hen we started work in 1997 only 23 people with deafblindness received help. Today, over 49,000 are receiving support.
There are more than 500,000 people with deafblindness/multi-sensoryimpairment (MSI) in India, and less than 16 per cent receive some form of specialist support. Sense International (India) started working in 1997 and remains the sole organisation working with deafblind/MSI people and their families at a national level.
Most children with deafblindness in India remain in complete isolation at home. Many are neglected, in poor health and may be wrongly labelled as 'intellectually disabled'. Families struggle to know how to support their child, and may be ostracised by their local community.
When Sense International (India) began in 1997, there was little awareness of deafblindness and there were almost no services. One school - the Helen Keller Institute for Deaf and Deafblind – supported just 23 students with deafblindness.
“Initially I doubted the skills and strength of my son, but it is a changed story today. I am sure he will strive to be an independent person in his life. Until the end I will be grateful to Sense International (India) for giving my son a new direction in his life” - Ruksana, Mother of Feroz, a child with deafblindness.
Sense International (India) works in partnership with local organisations to develop sustainable services for people with deafblindness. Today we work with 45 partner organisations and the government in 21 states which provide services to almost 49,000 people with deafblindness. Our range of services includes: early intervention services in hospitals, inclusive and special education, vocational training and employment support, teacher training, advocacy and information dissemination.
These individuals now receive medical and educational support. They learn different ways to communicate, develop daily living skills and receive training for work. Rather than being isolated they can enjoy human contact, grow in confidence and play their part as a valued member of society.
A person with deafblindness will have a very different education compared to someone with full sight and hearing. This is the same for people who only have hearing or visual impairment.
Helping a child to find a way to communicate and express their needs is vital, and touch will often play an important part in this. Children with deafblindess also need to learn skills that we often take for granted– such as dressing and feeding themselves, and moving around safely in their environment.
Teachers and educators of people with deafblindness require specialist skills and knowledge. Sense International (India) has worked tirelessly to ensure that teachers receive the right training. It has also collaborated with the Indian government to ensure the educational needs of people with deafblindness are met.
We also recognise that parents play a key role in their child’s education. We offer information, training and support to parents and have played a key role in setting up the national network for parents of children with deafblindness with more than 600 families as members. In addition we have also set up the national network of adults with deafblindness (Udaan) with a membership of 100 and the national network of teachers (Abhi Prerna) with 420 members.
Sense International (India):
- Created the first teacher training course on deafblindness in India and supported the development of five training centres to deliver this.
- Has trained more than 3,800 teachers in 21 states about deafblindness.
- Set up four regional learning centres across India. These not only run high-quality programmes for people with deafblindness/MSI but also support other, less experienced local partner organisations to set up services.
- Developed a very successful partnership with the Government of India’s ‘Education for All’ programme, which has helped us to reach more than 63,500 children and adults with MSI / deafblindness.
- Persuaded the Ministry of Human Resource Development in India to include children with deafblindness / MSI in primary schools at state and district levels.
For many people with deafblindness, it is not practical for them to travel to receive specialist help. Field workers and volunteers trained by us - in partnership with health, education, vocational and social services - offer rehabilitation and education services to around 5,000 children in remote rural areas.
Experience shows that when a child with deafblindness can learn successfully alongside their family, this can be very positive for the child, and the family feel more able to care for them.
Home-based care often includes social activities like picnics, outings, parents' meetings, and festivals. These bring neighbours and the community together with deafblind people and their families and helps reduce stigma.
Advocacy & networking
We offer people with deafblindness/MSI, their families and those who work with them the opportunity to meet, share information and to lobby for more services.
We have established three national networks with almost 1,852 members across India; a network for adults with deafblindness, for family members and for teachers.
As a result of our strong advocacy initiatives, Sense International (India) was invited by the Government to be a member of the drafting committee for the preparation of a new Disability Bill in 2011. And after 20 years of advocacy, deafblindness was recognised and included in the Rights of Persons with Disabilities Act, 2016 by the Government of India; and Sense International (India) now has consultative status with the United Nations.
We offer training programmes which draw upon local skills and resources to help young adults with deafblindness learn specific trades and skills, enabling them to become part of the working economy.
Sense International (India) has supported the creation of vocational training programmes across various states. These help young adults with deafblindness to learn a specific trade or skill, so they can work and gain a measure of social and economic independence.
Caring for a child with deafblindness can be extremely demanding, especially for mothers. They may be isolated, have little social life and suffer from poor physical and emotional health.
Sense International (India) has set up respite care services in two locations where a child can be cared for so that parents can take a much-needed break, or attend to their other responsibilities.
Campaigning and advocacy
Deafblindness was an unknown disability in India before Sense International began its work.
We have worked tirelessly with other disability, community and parents groups to lobby with the government - including the ministries of Social Justice and Empowerment, Education (Ministry of Human Resource Development) and Health - to ensure that deafblindness is recognised as a distinct disability. The draft ‘Rights of Persons with Disabilities’ Bill will recognise ‘deafblindness’ as a distinct disability.
This will mean that many more deafblind people and their families will receive education, social welfare, health and employment support from the government.
Our successes have included:
- We were invited by the Government of India to be a member of the drafting committee for the new ‘Rights of Persons with Disabilities’ Bill in 2011.
- India has ratified the UN Convention on the Rights of Person with Disabilities which binds the State to make sure that all our disability related legislations and policies carry the spirit of the Convention.
- We have established three national networks with almost 1,200 members across India: a network for deafblind adults, for family members and for teachers.
- The Sarva Shiksha Abhiyan (SSA), Government of India's flagship programme for achieving Universal Elementary Education (UEE) has included training and information material on deafblindness in regional languages across states.
- Mr. Akhil Paul and Mr. Zamir Dhale, who is deafblind, represented deafblindness and multiple disabilities on the board of the Government of India’s National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities.
Work in progress
Although a low incidence disability, there is a large population of people with deafblindness/MSI who face many challenges and barriers. Our goal is to help these people flourish by:
- Expanding our pilot project on the early screening of newborns for vision and hearing difficulties in 15 hospitals across India.
- Setting up another regional learning centre in North East India.
- Supporting young adults with deafblindness to set-up income generation activities and become independent and contributing members of the society.
Jesse, a teacher from our partner NGO, Kottayam Social Service Society (KSSS) with Sneha, a child with deafblindness. Jesse visits Sneha at her orphanage, Providence Home, twice a week for home based care. Jesse is helping Sneha identify the smell and touch of a flower.
- People's stories from India: Alisha | Rajesh | Rizwan
- Visit the Sense International (India) website
- Sense International (India) annual reports
Sense International (India)
2nd Floor, Administrative Block
Andhjan Mandal Campus
Opp. Indian Institute of Management (IIM)
Vastrapur, Ahmedabad - 380 015
Tel: +91 79 2630 1282
Fax: +91 79 2630 1590
First published: Thursday 27 June 2013
Last updated: Wednesday 10 January 2018