Lim Hye Young Centre for Human Rights University of Pretoria South Africa

1. Lim Hye Young Centre for Human Rights University of Pretoria South Africa

2. Part 1. Getting to know each other • Part 2. Presentation • Part 3. Group work • Part 4. Feedback from groups

3. Setting the scene • Understanding CHBC • Views of carers and organisations • Understanding rights-based approaches • Six core principles • Practical implications of applying RBA • Human rights frameworks • Applying RBA and related rights • Recommendations • Challenges

9. Definition: the provision of health service by formal or informal caregivers in the home in order to promote, restore and maintain a person’s maximum level of comfort, function and health including care towards dignified death (National Guideline on HBC, SA, 2001) • Purpose: to provide hope through high quality and appropriate care that helps family caregivers and sick family members to maintain independence and achieve the best quality of life. (WHO, 1999)

10. Unavailability of hospital care services & health professionals • Inaccessibility of health care services • distance, immobility of patients • Un-affordability of hospital care facilities • cost of transportation, cost of care

11. General profile of home-based carers • Gender, age, education level of carers • Their work as home-based carers • Working hours, number of clients, nature of work • Concerns and challenges of carers • physical, psychological burn-out, financial challenges • Supports from organisations • Challenges of organisations

12. Voluntary home-based care providers are rights-holders. • Concept of voluntarism and civic service - Definition of voluntarism: contributions that individuals make as non-profit, non-wage, and non-career action for the well-being of their neighbours and the society at large. (UNV) - Definition of civic service: an organised period of substantial engagement and contribution to the local, national, or world community, recognized and valued by society, with minimal monetary cost to the participant’ (M A McBride et al, 2004)

13. RBA vs. NBA “clearly understanding the difference between a right and a need.” • A right is an entitlement. - A need is an aspiration. • A right can be enforced in courts. - Satisfaction of a need cannot be enforced. • Non-fulfilment of a right is a violation of law. - Non-fulfilment of a need is not a violation of law.

14. Universality and inalienability • Indivisibility, inter-dependence and inter-relatedness • Equality and non-discrimination • Participation and inclusion • Accountability and rule of law • Empowerment and entitlement

15. Universality and inalienability : Every human being, by virtue of being human, is entitled to their rights. Such rights are inalienable in that no one can take those rights away or voluntarily give them up. • Indivisibility, interdependence and inter-relatedness : Human rights are indivisible, interdependence and inter-related. Civil and political rights and socio-economic rights should be given equal importance.

16. Equality and non-discrimination : Principle of non-discrimination prohibits discrimination of any kind based on ‘race, colour, sex, ethnicity, age, language, religion, political or other opinion, national or social origin, disability, property, birth or other status’. The principle is also enshrined in constitutions. • Participation and inclusion : The right to participation is protected under articles 25(1) of the International Covenant on Civil and Political Rights as well as articles 21 and 27 of the Universal Declaration on Human Rights. The right to participation is understood as ‘the right to take part in the conduct of public affairs without discrimination and without unreasonable restrictions.’

17. Accountability and rule of law : Rights entail corresponding duties. Accountability means that states have an obligation to respect, promote, protect and fulfil the rights of the citizens. • Empowerment and entitlement : Empowerment is ‘the expansion of assets and capabilities of poor people to participate it, negotiate with, influence, control and hold accountable institutions that affect their lives.’

19. Right to non-discrimination - Equal remuneration for equal value of work • Right to equitable and satisfactory working condition - Safe and healthy working conditions - Rest, leisure and reasonable limitations of working hours

20. Right to health - Physical as well as mental health - Improvement of environmental and industrial hygiene - Prevention, treatment and control of epidemic, endemic, occupational and other diseases • Right to participation - Voluntary carers have the right to participate in decision-making processes within their organisation. - Voluntary carers have the right to participate in periodic evaluations and anonymous surveys on the workings of the organisations.

21. ‘Community-based care is not free of cost, and the effect on the lives of women should be calculated when such programmes are evaluated.’ Community-based organisations • should acknowledge that voluntary home-based carers are rights-holders. • Voluntary home-based carers have the right to receive an adequate and relevant training for their work. • Voluntary home-based carers should be empowered through basic education on human rights. • Voluntary home-based carers have the right to participate in decision-making process. Their views should be taken seriously and reflected in the outcome of the discussion. • Voluntary home-based carers should be provided with adequate supports, both material and psychological, necessary for successfully carrying out their work. • Organisations should carry out periodic evaluations of their project and the works of home-based care providers should be properly documented.

22. Governments • should provide legal and policy frameworks to protect rights of carers; • follow the Global Coalition on Women and AIDS recommendation to incorporate and budget for CHBC in their national strategic plan (the budget should include provisions for trainings and HBC Kit for carers); • Increase the financial support for carers; • should engage fully and sincerely with civil society to facilitate its meaningful participation in decision-making process.

23. South African experience: • Extended Public Works Programme (EPWP) - Creatingtemporary work and training opportunities for the unemployed using public sector expenditure. - Focus on areas that are labour intensive and require less skills, eg) infrastructure sector, environmental section, social sector (community-based health and social welfare care and early childhood development programmes), economic sector - Wage- not fixed but below the minimum wage

24. Share your experience: • What is the situation with regards to home-based carers in your country? • Is there a legal or policy framework to guide their working conditions or stipend? • Does your organisation provide home-based care? If so, how are home-based care are supported and managed in your organisation? • Let’s discuss: • See the case study • Let’s brainstorm: • What strategies can we adopt to encourage more male participation, while adhering to non-discrimination principle in HBC programmes? • If we were to draft a policy guideline on supporting and managing home-based carers, what provisions should be included? • Draft an advocacy paper- highlighting the importance of HBC in resource poor countries and human rights issues for voluntary home-based carers