Jeyapaul Sunder Singh S. : A Journey through the Wisdom in Community health-Specially for HIV and AIDS Epidemic
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- Jeyapaul Sunder Singh S. : A Journey through the Wisdom in Community health-Specially for HIV and AIDS Epidemic
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S. Jeyapaul – CHLP 2008-09
A journey through the
wisdom in
community health
June 2008 to February 2009
Report by
S. Jeyapaul Sunder Singh
CHLP Fellow
Submitted to
Community Health Cell
Bangalore
Mentor
Dr. Rakhal Gaitonde
Sochara &
Makkal Nalavaalvu Iyakkam
Chennai
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S. Jeyapaul – CHLP 2008-09
This report is dedicated
to millions of children living with HIV and
children orphaned by HIV AIDS around the world…
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S. Jeyapaul – CHLP 2008-09
Acknowledgments
In my journey through the wisdom in community health at CHC, I would like to thank
first of all Dr. Ravi Narayan for his commitment, passion, humbleness and openness to
learn and to make me learn. Truly he is an inspiration to continue the journey with
confidence.
Dr. Thelma, a successful woman in public health, her in-depth analytical and intellectual
lectures were extremely helpful to think through myself during the fellowship.
Dr. Rakhal, my kind mentor without him, I would not have been able to come through the
fellowship and helped me to think through deeply upon every projects I visited, every
views and observations I presented in every sharing meeting. I sincerely thank him for his
support both personally and in the fellowship.
I would acknowledge Dr. Sukanya, for her encouragement to each fellow from
crystallizing our learning objectives to completing our final report.
If I would say I have understood and learnt about the caste and political dynamics in any
community, my sincere thanks will be to Mr. E. Premdoss. I can well remember the
graph that denotes where the movements and NGOs are placed pertaining to any issue.
Overall, I am thankful for all the resource people, the CHC team worked hard to bring
them to share their experiences with nine of our fellows. Such a rich experience sharing
and wisdom is difficult to get even if one is ready to spend any amount of resources.
Another learning experience by observation is the staffs of CHC; truly I saw an invisible
structure without any hierarchy. I would sincerely thank all the staff at CHC who helped
me fell friendly and comfortable during the course of the learning programme.
I am debted to thank my fellow friends, Karibasapa, Aditya, Sabyasachi, Sis. Ria, Sudha,
Savithri, Varsha and Lakshmi. Each one of them from different background and
experience shared so much of knowledge and a true friendship helping me to realize
together we can.
I also acknowledge and thank all the directors of the projects I visited and the time each
one took to share with me their immense knowledge and experience in the field they are
in.
Not but not the least, with all of my heart I thank all the lovely children who participated
with me in this fellowship and helped me understand their problems and the courage each
one of them had to live life with dignity and passion for one another. I bow down before
them!
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S. Jeyapaul – CHLP 2008-09
Contents
1 Things that really disturbs me…
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2 What inspired me to join CHLP?
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3 My expressions of 5 week orientation program
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4 My objectives for the 9 months Community Health Learning Program
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5 What I did, in line with set objectives
THE School
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Balamandir
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Santhosh Siruvar Maiyam, Melur
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Bangalore OVC Project
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6 Trainings I participated and facilitated
Life Skills Education
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Children Parliament
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Disclosure Workshop for mothers living with HIV AIDS
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Comic Workshop
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7 Advocacy Events Participated
National SACS Project Directors Conference
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st
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3 National Consultation of Women living with HIV AIDS
1 State Level Consultation for Children in Kerala
8 Organisations that I networked
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9 Understanding OVC Policies in India
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10 Building a resource library of children related documents and schemes
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11 Learning from Namakkal Visits in January 2009
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12 Looking Inward – What did I learn about myself?
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13 Looking Outward – What did I learn about the community?
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14 Looking Ahead – Towards a Community Health approach to working
with children living with and affected by HIV and AIDS
15 Books, Documents, Reports and Movies – read and watched
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Annexures
I – JLICA Report Brief
II – Child Marriages
III – Concerns of children living with grand parents
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S. Jeyapaul – CHLP 2008-09
Things that really disturbs me…
The HIV and AIDS epidemic has a long wave length and the limited number of people
accessing ART in India means the impact of orphan hood due to AIDS will be an
ongoing burden. It is important to note that AIDS orphans reflect the history of the
epidemic; therefore health and social support structures must be in place to accommodate
any projected impact.
An overview of the most recent estimated numbers of children affected by HIV and
AIDS in India suggests
• 150,000 children were infected vertically,
• 1,500,000 orphaned due to AIDS and
• 7,000,000 with HIV positive parents.
• 220,000 children currently living with HIV
• Over 50,000 children born HIV every year1
More detailed estimates have not been attempted as the country does not have a national
generalised epidemic. However, the vast population size and prolonged nature of
Orphans and Vulnerable Children (OVC) issues means that its true impact is widely felt
and its scope significant. UNICEF has documented that the estimated total number of
orphans, due to all causes across India (2005) was in the region of 25,700,000. A fair
approximation of number of orphans due to HIV and AIDS equates to 6% of orphans as a
result of AIDS.
This serves as a reflection of the countries status and the challenge posed from children
directly and indirectly affected by HIV and AIDS. Importantly, the number of ‘vulnerable
children’ to HIV and AIDS is deemed so vast, amounting to tens of millions, that
previous studies have found it difficult to incorporate this group into any meaningful
research.
Over these emerging issues among children orphaned by HIV AIDS epidemic, the role of
Government and civil society organizations were so much limited in providing just the
ARV therapy, nutrition and education. Unfortunately, the under mentioned issues were
neglected and often not considered by Government and the NGOs implementing
programmes for children affected by HIV and AIDS.
Some of the important issues that affect orphans and vulnerable children includes
• Sexual abuse
• Child laborers
• Sickness and burden of drugs and treatment
• Discrimination (school, family & community)
• Early marriages of girl children of positive parents
• Deprived on joy of child hood
• No social security
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Richard Matthew Lee, UNAIDS, September 2008 – Orphans and Vulnerable Children - Research Study
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S. Jeyapaul – CHLP 2008-09
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Fostered children as domestic workers
………….and the list goes on and on
These concerns made me to firmly decide to dedicate my life in supporting and
empowering children affected and orphaned by HIV and AIDS. Support the children and
make their voices are heard by various stakeholders and Government working for them
and with them in the fight against HIV.
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S. Jeyapaul – CHLP 2008-09
What inspired me to join CHLP?
The information given above is the major reason for me to live. In 2001, personally I
made a strong commitment to support children affected by HIV AIDS in India to the best
possible means and ways.
I was then a business man along with my brother and my friends, but I decided to quit
myself from the business and pursued MS (NGO) management. I completed my degree
and landed up with a job in Rural Innovations Network.
Though I was working with RIN, deep in my heart my desire was to support children. I
started visiting many websites related to children and HIV AIDS, learnt the burden of
HIV AIDS upon children and child headed families. In my self interest, I started
subscribing A to Z of all publications, brochures and booklets from national and
international organizations that work on HIV AIDS through the sites I visit on the web.
I started receiving parcels over parcels all on HIV AIDS to my residence address. My
father and mother started to stare at me, what’s happening to my son? Why such an
interest for him on HIV AIDS all of a sudden?, but they never questioned me or talked
with me about it.
After around 18 months of working with Rural Innovations Network, I gave up and
decided to volunteer with Indian Network for People living with HIV AIDS (INP+) in
Chennai. I got to know about INP+ through my well wisher and mentor for life Mr. Jacob
Varghese. Only then I started focusing myself and started understanding lives of friends
living with HIV AIDS and about their families. I got my Job with INP+ as a miracle. It is
definitely a miracle because a national organization giving the position of Project
Manager to me with no health or medical background nor prior experience on HIV AIDS.
And that “Positive Living Center” project is the first pilot project at grass root level for
INP+.
Positive Living center is a comprehensive project that aims to address prevention,
treatment and care and support needs of people living with HIV and their families in the
HIV high prevalent district Namakkal by establishing taluk level centers.
It was there through this project in Namakkal; I started witnessing with my own eyes and
started experiencing the lives of children living with HIV and those families situation of
hopelessness and bleak future of their children. I started realizing there are so many other
issues beyond the scope of the project that made me to get passionate about working with
children affected by HIV AIDS. Later I joined World Vision India and then PWN+,
whenever and wherever possible I started pushing the agenda of children in to
organizations that I came in touch with.
Though there is passion, experience of working with people living with HIV groups and
families at the grass root level, I still felt there is something missing in me that I need to
learn. I found the gap and linkage between HIV AIDS programs by government and the
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S. Jeyapaul – CHLP 2008-09
public health system on one hand; on the other hand, with so much of resources and
effort put on targeted interventions and prevention programs the prevalence rate is always
on the rise.
It was then, I strongly felt the urge to learn from experts in public health and improve my
skills and knowledge when I wanted to do engage directly at the field level. And that led
me to apply for CHLP which helped me exactly at the time of burning out on my job.
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S. Jeyapaul – CHLP 2008-09
My expressions of 5 week Orientation program of CHLP at CHC
Personally, the 5 week break from my regular work and commitments waived away the
burn-out situation I was facing in my work life. I sincerely thank the members of
interview panel for having mercy on me to select and enabled me to have this break.
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Inner Change. The 5 weeks were not just about knowledge, but more about an
inner change. I am a witness, right from day one, when I was observing each
facilitators and staff, I could experience and learn the humbleness and ready to
serve attitude to every one of us. I was moved by this, and am in the process of
adapting myself to that kind of character
Availability. I would like to thank from my heart on the availability of each
facilitator, coordinators and staff to clarify our doubts ranging from silly to tough
ones. I was so glad, when everyone openly agreed that all are in confusion like me
in addressing the public health situation in India.
Learning. Learning. Learning. Introduction of participants and facilitators,
Introduction of each fellows to new facilitators, going around the departments in
CHC, games and sessions at CHLP, field visits at Hanur, Hospet and Raichur,
meeting activists, professionals, staying at Holy Cross convent, discussions and
chat with fellows were all packed with LEARNING LEARNING LEARNING.
Glad to be part of this type of orientation.
Remembering Names and Books. I was overwhelmed by the way Dr. Ravi, Dr.
Thelma, Dr. Rakhal, Mr. Premdoss, Dr. Sukanya and other facilitators mention
names of people and names of books and authors. I felt am so weak in my
memory as I couldn’t even remember some of my classmates names in school and
college.
Commitment with Community. Every one including the fellows with me
expressed their commitment to the community. Often we are taken up by the
systems and work pressure, but one thing I learnt very strongly is that everyone
has a deeper meaningful commitment and passion for the community.
Seeing is Believing. It was all knowledge when we listened to stories and
situations in the training hall, but all that knowledge transformed to experience
when we had our field visits. It breaks our heart and increases the commitment
and passion when we face the realities of lives of the oppressed and challenges
they face in life.
Inputs from Experts. It is impossible to get inputs from all top experts in
different areas of health. CHLP breaks that and made it possible to get expert
people to provide inputs to the fellows. And the most exciting thing is that all of
the experts can be met in one point (CHC) and all of them are part of People’s
Health Movement (PHM). I am glad that I am now part of such a great movement
for People’s Health.
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S. Jeyapaul – CHLP 2008-09
My objectives for the 9 months Community Health Learning Program
1. To learn various intervention model programs from selected NGOs and Activists
working on children issues on a rights-based approach
2. To network with many Govt and Non-Govt organisations working on children
issues
3. To understand and analyse Orphans and Vulnerable Children (OVC) policy for
India and compare on program implementation at state and national level
4. To develop a child-friendly story-booklet on community health approach for
children
5. Build a resource library of books, reports and publications related to various
children programs including HIV AIDS that would help organisations and people
who work with children and HIV AIDS
In order to continually work on these issues, I also understand I need to learn and sharpen
some skills with in myself. To improve on my personal skills;
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in developing position/status papers of Govt Programs
in writing to journals and understanding national and international journals
on creating cartoons for social issues
Learn ‘epi-info’ software and analytical skills
Things to focus on my three month final project is
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to review the Orphans and Vulnerable Children (OVC) policy
develop status/position papers as an evidence for collective advocacy
To form an Advocacy Collective of Individuals and Organisations concerned on
children affected by HIV AIDS
To document Govt Schemes and Programs aimed at children at Tamilnadu and
Kerala state level and National level
To share the document with National and State level organisations working with
children and HIV AIDS
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S. Jeyapaul – CHLP 2008-09
What I did in the past 9 months in line with the objectives set
To learn various intervention model programs from selected NGOs and Activists working
on children issues on a rights-based approach
THE School
Dr. Suchitra, a humble, committed person in improving the lives of children through THE
School, Krishnan Foundation in Chennai. Thanks to Dr. Rakhal for introducing this
person to me in the fellowship. She has tremendous experience of over 13 years working
in the areas of child counseling, child participation and more specifically in child to child
approaches in the area of health.
I met her only once, but she made the meeting so wonderful that I felt as if I have known
her for years. In spite of her daughter’s ill health, she spent over two hours early in the
morning sharing all her experiences and guiding me through my areas of interest.
One more interesting thing I learnt is about THE school. The philosophy of children’s
education and growth happening close to the nature, another interesting thing was that till
8th standard there is no marks and grades in this school. Children are given freedom of
expression and to walk in truth in the pathless world.
One of the strong points that came from this expert is that life skills education as a stand
alone intervention cannot address children’s needs or issues. When our discussion started
focusing on engaging children affected by HIV AIDS to support other children affected
by HIV AIDS in a community, she shared her insight on child to child approaches that
she does among govt school children in selected villages near Chennai.
Learn – Do – Teach is the principle behind developing children to encourage other
children. She also assured that she will be able to support in developing practical day to
day life needs training module for children that includes SKILL – Reflective Components
– Evocative Exercises. In her experience, she explained that life skills education as a
stand alone exercise may not help children in difficult circumstances.
The key learning that I take from THE School is the Child to Child approach. It is a
practical approach that empowers children and enables them to prove their ability to
convey any type of message to their peers. I believe it is a vital component in addressing
concerns of children affected by HIV and AIDS.
Balamandir
On July 11th 2008, I had a meeting with Dr. Maya Gaitonde at Balamandir. She and her
colleagues shared that “Sometimes care homes are luxury for children that are with fan,
light and access to good water”. The reason for their statement is that children in the
home, when they go back to their residences during long holidays couldn’t adjust to live
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in the community. They look down on their widow and destitute mother and decide to
come back to the home even before the holidays gets over. At Balamandir, there is
network developed among parents to share the development of children both in terms of
education, moral values and behaviours. Balamandir, a highly respected organization in
Chennai is over 25 years old with rich experience of supporting thousands of children and
their families.
My key learning from Balamandir, is the relationship building among the parents and
participation in development of the children. Understanding parents’ expectations and
behaviors of children is so important to build families and communities with values.
Santhosh Siruvar Maiyam, Melur
In the month of August 18th to 22nd, I spent 5 days in Melur Taluk, Madurai Dist,
understanding more about the project goals, staffs who are women living with HIV
themselves except a social worker and was able to observe some of the issues in the taluk
related to the work on HIV and its impact on children.
The project has reached to more than 180 children and support services facilitated
through the project has encouraged positive living among children affected by HIV. This
comprehensive model has also facilitated positive response from the local authorities and
stakeholders towards support for children affected by HIV. It focuses more in facilitating
access to essential services like education, treatment and social welfare.
Santhosh Siruvar Maiyam is a child-focussed center in Melur Taluk of Madurai district in
tamilnadu. This center is initiated by Positive Women Network (PWN+) with the support
of UNICEF with a goal to have sustained the comprehensive community and home based
care model program “Santhosh Siruvar mayam” for children affected by HIV in Madurai
district.
The Goal of the project is,
To have sustained the comprehensive community and home based care model
program “Santhosh Siruvar mayam” for children affected by HIV in Madurai
district by strengthening Madurai District PWN+.
Major Activities of the project are;
Formation and strengthening Community based Childcare Committee
In order to strengthen the community response to the issues affecting children, the
community based advocacy team from the “Community based Childcare Committee”
were formed comprising local panchayat leaders, religious leaders, SHG leaders, school
authorities, children and parents, including affected families, in two villages and one
committee at the taluk level.
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S. Jeyapaul – CHLP 2008-09
In their previous phase, the experiences have revealed that women and children are not
comfortable to reveal their status to their community members due to fear of being
discriminated by formation of children advisory committee at the village level for
children affected by HIV. So in this phase it has been proposed that the committee will be
formed to focus on issues that affect all children, like education, health and later HIV will
be included as one component. Simultaneously sensitization programmes and information
sharing on HIV/AIDS will be organized for all the members of this committee which will
be facilitated by the WLHAs and some of the members of the “Community based
Childcare Committee” in that area. “Community based Childcare Committee” will meet
once in a quarter to address the needs of children identified by the committee. This will
be done by networking with the relevant departments working in the region.
At the Melur Taluk level and village level where
ever child care committee is formed, comics
campaign by children were planned to be
organized where children will make comics on
existing issues and will campaign at the taluk
level to encourage debates and discussions
among the audience to create a supportive
environment for Children affected by
HIV/AIDS.
Support for formal education and nutrition of the children in the community
There is a direct support of education support for 100 children and 50 children for
nutrition which is continuing now and expected to do till end of the project. During this
phase, Santhosh Siruvar Maiyam and the Madurai District level PWN+ have planned to
focus more in generating support from the community and other donors and NGOs
locally to sustain these efforts. In this phase efforts were made to source private sponsors
to ensure that the educational support facilitated through the project will last till the child
completes a certain minimum level of education. The project is also focusing to advocate
with the district authorities to prioritise support to children from poor affected families
for educational support (under the
schemes that are currently being
implemented).
Nutritional provisions under the ICDS
and mid day meal scheme are to be
ensured for all children as identified
above through advocacy and
sensitization of stakeholders like local
leaders/religious leaders/teachers and
community workers like Anganwadi
workers under the government scheme.
But the field workers are finding it
tough to negotiate with certain staffs of
ICDS and other government schemes.
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Medical care referrals and linkages
Networking and linkages with the district medical hospitals and care centers are
strengthened to facilitate better care and support services for children who are in need of
specialized care and treatment. A Qualitative Survey done by UNICEF in four villages of
Melur block, has also listed several government schemes that would benefit women and
children, these schemes would be made accessible in this phase by the outreach workers
and the volunteers.
The total number of affected families that have been reached through the program are
around 120 (with 180 children) from various blocks and villages of Melur Taluk. Many
women were willing to volunteer their time and share the information to other affected
members in their own community. Hence these women were recruited as volunteers in
the community and supported by the outreach workers. Volunteers were encouraged
through training programs, gifts and honorarium to support more children access schemes
from government.
Organizing Peer group meetings at the center
Peer group meetings are organized for children who are affected by HIV within the age
limit of 0-8 years. This is organized at the center in Melur. In order to prevent the center
being identified as center only for HIV AIDS affected children, community children were
also provided with services in areas of health checkup, life skills education and
educational support. Around 50 community children benefited through these programs.
There have been no specific programmes enabling these children cope with the infection.
In this phase, peer group meetings were planned in order to encourage support among
them and also provide information on positive living. This is organized on a monthly
basis for children between the age group of 8-11 years and 12-15 years.
Life skills education
Two groups of children were formed at the village level with representation of children
also from the general community. Each group has around 15-20 children and between the
ages of 12-14 years. The Life skills tool kit developed by FHI is used and the LSE
meetings are organized twice a month.
Building awareness and capacity building of parents and caregivers of children
orphaned by HIV in the district
In order to increase the awareness for the parents on HIV; sensitization cum training
workshops are conducted especially to increase the capacities of the affected families to
help the child in coping with the situation, in accessing the services and also in accessing
the entitlements for the children and future planning for orphan children. Support was
also taken from legal aid centers and professionals to arrive at the right form of
succession planning for these children, which is relevant and applicable in each state.
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S. Jeyapaul – CHLP 2008-09
Special support group meetings are organized for mothers to encourage disclosure within
families, promote treatment adherence and better care services for children who are on
ARV treatment.
Taluk and District Level Advocacy on CAHA issues
Advocacy meetings are organized at Melur taluk and Madurai district to advocate for the
issues of the children affected by HIV. These activities are in the plan but yet to be done.
At the taluk level, 30 members will be invited with representations from the local
administration, school authorities; self help groups. Two meetings are under the plan to
be organized in this phase and these meetings will be organized to coincide with
prominent days listed below.
At the district level, around 50 members will be participating in the advocacy meeting to
advocate for the issues. One meeting will be organized at the end of the year.
Sensitisation programs will be conducted also on other prominent days like:
• Children’s Day
• World Aids Day
• Women’s day
• Candle light memorial
Organising mothers as self-help groups and access resources from Tamilnadu women
development corporation
One of the pressing needs of Women living with HIV is the economic support, women’s
health and their children’s health are deteriorated due to lack of money towards basic
livelihood. Hence to promote health of children and their mothers, self help groups are
planned to be formed. Self-help group formation training and maintenance of books and
accounts, opening up bank accounts and accessing revolving fund and economic
development fund for businesses were planned in near future.
Mobilising women as volunteers
It was widely accepted and observed that Women living with HIV when given some
responsibility as a job and provided with guidance, it helps them in building confidence
for their life. Volunteers were selected from selected village to work for the community
based programs, these volunteers are supported by each outreach workers to help them
access remote villages and also in organizing community based programs.
In my experience on those days at Melur, I observed that people at all levels have some
knowledge of HIV AIDS but the issue is the sensitivity to the issue. In an instance, the
headmaster of a government school publicly pointed out an orphan child studying in his
school saying “your parents died of AIDS”, when the boy was trying to hide that fact and
trying to live as normal as other children, such instances create mental stress and
loneliness among children.
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While I was interacting with the staffs there, mothers living with HIV who are unknown
to me, shed their tears and share their concerns to me of how their children are ill-treated
in orphanages, “If my child is tortured when I am alive, what would be the condition
when I die”.
Her issue is that her boy child, who is tested positive got admission in a orphanage home
that is run exclusively for HIV positive children 70 kms away from her residence. Her
child, came back to her home once when she visited the orphanage to see her son. The
boy cried and shared how he was beaten and ill-treated for some mischief he did.
Orphanages are started with good intentions, but as the days go by many do not adhere to
the initial interest and care.
Another fact that I observed and sometimes shared is that women who work as (including
WLHA) field level workers lose the drive to actively reach out and support children after
witnessing problems over problems that are unanswered. Staff shared sometimes we feel
that we are just reaching out to more children but the situation is not much changed
except for the hope that there are people and a center to care for those affected by HIV
AIDS.
Over all this, the government staffs who work as Integrated counseling and testing center
(ICTC) Counselors, harass women living with HIV mentally and sexually. Some women
living with HIV shared that because we are HIV positive the men in the society always
look at us only as bad women and they don’t hesitate to approach us with a thought we
should be female sex workers. The stigma and understanding of the community need to
change first for us to live a life with dignity.
On day 4 of my visit, there was a support group meeting for mothers of children affected
by HIV AIDS, almost all of the mother’s care is about marriage of their sons and
daughters. Though their son is HIV positive or not, they want to see their weddings
before they die. There are many child marriages happening among families affected by
HIV AIDS in Madurai as well as in other high prevalent districts. Sometimes, though the
children are negative their parent’s HIV status stands as a sign of shame that stops their
weddings. In a village, three orphan girls at 19, 16 and 14 are taken care by their uncle.
This kind and good hearted man, wanted to get the eldest girl child to get married, but
when the boy’s family got to know the status of the dead parents of that child through a
local community member, the wedding was stopped.
Another important matter that the mothers were curious is about the when will the drug
will come that will cure HIV. They also expressed how they could get updated on the
progress of such researches?
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Bangalore Orphans and Vulnerable Children Project
World Vision India
World Vision India has a focused project among orphans and vulnerable children in the
city of Bangalore at three target wards. It was perfectly a community based approach
where the children from the community were also involved in the project though the
project by itself sounds to OVC and Children affected by HIV AIDS.
The Project Goal is to “Mitigate the impact of HIV and AIDS among the OVC aged 0 to
18 yrs in Bangalore city.” With the following outcome objectives.
Outcome 1: Reduce vulnerability to HIV among OVC aged 0 -18 yrs
Outcome 2: Utilization of care and support services to OVC and PLHIV.
Outcome 3: Reduce stigma and discrimination towards PLHIV and OVC
The UNAIDS working group on definitions2 has defined the term orphan to refer to a
“Child below the age of 18 who has lost one or both parents or lives in a household with
an adult death (age 18-59 years) in past 12 months or is living outside of family care. 3”
The concept of vulnerability is a complex construct and may include children who are
destitute from caused other than AIDS.
World Vision defines
Orphans as children below 18 years of age who have lost a mother, a father, or both
parents to any cause4.
Vulnerable children are: Children whose parents are chronically ill. These children are
often even more vulnerable than orphans because they are coping with the psychosocial
burden of watching a parent wither and the economic burdens of reduced household
productivity and income and increased health care expenses
Children living in households that have taken in orphans. When a household absorbs
orphans, existing household resources must be spread more thinly among all children in
the household.
Other children the community identifies as most vulnerable, using criteria developed
jointly by the community and World Vision staff. One of the critical criteria will be the
poverty level of the household. In South Asia, these children may include children in
2 Report on the Technical Consultation on Indicators Development for Children Orphaned and Made Vulnerable by
HIV/AIDS, Gaborone, 2-4 April 2003
3 Children living outside of family care are taken to include: homeless-street children; children in institutions; and
children living in other country specific settings such as on commercial farms, in brothels, in mining areas, in the
military forces, etc.
4 ADP Toolkit for HIV/AIDS Programming – South Asia Edition, 2005
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extremely difficult circumstances, such as street children, child labourers, and the
children of sex workers.
Prevention efforts were more focused with the children in the community including
orphans and vulnerable children. The various methods used under prevention strategy
included recreation, exposure visits, PPTCT, Life Skills Education, community awareness
programs among women, youth and school children. During the project period, over
14000 community members were reached through various prevention activities
mentioned above.
During my visit, in one of the children’s group meeting, there were discussions on how
Life Skills Education has helped them?. It was observed that children not just at
knowledge level but also have skills to prevent abuse, stress and HIV through life skills
education. Children have learnt to utilize their skills very positively and their attitudes
towards people living with HIV and their children were very positive and welcoming.
When asked about what benefits they see being part of LSE group?, Children expressed
“We learnt we are able and equipped to solve some of our problems”
“We can protect ourselves from abuse and HIV”
“We learnt we need to think alternatives before we make decisions”
“Initially we thought HIV and AIDS are same, but now we know the difference and will
also care for those affected by HIV AIDS”
“We learnt Communication skills and skills to cope up with emotions and now we are self
confident…”
Some of the key project components that I observed and understood are;
Drop-In Centers
Drop In Centers located in Sriramapuram and Flower garden were providing services for
565 orphans and vulnerable children that includes both children living with HIV and
children affected by HIV AIDS and 375 parents living with HIV. Drop in Centers have
helped the team as well as the community to be in regular touch which facilitated not just
in providing services but also in sensitizing the community on HIV AIDS and to provide
a supportive environment for families living with HIV AIDS in the project sites.
Counseling
Counseling and follow up services were provided effectively at the Drop-In Centers by
counselor and community volunteers. The decision to select people living with HIV as
community volunteers, selection and roles were well defined that has helped staff to
reach out to over 295 families spread out around Bangalore City.
Support Group meetings for PLHIV
At the drop in centers the staff regularly organize support group meetings in partnership
with the community based networks and organisations. These meetings help PLHIV to
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S. Jeyapaul – CHLP 2008-09
relate and see other PLHIV living life with dignity and quality that builds their selfesteem and confidence in life.
Management of Opportunistic Infections
Initially the project has appointed physicians to provide out-patient clinical care to people
living with HIV in providing treatment for opportunistic infections and management of
HIV. Later, this service was brought down to provision of Opportunistic Infections drugs
and re-imbursement of drug bills. And since the government services are available, the
project volunteers refer the clients to government health centers.
Educational Assistance for affected children
This is one of the most crucial and pressing need, that I have witnessed of the PLHIV
community. The project has very well addressed this component in supporting affected
families to continue their children’s education in schools and colleges by providing
educational assistance to children of families affected and poor due to HIV AIDS.
But In spite of this I also noticed that around 15 children are at home out of which 9 girl
children are at home. This shows how parents doesn’t want their girl children to study
more and wanted them to be get married. Still the issue of HIV positive children at
school is the major concern everywhere, because most of the children’s status are not
revealed in school. But these children end up taking many leaves by falling sick often.
This problem still persists everywhere (Madurai, Cochin, Bangalore and Chennai) I have
visited.
Nutritional Assistance
Another important need that the project addresses in improving the health status of
parents and children is the nutritional assistance. Discussions with parents living with
HIV revealed that the nutritional support extended by the project has helped them at the
right time to save their lives while on drugs.
Economic Development Assistance(EDA)
52 families of OVC were provided with Economic Development Assistance from the
project, which supported 84 children. The vocational skill building programs and the
assistance provided has substantially improved the quality of life of certain families. One
of the EDA beneficiary who runs a “mobile iron shop” is able to live life with dignity and
able to earn nearly Rs. 6000 per month with a simple support of Rs. 6,000 for the mobile
4 wheel trolley and brass iron box. Since the person had prior experience in this business
and hard work of just 4 months has helped him achieve this. This program component
not just improves the economic standard but addresses the issues around psychosocial
support, educational support of children, dignified life, health and housing of parents and
their children affected by HIV AIDS.
Home Visits
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S. Jeyapaul – CHLP 2008-09
World Vision India acknowledges and follows the SAARC regional framework for the
Protection, Care and Support of children affected by HIV AIDS that Promote family- and
community-based alternative care for children affected by HIV AIDS, and ensure that
institutions are not used as a substitute for family care, or used to gain access to education
and other essential services. Hence a focussed attention was provided that children are
not just put in institutions by the parents, but essential support services and education is
provided for parents on the best family care and environment verses institutions.
“Myself, my brother and my mother, all are HIV positive, but World Vision has
supported every one in my family to stay healthy and continue my studies”
– 16 years old girl living with HIV
“I want to talk openly to my sister but I am not able to as she doesn’t know her status, but
I know my mother’s status. My sister is living with HIV and I want to support her”
–Sri, 16 years old boy affected by HIV
I also saw an endline survey study shows that stigma and discrimination are still
prevalent in the community. Over 60% of the respondents has shown negative attitude
towards people living with HIV AIDS and their families. The project is now consciously
looking at this issue and are developed appropriate strategies that have worked in other
parts of the country and even other countries to be implemented that an enabling
environment is created for OVC and their families.
Strengthening PLHA Networks
Support Group Meetings and Capacity building programs were found to be the two key
strategies planned in strengthening PLHA Networks. The support group meetings were
focussed in healthy nutritional diets, managing opportunistic infections, motivating to
form savings groups and in strengthening relationships among members and members in
the local community. This has found to be useful for the participating members but the
goal of strengthening the network towards advocating for issues affecting their families
including children.
Channels of Hope
A unique program developed by a HIV positive church pastor and his team in south
Africa. Channels of Hope aimed at Church leaders provides basic knowledge and helps
the participants to reduce negative attitude towards
people living with HIV AIDS. This has worked well
in African countries where majority are Christian
population. Now World vision India also
implements these with Indian church pastors so as
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S. Jeyapaul – CHLP 2008-09
to prepare the congregation and the leaders to accept people living with HIV and not
merely codemn them as sinners.
In the city it has impacted the congregation and the leaders to respond positively to the
increasing concerns of HIV prevalence and needs of people living with HIV AIDS.
Church Leaders had started speaking about it in the Pulpit Ministry; it was been taken up
as one of the prayer concerns for the city. Pastor of Methodist Church in Koramangala
added that during the first week of December they were planning to have a week
dedicated on awareness on HIV. This is a major change brought by Channels of Hope in
one of the mainline churches in Bangalore.
One independent church pastor is actively visiting people living with HIV AIDS at their
homes and are praying for them at their church. There are church members living with
HIV AIDS who are referred regularly to the project for follow-up and some have become
community volunteers of the project.
Capacity Building of PLHIV/OVCs/Community Volunteers
Days of commemoration are best utilized to be as capacity building programs for PLHIV,
OVCs and Community volunteers. Family Camp and Children Camp has empowered
children and their parents in self-confidence and relationships.
Bangalore HIV AIDS Forum
Bangalore HIV AIDS Forum, is formed to advocate the concerns of HIV AIDS in
Bangalore City with the involvement of over 25 NGOs that includes Bangalore OVC
Project of World Vision. This is an excellent opportunity and platform to include the
agenda of raising the concerns and needs of children living with HIV and affected by
HIV AIDS for the project.
Challenges
Some of the challenges faced during the implementation of the project were expressed by
the field level team,
• Sensitizing parents to send children for Life Skills Education was a major
challenge
• Since almost all of the staff were women in Srirampuram DIC, bringing in boys
for LSE was found to be difficult at initial stages
• Eve - teasing by community youth was a major challenge in implementing
interventions at the community level.
Issue of Foster parents – a complete orphan +Ve child under the care of a relative,
nutrition and education support is provided, but we are not sure whether it reaches the
child. Foster parents do not care for HIV+Ve child on taking them to hospitals for ARV
or CD4 countor any other OIs. They don’t even give 1 rupee for him to make a call to me
– community volunteer
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S. Jeyapaul – CHLP 2008-09
Another major issue was the ability of adolescent children to see life beyond their current
status. The impact to HIV AIDS is so strong that they are able to see themselves only as
simple day to day workers to bring in money at the earliest to home than do higher
studies and then do great things for the family. I would say the grown up kids are “Living
for Today with No dreams”.
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S. Jeyapaul – CHLP 2008-09
Trainings that I participated and facilitated (some) during the fellowship
Life Skills Education
Life skills education training in HIV/AIDS was organized for four days for alliance
partners at Trichy. Having previous experience on attending and implementing life skills
in namakkal, this training provided me a space to learn and even train the representatives
from the non government organizations.
In addition to the training, interaction with the NGO representatives revealed the impact
HIV has on children and widows, The stigma is so high that even the representatives are
mocked as AIDS patient by the community .They also expressed that some of the
colleagues had problems because there was a rumor spread that those engaged in the
work on HIV/AIDS were sexually promiscuous that affected their field visits.
Life Skills Education for children helps children in developing their skills on knowing
about themselves, communication skills, decision making skills, coping with emotions,
preventing and living with HIV and in setting goals for life.
Since the sessions with children are activity and games oriented, children enjoy these
sessions and naturally develop their skills in the above said areas. This is very vital in the
approaches adapted to work with children in vulnerable conditions and those orphaned by
HIV AIDS.
Children Parliament
It has been my passion and interest to empower children to voice their concerns that
affect them. From my experience working with networks of people living with HIV, I
have learnt that the representative and advocacy of issues is very powerful when it is
directly represented by the people who are affected by it.
Personally from the training I have learnt one approach to involve children and ensuring
child participation. This approach also benefits children to represent and advocate issues
better. I had the opportunity only on the orientation of the concept of children parliament,
but I personally look forward to participate in the one week training program where the
entire concept of Children Parliament from formation, operation and advocacy will be
explored.
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S. Jeyapaul – CHLP 2008-09
Disclosure Workshop for mothers living with HIV AIDS
This has been a major issue that is affecting
many women to disclose their status to their
own children. In the discussion held in
madurai district and my previous experience
working in namakkal and kerala, most of the
women living with HIV expressed that
disclosure is very essential but the fear of
being discriminated by their own children
affects them to take the initiative to disclose.
In Madurai for around 17 mothers living with HIV, two day training was organsied with
support from UNICEF consultatnt who facilitated sessions.
The Women expressed their concerns in disclosing;
• Fear of being discriminated or perceived as bad woman by their own child
• Fear that children may disclose their status to other in the community
• Stigma about the disease
• Lack of family and relatives support.
Though there are these fears, at a point everybody agreed that disclosure is essential and
they needed support to disclose the status to their children.
In August 7th and 8th 2008, I attended two days workshop for Caretakers of Children
living with HIV AIDS at Cochin organised by Kerala Positive Women Network
(KPWN+).
Some of the major issues shared by the mothers gathered there is of disclosing the HIV
status of the mother as well as the child; they also expressed that there is lack of moral
support from family and community for women living with HIV and the stigma is so high
in that high literate state that some women need to vacate their houses and settle in
different town without disclosing their status. I observed that such caretakers education
sessions should happen regularly, so that that would help them prepare themselves to
disclose their HIV status to their children, give better care for HIV positive children.
These trainings helped me understand that once a person makes a decision the role of the
social worker, or counselor should be at the support level. One successful case study was
that of one woman who had disclosed her status to child and with the positive response
from the children other women in the group are motivated to attempt disclosure with their
children. At the same time, It is also important that children also are prepared with the
basic information on HIV and AIDS and treatment with life after HIV, which will help
them accept the status better.
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S. Jeyapaul – CHLP 2008-09
Comic Workshop in New Delhi – World Comics
The three day training was a wonderful experience. During my fellowship programme, I
have been exposed to different approaches to work with children, one life skills, second
children parliament and the last one comic workshop. This workshop also helped me to
use my personal skill in drawing towards advocacy related work.
In the comic workshop, I observed children learnt the process easily because it is one that
involves colours and funny figures that children learn easily. Using this approach as an
effective tool for advocacy was one that impressed me very much. Almost all the
drawings depicted what children experience in their day to day life situation. One
instance is from a child from Manipur who depicted picture on stigma and discrimination
faced from relatives because of the HIV status. This showed the extent of impact children
are experiencing due to HIV.
(insert comic that was developed)
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S. Jeyapaul – CHLP 2008-09
Advocacy Events that I participated
At National Project Director’s Conference
In July 14th – 16th, 2008 Positive Women Network (PWN+) organized a National level
Women living with HIV AIDS Workshop in Chennai where around 25 women living
with HIV AIDS from at least 9 states of India participated. The objective of the workshop
is “Looking back on achievements and failures and re-energizing for proactive actions”.
As the workshop was coming for a closure on 16th, the leaders of the network were
actually promised to be visited by the Director General of NACO. But since at last
minute they cancelled the plan, all the 25 women living with HIV and some of us went to
meet the Director General who came down to Chennai at the same time to attend the
three days Project Directors Conference organised in a star hotel in Mahabalipuram,
Chennai.
The team reached there during the lunch time and demanded the needs of women and
children affected by HIV and AIDS. The DG, NACO and some Project directors were
upset about the way the group entered the premises, but remembering the need to involve
people living with HIV and the commitment given on GIPA, they rearranged their
schedule and gave ten minutes for the leaders to share their concerns and needs to all the
project directors present there. DG, NACO promised to support the women’s network
with specialized drop-in centers for women and children in 59 districts of India.
Key Learning:
-
-
It was a sudden plan to approach the DG, NACO and the project directors at a
conference with out proper agenda or demands
Each women started expressing different things once the DG was available to
listen to them but there was not a concrete demands were set in
But fortunately, DG agreed openly to support PWN+ and its district and state
level networks to set up Drop in Centers in the list of districts they would submit
to NACO
Follow up action from PWN+ and its member networks is absent
26
S. Jeyapaul – CHLP 2008-09
3rd National Consultation of women livign with HIV AIDS in Delhi
A decade of Women’s voices and positive thinking
Hon. Minister for Labour Mr. Oscar
Fernandes, presided the National Women’s
Consultation organized by Positive Women
Network (PWN+) on the occation of the
World AIDS Day, to address the increasing
need for prevention, treatment and care of
women living with HIV and their children. He
stressed that National Council on AIDS
headed by the Prime Minister of India, is
giving importance to the issues faced by
women living with HIV AIDS and the parliamentarian forum is committed to address this
through HIV mainstreaming. This focuses on providing a healthy environment for
women to uphold their rights. He said quality of women living with HIV can be improved
through Yoga and other means of allieviating stress in life along with medical care and
support needs of women.
He also added that together with the support for women living with HIV AIDS, it is also
important to ensure that no more new born becomes HIV positive. He also added that
when women are given correct and complete information it would reach maximum
number of people in the country. He pledged the complete support for the efforts of
positive women network who have started their signature campaign on ‘prevention for
women’.
Ms. Anne Sten hammer, Regional Director of UNIFEM encouraged women and
appreciated the vision of Positive women captured in the video released to mark the 10th
year celebration of Positive Women Network. She appreciated that both UNIFEM and
PWN+ were natural partners with the development and upliftment of women being the
center of the core response to HIV and AIDS.
Ms. Anandi Yuvraj, Representative of International Community of women living with
HIV AIDS highlighted the transmission of HIV among married women and wanted the
National AIDS Program to take a proactive role in HIV in marriage initiative led by
UNAIDS, UNIFEM and UNDP. She also highlighted the compromises that happen
towards women’s issues when networks which highlights both men and women’s issue
and strongly emphasized the need for an exclusive space for women living with HIV
within the National Program. She also congratulated the concentrated efforts of PWN+
towards Positive Prevention among Women living with HIV by initiating a signature
campaign today to mark the need for focused prevention with millions of women who are
at risk of acquiring infection from their spouse and their intimate partners who are at high
risk. PWN and its partner networks at state level will have to be involved in designing
meaningful interventions for this initiative. NACO and UNAIDS co-sponsors must
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S. Jeyapaul – CHLP 2008-09
involve them in all their policy and programme developments to demonstrate their
commitment towards GIPA with women living with HIV/AIDS.
Ms. Kousalya, President of PWN+ says, as women living with HIV, every day is a World
AIDS Day for us. 150 Women gathered here have braved floods, blasts and HIV AIDS to
be here from nook and corner of this country to find and raise the common voice to the
issues of women living with HIV AIDS which is a grave concern. As a beginning to an
end, Mr. Oscar Fernandes inaugurated the WE shop, an effort by Positive Women
Network to provide socio-economic empowerment for women living with HIV AIDS.
The demand set in by PWN+ during this consultation was to actively and meaningfully
involve women living with HIV in decision making processes at all levels. NACO agreed
to it, but now PWN+ do not have adequate skilled women to represent for GIPA at
various levels.
First State Level Consultation for Children
at Ernakulam organized by KPWN+
In February 14 and 15, 2009, Kerala Positive Women Network organized a two day state
level consultation for children affected by HIV AIDS at Rajagiri College of Social
Sciences, Ernakulam. Around 25 children from two age groups participated in the
consultation. 9-12 years and 12-15 years were two age groups.
The objective of the consultation were to help children learn the basics of HIV and AIDS
and bring a feeling of togetherness among themselves; and
To enable children to represent the issues that affect them and advocate for better services
and programmes to the stake holders.
The activities for children had sessions on understanding
more about HIV AIDS, improving health, positive living
and setting goals for future. The consultation had lots of
participatory activities,
games, question time,
time to build friendship
with other affected
kids, talent evening
and curious questions
in secret box. Children
enjoyed the two days
consultation and
expressed their desire to have such get together at least
every quarter.
On the second day, various NGO representatives and Director from women and child
development department participated to understand the issues faced by children by
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directly seeing the charts, plans they have made and by interacting directly with the
children. The director of W&C also gave commitments to support KPWN+ for
pioneering its work with children in at least two districts in the next quarter.
ITPC Research Application
In October 2008, there was a call for research and advocacy proposal from International
Treatment Preparedness Coalition (ITPC), I discussed this idea with my mentor for his
views on it. He encouraged me to apply for the same and also assured me of his support
to do the research and analysis of the same. This is the brief of the research question and
justification of why we attempted to try it. Though I applied, unfortunately I didn’t get
through this research project.
Discussion of why you are interested in researching and advocating on these issues, with
reference to the status of HIV prevention and treatment services for women and for children in
your country
Our Key Concerns on this topic that interests us to research and advocate are;
• Women constitute over 40% of HIV infection in the country
• Prevention of Parent to Child Transmission and Targeted Intervention on Commercial
sex workers are the only core prevention strategies for women. The research and
advocacy will focus on increasing HIV prevalence among women in general community
• Increasing trend of HIV among young girls and women and lack of women-friendly
sexual and reproductive health services
• Inadequate palliative care services for women and children
• Lack of provision of second-line ARV
• ARV provision for children are more number oriented and there are no programs over
child counseling and support for children on ART
• No program to reach out of school and specially challenged children on HIV prevention
• There is no data on children living with HIV or affected by HIV at state or national level
• To monitor the status of OVC policy framed by NACO and UNICEF in 2007
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S. Jeyapaul – CHLP 2008-09
Organisations that I networked with during my fellowship
1. The School, Chennai
2. World Vision India, Chennai and Bangalore
3. Kerala Positive Women Network (KPWN+)
4. Santhosh Siruvar Maiyam
5. Karnataka Network of People living with HIV AIDS
6. CHES, Chennai
7. Balamandir, Chennai
8. HUNS, Namakkal
9. CFAR, Chennai and Delhi
10. UNICEF, Chennai and Delhi
11. UNAIDS, Delhi
Understanding OVC Policies in India
In September 2008, Richard Lee from UNAIDS was making a study to ascertain
How does the provision of public goods and services affect the response to Orphaned and
Vulnerable Children (OVC) due to HIV and AIDS?
In this regard, he made a visit to Chennai and luckily I was also a respondent in his
research on the above. This enabled me to get more understanding of HIV AIDS issues
and his report also focused more on Tamilnadu and its services for children orphaned by
HIV AIDS epidemic. This also encouraged me to collect various documents and data
available on OVC policy framework by UNICEF and SAARC. I was also able to read
and understand the National guidelines for Protection, Care and support for children
affected by HIV AIDS.
These policies and guidelines are well developed, but there are still gaps and issues that
are unaddressed at the ground reality. UNICEF and NACO are working on model
projects to implement and monitor how the guidelines given are realized at the grass root
level. There should be mechanisms to monitor the policy implementation through
programs and there should be space to align the policies at every learning level, at least
once in a year.
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S. Jeyapaul – CHLP 2008-09
Building resource library of children related documents and schemes
One of the objective, I set during the initial stages of my fellowship is to build a resource
library of books, reports
and publications related
to various children
programs including HIV
AIDS that would help
organizations and people
who work with children
and HIV AIDS
This idea came up while
discussing with my
mentor Dr. Rakhal in Chennai. I was sharing with him that over the past 5 years of my
work in HIV AIDS and my wife Julie’s work around 9 years, we have collected several
books and PDF documents which are of Training Modules, Information Education
Communciation materials, Research papers, Policy documents, advocacy papers and
links of many organizations working with children and HIV AIDS around the world.
Then he suggested, that why don’t we make those collections to be useful for all those
who want to pursue working with children?. That’s when we decided to build a website
which will have the pool of resources on children and HIV AIDS.
With the support of my friend who is a web-designer, I designed the above page and
developed home page content, but when I was in touch with the webspace service
provider, he alerted me about the copy right issues of these collections of resources. Also
the web space required was also very high and it demanded annual budget of around Rs.
1 lakh plus the maintenance charges. That’s the end, I set aside the idea of web space, but
continued to do the activity to have it in a DVD or CD and provide only to people who
may need it as a collection of resources rather than creating a brand of it.
Following is the home page content of this e-resource center.
---
KIDS and AIDS | e-resource center
Welcome to Kids and AIDS | e-resource center!
Kids and AIDS, e-resource center is an online collection of comprehensive resources on
prevention, treatment, care and support programmes on children and HIV AIDS around
the world. It shares valuable tools that help assess, design, plan, implement and manage
programmes that are of high quality and sustainable in the developing world.
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S. Jeyapaul – CHLP 2008-09
E-resource center fosters sharing of relevant, effective and innovative resources and
constantly update to enhance the delivery of programmes for children living with HIV
AIDS and affected around the world.
Explore! Enrich!! Empower!!!
----
Because my document and my focus are completely on children and HIV AIDS, it
doesn’t mean that I see the issues of children affected by HIV AIDS independently. I
have learnt well that children in a community need to be protected and supported in
social, economical, cultural, political and environmental areas. But the reason to focus is
that many a times the special needs and issues are unheard, so a special attention is
provided to highlight the concerns amidst other concerns of the community.
This activity is still under preparation, and it needs some more time in arranging the
collected documents and to create a e-library in CD or DVD format with technical
assistance.
Government Schemes for Children in Tamilnadu
This is another area, where I felt there are so many schemes and programs from the
government but the knowledge and information to these are very limited. Hence during
my interim meeting at CHC, I decided to work on this too. I searched on internet and got
some good documents from Tamilnadu government website of various schemes for
people of Tamilnadu.
With the support of a volunteer friend, we are now segregating those schemes for
children. Class 1 to 10, 11 and 12, above 12th and general are the four categories under
which we are collating the government schemes. This activity is in the process and is
expected to complete by March and print 10 sets to be used at grass root level.
Learning from Namakkal visits – January 2009
This Namakkal trip in January was an interesting and turning point in my life. We wanted
to meet with the families and staff members we served during 2003 to 2005, so myself,
my wife Mary Julie and my 1 year 10 months old son John Elijah packed our things and
started our trip to Salem and Namakkal.
Namakkal district that accounts to more than 9000 people living with HIV registered and
accessing the government ART center. Of the people accessing the centre 300 children
living with HIV are benefited through the center.
We visited Salem Government Hospital – ART Center, where one of our ex-colleague is
the ART doctor providing services to around 10,000 PLHA in the district and
neighboring districts.
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S. Jeyapaul – CHLP 2008-09
We also met women living with HIV who were our ex-colleagues in Namakkal when we
worked on Positive Living Center project and learnt about situation of children in the
district. Following are the list of people we met during our voyage to Namakkal and
Salem.
Ms. Prema
Ms. Muthulakshmi
Ms. Rajeshwari
Ms. Amaravathy
Mr. Nackeeran
Ms. Vijayalakshmi
Dr. Arunachalam
Dr. Ramesh
Mr. Karunanidhi
-
VCTC Counselor, Salem
Counselor – Children Project, YWCA Salem
ICTC Counselor, PHC, Erode District
Outreach Worker, HUNS, Namakkal
Board Member, HUNS, Namakkal
Counselor, ART Center
Medical Officer, ART Center, Salem
Medical Officer, ART Center, Namakkal
Board Member, TNNP+
Key observations:
Treatment has been very positive and even could see cases of children in the age group
18 and 19 years. This has encouraged children (especially young adults) for marriage.
Many questions the doctors, that if they can live so long and healthy with ARV, why they
should not be married off?
So this puts a question to us on how to help children, especially issues around informed
consent and issues like marriage and future for children living with HIV AIDS who are in
their adult hood.
Understanding children’s education needs, Salem government hospital and Namakkal
hospital have scheduled children’s ARV treatment day for Saturday, but no specific
programmes or get together is arranged to help children. Staff also reported that when
there is a visit then there is a make up of toys and children activities during that time.
On the day of our visit children also stand in line with the adults for treatment and
receiving ARV drugs. They also go through the process of visiting doctors with the
medical record and collecting medicines.
We were concerned that whether the child knows his or her status and the need for child
counselors at the center as there was no attention or care given for children. The patient
load is very high in both salem and Namakkal, so proper counseling is not ensured.
In Salem, with CIFF programme and partnership working follow-up is made by NGO’s
in the field, while in Namakkal now there are no NGO’s for follow-up, so clients who
come on their own avail treatment. Currently, the district level network in Namakkal
covers few areas, but not all clients are reached.
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S. Jeyapaul – CHLP 2008-09
The death percentage said by the ART Medical officer shocked us that even after taking
ARV it is 10% death rate among those on ART. And people who have not started/or not
on ARV the death percentage is about 13-14 %.
Majority of children who avail treatment is Salem hospital are from the grandparents,
while the turn over of children from Namakkal who are with grandparents are less. The
working hour of the hospital is 8am -12noon and approximately 150 attend the clinic
every day.
From personal experiences and client observation the counselors (who are also women
Living with HIV) expressed in the initial 3 months of ARV treatment if supported with
good nutrition and vitamin B complex tablets of good standard, recovery from side effects
and adaptation to drugs has been found very effective.
Regarding the topic on disclosure, mothers often think the children do not know the HIV,
but children are inquisitive and have previous knowledge of the status before the actual
disclosure.
Community children observation:
In any intervention programme, the community’s culture also needs to be observed:
In vellakalpatti, Rasipuram Taluk, Namakkal a schedule caste village, children are
married of at an early stage. Girls from the HIV affected families have more pressure for
marriage and are married of at an early stage (between 14 to 16 years old). Due to culture
pressures, young girls have eloped away from home and got married. eg two girls who
have just completed 10th std.
Challenges ahead of us:
•
•
•
Proper guidance, counseling and programs are essential for adolescent boys and
girls
Parents pressure on children to get married at an early stage affect their plan and
interest and even resulting in risk conditions like running away from home.
Encourage adolescents to plan through LSE programme and even facilitate a
center for grievances or support for children who are in such difficult conditions.
Psycho-social issues
1. Mother, especially trained peer counselors have found it difficult to express their
status to their own children. The child is also HIV positive and now has recently
started on ARV.
- Rajeshwari.
2. In one instance they have taken the support of another peer counselors and trusted
person of the child in disclosure process. The child has been able to accept and
support towards the mother has been more positive.
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S. Jeyapaul – CHLP 2008-09
- Ganthimathy
3. Fear of stigma has been found less among the women that we have interacted and
family support has helped most of the women to adapt to a healthy and a planned
future.
- Muthulakshmi and Amaravathy
4. Children availing treatment do not have special care or even opportunities to
come together. It has been found shared feeling help cope better, but there are no
opportunities for them in namakkal district.
5. Side effects caused by treatment also affect children, but the sharing between the
mother and child helps them to cope with the stress.
6. Fear of disclosure is very prevalent among mother, but all want to disclose
7. Stigma about HIV is experienced by children only around the age group 0f 14 and
15 years, if proper support mechanisms are available it helps them cope with the
stress easier
Economic issues:
1. HIV does affect the economic condition, but family support helps one cope with
the situation.
Eg. Muthulakshmi’s brother has supported her with land and she could use the
produce of the land to manage the expenses and even her children’s future
Support from family is more seen in rural settings
2. Concerns over children’s education and future is found mostly among parents,
specially among widows
3. Due to poor economic conditions, there is compromises made in putting them in
hostels and Tamil medium schools (where expenses are less)
4. Food style is compromised due to poor economic condition.
Support systems in the district
There are few agencies like Christy factory that provides nutrition support for children in
Namakkal district
Key Issues that affects children living with HIV as expressed by ART Medical officer in
Namakkal are:
1. Children living with HIV under the care of Grandparents and foster parents (relatives) do
not come for center though they are eligible to receive ARV
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S. Jeyapaul – CHLP 2008-09
2. Most of the children are under ART without knowing their HIV status or not prepared for
knowing one’s status
3. No support mechanism for adolescent children to accept their HIV status and move
towards a positive life
4. Supply Chain of Pediatric ARV drugs are often affected. In last 2 years the Adults and
pediatric drugs have been changed 4 times
5. Most children on ART are less than 11 years old and are not much aware of HIV status
but children who are now in teenage and adolescents adamantly deny taking ARV
6. Over 4600 PLHA on ART with 6 counselors and no time for child focused services or
counseling
7. Psychological issues are high among children affected by HIV AIDS
From Mr. Karunanidhi, TNNP+ on his experience of working with children Krishnagiri
District
Over 800 positive children are registered in this district. Even here most of the positive
children are under the care of their grandparents. Here outreach workers are given the
designation of Children Protection Officers at the block level that has elated their dignity
and response to children affected by HIV AIDS.
District Administration is very supportive to the initiatives in the district. Caretakers are
trained on how to care for their positive children, but there is no specific developed
module in that area.
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S. Jeyapaul – CHLP 2008-09
Looking Inward – What did I learn about myself?
When I joined the fellowship, my mental state was that I was deeply troubled in the work
that I was engaged. Many questions ran through my mind of my commitment in social
work and work with children, but later I realized that I have burnt out completely and I
needed a break free from my work.
Thank God and thank CHC that I got through this fellowship. One solid month of
orientation at CHC, though week ends were taking me away from my family and my one
year old beloved baby John, it was the best break I had with inspiring leaders, motivating
sessions, questioning systems and immeasurable learning to my spirit, soul and body.
The regular introspection of the inner man to use the knowledge and skills with a right
attitude in serving our community is essential for every community health steward.
“The eye see only what the mind know…”
Dr. Ravi, said this and added “many a times we see things in very superficial node but
one needs to go deeper to see things beyond our mind…so the best way is to learn more
and renew your mind”
This really struck me strong, because after having worked in Namakkal, Positive Living
Project for almost three years, I always believed that the work that I do is the best one as
there was no such projects in the district by any other NGOs. The project really got
attention of many working in HIV AIDS Care and support programs and took me to
various platforms and conferences to share our experiences and learning. I think that’s
where knowingly or unknowingly the pride took hold and my eyes could see only what
the mind knew.
Though I have visited many projects, my mind always blocked me from learning from
good and bad experiences of other projects and people in community work. This has
rooted deep in my mind, but Dr. Ravi’s group learning exercise helped me to unleash my
thoughts and strong holds of my mind and helped me to renew and revive my spirit to
focus once again on the barely reached services for children.
Many questions kept coming to my mind throughout the learning sessions at CHC. Some
are given here for the benefit of myself and those reading my report.
1. Am I strongly convicted on my vision and add strength to it by all possible
means?
2. Do I walk my talk?
3. How many children and their families affected by HIV AIDS have I really
supported and helped them lead a life with dignity?
4. Do I need to learn more or do I need to start doing with what I have known
already?
5. How much did I unlearn to learn more?
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S. Jeyapaul – CHLP 2008-09
6. What are the things I need to sacrifice to belong to the community?
7. Will there be constant reflection and encouragement to see beyond what I see
now?
8. Do I criticize or critically analyse and reply? – from group lab
9. what are the values you are really following on a day to day basis/
a. sincerity
b. integrity
c. honesty
d. equality
e. simplicity
f. justice
g. truth and genuineness
h. humility
i. compassion
j. openness to listen or dialogue
k. sensitive to nature and people around you
10. What are the values that are still lacking within me?
11. How do I manage my family?
12. Or should I leave all this and take up a good position in any NGO?
13. How much am I self seeking? And how much should I die to self?
Group Learning Experiences
We are conditioned
When Dr. Ravi, revealed this learning that we always share only what our MIND thinks
and very rarely on what our HEART feels. How true it is, that we share only our thoughts
about a situation and never share the feelings we have upon certain issues that has
affected our heart. Every team must have a value framework and from time to time we
need to check whether we are really there in the values we have set in. And prepare
ourselves to share what our HEART feels.
We are not able to share negative or things that we feel sad about
Two reasons that we are not able to share our negative feelings are 1. we are conditioned
in life like that and 2. we do not have a trustful environment to share. I often personally
felt that I am mixed with both these factors. I am also conditioned, may be as a gender
role that as a man I shouldn’t cry or express my sad feelings which would put my dignity
down and sometimes when I have felt that I should share, the environment wasn’t that
trustful to express my feelings and even cry when I want to.
I can personally count in my life after 18 years of age, how many times I have really
cried about certain things that have affected me. As I type this, I also remember while I
was doing my class 10, when I cried watching “Anjali”, a tamil movie when a child dies
in a family of love, joy and affection. In 2006, after marriage again I cried one night
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S. Jeyapaul – CHLP 2008-09
watching the same movie in television. The environment was so private that I was able to
cry aloud ventilating out my feelings that was so twined within my heart for children.
Share your negative feelings, more positively
This is still another challenging area and a lot of practice that I need to share my negative
feelings, more positively. I have seen myself, expressing my negative feelings, so sharply
to those who cause it and those around them. I have understood personally that I need
more perseverance to withstand injustice and fight for justice. What I have done many
times is always expressed my anger and frustration and have lost some good friends.
Now I am in the process of learning to share more positively.
You are mentally ill – if you are “CASTE” bound
I acknowledge and appreciate such powerful words from Dr. Ravi, “You are mentally ill
– if you are CASTE bound”. I could experience his words in many humiliating instances
I personally see in the lives of my friends who belonged to dalit community. And during
orientation of CHLP, we also witnessed the same in our field visits to villages in Raichur.
NIMMA – NAMMA Test
People have to experience you in the community as someone belonging to them. For
instance if we say we are a community worker, the community that we work with should
say he/she is OUR person and not the NGO’s staff or person. This is a crucial and strong
lesson that I have learnt, but truly to express sometimes I have had reverse discrimination
for being negative to work among HIV positive people’s networks. But still, its important
for me to be unequal to be equal to all.
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S. Jeyapaul – CHLP 2008-09
Looking Outward – What did I learn about the community?
Go to the people
Live among them
Love them
Learn from them
Start from where they are
Build upon what they know
But of the best leaders,
When the task is accomplished,
The work completed,
The people all remark:
"We have done it ourselves"
Lao Tsu
Lao Tsu wrote this around three thousand years ago. Various translations of it are found
in http://www.scn.org/cmp/modules/emp-go.htm
Go to the people…
It is more so important to Go to the people, while working with children and HIV. In my
personal experience and journey through these projects, the strategies have tried to
address some of the most vivid concerns of children affected by HIV, but there are still
deeper issues that can be well understood only by going to the people to understand and
help them address it.
Going to the people isn’t simply meaning physically being there, but coming/humbling
down from where we are; understand their background, learning their language,
belonging to the community and empathizing alone will help us to progress in the
wellbeing of the community.
Live among them…
Heard and read that two of the interns of CHLP, made this a reality during the fellowship.
Another interesting couple I met are founders of Tribal Health Initiative in Dharmapuri
district. Literally they moved to live among the community members. In my past
experiences, I have gone to the community only as a visitor and monitoring person, but
now I am inspired to live among the community. As this is very crucial to explore and
understand more the day to day issues faced by the community that we want to work
with.
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S. Jeyapaul – CHLP 2008-09
Love them…
I am reminded about what Jesus said in the Bible. The first greatest commandments is to
Love the Lord thy God with all your heart, soul and strength and the second that is
equivalent to it is to Love your neighbor as you love yourself.
I know many of us in the world loves ourselves so much, otherwise we would not like to
eat good food, dress up neatly, learn more and so on. Similarly, we ought to love our
neighbors as we love ourselves is what this poem is also trying to tell us.
It is so crucial that unless I love the children that I want to work with, I would be a
machine delivering services to them and very soon I will get weary and will not be use
for any one.
As we all know a community is comprised of people from different religion, caste,
economical status, education and so on, working among them with love for all is
practically a challenging task. Personally I have experienced when we love all in the
community, some people in the community is not going to be happy about it.
For instance, in my recent visit to a village in Namakkal; to meet children from dalit
community we (myself and my wife) took a women living with HIV who worked as a
field worker earlier in that area. We were so comfortable talking with the children and
their family members as we were meeting them after 4 years. We found many girl
children of HIV Positive parents have got married at very early age (14 to 15 years) and
are with children now. When we were returning we were discussing about this issue and
on our way back, the field worker quoted that this is very common in this (dalit)
community. It was bit demeaning the particular community.
I could personally reflect back, that when I work with children and their families affected
by HIV, I understood that it’s important for me to love unconditionally all the community
members that I work with. And it’s also obvious that we cannot move to the next step in
the poem (Learn from them) unless we throw personal bias and conditioning of our mind.
Learn from them
My past work experience in villages of Namakkal actually gave me lots of insights and
understanding about how HIV AIDS has affected families and the entire community. I
have well learnt I have so much to learn from every member of the community that I long
to work with right from a new born to the oldest person in the community.
There are both negative and positive learning from the community members. For
instance, in my interactions with HIV positive children in Bangalore OVC project of
world vision, a HIV positive girl expressed how she is affected by her handicapped
brother rather than her own HIV status.
She was almost in tears when she said, “I don’t have my father but only my mother who
is HIV positive to support us, we want to do operation for my brother but we are unable
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S. Jeyapaul – CHLP 2008-09
to do it because its very expensive. I don’t worry about HIV or taking ART but only if my
relatives of neighbors come to know my and mother’s status”.
That day I took so much of learning from her, that how HIV interventions and strategies
need to be designed more humane rather than with policies, guidelines and strategies.
Start from where they are and Build upon what they know
50% of my job is completed in the community if I complete all the above steps and reach
to this step of acknowledging that I need to start from where they are.
One experience to quote in starting from where they are and building upon what they
know;
In villupuram, while working with the women living with HIV group in the district,
PWN+ had little unspent money from a donor agency, to use it for Income Generation
purposes of women living with HIV AIDS in the district. We had lots of ideas for the
women, but it didn’t get their attention or interest, then I asked them to share what they
would do if we give them some loan. Two to three of them expressed they would do saree
business. That’s the spark. I worked along with them and developed a plan for a business
unit that would buy and sell sarees and salwars. This business after going through some
challenges and struggles have now received a loan of Rs 3,75,000/- and have also
received a subsidy of Rs. 1,25,000/- from Tamilnadu Women Development Corporation.
13 women living with HIV AIDS are partners in this business unit and is doing well
completely, initiated and managed by women living with HIV AIDS in Villupuram.
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S. Jeyapaul – CHLP 2008-09
Looking Ahead – Where do I go from here?
Towards a community health approach to working with children living
with and affected by HIV and AIDS
Principles to work with Children
- from Joint Learning Initiative for Children Affected by HIV and AIDS (JLICA) report,
February 2009
1.
2.
3.
4.
support children through immediate or extended families and
deliver integrated family-centred services;
strengthen community action to support families; and
address family poverty through national social protection.
- from Policy Framework for Children and AIDS – NACO, UNICEF and Ministry of
Women and Child, India July 2007
1. To create a non stigmatising environment, enabling access by children and young
people to prevention services including complete information and skills to protect
themselves from and reduce their vulnerability to HIV infection;
2. To identify HIV-infected parents and children early, and to provide high quality
treatment and support to prolong and maintain the quality of life, and to ensure
they are able to fulfill their potential and responsibilities;
3. To ensure that affected children – whether HIV positive or not – are not excluded
from or treated differentially by service providers in the public and private sector;
4. To eliminate stigma and discrimination by overcoming myths and misconceptions
in relation to HIV/AIDS, and by implementing regulatory and legal measures to
address discrimination wherever it occurs.
5. To ensure social protection measures are in place to prevent and redress violations
of their rights and entitlements.
From NACO Operational guidelines
The operational guidelines take account of the two broad principles specified in NACP
III:
1. Increasing access to all services for most vulnerable children and strengthening
child protection systems
2. Mainstreaming HIV/AIDS in the existing schemes and programmes for children
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S. Jeyapaul – CHLP 2008-09
Models in line with the Policy Framework of NACO, UNICEF and Min
of Women and Children
Policy Framework for Children and AIDS
Intervention
Models
Santhosh
Siruvar
Maiyam Model
Prevention
services
Life skills
education
Treatment, care
and support
Social
Protection and
Rights
Advocacy and
Addressing
Stigma and
discrimination
Access to other
Government
schemes
1. Support for
formal education
and nutrition of the
children in the
community
Formation and
strengthening
Community based
Childcare
Committee
Taluk and District
Level Advocacy on
CAHA issues
Organising
mothers as selfhelp groups and
access resources
from TNWDC
2. Medical care
referrals and
linkages
3. Organizing Peer
group meetings at
the center
Bangalore
OVC Project
Model
Life Skills
Education
4. Building
awareness and
capacity building
of parents and
caregivers of
children orphaned
by HIV
5. Mobilising
women as
volunteers
1. Drop-In Centers
2. Support Group
meetings for
PLHIV
3. Management of
Opportunistic
Infections
4. Educational
Assistance for
affected children
5. Nutritional
Assistance
6. Economic
Development
Assistance
7. Home Visits
1. Strengthening
PLHA Networks
2. Capacity Building
of PLHIV and
Community
Volunteers
3. Bangalore HIV
AIDS Forum
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S. Jeyapaul – CHLP 2008-09
Gaps Observed
From my field observation, other issues that are unaddressed in the policy and the
intervention models studied are;
-
Child Sexual abuse among children orphaned by HIV and AIDS
Child marriages among affected families especially for girl children
Increase in Child labour where the bread winner of the family is lost
Support in disclosure for parents and children
Understanding the desires of HIV positive children above 16 years to get married
and providing appropriate interventions
Empowering children and providing platforms for them to raise their concerns
Support for grand parents taking care of HIV positive and affected children
Uncertain future for children at grandparents headed households
Poverty at grandparents headed households
Issues of adolescent HIV positive children while knowing their status
Sensitivity on care for children among health care service providers, schools and
other public and private services need to improve
Basic Principles of a model that I would evolve
1. Encourage formation and empowerment of children support groups at the
community
2. Age specific prevention and care and support services
3. Address vulnerable factors (like child abuse, trafficking, child marriages etc)
effectively through coordination
4. Encourage family based care and support services
5. Provide special programs for children living with grand parents
6. Well subsidized economic development program for widows and grand parents
managing children
7. Ensure Government and Private services free from stigma and discrimination
All of the above principles will be addressed with the cross-cutting themes of Child
rights, gender and GIPA
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S. Jeyapaul – CHLP 2008-09
Books, Journals, Movies and Reports read during the fellowship
Books, Documents and Reports
1. History of Child Rights in India
2. Learning to cartoon
3. YUVA comic books for children on health
4. Health Education for Children
5. OVC Research – UNAIDS Richard Lee 2008
6. NACP III – Policy Document [2007-12]
7. GIPA policy document
8. National Operational Guidelines for Children affected by HIV AIDS
9. Policy Framework for children and HIV AIDS – India 2007
10. SAARC Regional Strategic Framework for Protection, Care and Support of
children affected by HIV AIDS
11. Situational assessment of HIV AIDS affected children in four villages of melur
taluk of Madurai district in Tamilnadu
12. Life Skills Education Toolkit – FHI/USAID
13. Research document of CWC on Street Children
Movies
1. The Story of Stuff
2. Story of mine workers in Bellari, Karnataka
3. Story of Gold mine workers in Indonesia/Thailand
4. Flight 69
5. Amazing Journeys – a documentary on migration of birds and animals on earth
Annexures
I - JLICA Report Brief
As is so often the case in the provision of health care and deciding research agendas,
children have been sidelined in the fight against HIV/AIDS. According to the latest
UNAIDS figures, nearly 2 million children live with HIV worldwide, two-thirds in subSaharan Africa.
In addition, 12 million children in sub-Saharan Africa have lost one or two parents due to
HIV/AIDS. Many more live with a parent or carer with HIV. A very small proportion of
infected children receive antiretroviral treatment, and prevention of mother-to-child
transmission is only given to a third of women.
Diagnosis in infancy is difficult and therefore often delayed. Child-friendly medication is
lacking. 60% of children in southern Africa live in poverty. Now that HIV/AIDS is
evolving from an acute emergency into a chronic epidemic, the way to deliver treatment
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S. Jeyapaul – CHLP 2008-09
and achieve prevention needs to change radically from an individualistic approach to a
broader strategic one. Children and families need to take centre stage.
In an excellent report, based on 2 years of research and analyses, the Joint Learning
Initiative on Children and HIV/AIDS—an independent alliance of researchers,
implementers, activists, policy makers, and people living with HIV—has presented
recommendations for such a change in direction. Home Truths: Facing the Facts on
Children, AIDS, and Poverty, released on Feb 10, points out three broad policies that will
make an immediate and longlasting difference to children:
5. support children through immediate or extended families and
6. deliver integrated family-centred services;
7. strengthen community action to support families; and address family poverty
through national social protection. Such policies are AIDS-sensitive but not
AIDS-directed.
The family is the most important support structure for children. The report argues that the
way orphans have been defined (as having lost one or both parents) and have become the
centre of attention for many HIV/AIDS policies has been unhelpful, if not damaging.
88% of children labelled as orphans have a surviving parent and overall 95% continue to
live with extended families. Additionally, children who live with HIV-positive parents
have needs long before their parents die. Children need to stay within a family or kinship
structure.
Infected children usually live with others who are infected with the virus. The whole
family, not the individual, needs to become the unit for support and treatment. The report
advocates home health visiting and early childhood development interventions together
with strategies to encourage children's education. The use of schools as intervention
platforms misses the opportunity to reach children early and to reach those who are not in
education—the majority in some countries. Economic strengthening of families has to be
the basis to allow many of these programmes to fully succeed.
The best immediate support for families is given by community groups. International
donors need to work with these groups in partnership to avoid duplication, confusion, and
waste of time and money. The authors suggest that coordination could be strengthened
with a district committee that maintains an active register of community activities and
devises a system of accountability that is understood by all and serves the community.
All activities should be delivered within a framework that is based on best practice.
Communities also have a crucial role to act as a backstop when families break down or
when children live in an abusive environment.
Family poverty and undernutrition can be addressed through income-transfer
programmes, such as Mexico's Oportunidades programme or South Africa's child support
grants. These projects are efficient and simple, empower women, and can act as a
springboard for other more complex schemes, such as microfinance loans. Such
economic support increases school attendance, reduces illnesses, improves growth, and
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S. Jeyapaul – CHLP 2008-09
encourages uptake of health services. The largest portion of money is usually used to
purchase food.
Extreme poverty, rather than HIV infection, should be used as a criterion to avoid stigma
and resentment. The report argues that "any developing country, no matter how poor, can
afford social protection packages for children". The positive effect of this policy is now
established beyond doubt and no further pilot studies are needed.
To integrate all these strategies, governments need to take the lead with national plans
and frameworks to scale-up programmes for children and families. With this approach,
society as a whole will be strengthened with intergenerational effects that will go a long
way towards, but also go well beyond, tackling the effects of HIV/AIDS.
Putting children and families at the centre will show long-term vision with guaranteed
future benefits.
II - Child Marriages
The challenge
Marriage before the age of 18 is a reality for many young women. According to
UNICEF's estimates, over 60 million women aged 20-24 were married or in union before
the age of 18.
Factors that influence child marriage rates include: The state of the country's civil
registration system, which provides proof of age for children; the existence of an
adequate legislative framework with an accompanying enforcement mechanism to
address cases of child marriage; and the existence of customary or religious laws that
condone the practice2.
A violation of human rights
In many parts of the world parents encourage the marriage of their daughters while they
are still children in hopes that the marriage will benefit the children both financially and
socially and relieve financial burdens on the family. In actuality, child marriage is a
violation of human rights, compromising the girls’ development and often resulting in
early pregnancy and social isolation, with little education and poor vocational training
reinforcing the gendered nature of poverty. The right to 'free and full' consent to a
marriage is recognized in the Universal Declaration of Human Rights - with the
recognition that consent cannot be 'free and full' when one of the parties involved is not
sufficiently mature to make an informed decision about a life partner.
The Convention on the Elimination of all Forms of Discrimination against
Women mentions the right to protection from child marriage in article 16, which states:
"The betrothal and the marriage of a child shall have no legal effect, and all necessary
action, including legislation, shall be taken to specify a minimum age for marriage...".
While marriage is not considered directly in the Convention on the Rights of the Child,
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S. Jeyapaul – CHLP 2008-09
child marriage is linked to other rights - such as the right to express their views freely, the
right to protection from all forms of abuse, and the right to be protected from harmful
traditional practices - and is frequently addressed by the Committee on the Rights of the
Child. Other international agreements related to child marriage are the Convention on
Consent to Marriage, Minimum Age for Marriage and Registration of
Marriages and the African Charter on the Rights and Welfare of the Child and
the Protocol to the African Charter on Human and People's Rights on the Rights of
Women in Africa.
Source: childinfo.org
CHILD MARRIAGE IS MORE LIKELY IN POOR HOUSEHOLDS THAN IN
RICH HOUSEHOLDS
Percentage of women aged 20–24 who were married or in union before age 18, by
wealth index quintile (1987–2006)
Protection from HIV/AIDS is another reason for child marriage. Parents seek to marry off
their girls to protect their health and their honour, and men often seek younger women as
wives as a means to avoid infection. In some contexts, however, the evidence does not
support this hypothesis and practice. Bhattacharya found that in India, 75 per cent of
people living with HIV/AIDS are married10. In fact, the demand to reproduce and the
stigma associated with safe-sex practices lead to very low condom use among married
couples worldwide, and heterosexual married women who report monogamous sexual
relationships with their husbands are increasingly becoming a high-risk group for
HIV/AIDS.
Strategies to end the practice of child marriage
•
Evidence shows that the more education a girl receives, the less likely she is to
marry as a child. Improving access to education for both girls and boys and
eliminating gender gaps in education are important strategies in ending the
practice of child marriage. Legislative, programmatic and advocacy efforts to
make education free and compulsory, as well as to expand Education for All
programming beyond the primary level, are indicated by the strong significance of
educational attainment in terms of reducing the number of girls who are married.
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S. Jeyapaul – CHLP 2008-09
•
•
•
•
Increasing the level of compulsory education may be one tactic to prolong the
period of time when a girl is unavailable for marriage.
It is also important to capitalize on the window of opportunity created by the
increasing gap in time between the onset of puberty and the time of marriage by
providing substantive skills enhancing programmes and opportunities. There is a
need to develop methods to protect girls at risk of child marriage and to address
the concerns of girls and women who are already married by ensuring the
fulfillment of their right to a full education and providing them with life skillsbased training to ensure that they can earn a livelihood.
Efforts are also required to protect girls who are in union. Decreasing the pressure
on young women to conceive through education and advocacy on the dangers of
early motherhood should be considered. Similar consideration should be given to
ways to improve access to effective contraceptive methods.
Services for survivors of domestic violence should be accessible. Outreach efforts
should consider targeting women who were married before age 18 as potentially
in need of assistance. Mapping child marriage levels within countries may be a
useful practice for programmatic purposes when determining where to launch new
prevention campaigns. It can also be used to track future progress by comparing
child marriage levels at different points in time.
Further data collection and research is also required to explore the impact of child
marriage on boys and men. The demand-and-supply relationship of child marriage
should be qualitatively explored to illuminate dynamics, such as the reasons why
households marry their children and why men prefer younger brides, in order to
inform programming strategies.
Source for figures: UNICEF global databases, 2007, based on MICS, DHS and other
national surveys, 1987–2006.
III - Concerns of children living with
Grandparents
•
•
Poverty:
1. findings suggest that children living in elderly-headed households often do not
get enough food and seldom have access to protein
2. children from elderly-headed households are overworked
3. even though grandmothers and grandchildren see education as very
important, children living with grandmothers do not access education easily
because of lack of money. In addition, if they do get to school, their progress
is hampered, again largely because of poverty
grandchildren as caretakers:
1. another characteristic of the elderly-headed household is that children
function as caretakers. When children have responsibility for the welfare of
others they may become "parentified" - that is, they assume responsibilities
performed more appropriately by an adult, including providing health and
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S. Jeyapaul – CHLP 2008-09
•
personal care, emotional support, caring for siblings and maintaining the
household
an uncertain future:
1. a further stress that is added to the lives of children living in elderly-headed
households is the uncertainty they feel about their immediate futures. They
worry about what will happen to them when their grandmothers die. The
worry that a child in this situation faces is that he or she will have to move
again and will likely have to live with aunts and uncles in a situation they
know from experience is worse than their life with their grandmother
2. also, the children fear (quite realistically) that they will not inherit property
when their grandmothers die, leaving them with no means to make a living
•
a generation gap:
1. the gap between the grandparent’s generation and the children emerges in the
conflict between grandmothers and children over time to play and to socialise
and rest
2. Grandmothers expect that they will be looked after but the children know that
their ability to do this will be severely hampered because of the missing
generation. Parents would have provided the means for further training and
income generation and would have taken responsibility for the grandparents
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