Institutional Home – A Solution to Uganda’s Orphan Crisis?
- Yushuang Sun
- Apr 24, 2018
- 4 min read
1.5 million people in Uganda are living with HIV. 190,000 of them are children between ages of 0-14. Only 35,500 receive AIDS treatment.
These statistics became personal when we visited the Mana Rescue Home in Fort Portal – Western Uganda. Fort Portal is in a region with one of the highest rates of people living with HIV/AIDS (PLHIV) in the country. Mana opened its doors in 2004. To this day, it continues to provide proper nutrition, medication, counseling, schooling, and a loving home to orphans and vulnerable children (OVC). Currently, the rescue home takes care of 30 children between the ages of 5-17 and all born with HIV.
Mary, one of the nurses at the rescue home, warmly welcomed us, proudly took us around the compound and explained her daily activities. The first thing she introduced us to was the medication shelf. They divided the shelf into small blocks where children are trained to grab their daily antiretroviral pills (ARVs) from their assigned block. However, for younger children on HIV treatment, daily ARVs are too much of a bitter and hard pill to swallow, and many do not understand why they need them. Mary told us of instances when kids pretended to take the pill in front the nurse but later spat it out. In fact, not knowing why they need to keep taking drugs is a big reason for high non-adherence rates to HIV/AIDS treatment among adolescents in the country. Parents or caregivers often mediate medicines for their children and seldom teach them how to treat the virus or the fatal consequences of not taking their medicine. Hence, the rescue home informs the children of their HIV status at an early age and ensures that they understand the importance of HIV treatment so that they are more likely to continue taking medications after leaving.
The rescue home also employs two residential teachers for children who have experienced difficulty in keeping up with their peers at local schools. When we toured the classroom, one thing that particularly struck me was the poster on the wall regarding children’s rights. On the poster, children’s rights are defined as “natural freedoms which all children should have and enjoy”, along with six examples of children’s rights – the right to receive medical care, right to receive parental care, right to food, right to have a home, right to have clothes and right to education, are listed. This poster is remarkable since Uganda has failed to fully incorporate human rights education (HRE) in their formal curriculum at both primary and secondary levels. In recent years, there has been a lot of hype about adopting a rights-based approach to HIV prevention, treatment, and care in the country. While international rhetoric on HIV/AIDS often invokes human rights, putting these ideas into practice remains challenging in Uganda because local policymakers fail to view issues like access to healthcare as an individual right. Therefore, it is extremely important to teach PLHIV about their rights and ways to claim them. First, know your rights and then fight for means to achieve them – this is essentially the core message Mana wants to spread among HIV/AIDS-affected children who suffer from stigmatization, abusive environment, and lack of care.
In Uganda, despite significant progress on curbing mother-to-child transmissions (MTCT), the number of children becoming newly infected with HIV remains unacceptably high. Besides, thousands more are indirectly affected by the impact of the AIDS epidemic on their parents and families. Children-headed households are on the rise. The loss of parental care due to HIV forces children to become breadwinners at a young age, further subjecting them to sexual exploitation and hazardous labor. Gender differences also play a vital role in this context. When a parent falls ill or passes away, it is most likely the girl who will be called upon to drop out of school and support the family. Also, children in foster care arrangements often experience discrimination and domestic abuse. The stigma associated with HIV also contributes to isolation by classmates in school, extended families, and other community members, as well as to discrimination in access to government services.
In spite of these mounting struggles, the Ugandan government seems content to let the poor solve their problems, rather than assuming responsibility for children whose families have been decimated by HIV/AIDS, a legal provision enshrined in the Children Act. Mary told us when the local Ministry of Gender, Social and Development visited the rescue home they recommended sending the children back to their community to let their extended families shoulder the care, already knowing that kinship care is breaking down under the pressure of poverty and changing norms. In fact, due to the enormous growth of unregistered and poorly-functioning private child care facilities, the government considers residential care as the last resort. These organizations have encountered numerous obstacles in securing additional funding and applying for social benefits on behalf of children. It is true that institutional homes, mainly funded by churches and external sources, are hard to regulate. Moreover, their high operational costs imply that this form of alternative care would not be a sustainable solution to the ongoing orphan care crisis. Nevertheless, until the government has the human and financial resources to invest in child protection, helping children left vulnerable by the epidemic apply for school-fee waivers and access to medicine, as well as formalizing community caregivers to provide adequate care and support them, private institutional homes, like Mana, remains indispensable.
