The mid-term evaluation of the NHR Brazil program in March 2015 led to more focus in the scopes of projects as well as the geographical areas in 2016, resulting in a more effective use of the available resources. A total of 18 field projects were supported in 6 different states in 2016. Important progress was also made in the organization’s transition to a local NGO, which is expected to come into effect in 2017.
The completion of an on-line leprosy reactions database in conjunction with the Rondônia state government for the monitoring and management of medications and clinical aspects; unparalleled in Brazil.
Some interesting results from the field projects:
The creation of 13 inclusive self-care groups (SCGs) that join people affected by leprosy and those with disabilities, neuropathies, neglected tropical diseases (NTDs) and/or diabetes/hypertension.
An NHR Brazil-supported, ongoing project in conjunction with MORHAN (a social movement led by people affected by leprosy) and the State University of Pernambuco works to improve the conditions of a community that sprung up around a trash landfill. Through increased opportunities and municipal partnerships, cooperative members have increased their income by €25 to €160 per week.
A team from the University of Pernambuco was successful in creating two insole prototypes using 3-D polyurethane printing.
1,314 people with leprosy and disabilities were acquainted with their rights – this reflects the larger focus on empowerment of affected people throughout the program. It is a key element for the increased work in lobby and advocacy that is expected in the coming years.
188 people received leadership training, which is essential for the sustainability of SCGs in Brazil. Given that these groups are more focused on the government health system than in other countries with NLR-support – i.e. meetings are nearly always held in public health centers and led by public health professionals – the groups need to have clear leadership from members in order to survive political changes.
Number of new cases detected 26,395*
Proportion of new cases with grade-2 disabilities 7,5%*
Number of new cases detected in the area where we work 1,417
Number of people receiving leprosy-training 1,131
Number of people informed/educated (awareness raising) about leprosy 16,469
Number of self-care groups supported/formed:
a) Number of existing groups (formed before 2016) supported in 2016 26
b) Number of new groups formed and supported in 2016 32
*Numbers 2015. Numbers 2016 not yet available
Number of people disabled by leprosy and other diseases trained in self-care 833
Number of Disabled Peoples Organizations (DPOs) receiving assistance from NLR 1
Number of people provided with reconstructive surgery 197
Number of people provided with assistive devices (wheelchairs + crutches + sunglasses + protective/ orthopaedic footwear + prostheses) 5,523
Number of people provided with microcredit 10
Number of people receiving vocational training 406
Number of persons with disabilities acquainted with their rights 1,314
Number of people who received leadership training 188
The University of Pernambuco self-care group project increased the number of groups from 3 to 8 in the Recife Metropolitan Region. In addition to daily care practices, members learned about social rights. Group interaction increased self-esteem, which helped some to overcome depression.
The Federal University of Ceará continued development of the NTD morbidity and disability assessment toolkit for patients with leprosy and Chagas disease. Work is ongoing to validate stigma and empowerment scales for this toolkit and a scale to measure self-care groups.
Lobbying and advocacy activities with the Public Defender’s Office through the MORHAN branch in Recife helped guarantee the proper use of federal funds allocated for leprosy interventions, like free public transport. This is essential to ensure social movements towards leprosy disease control.
Self-help groups in Paraíba have supported members in becoming small business owners. Thanks to the project’s business plan support and consultancy, former patients who had no source of income are currently succeeding, with 7 of them achieving autonomy.
Mr. Cícero Alves is a man of 52, married with 2 daughters and 3 grandchildren, from Cajazeiras, Paraíba state. ‘I was diagnosed with leprosy in 2009. After a year of taking antibiotics I had corrective surgery for the disabilities I had developed. One of my feet is still numb.
Some of my friends no longer wanted to have anything to do with me when they found out I had leprosy. Many people with leprosy are ashamed, but I don’t hide it. Some years ago I joined a group of former leprosy patients. During our meetings we learn a lot about the disease, but about other stuff too. I used to work on the land, but I could no longer do that, so I was unemployed for a while. Then one of my cousins lent me some money and I started baking sweet coconut cookies. My mother-in-law knew a good recipe. Our neighbors were very excited about them, so ever since I have been baking 260 -300 cookies a day and I always sell them all.
At a NLR Brazil course I learned about generating income and profit calculation. We also received assistance in drawing up a business plan and making an analysis of its strengths and weaknesses. As a result I’m now designing my own coconut cookie label. When I started out I had to make do with a tiny stove. Now I’ve got an industrial one, allowing me to produce on a larger scale. I have reorganized my kitchen and was able to buy a motorbike so that I can deliver my products to my clients more easily. If my company keeps growing, I’m going to hire personnel.’
All I have today, I owe to the production of coconut cookies and the support from NHR Brazil
From a program perspective, the mid-term evaluation in March 2015 aided the national team in reducing the scope of its projects and geographical areas in 2016. This resulted in fewer projects with a more manageable amount of field monitoring and evaluation to be done each quarter.
However, the 1-year proposals are also showing signs of considerable fragility. When project leaders do not submit a proposal for the next year, or when the quality of the follow-up proposal is weak, key gains are lost. NHR Brazil will think of ideas to promote multi-annual plans that have longer-term results under NLR’s budgetary requirements for annual (1-year) totals.
The past year revealed the need for more investment in the institutional capacity of project holders. Obviously, the various project leaders’ capacities differ, but there is a general need for: a) better project planning and indicator development; b) adequate risk evaluation and steps/strategies to mitigate these risks; c) engagement of other partners in truly joint, collaborative efforts; d) improved report and proposal writing; and e) awareness of funding opportunities, especially among civil society partners.
The NLR program in Brazil has the technical structure in place to undertake initiatives in all four Key Priority Programs (KPPs) in 2017. In addition, attention will be given to facilitating and strengthening of self-help organizations/Disabled People’s Organizations. This area, along with Lobby and Advocacy, is considered an essential cross-cutting initiative that will strengthen the KPPs in the future. These will be 2 of the priority lines of work for the ONDAS-team in their efforts to carry out direct interventions and raise local funding in coming years.
A total local program budget of approximately R$ 1,038,000 has been allocated by the NLR international office for 2017. Of the 9 external projects from the three priority states that responded to the third NHR Brazil call for proposals, all approved budgets are linked to the above-mentioned priorities. Based on the lessons learned in 2016, additional attention will be given to further increase the project leaders’ capacities.
Plans are in place for the local organization – ONDAS – to be up and running in the first semester as part of the NLR 2020 process and an operational merger with the German Leprosy Relief Association. This work will be based on the new national policy for NLR/ONDAS for 2017-2021, as well as a new fundraising plan to achieve greater sustainability of NLR’s mission over the same period.