AIDS Orphans and Vulnerable Children in Africa: Identifying the Best Practices for Care, Treatment and Prevention

I. Introduction

Thank you Chairman Hyde for the opportunity to offer testimony on best practices in caring for AIDS orphans and vulnerable children in Africa. My name is Ken Casey, Sr. Vice President and Special Representative to the President for HIV/AIDS initiatives for World Vision International, the largest privately-funded international relief and development organization in the U.S. World Vision has relief and long-term development operations in 25 sub-Saharan African countries, and is operational in a total of 95 countries worldwide.

II. Overview of AIDS, Orphans and Vulnerable Children

Mr. Chairman, as you know, AIDS is a disease that knows no borders. Particularly in Africa, AIDS is not just an epidemic it is an inter-generational pandemic. In the first decade of the 21st century, AIDS will claim more lives than all of the wars of the 20th century. Although sub-Saharan Africa represents 10% of the world’s population, it accounts for two-thirds of all AIDS-related deaths. Some 28 million people in Africa, including 6.5 million children, are living with HIV/AIDS. And with every death there is usually one orphan, but often several.

Current estimates show that today there are 13 million orphans as a direct result of the AIDS pandemic, and 12 million of those orphaned are African. Epidemiologists warn that this is barely the tip of the iceberg: only 10% of AIDS-related illnesses and deaths have been seen. Millions of Africans are infected but have not yet started to fall ill, and according to UNAIDS, 90% of Africans living with HIV don’t even know they are HIV positive.

Experts say that AIDS is far worse than the fabled Black Plague of the medieval period. Unlike the plague and most other diseases, AIDS usually strikes people in their prime. Most people who acquire HIV in Africa become infected before they are 25 years old, and are usually dead before their 35th birthday. This age factor makes AIDS uniquely threatening to families, communities, and economies. In the most heavily AIDS-affected countries in Africa, average life expectancy has fallen from sixty years to below forty: an unprecedented and horrifying drop in just a few years. The worst is yet to come.

As millions of adults lose their lives to HIV/AIDS, millions more children are orphaned, and millions of others are rendered highly vulnerable. Who are the orphaned and highly vulnerable children? At World Vision, we define orphans as children who have lost a mother, a father, or both parents to any cause. This is not an attempt to overlook the fact that the majority of orphans are as a result of AIDS; rather, ‘AIDS orphans’ will not be singled out because parents rarely know of their HIV status. We also define orphans in this way because this helps to prevent stigmatization of children with parents who are HIV+, as well as preventing discrimination against orphans whose parents are not HIV+. Vulnerable children include those whose parents are chronically ill (and thus likely HIV+). These children are often even more vulnerable than orphans, because they are coping with the psychosocial burden of caring for dying parents, while simultaneously bearing the family economic burdens stemming from the loss of parental income and increased health care expenses. Other vulnerable children include those who are living in households that have taken in orphans. When a household absorbs orphans, existing household resources must be spread more thinly among all children in the household. It is more difficult to quantify vulnerable children, however, it is estimated that the number of vulnerable children is at least 2-3 times the number of children who are orphaned.




III. The Importance of Faith Based Organizations in Combating HIV/AIDS and Caring for Orphans and Vulnerable Children

The Role of Faith-Based Organizations in Combating HIV

The vast majority of HIV prevention resources allocated to date has gone to condom promotion, and to the treatment of sexually transmitted infections (STIs). While very important, the pivotal role of faith-based organizations (FBOs) is often overlooked, thus decreasing the overall effectiveness and sustainability of existing approaches. In Uganda and Jamaica, two countries that have experienced a stabilization and a decline in their HIV rate, there is growing documentation that the work of faith-based organizations in HIV prevention through behavior change has made a significant impact in stabilizing and preventing new cases of HIV.

I believe there are 5 primary reasons why faith-based organizations are critical to stemming the tide of HIV:

1. Reach. Faith-based organizations have a very broad presence. FBOs operate between 40-50% of all the health care and educational facilities on the continent. The World Bank estimates, they have capacity to reach 95% of the poor, when facilitated to do so.
2. Call. As a part of practicing their faith, most people in religious communities are called to serve and care for their neighbors or other people in need. This mandate of faith is an important and sustaining motivation factor in the prevention and care for those living with HIV/AIDS.
3. Sustainability. Long after government programs have finished or NGOs have left the area, faith institutions remain and are a permanent part of the foundation of local communities and societies at large.
4. Moral Voice. Because HIV is primarily contracted through sex, addressing sexual behaviors is one of the most important parts of prevention. Faith institutions speak to the deepest human values and beliefs, and are thus best positioned to speak with authority to the intimate practices of individuals and communities.
5. Hope. Faith-based organizations address issues of the spirit, which is at the core of nurturing and restoring hope for those living with HIV/AIDS, and those who have been orphaned by it. In our own experience in the field, those who have hope are the best advocates for prevention.

Because of the severity of the HIV/AIDS pandemic in Africa, no approach or institution is mutually exclusive, but rather all resources must be mobilized. This means that faith-based organizations (FBOs), community-based organizations (CBOs), national and local governments all have vital roles to play, and thus need to be strengthened to address the pandemic and its impacts on children.


World Vision’s Work to Strengthen Faith-Based Organizations and Communities Caring for Orphans and Vulnerable Children (OVC)

Because of the enormous and rapidly increasing number of orphans and vulnerable children (OVC), World Vision believes that providing effective care means looking beyond our existing community operations to partner with faith and community-based organizations in order to reach as many affected children as possible. We have seen that effective care for orphans and vulnerable children involves addressing 7 core needs:
1. Education
· Ensuring that all barriers to primary school attendance are overcome (e.g. fees, uniforms, supplies, stigma and discrimination, etc.)
· Arranging apprenticeships/vocational education for older OVC
2. Emergency nutritional support (when necessary)
3. Referrals and transport to health outreach workers, clinics, and other health facilities (when necessary)
4. Protection against abuse and neglect – through negotiation, advocacy, and referrals
5. Spiritual and psychosocial counseling and support
6. Succession planning (Preparing for the loss of a parent)
a. Memory books and memory boxes
b. Identification of standby guardian
c. Protection of inheritance rights
7. HIV prevention and awareness (Peer education, values education, reproductive health education, etc.)

In addition to addressing this core set of needs, World Vision in partnership with FBOs and community groups, provide other forms of assistance to orphans and vulnerable children based on local needs, strengths, and priorities. In response to requests by these groups, and based on available resources, World Vision collaborates with other partners to provide training, financing, materials, and/or other forms of assistance to the groups for a variety of relevant activities, including the following:
· Training for OVC on how to support themselves and their family (household management skills, negotiation skills, basic agricultural or vocational skills where appropriate, etc.)
· Agricultural training and inputs
· Community-managed day care for young children (under six years)
· Youth clubs focused on HIV prevention
· Provision of treated bednets, oral re-hydration therapy, micronutrient supplements, and related training
· Care for chronically ill adults in the household:
a. Palliative care – simple assistance to reduce suffering, including basic medicines and/or traditional remedies that are safe, effective, and available
b. Nutrition – provision of training and supplements (when available)
c. Hygiene training – to protect from HIV transmission
d. Spiritual and psychosocial support
· Spiritual and psychosocial counseling and support for guardians of orphans and vulnerable children.
· Micro-enterprise development support—primarily through linkages to micro-finance institutions and other institutions specializing in economic strengthening.
· Other activities that benefit OVC, particularly innovative efforts developed by church/community groups and other partners that World Vision can learn from and share widely.

Sustainability

The key to lasting improvement in the lives of orphans and other vulnerable children is sustained care for all OVC by their families and communities. Sustainability is best achieved through strengthening the capacity of OVC-focused community initiatives. World Vision’s current capacity building component entails training, advising, and other forms of technical assistance to strengthen two types of capacities essential for church/community groups caring for orphans and vulnerable children:
1. General organizational development capacities, including proposal writing, planning, budgeting, bookkeeping, monitoring, reporting, linking with information and funding opportunities at district and national levels, local fundraising, etc. Strengthening these capacities will enable church/community groups to improve the quality of their OVC care, as well as to access external resources to expand and sustain their efforts.
2. Improve CBO/FBO capacities specific to caring for orphans and vulnerable children, providing technical support as needed to ensure the seven core benefits noted above.

In partnering with faith and community-based organizations, World Vision works with groups to define criteria for assessing vulnerability within the community. Local groups then take responsibility for identifying orphans and vulnerable children in the community, using the established criteria. Once OVC are identified, the members from the FBO/CBO make regular visits to the homes of orphans and vulnerable children. These group members are trained and supported by World Vision and other partners to enable them to provide quality care for orphans and vulnerable children.

Our experience shows that partneringwith local faith and community initiatives is a sustainable, effective approach to assisting orphans and other vulnerable children in AIDS-affected areas, at large scale and low cost.



IV. Resources

The magnitude of suffering experienced by these children demands our immediate attention. Never before has the world been confronted with suffering of this magnitude; and suffering especially experienced by children.

The $7-$10 billion per year estimate made by the Global Fund is a reasonable estimate of how much is needed annually to confront and turn the tide of this epidemic. The US share of this should be in the area of 25% - 30%. Time and money are indicators of care and commitment. Mr. Chairman, I applaud your leadership and that of this Committee in investing the time to expose and explore the issues of care for HIV/AIDS orphans and vulnerable children in Africa. Allocation of additional resources is the ultimate indicator of our care for African orphans and vulnerable children. World Vision joins the many voices in calling the U.S. to make its full FY2002 contribution of $1billion to the Global Fund, and to commit a total of $2.5billion for FY2003. While the US government has made initial overtures to addressing the AIDS crisis, much more is needed. Mr. Chairman, I respectfully ask you and your colleagues to match your commitment of time with an increased commitment of resources in fighting HIV/AIDS and caring for orphans and vulnerable children.




V. A Model of Learning: Uganda

World Vision has been implementing a major program of assistance for the orphans of HIV/AIDS and war in Uganda since 1990. At the start of the program, HIV/AIDS had emerged as a national crisis, with some of the highest prevalence rates in the world. Distribution of the epidemic was unclear due to the lack of data, but based on the numbers of orphans left behind, the districts of Rakai and Masaka in southern Uganda were considered to constitute the epicenter of the epidemic. Both of these districts, along with Gulu district in the north, had also experienced prolonged period of warfare during the campaign to rid the country of dictator Idi Amin. Both HIV/AIDS and conflict had created many orphans and the number was still on the increase. A rough estimate made by UNICEF at the time indicated that there were anywhere between 500,000 to 700,000 orphans in the country. This number has now increased to more than 1.7 million orphans in Uganda alone.

Implementation of this program has occurred in two distinctive phases. Phase I covering the period 1990 to 1995 entailed implementation of a multi-sectoral program covering the districts of Masaka, Rakai and Gulu. Support for this program came from the Government of Uganda (through a World Bank IDA credit) and World Vision. When IDA funding ended, a major restructuring was carried out beginning 1998. This resulted in the reconstitution of the program into 6 Area Development Programs (ADPs) that received support from World Vision’s Child Sponsorship Fund.

The program started in 1990 with a target of reaching between 30,000 and 40,000 needy children (18 years and under) that had lost at least one parent due to war and HIV/AIDS. However, this criterion was changed soon into the program following in-depth dialogue with communities. Qualifying children became those that a community identified as being very vulnerable following guidelines developed jointly by the community and World Vision. Typically, this criteria took in children that had lost both parents due to any cause and were in the care of (1) elderly guardians (70 years old +) with no dependable income, (2) household headed by other children, (3) households where the care givers were chronically ill (most likely AIDS), and (4) households where the care givers were healthy but where the number of orphans taken in was so large that family food security became a serious problem.

Best Practice: Families Caring for Orphans and Vulnerable Children

In most African societies, institutional arrangements are the exception rather than the norm. In Uganda for instance, only 2,500 children out of a total of more than 1.7 million orphans receive care from the 70 orphanages in country. Capacity is not the issue. The accepted traditional coping mechanism is to integrate orphaned children within extended families. There is a general feeling that children who are raised in orphanages and other institutions will lose out on family life, socialization into their culture, and their identity and sense of belonging to a distinctive community. Further, strong feelings emerged that children of the community should not be put into a situation where they would be raised as second-class citizens. This view was well conveyed by the question of one-woman leader at a focus group discussion: “Do we want to let our children go to institutions so that they will be the ones to be selected for all the jobs people do not want to do?”

Challenges to Informal Fostering

Although fostering within the extended family has always been the preferred method, this system exhibited certain shortcomings at the initiation of the program. Most families were overwhelmed. The scale of AIDS was such that many families were experiencing multiple deaths of relatives, so there were many orphans to support. Extended families were taking in children from outside their own families. The burden was considerable coming as at a time when families were still struggling to recover from the general deprivation brought about by years of civil war.

In many focus group discussions, schooling was stated to be the most critical need for orphans. Extended families would try to send an orphan to school. However, the orphan would be the first child to drop out when family funds diminished. Some people were taking advantage of the orphans; they would speak out at an extended family meeting pledging to take in a particular child, whereas the underlying motive to those people was exploitation of the child’s labor. It was also reported that some people were taking in children in order to gain access to their inherited property.

The lessons from informal fostering are closely linked to the well being of the children involved. The health and nutrition of the orphans became a major issue depending on the age and health status of the orphan. Children of age 0-3 years may be HIV positive or AIDS symptomatic in which case, they will be sickly. Care will be expensive and tiresome. Ages 0-5, are the formative years during which nutrition, stimulation, health, parental love and socialization are crucial. These were not being provided for some orphans, and there were fears expressed by teachers and mothers that the orphans’ personality could be affected.

Foster parents also expressed other crucial needs as well, including difficulty in producing enough food for the household (especially in cases where these were elderly), and difficulty in ensuring children were adequately clothed. The plight of foster parents was aggravated by the effects of war, and the related asset destruction, which had left many of them poor and in need of support to get started. The total effect of this situation was in turn causing orphan siblings to be distributed among several households, at times creating a situation where siblings would never get to see each other. This made the recovery of children from the trauma of losing loved ones especially difficult.

Strategies and interventions

A number of steps were taken to identify effective approaches for addressing the above challenges. Because it was understood progress would be made only when the people themselves took ownership of the solutions, the first step was to get them to fully understand the dynamics of the problem they were facing. Facilitating communities to give their views in focus group discussions as well as discussing with them the results of the baseline survey attained this. In this manner, communities were able to express their views on a variety of options, helping to guide the program as to which interventions would generate community interest and participation. Some of the outputs of this process were:

· Identification of beneficiary families. A process was agreed to as how to go about identifying the most vulnerable households within the community. The names were to be vetted by community committees in an open process. For the most vulnerable to emerge, the process would be repeated several times, since people often did not get to learn about meetings being held the first time. Local administrators or their representative would attend each funeral within their jurisdiction to witness the recording of names and educational characteristics of the surviving children right at burial. This process helped to create a community-managed database upon which selection of beneficiaries was partly based. Qualifying families were those that had taken in orphans and which, in the eyes of the community) needed additional support to be able to cope.

· Target age group: Community dialogue helped raise the upper end of target age group from 15 years to 18. There was a common feeling that the 15-year age cut off would find many children just beginning their high school education. Furthermore, most people were of the view that children of 15 still needed a great deal of guidance and supervision to be able to fend on their own.

· Partnership. Most of all, community sensitization and dialogue helped to clarify at the outset that this was a community program to which WV had come to assist, as opposed to visualizing the initiative as a World Vision program that was seeking community support. This led to the development of community structures that would guide and work alongside World Vision in its efforts. Agreement was also secured as to which activities World Vision should assist in and which activities would best be left to the community. Through this dialogue it quickly emerged that the best way to support orphans was to devise a multi-sector package of interventions that combined direct support to the children themselves while at the same time assisting families and communities to recover. A summary description of the interventions is presented in the Addendum.

Project Delivery

The delivery of project services was achieved through partnership between community members and a team of full time employees based at parish, sub-county and district levels. Parish development workers (PDWs) were selected in conjunction with communities. Their role was to ensure that all planned project activities were implemented at the grassroots level. Each sub-project had a total of 60 PDWs. These were coordinated by sub-county based development workers, and by a team of technical staff at district level. These were qualified in health, social work/ counseling, agriculture, rural extension and finance.
Project staff collaborated with existing structures for effective and sustainable implementation. These structures included operational ministry staff, RCs and chiefs, and other NGOs with complementary programs. Collaboration would ensure that projects complemented one another and that duplication of effort was avoided.

Communities played a significant role in planning and implementation, and in the monitoring and evaluation of program goals and activities. Communities were encouraged to commit their own resources so that they became real partners in the program. Program committees were set up and operated at parish, sub-county and at district level.

The parish committee was made up of elected representatives from each of the villages within the parish. The sub-county committee was made up of elected representatives from each parish committee. Members of the sub-county committee then elected a representative to the project management committee. Other members of this committee included respective civil servants in the area, who would attend as ex-officio. Each committee elected its own chairperson as well as secretary. The main functions of the committees were to motivate communities, provide feedback to project staff about community views about the program and to indicate whether changes were needed. The project committee at the district level, in particular, played the critical function of providing both community and then local government input to the program.

Role of Other Organizations

World Vision actively collaborated with a number of international and national NGOs in order to increase effectiveness on the ground. Working under the principle that no single agency could alone address all issues related to HIV/AIDS, agencies in the field developed multiple forms of collaboration, including referral of cases that some agencies could not handle to those that could.

World Vision worked with a number of other NGOs to form the umbrella organization called Uganda Community-Based Orphan Care Association - a forum for sharing information, coordinating action, and undertaking joint advocacy. This forum met with government, donors, and other key stakeholders on a regular basis to exchange information. It provided vital input into the formulation of policies regarding the conditions under which orphanages should be established. It made responses into the draft legislation on inheritance and the rights of widows and orphans. It has remained a vocal entity on issues of child protection, and was instrumental in calling for the establishment of a special wing of the police to address issues of child abuse. During the 1995 political campaign, this group framed education of orphans into a major campaign issue. Further input was made into other networks active in the Uganda Debt Network and in the preparation of the country’s Poverty Reduction Strategy Paper (PRSP). The outcome of this process was to strengthen the commitment of the country to the launch of the Universal Primary Education (UPE) program in 1997, which eliminated primary school fees for all children in Uganda



V. Conclusions

The HIV/AIDS pandemic in Africa has left in its wake at least 13 million orphans and 2-3 times the number of vulnerable children. The massive and growing number of orphans and other vulnerable children in HIV/AIDS-affected areas constitute a humanitarian and development crisis of unprecedented proportions. If the international community does not respond immediately and at large scale to this crisis, the potential threats to national, regional, and global security and stability will be severe. A generation of marginalized young people who grow up without guidance and support are highly susceptible to recruitment by terrorist networks, warlords and guerilla groups, criminal gangs, and other forces who can tear societies apart.

In the face of this crisis, faith and community-based organizations have been effective partners in promoting HIV prevention and providing sustainable care both for adults living with HIV/AIDS and orphans and vulnerable children. Churches and other faith-based organizations are especially well-positioned to provide quality care for orphans and vulnerable children, as well as those living with HIV/AIDS, because they:
1) have a wide reach and presence in most communities;
2) have a spiritual call to serve and care for neighbors, especially those who are needy;
3) have a moral and authoritative voice on the personal issues related to HIV transmission;
4) provide a sense of hope and empowerment to those living with and affected by HIV/AIDS.,
5) they have a lasting presence in communities, which is essential to sustainable and effective care for orphans, vulnerable children, and those living with HIV/AIDS.

World Vision has been a leader in innovative care for orphans and vulnerable children since the early stages of the HIV/AIDS crisis. In some of the world’s most heavily AIDS-affected areas, World Vision is working in partnership with communities and faith-based organizations to address the seven core needs of orphans and vulnerable children:
1) education support;
2) emergency nutritional support (where needed);
3) referrals and transportation to health outreach and social workers (where needed);
4) protection from abuse and neglect;
5) spiritual and psychosocial counseling and support;
6) succession planning to prepare for parental death; and
7) HIV prevention and awareness.

The OVC crisis will continue to widen and worsen for at least another decade. The severity and duration of the crisis demands strategic and decisive action. Efforts by World Vision and other international humanitarian organizations to assist orphans and vulnerable children can only be sustainable when they are undertaken in partnership with local faith and community organizations. Likewise, when there is local and international partnership with governments of goodwill, like the U.S. who will commit to providing political and financial support, best practices will always result.