Introduction

In a vast country like India, the need for ensuring a healthy and dynamic future for a large populace and creating a developed agile society which is able to cognitively compete with the rest of the world is of paramount importance. The dream of such a society requires an equitable child health, early detection and comprehensive management of various health conditions in the early formative years as “what happens in early child hood can matter for a lifetime”. Hence to negate the impact of early adversity on child’s development [1–4] specially for those “at risk” of developmental delay like preterm and low birth weight new-borns, the idea of an early intervention centre linked with effective screening, evaluation and comprehensive management can be the most pragmatic initiative or rather solution at this junction. The “Child Health Screening and Early intervention services” programme under National Health Mission initiated by the Ministry of Health and Family welfare, Government of India was launched in 2013 as “Rashtriya Bal Swasthya Karyakram (RBSK)” [5]. This programme is an innovative and comprehensive initiative which aims to improve the quality of life of all children, from birth to 18 y of age, with special focus on children at risk. It has a systemic approach of prevention, early identification and management of selected 30 health conditions distributed under 4Ds: Defects at birth, Deficiencies, Diseases and Developmental delays including Disabilities ranging from birth to 18 y of age in a holistic manner. The intervention would include medical, surgical or even therapy based intervention such as physiotherapy, occupational therapy, speech & language therapy, vision therapy, behavioral therapy, psychological assessment and therapy. Such services are to be provided as per the child’s requirement which could be either at the primary, secondary or tertiary health centers including centers outside the state or even in the private sector if the government sector lacks such facility, at zero cost to the families in accordance with the principles of equity and Universal heath approach.

Rationale

The existing practice in most of the hospitals is that when children are brought to a facility, they are screened and managed only for the specific problem as perceived by the parents, while other co-existing or latent problems get usually overlooked both by the parents and the treating physician. Further, in India, children with developmental disabilities are often missed due to either failure of recognition of the symptoms or non-referral or delayed referral by the physician often with a false reassurance to the family members [6]. Large crowds, busy pediatrician, lack of detailed examination, ignorant parents with their prejudices and beliefs impede holistic screening of the child. No wonder deafness, low vision, squint, amblyopia, anemia, early child hood caries, neurobehavioral problems or developmental delay are all identified very late in life , beyond the age of critical development.

The uniqueness of RBSK program lies in the fact that screening of children has been made independent of the parents’ perception of the health problems which is usually linked to their social and educational background. Children are screened comprehensively from head to toe by a dedicated screener focusing only on screening while its management is undertaken by other specialized professionals consisting of pediatricians, surgeons and therapists who can prioritize their time and focus more on management rather than on screening.

Secondly, though we have various vertical programs like blindness control program, deafness control program and Iodine deficiency control program with specific objectives, there is a need to converge these programs as the child is one and he or she may be suffering from multiple overlapping problems. Hence, both screening and management requires a holistic approach rather than a piece meal one. Further, the continuum of care approach of RBSK envisions intra-sectoral as well as inter-sectorial linkages and coordination; Education, Social Justice and Empowerment, Women and Child Development and Department of Health and Family Welfare have equal role to play in contributing to the child’s health and development.

Thirdly, the basic principles of neuroscience indicate that providing supportive and positive conditions for early childhood development is more effective and less costly than attempting to address the consequences of early adversity later. Policies and programs that identify and support children and families who are most at risk for experiencing toxic stress as early as possible will reduce or avoid the need for more costly and less effective remediation and support programs down the road. Thus with the addition of 500 plus sick new born care units in almost every district of the country, survival of preterm and small for date children has improved but at the risk of suffering from developmental delay and disability. This is mainly in the field of vision, hearing, motor and cognition. Experience from “NICU Continuing Care Tracking Program” from 2000 to 2004 at University of Rochester, showed that 25–30 % of neonatal intensive care unit (NICU) graduates are at higher risk of manifesting with developmental delay and 14 % needed active intervention during follow up. 9.4 % required services of Occupational and Physiotherapy and 10.5 % require cognitive services including speech therapy. Similarly, hearing loss occurs in 0.7 to 1.5 % of NICU/ Specialized neonatal care unit (SNCU) graduates. A screening automated brainstem response (ABER) test or an otoacoustic emissions test when performed for NICU/SNCU graduates; there was remarkable improvement in language skills, school performance, and occupational performance [7]. Among high-risk infants, even when a normal hearing screen is obtained at the time of discharge, one needs to rescreen high-risk infants every 6 mo until the age of 3 y. Factors associated with high risk include: very low birth weight [7], SNCU hospitalization for more than 5 d, mechanical ventilation, exposure to ototoxic medications, hyper-bilirubinemia requiring exchange transfusion, TORCH infection, craniofacial anomalies, congenital syndromes associated with hearing loss and culture-positive meningitis. In short, these high risk children require a multidisciplinary team with an interdisciplinary approach for evaluation and early management to improve the outcome, instead of waiting for the developmental disability to manifest itself. Timely proactive intervention on high risk children (those surviving from SNCU or referred before the age of three years) after proper evaluation, can prevent or minimize disability.

Out of every 100 babies born in this country annually, 6 to 7 have a birth defect. In Indian context, this would translate to 1.7 million birth defects annually and would account for 9.6 % of all new-born deaths [8]. Under RBSK, the approach for birth defects has also its uniqueness. It has a component of Newborn screening to be done at all the delivery points of the country. This new born screening has clinical, instrumental and biochemical components.

  1. A.

    Clinical components consists of head to toe approach i.e., screening for Microcephaly/ Macrocephaly, Neural tube defect, congenital cataract (white pupil by torch and Red reflex through ophthalmoscope), abnormality of shape of ear, Cleft lip & palate, features of Down syndrome, Congenital dislocation of hip especially in a girl child born by breech presentation, Club foot (visible defect) and any deformity of limbs.

  2. B.

    Instrumental: Congenital deafness (Oto acoustic emission or screening ABER), congenital heart disease (Clinical features and with help of stethoscope and or use of Pulse Oximetry), Retinopathy of Prematurity through indirect ophthalmoscopy.

  3. C.

    Biochemical: Blood for Congenital hypothyroidism, Congenital adrenal hyperplasia, G6PD and for hemoglobinopathies including thalassemia and sickle cell anemia. A clinical component is for all Delivery points and instrumentation and biochemical screening for at least the district hospitals to start with. If some visible birth defect is missed at birth it can be picked up by the ASHA workers who are again being trained for this. Even if the ASHA worker misses the birth defects it still could be identified by the dedicated Mobile Health team during their biannual visits at the Anganwadi centers and lastly, delayed presentation would be picked up by the Mobile Health team during their annual visit at the schools. Thus the denominator would be the live births in that district and the numerator would be birth defects diagnosed at the Delivery points, those identified by the Mobile Health team by six years or even if identified during management at any tertiary center provided we have the record for date and place of birth. Both are supposed to be recorded in the Unique MCTS database (Mother & Child tracking Software).

The cognition is almost completed by the age of 5 y and enables the child to join school. For substantial period, under the School Health programme, most states did not have a dedicated team, specific screening tools and recording formats and it was not necessarily linked with management and specific place of referral. School health is now subsumed under RBSK and expanded to cover all children from birth to 18 y with specific age related tools, formats and comprehensive screening protocols.

Thus, RBSK is instrumental in breaking barriers to access health care for children through following approaches:

  1. a)

    Moving from survival to healthy survival through addressing high risk

  2. b)

    Bridging communication gap between the care giver and service provider

  3. c)

    Holistic approach in child examination including Birth defects, Childhood deficiencies, Childhood diseases, and Developmental delays as all are interlinked

  4. d)

    Screening services close to the community

  5. e)

    Referral linkages and free management

  6. f)

    Integrating silos and one stop approach

  7. g)

    Moving from multidisciplinary to interdisciplinary approach

Target of RBSK

When this program is fully operationalized, it is expected that these services will reach and benefit about 27 crore children annually. Different strategies have been developed to reach the target groups of children for screening of 4Ds:

  1. a)

    For new born: Facility based newborn screening at public health facilities, by existing health manpower including ANMs, Staff Nurses and Doctors at designated delivery points especially for birth defects.

  2. b)

    Community based newborn screening at home, especially for birth defects, from 48 h of birth till 6 wk of age during routine home visits by Accredited Social Health Activists (ASHAs).

  3. c)

    For children 6 wk to 6 y: Anganwadi center based screening at least twice a year by the dedicated Mobile Health teams under RBSK.

  4. d)

    For children 6 to 18 y: Government and Government aided school based screening at least once a year by dedicated Mobile Health teams.

Methodology

Methodology consists of three components i.e., prevention, screening and management.

Prevention

Preventive strategies, especially for prevention of birth defects such as immunization against rubella in a campaign mode by immunizing all children between 9 mo and 15 y of age, strategy to ensure adequate intake of folic acid during the peri-conceptional period, ensuring adequate intake of iodized salt, avoidance of alcohol, self-medication, and smoking during pregnancy, screening for diabetes during antenatal period and keeping it under control, counseling for general hygienic measures such as washing hands; cooking food properly etc.

Screening

Mobile Health team (MHT) is a four member team consisting of one male and one female AYUSH Doctor, one ANM/Staff Nurse and one pharmacist. (AYUSH stands for Ayurveda, Yoga, Unani, Siddha, & Homeopathy). Each community developmental block is supposed to have at least two dedicated teams with transport facilities and laptops. Special screening tools have also been developed for screening of children 0–6 and 6–18 y of age, in pictorial format for quick and easy identification of developmental delay, Neuromotor impairment, vision impairment, visible birth defects, cognitive impairment and dental caries etc. along with a tool kit and screening forms. Training manuals with pictorial job aids have been developed and used for training the screening teams. Screening, tracking and reporting software is to be used for data collection and analysis. When fully operationalized, it would provide country wide epidemiological data on the 4 Ds (i.e., Defect at birth, Diseases, Deficiencies and Developmental delay including disabilities) to help in future planning of area specific services or provide the fundamentals for further research.

Management

The story cannot end at screening. After screening comes the evaluation and management. Currently in a typical silo approach, the parents are forced to visit one OPD to another OPD, adding to the existing stress and end up receiving conflicting and confusing messages. The only solution could be if trained paramedical staff be made to sit at one place with the appropriate equipment, interact amongst them and give a unified message to the family. It is in this context, the idea of “Early Intervention Centres” emerged.

Thus, the management of screened children is done at three levels-Primary (PHC/CHC), Secondary (DH including District Early Intervention Centres) and Tertiary services including surgeries at Medical Colleges. The evaluation and confirmation of screened children requires a multidisciplinary team with an interdisciplinary approach placed under one roof. The District Early Intervention Centres or DEIC [9] under RBSK has trained dedicated 14 member staff to evaluate all the “high risk cases” before discharged from SNCU for vision, hearing, nutrition, cognition and birth defects if any, and at the same time provide support for confirmation of diagnosis and treatment to all referred cases. DEIC would ensure that every child born sick or preterm or with low birth weight or any birth defect is followed up. All the referrals are followed up and records are maintained. Lab Technician of the DEIC would screen the children for inborn errors of metabolism and other disorders depending on the local epidemiological situation. The DEIC would maintain linkages with tertiary care centres for surgical intervention wherever required with District Disability Rehabilitation Centre (DDRC) under Ministry of Social Justice for those cases in which disability has become permanent and with the Block Resource Centres (BRC) under Sarva Shiksha Abhiyan for continuation of care.

The DEIC is to be established over 5000–6000 sq. feet area with provision for dental care, physiotherapy, sound proof audiometry room, laboratory, vision assessment and stimulation room, psychological testing room, ECHO room, Plaster room, sensory integration room, play room , OPD room , record keeping room etc. The 14 member team consists of pediatrician, medical officer, dentist, physiotherapist, audiologist & speech therapist, optometrist, psychologist, special educator, early interventionist, lab technician, dental technician, DEIC manger and Data entry operator. The DEICs will also act as training centres for training the staff at the block and community level. Such staff need to have multiple skills (trans-disciplinary) and not limited only to their respective domains. The idea behind early intervention and DEIC is to intervene early and minimize disability. Once the disability is already established then the intervention left is to prevent it from becoming handicapped which comes under the ambit of Ministry of Social Justice & Empowerment.

A number of national training and collaborative institutions have been selected for specialised training of DEIC staff. States are encouraged to map out the service providers in each district. The RBSK program has a guideline in the form of “Procedures and Model costing for surgeries” [10] to guide in selecting indications and timing of surgeries, procedure coding through which the surgery is done, mandatory pre-operative and post-operative evidence which is to be recorded, model costing for each of the procedures pertaining to the RBSK surgical health conditions. For diseases and deficiencies, the usual referral site is the block primary health center but for defect at birth and developmental delay including disabilities, the children are referred to the DEIC.

Progress of RBSK Since Inception

Since the inception of the programme till December 2014, a total of 12.19 crore children have been screened for 4Ds from birth to 18 y.

Five thousand four hundred eighteen dedicated RBSK Mobile Health teams are in place across the country. From April–Dec 14, 4.20 crore children have been screened of which 2.104 crore (50.1 %) were male and 2.096 crore (49.9 %) were female children. Children from birth to 6 y constituted 2.13 crore (50.58 %) while from 6 to 18 y were 2.07 crores (49.42 %). 50.7 lakhs were found positive for the 4Ds. Figure 1 shows the percentage breakup of the 4Ds: 1 % defect at birth, 16 % childhood deficiencies, 49 % childhood diseases and 11 % developmental delay, including disability. 1.35 lakhs were found positive for birth defects, mostly from birth to six years and the percentage break up showed congenital heart diseases to be the commonest detected (Fig. 2).

Fig. 1
figure 1

Percentage wise distribution of 4Ds (n = 50.7 lakhs)

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Fig. 2
figure 2

Percentage wise distribution of birth defects among the nine defects screened (N = 1.35 lakhs)

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Out of these, 17.7 lakhs were referred to tertiary centres and 6.2 lakh children availed services in tertiary centres. Limitation of this data is that apart from the 30 health conditions there was a big but heterogeneous group of other conditions. When the other conditions were analysed, none of them as a single entity merited immediate inclusion from public health point of view. Similarly among birth defects, those that requiring immediate management or who have died were not included. However, once all the delivery points are linked under RBSK, we will also have data on lethal defects or defects requiring immediate intervention.

Progress of District Early Intervention Centres (DEICs)

District Early Intervention Centres (DEICs) are being established across states. Even though the process of their establishment has been a little delayed than expected, most of the states are now progressing and are in various stages of establishing DEICs. Since the endeavour involves extensive resources and efforts in terms of dedicated and trained human resources, infrastructure, equipment and inter-sectoral linkages, the challenges are huge and are decelerating the overall pace of the programme.

As per the reports 92 District Early Intervention Centres have been operationalized. The overall pace of operationalization of the programme has been slow and challenging but shall be overcome with the positivity and ownership of the states/UTs. Further, functional and structural linkage of DEICs with SNCUs is being ensured by their integration in Maternal and Child Health (MCH) wings which are being set up across states/UTs. In addition, RBSK has already been included as a certificate course in the course curriculum of Maharashtra University of Health Sciences to get it institutionalized within the medical studies. In order to manage a huge database of screened children, development of on-line MIS (Application) is under process.

Conclusions

The RBSK programme is an essential component of Reproductive Maternal New-born Child Health plus Adolescent Health strategy (RMNCH+A) [11, 12] and India New-born Action Plan (INAP) [13] which focusses on life cycle approach. Issues like defects at birth and developmental delay including disabilities have for the first time been addressed by the Department of Health including their timely evaluation and management. In coming years, RBSK would contribute a robust national and regional epidemiological data with ethnic variations, resource mapping of services and a blueprint for future planning for targeted interventions. RBSK is in harmony with Incheon Strategy of the United Nations Economic and Social Commission for Asia and the Pacific (ESCAP) “Make the Right Real” for persons with disabilities [14], and birth defects and with resolution adopted in Sixty-third World Health Assembly [15] for which India is a signatory. RBSK aims at providing continuum of care from ante-natal period to throughout childhood period. It is a step towards ‘Health for All’ or ‘Universal Health Care’ wherein children would get free assured services. RBSK is traversing an unchartered sea with some scepticism but has faith in its strength and philosophy. Let us “try to build up our country by our own strength because realisation becomes complete only through creation. Liberate us from unreasoning faith, blind habits of mind, adherence to customs that had no merit save their age, the repression of intellect and heart in the unproductive channel of inaction (R.N. Tagore).” RBSK draws inspiration from this quote and is evolving. India aims high on this approach and lessons learnt from this programme would lead to policy implications in several countries. The task is gigantic but quite possible, through the systematic approach that RBSK envisages. Implemented in right earnest, it would yield rich dividends in protecting and promoting the health of our children.