Down Syndrome Society Nepal is an NGO created in 2010 by Shila Thapa and 8 other parents of intellectual disabled children. DSSN protects and promotes the basic human rights of the intellectually disabled children. Despite how relatively common Down syndrome is, in Nepal it is not understood as a chromosomal disorder. Nepalese doctors and nurses are often not well informed and lack basic understanding of the symptoms; leading to tragic misdiagnosis. Often children are not properly diagnosed and never treated as they should be. As Down syndrome is associated with many serious physical problems (heart defects, poor eyesight, etc.) that demand urgent care, the lives of many Down’s children are simply lost without access to relevant medical practitioners and counsellors. Shila Thapa, the founder of the organization, lost her brother to meningitis at age six as her mother was not educated enough to react in the right way. That was a powerful lesson to Shila: mothers need education and access to care for their children. In 2002, Shila gave birth to her second child. After a lengthy struggle and multiple consultations with doctors, her son was diagnosed with Down Syndrome and a heart condition. Following this and due to lack of treatment in Nepal, Shila had to go to India in order for her son to undergo operations for his survival. This allowed her to learn more about the condition and Down syndrome’s support groups in India. Back in Nepal, Shila had to train herself in physiotherapy to be able to answer to her child’s need and this led her to open a clinic to support other children with Down Syndrome. In 2005, she founded the Down Syndrome Support Centre—the first in Nepal, now called Satyam Day Care Centre (SDDC). Thanks to her mother-in-law’s support, Shila was able to cater to her sons need and to other needy children with Down Syndrome, whose parents cannot afford treatment. And so, in 2010 she started Down Syndrome Society Nepal with the help of other parents, especially of mothers. Since 2005, in a country where a word for Down syndrome does not exist, Shila has reached out to parents, the medical community, the government and a network of citizen organizations (COs) working with disability, to make children with Down Syndrome and their parents a vibrant, empowered community with the resources and education to improve the lives of their children and influence Nepalese society. Shila has employed a two-pronged institutional strategy by operating a support centre and day care centre, as well as partnering with other disability groups and lobbying the government of Nepal. The support centre is responsible for sensitization programs on Down syndrome amongst parents, medical practitioners, medical institutions, educational institutes, and the government. Shila informs professionals and the general public that Down syndrome is not a disease but a genetic condition. In Nepal, children with Down syndrome are viewed as retarded, dangerous, and even “mad” and their mothers are often discriminated against and ostracized. Through programs organized by the centre, Shila is creating spaces where children with Down syndrome and “normal” children interact and learn from each other. She encourages families and society to celebrate these children and their talents. She does not force activities, but develops their natural talents. The centre organizes public programs as a mean to raise funds while increasing awareness and also includes celebrities and lawmakers in her awareness programs. In-kind support is provided by volunteers who offer many therapies to the children while large organizations contribute with equipment, books, donation boxes and business-plan consulting to Shila. The support centre also runs a vocational training program for children over twelve-years-old to enable them to become economically productive members of society. Named Prothshaan, this program focuses overall on enhancing the lives of people with Down syndrome and people with intellectual disability, providing quality instruction and meaningful work. The centre provides Physiotherapy, an Early Stimulation Program, Occupational Therapy, Speech Therapy and routine vaccinations to the children. The centre also provides classes, music and dance therapy, exercise, and other services to Down’s children. Currently, Satyam day care centre supports 15 children or young adults with Down Syndrome or intellectual disabilities and touches around 250 families via 15 partner day care centres. The current Satyam Day Care Centre services are: - Special education: education of the children in adapted way for each one. - Medical general check-up and support for special medical needs. - Speech therapy done by Shila as she has attended a workshop in Singapore. - Dance therapy done by a Nepali volunteer twice a week. - Music therapy done by a Nepali volunteer once a week. - Occupational therapy: day to day activities which means life skill, daily routine activities. - Physiotherapy done by Shila who follow a course for a year. - Self Help Skills: division among the children of daily work as cleaning, cooking, washing clothes. - Early intervention: detection of Down syndrome and activity with young children (sensation of cold/hot, texture, noises…). - Physical Training and Sports. - Educational tours: recreational activities out of the centre one Friday a month to claim the “Right to go out” (cinema, park…). 12 persons are working in the centre: the director (Shila Thapa), the principal of the centre, 4 teachers, 1 supervisor, 1 administration officer, 1 driver, 1 cooker, 1 kitchen assistant and 1 office boy. 3 teachers have received a teacher training from the Japanese Cooperation but not specifically in special education. A new teacher has been hired from end of March 2014. She has received training in early childhood stimulation and on how to develop activities for children with various disabilities. The principal of the school also acts in the education program and has received a Montessori training. The 15 children coming daily to the center are from 4 to 25 years old :3 have 24 and 25 years old, 3 have between 14 to 16 years old. The rest of them are from 4 to 12 years old.