Children with AIDS battle social stigma

An attempt to rehabilitate children with extended families after their parents’ death is being done by CCDT, which has four shelter homes housing 134 HIV children in Mumbai.

Written by Tabassum Barnagarwala | Mumbai | Published:September 12, 2016 2:25 am

On August 22, two sisters aged nine and eight were brought to the Goregaon-based Desire Society, a shelter home for children affected by Human Immunodeficiency Virus (HIV). Their mother died of AIDS last year and father, also suffering from the disease, is a handcart puller living off the footpaths in Vasai. “The father could no longer take care of them. Relatives were not willing to take custody,” said social worker Supriya Ahire.

The sisters are now trying to adjust to a new home, away from their father. A month ago, a boy aged 10 was left under similar circumstances at the shelter home. His ailing parents, both AIDS patients, live outside a church in Virar. No relative was ready to house him. “All the three children tested HIV negative. But social stigma attached with the disease makes even relatives shy away,” Ahire said.

With 31 children now — 25 girls and six boys — the centre is struggling to provide space to growing number of AIDS-affected orphans abandoned by close relatives.

The city’s three NGOs, attached with the Mumbai District AIDS Control Society (MDACS) for rehabilitating AIDS-affected children, are facing similar problems. At St Catherine Home in Andheri West, there are 51 girls suffering from HIV. “We have a system for visit by their extended families once every month. These children are seldom visited by anyone. During summer vacations, even if a kid is taken home, they are ill-treated,” said Sister Shanti, adding that separate bedding and separate food are the most common instances of ostracisation.

Of the 51 girls at the home, 45 are orphans of which 35 have relatives unwilling to live together.

The city has 1,997 HIV-positive children registered with MDACS of whom 1,481 require anti-retroviral treatment to fight the virus. The three NGOs — Desire, Committed Communities Development Trust (CCDT) and St Catherine Home — together support 216 orphan children. “We keep holding awareness campaigns in slums that AIDS does not spread by touch. But for orphans, who have already lost both parents to the disease, the inability to get admission in school and abandonment by relatives still needs to be addressed,” said Dr Shrikala Acharya, additional project director at MDACS.

An attempt to rehabilitate children with extended families after their parents’ death is being done by CCDT, which has four shelter homes housing 134 HIV children in Mumbai. Since 1995 when the NGO started, of 7,600 AIDS-affected children brought to them, 7,047 could be rehabilitated back into the society in homes of close relatives by rigorous counselling.

“The process can take 12 to 18 months. Our field counsellors keep going to the home of the child to provide nutritional, medical and educational support. Slowly they explain everything about the disease to the relatives and how it can be handled easily. What we need is patience to convince these families that a child with HIV is not a burden,” said Poonam Palkar, project director.

According to CCDT founder Sara D’Mello, a team of 67 field counsellors are attached with the NGO. “Only in cases where financial condition is poor or when relatives are abusive or ill-treating the child, counsellors decide to place the child under our care.”

At their Bandra-based home with 40 children aged under 12, there is a two-year-old new entrant. She was brought two days ago by another NGO in Navi Mumbai. As she smiles shyly among a group of older children, Chhaya Rade, who manages institutional care, explains, “For a child to be separated from his home and put in a new environment is difficult. They take days before getting familiar.”

“What we need are efforts by social workers to counsel relatives to accept an HIV-positive child. Only then will the stigma go,” said Acharya, from MDACS.