Orphans and Vulnerable Children (OVC) Research Study

Transcription

1 Orphans and Vulnerable Children (OVC) Research Study How does the provision of public goods and services affect the response to Orphaned and Vulnerable Children (OVC) due to HIV and AIDS? Richard Matthew Lee UNAIDS September, 2008

2 Contents Section Executive Summary OVC Related Figures Introduction Definitions OVC India Overview Section State Profile - Tamil Nadu Migration Patterns Section Epidemiological Profile Tamil Nadu Tamil Nadu State AIDS Control Society (TANSACS) Reported AIDS Cases Section Situation and vulnerability analysis Tamil Nadu Case Studies of orphan hood and vulnerability Household Elderly and providers of care Poverty, health and education Child trafficking Institutional Vulnerability Cycle of vulnerability Section Analysis of OVC and public good/service provision Health Care Education State education schemes Social welfare TANSACS programming National programme response Section Conclusion Bibliography Appendix

3 Executive Summary This research paper investigates the plight of orphans and vulnerable children as a result of HIV and AIDS in India. It explores the short, medium and long term consequences of public goods and service provision and analyses vulnerabilities and impacts at the individual, household, and community levels. The primary reason for this study is to draw attention to the wider socio-economic implications, particularly with regards to the burden on social networks, the impact on households and the need for appropriate provision of health, education and social welfare services to drive an effective response. The research is based on the premise that mainstreaming the provision of public goods and services is essential in reaching the most vulnerable. The focus of interventions has largely centred on infected individuals and greater emphasis must be placed on the impact of those affected. Where endemic poverty is the norm there is a social responsibility to provide goods and services as without such safety nets the impact of OVC will be compounded for hundreds of thousands of households. For the purposes of this research the definition of an orphan, due to HIV and AIDS, can be understood as; a child under the age of 18, who has lost either a mother (maternal orphan), father (paternal orphan) or both parents (double orphan) with at least one to AIDS. A vulnerable child is defined as; a child under the age of 18 who is either directly or indirectly affected by HIV and AIDS and who is vulnerable to the risk of HIV infection. The HIV and AIDS epidemic has a long wave length and the limited number of people accessing ART in India means the impact of orphan hood due to AIDS will be an ongoing burden. It is important to note that AIDS orphans reflect the history of the epidemic; therefore health and social support structures must be in place to accommodate any projected impact. An overview of the most recent estimated numbers of children affected by HIV and AIDS in India suggests 150,000 children were infected vertically, 1,500,000 orphaned due to AIDS and 7,000,000 with HIV positive parents. More detailed estimates have not been attempted as the country does not have a national generalised epidemic. However, the vast population size and prolonged nature of OVC issues means that its true impact is widely felt and its scope significant. UNICEF has documented that the estimated total number of orphans, due to all causes across India (2005) was in the region of 25,700,000. If the number of orphans due to HIV and AIDS is to be considered a fair approximation then this equates to 6% of orphans as a result of AIDS. This serves as a reflection of the countries status and the challenge posed from children directly and indirectly affected by HIV and AIDS. Importantly, the number of vulnerable children to HIV and AIDS is deemed so vast, amounting to tens of millions, that previous studies have found it difficult to incorporate this group into any meaningful research. Tamil Nadu has been used as the primary case study of this research, firstly, as the state is regarded as a relative success story in it s response to HIV and AIDS. Secondly, it is more progressive than most in terms of overall human development. However, the state also has a significant population below the poverty line (21%) and large vulnerable groups such as Scheduled Castes. These combined reasons provide examples and approaches to address associated issues of OVC due to HIV and AIDS. Although clear and conclusive data is distinctly lacking in this area, Tamil Nadu was chosen for its comprehensive reporting of the HIV and AIDS epidemic among researchers and organisations. A number of district level surveys and a rapid assessment from USAID have helped shed light on the subject matter. In 2005, TANSACS requested its NGO partner organisations to report on the number of known orphans and single orphans due to AIDS and from these NGOs were only able to identify 1,600 cases. However, across eight districts 4,819 children were identified as affected by AIDS. The projected total number of children affected by AIDS in the state is estimated to be in the region of 48,190 children. The most recent data from TANSACS puts the reported figure of OVC at 18,651. The number of children registered to infected parents at Antiretroviral Treatment (ART) centres stood at 5,983 and the number of those on ART was 2,312 as of September In terms of known or estimated numbers of vulnerable children the figures are significant but inconclusive and span across the areas of child labour, child prisoners, trafficked children, street children and children of sex workers and drug users. The National Institute of Social Defence, in 1996, estimated there were 75,000 street children in the city of Chennai alone and the CHILDLINE welfare service handled a total of 22,743 up to 2006, providing an indication of the number of vulnerable children in the state.

4 In terms of household vulnerability this research study suggests the number of households affected at the height of Tamil Nadu s epidemic to be in the region of 98,464, which in turn affects 413,549 household members. Excusing a large number of caveats, if just one household member is a child then 98,464 children would also be vulnerable to HIV and AIDS and a potential AIDS orphan. At the national level the total number of households with someone HIV positive and sexually active is estimated to be 696,888 and would indirectly affect in the region of 3,693,505 household members. Once again excusing a large number of caveats, if just one household member is a child then nationally 696,888 children in the household would be vulnerable to HIV and AIDS and will ultimately become orphaned without necessary interventions. Children can be directly affected by HIV and AIDS through infection or exposed to a whole host of vulnerabilities through the loss of a parent/guardian. Children affected by HIV and AIDS are restricted from experiencing childhood, are burdened with responsibilities that are more common in later life and denied their human rights. The elderly population is an overlooked group in the response to HIV and AIDS, specifically, in terms of the affect the epidemic has on households. The provision of social welfare for the elderly, or primary care givers, differs greatly across India and depends on the progressiveness of each respective state. Even with improvements in health and social indicators, Tamil Nadu will have to confront an aging population. Elderly populations are often the poorest in society, they do not have the means to escape endemic poverty and are often physically and financially dependant on others. In India and Tamil Nadu, 30% of households contain one or more persons aged 60 or above and based on the states peak ANC prevalence if all HIV households included an elderly person this would indirectly affect 2.2% of the elderly household population or 120,601 over 60 s. If a mere 10% of HIV households contained an elderly person the epidemic would still impact on 0.22%, equating to 12,060 elderly individuals. At the national level and on the basis of the countries 2006 ANC prevalence (0.36%) if all HIV households included an elderly person this would indirectly affect 1.2% of the elderly household population or 916,702 over 60 s. If a mere 10% of HIV households contained an elderly person the epidemic would still impact on 0.12%, equating to 91,670 elderly individuals. The realistic impact figures lie somewhere between these projections and demonstrates the potential scale of elderly affected and the consequences of caring for OVC. Poverty remains one of the major reasons contributing to the spread of HIV and is a process that afflicts people s lives in many different ways. People s opportunities to break free from its vicious cycle are greatly reduced with inadequate provision and access to education and the market place. Poverty has major consequences on the access of adequate health care provision and in particular access to HIV and AIDS treatment and support. The role of stigma and discrimination associated with HIV and AIDS further compounds people s capacity to move out of poverty as a result of barriers to public services. Having reduced capacities in education and health access significantly impairs the ability of individuals and groups to prevent and treat themselves. With specific regard to children orphaned by AIDS they face particular deprivations of basic necessities including food, clothing, education and health care. Primary health and HIV and AIDS services are essential public goods in terms of treatment to the sick and neediest. Through accessible and adequate provision of services the lives of many parents and guardians can be saved and a quality of life prolonged. Primary healthcare centres (PHC) serve almost 35 million outpatients each year in Tamil Nadu and are crucial to the large rural population. However, in the states 2003 Human Development Report it was emphasised that PHC s were only capable of caring for minor ailments and not serious diseases. As a result the state has seen an expansion of unregulated private clinics whose main motivation has been profit as opposed to health service provision. The overwhelming emphasis of health care has been on necessary medical interventions, but at the expense of broader health and well being implications and consequently there has been a failure to address the long-term development needs of HIV positive children or to prevent children being orphaned. However, in comparison to overall health care provision across India, Tamil Nadu fairs well and does not mirror the national short falls in health care facilities. Tamil Nadu has committed significant energy in improving education indicators through the provision of goods and services. It has been particularly progressive with regards to incentive programmes for child enrolment in schools. For example, the State has schemes to provide

5 inclusive education for disabled children, disbursal of free text books and uniforms, provision of free bus passes, scholarships to girl students, assistance to highly talented students and the creation of parent teacher associations. Notably, the State has an educational assistance scheme to children whose bread winning father or mother has died or is permanently incapacitated through an accident. The extension of such a scheme to include OVC would be invaluable to those affected. Drop out rates have also shown a steady decline, in 2005/06 they stood at 2.7%, 5.2%, 42.5% and 69.5% for primary, middle, high school and higher secondary schools respectively. This was down from 14.3%, 35.1% 57.6% and 71.5% in This suggests that investment in public education and incentive programmes continue to reap positive results for those fortunate enough to be enrolled in the education system. Education therefore provides part of the solution in escaping vulnerabilities through increased awareness of social/health issues and in particular assists in overcoming ignorance and half truths with regards to HIV and AIDS. Many associated barriers such as, access to services and the ability to avail them are dramatically improved with the removal of this exclusion. Social welfare is an essential public service and helps OVC who suffer from the impact of losing a parent/guardian and/or household provider through the most challenging and vulnerable times. The state has pursued many protective measures in the form of contributory pension schemes, retirement benefits, survival benefits and social welfare schemes. Pension support has significant benefits for OVC as often it is the elderly who shoulder the burden of care. The 2003 State Human Development Report has shown that public expenditure on pension and retirement benefits have risen dramatically between 1991 and 2001, as have the number of pensioners. It is important to note that pension schemes only contribute to the financial assistance necessary for care; provisions must also be made for the physical and emotional support required through a child s development. The State s Department of Social Welfare has also developed a range of schemes that potentially address OVC related issues, and if not denied access through stigma and discrimination, OVC and their carers can benefit from these provisions. Those of relevance include; marriage assistance, adoption services, orphanages, supply of free sewing machines, protection for neglected and abandoned children, nutritious meals for children, pensioner schemes and combating commercial sexual exploitation of women and children. However, concerns have been raised over the ground reality and benefits of these schemes for PLHA. Notably, social welfare programmes in Tamil Nadu do not explicitly target OVC due to HIV and AIDS, nor is this desired if current schemes are fully inclusive and free from stigma and discrimination. India s children can often be overlooked in the response to HIV and AIDS when the focus is firmly on the sexually active population. There is a need to institutionalise the response to OVC due to HIV and AIDS, without necessarily institutionalising the children. There remains a need to mainstream and integrate HIV and AIDS responses in public goods and services so as to avoid stigma and discrimination and the provision and access to them made equitable for all. Furthermore, an overall OVC response must recognise the required treatment, care and support for carers, families and households who deal with the consequential burdens. Particular scope exists for leadership and advocacy at the national level by UNAIDS and NACO. Social welfare schemes serve as progressive examples in tackling social challenges. Tamil Nadu acts as a good example to others that regardless of restricted per capita income; health, education and social development indicators can be improved. This is driven by sustained political will and effectively targeted investment that reaches the most vulnerable. It would appear the State is in a better position than most to absorb the future impact of OVC through gains in overall human development and its concerted efforts in the response to HIV and AIDS. This paper has looked at OVC due to HIV and AIDS through aspects of poverty and vulnerability and considered the responses to them through provision of goods and services, as a result the paper concludes; There is a need to tailor programme implementation to address the broader (individual, household, family, community) impact of OVC, due to HIV and AIDS. Programme implementation must also address the deeper (social and economic) impact of OVC. Stigma and discrimination remain major obstacles to OVC, due to HIV and AIDS, in accessing health, education and social welfare services and significantly, this extends to those affected household members. Consequently, the means of addressing these challenges is best served through building the capacities and mainstreaming OVC, due to HIV and AIDS in public goods/services through family and community interventions.

6 OVC Related Figures Data Area (All India) Known or estimated figures Total number of children in India. (Children on the brink, 2004) 400,000,000 Total number of orphans (all causes). (Children on the brink, 2004) Total number of orphans (all causes) in (UNICEF, 2008) Number of HIV positive children in India. (UNAIDS, 2004) Number of children below the age of 15 infected with HIV. (NACO, 2007) Number of children infected every year through mother to child transmission. (NACO, 2007) Number of children (0-17) infected with HIV at birth each year. (NACO, 2007) Number of children infected vertically. (UNICEF, Barrier Study, 2007) Number of reported AIDS cases through mother to child transmission. (AVERT, 2006) Number of reported AIDS cases in children below the age of 14. (AVERT, 2006) Number of children orphaned due to AIDS, (UNICEF, Barrier Study, 2007) Number of children with an HIV positive parent. (UNICEF, Barrier Study, 2007) 35,000,000 (estimated) 25,700,000 (estimated) 202,000 (estimated) 70,000 (estimated) 21,000 57,000 (estimated) 150,000 (estimated) 4,755 5,596 (4.48% of all reported cases) 1,500,000 (estimated) 7,000,000 (estimated) ART coverage for children and adults across India Less than 25% Number of households affected by HIV. (Current research, 2008) Number of household members affected by HIV. (Current Research, 2008) Number of households with one or more member aged 60 or more. (Census, 2001) 696,888 (estimated) 3,693,505 (estimated) 58,266,894 Population of persons aged 60 and above. (Census, 2001) 76,391,870

7 Data Area (Tamil Nadu) Number of projected AIDS cases through mother to child transmission. (Using AVERT data, 2006) Number of projected AIDS cases in children below the age of 14. (Using AVERT data, 2006) Statistical modelling of number of children infected by HIV. (USAID, 2006) Statistical modelling of number of children (0-14) symptomatic of AIDS. (USAID, 2006) Number of HIV positive pregnancy s each year. (USAID, 2006) Known or estimated figures 1,977 (estimated) 2,331 (estimated) 14,465 (estimated) 3,220 (estimated) 9,000 (estimated) Number of children receiving ART. (TANSACS, 2008) 2,312 Number of children registered at ART Centres. (TANSACS, 2008) 5,983 Reported number of OVC. (TANSACS, 2008) 18,651 NGO investigation into number of orphans and single orphans due to AIDS in the area of NGO s operation. (USAID, 2005) Number of children affected by AIDS. (USAID, 2006) Number of street children in Chennai (1996). (USAID, 2006) 1,600 48,190 (estimated) 75,000 (estimated) Number of children availing CHILDLINE. (USAID, 2006) 22,743 Number of identified trafficked children below the age of 16. (UNIFEM, 2004) Number of child labourers in main and marginal work. (Census, 1991) Combined number of children working in the fireworks, match making, diamond and gemstone, and domestic labour industries. (Various sources, 1996/97) Number of children in bonded labour. (UN working group, 1996) Number of households affected by HIV. (2008) Number of household members affected by HIV. (2008) Number of households with one or more member aged 60 or more. (Census, 2001) ,000 71,280 (estimated) 100,000 (estimated) 98,464 (estimated) 413,549 (estimated) 4,420,519 Population of persons aged 60 and above. (Census, 2001) 5,481,873

8 How does the provision of public goods and services affect the response to Orphaned and Vulnerable Children (OVC) due to HIV and AIDS? 1.0 INTRODUCTION This research paper investigates the plight of orphans and vulnerable children as a result of HIV and AIDS in India. Specifically, it analyses currently available data (limited with regards to OVC) and assesses the present situation in the high prevalence state of Tamil Nadu as a case study. The purpose is to explore the short, medium and long term consequences of the provision of public goods and services necessary to support OVC. It further considers the existing and future impact on individuals, households, communities and society as a whole, analysing current responses from the Government of India (GOI), the State Government of Tamil Nadu, as well as the international community. It identifies best practice OVC solutions from within and outside the state and highlights the guiding factors of successful policy and programming. In addition, the implications for households and communities are considered, particularly when faced with increased vulnerability and risk of poverty traps, compounded by OVC issues and influenced by inadequate support structures. The research is based on the premise that it is of equal importance to understand the wider socio-economic implications brought about by OVC, particularly with regards to the burden and breakdown of family and social networks and the burden on public and private welfare structures. It is considered that with current numbers of OVC, due to HIV and AIDS, combined with associated challenges and wider implications, the needs of this population group are not adequately met. The focus of interventions has largely centred on the affected individual; however, greater emphasis must also be placed on the impact to households and communities. High prevalence states already burdened with the responsibilities of addressing the epidemic among the adult population, must take responsibility for the social and economic impact affecting these sections of society. Where endemic poverty is the norm, social responsibility to provide public goods and services is paramount, in particular, adequate education, health and social welfare that address the issues of OVC. Without such safety nets the impact of OVC, in real terms, will be compounded for hundreds of thousands of households and many communities across India. The most vulnerable in society can only hope of escaping a poverty and vulnerability trap with adequate provision of public goods and services. 1

9 The development of universal public sector institutions (education, health and social welfare) and the removal of barriers of stigma and discrimination is a key area of analysis that can potentially improve the circumstances of people affected by OVC due to HIV and AIDS. In addition to political will, innovation and social empowerment, will only then the medium and long term impact of OVC due to HIV and AIDS be realised and addressed. On paper Tamil Nadu provides a positive example of public good and service provision in addition to many social welfare innovations with the likes of educational assistance and household disaster relief programmes. This paper will explore the ground reality of such general service provision in the State, as well as investigate the complimentary and specific interventions under the National Aids Control Programme (NACP), State Aids Control Organisations (SACS), and NGOs. The subject of OVC is faced with dilemmas in terms of what constitutes an orphan, who counts as a vulnerable child, how are these groups measured, if at all, and how are public services to be assessed in their response. The subject area is further and importantly restricted by the lack of hard data relating to numbers of OVC due to HIV and AIDS. This is particularly the case in India where national estimations have not been attempted because the country does not have a national generalised epidemic. However, the vast population size and prolonged nature of OVC issues means that its true impact is yet to be felt and its scope not to be underestimated. In addition, data collections are further obstructed as people live in secret, in fear of discrimination and exclusion, or are oblivious to their HIV status. Those that believe or suspect they are HIV positive believe the help they get by revealing their status is less than the suffering this disclosure will cause, both to them and those closest to them. 1 Irrespective of the impact at a household and community level, the significance of recognising the current status of OVC at the individual level should be obvious, as it is here from which wider implications stem and in particular the future burdens to social, economic and welfare structures. Consequently, a degree of reference has been made to estimates of orphan numbers due to HIV and AIDS at the national level, though largely through inferred approximations and even these are broad and contradictory depending on chosen sources. The HIV and AIDS epidemic has a long wave length period and without ART intervention the incubation time between infection and the onset of illness is believed to be in the region of five and eight years. 2 The limited number of people accessing ART in India means the impact of orphan hood due to AIDS will be an ongoing burden to individuals, households, communities and importantly welfare structures. Currently in India, there is less than 25% coverage of antiretroviral therapy for adults and children with advanced HIV and this is also the case for 1 UNICEF, The Barrier Study, July 2007, P.7 2 Barnett and Whiteside, AIDS in the Twenty-First Century Disease and Globalisation, Palgrave, 2006, P.52 2

10 coverage of antiretrovirals for the prevention of mother to child transmission. 3 HIV and AIDS orphans reflect the history of the epidemic; therefore health and social support structures must be in place to accommodate any projected impact. Furthermore, without adequate coverage of ART and sustained prevention measures certain groups of children will remain vulnerable to infection and affected by HIV and AIDS. Consequently, there can be no place for ignorance regarding the impact of OVC. 3 UNAIDS, 2008 Report On The Global AIDS Epidemic, P

11 1.1 - DEFINITIONS: OVC is the term used to refer to orphans and vulnerable children within the HIV and AIDS epidemic; however, under this label there exist a number of interpretations of who is included and who is not. Consequently, differences between definitions must be accounted for when understanding and interpreting OVC estimates. There is also a need to establish the most inclusive definition of OVC in order to understand the extent and potential impact of associated issues. Orphans (due to HIV and AIDS) UNAIDS has historically defined an orphan as a child under 15, who has lost either both parents (double orphan), or the mother (maternal orphan) 4 However, in the latest 2008 UNAIDS Global Epidemic Report the organisation defined an orphan due to AIDS as a child who had lost their mother or father or both parents to AIDS and who were alive and under [the] age [of] 17 UNICEF s definition of an AIDS orphan is a child who has at least one parent dead from AIDS 5 and a double AIDS orphan as a child whose mother and father have both died, at least one due to AIDS 6 In contrast to UNAIDS historical definition, the 2004 edition of Children on the Brink, recognised the period of childhood as up to the age of 18 and remains more inclusive than UNAIDS criteria. As a result, it incorporates the significant number of adolescent orphans and vulnerable adolescents due to HIV and AIDS and acknowledges the parental responsibility/duty of care throughout this period as per international standards. 7 Importantly, the UNAIDS definition used to estimate global and national orphan figures, due to HIV and AIDS, has traditionally excluded this proportion of adolescents and until 2008 had overlooked paternal orphans, suggesting that orphan figures are in fact greater than those stated in official projections. The importance of including paternal orphans in statistics is evident when; often in male dominated societies the household dependence on the economic provision of the father is significant and if lost due to AIDS has multiple implications on the household. Also, in many cases both parents are found to be HIV+ and therefore it is only a matter of time before the child becomes a double orphan and in patrilineal groups when a child s father dies, the child is effectively a double orphan because the mother is sent away or leaves to remarry elsewhere. 8 4 Barnett and Whiteside, AIDS in the Twenty-First Century Disease and Globalisation, Palgrave, 2006, P UNAIDS, UNICEF and USAID, Children on the Brink, July 2004, P.33 6 Ibid. 7 Barnett and Whiteside, AIDS in the Twenty-First Century Disease and Globalisation, Palgrave, 2006, P Ibid. 4

12 Therefore, for the purpose of this study it is important to recognise orphan hood, due to HIV and AIDS, in its broadest sense, so as to be fully inclusive of the wider and deeper implications of OVC. An orphan, due to HIV and AIDS, should therefore be understood as; a child under the age of 18, who has lost either a mother (maternal orphan), father (paternal orphan) or both parents (double orphan) with at least one to AIDS. Vulnerable Children Defining whether a child is vulnerable to HIV and AIDS is a more complicated task due to the huge varieties of vulnerability and is reflected by UNICEF s breakdown of children affected by the epidemic in The Barrier Study, of July In it, classifications of children orphaned by AIDS, children with HIV positive parents, children who are HIV positive and vulnerable children are identified. In this instance, children orphaned by AIDS (referred to above) and children with HIV positive parents are concerned with the indirect affects of HIV and AIDS, for example, dealing with the affects of an HIV positive household member. Children who are HIV positive are concerned with the direct affects of the epidemic and vulnerable children in this context are threatened only by the increased vulnerability to the risk of infection. This is as a result of the high risk environments they find themselves in, for example; street children, child prisoners, child labourers and children of sex workers. 9 The latter groups are extremely important in their own right, however, this study is primarily centred around the vulnerability of those directly or indirectly affected, and as such concerns the vulnerability of children s rights and wellbeing in relation to the wider (household and community) and deeper (social, economic, health/welfare) HIV and AIDS implications. It is important to recognise the distinction between types of vulnerability as this further reflects the different approaches required in terms of support and prevention strategies. Those vulnerable to the affects of HIV and AIDS require support and those vulnerable to infection require greater emphasis on prevention measures. Vulnerable children in this context can therefore be defined as; a child under the age of 18 who is either directly or indirectly affected by HIV and AIDS and who is vulnerable to the risk of HIV infection. 9 UNICEF, The Barrier Study, July 2007, P.9 5

13 1.2 - ORPHANED AND VULNERABLE CHILDREN (OVC) - INDIA OVERVIEW Across India it is estimated that 70,000 children below the age of 15 are infected with HIV and 21,000 children are infected every year through mother to child transmission. 10 In UNICEF s Barrier Study, it was stated that NACO estimated some 57,000 children (0-17) were infected with HIV at birth each year and in 2004, UNAIDS estimated that 202,000 children were HIV positive in India. 11 The latest research to consider estimates was the Barrier Study, which has summarised the estimated numbers of children affected by HIV and AIDS. At the time of the study it suggested approximately 150,000 children were infected vertically, 1,500,000 were orphaned due to AIDS and 7,000,000 had HIV positive parents. These figures are not mutually exclusive as affected children can fall into multiple categories; however, it serves as a reflection of the countries present status and challenge posed from children directly and indirectly affected by HIV and AIDS. Unfortunately, official UNAIDS estimates and indicators of orphans due to AIDS are only provided for countries with generalised epidemics. As such, in the 2008 Report on the Global AIDS Epidemic no estimates of orphans due to AIDS were given for India as it is no longer considered to be in this category. This is arguably a significant oversight due to the vast population size of the country and the wider implications associated with significant numbers of orphans and vulnerable children. The UNICEF Barrier Study also identified children vulnerable to HIV and AIDS, however, these were not measured, as a result of being vulnerable to infection rather than to the affects of HIV and AIDS and considered a prevention priority which was not within the studies remit. In terms of vulnerability profiling this is a hugely important group as has been outlined previously and significantly, the figures involved are vast and amount to tens of millions of children. 12 It is among these groups that specific awareness and prevention programmes must be focused to reduce the prevalence of the direct affects of HIV and AIDS impacting on the vulnerable child population. The total number of orphans (all reasons) in India was estimated and projected in Children on the Brink and for 2003 out of a total of 400 million children, the total number of orphans was believed to be 35,000,000 across the country. This equates to 9% of all children. Projected estimates suggest this figure will reduce to 8% of all children by 2010, amounting to 32,300, Using stated estimates, approximately 4% (1,500,000) of orphans in 2003 could be attributed to HIV and AIDS. However, UNICEF has documented that total orphan numbers across India in 2005 were estimated to be far lower than these estimations. For the year NACO, Policy Framework for Children and AIDS India, July 2007, P.6 11 UNICEF, The Barrier Study, July 2007, P.8 12 Ibid. P.9 13 UNAIDS, UNICEF and USAID, Children on the Brink, July 2004, P

14 they conclude that numbers of orphans due to all causes was in the region of 25,700, If the number of orphans due to HIV and AIDS is to be considered a fair approximation then the percentage figure for 2005 rises to 6% of orphans due to HIV and AIDS. A lack of survey data in the subject matter demonstrates the minefield faced with conflicting estimates and projections. This is even more apparent with regards to accurately understanding and targeting the ground reality of orphan numbers due to HIV and AIDS, let alone the wider impact on households and communities and the risks to vulnerable children. Changes in orphan numbers can also be misleading, for example, movements in overall orphan numbers may mask increases or decreases in specific causes of orphan hood. For example, trends may be contradicted when analysing orphan numbers due to HIV and AIDS, as rising numbers of people become infected and loose their life to AIDS over an extended period of time, yet without mapping the cause any response becomes difficult to target. Furthermore, the nature of HIV and AIDS means its impact on orphan hood is a medium to long term event and therefore orphan figures today reflect only a proportion of those in the future. The number of orphans is expected to more than double in five years and remain exceptionally high until 2020 or 2030 the epidemics impact will linger for decades even if the rate of new infections is brought under control. 15 In addition, declining trends also reflect the number of orphans moving out of the statistically defined age group of an orphan. An orphan is no longer considered as such once they reach the age of 18; yet, the consequences of orphan hood are felt for many years. It is also important to note that quantitative orphan estimates cannot convey the hardship of which individuals; households and communities go through, either having lost a household member to AIDS or barely surviving with someone living with HIV. The Positive Women Network also highlighted the issue of counting OVC numbers, suggesting it was particularly difficult to advocate on the subject where few hard facts are known. The network s experience suggests that reported figures don t reflect the actual situation and therefore a huge percentage of infected OVC and affected individuals are not recognised. If concrete figures were defined there is a potential argument for making children and OVC a targeted intervention group, as currently, the focus of efforts and resources are drawn towards TIs. OVC lacks that focus and as a result provides little scope for child focused interventions. 16 Surveillance data in particular relating to orphaned and vulnerable children, due to HIV and AIDS, is distinctly lacking both at the national and state level; this is no different for the state 14 UNICEF Website, (Accessed on 08/07/08) 15 At-A-Glance India: AIDS and Orphans, 16 PWN+, Field Visit to Tamil Nadu, 16/09/08 7

15 of Tamil Nadu. Most recent qualitative surveys looking into OVC issues are dependant on such logical estimations. Data issues are further compounded when exploring the epidemic among OVC at a localised level, as official data sources are also reliant on national surveillance structures. Data pertaining to the HIV prevalence and number of deaths due to AIDS among OVC are unavailable for Tamil Nadu; although, certain inferences can be made using available adult prevalence rates. However, to focus simply on numbers of OVC infected is to miss the broader impact faced by this section of dependants. The loss of a parent, guardian or household member can have significant consequences on a child s life and the implications are felt more widely and deeply within households, communities and across societies. 8

16 2.0 TAMIL NADU - STATE PROFILE Tamil Nadu can be found on the South Eastern tip of India and is surrounded by the Bay of Bengal to the East, the Indian Ocean to the South, the states of Kerala and Karnataka to the West and Karnataka and Andhra Pradesh to the North. The state is divided in two main areas; the Eastern coastal plain and the mountainous region to the West and North. The Western Ghats are a steep and rugged mass averaging 1,220 metres above the sea level and rising to 2,440 metres at the highest point 17 The slopes are covered with heavy ever green forests and the only noticeable break in this mountainous region is a 25 km opening called the Palaghat Gap. Significantly, mountainous and rural areas pose complications for those in need of essential health, education and social welfare support. Difficult to reach areas can result in individuals, households and communities becoming physically excluded from accessing these services. However, as is demonstrated in latter sections Tamil Nadu has shown it is possible to meet required standards in service coverage, yet still faces barriers through social exclusion. Tamil Nadu is the fourth largest state in the country; it is made up of an area of 130,058 sq. km. and has a total population of 62.4 million. It therefore has a significant population size to tailor goods and services, across 30 districts, 385 blocks and 16,317 villages. 18 The State has a population density of 478 persons per sq km, as against the national average of 312 per sq km. 19 The high population density suggests there is greater potential for the impact of OVC due to HIV and AIDS to be more broadly felt beyond the individual level as households and communities are closely interrelated. The decadal growth rate of the state is 11.72%, against 21.5% for all India and in 2007 the crude birth rate stood at 16.2 per 1000, below the India level of 23.5 per The crude death rate in the state matched that of all India at 7.5 per This demonstrates that in comparison to all India, Tamil Nadu has gained a significant degree of control over it s population growth, essential if goods and services are to be managed, distributed and budgeted for effectively now and in the future. The state has a high Scheduled Caste population, in the region of 11.9 million people, and is a significant reason for why 21% of the population are still below the poverty line. More positively Tamil Nadu boasts a high state literacy rate of 73.5% and significantly, this includes a high percentage of literate females (64.4% - 17,714,883) in comparison to a national figure of 53.7%. 20 In addition, the proportion of literate men in the state stood at 82.4% or 22,809,662 individuals. These positive social development indicators are largely as a result of consistent investment and improvements in the public good/service of education. 17 Government of India, Ministry of Health and family Welfare, 18 Ibid. 19 Economy Watch, 20 Ibid. 9

17 The total fertility rate of Tamil Nadu was 1.7 in 2006, well below the India level of 2.9. The states infant mortality rate (IMR) stood at 37 in 2007 and the maternal mortality (MMR) ratio 134, contrasted against the all India figures of 57 and 301 respectively. According to SRS, life expectancy at birth for Tamil Nadu, , was 65.2 years for males and 67.6 for females. It is significant that in all districts female LEB exceeded male LEB and in 10 of the 29 districts female LEB was over 70 years. 21 Demonstrating that life expectancy at birth has steadily improved and total fertility rates have shown declining trends, again largely as a result of the states commitment to the public good/service of adequate healthcare provision. Consequently, in terms of human development rankings Tamil Nadu has achieved comparative successes. The overall HDI value for the State in 2001 was as compared to for all India and therefore currently ranks third among the 15 major states in the Index. 22 The State still has room for improvement; however, most notably gains have been made in education, health and social development, for example; The literacy rate has been increasing progressively, and the government has invested forcefully in the rural education infrastructure. This has resulted in a growth in years of schooling to 6.4 years which is much higher than the national average of 5.5 years making Tamil Nadu a close third to Kerala (8.1) and Maharashtra (7.1). 23 It is important to make the point that such gains have been achieved despite low per capita income levels and with further improvements in economic indicators social, health and educational gains will only be consolidated. All India and Tamil Nadu demographic and socio-economic profile 24 S. No. Item Tamil Nadu India 1 Total population (Census 2001) (in million) Decadal Growth (Census 2001) (%) Crude Birth Rate (SRS 2007) Crude Death Rate (SRS 2007) Total Fertility Rate (SRS 2006) Infant Mortality Rate (SRS 2007) Maternal Mortality Ratio (SRS ) Sex Ratio (Census 2001) Population below Poverty line (%) Schedule Caste population (in million) Schedule Tribe population (in million) Female Literacy Rate (Census 2001) (%) UNDP, Synopsis of Tamil Nadu HDR, 2003, P.6 22 Ibid. P.2 23 Ibid. P.1 24 Government of India, Ministry of Health and family Welfare, 10

18 Significantly, 55% of the population of Tamil Nadu were classed as non workers in 2001, with the bulk of this group made up of students and dependants. 40% of non workers were students, 25 31% were dependants and 21% undertook household duties as their main activity. The category of note with regards to OVC is that of dependants such as infants or very elderly people not included in the category of worker [and] pensioners those who are drawing pension after retirement and are not engaged in any economic activity. 26 Often it is household members from these non working categories that are significantly affected and often shoulder much of the burden of care. This therefore highlights the potential economic impact to households and individuals who find themselves inadvertently responsible for OVC due to HIV and AIDS and do not have the means to provide for those affected. Significant decreases in poverty levels have been made over preceding decades and the most recent census data suggests the proportion of Tamil Nadu s population found below the poverty line was well under the all India figure of 26.1%. Importantly, some 21.1%, or 13.2 million people still manage to survive within this category, approximately 8 million of which were in rural areas and 5 million in urban areas. 27 Latest figures also show that the greatest poverty levels are predominately found among Scheduled Castes and Tribes, where per cent of urban households and per cent of rural households live below the poverty line. 28 District wise Tamil Nadu has six, with over 40% poverty rates, five at a moderate level of 30-40% and the bulk of districts with low poverty below a level of 30%. 29 This merely emphasises the breadth of poverty across the state and demonstrates that even with human development success the presence of poverty is still widely and deeply felt. This therefore has notable consequences for the OVC vulnerabilities across the state. 25 Government of India, Census 2001, 26 Government of India, Census 2001, 27 UNDP, Synopsis of Tamil Nadu HDR, 2003, P.5 28 Ibid. 29 Ibid. 11

19 2.1 - MIGRATION PATTERNS Tamil Nadu is not extraordinary in its migrant patterns but still has a significant amount of population movement. This has significant implications on areas of child trafficking, as migration patterns can often mask the movement of children and child vulnerability through youth marriage, highlighted in census migration figures. In addition, migration patterns affect the states ability to direct public goods and services to changing populations. Importantly Tamil Nadu is within the top third of most migration categories in comparison to other parts of India. The state has the eighth highest level of intra district population movement, is ninth highest in terms of inter district movement, only sixteenth with respect to inter state migration and out of 36 states/union territories has the eighth highest level of international migration. 30 However, in terms of urban/rural movements Tamil Nadu has the highest rate of urban to urban migration at 27.4% (1,001,633). It has the fifth highest urban to rural migration rate of 11.5% (420,815) and the sixth highest rural to urban migration rate at 23.3% (852,824). Most people stated other as the main reason for their migration, yet a significant number (4,166,516) of all migrants gave marriage as the main reason for their movement. 4,014,022 of these were women, suggesting the gendered nature of marriage with females facing an obligation to move. Of a total of 15,824,383 migrants in Tamil Nadu 8,038,253 were non workers and combined with 1,020,935 non workers seeking or available for work made up over 50% of all migrants. This further highlights a potential vulnerability of those moving in, out and across the state to provide for households if affected through OVC due to HIV and AIDS. Most migrants were literate but with a below secondary level education (6,226,434) and within this category more literate female migrants were identified than literate men (3,389,871 as opposed to 2,836,563). This contradicts the usual trend of greater illiteracy among women and if accurate is a positive sign of increased migrating women being in a better position to deal with socio-economic challenges. (See appendix for data references) In terms of the movement of youth, figures are not comprehensive, however, of those aged between 0-19 and measured with respect to marital status the number was 1,214,180. Of these, 1,114,215 had never been married, 98,799 ten to nineteen year olds were currently married (95,439 were females). 741 ten to nineteen year olds were widowed (619 widows) and 425 were divorced and separated (336 females). This gives a brief insight into the potential vulnerability and challenge of youth marriage in the state. Particularly where vulnerability to the impact of HIV and AIDS is increased when education levels of married youth are reduced as marriage has been chosen at the expense of schooling. (See appendix for data references) 30 Government of India, Census 2001, 12

20 3.0 TAMIL NADU EPIDEMIOLOGICAL PROFILE An understanding of the past and current HIV and AIDS epidemic in the state is particularly relevant as this serves as an indicator of the historic and current impact of OVC due to HIV and AIDS. In 1986, the first case of HIV in India was identified in the state of Tamil Nadu (Chennai) and today [it] has about 240,000 people suffering from the infection. 31 Four South Indian states, namely Andhra Pradesh, Karnataka, Maharashtra and Tamil Nadu, account for the majority of people living with HIV. However, across these states the epidemic is varied and is often concentrated in certain districts. According to expanded 2006 sentinel surveillance data Tamil Nadu has shown a declining prevalence among pregnant women, however, high HIV prevalence among sex workers, and rising prevalence among injecting drug users and men who have sex with men remains a concern. Although, through effective prevention programmes Tamil Nadu, has shown some success and HIV prevalence is on the decline among sex workers 32 Tamil Nadu has seen a steady decline in HIV prevalence among pregnant women (agreed as a broad indicator of the epidemic among the sexually active general population) across 52 consistent sites in the state between 2003 and This is demonstrated with an ANC prevalence of 0.5% in 2003, 0.67% in 2004, a return to 0.5% in 2005 and 0.25% in However, the National Family Health Survey reported an adult HIV prevalence figure of 0.34% for the year 2007, which would equate to approximately 212,000 people based on 2001 census population figures. 34 According to latest sentinel surveillance data overall HIV prevalence among ANC clinic attendees has gradually declined at the state level. However, 13 ANC sites [from a total of 64] have shown HIV prevalence >1% among ANC clinic attendees. 35 The districts with the highest prevalence among ANC women were Namakkal, Salem and Tiruchirapalli with 3%, 3% and 2.5% rates respectively. These areas are also of greater concern with regards to OVC, due to HIV and AIDS, as the higher ANC prevalence rates would suggest the potential household, family and community impact will be more widely and deeply felt. Out of 11 STD sites 8 have reported HIV prevalence of >5%, while Madurai (24.8%) and Tirunalveli (19.6%) have displayed rates of more than 15% and are the highest across the state. Across high risk groups (HRG) prevalence levels are particularly concerning. 4 out of 11 FSW [Female Sex Worker] sites, 2 out of 2 IDU [Intravenous Drug User] sites and 1 out of 2 MSM [Men who have Sex with Men] sites have shown HIV Prevalence >5%. HIV Prevalence at IDU sites is 31 MedIndia.com, (Accessed on 28/07/08) 32 UNAIDS, AIDS Epidemic Update, December 2007, P NACO, HIV Fact sheets, November 2007, P UNAIDS, AIDS Epidemic Update, December 2007, P NACO, HIV Fact sheets, November 2007, P.74 13

21 greater than 15%. 36 For obvious reasons children of individuals in HRG are faced with the increased vulnerability to both the direct and indirect affects of HIV and AIDS. The scope for HRG households to access public goods and services to overcome HIV and AIDS vulnerabilities and impacts is particularly concerning as often these groups are some of the most socially excluded in society. Despite the relative successes in reducing the overall prevalence rate it is evident that much is still to be done to address prevalence and behaviour change, significantly in relation to HRG and those taking unnecessary risks in terms of HIV prevalence at STD sites. The table below displays the prevalence rates across the various measured population groups between the period of 2003 and ANC STD FSW MSM IDU According to the National AIDS Control Organisation (NACO) Tamil Nadu currently has 22 category A districts, 5 category B districts and 3 category C districts out of a total of 30 in the state. The significance of this in contrast to the latest surveillance district figures is that state categorisation reflects a three year time lag of the epidemic and therefore gives a more accurate reflection of priority target areas, particularly in terms of OVC programmes as HIV prevalence today does not resemble the current OVC impact. What is does serve to demonstrate is the breadth and depth of the epidemic in Tamil Nadu and how the majority of districts have been significantly impacted. It further emphasises the need to recognise and prepare for future increases in numbers of orphans due to AIDS and vulnerable children, based on these historical categories rather than current reduced prevalence levels. (See appendix) Furthermore the period between 2003 and 2006 has seen an overall increase in the number of districts moving into higher categories. Eight of which moved up to a category A district throughout this time period and of those descending districts two moved from A to B and only one from B to C. This again demonstrates the significant impact and concentration of 36 NACO, HIV Fact sheets, November 2007, P Ibid. 14

22 the epidemic in contrast to overall downward trends in prevalence. The importance for programme implementation and the epidemics accumulation in these areas covering just a three year period is reflected in the increased numbers of high category districts. The declining trend of overall HIV prevalence in the state is positive and with sustained efforts this figure can be further reduced, in addition to the locations where prevalence is particularly high among HRG. However, the importance of stating the historical trend is a reflection of how the state epidemic will influence OVC numbers, in the coming years. The concentrations of people living with HIV continue to struggle, indirectly impacting many vulnerable children. Without life prolonging ART these people will ultimately die from AIDS, creating an increase in orphan numbers, resulting in wider and deeper socio-economic implications. 15

23 3.1 - TAMIL NADU STATE AIDS CONTROL SOCIETY (TANSACS) TANSACS is the primary state organisation in the response to HIV and AIDS and acts as a useful source to the states epidemic status and OVC impact. In order to institutionalise the response to HIV, in January 1993 the State AIDS Project Cell was formed. In May 1994 this was reconstituted as the Tamil Nadu State AIDS Control Society and under this framework the organisation has been mandated to oversee the implementation of the National AIDS Control Programme (NACP), currently in its third stage. 38 Under this programme the SACS organisations and TANSACS in particular pursues the following main strategy and programming components; blood safety and training, targeted interventions (TI), control of sexually transmitted diseases, information education and communication (IEC), care and support for AIDS patients, training, sentinel surveillance, programme management, advocacy and social mobilisation. 39 Tamil Nadu SACS is addressing the HIV and AIDS epidemic using various strategies, namely, awareness creation among sub populations, offering support to grassroots infrastructure, the establishment of STD clinics in all districts, equipment up gradation, access and provision of alternative medicine and the free distribution of condoms throughout the state. Specialist treatment is provided in all the STD clinics free of cost. [Also] HIV and AIDS cases are treated as in-patients in Government Hospitals of Thoracic Medicine, Tambaram, Government General Hospital and also in Medical College Hospitals for all opportunistic infections, free of cost. 40 As a sign of TANSACS progression by December 1999, approximately 762,426 blood samples had been screened... The results revealed 14,750 HIV positive cases of which 4,354 persons were found to have developed AIDS. 41 In March 2001, there were a reported 9,714 AIDS cases from hospitals and clinics across the state and in the space of two years this figure had risen to 24,667 reported cases (August 2003). Of those 24,667 cases, 6,391 were added in the first eight months of 2003 alone. 42 Across India, by August 2006, a total of 124,995 cumulative AIDS cases had been reported, of these a staggering 42% (52,036) originated in the state of Tamil Nadu. 43 Not only does this reflect the acceleration of the epidemic throughout Tamil Nadu, but also the improvement in identification and detection of cases. These statistics refer to the number of reported AIDS cases, which only acts as an indicator of the potential severity of the total epidemic. In many situations a patient will die without an HIV diagnosis, with often the death attributed to an opportunistic infection. Indeed, the majority of HIV and AIDS cases go unreported due to individuals being unaware of their status. 38 TANSACS, (Accessed on 04/08/08) 39 Ibid. 40 TANSACS, (Accessed on 04/08/08) 41 TANSACS, (Accessed on 04/08/08) 42 Population Foundation of India, Tamil Nadu HIV and AIDS in India The Hard-hit States, (Accessed on 05/08/08) 43 Avert, India HIV & AIDS Statistics, (Accessed on 05/08/08) 16

24 3.2 - REPORTED AIDS CASES Tamil Nadu s 52,036 reported AIDS cases can be further placed into context when considered against the breakdown of cases for all India, specifically, in terms of transmission category, age range and gender. Using the national percentage breakdowns applied to the state of Tamil Nadu an approximate breakdown can be inferred, assuming the proportional distribution of cases is similar at the state level. It must be considered that the reporting of HIV and AIDS differs significantly across the country and therefore the following projected figures merely act as a guide to the distribution of reported cases. However, as the highest percentage (42%) of reported cases comes from Tamil Nadu the probability these figures are a close representation is increased and also helps provide indications of the potential OVC impact. Reported AIDS cases across India and projected figures for Tamil Nadu, by transmission category, up to end of August 2006 Transmission Categories Number of cases (All India) 44 Projected cases based on national % distribution (Tamil Nadu) Sexual 106,669 44, % Mother-to-child 4,755 1, % Blood and blood products 2,563 1, % Injecting drug users 2,930 1, % Others (not specified) 8,078 3, % Total 124,995 52,036 (52,032) 100% (99.99%) (Percentage/total error due to rounding) % Using officially reported cases obviously has its limitations due to the vast number of those unreported due to stigma, lack of awareness and misdiagnosis. However, reported cases serve as an indication of what is definitely known and provides useful information about the distribution of the epidemic from confirmed cases. The above table therefore confirms the main transmission mode of HIV and AIDS in India to date has been through sexual activity (85%). For specified categories this is followed by mother to child transmission (3.8%), IDU (2.34%) and through blood/blood products (2.05%). 44 Avert, India HIV & AIDS Statistics, (Accessed on 05/08/08) 17

25 All India breakdowns of reported AIDS cases by age and gender to end of August Age group Male % Female % Total % , % 2, % 5, % , % 15, % 39, % , % 16, % 70, % 50 6, % 1, % 8, % Total 88, % (70.59%) (Percentage/total error due to rounding = 0.01%) 36, % 124, % (100.01%) The national breakdown of reported cases of AIDS shows a male bias in the distribution, amounting to just over 70%. The majority of cases are found within the defined sexually active population group of 15 to 49 (89%) and unfortunately figures are not disaggregated for children, as defined internationally from 0 to 18. Consequently, the figure of officially reported AIDS cases in children is higher than that stated, as many are lost to the 15 to 29 category. This data analysis also dispels the myth that HIV and AIDS only affects the sexually active population between the ages of 15 and % of children below the age of 14 have reportedly developed AIDS and almost 7% of reported cases were found among the over 50 population. Projected breakdowns of reported AIDS cases by age and gender to end of August 2006 based on national % distribution for Tamil Nadu Age group Male Female Total , , ,949 6,609 16, ,563 6,952 29, , ,627 Total 36,737 (36,732) 15,299 52,036 (52,041) (Error due to percentage rounding = 0.01%) As the table above is merely a projection of national percentage distributions on Tamil Nadu the same national conclusions apply. However, showing the projected number of individuals in each category gives a sense of those directly affected, among confirmed cases, at the state level. For example, more than 2,331 children have been directly affected by AIDS and across the remaining 49,710 individuals, the potential indirect affects to vulnerable children and of orphan hood, as a result of household deaths due to AIDS are apparent. It is also important to note this is simply a reflection of officially reported AIDS cases; the true scale of HIV and AIDS impact on OVC is far greater. Despite still pressing areas for intervention Tamil Nadu is viewed as a success story in the response to HIV and AIDS and this is ultimately demonstrated by the states successful attempts at reducing overall prevalence levels. 45 Avert, India HIV & AIDS Statistics, (Accessed on 05/08/08) 18

26 4.0 SITUATION AND VULNERABILITY ANALYSIS TAMIL NADU It has been demonstrated with the national overview of OVC that concrete data and comprehensive awareness of these specific issues is difficult to find. At the state level official estimations are also far and few between, however, a number of district level surveys and a rapid assessment from USAID have helped shed an amount of light on the subject matter. This is in addition to OVC estimates kindly provided by TANSACS. USAID has stated that in August 2005, TANSACS requested its NGO partner organisations to report on the number of known orphans and single orphans due to AIDS in their area of operation. From this investigation NGOs were only able to identify 1,600 cases. However, from an accumulation of data across eight districts some 4,819 children were identified as having been affected by AIDS. 46 It was stated that this number of children were benefiting from support by NGOs in Tamil Nadu, 47 however, was estimated to be less than 10% of the overall total. If this figure is projected to the total number of children affected by AIDS then this equates to in the region of 48,190 children affected across the state. The most recent data from TANSACS puts the reported figure of OVC at 18,651. The number of children registered to infected parents at Antiretroviral Treatment (ART) centres stood at 5,983 and the number of those on ART was 2,312 as of September This was up from 1,763 in September It was also emphasised that for every infected child there will be about 10 affected children in the community. 50 Therefore when considering the distribution of these children throughout households and communities the broader impact becomes even more apparent and must be accounted for in policy and programme implementation. Statistical modelling of the estimated number of children infected by HIV and symptomatic of AIDS has also been carried out. Allowing error for the quality of past surveillance data, at the time of modelling, it was estimated that the number of children infected by HIV in 2006 would be approximately 14,465, with an estimated 3,220 children (0-14) symptomatic of AIDS. 51 This is higher than the projected distributions of reported AIDS cases up to the same time period used in section 3.2, but allowing for unreported cases and surveillance data corrections the approximate projections in section 3.2 do not seem unreasonable. Further analysis of the statistical modelling showed that HIV infections among children increased from 14,322 [in the 46 USAID India, Rapid Assessment of Children Affected and Vulnerable to HIV/AIDS in Tamil Nadu, March 2006, P USAID, Providing Support to Children Affected by HIV and AIDS and Their Families in the Low Prevalence Countries of India and Cambodia: Programming Issues, March 2006, P TANSACS, Data provided by Deputy Director Monitoring and Evaluation, 09 September UN Briefing Paper, United Nations and Tamil Nadu State AIDS Control Society Campaign to protect the rights of people living with HIV, November TANSACS, Data provided by Deputy Director Monitoring and Evaluation, 09 September USAID India, Rapid Assessment of Children Affected and Vulnerable to HIV and AIDS in Tamil Nadu, March 2006, P.13 19

27 year 2000] to reach 15,697 in 2004 and then is showing a decreasing trend The estimated number of children showing symptoms of AIDS has also reached a peak of 3,370 in Statistical Modelling Projections on HIV and AIDS in Tamil Nadu 53 Years HIV infected* AIDS cases Infected children** AIDS symptomatic Children ** (*= all ages in million; **= 0-14 years) The numbers of children directly infected with HIV through transmission from mother to child is still significant. Tamil Nadu has about 9000 HIV positive pregnancy s every year, which can lead to 3000 children infected with HIV [assuming no ART intervention] and 6000 children affected with AIDS. 54 When this is placed in the national context the Task Force on Children and HIV and AIDS (coordinated by the Ministry of Women and Child Development) estimated that 57,000 children are infected every year through mother to child transmission. 55 In terms of known or estimated numbers of vulnerable children similar data obstacles arise and are further complicated with the vast numbers and diversity of vulnerable children in question. This group not only includes those directly vulnerable to infection through PTCT, but also those in circumstances which open them up to opportunistic infection arising from vulnerabilities through, for example, child labour, child prisoners, trafficking, children on the street and children of sex workers and drug users. The National Institute of Social Defence, in 1996, estimated there were about 75,000 street children in the city of Chennai alone. 56 A survey carried out by the Chennai Corporation and Karunalaya found that among 3,699 street children 409 (11%) had received treatment for [an] STI and a girl and boy tested positive for HIV. 57 USAID also highlighted from an unpublished study on street children, that out of 31 children referred for detoxification and who opted for HIV screening, 13 (42%) tested positive for HIV. 58 This shows the vulnerability link between street children, risk behaviour and the transmission of STI s. The child line welfare service, in operation since 1999, also provides an 52 USAID India, Rapid Assessment of Children Affected and Vulnerable to HIV and AIDS in Tamil Nadu, March 2006, P Ibid. 54 Ibid. P Ibid. P.9 56 Ibid. P Ibid. P Ibid. 20

28 indication of the numbers of vulnerable children in the state who have sought assistance, to date 1,404 children have requested shelter[,] 468 have asked for protection from abuse, 181 for emotional support and 20,690 calls from children have been silent on reasons. 59 Although specific numbers of each vulnerable child group are difficult to ascertain some have been reported across Tamil Nadu. In 2004, UNIFEM found that of 1,890 identified trafficked persons the number of children trafficked made up almost 30% (555). This figure only represented the number of children trafficked below the age of 16 and therefore doesn t account for the significant number of adolescents aged 17 and 18 in this group. These aspects of vulnerability are largely concerned with the increased risk of infection and therefore not the primary focus of analysis of this paper, however, once infected children become vulnerable to the direct and indirect affects of living with HIV and AIDS. This has consequences at the household, family and community levels, as well as the social, economic and cultural impact in terms of how affected households are economically sustained and the effects on social and cultural relationships/networks. Understanding the potential vulnerability to infection therefore has implications to understanding those affected and in turn how public goods and service provision is placed to address OVC. State-wise distribution of trafficked persons 60 State No. of trafficked persons No. of trafficked children Below 16 years Tamil Nadu 1, (29.3%) Child labour is not just a vulnerability area to infection but in those affected households where the bread winner has been incapacitated due to HIV or died due to AIDS children can be pushed into labour to support the household. From the dated 1991 census, it was demonstrated that specifically girl child labour made up a significant part of the rural work force in Tamil Nadu. The 1991 Census revealed the presence of over 606,000 child labourers in the main and marginal worker categories, with a large majority being girls. 61 In the rural areas, 10 per cent of girls in the age group 5-14 years were workers as against 4 per cent of male children. In the urban areas, the situation was better with 2.4 per cent of girls in the age group 5-14 years classified as workers as against 5.9 per cent of boys. Often it was seen that the drop outs at school were child workers at home and about 50 per cent of girls in the age group years belonged to this group USAID India, Rapid Assessment of Children Affected and Vulnerable to HIV and AIDS in Tamil Nadu, March 2006, P UNIFEM, Action Research on Trafficking in Women and Children, July 2004, P UNDP, Synopsis of Tamil Nadu HDR, 2003, P.9 62 Ibid. 21

29 Additional data regarding children in the labour market and in bonded labour are also relatively dated but demonstrate the past significant challenge within the state. In 1996/97, it was reported by the International Confederation of Free Trade Unions (ICFTU) that between 45,000 and 50,000 children were working in the fireworks and match industry of Sivakasi. Some 10,000 children were working in the diamond and gemstone Industry in Trichy and the US Department of Labour claimed that thousands of children may be employed in leather tanneries in Tamil Nadu. Some estimate that in the town of Dindigul alone, 30% of the tannery labour force is children. Furthermore, 11,280 children below the age of 14 years were involved in waged domestic chores across 19 towns in Tamil Nadu, reflecting the potential vulnerability associated with low wage domestic work. 63 A UN working group on Contemporary Forms of Slavery, in June 1996, also highlighted the significance of bonded child labour. A report by advocate Mohammed Siraj Sait and NGO activist Dr Felix Sugirtharaj submitted in the Supreme Court in February 1996 estimates that there are some 1 million bonded labourers in Tamil Nadu. Bonded labour was found to exist in substantial numbers in all the 23 districts of Tamil Nadu and in over 20 occupations The largest numbers of bonded children were in four industries: silkweaving, growing flowers, silver work and rolling bidi (local cigars). In the age group below 15, accounting for almost 10% of all those in bondage, there were almost as many girls as boys. 64 The cultural practice of Devadasai, where young girls from socially disadvantaged communities are offered to the Gods and become religious prostitutes 65 is a further area of vulnerability prevalent in many regions of Tamil Nadu (Chingleput, North Arcot, South Arcot, Thanjavur, Tirunelveli and Tiruchirapalli districts). 66 The numbers of Devadasai have became so numerous and widespread in South India that they emerged as a separate subcaste, with their own traditions, rules of behaviour and etiquette, and their own panchayat, whose decisions were binding on all members. 67 The main fear identified by USAID is that more than 50 percent of devadasai later on become CSW, of which nearly 40 percent join the sex trade in urban brothels and the remaining are involved in prostitution in their respective villages. 68 This culturally accepted practice creates obvious vulnerability to infection concerns for children and yet its scale remains largely unknown. Once infected and symptomatic of HIV and AIDS the scope moves from prevention to treatment and the role of public goods and services in addressing the broader and deeper impact increases for groups that then face stigma from HIV and AIDS but also discrimination through the social attitudes towards commercial sex work. 63 Shakti Vahini, Trafficking In India Report-2004, P Ibid. P USAID India, Rapid Assessment of Children Affected and Vulnerable to HIV and AIDS in Tamil Nadu, March 2006, P UNIFEM, Action Research on Trafficking in Women and Children, July 2004, P Ibid. P USAID India, Rapid Assessment of Children Affected and Vulnerable to HIV and AIDS in Tamil Nadu, March 2006, P.14 22

30 4.1 - CASE STUDIES OF ORPHAN HOOD AND VULNERABILITY Case studies provide a small insight into the types of challenges and vulnerabilities faced and potentially highlight the area of scope for public goods and services to address. They provide a window into the lives of those who struggle daily with the challenges posed by OVC due to HIV and AIDS and help place the wider research into a human context. Two such case studies can be sourced from the United Nations. (See appendix) The first reflects the reality of grandparents having to care for OVC due to HIV and AIDS, immediately demonstrating the broader impact of OVC situations. Specifically, the first case study recognises the practical implication of being unable to access regular treatment for the child through their grandparents. Consequently, the direct affects of HIV are even greater through the inability to follow strict ART drug regimes. Furthermore, this case study highlights the epidemic among children for the district of Krishnagiri. An estimate of 750 children living with HIV and AIDS was made in this district, with 102 confirmed cases of HIV among those tested. In addition, the case study highlights the increasing trend of paediatric AIDS cases. 69 The direct affects of caring for a child living with HIV and AIDS in the household are discussed at length in later sections, however, it is concerning that paediatric cases are rising and if combined with adult cases in the household the likely scenario for these children is inadequate care from a fellow household member or institutionalisation. In the later case this is only possible if the service is free from stigma and discrimination. The second case study also serves as an example of the challenges faced for PLHA and in particular the challenge of providing for themselves, as well as their children. Demonstrating a clear role for social welfare programmes to address the very practical broader and deeper impact of OVC due to HIV and AIDS. It also highlights a potential avenue to prioritise and target OVC in the household through support and assistance of the female household member. The suggestion is that using a gendered approach to OVC is preferred, as through the priorities of women and mothers their focus tends to best address the needs of children closely followed by the household. 70 The case study also raises the consequences of youth marriage both in the state and across India in general. Highlighting a practice of children having children, where low levels of education, life experience and sexual health awareness exist. This raises natural concerns of the increased risk of vulnerability to HIV infection for themselves and their children. It also has an impact on their ability to cope with the affects of the HIV and AIDS in the household. Importantly, the degree of social support required increases at the household and family levels for the uneducated and inexperienced children having children. Public goods 69 UNICEF Website, (Accessed on 28/07/08) 70 Muhammad Yunus, Banker to the Poor, Public Affairs New York, 2003, P.72 23

31 and services and in particular social welfare services have the opportunity to address those who have been earlier lost in the system through innovative support to carers and in this instance the potential of adult learning programmes. 24

32 4.2 HOUSEHOLD VULNERABILITY An analysis of how HIV and AIDS affect the household raises crucial implications for the impact on OVC, their carers and fellow household members Census data shows the total number of households in Tamil Nadu to be in the region of 14,665, The state has a mean average of 4.2 household members per household and is below the all India figure of 5.3 members per household. 72 On the basis of Tamil Nadu s mean household average, the projected population total of the sexually active (36,740,326) 73 and of those that are estimated to be HIV positive according to ANC prevalence (0.34%), the total number of households with an HIV positive sexually active individual is approximately 49,967. (This reflects the present situation with a state ANC prevalence of 0.34%, a more accurate representation of the household impact with regards to OVC is to calculate the number of households affected at the height of state ANC prevalence - See below.) This shows the extent of households affected by HIV and when translated in terms of population numbers, using the mean average of household members (4.2), it indirectly effects in the region of 209,861 household members. Using ANC figures (an indicator of HIV prevalence among the statistically accepted sexually active and child bearing population) from the height of Tamil Nadu s epidemic gives a very different picture of household impact. ANC prevalence amounted to 0.67% in 2004, at its peak, and using the same methodology effectively doubles the total number of households and household members affected by HIV and AIDS. The number of households with an HIV positive sexually active individual increases to approximately 98,464, which in turn equates to an affect on 413,549 household members. Excusing caveats, if just one household member is a child from these estimates then 98,464 children would also be vulnerable to HIV and AIDS and a potential AIDS orphan. Children in HIV and AIDS households are particularly vulnerable to the affects of the epidemic and will ultimately become orphaned without necessary interventions. Contrasting this, and using the same methodology, across all India, the following potential household impact estimates have been made Census data shows the total number of households in India to be in the region of 193,579,954 and the country has a mean average of 5.3 household members per household. On the basis of the countries mean household average, the projected population total of the sexually active (596,964,801) 74 and of those that are estimated to be HIV positive according to ANC prevalence (0.36%), the total number of 71 Government of India, Census 2001, 72 Government of India, Census 2001, (Accessed on 10/07/08), 73 NACO, Technical Report on HIV Estimation, 2006, P Ibid. 25

33 households with an HIV positive sexually active individual is approximately 696,888. (This reflects the situation in 2006, to use early prevalence data is problematic due to improvements that have been made in surveillance methodology.) This shows the extent of households affected by HIV and when translated in terms of population numbers, using the mean average of household members (5.3), it indirectly affects in the region of 3,693,505 household members. Once again excusing caveats, if just one household member is a child then nationally 696,888 children would also be vulnerable to HIV and AIDS and a potential AIDS orphan. (See appendix for calculations) The indirect impact of OVC on additional households, such as extended family or other social relations, means the number of affected by HIV and AIDS will be even higher due to shared burdens. When also considering vertical transmissions and the epidemic among those <15 and >49 the household impact will be greater still, although, allowances must be made for households with multiple people living with HIV. This demonstrates the scale of the household impact of OVC due to HIV and AIDS in Tamil Nadu. It identifies approximate numbers of households and household members affected at a particular point in time. Therefore actual totals must also reflect the period of time an individual is affected, in the case of a child (0-18 years), as well as account for the cumulative number of new infections year on year and the numbers of OVC moving out of the 0-18 age range. Children can be directly affected by HIV and AIDS through infection or exposed to a whole host of vulnerabilities through the loss of a parent/guardian. Children affected by HIV and AIDS are restricted from experiencing childhood, are burdened with responsibilities that are more common in later life and denied their human rights. 75 Often a child may be removed from school in order to complete household duties, or school absenteeism rates may rise as duties conflict with educational commitments. Furthermore, children are denied the ability to express themselves as such, and can suffer from deep rooted psychological trauma that has significant long term consequences if left untreated. AIDS threatens children s lives. The impacts of AIDS on children are both complex and multifaceted. Children suffer psychosocial distress and increasing material hardship due to AIDS. They may be pressed into service to care for ill and dying parents, required to drop out of school to help with farm or household work, or experience declining access to food and health services. Many are at risk of exclusion, abuse, discrimination, and stigma NACO, Policy Framework for Children and AIDS India, July 2007, P.3 76 UNAIDS, UNICEF and USAIDS, Children on the brink, 2002 P.4 26

34 Consequently, HIV and AIDS vulnerability in respect to children, adolescents and orphans must be seen in its broadest and deepest terms. A comprehensive understanding that accounts for both direct and indirect vulnerabilities is required, not only addressing individual health concerns and well being of children but the consequential well being and impact on households and communities. The impact of the epidemic can be seen in the economic and social deprivations it brings about demonstrated through children withdrawing from school to care for sick parents or earn additional income... [and] denial of basic services to affected children, especially health and education A UNDP study also identified that among HIV affected households more than a third were headed by widows. The study further shows that in such households there is higher school absenteeism among children and boys being withdrawn from school to earn income for the family. Conversely the study found that many widows who had no source of income and were denied parental and marital property were resorting to sex work in order to support their children. 78 Patriarchal societies have a profound impact on the vulnerability of women and consequently their children. As a result, women in the household have very limited knowledge of their legal rights and are largely dependant on husbands or male siblings. Household income and economic control remains predominantly with male members reinforcing the patriarchal dominance. Estimates show that more women and girls experience the rigours of poverty than men in poor households because of inequalities in access to food, healthcare and education. 79 When a male household member is incapacitated or lost to HIV and AIDS the consequences can be significant for mothers and children. The economic means to provide food, healthcare and education disappear and the capacity of the mother to step into these traditionally male functions is strained as a result of years spent in suppression and inferiority. Children may also find themselves in unexpected positions of responsibility with the loss of parents/guardians due to HIV or AIDS. This is demonstrated by the growing number of child headed households in the state and has been explored in detail by the India HIV/AIDS Alliance. In its report on child headed households it is clear that when orphaned, children are left to fend for themselves and often take on the responsibilities of managing the household and younger siblings with minimal to no financial support. 80 These economic and social deprivations are key factors which increase the vulnerability of children to HIV and AIDS and suggest a comprehensive response is necessary to deal with the broader and deeper aspects of this challenge. 77 NACO, Policy Framework for Children and AIDS India, July 2007, P.6 78 Ibid. P.8 79 UNDP, Synopsis of Tamil Nadu HDR, 2003, P.9 80 India HIV/ AIDS Alliance, A situational analysis of child-headed households and community foster care in Tamil Nadu and Andhra Pradesh States, India, 2006, P.2 27

35 4.3 - ELDERLY AND PROVIDERS OF CARE The elderly population is an overlooked group in the response to HIV and AIDS, specifically, in terms of the affect the epidemic has on households. It is therefore important to understand the impact on this group in relation to OVC, as often they shoulder much of the burden of care. 81 Importantly, the provision of social welfare for the elderly, or primary care givers, differs greatly across India, therefore the challenge of coping or surviving in later life often depends on the progressiveness of each respective state. Those that face extreme poverty or the affects of a person living with HIV and AIDS in the household often have to rely on accumulated assets or the intergenerational bargain to survive. 82 This is ultimately compromised in HIV and AIDS affected households where the elderly generation may be faced with a double lifetime burden, supporting younger members both as children and again as adults living with HIV. This burden may stretch even further with the death of the main income provider or parent/guardian, due to AIDS, and the consequential impact of orphaned and/or vulnerable children in the household. The changing generational roles that impact the welfare of the elderly, such as youth pursuing more individualistic lifestyles and breaking from traditional responsibilities, leaves an even greater burden on them to care for OVC. It must be considered that with improvements in health and social indicators, Tamil Nadu will also have to confront a consequential aging population. Globally and nationally the ratio of younger to older people is changing and people are generally living longer. Compounding matters is the extent to which the elderly are also aging. 83 Nationally this is demonstrated in increases from actual and projected figures for those aged 80 and over in India for 1998 and The percentage increase of over 180% in men and almost 250% in women for this 27 year period is staggering and among some of the highest in the world. This equates to a 6.7% and 9.1% rise year on year respectively. Population Indicators by age and sex (India) 84 Population aged 80 and over (000s) % change aged 80 and over, Aged 80 and over as % of 60 and over Male Female Male Female Male Female Male Female Male Female 2,956 2,790 8,309 9, Barnett and Whiteside, AIDS in the Twenty-First Century Disease and Globalisation, Palgrave, 2006, P Ibid. 83 Ibid. P Ibid. P

36 Elderly populations are often the poorest in society, they do not have the means to escape endemic poverty and can be physically and financially dependant on others. Without adequate social safety nets and faced with the effects of HIV and AIDS the dependence can further move to extended families and social networks. The elderly population also face donor discrimination as a result of being an institutionally unattractive group and often development bypasses their needs and concerns. Therefore, ignoring the household impact of HIV and AIDS and failing to recognise the needs of older people, who may also have a caring responsibility, leaves yet another population group extremely vulnerable to the affects of HIV and AIDS. The impact of having to care for orphans or vulnerable children as a result of an AIDS death in the household is an obvious strain on household incomes. This burden is importantly compounded for grandmothers as research has shown it is they who shoulder the majority of household responsibilities and struggle to care for multiple generations. It also demonstrates the deeper socio-economic impact of OVC through elderly/carers attempts to provide food for the household and maintain each child s education. There is enough evidence to show that again it is mostly the grandmother who has to shoulder the physical burden of feeding the children, sending the children to school etc. Instead of relying on the support of their adult children, these old persons have to take care of their children who are dying from AIDS related illnesses as well as subsequently take care of the orphaned grandchildren. 85 The distraction of supporting PLHA, orphans and vulnerable children also creates very real practical dilemmas for older people who do not have the time to continue with essential household responsibilities, such as obtaining food and water and therefore unable to cook, clean, wash clothes and maintain hygiene. The cycle of dependence continues but who is there to provide support once the extended family and social networks have been exhausted? The elderly are dependant; dependence requires support; support is found in social life; social life requires energy and inputs if it is to be maintained and reproduced the elderly lack the energy to make these investments; that is why children are important and why, when they die and their work, remittances and other support cease, the circumstances of an old person can decline dramatically. 86 In Tamil Nadu, 30% of households contain one or more persons aged 60 or above, 2.7 million of these are men and 2.75 million are women, totalling almost 5.5 million over 60 s. Based on the states peak ANC HIV prevalence if all HIV households were to include an elderly person this 85 NACO and UNDP, Socio-Economic Impact of HIV and AIDS in India, 2006, P Barnett and Whiteside, AIDS in the Twenty-First Century Disease and Globalisation, Palgrave, 2006, P

37 would indirectly affect 2.2% of the elderly household population or 120,601 over 60 s. If a mere 10% of HIV households were to contain an elderly person the epidemic would still impact on 0.22%, equating to 12,060 elderly individuals. The realistic impact figure will lie somewhere between these two projections and demonstrates the scale of elderly affected due to HIV and AIDS and the consequences of caring for OVC. Surveys in Tamil Nadu, or across India, have rarely taken into account the affects of HIV and AIDS upon the elderly population and its associated effects on individuals, households and communities. However, the potential household impact and its wider implications are evident from these estimates. Nationally, 30% of households also contain one or more persons aged 60 or above, 37.6 million are men and 38.8 million are women, totalling almost 76.4 million over 60 s (and rising). On the basis of the countries 2006 ANC prevalence if all HIV households were to include an elderly person this would indirectly affect 1.2% of the elderly household population or 916,702 over 60 s. Once again if a mere 10% of HIV households were to contain an elderly person the epidemic would still impact on 0.12%, equating to 91,670 elderly individuals. As was highlighted previously the realistic impact figure will lie somewhere between these two projections and demonstrates the scale of elderly affected. It is important to reiterate that India s population continues to age and the issue of OVC due to HIV/AIDS has a long wave length. These two facts combined means the impact and responsibilities of elderly household carers will increase in the coming years and therefore socially responsible states must acknowledge and prepare social welfare programmes that address their needs. 30

38 4.4 POVERTY, HEALTH AND EDUCATION Poverty is a process that afflicts people s lives in many different ways. As a result of being caught in economically and socially impoverished positions individuals and groups become increasingly vulnerable to a vicious cycle of poverty. People s opportunities to break free from it are greatly reduced with inadequate provision and access to education and the market place. Poverty remains one of the major reasons contributing to the spread of the virus. It is one of the driving forces behind migration, multi-partner sex and poor knowledge about HIV transmission. 87 The role of stigma and discrimination associated with HIV and AIDS further compounds people s capacity to move out of poverty as a result of barriers to public services. In UNICEF s The Barrier Study, 2007, these specific issues have been explored. In particular adults and children in Tamil Nadu referred to and prioritised the financial and health difficulties they experienced due to their illness. Caregivers also mentioned the tendency of relatives to separate affected children from their HIV-positive parents, and their concern that their children would be orphaned and become street children. 88 A key response in Tamil Nadu came in relation to the parents loss of income, eviction from rented accommodation and further difficulties in finding alternative housing, all as a result of their sero-status. This specifically demonstrates the deeper socio-economic impact of HIV and AIDS on families and households. It also highlights the associated link with poverty, the consequences of falling into it and the resulting increased vulnerability for affected children. In relation to educational barriers more than six out of every ten educational service providers interviewed in Tamil Nadu had come across examples of affected children being excluded from education 89 Adult caregivers noted that the most significant barrier to a child s education came from discrimination by teachers, in addition to that from fellow children in and outside of the classroom. This was also not restricted to infected children but also as a result of being associated with parents or household members living with HIV and AIDS. 90 Ironically, it is education, but correct education, which can overcome these discriminations. The classroom has a role to play, as does the education from parents in the home. Children in the survey often spoke of their friends behaving in a discriminatory way because their parents tell them not to play with affected children 91 This highlights the significant challenge faced by stigma and the ongoing battle of increasing HIV and AIDS awareness without impinging on the private sphere of the family. 87 USAID India, Rapid Assessment of Children Affected and Vulnerable to HIV and AIDS in Tamil Nadu, March 2006, P UNICEF, The Barrier Study, July 2007, P Ibid. P UNICEF, Barriers to children with HIV Positive Parents Tamil Nadu, July 2007, P.9 91 Ibid. P.23 31

39 In the case of access to health care facilities and services many of the obstacles also revolved around stigma and discrimination associated with HIV and AIDS. Children in the state identified the mistreatment they received at health care centres claiming doctors kept them waiting until last, failed to examine or treat them properly, referred them elsewhere, or simply refused treatment. 92 The study also showed that children in Tamil Nadu specifically prioritised the difficulty in reaching medical facilities and once there the problem of being admitted for care. Caregivers of affected children in all five states said the most important barrier in the health care context was the reluctance or refusal of doctors and staff to touch, examine, test or treat their children, with delays, referrals, hesitation and humiliation being the order of the day. 93 The table below, from the UNICEF Barrier Study, outlines the awareness levels of service providers regarding the exclusion of children affected by HIV and AIDS in the areas of well being, education and health. 94 Sector Wellbeing Education Health Barriers* 1 (%) 2 (%) 3 (%) 4 (%) 5 (%) 6 (%) 7 (%) 8 (%) 9 (%) Andhra Pradesh Karnataka Maharashtra Nagaland Tamil Nadu Average for question Average for sector * = Wellbeing barriers which: 1: affect the quality of life of the child. 2: affect the social relationships and self esteem of the child. 3: affect the ability o the child to influence decisions which affect him/ her. Education barriers which: Health barriers which: 4: affect the child s ability to get an education. 5: affect the quality of education given to the child. 6: affect the self-esteem, socialisation of the child. 7: affect the child s access to professional medical care. 8: affect the child s access to medical care at home. 9: subject the child to stigma in a health-care context. 92 UNICEF, The Barrier Study, July 2007, P Ibid. 94 Ibid. P.30 32

40 An analysis of service provider awareness levels, only serves as an indicator to the actual exclusions taking place. It can be interpreted in two ways; either as an indicator of the level of exclusions across services, or the degree of success of service providers in seeing them. With this in mind, the previous data shows Tamil Nadu as being below each sector average for eight out of nine categories. Significant awareness levels of exclusion can however be seen with regards to a child s ability to get an education (64%) and to access medical care at home (35%). Notable awareness levels of barriers to the quality of life of the child (24%) and the child s access to professional medical care (18%) were also found in the state. Tamil Nadu can therefore take tentative praise from these results in terms of its levels of service exclusion and serves as a positive example to others in reducing service stigma and discrimination. Importantly, poverty has major consequences on the access of adequate health care provision and in particular access to HIV and AIDS treatment and support. Having reduced capacities in education and health access significantly impairs the ability of individuals and groups to prevent and treat themselves from HIV and AIDS. With specific regard to children orphaned by AIDS they face particular deprivations of basic necessities including food, clothing, education and health care. This further leads to insecurity, mental trauma and discrimination by peer group and relatives. 95 The care of children in families and households with PLHA is a pressing concern. The ability to cover the cost of treatment and access necessary care within the health system and balance the needs of OVC places a particularly heavy burden on households. Notably, in Tamil Nadu caregivers prioritised the financial difficulties arising from their condition, which prevented them from obtaining health care for their children. 96 The role of stigma and discrimination therefore clearly extends beyond infected children to also affected household members, for example, targeted towards uninfected children or elderly carers living in an HIV and AIDS affected household. The financial means to access services is greatly restricted through economic poverty and in this respect the state has effectively reduced the proportion of those below the poverty line, arguably through the implementation of progressive public goods and services. However, 21% of the population still remains below this line (often linked with scheduled castes and tribes) and in this context remain highly vulnerable to the affects of HIV and AIDS. Social poverty also remains rife and is particularly associated with HIV and AIDS that of stigma and discrimination towards infected and affected people. Innovative public goods and services must therefore mainstream HIV and AIDS issues and address the broader reach of stigma and discrimination. 95 USAID India, Rapid Assessment of Children Affected and Vulnerable to HIV and AIDS in Tamil Nadu, March 2006, P Ibid. 33

41 4.5 - CHILD TRAFFICKING Child trafficking increases a child s vulnerability to HIV infection through the nature of the high risk environment; however, children are also vulnerable to trafficking as a result of the affects of HIV and AIDS. There is an integral connection between HIV and AIDS, gender and trafficking and therefore the risks posed to girl children are particularly great. 97 Girl trafficked children face the degrading perversions and exploitations meted out by multiple abusers often mak[ing] them highly susceptible to serious health hazards, including high risk of contracting HIV and AIDS at a very early age. 98 Trafficked children are subjected to a range of unimaginable physical and psychological trauma and girl children in particular are vulnerable to reproductive and other gender-specific health problems 99 In these situations there is minimal access to reproductive health care and consequently the long term health impact can be significant, specifically in relation to family planning, PTCT and raising children in HIV and AIDS affected households. In recognition of the connection between trafficking and the spread of the epidemic, UNAIDS has therefore identified this group as highly vulnerable to HIV and AIDS exposure and also has implications in creating further affected households. HIV and AIDS often leaves households incapable of supporting affected children and without adequate social support systems leads individuals and families towards extreme measures in order to improve their situation. When households and families reach such hopeless circumstances they may see no alternative but to push their children away, potentially into trafficking. Significantly, Tamil Nadu is one of four states from where the most trafficked people are sourced and is therefore a major area of concern. 100 It has been noted by UNIFEM that the districts of Salem, Virudhanagar and Villupuram are known vulnerable areas for trafficking of children for domestic labour. 101 Specifically, trafficked and bonded children have worked in the match manufacturing and textile industries of Sivakasi and Coimbatore respectively. 102 The scale of household deprivation, as a result of poverty but also the affects of HIV and AIDS are potentially significant factors that pushed many of these children towards bonded labour. Migration patterns for Tamil Nadu (see section 2.3) potentially mask organised forms of trafficking, particularly in the case of youth marriages. This does not always express itself in forms or inter-state trafficking as intra-state trafficking is also highly common to a number of states. This is particularly true for Tamil Nadu, where, out of a total of 156 interviewed 97 UNIFEM, Action Research on Trafficking in Women and Children, July 2004, P Ibid. P Ibid. P Save The Children Bal Raksha, Bharat UNIFEM, Action Research on Trafficking in Women and Children, July 2004, P Free The Slaves, Recovering Childhoods Combating Child Trafficking In Northern India, October 2005, P.32 34

42 trafficked victims, 148 (94.8 per cent) had been subjected to intra state trafficking. 103 In 2004, UNIFEM analysed the age breakdown of trafficked victims and notably, a quarter were children below 16 years of age and 65 per cent below 20 years of age. Among the former, 58.3 per cent are from the poor strata of society. Thus, children, especially from poor families, are most vulnerable to trafficking. 104 Interestingly, the Positive Women Network in Tamil Nadu raised the specific vulnerability of girl child marriage. In the networks experience at around the age of 14, infected girls were forced into marriage by parents so as to see they re daughters married before death of AIDS. This was the case even with months of awareness training and support targeted at the child and therefore mechanisms must be in place to address the broader family role and responsibility of girl child marriage. More broadly it was felt that basic trainings of OVC care and support were lacking through the family and community, this is therefore a priority area for intervention. 105 This highlights the intrinsic link between trafficking and poverty and if motivated through financial gain can lead to families struggling to cope with HIV and AIDS to marry off or abandon their children. Poverty, greed and traditions influence the movement of vulnerable people and in the case of young girls, become prime targets for exploitation. Young girls, whose education attainment is likely to be low and who are removed from family support networks, are increasingly vulnerable to the direct affects of HIV and AIDS. A high risk environment of child trafficking can lead to abuse, exploitation and sex work, where young girls are specifically preferred because they can put in more years of work as prostitutes, with high economic gains to be generated from their exploitation 106 The trafficked girl child has little or no sexual health education and no control over their circumstances, leaving them in a particularly precarious position. Unfortunately, comprehensive data relating to this area is limited due to its underground and criminal nature, but it clearly has implications for the spread of the epidemic as well its broader scope and deeper impact. This is particularly the case with the low education levels of young exploited girls who, one would expect, would hope to have families of their own in the future. An additional area of concern in Tamil Nadu and closely linked to child trafficking, is the emergence of child sex tourism. This is specifically fuelled by beliefs that in the developing world children can be exploited with minimal chances of detection and that many governments will turn a blind eye to such activities in order to encourage tourism and economic growth. 107 Furthermore, abusers are driven by misconceptions that children are less likely to contract 103 UNIFEM, Action Research on Trafficking in Women and Children, July 2004, P Ibid. P PWN+, Field Visit to Tamil Nadu, 15/09/ UNIFEM, Action Research on Trafficking in Women and Children, July P Ibid. P

43 sexually transmitted diseases hence sex with them is safe [and] sex with virgin girls cures HIV and AIDS. 108 Needless to say in the high risk trafficking environment there is no guarantee that these exploited and vulnerable children are STD free, whilst the later is a complete misnomer. OVC are therefore vulnerable to child trafficking as a result of the affects of HIV and AIDS and in turn trafficked children face an increased vulnerability to the risk of infection. 108 UNIFEM, Action Research on Trafficking in Women and Children, July P

44 4.6 - INSTITUTIONAL VULNERABILITY OVC are also vulnerable in institutional care settings. Firstly, children are vulnerable to the household affects of HIV and AIDS; for example, children may be forced into institutions through orphan hood, the reduced household capacity to provide food, clothing or shelter, or the refusal of family members to care for them as a result of stigma and discrimination. Secondly, where institutional care lacks the proper oversight and regulation children can become particularly vulnerable to the risk of HIV infection through sexual abuse. More broadly, the care provided at many institutional care homes may not be adequate and fail to address the needs and well being of OVC. In these instances disreputable care homes contribute to the suffering of children who have already lost loved ones, battle daily against associated stigma and discrimination and contend with the psychological trauma these events bring about. Furthermore, the provision and investment in care homes is extremely limited. Often investment in services is not adequate and therefore NGOs are found filling the public good and service gap for OVC. Although not the main focus of this paper it is extremely important to emphasise the vulnerability to the risk of infection in poor quality care homes. This is even more significant as the traditional approach towards care of disadvantaged children has been one of institutionalisation in India. This is largely as a result of the recognition throughout history that vast numbers of children are without parental care and are in need of support and protection. 109 In the Study on Child Abuse: India 2007 it was revealed that 56.37% [of] children in institutions across the country were subjected to physical abuse by staff members This highlights the scale of abuse across institutional care and the potential vulnerability to the risk of HIV infection if physical abuse transcends into sexual abuse. At the State level a number of examples of child exploitation have also been identified. Two significant examples have been documented and serve as a stark reminder of the distorted nature of certain people and the exploitation of service provision to source their victims. In such circumstances vulnerability to HIV infection is greatly increased and children, institutionalised due to AIDS, continue to suffer from some of the gravest abuses imaginable. Government institutions are the only organs than have the legitimacy to provide oversight and regulation of both public and private care facilities for OVC. In situations where the government fails to do this the consequences are significant for OVC and are demonstrated by the examples that follow. 109 Ministry of Women and Child Development, Government of India, Study on child abuse: India: 2007, P Ibid. 37

45 Good Samaritan 111 In a well-known case, Will Heum, a Dutch national, who posed as a Good Samaritan, set up an orphanage called Little Home in Poonjeri village, 3 KM from Mahabalipuram in Kanchipuram district. There were 42 school children (19 girls and 23 boys) in the age group of years in the orphanage. Heum used to drug the children and subject them to sexual abuse. His crimes were exposed when one of the children escaped and filed a complaint with the police. During the police investigation it transpired that in the name of charity, Heum, with the help of his wife, had been abusing the inmates of the orphanage over the past eight years. The total number of abused victims is not yet fully known. Heum also entertained a large number of foreigners at his place, and allowed them to sexually exploit the children. Running an orphanage 112 In a well-known and well-publicised case in Tamil Nadu, a Swami of a religious sect, running an orphanage in a sprawling campus, was found to be a child abuser. A large number of children residing in the orphanage were exploited by the accused over a long period of time. The sordid happenings in the orphanage came to light when the police raided the place on the complaint of an escaped child and arrested the Swami. These examples show that respected individuals are able to manipulate a public service provision for their own perverted means. The risk of HIV infection is also more than apparent through the sexual abuse in these reported cases and the length of time for which these cruelties went unreported is particularly worrisome. It is also important to highlight the link between the sexual exploitation of children by foreigners in the Good Samaritan example, noting that these institutions potentially serve as cover for the practice of sexual tourism. In many situations it is necessary, or indeed the only option to resort to institutional care for OVC. However, adequate facilities are often few and far between and if available the issue of stigma and discrimination continues to follow children affected by HIV and AIDS. Best practice suggests that the provision of care and support can be achieved through family and household networks; yet, these also fail to shield against stigma and discrimination. If institutionalisation of OVC issues is used as a last resort then it is the responsibility of the state to ensure necessary safeguards are in place to regulate facilities of both public and private institutions. 111 Ministry of Women and Child Development, Government of India, Study on child abuse: India: 2007, P UNIFEM, Action Research on Trafficking in Women and Children, July 2004, P

46 4.7 - CYCLE OF VULNERABILITY 113 The diagram below, taken from The Framework for the Protection, Care and Support of Orphans and Vulnerable Children Living in a World with HIV and AIDS, provides an outline of the key vulnerabilities and the consequential links to the indirect and direct affects of the epidemic to OVC, families and households discussed throughout this section. It provides a useful diagrammatic representation of the vulnerabilities faced as a result of HIV infection in the household and in turn, how this leads to the increased vulnerability to the risk of infection. Problems Among Children and Families Affected by HIV and HIV infection Increasingly serious illness Children may become caregivers Psychosocial distress Economic problems Deaths of parent and young children Problems with inheritance Children withdraw from school Children without adequate adult care Inadequate food Problems with shelter and material need Reduced access to health services Discrimination Exploitative child labour Sexual exploitation Life on the street Increased vulnerability to HIV infection Source: UNAIDS/UNICEF, The Framework fir the protection, Care and Support of Orphans and Vulnerable Children Living in a World with HIV and AIDS, July 2004, P UNAIDS and UNICEF, The Framework for the Protection, Care and Support of Orphans and Vulnerable Children Living in a World with HIV and AIDS, July 2004, P.8 39

47 5.0 ANALYSIS OF OVC AND PUBLIC GOOD/SERVICE PROVISION The focus of this section is the structure, policy and programming status of health, education and social welfare services, in relation to OVC in the state of Tamil Nadu. The analysis of these services is based on the assumption that their provision is a necessary public good, which in turn has significant and positive implications for human development, general population health, an effective response to HIV and AIDS, and specifically a positive impact on OVC, in addition to affected individuals, households and communities. Although these areas are the primary focus of this section it is important to note from the outset that additional public goods such as the provision of adequate roads, electricity, water and sanitation are also essential and key infrastructures that contribute to an individuals health, well being and ability to access services. In any state these should be given ample resources to flourish in order to benefit all and not just the few. Sustained investment and quality management of these public goods is required to firstly improve access to health and education facilities and for social welfare programmes to reach those in need and secondly, is significant in improving and maintaining the health of the general population in addition to those affected by HIV and AIDS. This section has also been greatly aided by the inputs and discussions with regional State, and International Organisations, in addition to local networks and international NGOs and therefore many thanks must go to these organisations for their inputs. 40

48 5.1 - HEALTH CARE Primary health care and HIV and AIDS services are essential public goods in terms of treatment to the sick and neediest. Through accessible and adequate provision of services the lives of many parents and guardians can be saved and a quality of life prolonged. This should be treated as the primary objective in any OVC policy as keeping the parents alive and healthy is optimal to providing loving care and support for their children. At the level of the child, paediatric health care for those infected by HIV, but also affected, for example in terms of psychological support, is an obvious necessity but something not always present. This analysis therefore investigates the institutional healthcare provision in this area in addition to identifiable obstacles and service gaps. Primary healthcare centres (PHC) serve almost 35 million outpatients 114 each year and are crucial to the large rural population in Tamil Nadu. Approximately 45 million people live in rural areas and this demonstrates the high levels of service up take of a primary public good. However, in the states 2003 Human Development Report it was emphasised that PHC s were only capable of caring for minor ailments and not serious diseases. As a result of this the state has seen an expansion of unregulated private clinics whose main motivation has been profit as opposed to health service provision. This has understandably had an impact on the ability of the poor and socially excluded from accessing adequate health care. The expansion of the private sector has led to an increased inequality in access to health services. The poor and underprivileged, schedule castes and tribes cannot afford the costs of the private hospitals 115 This not only raises issues of highly vulnerable groups being unable to receive necessary care at the primary level if public services are inadequate and private clinics not within their financial means, but also highlights the inability of PHC s to effectively offer provision for serious diseases of which HIV and AIDS care is one. USAID, in its 2006 Rapid Assessment of Children Affected and Vulnerable to HIV and AIDS also highlighted a number of concerns with regards to the capacity of primary health facilities in Tamil Nadu to specifically address the needs of children affected by HIV and AIDS. 116 The focus of concerns rests largely in the scope and quality of service provision at PPTCT facilities across the state. The overwhelming emphasis has been on medical interventions rather than broader health and well being implications and 114 UNDP, Synopsis of Tamil Nadu HDR, 2003, P Ibid. 116 USAID India, Rapid Assessment of Children Affected and Vulnerable to HIV and AIDS, Tamil Nadu, March 2006, P.29 41

49 consequently there has been a failure to address the long-term development needs of the HIV positive children or to prevent children being orphaned. 117 The state of Tamil Nadu has an admirable goal of Health for All and has demonstrated a public commitment with increases in Government expenditure within the health sector; however, as its 2003 human development report underlined the State needs to focus more on disease control rather than its management and in so doing mainstream the likes of HIV and AIDS within the public health system. In addition, the specific issue of OVC due to HIV and AIDS can be addressed within a mainstream environment that aims to reduce the stigma, discrimination and social exclusion of those affected. Incorporating such approaches within a broad family health and reproductive environment enables key transmission issues, such as mother to child transmission during pregnancy, labour, delivery or breastfeeding to be addressed. Once a pregnant woman is infected, there is a 35 per cent chance that without intervention she will pass the virus on during pregnancy, birth or breastfeeding. 118 The timely and correct use of ART can greatly reduce the likelihood of transmission in these circumstances and is therefore a primary health tool in the prevention and response to HIV. In terms of health sector sensitisation programmes these have been implemented from the top down, and as a result very little discrimination exits at the governmental level, as all departments and relevant persons are aware of HIV. Furthermore, as ART centres increase in number and expand so does the awareness and sensitisation at grassroots level. 119 The health sector has seen comprehensive sensitisation schemes through qualified doctors, student doctors and currently staff nurses in paediatric care wards dealing with children in front line services. 120 It has also been noted that TANSACS has recently provided particularly good leadership in the area of PPTCT in Tamil Nadu. Although highlighted as a positive example of programming it was felt by local NGOs and networks that there is a continued need for greater monitoring, follow up, care and support. It was also stated that health facilities are not currently able to address the required breadth and depth of the OVC challenge. 121 The State has also been progressive in providing and extending coverage of institutional births and health care to mothers and children in institutional settings. However, once this care moves into the home healthcare providers are unprepared for the broader and deeper social/health challenges. This can be demonstrated through medical advice not to breast feed if a patient is 117 USAID India, Rapid Assessment of Children Affected and Vulnerable to HIV and AIDS, Tamil Nadu, March 2006, P UNICEF, State of Asia-Pacific s Children 2008, P TANSACS Field Visit to Tamil Nadu 15/09/ UNICEF Regional Office, Field Visit to Tamil Nadu, 16/09/ World Vision, Field Visit to Tamil Nadu, 17/09/08 42

50 HIV positive, yet the social consequences of not doing so for the woman in the household can result in great stigma and discrimination by the family. 122 In comparison to health care provision across all India the State of Tamil Nadu fairs relatively well. The Rand Centre for Asia Pacific Policy identified that in 2005 India had 10 percent fewer SCs and PHCs than needed and 50 percent fewer community health centres (CHCs) than needed. 123 However, these shortfalls in sub, primary and community centres are not mirrored in the State. In fact it has exceeded the required number of SC and PHC by 23% and 1% respectively and has a 19% shortfall in the number of CHC in position. A further consideration, although difficult to verify without quantitative surveys, is the physical accessibility of health facilities. The same Rand study suggested that across India transportation may be a serious barrier, since public transportation between PHCs or CHCs and state hospitals is irregular and infrequent, while private transportation is expensive 124 The financial difficulties are also apparent and have a significant impact for both rural and urban populations at the best of times. This is further compounded with individuals and households having to deal with the affects of OVC due to HIV and AIDS, particularly when almost 80 percent of health care expenses are paid out of pocket by patients. 125 OVC, carers and households are therefore in an extremely precarious position when burdened with the additional expense of caring for OVC, and/or providing, having lost an income source due to the death of a household member through AIDS. It is also important to note the proportion of children living in villages with no health facility [has] increased from 43 to 47 percent 126 across India. The isolation and exclusion of OVC due to HIV and AIDS means that some of the most vulnerable groups are not therefore in a position to access essential health care and support even if they wanted. Medical health care is a frontline service provision in the response to HIV and AIDS and is necessary to address issues of treatment and care, specifically in the case of PPTCT. However, it is through the expansion and quality of education and social welfare provisions that the wider socio-economic concerns of OVC due to HIV and AIDS can be addressed. Detailed but incomplete tables of the health infrastructure across Tamil Nadu and available data on human resources across these sites can be found on the following page. 122 UNICEF Regional Office, Field Visit to Tamil Nadu, 16/09/ Sai Ma and Neeraj Sood, Rand Centre For Asia Pacific Policy, A Comparison of the Health Systems in China and India, 2008, P Ibid. 125 Ibid. 126 Ibid. 43

51 Health Infrastructure of Tamil Nadu 127 Particulars Required In position Shortfall Sub-centre Primary Health Centre Community Health Centre Multipurpose worker (Female)/ANM at Sub Centres & PHCs Health Worker (Male) MPW(M) at Sub Centres Health Assistant (Female)/LHV at PHCs Health Assistant (Male) at PHCs Doctor at PHCs Obstetricians & Gynaecologists at CHCs 236 NA NA Physicians at CHCs 236 NA NA Paediatricians at CHCs 236 NA NA Total specialists at CHCs Radiographers 236 NA NA Pharmacist Laboratory Technicians Nurse/Midwife 2833 NA NA (Source: RHS Bulletin, March 2007, M/O Health & F.W., GOI) Other Health Institutions in the State of Tamil Nadu: 128 Health Institution Number Medical College 25 District Hospitals 29 Referral Hospitals 100 City Family Welfare Centre 104 Rural Dispensaries 1421 Ayurvedic Hospitals 9 Ayurvedic Dispensaries 32 Unani Hospitals 1 Unani Dispensaries 21 Homeopathic Hospitals - Homeopathic Dispensary Government of India, Ministry of Health and family Welfare, Ibid. 44

52 5.2 - EDUCATION Education provides part of the solution in escaping vulnerabilities through increased awareness of social/health issues and in particular assists in overcoming ignorance and half truths with regards to HIV and AIDS. It also enables an individual to enhance and utilise their abilities and move beyond the grips of poverty. Many associated barriers such as, access to services and the ability to avail them disappear with the removal of social exclusion from education. Investment and commitment to comprehensive education therefore has a profound impact on the capacity of individuals and households to deal with the affects of OVC due to HIV and AIDS. In the space of 60 years Tamil Nadu has dramatically improved its literacy rates from a time when it was comparable to the 1941 all India figure to being ranked third, in 2001, among the major states across the country. 129 More recently the State has seen overall literacy levels rise from 62.7 per cent in 1991 to in individual figures for male and female literacy showed that by 2001 it had reached 82% and 65% respectively. In addition the gender ratio gap for literacy levels fell from 1.4 in 1999 to 1.27 in 2001, suggesting positive strides have been made in addressing educational attainment and gender inequalities. 131 Tamil Nadu has also been particularly progressive with regards to incentive programmes for child enrolment in schools. For example, Noon Meal Schemes have been extended across both urban and rural areas, to children between the ages of 2 to 15 years. Further incentives, have seen over 6 million children benefit as a result and enrolment rates rose significantly throughout the 70 s and 80 s until the 90 s where rates declined (attributed to falling birth rates). 132 Such service provision reduces the vulnerability of children to move towards the grips of poverty and deprivation and in turn helps keep them informed of the risks posed through HIV and AIDS. The States 2003 Human Development Report showed that drop out rates at the primary level [have] recorded a steady fall in the last decade with the male drop out rate being per cent and the female rate being per cent. 133 However, UNIFEM highlighted they remained high among school children and in particular girls. In July 2004, they reported that at the primary level, it is per cent, going up to per cent at the middle level, per cent at the high school level and per cent at the higher secondary level. 134 Official figures from the Government of Tamil Nadu confirm the steady decline in child drop out rates 129 UNDP, Synopsis of Tamil Nadu HDR, 2003, P Ibid. 131 Ibid. 132 Ibid. 133 Ibid. 134 UNIFEM, Action Research on Trafficking in Women and Children, July 2004, P.43 45

53 and from the most recent 2005/06 data continues to show significant improvements. Throughout this reporting period total drop out rates stood at 2.7%, 5.2%, 42.5% and 69.5% for primary, middle, high school and higher secondary school respectively. This suggests that investment in public education policy and incentive programmes continue to show positive results for those fortunate enough to be enrolled in the education system and as always displays the progress still to be achieved Boys Girls Total a. Up to Primary stage b. Up to Middle stage c. Up to High School stage d. Up to Higher Sec. Stage Boys Girls Total a. Up to Primary stage b. Up to Middle stage c. Up to High School stage d. Up to Higher Sec. Stage Boys Girls Total a. Up to Primary stage b. Up to Middle stage c. Up to High School stage d. Up to Higher Sec. Stage In 2003, Tamil Nadu had already met the required criteria of every 300 people having a primary school within a distance of 1 km 136 and the pupil-teacher ratio for primary schools at this time (38) was better than the national average of 40. Latest figures for 2006/07 suggest that continued improvement has been made with the primary school pupil-teacher ratio now at 32. Figures for the average number of students per institution, pupil-teacher ratios and numbers of schools per lakh of population, in addition to numbers of facilities across the state can be found in the appendix giving an overview of the infrastructure of education across the state. What is implied here from the improvements made in public education services is that a child s ability to cope with future social, health and economic challenges is greatly enhanced. Essentially those that are fortunate enough to attend a full education have the means to a more prosperous life and less likely to succumb to the affects of OVC due to HIV and AIDS. 135 Government of Tamil Nadu, Department of Economics and Statistics, Statistical Hand Book, 2007, UNDP, Synopsis of Tamil Nadu HDR, 2003, P

54 STATE EDUCATION SCHEMES Tamil Nadu has outlined a number of inclusive goals and schemes over the past decades aimed at addressing the social good of education in the State. These efforts continue today through the School Education Department s 2008/09 Citizen s Charter. Within this document a range of issues are covered from accessibility schemes to infrastructure improvements, supply of essential materials to educational grants. The Directorate of Elementary Education, for example, aims to have all school age children admitted into an education establishment and all of these obtain a minimum education standard of level V, providing each with basic educational skills. In addition, at the elementary level, the State has schemes to provide inclusive education for disabled children, disbursal of free text books and uniforms, provision of free bus passes, scholarships to girl students, assistance to highly talented students and the creation of parent teacher associations. 137 All of these programmes are inclusive of OVC due to HIV and AIDS, however, the extent to which they are availed by this group is brought into question largely as a result of lack of awareness of support schemes. Broadly, across the school education programme a provision has been made to assist Adi Dravida, Tribal, Most Backward Denotified Communities through a Backward Communities Welfare Scholarship. 138 This shows that the State of Tamil Nadu is both aware and is addressing the need to provide educational assistance to some of its most vulnerable groups. This can only have a positive effect on their standard of living, improve their awareness of HIV and AIDS issues, reduce their vulnerability to its impact and specifically increase their capacity to manage their response in the context of OVC due to HIV and AIDS. The scale of illiteracy among disadvantaged groups remains significant and although much success has been achieved sustained and continued efforts are necessary. Notably, the State of Tamil Nadu has an educational assistance scheme to children whose bread winning father or mother has died or is permanently incapacitated through an accident. In these circumstances an educational scholarship of Rs.50,000 is deposited in a joint bank account of the student and surviving parent/guardian, to be used for the child s education in school. 139 The extension of such a scheme to include OVC would be invaluable to those affected. However, this should not be an exclusive scheme for OVC due to HIV and AIDS but all inclusive for children who have lost parents/guardians for whatever reason to avoid issues of stigma and discrimination. This point is made as often affected individuals are not 137 Government of Tamil Nadu, School Education Department, Citizen s Charter, , P Ibid. 139 Ibid. P.18 47

55 willing to access goods and services due to the knock on effects this can potentially have among the family, households and communities. The State also has a number of programmes aimed at adult learning which is an extremely important component of raising the capacity of those previously neglected by the education system. Current adult learning schemes aim to impart literacy to non-literates in the age groups, [provide] post literacy for neo-literates for sustaining literacy skills [and] provide an opportunity to enhance education for aspiring drop outs and others 140 The State has also broadened programming efforts to target illiterate women in backward districts, a residual illiteracy programme to target those women overlooked and provision of a National Institute for Open Schooling. 141 The importance of these schemes cannot be emphasised enough, they provide opportunities to vulnerable adults and carers of OVC to improve their circumstances. It enables them to avail services previously neglected, provide a route to escape poverty traps and undertake productive economic options as a result of raising their educational standard or simply becoming literate. Importantly, every effort must be made to ensure these generalised services are made available to those affected by OVC due to HIV and AIDS and awareness levels of such services improved for the most vulnerable. 140 Government of Tamil Nadu, School Education Department, Citizen s Charter, , P Ibid. P

56 5.3 - SOCIAL WELFARE Social welfare is an essential public service and helps OVC who suffer from the impact of losing a parent/guardian and/or household provider through the most challenging and vulnerable times. It also offers essential support to vulnerable carers who often become responsible for the welfare of OVC within the household. The destructive impact of OVC due to HIV and AIDS means that these issues must be considered within any state welfare structure where HIV and AIDS vulnerability or prevalence is high and responses incorporated into existing programming and policy so as to avoid stigma and discrimination. Similar allowances should also be made for a growing elderly population that often shoulder the burden of care for such children. For those who do not have the means financially or emotionally to support OVC, essential assistance ought to be provided. If at all possible this should be within safe and familiar household environments, not only to avoid undue disruption to people s lives, but also to reduce the upheaval brought by institutional care and the burden this places on welfare systems. Institutional care may be necessary as a last resort and in these instances a quality, accessible and safe service must be provided to all OVC, free from stigma and discrimination. The practice of state initiated social security provision is a relatively new area for government policy, although not a new phenomena in India. Traditional forms of protective measures in the form of contributory pension schemes, retirement benefits, survival benefits and social welfare schemes can be seen in many states to differing degrees. The State of Tamil Nadu is no exception and has in fact been more progressive than many in establishing important safety nets for the most vulnerable sections of the community. These include contributory benefits in the form of pensions and retirement benefits to government employees, survivor benefits for the workers of the unorganised sector, provident fund and other benefits for workers in factories and other commercial establishments, benefits and welfare schemes for the unorganised sector workers and social assistance schemes for women such as marriage and maternity assistance, old age pension etc. 142 Pensioner support is a significant and growing area of social assistance for all states across India, brought about by an aging population through higher fertility and falling mortality rates. The elderly are also living to riper ages and are increasingly becoming more vulnerable to socio-economic impacts. This is further complicated in modern times where traditional support systems, through generational bargains, are on the decline as youth pursue more individualistic lifestyles. Again this is something to which the State of Tamil Nadu is not immune. 142 UNDP, Synopsis of Tamil Nadu HDR, 2003, P

57 Pension support has significant consequences for OVC as often it is the elderly who end up caring for them after the loss of a parent or guardian. A pension may just provide enough financial support for the elderly individual to survive but what if this must be split between four household members and cover the costs of supporting OVC? The 2003 State Human Development Report has shown that public expenditure on the payment of pensions and other retirement benefits has steadily increased over the years from Rs billion in to Rs billion in For the same time period the number of pensioners in the state had increased from 230,000 to 413,000 and State Government figures for 2006/07 show this number has increased significantly in the last five years to 1,264,870, 144 among an elderly population of now over 5,481, Importantly, the number of pensioners only includes those who are able to access a public pension, many more are highly vulnerable in the unorganised sectors and to compound matters literacy levels among the elderly are particularly poor. In 2003, two thirds of the aged population [was] illiterate male literacy [was] 49.4 per cent while the female literacy rate [was] per cent. 146 It is also worth noting that accessible pensions only contribute to the financial assistance necessary for care, provisions must be made for the physical and emotional support required through a child s development and in the case of elderly carers they may not be in a position to provide this twenty four hours, seven days a week. The State s Department of Social Welfare has developed a range of schemes that potentially address a number of related OVC issues and if not denied access, through stigma and discrimination, OVC due to HIV and AIDS and their carers can benefit from such provision. The department emphasises it is focused on the welfare of women and children and as such has implemented a plethora of schemes. Those of relevance to OVC include marriage assistance, adoption services, orphanages, supply of free sewing machines, girl child protection programmes, protection for neglected and abandoned children, nutritious meals for children, pensioner schemes and combating commercial sexual exploitation of women and children. 147 Much assistance is provided to poor and disadvantaged families through financial assistance of their daughter s marriages. Specifically, the state runs the Annai Teresa Ninaivu Orphan girls Marriage Assistance Scheme, which provides financial assistance for their future marriage and is a form of support that on paper does not preclude orphans due to AIDS. The Sivagami 143 UNDP, Synopsis of Tamil Nadu HDR, 2003, P Government of Tamil Nadu, (Accessed on 14/08/08) 145 Government of India, Census 2001, UNDP, Synopsis of Tamil Nadu HDR, 2003, P Government of Tamil Nadu, Social Welfare and Nutritious Meal Programme Department, Citizen s Charter, 2007, P. 1 50

58 Ammaiyar Memorial Girl Child Protection Scheme aims to promote family planning, eradicate female infanticide and promote the welfare of girl children through financial incentives for the child s development. 148 Adoption services are provided for abandoned/surrendered babies and for families wishing to adopt. The Sathya Ammaiyar Ninaivu Government Orphanage scheme aims to provide education to orphan and destitute children by providing free food, clothing, shelter and medical care, and a further state welfare initiative has been to provide free sewing machines to destitute or deserted wives with a view to increasing their self employment potential. 149 These schemes all demonstrate the proactive nature of the state in addressing the needs of vulnerable groups closely linked to OVC. For example, if the sewing machine initiative were extended to additional vulnerable groups, such as OVC carers, this could then serve as a means to increase household income (where the main bread winner has died or been incapacitated due to HIV and AIDS) and therefore allow them to continue caring but also work from home. It was strongly felt by local NGOs and networks that a need exists for improved programming that targets care and support at the family and household level but importantly through improving the capacities of households to deal with the affects of OVC due to HIV and AIDS. This is crucial in the area of sustained, comprehensive and targeted economic support to the household, inclusive of training, monitoring, guidance and resources. In providing assistance through building income generation programmes affected households are in a better position to deal with the multiple impacts of the epidemic. In discussions with local organisations significant concerns were raised as to the challenges faced by affected individuals in availing the plethora of social welfare services. A major challenge is simply in people s awareness of programmes and the coordination of these to grassroots level. However, the implementation of District Managers has gone some way to improving and monitoring the quality and performance of policy and programme implementation. This is assisting the district administrations to extend services and improve their coverage. Often practical challenges of providing necessary documentation were sighted as major obstacles. The widow pension scheme was noted as an example where even with the removal of the age criteria from 40+ to include those younger and potentially affected by HIV and AIDS, four registration documents were still required. Most women did not have this number of documents and therefore still faced obstacles to avail this particular service. 150 Why not create specific OVC social welfare programmes for those affected by HIV and AIDS? Ultimately, it becomes hugely problematic to distinguish the needs of some affected OVC groups over others. All have pressing needs as all come from socially deprived areas of society 148 Government of Tamil Nadu, Social Welfare and Nutritious Meal Programme Department, Citizen s Charter, 2007, P Ibid. P PWN+ and World Vision, Field Visit to Tamil Nadu, 16/09/08 17/09/08 51

59 but the favouritism of one group potentially creates stigma and discrimination between those prioritised in service provision. Therefore mainstreaming of HIV and AIDS issues in service provision is the desired response not only to reduce individual stigma and discrimination but also institutional service stigma and discrimination. 52

60 Below is a summary of the relevant social welfare schemes outlined by the Social Welfare Department in its 2007 Citizen s Charter. The title of each and its main objective has been listed for those that in theory are applicable to people affected by OVC due to HIV and AIDS. Summary of State Social Welfare Initiatives 151 Scheme Annai Teresa Ninaivu Orphan girls Marriage Assistance Scheme Sivagami Ammaiyar Memorial Girl Child Protection Scheme Adoption services Sathya Ammaiyar Ninaivu Government Orphanage Sathiyavani Muthu Ammaiyar Ninaivu Free Supply of Sewing Machine Scheme Government Service Home Free Supply of Text Books and Note Books to widow's children Grant-in-aid to the Institutions under the scheme for welfare of children in need of care and protection Puratchi Thalaivar MGR Nutritious Meal Programme Distress Relief Scheme Child Line Objective To help financially the orphan girls for their marriage. Promoting family planning, eradicating female infanticide and promoting the welfare of girl children in poor families and to raise the status of girl children. To provide a family for abandoned/ surrendered babies. To provide education to orphan and destitute children by giving free food, clothing, shelter and medical care. Sewing machines are supplied free of cost with a view to increase the self employment potential for rehabilitation of destitute widows, deserted wives, socially handicapped women and physically handicapped men and women. To provide institutional care to widows who are economically and socially backward, destitute and deserted women and handicapped women by giving them education and vocational training. To supply text books and note books to widow s children studying up to higher secondary course To rehabilitate the destitute children as normal citizens. To provide nutritious meals for the pre-school children in the age group of 2-5 years and for school children (Govt. and Govt. aided) in the age group of 5-15 years and thereby improve the health and nutritional status of the children, besides developing their mental and physical ability. To sanction financial assistance to bereaved families who have lost their breadwinners Rs.10,000/- (Central Government Assistance) CHILDLINE, a telephone out-reach programme committed to responding emergency calls to help a child in distress, in operation in; Chennai, Madurai, Tiruchirapalli, Coimbatore, Salem, Tirunelveli, Kanniyakumari, Cuddalore, Nagappattinam and Kancheepuram (Mahabalipuram). 151 Government of Tamil Nadu, Social Welfare and Nutritious Meal Programme Department, Citizen s Charter, 2007, P

61 Tamil Nadu has also explicitly targeted the range of vulnerable children through its Department of Social Defence which provides services for the development of children found in difficult circumstances and girls and women requiring care, treatment and rehabilitation. 152 This department works with both institutional and non institutional responses, as well as NGO s to ensure the protection of children s rights and their development. The beneficiaries of which include; neglected children, children in conflict with the law, street children, abused children, stranded girls and unmarried mothers, women and girls in moral danger, women and girls committing offences under The Immoral Traffic (Prevention) Act, 1956, and combating trafficking and commercial sexual exploitation of women and children. 153 Specifically, the Social Welfare Board is running 30 short stay homes through NGOs in different parts of the State for girls and women in the age group of 15 to 45 who are in moral danger or abandoned by their families Realising that ensuring the overall protection and development of women and children makes them less vulnerable to trafficking And in turn makes them less vulnerable to the direct and indirect affects of HIV and AIDS. The role of Panchayat Raj Institutions (PRI) has also been highlighted as a key component in anti-trafficking responses, in Tamil Nadu, for example, the setting up [of] Village Defence Committees and empowering them with awareness and [a] mandate to address the issues has been widely appreciated. 155 In addition, the closely related subject of child labour has seen positive trends as a result of the States welfare efforts. Child labour has shown declining trends as the State s efforts in various social sector programmes have borne fruit. Programmes such as mid day meals, incentives for school enrolment, free school uniforms, free bus passes, girl child development schemes and marriage assistance have made it possible for children to avoid entering the labour market. 156 The point has been made that child labour is one of many areas where a child s vulnerability to HIV and AIDS is increased and it is through social welfare schemes, like those pursued by Tamil Nadu that vulnerabilities are being reduced. It is clear from analysing social welfare programmes in the State of Tamil Nadu that no single scheme has been explicitly targeted towards OVC due to HIV and AIDS, nor is this desired if current schemes are fully inclusive and are free from stigma and discrimination. In practice the creation of specific schemes and programmes aimed at HIV and AIDS affected groups is 152 Government of Tamil Nadu, Social Welfare and Nutritious Meal Programme Department, Citizen s Charter, 2007, P Ibid. P UNIFEM, Action Research on Trafficking in Women and Children, July 2004, P Ibid. P UNDP, Synopsis of Tamil Nadu HDR, 2003, P.3 54

62 often stigmatising rather than empowering and therefore detrimental at a stage when discrimination is high. This issue was specifically raised in UNICEF s Barrier Study. In one district of Tamil Nadu a youth coordinator said there had been enough awareness raising to ensure there was no discrimination against affected children. However both the Panchayat chairman and the Anganwadi supervisor in the same district called for separate facilities for affected children a step which is, in itself, clearly discriminatory. It is significant that none of the affected children or their caregivers in that district or anywhere else suggested separation, and fortunate that the Secretary for Social and Family Welfare in Tamil Nadu strongly opposes separate facilities because it endorses stigmatisation. 157 Exclusion from goods and services is often the reality which limits the utilisation of them and will continue to be the case without mainstreaming of these issues in both public and private spheres. An important step therefore in the response to HIV and AIDS is to mainstream across multiple sectors and departments, particularly when targeting support, care and treatment. This is vitally important in the area of OVC and social welfare as the impact is not merely a health concern but one that has significant social and economic implications at the individual, household and community level. 157 UNICEF, The Barrier Study, July 2007, P.31 55

63 5.4 TANSACS PROGRAMMING TANSACS is the primary organisation in the response to HIV and AIDS in the state and from the outset has emphasised that the provision of treatment, care and support for people living with HIV and AIDS is both a medical and emotional concern and with correct care people can live up to ten years or more without developing AIDS 158 The same principle exists in the provision of treatment, care and support for those affected by OVC due to HIV and AIDS, where if adequate and timely interventions are made affected individuals, households and communities can live notably improved and prosperous lives. The work of TANSACS is comprehensive across the State, it has trained a number of Physicians, based at Medical Colleges and District Hospitals in order to manage AIDS patients. It has helped establish special care wards for HIV and AIDS patients across Government Hospitals and has appointed STD Counsellors throughout its STD clinics via the South India AIDS Programme. Furthermore, TANSACS has been closely involved with grassroots NGO s who are active in the provision of crucial care and support at this level, an example of which was seen in the Continuum of Care Project set up in collaboration with the Madras Christian Council of Social Service (Chennai) and the Community Health Education Society (CHES Chennai). TANSACS has also worked with the latter to provide moral and emotional support to people living with HIV and AIDS through the Hope Club based in Chennai and is also exploring 'home care' options for PLHA. (See below) The concept of home care support is something touched on in this paper and is a key programme area for individuals, families and households affected by OVC due to HIV and AIDS. The CHES experience found that family counselling helps HIV positive persons to live at home, with the support of their families 159 Such an approach is also beneficial to OVC carers and affected households as the financial, emotional and social burdens are just as great in these circumstances. The Happy Home: CHES Supports Orphans with AIDS and infected Women 160 When Dr. Manorama decided to open her home to two HIV-infected orphans, she set in motion a series of events that would establish CHES as a care-giver for HIV and AIDS infected persons. The Community Health Education Society (CHES) is a Chennai based NGO that offers refuge and solace to HIV and AIDS patients in general and infected women in particular. The Ashram was CHES's initial project and was started as a home for AIDS orphans. Over the years, the Ashram also became a place of refuge for CSWs. Many have left the sex trade and work as care-givers at CHES. Caring for HIV and AIDS patients involves an approach that must minister to their physical, mental, emotional and spiritual needs. In 1997, CHES began its home-based care programme, named Vidiyal (dawn), the project also runs the Hope Club with support from TANSACS. 158 TANSACS, (Accessed on 04/08/08) 159 Ibid. 160 Ibid. 56

64 TANSACS has also demonstrated its initiative and leadership with the recent creation of an OVC Coordinator position to deal with the specific issues of OVC due to HIV and AIDS. Alongside this a significant State response has emerged through the development of a State Child Trust Scheme. The Trust is a positive initiative incorporating a range of child protection schemes and will provide economic support to infected and affected children through the family and household. It is a practical example of how issues are being mainstreamed and focused towards OVC by combining the qualities of the relevant departments (Women and Child Development, Social Welfare and Legal Protection). This process will define each department s areas of responsibility and direct policy implementation under NACP III. 161 Potentially the trust will act as a model on how to respond to some of the issues faced by OVC and those affected. Anyone eligible can apply and sustained support will be provided through an immediate response. This will also provide a mechanism for systematic monitoring of OVC and will also compliment the expansion of ART, addressing the economic need required due to the deeper affects of HIV and AIDS. The main objective is to prevent institutionalisation of children and although the focus is on OVC due to HIV and AIDS as a particularly vulnerable group, guidelines can be extended in the future to additional OVC groups. 162 The success of this scheme will be watched with much interest by other States and serve as a useful provision to OVC affected households if resources are effectively distributed to where it is needed at grassroots. 161 TANSACS, Field Visit to Tamil Nadu, 15/09/ UNICEF, Field Visit to Tamil Nadu, 16/09/08 57

65 5.5 NATIONAL PROGRAMME RESPONSE A primary national response and linked to the Department of Women and Child Development is the Integrated Child Development Scheme. The ICDS is an integrated package of services focused on child development and aims to specifically improve the nutritional and health status of vulnerable groups. In theory this scheme has the capacity to direct resources and filter programming down to the district level for the most vulnerable groups, however, in practice this has been questioned. Like many of the services and provisions available this is a generalised programme and is largely centred on child development up to the age of six years, in addition to support for pregnant women and nursing mothers from families below the poverty line. 163 It is therefore limited in its provision for OVC due to HIV and AIDS. Furthermore, the experience of PWN+ is that ICDS is not yet fully felt on the ground and concerns exist over the practical implementation of the scheme due to national level government systems. It was the view of some networks and NGOs that the use of such services to mainstream the likes of HIV and AIDS is therefore nice in principle but in practice doesn t always work. This is largely as a result of poor coordination and lack of access to information between and from government sources. Mainstreaming can be considered a long term aspiration but in the meantime other mechanisms are required. Specifically, there is a lack of monitoring of policy implementation on the ground and mechanisms are again required to ensure policy papers translate into constructive results. 164 Response under NACP III The overall direction and strategy of the HIV and AIDS response can be seen within the National Aids Control Programme, currently in its third stage of implementation. NACP III objectives and targets have been admirable but questions can be asked as to whether they are broad enough in their reach of household and community impacts. The successful implementation of these goals and targets is also an area for debate. NACP I and II failed to make any specific programme reference to OVC due to HIV and AIDS 165 and under NACP III there is limited recognition of these specific groups but improved programming towards child and adolescents in general. Specifically, NACO does not have the capacity to implement the wide ranging programmes required to address the broader and deeper impact of OVC due to HIV and AIDS. 166 Understandably, its focus and scope is restricted to treatment, care and support at the individual level. This in turn has left NGO s to fill programming gaps, examples of which can 163 PWN+ and UNIFEM, Tamil Nadu Government Welfare Schemes Resource Directory, 2006, P PWN+, Field Visit to Tamil Nadu, 15/09/ USAID India, Rapid Assessment of Children Affected and Vulnerable to HIV and AIDS, Tamil Nadu, March 2006, P UNICEF Delhi, OVC Research Meeting, 03/09/08 58

66 be found through OVC programmes implemented by HIV/AIDS Alliance and FHI (Family Health International), the former with Global Fund support. 167 However, NACO has felt the need to address OVC issues despite being outside of its mandate in NACP III and is looking at a number of programme areas (undefined) to address OVC due to HIV and AIDS. The likely response is a decentralised approach through regional SACS, although these too are significantly limited as a result of guidance by NACP strategy. Scope does exist for SACS to undertake their own initiatives and a prime example is TANSACS, having established the Child Trust. On the following pages are the global and national goals/programme targets with reference to children and adolescents impacted by HIV and AIDS under the current NACP III strategy. National Programme Response under NACP III 168 Goal/Target Global goal NACP III goals Programme Targets Primary prevention among adolescents. By 2010, reduce percentage of young people living with HIV by 25 percent globally. The overall outcomes envisaged under NACP III for young people are reduction of risk behaviour, especially among young people, and reduction in rate of HIV infection among young people. 152,000 secondary and senior secondary schools having at least two trained teachers as a resource for implementing the Adolescent Education Programme. 25 million students to be reached through the Adolescent Education Programme. 70 million young people not in the school system including vulnerable youth, street children, children of CSW, children in institutions and child labourers will be reached by HIV prevention skills education programmes and related services. 100 percent coverage of all high-risk groups including CSW, IDU and MSM. 167 UNICEF India, OVC due to HIV and AIDS research discussion, Wednesday, September 03, NACO, Policy Framework for Children and AIDS India, July 2007, P

67 Prevention of parent to child transmission (PPTCT). By 2010 offer appropriate services to 80 percent of women in need. To scale up PPTCT services through public/private partnerships, extend the services up to the level of CHC as part of the ICT centres to be established to prevent vertical transmission of HIV in an annual cohort of 70,000 HIV positive pregnant women throughout the country. 7.5 million pregnant women covered through PPTCT counselling and testing services; 5,600 HIV infected mother baby pairs to receive prophylaxis ART. Paediatric AIDS treatment. By 2010, provide either antiretroviral treatment or cotrimoxazole, or both, to 80 percent of children in need. All children eligible for treatment have access to treatment. 40,000 children receiving ART. Protection and care of children affected by HIV and AIDS. By 2010, reach 80 percent of children most in need To achieve highest quality of life for HIV affected children and their families and ensuring that they are not excluded from or treated differently within public services which are available to all children in their communities. ICDS Goals All children (including children affected by HIV and AIDS) have access to basic services (health, education, nutrition and treatment for AIDS); Upholding the rights of children in difficult circumstances; Securing for all children (including children affected by HIV and AIDS) all legal and social protection measures to prevent and redress all forms of abuse, neglect and exploitation. Number of children (including children affected by HIV and AIDS) linked to child welfare scheme; In the short term, to reach out to the maximum number of infected children and provide them with treatment and care and support services. In the long term, to achieve the highest quality of life for all children, including those who are HIV infected or otherwise affected, through a comprehensive set of basic health and education and social protection services. The capacity to go beyond this mandate may not exist, however, with specific reference to OVC due to HIV and AIDS responsibility and strategy must be coordinated effectively. Where the state response through public goods and services is inadequate no alternative exists for addressing, quite specific, OVC due to HIV and AIDS issues. Although responsibility for the 60

68 adequate provision of public goods and services should remain with state or private institutions, innovation, leadership and partnership can come from NACO, SACS and NACP strategy. The broader scope and deeper impact of this subject must be addressed and by integrating these issues in health, education and social welfare services, led by NACP, will raise their standing and effectively tackle public service stigma and discrimination. Mainstreaming potentially helps tailor public health, education and social welfare policy to be inclusive of OVC due to HIV and AIDS without creating exclusive policies and programmes that potentially create further discrimination. In discussions with local organisations the need for greater strategic leadership to address OVC due to HIV and AIDS was clear but opinions differed as to where this leadership should come from. It was highlighted that OVC is not just an issue for NACO, it encompasses issues of health, education and social welfare and therefore the main leadership of such issues is driven through the Department for Women and Child Development. OVC due to HIV and AIDS in many ways is dealt with under NACP III in its broader policy and programme areas and not necessarily through OVC focused interventions. However, NACO has the potential to provide enhanced leadership in terms of social engagement and advocacy through the media in the least. HIV and AIDS have such specific implications and combined with operating in extremely conservative environments its response requires particular innovation in distributing a national message and navigating social norms. Furthermore, NGOs and Networks felt that NACO and SACS weren t always the best placed institutions to reach grassroots and more often than not it is the capacity of local NGOs to reach out to affected people that enables them to provide certain services. They also felt that NACP III, on the whole had failed to capture the needs of children. As a result and significantly there is no budget under current NACP strategy to address specific programmes and projects for OVC. State departments can and should take responsibility for the wider programme implementation of social welfare issues but it was questioned as to whether the mechanisms are in place at a localised level to improve and provide the necessary coordination between departments, programmes and grass root beneficiaries. Although NACP III strategy does recognise the individual child, particularly in reaching targets associated with health treatment and support, it was argued this was too much the focus and detrimental to other OVC concerns. Consequently, the broader and deeper impacts have been lost under national HIV and AIDS planning and therefore scope exists for NACO to lead the specific response to OVC due to HIV and AIDS. 61

69 Are NGOs filling a service gap? It was apparent from visiting Tamil Nadu that NGOs and partner organisations are helping to fill the goods/service gap; however, official government programming is guided by the Three Ones principles. Programmes supported by government and implemented with the help of NGOs saw each have areas of responsibility, each complimenting one another and sharing programming inputs. In Tamil Nadu this has been demonstrated through key partnerships between GATES Foundation, USAID, and TANSACS. Significantly, INGOs and LNGOs have the benefit of being innovative and creative; however, the capacity to scale up programming only lies with state institutions. Cooperation therefore between these two entities is a potential win/win scenario, nice in theory but again something that does not always work in practice. Networks and NGOs are also in a prime position to supply a high degree of monitoring and pressure over service provision, although they may not have the capacities to carry out such a role on a formal basis. However, potentially this can enhance broader community based monitoring systems with networks acting as the informal watchdogs of adequate service provision for OVC due to HIV and AIDS. SAARC Framework It is important to identify a strategic response to OVC due to HIV and AIDS in order to know how best to approach the difficulties and challenges faced by vulnerable groups. This has been comprehensively analysed in a collaborative work of over twenty International and Non- Governmental Organisations, titled The Framework for the Protection, Care and Support of Orphans and Vulnerable Children Living in a World with HIV and AIDS. Resulting from this five key strategies have been noted that crystallise the strategic response required across India. Key Strategies Strengthen the capacity of families to protect and care for orphans and vulnerable children by prolonging the lives of parents and providing economic, psychosocial and other support. 2. Mobilise and support community based responses. 3. Ensure access for orphans and vulnerable children to essential services, including education, health care, birth registration and others. 4. Ensure that governments protect the most vulnerable children through improved policy and legislation and by channelling resources to families and communities. 5. Raise awareness at all levels through advocacy and social mobilisation to create a supportive environment for children and families affected by HIV and AIDS. 169 UNAIDS and UNICEF, The Framework for the Protection, Care and Support of Orphans and Vulnerable Children Living in a World with HIV and AIDS, July 2004, P.14 62

70 It is within these five broad guiding strategies that the care and support of OVC is best served through strengthening family and community-level responses for all vulnerable children. It is important to encourage governments and civil society organisations to put social protection programmes at the centre of policy and programming to ensure the most vulnerable families are able to meet their basic needs. In addition it is vitally important to invest in family support services and engage and partner with communities in planning and monitoring social and family support services. In doing this it not only supports the premise that parents are children s first line of protection, but also increases the capacity of families and households to cope with the burden of OVC if household members are lost to HIV and AIDS. Such family and community led strategies are required within public goods and services so as to address the broader and deeper needs of those affected through OVC due to HIV and AIDS. 63

71 6.0- CONCLUSION India s children are often overlooked in the response to HIV and AIDS especially when the focus is firmly on the sexually active population. This emphasis excludes two significant groups, namely, children and the elderly. The upper age range of children and lower range of elderly can also be sexually active and these groups are greatly affected by HIV and AIDS if not directly then indirectly. The emphasis on the HIV and AIDS response has traditionally been focused at the individual impact level, a necessary approach, but as this paper has explored the impact is far greater. The emotional, social and economic burdens experienced at the family and household levels are significant, particularly in relation to OVC due to HIV and AIDS. This research has attempted to broaden the awareness around OVC and highlight its wider household and community impact. It has brought together the little known figures of OVC and has also aimed to show the required understanding of the social, economic and welfare aspects of the subject. Consequently, this enables adequate and timely provisions to be made, that addresses OVC issues, and recognises that this particular challenge of HIV and AIDS is complicated by its prolonged wave length. There is a need to institutionalise the response to OVC due to HIV and AIDS, without institutionalising the children themselves. If regional and local schemes have a positive impact then these should be extended across the state. Home care and social welfare schemes outlined in this paper serve as progressive examples of tackling social challenges, however, it must be ensured these do not exclude those affected due to stigma or discrimination. Responses targeted through the improved quality and expansion of primary public goods and services, particularly in education, health and social welfare are better placed to assist the most vulnerable. There remains a need to mainstream and integrate HIV and AIDS responses in these goods and services, again to avoid stigma and discrimination and the provision and access to them made equitable for orphans, vulnerable children, parents/guardians and care givers. This is an area where Tamil Nadu has set a positive example, particularly in terms of awareness and sensitisation programmes at the service level. Furthermore, an overall OVC response must recognise the required treatment, care and support for carers, families and households who deal with all consequential burdens. Tamil Nadu acts as a good example to other states that regardless of restricted per capita income; health, education and social development indicators can be drastically improved. This is driven by sustained political commitment and effectively targeted investment that reaches the most needy and vulnerable. In so doing socio economic and welfare issues associated with OVC can be averted. Tamil Nadu is a success story in terms of its efforts and response to HIV and AIDS. In order to maintain this status gained through successful prevention measures it is 64

72 important the state comprehensively acknowledges and addresses OVC issues. This must reflect the high historical prevalence of the state irrespective of progress in halting and reversing the epidemic today and in the future. However, it would appear the State is in a better position than most to absorb the future impact of OVC as a result of gains in overall human development and its concerted efforts in the response to HIV and AIDS. Through sustained focus and without succumbing to complacency, Tamil Nadu has the potential to lead the response to OVC due to HIV and AIDS and act as a template to others. The effective and full implementation of the Child Trust will be a crucial mechanism on which the states OVC response can be measured. This paper has looked at OVC due to HIV and AIDS through aspects of poverty and vulnerability and considered the responses to them through provision of goods and services, as a result the paper concludes; There is a need to tailor programme implementation to address the broader (individual, household, family, community) impact of OVC, due to HIV and AIDS. Programme implementation must also address the deeper (social and economic) impact of OVC, due to HIV and AIDS. Stigma and discrimination remain major obstacles to affected OVC, specifically, in accessing health, education and social welfare services and significantly, this also extends to those affected household members. Consequently, the means of addressing these challenges is best served through building the capacities and mainstreaming OVC, due to HIV and AIDS in public goods/services of health, education and social welfare. Any programme response should be in line with the five main principles of the SAARC Framework and ultimately ensure that resources and support are targeted through the family and community levels. This paper has also identified that greater national advocacy and leadership in the area of OVC, due to HIV and AIDS is required and NACO has the potential to fill this gap in close collaboration with state institutions. Without such national leadership programming is lost or merged into mainstream projects, therefore awareness, sensitisation and resources do not find there way to those that need it most. Individuals, households and communities affected by the burdens and suffering as a result of limited responses deserve a more productive life beyond that of mere survival. This is something that can be realised in 65

73 the long term with the provision of adequate and equitable education, health, and social welfare services that recognise and account for the issues discussed in this paper. As a final note, and not to overlook the importance of the issues discussed here, the United Nations General Assembly itself, only recently recognised the global relevance and need for greater emphasis on the provision of care, treatment and support for OVC, as well as those affected individuals, households and communities it afflicts. These specific issues were raised during a recent United Nations high-level meeting on HIV and AIDS in June Participants noted with concern the low coverage of services to support orphans and other children affected by the epidemic. According to surveys in 11 high-prevalence countries, only about 15 per cent of orphans in 2007 lived in households receiving some form of assistance. It was noted that social protection helps to mitigate the social and economic impacts of the epidemic on households and communities. 170 It is therefore apparent that India is not alone in the response to this particular aspect of HIV and AIDS and demonstrates the low degree of assistance provided around the world for such cases. It is positive to see that such an issue is recognised at the highest levels of the United Nations and poses the challenge of how best these inadequacies of service provision will be addressed nationally, regionally and locally. As noted social protection helps to mitigate the socio-economic impact of OVC issues, but more broadly the raising of standards in public goods and service provision, highlighted throughout this paper, enables the most vulnerable to access treatment and care and better protect them from the epidemic. 170 United Nations General Assembly, Summary of the 2008 high-level meeting on the comprehensive review of the progress achieved in realizing the Declaration of Commitment on HIV and AIDS..., June 2008, P.6 66

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77 Appendix Section Tamil Nadu - Terrain Map 1 1 Maps of India,

78 Section Tamil Nadu - District Map 2 2 Maps of India,