Severe Communication Impairment, Facilitated Communication, and Disclosures of Abuse 1. Severe Communication Impairment A large number of children and adults with diagnoses such as intellectual impairment, autism, or severe cerebral palsy have no usable speech and cannot use sign language. People who are unable to communicate are obviously at increased risk of abuse. 2. Facilitated Communication Training Facilitated communication training is an educational technique intended to allow people who cannot speak or sign to access communication devices. One person (the facilitator) provides support to the arm, wrist or hand of another person who is thus enabled to control their pointing sufficiently to point to pictures, words or letters. Support should be faded back as non-speaking persons improve their pointing. The ultimate aim is independent communication, but the need for support may persist for many years. People with severe communication impairment have previously been thought to be unable to communicate because their intellect was insufficiently developed. The conclusion being drawn from the reported successes achieved through facilitated training is that these people have neurological defects of the same kind as those enumerated in post-trauma cases - apraxia (motor planning problems), aphasia (word-finding problems), disinhibition, and problems with initiation and perseveration - that do not necessarily affect their ability to process information and which can be evaded in whole or in part through accessing a different output channel. Once offered the opportunity many students with a variety of diagnoses have been able to demonstrate unexpected literacy and numeracy skills concealed by such things as poor motor skills and motor planning problems. Giving a voice to a group of people who have long been silenced challenges many of our preconceived notions about what kinds of needs they have and how we should meet them. Having a voice also means that people are able to speak out about what has happened to them in the past, and many people have used their new ability to communicate to make statements about past and present abuse. Many such incidents have already reached the reporting system, more are reported each week, and as the use of this method spreads such disclosures will become still more common. Some can be confirmed by independent evidence, some cannot be; some may not be accurate. All require serious attention. Allegations of abuse can present difficulties even when accusations are made by people who can speak and are of full age. Accusations made with facilitation encounter these difficulties and present others of their own. They provide many challenges to existing educational, legal, and social support systems. 3. Disclosures of Abuse through Facilitation Dealing with complaints made through facilitated communication may be seen as a series of decision points. At each point it is necessary to consider a) what decisions must be made; b) who should make the decision; and c) what decision-making processes would be appropriate, including i) what considerations should be taken into account, and ii) what persons or bodies should be consulted? At each stage, the person who has responsibility for the decision must both consider the problems that emerge for the first time at that stage and review what has been done at all the stages that have gone before. At each stage, also, the person will require counselling and support (see appendix 1). "Can the person communicate through facilitation?" *The facilitator has followed recommended communication practices, as set out in the literature (see appendix 2) and the person has apparently spelt out messages.* It is possible to be mistaken about this, and once the training is under way it is important to confirm at some stage that the method is working as intended. This can be done through incidental message passing (where a person reveals information that others can verify but which was not known to the facilitator), through idiosyncratic language use (where a person uses the same idioms or spellings with several facilitators), or through having two facilitators independently receive the same message. If this hasn't yet been possible - where, for example, the person's first message is about abuse - something like it may have to be done at a later stage. Other laboratory-based tests involving such methodologies as shielding the facilitator with earphones have been proposed. Because of the continuing problems that these people have with initiation, motor planning, and wordfinding under pressure, such tests are seldom appropriate or successful. Such tests do not adequately provide for the effects of the disabilities such as apraxia, aphasia, and disinhibition that have till now been masked from us by the assumption of retardation. These disabilities not only render existing tests inoperable but place immense difficulties in the path of *any* formal testing. Message-passing is often the best available test, although even then allowances may have to be made for people with word-finding problems who can give a message in general terms but not in its exact words. "Has an allegation been made?" *The facilitator has received a message through facilitated communication that seems to relate to abuse.* Allegations of abuse have to be reported; all states now have mandatory reporting requirements, and facilitators should make themselves familiar with the requirements of their own state's legislation. It isn't the business of the facilitator to decide whether the allegation is true, or even if it's credible; it is important, however, to make sure that what the person actually wants to say is in fact an allegation. Facilitated communication is never as fast or as fluent as normal speech. Messages tend to be short, even telegraphic, and may omit grammatical bridges. It is not always clear what message the person is trying to get across with the words he or she has spelt out. > The message may be incomplete; One person spelt out MY FATHER IS FUCKING ME - clear enough,you would think, if the facilitator hadn't carried on to get MY FATHER IS FUCKING ME AROUND. > The message may be telegraphic; One person spelt MY FATHER FUCKING CUNT and meant MY FATHERIS A FUCKING CUNT > The message may be inherently ambiguous; One person spelt MOMSEXBOYFRIENDME, which can be read eitherMOM SEX BOY FRIEND ME or MOMS EX-BOYFRIEND ME. These are different messages (and neither of them is clear). > The letters or words chosen may not be those that the student really intended The person may have wordfinding problems (see appendix 3).Difficulties with word-finding do not necessarily affect understanding or processing of spoken or written material, but can mean that the person is unable to think of the right word for what he or she wants to say and has to give another related word instead. Care must be taken that asking of clarifying questions does not turn the receiving of a disclosure into the kind of interview more appropriately conducted by law enforcement investigators. It is impossible to lay down firm rules, but facilitators should be aware of the possible complexities involved. It is also essential that clarifying questions are not leading questions and do not suggest what the person's response should be. In several cases what have seemed to be allegations of abuse have in fact been the result of people with communication impairments answering yes to leading questions. One disturbed student with self-administered bruises was asked "Your dad hit you, didn't he? Why did he hit you?" When he answered "Yes" there was an investigation. The police determined that no such abuse had taken place, and that he had merely been giving an inappropriate response to a series of leading questions. > The student's knowledge of the vocabulary may be defective. One Australian student typed out that a policeman had raped her mother. On questioning it turned out that Lyn thought raped meant the same thing as flirted with. (Such a usage should, of course, give rise to further inquiry.) "Has an allegation been made?" *The investigator has received a report of an allegation of abuse.* One facilitator can in any given case be mistaken, or can be influencing the person, and as a precaution it is helpful to have the message repeated to a second facilitator. If this is not immediately feasible a decision has to be taken as to whether the situation will allow any decision to wait until a second facilitator can be introduced. If with a second facilitator the message is confirmed in detail then it may be taken as confirmed that an allegation has been made. "Is the allegation credible?" *The investigator has decided that an allegation has genuinely been made.* The protective agency must apply the same standards to the case as it would apply to any other case. It must neither downplay the testimony nor treat it as somehow more reliable because it is in print. It must be emphasized that validation of the communication does not mean validation of the allegation. Many people behave as if because an allegation has been typed it is true, and, as a corollary, believe that if it turns out not to be true then that means that the person didn't type it. People who can type can also - sometimes - lie or make mistakes, just like other people. The slowness of facilitated communication presents obvious problems in investigating a complaint. Someone using facilitated communication may be able to type 150 words in an hour, and may only be able to work for a few hours each day. This would be the equivalent of only a few minute's speech, and it may take some time to get a quantity of data together for examination. "Does the allegation appear to be true?" *The investigator has carried out an investigation and collected all available evidence.* Some persons making allegations have been able to provide supporting information that confirmed their account. Some persons have supporting witnesses; one case in a Syracuse school was also reported by some of the person's schoolmates, and the perpetrator made and signed a confession. Some other evidence can be collected by normal investigative means; in one case the boy and the alleged abuser were suffering from the same sexually transmitted disease. In cases where the person's statements has to stand alone then its credibility must be assessed by normal standards. "How should the case be handled?" *The prosecutor has received a report suggesting that there is evidence of abuse.* As the questions above show, there are going to be obvious evidentiary problems. There will also probably be problems to do with the limited life experiences of these people. Facilitated communication is slow and laborious, and a beginning typist may type fewer than 150 words in an hour. They may well have used only a few thousand words in their lives to date, an allowance that would last an ordinary person a week. Their communication training will have been conducted in an atmosphere of encouragement and acceptance, and their communication may well deteriorate considerably under pressure. If the facilitator increases support to compensate for the greater difficulty this may lead to other problems. Even if it has been established (by say, message-passing between two facilitators) that the person with communication impairment can communicate, and even if it has been established also (by the use of several facilitators) that the person did make the allegation, it still remains hypothetically possible that a facilitator could still influence the output of the person in subsequent communication. There is no way to monitor a facilitator's work in a particular situation while it is going on. This is an inherent feature of the use of the method, and in this respect FCT resembles the use of an idiosyncratic sign language system. The reporting of abuse through facilitated communication has already allowed many people with communication impairment to challenge their exploitation. The process of establishing abuse is complicated and challenging, and if proper procedures are not followed the outcomes may be confused and unsatisfactory. If done correctly, however, facilitated communication training has the potential to be an immensely powerful tool for people who until now have been denied the protections others take for granted. Chris Borthwick Missy Morton Doug Biklen Rosemary Crossley 11/9/92 Appendix 1 DISCLOSURES OF ABUSE THROUGH FACILITATED COMMUNICATION: GETTING AND GIVING SUPPORT *When someone first tells you she or he has been abused* Through facilitated communication, many people have been able to tell us their aspirations, thoughts, and feelings. We've learned how well people can do at school work, that they can write powerful and moving poetry, and comment on local and world events around them. But not all of the news is good. Through facilitated communication, some individuals are starting to talk of terrible things that have happened to them; that are sometimes still happening to them. This memo attempts to address some of the issues raised when people first start telling of abuse they are, or have been experiencing. *Mandatory reporting requirements* People who use facilitated communication to talk have the right to decide with whom to converse. Everybody has the right to confidentiality. However, facilitators who work with children are covered by *mandatory reporting requirements*. When children disclose abuse, facilitators or listeners MUST follow the mandatory reporting requirement procedures. Different states have different reporting procedures. Please be sure to learn what these are in your state. As the facilitator you can still tell the person what you have to do and why you have to do it, so that you are always keeping the person informed about what will happen next - to the best of your ability. Tell the individual that you will need to tell someone else (e.g. the principal or school nurse) about what you have been talking about. It's important that they not have any more surprises, and have as much control as possible. To be able to give them the best information possible, you'll need to find out what happens in your area. The different agencies you'll come into contact with might have pamphlets that describe what they do - be sure to ask. However hard all this seems, telling is the right thing to do. *Don't make any promises you can't keep* We might want to be able to tell the person "Don't worry, you'll never have to see (abuser) again." or "I won't ever let this happen to you again." You cannot guarantee this, or even that the abuser isn't the first person he or she will see after telling you what has happened. What you can promise is that you will tell the people you need to tell, that (usually) you will be there for the person to talk to again, that you will do your best to make sure that they always know what is going to happen next e.g. when someone might come to interview them, when their parent(s) might be told, etc. *No leading questions: Use your very best active and attentive listening skills* Leading and closed (yes/no answers) questions are poor listening habits. Asking leading questions will jeopardize any possible prosecution. You might ask the person to type a word again if you are genuinely unclear about what the word is - in the same way you would usually ask for clarification. Avoid all 'yes / no' type questions while the person is telling you what has been going on - especially around asking for names or dates, or trying to guess what actually has been happening. This type of questioning forces the conversation in the direction that you want, rather than the person having control over what and they say and how much they want to reveal, at her or his own pace. Being able to choose how and what to say gives back some control to the person about what they have been experiencing. Let the person tell you how she or he feels - don't tell them what they 'must be feeling.' You might guess wrong. Secondly, for some people with echolalic language (echoed speech and/or echoed typing), mentioning names, places, times, events, can make it very difficult for them to tell you, or later someone from law enforcement services, what really happened. *The people responsible for conducting an investigating interview are those from law enforcement services* It is not your job to decide if the person is telling the truth or if there is a case to be prosecuted. While one way to validate a disclosure is for the person to independently tell another facilitator, don't wait for this to happen to report. After reporting, you might suggest that another person that doesn't know of the situation act as the facilitator during the formal (e.g. police, CPS) interview - though this must be someone who is already a skilled and experienced facilitator; and preferably someone the person already facilitates with. Think about how many times we are making the person tell their story - is one more to convince us really necessary? *Be supportive* Talking about abuse is hard work. The look on your face, your tone of voice, posture and the type of questions you ask are all very revealing. You may feel angry, disgusted, distraught or even disbelieving - all of which are okay to feel, but it is NOT okay to express these while the person is telling you about what happened to her or him. For this moment focus on what the person is telling you - if you are trying really hard to understand, it will show in your face and body. Some helpful and supportive things to say are to tell the person that: talking about this is really important; it can be very hard to find someone who believes you; I'm glad you felt able to tell me this; that whatever happened it was not your fault. *Get support for yourself* Listening and supporting someone talking about abuse is hard work. Do you know someone who can be a non-judgmental listener? Someone who can put their needs and feelings aside long enough for you to talk about yourself? Someone who *won't* say things like, "You didn't really tell them that did you?!" or, "You shouldn't feel that way." Most Rape Crisis centers have a hotline that *you* can call *as a support person* to someone who has been abused - for suggestions on what you can do or say, to talk to about your own feelings about what you've heard. When talking about your own feelings, you can avoid going into details and breaking confidentiality - you can do this by focussing on your own feelings. Missy Morton Facilitated Communication Institute Syracuse University Division of Special Education and Rehabilitation 364 Huntington Hall Syracuse NY 13244 May 1992 Appendix 2 11/92 Facilitated Communication Training: A Bibliography Barnes, E. & Lehr, R. (1992). Including everyone: A model preschool program for typical and special needs children. In J.L. Roopnarine and J.E. Johnson (Eds.) Approaches to early childhood education. New York: MacMillan Publishing Co. Beukleman D.R. & Mirenda, P. (1992). Augmentative and alternativecommunication: Management of severe communication disorders in children and adults. Baltimore: Paul H. Brookes Publishing Co. Biklen, D. (1990). Communication unbound: Autism and praxis.Harvard Educational Review, 60, 291-314. Biklen, D. (1992). Autism orthodoxy versus free speech: A replyto Cummins and Prior. Harvard Educational Review, 62(2), 242 - 256. Biklen, D. (1992). Typing to talk: Facilitated communication.American Journal of Speech-Language Pathology, 1(2), 15-17. Biklen, D. (1992). Facilitated communication: Biklen responds.American Journal of Speech-Language Pathology, 1(2), 21-22. Biklen, D., Morton, M., Gold, D., Berrigan, C., & Swaminathan, S.(1992). Facilitated Communication: Implications for individuals with autism, Topics in Language Disorders, 12(4), 1-28. Biklen, D., Morton, M. Saha, S., Duncan, J., Hardodottir, M.,Karna, E., O'Connor, S., & Rao, S. (1991). I AMN NOT A UTISTIC OH THJE TYP (I am not autistic on the typewriter), Disability, Handicap & Society, 6(3), 161-180. Biklen, D., & Schubert, A. (1991). New Words: Thecommunication of students with autism, Remedial and Special Education, 12(6), 46-57. Calculator, S.N. (1992). Perhaps the emperor has clothes afterall: A response to Biklen. American Journal of Speech- Langauge Pathology, 1(2), 18 - 20. Calculator, S.N. (1992). Facilitated communication: Calculatorresponds. American Journal of Speech-Language Pathology, 1(2). 23 - 24. Crossley, R. (1988). Unexpected communication attainments bypersons diagnosed as autistic and intellectually impaired. Paper delivered at the Biennial ISAAC Conference, Anaheim, California, 1988. Crossley, R. (1990). Silent witnesses: The court system andpeople who use non-speech communication, Talking Politics, 1(3), 6. Crossley, R. (1991). Facilitated Communication Training,Communicating Together, 9(2), 20. Crossley, R. (1992). Getting the words out: Case studies infacilitated communication, Topics in Language Disorders, 12(4), 46- 59. Crossley, R. (1992). Lending a hand: A personal account of thedevelopment of facilitated communication training. American Journal of Speech-Language Pathology, 1(3), 15 - 18. Crossley, R., & Bourke, A. (1992). Facilitated CommunicationTraining. Melb0ourne: DEAL Communication Centre. Crossley, R., & McDonald, A. (1984). Annie's Coming Out. NewYork: Viking/Penguin. Crossley, R., & Remington-Gurney, J. (1992). Getting the wordsout: Facilitated communication training, Topics in Language Disorders, 12(4),29-45. Cummins, R. A., & Prior, M. P. (1992). Autism and assistedcommunication: A response to Biklen, Harvard Education Review, 62(2), 228-241. Donellan, A., Sabin, L. & Majure, L. (1992). Facilitatedcommunication: Beyond the quandary to the questions, Topics in Language Disorders, 12(4), 69-82. Eastham, D. (1985). Understand. Ottawa: Oliver-Pate. Eastham, M. (1992). Silent Words: A Biography. Ottawa: Oliver-Pate. Harrington, K. (1988). A letter from Annie, CommunicatingTogether, 6(4), 5. Johnson, I. (1989). "Hellish difficult to live in this world":The unexpected emergence of written communication in a group of severely mentally handicapped individuals. Journal of Social Work Practice, 4(1), 13 - 30. L vs. Public Schools, No 91-09, Final Order, (TennesseeDepartment of Education due Process Hearing, June 28, 1991). McLean, J. (1992). Facilitated communication: Some thoughts onBiklen's and Calculator's interaction. American Journal of Speech- Language Pathology, 1(2), 25 - 27. Nolan, C. (1987). Under the eye of the clock. New York: St Martin's Press. Oppenheim, R. F., (1977). Effective teaching methods forautistic children. Springfield, IL: Charles Thomas. Remington-Gurney, J. (1991). Facilitated Communication inMainstream Schools, Australian Communication Quarterly, 6(14). Schawlow, A.T. & Schawlow, A.L. (1985). The endless search forhelp. In M.R. Brady and P. Gunther (Eds.). Integrating moderately and severely handicapped learners: Strategies that work. Springfield, IL: Charles Thomas Publishing. Silliman, E. Three perspectives of facilitated communication:Unexpected literacy, Clever Hans, or enigma? Topics in Language Disorders, 12(4), 60-68. Apraxia Batt, M., Crossley, R., Remington-Gurney, J. (1987). Apraxia:An Unrecognized Cause of Severe Communication Impairment, Australian Communication Quarterly, 2(15). Hall, P.K. (1992). At the center of controversy: Developmental apraxia. American Journal of Speech-Language Pathology,1(3), 23 - 25. Robin, D.A. (1992). Developmental apraxia of speech: Just anothermotor problem. Americal Journal of Speech-Language Pathology. 1(3), 19 - 22. Literacy Koppenhaver, D.A., Coleman, P.P., Kalman, S.L. and Yoder, D.E.(1991). The implications off emergent literacy research for children with developmental disabilities. American Journal of Speech-Language Pathology, 1(1), 38 - 44. Research methodology Bogdan, R. & Biklen, S. (1982). Qualitative research foreducation: An introduction to theory and methods. Boston: Allyn & Bacon. Goal of clarification This process helps the person typing take responsibility for clarity. It aids us in limiting guessing and interpretation. Some people may be unable to "stick with it" for a long time. You may need to guess (multiple choice and yes/no questions) earlier or drop it and return to it as appropriate. When someone is making a statement of serious consequence it is important to stick with open ended questions and *not* to make suggestions through multiple choice or yes/no questions. Examples of typical facilitator queries leading to clarification MOST OPEN I'm not sure what ______ means. Can you try again? I'm still not sure about _____. Let's write the rest of the sentence and maybe that'll help. Do you know another word to use? Is this a word that I should know? Multiple choice: I'm wondering if you mean _____ or _____? Yes/No questions: Do you mean _____? LEAST OPEN Stephen Drake Phone:(315)443-3702 Facilitated Communication Institute Syracuse University Bitnet:sndrake@sued.bitnet 364 Huntington Hall Syracuse, NY 13244 Internet:sndrake@sued.syr.edu