AAC Campaign--Get people talking about AAC and help more people get access to communication technology, training and ongoing support

We are continuing our efforts to bring awareness and understanding of the need for anyone who has limited communication to gain access to other ways to communicate, termed AAC (augmentative and alternative communication methods). These methods include other ways to speak, write and read such as electronic talking aids, computers, tablet computers, boards and books with pictures, words, and letters, Talking Mats, Communication Passports, eye-gaze, partner-assisted scanning, facilitated communication training, Rapid Prompting Method, gesture and sign language, and captioning. We encourage you to learn more and to teach others about AAC methods and how they can help with expression and with understanding what is being said.

Here are some ideas for learning more about AAC, increasing the visibility of AAC and people who use it, and helping people who use AAC to teach others about communication. Invite a person who uses AAC to make a speech or other presentation. Invite a person who uses AAC to demonstrate their communication method and to have a conversation so that others may learn better to interact with and listen to people who use various AAC systems. Host a film about AAC and invite people who use AAC to share their experiences with the audience. Connect people who are new to using AAC to communicate with mentors who are experienced users of AAC. Work with people who use AAC and their families and supporters to organize fundraising events to raise funds for AAC devices in your local area and to share information about AAC. Get local news media to interview people who use AAC and to print stories about AAC technology, the numbers of people who need AAC but may not have access, the lack of professionals trained in AAC, and related issues.

AAC Visibility and Awareness Project

Tuesday, March 24, 2015

On the subject of Facilitated Communication Training, also called FC or FCT or supported typing . . . 

What follows is a letter written by Judy Bailey, author of this blog, to Ralph Edwards, President of TASH regarding the issue of facilitated communication (FC) training and a recent issue of the TASH journal Research and Practice for Persons with Severe Disabilities (RPSD, 2014, Vol. 39 [3]) on the topic of facilitated communication.  The original letter is reprinted below, with editing to correct a few typos that were missed initially.  This letter has received significant attention from individuals, some of whom are TASH members and some of whom are not, and groups and organizations.  Many have requested to sign onto the letter to show their support for the points it makes, and over 220 have signed as of the date of this posting. This list of additional signers is not included here, because permission has not been sought to make public the list of names.  It is being maintained and updated (for submission to TASH periodically with added names).  The list of attachments that were included with the letter will be available via links soon.  They include lists of research which supports the use of FC along with related articles.  Some documents also provide a glimpse of the magnitude of support there is for FC, as evidenced by people who use it and who have bravely have come forward to tell their personal stories in blogs, websites, and elsewhere.  

TASH responded to this and other letters of concern about the issue of FC and the RPSD journal issue on FC in a statement sent on March 20, 2015 to TASH members.  The Continued Debate about Facilitated Communication:  A Response from TASH’s Executive Director andPresident of the TASH Board.  

We hope that many others will be heard on this issue, most importantly typers and spellers who communicate using FC or RPM (Rapid Prompting Method--which is a separate process from FC, but which is also criticized in an article in the TASH journal).  These voices need to be heard and respected and not silenced.   


Letter sent via e-mail on March 13, 2015
Subject:  TASH support for FC must continue

Ralph Edwards
President of TASH

Dear Ralph Edwards:

I am writing you with a serious concern about the recent discussion within TASH about facilitated communication and the possibility of TASH changing its statement supporting the use of FC.  The effect of withdrawing support of FC and the people who use it as a method to gain effective communication would make the lives of those who currently use it much more difficult.  It might even silence them if professionals are no longer available to support them.  It could also prolong the silence of many people who have been unable to express themselves using many other methods—leaving them in what Chammi Rajapatirana calls “the silent abyss”.  https://www.youtube.com/watch?v=W_IiOLrSsKU

I joined TASH in 1979 and I have been pleased through the years with the progressive spirit and support for innovative practices that has been part of the TASH culture for many years.  I have been especially pleased that TASH has for many years been supportive of people who use Facilitated Communication Training as a method to gain effective communication and to work toward independent typing.  The supportive position statement, resource links including personal stories of FC typers, and the Breaking the Barriers project have helped people to keep an open mind and to locate good information on the method and its implementation.  I am deeply concerned now that the current discussion and recent RPSD articles provide a very limited and skewed view of FC and its effectiveness, largely ignoring the positive research that has been done, and, most importantly, completely leaving out of the discussion people who use FC to communicate. 

To be clear, I fully support the prudent use of Facilitated Communication (FC) Training when implemented following the Facilitated Communication Training Standards established by the Institute on Communication and Inclusion at Syracuse University.  A document describing Fundamental Principles and Best Practices for Facilitated Communication Training is available here:

Through the use of Facilitated Communication Training methods, many people around the world (in the US, Canada, Australia, Italy, UK, Sri Lanka, Finland, Japan and elsewhere) have developed the ability to type independently and to otherwise establish that they themselves are the authors of their typed communication.  Some have learned to speak or have improved their speech after learning to type to communicate.  These individuals through their extremely hard work and the support of their families and others have succeeded in gaining a voice.  As Beukelman and Mirenda stated in their classic Augmentative and Alternative Communication textbook, “For them, the controversy has ended.”  As June Downing has noted, “FC thus offers some individuals with severe and multiple disabilities an opportunity to express themselves and should be considered as a viable intervention option.” (Chapter 11 Communication Skills, in Educating Children with Multiple Disabilities by Fred Orelove et al). 

It would be extremely regrettable for TASH to retract its support for the use of FC and the people who use it.  It would be a departure from our long-held value of “Nothing about us without us”, it would reject the members who use FC and those who work with others to learn to communicate using FC, and it would squelch much of the innovation that is going on around communication. 

I can appreciate that some professionals (in TASH and other organizations) require more quantitative research evidence supporting the use of FC before they would recommend FC for general practice.  This is totally understandable.  I realize that some people only accept as sufficient evidence the results of large-scale quantitative clinical research studies with randomly assigned experimental and control groups.  They may discount and disregard qualitative studies and case studies, clinical experience of practitioners who teach based on performance data on individuals with whom they work, and the testimony of individuals who have communication impairments and their families who present their own experiences—even if those individuals can now type independently.  Some people (including Travers et al, in their article in the RPSD journal) deny that anyone has ever become an independent typer and communicator using FC, despite the living evidence that this is a false assumption (Sue Rubin, Jamie Burke, Lucy Blackman, Sharisa Kochmeister, and others). 

It is critically important to assure that people communicate their own thoughts independently without influence or dictation from others.  We all desire this outcome.   Researchers need to be accurate in their reporting of the research, however.  This statement from the abstract by Travers et al in the RPSD is inaccurate:  “Despite the absence of supportive evidence and abundant evidence that facilitators always author the messages…”   A large-scale quantitative study by Cardinal et al, published in 1996, and other studies have provided instances when individuals have indeed authored their messages. (Cardinal, D. N., Hanson, D. & Wakeham, J.  (1996) Investigation of authorship in facilitated communication. Mental Retardation, 34, 231-242.)

In some research studies, the typed messages have been influenced by facilitators, but not all and not always, despite Travers et al asserting otherwise.  I am appalled that the RPSD editorial staff let this statement stand unchallenged.  That Travers et al would make that claim shows that they are actively ignoring the other research (they did not cite the Cardinal et al study) and blatantly following the agenda which they state clearly within the abstract:  “Our intention is to persuade readers to resist or abandon FC in favor of validated methods and to encourage advocacy organizations to advance agendas that emphasize genuine self-expression by people with disabilities.”  They appear to be attempting to dictate the sole research model to inform and establish any practice (quantitative only, ignoring qualitative methods and case studies), to assert that there is no validation process for communication by an individual using FC (although there actually are various ways to do this), to assert that people using FC are never genuinely expressing themselves, and to insinuate that organizations supporting the use of FC are not emphasizing genuine self-expression.  These assertions, if taken seriously and heeded, would lead to erasing the many years of hard work that people who communicate using FC (including those who type independently all or part of the time) have done to make progress and to establish their true personalities, goals and aspirations.  These assertions are neither respectful nor scholarly. 

The schism in TASH over FC shows people divided over what is acceptable as evidence to inform one’s practice, who may (or may not) control the methods that professionals can implement, who can engage in innovation, who are the experts when it comes to saying what works in an individual’s life (researchers or the individuals themselves), who has a seat at the table to engage in discourse, and who will be heard or silenced (directly or indirectly).  The level of gatekeeping around innovation and self-determination (choice of communication method) is cause for concern and is contrary to the spirit and culture of TASH. 

We are at a point when Facilitated Communication Training must be viewed from the perspective that it has value for at least some individuals, even though it is not possible yet to predict for whom it might be beneficial.  Many individuals around the world have successfully improved their communication and their lives through FC training—with the goal of independent communication, which some have already reached along with learning to speak.  The evidence showing the value of facilitated communication for at least some individuals at present consists of qualitative and quantitative research studies which have investigated authorship and other related issues (development of speech and literacy, discourse analysis, eye-gaze tracking, message-passing, etc.), case studies, personal reports and demonstrations.  An increasing number of people who learned to communicate using FC methods have moved forward in their lives, graduating from high school and college, pursuing graduate degrees, and developing careers. 

TASH should continue to acknowledge that training and adherence to established best practices for the Facilitated Communication Training method are critically important, as with any method.  Practitioners (professionals, families and friends) and FC typers should be well trained and informed about the best practices for using FC training methods.  It is recognized that some people have used very poor technique that does not adhere to FC best practice standards.  TASH can be helpful in assuring that members continue to receive accurate information on the technique, as has been done in the past with webinars and training workshops at conferences by highly experienced FC trainers.  TASH does this with other practices, like inclusion, which have in some cases been implemented badly—and unsuccessfully—in schools up to now.  All the studies showing inclusion as being unsuccessful, and in which inclusion was actually done badly, have not deterred TASH from supporting inclusion throughout life.  Likewise, negative studies on FC (some of which used poor technique) should not be used to cancel out the positive studies, experience and testimony of people who use FC methods successfully. 

Thus, TASH should continue to support the Right to Communicate by one’s chosen method, including the use of Facilitated Communication Training methods, albeit as a last resort method.  As we know, many people around the world still wait for a voice.  Some have tried numerous methods unsuccessfully or with minimal benefit, sometimes being presumed to have cognitive impairments, in the absence of highly effective communication.   With the use of proper caution and the implementation of excellent technique, Facilitated Communication training may benefit some of these individuals.  I hope that TASH will reaffirm its position statement on Facilitated Communication training methods. 

I have attached a list of research and publications supporting the use of FC, along with lists of blogs and videos (with links) by people who use and support FC.  As you will see, this is a complex issue involving many people around the world, albeit a small percentage of people who require augmentative communication methods to express themselves. 

Please let me know if you have any questions or concerns about my position.  I will be glad to provide further information that may be helpful. 

Thank you. 

Best regards,

Judy

Judy C. Bailey, M.Ed.
Consultant on AAC/FC and PBS
Endorsed Positive Behavior Supports (PBS) Facilitator
Project Director, Everyone Communicates
15333 Blueridge View Drive
Centreville, VA  20120-1122
E:mail:  judybailey@aol.com
Phone:  703-220-2948

Attachments: 
Copy of Letter
FC Research on Authorship List
FC Articles and Conference Presentations
FC Books and Personal Stories
FC Blogs and Websites


FC Videos and Documentaries