“We are not an add-on to adults. Our problems deserve as much attention as those of the adults”, children whose lives have been impacted by HIV/AIDS one way or another said here in their first ever national statement. The statement was the outcome of a national consultation in which children affected by HIV/AIDS spelt out their expectations from the Government and from the society in great detail.
This consultation which ender in Manesar, near Delhi on May 28, was organized by Positive Women Network (PWN+) in partnership with UNICEF. This deliberation with affected children was a follow up the national consultation held last year by the MiniThe consultation brought together 53 children (27 girls & 26 boys) from ten states across the country namely, Maharashtra, Gujarat, Nagaland, Andhra Pradesh, Orissa, Rajasthan, Kerala, Karnataka, Tamilnadu and Manipur.stry (then Department) of Women and Child Development, Ministry of Social Justice and Empowerment and the National AIDS Control Organization (NACO) with support from UNICEF. Two state consultations preceded this.
The consultation was unique because it was affected children who spoke. It was timely because children spoke at a time when the government was finalizing the third phase of the National AIDS Control Programme (NACP III).
The youngest participant was 9 years old, the oldest 15.
In the five days of Joy ‘N’ Joy consultation the children discussed their dreams, achievements, issues, problems and solutions for their problems. Children spoke their mind on social isolation, being orphaned, denial of services, access to education, emotional distress and their dreams and aspirations for the future.
While recognizing that NACP III has provided for the prevention, treatment, care and support for children including provision of ARV to 39,000 children living with HIV, the facilitators of the consultation worked on eliciting information from children on prevention, care, protection and support within their context and on the basis of their experiences. (see Affected Children’s manifesto)
A group of 6 facilitators, many of them belonging to the positive women’s network, specially trained in child participation techniques and skills on working with children ensured that the “Joy N Joy” consultation was a memorable experience for each child and a rewarding exercise for policy makers and programme implementers.
On the last day, the children presented the outcome of their three day long deliberations in the form of role plays to invitees from NGOs and Government Departments. They also presented the conclusions of their deliberations to Dr Dharmashaktu, the Additional Project Director, NACO (National AIDS Control Programme).
Responding to the children Dr. Dharmasakhtu, said that the Government was working with the pharmaceuticals industry on paediatric formulations. The government, he said, was also committed to making AIDS medication available at the district level. He appealed to the positive networks and other voluntary and civil society organizations to join the Government in making more district specific initiatives for the betterment of the lives of HIV infected and affected children. He welcomed the idea of children affected by HIV/AIDS (CAHA) forming their own networks in conjunction with positive women’s networks.
He also recognized the need for training of service providers. “Unless we train our hospital staff, child counselors, we cannot attain a child friendly atmosphere nor cleanliness in the hospitals. Training is required both for government personnel and those working with the private sector , NGOs, network staff and volunteers".