Introduction to Supported Communication Pascal Cheng Harvey Lavoy Tracy Thresher 2014 Midwest Summer Institute: Inclusion & Communication for All June 23-24, 2014 Elements of Support for Communication Adapted from Cardinal 2006 Visual attention (look at keyboard) Emotional Support Attitudinal and behavioral supports Physical Support Communication support Positioning Technology and Equipment Partner skill and training Structured Activities Pointing skills of FC user Topics Overview of Augmentative / alternative communication Definition and candidacy for FC Understanding movement and FC Overview of the FC training process Basic elements of the technique Simulated practice of facilitation technique Getting started activities for new facilitators Documentation of FC user skills incl. authorship What is facilitated communication? Strongest therapy for people with no means of expression is sensational, controversial, revolutionary, technically subtle FC. It involves understanding movement lapses of people and providing physical support to help overcome them. Plastic nature of users of FC requires topnotch weaning of support towards ultimate goal of independence. Larry Bissonnette What is facilitated communication/supported typing? Facilitated communication or supported typing is one of an array of augmentative and alternative methods of expression for people who cannot speak, or whose speech is highly limited (e.g. echoed, limited to one or a few word utterances), and who cannot point independently or reliably. Facilitated Communication (FC) or Supported Typing is a form of alternative and augmentative communication (AAC) in which people with disabilities and communication impairments express themselves by pointing (e.g. at pictures, letters, or objects) and, more commonly, by typing (e.g. in a keyboard). Institute on Communication and Inclusion Structured facilitator training process Background info on FC Simulated practice activities Modeling by experienced facilitator Initial practice with supervision from experienced facilitator Regular practice with FC user and ongoing supervision from experienced facilitator Communication partner activity 1. Participants will break up into pairs. One will play the role of the communicator. The other will be the listener with normal speech. The communicator will attempt to communicate a message. DO NOT SHARE WITH LISTENER 2. The message can be: - A comment about the day - A question to the listener - Some news about something they have done recently Activity directions: 2. The AAC user must attempt to communicate the message without: -speaking -writing -signing -drawing The communication partner will attempt to determine what the message is. Activity Directions: 3. After completion of the activity, the pairs will share their experiences with the larger group: (Communicator) What was it like trying to rely on limited means to communicate your message? (Partner) How easy/difficult was it to understand the person’s message? “The most important principles for supporting people to communicate have little to do with equipment or elaborate instructional techniques. They are the attitudes and skills of the people they are talking with: their communication partners… “…The more supportive a communication partner is of a person’s efforts to communicate, the more effective that person will be.” Pat Mirenda Guiding principles for supporting communication Access to all forms of AAC including FC is a basic civil right. Presumption of competence is the starting point for supporting people who have difficulty with communication. The Right to Communicate The right to communicate is both a basic human right and the means by which all other rights are realized. All people communicate. In the name of fully realizing the guarantee of individual rights, we must ensure: that all people have a means of communication which allows their fullest participation in the wider world; that people can communicate using their chosen method; and that their communication is heeded by others. TASH Resolution on the Right to Communicate, 2000 Presumption of Competence Assume that a child has intellectual ability, provide opportunities to be exposed to learning, assume the child wants to learn and assert him or herself in the world... Presuming competence is nothing less than a Hippocratic oath for educators. It is a framework that says, approach each child as wanting to be fully included, wanting acceptance and appreciation, wanting to learn, wanting to be heard, wanting to contribute. Douglas Biklen, 2012 Larry Bissonnette “Fastening labels on people is like leasing cars with the destinations determined beforehand.” Anne McDonald, Annie’s Coming Out, 1980 “Unless someone makes a jump by going outside the handicapped person’s previous stage of communication, there is no way the speechless person can do so. Failure is no crime. Failure to give someone the benefit of the doubt is.” Christy Brown – “My Left Foot” “This is Christy Brown, my son. Genius. “ Christy’s father. Understanding Augmentative/alternative communication and FC What is AAC? Augmentative and Alternative Communication (AAC) refers to all forms of communication that enhance or supplement speech and writing. In simpler terms: Vt. AAC Resource Guide •Augmentative Communication supplements or adds to verbal and nonverbal communication. •Alternative Communication is for people with no verbal and minimal nonverbal output. Examples of AAC Gestures Body actions Head shaking Facial expressions Signing Use of communication board Use of electronic device Eye gaze Many ways to communicate Total Communication Approach: A full system of strategies which might include sign language, simple gestures and facial expressions, single words and phrases, and use of electronic devices. Specialized forms of AAC Sign language Selecting through touching, pointing, etc. pictures, symbols, words and letters to communicate a message Specialized communication aids What is the best physical access strategy ? Using an eye gaze board Pointing skills are often required to use communication aids and devices. What is Facilitated Communication/Supported Typing? Facilitated Communication/supported typing is a form of augmentative alternative communication (AAC) in which people are provided with physical support to help them develop effective pointing skills for communication using pictures, symbols, letters and words. The level of complexity of pointing skill needed depends on what is being communicated and what communication aid/device is being used. Choosing what methods or modes of communication to use Using multiple modes: • I might greet someone with a hand wave • I might show them some pictures of my vacation to share information • I might point to a picture or word for a snack I want • I might make a comment or share an opinion by spelling a message out Larry – Speech and Typing “Personally, my speech relays to others what my stomach needs while my typing promotes what my brain visualizes as intelligent thought.” Within any activity, people will be communicating for different purposes: Expression of needs/wants Sharing information Social Closeness relationships Social Etiquette social routines What kind of communication happens at a restaurant? Who can benefit from the use of FC/supported typing? 40 FC is helpful for those who cannot speak or whose speech is highly limited (e.g. echoed from others or limited to one or a few word utterances) and for who people who cannot point independently or reliably. Assessment The assessment process for FC involves determining if there are specific physical/movement problems affecting a person’s ability to point independently or reliably and if so, what physical support strategies can help the person to overcome those problems and improve their pointing skills. Examples of movement difficulties Difficulty isolating an index finger Pointing without looking Pointing too quickly Difficulty with extending arm/hand Initiating movement to point Difficulty with new motor tasks, i.e. typing novel communication Hitting the same selection or series of selections, e.g. automatic words and phrases, repetitively Q W E R T Y U I O P delete ASDFGHJKL ZXCVBNM , . space Observe the person doing a variety of activities involving pointing. Look for physical problems that might be affecting pointing. Point to the picture of “pizza”. Can you point to the word, “milk” Milk Juice Tea Soda Which drink comes from a cow? Let’s try typing the name of the town you live in… Determine physical support strategies that will help to remedy the problems and improve the person’s pointing skills The person may not be able to isolate an index finger and may need physical support initially to develop this skill. The person may also be unable to pull the hand back after making a forward movement and/or sequence forward and back movements unless the pointing hand or limb is steadied and supported….but not directed. “The facilitator must slow me down and pull my arm back to help me start again so that I can point to the correct letter I am going for. I would not be able to type the words I really want without the firm resistance of the facilitator.” Independent typing is not always reliable: LARRYFEELBETTERHAPPY GOINGHOMEPINESTWINOOSKIVT SITDOWNCHAIRTVONSUPPER CORNSTACKPOTATOSION PLAINSPEESICETEESPIE BANANASMILKBEER PRINT In addition to physical support, the communication partner may provide emotional encouragement, and a variety of communication supports (e.g. verbal prompts and feedback) The goal of facilitated communication training is independent communication, i.e. pointing and typing. Photos – Institute on Communication and Inclusion Levels of support Independence The effect of movement difficulties on communication Writing Exercise Write while moving opposite foot in counterclockwise direction on floor Name and address Your favorite activity to do in the summer and why Copy this sentence exactly: I am tirred of beeing misunderstandoo. Sue Rubin “Movement issues for me are a connection difficulty. I hear you ask me to complete a task, but my legs stay put. Through the use of FC I have been better able to get my body to engage in a task. Typing requires thinking and focus. My body has been trained to focus on movement when asked to do something or asked to respond. “ “Movement is essential to communication. I am unable to speak because of apraxia, a movement disorder. I can type because the movement of one finger going up and down is much easier than speaking or sign language. Adding a series of movements as in sign language would be dreadfully frustrating for me. Even simple movements are trying at times.” “It is a grounding of both my physical issues with where my body is in space and telling my motoring to type to go slow. Pay attention to the output with trusted touch. I am less anxious. Therefore I can truly type my own thoughts. That is the basis of the physical support to create a functional typing rhythm.” Physical support can help with: Regulation Control Body awareness Organization Connection Focus Tracy Thresher: My impulse control problems, my way of going too hard at the letters and my problems with perseveration, are things I need help from my facilitators… Basics of support Physical support Communicative support Emotional support Physical Support Provides physical support in response to specific hand function/movement issues For example, slowing down a person who is pointing too fast or molding a person’s fingers back from their index finger For low muscle tone/strength, pulling a person’s hand back above their board or device so that that they can reach selections Physical Support Pulls hand back from the communication device to a neutral position, ie. not side to side Provides backwards resistance only, does not move co-actively with the person Physical Support Provides minimal level support Creates opportunities for pointing with less physical support NO GUIDING - waits for the person to initiate the movement Physical Support Positions the communication device at an accessible angle and height for the person Physical Support Regularly monitors whether the person is looking at the communication device Monitors pace and rhythm of person’s pointing movement and adjusts physical support to accommodate changes: Physical Support uses more backwards pressure to slow the person down if they begin pointing too rapidly pulls the person’s hand back and brings to a pause to interrupt the pattern of hitting the same selection over and over (perseveration) Communication Support Provides skill reminders to the person about their movement, e.g. “Slow down”, “Reach more for the letters” Provides prompts and cues to help a person get started, maintain their focus or continue an interaction, e.g. “What’s the next letter?”, “Keep going”, “Look at what you are doing” Communication Support Provides feedback on what pictures, words, letters a person has pointed to, e.g.”G-O-space-N-O-W, go now” Provides feedback on content of messages and asks clarifying questions, “So you want to go now?” “Yes”, “Tell me where you want to go” Emotional Support Conveys high expectations and belief in the person’s competence, “I know you can do this” Maintains a calm and respectful attitude Offers encouragement and positive feedback to build confidence What kind of training activities are used when getting started? Set Work Set work is any structured activity which where the responses are predictable and the information is shared between the facilitator and communicator. Set Work Builds confidence in both communicator and facilitator Allows facilitator to learn the movement patterns of the communicator Helps facilitator to “get a feel” for the right support technique Set Work Very structured activities will be used with new FC speakers and new facilitators. The speed at which one moves from predictable to open communication will vary across FC users and facilitators. Flexibility is critical. Guidelines for using set work Method of structuring activities from ones which require very predictable responses, e.g. spell the word, “cat” to ones where the responses are very open, e.g. “What would you like to talk about today?” The Language Ladder (adapted from Rosemary Crossley) Conversation Self Expression Open ended Questions Less Predictable Predictable work Set Work Set work does not mean doing the same activity over and over such as typing name and address Ideas for set work can be found in everyday activities, e.g. reading a story and answering comprehension questions, practicing spelling words, doing a crossword puzzle, making choices from a menu, etc. For school age individuals, the use of FC can be incorporated into many different academic activities Can you point to the word______” Acrobat Violinist Lawyer Accountant Which person performs in a circus? Fill in the blank/ predictable: A large astronomical body that revolves around the sun is called a _______ (planet). Fill in the blank/open: One of the planets in our solar system is ______. Multiple choice/ closed choices: “Do you want strawberry, chocolate or vanilla ice cream?” Multiple choice/limited range: “What is your favorite flavor of ice cream?” Open Questions/Shared Knowledge: “Tell me what is happening in the picture.” Participation in everyday conversation Documenting progress with communication skills 87 Authorship Who is the author of a message produced through facilitated communication? Message passing The FC user conveying information that is unknown to their facilitator Research Negative studies in the 1990’s all used message passing as the method to prove “authorship” Most FC users in these studies fail to pass messages successfully Double blind studies show facilitator influence “Conclusive evidence that FC is not a valid communication technique” Research – Studies that have demonstrated authorship Used diverse research methodologies Message passing Video eye tracking (2001) Linguistic analysis of FC user typing (20012009) Evidence of speech before and during typing (2001, 2009) Studies with successful message passing Weiss, Wagner, and Bowman (1996) Cardinal, et al. (1996) Sheehan and Matouzzi (1996) What we have learned about message passing: FC users can do message passing successfully under the right conditions Not presented as test of competence Practice over time with a task Occur in natural environments FC user choice in message passing tasks Feedback to FC user on performance FC user performance can be variable Facilitator skill is critical How can a person demonstrate authorship of their communication? Understanding Message Passing For many FC users it’s a “test” of their ability to communicate Singled out and put on the spot Through message-passing we connect with others, reliable people, truth tellers Learned over time with practice Requires specific skills Special Issues for FC Users Lack of experience Passive observers Familiar routines with little change Thrown into situations and expected to perform High risk stakes Systematic practice of message-passing skills What can facilitators do to support FC users to be in control of their communication Minimizing Negative Influence Provide backwards resistance only Pull back to a neutral position Provide the minimal amount of support necessary - work towards independence! Minimizing cuing and control of responses through FC Wait for the FC user to initiate movement Avoid trying to anticipate what words a FC speaker might use Always clarify responses that you are not sure about Minimizing cuing and control of responses through FC Encourage FC user to control the flow of conversation Develop awareness of how and when a FC user might be looking for cues Minimizing cuing and control of responses through FC Teach FC users protest strategies where they can inform their facilitators when they are being influenced or when they want to change their words Work with other facilitators to compare your technique Guiding principles for the use of FC Specific guidelines and standards are needed to support the use of FC. Evaluation of a person’s progress with FC can be done through observation and documentation. Documenting progress and success Evaluation of a person’s progress with FC can be done through observation and documentation of the content of their communication and their actual pointing and typing skills over time. This can be part of a communication portfolio. Pointing and related skills that can be improved through the use of FC Index finger isolation and extension Visual focus Accuracy of pointing Upright seating position Development of deliberate rhythm Maintaining slow, even movement Decreasing impulsive or automatic movement Initiating movement Organization of movements – arm/hand positioning Attention to task Portfolio Approach to Documentation for FC Structured way of collecting information over time on an individual’s progress with FC focusing specifically on authorship, and independence FC user is directly involved in the portfolio documentation process Portfolio Approach Is best done when there are adequate supports in place for FC for an individual, e.g. multiple, trained facilitators; regular opportunities to use FC Methods of collecting info can include the use of forms, logs, transcripts and videotapes What is documented? Instances where the person has done successful message passing, i.e., conveying information unknown to the facilitator Demonstrations of independent pointing and typing What is documented? Patterns of unique typographical errors and creative/phonetic spellings; unusual syntax and expressions Similarity of communication style across facilitators Correlation between speech and typing