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Fall 2003 Table of Contents
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Communication Systems to Last a Lifetime: Implications and Strategies for Adolescents and Young Adults

By Maurice Belote, Project Coordinator, California Deaf-Blind Services

Reprinted from reSources, Summer 2002, Volume 10, Number 13 with permission from California Deaf-Blind Services, http://www.sfsu.edu/~cadbs/

Abstract: This article is about preparing individuals who are deafblind to have a seamless transition from special education to adult services. It discusses the importance of leaving the school system with an "effective, functional, dynamic, and accessible communication system."

Key Words: deafblind, transition, communication

Meeting the needs of individuals who are preparing to leave educational systems and enter adult services and adult life is a challenge. Among the many considerations that are unique to this population, it is vital that students leave school with communication systems that are effective, functional, dynamic, and accessible. Access to a formal communication system is not just an IEP goal or a task to consider once the appropriate funding sources have been identified. It is, rather, a basic human right, and allows individuals to lead fulfilling, enriching lives that include the sharing of feelings, emotions, deep desires, concerns about the future, and the delights of the past.

It is first necessary to define two terms so the intent of the following strategies is clear. The term "formal communication system" refers to a system that is documented, used consistently among various people and locations, and follows the individual wherever he or she goes—from program to program and into adult life. It is a system that is, in most cases, unique to one person only, and designed to effectively address a specific individual's expressive and receptive communication needs. The term transition age refers not only to an individual's chronological age—typically 14 to 21—but also to the nature of that individual's school program, which probably by this age includes community based instruction, life skills, work experience, and job training.

The following are strategies or suggestions that might assist educational teams and families as they consider how best to meet the needs of their students, clients, sons, and daughters.

Create the best communication system possible while the individual who is deaf-blind is still receiving special education services

In many cases, the level of support that individuals who are deaf-blind receive while in school far exceeds the level of support they will receive once they leave school and enter the adult services system. Chances are the adult service system will not provide communication specialists at the same frequency level and with the same skill level as provided by the school system.

The result is that, for most individuals, the communication system they have when they leave school is the system they will use for many, many years. The communication system will probably not be significantly expanded or improved after the individual is graduated from school.

Admitting this, however, is not the same as acceptance; we can and must strive to build adult services that are as individualized as possible. We also know of exceptions, e.g., supported employment programs that have access to augmentative and alternative communication specialists who will adapt communication systems to match specific inter-personal and environmental needs. Family members may also be in the position to assist in expanding and making improvements to the communication system. In addition, the individual who is deaf-blind will always be expanding or changing the system—adding new signs, new photos, new drawings, etc. But this does not guarantee that these changes or additions will be documented or formalized into the system without the assistance of a knowledgeable service provider.

The goal is to create dynamic systems that allow for growth and change, while at the same time be aware that the systems may remain static for long periods of time.

Document the individual's communication system

It is critical that an individual's communication system be documented. Too often, students who are deaf-blind are forced to learn new communication methods every time staff and/or program changes occur because their communication system doesn't follow them from program to program, or because new staff isn't adequately trained in using the existing systems.

There are many components to an individualized communication system that need to be documented. For example, if an individual uses sign language—expressively and/or receptively—it is important for the people who serve that individual to know exactly which signs are used. For most individuals, the sign systems that develop throughout a person's school career are a mix of ASL signs, SEE signs, and home signs. Home signs are signs created specifically for that person. Sometimes home signs are needed because a sign for something the individual wants to communicate about doesn't exist. In other instances, home signs are used because at the exact moment a particular sign was needed, the teacher or family member didn't know the correct sign, so one was invented "on the spot" and the individual who is deaf-blind never forgot the made up sign.

If an individual's system includes objects, the exact objects will need to be documented so that if objects are lost in transition from one program to another, replacement objects can be gathered quickly. Documentation of objects will need to include either photographs or very clear drawings of each object so that someone unfamiliar with the system will have a clear idea of each object.

Even spoken language should be documented if the individual has enough residual hearing to take advantage of spoken language, especially in cases where the individual may only recognize or respond to a limited number of spoken words. For example, a person who is deaf-blind may understand the question "Do you need the bathroom?" because the question has been asked the same way—with those same words—for many years. If the person then enters an adult work program and the question is posed "Who needs the lavatory?" or a staff member shouts "This is your chance for a restroom break," these phrases may not have the same level of meaning to the individual who is deaf-blind. Some service providers may consider their clients as falling into two distinct groups—clients who are deaf and therefore unable to respond to speech, or clients who are hearing and therefore able to respond to all speech. It's not that service providers are uncaring or unwilling to understand—it is just that they are probably not experts in sensory loss and need to be oriented to the person's specific hearing loss, i.e., frequencies they can and cannot hear, environmental considerations, and specific words and phrases the person is most likely to hear and understand.

There are many ways to document communication systems. A personal communication dictionary can be created that describes through text and drawings the various components of a specific individual's system. Videotape is also an effective method, especially when documenting home signs or modified signs. For instance, if the individual who is deaf-blind signs bathroom—not with a shaking "T"—but with a closed fist at ear level, it may be very helpful for future service providers to be able to see this on video in case a written description alone isn't clear enough to fully prepare the service provider to recognize and respond to this modified sign.

Remember that an effective communication system often includes many modes, and a person's expressive modes and receptive modes may not be the same

When children are young, their communication systems are not usually too complex. The team decides, for instance, that the child will use an object system, later to be paired with sign language, and then Mayer-Johnson symbols, and so on. As the child ages, the communication system often becomes more complex and more complicated to use.

By the time the individual who is deaf-blind has reached transition age, their communication system may utilize many components. For some individuals who are deaf-blind and have other disabilities including cognitive impairments, a typical communication system might include signs, objects, photographs, line drawings, touch cues, speech, and print or Braille. It is all of these components, when documented and formalized, that make up a person's unique communication system.

In addition, an individual's expressive communication mode(s) may not be the same as their receptive mode(s). For example, after many years of exposure to sign language, signs may be an effective receptive system for an individual who is deaf-blind, i.e., the individual understands when others sign to her or him, but that same individual may have little success in forming signs to use expressively. She or he may, however, be a competent user of a voice output system that will meet expressive communication needs. In this case, it probably doesn't provide much information to simply describe the person who is deaf-blind as "a signer" or as "a voice output board user," as these descriptions cannot fully describe the complexities of the person's receptive and expressive abilities.

Develop a communication system that meets everyone's needs

When developing or modifying a specific communication system, it is important to remember that the system has to meet everyone's needs, and not just the needs of the service providers and family members. The system needs to include components that allow the individual who is deaf-blind to communicate what she or he wants to communicate about. The system should also consider what same age peers are interested in, and include language on subjects that will interest peers so that peers can use it effectively as an "ice-breaker" to start conversations.

The only way to be certain that a communication system meets everyone's needs is to develop the system using a team approach, and employ this same approach when significant modifications and adaptations are made to the system. The team would include the individual who is deaf-blind, family members, service providers, and peers. The inclusion of peers on the team will ensure that current topics, interests, slang and colloquial expressions are included.

Remember that the system must be accessible to its user at all times

The communication system for an individual who is deaf-blind must always be accessible. This is true regardless of the individual's age but becomes a greater challenge for a student of transition age. Meeting this challenge is intensified because students at the transition level are frequently off-campus for much of their school day. They may be grocery shopping at a local supermarket, participating in job training programs at community work sites, and/or accessing community recreational resources such as libraries, health clubs, and teen centers. In addition, each of these activities may require public transportation, which means time spent waiting at bus stops and time on buses and subways, locations that do not necessarily facilitate ease of communicative interactions.

The communication system designed for a specific individual must take into account the issue of accessibility in all locations in which it will be used; it would be unfair to the system's user to deny the availability of the system in one or more locations. This doesn't mean the entire system must be portable. For instance, if the individual uses a picture schedule, he or she may have a master calendar at home and/or school, and may have a smaller accordion-style schedule to take off-campus that covers shorter periods of time. If an individual uses sign language effectively at school and home but doesn't live in an area where community members are likely to also know sign language, a back-up system could be developed, e.g., communication cards with printed words and line drawings, that allow the individual to be as successful a communicator in public places as she or he is at home and school.

Don't let yourself be overwhelmed if your time with the individual is limited

For teachers of transition age students, it can be overwhelming to welcome a new student into the program who is 18 or 19 years old and who may have had little or no prior access to a formal communication system. It may seem like an insurmountable task to undertake—to compress into two to three years what other students receive throughout their entire school careers. This same scenario may also be true for foster care providers, or anyone else who serves teenagers and young adults.

It is important to remember, however, that anything and everything that is accomplished in the area of communication will be tremendously valuable to the individual who is deaf-blind throughout their adulthood. For example:

Transitioning from school to adult life is a scary time for students and families. Families report that they are asked to be at the highest levels of involvement and energy, and at the same time they are exhausted after years of navigating systems and meeting their child's needs. For students, they are asked to be at their absolute best—this is the time they are probably being evaluated and considered for inclusion into work and supported living programs—at the same time they are upset and nervous over the significant changes occurring in their lives. The more we can all do to prepare individuals who are deaf-blind to have a seamless transition from special education to adult services has value beyond measure.

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Last Revision: September 1, 2010