Expert Witnesses’ Testimonies

Robina Ssentongo

Executive Director, Kitovu Mobile AIDS Organization, Uganda

Kitovu Mobile was started in 1987 by the Medical Missionaries of Mary, to provide medical, psychosocial, and spiritual support to people infected and affected by HIV and AIDS, through a mobile service reaching far into the rural hard to reach areas. The conviction driving my organization’s work is that people suffering from HIV and AIDS should be cared for close to where they live. For this reason, we are committed to strong community involvement, and Kitovu Mobile has more than 750 community volunteers who work with us to accomplish our mission in seven districts of Southern Uganda. We have helped to change the lives of thousands of people, by ensuring that a continuum of care reaches them directly in their communities—extending from general healthcare, to healthy living, to good ART management and to economic empowerment that helps people struggle out of the ‘poverty bind’. Our vision is to see empowered communities that are able to cope with HIV and AIDS and its impacts.

We began our Grandmothers’ Support project to respond to the desperate circumstances of so many of the grandmothers who have been left with responsibility for taking care of orphans and other household dependents as a result of AIDS.

Especially for the poorest grandmothers, the burden can be overwhelming. Healthcare services for older persons are inadequate, and even where they are available, grandmothers have to travel long distances to access them. They lack all of the basics, such as food, shelter, clothing and security. Grandmothers also lack the key resources, such as land, other assets and capital, needed to generate income to sustain themselves. They are often seen as not credit “worthy,” and can be exploited in the marketplace due to their lack of information. Most of the grandmothers rely on subsistence farming, and many can’t afford to meet their daily needs. And their own human capital is depleted by age, poor nutrition, sickness, overwork and social isolation.

Grandmothers are frequently abused in the community, but rarely seek legal support because of limited knowledge and inaccessible and unresponsive legal systems. In the community, AIDS has broken down the social network and the respect that should be given to the older generation. People ignore the grandmothers’ needs, thinking that because they are old the effort would be wasted, and they are excluded from mainstream development programmes. The grandmothers caring for orphans have become one of the most vulnerable groups affected by the HIV and AIDS pandemic. Kitovu Mobile is doing everything we can with the resources we have, but the great majority of poorest grandmothers are simply beyond our reach. I’d like to speak with you today about some of the most pressing healthcare related needs so many grandmothers are still facing, and what must be done to meet these needs adequately.

Most grandmothers don’t know very much about HIV— how you get infected, how you prevent infection, how to manage infection, or to go for testing themselves. They really don’t understand the importance of having their own HIV tests done. Then, for those who are willing to get tested and treatment, there’s a real problem accessing public healthcare. The facilities are often located too far away, and the grandmothers often have limited mobility and no resources to pay for transport. When they can get themselves to a facility and get a prescription, the medicines may be too expensive, or, if they are free, they are often out of stock at public facilities and need to be purchased from private clinics or pharmacies.

Grandmothers who have many health problems can wait for hours and hours in line ups, and at times do not understand what they are being told. Many of the medical personnel are not warm in receiving the grandmothers. They feel “this one is already old” and not worth helping, and sometimes a bribe is even required to get adequate care. This makes it impossible for the grandmothers, who are very vulnerable. The attitudes are often a big problem, especially in public facilities where the staff are not trained in geriatric care.

We really have to change the way that healthcare is being provided to the elderly in Uganda. The government already has taken the first steps. In 2009, the government launched the National Policy for Older Persons, and followed this in 2011 with the National Plan of Action for Older Persons 2011-2015. A law establishing the National Council for Older Persons came into force in 2012. But the plan is still not known by many people, and it still hasn’t been put into action. One of the most important parts of the plan is that older persons are supposed to be elected from the village level to speak for the older persons at the national council about their rights and needs and what should be done.

This has to happen as soon as possible, so that we can start designing and implementing the strategies that will give grandmothers access to the services they need. Once the national council is actually up and running, and it’s given the mandate and resources it needs, it could really become the voice of older persons in Uganda. There is already the National Network for Older Persons of Uganda (NNOPU), a civil society umbrella body that represents older persons, and provides a strong and united advocacy voice. However, it is not funded by the government and lacks the resources to undertake and fulfill its mandate adequately.

But let’s be very clear here. Yes, it is important for us to press for action with the government so that the national plan for older persons is actually implemented. However, a national plan certainly doesn’t replace the need for community-based care. Instead, this plan should be supporting and up-scaling the type of community-based care that organizations such as Kitovu Mobile are providing right now.

Through years of experience, we’ve developed a process for working with grandmothers that really does help them turn their lives around, even in the face of so much difficulty.

We start by tackling the isolation suffered by so many grandmothers. Some feel stigma from the community because of HIV, but they also stigmatize themselves. They feel they are bad luck because they have lost so many children. They’re worried that they might have HIV, and they don’t reach out to others. And the people around them have no interest and ignore them. They don’t understand what grandmothers need, that they need encouragement and help through their bereavement, that they’re caring for so many orphans, and that their houses are collapsing. So we work with the communities to educate them about the problems that the grandmothers are struggling with. And then we make the community part of the solution.

In every new community, we ask them to identify the 100 grandmothers who have the greatest need and should be helped by Kitovu Mobile’s programme.

The first step for the grannies that the communities pick out is to get to know their general status—their medical problems, healthcare needs, whether they have enough food to eat and if their house is safe. We help right away with urgent needs like medical care, food and housing. Then we think about their emotional needs. We set up solidarity groups for the grandmothers so they can share, know they are not alone, and see that there are others with the same, and even worse, problems. They need bereavement counselling to mourn the deaths they have suffered. They share and cry until they are able to cope.

When the person has been helped medically, socially and emotionally, she is no longer hopeless. She can say to herself “I have these orphans, but it’s not the end of the world, there are people who care, and the children are growing”. That’s when we start to give them training. We say to them “We gave you maize and flour in year one, but you have to find a way to live—what skill do you think you can learn?” They choose to raise pigs or goats, or to make products they can sell in the market. We empower them to realize they can make a livelihood for themselves, and give them assistance to do it. And we train some of them as “contact grannies”, who can transfer their skills to their peers when we are not there. We lobby to get some funds for the grandmothers’ solidarity groups, and they save their own funds as well, so they can help one another. This way they are not dependent on the project for assistance, because they build their own community support.

The grandmothers’ groups get bigger and stronger as more members join—they may start with 25 or 30 people, but will grow to 150 people, all working to support each other. We also help the children to form clubs to get peer support, give them counselling, and behaviour change programmes, because the children of grandmothers can be in such chaos. Their grandmothers are tired and overburdened. We make sure that the children understand that they have to grow up in a good way, and work with their grandmothers to make sure their families are okay.

All these phases work together holistically to change the grandmothers’ realities. Kitovu Mobile’s approach gives them so much more than services—the grandmothers are regenerating and reclaiming their sense of purpose in life.