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The Topsy Foundation partners with rural communities, empowering people infected with, and affected by HIV and AIDS, through medical care, social support and skills development.
The Topsy Foundation, a fully-registered and internationally-respected South African Non Profit Organisation (NPO), provides relief services to some of South Africa’s most under-resourced rural communities through a multi-faceted approach to the consequences of HIV and AIDS and extreme poverty.
Topsy’s interventions are characterised by the provision of medical and social services (with a strong emphasis on wellness) to people and families who do not otherwise have ready access to such services. Typical interventions include the provision of professional medical treatment (including antiretroviral therapy) to people living with HIV and AIDS (PLWHAs) and the treatment of other illnesses; the holistic care of orphaned and vulnerable children; the provision of food and nutritional supplementation to households threatened by malnutrition; and job creation to help alleviate poverty.
Since the disease has an impact in every area of life, the work of the Topsy Foundation seeks to intervene commensurately. It has a vision of flourishing rural communities where people have the tools for change and where young people, in particular, are productive members of society, in spite of the impact of HIV and AIDS and poverty.
The Topsy Foundation partners with communities in and around the crossroads of the Mpumalanga, Free State and Gauteng provinces. Activities take place from a central project site at Grootvlei, in Mpumalanga Province, called the Topsy Sanctuary.
The organisation was conceptualised and founded in 2000 by Duke Kaufman, Silja Elena and Doug Maritz. The mission of the Topsy Foundation is fulfilled using inter-related programmes which operate together to help prevent HIV and AIDS and alleviate its consequences.
These programmes operate a number of inter-related projects. Frequently, the activities carried out in one project fulfil the mandates of more than one programme. It is precisely this web of intervention that is helping to bring social, economic and physical change within the communities Topsy serves.
1. To offer relief, care, medical and support services, to people living with HIV and AIDS and families who are affected by HIV and AIDS, in rural communities.
2. To provide for the needs and personal development of orphans and children made vulnerable by HIV and AIDS.
3. Poverty alleviation and the empowerment of rural women through skills training and job creation.
A Description of the Problem:
AIDS is an extraordinary crisis: it is both an emergency and a long-term development issue. Despite increased funding, political commitment and progress in expanding access to HIV treatment, the AIDS epidemic continues to outpace the global response. No region of the world has been spared. The epidemic remains extremely dynamic, growing and changing character as the virus exploits new opportunities for transmission.
HIV and AIDS is one of the main challenges facing South Africa today. It is estimated that of the 33.4 million people living with HIV worldwide in 2008, more than 67% are from sub-Saharan Africa. An estimated 5.2 million people were living with HIV and AIDS in South Africa in 2008, more than in any other country. It is believed that in 2008, over 250,000 South Africans died of AIDS. National prevalence is around 11%, with some age groups being particularly affected. Almost one-in-three women aged 25 - 29, and over a quarter of men aged 30 - 34, are living with HIV. Researchers estimate that 10.9% of all South Africans over 2 years old were living with HIV in 2008. In 2002 and 2005, this figure was 11.4% and 10.8%, respectively, showing a degree of stabilisation. Among those between 15 and 49 years old, the estimated HIV prevalence was 16.9% in 2008. The survey found the prevalence among children aged 2-14 to be 2.5%, down significantly since 2002, when prevalence was 5.6%.
Although the rate of the increase in HIV prevalence has, in the past five years, slowed down, the country is still to experience reversal of the trends. There are still too many people living with HIV, too many still getting infected. Children are a particularly vulnerable group with high rates of mother-to-child- transmission as well as the impacts of ill-health and death of parents, with AIDS contributing about 50% to the problem of orphans in the country. By 2010, orphans will comprise 9-12% of our total population, which equates to between 3.6 and 4.8 million children.
Whilst the immediate determinant of the spread of HIV relates to behaviours such as unprotected sexual intercourse, multiple sexual partnerships, and some biological factors such as sexually-transmitted infections, the fundamental drivers of this epidemic in South Africa are the more deep-rooted institutional problems of poverty, underdevelopment, and the low status of women, including gender-based violence, in society.
A portion of the work of the Topsy Foundation takes place in Southern Mpumalanga. This province has one of the higher provincial prevalence rates, being 15.4% in 2008, and with pregnant women at 32% in 2007. Given these figures, it is expected that, with the passage of time, many children in the local communities will be orphaned or abandoned.
On a social level, stigmatisation and myths still surround the disease and particularly so in rural areas. People Living with HIV and AIDS (PLWHAs) fear disclosing their status, since they may be shunned by their families and the community as a whole. People from communities which Topsy serves have on occasions been forced to leave their homes, as landlords do not want infected tenants renting from them.
The communities surrounding the Topsy Sanctuary struggle with poverty. Compounded by the fact that work is scarce, the disease prevents people from gaining access to employment. Furthermore when an infected person has progressed to the final phase of the disease, looking after their immediate families in terms of food and basic health care becomes an overwhelming challenge unless assistance is forthcoming.
The Topsy Approach:
The inter-related Programmes and Projects of the Topsy Foundation are:
1. COMMUNITY OUTREACH PROGRAMME:
The focus of the programme is to offer relief services, to people living with HIV and AIDS and families affected by HIV and AIDS, in underserved rural communities in and around the crossroads of the Mpumalanga, Gauteng and Free State provinces. This area, often referred to as a forgotten part of the country, due to its scant infrastructure and lack of large-scale industry, is home to several large rural communities situated around the towns of Balfour, Grootvlei, Villiers, Greylingstad and Standerton.
The Topsy Foundation is the only non-profit organisation of its kind with an active presence in the communities of Grootvlei, Nthoroane, Siyathemba, Qalabotjha and Cornelia. Relief services are also offered to people from other communities, including Tweeling, Frankfort, Heidelberg and Johannesburg. The Community Outreach Programme consists of several projects, which, when combined, create access to medical and social welfare services for a monthly average of over 6,000 local people.
a) The Home-Based Care Project:
Home-Based Care, Topsy’s signature project, was a major inclusion in establishment of Best Practice in this field as determined by the state-appointed National Institute for Community Development and Management (NICDAM) study.
The key to Topsy’s success has been to identify, employ and train field-workers from the community in which the project is active. By training local people as field-workers, the project gains almost automatic credibility and support from communities in which the provision of such relief services around HIV and AIDS is heavily juxtaposed against a backdrop of differing cultural beliefs and the stigmatisation of the disease in general.
All field-workers are permanent employees of the Topsy Foundation and this approach to Home-Based Care ensures quality service delivery standards with considerably enhanced continuum of care for local children and families/care-givers. Field-workers are able to establish trust and build and maintain relationships with the patients and their families - a necessary part of working with people living with HIV and AIDS.
This approach compares favourably to general practice in which many organisations have had to opt for community volunteers in the provision of their care services. Topsy’s trained field-workers are in daily contact with people living with HIV and AIDS and local families who are severely affected by HIV and AIDS as well as those who are suffering the consequences of extreme poverty and lack of access to basic community infrastructure and care. In the communities, which Topsy serves, access to health clinics, for example, is restricted to those who can physically visit the clinic and seek medical attention. For those who are in some way incapacitated, their only hope is for Topsy to offer its services through a home-visit.
Topsy’s field-workers thus offer basic medical support, and referrals to medical care, for illnesses, such as TB and pneumonia, associated with HIV and AIDS, as well as wound dressings, bed baths, bed turning and training of the family members of the patient, where available, in these tasks. They develop strong relationships with the patients and their families, give guidance, support, and provide a listening ear. In cases, where expert medical or social welfare attention is required, the field-worker will present the case to Topsy’s medical doctor or nurse and/or one of its social workers, who will in turn accompany the field-worker to the needy beneficiary and administer whatever treatment and/or counselling that may be necessary.
When not calling on specific patients, the field-workers go from house to house to offer the services of the project. They also document information about each household, such as the number of family members, how many are employed, how many children live there, levels of wellness amongst family members, and so on. This crucial information helps Topsy prepare for future needs within the area.
b) Orphaned and Vulnerable Children Project:
In 2009, the Topsy Foundation made the decision to change the name of this Project from Orphan Care Development Project, to Orphaned and Vulnerable Children Project, and extend its focus. An Orphan is described as a child under 18 years of age who has lost their mother (maternal orphan) or both parents (double orphan) - (Unicef/UNAIDS,1999). According to South African law, vulnerable children are defined as:
- children who are neglected, destitute and abandoned;
- children with terminally ill parents;
- children born to single mothers;
- children with unemployed caretakers;
- children abused or ill-treated by caretakers; and
- disabled children
Source: Smart 2003
Sadly, South Africa has one of the world’s highest HIV and AIDS infection rates and with so many people living without access to proper medical treatment and a suitable standard of nutritional intake, many continue to succumb to the disease. When adults who have been part of the Topsy Home-Based Care Project pass away, their children are placed with family members with the assistance of the government. These family members very often have the best intentions but unfortunately are unable to care for orphans in an already economically stretched household. Faced with this problem, Topsy started the Orphaned and Vulnerable Children Project.
This project focuses on offering the relevant assistance to families or community members who have taken in orphaned children, empowering the family to cope with the many challenges that the situation will require them to face.
To participate in the project, a family needs to have on hand the death certificate of the child's mother and the birth certificate of the child. The combined monthly household income should total less than seven hundred and ten Rand per child in the house, which ensures that only the most-needy families receive this critical support. Topsy's social workers are often required to assist participating families to obtain the relevant documentation and they make weekly visits to determine the needs of the new families. Support group discussion forums address common problems experienced by foster families. Free medical care is offered, as well as assistance with education.
Furthermore, with the assistance of Topsy’s trained vegetable gardener, participating families are required to develop their own vegetable gardens to supplement the food packs they will receive. This participation is key to buy-in of the project.
Children head some of the families participating in the project, since there are no adult extended family members to help out. The oldest child takes on the role of parent. In South Africa, this phenomenon of Child-Headed Households is a rapidly expanding social problem associated with HIV and AIDS, and thus a focus area for many organisations. Topsy's Orphaned and Vulnerable Children Project gives particular support to such children enabling them to continue their education, whilst raising their younger siblings.
With the Comprehensive HIV and AIDS Care Clinic, we are treating adults and children with HIV and AIDS, and so these children, as well as the children of the patients, who may not be HIV positive, are classified as vulnerable. We provide clothing, blankets, psychosocial support, medical care, etc to these children.
c) The Vegetable Gardening Project:
Topsy’s field-workers provide food parcels to those in need, ensuring that those most vulnerable are able to build up their strength through proper nutrition, and are assisted with the responsibility of feeding their families. This is important, since a person who has not eaten cannot be given medication - whilst a child who has not eaten cannot learn.
To supplement this, Topsy started the Vegetable Gardening Project. To set up the project, Topsy worked in partnership with the Food Gardens Foundation to provide training in gardening skills. The field-workers are trained themselves and in turn coach and train the families. Start-up seeds and tools are provided by Topsy. At present, in addition to the individual vegetable gardens, there are five communal vegetable gardens.
2. COMPREHENSIVE HIV AND AIDS CLINIC PROGRAMME
a) Provision of ARV Therapy Project
In September 2006 Topsy established its Community HIV and AIDS Care Clinic (CHACC) at the Topsy Sanctuary, which serves to provide care and treatment, specifically involving antiretroviral therapy to identified and eligible members of the community. The clinic team consists of medical staff and social workers, all of whom have received the appropriate, specialised training.
The Topsy Foundation has secured support from Right to Care (a South-African based NPO supported by PEPFAR). As a NPO Partner, the support for Topsy extends to the direct costs for patients on ART, as well as part contributions to salaries, supplies, patient transport and VCT. A Service Level Agreement has been signed with the Mpumalanga Department of Health which has facilitated the provision of ARV therapy and medicines for opportunistic infections.
Families caring for children are visited daily for at least one month upon commencing treatment during which the trained fieldworkers ensure that the caregiver administers the medication correctly. Each dosage given must be charted. After that they are visited regularly to follow up. This enables the Topsy Foundation to deal with all social and medical problems as soon as they arise.
b) Prevention of Mother to Child Transmission Project:
Since the start of the Comprehensive HIV and AIDS Care Clinic, Topsy has assisted women who are pregnant. Topsy formalised its Prevention of Mother To Child Transmission (PMTCT) project in 2007. An interesting fact is that since this project started, not one HIV-positive baby has been born to an HIV-positive mother who completed the PMTCT Project.
The South African Department of Health study estimates that 28% of pregnant women were living with HIV in 2007. The provinces that recorded the highest HIV rates were KwaZulu-Natal, Mpumalanga and Free State.
c) Voluntary Counselling and Testing Project:
Topsy’s Voluntary Counselling and Testing Project provides free HIV testing and counselling to members of the communities we serve.
d) Post-Exposure Prophylaxis Project:
Topsy also offers post-exposure prophylaxis (PEP) to staff and community members exposed to HIV due to needle stick injury or other exposure. This service includes pre- and post-test counselling, the provision of medication and after-care.
e) General Care for HIV and AIDS patients Project:
Topsy offers general care to patients who are infected by HIV and AIDS in terms of medical assistance for opportunistic infections. Patients are also nutritionally supported since a person who has not eaten cannot be given medication.
f) Screening for Cervical Cancer Project:
Topsy offers counselling and pap-smear tests to screen for Cervical Cancer. Patients on ARV treatment are tested once treatment is started, or when there is a clinical indication. Patients would then be referred for treatment if results show further intervention is necessary.
g) TB Treatment:
Patients get screened for TB at each clinic visit and treatment is administered.
3. SKILLS TRAINING PROGRAMME:
Training and Skills Development are an important component of working with HIV and AIDS, since it is a disease, which is exacerbated by poverty. When people have skills, they are more likely to find or create work, which provides an income, and better enables households to deal with poverty. More importantly, it creates a platform upon which AIDS awareness and education can be initiated. Without hope for the future or sufficient income to meet the nutritional needs of their families, many rural people do not consider the threat of HIV and AIDS seriously, as it is just one of many issues affecting their lives, and basic survival becomes their primary concern.
a) The Shukushukuma Beadwork Project
At the Beadwork Project, Shukushukuma Beaders, local women are taught different beading techniques needed to make designs incorporating the traditional and the modern.
Christine Fischer, a well-known Johannesburg artist manages the beadwork project, focusing not only on the training of the women but imparting essential knowledge pertaining to the whole process. This includes guiding the women through the production process, understanding the associated costing and marketing, in a drive towards entrepreneurial independence for the women.
On average 15 women are active within the project at any one time with approximately 120 having been trained since its inception in the latter half of 2002.
Each beader is her own business entity and a high regard for quality and craftsmanship remain pivotal. The products are distributed locally and internationally. In particular demand are The Topsy Tots, a trio of beaded children, exclusively designed for Topsy by Christine Fischer. Not only is this an attractive fashion accessory, but it also serves as a vehicle for raising awareness of the plight of children affected by HIV and AIDS.
Topsy’s beadwork products are sold at various outlets both locally and internationally, whilst exhibitions are often arranged at corporate venues. The Topsy Foundation does have an export licence.
b) The Tinyiko Sewing Project
Topsy has also entered into partnership with Ilithuba, an organisation which specializes in assisting NPOs in setting up and growing successful social enterprises. Ilithuba was founded by Tina Craig who has a background in Community Development and a passion for skills development.
The Topsy Foundation recognises that in order for the Sewing Project to become a highly successful social enterprise; it requires the guidance of someone with dedication and the necessary expertise to provide direction to the project and develop a product range which fills a gap in the market. Technical skills alone do not make for a successful initiative, what is needed is for the products to meet the expectations of consumers and for them to reach the market.
We foresee our goods being sold in stores nationwide as well as abroad. Our targeted and strategically developed product range will assist us in our aim to develop the Topsy products into a well known and successful brand and to develop individuals within our communities into successful, skilled breadwinners.
Early in 2009, the new plans and vision for the project was presented to individuals from the communities we assist, and they were given the opportunity to join us in building this exciting initiative.
We plan on using our beadwork items on our sewn products. In house purchasing of beadwork items from our sister Beadwork Project will mean an increase in sales of Topsy Beadwork.
Operates in: Grootvlei, Mpumalanga
Established in: November 2000
Non-Profit Organisation Number:
Public Benefit Organisation Number:
Section 21 Company Number:
Contact person: Silvia de Jager
Phone: 011 709 6806
Fax: 011 700 3032
Physical address: The Brand Building, 15 Sloane Street, Bryanston, Johannesburg
Postal address: P O Box 131163, Bryanston, 2021
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