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Early Intervention with Down Syndrome Children

Follow-up Report
BARBARA CONNOLLY, EdD, SAM MORGAN, PhD, FAY F. RUSSELL, MN, and BEVERLY RICHARDSON, BS

This report compares developmental milestones and current intellectual and adaptive functioning of 20 children with Down syndrome who participated in an early intervention program with those of 53 noninstitutionalized children with Down syndrome who did not experience such a program. The children in the former group generally showed earlier acquisition of motor and self-help skills and significantly higher intelligence quotients and social quotients at three to six years of age. Because of certain variables that could not be rigorously controlled in this type of program, the higher functioning cannot be clearly attributed to early intervention. These findings nevertheless are consistent with the hypothesis that early intervention has a beneficial effect and should provide encouragement for further studies. Key Words: Child development, Down syndrome, Parent-child relations, Patientcare team.

The 1970s may be recorded as the decade that early intervention became accepted as an appropriate way of helping potentially handicapped or developmentally delayed infants and toddlers and their families. Despite the increasing acceptance and use of such intervention by professionals in the area of mental retardation, studies are needed to demonstrate the validity of specific approaches over a span of time and to justify the significant investment of time and money in such programs. One purpose of this study

Dr. Connolly is Chief of Physical Therapy, Child Development Center, University of Tennessee, 711 Jefferson Ave, Memphis, TN 38105 (USA), and Assistant Professor of Physical Therapy, University of Tennessee Center for the Health Sciences, Memphis, TN 38163. Dr. Morgan is Professor and Director of Clinical Psychology, Memphis State University, Memphis, TN 38152. Mrs. Russell is Chief of Nursing, Child Development Center, University of Tennessee, and Associate Professor of Nursing and Child Development, University of Tennessee Center for the Health Sciences. Mrs. Richardson is Instructor, Baptist Memorial Hospital School of Nursing, Memphis, TN 38105. Address reprint requests to Dr. Connolly at the Child Development Center. This study was supported in part by US Public Health Service Grant No. 900. This article was submitted July 23, 1979, and accepted February 13, 1980.

was to assess the development and current functioning of 20 children with Down syndrome who were studied in 1975 by Connolly and Russell and who have completed the Early Intervention Program at the Child Development Center of the University of Tennessee Center for the Health Sciences.1 The second purpose was to compare these children with noninstitutionalized children who have Down syndrome and who have not had early intervention. Studies demonstrate a general decline in intelligence quotients (IQ) and social quotients (SQ) in children with Down syndrome from infancy to late childhood.2-4 This decline, however, may be decelerated with intensive early intervention. Thus, as infants and toddlers, these children present a special challenge to professionals. Melyn and White, for example, studied 612 home-reared individuals with Down syndrome ranging in age from birth through 20 years and found a fairly consistent decline in IQ.4 The mean IQ at 6 months was 58.3, whereas the mean IQ at 13 years was 37.74. In addition to the decline in IQ and SQ with age, children with Down syndrome typically show a high degree of variability in intellectual and adaptive functioning.4,5 Although all exhibit this decline with age, some children consistently function at a higher level 1405

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than others, showing a slower rate of deceleration and a higher point of leveling off in late childhood or early adolescence. What factors contribute to this wide variability in abilities? Why does one six-yearold function at a mildly retarded level while another functions at a severely retarded level? Genetic factors could contribute to this variability because intelligence in any large sample of children with Down syndrome appears to have the same polygenetic distribution as found in other individuals. Even when early educational experiences for these children are similar, there is significant variance that might be attributed to genetic influences. LaVeck and Brehm, for example, found wide variability in intellectual abilities in 5- and 6-year-olds who had all undergone the same infant and preschool program.5 A related variable is parental education. Golden and Pashayan noted a correlation between parental educational level and intellectual functioning in a group of children with Down syndrome.6 Although well-educated parents might be more likely than poorly educated parents to provide a stimulating environment and better educational opportunities for their child, the authors point out that this correlation cannot be explained solely in terms of superior environment because it might represent an interaction between environmental influences and genetic potential. Parental educational level is therefore a factor that should be controlled in evaluating the effectiveness of early intervention programs. Even though genetic influences undoubtedly contribute to the variability in intellectual development in children with Down syndrome, early intervention programs might still have positive effects on such development. Within the range of a given child's genetic potential, such programs might decelerate the rate of decline and increase the chances of a higher level of eventual functioning. The child who might have functioned as severely retarded at 6 years of age might, with early intervention, function as moderately retarded at that age. The assumption of many professionals that early intervention has positive long-range effects on the child is basic to the program being studied.

The interdisciplinary program began in 1973. The program focused on the family, and the activities were directed toward encouraging a healthy parentchild relationship and maximizing the overall development of each child. For 10 weeks in the spring and fall families brought their children to the Center one morning each week to participate in group sessions. In each session professionals spent one hour teaching and demonstrating to parents varied developmental interventions for individualized home-use stimulation programs. The parents spent the next hour in group therapy discussing feelings, concerns, and problems while the children were receiving individualized treatment. The final half-hour was devoted to feedingskill development. During the winter and summer, the staff did periodic follow-ups that included assessing the child's developmental status and updating individual programs. A diagnostic team evaluation was done in the first year of the child's enrollment, and needs in other areas such as health, nutrition, and audiology were met. The Early Intervention (EI) group (n = 20) in this study consisted of those children who participated in the EI program described above until 3 years of age, the maximum age for participation. At the time of follow-up testing, these children ranged in chronological age from 3.2 years to 6.3 years. Inasmuch as chronological age and parental educational level affect functioning in children with Down syndrome, an attempt was made to control for these two variables when selecting the Comparison group. The Comparison group (n = 53) included all children with Down syndrome who, when tested at the Center, were within the same age range as the EI group and whose parents had a mean educational level within the same range as the parents of the EI group. None of these children were institutionalized and none had participated in an early intervention program. The children had been referred to the Center for a complete diagnostic evaluation. Children with mosaicism were not included in the study. Intelligence quotients of all subjects were tested with either the Stanford-Binet Intelligence Scale or the Cattell Infant Intelligence Scale; SQs were tested with the Vineland Social Maturity Scale. All testers were licensed psychological examiners not involved in the program. Parental educational levels were determined from the routine application forms completed by parents who apply for services at the Child Development Center. Statistical analysis of the data included the t test for differences between the means of two groups and chi-square. The level of significance used throughout the study was p < .05. PHYSICAL THERAPY

METHOD Twenty of the original 40 children studied in 1975 by Connolly and Russell were again evaluated in terms of intellectual, social, motor, and adaptive functioning.1 All children had completed the early intervention program described in detail in the original report. 1406

RESULTS

Table 1 summarizes characteristics of the EI and Comparison groups and the results of the t test for differences between the means for the two groups. The t test revealed no significant differences between the means for either chronological age or parental educational level, thus indicating that these two var iables had been effectively controlled. The mean IQ for the EI group was almost 12 points higher than that for the Comparison group, a significant differ ence (p < .005) in the predicted direction. Although the difference in mean SQ between the two groups was not as large, the EI group significantly (p < .05) exceeded the Comparison group by 9 points in the predicted direction. Table 2 shows the percentage of children from each group at each level of retardation. A chi-square test revealed a significant difference 2 = 11.08, df= 4,p < .05) in the distribution of subjects across levels of mental retardation for each group (Tab. 2). Sixty-five percent of the EI subjects were at the Borderline and Mild levels, but only 24.5 percent of the Comparison subjects were at these higher levels. Further, none of the EI subjects were below the Moderate level, whereas 19 percent of Comparison subjects fell below this level. Developmental data on the Comparison group was largely from parental report and not by professional observation. Therefore, certain motor, self-help, and social milestones of the EI children were compared with the norms established for children with Down syndrome and with normal children.7,8 Table 3 reveals that EI children as a group attained skills earlier than other children with Down syndrome but generally later than normal children. Variables such as parental educational level could not be controlled and there fore might confound interpretation of differences.
DISCUSSION

TABLE 1 Summary Data for Early Intervention (n = 20) and Comparison (n = 53) Groups
Early Comparison Intervention Group Group Chronological Age (yr) Range Parental Educational Level (yr) Range Intelligence Quotient Range SD Social Quotient Range SD
a b

Difference Between Two Groups

(0
4.5 3.2-6.3 4.6 3.2-6.3 NS

14.1 10-19 54.7 38-78 12.2 64.4 41-95 15.7

13.2 10-21

NS

42.9 13-77 12.2 55.5 18-95 16.2

3.688 a

2.113 b

p < .005. p<.05.

The results are consistent with the hypothesis that intervention during infancy has a positive effect upon development of adaptive and intellectual skills in children with Down syndrome. Further, the findings suggest that early intervention facilitates acquisition of early developmental skills. Although this evalua tion of one program provides support for the effec tiveness of early intervention, any conclusions must be drawn with caution and viewed as tentative for two reasons. First, the generally higher IQs and SQs in the EI group cannot be unequivocally attributed to the ef fects of early intervention. Although the two signifi cant variables of age and parental educational level
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were controlled, other unspecified variables may have contributed to some of the differences between the groups. One such variable is that of parents' motiva tion to help their child. Highly motivated parents are more likely to be the ones who participate most actively and consistently in the program. The argu ment could then be raised that such parents would take steps to improve their child's functioning regard less of participation in a program. On the other hand, the program may have engendered and fostered mo tivation in parents who otherwise may not have made sustained efforts to maximize their child's function ing. The only way that such variables can be clearly controlled is through random assignment of children

TABLE 2 Percent of Children at Each Mental Retardation Level in EIand Comparison Groups
Mental Retardation Level Borderline Mild Moderate Severe Profound Early Intervention (n = 20) Comparison (n = 53)

(%)
10 55 35 0 0

(%)
4 20.5 56.5 15 4

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TABLE 3 Comparison of Developmental Milestones of El Group with Age Norms for Down Syndrome Children and Normal Children Behaviors8 Hold Head Erect (Zone II) Rolls Over Sits Unsupported (one minute erect) Crawls Creeps Pulls to Standing Position Stands Momentarily Alone Walks with Support Walks Unsupported Laughs Smiles First Word Finger Feeds Spoon Feeds Fork Feeds Spoon & Fork Feeds
a

Normal8 (mo) 3 5 8 8 10 10 14 13 15 4 2 10 9

Down Syndrome7 (mo) 3.5 5.7 11.3 12.5 17.3 18.4 21.5 22.3 24.8 4.8 2.9 24.3 24.3

El Group ( mo) 2.5 (N 4.2 (N 7.9 (N 8.3 (N 14.5(N 13.3(N 18.0 (N 13.2 (N 19.8(N 4.4 (N 2.7 (N 10.6 (N 9.0 (N 19.3 (N 26.5 (N 26.5 (N = = = = = = = = = = = = = = = = 20) 20) 20) 19) a 20) 20) 20) 20) 20) 18) a 19) a 19) a 18) a 19) a 16) a 16) a


18

34.8

Information from parental report and not documented by clinical observation.

to treatment and nontreatment groups. Such an assignment is usually inappropriate because it may deny treatment to children whose parents may want it. In studies on the effectiveness of service programs, rigorous control of all relevant variables can rarely be achieved. A second consideration in viewing these findings is that the children were all still quite young, ranging in age from 3 to 6 years. Although the results indicate that the EI subjects' early adaptive development was faster and their current IQs and SQs generally higher than other children with Down syndrome, the question remains whether these children will continue to function at a higher level as they grow older. Because intervention emphasized development of motor, social, and self-help skills, it is not surprising that milestones in these areas were achieved earlier. Further, IQs and SQs at these young ages are based more on assessment of these skills rather than cognitive abilities. The question, then, of long-term effects of such early intervention becomes critical at ages at which cognitive and language abilities play a more predominant role in intellectual and adaptive functioning. Inasmuch as impairment of these abilities becomes more obvious in children with Down syndrome in middle and late childhood, further followup studies are needed to determine if early intervention has any effect upon development of these skills. Although further research will shed additional light on long-term effects of early intervention on the functioning of the individual with Down syndrome,

the evidence from this study suggests that intervention during early infancy facilitates the development of intellectual and adaptive skills during early childhood. We predict that these early gains will in turn provide a substrate for later learning in other settings. Further, through participation in these programs, parents usually achieve a more realistic understanding and acceptance of the child and learn effective teaching techniques that can be applied at home on a longrange basis. All of these potential benefits appear to justify the professional interest and time devoted to such programs and stress the need for further refinement and assessment of methods used.
REFERENCES 1. Connolly B, Russell FF: Interdisciplinary early intervention program. Phys Ther 56:155-158, 1976 2. Centerwall SA, Centerwall WR: A study of children with mongolism reared in the home compared to those reared away from home. Pediatrics 25:678-685, 1960 3. Zeaman D, House BJ: Mongoloid MA is proportional to log CA. Child Dev 33:481-488, 1962 4. Melyn MA, White DT: Mental and developmental milestones of non-institutionalized Down's syndrome children. Pediatrics 52:542-545, 1973 5. LaVeck B, Brehm SS: Individual variability among children with Down's syndrome. Ment Retard 16:135-137, 1978 6. Golden W, Pashayan HM: The effect of parental education on the eventual mental development of non-institutionalized children with Down Syndrome. J Pediatr 89:603-605, 1976 7. Fishier K, Share J, Koch R: Adaptation of Gesell Developmental Scales for evaluation of development of children with Down's syndrome (mongolism). Am J Ment Defic 68:642646, 1964 8. Gesell A, Amatruda CS: Developmental Diagnosis, ed 2. New York, Hoeber, 1941 PHYSICAL THERAPY

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