Sunday, January 1, 2012

Massasetts Guidelines for Instructing Teachers of [Students with] Moderate and Severe Disabilities

Congratulations to Massachusetts for its new Guidelines for the Preparation of Teachers of [Students with] Moderate and Severe Disabilities: Instruction on the appropriate use of augmentative and alternative communication and other assistive technologies, December 2011.  Supporting effective communication is a critically important step in supporting self-determination.  

Notable among the guidelines is the inclusion of information on Facilitated Communication Training (Section II Program and Course Design, 2d).  In a recent discussion of these guidelines, a couple of AAC supporters questioned the inclusion of FC training, due to its having been considered a controversial AAC method.  I am glad to see it included in the training guidelines, and I consider its inclusion highly justified.  For anyone who has questions about this, I will provide some information and updates to clarify the issue.  I will also provide some links for additional reading.  This is a complex issue which is sometimes misunderstood and misrepresented.  The best approach to it is to understand the complexity. 


Support from National Advocacy Organizations

Two national advocacy organizations have had position statements that support Facilitated Communication Training for several years:  TASH, Autism National Committee (AutCom).  Although it has not issued a statement in support of FC training, the AAIDD (American Association on Intellectual and Developmental Disability) has removed from its website an old position statement recommending caution in its use.  In light of the demonstrated progress that has been made by many people who use FC to communicate, other organizations are considering writing supportive statements in the coming year. 

In 2011, a landmark documentary film about two men with autism who communicate by typing was released to critical acclaim:  Wretches and Jabberers.  In the film, two men with autism travel around the world in their quest to change the world’s perspective on disability and people who have limited speech.  Both men learned to communicate with fluent natural language through typing with support, using methods of facilitated communication training.  The film was selected by the Autism Society as its featured film for Autism Awareness Month and was screened in many locations around the US during April 2011 and after.  The two stars and their facilitators delivered the keynote at the Autism Society’s national conference in 2011 and have made numerous keynote presentations, including one at the Arc of Virginia 2011 Annual Conference in Virginia Beach.  Both the Autism Society and the Arc have been highly supportive of the film, its stars, and its message. The Autism Society lists Facilitated Communication as a Treatment Option in its brochure Next Steps: A Guide for Families New to Autism. 


Controversy and Discussion

Although the research results have been varied relating to FC, the review and opinion articles which claim that FC has been disproven or “debunked” actually overstate the research results.  They fail to acknowledge or take into account the research studies in which people have been able to communicate their own messages when their facilitators did not know the content of what they wished to communicate. Interestingly, the studies have not all asked the same research question. Some have sought to know whether influence can happen, and other studies have sought to find out if people can communicate their own thoughts and under what conditions. Studies have found that influence can happen, and studies have also shown that people using FC have been able to communicate their own messages unknown to the facilitator.  Bob Rubin addresses the research quite well in his presentation linked below on the ICI website.
The FC Controversy: What is it? Why is there a controversy? by Bob Rubin, Ph.D. http://soe.syr.edu/media/documents/2010/7/Why_the_FC_Controversy.pdf

The information at the following link includes basics about the method of facilitated communication training and about research, with references for research studies on all sides of the issue: 

A related article on supported typing and authorship at the following link provides additional helpful information: 


Best Practices in Facilitated Communication Training

Although there has been controversy about the method of facilitated communication training, it is important to take a closer look to understand what is FC and what is not FC.  In some cases reported in the media and research literature, what has been called FC has been far from the best practice standards which have been developed for FC training. Here is a link to a document listing the elements of Best Practices in Facilitated Communication Training:   http://soe.syr.edu/media/documents/2010/6/FUNDAMENTAL_PRINCIPLES_AND_BEST_PRACTICES.pdf  Including in teacher training some information about these principles and best practices should be of value, because teachers need to know about the method, to recognize good technique, and to understand the many environmental and interactional variables that can be supportive or detrimental to communication success.  They need to know that the goal is independent communication and that this may be a slow and long-term process which may be achieved first through independent yes/no or multiple choice responses before independent open communication is achieved. 


Increasing Reports of Success

There is an increasing number of people who have used this training successfully beginning in the early 1990s to gain verifiable, reliable independent communication.  Many have made notable personal progress in gaining better control of their behaviors and conversational abilities. They have benefited from exposure to print-rich environments and from literacy instruction, which is often not provided to all students who use or need access to AAC, as we know from the many battles of which we hear between parents and schools. A significant number have graduated from high school and college and pursued advanced degrees.  For them, the controversy is over, as Beukelman and Mirenda noted in their AAC textbook. 


Last Resort Method

The method of facilitated communication training is not a perfect method and is typically a method of last resort to get to more effective, fluent communication.  Sometimes it is used in an effort to get any reliable communication, after other methods such as modeling and the use of PECS and sign language and other methods have been tried for years unsuccessfully. FC training can certainly be done poorly, as can any method. In many of the early studies, the training and experience of the facilitators was very limited and was insufficient to teach them strategies for minimizing the likelihood of influence and for teaching the typers to indicate in some way that they were being influenced and not communicating their own messages. Many professionals are waiting for more large-scale quantitative clinical trial research studies with control groups to be conducted so that they might be able to predict what percentage of people will benefit before they will recommend it. Meanwhile, the number of children and adults who are having verifiable success is growing, as their families learn the method and document the specific support that is helpful to their family member and their evidence of independent communication. 

FC training is not for everyone, but it has been a method that has helped some people.  As with any AAC method, success takes a dedicated team that presumes competence and intellect, works together and learns together how to support the individual using the best techniques, works toward literacy and independent thought and effective fluent communication, tries a variety of methods, and never gives up on the person. 


My Perspective

I am a facilitated communication trainer (having completed the introductory FC training and the training of trainers seminar) with an M.Ed. in special education with a specialization in severe and profound disabilities.  I learned the method in the early 1990s and have seen it work with many people but not with everyone with whom it has been tried.  I have followed the research, controversy, successes and failures, progress and setbacks.  People with whom I have seen FCT work have typically been exposed to print-rich environments and have had the opportunity to gain literacy skills.  I have not witnessed spontaneous immediate poetry-writing, perfect spelling, or immediate fluent communication.  The months and years of hard work that may precede the communication of fluent natural language are seldom documented in news reports.  The adults with whom I have worked have typically taken weeks or months to show signs that the method might be one that could potentially be helpful to them—and they have had limited previous success or no success with every other method tried, such as signing, PECS, communication boards, and so forth.  They may have been presumed to have limited understanding and may have had labels of significant intellectual disability, based on their poor performance on tests of intelligence which relied on their impulsive movement, limited pointing skills and impaired motor planning. 

As we know, without reliable pointing or another way to demonstrate understanding, people sometimes assume the individual has limited cognitive ability and limited learning potential.  I see Massachusetts’ move to train teachers about AAC in all its forms and to teach them about how to support people who use AAC as a huge step forward.  Many people with speech impairments still wait in silence for effective communication.  Their progress in improving their communication will depend on the communication supports provided by parents, friends, and professionals in schools and other services.  Giving teachers the skills they need to support students who use AAC or who need access to AAC is a great start. 

Sunday, July 24, 2011

AutCom Policy and Principles on Facilitated Communication

The Autism National Committee (AutCom) is the only autism advocacy organization dedicated to "Social Justice for All Citizens with Autism".  Since 2008, AutCom has had a Policy and highly detailed Principles regarding Facilitated Communication (FC or FCT for facilitated communication training).  Brief excerpts are printed below.


POLICY: It is the policy of the Autism National Committee that everyone has something to say and a right to say it. Facilitated Communication is one accepted and valid way in which individuals with autism can exercise their right to say what they have to say.

PRINCIPLES: 
"People with disabilities (including those on the autism spectrum) who do not communicate meaningfully through speech must have an available means of communication that allows their fullest participation in the world....
AutCom affirms that FC has already proven to be profoundly beneficial in the lives of many people by opening the door to reliable, trusted, and respected symbolic communication for the first time."

Follow this link to read the entire document. http://www.autcom.org/articles/PPFC.pdf 

Tuesday, April 12, 2011

TASH Resolution on Facilitated Communication

The TASH website (www.tash.org) is being revised.  During this time, links to some of the TASH resolutions are not working.  We are providing this copy of the TASH Resolution on Facilitated Communication for reference here in the meantime.  It may also be downloaded from this site:  http://www.docstoc.com/docs/27537042/tash-resolution-on-the-right-to-communicate
Judy Bailey, Chair, TASH Communication (AAC) Committee

 
TASH RESOLUTION ON FACILITATED COMMUNICATION
Statement of Purpose
Facilitated communication (also referred to as facilitated communication training), is one of many augmentative and alternative communication techniques that is used by some individuals who cannot speak or whose speech is limited and who cannot point reliably. The method involves a communication partner, typically called a facilitator (e.g. teacher, friend, parent) providing physical and emotional support as the person points at pictures, letters, words, or other symbols.
Rationale
The method is controversial. In some research studies, individuals using facilitation have not demonstrated that they were able to convey their own thoughts through the method. Some studies have revealed that individuals could be influenced by or pick up on cues from their facilitators. In other studies, individuals have demonstrated the ability to express their own ideas and to do so without influence or cue seeking. Others have progressed from supported to independent typing.
The question of authorship can become particularly controversial when the subject of what has been communicated concerns sensitive issues. Such topics may include, for example, preferences about living arrangements, allegations of abuse, and selection of personal assistants.
THEREFORE BE IT RESOLVED, THAT TASH, an international advocacy association of people with disabilities, their family members, other advocates and people who work in the disability field:

  • regards access to alternative means of expression an individual right.*
  • encourages its membership to become informed about the complexities of facilitated communication training and practice and to stay informed of new research and practice throughout the facilitated communication training process.
  • encourages rigorous and ongoing training for people who decide to become facilitators.
  • encourages careful, reflective use of facilitated communication.
  • encourages facilitators to work in collaboration with individuals with severe disabilities to find ways of monitoring authorship when using facilitation. To this end, TASH encourages use of multiple strategies, including, for example; empirical research methods (qualitative and quantitative) and transitioning to independent typing.
  • urges that when allegations of abuse or other sensitive communications occur, facilitators and others seek clarification of the communication and work to ensure that users of facilitation are given the same access to legal and other systems that are available to persons without disabilities.
It is important not to silence those who could prove their communication competence while using facilitation or any other method of expression.
* See the TASH "Resolution on the Right to Communicate," revised December, 2000.

ADOPTED DECEMBER, 1994
REVISED December, 2000



TASH Resolution on the Right to Communicate

The TASH website is being revised.   www.tash.org   For the present, some of the links to resolutions, such as this one, are not yet working.  We are providing this copy for reference in the meantime.   It may also be downloaded from this site:  http://www.docstoc.com/docs/27537042/tash-resolution-on-the-right-to-communicate
   Judy Bailey, Chair, TASH Communication (AAC) Committee

TASH RESOLUTION ON THE RIGHT TO COMMUNICATE
Statement of Purpose
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.
Where people lack an adequate communication system, they deserve to have others try with them to discover and secure an appropriate system. No person should have this right denied because they have been diagnosed as having a particular disability. Access to effective means of communication is a free speech issue.
Rationale
Access to Communication. All persons with disabilities should be provided therapy and training directed towards permitting them to communicate freely. All people with communication disabilities should be given the full opportunity to use augmentative and alternative communication. "Access" includes a) access to assessment to judge the suitability of the method, b) access to training in the method, c) access to any equipment needed, both in the short term during training and in the longer term for continued use on a daily basis if training is successful, and d) access to training for support people so access to communication can take place across environments.
Education. Instruction in communication is an essential element of the education of people with communication disabilities. People using augmentative or alternative communication must be given any assistance necessary in order to communicate with others at school or in their educational program. Any equipment, training or staffing necessary to enable communication to take place must be supplied, both to that person and to those with whom he or she wishes to interact on a regular basis. The collaborative education team must ensure that all such communication equipment, or comparable equipment, follow the person when transitioning away from the school.
Freedom to Communicate. No person should be able to veto the use of another person's augmentative or alternative communication, and in any instances where such use is forbidden, there should be recourse to the legal and protective systems. People with communication disabilities must be allowed to use the communication system of their own choice in all communication interactions in any setting.
Legal Issues. People using augmentative communication must be permitted to use the system of their own choice in court. Any person using a communication strategy requiring the involvement of another person to receive and relay their communication must be permitted to use the partner of their choice in court. Each state's protection and advocacy system should develop the resources needed to support such full participation in the legal process.
Presumption of Competence in Decision-Making and Advocacy. People are presumed to have an active interest in decisions affecting their lives on a short-term and long-term basis. In planning or decision-making on a person's behalf, that person's participation must be ensured regardless of the formal communication modalities used. This may include the involvement of allies, advocates and communication partners before and after meetings, and may also include the involvement of a "communication ally" during the course of the meeting.
ORIGINALLY ADOPTED NOVEMBER 1992
REVISED December 2000

Thursday, April 7, 2011

The Right to Communicate, Climbing Every Mountain blog by Mary Ulrich

Thanks to Mary Ulrich for this lovely article about the Right to Communicate and a new film "about the life-sustaining power of relationships–the personal connections people make through communication" and "the power of personal assistants and communication partners."

The Right to Communicate, Wretches & Jabberers, Climbing Every Mountain
“Wretches and Jabberers is a movie celebrating disability, advocacy, the right to communicate and autism awareness month: April 2011.”

Not being able to speak is not the same as not having anything to say

Everyone has something to say, even if they cannot speak.  Spread the word about the importance of presuming competence in people who do not speak. 
T-shirt:  "Not being able to speak is not the same as not having anything to say."  
 
This quote is also available printed on a sweatshirt, postcard, tote bag, poster.  Available from Human Policy Press.