Policy makers and care-givers woke up late to the impact of HIV on children orphaned by the disease. While many support programmes have been initiated, a lot still needs to be done.
Apart from linking them up with healthcare services, an effort is being made to re-admit children into government-run boarding schools or vocational training schemes …
It is estimated that approximately 15 million children have been orphaned by HIV-AIDS worldwide. Another startling figure is that everyday, about 1,800 new HIV infections in children under 15 are added to this figure, mostly by mother to child transm ission.
Undoubtedly, the impact of AIDS on children begins long before they become orphans. Prashant, who is all of 11 and living in Metpally in Karimnagar, tells you in a matter-of-fact manner, but tinged with helplessness, how he nearly stopped going to school. “There was no money in the house. I was prepared to walk four km everyday to go to school. There are no buses that come to our village. On some days I would get lucky because my best friend Satish would give me a ride on his scooter, when his sister was not there. I want to study well and become a teacher, but my grandmother and aunt found it difficult to educate me and instead wanted to send me to work.” Such stories abound in different parts of Andhra Pradesh and Karnataka.
In many instances, much of the trauma they experienced in the years when their parents were in the terminal stage appears less daunting than the challenges and utter devastation they experience after their parent’s death. In Gundlavalli Village, in Karimnagar, Lakshmi, 17, is now taking care of her two siblings, Rajitha, 15, and Malleshwari,11, after her parents died of AIDS. In contrast to her present woes, the past looks far more blissful. “Before my mother passed away, I and my sisters used to go to school. We did not face any hardship. Mother used to make bidis and sell bangles. We did not suffer in any way. When I used to ask her to show me how bidis are made, she would scold me and ask me to study well and not waste my time. Today I am rolling those very bidis as a source of livelihood. I make Rs. 500 a month and another Rs. 200 as a daily wage labourer. Out of this, I am paying Rs. 300 to repay a loan my mother had taken.”
The response to HIV’s impact on children began five years ago. According to Dr. Damodar Bachani, the Deputy Director-General, NACO, the national estimate that 70,000 children are living with HIV has been arrived at because of the decisive steps the government took to prevent vertical transmission from mother to child by offering voluntary testing to all pregnant women who come to antenatal clinics.
However, when it came to the larger issue of vulnerable and affected children, most organisations that began working on this issue in States like Karnataka and Andhra Pradesh had absolutely no idea about the magnitude of the problem. “We began by identifying and developing a database on children orphaned and affected by AIDS, across 12 districts of Karnataka. In Bagalkot district alone we found 1,800 children in need of different levels care and support,” states Dr. L. Troy Cunnigham, a specialist working in the field of care and support on orphans and vulnerable children and part of a consortium of organisations, led by University of Manitoba and Karnataka Health Promotion Trust to implement an integrated HIV prevention, care and support and treatment project for children affected by HIV. They found that most children were highly malnourished, a vast majority had very poor quality of shelter, care and support and most importantly, completely bereft of any kind of psychosocial support and were silently coping with the trauma of having witnessed their parents’ plight during the terminal stages of the illness.
Realising the urgency of the issue, Prashant and Lakshmi represent the small group of children who are now being reached out to in different parts of the country.
An international NGO, Alliance India, has got a grant from the Global Fund to reach out to 65,000 families in select districts of Andhra Pradesh, Tamil Nadu, Maharashtra and Karnataka with a package of services. Apart from linking them up with healthcare services, an effort is being made to re-admit children like Prashant into government-run boarding schools or link them up with vocational training schemes and many social welfare and anti-poverty schemes, including access to free ration. In other districts of these high prevalence States, there are institutions like the Clinton Foundation and the Children Investment Fund Foundation of Denmark providing similar kind of assistance
Similarly, in Bagalkot, the community, under the leadership of the Taluk Village Health Committee of Jamkhandi Taluk, has responded in a meaningful manner. Representing 32 Village Health Committees, this federation decided to address this issue in a concerted manner. Supported by the NGO Ujwala, and the lead agency, the Karnataka Health Promotion Trust, they conducted a survey of the children in need of community care and support. Of the 250 children in need of support, they found that 50, having lost both parents and with many having no extended family to take care of them, were in extreme distress. The Village Health Committee responded and initiated a residential school, admitted 31 of the children most in need into the school and decided to take care of all their needs, from food, clothing and shelter to healthcare and education.
Speaking about this effort, Shantha Poojary, a Village Health Committee member, stated that once the Deputy Commissioner and Revenue Department sanctioned them a building free of cost, they had a lot of work to do as it was an unused and run-down property. “We had to clear the entire ground — it was full of wild thorny plants and weeds — and clean the premises, raise funds from the community to do some minimum renovation, repairs and get the school going. Women VHC members alone contributed Rs. 6,500 to this effort. In the process, we all got so attached to this school that we decided to name it as Namma Makala Dhama, or Our Children’s Residential School,” she explained.
Despite all the efforts that are being made, one major challenge that is emerging for organisations involved in mounting a qualitative response to the problem is the reluctance of donors to provide long-term funding to such initiatives. Exasperated by the short-term and piecemeal funding support that the Care Home in Delhi, managed by the Naz Foundation, India for nearly 40 children orphaned by HIV, is currently receiving, Anjali Gopalan makes it clear that she is sick of the double standards adopted on this issue. She states that in the name of affordable and sustainable low cost care, the models of care and support that are being encouraged all over the country is to ensure some minimum needs and protection for the child. “Today they are over-emphasising the cost factor and experimenting with just about anything that provides some modicum of support to the children. I am sure they will shudder at the thought of applying the same standards of care and support to their own children.”