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

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• 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).

International HIV/AIDS Alliance

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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

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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

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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.

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• Psycho-social support to PLHA, and Children & Psycho-social support to PLHA, and Children & Families affected by AIDSFamilies affected by AIDS

• Home visits & “hands-on care” programme for PLHA, Home visits & “hands-on care” programme for PLHA,

CAA & Families affected by AIDSCAA & Families affected by AIDS

• Livelihood supportLivelihood support

• Nutritional education & supportNutritional education & support

• Educational & other support for CAA & OVCEducational & other support for CAA & OVC

• Medical careMedical care

• Emergency supportEmergency support

Support Services Provided

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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

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Participatory Community Review with Children

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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

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A Family Tree Drawn bya PLHA parent and child

Source: VMM/World Bank Study on CAA in AP, 2003

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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

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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

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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

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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

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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.

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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

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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

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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

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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

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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.