Mobile Village-Based Rehabilitation-Initiative

According to the WHO, “If children with development delays are not provided with appropriate early intervention, their difficulties can lead to lifetime consequences, increased poverty and profound exclusion.”  Currently in Tamil Nadu, India, there are 102,600 children with disabilities in age 0-6. 85% of children have no access to EI therapy because of a lack of rehab specialists in rural areas and long distance to urban EI centers. Amar Seva Sangam’s (our NGO) solution is to provide therapy for children in their own homes through Community Rehabilitation Workers (CRWs). CRWs are guided and monitored by rehabilitation specialists through an app we have developed called mobile Village Based Rehabilitation (mVBRI). This solution can be adopted globally as it helps overcome the lack of availability of rehab specialists in rural areas and leverages technology to connect community workers to specialists to provide therapy in a child’s own home. 

The prevalence rate of children below the age of 6 with disabilities both globally and in India is 2.5%. The latest census data reveal that there are 102,600 Children age 0-6 with disabilities in Tamil Nadu state of India. Currently, the Government of Tamil Nadu operates 32 Urban District Early Intervention Centres, in which 14,500 children with disabilities receive early intervention (EI) therapy free of cost.  The remaining 88,000 + children have no access to EI therapy because there are no programs that offer Early Intervention services outside of these urban areas. The lack of services are due to a shortage of rehabilitation specialists in rural areas. In addition, the wide geographic distribution of children in rural areas would make it challenging for children to access therapy even if EI centres were established in rural areas. Many of these children have mobility issues and public transportation in India is mostly non-accessible to people with disabilities, compounding the issue. 

Therefore, bringing therapy to a child’s own home and through CRWs with GPS monitoring systems and guided by rehabilitation specialists provides a high fidelity solution that can be accessed by all rural children.

Amar Seva Sangam is working with children under the age of 6 with delayed development / disabilities including Cerebral Palsy, Intellectual Impairments, Speech, Language & Communication Delays, Hearing and Visual Impairments, Orthopaedic Disabilities, Autism,  Congenital Disabilities and any other causes of developmental delay. Our program is inclusive of all children with disabilities with the goal of providing them early intervention therapy in all domains of development to maximize their development so they can reach their full potential. We also work closely with caregivers of children and provide them with education and training to enable them to provide daily therapy, foster positive attitudes, increase knowledge of disability, increase confidence in caring for their child in order to reduce caregiver strain, promote family empowerment and positive interactions with their child. In addition, the program provides psychological support and networking opportunities with other families with disabled children. Our program is family-centred whereby caregivers set developmental goals for their own child which guides the therapeutic plan.  The chief benefit is their specific needs are met, which might not be known or obvious to therapists. In addition, parent participation groups are formed and these are important stakeholders in feedback, decision making and guiding the program.

We hire and train local women in the community to become Community Rehabilitation Workers (CRWs) through a 2 week intensive training program. All children in our surrounding community age 0-6 are screened for developmental delays in primary health centers and nursery schools by our team of CRWs and village health nurses, using a validated tool in our mVBRI app. Children that are screened positive for delayed development are assessed by a multidisciplinary team of rehabilitation specialists (physiotherapists, occupational therapists, speech therapists and special educators) who provide a diagnosis and input their findings into the mVBRI app and set specific treatment goals and therapeutic protocols to be followed.  These children are enrolled free of cost into the program and CRWs follow the therapeutic protocols set by the specialists and provide therapy in all domains of development including physical, speech, cognitive and functional and provide support and coaching to parents. Therapy is provided by CRWs once a week in a child's own home and by parents for rest of the days. Rehab specialists visit each child once in a month through joint visits with the CRW where they not only provide therapy for their child, but also provide expert guidance to CRWs and parents. Rehab specialists review progress of children with standardized developmental tools (for gross motor, cognitive, self-care, mobility, speech) embedded in mVBRI app and re-input new goals and therapy plans every 6 months. CRWs can communicate with specialists regularly to problem solve any issues in a child’s therapy. They share videos and photos of the child or even do video conference with rehab specialists if need arise. The mVBRI app has GPS connectivity with which travel and therapy timings are monitored by the management team. Focus on family centered therapy helps families to set goals for their child using the Canadian Occupational Performance Measure and family outcomes including caregiver strain, empowerment and child-parent interaction are measured every 6 months using validated tools. Community awareness programs are conducted for schools, women and public by way of workshops on child development, disability, and gender and child disability rights. Training programs are provided for CRWs, rehab specialists and parents. In addition to initial CRW training, 10 day workshops are given every 6 months to enhance their skills. Continuing rehab education opportunities are provided for rehab specialists. Parent empowerment and training workshops are conducted every 6 months.

Currently, the only early intervention (EI) therapy that is available in Tamil Nadu and the rest of India, is center based programs where therapy is provided by rehabilitation specialists. Our program is the ONLY high fidelity home based early intervention therapy program in all of India. It is innovative because therapy is provided by community rehabilitation workers without specialized training, but since they are guided by rehabilitation specialists through the mVBRI app, child outcomes are robust and provides cost effective rehabilitation at the doorstep of the child. Our longitudinal cohort study comparing outcomes for children in center-based (therapy provided by rehab specialists) vs. home-based (therapy provided by CRWs guided by rehab specialists through the mVBRI app) showed no statistically significant differences in developmental scores between the two groups. School enrollment for children age 4 and above and family empowerment as measured through a validated tool called the Family Empowerment Scale was significantly higher for children in the home based group compared to the center based group. In addition, costs are significantly lower in our home based program with our program costing $290 USD per child year while Govt EI centres in Tamil Nadu cost $1103 USD per child per year.Our program has a robust monitoring program through the mVBRI application including GPS enabled technology that allows tracking of workers travel and therapy times, child developmental scores and caregiver outcomes. The program dashboard provides the management team with real-time feedback and allows for monitoring and evaluation of outputs and outcomes

The key component of our model is the mVBRI application which contains different modules.Screening module: data is captured for all children screened in the community for delayed development,  using the Trivandrum Development Screening Chart which a validated tool to screen children for  disabilities. Baseline module: all children screened positive for delayed development are assessed by rehab specialists who input their findings including demographics, development and medical history and developmental disability diagnosis.Therapy module: contains the identified problems, goals and therapeutic plan which is inputted by rehab specialists and seen by CRWs who implement the plan. This is modified every 6 months. Child monitoring module: children’s development scores are inputted using validated developmental tools including the GMFM (gross motor), WEEFIM (cognitive, self-care, mobility), COM-DEALL (speech), COPM (parents therapy goals), FES (family empowerement scale), CI (child interaction), MSCI (caregiver strain) and FACP (special-education). This is assessed every 6 months by the rehab specialists. The data collected in this module is used to monitor progress of children and evaluate outcomes. Therapy monitoring module: travel time, therapy times are collected using GPS-enabled technology and allows for monitoring of visit compliance for both child and any particular worker.Awareness Module: contains the important information needed for CRWs to conduct community awareness program that focus on child development, disability and gender and disability rights. The app also collects pre and post test scores for program participants.Education module: contains different clinical and therapeutic resources for CRWs and can be shared with parents during therapy visits.

The problem is that children in non-urban areas of Tamil Nadu have no access to early intervention therapy. This leads to children not being able to maximize their development potential and a lack of support for parents, many of whom are from low socio-economic backgrounds and who are struggling with managing a child with a disability.

Our program provides a solution because it provides access to children living in rural areas with early intervention therapy, has shown to improve child development and empower caregivers.

We have reached 1102 children with an average family income of $797 USD, with 50% of families below the poverty line.

Our monitoring and evaluation of the program has revealed high engagement with 87% of therapy visits booked being completed. With the assistance of a third party research consultant – University of Toronto’s International Centre for Disability and Rehabilitation – we have mapped the developmental trajectories of children in our cohort in various domains of development and showed that it matches or exceeds the trajectories seen in other studies in middle and high income settings. Improved development has led to increased school enrolment with 75% of children in our cohort attending school by the age of 5, compared to 55% of disabled children in the rest of Tamil Nadu.  We have also showed improved caregiver outcomes with 73% of caregivers having improved family empowerment, 74% showing reduced caregiver strain and 62% showing improved caregiver–child interaction, as measured through validated scales.

Since the inception of the program in Oct. 2014, we have provided EI therapy and family support for 1102 children with developmental delays.  In total, we have screened 40,733 Children for Delayed Development, trained 1919 Health Workers (Village Health Nurses and Anganwadi / Nursery School teachers),  improved awareness about child development and disabilities for 39,423 people through community awareness programs and created 127 jobs of which 117 were for women.

  Currently, there are 743 children actively enrolled in the program.

  By 2020, we will have 3000 children actively enrolled in the program.

  By 2025, we will have 50,000 children actively enrolled in the program.

  This will be achieved through a government and grant funded scale up plan that has been established and will be scaled up further (described below).

We will be receiving matched funding from Govt. of Tamil Nadu Disability Dept and Grand Challenges Canada (GCC) to expand the program to cover 2 full districts and enroll 2100 new children with delayed development, for the year 2020. Our NGO, Amar Seva Sangam (ASSA) will hire staff, provide training and conduct the entire program just as we have done earlier. The plan is for the Govt of Tamil(TN) Nadu Disability Dept to continue to fund ASSA to run home based Early Intervention in the 2 districts after the conclusion of GCC funding starting in 2021. They will use this model and the evidence gathered up till 2020 to advocate to the Planning Commission of TN to fund the program in other districts and thus providing scalability.  How will we reach the other districts after 2020? We will assist the Govt of TN to recruit other NGOs and the govt will fund them to conduct mVBRI supported Home Based Early Intervention in the districts they work in. ASSA will be the training partner in getting the NGOs on-boarded and trained in clinical and operational aspects to conduct home based Early Intervention. NGOs across Tamil Nadu will be gradually on-boarded and by 2030, we hope to have all children with delayed development in Tamil Nadu (over 100,000) receiving early intervention therapy. Throughout the next decade, we will also spread this innovation to other states in India and other low and middle-income countries so that millions of children can benefit.

1. One of the barriers is the current cloud based data storage platform we are using may not scalable. We are using Salesforce as our data storage platform. Two major issues that arise from this is that the cost is high and that the storage is occurring outside of the country which will be a barrier towards government funded scale up of the program, as legal issues regarding data storage outside the country may arise.
2. The other barrier is being able to recruit NGOs to conduct the home based Early Intervention program and ensuring the fidelity of the program is not comprised. 

To overcome barrier (1), we are upgrading the mVBRI app to an open source platform. The server can be as preferred by the agency where it will be in compliant with the local data protection laws.

To overcome barrier (2), we will need to establish ASSA as a Tamil Nadu State Level – “Home Based Early Intervention Training cum knowledge center”. This center will be staffed with leaders who will connect with, recruit and onboard other NGOs and act as a liaison between them and the Govt of Tamil Nadu for funding. In addition, this center will establish training and resource material and hire operational and clinical trainers so that the training of other NGOs can occur. This center may also need to take on the capacity of a monitoring and evaluation center to monitor other NGOs to ensure that treatment fidelity is not comprised. 

These activities are all planned during the next 2 years.

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We have 104 full time staff, consisting of 94 clinical staff (Community

rehabilitation workers, rehab specialists) and 10 management and admin
staff. We have 7 contractors (2 software support contractors, 4 research
consultants from University of Toronto and 1 resource material
developer).

Our team is headed by 2 internationally recognized advocates for people with disabilities who have a lived experienced of this issue. The president of Amar Seva Sangam, Mr.Ramakrishnan, (2007 CNN International Hero winner), has a C3 spinal cord injury and the Honorary Secretary, Mr.Sankara Raman, Charter Accountant (winner of the Prestigious Dr.Ambedkar Award from The President of India), has muscular dystrophy and they understand the importance of early childhood therapy and support. Our remaining team has extensive experience in childhood early intervention therapy and consists of physicians, physiotherapists, occupational therapists, speech therapists and special educators with over 50 years of clinical, research and education experience.  In addition, our team has IT, communication and finance experts and members of our team sit on important government disability and advocacy committees which give us a prominent voice in the disability sphere.

Our funding partners consists of Grand Challenges Canada, Azim Premji Philanthropic Initiatives, Handi-Care Intl., City Union Bank, Next-GEN, Vodafone Foundation and NASSCOM.

Our research partners for monitoring and evaluation are University of Toronto’s International Centre for Disability and Rehabilitation, McGill University’s Global Health Rehabilitation Initiative and Kalasalingam Academy of Research and Education. Each of these partners has taken on different monitoring and evaluation questions and we share non-identified data with them which they analyze and provide us with reports for.

Amar Seva Sangam is a not for profit NGO that works with the most marginalized and impoverished communities of people with disability. Therefore, we provide the home based early intervention services free of cost and have been funded through grants and private donations. Our key beneficiaries are children with disabilities who we provide early intervention therapy to and their caregivers who we support and train. We will scale up this program through a public sector model funded by the Tamil Nadu Govt’s Disability Dept which we have established a partnership with.

Our financial model is the Low Income Client as Market Model in which our clients – children and with disabilities their families have been provided early intervention therapy free of cost as most families we serve have low incomes and from rural areas. We have raised money to operate this program through grants and donations thus far. This will be become a public sector model with the Govt of Tamil Nadu coming on board to be a matched funder along with Grand Challenges Canada for the next level of scale up of the program in 2020 in which 2 full districts will be covered with 2100 children enrolled in the early intervention program. After 2020, the govt of Tamil Nadu has indicated they will take on full funding of the 2 districts we will be working in and scale up the program by funding other NGOs to operate the same mVRBI supported early intervention therapy program in other districts of the state. 

The major barrier we think that Solve can help us overcome is transitioning our data storage to open source platform to make it more cost effective for scaling up by Govt and other NGOs. The other barrier is hiring the correct talent to establish Amar Seva Sangam as the state level home based early intervention training and monitoring center for other NGOs that will be implementing our mVBRI enabled home based early intervention program model. 

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We would like partner with other NGOs, particularly in Tamil Nadu who are interested in implementing mVBRI supported home based early intervention therapy using our model. Though, the govt of Tamil Nadu has expressed interest in funding the scale up of the program to the entire state, we would like to partner with global funding agencies such as World Bank, UNICEF and WHO to ensure sustainable funding for the future scale up plans.

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Our program enrolls boys and girls without any discrimination based on gender, religion, caste, socioeconomic status or type of disability. We provide equal access to screening and therapy enrollment for both boys and girls.  However, our program has enrolled 64.5% boys and 35.5%  girls since 2014. The literature on early childhood disability does note that incidence of delayed development is higher in boys than girls, including the incidence of Cerebral Palsy (the most common condition in our cohort) being 30% higher in males than females globally.  

However, anecdotally, we hear about greater stigma for families with a girl with disability which may lead to a lower enrollment rate for girls with disabilities into a home based early intervention program. We have not formally or rigorously studied the reason for gender discrepancy in our cohort.  We would use the grant from Innovation for Women Prize, to formally study and research stigma associated with girls with disabilities and what the barriers are for their enrollment in home based Early Intervention therapy in the areas we work. This study would lead to formal action items that can be undertaken by our program to increase enrollment of girls with disabilities into early intervention therapy, better support families with daughters with disabilities and reduce stigma.

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