press of a button to perform a click of the mouse is not possible, software is available that will automatically perform this click. The cursor is placed over the target for a pre-set duration, the click is completed automatically (eg: Dwell Clicker). •  Operating system settings: there are settings in some operating systems to help with text entry on a keyboard. These include Sticky Keys, Filter keys and Toggle Keys. Mouse keys will also allow the user to control the mouse cursor using the numeric keypad.    For more details on these methods, see Chapter 5. There is a range of software available that will change the way the user interacts with the computer interface to potentially simplify it, and to allow engagement of input methods other than a mouse and keyboard. This software can be configured to give the user control over most of the standard mainstream software titles, e.g., internet browsers, social media apps and some environmental controls, if the appropriate hardware is connected to the computer. The interface presented to the user is generally simpler, with fewer options to select from on screen. This can help with the cognitive load for the user and also present onscreen targets that are easier to select, for example, with an eye-gaze camera. It also enables switch users to scan the options to control their computers. There are a number of examples of this software available: one utilised for communication and for access to computer functions is the Grid 3 from Smartbox (Fig. 6-13).

Computer-Based Operating System Adjustments As the more conventional computer evolves, the adjustments possible have changed along with the additional assistive methods for access. There are adjustments in the operating system that can be manipulated to improve access and optimise for alternative hardware. There are also specific easier access programs that can be enabled: • Display options: These were initially introduced to assist people with visual impairment; however, the display options can also be used for those with physical impairment too. For example, increasing the size of fonts or icons makes them clearer for those with visual impairment, but also presents a larger target area for those with physical impairment. It is also possible to adjust display aspects such as contrast and colours to enhance visibility and clarity. • Mouse settings: It is possible to adjust the sensitivity of the mouse; this can help with targeting and movement of the cursor. There are also options such as changing the size and colour of the cursor, locators and tails.

15 http://www.cameramouse.org

and https://sesame-enable.com/.

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FIGURE 6-13  Typical display grids from Grid 3 specialist access software. Top row: Menu grids allow selection of the subgrids with different functions shown below. Second row left to right: Mobile phone/YouTube/EC control TV/Internet. (Source: By kind permission of Smartbox.)16

• Keyboard options: The way the keyboard behaves can also be adjusted; this includes options to hold down certain keys until another is depressed – useful for single finger typists. It can also filter out some unintentional key presses and reduce the repetition of keys. • Speech recognition: Many of the conventional operating systems for computers have had some form of speech recognition software included with them, which has improved considerably in the last few years. For example, from Windows 7 onward, speech recognition can now perform many of the commands for control of the computer as well as the dictation of text. This enables the user to operate the computer using speech, although there are some limitations, including the initial switch-on of the machine and log-in. Also, the training required to achieve the accuracy of recognition to a satisfactory level can be considerable, as can the required cognitive capability of the user. • Access options: These have changed names over the years, from disability access through to ease of access and universal access. The operating systems have differing names; however, they have similar features: •  Onscreen keyboard: The onscreen keyboards can be navigated with the mouse cursor. •  Screen reader: The basic screen readers can be set up to read the link or sentence that the mouse pointer hovers above. •  Magnifier: This will magnify a section of the screen surrounding the mouse cursor.

Tablet-Based Operating System Adjustments Tablet computers and smartphones have become an essential part of modern life; however, the original devices were not adaptable and could not be accessed by anything other 16 https://thinksmartbox.com/.

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than the conventional means via the integral touchscreen. However, since Apple iOS7 and Android v5.0 more has been possible: • Mouse control: It is possible to connect some standard USB mice to Android tablets and operate the cursor. Not all mice will work this way as some need specific drivers that will not run on a tablet, but it gives users the option to control the tablet in a manner similar to a conventional computer. • Switch access: Switch access to a tablet became available in iOS 7 and Android v5.0. An interface can be connected to the tablet, whether this is a hard connection such as Perrero or iHook, or a wireless connection via Bluetooth, the iSwitch, for example. This enables the user to connect one of the range of switches to access the tablet. The majority of apps can be accessed using scanning options; however, there are some limitations. A number of switches can often be connected to the interface and one switch can be set up to have multiple functions. For example, a single press to initiate scanning or select, and a long press to mimic the home button. There is also a form of cursor control under switch control in iOS, using autoscanning crosshairs, which sweeps across the display from left to right and top to bottom, until stopped by the user over the item required. • Speech recognition: Tablets and smartphones have speech access apps included: Siri on iOS, OK Google for Android and Cortana for Windows. There were limitations with the earlier versions as they often needed a physical button press or screen tap to initiate; however, Siri in iOS 11 has become completely hands free, and no longer requires the device to be on mains power.

Alternative Access for Computer Gaming There is a range of options for access to gaming and games consoles for users with physical impairment where using a standard controller is too difficult. In the United Kingdom, charities can assist with assessment, trial and funding of these items. Mounting: The simplest adaption is to mount the standard controller rigidly to stabilise the controller or to remove the need for the user to hold it in their hand. Switch-adapted console controller: Another option is to switch adapt the existing consoles. These are often provided as ‘one-off’ customised adaptations for specific patients (e.g., Special Effects17 and ReMap18). Specialised controller: These are market available controllers, many developed specifically for game play. Examples include the Quadstick,19 a joystick with multiple inputs operated by mouth and breath control. Other options include specialised one-handed joysticks and larger controllers (e.g., Lepmis20).

17 www.specialeffect.org.uk. 18 www.remap.org.uk. 19 http://www.quadstick.com/. 20 www.lepmis.co.uk/.

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Assessment for EC Provision In the majority of countries with widespread provision of EC, along with other AT, the process includes an assessment by experienced practitioners with specialist skills and knowledge. In the United Kingdom this role is usually undertaken by clinical scientists, specialist occupational therapists and rehabilitation physicians, who form part of a multidisciplinary team, which typically also includes clinical technologists, technicians and rehabilitation assistants. The assessment may be undertaken based on a variety of conceptual models (Preston and Edmans, 2016) and utilising established intervention processes. Adopting such a systematic approach has been shown to improve the outcomes (Desideri et al., 2013). The assessment incorporates consideration of a range of factors or domains which influence the prescription choice for that individual. It identifies the needs and goals for EC prescription and explores how these may be met. Measurable goals established by or with the user can form part of a rehabilitation plan and be used to evaluate the provision of the equipment and its configuration or customisation for the user (Dahlberg et al., 2014). The assessment may also identify the need for other AT and the potential for linking between devices of different functions, but sharing a common means of access. This may also result in the option of an integrated system such as for EC with augmentative and alternative communication and/or wheelchair control, as described in Chapter 10.

Assessment Domains for EC Provision The domains covered in the assessment typically include the following. Patient related: • Medical diagnosis, comorbidities, prognosis, rate and manner of change, relevant medications and interventions by other health services. • Functional movement and capabilities (especially upper limbs and hand function), including levels of coordination, tone and fatigue – primarily to identify the means of access for EC. • Sensory abilities, vision, hearing, sensation (especially of the hands). • Patient understanding: This will include some evaluation of cognitive and memory function as well as learning more about the patient’s understanding of technology and their capacity to learn new information and patterns of activity. • Communication abilities and methods (including any barriers). • Physiological and emotional well-being, including the motivation to make use of EC equipment independently and in a sustained manner. • Patient goals: Establishing what the patient wants to achieve with the EC system provision, identifying measurable goals and prioritising these if necessary.    Social situation: • Social circumstances and interactions – coresidents, pattern of carer support and availability of support for set-up of EC equipment if required.

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• Risk aspects: Times alone, means of summoning assistance and means of carer/entry control. • Pattern of life and routines, community involvement, outdoor and indoor activities and hobbies and interests. • Current means of entry/exit from a property for patients and visitors.    Environmental: • Local environment: The physical space for the patient and other residents to ensure sufficient and appropriate room to install EC equipment and for satisfactory ongoing operational use. To ensure enough mains electrical power points for EC equipment and availability of telephone connection if required, there must be local support to assist with the equipment. This level and availability will influence the prescription choice. • External agencies: It is essential that EC services are able to work with agencies responsible for the property (e.g., local authorities, housing associations, other specialist services or charities). • Identification of any minor adaptation work required on a patient’s home for EC provision, such as additional mains sockets, door lock release, door openers, etc. and providing advice when extensive adaptation work is being done for possible future EC installation.    Equipment and technology: • Community alarm and telecare equipment provision. • Other EAT provision and means of access (powered wheelchair, communication aids; consider for possible interfacing, integration or other equipment for EC to be interfaced with: door entry control, window, curtain openers, etc.). • Liaising with local occupational therapy equipment stores or charities regarding any requirement for interfacing EC with hospital beds and riser/recliner chairs, wheelchair controls, local community alarm, lifeline/telecare services, etc. • Existing technology and current means of access: What computer does the patient have (desktop/laptop/tablet/smartphone), running which operating system (Windows/ Linux/Apple or iOS/Android, etc.)? What home entertainment equipment does the patient have? Are broadband and WiFi in place? • Working with the patient, their families, charities and professionals when a patient is looking to purchase a new computer.    Assessment scales or instruments may be used in whole or in part, especially to evaluate the level of cognitive ability and memory function, which will affect the suitability and eventual effectiveness of computer access provision; examples include Addenbrooke’s Cognitive Examination, Montreal Cognitive Assessment Screen and Edinburgh Cognitive and Behavioural ALS Screen scales. Information from these assessment domains will determine the EC equipment prescription to meet the identified needs for the individual. Various factors identified in each

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of the domains will influence the choices of options for the constituent parts of the EC provision as follows: • Means of access or interface to the user to allow selection of control functions. • Equipment specification to meet the control needs of the individual. • Operational aspects and management of risk.   

Means of access or interface to the user The means of access is also influenced by the task to be undertaken (e.g., EC vs. computer access). Simple on/off control or operation of autoscanning EC requires only a single switch. However, in seeking to access a computer and internet, a direct method of access is preferable where possible and ideally proportional movement/action with fine motion control as well. Hence head mouse, eye-gaze or joystick movement may offer greater accessibility options than switches for some individuals. It should be noted that the intensity and frequency of selections is greater when accessing computer-based functions than EC functions, which tend to be infrequent and irregular. Where physical movement is very limited or not consistent, then detection of physiological changes may form a means of access to technology. Examples include electrical signals of muscle initiation or electrical signals from brain activity. Speech recognition also provides alternative means of access. The means of access may allow feedback of its appropriate use in the selection of function, especially when the user may have impaired sensation and proprioception of the hand or limb. The feedback may be visual, audible or haptic (i.e., vibration) and the EC controller can indicate the status of the user input via its display.

Equipment Specification to Meet the Control Needs of the Individual The choice of particular EC peripheral units will be determined by the user’s own requirements/functional goals and the facilities in the environment; for instance, whether a cordless or wired landline telephone is necessitated. The choice of EC controller is also determined by a range of factors; however, it is primarily influenced by the user’s own functional abilities. For instance, the ability to see items on the display screen, the proximity required to the user, the availability of a remote means of access or the requirement for audio voice prompts of the menu selections. The number and type of EC functions required will determine the controller capacity as well as the types of transmitted control signals. Many of the configuration options for the EC controller are chosen to suit the user, according to assessment aspects such as visual and cognitive abilities and switch access capability.

Operational Aspects and Management of Risk With EC Provision EC provision often forms part of the risk management for an individual living independently. Determining the effectiveness of the EC as well as the management of the additional

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risks it introduces forms a vital part of the equipment assessment and provision process. This continues into the operational use of the equipment, with its ongoing use and the need for adaptation for progressive conditions. Although EC may form part of the risk management strategy, EC provision is not intended as a substitute for necessary personal care or human intervention. The development of personal care robotics may well alter this balance and hence also the role for EC (Chapter 11). Key functional aspects of EC assessment therefore relate to the social environment of the individual, their pattern of life and support from others, whether formalised care or family and friends. Consideration of specific risk aspects is undertaken for particular EC functions, as follows. Summoning Assistance The need to summon assistance when needed is usually a priority goal of most cases of EC provision, whether that is help from someone within the same room (i.e., alert sound), from elsewhere in the same building (i.e., pager or nurse call) or externally (i.e., emergency lifeline or other telephone link). The priority and level of urgency of the call depend on the individual’s circumstances, which are required to be evaluated. The reliability of the means of call using ECS is contributed to by the reliability of the user in operating their means of access, the reliability of the ECS unit and the reliability of transmission of the alarm signal to the alarm device. The level of dependence or reliance on the ECS determines the speed or urgency of response required to any fault or malfunction with the equipment. This may be addressed by providing an alternative alarm call to ensure adequate reliability and availability through duplication of function. For instance, in cases where eye or head tracking may be the preferred and fastest method of access for most EC and computer-based functions, they are typically more prone to unavailability than a simple wired switch. Therefore a back-up alarm pager call via a single switch is often advisable. EC equipment is accepted as not being designed or suitable for the control of lifesustaining equipment such as ventilators, feeding machines or suctioning devices. Profiling Bed or Chair Control Through ECS The use of ECS to control movement of powered profiling beds and riser/recliner chairs introduces inherent risk from dealing with a moving piece of machinery. Despite the possibility of entrapment of limbs, children or animals, there are few such beds or chairs fitted with sensors to prevent or warn of this, or to provide incremental control of movement. Similarly, there is rarely any adjustable limitation of the extent of movement travel, for instance to avoid excessive bed tilt for a person with poor trunk control. For this reason, when controlled through EC, movement of a powered profiling bed or chair is time limited, typically to 3 s, to avoid excess movement at each selection. Further movement requires reselection from the EC menu. However, even with this precaution it is necessary to ensure that the user does not lose

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contact with their means of access to the ECS through relative motion, otherwise they are unable to make further movements independently or summon assistance if required. There are also technical aspects to EC of beds and chairs associated with the connection to the motor set. This is now only undertaken using specific interface leads or connection modules produced by the bed or chair manufacturer. In some instances a replacement handset is required to retain all movement functions. Appliance Control As with beds/chairs, control of other appliances can introduce risks, which require evaluation and explanation. Control of a heater or air conditioning unit can result in a detrimental extreme temperature if the user loses contact with their means of access or falls asleep. Door entry control through EC can greatly enhance independence of living and sense of autonomy over one’s own home. However, risks come from correctly identifying visitors before allowing entry and from the security of the electrically powered lock release. Door entry control is likely to be unsuitable for an individual with cognitive, memory or personality disorder, which might result in them allowing access inappropriately. Position and Orientation Mounting of EC Equipment The EC controller and some of the peripheral units are often carefully positioned for the user to be able to view satisfactorily using stands and mounting equipment. In particular, various mounting systems have been developed to allow EC and other EAT units to be mounted onto wheelchairs, in which many EC users spend much of their day. The modular systems allow a bespoke solution to meet the needs and usage pattern of the individual. As a consequence, an individualised risk assessment is required. This includes the user both understanding and accepting the responsibility for any limitations of use. Internet Access A key functional goal of providing access to computer technologies is likely to be access to the internet for web browsing, email, social media and applications. There are inherent risks to the individual from various sources (e.g., malware, viruses, inappropriate social contact, financial deception or extortions and viewing inappropriate material). Prior to provision of equipment to allow this, it is necessary to determine that the intended user comprehends and accepts the responsibility for these risks and any limitation of use arising. This is often achieved with a prescriber/ user agreement.    Following on from the assessment which will have identified the need and some of the steps to facilitate the solution, the specialist EC services will formulate a prescription identifying the most appropriate technology solution. This will then be actioned, with referrals and requests made to relevant organisations and services as needed prior to the technology being issued.

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Evidence Base for Effectiveness of EC Provision The level of evidence for the effectiveness of EC provision is considered low, largely due to the absence of high-quality studies of equivalence to randomised controlled trials or those with multicentre format. The majority of studies are of small sample size or individual case studies with insufficient diversity (Brandt et al., 2011). Hence well-designed outcomes research is recommended to inform clinical decision making in the provision of AT (Brandt et al., 2012). However, among the individual studies, the reported study outcomes concluded that EC provision did increase the independence of users, enabling some to live alone and some to socialise more. Also, that quality of life and psychosocial function, when measured, were shown to be high among those with EC provision (Brandt et al., 2011).

Qualitative Indicators Some studies have sought to evaluate the effectiveness of EC provision through qualitative measures, such as themed analysis of structured interviews (Verdonck et al., 2011, 2014; Squires et al., 2013). While sample sizes are very small, findings suggest that EC users perceive improvement in both anticipated and actual lived experiences with EC equipment. There is also noticeable evidence of effectiveness from the reporting undertaken by NHS services in the United Kingdom, where reviews of existing EC users are undertaken. This is in contrast to a service delivery model without routine clinical contact and review (Novak, 1998) where abandonment was apparent.

Summary In this chapter we have provided a brief history of ECS, and explained that the main reasons for their provision are improved autonomy and quality of life, supporting independence as well as enhancing well-being and psychological status of user and potentially their carer. We have provided the reader with an outline of components of an ECS and how the devices can be accessed. Over the years the technology has evolved significantly with mainstream devices increasingly offering EC functions. The advantage of this is that the technology is more accessible and it increases choices for those who need this type of support. However, the technology by itself does not provide independence for those with complex needs. Support and maintenance play a significant role to successful implementation of EC, in particular for those relying on these technologies for their activities of daily living. In such situations a multidisciplinary assessment is essential to ensure that their needs are met and appropriate support is in place. In the absence of employing a holistic approach to implement ECS, there is a significant risk of abandonment of technology which has its own consequences both financially and psychologically for the person with complex needs.

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References Andrich, R., Mathiassen, N., Hoogerwerf, E., Gelderblom, G.J., 2013. Service delivery systems for assistive technology in Europe: an AAATE/EASTIN position paper. Technology and Disability 25 (3), 127–146. Brandt, Å., Samuelsson, K., Töytäri, O., Salminen, A., 2011. Activity and participation, quality of life and user satisfaction outcomes of environmental control systems and smart home technology: a systematic review. Disability and Rehabilitation: Assistive Technology 6 (3), 189–206. Brandt, Å., Alwin, J., Anttila, H., Samuelsson, K., Salminen, A., 2012. Quality of evidence of assistive technology interventions for people with disability: an overview of systematic reviews. Technology and Disability 24 (1), 9–48. BSRM British Society for Rehabilitation Medicine, 1994. Working Party Report on Environmental Controls: Prescription for Independence. BSRM British Society for Rehabilitation Medicine, 2000. Working Party Report on Electronic Assistive Technology (EAT). Dahlberg, R., Blomquist, U.B., Richter, A., Lampel, A., 2014. The service delivery system for assistive technology in Sweden: current situation and trends. Technology and Disability 26 (4), 191–197. Desideri, L., Roentgen, U, Hoogerwerf, E., de Witte, L., 2013. Recommending assistive technology (AT) for children with multiple disabilities: A systematic review and qualitative synthesis of models and instruments for AT professionals. Technology & Disability 25 (1), p. 3–13. NHS England, 2013. Service Specification D01/S/c Complex Disability Equipment - Environmental Controls (All Ages) Redditch. NHS England. Available at: https://www.england.nhs.uk/wp-content/ uploads/2013/06/d01-com-dis-equ-env-con.pdf. ISO 9999, 2016. Assistive Products for Persons with Disability – Classification and Terminology. Judge, S., Robertson, Z., Hawley, M., Enderby, P., 2009. Speech-driven environmental control systems – a qualitative analysis of users’ perceptions. Disability and Rehabilitation: Assistive Technology 4 (3), 151–157. NHS Supply Chain, 2014. National Framework Agreement for Electronic Assistive Technology Products and Services. Contract Reference : 2014/S 054–089986. Available at: https://www.supplychain.nhs.uk/ product-news/contract-launch-briefs/contract-information/electronic-assistive-technology/. Novak, S.A., 1998. Environmental Control Systems – an audit of existing provision in three inner London districts. Clinical Rehabilitation 12 (1), 88–93. Preston, J., Edmans, J., 2016. Occupational Therapy and Neurological Conditions. Wiley & Sons, p. 69. Rigby, P., Ryan, S., Campbell, K., 2011. Electronic aids to daily living and quality of life for persons with tetraplegia. Disability and Rehabilitation: Assistive Technology 6 (3), 260–267. Squires, L.A., Rush, F., Hopkinson, A., Val, M., 2013. The physical and psychological impact of using a computer-based environmental control system: a case study. Disability and Rehabilitation: Assistive Technology 8 (5), 434–443. Verdonck, M., Chard, G., Nolan, M., 2011. Electronic aids to daily living: be able to do what you want. Disability and Rehabilitation: Assistive Technology 6 (3), 268–281. Verdonck, M., Steggles, E., Nolan, M., Chard, G., 2014. Experiences of using an Environmental Control System (ECS) for persons with high cervical spinal cord injury: the interplay between hassle and engagement. Disability and Rehabilitation: Assistive Technology 9 (1), 70–78. Vlaskamp, F., Soede, M., Gelderblom, G.J., 2012. History of assistive technology; 5000 Years of technology development for humans needs. Technology and Disability 24 (2), 179.

Further Reading International Standard for Organisation (ISO), 2016. Geneva. Available at: https://www.iso.org/standard/ 60547.html.

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Alternative and Augmentative Communication Tom Griffiths1,2, Steven Bloch2, Katie Price2, Michael Clarke2 1 COMM UNI CATI O N

AI D S ERVI CE EA S T O F E N G L A N D ( C A S E E ) , C A MB R I D G E U N I V E R S I T Y HO S PI TAL S NHS F O U N D AT I O N T R U S T, C A MB R I D G E , U N I T E D K I N G D O M; 2 DIVISION O F PS YCHO L O GY AND L A N G U A G E S C I E N C E S , U N I V E R S I T Y C O L L E G E L O N D O N (UCL), LONDON, UNITED KINGDOM

CHAPTER OUTLINE Introduction������������������������������������������������������������������������������������������������������������������������������������� 182 A History of AAC����������������������������������������������������������������������������������������������������������������������������� 182 Prevalence of Need������������������������������������������������������������������������������������������������������������������������� 186 Defining and Classifying AAC Systems����������������������������������������������������������������������������������������� 187 Components of an AAC System����������������������������������������������������������������������������������������������������� 189 Input Methods���������������������������������������������������������������������������������������������������������������������������� 189 Selection Sets and Language Processors����������������������������������������������������������������������������������� 190 Output Methods������������������������������������������������������������������������������������������������������������������������� 192 Assessment�������������������������������������������������������������������������������������������������������������������������������������� 193 Body Functions and Structure���������������������������������������������������������������������������������������������������� 194 Activity and Participation���������������������������������������������������������������������������������������������������������� 196 Environmental Factors��������������������������������������������������������������������������������������������������������������� 196 Personal Factors�������������������������������������������������������������������������������������������������������������������������� 197 Communicative Competence��������������������������������������������������������������������������������������������������������� 197 Linguistic Competence��������������������������������������������������������������������������������������������������������������� 198 Operational Competence����������������������������������������������������������������������������������������������������������� 198 Social Competence��������������������������������������������������������������������������������������������������������������������� 198 Strategic Competence���������������������������������������������������������������������������������������������������������������� 199 Communication Partners and Communicative Competence��������������������������������������������������� 199 Communicative Competence – Moving Forward��������������������������������������������������������������������� 199 Evidence-Based Practice in AAC����������������������������������������������������������������������������������������������������� 200 Patient Values and Preferences������������������������������������������������������������������������������������������������� 200 Clinical Experience���������������������������������������������������������������������������������������������������������������������� 201 Best Research Evidence�������������������������������������������������������������������������������������������������������������� 201 Practice-Based Evidence������������������������������������������������������������������������������������������������������������� 202 Handbook of Electronic Assistive Technology. https://doi.org/10.1016/B978-0-12-812487-1.00007-7 Copyright © 2019 Elsevier Ltd. All rights reserved.

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AAC Service Delivery in the United Kingdom������������������������������������������������������������������������������� 202 England��������������������������������������������������������������������������������������������������������������������������������������� 202 Scotland�������������������������������������������������������������������������������������������������������������������������������������� 203 Wales������������������������������������������������������������������������������������������������������������������������������������������� 204 Northern Ireland������������������������������������������������������������������������������������������������������������������������� 204 Conclusion��������������������������������������������������������������������������������������������������������������������������������������� 204 Nikhil’s Case Study (Paediatric)�������������������������������������������������������������������������������������������������� 204 Martin’s Case Study (Adult)������������������������������������������������������������������������������������������������������� 206 References��������������������������������������������������������������������������������������������������������������������������������������� 210

Introduction Augmentative and alternative communication (AAC) is a term used to describe a range of techniques, strategies and systems to support speech or writing where these are impaired. While its broadest definition includes intrinsic forms of nonspeech communication such as gesture and pointing, the term is most commonly used to refer to formalised systems of signs, letters or graphic symbols, which are explicitly introduced or taught (Clarke et al., 2016). Such systems might include printed materials such as letter boards, arrays of symbols or more technically complex systems such as dynamic screen communication aid devices and software. For clinicians working in the fields of AAC and electronic assistive technology, the selection and provision of a communication system for a particular client is a highly individualised process, requiring input from a range of professionals working together as a multidisciplinary team. This chapter will provide a brief history of technological developments, an overview of how AAC systems are commonly classified, discuss frameworks relevant to the assessment, selection and outcome measurement for AAC systems and describe the current model of service delivery in the United Kingdom.

A History of AAC AAC as a discrete field first began to emerge in the 1950s and 1960s, at a time when mainstream society was developing a greater awareness of the rights and needs of people with disabilities (Hourcade et al., 2004). As legislation in both the United States and the United Kingdom changed to promote the wider inclusion of people with cognitive and physical disabilities, so a focus on developing techniques, strategies and equipment to support those with little or no functional speech began to emerge. Legislation requiring all children with disabilities to be given access to education, the Education for All Handicapped Children Act (1978) in the United States and the Education Act (1981) in the United Kingdom, prompted the emergence of a clinical speciality focused on providing alternative means to access education and the curriculum.

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Early AAC assessment and provision operated on a candidacy model, in which it was believed that a group of prerequisite motor, cognitive, language and social skills must be present in an individual for the introduction of AAC to be considered. For example, before the advent of dynamic screen devices capable of displaying multiple pages of graphic symbols, AAC systems capable of voice output were generally considered only for individuals with good literacy skills. With the advent of portable dynamic screens and other similar technological advances and the increased focus on AAC as a specific field, this thinking has changed and today AAC is considered as a way to support individuals with a broader range of disabilities. Changes in disability legislation and awareness have also played a part in AAC being implemented for a broader range of people (Hourcade et al., 2004). In 2003, the National Joint Committee for the Communication Needs of Persons with Severe Disabilities, an American multiprofessional committee, proposed that the candidacy model and the determination of eligibility based on predetermined criteria ‘violate recommended practice principles by precluding consideration of individual needs’. Today, it is common practice that ‘eligibility for communication services and supports should be based on individual communication needs’, as suggested by the committee (Brady et al., 2016). The use of multifunctional devices has also meant that AAC systems can also support people with a range of functions, including communication, access to education, play and leisure activities (Griffiths and Price, 2011; Morris and Bryen, 2015). Increased research activity has also helped to change the perspective on whom AAC systems are provided for and the impact they have. For example, one concern was that the provision of an AAC system would slow or halt any progress that would be made with natural speech in children with developmental disabilities. This has been shown not to be the case: in fact a systematic review conducted in 2006 demonstrated that an increase in the production of speech was reported in 24 of 27 included cases (Millar et al., 2006). With reference to adults with aphasia, results from single case and small group design studies indicate that people with post-stroke aphasia show improvements when a high-technology AAC is used to enhance communication. Studies have involved people with different types of aphasia, varying degrees of severity and several types of AAC (Russo et al., 2017). While unaided forms of AAC such as sign language can trace their history back as far as the 16th and 17th centuries, and the use of writing for people with well-developed literacy but no functional speech also has a long history, formal systems of aided communication are a much more recent innovation. Low-tech communication boards (printed arrays of letters or phrases for selection by pointing with a finger or stylus) were first manufactured for use in the 1920s (Vanderheiden, 2002). High-tech AAC systems began to emerge in the 1960s, focusing initially on the adaptation of existing technologies for literate users. Beginning with comparatively simple adaptations such as a head pointer or a keyguard for a manual typewriter, the development of specific technologies for people with disabilities allowed access to AAC devices for an ever-increasing range of clients. An early example, the Patient Operated Selector Mechanism (POSSUM, 1960), was a typewriter controller that scanned through a set of symbols which could be selected by using a sip/puff switch – a type of switch that uses

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pneumatic control, allowing the user to inhale or ‘sip’ to move the scan forward and exhale or ‘puff’ to make a selection when the desired item was highlighted. Similar systems allowed the use of light pointers attached to a body part with reliable movement, which could be targeted at photosensitive cells to make selections (Vanderheiden, 2002). In the 1960s, 1970s and 1980s, several companies focusing on the manufacture of AAC devices began to appear, including Prentke Romich (1969), Toby Churchill Ltd (1973) and Dynavox (1982). Most early AAC systems focused on the use of traditional orthography and were designed to meet the needs of literate users. In the 1960s and 1970s, the use of graphic symbols was introduced to facilitate access to AAC for those with greater levels of intellectual disability. Beginning with the use of highly ideographic symbol systems such as Blissymbols, where a range of base symbols can be combined to produce new concepts and more complex language, the use of graphic symbols has expanded to include pictogram-based systems such as the Picture Communication Symbols and Widget Literacy Symbols. These symbol libraries tend towards presenting a more pictorial representation of an object or action (Fig. 7-1). It has been argued that, while perhaps less flexible than the use of Blissymbols, pictograms are more transparent and therefore easier for children and people with intellectual disabilities to learn. However, it has been proposed that existing pictograms still differ significantly from children’s representations of early emerging language concepts (Light and Drager, 2007) and that the learning needs could be further reduced by redesigning symbol sets. In recent years, several sets of open source symbols offered under Creative Commons licensing (such as ARASAAC symbols of the Mulberry symbol set) have appeared, along with culturally specific symbols such as those from the Tawasol symbol set. A large library of open source symbols can be found at www.opensymbols.org. Technological developments in the field of AAC have tended to follow the development and spread of personal computer (PC) technologies. In the 1980s and 1990s, PC devices became smaller, more powerful and more affordable, with these changes being reflected in the field of AAC. More recently, with the wide availability of tablet PC technology, AAC systems have become smaller, lighter and are now often based on commercially available technology. While there still exists some debate regarding the pros and cons of using mainstream technology as opposed to systems designed from the bottom up, specifically for AAC (Griffiths and Price, 2011; McNaughton et al., 2013), the field has generally embraced the move toward bespoke software running on mainstream or customised hardware. Changes and developments in access technology have also meant that high-tech AAC devices can now be controlled in a wide variety of different ways. In particular, the development of eye-gaze access technology, where the movement and rest of a user’s eyes are converted into cursor control, has allowed access to AAC systems for some users who previously may have had no physical means of interfacing with and controlling technology. As AAC grew and developed, several organisations emerged to promote awareness and understanding, and to support people using AAC, clinicians and researchers in the

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field. The largest of these is the International Society for Augmentative and Alternative Communication (ISAAC1), which was formed in Michigan, USA, in 1983 and is now based in Toronto, Canada. ISAAC has 15 member chapters in countries or regions around the world. The UK chapter was founded three years later in 1986 under the name ISAAC (UK). In 1991, the organisation changed its name to Communication Matters,2 which is the name it retains today. The importance of AAC has received international recognition, with communication being recognised in both the United Nations Universal Declaration of Human Rights and the UK Human Rights Act. In 2013, the World Health Organisation (WHO) launched an initiative entitled Global Cooperation on Assistive Technology. The first published outcome from this initiative is the Priority Assistive Products List (APL) – a list of 50 assistive products, selected on the basis of widespread need and impact on a person’s life and recommended as a priority for research, development and provision (WHO, 2016). The APL includes several AAC systems and methods (i.e., communication books/boards/cards, communication software and gesture to voice technology), as well as a number of computer access solutions that are regularly used in AAC (i.e., keyboard and mouse emulation software and screen readers).

Prevalence of Need Because of the varied and changing groups requiring AAC, as well as advances in technology and design making systems more accessible, precise figures on the prevalence of need are difficult to generate. A study commissioned by Communication Matters and carried out by researchers at Sheffield University and Barnsley Hospital used an epidemiological approach to produce prevalence estimates based on figures reported in the literature and consultation with experts working within the field. This study estimated that just over 0.5% of the total UK population (536 per 100,000) could benefit from some type of AAC system, with approximately 0.05% being potential beneficiaries from powered communication technologies (Creer et al., 2016). The research also indicated that nine conditions or diagnoses accounted for 97.5% of the need for AAC nationwide, with two groups (Alzheimer’s/dementia and Parkinson’s disease) representing almost half of the total need (Table 7-1). While there is evidence that the use of AAC systems can have a positive impact for a range of clinical conditions, studies comparing the efficacy of specific systems and techniques within specific client groups are comparatively rare due to the variability in client presentation within diagnostic groups. Researchers working with specific diagnostic client groups frequently refer to the need for individualised AAC systems. Clarke et al. (2016) describe the need for careful tailoring of assessments and systems to match the cognitive, vision and motor skills of children with cerebral palsy. In summarising the evidence for 1 www.isaac-online.org. 2 www.communicationmatters.org.uk.

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Table 7-1  The Percentage of People within Various Diagnostic Groups who could Potentially Benefit from AAC • Alzheimer’s/dementia (23.2%) • Parkinson’s disease (22.7%) • Autistic spectrum disorder (18.9%) • Learning disabilities (13.3%) • Stroke/cerebrovascular accident (9.9%) • Cerebral palsy (4.5%) • Head/brain injury (2.3%) • Profound and multiple learning disability (1.7%) • Motor neuron disease (1%) • Other (2.5%) Creer et al. (2016).

AAC to support children with autism, Wendt (2017) notes that ‘one single best [speech generating device] or AAC app for autism does not exist! Learners with autism present with varying needs and learning profiles and should receive individualised AAC solutions’. Similarly, a systematic review of the role of AAC for persons with developmental disabilities concluded that ‘it is difficult to form conclusions about the effect of augmented input on specific diagnostic populations’ because of the heterogeneity of these populations and the occurrence of comorbid conditions (Allen et al., 2017). Once again, the recommendations are that AAC systems should be chosen as a result of careful assessment and matching the skills of an individual to the specific features of a device.

Defining and Classifying AAC Systems AAC systems may support both receptive and expressive communication. The former refers to systems and strategies which support an individual’s understanding of language and the latter to supporting communicative output and the transmission of messages to a communication partner. Within the field of AAC, there exists some debate about the terminology used to describe the systems and devices used to support those with expressive communication needs. For the purposes of this chapter, the authors have chosen to use the terms unaided, low-tech and high-tech to categorise the different types of AAC discussed (Fig. 7-2). An unaided system is one that relies on a user’s body to convey messages, such as formalised sign languages, supported signing systems such as Makaton and Signed English or the use of natural gesture and facial expression. An unaided system requires no additional components, although will still require teaching and practice for a person to develop the skills needed to be an effective user. The other two categories require an additional transmission device or method. A low-tech system is usually a method such as a communication book or board, containing written text, graphic symbols, pictograms or photographs. A high-tech system is one that requires either a battery or mains power. This category includes dedicated communication aid devices making use of synthetic or digitally recorded voice output,

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AAC Recepve / Expressive Unaided •

Formalised sign languages • Supporve signing systems (Makaton and Signed English) • Natural gesture • Facial expression

High-Tech

Low-Tech • •

Communicaon Books Communicaon Boards

Commercially Available • Dictaon soware • Text-to-speech

Modified Mainstream • Specialist apps on mainstream tablets • Rugged cases

•

Bespoke Systems built as dedicated AAC devices

Representaon Method / Selecon Set Leers / Words

Phrases

Symbols / Photos

FIGURE 7-2  Classifications of augmentative and alternative communication systems.

specialist apps and both bespoke and commercially available software. For an independent and comprehensive database of low-tech and high-tech AAC devices and software, the reader is directed to the Speech Bubble website.3 It is worth noting that the terms high- and low-tech refer to the level of technological complexity and not necessarily the complexity of the language that each system can generate. It is also important to remember that most people who use AAC are likely to use multiple systems dependent on communicative function, conversation partners and context, often including unaided, low- and high-tech methods. The representation method used in an AAC system is also part of its classification, and refers to the way in which language concepts are represented for the user. As discussed previously, these might include written letters or words, graphic symbols or photographs. In the field of AAC, the array of items from which a user chooses to construct and generate messages is referred to as a selection set. It has been proposed that high-tech AAC systems can be further categorised into those which are commercially available, such as dictation or speech-to-text software, systems based on modified mainstream technologies, such as apps installed on tablet computers, and custom or bespoke systems built specifically for voice output (Cook et al., 2014). For example, an AAC user with good fine motor and cognitive skills may be able to make use of a commercially available tablet with a built-in voice synthesiser to support the generation of written words and phrases. However, where additional impairments of motor or cognitive functions exist, technology may need to be modified to meet the user’s needs. Similarly, where physical movement is severely impaired or absent, for example, in clients with motor neuron disease, the use of highly specialist systems such as eye-gaze control technology or switches may be necessary to facilitate the selection of desired items on a communication aid. 3 http://www.speechbubble.org.uk/.

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The classification of AAC systems is not a precise taxonomy and the foregoing categories should be seen as independent, with classification in one area not necessarily indicating or precluding classification in another. For example, a low-tech system such as a communication book can be used to support both receptive communication, through modelling of usage or aided language stimulation, and expressive language. Similarly, a modified mainstream system could provide a variety of selection sets, thus supporting both a symbol and fully literate user.

Components of an AAC System While the development of robust low-tech and unaided systems is a crucial part of AAC intervention, this section will focus primarily on the components of high-tech devices and systems. All high-tech AAC systems are characterised by three key, interrelated components: an input method, a selection set or language processor and an output method (Cook et al., 2014). These components are interrelated, in that decisions made about one may have an impact on decisions made about the others.

Input Methods Access to AAC devices can be either direct or indirect. Direct access involves the user pointing directly to the item they wish to select, using either a finger or stylus to access a touchscreen, or by using a pointing device. Indirect access involves the use of one or more switches and scanning through the available options within the selection set to make a choice. As a general rule, direct access methods provide the AAC system with continuous input such as the signals from a mouse controlling a cursor, and indirect systems provide discrete input, such as the press of a switch or keyboard key to produce a specific action. As such, while the selection of a direct or indirect access method will be specific to the individual, it is generally held that a direct access method is faster and more flexible, although it requires a greater level of motor control and coordination (Griffiths and Addison, 2017). The choice of a direct or indirect access method will be highly specific to the individual and will also impact on a number of other choices about the AAC system, including the layout and presentation of items within the selection set. Many hardware options are available to clinicians selecting an access system for a person using AAC (Chapter 5). In recent years, the advent of eye-gaze control technology has provided a nonphysical direct access method to some users whose physical disabilities might have previously precluded the use of direct access. While eye-gaze technology does not require a user to physically interface with an AAC device and therefore may be appealing for those with limited or impaired movement, the cognitive elements of such an access method are only beginning to be understood, particularly for younger users with congenital disabilities (Borgestig et al., 2016; Light and McNaughton, 2013; Myrden et al., 2014).

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Indirect access using one or more switches can be implemented using linear scanning (where the user moves through the available options one by one) or by any one of a number of ‘group’ scanning techniques, where groups of cells (for example, rows in a grid or blocks of cells defined according to their language function) are scanned initially, followed by the items within the selected group. While group scanning techniques are often faster and less physically demanding than linear scanning, particularly when a large selection set is required, these techniques place a greater cognitive demand on the user and require increased attention and concentration (Fager et al., 2011). These factors should therefore be carefully considered by clinicians looking to implement a scanning system for a client. Additionally, many varieties of switches exist to enable users with varying physical abilities to control a system (Chapter 5). An input method is also required to provide feedback to the user about the position of their onscreen cursor and to convey that a selection is in process or has been made. Again, these indicators can be customised for the specific needs of the user. Enlarged or high-contrast cursors can be used to provide a greater amount of visual feedback to those using a pointing device. Most AAC software will also provide an additional indicator of the cursor’s location by changing the colour of a cell, displaying a border around it or magnifying it to stand out from the rest of the array. Where dwell selection is being used, a visual indicator of progress toward a selection (such as a clock marker or the cell gradually changing colour) should be implemented to provide feedback to the user on what is being selected and allow the user to make adjustments if an accidental selection is about to be made. For many users, in particular those with visual impairment, the use of auditory feedback may be helpful as part of their input method. This might include the use of a sound to confirm that a selection has been made or, in some cases, the device providing dynamic feedback about whatever is under the cursor at that time. This ‘auditory prompting’ is particularly useful for users with a severe or profound visual impairment. In such cases, the content of the cell (or an abridged version of this) is read out to the user using a private auditory channel only they can hear. When the desired item is located, selecting it will prompt the device to transmit the complete/full message using the voice output function of the system. Irrespective of the access method selected for a user, clinicians should ensure the consistent positioning of the input method as much as possible, which will reduce the need for effortful control and promote automaticity of the movements needed to control the device, leading with practice to the development of automaticity and a reduction of the cognitive load associated with the access method (Griffiths and Addison, 2017).

Selection Sets and Language Processors The concept of a selection set has been previously alluded to as the array of onscreen options from which a user may choose to form their utterances using an AAC device. A selection set might contain individual letters, words, whole phrases, photos or graphic symbols representing language concepts. Choices around the content of a selection set will likely be dependent on a range of factors, including the person’s cognitive and linguistic

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abilities. However, the presentation and ordering of the items may be impacted upon by their access system – for example, a person who is using switches to access a text-based system may benefit from having their selection set organised according to the frequency the letters occurring in their language, rather than in traditional alphabetical order, to minimise the number of switch presses required to generate a word. Several different organisational approaches exist for the presentation of vocabulary on a high-tech AAC device. Vocabulary can be arranged semantically, with elements arranged according to a taxonomic categorisation, grammatically, with elements arranged by their use or their order in speech, alphabetically, with elements arranged according to their alphabetical order, or schematically, where elements are presented pragmatically related to specific contexts or activities. The choice of vocabulary organisation will be guided by careful assessment of an individual’s skills. Semantic organisation of vocabulary involves the grouping of language concepts, represented by words or graphic symbols, into taxonomic categories, which typically conform to an adult conceptualisation of how such concepts should be organised. It has been suggested that there is limited evidence available about whether such arrangements reflect how younger children organise language (Fallon et al., 2003) particularly abstract grammatical concepts. Grammatical organisation of vocabulary is an approach where the vocabulary items presented are arranged according to their function in spoken language. This would include ‘core vocabulary’ approaches, where high-frequency words, often pronouns and verbs, are foregrounded with the goal of increasing flexibility and aiding the AAC user in developing language (Drager et al., 2010). This approach would likely include an element of colour coding the different elements of language, as discussed further later. Alphabetical organisation of vocabulary involves the arrangement of vocabulary items in the alphabetical order of the user’s native language – acting in a similar way to a personalised dictionary for the user. Such an approach will require the user to have developed some basic literacy skills and an understanding of the alphabet and alphabetical order (Drager et al., 2010). Schematic organisation may include grid-based systems, where vocabulary needed for a specific context, such as a visit to a shop, or activity, such as vocabulary specific to a game, are presented to the user in a standard grid format. The grids may include whole utterances or individual words and sentence starters. This approach may also include the use of visual scene displays – photos or other graphic representations of events or contexts that are meaningful to the individual (e.g., a child’s classroom), with vocabulary concepts embedded within the scene (Light and McNaughton, 2013) using ‘hotspots’, which produce messages when activated. Research suggests that this approach may support younger children who, it has been suggested, will often categorise vocabulary items according to context-specific schema – for example, relating the words book or teacher to the context of the classroom. As the field of AAC has become more established, there now exist a number of commercially and freely available ‘premade’ vocabularies. While it is helpful for clinicians and caregivers

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to make use of such resources to save time and provide a starting point for the creation of a vocabulary, it is important to remember that all vocabularies will require customisation to make them specific to the needs of the individual. This is especially the case for vocabularies based on categorisation, where careful thought should be given to the contents of each category to ensure the user has quick access to words that are relevant and motivating to them. When considering the organisation of a selection set, particularly if this is to be presented in a grid format, the consistency of layout should be a primary consideration for clinicians and those designing systems. Particularly when working with dynamic display devices that move between pages, having language concepts ordered in a consistent way with consistent visual indicators, such as colouring the components of language according to a consistent ‘key’, will facilitate the user’s learning to operate the system more efficiently (Light and Drager, 2007). As with the positioning of an input method, consistency in the placement and identification of elements in a selection set will reduce the cognitive load and promote automaticity. Positioning the nonlanguage functions such as speak, clear and delete consistently throughout the system will further enhance the automaticity of a user’s interaction with the selection set. A selection set may also include one or more methods of rate enhancement. Since users of AAC systems typically communicate at an output rate significantly below spoken language at between 2 and 15 words per minute (wpm) compared (Beukelman and Mirenda, 1998) to rates of around 120–150 wpm for conversational speech, several techniques to increase the rate at which language is generated may be considered. These may include word-prediction or word-completion, based on frequency models that may adapt over time to the user’s way of speaking. Additionally, prestored phrases can significantly reduce the number of selections required to generate full sentences. Such phrases are particularly useful for social language such as greetings or frequently used questions or comments. Phrases can be prestored by the user themselves or by their support team. Similarly, abbreviation expansion may allow a user to type a small group of letters that are then automatically expanded by the software (e.g., inputting NP could be expanded into the phrase ‘no problem’). Sentence or phrase banking, where the user can retrieve a full prestored utterance by searching for keywords, can also enhance conversation rate. In recent years, advances in technology have meant that additional methods of rate enhancement are becoming available to AAC users. For example, the addition of locationaware software to many AAC users means that language specific to a context or location can be provided dynamically for faster retrieval by a user (Black et al., 2016). Similarly, new technologies such as facial recognition may offer additional opportunities by providing language tailored for a specific communication partner.

Output Methods Any AAC system will also need to include a method of output for the user to transmit messages or commands. A device may use synthesised or digital (recorded) speech to transmit a message to a conversation partner and may also produce text, either to support the voice output or for recording the language generated.

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High-tech devices may also include the facility to control other elements of a computer, or to transmit commands to another device. This might include transmitting commands to another computer system, a mobile phone or to an environmental control system as described in Chapter 6.

Assessment Clinicians may consider the introduction of AAC for individuals for whom written or spoken communication is difficult. Such difficulties may be present for a variety of reasons, occurring in the context of congenital disabilities such as cerebral palsy, progressive conditions such as Parkinson’s disease or motor neuron disease or acquired disability following a stroke or brain injury. It is often the case that individuals requiring AAC are described as having a complex condition, where more than one impairment or difficulty is present – for example, a person with a description of cerebral palsy may present with difficulties producing clear speech, as well as difficulties with gross and fine motor function that would preclude the use of a touchscreen or keyboard. As such, the introduction of an AAC system may need to include the selection and provision of an access system as well as consideration of an individual’s cognitive, sensory, social and linguistic abilities. An assessment for a potential AAC system is therefore considered to be a multidisciplinary process requiring input from a wide range of professionals. Equally, ongoing support and implementation of an AAC system requires the careful consideration and balancing of the views, skills and preferences of a range of stakeholders (Griffiths and Price, 2011), including the user themselves, family members and local and specialist clinical teams. Successful selection and implementation of an AAC system is a complex process, requiring consideration not only of the motor, sensory, learning, and communicative skills of the individual user but also the environment, support networks and communication partners with whom they will interact. The complex nature of many conditions producing communication impairment means that such impairments are unlikely to occur in isolation. As a result, it is reasonable to assume that assessment for an AAC system will require input from a range of professionals. While there currently exist no published guidelines on the professional roles required for an AAC assessment team, NHS England have recommended in their Service Specification document for Specialised AAC Services that a core assessment team may be made up of speech and language therapists, clinical scientists and technologists, occupational therapists and specialist education professionals. In addition, access to services such as physiotherapy and psychology are recommended; motor abilities, position for comfort and best function, and learning abilities and patterns should all be considered in selecting AAC system components. Where communication impairment is present as part of a complex condition, input from a medical doctor may also be sought to clarify the impact of an individual’s health condition on their likely use of a system, particularly if the condition is likely to change over time. There is no defined, agreed assessment process for selecting AAC systems for adults and children. In common with other electronic assistive technologies, dedicated National Institute for Health and Care Excellence guidelines for AAC do not exist at the time of

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Health Condion (disorder or disease)

Body Funcons & Structure

Acvity

Environmental Factors

Parcipaon

Personal Factors

FIGURE 7-3  International classification of functioning, disability and health framework.

writing. However, in recent years there has been an increasing interest in the use of the International Classification of Functioning, Disability and Health (ICF) (World Health Organisation, 2001a) and the subsequent adaptation for children and young people (World Health Organisation, 2001b) as frameworks for guiding the assessment process, supporting structured clinical decision-making and summarising results using a common language (Adolfsson et al., 2011; Fried-Oken and Granlund, 2012; Rowland et al., 2012). The model focuses on a person’s functioning, especially their participation, aiding in the identification of barriers and facilitators to AAC use. Since the ICF operates as a theoretical framework of related domains it is an ideal tool to reflect the potential impact of interrelated factors on AAC intervention (Fig. 7-3). The domains of the ICF are used in the following discussion of key points that should be considered during an assessment for AAC. Assessment for AAC systems will always be a highly individualised process and it would not be practical to describe every permutation of such an assessment in this chapter. The assessment of children with congenital disabilities will clearly differ vastly from the assessment of adults with acquired physical or neurological disabilities. However, the ICF framework has offered a framework of considerations when approaching assessment for an AAC system.

Body Functions and Structure Key to any AAC assessment is the understanding of the user’s physical abilities and the functional impact that any impairments may produce. It is reasonable to assume that these assessments will include as a starting point the assessment of speech and oromotor function. Assessment of speech will help highlight the need for AAC and may include assessment of speech clarity, articulation, consistency and rate. In addition to this, the various subsystems related to speech, including respiration, phonation, resonance and articulation, should also be assessed. A person who, for example, can produce speech with relative clarity only in short utterances due to respiratory difficulties may have a need for AAC to support the production of longer utterances. Similarly, optimising a person’s posture or seating may help to increase the utterance length and reduce fatigue, leading to improved use of a person’s natural speech. A person’s sensory functions must also be fully understood when considering design and provision of an AAC system. Principally, a person’s vision, ocular motor function and visual function should be assessed, since most AAC systems rely primarily on the use

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of visual stimuli such as signs, symbols and letters. Information about a person’s acuity (the clarity of their vision), particularly at near distance, should therefore inform clinical decision-making, particularly when considering the design and content of a selection set. Since the use of an AAC system requires the use of core functional vision skills such as fixation, directing gaze, disengaging and transferring gaze and visual scanning or searching of an array, assessment of a user’s functional gaze control abilities will also form an important part of the AAC assessment and selection process. Where the user’s vision is impaired to the level that they would not be expected to use it as a primary channel for learning and communication, the use of auditory scanning techniques may be considered. This is where vocabulary items are spoken aloud in order, by either a communication partner or automatically by a high-tech AAC device, and the chosen item is selected using a purposeful movement either via a physical indicator, a vocalisation or the activation of a switch (Clarke et al., 2016). Assessment of a person’s hearing is also an important part of the assessment for AAC. Where hearing is impaired, the user may require an AAC system that supports receptive as well as expressive language, either using manual signs or specialist software that can provide transcription of a communication partner’s utterances. Additionally, where hearing aids or cochlear implant systems are in place, clinicians will need to consider how these will impact on a user’s individual, tailored needs from an AAC system. As alluded to previously, the assessment of an individual’s functional physical abilities will form a key part of an AAC assessment. This will include taking into consideration a person’s level of mobility, which will guide the selection of hardware for a system. For example, a user who is independently mobile will likely require an AAC device which is easily portable. A user who spends the majority of their time in a wheelchair, supportive seating system or bed, on the other hand, will require an aid that can be mounted to maximise its use. A user’s posture should also be taken into account, since a person whose posture changes frequently will require an aid that can similarly be repositioned with minimal difficulty. Physical abilities directly related to accessing the device will also be an important consideration to identify a reliable point of control for an access method. Clinicians should also be mindful of how carrying out the physical movements needed to control a device may change over time, particularly where an individual fatigues quickly. The assessment of intellectual function, including appraisal of receptive language abilities, will further guide the selection of an AAC system for individuals. However, the challenges associated with robust and meaningful description of abilities in these areas for people with physical and/or sensory difficulties are significant. Standard, or commonly used, tests of intellectual/language ability often assume physical toy/object manipulation skills, and adequate vision to see small line drawings; this may frequently exclude use for many people needing AAC. As a consequence, understanding of intellectual and language abilities to guide, for example, vocabulary selection, language structure options and symbol system choice will need to comprise several approaches. In addition to structured and formal assessment measures, possibly adapted or modified to allow completion by persons with physical

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and/or visual difficulties, careful observation and interview information can reveal patterns of intellectual functioning.

Activity and Participation Participation in the context of the ICF model is described as ‘involvement in a life situation’ (WHO, 2001a,b). It has been proposed that the aim of the selection and provision of an AAC system is to increase an individual’s participation through involvement in activities within the home and work environments, leisure pursuits and the building and maintenance of relationships through social interaction. As a result of this, clinicians working to select and implement an AAC system must ensure that they are aware of the individual client’s goals and needs for a communication system. This will include understanding the range, type and frequency of activities undertaken and then ensuring that any AAC system is functional in the context of these activities. This may include ensuring that an AAC system is available to the user when it is required, either through the system being easily portable or through its being mounted to a chair, or ensuring that the relevant vocabulary is available quickly and easily within the selection set. The type and range of activities in which an individual participates can be determined through informal discussion, or through a range of structured measures which allow in individual to give their opinion on which activities they would like to increase their participation in.

Environmental Factors It is known that a range of environmental factors play significant roles in the adoption, implementation and use of an AAC system: from the physical environment and its adaptation, through personal, cultural and societal attitudes, to the support networks around an AAC user (Lund and Light, 2007). One key environmental factor is the attitude toward AAC of the potential user and their support network (i.e., family, carers, therapy and education support, etc.). Even before the process of selecting and customising an AAC system begins, clinicians should ensure that they have taken into account the extent to which an individual and their support network may be ready to discuss the need for such systems. Where an AAC system is being implemented to replace a person’s speech, for example, in changing or deteriorating conditions, such discussions may be highly emotive and it is important to be aware of the sensitivity required in discussing the introduction of an AAC system. The attitudes and confidence of those supporting an AAC user are also known to play a key role in the successful implementation of a communication system. For children starting out with AAC, it has been proposed that attitudes toward and confidence with technology in general may have an effect on potential outcomes for children using AAC systems (Clarke et al., 2016), with those less confident in the use of technology being less likely to actively engage with supporting the system. Conversely, increased internet literacy and the availability of information about AAC systems, coupled with many devices being based on mainstream hardware, means that many families and professionals will have an increased familiarity with the range of AAC systems available and may feel more

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confident in supporting them. Since all AAC systems involve some level of set-up, editing and customisation for the individual user, provision of training for family members and professionals is a vital component of the provision of an AAC system. Establishing appropriate support channels in the event that a system requires maintenance or repair is also an important component of ongoing provision. It has been noted that interactions involving AAC users differ significantly from conversation between two or more speaking partners in regard to their pacing, structure and content (Clarke and Kirton, 2003; Higginbotham and Caves, 2002). Since the use of any AAC system is likely to be markedly slower than spoken conversation, the attitude of the communication partner toward the system can play a significant role in how these interactions proceed. Communication partner training can therefore play a role in how those interacting with an AAC user respond and take part in an interaction. The provision of vocabulary to allow an AAC user to control the conversation or to provide a conversation partner with information about how best to facilitate the interaction can be helpful strategies that should be considered by clinicians.

Personal Factors Personal factors within the ICF framework are defined as being ‘characteristics of the individual that are not a direct result of disability’. These factors might include gender, race, age, other health conditions, fitness, lifestyle, coping styles and life experiences (WHO, 2001a,b). While the impact of personal factors on the use of AAC systems can be hard to measure, it has been noted that personal attitudes such as high levels of determination and persistence have a positive effect on the outcome of AAC provision (Lund and Light, 2007), as well as high expectations of the user and support team and the sociability and opportunities for social interaction of an individual.

Communicative Competence There is a second framework to guide provision of an appropriate AAC system. Using an AAC system is a complex process that relies on a number of different abilities or competencies. The application of a communicative competence approach to AAC is best attributed to Janice Light’s work (Light, 1989; Light and McNaughton, 2014). Light herself draws on the following definition of competence as the quality or state of being functionally adequate or of having sufficient knowledge, judgement or skill (Webster’s Third New International Dictionary of the English Language, 1966, p. 463). Several issues underpin this definition. In terms of functionality, competence is relative and context dependent. The functionality of an individual’s communication should be judged against real outcomes in real-life situations rather than, for example, abstract ability tests. Crucially, it is an interpersonal construct, dependent on the abilities of communication partners as well as of people who use AAC. Also, it is important to note that it is a dynamic process. Competency can vary over time and in different

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circumstances or settings. With reference to adequacy ‘Communicative competence suggests an adequate level of communication skills to function within the environment; it does not imply total mastery of the art of communication’ (Light, 1989). This leads us away from the expectation that people who use AAC must be perfect in terms of expression (e.g., by using complex grammatical formulations), or perfect in terms of speed (e.g., being able to generate words at a speech rate observed in non-AAC users). In other words, professionals should use benchmarks that are not just based on normal spoken communication. Sufficiency of knowledge, judgement and skill is what matters rather than total mastery. Light identifies four areas of competency that underpin performance in AAC system use: linguistic, operational, social and strategic. Each of these interdependent areas is a vital component of communicative competence in AAC use.

Linguistic Competence This refers to an adequate mastery of the linguistic code. For AAC users there are two components: being able to communicate using an AAC code (e.g., symbols) and being able to understand the native language(s) (e.g., spoken English). Light argues that functional communication without this level of competence is possible but severely limited. In bi- or multilingual environments the linguistic demands are clearly greater. It is important to note that some people using AAC may only have access to a limited vocabulary set and this in itself may limit their linguistic competence.

Operational Competence This refers to the technical skills required to operate a system. These are not just motor abilities such as competent switch operation but also sensory abilities (e.g., vision) and cognitive abilities (e.g., sequencing, planning, memory, etc.). The competent use of an AAC system will always involve some degree of operational ability such as turning a device on/ off, volume control, etc. There is a risk that judgements of operational ability can dominate the perception of competence, particularly during the assessment process. Competence in AAC system operation does not, in itself, ensure functional use (Kraat, 1984).

Social Competence This has its roots in pragmatic and speech act theory (Austin, 1962). It describes the ways in which people use language in their interactions with others. Hymes (1972) neatly summarises the social rules of communication as competence as to when to speak, when not, and as to what to talk about, with whom, when, where, in what manner (p. 277). This includes behaviours such as topic initiation, asking questions, accepting or refusing invites, etc. Social competence can have a significant impact on how people who use AAC are viewed (Light et al., 2003a,b).

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Strategic Competence This relates to the use of compensatory or adaptive strategies to facilitate communication within restrictions, e.g., the use of telegrammatic utterances to speed up turn taking (itself a possible restriction in operational competence).

Communication Partners and Communicative Competence As stated earlier, competence is an interpersonal construct that can vary across situations and across communication partners. In practical terms this means that AAC assessment and intervention should include significant others as well as the person who may wish to use an AAC system. More than a decade after Light’s seminal work, she coedited with Beukelman and Reichle a textbook entitled Communicative Competence for Individuals Who Use AAC (Light et al., 2003b), where she elaborated on communicative competence in AAC. Her model was extended with further consideration of psychosocial factors intrinsic to the person using AAC, such as motivation, attitude and confidence. One critique of her work (Teachman and Gibson, 2014) suggests that Light’s model lacks explicit consideration of communication partners or competencies at the group or dyad level. Such a call has been identified by others (Granlund et al., 1995; Kagan, 1998) and is reflected in more recent analytical work in which the actions of both the user of an AAC system and their communication partners are considered on equal terms. This is applicable to both children (Clarke et al., 2001, 2011, 2012) and adults (Bloch, 2011; Bloch and Clarke, 2013; Bloch and Wilkinson, 2013).

Communicative Competence – Moving Forward Teachman and Gibson’s (2014) review of communicative competence models in AAC provides a helpful summary of the different approaches to this area. In looking to the future they draw attention to communicative participation and access to reduce marginalisation. One note of warning is the constant evolution of technology, which, while clearly a strength in terms of interconnectivity and potential social access, may present challenges such as a constant need to engage with new AAC systems and software. In summary, models of communicative competence and their application to AAC have provided an invaluable framework to support the understanding of AAC use in real life. Their strength is that they attend to the person using an AAC system and what it is they can do to communicate rather than simply invoking an idealised standard of what communication must look like. The argument is that people who use AAC should be judged on the overall success of their communication not on how well they compare to nonAAC users. Such models have also incorporated communication partners although more work is required to fully appreciate the integration of communication participants in any communicative event. Finally, a communicative competence perspective places AAC use within a wider social context. This allows us to consider social level enablers and barriers as well as individual skills and abilities.

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Best Research Evidence

Clinical Exper se

Client / Pa ent Values

FIGURE 7-4  Evidence-based practice framework.

Evidence-Based Practice in AAC Like other health, education and social care sectors, an everyday requirement of practitioners in the AAC field is to enhance outcomes for the clients they serve, that is, to use best evidence in decision-making. Best evidence-based practice (EBP) is commonly considered to incorporate three key factors: (1) patient preferences/values, (2) clinical expertise, and (3) best research evidence (Sackett et al., 1996). Working within an evidence framework (Fig. 7-4) therefore involves the integration of current, robust, published evidence with clinical expertise, and with perspectives from a broad range of stakeholders, including the AAC user and their ‘team’. The integration of this information should lead to assessment and intervention decisions that are effective and efficient (Schlosser and Raghavendra, 2004).

Patient Values and Preferences Patient values may be defined in a number of ways but perhaps essentially concern ‘what a person or group of people consider important in life’ (Friedman et al., 2006). Thus individual values such as wishes or preferences emerge and operate within broader personal, environmental and cultural, religious or spiritual contexts. Decision-making will, it seems, not only need to incorporate the values of the person who may benefit from AAC support but potentially also their carers/significant others. Incorporating the views of people using AAC, their families, carers and support teams demands particular interpersonal and negotiating skills from the AAC team. These skills may need to be specifically discussed and taught to acknowledge all perspectives and bring them together in the provision of equipment, setting communication and therapy goals and appropriate outcome measurement. For example, how can practitioners be certain that they are identifying authentic values in people who have communication difficulties and who may also have other learning or sensory impairments? How might opposing perspectives between the individual client and their carers and support teams be recognised and engaged with, and what are the implications of this for clinical decision-making? Should suboptimal recommendations for AAC equipment be made for an individual because they fit the support network’s preferences? Might values change in time? How might practitioners’ own implicit assumptions influence the gathering and evaluation of clients’ views? That is, in seeking to gather views of others, practitioners are charged to

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identify and evaluate their own preconceptions in relation to the clinical case in hand. Linked to this, it seems, are the ways in which practitioners draw on their own and others’ clinical experience; a second component of EBP.

Clinical Experience Clinical experience may be described as an individual’s or team’s ‘proficiency and judgement’ (Sackett et al., 1996), based on the build-up of theoretical and clinical knowledge, patient engagement and reflection on past patient outcomes. As such, the importance of reflective practice is enshrined in best practice standards. Equally, practitioners’ continuing professional development (CPD) would seem a cornerstone of clinical proficiency and judgement. However, while the need for training is recognised (Enderby et al., 2013), training in AAC as part of professional qualification (e.g., for speech and language therapists) appears limited, and postqualification AAC-related CPD is patchy and often limited in focus. Often, CPD is related to operational aspects of technologies (Wallis et al., 2017) and not to wider issues of clinical assessment and implementation.

Best Research Evidence The third component of the EBP framework concerns research evidence. For clinicians, difficulties can exist in acquiring, identifying and then evaluating the quality of research evidence. Gaining access to published evidence can be difficult for some clinicians, and the numbers of clinicians specialising in AAC may decrease as focus falls on other areas of public spending, further reducing the ‘pool’ of expertise available. The identification and evaluation of evidence also presents challenges to clinicians in the field. A recent review of research published in the Augmentative and Alternative Communication Journal in the last 30 years identified a growth of research activity in four key areas: (1) intervention research; (2) descriptive studies; (3) experimental studies; and (4) instrument and measurement development (McNaughton and Light, 2015). Of the intervention studies, the vast majority (85%) focused exclusively on the person using AAC, although the authors note that a growing proportion of the other studies (15%) examine training and change in communication partners. This would seem encouraging given that the field of AAC is, by default, concerned with human interpersonal interaction, which is itself a collaborative enterprise between conversationalists albeit with varying communication resources at their command (Clarke, 2016). While a growing body of evidence is available, a universal issue for practitioners, patients and their families and their advocates concerns evaluating its value, that is, its trustworthiness (Smith, 2016). To tackle this, a number of guidelines for evaluating existing evidence have been made available (Hannes et al., 2010). However, the assumptions on which guidelines are based have been questioned by some researchers. For example, the traditional hierarchy of evidence positions randomised controlled trials (RCTs) as the gold standard for generating trustworthy evidence. However, as Gugiu notes, this can mean that poorly conceived and constructed RCTs can be rated more

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highly than well-developed and conducted studies that are not RCTs (Gugiu, 2015). In addition, other arguments suggest that group studies that show positive average group differences following intervention may not be of benefit to some particular individuals, and/or may not reflect variation in change over time (McDonald et al., 2017). Equally, the heterogeneous characteristics of individuals using AAC can challenge the requirement of RCTs that the randomly selected treatment group matches an alternative nontreatment group. It has been suggested that other robust methods such as experimental single case studies (e.g., Soto and Clarke, 2017) may be more suitable for evaluating the types of behavioural interventions used in the field of AAC, and such studies may be more easily integrated into everyday clinical practice (McDonald et al., 2017).

Practice-Based Evidence While the use of the best available research evidence available is an important part of clinical practice, it is perhaps equally important that the clinical practice in AAC be conducted, as far as possible, in a standardised and structured way to support consistency across services, and to contribute to developing understanding in the field. It is known (Pennington et al., 2007) that people involved in AAC research are not described in terms adequate to allow replication of studies, and the barriers to more standardised clinical practice are also widely acknowledged. For example, there are few standardised assessment tools or profiles specific to AAC, and so assessment reports are often based on observations and assessment batteries that may be specific to a single therapist or team, making collection of data from multiple centres challenging for researchers.

AAC Service Delivery in the United Kingdom Finally, it may be helpful to consider how AAC services are currently delivered in the United Kingdom. The delivery and funding of AAC services varies across the United Kingdom. This section provides a summary of the way in which services are organised in England and Wales, Scotland and the Republic of Ireland. Since provision models are subject change, the reader is advised to consult the website of Communication Matters4 for the latest information on service delivery and commissioning.

England In England, a key document in the development of AAC services was The Bercow Report: A Review of Services for Children and Young People (0–19) with Speech, Language and Communication Needs (2008). This report set out 40 recommendations for the development of services for children with speech, language and communication needs, 4 http://communicationmatters.org.uk.

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including the development of a dedicated Communication Champion to develop services across the country. The Office of the Communication Champion (OCC) published a report in 2011 making a detailed list of recommendations to the government. Regarding the development of AAC services, the OCC recommended that the NHS Commissioning Board procure regional or supraregional ‘hub’ centres to assess the needs of children and young people who can benefit from AAC and to provide them with appropriate communication aids and services, in partnership with locally commissioned AAC ‘spoke’ services (OCC, 2011). These recommendations were accepted in the government’s Special Educational Needs and Disability Green Paper of the same year, and the NHS Commissioning Board duly began the identification of specialist AAC centres in 2012, identifying existing services with established expertise for both children and adults requiring high-tech AAC systems. Today, this has led to the establishment of 15 specialised services across England and the establishment of a consistent referral criteria and timelines for assessment, provision of equipment, planned preventative maintenance, repair and review. These centres are supported with a centralised budget of around £15 million per year. Full details can be found in the service specification document5 but, in summary, specialised services cover all ages and are contracted for the assessment and provision of high-tech communication aid systems and devices. In addition to the device, the NHS England commissioning document specifies that services must also provide any equipment needed for the individual to access the device (e.g., switches, eye-gaze technology systems, etc.), as well as any mounting equipment needed to ensure that the AAC device and any access or control system is in a suitable and consistent position for the user to access. Specialised services also have a remit to provide training for the user and their support team, as well as offering more general training sessions for staff working within their geographical area. At a local or community level, AAC provision is managed by Clinical Commissioning Groups, in common with other health services. Full details on the role of local AAC services can be found in NHS England’s commissioning guidelines.6

Scotland In Scotland, a report entitled A Right to Speak: Supporting Individuals who use Augmentative and Alternative Communication (Scottish Government, 2012) made eight recommendations for the development of AAC service provision in Scotland. These recommendations included the setting up of a system of AAC Networks, including national, regional and local services. This work was supported by NHS Education for Scotland and funding was made available for a 3-year (2012–15) programme to raise awareness of AAC, to enhance the provision and support of AAC services and equipment and to build a base ensuring a sustainable future for good quality AAC services in Scotland. 5 http://bit.ly/2yAphtT. 6 http://bit.ly/2hZA2LU.

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Wales In 2011, the Welsh Assembly published a review of AAC provision entitled A review of Current Service Provision: Communication Aids (Welsh Government, 2011). This review estimated the population who might benefit from AAC provision and the number of people who might require high-tech communication aids, estimating this latter population at 1540 people across Wales. As a response to this, a hub service for the assessment and provision of high-tech AAC devices was set up, based within the All-Wales Electronic and Assistive Technology Service at Rookwood Hospital in Cardiff. The Welsh government invested approximately £1.3 million in the project over a 2-year period to fund equipment for assessment and provision, as well as existing and new staff roles within the centre.

Northern Ireland In Northern Ireland, the provision of AAC assessment and equipment is the responsibility of the five health and social care trusts. A central specialist centre is located at the Belfast Communication Advice Centre, which offers specialist assessment and an extensive loan bank for trial and short-term loan. Recommendations for funding equipment in the longer term are then made to the individual user’s health and social care trust.

Conclusion It is certainly true that the advent of AAC as a specific and discrete field of clinical practice and research is comparatively recent. Research evidence in the field is continually developing and recent changes in service structure within the United Kingdom should allow more standardisation in the way that services are delivered. In this chapter, frameworks for assessment, clinical practice, describing outcomes and gathering and applying evidence have been presented and it is hoped that these will prove useful to clinicians beginning work in the field. It is important to stress that the selection, implementation and support of an AAC system is always a highly individualised process, with many factors guiding clinicians involved. Above all, it is hoped that the multidisciplinary and multistakeholder nature of the selection, provision and support of AAC systems is made clear.

Nikhil’s Case Study (Paediatric) Background Nikhil is a young man with cerebral palsy affecting all four limbs, Gross Motor Function Classification System level V, Manual Ability Classification System for Children with Cerebral Palsy level IV, moderate learning difficulties and right-sided esotropic strabismus (squint). Nikhil was referred to a specialist AAC service by his local speech and language therapist at the age of 10. On referral, he was described as a keen communicator whose current channels included some vocalisations, a consistent yes/no and the use of facial expression. He had no previous experience with high-tech AAC systems or devices, but had been provided with a laptop and some educational software, which he accessed using two switches on a bespoke

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mount which was attached to the rear of the chair and required a significant amount of adjustment to swing into place, including the use of Allen keys. At referral, Nikhil’s local team wanted to consider options for AAC software, the possibility of using eye-gaze access technology and, if this were not possible, how his current head switches could be adapted or replaced for more efficient access. A request was also made for any eventual system to be mounted to his wheelchair to support access to AAC across a range of contexts.

Assessment and Outcome At an initial appointment the team discussed goals for AAC with Nikhil, his family and his local team. A number of motivating factors were identified, including his wish to talk with family and peers about his favourite sport. His local team were keen to focus on expanding his linguistic skills by allowing him to construct novel utterances using grammatical elements. It also transpired that Nikhil was keen to make use of his hands as an access method. He also reported to the team that he did not like the way the existing head switch set-up looked and functioned. His language was assessed using an adapted language assessment which was conducted through partner-assisted scanning (where the clinician pointed to each item in turn and Nikhil indicated when his choice was highlighted in this way) and it was determined that his language was at approximately a 4–5 year level. The outcome of the language assessment and observation of his use of some introductory AAC software during this initial session guided the team’s thinking regarding the vocabulary that would be required on an AAC device. It was agreed that he would benefit from symbol support and that he would benefit from exposure to a ‘core’ language approach which would allow the flexibility to build utterances from grammatical elements such as prepositions, verbs and categorised nouns. Of equal importance was the access method that Nikhil would use to make selections on the device and the hardware that would form the base of the system. Since his vision was described as being broadly within normal limits, it was agreed that a standard size tablet (13″ screen) would be most practical to take into account requests to mount the final system. The team also trialled a number of different access methods with Nikhil to ensure that the vocabulary could be organised and accessed in an efficient way. Eye-gaze technology was trialled, although this was rejected as issues with various cameras accurately tracking his eyes meant that it was not possible for Nikhil to control a system with enough accuracy to permit the amount of cells he would likely require on each page. Ensuring that Nikhil’s wish to try using his hands was respected, the team trialled direct access to a touchscreen with a variety of modifications such as delayed activation and the addition of a touchguard. However, the use of a touchscreen resulted in a high number of accidental activations and was noted to be tiring and frustrating for Nikhil, so it was discussed with him that perhaps an alternative access method should be identified. The team looked at the use of head switches and found that Nikhil’s head control was sufficient to control and use bilateral head switches, which allowed him a high level of control over the speed of his scanning. It was also identified that, with practice, Nikhil could make use of column/row scanning to further enhance his selection rate and could make use of an additional cancel function if he needed to restart the scan. With this in mind, the team constructed a smaller, more adjustable and discrete head switch array for Nikhil,

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which used switches with a smaller activation area to ensure that the switch operated consistently wherever it was pressed. The switch mounting system also incorporated easily adjustable points of articulation with handles to allow fine-tuning of the switch position by Nikhil’s support team and the function to easily swing away and store the switches out of the way behind the headrest when they were not in use. The use of column/row scanning also guided clinicians in the layout of the selection set, with vocabulary organised syntactically in columns – with pronouns, high-frequency verbs and articles/quantifiers grouped together to increase the consistency in building sentences.

Martin’s Case Study (Adult) Background Martin has motor neuron disease, and lives at home with his wife. He is a keen user of technology. Martin is using his speech, but is unintelligible to unfamiliar listeners. He has noninvasive ventilation set up, which he uses with a nasal mask 24 h a day. Martin was using a head mouse and an app on his Apple Mac computer to communicate. He has also set up a system to access sound files recorded by others to say prerecorded phrases to add to his range of vocabulary. Martin had an iPad to use with a switch to access an onscreen keyboard to communicate when not sitting at his computer; his wife had attached this switch onto the front of a book which had helped, but it was difficult for her to set this up in a position which he could use with the residual strength in his left-hand middle finger flexors. Martin was referred because his switch access was becoming unreliable and he was keen to investigate alternatives to this and also positioning the iPad for when he was in his wheelchair and away from his Mac. Martin was also finding that during group conversations he was getting left behind during conversations as it takes a long time to spell things out using the iPad.

Assessment Physical abilities: Martin has good head movement when his head is supported on the wheelchair headrest and his powered wheelchair is tilted back. He has no active movement in his right hand/arm or either lower limb. He has some flexion and extension in his left-hand fingers, with the strongest movement in his middle finger, which he uses to operate his switch. Sensory: Martin has no hearing or visual impairment. He is able to see numerous small tabs open on his Mac, and navigate in and out of programs and use the onscreen keyboard at its smallest setting. Cognition: Martin exhibited no evidence of cognitive impairment. Language and literacy: Martin is literate and has no language difficulties.

Martin’s Goals Martin was keen to look at alternative methods of access to access his iPad. He was also keen to continue to use the sound files he had set up on his Mac as well as accessing his environmental control functions, which he was primarily accessing through his Alexa device.

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Options Considered Martin was using X–Y scanning on his iPad prior to the assessment, which allows you to use a single switch to select a point using a scanning vertical bar and horizontal scanning bar to select an X–Y coordinate on the screen. Once you select the coordinate, the cell (letter) will activate (Fig. 7-5). Martin had set up a spec switch on a book to access his iPad himself (Fig. 7-6). Alternatives to his switch set-up were explored using switches that required little pressure to ensure consistent access with the least effort, and he was able to use the switch throughout the day without fatigue (Fig. 7-7).

FIGURE 7-5  XY scanning.

FIGURE 7-6  Switch set-up prior to the assessment using a spec switch.

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FIGURE 7-7  Martin using a micro light switch on a custom-made wedge to suit his hand position.

Although Martin was very pro-Mac, he was offered a trial of a Windows-based eyegaze system for communication following an assessment. There are currently no available options for using eye gaze with Apple Mac systems. A trial of an eye-gaze-based system was undertaken for 2 weeks, with a dwell select time set at 1.3 s. On review of this, Martin reported that he was getting on very well with the eye-gaze system and was keen to move forward with expanding its use into Windows control, email, instant messaging and web browsing. Martin had independently explored other functions on it, using the ‘message’ function to store phrases to instruct his smart home control device to perform several functions. He had also reduced the dwell select time to 0.7 s by the review visit.

Outcome Although initially reluctant, Martin has embraced the Windows eye-gaze device to allow him to communicate more quickly and effectively with his wife, family and friends in a range of locations. He is able to type (using a mix of prediction and normal spelling) around 13 wpm. The AAC device was mounted on his wheelchair to ensure a consistent position for the eye gaze to work, as well as providing portability (Fig. 7-8). A separate floor stand was set up to enable use when Martin is in bed. Martin has been able to set up the device to allow him to access the sound files he recorded previously on his Mac. Because he has a background in computing, he has adapted several grid sets himself to allow him to continue to do his programming and coding through a Chrome remote desktop to access his Mac. He has also added software to allow him to control his projector, Firestick, DVD player, Apple TV, iPod speaker, fan and blinds. He has also set up using the Windows control software a bespoke keyboard and a grid to enable him to use Spotify.

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FIGURE 7-8  Martin using his eye-gaze system to communicate and access his environment.

FIGURE 7-9  Laminated alphabet chart with blank cells to write important messages that Martin requires to access on a daily basis.

Martin used his iPad for a while; however, due to his physical deterioration he is no longer able to do so.

Low-Tech Alternatives were discussed in situations when using the eye gaze was not suitable, such as in the middle of the night or in the shower. A laminated alphabet chart (Fig. 7-9) was issued to be used with partner-assisted scanning. In Martin’s case the conversation partner points to each row and Martin indicates yes when they reach the row that contains the letter he wants. The conversation partner repeats the process in that row until they reach the letter he wants. The process is repeated until a word or a message is composed and Martin is understood. The alphabet chart can also be customised to add everyday phrases to further speed up communication when the request may be urgent.

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Light, J.C., Beukelman, D.R., Reichle, J., 2003b. Communicative Competence for Individuals Who Use AAC. Brookes Publishing Company, Baltimore, MD. Light, J., Drager, K., 2007. AAC technologies for young children with complex communication needs: state of the science and future research directions. Augmentative and Alternative Communication (Baltimore, Md.: 1985) 23 (3), 204–216. Light, J., McNaughton, D., 2013. Putting people first: Re-Thinking the role of technology in augmentative and alternative communication intervention. Augmentative and Alternative Communication 29 (4), 299–309. Light, J., McNaughton, D., 2014. Communicative competence for individuals who require augmentative and alternative communication: a new definition for a new era of communication? Augmentative and Alternative Communication 30 (1), 1–18. Lund, S.K., Light, J., 2007. Long-term outcomes for individuals who use augmentative and alternative communication: Part III – contributing factors. Augmentative and Alternative Communication 23 (4), 323–335. McDonald, S., Quinn, F., Vieira, R., O’Brien, N., White, M., Johnston, D.W., Sniehotta, F.F., 2017. The state of the art and future opportunities for using longitudinal n-of-1 methods in health behaviour research: a systematic literature overview. Health Psychology Review (November), 1–17 7199. McNaughton, D., Light, J., 2015. What we write about when we write about AAC: the past 30 Years of research and future directions. Augmentative and Alternative Communication 31 (4), 261–270. McNaughton, D., Light, J., Naughton, D.M.C., 2013. The iPad and mobile technology revolution: benefits and challenges for individuals who require augmentative and alternative communication. Augmentative and Alternative Communication 29 (2), 107–116. Millar, D.C., Light, J.C., Schlosser, R.W., 2006. The impact of augmentative and alternative communication intervention on the speech production disabilities: a research review. Journal of Speech, Language, and Hearing Research 49 (April), 248–264. Morris, J.T., Bryen, D.N., 2015. Use of mainstream wireless technology by adults who use augmentative and alternative communications. Journal on Technology and Persons with Disabilities 101–115. Myrden, A., Schudlo, L., Weyand, S., Zeyl, T., Chau, T., 2014. Trends in communicative access solutions for children with cerebral palsy. Journal of Child Neurology 29 (8), 1108–1118. Pennington, L., Marshall, J., Goldbart, J., 2007. Describing participants in AAC research and their communicative environments: guidelines for research and practice. Disability and Rehabilitation 29 (7), 521–535. Rowland, C., Fried-Oken, M., Steiner, S. a M., Lollar, D., Phelps, R., Simeonsson, R.J., Granlund, M., 2012. Developing the ICF-CY for AAC profile and code set for children who rely on AAC. Augmentative and Alternative Communication (Baltimore, Md.: 1985) 28 (1), 21–32. Russo, M.J., Prodan, V., Meda, N.N., Carcavallo, L., Muracioli, A., Sabe, L., et al., 2017. High-technology augmentative communication for adults with post-stroke aphasia: a systematic review. Expert Review of Medical Devices 14 (5), 355–370. Sackett, D.L., Rosenberg, W., Gray, M.C., Muir, J.A., Haynes, R.B., Richardson, W.S., 1996. Evidence based medicine: what it is and what it isn’t. British Medical Journal 312, 71. Schlosser, R.W., Raghavendra, P., 2004. Evidence-based practice in augmentative and alternative communication. AAC: Augmentative and Alternative Communication 20 (1), 1–21. Smith, M., 2016. Evidence for impact and impact of evidence. AAC: Augmentative and Alternative Communication 32 (4), 227–232. Available at: http://doi.org/10.1080/07434618.2016.1250283. Soto, G., Clarke, M.T., 2017. Effects of a conversation-based intervention on the linguistic skills of children with motor speech disorders who use augmentative and alternative communication. Journal of Speech Language and Hearing Research 60 (7), 1980.

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Teachman, G., Gibson, B.E., 2014. “Communicative competence” in the field of augmentative and alternative communication: a review and critique. International Journal of Language and Communication Disorders 49 (1), 1–14. Vanderheiden, G.C., 2002. A journey through early augmentative communication and computer access. Journal of Rehabilitation Research and Development 39 (6), 39–53. Wallis, S., Bloch, S., Clarke, M., 2017. Augmentative and alternative communication (AAC) training provision for professionals in England. Journal of Enabling Technologies 11 (3), 101–112. Wendt, O., 2017. AAC in autism: challenges and practices. In: Deliberato, D., de Paula Nunes, D.R., de Jesus Goncalves, M. (Eds.), Ways towards Augmentative and Alternative Communication [Trilhando Juntos a Communicação Alternativa], first ed. Brazilian Association for Special Education Research (ABPEE), Marília, Brazil, pp. 47–62. World Health Organisation, 2001a. International Classification of Functioning, Disability and Health (ICF). Geneva. World Health Organisation, 2001b. International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY). Geneva. WHO. (2016). Priority assistive products list. Geneva, Switzerland. Available at: http://www.who.int/phi/ implementation/assistive_technology/low_res_english.pdf.

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Assisted Living Jeremy Linskell1, Guy Dewsbury2 1 NHS

TAYS I DE, DUNDEE, S C O T L A N D ; 2 I N D E P E N D E N T R E S E A R C H C O N S U LTA N T, PETERBOROUGH, UNITED KINGDOM

CHAPTER OUTLINE Definition of Assisted Living���������������������������������������������������������������������������������������������������������� 216 Smart Homes����������������������������������������������������������������������������������������������������������������������������������� 217 The Technology������������������������������������������������������������������������������������������������������������������������������� 218 ISO OSI Model of Data Transmission����������������������������������������������������������������������������������������� 219 KNX��������������������������������������������������������������������������������������������������������������������������������������������� 219 LonWorks������������������������������������������������������������������������������������������������������������������������������������ 221 BACnet���������������������������������������������������������������������������������������������������������������������������������������� 221 Powerline Technologies������������������������������������������������������������������������������������������������������������� 222 X10���������������������������������������������������������������������������������������������������������������������������������������������� 222 CEBus������������������������������������������������������������������������������������������������������������������������������������������� 222 HomePlug����������������������������������������������������������������������������������������������������������������������������������� 223 Radio Frequency������������������������������������������������������������������������������������������������������������������������� 223 Z-Wave���������������������������������������������������������������������������������������������������������������������������������������� 223 Zigbee����������������������������������������������������������������������������������������������������������������������������������������� 224 EnOcean�������������������������������������������������������������������������������������������������������������������������������������� 224 Bluetooth������������������������������������������������������������������������������������������������������������������������������������ 224 Thread����������������������������������������������������������������������������������������������������������������������������������������� 225 Internet Protocol������������������������������������������������������������������������������������������������������������������������ 225 OSGi��������������������������������������������������������������������������������������������������������������������������������������������� 225 Smart Homes in the United Kingdom������������������������������������������������������������������������������������������� 226 INTEGER�������������������������������������������������������������������������������������������������������������������������������������� 226 The AID House���������������������������������������������������������������������������������������������������������������������������� 226 The York Smart Flat�������������������������������������������������������������������������������������������������������������������� 227 Wigton Smart Home������������������������������������������������������������������������������������������������������������������ 227 CUSTODIAN��������������������������������������������������������������������������������������������������������������������������������� 228 Cambus Smart Cottage�������������������������������������������������������������������������������������������������������������� 230 Bath Institute of Medical Engineering�������������������������������������������������������������������������������������� 231 John Grooms Housing Association�������������������������������������������������������������������������������������������� 232 The Cedar Foundation��������������������������������������������������������������������������������������������������������������� 233 Hereward College����������������������������������������������������������������������������������������������������������������������� 234 Manchester Methodist Housing Association���������������������������������������������������������������������������� 234 Millennium Homes Project��������������������������������������������������������������������������������������������������������� 234 iCue��������������������������������������������������������������������������������������������������������������������������������������������� 235 Handbook of Electronic Assistive Technology. https://doi.org/10.1016/B978-0-12-812487-1.00008-9 Copyright © 2019 Elsevier Ltd. All rights reserved.

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Automation������������������������������������������������������������������������������������������������������������������������������������� 236 Flexibility in Control Layout������������������������������������������������������������������������������������������������������� 237 Adaptability of Design��������������������������������������������������������������������������������������������������������������� 237 Selectivity������������������������������������������������������������������������������������������������������������������������������������ 238 Safety Monitoring��������������������������������������������������������������������������������������������������������������������������� 239 Active Support of Lifestyle������������������������������������������������������������������������������������������������������������� 241 Lifestyle Monitoring����������������������������������������������������������������������������������������������������������������������� 242 Carer Support���������������������������������������������������������������������������������������������������������������������������������� 242 The Use of Telecare and Telehealth in Assisted Living����������������������������������������������������������������� 244 Telecare��������������������������������������������������������������������������������������������������������������������������������������� 244 Telehealth����������������������������������������������������������������������������������������������������������������������������������� 246 Telehealth and Telecare in Europe�������������������������������������������������������������������������������������������� 248 The Internet of Health�������������������������������������������������������������������������������������������������������������������� 250 Concluding Remarks����������������������������������������������������������������������������������������������������������������������� 251 References��������������������������������������������������������������������������������������������������������������������������������������� 254

Definition of Assisted Living It is possible to define assisted living in terms of the advanced technologies that are able to fulfil such roles. There is plenty of precedent for such a definition. The European Union, for example, has defined and focused these ideas strategically within the FP7 Programme1 and under appellation ambient assisted living (AAL): The roots of AAL are in traditional Assistive Technologies for people with disabilities, Design for All approaches to accessibility, usability and ultimately acceptability of interactive technologies as well as in the emerging computer paradigm of Ambient Intelligence, which offers new possibility of providing intelligent, unobtrusive and ubiquitous forms of assistance to older people and to citizens in general’ (Pieper et al., 2011). This definition puts their vision of AAL firmly in the third generation of technologies (Doughty et al., 1996) and in the fourth and fifth levels of Aldrich’s hierarchy of classes of smart homes (Aldrich, 2003). This may be an achievable goal, with many researchers preparing the way for these developments (Blackman et al., 2015; Calvaresi et al., 2016; Haux et al., 2016). Yet it is in this context that a technological perspective for assisted living should be considered, and as will be illustrated within the chapter, the potential to create appropriate technological solutions already exists. Among the challenges facing smart homes, telehealth and telecare, though, are the lack of evidence-based and agreed methodologies. Some of the reasons for this and some of the implications will be discussed. 1 https://ec.europa.eu/research/fp7/index_en.cfm.

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There are other widely used meanings of assisted living, which require attention. Assisted living has been used in the United States for a number of years: ‘most definitions include 24-hour supervision, housekeeping, meal preparation, and assistance with activities of daily living’ (Wright, 2004). This concept has evolved slightly differently in the United Kingdom as independent living in special complexes with some level of support, with the expectation that it will include an alarm system (Garwood, 2015). The related terms housing with care and extra care housing, which can be used interchangeably, extend those concepts to include 24-hour support and the provision of meaningful social activities, and now place a much larger emphasis on the provision of services to adults with disabilities. A key aspect is that it is a housing model with social care treated as a separate legal entity and this separation plays an important role in the personalisation agenda, allowing people to make decisions about how they wish to live. Assistive technology (AT) is expected to play a ‘tailored role’ but no guidance is offered as to what this might comprise (Garwood, 2015). Clarification of these and other definitions is important, as a lack of common understanding has dogged this field from the outset. This general problem was highlighted recently by Greenhalgh et al. (2017) who examined different stakeholders’ understanding of telehealth and telecare technologies. It concluded that there were four conflicting discourses in operation, differing assumptions and a lack of a coherent organising vision, which, they argued, have hampered successful implementation.

Smart Homes The descriptions of the early work on smart homes as AT are specifically from an EU-funded perspective, because it was in Europe that the first work on applying advanced technologies to support complex disability in the community was investigated. Much of this work was highly empirical on short-term funding, so sometimes lacked scientific rigour, which also led to limited publication. Hence much of the information is anecdotal, but is still worthy of reporting, as it provides the backdrop and context to later developments. Synthesising a definition of a smart home from a few of the vast number of publications on the subject (Demiris and Hensel, 2008; Chan et al., 2008; Lui et al., 2016), it can be confidently surmised that a smart home is a living space with infrastructure that includes a network of devices, which communicate with each other and potentially with the external world. The emphasis here is on the continuous communication between the devices and their ability to be programmed to interact with each other, either with or without user interaction. This contrasts with current telecare and telehealth systems, which, from a communication standpoint, are simple devices. They are in general terms standalone and act in a stimulus-response manner, requiring a response from an external actor. This chapter contends that only technologies that provide flexible, two-way communication, facilitate the use of key status information to inform care providers and simultaneously provide local, interactive support for the user can provide truly personalised care. Such personalised approaches reasonably fall within the potential remit of professionals working in the field of electronic assistive technology (EAT). However, the authors

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will argue that the informed, methodical approaches to specialist EAT provision, covered elsewhere in the book, do not currently include all the elements required to achieve successful outcomes.

The Technology It was in the 1990s when the possibilities associated with using technology to enhance independent living were dawning, and home automation was beginning to evolve from a market concept to reality. The commercial potential for home automation had already been demonstrated much earlier by the success of the simple, low-cost powerline-based X10 system (see Powerline Technologies), but the weaknesses and limitations inherent in this system made it unsuitable for consideration in such safety-critical situations. It was the emergence of offthe-shelf, sophisticated, home automation technology – the bus-based home automation systems – that offered the necessary levels of sophistication and robustness to potentially support complex needs. Once this had been realised and demonstrated, in principle by the BESTA project in Norway between 1993 and 1994 (Bjornby, 2000), various groups began to explore the possibilities that smart home systems offered for independent living. These explorations will be reported later in the chapter, but first we will summarise the technological developments, focusing heavily on the bus-based systems that kick-started the field, and which still represent the most developed body of knowledge on the subject today. The American Association of House Builders coined the phrase ‘smart home’ in 1984 and the concept of the smart home as it is generally understood began to materialise shortly after this. It was part of the continuous evolution of the field bus technologies developed for process control, which in turn had evolved from the logic-based process control technology originally developed in the 1970s. The continuing miniaturisation and related increase in complexity, coupled with decreasing cost of microelectronics, offered new possibilities in process control. It made it possible to incorporate microprocessors within local devices rather than relying on centralised computer control, thereby making systems more responsive and resilient. This led to a proliferation of field bus systems, first in industrial process control, then in areas such as building management systems and home automation. An early implementation of localised process control, using integrated circuit technology, was the TDC2000 system developed by Honeywell in 1975, although this wasn’t truly distributed intelligence. In 1979 Modicon, renamed Schneider Electric, introduced Modbus, which was a serial bus allowing a master to control up to 247 addressable slaves. This was followed by a proliferation of field bus systems with true distributed intelligence. Bitbus was developed by Intel and in 1983 they created the Bitbus controller; Bosch introduced CAN in 1982, and released the protocol in 1987, followed closely by the first controller chips from Intel and Philips, with the 1988 BMW 8 Series being the first production car to feature a CAN-based system; Process-Data developed P-Net in Denmark in 1983 with the first product launched in 1984; and in 1986 the German Department of Education and Research initiated development of Profibus, which was formerly launched in 1989.

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A field bus system is a linked network of devices, sensors and actuators, all with imbedded intelligence. ‘Bus’ refers to the cable used to connect the devices within the network. The terms ‘sensors’ and ‘actuators’ refer to device types but can also be considered generically to refer to system ‘inputs’ and ‘outputs’, respectively. The local intelligence originates from a local microprocessor and a unique physical address for each device, making it a node within the network, and the fact that all the devices communicate more or less as equals as they share information continuously over the network. This approach allows environments to be monitored intensively and real-time responses to complex situations to be made, and importantly with a high level of redundancy and consequent safety. The technology for intelligent building control systems clearly had potential for use in a domestic environment, and so developments in home automation followed, with a strong focus on the high-end market. Before reviewing the development of smart home systems it is helpful to have a contextual reference for defining the operation of such networked systems. This is provided by the Open Systems Interconnection (OSI) reference model (ISO standard 7498), which provides a design template for data communication standards.

ISO OSI Model of Data Transmission For complex networks to be understood a standard way of describing how they communicate is required. The OSI model provides a hierarchic model of system communications. It consists of seven layers, with standards defined for each layer covering areas such as physical characteristics, the network protocol and interaction with the outside world. This allows divergent systems to communicate freely within a layer and define ways of communicating across layers. Not all systems need to utilise all the layers. The model will be referred to when describing the various systems. Standardisation is an extremely important matter and has been a central issue within the evolution of all systems. The ability to offer compatibility and continuity is critical to creating a viable market for an ecosystem and in facilitating and ensuring connectivity with the wider world.

KNX There were three primary competitor technologies within the European home automation market: BatiBus, European Home System (EHS) and European Installation Bus (EIB). BatiBus was developed by Merkin Gerin in France and BatiBus Club International was formed in 1989. EHS was developed by Philips, Thomson and AEG out of a Europeanfunded Esprit II project and the European Home System Association was formed in 1990. The EIB was developed by a German consortium consisting of Berker, Gira, Jung, Merten and Siemens AG, and the European Installation Bus Association was also formed in 1990. Over time it became apparent that the existence of three major competing technologies was hampering rather than fostering commercial development within Europe. It was recognised by the three competitor technologies that they would need to work together to prevent technologies from outside Europe dominating the European market. This led to a lengthy convergence process from 1996 to 2002, the outcome of this being the formation

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of the KNX Association in 1999 and the publishing of the KNX Open Specification in 2001, the first device being manufactured in 2002. KNX, also known as Konnex, was approved as a European Standard (EN50090) and International Standard (ISO/IEC 14543) for building automation systems. A KNX network utilises a twisted pair to send data, as a conditioned signal superimposed on the supply voltage, to all the devices in the system via the characteristic green cable. The two wires are press fitted into a bus terminal, which can accommodate up to three cable connections and is the standard component for connecting KNX devices to the network. The KNX system may be freely branched and the only restriction in topology is that it cannot form a loop at any point, although branching does reduce the maximum length of any line, which has a nominal maximum length of 1 km. The system implements five levels of the OSI model and passes all values as bit and byte values within the bus telegrams without units. The basic unit of a KNX installation is a line, which along with its conditioning power supply can accommodate up to 64 devices, although repeaters can be added to allow up to three further sections each containing 64 devices to be added. The conditioning unit with the power supply is known as a choke. Further lines can be added to the system either to add more devices or to split the topology into sensible geographical segments for system management. Up to 15 lines can operate within one area, each line requiring a line coupler and its own conditioned power supply. Up to 15 areas can be combined on a backbone, each area requiring an area coupler and its own conditioned power supply. In general, line and area coupling is performed by the same device, reparameterised. The system transmission rate is 9600 bps and the green cable can be laid alongside mains electrical wiring, easing installation. Devices that translate between KNX and other systems facilitating intersystem communication are known as gateways. There are gateways available for the vast majority of significant communication systems. All certified devices carrying the KNX mark are guaranteed to be fully compatible with the system. The system is programmed using engineering tool software (ETS), a single, standard program for design, programming and diagnostics. Within ETS each device is assigned a physical address that consists of a unique three part number defining the area, line and device number. Depending on the application module to be used, there may be a large number of programs available, offering a widely varying range of parameters. These parameters, called objects, are the functions available, and interaction between devices is achieved by linking objects within logical addresses called groups. In this way a particular function may be added to a number of groups and used in many different ways simultaneously within a system. When programming the physical address into a bus controller unit, physical presence is required as a programming button has to be pressed on the device, but all further programming can be performed without direct access to the device. The system can be programmed locally via a USB interface or wirelessly or remotely via an Internet Protocol (IP) gateway. KNX was designed specifically as a system for building control, so was never intended to directly transmit and manage high bandwidth information. It provides transmission speeds suitable for such requirements, is easy to install alongside mains cabling and is very amenable

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to changes in topology once installed. It developed from a focus on building automation associated with regulatory requirements within Europe for management of services such as lighting and blind control, and so concentrates on obtaining a highly consistent standard of operation and interoperability in that sphere. The American home automation market historically had a primary focus on home entertainment and communication, and has a clear split between very low cost and high-end implementation, so has evolved slightly differently.

LonWorks LonWorks is a sophisticated field bus system that has many applications, including home automation and such diverse implementations as high-speed trains. It was created by the Echelon Corporation in 1988 from a vision to make sophisticated control systems available to all. Lon is an acronym for local operating network and the system has many of the properties of a LAN, and can be considered an intelligent control network. The system is based around a LonWorks device called a node that includes a Neuron chip manufactured under licence, and a transceiver with a range of transceiver types being available for different media. Communication between nodes is achieved using the LonTalk protocol, the protocol being held as firmware on the chip, which can itself also execute applications and includes 11 input/output pins. The Neuron chip remains the primary method of implementation, but the protocol has been available for general-purpose processors since 1999. The system can communicate over a large range of speeds up to the Mbits/s range, but the most common data rate is 78 kbits/s, which is used by the free topology twisted pair transceiver. A segment refers to the longest piece of uninterrupted wire and a segment can contain up to 64 nodes. The network can be split into many segments, each operating over its own medium at its own speed, making it a very powerful and adaptable system, which can be achieved because a LonWorks router can be fitted with any two transceivers. The unique 48-bit Neuron ID is also a three part address consisting of logical domain, subnet and node. The most important communication object of the LonTalk protocol is the network variable, which is the data item that a device expects to get or make available on a network. LonWorks implements the full functionality of the OSI model and a variable may be an environmental variable such as a temperature or a switch status. Interoperability is achieved by defining standard network variable types, which is achieved under the auspices of the LonMark Organisation. LonMark interoperability was introduced in 1994 and LonMark International, a nonprofit unincorporated organisation, was created in 2003. It has been adopted as the basis for a number of standards and in 2005 it was adopted as EN 14908 (European building automation standard).

BACnet BACnet is a protocol that was developed by the American Society of Heating, Refrigeration and Air-Conditioning Engineers (ASHRAE), beginning in 1987 and being adopted as a standard as ASHRAE/ANSI Standard 135 in 1995 and in 2003. The BACnet protocol defines a number of data link/physical layers, including ARCNET, Ethernet, BACnet/IP,

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BACnet/IPv6, Master-Slave/Token-Passing over RS-485, ZigBee and LonTalk. There is no common configuration tool and the majority of those available are not open source. It was designed primarily for large buildings and communication between buildings. The scale and nature of BACnet mean that it is not directly relevant to the smart home market in the context of this chapter. Twisted pair networks have been the focus for much of the development of intelligent control systems, as they provide the performance, robustness and redundancy required. However, there are a number of other transport media available that also need to be considered. Most of the systems just described have developed protocols for a number of these media, including powerline, radio frequency, fibre optic and IP.

Powerline Technologies The use of the mains electrical network to transmit data by superimposing low-energy information has been used since the very early days of the mains electrical system. Initially, it was used primarily to transmit information between power stations and substations to assist in demand and fault management, although there are examples of consumer devices such as baby monitors dating back to the 1940s. The clear advantage of powerline systems, especially in the domestic market, is that the infrastructure is already in place. Many attempts have been made to address the limitations associated with this method, such as interference, speed and security (Erbes, 2008).

X10 The X10 system was the first general-purpose home automation system and remains popular today as a low-cost option. Launched in the United States in 1978, it was designed to send control signals over the mains wiring, sending relatively simple unidirectional commands via a 16-channel command console to a lamp module and appliance module, which were soon joined by a timer module.2 The system response using this method is slow, and commands sent simultaneously can interfere leading to lost commands. The company has been responsible for some interesting innovations over the years and the system has evolved, including incorporating bidirectionality, but it remains a low-cost and simple system.

CEBus CEBus is a standard intended purely for the US market. It was intended primarily to increase the range of commands available for powerline-based systems, although it is an open system applicable to many media, and was an attempt to open up the high-end market to powerline systems. The protocol is available on a chip produced by Intellon Corporation in the United States and Domosys Corporation in Canada. It uses four layers of the OSI model and includes commands including feature and functionality discovery and enumeration. 2 https://www.hometoys.com/content.php?url=/htinews/oct99/articles/rye/rye.htm.

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HomePlug There are a large number of significant challenges associated with attempting to transmit data over lines carrying mains voltage, among which are security and interference. In 2000 the HomePlug Powerline Alliance was formed to establish standards for the use of powerline technologies for home networks. It was created specifically to deal with the problem of sensitivity to electrical noise on power lines, utilising very high transmission speeds, and the first standard HomePlug 1.0 was launched in 2001, followed by HomePlug AV for audio/ video in 2005. In 2010 HomePlug Green PHY was created specifically for the smart metering and energy markets and was adopted by a large group of automobile manufacturers as a connectivity standard for plug-in electric vehicles. This last standard is being promoted as an effective way of networking smart appliances. In 2010 the IEEE 1901 standard for highspeed communication devices via electric power lines, also called broadband over power lines, was ratified. The standard includes the Intersystem Protocol, which prevents interference between systems operating in close proximity. Although HomePlug devices can be of great benefit to users of buildings in relation to providing a cheap and simple method of transmitting networking and audio/video data to inaccessible building areas, the appliance management facilities are seen as primarily of benefit to service providers and do not strictly fall within the domain of smart homes as defined and described in this chapter. Other organisations promoting this area include Universal Power Line Association and HD-PLC.

Radio Frequency Wireless data communication using the radio frequency range is common place in today’s society. It is generally expected that a WiFi network will be available to us for our highspeed data requirements in urban public spaces, and the vast majority of homes with a broadband connection will have their own WiFi network. The benefits of wireless data communication are clear. The lack of cabling requirement and the associated convenience have clear potential benefits for the installation of a smart home system, although there are also clear issues that require addressing such as interference, security and robustness (Wang et al., 2014). There are many RF-based home control systems commercially available but this chapter will concentrate on those that offer open source or licensed protocols. As was mentioned, all the organisations that offer bus-based systems also offer complimentary RF protocols. This section will concentrate on those other protocols developed specifically for application in the RF domain that are considered most directly relevant to smart home systems.

Z-Wave Z-Wave was developed specifically for the home automation market by Zen-Sys and acquired by Sigma Designs in 2008. It is a low-power, low-latency wireless mesh network. A mesh network can use intermediate devices called nodes to assist a command in reaching its intended destination. Z-Wave devices can do so by attempting multiple routes, which are defined in a table. The system operates in the sub-1-GHz band and is

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therefore unaffected by other wireless technologies. The protocol is contained in a proprietary chip and can be obtained as part of an OEM developer’s kit if the purchaser joins the Z-Wave Alliance. The Z-Wave Alliance, which is responsible for issues such as interoperability, was formed in 2005. It is claimed that there are currently over 1700 Z-Wave products available.

Zigbee Zigbee is a low-cost, low-power, wireless mesh networking standard IEEE 802.15.4 operating in the 2.4 GHz range, and was developed specifically to be cheaper and simpler than other Wireless Personal Area Networks (WPANs) such as Bluetooth. It is intended for intermittent data transmission at low rates over relatively short distances from ‘sensors’ and uses either mesh networking or star or tree configurations to achieve the required transmission. A network requires one coordinator device to manage the network and in a star network this must be the central node. It is ideally suited to be embedded in everyday devices for home automation and medical device data collection. The Zigbee Alliance promotes the platform as a natural choice for the Internet of Things (IoT) and has recently underpinned its commitment in this area with the unveiling of Dotdot in January 2017, which is proposed as a universal language for IoT devices.3

EnOcean EnOcean is a patented wireless energy harvesting technology for use in areas such as home automation. The devices combine microenergy converters with ultralow power electronics to create devices that are powered by their own operation and therefore do not require an external power supply. This makes it ideally suited to retrofitting applications. The EnOcean wireless standard was ratified as the international standard / 14543-3-10 in March 2012, which covers OSI standard layers 1–3.

Bluetooth Bluetooth is another WPAN standard, operating in the 2.4 GHz range using a method called frequency-hopping spread spectrum. It is designed to operate at a distance of between 10 and 100 m, although it typically operates at 10 m or less. Its development began in 1989 at Ericsson Mobile under the title ‘short-link’ radio technology, to allow communication with wireless headsets and was named Bluetooth in 1997 while it was being repurposed by Intel for communication between mobile phones and computers. A master device can communicate with up to seven devices within an ad-hoc Bluetooth network, called a piconet, within which master/slave roles can be switched. Bluetooth was standardised as IEEE 802.15.1. It has undergone continuous evolution, with Bluetooth 4.0 also known as Bluetooth Smart incorporating Bluetooth LE (low 3 http://www.zigbee.org/the-zigbee-alliance-to-unveil-universal-language-for-the-iot-from-ces-2017making-it-possible-for-smart-objects-to-work-together-on-any-network/.

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energy) being adopted in 2010. There are a number of home automation devices that are Bluetooth enabled, such as locks, blinds and LED lighting, but what makes this technology so important in the assisted living arena is its mass market penetration via computers and especially smartphones. A large-scale proliferation of Bluetooth-enabled sensors and compatible apps in the health and well-being sphere can be seen. Bluetooth LE in particular offers many possibilities in terms of wearable devices that can communicate with smartphones. Most new smartphones running Android, iOS and Windows are now offering Bluetooth LE as standard.

Thread Thread was founded in July 2014 and is a new open wireless protocol for home automation. It was founded by a number of key players, including Google’s Nest Labs, Samsung Electronics, ARM Holdings and Silicon Labs. Based on the IEEE 802.15.4 standard it is an IPv6-based mesh network that will allow a large number of low-power devices to connect securely with each other within a network and directly with the internet. A number of open source implementations of the protocol are currently available to developers.

Internet Protocol Both for high-speed local connectivity over longer distances, and to facilitate remote access and access to cloud services generally, networking protocols have to offer the ability to communicate over IP. Some systems offer gateways for this and some offer it natively, especially the newer wireless systems. Of particular interest in relation to this is how all the services that can be accessed over IP can be brought together in an efficient and meaningful way for the consumer in the domestic environment. It has long been envisaged that the home would contain a hub that was the entry point and manager of these services, and clearly standards are required if such hubs are going to operate easily and reliably.

OSGi Open Systems Gateway Initiative (OSGi) is a Java-based platform for developing and deploying modular software programs and libraries. The vision was the creation of a standardised middleware for smart devices by providing a vendor-neutral application and device layer application programming interface and functions. The OSGi Alliance was founded in 1999 by, Ericsson, IBM, Motorola and Sun Microsystems, among others. It was later incorporated as a nonprofit corporation called the Connected Alliance. A number of gateways conforming to this standard have been developed. With this brief overview of the technological landscape, the authors will summarise the attempts that were made in the United Kingdom to harness these technologies to support assisted living. These will highlight both the underlying ethos and the practical issues, which will both be discussed.

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Smart Homes in the United Kingdom INTEGER Intelligent and Green (INTEGER) was a consortium of over 150 companies promoting intelligent technology for managing the systems within the home and for communications to and from the home. It was formed in 1996, and following the development of a strategy in 1997, the INTEGER house was built at the Buildings Research Establishment (BRE) Garston site for the BBC ‘Dream House’ series. The INTEGER house incorporated a variety of smart house systems: 1. KNX – lighting. 2. Echelon – heating and access control. 3. EHS – white goods.    The ideas encapsulated in this original design have been developed and incorporated into a number of projects. These ideas have continued to be developed and a number of these projects have been reported, only one of which has significant health and well-being (Nicholl and Perry, 2008). BRE published guidelines relating to smart house systems in 2003 and 2008, and completely refurbished the INTEGER house in 2013 (Bromley et al., 2003). The first UK-based smart home project to look specifically at the requirements of people with disabilities was cosponsored by the Joseph Rowntree Foundation and Scottish Homes and ran from 1996 to 1999. This led to the development of two exemplars: the KNXbased Assisted Interactive Dwelling (AID) house in Edinburgh, and the LonWorks-based Smart Flat in York, their development being fully documented in the book Digital Futures (Gann et al., 1999).

The AID House The AID house included a full range of sensors: heat, gas, smoke, thermostats, light level, light/mains switches, doors, doorbell, windows, motion, pressure pads, cooker and taps; and control: lights, mains, blinds, windows, windows, radiators, keyless entry and touchscreen (Bonner, 1998). It was established initially as a demonstrator and was influential in catalysing various stakeholder groups’ involvement with technology. The demonstration site was handed over to a disabled couple in 2001 who made significant use of the technology within the property (Gann et al., 1999). The property remained fully operational over a decade after opening. This project led directly to commissions for two further projects: the Paisley Smart Flat and Lilybank. As part of ‘Glasgow 1999 – Year of Architecture and Design’, Edinvar were commissioned to install a KNX system into a ground floor flat belonging to Glasgow City Council. The flat layout was designed with dementia sufferers in mind and was remodelled to meet the needs of such individuals, which included the design of doorways, bathroom and gardens. The general design requirements were specified by Professor Mary Marshall and her

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team at Stirling Dementia Development Services and it incorporated relevant technology, similar in configuration to the AID house. Glasgow City Council wanted the flat to be able to accommodate a wider range of disabilities and after its initial use by a dementia sufferer, it was used by a young adult with acquired brain injury (ABI). It is not known what proportion of the technology continued to be used but the system remained operational and the property was then managed by Glasgow Housing Association (Brownsell and Bradley, 2003). Angus Community Care Charitable Trust (ACCCT) became active in the use of smart house systems, following a visit to the CUSTODIAN (Conceptualisation for User involvement in Specification and Tools Offering the efficient Delivery of system Integration Around home Networks) demonstrator in Dundee. ACCCT led a multi-agency project at Lilybank, Forfar, for people with learning disabilities and challenging behaviour. It consisted of three properties: one residential home for four people and two units each providing 10 supported living accommodations. The system infrastructure was based on IHC (LonWorks), and incorporated a full array of sensors (door and window alerts, flood detection and presence detection) and actuators (access, lights, appliances and water). Staff could set alerts, which were received/acknowledged via pagers. The care and maintenance of the building was taken over by Angus Council, who decided not to purchase a specialist maintenance contract for the system, so after the initial 12 months of technical support, the system fell into disuse over a relatively short timescale.

The York Smart Flat The York Smart Flat was implemented at a bungalow in York. This system consisted of an Echelon powerline-based system, and was installed over the same timeframe as the AID house, again incorporating a range of sensors (smoke, light, heat) and actuators (lights, doors, windows, heating, audio feedback). Phillips lighting controllers were used in combination with proprietary Zytron multisensors and the authors reported some issues regarding ‘interoperability between different, but supposedly compatible, components’ (Gann et al., 1999). Additionally, the system integrators were required to design their own module that incorporated both input and output nodes within a modified ceiling rose. Following the initial evaluation the facility was never used for real-life care support, and was decommissioned in 2000. This project led directly to the commissioning of the Wigton smart home project.

Wigton Smart Home Cumbria Social Services took the decision to explore the use of smart home technology, and following a visit to the Joseph Rowntree Foundation project in York, approached Home Housing Association to retrofit two installations into social housing bungalows in Wigton. Only one of the properties was actually implemented due to unspecified difficulties with the project. The bungalow, which was originally intended for the use of older people, was based on IHC (Echelon) infrastructure incorporating sensors (flood, bath temperature and

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toilet flush) and actuators (lights, windows, doors, front door and remote switching of a kettle). The system could be operated from wall switches and a remote unit and the video entry allowed messages to be left at the front door. The unspecified problems associated with the project development meant that proper maintenance arrangements had not been put in place. The result of this was that as elements of the technology malfunctioned they were not replaced, which led eventually to the complete removal of the system. Although the bungalow does anecdotally appear to have been a short-term success, the experiences associated with the abandoned second project bungalow and failing to negotiate effective maintenance ended Cumbria’s interest in developing a smart house strategy and their focus is currently on wide-scale telecare rollout.

CUSTODIAN CUSTODIAN was a fourth framework project funded under the Telematics Application Programme DE4004 that sought to develop smart home software to enable the design of smart homes for disabled people. The 4-year project comprised parties from Reading University, the University of Porto, ABB, the Centre for Brain Injury Rehabilitation (CBIR), Royal Victoria Hospital, Dundee, Ninewells Hospital and lead partners the Robert Gordon University. In designing the software the project also funded the development of smart residences, including the first system designed specifically for an individual with an acquired brain injury. The Dundee demonstrator led directly to the transitional living unit (TLU), Tayside Learning Disabilities (LD)resettlement project and the Cambus Smart Cottage (Dewsbury et al., 2001, 2002; Edge et al., 2000). The TLU was a fully adapted, community-based accommodation that was developed jointly in 1999 by the CBIR, Royal Victoria Hospital, Dundee, and the Housing Department, Dundee City Council. It was established to support various aspects of the rehabilitation of in-patients of the CBIR with ABI. In 2005 work began to modify the TLU to incorporate a full KNX-based system to increase its value as a rehabilitation tool and assessment facility, and fully assess the viability of the technology in patients with ABI. The system design was carried out with support from a clinical team from the CBIR, consisting of a clinical psychologist, occupational therapist, speech and language therapist and nurse. It was agreed that the facility should be designed to cater for use by adults with learning disabilities, so the Tayside Adult Learning Disability Service provided a clinical team to support the design specification process. Key design criteria included the need for the flat to accommodate the needs of patients with ABI; in particular that it should present a familiar environment that required no relearning for its operation. The ‘Smart TLU’ was comprehensively configured for both sensing (passive infrared sensors (PIRs), presence detection, door and window contacts, thermostats, smoke, heat, gas, flood and all light/mains switches) and actuation (lights, mains, doors, windows, water, gas and radiators). Each room incorporated signal interfaces with a number of channels of freely configurable input/output, some of which were allocated for control of voice recorders used to provide verbal feedback. The facility could be monitored and controlled remotely over a secure internet connection and also incorporated both a telephone

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dialler and an automated emailer. Significant design work went into ensuring that the environment was intuitive to use. As well as being a functional clinical facility, the ‘Smart TLU’ also functioned as a demonstrator, playing a key role in facilitating other developments within Tayside and elsewhere in Scotland. It was presented at various scientific meetings (Linskell, 2005, 2006a,b). Unfortunately, the facility was not able to be used in the way envisaged, largely because it was fully based in a community setting, yet the users were still in-patients and their activities had to be governed by hospital practice and regulations, which meant that establishing effective working procedures proved too challenging. After a period of nonuse the facility has been adopted by Dundee City Council and their outtake service is now using it to explore ways of preparing very long stay patients for discharge from hospital. Building on the success of the initiatives within Tayside, and in response to poor experiences in the use of conventional technologies to support clients with challenging behaviour, three smart house projects were commissioned between 2006 and 2007. The projects were contracted by three different registered social landlords: Abertay Housing Association, Servite Housing Association and Perth Housing Association, on behalf of NHS Tayside, Dundee City Council and Perth City Council. The projects were designed for adults with learning disability and challenging behaviours in a supported living environment. The challenge was to provide these individuals with tenancies where their level of independence could be increased beyond that which had previously been envisaged by the augmentation of care with smart technology. Supporting individuals with challenging behaviours in their own tenancies represents a different challenge to supporting them in a group-living or residential care environment. The three projects differed in the type of accommodation provided and the nature of the client management issues (Linskell and Hill, 2010): 1. Six client flats and a staff flat spread over two floors within a new, mainstream residential block. Some of the service users had previous experience of living in group-living environments and had a range of learning disabilities that made them vulnerable. All had the eating disorder Prader–Willi syndrome. Main system elements included activity monitoring in flats (all doors and windows), front door, flood and smoke sensors, zoned heating, mains control and distributed carer alert. 2. Four client bungalows and a staff bungalow spread over two blocks on a new housing development. These individuals were all being resettled from long-stay hospitals, had never lived independently as adults and were a danger to themselves and their carers. Main system elements included access control, distributed personal attack warning system and door, window, flood and bed monitoring. 3. Six client flats and a staff flat in a dedicated block. These individuals represented a potential danger to themselves and their carers. Main system elements included access control, flat front door monitoring, movement monitoring within flats and in corridors and a distributed personal attack warning system. There was also CCTV monitoring of all shared internal spaces, which was also fed to the carer portable units, described later.   

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All three projects were delivered using KNX infrastructure (Linskell, 2010). They all incorporated high-end logic devices that linked all the alerts in a tree structure, allowing the overall alert status for each accommodation to be calculated as green, yellow or red. This information was available centrally from a PC acting as a server, KNX-based LCD display panel and portable units, discussed later. PC integration was achieved via a hardware and software solution using the EIB IP/Net protocol. Alerts generated audible warnings using sound files, so they could be context specific. Carers used intuitive web pages to monitor status and set the alert level of each alert source, i.e., whether its activation contributed to the calculation of a yellow or red alert status, or was disabled. Additionally, the level of individual alert signals could be set automatically based on additional information such as time of day, number of alerts within a given timeframe or a particular combination of other events. Staff determined the supervisory parameters for each individual’s monitoring system on a case-by-case basis at any time, and so flexibly altered the system response based on both client and carer requirements. This allowed the supervisory system to match the pattern of care required, rather than requiring the care regime to adapt to the technology. Programming was carefully matched to associated carer operational protocols and documented accordingly. The benefits of system flexibility and the ability to reflect changes in real time described in these projects were illustrative of the general benefits that intelligent systems can offer in the assisted living environment. Carers made mobile connection to the system with WiFi-enabled, touchscreen personal digital assistants (PDAs). The performance of the PDAs was optimised by the implementation of a Java-less version of the server. When the PDAs were logged on to the server they remained connected, even when in powersave mode, allowing them to run continuously for a number of days without recharge. The top-level page displayed the accommodations as rectangular blocks in a layout that reflected the layout of the accommodations. Each block was depicted in the colour of its current status, thus the statuses of all accommodations were viewed simultaneously and could be assessed accordingly. Tapping on one of the blocks linked to a summary screen of the alerts for that accommodation. In this way carers could intuitively assess the overall alert status of all the accommodations and make considered decisions about how to react to situations that arose.

Cambus Smart Cottage Clackmannanshire Council commissioned the development of a cottage in Cambus to include a smart house system. The project, which was funded through the Scottish Telecare Project, was based on the KNX platform. The cottage, which was primarily for use by Learning Disability Services, was required for respite and assessment, and had been adapted as part of the project to be fully accessible. It included a full range of automation (lights, mains, doors, blinds, heating and bath) and monitoring (heat, gas, flood, doors, windows, warden call, attack and presence). It had been configured for remote monitoring and control and it incorporated an alert management system with a PC, display panel and PDA access. The system was programmed for red alerts to automatically trigger

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the dispersed alarm system, although how the remote access facility was to be used to moderate service response was never resolved. This was largely because of the technical challenges of incorporating remote access into their proprietary alert management system. The system also included a video door entry system that had the capability of being diverted to a mobile phone. This system is still in operation but the remote access facility has been withdrawn.

Bath Institute of Medical Engineering In 1999 the Bath Institute of Medical Engineering (BIME), in conjunction with Dementia Voice and Housing 21, formed a consortium to develop a smart house, the Gloucester Smart House, which was launched in June 2000 (Orpwood, 2001). It was designed as a show home to demonstrate how smart technology could be applied sympathetically and as a test bed for disability-specific devices. BIME took the strategic decision to work with KNX technology and subsequently designed a number of compatible devices intended to support a dementia sufferer in remaining effective within their living environment. These included: 1. Bath monitor – bath taps contain encoders that provided input data to the water control system, which also monitored water level in the bath. These information sources were linked to bathroom presence monitoring, with feedback provided to the user by recorded voice prompts, allowing the process of initiating and managing the filling of a bath to be monitored and supported in a safe and intuitive manner. 2. Cooker monitor – encoders in the cooker controls were used, as with the bath monitor, in combination with gas detectors and spot temperature measurements, to provide a safe cooking environment. 3. Voice feedback system – this was initially provided via a radio, following detailed user evaluations, but was later transferred into a standalone speaker system.    The decision to work with the KNX system had been justified on the basis that the environment for specialist device development is improved when designers are freed from developing infrastructure; additionally, this approach facilitated technology transfer (Adlam and Orpwood, 2008). They had previously recognised the necessity to investigate wireless options (Orpwood et al., 2001), which were then implemented in the Bristol flat, reported later. Following the success of the smart house in Gloucester, Housing 21 agreed to the installation of two real-life installations, one in Hillside Court, Bristol, and one in Deptford, London (Adlam and Orpwood, 2004). Both of these accommodations were within extra care housing schemes, the Bristol flat being intended for intermediate care. The Gloucester Smart House closed in 2004, with all technology being stripped out, when the work began on the Bristol flat, with the agreement that its role as a demonstrator role could be transferred to this new facility. This demonstrator role was never implemented on the Bristol site as staff on site were uncomfortable with this arrangement.

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A detailed evaluation of the use of the Deptford flat has been performed (Orpwood et al., 2008), with very positive results. BIME worked with Housing 21 and care providers to program the system to meet the needs of an individual with dementia. This involved assessing the individual, monitoring them for baseline performance on entry to the accommodation and then programming the flat to address the specific identified needs. Voice feedback, via prerecorded messages, was used to guide the individual in performing certain tasks safely. A number of key events triggered the care alarm system: 1. If the user, having being discouraged from going out in the middle of the night, still did so. 2. If the cooker had to be turned off automatically for any reason. 3. If there were signs of the user being anxious and restless at night.    The results indicated that key aspects of the individual’s lifestyle had been either retained or improved with the support of the technology. This use of the flat and the study ended after a year when the tenant unfortunately died. Following this, the local authority chose not to continue with the initiative and the flat passed into the conventional care stream and is currently occupied without the involvement of the technology. Unlike the Deptford flat, which was fitted with a full KNX twisted pair system, the Bristol flat was fitted with KXF RF devices and proprietary wireless PIRs, which were then interfaced to a KNX twisted pair backbone to allow for higher-level information management. It was set up to operate in a similar manner to the Deptford flat and although it never fulfilled its function as an intermediate care facility, it was used by a long-term tenant with dementia, who made full use of the technology, as described previously (Adlam et al., 2009).

John Grooms Housing Association A project was developed under the auspices of the University of Portsmouth, including an extensive user needs evaluation. The project involved the installation of systems into 6 out of 50 social housing units for John Grooms Housing Association (renamed Livability). Three of the flats were ground floor units, designed for wheelchair users, with full systems. The other three flats were first floor flats and had preparatory cabling for future use. The chosen technology was Echelon. For the plan the central device was the Zytron sensor, which incorporated occupant motion, lighting level, temperature level, gas leaks, carbon monoxide, humidity and smoke detection. An infrared (IR) receiver was included as well but difficulties were reported with this at the time. There was a significant level of automation planned with control of all doors, windows and water, as well as video security and digital utility meters. Attempts were made to avoid the creation of a disability ‘ghetto’ on the development, and this was implemented by building the properties on one side of a cul-de-sac that had otherwise been designated for six private homes. The ground floor properties were fully equipped for the official launch in 2002, and although some of the automation was removed following this event, the systems were implemented for the residents.

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There were significant complications during the construction phase and the specialist technology contractor was changed several times before the properties were actually built and commissioned, which meant that the project took many years to implement instead of the planned 6–12 months. This had a significant bearing of the success of the development, which informed and influenced the development of ideas relating to the effect of the planning and contracting process on the success of such specialist projects. This has led to a detailed critique of the failure of ‘design and build’ contracts to adequately facilitate the installation of smart house systems (Chapman, 2008; Linskell, 2011). A formal evaluation of the project has been published and it has been reported that the systems are still fully operational and have been well received by the users (Chapman and McCartney, 2002).

The Cedar Foundation The Cedar Foundation worked in collaboration with Habinteg Housing Association in the application of smart house technology, basing their developments on KNX infrastructure supported by environmental control equipment. They had three operational smart facilities that they formally reported on. Their first development, Hillmount Close, opened in 2003. This accommodation consists of two blocks, each with four apartments on two levels. The four ground floor apartments were fully accessible for wheelchair users and three of the upper flats were designed for able-bodied individuals with brain injury or sensory impairment. The ground floor apartments offered a full range of automation (doors, windows, blinds, heating and lighting, security and IR control) and safety monitoring. The three upper apartments offered safety monitoring and had preparatory cabling for full automation. The project is documented in a report (Gilliland and Martin, 2005), which also provides useful background to the evolution of Cedar Foundation’s strategy for the implementation of smart technology. An evaluation of the development from a user perspective was published (Martin et al., 2005) and the full report offered recommendations for the further development of this technological approach, which were adopted by Cedar. Two further projects followed in 2007. Hillmount Court consists of five bungalows that were built to replace a group living facility and were intended for transitional living; as well as Ardkeen, which consisted of 10 apartments. Both developments offered a full range of automation and safety features and were intended for a mixed population of wheelchair users and individuals with brain injury and sensory impairment. The outcome of both developments is documented in a report, which again focused on tenant and carer satisfaction and provided some helpful insights into the value of smart technologies for these client groups in facilitating and developing supported living (Martin and Beamish, 2008). The Cedar Foundation documented their ongoing commitment to building on these successful experiences with smart technology (The Cedar Foundation, 2008) and have been satisfied with the recommendations of their partners to install hardwired infrastructures in new builds. They have also acknowledged that the role of the technology could be extended, especially in support of altered and less obtrusive caring of vulnerable individuals.

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Hereward College Hereward College have been implementing cabled infrastructure smart house systems for a number of years. Hereward College is a further education college based in Coventry that has specialist facilities to cater for students with impairments on a residential or dayonly basis. Since 2001 Hereward College have been incorporating KNX-based technology within their residential blocks on an assessed need basis, with funding from the Learning and Skills Council. They have 24 KNX-enabled rooms.

Manchester Methodist Housing Association In 1999 the Manchester Methodist Housing Association, in collaboration with Bolton Council, undertook two smart house projects as part of a regeneration project. They were Lever Edge Lane, which consisted of eight flats and four bungalows, and Hope Mill, which consisted of 18 flats and bungalows. The projects were implemented with IHC (Echelon) infrastructure, with an emphasis on safety and security, including sensors (PIRs, smoke detection, water leak detection, water usage, night activity and front door) and actuators (heating, lighting, emergency access and emergency distress light). The system could be programmed to dial different telephone numbers depending on the alert, but the system was not linked into the dispersed alarm system, which was standalone. There was also a video entry system linked to the television and there were specific programmes for ‘exit mode’, automatic occupancy simulation when unoccupied in the evening and energy-saving heating management. Unfortunately, the projects were not that successful, as it appears that the tenants chosen were in general not appropriate, and the use of the accommodations had not been thoroughly considered. There is no record of what happened to the technology within these developments. The projects just described were all based on either KNX or LonWorks infrastructures. A number of systems based on proprietary technology were developed in the United Kingdom and there is one that is worthy of discussion here, as it was developed specifically for independent living situations and was utilised in a number of projects.

Millennium Homes Project The Millennium Homes Project was led by Professor Heinz Wolf, Brunel University, and was funded by a joint The Engineering and Physical Sciences Research Council (EPSRC)/ The Department of Trade and Industry (DTI) Foresight grant to develop caring technology for the elderly. The underlying ethos was that technology could be used to monitor individuals in a quasistable state, to support them in performing daily tasks and identify when they might begin to struggle to cope (Perry et al., 2004). One of the underlying principles of the system was to use cheap, easily available, offthe-shelf sensors. The system had various alarm states with different priorities and it accounted for factors such as time of day, resident activity and location and urgency of the situation, and then selected the appropriate mode of communication. The time allowed between communication attempts, and the number of communication attempts before an external alert call was sent, was set on an individual basis (Dowdall and Perry, 2001).

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A demonstrator/evaluation cottage was developed at Brunel University and this was followed by the Caring Home Project that consisted of 12 ‘silent homes’ in Greenwich, which were further described as ‘caring not smart’. The Millennium Homes technology was implemented in the Elmington Supported Living Scheme, Southwark, London. Following a presentation by Heinz Wolf on the Millennium Homes Project, technology was installed at build to ensure that it was integrated in an unobtrusive manner. The project, which was opened in 2004, consisted of two, three-bedroomed, semidetached houses, one of which was designed for wheelchair accessibility and the other built to the Lifetime Homes Standard. Eight staff provided 24-hour care to five residents, three males in one house and two females in the other, one of whom was a wheelchair user. The system incorporated a large array of sensors, including PIRs, heat, smoke, light level, door, window, chair, bed and call. Output devices included some lighting control and voice prompting for feedback. The peripherals were integrated within the computer-based system, which was an integrated environment that monitored activities of daily living and interacted with the user, as appropriate. The system consisted of several modules that could be activated as required, including bathroom safety, night-time occupancy and visitor and night exits. All voice messages were tailored to suite the individual. The scheme was reviewed in 2005 and was received positively by tenants, carers and families. Revenue funding was obtained for the scheme at this time. Huntleigh installed a total of 15 systems, three of which were ‘live’, before the project ended. Although nothing more was derived directly from this work, some of the expertise that had been gained in developing and marketing the systems has contributed indirectly to the development of the iCue system.

iCue The iCue system was built on the approach that was applied in the Millennium Homes Project, using a proprietary central controller to manage the data. The central controller had 128 inputs and 128 outputs, some of which could be analogue; current monitoring; could interface and communicate with many external systems; could flexibly route external communications; and included a great deal of programming capacity. The system was refined with funding from the Technology Strategy Board’s Assistive Living Innovation Platform (ALIP) programme as part of Intelligent Design Engine for Assisted Living Technology, which was led by Medilink WM and was showcased within the i-House. A second demonstrator was installed in a flat in Newcastle under Lyme, also operated by Medilink, and further systems were implemented. One installation of particular note was the Brain Injury Rehabilitation Trust (BIRT) Assistive Technology House. The house was owned and managed by BIRT. The technology was installed specifically to investigate how technology could support the rehabilitation process in preparing individuals with ABI for return to living independently. This work was implemented, evaluated and documented with the support of BIME and represents one on the few meaningful attempts to quantify directly the benefits of advance technologies on individuals with complex needs (Oddy et al., 2013).

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Table 8-1  Range of User Groups Range of user groups that smart home technologies have been applied to within the United Kingdom Older people Dementia Physical disability Acquired brain injury Learning disability Challenging behaviour Sensory impairment

Table 8-2  Range of Applications Range of applications of smart home technologies within the United Kingdom Automation Safety monitoring Support of lifestyle Lifestyle monitoring Carer support

Table 8-3  Range of Technologies Range of smart home technologies used within the United Kingdom (No. of systems in parentheses) KNX (22) LonWorks (6) PC with off-the-shelf data capture card and sensors (3) Proprietary controller with a combination of custom and off-the-shelf sensors (6)

Tables 8.1–8.3 summarise the activity associated with the previously described projects (Linskell, 2011). The authors have described where, how and why various smart home technologies have been utilised to support independent living. Success is dependent on making a commitment to a particular approach and allowing time for the expertise and confidence of all stakeholders to develop. The uses to which smart home technology can be applied to support independent living will now be discussed. There have been attempts to categorise the functional aspects of smart home systems (Bejarano et al., 2016), but none have proved compelling or gained traction. This discussion will refer to the function categories presented in Table 8.2, which are based on the authors’ own investigations, to highlight some of the benefits and issues associated with the use of such technologies.

Automation Automation is probably the most fully explored and readily perceived application area for using smart house technology to facilitate independence and has tended to be the

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first addressed in descriptions (Stefanov et al., 2004; Cook and Das, 2005; Martin et al., 2008; Gentry, 2009). For a person with a physical disability, assistance in performing basic, everyday tasks and generally enhancing their control of the local environment clearly has the potential to offer considerable benefit. In some cases this automation has been applied in a relatively fixed, predetermined manner, which it could be argued does not necessarily make full use of the capabilities of a smart system. There are a number of potential benefits associated with using a smart home system for automation and control.

Flexibility in Control Layout The ability to control a device or combination of devices via a number of different possible input options allows the living space to be designed to meet an individual’s specific needs and preferences. There appears to be an implicit assumption in much of the literature that all physically disabled individuals desire devices either to function in a fully automated manner or via some form of remote control. There are clearly appreciable benefits in remote control, especially if functions for home entertainment systems can be integrated into the device as well as in conventional environmental control equipment. This level of automation can have significant benefits, which have been ably reported (Martin and Beamish, 2008), such as: 1. Improves functional independence. 2. Reduces the energy required for activities of daily living. 3. Awakens/reawakens latent choice/decision-making capacity. 4. Enables personal growth.    The general policy push toward supported living in recent years has been focused around empowering people. For some physically disabled individuals, however, maximising use of their own abilities is likely to be an important aspect of empowerment, possibly as much as extending the locus of their control within their environment. So the ability to place appropriate manual controls for any aspect of an accommodation’s various functions in any desired location, with minimal reconfiguration of a property, would be beneficial in this context. Simple examples might include the transferring of control of a cooker extractor hood or control of an inaccessible window to a wall switch. This can be viewed from the perspective of both an individual with a degenerative condition who is attempting to maintain their functional abilities and an individual who is rehabilitating. The key issue is that automation has significant benefits and these can be magnified if the technology is genuinely personalised to the individual.

Adaptability of Design The incorporation of smart home infrastructure has been recognised as supporting the ‘lifetime homes’ agenda (Nichol and Perry, 2008; RIBA, 2011), and has the economic advantage of significantly reducing the costs of reconfiguring the property.

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Selectivity Automation is not an all or nothing choice and the ability to selectively enable or disable automation, either centrally or on a room-by-room basis, has a number of benefits. A disabled individual who wishes to maximise their own functional ability may still require the support of automation if, for example, their performance levels diminish throughout the day. Their performance levels may be unpredictable and fluctuate, or their cognitive performance may vary, leading to alteration in cognitive load associated with psychomotor skills (Rotstein et al., 2012; Wolkorte et al., 2015). Being able to selectively enable automation within the living space will help maintain their sense of control and empowerment in the face of unpredictable circumstances. Data on the patterns of how such options are used also has the potential to provide useful information in relation to the trends in the individual’s functional status. Consider a living space that is shared by residents who have differing personal requirements, e.g., a mix of ambulant and wheelchair-bound residents. In this situation, more relevant still is the shared use of a living space by a physically disabled individual and their carer and/or family. Some aspects of automation such as lighting may have a common benefit and preference, but performance of automated door openers is a clear area of possible conflict. It is not uncommon to find door openers in such environments turned off or jammed open, with the loss of privacy and control that this can bring for the intended user. Scene setting to establish a number of combinations of automated response is an effective approach to managing these types of issues, and an intelligent system provides the necessary ease of programming and level of control of such options to meet the above concerns. Scene setting should not be confused with macro functions in environmental control systems, which lack the feedback mechanism to ensure that scenes are safely and effectively managed. ‘Green’ issues have risen significantly up the political agenda in recent years and energy management is becoming more of a central focus for the development and of smart house technologies (Lobaccaro et al., 2016). At a very local level the technologies that are being considered can be used to support this agenda, i.e., efficient use of lighting, heating and electrical appliances and de-energising devices during nonoccupancy. These technologies also offer advantages in terms of connectivity with smart metering systems and wider energy management strategies, providing the opportunity for a detailed understanding of local energy usage and supporting programming to automatically adjust devices based on use of the living space. These benefits have in the past opened up access to government funding initiatives related to energy policy, as in the case of the Ayrshire Housing Association project (Clarke et al., 2008). It also has the important additional local benefit of reducing utility bills for individuals who are already generally financially disadvantaged within society. There are an increasing number of devices available for the domestic market that can monitor and control energy usage, such as smart plugs and heating controllers such as Nest, but beyond the availability of control and monitoring via smartphones it is not clear how integration into the holistic management of an environment would be achieved. There is a national programme to install smart meters to allow occupants to monitor their

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energy consumption and provide remote management,4 but the potential problems associated with mass rollout of such low-cost devices has recently been illustrated.5

Safety Monitoring The passing of critical event information from sensors to external systems or care entities in support of the management of risk for the individual has been employed in a number of projects. It has been used to pass information to carers within the immediate vicinity and to trigger the dispersed alarm system. The Deptford flat configured by BIME supported the individual interactively and also triggered the dispersed alarm unit in certain combinations of circumstances. The Tayside LD projects were heavily focused on monitoring. The British Telecom (BT)/Anchor project developed a dedicated safety monitoring/alerting system, and as a direct enhancement of a dispersed alarm system could be considered a telecare system (Anchor Trust, 1999). But in terms of Doughty’s ‘three generations of telecare’ (Doughty and Cameron, 1996) it is difficult to state exactly where it should be placed. It used arrays of very simple sensors linked by a receiving interface to the standard public communications network, but data was uploaded in packets to a central controller for analysis, and subsequent analysis and action were automatically taken, which comprised automated telephone calls to the individual. The system, which was trialled with 22 individuals across four cities, was demonstrated to create a significant number of false alarms (Porteus and Brownsell, 2000) and although a number of researchers have demonstrated that data from everyday activities might practically be used to identify deviations from normal activity and possible alert situations (Cardinaux et al., 2008), viable solutions remain elusive. Given the challenges still facing effective automated interpretation of activity data, a monitoring system, i.e., one containing primarily sensors, appears in the light of current developments to offer benefits as an adjunct to a telehealth system. It has been shown that some activity data, when directly associated with relevant vital signs monitoring, can potentially enhance the profiling of the individual’s health status (Scanaill and Carew, 2006). Interaction of telecare with smart homes has long been considered as a natural evolution (Tang and Venables, 2000). From the early days of telecare research and development, the development beyond basic active triggering of an alert by the user to more pervasive monitoring was envisaged, and intelligence was considered a key aspect in a fully implemented system. Williams et al. (1998) described implicit capabilities such as: 1. Receiving information from a number of sources. 2. Analysis of the information. 3. Communicating internally within a ‘smart’ home environment and externally with healthcare and emergency services.    4 https://www.ofgem.gov.uk/gas/retail-market/metering/transition-smart-meters. 5 http://www.telegraph.co.uk/finance/personalfinance/energy-bills/11643750/1.5-million-smart-meters-

wont-work-when-you-switch-energy-supplier.html.

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The need to actively link into the local environment for local intelligent response of the property was tacitly accepted in the recognition that consideration should be given to comparisons and compatibility with proposed protocols and standards, which included the leading infrastructure-cabled smart home systems. The monitoring aspects of a smart house system are inherently available as part of its infrastructure and may therefore be considered pervasive. The inclusion within a property of an intelligent infrastructure, which could be used within a monitoring paradigm, offers several advantages over a standalone monitoring system: 1. The type of alert: a.  A smart system has the potential to parameterise sensors, locally and remotely, and have multiple modes of operation. b.  Sensors can be used in combination to provide a more sophisticated monitoring regime, using logical associations with a number of sensor combinations supported simultaneously. The ability to easily reconfigure these relationships is one of the key abilities that differentiate sensors in an intelligent system from a standard monitoring system. c.  Sensor information can be analysed in more sophisticated ways, linking easily to other technologies, which can be supported by a combination of internal and external analyses. d.  The same information that is required to manage energy efficiency and safety is simultaneously available to monitor and interpret the care needs of the individual, which offers substantial cost benefits from such systems. 2. The method and type of communication: a.  Intelligent systems, working to agreed standards, offer a variety of communication options that aren’t restricted to proprietary interfaces, allowing for more flexible integration into suites of technology supporting health and well-being. It is possible to envisage a situation where system programming can be predesigned to incorporate templates for data from a whole range of health and care information streams, which can be integrated seamlessly into whole-person management with ease, as required. The Millennium Homes Project had a series of standardised modules that could be activated, but these were based on the existing array of sensors, which were implemented as algorithms on a PC. With a smart house infrastructure, templates could be preconfigured based on generic input possibilities such as binary inputs, analogue inputs or dynamic parameter passing, using recognised calling protocols within familiar computing environments or dedicated gateways. b.  Intelligent infrastructures are capable of using more than one communication interface or medium simultaneously, particularly being able to manage local and remote communication response protocols in tandem. The distributed nature of the intelligence also means that this can be achieved without compromise of system performance. This offers the flexibility to adapt to whatever standards are being applied to other aspects of the home technology system and whatever external services are proposed or envisaged.   

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There is an economic case for the current wide-scale implementation of simple, telecare rollout to support short- to medium-term social and health policy goals, as is currently the case in the United Kingdom. But the wider agenda could potentially be met with augmentation by a smart house implementation strategy that is driven by a whole systems approach, allowing full benefit to be obtained from the energy management and social and healthcare perspectives. Safety monitoring is thus best viewed in this context.

Active Support of Lifestyle A number of the projects described combined monitoring with local programmed responses to assist in effective and safe occupation of the living space. Some have done this at a generic level, providing a supportive environment for a range of general disabilityoriented needs, such as in The Cedar Foundation projects. Others have been designed and programmed to take account of specific aspects of the disability in question, such as in the BIME smart house projects. The evidence suggests that both of these approaches work and more importantly that they can both be freely incorporated into a living space using a smart house infrastructure. The ability to combine monitoring and automation in a structured way to actively support an individual in their lifestyle is a natural extension of the application of smart home technology, offering a number of benefits: 1. Provides direct compensation for physical and cognitive deficits. 2. Manages risks associated with physical and cognitive deficits. 3. Monitors and responds to progression of a condition or generally deteriorating health status. 4. Monitors and responds to recovery from a condition or generally improving health status.    This approach has been applied to varying degrees within a number of the reported projects. Within the Millennium Homes Project the technology was used to address a number of general well-being concerns with the use of voice prompts and monitoring user response to these. The systems designed by BIME provide interaction by voice feedback and external alarm triggering, based on a series of scenarios developed from individual needs assessments. The system used in the Tayside challenging behaviour projects provides a fully configurable alarming strategy that allows carers to plan responses based on assessed need and rapidly changing circumstances. A number of dedicated, standalone systems have been designed to support cognitive deficit. These have been referred to as both cognitive orthoses and cognitive prostheses, and they demonstrate ways in which effective, interactive technologies can support cognitive deficit (Gillespie et al., 2012). Much of what is described in these approaches can be implemented effectively within a smart home infrastructure. The programming flexibility of a smart house system allows it to be tailored to meet individual needs, both passing and receiving information to actively support occupant lifestyle. A firm appreciation of what aspects of user function require augmentation or replacement allows a system to be suitably configured (Gentry, 2009).

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Lifestyle Monitoring There have been developments in lifestyle monitoring systems (LMS), which is the use of technology for monitoring movements of a person around the living space. Lifestyle monitors track the time that movements occur and can be used to assist in determining when a person gets up in the night or has behaviour out of the ordinary. The only project which attempted lifestyle monitoring, described previously, was the BT/ Anchor project and this reported a high number of false alerts (45 out of 61). Based on a 2-week training set, the House_n group at the Massachusetts Institute of Technology concluded that while the model’s accuracy for some activities is better than chance, it is not as high as expected (Tapia et al., 2004), while an evaluation of a four-person family for a year found that 17 out of 73 unusual states coincide with real-life changes in habitual behaviour (Matsuoka, 2004). A study by Brownsell et al. (2008) reported that lifestyle monitoring requires further development, and another by Hanson and Osipovic (2007) suggested that retrospective interpretation requires large amounts of contextual information and that there are technical and operational difficulties to be resolved before it will be possible to use LMS predicatively. The use of sophisticated analysis methods has been applied to the problem, such as spatial/temporal reasoning, temporal granularity and causal reasoning (Augusto and Nugent, 2006), but accurate prediction of activity remains elusive despite some encouraging results (Suryadevra and Mukhopadhay, 2012). The evidence suggests that LMS will take some time to mature and that large data sets will be required to support effective implementation. Given that a significant amount of baseline data will be required to effectively monitor someone who has been identified at some risk, the implementation of LMS will obviously benefit from a preexisting infrastructure where data might already be continually collected and collated. One can envisage a smart house system incorporating a temporary data buffer, capable of holding a number of weeks of activity data, which is only ‘activated’ and accessed if required to support an LMS requirement. This, along with intelligent energy management, makes another argument for general implementation of home smart technologies.

Carer Support For individuals who have significant, complex needs, such as those with learning disability and challenging behaviour, the relationship of the individual to their environment and those around them can be complex (Felce et al., 2013). Legislation underpins the general policy move to social inclusion and expression of individual rights (Parkin, 2016). Providing care in such circumstances, that is, maintaining dignity and developing integration into a social context, while providing safety and security for the individual and those around them within limited budgets, presents specific challenges that technology is now being routinely asked to address. The complexities associated with creating and

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developing such living environments present significant challenges to carers for the following reasons: 1. Many of these individuals will have had no previous experience of living in their own tenancies and they will take time to acclimatise to their environment and newfound independence, making it difficult to predict their general behaviour patterns. This will also be influenced by the relationships that they establish with their various care givers. 2. Their behaviour patterns will alter over time, as they start to utilise the confidence and new skills that they develop. They may flourish in unpredictable and surprising ways. 3. Some individuals with challenging behaviour will remain difficult to manage, and although they may appear to acclimatise well initially, they will adapt their behaviour to maximise the control of their situation, once the care patterns have been established and they are familiar with the regime; the end of the so-called ‘honeymoon period’ (Campbell and McCue, 2012). 4. Carers are likely to be cross-supporting the clients and each other from within a fixed staff pool, and may have different protocols for how they respond to differing scenarios for each individual. These protocols may also vary depending on the general mood and status of individual clients.    In these circumstances, technologies that primarily support the carers in caring for their clients are beneficial and might be considered necessary. Clearly, the flexibility and adaptability of layout discussed earlier will help ensure that the appropriate information is available, but the key to success is flexibility in configuring the management of the information and in making it available to carers in an appropriate form. There are three main aspects to this: 1. A flexible, user-friendly method for defining and setting alerts that trigger a response. This means that they must not only be easy to physically set, but also that their context is easily understood, so that they can be aligned effectively with the protocols for care provision and the agreed responses to situations that real carers will actually have to perform. 2. An intuitive user-friendly interface to communicate the information for decisionmaking in a rapid and intuitive manner. When multiple scenarios arise at the same time there will generally not be enough staff to deal with them all simultaneously. Therefore swift judgements will have to be made about how to respond. The less cognitive load that the alert management system places on the carers, the better placed they are to make effective decisions. This has a potentially important knock-on effect of reducing the general stress levels that such staff has to work under, which has both health and safety implications and economic implications associated with staff sickness; and possibly more importantly in terms of continuity of care is its effect on staff retention. 3. Efficient restructuring of alerting profiles to meet changing needs, especially unexpected change.    These are the key factors behind the design of the system for the Tayside LD projects. The technology required to achieve these goals may be applicable in other situations where

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small numbers of care staff provide flexible care to groups with unpredictable behaviour. It highlights both the integral role that intelligent technology can play in managing complex situations and also the importance of getting these decisions right.

The Use of Telecare and Telehealth in Assisted Living Telecare Assisted living requires a range of options to ensure that the people who live in the spaces are best matched to their potential support needs. Smart technology is one option and tele (at a distance) care is another. Any attempt to define telecare is fraught with contradictions. Here the authors try to demonstrate the wealth and diversity of the various definitions of telecare. One website definition appears on TelecareAware: Telecare is the continuous, automatic and remote monitoring of real time emergencies and lifestyle changes over time in order to manage the risks associated with independent living.6 This definition contrasts with the following definition by the Audit Commission (2004): Telecare describes any service that brings health and social care directly to a user, generally in their homes, supported by information and communication technology. It covers social alarms, lifestyle monitoring and telehealth (remote monitoring of vital signs for diagnosis, assessment and prevention). A third definition is (Norris, 2002): Telecare utilises information and communication technologies to transfer medical information for the diagnosis and therapy of patients in their place of domicile. A distinct problem with telecare is its lack of a clear definition. Moreover, the definition of telecare is constantly modifying depending on the author. The first definition above situates telecare within the social framework, whereas the second situates it clearly as medically allied, and the third definition sees telecare as solely a medical intervention transferring medical information. To add to the discussion the UK Department of Health’s Care Service Improvement Partnership emphasises the remote monitoring aspects of it as well as its use in reducing admissions in their definition.7 Whereas for Bradley et al. (2002) telecare is a purely medical allied intervention. This can be contrasted with Doughty’s (2007) definition of telecare as an umbrella term for 6 http://telecareaware.com/what-is-telecare/. 7 http://thetelecareblog.blogspot.co.uk/2009/02/defining-telecare.html.

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domestic AT systems. The UK’s National Health Service has tried to outline what it considers telecare to be on its website8 as follows: A telecare system is typically made up of a network of sensors that are fitted all around the home. These sensors can be linked through a telephone line to a call centre. What is clear is that telecare means different things to different people. Some see telecare as the devices outlined next, while others consider telehealth and telecare to be one service. This does depend on whether the view is from a medical or social standpoint. Telecare consists of a range of devices that can produce alerts. This alert can be local (a simple alarm or buzzer) or through a dialled number, similar to traditional call systems. The telecare devices are designed to provide alerts in a stimulus response method, hence if a person makes an alert call the alert is raised. This means that the ‘intelligence’ is built into the device and the device is programmed to do just one thing. There are a range of telecare devices, which include: • Body worn buttons. • Carbon monoxide telecare sensors. • Door sensors/contacts. • Fall sensors. • Fixed buttons. • Gas sensors. • Minimum room temperature sensors. • Mobile phones. • Movement sensors. • Pressure sensors. • Pull cords. • Sensors that monitor activity in the home. • Smoke and heat sensors. • Switches and sensors. • Communication hub and alarm/alert buttons. • Communication hub/base unit. • Water sensors.    In addition there are more health-orientated telecare devices such as: • Medication reminder/pill dispenser. • Epilepsy monitor.    The evidence is undecided on whether telecare is effective or not as the largest random controlled trial (RCT) study undertaken in the United Kingdom called the Whole Systems Demonstrator (WSDAN) proved inconclusive in its findings (Giordano et al., 2011). It is 8 http://www.nhs.uk/Conditions/social-care-and-support-guide/Pages/telecare-alarms.aspx.

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suggested that the devices themselves do what they are supposed to do and that telecare itself when used properly can be of great value, and effectively support people to achieve a greater level of independence. Oudshoorn (2011) outlines many of the positive aspects of telecare in four main points: 1. Telecare technologies change the geography of healthcare by introducing telecare centres as new spaces of care. 2. Telecare technologies contribute to redefining familiar places, most notably the home and public places, into spaces of care. In this process the experience and meaning of these spaces also change. 3. Spaces in which telecare technologies are introduced shape the use and meaning of these devices, which underscore the place dependency of user–technology relations. 4. Telecare technologies participate in creating virtual spaces that introduce new forms of care based on digital proximity, resulting in specific technologies of self.    Pols (2012) suggests that the use of telecare to support people and enable a person to be more independent is not an insular activity; rather for telecare to be successful it requires greater interaction between all parties involved: Whatever type of (tele)care analysed, ‘self-management’ turned out to be a misleading term. There was always some form of ‘together management’, even if the caring partners varied at times. They could be professional carers, telecare devices or fellow patients. Family members, where present, were always involved in one way or another. Rather than understanding care as a practice for treating individuals, it makes sense to look at care in its various configurations, including the place of technology and the relations made with and through it. This gives a better idea of which configurations are worth arguing for or against. Thus instead of seeing telecare as part of a system that supports people it is often used as a rationale to limit access to further support. Telecare is seen as a technological catalyst for implementing a community and ageing-in-place care system that can cope with the increasing long-term care needs of our ever-increasing societies (López, 2010). As a standalone intervention, telecare can be misplaced and ineffective as the people who are to use it might not fully understand how to use the devices or what their purpose is, although there are some excellent standalone devices. The context of care and assisted living are important to the successful deployment of telecare. The person who is to use telecare must buy into its benefits and not feel they are getting second best if it is to work effectively.

Telehealth Telehealth is not a new technology or branch of medicine, nor is it the only solution to delivering health services. Equally, telehealth is not a substitute for clinical consultation,

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but should complement existing healthcare where face-to-face interaction does not make social, clinical or economic sense (RCN, 2012). The Telecare Services Association9 defines telehealth as ‘Telehealth is the remote exchange of data between a patient at home and their clinician(s) to assist in diagnosis and monitoring typically used to support patients with Long Term Conditions.’ Telehealth differs from telecare as it focuses on maintaining health and supporting people with long-term conditions. Telehealth devices are usually connected to the internet to receive updates and send and receive information. Traditional telehealth units consist of a base unit that provides an interactive series of questions for the user and a digital readout of what is being measured. A useful feature of most traditional telehealth systems is the fact that the readings taken by the users can be sent to professionals for analysis and suggestions on how the user’s lifestyle could be altered to improve their health. In this way the person has a level of control over their own lives and their own medical condition. An important feature of both telecare and telehealth is that they have been used to save money and free up people time. Thus a person who has telecare might no longer require support during the day or night as they can call for assistance using telecare if they are in difficulties. Likewise, with telehealth technology the person can control their condition through regular monitoring and this should keep hospital visits down and warn the user when their lifestyle or medication is required to be changed to bring their condition under control. Again the WSDAN project was inconclusive about the benefits of telehealth devices but recognised that they are useful and beneficial to many people with long-term conditions. The benefits of telehealth over telecare are more obvious as there are direct savings on hospital/doctor times and also the time taken for a person to travel to and from the doctor as the information is sent to specialists who provide medical information to the user to avert crises. Telehealth devices provide a method for people to take control over their condition and monitor how their lifestyle can affect their health conditions. Conversely, for people who are hypochondriacs, telehealth can potentially exacerbate their condition and make them overconscious of the minor fluctuations in their condition. The WSDAN project also noted a number difficulties with the use of telehealth in a multicultural society, which include issues of translating instructions into a range of languages so that people could understand, ensuring that the instructions were clear and unequivocal (Foster et al., 2015). Sanders et al. (2012) found that people were reluctant to use telehealth and telecare because of the following reasons: Requirements for technical competence and operation of equipment; threats to identity, independence and self-care; expectations and experiences of disruption to services. Respondents held concerns that special skills were needed to operate equipment but 9 www.telecare.org.uk/consumer-services/what-is-telehealth.

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these were often based on misunderstandings. Respondents’ views were often explained in terms of potential threats to identity associated with positive ageing and self-reliance, and views that interventions could undermine self-care and coping. It is essential to ensure that telehealth devices are not contrary to cultural practices and do not affect the way the person is living. This means that if telehealth is deployed in assisted living it is required to be sensitive to the ecological social infrastructure in which it is deployed. This can be a costly and time-consuming venture as messages are required to be personalised and repetition can cause people to become bored of using the device no matter how much it can benefit them. Greenhalgh et al. (2012) explored a range of reasons why telehealth is not utilised to its greatest extent and suggested that different stakeholders hold different assumptions, values and worldviews, which can lead to the technology not being fit for purpose. This was earlier identified by Dewsbury and Ballard (2014) who put forward a range of reasons why technology can fail if it is not person centred. Personalisation and the ability for technology to grow and evolve with the person, so that as the person’s needs change the technology can be responsive to that change, are central to the effective use of technology to support people in assisted living. One of the issues with telecare and telehealth devices is that they are predominantly unidirectional in response. The alert is triggered and the device sends code wirelessly to activate the base unit, which sends the information to external sources. This means that reprogramming a device to have further or better functionality is very limited or not possible in many cases. Similarly, one of the weaknesses of traditional telecare and telehealth is that they are tied to the phone lines or require a modem to upload the information. What is apparent about modern technology is that it is evolving and becoming mobile, with the increased use of smartphones and tablets to provide content and information to the person wherever they are. This mobility has led to the notion of the IoT, which was a phrase coined by Ashton (2009) that refers to the interconnectivity of mobile devices. This has led to the Internet of Health.

Telehealth and Telecare in Europe Europe, excluding the United Kingdom, has taken a different path to its implementation focusing more on the support and enablement aspects rather than the technological. In Bulgaria, the municipality of Sofia set up its own social assistance system as a reaction to a shortage in social assistants available through the national system. This programme imposed hardly any requirements for the assistants. In contrast, the PreQual project (in Italy, Austria, the Czech Republic, Germany and Hungary) educated migrant women to qualify them for work in the care sector. This scheme tried to match the needs of the labour market with those of migrant women and to provide a future-orientated and innovative solution (Araujo, 2009). In Slovenia, the Slovenian Federation of Pensioners Organisations developed a programme of voluntary work carried out by older people to improve their own quality of life and that of their peers. Feeling lonely is a common problem among older people, so

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programme volunteers help by making periodic home visits; providing various forms of nonprofessional help; or by including lonely individuals in the activities of local pensioners. In the Netherlands, video networks enable home-care clients and home-care providers to contact each other by use of a camera and a screen. A home-care provider can be contacted at any time day or night. An innovation that involves police officers checking on older people in the Czech Republic called ‘Emergency Action’ enables an older person to sign a contract with a police officer who takes a spare key to their house to ensure their well-being (Genet et al., 2012). The Nordic approach to supporting older people is more of a personal one. For example, in Sweden, various parties provide products and services that support frail seniors who live in their homes. When an older person experiences difficulties in managing their life at home, a care professional (occupational therapist) visits the home and typically recommends physical adaptations and certain ATs and an emergency response. Essen (2006) reports: Hence, many seniors grow old in homes that are: originally built by house building companies; adjusted by carpenter firms; added to with various assistive technologies and telecare services; and also incorporating entertainment/communication technologies and kitchen appliances. It seems reasonable to assume that all these technologies impact seniors’ capability to age in place. Hence, we will henceforth label them ageing in place technologies. Today’s overall ageing in place system also includes service components, produced by care providers. For example, there are formal procedures for how care professionals are to receive and respond to the alarms that are sent by the seniors using their pendant emergency alarm devices. The key message from the Nordic countries is that technology by itself is not an answer; it is if anything the wrong answer. Technology cannot and should not replace people in critical situations. Telecare in the home is different from telecare in assisted living. Assisted living has the ability to personalise care and to ensure the technology provided complements the person’s needs and requirements. This was one of the main themes of the CUSTODIAN project in the design of their smart homes. The status of telehealth and telecare integration in Europe is that it is an ongoing development which has already penetrated most countries within the public sector but there is reluctance to purchase the devices within the private sector. Market penetration is limited by factors such as acceptance and trust in the technology as people who use the devices are required to have faith that they will perform the actions and desired responses when circumstances necessitate. The technology must work and not force the person using it to change their behaviour and lifestyles (Dewsbury and Ballard, 2014). Furthermore, PACITA (2014) highlights that unresolved issues around the use of telecare might negatively influence the development, dissemination and further investment in telecare technologies. The issues are grouped as follows: • Unsolved cost provision issues. • Changes in care provision.

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• Data protection issues and lack of legislation. • Ethical issues and fears of declining health services. • User training and education.    The same report suggests that the support of the governments to fund telecare projects and investment by private firms would positively influence the development of telecare. The market for technological interventions is still new and evolving, as is the technology. As technology develops and becomes more responsive to individual’s needs the uptake and use are likely to increase. The authors suggest that part of the difficulty with its use initially is that it was employed before the technology was proven as a response to financial pressures supporting an ageing population. Consequently, telecare was provided instead of, rather than with, other social care benefits. This has led to its poor reputation in the United Kingdom and other countries in Europe. Removing technology from personal care is always likely to be a very short-sighted approach.

The Internet of Health The rise of the interconnected society has meant that health and social care has now become a function that can be undertaken by everyone who has the ability to pair a smart device with a smartphone or tablet. There are apps for a range of issues ranging from producing alerts, automatically calling friends and family when a situation arises or measuring aspects of your health. Free and paid-for apps allow people to take their medical readings and the internet allows them to determine whether these readings are good or bad. These range from simple pulse measuring through more complex assessments and artificial intelligence (AI) diagnostics of the likes of Buoy,10 Babylon Health11 and the remote medical consultation of Dr Now.12 In 2016 when a research project looked at AI symptom checkers against real doctors they found the symptom checkers were significantly less accurate.13 The article reports the limitations of the study; however, it concludes that as AI grows in this area, the accuracy should improve. The use of mobile apps to support care is also on the increase with apps to record data such as activities of staff members with residents as well as record vital signs and other information via a smartphone. Mobile apps allow an individualised interaction with health and care technology so that apps on a phone or smartwatch can provide alerts or medical information. Smartphones and smartwatches can also be controllers of a ‘smart home’ which is Bluetooth enabled. These smart homes tend to provide a very limited ability to modify things and tend to simply turn on or off items and increase or decrease temperatures. As assets ‘mobile phone technology has been turned into a social and encyclopaedia information/research tool’ (Adibi, 2015, p. 232). 10 https://www.buoyhealth.com/. 11 https://www.babylonhealth.com/. 12 http://www.drnow.com/. 13 https://www.nhs.uk/news/medical-practice/doctors-vastly-outperform-symptom-checker-apps/.

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The role of technology in assisted living is central. People can be supported effectively through the appropriate use of technology, but only if the support structures are in place. Since the initial proposal by the UK government to build telecare in England (Department of Health, 2005), the landscape of the deployment and envisaged benefits of telecare and telehealth have been given scant attention. There is considerable interest in the WSDAN project which purported to be a RCT of telecare and telehealth, yet its reporting has been less than regular and the context of the RCT has changed to focus on telehealth rather than telecare. Evidentially, there are considerable amounts of tacit knowledge about the WSDAN project and the uptake of telecare and telehealth. Often, the fact that these systems are used so widely is given as evidence for the value and effectiveness of the systems, while omitting to note that local councils and health trusts were required to implement them and paid to do so or fined should they fail to do so. Brownsell et al. (2008) cites the lack of published information about cost and clinical effectiveness as a major reason why telecare has not become a routine service. Telehealth interventions are built with the intent of improving the care delivered to patients. Individual studies of specific telehealth trials can often demonstrate benefits. However, almost all the independent large-scale systematic reviews and meta-analyses of telehealth produce mixed to negative results. These reviews often are unable to find evidence of benefit (absence of evidence), rather than identifying evidence for lack of benefit (evidence of absence).

Concluding Remarks Telecare and telehealth have limited objective and evidence-based research to support their effectiveness and cost saving. The majority of the evidence has been undertaken by or sponsored by the manufacturers of the devices and therefore the results are often called into question. The issue of cost savings is an almost impossible one to quantify experimentally, as there are savings which are evident from a person who has fallen using telecare to call for assistance, but how is this measured when they do not fall or do not use the devices to trigger an alert? Similarly, telehealth is excellent for supporting self-care and relies on algorithms that produce alerts when readings are out of the normal range. This does save money all around as there is no cost to medical practitioners unless the readings have triggered actions and there is also no associated cost to the person with the long-term condition. There are no evidence/studies that have considered the misdiagnosis or incorrect readings that caused hospitalisation for people using the devices incorrectly. It is therefore difficult to determine the efficacy of either telecare or telehealth. The majority of the evidence has not been written up by practitioners and this causes a number of difficulties for academics and the medical/health profession. The WSDAN project sought to determine the effectiveness of telecare and telehealth, but almost as soon as its

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funding was secured the focus of the study changed from whether the devices worked, which all did to differing degrees, to the implementation and cost savings to health and social care. Coiera (2015) reports that the literature on: Telehealth is often challenging to interpret because so many studies are small, run for short periods, often involve only a single institution and lack control arms in the study design. The Whole-System Demonstrator project was conceived as a way of testing the effectiveness of telehealth when delivered at larger scale, by randomizing patients in the context of routine delivery of care (Steventon et al., 2013). The observed effects of telehealth are also likely to be deeply linked to how these particular health systems operated, with effects potentially attributable to the technology, the sociotechnical processes required to make them work or local implementation variations … The study concluded that the Demonstrator was not a cost-effective addition to standard support and treatment, even if significant drops occurred in the cost of technology. Telecare services in other countries such as Spain and Norway provide companionship and social activity, which is the most appropriate way to consider its implementation (EFORTT, 2011a,b, 2012). Telecare on its own is not a cost saver but rather a false economy. Assisted living provides the expertise of technology systems designed to support people. For these systems to be effective they must be specifically designed for the person’s unique requirements. To achieve this, a robust assessment procedure is required. Currently, there is no accepted assessment for telecare or telehealth. Telehealth is provided through medical practitioners and their medical assessment, and the underlying criteria of the health system they work within will determine whether a person is to receive telehealth interventions. For telecare this is a completely different matter. In the United Kingdom, for example, there is no formal telecare assessment which is universally approved and those that are suggested as being useful tend to be manufacturer led and therefore designed to sell more technology which is often redundant for the person or even worse disabling. Dewsbury and Ballard (2014) developed a tool called the Dependability Telecare Assessment tool. This tool provides a qualitative framework from which to assess a person and considers the person in relation to their surroundings and their relationship networks in helping the person determine the best telecare/telehealth solution. The tool derives from the work of the authors on the Engineering and Physical Sciences Research Council-funded Design Innovation Research Centre project.14 This tool provides a person-centred approach to assessment. It does not produce a product selection; rather it focuses on the needs and requirements of the person and their situation to determine the qualities of the technology that are needed. Greenhalgh et al. (2013) reports that telecare is not an easy solution to demographic ageing or care crises. ‘It cannot perform care on its own.’ This means that assisted living currently has the potential to be a personalised technology producing a supported, meaningful and fun environment in which people can 14 www.dirc.org.uk.

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live worthwhile lives. The proviso is that a personalised assessment tool along with personalised smart technology are embedded in the system from the beginning. The use of telecare and telehealth as peripheral devices to support people is a useful addition to the repertoire; however, the system is required to initially be smart and have the ability to modify and be personalised for each person in the assisted living complex. In addition, staff members are required to support the person, just as the technology is designed to support them. Through the interaction of support and technology the person can become more independent and have a greater potential to live a longer and happier life. The design of assisted living spaces should embrace seven qualities as follows (Dewsbury et al., 2003): • Stakeholder identification. • Budgetary constraints. • Accessibility. • External spaces. • Time and contacts. • The residential structure. • Technology system specification.    Thus currently, designs of assisted living environments must be bespoke to embrace the needs and wishes of the potential users, and they are required to be flexible to those needs, which might require agile change as the requirements change. Linskell and Hill (2010) suggest that there are five further attributes to consider, namely: 1. Adaptability: a.  Infrastructure – easy to reposition or incorporate additional sensors, control devices and reporting devices. b.  Configuration – easy to alter the relationship between system devices. 2. Tiered alert management system – multiple, adjustable alert levels for each service user. 3. Ease of use and flexibility: a.  Simple and intuitive interface. b.  Easy control of which alerts were active. c.  Inhibition of individual alerts without disabling activation of the source signal. 4. Real-time visual reporting – easy-to-interpret, real-time reporting of service user activity. 5. Mobile user interfaces – easy-to-use mobile devices for monitoring, remote control and communication.    Assisted living has the potential to be as near perfect as residential spaces can become given today’s logistical limitations. In the future, technology should become more person centred, and offer greater ability to provide bespoke user-focused support that extends beyond alerts and taking medical measurements. This should be by providing comfort and support as well as the ability to contact other people virtually from the comfort of wherever

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the person is. There is still a long way to go to ensure that this technology is safe, robust and acceptable, but the road map exists and it is down to time to see if anyone follows it. This chapter has provided a detailed description of smart house implementations in the United Kingdom and followed this with a complementary discussion on the functions that are available from a smart house system to highlight the possibilities. This has demonstrated the potential benefits of using smart technology and hopefully indicated how it can support the personalised care agenda, especially for those with complex needs. A number of the papers already referred to have highlighted the lack of an evidence base and some have hypothesised reasons for the lack of proliferation of systems. These include scientific, political, cultural and practical issues. The authors have reported on the practical issues, both in relation to methodologies for assessment and evaluation and the logistical challenges associated with implementing specialist systems (Linskell and Bouamrane, 2012). It is important to investigate these issues to understand how to recognise and avoid the barriers and pitfalls to achieving progress. This field has in general been technology driven, and a number of publications are now heavily alluding to this as a potential source of some of the issues. Without investigating and understanding these matters, naive assumptions that plug-and-play wireless systems and related technological developments will inherently address all past issues15 could lead to significantly more lost time, wasted resources and importantly more loss of faith in the potential of technology to significantly enhance assistive living options.

References Adibi, S., 2015. mHealth Multidisciplinary Verticals. CRC Press, Taylor & Francis Group. Adlam, T., Orpwood, R., 2004. From laboratory to living room: implementing smart house technology for people with dementia. In: UbiHealth 2004: A Workshop of UbiComp 2004, Nottingham. Adlam, T., Orpwood, R., 2008. Off-the-Shelf infrastructure in smart apartments for people with Dementia. In: Milhailidis, A., et al. (Ed.), Technology and Ageing. IOS Press. Adlam, T., Carey-Smith, B., Evans, N., Orpwood, R., Boger, J., Mihailidis, A., 2009. Implementing monitoring and technological interventions in smart homes for people with dementia - case studies. In: Behaviour Monitoring and Interpretation - BMI: Smart Environments, pp. 159–182. Aldrich, E., 2003. Smart Homes past, present and future. In: Harper, R. (Ed.), Inside the Smart Home, first ed. Springer, London, pp. 17–39. Anchor Trust, 1999. Using Telecare: The Experiences and Expectations of Older People. The Housing Corporation, Anchor Trust, BT. Araujo, T., 2009. PreQual basics. In: International Prequalification for Migrant Women Entering into the Health and Care Sector. Linz, Maiz. Ashton, K., 2009. That ‘internet of things’ thing. In: The Real World, Things Matter More than Ideas. RFID Journal. Audit Commission, 2004. Older People: Implementing Telecare. Audit Commission, London. Augusto, J., Nugent, C., 2006. Smart homes can be smarter. In: Augusto, J., Nugent, C. (Eds.), Designing Smart Homes. Springer-Verlag Berlin/Heidelberg, pp. 1–15. 15 https://www.agileageing.org/page/neighbourhoods-future/.

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Bejarano, A., Fernandez, B., Jimeno, M., Salazar, A., Wightman, P., 2016. Towards the evolution of smart home environments: a survey. International Journal of Automation and Smart Technology 6 (3), 105–136. Bjornby, S., 2000. ‘Smart houses’: can they really benefit older people? Signpost 5, 36–38. Blackman, S., Matlo, C., Bobrovitskiy, C., Waldoch, A., Lan Fang, M., Jackson, P., Milhailidis, A., Nygård, L., Astell, A., Sixsmith, A., 2015. Ambient assisted living technologies for ageing well: a scoping review. Journal of Intelligent Systems 25 (1), 55–69. Bonner, S., 1998. Assisted interactive dwelling house. In: IE (Ed.). IE (Ed.), Improving the Quality of Life for the European Citizen. Technology for Inclusive Design and Equality, vol. 4. IOS Press, pp. 396–400. Bradley, D., Williams, C., Brownsell, S., Levy, S., 2002. Community alarms to telecare – the need for a systems strategy for integrated telehealth provision. Technology and Disability 14, 64. Bromley, K., Perry, M., Webb, G., Ross, K., 2003. Smart Homes a Briefing Guide for Housing Associations. Available at: http://www.bre.co.uk/pdf/smarthomesbriefing.pdf. Brownsell, S., Bradley, D., 2003. Assistive Technology and Telecare: Forging Solutions for Independent Living. Policy Press, UK. Brownsell, S., Blackburn, S., Hawley, M.S., 2008. An evaluation of second and third generation telecare services in older people’s housing. Journal of Telemedicine and Telecare 14, 8–12. Calvaresi, D., Cesarini, D., Sernani, P., Marinoni, M., Dragoni, A., 2016. Exploring the ambient assisted living domain: a systematic review. Journal of Ambient Intelligence and Humanized Computing 1–19. Campbell, M., McCue, M., 2012. Assessment of interpersonal risk (AIR) in adults with learning disabilities and challenging behaviour – piloting a new risk assessment tool. In: British Journal of Learning Disabilities, Early View. Cardinaux, F., Brownsell, S., Hawley, M., Bradley, D., 2008. Modelling of behavioural patterns for abnormality detection in the context of lifestyle reassurance. In: Ruiz-Shulcloper, J., Kropatsch, W.G. (Eds.). Ruiz-Shulcloper, J., Kropatsch, W.G. (Eds.), LNCS, vol. 5197. CIARP, pp. 243–251. Chan, M., Esteve, D., Escriba, C., Campo, E., 2008. A review of smart homes – present state and future challenges. Computer Methods and Programs in Medicine 91, 55–81. Chapman, K., 2008. Procurement of ‘smart Homes’ for People with Physical Disability (Thesis). University of Portsmouth. Chapman, K., McCartney, K., 2002. Smart homes for people with restricted mobility. 20 (2), 153–166. Clarke, J., Hong, J., Johnstone, C., 2008. The application of demand-side management via Internet-enabled monitoring and control. In: Proc. 10th World Renewable Energy Congress, Glasgow. Coiera, E., 2015. Guide to Health Informatics. CRC Press, Taylor & Francis Group. Cook, D., Das, S., 2005. Overview. In: Cook, D., Das, S. (Eds.), Smart Environment: Technologies, Protocols, and Applications. John Wiley & Sons, New Jersey, pp. 3–10. Demiris, G., Hensel, B.K., 2008. Technologies for an Aging Society: A Systematic Review of “smart Home” Applications. Yearbook of Medical Informatics, pp. 33–40. Department of Health, 2005. Building Telecare in England. Department of Health. Dewsbury, G., Ballard, D., 2014. DTA: The Dependability Telecare Assessment Tool. gdewsbury. Dewsbury, G., Taylor, B., Edge, M., 2001. Designing reliable smart home technology for disabled people – HomeToys. Home Automation and Home Networking eMagazine 6 (6). Dewsbury, G., Taylor, B., Edge, M., 2002. Designing dependable assistive technology systems for vulnerable people. Health Informatics Journal 8 (2), 104–110. Dewsbury, G., Clarke, K., Rouncefield, M., Sommerville, I., Taylor, B., Edge, M., 2003. Designing acceptable ‘smart’ home technology to support people in the home. Technology and Disability 15 (3), 191–199. Doughty, K., 2007. Telecare Practice and Potential. BT Community and Home Care.

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Doughty, K., Cameron, K., 1996. Three generations of telecare of the elderly. Journal of Telemedicine and Telecare l2 (2), 71–80. Dowdall, A., Perry, M., 2001. The millenium home: domestic technology to support independent-living older people. In: 1st Equator IRC Workshop on Ubiquitous Computing, September 13–14. University of Nottingham. Edge, M., Taylor, B., Dewsbury, G., Groves, M., 2000. ‘The potential for ‘smart home’ systems in meeting the care needs of older people with disabilities, seniors’ housing update. Gerontology Research Canter, Canada 10 (1), 6–7 ISSN: 118–1828. EFORTT, 2011a. Ethical Frameworks for Telecare Technologies for Older People at Home Telecare for Older People Living at Home: Questions for Potential Users and Their Families. Lancaster University Press. EFORTT, 2011b. Ethical Frameworks for Telecare Technologies for Older People at Home Deliverable 7 Final Research Report. Lancaster University Press. EFORTT Research Team, 2012. Ethical Frameworks for Telecare Technologies for Older People at Home. Project 217787. University of Lancaster, Lancaster. Erbes, M., 2008. Smart home health and telematics: standards for and with users. In: Helal, A., et al. (Ed.), The Engineering Handbook of Smart Home Technology for Ageing and Health. John Wiley and Sons. Essen, A., 2006. Workshop 6-housing & Living Conditions of Ageing Populations. In: Developing New Ageing in Place Systems and Smart Senior Homes in Sweden. ENHR. Felce, D., Lowe, K., de Paiva, S., 2013. In: Emerson, E., McGill, P., Mansell, J. (Eds.), Severe Learning Disabilities and Challenging Behaviours: Designing High Quality Services. Springer, pp. 97–118. ISBN: 1489929614, 9781489929617. Foster, A., Horspool, K.A., Edwards, L., Thomas, C.L., Salisbury, C., Montgomery, A.A., O’Cathain, A., 2015. Who does not participate in telehealth trials and why?: A cross-sectional survey. Trials 16 (258). Gann, D., Barlow, J., Venables, T., 1999. Digital Futures: Making Homes Smarter. Chartered Institute of Housing, Coventry Joseph Rowntree Foundation. Available at: https://www.jrf.org.uk/sites/default/ files/jrf/migrated/files/1900396149.pdf. Garwood, S., 2015. Care and Support in Extra Care Housing. Available at: https://www.housinglin.org. uk/_assets/Resources/Housing/Support_materials/Technical_briefs/HLIN__CareAndSupportIn ExtraCare_2015.pdf. Genet, N., Boerma, W., Kroneman, M., Hutchinson, A., Saltman, R.B., 2012. Home Care across Europe: Current Structure and Future Challenges. WHO. Available at: http://www.euro.who.int/__data/assets/ pdf_file/0008/181799/e96757.pdf. Gentry, T., 2009. Smart Homes for people with neurological disability: state of the art. Neurorehabilitation 25, 209–217 (IOS Press). Gillespie, A., Best, C., O’Neill, B., 2012. Cognitive function and assistive technology for cognition: a systematic review. Journal of the International Neuropsychological Society 18 (1), 1–19. Gilliland, E., Martin, S., 2005. Evaluation of Hillmount Close Supported Living Scheme. The Cedar Foundation. Giordano, R., Clark, M., Goodwin, N., 2011. Perspectives on Telehealth and Telecare Learning from the 12 Whole System Demonstrator Action Network (WSDAN) Sites. WSDAN briefing WSDAN briefing paper). Greenhalgh, T., Procter, R., Wherton, J., Sugarhood, P., Shaw, S., 2012. The organising vision for telehealth and telecare: discourse analysis. BMJ Open 2 (4), 370–378. Greenhalgh, T., Wherton, J., Papoutsi, C., Lynch, J., Hughes, G., A’Court, C., Hinder, S., Fahy, N., Procter, R., Shaw, S., 2017. Beyond adoption: a new framework for theorising and evaluating non-adoption, abandonment and challenges to scale-up, spread and sustainability (NASSS) of health and care technologies. Journal of Medical Internet Research 19 (11), e367.

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Greenlagh, T., Wherton, J., Sugarhood, P., Hinder, S., Procter, R., Stones, R., 2013. That matters to older people with assisted living needs? A phenomenological analysis of the use and non-use of telehealth and telecare. Social Science and Medicine 93, 86–94. Hanson, J., Osipovic, D., 2007. Lifestyle monitoring as a predictive tool in telecare. Journal of Telemedicine and Telecare 13, 26–28. Haux, R., Koch, S., Lovell, N.H., Marschollek, M., Nakashima, N., Wolf, K.H., June 30, 2016. Health-enabling and ambient assistive technologies: past, present, future. Yearbook Medical Informatics (Suppl. 1), S76–S79. Linskell, J., Hill, J., 2010. The role of smart home technology in enhancing supported living for people with complex needs and challenging behaviour. Journal of Assistive Technologies 4 (4), p27. Linskell, J., 2005. Smart houses. In: International Conference on Posture and Wheeled Mobility. Exeter, England. Linskell, J., 2006a. The transitional living unit: a smart solution. In: Wilson, A. (Ed.), Practical Solutions to Support Communication. The Call Centre, Edinburgh. Linskell, J., November 2006b. The Transitional Living Unit: The Evolution of a Smart Home. Recent Advances in Assistive Technology and Engineering, Birmingham, pp. 27–28. Linskell, J., 2011. Smart home technology and special needs; reporting UK activity and sharing implemention experiences from Scotland. In: Conference: 5th International Conference on Pervasive Computing Technologies for Healthcare, Pervasive Health Dublin, Ireland. Linskell, J., Bouamrane, M.M., 2012. Assisted Living spaces for end-users with complex needs: a proposed implementation and delivery model. Health Informatics Journal 18 (3), 159–170. Lobaccaro, G., Carlucci, S., Löfström, E., 2016. A review of systems and technologies for smart homes and smart grids. Energies 9 (5), 348. López, D., 2010. The securitization of care spaces: lessons from telecare. In: Schillmeier, M., DomÈnech, M. (Eds.), New Technologies and Emerging Spaces of Care. Ashgate Publishing Limited. Lui, L., Stroulis, E., Nkolaidis, I., Miguel-Cruz, A., Rios Rincona, A., 2016. A Smart Homes and home health monitoring technologies for older adults: a systematic review. International Journal of Medical Informatics 91, 44–59. Martin, S., Beamish, E., 2008. Evaluation of Ardkeen Supported Living Option. Social Research Centre. Martin, S., Nugent, C., Porter-Armstrong, A., 2005. User perspectives: living and working within a ‘smart home’ environment’. In: Giroux, S., Pigot, H. (Eds.), From Smart Homes to Smart Care. IOS Press. Martin, S., Kelly, G., Kernohan, W.G., McCreight, B., Nugent, C., 2008. Smart home technologies for health and social care support (review). The Cochrane Database of Systematic Reviews (4) John Wiley & Sons Ltd. Matsuoka, K., 2004. Aware home understanding life activities. In: Zhang, D., Mokhtari, M. (Eds.), Towards a Human Friendly Assistive Environment. IOS Press, pp. 186–193. Nicholl, A., Perry, M., 2008. Smart Home Systems and the Code for Sustainable Homes. Available at: http:// www.domoenergie.com/usr_file/Pdf/presse/ibexcellence_smart_home_systems.pdf. Norris, A.C., 2002. Essentials of Telemedicine and Telecare. J Wiley & Sons Ltd. Oddy, M., Ramos, S., Harris, N., 2013. Using smart home technology in brain injury rehabilitation: the road towards service development. In: Encarnação, P., Azevedo, L., Gerlderblom, G.J. (Eds.)Encarnação, P., Azevedo, L., Gerlderblom, G.J. (Eds.), Conference: 12th European Association for the Advancement of Assistive Technology in Europe Conference, vol. 33. Orpwood, R., 2001. The gloucester smart house. Journal of Dementia Care 9, 28–31. Orpwood, R., Adlam, T., Gibbs, C., Hagan, S., 2001. User-centred design of support devices for people with dementia for use in a smart house. In: Marincek, C., et al. (Ed.), Assistive Technology – Added Value to the Quality of Life. IOS Press. Orpwood, R., Adlam, T., Evans, N., Chadd, J., David, Self, 2008. Evaluation of an assisted-living smart home for someone with dementia. Journal of Assistive Technologies 2 (2), 13–21.

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Oudshoorn, N., 2011. Telecare Technologies and the Transformation of Healthcare. Palgrave MacMillan. 198 p. PACITA, 2014. Telecare Technology for an Ageing Society in Europe Current State and Future Developments. PACITA. Parkin, P., April 26, 2016. Learning Disability - Overview of Policy and Services. Briefing Paper, Number 07058. House of Commons Library. Perry, M., Dowdall, A., Lines, L., Hone, K., 2004. Multimodal and ubiquitous computing systems: supporting independent-living older users. IEEE Transactions on Information Technology in Biomedicine 8 (3), 258–270. Pieper, M., Antona, M., Cortés, U., 2011. Introduction to the Special Theme: Ambient Assisted Living. Interuniversity Centre for Social Science Theory and Methodology. Pols, J., 2012. Care at a Distance - On the Closeness of Technology. Amsterdam University Press, Amsterdam. Porteus, J., Brownsell, S., 2000. Exploring Technologies Independent Living for Older People: Report on the Anchor Trust/BT Telecare Research Project. Anchor Trust, Oxon, England. RCN, 2012. Using Telehealth to Monitor Patients Remotely. Royal College of Nursing Guide on Using Technology to Complement Nursing. Available at: https://www2.rcn.org.uk/development/practice/ e-health/telehealth_and_telecare. RIBA, 2011. Guide for Assisted Living. Towards LifeHome 21. RIBA Enterprises. ISBN-10: 1859464238. Rotstein, D., O’Connor, P., Lee, L., Murray, B.J., 2012. Multiple sclerosis fatigue is associated with reduced psychomotor vigilance. The Canadian Journal of Neurological Sciences 39 (2), 180–184. Sanders, C., Rogers, A., Bowen, R., Bower, P., Hirani, S., Cartwright, M., Fitzpatrick, R., Knapp, M., Barlow, J., Hendy, J., Chrysanthaki, T., Bardsley, M., Newman, S., 2012. Exploring barriers to participation and adoption of telehealth and telecare within the Whole Systems Demonstrator trial: a qualitative study. BMC Health Services Research 12, 220. Scanaill, C., Carew, S., 2006. A review of approaches to mobility telemonitoring of the elderly in their living environment. Annals of Biomedical Engineering 34 (4), 547–563. Stefanov, D., Bien, Z., Bang, W.C., 2004. The smart house for older persons and persons with physical disabilities: structure, technology arrangements, and perspectives. IEEE Transaction of Neural Systems and Rehabilitation Engineering 12 (2), 228–250. Steventon, A., Bardsley, M., Billings, J., Dixon, J., Doll, H., Beynon, M., Hirani, S., Cartwright, M., Rixon, L., Knapp, M., Henderson, C., Rogers, A., Hendy, J., Fitzpatrick, R., Newman, S., 2013. Effect of telecare on use of health and social care services: findings from the whole systems demonstrator cluster randomised trial. Age and Ageing 42 (4), 501–508. Suryadevra, N.K., Mukhopadhay, S.C., 2012. Wireless sensor network based home monitoring system for wellness determination of elderly. IEEE Sensors Journal 12 (6), 1965–1972. Tang, P., Venables, T., 2000. Smart homes and telecare for independent living. Journal of Telemedicine and Telecare 6, 8–14. Tapia, E., Intille, S., Larson, K., 2004. Activity recognition in the home using simple ubiquitous sensors. In: Ferscha, A., Mattern, F. (Eds.), Lecture Notes in Computer Science: Pervasive Computing. SpringerVerlag, Berlin/Heidelberg, pp. 158–175. The Cedar Foundation, 2008. Breaking Down the Barriers: The Cedar Foundation Strategy 2008–2011. Wang, Y., Hao, X., Song, L., Wu, C., Wang, Y., Hu, C., Yu, L., 2014. Monitoring massive appliances by a minimal number of smart meters. In: ACM Transactions on Embedded Computing Systems (TECS), vol. 13. No. 2s, p. 56. Williams, G., Doughty, K., Bradley, D., 1998. A systems approach to achieving CarerNet-an integrated and intelligent telecare system. IEEE Transactions on Information Technology in Biomedicine 2 (1), 1–9. Wolkorte, R., Heersema, D., Zijdewind, I., June 2015. Reduced dual-task performance in MS patients is further decreased by muscle fatigue. Neurorehabilitation and Neural Repair 29 (5), 424–435. Wright, B., 2004. Assisted Living in the United States. AARP Public Policy Institute.

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Powered Mobility Dave Long1,2, Joanne McConnell2,3, Geoff Harbach4 1 AJ M HEALTHCARE, UNI TED K I N G D O M; 2 O X F O R D U N I V E R S I T Y H O S P I TA L S N H S FOUNDATI O N TRUS T, UNI TED K I N G D O M; 3 R 8 2 , U N I T E D K I N G D O M; 4 B I R MI N G H A M CO M M UNI TY HEALTH C A R E N H S F O U N D AT I O N T R U S T, U N I T E D K I N G D O M

CHAPTER OUTLINE Introduction������������������������������������������������������������������������������������������������������������������������������������� 260 Indoor or Outdoor?�������������������������������������������������������������������������������������������������������������������� 260 Further Variations���������������������������������������������������������������������������������������������������������������������� 260 Models of Provision�������������������������������������������������������������������������������������������������������������������� 261 Assessment�������������������������������������������������������������������������������������������������������������������������������������� 261 Control Systems������������������������������������������������������������������������������������������������������������������������������ 266 Outline Operation���������������������������������������������������������������������������������������������������������������������� 266 Joysticks��������������������������������������������������������������������������������������������������������������������������������������� 266 Programming������������������������������������������������������������������������������������������������������������������������������ 268 Outputs��������������������������������������������������������������������������������������������������������������������������������������� 268 Maintenance and Reliability������������������������������������������������������������������������������������������������������ 269 Powered Wheelchair Selection������������������������������������������������������������������������������������������������������ 269 Introduction�������������������������������������������������������������������������������������������������������������������������������� 269 Seat to Ground Height��������������������������������������������������������������������������������������������������������������� 269 Drive-Only Powered Chair��������������������������������������������������������������������������������������������������������� 270 Method of Driving Access���������������������������������������������������������������������������������������������������������� 271 What Powered Functions Will Be Required?���������������������������������������������������������������������������� 271 Tilt-In-Space and Recline Functions������������������������������������������������������������������������������������������� 272 Powered Elevating Leg Rest/s���������������������������������������������������������������������������������������������������� 276 Powered Seat Height Adjustment��������������������������������������������������������������������������������������������� 277 Standing Function���������������������������������������������������������������������������������������������������������������������� 277 Drive Wheel Options������������������������������������������������������������������������������������������������������������������ 278 Comparison of Wheel Layouts With Respect to Space Requirements for Turns�������������������� 284 Further Considerations With the Home Environment������������������������������������������������������������� 286 Specific Points for Use in an Educational Setting��������������������������������������������������������������������� 286 Workplace Considerations��������������������������������������������������������������������������������������������������������� 287 Psychological Adjustment to Using a Powered Wheelchair���������������������������������������������������� 287 Summary������������������������������������������������������������������������������������������������������������������������������������������ 287 References��������������������������������������������������������������������������������������������������������������������������������������� 288 Handbook of Electronic Assistive Technology. https://doi.org/10.1016/B978-0-12-812487-1.00009-0 Copyright © 2019 Elsevier Ltd. All rights reserved.

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Introduction Powered mobility has traditionally been characterised as a wheelchair with batteries, motors, gearboxes, drive wheels and a control system. While this provides a means to define a particular type of statutory provision, it is somewhat restrictive. Manual wheelchairs may be powered by a variety of systems, including: • Simple powered add-on units comprising a single motor, a single drive wheel sitting between the rear wheels and a simple lever operated by an attendant (two wheels adjacent to each other are used to provide more traction, but still operate at the same speed). • Power-assisted (hub motor), push rim-activated wheelchairs, which amplify the effort the occupant applies to the rims (Cooper et al., 2004). • Hub motors controlled by a joystick operated by either the occupant or an attendant. • Small drive wheels applied directly to the tyres, controlled with a joystick either by the occupant or an attendant.    It is also possible to buy a manual wheelchair which converts into a powered chair by removing the large diameter rear wheels and fitting a unit to the rear of the chair, inclusive of the complete drivetrain. Scooters also provide powered mobility, albeit mainly for outdoor use, although some of the more compact versions are suitable for use indoors as long as there is sufficient space for circulation. One might also include the Segway as a means of powered mobility, although its usefulness will be defined by the person’s physical ability.

Indoor or Outdoor? Powered wheelchairs can be designed specifically for indoor use, being characterised by a compact design. In general, this will mean smaller batteries, which means a shorter range, but this is less critical indoors, of course. It will also usually mean less outright stability, the wheels being set closer together. Within the UK NHS these wheelchairs are classed as electrically powered indoor wheelchairs. Other wheelchairs are designed mainly for use indoors but also have a degree of capability outdoors (electrically powered indoor/outdoor wheelchairs), and some are mainly for outdoor use with limited capability indoors, sometimes referred to as electrically powered outdoor wheelchairs. Care should be taken in making absolute definitions because capability indoors will be defined by the indoor environment, the social context and the occupant’s ability to control the chair in a confined space.

Further Variations • Powered ‘ride-ons’ are available for very young children, designed specifically for that age group in their context with other children of a similar age (e.g., WizzyBug from Designability and Bugzi from MERU). • Powered wheelchairs designed solely for use on rough terrain outdoors can navigate ground that would be inaccessible to a wheelchair designed for use both inside and outdoors.

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• Caterpillar-tracked chairs enable even more challenging terrains to be accessed. • Gyroscopic control has been introduced to the control of powered wheelchairs to assist with straight line stability, but in a more extreme example was developed in the 1990s to enable a chair to ‘stand’ on its rear wheels (the iBot).

Models of Provision In NHS services there are often strict eligibility criteria regarding provision of powered wheelchairs. Therefore the providing service often focuses on the occupant’s ability to control the chair, and so improve their independence. However, it should also be recognised that enabling the attendant to drive could have a direct impact upon the occupant’s independence and participation (Care Act, 2014), although anecdotally its application appears to be taking time to become fully implemented. Where funding for powered mobility is based on insurance, charitable donations or private means there are fewer restrictions, which allow the patient and assessor to think more broadly about how best to meet the identified needs, and the needs both of the person and of their carers or supporters. In the United Kingdom the state provides powered wheelchairs through commissioned wheelchair services to those who have difficulty walking. Indoor-only chairs are used where the person does not have the ability to process the dangers associated with the additional hazards of the outdoor environment. They are also used where the person’s home has small doorways, turns or corridors, because the overall footprint of an indoor chair is usually smaller than that of one designed for use outdoors (as discussed earlier). Indoor-powered chairs are not provided where the person can push themselves in a manual chair. Indoor/outdoor chairs are provided where the person has difficulty walking both ­outdoors and indoors: they are not provided where the person can mobilise indoors or where they can manoeuvre themselves around (indoors or outdoors) in a manual selfpropelling chair. These are the typical rules applied to provision, but there are variations in commissioning arrangements in some areas of the country.

Assessment There is a significant level of complexity to determining which powered wheelchair will be most suitable for an individual. As such, it is critical that sufficient time be allocated to the process of assessment (Frank and De Souza, 2014). Why is this so important? Because rushed assessments mean that information might be missed and so corrections must be made later. This is both inefficient and unsatisfactory to the person who will use the wheelchair, to the assessor and to the person paying for the assessment, which could be a statutory organisation funded by taxpayers, an insurance company, charitable funds or the individual themselves.

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Another reason to allow enough clinic time is to ensure that the person is provided with a fair assessment of whether or not they are able to operate a powered wheelchair. If provision is to be declined, this could be devastating due to the potential for: • Loss of independence. • Reduced self-esteem. • Increased requirement for funded care. • Increased dependence on a partner or family member.    All of these factors could reduce the ability of the person to participate in society (World Health Organisation, 2001). In many cases it will be entirely right that provision is declined if the person is unsafe. However, this decision must only be taken when the assessor has furnished themselves with a full set of assessment data, and has had the time to carefully evaluate the full set of circumstances of the individual. Clinical assessment is not formulaic. It requires the assessor to evaluate and to synthesise the collated data and information prior to making a decision. As such, an assessment tool should be used as that alone, a tool to help. Nonetheless, a tool is important because it provides a template within which to work, and acts as an aide-memoire. Even the most experienced assessor will require a prompt from time to time. Table 9-1 includes common assessment areas and rationale. Table 9-1  Assessment Areas for Powered Mobility and Rationale Assessment Area

Rationale

Aims and expectations, including any problems currently being experienced, and related to occupation and leisure activities Current equipment and 24-hour positioning context

It is critical that these are understood right at the start of the assessment so that the person and their situation are integral to the process.

Diagnosis

Current state of health Respiratory status

Eating/drinking/swallowing

Are there other wheelchairs or forms of seating in use? Will their use change with the provision of a powered wheelchair? How much of the day is spent in the wheelchair and how much in bed? How does positioning in bed influence posture in the day? This will provide information about the prognosis for the person together with their capabilities, which will be helpful in guiding equipment selection (it will not necessarily be definitive). If the person is in particularly poor health, a rapid response may be indicated. This question may yield information to suggest provision of powered tiltin-space. Orientation of the throat/chest to the vertical is critical in these circumstances and so the need for the equipment to assist may be indicated. Points as per respiratory status; additionally: • Will the chair need to be driven underneath a table/kitchen surface? • Is there an indication for a tray? • Is there likely to be a need for a mobile arm support to be fitted to the chair (typically, but not exclusively, for people with motor neuron disease/muscular dystrophy) and, if so, what are the hardware requirements for having this fitted (Frank and De Souza, 2015)?

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Table 9-1  Assessment Areas for Powered Mobility and Rationale—cont’d Assessment Area

Rationale

Height

Where the person has long legs, consideration must be given to the distance of the footplates to the floor – a higher seat to ground height may be required. Equally, someone who is shorter may require shorter footplate drop tubes and a lower seat to ground height; this, however, may lead to the person being seated very low to the ground, which can be socially isolating, and so a seat raiser unit might be indicated. Every wheelchair has a weight capacity, which is the sum of the user’s weight and any seating system. Heavier people may require a wider track width (in respect of stability) or larger capacity batteries (to provide an acceptable driving distance). Durability of the footplates, hangers and backrest needs to be considered (e.g., people with quadriplegic cerebral palsy tend to extend at the hip and knee when they talk). Where a communication aid is used, line of vision should not be obscured. Space behind the backrest may be required when communication aid mounting systems allow the device to be swung back. Understanding a person’s visual impairment and how they compensate for it is very important. It is possible for someone to drive with very restricted vision. In some cases it will be appropriate to construct a variety of plans to cater for a range of scenarios – for example, the person might be fully independent indoors at home and in their daily settings but be fully dependent on a carer using an attendant control in unfamiliar or very busy surroundings. The importance of hearing will be dependent on the context within which the wheelchair is to be used. If busy roads are to be crossed, hearing will be more significant, but again the person may be able to compensate for a lack of hearing. A point to consider along with posture and seating generally, the ability to offload fragile tissues using tilt and recline will be an important consideration. A postural assessment will determine the impact of neurological phenomena. Some users will require a greater degree of tilt/recline to rest/function comfortably. Poor sensation can lead to significant tissue damage, e.g., in powered mobility if feet are inadequately protected, fall off the plates or get caught in doorways – the person may continue driving, oblivious to the damage they are doing to their feet. This is mostly associated with postural assessment, but an important question is whether any intervention such as surgery is imminent, because this may change the advice you give. Does medication affect the person’s functional ability during the day? Is the person taking medication for pain, and if so where do they experience pain? Does this provide an indication for tilt/recline or specialist seating? Some medication can induce drowsiness, which could be an issue for safe driving. It may be appropriate to request whether medication can be reviewed.

Weight

Communication

Vision

Hearing

Skin condition Neurological signs and symptoms

Sensation

Orthopaedic interventions, including pharmacological means Relevant medication

Continued

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Table 9-1  Assessment Areas for Powered Mobility and Rationale—cont’d Assessment Area

Rationale

Pain

Pain and discomfort are challenging to quantify but how does the person manage their pain? Does it cause them to get out of the chair earlier than they would like? Would provision of a recline mechanism in conjunction with tilt allow the person to sit out longer? Is there a requirement for a specific type of seating? This is also associated with postural assessment. How much function is present and how effective is this? What is the social context in which the person lives? What level of independence does the person have or wish to achieve? How does this impact upon the choice of equipment? This is a very important factor for provision of powered mobility. Steps, ramps that are too steep, severely sloping pavements, doorways that are too narrow, turns which are too tight, through-floor-lifts which are too small and stray pieces of furniture can all cause powered mobility to fail, so it is necessary to assess the environment in which the person lives, not just inside but outdoors too. The person may be able to/choose to walk or crawl indoors; they may be able to walk short distances outside; these must be taken into consideration. Does the person have their own mobility vehicle? Do they drive it themselves? Do they transfer to the passenger seat? Is the wheelchair/scooter to be hoisted into the boot or will it be driven up a ramp/onto a tail lift? How will it be secured? Do they use a taxi and, if so, how steep are the ramps and what head clearance is available? Is the equipment to be folded or dismantled and packed into a car boot? Does the person use public transport or fly often? Independent or manually assisted standing transfers The height of the seat and proximity of the armrests will be critical; for some, the seat depth may need to be shortened (more than normal) to allow them to position their pelvis fully back in the seat; the foot support will need to be able to be moved out of the way; a kerb climber (see section later) may need to be able to be moved out of the way or removed altogether. Sideways transfer The height of the seat will again be important but the armrest(s) will need to be swing-back or removable and the contour of the seat cushion must not be restrictive. Note that it is worth considering the efficiency of the transfer in relation to skin condition; if the person drags themselves across from one surface to another, they may be damaging the skin under the buttocks. Power-assisted standing transfer Where the person uses a standing hoist, the height of the seat will be important, as will the need for the foot support to be moved out of the way. Hoisted transfer Commonly, the pelvis hangs lower than the distal femur when the person is supported in the hoisting sling; it is therefore logical to match the seating orientation, which indicates a tilting mechanism; it is sometimes necessary to swing back or remove the foot support when using a mobile hoist. Does the wheelchair seat height need to match the loo seat height? Does the person use a slipper pan and is there access for this to be inserted and removed? Does the person use a urinal bottle and is there space for this?

General abilities Care needs/home situation

Environment

Method of mobility indoors and out Mode of transport

Transfers

Bladder and bowel management

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Table 9-1  Assessment Areas for Powered Mobility and Rationale—cont’d Assessment Area

Rationale

Personal care

How independent is the person? Do they need to be able to access a wash basin/vanity unit? Must they be able to have their hair washed from the seat (i.e., must it tilt and/or recline)? It is necessary to conduct a physical assessment of the person to determine their abilities and limitations (Chapter 3). The following critical measures are highlighted: • Can the person bend at the hip to the extent that a sitting position can be obtained (usually 90 degrees)? • Does this cause their pelvis to tip into posterior tilt? If so, this is likely to cause a loss of lumbar lordosis, an increased thoracic kyphosis, an extended neck, a ‘poked’ chin and difficulties with line of vision. It may also cause the person to slide forward, having implications for the potential development of pressure ulceration under the bony prominences of the pelvis. • Can the pelvis be positioned in neutral with respect to obliquity (one side higher than the other) and rotation (one side forward of the other)? Asymmetries in the pelvis must be either corrected or, if fixed, accommodated to provide a stable base of support to the trunk. • Can the knees be extended with the hip flexed to the position demanded by the chair foot support? If they cannot, tight hamstrings are indicated, and because these muscles run over two joints, the position of the knee will affect the position of the hip. If the hamstrings have become shortened but the feet are still placed forward of the knee, the pelvis will tend to be pulled into posterior tilt, which will have the effects listed previously and will be likely to cause the person to slide forward (Frank and De Souza, 2016). Where the person has long legs, the dictated foot position can cause a clash of foot support and castor wheel. • Can the hips be placed in a little abduction without causing rotation in the pelvis? This provides a wider, more stable base of support. • Are the shoulders level? If not, additional support to the spine may be required and, where there are bony prominences, accommodation for shape will also be needed. • Can the head attain a mid-line position or does it need additional support? Is the person able to turn their head to look around them as they are driving? • Are there restrictions to arm movement? How will this impact upon the ability of the person to manipulate the controls of the chair? • Are the ankles fixed in plantarflexion (indicating angle-adjustable footplates) or can they be positioned in neutral? Clearly, the level of physical assessment will be dictated by the person’s complexity of need, but while it is not necessary in every case to conduct a very detailed physical assessment, ascertaining that there are none of these critical measures is still vitally important. Where a full physical assessment is required, suitable facilities will also be needed (i.e., transfer equipment and a physiotherapy plinth). Crucially, sufficient time must be allowed.

Physical assessment

Continued

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Table 9-1  Assessment Areas for Powered Mobility and Rationale—cont’d Assessment Area

Rationale

Linear measurements

Linear measurements must be taken of: • Hip width: greater trochanter to greater trochanter (coronal or transverse planes). • Sacrum to within around 10 mm of the popliteal fossa (sagittal plane). • Lower leg length: popliteal fossa to heel (sagittal plane). • Shoulder height: ischial tuberosity to distal clavicle (sagittal or coronal planes). • Shoulder width: greater tubercle to greater tubercle (coronal or transverse planes). • Head height: ischial tuberosity to most superior aspect of the skull (sagittal or coronal planes). • Elbow height: with the shoulder in neutral ab/adduction and extension/ elevation, and with the elbow flexed to 90 degrees from seat surface (ischial tuberosity) to olecranon process of the ulna (sagittal plane).Allowances may be needed in the foregoing for musculature and/or excess soft tissues. It may also be helpful to measure axilla height to seat surface/ischial tuberosity in the coronal plane, if lateral trunk supports are required to aid postural alignment.

Adapted from MPD 24/7, Oxford Centre for Enablement, Oxford University Hospitals NHS Foundation Trust.

Having gathered these data, it is helpful to list the problems which can be addressed (e.g., cannot get under a table due to joystick height), together with any constraints (e.g., limitations in space at home). This will assist the assessor in clarifying with the person the aims and objectives of provision prior to making recommendations and a plan of action.

Control Systems Outline Operation Most control systems work on a ‘bus’ configuration where there is a common set of cables connecting all the different modules together. The modules all listen and contribute to the data traffic on the ‘bus’ and this is how a joystick passes its movement information to the control system, which then uses this to provide an output either to the motor control system or to the other output devices that may be on the chair (e.g., tilt actuator).

Joysticks A joystick module is the most visible part of the system and comprises the joystick itself, some sort of display to show the level of battery charge, operation and display of speed settings and the control of additional features such as tilt, rise, stand, etc.

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The vast majority of joysticks operate proportionally, that is to say small deflections induce small movements of the chair and larger deflections a proportionally larger response. The joystick can be moved in any direction, which allows easy correction of directional changes without loss of speed. Manufacturers offer a range of joystick and control modules of differing complexity to suit the needs of the person. For those who cannot use a standard joystick, there are a variety of options: • Alternative joysticks: •  Heavy duty, but tend to be simple switched movements rather than proportional. •  Tray mount, where the arms require full support or where a mid-line position is required for postural reasons. •  Light touch, where the person’s primary issue is muscle weakness. •  Mini-joystick, where the person can make only very small movements. • Switched input: •  An array of simple on/off switches (between one and five). •  A switch or switches in combination with a clock face scanner (the user hits the switch when the clock face is lit in the direction of intended travel). •  Sip/puff tubes which the person holds in their mouth. The four directions of movement are commonly provided by short sip/long sip/short puff/long puff.    It should be noted that switched input is only used where proportional control is not an option because the client does not have sufficient manual dexterity to control a proportional joystick effectively with their hands, or sufficient range of movement in their head to use a chin joystick, or may have no hands at all. In which case other body parts can suffice. For example head, arms, knees and feet. It is quite possible to approximate proportional driving with an array of switches that can control and modify the direction of the chair in real time. Driving with a scanning direction controller using switches can be slow and tedious. The small directional changes used with a joystick to correct for undulations in the floor/ground or for the pile of carpet indoors are corrected much more slowly with switched input – one must stop, turn left/right slightly and then carry on ‘straight’ until a further directional correction becomes necessary; this results in repeated stops and slow progress. More recent systems do however allow a degree of directional adjustment “on the fly” but these become increasingly more complex to set up for the wheelchair service, and more complex to use by the driver of the chair. You could for example have someone driving with a scanner using a foot switch as the main input, and then have two head switches for left and right “Nudge”. With complex systems such as this it becomes even more important that the technical teams putting these systems together are familiar with good electronics engineering practice, as a number of connectors will be needed to allow removal of the headrest and footplates etc. And these components must be robust and reliable to cope with heavy repeated usage. In addition, to possible misuse they receive when out in the real world. That being said, if it is the only option for independent driving, there is still significant potential benefit. This is not an exhaustive list of control system inputs and the market is developing constantly, so other options will be available.

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Programming There is a plethora of parameters which can be changed to suit the needs of the individual, their circumstances and the surrounding environment. These include: • Maximum/minimum forward/reverse speeds. • Forward/reverse acceleration/deceleration. • Maximum/minimum turning speed. • Turning acceleration/deceleration.    With thicker carpets, the wheelchair may struggle to turn with the speed set to a minimum. At the same time, too much acceleration, top speed and deceleration make for a very jerky ride unless the user is highly proficient and dexterous in their use of the joystick. More advanced settings include veer control and the ability to change motor load responses, among other things. Some controls have a simple dial to alter maximum and minimum speed settings, but more advanced systems offer a series of profiles which can be individually tailored to meet each person’s needs by adjustment of the foregoing parameters. For example, different profiles may be required in different environments. Where a secondary joystick is fitted, as would be the case for an attendant, one of the drive profiles may be assigned for this purpose. Secondary joysticks for use by an attendant are fitted where the occupant might struggle (e.g., fatigue) where driving access is via a switch/switches, or where driving ability is marginal and there are multiple hazards such as rough ground, large crowds, etc. A basic level of programming can be achieved using a handheld programmer. These do not give access to the more detailed menus by the PC-based systems and one must record manually the settings used. With a PC-based programmer, a file is created that contains all the relevant data, which can be easily stored and flashed across where control system components have been replaced due to failure.

Outputs It is possible to control a variety of devices from the wheelchair control system, including: • Seating actuators, for changing: •  Tilt angle of the seating. •  Recline angle of the backrest. •  Elevation of the leg rests. •  Seat riser. •  Standing/lie-down function. • Lighting modules: headlights, sidelights, indicators. • Environmental control systems using infrared, such as a television or window openers, so long as they are controlled by infrared. • PCs, tablets and smartphones using Bluetooth (i.e., a tablet can also be used as a communication aid).   

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It is also possible to control multiple devices from a single switch (integrated access, Chapter 10) where such an interface is available. Control is achieved by using a timed response from the user to select menu and submenu options. Programming is the key to success taking into account what is most effective for the user and their preferences.

Maintenance and Reliability The position of the access method is an important factor to consider. For example, if a joystick is side mounted and reasonably well protected from passing obstructions, there should be few issues with reliability. Conversely, where a joystick or switches are tray mounted and being taken on/off repeatedly, there is a high chance of failure unless the tray is removed and stowed carefully and the cables are treated with respect each and every time. Factoring in adjustable seating components also adds to the complexity as the cables must have sufficient ‘spare’ length to allow the articulation, but the ‘spare’ length must be safely stowed at all times.

Powered Wheelchair Selection Introduction When selecting a powered wheelchair there are many important factors to be considered to ensure the most suitable piece of equipment is chosen. Additionally, there has never been such a wide choice of options available, and so without experience and guidance it can be a daunting experience for an individual selecting the most appropriate chair for their needs. Many people start this process on the internet or at a trade show, of which there are many. It is usually helpful to trial a variety of chairs because they will each offer differences in specification and drive characteristics. It can be just as difficult to choose a powered wheelchair as a car, and can also be just as costly, so it is vital to find a trustworthy manufacturer or dealer to assist with this highly specialist area if the chair is to be purchased privately. If the individual meets the criteria for provision from a statutory service, it is important for the individual to make a comprehensive list of their specific needs, even if all of these options are not available through the statutory provider. In the United Kingdom, the wheelchair services’ voucher/personal wheelchair budget schemes may allow the individual to specify additional features.

Seat to Ground Height Along with the usual measurements of seat width and seat depth, the height of the seat to the ground is also one of the first pieces of information that should be gathered, because it will guide the initial selection process. The main considerations are: • Standing transfer – lower leg length. • Sideways transfer – height of adjacent surface.

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• Lifted transfer – person lifting may wish the seat to be higher up. • Lower leg length in relation to footplate height from the ground(i.e., a tall person may find that the footplates are too close to the ground to allow passage over undulating or rough terrain). • Ability of the chair to fit under a surface (i.e., dining table, desk, kitchen worktop/ counter, etc.). • Where specialist seating is to be used, a lower wheelchair seat height may be desirable because the bulk of the seat may push the person higher than normal. • Social interaction – if a seat riser is not fitted, the person may prefer to be set at a higher position. • Access into and within a vehicle – the height of the aperture of the access door and height available within the vehicle may govern seat height. • Where the occupant has tight hamstrings (with the hips flexed, knees are unable to straighten to any less than around 90 degrees of flexion) the feet are set back and are likely to clash with the castor wheels, meaning that the footplates may have to be positioned above them, which will influence seat height.    Dimensional information can usually be found in manufacturers’ product literature, but with the number of variations in specification that are available, it can become necessary to perform a physical check on a demonstration model. Additionally, the type and shape of the seat cushion coupled with the design of the chair seat frame will need to be considered because it is possible to ‘sink’ a cushion into some frames, whereas this cannot be achieved with a flat seat pan. It should be remembered that adding powered functions will usually add to seat height due to the additional mechanical bulk.

Drive-Only Powered Chair Many powered chairs still offer a simple drive-only capability, and for a large proportion of wheelchair users this will be suitable and acceptable. If it is to be a first powered chair to allow greater independence outdoors and to enable coverage of longer distances than is practical or realistic in a manual chair, then a drive-only chair will often be the most appropriate based on cost and ease of use. These chairs will benefit someone who has reached the stage where a manual chair, and maybe a scooter, are no longer viable options. The person will: • Usually be able to perform an independent transfer. • Be able to drive the chair with good control via a standard joystick. • Likely be someone who is not a full-time wheelchair user, or might be someone who uses a manual chair and a powered chair for different activities, choosing whichever is the more appropriate to the task in hand. • Be less likely to have postural needs and will be capable of sitting without support in an upright position for the duration of the time they need to use the chair.

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• Most likely not need to travel seated in the chair in a vehicle, and so will not need to consider a chair that is suitable for occupied use in transportation. • Typically, transfer to an alternative seat at their chosen destination (e.g., their place of work or a leisure activity).

Method of Driving Access The joystick controller can be mounted on the left or right; a swing-away mounting can also be selected to allow the individual to access a table or work surface. Whichever option is chosen, adjustment is usually required to enable the person to use the controller with least difficulty. This will entail an assessment of hand function and driving capability. It is more difficult than it may first appear. In some cases a standard controller will be unsuitable and other options should be explored. It is important to note that while some people are able to drive a powered chair instinctively, it is found to be much more difficult by others, often regardless of previous vehicular driving experience. As such, it is imperative that adequate time is given to the person to allow them to learn what for many will be a completely new skill (Nilsson and Durkin, 2014), particularly for children, taking into account their developmental needs. This not only may take more than one appointment, it also requires engagement with others such as family, carers and schools. A powered chair may be the only means of independent mobility available to the person; without it they may become entirely dependent on others and may have longer-term clinical, psychological and cost implications. There are a multitude of driving access methods available and these should be explored fully.

What Powered Functions Will Be Required? The term ‘powered functions’ relates to the different articulations a chair can achieve. Not all of these features are essential and not all chairs can perform every one. While there will be clinical reasons for specifying certain functions, some will be selected to meet lifestyle and independence needs, which can be just as important for the individual. The following list shows the powered functions which are available. Within some limits they can be used in combination and will often complement each other. A more advanced control system will be required when a higher number of features are specified: • Tilt-in-space (i.e., the seat, back and leg supports move as one unit, maintaining hip and knee flexion angles). • Recline (i.e., only the back support moves, which opens the hip flexion/extension angle). • Elevating leg supports (i.e., the knee is extended). • Seat riser/elevator (some chairs focus on gaining height, whereas others are designed to lower the person to floor level, usually a small child to allow them to interact with their peers; a very small number of chairs can achieve both).

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• Stand-up (i.e., moves the individual from sitting into standing, always in combination with an anterior knee/lower leg brace, and often with other postural supports, depending on the level of ability). • Lie-down (although recline opens the hip angle, few chairs facilitate a fully supine position; lie-down and stand-up are typically achieved in the same chair).

Tilt-In-Space and Recline Functions It is important to be clear on the meanings of these terms as they are often confused with each other. Tilt (Fig. 9-1A) is the ability of the seat, back and leg supports to move as one unit, which maintains the hip and knee flexion angles. Recline (Fig. 9-1B) refers only to movement of the back support (i.e., opening and closing the hip flexion/extension angle). The effects of these two functions are distinct, but can be complementary if clearly understood and applied to the appropriate set of circumstances. The benefits and limitations of tilt and recline are described in more detail in the following sections. Some of these overlap because one implication often relates directly to/is influenced by the other: • Change in position: Many wheelchair users who require a powered chair are not able to change their posture independently and so will be reliant upon the technology of powered articulations such as tilt-in-space and recline to make adjustments to their position according to function, social setting, pain and discomfort, where even slight alterations to position can be beneficial: (A)

(B)

FIGURE 9-1  (A) Tilt-in-space. (B) Recline.

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•  Recline alone may be helpful in opening the hips to relieve internal abdominal pressure or to help manage a painful hip, but without a change in tilt is likely to lead to the person sliding down in the seat; this is classically where ‘bed sores’ are acquired and is best avoided in most circumstances. •  Used in conjunction with tilt, however, recline can be very effective at providing a rest position, which may improve sitting tolerance and allow the person to remain in their wheelchair for longer. This may enable them to travel and to take longer trips away from home, and may reduce the amount of care that would otherwise be required, for example, in assisting the person back to bed for a rest. •  Where a wheelchair seat is comfortable and allows for a resting position, there can be an increase in social interaction and quality of life. • Pressure distribution: In a recumbent position the spine has greater contact with the back support because the orientation of the body segments relative to the effect of gravity is altered. In upright sitting, gravity can lead to increased kyphosis which results in the trunk pulling away from the back support, whereas when the trunk is angled backward, gravity applies a force anteriorly to the chest, thus pushing the trunk into the support, and starts to offload the pelvic bones; however, the effectiveness of tilt and recline in reducing point loading is less easily understood – there are complex and confounding factors which come into play. RESNA (2015) states that pressure relief can become effective when tilt is used in combination with recline. Points to consider are: •  Past history of pressure ulceration. •  Length of time spent in wheelchair. •  Length of time spent in one position in wheelchair. •  Amount of tilt available – it is sometimes suggested that an angle of at least 65 degrees is required to achieve offloading of the pelvic bones. Not many chairs can offer this much tilt and it is a dysfunctional position which can only really be used as a resting position (RESNA, 2015). •  Functional requirements demanding use of an upright position may limit the amount of time which can be spent tilted and reclined. •  Orientation of the pelvis (obliquity, rotation and tilt), shape of the spine and limitations in movement of the hips will all impact upon how the body is loaded. • Postural control: The ability to alter the positions of the body segments relative to gravity not only helps with offloading pressure, but also assists with stabilising the person’s posture, particularly the trunk, shoulders and head, enabling them to maintain a comfortable and optimal position throughout the day (Lacoste et al., 2003): •  Less effort/energy is required to sit in a tilted position (Pope, 2007), i.e., it is more restful and akin to the difference between sitting at a dining table and sitting on a sofa – each has its functional purpose but it is usually the latter on which one may occasionally fall asleep.

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•  There may be a reduced need for additional supports if the tilt and recline is used in increments when the person starts to lose position. •  Tilt/recline works in conjunction with the seating, including pressure distributing cushions, to achieve the same aims; this may help defer the deterioration of a scoliosis, although there is little evidence to support this claim (ethically, one could not assign subjects to a control group). •  May help to reduce a flexible kyphosis, which may in turn reduce pressure on internal organs. •  Provides a counter-posture (Pope, 2007) to upright sitting, that is to say in changing the orientation of the trunk relative to gravity, the reverse forces are applied compared to an upright sitting position. •  If the arms can be supported on a tray or bean bag, this takes further load off the shoulders and spine, which may provide further improvement to alignment. •  Using a little tilt when driving outdoors, and in particular when driving down slopes, can make the person feel more secure and less concerned about tipping forward. • Relief of discomfort from constipation and internal pressure on the abdomen: It is not uncommon for people who are unable to stand and walk to have problems with constipation (Freeman et al., 2016), which is often reflected in the proportion of people on medication for this condition. The use of a reclined position, where hip flexion is reduced, may also relieve pressure on the abdomen, which may improve comfort and sitting tolerance. Consider how people push back their chair from the table after a meal so they can slide themselves forward. They may also loosen their belt; it is a lot to ask of someone to sit in the same position all day. • Hoisting: Since hoist slings tend to lift the person in a tilted orientation for the purposes of stability, a tilted position in the wheelchair is very useful as the person can be positioned with their pelvis to the back of the seat; this reduces the need for further correction of posture and the associated manual handling risks to carers. • Toileting: •  Use of a reclined position can help when managing toileting in a chair because it is easier to position a urinal bottle when the hip angle is more open. •  It is usually necessary to move into an upright position to use a urinal bottle, and a large angle of tilt can lead to problems with catheter drainage. • Lying orientation: •  When used with elevating leg rests, a chair able to offer a large amount of recline can create a lying or semi-lying position, either for resting during the day or to offer a position for changing clothes. •  If an individual uses incontinence pads then the lying position could act as a changing bed when out and about. • Manual recline: Rather than a powered actuator, a manual mechanism is provided which is operated typically either by a finger lever and Bowden cable (operated by the occupant or attendant, depending on where it is sited) or by a hand wheel; it is fitted on some powered chairs as standard and can be sufficient if the feature is seldom used, perhaps where tilt is used more often. This will usually cost less than a powered recline.

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• Types of tilting mechanism: There are different types of tilt-in-space available. To determine which is the most suitable, the first question is how much tilt is required. Some individuals will need a large amount for true pressure relief and to assist with their management of posture within the chair, while others may only require a little tilt to stabilise their position and to help them rest in the daytime. The second question is how much tilt will be required in the future – with some conditions, typically motor neuron disease, deterioration can be foreseen and so it is advisable to build in additional features, such as tilt, from the start, thereby future-proofing the chair. Fitting these at a later stage is usually financially costly (parts and labour).    There are two prevalent mechanical designs of tilt-in-space mechanisms: 1. Pivot tilt has a single pivot about which the seat tilts. This tends to be at the back and is now less frequently used. The stability of the chair becomes impaired with larger amounts of tilt because the person’s weight is transferred backward as the mechanism moves through its arc. As a result, it tends to offer less of a range of tilt, typically only 15–25 degrees; this will be sufficient for some people but not all. 2. ‘Centre of gravity’ tilt or ‘floating’ tilt tends to be offered by the more advanced chairs/seating systems and usually goes hand in hand with a greater degree of tilt. As the seating is tilted it is drawn forward concurrently, thereby maintaining the centre of gravity very close to its position when the chair is upright; this is achieved by using four pivots and two link arms each side, which allows the chair to move within its own chassis footprint and means that the chair remains stable (largely). It can have a shorter overall length as the tilt is articulated within the frame, but the weight is kept central to the chair. a.  Disadvantages of a tilting system: i.  The increased number of mechanical components can add weight but with a powered chair this is less of an issue. ii.  Tilt generally adds cost and the upcharge can vary widely. iii.  Some tilting chairs are longer than those without the feature, which may have implications for access around the home, although those with centre of gravity shift are less affected. iv.  Individuals with intellectual disabilities sometimes struggle to understand the concept of a tilting system, and so may struggle to use it effectively. The person can be respectfully encouraged to use the feature but it cannot be enforced where the person has capacity to make their own decisions. v.  In some situations people are left in a tilted position where ideally they should be in a more upright posture (e.g., to complete a functional task). b.  Transportation: i.  It can be challenging to manoeuvre a bulky powered chair up a ramp into a vehicle, either for an occupant or an attendant. ii.  The additional height of some powered chairs can make car door apertures and inner roof heights challenging.

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iii.  Manoeuvring inside the confines of a vehicle can be difficult, particularly for an attendant who will often be stooped where the available height is restricted. iv.  Some chairs can be hoisted into the empty boot; this may mean that the backrest must detach. v.  The testing standard for a tilting wheelchair in transportation states that the chair must not be positioned with the seat rails inclined at more than 30 degrees to the horizontal (ISO, 2008), but many manufacturers choose to test in the upright position (seat rails horizontal), presumably because this reduces the chance of mechanical/test failure. Technically, this means that the chair should not be used in a tilted position when in transport. However, if someone has need of tilt for postural reasons (of all the places that they are likely to require it, travel is surely one of the top priorities), a risk assessment may be completed to assess whether the risk of injury from failure of the chair in the tilted position is outweighed by the risks of the chair being in the upright position and the effect of this on the person’s posture and of their consequent inability to be aligned with the vehicle occupant restraint. A guide to transportation has been written by an international panel and is published on the Posture and Mobility Group website.1

Powered Elevating Leg Rest/s Many wheelchair users find that being able to independently elevate their legs throughout the day is a real benefit and they can stay in their chair much longer as a result. Giving their legs a stretch can help manage pain in the knee and ankle joints, and in some cases can help reduce oedema in the lower legs and ankles. Use of elevating leg rests may reduce the risk of the development of contractures in the knees, but a postural assessment must first be completed to establish whether the person has sufficient joint range. In particular, the amount of knee extension available with the hips flexed must be clearly understood, because if there is insufficient range the pelvis will1 be pulled into posterior tilt, the person may start to slide forward and the trunk will tend to adopt a slumped position (Pope, 2007). As such, it is not advisable to use elevating leg rests to place these muscles on stretch. Elevating the lower legs may change the pressure distribution through the feet, which might be helpful for users with a history of pressure issues in that area. Some chairs will offer manual elevating leg supports that are less expensive and do not use one of the powered options on the control actuator (note that some control systems will only be capable of offering two powered functions, so if the person has already chosen powered tilt and powered recline, then it would not be possible to select a third power function without also changing the control system, which might be costly). 1 www.pmguk.co.uk/resources/best-practice-guidelines.

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Powered Seat Height Adjustment There will be many potential lifestyle and social benefits to the provision of a seat height adjustment, both in and out of the home. As stated earlier, most chairs with this feature focus on increasing elevation away from the floor, but one or two have the capability to descend in height, which is particularly suitable for young children needing to be among their peers who might be playing on the floor or sitting on a mat in class. The following benefits may be derived: 1. Increased access to differing environments. 2. Reduction in the need for housing adaptions. 3. Improved social interaction with peers as users can get closer to eye level, which may result in empowerment and greater independence. 4. Compensation for weak arms in lifting/moving items. 5. Aids a standing transfer with some conditions (e.g., Becker muscular dystrophy, where the person does not have the strength to lift their weight from sitting to standing). When a seat is raised to an optimal height the person is able to slide forward and drop down with legs already extended; this can significantly increase independence and reduces the needs of other equipment for transfers, such as a hoist (4th International Interdisciplinary Conference, 2010).    The following considerations should be made when selecting this feature: 1. Increased cost (usually). 2. Increased weight (although this is less significant for a powered chair). 3. Increased seat height due to additional mechanism which, while being beneficial to some, may hinder others. 4. Risk of entrapment to younger children (fingers and limbs).

Standing Function Chairs with a standing function have the potential to provide many physical, social and psychological benefits to the user but they can be bulky and heavy, which can cause problems both environmentally and for choosing a suitable vehicle. Some ramps and smaller through-floor lifts have weight restrictions, which may impose a barrier. Seeking informed and impartial advice prior to purchase is essential as chairs can vary significantly in specification and operation, despite what the literature might suggest. The bald fact of the significant price increase over the majority of nonstanding chairs is a barrier to ownership for many people. However, the following benefits may be derived: 1. The person can stand spontaneously (usually) and frequently through the day, to fit in with their schedule. 2. Some chairs offer sit-to-stand whereas others provide lie-to-stand; this choice will be determined by the circumstances and physical condition of the person.

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3. Standing during the day can be beneficial for bowel and bladder function (Dunn et al., 1998); it can help manage constipation (Shields and Dudley-Javoroski, 2005) and urinary tract infections (RESNA, 2013) that are associated with long periods of sitting. 4. Standing might be able to help maintain range of movement and reduce stiffness and pain in hips, knees and ankles, although the evidence for this is sparse. 5. At school, college and in the workplace, an individual who can stand independently throughout the day can lead a far more inclusive and independent life. In some cases, organisations such as Access to Work will look to find a chair with a standing function to enable the individual to be able to continue working. Education services will also consider contributing funds toward this type of chair to maximise the student’s potential within the school or college. 6. The need for other pieces of therapeutic equipment, such as standing frames, may be reduced, as might the amount of care/support needed to look after an individual. 7. The shape of the anatomy changes in the transition from sitting to standing, particularly around the buttocks; this can result in the seating supports needing to be reduced in size to facilitate a stand, but in so doing may pose too great a compromise for supported sitting. 8. Standing can only take place if there is sufficient hip and knee extension, range in the ankles, feet having a shape able to bear weight and if the pelvis, trunk, shoulders and head can be positioned in reasonable alignment. As such, it is critical that a postural assessment be undertaken prior to provision of a standing chair. 9. Finally, standing should only be pursued if the person is comfortable, functional and motivated to stand. Therapists and parents/carers should take care that in encouraging use of a standing position, they are not promoting it to the detriment of the person. If standing is not appropriate, it might be possible to achieve physical management and the enabling of functional tasks by other means.

Drive Wheel Options There are broadly three drive wheel options, or wheel layouts, to consider when obtaining a powered wheelchair. Which is the most appropriate for an individual’s needs? Here we discuss the pros and cons of each.

Rear Wheel Drive Historically, rear wheel drive (Fig. 9-2) was the most commonly selected option. It tends to provide a directionally stable drive outdoors, which can make the user feel more in control of the chair and more secure in their own abilities. It is also the closest match to the wheel layout of a car, which might be helpful where the person is/was a car driver. Rear wheel drive chairs are sometimes less suited to very small home environments because many (but certainly not all) take up more space to turn than other wheel configurations. When driving up ramps into a vehicle, this configuration tends to be the easiest to operate, partly because of the directional stability mentioned earlier, but particularly if the ramp is steep because there is less tendency for the drive wheels to become ‘beached’, as

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FIGURE 9-2  Rear wheel drive.

might be the case with a mid-wheel drive chair. The exception to this is where antitipping wheels are fitted close to the ground, in which case the problem may still arise. Some manufacturers offer a castor lock function. This is a simple addition where a pin attached to the frame drops into a receiving hole located on the top of the castor fork (or similar arrangement) to lock the castor in a forward position; this prevents the castor swivelling, which can be helpful when: • Driving up a ramp. • Reversing out of a vehicle with a dropped/lowered floor: the dropped section does not cover the full width of the vehicle, and can be narrow, meaning that the castor wheels are prone to catch or jam against the sides of the lowered section when the castor stems attempt to turn. • Driving into and out of a width-restricted through-floor lift. • Driving down a narrow alley/passage way.    Note that a castor lock does not negate directional change entirely; left/right inputs from the joystick will still have some influence, although limited. A failure to place a sufficient proportion of the weight of the person and the seating system over the drive wheels, (i.e., placing the weight away from the castor wheels) can lead to a number of problems, some of which are more serious than others: • High rate of wear on the castor wheel tyres, their forks and stem bearings. • Difficulty making sharp turns at slow speed caused by the resistance of the castor stem to spin due to the load under which it is attempting to operate. • Loss of traction through the drive wheels: •  Can cause wheel spinning, especially when making tight turns on a smooth/shiny surface. •  When traversing a cambered pavement, particularly one sloping to a drop kerb and particularly in the wet/damp. Loss of traction to the drive wheel at the top of the slope means that a significantly reduced braking effect is applied, which can result in the wheelchair turning down the slope and possibly into the road, regardless of any corrective inputs applied through the joystick. This has clear safety implications, and while it does not mean that rear wheel drive chairs are inherently unsafe, it does place responsibility on the manufacturer and prescriber to ensure that weight distribution across the front and back axles is appropriate.   

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As an observation, it is noted that some wheelchair manufacturers have responded to these problems, not by moving the centre of mass backward and unloading the castor wheels, but by making the castor wheels/forks/stem bearings sturdier. This does not address the root cause and may, ironically, reinforce the problem in some situations by forcing seating suppliers to push the person even further forward because, with the feet tucked back due to tight hamstrings, as is so often the case, they are more likely to clash with the castors if the wheels are larger. A kerb climber (Fig. 9-3) can usually be added to lift the front castor wheels when ascending a footpath from a road. One is needed where the axle centre of the castor wheel is below or only fractionally above the top surface of the kerb, or in other words, simply driving the chair at the kerb will most likely result in a dead stop. A kerb climber can help in these situations; however: • In general only fairly low kerbs can be climbed, so it is best to find a dropped kerb where possible. • Some individuals struggle to master the skill of kerb climbing because one must be aligned to hit the kerb square on and have the commitment to keep the joystick (or whatever access method is being used) pressed forward until the rear wheels are on the pavement. It can also be an unpleasant experience, perhaps most for those with weak trunk and neck muscles, or for those suffering with pain exacerbated by movement. It is important to note that a kerb climber can also get in the way of standing transfers, as many manufacturers do not have the option to easily remove the kerb climber; some, however, provide a ‘park’ position, which tucks the climber foot back out of the way.   

Mid-Wheel Drive Mid-wheel drive chairs generally (Fig. 9-4) offer a greater degree of manoeuvrability than their rear wheel drive counterparts. They can be particularly effective where a wheelchair is to be used in an indoor environment where space is more limited. While they will turn 180 degrees about their own centre point, some can be very long end to end due to having three sets of wheels. In some instances a compact rear wheel drive chair may actually be shorter; this highlights the importance of extensive trialling in whatever environment is intended. The three axles will articulate over rough ground, but this is sometimes felt as a rocking motion, which can be unpleasant for the occupant. The chair can end up ‘beaching’ when driving onto vehicle access ramps, as mentioned previously, particularly if the ramp is steep. The additional length can be too great to allow access to some of the smaller through-floor lifts. The overall weight of some of the larger mid-wheel drive chairs can be considerable, which can cause problems where lifts, ramps and vehicle tie-down systems are not weight rated with sufficient capacity. There do not tend to be any problems with excess loading of castor wheels, as opposed to the situation with rear wheel drive chairs. Dependent upon the design of the chair, when the seat frame is adjusted for minimum depth (as is commonly the case for children), the backrest can end up in front of the drive

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(A)

(B)

(C)

FIGURE 9-3  Kerb climber. (A) Chair approaches kerb with climber in active position. (B) Kerb climber foot contacts corner of kerbstone, and because its pivot is located at a reasonable height above the top of the kerb, allows the wheelchair to keep moving forward while simultaneously lifting the front of the chair to clear the kerb. (C) Kerb climber swings backward, lifting the castor wheels from the ground up onto the pavement.

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(D)

(E)

FIGURE 9-3, cont’d  (D) The gas strut in the climber forces the foot forward once the castor wheel ‘touches down’ and traction of the foot with the ground is released; momentum must be maintained to allow the rear wheels to climb the kerb, otherwise they too may be stopped by the kerb. (E) Climb complete; kerb climber passively reset so it is ready for the next obstacle.

FIGURE 9-4  Mid wheel drive.

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wheel centre, effectively making the chair rear wheel drive with a long, unnecessary and unhelpful extension at the rear, in which case a compact rear wheel drive chair might be more suitable. Some mid-wheel drive chairs offer a very narrow overall width, which is really helpful for access to a small environment; this will be highly appropriate in many cases but there are two considerations: • Maximal lateral stability (as opposed to that defined by the testing standards) will be reduced due to the reduced track width (the distance across the chair between the drive wheels). This will only cause a problem if the chair is used over very rough ground and/or if the person has a wide seat width and/or high body weight, and/or is positioned with an increased seat height. • The batteries may be smaller than those fitted to wider chairs, which will reduce the available driving distance. Again, this will not cause a problem in many cases but where the person drives a considerable distance every day, such as for commuting to work, battery capacity will be more critical.    Kerb climbing is achieved by articulation of the front pair of castor wheel arms. The height which can be climbed may be limited in some mid-wheel drive chairs compared to most rear drive chairs with a kerb climber. Therefore there is a need to decide on the importance of the feature, study the manufacturers’ specifications and, most importantly, have the person try the chair for themselves in the environment in which it will be used most often.

Front Wheel Drive Front wheel drive chairs (Fig. 9-5) are still very popular with some users but lost some popularity when mid-wheel drive chairs became more available and affordable. They can offer a very good drive option for outdoors on more challenging terrain but are more difficult to drive up a kerb, which must be approached with careful judgement as to its height because the chair can ‘bounce’ off the face of the kerb if it is too high, which may throw the occupant forward or even out of the chair. If the kerb is to be tackled, it must be done so with commitment and a moderate amount of speed with which to carry the chair up the obstruction with its momentum.

FIGURE 9-5  Front wheel drive.

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Front drive chairs have less directional stability than rear wheel drive; it can be difficult to avoid ‘fishtailing’ when attempting to drive in a straight line, although with the advent of gyroscopic assistance the effect is reduced. There does not tend to be any problem with excess loading of castor wheels, as opposed to the situation with rear wheel drive chairs. The fact that the drive wheels are at the front enables the person driving to turn much more tightly around a sharp corner. The flip side is that the back of the chair swings round in a full arc so the person must have the insight to allow for this, not only in terms of the physical restrictions of the building, but with regard to people who might be in the vicinity. These can be an effective solution for particularly heavy people where the centre of mass of the occupant is pushed forward. Front drive chairs do not have problems with ‘beaching’ when driving onto steep vehicle access ramps, as compared to mid- and some rear drive chairs. The overall weight of some of the larger front wheel drive chairs can be considerable, which can cause problems with some lifts, ramps and vehicle tie-down systems in terms of the weight rating. One particular difficulty associated with front drive chairs is that if the person stops with the side of the chair up against a wall, they cannot drive forward to get away from the wall – a reversing manoeuvre is required. This is the same to some extent with mid-drive chairs although the castor wheels tend to be set inboard of the drive wheels, which gives room to turn against a wall with the rear wheels while driving forward.

Comparison of Wheel Layouts With Respect to Space Requirements for Turns Historically, powered wheelchairs were considered less manoeuvrable than manual chairs. Since they were bulky and the control systems less advanced, they required more circulation space, but this is no longer always the case with the products available today. A person with upper limb weakness may gain more independence in the home by using a compact powered wheelchair than struggling to manually self-propel (Harpin, 2003). The technological advances of the past 15 years emphasise this point all the more. In daily manoeuvres it is rare that a wheelchair user will perform a 360-degree turn, but they are likely to revolve through 180 degrees frequently. This makes the width of the turning circle similar across the three wheel layouts (Fig. 9-6), but the depth of the turning circle is still greater for front and rear drive chairs, thus the importance of assessing the home environment and the driving habits of the person are underlined once again. A very common manoeuvre will be the 90-degree turn, so the wheelchair’s ability in this regard will be vital and far more important than the 360-degree turn. Fig. 9-7 illustrates how the drive wheel configurations are broadly comparable for the 90-degree turn, with perhaps the front drive chair having the widest turning circle and the rear drive being

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360° turn

180° turn

FIGURE 9-6  Wheel layout and turning (360 and 180 degrees). FRW, front wheel drive; MWD, mid-wheel drive; RWD, rear wheel drive.

FIGURE 9-7  Wheel layout and turning 90 degrees. FRW, front wheel drive; MWD, mid-wheel drive; RWD, rear wheel drive.

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the most compact, so it may be unwise to assume that a mid-drive chair will be the most space efficient in all scenarios. Despite what marketing material might suggest, this point illustrates again how a physical trial of a chair is so important in making a choice.

Further Considerations With the Home Environment As has been discussed, it can be advisable to carry out assessments for powered chairs in the home environment before making a decision as to which is the optimal model. The following points should be considered: 1. If the chair is not going to be used in the home, where will it be stored and charged? 2. Does the chair have the option of a swing-aside controller/joystick? This is a very useful feature for someone who will remain in their wheelchair most of the time in the home as they can then access tables and desks by swinging the joystick aside to get closer to the table for activities such as eating a meal. 3. Does the chair fit into the through-floor lift and is it under the weight limit (including the occupant)?

Specific Points for Use in an Educational Setting 1. Risk assessment will be necessary for the safety of the individual using the chair but also for the other pupils using the same environment. All schools will have a special needs coordinator and an elected special needs governor who should have the necessary procedures in place regarding access into/out of the school, storage and charging. 2. Some older schools were not built with wheelchair users in mind and may require a great deal of adaptions to make them accessible; in some cases it may not be economically viable. 3. A tray that fits onto the wheelchair may be beneficial and practical when a pupil moves to different classes in the day, which is more of an issue in secondary schools where multiple classrooms are accessed. However, while trays are often requested for function, they usually have a postural benefit in that the weight of the arms is taken off the shoulder girdle, thereby reducing the load on the spine. In some very practical lessons requiring a larger working surface, however, it may be more useful to use a height-adjustable standalone table but this will not be possible in all environments due to lack of space and speed of getting from room to room. 4. The provision of powered functions, especially a seat riser (social interaction) and possibly a standing function (to avoid the time taken to transfer to a standing frame), may be more necessary within the educational environment and particularly so in mainstream school. Often education services or charitable sources will be open to joint funding a chair or function of a chair, so that the child becomes as integrated and as independent as possible.

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5. A swing-aside controller can make a significant difference in an educational setting, and may negate the need for a tray.

Workplace Considerations Use in the workplace has many of the considerations described previously for the school/college environment. In the United Kingdom, employers have a duty under the Equality Act (2010) to ensure that employees with a disability have access equal to that of their able-bodied peers. This means that the work environment must be made wheelchair accessible where access is required, so the usual environmental assessment will need to be conducted by the person assessing the wheelchair. Again in the United Kingdom, the Access to Work2 scheme may offer assistance with purchase costs of a wheelchair. A powered seat elevator may be required to allow access to different height work surfaces if these are required in the person’s daily work roles. It may be that the workplace has a separate powered chair to the home environment. It may also be that the employee manages with a manual chair at home, but to be able to perform their work role they need a powered chair.

Psychological Adjustment to Using a Powered Wheelchair The transition into a powered chair can be difficult for many individuals who may see it as confirmation of a higher level of disability, and so it is often delayed for as long as possible. Practically, it could make the individual far more independent. It can be costly and take significant time and effort to get to the final provision of the chair, particularly where long waiting lists exist in statutory services. Individuals sometimes feel that a powered chair is a significant burden on the family because it may limit choices of destinations and often requires alternative transport to be sought. Therefore it is important to discuss fully the pros and cons of using a powered wheelchair and support the individuals through the process.

Summary Provision of powered mobility requires comprehensive assessment and analysis of multifactorial and complex data. Many conflicting requirements can arise and must be prioritised with the person to determine the most suitable piece of equipment. A wide variety is available on the market and can be sought from a number of providers, including private purchase or charities. Having a powered wheelchair could mean increasing one’s ­independence and ability to participate in society if time is given to explore all the relevant options. 2 https://www.gov.uk/access-to-work.

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References Care Act, 2014. UK Government. Cooper, R.A., Cooper, R., Schmeler, M., Boninger, M., 2004. Push for power rehab management. 17 (3), 32–36. Dunn, R.B., Walter, J.S., Lucero, Y., Weaver, F., Langbein, E., Fehr, L., Johnson, P., Riedy, L., 1998. Follow-up assessment of standing mobility device users. Assistive Technology 10 (2), 84–93. Equality Act, 2010. UK Government. Frank, A.O., De Souza, L.H., 2014. Problematic clinical features of powered wheelchair users with severely disabling multiple sclerosis. Disability and Rehabilitation 37 (11), 990–999. Frank, A.O., De Souza, L.H., 2015. Rare diseases: matching wheelchair users with rare metabolic, neuromuscular or neurological disorders to electric powered indoor/outdoor wheelchairs (EPIOCs). Disability and Rehabilitation 38 (16), 1547–1556. Frank, A.O., De Souza, L.H., 2016. Problematic clinical features of children and adults with cerebral palsy who use electric powered indoor/outdoor wheelchairs: a cross-sectional study. Assistive Technology Rehabilitation Engineering Society of North America 29 (2), 68–75. Freeman, J.A., Hendrie, W., Creanor, S., Jarrett, L., Barton, A., Green, C., Marsden, J., Rogers, E., Zajicek, J., 2016. Standing up in multiple sclerosis (SUMS): protocol for a multi-centre randomised controlled trial evaluating the clinical and cost effectiveness of a home-based self-management standing frame programme in people with progressive multiple sclerosis. BMC Neurology 5, 16–62. Harpin, P., 2003. Adaptations Manual, second ed. Muscular Dystrophy Campaign. 4th International Interdisciplinary Conference on Posture,and Wheeled Mobility, 2010. International Best Practice Guidelines BPG4A Seat-Elevating Devices for Wheelchair Users 4th International Interdisciplinary Conference on Posture and Wheeled Mobility. International Organization for Standardization (ISO), 2008. ISO 7176-19:2008 Wheelchairs – Part 19: Wheeled Mobility Devices for Use as Seats in Motor Vehicles. International Organization for Standardization. Lacoste, M., Weiss-Lambrou, R., Allard, M., Dansereau, J., 2003. Powered tilt/recline systems: why and how are they used? Assistive Technology 15 (1), 58–68. Nilsson, L., Durkin, J., 2014. Assessment of learning powered mobility use—applying grounded theory to occupational performance. Journal of Rehabilitation Research and Development 51 (6), 963–974. Pope, P.M., 2007. Severe and Complex Neurological Disability. Elsevier. RESNA, 2013. Position on the application of wheelchair standing devices: current state of the literature. Rehabilitation Engineering Society of North America, p5. RESNA, 2015. Position on the application of tilt, recline, and elevating legrests for wheelchairs literature update. Rehabilitation Engineering Society of North America, p7. Shields, R.K., Dudley-Javoroski, S., 2005. Monitoring standing wheelchair use after spinal cord injury: a case report. Disability and Rehabilitation 27 (3), 142–146. World Health Organisation, 2001. International Classification of Functioning, Disability and Health (ICF). World Health Organisation.

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Assistive Technology Integration and Accessibility Simon Judge BARNS L EY HOS P I TA L , B A R N S L E Y A S S I S T I V E T E C H N O L O G Y T E A M, UNI VERS I TY O F S HEF F I E L D , S C H O O L O F H E A LT H A N D R E L AT E D R E S E A R C H , REHA BI L I TATI O N AND AS S I S TI VE TE C H N O L O G Y G R O U P, B A R N S L E Y, U N I T E D K I N G D O M

CHAPTER OUTLINE Overview����������������������������������������������������������������������������������������������������������������������������������������� 290 Introduction������������������������������������������������������������������������������������������������������������������������������������� 290 History and Research into Integration������������������������������������������������������������������������������������������ 291 Foundations of Electronic Assistive Technology and Integrated Systems������������������������������� 292 Computer Accessibility��������������������������������������������������������������������������������������������������������������� 292 Web Accessibility������������������������������������������������������������������������������������������������������������������������ 293 Standalone Integration�������������������������������������������������������������������������������������������������������������� 294 Communication Aid and Environmental Control Software����������������������������������������������������� 294 Wheelchair Controls������������������������������������������������������������������������������������������������������������������� 295 Development in Access Methods����������������������������������������������������������������������������������������������� 295 Tablet Technology for Assistive Technology����������������������������������������������������������������������������� 296 Looking Ahead��������������������������������������������������������������������������������������������������������������������������� 297 Reasons for Integration������������������������������������������������������������������������������������������������������������� 297 Factors to Consider When Recommending Integration��������������������������������������������������������������� 298 Individual Considerations���������������������������������������������������������������������������������������������������������� 298 Environmental Considerations�������������������������������������������������������������������������������������������������� 299 Integrator Considerations���������������������������������������������������������������������������������������������������������� 299 Models of Integration��������������������������������������������������������������������������������������������������������������������� 300 Dedicated Integrator Unit or Device-Switching Model����������������������������������������������������������� 301 Primary/Secondary Pass-Through Model����������������������������������������������������������������������������������� 301 Wheelchair as Base Model��������������������������������������������������������������������������������������������������������� 301 Assistive Technology Software-Mediated Model��������������������������������������������������������������������� 305 Operating System Model����������������������������������������������������������������������������������������������������������� 306 Conclusions�������������������������������������������������������������������������������������������������������������������������������������� 309 References��������������������������������������������������������������������������������������������������������������������������������������� 309 Handbook of Electronic Assistive Technology. https://doi.org/10.1016/B978-0-12-812487-1.00010-7 Copyright © 2019 Elsevier Ltd. All rights reserved.

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Overview A simple definition of integration of assistive technology (AT) would be where a user is able to access more than one function from a single control (access method). However, this definition would miss the complexities and subtleties of modern and future assistive systems and their interaction with mainstream computing and technology. Integration goes to the heart of the role of AT, its role in empowering individuals, ‘raising the floor’ to societal access and in providing access to technology. Integrated AT also strikes at the heart of discussions about the role of AT and the balance between providing adaptations to allow access to technology versus requiring mainstream technology to become accessible. Traditional modes of integration provided individuals with physical disabilities the ability to control two or more assistive devices, and each assistive device had a specific role – such as communication aid or environmental control (EC). These modes of integration still have their place in providing simplified and concrete interfaces to specific functions for some individuals. ‘Mainstream’ technology is designed to predominantly meet the needs of those in a population without disabilities, a process which has been described in design as the 95% rule (Norman, 1988). This technology has, however, provided significant benefits in the quality of life and potential for participation of individuals with disabilities. The invention of the internet, for example, is arguably the most significant step in empowering those with disabilities – and in integrating increasing numbers of ‘output’ functions. Access to the internet by people with disabilities has in many cases provided the ability to access services and increasingly environments such as shopping and banking, which may previously have been inaccessible. In parallel, developments in electronic assistive technology (EAT) devices have also increased the range of ways in which people with disabilities can access multiple outputs, for example, the advent of eye-gaze technology as a way of accessing mainstream computers (see Chapter 5). This chapter will present a range of different ways of creating and describing integrated AT systems and will discuss the development and evolution of this technology. The chapter will also review the possible future direction of integrated AT.

Introduction One way of defining integrated AT is to consider what nonintegrated technology looks like. A nonintegrated system would be one where a user applies themselves to controlling a single device that controls a single appliance; if the individual has a physical disability it is likely that this may be the only device that they are able to control. Imagine if your movements were restricted such that you were only able to use your TV remote control or your

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smartphone – which would you choose to use? One of these has implicitly more integration potential, but why? Most individuals have the luxury of being able to use both multiple controls and also devices with highly complex interfaces, both physically and cognitively. For those with severe disabilities their interaction with controls of any sort is likely to be significantly limited. The ability to control multiple appliances or output functions becomes an issue of empowerment, both in expanding the opportunities for the individual to interact with multiple aspects of the environment and also in reducing the reliance on others. Integration can be considered on a spectrum from integrating functions for those with only one binary (on/off) input such as the switch used by Stephen Hawking, to integration for those who have a relatively good ability to control a ‘high-bandwidth’ input, but in a constrained way such as using eye gaze to control a computer, to those considered ‘able bodied’ who increasingly use single interface devices such as mobile phones to control many functions of their life. There are benefits to an individual with disabilities in being able to access an integrated system although it is not always the case that an integrated system is desirable or optimal. Selina’s case study, provides an initial examination of the possible benefits of an integrated system.

Selina’s Case Study Selina is in her 50’s and has multiple sclerosis. She now spends a large proportion of her day in bed. Working with Selina we found that her preferred access method was to use a ‘sippuff’ switch mounted on a headset. Being body worn, this access method would move with Selina if she shifted position within her bed when on her own – ensuring that she was able to maintain use of it. During the day, Selina wanted to be able to use the computer with the sip-puff for mouse clicking in conjunction with a ‘head mouse’ while also retaining the ability to control the other equipment within her room; however, in the evenings and at night she just wanted to be able to control her phone and TV. To achieve this we provided an ‘integrator’. This standalone microprocessor-­based device allowed Selina to switch between her sip-puff controlling the computer mouse functions and the standalone EC system. To switch between computer and EC, Selina would use a long ‘sip’ – the integrator beeps to confirm the mode change – and then the sip-puff signal is sent to the other device.1

History and Research into Integration Within this section we describe, approximately chronologically, the development and evolution of integrated systems as part of the development of the wider EAT and related fields. 1 https://www.youtube.com/watch?v=08C2-WdD6F0.

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Foundations of Electronic Assistive Technology and Integrated Systems EAT emerged in the 1960s through the work of a number of pioneers often in institutions where a large cohort of individuals with disabilities resided. Early devices would be characterised as single function – they were designed to achieve a specific function based on a specific control method. Some early EAT did, however, include ‘additional functions’ with the device as a method of integration. For example, the early POSM environmental controls2 included a keyboard-based communication aid without voice output – integrating the main EC function with communication. The system was only accessible through the use of a ‘suck-puff’ mouth switch. Maling and Clarkson, inventers of the early versions of EAT EC systems, described the system as: The third line of the indicator entitled “Com.” stands for Communications and is again obtained by maintaining suction until the third panel is illuminated. But now there is a choice between telephone and typewriter and this choice is made by giving sustained pressure until either of these two panels becomes illuminated: Release of the pressure at either of the panels obtains the particular function. Maling and Clarkson (1963)

Vanderheiden (2002) provides an excellent history of EC, early augmentative and alternative communication (AAC) and computer access development, which gives context to the recent developments. ‘What we found was that most of the early interface technologies first appeared in Europe. They took the form of either environmental control systems or special systems to control a typewriter. Relays and solenoids were used to control power for appliances or to activate the keys on keyboards. Stepping relays and lights were used to create scanning and encoding selection mechanisms’ (Vanderheiden, 2002, p. 3). EAT devices continued to evolve in design with powered wheelchairs, communication aids and ECs developing into recognisable technologies and addressing discrete areas of human function: mobility, communication and control or manipulation.

Computer Accessibility The field of computer accessibility was pioneered in the late 1980 and 1990s in the main by the TRACE centre. Vanderheiden and Lee (1988) successfully promoted the adoption of computer accessibility features in Microsoft Windows and other operating systems. This work improved the accessibility of PCs to a wider range of individuals and initiated the field of computer accessibility through the development of a ‘co-operative industry rehabilitation group’ (Vanderheiden and Lee, 1988).

2 Sold

by the company that has now become Possum Ltd: www.possum.co.uk/about-us/.

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Although it might not be directly evident that the field of computer accessibility relates to integrating ATs, these were key steps. At the time, PCs had already integrated a range of tasks for those ‘nondisabled’ people using them at work and at home –­ allowing tasks that would previously have required separate machines or individuals to be centralised through one terminal. Improving the accessibility of PCs allowed people with disabilities to access these same benefits – the PC was an empowering tool of integration. At the same time, switches and other interface alternatives, which had been designed as access methods to these standalone ATs, became repurposed and viable as input methods to PCs. Colven and Detheridge (1990) describe the initial development of alternative access methods into PCs as: ‘The use of switches was pioneered in British education mainly on BBC and Apple II computers. The BBC had a port called the user port. It is now possible to get cards with a replica of the User Port for other machines’ (Colven and Detheridge, 1990). This early work led to the development of accessibility frameworks in most of the main operating systems. These frameworks and associated design standards allowed software developers to write software that would then natively work with assistive devices. In describing their early work, Vanderheiden and Lee (1988) acknowledge that many lowcost and no-cost modifications to computers would potentially increase the number of individuals who could use standard computers. They stated that in discussions with engineers and designers it became apparent that many of the desired changes could have been included in the design of computers initially if only the developers had been aware of the need for and impact of such changes.

Web Accessibility Web accessibility is another related field that emerged in the mid-1990s through the creation of the Web Access Initiative. Although arguably not an integration method directly, the improvements in web accessibility allowed many individuals to perform a wide range of functions using their control and access method. These include tasks that would previously have involved physical interactions such as shopping or banking. Dardailler (2017) provides a history of the Web Accessibility Initiative and quotes Tim Berners-Lee, the inventor of the World Wide Web: ‘The emergence of the World Wide Web has made it possible for individuals with appropriate computer and telecommunications equipment to interact as never before. It presents new challenges and new hopes to people with disabilities.’ When looking at both web and computer accessibility, while providing the potential to improve access via assistive devices, many accessibility frameworks rely on the software developer developing code that meets the standards and there was little incentive for developers to do this. Legislation to mandate the consideration and inclusion of accessibility frameworks and adaptations have attempted to address this. In the United States, the Section 508 Amendment to the Rehabilitation Act of 1973 provided a significant impetus to the improvement of web accessibility in requiring all federal agencies’

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electronic and information technology to be accessible to those with disabilities. This and legislation in other countries provided some legal basis to challenge issues with web and computer accessibility and drove better adherence to accessibility frameworks and standards, particularly in the domain of web accessibility (‘GSA Government-wide Section 508 Accessibility Program’, 2017).

Standalone Integration The first attempts to integrate standalone assistive systems emerged in the early 1990s. These efforts were based around wheelchair controls and providing the ability for an individual to use their wheelchair control to control the chair and also additional separate standalone devices. Hawley et al. (1992) suggested that the purpose of integrated control systems is to allow disabled people to access multiple functions from a single input device (e.g., a switch). In this way people with multiple disabilities can switch between operation of a wheelchair, communication aid, computer or their EC without requesting help from another person. By the mid-1990s the concept of integration of AT in its own right had emerged. In their paper, Cherry et al. (1996) described integration as a rehabilitation integrated system and categorised it as: 1. ‘Mechanical’ integration: a group of separate assistance devices has individual input devices. 2. ‘Hardwired’ integration: a group of separate assistance devices where two or more or all of these are operated from a single input device usually via a selection and switching interface. 3. ‘Computer’ integration: a single input device accessing via an ‘intelligent and readily reconfigurable’ interface a number of assistive functional outputs; at least indirect access to standard computer applications. 4. ‘Multimodal’ computer integration: a choice of input devices is available to operate a number of assistance devices (still with an intelligent and readily reconfigurable interface), direct access to standard computer applications is possible. Cherry et al. (1996)

Communication Aid and Environmental Control Software A fundamental shift in the development of communication aids provided potential ‘sideeffect’ integration benefits. Initial communication aids had been based on microcontrollers or operating systems functioning in a console mode (i.e., where the operating system was not exposed to the user). These devices have often been termed ‘dedicated devices’. In the early 1990s, with the advent of more flexible and accessible operating systems and more portable computer systems, AAC software that ran on operating systems on nondedicated computer platforms emerged.

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The potential benefits of this approach were described by Paul Hawes: This approach gives enormous power. The system can be designed from the start with the specific needs of the user in mind. The best input method may be selected from the wealth of special software now available to provide alternative inputs to the PC. For those with a visual problem, special output programs, especially those which magnify the image on the screen, are also available. This makes it possible to tailor the system very precisely to the needs of the user. Once the problem of access to the computer has been solved, the user can then choose some suitable applications, of which an AAC program may be only one. Hawes (1994)

As the use of standard computers and operating systems to power communication aids became more prevalent, the ability to use computers as ECs also developed. Initially, this was facilitated through using ‘plug-in’ transmitter units to send infrared signals. Blenkhorn et al. (1996) describe an early project innovation in developing a plug-in controller as flexible and inexpensive, potentially providing many functions at a low cost.

Wheelchair Controls Wheelchair control technology evolution has also provided additional integration avenues and functions. A number of systems were created that allowed an individual to use their wheelchair control to control other standalone equipment (e.g., an EC or AAC device). Initially developed as one-off custom-made devices, commercial wheelchair manufacturers began to develop integration functionality into their controllers, while others also developed customisable integration units using the protocols of other manufacturers. The WiseDX, for example, was a wheelchair system developed specifically for ­integrated access and control and designed to work with the Dynamic DX wheelchair control system. By this time, integrated systems had been available for a while and were mostly tailored to the needs of individuals. However, they lacked flexibility to be readily adaptable to meet the needs of a wide range of people with different abilities and requirements (Clayton, 1999).

Development in Access Methods By the late 1990s the main modes of integration had now been established and will be discussed in more detail in this section. However, further developments drove forward the possibilities for individuals with disabilities to access multiple functions from one control method. These developments included the expanding number of methods to allow access to computers. The prime example of this is the development of eye-gaze technology primarily driven by the further development of eye-gaze technology facilitated by the EU Communication by Gaze Interaction project (Bates et al., 2007). This new access technology

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is not an integration system, but by providing more options for computer access this technology opens up to more people the ability to control the range of functions that a computer can provide.

Tablet Technology for Assistive Technology Another development was the acclaimed ‘paradigm shift’ of smartphones and mobile computing (McNaughton and Light, 2013). While not directly adding to the ability of individuals to integrate, this rapid improvement in computing devices that were designed to be used away from a desk had obvious advantages for AT and the ability of individuals to control multiple functions in multiple environments. The journey of these devices as an AT and integration tool has been complex. The fundamental design of the operating systems, the expansion of the number of operating systems in popular use and the ‘democratisation’ of the software delivery method through app stores have had, and continue to have, both advantages and disadvantages. The iPod, one of the first of the new generation of mobile computing devices, was launched with an operating system designed entirely around the concept of touch control and minimal physical buttons. Initial releases of the device took little or no consideration of accessibility or individuals with alternative access needs. Apple addressed this in 2009 with the release of VoiceOver, essentially the first accessibility framework for iOS. From this point Apple has adopted a markedly different direction of travel in incorporating accessibility functions into its operating system, which will be discussed later in this chapter. The introduction of the iPad created a significant new market for AAC and other AT apps, while also providing additional integration challenges as the initial operating system did not allow for mouse-like devices (e.g., eye gaze) and other accessibility features. Android systems, with their less restrictive approach to app development and approval and open source operating system, also created a range of challenges. Android allowed for the development of apps and hardware with more integration potential. Examples of this are the Click2Phone3 and Tecla.4 Android also supported existing mouse-based devices to control them. However, the sporadic nature of the development of the Android operating system did not allow for a consistent accessibility framework to emerge and so users may find some apps totally inaccessible. As these operating systems have matured so has their attitude to integration and accessibility and they provide potential to move accessibility and integration toward a new integration paradigm – that of the mobile device as the personal controller. A prime example of this is Apple’s move to ‘bake in’ physical access settings for switches, and more importantly the quiet launch ‘platform switching’ – which allows a user to swap their control method between Apple devices independently. This vision is similar to the work carried

3 http://housemate.ie/. 4 https://gettecla.com/.

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out by Vanderheiden et al. (2013) as part of the Raising The Floor and then Global Public Inclusive Infrastructure (2017) projects.

Looking Ahead Looking ahead, a number of technological developments have potential to both challenge and develop the existing models of accessibility and integration (Atkin, 2017; Domingo, 2012). The most significant of these is likely the Internet of Things (IoT). In summary, this allows all objects in a built environment to be addressable so that all objects can provide information about their state or allow remote control of their functions. This initiative is arguably an evolution of the home automation and environmental control fields that have existed since the 1960s. If done correctly though, IoT offers significant potential to improve accessibility of the environment to people with disabilities. If accessibility is built into the IoT then devices and objects that previously would have required the assistance of a person to control them will become controllable by an individual with a disability. A simple example is a lift where an IoT lift will allow a user to see where it is and also to ‘hail’ it using their smartphone. There are parallels in the service economy where the basic functions of services have moved to be controllable over Internet Protocol (IP), such as getting an Uber instead of physically hailing a taxi. As the IoT continues to be developed, how accessibility is approached in this new computing architecture is not entirely clear, nor is the likely impact it will have on the lives of those individuals with disabilities.

Reasons for Integration The advantages of integrated controls are that an individual with limited motor control can access several devices with one access site and without assistance, and the user does not need to learn a different operating mechanism for each device (Ding et al., 2003). There are more specific advantages and disadvantages to each different model of integration and these should be considered before putting an integrated system in place. These trade-offs are described in the following section. Integrated access may be useful for the following reasons (Guerette and Sumi, 1994): • The user has one single reliable control site. • The optimal control interface for each assistive device is the same. • Speed, accuracy, ease of use or endurance increases with the use of a single interface. • The user or the family prefers integrated controls for aesthetic, performance or other subjective reasons.    As technology continues to become more pervasive in society, the peers of individuals may also be increasingly interacting and controlling their environment through smartphones. Thus another reason for integration may simply be that individuals desire greater independence and control. Chris’s case study provides examples of potential reasons for integration.

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Chris’s Case Study Chris is a young man who lives in Australia and is able to access a wide range of technology using a single head switch. Chris is a video editor and uses his switch to control the video editing and capture software on his computer and tablet/phone. Chris uses his video editing skills to great effect in uploading videos, demonstrating his switch access online, as well as blogging. Chris uses his switch via a wireless Bluetooth interface device to control all aspects of his technology – controlling his desktop computer that features functions more traditionally termed as EC (i.e., phone calls, TV, doors, lights, etc.). He does this by using mainstream protocols such as Apple TV, WeMo switches, etc. Chris is able to access additional aspects of control not traditionally available through EC systems – text messaging, web access (on any device) and instant messaging. As well as integrating the functions he is able to control using the system Chris is also able to integrate between devices – using ‘platform switching’ to independently switch between his desktop PC and his phone.5

Factors to Consider When Recommending Integration When making a decision to either use integrated access or separate control interfaces a number of factors need to be taken into account. This section attempts to list some of these considerations followed by a section that reviews factors specific to different integration modes. There are many factors to consider but the initial decision should be whether or not to consider an integrated system in the first place. It is important to ensure that accessing one technology is not compromising the performance and efficacy of the other, for example, the skills required to drive a powered wheelchair are different to those required to access a computer. Guerette and Sumi (1994) also concluded that integrated access may not be appropriate when: • Performance on one or more assistive devices is severely compromised by integrating control. • The individual wishes to operate an assistive device from a position other than a powered wheelchair. • Physical, cognitive or visual/perceptual limitations preclude integration. • It is the individual’s personal preference to use distributed controls.    The following section provides more detail on the potential factors to consider in the design of specific integrated systems.

Individual Considerations It is not appropriate to describe all the possible factors here and these should emerge from a comprehensive assessment (see Chapter 4). Two key factors should be noted, however: cognitive load and input ability. 5 https://www.youtube.com/watch?v=cSSgndQ5mVs; https://gettecla.com/blogs/news/50224517-meetchristopher-hills-known-as-the-switch-master-for-his-expertise-in-apples-switch-control; https://www. youtube.com/user/icdhills.

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Input Ability When considering if integration is required or not, it may be that the physical load of input is a key driver – where individuals have limited input ability, integration may be more likely to be indicated. Those with the ability to access a range of different access methods with ease are unlikely to require an integrated system. Any likely progression in a condition may also be considered. A specific example of this would be when considering the specification of a wheelchair control system for an individual where the likely prognosis is deterioration in their physical input ability (e.g., an individual living with motor neuron disease).

Cognitive Load When configuring integrated systems, the individual’s cognition plays an important role and will need to be addressed as part of the assessment process. For example, when using a wheelchair joystick to access a tablet-based communication aid, consideration should be given to the mode change method as it adds another level of complexity to the operation of those devices.

Environmental Considerations As with all AT provision there are a number of environmental considerations that will impact on a decision around what, if any, integration mode to provide. Some integration modes require day-to-day setup, which would require a third party (i.e., carer or assistant) to facilitate. For example, a system may require cables to be plugged in when the individual moves between settings such as a chair and bed. In addition, some systems may require a greater degree of skill in setup and configuration (e.g., where devices are required to be mounted on a chair and plugged in or where backups are required). Consideration of backup systems is also important either through technology or human-based systems as with an integrated system there is always a danger that if one aspect fails, all aspects fail. For example, if the single method of access to an integrated system is a joystick, a standalone joystick that can be used with the communication aid in isolation may also be needed so that the user is not left without a voice for a period of time.

Integrator Considerations Failure Mode An important feature of any integrated system should be its failure mode – it should be inherent in the design of any system that it fails safe. In many cases this will mean ensuring that the individual has a fail-safe method of calling for attention. For example, if the battery power on a dedicated switch integrator fails, the switch output should still be passed through to the main output. As another example, the Qwayo environmental controller from Possum6 provides access to an Android tablet and additional EC functions – however, 6 www.possum.co.uk/products/qwayo/.

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it offers a guaranteed fail-safe method of calling for attention via a pager or similar device if connection to the tablet, or the tablet itself, fails. Planning should ensure that possible failures in the system are considered. It should be clear what functions will be available if the main device fails, or if any other components of the system fail. A failure mode should be in place that allows the input device to control some function of the system or some other form of failure compensation, (e.g., restarting the system or sending a distress signal to a pager).

Mode Switching By the very nature of integrating functions, the user will need to switch between modes or outputs. This could be achieved in a number of ways and it should be clear how mode switching is achieved. There should also be a clear path between all modes (i.e., no ‘dead ends’ out of which a user cannot switch). In some cases, the mode switch may require a timing element (e.g., a long press or a timeout). In these situations, the implications of this should be considered if there are other time-sensitive controls in the system. For switch access to mode changes the concept of a ‘½ switch’ is useful to consider (Clayton, 1999; Judge and Colven, 2006) – this is a switch placed in a location that is possible for the user to access, but not the optimal location which would be reserved for the primary function switches, and also potentially a location where the individual is unlikely to accidentally press it.

Wheelchair Systems When considering the use of wheelchair controls as part of an integrated system, consideration needs to be given to the specific type of integration mode that the control system offers – for example, whether it provides proportional or switched/directional mouse output. When aiming to achieve integration using a wheelchair controller with single switch access, particular consideration needs to be taken around the mode switching and failure mode. This setup will require either a timeout, long press or similar for mode changing and these may in themselves clash with the output desired (e.g., a timeout will need to allow an entire scan pattern to be completed on the target device, or a long press will need to be compatible with the likely driving style of the wheelchair).

Models of Integration Integration can be conceptualised in a number of ways – traditionally, it would be seen as ‘sending’ a single input (e.g., switch) to a number of different devices. While this model still has relevance, the development of accessibility frameworks and more pervasive computing has revealed a number of other possible models. The following section attempts to broadly describe models of the different schemas for achieving integration. This is not designed to be an exhaustive, or entirely future-proof, description of the different modes,

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but to provide a framework for considering an integration model that may be appropriate for a specific individual.

Dedicated Integrator Unit or Device-Switching Model This is one of the more ‘traditional’ models of integration and is essentially as described by Hawley et al. in 1992. This approach still has relevance and advantages for some users. Integrating in this way requires an additional, external, integrator unit – this unit directs the input signals (e.g., switch signals) from one device to another (Fig. 10-1). To direct the signals, the user will have to control the integrator – either via a specific operation of the input (e.g., long switch press) or through an additional ‘mode’ switch input. The advantages and disadvantages of such systems are listed in Table 10-1. In Selina’s case (see Selina’s Case Study section) the benefits of this model are that she is able to have distinct controls for each device. Head mouse for computer, using sippuff for mouse clicks. Switching using sip-puff and sip-puff for EC scanning. The system is simpler to set up and will default to the EC system if the power or battery in the integrator fails – ensuring that Selina is still able to call for attention in these situations. This mode requires either a custom-made integrator unit or one of the few commercial units available such as the CSS ClickMan7 (Fig. 10-2).

Primary/Secondary Pass-Through Model In this case the user has a primary device that they use as their main device – i.e., they use it for most of the day or in most situations of importance, (Fig. 10-3). Through this device they are then able to access a secondary and potentially third device. The primary device is acting as the integrator in this model. This model can be realised in different ways: 1. The input is ‘passed through’ the primary device and will be sent back to control the primary device after a timeout, or through the use of a mode switch. Although there are now few assistive devices that support this mode, this mode does describe Apple’s ‘Platform Switching’ feature. 2. The input is used to send a range of other signals from the main device to the secondary device. For example, the control method of the main device (e.g., a switch) could be used to send mouse navigation commands or text output via infrared.    The benefits and disadvantages of this model are listed in Table 10-2.

Wheelchair as Base Model This is a variant of the primary/secondary device model (Fig. 10-4). 7 https://www.csslabs.de/cms/index.php/de/component/k2/item/52-clickman-adaptiver-multicontrollerfuer-einfachsensoren.

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Device 1 E.g. Communicaon Aid

Input. e.g. Switch(es)

Integrator Unit

Device 2 E.g. Pager Mode Funcon: e.g. long press on input switch.

Mode Switch or Funcon

FIGURE 10-1  Schema of the dedicated integrator model of integration.

Table 10-1  Advantages and Disadvantages of Dedicated Integrator Unit or DeviceSwitching Model Benefits

Disadvantages

Simplicity of setup. Simplicity of use (if the user can understand the function of the mode switch). Ability to use with existing, standalone technology (which the user may already have in place). Flexibility of setup – in being able to use each device separately or with the integrator. Continuous fail-safe option. Ability to use with any existing technology or varying devices.

The potential for error in setup (i.e., plugging in cables). Need for the user to understand a ‘long’ or other mode press, or to need an additional switch. Additional maintenance load of providing an additional device. Additional setup load on the support staff. Sourcing or manufacture of integrator device.

An example of this model could be an individual who controls a powered wheelchair with a joystick. As with the device-switching model, this model requires either a mode switch or a mode function (e.g., a long press). In most cases the user will be able to use the mode button on the joystick to switch between driving mode and output mode – and the joystick signals (e.g., four switch directions and buttons) are then sent to another device (e.g., a communication aid). Another example is the use of devices which overfit a joystick control and send mouse signals to the device. In this case, the user turns the wheelchair off to operate the secondary device. Joystick control is not required to be able to use the wheelchair as the primary device – it is possible to use any input method to achieve this – for example, a directional switch control such as four switches on a wheelchair tray. It is also possible to achieve this with a

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FIGURE 10-2  CSS ClickMan.

Input. e.g. Switch(es)

Device 1 E.g. Communicaon Aid

OUTPUT Signal

Device 2 E.g. Computer

Mode Switch or Funcon FIGURE 10-3  Primary/secondary pass-through model.

single switch control method – although this can become very complex and many wheelchair control systems are unlikely to support this well. There are also examples of this integration mode in other devices – for example, some individuals have used their eye-gaze-controlled communication aid to control a wheelchair (e.g., Eyedrivomatic8 and Rolltalk wheelchair controller9). In this mode, the communication aid is the primary device and the wheelchair the secondary (see James’s Case Study). The benefits and disadvantages of such system are listed in Table 10-3. Example devices for wheelchair as base include BJoy Ring,10 RNET Bluetooth mouse Module11 and LiNX.12 8 https://www.eyedrivomatic.org. 9 http://www.abilia.com/en/product/rolltalk-wheelchair-controller?product_category=17. 10 http://bjliveat.com/bjoy-mice/240-BJOY-ring.html. 11 http://www.cw-industrialgroup.com/Products/Mobility-Vehicle-Solutions/R-net/Bluetooth-MouseModule.aspx. 12 https://dynamiccontrols.com/en/designers-and-manufacturers/products/linx-le/linx-le-2.

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Table 10-2  Advantages and Disadvantages of the Primary/Secondary Pass-Through Model Benefits

Disadvantages

Minimises additional hardware. Simpler maintenance requirement.

May be complex to set up. Need for the user to understand a ‘long’ or other mode press if using mode, and for the output control to be compatible with this (i.e., does not require long switch presses). Need for user to understand signal ‘timeout’ if using this mode, and for the output control to be compatible with this. Can be complex to understand as user has to translate input method to output method (e.g., switch scanning to mouse movement). User required to use primary device at all times. Potential for output to become ‘stuck’ in secondary device – i.e., if there is no built-in fail-safe mechanism.

Potentially more seamless user experience as switch input is ‘passed’ between devices.

Device 1 E.g.computer

OUTPUT Signal

Input. e.g. Joysck

OUTPUT Signal

Device 2 E.g. AAC device

Mode Switch or funcon (Or power switch) FIGURE 10-4  Wheelchair as base model. AAC, augmentative and alternative communication.

James’s Case Study James is a 50-year-old man with cerebral palsy. James lives at home independently, with some care support visits from personal assistants to assist him with eating and other activities of daily living. James has been an active user of AT for much of his life and has used it to support him taking two degrees. James has dysarthric speech that is understandable to those who know him well but challenging to understand for others. James has tried many modes of integration technology and different devices for EC, computer access and communication. After trying a number of different modes, James now

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Table 10-3  Advantages and Disadvantages of Wheelchair as Base Model Benefits

Disadvantages

Potentially simple setup if using wheelchair control system that is ‘plug and play’. Simplicity of use – there is only one control and the same mode button as the wheelchair. Can be used with other integration modes – e.g., integrating via a computer or tablet.

Potentially complex setup depending on method. The user must understand the concept of modes on the wheelchair. Likely to need to provide additional access method for when the user is not in the wheelchair. May need to provide additional assistive devices for when the user is not in the wheelchair. No default fail-safe mode (if the wheelchair fails).

controls his system predominantly through his wheelchair joystick. James uses the mode switch to switch between driving mode and Bluetooth mouse mode, which then sends a Bluetooth mouse signal to his tablet computer (this is a feature of his wheelchair control module). By controlling his tablet, James can use the onscreen keyboard to text message; James also uses a specific AT app and EC device (Possum Qwayo13) to control equipment within his home. James is able to save and speak simple phrases through the device to support his speech in situations when he requires it (e.g., in drama group). In addition, James accesses all the other aspects and apps of the tablet device using the Bluetooth mouse. James is also able to access the tablet using his large-sized keyboard and desktop joystick mouse – he is able to switch between using these with the tablet and the desktop computer by using a mainstream ‘switch’ (ATEN). This allows him to reply to text messages or preprepare AAC phrases using the keyboard, rather than having to use the onscreen keyboard – which is quicker. As well as this system, during the evening, James is able to use scanning on the same interface to control the same equipment using a switch placed by his bed.

Assistive Technology Software-Mediated Model This model uses specifically designed AT software as the integration device. This software will generally be designed to accept a wide range of access devices such as switches, eye gaze and to facilitate AAC, EC and computer access functionality. The AT software can be designed to run as an application on a common operating system, to run on an operating system in ‘console mode’ (i.e., not exposing the underlying operating system) or to run on a dedicated operating system. The most obvious way in which this model can work is in integrating AAC (e.g., speech output such as a phrase) and EC (e.g., infrared output such as TV control) functions, but other modes exist. For example, this software can integrate other functions available via the computer such as messaging (i.e., email and SMS). The software can also facilitate either mediated or unmediated access to the operating system. Unmediated integration with 13 http://www.possum.co.uk/product/105.

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the operating system would allow direct mouse and/or keyboard control. Alternatively, mediated access would be where the software provides an often simplified interface to specific software on the computer. Mediated access allows the user to integrate access to all these output functions (e.g., Voice over Internet Protocol calls, word processing, etc.) while reducing either the cognitive or access load on the individual (Fig. 10-5). Grid 3,14 and Mind Express15 are examples of the software-mediated model. Benefits and disadvantages of this model are listed in Table 10-4. Pauline’s case study will provide an example of this model.

Pauline’s Case Study Pauline is a 35-year-old woman with cerebral palsy and moderate learning difficulty. Pauline lives in supported accommodation and is independent around the house using a powered wheelchair with a single switch in her headrest. Pauline controls a communication aid using a head mouse and uses this as a significant part of her AAC to support her severely dysarthric speech, particularly when communicating with unfamiliar partners. To select items on her communication software, Pauline ‘dwells’ – i.e., holds the cursor in the same cell for a specific time (around 2 seconds). As well as using the device and software to communicate, Paula uses the system to control her environment – by sending infrared commands to her television and internal door openers. Pauline also uses the system to control her phone and to read (using text to speech) and send emails.16

Operating System Model This model uses a standard operating system as the integration system. This relies on the operating system allowing the input method as a control method. This can be supported either: • Through the operating system supporting devices that emulate standard input methods such as a mouse (e.g., eye gaze, head mouse, etc.); or • Where the operating system has specifically made adaptations to accept alternative input methods such as a switch input. These adaptations would be referred to as part of the accessibility architecture.    A ‘pure’ version of this model would then allow control of the whole computer through entirely mainstream applications – however, it is likely that many will use specifically designed AT software to facilitate some of the functions they wish to control (e.g., AAC or EC) or to improve the access experience (e.g., a dwell clicker that automatically applies a left click after a user hovers the mouse in a spot for a predefined time). This model might be considered as more recent; however, as explained in the introduction, the use of alternative input methods to an operating system has been an integration option for many years. In addition, this model moves beyond the more conventional 14 https://thinksmartbox.com/grid-3/. 15 www.jabbla.com/products.asp?itemID=9. 16 http://youtu.be/0x0TcekSDM8.

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Computer Funcon 4 – e.g. Facebook

Computer Funcon 3 – e.g. Web Computer Funcon 2 – e.g. SMS Computer Funcon 1 – e.g. Email AT Soware

Input. e.g. Switch(es)

Device 3 E.g. Phone Device 2 E.g. TV

Device 1 E.g. Pager Remote Signal (e.g. IR)

FIGURE 10-5  Assistive technology software as integrator model schema. AT, assistive technology; IR, infrared.

Table 10-4  Advantages and Disadvantage of Assistive Technology (AT) Software as Integrator Model Benefits

Disadvantages

Potentially simple setup.

Requires dedicated AT software that requires updating with operating system and other changes. Likely to have reduced functionality in accessing other software if mediated. Dependent on other software and/or operating system maintaining access to functions (i.e., via an application programming interface, keyboard commands or similar).

Simplicity of use: ability to create mediated/simplified interfaces and make control of all devices similar. No need to be familiar with operating system.

thoughts of AT integration – alternative computer access providing access to the internet allows integration of many functions that previously would not have been considered (e.g., banking, shopping, email, transport, messaging and virtual environments) (Fig. 10-6). Examples of such systems are Tobii’s Gaze interaction software,17 which allows full access to the operating system and all functions that can be controlled from Windows

17 www.tobiidynavox.com/en-GB/devices/Eye-Gaze-Devices/campaign-pceye-mini/.

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Plug In transmier

Remote Signal (e.g. IR)

Device 2 E.g. TV Device 1 E.g. Socket

Operang System

Input. e.g. Switch(es)

Soware (app)

Controls

Controls

Controls

Device 3 E.g. Light Device 2 E.g. Mobile Phone (Bluetooth)

Device 1 E.g. TV (IP) IP or other nave signal / protocol

FIGURE 10-6  Operating system as integrator model schema. IP, internet Protocol; IR, infrared.

and switch access to iOS18 through accessibility options. The latter offers full access to all iPhone, iPad and desktop operating systems. The benefits and disadvantages of this model are listed in Table 10-5. See John’s case study for an example of using this model.

John’s Case Study John is a 45-year-old man who had a brain stem stroke that resulted in partial locked-in syndrome. John is able to move his eyes up and down, and his ability to move them to some degree to the side improved after a year or two poststroke. John is also able to move his thumb laterally and press it slightly against his palm; this ability also improved over time since his stroke. A custom switch was made for John that ‘captured’ the thumb movement. John also extensively trialled eye-gaze technology, both with dwell clicking and then in conjunction with the switch for selection. Initially, John used a ‘software-mediated’ system and switched independently between eye gaze and switch scanning using auto scan through a single switch. After these developments, John settled on preferring switch scanning only, as he found this more reliable and quicker. John is able to switch scan at a rate of around 800 milliseconds. 18 https://support.apple.com/en-gb/HT201370 and https://www.ablenetinc.com/emails/Announcements/ iOS11-Accessibility.html.

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Table 10-5  Advantages and Disadvantages: Operating System Model Benefits

Disadvantages

Potentially simple setup – no additional software required. Access to all aspects of the operating system. Theoretically able to access all software installed on the operating system.

Requirement of familiarity with operating system. Complexity of use. Dependent on operating system supplier for accessibility features (and maintenance of these). Relies on software developers to develop applications that comply with accessibility frameworks/standards.

John uses the ‘baked-in’ switch scanning of iOS on an iPad device. Using this, John is able to access an AAC app, his email, internet and all the other apps available such as language learning apps, assuming they have been appropriately designed for switch scanning, including an app that allows control of his TV over IP (i.e., EC).

Conclusions In this chapter we have described a range of different approaches to integration, pertinent factors that will impact on the consideration of an integrated system and the potential challenges and benefits of providing integrated systems. Integration of AT spans a range of approaches from providing access to two distinct devices such as a communication aid and EC to using computer accessibility frameworks to provide access to computer operating systems. This area of AT is fast developing as accessibility to operating systems evolves, AT developers create additional apps and access methods and as new innovations such as the IoT emerge. Many aspects of the evolution of integrated AT into mainstream technology and operating systems is likely to be profoundly beneficial as this may remove some of the existing societal and environmental barriers that people with disabilities face on a day-to-day basis. However, the risks of these developments are that AT developments become entirely dependent on the ‘Big Tech’ companies. It is likely that AT developers will continue to have a key role in many forms of AT integration. It is also clear that the role of AT professionals will remain key in assessing and supporting individuals to access these technologies and in supporting them to achieve the level of independence and participation in the environments and ultimately the society that they desire.

References Atkin, R., 2017. Building Connected Products that Help Disabled People. Available at: http://www.rossatkin.com/wp/?portfolio=oreilly-solid-2015. Bates, R., Donegan, M., Istance, H.O., Hansen, J.P., Räihä, K.J., 2007. Introducing COGAIN: communication by gaze interaction. Universal Access in the Information Society 6 (2), 159–166.

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Blenkhorn, P., Hawes, P., Hawley, M., 1996. Environmental control from portable c­omputers. Communication Matters Journal 10 (2). Cherry, A.D., Cudd, P.A., Hawley, M.S., 1996. Providing rehabilitation integrated systems using existing rehabilitation technology. Medical Engineering and Physics 18 (3), 187–192. Clayton, C., 1999. A programmable integrated access system: the WISE: dx. Assistive Technology on the Threshold of the New Millennium 6, 148. Colven, D., Detheridge, T., 1990. A Common Terminology for Switch Controlled Software. Dardailler, D., 2017. WAI History. Available at: https://www.w3.org/WAI/history. Ding, D., Cooper, R., Kaminski, B.A., Kanaly, J., Allegretti, A., Chaves, E., Hubbard, S., 2003. Integrated control and related technology of assistive devices. Assistive Technology: The Official Journal of RESNA 15 (2), 89–97. Domingo, M., 2012. An overview of the internet of things for people with disabilities. Journal of Network and Computer Applications 35 (2), 584–596. GSA Government-Wide Section 508 Accessibility Program, 2017. Retrieved from: https://www.section508. gov/. Global Public Infrastructure Initiative (GPII), 2017. Available at: https://gpii.net/. Guerette, P., Sumi, E., 1994. Integrating control of multiple assistive devices: a retrospective review. Assistive Technology 6 (1), 67–76. Hawes, P., 1994. Using standard equipment for AAC. Communication Matters Journal 8 (2). Hawley, M.S., Cudd, P.A., Wells, J.H., Wilson, A.J., Judd, P.L., 1992. Wheelchair-mounted integrated control systems for multiply handicapped people. Journal of Biomedical Engineering 14 (3), 193–198. Judge, S., Colven, D., 2006. Switch Access to Technology - A Comprehensive Guide. The ACE Centre, Oxford. Maling, R.G., Clarkson, D.C., 1963. Electronic controls for the tetraplegic (possum) (patient operated selector mechanisms—P.O. S.M.). Paraplegia 1, 161–174. McNaughton, D., Light, J., 2013. The iPad and mobile technology revolution: benefits and challenges for individuals who require augmentative and alternative communication. Augmentative and Alternative Communication 29 (2), 107–116. Norman, D., 1988. The Psychology of Everyday Things: Basic Books. Vanderheiden, G., Lee, C.C., 1988. Consideration in the design of computers to increase their accessibility by persons with disabilities. In: Industry/Government Computer Accessibility Task Force. Trace R&D center. Vanderheiden, G.C., Treviranus, J., Chourasia, A., 2013. The global public inclusive infrastructure (GPII). In: Paper Presented at the Proceedings of the 15th International ACM SIGACCESS Conference on Computers and Accessibility. Vanderheiden, G., 2002. A journey through early augmentative communication and computer access. Journal of Rehabilitation Research and Development 39 (6), 39–53.

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Robotics Konstantinos Sirlantzis1, Layla Bashir Larsen1,2, Lakshmi Krisha Kanumuru1, Paul Oprea1 1 INTEL L I GENT I NTERACTI O NS GROU P, S C H O O L O F E N G I N E E R I N G A N D D I G I TA L A RT S , UNIVE RS I TY O F KENT, CANTERBURY, K E N T, U N I T E D K I N G D O M; 2 E A S T K E N T H O S P I TA L S UN I VERS I TY F O UNDATI O N TRUS T, D E PA RT ME N T O F ME D I C A L P H Y S I C S , K E N T A N D CAN TERBURY HO S PI TAL , ETHEL BE RT R O A D , C A N T E R B U RY, K E N T, U N I T E D K I N G D O M

CHAPTER OUTLINE Background������������������������������������������������������������������������������������������������������������������������������������� 311 A Brief History of Robotics������������������������������������������������������������������������������������������������������������� 312 Emergence of Assistive Robots������������������������������������������������������������������������������������������������������ 313 Application of Robotics in Rehabilitation������������������������������������������������������������������������������������� 314 Robots for Physical Therapy and Movement Assistance���������������������������������������������������������� 314 Socially Assistive Robots������������������������������������������������������������������������������������������������������������� 329 Robots for Supporting Activities of Daily Living (ADL)������������������������������������������������������������ 332 Design Considerations for Robotic Exoskeletons������������������������������������������������������������������������� 332 Roboethics��������������������������������������������������������������������������������������������������������������������������������������� 337 Future of Robotics��������������������������������������������������������������������������������������������������������������������������� 339 References��������������������������������������������������������������������������������������������������������������������������������������� 340

Background The word robot originates from the Czech word for ‘forced labour’, and was coined by the Czech playwright Karel Capek in the1920s to describe machines that resemble humans. It underwent a variety of definition permutations through the decades. As defined by the Robotics Institute of America, a robot is a reprogrammable, multifunctional, manipulator designed to move material, parts, tools or specialised devices through various programmed motions for the performance of a variety of tasks (Hillman, 2004; Kurfess, 2005). Michael Brady defined robotics as the field concerned with the connection of perception to action (Brady, 1985). Robotics is a multidisciplinary field, combining areas such as mechanics, electronics, computer science, cybernetics, artificial intelligence, physics and mathematics (Veruggio, 2006). Rehabilitation robotics is the field that applies robotics to medical rehabilitation, to enable disabled people to function with maximum autonomy and support recovery Handbook of Electronic Assistive Technology. https://doi.org/10.1016/B978-0-12-812487-1.00011-9 Copyright © 2019 Elsevier Ltd. All rights reserved.

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(Rocon and Pons, 2011). An assistive robot is an actuated mechanism programmable in two or more axes with a degree of autonomy, which performs useful tasks for disabled and/or elderly people to overcome social, infrastructural and other barriers to independence, full participation in society and carrying out activities safely and easily (Hersh and Johnson, 2008). The need for robotic technology is on the rise due to the global trend of a growing ageing population, which directly results in the following (Zollo et al., 2013): • A considerably larger number of elderly people in need of care, including social, home and healthcare services. • A smaller number of available informal caregivers (e.g., family caregivers). • A shrinking healthcare workforce to provide care to increasing patient numbers. • An increasing need in both developing and developed countries for assistive technology and services.    In response to these needs, specialised technologies such as assistive robots are being developed that have the potential to empower people with disabilities to be more independent and become more involved in activities in their homes, schools and communities (Zollo et al., 2013).

A Brief History of Robotics The main era of robotic research and development was the mid-20th century, primarily within an industrial environment where repetitive movements and lifting of heavy objects made the use of machines over humans attractive. Robots were mainly employed for tasks that were too dirty, distant or dangerous for humans (Krebs and Volpe, 2013). Joseph F. Engelberger and George Devol developed the first industrially used robot, the Unimate, in 1961. This was a hydraulically driven, programmable, 2 tonne robotic arm, adopted for automated die-casting. Engelberger had an interest in service robotics particularly in medical applications, and in 1984 he formed HelpMate Robotics. The HelpMate was used to transport medical supplies around a hospital. In the late 1960s, Scheinman from Stanford University innovated the first successfully computer-controlled electrically powered robot arm – the Stanford arm. The articulated arm had 6 degrees of freedom (DOFs) (Moran, 2007). Within the same decade, Stanford Research Institute developed the robot ‘Shakey’, equipped with a vision system and bump sensors. This was the first robot which used an artificial intelligence planner to gather images of its surrounding environment and apply this to map a route to a user-­specified position. The robot was able to steer by differential control of its two drive motors and could navigate its way around halls, applying information it obtained from its route (Nilsson, 1984). Shakey could move at a speed of 2 metres per hour. The robot was known as Shakey because its mounted camera shook as the robot moved. Concurrently, Stanford also began development of the Stanford Cart, which was a remotely controlled, TV-equipped mobile robot. By 1979, the robot was able to successfully

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cross a room filled with chairs without any interference (Moravec, 1983). Also in the 1970s, ASEA IRB 6 was launched, which was the first robot to be electronically driven and controlled by the Intel 8008, one of their earliest microprocessors (Thiessen, 1981). Provision of feedback from robotic devices was the next major development. The Massachusetts Institute of Technology (MIT) ‘Silver Arm’ was developed in 1974 to assemble small parts with the use of feedback from touch and pressure sensors (Moran, 2007). The first robot with embedded motors, the direct drive robotic arm, was developed by Takeo Kanade in 1981. The electric motors housed within the joints removed the need for chains or tendons used in earlier robots. This circumvented the need for long transmissions and instead employed direct drive arms that minimised backlash and friction, making them faster and more accurate (Asada et al., 1983).

Emergence of Assistive Robots Active assistive robots for upper limb rehabilitation have been developed since the 1960s. The first computerised arm, the Case Research Arm (developed at the Case Institute of Technology), was a floor-mounted, 4 DOFs, externally powered robotic arm (Leblanc and Leifer, 1982). It carried a paralysed user’s arm through a range of manipulation sequences when the user directed a head-mounted light beam at photoreceptors mounted on selected objects. This work was progressed at the Rancho Los Amigos Hospital in California, where in 1969 the Rancho Golden Arm was developed. This was a battery-powered orthotic device with the same design concept as the Case system but without computer control (Moe and Schwartz, 1972). It was used to help people with disabilities by supporting and moving their arm to augment function. The arm had six joints to give it the flexibility of a human arm, and was operated by using seven tongue switches in a sequential mode (Harwin et al., 1995). In 1978, the US Department of Veterans Affairs (VA) Palo Alto Health Care System and the School of Engineering at Stanford University (SU) collaborated on a 15-year rehabilitation robotics programme. The programme started with the ‘Robotic Aid Project’, which aimed to apply industrial robotics technology combined with commercial and prototype user interface devices, to develop a system that could be used by people with quadriplegia (Rocon and Pons, 2011). The system implemented voice recognition technology to control the robot. This was followed by the Clinical Robotics Laboratory project (1985–89), which was established to develop and evaluate a new generation of desktop robots, to assist people in performing activities of daily living (ADL). The Mobile Vocational Assistant Robot (MoVAR) project began in 1983. The MoVAR used a mobile base and had the ability to manipulate objects using a robotic arm (a commercial PUMA-250 arm), go through interior doorways and display its surroundings via a mounted camera system. The system interfaced with patients using voice control, keyboard or head movements. The final noteworthy collaboration (1989–94) of VA/SU was the Desktop Vocational Assistant Robot, a desktop version of the MoVAR, which was mainly developed for use in a vocational environment (Van der Loos, 1995).

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Application of Robotics in Rehabilitation The field of rehabilitation robotics is diverse and over the last few decades, robots have been developed for assistive and rehabilitative functions. They can be broadly classified into the following three categories: 1. Robots for physical therapy and movement assistance. 2. Socially assistive robots. 3. Robots for supporting Activities of Daily Living (ADL).   

Robots for Physical Therapy and Movement Assistance A number of systems have been developed to provide limb movement therapy for people with neuromuscular disorders, particularly stroke. Physiotherapy works on the principle that repetitive exercise programmes in assistive external environments, enable the rewiring or strengthening of neuromuscular pathways to the brain. A major goal of rehabilitation following stroke is to promote recovery of lost motor control. Evidence suggests that providing early, intensive, task-specific therapy with multisensory stimulation leads to effective rehabilitation outcomes (Poli et al., 2013; Masiero et al., 2014). Several studies highlight the capacity for motor learning resulting from intensive, repetitive and task-oriented motor activities. However, conventional therapy is labour intensive and physically demanding. Therefore cost and labour limitations have meant that traditional therapies are not delivered more intensively or frequently (Norouzi-Gheidari et al., 2012). A role thus exists for integrating robotic devices into clinical practice, that can provide effective therapy for neurorehabilitation, while decreasing the burden on clinical staff and the costs of health care (Lum et al., 2005). The use of robotic technology in physical therapy offers the following benefits (Huang and Krakauer, 2009): • Robots have the potential to provide intensive, highly repetitive rehabilitation training protocols consistently and for longer durations, thereby reducing the risk of excessive fatigue for physiotherapists and enabling standardisation of rehabilitation protocols. • They enable us to measure movement kinematics and dynamics, and thereby objectively evaluate progress or changes in impairment in response to treatment. • They offer the possibility to provide complex, controlled multisensory stimuli to the user enabling the performance of various task-orientated activities.    It should be noted that the application of robotic technology in clinical practice is not intended to replace physiotherapists but to support and complement conventional physiotherapy (Babaiasl et al., 2015). Robotic rehabilitation systems developed to date can be classified based on (Gopura and Kiguchi, 2009): • The applied segment (upper limb, lower limb). • The number of DOFs offered.

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• The type of applied actuators. • The power transmission methods (gear drive, cable drive, linkage mechanism, etc.). • The function/application (assistive, rehabilitation, performance augmentation). • Their mechanical characteristics (end-effector or exoskeleton).   

Upper Limb Robotic Rehabilitation Systems In terms of their mechanical structures, upper limb robotic systems can be broadly classified into two types: end-effector-based systems and exoskeleton-based systems (Lo and Xie, 2012). Earlier systems that were developed were end-effector-based devices, which contact the user’s limb at its most distal end. The joints of end-effector-based systems do not match that of the human limb. These systems have simple mechanical structures and can easily be adjusted to fit users with different limb lengths. More recently, exoskeleton systems or devices mimicking the skeletal structure of the limb have been developed, where the joints and links of the robot directly correspond with human joints and limbs, and the robot axes align with the anatomical axis of the upper limb (Gopura et al., 2016). Exoskeleton systems provide more independent and precise control of the impaired limb. Four main strategies have been employed when using robotic devices to support upper limb rehabilitation (Huang and Krakauer, 2009). These are: 1. Passive: The movement is initiated and imposed by the robot. 2. Active assisted: The user initiates the movement but the robot assists the movement along a predefined path. 3. Active resisted: The user initiates and moves against a resistance generated by the robot. 4. Bimanual exercise: Active movement of the unaffected arm is mirrored by simultaneous active/passive/assistive movement of the affected arm using the robotic device.    Many of the robotic systems developed incorporate multiple operating strategies in a single device. Several reviews have been published exploring the effectiveness of robot-assisted therapy for upper limb rehabilitation following stroke (Veerbeek et al., 2017; Norouzi-Gheidari et al., 2012; Mehrholz et al., 2012). However, these studies have presented a mixed picture. Norouzi-Gheidari et al. concluded that robotic therapy does not provide any benefit over conventional therapy in terms of motor recovery, ADL, strength and motor control, but additional sessions of robotic therapy in addition to conventional therapy promoted better recovery of the hemiparetic elbow and shoulder (Norouzi-Gheidari et al., 2012). More recently, a review conducted by Veerbeek et al. through meta analysis of 38 trials found that robot assisted therapy in stroke rehabilitation for the upper limb led to small improvements in motor control and muscle strength of the paretic arm and a negative effect on muscle tone (Veerbeek et al., 2017). They did not find any effect of robot-assisted therapy

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for basic ADL. The literature comprises of findings from trials employing a range of robotic systems, training protocols and patient characteristics. This presents a challenge when assessing the outcomes robotic therapy. However, what is clear is the potential that such systems offer and the need for more high quality trials. Some of the most prominent systems developed for upper limb rehabilitation are briefly described next. MIT-MANUS MIT began developing the MIT-MANUS in 1989 for the rehabilitation of the shoulder and elbow of stroke patients (Hogan et al., 1992). This was the first robot employed in clinical trials for delivering rehabilitation therapy. This end-effector-based system incorporated a 2 DOFs robot that used a direct-drive, five-bar linkage, selective compliant assembly robot arm configuration. The commercial version of MIT-MANUS is called InMotion (Fig. 11-1), and is available through Bionik Laboratories.1 The system employs video games to engage patients to carry out defined exercise routines. For patients who are able to initiate arm movement, the robot provides adjustable levels of assistance to facilitate the movement. Additional modules for the system have been developed allowing 3 DOFs wrist motion (allowing abduction/adduction, flexion/extension and pronation/supination), vertical movements (via an antigravity module) and hand grasp (Lo et al., 2010). The device provides assistive or resistive forces as well as a passive mode (Krebs et al., 1999). MIRROR IMAGE MOTION ENABLER The Mirror Image Motion Enabler (MIME) is an end-effector-based system developed at Palo Alto Rehabilitation R&D Center. The system has 6 DOFs and performs both unilateral

FIGURE 11-1  InMotion arm, Bionik Laboratories: http://bionikusa.com/healthcarereform/upper-extremityrehabilitiation/inmotion2-arm/. 1 https://www.bioniklabs.com/.

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and bilateral upper limb (elbow and shoulder) training. It can be used in passive, active and bimanual modes (Ho et al., 2011). The system uses a Puma 560 robot arm to apply forces to the paretic limb and assist movement. It interfaces with the hand via a splint and a connector that breaks away if interaction forces become excessive (Lum et al., 2005). GENTLE/S SYSTEM The GENTLE/s project was funded by the European Commission to evaluate the effect of robot-aided therapy in stroke rehabilitation. The GENTLE/s system (Fig. 11-2)2 is based on haptics and virtual reality visualisation techniques. It incorporates a commercial robot, the Haptic Master (FCS Robotics, Netherlands), which provides reaching movements in 3 active DOFs. The patient moves against a resisted haptic arm in a computer-generated virtual 3D room. The GENTLE/s includes three therapy modes: passive, active-assisted and active-resisted mode (Coote, 2008). REHAROB THERAPEUTIC SYSTEM REHAROB (Fig. 11-3)3 was an EU-funded project under the 5th Framework Programme, looking at the development of a robotic rehabilitation system (REHAROB) to support upper limb (shoulder and elbow) physiotherapy of patients with spastic hemiparesis. The project used existing industrial robots equipped with extra safety systems to automate physiotherapy motions and mobilise patients’ arms along arbitrary trajectories (Fazekas, 2009). REHAROB was an end-effector-based system, which used two industrial robots each to move the upper and lower arm. REHAROB differs from the MIT-MANUS

FIGURE 11-2 GENTLE/s.

2 http://www.gentle.reading.ac.uk/. 3 https://www.researchgate.net/figure/The-REHAROB-Therapeutic-System_fig1_6114872.

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FIGURE 11-3  REHAROB therapeutic system (Fazekas et al., 2007).

and MIME systems, which focus on providing task-directed movements. This system focuses on executing exercises slowly with constant velocity, in high repetition numbers to decrease spasticity and increase range of motion of shoulder and elbow joints. BI-MANU-TRACK (REHA-STIM, BERLIN, GERMANY) The Bi-Manu-Track (Fig. 11-4)4 is a commercially available 1 DOF end-effector-based ­system, which uses two motors to enable bimanual flexion and extension of the wrist joints. The system also allows patients to perform exercises to train forearm pronation and supination. The Bi-Manu-Track has three operational modes: passive, bilateral active-assisted and bilateral active-resisted mode. It has been applied for arm training for patients with stroke and Parkinson’s disease (Picelli et al., 2014). ARMin The ARMin robot was designed for arm rehabilitation (Nef et al., 2006). It has 6 DOFs allowing shoulder actuation in 3D, flexion/extension of the elbow, lower arm pronation/supination and wrist flexion/extension. The upper arm of the user is connected to the robot by an end-effector-based structure and the lower arm is connected through an exoskeleton 4 http://www.reha-stim.de/cms/index.php?id=60.

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FIGURE 11-4 Bi-Manu-Track.

structure. It thus has a semi-exoskeletal structure. The ARMin incorporates three modes of operation: (1) passive mobilisation, (2) active game-supported arm therapy and (3) active training of ADL. An audio-visual display illustrates the movement task to the patient (Nef et al., 2006).

Lower Limb Robotic Rehabilitation Systems Gait impairments following neurological disorders such as spinal cord injuries (SCIs) and stroke are often disabling and have a negative impact on quality of life. Therefore recovery of walking is a top priority and considered one of the primary objectives of the rehabilitation process. Allowing wheelchair users to stand and ambulate can influence community mobility, social participation and profoundly combat secondary medical issues associated with lack of weight bearing such as osteoporosis, urinary tract infections and pressure sores (Karimi, 2011). Gait training enables the user to practise walking movements repetitively and in a physically correct manner to induce improvements of motor cortex representations, recover and strengthen the muscle groups and improve coordination (Calabrò et al., 2016). Conventional gait training generally involves exercises on a treadmill with partial body weight support (BWS) and manual assistance of physiotherapists. The main limitation of this treatment is that it is labour intensive, and requires a lot of effort by physiotherapists in assisting the gait of patients, setting the paretic limb and controlling trunk movements (Werner et al., 2002). To overcome these issues, there has been an effort towards applying robotic devices for gait training.

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Robot-assisted gait training has been explored for patients with traumatic brain injury, SCIs, stroke, cerebral palsy, multiple sclerosis and Parkinson’s disease (Calabrò et al., 2016). Robotic exoskeletons are wearable electromechanical devices that have been developed as augmentative devices to enhance the physical performance of the wearer or as orthotic devices for gait rehabilitation or locomotion assistance. These enable users with appropriate physical abilities to stand, walk, climb stairs and perform ADL (Miller et al., 2016). According to the Food and Drug Administration (FDA) a powered exoskeleton is ‘a prescription device that is composed of an external, powered, motorized orthosis used for medical purposes that is placed over a person’s paralyzed or weakened limbs for the purpose of providing ambulation’ (Food and Drug Administration-HHS, 2015). Potential benefits of robotic exoskeletons include: • Increasing user independence. • Secondary benefits such as improved bowel/bladder function, decreased chronic pain, reduced spasticity and increased bone marrow density (Contreras-Vidal et al., 2016). • The reduction of energy required by the user to move joints, i.e., knee, hip and ankle, as this load is taken by the exoskeleton itself. • Providing repetitive, long and intense physiotherapy sessions, yet reducing both therapist burden and healthcare costs (Bruni et al., 2018). • Providing measurements of several kinematic and dynamic parameters of patient limb movement and therefore performance-related indicators (e.g., range of motion, velocity, smoothness) to objectively quantify patient progress (Masiero et al., 2014).    The robotic rehabilitation systems for the lower limbs can be classified into: • Fixed site/stationary and • Mobile/overground walking systems.    At present the range of disabilities that this type of appliance benefits is limited and while used for rehabilitation, they are not yet at a stage where prosthetic limb exoskeletons are used throughout the day for typical daily ambulation. FIXED/STATIONARY SYSTEMS Fixed or stationary exoskeletons systems incorporate a fixed structure combined with a moving ground platform (such as a treadmill or footplates) and aim to automate traditional therapies (Calabrò et al., 2016). They may be treadmill-based or programmable foot end-effector devices. Treadmill-based systems use a robotic orthotic/exoskeleton connected to the patient’s lower limbs together with a body weight system to offload a part of the weight of the patient during the stance phase of the gait, reducing the load needed to be overcome by the patient, and ensuring safety and stability during walking (Bruni et al., 2018). Foot end-effector systems use driven footplates for guiding the feet and simulating the phases of the gait.

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Examples of fixed/ stationary systems include: LOKOMAT (HOCOMA, VOLKETSWIL, SWITZERLAND) The Lokomat (Fig. 11-5)5 is one of the more well-researched stationary robotic systems developed to support and automate treadmill training (Riener et al., 2010). It is a modular device consisting of a powered orthosis/exoskeleton, a suspension system to provide BWS and a treadmill (Mayr et al., 2007). The hip and knee joints are actuated by linear drives integrated into an exoskeletal structure. The system offers 2 DOFs in each leg, enabling hip and knee flexion and extension movements in the sagittal plane (Lunenburger et al., 2004). The patient is fixed to the orthosis with straps around the waist, thighs and shanks and the system can be adjusted to the individual’s anthropometry. During training, the Lokomat moves the patient’s legs through a preprogrammed gait pattern. An augmented feedback module provides feedback to the patient while walking, by projecting the results of the exercises on a display panel to enhance their motivation. LOWER EXTREMITY POWERED EXOSKELETON The Lower Extremity Powered ExoSkeleton (LOPES) was developed at the University of Twente to assist stroke patients in walking rehabilitation and to evaluate motor skills (Veneman et al., 2007). The LOPES is a combination of an exoskeleton robot for the legs and an end-effector robot for the pelvis. It has a 2D pelvic control system and an exoskeleton leg with 4 actuated DOFs assisting in hip flexion/extension, adduction/abduction, knee flexion/extension and ankle flexion/ extension (Low, 2011). It allows forward stepping motions while also maintaining the fundamental instability of standing/walking to allow ‘patient-in-charge’ or ‘robot-incharge’ modes (Veneman et al., 2007). THE GAITTRAINER (REHA STIM, BERLIN, GERMANY) The GaitTrainer (Fig. 11-6)6 is a footplate-based end-effector-based device designed to improve a patient’s ability to walk by repeated practice. In contrast to a treadmill, it consists of two footplates that are positioned on two bars, rockers and cranks to provide propulsion (Masiero et al., 2014). The patient is attached to a harness for BWS and the footplates move the feet along a fixed trajectory. OVERGROUND WALKING SYSTEMS/MOBILE EXOSKELETONS Lower extremity exoskeletons developed for human locomotion assistance are used to help patients who have completely lost mobility in the lower limbs due to conditions such as SCI, multiple sclerosis, etc. These systems offer external torque at the location of human joints to replace the patients’ impaired motor function, enabling them to perform daily movements such as standing up, sitting down and walking (Chen et al., 2016). They can function as assistive and rehabilitative devices. Most of these exoskeletons require the patients to balance themselves and therefore a healthy upper body is required. Compared to stationary systems such as the Lokomat and LOPES, powered robotic exoskeletons are compact, lightweight and portable and can therefore be potentially used at home.

5 http://exoskeletonreport.com/product/lokomat/. 6 http://www.reha-stim.de/cms/index.php?id=76.

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FIGURE 11-5  Lokomat (Hocoma, Switzerland).

Some of the most widely used mobile exoskeleton technologies developed for users who have lower-limb mobility impairments are briefly described next. A summary of the main features of these mobile exoskeletons is given in Table 11-1. A more systematic review of powered exoskeletons for bipedal locomotion can be found in Contreras-Vidal et al. (2016). REWALK (ARGO MEDICAL TECHNOLOGIES LTD, ISRAEL: HTTP://REWALK.COM/)  ReWalk was the first FDA-approved exoskeleton in 2014 to be used as a personal device at home and in the community. It is approved for home use, when accompanied by a specially trained caregiver, for people with paraplegia due to SCIs at levels T7–L5, and for use in rehabilitation centres for patients with SCIs at the T4–T6 level. It contains pairs of electric direct current (DC) motors at the knee and hip joints to enable the user to walk, stand, turn and navigate stairs, and safely manoeuvre sit-to-stand positions. The ankle joint is unactuated and allows passive spring-assisted dorsiflexion. The motors are powered by rechargeable batteries, and an on-board computer system is incorporated in a backpack worn by the user. Sensors located on the user’s chest determine the angle of the torso and measure the shift in gravity and upper body movements to estimate the user’s walking intention. The system is then driven by generating a prescribed hip and knee displacement (Low, 2011; Lajeunesse et al., 2016).

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FIGURE 11-6 GaitTrainer.

Table 11-1  Summary of Main Features of Some Commercially Available Mobile Lower Body Assistive Exoskeletons

Device

Battery Life Maximum (Continuous Speed (m/s) Weight (kg) Walking)

User Height (m)

Maximum User Weight (kg) References

ReWalk Rex Indego

∼0.6 0.06 ∼0.6

23.3 38 12.3

4 h 2 h 4 h

1.6–1.9 1.42–1.93 1.55–1.91

100 100 113

Ekso HAL Atlas

0.89

20.41 23 9

4 h 2 h 40 m –

1.58–1.88 1.5–1.9 0.95–1.4

100 95 40

≤1

http://rewalk.com/faqs/ Gardner et al. (2017) FDA (2017) and Lajeunesse et al. (2016) Lajeunesse et al. (2016) Nitschke et al. (2014) Sanz-Merodio et al. (2014) and Garcia et al. (2014)

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ReWalk requires the wearer to use crutches to maintain balance. Some contraindications to using the ReWalk include: • History of severe neurological injuries other than SCI (multiple sclerosis, cerebral palsy, motor neuron disease, traumatic brain injury, etc.). • Severe concurrent medical diseases: infections, circulatory, heart or lung, pressure sores. • Severe spasticity. • Significant contractures. • Psychiatric or cognitive situations that may interfere with proper operation of the device.    REX (REX BIONICS, NEW ZEALAND)7  REX (Fig. 11-7)8 is an exoskeleton with actuators at the knee, hip and ankle joints. It enables the user to walk and climb stairs. The device is suitable for manual wheelchair users who can self-transfer and operate hand controls. It is suitable for use with patients who have SCIs at levels up to C4/C5 and is also being explored in clinical trials for users with stroke and multiple sclerosis. REX is self-balancing and does not require any additional supportive aids or crutches for balance. The legs of the device cover the user’s leg significantly more than other devices, thereby increasing the bulk of the device. The system is operated using joystick control with a user-friendly interface. There are two versions of REX – REX P (i.e., for personal use and customised to the individual’s size) and an alternative REX, which is designed for use in rehabilitation clinics and is adjustable to fit different users. REX is CE marked in Europe as a Class 1 medical device under the European Medical Device Directive. HYBRID ASSISTIVE LIMB9  The Hybrid Assistive Limb (HAL) is a bilateral lower limb exoskeleton that has been developed for both performance augmentation and rehabilitation purposes. HAL has 3 DOFs for actuating the hip, knee and ankle joints. It is a hybrid system, which allows a voluntary and autonomous mode of operation to support gait training, depending on the treatment purpose and user’s capabilities. Its ‘cybernic voluntary strategy’ is based on estimating the voluntary muscle activity from surface electromyography signals and adjusting joint torques depending on the measured muscle activity (Tsukahara et al., 2010). The second strategy, ‘cybernic autonomous control’, is based on the user’s weight shifting and input from in-shoe force pressure sensors or ground contact forces with the exoskeleton (Bortole et al., 2015). This mode is used in the case of complete loss of voluntary activation of gait muscles. The device is used with a cane for stability during walking. HAL for medical use is CE marked as a medical device.

7 https://www.rexbionics.com/. 8 https://www.rexbionics.com/rex-for-home-use/. 9 Cyberdyne

Inc., Tsukuba, Japan: http://cyberdyne.jp/english/.

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FIGURE 11-7  REX robotic exoskeleton.

EKSO EXOSKELETON10  Ekso is a wearable lower extremity robotic exoskeleton designed for the assistance and rehabilitation of patients with various levels of lower extremity weakness. The system has 3 DOFs in each leg with active hip and knee joints and passive ankle joints. Both legs are connected to a torso structure containing the computer and batteries. The torso is aligned to the user’s lower back, and the exoskeleton legs are fastened to the user’s legs by hook-and-loop fastener straps that align the user’s lower back and joints with those of the device. Two additional straps are tightened over the user’s shoulders to help support the torso structure. The device has powered (bilateral) hip and knee joints and passive (spring) ankle joint movements in the sagittal plane. Currently, Ekso has four walk modes enabling either user or therapist to actuate movements using a push button or gait intention detection by detecting forward and lateral movement of the user’s hips (for weight shifting) or the user’s weight shift and intention of forward leg movement.

10 Ekso

Bionics, Richmond, CA, USA: http://eksobionics.com/.

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Ekso requires the use of crutches to ensure stability and safety of the user. The undersides of the crutches are fitted with force sensors to ensure firm placement on the ground and at least partial weight bearing. A step will therefore not be triggered unless both crutches are firmly on the ground (Contreras-Vidal et al., 2016). This exoskeleton also has a backpack that contains a battery and the control centre. EksoGT is the first robotic exoskeleton to be granted FDA clearance for use with stroke patients. It is approved for: • Individuals with hemiplegia due to stroke. • Individuals with SCIs at levels T4–L5. • Individuals with SCIs at levels T3–C7 (ASIA impairment scale D). • It is CE marked.    INDEGO11  Indego (also known as the Vanderbilt exoskeleton) is a powered lower limb exoskeleton designed to enable people with SCIs to walk and for use as a therapy tool. Indego consists of a hip segment, a right and left thigh segment and a right and left shank segment. The device is strapped to the user around the waist and actuated at the hip and knee joints bilaterally. Each thigh segment is designed with two brushless DC motors, which are used to actuate the hip and knee joints. The system is designed to be used with a standard ankle foot orthosis to support the ankle and prevent foot drop in the swing phase of gait (Lajeunesse et al., 2016). It does not have any exposed cables, can be operated wirelessly using a mobile phone app and does not require a backpack. The Indego incorporates a modular design enabling patients themselves to quickly assemble and disassemble the device. Its total weight is 12 kg, which is relatively light compared to other exoskeletons. The lean nature of the device means the user can wear it while also using a wheelchair. The Indego allows walking, sitting and standing movements but is not intended for sports or stair climbing. For use as a rehabilitative tool, Indego comes with a software application, which displays gait parameters (such as stride length and pace) to aid gait training. Indego has received FDA clearance to perform ambulatory functions for:    • Individuals with SCIs at levels T3–L5 with supervision of a specially trained companion. • Individuals with SCIs at levels C7–L5 to perform ambulatory functions in rehabilitation institutions. • People with hemiplegia as a result of stroke to perform ambulatory functions in rehabilitation institutions. • The Indego is CE marked.   

11 Parker-Hannifin,

Ohio, USA: http://indego.com/indego/en/home.

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ATLAS EXOSKELETON12  The ATLAS (Fig. 11-8) is a wearable exoskeleton designed to provide walking capabilities for children affected by paraplegia, tetraplegia, muscular atrophy and myopathies.13,14 It offers a 6 DOFs mechanism, with 3 DOFs per leg, allowing hip, knee and ankle flexion and extension in the sagittal plane. The structure is attached to the user’s body through comfortable belts. The system requires the use of a supporting frame for postural balance that is attached to the device. Thus there is no need for the user to apply their upper limbs and trunk to control balance during walking. The ATLAS exoskeleton is adjustable for children between the heights of 95 and 140 cm and is able to support a child weighing up to 40 kg (Garcia et al., 2014).

FIGURE 11-8  ATLAS 2030 pediatric wearable gait exoskeleton. NMD, neuromuscular disease. Courtesy of Marsi Bionics.

12 Marsi

Bionics, Spain: http://www.marsibionics.com/.

13 http://www.marsibionics.com. 14 http://www.marsibionics.com/portfolio/atlas-2020/.

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HEI EXOSKELETON15  Researchers at the HEI-YNCREA School of Advanced Engineering Studies have produced a noncommercial rehabilitation exoskeleton specifically focused on children with multiple disabilities. The HEI exoskeleton was started as part of the ‘Motion’ project in 2013 (Wang et al., 2018). The exoskeleton is motorised, presents with 6 DOFs and uses steel wires to animate its junctions (Figs. 11-9 and 11-10). In its first phase, the project aimed to achieve a slow-walking model for children with intermittently straight knees, similar to humans, to avoid sudden, jerky movements, and to minimise stress on the joints. Psychomotor therapy management in children with multiple disabilities is more difficult than for adults. Coupled with an inability to communicate or express the feeling of pain or discomfort, children prove unsuitable subjects in the development of robotic orthotic devices. Because of these safety concerns, Wang et al. made use of the NAO humanoid robot (Fig. 11-11) as an intermediate platform to simulate the straight-knee walking mode in a simulated environment for building and testing the control system of the exoskeleton (Wang et al., 2016). A neural network-based proportional–integral–derivative control system was also explored by Zhang et al. for the HEI exoskeleton, with improved results in a simulated environment over a traditional proportional–derivative controller (Zhang et al., 2015, 2018).

FIGURE 11-9  (A) HEI (Wang et al., 2018) exoskeleton. (B) Joints and structure of exoskeleton. 15 HEI

Lille – School of Advanced Engineering Studies, France: http://www.hei.fr/.

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Their research hopes to control the stability of the exoskeleton in the real world while walking with a human operator.

Socially Assistive Robots Socially assistive robots (SARs), also known as contactless assistive robots, help users through social interaction rather than physical interaction (Zollo et al., 2013). SARs have been developed to provide companionship, improve mental health, reduce stress and may be used to monitor the safety of the vulnerable population (Mordoch et al., 2013). Thus they establish therapeutic efficacy through physiological, psychological and behavioural measures of the user (Chang et al., 2014). There are several categories of SARs, though most technologies overlap between these (Zollo et al., 2013): • Companion robots – such as robotic pets, which are used with the intention of reducing solitude and stress. • Contactless motivating robotic therapists – robots that encourage and assist the user through social interaction, but with no physical intervention. • Assistive robots used for patients with cognitive disabilities – robots that teach the user social skills and assist to transfer these skills to human interactions.   

FIGURE 11-10  HEI (Wang et al., 2018) exoskeleton motors (left). Knee movement mechanism (right).

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FIGURE 11-11  Controllers application of SimMechanics-Simulink on NAO (Wang et al., 2016). (A) full geometric model of NAO in Simmechanics; (B) sub-system model of right leg; (C) simulation of NAO and its exoskeleton in Simulink-Simmechanics; (D) PID controller of hip-pelvis joint of the right leg.

SARs have been used in mental healthcare applications, primarily children with autism spectrum disorder and older adults with dementia. They have been used as therapy aids for children dealing with grief and loss, as social mediators for children with autism and as companions in nursing homes and elementary schools (Feil-Seifer and Matari, 2005). SARs can be designed to have animal-like, machine-like and human-like forms. Many animal and related animal-inspired designs have been used in SAR applications, including dogs, cats, seals and dinosaurs (Rabbitt et al., 2015). In the United States animal-assisted therapy and animal-assisted activities have become widely recognised. Both of these are considered to have three main positive effects: psychological, physiological and social (Bemelmans et al., 2012). However, this type of therapy has its drawbacks, e.g., possible physical risks such as allergy, infection and injury, as well as cost and accessibility. These potential restrictions may be addressed by robots with the physical appearance of animals and the ability to respond to human interaction. Such robots, have been shown to effectively reduce depression and stress (Kachouie et al., 2014). Although SARs enhance the human–human interaction, and have been seen to have an increased interaction with caregivers, it is important to note that currently technologies

Chapter 11 • Robotics  331

Table 11-2  Socially Assistive Robots Robot

Company/Project

AIBO Care-O-Bot CompanionAble Huggable iCAT

Sony Kaplan (2000) Fraunhofer IPA Schaeffer and May (1999) The European FP7 Project CompanionAble (2008–12) Gross et al. (2011) Massachusetts Institute of Technology Santos (2012) EU FP7 ICT-215554 project LIREC German Research van Breemen et al. (2005) Foundation (DFG) within the SFB 673 – Alignment in Communication – Project C2 The Digital Life and Things That Think Consortia Adalgeirsson and Breazeal (2010) Aldebaran-Robotics Gouaillier et al. (2009) National Science Foundation Research Grants BCS Fink (2012) 08-27084 Information Technology Research ITR Program (Grant Pollack (2002) No. 0085796) Intelligent System Co., Ltd Kidd et al. (2006) Socially Intelligent Machines Lab (designed by Carla Geppert (2004) Diana and Meka Robotics) Grant-in-Aid for Scientific Research from Japan Society Mukai et al. (2010) for the Promotion of Science National Science Foundation under Grants IIS-0713697, Fasola and Mataric (2010) CNS-0709296 and IIS-1117279

MeBot NAO Nexi NurseBot Paro QRIO RIBA USC Robot

References

available are not able to replace human care. It is paramount that both SARs and human interaction work hand in hand. If the component of human caregiver interaction is no longer in place, there is a concern over the user’s increased isolation, despite therapeutic benefits (Feil-Seifer and Mataric, 2011). Some of the more popular SARs in research papers are listed in Table 11-2. The Huggable Robot (Santos, 2012) is the creation of the Personal Robots Group, MIT. This robot was designed to look like a teddy bear, as a symbol of comfort for paediatric users. The Huggable has two modes of function: (1) being a fully autonomous robot the Huggable is able to interpret and respond to human interactions with it, and (2) the Huggable is able to work as a semi-autonomous robot avatar, which can be controlled on some level. PARO was created by Takanori Shibata from the Intelligent System Research Institute in Japan (Kidd et al., 2006). It is modelled after a baby harp seal and is programmed to respond to touch using simple sound and movement. PARO is mostly used as a companion robot. Several studies have been conducted particularly on its use with people with dementia. In one study, where PARO was left in the public space of a nursing home, residents saw an increase in social activity through interaction with PARO. To date studies using these SAR devices are generally small scale, i.e., a limited number of participants. However, this is a growing field of research interest.

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Robots for Supporting Activities of Daily Living (ADL) Robots have been developed for providing support with performing daily tasks such as feeding, grooming and lifting by, for instance, power assistance or tremor suppression. An example of this is the Handy 1 robot (Rehab Robotics, UK), which was initially developed in 1987 to assist a child with cerebral palsy to eat. The system can be operated with a single switch. Extensions for the system were later designed to allow it to be used in other applications such as face hygiene and cosmetics (Topping, 2002). Other commercially available feeding support systems include MySpoon (Secom, Tokyo, Japan), NeaterEater (Buxton, UK) shown in Fig. 11-12 and Obi.16–18 The iARM (Exact Dynamics, Netherlands) is a portable robot arm for object manipulation that can be mounted on a wheelchair (Fig. 11-13)19. It weighs 9 kg and can be powered by the user’s wheelchair battery. The system can be controlled by different access methods such as a keypad, joystick or single switch. These types of devices appear to have made limited inroads into the homes of people with disabilities perhaps because of cost, technical or aesthetic reasons (Maciejasz et al., 2014).

Design Considerations for Robotic Exoskeletons The following are important features to consider when designing robotic exoskeletons: Safety: Safety is an important design consideration for exoskeletons. These systems encapsulate the user who may have pathologies resulting in impaired motor control and/or muscle weakness. Safety aspects should be considered in all stages of design, and

FIGURE 11-12 (Left) NeaterEater robotic feeding device. (Right) MySpoon robotic feeding device.

16 https://meetobi.com/. 17 http://www.neater.co.uk/neater-eater-2-2/. 18 https://www.secom.co.jp/english/myspoon/. 19 http://www.exactdynamics.nl/site/?page=pictures&id=3.

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FIGURE 11-13  iARM used for making a phone call.

measures should be incorporated at the software (control), hardware and operator levels (Beyl et al., 2009; Roderick and Carignan, 2005). Roderick and Carignan (2005) suggest the following potential hazards in the use of exoskeletons (Roderick and Carignan, 2005): • Moving the patient beyond the safe limit of their range of motion. • Moving the patient at an excessive velocity – sudden movement from the device may provide muscle strain leading to further injuries. • Applying an excessive torque to the patient or having the patient apply an excessive torque against the robot.    Parameters, such as operational velocities and interactive pressure, should be measured in real time, and safety constraints and control strategies should be in place to ensure the user’s stability and safety in an emergency (Huo et al., 2016). A common approach to ensure safety is to incorporate multiple safety features (Van der Loos and Reinkensmeyer, 2008). Exoskeletons are designed with passive safety features, such as having no sharp edges, mechanical end stops to prevent joints from exceeding the anatomical range of motion of the human limb, and emergency switches to turn off the robot (Saba et al., 2013; Nef et al., 2006). The mechanical stops should be able to withstand the maximum

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torque that the actuators can apply. Additional sensors can be included to detect the malfunctioning of other sensors and implement a safe protocol. Overall, the system should be fail safe, meaning it should be able to achieve a safe state in the presence of a detected fault. When a fault is detected, the exoskeleton should either stop motion and hold the current position, or remove power to the motors (Roderick and Carignan, 2005; Baniqued et al., 2015). Safety features that can also be incorporated in the software include current and speed monitoring, collision detection, routines to interrupt the power supply to the motors, software checks to limit forces, motions and speeds and user adjustments to control parameters, as well as checks for sensor health and other dangerous situations (Nef et al., 2006; Van der Loos and Reinkensmeyer, 2008). It should also be possible for the robot to be moved manually by a therapist to release the patient from a potentially uncomfortable or dangerous position (Nef et al., 2006). This can be achieved by using backdrivable hardware (Babaiasl et al., 2015). Achieving both high-force production capability and backdrivability is an engineering challenge in rehabilitation robots. Biomechanical function: Exoskeletons are wearable devices that operate mechanically on the human body, with possible interference and friction with limb natural movement (Bruni et al., 2018). Therefore an understanding of the biomechanics of the joints and the biomechanics of human walking is essential in the design of exoskeletons for the lower limbs (Dollar and Herr, 2008; Low, 2011). Although robotic joints are generally designed to mimic human joint kinematics in terms of structure, range of motion and DOFs, the complex nature of human joints means that robotic joints tend to be simplified. This can lead to low kinematic compatibility between the human and robotic joint causing unwanted interaction forces between the human and exoskeleton. However, increasing the complexity of the joint may lead to increased costs and reduce the reliability of the system. Similarly, a high number of DOFs allow a wider variety of movements, with many anatomical joint axes involved (Nef et al., 2006). However, trade-offs exist between the numbers of DOFs to provide the range of requirement movements and the size, weight and cost of the device. The human leg can be approximated into a structure with a total of seven DOFs: three rotational DOFs at the hip, three at the ankle and one at the knee (Calabrò et al., 2016). The upper limb effectively has a total of nine DOFs, excluding the finger joints. Ideally, the exoskeleton should be kinematically compatible with the human joint while still providing satisfactory functionality (Low, 2011). The hip, knee and ankle are weight-bearing joints, which rely on sufficient muscle force for stability. Mobile medical exoskeletons should therefore provide sufficient external joint moment to compensate the lack of forces in these joints and also provide BWS to minimise the weight loaded on these joints (Low, 2011). The user should not feel the weight of the robot. The robot must be capable of generating sufficient force to move a patient’s limb, and they should be able to move the device easily. Autonomy/shared control: A shared control system must have the ability to determine the user’s intention, verify that the desired action to be performed is safe, and when appropriate be able to adjust the control signal to manoeuvre the device safely and efficiently (Carlson and Demiris, 2012). In essence, this is a division of labour between the user and

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the robot. However, the user has power to determine the level of robotic aid they would require. The system should be able to goal orientate itself in accordance with the user’s intention, and be able to modify these goals in parallel with those of the user. The degree of autonomy of the robot is an important consideration in the design process so as not to reduce the user’s independence or dignity, but rather assist and support, thus giving the user the higest possible level of control over the robot. A study exploring the effects of different levels of autonomy on the user found that the higher the autonomy of the robot, the less satisfied the user was with the system (Kim et al., 2012). Adaptability: It is important that the robotic exoskeleton can be adapted to fit people with differences in gender, size, limb segment lengths, joint range of motion, etc. Therefore consideration of human anthropomorphic data is key. Exoskeletons usually incorporate adjustable frames to account for the different anatomical profiles of users (Baniqued et al., 2015). Motivation: Evidence suggests that therapy with an emphasis on ADL increases patient motivation and results in improved therapeutic outcomes compared with single joint movements (Nef et al., 2006; Langhammer and Stanghelle, 2000; Chan et al., 2006). Motivational factors also contribute to a patient’s active participation during therapy. An effective way of increasing motivation is to use games as part of the exercises during therapy. Virtual games are an engaging way to provide feedback to the patient in the form of visual, haptic, acoustic media. Flexibility and usability: Though users may have particular disabilities, their requirements may vary based on their abilities and preferences. Usability is a highly important variable within the design of robotic devices. The device should be customisable and user friendly. This includes the ease with which the system is set up and the time it takes. The interface with which the user interacts must be as simple as possible while also being intuitive (Babaiasl et al., 2015). Costs: Currently, the costs of robotic devices are quite high and cater to only a small population of users who are able to afford such devices, unless government funded or subsidised. High device costs are especially apparent when users have more complex or specialised requirements which are not met by more generic devices (Garcia et al., 2013). Some possible cost-cutting strategies while designing assistive robots are: • Hardware design using readily available components on the market. • Trade precision for robustness. • Reduce complexity of the mechanical design of the system, i.e., add on more functionality to sensors and software design (Meng and Lee, 2006).    Aesthetics and portability: Portability of the device is a major factor that limits the application of robotic exoskeletons outside of clinical therapy (Dollar and Herr, 2008). Increasing the aesthetic value of a rehabilitation device makes patients more relaxed and willing to use the device (Baniqued et al., 2015). The physical interface to the user: The design of the physical interface to the user is important as this affects the transfer of mechanical power from the robotic exoskeleton to the user. Exoskeletons are generally attached to a user using padding and straps. The interface should be comfortable and provide good support to the user to prevent

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injuries. It should be customisable to an individual’s own contours and anatomical needs (Chen et al., 2016). The contact method, contact intensity and contact areas on the body should be considered in the design. The interface should also ideally tap into the user’s residual capabilities. Control strategies: The strategies that have been employed for controlling robotic ­exoskeletons are conventional control, intuitive control and biosignal integration control. Typically, exoskeletons are controlled using conventional systems such as joysticks, buttons, steering wheels and touchscreens. To develop the exoskeleton to function with more accuracy to user intent, intuitive control becomes important – this is where the user is able to control the device with use of motion, gesture, eye movement and force. Actuation mechanisms: Ideally, the robotic exoskeleton should generate natural movements of the limb with the wearer not subjected to any vibration, jerk or sudden motion change. The choice of actuator has a significant effect on the performance of robots in terms of the generated output force/torque, efficiency and portability (Huo et al., 2016). For the active joints of lower limb exoskeletons, actuators with a small volume, a high power-to-weight ratio, high efficiency and compliance are needed (Chen et al., 2016). Current actuator mechanisms used in robotic exoskeletons are: 1. Electric motors – these are the most widely used due to their relatively high power output; they are easy to power through portable rechargeable batteries and can be controlled by analog or digital input signals from a control circuitry system (Maciejasz et al., 2014). 2. Pneumatic actuators – these are powered by compressed air. They are lighter than electric actuators and have lower inherent impedance but are harder to control due to their nonlinear nature. Since they require pressurised air, the overall size of the system is increased by the size of the compressor. Pneumatic actuators are suitable in applications where the system remains stationary (Weightman et al., 2014). 3. Hydraulic actuators – these are powered by hydraulic pressure. They have a high torque output and are very sensitive and responsive (Maciejasz et al., 2014). However, their weight, predisposition to fluid leakages and larger size makes them less favourable choices for robotic rehabilitating applications (Gopura et al., 2011). Due to their high power output-to-weight ratio, hydraulic and pneumatic actuators are generally suitable for exoskeletons for human performance augmentation (Huo et al., 2016). 4. Pneumatic muscle actuators (PMAs) – these actuators are commonly used and consist of a rubber inner tube surrounded by a braided mesh shell with flexible, but nonextensible, threads. When the inner tube is pressurised it expands in a balloonlike manner but the expansion is constrained by the braided shell (Tsagarakis and Caldwell, 2003). As the volume of the inner tube increases with the increase in pressure, the pneumatic muscle shortens and/or produces tension if it is coupled to a mechanical load. Due to such physical configuration, PMAs have generally lower weight compared to other actuators, but also have slow and nonlinear dynamic

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response. In addition, PMAs can only generate a tension force through contraction; therefore at least two actuators are often used for each DOF to provide antagonistic movements like natural skeletal muscles (Huo et al., 2016). The pneumatic muscles are compliant and well known for their exceptionally high power and force-toweight/volume ratios, which make them attractive for use in rehabilitation robots (Yeh et al., 2010). 5. Series elastic actuators (SEAs) – SEAs place an elastic component between the power source and the output shaft. By measuring the deflection of the elastic component, the output force is then measured based on Hooke’s law. It decreases the inertia and intrinsic impedance of the actuator, allowing a more accurate and stable force control in unconstrained environments and thereby increases patient safety (Maciejasz et al., 2014; Huo et al., 2016).

Roboethics Robot ethics or roboethics is an area of study which aims to understand the ethical implications and consequences of robotic technology (Scheutz, 2013). The basis of roboethics are the laws of robotics, written by the author and scientist Isaac Asimov. In his publication (Asimov, 1950), he defined the ‘laws of robotics’ as: • First Law: A robot may not harm a human being or, through inaction, allow a human being to come to harm. • Second Law: A robot must obey the orders given to it by human beings, except where such orders would conflict with the First Law. • Third Law: A robot must protect its own existence as long as such protection does not conflict with the First or Second Laws. • Fourth Law (Law Zero): No robot may harm humanity or, through inaction, allow humanity to come to harm.    Though at the time the ‘laws’ were conceived these technologies seemed far-fetched, the current status of robotic technology is closer to what Asimov had envisaged. Murphy and Woods (2009) suggest that Asimov’s laws are based on functional morality, which assumes that robots have (or will have) sufficient agency and cognition to make moral decisions (Murphy and Woods, 2009). Morality can be defined as the ability to distinguish between what is right and what is wrong. Asimov’s laws assume that robots behave as if they were people. However, it is humans who design and use the robots who must be subject to any law and the ultimate responsibility for ensuring robots behave well must always lie with human beings (Boden et al., 2017). In the field of assistive technology, the area of roboethics is particularly important to address for the safeguarding of patients. There have been ongoing debates surrounding the topic of the ethical implications of the anthropomorphism of robots (Alsegier, 2016). The application of robotics is still in its early stages and hence understanding the consequences it has to society is also developing.

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For a machine to be classified as intelligent it needs to draw from human concepts such as autonomy, consciousness, learning, free will and decision-making. Autonomy is defined as the ability required for carrying on successful activities (Amigoni and Schiaffonati, 2005). Robotics is steadfastly heading toward the replication of an intelligent and autonomous being. It is argued that the more autonomy a robot or machine is allowed, there is an increasing need for it to abide by a set of principles that are compatible with a socially aligned moral code. New technology must meet certain requirements to be accepted. This includes legal, social and global considerations. The concern is that there is no centralised system to establish responsibility for ensuring these requirements are in place. According to Alsegier (2016), when a robot incurs a technical problem causing harm to the individual using it, various questions arise: Who becomes the responsible party in this event? Who is responsible for the ethical implications? Is it a possibility that the robot itself is held responsible? Is the engineer who developed the robot responsible? Is the company or the government who allowed the use of the robot the responsible party? Other concerns also exist when considering robots in human environments: • Robots replacing humans could bring an increase in human unemployment, and thereby possibly increase socioeconomic problems. • Psychological problems may be caused due to problems with attachment to other humans, and further in the future when robots are posited to anthropomorphise, possible confusion between what is real and what is robotic.    The need for a centralised protocol is required. Alsegier suggests a set of solutions for the future (Alsegier, 2016): 1. The creation of limitations and laws which would be applied to the development and control of robots. A part of this would be making the content of robotic research available to the public, and scientists would take it as their responsibility to inform and educate the public on the uses of any new robots, and clearly state what the short-term and long-term effects of use would be. 2. Any humanoid robots (including SARs) would have to pass a series of tests and would be evaluated by ‘neutral’ scientists who would be able to assess any technical issues the user may face when using the robot. Due to the human-like nature of these devices, it was suggested that sociologists should be involved to understand the effects on people’s behaviour and be part of the review process for new products, ensuring there are no damaging effects to society. 3. The final stage of testing comes under the jurisdiction of the government. It would be their responsibility to clearly state the legal liabilities involved in the development of new robotics. 4. A universal set of rules in the production of intelligent robots would include ethical responsibilities and safety considerations.

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Future of Robotics There have been a large number of assistive robots developed over several decades, but only a minority of these is commercially available, with the majority still in the research and development phase. It is evident that assistive robotics is an area which is rapidly progressing, but is still in need of considerable development. To date, the financial advantage of applying robotic systems for rehabilitation purposes has not been demonstrated. In addition to this, factors such as lack of clinical evidence, limited functionality, safety concerns, equipment size and usability issues have most likely inhibited them from being adopted in clinical settings or in homes (Van der Loos and Reinkensmeyer, 2008; Babaiasl et al., 2015). Progress needs to be specially made in making widespread availability of low-cost robotic devices. Zollo et al. (2013) outlined four main challenges in the development and widespread use of assistive robotic technology: 1. Developing standardised research tools and objectively measured outcomes to evaluate robotic systems from the user’s standpoint. 2. Conducting more user trials for the device in ‘natural’ environments to assess device safety, reliability, efficacy and acceptability. 3. Improving the synergy between clinicians and technology to enable the technology to be adopted in clinical settings. This would have the potential to allow users increased independence and reduce the burden on caregivers. 4. Promote communication with the industry to share robotic developments and allow their integration in commercial systems.    Ideal future robotic assistive technologies would concurrently overcome these challenges and fulfil the ethical requirements as suggested by Alsegier (2016). In the area of robotic exoskeletons for gait, areas where further research would benefit include walking performance characterisation, reduction in the metabolic energy expenditure of the user while wearing the device, alternative access to devices and development of efficient and lightweight power supplies, actuators and transmission mechanisms (Weightman et al., 2014; Chen et al., 2016; Dollar and Herr, 2008). For mobility purposes, most robotic exoskeletons for gait assistance use batteries as a power source. Limited by current battery technology, the weight of the battery pack of an exoskeleton system is usually heavy. The energy efficiency of exoskeletons needs to be improved to prolong operation time. The price of assistive robots is a challenging issue. Existing systems are beyond the financial reach of most people with mobility disorders. Research efforts should focus on developing systems that are affordable. With improvements in robotics and mechatronics technologies, the price of high-performance actuators and sensors could potentially decrease, making the exoskeleton systems more affordable. Increased evidence of their efficacy in the rehabilitation of users with specific clinical conditions would ensure these devices target the appropriate client groups.

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Gross, H.-M., Schroeter, C.H., Mueller, S., Volkhardt, M., Einhom, E., Bley, A., et al., 2011. I’ll keep an eye on you: home robot companion for elderly people with cognitive impairment. In: 2011 IEEE International Conference on Systems, Man, and Cybernetics. IEEE, pp. 2481–2488. Harwin, W.S., Rahman, T., Foulds, R.A., 1995. A review of design issues in rehabilitation robotics with reference to North American research. IEEE Transactions on Rehabilitation Engineering 3 (1), 3–13. Hersh, M.A., Johnson, M.A., 2008. Disability and assistive technology systems. In: Assistive Technology for Visually Impaired and Blind People. Springer, London, pp. 1–50. Available at: http://link.springer. com/10.1007/978-1-84628-867-8_1. Hillman, M., 2004. Rehabilitation robotics from past to present – a historical perspective. In: Bien, Z.Z., Stefanov, D. (Eds.), Advances in Rehabilitation Robotics. Springer Berlin Heidelberg, Berlin, pp. 25–44. Available at: http://link.springer.com/10.1007/10946978_2. Ho, S., et al., 2011. Hand Rehabilitation Robot using Electromyography. Hogan, N., et al., 1992. MIT-MANUS: a workstation for manual therapy and training. I. In: [1992] Proceedings IEEE International Workshop on Robot and Human Communication. IEEE, pp. 161–165. Huang, V.S., Krakauer, J.W., 2009. Robotic neurorehabilitation: a computational motor learning perspective. Journal of NeuroEngineering and Rehabilitation 6 (1), 5. Available at: http://jneuroengrehab. biomedcentral.com/articles/10.1186/1743-0003-6-5. Huo, W., Mohammed, S., Moreno, J.C., Amirat, Y., 2016. Lower limb wearable robots for assistance and rehabilitation: a state of the art. IEEE Systems Journal 10 (3), 1068–1081. Kachouie, R., Sedighadeli, S., Khosla, R., Chu, M.T., 2014. Socially assistive robots in elderly care: a mixedmethod systematic literature review. International Journal of Human-Computer Interaction 30 (5), 369–393. Kaplan, F., 2000. Talking aibo: first experimentation of verbal interactions with an autonomous four-legged robot. Learning to Behave: Interacting Agents Cele-Twente Workshop on Language Technology 57–63. Karimi, M.T., 2011. Evidence-based evaluation of physiological effects of standing and walking in individuals with spinal cord injury. Iranian Journal of Medical Sciences 36 (4), 242–253. Kidd, C.D., Taggart, W., Turkle, S., 2006. A sociable robot to encourage social interaction among the elderly. In: Proceedings 2006 IEEE International Conference on Robotics and Automation, 2006. ICRA 2006. IEEE, pp. 3972–3976. Kim, D.J., Hazlett, R., Culver-Godfrey, H., Rucks, G., Cunningham, T., Protee, D., et al., 2012. How autonomy impacts performance and satisfaction: results from a study with spinal cord injured subjects using an assistive robot. IEEE Transactions on Systems, Man, and Cybernetics - Part A: Systems and Humans 42 (1), 2–14. Krebs, H.I., Hogan, N., Volpe, B.T., Aisen, M.L., Edelstein, L., Diels, C., 1999. Overview of clinical trials with MIT-MANUS: a robot-aided neuro-rehabilitation facility. Technology and Health Care: Official Journal of the European Society for Engineering and Medicine 7 (6), 419–423. Krebs, H.I, Volpe, B.T, 2013. Rehabilitation robotics. Handbook of Clinical Neurology 110, 283–294. http:// doi.org/10.1016/B978-0-444-52901-5.00023-X. Kurfess, T.R., 2005. Robotics and Automation Handbook. CRC Press. Lajeunesse, V., Vincent, C., Routhier, F., Careau, E., Michaud, F., 2016. Exoskeletons’ design and usefulness evidence according to a systematic review of lower limb exoskeletons used for functional mobility by people with spinal cord injury. Disability and Rehabilitation: Assistive Technology 11 (7), 535–547. Langhammer, B., Stanghelle, J.K., 2000. Bobath or Motor Relearning Programme? A comparison of two different approaches of physiotherapy in stroke rehabilitation: a randomized controlled study. Clinical Rehabilitation 14 (4), 361–369. Leblanc, M., Leifer, L., 1982. Environmental control and robotic manipulation aids. Engineering in Medicine and Biology Magazine 1 (4), 16–22.

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Lo, H.S., Xie, S.Q., 2012. Exoskeleton robots for upper-limb rehabilitation: state of the art and future prospects. Medical Engineering and Physics 34 (3), 261–268. Lo, A.C., Guarino, P.D., Richards, L.G., Haselkorn, J.K., Wittenberg, G.F., Federman, D.G., et al., 2010. Robotassisted therapy for long-term upper-limb impairment after stroke. New England Journal of Medicine 362 (19), 1772–1783. Available at: http://www.nejm.org/doi/abs/10.1056/NEJMoa0911341. Low, K.H., 2011. Robot-assisted gait rehabilitation: from exoskeletons to gait systems. In: 2011 Defense Science Research Conference and Expo (DSR). IEEE, pp. 1–10. Lum, P.S., Bugar, C.G., Van der Loos, M., Shor, P.C., Majmundar, M., Yap, R., 2005. The MIME robotic system for upper-limb neuro-rehabilitation: results from a clinical trial in subacute stroke. In: 9th International Conference on Rehabilitation Robotics, 2005. ICORR 2005. IEEE, pp. 511–514. Lunenburger, L., Colombo, G., Riener, R., Dietz, V., 2004. Biofeedback in gait training with the robotic orthosis Lokomat. In: The 26th Annual International Conference of the IEEE Engineering in Medicine and Biology Society. IEEE, pp. 4888–4891. Maciejasz, P., Eschweiler, J., Gerlach-Hahn, K., Jansen-Troy, A., Leonhardt, S., 2014. A survey on robotic devices for upper limb rehabilitation. Journal of NeuroEngineering and Rehabilitation 11 (1), 3. Available at: http://jneuroengrehab.biomedcentral.com/articles/10.1186/1743-0003-11-3. Masiero, S., Marco, L., Morone, G., 2014. The value of robotic systems in stroke rehabilitation. Expert Review of Medical Devices 11 (2), 187–198. Available at: https://www.researchgate.net/profile/ Giovanni_Morone/publication/259987079_The_value_of_robotic_systems_in_stroke_rehabilitation/ links/0c960531977a13d789000000/The-value-of-robotic-systems-in-stroke-rehabilitation.pdf. Mayr, A., Kofler, M., Quirbach, E., Matzak, H., Frohlich, K., Saltuari, L., 2007. Prospective, blinded, randomized crossover study of gait rehabilitation in stroke patients using the lokomat gait orthosis. Neurorehabilitation and Neural Repair 21 (4), 307–314. Mehrholz, J., Hadrich, A., Platz, T., Kugler, J., Pohl, M., 2012. Electromechanical and robot-assisted arm training after stroke: updated review. Stroke 43 (12), e172–e173. Available at: http://stroke.ahajournals. org/cgi/doi/10.1161/STROKEAHA.112.674226. Meng, Q., Lee, M.H., 2006. Design issues for assistive robotics for the elderly. Advanced Engineering Informatics 20 (2), 171–186. Miller, L., Zimmermann, A., Herbert, W., 2016. Clinical effectiveness and safety of powered exoskeletonassisted walking in patients with spinal cord injury: systematic review with meta-analysis. Medical Devices: Evidence and Research 455. Available at: https://www.dovepress.com/clinical-effectivenessand-safety-of-powered-exoskeleton-assisted-walk-peer-reviewed-article-MDER. Moe, M.L., Schwartz, J.T., 1972. Control of the rancho electric arm. In: Proceedings of the December 5–7, 1972, Fall Joint Computer Conference, Part II on - AFIPS ‘72 (Fall, Part II). ACM Press, New York, New York, USA, p. 1081. Moran, M.E., 2007. Evolution of robotic arms. Journal of Robotic Surgery 1 (2), 103–111. Available at: http:// link.springer.com/10.1007/s11701-006-0002-x. Moravec, H.P., 1983. The Stanford Cart and the CMU rover. Proceedings of the IEEE 71 (7), 872–884. Mordoch, E., Osterreicher, A., Guse, L., Roger, K., Thompson, G., 2013. Use of social commitment robots in the care of elderly people with dementia: a literature review. Maturitas 74 (1), 14–20. Mukai, T., Hirano, S., Nakashima, H., Kato, Y., Sakaida, Y., Guo, S., Hosoe, S., 2010. Development of a nursing-care assistant robot RIBA that can lift a human in its arms. In: 2010 IEEE/RSJ International Conference on Intelligent Robots and Systems. IEEE, pp. 5996–6001. Murphy, R., Woods, D.D., 2009. Beyond Asimov: the three laws of responsible robotics. IEEE Intelligent Systems 24 (4), 14–20. Nef, T., Mihelj, M., Colombo, G., Riener, R., 2006. ARMin - robot for rehabilitation of the upper extremities. In: Proceedings 2006 IEEE International Conference on Robotics and Automation, 2006. ICRA 2006. IEEE, pp. 3152–3157.

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Index Note: ‘Page numbers followed by “f” indicate figures and “t” indicate tables.’ A Accent 1400, 111, 112f Acquired brain injury (ABI), 36 infection, 17 postinfective, 17 trauma, 17 Acquired cognitive impairment, 29–30 Acquired disorders, 29 Action potentials, 7 Alan’s case study (adult) key assessment data, 75 physical assessment, 75–76 postural management goals, 76 recommendations, 76 seating requirements, 76 social/environmental/psychological, 75 Alice’s case study, 118 Alimentary nervous system, 8 Alphabetical organisation, 191 Alternative and augmentative communication (AAC) activity, 196 alphabetical organisation, 191 ARASAAC symbols, 184 assessment, 193–197 body functions, 194–196 classifications, 188f classifying, 187–189 commercially available, 188 communicative competence. See ­Communicative competence components, 189–193 custom/bespoke systems, 188 defining, 187–189 direct access, 189 environmental factors, 196–197 evidence-based practice (EBP). See Evidence-based practice (EBP)

grammatical organisation, 191 graphic symbols, 185f hearing, 195 high-tech, 187–188, 188f history, 182–186 importance, 186 indirect access, 189 input methods, 189–190 intellectual function, 195 International Society for Augmentative and Alternative Communication (ISAAC), 184–186 language processors, 190–192 low-tech, 187–188, 188f mobility, 195 modified mainstream technologies, 188 Mulberry symbol, 184 multifunctional devices, 183 ocular motor function, 194–195 output methods, 192–193 participation, 196 personal computer (PC) technologies, 184 personal factors, 197 physical abilities, 195 Picture Communication symbols, 184 posture, 195 prevalence of need, 186–187 receptive and expressive communication, 187 receptive/expressive communication, 187 receptive language abilities, 195 representation method, 188 schematic organisation, 191 selection sets, 188, 190–192 service delivery, UK, 202–204 England, 202–203 Northern Ireland, 204 Scotland, 203 Wales, 204

347

348 INDEX

Alternative and augmentative communication (Continued) speech and oromotor function, 194 structure, 194–196 unaided, 187–188, 188f United States and the Education Act (1981), 182 vision, 194–195 visual function, 194–195 Widget Literacy symbols, 184 Alzheimer’s, 22 Amyotrophic lateral sclerosis, 23–24 Anterior pelvic tilt, 69–70, 69f Anterior superior iliac spine (ASIS), 67 Anticipatory awareness, 31 Anticipatory postural adjustments, 61 ARASAAC symbols, 184 ARMin robot, 318–319 Assessment team, 88–90, 89t Assessment time, 91–93 Assisted living (AL) active support of lifestyle, 241 automation, 236–239 control layout flexibility, 237 design adaptability, 237 selectivity, 238–239 carer support, 242–244 definition, 216–217 design, 253 internet, 250–251 lifestyle monitoring systems (LMS), 242 random controlled trial (RCT), 245–246 safety monitoring, 239–241 implicit capabilities, 239 standalone monitoring system, 240 Smart Homes, UK AID house, 226–227 Bath Institute of Medical Engineering (BIME), 231–232 Cambus Smart Cottage, 230–231 Cedar Foundation, 233 CUSTODIAN, 228–230 Hereward College, 234 iCue system, 235–236, 236t Intelligent and Green (INTEGER), 226 John Grooms Housing Association, 232–233

Manchester Methodist Housing Association, 234 Millennium Homes Project, 234–235 personal digital assistants (PDAs), 230 Wigton Smart Home, 227–228 York Smart Flat, 227 technology, 218–225 BACnet, 221–222 Bluetooth, 224–225 bus, 219 CEBus, 222 EnOcean, 224 HomePlug, 223 Internet Protocol, 225 ISO OSI model, 219 KNX, 219–221 LonWorks, 221 OSGi, 225 Powerline technologies, 222 radio frequency, 223 TDC2000 system, 218 Thread, 225 X10 system, 222 Zigbee, 224 Z-wave, 223–224 telecare, 244–246 Europe, 248–250 telehealth, 246–248 Europe, 248–250 Whole Systems Demonstrator (WSDAN), 245–246 Assistive technology (AT), 149–150 access model, 106–107, 107f assessment and provision of, 83–85 assessment models matching person to technology (MPT), 87 objective need, 85 physical skills, 88 provision process, 86 statutory service, 87 subjective need, 85 assessment team, 88–90 assessment time, 91–93 definitions, 82 follow-ups and reviews, 95–96

INDEX  349

integration/accessibility Chris’s case study, 298 James’s case study, 304–305 John’s case study, 308–309 Pauline’s case study, 306 Selina’s case study, 291 need for, 82–83 outcome measures for functional independence measure, 99 goal attainment scaling, 99–100 individually prioritised problem assessment, 97 International Classification and Function (ICF), 96–97 psychological impact of assistive devices scale, 98 therapy outcome measures system, 98 user evaluation of satisfaction with assistive technology, 98 physical skills, 93–94 referral forms information gathered, 90, 91t ‘reason for referral’, 90 services, 91 sensory skills, 94–95 Assistive Technology Industry Association, 84–85 Asymmetrical tonic neck reflex (ATNR), 59 AT. See Assistive technology (AT) Ataxia telangiectasia, 16 Attention cocktail party effect, 37 ‘content-free’ cueing, 39 goal-dependent sustained/ switching, 38–39 scheduling software, 38 working memory capacity, 37 Augmentative and Alternative Communication (AAC), 83 Automated verbal instructions, 32 Autonomic nervous system, 8 B BACnet, 221–222 Barrie’s case study, 114–115 Basal ganglia, 56

Basic neurosciences basic neurophysiology, 7 blood supply, 6–7, 6f central nervous system, 3–6, 3f, 5f, 8–10 impairment function and participation, 2 motor system, 10–14 specific conditions, 14–25 Bath Institute of Medical Engineering (BIME), 231–232 Becker’s muscular dystrophy, 25 Bi-Manu-Track, 318, 319f Blood supply embryological development, 6, 6f immature and fragile, 6 Bluetooth, 224–225 Bluetooth keyboards, 113 Brain-computer interfaces (BCI), 145 Brain, functional areas forebrain, 8 hindbrain, 8 midbrain, 8 Brain stem, 10, 56 Broca’s area, 10 C Cambus Smart Cottage, 230–231 Carer support, 242–244 CEBus, 222 Cedar Foundation, 233 Central nervous system (CNS), 8–10, 8f caudal neuropore, 3–4 cell type, 3 complexity, 12 contralateral, 4 embryology of, 3, 3f fMRI pathway differentiation, 5, 5f grey matter, 4 ipsilateral, 4 postural control systems, 56, 57f rostral neuropore, 3–4 white matter, 4 Central pattern generators, 10–11 Cerebellum, 57 Cerebral palsy (CP) antenatal, 14 basal ganglia damage, 15

350 INDEX

Cerebral palsy (Continued) pattern of movement disorder, 15 perinatal, 14 postnatal, 15 risk factors and causes, 14 Cerebrovascular haemorrhagic strokes, 18 Cerebrum, 56 Chloe’s case study, 129 Chris’s case study cognitive load, 299 environmental considerations, 299 factors, 298–300 individual considerations, 298–299 input ability, 299 integrator considerations dedicated integrator unit/ device-switching model, 301, 302f–303f, 302t failure mode, 299–300 models of integration, 300–309 mode switching, 300 primary/secondary pass-through model, 301, 303f, 304t wheelchair as base model, 301–305, 304f, 305t wheelchair systems, 300 Circle of Willis, 12, 13f Coded access, 111 Cognitive impairment, 28 acquired disorders, 29 attention, 37–39 diagnosis, 29 executive functioning, 33–35 implications for benefit, 40–41 children and young people, 44 ethical approaches to cognitive support, 44–45 lack of personalisation, 42–44 reference and stigma, 41–42 Technology Acceptance Model (TAM), 39–40 memory, 35–36 neurodevelopmental disorders, 29

neuropsychological factors impaired self-awareness, 31–32 motivation, 32 plasticity, 33 specific vs. generalised cognitive impairment, 30–31 Cognitive reserve, 33 Communicative competence communication partners, 199 definition, 199 linguistic competence, 198 operational competence, 198 social competence, 198 strategic competence, 199 Compact keyboards, 115–116, 115f Compensatory postural adjustments, 61, 62f Computer-based operating system adjustments, 171–172 access options, 172 display options, 171 keyboard options, 172 mouse settings, 171 speech recognition, 172 Computer gaming, 173 Control interface optimum nature and design, 108 range of, 107–108, 108f Controlled appliances, 157–159 Control site, 107 Control transmission signals, 156 Convention on the Rights of Persons with Disabilities (CRPD), 82–83 Corpus callosum, 10 Cortical adaptive system, 11 Cursor control methods, 170–173, 172f CUSTODIAN, 228–230 Custom-made iPad keyguard, 115, 116f D Degrees of freedom (DOFs), 312 Dementia, 22 Dendrites, 7 Descending inhibition, 11 Developmental cognitive impairment, 29–30 Device, 107

INDEX  351

Diagnostic and Statistical Manual for Mental Disorders (DSM), 29 Direct selection, 110–111 Double clicking, 124 Dragging, 124, 124f Duchenne’s muscular dystrophy, 25, 110 Dwell Select, 123–124 Dyslexia, 30–31 Dystonia, 58 E Easy Cat Touchpad, 128, 128f EC controller unit, 155–159 controlled appliances, 157–159 control transmission signals, 156 feedback signals, 156–157 IR-controlled telephones, 157, 158f lighting control, 159 modulation, 156–157 mounting and stands, 159, 160f processing, 156–157 specialist EC peripheral interface units (SPIUs), 157, 158f, 159 Ectoderm, 3 Ekso, 325–326 Electrical signals, 7 Embryonic blood supply, 6 Endoderm, 3 EnOcean, 224 Enteric nervous system, 8 Environmental control systems (ECS) assistive technology (AT), 149–150 computer technologies alternative access, 169–173 computer-based operating system adjustments, 171–172 computer gaming, 173 cursor control methods, 170–173, 172f tablet-based operating system adjustments, 172–173 text entry methods, 169–170 controller mode of operation, 159–164 multidirectional-proportional input, 163 multiple-switch input, 163 single switch scanning access. See Single switch scanning access

single switch with temporal control, 162 speech recognition input, 163–164 two switch-user advanced scanning, 162 definition, 151 EC provision assessment domains, 174–176 appliance control, 178 environmental, 175 equipment and technology, 175 equipment specification, 176 internet access, 178 operational aspects, 176–178 patient related, 174 position and orientation mounting, 178 profiling bed/chair control, 177–178 qualitative indicators, 179 risk management, 176–178 social situation, 174 summoning assistance, 177 equipment, 151 functions, 152–153, 153f historical development, 164–169 computer-based EC controllers, 167–168, 167f Fifth Generation, 168–169 First Generation, 1960, 164, 164f Fourth Generation, 2000, 165–167, 166f hardwired fixed installation systems, 165 internet, 168–169 portable controller systems, 165–167, 166f remote transmission, 165–167 Second Generation, 1980, 164f, 165 Third Generation, 1990, 165–167 NHS provision, England, 150–151 outline, 155–159 EC controller unit, 155–159 electronic control (EC) system, 155, 155f user interface, 155 potentials, 152 provision reasons, 152–155 scope, 151 Violet’s case study, 153–155 background, 153–154 ECS intervention, 154 expectations, 154 follow-up, 154–155 goals, 154

352 INDEX

Equilibrium system, 11 Ergonomic keyboards, 118 Ergonomic mice, 129 Error handling, 142 Evidence-based practice (EBP), 200–202, 200f best research evidence, 201–202 clinical experience, 201 patient values, 200–201 practice-based evidence, 202 preferences, 200–201 randomised controlled trials (RCTs), 201–202 Executive functioning error self-regulation, 34 microprompting assistive technologies, 34–35 neuropsychological test batteries, 33 ‘rule-breaking’ patients, 34 ‘task failures’, 34 Eye-gaze access, 132 applications assessment, 136 communication, 135 computer access, 135 exploration and early learning, 135 assistive technology, 133, 134f–135f Malcolm’s case study, 136 Michael’s case study, 136 selection set design for, 136 software, 134–135 technology, 133, 134f F Feedback mechanism, 61 signals, 156–157 Feedforward system, 61 Fine motor movement bilateral integration, 93 body awareness (proprioception), 94 crossing midline, 94 hand and finger strength, 94 hand division, 94 hand dominance, 94 hand/eye coordination, 94 object manipulation, 94

Frontal lobe function, 9 Functional posture, 64–65 G GaitTrainer, 321, 323f Generalised cognitive impairment, 30–31 GENTLE/s project, 317, 317f Global Cooperation on Assistive Technology (GATE), 82 Grammatical organisation, 191 Graphic symbols, 185f Gross movement upper limbs, 93 H Hardware keyboards, 112 Head-controlled pointing devices, 129–130, 130f–131f Hereward College, 234 High contrast keyboards, 116 Highlighter movement control, 141 High muscle tone, 58 Hip abduction, 71, 71f–72f HomePlug, 223 Huntington’s disease, 21 Hybrid Assistive Limb (HAL), 324 Hypertonia, 58 Hypotonia, 58, 58f I iARM, 332, 333f iCue system, 235–236, 236t Impaired self-awareness, 31–32 Implicit capabilities, 239 Indego, 326 Indirect selection, 110–111 Inherited metabolic disorders, 19–22 Insular cortex, 9 Intelligent and Green (INTEGER), 226 International Classification of Diseases (ICD), 29 International Classification of Functioning, Disability and Health (ICF), 2, 2f, 54–55, 54f Internet Protocol, 225 IR-controlled telephones, 157, 158f ISO OSI model, 219

INDEX  353

J Jack’s case study, 113 James’s case study, 304 assistive technology software-mediated model, 305–306, 307f, 307t Jenifer’s case study, 126, 126f John Grooms Housing Association, 232–233 John’s case study, 308–309 paediatrics assessment findings, 77 physical assessment, 77 postural management goals, 77 recommendations, 78 seating requirements, 77–78 social/environmental/psychological, 77 Joysticks, 127–128, 127f K Keyboards Accent 1400, 111, 112f accessibility options Jack’s case study, 113 settings, 113, 114t compact keyboards, 115–116 connections, 113 difficulty, 113 ergonomic keyboards, 118 hardware keyboards, 112 high contrast keyboards, 116 keyguards, 115 large key keyboards, 117–118 Pathfinder voice output communication aid, 111, 112f shortcuts, 125 stickers, 116 sticks and pointers, 114–115 Keyguards, 115f custom-made iPad keyguard, 115, 116f voice output communication aid keyguard, 115, 116f KNX, 219–221 L Language processors, 190–192 Large key keyboards, 117–118, 117f Lesch-Nyhan syndrome, 19

Leukodystrophies, 19 Lifestyle monitoring systems (LMS), 242 Limbic system, 9 Lipidoses, 19 Locomotor driving system, 11, 11f Lokomat, 321 LonWorks, 221 Lower Extremity Powered ExoSkeleton (LOPES), 321 Lower limb robotic rehabilitation systems, 319–329 ATLAS, 327, 327f Ekso, 325–326 fixed/stationary systems, 320–321 GaitTrainer, 321, 323f HEI-YNCREA School, 328–329 Hybrid Assistive Limb (HAL), 324 Indego, 326 Lokomat, 321 Lower Extremity Powered ExoSkeleton (LOPES), 321 mobile exoskeletons, 321–329 overground walking systems, 321–329 ReWalk, 322–324 REX, 324, 325f Lower limbs, movement of ankle dorsiflexion/plantarflexion, 73 head position, 74 hip abduction/adduction, 72 hip flexion, 72 hip internal/external rotation, 73 knee flexion/extension, 73 popliteal angle, 73 shoulder rotation and obliquity, 73 spine movement and position, 73, 73f–74f Thomas test, 73 upper limbs movement and position, 73 weight distribution and loadbearing, 74 Low muscle tone, 58, 58f M Macros, 125 Malcolm’s case study, 128, 136 Manchester Methodist Housing Association, 234

354 INDEX

Martin’s Case Study (adult) assessment, 206 background, 206 goals, 206 low-tech, 209 options, 207–208, 207f–208f outcome, 208–209 Mary’s case study, 117–118, 117f–118f Matching person to technology (MPT), 87 Memory acquired brain injury (ABI), 36 prospective memory (PM), 35–36 short-term/working memory difficulties, 35 Mesoderm, 3 Michael’s case study, 136 Microprompting software, 32 Millennium Homes Project, 234–235 Mirror Image Motion Enabler (MIME), 316–317 MIT-MANUS, 316 Motivation, 32 Motor neuron diseases, 23–24 Motor system, 12f blockage, 12 central pattern generators, 10–11 circle of Willis, 12, 13f cortical adaptive system, 11 descending inhibition, 11 equilibrium system, 11 localised brain injury/impairment, 13 locomotor driving system, 11, 11f peripheral nerves, 14 primitive reflexes, 10 MouseKeys, 114–115, 121, 122f Mouse pointer control with speech digital assistants, 132 speech recognition, 132 with switches direct mouse control with multiple switches, 131 scanning mouse control with one or two switches, 131 Multidirectional-proportional input, 163 Multiple sclerosis (MS), 20 Multiple-switch input, 163

Muscle problems Becker’s muscular dystrophy, 25 Duchenne’s muscular dystrophy, 25 muscular dystrophies, 25 myopathies, 24–25 Muscle tone dystonia, 58 hypertonia, 58 hypotonia, 58, 58f spasticity, 58, 59f stretch reflex, 57–58 Muscular dystrophies, 25 Musculoskeletal system, 60 Myopathies, 24–25 N NeaterEater, 332, 332f Neural system, central nervous system (CNS), 56, 57f Neurocutaneous conditions, 16 Neurodevelopmental disorders, 29 Neurofibromatosis I, 16 Neurofibromatosis II, 16 Neuroglia, 7 Neurometabolic conditions, 19–22 Neurons, 7 Neuropsychological factors impaired self-awareness, 31–32 motivation, 32 plasticity, 33 Nikhil’s case studies (paediatric) assessment and outcome, 205–206 background, 204–205 Nordic Centre for Rehabilitation Technology, 84 Nordic countries, 84 O Occipital lobe function, 9 Old age dependency ratio (OADR), 82 OSGi, 225 Outcome measures functional independence measure, 99 goal attainment scaling, 99–100 individually prioritised problem assessment, 97

INDEX  355

International Classification and Function (ICF), 96–97 psychological impact of assistive devices scale, 98 therapy outcome measures system, 98 user evaluation of satisfaction with assistive technology, 98 P Parietal lobe function, 9 Parkinsonism, 20–21 Parkinson’s disease forward lean posture, 62, 63f Pathfinder voice output communication aid, 111, 112f Pauline’s case study operating system model, 306–309, 308f, 309t Pelvic obliquity, 70, 70f Pelvic rotation, 71, 71f Pen tablets, 129 Peripheral nervous system, 8, 14, 24 Personal ‘digital assistants’, 143–144 Personal digital assistants (PDAs), 230 Physical skills fine motor movement, 93 gross movement upper limbs, 93 Plasticity, 33 Pointing devices accessibility options, 121, 122t clicking mouse button, 121–123, 123f connections, 121 double clicking, 124 dragging, 124, 124f Dwell Select, 123–124 ergonomic mice, 129 head-controlled pointing devices, 129–130, 130f–131f joysticks, 127–128, 127f keyboard shortcuts and macros, 125 MouseKeys, 121, 122f mouse pointer control with speech, 132 with switches, 130–131 pen tablets, 129 trackballs, 125–126, 126f trackpads, 128–129, 128f

Poliomyelitis, 23 Positioning, 111 Positive support reaction, 59 Posterior pelvic tilt, 67–69, 68f Posterior superior iliac spine (PSIS), 67–68 Postural ability assessment process, 65, 65f information gathering, 66 measurement tools, 74–75 medical conditions, 66 physical assessment anterior pelvic tilt, 69–70, 69f equipment in sitting position, 74 lower limbs in relation to pelvis, 71, 71f–72f movement of lower limbs, 71–74 pelvic obliquity, 70, 70f pelvic position, 67, 68f pelvic rotation, 71, 71f posterior pelvic tilt, 67–69, 68f systematic approach, 67 psychological factors, 66–67 social and environmental factors, 67 Postural control system, 55 factors, 56, 56f feedback mechanism, 61 feedforward system, 61 impairment of forward lean posture, 62, 63f postural management, 62–64 tight hamstring muscles, 62, 63f muscle tone dystonia, 58 hypertonia, 58 hypotonia, 58, 58f spasticity, 58, 59f stretch reflex, 57–58 musculoskeletal system, 60 neural system, 56–57, 57f postural equilibrium/stability, 55 postural orientation, 55 reflex, 59–60 sensory system, 60–61 Postural equilibrium/stability, 55 Postural management, 62–64 Postural orientation, 55 Postural reflexes, 59

356 INDEX

Posture, 55 Powered mobility assessment, 261–266, 262t–266t clinical assessment, 262 control systems, 266–269 heavy duty, 267 joystick module, 266–267 light touch, 267 mini-joystick, 267 outline operation, 266 sip/puff tubes, 267 switched input, 267 tray mount, 267 hub motors, 260 indoor, 260 maintenance, 269 models of provision, 261 outputs, 268–269 power-assisted, 260 powered wheelchair selection. See Powered wheelchair selection programming, 268 reliability, 269 simple powered add-on units, 260 small drive wheels, 260 variations, 260–261 Powered wheelchair selection, 269–287 centre of gravity tilt, 275–276 change in position, 272–273 considerations, 269 drive-only powered chair, 270–271 drive wheel options, 278–284 front wheel drive chairs, 283–284, 283f kerb climber, 280, 281f–282f mid-wheel drive chairs, 280–283, 282f rear wheel drive, 278–280, 279f driving access method, 271 educational setting, 286–287 floating tilt, 275–276 hoisting, 274 lying orientation, 274 manual recline, 274 pivot tilt, 275 postural control, 273–274 powered elevating leg rests, 276 powered functions, 271–272

powered seat height adjustment, 277 pressure distribution, 273 psychological adjustment, 287 recline functions, 272–276, 272f seat to ground height, 269–270 standing function, 277–278 tilting mechanism, 275 tilt-in-space, 272–276 toileting, 274 wheel layouts and turning, 284–286, 285f workplace considerations, 287 Powerline technologies, 222 Premorbid intelligence, 33 Primary dystonia, 21 Primary lateral sclerosis (UMN), 24 Primitive reflexes, 10, 59 Progressive bulbar palsy (LMN), 24 Progressive cognitive impairment, 29–30 Progressive muscular atrophy (LMN), 24 Progressive supranuclear palsy (PSP), 21–22 Prospective memory (PM), 35–36 Proximity switches, 139 Pseudobulbar palsy (UMN), 24 Q Qatar National Research Fund, 83 R Radio frequency, 223 Random controlled trial (RCT), 245–246 Referral forms information gathered, 90, 91t ‘reason for referral’, 90 services, 91 Reflex, 59–60 Rehabilitation Engineering and Assistive Technology Society of North America, 84–85 REHAROB therapeutic system, 317, 318f ReWalk, 322–324 REX, 324, 325f Roboethics, 337–338 Robotics assistive robots, 313 degrees of freedom (DOFs), 312 design considerations, 332–337

INDEX  357

exoskeletons, 332–337 actuation mechanisms, 336 adaptability, 335 aesthetics, 335 autonomy/shared control, 334–335 biomechanical function, 334 control strategies, 336 costs, 335 flexibility and usability, 335 motivation, 335 physical interface, 335–336 portability, 335 safety, 332–333 future, 339 history, 312–313 iARM, 332, 333f NeaterEater, 332, 332f needs, 312 rehabilitation application, 314–332 movement assistance, 314–329 physical therapy, 314–329 roboethics, 337–338 robotic devices, 332 socially assistive robots (SARs), 329–331, 331t Ross’s case study, 123 Royal College of Speech and Language Therapists (RCSLT), 98 S Scanning, 110–111 Seating, 111 Selection set dimensions, 110 dynamic selection set, 110 fixed selection sets, 110 item representation, 110 items, 109, 109f item size, 109–110 spacing items, 110 Selina’s case study access methods, development in, 295–296 communication aid and environmental control software, 294–295 computer accessibility, 292–293

electronic assistive technology and integrated systems, 292 history and research, 291–298 integration, reasons for, 297–298 looking ahead, 297 standalone integration, 294 tablet technology for, 296–297 web accessibility, 293–294 wheelchair controls, 295 Sensory skills, 94–95 Sensory system somatosensory system, 60–61 vestibular system, 61 visual system, 61 Single switch scanning access, 159–162 EC controllers, 159–160 individual abilities, 160 scan patterns, 161–162, 161f single degree of freedom, 160 user switch, 159–160 Single switch with temporal control, 162 Sip-puff (pneumatic) switch, 139 Socially assistive robots (SARs), 329–331, 331t Social Security Administration’s Assistive Technology Centre, 84 Somatosensory system, 60–61 Spasticity, 58, 59f Specialist EC peripheral interface units (SPIUs), 157, 158f, 159 Specific cognitive impairment, 30–31 Speech recognition alternative and augmentative ­communication, 144 computer control, 144 dictation, 144 input, 163–164 microphones, 144–145 personal ‘digital assistants’, 143–144 Spinal cord, 56 Spinal muscular atrophies, 23 Spinal problems, 22–24 SPIUs. See Specialist EC peripheral interface units (SPIUs) Stephen Hawking’ case study, 137, 137f Sticks and pointers, 114–115 Stretch reflex, 57–58

358 INDEX

Stroke cerebrovascular haemorrhagic strokes, 18 incidence, 17 thrombotic/embolic strokes, 18 Sturge-Weber (rare), 16 Styli, 120 Switch access, 110–111 components, 137 control sites, 137–138 error handling, 142 highlighter movement control, 141 interfaces, 139–140 mechanical switches, 138, 138f proximity switches, 139 rate enhancement and speed of access, 142–143 scanning access, 140f directed scan, 141 group scan, 140–141, 141f simple scan, 140 settings, 142 sip-puff (pneumatic) switch, 139 Stephen Hawking’ case study, 137, 137f switch actions, 141 switch comfort, 138–139, 139f Switch comfort, 138–139, 139f Switch scanning, 110–111 Symmetrical tonic neck reflex, 59 Synapses, 7 T Tablet-based operating system adjustments, 172–173 mouse control, 173 speech recognition, 173 switch access, 173 Tawasol Symbols, 83 TDC2000 system, 218 Technology Acceptance Model (TAM), 39–40 Temporal lobe function, 9 Text entry methods, 169–170 Thread, 225 Thrombotic/embolic strokes, 18 Tonic labyrinthine reflex, 60

Touchscreens accessibility options, 119–120, 120t advantages, 119 alternative access, 120 styli, 120 Trackballs, 125–126, 126f Trackpads Chloe’s case study, 129 Easy Cat Touchpad, 128, 128f settings, 129, 129t Tuberous sclerosis, 16 Tumours, 18–19 Two switch-user advanced scanning, 162 U Upper limb robotic rehabilitation systems, 315–319 ARMin robot, 318–319 Bi-Manu-Track, 318, 319f GENTLE/s project, 317, 317f Mirror Image Motion Enabler (MIME), 316–317 MIT-MANUS, 316 REHAROB therapeutic system, 317, 318f V Ventricles, 10 Vestibular system, 61 Visual system, 61 W Wernicke’s area, 10 Whole Systems Demonstrator (WSDAN), 245–246 Wigton Smart Home, 227–228 ‘Windswept’ hips, 71, 72f WiseDX, 295 X X10 system, 222 Y York Smart Flat, 227 Z Zigbee, 224 Z-wave, 223–224