41585 Public Disclosure Authorized PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES Public Disclosure Authorized Human Development Unit South Asia Region The World Bank Public Disclosure Authorized May 2007 Document of the World Bank Public Disclosure Authorized Acknowledgements This report was prepared by Philip O’Keefe (Team Leader) based on background papers by a team composed of Venkatesh Sundararaman, Anupriya Chaddha, and N.K. Jangira (Education); Maitreyi B. Das, Madhumita Puri and Namita Jacob (Health); Sophie Mitra and Usha Sambamoorthi (Employment); Meenu Bhambani (Policies and Institutions); Alana Officer (NGOs); Robert Palacios (Social Insurance); Jeff Hammer (Framework), and Sarabjit Singh (Access). Much of the data analysis of both NSS and other surveys was carried out by Corinne Siaens, whose work in particular provided the basis for the socio-economic profile of people with disabilities. Initial data set-up was done by Mehtab Azam. The report has also benefited from a survey and qualitative work carried out in late 2005 in Uttar Pradesh and Tamil Nadu by AC Nielsen/ORG-MARG by a team led by Sumit Kumar. The team benefited from the guidance of officials from the Ministry of Social Justice and Empowerment, including Ashish Khanna, Additional Secretary, former Joint Secretary, Smt. Jayati Chandra, the JS for disability issues, Mr. G.N. Pegu, and Mr. Ashish Kumar, Deputy DG, as well as Smt. Uma Thuli, former Chief Commissioner for Disabilities. There was also guidance provided by an inter-ministerial Technical Advisory Group set up for the work, chaired by MoSJE and consisting of representatives from the Ministries of Health, Labor, Human Resource Development, and Rural Development, as well as an NGO representative. In addition, Mr. Keshav Desiraju from the Ministry of Human Resource Development supported the team’s work. Officials in various states – in particular in Rajasthan, Karnataka, Orissa, Uttar Pradesh, and Tamil Nadu - were also helpful in meeting with team members and providing information. The team is also grateful for guidance and insights received from the following people: Javed Abidi and his staff (NCPEDP); Mithu and Sathi Alur, and their colleagues at the Spastic Society of India, Mumbai; Kevan Moll (VSO); Samir Ghosh (Independent disability consultant); Geeta Sharma (Unnati); Shruti Mohapatra (Swabhiman); Ashok and Asha Hans (SMMRI); participants in the Kolkata Inclusive Education consultation, and in the Mumbai workshop on Disability and Disaster Management, both in November 2005; Sanjeev Sachdeva and Anjlee Agarwal (Samarthya); Bhushan Punani (Blind Persons’ Association); Harsh Mander; and staff of Action- Aid New Delhi. The report was prepared under the overall guidance of Mansoora Rashid (Sector Manager for Social Protection, SASHD), Julian Schweitzer (Sector Director, SASHD) and Michael Carter (Country Manager for India). The team also benefited from useful inputs from peer reviewers, Daniel Mont (Disability and Development Unit, World Bank), Barbara Harriss-White (Oxford University), Lant Pritchett (SASSD), and Jonathan Gruber (MIT), and the comments of Fayez Omar (SASIN), Judith Heumann, Pia Rockhold and Jeanine Braithwaite (Disability and Development Unit), and Dipak Dasgupta (SASPR). Karthika Nair and Gertrude Cooper provided excellent team assistance throughout the work. ii Abbreviations and Acronyms ADL Activities of Daily Living ANM Auxiliary Nurse-midwives AP Andhra Pradesh CAPART Council for the Advancement of People’s Action in Rural Technology CBR Community Based Rehabilitation CDC Centers for Disease Control CPWD Commissioner for Persons with Disabilities CSN Children with Special Needs CWD Children with Disabilities DALYs Disability-adjusted Life Years DC Defined Contribution DIET District Institute for Education Training DISE District Information System for Education DMHP District Mental Health Programme DPEP District Primary Education Programme DPO Disabled Persons Organization DRC District Rehabilitation Center EPFO Employees’ Provident Fund Organization EPS Employees’ Pension Scheme FICCI Federation of Indian Chambers of Commerce and Industry GOI Government of India IADL Instrumental Activities of Daily Living IAY Indira Avaz Yogana ICDS Integrated Child Development Services ICIDH International Classification of Impairments, Disability and Handicaps IDD Iodine Deficiency Disorders IED Integrated Education of the Disabled IEDC Integrated Education of Disabled Children J&K Jammu and Kashmir LIC Life Insurance Corporation of India MDG Millennium Development Goal MDT Multi Drug Therapy MHRD Ministry of Human Resource Development MI Mental Illness MP Madhya Pradesh MR Mental Retardation MSJE Ministry of Social Justice and Empowerment MSS Mahila Swasthya Sanghas iii MTA Mother Teacher Association NCPEDP National Centre for Promotion of Employment for Disabled People NFCP National Filaria Control Program NFHS National Family Health Survey NGO Non Government Organization NHFDC National Handicapped Finance and Development Corporation NIACL New India Assurance Company Limited NLEP National Leprosy Eradication Programme NPS New Pension Scheme NREGS National Rural Employment Guarantee Scheme NSS National Sample Survey NSSO National Sample Survey Office NTD Neural Tube Defects OBC Other Backward Class PC Planning Commission PHC Primary Health Centers POA Plan of Action PPI Pulse Polio Immunization campaign PRI Panchayati Raj Institution PTA Parent Teacher Association PWD Persons with Disabilities RCH Reproductive and Child Health RCI Rehabilitation Council of India RRTC Regional Rehabilitation Training Centers SC Scheduled Caste SCA State Channelizing Agency SCERT State Council of Education Research and Training SGRY Sampoorna Grameen Rozgar Yojana SGSY Swaranjayanti Gram Swarozgar Yojana SHG Self Help Groups SSA Sarva Shiksha Abhiyan ST Scheduled Tribe TBA Traditional Birth Attendants TN Tamil Nadu UP Uttar Pradesh VEC Village Education Committee VRC Vocational Rehabilitation Centre W&CD Women and Child Development WHO World Health Organization WWD Women with Disabilities iv Table of Contents EXECUTIVE SUMMARY ....................................................................................................... x INTRODUCTION AND FRAMEWORK.................................................................................... 1 CHAPTER 1: SOCIO-ECONOMIC PROFILE OF PERSONS WITH DISABILITIES.................... 7 A. Socio-economic profile of PWD ........................................................................................ 7 B. Conclusions and recommendations .................................................................................. 18 CHAPTER 2: ATTITUDES TOWARDS DISABILITY AND PEOPLE WITH DISABILITIES....... 21 Conclusions and recommendations........................................................................................... 29 CHAPTER 3: HEALTH AND PEOPLE WITH DISABILITIES ................................................. 33 A. Causes of Disability in India ............................................................................................ 33 B. Prevention of Disability.................................................................................................... 38 C. Curative and rehabilitative health interventions and PWD .............................................. 42 C. Use of Health Services by PWD ...................................................................................... 45 D. Factors affecting PWD access to health care ................................................................... 50 E. Conclusions and Recommendations................................................................................. 54 CHAPTER 4: EDUCATION FOR PEOPLE WITH DISABILITIES............................................ 57 A. Indian and International Policy Developments on Education of CWD............................ 58 B. Educational profile of PWD ............................................................................................. 61 C. Public Interventions to Promote Education of Children with Special Needs................... 66 D. Non-government roles in education for CWD ................................................................. 80 E. Conclusions and recommendations .................................................................................. 82 CHAPTER 5: EMPLOYMENT OF PERSONS WITH DISABILITIES........................................ 84 A. Labor Market status of PWD............................................................................................ 84 B. Determinants of employment for PWD............................................................................ 91 C. Interventions to promote employment among PWD........................................................ 94 D. Conclusions and recommendations ................................................................................ 108 CHAPTER 6: SOCIAL PROTECTION FOR PEOPLE WITH DISABILITIES .......................... 109 A. Poverty Alleviation and Social Assistance Schemes for PWD ...................................... 109 B. Disability Insurance in India .......................................................................................... 115 C. Recommendations .......................................................................................................... 121 CHAPTER 7:POLICIES AND INSTITUTIONS FOR PERSONS WITH DISABILITIES IN INDIA123 A. Policies for disability in India .......................................................................................