Everyone Communicates

Welcome to Everyone Communicates!

As our name indicates, we believe that everyone communicates, in one way or another. We also believe that communication is a basic need in life. When an individual does not have fluent, natural speech, it is urgent that other methods of communication, often called augmentative or alternative communication (AAC), be explored exhaustively.

Being unable to speak does not mean that an individual does not understand, cannot learn to communicate, or cannot think and reason. It only means that the person has a barrier to communication. With access to a variety of methods, and with creative, attentive, and dedicated people providing support, people with communication impairments caused by a wide range of disabilities can work to develop effective communication.

Monday, January 9, 2017

Happy 2017! We wish for EVERYONE a year of peace, love, and understanding with heartful communication!

Thursday, March 31, 2016

TASH New Resolution on the Right to Communicate 2016

TASH Resolution on the Right to Communicate – Cover Letter

The TASH Board of Directors has revised and finalized a new Resolution on the Right to Communicate in response to member recommendations. The Resolution was reviewed and supported by these prominent TASH members, many of whom worked together on the revision. We thank these members for their support and dedication to TASH’s mission.
Judy Bailey
Fredda Brown
Pascal Cheng
Harvey Lavoy
George Singer
Tracy Thresher
Julia M. White
Don Cardinal
Marty Agran
Fred Spooner
Christy Ashby
Rob Horner
Jean Trainor
Nate Trainor
Darlene Hanson
Susan Yuan
Mary Falvey
Jeff Strully
Pat Mirenda
Rita Rubin
Sue Rubin

As an organization, TASH has always supported the right of all people with disabilities to full and equal access and meaningful inclusion in schools, the workplace, and communities. This has long included a focus on the fundamental right to communicate. For more than two decades, TASH has had a statement on the Right to Communicate. This resolution reaffirms TASH’s support for the right of people to utilize their desired means of expression, including access to the alternative and augmentative communication systems and supports of their choice. For many years, this resolution specifically listed Facilitated Communication (FC) as one of those possible systems or methodologies.

At the most recent TASH conference in 2015, a small group of interested members met, including researchers both in support of the method and those that are not in favor of its utilization, practitioners, and an individual who uses FC. Their discussions included concerns related to scientifically based research around FC and the perception that, in light of recent events in the media, TASH was withdrawing its support for FC, and in turn, individuals who use FC. The outcome of this almost four-hour meeting was a suggested revision to the Resolution on the Right to Communicate that included the removal of facilitated communication from specific mention in the statement. The rationale for removal was to recognize that while TASH continues to support the fundamental right of all people to communicate using their desired method and have that communication respected by others, it is not the position of the organization to recommend, support, or deny any specific communication device, approach, or methodology. The revised Resolution on the Right to Communicate, drafted by these members, is intentionally broad so as to be relevant to all people with communication needs and to be responsive to the ever evolving research in the fields of developmental disability and communication.

The drafters of this revised resolution are hopeful that this change is not perceived as a weakening of support for individuals with complex communication needs and their rights to have their preferred communication methods available and supported. Facilitated Communication has always been subject to controversy which continues today. However, there are many members of TASH who have benefited from this method and their communication must be fully considered.

We trust that all TASH members are united in a belief that the role of TASH is to support its members and to be in alliance with all people with disabilities who face oppression, marginalization, and doubt. A grounding principle of TASH is the presumption of competence and self-determination, which necessitates a willingness to consider all possibilities and provide the widest range of options for communication for all people.

Sincerely,

Ralph Edwards, President

Barb Trader, Executive Director

TASH is an international leader in disability advocacy. Founded in 1975, TASH advocates for human rights and inclusion for people with significant disabilities and support needs – those most vulnerable to segregation, abuse, neglect and institutionalization. TASH works to advance inclusive communities through research, education, and advocacy. The inclusive practices TASH validates through research have been shown to improve outcomes for all people. More information about TASH can be found atwww.tash.org.

TASH | 2013 H Street NW, Suite 404 | Washington, D.C. 20006 | (202) 540-9020 | info@tash.org
Copyright © 2015 TASH, All rights reserved.
http://tash.org/resolution-right-communicate-cover-letter/

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, and are presumed to have an active interest in communicating their decisions and choices. 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; and
• that their communication is heeded by others.

Where people lack an adequate communication system, they deserve to have others collaborate 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

Freedom to Communicate. People with communication disabilities must be allowed to use the communication system of their own choice in all communication interactions in any setting. In no case should an individual be left without a means to communicate. This includes all forms of augmentative and alternative communication, assistive technology, and access to a variety of effective methods and strategies. In any instances where such use is forbidden, there should be recourse to the legal and protective systems.

Access to Communication. All persons with disabilities communicate, and should have access to opportunities to learn to communicate effectively. All people with communication disabilities should have continuous access to and use of augmentative and alternative communication. “Access” includes: a) access to assessment to aid in choosing a suitable 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 skilled and trained support partners so communication can take place across environments; e) access to ongoing evaluation of progress in whatever method the individual chooses and modifications as indicated; and f) access to adequate funding to ensure long term training, support, and needed equipment.

Education and Life-Long Learning. Instruction is an essential element of learning to communicate. People using augmentative or alternative communication must be given any assistance necessary in order to communicate with others across the life span. The individual support team must ensure that any equipment, training, or staffing necessary for continued communication is provided to that person and to those with whom he or she wishes to interact on a regular basis. The individual support team must ensure that the person’s communication system and supports follow the person when transitioning across the life span.

Respectfully submitted by:
Judy Bailey
Fredda Brown
Pascal Cheng
Harvey Lavoy
George Singer
Tracy Thresher
Julia M. White
Don Cardinal
Marty Agran
Fred Spooner
Christy Ashby
Rob Horner
Jean Trainor
Nate Trainor
Darlene Hanson
Susan Yuan
Mary Falvey
Jeff Strully
Pat Mirenda
Rita Rubin
Sue Rubin
For more background information on the Resolution on Right to Communicate, view the cover letter.

http://tash.org/about/resolutions/tash-resolution-right-communicate-2016/

Saturday, October 24, 2015

Today we are participating in the 7th Annual International AAC Chat (also called Read-a-Thon, because the chatting is done by typing messages online). If you wish to participate, join us on the Facebook page International AAC Awareness Month and ask to join the chat, too, if you like. We will be posting information, resources, advocacy and more throughout the 24 hours of the Chat, which started today (October 24, 2015) at 8:00 a.m. Eastern Daylight Time (USA) and will continue nonstop until 8:00 a.m. tomorrow (October 25, 2015) EDT. We hope that you will spend time reading, listening, chatting, learning, exploring, teaching, sharing, advocating, and maybe getting involved in some activism online or in your local area today and also moving forward. Anyone can lose access to their voice at some time in life for various reasons (intubation in the hospital, stroke, injury, illness, cancer, etc.). It could happen to someone you know--or even to you!--so be prepared with the knowledge that there are many, many other ways to communicate and with the determination to get involved in making sure that everyone has a voice of their choice throughout life to talk to anyone, anytime, anywhere about anything they wish.

Sarah Blackstone, a well-known speech-language pathologist who teaches about AAC said it well: “Despite the proven efficacy of AAC as a treatment approach for individuals with complex communi¬cation needs, an individual’s access to AAC services typically depends upon (1) where they happen to live, (2) what their doctor already knows about AAC and (3) how aggres¬sively they, or their family mem¬bers, seek help from professionals who provide AAC services. Even today there are speech-language pathologists in hospitals, healthcare agencies and private practices who actually turn people away, saying, ‘We don’t do AAC.’“ Sarah W. Blackstone, Ph.D. CCC-SLP, Augmentative Communication News, Feb. 2007

Help us work toward a voice of one's choice throughout life for ALL. Everyone needs to communicate effectively. Everyone can and does communicate. We need to learn to listen and to support communication for all. Everyone can learn to communicate more effectively. Presume that everyone has the competence to learn to communicate and act on it now!

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:

http://soe.syr.edu/media/documents/2010/6/FUNDAMENTAL_PRINCIPLES_AND_BEST_PRACTICES.pdf

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

Wednesday, October 23, 2013

Blogs and websites with writings by people who use AAC to communicate and their parents and supporters

Blogs by individuals who use AAC

Lynn Aquilana – Mill-Pinna tieghi . . . (in Maltese)

http://lynnaquilina.wordpress.com/page/5/

Amanda Baggs – Ballastexistenz

http://ballastexistenz.wordpress.com/

Agnes Bal – From the Cradle to the University (in Polish)

http://oddajemyprocent.blogspot.com/2013_09_01_archive.html

Heathar Ashley Barrett – Twitter @Heatharashley

https://twitter.com/heatharashley?lang=en

Larry Bissonnette – Larry’s Blog

https://www.wretchesandjabberers.org/larry-and-tracy/larry-blog/

Andrew Bloomfield, Andrew’s Bridges

http://andrewsbridges.blogspot.com/p/who-am-i-about-myself.html

Niko Boskovic
https://nikoboskovic.wordpress.com/

Brayden – Brayden’s Blog

http://braydenfsblog.weebly.com/blog

James Brosnan – Jumping Spastics

http://jumpingspastics.blogspot.com/2011/01/voice-and-its-channels.html

Cindi’s Blog

http://cindisblogtwo.weebly.com/

Elana Rose Connor – Elana Rose

https://www.elanarose.com/blog/page/1

Sydney Edmond – Sydney’s Writing

http://www.aut2communicate.com/Sydneys_Poetry.html

Carly Fleischmann – Carly’s Voice

http://carlysvoice.com/home/aboutcarly/

Henry Frost

http://ollibean.com/tag/henry-frost/

Peyton Goddard – Peyton Goddard: Advocate for Inclusion

http://peytongoddard.com/

Thiandi Grooff

http://www.thiandigrooff.nl/

Growing Kids Therapy Center blog
https://growingkidstherapy.wordpress.com/

Joshua Harris – Joshua’s Planet

http://www.joshuasplanet.com/index.html

Koren Henning – Koren’s Korner

http://korenskorner.wordpress.com/

Glenda Watson Hyatt – Do It Myself Blog

http://www.doitmyselfblog.com/

Marlena Katene, theaacjournalist, YouTube channel http://www.youtube.com/user/theaacjournalist?feature=

Kati – Kati’s Blog

http://katilea.wordpress.com/about/

Ido Kedar – Ido in Autismland

http://idoinautismland.blogspot.com/

Brian Kajiyama – Brian’s Ramblings

http://bkajiyama.blogspot.com/

Ben Kingston – The True Ben Kingston

http://thetruebenkingston.blogspot.com/

Chris Klein – No Barriers

http://www.nobarriersusa.org/people/chris-klein/

Sharisa Kochmeister – My Surreal Life

http://sharisa-kochmeister.blogspot.com/

Lateef McLeod - Lateef’s Thoughts

http://teefdabiggafigga.blogspot.com/

Beth Moulam – Beth Moulam and LIFE

http://www.bethmoulam.com/

Chris Patton, Lopsided Heart Creations – Poetry by Chris

https://www.lopsidedheartcreations.com/

Chandima (Chammi) Rajapatirana

http://easesrilanka.org/

Michael Brian Reed

http://michaelreedsblog.blogspot.com/

Barb Rentenbach

http://muleandmuseproductions.com/

http://muleandmuseproductions.com/blog/

Lee Ridley – Lost Voice Guy

https://www.facebook.com/LostVoiceGuy

Peter Rowe

http://peter-rowe.info/

Sue Rubin

www.sue-rubin.org

Darryl Sellwood

http://thedazz.com/

Amy Sequenzia – Nonspeaking Autistic Speaking

http://nonspeakingautisticspeaking.blogspot.com/

Jeremy Sicile-Kira – Jeremy’s Vision

http://www.jeremysvision.com/

Sean Sokler – Sean’s Shoutouts

http://seansshoutouts.blogspot.com/

Simon Stevens – Simon Stevens Viewpoint

http://simonstevensviewpoint.blogspot.co.uk/

Sarah Stup – Are Your Eyes Listening?

http://sarahstup.com/blog/2013/06/sarah-real-true-and-shy/

Ryan Tilton - Non-Speaking Not Silent: AAC Apps, Service Dogs, My Experiences as an Autistic Female
http://nonspeakingnotsilent.blogspot.com/

Tracy Thresher – Tracy’s Blog

https://www.wretchesandjabberers.org/larry-and-tracy/tracy-advocacy/

Karly Wahlin – Inspired by Love

http://spiritdances.wordpress.com/

Lydia Wayman – Autistic Speaks

http://autisticspeaks.wordpress.com/

Mike “X” – Journal of an Autist

http://journalofanautist.blogspot.com/

Blogs and websites featuring writings by individuals who use AAC:

1 Voice Communicating Together Blog

http://www.1voice.info/using-social-media-and-internet-my-dynavox

Bridges-Over-Barriers Communication Support Initiative – newsletters

http://www.ont-autism.uoguelph.ca/bridges.shtml

The Communication Mentors Network

http://www.communicationmentors.org/stories.htm

ISAAC – AAC Awareness – Archive Material

· 2010 – Many Cultures, One Dream: Communication Without Barriers, Story Collection 2010 Submissions

· 2009 – Many Methods, One Goal: To Communicate, 2009 Story Submissions and Video Collection

· 2008 – Many Stories, One Voice AAC Story Collection

https://www.isaac-online.org/english/aac-awareness/archive-material/

Kilometres for Communication – Stories

http://kilometresforcommunication.com/stories/

Let’s Talk AAC blog: Communicators in Action

https://aaclanguagelab.com/blog/category/communicators-in-action

Pittsburgh Employment Conference Proceedings 1995-2011 at the SHOUT website

http://www.shoutaac.org/pastpecconferences.htm

Watch Our Words, a group of FC typers and facilitators in Colorado. In-home and large group trainings are conducted by FC typers with the help of their facilitators. Their website holds some of their writings—See the “We speak” section. Chris Patton, Sharisa Joy Kochmeister, Jaison Hart, Mike Hoover. http://www.wowcolorado.org/index.htm

The Writers Brigade

http://aac-rerc.psu.edu/index.php/projects/show/id/16

Blogs and websites by parents and others who write about personal experiences with AAC

Larry Blumenthal – Life with Clay

http://lifewithclay.com/

Char Brandl – Grandma Char’s Lessons Learned

http://www.grandmacharslessonslearned.blogspot.com/

Katie Clarke

http://katieclarke2014.wordpress.com/

Lisa Domican – The Grace App Blog

http://www.graceapp.com/blog/

Hollly Gray – Caleigh’s Corner