SOCIO ECONOMIC REHABILITATION IN LEPROSY

Dr. Debadutta MishraRehabilion Consultant

CSR, JSPL, Raigarh.

Understanding the problem

• Leprosy rehab still a Medical Model• Ignored Social and economic implications • The vicious cycle of Disability and Poverty• Associated Stigma and Fear• Segregation & Non-inclusion ‘asylum/Colony’• Size of the problem of leprosy related disabilities and

the resultant displacements are not known precisely.

Contd…..

• Leprosy cured persons are not aware of several rehabilitation schemes and centers for deformity care.

• Staff of employment exchanges may not be fully aware of the need/provisions to register leprosy cured persons in the disability category.

• Criteria of 40% or above disability (permanent/ partial disability of both upper and lower limbs) which orthopaedically handicapped persons followed may not suit the leprosy disabled persons.

• Inadequate awareness of leprosy staff and general health care staff about location of centers for registration for employment of PAL.

Leprosy & Disability

Disabilities such as loss of sensation and deformities of hands/feet/eyes occur because:

Late diagnosis and late treatment with MDT

Advanced disease (MB leprosy)

Leprosy reactions which involve nerves

Lack of information on how to protect insensitive parts

Prevention of Disabilities

The best way to prevent disabilities is:

Early diagnosis and prompt treatment with MDT

Inform patients (specially MB) about common signs/symptoms of reactions

Ask them to come to the centre

Start treatment for reaction

Inform them how to protect insensitive hands/ feet /eyes

Involve family members in helping patients

Concepts and prospects

• The basic concepts behind rehabilitation are that the persons affected with leprosy should be restored back to normal social life or as near as possible.

• Rehabilitation means restoration of economic productivity leading to economic independence.

• Rehabilitation in the field of leprosy requires greater efforts than the rehabilitation in other types of disabled persons because of the question of social acceptance.

Contd…

• The task of removing public fear and at the same time maintaining public concern and interest may be difficult but not impossible.

• Efforts to create a broad interest in the social problems of leprosy afflicted are beginning to yield good results.

• Patients who are successfully rehabilitated and are leading normal family life should be taken as role models and this will give authenticity to the rehabilitation program and will have the right effect too.

InclusionInclusion

Community Based Rehabilitation

ParticipationParticipation

Self-advocacySelf-advocacy

Self-sufficiencySelf-sufficiency

EquityEquityEmpowermentEmpowerment

Social justice

Backbone Principles of CBR

50%75%75%90%90%

Challenges to Rehabilitation

• Mind set of service delivery mode• Difficulty in shifting from institution based mind set to

community work • Resistance to role change towards facilitator • Rigidity of hierarchy and bureaucracy that is not

conducive to a ‘bottom-up’, participatory culture• Lack of skills and knowledge in community work

Contd…

• Mind set of ‘beneficiaries’• Lack of support from policy makers, donors• Interdepartmental Coordination• Resource implications for expanded community

based activities• Capacity building of field workers and managers for

CBR

Rehabilitation need to be comprehensive

Priority areas for action - 1

• Inventory of existing services– Use what already exists in the community!

• Focus on disability and related needs• Integration of PLD in general (rehabilitation)

services– Disability surgery– Physiotherapy and occupational therapy– Socio-economic development programmes (e.g. micro-

credit)– Education (including vocational and non-formal)– Disabled Peoples’ Organisations.

Priority areas for action – 2

• Promote reverse integration– Self-care and self-help groups– POD services– Rehabilitation services (esp. SER)– Disintegrating Leprosy villages / colonies

• Implement human rights perspective– Self-organisation– Empowerment, capacity building– Attention for structural discrimination and

dis-empowerment, also in own organisation.

Priority areas for action – 3• Increased attention for environmental and personal factors

– Empowerment (literacy, self-esteem)– Poverty reduction (skills for income generation)– Stigma and discrimination

• Discriminatory legislation• Stigma among (health) service providers• Self-stigma

• Research– Baseline data– Disability and poverty (and other determinants)– Effectiveness of interventions (e.g. CBR, stigma, rights-

based interventions)– Indicators for monitoring and evaluation.

Social integrated approach

• Expanding social welfare for PAL into general communities

• Promoting community participation in CBR• Empowering PAL, families and communities• Focus on human rights and equal access

Social welfare and services

• Land and house• Social security allowance • Education• Occupational promotion• Rehabilitation services

CBR: A Convergent Approach

The person with disability and immediate family

Neighbours, extended family, and friends living close to the person with a disability

Village/Community leaders, teachers, health and community workers, potential employers, etc

Local government units, NGOs, disability groups, specialists, schools, hospitals, livelihood opportunities

Provincial and national government agencies, political leaders, media

Persons with leprosy

THANK

YOU..