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
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
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?
1. Background Information Leprosy
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
1999
2000
2001
2002
2003
2004
2005
2006
2007
2008
Reporting years
Dis
abili
ty G
rad
e 2
rate
/ 10
0,00
0
0.01.02.03.04.05.06.07.08.09.010.0
% a
mo
ng
new
cas
es
Grade 2 disability rate Proportion of G2 among new cases
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.
2. Disability in northern Nigeria
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
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
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
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
Specific challenge re leprosy
• Stigma towards People affected by Leprosy
• Ignorance and wrong attitudes among professional staff
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
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
3. Baseline Survey (cont.)
Field work
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
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
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
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?
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)
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
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
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
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
Training in puppetry
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
First performance at palace of Emir
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
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
CBR Challenges
In order to further develop CBR? We need:
Political Will!
Training of field staff
Funds
•Nagode•Obo-hoho •Thank you