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HIV/AIDS Projects
Support
for people within their communities
(see the latest News on the HIV/AIDS
projects)
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Tsepho-Hope Centre and the Kwase-Kwaza Home Based Care Project, are two
of many projects in the Highveld area of South Africa which are
supported through the ‘Serious Music’ initiative. They are located on
the eastern edge of Johannesburg: Tsepho Hope in Tsakane is in a remote
area around old mining settlements. Kwase-Kwaza, which means ‘ the dawn
has come’ is based on the edge of the veld (rural area) in an informal
settlement of Katlehong South, where people live in shacks.
The
work involves caring for terminally ill people, most of whom are HIV
positive, and their children, in their homes. Many being cared for are
single parents, and when they die, their children are added to the ever
growing orphan population in the country – almost 600,000 orphans will be
part of the SA community within 2 years. Both projects have started
pre-schools for under 7s (when primary school begins in SA) to care for the
children, feed them and stimulate them, during the day. Many are already
orphaned and live with a grandmother or relative. About a third of the
children are cared for by an older sibling – there is no income in these
houses so the pre-school is vital for simple survival.
There
are not enough hospice beds available so care within the home is the only
option. The Projects provide a range of services including: food parcels,
hospital transport, medicine, bedding; and expenses for the volunteer teams
travelling around townships to visit clients.
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What is "Kwase-Kwaza"
Kwase-Kwaze: meaning 'the dawn has come', is a project caring for people
infected and affected by HIV-AIDS in one of the poorest informal settlements
outside Johannesburg. The project co-ordinator, Grace Sibeko, oversees 20
volunteers who visit patients daily to give care, food, and support in their
homes, because there is no room at the hospital; and no hospice beds for
them. Some of the homes are little more than tin huts. Most people have lost
their jobs or their breadwinner has already died - they are destitute.
Without Kwase-Kwaza, over 170 people would not eat or have any support
through this terrible disease. All the patients are in the terminal stages.
The project also supports children - children of their patients who will
soon be orphans, or children already orphaned. Two pre-schools cater for
over 75 children monday to friday. Other children, who are being supported
to stay in school, come to the Kwase-Kwaza office after school to collect
food, or visit the doctor, get clothes and shoes when needed, money for the
bus, and moral support to study.
There are many hundreds of people in each community in South Africa who
need this kind of support to live their last days with dignity and love, and
to ensure their children are cared for now, and when they are orphaned. It
costs £2200 to keep a preschool for 50 children open each year. |
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Carers
Carers provide a range of
bathing, cleaning, cooking and feeding (throat infections are common and
some people cannot eat properly, so become terminal more quickly), money for
fuel, clothes, hygiene advice to families, support to other relatives and
children, assistance for hospital and clinic visits, follow up with clinics,
medicine receipt and delivery, referrals to other agencies for specialist
support. The range offered depends on each person’s situation.
Both
Tsepho-Hope and Kwase-Kwaza have received government funding equivalent to
£900 per month to cover all costs, (for only 10 months to April 2002)
including a requirement to pay each volunteer a monthly ‘incentive’ of £45.
All the volunteers are unemployed and this is their only means of income.
With a team of 20 volunteers, Kwase-Kwaza can only pay half the team, if
other costs are to be met (telephone, book-keeping, food, cleaning
materials, disposable gloves and other patient needs). One team of
volunteers has 19 families per volunteer to visit weekly; some need daily
visits, and the need is increasing. So 10 women work for no expenses,
simply because the need is so great in their community that they cannot turn
a blind eye.
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The
Projects, through the Bishop Simeon CR Trust, have received
some funding from Comic Relief, and can train and employ
pre-school workers and train and employ Volunteer counsellors. This is a
vital part of the patient and family care, especially for children and other
bereavement support. We still need
to support a further eight volunteer counsellors to work with the home-based care groups. This costs around £40
per month per person plus around £60 for the training.
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Eerstehoek home-based care groups in the Mpumalanga Province
need support to strengthen their existing services also through support for
a pre-school and counselors. We are anticipating a government grant for
training workshops for this rural area, which will focus on youth groups and
basic HIV education, since this ground is yet to be fully covered in the
Province. There are approximately 8 operating home care groups in
this part of the Province, serving approximately 0.5 million people spread
over a wide area. We are working with 4 of the groups. Other groups have
folded for lack of funds. It costs around £1000 to set up a pre-school and
around £2500 to run one for a year (excluding training of workers).
Support for children affected by or infected with
HIV/AIDS
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Tsepho-Hope and the Good Hope Centre are organising
free access activities such as breakfast clubs and pre-schools (in
local church premises) for children who are affected by HIV in some way.
Children are referred through the HomeBased Care workers.
The Diocese already manages an Education Fund for the
Bishop Simeon Trust (BST) for children of school age, who need support
to stay at school when their parent becomes too sick to work.
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Clubs and pre-schools are open to children whose parents are seriously ill,
even if this is not diagnosed as HIV, because of the context and need for
confidentiality. Parents of children using the services are visited by
homecare teams to assess other needs in the family. These services
give priority to children from child-headed households.
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Other support
The Diocese manages a Hardship Fund for BST to help the most
destitute people affected by HIV. This includes contribution to funeral
costs, repairs to a shack, fuel and special food where a patient cannot eat
ordinary foodstuffs. In one instance which highlights the devastation, a
family of four boys lost their mother, and father had already died. The lack
of money meant their mother’s body remained in the mortuary for 6 weeks.
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After collecting among neighbours and the local school the Hardship Fund
enabled mother to be buried by meeting the remaining funeral costs.
There is one hospice and children’s care centre in the area –
St Francis Boksburg. It offers around 40 adult beds and 36 children’s beds
to those in greatest need of terminal care. It takes parents with their
child, and facilitates adoption where appropriate. The children are cared
for in Rainbow House – a sign of hope among so much pain.
For the Community HIV Programme overall our objectives over
three years:
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to secure staff salaries for 4 local co-ordinators in
homebased care groups for three years to provide stability to the
community services they offer, and to improve effectiveness
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to provide training for 30 volunteers in child care
services linked to the community services and provide allowances for those
trained child care workers for the development of children’s services, so
that people with HIV can be supported with child care, or work in child
care.
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organise staff, management and volunteer training (2
seminars annually ) and 2 annual workshops for volunteers and staff to
exchange experiences, identify best practice and update on
information/resources available to people affected by HIV .
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to provide basic counselling service through offering
volunteer training and incentives (300 counselling hours a week through 8
counsellors)
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to provide daily food and activities for 400 children (aged
0-6) who are affected by HIV, and access other services which support
children, such as welfare allowances, school bursaries etc. for children
of school age in families affected by HIV.
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to
build confidence within the community about their ability to respond to
the HIV crisis, and to reduce stigma against people who are HIV positive
(or perceived to be HIV positive, since testing is rarely available or
relevant) and encourage early referral for support.
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to
build local capacity to manage the HIV epidemic in the long term in the
most effective way eg providing models for other groups being established,
co-operative working (not competition). This in turn provides experience
relevant to employment, as well as awareness of
the importance of community service.
If you would like to contact us to find
out more, click here.
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