People with leprosy: knocking on the door of Community Based Rehabilitation and politicians

1. People with leprosy: knocking on the door of Community Based Rehabilitation and politicians Experiences in Northern Nigeria Mike Idah Netherlands Leprosy Relief 4th Int’l AfriCAN CBR Conference, Abjuja. 28th October 2010

2. Structure of presentation • Leprosy: about a neglected disease and ignored disabilities • Disability in northern Nigeria • Baseline Survey: what we found and what we missed • Programme Development: building partnerships • Community Based Rehabilitation: the answer?

3. 1. Background Information Leprosy

4. Trend in new cases with grade 2 disability

5. Current situation regarding leprosy in Nigeria • New cases are slowly declining • Still large number of people with leprosy-related disabilities • Large proportion have activity limitations and/or participation restrictions • Large unmet needs regarding Prevention Of Disabilities (POD) and rehabilitation • Important tasks lie ahead in • Sustaining leprosy expertise • Maintaining quality leprosy services • Reducing stigma and discrimination • Improving quality of life of people with leprosy-related disabilities.

6. 2. Disability in northern Nigeria

7. Nigeria • Lack of data re magnitude and scope of disability • Legislation (National disability policy 1993; Standard Rules 1993; Signing of UNCRPD december 2006); Ratification September 2010 • Government rehabilitation services: • Min of Health: medical and therapeutic rehabilitation • Min of Education: special schools • Min of Women Affairs and Social Development: coordinating body for socio-economic rehabilitation • State level: Rehabilitation Boards

8. Rehabilitation Boards • Implementing bodies (under Min of Women Affairs and Social Development); they try hard, but • Poor output in terms of no. of beneficiaries • Vocational trainings only • Much centre-based • High overhead (i.e. staff) • Limited spending at community level • Lack of knowledge and expertise in CBR Yet… it seems to be the only possible source – besides NGOs – that are available to implement CBR

9. In NLR supported states • Vocational training (CBVR) + IGPs in some states • Some special schools • Physiotherapy departments in some hospitals • Three orthopaedic workshops • Yadakunya (Kano state) • NKST Mkar (Benue state) • Garakida (Adamawa state) • Most staff at workshops got training 15 years ago • Quality of products is poor • Output is low

10. Civil Society Organisations active • CBM • SightSavers • Dark & Light • Stichting Liliane Fonds (SLF) • Mangu School for Physically Disabled • CYDI Bauchi • COCIN Hospital Mangu: • vocational training • CBR supported by CBM • Gindri Material Centre for the Handicapped • DPOs • Joint National Association of Persons with Disabilities • IDEA

11. Specific challenge re leprosy Stigma towards People affected by Leprosy Ignorance and wrong attitudes among professional staff

12. Other Challenges • Charity culture among people with leprosy • Many elderly persons affected by leprosy • Finding a balance between care and rehabilitation • Overall: Very few rehabilitation services

13. 3. Baseline Survey • General disability survey: focus on all PWDs in Kaduna State • Survey tools • Selection of tools from the Rapid Disability Assesment (RDA) toolkit of NLR • screening tool • Household interview • Individual disability interview • Childhood disability screening tool

14. 3. Baseline Survey (cont.) Field work

15. 3. Baseline Survey Results • Prevalence 3.9% • 4.7% for Males • 3.0% for Females • Majority in economic active age group, followed by the elderly

16. 3. Baseline Survey (cont.) Type of disability

17. 3. Baseline Survey (cont.) Causes of Disability

18. 3. Baseline Survey (cont.) Conclusions Thus Focus on densely populated areas Emphasis on SER; IGPs and providing capital and job placement New endeavours? Cooperatives + SHGs? • Disability is equally prevalent in rural and urban areas • Paid employment is important but not readily available

19. 4. Programme Development Conclusions Thus Develop support systems? Lobby/advocacy for: Development of medical rehabilitation services Train professionals + parents Strengthen PHC (including focus on early identification) • More elderly disabled people in urban areas • Childhood disability more prevalent in rural areas

20. 4. Programme Development (cont.) Conclusions Thus Step up education and sensitisation programs e.g. puppetry Ensure more accessible services • Moral explanations of disability still exist • Need for all sorts of assistive devices

21. 4. Programme Development (cont.) Vision NLR Nigeria: empower persons and communities affected by leprosy in order to improve their quality of life NLR does not provide services, but support programme development e.g. training + coaching, organisational development, institutional development, research, setting up structures and systems

22. 4. Programme Development (cont.) • Starting points: • Influence attitudes • Support the development of comprehensive and integrated rehabilitation programmes for all persons with disabilities (including those affected by leprosy) in collaboration with a Rehabilitation Board (in Kaduna State) and an NGO (CYDI in Bauchi State). • Approach: mainstream where possible; special interventions where needed

23. 4. Programme Development (cont.) • Strategies • Baseline / needs assessment (= done) • Raise awareness about leprosy and promote acceptance • Develop networks • Facilitate Socio Economic Rehabilitation • OD + Capacity building of State Rehabilitation Board in Kaduna + CYDI in Bauchi • Development of formal CBR training at Jos University

24. Training in puppetry

25. Community education and sensitisation • Puppetry • 15 shows • Average 300 children and 200 adults per show • Positive responses • Scaling up • TV shows • Diversification scripts • Diversification public

26. First performance at palace of Emir

27. 5. Community Based Rehabilitation • NLR partners: CYDI in Bauchi State + IDEA • Training in CBR for staff CYDI • Puppetry training IDEA by KIPT (Kenya) • Development of CBR at LGA level • Close collaboration with community leaders • Start is made with: • Vocational training • Socio-economic rehabilitation

28. GOAL: HUMAN RIGHTS ~ SOCIO-ECONOMIC DEVELOPEMNT ~ POVERTY REDUCTION PRINCIPLES: PARTICIPATION ~ INCLUSION ~ SUSTAINIBILITY ~ SELF ADVOCACY

29. CBR Challenges In order to further develop CBR? We need: Political Will! Training of field staff Funds

30. Nagode • Obo-hoho • Thank you