What we have done and what we can do
"Parent Support and Public Awareness" - project summary
This project has been developed in partnership with the Down's Syndrome Association of Nepal (DSAN), which will be responsible for implementing the project. The project has two parts: firstly a campaign to raise awareness and understanding of Down syndrome in new parents of babies with Down syndrome; and secondly intensive training workshops with parents of young children with Down syndrome to provide them with key skills to support their children in their early development. The project will be targeted at parents living in remote areas of Nepal, where information and support is hard to find.
In Nepal parents of children with Down syndrome often lack basic information about what Down syndrome is. For parents of new babies with Down syndrome this can leave them confused and worried during a difficult emotional period. As their baby grows into a child, many parents don’t have information about the medical conditions that may affect children with Down syndrome or the skills to support their child in early development. Access to this important information is most restricted in the remote, rural areas of Nepal.
How will this project solve this problem
The awareness campaign will reach pregnant women and new parents in remote areas of Nepal through information brochures provided at health posts and hospitals. It will provide them with an understanding of what Down syndrome is, medical issues related to it, and what life is like for people with Down syndrome. This understanding of Down syndrome will help them to provide a loving, secure environment for their baby.
The training sessions for parents will provide parents of young children with Down syndrome with skills for the day-to-day care of children with Down syndrome, including effective communication and the identification of key medical problems. Parents will also learn basic physiotherapy and speech therapy techniques to use to support their children to develop and reach their full potential.
Potential long term impact
The impact of awareness raising and training for parents of young children with Down syndrome will continue throughout their child’s life. The first few years of life are crucial for the development of children with Down syndrome, and the right support from skilled and knowledgeable parents at this stage will give their children the start they need in life.
What we will spend fundraising income on in Nepal:
- £10 will contribute towards a day of training for a parent
- £33 will pay for a day of training for a parent.
- £66 will pay for a day of training for 2 parents.
- £99 will pay for a day of training for 3 parents.
- £250 will pay for information leaflets to be distributed across a district in Nepal.
- £330 will pay for a day of training for 10 parents.
- £500 will pay for information leaflets to be distributed across 2 districts in Nepal.
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Life in Nepal
Neglected by society, as well as parents and government, children with Down syndrome in Nepal are devoid of their rights to education, health and social participation. Parents take them as a burden to the family, draining their money, time and minds while being of no use in their old age. The government boasts of free services in health and education, but these are practically nil. Society treats them as aliens. They are teased and bullied by friends and relatives. People with intellectual disabilities are the most discriminated against and segregated of all people with disabilities.
Some in society believe people with disabilities are possessed by evil spirits. Thus religious leaders often subject people with disabilities to mental and/or physical pain as a means of exorcising the spirits .People with disabilities are completely rejected by some cultures, in others they are outcasts, while in some they are treated as economic liabilities and grudgingly kept alive by their families. Children who are met by such beliefs and attitudes can hardly develop to their full potential. They get less attention, less stimulation, less education, less medical care, less upbringing and sometimes less nourishment than others.
Families still do not understand that this condition is not anyone’s fault. Mostly the mother is blamed. Rural middle/low income families have little access to the information or the resources of urban areas, illiteracy is widespread and people are working hard just to sustain daily life.
Postnatal diagnosis is a far dream in remote settings. Few literate parents have access to the internet and so they get information about Down syndrome by word of mouth, radio and TV and where possible DSAN.
Postnatal diagnosis even in the capital city Kathmandu is not available. Samples need to be sent to India for analysis, which is expensive and time consuming. Few paediatricians diagnose Down syndrome by characteristic features.
Early development and education
Acceptance of children with Down syndrome in families and society is getting better and more people visit DSAN in Kathmandu, even from remote areas, to get information on services and support. DSAN has been running a small early intervention centre with 10 children with limited resources.
There is a lack of teachers trained in special needs education, until now regular teachers have been doing the job. The government department of education is taking an interest in inclusive education rather than special education and is moving forward to develop curriculum and teaching materials. Right now there are almost no special schools for children with Down syndrome. Mainstream schools do not admit our children as they do not have the resources and training for their staff to handle them. Some who do start, drop out by grades 1-3.
Healthcare is slowly improving. There is free heart surgery services in two government hospitals, a few indexed categories of medicines are free, but otherwise all services are on a paid basis. Doctors also have negative attitudes and give less care to children with Down syndrome, saying all their problems are due to Down syndrome and not much can be done.
DSAN is trying to help by conducting free medical camps in key areas like ENT, thyroid screening and dental.
Adult social issues like employment, living independently, supported decision making, voting and human rights are still a far dream. No one wants to employ our children as they lack training. International Foundation for Eelectoral Systems has done a small survey on the knowledge of our children using flip charts to find out how they could be helped to be included in the electoral system.
Overall, professionals, authorities and the wider public lack awareness, maybe due to ignorance or proper dissemination of the facts about Down syndrome. DSAN is making every effort to bridge the gap and provide information and awareness to the whole of Nepal. The task is challenging and limited staff and resources are our main hindrances.