What we have done and what we can do
The Rwanda Down Syndrome Organisation (RDSO) was established in late 2016, the first organisation of its kind in Rwanda. Over the past year DSi has been providing financial assistance, advice and information to support RDSO’s growth as an organisation with an increasing range of activities.
With the money provided RDSO has rented an office in Gasabo District, Kigali, employed a permanent secretary and furniture and equipment for their office including two computers. RDSO has also made excellent progress in a number of areas including:
Identifying people with Down syndrome
RDSO has been reaching out to people with Down syndrome across the country – they have links with hospitals who refer on parents of children with Down syndrome. So far they have registered over 400 people with Down syndrome, many of whom either had not previously had any contact or support.
Running a drop-in service
RDSO has been running a drop-in service for people with Down syndrome and their families at their office. Many of the people visiting them for the first time have a low level of understanding of what Down syndrome is, so RDSO provides them with information and support.
Raising awareness about Down syndrome
RDSO have been working to increase levels of awareness and understanding of Down syndrome amongst the general public, which is very important to combat negative attitudes and discrimination. RDSO board members have been on local radio multiple times talking about Down syndrome and their work. They are also producing information leaflets about Down syndrome to be distributed to the public.
Parent support groups
RDSO are organising support groups for parents of children with Down syndrome and have had a few meetings of the first one. These support groups provide a valuable space for parents to share experiences, support each other and receive information about how best to care for their child.
Eric Ishimwe is a 19 year old man with Down syndrome. He is very eloquent and loves to dance. He never got a chance to complete primary school because his classmates used to mock him. He would like to get a job and earn some money but he does not think people see him as capable.
Through RDSO, Eric has started to advocate for the rights of people with Down syndrome and he hopes that one day the society he lives in will look past his condition and see him for the person he is.
"New Organisation Set Up" - project summary
The focus of this project is supporting the establishment and development of the Rwanda Down Syndrome Organization (RDSO), an organisation with a mission to advocate for the rights of people with Down syndrome in Rwanda and provide support and advice to them and their families.
In Rwanda people with Down syndrome and their families are often isolated and lack important information about key issues affecting their lives, such as health conditions. They struggle to participate in society due to negative attitudes and poor understanding of their value and potential. Access to basic healthcare and education is limited, and people with Down syndrome and their families struggle to voice their priorities and demand their rights be respected.
How will this project solve the problem
The benefits of an organisation focussing on improving the lives of people with Down syndrome are manifold. RDSO will form a key source of information and support for people with Down syndrome and their families, as well as creating spaces for them to meet and share advice and experiences. It will also play an important role in advocating and lobbying for the rights of people with Down syndrome, as well as supporting them and their families to vocalise their needs and rights.
Potential long term impact
In the long term a strong organisation with a focus on advocacy and lobbying will be able to influence the government to better protect the rights of people with Down syndrome, guaranteeing they have proper access to justice and their other rights as citizens. It will also be able to influence existing systems such as education and health to become more inclusive of people with Down syndrome, as well as providing support for them to participate fully in society and lead fulfilling lives.
Life in Rwanda
In Rwanda people with Down syndrome face challenges in all aspect of their lives. Societal attitudes towards people with Down syndrome are generally very negative, and parents of children with Down syndrome often hide them because of shame and a lack of information and awareness about Down syndrome. People with Down syndrome struggle to access education and often live at home for their whole lives, remaining dependent on their families.
Post-natal diagnosis of Down syndrome and information available for parents
Due to a lack of information and proper training, health professionals frequently misdiagnose children with Down syndrome. There is only one hospital in Rwanda that can perform a Karyotype test to confirm that a child has Down syndrome. Not all parents can afford the test or are able to travel to the hospital from remote areas, so many children have not been tested. Fortunately the situation is changing, and pressure from parents and health professionals has led to diagnostic testing being covered for many people by health insurance.
Once a child has been diagnosed with Down syndrome, health professionals often deliver wrong and discouraging information to parents, which can have a negative effect on their relationship with their child.
Acceptance of children with Down syndrome in families and wider society
Children with Down syndrome are often not fully accepted in their families or in Rwandan society as a whole. This is due to the lack of education and information about Down syndrome. Some families still believe a child with Down syndrome is caused by witchcraft, while others are ashamed of their children and keep them isolated. It is rare to see a child with Down syndrome on the street and people tend to stare when they see them. There are lots of campaigns for child protection but most of them are aimed at children’s rights in general, and fail to account for children with Down syndrome.
Early childhood development
Due to lack of information, support and specialized services, children with Down syndrome are often left behind during early child development. This means that their development is delayed, which has a huge negative impact as they grow up.
Schools in Rwanda do not provide the support required for children with Down syndrome to be included in mainstream education. Those that do attend mainstream schools tend to drop out of school at a very young age due to a lack of understanding of their educational needs.
There are a limited number of special schools and they are generally very expensive. Those parents that can afford the fees for special schools often find that they have inadequate educational programmes for children with Down syndrome.
Rwanda has improved access to care for the population by promoting community based health insurance (CBHI), which now covers more than 90% of the population. This has allowed people with Down syndrome to access healthcare. Unfortunately, apart from genetic and cardiology diagnosis, other medical supports like cardiac surgery are still unavailable for people with Down syndrome.
Adult Social Issues
Young adults with Down syndrome have not normally been prepared to live a full independent life style, so continue to depend on their families throughout their adult life. Rwanda does not stop people with intellectual disability from voting in elections, but has not adapted the electoral process to facilitate the participation people with intellectual disabilities. There is still a lot of work to do to realise their rights. People with Down syndrome do not try to look for jobs because they do not believe in themselves, and society assumes they are unable to work.