Community Home-Based Care: briefing by Health/Social Development Departments

Meeting report

SOCIAL DEVELOPMENT PORTFOLIO COMMITTEE; HEALTH PORTFOLIO COMMITTEE
23 May 2001
COMMUNITY HOME BASED CARE

Chairperson: Mr Saloojee

Documents handed out:
Presentation Slides on Home Based Care in the Community

The presentation team:
Department of Social Development
Jacques van Zuydam - Chief Director: Population Unit
Thembi Nwedamutswu - Acting Director General
Dr Maria Mabetoa - Director: Children, Youth and Family
Yvonne Marafe - Advisor to the Minister
Ms M Ngcobo-Mbere - Director: Finance & Admin - Poverty Relief
Thembu Masilela - Chief of Staff in the Minister's Office

Department of Health:
Ms N Matsau Deputy Director-General
Colin Bonnecwe Director: HIV/AIDS
Cornelius Lebeloe Deputy Director: HIV/AIDS Care and Support

SUMMARY
The Departments of Health and Social Development made a joint presentation on the subject of Home Based Care in the Community. The presentation was an overview of the objectives of the Community Home Based Care project, whilst the Committee had been expecting outlay figures, progress reports and feedback on specific projects. The presentation was thus shortened and during question time it became obvious that the presenters did not have the information that the Committee had been expecting. The Committee insisted that another meeting, with both Directors General present, be held on the matter.

MINUTES
Home Based Care in the Community presentation
Chairperson Saloojee welcomed the members and the presentation team and said that the issue of Home Based Care was one of great importance, as is many issues surrounding the HIV/AIDS epidemic.

Ms Matsau explained that Home Based Care in the Community was a joint strategy between both departments, so the whole strategy was to be presented as one, with questions taken separately.

Ms Nwedamutswu further explained that she would present the joint strategy, and that Jacques van Zuydam would present the recent statistics on HIV/AIDS.

Ms Nwedamutswu presented the strategy (see attached). During the presentation of the strategy, the Chairperson of the Health Portfolio Committee, Mr Abe Nkomo, objected to the reading out of the presentation, and asked that the team simply give their report on what is happening with Home Based Care today. However, as the presentation was nearly at a close, Chairperson Saloojee asked Ms Nwedamutswu to carry on.

Mr van Zuydam then presented some interesting statistics on HIV/AIDS. He explained that in 1999 he had been invited to present to the committee about the impact of HIV/AIDS, and will now pick up on this presentation. The statistics come from the projections of data sets, generated through prenatal clinics, and registration of deaths. Although projections cannot be expected to be completely accurate due to their nature, their reliability is increasing through various tests.

To provide a general sense of the trends: at the moment there is an estimated 43 million people in South Africa, 5 million of whom are HIV positive. By 2009 it is estimated that 6 million people in South Africa will have died from AIDS, most deaths will occur in the 20 to 35 age group. Women are in the majority of HIV/AIDS victims, especially in Sub-Saharan Africa, which is a profile that is different from anywhere else in the world.

The result will be that the population will stop growing, possibly within a decade, although others have projected within the next 20 to 30 years, which is unprecedented in Africa. Dependency ratios will change. The children's population level will stabilize; the elderly population will continue to grow, which had implications for social development. Child population will stop growing in real terms, but proportionally will continue to grow. A growth of people in vulnerable groups will be noticed, while a decrease in caregivers will also be seen. People are caregivers directly as parents and guardians, and indirectly as taxpayers.

Research is being completed on the impact of the epidemic, specifically around households. Usually the main income earner is the first person infected within the household, who then becomes sick and unproductive. The children become drawn in to the caring of the sick household member, and therefore cannot go to school or earn an income. The second adult then becomes infected, one of the adults die and there is no money for school. Children are then out of school and are scrounging for money. The household then begins to disintegrate.

There is an active research programme between the two departments to inform policy and Home Based Care models.

Discussion
Ms M Mnumzana (ANC) said that she would have been more comfortable if the presenter had given a definition of Home Based Care. What is Home Based Care, and who qualifies for it? In terms of the allocation of R450 million, where is the money going? She was concerned about the practice of outsourcing, as it means that money is going out. She asked why it was that the Departments wished to outsource, and what analysis needed to be done. Dr Mnunozana also asked about the training of trainers, what did this mean? Why are funds being rolled over, we are facing a pandemic, so a rollover is inappropriate. She also asked if the public would understand the Public Finance Management Act (PFMA) and enquired if perhaps the government were making it too difficult for people to access money. Home Based Care must be made as easy to access as possible. A mother at home must be able to have access to this project.

Response: In terms of overhead costs of outsourcing to NGOs, the PFMA will assist in limiting overhead costs, and only 10% will go to overhead costs. The team agreed that there have been problems in the past, but believed that they can correct them.

Efforts are in progress to simplify forms and fieldworkers are there, but the government also has a responsibility to account for funds.

Dr Matsau said that they also have concerns about how accessible the funds are. Experience in other projects show that funds are often released too late and business plans are often not understood. They have made an effort to go to communities who will need business plans and develop plans with them that will suit the Treasury. But rollovers are still occurring. Reimbursement only occurs if accounting is deemed adequate. One person is specifically monitoring all expenditures. Outsourcing related to this, and it is not the desire of the department to outsource as money is wasted. The department has tightened screws on agencies.

Chairperson Saloojee highlighted inadequate staffing, incomplete outsourcing and the magnitude of the problem, and asked what could be done to alleviate the problems.

Ms Matsau said that parts of the strategy can be implemented, but that some areas cannot be left to implement the strategy themselves because of under capacity. Therefore outsourcing is one way to police the implementation of the strategy. Other, more innovative ways are being sought.

Dr B Mbulawa (ANC) asked the team to explain the discrepancy between R450 million and R55 million.

Ms Nwedamuswu explained that the R450 million is for the entire strategy around the issue of HIV/AIDS, which includes life skills, voluntary testing and counseling. The R55 million is specifically for the Home Based Care programme. Three programmes are to take place concurrently in communities.

Dr Mbulawa stated that she needed to see a breakdown of the precise information and that she found the presentation very disappointing. What models were the team talking about, were they simply an academic exercise? If so, implementation is not practical. The team referred to challenges and blockages in their presentation, so what are the answers? The report mentions that children will be presenting their thoughts and opinions to the politicians at a forum, but where is the community in this? The problems with the business plans and the rollovers happen every year, why? The whole report is very disappointing.

Ms M Malumise (ANC) asked how home visits take place. Home visits have been curtailed. Nurses cannot even follow up DOTS as there is no transport, so how will home visits take place?

Ms M Njobe (ANC) said that Dr Mbulawa had already covered some of her points. She enquired about capacity, what programmes are there to develop and improve human capacity? She did not agree that there is not enough retired personnel, but rather their whereabouts are unknown. How are sites for programme implementation identified, what criteria is used? Home Based Care is needed as too many people are being dumped in hospitals.

Mr Lebeloe explained that sites are selected by the level of poverty present and the high rates of HIV/AIDS. The sites are selected by provincial governments, and not at the national level.

They have examined the issue of capacity levels and have looked at how best to develop these levels. The department is now in the process of trying to appoint co-ordinators at a community level.

Dr Yvonne Marafe said that one forgets that people themselves have strategies where the government fails them. People have initiative. People have been able to come up with structures to address Home Based Care themselves, particularly in the rural areas. There the retired nurses have been taking care of orphans and the ill before the department realized that there was a problem. They are strengthening their links with through KwaZulu Natal. An informal network already exists, including faith based organizations. These are forgotten about, but they are already looking after many people.

People are asked to submit business plans in their own language in order to help them.

Ms P Cupido (ANC) stated that most of her concerns had already been addressed. What does the department plan to do about the stigma that is attached to the disease? Also, what process do you plan to follow about faith based organizations, they cannot be located by Mrs Cupido's office, so could names be provided?

Ms J Chalmers (ANC) said that she would like to support the last statement, people are always coming up with plans, such as faith based organizations, but they are not getting support and links are not being made. She had heard of community based care projects having to close down due to lack of support.

Mr B Solo (ANC) asked about capacity, and said that he had recently met with 25 priests who had asked him what they could do to help the situation, but he had not known what to tell them.

Dr Mnumzana asked about the trainers, and how is the money being monitored. She pointed out that the NGO's seem to be receiving money, but that it fails to get to the people.

Ms S Baloyi asked for a definition of Home Based Care to be included in the handout. He pointed out that the project is difficult to roll out, lacks specify, does not mention the deliverables, and does not specify the responsibilities of each department. How can they then measure what has been done? There must be a focus on a definition, which should be refined.

Response: Stigma arises due to lack of information and fear. There is a remarkable level of awareness amongst the South African public of issues surrounding HIV/AIDS. They are currently working with organizations to remove fears. They are addressing funerals, celebrities are addressing people, and high social standing people have been asked to reveal their status.

The department will supply the information on faith-based organizations.

Dr Mbulawa said that the intentions of the department are good, but facts must be there. Woman must have access to Home Based Care.

Ms Nwedamuswu said that with due respect, the department cannot reach every corner in South Africa. Members of Parliament are all partners and when information is given directly to the department, the Department responds to this. She requested them as partners to come to the department.

Chairperson Saloojee interrupted Ms Nwedamutswu and asked her to confine herself to the questions that were posed.

Ms Nwedamutswu said that the department would provide a list of places to send people who were asking to help.

Chairperson Saloojee welcomed this, and said that it was useable information.

Ms Nwedamutswu pointed out that the information had already been outlined, but if it was missed then she would appreciate it if someone let her know.

Chairperson Saloojee asked the team if they would please respond to all the questions that had been asked of them.

Mr Lebeloe said that the training rollout was jointly done by both departments.

Mr Bonnecwe asked Mr Solo for specific problems, but Mr Solo said that he would not elaborate, and that he has a list in his office and he wants answers to his queries.

Dr Ntuli said that as MPs, they were in touch with communities and observed many initiatives faced with problems. People do not know where to go for support. Could this be made more clear to communities.

Ms S Kalyan (DP) said that they were missing their target group. If a business plan is rejected it then goes back and forth until the necessary information is found. How can you explain this delay to a family. What is the timeframe and who is responsible? How long has the provincial co-ordinator post been vacant. Why can you not find a suitable person to fill this post?

Ms Chalmers asked what criteria is used to obtain a disability grant, and can they be fast tracked for bad cases?

Response: Ms Matsau said that most potential beneficiaries of grants are unaware, and that the department needs to discover how to make itself more visible, it needs to be more aggressive.

Home Based Care is intended to shift away from institution based care. Not to get infected people in another place, but to keep them in the home, cared for by family members, assisted by a nurse. There is funding for a stipend for people who provide support within a family.

Mr Bonnecwe pointed out that Home Based Care services are not a new phenomenon, and has been going on for a long time in the communities.

Chairperson Saloojee called a point of order and stated that the members did not want generalizations but facts and figures that will give an idea that what is on the ground is being dealt with. They can share ideas afterwards, but how can they go forward? He said that it is very good that this discussion is happening so that the Committee can tell the team exactly what is needed from them in terms of information. Next time both Directors General should be present.

Ms Chalmers asked if some sort of aid grant is being considered.

Ms Matsau apologized for the misunderstanding, and explained that the team was not yet at the stage where they have put the programmes together. But concepts have been developed and areas of responsibility for each department have been outlined.

Chairperson Saloojee asked for a response to Mrs Chalmers' question.

Ms Nwedamutswu said that there is no grant for people living with HIV/AIDS but a disability grant is available. All they need is a letter from their doctor saying that they are incapacitated.

Ms Mnunozana said that her daughter is a doctor and that patients with this letter are being turned away from the pensions office.

Dr Ntuli said that the pandemic is running amok and that the Department of Health should be quicker in its response. The situation on the ground is desperate. He urged the department to move quicker. He has also referred very sick people from his private practice to receive the disability grant, yet they had received nothing.

Ms Mbulawa said that it was very frustrating and that the department is experimenting with people’s lives. She urged the Chairperson to close the meeting and to return only when the DGs are present.

Chairperson Saloojee asked if the team could provide the information on the six pilot programmes and suggestions on how to go forward.

Response: Six sites have been identified orphans and providing to their needs.

The Chairperson agreed that they must meet again for precise answers. A substantial meeting was necessary. He will therefore consult with other members and get their concerns. He asked the team to give a message to their respective DGs, that questions will be written down so that the next time the team can give the type of presentation that is needed. The Committee sees itself as partners in this process.

The Chairperson of the Health Committee, Mr Nkomo, said that he had sensed an irritation from the team about the questions they were being asked. The team must remember that the MPs are a reflection of what is being felt out there in the communities in a more concentrated manner.

Chairperson Saloojee thanked everyone and closed the meeting.