Building Resilience A COMMUNITY BASED APPROACH TO HIV AND AIDS VASAVYA'S EXPERIENCE: 2000 - 2010
About VMM Vasavya Mahila Mandali (VMM) is a women led, secular, non government organisation working in the rural and urban areas of Andhra Pradesh. The seeds of VMM were sown during India's freedom movement by Gora and Saraswathi, who were social reformers. They were inspired by Gandhian ideals of non violence, service to humanity and equality. Chennupati Vidya, their daughter who trained at Gandhi's Sevagram Ashram, along with her sister Mythri and sisiter-in-law Hemlatha formally laid the foundation of VMM in 1969. Today VMM is steered by Chennupati's daughters Rashmi, Dr. Keerthi and Dr. Deeksha. VMM's vision has been to promote the comprehensive social, economic and political development of women, children and youth in vulnerable situations. This it achieves through a range of fairly diverse programmes covering Health, Education, Nutrition, Livelihood, Human Rights and Environment related issues. In 2010 the organisation completed 40 years of service. VMM initiatives include the Swetcha Gora Eye Bank, a Multipurpose Female Health Workers
Below: VMM Team conducts a Community Meeting to understand people's needs.
Training Institute, the Gora Abhay Nivas, which is a shelter for women, a Night Shelter for Boys and Priyadarshini Working Women's Hostel.
VMMs Care and Support Programme for Children Affected by AIDS In 2000, in response to the growing challenge of the HIV epidemic, the International HIV/AIDS Alliance (the Alliance) with financial support from Abbott Fund and the European Union initiated a programme of home and community based care for children affected by HIV/AIDS and their families with local organisations in three states in India. The Alliance strategically identified VMM as a partner because of its strong and sustained presence in the coastal districts of rural Andhra Pradesh. VMM’s effectiveness in the community and its linkages with the government institutions were strengths that had contributed to the organisation’s credibility. At first, the Alliance helped VMM recognise the need to expand from HIV prevention and awareness programmes to care and support programmes for children and families directly affected by AIDS. In an initial needs assessment, VMM very quickly realised the extent of the HIV pandemic and the need for an urgent community based care and support programme.
VMM also came face to face with the extreme stigma that existed in the community against people living with HIV and AIDS. AIDS was perceived as a “deadly disease� that happened as a result of immoral behaviour. It was tough to find people willing to work on such a project. The urgent need to train skilled workers and build capacity of local organisations was apparent.
HIV and AIDS in India AIDS was first detected in India in 1986. Since then the spread of HIV has been swift with HIV infection reported in all states of India and Union Territories. Today, India has the largest number of people living with HIV in Asia. It is estimated that, India with a prevalence rate of 0.31% (NACO 2009) is home to about 2.43 million people living with HIV/AIDS.
By 2003, VMM realised the tremendous impact of HIV and AIDS on children. AIDS affected children had either lost one or both parents to AIDS or had one or both parents living with AIDS. Also, many of the children were living with HIV. VMM was faced with the harsh realities of orphan children, abandoned or living alone and managing child headed homes. Many of the girls were child widows.
Though the epidemic has been more extreme in six Southern and North Eastern states, recently there has been an increase in the number of new infections in states with lower prevalence but high vulnerability. Reports indicate that Andhra Pradesh with a HIV prevalence of 0.9% has over 500,000 people living with HIV/AIDS (NACO 2009).
VMM's challenge was to transform the overwhelmingly negative perceptions in the community into empathetic, supportive attitudes and build a child centric, community based, sustainable care and support programme.
Half of the entire new HIV infections world wide are among young people aged between 15-24 years. UNAIDS estimates that the number of children living with HIV and AIDS in India is 202,000 and that roughly 56,700 HIV infected children are born every year. Half of HIV positive children die undiagnosed before their second birthday. This suggests that India is probably home to the largest number of AIDS orphans in the world.
This document attempts to capture VMM's decade long dedicated experience in addressing this challenge and finding path breaking solutions.
Adilabad
Andhra Pradesh
Nizamabad
Karimnagar
Vijayanagaram Srikakulam
Warangal Medak Hyderabad Khammam Rangareddy
Well known for its advancement in Information Technology, the state situated in Southern India has a population of 75 million people. Ironically, Andhra Pradesh has the highest rate of HIV prevalence in India. In 2002, the National AIDS Control Organisation had estimated that 0.4 million people were living with HIV in Andhra Pradesh, that is, 10% of the total number of cases in India.
Nalgonda Mahbubnagar
Kamulu
Ananthapur
Guntur
Prakasam
Kadapa
Nelluru
Chittoor
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Vishakhapatnam East Godavari
West Godavari Krishna
Milestones
2003 VMM with partners carries out extensive l
2000
community organisation. Adult groups, Children's Groups, School Support Groups and Grannies Clubs are formed.
VMM first linked to International HIV/AIDS l Alliance, Abbott Fund and European Union.
Community Resource Mobilisation is scaled l up.
2001
Children's Consultation: Children actively l participate in planning and review of the project.
VMM recognises the magnitude of the HIV l pandemic.
Links with private sector companies are l
There are high levels of stigma and AIDS is l
established.
perceived as a "deadly disease" in communities.
A study on AIDS Orphans in India is l commissioned by the World Bank.
VMM understands community needs by l conducting extensive community assessments.
The first Community Foster Care programme l in India for children affected by AIDS is initiated.
An intensive staff development initiative l takes place. VMM partners with other local NGOs and l
2004
forms a community and home based care and support network of organisations in 9 districts of Andhra Pradesh.
VMM's work with children affected by AIDS l gains attention from other key stakeholders including state and central government departments and international donors and NGOs. VMM is invited to provide expert advice on the subject.
The International HIV/AIDS Alliance l initiates an extensive training and mentoring programme for the network. A comprehensive package of services is l
Community begins to value the counselling l
introduced for families and children affected by AIDS.
support provided by the Programme and community participation increases. The project is given a child centric focus. l
2002
Self help groups of people living with HIV l and AIDS are formed. Two of these groups are formally registered by the government of Andhra Pradesh.
VMM engages communities to review l progress of the programme. There are high expectations in the communities from the programme.
Revolving Funds for Income Generation are l introduced for families affected by AIDS.
There are high levels of stigma against l people with AIDS in the medical fraternity. There are no facilities for HIV testing and treatment in coastal Andhra Pradesh.
Picturing Hope Project - An innovative l initiative supported by Abbott Fund for children affected by AIDS in India. Skills building workshops allow children to capture their stories and emotions through photographs, which are exhibited internationally.
VMM initiates an AIDS awareness campaign l with the media. VMM and community members present the l local AIDS scenario to the Vice President of India at a National Thematic Workshop organised by the International HIV/AIDS Alliance. Catholic Relief Services Programme provides l funds to care and support for families affected by AIDS.
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l Youth Centre is set up for Street Youth.
2005
l VMM partners with 41 district level HIV
Support for Children's Education is initiated l
Positive Networks and NGOs to scale up children affected by AIDS initiatives in Andhra Pradesh..
with Deutsch Bank Funds. Peer Counselling is strengthened. l Care and Support services are expanded to l
VMM receives financial support from Global l
include treatment. Anti Retroviral Therapy (ART) is introduced for adults.
Fund through the India HIV /AIDS Alliance to continue its care and support services for children affected by HIV/ AIDS.
Tuberculosis treatment is integrated in the l programme.
Children's Community Based Organisation is l Registered.
2006 2008
VMM begins to hand over coordination of l activities to local communities and expand into new geographical areas.
VMM starts receiving financial and technical l support directly from Abbott Fund.
VMM strengthens its documentation and l
A Children's Village is created as a Transit l
research activities. Knowledge sharing with other organisations is initiated.
Home for children affected by HIV and AIDS. Health on Wheels, a Mobile Clinic l
VMM is selected as a nodal organisation for l
programme visits rural areas.
Andhra Pradesh State AIDS Control Society (Government AIDS prevention organisation) to build capacity of outreach workers.
A Prevention of Mother to Child l transmission of HIV (PMTCT) programme is initiated..
Pilot Paediatric Programme is introduced l
Bal Sahyog Programme offering family l
and scaled up.
centred services is introduced .
VMM establishes a Mother and Child Unit. l Women's Resource Centre and Girl Child l
2009
Centres are set up with support from Unnati Foundation
Health on Wheels programme is expanded l
Education for Orphans: Learning for Life l
to include Integrated Counselling and Testing.
Programme is initiated.
VMM is elected to the Country Coordination l Mechanism for Global Fund Programming in India –under the Child Rights constituency.
2007 VMM develops a Paediatric Counselling l
Linkages are developed with Andhra l
Module for NACO with the support of WHO India office.
University to build capacity of youth to work on public health.
Prerana Adherance Clubs are created. l Faith based organisations come forward to l
2010
sponsor children.
After ten years Abbott closes its successful l partnership with VMM - Abbott Fund's longest grantees ever.
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COMMUNITY TRANSFORMATION FROM STIGMA TO SUPPORT
Stigma and Discrimination When VMM began working with people living with HIV and AIDS in 2001, the stigma faced by HIV affected people was inconceivable. Discrimination took many forms and was extensive: HIV infected people were not allowed to use public taps to fetch water; they were not invited for family functions or social gatherings. Friends, relatives and neighbours would avoid visiting their homes. People maintained a physical distance and extended family members would not allow children to hug their HIV positive parents or sleep beside them. HIV positive people were not allowed to use public toilets and people would not rent their homes to them. Spouses were hesitant to take part in the cremation of their partners'.
A young person's drawing during the Picturing Hope Project, showing how HIV infected mother and child are not being allowed to use the public tap to fetch water
Health care professionals did not provide treatment even for general health ailments. They would not conducted deliveries for HIV positive pregnant women. Due to the high levels of stigma - in addition to affecting an individual’s physical health the disease had a huge social impact. In many cases infected and affected people felt shame and guilt and would live in isolation.
Children of people living with AIDS were not allowed to study in local schools. They were not allowed to eat their midday meals with other children in school.
Below, left to right: Support Group Members - Gyanendra, Abdullah, L. Divina
I was afraid and angry when I discovered that I was HIV positive. Why did this happen to me? Who would take care of my children? I felt like ending my life. My wife's family wanted her to return to her parental home. But with support from VMM outreach workers and the support group members I started to look at my life differently. Though my wife was angry with me initially she now hopes that our daughters get a husband like me!
because I wanted to help others like me. I didn't want any one to suffer like me. Abdullah, 42 years, Living with HIV
When we first learned that my husband was HIV positive, both of us considered committing suicide in the Krishna river. My in-laws forced us to think about our children and that is why we changed our mind. After we joined the support group we received so much information about HIV and AIDS that I now feel as qualified as an MBBS doctor! Now my husband is a counsellor at an ART centre and every day he motivates many people to think about life in a positive way.
Gyanendra, 40 years, Living with HIV
My neighbours assumed that I got infected through an extra-marital relationship. No one would sit by me. Shop owners would ask me to keep my distance. I joined the support group
L Divina, 33 years
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VMM realised the need to mitigate the negative impact of stigma, discrimination and social exclusion in the community towards people and families affected by HIV and AIDS. Mass events, group meetings, creation of community support structures, involving the leaders in the community were the gamut of strategies identified to address the challenge of stigma. The most significant of these was the creation of community support structures.
Children Support Groups Following the success of adult support groups children affected by HIV were encouraged to form peer groups. Gradually other community children got attracted to these support groups because of the fun and child friendly activities in the group, including AIDS awareness raising games. In the support groups, life skills were taught to help affected children cope with their circumstances. In a way, these children were HIV and AIDS ambassadors who were setting an example for adults in the community.
Adult Support Groups Community support groups were identified as an effective counter strategy to deal with social exclusion. People facing stigma were encouraged to form a community of their own as adult support groups. In the beginning, the support group members were fearful of meeting in public places close to their own homes, so they would have group meetings behind closed doors in distant locations.
Above: Children from the Support Group going for a picnic in a bus. Drawing by T Sunny, 14 years. Below: Support Group members collect a fistful of rice from every home to ensure food security for families affected by HIV and AIDS.
Gradually they began to involve family and community leaders to attend meetings as they realized the importance of getting family and community support and engagement. This created acceptance and an enabling environment, and allowed group members to live in their own communities with dignity. Their health started to improve, and they began having group meetings in their own homes. Now support group members are respected as resource persons on AIDS in the same communities, which stigmatised them.
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W
hen I was around 13 years old, my parents decided to put me into a hostel. Around this time a photography workshop was organised by VMM supporting my stay at the hostel. It was my summer vacations and I was happy to participate. At the workshop, one young girl told me that my entire family was HIV positive. I found it absurd and denied it. I did not believe her. I went home and asked my mother whether it was true. She too denied it. My mother was always angry those days and I did not ask her again. VMM frequently organised workshops on HIV and AIDS and I was invited for many of them. It was after one such workshop that I came home and saw my brother's blood reports. Then I saw my parents' medicines. I recognised the names and realised that indeed my entire family was infected with HIV.
there were no other spaces where I felt welcome. In 2004 my brother got TB of the brain and died. A year later I met a famous television star in Hyderabad during his birthday celebrations. There were TV crews and some of us children got to talk to the celebrity. I told him how my family was affected by HIV. It was a big mistake. My interview was flashed across 24 hour television in a loop and presented as breaking news. People came to my father telling him that his daughter was telling the world about his condition. My father was very angry. His employers, co-workers and friends all began avoiding him. He did not go to work for three months and stopped having his medicines. He beat me and refused to talk to me. I was scared to go home and so I stayed at the hostel. If I ever went out people would recognise me and I felt terrible.
My younger brother used to be frequently sick with allergies and stomach pains. At the age of nine my brother had an appendix operation. After the surgery the wound wouldn't heal, so the doctor suggested a HIV test. My brother tested positive for HIV. Then my father (a lorry driver) and mother got tested and they too tested positive. My mother had withheld this information because she wanted to protect me. In those days people believed that having HIV was like receiving a death sentence; and that those who lived with HIV positive people were at risk of getting infected.
My brothers illness and pain affected me deeply. I decided to study nursing – an 18 month programme supported by VMM. Soon I got a chance to work as an outreach worker working with HIV affected children. With VMM’s support I continued to upgrade my skills and experience. When I became 18, a colleague who was working with me and who knew everything about my family proposed to me. We got married after both our families agreed.
I now realised why my younger brother had not recovered from his surgery; why people had started treating us differently, why I could no longer visit my relatives homes’ during the holidays. People stopped visiting us and if they did – then they would stand outside the house. If we offered any food, it would be rudely rejected. They even brought their own water, so they wouldn't have to drink water from our house.
Today I am working as a Clinical Instructor at the VMM Nursing College. Thanks to my education, my communication skills and the support I have received from my husband and his family I feel confident and can face the world with my head held high.
I remember the neighbours telling me: “Don't play with our children - go play with your brother.” Slowly the HIV support group members became my only friends and family. During holidays I would visit their homes since
Revathi Kalaganti, Kandrika, 21 years
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School Support Groups
Above: "In our Support Group, both boys and girls meet together..." Drawing by Venkat Lakshmi, 14 years. Below: Support Group children involved in a participatory review to identify their needs.
The need for school based support groups was identified when AIDS affected children in B V Subba Reddy High School in Kandrika, a relocated urban slum in Krishna district shared how they were being treated badly by other students in a local school. 25 children in the eighth and ninth standards, two teachers and a community volunteer were mobilised to form a School Support Group that would discuss HIV and AIDS and adolescence related issues. This helped raise awareness and reduce the harassment that affected children were facing in the school. The success of this initiative encouraged other schools in the district to form school support groups, and very soon School Support Groups were established in eight additional districts. Significantly, as a result of School Support Groups, schools in the district began participating actively in community mobilisation and AIDS awareness raising mass events. Furthermore, the improved academic performance of children who were part of school support groups led to teachers' encouraging other children to join school support groups.
Grannies Clubs In 2004, VMM noticed that more and more children were becoming orphans. By finding out from children in support groups, outreach staff realised that majority of the children were cared for by their grandparents. The community asked for a special intervention with grandmothers. Initially, grannies were seen as beneficiaries and were provided material support only. Soon they became active participants in the programme. For example, they volunteered as DOTS providers in the TB programme. Grannies were good advocates for HIV. Once they began speaking out and sharing their experiences, it helped people understand their situation better. Grannies clubs improved the quality of life of grannies and their grand children by improving health seeking behaviour, adherence to anti retroviral therapy and anti tuberculosis therapy and nutrition.
Grannies Clubs celebrate International Day for the Elderly, with a competition especially for Grannies, October 2004, Vijaywada.
8
PUTTING CHILDREN FIRST WORKING WITH CHILDREN AFFECTED BY HIV & AIDS
I often wondered, why did our family suffer like this? I felt angry with my father because he was an alcoholic and used to visit sex workers. I felt sad for my poor mother, who suffered for no fault of hers. The neighbours used to say my father got what he deserved. I decided to be as different from my father as I could. I wanted a good future, I wanted to make a difference in society. I completed my schooling and did a diploma at a polytechnic. I was keen on pursuing a B.Tech degree. Through the local NGO I learned that the government had passed an order that would enable orphans to get priority in higher education institutes. However when I went to claim my Orphan's Certificate no one in the local government offices (not even the District Joint Collector) was aware of it. I was angry that they were so casual about the matter.
M
y father had HIV and I was just eight when he died. Two years later my mother who was also infected with HIV started falling sick. Our relatives avoided us and even my older sisters who were already married were not allowed to visit our home.
I persisted and finally had to educate them on not only the order but also on how to fill up the various application forms. Eventually I got my certificate and my seat in the college.
My older brother was 12, he was trying to earn a living for our family; besides both he and my grandmother were afraid to nurse my mother. So I looked after my mother during the last month of her illness. I cleaned her vomit, put the bed pan, changed her clothes. I walked for three kilometres to the next village to get her medicines. During that time I was also going to school. Over the weekends I worked as a part time labourer. It was very painful to see my mother suffer so much. My mother died when I was 11 years old.
Today I am optimistic about my future. I have many dreams. I want to join the IAS and serve in villages. I want to set up a nursing home for bedridden patients... K Venkateshwarlu, 19 years
When I was 12 years old I got involved with the local NGO and attended many workshops on HIV. I used to get annoyed when I would hear medical doctors focus on where the virus had come from and other theoretical concepts about HIV. I had seen every stage of my mothers illness and observed the deterioration. I remember she lost her vision and hearing towards the end. As I became more confident I would stand up and share my experiences with doctors at workshops. I was also an active member of the school support group. I remember collecting money from the community to conduct an event on World AIDS Day. "In the School Support Group, we do awareness programmes on HIV and AIDS". Drawing by M. Venkat Sai, Age 15 years .
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HIV and AIDS has a life changing impact on children. Children lose their parents, face stigma, experience discrimination and are deprived of their basic needs of food, shelter and clothes. They have to give up their assets and are separated from their siblings. Their health deteriorates and as a result many children stop their education. This results in child headed families, child labour and street children. Children show truancy, indulge in risk behaviours, attempt suicide and get addicted to alcohol, tobacco and other drugs.
"In the Support Group, if one person is crying and sad, we try and make her happy". Drawing by Parwati Age 15 years .
Most parents, even if they are aware of their terminal illness, do not make any legal arrangements for their children before their death. Children are abandoned with limited or no resources, have no identity papers like birth certificate or ration cards. Extended families are often too poor and unwilling to provide shelter to AIDS orphans.
were linked to social security schemes of the government for pensions or livelihood. Some need based specific approaches were also identified. These are shared below:
Foster Care Foster care in the community was identified as an alternative approach to providing social protection to AIDS orphans. Overcoming initial fears, in true community spirit religious leaders, self help group members and others came forward to provide a home and family atmosphere to AIDS orphans irrespective of their caste, creed and religion.
Moreover children living with HIV who are physically and mentally challenged and girls living with HIV are even more vulnerable. They are often subject to trafficking, malnutrition and sexual abuse. Also there is negligence from care givers in the family because of ignorance. In response, VMM took measures with the community to provide social protection to children affected by AIDS.
Street youth attending non formal evening classes, Vijaywada.
Child Protection To ensure the social protection of children in the community a number of strategies were identified. These ranged from psychosocial support for children and grandparents, succession planning, encouraging children to go back to school, non formal education schools and sensitization of teachers and students through formation of children's clubs. Safety nets were developed by involving key community members like religious leaders, women's self help groups and health professionals. The Integrated Child Development Scheme and other programmes of the government and civil society organisations were approached to promote social protection of children affected by AIDS. Relatives and extended families of children affected by AIDS 11
The model was initially demonstrated by one family and it slowly caught on. Today many children raised in foster care have completed their senior school and are pursuing professional courses or have jobs. At the same time, advocacy with the government to officially accept the programme and provide cash transfers to families providing foster care was carried out successfully.
Orphans and Vulnerable Children network
Legal Aid Once a person with AIDS had died, orphan children and young widows became especially vulnerable to discrimination and exploitation by relatives, neighbours and money lenders. They were denied their inheritance and property rights and women specially faced abuse and violence. Sensitization meetings with district bar associations and lawyers forums led to community level legal camps and free legal services being offered to PLHA. Linkages were also made with para legal volunteers who were based in the community.
During a participatory community review the diverse children support groups expressed the need to set up a network of vulnerable children. Children Affected by AIDS, Children Living with HIV and AIDS, Children on the streets, Child victims of trafficking were all included as part of this network. The network was registered in 2007. The main thrust of the network was to train children in life skills, child rights, property rights and advocacy with different stake holders to address children's concerns.
Children's Village
Protecting the Rights of Children
To address the basic needs of vulnerable children who were affected by HIV and AIDS a transit home was created. The idea was to provide temporary support to children who did not have a place to stay or food security. In the village, social protection, food, recreation, formal education and life skills training is provided. During the children's stay at the village, relatives are counselled and motivated so that children can return to their extended families. Furthermore, VMM had set up a Night Shelter for Boys with Abbott Fund support, which is self-sustaining now.
People living with HIV and AIDS were often forced to migrate from their hometowns due to the stigma and discrimination they faced. This not only reduced their physical and psychological well being but also forced them to forego their rights and opportunities to access Government and Civil Society Services. A series of advocacy meets were held with village heads and peoples' representatives that eventually led to the passing of a unanimous resolution: People Living with HIV and AIDS identified at present and in future will be given priority in accessing the government service to provide social protection.
Above right: "We eat thrice a day at the Children's Village; rice, daal, curry, chutney and dahi" Drawing by A. Vijay Lakshmi, 10 years. Below: Gardening at the Children's Village.
It was resolved not to show stigma and discrimination towards PLHA and their families. People of this village should execute this “resolution�. This was replicated in 25 village panchayats and two urban municipalities in Andhra Pradesh.
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SECURING THE FUTURE LIVELIHOODS & SERVICES FOR PEOPLE LIVING WITH HIV & AIDS
I
work. My weaving helped me earn a regular monthly income of INR 2000. This helped me send my three daughters to school and support the family.
got married at the age of 15 years to a handloom weaver. My husband would travel long distances to market the products he used to weave and so he stayed away from home quite a lot. I remember it was 2002, when I went to the local government hospital for a minor health problem. The doctors suggested I get tested for HIV and they referred me to a HIV testing centre at Ongole, a few hours away from my village.
In 2006, the government housing department provided two cents (96 square yards) of land for construction of a house. Under a government scheme with the support of local legislative member I was allotted a 75% grant for construction of house. The NGO motivated the local contractor to contribute as well and I now have a roof over my head. The same year I received a grant of INR 6500 from the revolving fund for income generation provided by Abbott Fund. This enabled me to improve the handloom weaving unit. I was able to repay the interest free loan in easy instalments. Subsequently I also became a member of the handloom weaver's society and upgraded my skills.
The tests results revealed that I was HIV positive. I was shocked. With a heavy heart I travelled home to share the news with my husband. To my surprise my husband did not react when I told him my status. I felt it was important that he get tested and I kept telling him to go for an HIV test but he would refuse. Eventually he admitted to me that he had done a HIV test two years ago and he was also HIV positive. I was shattered and depressed. I had four children, what would become of them? A year later my youngest child and only son tested positive for HIV. At that time there were no services for children and without any treatment he died the following year. Yet another year later my husband died of severe opportunistic infections. My daughters and I now had to reconfigure our lives. Since my husband was a member of the Weaver's Cooperative Society, I received death benefits and insurance up to INR 50,000 which helped me pay off the debts. The NGO helped me claim widow benefits from the government scheme for widows. I also managed to apply for the government ration card and widow pension scheme which enabled me to receive monthly food supplies.
My daughters do not have HIV. All three have completed their class 10 exams (O levels). The eldest is married, the second daughter is earning and the third one is still studying. Today I can look ahead in life once again. I have a secure roof over my head; I have a stable livelihood and savings. I have been able to give my three daughters a strong foundation.
In 2005 I started falling sick. I was unable to work. It was a tough situation since I was the sole bread earner. At this time the support group came forward to help me. Members would accompany me to the ART centre. The emotional support I received then was invaluable.
Through all the support I received from both the NGO and government programmes, life is worth living again!
It took me six months to recover after regular medication and monitoring. I then went back to
Bhagya Lakshmi, 31 years
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People living with HIV and AIDS (PLHA) often lose their jobs or livelihood because of repeated opportunistic infections, low immunity levels and decreased physical strength. When the breadwinner dies, other family members find themselves ill equipped to deal with the challenges.
Recognising the need to enable families to live with dignity, income generation programmes were conceived.
Income Generation Programmes The organisation staff during their field visits would identify vulnerable families with people living with HIV and AIDS (PLHA), who might require Income Generation Support. Eligible PLHA would be encouraged to apply for a grant. Through a week long monitoring process interest free loans ranging from INR 500 to INR 5000 would be sanctioned. Repayment schedules and installments would be fixed after consultations with the beneficiaries. Repayment could happen in a flexible manner based on their sources of income though a fortnightly schedule was encouraged. PLHA could avail multiple loans through the revolving fund generated from the repayments made by other beneficiaries.
Women especially find it hard to suddenly make the transition from being home bound to travelling out in the world to earn a living. Lack of confidence, skills or education make it all the more daunting. Women find themselves pushed to doing menial jobs or sex work. The loss of livelihood affects the family's food security. This in turn results in malnourishment and further ill health. When parents are sick or have died children have to start working to survive. Adolescent girls find themselves vulnerable to sexual abuse.
Income Generation Programmes led to increased self dependency and confidence. Income levels increased from INR 1500 to INR 3000. Children from these families were able to continue their education. Being able to afford at least two meals a day improved the immunity of PLHA, thereby reducing their health problems. These families were also able to save money. Left: A woman making snack packs of rice crisps to augment her income.
I took a loan of INR 10,000 from the Self Help Group facilitated by the NGO and set up a shop selling chocolates and stationary.
expanded the business to selling ice creams. I earned a steady income and was able to raise the children well.
When my neighbour died of AIDS I decided to take care of his two children under foster care. I now needed more money to look after the children so I took an interest free loan from the VMM/ Abbott Care and Support revolving fund to buy a Cold Drink box.
When the children call me “Nanamma” “granny” it touches my heart. I will always look after these children as though they are my own. Sivamma, 48 years, a foster mother
The business flourished and I repaid the loan in installments. Later I further upgraded and
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Skill Development
handed across on the same day that they would visit the project office. These could be immediately en-cashed at the bank. Support would be extended to people who were sick. Psycho social support was also an important aspect in preparing PLHAs and their families mentally for this new venture.
Need and skill assessments were conducted to get a sense of appropriate projects. Poor health considerations made labour intensive jobs a strain. Many women expressed that they did not have any technical skills but had skills to manage micro enterprises. They identified fruit and vegetable vending, Milk trading, Petty shops, Tailoring, Wet and Dry fish sale, and Tiffin centres as viable enterprises. Based on these needs entrepreneurship skills were provided to the targeted family members.
Family Centric Livelihoods An important strategic learning was to involve the family members of PLHAs in managing the income generation project. This meant that right from the application to the implementation stage family members would be involved. This ensured that even when the PLHA fell sick, family members could continue working. This strategy also ensured the loan would get repaid which otherwise would have to be written off with the death of the applicant.
Humanitarian Considerations Being aware of the limitations on health , efforts were made to make this process smooth and non bureaucratic for the applicants. Cheques made to the applicants would be
Below left: Nagjyoti at work at her shop. Right: Lakshmi with family photographs of her husband and son who died of AIDS related infections.
My husband died of AIDS leaving me and my little son infected with HIV. People would avoid me and go back into their homes when they would see me. I felt alone and isolated. There was not much I knew how to do. With the NGOs support I now have a shop where I sell some odds and ends. My son goes to a neighbouring school. I have hope again.
I had dreams as a child that I would grow up to be an independant woman. I spoke up against my father and married my neighbour – who belonged to another caste. But my world fell apart when I learned that I was HIV positive. Outreach workers from the NGO regularly counselled me and this motivated me to take control of my life again. Today I am working in a factory and living a life of dignity.
Nagjyoti, 27 years
Lakshmi, 41 years
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Increasing Access to Care and Support Services In 2000 when VMM began working on AIDS care, government or non-governmental services for people living with HIV were few and far between.. While a few testing services had been introduced there were practically no services for treatment. It was in this environment that VMM began to demonstrate the dire need for services as well as alternative models that could address the needs of people living with HIV and AIDS. In later years VMM also promoted access to existing services by government and other NGOs by creating a directory of services available in every district. Through its Home and Community Based Care and Support programme that spanned a decade, VMM and 17 partner NGOs in Andhra Pradesh directly reached out to 48,330 HIV infected and affected persons. Apart from the creation of community based support groups, the programme also addressed hygiene, nutrition, sexual health, HIV/AIDS, Opportunistic Infections and other diseases. The ten-year programme was implemented with financial and technical support from the Abbott Fund and technical inputs from India HIV/AIDS Alliance. Education of children living with HIV and children affected by HIV/AIDS was also addressed with support from Deutsche Bank, Global Fund and Family Health India. Care & Treatment Adherence was supported by the Clinton Foundation.
Moving Ahead In the last decade, India has made rapid progress economically and in development. The state of Andhra Pradesh has contributed significantly to India's economic growth. The state's per capita income is higher than the national average and poverty rates have declined faster than rest of the country. However, much remains to be achieved in human development. There are serious challenges in areas of health, education and gender equity in Andhra Pradesh. Malnutrition affects about 30% of children between 0-6 years, one baby in every 19 live births dies before its first birthday and the female literacy rate is 33%. There is more to be done. Vasavya Mahila Mandali will continue to strive with communities for the betterment of women and children in Andhra Pradesh. The organisation appeals to benefactors to step forward and join its journey.
Above left: “Health on Wheels” increases communities’ access to awareness programmes, counselling & testing services. Below: "In the support group I take my friend for Tuberculosis treatment to the hospital". Drawing by Siripriya, 14 years
Project Partners Action for Integrated Rural and Tribal Development Social Service Society (AIRTDS), Byraju Foundation, Coastal Network of Positive People (CNP+), Green Vision, College Community Network Centre (CCNC), Kolleru Rural Development Service Organization (KRDSO), Lion's Family Welfare Planning Trust (LFWPT), Mahila Mandali, Needs Serving Society (NEEDS), Nippon Care-Fit Service Association-India (NCSA), Peace Education and Rural Development (PERD), Rakshana, Rotary Community Service Trust (RCST), Rural Environment and Education Development Society (REEDS), Sanghamithra Service Society (SSS), Saraswathi Gora Youth Centre (SGYC), Serve Train Educate People's Society (STEPS), Solomon Health and Development of the Weaker Societies (SHADOWS), St.Paul's Trust, Swamybabu & Vajramma Charitable Trust (SVCT), Youth Club of Bejjipuram (YCB).
Documentation Support Dr. Sujit Ghosh Thoughtshop Foundation thoughtshopfoundation.org
Donor
Acknowledgements International HIV AIDS Alliance Andhra Pradesh State AIDS Prevention and Control Society
For more information please contact:
Vasavya Mahila Mandali Benz Circle, Vijayawada 520 010 Andhra Pradesh, India | (+91) 86624 73056 / 70966 vasavyamm@sify.com | www.vasavya.com Š VMM, 2011