Sandesh (meaning “Message”) is an NGO in Bangalore working to create a community for its members with intellectual and developmental disabilities. The message which Sandesh conveys is of love and equality for all human beings regardless of their background, cast or religion.
A home and community for people with intellectual and developmental needs
Background
Sandesh started in 2010, by young founding members highly experienced in the field of caring and selfless service. It is a Charitable Trust and an organization registered under the Disability Act 1995. With a flat organizational structure, the 19 staff members currently serve over 70 members across various age groups.
Intellectual and Developmental Disability (IDD) is a lifelong genetic condition. Children with IDD have varying degrees of learning and language disabilities as well as impaired motor skills, ranging from mild to severe. The child matures at a slower pace emotionally, socially, and intellectually.
Challenges
Individuals with IDD are human first. Their development is influenced by the quality of care, education, and social experience offered to them just like everyone else. Unfortunately, not everyone is able to understand or accept this and act appropriately to the needs of such individuals. There are serious challenges faced by not only children with IDD but their parents as well. Some of these include:
A lack of early detection or awareness on the genetic disorder and understanding the special care that needs to be taken
Inadequate facilities, high costs and an absence of counseling or day care centers for IDD members
Lack of financial resources, which prohibits spending money on IDD children
Discrimination faced by IDD children as compared to their own siblings
A fear of rejection within and outside of the family. More prominent with mothers who often face rejection within the family and as a result do not expose these children to the outside world
Vulnerability to abuse from their peers due to a lack of feeling and concern for them. Since IDD children develop at a slower pace, the gap between IDD children and their peers becomes larger with time
A lack of statistics and awareness in India on this phenomenon also affects their acceptance. For instance in USA, 1 in every 730 babies suffers from Down Syndrome. Unfortunately, no similar statistics are available in India
Serving the Need
Sandesh is not a solution to IDD, but provides answers too many questions faced today. It believes in providing each individual their own identity by giving them time and space required to develop and work towards making them independent.
Under the umbrella of various activities Sandesh:
Conducts an early intervention program
Runs a day care centre with various useful therapies and functional academics
Provides pre-vocational training
Operates a vocational centre for functional academic skills training where they together make Eco-friendly hand-made products
Early Intervention Program
Early intervention is a systematic program of therapy, exercises and activities designed to address developmental delays that may be experienced by children below the age of 8. With the help of Anganwadi workers, the Sandesh team makes regular visits to various homes within a 10-km radius to offer to parents counseling, encouragement and to teach parents how to interact and meet their child’s specific needs. A home visit is scheduled twice a week and mothers are encouraged to bring their infants to the Sandesh centre twice a week for various therapies. Currently, the early intervention program is helping about 15 mothers.
Day Care Center
Sandesh runs a day care centre for children between the ages of 3 to 13 years and provides them with various useful therapies which include:
(a)Occupational Therapy: This method of therapy promotes health, well-being and independence through occupation. The activities are customized keeping into account the age and condition of the child. For instance, infant’s occupations are sleeping, feeding, interacting with caregivers and exploring their environments with their hands and eyes. For toddlers their occupations are learning, socializing and developing skills to take care of themselves.
(b)Speech Therapy: This works on developing communication skills to help socialize with language, articulation and oral motor planning skills.
(c)Physiotherapy: This aims to address the developmental problems that arise and is given to improve muscle strength. This assists in achieving maximum functional independence.
Pre Vocational Training
Pre vocational training is designed for ages between 14 to 18 years old or for individuals requiring assistance with daily living, socialization and communication skills. Individual centered programs are developed to enhance the individual strengths. Sandesh provides pre vocational training in arts and crafts (envelopes, bags, bookmarks, cards, candles), handloom (scarves, stoles, table mats, napkins), chalk making, music, dance, painting and printing
Vocational Center
Sandesh works with members above 18 years to provide job-related skills and concepts. Members in vocational centers are paid for their work which makes them confident, independent and more responsible. The vocational centre functions based on gift orders from corporates and individuals, especially during festive season.
The members come to the centre from nine in the morning and stay there till 4:30 in the evening. The youngest member enrolled at Sandesh is aged 1 year 6 months and the oldest is 36 years old. Sandesh ensure that parents remain involved as much as possible.
Sandesh operates on human values and sound principles, it practices what it wants to preach, the core values on which Sandesh operates are:
Everyone has a right to discover their potential and be creative. Improving work brings dignity and self-worth in a person
Always work in a spirit of community where there is no division based on abilities, caste, gender or financial conditions
Promote the concept of equanimity and operate in an open culture with no hierarchy. Everyone needs to contribute towards the same goal and work and dine together in an atmosphere of love, care and equality
About the Founders
Sandesh’s co-founders Jenny and Sebi have an array of experiences in serving differently abled members which brings in a lot of credibility to the cause they are serving.
Jenny is a special education trainer. Her entire adult life has been devoted to working alongside members of society with special needs. Her vast experience of 24 years with differently abled members gives her hope and strength to see a better society without any discrimination.
Sebi has worked for 19 years with differently abled members. Sebi understands the power of art and colors. He is very creative at work and leads the group to find their skills through creativity. He dreams of making Sandesh self-sustainable and believes empowering each member of Sandesh is critical.
Nupur Singh – A science graduate , has been sharing her time for those with special needs for over 15 years. She is connecting Sandesh to the outside world. It’s her passion and love for members of the community that drives her to work and bring more support to Sandesh, her immense contribution is of great value to the community.
Anil Kumar– a Fine arts professional, has twenty years of experience working with members with special needs. He has worked at Asha Niketan in both Australia and Canada and shares the same passion as his team members. He has spent time with Brother Mani Karott to understand how Art Therapy can provide benefits to members with special needs. He is a very strong pillar in the Sandesh Journey.
Our Visit
Our visit to Sandesh was truly a humbling experience. Jenny and Sebi’s inspiring journey and their dedication to start Sandesh as an act of pure love and care is truly motivating. Sandesh welcomes all IDD challenged persons in need. Since a lot of them come from the nearby underprivileged areas, they are not even able to pay the fees.
We heard of several success stories of members who have progressed well in their lives through Sandesh. The staff is extremely dedicated and gives in their best to each of the members. They bond with them as one large family.
Sandesh is a project largely supported by friends and well-wishers in the form of donations and/or from the products of the vocational unit.
Sandesh spends Rs 5,000/- per child per month. Almost 90% members don’t pay at all. Individuals with disability are usually treated as a burden by many. It is even harder for people who are poor. Money has never been a criterion to say no to anyone at Sandesh.
Presently, all of Sandesh’s activities take place in rented premises. Sandesh is looking to move to a permanent place. Additionally, they want to improve their facilities and welcome more members.
To keep the momentum going, Sandesh needs support from friends and well-wishers. It also needs to take care of the financial needs of the dedicated staff. Sandesh has established a replicable model showcasing how best to give true identity to the members who are differently abled.
The first step toward change is awareness and then comes acceptance, it is with this intent that Sandesh participation in TCS World 10K Bengaluru Marathon 2017, followed by another edition in 2018. The members enjoyed each moments of the event, with improved awareness, Sandesh is now looking forward for more friends to join the journey of Sandesh. Truly a cause worth supporting.