Case studies

These case studies have been collected as part of knowledge management function of the USAID funded Orphans & Vulnerable Children Social Protection Project. Through these case studies it is our effort to throw light on the different socio-cultural and medico-psychological issues that children infected and affected by HIV or AIDS face and the many project led interventions and best practices that improved their situation.

I. Access to government schemes made easy for children affected by AIDS

OVC Social Protection Project -District AIDS Control Prevention Unit exemplary coordination to hold the 'Single Window System' within the ART Center at Solapur Civil Hospital in Maharashtra

A child infected with HIV seen here in her home with her positive mother, Solapur, Maharashtra

Children affected and infected by AIDS, and their families, either consisting of PLHIV parents or next of kith and kin who may be looking after them after either or both parent’s death, are highly vulnerable, needful of support and entitled to all government facilities and schemes.

However, accessing government schemes that are available for their social protection is very difficult for the families of CLHIV/CABA. The families might not have awareness of the different benefits they are entitled to and if they do get the information, it is not easy running from one department to another to submit applications and fulfill the formalities, spending their time, money on travel and effort. Besides there is always the ever present issue of stigma and discrimination looming large at these many places they have to visit in the process.

The District AIDS Prevention Control Unit(DAPCU) Single Window System is a unique solution which is aimed to simplify the process of applying for different government social welfare schemes for People Living with HIV/AIDS, Children Infected and Affected by HIV/AIDS and Most At Risk Populations whereby individuals can apply for any/different schemes here without having to go to different government departments.

In Solapur district of Maharashtra, the District Program Officer in DAPCU, Mr. Bhagwan Bhusari exhibited exemplary personal interest, unwavering pursuit and strategy to get an office space authorized for the OVC Social Protection Project within the ART Centre against government protocols and rules in Solapur Civil hospital to implement the Single Window System and increase access to government schemes by children affected by AIDS and their families. This was an outcome of the OVC project district team’s advocacy efforts with the DAPCU officials. The presence of the Single Window System point office in the ART Centre is aimed to increase access to the government welfare schemes by children infected or affected by HIV/AIDS and their families who visit the ART centre. Now all the these children and their families coming to the ART centre go directly to this DAPCU Single Window System Office to learn about the different schemes and apply for it.

This is a unique and effective model of combining medical and social services being given in a hospital made possible by exemplary coordination between the OVC Social Protection Project (NGO) and DAPCU(government).

The District Program Officer says, ‘ I made efforts out of my role after assessing the nutritional state of CABA in the district. Besides education is a growing concern that DAPCU is trying to address through the Single Window System.’

One good work leads to another and so it is with this case. Seeing the good work the OVC Project is now doing on increasing access to government schemes for CABA and families, the Medical Officer, Dr. Sunita Gaikwad, ART Centre is advocating for relaxation of documentation requirements at the time of scheme sanction for People Living with HIV/AIDS and Children Affected by AIDS.

The effort to bring government benefits to Children Affected by AIDS and their families through various schemes is heightened by the presence of the OVC Project implementing Single Window System within the ART Centre, Solapur Civil Hospital.

II. ' Choti Si Asha': Little Hope
Family crisis on the death of one of the parent due to AIDS , displacement, abuse by kith and kin, early debut into work and the respite from the intervention from the OVC Social Protection Project for a 20 year old girl.

“Despite abuse, my spirit is intact. My focus is on my future which I am sure will be bright”.

As the title says, Asha is small built and looks too young to be her real age which is 20. She is a new inmate for Palawi. She hails from Solapur and was referred to Palawi a few days ago by the District AIDS Prevention & Control Unit(DAPCU) 'Single Window Program' and the Orphans & Vulnerable Children Social Protection Project District Program Coordinator, Mr. Shrikant Gaikwad. She says so far she is happy and feels at home here.

Looking back at her origins, her parents belonged to Kumte Thanda near to Solapur. They belong to Sikh community and seem to have migrated from Punjab. Her father tested positive and her mother left him and went to live with her parents when Asha was a baby. Her mother did not visit her father even when he was sick or when he died. Later the paternal grandparents asked her mother to return with Asha and live with them. She declined and told them to keep Asha with them. Thus, Asha was cared for by her paternal grandparents. 

When she completed her 6^th standard, during the holidays her aunt (father’s sister) insisted that she will take Asha with her and care of her further studies. With hopeful eyes Asha followed her aunt who lived somewhere near Satara. When holidays got over and it was time to return to school, there were no signs of going back to school. When Asha inquired about it, her aunt said, you are grown up now and no need of school. She was then sent to work in construction site for about a year and do help around the house. Her earnings were taken and used by her aunt.

Later she found a job in a brewery as assisting in bottling. She had to just stand and press a button and ensure things are moving smoothly. She has a pleasant experience of work in that place. She had good support and valued as a good worker. She also made friends with two other girls who worked with her. She says that part of her job was very satisfying for her. However, things at home had not changed; oftentimes she would be going to work hungry and had to do all the housework at her aunt’s house. Her salary was handed over to her aunt and she would give her some money when she had to visit ART centre.

She was getting frustrated with her situation. Not sure if something happens to her aunt, where would she go, she is earning and giving it all to aunt and hence had no savings. She lost her grandfather who was the most concerned about her a month ago.

The incident that triggered drastic action and change in her life occurred about 10 days ago. When she was eating food, she scolded her aunt’s grandchild for some misbehavior saying “If you don’t eat quietly I will slap you”, for which her aunt got up and beat her up. She felt very upset and thought of committing suicide. At the same time she thought of her grandparents efforts in bringing her up and keeping her alive so far, she did not want to give it all up.  She decided to leave that place at ones and come to ART centre and seek help as she knew many staff over there. The next day morning she came to Solapur ART and narrated her situation to Vihaan counselor saying she would not like to go back to her aunt’s place.

Vihaan counselor referred her to Single Window Program staff and Orphans & Vulnerable Children Social Protection project District Project Coordinator for Solapur, Mr. Shrikant Gaikwad. After listening to her situation, he suggested that she can go back to her grandparents place and in the meantime something will be done. Shrikant got in touch with Palawi and got their approval to send her there. The girl was informed to go to Palawi with some family member. She one by one requested all her uncles to accompany her but none agreed. Finally one of the uncles (father’s brother) agreed to drop her at Palawi and now for the last 4 days she is living in the centre.

Looking at the future, she says she is confident that she will find a good future and good things will happen to her. She is very articulate and has good thinking. She is confident that the factory where she worked will definitely take her back but she has no accommodation in that place which is a challenge. She was also not getting any Provident Fund there so she has no savings left in her hands. She is ready to take her next steps with the guidance of Orphans & Vulnerable Children Project and Palawi centre.

She says “We have to be samajdaar (tactful/ understanding) in these kinds of situations, your samjdaari can only help you”. 

III. ' You will win! '
The story of a child sports champion who advocates for a winning attitude among HIV infected children, talks about how the institution cushioned him and his aspirations.

Babu before heading for International Children's Games 2015 in Netherlands

Alkmaar, the city in Netherlands known all over the world for its cheese, is the venue for International Children’s Games (ICG) popularly known as Children’s Olympics. In a matter of few days, it will begin to receive youth sports champions from different corners of the globe where children from cities around the world between the ages of 12 and 15 will participate in a variety of sports and cultural activities between June 24-29,2015.

One such youth champion heading for Netherlands is Babu Seenappa who hails from a small village in Hoskote taluk from Karnataka state in India. 14, male and a marathon runner, there are two things that are most striking about Babu. The first is the conviction he carries in his gait as he prepares to participate in the 1500 m event at Netherlands. And the second is the fact that he was born with HIV and orphaned at an early age. For the first time in the history of Children’s Olympics two HIV positive children are participating, Babu being one of them.

Babu has taken part in several competitions at the Karnataka state level, running 5k and 10 k events including the Kaveri Trail Marathon, the Bangalore Wellness Run, the Auroville Marathon and most recently the TCS run on May 17, 2015. In the Auroville Marathon he completed 10k in just 37 minutes and finished second.

‘There is something poking me from behind saying- you will win, you will win, you will win! I don’t know if it is my conscience or God talking to me, I only know I will run as if there is no tomorrow. And I will win.’-Babu

As he practices and prepares for his international sports debut, Babu shares his inner thoughts-‘I might be nervous at the start of all the races that I have participated in but after the first few seconds I just shoot out and this comes from the belief that I will do good.’

From where does this belief to excel and overcome challenges come from? What are the issues of children infected and affected with HIV in India and what are the solutions? What does the journey from HIV, stigma and discrimination to becoming a sports champion look like?

Babu’s parents died when he was just six and his aunt brought him in the year 2008 to Sneha Home Care, a residential facility in Sarjapur, Bangalore run by Sneha Charitable Trust (SCT) for HIV infected children. He has spent eight years in Sneha Care Home and now lives in Snehagram, Krishnagiri in Tamil Nadu, a residential facility for children above the age of 14 run by the same trust.

Sneha Care Home and Snehagram together have cushioned the hardship-filled lives of vulnerable children who are infected and affected by HIV/AIDS- either they are left orphaned by parents who died of HIV/AIDS and/or are HIV positive themselves. Snehagram mentors these children to excel in academics, sports and other extra- curricular activities, imparts life skills and vocational training and builds leadership skills besides laying emphasis on their nutrition, health and ART adherence. It gives them avenues to achieve good health while giving them the infrastructure and support to realize their life aspirations and think beyond just HIV.

Children who are HIV positive face acute stigma and discrimination within their families and community especially when they are left orphaned and have no one to protect them. Lack of knowledge of their HIV status also aggravates their health condition as early detection of the disease and early treatment are delayed. Nutrition and ART adherence are also issues that affect children who are HIV infected besides psychological demands of the need to feel appreciated, loved and cared for.

Babu talks about the harrowing days following his parents’ death and the hope he regained after he was brought to the care of Snehadaan/Snehagram. In his own words, Babu sums up the value of the change Snehagram brings in the life of the children it protects, educates, cares and nurtures -

‘After my parents’ death, coping with dejection and ill-treatment from other family members who harbored misunderstandings and myths about HIV and its transmission, was one of the biggest challenges for me .’ 
-Babu

‘Snehagram moved me away from my home and the suppression there after my parents’ death and changed me from an ordinary child who didn’t think much to a child who has leadership skills, experience of having served as the Prime Minister for two terms in the Child Parliament , and aspirations to touch the sky. The International Children’s Games is the sky I want to touch. ’

As Babu heads for Netherlands he represents the entire global community of children who are HIV positive and his participation advocates to infected children to never think ‘negative’ about themselves, to believe that HIV is just a three-alphabet word and not an end to their dreams and aspirations. 

                                                           
Note:
Snehagram is a learning site of Karnataka Health Promotion Trust (KHPT) for its HIV/AIDS Orphans and Vulnerable Children Social Protection Project. The learning site at Snehagram at Krishnagiri district in Tamil Nadu(India) serves to demonstrate to other programs and other states how an institution based intervention is focused not just on care and treatment of children infected and affected with HIV or AIDS but also links them to opportunities related to education, over all development and vocation.

IV. Child Parliament gets Municipal Corporation to take action! 
Nandana Makkala Dhama and Spandana Network of Positive People

In Nandana Makkala Dhama hostel run by Spandana Network for Positive People, in Belgaum district, Karnataka things are changing rapidly after the formation of the Child Parliament. The transition of children from lack of clarity on the role and functionality of the elect leaders to realization of their problems and pro-active involvement to resolve them, seeking solutions collectively is the effect of USAID HIV/AIDS OVC Social Protection Project’s initiative to train institutions on Child Protection Policy (CPP) via workshops and institutional care givers trainings.

‘We feel confident after the success of getting the Municipal Corporation to clean the plot of land next to our hostel that had snakes and rodents. If the government officials have responded and helped us once, they will come to help us again!’

The predominant danger that was identified by the Child Parliament was that posed by snakes and rodents that frequented an empty site besides the hostel. In a bid to stop the snakes from living in that patch of land, the Child Parliament decided to clean it on their own after a discussion. When they were unsuccessful in clearing the plot satisfactorily they resolved to approach the Municipal Corporation with the help of the project District Project Coordinator, Mr. Nadaaf. A letter went out to the Corporation Commissioner of Belgaum and in a matter of nineteen days the corporation had laborers come down and clean the plot, making it safe for children in the campus.

The action from the government in this region of Karnataka was facilitated by the help and support of project staff and the establishment of a system like child parliament which makes it possible for children to be a stakeholder in decision making and issues that affect them. The partnership between the child parliament and the project staff was critical in overcoming challenges and issues of the institution and children living in them.

The children who have seen this positive outcome from their efforts feel confident and positive on their role as leaders. They are of the opinion that together they can approach all other issues and concerns of children in the hostel ‘collectively’.

Spandana Network for Positive People which runs this hostel in Belgaum is a partner with USAID HIV/AIDS OVC Social Protection Project and has benefitted from the project workshops on Child Protection Policy. Consequently, the Child Parliament was established in the institution with facilitation support from INSA-India which plays an exemplary role in building leadership among children in institutions.

USAID HIV/AIDS OVC Social Protection Project is implementing Child Protection Policy, institutional care givers trainings and Child Parliament within institutions caring for children affected with HIV/AIDS with an objective of making the institutions child friendly, upholding child rights and empowering children to be resilient.

The project walks ahead with efforts focused on getting more and more such institutions to adopt the Child Protection Policy and change the world that Children Affected with HIV/AIDS live in. 

V. 10 Life Skills : Making a difference in the life of HIV positive children
Chinnara Chilipili Workshops

“Chinnara Chilipili had a Clay Game where the nice plate I made with my hands out of the clay given to me was destroyed by the facilitator. I experienced anger and hurt but learnt from this exercise never to cause hurt to others. Empathy was my lesson.”

                    -    Nalini, 15, Belgaum, Participant of Chinnara Chilipili Workshop

Chinnara Chilipili Workshop being conducted for children affected by AIDS

Chinnara Chilipili, in Kannada literally means chirping children. A unique workshop by this name from the USAID HIV/AIDS Orphans and Vulnerable Children Social Protection Project is being conducted among children infected or affected with HIV/AIDS where through games and fun-filled activities, children are given the forum and environment to begin to express their problems and acquire life skills.

The World Health Organization defines the 10 life skills as that which the younger generation needs to be educated upon for achieving mental and physical health and attaining social harmony and tolerance thus building an organized, acceptable and beneficial lifestyle for everyone.

Chinnara Chilipili workshops train children affected by AIDS on these 10 life skills that include empathy, stress management, effective communication, self-awareness, building healthy relationships, problem solving, creative thinking, critical thinking, emotion management and decision making.

On ground, these life skill trainings help participating children change their lives by shifting their paradigm on their HIV status, stigma and discrimination, their life aspirations, health and overall well-being by 360 degree turn.

For 15 year old Nalini (name changed) from Belgaum district, Karnataka, attending the Chinnara Chilipili camp in Nippani was an interesting life changing episode. An orphan who is HIV positive herself, she lives with her younger sister and her grandfather and goes to Government High School. She recollects the death of both her parents to HIV/AIDS and shares how life has never been easy for either her or her family.

The breath of change come into her life in the form of new things she has picked up during the Chinnara Chilipili workshop. She exclaims, “The 10 life skills we learnt at the workshop taught me how to treat others and behave around people and the right way to live in the society.”

Nalini talks about the Clay game played during the workshop at length and shares how it served to make her sensitive to other’s pain and hurt and helped her develop empathy for others. 

This exercise involves giving all the children some clay and have them mold it into different objects of their liking. The children spend time and effort to make different items. Few children make animal figurines, others make utensils and toys. Nalini recounts how she made a plate out of the clay she was handed. The facilitator then destroys these objects of their hard labor. The children are asked to express about the feelings they are experiencing on seeing their clay objects being destroyed by turns. At the conclusion of this exercise children are explained how important it is to understand our behavior that may cause pain to others, to develop empathy and not cause hurt to others around us.

In this way, this unique workshop teaches children who are HIV positive, the different life skills in a demonstrative manner that causes them to not forget them and equip them with lessons that would enable them to live a quality life.

Like Nalini who says that she can see the progress in herself so clearly, where she is able to talk confidently in front of her peer group, identify right from wrong, deliberate upon her plans on education after completing class 10^th, utilize her time effectively to being a help to her grandfather, many children are experiencing a shift in the quality of their life too. 54 such Chinnara Chilipili camps have been conducted by the project in the 16 districts of Karnataka, Maharashtra and Tamil Nadu training a total of 1798 children out of which 882 were males and 916 were females.

A difference is being made through games and fun activities.