EARLY INTERVENTION THERAPY FOR CHILDREN WITH DISABILITIES

There are 54,000 children (age 0-6) with disabilities / delayed development in rural Tamil Nadu (state in India). There is a lack of access to early intervention (EI) therapy services for these children due to a lack of trained professionals and programs in rural areas and long transport time to urban areas where such programs exist.We have trained community rehabilitation workers (CRWs) to provide early intervention therapy and guided by rehab specialists.To provide access to therapy by using CRWs to provide therapy to a child in their own homes with the goal of improving children development and supporting their parents. CRWs are guided and monitored by rehabilitation specialists through the use of the mobile Village Based Rehabilitation Initiative (mVBRI)  app on their smart phones.This solution can be scaled up Bangladesh as it helps overcome the lack of rehab specialists and leverages mVBRI to connect CRWs and Specialists to provide therapy in a child’s door step.

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.  

Rehab specialists (physiotherapists, occupational therapists, speech therapists and special educators) do the initial assessment of a child and input their findings into the mVBRI app and set specific treatment goals and therapeutic protocols to be followed. CRWs provide therapy once per week for each child in their home and rehab specialists visit each child once per month through joint visits with the CRW. These joint visits not only provide therapy for their child, but provide training for CRWs and parents. Rehab specialists track the progress of children with standardized developmental tools (for gross motor, cognitive, self-care, mobility, speech) embedded in the mVBRI app and re-input new goals and therapy plans every 6 months. Family centred therapy is the focus, whereby caregivers set their goals for the child therapy and parents are trained in working with their children and providing them therapy.

Amar Seva Sangam's Early Intervention 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, Orthopedic Disabilities, Autism,  Congenital Disabilities and any other causes of developmental delay. 

1. To screen all children in our surrounding rural community age 0-6 for  cerebral palsy (CP) and other developmental delays / disabilities.
2.  To provide a diagnosis for children screened as having delayed development, inlcuding making a definitive diagnosis of CP. 
3. To provide early intervention therapy for rural children identified with CP and other disabilities and improve their development, empower their families, reduce caregiver strain and integrate these children into school and society. 
4. Improve awareness in the community regarding childhood development, disabilities, and early intervention therapy. 
5. The program provides early intervention therapy to these children in different domains of development including motor, speech, cognitive / educational, self-care / activities of daily living, emotional, behavioural and mobility.
6.  In addition, the program aims to empower parents, reduce their strain and improve their interactions with their children by providing them psychological support and training them on how to provide therapy to their own children and how to work with their special needs children in daily activities.  

• 36,987 children screened for delayed development.
• 1102 children have received early intervention therapy.
• 1858 health workers trained.
• 24,635 people have improved awareness on child development 
• caregivers supported in the program with 74% showing decreased strain, 75% having increased empowerment and 62% having improved child interactions.
• 75% of children in our program are enrolled in school by age 5.

We have designed and created the mobile Village Based Rehabilitation Initiative (mVBRI) app and installed this app into all field staff tab. Rehab specialists (physiotherapists, occupational therapists, speech therapists and special educators) do the initial assessment of a child and input their findings into the mVBRI app and set specific treatment goals and therapeutic protocols to be followed. CRWs provide therapy once per week for each child in their home and rehab specialists visit each child once per month through joint visits with the CRW. Rehab specialists track the progress of children with standardized developmental tools (for gross motor, cognitive, self-care, mobility, speech) embedded in the mVBRI app and re input new goals and therapy plans every 6 months. 

mVBRI application modules are: Screening module: data is captured for all children screened in the community for delayed development,  using the TDSChart 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.

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 in free of cost. 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. 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.  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. 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 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.

1. Currently, 40,733 children in the community were screened for delayed development. 
2. 1102 children with delayed development and their families have received early intervention therapy through the program.  87% of booked visits were completed.
3. 39,423 people in the general community have improved awareness on child development, disability and cerebral palsy as a result of our community awareness programs.
4. 75% of children in our program are enrolled in school by age 5 compared to 55% of children with disabilities in the rest of Tamil Nadu.
5. 74% of care givers had decreased Caregiver Strain, 73% had improved Family Empowerment  and 62% had improved caregiver - child interaction when measured using validated tools.

Future Plan:

1.Enroll 2100 delayed development children in 23 new blocks in 2 District for 1 year into early intervention therapy program with funding from Government of Tamil Nadu and Grand Challenges Canada.

 2. Over the next 5 years, Govt of Tamil Nadu will start funding other NGO to implement this policy, so that more rural children with disabilities can access home based early intervention therapy. And Implement 

3. Our goal is to reach all children with delayed development in the state of Tamil Nadu by 2030(54,000)

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. 

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The problem is that children in non-urban areas  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. In Disability in Bangladesh there are an estimated 16 million people with disabilities in Bangladesh, or 10% of the country's population. If we will be implementing our solution to Bangladesh then thousands of developmental delay children and their family will be getting empowered.

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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 Tiger IT Foundation 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. We are planning to 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. 

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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.