TRAINING AND DEMONSTRATION

A Survey of Speech and Language Pathology Services for Down Syndrome:

State of the Art

Libby Kumin

loyola College

This article summarizes current trends in speech and language paihology services IO individuals wilh Down syndrome. Data was collected through /he use of a qaes- rionnaire mailed to speech and language pathologists who regularly serve clients with Down syndrome. Mosf widely used assessment insrrumenrs, therapy materials, sources of ittformaiion. and need for tttalerials IO be developed are presenred as rhey relale IO services for birrh-3 year olds, 3-5 year olds, school-age-14 year olds, prevocational-18 year olds, and above-age-18 adult services. The discussion ad- dresses spectfic needs for research and needed direcfion for evaluarion and treat- tttenr with rhe Do wtt syttdrotne population.

Down syndrome is the leading cause of mental retardation in the United States. There are at least 250,000 families affected by individuals with Down syndrome in this country, with about 4,000 new births yearly (National Down Syndrome Congress, 1984). Children with Down syndrome are at high risk for speech and language disorders based on cognitive deficits (Blager, 1980), recurrent middle ear infections, fluctuating hearing loss (Balkany, Downs, Jafek, & Krajicek, 1979), and hypotonicity of the musculature (Pue- schel, 1984), which also affects the oral and tongue musculature. Studies have found that verbal language output is usually far below language comprehen- sion (Cornwall, 1974) and that verbal expressive language is the most difficult communication modality for the child with Down syndrome. To help the child learn the symbolic nature of language, specific sign language systems have been used in language therapy, such as American Sign Language, Signed

Address reprint requests to: Libby Kumin, PhD, Dept. of Speech Pathology. LoYola College,

4501 N. Charles Street, Baltimore, MD 21210.

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English (Bornstein, Hamilton, Saulnier, & Roy, 1975), and Amerind (Skelly & Schinsky, 1979). It has also been suggested that children with Down syn- drome might profit from early use of a hearing aid to compensate for inter- mittent or mild hearing loss (Yarter, 1980).

There has been no published report that analyzes the current status of speech and language pathology services to children and adults with Down syndrome and suggests needed directions for assessment and intervention with this population. Until 1984, there was no large-scale attempt to locate speech and language pathologists who regularly serve individuals with Down syndrome.

Kumin (1985) compiled a directory of 390 settings that provide speech and language pathology and audiology services for individuals with Down syn- drome. Trends observed included a greater number of settings providing services to children birth-10 years old, with very few facilities providing speech and language services to adults. More children were being seen in group sessions than in individual sessions, and some children were receiving consultative services rather than direct intervention. The mean number of sessions weekly was 3.32, with a range of 1-9 sessions and a mode of 3 ses- sions. Sessions were most often 30 minutes in length.

The purpose of the current report is to disseminate the results of a survey regarding current methods and materials used in speech and language path- ology treatment of infants, children, and adults with Down syndrome.

METHOD

Questionnaires were mailed to 350 speech and language pathologists in- cluded in the Directory of Speech and Language Pathology and Audiology Services for Individuals with Down Syndrome (Kumin, 1985). One hundred and twelve responses were received from professionals serving various age groups, documenting the assessment instruments and therapy methods and materials currently used. The number of respondents serving each age cate- gory is cited in Table 1.

Data provided on the questionnaires were tabulated, and percentage of use was determined for the various assessment and therapy materials most often cited. Data were analyzed to determine if a concensus existed that cer- tain materials or methods were adequate or inadequate, and a list of needed professional materials was developed. The summarized information is re- ported, based on the age categories of the clients served.

RESULTS

It was determined that the specific materials used and the need for specific materials to be developed varied greatly, depending on the ages of

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the clients served; for example when working with one-year-olds, feeding and oro-motor skills information would be needed, but this would not be a primary concern when working with adolescents. Major results according to age group categories are summarized later. Diagnostic instruments most widely used for each age category are summarized in Table 1. The most fre- quently used intervention materials cited by respondents are reviewed within the body of the results section.

Responses were received from 75 speech and language pathologists serv- ing the birth-3-year-old population. ’ To obtain diagnostic information, the Receptive-Expressive-Emergent Language Scale was the scale most often used by the respondents. For direct assessment, the Sequenced Inven- tory of Communication Development was the most often used instrument, followed by the Zimmerman Preschool Language Scale.

For the birth-3-year-old group, speech and language pathologists re- ported using functional objects, Fisher Price toys, Discovery toys, and Johnson & Johnson toys most often in therapy. Although professionals often agreed on diagnostic instruments used for this age group, there was little consensus on which published therapy materials should be used. The Peabody Early Experiences Kit was cited by 17% of the respondents, and 9% of the respondents cited the Small Wonder Kit. The Hawaii (HELP) program and the Learning Accomplishment Profile (LAP) program were reported as used by 4% of the respondents.

Professionals conveyed the need for speech and language norms for chil- dren with Down syndrome under age 3 to be developed, as well as the need for an in-depth prespeech and a comprehensive speech and language curric- ulum for early intervention programs. They agreed on the need for infor- mation on feeding, sign language, and total communication. The need for parent information was also stressed.

Sixty-seven responses were received from speech and language patholo- gists and audiologists serving the 3-5-year-old population. For assessment, the Peabody Picture Vocabulary Test-Revised (PPVT-R) was most often cited, followed by the Preschool Language Scale. Ten professionals, or 15’?‘0 of the respondents, also cited the need to carefully evaluate a language sample for each client in this age group.

Although speech pathologists begin to use published therapy materials in greater numbers with the 3-5 year olds, functional objects were still reported as the most widely used materials. DLM-Teaching Resources language kits were cited by 25% of the clinicians, and the Peabody Language Development Kit was cited by 15% of the respondents. The Peabody Early Experiences Kit,

‘References for the materials reviewed can be obtained from the author.

TABLE 1. State-of-the-Art Assessment Instruments

Assessment Instrument # Centers Using %

N= 15 centers Age Group: O-3 year olds

REEL 39 52 SICD 32 43 Preschool Lang. Scale I6 21 Early-LAP II I5 Uzigiris & Hunt Scale 10 13 PPVT-R 10 13 Bayley Scales 9 I2 Bangs Birth-3 Scale 9 I2 Environmental Language Inv. 7 9

N = 67 centers Age Group: 3-S year olds

PPVT-R Preschool Language Scale SICD REEL TACL Expressive One Word Picture Vocabulary Test Goldman-Fristoe Artic. CELI TOLD ACLC Boehm Brigance ELI Meeting St. Scale

41 61 33 50 20 30 17 25 16 24 I2 18 IO I5 7 IO 7 IO 6 9 5 1 5 7 4 6 4 6

Age Group: School Age-14 year olds N = 60 responses

PPVT-R TACL II-PA Goldman-Fristoe Artic. TOLD Boehm CELI CELF Expressive One Word Picture Vocabulary Test Bankson Lang. S.T. Token (Children)

33 55 I9 32 I6 26 14 23 14 23 13 22 I2 20 I2 20 I2 20 10 I7 6 10

N= 41 centers Age Group: Prevocational-I8 year olds

PPVT-R CELF TOLD

I6 39 9 22 8 20

(conrinued)

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TABLE 1. (Continued)

Assessment Instrument # Centers Using %

DTLA 7 17 Goldman-Fristoe Artic. 7 17 TOAL 6 15 Expressive I-Wd. Picture Vocab. 6 15 Commun. Assess. for Daily Living 5 12 Fischer-Logeman Artic. 3 7

N=31 Age Group: Adults

CELF PPVT-R Goldman-Fristoe Artic. DTLA TACL ITPA Fullerton TOLD TOAL

II 35 8 26 I 23 6 19 5 16 3 10 3 10 2 6 2 6

Target on Language, Ready-Set-Go- Talk to Me, Fokes Sentence Builder, and the Teacher Organized Training for Acquisition of Language were also cited. Professionals stated their need for assessment tools normed on Down syn- drome populations, assessment tools for children who have severe and pro- found mental retardation, and information on oro-motor skills. The need for the development of a complete in-depth language curriculum was also cited.

Responses from 60 speech and language pathologists working with in- dividuals with Down syndrome, 5-14 years old, were received. The assess- ment instruments most often cited were the PPVT-R, Test for Auditory Comprehension of Language, and Illinois Test of Psycholinguistic Abilities. Twenty-two percent of the respondents suggested evaluating a speech and language sample including evaluation of mean length of utterance and De- velopmental Sentence Scoring.

A wide variety of therapy materials was suggested for this age group, to help remediate specific speech and language problems. For morphology and syntax dysfunction, Teaching Morphology Developmentally, Fokes Sentence Builders, Language Approach to Open Syllables, Syntax I and II were cited. For semantic and pragmatic language disorders, professionals suggested Func- tional Communicative Competence, HELP Book I and II, Language Remedi- ation and Expansion, Clinical Language Intervention Program (CLIP), and Let’s Talk for Children. Mecham Structured Language Program, Lotto games, DLM materials, Pictures Please, and the Sourcebook of Language Learning Activities were also cited. For children who are more severely limited in com-

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munication ability or are nonvocal, sign language systems, Bliss and rebus symbols, communication boards, and other augmentative communication devices are used.

Professionals suggested the need to develop materials that include pic- tures of handicapped children and adults. Assessment and treatment materi- als for pragmatic language skills are also needed, including picture cards and games to help teach language skills needed in the natural environment.

Responses were received from 41 professionals who work with young people with Down syndrome in prevocational programs through age 18. Most settings administered the PPVT-R with the Clinical Evaluation of Lan- guage Function (C&V’) and Test of Language Development (TOLD) ad- ministered in at least 20% of the settings reported.

There was general agreement on the specific therapy materials used for this age group, but the paucity of appropriate materials and the overwhelm- ing need for language materials especially designed for prevocational and adult vocational programs were stressed. Functional Communicative Com- petence and Let’s Talk were cited. Handbook of Exercise for Language Pro- cessing (HELP) Book I and II, Manual of Exercises for Expressive Reason- ing, Language Remediation and Expansion, Shop Talk and Sourcebook of Language Learning Activities were widely used in various settings. Pragmatic language materials, work-related communication materials, and materials that picture adolescents and adults were needed but are not currently available.

Responses were received from 3 1 centers that provide speech and language services to individuals with Down syndrome above age 18. The CELF, PPVT-R and Goldman-Fristoe Articulation Test were the most widely used tests. It was felt that pragmatic language materials and materials depicting handicapped adults need to be developed. Therapy materials cited were HELP-I and II, Language Remediation and Expansion, Survival Signs, Let’s Talk, Fokes Sentence Builder, DLM Photo Library, and Adult Aphasia materials.

For clients using augmentative communication systems, Talking Pic- tures, rebus pictures, Blissymbolics, and The Signed English Dictionary were materials often employed. Materials that professionals felt needed to be developed were tests standardized on adults with Down syndrome and in- formation on neurological changes and language and memory changes in adults with Down syndrome.

DISCUSSION

The data reported provide information on assessment instruments and materials currently used in therapy. They also highlight areas of need in re- search and in practical materials and professional services. It is important, however, to look further and to discuss the implications of the present data. The period during which speech pathologists are working most intensively

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with individuals with Down syndrome appears to be from birth to 5 years of age. Public and private agencies and school systems provide assistance, and materials are available to supplement therapy. There needs to be greater emphasis on parent training, so that parents can provide an intensive home program. There also always needs to be direct involvement of speech and language pathologists, In many settings, the speech and language patholo- gist is providing consultative services up to age 3 (Kumin, 1985), and this could be insufficient for the needs of the Down syndrome population because of the multiple high-risk factors involved (hearing loss, hypotonicity, cognitive deficit).

The area of intervention in which a paucity of materials exists, and in which many fewer speech pathologists are providing services, is prevoca- tional training for adolescents and vocational training for adults. There is need for increased research and assessment and intervention materials to assist adults with social interactive and job-related communication skills. Many of the young adults who have received early intervention services are now adolescents. They have achieved more than previous generations of in- dividuals with Down syndrome. They are involved in community-based programs and will, for the most part, be working and living within the com- munity. Their communication needs are much greater than institutionalized persons’. Group therapy addressing pragmatics, communication interaction, and language for use in the workplace are greatly needed. Without adequate interactive communication skills, many adolescents and adults will be isolated from the community.

One fact that professionals who responded did stress was the need for in- formation and treatment on the multiple areas of oro-motor skills and com- munication skills such as feeding, motor programming of speech sounds, tongue thrust, voice disorders, and fluency problems. Each of these specific problems can occur in a person with Down syndrome, combinations of problems can occur, and it is possible for the problems to occur at different stages in the life cycle. For instance, parents have reported observing fluen- cy problems after age 10 in children who had not exhibited these problems before. The professional must not only conduct an in-depth diagnostic eval- uation but also maintain ongoing diagnostic observation of the client, to assure optimal treatment. We do not know why some children with Down syndrome have severe articulation problems, whereas others have mild artic- ulation problems or mild imprecision of articulation sounds. This area re- quires further research. The author feels that it is beneficial to provide in- tensive oro-motor exercise programs (this can involve play and use of blowing toys) for all children from ages l-3 with Down syndrome. If the child has difficulty with oro-motor movements for speech, some form of gestural com- munication should be used to supplement oral communication, to aid in the child’s language development.

498 Libby Kumin

Another area stressed in responses was the need for continuous audiolog- ical monitoring and testing, including tympanometry, because mild hearing loss or intermittent and fluctuating hearing loss interferes with acquisition of phonemes and language concepts.

There are many unanswered research questions. Is there a strong relation- ship in the Down syndrome population among levels of skill in vocabulary, syntax, articulation, semantics, and pragmatics? Do ages of developmental milestones in speech and language correlate with later communication skill? Are there specific patterns of communication skills for individuals with Down syndrome? Can specific types of intervention or a specific timetable for in- tervention influence speech and language development? There is a need for further research to answer these questions.

If we determine that there are specific patterns of speech and language in individuals with Down syndrome, there is a need to develop materials and protocols for timing and type of speech and language intervention to help remediate these patterns. It appears that, at present, speech and language disorders in children and adults with Down syndrome are not treated dif- ferently from those of other clients with the same level of mental retarda- tion. Conclusions are needed. The most important need is to determine if there are specific patterns in articulation or in language that are unique to communication function in Down syndrome and if specific timetables or methods of treatment could prove beneficial to individuals with Down syn- drome.

There is also a tremendous need for a national center to coordinate infor- mation from across the country and from many different specialities. At present, 30% or less of birth certificates in Ohio report occurrence of Down syndrome; it is even difficult to find a figure for the number of individuals with Down syndrome in the United States at this time. The Down Syndrome State-of-the-Art Conference held in Boston in April, 1985, enabled profes- sionals from diverse backgrounds to begin to share information. There is a need for interprofessional dialogue to continue, in order to address the multiple problems and diverse needs of children and adults with Down syn- drome.

REFERENCES

Balkany, T. J., Downs, M. P., Jafek, B. W.. & Krajicek, M. J. (1979). Hearing loss in Down’s syndrome. Clinical Pediatrics, 18, 116-l 18.

Blager, F. B. (1980). Speech and language development of Down’s syndrome children. Semi- nars in Speech, Language, and Hearing, 1, 63-72.

Bornstein, H., Hamilton, L. B., Saulnier, K. L. & Roy, H. L. (Eds.). (1975). Thesigned English dictionaryforpreschool and elemenrary /eve/s, 1975, Washington, DC: Gallaudet College Press.

Cornwall, A. C. (1974). Development of language abstraction and numerical concept forma-

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tion in Down’s syndrome children. American Journal oJMenral Deficiency, 79, 179-190.

Kumin, L. B. (1985). Directory of speech and language pathology and audiology services for

individuals with Down syndrome. Trisomy 2I, 1, 57-114. National Down Syndrome Congress. (1984). Information Fact Sheet on Down Syndrome,

Chicago, IL.

Pueschel. S. (1984). The young child with Down syndrome, New York: Human Science Press.

Skelly, M., & Schinsky, L. (1979). Amer-Indgeslural code based on universal American indian hand talk, New York: Elsevier Science.

Yarter, B. H. (1980). Speech and language programs for the Down’s population. Seminars in Speech, Language, Hearing, 1, 49-6 I.