Guidelines for Meeting the Communication Needs of Persons With Severe Disabilities

History

In 1984, the Council of Language, Speech, and Hearing Consultants in State Education Agencies initiated efforts to develop national guidelines for developing and implementing educational programs to meet the needs of children and youth with severe communication disabilities. These efforts culminated in a national symposium, Children and Youth with Severe Handicaps: Effective Communication, that was jointly sponsored by the U.S. Department of Education's Office of Special Education Programs, (OSEP) and the Technical Assistance Development System (TADS) of Chapel Hill, North Carolina. This symposium was held in Washington, DC, August 19–21, 1985, and involved professionals from state and local education agencies and universities across the nation—most of whom were directly involved in developing or implementing communication intervention programs for children and youth with severe disabilities.

The product of this symposium (OSEP/TADS, 1985) consisted of 33 “consensus statements” that put forth assumptions and recommendations considered basic to the provision of adequate and appropriate services to meet the communication needs of children with severe disabilities. Some of these consensus statements reiterated philosophical and action statements already stated in Public Law 94–142; others added texture and specifics to actions specified in the law.

The symposium participants recognized the need for interdisciplinary efforts in this overall service domain. One of the symposium recommendations was that the American Speech-Language-Hearing Association (ASHA) and The Association for Persons with Severe Handicaps (TASH) “be asked to coordinate an interagency task force for the preparation and dissemination of statements setting forth the parameters of responsibility for the development and enhancement of functional communication behavior of severely handicapped children and youth” (OSEP/TADS, 1985, p. III. 6). In 1986, then, ASHA and TASH organized the National Joint Committee for the Communication Needs of Persons With Severe Disabilities and issued invitations to other organizations to appoint representatives to the committee.

Return to Top

The National Joint Committee for the Communication Needs of Persons With Severe Disabilities

The purpose of the National Joint Committee for the Communication Needs of Persons With Severe Disabilities is to promote research, demonstration, and educational efforts, including both in-service and preservice education, directed to helping persons with severe disabilities communicate effectively. The interdisciplinary composition of this committee reflects the pervasive importance of communication in all spheres of human functioning and across traditional disciplinary boundaries. The shared commitment to promoting effective communication by persons with severe disabilities thus provides a common ground on which the disciplines represented by the member organizations can unite in their efforts to improve the quality of life of such persons.

Return to Top

Guidelines

The joint committee took as its first task the amplification of the basic assumptions and recommendations reflected in the consensus statements issued by the OSEP/TADS 1985 symposium. The amplification took the form of guidelines for meeting the communication needs of persons with severe disabilities, including persons with severe to profound mental retardation, autism, and other disorders that result in severe socio-communication and cognitive communication impairments. Indeed, the need for such guidelines is underscored by the fact that there are approximately 2 million Americans who are unable to speak or who demonstrate severe communication impairments, but there is a shortage of trained personnel to serve them. Few personnel preparation programs address the communication needs of persons with severe disabilities.

The guidelines presented here have three aspects. First, they state clearly the philosophy that undergirds current efforts to provide intervention services appropriate to the communication needs of persons with severe disabilities. Second, they focus on current best practices in intervention for persons with severe disabilities. Third, they identify the substance and the professional competencies that are necessary for an interdisciplinary team to implement the philosophy and best practices.

What Is Communication?

Communication is any act by which one person gives to or receives from another person information about that person's needs, desires, perceptions, knowledge, or effective states. Communication may be intentional or unintentional, may involve conventional or unconventional signals, may take linguistic or nonlinguistic forms, and may occur through spoken or other modes.

Thus, all persons do communicate in some way; however, the effectiveness and efficiency of this communication vary with a number of individual and environmental factors. Further, some individuals with severe disabilities develop unconventional and socially inappropriate means to communicate, including aggressive acts toward themselves and others. It is the responsibility of all persons who interact with individuals with severe disabilities to recognize the communication acts produced by those individuals and to seek ways to promote the effectiveness of communication by and with those individuals.

Return to Top

A Communication Bill of Rights

All persons, regardless of the extent or severity of their disabilities, have a basic right to affect, through communication, the conditions of their own existence. Beyond this general right, a number of specific communication rights should be ensured in all daily interactions and interventions involving persons who have severe disabilities. These basic communication rights are as follows:

1. The right to request desired objects, actions, events, and persons, and to express personal preferences, or feelings.

2. The right to be offered choices end alternatives.

3. The right to reject or refuse undesired objects, events, or actions, including the right to decline or reject all proffered choices.

4. The right to request, and be given, attention from and interaction with another person.

5. The right to request feedback or information about state, an object, a person, or an event of interest.

6. The right to active treatment and intervention efforts to enable people with severe disabilities to communicate messages in whatever modes and as effectively and efficiently as their specific abilities will allow.

7. The right to have communication acts acknowledged and responded to, even when the intent of these acts cannot be fulfilled by the responder.

8. The right to have access at all times to any needed augmentative and alternative communication devices and other assistive devices, and to have those devices in good working order.

9. The right to environmental contexts, interactions, and opportunities that expect and encourage persons with disabilities to participate as full communication partners with other people, including peers.

10. The right to be informed about the people, things, and events in one's immediate environment.

11. The right to be communicated with in a manner that recognizes and acknowledges the inherent dignity of the person being addressed, including the right to be part of communication exchanges about individuals that are conducted in his or her presence.

12. The right to be communicated with in ways that are meaningful, understandable, and culturally and linguistically appropriate.

Return to Top

Environmental Management

A commitment to the communication rights of persons with severe disabilities requires careful attention to and management of the physical and interpersonal environments in which such persons live, play, and work. Most basically, all such environments must allow, recognize, facilitate, enable, and respond to communication by individuals with disabilities. Further, these environments must reflect an expectation that all persons can and will communicate, regardless of the severity of their mental, physical, or sensory disabilities.

Communication Partners. To guarantee these communication rights for persons with severe disabilities requires the commitment and cooperation of all persons (employers, family members, friends, and staff members) with whom such persons interact daily. All of these individuals must be able to recognize and respond appropriately to the expressive communication produced by the person with severe disabilities with whom they interact, in whatever form that communication is expressed. These communication partners must also be able to provide communication input that is both perceptible and comprehensible to the individual with severe disabilities.

Collaborative Efforts. Further, it is evident that the ultimate achievement of such enabling communication environments will require the knowledge, skills, and experience of parents and of professionals from a variety of disciplines, including speech-language pathology, audiology, education, occupational therapy, physical therapy and other disciplines. It is equally evident that educational and therapeutic efforts directed toward promoting an individual's communication effectiveness must be based on and integrated into that individual's daily communication environments in a culturally sensitive manner and must involve all of that individual's communication partners.

Personnel Preparation. Finally, it is clear that the achievement of this level of interdisciplinary cooperation and collaboration, essential to the development of improved communication environments for persons with severe disabilities, will require major commitments of both preservice and ongoing in-service education resources. Current personnel preparation practices and policies are clearly inadequate to meet this need. At the most basic level, there is a need for more personnel in all disciplines who are educated and committed to deliver services to individuals who have severe disabilities. Beyond this, there is a need to enhance the substance of both preservice and in-service education for such personnel. Professionals in many disciplines today still receive no preparation at all in the area of communication, and others receive instruction that fails to reflect current knowledge and practice regarding the forms and functions of communication, particularly in nonlinguistic modes. It would seem that academic disciplines, educational institutions, and public agencies responsible for personnel policies must all share a commitment to address these needs.

Assessment Practices

Ideal assessment efforts begin with procedures that inventory and describe to what extent individuals are aware of their ability to act intentionally on people in their environments and to have effects on the behavior of those people. Assessment continues with procedures designed to identify the forms of an individual's extant communication repertoire, as well as the social functions (e.g., direct action, direct attention, protest, etc.) of that communication behavior among individuals with severe disabilities (Higginbotham & Yoder, 1982; McLean, Snyder-McLean, Brady, & Etter, 1991; Schuler et al., 1989; Wetherby & Prutting, 1984).

The procedures and contexts needed to assess the communication abilities and needs of persons with severe disabilities must be such that they ensure a comprehensive view of each individual&s extant communication abilities (Romski, Sevcik, Reumann, & Pate, 1988). This means that such descriptions must reflect repeated measures of the full range of an individual's performance across various areas of his or her educational, leisure, living, and working environments. Environmental assessments should be conducted in situations where individuals have a specific need or obligation to communicate. Thus, such descriptions should reflect all of an individual's communication forms, including those expressed in nonspoken and nonsymbolic forms and those expressed in socially unacceptable ways, such as destructive and aggressive acts (Carr, 1977; Donnellan, Mirenda, Mesaros, & Fassbender, 1984). These descriptions should also report the respective functions that users apparently intend for these forms to accomplish. This assessment should also include measurement of hearing sensitivity.

Current best practices reflect an awareness that not only persons with severe disabilities, but also their environments, need to be assessed (Karan et al., 1979; Peck, 1989; Yoder & Villarruel, 1988). Environmental assessments are designed to ascertain the degree to which different environments invite, accept, and respond to communication acts by persons with severe disabilities. Such an assessment is necessary because many environments are highly directive and allow little input from persons with severe disabilities. The national trend to establish less restrictive and more normalized environments reflects the awareness that many environments tend to dehumanize persons with severe disabilities by not allowing them to express their desires, interests, and preferences through communication acts.

At a minimum, then, an environmental assessment should

1. identify the partners for communication who are the most crucial in various environments;

2. measure the extent of the opportunities for communication acts typically observed in various environmental contexts over time (e.g., education, leisure, living, and work settings, etc.);

3. compare the opportunities for communication among the different environmental contexts;

4. determine the proportion of communication acts responded to appropriately in each environment;

5. determine the proportion of communication acts responded to inappropriately in various environments;

6. identify the specific communication forms and functions that might be useful or needed in various environments; and

7. identify the persons in those environments who appear to have relatively higher rates of permitting, accepting, and responding to communication acts of an individual with severe disabilities. These highly responsive persons can be most useful in the initial stages of various intervention programs.

In summary, the forms and functions of communication acts that are being used by individuals should be carefully observed before an intervention program is designed. The relative degree to which environments are sensitive and responsive to the needs of individuals to communicate should also be observed by assessing the frequency by which those environments invite, permit, accept, and respond appropriately to such acts. Given these data, professionals and significant others can then proceed to design program objectives both for individuals and the environments in which they learn, live, play, and work (Karan et al., 1979; OSEP/TADS symposium, 1985; Peck, 1989).

Return to Top

Goal-Setting Practices

Setting appropriate and attainable targets for intervention requires consideration of a complex system of variables. First, such practices are bidimensional in that they set goals both for individuals with disabilities and the environmental contexts in which those individuals interact. Intervention is needed to alter environments that do not invite or respond to communication acts. As will be discussed later, environments that encourage communication are needed as contexts for the initial learning of communicative forms and functions. Environmental programming also reflects the awareness that the generalization of newly acquired communication forms and functions to everyday use necessitates that all of an individual's environments require, invite, and reward communication acts.

Second, goal-setting practices must take into consideration the individual's entry communication repertoire. For example, it is often more effective to target a new, higher level of communication form as a means to express a social function that is already present in the individual's repertoire. Thus, an unconventional vocalization that the individual already uses could be augmented by teaching a corresponding iconic gesture (Halle, 1987; Hart, 1985; Siegel-Causey & Guess, 1989). It is the use of such known and meaningful communication functions in social contexts that allows individuals to better comprehend the meaning and function of the new communication form being taught.

Third, goal-setting practices may initially target interaction between persons with disabilities and various communication partners as a means of strengthening interaction and the communicative use of any already existing system, such as natural gestures. In later stages of intervention, these same partners and interactive contexts will be used as contexts for procedures designed to enable the acquisition and use of higher, symbolic communication forms. Even the symbolic forms sought in later stages of intervention might not be speech but, rather, might focus on augmentative and alternative communication (AAC), including various unaided (e.g., manual sign) and aided symbol sets and systems. Aided AAC systems and devices (e.g., communication boards) include those that can be accessed in ways ranging from simple touchplates to computer keyboards (Blackstone, 1986; Musselwhite & St. Louis, 1989). The selection of any one or combination of these options depends on the cognitive and physical status of the individual, as well as the practicality and functionality of different modes in his or her daily social environments (Beukelman, Yorkston, & Dowden, 1985; Musselwhite & St. Louis, 1989; Reichle, York, & Sigafoos, 1991).

Return to Top

Intervention Practices and Procedures

The consistent use of meaningful interactive contexts is the hallmark of current intervention practices (Calculator & Bedrosian, 1988; Halle, 1988; MacDonald, 1985; Musselwhite & St. Louis, 1989; Romski, Sevcik, & Pate, 1988; Siegel-Causey & Guess, 1989; Warren & Rogers-Warren, 1985; Yoder & Villarruel, 1988). Such contexts stress meaningful use of communication signals and provide the occasions for reinforcement of these social acts. These practices reflect the renewed awareness that teaching communication does not mean teaching just communication forms. Rather, communication intervention means teaching communication forms and functions—with the functions discoverable only in the interactive, socialized contexts in which these functions occur and are responded to by other people.

Interventions should take place in real-world, interactional contexts. The use of such teaching contexts contrasts sharply with past practices in which communication forms were trained in isolated environments. The current use of interactive contexts involving other people as responders to communication acts features learning opportunities dispersed over a wide range of meaningful interactions and contexts, rather than trials presented in a training context that is isolated from an individual's daily environment. Research data suggest that the use of truly interactive contexts, in which communication acts actually function to affect the behavior of other people in purposeful interactions, both increases the rate of communication initiations and allows for effective learning of communication forms and functions (Halle, 1987; Hart & Risley, 1980). Teaching communication in these more natural contexts appears more likely to foster the maintenance and generalization of newly learned communicative behavior to all similar contexts in the individual's natural environment.

Return to Top

Service Delivery

When considered together, all of the assessment and intervention practices discussed above have important implications for service delivery practices. Communication intervention must involve significant people and significant contexts across multiple environments. The delivery of intervention services of this scope requires the collaboration and competence of families and of professionals and paraprofessionals from many disciplines. The ideal interdisciplinary delivery model requires that participants share a common perspective on communicative behavior. This shared perspective should include an understanding that communication behaviors are social in that they have effects on other people, and that such behavior can be nonspoken and nonsymbolic in its form (OSEP/TADS symposium, 1985).

An interdisciplinary model also reflects an awareness that interactive contexts that are salient and productive for persons with severe disabilities involve family members and professionals and paraprofessionals from many disciplines. A master intervention program is best formulated and implemented by an interdisciplinary team and involves all of the contexts controlled and managed by individual members of that team. Depending on an individual's age and disability, the exact composition of the interdisciplinary team will vary. However, the team must include a speech-language pathologist and family member or guardian. Communication teaching takes place within the context of all life activities.

Clearly, each member of the interdisciplinary team, including family members, must be recognized as having specific and crucial contributions to make to the design of the communication intervention program. The specific knowledge and competencies that are required within an interdisciplinary team that is focused on the communication needs of persons with severe disabilities are described below. As the wide range of knowledge and competencies needed by these teams is carefully examined, the need for interdisciplinary input should become abundantly clear.

Return to Top

Summary

In summary, the current best practices in facilitation and enhancement of communication among persons with severe disabilities reflect six major tenets:

1. communication is social behavior;

2. effective communicative acts can be produced in a variety of modes;

3. appropriate communicative functions are those that are useful in enabling individuals with disabilities to participate productively in interactions with other people;

4. effective intervention must also include efforts to modify the physical and social elements of environments in ways that ensure that these environments will invite, accept, and respond to the communication acts of persons with severe disabilities;

5. effective intervention must fully utilize the naturally occurring interactive contexts (e.g., educational, living, leisure, and work) that are experienced by persons with severe disabilities; and

6. service delivery must involve family members or guardians and professional and paraprofessional personnel.

These six tenets have resulted in assessment, intervention, and service delivery models that offer maximum responsiveness to the need to establish communication repertoires that will allow persons with severe disabilities to function effectively in least restrictive environments—in productive interactions with others.