Early child development services to improve social capital

About 10-12% of Indian children have any
neurodevelopmental disorders (NDDs). Many of these children miss the critical
window of intervention due to no/delayed diagnosis, lack of access to therapy. Lack
of parental awareness about the milestones, stimulation support and access to intervention
centres contribute to the burden. We propose three pronged approach: 

1. supporting parents to provide health-nutrition integrated developmental stimulation using age-appropriate tools; 
2. development vigilance for early detection of risks/damages/delays and referral; 
3. access to early intervention centers nearer to home for therapy of the children with special needs. 

These services shall be delivered through integration/linking with the existing child health-nutrition programs. The services package promotive, preventive, therapeutic with tracking of utilisation and outcome relevant for both developing and developed contexts with suitable adaptation.  The integration of health, nutrition and development components of services and better access to the centres shall improve service compliance and utilisation, thereby impact. 

In India about 12% of children (aged 2-9 years) have any neurodevelopmental disorders (NDD; visual/hearing- 3.2%; neuromuscular-3.5%; cognitive/behaviour/intellectual/learning-10.8%), several having multiple disorders. Several of these NDDs can be alleviated or disability reduced with mainstreaming by appropriate intervention.  The barriers for effective intervention are: (1) delay in detection; (3) lack of access to the support services; and (4) poor compliance. Many of these problems are either not diagnosed or detected late, losing the opportunity for intervention. Majority of the parents are unaware of the stimulation/support activities for their children for timely milestone development and avoidance of risk factors. There are limited context specific resources, tools and facilities to assist the parents of children with special needs and also for normal children. In India, the government early intervention centres are available only at district hospitals, one for a population of 2-5 million (20000-30000 under-five children with NDDs), not easily accessible for many due to distance/mobility, time, cost, wage loss and convenience reasons. Interventions for several NDDs require multiple/iterative contacts, resource/tool-based supervised practice by parents. For effective implementation of ECD services, the early intervention services should be available and accessible nearer to the homes.

Parents/caregivers need special assistance in providing adequate care, stimulation and learning for their child. There is wide variation in the knowledge, attitude and practices by parents regarding childrearing and development. Direct association between parental knowledge and child outcomes including behavioural, cognitive and motor performances have been documented. Like any professional guidance, the parents also need appropriate guidance for supporting/stimulating their children for optimal development. There is demand among parents/families for tools to improve awareness and stimulation/learning support for optimal development of their children. The availability and access to the regular and need-based tools and services is limited and costly for many. 

We are currently working with families of under-two children for integrated improvement of the health, nutrition and neurodevelopment components in urban slum areas. We propose targeting the under-five children without any NDD (regular development stimulation support), at risk for NDD (with risk-factors- biological/environmental/acquired) and with established NDDs (delays/disabilities requiring interventions) and their parents/family for improving the neurodevelopment capital and improving outcomes/reducing severity/secondary handicap.

The services will be available for children of both gender, urban and rural areas and all socioeconomic strata. These services will complement the existing public health, child development and pre-school education program.

We propose the solution with two packages: (1) Part 1: Enabling parents/family and community health functionaries for better care and stimulation of their children and development vigilance; (2) Part 2: Improving access and delivering the early interventions for children with developmental delays/disabilities.

Package 1 aims at furthering the neurodevelopmental potential of the children through age-and development-appropriate stimulation, nutrition, health care seeking and risk avoidance measures plus vigilance for delay in development or disabilities. It expects to cater to all children including those at risk for NDDs. This package shall be delivered through the community health and child-development functionaries (ASHA- Accredited Social Health Activists and ANM- Auxiliary Nurse Midwives from Health and AWW- Anganwadi Worker in India) at home, clinic and anganwadi contact levels using age-appropriate tools (audio-visual and printed) for demonstration. We propose for 12 contacts (year 1: 4 and years 2-5: 2 annually) with the child and parents for normal and 20 contacts (quarterly) for the at-risk children during five years for counselling and demonstration of using age-and development-appropriate tools and activities. The tools and activities will focus on feeding (breastfeeding/supplementary feeding), vaccination, illness care seeking, anthropometry (weight, length/height), development (parenting, social-play, cognitive, sensorimotor, speech, language) and learning (reading, writing, comprehension, etc.) as appropriate for the ages. During these contacts, the functionaries will document the status of various development domains for vigilance and identification of at-risk children. Any child with emerging delay/disability will move to the at-risk category with change in contact frequency. The contacts with the ASHA, ANM and AWW can happen at home, clinic/VHNDs, anganwadi level. For the additional contacts by the ASHAs, nominal incentive shall be provided.

Package 2 aims at providing the early intervention therapy for the children with developmental delays/disabilities through the Satellite Early Intervention Centres (SEICs) linked to the DEICs. These SEICs at Block level (~100000 population) shall be equipped with stimulation materials and therapy tools to support the children requiring behavioral and occupational therapy, physiotherapy and family counseling services. A team of two development workers trained at the DEICs/skill development centers shall operationalize the SEICs. The children diagnosed with delay/disability and advised for specific intervention/therapy at the DEICs or special centers can continue their therapy at these SEICs, which are nearer to their homes, improving access and compliance, thereby the outcome. These children can attend the DEICs periodically for further assessment and appropriate modification in therapy plan.

The intervention package works on the principle of continuum of care for optimal child development, integration with health and nutrition services and improving access for improved acceptance and compliance.

Package 1: The package integrates the child development stimulation with immunization, nutrition and health care-seeking services for under-five children delivered through the existing functionaries. Several of the proposed contacts (6 of 8 contacts in first 2 years) coincide with the schedule of home visits or vaccination, as per the existing program. The proposed contacts during second to fifth year shall leverage the pre-school education at anganwadis. We propose equipping the functionaries (ASHAs/ANMs/AWWs) with skills and audio-visual/pictorial tools (age-and socio-culturally appropriate) on tablets for effective communication/counselling/demonstration of the activities. The mobile application shall allow capturing the nutrition, health and development status of the children at each contact. We hope that the informed parents/family shall create a stimulating home environment. Apart from the integration into child health-nutrition program, the tools/materials can be accessed by the parents directly for self-reading/practice and health-nutrition-development vigilance of their children.

Package 2: Availability of SEICs nearer to homes linked to DEICs will enable parents/families to access the early intervention therapy for children and improve compliance. The interventions/therapies/support for the established/diagnosed delays/disabilities at DEICs/other centres can be continued at the SEICs with supervision/support from the development workers using the recommended guidelines. The intervention tools/guidance materials shall be available for parents through mobile application for continued use/practice at home. The mobile app shall capture/track the periodic assessments at SEICs/DEICs.

For the Package 1, the context-sociocultural-appropriate behaviour change management (BCM) tools (audiovisual/pictorial/interpersonal) shall be developed directed at improving parenting behaviours and child stimulation practices integrated/linked with health, nutrition and pre-school education. Access to these tools/materials by parents/families through the community functionaries and also self-reading/practice will improve the compliance.

For the Package 2, the SEICs enable penetration of and access to the early intervention therapies beyond the district centres. The demonstration and access to the intervention tools (audiovisual/pictorial) for parents to practice at home will improve compliance and the impact.

These audiovisual/pictorial tools/interpersonal communication tools will serve as job-aids for the functionaries at community/SEIC level for better service delivery.

The mobile and web applications for these packages and data architecture shall use the open-source platforms including android, Php, java, etc. These tools shall also allow capturing data on contacts, development vigilance, milestones achieved, identification of at-risk/delayed/disabled children for timely referral and diagnosis, standardised interventions, effect of interventions and performance of the functionaries/SEICs. The overall packages primarily use behavioural designs for delivery of BCM tools and components. Social network (parent/peer-groups) at community level shall further assist in practice adherence. All these data provide an opportunity for big data and analytics, when scaled up for larger area (state/national). Further for data validation and quality checks, we may use the blockchain technology. Later artificial intelligence and machine learning tools shall be used for early identification of the children in-need for intervention and tracking for impact. 

We hope that the two packages shall address the key problems related to child development and related health, nutrition in India and several developing countries. The theory of change proposed for the intervention and packages are shown in figure.

We are implementing the part of proposed Package 1 (1000 days- pregnancy and first 2 years) for 450 families covering about 80000 populations over next one year. The proposed Packages 1 and 2 if supported shall be implemented in a district covering about 0.5 million population with 10000 infants born annually. Considering coverage of about 50-60%, we expect to cater about 5000-6000 infants in first year with Package 1 services. We expect that the SEICs (Package 2) shall cater to about 500-750 children with delays/disabilities requiring early intervention over first year (considering coverage/attendance of about 40-50%). Over five years, we expect to cover 30000-40000 children with Package 1 and 3750-4000 children with Package 2. Also we expect to identify about half of the children (2500 children) at-risk or with delays/disabilities earlier and refer for evaluation.

During the first half of the year, we hope to develop the tools (audio-visual, pictorial), guidelines for functionaries and parents for using the tools, develop the mobile and web platform to host, develop the SEICs and operationalise the packages. Over the next half of the year, the pilot implementation of the packages using the tools, mobile and web platforms at community level and SEICs shall be done. Any refinement needed shall be done based on the experiences/feedbacks. Full-fledged implementation shall be undertaken during subsequent years for both packages coupled with the performance documentation using the indicators.

Simultaneously engagement and advocacy with the government, professional bodies and social activist organisations shall be undertaken to improve the awareness at all levels and potential translation into the policy and program integration. Also engagement with the Indian Paediatric Association, academics, private paediatric and child development practitioners, shall be done to promote usage of the packages in private sector.

Social media campaign and publicity efforts shall be undertaken to generate public awareness on the child development needs for increasing demand. Advocacy with the playschools and creches shall be done to further spread the awareness and usage of the tools by parents.

We plan for incorporating artificial intelligence and machine learning algorithms using the data collected for the infants/children from various districts to identify the at-risk children, prediction and prognostication models for the outcomes of interventions for various conditions using the packages.

The barriers for the proposed interventions include: (1) acceptance of the government for inclusion in the program; (2) availability of tools and interventions for delays/disabilities suitable for Indian context (language and resources); (3) skills of the functionaries at community and facility levels; (4) awareness among the parents/community and professionals and (5) financial and resource gap for development, implementation of the packages. There is also limited information about the market, purchase capacity, decision making factors and price index for such packages.

The team at INCLEN and its partners at the academic institutes are working closely with government and its child health and child development programs at state and national level for long time. Two projects on child development using interventions and assessment of various existing interventions are operational in two states. The existing linkages with government shall assist in obtaining approval and linkage with the child health, nutrition and development program. The tools proposed shall be in alignment with the existing child health and development program guidelines/activities, which shall increase acceptance by the government. The tools and protocols for interventions for delays/disabilities shall be adapted by the experts for Indian context (language and resources) in alignment with the DEICs and other centres in India. The skills of the functionaries at community and facility levels shall be upgraded for using the tools using training modules developed/adapted. The efforts for generating/improving awareness among the parents/community and professionals shall be undertaken using various channels (social media, print media, handbills, posters, professional meetings). The team shall work for fund generation through grants, donations (corporate and individual) and user-charges for use outside the public sector.

The solution team is part of The INCLEN Trust International, a not-for-profit public health research organisation. INCLEN has a wide spread network of 84 units based at medical schools across 34 countries. Apart from these core units, INCLEN has been partnering with suitable institutions in India and abroad across different contents for research and implementation activities. The Executive Office of INCLEN is based at New Delhi, India. In India INCLEN has  employee base of 217 staffs working on several projects.

A team of six full-time staff (including public health, public health, psychologist), one part-time (child development) and five honorary child development experts are working on the ongoing project for first 1000 days. Additionally 50 anganwadi workers and 50 ASHAs are delivering the package to parents/families at community level. The team is working with the national program on child development promotion, detection of delays, disabilities and deformities, Rastriya Bal Suraksha Karyakram (RBSK). 

INCLEN has a multidisciplinary team with paediatrician, child development, public health, psychology, information and technology, data management, monitoring & evaluation, biostatistician. INCLEN is working with the technical experts in India on child development, paediatric neurology, child psychology, and intervention specialists for various disabilities, public health program practicing at various medical colleges and child development centres.  The team’s working relationship with the national program on child development promotion, detection of delays, disabilities and deformities, Rastriya Bal Suraksha Karyakram (RBSK), shall also assist in alignment and implementation of the proposed intervention. INCLEN has experience in undertaking such community based implementing research programs. The added research competence and credibility shall assist in buy-in and dissemination of the findings for further translation.

INCLEN has been networking with several medical colleges (clinical academics and research) and other public health research organisations apart from government departments for implementation of the projects of program and policy relevance. We work on principles of corporate collaboration and shared responsibility for implementation of the project activities and achievement of goal. For the currently ongoing projects, we have ongoing projects with about 35 medical colleges, laboratories in India and additionally about 15 institutes outside India. In past INCLEN has worked with about 236 medical colleges in India on several projects.

We propose adopting a mixed business model: (1) approaching and pursuing for inclusion of the packages within the government for free access to the services; (2) user-fee model when the clients and practitioners wish to access the SEICs and the tools with payment of fees from services; and (3) charity fund raising through donations (individual/corporate) to make them sustainable. When the packages and tools are used by the government delivered through the community and SEIC functionaries, the operation cost shall be covered by government funds. The parents and private practitioners who are not accessing/using the government services shall be allowed to access the package(s) with user-fees. The linkages with development intervention specialists and functionaries for the private sector shall be useful value addition. The intervention/solution being a social welfare intervention, donations from individuals/corporates are also expected for charitable purposes. These multiple approaches for the solution are expected to make it sustainable. The SEIC development worker cadre development shall be linked to the skill development program of Human Resource Ministry, Government of India. A public and private sector SEIC opportunity shall make the young candidates interested in the cadre.

We expect that the package development shall cost about USD 30,000-50,000. Each SEIC establishment shall cost about USD 3500 and operations would cost about USD 7,500 annually. For monitoring and continued technical support in a district, we need another USD 25,000 annually. Over next five years, we expect about USD 400,000 for operationalising five SEICs in a district. We expect to generate funds through government support, grants, donations, corporate social responsibility funds and user-fees for generating the desired funds.

We are applying to gain access to the larger funding environment from the various grants, donations and endowments at global, regional and national levels. We hope that the Solve team, facilitators, collaborators and mentors shall be able to guide the team to develop and refine the social innovation and business model along with the fund raising options. The Solve stage is expected to give visibility and also credibility for the team to approach various funding sources.

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We would like to partner with organisations supporting and facilitating development/ refining various social business models in Indian and other developing country contexts. Also we would like to partner with the social enterprise incubators for obtaining the technical and possible financial support for furthering the ideas/solutions/packages.

We plan for creating a big data platform pooling the data collected for implementation of the packages in various districts, as it is scaled up. We also plan to use artificial intelligence and machine learning algorithms to detect the at-risk children for early identification of delays/disabilities and facilitate referral to the intervention centres. For the children with established delay/disability with various compliance levels for the interventions, tracking the progress and outcome intervention package would help in developing predictive models for prognostication.

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