After having withdrawn its support in 6 provinces in 2015, NLR Indonesia provides direct support to 14 provinces. In 2016 NLR also guided the phasing out process in 2 other provinces, i.e. Aceh and Banten.
In several provinces, such as Papua, West Papua, North Maluku, Central Sulawesi and East Java, NLR-support to improve case finding in remote areas is still needed.
The support led to good initiatives by the health authorities to integrate activities at various levels, share information and improve health promotion. At the same time, NLR supported initiatives towards increased commitment from the local government, with the objective to eventually decrease NLR-support.
Several initiatives were undertaken to ensure further integration of the leprosy control activities with inclusion and disability activities. The whole NLR team, together with the CBM team, participated in training sessions on disability sensitization. The activities related to inclusion and disability are now mainly implemented in the provinces where leprosy control activities take place as well.
Disabled People’s Organizations (DPOs) were all trained in the ins and outs of leprosy and learned how to include those affected by leprosy into general disability programs. NLR trained several Ministry of Health staff members to improve their skills in strategic planning and mapping of disability stakeholders.
Partner organizations received lobby and advocacy training. Each DPO, CSO and self-help group participating prepared its own advocacy plan. Some of these plans will be supported by NLR in 2017.
With financial support of effect:hope (formerly the Leprosy Mission Canada), NLR Indonesia is implementing a mobile health project in Gorontalo (Sulawesi) and Banten (Java) Provinces. The project aims to increase effective disease self-management by persons affected by leprosy and to increase disability prevention by health care workers. Three platforms are used, i.e. SMS gateway, website and Facebook. The number of SMS gateway clients increased from 487 to 575 this year (updated December 31, 2016). The traffic of responses to SMS gateways shows an increase compared to Year 1 (2015), the year of implementation. There were 865 replies to the 7,757 messages broadcast in 2016. Most of the replies contain positive feedback to the platform and queries on different problems faced by clients and/or others.
The number of participants of the social media support system (Facebook) has also increased to 590 members. Compared to last year, the number of postings and comments has increased as well. The participants did not only consist of leprosy health workers and stakeholders in mLep intervention, but also included DPOs, activists and government officials and community members.
Number of new cases detected 17,202*
Proportion of new cases with grade-2 disabilities 9.9%*
Number of new cases detected in the area where we work 14,597*
Number of people receiving leprosy-training 3,775
Number of people informed/educated (awareness raising) about leprosy 10,436
Number of people from communities informed/educated (awareness raising) about general disabilities 800
Number of self-care groups supported/formed:
a) Number of existing groups (formed before 2016) supported in 2016 0
b) Number of new groups formed and supported in 2016 4
*Numbers 2015. Numbers 2016 not yet available
Number of people disabled by leprosy and other diseases trained in self-care 88
Number of Disabled Peoples Organizations (DPOs) receiving assistance from NLR 11
Number of people provided with assistive devices (wheelchairs + crutches + sunglasses + protective/ orthopaedic footwear + prostheses) 110
Number of people provided with reconstructive surgery 138
Number of people provided with microcredit 75
Number of people receiving vocational training 79
Number of direct contacts of new patients given preventive medication SDR (single dose of rifampicin) 11,434
Number of persons with disabilities acquainted with their rights 175
Number of people who received leadership training 24
In 2016, promotion materials were used to raise general awareness and to put leprosy on the agenda in other sectors. The materials were used to train Disabled People’s Organizations (DPOs), Civil Society Organizations (CSOs), for the media and in communities. People affected by leprosy and persons with disabilities do have a key role as trainers/facilitators. A media campaign was launched and 50,000 people from one district in Central Java (Purworejo district) and one district in South Sulawesi (Bone district) heard the radio message about leprosy and disability, stigma and discrimination.
In Sumenep district among 360 index cases in 2016, 302 participated in the LPEP project with a total of 11,434 contacts receiving SDR (single dose of rifampicin). In Lingat village the second follow-up visit after the start of the LPEP project was made. In Sampang, the distribution of SDR started. Due to a lack of rifampicin, its distribution was held up for several months, but resumed at the end of the year. The lack of rifampicin also delayed activities in Sumenep but these too could be continued during the last months of the year.
In 2016, NLR completed 5 years support of the innovative activity in North Minahasa DIistrict of North Sulawesi. The main purpose of the leprosy-friendly village is to reduce the leprosy burden by increasing the participation of key community members and Health Centre staff. A total of 44 high-endemic villages (15 funded by NLR and 29 by local government) implemented this approach. The number of new cases increased in the first 3 years and decreased in years 4 and 5. There were no new grade-2 cases.
The 2nd year of implementation of the Mobile health (mHealth) project in Gorontalo (Sulawesi) and Banten (Java) to improve the prevention of disabilities reached some important milestones resulting in an increased number of users of the text message and Facebook platforms. A new video for nerve function assessment through the mobile web was launched and three new clips on self-care were completed.
The need for a national survey of and data on disability were key issues discussed at the National Seminar on Disability Inclusion and Research in Indonesia in December 2016. NLR was one of the initiators of this seminar and organized it in conjunction with CBM, GIZ, DFAT-KOMPAK, the Women and Children’s Study Center (PUSKAPA) of Indonesia University (PUSKAPA UI), and the National Development and Planning Bureau (Bappenas). The seminar ensured that key stakeholders agreed upon the key points of research on disability in Indonesia as well as on which areas of research to focus advocacy efforts.
Muhammad Toha, 50 years old, is one of the determined people behind the success of the Leprosy Control Program in Lamongan district, East Java. He spent more than 15 years as Leprosy Program Manager in Brondong Health Centre, Lamongan District. He established the Pantura Sejahtera self-care group (SCG) in 1997. With his low-profile operating style, he was actively involved in finding new cases by visiting the villages, and talked with patients, their families and community leaders about leprosy. He also involved the village midwives in the discovery of new cases and monitoring existing ones. In 2014, with support of the Strengthening Participation of PAL (SPP) team, Toha encouraged SCG Pantura Sejahtera to become a self-help group. After joining the SPP-program, he also regularly campaigned for the community in a smaller group. This group is now becoming one of the model leprosy self-help groups in the district. Since joining the SPP, he feels he has more friends and colleagues to share the work with. Working as a team makes his work managing leprosy easier.
‘As member of the SPP-team, I’m no longer campaigning on my own in the village. People affected by leprosy are also joining me in the field,’ Toha said about his activities in the village. He can now turn to other tasks from the health centre without having to worry about losing control over the leprosy program. He hopes the SPP-team will continue to exist for a sustainable leprosy program in Lamongan district.
Now I am not alone anymore
The budgets for leprosy control activities and for inclusion and disability activities were both underspent in 2016. The inclusion and disability activities could not be carried out according to the budget for 2016, as most Disabled People’s Organizations (DPOs) did not have the capacity yet to do so. A number of DPOs were trained in developing proposals and fundraising in 2016. Basic training in financial management was given, and will need a follow-up. All these training activities have contributed to the sustainability of the DPOs.
The national shortage of rifampicin has hampered the implementation of LPEP activities in both Sumenep and Sampang districts. Eventually, these medicines were paid out of the 2016 NLR budgets for the provinces.
An important new development in 2017 is that NLR Indonesia will become a Strategic Partner Organization (SPO) of the Liliane Foundation. This will result in a larger overall budget for NLR Indonesia and the number of partners supported will increase from 30 POs to almost 50 POs.
Furthermore, NLR Indonesia will cut down on core assistance (routine support) in leprosy control (a decrease of about 42% in last year’s provincial budget) to focus on developing innovative approaches even more than the past years. The NLR Indonesia office will look into a potential restructuring of its operational, admin and finance departments.
The LPEP project will be scaled up and PEP ++ will be implemented as well.
The Priority Agenda for Research will follow the 4 NLR Key Priority Programs (KPPs) and other potentially important topics within disability, inclusion and rights for children with disabilities. Mapping out access to inclusive education will be part of the research agenda as follow-up to the agreed theme of LF alliance for Asia. If all goes according to plan, registration of the new local organization is planned for November 2017. NLR Indonesia will then operate with the 2 entities, i.e. the new international Memorandum of Understanding (MOU) and the local entity.