Participation of Children with Disabilities in Taiwan: The Gap between Independence and Frequency
Participation of Children with Disabilities in Taiwan: The Gap between Independence and Frequency
Ai-Wen Hwang 0 1
Chia-Feng Yen 0 1
Tsan-Hon Liou 0 1
Rune J. Simeonsson 0 1
Wen-Chou Chi 0 1
Donald J. Lollar 0 1
Hua-Fang Liao 0 1
Lin-Ju Kang 0 1
Ting-Fang Wu 0 1
Sue-Wen Teng 0 1
Wen-Ta Chiu 0 1
0 1 Graduate Institute of Early Intervention, College of Medicine, Chang Gung University , Tao-Yuan, Taiwan , 2 Department of Public Health, Tzu Chi University , Hualien, Taiwan , 3 Graduate Institute of Injury Prevention and Control, Taipei Medical University , Taipei, Taiwan , 4 Department of Physical Medicine and Rehabilitation, Shuang Ho Hospital, Taipei Medical University , Taipei, Taiwan , 5 School Psychology Program, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States of America, 6 School of Education and Communication, Jonkoping University , Jonkoping , Sweden , 7 School of Occupational Therapy, Chung Shan Medical University , Taichung, Taiwan , 8 Department of Public Health and Preventive Medicine, Oregon Health & Science University , Portland, Oregon , United States of America, 9 The School and Graduate Institute of Physical Therapy, College of Medicine, National Taiwan University , Taipei, Taiwan , 10 Graduate Institute of Rehabilitation Counseling, National Taiwan Normal University , Taipei, Taiwan, 11 Ministry of Health and Welfare, Taipei , Taiwan
1 Academic Editor: Jan L. Wallander , Merced, UNITED STATES
Funding: This study was funded by the Ministry of
Health and Welfare (No. 100M4145, and 101M4100,
M03F2194) and National Science Council of Taiwan
Independence and frequency are two distinct dimensions of participation in daily life. The
gap between independence and frequency may reflect the role of the environment on
participation, but this distinction has not been fully explored.
A total of 18,119 parents or primary caregivers of children with disabilities aged 6.0-17.9
years were interviewed in a cross-sectional nationwide survey with the Functioning Scale of
the Disability Evaluation System - Child version (FUNDES-Child). A section consisting of 20
items measured the childrens daily participation in 4 environmental settings: home,
neighborhood/community, school, and home/community. Higher independence and frequency
restriction scores indicated greater limitation of participation in daily activities. Scores for
independence, frequency and independence-frequency gaps were examined across ages
along with trend analysis. ANOVA was used to compare the gaps across settings and
diagnoses for children with mild levels of severity of impairment.
A negative independence-frequency gap (restriction of frequency was greater than that of
independence) was found for children with mild to severe levels of impairment. A positive
gap (restriction of independence was greater than that of frequency) was found for children
(NSC 102-2628-B-182-001-MY3). The funders had
no role in study design, data collection and analysis,
decision to publish, or preparation of the manuscript
Competing Interests: The authors have declared
that no competing interests exist.
with profound levels of severity. The gaps became wider with age in most settings of
children with mild impairment and different diagnoses. Widest negative gaps were found for the
neighborhood/community settings than for the other three settings for children with mild to
Childrens participation and independence-frequency gaps depend not only on the severity
of their impairments or diagnoses, but also on their age, the setting and the support
provided by their environment. In Taiwan, more frequency restrictions than ability restrictions were
found for children with mild to moderate severity, especially in the neighborhood/community
setting, and increased with age. Further identification of environmental opportunities that
positively impact frequency of participation is needed.
Developmental disabilities have been defined as a collection of chronic conditions in childhood
and are manifested in cognitive, physical (e.g., motor, sensory), speech, language, or
psychological impairments during the developmental period (birth up to 22 years) . The launch of
the International Classification of Functioning, Disability and Health: Children and Youth
Version (ICF-CY) covers the important developmental period of childhood encompassing
childrens disabilities and limited functioning of body functions/structures, activities, and
participation. Its universal language and coding system can assist clinicians, educators,
researchers, administrators, policy makers and parents to document and measure the important
growth, health and developmental characteristics of children and youth .
Population-based nationwide surveys for children with developmental disabilities, usually
enrolling children aged 11 to 22 years [3,59], play an important role in documenting
epidemiological data, planning of services, evaluating prevention effectiveness and comparing health
information. In Taiwan, the Functioning Scale of the Disability Evaluation SystemChild
version (FUNDES-Child) protocol was developed in conjunction with the launch of the People
with Disabilities Rights Protection Act in 2007 . The FUNDES-Child  is based on
the Child and Family Follow-up Survey (CFFS) [14,15] for children and youth aged 6.017.9
years. The FUNDES-Child was developed to identify children with developmental disabilities
in a nationwide pediatric population to prepare for the implementation of a new service policy
based on the components of the ICF-CY.
The overall prevalence of disability or chronic conditions in children reported in nationwide
surveys varies widely. For example, prevalence was estimated to be 1.22% in Taiwan , 17%
in U.S.  and up to 30% in Canada . Varying definitions of developmental disabilities is a
major contributor to the variation of disability prevalence across countries. In the earlier
definition in Taiwan, developmental disability was attributed mainly to health conditions or
impairment of body functions, likely to be lifelong in nature and to result in substantial activity
limitations and restrictions in societal participation . In the new Disability Eligibility
Determination System in Taiwan, rules [11,18] were adopted in which both impairment of body
function and a diagnosis of disability are required to be eligible for services. In the US,
diagnoses serve as the criteria for disability , whereas in Canada, the definition of developmental
disabilities was broadened to cover chronic physical health conditions .
However, severity of body function impairments and diagnoses can only partly reflect
participation restriction of children in daily activities [5,6,19]. The framework of the ICF-CY
describes a dynamic interaction between the components of health conditions, body functions/
structures, environmental and personal factors that contribute to childrens participation .
Based on the United Nations Convention on the Rights of the Child, participation has been
described as the childs right to be respected  and is considered an ultimate outcome for
rehabilitation services based on the framework of ICF/ICF-CY [4,21]. Participation is known to
be context-dependent as it describes the functioning of an individuals social role. Therefore,
settings, such as home, school, and community where children participate in daily activities
should be identified in the investigation of childrens participation patterns. Recently,
researchers have found that children with developmental disabilities face various environmental
barriers that restrict their participation in home, school and community contexts .
In the ICF model (parent to the ICF-CY), Activity is defined as the execution of a task or
action by an individual and Participation is defined by involvement in a life situation . The
component of Activity and Participation contains two constructs, Performance and
Capacity . However, participation of children has been defined with varied terms and multiple
perspectives across measurement tools . The construct of Performance describes what an
individual actually does or does do in his or her current environment. In other words,
Performance is viewed as life experience and is highly context dependent . On the other
hand, the construct of Capacity is defined as the full ability of an individual assessed in a
standardized environment or uniform environment to neutralize the impact of different
environments on the ability of the individual . As such it may define what the child can do in
an ideal environment, usually presented with the basic ability of developmental domains in
children. Therefore, the Capacity construct identified in ICF is unsuitable to measure
Participation because Participation refers to involvement in a life situation rather than in a
standardized or uniform environment.
There is an array of measurable dimensions under the construct of participation in recently
developed measures . To explain the abilities in life situations, some researchers proposed
the term Capability as a construct to clarify and operationalize the measurable dimensions of
childrens independence or range of possible functioning in participation . Morris
defines capability as the childs predicament in the life they lead, taking into account their
capacity and available resources, social and physical environment. Therefore, capability
refers to what the child can do in real life in contrast to performance as does do in real life. In
the FUNDES-Child, capability or independence describes the childrens abilities expected
in life situation or in achieving a task or activities as assessed by a caregiver [11,12,14].
Another measurable dimension of participation used in the FUNDES-Child is frequency,
referring to the extent to which a specific task or activity was carried out [29,3335]. In this
study, Independence refers to what a child can do in real life in contrast to Frequency
which describes what a child does do in real life. The FUNDES-Child was designed to capture
both independence and frequency of childrens participation in daily life as measured by the
perspective of parents or primary caregivers [79,1113,36,37].
The gap between independence and frequency is presumed to reflect the role of
contextual facilitators and barriers on functioning and participation in that the environment
often provides the context for the difference in what the child can do and does do [4,21].
However, there has been no clear evidence to support the associations between the
independence-frequency gap and other ICF-CY components (heath conditions, body functions, and
contextual factors). Furthermore, children of school age face a transition from preschool to
school settings, or from home to community contexts, a process that generates new life
experiences. For children with disabilities, functional change across the life span, particularly in
participation, is critically important for adaptation and could be reasonably regarded as more
important than the emergence of basic developmental skills. This distinction is important
because the patterns of participation for varying age groups in population-based surveys should
be taken into account when making social service policy to identify childrens needs and
potential policy interventions.
Participation patterns in varying settings and across ages provide guidance for parents to
describe their childrens needs in daily life. The concept of an independence-frequency gap can
help in the development of policies and strategies to meet the needs of the children and their
families. The purpose of this study was to explore the patterns of gaps in participation between
independence and frequency as a function of severity of body functions and structures,
diagnosed health conditions, settings and age.
Materials and Methods
This study utilized a national disability register based on a cross-sectional design of nationwide
data collection in Taiwan. This national disability register provided the database of
comprehensive profiles of participation in children aged 6.017.9 years. A 3-step data analysis was
applied. Step 1 used all enrolled children covering a broad range of children to show the global
profile of independence and frequency across age and setting in different severity groups. To
control for possible confounders, Step 2 limited the children to the ones who had only one of
the most frequent diagnoses to examine the effects of severity, setting and diagnosis on the
independence-frequency gaps. Step 3 narrowed from Step 2 to include only children with mild
level of impairment because of its large sample size that would provide adequate statistical
power for each of the 12 age subgroups for trend analysis of frequency, independence and
gaps in different diagnosis.
The study population
This study sample consisted of parents or caregivers of 18,119 children aged 6.017.9 years,
who were interviewed between July 2012 and January 2014 following the official launch of the
Disability Evaluation System (DES) [11,18,38]. The DES is a three-stage evaluation process: (1)
medical examination (body functions/structures), (2) functional assessment (participation and
environment), and (3) needs assessment [11,38]. Demographic data and health characteristics
of the sample are presented in Table 1. The mean ages for the three data analysis steps were
12.1 (SD = 3.5) years, 12.0 (SD = 3.4) years, and 11.9 (SD = 3.4) years respectively. The
numbers of children for each year age group were evenly distributed except for a higher percentage
in the 12-year old group. The five largest diagnostic groups were intellectual disability (ID),
autistic spectrum disorder (ASD), language delay, cerebral palsy (CP), and hearing
impairment. The five diagnostic groups were collapsed into four categories in terms of functional
limitations : cognitive impairment (ID group), psychological impairment (ASD group),
language/hearing impairments (LH group), and physical impairments (CP group) for
statistical analysis at Steps 2 and 3 in this study.
Ethics approval was obtained from Taipei Medical University- Joint Institutional Review
Board. This study utilized the de-identified database of Taiwan Databank of Persons with
Disabilities (TDPD). The children were assigned a diagnosis with specific codes of the
International Classification of Disease, 9th Revision, Clinical Modification (ICD-9-CM) (http://www.cdc.
gov/nchs/icd/icd9cm.htm) to be eligible for the DES.
Major diagnoses/ICD-9-CM codesb
a The five types of diagnoses are intellectual disability, autism spectrum disorders, language delay, cerebral palsy, and hearing impairment
b Some children have more than one type of diagnosis at Step 1
Measurement of body function
The severity of body functions/structures was assessed in the first stage of the DES. Relevant
ICF/ICF-CY categories for specific diagnoses were coded by physicians trained in using a
qualifier scale from 0 to 4 points presenting no problem (0), mild (1), moderate (2), severe (3), and
profound (4). A final severity level of body function was assessed on the basis of decision rules
 for combining levels of severity of individual codes of body functions/structures. In this
sample, half of the children were classified at mild levels of severity (Table 1).
Measurement of participation
Child participation was assessed using the FUNDES-Child Section II that contains 20 items to
measure 2 dimensions, frequency and independence of participation . The items from the
Independence dimension were translated and modified from the Child and Adolescent Scale of
Participation (CASP) , one part of the CFFS. The Frequency dimension has been designed
by the Taiwan ICF team and added to each item of the FUNDES-Child Section II . Items
are scored by the 4 domains describing settings (home with 6 items, neighborhood and
community with 4 items, school with 5 items, and home/community living activities [HCLA] with
The four domains present categories of activities children would experience in the four
settings. Activities in the home setting include social, play or leisure activities, chores, self-care
activities, communication and moving around at home; community setting activities include
social, play or leisure activities, structured events, moving around and communicating with
others in community; school setting activities include educational (academic) activities, social,
play or leisure activities, moving around, and using educational material in schools; HCLA
activities include household tasks, shopping and managing money, managing schedule, using
transportation to get around, and work activities and responsibility in home and in transition
to community. The following are examples of items for specific settings: Communicating with
other children and adults at home (home), Social, play or leisure activities with friends in the
neighborhood and community (neighborhood and community), Using educational materials
and equipment that are available to other children in his or her classroom that have been
modified for your child (school), and Shopping and managing money (HCLA) .
The FUNDES-Child utilizes a proxy format in which parents or caregivers answer questions
about their childs activities in the previous 6 months. In keeping with the format used in the
FUNDES-Adult interview [11,38], flash cards with scoring options were used to assist parents
in answering questions.
In the training manual and video of the FUNDES-Child, independence was defined as the
chi1ds current level of ability to participate compared to that of other children of his or her age
in the same community. For each item, independence was rated as: 0 (independent), 1 (with
supervision/ mild assistance), 2 (with moderate assistance), 3 (with full assistance). Frequency of
participation was rated with reference to age as: 0 (the same or more than expected for age), 1
(somewhat less than expected for age), 2 (much less than expected for age), and 3 (never does).
A response of not applicable (a child would not be expected to do that activity as peers of the
same age and in the same community) was allowed for both dimensions. All items were rated
under the condition that children used assistive devices as usual. As each item was on the same
ordinal scale with the same anchor points at the extreme end (03 points), the two dimensions
were comparable based on age-expected independence and frequency.
Items rated as "not applicable were omitted in the scoring . The mean scores for each
of the 4 settings of FUNDES-Child Section II are thus the sum of scores all applicable items
divided by the number of applicable items and then converted to a 0100 scale. The certified
testers could therefore interpret the scores within the same directional framework (higher
scores represented greater restriction).
Training of FUNDES testers
Certified testers associated with 255 DES hospitals in Taiwan administered the FUNDES-Child
by interviewing childrens parents or caregivers . The certified testers were professionals
licensed as physical therapists, occupational therapists, speech therapists, social workers, clinical
psychologists, counseling psychologists, nurses, audiologists, special education teachers, and
vocational evaluators. The training programs for certified interviewers covered the procedures
of the DES and regulations (30 minutes), introduction to ICF and ICF-CY (30 mins),
introduction to assessment instruments (FUNDES-Adult [60 mins], FUNDES-Child [40 mins]),
practice of assessment instruments (200 mins), and the web-based platform for entry and storage of
data (30 mins). At the end of each training course, a paper-and-pencil test was administered to
certify the attending professionals .
Children with disabilities were identified and recruited when they entered the DES system
accompanied by his/ her caregiver or parents. The first step was usually a visit with one physician
followed by the FUNDES-Child assessment with a certified tester in a room in an authorized
hospital. The interview and rating of the FUNDES-Child lasted about 4060 minutes.
Data entry and analysis
To ensure data quality, all the assessment records were entered by the officers in hospitals into
the TDPD, a nationwide web-based information system, and checked by the officer of the local
department of health. The physician and the FUNDES qualified tester who completed the
disability assessment report were required to enter their names into the information system. The
self-detection mechanism of the information system prevented data errors and missing
responses. The data were then exported to statistical packages periodically.
According to the flow of the three steps of data reduction and analysis (Fig 1), the strategies
of analysis are described below.
In Step 1, we included all the enrolled children (n = 18,119) to illustrate the global picture
of the changes of independence, frequency and the gaps between them with age as a function
as severity and settings. The mean scores for independence and frequency were plotted on
dual Y coordinates (from age expected to most restricted based on a 0100 scale), indicating
the discrepancy between independence and frequency grouped by severity and settings across
age (Fig 2).
In Step 2, we included the children seen only in one of the more frequent diagnostic groups
(n = 13,906) to avoid the issue of comorbidity. The independence-frequency gaps were defined
as the scores of independence restriction minus the scores of frequency restriction. If the
independence-frequency gap was positive, it meant that restriction of independence was greater
than that of frequency (or doing frequency exceeded doing ability); if the gap was negative, it
meant that restriction of frequency was greater than that of independence (or doing ability
exceeded doing frequency). The gap, discrepancy between independence and frequency, is wider
if the values of the positive gap increase or the negative gap values decrease.
The independence-frequency gaps were first derived for 4 severity levels by 4 settings to
explore the effects of severity and setting on the gaps. Then, for each severity level, the gaps were
analyzed for diagnostic groups by settings to explore the effects of diagnosis and setting on the
gaps. Distribution of the severity levels of the majority of the participants (n = 13,906, 76.7%)
classified on the basis of the four major diagnostic groups is listed in Table 1. The mean gaps
(positive gaps are shown with bold characters and numbers in Table 2) were analyzed across
diagnosis/severity with ANOVA, and across setting with repeated measures ANOVA, followed
by Scheff's post hoc analyses (Table 2). Considering the significant discrepancy of sample
sizes between diagnostic/severity groups that could contribute to variance inequality, Levens
test for homogeneity was conducted before ANOVA. Welch ANOVA and Games-Howell post
hoc analyses were performed if the data failed to meet the equal variance assumption. The
relationship between independence and frequency were analyzed with Pearsons correlation in
four settings for each severity level with alpha set at 0.05 (2-tailed).
In Step 3, only the children with mild severity (n = 7,719) were included to examine the
nature of the independence-frequency gap as a function of the age by diagnosis/setting interaction
with linear trend analysis. Trends were plotted by age on dual Y coordinates, contrasting the
discrepancy between independence and frequency (Fig 3). Linear trends analyses with the
significance level set at 0.05 (2-tailed) were conducted for independence, frequency, and the gaps
across ages (Table 3). The significance of the linear trend was tested by ANOVA for 12 age
groups, and the between-groups sum of squares for the effect of age was partitioned into a
linear trend and higher order trends. The linear trend component was tested by an F-ratio (the
mean square for linear trend/error term). The statistical analyses in Step 2 and Step 3 were
performed with SPSS 20.0 (IBM SPSS, Chicago, Illinois, 2013).
For Step 1, among the 18,119 children, 1,106 (6%) children had two of the four diagnoses, and
only 16 (< 0.1%) children had more than two diagnoses. Among the children diagnosed with
an intellectual disability (n = 10,310) (Table 1), 650 children (6%) were also diagnosed with
ASD, 264 (3%) with language/hearing impairments, and 154 (1%) children with cerebral palsy.
Furthermore, there was significant association between impairment severity and the number of
Fig 1. The flow of the three steps of data reduction and analysis.
Fig 2. Independence and frequency gap by age, settings and severity levels of impairment for the whole group. Dashed lines are the restriction
frequency scores across age; solid lines are restriction independence scores across age.
comorbid conditions (Chi-square = 1145.38, P<0.001). Of the 9,561children with mild
severity, 7,720 children (81%) had only one diagnosis, while of the 1,170 children with profound
severity, 540 children (46%) had two or more diagnoses. Of the 18,119 children, 45% lived in the
northern part of Taiwan, which has the highest level of urbanization, 21% in the central part,
27% in the southern part, with 7% in the western part and some remote islands, which have the
lowest level of urbanization.
Fig 2 provides the complete picture of the settings, severity level of impairment and the
independence-frequency gap by age. A negative gap was found for children with mild levels of
impairments for all settings (Fig 2 top row). As the gaps increased with age, the significance of
the trends were further examined in Step 3. For children with moderate to profound levels of
impairment, the trends varied by setting. A positive gap was found even for children with
severe to profound levels of impairments, especially for children aged 69 years in home and
school settings (Fig 2 lower rows in home and school settings).
The analyses for Step 2 for those children with only one diagnosis revealed a similar pattern
to the whole group; that is, the mean gaps were all negative for children with mild to moderate
levels of impairment, shifting to positive for children with severe level of impairment in the
school setting, and were all positive for children with profound level of impairment (Table 2).
Comparing gaps among different severity groups with ANOVA, there were significant
differences among the 4 groups (Table 2, first box). Largest positive gaps were found for children
with profound level of severity in all the 4 settings with the widest negative gaps for the mild
group. Comparing gaps among different diagnostic groups, wider negative gaps were found
among children with mild or moderate ID in the home, neighborhood/community, and school
Mild (n = 7719)
Mild (n = 7719)
ID (n = 4966)
ASD (n = 2117)
LH (n = 531)
CP (n = 105)
ID (n = 3295)
ASD (n = 805)
LH (n = 205)
CP (n = 125)
Severe (n = 1129)
ID (n = 673)
ASD (n = 260)
LH (n = 124)
CP (n = 72)
P>S> Mod> Milh P>S> Mod> Milh
F = 318.31, P<0.001f
P> S> Mod> Milh
P>S> Mod> Milh
F = 9.88, P<0.001e
F = 4.44, P = 0.004e
LH = ASD = CP > IDg
CP = LH>ASD = IDg
F = 12.22, P<0.001 f
F = 0.80, P = 0.49 f
ASD>CP = LH = IDh
Table 2. Comparisons of the independence-frequency gaps across setting, severity and diagnosis for children with only one diagnosis of all
severity levels in body function.
F = 2.47, P = 0.06 f
CP = ASD = ID = LH h
ASD (n = 149)
LH (n = 50)
F = 1.38, P = 0.25 e
CP (n = 111)
F = 0.98, P = 0.40 e
F = 1.88, P = 0.14 f
CP = LH = ID = ASDh
settings, and children with mild ASD in the school setting (Table 2, 2nd and 3rd box). A
significantly greater positive gap was found only for the profound children with CP in home setting
(Table 2, 5th box).
Across the four settings, the widest negative gap was found significantly in the setting of
neighborhood/community for the four diagnostic groups of children with mild to severe level
of impairments based on the post hoc analysis (Table 2). For children with a profound level of
impairment, the largest positive gaps were in the school setting, especially for children with ID
and ASD (Table 2, 5th box).
The correlations between independence and performance for the four settings were
moderate (r = 0.590.70, P<0.001) for children with mild severity, were moderate to high (r = 0.66
0.76, P<0.001) for children with moderate severity, were high for both severe (r = 0.770.84,
P<0.001) and profound groups (r = 0.750.84, P<0.001).
The results of the Step 3 analysis are shown in Table 3, with mean values of frequency,
independence, gap and the corresponding trends with age for children with mild severity and
Fig 3. Independence and frequency gap by age, settings and diagnoses for the children with mild severity. Dashed lines are the restriction frequency
scores across age; solid lines are restriction independence scores across age.
graphically presented in Fig 3. A decreasing trend of independence restriction with age was
found for all diagnostic groups except children with CP at home and school settings, indicating
that parents perceived improvement of the childrens ability in daily activities. The trends of
frequency, however, are more variable than trends for independence across age groups. A
review of the trend lines in Table 3 and Fig 3 indicated that the gaps for each setting by diagnostic
group were significantly wider with age except for two diagnostic groups by settings (LH in
school setting, and CP in HCLA setting).
The results of this large-sample study provide a picture of independence and frequency of
participation using a broad distribution of severity and diagnoses of childhood disabilities in
Taiwan. About half of the sample represented children with ID (57%) or were mildly impaired in
body functions/structures (53%).
For the analysis of Step 2 in this study, widest negative gaps between independence and
frequency (indicating potentially more environmental barriers) were found for neighborhood/
community settings than the other three settings for children with mild to severe levels of
impairment (Table 2, first box), especially for children aged 69 years (Fig 2). School and home
may be the settings that provide relatively sufficient support for the less severe and younger
child to engage in activities. For children with profound levels of impairment, the discrepancy
between independence and frequency even changed to positive gaps (indicating hypothesized
environmental support) especially in school settings. It appears that children with severe and
Table 3. Mean scores of frequency, independence, and gaps between independence and frequency across setting and diagnosis and the trend
analyses for children with mild severity in body function.
Independence-frequency gap a
Dn,F = 190.24,P<0.001
Dn, F = 30.41, P<0.001
Dn, F = 43.11, P<0.001
n.s., F = 2.77, P = 0.10
Dn, F = 72.75, P<0.001
Dn, F = 13.48, P<0.001
Dn, F = 20.97, P<0.001
Dn, F = 20.97, P<0.001
Wider, F = 125.91, P<0.001
Wider, F = 116.50, P<0.001
Wider, F = 12.20, P = 0.001
Wider, F = 5.42, P = 0.02
a Values are showed for the scores of independence minus the scores of frequency
Up = significantly upward trend; Dn = significantly downward trend; ns = non-significant; ID = Intellectual disability (n = 4966); ASD = Autistic spectrum
disorders (n = 2117); LH = language/hearing impairment (n = 531); CP = Cerebral palsy (n = 105).
profound disabilities receive more support in school settings (Table 2, 1st and 4th-5th boxes).
Previous studies have shown that children with disabilities experience barriers for participation
in different settings, especially with regard to physical demands and needs in school. These
areas were largely unmet in accommodations of special computer equipment, adapted
furniture or accessibility of school buildings [24,4244]. In this study, however, the children with ID
or ASD with mild severity were even less supported than children with physical disability in
social participation (Table 2, 2nd boxes).
Social and institutional barriers have been identified as the most significant environmental
barriers in studies of children with disabling conditions in Canadian communities [26,45].
Parents reported that their children encountered greater barriers to participate in school and
work environments, and the barriers included problems with service, assistance, attitude, and
policy. Poorly designed barrier-free community facilities, difficulty getting information about
services and programs, the vague process of applying to schools, and negative attitudes were
participation challenges faced by children in these studies [26,45]. The attitudes and abilities of
teachers to modify courses and instruction were also important influential factors on the extent
of childrens participation [26,45].
Further statistical analyses in Step 3 indicated that the independence restriction to participate
in daily activities decreased significantly with age among the children with mild severity, except
for children with CP in home and school settings. The trend of frequency with age, however,
varied across the impairment by diagnosis clusters (Table 3). The trend of gaps showed that the
mean frequency restriction of participation was higher than mean independence across settings
and diagnoses and the mean independence-frequency gap became progressively wider with age
across settings (Fig 3). This may suggest that children with mild severity have fewer
opportunities to do tasks than they are capable of doing as they transition to adulthood.
It should be noted that for children with mild severity of impairment, data for independence
and frequency for children with ID and ASD were relatively more restricted than for children
with CP or LH (Table 3). The negative gap was also more obvious in children with mild rather
than severe impairment (Table 2). This may be due to the social nature of participation and the
fact that the children with ID or with mild impairment face more environmental barriers
(suggested by negative gaps) than other diagnoses or more severe groups.
In the past, eligibility for financial or social support in Taiwan was based on either
impairment or diagnosis, and the children with more severe levels of impairment or with more
observable diagnoses such as motoric (e.g., cerebral palsy) or sensory deficits (e.g., hearing loss
or visual impairments) were eligible for packaged services (especially pension or assistive
technology or home services) matched to specific diagnoses and impairment levels.
Resource distribution, however, should be based on the consideration that children with
social/emotional as well as less severe impairments also need tailored services (such as personal
support and care) aimed at the goal of optimal participation as framed by ICF-CY and
consistent with age-appropriate milestones. The joint impairment-participation decision for the
Disability Evaluation System, particularly for the large population of individuals with mild
intellectual disability is now under construction in Taiwan . The results of this study provide
evidence to inform policy and decision making for the DES.
Overall, based on the profiles of independence and frequency among children with disabilities
provided by Step 1 (Fig 2), restriction of independence in daily participation decreased with age
whereas restriction of participation frequency varied across setting and diagnosis. These data
suggest that frequency, defined as the performance dimension of participation, what children did
in the past 6 months, is a more useful variable and context-dependent measure of participation
than independence. The negative gap between independence-frequency became wider with age,
especially in neighborhood and community settings and in children with mild impairment.
Children with mild levels of impairments are probably more often in neighborhood and community
settings and thus exposed to more complex and less adapted environments. A positive gap for
participation was found for children with severe to profound levels of impairment in home and
school settings especially children aged 69 years of age. It may be that families and schools
provide more support to children of a younger age and with more severe impairment levels.
A group of children sharing the same diagnosis, such as CP, may show a wide range of
disability/functioning in daily life and some may not have limitations in mobility. Children with
various diagnoses may also share common limitations of functioning, especially for
participation in specific settings because of the environmental support or barriers encountered.
Childrens participation provides valuable information beyond diagnoses for assessing
childrens needs  in all education settings (classroom settings as well as school-related clinical
settings) with implications for continuity in the transitions from one educational level to the
next and into work and employment . Further analysis of environmental factors other than
physical settings is needed, such as parents perspective on the provision of opportunities for
activities. Continued research on the social as well as physical factors of the environment is
needed to identify the conditions and opportunities that can promote the participation of
children with disabilities.
Several limitations of this study need to be considered. First, the distribution of children
across levels of severity, diagnoses, and ages was not even. This resulted in varied mean scores
as shown in Fig 3 especially for the children with CP and in a specific age range. Second, the
comorbidity issue is an inevitable challenge in data analysis for the effects of diagnoses on
functional outcomes. Therefore, we only performed statistical analysis for Step 2 and 3 where
children with more than one type of diagnosis were excluded. Third, the FUNDES-Child was
designed to obtain caregivers or parents perceptions of childrens independence and
frequency of engaging in activities. Thus, all the information was based on ratings by caregivers or
parents within the scope of the report format of the FUNDES-Child in Taiwan. Caregivers or
parents may not be as familiar with childrens participation in the school setting as in the
home. Self-rating of participation by children was not feasible in that children often would
have difficulty comprehending the questions.
Parents rating for measuring children participation has been seen as a valid approach to
explore the patterns of participation in different settings and ages [48,49]. For children capable of
answering survey questions, they should respond for themselves  as the integration of the
childs perspective and choice is especially important for full participation in life as an active
learner [32,50]. Future studies of FUNDES-Child will prioritize self-ratings of participation by
children, perhaps using pictures of the activities. Fourth, the independence-frequency gap may
be only one of several ways to conceptualize the role of the environment. While we believe this
is one reasoned approach, others may emerge as these concepts develop over time. The
relations between gaps and environmental factors need further studies.
In conclusion, this large-sample study of participants drawn from a disability register system
encompassing a broad range of disabilities, demographic characteristics, and ages provides a
rather comprehensive picture of functional characteristics/limitations of children with
developmental disabilities in Taiwan. Diagnoses, physical conditions and related severity of
impairments and limitations of functioning and participation have been differentiated with the ICF/
ICF-CY model [4,21] and validated with empirical data [5,17]. Findings for this study indicate
that childrens participation depends not only on the severity of their impairments or
diagnoses, but also on their age, the settings and supports provided by their environments. A priority
for future research is thus further identification of environmental opportunities that positively
impact frequency of participation in daily activities for children with
We thank all the children and parents that participated in the study. We also thank the ICF
team member: Ben-Shang Chang, Shu-Jen Lu, Kwang-Hwa Chang.
Conceived and designed the experiments: AWH HFL THL SWT WTC. Performed the
experiments: AWH HFL THL SWT WTC CFY WCC LJK TFW. Analyzed the data: AWH CFY
WCC. Contributed reagents/materials/analysis tools: HFL AWH LJK CFY TFW. Wrote the
paper: AWH HFL RJS DJL CFY LJK. Research project organization: HFL THL SWT WTC.
Research project execution: HFL THL AWH.
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