50209 Vice President : Isabel Guerrero, SARVP Country Director : Roberto Zagha, SACIN Sector Director : Michal Rutkowski, SASHD Sector Manager : Mansoora Rashid, SASHD Task Team Leader : Philip O'Keefe, SASHD Disclaimer All rights reserved. The findings, interpretations, and conclusions expressed herein are those of the author(s) and do not necessarily reflect the views of the Board of Executive Directors of the World Bank or the governments they represent. Copying and / or transmitting portions or all of this work without prior permission may be violation of applicable law. The World Bank encourages dissemination of its work and will normally grant permission promptly. Any queries in this regard should be addressed to the Office of the Publisher, World Bank, 1818 H Street NW, Washington, DC 20433, USA, fax 202-522-2422, email: pubrights@worldbank.org Designed & Printed by: Pixel Design People with Disabilities in India: EXECUTIVE SUMMARY From Commitments to Outcomes Human Development Unit South Asia Region The World Bank July 2009 i PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES ADL Activities of Daily Living MDT Multi Drug Therapy ANM Auxiliary Nurse-midwives MHRD Ministry of Human Resource AP Andhra Pradesh Development CAPART Council for the Advancement of People's MI Mental Illness Action in Rural Technology MP Madhya Pradesh CBR Community Based Rehabilitation MR Mental Retardation CDC Centers for Disease Control MSJE Ministry of Social Justice and CPWD Commissioner for Persons with Empowerment Disabilities MSS Mahila Swasthya Sanghas CSN Children with Special Needs MTA Mother Teacher Association CWD Children with Disabilities NCPEDP National Centre for Promotion of DALYs Disability-adjusted Life Years Employment for Disabled People DC Defined Contribution NFCP National Filaria Control Program DIET District Institute for Education Training NFHS National Family Health Survey DISE District Information System for Education NGO Non Government Organization DMHP District Mental Health Programme NHFDC National Handicapped Finance and DPEP District Primary Education Programme Development Corporation DPO Disabled Persons Organization NIACL New India Assurance Company Limited DDRC District Disability Rehabilitation Center NLEP National Leprosy Eradication Programme EPFO Employees' Provident Fund Organization NPS New Pension Scheme EPS Employees' Pension Scheme NREGS National Rural Employment Guarantee FICCI Federation of Indian Chambers of Scheme Commerce and Industry NSS National Sample Survey GoI Government of India NSSO National Sample Survey Office IADL Instrumental Activities of Daily Living NTD Neural Tube Defects IAY Indira Avaz Yogana OBC Other Backward Class ICDS Integrated Child Development Services PC Planning Commission ICIDH International Classification of PHC Primary Health Centers Impairments, Disability and Handicaps POA Plan of Action IDD Iodine Deficiency Disorders PPI Pulse Polio Immunization campaign IED Integrated Education of the Disabled PRI Panchayati Raj Institution IEDC Integrated Education of Disabled PTA Parent Teacher Association Children J&K Jammu and Kashmir PWD Persons with Disabilities LIC Life Insurance Corporation of India RCH Reproductive and Child Health MDG Millennium Development Goal RCI Rehabilitation Council of India ii RRTC Regional Rehabilitation Training Centers ST Scheduled Tribe SC Scheduled Caste TBA Traditional Birth Attendants SCA State Channelizing Agency TN Tamil Nadu SCERT State Council of Education Research and UP Uttar Pradesh Training VEC Village Education Committee SGRY Sampoorna Grameen Rozgar Yojana VRC Vocational Rehabilitation Centre SGSY Swaranjayanti Gram Swarozgar Yojana W&CD Women and Child Development SHG Self Help Groups WHO World Health Organization SSA Sarva Shiksha Abhiyan WWD Women with Disabilities iii PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES Executive Summary xi Introduction and Framework 1 Chapter 1: Socio-Economic Profile of Persons with Disabilities 9 A. Socio-economic profile of PWD 9 B. Conclusions and recommendations 18 Chapter 2: Attitudes Towards Disability and People with Disabilities 23 Conclusions and recommendations 29 Chapter 3: Health and People with Disabilities 35 A. Causes of Disability in India 35 B. Prevention of Disability 39 C. Curative and rehabilitative health interventions and PWD 43 D. Use of Health Services by PWD 46 E. Factors affecting PWD access to health care 50 F. Conclusions and Recommendations 53 Chapter 4: Education for People with Disabilities 57 A. Indian and International Policy Developments on Education of CWD 57 B. Educational profile of PWD 60 C. Public Interventions to Promote Education of Children with Special Needs 64 D. Non-government roles in education for CWD 77 E. Conclusions and recommendations 79 Chapter 5: Employment of Persons with Disabilities 83 A. Labor Market status of PWD 83 B. Determinants of employment for PWD 90 C. Interventions to promote employment among PWD 92 D. Conclusions and recommendations 105 Chapter 6: Social Protection for People with Disabilities 109 A. Poverty Alleviation and Social Assistance Schemes for PWD 109 B. Disability Insurance in India 114 C. Recommendations 120 Chapter 7: Policies and Institutions for Persons with disabilities in India 123 A. Policies for disability in India 123 B. Institutional Issues in Implementing Disability Policies 131 C. Conclusions and recommendations 140 Chapter 8: Access for People with Disabilities 143 Conclusions and recommendations 150 Annex 1: Comparing the Incomparable: Disability Estimates in the Census and the National Sample Survey 153 Annex 2: Brazil's Reform of Census Questions on Disability 158 iv Figures Figure 1 Share of 6-13 year old CWD and all children out of school, 2005 xiii Figure 2 Employment rates by disability type and severity, 2002 xiv Figure 3 Share of PWD HHs not aware of entitlements xxi Figure 4 The ICIDH-2 Framework for Understanding Disability 2 Figure 1.1 Disability shares by type, census and NSS, early 2000s (% of disabled people) 9 Figure 1.2 Official disability rates by region, early 2000s 12 Figure 1.3 Disability transition in various Asian countries, 1990-2020 13 Figure 1.4 Relative share of PWD and severe PWD by asset quintile, UP and TN, 2005 14 Figure 1.5 Relative HH share with PWD by consumption and asset quintiles (community identification), UP and TN, 2005 14 Figure 1.6 Relative per capita HH consumption and land holdings by disability type, 2002 (hearing disabled as reference) 15 Figure 1.7 Kernel Density of Age at Onset of All Disability - 2002 16 Figure 1.8 Educational attainment for general population and by disability, 2001 17 Figure 1.9 Share of 6-13 year olds out of school by social category, 2005 17 Figure 1.10 Employment rates of PWD and non-PWD by gender and location, early 2000s 18 Figure 1.11 Marital Status of Women with and without Disability (1991&1993-4 for ages >15) 18 Figure 2.1 Belief that disability a curse of God, rural UP and TN, 2005 25 Figure 2.2 Belief that disability a curse of God by disability type, rural UP and TN, 2005 25 Figure 2.3 Acceptance of PWD marrying non-PWD 27 Figure 2.4 Opinion on need for dowry adjustment if PWD marries non-PWD 27 Figure 2.5 Women with disabilities reporting physical and sexual abuse, Orissa, 2005 27 Figure 2.6 Positive attitudes to PWD participation in community and political activities, UP and TN, 2006 28 Figure 2.7 Positive attitudes to PWD employment by disability by, UP and TN, 2005 28 Figure 3.1 Full Immunization coverage rates by state, 1998/99 and 2002/04 40 Figure 3.2 Number of poliomyelitis cases, by month and year ­ India, January 1998- May 2005 40 Figure 3.3 Demand and supply side linkages in health and disability 44 Figure 3.4 Proportion of disabled seeking any treatment 2002 47 Figure 3.5 Proportion of Aids and Appliances Acquired by Source 48 Figure 4.1 Illiteracy and primary attainment rates for all PWD, 2002 60 Figure 4.2 School attendance of PWDs, 5-20, by age and gender 61 Figure 4.3 School attendance for PWD, 5-20, by age and area 61 Figure 4.4 School enrollment of all children by age and location, various years 61 Figure 4.5 Share of 6-13 year old CWD and all children out of school, 2005 62 Figure 4.6 Share of Illiterate of 6-13 year old CWD by disability category, 2002 62 Figure 4.7 Annual enrollments of CWSN in regular schools, 2002-08 63 Figure 4.8 Share of CWD and non-CWD in public and private schools among those attending, UP and TN, 2005 63 Figure 4.9 Spending on IED as share of total SSA, major states, 2004-05 67 Figure 4.10 IED spending execution as share of allocation, 2004-05 67 Figure 4.11 IED expenditure execution as share of allocation for SSA, 2004-05 68 Figure 4.12 CWD identified by SSA in 2005 as share of 6-14 year old CWD in census by state 69 Figure 4.13 Share of accessible SSA schools, 2005 74 Figure 5.1 Employment rates of PWD and non-PWD, various countries 83 Figure 5.2 Employment rates of PWD and general population by gender and location, early 1990s 84 Figure 5.3 Employment rates of PWD and general population by gender and location, early 2000s 84 Figure 5.4 PWD and non-PWD employment ratio, early 1980s and 2000s 85 Figure 5.5 Employment rates by disability type and severity, 2002 85 v PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES Figure 5.6 Early 1990s 86 Figure 5.7 Early 2000s 86 Figure 5.8 Employment rates over the life cycle for PWD (LHS) and for non-PWD (RHS) 86 Figure 6.1 Main deterrents to application for social pensions by type of pension, Rajasthan, 2006 114 Figure 6.2 Coverage of health, life and pension insurance, 2004 115 Figure 6.3 Disability inflow rates for contributory pension members in India and selected Latin American Countries, 2000-2002 116 Figure 7.1 Share of PWD HHs not aware of entitlements 128 Figure 7.2 Governmental Structure for Policy and Implementation of Programs for the Disabled in India 132 Figure 7.3 Top Difficulties in Applying for PWD benefits and services, UP and TN, 2005 135 Tables Table 1.1 Disability rates from census and survey sources, early 2000s. 9 Table 1.2 Disability Prevalence rates by country and disability question method, various years 11 Table 1.3 PWD and general population social characteristics, 2002 13 Table 1.4 Non-income indicators for households with and without PWD, UP and TN, 2005 15 Table 1.5 Reported extent of disability among PWD, 2002 16 Table 2.1 Acceptance that children with disabilities should always attend special (top) and regular (bottom) schools, by disability type, UP and TN, 2005 26 Table 2.2 Positive perceptions of capacity of women with disabilities to have and care for children, UP and TN, 2005 (%) 26 Table 2.3 Government officials and education and health workers had the highest rates of negative attitudes towards PWD in Orissa 29 Table 3.1 Causes of Visual Disabilities (for Individuals with Single Disability (i.e Visual Only) 37 Table 3.2 Causes of Hearing and Speech Disabilities - 2002 37 Table 3.3 Causes of Locomotor Disability - 2002 37 Table 3.4 Causes of Mental Disability - 2002 38 Table 3.5 Proportion of road deaths by types of user and location 38 Table 3.6 Place of Incident for Burns and Injuries by Sex for PWD ­ 2002 39 Table 3.7 Cataract Surgeries under the National Blindness Control Programme 41 Table 3.8 Coverage of National Institutes for PWD by Type of Services 44 Table 3.9 Probability of PWD seeking health treatment, 2002 48 Table 3.10 Type of Service Accessed and Reasons for Not Using Services by PWD, UP & TN 48 Table 3.11 Disabled Individuals' Access to Aids and Appliances 48 Table 3.12 Results on Probabilities of Accessing Aids and Appliances 49 Table 4.1 CWD education attendance and attainment by severity, 2002 62 Table 4.2 Share of CWD attending regular and special schools, 2002 63 Table 4.3 Children missing school to care for disabled family members, UP and TN, 2005 64 Table 4.4 Expenditure allocation and execution on IED as share of total SSA spending, 2003-08 66 Table 4.5 Attitudes of teachers and classmates of CWD in UP and TN were positive 71 Table 4.6 There is low awareness of possibilities for aids, appliance and stipends and very low shares of beneficiaries in rural UP and TN 74 Table 5.1 Sectoral composition of PWD and general employment, early 1990s and early 2000s 87 Table 5.2 Current Activity Status among Working Age Persons, rural UP and TN 87 Table 5.3 Employment and wage rates of PWD relative to non-PWD by location, gender and severity, UP and TN, 2005 88 Table 5.4 The Working Age Employed: Work Hours and Days in rural TN and UP, 2005 89 Table 5.5 Missed work by adult HH members of PWD due to caring, UP and TN, 2005 89 Table 5.6 Probabilities of being employed among PWD by various characteristics, 2002 91 vi Table 5.7 The marginal effect of disability on employment probability is high for men, lower for women and higher for those with more severe disabilities 92 Table 5.8 Reserved posts for PWD identified and filled, early 2000s 94 Table 5.9 PWD placed by employment exchanges are very low and placement rates have halved over the past decade (in thousands) 98 Table 5.10 Disbursements and beneficiaries, NHFDC schemes, 1997-early 2008 100 Table 5.11 Disbursements and beneficiaries by state, NHFDC schemes, 1997-March 2008 101 Table 6.1 Proportion of PWD beneficiaries under SGSY, 1999-2004 110 Table 6.2 States/UTs with unemployment allowance (Rs), 2004 111 Table 6.3 Coverage rates of disability pensions by total HH population and HH with PWD, 2004/05 112 Table 6.4 Coverage of disability social pensions by wealth, location and social category, 2004/05 113 Table 6.5 Awareness of disability certification and cash benefits, rural UP and TN, 2005 114 Table 6.6 Contributions and benefit targets for mandated disability insurance in India 115 Table 7.1 Awareness of the PWD Act is very low and lower among PWD households than others 128 Table 7.2 Institutions providing benefits and services to PWD in rural UP and TN, 2005 135 Table A.1 Disability definitions in the Census and the NSS 156 Boxes Box 1.1 Different approaches to asking about disability in census and surveys 12 Box 1.2 Census questions on disability designed by UN Washington Group on Disability Statistics 19 Box 2.1 Disability in Indian mythology and Bollywood movies 24 Box 2.2 Development organisations successfully taking up disability issues at community level - Vikas Jyot Trust, Vadodara 30 Box 2.3 Changing attitudes of young people through dance 30 Box 2.4 Raising awareness and changing attitudes to leprosy 31 Box 3.1 Box 3.1: Community-Based Rehabilitation: The basics 46 Box 3.2 WHO's "Ten Question Plus" Screening Instrument 52 Box 4.1 International policy development on education of children with disabilities 59 Box 4.2 National Action Plan for Inclusion in Education of Children and Youth with Disabilities 60 Box 4.3 Main models of public educational financing, with different impacts on CWD and IE: 66 Box 4.4 Teacher attitudes to inclusive education in Mumbai 70 Box 4.5 Training on IE for regular and special educators 73 Box 4.6 Service delivery modes for CSN in IED 73 Box 5.1 International Experience with Quotas for PWD employment 95 Box 5.2 National Thermal Power Corporation Limited (NTPC) is setting an example in the public sector 96 Box 5.3 TITAN India shows that employing disabled people makes good business sense 97 Box 5.4 A Jobs Fair Bringing Employers and Disabled people Together for Mutual Benefits. 99 Box 5.5 Good practice in NGO skills training and employment promotion for people with disabilities: 104 Box 5.6 Knowing your Market: DISHA 104 Box 7.1 Key entitlements and commitments under the PWD Act, 1995 127 Box 7.2 Good Practice in State-level Disability Policy-The case of Chhattisgarh 130 Box 7.3 Innovations in Karnataka by the Disability Commissioner's Office 134 Box 7.4 Disability Fora in Tamil Nadu 137 Box 7.5 ADD India and the sangham approach to PWD SHGs 139 Box 8.1 Best Practices in Universal Design 144 Box 8.2 International and regional standards on promoting access for people with disabilities 146 Box 8.3 A Tale of Two Cities in One: Indraprastha Project and Delhi Metro 149 vii PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES T his report was prepared by Philip O'Keefe The team is also grateful for guidance received from the (Team Leader) who led a team composed of following people: Javed Abidi and his staff (NCPEDP); Venkatesh Sundararaman, Anupriya Chaddha, Mithu and Sathi Alur, and their colleagues at the Spastic and N.K. Jangira (Education); Maitreyi Das, Madhumita Society of India, Mumbai; Kevan Moll (VSO); Samir Puri and Namita Jacob (Health); Sophie Mitra and Usha Ghosh (Disability consultant); Geeta Sharma (Unnati); Sambamoorthi (Employment); Meenu Bhambani (Policies Shruti Mohapatra (Swabhiman); the late Ashok Hans and Institutions); Alana Officer (NGOs); Robert Palacios and Asha Hans (SMMRI); participants in the Kolkata (Social Insurance); Jeff Hammer (Framework); Sarabjit Inclusive Education consultation, and the Mumbai Singh (Access); and Shonali Sen (various chapters) Much workshop on Disability and Disaster Management, of the data analysis of NSS and other surveys was carried in November 2005; Sanjeev Sachdeva and Anjlee out by Corinne Siaens, whose work provided the basis Agarwal (Samarthya); Bhushan Punani (Blind Persons' for the socio-economic profile of people with disabilities. Association); Harsh Mander; the late Professor Ali Initial data set-up was done by Mehtab Azam. The report Bacquer (CAN); Anuradha Mohit (Director, National has also benefited from a survey and qualitative work Institute for Visually Handicapped); Shivani Gupta carried out in late 2005 in Uttar Pradesh and Tamil Nadu (AccessAbility); and staff of Action-Aid New Delhi. In by AC Nielsen/ORG-MARG by a team led by Sumit Kumar. particular, the team notes with sadness the passing of Ashok Hans and Ali Bacquer during the course of the The team benefited from the guidance of officials work, two men who were outstanding advocates and from the Ministry of Social Justice and Empowerment, inspirations to many in the disability field. Finally, the including Ashish Khanna, Additional Secretary, former team acknowledges the rich insights from participants Joint Secretary, Smt. Jayati Chandra, then JS for disability with disabilities, officials and civil society actors at a issues, and Mr. Ashish Kumar, Deputy DG, as well as Smt. joint GoI/World bank Workshop in Delhi in November Uma Thuli, former Chief Commissioner for Disabilities. 2007 where the report was discussed. There was also guidance provided by an inter-ministerial Technical Advisory Group set up for the work, chaired The report was prepared under the overall guidance of by MoSJE and consisting of representatives from Mansoora Rashid (Sector Manager for Social Protection, the Ministries of Health, Labor, Human Resource SASHD), Julian Schweitzer (Sector Director, SASHD) and Development, and Rural Development, as well as an Michael Carter (Country Manager for India). The team also NGO representative. In addition, Mr. Keshav Desiraju, benefited from useful inputs from peer reviewers, Daniel Joint Secretary, from the Ministry of Human Resource Mont (Disability and Development Unit, World Bank), Development supported the team's work. Officials in Barbara Harriss-White (Oxford University), Lant Pritchett various states ­ in particular in Rajasthan, Karnataka, (SASSD), and Jonathan Gruber (MIT), and the comments Orissa, Uttar Pradesh, Bihar and Tamil Nadu - were also of Fayez Omar (SASIN), Judith Heumann, Pia Rockhold helpful. In particular, the team notes the insights of the and Jeanine Braithwaite (Disability and Development late Dr. Madan Jha, Government of Bihar, who sadly Unit), and Dipak Dasgupta (SASPR). Tanusree Talukdar, passed away during the course of the work. In both his Karthika Nair and Gertrude Cooper provided excellent academic and official work, he was deeply committed to team assistance throughout the work. the cause of inclusive education. n viii Photography: Manjula Kalyan, Director, Swayamkrushi ix EXECUTIVE SUMMARY PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES x I. Introduction the framework for the report. It then presents the socio- economic profile of people with disabilities, describes 1. While estimates vary, there is growing evidence the societal attitudes faced by them, and identifies the that people with disabilities comprise between 5 and 8 main causes of disability in India. It then evaluates health percent of the Indian population (around 55-90 million policies and practice ­ both preventive and curative ­ individuals). This report, prepared at the request of and the education, employment, and social protection Government of India, explores the social and economic situation of people with disabilities. The report then has situation of this sizeable group. It comes over a decade a discussion of the policies and institutions affecting after landmark legislation promoting the rights of disabled people, before concluding with a chapter on persons with disabilities to full participation in Indian accessibility issues for people with disabilities. The report society, and finds that progress is evident in some areas. uses the so-called bio-psychosocial model of disability However, the policy commitments of governments in reflected in the ICIDH-2, which recognizes that personal, a number of areas remain in large part unfulfilled. To social and environmental factors are all at play in turning some extent this was inevitable, given the ambition physical or mental impairments into disabilities. That is, of commitments made, existing institutional capacity, the attitudes and institutions of society are seen to have and entrenched societal attitudes to disabled people significant impacts on the life opportunities of people in India. However, it also reflects a relative neglect of with disabilities. This model, along with other approaches people with disabilities through weak institutions and to disability, is outlined in the Introduction. poor accountability mechanisms, lack of awareness among providers, communities and PWD of their rights, 3. The main sources for the report are: (i) dedicated and failure to involve the non-governmental sector disability modules of the National Sample Survey more intensively. Most importantly, PWD themselves (NSS) in 1991/92 and 2002 which allow for nationally remain largely outside the policy and implementation representative analysis of persons with disabilities; (ii) the framework, at best clients rather than active participants 2001 census; (iii) a dedicated survey and qualitative work in development. There is also evidence in key areas like on the lives of disabled people and their communities employment that disabled people are falling further in rural UP and TN carried out for this report in late behind the rest of the population, risking deepening their 2005; (iv) a series of background papers commissioned already significant poverty and social marginalization. from Indian and international researchers on persons The slow progress in expanding opportunities for with disabilities and education, health, employment, disabled people in India results in substantial losses policies and institutions, and access; and (v) a rich pool to people with disabilities themselves, and to society of secondary sources from Indian researchers and NGOs, and the economy at large in terms of under-developed both quantitative and qualitative, and interactions with human capital, loss of output from productive disabled the Indian disability community and officials dealing people, and impacts on households and communities. with disability matters in various sectors. 2. The report explores primarily where and how 4. The report concludes that it will take a multi- it makes most sense for public sector interventions to faceted approach for disabled people to realize their improve the standard of living of disabled population, full individual potential and to maximize their social either directly or in partnership. To meet this objective, and economic contribution to society. Strengthening it first provides an overview of models of disability and preventive and curative health care services, ensuring xi PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES inclusion in education, and increasing the participation in local governments and community institutions in of disabled in the workplace will be essential. Also order to address a variety of market, government and critical will be improvements in available information on collective action failures. disability and reducing stigma about disability. Efforts to minimize disability (e.g., immunization, early detection, 7. The report also brings out the heterogeneity better outreach for rehabilitation) will be critical, but of the situation of and policy options for different more effective efforts to ensure inclusion of disabled in groups of disabled people in India. There are substantial basic services (e.g., inclusive education, health, social differences in socio-economic outcomes, social stigma, protection programs) will also be required. In some and access to services by disability type, with those with areas, this will require more public resources, but the mental illness and mental retardation in a particularly fiscal impacts of even significant proportional increases poor position. As with the general population, there are will be negligible and fiscally supportable. also major urban/rural differences in outcomes, though the policy implications differ in some cases from those 5. Although improvements are needed in of the general population. Gender, class and regional a number of areas, interventions will need to variations are also significant in many cases. While the be prioritized and sequenced if the agenda for report therefore attempts an overview of the situation promotion inclusion of people with disabilities of people with disabilities in India, it is also important to is to be realized. India's implementation capacity is stress such heterogeneity in order to explore implications generally weak in a number of areas of service delivery for public policy. The main findings of the report and which are most critical to improving the situation policy options for addressing disability are summarized of disabled people, and it is not realistic to expect below. that all the actions needed by many public and non- public actors can be taken all at once. It is important II. Socio-economic Profile of People therefore to decide the most critical interventions and with Disabilities (Chapter 1) "get the basics right" first. Obvious priorities include: (i) preventive care, both for mothers through nutritional 8. While official estimates of disability are low interventions, and infants through both nutrition and (around 2 percent), alternative estimates using better basic immunization coverage; (ii) identifying people methods and more inclusive definitions suggest a with disabilities as soon as possible after onset. The higher incidence of disability (of at least 5-8 percent). system needs major improvements in this most basic GoI's own 11th Five year Plan acknowledges that at least function; (iii) major improvements in early intervention, 5-6 percent of the population have disabilities and which can cost effectively transform the lives of disabled WHO estimates of the disabled population of India are people and their families, and their communities; and considerably higher again. The 2001 census found 21.91 (iv) expanding the under-developed efforts to improve million PWD (2.13 percent of the population), while the societal attitudes to people with disabilities, relying on 2002 NSS round's disability estimate is 1.8 percent of the public-private partnerships that build on successful population.1 The share of households estimated by NSS models already operating in India. to have a disabled member was 8.4 and 6.1 percent in rural and urban areas respectively (though this share 6. While the public sector will continue to seems high given the number of disabled individuals play a critical leading role in disability policy and and survey results on their household size). Alternative framework for service delivery and has binding estimates from a variety of sources suggest that the actual obligations to its disabled citizens to do so, the prevalence of disability in India could be easily around 55 study finds that it is neither possible nor desirable million people, and as high as 90 million if more inclusive for the public sector to "do it all". Operationalizing ­but still reasonably conservative - definitions of mental this insight will require stronger coordination of efforts illness and mental retardation in particular were used.2 within the public sector, greater engagement between Just as importantly, the bulk of disabled people in India public and non-public actors, and mobilization of actors have mild to moderate disabilities. 1 Significantly, the two differ notably on the composition of the disabled population by type of disability. The differences are in part explained by different disability definitions in NSS and census. 2 See GoI/WHO and Dandona et al (2004) on visual and Gururaj and Isaac (2005) on mental impairments. xii Out of school rates for CWD are high in all states and CWD account for a higher proportion of all out of school children as overall attendance rates increase FIGURE 1: SHARE OF 6-13 YEAR OLD CWD AND ALL CHILDREN OUT OF SCHOOL, 2005 60 CWD All EXECUTIVE SUMMARY 50 % of cohort out of school 40 30 20 10 0 Assam Bihar Delhi Har Jhar Karn Kerala MP Maha Oris Punj Raj WB J&K UP AP TN Source: SRI survey for MHRD, 2005. 9. The medical causes of impairments are rapidly compounded by poor education outcomes, and changing in India - from communicable disease to non- children with disabilities (CWD) have very high out communicable disease and accidents. Between 1990 of school rates compared to other children. As for any and 2020, there is predicted to be a halving of disability due other group, education is critical to expanding the life to communicable diseases, a doubling of disability due to prospects of people with disabilities. Disabled people injuries/accidents, and a more than 40 percent increase in have much lower educational attainment rates, with 52 the share of disability due to non-communicable diseases. percent illiteracy against a 35 percent average for the This reflects long term trends in fertility reduction and general population. Illiteracy is high across all categories aging, increased road congestion, poor workplace safety of disability, and extremely so for children with visual, practices, stubbornly poor nutritional outcomes, and multiple and mental disabilities (and for severely disabled progress in reduction of communicable diseases. In children of all categories). Equally, the share of disabled terms of age of onset, there is "double hump" of disability children who are out of school is around five and a half onset, first shortly after birth and then in the 50-60 year times the general rate and around four times even that old cohort. In addition, the age profile of disability onset of the ST population. In even the best performing major varies sharply by category of disability. states, a significant share of out of school children are those with disabilities: (in Kerala, 27 percent; in TN over 10. For some impairments (e.g., speech and 33 percent). Indeed, evidence from more advanced hearing), illness and disease remain major causes, states demonstrates that CWD remain perhaps the most while for others such as visual disability age is a difficult group to bring into the educational net even major driver. For mobility disabilities, the causes are where overall enrollments are very high. Across all levels shifting from a dominance of polio to a more mixed set of severity, CWD very rarely progress beyond primary of causes. For several disabilities, in particular mental school. This underlines the importance of getting CWD illness and mental retardation, the causes of disability are into school if India is to achieve the education MDGs.3 often unknown, indicating the major knowledge gaps in current disability research. 12. Disabled people also have significantly lower 11. Physical and mental impairments are employment rates than average, and this gap has 3 Around 90 percent of CWD who have ever attended school attend a regular rather than special school. This brings home that the choice facing most CWD is whether they are out of school or in regular school. xiii PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES been increasing over the past 15 years. The large 13. A recent adverse development is the decline in majority of PWD in India are capable of productive the employment rate of working age disabled people, work. Despite this fact, the employment rate of disabled from 42.7 percent in 1991 to 37.6 percent in 2002. population is lower (about 60 percent on average) than The fall was almost universal across the country, but the the general population, with the gap widening in the extent varies greatly across states. The gap between the 1990s.4 Controlling for other factors, having a disability disabled and general population employment rates also reduces the probability of being employed by over 30 widened for all education levels during the 1990s, and percent for males in rural UP and TN, though the effect is disabled people with lowest educational attainment lower for women. However, those in rural areas and the have fared the worst. Improving job prospects for the better educated (those with post graduate education or disabled will be critical for improving their welfare, but vocational training) have relatively better prospects of also ensure that the economy can benefit from full labor employment relative to other disabled people. People potential. However, public sector initiatives to date with certain types of disabilities, e.g., hearing, speech in this regard have had only very marginal impact on and locomotor disabilities, and those with disability employment outcomes for disabled people. since birth also have better chances of getting a job. Mental illness and particularly mental retardation have 14. The attitudes of communities and families a strong negative impact on the probability of being in which disabled people live, as well as of PWD employed, even in cases where such disabilities are not themselves, contribute to converting impairments severe. The presence of a disabled member also has into disabilities (see Chapter 2). Qualitative research into impacts on the labor supply of other adult household attitudes to PWD in India finds that households generally members. Around 45 percent of households in UP and believe that disability is due to the "sins" of disabled TN with a PWD report an adult missing work to care people or their parents and hence deserved in large for PWD member, the bulk of these every day and on measure. Equally, communities have poor assessments average for 2.5 hours. However, other adult men are of the capacities of disabled people to participate in key more likely to be working in households with disabled aspects of life, with negative opinions on the capacity of members, due to the need to compensate for lost disabled children to participate in regular school and for income. disabled adults to be effective members of the workforce Employment rates of PWD are low, but vary sharply by type of disability FIGURE 2: EMPLOYMENT RATES BY DISABILITY TYPE AND SEVERITY, 2002 70 60 % of working age population 50 40 30 20 10 0 Loc om otor M ultiple M oderate MI H earing S ev ere V is ual S peec h MR A ll P W D Source: Mitra and Sambamoorthi, based on NSS 58th round. 4 It is important not to attribute these differentials entirely or automatically to discrimination, as many factors are at play, including lower than average educational levels and the nature of some disabilities. However, analysis in the report finds a significant unexplained element in employment participation probabilities (see Chapter 5). xiv still dominant. While general opinions on participation sector needs to respond more proactively to disability. of persons with disabilities in community life are more In a context of a health sector facing major challenges open, they often do not appear to be realized in practice. in achieving adequate coverage and quality of care for Negative attitudes towards some disabilities are much the entire population, it will be important to prioritize more pronounced than others, with those with mental disability-related interventions. illness and mental retardation the most marginalized. EXECUTIVE SUMMARY 17. Success in reduction of some communicable Most worrisome, both families of disabled people and diseases has not been matched by improvements in people with disabilities themselves often share the the general public health system in areas which have low opinions of their communities of the capacities of significant impacts on disability. A large proportion of disabled people to be independent and productive disabilities in India are preventable, including disabilities members of society. This internalization of negative that arise from medical issues surrounding birth, from attitudes reinforces social marginalization. Changing maternal conditions, from malnutrition, and from causes societal attitudes ­ in families, service providers, and such as accidents and injuries. However, programs to disabled individuals, and the community at large ­ will address these are weak. One example is ineffective be critical if disabled people are to realize their full social programs for addressing micronutrient deficiencies, and economic potential. where India maintains stubbornly poor nutritional outcomes (and where interventions such as expanding 15. Low educational attainment, poor access to iodized salt or food fortification are highly cost employment prospects and stigma mean that PWD effective). A second critical area of the general health and their households are notably worse off than system is reproductive, maternal and child health. Access average. The UP and TN survey clearly finds higher to care during pregnancy and delivery is poor in India. In rates of disability in poorer households, as well as lower the three years preceding NFHS-2, 35 percent of pregnant frequency of three meals a day in PWD households. women received no antenatal care: only a marginal This is supported by national evidence from NSS such improvement on the early 1990s, and with high-risk as the 20 percent higher rural share among PWD groups still with less access to care. The hard-won battle households, and high rates of widowhood for disabled against some communicable diseases may also be in women (around 4 times that of non-disabled women). jeopardy. There appears to have been a worrying decline The quantitative findings are supported by unanimous in immunization rates at the national level. On a national findings from qualitative work in a number of Indian basis, full immunization coverage has declined from 54.2 states (including Gujarat, AP, TN, UP, MP, and Orissa) to 48.5 percent in only 5 years. that households with disabled members are poorer and more vulnerable than the general population. 18. Policy and practice indicate that the bulk of In addition to evidence of lower living standards of both prevention and treatment of disability will people with disabilities, it is important to stress what continue to happen as part of the broader public and Amartya Sen has termed the "conversion handicap", curative health delivery systems. The challenges of whereby people with disabilities derive a lower level Indian health systems have been discussed elsewhere of welfare from a given level of income than the rest and are outside the scope of this report, but are critical of the population, due to additional costs incurred in to prevention and to the lives of disabled people, who converting income into well-being. have generally greater needs for health system support. However, disability-specific interventions are important III. Policies and Programs: also, and have received less attention. Generally, the focus of PWD-specific public interventions has been Key Issues Health (Chapter 3) rehabilitation. Technological support on rehabilitation is 16. India's progress on specific disabling diseases provided by the National Institutes on disability, though in has been impressive in some cases. The most dramatic recent years, India is increasing emphasis on community is the reduction in polio, though the almost total based approaches even in public interventions. Perhaps elimination of new leprosy cases in official statistics is the most interesting services being offered to people with also an important achievement. However, considerable disabilities are Community Based Rehabilitation (CBR), challenges in tackling the outstanding agenda in both which has been effective in rural areas in addressing the preventive and curative care remain, and the health primary care and therapeutic needs of PWD. The concept xv PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES is institutionally flexible and can be operationalized by divisions hinder coordinated and inclusive education. communities, NGOs and government, separately or in They include split management of education of CWD partnerships. between MHRD (responsible for education of CWD within the general system, which accounts for the 19. The likelihood of seeking health care differs large majority of CWD who are attending school) and across disabled groups.5 Firstly, evidence from NSS MSJE (which is responsible for most special education shows that those disabled from birth are much less facilities), weak coordination on teacher training likely to seek care. Secondly, women with disabilities between Rehabilitation Council of India and the were somewhat less likely to seek care, and even less general teacher training system with respect to special likely to have assistive appliances. Regionally, access needs, lack of coordination in early identification of to care appears to be lowest in the North-East and children with special needs, and belated (though eastern regions, while those in urban areas throughout growing) efforts towards convergence between India are much more likely to have sought care. As with government and NGOs/communities. The budget for the general population, higher levels of education inclusive education and its effectiveness is also limited. substantially increase the access to health care, as does Overall, the spending share on inclusive education in co-residence of the person with disabilities with their SSA is low, at only 1 percent nationally, with major parents. variation in spending share between states. Perhaps 20. Many factors drive low access to care among more important, expenditure execution on IE was people with disabilities: (a) current disability until recently among the lowest of SSA heads (under identification and certification system functions poorly, 35 percent in 2004/05, though rising sharply to 66 with poor skills among providers, awareness among PWD percent in 2005/06) and also exhibits large variation low, and rural outreach poor; (b) the available evidence across states. This is at one level not surprising, as IE is indicates that provider attitudes remain a constraint on an inherently challenging area to develop models for PWD access to health services; (c) community attitudes effective public expenditure. also continue to be a constraint on raising the profile of health services for PWD, particularly with mental illness; 23. Poor identification and access of disabled (d) physical accessibility of health facilities is a significant children to the education system. First, the system issue, and more acute at higher levels of the system; (e) for early identification of children with special needs as PWD households are poorer than average, financial is ineffective, though there have been noticeable barriers to access are higher. In addition, PWD have improvements in outcomes in the most recent years higher than average need for health services, and incur (with the share of identified CWD in total children higher expenditures; and (f ) mental health is an area that at elementary level doubling between 2003/04 continues to suffer particular neglect in both policy and and 2006/07 to 1.5 percent). There are significant implementation. discrepancies in the number of disabled children identified in census data, DISE, and SSA surveys, Education (Chapter 4) suggesting shortcomings in the SSA process for 21. While education policy in India has gradually identifying children with special needs. Second, the increased the focus on children and adults with special physical accessibility of not only school premises and needs, and inclusive education in regular schools has facilities but also accessibility from the child's home is become a clear policy objective, there are several reasons limited. Official statistics on barrier free access indicate for poor education outcomes for disabled people. that basic education in India is not physically accessible for most children with disabilities. Third, financial 22. Weak institutional coordination, poor incentives and aid/appliance support for CWD to expenditure performance, and a range of issues facilitate participation in regular schooling are limited in delivery of education limit the inclusion of and survey data indicate that there is low awareness of children with disabilities in education, though these schemes. While assistive technologies are a right there has been marked progress in recent years at under SSA, they are in practice rationed, making them the primary level under SSA. Several institutional instead a privilege. Indeed, only around 15 percent of 5 Similar findings emerge for access to aids and appliances among PWD. xvi children nationally had access to aids and appliances, Employment (Chapter 5) despite evidence of their positive association with 25. There are a range of public programs to school attendance. This is a challenge not only for promote PWD employment, but their impact has been SSA, as its model is one of convergence with other negligible and largely confined to urban areas. This is public programs such as ADIP under the MSJE, which in part due to weaknesses in design and implementation. are in some cases the funding source. However, it EXECUTIVE SUMMARY Broader impacts on employment outcomes for people suggests that coordination mechanisms could be with disabilities will be dependent firstly on efforts to strengthened to promote better outcomes, whatever change perceptions on the productive contribution that the source of financing and provision. Finally, while disabled people can make, an effort that will require provider attitudes towards inclusion of children with engagement of the public, private and NGO sectors. disabilities are gradually improving, there appears to be less movement with respect to general community 26. Public sector employment reservations exhibit attitudes and those of parents of CWD, who still poor outcomes due to design and implementation generally do not support inclusive education. problems. Despite a 3 percent reservation in public employment, as of 2003, only 10 percent of posts in 24. The quality of the education available for public employment had been identified as "suitable" students with special needs is also limited, but for PWD. As a result, the share of PWD in all posts thus several states have made positive starts. First and remains negligible, at 0.44 percent. A second feature of foremost, there is an absence of coherent government the quota policy is that it applies only to three disability strategies for promoting inclusive education in many types ­ locomotor, visual and hearing ­ which limits states. However, the experience of states like TN and many other disabled people from accessing jobs. A Gujarat offers cause for hope, with directed strategies final and broader question on the policy is consistency for public/NGO partnerships to improve coverage with good international practice, which in the area of and quality of IE. Second, curriculum and learning disability is moving away from quota-based approaches. materials, which are adapted to the learning needs Even if the quota system is retained, there is significant of disabled children both in content and format, are scope to improve it. not readily available in most states. This applies both to adaptation of regular curricula and to differences 27. Private sector employment incentives for hiring in curriculum between special and regular schools. disabled people are few and piecemeal. The PWD Act However, experience even in poor states such as makes provision for a private sector incentives policy, Orissa shows that through collaborations between with a target of 5 percent of the private sector workforce the government and NGO sectors gradual results being people with disabilities. However, neither GoI are possible. In addition, there is under-coverage of nor states have introduced a general incentives policy teachers and administrators who are sensitized to the (though there is a specific new incentive provided for rights and needs of CWD in education, and are equipped formal sector workers in the 2007/08 budget). In the with basic skills and access to resource personnel late 1990s, employment of PWD among large private and materials. To date pre-service training of regular firms was only 0.3 percent of their workforce. Among teachers includes no familiarization with education multinational companies, the situation was far worse, of special needs children. While the coverage of basic with only 0.05 percent being PWD. However, there are sensitization courses under SSA is growing, penetration a number of private and public sector firms which have of RCI training remains very limited. Finally, there was far better performance on PWD hiring, and offer good until recently an ineffective system for monitoring and practice examples of more inclusive workplaces. evaluating the educational attendance and attainment of CWD that would help inform the development of 28. A national network of special employment inclusive education strategies and allow feedback on exchanges for disabled people exists, but plays a their performance. The new tools developed by NCERT negligible role in promoting their employment. in this respect, and training of states in their use, are a Employment exchanges exist in state capitals, but positive step, and evaluation of their use in due course overall, the link between employment exchanges and will reveal how much improvement can be achieved in establishments in the private sector is weak. As a result, this area. the job placement ratio is very low for both special xvii PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES and other exchanges, 0.9 percent and 0.7 percent of sector. There are a range of good practice examples like registered PWD respectively in 2003, and has roughly the WORTH Trust that can be built on in the future. At halved over the past decade. The downward trend the same time, several common weaknesses of NGO reflects shrinking job opportunities in the public sector, programs can be observed. First, most have a strong and a general failure of exchanges to reach out to private urban bias, as well as under-representation of women employers. trainees. Second, many NGOs acknowledge a lack of qualified trainers. Third, as in the public sector, NGOs 29. A financial assistance program for entre- frequently failed to undertake sufficient assessment preneurs with disabilities exists, but few beneficiaries of the local labor market conditions in determining have been served. The National Handicapped Finance courses for PWD. Monitoring of employment and and Development Corporation (NHFDC) was established wage outcomes for PWD trainees tends not to happen. in 1997 to provide financial assistance to disabled Despite their challenges, NGO experience overall seems entrepreneurs. However, between 1997 and 2005, the more positive than public sector interventions to date number of NHFDC beneficiaries was negligible - only in promoting skill and employment for people with 19,643. Even among the small client base, there is a strong disabilities. gender and disability bias. In addition, disbursements have been very low, in part due to long lags between 32. While not only a public sector-backed receipt of funds and loan disbursement. If NHFDC is to intervention, the promotion of self-help groups reach more beneficiaries, the structure of the schemes for PWD by some states has proven to date to be a needs to be revised so as to give channelling agencies, promising channel for promoting not only self- MFIs and banks better incentives to participate, together employment but also other social objectives and with improved accountability for channelling agencies. empowerment of PWD.6 Given the importance of self Equally, awareness of schemes among potential and family-based employment in the Indian economy beneficiaries is very limited. generally, the focus of SHG livelihood interventions is particularly appropriate. There is also a range of 30. GoI provides vocational services to disabled experience in the NGO sector, particularly in southern people, but coverage is low and its impact is not states, where SHGs have proven successful, in a number known. Vocational Rehabilitation Centers (VRCs) have of cases developing from CBR interventions and indeed been established in state capitals to provide vocational increasingly integrated into good practice CBR in India training to disabled people based on a PPP model. The and many other developing countries. In recent years, the main tasks of VRCs are to make vocational assessments most rapid spread of PWD SHGs has however been done of PWD and to provide short term training. Some also as a partnership between public and non-governmental provide job placement services. VRCs generally do sectors, as seen most clearly in Andhra Pradesh under not seem to make regular efforts to update the skills the IKP (formerly Velugu) programme and more recently imparted along with shifts in labor demand. Like other in Tamil Nadu. Even in a select number of mandals in AP active labor programs for people with disabilities, the where IKP was active with PWD SHGs, membership grew size of the VRC program is very small, rehabilitating only quickly in 2-3 years to involve just under 134,000 PWD about 10,500 persons a year. In addition, there seems or around 32 percent of all PWD identified in screening to be a lack of focus on placement, with no evidence to exercises. In TN, at least 2,500 PWD SHG were formed date of net positive impacts on labor market outcomes during 2007/08. for trainees. Social Protection (Chapter 6) 31. An expanding number of NGOs have become 33. The social protection system for PWD active in vocational training of PWD and direct consists of social safety net and social insurance employment generation, but the majority with interventions, but these have had only small impacts no accreditation process. The majority of NGOs are on welfare levels of the disabled poor. There are a oriented towards skills for sheltered, group and self- range of social protection schemes targeted to PWD: employment rather than employment in the organized These programs include (i) Safety nets: reservations 6 See ILO's AbilityAsia series on training and employment of people with disabilities, which includes a number of cases studies from Asia. See also the ILO/UNESCO/WHO CBR Guidelines, which also address SHGs and livelihood opportunities for PWD. Also see various pieces of Thomas and Ramachandran. xviii under various centrally sponsored anti-poverty but have considerable latent demand. There are two programs, unemployment allowances for PWD, and main problems with the current arrangements for social "social pensions" for destitute PWD, i.e., monthly social insurance, including disability insurance. The first is assistance cash benefits and (ii) Insurance: different related to the small share of the formal sector. Coverage forms of insurance in cases of disability, including is therefore low and concentrated in the top half of schemes for civil servants and the formal private sector, the income distribution. The second problem relates EXECUTIVE SUMMARY and schemes for informal sector workers which address to financing. In the case of civil servants, the financing the health services needs of PWD. comes directly from the budget, with no reserves set aside. This is starting to change however, as a new defined Safety Net Schemes contribution scheme is being phased in for new civil 34. Safety nets for PWD offer low coverage and service hires. Demand for disability insurance among the limited financial protection. The PWD Act commits unorganized sector is evidenced by the growing number to reservations for PWD of not less than 3 percent in all of SHGs, welfare funds and micro-insurance offerings poverty alleviation schemes, but it appears that PWD are in this area, as well as public schemes like JBY which well below 3 percent of beneficiaries in all schemes. For in 2006 covered around 3.6 million workers. However, example, SGSY coverage rates between 1999 and 2004 membership in group schemes is limited (less than 5 per were around 0.8 percent of total program beneficiaries, cent) and not all offer disability benefits. The prevalence accounting for only 0.7 percent of the working PWD of disability benefits in micro-insurance schemes appears population. For IAY, the beneficiary share in recent years to be even more limited, with only one quarter offered has been around the same. For SGRY, in the budget years disability benefits (almost always lump sum payments). 2002-04, the share of works for disabled was between There is very little solid analysis available on how well 0.2 and 0.9 percent of total, and the new National Rural these schemes function. Employment Guarantee Act has dropped the provision 37. As of 2008, there are two notable initiatives for reservations for disabled people. India also has social that may eventually lead to significant changes in assistance cash payments for destitute elderly, widows the coverage and financing of disability insurance in and PWD. All states/UTs for which data are available have India. In 2005, a special commission was established disability social pension schemes, though coverage in with a mandate to make recommendations on how to different states exhibits wide variations. Nonetheless, expand social security coverage to the unorganized it is estimated that around 14 percent of PWD receive sector. The mandate extended to consideration of a disability social pension, which makes it the most benefits in a number of areas including old age, death, significant cash transfer program for this group. While maternity, health and disability. This resulted in recent the unemployment allowances for PWD are anticipated umbrella legislation on these forms of social insurance in the PWD Act, few states have such schemes. for BPL households. It is already being implemented in part through an innovative health insurance scheme 35. Several factors limit the effectiveness of safety for BPL households, the RSBY. This covers pre-existign net programs. Low program impact is a product of low conditions and could therefore be of special importance awareness among PWD of programs, weak channels for to those with disabilities. There is also a disability and increasing demand (e.g., linking SHGs of disabled people life programme for BPL, the Aam Aadmi Bima Yogana to targeted credit), and in many states a lack of focus on for rural landless households, though the design and the area of social protection for PWD (as absence of UA implementation of this to date raise questions about and low social pension coverage indicate). The disability how much impact it will have for the poor. social pension appears to date to have the most effective outreach in several states. In contrast, the system of 38. The second initiative is a draft bill to introduce reservations under poverty alleviation schemes has a New Pension Scheme (NPS). This would be available clearly failed to achieve the desired outcomes. to any individual not already obligated to participate under the EPFO Act. When the NPS goes into effect, it will Disability Insurance Schemes theoretically provide a platform for pension provision 36. Disability insurance schemes have low that would extend to both civil servants and informal coverage, with financing mainly from the budget, sector workers. However, the NPS has yet to define a xix PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES disability or survivors benefit. This will be necessary at and early detection of disabilities little more than some point. While in principle adding a group insurance statements of intent. policy for death and disability to a DC scheme of this 41. In the period 1998-2003, just under Rs. kind is relatively simple, a number of implementation 1042 crore was spent by MSJE on the disability challenges remain. First, in India (and in most developing sector. This represents a negligible portion of total countries), relevant mortality statistics are not available. budgetary spending. In recent years, this has ranged Second, the private insurance market is still at an early from 0.05 to 0.07 of total GoI spending, indicating the stage in development and does not have experience low priority placed by GoI on core programs for PWD. with annuity products. While spending under other ministries has risen in some cases (e.g., education under SSA, which ha seen a Disability Policies and Institutions significant increased in spending on inclusive education (Chapter 7) initiatives), consolidated figures for spending on PWD 39. India has one of the more developed disability are not available. Aside from level of spending, it is policy frameworks of developing countries, but there difficult to assess the effects of spending due to under- remain a number of policy shortcomings in the PWD developed monitoring and evaluation systems. While Act's design. The public implementation institutions are recent initiatives such as AABY and the new employment relatively weak and under-resourced, but NGOs have incentive for PWD indicate an increased willingness on developed some promising approaches. the part of GoI to increase resources to the disability sector, it remains to be seen what will be the effectiveness 40. The Persons of Disabilities Act, 1995, is a of program outreach and expenditure execution. cornerstone of disability policy, while in many respects ground-breaking, has some weaknesses in 42. In early 2006, a National Policy on Persons with design. India has a long experience of policy and practice Disabilities was approved by GoI. While a welcome with respect to disability dating back to the 19th century, measure, it could do significantly more to propose with the most recent approach embodied in the Persons concrete strategies for realizing the entitlements of with Disabilities Act, 1995 (PWD Act). The Act represents people with disabilities, more so in light of India's a major step forward in policy towards disabled people obligations as a result of its accession to the UN in India. Despite being ground-breaking in recognizing Convention on the Rights of Persons with Disabilities. the multi-faceted nature of disability beyond mere In addition, there continues to be very limited reference medical intervention, there are some weaknesses its to the role of people with disabilities themselves as active design. First, the Act covers only designated types of participants in realizing the objectives of policy. However, disability, which are not inclusive of several significant despite the overall Policy, sectoral policy has progressed categories of disability (e.g., autism). This is in part significantly in education, with inclusion of CWD into driven by the linkage between the legal definition of mainstream education increasingly accepted in recent disability and entitlements. Second, entitlements are years. At the state level, there remains a basic question often legally framed in a general manner, which does in many states of limited political buy-in by many states not facilitate enforcement, and/or not linked to any to the commitments of the PWD Act. To date, the only sanctions for non-compliance. This is compounded by states that have draft disability policies are Chhattisgarh a rather weak enforcement mechanism, with no direct and Karnataka. The latter largely mirrors the structure and enforcement authority granted to the Act's watchdog major provisions of the PWD Act, without in most areas ­ the central and state Commissioners for Persons with providing more specific commitments or implementation Disabilities (CPWD), which has quasi-judicial powers. guidance. In contrast, the Chhattisgarh draft state Third, the approach of the Act has rather limited roles disability policy can be considered "best practice" within for actors outside the administrative framework, India, and could provide a model for future national and including NGOs/DPOs, PWD themselves and PRIs. state-level policy development (see Chapter 7). Finally, commitments on health are particularly weak, with combination of the economic capacity proviso and 43. There is limited awareness of the entitlements general language making the provisions on prevention of the Act--a key constraint in implementation.7 A 7 CAG (2004). xx Awareness of entitlements under PWD Act is also low, though with strong state variation FIGURE 3: SHARE OF PWD HHS NOT AWARE OF ENTITLEMENTS Transport subsidy TN Job reservation UP EXECUTIVE SUMMARY Education stipend Employ exchange Subsidy on credit Aids/appliances Food ration PWD benefit PWD certificate 0 10 20 30 40 50 60 70 80 90 100 % Source: UP and TN Village Survey (2005). key ingredient of effective implementation is awareness questionable. Two examples are special education and of entitlements. Evidence from various sources indicates early identification of disability, where the MHRD and that awareness of the PWD Act remains very low, and Ministry of Health together with Women and Child lower among households with PWDs than others. While Development Ministry respectively are the appropriate awareness of specific entitlements is higher, it remains lead agencies. In addition, there is a broader challenge low for most benefits (see Figure 3). In addition, for those of "convening power" of MSJE relative to ministries PWD who are aware of benefits/services, a substantial which it must coordinate. What this points towards is share of PWD report difficulties in accessing them. the unusual importance in disability of inter-sectoral Very little empirical evidence exists of the interactions institutional coordinating mechanisms. To address of PWD with the official institutional network, but this this, the PWD Act mandates central and state-level study confirms that around 43 percent of those eligible Coordination and Executive Committees, which are in UP and TN had not received any benefits or services. intended to be key institutions in development of Three main challenges in receiving benefits and services disability policy. Unfortunately, according to GoI's own include: (i) physical access problems; (ii) problems assessment, the track record of these coordinating with procedures and officials; and (iii) communication institutions is poor, with few exceptions. Finally, in difficulties for disabled people in approaching providers. addition to no direct enforcement authority (noted In addition, the institutions from which PWD most often above), the CPWDs have limited capacity to perform reported receiving services and benefits were at district their `watchdog' function effectively, in many states level, though panchayats were growing in significance. having skeletal staff levels. Despite this, Karnataka has managed to develop one of the more active 44. Implementation is made more challenging in commissioners' offices, introducing a range of initiatives part due to a nodal Ministry with limited resources such as multi-sectoral district disability management and convening power, and weakly functioning reviews and lok adalats (peoples' courts) specifically on coordinating institutions in much of the country. the rights of disabled people. Finally, PRIs are largely Implementation is also constrained by a complex absent in public sector disability policy and practice, institutional framework for operation of the disability making the institutional framework for disability sector in India. The nodal agency for disability is the increasingly out of line with broader developments in Ministry of Social Justice and Empowerment (MSJE). decentralization of service delivery. There are inherent challenges for any nodal ministry in a multi-sectoral field as disability. That said, there 45. The disability NGO movement has contributed are areas where having MSJE as lead agency seems greatly to promoting the interests of PWD. In light of xxi PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES the major challenges facing public sector institutions for is somewhat vague. Indeed, there are no specific PWD, non-governmental institutions assume unusual enforcement provisions or sanctions for failure of significance. There are acknowledged shortcomings in authorities to be proactive in undertaking their the capacity of the disability NGO sector to grow into an obligations under the Act. Nor is a mechanism spelt expanded role, both in its own right and as a partner of out for how authorities should move to implement government. Many NGOs have links with public agencies, the Act's provisions, e.g., amendment of bye-laws, etc. predominantly for contracting out of services, technical While the PWD Act can be considered a starting point in assistance and training. While results have in many promoting accessibility, there is clearly a significant need cases been positive, there remain concerns about weak to build on it. There has been progress on the policy side monitoring of NGO performance and accountability for in promoting accessibility since the Act. The Ministry use of public funds. Consultation between the public of Urban Affairs and Employment issued Guidelines and NGO sectors on disability policy issues also remains and Space Standards for Barrier Free Built Environment under-developed, both at the centre and in most states. for Disabled and Elderly Persons in 1998 (with a similar In addition, the monitoring and evaluation role for document from the Chief CPWD Office). This is a guiding NGOs seems one that could be developed within public document to central and state authorities in modifying interventions. their bye-laws, and applies to most construction other than domestic buildings. In addition, the latest 2005 46. While both public and NGO institutions are revision of the National Building Code (NBC) includes important, informal institutions ­ primarily the family provisions for buildings, services, and facilities for ­ remain the most important factor in the lives of people with disabilities. The NBC acts as a model code PWD. Families­ particularly the women in families ­ play for construction by Public Works Departments, other a critical role in providing support to PWD. The family is public agencies and private construction companies. not however an unambiguous source of support for PWD The documents do not have direct force, though are in several ways: (i) it may be over-protective; (ii) it may of course important standards and sources. In order to ­ consciously or not ­ favour non-disabled household make them legally binding, they need to be adopted into members; and (iii) it may be a direct source of harm to local building bye-laws for construction and systems for the PWD member (as evidence on physical and sexual approvals. To date, around 16 states have modified their abuse of disabled women indicates). Previous research bye-laws or adopted new ones, with others in the process and that for this report indicates quite clearly that there of doing so. is a major awareness raising agenda on disability among family members of PWD, and even among people with 49. There is much evidence, both quantitative disabilities themselves. and anecdotal to indicate that accessibility for PWD remains a largely unrealized goal in India to date. Accessibility for People with Disabilities One of the major issues in promoting access for people (Chapter 8) with disabilities is that of institutional coordination. 47. Many of the rights provided for people with Particularly for the built environment, there are in most disabilities in India can not be realized without cases a range of line agencies and other local authorities ensuring that the services to which they are entitled responsible for infrastructure. This frequently results in no are accessible, and that barriers to access in the single agency considering itself responsible for making broader environment are reduced. Overall, while the built environment accessible, and/or problems with India has standards on promoting access to the built very partial accessibility in the face of uncoordinated environment and basic services, it faces major challenges action. The institutional issues in promoting access reflect in implementation due to a combination of institutional deeper challenges of accountability. In this respect, the coordination challenges, poor enforcement mechanisms, PWD Act itself is not of great use in terms of establishing and lack of awareness of the needs of people with clear lines of accountability for ensuring that accessibility disabilities. standards are adhered to. A further important weakness in improving accountability has been the general lack 48. The provisions on access for people with of consultation with people with disabilities themselves disabilities in the PWD Act are framed as contingent in prioritizing investments to promote access, and in entitlements, but the nature of the legal obligations monitoring access outcomes. xxii 50. Despite the constraints, various channels have certification that exploit private sector medical capacity proved useful in promoting accessibility. The courts in the face of serious public sector supply constraints on have played a role in promoting the access commitments certifying doctors. of the Act, both directly in relation to physical access provisions (e.g., to transport), and in broader areas of civil 54. Minimizing the incidence and severity of participation such as access to polling stations. Another disability: Cost effective interventions to minimize EXECUTIVE SUMMARY simple but more powerful tool in promoting accessibility disability need to be strengthened, including iodization has been the growing practice of access audits, generally of salt (recently made mandatory once more), and by NGOs, though in a number of cases supported by micronutrient supplementation for children and Commissioners' office. pregnant women. This would include a reversal of declining immunization coverage (polio excepted), which contributes to both disability and mortality IV. Policy Options for Improving the rates. Current efforts such as provision of simple aids Lives of People with Disabilities such as glasses or crutches also need to be expanded 51. The issues identified above suggest that it will ­ in partnership with the private sector ­ to prevent take a multi-faceted approach to improve the welfare of mild impairments becoming serious disabilities which disabled people and maximize their contribution to the compromise learning, work, and other activities of daily economic and social life of the communities in which life. The importance of simple interventions such as they reside. There is a clear need in several sectors to do cataract surgery and hearing devices will also increase a better job in "getting the basics right", i.e., minimizing with an ageing population. However, other efforts will the incidence of disability; identifying and certifying be needed beyond the health sector. Efforts to promote disabled people as early as possible; getting far more road safety are an important case, with the rapid disabled children into school and making it a worthwhile expansion in accident-related disability (estimated by experience for them; increasing efforts to raise awareness the Planning Commission to cost India around Rs. 55,000 among PWD and service providers of their rights; and crore annually at 2000 prices). While the draft National developing creative approaches to minimizing the social Road Safety Policy is one step, greater efforts at the state stigma of disability. As noted, it is neither possible nor level such as those being pioneered in Kerala are needed desirable for the public sector to "do it all", particularly to stem the major increase in traffic injuries and death. in an environment of major challenges in general The draft National Road Safety and Traffic Management service delivery. The specific areas of improvements are Bill soon expected to be introduced is another important highlighted below: effort to address the institutional and other challenges to improving road safety. Addressing Prevention and Treatment of 55. Improving quality of care for disabled people: Disability Key actions to be taken include: (i) better integrating 52. Improvements in access to care and outcomes for disability management in existing health delivery systems. PWD are needed in several areas, some of which are in Departments of social welfare, health and W&CD have the general public health and health delivery systems to work together and in tandem with early intervention and other specific to services for disabled people. through the education system, NGOs and communities. This would include joint disability training for local level 53. Improving identification and certification service providers and communities based on common of disability: A thorough review of the existing early mandates, combined with incentives and identification identification system for disability ­ with strong of influential champions. Improving training of PWD as coordination between the ICDS system, local health care health advocates and field facilitators is needed if they are providers (both public and private) and communities ­ to become active agents and not passive beneficiaries; (ii) is needed to improve early identification of disability. improved referral systems for the existing rehabilitation This effort needs to be accompanied by improved network, followed by increased funding and personnel outreach and possibly simpler procedures for disability (whose levels are currently at less than 10 percent of WHO certification, including raising awareness that such a standards for developing country rehabilitation services); system exists and exploring new approaches to disability (iii) a stronger distribution network for Government xxiii PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES programs of aids and appliances, including awareness committed to a progressive menu of options for raising of among PWD; (iv) improved centers and resources delivering education to children with special needs. devoted to disability management, including assessment, However, there are a range of challenges in turning rehabilitative services and medical intervention Indian policy into effective practice for a variety of reasons, and organizations have capacity to develop low cost India will not achieve its MDG goals without substantial technology for PWD, but need adequate funding and improvements in outcomes for disabled children. Some incentives, and finally, (iv) more aggressive efforts to of the elements in executing this agenda include: develop government and NGO partnerships in all areas of disability services will be needed to strengthen service 59. Improving access to education: Identifying delivery (in particular with respect to community-based childrens' impairments and learning capacities early and rehabilitation); and finally (v) continued efforts to ensure getting them into some form of education is a critical first that prevention of disabilities through immunization and step, which remains an incomplete agenda to date. It will other preventive measures is strengthened. be important to review the SSA systems for identifying children with disabilities entering the education system, 56. Addressing current and future provision and and explore their convergence with early identification information gaps. New legislation and its enforcement systems prior to school age. In most states, these are needed, particularly in the areas of mental health and systems are struggling to identify many children with road safety (including emergency and trauma care), both disabilities, and by operating parallel systems, may be of which are assuming increasing importance as causes overburdening anganwadi workers and others with of disability. The aging of the population and attendant reporting demands. Improved initial identification disability needs of the elderly will need to be addressed needs to be complemented with development of in the future. Finally, data and statistics on disability need simple systems for ongoing school-based assessment of to be more reliably and regularly collected, in particular emerging (and often easily reversible) disabilities. All new through strengthened NFHS and general health surveys, school construction should also be physically accessible which have neglected disability. and current efforts of retrofitting accelerated. 57. Given capacity constraints, improving the 60. Improving the quality of education services: health sector's response to disability may most GOI should require all states to develop a strategy for feasibly happen in two phases. The first phase could delivering education to children with special needs, in concentrate on accelerated response closest to the order that SSA and other central funds can be allocated community level. This would include an improved in a less mechanical manner. This strategy would assist in certification system, promotion of CBR (including improving the currently poor expenditure performance, awareness raising and stigma reduction elements), and and more importantly move the system towards a enhancing micronutrient supplementation (including genuinely child-centered allocation which can provide options for food fortification) and immunization. The parents and local authorities with more options and supply side interventions would need to include training greater accountability for resource use. Secondly, a key of general duty medical officers in disability certification, element of strategy execution must be making the special and of community volunteers. The second phase needs resource centre model operational. In many states, could focus on improved referral systems between this will require piloting of different models with good levels of the health system, including increased evaluation. Thirdly, current efforts to make the curriculum supply of therapists and support for establishment of accessible and adapted to the learning needs of children therapy centers in rural areas. It would also likely involve with disabilities need to be accelerated. This is recognized networking of hospitals and specialized centres, possibly in the National Curriculum Framework of 2005. For special with support form the private corporate sector. education curricula, greater efforts to assess the needs of children in activities of daily living and focus learning Improving the quality and access to materials on acquisition of these skills is required. Under education SSA, states such as Assam, AP, and TN have initiatives with 58. More than most sectors with regard to people "plus" curriculum and development of TLM which will be with disabilities, the education sector has been worth monitoring closely for lessons. Fourth, as part of this relatively progressive in policy terms, and has also strategy, the Government could also ensure that special xxiv education knowledge is imparted to all teachers in pre- implementing NGOs need like many areas of training service training. In this regard, it would be important to in India to drive curricula from the market, including review the performance of Rehabilitation Council of India diversifying the range of skills from traditional handicraft in its training provision and regulation role. activities more typical of "sheltered workshops". Awareness campaigns for public programs are also 61. Strengthening education institutions. This needed, as knowledge about available programs remains EXECUTIVE SUMMARY reform would first involve a more direct institutional very low. relationship with MHRD rather than MSJE. It would seem desirable to shift all special education under 64. Improving quality of private sector initiatives, MHRD, so that planning, financing and monitoring of and strengthening public-private partnerships. GoI the education of all children with special needs in the and the NGO and private sectors should jointly review public and aided systems can be done in a coherent the draft private sector incentives policy for people with manner. Ensuring VECs, CBR groups, womens' groups, disabilities developed by NCPEDP and FIICI to assess its and other community organizations are actively financial and administrative feasibility and adopt those engaged in the importance of educating children measures deemed workable into policy. There should with special needs, and familiarized with the benefits be dissemination by the Commissioners' offices of good for all children educationally and socially will also be practice in public and private sector enterprises in hiring important. IE exposure is now included in the training and promotion of inclusive workplaces for people with for community leaders, and states such as Bihar have disabilities. In particular, a review of the impact and viability included IE exposure in VEC training. Finally, as in the of NHFDC should be carried out. At a minimum, the case of health service delivery, overcoming weaknesses structure of NHFDC schemes needs to be revised so as to in public sector implementation by developing give SCAs, MFIs and banks better incentives to participate, public/private partnerships, learning from NGO sector and accountability mechanisms for channelling agencies innovations in education of children with special needs, improved. There should also be more experimentation and deepening public/NGO partnerships in those with group-based lending to disability SHGs, which has states where they are lagging will be important. There been shown in states like AP and TN (and in mainstream is a promising base, with around 530 NGOs involved in targeted credit programs) to be more effective than 26 states, but clearly scope for widening and deepening individual lending in expanding credit coverage. this engagement consistent with SSA's commitment to 65. Increasing outreach to marginalized groups PPP in IE. and regions. Both public and NGO training for disabled people needs to make greater efforts to include women Enhancing Employment Prospects with disabilities and a broader range of disabilities. 62. Improving employment outcomes for people They also need to develop simple processes for regular with disabilities starts with the education system and assessment of labor-market demand. Pilot interventions community attitudes. However, a range of more specific for rural outreach of both public and NGO active labor reforms and program reorientation is needed, including: programs are needed, and public funds from existing programs should be dedicated to this purpose. This will 63. Improving public sector employment practices. require much stronger engagement with communities First, the reservation for disabled workers needs to be and SHGs of disabled people. reviewed and reformed. If a quota approach is retained, it should be based on a share of all posts in public Providing Effective Social Protection agencies and discontinue the practice of "identified 66. Policies and programs should help improve posts" for disabled people. The Government should also awareness and targeting of safety net benefits to the review whether special employment exchanges should poor and develop innovative approaches to extend be integrated into the regular exchange network. In coverage of disability insurance. either event, there must be a systematic engagement with the private sector to assess labor market demand 67. Improving the safety net. A first step in improving and move away from the current focus on public sector the poor performance of safety net programs for disabled employment. TN and Gujarat provide promising models people is familiarizing implementing officials and PRI in this regard. Vocational Rehabilitation Centers and their representatives of the commitments under the PWD xxv PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES Act. Once such familiarization is done, the next step is Convention: First, there should be serious consideration for implementers to make efforts to raise awareness of given to broadening the categories of disabled people schemes and PWD entitlements. In parallel, efforts need to included in the PWD Act, which may in any event be be made in the public and non-governmental sectors to necessary in light of the new UN Convention to which mobilize PWD themselves, so that there is more bottom- India is a signatory. This may also require a de-linking of up demand on the delivery system. Formation and definitional inclusion of different groups with specific capacity building of PWD SHGs could be an important entitlements under the Act. While fiscal and other part of both strategies. Developing more focused efforts capacity issues suggest that not all disabled people may are also needed for specific programs, including: (i) for be supported through public interventions, this does SGSY, targeted efforts to mobilize formation of SHGs of not seem a good reason to exclude them from inclusion disabled people; (ii) for NREGS, adjustment of the national as PWD under the Act. Legislation and policy should guidelines to include disabled people and efforts to ensure that clear obligations for involvement of persons identify categories of works well suited to disabled people with disabilities themselves at all stages of policy and processes for ensuring their adequate inclusion; and development, implementation and monitoring. Second, (iii) for social pensions, review of states with poor coverage, MSJE and central and state Commissioners' offices should relaxing the eligibility criteria for disability social pensions, develop programs in collaboration with DPOs and NGOs and considering central funding of a base benefit as is for awareness raising of officials, service providers, done already under the National Old Age Pension Scheme. PRI representatives and communities on programs 68. Expanding disability insurance and coverage of for people with disabilities. A periodic monitoring of disability-related health services. In order to address awareness, with particular focus on lagging states and the demand that clearly exists for disability insurance, remote regions, should be put in place to assess impact. a low cost platform with standardized products and States should be strongly encouraged to develop uniform regulations is likely to be the only approach that their own disability policies which elaborate a credible can be scaled up at the national level. Such a platform has strategy for meeting their commitments under the PWD recently been proposed under the New Pension System and other acts. The example of Chhattisgarh offers a to deal with old age pensions for both the informal useful example of such a policy. Finally, there should be sector workers and civil servants. However, it will be a process for basic benchmarking of feasible policies and necessary to have far more coordinated efforts across programs for people with disabilities in the areas which different arms and levels of government to link various are currently subject to the economic capacity proviso. social insurance initiatives to such a platform. Equally, the 71. Institutional reforms would seem desirable in role of intermediary organizations such as MFIs, NGOs, several directions: First, the institutional framework at all and perhaps PRIs will be critical in improving program levels needs to have a substantially strengthened direct outreach and playing a role in contribution mobilization role for persons with disabilities themselves. Second, and claims processing if transactions costs are to be kept responsibility for specific programs for PWD should be manageable. More specifically, the recently introduced brought clearly under relevant line Ministries in some RSBY health insurance programme for BPL households cases, e.g., bringing all education policies under MHRD as should in time include a wider range of rehabilitation noted above. Third, GoI may like to consider overhauling related services relied upon by PWD. the current coordinating mechanism into a National Strengthening Disability Policies and Commission for PWD, which would have the status and Institutions convening power which is currently under-developed in 69. At this point, a focus on outcomes for people with the sector. It is important that such a body be a coordination disabilities would suggest that the priority should be on and oversight agency, and not be viewed as a separate "silo" institutional reform in order to improve implementation for disability. Such an initiative would only make sense if the capacity. Nonetheless, several policy reforms remain structural problems of coordination within and between important, and are outlined below. levels of government, and between the public and non- governmental sectors are addressed. It would also require 70. Policy Reforms. Disability policy reforms are a transition strategy if the current Commissioners' Offices needed in several areas some of which have become are to be merged into a future Commission, so that there more urgent as a result of India's ratification of the UN is not simply duplication of responsibilities. In this light, xxvi any move towards a Commission should not forestall the building bye-laws to comply with the 1998 guidelines urgent need to strengthen the capacity of Commissioners' should be encouraged to do so in the nearest future. These Offices to perform their current functions, in particular should allow for clear sanctions in case of failure to comply on grievance redressal, while avoiding "over-judicializing" with accessibility standards, and administrative clarity on the grievance mechanisms for PWD and thus reducing official accountability in cases of failure to comply. MoSJE their access. Fourth, the enforcement mechanisms for the in collaboration with Commissioner's offices, the Ministry EXECUTIVE SUMMARY Act need to be clarified and strengthened. A review of of Urban Development and Employment, and the states human resource and financial capacity of central and state should also work towards benchmarking minimum Commissioners' offices is also needed, and guidelines on national standards of accessibility to which authorities minimum staffing levels introduced. The national policy could be held accountable. This will be a necessity and legislation needs to reflect the growing role of PRIs under the new UN convention. Thirdly, public funds for and use it as an opportunity to extend institutional reach the welfare of disabled people should also be used to to the village level, and more importantly to increase support research on their access priorities, development the local channels for accountability of public and other of assistive devices for improving mobility of disabled disability service providers. NGOs should also be brought people, implementing cost-effective universal design, more actively into both policy and implementation, and analysis of the impacts and costs of failure to provide but with strengthened financial accountability and accessible environments. Finally, university and in-service monitoring of program outcomes. Finally, there needs to training courses for architects, engineers and planners be more direct engagement between both public and should include exposure to principles and practices of NGO sectors with PWD themselves and their families, with universal design and accessibility as a standard course SHGs being a logical vehicle. element. Financing for designated centres of excellence in this area should be made available. Changing Attitudes Strengthening Measurement and Surveys 72. Changing societal attitudes to people with 74. Improving measurement of disability is critical disabilities, even among people with disabilities for understanding the magnitude and scope of the themselves, presents many challenges. Changing disability issue in India, raising awareness of disability, attitudes to disability is likely to area where it is and helping address disability issues. This is a large particularly important for governments to work with agenda, but initial recommendations are: there is a need people with disabilities, NGO/DPOs, and communities to to harmonize definitions of disability categories across raise awareness about disabilities in order to help address NSS and census. In this process, there is also a need to a number of the demand side challenges in improving improve and harmonize the approaches across disability outcomes for disabled people. A second important step types within each survey (detailed recommendations where media, persons with disabilities, social activists, are in Chapter 1). Revising the NSS disability module for and NGOs are likely to have comparative advantage is the next dedicated round, in particular improving PWD putting the experience and success stories of persons household consumption information and other welfare with disabilities into the public arena. An important step indicators, and including other disabilities more explicitly in this regard is following the guidance offered by people in the survey would help improve measurement. The with disabilities in India on interactions with disabled pilots currently being undertaken by NSSO on new people, as outlined in Chapter 2. methods of assessing disability prevalence in household surveys are a welcome step forward in this regard and Improving accessibility should be acclerated and mainstreamed as soon as 73. Improvement in accessibility for disabled people possible. It will also be necessary to incorporate disability is a long-run agenda, but several recommendations questions into mainstream health, education and other emerge. Firstly, both national and sub-national policies surveys to an extent not done to date. This includes the on promoting access for people with disabilities should main schedules of NSS, so that more reliable comparisons be required to include consultation with disabled people between the disabled and non-disabled populations on in setting priorities, and in monitoring outcomes through critical indicators like educational attainment and living access audits and other channels. Secondly, states and/ standards can be made. or municipal authorities which have yet to amend their n xxvii PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES xxviii Source: Brotherhood, New Delhi xxix EXECUTIVE SUMMARY PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES xxx 1. This section addresses two overarching themes institutional, environmental and attitudinal which recur in the report. A brief discussion of each is discriminations as the real basis for disability. Thus it useful by way of framing the main body of the report. The is the society at large which disables the person with themes are (a) models of disability; and (b) a framework disabilities through discrimination, denial of rights, for thinking about public policy and disability. and creation of economic dependency. · the rights-based model of disability builds Models of Disability8 on the insights of the social model to promote 2. Virtually all the literature on disability outlines the creation of communities, which accept diversities shift in disability policy thinking from the charity and and differences, and have a non-discriminating medical models of disability towards social model of environment in terms of inclusion in all aspects of disability. The various models can be described briefly the life of society. as follows: 3. It took time to build consensus on a conceptual · the medical model of disability relies on a purely framework that reflected dimensions of disability medical definition of disability. It thus equates beyond the medical. The International Classification of the physical or mental impairment from a disease Impairments, Disability and Handicaps (ICIDH) from WHO or disorder with the disability that the person in 1980 was a breakthrough in this evolution. It recognized experiences. From a policy viewpoint, the person that personal, social and environmental factors are all at with disability is viewed as the "problem", and in play in "creating" disability. This acknowledged that not need of cure and treatment. In terms of services, only physical or mental impairments but the attitudes the general approach within this model is towards and institutions of society had significant impacts on the special institutions for people with disabilities, opportunities of PWD. e.g., special schools, sheltered workshops, special 4. The ICIDH-2 from 1997 represents a further step in transport, etc. The limitations of the pure medical this process. It defines disability as: model are evident, though it till underlies some current analysis such as that based on disability- "..an umbrella term covering three dimensions: (i) body adjusted life years (DALYs). structures and function; (ii) personal activities; and (iii) participation in society. These dimensions of health- · thecharity model of disability also views the person related experience are termed "impairments of function with disabilities as the problem and dependent on and impairments of structure", "activities" [i.e. nature and the sympathy of others to provide assistance in a extent of individual functioning due to impairments], charity or welfare mode. and "participation" [the nature and extent of a person's involvement with life situations] respectively". · thesocial model of disability "places the emphasis on promoting social change that empowers and 5. While the language of ICIDH-2 is dense, the intuition incorporates the experiences of PWD, asking society is simple. Limitations on PWD participation in the life of itself to adapt".9 The social model emphasizes their society are created by the interaction of general 8 This section draws from Metts (2000), and inputs from Alana Officer. 9 See DFID (1997). 1 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES environmental factors (e.g., the built environment; something that only happens to a minority of humanity", societal attitudes), individual-specific factors (e.g., aiming to mainstream the experience of disability. gender, age or education), and the impairment(s) that The ICF has developed more detailed classifications of the individual has. The ICIDH-2 is sometimes termed functioning with respect to products and technology, a biopsychosocial model of disability. The model is natural and man-made environments, support and presented in diagrammatic form in Figure 4. relationships, attitudes, and services, systems and policies.10 FIGURE 4: THE ICIDH-2 FRAMEWORK FOR UNDERSTANDING DISABILITY 8. In broad terms, this report adopts the ICIDH-2 Health Condition approach to disability, though the practical differences (disorder/disease) to the ICF approach are not significant. The combination of medically-based and socially-determined definitions of disability that it offers seems particularly appropriate to a poor developing country. It is also useful in terms of Impairment Activity Participation public policy, where determinations of disability need to be made (e.g., for access to benefits or services), which have simple decision-making rules consistent with Contextual Factors A. Environmental limited institutional capacity, and thus avoid high levels B. Personal of observation and/or discretion. C. Institutional Source: WHO. Public Policy and Disability 6. Metts provides a useful explication of the ICIDH-2 9. Disability has public policy implications in several approach, noting that "people may...: main areas: · preventionofdisability; · haveimpairmentswithouthavingactivitylimitations (e.g., disfigurement but no activity limitation); · risk management and amelioration by either monetary or in-kind means (when disability can not · have activity limitations without evident be prevented); impairments (e.g., experience poor performance in activities due to disease); · theinteractionofpovertyanddisabilityinacontext of widespread poverty and vulnerability; · have limited participation without impairments or · the interaction of disability with delivery of public activity limitations (e.g., discrimination due to past services such as education or health in a context mental illness or HIV); and where the general systems of service delivery face · experience a degree of influence in the reverse many challenges; and direction (e.g., experience muscular atrophy · the role of public policy in areas like employment due to inactivity or loss of social skills due to and attitudes where the market or social institutions institutionalization)." play a dominant role. 7. The ICIDH-2 was followed by the International 10. Much of this report focuses on the question Classification of Functioning (ICF), which skips the "Should ­ and if so, how should ­ public policy intervene linkage between health conditions and functioning, and in the area of disability?". The question must be classifies functioning directly, using the same domains addressed in the context of constrained public resources, as ICIDH-2 (body functions, activities and participation). which presents hard questions for India in terms of It was adopted by the World Health Assembly in 2001. focusing marginal resources on the most effective As WHO indicates, "It acknowledges that every human channels for promoting opportunities for people with being can experience a decrement in health and thereby disabilities. It must also be asked with some sense of experience some degree of disability. Disability is not how current market and community-based or household 10 See WHO website, http://www.who.int/classification/icf/en. 2 arrangements succeed or fail in creating opportunities from the UK indicate that around three quarters of the for PWD to participate fully in society. differences in poverty rates between PWD households INTRODUCTION AND FRAMEWORK and non-PWD households can be accounted for by the 11. Standard analyses would look to justify public conversion handicap and only around one quarter from intervention in the area of disability on the basis the earnings handicap.12 of market failures ­ either those that interfere with efficiency of the economy or those that are inspired by 13. The above insight is important to keep in mind a desire for equity or social justice. That is, it may be that in assessing the empirical evidence in this report on the some problems associated with disability cannot be relative position of PWD. Several elements of the socio- solved by people acting individually via ordinary market economic profile are only able to capture the earnings transactions. A somewhat more sophisticated analysis handicap or equivalent in terms of access to services or would balance the identification of such problems with other indicators. It is important to keep in mind that explicit consideration of constraints on governments' the conversion handicap makes the direct deficits that ability to address them. For example, some things such PWD typically face (e.g., in income of access to services) as comprehensive disability insurance are not available very much lower bound estimates of the total welfare on the market for systemic reasons. However, they loss that disability imposes on them. may be just as difficult to provide publicly for the same reasons. The following paragraphs discuss characteristics Disability and risk management peculiar to disability that influence the ability of both 14. A core challenge that disability poses for public private transactions and public policy to ameliorate the policy is mitigation of risk, both the risk of being born problems faced by PWD. They contrast both market and with an impairment and the risk of acquiring one later public action with social action ­ the informal support in life. It is problematic since both private markets and systems that people rely on ­ and ask when is there public provision are subject to severe constraints. Ideally, something public policy can do to strengthen market insurance would make it possible for someone to buy a and/or social action outcomes for PWD, or when it might policy that would "make good" any losses ­ monetary inadvertently weaken these systems. or psychic ­ caused by a chance event that results in impairment. Not only would one be able to buy health Analyzing the well-being of people with insurance in the case of an injury (to pay for medical care disabilities costs), but also disability insurance to replace the loss of 12. Amartya Sen has persuasively pointed to the earnings the injury might lead to. Similarly, it would be shortcomings of the dominant western theories of justice ideal if parents could buy an insurance policy that would in analyzing the well-being of PWD relative to others in pay compensation for any congenital impairments in society.11 An important distinction that he makes is their new-born. For various reasons, both markets and between the "earnings handicap" which PWD typically governments are unable to provide such comprehensive face and the "conversion handicap". While noting that coverage. PWD are typically poorer than average throughout the world (the earnings handicap), he also notes that they 15. Mitigating the risk of disability is subject to two are doubly deprived in that they have greater difficulty major challenges. The first is observability. Correctly in converting income into well-being or good living (the observing the existence of a disabling impairment conversion handicap). For example, a PWD may need presents many challenges for both public and private to spend money to achieve the mobility that non-PWD systems. The situation is complicated by the fact that achieve without cost (e.g., due to need for prosthesis or many impairments occur on a continuous spectrum additional expenditures on transport). The conversion (e.g., percentage loss in eyesight or reduction in IQ). This handicap which PWD face thus makes a given level of raises the question of at what point an impairment can be income yield a lower level of well-being relative to the considered a disability, justifying public intervention or non-disabled population. Calculations of the relative private insurance payout. For some kinds of impairments, importance of the earnings and conversion handicaps there may be a clear threshold effect, but for many there 11 Sen (2004) outlines the failures of utilitarianism, the Rawlsian theory of justice and the income/wealth-approach underlying welfare economics to accommodate disability, concluding that "none of the dominant theories of ethics and justice can really pay serious attention to the issue of fairness to the disabled". 12 Kuklys, cited in Sen, op.cit. 3 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES may not. If there is a slow decline in earning capacity (or 18. When both "arms-length" relationships (market ability to enjoy life as in depression) as an impairment and government) fail, then people as groups may be worsens, it takes considerable knowledge, time or able to take care of some types of market failures. In resources to be able to tell at what point a person should the case of disability, local communities may provide a become eligible for a public program or insurance payout. service that is too difficult or expensive for the market It is this need for substantial discretion on the part of or government to provide (e.g., this may explain some of an official or insurance agent that makes verification of the success of community-based rehabilitation for PWD disability prone to misuse either by the client or by the in India and elsewhere). They can be more precise in their officer who can demand payment for a favorable decision. appraisal of the extent and consequences of a person's impairment. Care of a PWD will not be over-provided by 16. The second challenge in disability is that of family or community, and is not prone to exploitation valuation. Once it is successfully observed that a in the same way as a public program. The "insurance" person has a given level of impairment, there are major in this case is implicit in the expectations of reciprocity challenges in defining what would "make good" the well- among family members and of the community at large being of the person. Even if in principle one could define ­ both of which are very different in different cultural the appropriate average compensation for a given type environments. and level of impairment, it would be almost impossible to prove how much ­ in the individual's specific context 19. If effective household and/or community support ­- the impairment has reduced well-being. Some is dependent a sense of reciprocity with the PWD, the elements of the estimation are possible (e.g,. direct costs most vulnerable PWD are those who do not have a of medical treatment already undertaken or income lost). sufficient support system within their community. Others are possible to define but it is much more difficult This may be either because their connections to those to cost them (e.g., future lifetime medical costs or loss of with resources are few or weak (which may be driven by earnings). Still others are not possible in practice to value reasons such as social stigma, caste, age or gender), or (e.g., loss of pleasure from life due to severe depression, because the people they can depend on (typically their or sense of isolation due to mobility impairment). family) are very poor themselves. There can thus be two weaknesses of social action ­ one that is driven by the Social services and people with disabilities absence or thinness of networks of reciprocity, and one 17. There are also likely to be challenges for both the that is driven by the limited capacity of social networks market and governments in direct service provision to to provide support. There are reasons to expect that the PWD, at least where service provision is disability-specific lives of PWD are characterized by both these weaknesses and not simply a factor in a PWD accessing general more than average. Empirically, a typical feature of services. This is driven by the characteristics of the group disability in all countries appears to be more limited of disabled people. First, while by no means negligible, social networks (in particular due to stigma) and higher they are a relatively small share of the population. With household poverty. The effectiveness of social action respect to service provision, the (still smaller) size of in both promoting opportunities and providing basic particular sub-groups of PWD also matters, e.g., where social protection for PWD is thus likely to be unusually disability-specific aids and appliances are needed. constrained. As a result, PWD are likely to be a dispersed group for providing services. Second, PWD and the households 20. What is the role of government in the context in which they live are poorer than average, so that their of community-provided care (either by informal appeal for the commercial sector is relatively limited community institutions or the family? The direction of (though may be higher for some segments of the market help may be two-way. Firstly, governments may choose such as NGOs). Third, even where supply-side issues to help the disabled for the sake of alleviating poverty ­ can be overcome (e.g., cities), there may be significant not only for the PWD but for the entire support system if demand side issues. These could include lack of interest care-takers are themselves poor. Secondly, government in services for disabled people (e.g., lower demand for programs for PWD may be able to use the greater and schooling relative to other children), greater problems in more detailed information available in the community physical access to goods and services for PWD, or simply in the identification of beneficiaries and, possibly, the the poverty constraints already noted. extent of entitlement. 4 21. In light of the challenges that face market, in rural settings among groups where social cohesion government and social action in the field of disability, is strong. The approach also needs to take account of INTRODUCTION AND FRAMEWORK what combination of interventions seem sensible for binding commitments of the state to PWD ­ e.g., where trying to address different forms of failure? There is not legal rights have been guaranteed to PWD. Overall, a is simple answer to this question. Different combinations clear message of the report is that there will remain a appear more appropriate for different aspects of PWD critical role for the public sector in the disability field lives (e.g., employment versus education), for PWD in for a variety of reasons, a role that the experience of different settings (e.g., urban/rural), and also for people countries at all levels of income suggests is never able to with differing types of degrees of disability. For example, be bridged fully by the actions of non-state actors. The government and market action may be easier in urban rest of the report deals with the issues outlined above in areas with concentrated populations of disabled people, turn. while collective action may be more readily mobilized n 5 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES 6 Photography: Avinash Pasricha 7 EXECUTIVE SUMMARY PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES 8 1.1. This chapter presents a socio-economic profile TABLE 1.1: DISABILITY RATES FROM CENSUS AND SURVEY of persons with disabilities in India. It is based primarily SOURCES, EARLY 2000s. on data from the 47th and 58th NSS rounds and the 2001 PWD as share of... Census NSS 58th census, but is supplemented by analysis from a dedicated All individuals 2.13 1.8 survey in rural UP and TN carried out in 2005. All urban individuals NA 1.50 All urban households NA 6.1 A. Socio-economic profile of PWD All rural individuals NA 1.85 All rural households NA 8.4 Disability Prevalence All males 2.37 2.12 All females 1.87 1.67 1.2. The starting point is an estimation of the total Sources: Census 2001 and NSS 2002. number of PWD in India. On this point, the two major official sources of data on disability differ, with the political mileage in policies to promote inclusion of census estimate around 18 percent higher than disabled people than is commonly thought. NSS estimates. The 2001 census found 21.91 million PWD (2.13 percent of the population), while the 2002 1.4. Looking at the prevalence of specific disability NSS round's disability estimate is 1.8 percent of the types, the divergence between census and NSS population, which would come to around 18.5 million estimates are very pronounced for locomotor and (Table 1.1). The difference in aggregate estimates is in visual disabilities (see Figure 1.1). While they also differ part explainable on the basis of different definitions used significantly for both hearing and speech disabilities, in the NSS and census for disabilities (see Annex 1). Both the inclusion in NSS of multiple disabilities is a factor, sources find disability rates to be higher among men and as speech and hearing disabilities may be more likely higher in rural than urban areas. In fact, the 58 percent to combine. The locomotor and visual disability share of males in total PWD estimates is worthy of further differences are however much more sharp and can not exploration. be explained by this. The major driver of the differences appears to be definitional, with the census defining 1.3. Just as importantly in terms both of the impact FIGURE 1.1: DISABILITY SHARES BY TYPE, CENSUS AND NSS, of disability in the population and in terms of political EARLY 2000s (% OF DISABLED PEOPLE) economy and voice among people with disabilities, is the share of households estimated to have a member with a % of PWD population Multiple disability. The NSS for 2002 estimates that 8.4 percent of Locomotor rural households and 6.1 percent of urban households had a member with a disability. These higher figures are Speech important for several reasons. Firstly, the direct impacts Hearing of a disabled household member will clearly go beyond Visual the individual with the impairment (as, for example, Mental the chapter in impacts on non-disabled family member 0 10 20 30 40 50 60 work participation in Chapter 5 indicates). Secondly, 7.8 Census rates NSS rates percent of households nationally represents a significant Source: NSS, 58th round and census, 2001. "vote bank" which suggests that there may be more 9 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES visual disabilities more broadly and vice versa for on dedicated surveys.16 A GoI/WHO survey in the movement disabilities.13 1980s estimated visual disabilities at 1.5 percent of the population, a share that may have grown based Census and NSS sources give a divergent picture of the on a national estimate of blind persons in 2000 of composition of disability 18.7 million, of which 9.5 million were cataract- 1.5. The aggregate number of PWD in India is related and 3 million refractive error-related. 17 keenly disputed, with alternative estimates invariably Naturally, different studies are subject to differences higher than official ones.14 Even the 11th Plan in approach and definition, but careful work by acknowledges the likelihood of official disability rates well-trained interviewers using better instruments being significant under-estimates, noting that "It can and with reasonable definitions of disability have be reasonably assumed that persons with disabilities produced substantially higher estimates of disability constitute anywhere between 5 to 6 percent of our total prevalence than official statistics. The higher population".15 Higher estimates are based on several estimates are also more consistent with comparable arguments: international estimates of disability from WHO and individual countries. · Exclusion of disability categories in both NSS and census. The reliance on PWD Act categories is a · It is clear from primary field research from this limiting factor. There are numerous examples of report (and previous work) that significant excluded disability categories, including autism, categories of people who are functionally disabled thalassemia, haemophilia, and many learning will not typically be identified by households as disabilities. GoI is looking at including a broader being disabled. The primary example of this is elderly range of disabilities in planned revisions of the people with significant functional impairments who PWD Act, which would also be consistent with the were not disabled before they became old. In field approach of the UN Convention which India has work, the standard answer on probing was that even ratified. seriously functionally impaired elderly people were · The method of questioning on disability in both "just old" or "like many other old people" rather than census and NSS, which relies on a traditional disabled. The main exception was elderly disabled "diagnostic" identification of disability by people who were disabled before becoming old. untrained interviewers, which recent work coming Given the relatively higher rates of functional out of a UN expert group suggests is the method disability among elderly populations worldwide, which yields the lowest disability estimates. Box such cultural factors are likely to be a significant 1.1 notes the various methods and issues involved. source of under-estimation of disability prevalence. Simply asking whether or not people have a disability · The social stigma attached to disability is also (and what type) has been found worldwide to yield likely to contribute to under-estimation.18 Chapter lower bound estimates of prevalence, with a strong 2 provides insights on the strong stigma often bias towards more serious disabilities. attached to disability in India. Stigma ­ as in many · Disability-specific surveys which have found often countries ­ seems to be particularly pronounced substantially higher rates of disability in cases for mental illness and mental retardation. Stigma where interviewers have been far better trained on is a factor in many countries, but Indian notions of detection and probing. Examples include: a meta- karma seem likely to make the problem of lack of analysis of mental illness incidence gives an estimated identification by households more pronounced in prevalence of 5.8 percent of the population based India. 13 Bhanushali (2005). GoI has recognized a number of these issues, as summarized in the 2006 Technical Advisory Committee report on Disability Statistics. 14 See Puri (2005) prepared as background material for this report, which provides a comprehensive summary of micro-studies on prevalence of different forms of disability in India. 15 11th Five Year Plan, Planning Commisison, GoI. Section on Empowering Persons with Disabilities. 16 Khandelwal et al. (2004). 17 Dandona et al (2001). If there is no change in the current trend of blindness, the study estimates that the number of blind persons in India would increase to 24.1 million in 2010, and to 31.6 million in 2020. 18 See Harriss-White (1995). 10 1.6. Due to the above and other factors, official TABLE 1.2: DISABILITY PREVALENCE RATES BY COUNTRY AND PROFILE OF PERSONS WITH DISABILITIES disability estimates in India can therefore be DISABILITY QUESTION METHOD, VARIOUS YEARS considered a more reliable estimate of serious Country and question type Disability prevalence disabilities, particularly for mental retardation and rate (% of population) CHAPTER 1: SOCIO-ECONOMIC mental illness. A more inclusive definition would appear Do you have a disability ? Yes/No to include around80-90 million people. It is stressed that Nigeria 0.5 the total figure of over 90 million (or around 8 percent Jordan 1.2 of the population) is not intended to be "the" estimate Philippines 1.3 of disability prevalence, but simply to indicate that Turkey 1.4 reasonable alternative definitions and reliable sources Mauritania 1.5 find a possible prevalence rate of disability which is Ethiopia 3.8 considerably higher than the official NSS and census Jamaica 6.3 estimates. It also points to be great importance of mental List of Conditions illness in overall prevalence, an area of particular difficulty in measurement. This points to the complex issues of Colombia 1.8 both definitions for measurement and of conducting Mexico 1.8 interviews with non-specialist interviewers. Palestine 1.8 Chile 2.2 1.7. International evidence from developing and Uganda 3.5 developed countries provides useful insights for Hungary 5.7 interpreting both official disability estimates for India Activity-based questions and those from reliable alternative sources. Several Poland 10.0 pertinent findings on international experience in estimating disability prevalence are: United Kingdom 12.2 Brazil 14.5 · How disability questions are asked matters, Canada 18.5 and India's methods of asking in both NSS and United States 19.4 census tend to generate the lowest disability Source: Mont (2007) estimates worldwide. This can be seen in Table 1.2, where prevalence rates are seen to vary sharply · Official disability prevalence rates tend to rise with according to how the disability questions are asked. country income levels. This is a product of various Interestingly, many countries find a prevalence factors, but would appear to be less about the "true" range of 1-3 percent using India's current method rates of disability (though older age structures are a of asking disability questions, while activity-based factor) as other factors. These include more inclusive questioning yields higher rates. More detail on the definitions of disability, better measurement and different approaches is provided in Box 1.1. identification, social security systems which provide · It is not unusual for different official surveys from incentives to self-declare as disabled etc.19 Official the same country to yield different estimates rates by region are presented in Figure 1.2, and of disability, even where interviewer capacity demonstrate the point that disability does not "go is high. An extreme case is provided by Canada, away" as countries get richer, but undergoes both which has estimates from various official sources a growth in rates and in the structure of conditions ranging from 13.7 to 31.3 percent. In the region, contributing to disability. there are also significant variations across source · Despite the general pattern of rising disability rates in disability estimates, e.g., in Sri Lanka, the census- with higher country income, developing countries based estimate is 1.6 percent, while a UNICEF survey which have implemented more advanced survey estimated around 4 percent prevalence. and census-based measurement have found There may also be strong political incentives to increase disability rolls, e.g., prior to elections, when political incentives drive recategorizing of "unemployed" people to "disabled". 19 Another example is during periods of economic restructuring (as for example, in transition countries during the 1990s) when putting laid-off older workers onto disability benefits may provide more sustained post-layoff social protection and dilute public perceptions of the unemployment impacts of enterprise restructuring. 11 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES notably higher prevalence rates of 10-15 percent of FIGURE 1.2: OFFICIAL DISABILITY RATES BY REGION, the population. Three notable examples are Brazil, EARLY 2000s Zambia and Nicaragua, which also demonstrate that 10.00 new forms of measurement can be achieved even 8.00 in very low income and capacity settings. Brazil for 6.00 example moved from around a 1 percent prevalence 4.00 rate to 14.5 percent with a change in the method of asking questions in its census. Using other household 2.00 surveys with improved methodology, Nicaragua's 0.00 AFR SA EAP MNA ECA LAC OECD High rate is just over 10 percent, while Zambia has a rate Income of around 13 percent. The example of the change in Average disability rate pop. weighted avg. disability rate questions for Brazil is given in Annex 2. years lost to disability between 1990s and 2020. This is 1.8. Such methods have recently been piloted in India presented below for India, China and other Asia/Pacific by WHO/UNESCAP and lead to notably higher disability countries.22 All are in the midst of a disability transition, prevalence rates (of over 20 percent), pointing to the but the pace of that transition in India is predicted to be importance of not having a single prevalence rate for most rapid. Between 1990 and 2020, there is predicted multiple purposes. While the surveys were not sampled to be a halving of disability due to communicable to be nationally representative, they point to both the diseases, a doubling of disability years due to injuries/ very different results that are obtained using different accidents, and a more than 40 percent increase in the approach to investigation of disability.20 share of disability years due to non-communicable 1.9. The above estimates rely on national census and diseases (e.g., cardiovascular and stroke). An additional survey work. An alternative approach to estimating point of note is that around half the disability from non- disability prevalence and trends by cause is to estimate communicable disease for South Asia is estimated to be the total years lost due to disability using the DALY due to neuropsychiatric disorders (mainly mental illness methodology. This method is open to a number of and mental retardation), suggesting that 30 percent of criticisms,21 but is nonetheless of interest in comparative total years lost to disability in India by 2020 could be due to terms. An interesting insight the method provides is these causes. This is of interest in that it appears to confirm comparative estimates of the shift in the main drivers of that mental illness and retardation are significantly under- BOX 1.1: DIFFERENT APPROACHES TO ASKING ABOUT DISABILITY IN CENSUS AND SURVEYS The UN Statistics Division has formed the Washington City Group on Disability Statistics, which is focused on measurement of disability in national censuses and surveys (website is http://www.cdc.gov/ nchs/citygroup.htm). There are broadly four methods of trying to identify disability in surveys, which are: Diagnostic: An example of this approach would be "Is anyone in house deaf ?". This method tends to generate the lowest prevalence estimates among those now available and is the one used in India for both NSS and census. Activities of daily living (ADL): This method relies on a functional approach based on common activities of individuals. An example of this approach would be "Do you have trouble bathing or dressing yourself ?". This yields higher prevalence estimates than the diagnostic approach, but can be very culturally sensitive for purposes of cross-country comparison (e.g., putting on a sari is a more demanding task than putting on a skirt). Instrumental ADL (IADL): This asks about more complex functionings, e.g., "Do you have trouble maintaining the household ?". This tends to yield the highest rates of disability, but can more often include those with chronic illness who may not otherwise be classified as disabled. Participatory/social roles ­ This method is underpinned by a social model of disability. An example would be "Do you have a mental or physical impairment that limits the type/amount of work you can do ?". This would tend to yield prevalence estimates between diagnostic and ADL/ IADL approaches. Source: UN Washington City Group 20 See Mont, op.cit, for detailed results, including comparative information from 4 other developing countries. 21 See Mont (2006) for a persuasive criticism of the DALY approach from a disability perspective. 22 Murray and Lopez (1997). 12 The share of disability impact due to communicable TABLE 1.3: PWD AND GENERAL POPULATION SOCIAL PROFILE OF PERSONS WITH DISABILITIES causes is falling sharply in India and much of Asia, CHARACTERISTICS, 2002 with the share due to non-communicable diseases and Household characteristic General HHs with injuries rising population PWD CHAPTER 1: SOCIO-ECONOMIC ST 8.1% 6.9% FIGURE 1.3: DISABILITY TRANSITION IN VARIOUS ASIAN COUNTRIES, 1990-2020 SC 20.2% 21.1% OBC 39.9% 42.0% 90 % of disability years lost 80 Female headed 7.7% 7.2% 70 Urban 26.1% 21.6% 60 50 Land owned (hectares) 0.83 0.95 40 30 HH head illiterate or 65.8% 66.7% 20 primary/less education 10 0 HH head with secondary/ 20.3% 17.2% Comm Non- Injury Injury higher education Comm Non- 1990 Comm 1990 2020 2020 Comm 1990 2020 Household size 7.23 6.05 India China Other Asia/Paci c Age of HH head 45.98 years 50.04 years Source: Murray and Lopez, 1997. Source: NSS, 58th round, Bank staff estimates. estimated in official statistics (as the national research · one notable difference between the characteristics referred to above also strongly suggests). presented is the urban share of the PWD and general household populations, with the urban 1.10. Numbers from a variety of reliable sources suggest share of the general population over 20 percent that the real prevalence of disability in India could be higher than for the PWD household population, easily around 55 million people, and perhaps as high as pointing to issues with access to health care, the 90 million if more inclusive definitions of both mental nature of work, and other factors. In terms of the illness and mental retardation in particular were used. relative poverty rates of PWD households, this is Such estimates are very consistent with the working likely to have significant implications, as national assumptions of the 11th Five Year Plan. The focus of estimates from 1999-00 find rural poverty rates more this report is not on precise prevalence estimates of than double those in urban areas.24 disability in India. However, the large range in estimates both of the number of disabled people and what is the · the share of illiterate or basic education HH heads composition of their impairments points to the need for in PWD households is only marginally higher than improvements in public data collection efforts. for the general population. However, the share of heads in PWD households with secondary or higher Socio-economic characteristics of education is around 15 percent lower than the households with disabled members general population. These rates are of interest in terms of poverty correlates of PWD households, and 1.11. Despite the above concerns, it is useful to examine would suggest slightly higher poverty rates among the socio-economic profile of PWD in India that emerges PWD households. from NSS and census. With respect to education, health and employment, more detail is provided in Chapters · a finding that runs contrary to the above findings 3-5. The socio-economic characteristics of households of higher of poverty in several indicators is that with PWD and others can be done using the 58th and 47th PWD households have higher than average land rounds of NSS. The PWD schedule and main schedule are holdings. This is not simply an artifact of the higher not the same sample, but are representative of the PWD rural population share among PWD households, and general populations respectively. Key points are in as the rural-only sub-samples indicate around 10 Table 1.3.23 percent larger average land holding than for general 23 Unfortunately, direct comparison of per capita consumption is not possible between PWD and non-PWD households from NSS, as the disability module has a different consumption aggregate. 24 See Deaton and Dreze (2005). 13 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES In rural UP and TN, disability is clearly associated with lower economic status FIGURE 1.5: RELATIVE HH SHARE WITH PWD BY FIGURE 1.4: RELATIVE SHARE OF PWD AND SEVERE PWD BY CONSUMPTION AND ASSET QUINTILES (COMMUNITY ASSET QUINTILE, UP AND TN, 2005 IDENTIFICATION), UP AND TN, 2005 1.4 1.4 Incidence relative to average 1.2 1.2 Presence of PWD in HH 1 1.0 relative to average 0.8 PWD 0.8 Consumptio PWD severe Assets 0.6 0.6 0.4 0.4 0.2 0.2 0 0.0 Q1 Q2 Q3 Q4 Q5 Q1 Q2 Q3 Q4 Q5 Source: UP and TN village survey, 2005, Bank staff estimates. Q1=poorest and Q5 richest quintiles. population. Another is that the differences by SC/ poverty correlation when the ADL measure was used ST status are not dramatic between PWD and non- to identify PWDs, while the link between poverty and PWD households, with PWD having only a slightly disability is quite pronounced using the consumption higher aggregate share of SC/ST/OBC. The share of measure when community identification of PWDs is SC/ST households among PWD is of significance in used. This is an interesting finding for research on terms of likely poverty rates, both have higher than disability survey methodology. average poverty rates. 25 · It is also important to recall Sen's "conversion 1.12. The rural UP and TN survey provides insights into handicap" for disabled people, i.e., that equivalent a wider range of comparable welfare measures between levels of income are less easily converted into PWD and non-PWD households. The results are presented individual welfare by PWD. Taking account of this in Figures 1.3 and 1.4 below. Figure 1.3 presents the factor would further widen the gap between PWD incidence of a disabled or severely disabled household and non-PWD households. member by quintile, using an asset index to rank household welfare. The incidence of disability was estimated based 1.13. There are several other non-income indicators at on an ADL approach. Figure 1.4 presents findings again by the household level from the village survey which are quintile for two measures ­ first a per capita consumption of interest, and most of which also point in the direction ranking and secondly an asset ranking. The difference of households with PWD being worse off than average. is that presence of disability is in this figure based on Those which were statistically significant are presented community identification of households with a disabled in Table 1.4. While the differences are not in most cases member. A few points emerge: dramatic, several points are worth noting: · There is a clear decline in the proportion of people · the key welfare indicator of three meals a day with disabilities of all severity (using an ADL year-round shows a clear difference, with PWD measure) as the wealth of households rises. There households almost one quarter less likely to report are more PWD in poorer households in rural UP and a positive answer; TN. · A similar pattern can be seen where the measure of · therearealsosignificantlylowerratesofownership disability is community identification of whether of key assets for PWD households; and or not a household has a disabled member. · interestingly, the share of SC households with · A further finding of interest is that consumption disabled members was substantially lower than the measure captured only a very weak disability and households without disabilities. 25 See Sundaram and Tendulkar, in Deaton and Kozel (2005) on SC/ST poverty rates. 14 TABLE 1.4: NON-INCOME INDICATORS FOR HOUSEHOLDS average land holding. What is harder to interpret are the PROFILE OF PERSONS WITH DISABILITIES WITH AND WITHOUT PWD, UP AND TN, 2005 differences in relative situation of other disability types Indicator HH HH with HH with across the expenditure and land measures. Equally, the without PWD severe relatively good position of households with a person CHAPTER 1: SOCIO-ECONOMIC PWD PWD with mental disability is unexpected. Three meals per 47.9% 36.7%** 37.4%** day year round Socio-economic profile of people with Pucca floor 39.9% 34.1%** 34.9% disabilities Good light source 48.3% 42.2%** 42.8% 1.15. The above characteristics relate to households Good toilet 6.9% 4.1%** 4.0%* within which PWD live. Of even greater importance is the Making some 35.9% 32.7% 30.1%** socio-economic profile of PWD themselves. This is dealt savings with in greater detail in chapters on health, education Scooter/motorbike 16.9% 12.5%** 12.1%** and employment. However, some details are presented SC household 28.2% 20.4%** 20.9%* in the following section, above and beyond the incidence Source: UP and TN village survey, 2005, Bank staff estimates. ** = significant at 5%; data already discussed. * = significant at 10%. 1.16. An important issue for policy and planning purposes is age at onset of disability. In all countries, 1.14. A final point which the NSS allows to explore is this will shift over time, generally towards later onset the relative welfare among households with a disabled as maternal-child health systems improve, infectious member by disability type. This is not subject to the diseases are superseded by age and lifestyle related same problems of a different consumption measure conditions, and the share of accidents in total disability as with comparisons to households without a PWD. causes shifts. For India, 2002 data on age at onset of Results for both per capita household consumption disability are in Figure 1.6, and show an expected and land holdings are presented in Figure 1.5. Overall, double peak, with the highest rate of disability households with a hearing disabled member are the occurring at or shortly after birth, though with a second relatively best off among households with disabled noticeable hump in onset from the 50s to early 60s. members whether measured by consumption or land. Just as important is that the disability-specific patterns Equally, households with a visually disabled member of onset vary considerably. This is discussed in detail seem to be the worst off across both measures, around in Chapter 3, but show the critical importance of early 12 percent lower PC expenditure and 12 percent smaller childhood identification of disability and intervention. FIGURE 1.6: RELATIVE PER CAPITA HH CONSUMPTION AND LAND HOLDINGS BY DISABILITY TYPE, 2002 (HEARING DISABLED AS REFERENCE) 1.02 PCE and land relative to hearing disabled HH 1 0.98 0.96 0.94 0.92 0.9 0.88 0.86 0.84 0.82 0.8 0.78 0.76 Mental Visual Hearing Speech Locomotor Multiple Source: NSS, 58th round, Bank staff estimates. PCE Land 15 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES FIGURE 1.7: KERNEL DENSITY OF AGE AT ONSET OF ALL with higher levels of educational attainment. Across all DISABILITY - 2002 PWD, illiteracy is 52 percent, versus only 35 percent in the general population. For specific disability categories, the .03 illiteracy rates are higher again: with almost two thirds of both speech and mentally disabled people being .02 Density illiterate. Conversely, those with locomotor disabilities have 44 percent illiteracy rate, significantly lower than .01 the PWD average but still one quarter higher than the general population rate.26 0 0 20 40 60 80 100 1.19. As with the general population, there are strong Age at onset Source: Das (2005), based on NSS 58th Round. gender differences in educational attainment among PWD, with PWD female illiteracy rates on average 64 1.17. A second issue with obvious implications for percent (against a male PWD average of 43 percent), policy is how severe are the disabilities of people with and as high as 73 percent for the visually disabled. There disabilities in India? Table 1.5 presents the NSS indicator, are also strong locational differences as one would expect, which is extent of reliance on aids and appliances and with the total PWD illiteracy rate for rural areas as high as other people for self-care. The key point is that the bulk 57 percent, against a rate of 37 percent in urban areas. of PWD are only mildly/moderately impaired by the NSS 1.20. While Figure 1.7 is important, of immediate measure. In addition, a further sixth of PWD are capable relevance is school attendance of the current batch of self-care with the necessary aids and appliances. of children in general education, as this is a group for This is an important point to stress, and has significant whom improvements could occur in time to affect their implications for education policy and implications for lifetime attainment. Nationally representative figures the employment capacities of PWD. from survey conducted in 2005 are presented in Figure 1.8, which show the proportion of children out of school TABLE 1.5: REPORTED EXTENT OF DISABILITY AMONG PWD, 2002 along various social indicators, including disability.27 Extent of disability Share of all PWD The share of disabled children who are out of school is dramatically higher than other major social categories, Can not take care of self even with 13.6% aid-appliance with the average out-of-school rate for CWD five and a half times the rate for all children, and around Can take care of self only with aid- 17.2% appliance four times even that of the ST population (generally Can take care of self without aid- 60.2% considered to have poor educational outcomes). appliance 1.21. In addition to the very high average rates of out- Aid-appliance not tried/available 9.0% of-school children among disabled children, the rates Source: NSS, 58th round. Bank staff estimates. among some disability categories are extremely high, with more than 60 percent of multiple disability and 1.18. A second key social indicator that the NSS reports almost half of mentally disabled 6-13 year olds out of is education enrollment and attainment. Educational school. Even the lowest disability group (surprisingly, indicators were also captured for PWD in the 2001 visual) have almost 30 percent of children in the general census. The summary results are reported below, education group out of school. It is very clear from these with more detailed analysis and econometric findings numbers that India's hopes of reaching the educational presented in the education chapter. Figure 1.7 presents MDGs are highly unlikely to be realized unless there is educational attainment levels for PWD and the general major improvement in getting CWD into school. population averaged across all age groups, using 2001 census data for both groups. It shows substantially 1.22. In terms of individual and household welfare, higher rates of illiteracy among the PWD population employment is a key variable for analysis among relative to general, and conversely lower shares of PWD disabled adults. This is discussed in detail in Chapter 26 NSS data from 2002 show even higher rates of illiteracy among most PWD categories, most notably visually disabled. 27 These can be considered very much lower bound estimates, as school attendance for the purposes of the survey was not required every day. Other national attendance data from Pratham from 2005 suggest that regular attendance rates for all children may be around 70 percent. 16 PWD have high rates of illiteracy relative to the general population, for some disabilities close to double national PROFILE OF PERSONS WITH DISABILITIES averages FIGURE 1.8: EDUCATIONAL ATTAINMENT FOR GENERAL POPULATION AND BY DISABILITY, 2001 CHAPTER 1: SOCIO-ECONOMIC Mental Movement Graduate + Hearing Matric/sec < grad Speech Middle Primary Visual Literate < primary Illiterate All PWD General 0 10 20 30 40 50 60 70 % of category Source: Census, 2001. 5, but summary statistics are presented in Figure 1.9, attests also to their low social standing and high levels which indicates that PWD employment rates were of vulnerability.28 NSS data indicate that women with substantially below those of the general population disabilities have much higher rates of widowhood in both urban and rural areas and for both genders. than women without disabilities in both urban and Chapter 5 also shows that the relative employment rural areas ­ in both cases around four times the non- situation of people with disabilities has deteriorated WWD rate. Conversely, the proportion of women with during the 1990s, with those with the lowest educational disabilities who are currently married is much lower than levels doing the worst. non-disabled women. This can be seen for the first half of the 1990s in Figure 1.10. The explanation for such 1.23. A final key individual welfare indicator for women differential rates can most likely be found in the common is marriage and widowhood rates. It has been clearly practice of marrying of women with disabilities to men shown that widows in India have much lower average much older than themselves ­ men who are unable to living standards, and much sociological literature find more "marketable" brides.29 The proportions of children with disabilities out of basic education is dramatically higher than national averages for non-disabled children FIGURE 1.9: SHARE OF 6-13 YEAR OLDS OUT OF SCHOOL BY SOCIAL CATEGORY, 2005 Multiple Locomotor Speech Hearing Visual Mental All disabled Muslim OBC ST SC Females Males All children 0 10 20 30 40 50 60 70 % of category out of school Source: SRI (2005). 28 Chen and Dreze (1992). 29 See Unnati and Handicap International (2004) for more detailed marriage data and qualitative insights on the marriage practices of men and women with disabilities in Gujarat. 17 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES FIGURE 1.10: EMPLOYMENT RATES OF PWD AND NON-PWD BY · substantially lower employment rates. This is not GENDER AND LOCATION, EARLY 2000s definitively an indicator of lower living standards 100 in India, due to cultural preferences with respect % of working age population 90 80 to womens' work outside the home and features 70 such as higher unemployment rates among the 60 50 educated. However, taken together with the much 40 30 lower education rates of PWD, it is probably a good 20 10 indication of lower living standards; 0 · clear evidence from the UP and TN survey of UM PWD ALL PWD RM PWD UM GEN ALL GEN UF PWD RM GEN RF PWD UF GEN RF GEN declining rates of disability in households as they Source: Mitra and Sambamoorthi, based on NSS 58th and 47th rounds become richer; in 2002 and 1991 (PWD) and 55th and 50th rounds in 1993/94 and 1999/00 (non-PWD). · non-incomeindicatorsfromUPandTNlikefrequency of three meals a day; Rates of widowhood for women with disabilities are · the higher than average rural share in the PWD around four times those of women without disability, household population, with considerably higher and the share of women with disabilities who are married than average poverty rates in rural areas nationally; is around half · the very high rates of widowhood for women, implying higher probabilities of being poor; and B. Conclusions and · consistent findings from qualitative work (both recommendations in the UP/TN study and in other studies in India 1.24. A range of non-income indicators, together with on disability) of community perceptions that the asset and consumption findings from the UP and households with disabled members tend to be TN survey, cumulatively suggest that PWD households poorer and more vulnerable.30 and individuals are notably worse off than average. 1.25. Clearly much remains to be done in getting These include: a clearer picture of the scale and composition of · muchlowereducationalattainmentrates,associated PWD in India. This is a large agenda, but some initial in India with lower living standards; recommendations are: FIGURE 1.11: MARITAL STATUS OF WOMEN WITH AND WITHOUT DISABILITY (1991&1993-4 FOR AGES >15) 80 70 60 50 Percent 40 30 20 10 0 Never Married Currently Married Widowed Divorced/Separated Rural WWD (1991) All Rural Women (1993-4) Urban WWD (1991) All Urban Women (1993-4) Source: Das (2006). 30 See ORG-MARG (2006) for UP and TN; Unnati and Handicap International, op.cit., for Gujarat; Erb and Harriss-White, op.cit., for TN; Lang (2000) for Karnataka; ActionAid (200*) for AP and (200*) for Rajasthan. 18 BOX 1.2: CENSUS QUESTIONS ON DISABILITY DESIGNED BY UN WASHINGTON GROUP ON DISABILITY STATISTICS PROFILE OF PERSONS WITH DISABILITIES The Washington Group has developed some model census questions on disability, as follows: Because of a physical, mental or emotional health condition.... CHAPTER 1: SOCIO-ECONOMIC 74.1. Do you have difficulty seeing even if wearing glasses? 74.2. Do you have difficulty hearing even if using hearing aid/s or are you deaf? 74.3. Do you have difficulty walking or climbing stairs? 74.4. Do you have difficulty remembering or concentrating? 74.5. Do you have difficulty (with self-care such as) washing all over or dressing? 74.6. Do you have difficulties communicating (for example, understanding or being understood by others)? Question response options are No, Some, a Lot, and Unable. Source: UN Washington Group, cited in Mont, 2007. · there is a need to harmonize definitions of disability countries than others, or for women than men), and categories across NSS and census. In this process, are still not well-tuned to capturing a number of there is also a need to improve and harmonize the mental disabilities, the general approach to look at approaches across disability types within each activities of daily life is instructive. The ongoing pilot survey. This has been recognized by GoI in the work efforts of the NSSO to test new methods of asking of its Technical Advisory Group on Disability Statistics. disability questions are most welcome in this regard. The issue is also clearly noted in the 11th Five year Plan, which states that "There is an urgent need for both a · either adding additional specific categories of credible definition and a system of data collection disability to such investigations or at least allowing relating to persons with disabilities". Specifically 31: for a broad "other category". (i) in the census, there are inconsistencies across · revising the NSS disability module for the next disability types as to whether the functional limitation dedicated round, in particular improving how applies to a situation where an assistive device is questions about disability are asked, PWD household used, an overly wide definition of visual disability, consumption information and other welfare and an overly subjective definition of some elements indicators. The lessons of recent and planned pilots of mental illness; and (ii) in the NSS, the current of NSS should be instructive in this regard. GoI, state definitions of disability and disability types are a mix governments and the non-government sector should of activity limitation (general definition, visual and also facilitate more detailed analysis of existing data mental disability), functional limitations (e.g., speech) than has been typical to date, and consider financing and impairments (e.g., locomotor) which result in future analysis more systematically to address the inconsistent approaches across disability type. large knowledge gaps on the socio-economic · in both census and NSS, piloting new methods of situation of people with disabilities. asking disability questions which are more in line · incorporating disability questions into mainstream with good international practice as exemplified by health, education and other surveys to an extent the UN's Washington Group and by WHO. Box 1.2 not done to date. This includes the main schedules below gives examples from the Washington Group of NSS, so that more reliable comparisons between census questions, which have already been field the disabled and non-disabled populations on critical tested in 7 developing countries including India.32 indicators like educational attainment can be made. While these questions also have their challenges (e.g., dressing may be more difficult in some n 31 See Mitra and Sambamoorthi (2006). 32 The countries are Vietnam, India, South Africa, Philippines, Fiji, Indonesia and Mongolia. See Mont, op.cit. 19 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES 20 Photography: Caroline Suzman, World Bank Photo Library 21 EXECUTIVE SUMMARY PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES 22 2.1 This chapter explores evidence on attitudes 2.3 Research from urban and rural Andhra Pradesh in to disability in India, and their implications for the early 2000s asked people about whether disability public policy. Attitudes of society, families and PWD was a punishment or curse of God.34 The researchers themselves contribute to converting impairments into found around 40 percent of respondents agreeing that disabilities. Research in India has consistently found it was, with the share of people holding such views substantial social marginalization of people with increasing with age, being higher among women, disabilities. The attitudes of specific societies are critical higher for lower socio-economic groups, and higher for in assessing both the intensity of disability (i.e., how those who were illiterate. Interestingly, there was not a disabling a given type or level of impairment becomes major difference in such views between urban and rural for the individual disabled person) and in assessing respondents, though urban people were slightly less areas where collective action is likely to fail the disabled likely to hold such views. This is in contrast to earlier community, and hence public action be desirable. In qualitative research in Karnataka, which had found addition to the attitudes of the general society, the higher belief in medical causes of disability in urban attitudes of persons with disabilities and their families populations.35 are important, in some ways even more important. At the same time, the different sets of attitudes clearly 2.4 The present study asked a similar question for a interact, so that negative views about disabled people much larger sample of households in rural UP and TN, in the broader community are likely to be internalized and the results are presented in Figure 2.1. For both in many cases by people with disabilities and their households with and without a disabled member, household members. around half the respondents believed that disability was always or almost always a curse of God. The 2.2 Much of the literature on disability in India has variations in this belief between the two states were not pointed to the importance of the concept of karma in dramatic. An additional interesting result was that in UP attitudes to disability, with disability perceived either as respondents in households with a PWD had a 15 percent punishment for misdeeds in the past lives of the PWD, or higher share with this belief than households without a the wrongdoings of their parents. As two Indian authors PWD member. have put it, "At a profoundly serious and spiritual level, disability represents divine justice".33 At a more mundane 2.5 The results in Figure 2.1 are aggregated across level, people with disabilities are traditionally perceived different disability types. The survey also asked the as somehow inauspicious. Much qualitative research has same question by major disability categories and results found considerable social marginalization of people with are presented in Figure 2.2., which show significant disabilities in India, though most also acknowledge that differences in the perception of disability as a curse the social status of the PWD's family has an impact on according to type of disability, with both visual and their potential acceptance in society. Box 2.1 discusses mental disabilities viewed as more likely to be due to a images of PWD in Hindu mythology and Bollywood curse of God, and non-polio locomotor disability (in most cinema by way of illustrating popular culture perceptions cases from injuries/accidents) significantly lower than of people with disabilities. average (though still substantial). 33 Bacquer and Sharma (1997); Coleridge (1993), Miles (1995), and Erb and Harriss-White (2002). 34 Rao et al (2003). Such insights are supported by qualitative work in rural AP by ActionAid (200*). 35 Lang (2000). 23 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES BOX 2.1: DISABILITY IN INDIAN MYTHOLOGY AND BOLLYWOOD MOVIES An interesting perspective on Indian attitudes to disability is two forms of mythology: the traditional Hindu myths, which still play an important role in shaping social norms and values, and the "modern myth machine" of Bollywood, which has impacts on popular culture and society. In Hindu mythology, the portrayal of people with disabilities is often negative, but it also exhibits a strong gender bias in terms of the perceived capacities of disabled men and women. Disabled men in the Hindu myths are in some cases powerful and capable people, as can be seen with the visually impaired king Dritarashtra and the orthopedically impaired Shakuni in the Mahabharata war (though both are on the side of evil). Such images of powerful but threatening disabled men have been reinforced by historical figures such as Taimur Lang. In contrast, women with disabilities in Hindu mythology are simply irrelevant. A prime example comes in a story from the Karthik Poornima, where Lord Vishnu refuses to marry the disfigured elder sister of Lakshmi, saying that there is no place for disabled people in heaven. The sister is instead married to a peepul tree. Overall, there are however also positive examples of people with disabilities in Hindu mythology and ongoing research of Sruti Mohapatra from Swabhiman in Orissa is looking into the social and cultural aspects of portrayal of disabled people in both Hinduism and Islam. In Bollywood films in which PWD feature, several common images of disabled men and women emerge. Firstly, the disabilities of the hero(ine)s are typically acquired after birth rather than congenital, "normalizing" the actor somewhat. Equally, the disability is quite often cured during the course of the film. In addition, the stars are often from better-off socio- economic strata, with resources to promote their integration, though they remain often dependent on others. Apart from these similarities, there are also gender differences in perceptions of disabled people in Bollywood movies. First, men with disabilities feature far more often than women with disabilities. Second, men with disabilities are often loved by a devoted woman without disabilities (as in Saajan), whereas women with disabilities are rarely loved by men without disabilities (and in cases where they are such as Mann, the men loved them before the onset of disability). Third, women with disabilities almost never attain economic self-sufficiency. While male stars with disabilities may not be very wealthy, they can attain such independence. Finally, the disabilities that women are portrayed with are very rarely ones that impact their physical appearance, so that they largely remain beautiful. Overall, women with disabilities in India cinema are doubly weak ­ women and women with disabilities. This contrasts to more frequent portrayals in Hollywood cinema of women with disabilities who have strength and discover independence. However, it is important also to note films that have sought to enhance the sensitivity of society towards the needs, rights, sensibilities and potential of people with disabilities - Sparsh, Black, Koshish (both old and new), Jagriti, Dosti, Main Aisa hi hun and Koi Mil Gaya to name a few. Lagaan is an excellent example of a mainstream film that has highlighted the process of inclusion of a dalit disabled person. More recently, Taare Zameen Par, which centres around a boy with dyslexia, has won many national film awards. In the absence of opportunities for interaction between people with disabilities and society at large, such films can play an important role in highlighting aspects of the lives of people with disabilities that are not clearly understood and in dispelling myths and biases that society holds about them. Films such as those noted have also demonstrated the attempt of non-disabled people to understand people with disabilities. At a different level, there are initial but interesting initiatives in the NGO sector on the issues of media and people with disabilities. There have been already several national film festivals on disability issues, including one focusing on mentally challenged people in November 2006. Related to this, NGOs have also tried more directly to stimulate film and media material by PWD themselves, and to engage the Indian film and television industry on disability issues. For example, Brotherhood, a Delhi- based NGO, has organized training workshops for people with disabilities on film making, and conducted sensitization sessions with Indian scriptwriters and film-makers. As a result, short films by disabled people have been made. Brotherhood is currently seeking financial support to establish a national disability film and communication centre which would conduct research on portrayal of disabled people in film and media, develop an archive of films on disability issues, sensitize film makers, journalists and other media people, and support film makers, in particular disabled film-makers, through availability of basic equipment and studio facilities. Sources: Bhambani (2003) and (2005). Sharma (2006); Materials from Brotherhood. 2.6 The UP and TN study surveyed just over 1400 2.7 With respect to education, people were asked households with and without disabled members about under what circumstances children with specified their attitudes to participation of PWD in some key disabilities could participate in regular school, and/or in social and economic activities. The three major activities special schools. Table 2.1 presents the findings on regular assessed as critical to "normal" social participation of and special schooling. The table reports the share of PWD were education, employment and marriage/family respondents reporting that children with the indicated life. The survey also asked about participation in local disabilities should always or almost always attend each community and political life. type of school. Several interesting findings emerge: 24 Half rural respondents in rural UP and TN believe that disability is always a curse of God DISABILITY AND PEOPLE WITH DISABILITIES FIGURE 2.1: BELIEF THAT DISABILITY A CURSE OF GOD, RURAL UP AND TN, 2005 CHAPTER 2: ATTITUDES TOWARDS TN non-PWD UP non-PWD All non-PWD TN PWD UP PWD All PWD 0 10 20 30 40 50 60 70 % of respondents Source: UP and TN survey, 2005. % of respondents replying that disability was always/almost always a curse of God · Overall, there is low acceptance of children · For children with mental illness and mental with disabilities attending regular schools.36 retardation, almost half of respondents (including At the same time, there are major differences in PWD households) did not think that they could by disability type in the acceptability of CWD always attend either regular or special school. This attending regular schools. Acceptance that confirms the much more serious attitudinal issues children with locomotor disabilities can always with respect to children with these disabilities. attend regular school is high (though acceptance that they could attend a special school is even · Perhaps the most interesting overarching result higher). For those with vision and speech/hearing is that households with disabled or severely disabilities, only between a fifth and a quarter disabled members exhibit very similar attitudes of respondents thought that they could always/ to those of households without disabled almost always attend regular schools. However, for members. The small differences indicate slightly children with mental illness or retardation, there less willingness of households with disabled was very high agreement that they should never members to accept attendance of disabled attend regular schools. children in regular schools. FIGURE 2.2: BELIEF THAT DISABILITY A CURSE OF GOD BY DISABILITY TYPE, RURAL UP AND TN, 2005 Mental Vision Speech/hearing Locomotor non-polio Locomotor polio 0 10 20 30 40 50 60 70 % of respondents Source: UP and TN survey, 2005. % of respondents replying that disability was always/almost always a curse of God. 36 The results receive some support from the AP survey, where 42 percent of respondents disagreed that children with disabilities could be educated in regular schools. It is also worth noting that there is a school of thought particularly for hearing and visually impaired children that supports separate education in primary school, with integration later. In India, the fact is that only around 5 percent of children with disabilities who attend school at all are in general schools, so that for the majority such options are not a practical reality 25 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES TABLE 2.1: ACCEPTANCE THAT CHILDREN WITH DISABILITIES · At the same time, more than a quarter of SHOULD ALWAYS ATTEND SPECIAL (TOP) AND REGULAR households in TN felt that a PWD should never (BOTTOM) SCHOOLS, BY DISABILITY TYPE, UP AND TN, 2005 marry a non-PWD. On this issue, the difference with Special School Non-PWD PWD Severe PWD UP were very pronounced. Locomotor 96.7 95.3 96.2 · Despite the majority acceptance of the possibility Vision 91.1 87.2 88.3 of PWD/non-PWD marriage, around half Speech/hearing 86.5 82.5 83.4 respondents felt that dowry would always need to Mental Ill 61.4 50.1 52.9 be adjusted in such cases. MR 60.8 51.9 54.0 2.9 An important associated question was the Regular School Non-PWD PWD Severe perceived capacity of women with different disabilities PWD to have children and care for them. Much sociological Locomotor 81.8 80.6 80.4 literature from India notes the fundamental importance Vision 25.7 27.8 25 of these roles in defining womanhood.40 Exclusion from Speech/hearing 21.3 19.9 19.9 marriage and child rearing results in "social obscurity and Mental ill 2 1.9 2 annulment of femininity".41 The results from the UP and MR 1.1 1.3 1.3 TN survey are presented in Table 2.2 below by disability Source: UP and TN survey, 2005. Bank staff estimates. type on the proportion of households agreeing with the statement that women with specific disabilities can always/almost always have and care for children. The 2.8 Previous research has pointed to significant main points to note are: challenges for persons with disability in getting · Overall, positive perceptions on the ability of married and having families.37 Even where marriage can disabled women to have and care for children are be arranged, disabled women in particular are frequently minority views. married to much older men, and rates of divorce and abandonment have been found to be high, as the NSS · There is strong variation by disability type in data on widowhood among disability would seem to positive perceptions, with again mental illness support. Attitudes to marriage and family life were also and mental retardation attracting the strongest asked in the current study and the findings are presented negative attitudes. in Figures 2.3 and 2.4. A few observations emerge: · There are sharp variations by state in the perceptions with respect to different disabilities.42 · Overall, unconditional acceptance of a PWD marrying a non-PWD was found in only around TABLE 2.2: POSITIVE PERCEPTIONS OF CAPACITY OF WOMEN WITH DISABILITIES TO HAVE AND CARE FOR CHILDREN, UP half of households. This did not show much state AND TN, 2005 (%) variation. Qualitative work undertaken in parallel Disability All UP TN with the survey revealed that there was wider Locomotor 53.7 65.8 41.4 acceptance of PWD men marrying non-PWD women than the reverse, particularly if the men were well- Vision 34.8 58.6 10.6 off.38 The insight is supported by survey findings Hearing/speech 65 57.7 72.5 from Gujarat of women with disabilities having more Mental illness 6.9 13.4 0.3 than double the rate of spouses with disabilities.39 MR 3.6 7.2 0 In addition, communities indicated that it would Source: UP and TN village survey, 2005. % of respondents answering "always/ generally be easier for people with the same almost always" to statement "Women with [specified] disabilities are capable of having and caring for children". disabilities to marry. 37 See for example, Unnati and Handicap International (2004); ActionAid (200*) for AP; and Bhambani (2005) for a general discussion of attitudes to marriage of women with disabilities. 38 ORG-MARG (2006). This is consistent with research on disability and marriage by Bhambani (2005), and from Erb and Harriss-White, op.cit. 39 Unnati and Handicap International, op.cit. 40 See Desai and Krishnaraj (199*); Coleridge (1992); Ghai (2003). 41 Ghai. Op.cit. 42 Research from AP found that around two thirds of respondents agreed that PWD could have happy family lives, further suggesting the possibility of inter-state variations in attitudes. Rao et al, op.cit. 26 DISABILITY AND PEOPLE WITH DISABILITIES FIGURE 2.4: OPINION ON NEED FOR DOWRY ADJUSTMENT IF FIGURE 2.3: ACCEPTANCE OF PWD MARRYING NON-PWD PWD MARRIES NON-PWD CHAPTER 2: ATTITUDES TOWARDS DK DK TN UP All Never TN Never UP Sometimes All Sometimes Always/almost Always/almost 0 10 20 30 40 50 60 0 10 20 30 40 50 60 % of respondents % of respondents Source: UP and TN village survey, 2005. DK = don't know/can't say. 2.10 A final important element of intra-household 2.11 In the UP and TN survey, households were also attitudes and community views relates to violence asked about participation of PWD in community activities against women with disabilities. This is a subject on like festival and religious celebrations, and on participation which little quantitative research has been done to in local political and group activities such as gram sabhas date in India. However, a recent study from Orissa and farmers' associations. The results, presented in Figure indicates that women with disabilities were subject 2.6, are far more positive than several of the attitudes to significant domestic abuse and sexual abuse, and presented above. Overall, there was high agreement that the situation was sharply worse for women with with the proposition that PWD should always be allowed mental impairments relative to women with other to participate in community activities, and almost as types of disabilities.43 Results are presented in Figure strong agreement that they should be included in local 2.5. The results for rape are the most shocking, with fully political and group activities. In both cases, the share of one quarter of women with mental disabilities reporting respondents indicating that PWD should never be allowed having been raped (with the large majority carried out to participate was only around 1 percent. by family members), and almost 13 percent of women with locomotor, visual and hearing disabilities. In only 2.12 Interestingly, however, with respect to a small share of cases did the women report the abuse participation in community activities, qualitative work to her family, and in the vast majority of those cases with the same communities found that the initially the reaction of the family was either not to listen or to positive responses weakened during deeper discussion, pretend nothing had happened. with concerns for certain celebrations such as weddings Women with disabilities in Orissa report high rates of physical and sexual abuse, particularly for women with mental disabilities FIGURE 2.5: WOMEN WITH DISABILITIES REPORTING PHYSICAL AND SEXUAL ABUSE, ORISSA, 2005 Unwanted touching Mental Rape LD/VI/HI Physical abuse 0 10 20 30 40 50 60 % of respondents Source: Swabhiman (2005). Physical abuse = "being beaten at home". Unwanted touching = "touching, pinching etc". 43 The results on higher levels of abuse are supported by research such as that of ActionAid in AP. 27 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES Attitudes to participation in community and political · Overall, the assessment of PWD capacity for life of PWD are much more positive successful employment is low. Even in the best FIGURE 2.6: POSITIVE ATTITUDES TO PWD PARTICIPATION IN case (locomotor disability) only half of respondents COMMUNITY AND POLITICAL ACTIVITIES, UP AND TN, 2006 felt that PWD could be always/ almost always successfully employed. This share fell to less than TN 30 percent for vision impairments, and was less than 2 percent for both mental illness and mental UP retardation. In contrast, respondents felt that people with mental illness could never be successfully All employed in 86 percent of cases, and for mental retardation the share was 78 percent. 20 30 40 50 60 70 80 90 100 % of respondents Political/group activities Community activities · There is major variation in attitudes to the Source: UP and TN village survey, 2005. % of respondents answering always/almost possibility of successful employment by disability always to participation of PWD. type, with mental disabilities experiencing the most negative attitudes. For the other three categories, that the presence of PWD may be inauspicious. This more the shares are higher. In addition, around a further nuanced situation is supported by research from Orissa third of respondents felt that those with locomotor, finding low rates of participation by disabled women in vision and hearing/speech disabilities could be religious and social life, with the situation much worse for successfully employed sometimes. The variation by women with mental impairments.44 Research in Gujarat disability type is consistent with previous research has also found that people with disabilities attended in rural south India, though the relative impact only around half of social and religious functions and of different disabilities varied, with for example a were often discouraged from attending marriages.45 strong premium placed on visual acuity but notably With respect to local political participation, households less on hearing capacity (reflecting the demands of with PWD had similar (high) voting rates to non-PWD agricultural work).46 households in gram sabha elections, though somewhat lower attendance rates as meetings. · Whiletheabovefindingsareperhapsnotsurprising, 2.13 The final attitudinal questions were about whether the major variation between UP and TN on attitudes PWD can be successfully employed and the results are to non-mental disabilities was less expected. More presented in Figure 2.7. A few points emerge: research is needed on the drivers of such differences. Strong positive attitudes to PWD employment capacity are low, and there is major variation in attitudes to PWD employment, both by disability type and location FIGURE 2.7: POSITIVE ATTITUDES TO PWD EMPLOYMENT BY DISABILITY BY, UP AND TN, 2005 80 % answering always/almost always 70 60 50 Total 40 UP 30 TN 20 10 0 Locomotor Vision Hearing/speech Mental ill MR Source: UP and TN Village Survey. Proportion of HH head respondents answering always/almost always to statement: "People with a disability can be successfully employed". 44 Swabhiman (2004). 45 Unnati and Handicap International, op.cit. 46 Erb and Harriss-White, op.cit. 28 Part of the explanation may lie in commonness DISABILITY AND PEOPLE WITH DISABILITIES TABLE 2.3 GOVERNMENT OFFICIALS AND EDUCATION AND of disabilities in different areas, as for example the HEALTH WORKERS HAD THE HIGHEST RATES OF NEGATIVE ATTITUDES TOWARDS PWD IN ORISSA incidence of locomotor disabilities from polio is CHAPTER 2: ATTITUDES TOWARDS higher in UP and may be associated with more Organization % regarding PWD as burden accepting attitudes. Government officials 37 2.14 An additional interesting finding on Education providers 38 employment is that responses by PWD themselves Police and court officials 23 to the same question revealed surprisingly similar Financial sector workers 32 results in terms both of low share of respondents Corporate workers 19 answering positively on PWD employment capacity and in terms of the variation in positive response Community places 10 shares across disability types. In all cases, the share of Transport workers 12 PWD answering positively was slightly lower than for Hospital workers 36 household heads, indicating that there is a major self- Source: Swabhiman (2005). esteem agenda among PWD to be addressed in order to improve their labor market outcomes. 2.15 All the above results are from households. In towards attitudinal change on disability, in some cases qualitative work, similar questions were addressed with quantifiable impacts. Some efforts have been to key service providers and officials, including broad-based, others focus on service provides in specific ANM/anganwadis, teachers, doctors, and panchayat areas, while others work at a very localized level through representatives. Overall, the opinions of service CBR and other channels. One of the more ambitious, providers were somewhat more inclusive with well-documented and high impact efforts at attitudinal respect to participation of PWD in their services. The change is outlined in Box 2.3, which demonstrates the same did not appear to be the case with panchayat potential impact of effective public/private partnership representatives, who largely reflected the views of in spreading awareness and reducing stigma for their communities. disabilities. There are also many examples of NGOs working with educators and other community figures 2.16 With respect to education, there has been more to change attitudes and outcomes, as illustrated by the research on the attitudes of teachers and education example of Vikas Jyot Trust in Vadodara in Box 2.2. administrators to CWD and their inclusion in regular school settings. This is discussed in Chapter 5. More Conclusions and recommendations broadly, much research remains to be done on assessing, and developing strategies to improve, the 2.18 Changing societal attitudes to people with attitudes of public officials and service providers to disabilities, even among people with disabilities PWD. Despite the PWD Act, some evidence suggests themselves at times, presents many challenges. that these key groups ­ at least in some states ­ may However, a basic starting point is facts. The leprosy continue to have negative attitudes towards PWD, as campaign and its impact are clear demonstration that data from Orissa on attitudes to PWD presented in part of the stigma attaching to disability is driven by Table 2.3 demonstrates. The attitudes of corporates and ignorance (see Box 2.4). It will thus be critical that various workers in community institutions were more accepting public health, educational, and other general awareness than those of government officials, education and campaigns of government and non-governmental health workers. sectors drive home the causes of disability, and that disability is not a pre-ordained event. 2.17 While providing empirical insights is useful, how to work on changing long held and sometimes culturally- 2.19 Changing attitudes to disability is likely to area grounded attitudes is of course much more challenging. where it is particularly important for governments It appears that the challenges will be particularly acute to work with people with disabilities, NGO/DPOs, in the areas of mental illness and mental retardation. and communities. However, governments at all levels However, there are positive examples of NGOs working can work to identify effective change agents in their 29 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES BOX 2.2: DEVELOPMENT ORGANISATIONS SUCCESSFULLY TAKING UP DISABILITY ISSUES AT COMMUNITY LEVEL - VIKAS JYOT TRUST, VADODARA VJT has been working for the past 30 years in the slums of Vadodara on the rights of women and children. It has been implementing several community based programmes and activities for street children, adolescent girls, women in distress, commercial sex workers and their children. After participating in an awareness and skill development workshop on inclusion of people with disabilities in development programmes the staff of VJT have now assumed a significant role in including them in their programmes. "It was only after we participated in this initiative that we became aware of the services available in the district for people with disabilities. Earlier we had very limited information and no idea of the possibility of including people with disabilities in development processes", says Jyoti. Today VJT, without any additional resources, has assumed new roles in the community as far as people with disabilities are concerned. They identify people with disabilities; link them with the service providers; establish personal contact with people with disabilities and their families and enable them to work out individual plans; involve community to enhance acceptance of people with disabilities; orienting civil society (police, railway protection force, anganwadi and health workers, staff of remand and observation homes for children etc.) to the rights and needs of people with disabilities. One area where they have concentrated efforts is in getting children into schools. Using films, games, experience sharing and informal discussions, they facilitated interactions between children with disabilities and non-disabled children; teachers from mainstream schools that had admitted children with disabilities and those that had not done so; and parents of children with disabilities and parents of non-disabled children. This series of one-day interactions helped both the groups in each case to share their experiences, feelings, and hopes, barriers that they were facing and what they would like to and could do. It helped in highlighting the need for inclusion of children with disabilities, the support available from the government or otherwise for children with special needs, and the positive experiences as well as challenges of those who had attempted to be inclusive. Vikas Jyoti Trust has supported the enrolment of children with disabilities in mainstream schools and special schools. Source: Officer (2005) communities, and allocate explicit funding to support each year in International Day of Disabled Persons.47 their activities. They can also contribute to raising Finally, the potential of cultural performance and the the profile of people with disabilities through awards arts for both transformation of self-perceptions among and other forms of recognition such as the national PWD and of the general community of their capacities Awards for Persons with Disabilities, which are given is significant, as the experience of Ability Unlimited, a to outstanding employers and persons with disabilities dance troupe of people with disabilities, demonstrates BOX 2.3: CHANGING ATTITUDES OF YOUNG PEOPLE THROUGH DANCE Ability Unlimited is a professional dance troupe of disabled people which provides training and employment opportunities for its members and also seeks to expose non-disabled people to the artistic capacities of people with disabilities. Founded in 1989 in Bangalore, it moved in the early 2000s to Delhi, where the group has performed to around 50,000 school children, and as well performances for the general population. It has also performed abroad in Malaysia, Finland, and in 2007 the USA. The troupe currently has a pool of around 150 performers of different socio-economic and caste backgrounds who perform a dance repertoire including traditional Indian folk tales, "martial arts on wheels" performances of Thang (a Manipuri martial art with swords), stories of the life of Buddha and other material. In its own words, Ability Unlimited "is committed to changing apathy, negativity and fear that surrounds education, employment and inclusion of persons with disabilities in arts by providing equal access to arts for them". School students pay to view the performances, as well as being exposed to issues such a lack of accessibility of school premises by assisting the disabled performers in set-up. It also acts as an important form of dance therapy for the performers. Feedback from children seeing performances indicates positive impacts on their perceptions of people with disabilities and their capacities, including among parents of the performers themselves. Media reactions also attest to the impacts on audience of all ages: "It is for the first time that we have seen a holistic mega therapeutic theatre project of this magnitude...where all the participants are physically and mentally challenges...Movement with wheelchairs and crutches was immaculately timed to different choreographic patterns". The Hindu. "Therapeutic ballet by special kids steals show". The Asian Age. "Though they are our children, we never knew that they had so much in-built power within them, now we feel proud to be called their parents, and will definitely encourage them to pursue their dreams which are possible now". Parent reaction quoted in New Straits Times, Malaysia For more information, visit www.abilityunlimited.com. 47 Similar awards schemes exist in the NGO sector, e.g., the NCPEDP Helen Keller Awards, and the Cavinkare Ability Awards for Achievers with Disability, sponsored by the Cavinkare consumer products company and the Ability Foundation. 30 DISABILITY AND PEOPLE WITH DISABILITIES BOX 2.4: RAISING AWARENESS AND CHANGING ATTITUDES TO LEPROSY Since 1983, leprosy has been easily curable with Multi-Drug Therapy. The biggest remaining barrier to eliminating the disease is ignorance and stigma. The BBC World Service Trust developed a campaign in India to address this, in partnership with CHAPTER 2: ATTITUDES TOWARDS Doordarshan TV and All-India Radio. The campaign underlined the fact that leprosy is totally curable and that drugs are available free throughout India. It also stressed that leprosy is not spread by touch and that people with leprosy should not be excluded from society. The various methods and details included: · TV ­ A total of 25 advertising spots and 12 campaign dramas were produced and broadcast almost 1,500 times. With repetition, they accounted for more than 45 hours of TV. Among the formats used were Hindi film romances, rural folk operas, famous Hindu fables, domestic dramas and comedies. · Radio ­ A total of 213 radio programmes were broadcast more than 6,000 times. Thirty-six radio advertising spots were made. They were then "transcreated" into 18 local dialects, making 136 spots. There were also 12 musical dramas and an eight-part radio serial, and 41 radio call-in shows. · Community ­ 1,700 live theatre performances in villages, small towns and urban slums to widen the reach with approximately 500,000 people attending. Performances were based on popular-entertainment forms, including folksongs, magic shows and drama. · Poster ­ offered basic information about leprosy symptoms and treatment and stressed the importance of community care and support for people with leprosy. 85,000 produced and displayed. · Videos ­ 2,700 'video van' screenings featuring the most popular TV spots and dramas produced under the BBC-Doordarshan partnership. · Press Relations ­ More than 95 articles appeared in the regional English and vernacular press. Two-day press workshops on leprosy were held. · Film ­ A 10-minute feature film on a leprosy theme screened in cinemas in Hindi-speaking states Impact: Independent market surveys were conducted at the start of the campaign, after the first round of campaigning and again after the second round. The findings were: · Media Reach ­ the campaign reached 59 percent of respondents, equivalent to 283 million people. · Misconceptions ­ the equivalent of 178 million people were persuaded to reject belief that leprosy is hereditary and the equivalent of 120 million people corrected their understanding that leprosy is communicable by touch. · Curability & Communicability ­ The total population who believe leprosy is transmitted by touch fell from 52 to 37 to 27 percent. The share believing that leprosy patients on treatment are infectious fell from 25 to 20 to 12 percent. The share who regard leprosy as curable rose from 84 to 88 to 91 percent of the population. · Symptoms ­ awareness of loss of sensation as a possible symptom rose from 65 to 72 then 80 percent. Awareness of pale reddish patches as a possible symptom remained level at 86%. Awareness of non-itchy patches as a possible symptom rose from 37 to 53 to 55 percent. · Awareness ­ Awareness of the modern cure for leprosy in control villages was only 56 percent, while in villages with live drama shows was 82 percent. Rural Awareness of a modern leprosy cure free of cost was 89 percent among those exposed to the poster, against 20 percent among those not exposed. · Stigma ­ Percentage of people claiming they would be willing to sit by the side of a leprosy patient, was 10 percentage points higher in drama show villages than control, and the share of people claiming they would be willing to eat food served by a leprosy patient rose from 32 to 50 percent. Source: Officer (see Box 2.3). pity or "superhuman" in dealing with their disabilities. However, this is not always the case, as the powerful work 2.20 A second important step where media, persons of activists such as Harsh Mander demonstrates.48 Equally, with disabilities, social activists, and NGOs are likely to the disability movement is becoming more effective have comparative advantage is putting the experience in disseminating insights into the lives of persons with and success stories of persons with disabilities into the disabilities through vehicles such as the Success and public arena. This is increasingly being done, but at times Ability quarterly of the Ability Foundation in Chennai. in ways that characterize disabled people as objects of 48 Mander (2001) and regular newspaper pieces. 31 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES 2.21 The most powerful impacts, however, are likely to When you encounter these situations, think "person" be felt at the individual level. An important step in this first instead of disability and you will eventually regard is following the guidance offered by people with relax; disabilities in India on interactions with disabled people. Their "simple tips" are as follows:49 · when meeting a person who is visually impaired, always identify yourself and others who may be with · listentothepersonwiththedisability.Donotmake you. assumptions about what the person can or cannot do; · speaknaturallytoahearingimpairedpersonanddo not exaggerate or over-emphasize your speech, as · whenspeakingwithapersonwithadisability,talk this will be easier for the person to "see" the word. directly to that person, not through her companion; · whenspeakingwithapersonwhousesawheelchair · extend common courtesies to people with or crutches, place yourself at eye level in front of the disabilities as you would to anyone else. Shake person. hands or hand over business cards. If the person can not shake your hand or grasp your card, they will tell · treatadultsasadults.Addresspeoplewithdisabilities you. Do not be ashamed of the attempt, however; by their first names only when extending the same familiarity to others; and · offerassistancetoapersonwithadisability,butwait until your offer is accepted before you help; · never pretend to understand the speech of a person with a disability if you are having difficulty · it is okay to feel nervous or uncomfortable around doing so. people with disabilities, and it is okay to admit that. n 49 This taken from Swabhiman (2004) and Success and Ability, Oct-Dec. 2005. 32 Photography: Nandan R, Bangalore Photography Club 33 EXECUTIVE SUMMARY PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES 34 3.1. Disability is both a "lens" through which programs which have aimed to reduced the incidence broader health policy issues can be viewed, as well of disability in India. This is followed by a review of as a specific set of needs of people with disabilities evidence on health seeking behavior of PWD. A section that health policy and systems need to address: Both on the health care system, and both public and non- prevention and management of disability are core issues governmental interventions for treatment of PWD in general in access to health. It is difficult to separate follows, before conclusions and recommendations. the interventions that are disability-specific from those that are related to health of the population in general. A. Causes of Disability in India In this sense, disability is a lens through which health 3.4. Chapter 1 reviewed evidence on the incidence of policy issues can be viewed. However, when it comes disability in India by disability type. It was seen that there to diagnostic, screening and rehabilitative services for remains considerable uncertainty on the relative shares PWD, a disability-specific dimension enters health policy, of different disability types in the overall composition particularly when institutional structures need to be of the disabled population. This section focuses in more reformed to improve access and outcomes for PWD. detail on the causes of different types of disability, using 3.2. In much of the world, the literature on health primarily NSS sources. While NSS data are subject to the and disability is typically framed within a medical caveats noted in Chapter 1, this remains a useful source model: India is no exception. Thus, much of the literature of insight. on disability and health in India sees disability within a disease framework. Hence, PWD are viewed as "patients" Age of onset of disability in need of "treatment". Empirical evidence also comes 3.5. Chapter 1 provided cross-disability data on predominantly from the medical discipline, focusing average age of onset of disabilities, noting the "double on causes of disability and clinical trials; although some hump" of disability onset, first at our shortly after birth recent studies have focused on poverty correlates and then in the 50-60 year old cohort. However, cross- and social stigma issues that affect PWD. There is little disability averages conceal as much as they reveal. The information on access to health for PWD or their general figures below provide disability-specific data on age at and disability-specific health needs ­ except whether onset by major disability categories. The age profile of "treatment" was sought for the disability. Moreover, data disability onset varies sharply by category of disability. do not allow an analysis of supply and quality of services Some notable patterns stand out: available to PWD, and the extent to which this affects demand. · onset of mental disabilities is concentrated in childhood and 20-30, resulting in the lowest 3.3. This chapter explores health issues for PWD.50 The average age of onset. While more analysis is needed, structure is as follows: Section A focuses on the causes it is assumed that MR is more focused on the earliest of disability in India and implications of these for public years and mental illness becomes more pronounced policy. It includes a brief discussion of the institutional in young adulthood. issues with respect to heath services for both prevention and treatment of disability. This is followed by a section · in contrast, visual disabilities are much more on the preventive aspects of disability policy, and public associated with ageing, with easily the oldest 50 The chapter draws on background papers by Das (2006) and Puri (2005). 35 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES AGE AT ONSET OF MENTAL DISABILITY .005 .01 .015 .02 .025 AGE AT ONSET OF VISUAL DISABILITY .03 Density .02 Density .01 0 0 0 20 40 60 80 100 0 20 40 60 80 100 Age at onset Age at onset Based on Das (2006), using NSS 58th round Based on Das (2006), using NSS 58th round AGE AT ONSET OF HEARING DISABILITY AGE AT ONSET OF SPEECH DISABILITY .02 .005 .01 .015 .02 .025 .015 Density Density .01 .005 0 0 0 20 40 60 80 100 0 20 40 60 80 100 Age at onset Age at onset Based on Das (2006), using NSS 58th round Based on Das (2006), using NSS 58th round AGE AT ONSET OF LOCOMOTOR DISABILITY communicable causes, and increasing importance of injuries/accidents) are important, design of appropriate interventions also needs to focus on disability-specific .02 profiles of causes. Critical periods for intervention for .015 locomotor and speech disabilities are particularly in Density early childhood. For mental disabilities, the critical .01 period for MR is also early childhood, while for mental .005 illness, adolescence and early adulthood are key. For hearing impairments, screening throughout life seems 0 0 20 40 60 80 100 Age at onset important, but especially as people age, and for visual Based on Das (2006), using NSS 58th round disabilities, the focus period is during a person's 50s and early 60s. Overall, the importance of early identification mean age of onset. While hearing disabilities and intervention can not be stressed enough. The exhibit a more pronounced dual peak, they are also specific conditions are discussed in turn below. on average subject to later average onset. 3.7. The main causes of visual disabilities are · both locomotor and speech disabilities are more presented in Table 3.1, and are primarily age-related, concentrated in younger ages also, with the highest with cataract and other age-related issues being the onset in the early years of life in both cases, and a chief causes. The major share of visual disability is thus more noticeable second wave of onset for speech preventable and occurs due to lack of treatment. In a disabilities around age 60. national estimate, Dandona et al estimate that almost two-thirds of blindness is preventable or treatable. If 3.6. The age profile of onset reflects the differing there is no change in the current trend of blindness, structure of causes by disability category. While the study estimates that the number of blind persons aggregate trends in disability cause discussed in in India would increase to 24.1 million in 2010, and to Chapter 1 (i.e., transition from communicable to non- 31.6 million in 2020. If effective strategies are put in 36 TABLE 3.1: CAUSES OF VISUAL DISABILITIES (FOR TABLE 3.3: CAUSES OF LOCOMOTOR DISABILITY - 2002 HEALTH AND PEOPLE WITH DISABILITIES INDIVIDUALS WITH SINGLE DISABILITY (I.E., VISUAL ONLY) Cause Percent Cause Percent Polio 30.9 Cataract 23.4 Burns and Injury 28.5 Old age 23.0 Other illness and disease 12.7 Corneal opacity/other eye errors 20.0 Stroke 6.3 Not Known 9.8 Not Known 4.5 CHAPTER 3: Other 5.6 Other 4.5 Glaucoma 5.3 Arthritis 3.0 Burns or injury 4.7 Old age 2.8 Small pox 4.1 Leprosy 2.2 Medical/surgical intervention 2.6 Medical/surgical intervention 2.2 Childhood diarrhea 0.7 Cerebral Palsy 2.1 Sore eyes after first month 0.9 TB 0.4 Source: Das (2006), based on NSS 58th round. Source: Das (2006), using NSS 58 round th place to eliminate cataract, blindness in 15.6 million related to other public health issues, and that increasing persons would be prevented by 2020, and 78 million access to better quality care is an important step towards blind person-years. Similarly, if effective strategies are reducing disabilities. This has implications not only for implemented to eliminate refractive error blindness and prevention but for diagnostic facilities and technology, corneal disease/glaucoma, another 7.8 million persons and referral and rehabilitation services. would be prevented from being blind in 2020, and 111 million blind person-years. 3.9. Locomotor disability is the category which is undergoing the most rapid change in causal profile. 3.8. The major cause for both speech and hearing As Table 3.4 shows, for the current group of locomotor disabilities is illness and disease, or in the case of disabled people, polio remains the highest single cause, speech disability, is not known. In addition, over 21 accounting for almost a third of all locomotor disability. percent of all hearing disabilities are due to old age. The However, burns and injuries are also a major share, and importance of non-specific causes in these categories once more non-specific causes account for over 20 (other illness, other, not known in the case of speech percent of total. As will be seen, progress in reduction of disabilities) highlights that disability is intrinsically new polio cases has been a public health success stories TABLE 3.2: CAUSES OF HEARING AND SPEECH DISABILITIES - 2002 Percent Cause - Hearing Disability Cause - Speech Disability Percent 21.3 Old age Voice disorder 12.6 18.6 Discharge Paralysis 11.9 8.7 Other Other 8.3 5.3 Burns and injury Burns and injury 0.9 2.1 Noise Cleft palate 4.5 1.6 Medical/surgical intervention Medical/surgical intervention 3.8 0.7 Rubella Mental illness 2.8 0.01 Not Known Hearing Impairment 1.6 23.0 Other illness Old age 1.1 Other illness 25.2 Not Known 21.7 Source: Das (2006), based on NSS 58th round. 37 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES in India in recent years, so that the causes of locomotor come into focus after the Bhopal gas leak, earthquakes disability are shifting significantly. in Marathwada and Gujarat, and more recently the 2004 tsunami. TABLE 3.4: CAUSES OF MENTAL DISABILITY - 2002 3.11. A further cross-disability issue that is likely to Other 41.65 assume greater importance over time is the prevalence Not known 36.31 of accidents and injuries as a cause of disability. Table 3.5 Serious illness in childhood 11.97 provides insights by gender from 2002 on where such Head injury in childhood 3.83 accidents occur. Overall, using NSS sources, accidents and injuries have some role in around 18 percent Heredity 3.17 of all disabilities. There are, however, major gender Pregnancy/birth related 3.01 differences in the source of such injuries. For males, over Source: Das (2006), using NSS 58th round 35 percent of these injuries are at the place of work, while for women, the overwhelming proportion ­ 60 percent - 3.10. As noted in Chapter 1, estimates of mental are in the home. disabilities in India remain particularly problematic. This 3.12. In addition, around 27 percent of male and is driven by various challenges, including identification 14 percent of female burns and injuries happen in skills of health providers, families and surveyors, and transport accidents, confirming data from other sources stronger social stigma attached to such conditions. of a major impact of road traffic accidents on disability in With such a caveat, the NSS-identified causes of mental India. A recent study estimated that 1.2 million people disabilities are presented in Table 3.4, and more than are seriously injured and around 300,000 permanently any other category highlight that causes of mental disabled in road traffic accidents each year in India, disabilities remain little understood in India.51 As noted, often through failure to take simple precautions such a research by mental health organizations has found much wearing seatbelts or wearing motorcycle helmets.55 In higher rates of mental disabilities with, for example, a terms of economic impact, a 2002 Planning Commission meta-analysis estimated the prevalence of mental illness report estimated that road accidents cost India around Rs. at 5.8 percent of the population.52 Equally, suicide rates 55,000 crore in 2000 prices. Just as importantly, the trends in India have risen significantly since the 1980s, from are discouraging. A recent WHO/World Bank international 7.5 to 10.3 per 100,000 population between 1987 and report found an almost 80 percent increase in road traffic 1997. 53 Suicide rates also have notable state variations, fatalities in India between 1980 and 1998.56 The largest with pockets of high prevalence for suicide, for example, group of such fatalities are pedestrians, among whom the in Kerala, West Bengal and Tamil Nadu.54 Addressing poor are likely to be over-represented. This can be seen mental health issues during and after disasters has also in Table 3.6 for Delhi, Mumbai and on highways from 11 TABLE 3.5: PROPORTION OF ROAD DEATHS BY TYPES OF USER AND LOCATION Location Type of road user (%) Lorry Bus Car TSR MTW HAPV Bicycle Pedestrian Total Mumbai 2 1 2 4 7 0 6 78 100 Delhi 2 5 3 3 21 3 10 53 100 Highways 14 3 15 - 24 1 11 32 100 Source: Mohan (2002), cited in WHO/World Bank (2004). TSR = three wheel scooter taxi; MTW = motorized two wheelers; HAPV = human and animal powered vehicles. Highways from 11 locations (not including tractor fatalities). 51 As Gururaj and Isaac point out, psychiatric epidemiology suffers from particular methodological and definitional problems not only in India, making comparability of research more challenging. 52 Reddy and Chandrashekar (1998). 53 World Mental Health Report (2001). 54 Puri (2005). 55 Ganveer et al (2005). Such estimates are supported by regional studies indicating that traffic accidents as a share of all accidents almost tripled between 1986 and 1998. See also Chacko et al (1986) and Annamali and Chinnathambi (1998). 56 See WHO/World Bank (2004). The report also estimates the economic costs of road traffic accidents in Asia as a whole at around 1 percent of GNP, with regional data indicating that this economic impact rises with country income levels to around 2 percent of GNP in highly motorized countries. 38 Indian locations. Micro-studies confirm that the poor are of disability, and the unclear genesis of some disabilities, HEALTH AND PEOPLE WITH DISABILITIES at higher risk of pedestrian injuries, and that a high share make it difficult to define comprehensively the scope of of injuries of pedestrians is due to buses.57 interventions and public policies that impact the level and nature of disability in India. This section therefore 3.13. No credible data are available to ascertain the focuses selectively on a sub-set of public interventions. outcome of accident survivors; it is generally perceived Some of them, such as India's campaign against polio, can that outcomes in patients with single system injury be considered success stories of the public health system. (e.g., musculoskeletal trauma) have improved, but not Others, such as comprehensive immunization, display for polytrauma. There is a high mortality rate amongst CHAPTER 3: trends which are worrying both in terms of disability and those with multi-system injuries, due to the primitive mortality. A common issue with many preventive public state of trauma-care systems, lack of pre-hospital care health initiatives is the mode of national campaigns and and inadequate critical care, especially in rural and small how these work in a context of increasingly devolved urban areas.58 responsibility for various aspects of the health delivery system. TABLE 3.6: PLACE OF INCIDENT FOR BURNS AND INJURIES BY SEX FOR PWD ­ 2002 Male Female Immunization Programs Agricultural field 18.4 9.4 3.16. India has long had vertical programs that address Mines 0.6 0.4 comprehensive immunization according to international Factory 3.6 0.9 norms of the Universal Programme for Immunization. Other work site 12.8 4.8 Immunization affects mortality, morbidity and disability. Transport accident 26.9 13.8 Measles in particular is associated with blindness, and Home 24.4 59.3 other vaccine preventable illnesses predispose infants Other 13.2 11.1 and children to other diseases which may in turn cause Source: Das (2006), using NSS 58th round long-term disability. Recent data from the Reproductive and Child Health (RCH) surveys show what may be a 3.14. While the above analysis provides some insights disturbing trend (Figure 3.1). While coverage of polio into the medical, environmental and social causes of has progressed remarkably (see below), there appears disability, it is equally important to understand what to have been an overall decline in immunization rates weaknesses in health delivery (and other) systems at the national level, with the most serious decline contribute to disability outcomes in India. It is clear that evidenced in the north eastern states.59 On a national effective interventions need to be across sectors beyond basis, full immunization coverage has declined from health, including nutrition programs for children and 54.2 to 48.5 percent in only around 5 years, a fall from mothers, workplace and home safety, traffic management, an already low base. While a number of states have water and sanitation, and other environmental areas. sustained or slightly increased high coverage rates (e.g., Sections B and C explore this in more detail for both TN, Punjab, Karnataka), there are worrying declines in preventive and treatment/rehabilitation services. These coverage rates in both the NE and some larger states are preceded by a discussion of some elements of health (e.g., MP, UP, J&K, Rajasthan). However, a caveat is in seeking behavior among PWD. order. NFHS data from 1998/99 for a number of states ­ including several poor states - give dramatically different coverage rates to RCH-1 data (e.g., UP, Orissa, B. Prevention of Disability MP, Rajasthan, Assam and AP), suggesting that issues of 3.15. A large proportion of disabilities in India are sampling need careful examination in assessing trends. preventable, including disabilities that arise in the Nonetheless, it seems reasonable to say that India's circumstances surrounding birth, including maternal immunization performance has at best stagnated in conditions, from malnutrition, and from causes such as recent years and most probably declined in a sizeable traffic accidents or workplace injuries. The many causes portion of the country. 57 Persaud et al (2005), which documents an unmatched case control study from Delhi. 58 Joshipura (2004). 59 Both the scale of declines in the NE and comparisons to NFHS rates for 1998-99 suggest that issues of sampling in RCH data seem worthy of further exploration. 39 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES FIGURE 3.1: FULL IMMUNIZATION COVERAGE RATES BY STATE, 1998/99 AND 2002/04 100 90 80 % of children aged *-* 70 60 50 40 1998/99 30 20 2002/04 10 0 Maha Mani ArunP Assam Bihar Delhi Goa Gujarat Haryana HP Karn Kerala MP Meg Miz Naga Punjab Raj TN Tripura UP WB India Orissa J&K Sik Source: RCH surveys. Polio eradication report that in India there were 135 polio cases with onset of paralysis in 2004, and for 2005, India reported only 66 3.17. The above data relate to full coverage polio cases with onset of paralysis for the year: mostly in immunization. However, with respect to disability, Bihar and UP. This compares to several thousand cases per the story of recent years has positive elements as well, year as recently as 1998, and much higher rates previously perhaps the most high profile being progress against (Figure 3.2). At the same time, numbers went up again polio through the Pulse Polio Immunization campaign in 2006, in part due to the cyclical nature of the disease, (PPI). In order to reach the global goal of zero incidence which tends to peak in 3-4 year cycles (and within each of polio, a strategy to intensify PPI was adopted in 1999- year in the earlier months of the year). From only 66 cases 2000. It consisted of four nation-wide PPI rounds in late in 2005, there were 674 cases in 2006, mostly in UP (546 2000-early 2001; followed by two sub-national rounds in cases) and Bihar (61 cases), though date for the first quarter Assam, Bihar, Gujarat, MP, Orissa, Rajasthan, UP and West of 2007 indicates better outcomes, with only 44 cases to Bengal, plus routine immunization, especially in poor end March.60 The polio laboratory network remains one performing States. of the strongest components of India's polio eradication 3.18. Results of PPI in the last decade have been program, providing significant support to vaccine and dramatic, though the nature of the virus also results in surveillance efforts. The laboratories provided rapid results cycles of new cases. The Centers for Disease Control (CDC) in 2004, even though more than twice as many specimens FIGURE 3.2: NUMBER OF POLIOMYELITIS CASES, BY MONTH AND YEAR ­ INDIA, JANUARY 1998- MAY 2005 Number of poliomyelitis cases, by month and year - India, January 1999 - May 2005* 900 NIDs ¦ 800 SNIDs¶ 700 600 Introduction of mOPV1* in SIAs** Cases 500 Introduction of mobile transit terms during SIAs Enhanced acute accid paralysis surveillance 400 initiative to strengthen routine immunization program 300 200 100 0 1998 1999 2000 2001 2002 2003 2004 2005 Month and year * As of June 18, 2005 ¦ National Immunization Days $ Subnational Immunization Days ¶ Monovalent oral poliovirus vaccine type 1. Source: MMWR Weekly, July 2, 2005/54(26); 655-659, CDC ** Supplementary immunization activities Accessed on Jan 16, 2005 from http://www.cdc.gov/mmwc/preview/mmwchtrn1/mm5426a3.htm 60 An excellent monitoring site is the National Polio Surveillance Project, a collaboration of GoI and WHO started in 1997. See www.npspindia.org. 40 were tested as in 2003. The authorities are optimistic that mobile eye camps and performance of cataract surgery. HEALTH AND PEOPLE WITH DISABILITIES polio can be eradicated in India, though the fact that it Most cataract operations in rural areas are conducted is endemic raises major challenges in sustaining recent through mobile camps. Primary health centers have efforts.61 The continued commitment to polio eradication also been equipped with ophthalmic equipment and by is clear in the FM's 2007/08 budget speech, which outlines posting paramedical ophthalmic assistants. However, by a targeted strategy in high risk districts of UP and Bihar, its own admission, the Program's main challenges is to and use of monovalent vaccine which is more effective in expand activities beyond cataract surgeries to focus on combating the strain of polio which continues to cause other causes of blindness, improve quality of services CHAPTER 3: most new cases. A second question raised by some public and post-surgical follow-up, strengthen human resource health players is the sense that other immunization and development and outreach/public awareness. To this public health initiatives may have suffered as a result of end, the Union Cabinet in 2008 approved revisions in the the intense focus on polio eradication. Programme to include other causes of blindness such as 3.19. National Blindness Control Programme (NBCP): diabetes and glaucoma, and also increased funding to Rs. The NBCP was started in 1982 and is one of the largest 1,250 crore for the 11th Plan period to cover new initiatives disability prevention programs. It undertakes activities like such as 3,000 vision centres for screening and eye banks general eye care, cataract surgery, correction of refractive and donation centres. 62 errors etc. However, cataract surgery is the main indicator 3.21. National Leprosy Eradication Programme: used to evaluate success, and annual outcomes in terms of Started initially in 1954-55 as the National Leprosy Control surgeries have expanded impressively since the mid-1980s Programme, the increased focus led to its renaming as the (Table 3.8). At the same time, unit costs have risen steeply, National Leprosy Eradication Programme (NLEP) in 1983 not only due to general price inflation, but also due to use with the objective of eliminating leprosy (i.e., reducing of more costly technology such as intra-ocular lenses and the caseload to less than one case per 10,000 population). more advanced eye theatres. In 1993-94, the first National Leprosy Elimination Project TABLE 3.7: CATARACT SURGERIES UNDER THE NATIONAL was started on a national scale, using multi-drug therapy BLINDNESS CONTROL PROGRAMME (MDT), strengthening existing services, intensive health Year Cataract Expenditure education, trained manpower development, disability Surgeries (Rs. in crores) prevention and care including reconstructive surgery. The (lakhs) second phase of the project decentralized implementation 1985/86-1989/90 58.78 28.91 to States/UTs and districts, and integration into the overall 1990-91-1994/95 83.9 93.27 health system. Recently there have been nationwide 1995-96-1999/00 114.52 333.32 Modified Leprosy Elimination Campaigns with intensified 2000-'01 36.7 109.7 community IEC and better outreach. 2006-07 50.37 2007-08 54.04 3.22. Progress in leprosy reduction has been Source: Ministry of Health 2005 impressive. In 1981, India had a prevalence of 57.6 leprosy cases per 10,000 population. As of early 2004, 3.20. The NBCP, like other vertical programs functions at this had fallen to 2.44 cases, and by April 2007 had fallen the apex through a National Programme Management to 0.83 cases per 10,000 population, though with strong Cell in MoH, State Ophthalmic Cells, tertiary Regional statewise concentration in Jharkhand, Chandigarh, Institutes of Ophthalmology and Eye Hospitals, and at the Bihar, and West Bengal.63 Official estimates are that 487 district level through District Blindness Control Society districts (or almost 80 percent) had eliminated leprosy by and District/Sub-District Hospitals. In order to address early 2007 with 29 States/UTs having eliminated leprosy problems of outreach in rural areas, the Programme has and most other States/UTs close to leprosy elimination tried to expand accessibility of ophthalmic services. It (defined as less than 1 case per 10,000). GoI has now sponsors central and district mobile units which conduct identified 19 districts as priority focus for further action.64 61 A further debate relates to the vaccination strategy of GoI, which relies on oral polio vaccine (OPV) rather than the more costly alternative inactivated polio vaccine (IPV). See Paul (2006) for a discussion. 62 See Hindu online, October 6, 2008. 63 At the same time, it is important to note the change in the past few years in how a "case" of leprosy is defined, which makes figures over time not comparable and is likely to understate rates relative to past. 64 See NLEP website, http://nlep.nic.in/data.html. 41 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES 3.23. In other preventive programs however, the of all households consumed iodized salt in the period authorities have struggled to find effective modes 1998-2004.66 However, IDD is a problem in every part of of intervention. An example is the National Filaria India. Of 286 districts in the endemic states surveyed by Control Program (NFCP).65. Launched in 1955, official the Ministry of Health and Family Welfare in 1998, IDD reviews revealed very limited impact. The program was was endemic in 242.67 Coverage of these programs is then withdrawn from rural areas. A revised strategy for intrinsically related to coverage of other maternal and control in endemic states was launched in 1996-97. Four child health programs and draws attention to the links main areas were targeted under the revised strategy: between overall health goals and prevention of disability. (i) single day mass drug administration; (ii) referral In this regard, a positive development in 2005 was the re- services at selected centers; (iii) Information-Education- banning of non-iodized salt by GoI. Communication (IEC) in the community; and (iv) anti 3.26. Children from poor households are at greater risk vector measures in all urban areas. of malnutrition-induced disabilities. In addition, CWD 3.24. Despite these efforts, only about 11 percent of may also be at greater risk of malnutrition if their there those living in endemic areas of India fall within an active is relative neglect of their feeding, and/or their disability control program, with particular shortfall in rural areas. contributes to problems with feeding. Findings of a study The major constraints of the program are: (i) detection exploring the impacts of malnutrition among children in of carriers by night blood surveys, which is costly and the Dharavi slum of Mumbai show:68 poorly accepted by the community; (ii) poor perception · meanweightforageofchildrenwithdisabilitieswas of the disease and the benefits of the control program; significantly lower compared to their siblings; and (iii) drug compliance was not at a level to interrupt transmission in many states. · CWD had significantly lower mean hemoglobin levels compared with siblings; and Prevention in the general health care system · CWD with feeding difficulties were significantly more likely to be malnourished using all indicators, 3.25. The above experiences indicate some success compared to disabled children without feeding in India is reducing the incidence of disabling difficulties. communicable diseases. However, successes in reduction of some communicable diseases have not 3.27. A second critical area of the general health system been matched by progress in the broader public health that has major impacts on minimization of disability is system in several key areas which have significant reproductive, maternal and child health. This relates not impacts on disability. One example is in programs only to young children themselves but also to mothers. addressing micronutrient deficiencies, where India There is a large body of literature that underscores the maintains the "South Asian curse" of stubbornly poor importance of maternal factors such as education, nutritional outcomes for its population. Irreversible nutrition and health care for child health outcomes. debilities can arise from both mother's anemia and However, access to care during pregnancy and delivery in nutritional deficiencies in childhood, and children is poor in India. In the three years preceding India's from poor families are at particular risk (e.g., vitamin National Family Health Survey 1998-99 (NFHS-2), only 35 A deficiency is a cause of blindness; iodine deficiency percent of pregnant women received no antenatal care: disorders (IDD) are preventable causes of mental a marginal improvement on the 36 percent in the 1992- retardation). National programs to deal with iodine, iron 93 NFHS.69 The survey showed that the women who and Vitamin A deficiency have been in existence for some failed to seek care tended to be older (ages 35 to 49), time. Despite this, UNICEF reports that approximately with a high number of previous pregnancies, and were only 45 percent children from 6-59 months were covered illiterate and socio-economically disadvantaged. Other by Vitamin A supplementation in 2003 and only half micro-studies confirm these patterns.70 Such maternal 65 India is said to contribute about 40 percent of the total global burden of filariasis and account for about 50 percent of those at the risk of infection. 66 UNICEF (2006). 67 Tiwari et al (1998). 68 Yousafzai et al (2000) 69 International Institute for Population Sciences (IIPS) and ORC Macro, National Family Health Survey (NFHS-2) 1998-99 70 RamaRao et al (2001) 42 characteristics tend also to be associated with higher have been more limited. Recently, GoI has produced a HEALTH AND PEOPLE WITH DISABILITIES risks of disability in children. The UP and TN survey also draft National Road Safety Policy which sets a number provides support for the importance of ante-natal care. of positive directions for action. However, execution of Mothers of CWD were almost three times more likely to policy is largely a matter for the states, and concrete have had difficulties during pregnancy, indicating a much action has been lacking in many cases. Kerala provides higher than average need for ante-natal care. They were a positive example of state-level action, which addresses also significantly less likely to have accessed government a range of factors in road safety, with a state-level Road allopathic ante-natal care when they did (and more likely Safety Action Plan developed, and initial implementation CHAPTER 3: to have used public traditional or private providers). begun through initiatives such as a Good Practice Manual of Public Education in Road Safety. Pilots are under 3.28. Disability arising from maternal causes is difficult discussion in the Cochin/Ernakulam area for model road to assess and estimate, but it is well-known that low- safety programs including promotion of seat belt and birth weight, prematurity, maternal anemia, and helmet use. There has also been focus on police accident malnutrition increase the risk of disability among babies. reporting practices, vehicle fitness initiatives, and For example, neural tube defects (NTD) a condition emergency medical response to accidents. Tamil Nadu that leads to considerable and irreversible disabilities is also taking action such as mapping of "accident black in newborns can be prevented by including folic acid spots", with planned investments in both improving supplements in pregnant women's diet.71 The prevalence road safety and in medical response capacity in high-risk of NTD is reported to be 3.63 per 1000 live births and the areas. highest being in the northern states of Punjab, Haryana, Rajasthan and Bihar.72 C. Curative and rehabilitative health 3.29. Apart from impacts on the child, poor access interventions and PWD to quality services can result in a range of disabling 3.31. As noted in Chapter 7, the health sector is the one conditions for mothers themselves, some of which are where the PWD Act makes the weakest incremental easily treatable conditions such as fistula which can commitments in public policy. This is for two main become disabling if not attended to.73 Information on reasons. Firstly, it focuses mainly on prevention and early women with disabilities (WWD) and their reproductive detection of disabilities, and raising of public awareness health needs in India is limited. 74Among the most on these issues. It does not make specific additional severe of these disabilities are the conditions resulting commitments on treatment and rehabilitation of PWD. from obstructed labor, conditions virtually unknown Secondly ­ in contrast to areas such as education and in countries where Caesarean sections are easily employment ­ the Act's provisions on health are in the available. Other lingering problems may include form of unenforceable commitments due to the rider anaemia, incontinence and sterility. Obstetric fistulae "within the limits of [governments'] economic capacity disproportionately affect very young and very poor and development". As a result, respect to health issues women. Internationally, girls under 15 are 25 times more and PWD, the Act remains largely aspirational even in likely to have critical complications related to pregnancy principle with, mainly outlining the type of prevention than women in their 20s. 75 and early detection initiatives that states should seek to implement. Prevention outside the health care system: road traffic initiatives 3.32. Both policy and practice therefore indicate that 3.30. As noted, accidents are a major cause of disability, the bulk of both prevention and treatment of disability and traffic accidents account for a significant share of will continue to happen as part of the broader public all accidents. While this is increasingly acknowledged in and curative health delivery systems. Equally, access to India, efforts to address the epidemic of traffic accidents health for PWD will be characterized by a combination 71 Luneley et al (2000). 72 Verma (2000). 73 Every minute worldwide, more than 30 women are seriously injured or disabled during labor, thus rendering vast numbers of women in the developing world physically and socially disabled. For every woman who dies from complications of pregnancy, between 30 and 100 more live with painful and debilitating consequences. UNFPA. 74 On links between reproductive health and disability and its application to India, see Das (2004). 75 See Das (2006). 43 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES of elements common to all people (e.g., the effects to be opened during the 11th Plan period, with a further of household income on access to care), as well as 101 districts to be covered for a total of 300 by the end of disability-specific needs and issues of access. There is the Plan period, with a special emphasis on under-served thus a complex interaction of supply and demand side areas. The objectives of the DDRC include surveying the factors that come into play. Figure 3.3 sets out some of disabled population, prevention, early detection and the linkages. medical intervention and surgical correction, fitting of artificial aids and appliances, therapeutic services 3.33. This section explores specific elements of the ­ physiotherapy, occupational therapy and speech health delivery system which are of particular relevance therapy, provision of educational services in special to PWD. This includes initiatives that are specific to PWD and integrated schools, provision of vocational training, in both the public and non-governmental/community job placement in local industries and trades, self- sectors (e.g., disability certification), and some where employment opportunities, awareness generation for interactions of PWD with the general health delivery the involvement of community and family to create a system may raise issues above and beyond those of the cadre of multi-disciplinary professionals to take care of general population. major categories of disabled in the district. Dedicated PWD health services 3.35. There are four Regional Rehabilitation Training 3.34. Generally, the focus of PWD-specific public Centers (RRTC) that function under the DRC scheme interventions has been on rehabilitation. Technological and which provide training to village level functionaries, support on rehabilitation is provided by the five DRC professionals, and State Government officials. National Institutes on disability, set up in the 1970s and They also conduct research in service delivery and low 1980s.76 The mix and PWD coverage of services by the cost aids production. Apart from developing training Institutes is presented in Table 3.9, which have serviced material and manuals for field use, RRTCs also produce just under 2 million PWD in their existence. In recent material for creating community awareness. A National years, India has been placing an increased emphasis Information Center on Disability and Rehabilitation on social and community-based approach. In early was also established in 1987 to provide a database for 1995, the Government launched the District Disability comprehensive information on all facilities and welfare Rehabilitation Center (DDRC) Scheme as a model of services for the disabled within the country. It acts as an comprehensive rehabilitation services to rural PWDs. As agency for awareness creation, preparation/collection of 2008, 199 DDRCs had been sanctioned but only 128 and dissemination of materials/information on disability had been made operational. The remainder are intended relief and rehabilitation. Health and Disability FIGURE 3.3: DEMAND AND SUPPLY SIDE LINKAGES IN HEALTH AND DISABILITY DEMAND-SIDE FACTORS CONSTRAINTS SUPPLY-SIDE FACTORS Individual level - lack of - General problems in health service awareness, and/or physical and delivery for all nancial ability to demand, lack - Focus on prevention of certain of voice. OPPORTUNITIES disabilities Household and community level - Limited provider knowledge of - stigma, stereotypes, poverty, disability management and low priority to PWD. Strong Policy Framework inadeauate systems of referral Sub-national and national level - Legal and institutional framework - Limited outreach - services low priority to disability in an Self-help groups of PWD con rmed to urban areas already overburdened health Civil society advocates for PWD - Logistics - Inadequate transportation system donor attention and resources and physical access Source: Das (2006) The National Institute for the Visually Handicapped, Dehradun (1979); the National Institute for the Orthopaedically Handicapped, Kolkata (1978); National Institute for the 76 Hearing Handicapped, Mumbai (1983); National Institute for the Mentally Handicapped, Secunderabad (1984) and National Institute for Multiple Disabilities (being set up in Chennai). The two apex level Institutes are the National Institute of Rehabilitation, Training & Research, Cuttack (1984) and the Institute for the Physically Handicapped, New Delhi (1976). 44 TABLE 3.8: COVERAGE OF NATIONAL INSTITUTES FOR PWD BY TYPE OF SERVICES HEALTH AND PEOPLE WITH DISABILITIES Institution Special Educators Rehabilitation Extension Clinical Total PWD Trained Services Services Services served National Institute of Hearing 2,536 23,452 11,077 175,893 212,958 Handicapped National Institute of 31,804 14,445 54,071 18,923 119,243 Mentally Handicapped NI of Orthopedically - 23,487 65,083 221,804 310,374 CHAPTER 3: Handicapped National Institute of Visually 5,972 325,771 83,463 24,128 439,514 Handicapped Institute for the Physically 619 22,090 47,201 65,652 135,562 Handicapped NI of Rehabilitation Training 415 26,369 1,863 330,437 359,089 and Research DDRC/Regional Rehab - 26,614 149,583 204,286 380,483 Training Centers Total 41,346 462,228 412,526 1,041,123 1,957,223 Source: Asia Pacific Development Center on Disability India Country Profile. 3.36. State governments have their own policies and features, i.e., to: (i) deinstitutionalize medical care, schemes for PWD as well. These include institutes that working with PWD in their communities; (ii) expand PWD are run by state governments and grants to NGOs that access to rehabilitation services; (iii) demedicalize social access schemes of the state governments. The issue of responses to disability and thereby help reduce social access to health services that are not rehabilitative in stigma; and (iv) shift investments away from curative nature has been addressed only obliquely. For instance, to preventive measures. The concept is institutionally the RCI has a program for the training of medical officers flexible and can be operationalized by communities, in Primary Health Centers. NGOs and government, separately or in partnerships. Local level identification, training and technology 3.37. Perhaps the most interesting set of services development is encouraged, involving not only disabled being offered to PWD in India is Community-Based people and their families but teachers, healers and Rehabilitation (CBR), which has been effective in rural religious leaders. areas in addressing the primary care and therapeutic needs of people with PWD, but increasingly also 3.39. There is also significant community outreach addressing a much wider range of socio-eocnomic by hospitals and community institutions for the empowerment needs of PWD. A general description is disabled: Medical colleges, hospitals, schools of social provided in Box 3.1. Surprisingly, this mode of service work, and institutes of higher education often have a delivery is missing from the PWD Act though it receives community outreach programs for PWD. For instance, greater acknowledgement in documents such as the 11th the renowned cerebral palsy institutes started rural and Five Year Plan. CBR has been promoted with particular slum outreach programs in the 1970s, where their staff strength in south India, often with initial international provided community-based services to children with CP funding through NGOs. At the same time, CBR strategies and multiple disabilities. Several of these outreach units have constantly been evolving in response to changing developed into independent centers of community- needs, times and criticisms. Despite this, as of 2006 CBR based rehabilitation. Vidyasagar ­ an institute in Chennai had been implemented in only around 100 (of around for children with multiple disabilities ­ also has an 600 total) districts, and only 6 percent of villages have ongoing partnership with local hospitals and assessment coverage of rehabilitation services within 10 kilometres. centers to which it refers its clients. Its outreach has 3.38. While there is no single CBR model, most CBR also included links with specialized centers for specific initiatives share a range of common objectives and disabilities. 45 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES BOX 3.1: COMMUNITY-BASED REHABILITATION: THE BASICS CBR focuses on enhancing the quality of life for people with disabilities and their families, meeting basic needs and ensuring inclusion and participation . CBR is a multi-sectoral approach and has 5 major components: health, education, livelihood, social and empowerment. CBR was developed in the 1980s, to give people with disabilities access to rehabilitation in their own communities using predominantly local resources. A 2004 joint ILO, UNESCO and WHO paper repositioned CBR as a strategy for rehabilitation, equalization of opportunity, poverty reduction and social inclusion of people with disabilities. There are also a range of WHO publications and guides for more specific settings and elements of service delivery of CBR. The goals of CBR are to ensure the benefits of the Convention on Rights of Persons with Disabilities reach the majority by: 1. supporting people with disabilities to maximize their physical and mental abilities, to access regular services and opportunities, and to become active contributors to the community and society at large; 2. activating communities to promote and protect the human rights of people with disabilities for example by removing barriers to participation; and 3. facilitating capacity building, empowerment and community mobilization of people with disabilities and their families. CBR is implemented in more than 90 countries through the combined efforts of people with disabilities, their families, communities, and relevant governmental and non-governmental organizations working in disability and development. Involvement and participation of people with disabilities and their families is at the heart of CBR. WHO, in partnership with other UN agencies, collaborating centres and nongovernmental organizations is assisting these efforts by: · developing guidelines for CBR in partnership with other UN Agencies, nongovernmental organizations including Disabled People's Organizations. · conducting regional and country workshops to promote CBR and to develop national or regional CBR strategies. · supporting Member States to initiate or strengthen existing CBR programs. · developing a CBR Global database and network. Source: WHO website. http://www.who.int/disabilities/cbr/en/. D. Use of Health Services by PWD 3.41. NSS also allows examination of factors that affect the probability of PWD seeking treatment. The results 3.40. As noted, there is relatively limited research on are reported in Table 3.10, which reports the regression use of health services by PWD in India, and the drivers of results on the probability of seeking treatment among usage patterns. This section reports NSS data on overall specified categories of PWD relative to a series of use of health services by PWD and more specifically reference category PWDs.78 A number of interesting access to aids and appliances. It also includes evidence findings emerge: from the UP and TN village survey. Figure 3.4 outlines self-reported seeking of health treatment by PWD in the · being disabled from birth has a major impact on previous [year] for 2002.77 Overall, a large proportion of likelihood of having sought treatment, with those PWD ­ almost 80 percent ­ sought some treatment in disabled from birth more than 70 percent less likely the previous [year]. Disaggregating by state, a few points than those who acquired their disability later in life emerge: to have sought treatment; · overall, PWD in north-eastern states tended to · women are around 13 percent less likely than PWD have low use of health services, with Mizoram men to seek treatment; and Arunachal Pradesh less than half the national average usage among PWD; · higher levels of PWD education substantially · broadly, states that are lagging in overall supply increase the likelihood of seeking treatment; of health services also lag with respect to use of · PWD with locomotor conditions are the most likely services by PWD; and to have sought treatment, while the other extreme · the exception is Delhi, which has good services is those with hearing and speech disabilities, who overall, but less than fifty percent of PWD who are less than half as likely as locomotor PWD to have sought any treatment. sought treatment; 77 The word "treatment" in the NSS 58th round used to describe any assessment, diagnosis or rehabilitation that PWD have sought. 78 Given the sampling of NSS disability module, such an exercise can not be performed relative to the general population, but only among the PWD sample. 46 FIGURE 3.4: PROPORTION OF DISABLED SEEKING ANY TREATMENT 2002 HEALTH AND PEOPLE WITH DISABILITIES 100 90 80 70 60 50 CHAPTER 3: 40 30 20 10 0 ar i u a h a m h li M N a a U Pra sh N u p Ta jas al h W B esh y w h Is ya Ka as u Jh Ass al A eg arh Pr am im Ke ir M il n Ch rip d Pr sh sh t h g ka im m G na O s D ic ve ar am ha G a U l P oa rn htr ar es an err Po ar b a hr ra d an sa S i & P ee hd ar Ka ra es ar d D r H &D h nd m m tha t B ar h T an g l e u N la at ur a nd P n ra ah Na a de ad a ta Ra nc el en tt d ya na M ikk & ja ks ig nd Ha ris ar d M tisg ad ad al or ip ag nj es ih A ya ala ha kh la tt ra u u La nd ch iz a M Ch & ac m ra ru Ja H ad A D Source: Author's calculation using NSS 58th Found · predictably, ST/SC/OB status has a negative on why PWD did not access services. Some information is effect on likelihood of seeking treatment, with available on these questions from the UP and TN survey, ST in particular only half as likely to have sought from which results are presented in Table.79 In terms treatment. This can be considered to be picking up of type of service received, easily the dominant one broader income/welfare features which are not well was medication (in 86 percent of cases), with physical captured in the data; therapy the only other significant service (in 44 percent of cases). In terms of type of provider accessed, the · the north-east and eastern regions have easily results in Table 3.11 for PWD are not noticeably different the lowest likelihood of having sought treatment from non-PWD population in terms of public/private and by PWD. The northern region in contrast has the allopathic/traditional service providers. With respect to highest likelihood of having sought treatment; reasons for not accessing services, the dominant reasons · those in urban areas are 55 percent more likely are economic, and others are probably common to the to have sought treatment, reflecting not only the non-PWD population. However, around 16 percent of generally better access to health services, but also PWD report negative attitudes of providers as a reason the disproportionately worse situation with respect for not seeking treatment. Finally, the failure to note to disability-specific rehabilitation and treatment inaccessibility has to be interpreted with caution, as services offered in rural areas; these are local facilities which may be accessible by · PWD living with their parents are much more likely default (e.g., entire facility at ground level; no facilities to have sought treatment; and like toilets). · severalindicatorshadeitherstatisticallyinsignificant 3.43. The NSS does not provide information on what impacts on likelihood of seeking treatment, or types of health services PWD accessed, nor information significant but marginal impacts. These include the on why PWD did not access services. Some information age of the PWD, whether or not they are married, is available on these questions from the UP and TN household size, and amount of land possessed by survey, from which results are presented in Table.80 In the household. terms of type of service received, easily the dominant 3.42. The NSS does not provide information on what one was medication (in 86 percent of cases), with physical types of health services PWD accessed, nor information therapy the only other significant service (in 44 percent of 79 The findings are supported by evidence from the Unnati and HI study of Gujarat on health-seeking behaviour of people with disabilities. 80 The findings are supported by evidence from the Unnati and HI study of Gujarat on health-seeking behaviour of people with disabilities. 47 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES TABLE 3.9: PROBABILITY OF PWD SEEKING HEALTH TABLE 3.10: TYPE OF SERVICE ACCESSED AND REASONS FOR TREATMENT, 2002 NOT USING SERVICES BY PWD, UP & TN Variable Odds ratio of Type of facility used if healthcare facility accessed in the the probability last 3 months of ever seeking (multiple responses possible) treatment Public health facility ­ Allopathic 31.6% Individual Characteristics Private health facility ­ Allopathic 61.4% Female 0.87 Private health facility ­ Traditional 17.5% Age 0.99 Faith healer, tantric, or astrologer or other Any education up to primary 1.32 facility 7.1% Post Primary 1.64 Reasons for not using health facilities even if needed Disabled from Birth 0.28 (multiple responses possible) Disability Dummy (Locomotor as No services in area 52.3% reference) Transportation 20.5% Mental 0.75 Could not afford services 70.5% Visual 0.61 Building inaccessible 0.0% Hearing 0.43 Speech 0.43 Waiting time too long 13.6% Household Characteristics Providers don't treat people like me 15.9% ST 0.53 Other 2.3% SC 0.74 Source: UP and TN village survey, 2005. OBC 0.89 Household Size 1.02 are local facilities which may be accessible by default (e.g., Residence entire facility at ground level; no facilities like toilets). Urban 1.55 3.44. Clearly more work is needed on both the health- North 1.40 seeking behavior of PWD and the extent to which their South 1.16 problems in accessing decent services are similar to East 0.78 those of the general population, or have specific features West 1.14 NE 0.78 above and beyond that such as attitudinal or physical Living Arrangements (Living w/ access problems. One specific service that is important Parents as reference) for many PWD is access to aids, appliances and assistive live_alone 0.59 devices. Evidence on this is presented in Table 3.12. live_spouse 0.77 Only just over 20 percent of PWD in the NSS 58th Round live_kids 0.62 had ever been advised on aids and appliances and live_other 0.66 less than 16 percent had acquired any such aids or Source: Das (2006), using logistic regression. appliances.81 Of those who had acquired them, less than Notes: (a) all coefficients significant at the .001 level except NS=not significant; (b) Reference categories for dummy variables are upper caste, no education, central one fifth nationally had got them through a government region (UP/Uttaranchal, Bihar, Jharkhand), rural, currently not married or never scheme, with almost two thirds purchasing themselves. married, and male. This is shown in Figure 3.5, which also shows the cross- cases). In terms of type of provider accessed, the results state variation in Government assistance, with some in Table 3.11 for PWD are not noticeably different from states such as Chattisgarh having well over 40 percent non-PWD population in terms of public/private and TABLE 3.11: DISABLED INDIVIDUALS' ACCESS TO AIDS AND allopathic/traditional service providers. With respect to APPLIANCES reasons for not accessing services, the dominant reasons Percent are economic, and others are probably common to the Acquired 15.95 non-PWD population. However, around 16 percent of Not acquired 6.0 PWD report negative attitudes of providers as a reason Not advised 78.0 for not seeking treatment. Finally, the failure to note Source: Das (2006), using NSS 58th round. inaccessibility has to be interpreted with caution, as these 81 This excludes people with mental disabilities, who were excluded from the question. 48 FIGURE 3.5: PROPORTION OF AIDS AND APPLIANCES ACQUIRED BY SOURCE HEALTH AND PEOPLE WITH DISABILITIES 100 90 80 70 60 Percent Purchased 50 Assistance from Govt Assistance from NGO 40 Other CHAPTER 3: 30 20 10 0 h ks G h H sh im as tra es D p am u sh ha Ke ir Ch ip ry Ka sth h ru h a a Pr rh nd m r i Ra ad u & zo h es un l kh iu ra h Si ds ch di d U B nd tt r a Is m M As r ha m ra l a hr il issa A Ta O vel rn an Pr na Ja M P nga u ra b N Pr m an al Jh & at hd oa La es ti a e hi A C ag lay ac h m W ee ja es u Pr d an r A i r na an lan U Ha tak Tr er ar de ar D al ga m ha ja D G de ar ha M sga at ur ad l P ra ad ad lan N ra & sh eg sa M ch ip a Na & ya kki an jar t B el a ad ar ya w a h ag a tt i a ic K nd N m a Po D M H Source: Das (2006), using NSS 58th round. of aids and appliances provided by Government, while inadequately, not in small part due the manner in which in much richer states such as Gujarat that share was it is designed. Thus, assistance to buy aids and appliances only around 10 percent. The generally low awareness of fall within a range of individual beneficiary schemes that government schemes for free aids and appliances that often have serious implementation problems and low the numbers suggest is supported by results from the coverage. Due to this and other demand and supply side TN and UP survey, which found that close to half of PWD issues, coverage of rehabilitative services and aids is very respondents were not aware of such schemes (and that limited. In addition, systems for support and maintenance only 4 percent of all PWD had benefited from them). of assistive devices remain under-developed. 3.45. Access to free aids and appliances is currently within 3.46. Table 3.13 also presents results on probabilities the ambit of a social security system that functions very of accessing aids and appliances according to various TABLE 3.12: RESULTS ON PROBABILITIES OF ACCESSING AIDS AND APPLIANCES Variable Odds ratio of the Variable Odds ratio of the probability of acquiring probability of acquiring aids & appliances aids & appliances Individual Characteristics Residence Female 0.71 Urban 1.46 Age 1.02 North 1.40 Any education up to primary 1.23 South 1.10 Post Primary 1.56 East 0.95NS Currently Married 1.06NS West 1.36 Disabled from Birth 0.64 NE 1.38 Disability Type (Locomotor as Living Arrangements (Living reference) w/ Parents as reference) Mental live_alone 0.72 Visual 1.56 live_spouse 0.69 Hearing 0.55 live_kids 0.63 Speech 0.04 live_other 0.74 Household Characteristics Source: Das (2006), using NSS 58th round logistic regression. ST 0.63 SC 0.81 Notes: (a) all coefficients significant at .001 level except NS=not significant; (b) upper caste, no education, central region (UP/Uttaranchal, Bihar, Jharkhand), OBC 0.87 rural, currently not married or never married, male are reference categories for Household Size 0.99 dummy variables. 49 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES characteristics. While many of the results are similar the disability group Viklang Sangharsh Samiti attends to probabilities of seeking treatment, there are a few the district hospital every week on the day designated interesting differences: for certification and monitors doctors' attendance and completion of certification of all PWD who present.84 · female PWD are even less likely relative to male PWD to receive aids and appliances than they are to 3.49. To address the problems with district level seek treatment (this may also be a factor of the low certification, the authorities have also relied on a number of women technicians); camp-based approach to disability identification and · whilethosedisabledfrombirthstillhavelowerrates certification. This is a more accessible form, but still faces of access (around two thirds the level of other PWD), major challenges in both scale of outreach and human the situation is considerably better than for seeking resource capacity to go to scale. The shortcomings of treatment relative to PWD who acquired their the current identification and certification process disabilities later in life; and are brought out by results from the UP and TN survey, which found that 56 percent of PWD were not aware of · thedisability-specificprobabilitiesarequitedifferent the disability certification process, and that only around to those for seeking treatment, with visually impaired 21 percent were in possession of a PWD card. people substantially more likely to receive aids and appliances, and those with speech impairments 3.50. There is clearly a major challenge in developing having insignificant probability. mixed models of early identification of disabilities which are feasible in the face of supply side constraints E. Factors affecting PWD access to on qualified assessors. In this regard, many potential health care actors will be involved, from health care providers to anganwadis to the new asha workers under the National 3.47. This section outlines some of the more specific Rural Health Mission to schools and communities challenges faced by PWD in accessing decent health themselves. A key need will be simple tools that allow for services, some on the supply side of the system and screening and referral of at-risk infants and children. Pilot others on the demand side. exercises underway in a number of developing countries provide a model that is worthy of more systematic use 3.48. Disability identification and certification: A in India, and has already been effective on a localized critical element of accessing treatment and rehabilitation basis in India through initiatives such as Samadhan's services for PWD is identification and certification of community worker model of early screening in poor disability. The challenges in institutional coordination of areas of Delhi. The Ten Question Screening Instrument disability identification are discussed in Chapter 4. With developed by WHO based on extensive developing respect to certification, the standard model is to rely on country pilots is outlined in Box 3.1. assessment and certification by teams at district hospitals. The obvious shortcoming of the system is that rural 3.51. Attitudes and knowledge of health service populations will often have low knowledge of and access providers: As with education, provider attitudes to PWD to such teams (in addition to the costs associated with can have significant impacts on their access to health accessing district headquarters). In addition, evidence services. This is an area that to date has received less from Orissa indicates that arrangements for disability attention than attitudes among education professionals. certification do not always function well, with only just However, the limited available evidence indicates that over 10 percent of hospitals having disability certification provider attitudes seem to be a constraint on PWD schedules in place.82 This is supported by research from access to health services. Research from hospitals Rajasthan which found vacancies for essential medical throughout Orissa found that less than 40 percent of posts at districts facilities led to major problems with providers were aware of entitlements under the PWD certification.83 Faced with such challenges, disability Act, and that close to 40 percent of them considered NGOs have in some areas assumed a more assertive PWD as a burden. In Gujarat, many village health workers role vis-à-vis their district hospitals, e.g., in Rajasthan, did not know that mental illness and retardation were 82 Swabhiman (2004). 83 Bhambani (2005). 84 Bhambani, op.cit. 50 disabilities. The existence of attitudinal barriers receives supply chain from PHCs with community participation to HEALTH AND PEOPLE WITH DISABILITIES support from the UP and TN survey also, which found national level medical and rehabilitation services. There that 16 percent of PWD did not seek health services are, however, promising initiatives such as that in nine due to provider attitudes. In addition, field research districts of Gujarat, which aims to: (i) enhance knowledge from Karnataka and Rajasthan indicates a generally low and skills of primary health professionals in disability level medical awareness among health care providers identification and prevention so that they are able to of disability issues, in particular with respect to mental identify persons with disabilities and persons at risk of health.85 Finally, articulation of demand by district and developing a disability and refer them for intervention; CHAPTER 3: sub-national governments for health services for PWD and (ii) improve coordination between government is poor. This is partly due to the fact that ­ in a system health providers at different levels through developing that is struggling to respond to overall health issues ­ mechanisms for referral, treatment and follow-up disability has little priority, and partly because disability ensuring improved access and continuity of service. is subsumed within the preventive programs. 3.55. Financial barriers to access: As for the general 3.52. Physical access to health facilities: Again, this population, the bulk of health services for PWD in India remains an under-researched area, though there is an are provided by the private sector, both qualified and increasing number of NGO access audits on facilities, unqualified. As such, to the extent that PWD households which confirm significant issues in physical access for are poorer than average (as evidence in Chapter * PWD. The courts have also been active in certain cases indicates is the case), financial barriers to access will be in promoting access of PWD to basic services.86 As noted, higher than average. In addition, it could be assumed problems of immediate physical access to PHCs were not that PWD may have higher than average need for health identified by PWD in the UP and TN survey as an issue. services due to their disabilities, and hence potentially However, around one fifth of respondents identified incur higher expenditures and financial constraints. accessible transport as a major issue, indicating that This is an area where limited evidence is available. The "door to door" access remains an issue for health services. UP and TN survey results are, however, consistent with In addition, results from other states indicate that such a hypothesis, with per capita spending on health physical access is indeed a significant problem at higher care by PWD households around 26 percent higher levels of the system. In addition, evidence from Orissa, than that of non-PWD households. The household level for example, suggests that more complex facilities like spending trade-offs this necessitates can be seen in the district hospitals have serious access issues for PWD, lower average spending on education and lower average with, for example, the main entrance in around half the savings rates of PWD relative to non-PWD households in hospitals and toilets in around 90 percent of hospitals the same survey. not being accessible.87 3.56. Weakness in mental health policy and services: 3.53. The number of rehabilitation staff available is Mental health is an area that continues to suffer particular inadequate. According to WHO's guidelines at least neglect in both policy and implementation. The National one trained P&O (prosthetics and orthotic) personnel Mental Health policy was originally articulated in 1982. is required to meet the needs of 1000 people in need. The fulcrum of the policy was the District Mental Health In India, there are estimated to be less than 700 in total, program (DMHP), which barely reached 25 districts in the against a need of over 10,000. The number of P&O country. The government recognizes the gaps in access facilities is also low. In India there are approximately 500 to mental health and its growing role in the community. workshops, and 80 percent of these services are located The policy is in the process of being re-envisioned with in the major cities. an emphasis on institutional reorientation, improved 3.54. A poor referral system which doesn't fully utilize community awareness, strengthening of community the expertise at the higher levels of the system. At present mental health initiatives, improved research and there are a collection of disparate services between informational resources, and improved priority setting health and rehabilitation and there is a need to develop a and inter-sectoral collaboration. 85 Bhambani, op.cit. Low levels of knowledge among health care providers is not of course restricted to disability, as recent studies even from urban centres such as Delhi have shown (Hammer and Das, 2005), but the lack of knowledge on disability-specific issues appears particularly pronounced. 86 Disability Law Network (2005). 87 Swabhiman (2004). 51 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES BOX 3.2: WHO'S "TEN QUESTION PLUS" SCREENING INSTRUMENT WHO has over the past 25 years been developing a simple 10. Compared with other children of his/her age, does the methodology for identification of children at risk of disability child appear in any way mentally backward, dull or and subsequent screening. It relies on the two-phase Ten slow? Question Screening Instrument (TQSI), recently adjusted to include an eleventh question in the so-called TQSI plus. The 11. Does your child show any behavioural problem, such first stage is carried out by community workers, and seeks to a frequent tantrums, aggressive behavior, or difficulty identify children whose mothers answer positively to one of relating to people? the eleven questions below. A short questionnaire in the Yes/ Children who are identified as possibly disabled according to No format was developed to identify 3-9 year old children the above questions are referred to a second phase, where with disabilities in community-based setting. Of the ten screening is carried out by a team of medical professionals questions, four were concerned with child's vision, hearing, and psychologists. The epidemiological data from Stage 2 are movement and seizures, and six concerning the child's then used also to generate prevalence estimates of disability cognitive competence. in children (requiring a sample size of around 10,000 children House-to-house survey on approximately 1000 children in stage 1). To date, more than 70 countries rely on a stage-1 was carried out by community workers. It was followed by only version of TQSI. While useful, this is more helpful for professional assessment of children who were screened direct intervention and less for prevalence estimates. A positive. A small proportion of randomly selected presumed number of developing countries (e.g., Bangladesh) use the non-disabled children (screened negative) was also assessed. two-stage TQSI. The original instrument was modified to test whether the To validate the TQSI, an international pilot study of severe instrument could be used on children as young as 2 years of childhood disabilities was conducted in 9 developing age. For this purpose an alternative version of question 9 on countries (Bangladesh, Brazil, India, Malaysia, Nepal, Pakistan, speech was used on children younger than 3 years old. TQ Philippines, Sri Lanka and Zambia) in 1980-1981 by WHO and has been validated to be used for screening disabilities in 2-9 partners. It has proven to be a non-gender biased screening year old children. instrument that identifies high risk groups and is sensitive 1. Compared with other children, did the child have any for sensory, cognitive, motor, and seizure disabilities. It has serious delay in sitting, standing or walking? proven to be a reliable, efficient and low-cost instrument for undertaking surveillance and monitoring the prevalence of 2. Compared with other children does child have difficulty developmental disabilities where professional resources and seeing, either in daytime or at night? technology are limited. 3. Does the child appear to have difficulty hearing? TQ probe is a modified version of the Ten Questions used in 4. When you tell the child to do something, does he/she the original pilot study. As before, it is a short questionnaire, seem to understand what you are saying? in a Yes/No format consisting of 11 questions with probes concerning the child's vision, hearing, movement, and 5. Does the child have difficulty in walking or moving his/ seizure, and six concerning cognitive competence, and one her arms or does he/she have weakness and/or stiffness extra question regarding any other serious health problems. in the arms or legs? Each question was supplemented with additional one or more questions to further probe into the problem detected. 6. Does the child sometimes have fits, become rigid, or The probe questions were only asked if a problem was lose consciousness? reported in response to the main question. For each 2-9 year 7. Does the child learn to do things like other children his/ old child listed and still living in a household, one TQ probe her age? was completed. The two-stage methodology is now being piloted in seven countries across four regions in the OECD/ 8. Does the child speak at all (can he/she make himself/ World Bank Disability Screening Initiative. herself understood in words; can he/she say any recognisable words? · VietnamandIndonesiainEastAsia 9. For 3- to 9-year-olds ask: · BangladeshinSouthAsia · EthiopiaandKenyainAfrica Is the child's speech in any way different from normal (not clear enough to be understood by people other · PanamaandMexicoinLatinAmericaandtheCaribbean than his/her immediate family? On obvious question on such a method relates to cost. For 2-year-olds ask: Experience in pilot countries (e.g., in recently completed pilot in Ethiopia) with TQ probe indicates a need for training and Can he/she name at least one object (for example, an capacity building of community workers in the pilot phase, animal, a toy, a cup, a spoon)? but also that local teams have become rapidly self-sufficient. Source: OECD and World Bank staff 52 3.57. Community attitudes: As in many areas of improved outreach and possibly simpler procedures HEALTH AND PEOPLE WITH DISABILITIES disability, community attitudes continue to be a for disability certification, including raising awareness constraint on raising the profile of health services for that such a system exists. Given the serious supply-side PWD. This is particularly the case with mental illness, constraints, it also seems sensible to explore accreditation but also a more general product of community attitudes of qualified private health care practitioners for disability to causes of disability which place insufficient emphasis certification. While this is not without risks and would on health-related causes of disability. Such attitudes are require a basic oversight mechanism, it seems a feasible in part driven by the lack of voice of PWD, which may way to address the major outreach problems of the CHAPTER 3: limit their capacity to articulate their need for health public sector with respect to certification. services. For some PWD, communication may itself be an issue, and so they may be additionally constrained 3.61. Minimizing the incidence and severity of by the nature of their disability. In sum, the status of disability: Cost-effective interventions to minimize the PWD within the household, age, type of disability, disability need to be strengthened, including iodization and time of its onset, can all affect the demand at the of salt (recently made mandatory once more), and individual level. micronutrient supplementation for children and pregnant women. This would include a reversal of F. Conclusions and Recommendations declining immunization coverage (polio excepted), which contributes to both disability and mortality rates. 3.58. It is clear that much remains to be done to Current efforts such as provision of simple aids as glasses improve the response of health systems to disability, or crutches also need to be expanded ­ in partnership both in terms of prevention and in terms of access to with the private sector ­ to prevent mild impairments treatment and rehabilitation services. While specific becoming serious disabilities which compromise learning, interventions and services for prevention and treatment work, and other activities of daily life. The importance of of disability are needed, improvements in the general simple interventions such as cataract surgery and hearing public health and health delivery systems will have devices will also increase with an ageing population. the most significant benefits in the area of disability: However, other efforts will be needed beyond the health The analysis points to one overwhelming conclusion: sector. Efforts to promote road safety are an important the major share of disability is caused by poor access case, with the rapid expansion in accident-related to health services, malnutrition and diseases that are disability. While the draft National Road Safety Policy is peculiar to developing countries. Thus, prevention one step, greater efforts at the state level such as those of disability is intrinsically related to reform of the being pioneered in Kerala and Tamil Nadu are needed to public health system. It is also clear that prevention stem the major increase in traffic injuries and death. of disability is also dependent on policies and actions outside the health system, including in the areas of 3.62. Improving quality of care for disabled people: road and workplace safety, water and sanitation, and Key actions to be taken include (i) better integrating nutritional interventions. disability management in existing health delivery 3.59. Improvements in access to care and outcomes for systems. Departments of social welfare, health and PWD are needed in several areas, some of which are in W&CD have to work together and in tandem with the general public health and health delivery systems early intervention through the education system, and other specific to services for disabled people: NGOs and communities. This would include joint disability training for local level service providers and 3.60. Improving identification and certification communities based on common mandates, combined of disability: A thorough review of the existing with incentives and identification of influential early identification system for disability, with strong champions. Improving training of PWD as health coordination between the ICDS system and local health advocates and field facilitators is needed if they are to care providers (both public and private), is needed to become active agents and not passive beneficiaries are improve early identification of disability and ensure also important; (ii) improved referral systems for the more cost effective prevention and treatment. The TQSI existing rehabilitation network, followed by increased probe methodology seems worth experimenting with funding and personnel (whose levels are currently at in this respect. This effort needs to be accompanied by less than 10 percent of WHO standards for developing 53 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES country rehabilitation services); (iii) a stronger NFHS and general health surveys, which have neglected distribution network for Government programs of disability. More specifically, India has some way to go in aids and appliances, including awareness raising of developing a robust injury surveillance system, including among PWD and incentives schemes for producers; (iv) for road accidents, and examples such as Thailand's improved centers and resources devoted to disability National Injury Surveillance System introduced in 2003 management, including assessment, rehabilitative provide useful lessons in this respect.88 services and medical intervention. Indian organizations 3.64. Given capacity constraints, improving the have capacity to develop low cost technology for health sector's response to disability may most PWD, but need adequate funding and incentives; (v) feasibly happen in two phases. The first phase more aggressive efforts to develop government and would concentrate on accelerated response closest NGO partnerships in all areas of disability services will to the community. This would include an improved be needed to strengthen service delivery; and finally certification system, promotion of CBR (including (vi) continued efforts to ensure that prevention of awareness raising and stigma reduction), and disabilities through immunization and other preventive enhancing micronutrient supplementation (including measures is strengthened. food fortification) and immunization. The supply-side interventions would need to include training of general 3.63. Addressing current and future provision and duty medical officers in disability certification, and of information gaps. New legislation and its enforcement community volunteers. The second phase would focus are needed, particularly in the areas of mental health on improved referral systems between levels of the and road safety (including emergency care), both of health system, including increased supply of therapists which are increasingly important causes of disability. The and support for establishment of therapy centers in aging of the population and attendant disability needs rural areas. It would also likely involve networking of of the elderly will need to be addressed. Finally, data hospitals and specialized centers, possibly with support and statistics on disability need to be more reliably and from the private corporate sector. regularly collected, in particular through strengthened n 88 See WHO/World Bank, op.cit. 54 Photography: Caroline Suzman, World Bank Photo Library 55 EXECUTIVE SUMMARY PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES 56 4.1. As for any other group, education is critical to in the face of limited institutional capacity, and often expanding the life prospects of people with disabilities. constrained resources. Equally, it raises difficult trade-offs In addition, the socialization of children with disabilities for those responsible for allocation of public resources (CWD) through education assumes an unusually for education. While Indian law and policy are clear important role in societies such as India where social in the commitment to the right of all children to basic exclusion of PWD is significant. Despite its importance education, in practice difficult issues arise. For example, and notable progress in recent years, educational if a given fiscal allocation aims to maximize enrollment, outcomes for children and adults with disabilities minimize drop-out and improve quality of education for remain very poor. Illiteracy rates both for all PWD all children, there may be tough choices in cases where and for school-age disabled children remain much the resource requirements for CWD are higher than higher than the general population, and school for other children and bringing CWD into the system attendance among school age CWD continues to implies that greater numbers of non-disabled children lag that of non-disabled children by wide margins. do not enroll or drop out as a result. This is an area where This chapter discusses first the policy developments in a rights-based approach and that of economists and India and internationally on education of CWD. It then utilitarians can conflict. presents an educational profile of CWD and PWD, and finds that India's MDG goals in education will not be 4.3. However, they need not. International evidence met with current performance with respect to children suggests that the educational outcomes of non- with disabilities. A review of the current performance of disabled students can also be improved by inclusion of public initiatives in the general education system to get CWD in integrated classes. While more evidence from CWD into school and improve their learning outcomes developing countries is needed, evidence from Canada follows. An overview of non-government initiatives in and the USA at both pre-school and basic education PWD education then follows, before conclusions and levels found improved outcomes for non-disabled recommendations.89 students from integrated learning.90 Studies in India on the issue are to date lacking, but evidence from a pre- 4.2. As in other areas of service delivery, many of the school study in the slums of Mumbai found that a range issues discussed in the chapter reflect broader challenges of developmental indicators for non-disabled children in an education system which is grappling with issues of also improved significantly following the inclusion of quality and drop out for children without specific needs disabled children. 91 even at the primary level. Many of the issues discussed with respect to CWD are thus more acute manifestations A. Indian and International Policy of broader challenges. The chapter seeks to identify key Developments on Education of constraints on improving participation and learning outcomes for CWD, but equally acknowledges that the CWD agenda is a medium term ­ in some cases long term 4.4. The education of children with disabilities and ­ one, which requires prioritization and sequencing special needs in India was initiated in the late 1800s, 89 The background papers for this chapter are Sundararaman (2005) and Chadhha on Orissa (2005), and also benefited from field notes from Jangira. It has also benefited from discussions with and presentations of Mithu Alur and a presentation at the dissemination workshop of Richa Sharma from MHRD. 90 Freund (1995) re pre-school, and Cook (1995), which points also to differential impacts on non-disabled students according to the disability severity of classmates. On the latter, the impacts on general students of having more severely disabled children in the class were more clearly positive than where children with more mild disabilities were included. 91 Alur and Rioux (2004). 57 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES with the establishment of special schools for the Deaf in offered states assistance to help plan execution of the Bombay in 1883, and for the Blind in Amritsar in 1887. IED. As of 2006, DPEP was implemented in 23 districts By 1900 numerous special schools for the visually and of 3 states (Rajasthan, Orissa and West Bengal). Over hearing impaired children were set up across the country. 600,000 children with special needs have been enrolled This initiated the tradition of special schools in the in regular schools under the program. country and till the 1970s, this was the dominant mode 4.7. The PWD Act itself was an important intervening of service delivery for children with special needs (CSN). policy development in education. As discussed in 92 It was only in 1974 that the scheme on Integrated Chapter 7, its position on a rights-based entitlement to Education of Disabled Children (IEDC) broke new ground basic education was clear and consistent with India's by stressing the need for educating children with mild international commitments on education of CWD (see to moderate disabilities in regular school settings. Box 4.1). At the same time, its guidance on modalities However, the tensions between the role of special and for ensuring realization of the right was less so, with all general schools for CSN continues today, even after the options for delivery of education for CWD allowed for widespread recognition that inclusion is seen as a more and not as much specific guidance on which was the effective educational and social strategy in most cases. priority mode anticipated and in what circumstances 4.5. The National Policy on Education (1986) brought other modes would be appropriate. Just as importantly, the fundamental issue of equality for CSN to the it gave no guidance on who should take the decisions forefront. 93 It stated that the "objective should be to on the most appropriate form of education delivery for integrate physically and mentally disabled people with a specific child with a disability: administrative channels, the general community as equal partners, to prepare more locally representative bodies such as PRIs or VECs, them for normal growth and to enable them to face life parents of the CWD, or the role of the CWD themselves in with courage and confidence". While the NPE helped set taking such decisions. the stage for further integration and inclusion, only in 4.8. SSA was launched in 2001, and it aims to provide 1990 did the government provide teeth to the policy eight years of uninterrupted, good quality education to through the adoption of the Plan of Action (POA). The children between the ages of 6-14 years, and to have POA ambitiously committed to universal enrolment all children in school, learning and completing primary by 2000 for both children with and without disabilities. and upper primary cycles by 2010. The framers of SSA It also strengthened the NPE by demanding that CSN came to an early realization that their objectives could be educated only in regularl schools and not in special only be met if the education of CSN was an important schools as had been allowed earlier. The placement part of the program. The key provisions under the principle for CSN in effect relegated special schools to SSA for integrating and including children with special the status of bridge schools. Children in these schools needs is through: (i) a cash grant of up to 1200 Rupees were expected to obtain training in non-curriculum per CSN per year; (ii) district plans for CSN that will be areas to help them prepare for general curricula, after formulated within the above prescribed norm, and which it was expected that they would be transferred to (iii) the involvement of key resource institutions to be general schools. encouraged. 4.6. By the mid-1990s, GoI initiated the District Primary 4.9. A specific feature of SSA is a zero-rejection Education Programme (DPEP) and its subcomponent policy.94 This suggests that no child having special known as the Integrated Education of the Disabled (IED). needs can be neglected nor denied enrolment on the The main aim of DPEP has been to universalize primary basis of such concerns. The PWD Act provides, however, education, including ensuring that CSN do not get a loophole in how this is defined in practical terms. It sidelined in the process of expansion. Given that micro- states that children will be educated in an "environment, planning has been a key element of DPEP, the Center which is best suited to his or her learning needs" and that it 92 Though the 1944 and 1948 Sargent Reports also noted that children should not be segregated. There are currently estimated to be over 2,500 special schools in India. RCI (2000). 93 The NPE was predated by the National Education Policy of 1968. While the NEP also contained the essentials of an integrated schooling system for children with and without disabilities, it did not get translated into a detailed set of strategies for implementation. The NEP followed the recommendations of India's first education commission (Kothari Commission in 1966). Its recommendations included expansion of education facilities for physically and mentally handicapped children and also the development of integrated programs enabling children with disabilities to study in general schools. 94 This is also reflected in the 93rd Amendment of the Education Bill which explicitly states that "all" children means children with disabilities as well. 58 EDUCATION FOR PEOPLE WITH DISABILITIES BOX 4.1: INTERNATIONAL POLICY DEVELOPMENT ON EDUCATION OF CHILDREN WITH DISABILITIES There has been a gradual ­ though by no means linear ­ strengthening of international commitment to inclusive education (IE) of CWD over the past two decades. India has been an important participant in these developments, and its own policy development in large part tries to incorporate its international commitments into domestic policy on IE. Some of the major milestones have been: The 1989 Convention on Rights of the Child noted that "Parties shall respect and ensure the rights set forth in the present Convention to each child within their jurisdiction without discrimination of any kind, irrespective of the child's or his or her parent's or legal guardians' race, color, sex, language, religion, political or other opinion, national, ethnic or social origin, property, disability, birth or other status." While a general base, it was an important step in reaffirming the right to education of CWD. CHAPTER 4: However, unfortunately, the EFA declaration in Jontien in 1990 failed to mention explicitly the right of CWD to education. The failure explicitly to mention CWD in Jontien led to the Salamanca Declaration of 1994, which had an exclusive focus on children with special needs in the context of EFA. The Salamanca Statement and Framework for Action has the most definitive statement on education of children with special needs. Ninety-two countries (including India) endorsed the Salamanca statement requiring that "ordinary schools should be equipped to accept all children, regardless of their physical, intellectual, emotional, social, linguistic or other conditions". The declaration also states that "Educational policies at all levels,. . should stipulate that children with disabilities should attend their neighborhood school, that is, the school that would be attended if the child did not have the disability". The Declaration also commits that children with disabilities and special needs must have access to regular schools which should accommodate them within a child-centered pedagogy capable of meeting these needs. Unfortunately, despite the Salamanca Declaration, the EFA declaration in Dakar in 2000 again failed to mention CWD. Girls, ethnic minorities, and the poor are explicitly mentioned in the Declaration, and there remains a commitment to education for all, but Dakar represents a missed opportunity on IE. Hopefully, such stop-start initiative on IE will end with the recently-approved UN Convention on the Rights of Persons with Disabilities. Article 24 of the Convention very clearly recognizes the rights of CWD to inclusive education. The key provisions are as follows: "States Parties shall ensure that: a. persons with disabilities are not excluded from the general education system on the basis of disability, and that children with disabilities are not excluded from free and compulsory primary education, or from secondary education, on the basis of disability; b. persons with disabilities can access an inclusive, quality and free primary education and second education on an equal basis with others in the communities in which they live; c. reasonable accommodation of the individual's requirements is provided; d. persons with disabilities receive the support required with the general education system to facilitate their effective education; e. effective individualized support measures are provided in environments that maximize academic and social development, consistent with the goal of full inclusion." is possible that the special needs of a child compel him 4.10. The year 2005 saw the most recent and or her to be educated in special schools. Where possible, comprehensive policy push from GoI on education of the decision on the appropriate form of education is both children and adults with disabilities, in the form of taken jointly by resource teachers, parents, medical the Minister of HRD's Policy Statement in March 2005,96 teams and regular teachers. SSA itself provides useful followed by a year long development of a national flexibility to the local levels in making this determination, Action Plan for Inclusion in Education of Children and with an emphasis on AIE/EGS schools and home-based Youth with Disabilities.97 The main objectives of the support, all intended to bridge CSN into mainstream Action Plan are set out in Box 4.2. The Plan should ­ if education. While SSA offers each district to plan for its effectively implemented ­ provide major impetus to own future and for that of its inhabitants, the centre is improving educational outcomes of CWD. At the same playing play a useful role in disseminating good practice time, the draft Plan and consultations around it suggest to help districts make appropriate choices.95 that there will remain major challenges in promoting 95 Some of the resource materials from SSA authorities include a manual for planning and implementation of inclusive education under SSA, documentation of good NGO practice under SSA, documentation of good home-based practice in special needs education, and a regular newsletter on inclusion. 96 Statement made in the Rajya Sabha on 21.3.2005 by the Minister for Human Resource Development on the subject of the Inclusive Education of Children with Disabilities (Office Memorandum dated 22.3.2005 of Department of Secondary and Higher Education, MHRD) 97 Available on MHRD website. 59 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES BOX 4.2: NATIONAL ACTION PLAN FOR INCLUSION IN Illiteracy rates are very high for all PWD, but extreme EDUCATION OF CHILDREN AND YOUTH WITH DISABILITIES for those with severe disabilities The main objectives of the Action Plan will be to: FIGURE 4.1: ILLITERACY AND PRIMARY ATTAINMENT RATES FOR ALL PWD, 2002 · Ensurethatnochildisdeniedadmissioninmainstream education. 80 % of disability category, · Ensurethateverychildwouldhavetherighttoaccess 70 an anganwadi and school and no child would be turned 60 50 all ages back on the ground of disability. 40 · Ensure that mainstream and specialist training 30 institutions serving persons with disabilities, in the 20 government or in the non-government sector, facilitate 10 0 the growth of a cadre of teachers trained to work within Severe Moderate Mild the principles of inclusion. Illiterate Primary or less · Facilitate access of girls with disabilities and disabled Source: NSS, 58th round. Bank staff estimates. students from rural and remote areas to government hostels. current attendance of CWD are very poor and far below · Provide for home based learning for persons with severe, multiple and intellectual disability. national averages, though recent administrative data indicates some improvement for primary age children. · Promotedistanceeducationforthosewhorequirean individualised pace of learning. This section develops the picture from Chapter 1 with · Emphasize job-training and job-oriented vocational more detail on CWD educational performance, mainly training. relying on NSS sources. The focus is primarily on children · Promoteanunderstandingoftheparadigmshiftfrom in general education.98 charity to development through a massive awareness, motivation and sensitization campaign. Literacy rates of all PWD Source: Minister of HRD Statement (2005). 4.13 Chapter 1 showed the high illiteracy rates of PWD across disability categories. It is also possible to analyze institutional coordination within and between levels illiteracy rates of all PWD by the self-declared extent of of government and administration, and in developing their disability. This is presented in Figure 4.1 from NSS genuine partnerships with NGOs and civil society. This is from the 2002 round. The findings run in the expected in part due to an absence of a comprehensive diagnostic direction. Almost three quarters of those with severe of existing initiatives during the Plan's development. disabilities are illiterate, and even for those with mild disabilities, the illiteracy rate is around half. 99 For the 4.11 It is clear that education policy in India has severely disabled, just over 10 percent have achieved gradually increased the focus on children and adults middle school or higher education, while even for with special needs, and that inclusive education in moderately disabled people the share is only 20 percent. regular schools has become a primary policy objective. Table 4.1 examines the same data for children currently The following section examines the extent to which of school going age, and show that the situation has not these policy commitments are being met in practice in improved at all for children in the current generation the educational attendance and attainment of CSN. with severe disabilities. B. Educational profile of PWD Literacy and attendance for children with 4.12 While policies are important, it is educational disabilities outcomes that matter. This section describes current 4.14 Figure 4.1 presents attainment data for the data on educational outcomes of CSN and PWD. entire PWD population. For policy purposes, the more Overview statistics on both the educational attainment immediate focus has tended to be on current school age of PWD and the current school attendance rates of CWD children and improving their educational attendance. in basic education were presented in Chapter 1. It is very Chapter 1 showed that around 38 percent of CWD aged clear that both educational attainment of all PWD and 6-13 are out of school, with the rates much higher for 98 Vocational education for young adult PWD is discussed in the employment chapter. 99 Literates in the NSS 58th round were defined as persons who could read and write a simple message with comprehension, and those unable to do so, were deemed illiterates. Such findings are consistent also with a number of micro-studies, including Unnati and Handicap International form Gujarat. 60 EDUCATION FOR PEOPLE WITH DISABILITIES School attendance of both boys and girls with · across all CWD, attendance at school never rises disabilities is low, but gender differentials less than for above 70 percent for boys and around two thirds non-disabled children for girls, confirming the SRI data on non-attendance FIGURE 4.2: SCHOOL ATTENDANCE OF PWDS, 5-20, BY AGE from Chapter 1. These rates also compare very AND GENDER unfavourably with the age-specific rates for all 100.0% children, which for boys peak at over 90 percent (at 80.0% around the same age), and for girls at close to 90 60.0% percent.100 CHAPTER 4: 40.0% Boys · significant gender differentials among CWD do not 20.0% Girls emerge till around age 12. This shows a marked 0.0% 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 difference to the general school age population, for Source: NSS, 58 round. Bank staff estimates. th which boys' attendance rates remain 8-10 percentage points higher than girls' throughout the basic education cycle.101 The conclusion would seem to be certain disabilities. Figures 4.2 and 4.3 track the school that the negative attendance impacts of disability are attendance of CWD between the ages of 5 and 18 by diluting the gender discrimination in basic education rural/urban and gender from 2002 NSS. Several points which one sees for non-disabled children. emerge: · as expected, attendance rates in urban areas School attendance for CWD in rural and urban areas is for CWD are higher than rural, but even at peak far lower than for other children throughout school age attendance never exceed 74 percent in urban and two thirds in rural areas. This can be compared to FIGURE 4.3: SCHOOL ATTENDANCE FOR PWD, 5-20, BY AGE AND AREA figures from the same NSS round for all children in Figure 4.4, which indicate much higher age specific 80.0% 70.0% enrollment rates for both rural (close to 90 percent) 60.0% 50.0% and urban (over 90 percent) children without 40.0% disabilities. 30.0% Urban 20.0% Rural 10.0% 4.15 As for the entire PWD population, it is also possible 0.0% 5 7 9 11 13 15 17 19 with NSS to look at both school attendance and current levels of educational attainment by severity of disability Source: NSS, 58th round. for those currently in school age. This is presented in FIGURE 4.4: SCHOOL ENROLLMENT OF ALL CHILDREN BY AGE AND LOCATION, VARIOUS YEARS 100 90 Enrollment Rates 80 70 60 50 40 30 20 10 0 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 Age Rural 1987 Rural 2002 Urban 2002 Source: World Bank (2006), based on NSS, 43rd, 50th, 55th and 58th rounds 100 World Bank (2006, forthcoming), using the same NSS 2002 round for calculation of general rates. 101 Op.cit. 61 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES Children with disabilities have very high illiteracy 4.16 The above figures focus on national averages. rates, in part because so many are out of school Differences in CWD attendance can also be seen. This is shown in Figure 4.5 for CWD 6-13 years old. In even TABLE 4.1: CWD EDUCATION ATTENDANCE AND ATTAINMENT BY SEVERITY, 2002 the best performing major state (Karnataka), almost a Educational indicator Severe Moderate Mild PWD quarter of CWD are out of school, while more than half PWD PWD are out of school in states such as Madhya Pradesh and Goes to school 25.7% 56.3% 67.9% Assam.103 There does not appear to be any correlation Illiterate 72.2% 42.6% 34.9% between the state-specific general out-of-school rate Primary or less 26.4% 52.0% 58.2% and that of children with disabilities, nor any clear pattern Middle 1.5% 5.3% 6.8% in CWD rates between state income levels and outcomes. Secondary 0.0% 0.1% 0.0% Perhaps the most obvious point is that even states with Higher 0.0% 0.0% 0.0% excellent outcomes on their general child population such as Kerala and TN have stubbornly high out-of- Source: NSS, 58th round. Bank staff estimates. school rates for CWD. Thus in Kerala, CWD account already for 27 percent of out-of-school children, and in TN for over 34 percent of all out-of-school children. This Table 4.1 above for children 5-14 (the broad target age underlines the increasing importance of getting CWD for basic education in India). Several points emerge: into school if even well-performing Indian states are to · almost three quarters of children with severe achieve the education MDGs.104 disabilities are illiterate and the same share do not attend school.102 4.17 The other obvious aspect of educational attainment is to look at specific categories of CWD. This · at the other end, close to one third of children with is shown in Figure 4.6. It is clear that illiteracy is high only mild disabilities are not in school. These are among all categories of disability, and extremely so for children who need no aids/appliances to participate, children with visual, multiple and mental disabilities. and should in principle not be significantly more The numbers also rebut a common assumption that difficult than other children to bring into the school poor educational outcomes of CWD are a function of system. low intellectual capacities among children with mental · across all levels of severity, CWD very rarely impairments. At the same time, locomotor disabled progress beyond primary school. children stand out as having substantially lower Out of school rates for CWD are high in all states and Illiteracy rates are very high among all CSN, though CWD account for a higher proportion of all out of school lower for children with locomotor disabilities children as overall attendance rates increase FIGURE 4.5: SHARE OF 6-13 YEAR OLD CWD AND ALL FIGURE 4.6: SHARE OF ILLITERATE OF 6-13 YEAR OLD CWD BY CHILDREN OUT OF SCHOOL, 2005 DISABILITY CATEGORY, 2002 60 % of cohort out of school 80% 50 70% 40 60% speci ed disability % of children with 30 50% 20 40% 10 30% 0 20% 10% Assam Bihar Delhi Har Jhar Karn Kerala Maha Oris Punj J&K WB MP Raj UP TN AP 0% Mental Visual Hearing Speech Locomotor Multiple CWD All Source: SRI survey, 2005. Source: NSS, 58th round. Bank staff estimates. 102 As in many parts of the world, attendance at pre-school education is an important contributor to better educational outcomes later in life. Multivariate analysis of the NSS reveals that CWD who attended pre-schooling are significantly more likely to be attending school. However, available evidence suggests that until recently CWD have been largely ignored in ICDS, the national ECD program of GoI. Alur (2000). 103 The administrative data (DISE) at the aggregate level broadly confirm these insights, though there is by no means a close match on a statewise basis. 104 The point for India is consistent with international estimates that 33-40 percent of out of school children worldwide have disabilities (UNESCO, 2004). 62 EDUCATION FOR PEOPLE WITH DISABILITIES illiteracy rates than other CWD. This is explainable in percent have attended a regular school. The figures part by the fact that less curricular or learning material for those currently attending school are very similar adaptations are needed to promote inclusive education and are shown in Table 4.2, with nearly all 5-18 year old for locomotor disabled compared other categories of CWD who are in school attending regular schools. This disabled children are required, but are also driven by brings home clearly that the choice facing most CWD family and community attitudes. is whether they are out of school or in regular school, and hence the necessity of promoting inclusive 4.18 While a household survey-based assessment is regular schools. The NSS also provides insight into overdue, administrative data suggest that there has CHAPTER 4: why CWD are not enrolling in special schools. The been considerable improvement in primary enrollment picture is somewhat ambiguous, with a fairly even split of CWSN during the 2000s. Enrollment of CWSN in between clear supply side factors such as lack of any regular schools has increased sharply in official data or accessible special schools, clear demand side factors from 566,921 in 2002-03 to 2.16 million in 2007-08. While such as lack of parental interest and economic reasons, enrollment may or may not mean regular attendance and factors related to the child's disability which are (which would need to be verified in household surveys), hard to interpret. this is an impressive achievement in terms of improving contact with the formal education system. In addition, the number of CSWN in EGS/AIE/home-based education TABLE 4.2: SHARE OF CWD ATTENDING REGULAR AND SPECIAL SCHOOLS, 2002 has increased between 2004-05 and 2007-08 from around 56,000 to over 206,000. The annual trends can be Currently Currently seen in Figure 4.7 below. attending attending special regular school school Where are CWD going to school? 5-14 years 94.3% 5.7% 4.19 This has several elements ­ whether CWD are 5-18 years 94.8% 5.2% attending regular or special schools, whether they are Source: NSS, 58th round. Bank staff estimates. attending public or non-government schools, and for those in the government system what proportion of CWD are receiving alternative forms of education. This 4.20 A second important element of the educational can be pieced together from several sources. On the attendance of CWD is whether they are in private or issue of regular or special school, the NSS indicates public schools and how that compares to children that the overwhelming majority of CWD attend without disabilities. This is not available in NSS regular rather than special schools. Around 70 percent unfortunately.105 One source is the UP and TN village of disabled children and young adults aged 5-20 have survey and results from this are presented in Figure 4.7 ever attended school in their lives. Of these, fully 90 below. The important feature in the results is not so much Administrative data indicate improvements in FIGURE 4.8: SHARE OF CWD AND NON-CWD IN PUBLIC AND CSWN enrollments in recent years PRIVATE SCHOOLS AMONG THOSE ATTENDING, UP AND TN, 2005 FIGURE 4.7: ANNUAL ENROLLMENTS OF CWSN IN REGULAR SCHOOLS, 2002-08 70% % of those attending school 60% 2500000 50% 2000000 40% 1500000 30% 1000000 20% 500000 10% 0% 0 CWD CWD severe Non-CWD 2002-03 2003-04 2004-05 2005-06 2006-07 2007-08 Govt school Private school Source: SSA; Sharma dissemination workshop presentation. Source: UP and TN village survey, 2005. 105 The recent SRI survey has data nationally, though such analysis has not to date been done. 63 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES the absolute levels of public and private enrollment in TABLE 4.3: CHILDREN MISSING SCHOOL TO CARE FOR the two states (which reflect quite localized supply and DISABLED FAMILY MEMBERS, UP AND TN, 2005 demand factors), but the relative rates of public and Proportion of private enrollment among CWD and non-CWD. The PWD households share of CWD in private schools in rural UP and TN is Share of HH where child sometimes 5.2% misses school to assist disabled family only slightly less than for children without disabilities. member Given the very low rates of special school attendance, Of which: this can be assumed not to be a special school effect only. Every day 7.1% The result is interesting in that parents of CWD who are More than one day a week 21.4% in school seem equally willing to make the investment About one day a week 21.4% in private education despite the fact that labor market At least one day a month 32.1% outcomes of PWD are so obviously worse. Other 17.9% 4.21 A final element on CWD attendance is the Source: UP and TN village survey, 2005. Bank staff estimates. proportion of those in the government education system are attending alternative schools. SSA data for days a week of school missed to assist disabled family 2007-08 indicate that around 3.6 percent of identified members in the home. PWD are in EGS/AIE schools, and a further 4.6 percent in 4.23 Despite the move to more inclusive educational home-based education settings (with a combined total policies, clearly the educational outcomes of children of over 200,000 CWSN), the latter in particular a notable with disabilities are substantially lagging those of the improvement from earlier years, with the share in home- general population. This suggests that education of based education overtaking those in EGS/AIE settings CWD is experiencing implementation problems which for the first time in 2007. 106 In both cases, there was in are characteristic of many areas of public policy in India. 2006 a strong statewise concentration, with many states The following section explores the performance of key reporting no CWD in either form of education. programs to explore the factors driving these outcomes. Impacts on schooling of a disabled family member C. Public Interventions to Promote 4.22 The above discussion focuses on children with Education of Children with Special disabilities themselves. A further important issue is the Needs extent to which having a child with a disability in the 4.24 Given the poor educational outcomes of CWD, household may impact the educational attendance this section explores several aspects of implementation of other children in the household. In principle, this of public programs to support inclusion of CWD, and could be estimated from the NSS, though such analysis of the general government school system which are has not yet been undertaken. Pending that, the UP relevant to educational outcomes of CWD. There are and TN survey asked directly about the role of siblings a range of institutional, fiscal/financial, and learning- in caring for family members with disabilities and its related factors where there appears significant scope impact on school attendance. The results are reported for improving the ways in which the education system in Table 4.3. Encouragingly, they are not dramatic promotes educational outcomes of CWD. Some of them (though see the employment chapter for results on are common to all children, but others are specific to caring time of adults, which are more significant). Only CWD. around 5 percent of children with disabled members sometimes stay home to assist them, and of those only around 7 percent do so every day. Nonetheless, Institutional Issues in Special Needs the impacts in the relatively small share of households Education affected should not be dismissed: half of households 4.25 Before performance in key programs for CWD, it is where a child does miss school require one or more useful first to review the institutional arrangements with 106 See section C below. These can only be considered the shares of identified CWD, which appears to be less than half of all CWD when compared to census sources. The National Trust has increased its involvement in recent years in provision of home-based education to CWSN. 64 EDUCATION FOR PEOPLE WITH DISABILITIES respect to education of CSN. This is an area that remains anganwadis for early identification. Information on the problematic in India. There are several institutional number of children is captured through what is referred divisions of labor in the education of CSN that to as household survey.109 Before the survey is conducted, contribute to a lack of coherence in delivery systems. the anganwadis are oriented on specific formats that are to be used for the survey and have been developed 4.26 The first split in the delivery system for special independently by both DWCD and Elementary Education needs education is between the MHRD ­ which is departments. The DWCD format is more comprehensive responsible for the general education system ­- and as it covers all persons with disabilities (PWD), and not the Ministry of Social Justice and Empowerment, CHAPTER 4: just children from 5-13 years of age. The input-driven which remains institutionally responsible for special planning process adopted for SSA records the total schools.107 This division of labor seems philosophically number of children identified as being disabled, the a remnant of the earlier approaches where CWD were number assessed, and the number enrolled in regular viewed as welfare cases and not like other children. schools. Almost no other information is provided on early It would also appear to act as an institutional brake identification, assessment or enrollment, though MHRED on fuller interaction between special schools and the notes this as a strategic choice so as not to overburden regular schooling system, so that the resource school teachers. The end result is both an overload of the model for special schools is more difficult to promote. workers carrying out CSN identification and a database Finally, such a division is increasingly out of step with in the education system which can not be considered good international practice in education of CWD.108 A reliable. As a result, states are involving NGOs more in UN survey of member states in the 1990s found that 96 identification, with 10 SSA states using them in this role percent of countries placed education of CWD under as well as their other functions. their education ministries, though in 58 percent of cases it was a shared responsibility. 4.29 A fourth institutional challenge has been to promote convergence between government and NGO/ 4.27 A second split relates to teacher training, with community roles in education of CWD. All the programs the Rehabilitation Council of India responsible for under the Department of School and Mass Education special needs teacher training and MHRD, which is have involved NGOs in the implementation of inclusive responsible for general teacher training. Following the education program. Currently, more than 530 NGOs are RCI Act in 1992 and amendment in 2000, the RCI now has involved in some capacity in SSA in 26 states. However, wide-ranging set of objectives. These include regulating, the ongoing challenge is to give NGOs a broader role in training policies and programs, standardization of promoting inclusive education in partnership with the training courses for professionals and prescribing state. NGOs are now involved in assessment camps and minimum standards, providing institutional recognition training of teachers, as well as a range of other functions, and conferring the rights to award degrees, diplomas including bridge course, provision of home-based and certificate courses for professionals in the country education, providing resource support, development of (and extending reciprocal rights to institutions outside TLM and other activities.110 Deepening their role in every of India), and in maintaining a Central Rehabilitation aspect of inclusion at each level (state, district, block, Register for professionals. There remains a basic split cluster, village and school) is an ongoing effort on the between the roles of MHRD and RCI in pre- and in-service part of the Departments of School and Mass Education. training for both regular and special needs teachers In addition, there remains a largely undefined role for which contributes to a lack of coherence in the teacher grassroots institutions, which could play an important role training regime for inclusive education. in promoting inclusion of CWD, including SHGs, Village Education Committees (VEC), Parent Teacher Association 4.28 A third split relates to lack of coordination and (PTA), Mother Teacher Association (MTA), anganwadi duplication of efforts in early identification of children workers, Mahila Swasthya Sanghas (MSS), members of with special needs. Most states use teachers and cooperative societies, and community-based Local Bodies. 107 This was not always the case, with Ministry of Education at the time responsible for special needs education until 1960 when it was transferred to the-then Ministry of Welfare. 108 Peters (2004) 109 Survey is a misnomer as in reality it is a complete Census of all households in the catchment area and records information on all school age children in the house, including information on their disability status. 110 See SSA 2006 re NGO initiatives for inclusion under SSA. 65 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES 4.30 The above institutional issues in delivery of SSA Expenditure on inclusive education has fallen as different aspects of education for PWD are by no means a share of total in recent years though execution has exhaustive. Similar divisions can be seen at higher levels improved in the division between vocational and higher education. TABLE 4.4: EXPENDITURE ALLOCATION AND EXECUTION ON However, even at the basic education level, such IED AS SHARE OF TOTAL SSA SPENDING, 2003-08 institutional lack of convergence remains a hindrance to Year IED Allocation as % IED Execution as % promoting education of CWD. of SSA of SSA 2003-04 1.95% 1.42% Financial performance of public 2004-05 1.73% 0.99% interventions for education of CWD111 2005-06 1.38% 1.20% 4.31 As noted in the policy section, the IED ­ now 2006-07 1.34% 1.27% within SSA primarily ­ is the central public intervention 2007-08 1.07% 1.01% to support education of CWD. This section reviews the Source: SSA evidence on its financial performance. Currently, under SSA the allocation per CWD is Rs.1200 per annum. funding education of CWD internationally and their While the norm is child-based, financial allocations relative merits. are aggregated at district level. Currently, despite the clear policy commitment under SSA, there is no way of 4.32 At the national level, the spending share on guaranteeing that a child with a disability, who attends inclusive education in SSA is low, at around 1 percent school in a particular district, and is eligible for an nationally in recent years and in fact falling as a assistive technology device, will actually receive this. share of total spending allocation and execution in This is because the funding is district- or at best school- the most recent years. At the same time, expenditure based. The funding follows the location and not the execution relative to allocation on IED has improved child, thus there is no scope for school choice among markedly in recent years. This can be seen in Table children with special needs. Survey-based evidence on 4.4, where the expenditure on IED in recent years was the coverage of assistive devices (see health chapter) as high as 1.4 percent of total SSA executed spending clearly indicates a significant remaining agenda in in 2003-04 but has fallen to 1.0 percent in 2007-08. this area. Box 4.3 compares the three main models of Even more notably, the allocation for IED has almost BOX 4.3: MAIN MODELS OF PUBLIC EDUCATIONAL FINANCING, WITH DIFFERENT IMPACTS ON CWD AND IE: Internationally, there are three main models for financing education of CWD, each of which has different incentive structures and impacts on both inclusion and educational outcomes. The models and their main features and pros/cons are: · Child-based funding ­ based on headcounts of CWD, as outright grant to regions, pupil-weighted schemes, or census funding based on total students and assumed share of CWD. This is the most frequently used model internationally and the one followed under SSA. However, there are issues with the model including: (i) concerns on the focus on the disability category of the child vs. actual learning needs and costs. Thus the system is necessarily mechanical rather than needs- based; (ii) the model can be costly where individual diagnosis is required; and (ii) evidence from the EU suggests integration outcomes for CWD are worse that other approaches. · Resource-based models (aka "through-put" models), where funding is based on services provided rather than CWD/student numbers. Typically, this model also mandates units of instruction/programs. Overall, there is evidence of an OECD trend towards these models, which are found to encourage local initiatives to develop programs for CWD. There are, however, concerns on disincentives for schools when CWD progress and funding is reduced. To work well, this approach should be accompanied by some link to outcomes. · Output-based models: These are based on student learning outcomes or some other output. While desirable in principle, there has to date been very limited experience with this approach, (e.g., US No Child Left Behind Act, with financial and accreditation sanctions for failure to meet student achievement standards; UK "league tables"). There are concerns of a natural bias against inclusive education, due to concerns re CWD behind grade level dragging down school average scores. Equally, the circumstances for "failure" are often beyond the school's control (e.g., student absenteeism; unadapted curriculum). Source: Peters (2004). 111 While evidence on service delivery worldwide makes it clear that simply increasing expenditure does not ensure improved service delivery outcomes, expenditure performance in programs is generally a useful indicator of the relative priority given to different elements of public programs. See WDR, 2004. 66 EDUCATION FOR PEOPLE WITH DISABILITIES halved as a share of SSA from close to 2 percent to most other heads which are either consistently well in the earlier year to just over 1 percent in the most executed (e.g., civil works and maintenance) or exhibit recent. Nonetheless, expenditure execution relative to strong variations across the states (e.g., salaries). At allocation for IED has improved markedly in the same the same time, recent performance shows marked period, from only around one quarter in 2003-04 to improvement, with sharp improvement in execution 60 percent in 2007-08. This has broadly tracked the even in poor states. For example, in 2005/06, Orissa improvements in expenditure execution for SSA more nearly doubled execution to 54 percent, UP leapt from broaodly, though IED has also closed the gap to overall 25 to 86 percent execution, and West Bengal went from CHAPTER 4: spending execution over time. under 20 to 49 percent. 4.33 There has also been major variation in IE 4.35 Overall, therefore, it appears in many states that spending share between states. Figure 4.8 presents the failure to execute spending for IE is one factor driving the share of total expenditure by major states on inclusive poor attendance of CWD. However, poor resourcing is not education in 2004-05 from SSA. The share ranged from by any means the only factor contributing to both poor over 5 percent in Kerala to well below half a percent attendance of CWD and poor educational outcomes. of SSA spending in MP, Jharkhand, West Bengal and The following sections review a number of other factors Rajasthan. Execution rates also exhibit huge variation which are important. across states, with states such as TN, Karnataka and Assam at very high execution rates, while others perform Making schools inclusive for CWD very poorly (in West Bengal, under 10 percent execution 4.36 A number of factors driving poor educational ­ Figure 4.9). One positive element of the picture is that outcomes of CWD can be grouped under the heading of SSA IE expenditure execution nationally increased, and accessibility and inclusion. There are several elements that states such as Assam and MP showed dramatic of making schools and learning accessible for CWD. improvements in execution over recent years.112 They include: 4.34 A second aspect is expenditure execution on IED · an effective system for early identification of relative to other heads of SSA spending. Figure 4.10 children with special needs, both in terms of provides insights on the expenditure performance on IED medical assessment and in terms of identifying their within SSA for all-India and for five of the poorest states special learning needs and potential (Bihar, Jharkhand, UP, Orissa and West Bengal). It is clear that the relative expenditure performance on inclusive · attitudes of parents, communities and education education was initially very poor (not much over half service providers and administrators which the average execution rate across all SSA spending), promote inclusion of CWD and promote them and consistently so across states. This is in contrast realizing their potential Inclusive education spending is a low share of SSA, but some states perform much better than others in terms of expenditure execution FIGURE 4.9: SPENDING ON IED AS SHARE OF TOTAL SSA, FIGURE 4.10: IED SPENDING EXECUTION AS SHARE OF MAJOR STATES, 2004-05 ALLOCATION, 2004-05 6 120 % of total SSA spending 5 100 IE expenditure as % of 4 80 allocation 3 60 2 40 1 20 0 0 Assam J&K Karn Maha Oris Punj Bihar Jhar Guj Har Assam Bihar Guj Har Jhar Karn Maha Oris Punj Raj WB J&K Ker WB Ker MP MP Raj HP UP TN HP UP AP TN AP Source: SSA. 112 MHRD data. 67 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES SSA expenditure execution on inclusive education is poor, nationally and in the poorest states FIGURE 4.11: IED EXPENDITURE EXECUTION AS SHARE OF ALLOCATION FOR SSA, 2004-05 ALL heads Management % of budget allocation spent W.Bengal EGS-AIE Jharkhand Maintenance Orissa Civil works UP Bihar Textbooks All-India Salaries IED 0 20 40 60 80 100 120 140 Source: SSA. · physical accessibility of schools, not only the school 4.37 This section deals with the above elements of premises and facilities but also accessibility from the accessible and inclusive education for CWD. Many of child's home, which brings in issues like transport the principles necessary to promote inclusion are systems and roads. reflected in recent policy documents of GoI, including the draft Action Plan. However, implementation has · access to appropriate curriculum and learning typically fallen short of policy commitments, in many materials, which are adapted to their learning needs cases far short. Implementing coherent strategies for of CWD, both in content and format inclusive education is one of the greatest challenges · provision of financial incentives and aid/appliance facing education systems in both developed and support for CWD to facilitate their participation in developing countries. Capacity, resource, and regular schooling attitudinal constraints make the challenge even greater in India. Making progress on the above agenda · presence of teachers and education administrators will take considerable time. Nonetheless, there are who are sensitized to the rights and needs of CWD many effective and promising experiences in India in education, and are equipped with basic skills and which suggest that significant improvements in access to resource personnel and materials who can inclusive education are possible in ways that are supplement the skills of general teachers consistent with the constraints that India faces. It is · encouraging a special education system which also important that the system succeed on the basics facilitates inclusive education through greater first ­ primarily identification of CWD and getting them reliance on the community (e.g., through into some form of education from the earliest possible CBR), rather than inhibiting it through over- point. professionalization.113 Identification of CWD · development of coherent government strategies 4.38 The bottom-up approach to planning adopted for promoting inclusive education, which in under SSA is expected to provide a clear picture on how particular take greater account of the important many children will need special assistance to participate roles of NGO and community organizations. in the schooling system. Since district-level funding is · an effective system for monitoring and evaluating tied to the identification of children with special needs, the educational attendance and attainment of the designers of SSA have attempted to define how CWD, preferably integrated with the general the process of identification should be done. GoI has education M&E system. developed a simple set of definitions and a disability- In this respect, NGOs such as Vidya Sagar have introduced training for special needs resource persons that are of a simpler nature, as have groups such as Mobility India through 113 CBR approaches. 68 EDUCATION FOR PEOPLE WITH DISABILITIES specific checklist to help determine children with mild to instruments and personnel needed for these may not moderate disabilities. be readily available in many parts of India. 4.39 Once children have been identified as disabled, · there are large discrepancies in the number of an assessment is undertaken to determine the nature, CWD identified between census data, school- type and extent of disability. This is done by a team based records through DISE, and PAB survey comprising of doctors, eye and ENT specialists, and aggregates used for the preparation of SSA general and resource teachers. The child is then placed annual prospective plans. For example, PAB data in a particular school-type. While the guidelines calls find only 1.54 percent of children identified as CHAPTER 4: for all children with disabilities to be placed in regular having special needs nationally, though this is a school settings, they also permit the placement of significant improvement from only 0.35 percent children in special schools, AIE/EGS centers, distance in 2002/03. Even more significantly, there are learning centers and home-based education if it is unreasonably low shares of children identified decided that the child is not in a position to participate as having special needs in specific states. For in regular school, and the interventions they require example, data for 2005-06 suggest that only 0.31 will be beyond those that can be offered in a regular percent of children in Rajasthan had special needs school even with a trained and qualified teacher. This and 0.7 percent in UP. In contrast, states such as reflects the broader transition from a special education Maharashtra had 2.45 percent and HP around 2.3 to inclusive education model. percent of children identified with special needs. In contrast, census data on 5-14 year old children with 4.40 There are three key issues with early detection disabilities nationally suggests that 2.2 percent and identification of CWD for education policies: of children have disabilities. On a statewise basis, · technical and logistical difficulties in early the differentials are even more dramatic in several identification. As noted earlier, some of the cases, e.g., the number of children identified by PAB issues relate to institutional lack of coordination in Rajasthan as disabled for 2005-06 was less than and duplication. A second aspect of this is the 15 percent of the number of 6-14 year old disabled functioning of disability identification camps, which children identified in the 2001 census. For UP, the achieved at best partial coverage of CWD.114 A further PAB share was under 30 percent of the census concern with testing of younger children is that they figure. In contrast, states such as Maharashtra and need specific preparation for testing, and that the Kerala have SSA CWD numbers well above the The numbers of CWD identified by SSA relative to census numbers have been below half nationally and far less in some states FIGURE 4.12: CWD IDENTIFIED BY SSA IN 2005 AS SHARE OF 6-14 YEAR OLD CWD IN CENSUS BY STATE All-India UP Raj Oris Maha Ker Karn Jhar Guj Bihar Assam 0 20 40 60 80 100 120 140 160 SSA sanctions as % of census 6-14 CWD Source: SSA and 2001 census (Bank staff estimates based on Rajan). 114 E.g., in the UP and TN survey, only 23 percent of PWD had attended a disability assessment camp. 69 PEOPLE WITH DISABILITIES IN INDIA: FROM COMMITMENTS TO OUTCOMES census estimates. The discrepancies between SSA for certification and identification, increasingly in and census sources suggest major challenges for states like Andhra Pradesh, they are being used to government in identifying children with special identify children suitable for corrective surgery (e.g., needs. Figure 4.11 provides comparative figures for children with cleft palettes, etc.). In principle, such several states on the share of children identified as camps do address a broader range of needs, but in disabled through SSA in 2005 and the estimate of practice have supply side and other limitations. all CWD in the 6-14 age cohort as per the census. Attitudes to CWD Since 2005, there has been a sustained emphasis 4.41 Even very poorly resourced systems can be inclusive on identification of CWSN through SSA. The if the attitudes of parents, communities and teachers are increased enrollment of CWSN has broadly tracked sufficiently supportive. Chapter 2 demonstrated that the increase in children identified as having special positive attitudes to CWD being included in regular needs. In 2005-06, 2.02 million children with special schools were rare in rural UP and TN, and that there needs were identified by SSA and this figure rose was virtually universal rejection of children with mental significantly to 2.72 million by the end of fiscal disabilities attending regular schools, even among both 2007-08.115 While such figures compared to the PWD and parents of children with disabilities. However, census (itself a very conservative estimate) still qualitative work found generally a more open attitude to remain considerably lower than "full" coverage of inclusion among teachers. children in the primary cohort age with special needs, it remains a promising improvement in 4.42 There has been relatively little research on the performance. attitudes of teachers towards the education of CWD in India. The existing research on teacher attitudes reveals · there have been concerns expressed from mixed results. An initial study in the 1990s on the educators that identification of CWD is viewed attitudes of administrators, special education teachers more from a medical perspective and does not and general education teachers towards CWD found that focus sufficiently on the learning needs of children over 50 percent of administrators had misgivings about with special needs.116 For example, although their education in regular schools.117 Special and regular medical camps were initially envisaged to be used school teachers had more positive attitudes regarding BOX 4.4: TEACHER ATTITUDES TO INCLUSIVE EDUCATION IN MUMBAI Parasuraman (2002) studied the attitudes of general education teachers towards CWD and inclusion in Mumbai. She specifically explored several demographic variables of teachers such as gender, age, income levels, experience, educational attainment, whether the person had a friend or a relative with disabilities, and the frequency and proximity of contact with this disabled person. She found that: · youngerteachers(20-30yearsold)andthemostsenior(50-60yearsold)demonstratedmorepositiveattitudestowards CWD, compared with the teachers in the 40-50 age group; · therewerenodifferentialeffectsduetogender(althoughotherstudieshaveshownthis); · higherincomegroupshavemorepositiveattitudesthanlowerincomegroups(