Nancy E. Kalina
Facilitated Communication Coalition of Indiana
Address correspondence to: Nancy E. Kalina,
Facilitated Communication Coalition of Indiana, 2853 E.10th Street,
Bloomington IN 47408-2601 USA.
(812) 855-6508 FAX: (812) 855-9630
This article describes the process of supporting four individuals to seek and maintain employment. Each of these individuals have a history of unsuccessful attempts at community employment either due to challenging behavior or difficulties with communication. Given the opportunity to use facilitated communication and to take the lead in job selection, interviewing, and developing relationships with co-workers, each of them experienced success. The article details the compatibility between the goals of supported employment and the use of facilitated communication in advancing those goals.
In its brief time in the public eye, facilitated communication (FC) has generated an incredible amount of publicity and controversy (Weiss, Wagner, & Bauman, 1996; Cardinal, Hanson, & Wakeham, 1996; Ferguson & Horner, 1994; Green & Shane, 1994).
Facilitated communication was first introduced in Syracuse, New York by Douglas Biklen, professor at Syracuse University. Parents, teachers, and other professionals were intrigued by this new technique. Facilitation is a strategy used in communication to physically, support people to make voluntary movements. This has close parallels in the classroom where people are provided physical supports to use a spoon, to make a selection from a supermarket shelf, to use scissors, to kick a ball, or to write. In other words, facilitation is a means of support to assist a person in accomplishing an act. Building on this notion, facilitated communication (FC) could be defined as a technique to assist an individual to communicate his/her thoughts. More specifically, facilitated communication is a training technique by which a facilitator provides physical, emotional and verbal supports to assist a person who has a significant communication disorder to point to objects, pictures, printed letters or words, or to a keyboard in order for the facilitated communication user to communicate his or her thoughts more effectively (Biklen, 1993).
Controversies have focused around the issues of the need for physical support and the unexpected literacy of the individuals who are utilizing the method. For example, the following question has received much attention: "Are these the words and thoughts of the person with the disability or are these individuals being influenced by those who are supporting them?" Several research studies have demonstrated the presence of facilitator influence in numerous situations (Jacobson, Mulick, & Schwartz,1995; Shane, 1994; Rimland & Green, 1993). On the other hand, some studies have proven the efficacy of this method as a sound means of communication (Calculator & Singer, 1992; Crossley, 1992; Rimland & Green, 1993; Sheehan, 1993; and Weiss, Wagner, and Bauman, 1996). In one sense, the controversy is surprising since the techniques used in facilitated communication are similar to other techniques used by parents, teachers, and therapists. On the other hand, the controversy is very understandable, since facilitated communication challenges how we view the competence of the individual whom we are attempting to support.
My experience with facilitated communication began in 1990 in Syracuse, New York. At the time, I was working for Pioneer, Inc., a local supported employment agency, as part of a federal grant conducting research on utilizing natural supports in the workplace. The individuals supported through this grant were people with sensory disabilities and behavioral challenges. In addition, many of them had little or no verbal communication. Many of us working as employment consultants were trained in the method. Slowly, we introduced FC to individuals we believed would benefit from the approach, even though other AAC methods had not been successful.
The two years after my FC training were a learning experience for me. I had already been well trained in supported employment both in graduate school and in my first job; however, the combination of facilitated communication with a focus on natural supports in the workplace transformed both my work as an employment consultant and the kinds of support I was able to offer. Previously, I had taken 100% responsibility for the person's job - in practice, this meant I was controlling the job, and therefore the person as well. Now, I found myself taking on a facilitator's role. I learned never to assume anything. Decisions regarding the job and the job-seeking process moved from me, the professional, to the individual.
Using FC, people whom I supported began interviewing for jobs and explaining their likes and dislikes. They described what they wanted out of a job, rather than having such descriptions originate with a family member or agency employee. As a professional, I had always previously developed jobs without the individual's participation, for fear that the employer would not be able to understand the person. This was no longer necessary, since people could speak for themselves. As a facilitator, I encouraged employers to talk directly to their potential employees. It quickly became clear that when individuals have a means of explaining themselves, others are much more patient with them.
This paper summarizes my experience as an employment consultant as I supported people who used and continue to use facilitated communication to become more active in their job search, employment and daily lives. It is important to note that supporting individuals who cannot speak, but who used facilitated communication forced me to look at four innovations of the last decade with a different set of eyes. These areas are supported employment, natural supports, facilitated communication, and person-centered planning.
According to the federal definition, supported employment means paid work in a variety of integrated settings, particularly regular work sites especially designed for individuals with the most severe disabilities, irrespective of age or vocational potential...
While the supported employment agency where I was working was doing a good job supporting those individuals with very significant needs, we were not as successful with those who had difficulty speaking. There was a significant amount of interpretation and guessing involved to determine people's interests, dreams and needs.
For our purpose at Pioneer, we defined natural supports as any assistance, relationships and/or interactions which:
While we were finding the facilitation of natural supports to be making a big difference in people's lives, there was still a discrepancy in how individualized the supports were, based on whether or not the person could articulate his/her needs. In other words, while facilitating natural supports with people who were nonverbal was helpful, the support became more individualized once people had a means of communicating that could be understood by others (in this case the employment consultant). Therefore, before facilitated communication, decisions were still being primarily made by professionals and family members.
Another tool that supports the locus of control moving from the professionals to the individual is person-centered planning. However, it should be noted that there is both person-centered planning and a person-centered approach to supporting individuals. A person centered planning process encourages listening to the person with a disability, empowering families, and gaining insights based on anecdotal history rather than impersonal, deficit-oriented information found in a case file (Pantaleo, 1993). A person-centered approach to supporting individuals assumes that the employment consultant is attempting to relinquish control over the people served at all times, not just in a planning meeting. In other words, a person-centered approach to supporting people is putting into action what comes about in a person-centered planning meeting. The people I was supporting needed the opportunity to be in control of their daily lives. As an employment consultant, there were times when my role was a barrier to people being in control. I needed to take a step back and minimize my intrusion in their lives. By trying to minimize my intrusion and supporting people to express their own dreams and areas of interest, I found people were more interested in the process of finding their own job. By minimizing my intrusion and allowing people to interview for jobs, I found people with disabilities and employers were more invested when they decided to work together. By minimizing my intrusion and supporting people to make their own connections as opposed to acting as a conduit for co-worker communications, questions, suggestions, and observations that should have been addressed directly to the supported employee, I found that the individual was more likely to be socially included amongst his/her co-workers. By minimizing my intrusion, I maximized the role, the power and the control of the individual.
With the change from a traditional job coach model to an approach that entwines a natural and person-centered approach and facilitated communication for those who can benefit from the technique, my approach to supporting people in general changed dramatically. This paper represents my personal experience as I incorporated what I was learning into my daily practice of interacting with people with disabilities.
Prior to using facilitated communication, I would find out peoples' likes, dislikes, strengths and limitations by spending time with them, their families, and former teachers, and by observing them across many environments. These methods are often fairly effective. The problem is that the data that you would gather may have limited validity. In other words, this information many times is an accumulation of people's "best guesses." However, once individuals with limited verbal ability have a means to express themselves, assessment becomes much easier and authentic; there is far less reliance on speculation by family members and professionals; and we have access to the most important source of information - the individual's themselves. Having access to seemingly small details, for example, knowing that the person is really sensitive to certain noises, can make a crucial difference in finding a good job match for the person. Consider the example below to support this proposition.
When I first met Jason, I observed a gregarious man of 40 who lived in a group home and had few social contacts.
Jason utilized a wheelchair and was difficult to understand when he spoke, due to the effects of cerebral palsy. However, he appeared to enjoy the social aspect of communicating. He appeared to be in need of more opportunities to meet and get to know people. Talking was laborious for Jason. In addition, many times it took him a number of tries to get his message across to his listener.
Facilitated communication was introduced to Jason as something that he might benefit from and something that would aid his job search process as well. He took to it fairly quickly. After a short period of time, Jason and I started to discuss in more depth topics, ideas, and interests that would piece together a fairly good view of who Jason is (as defined by Jason) and what kind of work would be satisfying for him. From the start Jason took an active role in creating his future simply by telling people what he wanted. I encouraged his participation, and his thoughts and wishes were respected.
In addition to having discussions about what Jason wanted and expected, Jason and I visited many different workplaces to become accustomed with different work cultures and different jobs. In these experiences, Jason's communication was facilitated so that he could ask employees at these work places questions that he had. Jason took this as a time of education of what the community has to offer in terms of employment, what type of support he might need, and discovery of what his interests were that he wanted to explore. Previously, this would have been more difficult and less effective. It would have taken a tremendous amount of energy for Jason to have verbally asked one question that may or may not have been clearly understood by the listener. In addition, Jason's communication may have needed to be interpreted by me (as the employment consultant) to the employees. Clearly, Jason benefits when people can understand him without interpretation. This allows Jason's thoughts, opinions, feelings and questions to be truly his and understood by others.
It is believed that a successful job match depends on actively involving the individual in his/her own job search, and on highly individualized job development (Nisbet and Callahan, 1987; Hagner, Murphy, & Rogan, 1992; Hagner and Dileo, 1994; and Mank, 1994). Facilitated communication has made both of these objectives possible with many people with significant challenges - the population for whom supported employment was designed in the first place. As a field, we have struggled with learning how to support those who can't tell us verbally what they need. Hence, those individuals have often gone unserved by supported employment.
Being able to hear what is important to people is crucial if we expect people to be satisfied with their employment. People are motivated to succeed in jobs in which they are personally invested. People succeed when they are addressing their own needs rather than those of an employment consultant or vocational rehabilitation counselor. One example:
Lois had a very clear vision of what she wanted to do - she enjoyed cleaning, and wanted a cleaning job. However, I was uncomfortable with this, because cleaning is a stereotypical "supported employment" job; also, since Lois did not speak, I feared she would become very isolated on the job.
Once I began informally conversing with Lois who communicated with the support of facilitated communication, I began to respect what Lois was requesting, and supported Lois' decision to seek this kind of work. Prior to the use of facilitated communication, I attempted to clearly interpret Lois' gestures, behaviors, and facial expressions. Lois was not only able to articulate her interests with FC, but could also explore and interview for what she wanted. Together, we began to seek cleaning jobs where Lois would be less solitary, and would feel comfortable using FC. Throughout the process, Lois was very clear that any decisions were hers to make.
Lois went on interviews for the first time in her life. Some employers talked to Lois in a respectful manner; others turned their questions to me.
When Lois was offered the position she finally accepted, she had the opportunity to discuss with her employer how she communicated and what supports she thought she would need on the job. Lois discussed with the employer that the method of typing that she was utilizing was called facilitated communication. Lois also explained that prior to her using FC, she had diffficulty communicating with others. An important factor that Lois brought up to her employer was that in order for her to communicate she had to put other things aside (e.g. cleaning). She asked the employer how she felt about Lois needing to break from her duties, occasionally, to be able to talk with her co-workers as well as to obtain information that she might need. The employer expressed to Lois that she understood the concern, and recognized that Lois would enjoy work more if she could interact with people as well as be a more productive worker. When it became clear that the employer supported her in these requests, Lois accepted the job, trusting, before she even started, that she had found a job that would allow her to work successfully and connect with other employees. In the past, Lois would have been a passive participant during the interview and job search process. Using FC to express her thoughts, interests and support needs allowed Lois to assure herself and others of what it was that she wanted and needed in order to feel successful. Finally, a very typical supportive relationship was formed between Lois and her future employer simply by Lois being actively involved during the interview.
It is believed that people are successful on their jobs not just because they can do the job, but because they are liked and socially connected(Murphy & Rogan, 1992; Hagner & Dileo, 1994). People are more easily liked when they can socialize and converse. People who don't speak need some form of augmentative communication to bridge the gap between themselves and those who do speak.
As an employment consultant, I always tried to introduce the supported employee to his/her co-workers, and to identify common interests that they shared. This was always a challenge for individuals who did not speak or have other ways of expressing themselves. They found themselves left out of good-natured teasing, work culture jokes, office parties, etc. Obviously, it is difficult for people to reach out to those who cannot reach back in an understandable way. The changes were clear when facilitated communication was introduced. As an employment consultant, I was able to pay more attention to the social interactions taking place, rather than focusing on teaching job tasks. This allowed me to include co-workers and employers much more than I had in the past. Murphy and Rogan (1992) consider such social involvement imperative to success; it allows the employer to "own" the situation, and removes the employment consultant as an obstacle to inclusion. Moreover, through facilitated communication, the person was speaking up on his/her own behalf, growing as an individual, gaining responsibility, and being visible to the employer and co-workers as someone who makes his/her own decisions. The over-all effect of this was that the person was perceived as being responsible for his/her own job - not the supported employment agency.
Nathan's job was at a large bakery, which functioned somewhat like a factory. Nathan's job was to label the products (specifically the ice cream) before they were distributed.
Despite Nathan's expressive communication difficulties, he was able to understand fully directions given to him by others. It was decided that his supervisor would train him just as she did other new employees. If Nathan had questions, he could seek my assistance to facilitate his communication with others.
Nathan needed some assistance from me in addition to the support that was being offered from his supervisor and co-workers. For example, Nathan needed assistance to determine how to tolerate the loud noises that were in the environment. During job development, Nathan, his employer and I negotiated that Nathan would work when the least amount of machinery was beining utilized. Together, the employer and I discovered that if Nathan wore a Sony walkman, he could drown out the noise from the environment that was distracting him from his work. The training was a true collaborative process between Nathan, the employer, and myself.
Nathan also negotiated changing his job coach. At one point Nathan knew that he would still need some support from the supported employment agency. However, he stated that he wanted a new employment consultant on the job site due to the fact that he felt too emotionally connected to me. The supported employment agency discussed this as a team and immediately attempted to meet Nathan's needs. Another employment consultant was transitioned into Nathan's job site. However, following Nathan's request, I remained his case manager.
Once an individual is established in his/her job, the ongoing supports provided are not necessarily limited to the workplace. Employment consultants often look at other areas of an individual's life to see how the pieces are fitting together. This is a great time to revisit career development, rather than limiting employment to one job (Hagner and Dileo, 1994). Facilitated communication can help greatly with this process. The person will have a means by which to express whether he/she likes his/her job, aspects of the current job that are enjoyable or are lacking, and what he/she hopes to gain from future jobs. Facilitated communication makes a world of difference in this phase of supported employment just as it does in the beginning phases.
In its design, supported employment is meant to be person-centered. At the core of this is listening to, and respecting people's opinions. Facilitated communication has enabled people to enter the workplace as themselves. They can speak for themselves, take the jobs they choose, and quit when they choose with dignity as outlined in the following example:
Cindy is a woman who obtained a job at a grocery store prior to using facilitated communication. Cindy worked satisfactorily for several months with minimal involvement from me. Then there were many complaints from Cindy and her employer. The complaints from Cindy were expressed verbally. It should be noted that these complaints were not easily understood. However, it was clear through yes/no questions and nodding her head that Cindy wanted to keep her job, and her employer wanted this as well. Nevertheless, there was a definite communication problem. Cindy would act insulted any time she was asked to do something that varied from her original job description; she would stomp off angrily, without her employer understanding why. More specifically, Cindy's speech, normally difficult to understand became almost totally incomprehensible when she was upset.
During this time, Cindy was beginning to show some success with facilitated communication. Acting as a facilitator, I set up a meeting in which Cindy and her employer could talk calmly, and in which Cindy could express herself fully using facilitated communication. Cindy was able to both ask questions and answer those which the employer put to her. For example, Cindy stated that she understood her job, but that she got confused when she was expected to do things spontaneously that in her mind were not part of her job. Cindy typed that she felt as if she was being asked to do these other tasks (which she thought of as being treated unfairly) because she had a disability. Finally, Cindy told her supervisor that she did not particularly appreciate being told what to do. With support from me, we discussed that Cindy would probably respond more positively to a request rather than a direction. Cindy's employer listened to Cindy and responded in a respectful and understanding way, which included explanations of requests and negotiations. This allowed the two of them to realize that to resolve this issue, as well as potential future miscommunications, they had to communicate with each other as opposed to depending on me. In addition, both of them had the opportunity to hear each other's concerns, not only express their own.
This meeting led to a series of regular meetings between Cindy and her supervisor. These bi-weekly discussions away from the work site had a depth which could not be realized in informal on-the-job conversations. The busy environment of the grocery store, in which customers and employees frequently demanded the supervisor's attention, did not permit the time needed for Cindy to fully express herself. As the supervisor also learned to facilitate Cindy's typed communication, this increased their ability to know each other as people.
Cindy has been able to maintain her grocery job on a long-term basis. Facilitating an opportunity for Cindy and her supervisor to sit and talk about concerns was the largest element of Cindy's support system. These meetings allowed Cindy to utilize a form of communication that she can only access with support. If this had not taken place, it is probable that Cindy would have resorted to forms of communication that she doesn't need support to express, such as yelling, crying and hitting. This is how she had lost all her previous jobs.
In my admittedly limited experience of providing supported employment services to 15-20 augmentative and alternative communication (AAC) users, I have not seen other forms of augmentative communication work as effectively. This is mainly due to the degree and quality of the communication that can be experienced by an individual choosing to facilitate. A large issue is that with other forms of augmentative communication people other than the individual are still in control of the individual's communication. Staff or family program the devices with the words, pictures or symbols of their choosing. Usually these augmentative communication devices are limited in terms of what can be discussed, and often do not take into consideration the unique work place culture and vocabulary. Finally, sometimes very little training for the individual or for the people who support the person on how to use a particular device is provided.
Facilitated communication allows for tremendous flexibility. People can use a device that meets their individual needs and is of their choosing. Facilitated communication need not be tied to any particular augmentative communication device. Therefore, people can use one device when they are home and in a more stable environment and another that is more portable when they are at work. Finally, facilitated communication allows the person to engage in the typical work culture. People who use facilitated communication and who spell their own thoughts, choose what they want to say, when they want to say it and in the way they want to say it. It allows the co-workers and the employers to truly see people and their personalities. It is a way for employers and co-workers to see beyond behaviors, support staff and the diagnostic labels. Facilitated communication allows people to be seen for who they truly are.
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