NH Guidelines for the Use of Facilitated Communication

GUIDELINES FOR THE USE OF FACILITATED COMMUNICATION
State of New Hampshire
Department of Health and Human Services
Division of Developmental Services

October, 1999

These guidelines were developed in collaboration with New Hampshire's Facilitated Communication Task Force. Task Force representation includes: ATECH Services, NHAAC, ASSETT, UNH Institute on Disability, UNH Department of Communication Disorders, Nashua School District, NH Autism Society, NH Family Support, consumers, and legal advocates.

NH's Facilitated Communication Practice Guidelines
Summary

The following practices are recommended as safeguards in order to ensure that facilitated communication (FC) is used responsibly so as to enable communicators to produce messages that express thoughts and feelings.

A team approach should be taken to ensure, to the extent possible, that all the significant people in the communicator's life have access to facilitated communication training and are supportive of and committed to the FC process.
Written informed consent should be obtained before FC training begins. Informed consent means that the potential communicator as well as the parent/legal guardian has been given full information about the FC process and the advantages and drawbacks associated with FC.
A total communication approach should utilize a structured plan of communication that uses FC as well as other appropriate augmentative and alternative communication strategies; especially the methods with which the communicator is developing independent communication skills.
The use of facilitation requires that all facilitators receive intensive training and follow-up supervision from an experienced facilitation trainer.
The desired goal of FC is to have the communicator communicate independently, without the physical support, and this goal should be stated at the first session. A trained facilitator will fade back on the amount of physical support she/he provides as the user's skill level increases.
Communicators should receive facilitation from multiple facilitators, as success often depends on the frequency of use across all environments.
Central to the FC process is providing continuous feedback and monitoring, which helps ensure that the message as understood by the facilitator is what the communicator intends. Such feedback and monitoring should provide encouragement to the communicator, help build skills that may contribute to the communicator's independence and ensure that facilitation techniques are consistent across all facilitators who are supporting the individual.
Evaluation and documentation should be a part of the FC process form the beginning. A portfolio should be developed, with the communicator's permission, which gathers data establishing documented changes and progress over a period of time. The team, including the parents/guardian, should review the portfolio regularly.

Facilitated Communication Best Practices Guidelines

Introduction

Facilitated communication (FC) is an alternative means of communication that may be used by individuals who have limited or no speech and who cannot point reliably. FC refers to the interactive and interdependent exchange in which one person (the "facilitator") provides physical, emotional and communicative support to another person (the "communicator"), assisting him/her in pointing to pictures, objects, printed letters or words, or operating a keyboard. Physical support is provided at the communicator's shoulder, arm, wrist, or hand. The goal is to reduce the amount of support over time, called "fading", as the communicator moves toward independence. Such supports may include: assistance in isolating the index finger, stabilizing the arm to overcome tremor, backward resistance on the arm to slow the pace of pointing or to overcome impulsiveness; or a touch on the forearm, elbow or shoulder to help the communicator initiate typing. Emotional support is provided to encourage self-confidence and self-expression. Such support includes: presuming competence; developing and maintaining a trusting relationship; providing the communicator with choices; respecting the communicator's right to say "no"; and mutual respect. Communication support is also provided to: clarify and confirm the communicator's message content, assist in the development of skills related to written language, and offer verbal feedback when the communicator experiences difficulty with word or message formulation.
These practice guidelines have been developed with an understanding and respect for the need for freedom of expression, protection from harm, professional and ethical responsibility, as well as the premise that all individuals with communication disabilities should be given the full opportunity to use augmentative and alternative communication. They have been developed because of the controversial nature of FC and are recommended as a model for individuals, families and service providers in New Hampshire to ensure that FC is used with integrity. These guidelines were written with reference to established guidelines, policies and publications of other states and/or organizations with experience in FC, including Vermont, Michigan and Pennsylvania; the Facilitated Communication Institute at Syracuse University; the Institute on Disability/University of New Hampshire; draft guidelines by the American Speech-Language-Hearing Association; and from other experts in FC (see Reference List). Information from all parts of the United States was gathered through a survey process, list serve participation, and professional referrals.

Definitions

Facilitated Communication (FC) -- refers to the interactive and interdependent exchange in which a facilitator supports a communicator. The facilitator provides both physical and emotional support as the person with the communication disability tries to point at pictures or letters in order to communicate.
Communicator -- the individual with an expressive language disability who has something to say bu needs help to do so.
Facilitator -- the individual providing physical, emotional and communication support to help a communicator point to the pictures or letters in order to communicate.
Team Members -- the communicator and all significant support people with whom the communicator is involved (can include professionals, family, friends and others.)
Facilitated Communication Training -- is training designed by experienced professionals for all types of facilitators and helps develop the skills to: 1) teach communicators to use communication aids with their hands; 2) promote the communicator's progress toward independence; and 3) carry out a proper evaluation of the FC process.

Best Practices

Facilitated Communication is currently considered one option in the continuum of augmentative and alternative (AAC) practices to be used in the training of people with communication disabilities to express themselves. These guidelines and policies focus on competent implementation that is essential to achieving meaningful outcomes for all involved in the facilitation process. As is the case with other methods of communication, the use of FC does not guarantee the accuracy of statements made by communicators, and it may happen that messages produced with FC contain incorrect information or even false allegations of mistreatment or abuse. Experienced facilitators are usually able to help the communicator clarify his/her message.

A. Team Approach

    It is critical that people involved with a potential communicator be supportive of and committed to the FC user and the FC process. A team consists of all significant people; family members, guardians, friends, support staff, and professionals such as Speech-Language Pathologists or Occupational Therapists. The team should also include individuals who know the communicator well and are expected to be involved in providing support to the communicator over a sustained period of time. Professional members who are trained and experienced in the FC process should act as a counsel and support to nonprofessional facilitators. The FC user should have ongoing input into the FC process.
    To assist team members in making decisions about the use of FC, the team should receive basic information on what FC is and how it works. As part of this process, people with knowledge and experience in FC training should be part of the team to answer questions, provide new information, and help ensure that FC is correctly implemented.
    When recommending FC for individuals, professionals should include details about the skills and support that would allow the individual to use FC effectively. Such recommendations should include the following:

levels of physical support to be provided;
types of strategies to be used by the facilitator to support communication;
types of contextual support to be provided (emotional support, materials, activities, etc.)
type of technology to be used in conjunction with they physical supports.

Demonstration of literacy, typing, spelling and authorship by the communicator should not be considered prerequisites to introducing facilitated communication but rather skills to be learned.

B. Informed Consent

Since FC remains a controversial practice, written consent should be obtained from the prospective communicator and his/her legal guardian. Before signing such a form, families, guardians, and potential communicators should be provided information about the FC process and the advantages and drawbacks associated with FC. (A model consent form can be found in Appendix A below.)

C. Total Communication Approach

FC should be considered as part of an overall structured plan of communication that may be used with other AAC strategies, such as sign language, natural gestures, or electronic devices. Individuals who are experiencing any degree of success with other AAC approaches should continue to have access and receive training with these methods, especially if they are developing independent communication skills.

D. Facilitator Training and Competency

    The complexities involved in good facilitation require that facilitators receive thorough training that combines classroom learning with coaching from an experienced facilitator. It is important that organizations have a process in place to provide training to new facilitators. Such training should focus on developing facilitator skills in promoting the communicator's progress toward independence and in the evaluation of the FC process. Central to good FC training is facilitator attention to providing continuous feedback and monitoring for the FC user. This monitoring involves the incorporation of ongoing evaluation and documentation of the FC process
    Ideally, as facilitators are receiving training, the experienced trainer/facilitator will be simultaneously working with the communication to begin the process of discovering support levels, position, appropriate aids and devices, and any other significant information which will ease the transfer to others on the team as soon as possible.
    The New Hampshire Department of Health and Human Services does not endorse the use of FC by people who have not received the necessary training. Training needs to be thorough and ongoing. It is strongly advised that new facilitators work under the supervision of an experienced facilitator.

E. Supporting Multiple Facilitators

In order for skills and confidence to develop and to provide the communicator with the opportunity to make choices, it is desirable that the team of support people be extensive enough to provide communication access throughout the day and across all environments. Access to facilitation partners should be available throughout the day, as success depends on the frequency with which an individual is able to use FC. FC partners could include parents, siblings, peers, friends, support staff, teachers, co-workers, and professionals who spend time with the person and want FC training. It is recommended that additional facilitators join the team one at a time.

F. The Goal of Independence

A goal of FC is to have the communicator communicate independently, without physical support. This goal should be discussed at the first session. At the same time, it needs to be made clear to the communicator and team members that although not all communicators will reach independence, they still need the opportunity to communicate, as well as encouragement to improve their skills.
Working towards independence means fading back on the physical support as the communicator increases her/his skill level. Input from the occupational and physical therapist regarding hand functioning and motor patterns should be considered in this process. It also means teaching the communicator to monitor her/his own communication more, with less prompting and direction from the facilitator. The communicator should be involved in developing the plan for learning to communicate without assistance and moving toward independence at a pace with which she/he feels comfortable. As with all educational training, the FC plan should focus on skill development presented in increments that ensure success for the individual.

G. Evaluation and Documentation

    Like any relatively new technique, FC should be evaluated regularly through a variety of procedures. Documentation serves as a way of providing information about an individual's communication progress, tracking implementation of the FC plan, and recording the facilitators' strategies and techniques when supporting the individual. Communicators and their facilitators should view the process of evaluation and documentation as an integral part of the learning process, as with any therapy technique that is implemented.
    With the cooperation of the communicator, a communication portfolio should be established which documents over time instances of valid communication (for example, information conveyed by the communicator that the facilitator did not know [i.e. message passing]) and demonstrates progress in self-expression and/or independence. Communication samples with and without physical support should be collected in the portfolio. Other strategies and supports used by each facilitator should be recorded and reviewed for consistency, success or failure.
    Data for the portfolio should be collected regularly. Depending on the needs of the communicator, team members should meet on a regular basis to review the portfolio and the communicator's progress. Judgments about the method's effectiveness should not be based on a single assessment session but instead on longitudinal and cross-situational comparison of performance. Documenting the communicator's success with different facilitators and different amounts of physical support is a useful way to monitor the FC process; testing can be helpful too.

H. Sensitive Messages

When a communicator conveys sensitive or controversial messages with FC, the communicator should, if possible, be provided alternative opportunities and means for expressing that message content. In addition, contextual and behavioral evidence should be examined in connection with such messages. The assistance of an experienced outside facilitator may help clarify the messages.

Conclusion

It is important to remember that Facilitated Communication is a support offered to help individuals be more effective in their communication efforts. It evolves from a perspective that assumes all people have a desire, a need, a right, and the competence to communicate, just as they have a right to choose a communication approach that works best for them.
These guidelines were designed to be consistent with the current recommended best practices and policies already established in other states and/or organizations, and to help establish a valid and dependable means of communication for individuals with communication disabilities. The use of FC is to be considered as any other related service support and protected by current related service regulations and guidelines.

References

American Speech-Language Hearing Association (1999). Guidelines for Speech-Language Pathologists Using Facilitated Communication (Draft.) Not published.
Biklen, D. (1996). Facts About Facilitated Communication. Pub: FC Institute, Syracuse University, Syracuse NY. Available: http://soeweb.syr.edu/thefci/fcfacts.htm
Crossley, R. (1993). Flying High on Paper Wings. Reprinted: DEAL Communication Centre. Available: http://home.vicnet.net.au/~dealccinc/Flying.htm
Facilitated Communication Institute (1997). Guidelines: Facilitated Communication and the Individual. Pub: FC Institute, Syracuse University, Syracuse NY. Available: http://soeweb.syr.edu/thefci/5-3fci.htm
Institute on Disability/UAP, University of New Hampshire (1993). Position Statement on the use of Facilitated Communication. Not published.
Michigan Facilitated Communication Policy Group (1996). Model Policy on Facilitated Communication. Pub: Michigan Protection and Advocacy Service, Lansing, MI. Available: http://soeweb.syr.edu/thefci/guide-mi.htm
Sub-Committee on Facilitated Communication (1995). Implementation of Best Practice in Facilitated Communication Training... The Pennsylvania Perspective. Available: http://soeweb.syr.edu/thefci/guide-pa.htm
State of Vermont (1994). Facilitated Communication Training: Practice Guidelines. Facilitated Communication Digest Vol. 2(3). Pub: FC Institute, Syracuse University, Syracuse NY. Available: http://soeweb.syr.edu/thefci/2-3ver.htm

Appendix A -- Consent Form

______________________________________________ (Name of Person with Communication Disability) and ______________________________________________ (Name of Guardian) state the following:

1. We have received detailed explanations about Facilitated Communication (FC), an alternative communication method that is sometimes used by individuals who have limited or no ability to speak. In particular, we understand that

FC is a method of communication, not a cure for any disability.
FC, to be effective, requires that the communicator as well as the facilitators working with the communicator have received thorough training and ample opportunity to practice.
FC may be misused, intentionally or inadvertently, by a facilitator to influence the message that is produced by the communicator and has therefore been criticized by some as not being a valid means of communication.
Therefore, FC should always be practiced and taught in accordance with the Guidelines for the Use of Facilitated Communication issued by the Department of Health and Human Services Division of Developmental Services of the State of New Hampshire, of which we have received a copy.
Given the risk of misunderstandings and misuse of language, in case a sensitive or controversial message is produced, such message should be clarified and interpreted with the help of an experienced facilitator before any action is taken.

2.___________________________________________ (name of Person with Communication Disability) has indicated his/her understanding of the forgoing statement and, when asked, has expressed his/her consent to being introduced to FC, and _________________________________________ (Name of Guardian) hereby agrees to the use of FC.

Dated: ______________________________________

(Signature of Guardian)

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GUIDELINES FOR THE USE OF FACILITATED COMMUNICATION State of New Hampshire Department of Health and Human Services Division of Developmental Services

NH's Facilitated Communication Practice Guidelines Summary