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 observed among 49.89 % children and cerebral palsy in

Objective To develop a district model for establishing early 8.43 % and intellectual disability 16.85 % were confirmed.
detection of childhood disability below 6 y of age and to Visual impairment in 3.31 % and neuromuscular disorders in
develop appropriate referral linkages for confirmation of the 1.35 were found among children evaluated in the camp.
diagnosis and establish home based early intervention therapy Conclusions The results of this district wide early detection of
to all needy children. disability survey by trained ASHA workers among children
Methods Trained Accredited Social Health Activist (ASHA) below 6 y of age showed a community prevalence of 3.08 %
workers conducted the preliminary survey for identifying observed, based on two or more item delay in TDSC and
developmental delay/disability among children below 6 y of among these children, 43.1 % were normal, 49.89 % had
age using Trivandrum Developmental Screening Chart developmental delay, 24.98 % had speech and language delay
(TDSC) (0–6 y) and a team of experts assessed the screen and 22.95 % had multiple disabilities.
positives in developmental evaluation camps conducted at
primary health centres (PHCs).
Results Community survey was carried out and 1,01,438 Keywords Early detection . Childhood disability . Delay .
children below 6 y of age in Thiruvananthapuram district were Disability . LEST
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 Introduction
conducted at 80 PHCs in the district. Among the 1,329 chil-
dren who reached the evaluation camps 43.1 % were normal. Early childhood is a crucial phase of growth and development
24.98 % children had speech and language delay and 22.95 % because experiences during early childhood can influence
children had multiple disabilities. Developmental delay was outcomes across the entire course of an individual’s life [1].
Early childhood provides children an opportunity to prepare
M. K. C. Nair (*) : P. Princly : S. Abhiram Chandran : B. George : the foundation for life-long learning, by preventing potential
M. L. Leena delays in development and disabilities. For children with
Child Development Centre, Thiruvananthapuram Medical College,
Thiruvananthapuram 695011, Kerala, India
disability, it is an important time to ensure access to interven-
e-mail: cdcmkc@gmail.com tions which can help them reach their full potential [2].
Scientific research has clearly shown that an impairment
G. S. Harikumaran Nair detected and treated at an early stage has a much better
Clinical Epidemiology Resource & Training Centre, Government
prognosis; ultimately preventing the impairment from becom-
Medical College, Thiruvananthapuram, Kerala, India
ing a disability. A Lancet series on “Early childhood develop-
M. Beena ment in developing countries”, estimated that over 200 million
National Rural Health Mission, Kerala, India children in developing countries are not reaching their full
developmental potential [3]. If children with developmental
P. S. S. Russell
Child and Adolescent Psychiatry Unit, Department of Psychiatry, delays or disabilities and their families are not provided with
Christian Medical College, Vellore, Tamil Nadu, India timely and appropriate early intervention, support and
S152 Indian J Pediatr (December 2014) 81(Suppl 2):S151–S155

protection, their difficulties can become more severe—often was administered to all the children brought to the camp by the
leading to life time consequences. two trained special educators. Denver Developmental
Systems for early identification of developmental delay are Screening Test-II (DDST-II) was administered by the devel-
required in order to facilitate timely access to services and to opmental therapists, the Vineland Social Maturity Scale
support the development of children at significant risk for (VSMS) for all and Seguin Form Board (SFB) for the needy
developmental delays [4]. Unfortunately many children with by the clinical psychologist, Receptive Expressive, Emergent
disabilities in developing countries, particularly those with Language Scale (REELS) by the speech therapist and cerebral
“mild to moderate” disabilities, are not identified until they palsy assessment by the physiotherapist. All the children were
reach school age [5]. Accurate assessment is an important examined in detail by the pediatrician and assigned a diagno-
starting point for better understanding and anticipating the sis with the test results and in consultation with the other team
needs of children with disabilities and their families. members whenever required. Ethical clearance was obtained
Assessment should be linked to intervention and should be from the Institutional Ethical Committee of Child
an ongoing process of systematic observation and analysis. Development Centre and informed consent was obtained from
In order to facilitate early detection of childhood disability the primary care givers of the children. Data was analyzed
and planning a comprehensive and sustainable early therapy using SPSS 11.0 version. For known risk factors of develop-
program, Child Development Centre Kerala, had started the mental delay odds ratio was calculated.
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 Results
childhood disability below 6 y of age and develop appropriate
referral linkages for confirmation of the diagnosis and estab- The details of steps involved in organizing this district model
lish home based early intervention therapy to all needy were as follows:
children.
Step 1: Stakeholders meeting: The community stakeholders
meeting for health care providers and NRHM Kerala
Material and Methods officials finalized (i) objectives of the project, (ii)
micro planning and (iii) strategies to get maximum
The project was initiated with a stakeholders meeting of cooperation of the community.
Thiruvananthapuram district. This was followed by develop- Step 2: Development and validation of community screening
ment and validation of two community developmental screen- tools: Two new tools namely; (i) Trivandrum Deve-
ing tools and assessment of probable risk factors for develop- lopmental Screening Chart (TDSC 0–6 y) [6] and
mental delay/disability using a structured pre-tested question- Language Evaluation Scale Trivandrum (LEST: 0–
naire administered to the parents/primary care givers of chil- 6 y) [7] were developed at CDC, Kerala and validat-
dren, who participated in the tool validation. The project was ed against Denver Developmental Screening Test
implemented with the support of NRHM, Kerala and utilizing (DDST) and Receptive Expressive Emergent
the services of trained ASHA workers, who conducted the Language Scale (REELS) respectively in a valid
preliminary survey by individual house visit and repeat visit if sample of 1,250 children of 0–6 y age group from
mother or child was not available on first visit for identifying urban, rural and tribal anganwadi areas of
developmental delay/disability among children below 6 y of Thiruvananthapuram district in 2010–11 [8].
age under the supervision of NRHM Public Relations Step 3: Assessment of risk factors for developmental delay/
Officers. Individual TDSC forms of each child collected was disability: A case control analysis was done using a
evaluated by developmental therapists (with more than structured pre-tested questionnaire administered
3 years’ experience in developmental assessment) and those among 1,204 parents of children, who participated
with two or more item delay were identified and called for the in the tool validation.
developmental evaluation camp of the concerned panchayat Table 1 shows the strength of association of
with the help of the concerned ASHA worker. The assessment known risk factors for developmental delay. Low
of the screen positives were done by the multi-disciplinary birth weight (OR:2.36; 95 % CI:1.34–4.16), neona-
project team. tal jaundice with phototherapy (OR:2.45; 95 %
Those children with two items delay on TDSC were CI:1.23–4.88), twin and multiple gestation (OR:
assessed in the developmental evaluation camps at PHC level 3.96; 95 % CI:1.31–11.98), instrument assisted de-
in a relatively quiet room in the presence of mother/care giver livery (OR:7.78; 95 % CI:1.48–40.95), breast feed-
and in a child friendly manner. First LEST and a repeat TDSC 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- at various community health centre (CHC)/PHCs of
opmental delay. Thiruvananthapuram district.
Step 4: Training programs: One day skill training programs Table 3 shows the distribution of children who
were organized in batches for ASHA workers attended the developmental evaluation camps.
(2,327), public relation officers (PROs) of NRHM Among 1,329 who attended and were evaluated in
(26), PHC medical officers (31), from the camp 60 % were boys and 40 % were girls.
Thiruvananthapuram district for screening 0–6 y 31.3 % belonged to less than 3 y and 68.7 %
aged children in the community for developmental belonged to ≥3–6 y age group. Seven hundred
delay/disability, using TDSC (0–6 y). Apart from seventy six (58.4 %) had developmental delay on
this orientation programs were conducted for TDSC and 922 (69.4 %) had delay on LEST.
Nursing Faculty (24), Supervisory Health Staffs Table 4 shows the results of the detailed evalua-
(70) and SarvaShikshaAbhiyan Resource teachers tion done in the camps and 573 (43.1 %) children
(79) for facilitating community intervention. were found to be normal and 756 (56.9 %) were
Step 5: Community screening for developmental delay/ abnormal. The clinical diagnosis made by various
disability: Community screening using TDSC (0– specialists and the prevalence of various disorders
6) was carried out by trained ASHA workers under among 1,329 screen positives reported for evaluation
the supervision of PROs of NRHM at four taluks of in descending order were: Developmental delay
Thiruvananthapuram district. (49.89 %), Speech and language delay (24.98 %),
Table 2 shows that out of a total of 101,438 multiple disabilities (22.95 %), intellectual disability
children (0–6 y) screened, 21,009 forms were in- (16.85 %), cerebral palsy (8.43 %), hearing impair-
complete or of poor quality and out of the remaining ment (5.12 %), seizure disorders (3.99 %), visual
80,429 children, 6,940 (8.63 %) had one item delay impairment (3.31 %), neuromuscular disorders
on TDSC. Out of the 2,477 (3.08 %) children with (1.35 %) and autism (1.28 %).
two items delay on TDSC, 1,329 children attended Step 7: Child Development Referral Units (CDRUs): Four
the developmental evaluation camps. CDRUs were set up at four taluk hospitals on a
Step 6: Developmental Evaluation Camps (DEC): A total of weekly once rotation basis and the project team
80 developmental evaluation camps were organized 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 S155

among 0–5 age group children in one rural ICDS block in Conflict of Interest None.
Kerala and among 12,520 children up to 5 y in this block,
Source of Funding This study is supported by Child Development
there were a total of 311 children with developmental delay, Centre, Thiruvananthapuram.
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]. References
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