Indian J Pediatr (December 2014) 81(Suppl 2):S151–S155
DOI 10.1007/s12098-014-1589-y
ORIGINAL ARTICLE
CDC Kerala 16: Early Detection of Developmental
Delay/Disability Among Children Below 6 y — A District Model
M. K. C Nair & G. S. Harikumaran Nair & M. Beena &
P. Princly & S. Abhiram Chandran & Babu George &
M. L. Leena & Paul Swamidhas Sudhakar Russell
Received: 27 March 2014 / Accepted: 18 September 2014 / Published online: 10 October 2014
# Dr. K C Chaudhuri Foundation 2014
Abstract
Objective To develop a district model for establishing early
detection of childhood disability below 6 y of age and to
develop appropriate referral linkages for confirmation of the
diagnosis and establish home based early intervention therapy
to all needy children.
Methods Trained Accredited Social Health Activist (ASHA)
workers conducted the preliminary survey for identifying
developmental delay/disability among children below 6 y of
age using Trivandrum Developmental Screening Chart
(TDSC) (0–6 y) and a team of experts assessed the screen
positives in developmental evaluation camps conducted at
primary health centres (PHCs).
Results Community survey was carried out and 1,01,438
children below 6 y of age in Thiruvananthapuram district were
screened by ASHA workers and 2,477 (2.45 %) positive cases
(TDSC two or more item delay) were identified and these
children were called for the developmental evaluation camps
conducted at 80 PHCs in the district. Among the 1,329 chil-
dren who reached the evaluation camps 43.1 % were normal.
24.98 % children had speech and language delay and 22.95 %
children had multiple disabilities. Developmental delay was
M. K. C. Nair (*) : P. Princly : S. Abhiram Chandran : B. George :
M. L. Leena
Child Development Centre, Thiruvananthapuram Medical College,
Thiruvananthapuram 695011, Kerala, India
e-mail: cdcmkc@gmail.com
G. S. Harikumaran Nair
Clinical Epidemiology Resource & Training Centre, Government
Medical College, Thiruvananthapuram, Kerala, India
M. Beena
National Rural Health Mission, Kerala, India
P. S. S. Russell
Child and Adolescent Psychiatry Unit, Department of Psychiatry,
Christian Medical College, Vellore, Tamil Nadu, India
observed among 49.89 % children and cerebral palsy in
8.43 % and intellectual disability 16.85 % were confirmed.
Visual impairment in 3.31 % and neuromuscular disorders in
1.35 were found among children evaluated in the camp.
Conclusions The results of this district wide early detection of
disability survey by trained ASHA workers among children
below 6 y of age showed a community prevalence of 3.08 %
observed, based on two or more item delay in TDSC and
among these children, 43.1 % were normal, 49.89 % had
developmental delay, 24.98 % had speech and language delay
and 22.95 % had multiple disabilities.
Keywords Early detection . Childhood disability . Delay .
Disability . LEST
Introduction
Early childhood is a crucial phase of growth and development
because experiences during early childhood can influence
outcomes across the entire course of an individual’s life [1].
Early childhood provides children an opportunity to prepare
the foundation for life-long learning, by preventing potential
delays in development and disabilities. For children with
disability, it is an important time to ensure access to interven-
tions which can help them reach their full potential [2].
Scientific research has clearly shown that an impairment
detected and treated at an early stage has a much better
prognosis; ultimately preventing the impairment from becom-
ing a disability. A Lancet series on “Early childhood develop-
ment in developing countries”, estimated that over 200 million
children in developing countries are not reaching their full
developmental potential [3]. If children with developmental
delays or disabilities and their families are not provided with
timely and appropriate early intervention, support and
S152
protection, their difficulties can become more severe—often
leading to life time consequences.
Systems for early identification of developmental delay are
required in order to facilitate timely access to services and to
support the development of children at significant risk for
developmental delays [4]. Unfortunately many children with
disabilities in developing countries, particularly those with
“mild to moderate” disabilities, are not identified until they
reach school age [5]. Accurate assessment is an important
starting point for better understanding and anticipating the
needs of children with disabilities and their families.
Assessment should be linked to intervention and should be
an ongoing process of systematic observation and analysis.
In order to facilitate early detection of childhood disability
and planning a comprehensive and sustainable early therapy
program, Child Development Centre Kerala, had started the
Childhood Disability Project with the support of National
Rural Health Mission (NRHM), Kerala and utilizing the
existing health infrastructure. The project was envisaged to
develop a district model for establishing early detection of
childhood disability below 6 y of age and develop appropriate
referral linkages for confirmation of the diagnosis and estab-
lish home based early intervention therapy to all needy
children.
Material and Methods
The project was initiated with a stakeholders meeting of
Thiruvananthapuram district. This was followed by develop-
ment and validation of two community developmental screen-
ing tools and assessment of probable risk factors for develop-
mental delay/disability using a structured pre-tested question-
naire administered to the parents/primary care givers of chil-
dren, who participated in the tool validation. The project was
implemented with the support of NRHM, Kerala and utilizing
the services of trained ASHA workers, who conducted the
preliminary survey by individual house visit and repeat visit if
mother or child was not available on first visit for identifying
developmental delay/disability among children below 6 y of
age under the supervision of NRHM Public Relations
Officers. Individual TDSC forms of each child collected was
evaluated by developmental therapists (with more than
3 years’ experience in developmental assessment) and those
with two or more item delay were identified and called for the
developmental evaluation camp of the concerned panchayat
with the help of the concerned ASHA worker. The assessment
of the screen positives were done by the multi-disciplinary
project team.
Those children with two items delay on TDSC were
assessed in the developmental evaluation camps at PHC level
in a relatively quiet room in the presence of mother/care giver
and in a child friendly manner. First LEST and a repeat TDSC
Indian J Pediatr (December 2014) 81(Suppl 2):S151–S155
was administered to all the children brought to the camp by the
two trained special educators. Denver Developmental
Screening Test-II (DDST-II) was administered by the devel-
opmental therapists, the Vineland Social Maturity Scale
(VSMS) for all and Seguin Form Board (SFB) for the needy
by the clinical psychologist, Receptive Expressive, Emergent
Language Scale (REELS) by the speech therapist and cerebral
palsy assessment by the physiotherapist. All the children were
examined in detail by the pediatrician and assigned a diagno-
sis with the test results and in consultation with the other team
members whenever required. Ethical clearance was obtained
from the Institutional Ethical Committee of Child
Development Centre and informed consent was obtained from
the primary care givers of the children. Data was analyzed
using SPSS 11.0 version. For known risk factors of develop-
mental delay odds ratio was calculated.
Results
The details of steps involved in organizing this district model
were as follows:
Step 1: Stakeholders meeting: The community stakeholders
meeting for health care providers and NRHM Kerala
officials finalized (i) objectives of the project, (ii)
micro planning and (iii) strategies to get maximum
cooperation of the community.
Step 2: Development and validation of community screening
tools: Two new tools namely; (i) Trivandrum Deve-
lopmental Screening Chart (TDSC 0–6 y) [6] and
Language Evaluation Scale Trivandrum (LEST: 0–
6 y) [7] were developed at CDC, Kerala and validat-
ed against Denver Developmental Screening Test
(DDST) and Receptive Expressive Emergent
Language Scale (REELS) respectively in a valid
sample of 1,250 children of 0–6 y age group from
urban, rural and tribal anganwadi areas of
Thiruvananthapuram district in 2010–11 [8].
Step 3: Assessment of risk factors for developmental delay/
disability: A case control analysis was done using a
structured pre-tested questionnaire administered
among 1,204 parents of children, who participated
in the tool validation.
Table 1 shows the strength of association of
known risk factors for developmental delay. Low
birth weight (OR:2.36; 95 % CI:1.34–4.16), neona-
tal jaundice with phototherapy (OR:2.45; 95 %
CI:1.23–4.88), twin and multiple gestation (OR:
3.96; 95 % CI:1.31–11.98), instrument assisted de-
livery (OR:7.78; 95 % CI:1.48–40.95), breast feed-
ing for less than 6 mo (OR: 2.3; 95 % CI:1.05–5.03)
Indian J Pediatr (December 2014) 81(Suppl 2):S151–S155 S153

Table 1 Association of known risk factors and developmental delay

Risk factors DDST Odd’s Ratio (OR) Confidence Interval

(CI) (95 %)
Positive Negative

Low birth weight + 19 188 2.36 1.336–4.161

− 40 933
Neonatal Jaundice with phototherapy + 11 95 2.45 1.234–4.875
− 49 1,038
Twin and Multiple gestation + 4 20 3.96 1.31–11.98
− 56 1,100
Instrument assisted delivery + 2 5 7.78 1.478–40.952
− 58 1,128
Breast feeding of <6 mo + 8 71 2.3 1.053–5.031
− 52 1,062

were found to be significantly associated with devel-
opmental delay.
Step 4: Training programs: One day skill training programs
were organized in batches for ASHA workers
(2,327), public relation officers (PROs) of NRHM
(26), PHC medical officers (31), from
Thiruvananthapuram district for screening 0–6 y
aged children in the community for developmental
delay/disability, using TDSC (0–6 y). Apart from
this orientation programs were conducted for
Nursing Faculty (24), Supervisory Health Staffs
(70) and SarvaShikshaAbhiyan Resource teachers
(79) for facilitating community intervention.
Step 5: Community screening for developmental delay/
disability: Community screening using TDSC (0–
6) was carried out by trained ASHA workers under
the supervision of PROs of NRHM at four taluks of
Thiruvananthapuram district.
Table 2 shows that out of a total of 101,438
children (0–6 y) screened, 21,009 forms were in-
complete or of poor quality and out of the remaining
80,429 children, 6,940 (8.63 %) had one item delay
on TDSC. Out of the 2,477 (3.08 %) children with
two items delay on TDSC, 1,329 children attended
the developmental evaluation camps.
Step 6: Developmental Evaluation Camps (DEC): A total of
80 developmental evaluation camps were organized
at various community health centre (CHC)/PHCs of
Thiruvananthapuram district.
Table 3 shows the distribution of children who
attended the developmental evaluation camps.
Among 1,329 who attended and were evaluated in
the camp 60 % were boys and 40 % were girls.
31.3 % belonged to less than 3 y and 68.7 %
belonged to ≥3–6 y age group. Seven hundred
seventy six (58.4 %) had developmental delay on
TDSC and 922 (69.4 %) had delay on LEST.
Table 4 shows the results of the detailed evalua-
tion done in the camps and 573 (43.1 %) children
were found to be normal and 756 (56.9 %) were
abnormal. The clinical diagnosis made by various
specialists and the prevalence of various disorders
among 1,329 screen positives reported for evaluation
in descending order were: Developmental delay
(49.89 %), Speech and language delay (24.98 %),
multiple disabilities (22.95 %), intellectual disability
(16.85 %), cerebral palsy (8.43 %), hearing impair-
ment (5.12 %), seizure disorders (3.99 %), visual
impairment (3.31 %), neuromuscular disorders
(1.35 %) and autism (1.28 %).
Step 7: Child Development Referral Units (CDRUs): Four
CDRUs were set up at four taluk hospitals on a
weekly once rotation basis and the project team
consisting of pediatrician, clinical psychologist,

Table 2 Taluk wise distribution

of data on screening using TDSC Taluk Normal cases TDSC TDSC Evaluation camp
(n=101,438) 1 item or more delay 2 item or more delay

Nedumungad 26,794 1,543 952 596

Chirayinkil 17,269 2,589 828 441
Neyyattinkara 22,258 1,370 416 192
Thiruvananthapuram 7,168 1,438 281 100
Total (n=80,429) 73,489 6,940 2,477 1,329
S154 Indian J Pediatr (December 2014) 81(Suppl 2):S151–S155

Table 3 Profile of chil- multiple disabilities. The structure of each module

dren who attended DEC Characteristics No. (%)
was as follows; (a) introduction, (b) early detection,
(n=1,329)
Gender (c) diagnosis and classification, (d) home based
Boys 797 (60.0) management, (e) facility based management and
Girls 532 (40.0) (f) specialized interventions at CDC / other tertiary
Age 0–6 y centres.
<3 y 416 (31.3) Step 9: Home based intervention by mother: Based on the
≥3–6 y 913 (68.7) above ten modules education materials were pre-
TDSC pared in the local language for use of ASHA workers
Normal 458 (34.5) and parents. The mother observed the individualized
Delay 776 (58.4) therapy and was taught interventions related to her
Child not co-operative 95 (7.1) child’s disability and related problems and was en-
LEST couraged to do home based intervention using book-
Normal 361 (27.1) lets provided in local language.
Delay 922 (69.4) Step 10: State initiate on disability in Kerala: Based on the
Child not co-operative 46 (3.5) experience of this project, a State Initiative on
Disability was initiated by Government of Kerala,
which envisages early detection and early interven-
speech therapist, physiotherapist, developmental tion centres attached to each district hospital to
therapist and special educator provided further indi- begin with and taluk hospitals later on.
vidualized therapy services for 164 children, who
attended the CDRUs. They included; speech & lan-
guage disorder (33), developmental disorder (32),
multiple disability (30), cerebral palsy (19), mental Discussion
retardation (18), visual impairment (15), hearing
impairment (9), autism (5), seizure disorder (3). Rastriya Bal Swasthya Kariakram (RBSK), a major initiative
Step 8: Preparation of education materials for professionals of Government of India under NRHM, with emphasis on 4
and parents: Modules on ten common childhood Ds—defects, delay/disabilities, deficiencies and diseases, is
disabilities were prepared and published as issues being rolled out throughout the country in a phased manner.
of Teens an in-house publication of CDC Kerala. The childhood disability project supported by NRHM Kerala
The modules were the following; (i) developmental has resulted in development and validation of two simple
delay, (ii) visual impairment, (iii) hearing impair- community developmental screening tools namely,
ment, (iv) intellectual disability, (v) cerebral palsy, Trivandrum Developmental Screening Chart (0–6 y) and
(vi) autism spectrum disorders, (vii) speech and Language Evaluation Scale Trivandrum (0–6 y). In this con-
language delay, (viii) co-morbid childhood disabil- text, the present paper describing the steps needed for a district
ities, (ix) activities of daily living skills and (x) model for developmental screening at home level by ASHA
workers, confirmation of diagnosis at PHC/CHC level and
developmental therapy at CDRUs by a team of experts is a
Table 4 Clinical diagnosis by specialists strategy that is somewhat similar to the proposed RBSK
Clinical diagnosis (N=1,329) No. (%)
strategy for detection of disability [9]. But before we plan
early intervention services under district early intervention
Normal 573 (43.12) centres (DEIC), as envisaged in RBSK, it is necessary to have
Developmental delay (DDST II) 663 (49.89) reliable estimates of prevalence and type of disability at dis-
Speech & language delay (REELS) 332 (24.98) trict level.
Intellectual disability (SFB & VSMS + clinical psychologist) 224 (16.85) A nationwide survey conducted by the National Sample
Cerebral palsy (Physiotherapist) 112 (8.43) Survey Organization (NSSO) has estimated that the popula-
Hearing impairment (Pediatrician + Audiologist) 68 (5.12) tion with disability in India is approximately 1.9 % of the total
Seizure disorder (Pediatrician) 53 (3.99) population. About 3 % of 0–14 y age group is suffering from
Visual impairment (Pediatrician+Ophthalmologist) 44 (3.31) physical and mental disabilities. It was also found that most of
Neuromuscular disorders (Pediatrician) 18 (1.35) these disabilities occur in childhood. No exact picture of
Autism (DSM IV-R) 17 (1.28) disability in under-5 age group in India was obtained from
Multiple disabilities (Team diagnosis) 305 (22.95) the survey [10]. CDC Kerala conducted a study to assess the
prevalence of developmental delay, deformity and disability
Indian J Pediatr (December 2014) 81(Suppl 2):S151–S155
among 0–5 age group children in one rural ICDS block in
Kerala and among 12,520 children up to 5 y in this block,
there were a total of 311 children with developmental delay,
deviation, deformity or disability giving a prevalence of
2.5 %. In developing countries prevalence of intellectual
disabilities range from 0.29 to 2.2 % as against 0.2–0.5 % in
developed countries [11–13].
Developmental disabilities can affect one or more function-
al domains, including; cognition, movement, consciousness,
language, speech, vision, hearing, and behavior [14].
Functional limitations in those with developmental disabilities
manifest during infancy or childhood as delays in reaching
milestones of development, or as restricted function in one or
more domains. Assessment is not an end in itself, rather its
goals are to obtain useful and accurate information about a
child’s sensory-motor, cognitive, communication and social-
emotional skills, functioning and surrounding environment in
order to assist parents, health-care providers, teachers and
others to better understand, plan for and support the develop-
ment and inclusion of a child with disability. The results of this
study and the concept of ‘child development referral units’
piloted at taluk hospitals have been incorporated in the “State
Initiative on Disability” being implemented by the State
Government, with an evaluation and intervention centre at-
tached to district hospitals in 14 districts of Kerala, in a phased
manner.
Conclusions
The results of this study done in a district showed that 3.08 %
of children below 6 y had developmental delay as per two or
more items delay on TDSC. Among 1,329 screen positive
children, who attended the medical camps the disabilities
observed were: Developmental delay (49.89 %), Speech and
language delay (24.98 %), multiple disabilities (22.95 %),
intellectual disability (16.85 %), cerebral palsy (8.43 %), hear-
ing impairment (5.12 %), seizure disorders (3.99 %), visual
impairment (3.31 %), neuromuscular disorders (1.35 %) and
autism (1.28 %) in the descending order.
Acknowledgments The authors gratefully acknowledge the coopera-
tion and support received from staff of Child Development Centre,
Kerala, specially Dr. G. Suresh Kumar, Registrar; Ms. Deepa NR, PS to
Director; Mr. Asokan N, PA to Director; Suja S, Junior Programmer;
CDC, Medical College, Thiruvananthapuram, in conduction of this study.
S155
Conflict of Interest None.
Source of Funding This study is supported by Child Development
Centre, Thiruvananthapuram.
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