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