“New” Vermont Facilitated Communication Guidelines. Really?

Facilitated CommunicationEthical IssuesPolicy

Sep 21

As a follow up to last week’s blog post, I decided to have a closer look at Vermont’s Facilitated Communication Guidelines. In the Department of Disabilities, Aging, and Independent Living (DAIL) Commitment to Communication Choice and Facilitated Communication statement, readers are told that new guidelines had been adopted by the Vermont Agency of Human Services. I compared the “new” June 2021 Facilitated Communication guidelines to the 2018 version. As far as I can tell, the two are exactly the same. Word for word. If I have missed something, please let me know.

*Vermont Facilitated Communication Guidelines endorsed and promoted by DAIL on the Vermont government website. Are public funds going toward a discredited technique?*

This “new” version purportedly emphasizes FC training, which they say in the Commitment statement, is noteworthy because it has “not substantively changed” in twenty-five years. Two things about this. First, I could not find any mention in the updated FC guidelines that emphasized training any differently than it did in the 2018 version. Second, a flawed technique that relies on facilitator cuing, builds dependence on the assistant, and prevents individuals from accessing legitimate, evidence-based forms of Augmentative and Alternative Communication (AAC) does not get more effective with additional training. Rather than being a point of pride, I submit that substantive changes need to be made to FC in order to alleviate its inherent flaws.

The FC Guidelines are based on the premise that Facilitated Communication (FC) is a valid communication technique to use with individuals with severe communication difficulties. It is not. To date, proponents have failed to prove that the communications are anything but facilitator generated. Controlled studies and systematic reviews reliably and repeatedly demonstrate facilitator authorship and most major health, education, and advocacy groups oppose its use, citing issues with facilitator control, prompt dependency, time and opportunity costs, and concerns about false allegations of abuse as just some of the reason why FC is not recommended. The Vermont FC guidelines do raise the issue of informed consent, but none of this information is included in the guidelines. I wonder about how informed parents and clients can be if they are not made aware of the fact that FC is a discredited technique. I explored this topic in a previous blog post, here.

The purpose of the guidelines is to “provide a set of consistent standards for the delivery of services to support the use of facilitated communication (FC) as a means of communication for individuals receiving disability services in Vermont,” purportedly achieved through assessment for candidacy, training in FC, consultation with team members, and review of progress. On paper, this all seems reasonable and responsible, if by responsible, one means maintaining a façade that FC is a viable option for individuals with profound communication difficulties. Again, it is not.

The DAIL and, apparently, the Vermont Agency on Human Services, want readers to believe FC is a legitimate and established form of Augmentative and Alternative Communication (AAC) and that it is appropriate for use with individuals with disabilities. It is not. The “communication partner” is not a partner, but the controller of communications. FC builds dependence, not independence on the facilitator. The American Speech-Language-Hearing Association, International Society for Augmentative and Alternative Communication, American Association on Intellectual and Developmental Disabilities, and others do not recognize FC as a legitimate form of AAC. The American Academy of Pediatrics, in their January 2020 publication called “Identification, Evaluation, and Management of Children with Autism Spectrum Disorder” puts it most succinctly:

”Current scientific evidence does not support the use of facilitated communication in which a nonverbal individual is guided to communicate. This differs from AAC, in which the individual is taught to communicate independently.” American Academy of Pediatrics (January 2020)

I have yet to find on the DAIL site any reference to the 20+ organizations who oppose FC use. Those statements are available here.

The guidelines define candidates for FC as needing assistance pointing independently or reliably. I find this interesting, since in pro-FC movies and YouTube videos, none of the individuals featured have any difficulty whatsoever with fine and gross motor skills. They are depicted using a paintbrush to paint fine details on drawings, taking photographs, feeding themselves with regular (non-modified) utensils, riding bicycles, shaving, pouring coffee, and myriad other activities that require fine and gross motor skills. The claim for fine motor support is dubious at best, but, even if an individual did have problems with fine and gross motor skills, impulsivity, regulation of movement, poor eye/hand coordination, reduced proprioception and difficulty with initiating and sustaining movement (say, as someone who has severe forms of cerebral palsy), current technology exists to allow these same individuals to engage with communication devices independently. Adjustments can be made for response time, body position, eye gaze, and mobility which allow individuals to operate communication devices without interference from a facilitator. Dr. Howard Shane of Boston Children’s Hospital discusses some of these issues in a webinar hosted by the National Council on Severe Autism.

The guidelines emphasize a comprehensive communication plan, which sounds good on paper, but in practice, proponents appear to reject many evidence-based measures. Part of the allure of FC is proponent claims that it “works” when evidence-based measures fail to meet parents’ expectations. A couple years ago, I attended an online webinar (Stuart Vyse wrote about it here) with a leading FC proponent who described FC as the “technique of last resort.” To me, this signals that FC leadership have some awareness that “candidates” for FC may be parents who are desperately seeking answers for their children and are willing to try anything, including a technique that is inviable and unproven—disproven, even. Increased training “requirements” means more people paying for FC workshops to practice a technique that does not work. Just who is this technique benefiting?

In practice it seems that proven AAC techniques and methods are diminished or dismissed altogether as individuals subjected to FC achieve unexpected levels of literacy without demonstrating requisite language comprehension, reading and written language skills. Pro-FC movies like “Wretches and Jabberers,” which features facilitators and clients from Vermont, “Autism is a World,” “A Mother’s Courage,” and “The Reason I Jump,” depict proven, evidence-based measures as too simple or somehow demeaning for the clients. In some case, the clients’ verbal and non-verbal communications are ignored altogether as facilitator-generated messages are given priority.

The remainder of the guidelines discuss assessment and training for FC, service provider support of FC, and protocols for allegations of abuse, which I will write about in future posts. In the meantime, I’ll leave you with a few questions:

1) Who is doing the assessment and qualifying people for FC? What are the ethical and professional responsibilities of Speech/Language Pathologists, psychologists, psychiatrists, pediatricians, educators or others who continue to recommend a discredited technique to their clients?

2) FC is not a licensed or regulated practice in the way SLPs, psychologists, etc. are monitored. Facilitators come from a wide variety of backgrounds and are not necessarily trained in speech/language development, literacy skills development (reading and written language), autism, or other disabilities. What qualifies facilitators to make decisions about programming for areas in which they are not licensed or trained?

3) How is progress assessed when facilitators are discouraged—not encouraged—to test for independent communication? How is “independence” achieved when facilitator control through cuing is integral to the technique?

4) By calling FC a form of AAC, are public funds illegitimately being used for Medicaid reimbursements and/or staffing positions for the Vermont Designated Agencies or educational technicians in the school systems? What are the ethical and, perhaps even legal, ramifications for using these funds to support a discredited technique?

“New” Vermont Facilitated Communication Guidelines. Really?

Vermont Allows Abuse Allegation Disclosures and Interviews Using a Discredited Technique

Vermont DAIL’s Commitment to a Discredited Technique

Facilitated Communication: a thoroughly discredited yet persistent technique