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Principles to Guide Programming
for Orphans and Other Children Affected by HIV/AIDS The 12 Principles
These principles are intended to guide action at local, district, national and global levels in the development and expansion of initiatives to address the needs of vulnerable children and adolescents in countries and communities seriously affected by HIV/AIDS. Children, families and communities alone cannot achieve these objectives. Governments, international organisations, religious bodies, the private sector, and all levels and sectors of civil society must commit time and resources and find effective ways to plan and work together in keeping with the principles presented in this document. Discussion of the principles will expand and strengthen the circle of caring partners who assume responsibilities for protecting the rights of orphans and children affected by HIV/AIDS. 1. Strengthen the
protection and care of orphans and other vulnerable children within
their extended families and communities The foundation of an effective response that matches the enormous scale and long-term nature of the impacts of HIV/AIDS on children must be to reinforce the capacity of families and communities to provide protection and care. In each community, effective systems must be developed and strengthened to monitor the status of the most vulnerable children, and to identify, prevent, and mitigate exploitation and abuse. Many grassroots groups are demonstrating how this can be done. Some orphans, at least temporarily, do not have an acceptable possibility of family-based care within their own community. For them, efforts are needed to expand fostering, adoption, and other types of alternative care that more adequately meet children's needs. Small family-type group homes integrated within children's own communities are one option. Institutional care, in which children are cared for separately from the surrounding community is, at best, a last resort for children with no better option. Institutional care generally does not meet key developmental needs of children, and conflicts with the right of every child to live and develop in a family environment. When children grow up without family and community connections, they are cut off from the support networks they will need as adults, as well as the opportunities to learn the skills and culture that children learn in families and communities. Very hard lessons have been learned by countries that tried institutional care in the 1980's in response to famine and armed conflict. Many young adults who have grown up isolated from their communities of origin in such facilities are having great difficulty reintegrating into society and becoming self-supporting. Many lack the social connections and cultural skills to function and to support themselves. Existing institutions do have at least an interim role to play in caring for children for whom no better options are available. But increasing institutional care will not help to solve the problem of an increasing number of orphans due to AIDS because, where households are under extreme economic pressure, as more places are made available in institutions, they will be filled by children pushed out of households to fill those spaces. This pattern has been repeated in many situations, where parents or relatives believe that institutions offer the possibility of food, school, and better shelter. Leaving aside substantial construction costs, the resources needed to support institutional care for a single child can assist many more children if used to support an effective community-based initiative. Building more orphanages, effectively, becomes a very expensive way to address poverty. 2. Strengthen the economic
coping capacities of families and communities There are various ways to reduce the economic burden of poor households. School fees and other costs associated with schooling may be reduced or eliminated. Medical and drug costs may be subsidised or reduced. Welfare assistance, food baskets, or similar material assistance can be provided. The issue of sustainability is often raised in this context, and should be considered in conjunction with viewing cost reductions as essential investments for economic well-being and national stability. Projects that benefit the wider community can increase economic resilience, such as cooperative work schemes (e.g., community harvesting) or development of better roads to allow more efficient access to markets. Many of these actions can be identified and carried out by the community itself. Microfinance programmes (which usually include both savings and credit opportunities) have also shown good potential for sustainable, cost-effective economic enhancement in communities seriously affected by AIDS. However, such initiatives should not be seen as an intervention that is going to pull destitute households out of poverty, but one that helps poor households to increase income flow, increase food security and help cover health and education expenses. Microfinance services have not been successful when targeted specifically to households already seriously debilitated by AIDS related illness or death. However microfinance services can help strengthen the economic coping capacity of poor households able to carry out microbusiness activities. In areas seriously affected by HIV/AIDS, where many households are caring for orphans, increasing household income helps both to meet immediate needs and accumulate resources to better withstand future impacts of AIDS. 3. Enhance the capacity
of families and communities to respond to the psychosocial needs
of orphans, vulnerable children, and their caregivers Since psychosocial problems are less tangible than material needs, they are often ignored by programmes, and yet can have long-term impact on development. If developmental rights are not fulfilled, a child may have difficulty relating to a care provider or others, and may demonstrate behavioural or psychological problems. Children's psychosocial difficulties are often compounded by silence. In many cultures it is taboo to discuss an impending death for fear of making it happen. A fear of being stigmatised leads some families to deny that an illness is related to HIV/AIDS or to forbid discussion of it. In this climate of silence, children's fears and questions about their own future are neither acknowledged nor discussed. After the death of a parent, children's grief is compounded if siblings are separated to live in different households or if new stepparents or guardians fail to provide nurturing care. Such losses can cause invisible wounds that may never heal. If the feelings of children in such situations are not properly addressed, they often withdraw, resign, and isolate themselves. It is therefore of great importance to provide preventative psychosocial support for children. Failure to do so can result in a 'second generation' of problems, which may include alcohol and drug abuse, violent behaviour, suicidal tendencies, unwanted pregnancies, and sexually transmitted infections (including HIV infection). Addressing children's psychosocial needs does not necessarily require separate programmes, but relevant measures should be incorporated in to other activities with the potential to reach AIDS-affected children. Such measures include community efforts to promote the psychosocial well-being and social integration of vulnerable children and adolescents in general, as well as efforts to provide emotional support to individuals who are isolated, withdrawn, or showing other signs of distress. A particularly appropriate response at the household level is for an ill parent and his/her children to develop a memory book with important family information and plans for the children's future. This is a valuable part of the succession planning that can contribute to a child's adjustment after a parent's death. Schools also play many important roles in psychosocial support. Schooling itself helps normalise life and promote children's social integration. With training, teachers can identify signs of distress and provide appropriate emotional and psychosocial support. Students can help support their peers, learn ways to advocate compassion and care within their communities, and reduce stigma. Support must also be given to the caregivers of orphans and other HIV-affected children by training outreach workers and through community volunteer efforts. 4. Link HIV/AIDS prevention
activities, care and support for people living with HIV/AIDS and
efforts to support orphans and other vulnerable children Similarly, programmes tend to be organised around specific professional capabilities. But the HIV/AIDS-related problems that children and families are struggling with do not divide themselves into such categories. They are complex and interrelated, and cannot be addressed adequately by any single intervention. They demand multi-sectoral and mutually reinforcing programme strategies. Such integrated programmes respond to the reality that the vulnerability of children in HIV/AIDS-affected households begins long before the death of the child's parent(s) and continues after their death. Programmes that focus on care for vulnerable children within the context of the greater population of people living with HIV/AIDS can be especially effective in HIV prevention. Providing care for children and adults affected by HIV/AIDS has the potential to stimulate among community participants a more realistic assessment of personal risk and of potential consequences for themselves and their families. Many caregivers have begun to promote prevention as a result of their familiarity with the effects of HIV/AIDS and recognition of the urgent need to prevent additional sickness, death and orphaned children. Prevention messages that are conveyed by a family member, friend, or acquaintance are likely to have a greater impact on the recipient than messages conveyed by an unknown outsider. Assisting ill parents to live longer through appropriate treatment and support for their care at home is one of the most important areas for action to benefit their children. Many people die of opportunistic infections treatable with inexpensive medications. Making medicine and food available through home based care and support programmes can benefit both parents and children. 5. Focus on the most
vulnerable children and communities, not only those orphaned by
AIDS If an outside agency specifies which category of children (e.g. orphans) the community should assist, in effect, it is assuming responsibility for action. Such an approach undermines a community's sense of ownership and responsibility. Targeting specific categories of children can lead to increased stigmatisation and discrimination and increased harm to those children. Orphans are not the only children made vulnerable by AIDS. Problems start for children and adolescents long before a parent dies due to AIDS. The psychosocial distress and economic problems typically begin with awareness of HIV infection or illness. Areas made vulnerable by HIV/AIDS can and should be targeted, but within those communities, assistance should be directed by organised residents to their most vulnerable children and households, regardless of the specific causes of vulnerability. Stronger efforts are needed to respond by utilising a rights-based approach. While direct support for these children and their families is often provided, this approach has often led to a shortcoming in addressing the underlying causes of vulnerability. This is caused by a failure to identify the main duty bearers at all levels in relation to those children, their obligations, and the support they require to enable them to carry out their responsibilities. 6. Give particular
attention to the roles of boys and girls, men and women and address
gender discrimination Because of their social status, girls and women have an increased vulnerability to sexual abuse and exploitation. They often lack the skills or the power to exercise their own choices regarding sex, which can increase their exposure to HIV infection. Orphaned girls, or girls living in otherwise HIV-affected households are especially vulnerable, and programme interventions to protect them from abuse and possible HIV infection are needed. It is important that men assume greater responsibility in child-rearing and providing care for those who are ill and in daily household tasks. This often requires a societal shift that allows men to feel comfortable in assuming new responsibilities, and is one that can be encouraged through training in care practices and public advocacy. In many countries, women are often discriminated against by statutory or traditional laws that do not allow them to own land or that prohibit widows from inheriting land or property. Such laws and policies—along with the systems for the administration of justice—should be changed to ensure and protect basic rights of women and girls. It is essential to identify gender-based discrimination and to integrate gender concerns into all aspects of programming. 7. Ensure the full
involvement of young people as part of the solution Hopelessness and a sense of powerlessness are two of the biggest obstacles to effective prevention efforts. Efforts to help young people gain more control over their lives and develop hope for a worthwhile future increase the likelihood that they will choose behaviours that enable them to avoid HIV infection. Children in households with chronically ill parents or caregivers
should be able to participate in decision-making processes regarding
their future foster care. This is integral to succession planning,
which is intended to help HIV-positive parents give their children
the support they need and to prepare for the future. Inheritance
rights are less likely to be violated when a parent makes known
a succession plan. 8. Strengthen schools
and ensure access to education Education systems have essential roles in fighting the spread of HIV/AIDS and coping with its impacts. From school level to ministerial level, they must be an active part of the response. Schools can involve children in building and reinforcing community capacities to prevent HIV infection, and in providing care and support for affected children and families. Solidarity clubs in schools carry out activities such as HIV peer education for young people who are not in school. Students can receive examination credits for community service such as child minding, home-based care, and for providing basic labour for affected families, such as household cleaning and the provision of water and firewood. The schools themselves, with their physical infrastructure and human resources (teachers, students, and parents), can also serve as community resources and information centres. They can provide training and skills development for caregivers and families, and monitor the status of children's rights within the community. Schools also need to take a much more active role in preventing children from dropping out and enrolling all children in school. Principals and head teachers must not only manage the school, but also work with community leaders and organisations to identify children out of school and ensure that their right to education is fulfilled. Administrators, school principals and parent teacher associations must recognise and address the ways that HIV/AIDS is weakening education systems through teacher illness and deaths. They must also confront the reality that some teachers take sexual advantage of students. Schools should be places that are not only stimulating but safe, secure and healthy places for all children, by improving the quality of their physical structures (e.g. latrine facilities for girls and boys separated), providing higher quality and more relevant learning, and promoting zero tolerance for violence and abuse in all learning institutions. 9. Reduce stigma and
discrimination Stigma and discrimination increase the pain and discomfort already experienced by those who are affected by HIV/AIDS, and often threaten the effectiveness of prevention and mitigation efforts. Fear of being identified as a person living with AIDS often keeps people from seeking treatment and care, discussing prevention, or changing unsafe behaviour. Fear and discrimination often block care and support for people living with HIV/AIDS and their families. Specific efforts to address and reduce stigma and discrimination must be an integral part of all care, support and prevention activities. The work of religious leaders and organisations in reducing stigma and discrimination at community level has proven highly effective in many countries. National anti-discrimination policies and legislation are needed to address discrimination through legal systems. Broad-based action to reduce stigma, discrimination and fear at all levels will ultimately provide a more conducive environment for the protection and care of HIV-affected children and the realisation of their rights. Such environments facilitate arranging family-based care for orphans and keeping siblings together. The visible participation and positive actions of people living with HIV and AIDS is critical to transforming fear and discrimination into compassionate support. Giving human faces to HIV/AIDS helps convert the pandemic from "their problem" to "our problem." 10. Accelerate learning
and information exchange Future efforts to wisely use the resources that are available must incorporate lessons learned from current efforts through systematic monitoring, evaluation, research, and dissemination of findings. Examples abound of effective programmes, and these must be documented and the lessons widely disseminated. Commitment is needed to identify the types of rights-based approaches that are most effective, efficient, and sustainable; to identify the conditions under which they are most appropriate, and to share lessons learned with local and global partners. Linkages, networks, cross-site visits and other methods of information exchange are essential to building effective, collaborative responses to children made vulnerable by HIV/AIDS. 11. Strengthen partners
and partnerships at all levels and build coalitions among key stakeholders
12. Ensure that external
support strengthens and does not undermine community initiative
and motivation Central to the provision of external support must be the recognition that families, communities and the children themselves are at the front-line of the response to HIV/AIDS and its impacts, demonstrating enormous capacity to care for and support vulnerable children and adolescents. It is imperative that governments, donors, non-governmental organisations (NGOs) and religious organisations focus on strengthening and supporting these ongoing efforts of families and communities. Community ownership is of paramount importance. Recognising this, they must adjust their traditional approaches and engage in long-term partnerships to support, strengthen and sustain grassroots initiatives with technical support and modest amounts of ongoing funding. Money cannot lead the process of community mobilisation but it is needed to help strengthen and support it. Programme interventions with children and communities must take into account the long-term nature of AIDS-related problems and impacts. Interventions developed today must respond to the need for wide-scale, long-term efforts that address both the direct and indirect impacts of AIDS on children, families and communities.
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