INTELLECTUAL DISABILITY REVIEW PANEL
REPORT TO THE DIRECTOR-GENERAL ON THE RELIABILITY AND VALIDITY OF ASSISTED COMMUNICATION
MARCH 1989
TERMS OF REFERENCE
In accordance with Section 28 of the I.D.P.S. Act, 1986, the Director-General of the Department of Community Services Victoria, referred to the Review Panel for investigation, the "matter of the validity and reliability of a communication technique referred to as "assisted communication' which is widely used and promoted by DEAL communication centre".
The Director-General sought the advice of the Review Panel in relation to the following terms of reference:
- To report on the method known as assisted communication and its use as an aid to communication for persons with an intellectual disability;
- To develop and apply a method to determine the validity and reliability of communication which occurs using this technique;
- To recommend appropriate options for action arising from (1) and (2) above;
- To recommend any appropriate procedures or practices for funding agencies as a result of these investigations.
Appendix I- Investigation into the Reliability and Validity of the "Assisted Communication Technique' - Clarification of Terms
(ii)
PREFACE
Since receiving the reference from the Director-General of the Department of Community Services, Victoria, to report on the reliability and validity of the "assisted communication technique', the Review Panel has undertaken an arduous and detailed investigation into the issues raised by the terms of reference. The Review Panel’s task has been most challenging and of great interest.
This report outlines the issues and provides recommendations for action as requested. The various issues involved in the scope of the terms of reference, received considerable comment during the investigation and it is obvious that they are of concern to many individuals and organisations.
As the primary rationale of the Review Panel is to protect the rights of people with intellectual disabilities, all matters referred to it are considered within this context. Consistent with the aims and principles of the I.D.P.S. Act, 1986, the rights of clients have been the paramount consideration and these have determined the framework for investigating the reliability and validity of the 'assisted communication technique' and the subsequent recommendations.
The Review Panel was acutely aware of the history of the debate and conflict surrounding the "assisted communication technique' and the process which led to the investigation. For this reason, great care was taken to ensure that information and comments accepted by the Review Panel were relevant to the terms of reference and related only to the study of the technique and not to individuals or organisations.
To obtain all relevant information representing a broad section of views, the Review Panel publicly advertised for submissions from the general public and interested people in the field (Appendix II- Public Notice). Additionally, the Review Panel took the opportunity to speak to and consult with a large number of people and to inform itself on the issues. The process of consultation included submissions, hearings, and extensive discussions with service providers, parents, clients, professionals and interested others. A wide range of information was obtained in relation to each of the terms of reference and the proposed study design. This information was carefully scrutinised and considered.
It was considered by some that natural justice demanded their attendance at all meetings of the Review Panel involving discussions with other individuals. However, the Review Panel made it clear that it was not adopting adversarial procedures and that individuals or organisations were not being reviewed (Appendix III- Introduction to Hearings) There were thus no allegations to defend. The hearing was not of a legal nature, the technique was not on "trial" and information presented to the Review Panel was not in the form of evidence.
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To advise the Director-General on the terms of reference, the Review Panel considered the most appropriate means of researching the matter was by consultation and the conduct of a controlled study. A week of hearings was held to increase the opportunity to speak to people. Further meetings and consultations were held by the Review Panel with many people including visits to centres and organisations throughout the period of the investigation ..
The overall objective was to enable the Review Panel to fully inform and appraise itself of the issues and comprehensively research the area.
The Review Panel considers that this objective has been satisfactorily achieved.
The Review Panel sincerely believes that the report and recommendations will contribute significantly to the resolution of the issues which gave rise to the request for this investigation.
BEATRICE MELITA M.A.P.S. President
(iv)
SUMMARY AND RECOMMENDATIONS
The term assisted communication was defined by the Review Panel as "communication by a person in which the response of that person is expressed through the use of equipment and is dependent on the assistance of another person". The use of physical assistance where a part of a person’s body is held by an assistant is the technique which is principally in dispute.
The extent and nature of its use was the subject of extensive submissions and discussions. This report details the various issues which emerged and significant amongst these are the legitimacy of physical assistance as a training method and the relative importance of independence, complexity and generalisability of communication. Implications of these issues and the use of the method were considered with particular reference to the climate of conflict and the realization of client rights. Existing gaps in service provision were also noted and referred to in the recommendations.
The Review Panel then developed, trialled and applied methods to determine the reliability and validity of assisted communication with the help of a small group of voluntary clients and assistants. Neither major position in the dispute underlying the investigation was wholly supported. Some communications were valid and reliable through assisted communication without influence by the assistant. On the other hand some communications were influenced by assistants.
The validity of communications using the 'assisted communication technique' was demonstrated in four of the six clients who participated in thetwo studies. Three clients participatedin the controlled study and the data indicated that the communication of one of the three clients was validated using the "assisted communication technique'• The communication of the other three clients who participated in the message passing exercise was also validated.. In all three cases of the controlled study, client responses wereinfluenced by the assistant although in one of these cases, influence occurred with a client who demonstrated valid, uninfluenced responses to other items.
The objective procedures which were developed for determining the reliability and validity of assisted communication were found to be practicable and consonant with the protection of client rights. However, flexibility in choice of procedures and in their application was considered to be required in each case along with careful recording of results.
Given the issues raised in Chapter One, the results of the study, the persistence of disputes and the responsibility of all agencies to ensure the protection of client rights consistent with the I.D.P.S. Act (1986), the Review Panel was obliged to develop appropriate recommendations for a constructive resolution of the relevant issues. The recommendations are as follows:
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RECOMMENDATION 1
That procedures for dispute resolution be established to which all service providers of assisted or augmentative and alternative communication methods are bound and that the procedures include:
(a) guiding principles;
(b) a code of conduct describing expected ethical behaviour; and
(c) a clear set of protocol s describing steps to be followed in each case being reviewed.
RECOMMENDATION 2
That the Protocols for Dispute Resolution and Code of Conduct developed by the Review Panel and included in Chapter 3 (Section 3.5) be adopted.
RECOMMENDATION 3
(a) That a communication training program plan be developed for each client; and
(b) That clients eligible under the I.D.P.S. Act 1986 have the communication training program plan formally included in their General Service Plans with details of the program outlined in their Individual Program Plans.
RECOMMENDATION 4
That an organisation, body or individual be appointed to be responsible for resolving disputes regarding a client’s communication or communication needs by conciliation or by the application of an objective methodology as outlined in the Protocols for Dispute Resolution (Nos. 7 and 8) and Code of Conduct (No.8).
RECOMMENDATION 5
That the needs of clients requiring services for the development of communication skills be identified, together with an evaluation of the capacity of current service providers to meet these needs. The results of this survey should be used to plan and develop future services by extending, integrating or restructuring existing services and/or by establishing new services.
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RECOMMENDATION 6
That information about the range and type of communication services be made widely available in appropriate community languages, through the production of a booklet encompassing:
(i) services and service options available;
(ii) explanations regarding communication training methods available; and
(iii) the procedures for dispute resolution (Protocols and Code of Conduct).
RECOMMENDATION 7
That funding and services agreements be established and that funding be contingent on service providers adopting the Protocols for Dispute Resolution and Code of Conduct (as outlined in Chapter 3, Section 3.5 of this report).
RECOMMENDATION 8
That funding and services agreements be established and funding be contingent on service providers developing and reviewing communication training program plans for each client and incorporating the communication training program plan in the General Service Plan and Individual Program Plan for clients eligible under the I.D.P.S., Act, 1986.
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ACKNOWLEDGEMENTS
The Review Panel would like to express its appreciation for the co-operation and assistance received from individuals and organisations during this period. In particular, we are very grateful to the many clients and parents who gave of their time to speak with us, warmly welcomed us into their homes and provided us with valuable insight.
In addition, Dr. Glen Rowley (Education Faculty, Monash University) assisted us in designing the controlled study and provided valuableinformation on statistical methodology.
In conducting this investigation, the Review Panel has been fortunate to have the professional and dedicated services of Ms Cate Anderson as Research Officer and Ms Michelle Trebilco as Secretary. Both have been meticulous in their attention to detail and have worked untiringly in managing the vast volume of information. We greatly appreciate their contribution in completing this report.
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PANEL MEMBERSHIP FOR THE INVESTIGATION INTO THE RELIABILITY AND VALIDITY OF 'ASSISTED COMMUNICATION TECHNIQUE'
The Intellectual Disability Review Panel (the Review Panel) is a statutory body established under Section 27 of the Intellectually Disabled Persons' Services Act 1986, Victoria and members of the Review Pane 1 are appointed by the Governor-in-Counci1 for a period of three years.
One of the functions of the Review Panel is to advise the Minister for Community Services or the Director-Genera1 of the Department of Community Services on any matter referred to it by the Minister or the Director-General (Section 28(c}).
The following Members investigated the reliability and validity of the "assisted communication technique'.
Ms Beatrice Melita -- President
Dr Lawrence Bartak -- Psychologist Member
Ms Elaine Nyberg --Community Representative Member
Ms Silvana Scibilia -- Community Representative Member
Mr Zev Wagen -- Departmental Officer Member
Research Assistant to the Review Panel: Ms CateAnderson
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TABLE OF CONTENTS
Terms of Reference(i)
Preface (ii)
Summary and Recommendations (iv)
Acknowledgements (vii)
Panel Membership (viii)
CHAPTER 1 - FIRST TERM OF REFERENCE
Section 1.1 The "Assisted Communication Technique' 1
1.1.1 Assessment 2
1.1.2 Training 2
1.1.3 Actual Communication 4
Section 1.2 People Using Assisted Communication 4
1.2.1 Client Groups 4
1.2.2 Apraxia 5
1.2.3 Organisations 6
Section 1.3 Assisted Communication Devices 6
1.3.1 Technology 6
1.3.2 Cost of Communication Devices 8
Section 1.4 Issues Related To the use of Assisted Communication 9
1.4.1 Independent Forms of Communication Versus Physical Assistance 9
1.4.2 Generalisabi1ity 11
1.4.3 Complexity Versus Independence 13
1.4.4 Emotional & Behavioural Consequences 14
1.4.5 Climate of Conflict 15
1.4.6 Clients' Rights 17
1.4.7 Service Gaps 18
Section 1.5 Conclusion 19
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CHAPTER 2 - SECOND TERM OF REFERENCE
Section 2.1 Objectives 20
Section 2.2 Introduction 20
Section 2.3 Development of Method 21
2.3.1 Principles of Study Design 21
2.3.2 Acknowledging and Accepting Relationship Between Assistant and Client 22
2.3.3 Additional Considerations 22
2.3.4 Decision to Ask Client to Participate in Study Via Assisted Communication 22
2.3.5 Study Design 23
Section 2.4 Trialling the Method 25
2.4.1 Client Groups 25
2.4.2 Participation 26
2.4.3 Results of Trials 26
2.4.4 Discussion 28
2.4.5 Conclusion - Trials 28
Section 2.5Report on the Study of Reliability and Validity of 'Assisted Communication Technique' 29
2.5.1 Sample 29
2.5.2 Results of Controlled Study with Three Subjects 30
2.5.3 Results of Case No. 30
2.5.4 Results of Case No. 2 32
2.5.5 Results of Case No. 3 33
2.5.6 Results of Message Passing Exercise 36
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Section 2.5 (ctd)
2.5.7General Observations 38
2.5.8Summary of Data on Reliability and Validity of Assisted Communication 40
Section 2.6Advice on the Application of the Method 41
CHAPTER 3 - THIRD TERM OF REFERENCE 44
Section 3.1 Issues Arising from (1) and (2) 44
Section 3.2 Study Findings 45
Section 3.3 Options for Action 47
3.3.1 Introduction 47
Section 3.4 Recommendations 48
Section 3.5 Protocols and Code of Conduct 49
3.5.1 Principles and Procedures 49
3.5.2 Code of Conduct 50
3.5.3 Protocols in Dispute Resolution 51
CHAPTER 4 - FOURTH TERM OF REFERENCE 54
Section 4.1 Introduction 54
Section 4.2 Recommendations 56
BIBLIOGRAPHY57
LIST OF APPENDICES 61
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PageAPPENDIX I / INVESTIGATION INTO THE RELIABILITY AND
VALIDITY OF "ASSISTED COMMUNICATION TECHNIQUE’
Clarification of Terms / 62
APPENDIX II / PUBLIC NOTICE / 63
APPEND IX III / INTRODUCTION TO HEARINGS / 64
APPENDIX IV / TEACHING STRATEGIES USING PHYSICAL ASSISTANCE / 66
APPENDIX V / BEHAVIOUR PROBLEMS AND LANGUAGE DISORDERS / 68
APPENDIX VIAPRAXIA 69
APPENDIX VIIASSISTED COMMUNICATION DEVICES 71
Part 1 - Assisted Communication Devices (MAC) 71
Part 2 - Assisted Communication Devices - Part of a Submission 78
APPENDIX VIIISUMMARY REPORT Of FOLLOW-UP BY REVIEW PANEL OF DISPUTED CASES MENTIONED IN WORKING PARTY REPORT 83
APPENDIX IX SUMMARY. REPORT OF FOLLOW-UP BY REVIEW PANEL OF CLIENTS USING THE ‘ASSISTED COMMUNICATION TECHNIQUE’ IN MINISTRY OF EDUCATION FACILITIES 84
APPENDIX X ANALYSIS OF PUBLIC RESPONSE85
1
REPORT
The Intellectual Disability Review Panel appointed pursuant to the provisions of the Intellectually Disabled Persons' Services Act, 1986, reports as follows:
Investigation into the Reliability and Validity of Assisted Communication -- CHAPTER ONE:
1. FIRST TERM OF REFERENCE
'TO REPORT ON THE METHOD KNOWN AS ASSISTED COMMUNICATION AND ITS USE AS AN AID TO COMMUNICATION FOR PERSONS WITH AN INTELLECTUAL DISABILITY.·
1.1 The 'Assisted Communication Technique’
The term assisted communication as referred to in the Terms of Reference is not generally used in professional literature. The term ‘augmentative and alternative communication' is the common referent when describing the communication techniques used by those who are either unable to communicate verbally or have limited speech due to physical or intellectual disability. This term encompasses a variety of techniques although, in the emerging field of augmentative and alternative communication, there is at present no consistent terminology and various terms are used interchangeably (Lloyd and Kangas, 1988, pages 54-57). (Appendix IV further explores the use of physical assistance as a teaching strategy.)
For the purposes of the investigation, the Intellectual Disability Review Panel c1arified the term assisted communication as referring to:
communication by a person in which the response of that person is expressed through the use of equipment and is dependent on the assistance of another person.
A communication impairment may concern the expressive area of a person's communication whi1e other cognitive functions, including the receptive domain, remain less affected. It is genera 11y accepted that there are people who possess intact cognitive skills but are unable to verbally express themselves.
Assisted Communication refers to a number of techniques used to address this problem and bridge the gap between receptive and expressive language by means of equipment and the assistance of another person.
2
The use of physical assistance where a part of the person's body is held to enable communication is the technique which is principally in dispute.
In order to understand the context in which the technique is used and to clarify emerging issues, the Review Panel categorised the circumstances in which the ‘assisted communication technique' is practised as falling into the following three areas:
(i) Assessment
(ii) Training
(iii) Actual Communication.
The following sections of the report are based on the available professional literature and information presented to the Review Panel.
1.1.1 ASSESSMENT
The ‘assisted communication technique' is used, as with other augmentative methods, to assess receptive language in the absence of an obviously accessible expressive language. It may also be used to assess the level of communication of a person for educational or other purposes.
Differences of opinion regarding a person's communication ability and/or degree of comprehension may arise as a result of assessment using physically assisted communication. This may be especia1ly the case if there has been a history of less successful attempts to communicate using other techniques or if the assessment cannot be validated by even a simple independent method of communication.
1.1.2 TRAINING
The ‘assisted communication technique' is generally considered to be an element in the training process for ski11 acquisition and independent movement. In this context, it is a means to an end and thus a training method to achieve the principal goal of independent communication.
Assisted communication involves or may be variously referred to as facilitation, graduated guidance or graduated movement, coactive modelling and physical shaping. It is used extensively to co-actively model desired responses in the process of skill development with clients who have physical and/or intellectual disabilities and in the rehabilitation of neurological conditions. (Foxx, 1982; Oppenheim, 1977; Wing, 1986; Bobath, 1986) •
3
The process of skill development may be said to have four phases: the initiation phase, the stabilization phase, the maintenance phase and generalisation phase (Hegde, 1985). The goal, in relation to the development of communication skills, is to communicate without assistance in new environments and with a variety of people. During the first two phases of initiation and stabilization, the person is physically assisted by co-active modelling, shaping, demonstrating and/or facilitation of movement. During the third phase of maintenance, the ability to retain learned skills in the absence of physical assistance over a period of time is maintained. In the generalisation phase, the shaping or assistance has been withdrawn and the individual communicates independently with a variety of people in divers~ settings.