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