Overview of the STOP AIDS Policy Briefing on caregiving and remuneration

Past due: Remuneration and social protection for caregivers in the context of HIV and AIDS Background: STOP AIDS Policy Briefing published in March 2012 Process was led by STOP AIDS Care and Support Working Group in collaboration with various member organisations. Produced with funding from DFID as part of a series of 4 briefs Brief has a varied audience wider than STOPAIDS members (although recommendations are also applicable to those NGOs working with caregivers). Other audiences are governments, donors and international institutions.

Past due: Remuneration and social protection for caregivers in the context of HIV and AIDS Purpose of the Policy Briefing: To provide insight into the significant role caregivers play. Particularly in scale-up of HIV and TB treatment and access to care and testing, but also to highlight their many other roles (e.g. psychosocial counselling, nutrition support, strengthening community systems). Highlight the need to recognise and compensate caregivers for their work to ensure sustainability, ensure better care for PLHIV and strengthen health systems more widely. Make recommendations to donors and decision-makers and align to policy context - community mobilisation and service delivery are central to UNAIDS Investment Framework (to accelerate global HIV response) and the WHO/UNAIDS Treatment 2.0 agenda (to accelerate treatment scale-up)

Past due: Remuneration and social protection for caregivers in the context of HIV and AIDS Key points of Policy Briefing 1. Who are caregivers? Primary caregivers: Adults and children (but most often older women) caring for family members in the home. Their work is hidden outside formal and informal economies and often do not receive the social protection they require to cover income lost. Secondary caregivers: Paid or volunteer community caregivers (majority women) either individuals or staff of organisations who visit homes to provide C&S to PLHIV and support to primary caregivers. There are many forms of remuneration or payment in-kind, but they remain largely inadequate to cover their needs.

Past due: Remuneration and social protection for caregivers in the context of HIV and AIDS 2. Social and economic considerations Economic costs of caring for someone living with HIV estimated to be twice as high as other diseases, placing heavy burden on primary caregivers. Secondary caregivers, whether paid or unpaid, often use their own limited funds to cover and transport and supplies costs for those they care for. Home-based care work is seen as low status and informal healthcare, as such caregivers are often mistreated and undervalued, impacting on their own health and well-being. Caregivers must be given the choice to be remunerated (volunteerism should always be an active choice) in line with human, women ’ s and labour rights standards. “ It is critical that volunteer caregivers are not made poorer by what they do ”

Past due: Remuneration and social protection for caregivers in the context of HIV and AIDS 3. The value and changing profile of caregiving Despite ongoing needs for caregiving to be recognised, caregivers have pride in their work, take personal satisfaction from helping others and many are driven by strong community spirit and religious conviction. Growing recognition of importance of community health workers to reduce pressure on medical professionals, such as WHO 2006 guidance (call for task-shifting approach) and WHO/Global Health Workforce Alliance 2010 study (strong case for incentives). But, both fall short. WHO/UNAIDS Treatment 2.0 agenda in 2010 identified the positive impact of community caregiving and community mobilisation.

Past due: Remuneration and social protection for caregivers in the context of HIV and AIDS 4. Models of compensation The forms of compensation provided to caregivers vary dramatically. Primary caregivers: Social protection – such as care grants and allowances, cash or food transfers, microcredit, IGAs, pensions. UNAIDS and C&S advocates believe considerations around cash transfers programmes must be broader to cover wider needs (e.g. predictable funding for social welfare ministries). Incentives – psychosocial support, training, access to equipment and other forms of support (secondary caregivers play an important role in provision of these)

Past due: Remuneration and social protection for caregivers in the context of HIV and AIDS Secondary caregivers: Incentives – Vary considerably and are often insufficient. Include training, supervision, equipment, uniforms, psychosocial support, transport support, reimbursement of out-of-pocket costs (those underlined should be considered critical components) Livelihoods support (volunteer/unpaid caregivers) – Limiting working hours to a maximum of 20 hours per week to enable people to pursue their own livelihoods activities. Career pathways (volunteer/unpaid caregivers) – Providing professional training and career progression opportunities to acquire skills they can be paid to do. Stipends – Small amounts of money paid either by NGOs or government. NGO funds often time-restricted under grants. Government stipends can be more sustainable but vary widely in coverage and level of funding and there are many pitfalls (e.g. government takeover of NGOs increasing bureaucracy, blocked involvement of key populations). Some governments (e.g. Malawi) have introduced salaries as part of community health workforce.

Past due: Remuneration and social protection for caregivers in the context of HIV and AIDS Secondary caregivers: Incentives – Vary considerably and are often insufficient. Include training, supervision, equipment, uniforms, psychosocial support, transport support, reimbursement of out-of-pocket costs (those underlined should be considered critical components) Livelihoods support (volunteer/unpaid caregivers) – Limiting working hours to a maximum of 20 hours per week to enable people to pursue their own livelihoods activities. Career pathways (volunteer/unpaid caregivers) – Providing professional training and career progression opportunities to acquire skills they can be paid to do. Stipends – Small amounts of money paid either by NGOs or government. NGO funds often time-restricted under grants. Government stipends can be more sustainable but vary widely in coverage and level of funding and there are many pitfalls (e.g. government takeover of NGOs increasing bureaucracy, blocked involvement of key populations). Some governments (e.g. Malawi) have introduced salaries as part of community health workforce.

Past due: Remuneration and social protection for caregivers in the context of HIV and AIDS 5. Value for money Evidence: Many studies demonstrate community C&S services and social protection are efficient and cost-effective. UNAIDS recognises this in both the Investment Framework and Treatment 2.0. BUT: Investment Framework cost calculations do not account for a full package of C&S or remuneration of caregivers. In-depth country level costing exercises will be critical to inform national/global policy and funding decisions. And ensure remuneration of caregivers is not left off the agenda! Investing in the future: Social protection and remuneration for caregivers are investments in strengthening wider health and community systems and make a critical contribution to quality of care and sustainability. How much will it cost? Studies are very limited, but recent Columbia University Earth Institute Study (requiring further scrutiny) suggests $2.3 billion per year is needed to cover remuneration of one million caregivers for a population of 500 million people in Africa. “ Unpaid work of caregivers should not be seen as a cost saving or programme efficiency during this protracted economic downturn ”

Past due: Remuneration and social protection for caregivers in the context of HIV and AIDS Key recommendations Governments, funders and programmers should recognise the contribution of primary and secondary caregivers, commit to conduct costing exercises, and include costs and strategies to remunerate them in budgets, programme plans and technical guidance (including those that target key affected populations). Governments, donors and NGOs must recognise community health workers with nationally recognised salaried roles in health systems, and until that is established, should provide a full package of incentives and support. Calls to specific organisations to fulfil their role with regard to remuneration and caregiving, namely the Global Fund, UN Women, WHO and the Global Health Workforce Alliance. Appropriate remuneration and social protection strategies must be designed in consultation with primary and secondary caregivers and PLHIV: Primary caregivers: Compensation should take the form of social protection Secondary caregiver: Remuneration should take the form of salaries

Past due: Remuneration and social protection for caregivers in the context of HIV and AIDS How the Policy Briefing has been used / received? The paper was disseminated widely within the civil society community and with DFID (paper sent to all DFID country offices). It was presented at a Treatment 2.0 conference in Zimbabwe. It was shared with the World Bank - it was well received and World Bank staff found it useful. You can access the Policy Briefing online here: STOPAIDS.org.uk/our-work/information-exchange/thematic groups/care-and-support /

“ A clear and time-bound path to remuneration is critical! ”