“When caregivers are involved in decision-making, whole communities benefit”

One of the original aims for this research process was to contribute to a body of knowledge and build a platform of actors to gain concrete recognition for home-based caregivers. The research began with the base of established constituencies of home-based caregivers and their NGO partners. The partici- pating organizations were able to leverage their combined strength and the new knowledge and con- tacts generated through this research to take advantage of new and on-going policy and program de- velopments, such as AIDS strategic planning and the reformulation of primary health care plans.

Since the original publication of this report in July 2010, caregivers have made concrete gains. Here are a few of their achievements:

Members of the Kenya Home-based Care Alliance, facilitated by GROOTS Kenya, have participated in the NACC Kenya National AIDS Strategic Planning and implementation pro- cess. Caregivers in multiple regions of Kenya are now receiv- ing funding from Constituency and District AIDS Control Councils. In addition, caregivers are now participating in the Community Health Workers Interagency Coordinating Com- mittee to ensure its work reflects and builds upon the reality of communities.

In Uganda, caregivers working with UCOBAC have participated in the Health Sector Strategic Planning III, leading to the selection of committed home-based caregivers for newly formed Village Health Teams. Caregivers are also now participating in local agricultural committees and saving and credit cooperative societies, making it easier for funds and services to reach the poor in communities.

200 caregivers have been registered into the mutual health scheme and comprehensive home based care is being integrated into primary health piloted by the Home Based Care Alliance. When caregivers are involved in decision-making and development projects in this way, whole communities benefit as access to treatment, prevention, care and support is scaled up. These new kinds of partnerships are making global and national AIDS and health initiatives effective for communities, where they are meant to have their impact. They demonstrate the power of partnering with grassroots women’s organizations that are leading change in their communities.

Eight years since the founding of the Home-Based Care Alliance (HBCA) in Kenya, HCBA groups across twelve countries are thriving and experiencing high levels of success. As of the summer of 2011, there are approximately a total of 24, 648 registered caregivers. A recent exercise base-lining the current state of organizing in the Alliance reveals that most of the groups have a strong foundation of close to or over 1000 caregivers, who are actively involved in their communities and working tirelessly in improving the lives of people living with HIV/AIDS and advocating for their well-being.  Each community, mostly in rural settings, has been diligent in taking steps to build the Alliance from the bottom up.  They start by creating and implementing a mapping process in order to identify all caregivers in their community, and have set up a database of all the caregivers. .  This ensures transparency and gives way to a comprehensive system in which all caregivers are accounted for.

Organizational formation varies based on local context, but generally groups are structured from the ground up, starting with the home-based care group/caregiver cluster (usually of about 20 people). Each of these groups nominate 1-3 representatives for a district or divisional Alliance, and moving up to the national level. In Uganda, a strong grassroots board of caregivers representing the various regions serves as the decision making and planning body for the Alliance.  In Malawi, current structure consists of a taskforce, which oversees three districts committees.  They in turn manage and coordinate the Alliance.  Benin, on the other hand, has at least 25 leaders of various types.  These include, local authorities, health center managers, and NGOs, which organize women providing home-based care.  Thus, in order for Lambassa ICA (the support NGO in Benin) to facilitate their work, a network of people living with HIV/AIDS has been created, which allows all members to participate in organized activities and engage in peer exchanges.

Solid networking and linkages are the strongholds and foundations for the Alliances, which allows for access to national and international information about health initiatives that is vital for Alliances to make an impact on advocacy.  GROOTS Kenya has made significant gains in advancing the position of home-based caregivers and has proven to be an effective model for other countries.  The International Women’s Communication Center (IWCC) in Nigeria serves as a connection between the international network of women’s rights and development organizations to the Nigerian women at the grassroots level.  They have established homecare, and organize annual women institute training centers in twelve local authorities in the country.  In Rwanda, the Rwandan Women’s Network (RWN) facilitates activities and provides capacity building workshops for people who are already working as caregivers.  Moreover, RWN’s partnership with the Department of International Development in the UK includes working with caregivers who provide care and support for genocide survivors who contracted HIV/AIDS as a result of sexual violence.  RWN’s caregivers also partner and collaborate with local NGOs and with local government, which helps caregivers to be regarded as advocates and allies within their respective communities.

HCBA’s all across are engaging in vital and ongoing activities that respond to the needs of the communities.  In Ethiopia, for example, a consultative workshop was held by SHAFON in February 2011 in Hawassa.  Additionally, communities on both a regional and international level participate in peer exchanges, which strengthens the Alliances and fosters advocacy by allowing for sharing of achievements and challenges.  Rwanda’s group has been active in working with local clinics and doctors to provide referrals and clinical trainings for caregivers.  Moreover, their partnership with USAID runs the Community HIV and AIDS Mobilization Project (CHAMP).  This project also collaborates with the Rwandan Ministry of Health to train community health workers.  Other groups, such as the Grassroots Sisterhood Foundation in Ghana, besides being committed in HIV/AIDS awareness advocacy and the Home-Based Care Alliance, activities also revolve around issues of domestic violence, early marriages, land, and property and inheritance rights.