ACCESS TO JUSTICE FOR PEOPLE WITH SEVERE COMMUNICATION IMPAIRMENT - 4
Joan Dwyer (Senior Member, Commonwealth Administrative Appeals Tribunal)
People with a severe communication impairment, particularly those using facilitated communication, face difficulties in obtaining access to justice.
This article was first published in The Australian Journal of Administrative Law, February 1996, v.3, No. 2, pp. 73-119. DEAL is grateful to Ms Dwyer and to the Australian Journal of Administrative Law for giving permission to republish this material.
CHAPTER 4
The Intellectual Disability Review Panel Report
In 1985 the Federal and State Governments agreed to fund a project to establish a Communication Assistance Centre under the auspices of DEAL (a charitable association founded by Ms Crossley and supporters of her work in 1977, when she first discovered ways of teaching and communicating with nonspeaking people). The letters DEAL stand for dignity, education and language. Ms Crossley was appointed as the first project coordinator leading a multidisciplinary team of therapists and technical staff working to establish communication methods for adults and children who, because of physical disability, are unable to speak. (68)
In about May 1988 a document, which has become known as the "Statement of Concern", and which described facilitated communication as "covert deception" and was an attack on Ms Crossley and DEAL Communication Centre, was compiled by a group of health professionals who called themselves an "Interdisciplinary Working Party on Issues in Severe Communication Impairment". It was distributed to politicians and eventually the governmentappointed Intellectual Disability Review Panel ("IDRP") was asked to investigate the validity and reliability of "assisted communication" as used by DEAL Communication Centre. The IDRP in March 1989 published its report: "Investigation into the Reliability and Validity of the Assisted Communication Technique". The report is frequently cited by opponents of facilitated communication as establishing that facilitated communication is not genuine communication. (69)
In fact the IDRP report does not establish that at all. Six clients participated in the investigation by the IDRP, three in a "controlled study", and three others in a message passing exercise. The following points need to be made:
1. Of those six clients, all of whom had previously been assessed as intellectually impaired, the summary of the report states "The validity of communications using the 'assisted communication technique' was demonstrated in four of the six clients".(70) (This means demonstrated by spelling correct answers.)
2. All clients who were given the message passing test validated their communication. (71)
3. Of the three clients who participated in the controlled study using headphones, the report acknowledges that one client [client 2] showed "valid uninfluenced responses" although it claims that client also showed "influence". (72)
4. The two clients who were regarded by the IDRP as not having validated their responses also gave "expected answers" to questions asked of them which were not asked of their facilitators. (73)
5. If it were not for technical problems with the equipment used, those responses would have validated the communication of those two clients. Thus what failed the assessment was the test design and equipment, rather than the client's communication. (74)
6. When the technical problems with the testing of clients 1 and 3 in the controlled experiment were discovered, the following assumptions were made:
(i) that because of failure of the earphones to operate correctly, the facilitators had heard sufficient of the questions asked of the clients, which they were not intended to hear, to answer the questions themselves. The report does not state that this was verified with either facilitator.
(ii) that the same failure of the earphones to operate correctly had not enabled the clients to hear the facilitator's questions, although client 1's facilitator conjectured that perhaps he had heard her questions, (75) and he later stated he had done so. (76)
(iii) that the two facilitators for clients 1 and 3, both of whom were competent people, who understood the test design and were cooperating with it, had defeated the purpose of the test by themselves answering a question the client did not hear. It should be borne in mind that they both cooperated, to the extent of telling the testers when they could hear parts of the clients' questions. Why would they have done that if they were intending to answer the client's questions?
7. When the tests of clients 1 and 3 on the controlled study were rerun, additional variables were introduced to the testing process. First the clients were more tired. Client 1 had already answered seventeen questions correctly (including two asked of his facilitator) before he was retested. Client 3 who the report states made "very slow" progress and who "required frequent prompting to keep on task" (77) had answered seven questions. Secondly, both clients 1 and 2 may well have been angry that their first correct performances were not accepted. (78)
8. In the second test the decision that client 1's answer showed "facilitator influence" depended on a mere "attempt" to answer a question. (79) As to client 3, the conclusion depended on supposition and one answer to the facilitator's question.(80)
9. The report acknowledges the value of facilitated communication to those who use it, and their families. It states:
"1.4.4 EMOTIONAL AND BEHAVIOURAL CONSEQUENCES A consistent theme and often repeated observation by many parents supporting the 'assisted communication technique' was the significant positive behavioural changes which occurred as a consequence of participating in the program at DEAL. This was said to be particularly relevant for clients who have autism and other clients who have behavioural or emotional problems, short attention span or difficulties in relating to people. . . . The changes in behaviour have been in some cases so marked and beneficial that they have significantly contributed to an enhanced quality of life for the client and the whole family. For this reason, at least one parent expressed the view that identifying the reasons for the change or establishing the validity of the communication were ultimately irrelevant." (81)
10. The account in the report of the message passing tests clearly demonstrates the word finding problems which interfere with controlled experiment testing, and gives a client's own explanation as to why he wanted facilitation even though he could type independently. (82)
Before discussing some of those matters in more detail, it is helpful to mention some problems with the process and procedures used by the IDRP.
(i) Failure to allow DEAL to be present at all testing sessions
The terms of reference specifically stated that the IDRP was to investigate the validity of: " 'assisted communication' which is widely used and promoted by DEAL communication centre." In spite of this, the IDRP rejected DEAL's submission that it be allowed to be present at all IDRP testing sessions.
(ii) Problem with test design
The IDRP at first proposed an experimental design which involved DEAL clients, all of whom had, at one time, been assessed as intellectually impaired, and had thus led sheltered lives out of mainstream schooling, being asked the same ten questions eight times. DEAL, with its knowledge of its client group, before any experimenting was done, in a written submission warned the IDRP of the unsuitability of the test design. It commented:
"A reasonable test of the design would be to try it with a randomly selected group of twentyfive nondisabled young people in Broadmeadows. . . . People who use assisted communication are, by definition, not ordinary people. . They communicate slowly and with difficulty, and the effort and time involved in answering ten questions even once is considerable. It is difficult to imagine that they would consider answering them twice, let alone eight times. . . . augmentative communication is assisted by feedback; the communication partner will normally be able to say 'is that the one?' or to repeat the message or question aloud to refresh the client's memory - 'Speech Pathologists accustomed to working with this population continually repeat the nonspeaking person's utterance thus far...'. This is certainly the usual practice at DEAL. If the nonspeaking person is wearing earphones this is impossible. . . ." (83)
DEAL recommended that the proposed procedure be abandoned and that efforts be made to monitor genuine communication occurring naturally at home, school or centre. Subsequently the IDRP did modify the design. First it recognised that asking ten questions in each of four conditions twice may be too much. It proposed asking only three questions "per condition". Secondly, it added the "message passing" test. The IDRP acknowledged (84) that "the shortened methodology was considered to be more appropriate", but nonetheless some of the subjects on the controlled study were asked more than three questions in each condition. Client 1 was asked ten questions in condition A, client 3 was asked five. This is not explained in the report.
Test Design
The controlled experiment provided for clients to be asked questions in the following four conditions:
Condition A - Questions asked by facilitator in direct speech
Condition B - Same questions asked of client and facilitator. Client hearing question from speaker of tape recorder - facilitator hearing it through headphone.
Condition C - Different questions asked of client and facilitator. Client hearing through speaker of tape recorder; facilitator through earphones. The tape for conditions B and C was combined.
Condition D - Client hearing questions through a loudspeaker; facilitator hearing only music.
Message Passing
The second modification of the proposed test design was the addition of "Design No 3" which was described as follows:
"Information was given to the client out of hearing of the assistant who then returned to the room and had the message conveyed to her by the client via assisted communication." (85)
This is what DEAL calls message passing and is the method successfully used by Senior Master Jacobs in McDonald (2).
The actual testing
(i) The controlled experiment
Client 1 - [Boy] (86)
As already stated, client 1 had two trials. In the first trial he was asked ten questions and answered them correctly. (Why ten questions rather than only three?) As to conditions B and C, the report states:
"Conditions B and C - First Trial
Conditions B and C were conducted together. After two questions of Condition B and three questions of Condition C, the session was interrupted by the assistant who reported that the client was not able to keep up with the recorded questions and that the recorder would need to be stopped between questions to allow more time to respond. The trial was subsequently rerun from the beginning.
Condition B - First Trial
Two questions were asked under Condition B and these were correctly answered.
Condition C - First Trial
Three questions were asked under Condition C and the client responded to both his and the assistant's questions on two occasions. The client responded correctly to his third question. The assistant did, however, acknowledge that she could hear parts of some of the client's questions and the questions by this stage were not synchronized, thus increasing the likelihood of the assistant hearing the last question in this trial." (88) (emphasis added)
There is no suggestion made that the facilitator could have heard the client's first two questions in condition C, but for some reason client 1 was not given credit for his answers to those questions. When the test was rerun, he did not answer any questions which were different to those asked of his facilitator. The report states as to condition C:
"An attempt appeared to be made to the next question. However, the response was to the assistant's question, not to the client's question. Subsequently the client did not respond meaningfully to any further questions, except to print random sequences of single letters of the alphabet." (88)
The report does not let the reader know whether the "attempt" was unambiguously only the answer to the facilitator's question. As so much seems to hang on it, both the question and the "attempt" should have been set out. When asked privately after the testing had concluded, why he had answered the facilitator's questions as well as his own, the client said, because he had heard them. (89) He is autistic and it is reported that some autistic people have particular senses developed to a very acute or "hyper" level. (90) It is unfortunate that the test did not continue with an explanation being given to the client that he was confusing the testing by answering both questions and so it would be better if he only answered his own. Instead the test was rerun but the client did not cooperate. When client 1 gave up any attempt to answer questions, was he offended that his smart trick of answering both questions had not been allowed to continue, was he tired, or was he just feeling emotional? The IDRP concluded as to client 1:
"Conclusion
In the first trial, the client responded to both the client's and the assistant's questions. In trying to explain why the client answered the assistant's questions in Condition C as well as the client's, the assistant conjectured that the client may have overheard the assistant's questions through the earphones as the client had acute hearing. The assistant also reported being able to hear some parts of the client's questions some of the time.
The possibility of the client being able to hear the assistant's questions was later investigated by audiometric testing of the headphones. The results revealed that while there were vibrations, actual sounds or words were not able to be distinguished. It was, therefore, highly unlikely that the client was able to hear and respond to the assistant's questions. It is concluded therefore that the assistant may have influenced the response to these questions.
No conclusions can be drawn regarding the client's communication from either of the two trials of Conditions B and C and Condition D. Although the client responded correctly to his questions in the first trial of Condition C (as well as to those of the assistant) it was unclear as to whether the assistant had also heard the client's questions.
Therefore it would appear from the findings that it was not possible to demonstrate that the client gave correct responses independently. The results do not mean that the client was not able to communicate and further investigation is warranted." (91)
It appears from the IDRP report that the audiometric testing of the headphones made no allowance for the abnormal neurological functioning of some people with autism. (92) Nor did it explain why or how the facilitator would have heard the client's questions as well as her own, even though she was wearing headphones. Either way, the headphones were not operating as intended. Client 1 was penalised because the equipment was not functioning correctly. His facilitator said she had heard part of some of his questions. The IDRP report does not state that it asked whether that part was sufficient for her to have known the answer to his questions. Nor does it give any explanation as to why the facilitator would have answered both her own and the client's questions even if she had heard them both.
As the IDRP stated that "further investigation is warranted", client 1 should have been offered the chance to demonstrate the validity of his communication by using message passing.
After the testing Client 1 reached a stage of typing totally independently but, due to changes in his living circumstances, he is no longer involved in a communication program. (93)
Client 2 - [Boy]
The IDRP recognised that client 2 had correctly answered two questions which had not been heard by his assistant. It accepted that this was exceedingly unlikely to have occurred by chance. It is interesting to note that here again one answer in condition 3 appeared to be an answer to a question asked of the facilitator but the IDRP did not allow that fact to cloud the "correct" answer to two questions the facilitator had not heard. (94)
The fact that both clients 1 and 2, as well as answering their own questions, did answer one or two questions asked of the facilitator in condition C, seems to raise a problem with the whole experimental design. Does it mean that both these clients could hear the questions asked of the facilitator?
Client 3 - [Girl]
In condition A this client very slowly gave three correct answers. In condition B she gave the first letter of one correct answer and that was considered sufficient. On the first trial in condition C she answered three questions - one answer was the expected answer, the others were not expected answers but neither were they the answers to the facilitator's questions. Thus she proved her communication with one answer in condition C, and did not show any facilitator influence on her first trial, even with her two unexpected answers. (95)
However, once again, because of technical problems with the synchronisation of the tapes, the one correct answer was discounted. The report states:
"As the client needed to be constantly prompted verbally by the researcher and the questions needed to be repeated, it was decided to let the assistant's tape run on and act as an auditory screen for the researcher's prompts. This meant that the assistant's questions were not synchronized to the client's questions and she was receiving her own questions and music as the tape ran on. However, at one point when the researcher was attempting to resynchronize the tapes, the client's question was not fully screened from the assistant." (96)
The report does not expressly state whether or not that question was the one which the client answered with the expected response. If it was not, it does not give any basis for discounting the client's one correct answer in condition C in the first trial. If it was, it does not explain why the facilitator (a different one from the ones used for clients 1 and 2) would have answered the client's question. Once again technical problems led to a presumption of incompetence on the part of the client and lack of integrity on the part of the facilitator. An assumption of competence and integrity on the part of the facilitator would have led to the opposite explanation.
Again, a second trial was arranged for client 3 in which time was allowed for repetition of each question asked. In condition A five questions were asked and expected responses were given each time (one might ask why it was necessary to ask five questions - how long that process took - how tired the client became). In condition B the client answered two out of three questions - both answers were the expected response. In condition C the client gave three answers, none of which was the "expected response". (The IDRP report does not state whether only the "expected response" could be a response to the question asked.) One of the three answers was the answer to the facilitator's question; the other two were answers to other prepared questions but not those asked.
As to client 3 the IDRP concluded:
"Although it was not possible to demonstrate the validity of the client's communication, it was not possible to demonstrate that the client was unable to communicate. The client required constant prompting to elicit a response and this included verbal prompting to press the keys of the Canon Communicator. It is possible that this client may still be in the early stages of communication development. Further assessment and a review of progress needs to be undertaken within the broader context of the client's learning and developmental goals within six to twelve months. Ongoing services for this client are essential." (emphasis added) (97)
Why was this client, too, not further assessed using the message passing test?
(b) Message passing
The section of the report which describes the message passing part of the study establishes without any doubt that facilitated communication provides a method of genuine communication for people with severe communication impairment, and that the people involved had the intellectual ability to spell out answers. Facilitated communication is very important because it provides an efficient means of communication of more than a "Yes"/"No" response for people who otherwise have no efficient means of communication. This section of the IDRP report also provides clear indications of the word finding difficulties which may well be an explanation for some of the "test failures", i.e. the unexpected answers in some controlled experiment tests where the first word typed out is not the "expected response".
The description of client 2's responses is significant because it shows how even a client who can type independently preferred to type with hand contact from the facilitator. The wellknown author and neurologist, Oliver Sacks, and a best selling author with autism, Donna Williams, have suggested why facilitation may be required by some autistic people.
Oliver Sacks has written:
"The most recent and controversial of these methods is facilitated communication. FC (originally used with children with cerebral palsy) is based on the notion that if the hand or arm of a nonverbal autistic child is supported by a facilitator, the child may then be able to communicate by typing or by using an electronic communicator or letter board. The underlying thought is that such children may have a difficulty in initiating movements (akin to that of Parkinsonism), and that a light contact with another person may allow them to overcome this and achieve a normal motor facility (as may occur with touching, or even visual contact, in some Parkinsonian patients - I discuss this in Awakenings, footnote 45). The hope is that there may be, in at least some otherwise inaccessible patients, a rich but 'imprisoned' world of thought and feeling that may now be released by this simple tactic." (98)
Donna Williams states:
"Now, consider the . . . case in which one is consciously aware and voluntarily responsible regarding (internal) self but unaware of (external) other (including one's own hand). The prompting touch of a facilitator may be essential to getting the person [with autism] to use his or her hand as a tool to communicate this awareness . . ." (99)
The IDRP report reads:
"2.5.6 RESULT OF MESSAGE PASSING EXERCISE
It was decided to conduct the message passing exercise by offering a suitable gift to each client which the researcher presented in the absence of the regular assistant.
It was planned that, after a suitable time passed in discussing the gift, the assistant would return to the room and ask the client, quite naturally, what happened in her absence.
Client No. 1 - [Adult male]
The gift presented to this client was the guernsey worn by the Footscray Football Club, which prior inquiry had established was the client's favoured team (erroneously as it subsequently transpired). The client was delighted with the gift which was promptly tried on for size but which he later indicated was of the wrong football team. This was communicated with the regular assistant out of the room and with the mother acting as the assistant.
When the regular assistant returned to the room, the client had difficulty in expressing the precise nature of the gift but was able to communicate other related and appropriate items of information of which the assistant could not have been aware. The client conveyed to the assistant that it was the wrong football team and also indicated the team which the client did support, although this was conveyed amidst other inaccurate information such as the item of clothing.
Conclusion
The validity of the client's communication using the 'assisted communication technique' was demonstrated. Problems of interpretation did occur at the same time and it was not possible to say with any assurance the significance of some of the statements.
Client No. 2 - [Boy, age 15 approximately]
The procedure adopted with this client was slightly different in that the Panel Member and research assistant took the client to a shop to drink coffee and, whilst there, bought chocolate Easter eggs. The client also indicated that he would like 20 cents to buy 'smarties' from a selfserve container on a counter. He persisted in his request until he succeeded, which entailed engaging the help of a waitress. During this time, a gift of a black Tshirt was also presented.
The client was able to type independently and immediately on returning to the assistant's setting, the client typed out unassisted the words which related to his experiences, such as '20c smarties', 'chocolate' etc. Some time later he apologised through assisted communication for his insistent behaviour at the shop in trying to obtain the smarties. The assistant was clearly unaware of any of these incidents.
In communicating with his assistant, he took a long time to print out the exact description of the gift he had been given. Instead he typed out related words - scarf, sox etc - but did not convey an accurate description of the Tshirt until some time had elapsed and after several prompts had been given by the researcher. He also described the colour of the Tshirt incorrectly by typing several alternative colours first - blue, red, mauve etc - until he finally typed 'black'. It was noted that at the first attempt he typed 'B' and 'L' and hesitated for some time before proceeding and completing the word 'blue'.
The situation was similar when the researcher suggested that he tell the assistant what was bought in the shop. Instead of typing out 'chocolate easter egg', which was the expected response, he typed 'chocolate freddo frog'.
It was interesting to note that the client (as with Client No. 1) was often unable to access the precise word in the first instance, although he could type words from the same category, e.g. when trying to describe the Tshirt, other items of clothing were first given - scarf, sox - and 'chocolate freddo frog' instead of easter egg.
This phenomenon was also experienced with at least one other client when he typed other articles of clothing when trying to describe 'football guernsey' and other football teams when trying to describe his preferred team.
Although the client could type independently, he would often reach for the assistant's hand and place it on his. During the course of the social interchange, it was also decided to inquire of the client what was the function of the assistant's light touch of hand during typing. In response to a series of questions about this issue, the client wrote:
'I need to like you before I feel com ......'
'I get nervous .......'
'... confidence ...'
'We all get upset if work is hard.'
'It s only getting my thoughts out ......'
'... security ...'
Conclusion
It was clear that this client could communicate independently but preferred to do so with an assistant at times. This client's ability to communicate whilst using assisted communication was also clearly validated.
Client No. 3 [Boy, 13 approx]
. . . At the second session, the client was presented with the gift of a book entitled 'The Man from Snowy River' which was given to him while the assistant was out of the room. When the assistant returned, the client was asked to tell the assistant what gift had been presented to him. After some discussion, using assisted communication, about whether he would continue to participate in passing the message, (100) he subsequently agreed and responded to the request by typing the words 'a book' and 'early days'.
Conclusion
It is clear from the above message exercise that this client's communication whilst using assisted communication has been confirmed."
IDRP Conclusion
The report concluded that the validity of communication while using the assisted communication technique was demonstrated in four of the six clients who participated in the two studies, but that in all three cases of the controlled study, client responses were influenced by the assistant. That may not be correct (if the clients could hear their facilitator's questions), but even if it is so, it is surely not a reason for avoiding the use of assisted communication with people who have no other adequate means of communication. The results indicate a need, while using assisted communication, to find a means of checking with the client, for instance by using a "Yes/No" response, any message as to which there is some doubt. (101)
The report did state:
"In summary, for the clients whose communication was validated, it appears that the use of the 'assisted communication technique' has greatly contributed to their progress into regular schools." (emphasis added)
It is unfortunate that the two clients whose communication was not regarded as validated were not given the option of a message passing test. As a result of widespread misunderstanding or misrepresentation of the IDRP report, (102) it has played a major role in the cessation of the use of facilitated communication in many institutions in Victoria. Thus clients who could have communicated with facilitation and used it as a step to progress to independent communication, have lost that means of reducing the disadvantages of their disabilities.
A very worrying aspect of the whole issue of validating facilitated communication is the way in which the debate has been hijacked by those asserting a false reliance on scientific method. They claim that there must be a controlled method of checking the validity of any form of communication. That is already incorrect. Speech is not tested in a controlled sense, nor is spoken communication free of influence from those with whom or in front of whom we are conversing. Then those asserting the reliance on controlled tests propose a form of validation which introduces significant problems both in its use of technology and its emphasis on word finding skills. It is well known that the creation of a test situation frequently changes the circumstances which are to be tested. (103) The problems inherent in the test design were emphasised by defective technology. Even without that factor, Williams in her article has explained the effect a test situation can have on an autistic person:
"Such a person, in practice, may have only subconscious awareness and automatic responsiveness of self. In a relaxed flexible FC situation, such a person may be able to express fluently, receiving feedback and conscious awareness through the reading process as the words come back through the eyes. Introduce a tester with a rigid format into this situation and the FC user may be pushed to become consciously aware of his or her actions in a way they have never been able to function and this case is doomed to 'fail' the test." (104)
Facilitated communication is too important for people who otherwise cannot communicate to be abandoned on the results achieved by inappropriate testing procedures.
In the light of those comments and the positive findings as to four of the six clients seen by the IDRP, it is disappointing that the report was somewhat equivocal, and even more disappointing that it is often wrongly quoted (105) as confirming the lack of validity of facilitated communication.