13. Memorandum submitted by the International
HIV/AIDS Alliance
1. INTRODUCTION
The International HIV/AIDS Alliance is an international
NGO that was established in 1993 to support communities responding
to HIV/AIDS in developing countries. The Alliance works with its
partners in over 20 developing countries in Africa, Latin America,
Asia and Eastern Europe.
The Alliance provides funding and technical
support to local NGOs in Zambia, Burkina Faso, Mozambique, Cambodia,
Mongolia and India who are working with orphans and vulnerable
children. This work has two main focuses: supporting community
based programmes of support for orphans and vulnerable children,
and supporting childrens' participation in HIV programming. The
Alliance acts as a conduit for funding from donors, and with this
funding provides technical support. This technical support has
many forms—tools development, advice to programmers, policy
and advocacy support, sharing learning and good practice, and
other efforts to strengthen the quality of our partners' HIV programmes.
One of the best examples of our technical support has been the
development of our flagship programming guide for work with orphans
and vulnerable children, Building Blocks: Africa-wide briefing
notes. Building Blocks has, in its first year, proven to be
a popular and influential guide to developing good programmes
on psychosocial support, health and nutrition, economic strengthening,
education and social inclusion. Building Blocks was written
for African programmes, and is being translated into Shona and
Ndebele. A similar project is in progress in Asia, developing
a similar resource in English, Thai, Hindi and Khmer. A copy of
Building Blocks is provided with this submission. (Not
printed)
The Alliance welcomes the International Development
Committee's evidence session and notes the timeliness of it. We
have some pre-existing concerns that the Department for International
Development's new strategy for HIV will fail to prioritise orphans
and vulnerable children as an important priority area for the
UK Government's development programme. We hope that this evidence
session will help to sharpen up the Government's knowledge of
and commitment to orphans and other children made vulnerable by
HIV/AIDS.
We are eager to present oral evidence to this
process, providing some accounts of what works in programming
directly from our field experience.
The Alliance urges the IDC to adopt the term
"orphans and vulnerable children" as a more inclusive
and specific term that incorporates those children who are not
currently orphans but might be, for example, caring for a parent
who is ill and dying of AIDS. AIDS makes certain children vulnerable
who do not necessarily fall under the category of "AIDS orphans".
Children living in households that are caring for orphans are
often deeply affected by and vulnerable to AIDS. In addition,
our field experience also shows that the term "AIDS orphans"
can be deeply stigmatising. We believe "orphans and vulnerable
children" is a more accurate and neutral term.
2. THE NEED
TO SCALE
UP OUR
EFFORTS
The projections provided by UNAIDS (2003) of
more than 14 million children under the age of 15 who have lost
their mother, father or both parents to AIDS is evidence enough
for a massive scale-up of work to support orphans and vulnerable
children. But Phiri and Webb (2002) argue that these figures seriously
underestimate the true extent of the crisis, excluding as they
do orphans aged 15 to 18, and children orphaned or abandoned as
a result of other causes.
Even more disturbing are UNAIDS projections
for 2010, estimating that the figure will rise to 25 million orphans
due to AIDS. If we accept Phiri and Webb's arguments, we must
assume that this astounding figure of 25 million orphans and vulnerable
children is under-estimated, that in fact there will be many more
than 25 million orphans by 2010.
The strongest arguments for scale up of global
efforts to support orphans and vulnerable children are the moral
and ethical ones—it is morally unacceptable for most of
us, individuals and institutions, to accept that 14 million of
the world's most vulnerable children are left without support
and care. But almost as compelling are the social and economic
arguments that highlight the potential for endemic poverty, disadvantage,
abuse and social exclusion shaping the lives of millions of children,
many of whom will grow up to be socially excluded adults. More
compelling still are scenarios that begin to describe the long-term
effects of a system where millions of children are deprived of
the care and protection ordinarily provided by families.
Governments who take seriously their commitments
under the UN Convention on the Rights of the Child or their commitment
to paragraphs 65-67 of the UN Declaration of Commitment on HIV/AIDS
(2001) (REF UNGASS) will need to rapidly scale-up their resources
for programmes that meet the needs of orphans and vulnerable children,
and prioritise the needs of orphans and vulnerable children as
part of national HIV/AIDS policy. The UK Government has yet to
fulfil its commitments to UNGASS, and will need to report on its
progress to this end next year.
The US Government is beginning to place a realistic
emphasis on the need to support orphans and vulnerable children.
The UK Government should follow.
The draft strategic framework on orphans developed
by UNICEF and UNAIDS, Framework for the Protection, Care and
Support of Orphans and Vulnerable Children Living in a World with
HIV/AIDS, was endorsed in principle by DFID in 2003. The Alliance
expects this endorsement to be made real in DFID's strategy and
programming.
3. THE NEED
FOR A
SUPPORTIVE LEGAL
AND POLICY
ENVIRONMENT TO
ADDRESS THE
NEEDS OF
ORPHANS AND
VULNERABLE CHILDREN
Children's rights, as prescribed by the UN Convention
on the Rights of the Child (CRC), include:
— the right to survival, development
and protection from abuse;
— the right to have a voice and be
listened to;
— that the best interests of the child
should be of primary consideration;
— the right to freedom from discrimination.
For the rights of children affected by AIDS
to be made real, particularly the rights of orphans, national
governments must be providing protections in law. Our experience
in Burkina Faso, Mozambique, Cambodia and India highlights how
vulnerable orphans are to HIV-related discrimination, that they
often have little control over the confidentiality of their own
or their parents' HIV status, and experience poor access to services,
including health services.
The UK Government can support anti-discrimination
law and policy in its Country Assistance Plans and programming
guidelines. Legal and policy structures that support orphans and
vulnerable children can also feature in DFID's "3 1s"
strategy, as an important dimension to national HIV plans.
4. CHILD-FOCUSED
PROGRAMMING
"We began by simply helping the orphans
and other vulnerable children in our neighbourhood. We gave them
food and school fees, and advised them how to keep safe from AIDS.
Then we decided to invite the children to take a more active role
in the programme. The children led the planning of the Christmas
party. It was a great success, and since then, they have become
much more involved. Childrens' ability to organise their own programmes
and activities has surprised many of the community's leaders."
Pastor John Chiwarara, Chairman of Chirovakamwe programme, Zimbabwe
A children's rights perspective is essential
to good HIV programming. Participation is every child's right,
as prescribed by the UN Convention on the Rights of the Child,
but the involvement of children in HIV/AIDS programming has many
pragmatic benefits that assist the effectiveness of community
based HIV programmes. These benefits include:
— Children and young people can best
identify the problems they are facing.
— Children can provide support to each
other, to younger children, and to children who are ill with HIV/AIDS.
This is of particular value when children are experiencing HIV-related
discrimination and exclusion from communities because of either
their positive HIV status, or their association with HIV/AIDS
because of a parents' illness.
— Children can influence the behaviour
of their peers and others in the community.
— Involving children, and helping
them find ways of supporting others, can help build their self-esteem.
— Involving children in decision-making
about their future, especially when their parents are sick, helps
children to get the support they need. Inheritance rights are
less likely to be violated as a result.
— When children gain more control over
their lives, they develop hope for the future, increasing the
likelihood that they will choose behaviours that help them to
avoid HIV infection.
(From Children's participation in HIV/AIDS
Programming, International HIV/AIDS Alliance, www.aidsalliance.org)
5. MODELS OF
CARE
The Alliance is working with communities who
are supporting orphans and vulnerable children. This support comes
in many forms, but often means households of grandparents, other
relatives or neighbours are caring for orphans. Different communities
are finding different solutions to the problem of increasing numbers
of orphans and vulnerable children, and they are often doing this
in situations that are characterised already by poverty, isolation
or disadvantage. Despite these inequities, communities are adapting,
and the Alliance holds that they should be supported in doing
so.
Adoption and fostering into households led by
relatives or local community members is both the most successful
model for a child's overall development, and is also the most
cost-effective solution (International HIV/AIDS Alliance, 2003).
But our experience has shown that communities are often too poor
to cope with the additional burden. We are seeing successful responses
where communities and families are managing and adapting, supported
by resources, training and by the "ownership" of the
problem by community leaders.
Case study: Vasavya Mahila Mandali, Andhra Pradesh
Vasavya Mahila Mandali, an Alliance partner
in Andhra Pradesh, India, has developed a community based orphans
programme as an initiative of its womens' support and micro-credit
groups. Women involved in the Livelihood Options support groups
came to hear about the needs of orphans and vulnerable children
in their communities through these support groups, and have, over
the last four months, been volunteering to foster local orphans.
Vasavya Mahila Mandali are providing support in the form of food
and clothing, and some financial assistance, including micro-credit
assistance. They have recently established childrens' support
groups, especially for orphans in their local community, to begin
to address in a formalised way the psycho-social needs of their
local orphans and vulnerable children. Staff and volunteers from
the project regularly visit the homes of foster mothers, offering
support and guidance to both the foster mothers and the children.
This programme has already witnessed many successes—children
remain in their local communities, continue being educated at
the same school, and foster mothers, with support, are becoming
great HIV advocates and awareness raisers—at local schools,
with neighbours, with local politicians. Vasavya Mahlia Mandali
are now planning to scale up this programme, taking it to seven
new districts.
The literature on the negative impacts of residential,
or orphanage-style care is extensive (see Phiri and Webb 2002).
Children often miss out on important developmental influences,
and this can effect the development of their social and cultural
skills, their educational attainment, their basic living skills,
parenting skills and their experiences in close relationships.
In addition, Phiri and Webb (2002) estimate
that it is approximately 14 times more expensive to care for children
in institutions than it is to support them and their carers in
community based settings. Whilst the Alliance accepts that for
some children, in some settings, institutional care is a necessary
intervention, we strongly urge the UK Government to support community
based responses to the care needs of orphans and vulnerable children.
6. OLDER PEOPLE
AS CARERS
"It wasn't supposed to be like this. These
children's parents were supposed to be taking care of me. Now
they are dead and I am nursing their children." Akeyo, 74,
caring for her 10 grandchildren, Kenya (Kendo O, East Africa
Standard, 21 February 2001)
Rapidly increasing numbers of orphans and vulnerable
children are creating new and distinctive family structures in
many parts of the world, most particularly Southern Africa. For
many families, the middle generation—both women and men—have
died or are ill, leaving the old and the young to support each
other. Usually, this means there are large numbers of orphans
and vulnerable children living with grandparents or older people
in a single household. And the numbers of children older people
are caring for is increasing.
A large number of these households are headed
by older women caring for the orphaned children of their deceased
adult children or other relatives. Whilst this model of care ensures
that children grow up in their own families and communities, it
places tremendous strain on what are often already limited household
incomes. Loss of the middle generation of adults severely reduces
the income and consumption capacity of families affected by HIV/AIDS.
This is particularly the case for older people and orphans (Help
Age International/International HIV/AIDS Alliance, 2003).
Our experience is showing that older people
are selling land, property, cattle and other assets in the struggle
to meet their own basic needs and to care for their grandchildren.
Social protection, in the form of a low level
of income guarantee, for all people caring for orphans and vulnerable
children, in particular older people, would provide practical
and meaningful support. Similarly, foster care or child support
grants can alleviate some financial burden.
Whilst this is largely a responsibility of national
governments, the UK Government, in its development assistance,
can provide technical and financial support to start social-protection
schemes in countries that have a limited tax base.
7. PSYCHO-SOCIAL
NEEDS
Children who are orphaned or vulnerable because
of AIDS are experiencing grief and loss associated with their
parents' death, guilt, anger and sadness. In addition, parents
ordinarily help children to develop a sense of self. Without that,
many orphans—particularly those who have been institutionalised—lack
a sense of identity, belonging, culture, status, self-respect
and confidence. These psycho-social needs are often experienced
also by carers, particularly grandparents, children looking after
younger children, and carers looking after many children. And
orphaned children living with HIV who are aware of their status
are carrying yet a heavier burden linked to the experience of
living with HIV, managing their illness and coping with HIV-related
stigma and discrimination.
But these psycho-social support needs are often
overlooked. The provision of material assistance to orphans and
vulnerable children is, by comparison, more straightforward, and
this often means that well-intentioned programmes only provide,
for example, food, clothing and housing.
Attention to the psycho-social needs of orphans
and their carers must be central to programming, alongside other
essential support like food and housing. Examples of this kind
of support are varied—created and adapted by communities,
and requiring support and assistance from governments and donors.
8. ACCESS TO
TREATMENT FOR
CHILDREN WITH
HIV/AIDS
Our experience is demonstrating that orphans
and vulnerable children have very poor levels of access to health
care, including life-saving anti-retroviral treatments (ARVs).
The reasons for this are many. Most people in developing countries
have poor access to ARVs, and children are part of that general
picture of inequality. However even in places where ARV access
is opening up, the specific task of treating children is not prioritised.
DFID can play a direct role in addressing two
of the major obstacles to access to ARVs for children, including
orphans and vulnerable children:
— There is a lack of trained health
care workers with specific expertise in the provision of ARVs
to children. The specialist field of paediatric AIDS care, including
ARV provision, has developed substantially in northern, well-resourced
health systems, but this speciality must be resourced to develop
in countries that have high numbers of children with HIV/AIDS.
DFID must support this process through its Country Assistance
Plans.
— There is a lack of paediatric ARV
formulations. Children are rarely involved in ARV trialing and
this affects the numbers of ARV formulations that are licensed
for use with children. DFID's research and development programme
must address this shortfall.
RECOMMENDATIONS
That the UK Government prioritise orphans and
vulnerable children in the forthcoming DFID Programme of Action
on HIV/AIDS.
That the UK Government allocate identifiable
funds to programmes targeting orphans and vulnerable children
through its budgeting processes.
That the UK Government support—in principle
and in practice—the UNICEF strategic framework on orphans
and vulnerable children.
REFERENCES
Help Age International/International HIV/AIDS
Alliance, (2003) Forgotten Families: Older people as carers
of orphans and vulnerable children (www.aidsalliance.org).
International HIV/AIDS Alliance (2003), Building
Blocks: Africa-wide briefing notes (www.aidsalliance.org)
Phiri S and Webb D (2002) "The Impact of
HIV/AIDS on Orphans and Programme and Policy Responses",
in AIDS, Public Policy and Child Well-being, Cornia, G
A (Ed) UNICEF/IRC (www.unicef-icdc.org)
UNAIDS estimates: www.unaids.org
March 2004
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