Contact Candle, literacy,curriculum differentiation, disability, autism, CP

At CandLE we are moving towards an approach rooted in FC/FCT called Motor Planning Training (MPT). However, we are able to support people who use FC and FCT and have been active in promoting good practice and developing practice standards within FCT.

This guide has been written to provide a rationalle for FCT. We do not claim that this is the only way to practice FCT. We do however find that this approach works very well within the UK system and is received positively by statutory authorities and professionals who have historically been wary of FCT.

By locating FCT firmly within the sphere of Alterntative and Augmentative Communication (AAC) generally and by acknowledging that it is only one of a range of AAC options we pave the way for positive working relationships with others who might provide support to non speakers in different ways.

The Royal College of Speech & Language Therapists' guidelines propose that Total Communication and/or Inclusive Communication “describe an approach that seeks to create a supportive and effective communication environment, using every available means of communication to understand and be understood”. Facilitated Communication Training should be seen as one of many strategies which might be employed to support a person who needs help in order to communicate and should not be learnt or used in isolation from other, appropriate approaches. Other approaches might include: Manual signing, Picture Exchange Communication System, Objects of Reference or supported speech such as cued articulation and ®PROMPT therapy. The goal should be to enable the user to gain the maximum communication options with the maximum independence possible.

Historically, FCT has not enjoyed total support from various professional bodies. The main reason put forward is that facilitators guide the movements of the user so that the communications are the facilitators and not the users. There has been a great deal of research into the use of FCT and the outcomes of studies have been very mixed. However, there are numerous examples of cases where users of facilitation have passed messages using facilitation where the facilitator could not have known the content beforehand. Even more compelling is the growing number of people who can now communicate by independent means who needed to be facilitated to achieve independence.

At CandLE and at University of Bolton we view facilitation as a physical training programme that aims to enable a person to achieve greater independence over time. We believe that facilitator influence does happen occasionally but that this does not detract from the usefulness of the technique in helping someone to improve their physical skills so that they can develop their communication and learning skills effectively.

Attitudes towards FCT are changing and we look forward to the day when all proponents of a total communication environment will count FCT amongst the many strategies that might be helpful.

Over ten years ago, the Means, Reasons and Opportunities model of communication was developed and used for teaching a group of staff working with people with learning disabilities in Leicestershire by the first author.

Subsequently it was used in Nottinghamshire as an integral part of the Talkabout Teaching Package (Money & Thurman, 1994; 1996). The original model (figure 1) has since been developed and expanded to be used by numerous therapists, teachers, nurses, lecturers and other professionals, across a variety of specialism, and throughout the UK.

We have noticed that means, reasons and opportunities for communication increase when FCT is introduced for those whose motor planning problems have previously precluded reliable use of communication aids. There is ongoing research in this regard and we await the outcome. Initial findings should be available through NottinghamTrentUniversity in the next couple of years.

AAC is the wider field of communication strategies for those who have difficulty with speech to the extent that they are not able to say all that they want to or whose writing skills are not developed enough for them to record all that they want to.

Augmentative is in additional to speech or writing. Alternative is instead of speech or writing. FCT is just one of many strategies and is appropriate as a teaching strategy for those who cannot independently access AAC, with a goal that they may be able to with practice over time. Facilitators should be familiar with a range of AAC opportunities so that they know when and how to apply approaches which promote maximum independence.

FCT provides physical and emotional support to those who need to access communication aids but do not have the motor skills to successfully do so independently. The aim of FCT is to support the communication aid user in developing their motor skills gradually over time so that they can eventually learn to independently access an aid. Not everyone is able to achieve this but they should not be excluded from FCT on this account nor should efforts to help them achieve the goal of independence be abandoned. In some situations the FCT user will be able to independently access some aids (such as well spaced multiple choice lay out) whilst needing physical support for more complex or detailed access( such as typing on a keyboard). This enables the FCT user is able to independently verify that what has been typed was not influenced by the facilitator.

Not everyone using FCT will have the literacy skills to type. The method is still useful to help people to improve their accuracy to point to symbols, pictures or objects. Most FCT users will be supported to improve hand function for pointing with an index finger or fist but some FCT users, who are unable to use their hands, may be facilitated in other areas such as the back of the head whilst using a head pointer.

There is a structured programme involving the fading back of physical support and the increase of complexity of material over time. Throughout the facilitation process it is essential that the facilitator makes every effort to avoid influencing the FCT user’s movements. It is accepted that facilitator influence does happen sometimes but this does not detract from the fact that the FCT user has something they wish to communicate or that influenced typing may still have elements of communication that originated with the FCT user. It is often a matter of getting to know the FCT user well so that the facilitator can fade back support as much as possible making independent choice more certain. It helps to keep a record of facilitated communications where the facilitator could not have known what has been communicated beforehand. The facilitation users consent should be obtained for this.

Whether or not an FCT user can be influenced will depend on a number of factors such as:
• How suggestible the FCT user is.
• The experience of facilitator and FCT user.
• How far the facilitator has been able to fade support.

There are times where facilitator influence is an essential part of the process. For example, if the FCT user is learning to spell as they are developing their facilitation skills co-active (i.e. influenced typing) fades gradually to facilitated (uninfluenced typing) and eventually, hopefully to independent typing.

A central factor of facilitation is that the FCT user is enabled to access the aid more successfully than they would be able to without facilitation. This can be achieved in a number of different ways depending on the movement issues that affect the FCT user. For example, it might be necessary to hold back the FCT user’s hand until they have looked properly at the options, backward pressure or resistance is often needed to slow the FCT user down and help them to develop even, rhythmic movement. The ultimate aim is to give the FCT user more physical control that they have formerly been able to achieve.

There are basically three main phases in the programme but it is essential to remember that participants will move back and forth between stages. It is not a linear path. Times when you will need to move back will include:

The ladder is a tool to enable facilitators to develop their skills and learn about the needs of the user that they support. The main idea is that when you begin the facilitation relationship the facilitator should support the user only to type or select items that are totally predictable. In this initial phase of a programme belief and preconceived ideas about the user’s understanding and ability are suspended while the facilitator learns what physical accommodations they need to make to be enabling to the user.

• Whether the literacy skills of the user are known or not.
• Whether the facilitator has facilitated other people in the past.
• The professional background of the facilitator. For example, teachers may have a slightly different agenda to Speech and Language Therapists and would therefore approach the communication task slightly differently although still in a complementary way. Parents and peers will be looking for different responses – both are valid.
• How comfortable the user feels with the task.
• How experienced the user is.

The ladder consists of a set of activities that facilitator and user can do together ranging from very straightforward ones where everyone knows what the user should be pointing to, through activities where there are a limited range of possibilities to finally, free ranging conversation.

Where a user has not been facilitated before, as the relationship develops and progress is made up the ladder the users literacy abilities may become clearer. However, new facilitators should not contradict established ability in users that have been facilitated for some time. If the facilitation is not competent the user may not be able to demonstrate their skills and knowledge.

If in doubt about a users understanding it is better to err on the side of the “Least Dangerous Assumption”. This is a presumption of competence on the part of the facilitation user. Over time and as relationships develop a fair picture of everyone’s abilities should emerge. This will be the most reliable where people have managed to develop a relaxed attitude and focussed on the important issues such as positive responses, comfortable relationships and a commitment to equality.

If you are beginning a Facilitated Communication Training programme, you are developing a relationship. For the programme to be successful mutual trust and respect will be essential between facilitator and facilitation user.

Facilitators coming to the relationship having previously thought that people who do not speak are likely to have learning difficulties need to suspend that belief and be willing to take the view that we do not know what a person who cannot speak actually understands. If a person cannot tell us how can we know? This is especially true for people who also have motor difficulties so that they can’t use the alternative of pointing to answers accurately.

Language is the code we use to communicate. Expressive language is the expression of our thoughts, usually through speech. Receptive language is our understanding of the expressive language of others. Historically the amount of language that a person can spontaneously express has been thought to indicate their expressive language or understanding of language. We now know that language is not so simple.

Literacy is the acquisition of knowledge of the graphic form of verbal communication, reading, spelling and writing. For people who have no speech the acquisition and use of literacy can provide a vital link to communication. If you can spell you can point to letters to spell out a message. If you can’t spell you have to rely on the options that other people give you (such as a group of pictures to choose from).

When someone is learning to communicate it is vitally important that those helping them are clear of the goals. Are we trying to teach someone to spell then read and then demonstrate factual knowledge or are we trying to give them tools with which to express their feelings and thoughts? Both of these goals are useful and liberating for the person who is developing their skills but it is easy for those who wish to help to mix the two up.

Language is an altogether different ball game. Literacy may be involved but language is about having a shared code with others so that we can communicate thoughts and feelings and enter into and sustain relationships.

The speaking population takes all of this for granted and has no need to analyse the ways in which they verbally or otherwise communicate. For those of us who help non-speaking people, and indeed for the non speaker themselves, the distinction becomes important.

The ladder as presented in this document attempts to distinguish between language tasks and literacy tasks. These tasks are interrelated and should be mutually supportive. In addition to the ladder it is essential that we consider the motor skills we hope to support and foster.

Those of us who are helping non speakers need to ask ourselves a series of questions in order to be sure that we are giving the most opportunity possible for the non speaker to communicate their thoughts and wishes as follows:

Are we able to suspend our own thoughts and feelings so thatØ we can support the non speaker in expressing their own?
Do we have the right materials to enable them to meaningfully communicate?
Are we bound by a set of rules and guidelines or can we take an open approach to a person’s effort to communicate?
Do we have preconceived ideas about what a non speaker can or cannot achieve?
Are we willing to go beyond our current understanding in order for the non speaker to be able to express themselves?

The only way that a non speaker can be given control of their lives is if the professionals who are paid to support them relinquish control, method and system and start to form relationships with the non speakers, their families, their friends and anyone else who may be able to help them to develop to their full potential.

The psychologist Vygotsky is credited with developing the concept of mediation in learning in the first half of the 20th century. Many educators have built on his work. The underlying principle is that the most important measure of a persons ability is that of their potential and what they can achieve when we give appropriate help rather than of what they can do in isolation. When we work in this way we look at how people we are helping respond to our input and devise learning and support programmes that will build on it. There are many educational programmes that promote the development of thinking skills that are built on these foundations. FCT has a place in this sphere. Users of FCT who are now independent communicators have reported that their understanding of the world around them increased once they had access to facilitation.

As well as being a technique to improve access FCT is an approach to learning, putting a new perspective on how tasks are presented to students and examining our attitudes as educators in terms of expectation of student output and ability.

This is the development stage. The facilitator is learning the appropriate ways to support the FCT user so that they can be successful communicators. The human rights, dignity and opportunity of the FCT user are paramount. At the beginning the facilitator should only ask the FCT user to spell things out where the answer is either known or has very few possible answers. If the FCT user is unable to spell they should be facilitated to respond to a limited number of choices in symbol, picture or object form. In this early stage the facilitator needs to learn to provide appropriate physical support so that they can build up an understanding of the FCT user’s motor pattern. Initially this may involve ensuring that the correct selection is made.

During this phase it is hoped that the FCT user will reach a stage when they are able to initiate some communication and type or select from symbols or pictures/objects freely in a conversational style some of the time. It is also hoped that the facilitator will reach a stage where they can facilitate the FCT user in making general conversation and, hopefully, have some anecdotal evidence that the communication is from the FCT user and not the facilitator. A careful record of such communication should be kept.

This stage can be expected to last for anything between 3 months and 2 or more years depending on the circumstance of the FCT user and facilitator. Ladder activities at levels 1 – 11 are the most appropriate to this phase.

Once facilitator and FCT user are typing fluently and confidently using phrases that the facilitator had no prior knowledge of, some of which will have been anecdotally validated, the process of fading back through several stages can begin. Ladder activities at levels 12-16 are appropriate to this phase.

The facilitator and FCT user need to negotiate this phase. The facilitator moves slowly back from the position that they are facilitating in. Initially the facilitator will need to move back and forth and provide more support at regular intervals while the withdrawal of that support is slowly taking place. Each stage can take anything from 2 months to a year. Overall this phase can take anything from one to six years or more from the beginning of the FCT programme.

1. Remove support gradually by moving back from hand moulding to wrist. Within this stage index finger isolation exercises might be necessary.
2. Wrist to forearm. Within this stage upper girdle exercises might be necessary.
3. Forearm to elbow,
4. Elbow to upper arm or upper arm to shoulder as appropriate.
5. Independent but with a facilitator close by.
6. Independent.

Some FCT users who are facilitated with the use of head or light pointers will need a different model of fading back. For example:
1. From firm hold at the head to loosened grip.
2. From loosened grip to intermittent grip. An alternative might involve holding a ribbon that is tied to the head pointer.
3. From intermittent grip to hand on back or shoulder.
4. Some form of independent access.

In this stage the emphasis is on independence. It is paramount that the FCT user’s right to communicate is kept at the forefront. Even if they have not been able to prove that they are typing without being influenced they still have a right to be facilitated. Some FCT users will never achieve independence and it will be useful to have some record of typing or selection that is certain to be the FCT user’s own communication.

1. Typing similarly across several facilitators.
2. Demonstrate independent thought by validating what is typed in other ways.
3. Typing independently or semi independently some or all of the time.
4. Use non-verbal responses consistently.
5. Point to one of a range of multiple choice options independently.

Someone who is dependent on the use of FCT for communication should have access to a communication partner at all times where possible. There are those that would argue that this is creating a dependency relationship. Proponents of FCT would argue that to remove the facilitator takes away the FCT user’s ability to communicate and defeats the whole purpose of the social interaction situation. It is not appropriate to expect the FCT user to use a method of communication that would generate the impression that they are less cognitively able than is shown when they are facilitated. This would be likely to confuse peers and frustrate the FCT user.

The most desirable situation is for as many people as possible in the FCT user’s environment to learn how to facilitate. This can be an extremely enjoyable experience for all concerned and can, in itself, widen the social group around the FCT user. In school the ideal situation is for peers of the same age to learn to facilitate as well as teachers and support assistants. There should be someone in each of the environments that a pupil is likely to find themselves in who can facilitate that pupil. Facilitators should not be chosen only from the group that is closest to the pupil. Teachers and assistants who do not regularly have contact with the pupils can benefit from the training as they will be equipped to support other pupils who may emerge needing FCT as well as the identified pupil.

It is helpful if the pupil has more than one strategy for communication available to them. For a student who is able to type a set of multiple choice boards or a voice output multiple choice system should be available for quick and easy communication, especially where the facilitator lacks experience. This is especially important for users of FCT who are able to choose out of a range of options independently.

“Contested Words, Contested Science: Unraveling the Facilitated Communication Controversy” Douglas Biklen (Editor), Donald N. Cardinal (Editor) Paperback 245 pages (June 1997) • Publisher: Teachers College Press; ISBN: 0807736015 •

1. The development of these practice standards has come about as a result of discussions with various agencies and individuals involved in the development of Facilitated Communication Training (FCT) in the UK and a general consensus that there is a need for some common agreement in regard to the way in which FCT is practiced. This guide is being developed in collaboration with Rosemary Crossley of the DEAL Communication Centre, Melbourne, Australia, where FCT originated. These practice guidelines may also be useful to those who use FC (Facilitated Communication), a similar technique which originated in the USA.

3. AAC encompasses the provision of support for anyone who needs additional resources in respect of their expressive language. Many people whose speech is not clear or fluent, or who do not speak, need to augment their speech by using communication aids, or use an alternative method of communication. There is a wide range of communication aids, including cards with pictures of wanted items, letter-boards, mini typewriters which talk, and sophisticated portable computers which speak and allow internet access and environmental control. Regardless of the nature of their aid, in order to communicate the user has to select the symbol(s) they require. Most communication aid users point with their fingers but some use their whole hand, fist, chin, head, feet or eyes.

4. Even though pointing is physically far less demanding than sign language or handwriting, many potential communication aid users still require active intervention before they can point accurately to sequences of items on communication boards or keyboards. The terms FCT and FC both refer to an augmentative communication strategy in which individuals with limited speech receive physical and/or emotional support from trained facilitators to enhance their skills in using communication aids.

In FCT a communication partner (facilitator) helps the communication aid user overcome difficulties with accurate movement so that they can improve their control of their movements. The facilitator provides physical support in a way that will help the user to be more accurate in their pointing. This might involve supporting them under the arm or wrist to counteract muscle weakness, providing resistance to the movement to counteract impulsivity and allow the person time and control to reach their chosen target, steadying the head of someone who uses a head pointer to select items or providing other appropriate physical support.

The immediate aim of facilitation is to allow the aid user to make choices and to communicate in a way that was not previously possible. Practice using a communication aid is encouraged to help the user to increase physical skills and self-confidence. As the student's skills and confidence increase the amount of facilitation is reduced. The ultimate aim is for the students to be able to use the communication aid(s) of their choice independently. It is acknowledged that not all students will reach the goal of independence but work towards it will continue both by practicing with FCT and by varying the technology used.

Many students previously diagnosed as having significant learning impairments have benefited from facilitation to the extent that they have been able to develop the skills needed to follow the mainstream curriculum. Others have been able to increase the range of options that they can make choices from by improving pointing skills. All users of facilitation are given every possible opportunity to develop literacy skills; however literacy is not a requirement for involvement in a FCT program.

5. Facilitation looks deceptively easy - it appears as if you just provide physical touch to help someone point. However, first the person needs to have their current communication, fine motor skills and literacy assessed by a professional who is knowledgeable about AAC and skilled in FCT so that an individualised programme can be devised utilising a range of communication techniques in which facilitation is only used when essential.

The different levels require different sets of skills and knowledge. Where only a higher-level facilitator would be expected to understand and practice one of these standards this is indicated in brackets.

Attends advanced assessment workshop and/or undertakes a short course in AAC if no previous background in the field. (Alternatively, completes the first module on facilitating communication at the University of Bolton.)

7. Facilitators - family members, teaching assistants etc. - need to be taught to provide appropriate support. It is important to check on the reliability of the communication with each facilitator and to develop independent YES/NO responses that the person can use without facilitation if at all possible. When moving towards free expressive writing it is a good idea to ask the user to confirm that they intended what they just typed using YES and NO.

8. Working towards independent communication is crucial to FCT as is the development of structured programmes to meet this goal. There are some who will not be able to achieve full independence but every effort is made towards this goal. Success rates may well vary in different circumstances. For example an FCT user might be more independent in the home than in school or vice versa.

9. Anyone involved in FCT recognises that communication is a human right and that every non-speaking person should to be helped to achieve communication via facilitation or any other reasonable means.

10. Facilitators should have an understanding of the neuro-motor problems that they aim to address with an FCT programme. These problems may include some or all of the following: variations in muscle

tone, impulsivity, perseveration, reduced proprioceptive awareness, sensory problems including light and/or sound sensitivity, impaired hand/eye co-ordination, distractibility, dyspraxia, initiation problems and unwanted movement. A fuller list of neuro-motor impairments affecting pointing and their remedies can be found in Facilitated Communication Training (Crossley, 1994) and and even fuller list can be obtained from info@candleaac.com

11. Facilitators should be clear about the steps required for fading back to independence but also aware that it may be necessary to restore higher levels of support if the task or situation demands it. Steps towards independence should be made in collaboration with the FCT user. It is sometimes easier to fade for straightforward communication but necessary to provide more support for complex communication.

12. Facilitators should understand the need for and be able to provide alternative communication strategies that enable or work towards independent selection, such as multiple choice options, in addition to facilitation.

13. Facilitators should have a good understanding of a range of AAC options. This should include: hand pointing, head pointing, eye pointing, switch use using step scan, single switch use and inverse auto scan with and without audio prompt and the use and development of low tech communication boards and letter boards as well as a range of high tech communication aids with digital and synthesised speech. They should be able to recognise the value of various access methods as well as know how to operate communication aids. (Level 3 and above)

14. Facilitators should have some form of professional development built into their practice. This might be through: peer group monitoring on a mutual basis, attendance at relevant conferences, or by keeping in touch with relevant issues via the Internet. In ideal circumstances facilitators should participate in in-depth theoretical and practical training. There are a number of courses available that can be accessed in the UK and abroad. (Level 3 and above)

This is essential for successful FCT BUT an individual’s right to use whatever communication they can access is of primary importance, even if multiple facilitators are not available.

16. Ideally FCT users should have multiple opportunities to use FCT throughout their day and across a variety of settings including home, school/work, and community. This is essential for an FCT programme to be really successful but again the user should be allowed to use whatever communication they can access even if there is variation between environments. Facilitators should work together with the FCT user as part of a team remembering that the person who is being empowered should have control of the process.

17. In everyday communication it is important that an agreement exists between FCT user and facilitator in regard to confidentiality. This should be discussed early on in the facilitation relationship and an agreement made about how the FCT user will let the facilitator know what they may convey to others and what should remain confidential.

It is essential that the facilitated communicator is provided with a means of correcting errors – both theirs and their facilitators’ – and taught to use it. On electronic aids this will be the Backspace or Clear keys. Low tech communication boards should always include ERASE, MISTAKE or THAT’S NOT WHAT I WANT.

18. It is essential to use strategies that will ensure that the facilitated communicator is able to indicate when they have finished. This could be pointing to the word STOP, a full stop, FINISHED or some other agreed arrangement.

FCT users should not be subjected to message passing tests or asked to take part in controlled validation experiments without their informed consent and the opportunity to practice the skills required over a period of time prior to testing. Testing should never be carried out in the early stages of facilitation training or during the early training of new facilitators. This is because no one can be assumed to have competence enough to undertake such a task in the early stages of an FCT programme.

21. In the event of any kind of accusation being made against another person by a person being facilitated, treat the communication in the same way that you would that of someone who speaks but also:

Ø Invite a second skilled facilitator to work with the complainant (without knowledge of the exact details) so that the complainant can confirm the details of their complaint. (Email info@candleaac.com for advice if the matter is serious and you have difficulty finding a second facilitator.)

N.B. If the complaint is repeated that does not mean it is true. Normal investigation is still required. No facilitator who does not have at least level 3 training should attempt to verify communication.

Email: info@candleaac.com for further information.An accredited, BA level course in facilitating communication is available at the University of Bolton which can be adapted to meet local needs. This course involves training in the use of FCT but also has a much wider remit. Other areas covered include: AAC, Methods and approaches in special education, person centred supports, record keeping, ICT.LITERACY AND LANGUAGE.It is essential for facilitators to be familiar with a range of AAC access strategies.These guidelines describe the training process assuming that the facilitator is working with the same FCT user throughout the process. Someone coming as either facilitator or FCT user to facilitation for the first time would need to start at the beginning no matter how experienced their partner. This is because the early phase, where what is to be typed or selected is known to all parties, is essential to enable partners to establish a working relationship and so that the facilitator can get some idea of the motor issues that are specific to their partner. As knowledge and confidence builds the user will be more able to express thoughts and feelings.