People with leprosy: knocking on the door of Community Based Rehabilitation and politicians
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Transcript of People with leprosy: knocking on the door of Community Based Rehabilitation and politicians
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People with leprosy: knocking on the door of Community Based Rehabilitation and politicians
Experiences in Northern Nigeria
Mike IdahNetherlands Leprosy Relief
4th Int’l AfriCAN CBR Conference, Abjuja.
28th October 2010 1
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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?
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1. Background Information Leprosy
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Trend in new cases with grade 2 disability
0.00
0.20
0.40
0.60
0.80
1.00
1.20
1987
1988
1989
1990
1991
1992
1993
1994
1995
1996
1997
1998
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2002
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Reporting years
Dis
abili
ty G
rad
e 2
rate
/ 10
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0
0.01.02.03.04.05.06.07.08.09.010.0
% a
mo
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new
cas
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Grade 2 disability rate Proportion of G2 among new cases
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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.
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2. Disability in northern Nigeria
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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
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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
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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
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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
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Specific challenge re leprosy
• Stigma towards People affected by Leprosy
• Ignorance and wrong attitudes among professional staff
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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
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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
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3. Baseline Survey (cont.)
Field work
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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
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3. Baseline Survey (cont.)
Types of disability in Kaduna state, Nigeria, 2009
Visual18%
Auditory9%
Speech2%
Moving around30%
Learning0%
Movement14%
Behavioral8%
Seizures1%
Others18%
Types of disability in Kaduna state, Nigeria, 2009
Visual18%
Auditory9%
Speech2%
Moving around30%
Learning0%
Movement14%
Behavioral8%
Seizures1%
Others18%
Type of disability
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3. Baseline Survey (cont.)
Causes of disability, Kaduna state, Nigeria, 2009
Congenital16%
Disease19%
RTA5%
Work injury5%
Domestic injury3%
Curse3%
Witchcraft8%
Others41%
Causes of disability, Kaduna state, Nigeria, 2009
Congenital16%
Disease19%
RTA5%
Work injury5%
Domestic injury3%
Curse3%
Witchcraft8%
Others41%
Causes of Disability
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3. Baseline Survey (cont.)
Conclusions• Disability is equally
prevalent in rural and urban areas
• Paid employment is important but not readily available
Thus• Focus on densely populated
areas
• Emphasis on SER; IGPs and providing capital and job placement
• New endeavours? Cooperatives + SHGs?
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4. Programme Development
Conclusions• More elderly disabled
people in urban areas
• Childhood disability more prevalent in rural areas
Thus• Develop support systems?
• Lobby/advocacy for:– Development of medical
rehabilitation services
• Train professionals + parents • Strengthen PHC (including focus
on early identification)
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4. Programme Development (cont.)
Conclusions• Moral explanations of
disability still exist
• Need for all sorts of assistive devices
Thus• Step up education and
sensitisation programs e.g. puppetry
• Ensure more accessible services
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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
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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
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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
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Training in puppetry
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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
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First performance at palace of Emir
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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
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GOAL: HUMAN RIGHTS ~ SOCIO-ECONOMIC DEVELOPEMNT ~ POVERTY REDUCTION
COMMUNITY BASED REHABILITATION (CBR)
HEALTH
PROMOTION
PREVENTION
PRIMARY & SECONDARY
CARE
TERTIARY CARE/REHABILITATION
EDUCATION
EARLY CHILDHOOD
DEVELOPMENT
NON-FORMAL
FORMAL INCLUDING PRIMARY
SECONDARY AND HIGHER
LIVELIHOOD
SKILLSDEVELOPMENT
INCOME GENERATION
FINANCIAL SERVICES
EMPLOYMENT
EMPOWERMENT
SELF-HELP GROUPS
DISABLED PEOPLE'S
ORGANIZATIONS
SOCIALMOBILISATION
POLITICAL LOBBYING
SOCIAL
LEGALPROTECTION
CULTURERELIGION &
ARTS
SPORTS RECREATION &
LEISURE
RELATIONSHIPMARRIAGE &
FAMILY
ASSISTIVEDEVICES
LIFE-LONG LEARNING
SOCIAL PROTECTION
LANGUAGE & COMMUNICATION
PERSONAL ASSISTANCE
PRINCIPLES: PARTICIPATION ~ INCLUSION ~ SUSTAINIBILITY ~ SELF ADVOCACY
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CBR Challenges
In order to further develop CBR? We need:
Political Will!
Training of field staff
Funds
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•Nagode•Obo-hoho •Thank you