The Danish Disability Fund
1. Cover page
J.no. ( to be filled by DPOD)HP
largeR development project &Collaborative project involving MULTIPLE ORGANISATIONS
(up to 5 million DKK.)
Applied for (please tick):Larger Development Project / X
Collaborative Project
Project title: / Keeping Epilepsy in the Light; Consolidating Achievements and Capacity of ESAU.
Applicant Danish organisation (financial responsible) / Dansk Epilepsiforening (DEA)
Store Gråbrødrestræde 10, 1. — DK-5000 Odense C — Tel: +45 6611 9091 — www.epilepsiforeningen.dk
Other Danish partner(s), if any: / N/A
Local partner organisation(s): / Epilepsy Support Association Uganda (ESAU)
Country (-ies): Uganda
(Districts of Jinja, Masaka, Luwero and Gomba) / Country’s BNI per capita: USD 440 (2012 Estimate by WB)
Project commencement date:
1st May 2015 / Project completion date:
30th April 2018 / Total number of months:
36 Months
Contact person for the project:
Name: Per Olesen, Director — Email address: — Telephone no: +45 6611 9091
Amount requested from The Danish Disability Fund: DKK 2,493,737 / Annual project cost:
2015: 850,785 / 2016: 879,989 / 2017: 568,580 / 2018: 194,385
Is this a re-submission? (i.e. a revised application, which has previously been submitted)
[X] No [ ] Yes, previous date of application:
Is this a:
[X] A new project? [ ] A project in extension of another project previously supported by DPOD, Danida or others?
In which language should the response letter from The Danish Disability Fund be written (choose one):
[ ] Danish [X] English
Summary of the project
Projektet har til formål at afslutte det samarbejde mellem DEA og ESAU, som indledtes i 1998. Det er målet at sikre konsolidering af ESAU’s aktiviteter gennem udvikling og replikation af god praksis, erfaringsindsamling samt uafhængighed af økonomisk støtte fra DEA. Projektet ligger sig tæt op ad ESAU’s strategiske plan og har indarbejdet anbefalingerne og forslaget til exit-strategi fra den netop afsluttede review og kapacitetsundersøgelse. Der arbejdes således med 3 delmål i projektet: 1: Organisationsudvikling med fokus på konsolidering, fundraisng og dokumentation af ESAU nøgleaktiviteter, 2: National fortaler virksomhed og styrkelse af eksterne relationer, samt 3: Oplysning og information med et særligt fokus på unge, både med og uden epilepsi. Identifikation af donorer, udarbejdelse af projektforslag og dannelse af strategiske alliancer vil blive højt prioriteret, hvorfor ESAU fokuserer på en mindre geografisk dækning og direkte målgruppe.
Date / Person responsible (signature)
Place / Person responsible and position (block letters)
2. Application text
A. THE PARTNERS (indicative length 3 pages)
A.1 The Danish organisation
Danish Epilepsy Association (DEA) was founded in 1962 as a national, non-profit patients' organization its mission being to improve the lives of people with epilepsy (PWE) through information about epilepsy and its consequences as well as to support and/or start initiatives that improve treatment, opportunities and conditions of life for PWE’s. DEA has a membership of approximately 5.300 persons organized in 12 branches who support the organizations work. DEA’s focus is very diverse from social activities for PWE’s at both national and local levels to professionalized lobbyism to influence legislation and allocation of national funding for example to treatment of epilepsy. DEA publishes a printed newsletter in more than 8.000 copies 4 times a year, runs a modern website, and communicate through Facebook and other social platforms. DEA supports individual members on issues of social or health-related questions and organizes education on mastering epilepsy for PWE’s as well as skill-training with regard to epilepsy for a variety of professionals who deal with PWE’s in their daily work. DEA also supports the research in epilepsy. DEA is engaged in international work and is a member of International Bureau for Epilepsy (IBE). DEA has a 15 years long partnership with Epilepsy Support Association Uganda (ESAU), running various projects together. The most recent projects − funded by Danida and DPOD respectively − were "Bringing Epilepsy Out of the Shadow in Uganda - phase 3" and "Creating a Better Understanding of Epilepsy in Northern Uganda through Forum Theatre". The collaboration with ESAU is the first and only DEA project taking place in a developing country.
Exchange visit between Uganda and Denmark has been used in a deliberate and targeted manner to build capacity and ensure popular rooting and involvement of national board members and members in general from both organizations. ESAU was formed with the assistance of DEA, and the approach has been rights based throughout. DEA has vast experience in establishing and running local, democratic branches as well as doing advocacy in a Danish context. This experience has been shared with ESAU and DEA's approach has been to act as a role model for the development of ESAU. Thus, DEA’s contribution – and comparative advantage – has centred on good practices as concerns how to run an organisation (keeping democratic principles in mind), and involving the Board (including the importance of rotating leadership).
DEA doesn’t have an actual project department. Project management has taken place with support from a Danish consultant based in Uganda, and by using work hours taken from the Chairperson, the accountant and, previously, the director of DEA. Currently, it is the DEA Chairperson in Denmark, who is in charge of many of the contacts in Uganda, in close collaboration with the Danish consultant in Uganda and the DEA Accountant in Denmark. DEA's person responsible for communication has also been active in informing about the work in Uganda. In connection with the third phase of the project titled “Bringing Epilepsy out of the Shadows", funds have been allocated to a Danish consultant in Uganda with specific Terms of Reference. DEA also keeps a close relationship to DPOD's advisors and to the DPOD Representative in Uganda to get on-going advice in regard to the cooperation with ESAU.
DEA’s chairperson has been involved in development work since 1997 supporting the initiation of ESAU and has in-depth knowledge about Uganda and epilepsy. From her political work in the Danish disability movement she has knowledge on political dynamics of running user-governed membership organizations, lobbing and advocacy as well as on disability rights. The Danish consultant in Uganda has more than 15 years of experience in project management and organisational development from a Ugandan context. See TOR incl. CV attached as annex 16.
A.2 Other Danish partners (only to be filled if applying for a collaborative project)
N/A
A.3 The local partner organisation
Epilepsy Support Association Uganda (ESAU) is a national organization bringing together about than 10,000 members in Uganda. It is estimated that 60 per cent of the membership is persons with epilepsy (PWE) while the rest are relatives and guardians of persons with epilepsy. ESAU started in 1997 as a small support group of PWE’s at a regional referral hospital in South Western Uganda. Today ESAU is covering 145 sub-counties in 42 districts of Uganda. ESAU developed from a cluster of support groups of patients seeking treatment for epilepsy to a structured organization, governed and controlled by persons with epilepsy themselves. ESAU is the only legitimate organisation of PWE in Uganda; therefore ESAU is working to meet the specific need of mobilizing people with epilepsy. From 1998 to 2004, ESAU work was centred on establishing organizational structures and ensuring registration as a national NGO with the vision to make Uganda a society in which Epilepsy is understood and PWE’s are treated with dignity so that they can exercise their full potential and participate in all development processes. Since 2003, ESAU has been implementing three DANIDA funded projects submitted through its partnership with DEA. In 2012, ESAU prepared a new 5 year strategy, based on input from a consultant. The strategy has five objectives. These emphasise (i) Awareness; (ii) Advocacy; (iii) Drug bank support to branches; (iv) Research and (v) Organisational Development. This project is designed around strategic objective i), ii) and v). See Annex 3 for more information about ESAU's Strategic Plan.
The overall conclusion from the newly concluded review and capacity assessment of ESAU is that the organisation is able to point to concrete achievements as an organisation. From being virtually non-existent in the late nineties, ESAU is today recognised as an integral part of the disability fraternity in Uganda and as a lead organisation in providing information on epilepsy; it forms part of the national umbrella NUDIPU, and is taken into account in the umbrella’s advocacy work. ESAU has been in charge of a total budget of DKK 14,825,496 during the 10 years of Danida funding. In a recent review conducted by a Swedish section of Ernest & Young on behalf of the Swedish-financed Maternal Health Project where ESAU is an implementing partner, it is concluded that ESAU has the necessary capacity in regard to financial management.
ESAU functions democratically; general meetings are conducted annually in line with the NGO regulations in Uganda and the latest General Assembly (held every 3rd year) was in April 2013. Constitutionally, ESAU has a limit on how long a board member can sit on the Board and in April 2013 three new members joined the ESAU National Board of Directors that counts a total of 7 members and two reserve members. The constitution further states that 4 of the 7 board members must be persons living with epilepsy which is implemented. ESAU has 20 District Branches covering 42 of the 112 districts in Uganda. Each of the 20 District Branches sends 2 delegates to the National General Assembly. The lowest ESAU structure is the Local Branch (also called Sub-county branch ). At this level persons with epilepsy and their relatives are mobilized and brought together to constitute the local general assembly. The chairperson, treasurer and secretary of each local branch join with other delegates from local branches covered by the same District Branch to form a district assembly that elects a district executive of 7 members and two national delegates. See the democratic structure of ESAU in Annex 5.
Day to day management is taken care of by a small secretariat placed 20 km outside the capital in an office building that is constructed and owned by ESAU itself since 2012. The staff is already small, having a national director, a programme officer on organisational development, an accountant and some support staff. Previously, the staff included eight persons, but a re-structuring took place in recent years due to financial constraints. The national director is responsible for overall supervision, management and monitoring of all project activities. He has a master’s degree with more than 14 years’ experience in managing development projects. The project officer has a degree in development fields and diplomas in project planning and management as well post graduate diplomas with more than 7 years’ experience in implementation of development projects. The accountant is responsible for ESAU’s finances. She is a certified public accountant with more than 10 years’ experience in management of project finances.
ESAU has succeeded to link up with eight organisations in the SIDA-supported and financed Maternal Health Project as part of the coalition titled Voices for Health Rights. The coalition has been used as springboard for advocacy on needs regarding health staff. ESAU also has good relations with UPPID and Mental Health Uganda. ESAU has its own representation on the board of both NUDIPU and NUWODU. There are examples of collaboration at district level, where NUDIPU has supported ESAU members in accessing the Special Grant for PWD. At the national level ESAU has taking the lead in the establishment of a joint Fundraising Taskforce trying to encourage coordination and joint fundraising between NUDIPU and its member organisations. ESAU also has good contacts with, among others, the Ministry of Health and the Ministry of Gender, Labour and Social Development. Internationally ESAU is a member of, International Bureau for Epilepsy (IBE), International League against Epilepsy (ILAE) and International Alliance for Patients Organizations (IAPO).
ESAU activities are centred on awareness raising about epilepsy and mobilization of people with epilepsy and relatives into support groups (local branches). After mobilization building capacity of the membership is crucial. Lobbying and advocacy is carried out on various levels, but mainly at the district level. ESAU also offers counselling and referral to individuals and families. Finally, networking both locally, nationally and internationally has always been given priority.
A.4 The cooperative relationship and its prospects
The co-operation between DEA and ESAU is known by DPOD but not by the Disability Grant Committee.
The recent project implemented with support from DPOD was MP276 “Creating a better Understanding of Epilepsy in Uganda through Forum Theatre”. The details of the just concluded Danida project are "Bringing Epilepsy Out of the Shadow in Uganda, phase 3. (J.nr. 104.N.535.b.1)
DEA and ESAU have worked in partnership since 1998. Danida and the Disabled People’s Organisation - Denmark (DPOD) have financed three large and four smaller projects respectively. After two small projects (1998-2004) funded through the DPODs mini-programme, a first large project (total budget 3.6 million DKK) funded by Danida was approved, titled “Bringing Epilepsy out of the Shadow Phase I”. Two other phases followed from that project. They have in common that they focus on awareness-raising, advocacy at local level, ESAU organisational development and expand ESAU a little more with each project. An overview of the projects carried out between the two partners can be seen in annex 6. Currently ESAU has one donor part from DEA being the SIDA funded alliance Voices for Health Rights. The new project agreement is for 3 years starting by 1st of April 2015 and the support for 2015 about DKK 250,000 per year covering two ESAU branches, one in Western Uganda and one in Eastern Uganda.
According to the just concluded Review the key experiences and results achieved from the DEA-ESAU cooperation includes:
(1) Increased awareness on epilepsy: Before ESAU and DEA began their collaboration; most persons with epilepsy (PWE) suffered from low self-esteem and avoided talking about the condition. Testimonies from members at all levels stresses that one of the key changes has been the fact that they now refer to their condition, explain it to others and ask for the medication needed to control it. Parents explained that they now send the children with epilepsy to school and that the teacher is aware of the child’s condition. Likewise, the information pamphlets, the training of volunteers and the information provided to youth and teachers at schools has contributed to a better informed society on issues related to epilepsy. The acceptance of epilepsy as a disability that can be controlled, and not a result of witchcraft, may in fact be rated as one of the most important results, which ESAU and DEA – together with other stakeholders – contributed to achieve.