Community Agency for Social Enquiry (C A S E) survey of HIV/AIDS service organisations
|
Eastern Cape |
5 |
|
Free State |
5 |
|
Gauteng |
21 |
|
KwaZulu-Natal |
22 |
|
Mpumalanga |
3 |
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Northern Cape |
3 |
|
Northern Province |
6 |
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North West Province |
8 |
|
Western Cape |
5 |
Several organisations have a national profile. These include:
The AIDS Helpline, a national toll-free telephone counselling service that provides information, referral and counselling to anyone infected with and/or affected by HIV and AIDS.
The Aids Consortium, based in Gauteng has members in all nine provinces. The Consortium impacts on the national arena in a number of areas, but works predominantly in three provinces.
The Treatment Action Campaign, which pursues a national (and international campaign) to secure treatment for persons with HIV/AIDS, operates in the Western Cape, Gauteng, KwaZulu-Natal and the Eastern Cape
The Arepp Educational Trust, which provides life skills education dealing with a range of issues including sexuality, substance abuse, gender issues, self-image issues, racism & HIV/AIDS through the medium of theatre.
Operation Hunger operates in all provinces except Mpumalanga, providing relief, nutrition and development assistance. Specific work with the Department of Health includes home based care services and needs analyses, which help determine appropriate interventions and priorities.
The Township AIDS Project operates in Gauteng, Free State, KwaZulu-Natal, Northern Province and the North West Province. The project provides information on HIV/AIDS to local communities through training, workshops etc. A particular focus is given to youth issues.
The MS Care Mission Society works in all provinces except the Northern and Western Cape. It has a staffing complement of seven full-time workers and 143 volunteers. MS Care provides services for the infected and affected, focusing on the needs of orphans, the elderly and the disabled.
One organisation, the Margaret Sanger Centre International SA, which is based in Gauteng, aims to provide technical assistance for the development, implementation and evaluation of sexual and reproductive health programmes throughout the Southern African Develpoment Community region.
Urban or Rural Service provision
Organisations were asked whether they serviced rural or urban areas, or both.
Five organisations said that they worked exclusively in rural areas. Three of these worked exclusively in Kwazulu-Natal, and one said they worked in rural areas of Gauteng and the North West provinces. Of these organisations three described themselves as CBOs, one as an NGO and one as a governmental service provider. Staffing at these organisations varied considerably. On the one hand there are large operations such as Tumelong, operating in Gauteng and the North West (with 81 full time and 2 part time employees), and The Valley Trust, based in KwaZulu-Natal (with 74 full time and about 30 part-time employees). On the other hand there are also small organisations such as the Bethesda Aids Action team, based at the Bethesda Hospital in Ubombo, KwaZulu Natal (with four full-time and one part-time employees), and the Gauteng-based Maboloka HIV/AIDS Awareness Organisation with (one full-time worker and 20 part-timers).
These dedicated rural agencies offer a range of services. These include counselling, orphan care, home care, condom distribution, nutritional advice, HIV/AIDS education and awareness programmes, community development programmes etc.
Five organisations said they worked exclusively in urban centres. Of these four worked exclusively in Gauteng and one exclusively in KwaZulu-Natal. Staffing levels vary considerably. Youth for Christ in KwaZulu Natal has 50 full time and 30 part time members. This is the organisation’s largest branch. Mothusimphilo in Gauteng has four full-time and 100 part-time workers. At the other end of the scale, the Community AIDS Response, also in Gauteng, has a staffing complement of two full-time and five part-time staff.
The remaining 26 organisations said that they worked in both rural and urban areas. Of these 11 operate exclusively in KwaZulu-Natal, eight in Gauteng, and a further two organisations in both of these provinces. Six organisations with national profiles and operations claim to service both urban and rural communities (M S Care Mission Society, Treatment Action Campaign, Arepp Educational Trust, Operation Hunger, Township Aids Project and the national AIDS Helpline).
Funding sources
Respondents were asked where their organisation received funding from. As can be seen from the questionnaire, respondents were able to provide multiple answers to this question. Consequently the recipients of funding from one sector have been collated, where possible. The collation provides the following picture:
19 said from individual and private donations
17 said from local corporations and business. Specific mention was made of the mining industry
13 said from foreign governments and embassies
18 said from overseas non-governmental organisations
12 said from national government. Seven organisations said they received funding from the Department of Health. A further two received funds from the Department of Social Development (Welfare). Cotlands received from funds from both Departments and Sparrow Ministries received from the Department of Health, as well as from the Departments of Transport and Public Works. One respondent failed to provide this detail.
15 said they received support from provincial government. Of these, three also received funding from national government (Mothusimpilo, Tumelong and the Cotlands). Eight organisations received support from the provincial Departments of Health and three from the provincial departments of Welfare and Social Development. Two organisations (Operation Hunger and Township AIDS Project) received from both. Two respondents failed to provide relevant details.
Four organisations (Hillcrest Aids Centre, Mothusimpilo, AIDSLINK, and Cotlands) received funding from local government
Nine organisations said that they received some financial support from the communities they serve. This includes The Vaal AIDS Home Based Care, Orange Farm Anti-AIDS clubs, Maboloka HIV/AIDS Awareness Organisation, Tumelong and Sparrow Ministries.
Other sources of funding include the churches, the national lottery, charging for services rendered, monies recovered through medical aid schemes and other income-generating schemes. With the exception of the Soweto Youth Drama Society, who mentioned that they had received funding support form the Nelson Mandela Children’s Fund, and Operation Hunger who said they sourced some funding through the Mvula Trust, no other mention was made of receiving monies from domestic funding agencies.
Most organisations receive funding from a range of sources. Government funding has become increasingly important in this regard. The national and provincial Departments of Health are the primary funder for a number of initiatives, including the National AIDS Helpline, the Chatsworth Child & Family Welfare Society and the Siyaphila CBO. Most organisations we spoke with get support from government as one of their funding source.
Difficulties in raising funds and and obtaining other resources for service provision activities
According to one NGO in Northern KwaZulu-Natal: ‘In this part of the country everything has come to a standstill because of a lack of funds …. There is a lot of big talk, but very little action’
General
Only five of the 35 organisations said they had not had any difficulties raising funds. These were Bethesda AIDS Action Team, Margaret Sander Centre International SA, Treatment Action Campaign, Targeted AIDS Intervention and the Usizolwethu United Churches.
The remaining 30 organisations indicated that they had experienced difficulties with funding. This, in turn, has a negative impact on these organisations’ ability to maximise their potential, tackle priorities and meet objectives.
In the context of increasing needs, service provision needs to be and can be expanded. Several organisations called for more attention to be paid to support services and skills development. These ranged from computing and administrative training to counselling, care skills etc. Funding problems are compounded by limited fund-raising and programmatic development skills. Many organisations complained of being acutely understaffed. In this regard, several organisations emphasised the importance of engaging people from the communities being served as an essential component of integration and 'mainstreaming' HIV/AIDS issues within communities.
Several respondents raised their concerns about the general context in which the pandemic is being addressed. For some people it appears that HIV/AIDS is not the priority, or even a priority. Consequently it has been difficult to sustain significant donor funding, as donors are faced with competing requests for many worthy causes. The competition has put a strain on what is available as it is carved up between the needs. There are also concerns that the situation is compounded by donor fatigue, as this problem seems just the latest in a long list of problems affecting the continent. To a certain extent this is likely to have reinforced negative images of Africa and its peoples. A major frustration emerging from failed funding proposals is the almost complete lack of opportunities to explore reasons for non-funding and the rejection of proposals.
The time and resource consuming process of fundraising was raised by several organisations. This was especially the case with larger organisations that need to secure considerable funding to maintain their large operations. The National AIDS Helpline pointed to the impact that delays in getting awareness campaigns off the ground have had on the number of calls and enquiries they receive. The respondent in this case pointed out that the tender process delayed the overall process in this regard, and consequently had a negative impact on spreading information about available services.
Government funding
Concerns were raised about government funding, which is often regarded as inadequate and inconsistent. Most organisations called for an increase in government funding to the NGO sector. Some organisations complained that they received funding one year, but not the next, and that this had had a serious affect on certain programmes and consequently the beneficiaries.
The Department of Welfare was accused of being very slow and unfocused with regards to processing proposals. Some organisations complained that they had applied to government for funding, but had received no response. Others had their applications rejected without explanation.
Inconsistent government funding affects the sustainability of particular projects and programmes. This is not just a problem with government problem. The Orange Farm Anti-Aids Club was able to employ staff in 1998 when it received funding from the Gauteng provincial government, as well as from proceeds collected in conjunction with the National Soccer League-IWISA soccer spectacular. When the funding ended, so too did the employment of paid staff. The Club now has to rely on volunteers. It continues to function, but not at full strength. One organisation expressed the difficulties of securing government funding by saying they had had enough of ‘being treated like beggars’.
Several very specific complaints and concerns were also received. A small NGO based in KwaZulu-Natal, which has received some funds from the national Department of Health, complained that government requirements stipulated that they should utilise the services of a chartered accountant, which was very expensive.
International donor funding-
Concerns were raised about the diversion of donor aid in the post-apartheid era. Some organisations said that some donors feel there are adequate resources internally within SA, particularly when compared with some neighbouring countries. In addition, the shift in funding in the post-1994 period to the government sector had compounded funding options. The delays and other problems experienced in relation to the government’s parastatal funding agency, the National Development Agency, have added to the problems..
Several organisations pointed out that donor requirements are quite stringent. In some cases there are difficulties associated with having to tailor activities to the requirements (and sometimes priorities) of donors. Consequently, some organisations (i.e. Arepp Educational Trust) struggle to find donors who are prepared to fund their kind of work. For some organisations it is not the issue of how much money that can be raised, but more particularly problems in raising adequate funds for specific activities due to associated restrictions in the freedom to direct funds where most needed because of donor ‘directives’.
According to some respondents, donors do not like to fund core costs, such as for staff salaries, rental, capital equipment and so on. Their preference is to fund ‘projects’, which also provide a more convenient ‘exit strategy’. Whilst the donors provide much-needed funding, the project strategy impacts on the longer term sustainability of various initiatives. One Gauteng organisation complained that after three years of receiving funds from one international donor, the funding was cut. As it has subsequently been impossible to make up the shortfall from other sources, services have been compromised. The Township AIDS Project also said it was faced with severe problems in trying to find additional income sources after grants from the Norwegian government were not renewed after nine years of support.
There was criticism that some funders place unrealistic demands on the organisations they fund. The AIDS Consortium, for example, complained about European Union funding which requires dedicated staff and a diversion of resources and time to meet their requirements
Some organisations felt that donors have ‘pet’ or ‘preferred’ organisations which makes it difficult for more recently established organisations to secure the required support. Some others felt that donors simply don’t like to fund smaller organisations, and especially CBOs.
Domestic donors
Very little information was provided regarding the funding situation as it relates to domestic donors. One complaint was received about the National Development Agency. The complaint came from an organisation that had submitted a funding application two and a half years ago, yet it had still not been approved (or rejected).
Private sector funding
Accessing funds from the private sector for HIV/AIDS work has proved exceedingly difficult. HIV/AIDS is a relatively ‘new’ area, and (as with the general public) many businesses are yet to appreciate its significance. There has been some funding in this sector. Although there is no detailed information on what they currently support, allegations were made by one respondent that business will donate for awareness and training (i.e. the more hopeful activities), as opposed to supporting care for the dying. The situation varies but, to date, very few companies have developed working programmes for their staff, let alone in respect of their social responsibility programmes. Further, many companies already have their other pet ‘charity’ projects to whom they give money.
Several respondents pointed out that accessing private sector support is a very long drawn-out (and often unsuccessful) process that digs into time and resources. Companies are inundated with requests for assistance and this competition means that many needy organisations don't receive support. According to some respondents, the private sector does not necessarily provide the funding panacea many organisations are looking for.
Other difficulties
Related to the funding problem already touched on above is the widespread indifference within society towards the subject of HIV/AIDS and those who are infected and affected. This is compounded by problems of stigma, which impact in a variety of ways. Some organisations, for example, point out that their work is not always visible, because of the need to maintain client confidentiality. In such instances these organisations can only rely on generic examples to promote awareness and fundraising initiatives.
Another considerable problem is the inefficiencies of decision-making processes in most donor, grant-making institutions organisations.
Other sources of support
Respondents were asked whether their organisations received any other resources or assistance apart from funding, such as equipment, subsidised materials, free premises or any other donations etc.
Twenty-two organisations said that they received additional support from other sources. Fourteen of these said that they had experienced difficulties in accessing this sort of support. Additional resources have been obtained from major government, corporate and donor sources through to limited funds raised from within the (largely) impoverished communities they serve. Consequently some of the most needy organisations are the most poorly resourced.
While some organisations have been successful in accessing alternative sources of support and additional resources, others have not had such good fortune. Some of the more recently established organisations appear to have the greatest problems, perhaps because they have not yet established their name and reputation. Community AIDS Response for example, which was established in November 2000, complained that they have been unable to get second- hand equipment and have been forced to buy many things brand new. This contrasts with AIDSLINK, which was established in 1991, and which has secured equipment donations from the corporate sector.
In a context of limited funding and support, many organisations have sought to access additional resources and assistance from alternative sources. This has resulted in some corporate funding for service ‘support’ activities, such as the provision of a vehicle, computer equipment, and generators for the Ethembeni Care Centre in KwaZulu Natal
Some NGOS receive additional assistance from the government. The National HIV/AIDS toll-free telephone line, for example, had their services promoted through promotional and awareness campaigns run by the Department of Health. Some government-funded organisations, such as the Bethesda Aids Action Team, have received educational and promotional materials (posters, pamphlets etc), infrastructural support (offices) and transport assistance from government.
Other assistance from government sources includes condoms provided by the Department of Health; the use of mobile clinics provided by local authorities; and subsidised rent for offices at local hospitals. The following examples illustrate how different organisations have received some form of support from government sources:
The Johannesburg City Council has provided premises for AIDSLINK. The council also pays one of the staff salaries. AIDSLINK also received equipment donations from the corporate sector in Johannesburg.
The Usizolwethu United Churches have been provided with premises at the state-run Dukuza clinic, as part of broader support provided by the Provincial Department of Health.
In some rural areas, the tribal authorities have also offered assistance. The Maboloka HIV/AIDs Awareness Organisation, for example, has been given the use of a caravan by the tribal authority in which to base its operations. Although in need of renovation, the caravan provides an important location from which to operate and reflects the tribal authority’s commitment to addressing the pandemic.
Several organisations had secured materials (T-Shirts, posters etc) from the government-sponsored Beyond Awareness Campaign. There have, however, been complaints about difficulties and delays in accessing these materials, which must be obtained through a central warehouse in Johannesburg, and can take months to arrive. This was of particular concern to organisations operating in other provinces (such as KwaZulu-Natal) where the pandemic is widespread.
Some organisations have managed to ‘piggy back’ their operations on other organisations, and have been able to share offices and resources. This can, however, create problems. The Community Action Project shares premises, but is unable to work after hours or on weekends, as their access to the building is dependent on the host organisations.
Several organisations have received support and assistance from the private sector and churches. This includes:
Hygeine materials from the Colgate Foundation and food parcels from the South African Council of Churches (Friends for Life).
Food from Nestle (Operation Hunger).
Metrorail provide funding for rent, telephone and electricity & provision of free transport (M S Care Mission Society).
Sometimes, what is provided opens the door to a range of important subsequent developments. The Young Women’s Christian Association in Northern KwaZulu-Natal said that they had been provided with a site on which local women built a school for mentally handicapped learners. Some parts of the premises are used to run an income-generating poultry project. Other parts are used for counselling youth on HIUV/AIDS and other youth activities
A reliance on additional support and donations can generate certain difficulties, especially if the provisions are not well matched to the needs.. Cotlands, for example, explained that on several occasions they have received adequate supplies of clothing, but not enough nappies or food.
Suggestions as to how government can assist organisations to provide services so as to help people, household and communities affected and infected by HIV/AIDS
‘If government does not know yet what they should be doing we are lost! The time for efficient service delivery is passing us by!! Government must act now. Pilot projects are over. Replicating effective implementation and delivery must happen now. The government must stop sitting on millions of rands. Children with HIV are a priority.’
The following is a list of comments, suggestions and recommendations that were put forward during the course of this research. They are not in any particular order of importance or priority.
Government must issue an unequivocal statement from government that HIV causes AIDS in order to dispel any confusion caused by furore on President Mbeki’s questioning of the link.
Government must put more resources into its awareness and prevention campaigns. Funding is required to sustain and develop services being provided (from home-based care, to counselling, to awareness training). There has been a consistent call from survey respondents for government to enhance capacity building efforts, as well as providing support of core operating costs where other funders are reluctant to provide support.
Government must increase the number of people working with service provision, especially including and involving (on a professional, as well as voluntary basis) people from the communities that are being served
Government support through the NDA and other process must help to increase the capacity of local non governmental and community based organisations to engage with a range of interest groups (i.e. local authorities, provincial government, business, donors) to secure support to develop range and capacity of primary services. This will help to focus on delivery on the ground.
Government must establish itself or fund others to establish drop-in centres that can provide required information on HIV/AIDS related matters. These centres should be in addition to the national One Stop Centres being established by the Department of Welfare and Social Development in collaboration with local authorities. Specific attention should be paid to rural areas and consideration might be given to ‘piggybacking’ on existing infrastructures, such as churches, civic structures and advice offices.
‘Help us make government realise that self-sustainability goes hand-in-hand with training and infrastructural support for NGOs like ours. It is never an event.’
Concern was raised about the infrastructure and capacity of organisations working in the sector to address a range of pandemic-related concerns. Government should channel some of its funding to organisations that provide technical support for the development of skills and improvements in the broader delivery of services. In particular, attention should be paid to building the capacity of CBOs, especially in areas such as fund raising, how to write proposals, as well as helping to develop and facilitate potential funding channels. More attention must be paid to the potential role and responsibilities of different tiers of government in this regard. Priority attention should be paid to the poorer areas of the country. It should also be recognised that the pandemic needs effective management and full-time paid workers.
Several organisations felt that government was well positioned in terms of improving the coordination of services relating to the HIV/AIDS pandemic. In addition, it was suggested that government is best placed to develop a comprehensive overview of services, and consequently available capacity and existing obstacles. At present there is no detailed overview of what organisations are actually doing on the ground. This will require an audit of AIDS service organisations. Information should be also analysed against the background of government services in the area. Particular attention should be given to rural areas, where many initiatives have not been recognised or documented. A comprehensive overview will assist government determine in which areas it needs to develop and/or support infrastructure. As part of this process, information can be gleaned from government departments (i.e. Health and Welfare) with regards to those NGOs they have given money for regarding HIV-related work. This information is necessary to facilitate targeted interventions in the most needy areas (geographical and issue based). It was also suggested that service provision regarding HIV/AIDS, should be integrated with other sexual and reproductive health programmes and initiatives, where relevant.
A number of CBOs operate on a shoestring budget. Although they can be extremely effective, even with limited financial support, their potential is undermined by practical problems related to transport and a lack of promotional and educational materials. CBOs, particularly in rural areas, have vast geographical distances to cover. This makes transport a pivotal component, especially for the provision of home-based services. Government (and other funders) must therefore tailor their support.
Government should take responsibility for monitoring and making publicly available information on the types and quality of services being provided.
Government must develop clear policy guidelines and training for health care workers (including doctors) in developing acceptable standards and procedures in relation to care, support and treatment for people living with AIDS.
Attention should be given to fast tracking funding proposals through key government departments (i.e. Health & Welfare) and training for relevant staff to facilitate this.
Government should assist with the lobbying of certain sectors in the private sector to get more involved in supporting different aspects of the work, for example prevention work through to care giving to terminally ill.
Government should rely on information provided by service providers on the ground who often have a more accurate assessment of needs. In other words, government must become more sensitive and flexible to needs as articulated, as opposed to dictating what are the priorities. This necessitates a greater degree of dialogue and communication between grassroots and government, but also a shift in terms of government accepting and being open to influence by grassroots knowledge and experience.
Government should encourage schools to make use of ‘alternative’ educational tools, such as theatre, which has proven to be a powerful medium in the broader prevention initiative.
Government should introduce tax breaks for companies providing money for work in HIV/AIDS relates issues.
There should be tax breaks for NGOs working in the sector, especially those working on provision of services.
Particularly in rural areas, the government should provide support for processes that engage and develop relationships between tribal and traditional authorities, NGOs, CBOs and government initiatives addressing the pandemic.
Government should assist organisations to develop appropriate media materials.
More resources should be targeted at the development and sustaining of the primary health care infrastructure.
Government should improve management of its own clinics. This would enhance the interaction and integration of services with non-governmental services working in the same sector.
Government should have programmes that focus on addressing stigma. TV and radio adverts should state unequivocally that HIV/AIDS is a manageable and treatable disease and not a death sentence
Government should provide free or subsidised office space at hospitals, clinics and other appropriate venues to facilitate face-to-face counselling.
Government should improve coordination and communication between three tiers of government and relevant departments at national and provincial level in order to facilitate an integrated response to the pandemic.
Government should facilitate and ensure effective coordination and communication between international (government and NGO) donors, to maximise the benefits of international assistance.
There is considerable frustration with government funding initiatives (or the lack of them) especially amongst CBOs operating inside townships, informal settlement sand rural areas. Several respondents expressed profound concerns that government was not aware of what they were doing, automatically rejected their funding proposals, and instead favoured established (and frequently urban-based) NGOs who talk the language of funders. These respondents feel that this reflects fundamental ignorance about activities on the ground.
Government should provide funding to facilitate the inclusion, development and sustainability of a meaningful voluntary sector as this is much needed in the fight against the pandemic). Although many people are willing to give their time and expertise, it should not be expected that they should subsidise their own involvement (transport etc), especially amongst communities with high levels of unemployment and poverty. These people need some sort of incentive. A failure to provide this feeds concerns about a culture of exploitation in which voluntary support will not be sustainable.
Some groups have experienced problems accessing school premises and are faced with school administrators /principals who do not want to accommodate extra-curricular activities. The Department of Education must give permission for such activities, and should continue to develop the inclusion of HIV/AIDS awareness and related issues as part of curriculum. This should not be treated as a once-off process. Learners must be appraised of developments in the pandemic as they go through different phases of schooling
Government must make the National Development Agency a more efficient, effective and focused organisation that prioritises HIV/AIDS related work, especially in the development of organisational capacity (i.e. financial and project management, fundraising etc.) as well as training in a range of skills, administration, computers etc.
Trainer training is crucial to augment the number of people working in the field. Recipient organisations should include religious groupings (formal and informal) as churches and other religious and faith communities have a much bigger role to play.
There is a need to ensure that information on what is happening in communities is fed into policy and intervention strategies. Several CBOs pointed out that they did not have skills and expertise to utilise their information and knowledge within a research context. Consideration should be given to how best the knowledge and experience of CBOs can be drawn into broader research processes. This would, on the one hand, ensure that information from these ‘coal-face’ organisations is secured. It would also enhance skills and capacity in basic research methodologies and report writing by the CBOs.
Government should provide low cost anti-retrovirals, especially to pregnant women.
Government should provide access to clean water, particularly in rural areas.