Facilitated Communication Training, Chapter Ten

 

10. WHO SAID THAT?

There are many systems of communication that don’t involve speech. All of them except writing and typing have problems of interpretation. 

The most widely used substitute for speech is deaf sign. People who use deaf sign are comparatively lucky: signing is the oldest and best-known non-speech system, translation and checking procedures acceptable to users have been developed, and there is a large number of potential interpreters available. Despite these advantages, even fluent sign users may have problems being understood by most of us.

People who use other modes of non-speech communication have even more problems.in getting their words accepted In part this is because these methods are relatively new (deaf sign has been used for two hundred years, communication boards with pictures and symbols for only twenty) and in part it is because of the wide variability between users and systems. Users of deaf-sign may share little more than their deafness, but at least they share that. People who use other non-speech communication strategies do not even share a common diagnosis.– they may have cerebral palsy, for example, Down syndrome, autism, motor neurone disease, intellectual impairments, or acquired brain damage. 

The communication strategies used by non-speakers are as varied as their diagnoses. At the easy end of the scale, a relatively small number of individuals can communicate by writing or typing without any assistance other than provision of appropriate equipment. These people have relatively little difficulty in getting their messages across, although there may still be problems caused by the comparative slowness of written communication and its lack of intonation.

All non-speech communication is very laborious compared with speech. A speaker may talk at a rate of 150 words per minute. The fastest non-speaker is unlikely to achieve 30 words per minute and few would achieve more than 10. The physical effort and concentration involved in generating those words is many times greater than that involved in speech, and consequently non-speech communication cannot be sustained for lengthy periods. 

If the communication is typed it can be exact but will suffer from lack of intonation — the added meaning speakers give by tone of voice and facial expression, and which signers emulate with vivid hand movements. It may also suffer from being taken too seriously and "over-interpreted"; in our culture written communication is always given heavier weight than spoken, and what in speech would be a throw-away line or a slip of the tongue may be subject to detailed analysis if typed. 

More problems occur when individuals use systems with limited vocabularies and/or require the assistance of communication partners to get out their messages. John uses a VOCA (voice output communication aid) independently; however, the aid only contains 32 utterances, and if John wants to communicate about anything not covered in those 32 utterances he has to use approximations or answer yes/no questions. John, like other users of limited vocabulary systems, requires a questioner with the skill to elucidate the meaning of his selection. A symbol board, for example, is likely to have one symbol for all the tenses of a verb. If a user points to RUN, does he mean "I ran", "I was running", or "I wanted to run"?

If non-speaking people require some form of physical assistance or facilitation in order to use a communication aid the question often arises as to whether the words are theirs. 

Facilitated communication training is a teaching strategy used to help people with severe communication impairments develop the hand skills needed to use communication aids independently. The ultimate validation of the technique is to bring people to the stage where they can use their aids without facilitation. 

When to verify

Most individuals with severe communication impairments (severe communication impairments) will never need the consistency of individual communications to be validated formally (informal validation will take place, as it does for speaking individuals, in everyday interactions). The most obvious way to check the consistency of communication is to have the individual discuss the same topic on different occasions and/or with different facilitators. If they do so, and what they type is similar on each occasion, that means they are consistent, and the facilitators did not imagine or misinterpret the communication (although it still does not mean the communication is correct — the individual may just be consistently wrong). 

There are, however, certain situations where it is important to investigate the skills of users of non-speech communication or their communication partners:

1.            There may be some dispute about a person’s communication skills in relation to a serious matter;

            Joe, who has cerebral palsy, needs surgery, and it is doubtful whether his communication through his symbol board is adequate for him to give informed consent.

2            There may be some dispute about the influence of a particular facilitator or communication partner on a person’s communication in relation to a serious matter.

            It’s accepted that Mary, who has motor neurone disease, can communicate using a Canon communicator with arm support. Mary is very fond of her brother John. John says that Mary wants to give him a large sum of money. There is concern that when Mary is typing with John as her facilitator he influences the communication.

3.            In a particular situation there may be a need for a particular communication partner to establish that they have the skills needed to enable a person to communicate without help or hindrance.

            George is studying for his VCE. He usually communicates with little or no facilitation by typing on an adapted keyboard; however, the mathematics he is studying cannot be done on a typewriter keyboard, and he will have to use a special communication board with facilitation. It is thus important to ascertain that his facilitator does not influence his answers, and that, on the other hand, his facilitator has enough mathematical knowledge to be able to transcribe his answers in the appropriate format.

These three needs for verification are all non-controversial, and all clearly benefit the communication aid user. A dispute about whether the individual can communicate at all is adversarial, and different considerations will apply.

The best way of establishing the level of receptive and expressive language available to the individual is a detailed speech-language assessment by a therapist with experience in both non-speech communication and the individual’s disability. The role of such an assessment is to establish levels of communication. It starts with a presumption that the individual is able to communicate, and endeavours to establish the extent of that communication. 

Occasionally a speech-language assessment will show that an individual’s skills have been over-estimated — it is possible to interpret randomly hit symbols or letters as a meaningful utterance, or to ‘improve’ someone’s communication. More often, such an assessment will show that the non-speaker’s skills have been under-estimated or under-used. In the last decade there have been enormous advances in the techniques and technology used to assist individuals with severe communication impairments; however, these are not yet in widespread use. The large majority of non-speakers are not receiving specialist intervention and are likely to have undeveloped communication potential. 

No-one should be blamed for over-estimating or under-estimating the non-speaker’s skills — rather, every effort should be made to find strategies that do enable the individual to communicate and participate in decision-making to the best of his or her capacity.

Excluding the possibility of partner influence is difficult and time-consuming. It is only necessary if the communication aid user is going to sit an exam or give evidence and needs an accredited communication partner. One-off decisions or statements can be checked more satisfactorily by using multiple partners than by accrediting one partner. The problem of verification in such cases is obviously reduced if the non-speaking person can hear or read and can unambiguously signal yes and no, in that then they can be asked whether the utterance produced is indeed what they wanted to say (1). Unfortunately, while most people using facilitated communication can read or hear, many do not have clear and unambiguous ways of indicating yes and no without using their communication aids.

In serious matters an independent facilitator or interpreter should be involved as early as possible (with the permission of the non-speaking person):

a.)         in order to validate the original facilitation or translation (a check on accuracy and replicability);

b.)         to ensure the non-speaking person has an opportunity to communicate via someone with no interest in the case (a check on undue influence);

c.)         to assess the practical and legal problems involved in the person giving evidence if court proceedings are involved.

In some instances it will be discovered that there is no communication partner available who is not involved in the matter at issue. What to do in this situation is a matter of judgement. If the matter is important, or court proceedings are likely the only solution may be to train another communication partner (again, with the consent of the non-speaking person).

No qualification such as an interpreter's certificate exists in non-speech communication, and even if it did the range of communication systems and individual variations is so great that it is difficult to imagine that one individual could hope to have the skills to assist all non-speaking individuals. Because a common system of non-speech communication does not and cannot exist, most non-speaking people who do not type or write have a relatively small number of people to whom they can communicate freely. People who are deaf have gained the right to use the interpreter of their choice in court, and this precedent needs to be applied to the situation of people without speech; everyone has his or her own communication style, and it is easier to get your message across to, or via, some people than others. If the impartiality of the chosen communication partner is an issue, other strategies for checking the communication aid user’s output may need to be used.

The most common reason to try and ensure that communication partners are not affecting the student’s output (for better or for worse [2]) is of course the needs of the classroom. If the partner needs specialist knowledge, such as the ability to set out maths problems, then that should be checked by the appropriate specialist, such as. the maths teacher. If the concern is to ensure that the student is able to do the work various strategies may be used.

Lyn sat her VCE Economics exam with a communication partner who had left school well before VCE and who had never studied Economics.  Tina, who can type very slowly and laboriously without facilitation, did one exam question without facilitation and the rest with facilitation; all her answers were of a similar standard, and it was accepted that this did represent Tina’s real level of achievement. Marc needs facilitation to type but can point to multiple choice answers without facilitation — his exam answers were checked by the administration of a multiple choice test. Bob typed his History essays with different facilitators; however, the standard and style of all the essays were consistent, and were different from the styles of his facilitators. 

Strategies such as these may help convince other people that the work is the student’s own, but in the end the issue is likely to come down to the integrity of the facilitator(s), as it does in any situation where a student is working closely with another person – an amanuensis, for example, or a deaf interpreter. It is important to ensure that the student is not further disadvantaged in the search for verification. Lyn passed her VCE and applied for university entrance, but one university said they would only accept her only if she did an additional test, devised by a psychologist, to prove she could type. At the other end of the scale, when Sam, aged 6, was using a typewriter for the first time his integration aide was not allowed to facilitate him for fear she might help him! In both cases the compulsion to test outweighed the central purpose of education, which is to teach.

Adversarial Testing

The fourth situation in which verification of communication is required comes about when someone is affronted by something the communication aid user has said, or, indeed, affronted by the very suggestion that they can communicate anything at all. Anne McDonald was admitted to an institution at the age of three and labelled as profoundly retarded. When she turned eighteen and said she wanted to leave, the Health Commission opposed her departure on the grounds she could not communicate. Anne’s application for Habeas Corpus was heard in the Supreme Court; the presumption of competence applied, and she was released without special testing. She is now in the process of completing a degree in humanities. ‘Carla’ was labelled as severely intellectually impaired. In her twenties, she alleged that family members had mistreated her. She was given elaborate validation tests. The results of these tests were presented to the Guardianship Board, which decided that she was unable to communicate. After the case her family withdrew Carla from her day programme, and she now stays at home all day with no means of communication.

The cases of Anne and Carla have several elements in common; neither woman can speak, both used communication aids to say things that their caregivers did not want to hear, and in both cases the caregivers responded by denying that the women had any ability to communicate. Each case was adversarial, in that there were individuals involved who hoped or believed that Anne/Carla could not communicate. Anne could do nothing independently, and was totally dependent on testing to demonstrate her capacity. Eventually, she passed a validation test and a reading test (the Health Commission tried to hide the test results, but they came out in court). Carla was also given tests, and failed them.   She could have demonstrated her capacity by using a communication aid independently, but the Guardianship Board refused to see her do so. At the end of the day the common law served Anne well, and the special law served Carla badly. If Anne had been set Carla’s tests, would she have been released? If Carla had not been tested, would any harm have been done [3] – any harm, at least, comparable to what has occurred to Carla as the result of her test failure?

In adversarial validation only one question is being asked: can the person to use his/her communication aid or strategy effectively? There will be a number of people involved who hope he/she cannot. Tests may be administered or suggested by people who hope the aid user will fail. Hostile observers may be present at testing sessions. In most cases [4] the aid user has everything to lose and nothing to gain from test participation. If they pass, nothing will change. If they fail, they may lose what little in the way of communication they have.

Incompetently done testing can have tragic effects.   A test that does not take into account the life experience of the people being tested, however objective it may look, will still be unfair. Seventy years ago the Australian Immigration Department enforced a discriminatory policy of excluding certain racial groups. It did this through a simple objective measure – the dictation test. Under the Immigration Act any potential migrant could be asked to undertake a dictation test This was, on the face of it, a measure designed to guard against the admission of illiterates. However, the Act didn’t specify the language of the test. People whose skin wasn’t the right colour were given tests in languages they didn’t know, and when they failed the test they were excluded. Indian professors educated at Oxford failed tests in Gaelic. For every one of us, there are more tests we will fail than tests we can pass.

If this is true for people without disabilities, it is much more true for people with disabilities. Whether people with disabilities are able to demonstrate their skills will to a large extent depend on the type of tests they are given. Anne, a quadriplegic, was assessed as profoundly intellectually impaired on a test which required her to build a 3-block tower. Karen, a schoolgirl with cerebral palsy, failed the end-of-year tests because her teacher refused to let her use a typewriter on the grounds that it would give her an unfair advantage. An unfair disadvantage, apparently, was no problem.

In the nature of things it is impossible to prove a negative. That oyster doesn’t look like the kind that has pearls, most oysters don’t have pearls, I’ve never seen an oyster with a pearl in it; all of these may be true but they still do not prove that there isn’t a pearl in this oyster. It is vital to remember this when testing someone’s ability to communicate. The aid user may not have proved that he or she can communicate. You certainly have not proved that they cannot. 

The issues of consent and co-operation are central in adversarial testing. As a general rule people should not be tested without their consent. Every effort should be made to obtain informed consent before testing. Obviously there will be problems if consent can only be given or withheld by using the contested communication strategy. However, if an individual is held not to be competent to refuse consent, he or she is correspondingly incompetent to give consent. Whatever the consent situation, it must be recognised that testing undertaken without co-operation is valueless.

Because of these considerations, and because validation testing is complex, time-consuming and stressful, it is advisable to look for evidence of communication in everyday interactions before resorting to formal tests. The individual’s everyday communication may be examined for evidence which indicates that the words are theirs. Does the person always talk about certain topics, or use specific idioms, or mis-spell certain words regardless of who is facilitating? Lyn has a very individualistic style, starting a high proportion of sentences with adverbs and using certain favourite idioms and words such as. ‘weird’, frequently, regardless of who her communication partner is. Does the person tell his facilitators things they could not know otherwise, things that have happened when they weren’t around? When Joe told me that they’d had a bad trip down because they’d nearly hit a car, and his driver said that was true, Joe was set fair to validate his communication.

Too often this form of validation is overlooked. It must be remembered that a few instances of successful communication are much more significant than many ‘failures’. If Joe hadn’t told me about the near-accident there would have been many possible explanations — he’d forgotten, he didn’t want to embarrass the driver, he didn’t think it important, he couldn’t find the right words, etc. But when Joe did tell me about it there was only one possible explanation; he was communicating, and I was receiving the communication. 

If such instances of incidental validation do not occur spontaneously it may be possible to structure a situation to make them more likely. Gina was being asked to name pictures not seen by her facilitator and was not doing very well. An hour and a half after testing had started, she spontaneously typed something about wanting another present.  She went on to tell her facilitator that the psychologists undertaking the testing had given her a candle before the testing started. This was confirmed, and provided much better evidence of her ability to convey information unknown to her facilitator than her performance on the confrontational naming task.

If aid used is a typewriter or alphabet board, the basic skills involved are reading and spelling. Reading skills may be demonstrated by administering standard assessments which do not involve use of a communication aid or facilitation — the administration, for example, of multiple choice reading tests such as the Reading Comprehension Battery for Aphasia [5]

If a demonstration of spelling skills is necessary, and the person is not able to select letters without facilitation, then there are informal procedures available that may be appropriate in some cases – answering a question or passing a message not known to the facilitator, for example, or describing items which are out of sight of the facilitator. These strategies can also be used with symbol or sign based communication. If the issue is relatively straightforward – Ben’s father does not believe he can really be typing, say, because his hand is being held – then successful use of such a strategy may well defuse the issue before it becomes a major concern. Before testing, especially in the early stages of a communication training program, it is important to explain that failing such a test does not mean that people cannot or will not be able to use that communication strategy. What it shows is that they or their facilitators do not currently have the skills necessary to pass the test.

Which verification strategy is appropriate will depend on factors such as visual and auditory memory, maturity, and language skills. The skills needed can be developed in regular teaching sessions and the procedures administered quickly, with minimal stress and no requirements for specialised settings or equipment. The competence of the facilitator will be a significant variable, as will the length of time the individual has been in the training program. Failures should be investigated and the tests repeated after further training, possibly in a different form or with a different facilitator.

Informal questioning can also be used to provide a useful indication of a facilitator’s skills — I play Chinese Whispers with communication aid users who are known to have good skills, whispering messages for them to relay to their facilitators. Success boosts the confidence of the facilitator and failure indicates a need for more training before that facilitator is used for any important communication tasks. It is important that tests of student facilitators are not combined with tests of student aid users, because if the outcome is a ‘fail’ it will not be clear who has failed, the user or the facilitator. Equally, any testing for facilitator influence should only be undertaken after a user has demonstrated his or her basic capacity to use the communication system. Any facilitator used in formal validation testing should have previously demonstrated the ability to facilitate by successfully facilitating an aid user during informal testing. 

When to validate?

No communication partner or person with severe communication impairments should be asked to undergo formal validation testing until they have completed basic communication training (as assessed by the agency overseeing the communication program); otherwise all that negative results will show is that the person has not learnt what they haven’t been taught. Similarly, validation testing is completely inappropriate until the communication aid user is communicating freely and fluently with at least one partner. Facilitated communication training is, as its name implies, a training method. Training in non-speech communication strategies takes time — therapists suggest that it can take six years for basic competence to be achieved in the use of ordinary communication aids [6].
   

How to validate?

Validation protocols

The assessment of communication, in any mode, is not normally the job of psychologists — certainly not of psychologists working in isolation. Any protocols for validation assessment of non-speech communication should be developed by a multi-disciplinary team with expertise in the various communication strategies to be assessed. Once developed the protocols should be circulated to relevant professional and consumer bodies for comment, and them amended if necessary. In Australia relevant bodies include AGOsevere communication impairments (the Australian Group on Severe Communication Impairment), AASH (the Australian Association for Speech and Hearing), and CAUS (the Communication Aid User’s Society). More than one validation strategy should be accredited, to cater for the different abilities and disabilities of people with severe communication impairments (some people cannot wear headphones, for example, and some people have short-term memory problems). 

Preliminary screening

Before formal validation testing is undertaken subjects should have had

-             an assessment of hand function by an O.T.

-             a literacy assessment using a multiple choice test [7]. The results of such a test would certainly have bearing on the future use of spelt communication, regardless of any negative results on validation testing. 

-             a speech/language assessment   If you do not do speech/language assessments prior to testing you cannot know whether it would ever be possible for a given person to do the tests you are setting. 

Preliminary training

Trials at DEAL have shown that clients improve their performance on validation tasks with practice. Performance steadily improves, despite the questions being different each time, presumably as the clients become more at ease in the test situation and develop whatever skills are necessary to succeed. Practice of this nature is especially important if the chosen validation strategy involves significant interference with the procedures of everyday communication. For example, before anyone is given any test involving headphones, they need to practice receiving instructions through headphones. If a person does not respond to everyday instructions given via headphones they should not be given test questions via headphones.  (Equally, if they do not respond to everyday instructions given by a particular examiner they should not be given test questions by that examiner.) If the receiver only is to wear headphones, the receiver should practice wearing headphones in regular communication sessions with the person and observe what effect, if any, this has on communication.  

Environment

The aid user should also be familiar with the environment in which the test will be conducted. Testing will ideally take place in the aid user’s regular setting — school, day centre, or residence.

The effects of environment were demonstrated in an Australian court case[8] when a witness who typed with facilitation was brought into court to show how she communicated.   The prosecutor had previously seen the aid user type successfully while her facilitator looked away, but he had overlooked the influence of the courtroom and the presence of the accused on his witness. Her facilitator was asked to look away from the keyboard while the witness was typing. The witness also looked away from the keyboard (at the accused) and, not surprisingly, rubbish resulted.

People with severe communication impairments often have associated or secondary impairments which make them especially vulnerable in testing situations. The most obvious problem is lack of self-confidence together with lack of social experience — many people who can speak can be rendered mute by aggressive questioning. Anyone with spasticity could be rendered so tense as to preclude communication altogether. People with less well known problems may also have their ability to communicate sabotaged, accidentally or deliberately. Some people with neurological damage have hyper-active startle reflexes — they go rigid (and some may actually convulse) when there is a sudden noise, such as the click of the switch on a tape recorder. Others are visually disinhibited; that is, they cannot stop themselves from looking towards anything that moves within their field of vision. Their communication would be affected if the observers kept shuffling their papers while they were trying to type or point.

Formal validation testing

The special needs of each person must be taken into consideration when devising validation testing. The person who does not have word finding or recall problems may be able to respond to message passing as a method of validation, but not everyone can handle this particular test. Anne could, Carla could not. Some people require a cue to be constantly present; in these cases a tray of objects may be presented and one singled out for the person to point to or spell with the communication partner when he/she comes into the room. Others, who have difficulty with specificity, may be able to recount the general theme of a story which is read and visually tracked with them whilst their partners are out of the room. Alternatively, they may be able to type a variety of words associated with a given theme such as 'holiday' or answer questions about the attributes of pictures that their partners cannot see. Because word-finding problems are common, every effort should be made to avoid questions answered with names or nouns — “What can you do with it?” is a better question than “What is it?”

One frequent assumption, based on ignorance, is that if an aid user cannot pass messages they cannot communicate. That is a total absurdity. There are many people who can speak and/or type totally independently who cannot pass messages, or who can only pass messages after many rehearsals. 

‘Carla’, who has major word-finding problems, was tested by three psychologists for 11 hours. The most significant test involved Carla answering 40 questions. The answer to every question was a noun. What are the hardest words for people with word-finding problems to retrieve? Nouns. When is it hardest for people with word-finding problems to retrieve nouns? When they are placed on the spot, and have to give a specific answer quickly. Carla failed the test. It might as well have been in Gaelic [9]

It is vital that if validation of communication is sought that

  1. the partner is trained and experienced with the facilitated communication method;
  2. the client has previously communicated fluently with that partner;
  3.  the client is satisfied that there is a genuine reason for the validation being sought and gives consent to the procedure;
  4. the client has experience with the validation task required and has demonstrated the skills required by the testing procedure.

Whatever the strategy used arrangements must be made for frequent repetition of questions. Because the process of spelling an answer is lengthy, and the short-term memory status of most people with severe communication impairments is unknown, this is vital.

It must be emphasised that no one test can be given a special privileged status. If evidence is presented that purports to show that a person can communicate, valid reasons must be given for disregarding it. It is not enough to say that any tests other than tests approved and administered by one team are invalid — evidence must be produced as to why they are invalid. Some tests, such as answering a question, naming a picture or typing a given word completely unknown to the facilitator, have such a low probability of chance success that a single correct performance is enough to validate the person’s ability to use his/her communication aid. Bruce was asked to tell his facilitator, who was out of hearing, the name of his house. The facilitator had no knowledge of the question, so when Bruce typed “I always have difficulty remembering the name of my house.” that validated his ability to type with facilitation, as well as confirming that he had a word-finding problem.

The importance of one success needs to be emphasised, and may need careful explanation to people unfamiliar with testing null hypotheses. In adversarial situations there is a tendency to set arbitrary levels of performance that have nothing to do with the central question which is “Can this person prove he/she can use this communication aid by communicating one thing unknown to his/her communication partner?” Bruce was tested repeatedly — sometimes he answered questions correctly and sometimes he didn’t. The people testing him seemed to be operating on the basis that a score of 50% was necessary for a pass. On his last test Bruce scored very badly. This score was seen as outweighing his earlier successes and he was judged to have failed validation.

Validation — what do you do when someone fails a test?

One aspect of facilitated communication that causes concern is that of facilitator influence or cueing. To say that all of an individual’s communication is tainted by facilitator influence it is necessary to test every facilitator that the individual has communicated with — it is not scientific to say that because it was shown that facilitator A cued the client’s communication, facilitators B, C, and D therefore also cued communication. Even facilitator A may not be providing cues all the time.

It is important not to over-react. It must be recognized that we all influence each other, consciously and subconsciously. There is nothing horrifying or surprising in the discovery that two persons working together to try and establish communication under difficult circumstances will take cues from one another. This is only a cause for anxiety when it appears that all the communication of that person is created by cueing, or when particular (and important) utterances are suspected of having been cued. In any case, the discovery of cueing should be the signal for further training of both the person and their partner.

Carla was given an inappropriate test and failed it. Unfortunately for Carla, it wasn’t the dictation test and her failure didn’t have the relatively minor penalty of not being able to live in Australia. Rather, she has been isolated from her friends and from access to any non-speech communication. We might as well have cut out her tongue. She will certainly never be able to complain.

Bruce’s test results were mis-interpreted and he was banned from typing. Again, he is unable to complain.

This raises the most important issue in testing. What do you do when someone fails? Again, it is important not to over-react. Failure on one test, or even several tests, does not prove that someone cannot use the communication strategy being tested. It is necessary to examine the variables, and see what could have gone wrong. 

Did the person want to do the test — did they try? Was the test appropriate, or did it require language and memory skills which may be impaired? Was the facilitator up to the task? Was the person thrown by the whole procedure? How invasive was it? Had they ever done anything like this before? Allow more practice and change some of the variables. Meanwhile, look for everyday validation. 

Most people who use facilitated communication will never have to go through any particular validation procedures. Some clients who now type independently were never called upon to validate their communication while they were receiving facilitation. Other clients who now type independently failed validation testing when they were facilitated.   Doron did the same test as Carla and failed it. He refused to co-operate, in fact, and sat there typing ‘xxxxxxxxx’ for half an hour. He went on to make his Bar Mitzvah, is now in tenth grade at regular high school, and types, when he wants to, without anyone touching him or being in the room with him. What is important – his test result, or what he’s done since? If his communication program had been terminated as a result of his test failure, he could not have made his Bar Mitzvah or undertaken the regular high school syllabus.

A psychologist asked me why Gina was in the facilitated communication training program. “She’s talking pretty clearly and she points beautifully” he said. Yes, she does (though her speech is still not adequate for her to tell her facilitator that she’d been given a present, much less what it was). But she didn’t when she started in the program 4 years ago! If she had been tested at the start of the program and failed what would it have proved — that she didn’t have the skills that we were about to start teaching her? The answer to the question 'What do you do if someone fails?' should be 'Give them more training.' This is an educational program. People won’t have the skills at the start that we hope they will have at the end. The goal of facilitated communication training is independent use of a communication aid. The facilitation is used to remedy hand function impairments. These will not be remedied by withdrawing people from the programme. The issue should not be the facilitation (though obviously that needs regular review, to ascertain whether users are improving) but the choice of communication aid/strategy. 

It is absurd and unjust to deny someone access to communication training on the basis of failure to validate communication. It would be the equivalent of banning 18 year olds from driving for life if they failed their first driving test. The communication program may have a validity completely separate from the validation of a person’s communication. Gina learnt to point and her speech increased. Doron benefited by the increase in his attention span from a minute to an hour and the improvement in his eye/hand co-ordination. Maria started to initiate interactions for the first time. 

We are just learning about the real language, memory, neuro-motor and concentration impairments of people with severe communication impairments. These certainly affect their ability to undertake various kinds of tests. What we need to work towards is a situation where people take a rational attitude to the communication of people starting to communicate with facilitation and are prepared to work through the various problems that can occur. 

The content of specific communications may have to be treated with caution, pending proof that they did come from the aid user, but lack of proof is no reason to prevent the person continuing to use non-speech communication. A variety of communication strategies may be used in the hope that the user will find one easier to confirm or to use independently than others; however, failure to validate communication using a particular strategy is no reason to drop that strategy from the list of options, especially if that strategy offers more communication potential in the long term. For instance, spelling is the only way in which people with severe communication impairments can say exactly what they want to say. It is consequently reasonable to expend considerable effort in developing spelling and typing skills in people with severe communication impairments – as much effort, at least, as is devoted to developing literacy skills in non-disabled children.

Because communication is so important – the most important need for humans after food, shelter and love – the benefit of the doubt must always applyMany speech impaired people spend a life time being tested and asked to comply with the wishes/instructions of speaking people. Validation testing can be intimidating, stressful and counterproductive — use it cautiously and sympathetically!

 


[1] This would in fact provide more verification than is usually available with foreign language or deaf sign interpretation, where in the nature of things there is no way to confirm with the speaker or signer that the translation is correct.

[2] Most commonly, people worry about the facilitator giving assistance, and the fact that facilitators can also hinder communication is often overlooked.

[3] Carla’s allegations would have been left in the hands of the police, who would have been unlikely to proceed given the lack of confirmatory evidence.

[4] Anne McDonald was obviously an exception; she had more to gain than to lose. Interestingly, during a later Supreme Court case she objected strenuously to being tested, despite having everything to gain from completing tests which were far less arduous than Carla’s.

[5] La Pointe,J. (1984) Tizard OR, USA, CC Publications

 

[6] Haney,C. (1988) “Communication device today, competency tomorrow: Are we being realistic in our expectations?” Assistive Device News, 2, 5-6

[7] Print size and multiple choice presentation may need to be varied to cater for visual impairments and to allow for specific selection problems as shown in the O.T. assessment.

[8] Police v Williams, Moe Magistrates Court, May 1990

[9] To compound Carla’s problems 20 of the questions were asked via earphone, with no check that Carla could hear, and her facilitator was untrained and had no test experience.

Back to Chapter Nine

On to Chapter Eleven

 

 

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