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5. That in project areas, surveys be made of the socio-economic needs of people affected by Hansen's disease and of individual, Iocal and national resources for solving these in an integrated manner. The aim of such surveys is efficient and effective action to resolve them.

6. That people affected by leprosy be empowered to develop solutions to their problems in partnership with other community members.

 

The committee also warned against the following dangers:

1. Failure to consider socio-economic implications of medical decisions (For example long internation for treatment, surgery, rehabilitation, or research causing institutionalization).

2. Goal confusion. Who is the primary beneficiary of a proposed program? The institution or individuals affected by Hansen's disease? At times people affected by the disease are kept in an institution because they are more needed to guarantee the success of an institution's program than because of their own needs.

3. Isolating people affected by Hansen's disease by establishing socio-economic programs in former leprosy institutions rather than in the community.

4. Excessive paternalism: Sometimes for the aged and severely disabled, paternalism is needed. For others it can be deadly to the spirit and should be avoided. In some countries people affected by leprosy have more special privileges (pensions, housing, transportation, etc.) than people with similar problems. This can create resentment and segregation.

5. Exploitation: Lack of fair payments for work performed by people affected by the disease. Also excessive exploitation of the leprosy image to bring in donations. This harms normalisation.

6. Inadequate solutions for individuals. People are different. Some do better employed, some in setting up their own small business, some in cooperatives, others in sheltered workshops and others because of age and disability should be taken care of.

7. Not actively involving persons affected by leprosy and their families in the process of solving their medical and socio-economic problems.

8. Not considering other needs besides employment: What about transportation, day care, housing, aids for the disabled, all of which make employment possible ?

9. Sustainability: Creating non-viable programs. How will the individual or the program continue after the initial grant has dried up? There has to be a regular flow of cash return. That requires products that people want to buy with fair pricing and fair profit margins. It means carefully calculating of costs and returns before setting up a program.

10. Evaluation. Programs needs to be carefully and honestly evaluated in relation to clear established objectives.

 

Mr. Thomas Frist

Chair person

Prof. R. Mutatkar

Rapporteur

 

T. Frist, N.C., U.S.A.

 

 

 

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