1. Hello Mr Okiro Emadit! Would it be possible to tell us more about your foundation please?
Uganda Down syndrome Association was first formed in 2005 by Michael Okiro Emadit, Sr. Joyce Achom and James Omoding as founder members and officially registered as an NGO in 2006. The project works in four main sector areas of, Health, Education, Income Generation and, Counseling and Social Welfare Services. Awareness raising, lobbying, advocacy, and environment are all cross cutting themes in our work.
The Uganda Down’s Syndrome Association (TUDSA) Is duly registered under the Non-Governmental Organizations, Registration Statute. 1989 as a local NGO, Registration No S. 5914/6639, Certificate No. 6137, with its operating countrywide and regional branches in Soroti and Amuria Eastern Uganda, Northern Uganda in the districts of Gulu, and to the districts of Fort portal Western Uganda
UDSA acts as a coordinating, facilitating and enabling body of and for individuals, groups of persons, communities and organizations/institutions involved in helping children with Down syndrome and their families. The organisation is an umbrella body which brings together all Down syndrome organisation in Uganda . It is a charitable, non-profit making, non-political, non-denominational, voluntary Non-Governmental Organization.
The project target group is children below the age of 20 years that have Down syndrome and their families or caretaking households. Our special focus is on poor households and families that cannot afford most of the basic social services.
For children, the project facilitates their access to and supports them in receiving Specialised Health services, specialised education and vocational training and counseling services in order for them to be able to lead meaningful and productive lives as adults.
And, for their families /households, the project promotes and supports income generating projects and product value chain development in order to contribute to their families' improved household incomes and livelihoods. In addition, the project provides counseling and social care services to them in order to mitigate the psycho-social stigma and effects associated with having a family members with Down syndrome.
2. How has it evolved in the past 5 years?
For the past 5 years, the organisation has been able to address the main Challenges as follows:
UDSA has been able to link children with DS to have specialised Health services and especially those who need heart surgery. We have assisted ten (10) children who have successfully had heart operations in India and recently at Barcelona, Spain sponsored by Chain of Hope.
The number of children with DS now attend both mainstream and special needs schools has kept on increasing yearly, than when we started despite the fact that parents did not bother to take these children to school thinking that their fate is sealed at birth, and that they can learn and increasing skills in the same way as other children
The major problem faced by children born with DS in Uganda by then when we formed the organisation was neglect by parents, relatives, caregivers and state institutions. There was little parental care of these children as parents/guardians neglect them and were in most cases confined indoors under unbearable conditions. Also, local communities always reject them and there was segregation. However, through counseling and education to parents and community, this trend has gradually changed over time.
UDSA has also engaged families with children with DS especially mothers in tailoring and crafts project in order to improve their household incomes so that they can support their children with some of the required items like scholastic materials uniforms etc.
Before formation of UDSA in 2005, there was very little input from Government, NGOs and local communities into these children's education, health and socio-economic well being. Besides, there wasn’t any single organisation or group of individuals that was directly involved in assisting people with Down Syndrome.
This lead to lack of coordination and collaboration between and amongst families of children with DS. This therefore meant that, parents of the children were not mobilized for the common cause of helping their children. This was compounded by the fact that, their parents/guardians were ignorant about DS facts and issues.
This had partly been overcome by our awareness campaign especially on Down syndrome Month (October) ever year and 21st March, World Down syndrome Days. However, Lack of funding has been an obstacle to a much more countrywide campaign on this.
3. What is it like to have Down syndrome in a country like Uganda and has society changed?
To have Down syndrome in Uganda is perceived as a curse in some families. Others misunderstand it as a curse from God, and in Central Uganda i.e. Buganda region where I am based, most people think these children have been sacrificed to get riches. However a majority of the people confuse it with mental illness or are called (Basiru) in a local language meaning they are stupid because of their slow learning capacity.
Yes , the society that we have reached have changed , while a majority of the unreached still have the same thinking , especially the rural areas where the illiterate majority stay...
4. What would you say are the biggest challenges right now for a person with Down syndrome in Uganda?
The biggest challenges for persons with Down syndrome right now are lack of early intervention programs i.e. , Therapy and Education at pre-school age , between the age of 0 – 5 year which are the most important in the early development of a child with Down syndrome . While there are very few existing centers that offer early intervention programs, they are very expensive that a common person cannot afford leaving it to the rich only
There is very little input from Government, NGOs and local communities into these children's education, health and socio-economic well being as most of them tend to concentrate on other areas i.e. Orphans, widows, physical and mental disabilities leaving Down syndrome unattended to.
To my observation, a majority of People with Down syndrome have not been able to get married and to independently have their family life to produce and this pauses a great question to the public thinking that they are abnormal
5. You are one of the signatories to the United Nations petition that declared March 21st as World Down syndrome Day. It must have been a really important day for you! Could you tell us more about it and what the main challenges were at that time?
Definitely it was and still an important day for me. To begin with the main challenges that time was to find an International organisation that I can represent in Uganda. The idea of helping children with DS came to my mind in the year 2000 when I was introduced to Down syndrome International (DSi) by a friend Margret Bell.
Through that time I trying until 2010 when I had the privileged to be recognized as a country representative of DSi in Uganda and I was very happy about that and I become very active in working with Down syndrome International
In 2012 Oct, Andrew Boys launched a petition to the UN to recognize DS as a worldwide problem that needed attention, he was given a period of 1 month (November) to collect the signatories worldwide. The task was to convince people to sign the petition, however by the end of the period we successfully had 12,000 signatories mine inclusive.
In Nov, signatories to the petition was sent to the UN General Assembly and consequently the motion was passed and 21st March was designated World Down Syndrome Day. After the success, Andrew Boys allocated me to work as a member of the WDSD organising committee till to- date and that was a very big achievement
Later on because I speak Kiswahili as well, DSi also appointed me to be a representative , Uganda and East Africa , UN Radio Kiswahili program to be interviewed on Issued affecting children with DS ion WDSD ( 21st March ) since 2017
6. What are the main changes you would like to see in Africa concerning Down Syndrome?
The main changes that I want to see in Africa concerning Down syndrome are:
7. What would be the typical life of a person with Down syndrome in Uganda (even though everyone is different)?
To someone who would like to help; I would love to work in partnership to help my organisation to construct an Inclusive self contained, integrated and self sustaining specially designed and tailored Training Institute and or Center which offers specialised Health / Educational / Skills training to children in general but with special emphasis on children with Down syndrome.
The health and education sectors will offer commercial services to all children in the country but children with DS will receive free treatment and education at the hospital and School respectively. The costs of their treatment/education being met by internally generated funds from able paying customers and other donations that will be raised from well wishers for the DS children’s cause.
9. Do you believe that people with Down syndrome would like to hear from other people with Down Syndrome from other countries and continents? Why?
10. Does your foundation work with other foundations in the region or worldwide?
Yes, UDSA work with Both International and National organisations i.e
11.How could the D2020 World Project help you raise awareness or achieve your future goals?
The 2020 World Project can help me raise awareness or achieve future goal by working in partnership financially and or materially if need be
12. One last message you would like to share with all of us?
One message I would like to share with all of you is, expressing my thanks to you Edward for the initiative and the work you have done in collectively bringing all ideas from all over the world together, and to create one stop center of learning and expressing ideas for the common cause to improve the lives of persons with Down syndrome
Finally, I would love to see D2020 World Down Syndrome recreation center established, where all persons with Down syndrome, their family members all over the world can meet once a year to have fun, Dancing and doing all the amazing things that they can do to enjoy themselves.
“I am very sure this can be the best memorable service that the world would have offered to these children in their lives” if the idea is thought of.
Our main goal:
Some parents have been treated as outcast as in some communities, having a disabled child is seen as witchcraft hence, some children are hidden from the eye of the public hence they end up deteriorating. When it comes to education, the curriculum is not disability specific and assumes the methodologies can be applied across the spectrum of intellectual disability. Though there is a curriculum for mentally challenged learners, this curriculum assumes that all children with mental challenges are similar in terms of their learning challenges. A research has been done by DSSK with the book on our website “Critical Analysis on Access to Education for PWIDs in Kenya” https://drive.google.com/open?id=1-bJ623wfDL2KN8uvS_465poHgEEAFt73 .
We currently have not been able to work with other organization in Africa. We have members from different East African countries.
3. How would you compare the situation in Kenya compared to other neighboring countries?
4. The two main languages in Kenya are English and Swahili. During my world tour I have seen that people are often surprised that people with Down syndrome can speak two languages. In India some could speak up to four! What is Down syndrome in Swahili and could you please tell us how common it is for people with Down syndrome to speak both languages?
No Swahili word for Down syndrome. “Udumavu” has been used quite a lot by the media, but we don’t find it as an appropriate word for Down syndrome.
Language and communication capabilities varies on the background and exposures as well.
5. What are the main goals of your foundation and how are you achieving them?
Our main goals are:
i) Create awareness in all sectors of the general public, healthcare professionals, education professionals, and human rights organizations.
We have been able to work with media houses and our social media pages to enlighten, educate and create awareness all over the nation about Down syndrome. We have been working with paediatricians, cardiologists, for the purpose of monitoring the children and giving proper medical advices to parents and caregivers.
We are members of National council of people with disabilities (NCPWD) and through them we are able to penetrate the government bodies in regards to the UN-CRPD and to fight for proper quality education for people with Down syndrome.
ii) To offer support and assistance including legal, counselling, information and networking to persons with Down syndrome, parents and caregivers.
Our current program- Access to justice for people with disabilities, has spear headed the fight for justice for people with intellectual disabilities through the legal systems in Kenya. We have a WhatsApp platform with well-wishers, doctors, counsellors, guardians and parents for information sharing purposes and counselling. The WhatsApp group has been an open space for parents to express themselves, it has been more of a shoulder to lean on especially during this hard times of COVID-19 pandemic.
iii) To affiliate and network with local and international organizations with objects and purposes similar to those of the society.
We are involved with local organisations (UNDPK, NCPWD, CDRA, all working for a better inclusive society for people with disabilities). We are also members of an international organization, Down syndrome International (DSI), with planned upcoming project for our youths with Down syndrome.
6.Your foundation is based in Nairobi. How does it spread your message throughout the whole country?
The foundation is based in Nairobi but we cut across all the counties in Kenya. We have members from all over the country, our main agenda for this year being getting a representative in each county, we hope to achieve this regardless of the COVID-19 situation.
7.What would you consider as the main challenges for people with Down syndrome in Kenya?
Main challenges for people with Down syndrome in Kenya.
8. How would you describe Down syndrome to someone who has never heard about it? What are the most common questions?
We try to use the simplest words possible, through the native languages, Swahili and English. Mostly we describe it as: a chromosomal disorder in which a person has an extra chromosome 21 caused when abnormality occurs during cell division. This error causes delays in achieving milestones and intellectual disability.
9. As a brother of someone with Down Syndrome, I would have liked to have shared more feelings and stories about Down syndrome with other brothers and sisters. During this world tour I have also seen that foundations do not often think about that brother-sister relationship. What would you do to emphasize it?
Many organizations focus on those with Down syndrome and forget their siblings. Siblings should be involved in workshops, fun days and have an advocacy training project for those with DS and their siblings included.
10. Do young adults have the possibility to work in Kenya? How does your foundation prepare them for the future?
Yes they do. Private sectors are more welcoming when it comes to employing those with special needs compared to the public sectors. The organization needs to collaborate with the private sectors and push for employment for our adults with DS. Some have already enrolled into self-employment, example, we have adults who are good farmers and they get an income from it, this is with the support of the guardian.
A self-advocacy help program through our partner DSI, which will help them fight for their rights and also boost them in terms of being successful in seeking employment.
11. My sister is always surprised when she hears about people with Down syndrome in other countries. I would actually love for her to meet people with Down Syndrome from all over the world. Is it also the case with some people in your foundation? Do you think that connecting people with Down syndrome from different countries would be beneficial?
12. Does our future generation know about Down Syndrome? How do schools try to include people with Down Syndrome?
A higher percentage doesn’t know. Awareness creation is needed even in schools so as to educate many of them. We advise parents to take their children in integrated schools, for the purpose of them not deteriorating more compared to those who attend special schools. Special education here is more for those with physical challenges than those with intellectual. In integrated schools with understanding educators, they tend to perform better.
A number of schools here have include people with Down syndrome.
13. What would you say to someone who would like to give more visibility to Down syndrome in Kenya?
14. One last message for us or for our followers?
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