ESAU CAPABILITY STATEMENT 2013
Epilepsy Support Association Uganda is an indigenous NGO that brings together people with epilepsy, their families and other people to work towards eliminating the social stigma attached to epilepsy and create an environment in which epilepsy is better understood so that those who live with it can exercise their full potential and enjoy equal rights.
Established in 1997, the Association has been involved in advocacy and capacity building of the people with disabilities with emphasis on People With Epilepsy (PWE). The association mobilizes PWE to form support groups through which they can meet to share experiences, offer each other mutual support and lobby for better services at both sub county and district levels. The Association is located in Wakiso-off Kayunga Town on Hoima Road, plot 695 Gombe, 12 km from the city centre.
The association is democratically governed by the members who elect a local executive committee at sub-county and district levels. Each district branch sends two delegates to a national assembly that elects a national board. At the helm of the association is the board which is the policy making organ of the association. The board is then responsible for recruiting the staff that runs the secretariat.
Areas of Operation
ESAU currently operates in 30 districts of Uganda distributed in all the 5 regions of the country. The districts include Apac, Arua, Bushenyi, Hoima, Jinja, Kabale, Luweero, Masaka, Oyam, Mpigi, Moyo, Soroti, Ntungamo, Amuria, Kumi, Katakwi, Kaberamaido, Nakaseke, Adjumani, Sheema, Buhweju, Bukomansimbi, Gomba, Butambala, Lwengo, Kole, Kalungu, Kamuli and Sembabule.
Vision: A Ugandan society in which epilepsy is understood and People With Epilepsy (PWE) are treated with dignity so that they can exercise their full potential and participate in all development processes.
Mission Statement: To become the leading Organisation that empowers people with epilepsy to participate in development processes through advocacy, networking, research and documentation.
ESAU employs 7 full time staff, 2 part time staff and supports 2 volunteers. The staff is headed by a National Director who is a medical social worker and has over 18 years experience in senior management, organisational development and finance. There are 2 senior programme officers who have more than 10 years in project planning and management, monitoring and evaluation, resource mobilisation and proposal writing, grass root advocacy, community work and counselling skills. The Association has one finance officer who is dependable and experienced in multi-donor funds management and she is a certified public accountant, with ACCA and has practicing experience of more than 5 years. ESAU also employs a Danish Development consultant who is a part time staff of the organisations. The other 2 programmes staff have 3 years experience in community work, are graduates and human rights activists.
ESAU mobilizes people with epilepsy, their parents and guardians to form support groups. Through these groups, persons with epilepsy learn from each other and share experiences on how to positively live with epilepsy. They share problems and challenges and learn from each other how to solve such problems. Groups also create a sense of togetherness and members are also equipped with skills on how to become economically self supporting by engaging in income generating activities. The Association has trained 402 community volunteers in total, equipped them with bicycles for ongoing awareness raising, to participate in community mobilization, offer simple counseling and referral for PWE
ESAU organizes its members to elect its leaders both at Sub County and District levels. The groups are encouraged to register with their respective Subcounties as Community Based Organizations (CBOs). In these groups members are trained in Advocacy, leadership skills and income generating activities, finance, reporting, group dynamics, records management, mobilization skills and simple counseling. PWE have been empowered to be able to change their lifestyles which have often been characterized by abject poverty due to isolation, social discrimination, stigmatization, marginalization, fear to participate in economic activities and low levels of education compared to other people in the communities.
Lobby and advocacy
ESAU lobbies and advocates for the rights of people with epilepsy like the right to regular medication, education, ownership of property. ESAU engages Districts, and central Government bodies to take epilepsy as a priority and to accept PWE in the communities as important citizens. The Association empowers sub county and district branches to advocate for better service delivery and enhance their capacity to hold duty bearers accountable.
Counseling and Referral at the secretariat
ESAU offers counseling about epilepsy, seizure management and how PWE can positively live with epilepsy. We also provide information on education and employment. At the secretariat we refer PWE to public Hospitals and Health centers for diagnosis, medicine and treatment. The secretariat also has a documentation centre and periodically publishes a magazine outlining topical issues on epilepsy in Uganda. The Secretariat has become a more visible referral point for those seeking counseling on aspects of epilepsy and their lives.
ESAU is a member of Voices for Health Rights Coalition (VHR) and has managed to network with NUDIPU (an umbrella organization that brings together all disability organizations in Uganda), and Ministry of Health. ESAU has established and strengthened networks such as Human Rights Network (HURINET), NGO Forum and Uganda National Health Consumers' Organization (UNHCO). It is also a member of International Patients Organization (IAPO). ESAU is a member of the International Bureau for Epilepsy (IBE) and currently holds the post of the Vice chairperson of the African regional Commission of the IBE.
ESAU has been supported by DANIDA through the Danish Epilepsy Association for the last 15 years but has also run mini projects facilitated by National Union of Disabled Persons of Uganda (NUDIPU), National Union of Women with Disabilities of Uganda (NUWODU) Action on Disability and Development(ADD) and Abilis Finland. The Association has experience in handling multi donor funds for more than 15 years.