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KEY WORDS
Down syndrome
mainstream school
Pediatric Evaluation of Disability
Inventory (PEDI)
pediatrics
school entry
OBJECTIVES. This study investigated the relation between functional performance skills of children with
Down syndrome and the age of entry into mainstream elementary education.
METHOD. In a cross-sectional study of 70% of the 7-year-old children with Down syndrome in Norway
(N = 43), we measured functional performance using the Pediatric Evaluation of Disability Inventory (PEDI).
The study was a follow-up of a previous study of the same children at age 5 assessed using the same instrument. Data from both studies were used in the analysis.
RESULTS. Forty percent of the sample of children with Down syndrome in Norway had entered elementary
school after a 1-year postponement (i.e., at age 7). The functional performance skills of the children, as measured using the PEDI, were significantly lower at both age 5 and age 7 in self-care and social function compared with children with Down syndrome who entered elementary school at the usual time (i.e., at age 6). The
main characteristics associated with postponed elementary school entry were found in communication skills
and bladder and bowel management.
CONCLUSION. A certain level of development and independence seems to be required for a child with
Down syndrome to be viewed as ready to enter elementary school, and perceptions of readiness for school may
be culturally dependent. In addition to the well-described challenges in language and communication skills,
being viewed as ready for school includes having stopped using diapers, a topic not previously mentioned as
a factor in postponing elementary school entry for children with Down syndrome. Awareness of culturally influenced performance skills may give direction to parents and professionals in targeting areas in the preschool
years that might help promote these childrens readiness for school.
Dolva, A.-S., Lilja, M., & Hemmingsson, H. (2007). Functional performance characteristics associated with postponing elementary school entry among children with Down syndrome. American Journal of Occupational Therapy, 61, 414420.
Anne-Stine Dolva, reg OT, MSc, is Doctoral Candidate, Lillehammer University College, N-2626 Lillehammer, Norway, and Department of Occupational Therapy,
Karolinska Institutet, Stockholm, Sweden; annestine.dolva@hil.no.
Margareta Lilja, reg OT, PhD, is Assistant Professor,
Department of Occupational Therapy, Karolinska Institutet,
Stockholm.
Helena Hemmingsson, reg OT, PhD, is Assistant
Professor, Department of Occupational Therapy, Karolinska
Institutet, Stockholm.
lementary school entry is generally described as a key life cycle transition (Pianta
& Cox, 1999). Pianta and Kraft-Sayre (1999) suggested that the transition to
school sets the tone and direction of a childs school career and is a process that
begins years in advance. For children with disabilities, many parents have to fight
to achieve sufficient arrangements for their children at this critical transition point.
It is increasingly common for children with Down syndrome to be offered
places in mainstream education (Fox, Farrell, & Davis, 2004). In Norway, where
our study took place, the political vision is one school for all. Special education
is a right, and children with disabilities are often provided with assistance in school
that addresses their individual needs (Kunnskapsdepartementet, 2007). Norwegian
law requires all children, including those with disabilities, to enter elementary
school (first grade) in the calendar year in which they reach age 6. If there is any
doubt that a child is sufficiently mature to begin attending school (Education Act
2-1), an expert judgment is needed, and parents may apply for a 1-year postponement of elementary school entry. One group of children whose school entry
is often postponed is children with Down syndrome.
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When development is delayed, as it typically is for children with Down syndrome, parents have many questions
about reasonable expectations for their child, and they want
information that can help them set realistic individual goals.
Because children with Down syndrome increasingly are
included in mainstream education, a research question of
interest is which performance skills might be associated
with viewing a child as ready for school. This study investigated the relation between functional performance skills of
children with Down syndrome and the age of elementary
school entry in mainstream education, which is a critical
transition for the child and family as well as for the school.
Down syndrome is the most common genetic cause of
developmental disability, caused in 96% of cases by a third
chromosome 21 (hence the scientific name for the syndrome, trisomy 21). The remaining 4% of people with
Down syndrome have either a form called translocation,
in which the extra chromosome 21 is acquired in a different way, or a form called mosaic, in which not all cells are
affected. Down syndrome is characterized by developmental delays in all areas of functioning, although the degree of
delay varies greatly among individuals (Spano et al., 1999).
Some children with Down syndrome have associated
impairments that may affect their development. The most
common impairments are hypotonia, heart defects, and
hearing and visual impairments (Annern, Johansson, Kristiansson, & Lw, 1997). Functional performance skills are
influenced by the childs total development and by the same
environmental supports and barriers as for all children. The
available research describes typical areas of strength and
weaknesses in the functioning of children with Down syndrome. In general, these children display a relative strength
in tasks that involve visual over auditory processing and a
relative weakness in communication skills, specifically in
expressive language and grammar (Berglund, Eriksson, &
Johansson, 2001; Dykens, Hodapp, & Evans, 1994).
Jobling (1998) described aspects of motor function, including difficulties with precise movements of limbs and fingers,
and a recent study (Fidler, Hepburn, Mankin, & Rogers,
2005) suggested that children with Down syndrome show
a specific profile of praxis deficits in early development.
A Norwegian study provided baseline information
about functional performance in 5-year-old children with
Down syndrome before entry to elementary school (Dolva,
Coster, & Lilja, 2004). These children showed a wide
range of functional performance as reflected in scores on
the Pediatric Evaluation of Disability Inventory (PEDI;
Haley, Coster, Ludlow, Haltiwanger, & Andrellos, 1992)
and additional data. Independent of the PEDI, parents
identified their main concerns as language skills, interaction with peers, not being toilet trained, and the manage-
Method
This study is a follow-up of a Norwegian cross-sectional
study of 5-year-old children with Down syndrome (Dolva
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Results
Twenty girls and 23 boys were included in the study. The
girls mean age was 88.9 months (range 8495), and the
boys mean age was 88.0 months (range 8494). Sixty percent of the children in this sample had entered elementary
school at age 6, as is customary in Norway. The remaining
40% had applied for an additional year in kindergarten.
The scores of the children who entered elementary
school at age 7 tended to be lower than those of children
who started school at age 6, although a wide range was
found in both groups. Because of this wide range, we provide both mean and median values in Table 1, which presents the childrens normative and scaled scores on the
Functional Skills Scales, and in Table 2, which presents normative and scaled scores on the Caregiver Assistance Scales.
A significant difference between the two groups was
found in Functional Skills Scales scaled scores in the domains
of self-care (p = .010) and social function (p = .019). Moreover, a significant difference between the groups was found
in Caregiver Assistance Scales scaled scores in the domains
of self-care (p = .002) and social function (p = .016).
In analyzing data from the previous study (Dolva et al.,
2004), we found that all 43 children improved their scaled
scores on the PEDI Functional Skills Scales in the domains
of self-care, mobility, and social function from age 5 to age
7. The scores of the two groups at age 5 confirmed the same
significant difference in retrospective analyses as found at
age 7. Analyses of variance confirmed that there were no
significant interaction effects between the domains.
Further analyses investigated which items within the
domains yielded significant differences between the groups.
The domains were the PEDI Functional Skills Scale
domains of self-care and social function and the Caregiver
Assistance Scale domain of social function. In addition,
consistency across studies made it possible to compare data
from the previous study in relation to age of subsequent
school entry. Table 3 presents all items associated with postponement of elementary school entry and indicates which
items already differentiated between groups at age 5.
We found no correlation between lack of bladder control
and the normative PEDI Functional Skills Scales scores in the
social function domain. We further compared the groups
improvements in Functional Skills Scales mean scaled scores
between ages 5 and 7. Scaled scores provide an estimate of the
current level of performance (regardless of age) on a scale
from 0 to 100. The children who had postponed school entry
for 1 year had about the same mean scaled score improvement in self-care and mobility as those who had started
school on time. In the social function domain, the mean
score improved slightly more in the group who entered elementary school at age 6. The mean increased from 58.8 to
67.3, compared with 54.8 to 61.4 for those with postponed
school entry. However, and because of the wide range in both
groups, the differences were not significant.
Discussion
Results indicate that a certain level of development and
independence are required for children with Down syndrome in Norway to be viewed as ready to start school. By
analyzing PEDI data gathered at ages 5 and 7, we found
that postponement of school entry was related to skills in
self-care and social function. Retrospective analyses showed
that skills related to toileting, functional comprehension
and expressive communication, problem solving, and initiation of simple household chores were significantly lower at
age 5 among children whose school entry was postponed
than among children who started on time (i.e., at age 6).
In the previous study of these children at age 5, Dolva
et al. (2004) found that parents worried that a child who
used diapers on entry to elementary school would risk
social stigmatization. The use of diapers has not previously
been mentioned in the literature as a challenge in relation
Table 1. Normative and Scaled Scores on the Pediatric Evaluation of Disability Inventory Functional Skills Scales for Children
With Down Syndrome (N = 43) Who Entered Elementary School at 6 and 7 Years Old
Normative Scores
Scale
Self-care
Started school at age 6 (n = 26)
Started school at age 7 (n = 17)
Mobility
Started school at age 6 (n = 26)
Started school at age 7 (n = 17)
Social function
Started school at age 6 (n = 26)
Started school at age 7 (n = 17)
Mean (Median)
Scaled Scores
SD
Range
8.5
8.0
8.4
13.845.9
18.245.9
13.845.9
29.2 (26.9)
31.2 (30.1)
26.1 (24.6)
Mean (Median)
69.5
71.5
66.3
85.9
86.5
85.2
65.4
67.9
61.4
(68.3)
(71.3)
(65.3)
(82.5)
(83.9)
(82.5)
(62.3)
(65.7)
(59.9)
SD
Range
7.2
7.4
5.9
8.1
6.9
9.8
9.2
8.8
8.8
56.885.1
57.485.1
56.875.9
71.6100.0
77.3100.0
71.6100.0
48.585.2
53.285.2
48.582.2
The Pediatric Evaluation of Disability Inventory (Haley, Coster, Ludlow, Haltiwanger, & Andrellos, 1992) does not provide normative score equivalents for scores of
less than 10; therefore, children with scores in that range were excluded from analyses.
417
Table 2. Normative and Scaled Scores on the Pediatric Evaluation of Disability Inventory Caregiver Assistance Scales for Children
With Down Syndrome (N = 43) Who Entered Elementary School at 6 and 7 Years Old
Normative Scores
Scale
Self-care
Started school at age 6 (n = 26)
Started school at age 7 (n = 17)
Mobility
Started school at age 6 (n = 26)
Started school at age 7 (n = 17)
Social function (N = 42a)
Started school at age 6 (n = 26)
Started school at age 7 (n = 16a)
Mean (Median)
32.9
34.9
30.1
47.4
49.5
44.0
42.9
45.3
39.1
(31.8)
(35.5)
(29.9)
(57.8)
(57.8)
(36.5)
(41.4)
(46.1)
(39.2)
Scaled Scores
SD
Range
7.5
7.2
7.0
12.2
11.7
12.7
12.0
12.7
10.0
16.051.7
18.351.7
16.047.6
24.757.8
24.757.8
24.757.8
13.174.1
26.874.1
13.152.5
Mean (Median)
SD
65.6
67.6
62.5
91.5
93.3
88.7
68.4
71.6
63.6
8.1
7.6
8.3
10.1
9.6
10.4
12.8
12.6
11.9
(64.5)
(68.8)
(62.2)
(100.0)
(100.0)
(82.5)
(67.6)
(72.5)
(65.4)
Range
45.983.2
48.683.2
45.983.2
72.7100.0
72.7100.0
72.7100.
35.9100.0
53.1100.0
35.978.6
a
The Pediatric Evaluation of Disability Inventory (Haley, Coster, Ludlow, Haltiwanger, & Andrellos, 1992) does not provide normative score equivalents for scores of
less than 10; therefore, one child with a score in that range was excluded from analyses.
to elementary school entry for children with Down syndrome. Available clinical literature in Scandinavia indicates
that children with Down syndrome stay dry day and night
by ages 4 to 5 years, about 1 year after typically developing
children (Annern et al., 1997; Lofterd, 1989); according
to Dolva et al., more than three-quarters of Norwegian 5year-olds with Down syndrome still used diapers daily. The
results of this follow-up study indicate that 51% of the 7year-old children with Down syndrome consistently stay
dry day and night (PEDI Item 68, Self-Care Scale).
Preliminary results of the Norwegian PEDI validation
study with typically developing children indicate a 10month delay in bladder and bowel management skills
(Berg, Aamodt, Stanghelle, Krumlinde-Sundholm, & Hussain, 2007) compared with U.S. reference values from a sur-
vey by Schum et al. (2002). The Norwegian reference values are in accord with results from a Swedish study by Jansson, Hanson, Sillen, and Hellstrom (2005). Although typically developing Norwegian children seem to be toilet
trained later than U.S. children, more than 90% of both
groups consistently stay dry day and night at ages 4.5 to 5.0
(Berg et al., 2007). In contrast to the custom in the United
States, most parents in Norway do not try to toilet train
their child as early as possible, instead waiting until the
child shows signs of being ready. This cultural difference
might explain why Norwegian children are toilet trained
later but nevertheless in time for elementary school entry.
Consistent with findings for both typically developing
children (e.g., Schum et al., 2002) and those with Down
syndrome (e.g., Dolva et al., 2004; Rogers, 1998), girls in
Table 3. Items From the Pediatric Evaluation of Disability Inventory Functional Skills and Caregiver Assistance Scales With a Significant
Association With Postponing Elementary School Entry Among 7-Year-Old Children Who Entered Elementary School at Age 6 (n = 26)
and Age 7 (n = 17) and Items Showing a Significant Association in Retrospective Analyses at Age 5
Item
p (Age 7)
.020
.016
.019
.026
.023
.025
.010
.025
.025
.028
.015
.025
.047
.010
.048
.038
.034
.027
.020
Significant
by Age 5
*
*
*
*
*
*
*
*
*
*
*Difference significant between groups at both age 7 and age 5. Significance level was set at .05.
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Acknowledgments
The authors are grateful to all the parents who again willingly shared their knowledge and experiences on behalf of
their children, to senior lecturer Jo Kleiven of Lillehammer
University College for statistical supervision, and to the
professional board of the Norwegian Network for Down
Syndrome for their support. The study was partially funded
by Sykehuset Innlandet.
419
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