CHILDREN – AIDS COMPETENT COMMUNITIES CHILDREN’S SECTOR NATIONAL SUMMIT DURBAN 20 November 2009

CHILDREN – and the REALITY! Our children’s stories and reality cries out for redress! Our response must be based on a passion for the unique human being which is this vulnerable child Their fundamental right – to holistic care which opens a door to a journey towards the best quality of life we can provide Involves palliative care, all round health care, the provision of schooling and after-school accompaniment.......but also... A focus on the emotional and spiritual needs of the growing child – so.....providing psycho-social-spiritual support which requires a network of agents and community groups Faith –based sector too must partner with the entire network – to provide sustainable holistic care and accompaniment

HOW TO ACHIEVE THIS? Creating “Aids competent communities” Policy making and coordination of all sectors – crucial – but also Strengthening Aids competence in individuals and civil society groupings – through training and formation, ongoing support Goal of such training – to enable and equip individuals and whole communities to respond holistically to the needs of children infected or affected by HIV, children who are vulnerable...and to sustain this Calling forth the many diverse cultural values in communities, e.g. using proverbs which can inspire..... “Your child is OUR child” “Motho ke motho ka ba bangwe” .......... And a spirituality of care which enables the carer to truly “walk on sacred ground” in the presence of a child, to touch in every way the unique mystery of this “little one”.........so that..... There can be healing, the beginning of growth, a hope for a future.......

THE CHALLENGES Stigma, discrimination , alienation of the vulnerable....... How to bring whole communities to recognise and take to heart that the vulnerable “little ones” are truly “ours”......and that..... Only we – working together - can make the real difference...so... Wholesome cooperation and collaboration between the State health sector/clinics and community-centered programmes, and community care givers......advocacy coming from real experience Also.....Business/Corporations/NGOs – truly partnering with trained and supervised community care workers Funding for training.......funding support for community child-care workers, the issue of “volunteers” and “payment” Sustainability of programmes – like PMTCT - for many years still

GOVERNMENT – CIVIL SOCIETY National-level leadership and coordination – indispensable for creating sustainable strategies/outcomes which transform the reality of children SANAC – Government departments – Province AIDS Councils – NGOs – Civil Society representatives......yes! Achievable at national level – but the challenge......? How to bring the same level of leadership and effective, sustainable implementation at local level My experience – not easy to develop mutually respectful and effective partnerships at local level, e.g. with Government hospitals and local rural clinics Personality differences, human failures like jealousy at the so-called “success” of a particular programme, “blocking” of good community-based programmes by local councillors+local government, etc.....and.. Lack of human and financial resources....and coordination at local level to provide the supervision and maintenance of programmes

COMMUNITY CARE GIVERS Their gift and strength – they are from the communities, have an intimate knowledge of all that affects the child, especially the social and emotional realities Need initial and ongoing training and formation – but also supervision/support from trained coordinators and social workers..... Social workers very hard to find for the civil society sector.....great shortage even in the State sector Commitment has to be sustained...therefore, motivational values to continually inspire their personal response, respect, love, compassion......faith-based sector can play its part here..... The challenge in communities is so great!......so Government, Business, NGOs, civil society groups must truly partner with CCGs Government and Business sectors must provide financial resources to enable CCGs to live with an adequate security – a problem or a challenge?

HOSPITALS – CLINICS - CCGs My experience – State hospital personnel have an inadequate idea of the importance of “palliative care” for people esp. with advanced HIV.....including children..... Control of pain and holistic medical care, plus good psycho-social-spiritual support of the person and their context (palliative care), is crucial if people and children are to die in peace and dignity Inadequate coordination between State hospitals, local clinics and the care givers....for example....... ARVs given at hospital.....who follows up that patient in the village or informal settlement?......must be local CCGs with clinics....but does this happen in an effective way? Local clinics sometimes very under-resourced, even in basic medicines for infection control; cannot support CCGs

BEACONS OF HOPE? Good + effective child-care training programmes offered by organisations like Heartbeat and others Many local community care programmes which enable individuals from communities to respond creatively to the actual needs of their children, e.g. Noah and others Partnerships between community programmes like Tapologo and the Impala Bafokeng Trust and Royal Bafokeng Administration...management, finance.... My unshakeable belief that our greatest treasure and asset in South Africa is the gift of our people who know what needs to be done, and who care enough to make it happen Policy-makers and the whole Network – make it happen!