Identification and Validation of Leprosy Colonies in India: A Study Report Identification and Validation of Leprosy Colonies in India (A Study Report) March 2020 Sasakawa-India Leprosy Foundation IETE Building, II Floor 2, Lodhi Road, Institutional Area, New Delhi, 110003 www.silf.in End Discrimination, Spread Smile........... Page 1 Identification and Validation of Leprosy Colonies in India: A Study Report Table of Contents Sl. Description Pg. No. No. 1 Introduction 4 2 Objectives of the Study 5 3 Limitation of the Study 5 4 Methodology and Approach of the Study 5 4.1 Reaching Out the Major Stakeholders for Cooperation and Available Data 5 4.2 Source of Data 6 4.3 Scope of the Study 6 4.4 Study Method and Tool 6 4.5 Study Variables 6 4.6 Data Collection 7 5 Study Findings 8 5.1 Number of Colonies in the Country 8 5.2 Number of Families and Population Size of the Colonies 21 6 Major Learning and Challenges of the Study 25 7 List of Tables 1. Number of Colonies in the Country 8 2. Rehabilitation Centre and Hospital cum Rehabilitation Centre 11 3. Number of Districts with Colonies as Against Total Number of 18 Districts in the State/UT 4. District with Highest Number of Colonies and Their Demographic 19 Profile 5. Demographic Information of the Colonies 22 End Discrimination, Spread Smile........... Page 2 Identification and Validation of Leprosy Colonies in India: A Study Report 6. Information of the Affected Persons in the Colonies 24 8 List of Annexure 1. Study Tool: Survey Questionnaire 30 2. List of States/UTs with no Leprosy Colonies 33 3. State Wise Profiles of Colonies after Verification 35 4. Contact Details of Stakeholders Approached at National Level 195 5. Contact Details of Stakeholders Approached at State Level 199 6. List of States/UTs whose SLOs/Director Health Services Shared State 201 Specific Leprosy Colony Data 9 Abbreviations and Acronyms 206 End Discrimination, Spread Smile........... Page 3 Identification and Validation of Leprosy Colonies in India: A Study Report Identification and Validation of Leprosy Colonies in India A Study Report 1. Introduction Leprosy is one of the least infectious of diseases known to the human kind. Yet it persists and every year more than 200,000 people world wide are affected by it. Moreover, it is now nearly forty years since a cure for it was discovered in the form of a regimen of three antibiotic drugs. These drugs have been available free of cost in all the countries where leprosy exists; they are part of the public health systems. Yet, the challenge to eliminate the disease remains. The multiple factors that contribute to this challenge are- lack of complete clarity on the mode of transmission, a long and varied incubation period, persisting ignorance and misinformation about its symptoms and side effects, and socio-cultural baggage associated with the disease. Although, the disease is now curable and disfigurement can be avoided with treatment, the myths surrounding leprosy abound, perpetrating fear of contagion and incurability. The fear of disease becomes graver than the disease itself. The patients and their family are therefore still shunned and discriminated against. Facing acute social stigma, leprosy affected persons are often forced to live in segregated and isolated ghettos in semi-urban and rural areas. This ostracization impacts almost every area of life of the affected, including inter-personal relationships, economic security, mental and social health and wellbeing. Leprosy colonies exist throughout India. The fact that even after so many years of successful medical breakthroughs in the treatment of disease if the need for segregated living of affected people still exists in our society then one can very well understand that the living conditions in these colonies would not be great. Majority of the colonies are marked by poor civic amenities, lack of livelihoods opportunities, lack of employment avenues, land acquisition related disputes, gender discrimination, poor health status and low literacy rate etc. In 2006-2007 a nationwide survey was conducted by the Integration, Dignity and Economic Advancement of People Affected by Leprosy India & Association of People Affecetd by Leprosy (APAL formerly National Forum India) to identify the leprosy colonies in India. The survey was first of its kind and brought to light the existence of 850 leprosy colonies, homes in India. However, the data that was collectd 13 years ago is no longer valid as the people and situation would have changed in the intervening period. Thus updated and accurate information about the number of colonies, the number of households, and their demographic profiles, along with the health, economic and educational parameters is not available. End Discrimination, Spread Smile........... Page 4 Identification and Validation of Leprosy Colonies in India: A Study Report In order to be able to addresss the needs of this marginalized community, accurate data is a must for the design and implementation of impactful interventions. This is especially so if concerted effort is to be made to end the need for segregated colonies and provide effective avenues for the integration of leprosy affected people and their families in mainstream society. Both government and civil society initiatives are limited on this account. There is thus a need to identify new colonies and verify and validate the existing ones so that a holistic planning and design for their development could be done. Against this backdrop Sasakawa India Leprosy Foundation (S-ILF) conducted the present study, i.e. “Identification and Validation of Leprosy Colonies in India”, throughout the country with the help of government as well non- government stakeholders along with APAL. S-ILF, since its inception in November 2006, is committed to transform lives of the persons affected by leprosy and their families through livelihoods, education and awareness & advocacy based programs in self settled leprosy colonies in India. 2. Objectives of the Study: The objectives of the study can be enumerated thus- Identification and validation of number of leprosy colonies in India. Compilation of pan India as well as state wise data of colonies with a brief profile. 3. Limitation of the Study: During the course of study, it has been found that the colony leaders did not have the updated and accurate demographic information of the colonies hence in many cases the data provided is an approximation. Further, while an attempt has been made to give the latest names and telephone numbers of the leaders of the colonies, this information is volatile as there are often frequent changes in colony leadership and people change their mobile numbers. Accuracy of the information regarding their contact details needs to factor this in. Besides, in some colonies the colony leaders or the NGOs managing them refused or showed their inability to share the data. In these cases only the information regarding the colony existence is made available in this report. 4. Methodology and Approach of the Study: 4.1 Reaching out the major stakeholders for cooperation and available data The focus of the study was to keep the process participatory and inclusive in every possible way and at every possible step. Different stakeholders such as Ministry of Health and Family Welfare (MoH&FW), APAL, State health departments, people’s organizations and NGOs were networked with. They were reached out to share the objective and background of the study in question. They were requested to share the available information so that the process End Discrimination, Spread Smile........... Page 5 Identification and Validation of Leprosy Colonies in India: A Study Report of verification and identification of colonies could be made possible. Starting from the national level we moved to state and grassroots level. At national level we approached and solicited support from MoH&FW, National Leprosy Eradication Programme (NLEP)/Central Leprosy Division Governement of India, WHO, The Leprosy Mission, Netherlands Leprosy Relief (NLR), LEPRA Society Health in Action, ALERT-India, APAL etc. The same exercise was carried out at State level with all the State Leprosy Officers (SLO)/ Director Health Services, APAL state bodies and groups like Bombay Leprosy Project, Damien Health and Welfare Society, Missionaries of Charity etc. In addition to that District Leprosy Officers (DLO) were also contacted and networked with. Primary health center, civil society organizations and NGOs/trusts served another important source of information. APAL national president was apprised about the study in question in detail and was requested to facilitate the study in the field. Thereafter, the details of the study were shared with the state leaders along with forum members through emails and telephonic interactions. Additionally, wherever the need arose, like in Maharashtra, Bihar, Jharkhand, Chhattisgarh, Odisha and Telangana, networking meetings were also held to share the objective and modus operandi of the study. The meetings were attended by APAL state and colony leaders along with other active members of the colonies. 4.2 Source of Data: Secondary data for the survey was collected from aforesaid stakeholders. Due efforts were made to ensure that all the colonies in their knowledge are listed. Thus three major sources of data were- government health system, non-government bodies/organizations (inclusive of APAL and its state chapters) and the colony leaders/residents themselves. 4.3 Scope of the Study: The geographical stretch of the study was all 37 States and Union Territories (UT) of the country. All the colonies in these states and UTs were to be reached out so that all of them are mapped, listed and detailed information about their location, demographic composition and contact details are available for further interventions. Therefore, the colonies served as the universe of the study and all of them were covered across the length and breadth of the country.