HD4 - House Joint Resolution 38: A Study of Facilitated Communication in Virginia
Executive Summary: In the past three years a new method of assisting persons with severe communication disabilities has been introduced in the United States. Facilitated communication, initiated in this country in 1989 by Dr. Douglas Biklen of Syracuse University, has opened the possibility of a new world of interaction and education to individuals who, heretofore, were seemingly unable to participate in many academic and personal communication activities. The method is still under considerable study, but because of the significant opportunities it holds for people with severe disabilities it has found its way quickly into homes, classrooms, special education programs, and work settings in Virginia and across the country. Because it is still so new and there are as yet few research studies examining the method, there has been some controversy and discomfort with the use of facilitated communication and with the resulting communication it elicits from some individuals who have never had an outlet for communicating their feelings and thoughts before. For these reasons, access to facilitated communication has been limited in some areas while being fully embraced and promoted in others. The 1992 Virginia General Assembly passed a study resolution, HJR 38, relating to the provision of facilitated communication services in Virginia (Appendix A). The resolution requested that the Department of Rehabilitative Services (DRS) in conjunction with the Department of Mental Health, Mental Retardation and Substance Abuse Services (DMHMRSAS) study the viability of and prepare a plan for the development and implementation of facilitated communication programs across the Commonwealth. In response to this resolution a study task group was convened, directed by DRS and DMHMRSAS with representation by individuals from these Departments as well as representatives of the Department of Education, private and public service providers, consumers and consumer groups, and researchers (Appendix B). The draft document was reviewed by a sample of agencies and organizations representing consumers, service providers, and educational institutions and systems (Appendix C). The study undertook (1) to examine the viability and validity of facilitated communication as a mode of augmentative communication for people with disabilities, (2) to examine the status of the implementation of facilitated communication in Virginia and in several model programs outside of Virginia; (3) to clarify the issues surrounding facilitated communication, (4) to make recommendations about implementation within Virginia, and (5) to determine the needs for support, study, and in-service and pre-service training resources to support the recommendations. Information was gathered through the exploration of experiences with facilitated communication by individuals with disabilities, their families, and the professionals working with them, a review of the research, descriptive literature and public press coverage on facilitated communication, a cursory survey of service providers in Virginia, and contacts with several programs outside of Virginia that have introduced facilitated communication system-wide. Reviewers of the final draft of this report were invited to submit a written statement of their organizations' positions on facilitated communication. Comments were received by these reviewers and are reflected in the final draft; but no formal position statements were received. It is apparent that there are still many unanswered questions about facilitated communication and that ongoing clinical investigation is needed. Programs exist in Virginia which are using this method of communication in unique ways, and research in these programs could provide some answers and models for the implementation of facilitated communication. There are many implications for the use of facilitated communication, including concerns regarding validation of the process, how it will be paid for, and the fact that facilitated communication is a method for allowing individuals to communicate with others -- not a cure or a treatment for their disability. Despite all of these important implications, the most significant may be the change in the quality of an individual's life when facilitated communication allows him or her to communicate with family, peers, and community members. This ability may lead to increased independence for the individual, the power to make his or her own decisions, and the opportunity to be included in family, school, spiritual or religious (e.g., church, temple, mosque), work and community activities that were previously inaccessible to the individual. For these reasons, this work group has accepted Donnellan's (1984, 1992) criterion of least dangerous assumption - that is, "In the absence of conclusive data, educational [and other] decisions should be based on assumptions which, if incorrect, will have the least dangerous effect on the student." (Donnellan, 1984, p. 142). In this approach, the danger of not offering this mode of communication is considered much greater than that of offering it and having it fail to meet expectations. The task group recognized that facilitated communication is not effective for everyone who has a severe speech disability, therefore it is not recommending that the method be mandated. Rather, the proposal recommends that agencies include facilitated communication in their arrays of services and that it be provided within the existing processes of individualized planning for eligible persons. The following plan is proposed for improving the consistency of application of facilitated communication across the Commonwealth, for addressing the concerns about the use of facilitated communication, and for improving access to information about facilitated communication: 1. The Department of Rehabilitative Services (DRS), Department of Mental Health, Mental Retardation and Substance Abuse Services (DMHMRSAS), and the Department of Education (DOE) should recognize facilitated communication as an augmentative communication method and should direct resources toward its use. Individual agency guidelines should be developed as necessary. Each agency that serves or provides funding for services for persons with severe disabilities which limit speech should expand its methodologies/services array to include facilitated communication for persons who may benefit from it. Each agency should develop policies and procedures for making facilitated communication training and services available to its clientele through individual education, treatment, or services plans and within due process provisions. Each agency should address the need for in-service training of personnel and programmatic technical assistance around the provision of facilitated communication training and services. 2. The DRS, DMHMRSAS, and DOE should collaborate to provide access to facilitated communication by persons who may benefit from it. In order to provide continuity of care and appropriate transitioning of services from one setting to another, agencies which have responsibility to provide services for mutual clients should collaborate as necessary to make facilitated communication training and services available for persons who can benefit in as many service and non-service settings as needed. Interagency agreements may be appropriate to promote cooperative planning and services coordination that will maximize all available resources, including facilitated communication, for mutual clients. 3. The General Assembly should appropriate funds to support interagency training, research, and information dissemination. It is proposed that the General Assembly allocate funds of $100,000 for development and implementation of an interagency demonstration project which would provide training, .in-service education, and research which crosses agency and constituency boundaries. A portion of these funds would also enable existing information and referral programs to gather and disseminate information about facilitated communication (Recommendation 6). The demonstration project would support the development of cross agency/cross discipline teams in each region of the state which could provide training and technical assistance to personnel in state facilities, community habilitation, rehabilitation and vocational programs, educational programs, and residential settings. A statewide cadre of trainers would maintain and expand training to program personnel, families, and other persons in communities throughout Virginia. The research to be supported would involve program evaluation of the use of facilitated communication in a variety of settings in which the model training is to be provided to determine the efficacy of the training and in-service education programs in terms of increases in utilization of facilitated communication in service settings. 4. The DRS, DMHMRSAS, and DOE should convene an appropriate interagency group to investigate issues that may arise surrounding program placement and eligibility for specific services for individuals as a result of their use of facilitated communication. Interagency guidelines should be developed as appropriate. An interagency body should be designated to determine and document problems that may arise concerning individuals' eligibility for specific programs, .services, and funding sources which may become problematic when improved ability to communicate might suggest a change in functional status. Guidelines will be necessary for how use of facilitated communication shall influence the assessment of an individual's functional status. 5. The DRS, DMHMRSAS, and DOE should work with the State Council on Higher Education to support the inclusion or information and training about facilitated communication in college curricula designed for persons in appropriate human service and special education areas. Facilitated communication, as a mode of augmentative communication for persons with severe disabilities which limit speech, should be included in the treatment/service repertoire of relevant professionals and paraprofessionals who serve these individuals. Personnel preparation programs in Virginia should appropriately incorporate information about facilitated communication and training in its use. 6. The Secretaries of Health and Human Resources and Education should direct that information about facilitated communication be made available through the existing information and referral, technical assistance, and advocacy programs and systems. Persons with severe disabilities which limit speech, and their families, need information and referral on how to and access facilitated communication training and services. In some cases, they may also need advocacy assistance in getting facilitated communication training or services included in individual education, treatment, or service plans. Programs frequently need personnel training and technical assistance to make facilitated communication training and services available to clientele who can benefit. |
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