Currents in Literacy

Literacy Learning Abilities of Children with Developmental Disabilities: What Do We Know?

By Susan E. Gurry and Anne S. Larkin

Being literate is a critical life skill, particularly while living in a world with new technological developments appearing daily. Volumes of magazines and newspapers, voice mail, e-mail, the Internet, and personal computers in general have increased productivity and the pace at which our lives are lived. The increasingly fast pace of life demands that we read faster, write faster, and engage in many ways with print (both on paper and on a computer screen) often for many of our waking hours. In schools, children not only have to master a set curriculum, but they also have to "learn how to learn" to be best prepared for an ever-changing future.

Inclusion of students with developmental disabilities in schools and communities is also a current practical reality, as are increasing school and home-based efforts to help all children become literate (Marvin and Mirenda, 1993; Fountas and Pinnell, 1996). Given such realities, how can we best educate students with developmental disabilities who are included in typical schools and classrooms today? What do we know about teaching them reading and writing skills?

The answer to the above is: we don't yet know all the answers. In fact, until recently, little attention has been paid in the research and professional special education literature to teaching literacy skills to children with developmental disabilities. In general, special needs teachers in self-contained classes have been working with reading and writing as a functional academic activity for the past few decades. Minimal competency was expected; hence, minimal competency was attained. Given recent advances in supporting children in general education to read and write via whole language, print-rich, interactive, and supported environments (Cunningham, P. and Allington, R., 1994; Cunningham, P. and Cunningham, J., 1992; Fountas and Pinnell, 1996; Pinnell and Fountas, 1998; Vaughn, Bos, and Schumm, 1997), how can we best access and adapt this information to enable children with developmental disabilities to become literate community members? It is our belief as teachers, teacher educators, researchers, and professionals in the area of developmental disabilities that children with developmental disabilities can benefit from similar interventions.

In this article, we will refer to research, both published and unpublished, and emerging practices in literacy interventions for children with developmental disabilities. We will define developmental disabilities and offer several definitions of literacy. We will describe some of the teaching practices which we have seen as successful and offer suggestions for educators based on our research and on the work of our colleagues.

What is literacy?

For many decades, literacy was viewed as a cognitive process, learned through direct and sequenced instruction in school settings, and taught after certain "readiness skills" were acquired by children. Today, literacy is best described as a social, psychological, linguistic, and interactive process in which written and oral language are best learned from birth, in purposeful and interactive contexts, with many opportunities to observe and interact with others who read and write (Koppenhaver, n.d.).

A more basic definition of literacy is that it is the ability to read and write. A more complex definition describes literacy as "participation in the socially embedded, purposeful activities that occur between members of a linguistic community (speakers, readers, and writers) and the texts they create and use" (Stokes, 1998). Becoming literate and expanding literacy skills are critical for life-long success in almost all endeavors. This is particularly true, we maintain, for those members of our society for whom literacy has been either an unattainable or minimally attainable goal.

What are developmental disabilities?

The Developmental Disabilities Services and Facilities Construction Act of 1970 (P.L. 91-517) introduced the concept of "developmental disability," and stated that the onset of a developmental disability must be during the developmental period, defined as between birth and twenty-two years of age. Additional federal legislation further defined developmental disability as "a severe, chronic disability of a person...which is attributable to a mental or physical impairment or combination of mental and physical impairments; is manifested before the person attains age twenty-two; is likely to continue indefinitely; results in substantial functional limitation in three of more areas of major life activity..." (Accardo, Whitman, Laszewski, Haake, and Morrow, 1996). Developmental disabilities include mental retardation, autism, cerebral palsy, Down Syndrome, spina bifida, and many other developmental disorders as described in Accardo et al, (1996).

Children with developmental disabilities need early intervention services and continued school- and community-based special education throughout their school years. Many, but not all, require supported employment and supported living situations as adults. Developmental disabilities are also considered to be low-incidence disabilities, in contrast to the higher-incidence specific learning disabilities. Approximately nine percent of pre-school and school-age children have developmental disabilities, and conservative estimates establish the total number of persons with developmental disabilities in the United States to be approximately five to eight million people (Koppenhaver, n.d.). Individuals with developmental disabilities are thought to have moderate to severe cognitive impairment, although the accuracy of testing for IQ with children who cannot talk, point, or have seriously idiosyncratic behaviors (such as seen in the autistic spectrum) is seriously in doubt. Our experience, and the experiences of many parents and teachers we know, indicate that students with the label of "developmentally disabled" can achieve far beyond what others might expect.

What are the connections linking literacy learning to students with developmental disabilities?

Much has been written about how to teach typical children to read and write. Research and practice in emergent literacy has led to a conceptualization of literacy learning as a continuous process that begins at birth and continues through oral language, early experiences with print, picture books, music, writing, and drawing. (Koppenhaver, Coleman, Kalman, and Yoder, 1991). Of the many books, articles, and research reports describing the teaching of reading and writing for typically developing, non-disabled children, few discuss including children with developmental disabilities in that instruction.

There are potentially many logical reasons for the scarcity of this information. Children with developmental disabilities often require intensive medical support throughout their early years of life; they also require more time and instruction to learn basic skills such as walking, standing, dressing, and playing with other children. Parents of these young children are often so busy with basic care needs, medical interventions and doctors' visits, and reacting to and learning about their child's areas of disability and ability that they are not left with the energy to read, color, scribble, or paint with their pre-schooler. Many parents of children with developmental disabilities did not predict that their children would learn to read at all (Marvin and Mirenda, 1993). Rarely do any of the experts with whom they are involved expect them to become involved in the process of literacy learning.

In an informal survey of five parents of eight- to eleven-year-old children with significant developmental disabilities in a New Hampshire town in 1992, we asked if they read bedtime stories to their children, provided them with crayons and paper, or helped them write grocery or other lists in either play or real situations. Four out of the five parents did none of these things (Goodell, 1992). In fact, some parents were incredulous that the question was asked; their lives with their children with disabilities left them with little time or energy to engage their child in such activities. We are not faulting any parents here; in fact, we are commending them for the many ways they have faced significant challenges in caring for their child(ren) at home, and in the community. Typically, there is little time for much else. As an example, if, as a parent, your six-year-old has been diagnosed with mental retardation, a seizure disorder, demonstrates self-stimulatory behaviors, lacks eye contact, has never reacted to the books in his room or your attempts to read to him, and sleeps less than six hours a night, the chances are high that you would consider reading a low-priority activity. As Koppenhaver stated:

When we interview parents and professionals, we find that many of them are understandably preoccupied with health and medical issues....When we observe in homes, clinics, classrooms and the community, we find that this preoccupation leads to life experiences often lacking the rich variety of print experiences available to nondisabled children. Children with developmental disabilities often do not own books, cannot hold a pencil, lack the speech or communication abilities to request print or to interact with others during literacy experiences, and often are considered too severely impaired to learn to read and write. (Koppenhaver, n.d.)

Those parents and professionals who desired to engage their child in emergent literacy activities found few, if any, guidelines. For many years, students who attended schools or classrooms for children with developmental disabilities had their first systematic exposure to print when they entered school, not at home or in pre-school. Since many were not able to interact with print in meaningful ways, the notion of a "functional curriculum" which would directly teach basic skills was the norm. Direct teaching of sight words, discrimination trials of familiar and functional words, functional academics, and published programs such as DISTAR and EDMARK were generally recommended (Snell, 1993; Oelwein, 1995; Ford, Davern, Schnorr, Black, and Dempsey, 1989; Accardo et al, 1996).

The authors undertook a brief review of the literature from two respected journals in developmental disabilities: Mental Retardation, a quarterly publication of the American Association on Mental Retardation, and Education and Training in Mental Retardation and Developmental Disabilities, a quarterly published by the Division on Mental Retardation and Developmental Disabilities of the Council for Exceptional Children. While obviously not a scientific review, we learned that out of a total of eighteen journal editions, containing a total of at least 125 articles published within the past three years, there was not a single article which reported research, policy, or practice in teaching reading or literacy skills to students with the label mental retardation or developmental disabilities.

There are a few studies published in other sources which deserve mention. Investigating a classwide peer tutoring model in an inclusion classroom with three eight to nine-year-old boys with autism, researchers found that the boys improved reading comprehension as measured by their correct responses to questions (Kamps, Barbetta, Leonard, and Delquadri, 1994). Another study investigated a child-centered, literature-based model with a fourteen-year-old student with severe mental retardation and hyperlexia; post-testing with informal reading inventories showed improvement in reading comprehension and story grammar elements. In 1997, Erickson, Koppenhaver, Yoder, and Nance published an article describing their successful attempts to enable a child with multiple physical and speech disabilities to access print, answer questions in class, and make progress in class.

In summary, the majority of the available research on reading instruction for students with low incidence disabilities has previously, and for many years, emphasized teaching sight words, phonics, and functional reading, with exceptions such as those cited above. It is clear that individuals with low-incidence disabilities have a great deal of difficulty in learning to read. It is time to reexamine previous assumptions about developmental disabilities and develop research paradigms and instructional methods which will shed light on the most successful practices.

Recent Developments

The publication of an intriguing article in the American Journal of Speech and Language Pathology in 1991 by David Koppenhaver and several colleagues at the Carolina Literacy Center caught our attention. (Dr. Koppenhaver and several others, asking similar questions to ours, established the first and only National Center for Literacy and Disability Studies in North Carolina in 1990.) In their article, the authors reviewed the literature in several vital areas: developmental disabilities, AAC (Augmentative and Alternative Communication), the notion of "reading readiness," and emergent literacy for children without disabilities. They then discussed the implications of the literature in the above areas for students with developmental disabilities. Their findings were similar to ours: children with DD experience literacy in ways that are vastly different from the experiences of their nondisabled peers and siblings. These authors were asking a question very similar to ours: if students with DD were given access to print in all its forms from an early age, were assisted in literacy input (being read to or reading silently, listening to a book on tape, using adaptive computers) and literacy output (through computers, dedicated communication devices, and/or pointing to letters/words with assistance), would they have a solid foundation upon which to build readers and writers with more than minimal literacy skills?

Over the past six years, we have been able to collaborate with Koppenhaver and his colleagues at the Center. We have participated in and presented at five International Symposia on Literacy and Disabilities in North Carolina. Koppenhaver and his colleagues have set the stage for a source of information and research on access to and engagement in literacy practices for students with various developmental disabilities. The following two case studies were conducted locally and give a glimpse into some of our more recent work, with results similar to those mentioned above.

Local Case Studies

In 1991, Susan Gurry began a case study of an eight-year-old boy, Tom, with a diagnosis of a seizure disorder and significant mental retardation, in collaboration with his mother Mary, a student at Lesley University. At the beginning of the study, Tom's language skills appeared to cluster at around the 2.0 to the 2.5 year range; he spoke in three to four word sentences with a limited vocabulary, and he perseverated on several words. He used no prepositional phrases in his speech, and did not attempt to draw, scribble, or write his name. As part of a course assignment and in cooperation with his self-contained classroom teacher, Mary attempted to teach Tom to recognize his name, common words in his environment, and letters of the alphabet using discrimination trials as described in the literature (Snell, 1993). Over a semester, with school support, Tom experienced no success. Mary proposed further investigation of the same child, working with a "whole language" approach.

During this second study, which took place over the summer with no school-based interventions, Mary worked with Tom daily, engaging him in many age-appropriate activities such as reading predictable books, creating their own books, scribbling, and playing activities such as kickball, basketball, and bike riding. They cooked together when possible, using recipes as print. They made their own big books based on familiar experiences. During these planned activities, Mary verbalized with many repetitions Tom's surroundings, his actions, her actions, and community signs. She ignored inappropriate behavior, redirecting his attention back to the activity when needed.

Prior to beginning this phase of the case study, formal and informal pre-tests were attempted, but Tom did not respond correctly. He ignored questions, did not point to pictures or words, stared straight ahead, and engaged in some hand-flapping. These behaviors led the tester to conclude that he did not understand the questions and did not possess the skills being tested. This conclusion is typical when testing children with significant delays, given their often inconsistent behavioral responses.

Despite the short duration of this case study (one summer), Tom began to exhibit emergent reading and writing skills. He memorized three predictable books, as well as a homemade book called "Where's Mike?" based on a favorite book of Tom's, "Where's Spot?" (Mike was the name of Tom's gerbil.) Tom began scribbling with a pencil and paper while verbalizing, "This says Tom," and occasionally presented his mother with scribbled words as his accomplishments. When reading out loud at bedtime, Mary sometimes hesitated before reading the next word in a familiar text. Although he appeared not to be listening, Tom often provided the correct word. He turned the pages at the appropriate time, and many times he sat still and listened to stories without self-stimulating behaviors. He demonstrated beginning book knowledge by holding a familiar book correctly and turning to page one to indicate "begin here."

During the literacy and outdoor activities sessions, Tom's behavior was remarkably different from his pre-test behavior. Often when reading (being read to), he looked at the books and turned the pages; he eventually verbally completed some sentences. When Mary deliberately misread a word in a familiar text, even if Tom was standing across the room and NOT making eye contact, he supplied the correct word. This appeared to indicate that he was, indeed, listening, even though he was self-stimulating (flapping his hands). Tom was adding prepositional phrases to his vocabulary at the completion of this case study. He had begun to make marks with a pencil on paper, often saying, "This says Tom" as the summer drew to a close. This scribbling/writing behavior continued through the fall.

What can we learn from this brief case study? We learned that Tom did not learn to read familiar words or letters through the initial discrimination trials, but that he did increase in several areas using a more whole-language, immersion intervention: through word knowledge, book knowledge, use of print, scribbling, and invented spelling with rather shaky letters on paper. We observed that he was making attempts to write his name, and that he listened to text even during the times he was self-stimulating or moving about his room. Finally, this showed us that both formal and informal testing did not reveal any of his current or developing skills. Instead, immersion in typical daily activities with language experiences, plus immersion in print, children's predictable readers, and opportunities to scribble and attempt to form letters with several media did increase his attempts to and interest in doing so. These were, and still are, very exciting emerging results (Goodell and Gurry, 1992).

We later collaborated on a slightly different case study with a doctoral student, Jeanne, who was the lead teacher in a developmental and inclusive preschool. The doctoral candidate worked in her classroom with a student we call "Hillary." Hillary, a little older than four, was nonverbal, probably dyspraxic and dysarthric, with some characteristics of a child with Pervasive Developmental Disorder. Hillary had few means to communicate her needs, interests, and wants; she also did not play with other children, and did not seem to be able to engage in pretend play, although she enjoyed gross motor activities. Using a modification of the Facilitated Communication approach, in which a letter board and physical support are provided to a student, Jeanne would help Hillary choose an activity by supporting her pointing to the letters "blocks" or "house corner" (or any center set up around the classroom). Other children saw this letter board interaction occurring, and they, too, began to use the letter boards to point to letters, both for themselves as an informal activity and also while helping Hillary when she stood, uncertain, near a letter board. There were examples of Hillary "talking to herself" using a letter board. By the end of this four month case study, Hillary was making choices to go to preferred play areas by walking to a spelling board placed in several locations in the room, bringing an adult with her to help. She would then engage in brief periods of pretend play in the chosen center. In "beauty salon," she pretended to answer the phone, jotted down some scribbles on a piece of paper (i.e., making a client's appointment), and vocalizing sounds which mimicked hello and good-bye. She had clearly made developmental progress in symbolic play, emerging literacy skills, eye contact, and socialization skills. She also began to make the connection between letters which communicated words, and the print in books by pointing to letters. For a young child with a possible diagnosis of a serious developmental disability, Hillary made good progress by being in an inclusive, emergent literacy environment with the spelling boards as adaptations for her.

As we were learning about immersion in print for students with developmental disabilities through our own work in Massachusetts, Karen Erickson from the Center for Literacy and Disability Studies completed her dissertation entitled "Literacy and Inclusion for a Student with Severe Speech and Physical Impairment." One of her significant findings was that the mere physical presence of children with severe speech and physical disabilities in an inclusive classroom did not automatically provide them with equal access to print and active classroom participation. Her case study student was an eleven-year-old boy diagnosed with spastic cerebral palsy who had limited use of his hands, mild to moderate visual impairments, non-verbal, and probably mild to moderate cognitive challenges. Erickson introduced an augmentative communication device and adaptations which give him access to the many literacy and numeracy activities in fourth grade. Using his Dynavox communication device, Patrik used initial letters to indicate that he wanted to talk about something, used invented spelling to do his writing, and requested assistance from the students and adults around him to help him communicate. He became an active learner and contributor in the class (Erickson, 1995). As Erickson stated, it has been typical that adults in the teaching and special education fields have assumed that it was the "nature of the disabilities of the student" which were the causal factors in literacy learning difficulties experienced by individuals with severe disabilities (Erickson, 1995; Erickson and Koppenhauer, 1998). These are a few of the studies which demonstrate that, with assistance and persistence, students with significant and multiple challenges can begin to evidence emergent literacy skills.

Suggestions for Educators and Practitioners

In our preliminary findings from our own research over the last two years in first grade and kindergarten classrooms, as well as the studies described above, we believe that there are some valuable lessons to be shared, particularly in the five areas detailed below.

Classrooms. The classrooms that we found the most conducive to learning for all students, including those with DD, were structured on the Literacy Collaborative (formerly the Early Literacy Learning Initiative) model. In these classrooms, all students were clear about the expectations of each activity area, and there was time allowed to transition. Teachers made the expectations clear verbally, in print, and in symbols, (photos, line drawings, Mayer-Johnson symbols) and via repetition and gentle reminders. How the individual student with DD utilized the classroom was also a key factor in the flow of time and activity. Some students made good use of the classroom space, while others were a little less "organized."

Students. The students with developmental disabilities who were succeeding were active members of the classroom community. Their behaviors were sometimes distracting, but not disruptive, due perhaps to the modeling of the teachers. All differences were accepted and respected, again because of teacher modeling and persistence. In Patrik's situation, an augmentative device was the key; in Hillary's classroom, a spelling board with a "yes" and "no" response and letters was the beginning of her participation in the class.

Personnel. We could share many thoughts about how personnel were utilized in the classrooms. Where possible, equal time was given to the students with developmental disabilities (by the teacher, specialist, assistant, or another student). No child appeared to "slip through the cracks." The kinds of interactions between student/students; student/teacher; student/assistant were revealing: some were intermittent and others were continuous.

The use of the special education specialist was also an important aspect of our observations. "Pull-in" instruction versus "pull-out" services, collaboration and team teaching of specialists and classroom teachers, and coordinated planning for curriculum were all observed elements. For inclusion and literacy involvement to be successful, they require more than one adult in the classroom throughout the school day. Additionally, the educators working with the children need ongoing training and were eager for support.

Literacy/academic issues. All environments we observed were print rich. Books, schedules, calendars, content corners, themed curricula, writing workshop, free reading, reading buddies, reading aloud, listening to taped books, oral presentations, art activities, music, and technology were present and utilized. Hi-tech and low-tech adaptations such as taped books, assistance in turning the pages of a book, and/or computerized devices were also important factors in a child's success in a classroom. Making certain that the child with the developmental disability had access to and was using the print was an important element, and the teachers had to carefully make this access happen.

Belief in literacy learning of all children. In our observed classrooms, it was clearly stated that although the teachers did not know how far their challenged students would go with reading, they did, in fact, expect that they were capable of and would learn to read. This strong belief is an important precursor to any literacy or other classroom instruction.

Finally, some subjective observations seem to be important at this time. In our research, all students with developmental disabilities had access to all literacy activities, and had some specialist support within the classroom. We did observe, however, qualitative differences in how our target students were engaged, the extent and length of their engagement independently, the types and frequency of curricular adaptations, and whatever specific accommodations were made for the child(ren) with identified developmental disabilities. The differences in engaged time, however, could also be due to the length of the attention span of the individual child, a factor which we, as researchers, were not able to control.

Conclusions

We believe there is room for much hope and optimism for both tried and untried methods. Since there are now so many inclusionary school programs with wonderful classrooms that are literacy-rich, and striving to achieve "Literacy for All," we -- both special and general educators alike -- must make sure that "all" truly means all the children in a classroom, including those with developmental disabilities. It is a critical time for collaboration between reading specialists, whole language teachers, adaptive technology specialists, and special educators as we explore the many dimensions of literacy for young people with developmental disabilities. There is a long road ahead of us, and much will be learned along the journey, particularly if we take the journey together.

References

Accardo, P.; Whitman, B.; Laszlewski, C.; Haake, C., and Morrow, J. (1996). Dictionary of Developmental Disabilities Terminology. Baltimore: Brookes Publishing.

Cunningham, P. and Allington, R. (1994). Classrooms That Work: They Can All Read and Write. New York: HarperCollins.

Cunningham, P. and Cunningham, J. (1992). "Making Words: Enhancing the Invented Spelling-decoding Connection." The Reading Teacher, 46, 106-113.

Erickson, K.A. (1995). Literacy and Inclusion for a Student with Severe Speech and Physical Impairments. Unpublished doctoral dissertation. The University of North Carolina at Chapel Hill.

Erickson, K. A. and Koppenhaver, D. (Sept./Oct., 1998). Using the write "talknology" with Patrik. Teaching Exceptional Children, 31, 58-64.

Erickson, K.A., Koppenhaver, D., Yoder, D., and Nance, J. (1997). "Integrated Communication and Literacy Instruction for a Child with Multiple Disabilities." Focus on Autism and Other Developmental Disabilities, 12, 142-150.

Ford, A., Schnorr, R, Meyer, L., Black, J. and Dempsey, P. (1989). The Syracuse Community-Referenced Curriculum Guide for Students with Moderate and Severe Disabilities. Baltimore: Brookes Publishing.

Fountas, I. and Pinnell, G.S. (1996). Guided Reading: Good First Teaching for All Children. Portsmouth, NH: Heinemann.

Goodell, M. and Gurry, S. (1992). Emerging Literacy and Children with Developmental Disabilities: A Case Study. Unpublished manuscript, Lesley University.

Kamps, D., Barbetta, P., Leonard, B., and Delquadri, J. (1994). "Classwide Peer Tutoring: An Integration Strategy to Improve Reading Skills and Promote Peer Interactions Among Students with Autism and General Education Peers." Journal of Applied Behavior Analysis, 2 (1), 49-61.

Koppenhaver, D. (undated) A Primer on Literacy and Developmental Disabilities. Chapel Hill, NC: Center for Literacy and Disabilities Studies.

Koppenhaver, D., Coleman, P., Kalman, S., and Yoder, D. (1991). "The Implications of Emergent Literacy Research for Children with Developmental Disabilities." American Journal of Speech and Language Pathology, 38-44.

Marvin, C. and Mirenda, P. (1993). "Home Literacy Experiences of Preschoolers Enrolled in Head Start and Special Education Programs." Journal of Early Intervention, 17, (4), 351-367.

Oelwein, P.L. (1995). Teaching Reading to Children with Down Syndrome: A Guide for Parents and Teachers. Bethesda, MD: Woodbine House.

Pinnell, G.S. and Fountas, I. (1998). Word Matters: Teaching Phonics and Spelling in the Reading/Writing Classroom. Portsmouth, NH: Heinemann.

Snell, M. (1993, 4th ed.) Instruction of Students with Severe Disabilities. New York: Merrill.

Vaughn, S; Bos, C., and Schumm, J. (1997). Teaching Mainstreamed, Diverse, and At-risk Students in the General Education Classroom. Boston: Allyn and Bacon.

Susan Gurry, Ed.D. is an Associate Professor in the School of Education at Lesley University and has been a member of the faculty for fifteen years. Dr. Gurry is the Director of the Intensive Special Needs Program at Lesley and taught special education in the public schools for ten years.

Anne Larkin, Ph.D. is a Professor in the School of Education at Lesley University, with a concentration in special education. Dr. Larkin has been a faculty member at Lesley for thirty-two years and has been the Director of the Say Yes to Education Scholarship Program since 1991.