DECENTRALIZATION OF CARE A COMMUNITY HOME BASED CARE

DECENTRALIZATION OF CARE A COMMUNITY HOME BASED CARE PERSPECTIVE Presentation at Marga Klompe symposium , Tilburg University Netherlands 16 th November 2012 Derrick Mweemba Assistant National Health Coordinator Zambia Episcopal Conference

EVOLUTION OF CARE GIVING IN ZAMBIA The history and evolutionary course of caregiving in Zambia recognizes the wider policy and structural Health reform process from the late 1970 s to 1990 s. The Alma Ata Declaration of 1978 provided the impetus and direction for the Zambian government to make primary health care the key channel for the delivery of health services.

Cont… • Community participation was already a key feature of the Zambian health system as demonstrated by 30% of the rural facilities being developed on self-help basis and the existing policies at that time of free medical services (Kasonde, J. , Martin, J. , 1994). • Due to some health system management challenges, reform processes took place under the Medical Services Act of 1985, resulting in semi -autonomous Hospital Management Boards for all major Hospitals (Raken, J. P. , 2004).

Cont. . • The Medical Services Act of 1985 was subsequently repealed and replaced by the National Health Services Act, which came into operation on March 2, 1996. • The new Act established the Central Board of Health (CBOH) (Melle, L. , 2012). CBOH was designed to monitor, integrate, and coordinate the programs of the Health Management Boards, whereas the Ministry of Health (Mo. H) was now a policy-making and regulatory body (Bossert, et. al. 2000; Foltz, 1997). • Thus, the reorganized health delivery system was now based on four levels with the Mo. H at the apex and the lowest level being the health centers/health post.

Cont… • In the midst of above complex policy reforms related to care giving, communities in Zambia were playing a key role in the delivery of health services. • In the Zambian cultural context, nuclear and extended family always unite in support of people with illness. Hence, as HIV developed into AIDS in the 1990 s, family members cared for most patients in homes (Illife, J. , 2006).

Cont. . In 1987, medical workers in Zambia made first attempts to reach those dying of AIDS in their homes. This hospital-based home care model, pioneered by Salvation Army in the southern part of the country to care for tuberculosis (TB) and Leprosy patients, was extended to People Living with HIV&AIDS (PLHIV/AIDS) (Iliffe 2006) due to insufficient hospital bed spaces for the growing number of AIDS patients (Malama, M. , 1994; Myslik et al 1997).

Cont… • Between 1988 and 1990, the Catholic Church and Chaikankata Hospital of the Salvation Army established large home-based care programmes. • By 1993, about 30 Mission hospitals were providing Hospital-Based Home Care to PLHIV/AIDS. Due to swelling costs associated with travel and time, travelling clinical health workers were supplemented, in some cases even replaced, by trained ‘lay’ people based in the community.

Cont… According to the Zambia National Minimum Standards for Community and Home-Based Care Organizations (2007), the community and homebased care movement in Zambia evolved, primarily as a faith-based response to care for the chronically ill.

Policy and Guidelines The Sixth National Development Plan (SNDP) provides the overall framework for all Government’s Social and Development efforts and lists four key health priorities in the area of HIV and AIDS. Among these priorities listed is a focus on accelerating universal access to ART and Care and Support for PLHIV, their Caregivers, and families.

Policy and Guidelines Community care and support is recognised within the National AIDS Strategic Framework as an integral component of the continuum of care particularly in the context of ART. As recent as 2005, the NAC and Mo. H in partnership with other actors in the HBC Forum, recognized the need for standards for HBC. Through collaborative efforts, the Zambia National Minimum Standards for Community and Home Based Care was launched in 2007 by National AIDS Council and Ministry of Health.

SUMMARY The Ministry of Health has done well in the area of decentralizing care. The Policy framework and Guidelines in place provide for a conducive environment for various actors to provide cares. Local and international NGOs and Faith based organizations have flourished without hindrance though with challenges.

NATIONAL COMMUNITY HOME BASED CARE ALLIANCE The formation of the National Community Home Based Care Alliance is as a result of the Home Based Care Situation analysis (Scan) conducted with support from CORDAID and the recommendation of the subsequent follow up Home Based Care experts meeting held in June 2010.

Background Cont… The goal of the Experts Meeting on CHBC was to bring together Zambian HBC experts and stakeholders from Government, NGO, CBO, beneficiaries, and Donor agencies to discuss the main findings of HBC situation analysis, brainstorm its status, challenges and future.

KEY FINDINGS • Lack of caregivers coordination body (Alliance). This has resulted in poor coordination of care givers and as such, there is no strong voice for the Caregivers and recognition for the wonderful work they do under HBC. • There was duplication of efforts in CHBC due to poor coordination at various levels • Pediatric HBC: -There were no standard Identification criteria for pediatric AIDS and volunteers and staff lacked technical capacity to manage the HIV positive babies at home.

Findings cont… • There was Lack of standardized packages of Home Based Care for CHBC providers and Care Givers despite having the minimum standards for HBC as provided for by the Ministry of Health. • There were no Standardized Incentives for care givers • There was poor referral system between Community HBC programs and Health facilities. This resulted in poor or no feedback from Health facilities. • There was still a big gap in addressing the needs of asymptomatic HIV positive clients

Findings Cont… • The CHBC experts felt that HBC organizations were still operating in a parallel system and government’s expectations were not adequately met. • There was lack of quality assurance mechanism and monitoring system. Community HBC actors, therefore, operated on their own with limited or no supervision at all. Accountability was often seen as accountability only to the funding partners.

KEY FOCUS AREAS OF CHBC ALLIANCE • To re-define Home Based Care under the Current situation of ART in Zambia. • To re-define Home Based Care components and focus areas as a matter of urgency to respond to the emerging needs of Prevention, Treatment, Care and Support. • To re-define the role of Caregivers in Home Based Care under the current situation of ART in Zambia • To advocate for recognition and appreciation of HBC Caregiver and the work that they do • To Lobby Government and Donors to continue to fund Community Home Based Care. • Review and update the Data Base for CHBC providers in Zambia in Liaison with NAC and MOH.

Cont… • Review and up-date Home Based Care Guidelines in liaison with Ministry of Health • Harmonize and Standardize M&E Tools and systems at all levels of CHBC service provision. • Standardize Training Manuals for Caregivers to incorporate Palliative Care and Pediatrics HBC. • Promote Documentation and replication of best practices in CHBC in Zambia • To strengthen linkages between CHBC, DHMT’s and Health Institutions in all districts

Contd… • Promote Male involvement in CHBC • Lobby Ministry of Health for accelerated ART services • Lobby Key Stakeholder such as Ministry of Health, National AIDS Council, Palliative Care Association of Zambia and CHAZ to support the work of the Alliance • Facilitate formation of Caregiver Alliance.

OUR IMMEDIATE PLANS • To Lobby Donors for funds for the operation of the Alliance • To strengthen the functioning of the CHBC Alliance • To develop Operational Guidelines (Constitution) for the Alliance • To Develop Joint Strategic Framework, Monitoring and Evaluation Framework, Annual Work-plans, and Resource Mobilization Plan. • To continue to lobby Government to recognize the role Community Caregivers play in realizing the vision of the Government which aims at bringing Equitable Health Care Services as close to the family as possible

Contd… • To strengthen links between community structures such as community neighborhood health Committees and the District Health Management Teams who oversee health care services in the districts. • These community structures are key to the well functioning of the ministry of Health and Community Based Organizations.

ORGANIZATIONS THAT MAKE UP THE ALLIANCE • • Zambia Episcopal Conference (ZEC) National AIDS Council (NAC) Churches Health Association of Zambia (CHAZ) The Salvation Army STEPS OVC (Catholic Resource Services) World Vision Zambia (WVI) Ministry of Health (Mo. H)

Contd… • People’s Process on Housing and Poverty in Zambia (PPHPZ) • Council Of Churches in Zambia (CCZ) • Evangelical Fellowship of Zambia (EFZ) • Zambia Interfaith Networking Group on HIV/AIDS in Zambia (ZINGO) • Zambia Homeless and Poor People’s Federation (ZHPPF) • Network of People Living with HIV (NZP+) • True Vine Community Home Based Care

Contd… Titandizane Community Home Based Care Good Samaritan community Home Based Care Just to mention a few.

CHALLENGES – CHBC ALLIANCE Lack of funding to enable us develop key operational documents to guide the Alliance Bureaucracy in some of the government Ministries and departments Lack of commitment in some lower level structures of government in implementing recommendations from civil society organizations.

Challenges cont… No standardized incentives for Caregivers No voice and platform to showcase what they do Usually caregivers have little or no in-put in program design Client/Caregiver ratio is high resulting in most Caregivers doing a lot more work than others. Caregivers are themselves vulnerable requiring support

Cont… International NGOs are concentrated in urban and peri-urban areas leaving the rural population under served. Duplication of efforts – usually several NGOs would be doing same activities within the same catchment area. Double counting of clients. Certain NGOs feel they have no obligation to report to NAC or Mo. H on what they are doing

Way forward The CHBC Alliance shall endeavor to lobby Government to recognize Caregivers as an integral part of the Health Delivery system in Zambia and as such include them in the mainstream Health Care System. Government acknowledges the role of Caregivers in the HIV response but demands that caregivers be trained in a standard curriculum and be accredited to a recognized body. As an Alliance, we shall endeavor to align our work to standards set by Government.

Way forward cont… The Alliance shall come up with a regulatory framework which shall be used to regulate its work. Currently the Alliance is being guided by HBC Minimum standards set by the Government. The Alliance shall facilitate Caregivers meetings as a platform to share experiences and learn from each other. Guidelines on how caregivers’ meetings will be conducted have already been developed

Way forward cont… The alliance shall work hard to strengthen community structures such as community neighborhood Health committees, Community social Welfare committees and linkages with government to bring Health Care as close to the Households as possible. A series of meetings with Mo. H have been held with Mo. H promising to write to Provincial and District Health Offices to work with the Alliance. This needs to be followed up and strengthened.

Thank you for listening Asante sana Dzikomo Tatenda