Facilitated Communication & Augmented and Alternative Communication

276 Pages·2012·2.91 MB·English

G U
RIFF ITH NIVERSITY

Facilitated

Communication &
Augmented and
Alternative
Communication: A
review

Paul Mazerolle and Margot Legosz

2012
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G RIFFIT H UNIVERSIT Y
Table of Contents
Acronyms .............................................................................................................................................. vii
Executive Summary ................................................................................................................................. 1
Introduction ........................................................................................................................................ 1
Terms of reference .............................................................................................................................. 1
How the review was conducted .......................................................................................................... 2
The findings of the review .................................................................................................................. 3
Responses to the Terms of Reference ................................................................................................ 6
Recommendations ............................................................................................................................ 10
Evaluating the evidence ................................................................................................................ 11
Facilitated communication ........................................................................................................... 11
Amendments to current policies and procedures ........................................................................ 13
Human rights and legal issues ....................................................................................................... 13
Ensuring whole of government seamless life-course support ...................................................... 14
Chapter 1: Background to the review ................................................................................................... 15
Introduction ...................................................................................................................................... 15
How many people require assistance for communication disabilities? ........................................... 15
What are communication disabilities? ............................................................................................. 16
What is Augmented and Alternative Communication (AAC)? .......................................................... 17
What is Facilitated Communication? ................................................................................................ 18
Why is FC controversial? ................................................................................................................... 19
Disability and Community Care Services Queensland (DCCS) .......................................................... 21
How the review was conducted ........................................................................................................ 25
Data collection .............................................................................................................................. 26
Further context for the review ..................................................................................................... 29
Chapter summary ................................................................................................................................. 30
Chapter 2: How to assess research evidence ....................................................................................... 31
Introduction ...................................................................................................................................... 31
Research standards ........................................................................................................................... 32
Study types .................................................................................................................................... 32
Could there be other explanations for the results? ...................................................................... 37
What if the research evidence doesn’t agree? ............................................................................. 38
Can the results be applied in other settings and to other patients? ............................................ 39
Chapter summary ............................................................................................................................. 39
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Chapter 3: Evidence based practice in speech pathology .................................................................... 41
Introduction ...................................................................................................................................... 41
Speech Pathology Australia .............................................................................................................. 41
EBP models for Speech Pathologists ................................................................................................. 42
Training and support ..................................................................................................................... 43
Challenges ..................................................................................................................................... 44
Responsibilities ............................................................................................................................. 44
Other processes for enhancing EBP for speech pathologists ........................................................... 45
Communication assessment tools .................................................................................................... 46
Chapter summary ............................................................................................................................. 47
Chapter 4: A critical examination of the research evidence for FC ...................................................... 48
Introduction ...................................................................................................................................... 48
Overview ........................................................................................................................................... 48
Systematic reviews ........................................................................................................................ 49
Literature reviews ......................................................................................................................... 55
Recent individual studies .............................................................................................................. 59
Submissions to the review ................................................................................................................ 62
Senior academics and other experts ............................................................................................. 62
Practitioners .................................................................................................................................. 62
Families ......................................................................................................................................... 67
How does the research evidence ‘stack up’? .................................................................................... 69
Could the positive outcomes identified with FC be due to confounding factors? ....................... 71
How does the research evidence inform the TOR of this review? ............................................... 72
Chapter summary ............................................................................................................................. 75
Chapter 5: A critical examination of the research evidence for AAC options ...................................... 77
Introduction ...................................................................................................................................... 77
Who uses AAC and how do they do so? ........................................................................................... 78
Assessing need .............................................................................................................................. 79
The research evidence .................................................................................................................. 82
Measuring effectiveness ............................................................................................................... 94
Facilitators and barrier to using AACs ............................................................................................... 97
Chapter summary ........................................................................................................................... 100
The NH&MRC guidelines ............................................................................................................. 102
Chapter 6: The extent to which FC and AAC systems are used by DCCS clients in Queensland ........ 103
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Introduction .................................................................................................................................... 103
A profile of FC and other AAC users in Queensland, 1981-2012 .................................................... 103
1981-1991 ................................................................................................................................... 103
1992-1993 ................................................................................................................................... 104
1993-1996 ................................................................................................................................... 111
1997-2004 ................................................................................................................................... 115
2005 ............................................................................................................................................ 117
2006 ............................................................................................................................................ 117
2007-2010 ................................................................................................................................... 128
2011-2012 ................................................................................................................................... 130
Chapter summary ........................................................................................................................... 134
Chapter 7: Potential risks - human rights, the law and other contentious issues .............................. 138
Introduction .................................................................................................................................... 138
Legal action ..................................................................................................................................... 139
Are there other risks associated with FC? ...................................................................................... 147
Rights .............................................................................................................................................. 150
Standards ........................................................................................................................................ 151
What are the risks associated with AAC? ....................................................................................... 153
Chapter summary ........................................................................................................................... 155
Chapter 8: Policy scan ......................................................................................................................... 157
Introduction .................................................................................................................................... 157
Policy positions re AACs .................................................................................................................. 157
Policy positions re FC ...................................................................................................................... 160
Chapter summary ........................................................................................................................... 169
Chapter 9: DCCS policies, practice guidelines and procedures ........................................................... 170
Introduction .................................................................................................................................... 170
An examination of the policy, practice guidelines and procedure ................................................. 170
Communication Support for People with Complex Communication Needs Policy (2005) ......... 170
Practice Guidelines: Communication Support for People with Complex Communication Needs:
Community and Specialist Services & Accommodation Support and Respite Services (DSQ 2005)
.................................................................................................................................................... 174
Procedure for the use of Facilitated Communication ................................................................. 176
Practice guide: responding to sensitive or life changing information communicated by methods
other than speech ....................................................................................................................... 181
Chapter summary ........................................................................................................................... 182
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Chapter 10: Discussion and recommendations .................................................................................. 185
Introduction .................................................................................................................................... 185
What works and what doesn’t? ...................................................................................................... 185
Facilitated communication ......................................................................................................... 186
Augmented and alternative communication .............................................................................. 186
Assessment ................................................................................................................................. 186
The importance of a whole of government approach to supporting people with CCN across the
life-course ................................................................................................................................... 187
Responses to the Terms of Reference of this review ..................................................................... 187
Where to from here? ...................................................................................................................... 192
Recommendations .......................................................................................................................... 194
Evaluating the evidence .............................................................................................................. 194
Facilitated communication ......................................................................................................... 194
Amendments to current policies and procedures ...................................................................... 196
Human rights and legal issues ..................................................................................................... 196
Ensuring whole of government seamless life-course support .................................................... 196
References .......................................................................................................................................... 198
Appendix 1: Consultation list for the review prepared by the Department ....................................... 222
Appendix 2: Letter of invitation to make a submission to the review ................................................ 224
Appendix 3: Glossary of common AAC terms ..................................................................................... 226
Appendix 4: Lucy’s story ..................................................................................................................... 229
Appendix 5: Checklist for appraising the quality of studies of interventions (NH&MRC 2000b) ....... 230
Appendix 6: Quality criteria for randomised controlled trials, cohort studies, case-control studies and
systematic reviews (NH&MRC 2000b) ................................................................................................ 231
Appendix 7: A brief summary of communication assessment tools identified in the research
literature ............................................................................................................................................. 232
International assessment tools ................................................................................................... 233
Australian tools ........................................................................................................................... 235
Appendix 8: Results of PECS review by Schlosser and Wendt (2008) ................................................. 240
Appendix 9: PECS studies reviewed by Hart and Banda (2010) .......................................................... 243
Appendix 10: PECS studies reviewed by Tincani and Devis (2010) ..................................................... 246
Appendix 11: Single case studies examined by Ganz et. al. (2011) .................................................... 250
Appendix 12: A critique of FC research by Todd, J (undated) ............................................................. 252
Introduction .................................................................................................................................... 252
FC studies: a critique by Todd ......................................................................................................... 252
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Appendix 13: Relevant extracts from the United Nations Convention on the Rights of Persons with
Disabilities ........................................................................................................................................... 255
Appendix 14: AAC Service Standards Statements (Communication Matters [UK]) ............................ 260
Appendix 15: A brief overview of a recent legal case in Victoria ....................................................... 264

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Acronyms

AAC Augmented and Alternative Communication
ABA Applied Behaviour Analysis
ABS Australian Bureau of Statistics
ALS Amyotrophic Lateral Sclerosis
ASD Autism Spectrum Disorders
ASHA American Speech Language Association
AS&SR Accommodation Support and Respite Services (DSQ)
AT Assisted Technology
BIS Business Information System (DCCS)
CCN Complex Communication Needs
CP Control Procedures
C&SS Community and Specialist Services (DSQ)
DCCS Disability and Community Care Services
DETA Department of Education and Training
DETE Department of Education, Training and Employment
DPI Disability Practice Improvement (Department of Communities)
DSQ Disability Services Queensland
EBP Evidence Based Practice
FC Facilitated Communication
FCT Facilitated Communication Training (not Functional Communication Training)
ID Intellectual Disability
MND Motor Neurone Disease
MS Multiple Sclerosis
NCP Non Controlled Procedures
NGO Non-Government Organisation
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NH&MRC National Health and Medical Research Council (Australia)
PECS Picture Exchange Communication System
RCT Randomised Controlled Trial
SGD Speech Generating Device
SLP Speech Language Pathologist
SPA Speech Pathology Australia
TOR Terms of Reference (for this review)
USQ University of Southern Queensland
VOCA Voice Output Communication Aid
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Executive Summary

With regards to Augmented and Alternative Communication: ‘The potential for controversy
is considerable and the potential for conflict is high; therefore, the ability to negotiate and
collaborate is required of all involved’ (Mirenda & Iacono, 2009, p. 14).
Introduction
Disability and Community Care Services (DCCS) has a policy that supports a range of communication
options (other than speech) for people with complex communication needs (CCN), collectively known
as Augmentative and Alternative Communication (AAC). This is the Communication Support for People
with Complex Communication Needs policy.
One strategy for accessing AAC options supported by DCCS is Facilitated Communication (FC).
However, significant concern has been raised about the validity and reliability of FC and this has
contributed to a strong divergence in opinion about it and an urgent need to assess its suitability for
use in Queensland.
The Research Team was invited to provide independent and impartial advice regarding the
appropriateness of the Department’s AAC policies and procedures so that the Department can
update its evidence-based policy (EBP) and practice position. With advances in technology, DCCS was
also interested to know about the effectiveness of AAC methods more broadly.
Terms of reference
The Department’s (2011) Request for written offer [Com – 0311] for a review of DCCS’s policy
position regarding support for people with CCN provided the following brief:
The intent of this review is to interrogate the existing evidence-base on AAC and its methodologies
and procedures, with a particular focus on FC. DCCS seeks the views of internal and external key
stakeholders and practitioners in order to establish if and where there is an appropriate use of FC,
and/or any other AAC procedure in the context of different types of decision making situations (e.g.
routine versus complex).
More specifically, DCCS sought advice on:
 Whether FC is a form of communication that:
a. is valid and reliable
b. reflects the independent decision making of the person with a disability, and
c. safeguards the integrity of the person and potential harm.
 The circumstances under which FC should or should not be used as a means of communicating a
person’s decisions.
 The extent to which DCCS should support and engage in this method of communication on the
basis of the existing evidence-base.
 The extent to which DCCS should formalise recognition of other AAC procedures.
 The extent to which the existing departmental policy and procedures require refinement in
order to ensure a clear and evidence-based policy position is articulated.

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The Department also sought the following:
 A summary of the evidence on AAC and FC through a comprehensive review of national and
international peer-reviewed published research, giving due consideration to systematic
literature reviews and controlled studies.
 Comment on the methodological considerations that should guide decision-making when
reviewing research evidence.
 Consultation with internal and external key stakeholders and practitioners to gather a robust
understanding of the issues associated with the use of FC and other communication methods
and practices.
 An analysis of any methodological limitations in the evidence-base specific to AAC and FC, and
consideration of levels of evidence that may provide greater confidence in some research
findings over others.
 A thorough analysis of the range of communication methods that could be applied to support
people with CCN to communicate independently (i.e. without the need for physical intervention
from a support person).
How the review was conducted
To inform the review the Research Team sought access to various process and impact measures
associated with FC and the various AAC options currently available to the department’s clients in
Queensland, including information about:
 The extent to which FC and AAC options are currently supported by DCCS (e.g. the number of
current and former users of each).

 The extent to which current and past practices align with best practice, regarding both the
research literature and existing policies and procedures.

 The views of current and former users/trainers/parents/staff of FC and various AAC options.

 The current effectiveness of, or risks associated with, FC and various AAC options in Queensland.

To gather this information we:

 Sought written submissions with regards to any or all of the terms of reference from key
internal and external stakeholders, including academics, practitioners and others with relevant
expertise, departmental staff, clients and parents (see Appendixes 1 and 2).

 Conducted consultations with many stakeholders and various experts in the field.

 Met with and heard from FC users and their parents/carers.

 Sought any available data regarding the extent to which FC and various AACs are used in
Queensland, especially within DCCS.

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