Vermont DAIL’s Commitment to a Discredited Technique

A few years ago, I was involved in a letter writing campaign targeting Disabilities, Aging and Independent (DAIL) in Vermont. This is a government run organization that actively supports the use and promotion of Facilitated Communication (FC). In fact, a whole section of the government website is devoted to FC. Our concerns were that the site gave a false impression of FC’s acceptance within the scientific community and omitted key information such as systematic reviews, evidence-based research, and a list of organizations with opposition statements—virtually anything that would warn their readers about the dangers of FC.

While writing last week’s blog post, Informed Consent for a Discredited Technique?, I took a peek at the DAIL’s website. The letter writing campaign seems to have backfired. Not only has DAIL continued to promote FC, they seem to have doubled-down on their commitment to the discredited technique. Nowhere on the site (that I can find so far) are there clear statements about the dangers of FC or that the evidence regarding FC and independent communication weighs heavily in favor of facilitator control and prompt dependency. Perhaps it is in the fine print? (I will keep looking).

Douglas Biklen and a facilitator type while the student is looking away from the keyboard. (I AMN NOT A AUTISTIVC OH THJE TYP, Syracuse University training video, 1991)

New to the site is a statement called DAIL’s Commitment to Communication Choice and Facilitated Communication, which includes a brief history of FC in Vermont. The site does not give names, but those of us who follow FC know the first-generation facilitators who worked directly with Douglas Biklen at Syracuse University’s Facilitated Communication Institute (now, after a second name change, called Inclusion and Communication Initiatives). Two of Syracuse’s '“master trainers” working in Vermont can be seen in a 2011 pro-FC film called Wretches and Jabberers (reviewed here and discussed in a blog post here). While Syracuse was taking the heat for promoting a discredited technique (see recommended reading below), Vermont proponents were quietly influencing DAIL and Vermont’s Designated Agencies to use FC, where they still garner support.

Pascal Cheng facilitating Larry Bissonnette by holding on to his shoulder. Bissonnette has some limited verbal abilities and can seemingly recognize some words to read on his own, but only when Cheng is holding on to him do the sophisticated literacy skills emerge.(Wretches and Jabberers, 2011)

I find the following paragraph quite telling about promoters’ unwillingness to address the major flaws in FC, that is facilitator influence and control over the typed messages.

 Vermont assisted in the development of comprehensive Facilitated Communication Training Standards developed by what is now the Institute on Communication and Inclusion at Syracuse University. More recently, new Vermont Facilitated Communication Guidelines were adopted by the Vermont Agency of Human Services. An important component of the new guidelines is the emphasis on training, which is crucial to the effective use of FC. It is noteworthy that, throughout these twenty-five years, the specific standards outlining best practices in facilitated communication training has not substantively changed. (DAIL, 2021) (emphasis mine)

Biklen, in his 1990 article “Communication Unbound” acknowledged that proof of independent typing was “less than ironclad.” Later, in a 2001 court case, he testified that:

The studies generally are showing that, the various studies that have been done, influence may affect anywhere from 20 to 40 percent of FC users and at one - in one context or another, and it doesn't seem to be consistently happening. But to the extent that it happens at all, one has to be very weary [sic?] about it and plan to deal with it. (Biklen Affidavit, August 23, 2001 for the Hahn vs. Linn County case).

Besides the fact that no carefully controlled studies (where the facilitator is blinded from test protocols) show anything but full facilitator influence (100 percent, not 20-40 percent), this statement begs the question of which 60 to 80 percent of FC messages are we to believe and in which contexts? Best practices, I presume, do not include continuing to use a technique that takes control away from the individuals they are trying to help, even if the facilitators are well-meaning or unaware of their influence.

One would think that by 2001, the Facilitated Communication Institute at Syracuse University had been studying FC long enough to respond to the critical analysis of their technique and addressed the problem of facilitator control. But, no, as the DAIL website states they have not substantially changed their training in 25 (now closer to 30) years, despite the fact that the first wave of opposition statements came out in 1994-1995 and remain in place. Persistence is not evidence and longevity does not guarantee efficacy.

Harvey Lavoy grasps Tracy Thresher’s hand and types even though Thresher has his eyes closed. Savoy’s gaze is locked onto the computer keyboard. (Wretches and Jabberers, 2011)

The DAIL’s Commitment statement mentions the Right to Choose and Presumption of Competence. While these are important issues for individuals with severe communication difficulties and sometimes not easy ones to answer, I consider them a bit of a distraction when it comes to whether or not FC is valid or not and here’s why.

The DAIL statement on the Right to Choose seems solid at face value

…individuals have the right to choose their method(s) of communication. With that right comes the responsibility of their support team to assure the appropriate evaluations; acquisition of proper communication devices, as needed; training and technical assistance; data collection and monitoring; and follow-along supports take place. (DAIL 2021)

But, with FC, individuals do not actually get to independently choose their method(s) of communication. In all likelihood, the facilitators do it for them, giving the typed, facilitator-generated messages priority over extant verbal and non-verbal communication. That is why the following organizations oppose FC:

American Academy of Child and Adolescent Psychiatry, American Academy of Pediatrics, American Association on Intellectual and Developmental Disabilities, American Psychological Association, American Speech-Language-Hearing Association, Association for Behavior Analysis International, Association for Science in Autism Treatment, Autism and Asperger Association, Sweden, Behavior Analysis Association of Michigan, Canadian Paediatric Society, Department of Communication Sciences and Disorders of Syracuse, University, Heilpädagogische Forschung, International Society for Augmentative and Alternative Communication, Irish Association of Speech & Language Therapists, National Autism Society (UK), New York State Health Department, National Institute for Health and Care Excellence, New Zealand Ministries of Health and Education, Ontario Association for Behaviour Analysis, Inc., Scottish Intercollegiate Guidelines Network, Speech-Language & Audiology Canada, Speech Pathology Australia, Victorian Advocacy League for Individuals with Disability, Inc.

I listed them because these organizations are not represented on the DAIL site. (See the statements here).

And, further, it is the responsibility of their support team to assure appropriate evaluations, acquisition of proper communication devices, training and technical assistance. No one disputes that. I would point out that it is also the ethical and professional responsibility for the support team to provide individuals access to legitimate, evidence-based methods and techniques and not rely on discredited or unproven techniques that, essentially, take the right to choose away from the individuals with disabilities.

Presuming Competence has been a rallying cry for proponents of FC. From the start, users were urged to provide positive emotional and physical support and, more importantly NOT test the FC-generated messages (see Biklen’s Communication Unbound). There is no doubt that individuals with disabilities, given the appropriate supports, can achieve amazing things, sometimes beyond their caregivers’ expectations. But, presuming competence (e.g., having an expectation that individuals can learn to communicate independently) is not the same thing as evidence that FC works. To the contrary, facilitators essentially impose  their own thoughts and feelings onto the person with disabilities by refusing to keep their own behaviors in check. Because of the ideomotor response (e.g., unconscious or non-conscious muscle movements), we know that facilitators can and do control the typing activity often without a full awareness of their influence.

To say DAIL’s Commitment to Communication Choice and Facilitated Communication is a disappointment is an understatement. I will be checking into the Vermont Facilitated Communication Guidelines, Abuse Allegations through Facilitated Communication Guidelines, Annotated Communication Resource Guide, and Research in future posts.

References and Recommended Reading

Auerbach, D. (2015, November 12). Facilitated Communication is a Cult That Won’t Die: This discredited technique for communicating with profoundly disabled people is being pushed into public schools. Slate.

Burgess, C.A., Kirsch, I., Shane, H., Niederauer, K.L., Graham, S.M., Bacon, A. (January 1998). Facilitated Communication as an Ideomotor Response. Psychological Science, 9(1), 71-74. https://www.jstor.org/stable/40063250

Burke, M. (2016). Double Talk: Syracuse University Institute continues to use discredited technique with dangerous effects. The Daily Orange.

Burke, M. (2016, April). How facilitators control words typed in facilitated communication without realizing it. Daily Orange.

Gorman, B.J. (1998). Facilitated communication in America: Eight years and counting, 6 (3), 64. Skeptic.

Hemsley, B., Shane, H., Todd, J.T., Schlosser, R., and Lang, R. (2018, May 22). It’s time to stop exposing people to the dangers of facilitated communication. The Conversation.

Jacobson, J.W., Mulick, J.A., Schwartz, A.A. (1995, September). A history of facilitated communication: Science, pseudoscience, and antiscience. Science working group on facilitated communication. American Psychologist, 50 (9), 750-765.

Jarry, Jonathan. (2019, November 8). Who is Doing the Pointing When Communication is Facilitated. McGill Office for Science and Society.

Simmons, W..P., Boynton, J., and Landman, T. (2021, February). Facilitated Communication, Neurodiversity, and Human Rights. Human Rights Quarterly. Volume 43 (1), 138-167. DOI: 10.1353/hrq.2021.0005

Sobel, S. (2018). Facilitated Communication Redux. Skeptic. 23.3

Spitz, H. (1997). Nonconscious Movements: From Mystical Messages to Facilitated Communication. Routledge. ISBN 978-0805825633

Travers, J., et al. (2015, January 7). Facilitated communication denies people with disabilities their voice. Research and Practice for Persons with Severe Disabilities, 39 (3), 195-202. DOI: 10.1177/1540796914556778

Wegner, D.M., Fuller, V.A., and Sparrow, B. (2003, July). Clever hands: uncontrolled intelligence in facilitated communication, Journal of Personality & Social Psychology, 85 (1), 5-19. DOI: 10.1037/0022-3514.85.1.5