Children are our future. On the mission to ensure a progressive future for them, especially for those sidelined due to their disabilities, creating a proactively equal society is the only way we can be sure of ourselves to a tomorrow at all. Otherwise as WHO declared that ‘If children with developmental delays or disabilities 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,’ we will be living in a nightmarish time of unimaginable horrors.

To save us from this horrendous prediction coming true, Amar Seva Sangam for the last 40+ years since its inception in 1981–UN International Year of the Disabled, is on a mission of empowering disabled citizens by establishing a Rehabilitation and Development Centre by establishing a Centre of Excellence for rehabilitation for Persons with Disabilities by building partnerships with NGOs and Governments and by technology development, continuous innovation, training, and research, to provide and support rehab solutions to Persons With Disabilities, families, and communities in the country.

Launched by 2020’s Padma Shri Awardee, Shri. S Ramakrishnan, Founder Chairman cum President––Wheelchair user because of a spinal injury––and professionally guided by Shri. S Sankara Raman, Chartered Accountant, and Promoter Co-Chairman cum Hon. Secretary––Wheelchair user due to muscular dystrophy––today, Amar Seva Sangam is actively engaged in core activities and initiatives including,

*Institution-based rehabilitation:

• Spinal Injury Post-Acute Care Rehabilitation.
• Medical Testing and Therapy Units.
• Inclusive Higher Secondary Schooling and Higher Education.
• School for Children with Special Needs.
• Residential Programs for Children with Locomotor Disabilities and Intellectual Challenges.
• Residential Programs for Youth with Disabilities for their Rehabilitation, Skill Development, and Education.
• Vocational Training for Livelihood
• Appliances-Making and Maintenance Unit.

*Village-based rehabilitation:

• • Early Intervention (EI) Program for Children with Developmental Delays and Disabilities (Cwdds).
  • Empowerment Programs for Persons with Disabilities in Rural Areas through Self Help Groups (SHGs), besides driving Economic and Livelihood Initiatives and Mobilizing them into Self-Advocating Individuals.
  • Rehabilitation Programs through Home-based and Parents-Participatory Centers for Children and Grownups with Disabilities.

*ASSA Centre of Excellence:

• • “We are establishing a Centre of Excellence for the Development and Rehabilitation of Children with Disabilities to scale the impact of Enabling Inclusion (EI) Model and technology by building partnerships with NGOs, Governments, and Corporates,” informs SS Raman.
  • This Initiative will help ongoing Technology Development, Continuous Innovation, Training, and Collaborative Research to reach millions of Children with Disabilities and families globally to provide rehabilitation solutions.
  • He states, “Our Motto is that no child is denied schooling experience because of disabilities.”

He furthers that it is their visionary dream, that Persons with Disabilities live in a proactive society where equality prevails irrespective of physical, mental, or other challenged with the rest of the society. It is a futuristic vision whereby Amar Seva Sangam plays the role of an enabling agent to get Persons with Disabilities ‘equality of status, opportunities, and access.’

The Guiding Star

Amar Seva Sangam was in dire need of a professional approach in its activities to ensure proper implementation of its programs for the welfare of persons with disabilities in rural areas.

Towards this, Mr. S. Sankara Raman Restructured the constitution of Sangam and established a Governing Body and an Advisory Board; introduced the latest software for modernizing accounting system for clarity and transparency; responsible for Planning, Designing and Establishment of massive infrastructure for Home for Disabled, Physiotherapy Center, School buildings, Vocational Training Center, Hostels, Computer Training Center; earlier the campus was about 3-5 acres of land, it is now more than 33 acres, with over 35 buildings to cater to every section of disability independently; Using the information technology he introduced several novel and bold initiatives.

For example, Enabling Inclusion through Enabling Inclusion® App for Early Intervention for Children with Developmental Delays under age six years which is now extended for children above six years; Helped in developing village and community-based programs for rehabilitation of the disabled by adopting 900+ villages and designing and implementation of the delivery mechanism for the reach at village levels in four southern districts; helped set up 785 Self-Help Groups; actively participated in all Marathons from its inception held across the country every year and regularly organize mega and medium fundraising programs using social media platforms for creating awareness about disability and spreading the work of Sangam; he made Siva Saraswathi Vidyalaya become an inclusive school and to upgrade it from Nursery in 1991 to Middle School in 1995 to High School in 2009 and then to Senior Higher Secondary level in 2015 in which presently 667 rural poor students getting a quality education.

Externally, he promoted awareness about Muscular Dystrophy at ‘NGO Expo 2014’ held in Mumbai; He is a Member Trustee, CBR Forum, Bangalore; Treasurer of Gandhigram Trust, Dindigul; For equal access and barrier-free environment, assisted ICF-Perambur in designing disabled-friendly coaches; helped set up Barrier Free Bus Station in Tirunelveli; conducted national level seminar on the law on handicapped in 1995 under the Chairmanship of Supreme Court Justice Shri V.R. Krishna Iyer which paved the way for enactment of Persons with Disabilities Act by our Parliament in January 1996; He is also a Founder Member of Tamil Nadu Udavikkaram Association for the Welfare of Differently Abled, Chennai.

Several local, state, and national level magazines/newspapers like Dinamani Kathir, The Hindu, The Times of India, and The Indian Express, carried stories of his achievements/articles. He was an Independent Director for NALCO for three years from 2015 to 2018, by which he showcased that disability is not a constraint but only a condition that can be won over.

Ensuring Equality

Sharing his opinion on how the adoption of modern technologies is transforming the not-for-profit sector and how ASSA is adapting to the change, SS Raman says that their organization serves people with disabilities and they prioritize their inclusion in ASSA’s leadership team. They have five people on their leadership team with visible disabilities including their chairman, co-chairman, and chief financial officer. He adds, “Our leadership team has an equal number of women and men and we are guided by the principle of having equal or more women on our leadership team as part of our hiring practices. We also actively recruit and hire people with disabilities to be part of our leadership. We serve people of all ages, religions, gender, gender identity, sexual orientation, ethnicity, and socioeconomic backgrounds, and our leadership teams are reflective of these diversities.”

At ASSA, they have recognized that those left out of early intervention come from the most marginalized families including those in remote areas, below the poverty line, and from minority communities related to religion, caste, and belief systems. He says, “We have ensured our solution targets these communities by partnering with organizations that are dedicated to reaching these marginalized communities.”

Thus far, 28% of children and families benefited from their innovation are below the poverty line and 61% are middle-low income. In addition to income levels, their beneficiaries are reflective of the broad diversities present in communities reached.

He informs, “Our innovation is the culmination of extensive feedback from parents through stakeholder consultation/interviews.” Every six months, feedback from parents is collected through a Caregiver-Assessment-Tool that measures program-engagement, family-empowerment, caregiver strain, and parent-child-interactions within the app.

He mentions, “We have Early-Intervention-Parent-Groups with parent leaders elected.” They allow parents to share/interact and form social-support networks and connect to self-help groups for livelihood initiatives. They also act as a self-advocating solidarity group for child and family social inclusion.

Their family-centered approach enables families to identify a child’s strengths and family priorities to set goals/treatment plans with RPs. In addition, extensive consultations, education, and awareness programs are conducted in schools/community/government allows for stakeholder inputs and strengthen the program.

An additional stakeholder-driven process of feedback from community workers, rehab specialists, governments, and other leaders leads to the conceptualization and planning of the solution and also to programmatic improvements through an iterative consultative process.

Early Intervention

Speaking about the challenges, SS Raman states that according to a recent UNESCO report, in India, 72% of 5-year-olds with disabilities have never attended any educational institution. In Tamil Nadu, 23% of all children with disabilities aged 5-19 have never attended an educational institution, while 99.4% of all children attend school.

Parents and caregivers of children with disabilities face higher demands than caregivers of children who do not have disabilities in India, because of financial difficulties, challenges accessing care, the time required for caregiving duties, perceived and experienced stigma, discrimination in the community, and/or within families, and the physical burden of care.

“But the key is to make these children access to schooling which depends on catching them young and providing them Early Intervention,” he believes.

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He furthers that a peer-reviewed study that appeared in the November issue of the prestigious journal, Frontiers in Public Health, showed that school enrollment for children improved from 70% to 85% for those provided with early intervention. The study also showed that caregiver-child therapy visit attendance significantly improved over time, from 60% to 95%, indicating caregiver recognition of the benefits of early intervention. The 2017 study was conducted over a 2.5 in rural South India including 1050 children and their parents.

There are 2.3 million Children with Developmental delays in India. More than 70% of them live in rural areas with no access to early intervention services. There are 53 Million children with developmental delays in low and middle-income countries.

He conveys, “Our solution is to make the Early Intervention reach the homes of the children by using the GPS mobile technology which enables community rehab workers to perform therapy sessions to children by connecting them with rehab professionals and training the parents.” It is an end-to-end digital case management system that ensures quality services are delivered and monitored on a real-time basis at an affordable cost.

An Innovative Paradigm Shift

He furthers, “Our innovation is a breakthrough as it provides EI services to children by the parents in their own homes by mobilizing and training local women in the community to act as community rehabilitation workers to facilitate EI services by connecting them with rehabilitation professionals using our mobile app.”

It is Awarded as one of the 30 best digital innovations in the social sector for the year 2020 By Spring and Anne February-2020 from The United Nations zero project in Vienna along with the MIT Solve Global Solution Award in September 2019. “Our innovation is a paradigm shift from therapists-centered to family-centered, center-based to home-based, individual-owned to community-owned, and from high-cost to cost-effective.”

They have reached 5,561 CwDD and their families and have screened 1,57,542 children for delayed development and reached 1,31,278 people in the community through awareness programs (Source https://earlyintervention.amarseva.org/). Their results have shown 87% visit attendance, leading to improved child development. 73% of families have shown greater empowerment and 74% have shown decreased strain using validated tools and there has been an age-adjusted increase in school enrolment for CwDD from 70% to 85%.

Their long-term plan for financial sustainability is growing their partnership and generating income through their training and software licensing services. “We need to reach 40,000 children licensed with our licensing partners to break even. To bridge the gap until we achieve that level of enrollment, we will have obtained funding over the next four years in the form of grants for $1.6 million. Our goal is to become financially sustainable within this next four-year period,” shares SS Raman.

Expanding the Horizons of Responsibility

In their CSR expansion drive, they have several projects from small, medium to big sizes in health, education, and skill development sectors both for OPEX and CAPEX. Their list of CSR projects can be seen at https://www.amarseva.org/csr-cell/

All their projects are CSR compliant and registered under MCA Reg. No. CSR00000229 and we are a Registered Charity under Section 12A and 80G under Income Tax Act Reg. No. AAATA9099HE20214. They are also registered under Foreign Contribution Regulation Act Reg. No. 076030105 and eligible to receive foreign contribution.

In his advice to budding social entrepreneurs aspiring to venture into the not-for-profit space, SS Raman says, “Be brave in taking risks do not compromise on values at any cost, go the extra mile in being transparent, be fearless in sharing the difficulties with your stakeholders and don’t feel shy to ask for support.”

An Eternal Hope of Social Reforms

On envisioning scaling ASSA’s operations and offerings in the future, he shares their objective, “Scale our impact by building partnerships with NGOs, Governments, Corporate and Funders through licensing, Knowledge partnership, Public Private Partnerships and/or by Direct Implementation.”

It is a system change:

• • From therapist-owned to parents-owned.
  • From Centre-based to home-based.
  • From Medical Approach to Rehab approach.
  • From therapy centered to family centered.

SDG – Quality Education – 4.2.1 and 4.2.2; Partnerships for the Goals 17.2;

ASSA offers,

• • Licensing – Will license the EI App with the right to use for an annual licensing fee both for India and International NGOs.
  • Knowledge Partnership – Will hand over the app to various Govt. departments for mass scale-up and will be the knowledge partner.
  • Public Private Partnership – Will run the program on behalf of the Government or NGOs with CSR funding.
  • Direct Implementation – Will directly implement with CSR Funding opportunity.

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