LITERACY AND DEVELOPMENTAL DISABILITIES

by Alan Kurtz

One of the biggest obstacles to the acceptance of facilitated communication is the pervasive belief that persons with severe disabilities are incapable of learning to read. This belief often leaders to children with severe disabilities often receiving little or no reading instruction. In addition, they may be placed in programs where they have little exposure or access to written materials. A child's subsequent failure to read may confirm the suspicion that literacy instruction is pointless.

The advent of the use of facilitated communication has forced us to rethink our views on literacy instruction for persons with developmental disabilities. Ironically, misconceptions about facilitated communication have contributed to some individuals not receiving the literacy instruction they need to realize the full benefit of facilitated communication training. Crossley (1993) criticizes the myth that all persons who do not speak have mysteriously acquired sophisticated, previously undetected literacy skills. Viewing literacy as an all or none phenomenon, some potential FC users are precluded from participation in FC or other literacy instruction programs because they fail to demonstrate pre-existing literacy skills. Other FC users do not receive the instruction they desperately require to augment their existing skills.

Increasingly, literacy research challenges the assumption that persons with developmental disabilities will not benefit from literacy instruction, Koppenhaver, Coleman, Kalman . & Yoder (1 991, p. 36) state: "the notions that children are too physically, too cognitively, or too communicatively disabled to benefit from experiences with written language are not supported by current emergent literacy research." Erickson and Koppenhaver (1993) demonstrated that even children with severe developmental disabilities can benefit from literacy instruction.

The focus on teaching more "functional" skills often results in the neglect of reading Instruction. Literacy, however, is a critical skill for persons with developmental disabilities. Koppenhaver and Erickson (1994) list four justifications for teaching persons with developmental disabilities to read:

• Adults who are literate will have a greater variety of vocational options available to them.
• Individuals with disabilities who are literate, especially those who are non-speaking, are better able to interact in face-to-face encounters.
• Literate individuals with disabilities are more likely to be accepted by their non-disabled peers.
• Literacy competence is associated with higher expectations and expanded opportunities for individuals with disabilities.

EMERGENT LITERACY

Gaining knowledge about printed material is a process that begins almost at birth and involves a number of activities traditionally not associated with learning to read (Koppenhaver, Coleman, Kalman, & Yoder, 1991). Learning to read, speak, and listen are skills that develop concurrently. (Koppenhaver, Coleman, Kalman, & Yoder, 1991). Exposure to and interaction with written materials should occur as an integral part of a child's language development. Exposure to written material should not wait until a child has mastered certain pre-literacy skills. Literacy skills develop through active engagement with the world. Literacy instruction must include methods for individuals to respond and react to printed material even at a very young age. Learning about reading involves not just learning about the forms of written language; it means learning about its functions and use as well (Coleman, Koppenhaver & Yoder, 1991).

Coleman, Koppenhaver, & Yoder (1991) describe the forms of written language learned about by children with emerging literacy. These include conventions of print such as book handling skills and a left to right orientation, phonological awareness or an understanding that words are constructed from phonemic segments, letter naming or writing, the relationship between print and speech, and grammar.

Schieffelin & Cochran-Smith (1984) describe some of the functions of print that preschoolers learn. They include acquiring knowledge, memory support, entering a fantasy world, self-expression, entertainment, problem solving, maintaining relationships, dealing with emotions, and conveying instructions, Children with emerging literacy also learn about the rules for interacting with print. These include the idea that books are for reading and not manipulating, books control the topic, pictures represent things, pictures are for naming, pictures represent events, and that books represent a fictional world where events occur outside real time (Coleman, Koppenhaver & Yoder, 1991; Snow & Nino, 1986).

FACTORS CONTRIBUTING TO EMERGING LITERACY AND READING IN INDIVIDUALS WITH DISABILITIES

Children learn about print through exposure to print in the environment, exposure to models of people using printed materials, and most importantly by being given the opportunity to interact with printed materials (Coleman, Koppenhaver & Yoder, 1991; Koppenhaver, Coleman, Kalman, &Yoder, 1991). An important way children learn about the form function and use of print is by answering questions about information in books (Coleman, Koppenhaver & Yoder, 1991).

A number of factors have been identified as being associated with the development of literacy skills in children with disabilities:

• Growing up in a print rich environment (Koppenhaver Coleman, Kalman, & Yoder, 1991).
• Being read to aloud especially when the person can see the text as it is being read (Koppenhaver, Evans, & Yoder, 1991).
• Free access to printed materials and ability to choose materials (Koppenhaver, Evans , & Yoder,1991).
• Opportunities to interact with others around written materials (Koppenhaver, Evans, & Yoder, 1991).
• Exposure to models of persons using printed materials. (Koppenhaver, Coleman, Kalman,&Yoder, 1991)

Koppenhaver and Erickson (1994) summarize the three critical environmental components of emergent literacy as ACCESS, INTERACTION, and MODELS. Koppenhaver, Coleman, Kalman, & Yoder (1991, p. 41-42) provide a number of useful suggestions for activities parents and professionals can use to encourage emergent literacy. Following are some of their ideas:

PARENTS:

• opening, reading, and responding to mail as the child observes, and helping the child hold a pencil and answer some letters" (scribbling is an emergent literacy skill);
• Using recipes with the child to bake a cake or cookies";
• making out a shopping list with the child and then pointing out names of items or signs and labels in the store;
• "reading labels of cereal boxes, juice bottles, or canned foods to a child while preparing the meal or feeding the child";
• "pointing out and reading road signs or billboards [not in Maine of course] to the child while riding in a car';
• "watching shows like "Sesame Street" with the child and reinforcing written language activities"
• making sure children have opportunity to observe functional and recreational uses of print such as looking up programs in TV Guide or reading the newspaper. Parents might think aloud or explain to the child what they are doing while engaging these activities';
• "reading storybooks to children, relating story events in the stories to the child's own experiences. This activity requires particular conscious attention to the fact that the child with DD has relatively less linguistic and world experience";

PROFESSIONALS:

• using thematic experiences such as a storybook reading with related art, drama, and cooking activities to help the child understand and integrate concepts;
• "providing opportunities for children with DD to interact with nondisabled peers, especially during story reading, so that they may have models for asking questions, providing answers, commenting, and story retelling";
• "creating and using interactive storyboards' with or without voice output so that children with severe speech impairments will have a way to interact with peers and the teacher during storybook activities";
• repeated readings of familiar stories,
• reading a variety of types of children's literature,
• "providing independent access to and use of storybooks, writing and drawing instruments, and other print related material ... Children should be encouraged to talk about what they have written and drawn";
• "providing print (e.g., labels, ABCs) in the environment within the child's line of vision."

Many of these suggestions will require adaptations so that children with disabilities can interact. Erickson and Koppenhaver (1993) provide a number suggestions for adaptations that can be used to allow persons with severe disabilities to respond. They have found that devices with voice output are particularly useful.

LITERACY INSTRUCTION FOR PERSONS WITH DEVELOPMENTAL DISABILITIES

Most reading instruction provided to persons with developmental disabilities involves drilling in sight words (Erickson & Koppenhaver, 1993). Most sight word instructional programs focus on word identification and little effort is made to ensure that students comprehend the words they read (Browder& Lalli, 1991). Children with disabilities receiving literacy instruction often do not have the opportunity to ask or answer questions about written material. They seldom read or listen to text and they rarely have the opportunity to compose text themselves (Koppenhaver & Yoder, 1993; Erickson & Koppenhaver, 1993) ' In many cases reading instruction for students with developmental disabilities occurs in environments where they do not have the opportunity to observe others' use of printed material. In short, most literacy instruction for persons with disabilities ignores the literature on how to best teach reading and writing.

The best place for children to get literacy instruction is where it regularly occurs. This is usually in a literacy rich classroom, where there are teachers knowledgable in reading instruction and peer models. Erickson and Koppenhaver (1993) take pride in their success in with literacy instruction in a special education class but recognize the limitations of segregated instruction:

"in the segregated classroom program we developed and continue to study success was due to the program's resemblance to goodclassroom instruction. There is nothing 'special' in special education, and we had no magical solutions. The children were simply given the tools necessary to do what their nondisabled peers do daily with more widely accessible tools and less adaptation. In an integrated setting, with the kinds of supportive tools we provided, children with severe disabilities could not only participate more directly in thrown literacy learning but, more important, receive their literacy instruction from teachers who are trained in reading and writing methods."

Inclusion, by itself, is not sufficient to ensure that a child with a developmental disability will be given the exposure and instruction necessary for him or her to learn to read. Regardless of whether reading instruction takes place in a regular classroom or in a classroom resembling a regular classroom, children with disabilities must be given the same opportunities to access and interact with printed materials that other children are given.

LITERACY INSTRUCTION FOR ADULTS WITH DEVELOPMENTAL DISABILITIES

In teaching reading skills to adults with developmental disabilities we sometimes need to start from scratch because many have never been exposed to academic instruction of any kind. Others may have limited sight word vocabularies that they have learned through drilled instruction. Thus, they can identify single isolated words but they have difficulty reading those words within text or in using them to compose text. Some may have demonstrated a prodigious ability to identify written words at an early age often without instruction (hyperlexia) but do not demonstrate good reading comprehension skills. (One can only guess at how comprehension scores of those with hyperlexia might be affected if they had the same opportunities as others to respond to the words they read and to interact with others around print.) Of course, facilitated communication has shown us that some individuals have literacy skills that we have previously been unable to detect.

David Koppenhaver and Karen Erickson (1994) recently conducted a workshop entitled 'Literacy Strategies and Materials for Adolescents and Young Adults with Developmental Disabilities" in Manchester, New Hampshire. They suggested that many of the strategies used with children can be adapted for adults. Access to printed materials, models of others using written materials, and interaction with printed materials must be incorporated into literacy instruction regardless of a person's age.

Koppenhaver and Erickson (1994) provided a number of suggestions for creating a print rich environment. These included scripting activities, using written schedules, pairing print with symbols in communication systems, using books and magazines as a leisure activity (reading aloud and answering questions about them), books on tape, television with close captioning, and music with written lyrics that can be read while listening to a song.

To help older emergent readers and writers make the transition to conventional literacy, Koppenhaver and Erickson (1994, p. 7) suggest that they "engage in activities similar to those that young emergent and writers engage in." These include

• 'multiple, interactive readings of the same book, text, etc....';
• writing speech and otherwise conveying meaning through writing and drawing' (They also recommend using word prediction and speech output software for adults who are becoming more conventional in use of written words.);
• practice with letter-sound relationships and phonemes" (in contrast to the traditional focus on sight word instruction);
• "exposure to a lot of environmental print";
• 'books and other materials adapted to enable independent use".

Keep in mind that activities should be similar in form but not identical to the activities used with children. The materials should be age appropriate. Reading materials and computer software should be sought out that contains information relevant to adults. Literacy programs for adults should also allow individuals to use printed materials functionally and in an age appropriate way.

Koppenhaver and Erickson (1994) provided a great deal of other useful information. Unfortunately, it was too much to begin to describe here.

FOR MORE INFORMATION:

The Center for Community Inclusion and Disability Studies, Maine's UAP, has many of the articles cited in this article. For a list of resources and prices, contact:
Jen Rice
Center for Community Inclusion and Disability Studies
Maine's UAP
5717 Corbett Hall, Room 203
University of Maine
Orono, Maine 04469-5717

The Center for Literacy and Disability Studies at the University of North Carolina at Chapel Hill has the most complete library of articles and resources available on literacy instructions for persons with disabilities. A list of their resources and a price list is available at The Center for Community Inclusion and Disability Studies. Specific articles may be obtained by writing me at:
Center for Community Inclusion and Disability Studies
Maine's UAP
5717 Corbett Hall, Room 203
University of Maine
Orono, Maine, 04469-5717

REFERENCES

Browder D.M., and Lalli, J. S. (1991). Review of research on sight word instruction. Research in Developmental Disabilities, 12, 203-228.

Coleman, P.P., Koppenhaver, D.A., & Yoder, D.E. (1991). Emerging literacy activities for preschool augmentative communicators. Unpublished manuscript.

Crossley, R. (1993) Literacy and facilitated communication training. Facilitated Communication Digest, 1(2), pp. 12-13.

Erickson, K. & Koppenhaver, D. (1993). Developing a literacy program for children with severe disabilities. Manuscript submitted for publication to The Reading Teacher.

Koppehnaver, D. Coleman, P., Kalman, S., & Yoder, D. (1991). The implications of emergent literacy research for children with developmental disabilities. American Journal of Speech and Language Pathology. 1, 38-44.

Koppenhaver, D. & Erickson, K. (1 994) Literacy strategies and materials for adolescents and young adults with developmental disabilities. Workshop sponsored by New Hampshire Department of Education and Institute on disability/UAP, University of New Hampshire, in Manchester, NH, October 27-28, 1994.

Koppehhaver, D.A. Evans. D.A. & Yoder, D.E. (I 99 I). Childhood reading and writing experiences of literate adults with severe speech and physical impairments. Augmentative and Alternative Communcation, 7,20-33.

Snow, C., & Ninio, A. 91986). The contracts of literacy: What children learn from leaming to read books, In W. Teale & E. Sulzby (Eds.), Emergent literacy.- Writing and reading (pp. 117-138). Norwood, NJ: Ablex.

The purpose of Facilitated Communication In Maine is to promote the appropriate use of facilitated communication through education, technical assistance, and support to people with disabilities, parents, educators, speech and language pathologists support providers, and other interested individuals. The project provides up-to-date information on current best practices, introductory and advanced workshops on the technique, resources regarding theoretical and practical components of facilitated communication and ongoing support to a network of resource persons who provide local education and support to other facilitators.

In complying with the letter and spirit of applicable laws and in pursuing its own goals of pluralism, the University of Maine shall not discriminate on the grounds of race, color, religion, sex, sexual orientation, national origin or citizen status, age, disability, or veterans status in employment education, and all other areas of the University. The University provides reasonable accommodations to qualified individuals with disabilities upon request. This publication is available on audiotape and upon request this material will be made available in other alternative formats to accommodate the needs of individuals with disabilities.

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