Examination of Witnesses (Questions 240
- 259)
TUESDAY 27 JUNE 2000
MR MARK
GORMAN, MS
FRANCESCA SIMMS
AND DR
DOUGLAS WEBB
Mr Rowe
240. Can I ask particularly Save the Children
for their view of the use of infant formula as a substitute for
breast milk for HIV positive mums?
(Dr Webb) This is a minefield. The recent research
is telling us that mixed infant feeding with breast feeding is
more of a risk than exclusive breast feeding. That is interesting.
The debate is shifting backwards and forwards. We tend to come
back to the basic principle of the best interests of the child.
The problem is that that is so context specific that in some contexts
infant feeding might be the best solution; in other contexts where
water is not clean and equipment is not sterile exclusive breast
feeding is the best way. Overall, we would still advocate exclusive
breast feeding until four to six months. Where you have adequate
counselling services and antenatal services, you may get the aspects
of informed choice for the mothers, particularly in places like
South Africa now, but for the vast majority of mothers in Africa,
for example, infant formula feeding is not the answer. We have
to be very vigilant about this regarding the actions of certain
infant formula companies.
Ms Kingham
241. This is a question about systems of care
provided for children who are orphaned through AIDS. To what extent
are children cared for in institutions or through extended families
or through alternative community support? Are AIDS orphans experiencing
discrimination in provision of care when compared with other orphans?
(Dr Webb) We did some work in Zambia a few years ago
on this kind of breakdown of caring structures. 90/95 per cent
of orphans will be absorbed by extended family members. They may
move and they may migrate. We know there is a lot of migration
related to that. Institutional care in the sub-Saharan Africa
context is virtually non-existent. We would not ever encourage
that anyway. The caring is being done by mainly the grandparents
and it varies according to where you are. We would encourage the
mechanisms which communities themselves identify for supporting
these children. The households are very resilient but they do
require external resources in looking after these children, child
care training, additional funds, income generation. These are
the critical things. The difficulty is in identifying these children
and where they are and whether we want to make a distinction between
an orphan and a non-orphan anyway. A label is not very helpful
in many contexts. We prefer to talk about the increase in the
number of vulnerable children. If you go into a community looking
for the orphans, you will suddenly find there are three times
as many as there were beforehand because you are implying that
there is some kind of assistance coming their way. The big mistake
that was made in sub-Saharan Africa is that enumerators went in,
counted orphans, disappeared and there was no follow up support.
The labelling of children and the categorisation of children according
to presupposed vulnerabilities can be very counterproductive.
We would encourage looking at the family support structure, rather
than the categories of children by orphan status.
(Ms Simms) I would support that. The term "orphan"
as we know it does not apply in Africa because in most African
cultures children belong to the extended family and not to their
parents. If the parents die, they are automatically absorbed within
the extended family. Laws often support that. The problem is not
that there are orphans; it is when the family cannot afford to
meet their basic needs. I did research in Lesotho looking at all
the children in all the homes there. There were 309 children in
homes at that time and only 6 per cent were orphans. The orphans
were not there because they were orphans; they were there because
of poverty and that was the case with nearly all the children
in the homes. What is happening is that there are carers for these
children—at least there were at that time and on the whole
there are now—but they must have support in terms of supporting
those children which could be income generating, for material
aid and psychological support as well, possibly, but basically
it is the income that they need.
(Mr Gorman) Looking at the issue in terms of vulnerability
is a helpful way of looking at it. One measure of vulnerability
that we have noted in a number of African countries is that older,
female-headed households are almost invariably extremely vulnerable.
One way in which they are vulnerable is that older women left
often without a husband, with orphaned grandchildren in the household,
are required not only to care for those household members but
also to go out and try to find work. We were talking before this
morning about the kinds of things that women do. One of the easiest
things is to work in the sex field. Even for older women, age
is not a barrier in that respect. We are looking at not just HIV/AIDS;
we are looking at the issue of household poverty and we need to
look across the generations of household poverty and at what factors
are pushing people from just keeping their heads above water into
crisis situations or into chronic poverty, which older people
themselves repeatedly will say, "We are handing down poverty
from one generation to another." They are very well aware
of their own situation.
(Ms Simms) Although most children are cared for in
the extended family, I do think the problem of institutions is
an increasing one. This has been put to me, for example, by the
Director of the Social Welfare Department in Lesotho. She is particularly
concerned that this problem of institutions is increasing because
that is the easiest thing to do when you have children in need,
to collect them into a children's home. It is very expensive and
very damaging in every way. She was saying that what we need is
aid support to support our families so that the children are not
coming into institutions. They are also getting sexual abuse in
institutions now, which is increasingly a new problem which has
raised its head. What they are asking for is resources for families.
If children really cannot be in their families, let us have foster
care systems, not institutions. It may be a small problem but
it is increasing fast and it is very damaging and expensive.
Chairman
242. It coincides with the experience in this
country, does it not?
(Ms Simms) Yes.
(Dr Webb) We have to make a distinction between institutions
and transit homes. We do know that transit homes are very useful.
That is where there are children who are literally abandoned and
they will be looked after for a short term before being pushed
out into foster communities. In the name of philanthropism, we
are seeing foreign donors coming in, finding a village, collecting
money from school children. The money gets given to the orphans
in a village somewhere and an orphanage is built. The reason why
this is happening is it is misguided philanthropism in the first
place. It is well meant, but it is the absence of a policy framework
which allows these things to happen, which can be counterproductive.
As soon as one chief gets one, everybody wants one.
Mr Rowe
243. Does Save the Children pay for foster care?
(Dr Webb) No.
244. The donors do not pay for foster care?
(Dr Webb) We would not pay for foster care in the
direct sense. We would not pay foster parents, if that is what
you mean. We would support NGOs who are looking at ways of placing
children within foster families. We have a programme in Kampala,
for example, which is working with HIV widows in preparing for
their deaths to get the children to participate in where they
are going to live after their death.
245. In this country, foster parents are paid.
If it works in this country, listening to what Ms Simms says about
families needing money, why do we not have a system whereby the
donors pay for foster care?
(Ms Simms) The first thing must be support financially
for the extended family, rather than paying for foster care. If
there really is not an extended family member, and that is very
rare in Africa—
246. In this country, extended families are
often able to be paid as foster parents.
(Ms Simms) This is what I mean: pay the extended family
first and if there really is not an extended family member, then
pay locally-based foster parents as your next step.
Ms Kingham
247. You said that most children are cared for
by extended families. We have had evidence from Professor Alan
Whiteside which gave a different angle on that situation. He said,
"There is a myth that the African extended family absorbs
the orphans that are left . . . The idea that the household can
cope is not the case. One of the whole emphases, particularly
in southern African countries with rapid urbanisation, has been
towards a more nuclear family. In a setting where you are living
in a township house, it is not designed for an extended family,
so we have some serious, serious problems there." Can I have
your comments on that?
(Dr Webb) I know Alan. He is speaking from a South
African perspective anyway which is a different situation. Going
over the Limpopo, you do find that extended families are coping
to a very limited extent. You are not finding hordes of children
wandering around aimlessly. You are seeing increasing numbers
of street children, yes, but we have done surveys of those street
children. Only between a third and a half are orphans and that
is not massively more than the background child population. Poverty
is the cause of that kind of thing. If we are looking at institutionalisation
as an answer to that problem, I would not go down that route at
all. We have to find ways of supporting communities and taking
care of these children to prevent children becoming street children
and abandoned in the first place. What we have tended to focus
on in the past is addressing the end result of family breakdown.
What has been lacking is the work in the communities to identify
these children and strengthen the capacity to cope and keep the
children in the communities. We are doing this work in Cambodia
right now, even where the epidemic is still in its early stages.
We are keeping the children in their communities during the dry
season, for example, so they are not pushed out into a more vulnerable
situation. This debate about whether extended families are breaking
down or not has been going on for a long time. It is used as a
flag to wave at meetings. The image of children running around
city centres, of being abandoned, is a dangerous image. We have
to focus on what is positive and what is doable.
(Mr Gorman) I agree with much of that and I think
I would somewhat take issue with what Alan Whiteside said because
even in South Africa, even in urban situations in the townships,
you do find very well developed family and community networks.
One of the glues that holds that together is the fact that the
South African Government pays an almost universal old age pension
which is often the most considerable part of the household's income.
That has both a positive and a negative effect for older people
but it has been shown to be a very effective anti-poverty strategy
because those older people use that money very strategically.
They pay school fees with it; they start up micro enterprises
for younger relatives and so on. They tide people over in terms
of financial crisis. We can overdo the nuclearisation of the family
argument. Migration has stretched families in lots of different
ways. Geographically, they are moving apart. One of the problems
that Francesca alluded to earlier on is the fact that migration
into, say, a township in South Africa implies that the rural community,
the rural family, the older person and the grandchildren that
they may well be supporting are not receiving financial transfers
to the extent that used to happen. Poverty is affecting all generations.
The issue of family support is a very complex one. We need to
keep on returning to two issues. One is the vulnerability issue.
Who are the most vulnerable families? The other is the means by
which we can respond to that vulnerability through putting in
external support, rather than continuing with the debate on whether
the family is disintegrating.
Mr Rowe
248. I would be interested to know, if you are
keeping children in their families in Cambodia, for example, what
mechanism are you using? Are you giving them money? If you are
not giving them money, what mechanism are you using, because this
is a key issue.
(Dr Webb) They go to the city during the dry season
because there are employment opportunities in the city. What we
have to do is not say, "Here is some money"; what we
need to say is, "Here are some skills. Here are some opportunities
for you to make money", which is a totally different thing.
We are working with organisations to look at vocational training.
We use market gardening quite a lot, bringing in skills from outside
to get some basic skills in marketing. It does not take an awful
lot to get the children to understand that life in the city is
not so great anyway. Working with the community does give them
the opportunities to stay there. That might be recreational activities
but the most important thing is income generation activities.
When we are talking about money, I do not think we are walking
around with cheque books. We are talking about giving people the
means to make a living or help the household economy where they
actually are. The migration to make money is a very big problem
and households will change their composition to maintain a dependency
ratio. What we are finding is there is a big backwards and forwards
migration between affected households of children and young adults
to make sure the household can maintain itself. Once it does not
maintain itself, it vanishes.
(Ms Simms) I would support that. It is income-generating
projects first. However, there may be a few who do actually need
money because you are now getting elderly people looking after
children and sometimes they have land and they just are not able
to farm it. Also with some families, you may get an interim period
where they need material aid before income-generating aid. When
we are talking about extended families, Colin Murray has researched
this in detail in southern Africa and does point to the fact that
extended family networks are not breaking down. It is the transfer
of money in between them that is decreasing and as a result there
are an increasing number of families who therefore cannot support
the basic needs of their children.
Chairman
249. It is the impoverishment that AIDS brings
about which is really the crucial question?
(Ms Simms) Yes.
Mr Worthington
250. Can I ask questions relating to the status
of children who are connected with HIV/AIDS, not that they necessarily
themselves have the virus, but what legal difficulties do they
experience? What stigma do they experience? What are the best
strategies for overcoming this?
(Dr Webb) The legal domain has not really touched
on this area yet, as far as I am aware. It is still a very subtle,
community, stigmatised thing. I was with some children in Kampala
recently who do not know their status because they are in families
affected by AIDS who openly come out. They have found that their
biggest problem is with their peers and the school environment.
The amount of psychological torment these children receive is
quite horrendous in terms of their ability to mix with peers,
accepting their own family status. Their self-esteem is completely
ruined in many cases. A lot of younger children will only find
out that they are orphans, for example, by being told by their
peers or overhearing it in conversation. It is far more a case
of the subtle psychology of discovering you are an orphan in the
first place and getting to grips with being part of an affected
family. This has massive implications for voluntary counselling
and testing. The biggest problem with that is that young people,
on the whole, do not want to know their status because they fear
discrimination and rejection, like we all do when we are adolescents.
In an HIV prevalent environment, that is the biggest fear for
young people.
251. Can you expand that a little bit? Say the
child has lost one or both parents from AIDS. What is the peer
group's explanation of what that means to the child who has had
that loss? What is the form of that stigma? What is the explanation
as to why he or she has been picked out?
(Dr Webb) AIDS is a very stigmatised disease. We should
not think the stigma is disappearing because of this. Children
can be horrible to each other anyway, let alone given an excuse.
It comes in different forms. More serious and more prone to our
ability to intervene is the fact that children are being chased
from school, for example, by teachers or there is a certain lack
of sensitivity within the—
252. Because it is contagious?
(Dr Webb) No. We are talking about children who are
of unknown status, more than likely negative, whose parents are
ill or dying or dead. The first point of reference is that that
child is an AIDS orphan and the problem is then that the foster
parents, for example, are reluctant to pay school fees because
they think the child is going to die, because they assume that
the child is HIV positive. Any illness the child displays is assumed
to be AIDS. This point about 30 per cent transmission: we might
be able to talk about it here, but in the communities in many
places if the parent dies the child is by connection infected.
The stigma is often linked to assumed infection but also the fact
that they are from a contaminated, polluted family environment.
253. In the past, the disease you would compare
it with would be something like leprosy?
(Dr Webb) Yes. Every country has gone through the
stages of classic denial and then acceptance. South east Asia
is going through this right now.
(Mr Gorman) You asked about the nature of stigma.
It is important not to forget the care givers as well. This is
something that affects whole families, not just children with
AIDS and people with AIDS. We heard earlier on about the fear
of stigmatisation and misreporting of death and so on. That certainly
has been our experience both in Africa and Asia, that whole families
fear stigmatisation. They internalise the shame. We were talking
about religious support earlier on. I think I would support what
our UNICEF colleagues were saying, that religion can be part of
the problem because there is a tendency in some religious organisations
and churches to stigmatise and blame and to impute HIV/AIDS to
godlessness or to lack of faith. There is a whole range of pressures
acting on whole families. We have come across this in running
small counselling programmes with older people. The first thing
they feel is shame. The second thing they admit to is ignorance.
The third thing is they say, "I do not want to know any more
about this disease." This is with older people who are care
givers to people with AIDS. They simply want to screen it out.
An enormous amount of that comes from outside stigmatisation and
pressure that they feel from their communities. Communities are
very supportive, in our experience, with families with illness
until they discover that the illness is HIV/AIDS.
(Ms Simms) What is so damaging is that the children
suffer not only all the distress that other children whose parents
and sibling die suffer, but also the stigma. Generally there are
excellent informal African support systems for bereaved people.
They are not being accessed by AIDS orphans and AIDS affected
families because of the stigma.[10]
Ann Clwyd
254. We have touched on quite a bit of this
anyway. One of you said that South Africa pays an almost universal
old age pension. Is the answer for the elderly to ensure that
in every country that is the case? Are there other things that
we should be exploring that you have not talked about already?
(Mr Gorman) There is a raging debate as to how sustainable
the South African pension system will be. It is a uniquely generous
system in sub-Saharan Africa. There is room though for experimentation
with different forms of payment, cash payment, maybe in kind payment
through vouchers, for example. That is being experimented with
in other circumstances in Africa, for payment for medical treatment,
but there is also much that can be done with public financing,
even at a very low level. The Indian Government, for example,
pays a very small monthly pension to what they call destitutes
and it reaches a very small proportion of the older population
below the poverty line. It could reach more and it could be better
targeted. It could also be paid in a different way. It is paid
monthly at the moment. It could be paid annually at a critical
time such as the end of the hungry season, for example. It could
have a major impact, as we have seen the South African pension
have on household economies at critical moments during the year.
Overall, state pension systems unfortunately, in my view, are
not going to be likely answers in developing countries but targeted
payments in cash or kind could well have a role to play.
Ms Kingham
255. The World Bank have been looking at these
poverty reduction strategy papers and trying to encourage social
safety nets within countries as part of their country plan. Are
they looking at providing any kind of social service payments
in relation to trying to give support networks in HIV/AIDS issues?
(Mr Gorman) Not as far as I know but I have not dealt
directly with the Bank. As part of an overall safety net strategy,
it is certainly very vital and there are people in the Bank who
may be interested not just in HIV/AIDS but looking at critical
issues like health status and supporting that through a safety
net system. I think that is to be encouraged and the Bank is really
moving on it.
Ann Clwyd
256. How would you sum up the impact of HIV/AIDS
on the elderly in particular?
(Mr Gorman) Older people are affected in a number
of ways but the critical effect is that older people's start in
life is that they are amongst the poorest in communities in sub-Saharan
Africa and Asia. If additional burdens come into older person
headed households, particularly female ones, we are seeing some
of the things we were talking about earlier on: greater care giving
responsibilities, reduced, ability to earn a living, to work on
the land, to earn a basic income, which pushes people below that
chronic poverty line into the crisis situation that many families
affected by AIDS are facing. The other side of that is the impact
it has on those older carers who have huge motivations to provide
for younger relatives. They make enormous sacrifices to pay school
fees, for example, but it is almost like the rainbow disappears.
As they sell off an asset to pay the school fees, they find the
fees have gone up. Then they have lost the asset, the piece of
land, an animal, whatever it is that they have sold off, without
the gain even of having their grandchildren complete a year of
primary school. Nevertheless, there is a remarkably high incidence,
in Uganda for example, of particularly older women managing to
pay for grandchildren to get through the school year, but it means
they do not eat or it means they go without light. It means that
they are making strategic decisions about sacrifices for themselves.
257. Do you think donors are sufficiently considering
the elderly in their HIV/AIDS programmes and anti-poverty programmes?
(Mr Gorman) No. At all levels, older people seem to
disappear from over the horizon. There is a mention in the DFID
memorandum of grandparent care but it is not followed up. It has
to be seen very much in the household context. Older care givers
and older people affected with AIDS are part of the equation and
they need to be seen as part of that intergenerational household,
not asking for special treatment but they are targeted appropriately
as part of the household.
258. Are there any examples of good practice
which ought to be replicated elsewhere?
(Mr Gorman) A very small number. For example, in Botswana,
there have been some very successful experiments, pilot projects,
looking at peer training, older people working with each other.
They do not find it appropriate to work with younger people in
training programmes but they do with their own peer groups. That
has been shown to have an important knock-on effect in giving
appropriate and accurate information to the younger generation.
There is work going on in that field.
Mr Khabra
259. Your organisation recommends that donors
should support the direct and indirect school costs of orphans.
What impact is HIV/AIDS having on the education of children? Are
governments, donors and NGOs thinking innovatively on how to provide
education when children are being withdrawn from school or schools
are closing because there are too few teachers?
(Dr Webb) The impact of AIDS on the education sector
is probably the most critical sector that we have to address.
That and the health sector are the two very difficult sectors
to work in. What we are seeing is a contraction of education sectors.
We are seeing very high mortality rates of teachers. In the most
heavily affected countries, you are looking at 20-30 plus per
cent of teachers HIV positive. Also, you are seeing a reduced
demand for education from families who cannot afford to send their
children to schools or that child labour is needed for other things
as the children become producers in the household economy before
their time. The other problem with that is, if we are trying to
increase the capacity of the education sector to be an education
tool for HIV/AIDS work, teachers themselves are in no position
to be educators. We are seeing a decline in the health of teachers,
the number of teachers and also the ability of them to be effective
educators around HIV/AIDS issues as well as their normal curricular
activities. We did some work with teachers in Zambia before. We
found that we had to overcome their own attitudes towards the
disease, their own insecurities about their own infection if they
are seeing their colleagues dying off at an enormous rate. The
experiences of Uganda are very interesting here because of the
universal primary education. What we found there is that the quality
of education is seriously under threat. The Government, in response
to the impact of AIDS and the fact that children were being denied
access to education, said that primary education should be provided
for everybody, the first four children in each household and every
orphan. The problem with that is that children become orphans
when they are not orphans; households start making decisions about
who gets access to education and we are hearing reports of class
rooms of 200 children plus. In that context, where the quality
of education is going down, the opportunity costs for the family
of sending a child to school are going up. The sectoral response
is very difficult when you have such high infection rates within
the sector of staff itself. What is the answer? You train more
teachers. You have improved teacher training curricula. Also,
you look beyond the formal education structure. You have to look
at community school development, vocational training for those
children who are not going to be in the education system and make
sure that the children are in some kind of training or education
or at least busy. We must move away from this idea that every
child must be educated because the sector simply cannot cope with
this. We need innovative models of how to address the immediate
needs of communities using the children and adolescents as a resource
in a non-formal education environment because at the moment it
really is under a lot of stress.
10 Note by witness: So one of the major things
that must be tackled is community education concerning the needs
and suffering of AIDS affected families and systematic work with
communities to dissipate stigma and to elicit community support
for these children and families. Back
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