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Working with Children Affected by AIDS : Experience and Lessons

Working with Children Affected by AIDS : Experience and Lessons. Presentation at the USAID/FHI Implementing Partners’ Workshop on OVC and HIV/AIDS Dr. Balwant Singh India HIV/AIDS Alliance 17 th February 2004. International HIV/AIDS Alliance.

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Working with Children Affected by AIDS : Experience and Lessons

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  1. Working with Children Affected by AIDS : Experience and Lessons Presentation at the USAID/FHI Implementing Partners’ Workshop on OVC and HIV/AIDS Dr. Balwant Singh India HIV/AIDS Alliance 17th February 2004

  2. International HIV/AIDS Alliance • Worked with NGO/CBO partners in over 40 developing countries of Africa, Latin America, Asia and Eastern Europe since inception in 1993. • Supported over 1000 NGOs and community groups to implement over 1500 prevention, care and impact-mitigation projects. • An international development NGO focused specifically on HIV/AIDS, and serves as a Collaborating Centre of the Joint United Nations AIDS Programme (UNAIDS). Working with Children Affected by HIV/AIDS

  3. India HIV/AIDS AllianceStrategic Goals • To improve coverage of effective community focused AIDS efforts in India • To strengthen leadership and capacity of civil society to respond to AIDS in India • To improve institutional, organisational and policy environment for community AIDS responses in India Working with Children Affected by HIV/AIDS

  4. India HIV/AIDS Alliance • Supporting HIV/AIDS programmes in India since 1997 • Established as Country Office of the International HIV/AIDS Alliance in 1999 • Implementing integrated and comprehensive HIV/AIDS programmes: • mobilising communities in the provision of focussed prevention with key populations • home and community based care and support for People living with HIV/AIDS,families and children affected by AIDS Working with Children Affected by HIV/AIDS

  5. Home & Community BasedCare and Support Programmes • Supporting 40 NGOs in Tamil Nadu, Andhra Pradesh & Delhi since 2001. • Reaches 150 communities in 13 Districts in TN; 5 coastal districts in AP; and, urban and sub-urban areas in Delhi. • Reaches more than 5800 PLHA, approx. 8500 children affected by AIDS (CAA) and approx. 9000 family members affected by AIDS. Working with Children Affected by HIV/AIDS

  6. Support Services Provided • Psycho-social support to PLHA, and Children & Families affected by AIDS • Home visits & “hands-on care” programme for PLHA, CAA & Families affected by AIDS • Livelihood support • Nutritional education & support • Educational & other support for CAA & OVC • Medical care • Emergency support Working with Children Affected by HIV/AIDS

  7. Programme Strategies • Addressing issues relevant to CAA & other vulnerable children through ‘home & community based model’ • Ensuring involvement of children at all levels - participatory community assessment, participatory community review and programme design • Child-centred programming – direct involvement • Strong referrals and service linkages for improving access to services & addressing stigma and discrimination Working with Children Affected by HIV/AIDS

  8. Participatory Community Review with Children Working with Children Affected by HIV/AIDS

  9. Programme Innovations • Programming: • Strategic planning and participatory community assessments and reviews with children • Lead Partner model for technical support, capacity building, monitoring and scale up • Integrated programmes reaching out to PLHA, CAA & affected families, and addressing prevention, care and impact mitigation on the HIV/AIDS continuum • Integration: • Engaging community development NGOs • Involving youth groups/National Service Scheme volunteers in care and support in AP • Involving Self-Help Groups of women for supporting children Working with Children Affected by HIV/AIDS

  10. A Family Tree Drawn bya PLHA parent and child Source: VMM/World Bank Study on CAA in AP, 2003 Working with Children Affected by HIV/AIDS

  11. Programme Innovations (cont’d) • Community Models: • Community fostering - coastal Andhra Pradesh & Tamil Nadu • Community resource mobilisation – Tamil Nadu & Andhra Pradesh • Children’s support groups - AP • Child-centred counselling - Delhi • Policy and advocacy work with the Education Department and media on CAA issues - AP Working with Children Affected by HIV/AIDS

  12. Issues and Challenges • Child-centred approaches and programming: NGO capacity • Institutional Care vs Community Care • Predominance of emphasis on prevention • Psychosocial support needs of children • VCT for Children: Informed Consent, especially for children orphaned by AIDS & street children • Confidentiality: Status of children • ART & Children- Access, affordability, community preparedness & technical capacity • Education: Sex, sexuality & sexual health Working with Children Affected by HIV/AIDS

  13. Voices of Children* • "My father, mother and my brother require medicines. The school is far from the house. Moreover when there is work, my parents send me to the work. I like studying, but now I am used to the work and I am not preferring to continue studies.” • "We clear the debts of the family by working on daily wage basis. Though we are interested in studying it is not possible, as we have to work and earn.“ * PCA done in Coastal AP by NGOs in Coastal AP Working with Children Affected by HIV/AIDS

  14. Voices of Children* (cont’d) • “ We do not have food to eat or money to get medicines for my sick mother” • “I do not want to join in the hostel. I want to live only with my parents” • “My mother wants me to go to school regularly. You are providing us school fees. Why do you not (sensitise) my friends and teachers?” * PCA done in Coastal AP by NGOs in Coastal AP Working with Children Affected by HIV/AIDS

  15. CAA/OVC study in AP*:Key Findings • 37% of the 1,977 CAA interviewed had lost both parents; 18% had lost their mother; and, 18% their father • CAA who are not orphans - 59% both parents +ve • 15% dropped out of school & 11% started working to support their family * Study conducted by Vasavya Mahila Mandali on the Care and support projects in Coastal AP, on behalf of World Bank in 2003. Working with Children Affected by HIV/AIDS

  16. Lessons • An integrated approach helps to respond to diverse care and support needs of PLHA, children & affected families in locally appropriate & cost effective ways • Capacity building of NGO staff & volunteers is important to have ethically appropriate & value-based interventions for care and support especially of children affected by AIDS • Mainstreaming care and support needs of PLHA, CAA & families helps to overcome prevailing stigma & discrimination Working with Children Affected by HIV/AIDS

  17. Lessons (cont’d) • Important to differentiate and address the specific needs of CAA from those of adults with HIV/AIDS or affected by AIDS • Children require psychological, social & emotional support in addition to having their basic needs met - such support is most effective when provided in environments they are familiar with and where their relatives and friends live • Children too can and should participate, and take decisions on matters affecting their lives! • Involvement of PLHA & Children affected by AIDS is essential for successful interventions and programmes Working with Children Affected by HIV/AIDS

  18. Working with OVC/Children:Key Principles & Values • Respect and protect confidentiality • Children have their ‘likes’ & ‘dislikes’ and so need to be understood • Equal treatment and non-discrimination • Children have their own curiosities and aspirations, and need inspiration & guidance • Children’s self-esteem is very important and fragile – they need care & nurturing • Children have emotional needs which need to be understood and met • Children have rights and these need to be upheld Working with Children Affected by HIV/AIDS

  19. India HIV/AIDS AllianceOVC Priorities for 2004 & beyond • Develop & strengthen child-centred programme framework incorporating rights-based approaches and participatory methodologies • Skills building for our Lead Partners and implementing NGOs • Child rights & rights-based approaches • Child-centred programming • Participatory methodologies for involving children • Psychosocial support for CAA and other vulnerable children • Child-centred policy review with our Lead Partner in Delhi • Fostering integration and community ownership • Promote sustainability by further enhancing linkages with Government and other service providers Working with Children Affected by HIV/AIDS

  20. Next Steps • Establish an OVC/Children & HIV/AIDS Forum as an outcome of this workshop • Promote children’s involvement as central element • Agree agenda and priorities with children • Monitor progress with children • Identify & document good practice in OVC work and disseminate widely through networks of NGOs, CBOs & community groups • Foster collaboration amongst NGOs/CBOs working on HIV/AIDS and those working with children and on children’s issues • Promote children’s involvement in all OVC programmes e.g. assessment, planning, review, peer education, volunteering, etc. Working with Children Affected by HIV/AIDS

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