THE UGANDA DOWN’S SYNDROME ASSOCIATIION ( UDSA )

THE UGANDA DOWN’S  SYNDROME ASSOCIATIION ( UDSA )

THE UGANDA DOWN’S SYNDROME ASSOCIATIION ( UDSA )

Uganda Down’s syndrome Association (UDSA)

P. O. Box 24244 Kampala – Uganda
Tel Mobile: + 256 752 47 859 / +256 779 761 090
Office: 0414 220213
Email: udsa.org@gmail.com

Information on the Uganda Down’s syndrome Association (UDSA)

Uganda Down’s syndrome Association (UDSA) was founded in 2005, by Michael Okiro – Emadit, Joyce Achom and James Omoding as founder members of the organization and dully registered as a charitable local NGO  on 19th Oct 2006, Certificate  No 6137,  Registration No S. 5014/6639.

It is a Voluntary, Non -denominational  Non -Political, Non -Profit making, organization which is helping and  supporting children born with D and their families in four sector areas of Health, Education, Counseling, Social Welfare, and  awareness-raising

 

           Founder members of Uganda Down’s syndrome Association (UDSA)

Mr. Michael Okiro- Emadit          Sr. Joyce Achom              Mr. James Omoding

The organization a National /an umbrella body which  acts as a coordinating, facilitating and enabling body of and for individuals, groups of persons, communities and organizations/institutions involved in helping and supporting persons with Down Syndrome and their families in Uganda

UDSA is a National representative organization for persons with Down syndrome in Uganda, as well as Country representative organization of Down Syndrome International (DSi) in Uganda and operates countrywide.

Besides, UDSA is members of Africa Down Syndrome Network (ADSN)

Mission:

To develop a healthy, literate and economically secure Uganda Down Syndrome community with equity that is well integrated into the overall Uganda society.

 Vision:

To have a well organized and facilitated Down Syndrome Community that has access to specialized Health, Educational, and counseling services

Goal:

Empowerment of people with Down syndrome with a focus on children below 20 years and their families/caregivers

Association Objective and strategies

Health sector:

  • To facilitate access to specialized and appropriate Health services to children with Down syndrome by; creating awareness and linkages and, strengthening coordination mechanisms, networks and alliances, and linking them to health services providers and  meeting costs of medical services rendered to the

However, the ultimate goal is to construct a self-contained, integrated and self-sustaining specially designed and tailored health facility for children in general but with special emphasis on children with DS once the funds are available. The pediatric health facility will offer commercial services to all children in the country but the DS victims will receive free treatment at the Hospital and their costs of their treatment 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.

Education Sector:

  • To facilitate access to specialized educational and vocational skills training to children born with Down by; creating awareness and linkages, strengthening coordination mechanisms, networks, and alliances, and linking them to special needs education and vocational training services providers and meeting costs of their Education.

Uganda Down’s Syndrome Association notes that mainstream education may not be appropriate for all children with DS. It should be recognized that some children have complex and profound needs that they require support offered by Special Needs Schools. In that regard, parents and children with DS must be part of the decision making process from the beginning regarding the most appropriate educational environment, by putting the appropriate facilities and resources in place that will help support the successful inclusion of the Down syndrome children in school throughout their years within the chosen educational environment.

However, the ultimate goal is to construct an inclusive integrated and self-sustaining school facility with the intention to have children born with Down syndrome access specialized education and vocational training in an inclusive school environment and be able to achieve their full potential and lead productive lives as adults.

Counseling and Social Welfare Sector

  • To provide welfare/ counseling services to children born with Down Syndrome and their families or caregivers respectively in order to mitigate psycho-social effects on them and improve on the their care and management, to enable them reduce the stigma and vulnerability of children born with DS by creating awareness, strengthening coordination mechanisms, networks, and alliances, and linking them to counseling services providers and meeting costs of those services.

In Uganda, the birth of a child with Down syndrome to a family in itself causes a lot of family breakdowns. Husbands often accuse their wives as being responsible for the fate of their child with DS. In the process, there are a lot of family conflicts and quarrels. The situation is aggravated further in some families where the couples have also fallen victim to More often than not, these couples end up separating and this makes life of the children with Down syndrome even more vulnerable. In nutshell, there is a lot of stress and tension in most families with children that have Down syndrome and this needs to be addressed.

Our strategic goal is to mitigate the psycho-social effects of Down syndrome in children born with it and their parents or caretakers. In that regard, the project’s immediate objectives in this sector are to:

  1. Train the parents/careers of children with DS on the skills of care and management of children with DS
  2.  Train and develop Psycho-Counseling  Assistants to provide emotional and psychological support to children with DS and their families;
  3. Conduct outreach visits and offer counseling services to the affected families in particular and the general community in particular
  4. Offer peace building and conflict resolution services to families that are experiencing conflicts and v. Develop a Down Syndrome Training and
  5. Counseling Manual based on the experience in the field.

Income Generation Sector:

  • To promote income generating activities and improve the livelihoods of households and families that have or that care give children born with Down syndrome

A large proportion of families with children with DS that the organization is targeting are not engaged in income generating activities for social transformation and the poorest of the poor are not being helped at all. Hence, their productivity and household incomes are very low. Also, parents willing to take their children to school cannot do so because the fees in existing special needs education centers are very high and prohibitive.

The strategic goal therefore is to have viable and sustainable income generating projects and product value chains and the beneficiaries’ household incomes and livelihoods improved and the project well integrated

Awareness-raising:

  • To raise awareness at all levels on the magnitude and associated Health, Educational, socio – economic and development implications of Down Syndrome on the Ugandan society

This has meant that parents of the children are not mobilized for the common cause of helping their children. This is compounded by the fact that their parents/guardians are ignorant about Down syndrome and take these children as being mentally handicapped.

UDSA creates awareness on the vulnerability of children born with Down syndrome by; creating awareness, strengthening coordination mechanisms, networks, and alliances, and linking them to various service providers as well as meeting costs of those services rendered. At the heart of these, there shall be strong elements of advocacy and lobbying for the victim’s health, educational and socio-economic welfare.

Main objective:

The main objective   is to promote and protect the rights of persons with Disabilities, specifically for persons with Down syndrome in Uganda and Africa

Specific objectives:

  • To enable people with Down syndrome have access to quality Health, Education, and skills training so that they can live an independent life as adult
  • To create awareness on the rights of persons with disabilities so that they can have increased knowledge and responsibilities for self-reliance

Stakeholders and Strategic Partners:

Our stakeholders and strategic partners are: the Local Community; Central and Local Governments; Civil Society; Private Sector and Development Partners:

Board of Directors

S/ No Names Profession Designation
1 Dr. Thelma Awori Consulate  General of the Republic of Liberia  to Uganda  Patron
2 Mr. Osude Benard Bachelors in Graphics / design / Management Senior Member
3. Mr. James Omoding Planning and human  resource Development / Founder Chief Executive Officer
4. Sr. Joyce Achom Registered  Bachelor of Science in nursing/midwifery and  founder Health Coordinator
5. Mrs. Kantono Jane Bachelor in  Special Needs education Education  Officer
6. Mr. Eseru Stephen Bachelors in accounting finance / Audit Accounting Officer
7. Dr. Dan Tumwine Masters in Pediatrics Health Officer
8. Mr. George Basil Okuda

(self-advocate)

Diploma in IT and secretarial services  (Self-advocate) Executive Secretary
9. Mrs. Zainab Birungi Bachelors in Law ( Lawyer ) Legal Officer
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