Intervention With Special Populations

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Communication Intervention With Individuals With Degenerative Conditions

Communication intervention services may be especially important for individuals who have degenerative disorders (also known as progressive disorders). As the disorder progresses, the communication needs of the individual will change. In addition to diminishing health, degenerative disorders are often associated with the loss of vision, hearing, or motor function. Any of these changes will have a marked effect on the individual's communication needs, requiring responsive communication intervention.

For example, an individual who once communicated in sign language may no longer be able to form the hand shapes of the signs. In later stages of the disease/disorder, he/she may be able to express only the most basic needs through gestures to his/her own body. Thus, the team must plan compensatory skills to replace skills expected to be lost due to the progressive disorder. This is very challenging because educational and rehabilitation teams are oriented to improving skills. In the case of individuals with progressive disorders, the goals will be to maintain as many skills as possible while teaching new skills that are needed in response to the individual's changing condition.

In addition to the potential need for new means of communication, the individual with a progressive disorder is likely to experience new environments (such as clinics and hospitals) and new communication partners (such as new medical personnel or caregivers). Thus, communication intervention is important to prepare the individual to participate in these new environments and to prepare communication partners to interact with the individual.

Decisions specific to intervention methodologies and desired outcomes should be made on an individual basis.

Bottom Line: All persons are deserving of the opportunity to communicate as effectively as possible throughout their lives. The provision of communication intervention services will yield benefits for the individual with a progressive disorder and for his or her family.

Working With Individuals Who Are Deafblind

Few generalizations can be made about deafblindness, because the term deafblind refers to combined hearing and vision losses, and there are many possible combinations of these sensory losses. Some key ideas may be useful to consider:

  • Most students who are deafblind have some functional hearing and/or vision.
  • Students who are deafblind require highly individualized programs.
  • Students who are deafblind communicate in a variety of ways.
  • Many students who are deafblind will require small-group and 1:1 instruction. This is because losses in both distance senses greatly impact one's ability to access and benefit from large-group instruction.

Collaborative teamwork is essential to treat these students. The visual, auditory, and tactile needs; learning styles; and physical capabilities of students with deafblindness differ enormously. No single team member can be expected to address all of these factors adequately when planning and implementing instruction. The sharing of expertise from each discipline aids each team member in delivering services.

Appropriate services will address the following aspects of communication: form (such as gestures, object representations, and verbalization); function; content; and context. The aspect of context includes considerations about the physical environment (setting it up and watching for the child's responses), the child's individual characteristics (such as being outgoing), communication partners (and their need for training), well-defined activities and routines, and the process of communication (how the child initiates, sustains, and terminates conversations expressed across forms; Bruce, 2002).

Communication services may include teaching the student to use object representations, sign language, or finger spelling, as well as amplification systems. Students who are adventitiously deafblind (i.e., born with hearing and sight, but experience impairment later in life) may need support to transition from one form of expressive communication to another. For example, someone who used visual sign language may need to learn tactile sign as vision loss progresses.

Services will be provided to match the individual's level of communication. The Communication Matrix (Rowland, 2013) is available for free use by professionals or parents (www.communicationmatrix.org). The Communication Matrix can support teams to identify the levels of communication expressed by the child as a basis for communication programming.

The field of deafblindness often applies child-guided methodology grounded in the work of Jan van Dijk (most recently known as the van Dijk curricular approach) and expanded by others. (See MacFarland, 1995; Nelson, van Dijk, McDonnell, & Thompson, 2002). This grounding is essential to providing sensitive and effective services to children who are congenitally deafblind.

In recent years, the definition of literacy has evolved to include prelinguistic learning. This new view of literacy includes everyone and means that what we once thought of as communication interventions—including lessons in choice making and those involving the daily schedule—are also literacy lessons.

Bottom Line: Each state has a federally funded deafblind project. Parents may contact the appropriate teacher in their district (preferably a deafblind specialist, teacher consultant of the visually impaired, or teacher of the deaf/hard of hearing) or directly contact their state deafblind project for more information about how to register the child. State deafblind projects provide services to benefit the child who is deafblind and the family.

References

  • Bruce, S. (2002). Impact of a communication intervention model on teachers' practice with children who are congenitally deaf-blind. Journal of Visual Impairment & Blindness, 96(3), 154–168.
  • MacFarland, S. Z. C. (1995). Teaching strategies of the van Dijk curricular approach. Journal of Visual Impairment & Blindness, 89, 222–228.
  • Nelson, C., van Dijk, J., McDonnell, A. P., & Thompson, K. (2002). A framework for understanding young children with severe multiple disabilities: The van DIjk approach to assessment. Research & Practice for Persons with Severe Disabilities, 27, 97–111.
  • Rowland, C. (2013). The communication matrix. Retrieved 4/21/14 from www.communicationmatrix.org.

More Information

Services to Individuals With Autism Spectrum Disorder

Communication-based assessment for persons with severe disabilities, including autism spectrum disorder (ASD), always should be conducted with several key principles in mind.

  • Assessment must generate reliable and representative findings. Simply stated, the process of assessment should be ongoing and yield data that accurately describe both communication abilities and needs.
  • Assessment must be tri-focused. Siegel-Causey and colleagues promote communication-based assessment that includes not only the individual requiring services, but also his or her communication partners and environments (Siegel-Causey & Bashinski, 1997; Siegel-Causey & Wetherby, 1993). This perspective recognizes the expansive nature of communication as it relates to all of us, including our clients with developmental disabilities.
  • Assessment should be family focused. The family knows—and has specific hopes and dreams for—the member with severe disabilities and ASD. Needless to say, family input is critical. 
  • Assessment must be dynamic. Dynamic assessments yield findings that describe not only a person's functioning level but also how he or she learns best. This relates directly to a final principle: Assessment should inform treatment. Communication-based assessment for individuals with severe disabilities and ASD must lead to meaningful treatments that target socially valid outcomes.

Generally, practitioners use observational methods and structured procedures to assess the communication abilities and needs of persons with severe disabilities and ASD. Observations can provide invaluable information about individuals with disabilities as well as their partners and environments. Observations may be most useful when examiners generate guiding questions before the observation period. Unfortunately, observations are limited to what happens during a given session or what appears in a written record.

Structured procedures include communication sampling, informant assessment, and standardized assessment. Structured communication sampling is a tool for eliciting emergent communication (both nonsymbolic and emergent symbolic). During structured sampling, the individual with disabilities is provided with tempting communication opportunities that make responses near obligatory. An example might be eating in front of an individual without offering food. There is a rich literature base supporting structured sampling with persons with severe disabilities and ASD. 

Informant assessment typically involves questioning friends and family members about an assessment candidate's communication-related abilities, needs, and expectations. Informant assessment can be conducted in an interview format and frequently uses established tests designed for infants and toddlers (e.g., the Receptive-Expressive Emergent Language Scale-Third Edition [REEL-3]; Bzoch, League, & Brown, 2003). A caveat of informant-based procedures is the limited reliability of the informant. That is, informants often over- or underrepresent the communication abilities of persons with severe disabilities and ASD.

Finally, standardized tools should be considered when assessing emergent communication abilities. These tools apply (or allow for) elicitation procedures that generate data useful for decision making specific to treatment eligibility and direction. Instruments that have been designed specifically for persons with disabilities are useful for individuals with less conventional communication abilities.

Just as with observations, there are limitations to structured assessment procedures, such as the unnaturalness of tasks/contexts and the unfamiliarity of examiners..

Bottom Line: Individuals with disabilities, including autism, are entitled to a communication assessment regardless of their functioning level. This principle is central to the Individuals with Disabilities Education Act 2004 and a cornerstone of best practice as described by the National Joint Committee for the Communication Needs of Persons with Severe Disabilities.

References

  • Bzoch, K. R., League, R., & Brown, V. Receptive-Expressive Emergent Language Test-Third Edition (REEL-3). (2003). Austin, TX: PRO-ED.
  • Siegel-Causey, E., & Bashinski, S. M. (1997). Enhancing initial communication and responsiveness of learners with multiple disabilities: A tri-focus framework for partners. Focus on Autism and Other Developmental Disabilities, 12, 105–120.
  • Siegel-Causey, E., & Wetherby, A. (1993). Nonsymbolic communication. In M. E. Snell (Ed.), Instruction of students with severe disabilities (4th ed., pp. 290–318). New York: Macmillan.