There are no laws for the protection of children who are orphaned by HIV/AIDS or who may have contracted the virus themselves. Without family and social support, they are at risk of being sexually abused or trafficked into prostitution, says Mariette Correa

In April 2008, Union Minister for Health and Family Welfare Dr Anbumani Ramadoss admitted in the Lok Sabha that India lacked a defined strategy to take care of children who have been affected by AIDS as there was no data on HIV-affected children, particularly orphans and vulnerable children. However, he accepted that “these children are in as much need of government intervention as are the HIV-infected lot”. (1)

The lack of data is no reason to ignore the serious effect that HIV/AIDS has on the lives of children infected and/or affected by AIDS. There are several laws that make the government responsible for children in need of care and protection, but there is no provision for children affected by AIDS.

Impacting the family

HIV/AIDS has a devastating effect on families. For children whose parents are living with HIV, life is likely to be a series of hardships. As the disease progresses, the parents fall ill repeatedly and this leads eventually to loss of jobs. The children are often forced to leave school, start earning a living and take care of their parents and younger siblings. The low household income and increasing medical expenses strain the family’s resources. Many children have to not only see their parents die, but they also have to live with the stigma of being associated with someone who had AIDS.

In India, the extended family system is still strong. Children are usually taken care of by their aunts, uncles or grandparents if their parents die suddenly. But if the death is due to AIDS, the extended family is much less helpful, either because of misplaced fears of becoming infected themselves, or because of the stigma of being associated with someone who is HIV-positive. The children, who already have to deal with the loss of their parents, are left to fend for themselves in a hostile world where they are unwanted.

There is not much information about child-headed households in India as there is in parts of Africa, but anecdotal evidence suggests that these households do exist in the southern states which are more affected by the epidemic. Many orphans are placed in institutions; those who are not in institutions are likely to be heading households.

Due to the discrimination they face, caregivers of children affected by AIDS also need support, both financial and emotional. Relatives who accept affected children may find it difficult to manage on their meagre income and human resources. The affected children themselves need additional emotional support, as anyone would who has undergone a traumatic experience. But they rarely get it, so even when extended families take in orphaned children, the quality of care they give is questionable.

When the children are HIV-positive, parents or guardians tend not to tell them about their condition.  The children don’t understand why they fall sick more often than their friends, or why there is an air of gloom and discomfort in the home whenever they are sick. Those who are on anti-retroviral therapy (ART) are confused about the daily medications they have to take, and why they should not discuss this with their friends.

Apart from lacking the skills to take care of an orphaned child’s special needs, guardians may have children of their own and the orphaned child takes second place when it comes to food, clothes and schooling. When orphaned children are HIV-negative, there are greater chances of relatives and community members helping with food, shelter and clothing. Further, many children raised by grandparents face a second loss when their much older grandparents die.

Girls affected by HIV/AIDS are far more vulnerable than boys. In a patriarchal society like India’s, girls are seen as commodities. Without family and social support they are at risk of being sexually abused or trafficked into prostitution. Parents with HIV may get their daughters married off at an early age so that there is someone to look after them when the parents die. Relatives are reluctant to take care of girls due to the additional responsibilities it imposes—ensuring their safety, getting them married, etc.

Orphaned children are vulnerable to exploitation and this significantly increases the likelihood of their contracting HIV themselves. Since girls are less likely to be accepted into adoptive homes, most of the children who are abandoned are girls. They are more likely to be abused and exploited if they are also found to be HIV-positive.

Institutional support

Admitting children infected or affected by HIV/AIDS into an institution may seem a viable, though not ideal, option. Unfortunately, institutionalisation has become a de facto option for orphans and children affected by AIDS. However, institutionalisation should be a last resort, to be used only when family and community support options have been exhausted. Both, the negative effects of institutionalisation and the alternatives to it have been well documented. (2) While the government provides financial support to institutions caring for orphans and destitute children, there is no such financial provision made to families and communities who could look after these children within the community itself.

Though institutionalisation may be an option, there are very few institutions for orphans and destitute children and many of these do not admit children who are infected with HIV. Institutions have been known to turn away children because of their own or their parents’ HIV status. While most orphanages take in HIV-negative children whose parents have died of AIDS, they do not admit HIV-positive children saying that they cannot give the children the separate treatment that they deserve, or that other children may be at risk. Some argue that the child will not find an adoptive home if HIV-positive. It is true that most adoptive parents want healthy babies and specifically ask for the HIV test to be done before adopting a child. Only recently, Andhra Pradesh showed a drop in adoptions as many abandoned children were found to be infected with HIV (3).

Provisions for healthcare and education

Children with HIV or whose parents are known to have HIV or AIDS have fewer chances of getting an education and access to health care. There are many cases across the country of children being turned away from schools and health services because they or their family members are HIV-positive. Children are either denied admission into schools or thrown out once it is known that one parent is infected with the virus. The case of Bency and Benson, two HIV-positive orphans in Kerala was much publicised because the school denied them an education but their story is not unusual.

Many parents do not inform the school about their HIV status fearing that their children will be stigmatised, as happened in the case of Manjula. “When my husband died, everyone in the locality got to know that he had AIDS. My daughter was asked to sit separately in class. Nobody said anything to her about AIDS, but first the teachers and then the students, her own friends, hardly spoke to her. She’s only 10 and was very attached to her father. She would hate going to school and wouldn’t step out of the house once she came home. I finally shifted her to a new school. Though it’s much further from our house and the travelling is expensive, at least she is all right there. Nobody knows about her father and she is slowly making new friends.”

Especially vulnerable children

Children living on the streets, sex workers and child labourers are at greater risk of getting HIV, while children infected or affected with HIV are more likely than others to be forced onto the streets, into child labour or into sex work. Street children, sex workers, and other marginalised groups face additional forms of discrimination if they or members of their family are affected by HIV/AIDS. They are less able to get health, education and HIV-related services. Due to their socio-economic status and the morals of mainstream society, they are disproportionately affected by the disease. Children are often forced into different forms of labour or sex work to support their families once the virus has entered their households.

Street children

It is estimated that there are 18 million street children in India, the highest number in the world (4). If HIV continues to take its toll on the population, this number is likely to increase. For a host of reasons, street children are additionally vulnerable to HIV infection. Many of them are injecting drug users, they are exposed to sexual abuse and they have very little access to safe healthcare. They face discrimination in public hospitals, and are more often than not left to fend for themselves to get the care they need. As most of them are illiterate, they are unable to fill the requisite forms to avail of services. Without an adult accompanying them, they have very little hope of getting access to health services. They are dependent on private and expensive healthcare providers.

Child sex workers

A parent’s death may force a young girl (and sometimes boy) into prostitution for lack of other options to earn a livelihood. Trafficking networks are on the lookout for vulnerable girls to lure into the trade. Minors in prostitution are a hidden population and estimates of their numbers are difficult to come by. Still, it is clear that a vast majority of women in sex work were trafficked when they were children.

It is also more likely that children of sex workers who die due to AIDS, are pushed into prostitution to repay debts or because it is the only world they know. Merely being the child of a sex worker means facing stigma and discrimination from mainstream society. Children of sex workers who are orphaned, or whose mothers are unable to care for them, face added forms of discrimination be it in education, health or shelter.

Working children

India has the most number of child labourers of any country - an estimated 17 million. The AIDS epidemic will only swell these figures as children of parents who have AIDS are often forced to work and support the household. Their parents fall ill repeatedly and in the end stages of the disease are unable to work. Medical expenses also increase in households affected by AIDS.

Nearly 50% of female child labour in urban areas is engaged in household responsibilities and sibling care, or domestic child labour. Despite laws prohibiting child labour, the weak enforcement and implementation machinery makes the problem rampant. Working children may be more vulnerable to HIV transmission, especially if they are engaged in work that puts them at risk, as for example rag pickers who collect medical waste near health facilities.

What children want

On one of the rare occasions when the voices of children infected and affected by HIV were heard, (5) their main concerns were “a sense of isolation from the community, stigma and discrimination in school and lack of good, nutritious food and child-friendly medical services in hospitals.” Given their poor access to healthcare, it seems improbable that anti-retroviral therapy will reach vulnerable and marginalised children.

Despite the bleak scenario overall, there is a lot of work being done by the government, NGOs, community and faith-based organisations and positive networks in providing care and support to children infected and affected by HIV and AIDS as well as prevention interventions with vulnerable groups.

There are also well-informed and sensitive people in the community who go out of their way to help these children. These interventions and good practices need to be highlighted by the media as models to be followed in order to bring about changes that will minimise the adverse impact of HIV and AIDS on children.

(Mariette Correa is an independent consultant who has been involved in HIV/AIDS programming for NGOs in Goa and South Asia)

Endnotes

1. http://www.thestatesman.net, April 20, 2008
2. ‘Future forsaken: abuses against children affected by HIV/AIDS in India’, Report by Human Rights Watch, 2004 http://hrw.org/reports/2004/india0704/
3. ‘Scourge of HIV/Aids hits adoptions’, The Times of India, Hyderabad, October 13, 2008 http://timesofindia.indiatimes.com/Hyderabad/
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4. ‘A child of India’s streets’, International Herald Tribune, January 26, 2006
5. Nitin Jugran Bahuguna, ‘Anguished young voices: sixty children affected by HIV from all over India get together to express their views and demands’, Women’s Feature Service. http://www.worldproutassembly.org/archives/2006/07/anguished_young.html

InfoChange News & Features, November 2008