However, besides these positive reasons for creating guidelines, there may be other hidden agendas as well. One such use of guidelines might be to create a situation in which a practice is not prohibited, but in which that practice is made so unwieldy that it has been, for all practical purposes, eliminated. This allows an oversight agency to exercise influence beyond its mandated authority, without taking explicit responsibility for doing so.
In this paper, I will review one state agency's proposed guidelines, explore the unstated biases concealed by the supposedly objective language and procedural recommendations of this document. I will also identify outcomes which are likely to arise, or which in some cases have already arisen, through the adoption of these guidelines. I will contrast these guidelines with those adopted in another state, as a way of demonstrating the wide range of possibilities available to state agencies attempting to support local organizations in their dealings with issues arising concerning facilitated communication.
In a companion article to this one (Lehr, 1994), Sue Lehr identifies issues which should be considered whenever model guidelines con- cerning facilitated communication are proposed.
On February 8, 1994, Thomas Maul, Commissioner of the New York State Office of Mental Retardation and Developmental Disabilities (OMRDD) issued an "Advisory to the Field" regarding facilitated communication. According to the cover letter,
The advisory is intended to furnish information and guidance to consumers, parents, professionals and provider organizations about the status of facilitated communication (FC) as an intervention. It describes potential risks stemming from its use, and offers procedural safeguards.On the surface, then, the OMRDD Commissioner has set out to provide useful information to agencies and organizations which rely on OMRDD for technical assistance. (Of course, OMRDD is also the major funding source for most service provider agencies throughout the state, which gives a good deal of weight to opinions issued in its name.)A Model Guideline which includes an informed consent statement is also enclosed. DDSOs [Developmental Disability Service Organizations] and agencies should feel free to adopt or modify the guideline in order to ensure the prudent use of FC as a treatment intervention in their programs. Neither the Advisory nor the Guideline is mandatory.
My office has received many requests for clarification in this highly controversial area of therapeutic activity. I hope this Advisory will provide much needed guidance.
In fact, the advisory to the field and model guideline reflect the very negative outlook of its authors with regard to facilitated communication. Throughout the document, facilitated communication is seen as 1) totally without scientific merit of any sort, and 2) a threat to staff and family members who permit it to be used. These biases are to some extent concealed from people not involved with facilitated communication beneath the objective- sounding procedural language of the model guidelines, but are very clearly evident in the "Advisory to the Field." The biases are reflected in the model guidelines primarily by its recommendation of procedures which would, if followed, systematically prevent facilitated communication from being used with individuals who have not used it previously, and withdraw access to facilitated communication from most others who currently use it.
Over 30 scientific studies, either published in peer review journals or under submission, raise serious doubts about whether most facilitated messages actually originate from the person with the disability.... [T]o date, scientific support for FC in the form of controlled quantitative research is almost totally lacking (OMRDD, pp. 1-2).In addition, the reasons identified for issuing the Advisory to the Field all reflect this understanding. [This is not surprising, when the source of these concerns is considered; they appear to be based on a paper presented by Gina Green, (1992), and from a similar discussion by Karen Levine and Howard Shane (1993) -- Shane and Green are two of the best-known critics of facilitated communication.] For example, concerns are raised that a) facilitator influence leads to a violation of an individuals' right to self-expression and self- determination, and b) that
[b]y "assuming competence" in people with severe disabilities, we may be denying the existence of a real disability and thereby preventing the person from getting needed help (OMRDD, p. 2).Note that these concerns focus on the risks imposed by "false messages." There's no thought given to the possibility that someone's rights to self-expression or self-determination might be violated by withdrawing a means of communication, or that people can suffer the effects of "presumed incompetence."
2. Facilitated communication creates great risks for staff and families. In the section describing reasons for issuing the advisory, the risk of possible false allegations of sexual misconduct is raised. The Advisory states that
[a]lthough in most cases the resulting charges have been dismissed for lack of corroborating evidence, the accusations are emotionally devastating and costly for families to defend against (OMRDD, p. 2).The clear assumption here is that FC leads to allegations of sexual abuse, which are known to be false because the charges have been dismissed. (In fact, most verbal allegations of sexual abuse by anyone, regardless of disability, do not go to trial because of lack of corroborating evidence; this does not mean that the charges are presumed to be false; only that the prosecutor's office does not feel that there is a strong enough case to press for conviction.)
In discussing the status of facilitated communication in the New York Courts, the Advisory states,
If FC were a readily verifiable form of communication, descriptive accounts of abuse would be extremely beneficial to persons with disabilities, who are vulnerable to exploitation and normally unable to report such incidents. But if the technique yields false communication, the consequence of sexual abuse allegations against family members or staff constitute a tragedy of enormous proportions. Once an allegation of abuse is reported, pursuant to child protection statutes, parents are typically denied visitation with their children, and temporary foster placement may be ordered until the complaint is resolved. Staff accused of misconduct may be placed on administrative leave or reassigned until the matter is adjudicated. Even when charges are dropped, the resulting stigma to accused family members and staff is enduring (OMRDD, Page 3). (Italics added.)This paragraph implies that the greatest risk related to allegations of sexual abuse is the false accusation of family and staff -- it gives little thought to the risk experienced by individuals who are being repeatedly abused, or to the hurt suffered by victims who are not listened to or believed.
The Advisory to the field concludes:
In conclusion, the unsupervised use of FC for persons with severe communication impairments can lead to serious, if unintended, negative consequences for the individual, family members, staff and program administrators. The importance of these negative outcomes is heightened by scientific research reports that cast doubt on the authenticity of FC, and suggest that facilitators may often unwittingly be the source of the typing (OMRDD, p. 7).Clearly, this section was written without any regard for positive consequences of facilitated communication, or for possible negative consequences of its discontinuation.
1. Assessment of baseline skills: the guidelines require a pre-treatment assessment, which is described most completely in the Advisory to the Field:
Prior to the implementation of FC, the treatment team should undertake a comprehensive assessment of the person's language competencies without facilitation in order to determine if the prerequisite skills for FC are present. These would include some evidence of non-facilitated letter and word recognition, the ability to respond logically to simple yes/no questions corroborating known facts, and the capacity to make correct gross motor multiple-choice selections (OMRDD, p. 4).Such screening would eliminate many individuals from the use of facilitated communication (including, for example, most people who now use facilitated communication) who do not do well on such tasks -- even people who now type independently. Such a screening ignores the problems of initiation, perseveration, automatic completion, etc., which are often experienced by people with severe communication impairments.
The demonstration of such "prerequisite skills," however, may also lead the Interdisci- plinary Treatment Team (ITT) to conclude that facilitated communication is inappropriate, since the document states elsewhere that
...the use of FC is generally not a viable option for participants who are able to communicate functionally in an unassisted manner (OMRDD, p. 13).This guideline assumes that "functional communication" is something that either exists or doesn't. It ignores the experience of people with communication impairments who, although able to communicate functionally on certain topics (e.g. choice of food or activities) are able to communicate much more fully and richly through facilitated communication. (See, for example, the narratives in Watts & Wurzburg, 1994).
2. Requirement that all other options for communication have been exhausted: as stated in the Model guidelines:
Once informed consent has been obtained, a screening has been completed, and a decision made to use FC by the ITT, a formal program must be developed and submitted for BMRC approval prior to implementation. The program must be written in behavioral and measurable terms. This program must specify assessment findings indicating that FC is an appropriate training procedure for this individual, including initial, standardized measures of receptive and expressive communication skills. As for all other proposals, the Committee shall require a clear rationale as well as documentation that the ITT has fully exhausted less dependent or ambiguous augmentative communication options (OMRDD, p. 13).The role of the BMRC in this process is very unusual, and reveals the overwhelmingly negative light in which the authors of this document view facilitated communication. Traditionally, Behavior Management Review Committees are not used to evaluate educational, therapeutic or communicative programs. Instead, BMRCs have been used to establish procedures to govern the use of dangerous, damaging and easily abused methods for behavioral change, such as aversives, physical restraint, and "behavior modification drugs." The standards which the BMRC is asked to apply to facilitated communication in this document are very similar to standards used in reviewing programs which incorporate such behavioral approaches: the requirement that the program identify specifically how the techniques will be used in advance, and that it demonstrate that all other possible techniques have previously been exhausted.
This guideline shows a fundamental misunderstanding of the ways in which facilitated communication is typically used. Whenever other means of communication, such as signing, speech, independent pointing, etc., have some functional use, those approaches continue to be used concurrently with facilitated communication. The notion of "fully exhausting other options" creates a false either/or situation that rarely exists in practice. Since many of the other alternatives for augmentative/ alternative communication (AAC) are expensive, time-consuming, and highly demanding of therapists' time, this procedure, if adopted, will de facto postpone or eliminate the initiation of facilitated communication for most individuals.
Interestingly, these guidelines do not recommend that the BMRC fulfill one of its most typical functions: the role of evaluating whether a technique being used contributes to positive behavior change for the individual. Instead, according to the model guidelines,
[t]he BMRC shall closely monitor all programs that it approves with emphasis on validating the authorship of the participants' communications (OMRDD, p. 13).
3. Repeated formal validation: The model guidelines provide two pages of detailed description of what will be considered acceptable validation procedures. To summarize, only double-blind naming tasks (in which facilitators and facilitated communication users do not see the pictures or objects presented to each other), or answering of questions unknown to the facilitator are considered acceptable.
These guidelines do not identify, or even acknowledge the existence of, those testing strategies which have been successful in demonstrating the validity of communication. (See, for example, Crossley, 1994, pp. 85-101; Cardinal, 1993). No mention is made of factors associated with success at such testing: lots of time, feedback, clarification, etc. (Biklen, 1993).
The model guidelines recommend initial validation testing within six months of beginning facilitated communication, with repeated testing at six-month intervals thereafter, even for individuals who have passed previous validation tests.
How will negative results on such tests be used? According to the model guidelines,
...If the results of the evaluation for validity at the end of a 12-month period of FC participation are negative, and if the ITT reaches a consensus that FC will be continued for the participant, the ITT must develop an explicit rationale for continuing FC in preference to a primary focus on other alternative or augmentative communication methods and this rationale must be provided to the BMRC.The BMRC is also called upon to decide whether facilitated communication will continue to be used "in each subsequent instance when the results of a six-month evaluation of FC validity are negative for the participant" (OMRDD, p. 10). In other words, an individual who has demonstrated the validity of his/her communication through formal testing on multiple occasions could still have access to facilitated communication withdrawn if s/he should fail to pass a test upon six-month review.Based on the rationale provided, the BMRC will approve continued use of FC as a primary communication intervention with this participant or decide not to approve continued use of FC with this person (OMRDD, p. 16).
4. Applicability of standards across agencies: Although the advisory to the field specifies that "[t]he adoption of the model Guideline, or any of the recommendations contained in the Advisory, is not mandatory" (OMRDD, p.7), the guideline advocates at several points interagency pressure for adopting such standards.
If a participant is jointly served by another agency and that agency initiates FC training for him/her, the above procedure [for informed consent and BMRC review] must be followed before FC training will be implemented by this agency. The ITT shall encourage clinicians employed by the other agency to adopt similar practices in implementing FC training with participants who are served jointly (OMRDD, p.14).Thus, an agency with a relatively minor role in a person's life may still be in a position to put pressure on schools and families to have the person's continued access to facilitated communication made contingent on the results of formalized testing and other assessment.If FC is provided to a child or youth at school and home, and the child or youth receives family support services from this agency, staff will encourage other providers to use formal evaluation procedures. If significant changes in levels or types of family support services are predicated upon statements of preference originating in the home or school, staff can require systematic evaluation and validation of FC statements prior to implementing these changes (OMRDD, p. 16).
5. Validation of life decisions and actionable statements: For persons who make statements regarding major life decisions (e.g. concerning jobs, roommates, preferred staff, medical care, etc.), there are multiple additional requirements for validation proposed in the guidelines.
In order to have any confidence in the validity of facilitated communications directed toward major life decisions or sensitive areas like sexual abuse, programs should employ formal testing immediately following the apparent production of messages from the person (OMRDD, p. 5). (Italics in the original.)Thus, someone who typed an allegation of abuse during their first week of facilitation would not only have that statement subject to confirmation by an independent facilitator, but would also be required to take part in formalized double-blind or message-passing tests. According to the model guidelines,
Supervisors are required to use reasoned judgement in deciding whether the allegation of abuse obtained through FC is validly authored. Judgement will include consideration of the results of attempts to confirm the authoring of the allegation with the assistance of a second familiar facilitator, findings of the most recent six-month validation of authorship of typing during FC for the individual, and any appraisals by the BMRC and ITT regarding the conclusiveness of authorship evaluations (OMRDD, p. 18).Within these standards, a supervisor who doubts the validity of an individual's facilitated communications because of their failure to pass a formalized test could decide there was not cause for suspicion of abuse, even when the individual had typed a consistent report of the abuse with a second independent facilitator. (The Facilitated Communication Institute advocates the use of an independent facilitator when there is any uncertainty about the authorship of controversial statements [Borthwick et al., 1992]; this approach has been considered "standard operating procedure" by most police departments, prosecutors' offices, and child protective services.)
1. Training: The only mention of training for facilitators is in the following statement:Because of their silence on the issues of training and resources, the guidelines foster a "blaming-the-victim" approach in which an individual receiving grossly inadequate support for facilitation will nevertheless be required to pass validation tests within a one-year period or have access to facilitation discontinued; this could happen even in those situations when the facilitator is someone who has been largely or totally unsuccessful as a communication partner, or in a situation in which, due to staff turnover, the individual has had to work with several inexperienced facilitators during a short time period.The Speech-Language Pathologist (SLP) or Applied Behavior Specialist (ABS) will be responsible for ensuring the adequacy of training of any personnel who facilitated communications with participants (OMRDD, p. 12).The guidelines are silent on the issue of training for those supervisory personnel, or for members of the ITT or BMRC who will oversee all aspects of the facilitated communication program and decide on the adequacy of validation efforts.2. Access to resources: The only time the model guidelines address access to resources, they state:
Whenever provision of FC training is approved through informed consent and BMRC processes, at least two agency employees will be designated as facilitators for the participant. Both of these employees will be responsible for providing individual FC training on a regular and predetermined schedule for the participant, and for developing a wide range of facilitation partners for the participant.What the guidelines do not address are those issues which experienced facilitators know to be essential for the fostering of facilitated communication as a useable part of the individuals' life, such as: 1) individuals' participation in selecting their own facilitators; 2) making facilitated communication an integrated aspect of choice- making, conversation and recreation throughout a person's day, rather than something that follows a predetermined training schedule; 3) giving the individual control over how facilitated communication will be used in that person's activities and relationships; and 4) obtaining access to equipment, controlled environments, and other technical support which will facilitate the development of physical independence and personal control over the communication process.3. Attention to behavioral outcomes and positive life changes: The only reference to these issues is in the model Informed Consent Statement presented in the guidelines:
Benefits noted in case studies include increased ability to communicate through typing with continued facilitation, and occasional improvements in maladaptive behavior, social behavior, and other forms of communication (OMRDD, p. 19). (Italics added.)At no point is anyone (including the Behavior Management Review Committee) encouraged to look at changes in behavior or other positive life changes as having any significance in the decision-making process surrounding facilitated communication.
In summary, then, the consistent message of these guidelines is that facilitated communication is a questionable "treatment," justifiable (if at all) for a tiny minority of individuals as a procedure of last resort, fraught with great danger, and requiring close oversight by psychology professionals to prevent rampant abuse. The message to any parent, advocate, or ITT member who would advocate for beginning or continuing to use facilitated communication with an individual is, be prepared to invest a tremendous amount of energy in justifying and defending this approach, or don't even try.
The effects of this particular set of guidelines extends beyond the borders of New York State -- I know of at least one other state which is considering adopting these guidelines verbatim. [In many ways, these guidelines present a very attractive "package," since they are presented in largely neutral language, and they conform to oversight procedures and terminology which are acceptable to agencies such as Medicaid and ACDD.]
As compared with the OMRDD guidelines, the VDMR guidelines reflect a positive orientation toward facilitated communication, coupled with an understanding of the need for various levels of validation under various circumstances.
Facilitated Communication Training is a technique that assists some people who do not talk or cannot speak clearly to communicate. The technique has been found to help individuals acquire the skills necessary to independently use communication aids. The process has been used in Vermont with children and adults who have a variety of diagnoses including autism, cerebral palsy and intellectual impairment....Studies and reports have shown the technique to be valid and beneficial. However, there has also been skepticism about the process of facilitated communication. There are concerns that it does not accomplish what it asserts....Apprehension about the use of facilitated communication has been stimulated by a number of recent media presentations and published research studies that depict the technique as invalid... In light of this conflict, it is important to look closely at how it is being taught and practiced. Efforts need to be taken to ensure communications are those of the person being facilitated (VDMR, cover letter).In contrast to the approach taken in the OMRDD model guidelines, the VDMR guidelines focus on support rather than control, and see fostering communication rather than validating communication as the primary objective of the guidelines. While recognizing the controversy surrounding facilitated communication, and providing a resource for addressing the issue of validation, the VDMR guidelines place that issue in its proper perspective -- as "an integral and natural part of the process of learning to use facilitated communication (VDMR, p.1)," rather than as a criterion used to determine whether facilitated communication should continue. In contrast to the OMRDD guidelines, they show what can be accomplished when people who are actually engaged in the use of a technique are the ones who take responsibility for describing best practices.