17. SOCIO ECONOMIC REHABILITATION IN LEPROSY- CURRENT STATUS AND FUTURE NEED

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1 Health Administrator Vol : XVIII Number 2 : pg. 17. SOCIO ECONOMIC REHABILITATION IN LEPROSY- CURRENT STATUS AND FUTURE NEED Mr T Jayaraj Devadas Introduction Rehabilitation of the leprosy affected is posing a formidable challenge to the social workers in our country. Despite the significant advances in the medical side traditional prejudices have continued to retain their grip on common perceptions. Currently available field interventions to control and care deformed have opened fresh dimensions on how both the disease and those affected by it should be treated and cared for. Rehabilitation of the leprosy patients is a multi faceted and a long drawn process. Consistent efforts in various directions are necessary to bring success. It is a time consuming process and the rewards are not quite often commensurate with the inputs. The peculiar social connotations of the disease need to be paid adequate attention while discussing the rehabilitation of a leprosy affected person.the social stigma and the consequent resentment and ostracism often make the life of leprosy sufferers unbearable. On account of our limited funds, adequately trained and dedicated personnel, health priorities etc. we are forced to place the problem of rehabilitation on low key on the list of priorities in leprosy work. It needs special mention here that great emphasis should be laid on what may be called Preventive Rehabilitation. Accordingly all possible measures should be taken to prevent the need of any special rehabilitation service. Early diagnosis and early treatment with due importance to the prevention of deformity can be the most effective preventive rehabilitation. Rehabilitation of a leprosy affected person begins when the disease is first diagnosed. Therefore the doctors and the health workers should be trained to look out for early signs and to advise patients how to prevent more severe damages and correct the damages already present. Understanding the problem There is an increasing awareness on the social and economic implications of the leprosy diagnosis and a concern to address the broader impact of the disease. 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. People are accepting patients in their community who can live in their own homes in the natural environment. Patients who are successfully rehabilitated and are leading normal family life should be taken as examples and this will give authenticity to the rehabilitation programme and will have the right effect too. 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. In India economic independence out weigh many other considerations. Rehabilitation in the field of leprosy requires greater efforts than the rehabilitation in other types of disabled persons because the question of social acceptance does not arise in non leprosy disabled persons. In the case of a orthopeadically handicapped or a blind or deaf person their stay with the family is not prejudiced as in the case of leprosy patients. This is due to the stigma attached * Director, German Leprosy and TB Relief Association, Leprosy Relief Work Emmaus Switzerland, Gajapathi Naidu street, Chennai,Tamil Nadu,India 86

2 to the disease. Therefore one of the essential requirements in socio economic rehabilitation is to create a suitable condition in the community for social acceptance of leprosy cured persons through effective advocacy methods. While we plan the rehabilitation, we have to give specific attention to the social and economic aspects. It is now increasingly realized that the economic reinstatement of a leprosy patient will hasten the process of his social rehabilitation and acceptance in the community. In our country there is tremendous scope for self employment. Hence fullest advantage should be taken of the several opportunities presently available. Various job projects for self employment can be worked out taking in to account the local needs and the aptitude and interest of the person. A few Non Governmental agencies are rendering organised socio economic rehabilitation services to the affected persons by assessing their needs and at the same time helping them to bring lasting benefit. Members of the International Federation of Anti Leprosy Associations (ILEP) are showing keen interest in the socio economic rehabilitation and those orgaznisations which are active in this field are: German Leprosy and TB Relief Association (GLRA) Leprosy Relief Work Emmaus Switzerland (ALES) The Leprosy Mission International(TLMI) Amici Di Raoul Follereau (AIFO) LEPRA GLRA took the initiative to seed rehabilitation concepts in India. ILEP brought out guidelines for Social and Economic rehabilitation of people affected by leprosy to provide information and tools to individuals and organizations to ensure that the rehabilitation activities are carried out appropriately and the real benefits are reaching to the needy. According to ILEP guidelines, the approach to Socio- economic rehabilitation can be based on the following:? Responsiveness to the concerns of individuals affected by leprosy. This requires an approach that restores dignity and self respect; in other words participation and empowerment.? Sensitivity to the concerns of the families and communities affected by leprosy. Members of the family and the community have an important role to play in rehabilitation. Magnitude of the problem It is unfortunate that the size of the problem of leprosy related disabilities and the resultant displacements are not known precisely. Even organizations involved in the disability management are unable to provide figures relating to those needing rehabilitation services. The information is mostly restricted to the Grade 2 disabilities among new cases which is rather insufficient to make an overall picture or to understand the magnitude of the problem. While WHO estimates 2-3 million persons affected with leprosy related disabilities in the world, India NLEP estimates million persons affected with visible deformities. There is a lack of systematic data collection on disabilities among leprosy affected persons. Despite the fact that most health workers are identifying disabilities among new cases, this information is rarely collected and reported. Current status of rehabilitation As far as the Govt. programme is concerned, the Ministry of Social Justice and empowerment is the responsible body for extending rehabilitation services to leprosy affected persons in India. The Ministry should act as pacesetter by introducing innovative scheme by involving the NGOs. For the eligibility for the schemes for the employment/ self employment of leprosy affected /cured persons the definition which is in operation is Leprosy Handicapped persons are those who are cured/ non infectious and have physical and socio economic handicap.? Recognition of the broad impact of leprosy on the individual; in other words its physical, psychological, social and economic effects. 87 The rehabilitation service benefits reaching leprosy handicapped is dismal in comparison to

3 rehabilitation benefits provided to other categories under various schemes/ provisions of the Ministry and this may be due to the following reasons: 1. Leprosy cured persons are not aware of several rehabilitation schemes and centers for deformity care. 2. Staff of employment exchanges may not be fully aware of the need/provisions to register leprosy cured persons in the handicapped category 3. Criteria of 40% or above disability (permanent/ partial disability of both upper and lower levels) which orthopaedically handicapped persons followed may not suit the leprosy handicapped persons. 4. Inadequate awareness of leprosy staff and general health care staff about location of centers for registration for employment of handicapped. It needs special mention here that the Govt. of India has created certain institutions and infrastructure exclusively for the rehabilitation of different handicapped persons including leprosy affected disabled persons. Some of them are listed below: * National Council of Handicapped welfare, New Delhi * Rehabilitation Council of India, New Delhi * National Institute of Visually Handicapped, Dehradun, UP with a branch in Chennai * National Institute of Mentally Handicapped, Hyderabad * Regional Training Centre. National Institute of Mentally Handicapped, New Delhi * National Institute of Orthopeadically Handicapped, Kolkotta * Institute of physically Handicapped, New Delhi 88 * National Institute of Rehabilitation, Training & Research Centre, Cuttack * Artificial Limb Manufacturing Corporation (ALIMCO) of India at Kanpur with branches at Delhi, Bubaneswar and kolkotta and Resident Executive Offices at Chennai, Bangalore and Mumbai Apart from this there are District Rehabilitation Centres established under the Ministry of Welfare in different states. Also special cells are functioning in the normal employment exchanges to help the placement of the physically handicapped persons. These cells are funded by the Govt.of India but functioning under the administrative control of the State Governments. Establishement of the Vocational Rehabilitation Centres (VRCs) by the Govt. of India is a major step towards the training and placement of the physically challenged persons in our country and these centers are situated in 17 states and extending its services to the whole country. NGO initiatives Non Governmental organizations(ngo) have introduced different schemes to help the leprosy affected persons suiting to their experience, qualifications and aptitude. To deal effectively with the patients, some NGOs have catogorised the patients with reference to their deformities and socio economic conditions. According to Dr.P.K.Gopal, President IDEA the following catogorisation has been accepted and put in to practice in many projects: I. Patients who do not have any kind of deformity and have no social and economic problem II. III. IV. Patients who have deformities but do not have social and economic problem Patients who do not have deformities but suffer from social and /or economic problem, due to the disease Patients with deformities whose social and economic positions are being threatened and likely to be dislocated

4 V. Patients who have deformities whose social and economic positions have been disrupted already VI. Patients who have reached the state of destitution because of severe deformities and the end result of the long sufferings due to disruptions in their socio economic conditions. The different schemes which some of the NGOs have offered are listed below: * Loan scheme for self employment * Placement services * Educational support * Housing scheme * Old age support. etc Future needs: During the last 15 years the number of young leprosy affected persons with deformities has been steadily decreasing every year. In view of this steady decline, the scope of exclusive rehabilitation programme for the leprosy affected displaced persons is becoming less and may not be a feasible proposition. Hence the future planning of rehabilitation programme should be on an integrated approach. Such programmes should cater to the needs of not only persons disabled due to leprosy but also for persons handicapped due to other reasons. A study by AIFO in Mandya District of Karnataka showed that leprosy affected persons can be involved effectively in community rehabilitation programme (CBR) and can bring significant progress towards their rehabilitation. However it requires careful planning and need based training. Such programmes are justified by the fact that persons with leprosy related disabilities are part of the wider community of disabled persons and integration would be effective against segregation, isolation and social stigma. While there is feasibility in involving leprosy affected persons in CBR, lack of availability of CBR programmes makes it difficult to operationalise at the national level. GLRA has initiated socio- economic rehabilitation programme in seven districts in Gujarat and seven districts in Kerala through private-public mix approach. Involvement of the Government officials of the Districts were ensured through joint workshops and planning sessions. Initial results are quite encouraging. Constant monitoring, guidance and close co ordination are bringing the desired results. Such experiments and initiatives by NGOs can be limited to smaller geographical areas and can tackle only a small part of the total problem. Since leprosy services are getting integrated in to general health system, it is necessary to come out with an integrated strategy for the socio economic rehabilitation of leprosy affected displaced persons for the whole country. It is necessary to make an attempt to get clear information on the extent of the problem at the district level so that it is possible to come out with appropriate intervention plans keeping the district as a unit. We should always bear in mind that normalization of the life of the individual should be the final objective of all the interventions that we are planning. Changing support systems, from vertical to horizontal, segregated to integrated may not solve all the problems of the leprosy affected and displaced persons. Nevertheless, transforming these systems will greatly help them to lead normal, useful lives with dignity within their communities. REFERENCES: 1. World Health Organisation. International classification of impairment, Disabilities and Handicaps, Geneva, Tom Frist, Don t treat me like I have leprosy A guide to overcoming prejudice and segregation, Sunil Deepak, Answering the rehabilitation needs of leprosy affected persons in integrated setting through primary health care services and community based rehabilitation 89

5 4. ILEP, Guidelines for the Social and economic rehabilitation of people affected by leprosy, GLRA- India, Dimensions of Leprosy Eradication, Jesudasan K & Sunder Rao PSS, Care after Cure, Ministry of Social Justice and Empowerment, Grant in Aid Schemes 6. N.G.Dharamshaktu, A Guide on Leprosy,