Informed Consent for a Discredited Technique?

Facilitated CommunicationSpelling to CommunicateRapid Prompting MethodFC in SchoolsEthical Issues

Sep 8

My review of the short film, Axel, last week got me thinking about informed consent. What does it mean and how does it relate to a discredited technique?

The OED defines informed consent as “permission granted in the knowledge of possible consequences, typically that which is given by a patient to a doctor for treatment with full knowledge of the possible risks and benefits.” (emphasis mine)

While Facilitated Communication (FC) is not a medical treatment, per se, it is being used as a primary form of communication for individuals with profound language impairments to make decisions about housing, education, health, religion, marriage, sex, and gender identity. Proponents use FC as if it is an established, evidence-based form of Augmentative and Alternative Communication (AAC).

The International Society for Augmentative and Alternative Communication (ISAAC) is just one organization that disagrees with this stance, btw, and, in their 2014 position statement, does not recognize FC as a legitimate form of AAC, but rather views it as a human rights violation because of the high degree of facilitator control over the messages. In addition, the latest systematic reviews show no evidence that FC messages are independent and questions of facilitator control over the messages remain. (see Systematic Reviews here; Controlled studies here).

The American Speech-Language-Hearing Association (ASHA) also rejects FC as a valid communication technique and warns its members that “the substantial and serious risks of FC outweigh any anecdotal reports of its benefit.” It is worth including those risks here, because many of the proponent sites, like Vermont DAIL and Syracuse University’s Institute on Communication and Inclusion (now, renamed for the third time as “Inclusion and Communication Initiatives”) down play or omit them altogether:

a. Decades of scientific research on FC have established with confidence that FC is not a valid form of communication;

b. Messages produced using FC do not reflect the communication of the person with a disability;

c. FC does not provide access to communication;

d. The use of FC is associated with several harms to individuals with disabilities as well as their family members or teachers; and

e. ASHA’s position on FC is that it should not be used.

On this website, we include Rapid Prompting Method (RPM) under the umbrella term FC, but ASHA makes a distinction in their opposition statement with an additional set of risks:

a. There is no evidence that messages produced using RPM reflect the communication of the person with disability, and therefore there is no evidence that RPM is a valid form of communication;

b. There is emerging scientific evidence that messages produced using RPM reflect the communication of the instructor and not of the person with disability;

c. RPM has been compared to FC on several characteristics, and FC is a discredited technique with evidence demonstrating that messages produced using FC do not reflect the communication of the person with disability but are authored by the “facilitator”; The potential harms associated with RPM include prompt dependency; lost time and money that cannot be retrieved; reduced opportunities for access to timely, effective, and appropriate interventions; and potential loss of individual communication rights; and

d. ASHA’s position on RPM is that the use of RPM is not recommended.

But, for organizations like ASHA, outlining the risks is not all that is needed for “full knowledge of risks and benefits.” Their statements go on to explain that Speech-Language Pathologists have “an ethical responsibility to inform clients, family members, caregivers, teachers, administrators, and other professionals of empirically supported treatments for communication with individuals with communication limitations and to advocate for these treatments.” (emphasis mine). It is not enough to give lip-service to these other techniques. They are to be offered as viable options to parents who are faced with deciding the most appropriate course of action for their child’s programming needs.

If pro-FC films, like “Axel,” “Autism is a World,” “Deej,” and, most recently, “The Reason I Jump,” are indicators of proponent activity, the trend appears to be one of minimizing or rejecting evidence-based methods and promoting FC as the sole form of communication.

Additionally, proponents continuously develop alternative names for FC in what appears to be a deliberate marketing strategy to hide the fact that the discredited technique is being used. It is difficult to keep up with the aliases, but here are some of the more popular names: supported typing, typing to communicate, spelling to communicate, and rapid prompting method.

How is changing FC’s name (without changing the flaws in the technique) a professionally and ethically responsible way to provide potential clients with the information they need to be fully informed of its potential risks and benefits?
Do viewers of these films and other pro-FC literature understand that proponents seem to be advocating the use of techniques that build dependence on an assistant and minimize an individual’s ability to communicate independently?

Many proponents of FC are not Speech-Language Pathologists, but, instead, are educators, social workers, special educators, and other school personnel. In my mind, they are not “off the hook” because they are not members of ASHA. There are many organizations opposing FC/RPM not generally listed on proponent websites (see here for a detailed list) and each of these bring their own sets of responsibilities and codes of ethics to their members.

This raises additional questions:

What makes these individuals more expert on evidence-based communications methods and techniques than ASHA’s SLPs?
What codes of ethics guide these professionals to use a discredited form of communication on their students?
What qualifications do they have for testing FC to determine authorship under reliably controlled circumstances? How do they know the FC-generated messages are truly independent and not the words of the facilitator?
Should school personnel be held accountable for ignoring the scientific evidence regarding FC and rejecting the recommendations of professional organizations that oppose its use?
Would using FC open educators, administrators, and other school personnel up to malpractice lawsuits for withholding legitimate, evidence-based programming from their students?
Do family members understand that the FC guidelines do not protect them or their loved ones from being falsely accused of abuse or being subjected to facilitator crimes?
How many people would say “yes” to FC if they fully understood the risks before being subjected to its use?

Informed Consent for a Discredited Technique?

Vermont DAIL’s Commitment to a Discredited Technique

“Axel” Raises Questions About FC in the Classroom

Facilitated Communication: a thoroughly discredited yet persistent technique