Amar Seva Sangam

Our innovation brings rehab services to children with disabilities in their own homes, ensuring access in remote and rural areas in low resource settings in Low and Middle Income countries with the help of community workers, smart phones and the Enabling Inclusion™ app we have created. The results from our innovation have shown high impact and cost savings while maintaining high quality services prompting us to scale-up through government and non-government partnerships globally through our new social enterprise. 

The Elevate Prize will take us to the next level and allow us to scale-up further, bring transformative system change and elevate humanity. The Elevate Prize will amplify our innovation, build connections and provide access for new partnership development, and will bridge the funding gap to accelerate our global scale-up vision.  We will utilize this fund to make the newly established social enterprise sustainable with business processes and institutional framework for marketing and partnership building, technology, training, impact evaluation, research and innovation, with continuous development and improvements, as we scale-up. 

The prize will allow us to realize our dream that no child should be denied rehab services and school experience because of their disability.

When I was 3 years old, I lost the ability to walk and was diagnosed with muscular-dystrophy.  My parents focused their energies in getting me a good education despite the fact that society was unable to support or accommodate my special needs. I became a Chartered Accountant and had a blossoming private practice. In 1992, I left this practice to become the co-lead of Amar-Seva-Sangam, a non-profit-organization that annually benefits 20,000 people with disabilities of all ages in India.

In 2014, we created a solution called Enabling Inclusion™ (EI) that leverages technology to provide rehab services to children with disabilities in “unreachable areas” of rural-India. The EI™ solution and app has benefited thousands of children and has won global recognition, resulting in strong demand to replicate this solution nationally and globally.

In 2020, we formed a social enterprise, Amar-Seva-Global-Association with the goal of reaching hundreds of thousands of children with disabilities with partner organizations globally through licensing of the EI™ app and supporting them as knowledge partners.

Our vision is an inclusive world in which children, families and communities are given the resources that allow all children with disabilities and their families to reach their full potential.

A young mother living in a rural village has a nine moth old girl, but unlike other children of her age, she has yet to roll over or even grasp an object.  This child needs Early Intervention therapy, but she simply lives too far away to access these services.

 According to the WHO, “If Children with Disabilities (CwD) and their families are not provided with timely and appropriate early intervention, support and protection, their difficulties can become more severe, often leading to lifetime consequences, increased poverty and profound exclusion."

Globally, there are up to 150-million children with disabilities (UNICEF) and 90% of them in the Low-Middle-Income countries (LMIC) have NO access to child rehabilitation services (UNESCO). In India, there are 7.8 million CwD, of which nearly 2.3 million children are under the age of 6.

 In LMICs, access to child rehab services for families is very limited due to shortage of rehabilitation specialists, lack of services in rural areas, inaccessible transportation and high costs of receiving services in urban clinics.  In LMICs, governments are unable to reach the last mile because of high costs associated with setting up rehab clinics in rural areas which is the established method of service-provision. 

Enabling Inclusion™ (EI) is a solution that reaches children with disabilities by connecting community workers to rehab specialists using the EI™ app. Community workers equipped with smart phones and the EI™ app provide regular home-visits and empower parents to integrate rehab into children’s daily lives. EI™ addresses lack of services, specialists and barriers to transportation in rural areas.  

EI™ reaches the last mile through technology and achieves cost savings of 75% compared to traditional clinic-based services, thus making it a cost-effective solution for governments and NGOs to adopt.

 Our implementation of this model in the last 7 years covering over 3000 children has shown maximal impact. The results published in global peer-reviewed journals have shown improved child development, decreased caregiver-strain, empowered parents and increased school-enrollment and inclusion.  This has led the Tamil Nadu government to adopt EI™ as a model program in 3 districts with the aim to scale-up state-wide and cover 100,000 children.

We also license this model and app to partner organizations and provide them with extensive training and support on implementation. Five organizations across India have licensed our EI® app. World-Vision Ethiopia and Albania will soon be on-board, with plans for many more partners nationally and globally.

Our belief is that disability is only a condition and should not be a constraint in the pursuit of one’s aspirations. Early intervention is the first crucial step in a child’s journey with the potential to shape their destiny for the better.  Children with disabilities (CwD) are an enormous human resource and the economic equation can be reversed from being a burden to a breadwinner if rehabilitation needs are identified and provided early.

Our solution promotes an inclusive world. It has proven success, is easy to scale, affordable to partners and accessible to families. Various features in the app enable partners to manage the program effectively.

We have technology, knowledge, human-resources and managerial capacities to deliver affordable, efficient and effective child rehabilitation solutions to all CwDs through direct implementation and with global-partnerships.

Our goal is to establish a centre-of-excellence in early intervention and child rehabilitation that focuses on partnership development for innovation, technology development, training and collaborative research, to provide and support child rehab solutions to hundreds of thousands of children, families and communities globally.

We have the structures in place, a model that has shown impact and an award winning tech solution to realize our dreams. 

Amar Seva Sangam directly serves 20,000 people actively enrolled in various programs serving both children and adults with disabilities 

 Our Enabling Inclusion™ programs directly serves 3,872 pre-school children (age 0 - 6) with disabilities and 8209 parents and caregivers of children with disabilities.  

In one year, we will have expanded our Enabling Inclusion™  app and programs to cover school age children with disabilities and will directly serve 6,000 children with disabilities and 12,270 parents and caregivers. We will be serving children and families in Tamil Nadu, West Bengal, Uttar Pradesh, Himachal Pradesh and Assam states of India and in Ethiopia and Albania through licensing partnerships.

 Our Enabling Inclusion™ programs have screened 65,502 children for developmental delays and disabilities, trained 5024 child health, development and education workers and empowered 75,560 people in the community through awareness programs.

In five years, we aim to have 60,000 - 100,000 actively enrolled children (age 0-18 years) with 127,000 - 210,000 enrolled caregivers.

Mission

To become the premier organization in enabling affordable, efficient, and effective child development and rehabilitation solutions through global partnerships.

Approach  

Scale our impact by establishing a Center of Excellence in Rehabilitation for Children with Disabilities to provide child development and rehabilitation solutions through technology development, innovation, training, and collaborative research, in partnership with NGOs and governments globally.

 Goals adapted from SDGs:

Promote good health through our innovations which supports child development, health and well-being globally for children with disabilities and their families, as measured by improvements in all domains of child development and family empowerment and strain.

Promote quality education by equipping children with disabilities, families and educators with the skills to promote inclusive and equitable quality-education for children traditionally left behind, as measured by improvement in child pre-and-primary school enrollment and inclusion.

Promote gender equality by empowering girls with disabilities and their mothers through rehab services, as measured by school-retention and graduation and empowerment of mothers.

Promote decent work and economic growth as measured by number of training sessions, jobs created, job satisfaction and income earned.

Create global partnerships to strengthen and scale the impact of our innovations, as measured by the number of partnerships and children reached.

One barrier we face is lack of awareness about the Enabling Inclusion™  solution with governments and NGOs. Thus far, we have obtained licensing partners, both governments and NGOs through promoting our innovation at international conferences, through journal articles, word of mouth, direct government lobbying and email marketing campaigns. However, we need to build greater awareness of the benefits of our high-impact solution for children and families who are traditionally left behind.  In order to address this challenge, we will create a dedicated partnership development department, that will conduct comprehensive market research and strategic marketing and lobbying to scale our impact through partnerships with NGOs and governments. The Elevate Prize’s  strategic marketing and media expertise, along with the prize’s tremendous publicity and funding will help us generate the needed awareness amongst potential partners.

Another challenge is building the internal IT capacity to support and grow successful partnerships. Currently, we are hiring 3rd-party vendors for software development and certain IT support services. As demand for software customization and upgrades increase, we need to develop a robust internal IT team to meet the challenges ahead. The Elevate Prize will provide us with the connections, mentorship and funding to strengthen our IT team.

The Elevate Prize's platform will create awareness among the public and help us advocate for the need for Early Intervention (EI) services and inclusion of Children with Disabilities (CwD) in government programs.

EI services for CwD in Low-and-Middle-Income-Countries (LMICs) are scarce and if available are fragmented across NGOs and various government departments without convergence, due to a lack of rehab professionals, high costs of operating EI centers and lack of integration. 

The Enabling Inclusion™ model addresses these problems by connecting many community workers to few rehab specialists to provide high quality services at lower costs and provide a technological solution to have an integrated service-delivery model, as we have proven in Tenkasi-District of Tamil-Nadu India.  We will highlight these benefits of our solution to governments and NGOs globally to bring about a convergence of EI, child development and rehab services across various government departments and NGOs to make services for CwDs accessible, affordable, and effective. 

We will advocate for the establishment of Enabling Inclusion™ as a technology platform throughout India and other LMICs and help build institutional frameworks, policies and budgetary allocations for a sustainable and equitable EI ecosystem to reach hundreds of thousands of CwDs in the next decade.

We have set our guiding principles for our leadership team that embodies the values of diversity, equity, and inclusion built on ethical, transparent, accountable and non-discriminatory practices which are measurable, recognizing rights of the stakeholders, safety of products and services and ethical practices in public policy matters.

 Our organization serves people with disabilities and we prioritize their inclusion in our leadership team.  The chairman, vice-chairman, chief-financial-officer and a board member are people who have disabilities. Our leadership team has equal number of women and men. We serve people of all ages, gender, religions, ethnicities and socioeconomic backgrounds and our leadership team is reflective of these diversities.

We provide fair remuneration for all without any discrimination based on gender, race or religion and are transparent about salaries, benefits, and working conditions. We have an ombudsman to guide, monitor and measure compliances including tracking percentage of women and persons with disabilities employed and resolution of complaints. We have documented policies on employees code of conduct, child protection, prevention of sexual harassment, whistle-blower, data protection and web security and informed consent. We are also establishing a research ethics board to ensure ethical research involving human subjects.

As a person with a disability, I deeply understand the challenges faced by people with disabilities and this has been the guiding force of my life’s work.  When I joined ASSA in 1992, the organization was providing services for 50 children with disabilities with a budget of $1500 yearly with 23 staff. I have grown the organization to serve 20,000 people with disabilities yearly, with an annual budget of over $3 million with more than 600 staff.

I led the re-drafting of ASSA’s constitution and established a Governing Body and Advisory Board. I led the efforts to acquire over 40 acres of land to develop a model township for people with disabilities and established an institutional framework for its operations. I lead the designing and development of several institutional-based rehabilitation programs and innovative community-based rehabilitation programs including self-help groups, micro-loans, rehabilitation  and livelihood development.

 Our leadership team, which has experience in medicine, rehabilitation, child-development,  information technology, accounting/finance, business management and research, created and refined the Enabling Inclusion™ innovation through an iterative process of stakeholder consultation involving children with disabilities, their families, service providers, public policy makers and experts. This process is well documented in our peer-reviewed publication.  

Wherever I feel justice and equity is required for the disabled community, I launch myself in support of that cause. One example was the Mumbai Marathon that started in 2004 which offered a platform for charities to raise funds.

 After initially accepting my registration, they rejected my participation as a wheelchair-user for safety reasons and lack of infrastructures for disabled people to participate. I advocated strongly to the organizers to make the event more accessible for all. When that failed, I used the media to highlight the lack of inclusiveness of this event.

 Through these efforts, the marathon organizers formed an inclusion committee with my organization (ASSA) and  other NGOs in the disability sector. In 2005, we created a separate event called the “Champions with Disabilities''. I have been a regular participant since then and I raise about 10% of ASSA’s total funding through this event. From 2005 till 2020, I have been honored every year with the highest fundraiser award and in 2020, more than 1200 persons with disabilities participated. From initially being a thorn in the side of event organizers, I am now an official “Icon” of the event and they invite me regularly to give motivational speeches.

(1)  Award Winning Short Film Documentary:  Sankara Raman,  The Man, The Myth, The Legend 

(a)    https://certamenraras.com/certamen-de-cortometrajes?contest=video-detail&video_id=16714&fbclid=IwAR0MguM38P4vuhF-1lavfO45qjbApde83BHZdYeutuLmpQi6OP1C22bygYU

 (b) https://www.facebook.com/hashtag/ssankararaman

(2)    Short-film: The Man Who Knew No Barriers  

https://www.youtube.com/watch?v=PSpEsxx3nz0

 (3)  Short-Film: THE INVINCIBLE S SANKARA RAMAN 

https://www.youtube.com/watch?v=c2Abefplnyg

(4)  TV Interview

https://www.youtube.com/watch?v=pyBxZFK6m2A

(5) Guest of Honor at the Indo-Canadian Conference on Disability Right and Rehabilitation

https://youtu.be/SMkn9iM2SX4

(6)  Guest Speaker on Access for Disability at Sneha Safan College           

https://www.youtube.com/watch?v=1IaCwLeo43I

(7)  Guest Speaker at Neuroscience Research, Post Graduate Institute of Medical Education & Research, Chandigarh for Integrated Therapeutic Approach for Children with Disabilities in Rural South India                            

 https://www.youtube.com/watch?v=wnCERaF4H3I

(8) Guest Speaker at  United Way Chennai on Social entrepreneurship               https://www.youtube.com/watch?v=KLiinszvhmY

(9) Guest Speaker at the Saving Brains Case Clinic Presentation  https://www.youtube.com/watch?v=MQez24pfTZk

(10) Special News Story and TV Interview                                                            https://www.youtube.com/watch?v=6ogglkIxIR8

(11)   News Story and  TV Interview                                                            https://www.youtube.com/watch?v=kqT9aXJXiEY

(12) News Story on India's First Every Early Intervention Conference hosted by Amar Seva Sangam https://www.youtube.com/watch?v=yfJfDkeJmk0

(13) Another  News Story on India's First Every Early Intervention Conference hosted by Amar Seva Sangam                                https://www.youtube.com/watch?v=j1OcYnNqeKw

(14)   STANDARD CHARTERED MUMBAI MARATHON Award Program                       https://www.youtube.com/watch?v=_NVNxW9-Ly8

(15)   Mumbai Marathon                                                             https://www.youtube.com/watch?v=7etvJ97ve7s

(16) Bangalore Marathon                                                https://www.youtube.com/watch?v=MAXEi0fNogw

(17)   Chennai Marathon                                                    https://www.youtube.com/watch?v=ZSGu8Zv-WN

(18)   Media coverage on the Enabling Inclusion app and model: 

 https://earlyintervention.amarseva.org/media/

The Elevate prize funding will help us reach our goals by establishing and strengthening the Centre for Excellence in Rehabilitation for Children with Disabilities which will help us develop partnerships to scale our impact and grow our licensing revenue. The funding will be a seed grant to establish this Centre. We project that we need to reach 22,000 children licenses, to reach the break even point, which will likely take 3 years.

Specifically, funding for the Center will scale our impact through these core divisions:  

(a)   Technology: EI™ app maintenance, upgrades (including expansion to cover school-age children), customization.

(b)   Training: partner organizations in implementing EI™ model and app, enhanced rehab training, online modules.   

(c)   Support: robust support system for partners including EI™ app and rehab help desk, M&E, feedback.

(d)   Partnership Development: awareness building, promotion, strategic marketing, building and sustaining new partnerships. 

(e)   Research and Innovation: building the evidence base of the impact of our work and research on new techniques and models in rehabilitation that promote sustainable family-centered and community participatory models .

(g) Advocacy: public awareness building and government lobbying for inclusion of child rehabilitation policies and framework with appropriate budget allocations and public investments. 

Our major funding partners include Tamil Nadu Government, Saving Brains / Grand Challenges Canada, Handi-Care International, Azim Premji Foundation and Standard Chartered.

Our research partners for monitoring and evaluation (M&E) are University of Toronto, University of British Columbia, Queen's University and McGill University in Canada. Each of these partners have assisted us with different research questions. Through these collaborations, we have presented our findings through publications and conference presentations globally.

We have partnered with Harvard-Centre for the Developing Child through MIT-Solve to help us refine our theory of change and M&E plan. We have partnered with the Saving-Brains Learning Platform for training with M&E, scaling up and leadership.

Through our partnership with Ashoka, we received training, mentoring, tailored support, networking, and visibility to further replicate our innovation and impact in other geographies.  

We are currently partnering with 5 NGOs and Tamil-Nadu government who have licensed our EI app and are implementing our innovation in various regions of India. We provided them with training to launch the model and app and provide them with support services.  We are in the process of finalizing a partnership with World Vision who will be licensing our app and model for implementation across various countries globally.