ABSTRACT
Understandings of HIV/AIDS governance have thus far focussed upon the role of international organisations, the state and the operations and effectiveness of national AIDS councils from the perspective of national government and international funding. It is widely accepted that HIV/AIDS has most severely affected people in poor and marginalised communities, and the scale of grassroots contributions to mitigating the effects of HIV/AIDS is increasingly well documented and understood; the realities, capacities and priorities of community practitioners are regularly excluded, however. Moreover, a gap exists between the mandates and intentions of national AIDS councils and the realities facing communities affected by and coping with HIV/AIDS. Through a case study detailing the community response to HIV/AIDS led by an organised group of home-based caregivers, this chapter offers a model for closing this gap between intention and reality, and investigates how alternative funding mechanisms might function. Where investments of resources and time have been made in organisation
and leadership development, organised groups of grassroots women have been able to use the urgency created by the AIDS epidemic to strengthen the position of women within local level decision-making and resource allocation structures – women who are generally marginalised and excluded from such institutional processes. The unprecedented devastation caused by the AIDS pandemic, and the spotlight it has shined on poverty and gender inequality in Sub-Saharan Africa, has created international political will and mobilised significant resources that are in turn creating unique opportunities for grassroots women’s organisations to build women’s empowerment, strengthen their constituencies and promote good governance, accountability and transparency. While there are multiple complex challenges associated with the decentralised funding structures that have been established in countries like Kenya,
this chapter will demonstrate that these can be overcome through direct support for grassroots women-led initiatives. Where investments have been made in grassroots women-led organisation, women have been able to build partnerships with local government, thereby improving governance processes, accountability, transparency and service delivery. The chapter proceeds in the following manner. First, it provides an over-
view of the AIDS epidemic in Kenya and the response to the epidemic both by the government of Kenya and by home-based caregivers, setting the context for our case study. Second, through a case study the chapter will demonstrate that home-based caregivers are uniquely positioned to improve the governance of AIDS structures starting at the local level through facilitating dialogues between communities and the councils and governmental structures charged with responding to AIDS. The chapter concludes with a set of recommendations based on the lessons learned in the case study, arguing that investments need to be made in organising and building the capacity of women to engage in structures, and local AIDS authorities need to be pushed to establish permanent mechanisms to involve organised groups of citizens. This chapter argues that the process of decentralised funding and political
responsibility within the global response to HIV/AIDS is creating a unique opportunity to create partnerships between civil society and local government to build good governance, accountability and transparency. The creation of these decentralised mechanisms has been vital in bringing funding and decision-making power to where the government meets the community. However, the structures and mechanisms are in many cases highly politicised, and suffer from a lack of technical, financial and infrastructural resources, which impedes the delivery of much-needed resources and services to those infected. In this chapter, we use the terms effectiveness and accountability from the
perspective of grassroots communities. Funds are effective when they get to the people, organisations and institutions that are providing sustainable, ongoing interventions to HIV and AIDS that are responsive to the immediate and long-term needs of communities. Structures are accountable when they are in communication with, open to and responsive to, the needs of those communities. The main findings of the chapter are drawn from the experiences of the Home-Based Care Alliance in Kenya. We have chosen to focus on Kenya for three reasons. The first is our desire to illustrate a limited, national example of how decision-making processes are functioning in the context of AIDS. Second, Kenya is a country that is undergoing a conscious movement to strengthen democracy following a long period of one-man rule. Third, we have in Kenya a powerful example of grassroots women organising for greater participation, and federating across communities and regions to build power and share and analyse the lessons. Civil society is generally recognized as one key part of a strong multi-stakeholder response to AIDS. Civil society in the form of a professional non-governmental organisation (NGO) is not necessarily well placed to build good governance or accountability, however, as those NGOs tend to be accountable to their board or
donors rather than the populations that they serve. Civil society organisations in this chapter refer to self-organised groups of citizens living and working in their own communities, in this case a group of home-based caregivers. Their efforts are aimed at building the capacity of their communities to participate in the structures that were designed to include them and to hold accountable the institutions and actors who are supposed to be accountable to them.
