Children With Down Syndrome

INTRODUCTION

Studying children with Down syndrome (DS), Lenneberg (1967) would argue, should be a wonderful way to study language development. Rather than tracking the rapid progress ofnon-handicapped children through developmental stages, one could choose a level of interest and examine it ata leisurely pace, for exactly the same effect. Despite substantial delays in the onset and timing of language development, the language structures that are acquired by children with DS have standardly been described as normal, unremarkable in the sequence of their development, and with no evidence of deviant forms not observed at some point in normal development.

The evidence presented here does not challenge this standard view; like prior investigators we find no evidence for aberrant constructions in children with DS. The aim here is to move beyond the descriptive account of "delay without deviance" towards a better understanding of the nature and extent of the language delay associated with Down syndrome. In this paper, I argue that much of the confusion and heterogeneity generated in this early research can be indeed has been alleviated by a more sophisticated developmental approach to designing and interpreting language studies. Recent studies have begun to yield consistent and coherent conclusions regarding the course of language learning in children with DS by acknowledging or removing the variability contributed by chronological age (CA), by the particular component of language being studied and by the language level at which the child is functioning-factors hypothesized to be important in normal language development. By teasing apart these factors, which have all too often been grouped together in the past, a developmental approach to the specific case of Down syndromenot only provides us with a much sharper descriptive picture than any alternative approach, but also allows us to move beyond description to shed light on the process of learning language in nonhandicapped populations.

1.STUDYING THE LANGUAGE OF CHILDREN WITH DOWN SYNDROME

To set the stage for the discussion of language in children with down syndrome (DS), there is the need to review the general conclusions derived from the literature concerning the effects of mental retardation (MR) on language learning, without regard to etiology.

Despite the variability inherent in these studies in terms of subject population, experimental procedures, and level of language under study, there is much agreement that MR language is similar in kind to that of normals, differing only in a delay at least commensurate with the degree of retardation.

A review of the literature on spontaneous usage suggests that MR children use the same structures as younger non-MR children and even talk about the same things with the same basic vocabulary. They appear to learn language facts in the same order as non-MR children and, as has been noted in virtually every published study, the order of difficulty on any given set of task items parallels that observed normally. For example, in as much as syntactic complexity does arise in MR populations, it appears to follow a pattern of increasing difficulty mimicking the normal course of syntactic development.

In studies of comprehension, as in spontaneous production, the order of difficulty posed byvarious tasks and grammatical constructions remains comparable for MR and non-MR children.

Indeed, two studies suggest that MR children rely on strategies for comprehending sentences that are directly analogous to strategies evident in early stages of language development.

In experimentally-controlled elicitation tasks in which children are asked to produce or repeat a target utterance, MR children and non-MR children make similar kinds of errors, reductions, and deletions and show comparable effects of the grammatical structures being manipulated. For example, both groups find it easier to imitate simple active affirmative sentences than sentences that arepassive, negative, or embedded. (Berry & Foxen, 1975).

Indeed, even in highly self-conscious morphological doze tasks ("this is a dish, here are two ," Berko, 1958), which prove very difficult in absolute terms, both the order of difficulty and the error patterns observed in MR children fit expectations derived from normal developmental research.

Finally, looking across tasks also reveals a similar order of difficulty across groups of children. Both MR children and non-MR children find it easier to repeat a construction verbatim than to produceit in a controlled elicitation procedure.

In studies looking at qualitative features of MR language, it is of great significance that there is no positive evidence for novel grammatical systems or comprehension strategies defying the normal pattern of acquisition.

Despite these well-documented commonalities across MR and non-MR children, there is considerable variability in the findings particularly with regard to degree of language delay. Extremedelays in the MR child have occasionally even led some investigators to raise the possibility ofdeviant language systems. Conclusions regarding the extent of delay appear to vary depending on the age and etiology of the subjects, the task and language area under study, and the actual analysis employed. While some carefully selected samples of MR children acquire syntactic skills commensurate with MA expectations, most MR children lag behind their mental age counterparts. Studies looking at quantitative factors stress the differences between MR and non-MR language; those looking for qualitative differences stress the commonalities. In general, studies relying upon spontaneous speech samples stress qualitative similarities; those with less natural, more self-conscious tasks with pre-determined expectations tend to stress large differences in absolute levelof skill. (Bartolucci, Pierce, & Streiner, 1980, as opposed to Lovell & Bradbury, 1967). The area of language being focused upon also bears heavily upon one's conclusion regarding degree of delay.

Studies relying upon vocabulary measures find MA to be a good predictor except at abstract levels; those relying upon grammatical measures find a greater lag, such that the constructions produced by MR children are less grammatical and often less complete or "complex" than those of MA-matched controls.

Such adisparity between grammatical and lexical knowledge appears to hold up across both production and comprehension. Although comprehension skill, in particular, is very often assessed by a single undifferentiated measure confounding vocabulary size, sheer memory demand, and syntactic difficulty, those studies that do distinguish between structural markers (e.g., tense, number, negation) and open-class vocabulary suggest that there may be a relative sparing of lexical/semantic skill in MR children. Grammatical knowledge is overall extremely limited, and it appears to lag further and further behind lexical knowledge as chronological age increases whether the task is comprehension.

Because of these influences of language level, language area, and language task on performance level, in discussions concerning deviance in MR langauge, what appears to be disagreement may be more a matter of terminology than of contradictory results. Although, as stated above, no study has provided positive evidence for deviance in linguistic strategies or structures, somestudies have claimed deviance due to the absence of a structure or strategy that is present in the normal developmental sequence.

For example, although non-MR children go through a stage in which their language lacks inflectional markers, one might wish to term deviant a system in which such markers never developed. In such cases, it might better be claimed that MR language is deficient rather than deviant in as much as it is characterized by delays far exceeding what might be expected on the basis of general cognitive measures. As hinted at in this short review, in the remainder of this paper it will prove critical to distinguish carefully between language areas and to keep in mind the particular task and language level under investigation. In addition, by looking at a well-defined subgroup of MR individuals, it will be possible to remove much of the variability contributed by etiology, chronological age, and intellectual level that confounds research on more heterogeneous groups. Thus, we may ask, inchildren with DS, what of language learning remains consistent with the normal learuing process and what influence does the syndrome exert uniquely regarding specific areas of difficulty, theextent of difficulties observed, and the actual course of acquisition.

For as long as people have been studying language in MR children, there have been language studies focusing on children with DS specifically, either side by side with a more heterogeneous group or standing alone to represent retardation in general.

Despite this long-standing interest and conclusions regarding whether or not Down syndrome warrants special attention, whether language associated with DS differs in important ways from language associated with retardation generally.For example, in an overview of studies conducted in the 1950's and early 1960's, Evans and Hampson (1968) concluded that there was no pattern of language acquisition unique to children with DS. They reported that first words could appear any time from one year to six years of CA, and first sentences any time from one year to 17 years CA. There appeared to be little correlation between IQ and language level.

And, except for a generally higher incidence of articulatory and voice defects, there was no consistent relationship between how children with DS compared with other MR groups of children. On the basis of these findings, they argued that further research specifically directed to language in individuals with DS would be unrewarding.

In fact, however, research focusing exclusively on individuals with DS consistently reports a large discrepancy between measured language skill and MA-based expectations. In the same paper quoted from above, Evans and Hampson (1968) noted that the "worst" area of development in individuals with DS is language and that they lag behind MA-matched non-MR controls in language development by as much as 50%. Although the definitions of "verbal" and "nonverbal" are often quite general and vary from study to study, a large body of evidence points to a delayin speech relative to traditional motor, intellectual, and social indices. For instance, using the Stanford-Binet to assess the skills of five- and six-year-old children with DS, Thompson (1963) found that not one child in 29 had language skills that were qualitatively on a par with his overall MA score; these children were most advanced in motor development and were often more mature on the Vineland Social Maturity Scale than on the Stanford-Binet. The language delay is also evident over time, as seen in along-term longitudinal investigation of home-reared children with DS followed from birth. Share(1975) reported that, throughout childhood, development performance on language measures was well below motor and personal/social skills, as assessed by Gesell developmental norms. Several recent studies of very young children also suggest that the inferiority in language-related skills extends back to the very earliest stages of development.

Several studies suggest thatthe language handicap is even more extreme in children with DS than in other subgroups of the MR population, matched for CA and IQ. This result is consistent enough for Evans (1977) to revise his earlier position and conclude that there is "general agreement that of all sub-groups inthe severely retarded population, mongols [individuals with DS] are the most. severely language handicapped". For example, in 1969, Johnson and Abelson reported not only that the lack of the "ability to communicate with others understandably" was the most noted handicap of institutionalized adu1ts with DS, but also that this difficu1ty was far more widespread among individuals with DS than in others at a comparable level of retardation. Only 18.8% of the samplewith DS could "communicate usefully. In contrast to their inferiority on language, the group with DS was considered to be more socially adaptive and socially competent and obtained relatively better ratings on such rudimentary self-help items as toileting, dressing, and feeding. It is unfortunate that while circumventing the problem of selection inherent in such comparisons, the only language measure was extremely general and incorporated a number of different aspects of language.

In 1981, Rondal found clearer differences between MA-matched groups of moderately retarded children with and without DS when compared for performance on an elicited verbal imitation task; the group with DS showed a much greater tendency to rely upon echolalic responses, indicating a general failure to comprehend the structures in question.

For all this evidence, Rosenberg (1982) concluded that "etiology does not predict linguistic performance in the mentally retarded" on the basis of two studies that failed to find differences between groups with and without DS. In Ryan's study, the subjects in both groups were home-reared and were matched on MA (mean = 3;1 years), IQ(mean = 40) and CA (5;0 to 9;0 years). Although there were small differences regarding grammatical complexity that favored the mixed MR group over the group with DS, Ryan concluded that "the similarities between the two subnormal groups were more striking than the differences".

There is reason to suspect that the confusion concerning this question may arise in large part from the vagueness with which the "heterogeneous MR" groups are defined and derived. Such groups are standardly defined only in terms of IQ, and mayor may not include children with organic brain damage, acquired retardation, etc. Obviously, to determine the relationship between language and etiology, it is necessary to compare language development in a number ofwell-defined subgroups.

Two such studies have been conducted, with rather interesting results. Wing compared language skill in subjects with DS to the language acquired by IQ- and age-matched MR children who had suffered organic brain damage; she concluded that seriously retarded children with clear-cut organic pathology experience even greater language problems than do children with DS.

The second study looked not at the development. of grammatical or syntactic skills, per se, but focused instead upon the pattern of processing and expressive skills suggested as underlying language ability and assessed in the Illinois Test of Psycholinguistic Abilities. Previous studies had suggested that individuals with DS exhibit a characteristic profile on this test, in which verbal encoding and auditory processing are differentially impaired relative to those components stressing visual processing or motor encoding.

Burr and Rohr compared the profile for the group with DS to profiles derived for each of three other groups of MR children matched to thegroup with DS on IQ and CA. The three control groups were moderately to severely retarded asa result of biological brain damage, a known environmental cause, or no diagnosed cause. The children with DS showed a consistent disadvantage in the verbal skills relative to the visual tasks; this was true even when the tasks were matched both on dimensions of receptive versus productive skill and on the level of abstraction required.

This disadvantage was both more pervasive and greater in magnitude than that found for any of the other etiological groups, leading Burr and Rohr to suggest that early prenatal disruption yields a different pattern of loss than postnatal environmentally-caused retardation; specifically, they suggested that syntactic development was most vulnerable to prenatal disruption.

Down syndrome is characterized by a specific impairment within the language domain; further details on the nature and scope of this deficit will be developed below. Secondly, this impairment appears to be more extreme in children with DS than in other MR subgroups, particularly those in which the retardation resulted from damageat or after birth. However, the heterogeneity of the usual control group precludes a clean answer to this question.

1.1.THE LANGUAGE APPROACH

One component of such an approach, justified on the research is to restrict ourfocus to biologically well-defined subgroups.

First, we need to point out that the factors represent a unique effect on the intellectual growth curves of children with DS. Gibson (1978) reviews the evidence that MA does not increase linearly in children with DS, although it does, by definition, in the normal case. Relatively rapid growth inthe pre-school years is interrupted by plateaus in growth that become both lengthier and more frequent in the school-age years, with an actual decline in MA scores apparent by adolescence. More current work raises the possibility that early onset of Alzheimer's disease may explain the decline in IQ. The methodological implication is that matching for MA without regard to CA may group together children.

It remains to be determined whether CA exerts an effect on language development in children with DS independent of its effect on MA. However, this is the view of Lenneberg et al (1964), who made some important claims about a critical period of language acquisition based upon the language growth curves observed in his longitudinal study of 62 children with DS. Over a three-year period, children with DS who had attained puberty failed to make any discernible progress in acquiring language structure; this was in contrast to younger ages in which some growth was observed. Lenneberg (1967) argued that at puberty language learning was no longer possible due to a loss of brain plasticity. Although Lenneberg's critical period hypothesis and the data on which it was based have since been challenged on many important details. A critical period for language acquisition remains an'important theoretical construct regarding adult-child differences in second language learning. It must still be explained why native fluency in American Sign Language is achieved only by children under the age of 6 years and why age plays such a crucial role in transforming pidgin languages into creoles. Further research establishing the effects of CA specific to language learning in children with DS may prove an important empirical base for testing and refining the critical period hypothesis.

The second developmental principle derives from the "modularity" hypothesis of cognition: One cannot conduct language research without at least acknowledging the hypothesis that language is acquired, processed and represented independently of cognition generally. (SeeLenneberg, 1967, for an early statement of this hypothesis supported, in part, by his findings from research on language learning in children with DS for a current statement of the position and for a discussion of what constitutes relevant data (see Keil, 1981, for a discussion of modularity from a developmental perspective). Indeed, the well-documented dissociation between language structure and general MA in children with DS only serves to strengthen this hypothesis.

There are several methodological points following from the modular point of view. For onet.hing, the modularity hypothesis provides a strong theoretical argument against MA-matching, as it suggests MA to be a rather meaningless construct, potentially averaging over several distinct domains. It becomes only sensible to rely upon a general measure from within the language domain when matching groups of children with and without DS for comparisons of internal language structures. It also follows that to make serious statements about the specificity of the language deficit in DS, it is essential to show growth in another, distinct well-defined non-linguistic domain.

An important hypothesis is that one must in turn treat the subdomains of language and communication (morphology, syntax, lexicon, nonverbal communication, and discourse) as potentially separable and distinct domains.

Finally, in order to characterize the development of grammatical structures, one must be sensitive to the various, internally coherent, stages of language development. Although Brown (1973) introduced language stages more as descriptive aids than theoretical constructs, they have proven to be very useful heuristics, indeed, in studies of language development over the years. Whether or not distinct theoretical or biological substrata underly different stages, quite distinct grammatical systems are connoted by the pre-linguistic stage and the five stages outlined by Brown (1973) moving from one-word to complex syntax. A great deal of information would be sacrificed if performance of children at several stages of development were collapsed into a single average score. One cannot, for example, average together two children at a one-word stage (StageI) and one child with simple syntactic structures (Stage III) and claim that children with DSare on average in language stage II (consistently combining words). Even more to the point, questions asked about language in children with DS may have quite different answers dependingon the language level under study.

As is discussed below, children with DS tend to cluster at a few early stages of language development, and remain there for extended periods. This slow-motion view of development may reveal theoretically important leaps in the system that constitute major obstacles for the childwith DS, even while they are achieved seemingly effortlessly by the non-handicapped child.

We were guided by these principles in a study of the internal structure of language in adolescent children with DS conducted in 1980. This study is presented in some detail as an illustration of the developmental approach, as well as to provide a framework for further research.

2.THE NATURE OF LANGUAGE IN CHILDREN WITH DOWN SYNDROME

There are many studies of the main finding of this study: when appropriate matching procedures are employed, internal analyses fail to distinguish the language structures employed by children with down syndrome from those produced by non-mental retardation children at that language stage.This is true at the language level discussed as well as at earlier stages of development,whether it is receptive or productive knowledge being assessed. This conclusion also appears to hold in the few longitudinal studies that have been undertaken to date. The consistency of language levels within down syndrome has resulted in a number of studies focusing on a few language stages, realizing a detailed picture of language development than currently available for other groups.

The virtue of comparing language structure of children with down syndrome as a function of general language level has recently been demonstrated in several studies of retarded children with down syndrome (DS), at Brown's (1973) Stage 1. At this early stage the focus has been on determining the "relational" or "thematic" meaning sencoded in two-word combinations. Although these studies vary in the semantic coding systems employed, theyare in full agreement that children with DS choose to encode much the same thematic relations as non-MR children at the same language stage. Coggins (1979), for example, classified all two-word utterances of four children with down syndrome (aged 3;10 to 6;2) to find that they showed as much diversity as non-mental retardation children studied in Bloom, Lightbown, and Hood (1975) and Schlesinger (1971). Approximately 70% of their expressions fell into the nine "semantic categories" most frequentlyencoded by non-MR children at Stage 1. Paralleling normal development, Coggins observed a shift from Early Stage I to Late Stage I in the tendency of the children with down syndrome to rely increasingly on locative and stative categories. Coggins also noted that the children with down syndrome, like non-MR children at this stage, failed to make conditional or hypothetical statements, refer to past orfuture events, or use grammatical morphemes productively. Within this same language stage, Harris (1983) reports, that there is an effect of chronological age (CA 2;6 – 6;9 years) on language structure. The younger children with DS were indistinguishable from MLU-matched non-MRchildren, but the older children employed different means to expand their utterances.

A common feature of non-MR speaker at Stage I is the spontaneous imitation of adultutterances. Coggins and Morrison (1981) found that, like non-MR children studied by Bloom, Hood, and Lightbown (1974), children with DS are different in the amount of spontaneous imitations produced. Of primary interest to these researchers was the finding that children with DS were selective in their choice of structures to imitate: like non-MR children, they chose to imitate words that did not occur frequently in their spontaneous productions. Coggins and Morrison suggested that this selective imitation points to a strategic attempt to resolve differences between the child's productions and the adult input.

In 1980, Rondal found spontaneous imitations of children with DS to be comparable in both number and complexity to those produced by non-MR children, not only at Stage 1, but at a higher MLU level (2.5-3.0) as well. Language level was asignificant factor in both groups: in children with DS as in non-MR children, the absolute number of imitations decreased and the length and complexity of imitations increased as language levelimproved. In both groups, there was a tendency to imitate the end of a maternal utterance, which Rondal suggests shows a "perceptual cent ration" on the final part of adult expressions. Indeed, of a wide number of measures taken, the only difference distinguishing the children with DS from the non-MR children was a greater tendency to imitate modifiers from the mother's speech.

Two studies have been conducted, looking at the internal structure of language as it develops over time, starting at Stage I. Dooley (1977) conducted a year-long observational study of two children with DS (IQ 51 and 44; starting CA 3;10 and 5;2); both children were in Brown's (1973) language Stage I throughout the study. Over the year, one child made approximately one month'sprogress (MLU 1.48 to 1.75) relative to non-MR children studied in Brown (1973); the other childactually declined somewhat in MLU (1.84 to 1.73). With the exception ofthe fact that they failed to change significantly over the period, the children were similar to Stage I non-MR children on internal measures, such as semantic relations, grammatical morphemes, expression diversity and size of lexicon. The only difference of note was a greater tendency on the part of the children with DS to rely heavily on expressions (it, they, here, there, do) in keeping with our findings above. Dooley, notes that this tendency also varies in the normal population.

Fowler (1984) reports on a child with down syndrome, a girl (IQ 57; CA 4;3 to 7;5) was observedon a monthly basis over a three year period (CA 4;3 to 6;11 years); her language moved from Stage I to Stage III/IV over this time period. Despite a slow start in Stage I, the girl grew consistently from MLU 1.4 to 3.5 in a normally period of time, 13 months. This was followed by an extended period of time, 10 months at the 3.5 period. Near the close of the study, she was increasing into Stage V (MLU = 4.0), but with considerable fluctuation. On internal analyses, such as semantic relations, grammatical morphology, negative and interrogative constructions, her language was indistinguishable from the norm between the stages of I and III, but fora slight advance in semantic relations relative to MLU. Upon reaching the 3.5 , progresson these internal measures and interesting generalizations were observed in the verbal auxiliary system and interrogation. Although modest further progress has been made in hypersyntactic development, this development appears to have diverged from the normal course both in rate and character. At a higher language level, Ryan (1975, 1977) compared children with DS with non-MR and non-DS MR children general measures of internal structure evident in spontaneous speech; she too found no differences between groups when matched on MLU. In a study on thematic relation sextending the work above with Stage I children, Layton and Sharifi (1979) found that school-aged children with down syndrome used verb types similar to non-MR children matched on MLU. However, they did find different proportions of usage. Most notable was a much lower use in the DS group of "process" verbs involving a change of stage, e.g., John cut the paper, to explain which they invoked a conceptual deficiency.

Rondal (1978a) found no overall differences between children with DS and language-matched controls on syntacticcomplexity as determined by Lee's (1974) Developmental Sentence Scoring procedure. Like Wiegel-Crump (1981) he reports that at the higher MLU levels advanced constructions fail to develop in the child with DS at a level with normal expectations.

Studies of comprehension skill as a function of general language stage suggest that structural language deficits cut across comprehension equivalently. Bridges and Smith (1984) compared the performance of children with DS (CA 4;4 to 17;1) with that of non-MR children (CA 1;11 to4;4), when asked to act out active and passive semantically biased and neutral sentences. Rather than relying upon MA, they used a general standardized comprehension measure (Reynell, 1969)as their criterion for selecting normal controls. There were six groups of matched pairs ranging in VCA (Verbal Comprehension Age) from 2;6 to 5;0 years. In this study, groups did not differ significantly in overall percentage correct response. The pattern of errors was comparable acrossgroups; the groups were affected equivalently by manipulations of the semantic plausibility of the sentences presented. The children with DS were, however, six to twelve months behind thenon-retarded children in acquiring syntactic comprehension strategies.

Fowler (1984) also used an object manipulation procedure to compare the syntactic comprehension strategies and skills of school children with DS (CA 6;9 to 16;8) with those of young toddlers (CA 2;3 to 3;2) matched for two different productive language levels (MLU 3.1.5 to 3.55and 4.0 to 4.65); the DS group had significantly higher MA's as assessed on the PPVT-R (Dunn& Dunn, 1981). The effect of syntactic type (actives, passives, datives,and three relative clause types) was constant across groups. However, there was a significant interaction between group and effect of semantic plausibility, suggesting that the children withDS may depend more heavily on semantic inferencing skills. The children with DS performed better in the plausible conditions, and worse in the implausible conditions, than did the non-MR controls.

The apparent contradiction between Fowler and Bridges and Smith is likely a function of the matching procedure. The VCA measure employed by Bridges and Smith incorporates lexical as well as syntactic knowledge; consistent with the lexical/syntactic split discussed below, it appears to have overestimated syntactic knowledge in the DS group, but to have been a fair measure of semantic inferencing skill. On the other hand, the measure selected by Fowler (MLU) turned out to be an appropriate index of syntactic comprehension knowledge, but underestimated lexical knowledge. Differences between groups in Fowler (1984) relevant to factors appear to be a function of large differences in vocabulary level.

2.1.DELAYS IN COMMUNICATION DOMAIN

Children with down syndrome experience have difficulties with verbal measures that are incommensurate with their general developmental status. In many studies language skills are not well-defined, but there is a step further to argue that even relative to other well-defined measures within the communication domain, the child with down syndrome appears to be detained in acquiring grammatical and syntactic structures. A series of studies point to a split between lexical and structural knowledge; a growing literature suggests that syntactic development may be related to other well-defined skills such as communicative function and symbolic play. These disparities are evident from the onset of syntax, with the gap only increasing as the child becomes older.

Lexical versus structural development. The study presented in detail above, the superior MA's of the children with DS relative to their MLU scores support the hypothesis that lexical knowledge in children with DS is spared relative to structural knowledge as assessed by measures of syntax and morphology. This particular hypothesis has received considerable, if indirect, support. In studies of lexical knowledge, whether the task is to produce, recognize, or identify vocabulary items, children with down syndrome are on an equality with MA-matched controls. On the other hand, when grammatical or syntactic indices are taken, children with DS perform on a lower level than their MA. Most convincing are several studies in which grammatical and lexical measures have been made on the same subjects, demonstrating a greater delay for grammatical than for lexical forms, relative to MA. This disparity is maintained whether the task involves production or comprehension structures and appears to increase with chronological andmental age.

In 1977, Evans provided evidence for a lexical split in a factor-analytic studyusing a wide range of measures including verbal and nonverbal intelligence, CA, several structuraland fluency measures derived from spontaneous speech samples, and performance. In Evans' data there was a consistent pattern of clustering of measures according to three largely distinct factors. Significantly, there was a sharp dichotomy between the "general verbal ability" factor and the "structure of speech" factor Stanford-Binet Mental Age was the highest loading on the verbal factor, but was insignificant onthe "structural" factor; CA, in contrast, loaded moderately but significantly on the "structural" factor, but not on the "verbal" factor. Those measures loading on the structural factor included sentence length, complexity, ratio of nouns to verbs and other parts of speech, and a task of grammatical morphology. These were largely independent from the general "verbal" measures including vocabulary and general intelligence. Those measure stapping fluency of speech correlated only among themselves and non significantly with the other two factors.

In 1982, Hartley found that DS difficulties in syntax surpassed those in the lexicon and went on to show that this disparity was more extreme in children with DS than in a mixed MR group. Her conclusion was based on patterns of performance on The Token Test for Children which she administered to children with DS (mean CA 11;0 years), to MR children of other etiologies (mean CA 10;7 years), and to non-MR children.The three groups were matched on receptive vocabulary score: mean MA on the PPVT was 4;2 years for each group. The Token Test, which requires the subject to manipulate wooden objects of varying shapes and colors, incorporates conditions that allow the experimenter to manipulate memory demands directly, as in (1) versus (2) below, as well as syntactic requirements, such as (2) versus (3). In this analysis, Hartley further divided the tasks standardly labeled syntactic into those she considered to be primarily syntactic and those which she thought were really more lexical or "spatial," illustrated by (3) versus (4).

1.Give me the red circle

2.Pick up the big red circle and the small green square

3. Before picking up the yellow circle, touch the red square

4. Put the white circle in front of the blue square

Both groups of MR children were significantly less successful on all parts of the test than non-MR children matched for MA. Children with DS, in turn, performed less well than other non-DS children of similar age and IQ. Only on the spatial items was there no difference betweenthe DS and the non-DS children; this was in direct contrast to the significant difference found between MR groups on the sentences stressing syntactic skill. Although Hartley hypothesized that, children with DS process "simultaneous," but not "sequential" information, her results can also be handled by invoking a lexical/syntactic split that holds up even when the lexical items under study are highly relational spatial terms.

A more recent body of developmentally informed research has examined the development of language structure, as indexed by MLU, within the context of more general communication skills. This literature has focused on Stage I of syntactic development. The general finding is that children with DS exhibit communicative skills at a level equivalent to, or more advanced than, communicative behavior of non-MR children at Stage I. In 1985, Beeghly and Cicchetti found not only that the communicative skills of children with DS were more mature than those of MLU-matched controls, but went to show that they were equivalent to those of MA-matched controls whose MLU well exceeded that of thegroup with DS. Related findings are reported by Weiss, Beeghly and Cicchetti in regard tosymbolic play, often thought to rest on the same cognitive basis as language behavior. There too, on indices of symbolic play, children with DS perform at a level on a par with general cognitive development and are generally more advanced than their language level (Stage I) alone would predict. Other studies of older individuals with DS suggest that functional communicative skills exceed verbal abilities, but these have not been as well controlled.

One must be careful, however, to keep in mind that a relative advantage on measures of communicative skill such as turn-taking or very early gestural skill need not imply that children with DS would have any real advantage in acquiring a structured sign language over spoken language. Although there is an advantagefor gestural over spoken communication at the earliest stages of development in all children, this advantage appears to drop out for both non-MR children and children with DS prior to the onset of syntax. (Abrahamsen et. al., 198.5; Petitto, 1985).

The emergence of language. The focus is upon children who have already begun to combine words. Recently, however, there has been a surge of interest attempting to place the onset of syntax-and of first words-within a well-defined developmental context. This research on the pre-linguistic and early linguistic child with DS is in keeping with research at other stages regarding a lack of qualitative differences. Children with DS speak with the same early vocabulary (Gillham, 1979), follow highly constrained rules of lexical acquisition and select from similar kinds of nonverbal gestures as those used by normal children. Within narrow and well-defined domains, development proceeds in an orderly, if not rapid fashion.

Also consistent with the findings reviewed thus far, confusion is generat.ed at the first attempt to examine the interrelationship between one and another subdomain of language or, between general cognitive development and the emergence of language. Although Lenneberg et. al. (1964) reported that the on set of first words and first sentences in children with DS intercalated with major developmental milestones of walking and running, other studies conducted at that time suggest that children with DS show an inferiority in verbal skill relative to more general development al measures even at early ages.

A few recent studie shave made a more careful exploration of the relationship between the onset of first words and phrases, and measures of cognitive development hypothesized to underlie language skill to yield a rather complicated story.

Greenwald and Leonard (1979) focused on the pre linguistic stage, comparing performance on a sensori motor task with measures of communicative behavior in situations designed to induce either an imperative or declarative response. Children with DS and normally developing children were selected as consistently functioning either at stage 4 or 5 on three scales of the Uzgirisand Hunt (1975) Ordinal Scales of Psychological Development. At stage 4, the children with DS ranged in age (CA) from 10 to 19 months (mean IQ 52); these were compared to non-MR children between 7 and 9 months of age (mean IQ 110). At this emphatically pre-linguistic level, no group differences emerged in communication measures: both groups were equally adept at using "imperative" gestures and neither group displayed any evidence of making "declarative" gestures. More advanced levels of communicative behavior were found at stage 5 in both groups. However, although the imperative task continued to yield non significant group differences, the non-MR children (CA 9-13 months; mean IQ 125) by sensori motor Stage 5 had achieved a significant advantage over the children with DS (CA 16-26 months; mean IQ 68) in the kinds of declarative gestures relied upon. The major source of this advantage was a greater tendency on the part of the non-MR children to express themselves verbally. Indeed, the group with DS relied almost totally on nonverbal gesture whereas vocalization frequently replaced or accompanied gesture in the non-MR group.

A separate subgroup of older pre-schoolers with DS (CA 31 to 54 months; mean IQ = 62), although still at Stage 5 on the sensori motor scale, obtained more advanced communication scores and were more apt to use a verbal response than either of the younger groups. The authors suggest this shows some independence between the cognitive and linguistic tasks, perhaps facilitated by the massive linguistic intervention provided for these children.

While it seems that the Stage 5 level of sensori motor development may be associated with a wide range of comunicative skill, even within the groups with DS some of the variability may arise from grouping as a single category both verbal and nonverbal communication skills. Greenwald and Leonard's findings that declarative, but not imperative, gestures are delayed in the infant with DS are of particular interest in light of research on referential looking in the pre-linguistic infant with DS. Miller reviews several studies, most notably Jones (1977, 1980) in which children with DS exhibited significant deficits in referential looking behavior relative to general developmental level. Jones (1980), however, did not find that the children with DS vocalized significantly less than the MA-matched non-MR children. Further disentanglement of what prelinguistic behaviors do and do not correlate with later linguistic patterns will surely aid our theoretical understanding of what elements constitute precursors to language learning.

Mahoney et al. (1981) employed explicitly linguistic, opposed to communication measures to report that language skill lagged behind sensori motor functioning in very young children with DS. They matched children with DS (CA 24 to 38 months) and non-MR children (CA 12 to 19 months) on the Bayley Mental Developmental Scale such that each group approximated a developmental age of 17 months (DS 13 to 23 months, mean = 16.8;non-MR 12 to 23 months; mean =17.1). Although the children with DS scored comparably orhigher than the non-MR children on 5 out of the 6 subscales of Uzgiris-Hunt scales of general sensorimotor development, the non-MR group had a substantial advantage on the vocal imitation subscale and on both receptive and expressive measures of the Receptive and Expressive Early Language Test.

Finally, in a longitudinal study bridging the gap between pre-language and language, Mervis examined the ongoing relationship between cognitive development and linguistic development. Consistent with the findings of Lenneberg et al. (1964), she reports that the emergence of referential language, both in comprehension and production, is in keeping with developmental expectations. In children with DS, referential comprehension was first demonstrated at a mean MA of 14..5 months (Bayley) in children with DS, compared to a mean MA of 13.8 months in non-MR children. Similarly, the on set of referential production occurred at a mean MA of 18.9 months in the group with DS compared to a mean MA of 19..5 months in the non-MR group. These results were supported by a separate analysis that showed children with DS andnon-MR children to be comparable in their stages of sensorimotor development at the onset of referential communication.

On the other hand, Mervis reports vocabulary size is less well associated with sensori motor measures. When groups were matched on sensori motor development at four distinct points (allwithin stages 5 and 6), vocabulary size was consistently smaller in the children with DS; the greatest difference in vocabulary size was apparent at the final point, upon complete attainment of stage 6. Mervis did not find differences in vocabulary size when she equated groups on interpolated MA levels (Bayley, 1969), but stresses that such differences were apparent in a larger-scale study conducted by Strominger, Winkler, and Cohen (1984). In that study, 36-month-old children with DS showed large deficits in vocabulary size relative to their mental age. Although they had amean mental age of 20.6 months on the Bayley scales, their vocabulary size (mean = 18.5 words;range 0 to 85) was closer to that of a normally developing child of 18 months (mean vocabulary =22) than to the average 21 month old. By 21 months, the non-MR child has typically undergone a vocabulary explosion and has an average vocabulary of 118 words. Mervis concludes that "these results suggest that a major reason for the large differences in size of vocabulary between children with DS and non-handicapped children is that the vocabulary spurt for the child with DS does not begin at the mental age that would be expected, based on the findings concerning non-handicapped children."

Given the close relationship between the vocabulary spurt and the onset of syntax in the non-handicapped child, this particular delay may presage directly the structural deficits already discussed.

2.2.LANGUAGE STRUCTURE

In recent years, much attention has been paid to the fact that, despite a poor prognosis for language development, some children with DS acquire considerable linguistic maturity and may even learn to read and write. Consider, for instance, the celebrated account of a mildly retarded DS boy (IQ 60) who learned to read and write, and kept a diary of his life from CA 11 to 45 years. At his most mature stage (age 24), his language, analyzed for syntactic complexity, was at the level of a bright five year old, except for a high redundancy of words of "low rank" and few words at a "high rank."

Despite the well-documented fact that language in DS can range from mutism to linguistic maturity, seemingly independent of IQ (Evans & Hampson, 1968; Lenneberg et. al., 1964), such reports obscure the fact that individuals with DS by and large fail to move beyond the most rudimentary stages of syntactic development. Gibson (1978) reviews two very early studies on DS language that report that DS children cluster at extremely low level of language development Muir (1903) reported that the development of language in children with DS, although paralleling that of normal children in very early vocabulary development, did not move beyond the stage of acquiring a few verbs even in his "most accomplished mongol." Similarly, Brousseau and Brainerd (1928) stated that. children with DS were "disinclined" to use sentences. More evidence derives from Thompson (1963) and Wiegel-Crump (1981), both of whom remarked upon the reliance of subjects with DS on short, simple sentences. Wiegel-Crump (1981) used Lee's (1974) Developmental Sentence Scoring procedure to assess the language skills of 80 children with DS(CA 6;0 – 12;7 years; MA 2;0 to 6;11 years). These children exhibited a more homogeneous pattern of syntactic usage than MA-matched non-MR children; they relied almost exclusively on low-level syntactic structures with very little variety of construction; this changed little across the MA-range observed.

This clustering of DS children at very low language levels is echoed in a number of recent studies, also focusing on syntactic skills, but using more experimental procedures. In 1971, Semmel and Dolley made a study of comprehension and imitation skills, relying upon the procedures and theoretical framework underlying the work of Lovell and Dixon in 1967, Lackner (1968) and Graham and Gulliford in 1968, but restricted themselves to children with DS (CA 6 to 14 years; IQ 22 to 62). Although qualitative similarities held across these studies in regard to the role of syntactic type in these tasks, Semmel and Dolley found that most of the DS subjects could comprehend and reproduce only simple active declaratives; they were at base level for negatives, passives, and negative passive sentences. Individuals with DS seemed to need contextual cues to make any sense of these sentence types.

Analogously, Evans (1977) was completely unsuccessful in his attempt to administer theBerko morphological task to his sample of 101 DS individuals (CA 8.3 to 31.1 years; MA 2.5 to 7.8 years). Out of the 101 subjects, 96 scored 6 or fewer correct responses to the 30 items in thenonsense condition; 61 could not even do the simplest task of supplying a plural for wug. Evenin his spontaneous language measures, Evans noted that "because of limited speech development no subject reached t.he ceiling in either the Sentence Structure test or the Linguistic FeaturesCount" (p. 113). In that analysis, more than a third of the utterances produced were one-word long, and the 10 longest utterances in each subject's corpus averaged only 5.2 words.

Rondal et. a1. (1981) also reported very low levels of skill in sentence repetition tasks, especially in their subjects with DS. Only three Down's subjects out of 19 (age range 5;2 to 12;7 years; IQ range 40 to 49) could successfully imitate a five word active declarative sentence; when the declarative was negative, still five words in length, only one subject could handle it. There were many echolalic responses. Although the constructions produced under these conditions wouldclearly be considered "deviant" if produced spontaneously, such constructions have been observed in very young non-MR children (24 to 30 months CA) when asked to repeat sentences well beyond their level of proficiency.

It should be noted that even studies reporting a range of language skill in individuals with DS suggest a largely homogeneous pattern. In the population studied by Lenneberg, for example, 32 of the 3.5 subjects (CA 5;6 to 13;6) for which he reports data fell into his two middle categories of stage of language development ("mostly words," "primitivephrases"). Only two of t.he 35 were at the "sentence" level of development, while one child was still at the stage. Lenneberg found relation between IQ and language level, but hint an IQ of 50, beyond which considerable syntactic competence was possible though certainly not guaranteed.

In 1977, Andrews and Andrews also reported variability in the spontaneous speech samples collected from 39 DS children ( IQ 31 to 60). Although there are methodological problems with this study due to the limited quantity of speech collected per child, it appears that the variability that exists stems primarily from usage factors (quantity of speechand the like). On structural measures such as MLU, however, the children in this sample werehighly consistent in obtaining low scores.

From these various studies, the generalization seems to emerge that DS may exert considerable influence on the ultimate language level that a DS individual child will attain. Although a few will reach the language level of a five year old and will have limited skills in reading and writing, the child with DS is not apt to move beyond the level of simple phrase structure grammar found in non-MR children younger than three years of age.

2.3.DEFICIT IN SPECIFIC LANGUAGE OF CHILDREN WITH DOWN SYNDROME

On the basis of the research presented, the course and limits on language learning in children with DS cannot be explained as a simple function of general cognitive development, either as assessed by MA or by more sophisticated measures of communicative skill or sensorimotor development. Several explanatory accounts have beenput forth in an attempt to explain why it is there is such a large discrepancy between measured MA and the final language attainments of individuals with DS, and why learning appears to stopat the point that it does. Although none of these accounts has been unequivocally ruled out, and several may play a role, I present them here as possible directions for future research.

A commonly invoked explanation for deficits in heterogeneous MR children above and beyond those predicted by general cognitive factors is that they are less motivated than non-MRMA peers in performing the task at hand. However, motivation fails to account for normal language learning: whereas it is presumably extremely crucial for all individuals tohave a rudimentary communication system for basic needs, the elaboration of such a system to incorporate complex linguistic syntactic forms lacks motivational explanation in all cases. And yet, it is just this elaboration that is lacking in the childwith DS. Note too that the child with DS studied today is not the depressed institutionalized child of yesterday about whom motivational accounts were hypothesized. Today's subjects oftenlive at home in family settings and receive special attention from very early ages at home and inthe schools. Motivation is also high in adult workshops: Evans (1977) noted his subjects with DS were highly motivated to use speech and regularly did so with the support of linguistically able non-MR adults. Nonetheless these individuals continued to perform in language well below MA expectations. Perhaps most telling concerning the role of motivation in acquiring syntax are two explicit studies of the effects of institutionalization on language in children with DS. In 1979, McNutt and Leri found that institutionalization influence progress in many areas of development, including vocabulary and Wiegel-Crump (1981) report no differences between institutionalized and home-reared children with DS on a wide range of syntactic measures.

A second account put forth to account for the extreme linguistic deficits in children with DS refers specifically to the language environment. Given the discrepancy between the child's age and linguistic capacities, it is possible that the speech directed to him or her is inappropriate.

That is, whatever advantage is derived from the tendency to speak to young children in short, simple sentences may be denied the retarded child at similar stages in the acquisition sequence. A number of studies have addressed this issue and rendered this hypothesis implausible; mothers interact with their children with DS in much the same wayas they interact with their non-MR children at comparable language levels. Most compellingis the finding that MLU is a much better predictor than MA or CA of the characteristics of amother's speech to her child. Even where differences in mother's style of interaction do emerge, it has not been possible to assign a specific result to that difference.

Mervis reports that although mothers make fewer adjustments to accommodate to the early lexical categories of their children with DS, this difference seems to have no direct effect on the categories formed and maintained by their children.

Miller is in agreement with these results, but suggests that a lack of maternal responsiveness at the pre-linguistic level may be responsible for a delay in language. In a review ofthe literature, he reports that mothers are less responsive to infants with DS (and vice versa); that mothers of infants with DS tend to talk while their chid is vocalizing rather than engaging in turntaking behavior, and that mothers are more directive, intrusive, and controlling while interacting with children with DS than are mothers interacting with non-MR children of comparable mental age.

The results of intervention studies seeking to mitigate these differences look promising; however, thus far, they lack controls. Furthermore, it is not clear how one should go about matching pre-linguistic groupsas a function of language level; we know in any case that early sensori motor and communication measures are poor indices of how far along the child is toward acquiring verbal skill.

A third proposal to account for the specific language deficit suggests that the neurological structures underlying language are particularly impaired in children with DS. Although there is overwhelming evidence of anatomical, physiological, and neurochemical abnormalities in the brain of children with down syndrome, such differences have not yet been specifically related to differences in language function. Two attempts have, however, been made to relate language differences to a lack of a dominant language hemisphere as assessed by dichotic listening tasks.

Looking for the biological underpinnings of a specific language in individuals with DS, Zekulin-Hartley (1981) administered a dichotic listening task to children with DS, to heterogeneous MR children matched to the group with DS on IQ and CA, and to non-MR controls matched to the MR groups on MA. Whereas both groups of children without DS showed the expected right ear advantage in processing linguistic serially presented auditory stimuli (digits and common object labels), children with DS showed a significant left ear advantage.

Sommers and Starkey (1977) used the dichotic listening paradigm to look at differences within the syndrome comparing two groups of children representing the extremes in language functioning. All subjects, selected from a day-school population of 150 children, met a minimum criterion of being able to point correctly to each of the dichotic words and foils used in the test; all had normal hearing and were predominately right-handed. The high-language group (n =1.5,CA 7;0 to 19;0 years, mean IQ = 46, mean MA = 64 months) was functioning at a language ageof 5;3, as assessed by the Carrow (1973) Test for Auditory Comprehension of Language. These children had a mean MLU of 7.5 words, used both simple and complex grammatical structures, and produced appropriate and intelligible verbal responses to stimulus materials. In contrast, the low performance group (n = 14, CA 7;1 t.o 17;8, mean IQ = 39, mean MA =51 months) was functioning at a language level of 3-7 years, had a mean MLU of 2..5, and spoke in three- and four- word sentences at the base phrase structure level. Their speech was telegraphic, intelligibility was poor, and verbal perseveration and inappropriate responses were common. Despite the clear differences between groups in linguistic skill, and despite the great care taken to use a sensitive and reliable measure, the ear advantage in both groups was essentially zero. This contrasted with non-MR controls (3;0 to 5;.5 years CA, mean MA 5;1) who showed the expected significant Rightear advantage. Although dichotic listening tasks are fraught with methodological pitfalls, the lack of advantage is at least suggestive of a seriously impaired language area. Converging evidence from other biological indices is crucial to exploring this hypothesis further.

The fourth explanation is Lenneberg's (1967) critical period hypothesis discussed above. As noted there, this hypothesis fails on many points. A maturational account contains a great deal of merit. All longitudinal studies spanning the pre-school years report maximal language growth to occur by age 7. For example, Share (197.5) reports on the developmental progress, measured using the Gesell developmental examination, of 76 children with DS followed from birth; at the time of the report, these children ranged from 7 to 18 years CA. In this study, most language development occurred between CA 4 and 6 years, during which time the child with DS typically moved from the development al level of 1.5 months MA to two and a half or three years MA. This report is consistent with our findings and also appears to fit with the data presented in Lenneberg. Indirect support is providedby several cross-sectional studies in which the gap between syntactic and lexical knowledge widens with growth in CA. A revised version of the critical period hypothesis would suggest that specialized language abilities are no longer available after the age of 7 years, consistent with reports from normal language development.

Alternatively, one might wish to account for these same facts not as a function of chronological age, but of linguistic stage. If, indeed, impaired brain function sets a limit on the level of language that can be accommodated, it may well be that language skill is acquired in a timely fashion consistent with general maturational development, but beyond the limiting language level, growth will cease or differ from the normal course. The considerable evidence speaking to a ceiling on language skill supports this hypothesis, but from the data presented, it is not possible to distinguish the effects of chronological age from those of language stage.

3. FURTHER RESEARCH: AUCKLAND DOWN SYNDROME ASSOCIATION

Organisation Name

·Auckland Down Syndrome Association Incorporated (ADSA Inc)

Physical Address

· Parent and Family Resource Centre, 92A Princes Street, Onehunga, Auckland 1061

Postal Address

· Auckland Down Syndrome Association Inc, PO Box 13385 Onehunga, Auckland 1643

E-mail Address [anonimizat]

Web Site www.adsa.org.nz

Phone +64 9 636 0351

Fax +64 9 636 0354

Legal Status

Not for profit organisation

Certificate of Incorporation Number 2147705 – 27 June 2008

Charities Commission – Registration Number CC3341 – 30 June 2008

GST Number -101062570

Inauguration of organisation – 1 June 1985

Affiliation with New Zealand Down Syndrome Association Inc (NZDSA Inc) through a Memorandum of Understanding dated 13 Nov 2012

Committee members are parents or grand-parents of people with Down syndrome who work voluntarily to administer the Business Plan with each committee member being responsible for a specific area in accordance with their skills, interests and experience.

Staffing

· A Community Liaison Officer is employed part time for up to 25 hours perweek/40 weeks per year

· A librarian is employed for 6 hours per week/ 40 weeks per year.

Professional and Business Advisors

Accountant Lock & Partners, Chartered Accountants, Level 1 – 171 Hobson Street, PO Box 7227 Wellesley Street, AucklandPh: (09) 379 8410

Bank ASB Bank Limited Auckland Account No: 123008-0265824-00

Mission and objectives: The Mission Statement of ADSA as specified in the Rules of Incorporation is to enhance the inclusion of children with Down syndrome .

The purposes of the organization are:

To inform and support families of children with Down syndrome

To promote for positive attitudes in the wider community

To understand the Down syndrome

To promote the rights of children with Down syndrome

To review policies and lobby government and other institutions

To promote positive public awareness through educational and media initiatives.

The Association is established for educational objectives which are:

To promote the welfare of children with Down syndrome and their families

To provide up-to-date Information that is accessible to families particularly new parents andother interested parties

To publish a quarterly newsletter

To provide information to medical practitioners, students, educators and community organisations, toenhance their interactions with people with Down syndrome

To provide ongoing links with and among families

To respond to political and social issues by making submissions to government bodies and through the media

To initiate and manage projects that will have a direct benefit to people with Down syndrome and their families

To maintain links with international Down Syndrome Associations to ensure flow of current knowledge and information

To do any other legal and lawful acts to attain these objectives and conducive to our mission statement

Establish and maintain relationships with other disability organisations.

The purposes contained in the Rules are very broad and therefore the ADSA Management Committee has developed this business plan which specifies the projects and outcomes to beachieved by the Committee and staff of the ADSA over the next three years. The specific areas of focus identified as a priority by Committee into the following key areas.

Information:

To keep families of children with Down syndrome informed of services available to them in Auckland, specifically:

Social, sporting and recreational services for people with Down syndrome and their families in Auckland – this includes information on sports providers, recreation providers and social events ;

Health and disability services available to people with Down syndrome and their families in Auckland – this includes information on respite services, behaviour support services, transition services, home and community services, day and vocational services, carer support services, supported living services;

Advocacy services and how to access them;

Educational services including information on the early intervention service options available in Auckland, the Ongoing Resourcing Scheme (ORS) and how it works, transitioning to school andfrom school and support services available to ensure successful transition.

Keep members up-to-date on news, social events, activities, spoting opportunities, courses available tothem via the web email update and the website.

Maintain and grow the ADSA Resources Library so that it becomes a key resource for members and affiliate members.

To continue to provide a “First Point of Contact” programme that ensures all people in Auckland with a diagniosis of Down Syndrome are given an NZDSA New Parent Pack and are offered a visit from a regional volunteer or are otherwise advised of the ADSA community in Auckland.

Social

Maintain a membership database.

Facilitate interaction and social events for members so that they are able to develop long term andsustainable networks and relationships with other members across Auckland.

Support and foster the activity of clubs within the membership such as the new parent support groups, the social club for youth and older people and the DADS group.

To provide social events for members such as the childrens Christmas party, an annual picnic, the annual golf day, Buddy Walk, information evenings.

Provide members information on events they may be entitled to attend such as the Auckland Christmas Parade, Southern Stars Chaitable Trust productions, Special Olympics .

Education

Continue with the Primary Education resource packs and develop the Education Resource Packs for intermediate and college level members.

Continue to provide the Education Resource Packs for all levels on an ongoing and sustainable basis.

Continue to provide and develop the “Success in Schools” courses in co-operation with the Ministry ofEducation.

Maintain ADSA respresentation on NZDSA education sub-committee.

Continue to work with NZDSED to bring ADSA perspective to national initiatives.

Provide support for transitioning from school.

Collect information about need for greater advocacy/support on school issues.

Networking with relevant disability and Government organisations

In Auckland ADSA will endeavour to develop and expand its networking with other agencies and organisations in the disability sector so that ADSA is better positioned to be aware of changes inpolicy and services available to members and to reduce duplication and fragmentation.

Participate in expos where invited for example the “Know How” expo.

Continue to be represented on the NZDSA national committee.

The areas of focus and the activities identified must be carried out in a financially sustainable, independent and self sufficient manner. To do this the Committee must actively raise funds to ensure ADSA can carry out the various activities required to ensure the above areas of focus are met. Activities must not be entered into without sufficient funding.

4. CASE STUDY

Establish The Down Syndromme Foundation, Romania

I have chosen this subject because working as a volunteer with these children I have witnessed firsthand that with proper care and "training" they can have an improved and normal live. Having Down Syndrome doesn't mean we must treat them as handicaped people without any hope of intergration in the normal society. On contrary, people with Down Syndrome can adapt and function as regular people of society, but not without help and practice. And this help must come in a very infant stage if any success is wanted. Numerous studies have shown that children who present Down Syndrome if taken care and taught have improved language capabilities, behaviour and motor skills later in life, than those who do not receive at all, or receive it when they are already in their teens. Basicaly the early the training begins the early we can see the results.

Down Syndrome must not be treated as a disease without any cure. We must treat it as a problem whose resolution takes years of training and caretaking to reach satisfying results. And each one of us can be of use. We must be the solution of the problem not the ones who point it out and then just talk about it. It depends on us if to ease their lives or burden even more. And we cannot say that our efforts are futile since there are thousand of examples of people with Down Syndrome who live a perfect normal life as adults and contributing members of society, only because someone put a little effort to enhance their lives. And that help can come in all varieties of ways: funds, medical expertise, provind a facility, helping raise awarness, completing the papers and even beeing a kind soul who just wants to help. Let us not be the part that just sits and complains about the situation since every one of us can be a contributing part for a solution.

It has become evident to me through my University research and my experiance working with children living with Down Syndrome, that Romania lags behind many countries in the areas of Down Syndrome funding, treatment, research, educationand advocacy.

It is my hope to establish a Down Syndrome Foundation in Romania to bridge the gap between current practices here and World leading DSpractices, programs and institutions. In order to ”bidge the gap”, we must identify the current situation in Romania as well as current best practices in the world.

For example, in a recent poll conducted in America, the people greatly support government programs and research for people with Down Syndrome. More precisely in a telephone survey of about 1000 Americans, conducted by Kupersmit Research on behalf of the Global Down Syndrome Foundation, found people overwhelmengly backing for government programs that provide education and training for children with Down syndrome, support for their families, and further research into the condition.

Ninety-five percent of poll respondents agreed (73 percent strongly, 22 percent somewhat) with the statement that “programs and financial support can make a huge difference in what someone with Down syndrome can achieve for themselves and their whole family”.

Around eighty-five percent agreed (61 percent strongly, 24 percent somewhat) with the statement:  “We are all better off if government invests in improving the lives of people with Down syndrome.”

Reaching in some other findings:

96 % supported (83 % strongly, 13 % somewhat) both education and training for people with DS, so they can learn job skills and training. Equally important was counseling and support to parents of children with the syndrome.

91 % believe that funding the research for Down Syndrome should be equal to or more than to the funding for research for other conditions like Fragile X or Autism. (85 % believed it should be about equal while 6 % believed funding for Down syndrome should be greater.)

NIH research funding for Down syndrome in "fiscal year 2010 equaled $50 per each American living with the genetic condition. In contrast, NIH research funding for other conditions per each American with such conditions equaled:

$137 for Autism

$573 for Fragile X, a genetic condition that leads to developmental disabilities

$2,867 for Cystic Fibrosis

$322 for Multiple Sclerosis"

Michelle Sie Whitten, executive director of the Global Down Syndrome Foundation, emphasized the need for support, “It was important for us to understand how mainstream Americans feel about programs and research for people with Down syndrome as we simply didn’t know. We are surprised and delighted by the overwhelming support,”

Down syndrome is the most frequent chromosomal disorder representing an estimated 400,000 Americans. However, federal research funding from the National Institutes of Health (NIH) for people with Down syndrome was a mere $22 million in 2010, representing 0.0007 of NIH’s annual of $31 billion budget.

As statistics, in the world one child in 800 has Down syndrome. In Romania 1 in 1000. This means that in the world there are 50 million people with this syndrome and about 35,000 in Romania. Medicaly, is the most common genetic disease and that every pregnant woman should do their screening test.

One of the oldest and most prepared centre for kids with DS in Romania is "Asociația Caritas București". This centre is active since 1992 but its location means that it offers help only for kids living in Bucharest and the surounding areas. This means that only about 30 to 50 children receive help and treatment in one year, which represents about 2 percent of Romanian kids with Down syndrome.
There is no cure for Down syndrome, but has increased the quality and life expectancy from 25 years to 60 years by treating surgical complications (birth defects and digestive problems, cataracts etc.). Also they have made progress in terms of mental retardation by placing in educational programs; most children with Down syndrome in collective integrates well with students without the disease. Diminished motor function was improved by kinetic therapy and exercise. Some people are able to make some trades and some develop a true talent in certain areas.

4.1. MUSIC THERAPY FOR CHILDREN WITH DOWN SYNDROME AT AUCKLAND DOWN SYNDROME ASSOCIATIONS

Down syndrome (DS) is a genetic disorder resulting from chromosome 21 having three copies. Cognitive functioning and anatomical features cause speech and language development delay. Children with DS generally enjoy communication (Schoenbrodt, 2004) and respond well to interaction and social scripts.

Music therapy has been extensively used in thepast four decades as a treatment for children with disabilities. Children with DS seem specifically responsive to music and show potential to be part of group music-making. In both speech and music, rhythm and sound are primary elements and all elements ofmusic may be integrated into a speech-language programme .

Family and caregiver support are required fortherapy to be effective. Caregivers’ views of music therapy for children with DS were examined as a preliminary step in the evaluation of music therapy outcomes for this population. A questionnaire examining perspectives of effects of music on the communication development of children with DS was given to 19 caregivers of children with DS working in a special school environment.

Consistent with reports in the literature, caregivers perceive children with DS as responsive to music and to have musical and communicative strengths. Caregivers perceived that communication and social skills may develop through regular music therapy sessions. These perceptions corresponded with the views of music therapists who were later interviewed as part of the study.

Neuro-imaging studies show that music and speech share common neural resources. The musical elements of sound, rhythm, melody and harmony overlap with the linguistic prosodicelements of pitch, loudness, duration and pause. Spoken communication involves not only speech, but also gestures, facial expressions, eye-contact, body postures and tones of voice.

Any communication is a process whereby messages are sent and received in such a way that the involved participants can understand the stated and implied meaning.

Music therapy aims to promote both communication and relationships. Music therapists perceive communication and social interaction as pivotal to music therapy and consider music as an alternative communication that is beneficial to clients who lack adequate verbal language, or other means to express themselves. Turn-taking ability indicates progress in the communication and social development of children and can be developed and assessed through music. Turn-taking between therapist and client is encouraged through improvisation and instrument playing in music therapy sessions.

Music therapy is too diverse and complex in clinical practice to be contained by a single approach, population, practitioner. Each practice is only a part of the whole, and should not be mistaken for the whole of music therapy, music therapy practice has a collective identity.

Music has been used for centuries as a therapeutic tool, and for religious and other ceremonies. Even today at rugby matches and during political rallies, music unites people.

The ancient Greeks considered music as essential in societies. About 17th century physicians started considering therapy from both the physiological and psychological point of view. Richard Browne notedin the early 1700s the positive effect of singing on lung difficulties. In a book written in 1748, Louis Roger, a French physician, emphasised the need for scientific observation and experiments to ascertain the effects of music on the human body.

The ‘new’ discipline of music therapy started emerging in the 1960s, based on experimental studies, structured behavioural observations, standardised tests and checklists, interviews, participant observation and narratives .

Many approaches influenced music therapy, including the behavioural approach of Gastonand Sear, where music, the tool in therapy, is are inforcement to increase or modify adaptive behaviours and extinguish maladaptive behaviours. Juliette Alvin’s Free Improvisation Therapy advocates music making and music listening. Nordoff and Robbins’ Creative Music Therapy concentrates on the potential ofthe child; this approach was developed mainly for children with developmental and learning disabilities.

Process is important in music therapy sessions and change and development are expected to occur over time, with the goal being improved quality of life. Process is facilitated by goals in therapy. The World Federation of Music Therapy indicates that any type of musiccan be used in a controlled way in music therapy sessions, including classical, jazz, rock, folk .

Singing, instrument playing, listening, moving and creating new music can all be part of music therapy sessions. Instrumental dialogue can develop through drumming or the use of other instruments. Sound, an integral part of music therapy sessions, includes pitch, volume and tone colour, for example, the differences perceived by the listener when listening to a cello versus a trumpet. Rhythm includes tempo and regular beats in the music; melody implies sounds that are put together; harmony refers specifically to the intervals between notes.

Language and music both involve perceptual, cognitive and musical processes. Humming a simple familiar tune activates complex auditory processing, attention, memory, motor programming and sensory integration circuits in the brain. Sensory awareness, auditory attention, perception, discrimination and memory can all be increased by musical experiences. Imitation and echoing ofsounds, words and rhythm are important in both speech/language and music.

In both language acquisition and music learning repetition, the repeated reinforcement of learning material is fundamental to the learning process. A child’s ability to imitate is a measure of cognitive readiness to learn language. Inboth language and music there are developmental sequences. Babies explore the musical/prosodical elements of speech in canonical babbling, continuously producing syllables consisting of a consonant and a vowel, such as /bababababa/. This is a vocal milestone for speech acquisition.

The emotional or affective aspect of thevocal exchange between parent and baby is important. Infant-directed speech influences frontal brain activity and the heart rate of babies. Long before infants can talk or sing, they try to pick up the pitch, imitate, anticipate and join in, and a tuneful, melodious duet can occur between a baby and the person interacting with them.

Caregivers’ singing and rocking has rhythmic patterns that influence the child. Young children often sing while they play, for example, bounce a ball while chanting – making up their own rhymes and singing them. Rhythm and movement both are part of the early exchange between carers and infants and are present in children’s early social play. Songs and movement sequences lead to anticipation ofcues to perform or communicate.

Children learn through spontaneous interactions in their natural environment and children with developmental disabilities can similarly learn. Early intervention programmes with children who have DS have proved to be successful in a range of domains including language and reading development.

A strength of music therapy for children with DS with language delay and unintelligible speech is the non-verbal medium created to support expression of emotions and ideas through dancing, singing and music-making.

Music therapy is a relatively new discipline in New Zealand, but it is now well-establishedas an approach for facilitating communication development and social interaction in children with developmental disabilities. Music is used asa communication tool in music therapy sessions and relationships are pivotal in these sessions. Hence, an understanding of the therapy process is important for all those working with the child. Anecdotally, the role and processes of music therapy do not ppear to be widely understood.

Therefore, the aim of the current study was to explore perceptions of music therapy amongst caregivers of children with DS in a special school setting.

Caregivers were the focus of this study as they spend considerable time with the children during the school day and see the child in a range of environments including therapy sessions and the classroom. It was hypothesised that caregivers would perceive that children with DS respond well to music, and music therapy facilitates their communication development.

Methodology:

The study was approved by the University of Auckland Human Participants Ethics Committee. The principal of a special school was approached for permission to contact teacher-aides/caregivers who were working at the school. Nineteen of 34 potential participants at the school completed the questionnaire anonymously and returned it via a drop box. Respondents had a diverse range of experience, academic background and expertise inworking with children with DS.

A 29-item questionnaire that could be completedin 10-15 minutes was developed based onother checklists developed for children with developmental disabilities and for music therapy.The final questionnaire was reviewed by clinicians and researchers prior to administration. A 6-point Likert scale was used for questionnaire responses,with ‘1’ indicating that a respondent strongly agreed with a statement and ‘6’ indicating strong disagreement. An open-ended question was included so that caregivers could write additional comments if they wished.

Results:

Caregivers’ years of experience working with students with special needs varied from 0.5-16 years, with an average of 5.5 years. Six respondents reported experience working with students with DS, varying from one to 16 years. One respondent had 40 years experience workingas a teacher with students with special needs, including DS. Six people indicated extensive experience with music therapy, four indicatedsome experience and six indicated limited experience.

The questionnaire showed excellent internal questionnaire reliability (Cronbach’s apha=0.94). Responses to most questionnaire items were clustered around certain ratings rather than normally distributed across the scale. Thus, in spite of the broad range of experience and background knowledge of the respondents, they had similar perceptions about children with DS, their communicative behaviour and their responses to music. They had a basic understanding of music therapy and indicated the importance of relationships within the music therapy session.

Their responses indicated that they recognised thatclient/student and teacher/therapist communicate with music in these sessions. Overall, caregivers agreed with the statement that music therapy means listening to different kinds of music and making music.

Caregivers strongly believed that children with DS enjoy music, like to move/dance when they hear music and they like to perform. The caregivers also indicated that conversation without words is possible in a music session. Another strong belief of caregivers was that children with DS often listen to music when they are on their own. Caregivers generally agreed that children with DS recognise songs, like to sing, laugh a lot and make sounds during music sessions.

According to the caregivers, they are keen to play instruments and imitate sounds and movements, and have a fair sense of rhythm. Enthusiasm and increase in activity levels during music sessions were indicated by care givers. Children with DS were perceived by care givers as taking turns when making music and they perceived that it may be easier to make eye contact when there is music. Caregivers perceived that generalisation takes place; that is music therapy with children with DS facilitates more effective communication in other classroom situations.

The caregivers agreed that children with DS can express emotions in music sessions and that they are often difficult to understand when they use speech. Caregivers did not think that children with DS always listen to others when they make music,they do not wait their turn patiently and they do not readily initiate new activities in music sessions.

The respondents highlighted that children with DS have very individualised ways of responding to music. In conflict with reports that children with DS enjoy music and like to listen to music when they are on their own, the caregivers perceived that children with DS do not consistently ask for music sessions. However, caregivers in this study work with children with DS who are not mainstreamed and who fall on the lower spectrum of functioning. Thus, the children may not be able to ask for music sessions, even if they would like to.

It is hoped that such a centre will significantly improve the lives of those living with Down Syndrome and their families and carers.

The following is an outline of my action plan to open such a centre in Romania.

4.2. AUDIT OF CURRENT SERVICES AND FACILITIES

I will conduct a detailed nationwide audit of all Down Syndrome services and facilities in Romania. The audit will include information relating to but not limited to

Name of organisation

Who runs the organisation including organisation structure including voluneer and paid staff.

What is the aim of the organisation

What contribution do they currently make to those living with Down Syndrome

How are they funded

What level of Government support do they receive

How many individuals do they support or have registered as being Down Syndrom

What links do they currently have with internetional DS organisations

Would they be interested in joining te foundation in order to share information for the betterment of all those living with DS.

4.3 ESTABLISH A REGISTER OF DOWN SYNDROM PATIENTS IN ROMANIA

One of the greatest challanges we have in Romania is identifying how many people are living in this country with Down Syndrom. To the best of my knowledge and research there is no official register. As part of my preliminary research in opening or establishing a Foundation of this nature is to get a more accurate understanding of how many people are affecteted by the illness in this country. An audit of medical facilities such as Doctors and Hospitals and Government medical records will help us gain a greater understanding into the scope of the illness in Romania. This will assist in the establishment of a Nationwide register of those living with DS.

The register should include:

Name, age. Address and phone numer of person living with DS?

Name of carer(s), family support?

What treatment if any they are receiving and who is providing it?

How sucessful has the treatment been?

What if any Government or voluntary assistance they are receiving?

Identifying their most urgent needs and areas fo assistance?

I propose to conduct a survey to firstly identfy who has DS in Romania. In addition to seeking information from existing DS services and institutions as outlined in Step 1, I will also seek to add more names to the register by liasing with general doctors and medical institutions. It is my belief that many DS patients in Romania are not currently alighned to DS facilities or institutions and therefore the research needs to be broadened to general practitioners and facilities to help ensure we register and reach as many DS people as possible.

At the same time, I will also utilise this research to identify those medical practitioners who have extensive experience in DS and who are passionate about improving patient outcomes. I am hoping I can identify a committed team to assist me in the running of the Foundation once it is established.

4.4. VOLUNTEER COMMITTEE

The establishment of a DS Foundation is a major task and there will be a lot of work to complete before we can even consider receiving Government, International or public financial assistance.

I will actively seek out individuals who can volunteer their time to assist me in starting and then running the Foundation.

I propose that this team of volunteers will assist in the research needed as outlined in the above two points. We may also identify additional volunteers through our research, especially medical practitioners who may be willing to volunteer their expertise.

We especially need volunteers who have some expertise in one or some of the following aeas.

Medical expertise – especially with DS

Financial expertise – an accountant who can assist in formulating budgets and funding requirements

Marketing and Communications – to assist in our communications and marketing activities to raiseawareness and funding

A kind heart – those who just want to help and are happy to assist with admin and reasearch duties

The team will also collate the information gained through our research so we have a clear understanding of the situation we hope to improve.

Once a volunteer team is established, we will apply to the Government to become a registered charity or not for pofit organisation in Romania.

4.5. INTERNATIONAL AUDIT

The volunteer committee will be tasked with the role of identifying world-wide best practices in relation to Down Syndrom, in order for us to better understand what work needs to be done in Romania to reach the international best standards.

I popose we contact international organisations and seek their assistance. Most of these organisations are more than happy to assist similar organisations committed to improving te lives of those with DS. As part of this research we need to understand

What DS work / services do they do?

How are they funded?

How much funding do they raise or receive?

How is funding allocated amongst their various services?

What do they consider to be best practice in relation to treatment, research, education and advocacy?

Is is possible to partner with them on an ongoing basis?

For example I have already sent an introductory letter to one such organisation in the United States. I have included the letter here.

Alexandra Badarau

43 B Renasterii Street

Bucharest, Romania

April 21st 2015

Mrs Michelle Sie Whitten

President and CEO

Global Down Syndrome Foundation

Suite 390

3300 East First Ave

Denver CO 80206

Dear Michelle,

I am writing to you in the hope that I may be able to establish a professional working relationship with Global Down Syndrome Foundation for the betterment of those living with Down syndrome in Romania.

I am a young Romanian woman who has worked with children living with Down syndrome and I am passionate about getting better outcomes for them and all Romanians who are affected. Sadly, we do not even have an official register in Romania of those born with the illness; discrimination is rife for those who try to lead a productive life and education as well as career opportunities are very limited. I know it doesn’t have to be this way and my letter to you is one of the first steps I am taking to change things.

I have been very impressed with what I have learnt about your wonderful organisation and the ground breaking work you do. I do not believe in “recreating the wheel” as such and hope that we may be able to make some significant inroads here, thanks to the knowledge and research you have done there. Once our organisation is established, it is my hope we too may be able to deliver some breakthroughs that we can share with you.

I must say at this point we are well behind the United States in all facets of research, advocacy and education and it is my hope that one day soon, life will be far more fulfilling for those in Romania with Down syndrome.

It is my intention to lobby the Romanian Government as well as the European Union in order to get funding to establish a Foundation much like yours here in Romania.

I am seeking your advice and support in being able to make a compelling case to the Government and EU in seeking funding. I know our chances will increase if we have the backing of a successful Foundation such as yours.

This is early days for me and I am open to any advice or strategic support you can offer me. I’m open to any ideas, suggestions or alliances you may suggest that will help improve the lives of those living with Down Syndrome.

Feel free to contact me by return mail, or via email or telephone and thank you for taking the time to consider my request.

Yours Sincerely,

Alexandra Badarau

e: [anonimizat]

p: + 40728674262.

4.6. COMPILE A DETAILED FUNDING PROPOSAL FOR DS FOUNDATION ROMANIA

Once we have a good understanding of the gap between Romania and other countries in relation to DS, we will then compile a detailed proposal of what the Foundaion needs to do to improve services here.

This poposal will include financial information so we know how much funding we require to start and then run the foundation.The foundation will generate funds in the following way

Government Grants

Fundraising activities

We need to research what typoe of grants we can apply for and if granted, how much they represent. We then need to identify how much additional funding is required, which we will need to fundraise.

4.7. ACTIVELY SEEK FUNDING

Once we have identified the funding required and have all the relevant registraions in place, we can beging lobbying the Romanian Government and the European Union for funds for the Foundation. At the same time, we will establish a dedicatd FundRaising team to start fundraising for the Foundation

4.8. OPENING THE FOUNDATION CENTRE

One of first facilities we would like to open at the Foundation is a DS Centre in Bucharest.

We hope the Government may be able to help provide us with a facility to utilise, especially in the first few years.

This facility will require a teaching room where we can work with those living with DS to help improve their life. One of the first programs I would like to run is a motor skills development program.

My University experience working with kids with DS and my research shows that a motor skills program can have significant benefits for those with DS

In the University we where following a motor skills development program for kids with Down Syndrome, as follows:

we where arrangeing the sport holl with some special equipment that the kids needed for their exercices ( small plastic balls, targets, mattres, plastic circles, benches)

music

songs

Each student had one kid with whom to do the exercises, during the hour that we were doing the exercises we where also singing different songs for kids, musig was playing non stop.

Some of the parents were staying there in tha gym with us, wainting for their kids.

The centre that I wish to open as part of the foundation would also offer this type of motor skills development. We would like to have a bus that can pick up the children and bring them to the centre, with clinical assistance available if needed duing transport. If any parent would like to come to asist at the program, program which will last for 2-3 hours, we`ll be arrange a waiting room with a big glass to be able for the parents to see inside. This is because I consider that if the parents are in the same room with the kids this can distract their attention. Also, because if a child encours any dificulty in participating in an exercise, he / she will run directly to their parent.

During the period of the exercises / program we will have also have medical asistance, should it be needed.

4.9. FUTURE OFTHE CENTRE

As the foundation and funding grows, we will be able to address more issues especially in relation to treatment, research, education and advocacy. So, therefore, the Foundation will grow over the years and gradually bridge the gap between current practices and best practices in relation to Down Syndrom.

CONSLUSIONS

Music therapists believe that music can support the child with learning difficulties to learn communication strategies in a relaxed atmosphere.

Responses to this survey indicate that, in general, caregivers within the special school setting support this view. Children with DS were generally perceived as responding well to music, and there was agreement with the view that music has the potential to enhance communication development in children with DS.

In general, the caregivers’ views were consistent with music therapists’ views that children with DS enjoy music, like to move/dance when they hear music and like to perform. The motivational aspect of music was also acknowledged. This suggests a potentially important aspect of music therapy as the literature indicates that children with DS can have poor motivation.

It is encouraging for the future of music therapy that some caregivers in the current study with no training in music therapy had the perception that this therapy is beneficial for children with DS. They generally agreed that music therapy is a non-threatening activity that takes place in an emotionally-safe environment.

One caregiver commented that everyone can succeed in music sessions and that music therapy should always be part of the programme in special schools. Children with DS have a relative strength in the areas of social interaction and hence group music therapy may be especially beneficial. It is a challenge to find treatments that can be generalised for children with DS, as there is such immense variation in abilities of these children. Music therapy can be individualised in group sessions by doing specific activities where individuals need to respond within the group.

There are established tools for measuring musical responsiveness that can be used to assess the benefits of music therapy, however, communication development should also be assessed if this is a therapy goal. The following suggested strategies for a group music therapy session for children with DS could be adopted in the other educational or therapy sessions:

Sessions should follow a structured outline, with time allowance for spontaneous development of improvisational activities.

Add sequencing activities and songs, repeated over many sessions to aid memory.

Use known songs repeatedly.

Use drums, other percussion instruments, piano, and/or guitar for part of the sessions.

Add activities that facilitate turn-taking and sharing.

Give clear, short instructions.

Add listening activities.

Use musical games and dance movements.

The relative benefits of different aspects of music making, such as singing, dancing, instrument playing, or a combination of all are not yet known and require further investigation to determine which musical activities are most beneficial for the communication and social development of children with DS. Other areas for further investigation include the musical aptitude of children with DS, the effects of choir singing and voice training on singing tones, and the use of music to improve memory and hence literacy and language development. People with DS have a broad spectrum of abilities and caregivers in the current study agreed that children with DS can show quite individualised responses to music. Because of this variability, music therapy may be of greater benefit for certain individuals with DS.

Further research is needed to determine those who will benefit most from music therapy. Parental input would be valuable in future studies to determine the role of music for children with DS outside of the school setting. There is increasing interest in the benefits of music and singing for general health and well being and brain development, both for the general population and for people with acquired or developmental disabilities.

The views of caregivers of children with DS reported here are consistent with the views of music therapists and other researchers and professionals, that people with DS show a particular interest in and aptitude for musical activities .

Further investigation using controlled intervention studies is recommended to establish the benefits of specific music therapy interventions for communication and social development of children with down syndrom.