Children and HIV/AIDS in Indonesia

excerpts from

A Situation Analysis

 Researched and written March - April 2004

by Laine Berman

for

Save the Children UK

AIDS in Indonesia is fed by a wide range of human rights abuses from sexual violence, the marginalization of sex workers and intravenous drug users, lack of education services, lack of access to testing and counselling, and specifically the violation of children’s right to protection, education, and information on HIV transmission and prevention. Among prison populations, HIV has risen drastically because of lack of access to condoms, and harm reduction measures for drug users. Prisoners eventually go home and infect their wives and girlfriends. Human rights violations are multiplied again via the stigma toward high risk persons, which further marginalizes them and exiles those who most need information, prevention services, and treatment. Then, there are the partners of ‘high-risk’ groups, who become infected with HIV/AIDS and are then branded as belonging to one of these stigmatized groups.

Research on AIDS in Indonesia (as elsewhere) is an investigation into multiple levels of rights violations, including silence, violence, rejection, fear, abandonment, social inequality, lack of privacy, poverty, ignorance, religious dogma, corruption, and the domination of international agendas. But it is also a vehicle for progress and change, focusing on building and strengthening protective measures and advocacy, legal and cultural protections for children, families, communities, and persons affected by or at risk of HIV/AIDS. The regulations, the funds, the networks, and the support are already in place. Real consolidated action must follow.  

While broadly recognized in Indonesia as a threat to specific high risk groups, HIV/AIDS is also a threat to child development. With such a heavy focus on commercial sex workers (CSWs) and intravenous drug users (IDUs), it is far too easy to overlook children and their rights, roles and our obligations to them in the HIV/AIDS picture. Compounded by poverty as a major cause and consequence of the AIDS epidemic, children loose their rights to:

·    survival, development and protection from abuse, neglect, sexual, and economic exploitation;

·    participate in decision making in matters concerning them;

·    have their best interests as the primary consideration;

·    be free from discrimination.

Responses to the epidemic thus must make sure that children are not omitted from participation in the planning and implementation of HIV/AIDS programmes and as part of their greater involvement in civil society. Youth representation in the development of national HIV/AIDS plans and poverty reduction initiatives is not an option but a necessity.

Role of Education

Case studies from Africa, India and Thailand show how children with HIV/AIDS or those who have lost one or both parents to HIV/AIDS, often experience discrimination and exclusion from the community. In Indonesia, where testing is still rare, prolonged illness and the inability to work for whatever reason translates into children leaving school and taking over the responsibilities of adult wage-earners. As street or working children, they are stigmatized as ‘children who produce social problems’. Just as poverty has done, once widespread testing and seroprevalence become known, the HIV/AIDS epidemic will have a critical direct and indirect impact on the education of children due to discrimination and exclusion, as well as loss of funds for schooling and the need for them to financially and emotionally make up for the breakdown of the family unit. Yet with no widespread testing, how will agencies know which of the thousands of street and working children are on the streets because of AIDS? With estimates as high as 18,000 AIDS orphans already in Indonesia, the government must act to ensure that no children are excluded from access to primary schools, health care, and basic protections.

The capacity of the education system to protect children is fundamental. But, the GoI has yet to make best use of available resources to achieve compulsory and free primary education. The regional autonomy (1999) movement has further undermined the full realization of this basic right, throwing this fundamental responsibility away from the central government and onto the shoulders of 30 regional, autonomous governments, each with its own problems. A truly compulsory and free primary education is not only an important right. It serves as a key towards the fulfilment of other children’s rights such as the right to free expression and the right to be protected from economic exploitation[1].

Reproductive health education is not offered in Indonesian schools because society and the authorities still believe that discussing sex only encourages promiscuity. Such concerns have been proven wrong. Yet the persistence of such avoidance results in confusion, fear, and anxiety among teenagers living in a more globalized, permissive society, with pressures from the media, peer groups and other people close to them[3]. For many children HIV/AIDS education starts too late, once they have become sexually active. It is essential to begin informing girls and boys about HIV at a younger age, so that when they do become sexually active, they are equipped with the knowledge and skills that will reduce their risks of early pregnancies, contracting STIs, and HIV. The UN Declaration of Commitment on HIV/AIDS aims to reduce the prevalence of HIV infection by 2005 in men and women aged 15–24. This translates into practice as providing today’s ten-year-olds effective life skills education.

As behaviour studies reveal, reproductive health and HIV/AIDS prevention are not reaching the majority of the Indonesian population[4], and young people in particular find it very difficult to gain access to HIV prevention messages and sexual health services[5] even more so as they become increasingly ‘out of reach’ after leaving school. Outreach through peer educators and clinic-based structures is essential in order to provide sexual and reproductive health information and services to young people if any response to HIV/AIDS is to be sustained. Orphans and vulnerable children are not just those already personally impacted by HIV/AIDS – all Indonesian children are at risk as long as open discussion of sexual health and honest reflection and acceptance of the issues of economic, political, and social poverty remain clouded in silence. Key programming principles must provide a framework for the development of a broader holistic response to the problems. The main aspects of these principles are;

_ to expand coverage to include all children and communities;

_ to give particular attention to the gender-specific needs of boys and girls;

_ to involve children and adolescents as part of the solution;

_ to strengthen the role of schools and education systems – both formal and informal;

_ to strengthen the role of health care and monitoring systems – both formal and informal;

_ to reduce stigma and discrimination;

_ to ensure that external support does not undermine community initiative and motivation.

These programme principles are based on the respect of basic human rights and are fundamental to effective care and support and the development of a broadly united cultural coping capacity. 

HIV/AIDS needs to be mainstreamed into the general national debate for both the education and health sectors, as this is the key to a sustained commitment that is perfectly in line with Indonesia’s national development plan. Attention cannot focus on HIV/AIDS in isolation without also rebuilding the community public health care systems and strengthening educational access and quality. Then, there is the intolerable increase in poverty and the compounding effects this has on HIV/AIDS and specifically children. Further problematic to both the development program and HIV/AIDS prevention initiatives is the general neglect for people living in rural areas, as evidenced by the almost total absence of state services available to them. The promise of financial gain lures young women into cities in search of jobs in factories, as overseas labourers, and in domestic service, where family support and protection is gone. No government agencies protect these vulnerable women, many of whom are well under 18 years old and have dubious agencies ‘assist’ them by creating false identity papers. Where ever children are not in schools, they are often on the streets, in the fields, in domestic labour in private homes, in market stalls, earning money for their families or just to survive. With no monitoring facility and no legal defences, these children are not enjoying their rights to education, health, and safety from exploitation. Where ever weaknesses in state services exist, HIV enters to make things worse.

Yet while it is easy to criticize Indonesia’s malaise in responding, and recognize the bitter naiveté of the popular perception of the disease as ‘someone else’s problem, worldwide initiatives are also largely ineffectual, not living up to their commitments, and falling short of the principles of civil society participation. HIV/AIDS requires an integrated community-owned response, a comprehensive package of strategies in response to a combination of problems, by recognizing the interconnectivity of all sectors and populations to act collectively and with a common purpose. Integrated community care involving HIV/AIDS knowledge and prevention, care and treatment, the rebuilding of community health services, the strengthening of a truly compulsory and quality education system, and the promotion of economic self-reliance are needed. All must recognize their own vulnerability if a truly successful program is to revert this major disaster.

Focus on Indonesia

Ten years after founding a National AIDS Control Commission (KPA) to prevent and control the spread of HIV/AIDS in 1994, real political will on the part of the Indonesian government has begun to emerge. The trigger came as recently as 2001, when results of limited surveillance testing revealed concentrations as high as 53% among specific high risk groups. Worst case scenarios on Indonesia were now becoming reality, and in the wake of the UN Special Session on AIDS in 2001, a cabinet level session on HIV/AIDS was convened to revise the role of the National AIDS Commission.

Yet advancement in facing Indonesia’s pressing realities are severely hampered by four factors:

1) lack of information: cultural and religious obstacles prevent open discussion of sexual, and high risk behaviours.

2) economic hardship: issues of personal health and the health of one’s children are subordinate to issues of economic need.

3) HIV: the disease itself is largely invisible and what is not directly impacting a family or a community is not seen as a pressing problem.

4) information systems: information provided is veiled in euphemisms, medical terms, foreign loan words, threatening terminology, and focused on the negative activities of specific groups.

News media and human rights reports show high occurrences of harassment, violence, and terror by organized gangs, police, communities, and families toward high risk groups and people with HIV/AIDS (PWA)[7]. By 2004, religious groups have yet to be fully convinced that AIDS, condoms, and plain talk about sexual health are not just “Western” issues but that they can be appropriate in an “Asian” society[8]. The majority of information released to the public is still based more on scare tactics that create and maintain irrational fears against HIV/AIDS. The emphasis on intravenous drug users (IDUs), sex workers (CSWs), and transgendered men (waria) as the main risk population, has fomented a huge gap between who is at risk and who is safe in the minds of the general public. Thus, stigma and discrimination are increased as myths of ‘no cure’ and personal fault prevail.  While Indonesia has failed to meet most of the prevention and care goals established at the 2001 special session on AIDS (UNGASS), this failure is most prominent in contexts where children are concerned[9].

Numbers of children in sectors vulnerable to HIV/AIDS[10]

[10] Source: Rosenberg, R., ed. (2003) Trafficking of Women and Children in Indonesia. ICMC: Jakarta; Updated with Komnas PA reports; DepKes 2003 reports.