Chapter Two of

Crossley, R., 1994, Facilitated Communication Training, Teachers College Press, New York, $15.95

is given below. The book's Contents and Introduction are also available on-line. We are very grateful to Teachers College Press for permission to republish this material on the Web. Ordering details are given at the end.

Chapter 2.

FACILITATED COMMUNICATION: HOW AND WHEN

Students whose speech is not adequate for their communication needs have to use other means of communicating and making choices. Equally, students whose fine motor skills are not adequate for acquisition of normal pen and pencil skills need a substitute, usually a keyboard or computer interface. Speech or fine motor skill impairments rapidly become severe educational handicaps if energetic measures are not taken to remedy them. Apart from their day to day effect on the student's classroom performance, these impairments make it extremely difficult to assess a student's actual abilities with any reliability.

Many students find themselves caught in a downwards spiral: assessed as significantly intellectually impaired as a result of their speech and motor impairments, they are placed in a school where their speech and motor impairments are seen as being the unavoidable corollary of their intellectual impairments. They are unlikely to receive an occupational therapy assessment, and speech therapy is likely to be at a premium. The combined effect of continued failure (after all, the student does not have the basic output skills necessary for success), low expectations and lack of therapy is likely to be deterioration or stagnation rather than the improvement in skills that is every teacher's aim. The student's behaviour is often as poor as their academic performance.

Since the opening of the DEAL Communication Centre in 1986 we have seen many students in this situation. Lyn is one of them. When she first attended DEAL she was 14, diagnosed as autistic, and assessed as having an I.Q. of 50 (how this had been assessed was far from clear, as Lyn had no speech and poor fine motor skills). Lyn's handwriting was at a prep grade level, her muscle tone was low and her eye-hand co-ordination very poor. She had been given training in manual signing and had acquired approximately 100 signs (more than many students, but still much less than the expressive vocabulary of a two-year-old signer). She used a typewriter with difficulty for simple copying tasks. She was thought to be reading at roughly a six-year-old level. When facilitated access to a mini-keyboard was provided to compensate for Lyn's fine motor problems it quickly became clear that her literacy skills had been significantly under-assessed. Lyn transferred from her special school to a high school at the start of 1988. She is now (1990) handling the regular year 11 syllabus successfully. She is able to type and use her communication aid independently, but has difficulty sustaining the speed and endurance necessary for her heavy academic load without facilitation. Equally, without the initial facilitation Lyn would presumably still be attending a special school, presumed to be intellectually impaired.

Because of Lyn's fine motor problems neither signing nor handwriting provided her with an effective alternative to her speech. Children who are not succeeding with signing or handwriting, both of which place high demands on fine motor skills, should be re-assessed with a view to finding another communication strategy with which they can be more successful. The obvious alternatives all involve making a choice by pointing, either to real objects or to pictures, symbols, words or letters. These may be used on communication displays, electronic communication aids or typewriters. Clearest, most effective, pointing is done using the index finger of the preferred hand.

Even though pointing is motorically far less demanding than signing or writing, many students still present with problems requiring remediation before accurate pointing is possible. A student's failure to point accurately is all too often seen as a reflection of intellectual impairment or ignorance, and because of this the student's perceptual-motor status is not assessed in detail. After seeing many students similar to Lyn — students who required further communication augmentation, who required intensive manual training to acquire the necessary physical skills, but who were of an age which meant that their educational programme had to continue while they had this training – we devised a communication aid access and training programme called facilitated communication training.

To facilitate is to make easier. In facilitated communication training the task of using a communication aid is made easier for a student with a severe communication impairment.

The degree of facilitation needed varies from person to person, ranging from an encouraging hand on the shoulder to boost confidence, to full support and shaping of a student's hand to enable isolation and extension of an index finger for pointing.

Facilitation differs from other hands-on training methods such as co-active movement and graduated guidance. In co-active movement the teacher puts their hands over the student’s hands and leads them through a movement pattern. You might, for example, put your hands over the student’s hands and help him to pull his trousers up, or scoop with a spoon. Co-active movements are performed by both student and teacher together and it does not matter if the teacher's movement is stronger than that of the student (at least not at the start of training). In co-active movement you lead the student through the movement; in facilitated communication you are setting up a situation that will allow the student’s own movement to be functional. It is vital that the choices made be those of the aid user. The direction of the movement is controlled by the person being facilitated, not by the facilitator. The aid user’s movements should be stronger than that of the facilitator, who gives the minimum assistance necessary.

Any student whose speech requires augmentation and whose hand skills are not adequate for them to achieve a level of expression matching their receptive and internal language is a candidate for facilitated communication. Beware of putting the cart before the horse here — as assessment of students with severe expressive problems is so difficult, no student should be excluded from the training programme on the basis of previous negative assessments. Often the training is a pre-requisite for accurate assessment. Always give the student the benefit of the doubt.

As facilitated communication requires both some hand skills and the potential for improvement in those skills it is not usually the method of choice for people with severe physical impairments, who are offered scanning or coded systems instead. Facilitated communication offers most to students who are ambulant, for whom an easily portable communication system that is accessed manually is necessary. To date successful users of facilitated communication include children diagnosed as intellectually impaired (including children with Down Syndrome), children diagnosed as autistic, and children with mild cerebral palsy. Regardless of diagnosis, all potential users present with impairments of motor skills which preclude use of handwriting or signing for more than the most basic communication, and which significantly impede their independent use of communication aids.

The immediate aim in using facilitated communication is to allow the aid user to make choices and to communicate in a way that has been impossible previously due to neuro-physical or emotional problems. Practice using a communication aid in a functional manner is encouraged, thus increasing the user's physical skills and self-confidence and reducing dependency. As the student's skills and confidence increase the amount of facilitation is reduced. The goal is for the student to be able to access the most appropriate communication aid(s) independently.

Common problems requiring facilitation

1. Poor eye-hand co-ordination:

The student makes selections impulsively, without looking, or without allowing enough time between movements to scan the display and locate the target.

It is vital to ensure that the student makes eye contact with the target before making a selection. Someone who points without looking is unlikely to hit the target, and someone who does not scan the available choices cannot make a meaningful choice. At first the facilitator may have to restrain the student from moving until he or she is looking at the target area. Where the student’s head is actually turning away from the target the facilitator may need to physically assist in the maintainance of a midline, eyes down, position. If these restrictions are enforced consistently eye/hand co-ordination usually improves quite rapidly.

2. Low muscle tone

The student's arm and hand are "floppy" or "heavy". There is difficulty raising the arm against gravity and muscles fatigue quickly.

The immediate remedy is to provide some kind of support. The form of support is adjusted to the aid user. Supports used include:

A. the facilitator places hand under aid user's forearm

B. the facilitator holds the user's sleeve or a wrist band

C. the user grasps one end of a rod and the facilitator holds the other end

D. the communication display is positioned so that the user can rest his or her forearm on the table or a typist's support — this is the optimum solution, but only suits users with no other accessing problems and only works while the user is sitting at an appropriate table.

If muscle tone is very low the student will do best when the aid is positioned as low as possible, minimizing the arm lifting required. Such students are often more independent in aid use when they are standing up.

Low muscle tone cannot be cured, although it can be increased for short periods. However, it does often go with reduced muscle strength – people with low muscle tone may not be asked to do much, and may not participate in sport – and we can do something about that. The long term strategy which assists people with low muscle tone increase independence combines practice in aid use with an exercise program for arms and shoulders.

3. High muscle tone:

The student's arm feels tense, and movements are often too forceful, either over-reaching the target or pushing the aid away.

Usually the harder the student tries to perform the more muscle tone increases. The arm may begin loose and gradually become rigid. This problem is often associated with impulsivity (see 10 below).

High muscle tone cannot be cured, but its effects can be alleviated. Remedies include:

A. shaking the student's arm until it feels floppy

B. pointing to a target close to the body between selections, so that the student's elbow is flexed between selections

C. regular pauses to give the muscles a chance to relax.

4. Index finger isolation and extension problems:

The student has difficulty in extending the first finger while holding back the other fingers. Users with this problem either point with all fingers extended or use the middle finger (which is the longest). Either method makes accurate selection difficult.

This is a very common problem. If you can’t isolate a finger you cannot point accurately to a small target, and this makes it difficult to use a keyboard or even to have many choices on your pictureboard. Remedies vary with the severity of the problem, and include.

A. an occasional reminder to keep the other fingers back

B. asking the aid user to hold a rod in the palm while pointing to encourage flexion of the unwanted fingers (sometimes this prompts a reflex grasp in which case the index finger will also flex and the aim will be defeated).

C. physical molding of the student's hand by the facilitator (usually only done for a short period at the start of a training programme). When holding the user’s hand the facilitator must take care to avoid all contact with the user’s index finger. Attempts to support the index finger with the facilitator’s hand are counter-productive and should be avoided.

D. physically restraining the un-needed fingers — a simple method is to use a snug fitting sock. Make a small hole in its toe for the index finger, pull the sock down firmly over the student's hand so that the other fingers are bent and hold it in place by a piece of ribbon or velcro fixed around the wrist. This is a short-term solution — if pointing does not improve within a month further therapy advice should be sought.

A curved or limp index finger may be too weak to push down a key, and may have to be splinted for a short time or a pointer may have to be substituted in the early stages of training.. Meanwhile exercises such as pushing into a ball of clay will be suggested to extend and strengthen the finger. It is generally quite easy to achieve independent finger extension; the use of splints slows this down, and they are very much a last resort. Hand molding, too, should be used for only a short period after the initial assessment.

5. Perseveration:

The student makes a selection and continues hitting either that selection or adjacent selections inappropriately.

This is a very common problem, though in people with communication impairments it has often gone undiagnosed. The immediate remedy is to break the pattern and pull the student's hand back to the edge of the table after each selection. Gradually this movement pattern becomes automatic and students withdraw their own hands after each selection. Sometimes providing an alternate target between the student and the aid can assist in the development of the desired movement pattern (e.g. student makes selection 1, hits red dot on table, makes selection 2, hits red dot, makes selection 3, etc.).

Perseveration affects the use of communication aids and creates difficulties with assessment. People who have no speech are often given tests involving pointing, and these will not provide a fair assessment for a person who has perseveration.

6. Using both hands for a task only requiring one:

The student points to two items simultaneously and it is hard to be sure which item (if either) was actually desired.

Every effort should be made to discover which is the student's preferred hand and all one-handed tasks should be performed with this hand. It may be necessary to restrain the other hand for some time or to devise other strategies to keep it out of the way e.g. student may put it in her pocket, use it to hold a clutch purse or even sit on it!

7. Tremor:

Tremor can either be a continuous tremor or an intention tremor, where the hand is stable while at rest but trembles when the person tries to do something (such as point).

Tremor is very difficult to remedy. In the short term, stabilizing the limb (either by the facilitator holding the student's wrist, or by the student holding one end of a rod held by the facilitator) will assist. A long term programme may involve the wearing of wrist weights while using the hands or the performance of exercises as suggested by an O.T. or physiotherapist. This does not work for everybody, however. Tremor is reduced by pointing against resistance, and is helped by a really firm backwards pressure on the wrist.

8. Radial/ulnar muscle instability:

The muscles of forearm, wrist and hand exert unequal pull on the hand or fingers. Sometimes the index finger swerves to one side as the student goes to point, leading to unwanted selections. The most common problem is for the aid user’s index finger to swing across in front of the other fingers. Often the hand also drops down from the wrist thus making the tip of the index finger invisible to its owner, who is then pointing blind.

Any remedy which restores the finger to view will help in the short term:

A. the user points as though pretending to shoot with the index finger

B. the user holds one end of a rod while the facilitator holds the other in such a way as to ensure that the user's hand does not drop or swing away from the target

C. the facilitator’s hand is used to correct the user's wrist and hand position

An exercise programme to strengthen the student's arm and hand muscles is usually necessary to achieve long-term improvement.

9. Initiation problems:

The student does not spontaneously reach out to the communication display.

Some people find it very difficult to initiate a movement. A tap on the shoulder may be necessary before they can get up from a chair. As one person spelled out, “I know what you want me to do, but I just can’t get it to happen.”

A verbal prompt may be all that is required to start communication, e.g. "Do you have something to say?" though in the earlier stages a physical prompt such as a touch on the elbow is often necessary. It is important that the communication display is always readily accessible, and that any spontaneous movement towards it is reinforced with a positive response.

10. Impulsivity:

The student moves too fast to produce considered responses — starts pointing at the answer before you’ve finished the question, or points quickly all over the board so that you don’t know which item was meant. .

This is frequently, but not necessarily, associated with poor eye/hand co-ordination and the remedy is similar. Slow the student down and refuse to allow any selections made without looking. Maintain a slight backwards pressure, so that the student is always having to push against your resistance to reach the communication display. (This is good practice with all facilitated students other than those with significantly lowered muscle tone, as the resistance has a stabilizing effect and reduces the chance of the communication partner unintentionally directing the user to a selection.). Pull the hand back after each selection.

11. Proximal Instability:

The student’s shoulder and trunk position is unstable. Often an overarm pointing action, rather than the more controlled underarm action, is used.

If you want accurate finger pointing you must have the shoulder, which is the origin of the arm movement, properly stabilized. People with muscle weakness often haven’t got sufficient stability at the shoulder to allow accurate hand movements. There are a number of exercises that can strengthen shoulder muscles. In the short term firm pressure on the shoulder or on the outside of the upper arm may assist. Seating which encourages a stable, upright posture is also important.

12. Reduced proprioception:

The student moves awkwardly, sometimes overshooting and sometimes overshooting the target.

Proprioception is the sense that lets us know where the parts of our bodies are in space. To make an accurate movement it is necessary to know where you are starting from and to get feedback from your body as the movement proceeds. Reduced proprioceptive feedback is hard to diagnose with certainty, especially in a person with severe communication impairments. Apparently purposeless movements such as rocking which increase proprioceptive feedback may indicate that an individual has reduced proprioception. Often diagnosis follows treatment — a client without any other obvious problems improved her pointing significantly when she wore wrist weights. In lieu of any other obvious explanation it is presumed that the weights gave her more feedback on the position of her hand and arm. Anything that highlights arm and shoulder position will help — weights, pressure, massage.

13. Lack of confidence:

While not itself a physical problem nervousness certainly affects physical performance. The most common symptom is reluctance to respond, often combined with lowered muscle tone and reduced eye contact. Encouragement and success are the most effective remedies.

Moving towards independence

The time needed to achieve independent use of a communication aid is influenced by how frequently the aid is used, the severity of the problems the student started with, the self-confidence of the student, and the availability of skilled, sympathetic, communication partners. As in learning any physical skill, regular practice is vital. (It is probably not coincidental that the students who have moved most rapidly towards independence are those who have transferred into mainstream schools where they have had integration aides available to act as facilitators and pressure to match the quantity of work produced by the other students.)

As soon as a student starts to overcome one problems the assistance given with that problem is reduced; for example,. a child with very low muscle tone may start communicating with a facilitator giving support under the wrist. As the child’s muscles strengthen with practice the facilitator withdraws support to the forearm. The next step may be to hold the child's elbow, or to lightly hold their sleeve. Whatever the individual variation the aim is always to withdraw support gradually so that the student continues communicating successfully and does not lose confidence.

Students often feel the need for physical contact beyond the time when this is strictly necessary to remedy physical problems. It is important that this need for emotional support is accepted. If it is not, the student may withdraw and stop communicating and the gains made will be lost. A hand on the shoulder usually suffices till this too is faded and the student makes selections without any physical contact from a facilitator. Of course, verbal encouragement is important throughout the whole training procedure and may be necessary even when physical contact is no longer required.

It is important to understand that an aid user's need for facilitation will vary. When tired or unwell many aid users have reduced physical control and may need more support than usual. Equally, an aid user's skills will be affected by nervousness, so a student who does not require any physical contact when communicating in a small group may need a hand on the shoulder when communicating in public. Often aid users who are starting to communicate with new partners initially appear to regress, seeking a degree of support that may have been discontinued months ago with other partners. This must be accepted if the interaction is to succeed. Support can be faded rapidly once confidence is established. Some aid users who can type independently but slowly find that they can type much more quickly with physical contact. This is a problem in the secondary classroom where both speed and independence are highly desirable and each situation needs to be resolved individually. In the long term speed will improve with practice.

Literacy

Facilitation in itself is not directly connected with typing or literacy. It is a means of training manual selection skills that can be used in any situation in which choice-making is needed — selecting a chocolate from a box, choosing an item from a menu, making choices in a supermarket, pointing to body parts on a doll, matching pictures etc.,etc. All of these activities require similar eye/hand skills. Nonetheless, many of the users of facilitated communication are using keyboards and this has been an exciting outcome of this programme.

Most students who have attended DEAL have had considerable exposure to written language if not to formal literacy training, however, like Lyn, expressive impairments have prevented any literacy skills they have acquired from being recognised. Sixteen-year-old Joe used a typewriter with facilitation to show that he could read and spell. His mother said "Now I know why he takes his father's paper every night!" Many teachers and parents report that students were showing an interest in written material — notices, books, papers, magazines, TV commercials — that they found inexplicable until the students found a means of expression, via facilitated communication training, which enabled them to reveal that they had acquired reading skills. For this reason it is important that students be given open-ended assessments when they enter a communication program and not be pre-judged on the basis of previous performance or labels.

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