The Black Sash, the National Association of People Living with HIV/AIDS and the AIDS Law Project made submissions on the Social Assistance Amendment Bill [B5-2010].
The Black Sash Trust objected that the time between publication of the advertisement and the closing date for submissions was too short to prepare thoroughly for written submissions. It also felt that the choice of media was unsuitable; since the target audience did not read those publications en masse .The Easter weekend also fell between these two dates, which meant that people were busy with religious activities. The submission focused on the amended definition of disability in the Bill and its implications for the chronically ill. Currently many chronically ill people received disability grants. When the Bill became law, many would not be eligible anymore and would loose their disability grants. Instead the Black Sash proposed a chronic illness grant.
A Member of the Congress of the People said that the Black Sash had confused disability and chronic illness: a chronically ill person was not necessarily disabled. Black Sash’s recommendations were good, but needed some in-depth discussion. There was a difference of opinion between the Black Sash and an African National Congress Member on the definition of “chronic”. Another African National Congress Member said that chronic illness did not mean disability. Even disabled people were turned down for grants, because in some cases they were fit to work, for example people who had lost an eye or an arm. All disabled and chronically ill people in the country together could add up to 50% of the population. Could the Government afford it? Those who were chronically ill and healthy as well as those who were disabled, but able to work, had to support themselves. The Black Sash responded that it wanted to widen the social net, so that those in need of social assistance were provided with it, and broadly supported the Committee’s views but wanted more discussion.
The National Association of People Living with HIV/AIDS lobbied on behalf of its constituents, people living with human immunodeficiency virus and acquired immune deficiency syndrome. The Association endorsed the Black Sash’s submission and reiterated the call for a chronic illness grant. Many people died not because of HIV and AIDS but because of lack of food and other basic needs and services. It was clear that HIV was harsh and brutal to people who were socially and economically distressed and depressed. The Association was not advocating for dependency. However, whilst there were no jobs or income, social grants became a huge, important and positive relief. The Association therefore advocated for a social assistance entry and exit system. The Association supported the chronic illness grant. However, it submitted that any intervention should ensure that the amount was not less than R1 000 per month. The money was not only for food but also for expenses incurred in going to collect treatment, for medical check up, paying of electricity and other basic services. Social grants contributed to economic development. Any treatment, particularly for chronic illnesses, worked better with food.
A Congress of the People Member argued that all departments had HIV&AIDS budgets and must use them effectively. The support groups were just talking. They had to implement plans and strategies to rescue the people. A young woman in her constituency was participating in the programmes, was working and healthy. All people, even those in the deep rural areas, could live like that. It was part of NAPWA’s brief, in her view, to educate people about how to maintain their quality of life, irrespective of where they lived. It was important for the Committee to get information on allegations that people living with HIV and AIDS were subject to corrupt doctors so that, when the Committee conducted oversight visits, Members could verify these matters of concern. An African National Congress Member said that there were people did not use their medication and became disabled. It was fraudulent if a person received ARVs and did not use them.
The AIDS Law Project stated that the current definition of disability was vague and the law’s application left to the discretion of administrators. This lead to an unequal application of the law, which caused many eligible candidates to be excluded from receiving the grant, and a subsequent huge number of appeals - a backlog of 47 000 cases. The Project proposed a tighter definition of disability to lessen the administrator’s discretion and thus provide for a more uniform application of the law with a smaller margin of error, as well as streamlining the appeal process. The Project told the Committee that the Cabinet had in 2007 approved the National Strategic Plan for AIDS, which had been developed under the auspices of the South African National AIDS Council. Under this plan the chronic illness grant was an important and integral part of the national strategy to combat human immunodeficiency virus, acquired immune deficiency syndrome, and tuberculosis.
An African National Congress Member noted that most submissions recommended the inclusion of chronic illness in the Bill. All the other concerned departments would have to respond. The Ministerial Committee would have to look at it as well as the inter-governmental committees. The Chairperson asked what a reasonable period would be for decisions on appeals. The Project concurred with the Supreme Court of Appeal that 90 days was reasonable. The Department asked whether the Project had a suggested definition for disability. The Project said that it could be provided.
The Department of Social Development (DSD) and the South African Social Security Agency (SASSA) were represented by several senior officials.
Mr Nkosikhulule Nyembezi, first Advocacy Programme Manager, the Black Sash Trust (BST), said that the organisation became aware of the public hearings through an advertisement in the Mail & Guardian on 01 April 2010. It was alleged that the closing date for submissions was misprinted. He advised the Committee to improve its communication with stakeholders. Preparation for submissions was strenuous due to time constraints. He believed that other organizations which would have made submissions did not do so, as a result of the short time given. Because of the ongoing relationship between Parliament and civil society, the Black Sash encouraged the Committee to make use of other methods of communication. The Black Sash welcomed the opportunity to make the presentation. The Black Sash had assembled the submission in consultation with network organisations like the Treatment Action Campaign, the Alliance for Children’s Entitlement to Social Security (ACESS), and other advice offices. Some of these organisations had endorsed the report. The Black Sash expressed the hope that the submission would make a positive contribution to the process.
Ms Ratula Beukman, second Advocacy Programme Manager, the Black Sash, said that the organisation based its submission on two main areas, but there was a third area that was not in the submission that she would include verbally (see attached document).
The submission firstly dealt with the Bill’s proposed definition of disability and its implications for those with a chronic illness.
Secondly it dealt with the Bill’s proposal with respect to reconsideration and appeal.
The third item was not in the written submission, and was the only verbal addition to it. It dealt with grant-in-aid as the Department had proposed in the Bill.
“A person is, subject to Section 5, eligible for a grant-in-aid, if that person has a disability and as a result requires regular attendance by another person.”
Previously it had read:
“A person is, subject to section 5, eligible for a grant-in-aid, if that person due to their physical or mental condition or requires regular attendance by another person.”
The word “or” had been replaced by the word “and”. The result of that replacement was that grant-in-aid would now only be applicable to the disability grant. It used to be applicable to older persons who required regular attendance by another person.
The Black Sash believed that this was unconstitutional and that it was an area that needed to be focused on.
Mr V Magagula (ANC) wanted to know why there was a problem with the fact that the Easter Holiday fell in the period within which civil society had to make written submissions to the Committee. He could not understand why the Black Sash felt that the newspapers in which the advertisements appeared did not reach the affected communities. He could not understand what the point was that the Black Sash was trying to make. He asked exactly what it was that the Black Sash wanted.
Ms Beukman replied that what the Black Sash really wanted to see in the Bill was a choice for the chronically ill to be provided with a chronic illness grant, based on the reasons in the submission that the Black Sash presented.
By mentioning it in the submission the Black Sash wanted to place on record that the voucher system had been formally discussed and found to be an undignified way to assist people. The Black Sash wanted the discussion to continue.
Furthermore the Black Sash appealed to the Committee to not let the Bill go through Parliament without considering this particular submission seriously and in depth. The Black Sash wanted a consultative engagement with the Committee. More public participation was needed and the organisation recommended that the Bill be deferred until all this had happened. The Black Sash understood that the Bill dealt with disability and not with chronic illness, but it had severe implications for the chronically ill. This was why this submission and others dealt with chronic illness.
Ms T Kenye (ANC) asked if the Black Sash did not want the chronically ill to receive food parcels or vouchers. What did it suggest the people had to survive on in the interim? There would not necessarily be funds for a chronic illness grant immediately.
Ms M Mafolo (ANC) said that she identified chronic illness as the most important focus of the presentation. People with chronic disease collected their medicine from the Department of Health (DoH) clinics and they received grants from the DSD. She said that some chronically ill recipients of the grants concentrated on the grants and neglected to take their medicine, causing their health to deteriorate. She said that some people abused their grants. That was why she suggested that the DSD engaged the DoH. The doctors that saw these chronically ill patients had to verify whether these patients were in fact taking their medicine, so that the DSD did not pay grants to people who did not take their medicine.
Ms N Gcume (COPE) said that the Black Sash had confused the issues. If somebody was chronically ill, the person was not disabled. She had been a diabetic for ten years, but she was not disabled. She wanted to highlight the difference between disability and chronic illness. She said that the recommendations that the Black Sash had made were good, but it needed some in-depth discussion.
Ms H Malgas (ANC) said that the BST submission was about chronic disease, because the there was nothing about chronic disease in the Bill. The DoH would be engaged to take cognisance of the fact that the chronically ill became functionally disabled when they did not manage their diseases. The Members would make their inputs when the PC discussed the submissions.
The Chairperson said that she understood that the Black Sash proposed an insertion on chronic illness into the Bill.
Ms P Tshwete (ANC) agreed that the Black Sash had appealed for chronic illnesses in to be included in the Bill. When the Committee had discussed the Bill before, it had difficulties with the term “chronic”. Some chronic illnesses were caused by mismanagement of taking drugs. She had a child who was diagnosed with bi-polar disorder. The child was not disabled and the disease was manageable. However, sometimes when chronically ill patients went to the clinic, their medication was not in stock. This caused these patients to become ill.
The Department of Health (DoH) also had to be involved in defining “chronic”. The DoH did not always supply people with the medication they needed. The cluster of Social Development, Health, Ministry for Women, Children and People with Disabilities, and Office on the Status of Women (OSW) had to sit. More women than men had HIV, thus in the group of people described as chronically ill, there would be more women than men. The term and concept of “chronic” needed a lengthy discussion between the Departments of Social Development and Health.
Ms Beukman said that she had never thought about the word chronic as described by the Ms Tshwete. The Black Sash took the World Health organization’s definition of “chronic illness” and used that as a measure to take the debate forward. What Ms Tshwete explained was that a person would be chronically ill, take the treatment and become healthy, and then was not chronic anymore. This was not the understanding of the Black Sash. The Black Sash’s understanding was that a person had a chronic illness. With treatment and the correct diet, the person maintained and managed the chronic illness so that the person remained a healthy, productive citizen. That was what the Black Sash wanted them to be.
The Chairperson said that Parliament had published an erratum in the newspaper on the extension of the closing date for submissions. It was Parliament’s policy to advertise in the newspapers. She said that the Black Sash had been present when she had explained this to the Committee. She said that the Committee took a dim view of the fact that the Black Sash still included it in its presentation, but accepted the right of civil society to criticise the organs of Parliament.
The Chairperson found the argument for a chronic illness grant interesting. She asked whether the Black Sash had done a cost analysis of the proposed grant. On page 5, point 3.2 of the submission, the phrase “within its available resources” was very important. Parliamentarians voted on different votes to allocate specified amounts of money for the different functions, and expected Departments to spend within the allocated amounts. Government was a highly regulated environment and Committees were very tough on departments that overspent. There was the Public Finance Management Act (PFMA) and monitoring bodies to make sure those departments stuck to budgets. She agreed with the Black Sash that social assistance was Government’s biggest poverty alleviation tool. She also agreed that grants alleviated poverty within a household. However, one had to keep track with the resources that Government had available. That was why she was interested in a cost analysis.
Ms Beukman replied that civil society had an idea of where the money could come from to provide the chronically ill with a grant. The saving that was incurred in the disability grants budget when all the chronically ill did not get it anymore, could be channelled towards the chronic illness grant. The Black Sash looked beyond the figures. There was a significant financial and social cost saving when people were prevented from becoming functionally disabled, and had to rely on a disability grant again. Without the grant, the life expectancy of a chronically ill person decreased significantly, and the gravity of this implication had to be considered in the light of the large numbers of children already orphaned, that the state had to support. The thinking should not only be about the immediate cost, but also about the impact that it would have on society later on.
There was a basic income grant proposal by civil society a few years ago. Government told civil society to go back and work out the details. It was costed by economists and lots of effort went into researching it. Those proposals were never taken up by Government.
Out of that process civil society had learnt that it was not its role to cost such an intervention. Civil society had the role of focusing the attention of Government on the human rights impact that a particular legislative decision would have on society and subsequently negotiate a decision that would have a less severe impact. She implored the Committee not to proceed with the Bill until wider consultation with other organs of civil society and more in-depth discussion had taken place about its implications. She reiterated that the Black Sash wanted to be part of the process.
The Chairperson asked for clarity on the insertion that the Black Sash was proposing. She asked why Black Sash was proposing an insertion in Section 9 and not an amendment to Section 1 of the Act. She asked whether Black Sash proposed in terms of the definition that it should also be inserted in Section 1.
Ms Beukman said that Section Nine in the Act dealt with all the different grants. The insert would be put in Section One and again in Section Nine.
Mr Nyembezi said that the comments about the time constraints, the timing of the advertisements, the media used and the public holidays that fell between the advertisements and the submissions, were intended as feedback to the Committee to make Members aware of how it was experienced from the side of organizations that wanted to make submissions. It was done with the aim of improving communication in the future. If the Committee could take these factors into account in future, it would allow for wider participation which would have the effect of broadening democracy. The Black Sash was aware that it was a well intentioned process.
He wanted to explain how Black Sash experienced the interaction between disability and chronic illness. What was happening currently was that people were chronically ill. Their condition worsened and they became unable to support themselves. They were assessed and they started receiving the disability grant. Over time and with treatment their condition improved, but they still needed assistance. If they improved to the extent that they could work fulltime again and it was reported to Social Welfare, they ran the risk of losing their grant while their health was still fragile, although better. This became an incentive to not take optimum care of themselves, and thus remain sickly in order to retain the grant. If there was no threat of losing the grant, the person would probably recover as best he or she could and work fulltime again.
A Member mentioned the problem of people not using the grant for the purpose for which it was intended. Government stated its intention to organize itself as a developmental state and to look after the rights of the poor and the vulnerable. The Constitution bound the Government to take progressive steps to realize their rights. From the progressive point of view of a developmental state, anybody in need should qualify for social assistance. The means test was there to determine the degree of need. The importance of the grant as a poverty alleviating tool far outweighed the few cases in which people allegedly abused their grants. When the state gave grants, it should not be paternalistic in its approach to recipients, to the extent that it wanted to dictate to them how to behave. The grant needed to be seen as a means to improve the dignity of its recipients, and something that would assist the recipients to graduate from poverty, so that in the long term they would no longer require state assistance in the form of grants.
The Black Sash stated its support for the Committee. It made itself available to assist the Committee in motivating for more resources, if needed. It was aware of the impact the economic recession had on the poor communities. Many breadwinners in these communities lost their jobs and many households lived on social grants. If the grants fell away, it would plunge many households in a crisis. The intention of the submission was to widen the social net, so that those in need of social assistance were provided with it.
Concerning the modalities of how social assistance would be delivered to the people in need, the Committee was in solidarity with the Committee in achieving it. The Black Sash asked how, for example, ESKOM received a bail-out when it was in crisis. There was a need to promote culture solidarity so that those who had were in solidarity with those who did not have and did not have a voice to make their needs known. For ongoing interaction, the Black Sash wanted to lay on the table, in a friendly manner, the issues that it was concerned about.
The Chairperson asked whether the Black Sash saw the chronic illness grant as temporary.
Ms Beukman replied that the Black Sash did not see it as a temporary grant, because people needed it to maintain a healthy lifestyle. A chronic illness was a permanent condition that the sufferer had to manage in order to stay healthy.
Ms Tshwete said that she understood what the Black Sash meant by saying that the Bill dealt with disability and not chronic disease. She understood that a chronic medical condition was for life. If people took their medication, they did not become disabled. The fact that people sometimes did not get the medication that they needed from the clinics had to be looked at. The DoH and its management needed to be engaged to make sure that the chronically ill received the medication that they needed to stay healthy, from the clinics. She agreed that the Bill needed deeper discussion with more stakeholders. She said that if she said something different earlier, it was a mistake.
Ms Kenye said that chronic illness did not mean disability. Even disabled people were turned down for grants, because in some cases they were fit to work, for example people who had lost an eye or an arm. Disability also needed a wider description. All disabled and chronically ill people in the country could add up to 50% of the population. The financial burden it would place on the state was enormous. Could the Government afford it? Those who were chronically ill and healthy as well as those who were disabled, but able to work, had to support themselves.
The National Association of People Living with HIV/AIDS (NAPWA)
The National Association of People Living with HIV/AIDS lobbied on behalf of its constituents, people living with human immunodeficiency virus and acquired immune deficiency syndrome. The Association endorsed the Black Sash’s submission and reiterated the call for a chronic illness grant.
The National Association of People Living with HIV/AIDS (NAPWA) submission
Mr Nkululeko Nxesi, Secretary General of NAPWA, said that NAPWA had always advocated for a holistic response in caring for people living with HIV and AIDS. In 1998 NAPWA had realised that people were dying due to the lack of live saving drugs, hence it formed a national coalition to fight for access to treatment. NAPWA then realized that many people who were to receive or were receiving treatment did not have food. Therefore many people living with HIV and AIDS started dropping out of the system because of lack of food.
Many people died not because of HIV and AIDS but because of lack of food and other basic needs and services. It was clear that HIV was harsh and brutal to people who were socially and economically distressed and depressed. NAPWA then approached the Department of Social Development, Department of Health and the Presidency of the Republic of South Africa requesting the Government to provide social grants for unemployed and poverty stricken people living with HIV and AIDS.
Around 2001-2002 Social Development responded to NAPWA’s call by providing social grants to people living with HIV and AIDS using different means. This is after NAPWA had embarked on a number of campaigns which included marches, demonstrations, fasting/hunger strikes, black Easter and black Christmas events. Social grants provided a major relief to those in impoverished situations. NAPWA listed the current challenges with issues of social grants to people living with HIV and AIDS, and the negative implications of Government stopping social grants to people living with HIV and AIDS.
NAPWA therefore requested the Department of Social Development to stop deregistering all unemployed and poverty stricken people living with HIV and AIDS on social grants; immediate and urgent re-registration of all deserving people living with HIV and AIDS on social grant; standardization of the Social Grant system when it applies to people living with HIV and AIDS in South Africa; stop using of CD4 count as a measure and criteria for people living with HIV and AIDS to access social grants but rather use socio-economic status as the main criteria for eligibility; and creation of Co-operatives for people living with HIV and AIDS and unemployed people nationally.
In all meetings with Government NADWA had stressed the point that people living with HIV and AIDS were not lazy, were willing to work and understood that social grants were a temporary measure. NAPWA was not advocating for dependency. However, whilst there were no jobs or income, social grants became a huge, important and positive relief. NAPWA therefore advocated for a social assistance entry and exit system. People living with HIV and AIDS would be enrolled on the social grant system, put on a skills development programme for a fixed period of time, financed and helped to start co-operatives and small businesses. Once a person living with HIV and AIDS had started the business activity she or he would be taken out of the Social security net system.
NAPWA supported the chronic illness grant. However, it submitted that any intervention should ensure that the amount was not less than R1 000 per month. The money was not only for food but also for expenses incurred in going to collect treatment, for medical check up, paying of electricity and other basic services.
NAPWA argued that social grants provided a huge life line to many people who were unemployed and poverty stricken. It was also recently reported that social grants contributed to economic development as the system allowed people to buy goods
The Department of Social Development and Government must know that our people, poor Black people in particular, were are dying in numbers due to a weakened immune system caused by poverty and hunger.
Government must know any treatment, particularly for chronic illnesses, worked better with food.
(See attached document)
Ms Gcume said that Members were part of communities and were familiar with the challenges in those communities. The Committee recognised what NAPWA had said, but clarity was needed on some of the details. She said that although NAPWA had said that people were not infecting themselves, she knew it to be true in the area that she came from. She alleged that people were selling their infected blood to doctors and the doctors were using it to make other people appear infected and then eligible for a grant. There was a need for different Government departments to come together and assist chronically ill people to generate incomes for themselves, so that people do not only think in terms of grants for subsistence. There must be cooperatives for all poor people to generate an income for themselves. She said that what was interesting was that the NAPWA also had recommendations.
Ms Kenye agreed with Ms Gcume. Other Government departments, including Labour should be engaged, because the Committee was saying that these people were supposed to work. Regarding teenage pregnancies and the collapse of support groups, she said that it was everybody’s responsibility to monitor these phenomena on the ground, including NAPWA’s. Policies may be in place, but what was more important was what was happening at grassroots level. The Members of the Committee were from those communities, but deployed to Parliament for the betterment of the people in those communities. The Members were concerned about Human Rights. Chronic illnesses also had to be categorized in terms of stage and to what extent it affected the individual.
Ms Kopane (DA) said to the Black Sash and other organisations that the intention of the amendment to the Bill was to minimize the number of fraudulent grant recipients. Many recipients of these grants went to the doctors and clinics, but never took their medication. The people had rights, but also had responsibilities. The DSD could not support people who were irresponsible about their lives. There was a need for the Social cluster to meet to discuss how to address the problem. A colleague had talked about monitoring. Social workers had to make sure that the grants were reaching the right people. If needs be there should be a program similar to the Directly Observed Treatment (DOTS) program for TB patients, where community workers would make sure that HIV/AIDS patients took their antiretroviral (ARV) medication on a daily basis. She recognized that medication had to be taken with food, but the DSD could not promote corruption.
Ms Tswete said that intention of public hearing was to hear the concerns of the people. She said that the concerns of NAPWA had led the Committee to see that it should engage other committees and departments like the Departments of Labour and Justice as well as inter- ministerial committees. She said that the issue of chronic diseases was a complex one because there was a list of 14 chronic diseases. It was possible that the process would reach a stage where each of those conditions and its implications for the sufferer would be discussed. The Ministry of Health had a very important role to play in this process. On page three, challenge number three accused medical doctors of favouritism and soliciting bribes, before declaring people eligible for grants. These were issues that the DoH should follow up. There would be no immediate yes or no answers, but the concerns needed to be listed for thorough discussion.
Ms Mafolo said that if Members were not infected, they were affected. NAPWA said that it supported the chronic illnesses grant. She asked what about the opportunistic diseases that caused people to be highly infected.
Mr Nxesi replied that there was an issue about opportunistic diseases. Government talked about a comprehensive treatment and care strategy which was not only about ARVs. It was also played about treating opportunistic infections. NAPWA supported that program, because it delayed the need for taking ARVs. Nutrition also played a major role in this program, and social grants would facilitate the availability of nutrition. With the combination of basic treatment and nutrition, some people would not need the stronger ARV medications.
Ms Mafolo said that according to NAPWA’s presentation, the organization encouraged discrimination. The Government’s stance was that nobody should be discriminated against, because they were HIV positive.
Mr Nxesi responded that NAPWA was at the meeting as an organisation representing people living with HIV and AIDS and was not apologetic about it. NAPWA was part of a broader coalition mobilizing for the campaign for a chronic illness grant. The entry point would be people living with HIV as NAPWA had a mandate from them.
Ms Mafolo said that the submission stated that the grant should not be less than R1 000 per month, because it was also for transport. What about what the Minister of Health had said when talking about the budget, about health services being brought closer to the people? The Government was saying that no-one should go without water, sanitation and electricity.
Mr Nxesi replied that NAPWA acknowledged the plans of Government to improve on healthcare delivery and to bring it closer to the people, but those were long term plans. The people were in need of assistance immediately and in the short term.
Ms Mafolo said that NAPWA was funded, but that there were cases where money was being mismanaged by NAPWA branches. She referred to page five (in the middle of the page) where NAPWA said that doctors should not assess people for grants. If the doctors do not asses people how would anybody know whether a person was HIV positive or negative?
Mr Nxesi replied that NAPWA was funded by the Department of Health and the Department of Social Development. The funding was for provinces to form support groups.
Ms Mafolo quoted the report saying”the grants encourage teenage pregnancies”. She said that it was not true and would never be true. The Minister herself denied that it was the case, because she said that teenage pregnancies happened long before a grant existed. R200 was just to assist, not to fully support the child.
Mr Nxesi replied by saying that. NAPWA did not say that teenagers fell pregnant in order to get a grant. NAPWA said that it was alleged that teenagers fell pregnant to get a child support grant. NAPWA agreed with the position of the Minister of Social Development that teenage pregnancy had nothing to do with getting grants. If that was happening, how would one counteract that?
The Chairperson said that NAPWA and SASSA would surely rather lobby the Committee than confront it.
She also asked for clarity. She said that SASSA was the implementing agent for the payment of grants and not a department of the DSD.
Mr Nxesi said that he was glad that there were SASSA officials present, for they would know that two to three years previously, NAPWA have been engaging with them. NAPWA embarked on the Black Christmas and Black Easter campaigns to fight for social grants. SASSA had told NAPWA that it was the implementing arm, not the policy making body. NAPWA was currently engaging with the policy making body, the DSD.
Ms Gcume said that the aim of the public hearing was to hear whether people understood and accepted the Bill and where the matters of concern were.
The Chairperson said that the focus of the submission of NAPWA was to motivate for a chronic illness grant. She asked what NAPWA thought about the Amendment Bill on the table. Did it agree with the definition of disability? Did NAPWA have any objections to the appeals process? Did it have positions on other related parts of the amendment?
Mr Nxesi replied NAPWA endorsed the submission by the Black Sash and supported the Bill if it included the additions and changes that the Black Sash proposed. He said that NAPWA has been waiting for this opportunity for six years. NAPWA had started the campaign for a social grant as early as 2002. NAPWA understood that the chronic illness grant was not only for the PLHIV; it was for everybody who qualified, but he asked that the Committee respect the fact that the constituency of NAPWA was the PLHIV. NAPWA knew that the Black Sash would be at the hearing and that it would have provided the broader technical framework within which to motivate for the chronic illness grant.
The Chairperson said that the aspect of the presentation, on which some speakers before her had touched upon, was the issue of administrative justice versus personal responsibility. Her concern was shared by Members.
The Chairperson said that, according to Government’s new strategy for HIV and AIDS, anybody with a CD4 count of 400 and less, automatically had access to ARVs. What was NAPWA’s response to that?
Mr Nxesi replied that NAPWA supported the fact that people would get ARVs when the CD4 count hit 350. NAPWA was part of the South African National AIDS Council (SANAC). NAPWA supported the availability of treatment at an earlier stage in the illness. NAPWA called on the DSD to supply PLHIV with a chronic illness grant concurrently with being supplied with ARVs, in order to be able to buy food. ARVs without food were dangerous. NAPWA was not saying that the ARV programme of Government was unnecessary. NAPWA, together with other organizations, had fought for it. What NAPWA was saying was that ARVs without food was counterproductive.
Ms Tshwete wanted clarity on NAPWA’s allegation that Government’s ARV treatment was not sustainable because most PLHIV did not take the medicines that they received. In her understanding it was exactly what the Committee was saying about the relationship between chronic illness and disability. People did not use their medication and became disabled. She said that it was fraudulent if a person received ARVs and did not use them.
Ms Gcume referred to the NAPWA’s allegation that some PLHIV were subjected to corrupt doctors who were selling medical reports for grants. She said that it was important for the Committee to get this information so that when the Committee did oversight visits, Members could confirm whether these things were happening. There were matters of concern.
Ms Gcume said that all departments had HIV&AIDS budgets. What were they doing with their budgets to assist NAPWA to create jobs for those who could work? The support groups were just talking which was not helping. They had to implement plans and strategies to rescue the people. She used a young woman in her constituency as an example. She was one of the first people in the area who disclosed her HIV positive status. She was participating in the programmes, was working and healthy. All people, even those in the deep rural areas, could live like that. It was part of NAPWA’s brief, in her view, to educate people about how to maintain their quality of life, irrespective of where they lived.
Mr Nxesi appreciated Members’ comments. Around 2005, the Office of the President set up a task team composed by members of the social cluster. Social Development chaired the Social Cluster. It requested to meet NAPWA to set up a comprehensive strategy to fight poverty and unemployment amongst people living with HIV. Each department was given clear tasks. Social Development had to provide social grants while participants were undergoing skills training by the Department of Labour, while the Department of Agriculture had to provide land for agricultural projects. NAPWA was in the possession of a document that reflected this. NAPWA provided the Government with a plan. NAPWA said that social grants were not a permanent issue, because PLHIV were not disabled. Social grants took away people’s dignity, but people took it, because of a lack of options. The problem with Government was that the different units in a department did not communicate. Things were always in the pipeline. He wanted to know how long this pipeline was. NAPWA would be happy if the Committee could bring all these Government departments together in order to resume the plan and to hopefully bring it to fruition.
NAPWA denied that people infected themselves on purpose with HIV to get grants.
AIDS Law Project submission
Ms Umunyana Rugege, Attorney, AIDS Law Project (ALP), and Mr Jonathan Berger, Senior Researcher, AIDS Law Project, presented the Project’s submission.
Ms Rugege said that as there had been extensive discussion of chronic illness during the preceding submissions, she would focus on the second point of the ALP’s submission that dealt with the appeal process.
ALP emphasised that it was not the position of the ALP that all people living with HIV and AIDS were by definition disabled. It was also not the position of ALP that all people living with chronic illnesses such as HIV and AIDS should automatically receive the disability grant.
Firstly, ALP wanted Parliament to provide clarity on the definition of disability, which, according to ALP, was unclear in the Bill.
Secondly, ALP sought to simplify the appeal process by rejecting the amendment as it was set out in the Bill
Thirdly, ALP wanted o introduce timeframes in the present appeal process that would allow for speedy consideration of appeals in respect of disability grant applications.
The Bill did not provide clarity on the issue of who was eligible for a disability grant because the definition was quite broad. The definition proposed in the Bill did not take the definition much further than as at present in the Act.
There was confusion, both at the level of the administrators who had to consider applications for grants and at the level of health practitioners who had to assess whether a patient should be considered disabled in terms of the Social Assistance Act.
Ms Mafolo noted that Ms Rugege had shortened the presentation and that she, Ms Mafolo, did not know on which page M Rugege was.
The Chairperson asked Ms Rugege to explain on which page she was.
Ms Rugege replied that she was on page 5. She discussed the vagueness and uncertainty that arose out of the Bill’s definition of disability. ALP’s concern related to the lack of clarity. If a person could not, from the regulations or from the legislation, determine what should be done, that state of vagueness resulted in an unconstitutional state. ALP referred specifically to the Constitutional Court case of Dawood and Another v Minister of Home Affairs and Others, which dealt with this issue extensively.
Ms Rugege discussed briefly, the National Strategic Plan (NSP) on HIV and AIDS and Sexually Transmitted Infections (2007-2011) Stated that people with disabilities were a particularly vulnerable group and some suffered a double stigma arising from discrimination as a result of their disability and HIV status. The stigma presented itself in their communities, in the work environment and in their interactions with the state. If it was clear who was eligible and who was not eligible for these grants and if these vulnerable people could get access to the grants, they could build themselves up, in a dignified manner, to a stage where they could re-enter the job market and they would not need a grant anymore. This would leave space for other people to be assisted. In this manner there would not be a continuously growing number of grant recipients.
Ms Rugege wanted to point out that the South African national AIDS Council (SANAC) in chapter 12 of the NSP recommended a chronic illness grant for the reasons she just outlined and for the reasons that had been discussed already. The NSP did not only require a chronic illness grant, but also the effective implementation of such a grant. This fitted into the larger role that SANAC played in the country, and that was to reduce the number of people in the country, living with AIDS, and to reduce the burden on the economy. The second point on ALP’s agenda started on page seven and dealt with the appeal procedure. (See attached document)
Ms Tshwete said that most submissions recommended the inclusion of chronic illness in the Bill. As said before, all the other related departments would have to respond to it, as it seemed to be a serious matter. The Ministerial Committee would have to look at it as well as the inter-governmental committees.
The Chairperson asked what a reasonable period would be for decisions on appeals.
Ms Rugege said that ALP considered some of the case law to determine what would be a reasonable period. ALP had listed four factors. These factors came from a Supreme Court of Appeal Case dealing with social grants and particular time periods. In this case the Supreme Court of Appeal recommended three months. ALP aligned itself with the decision of the judge in this case and thought that 90 days was a reasonable period.
Mr Berger said that he would like to address some of the other questions and comments that were made.
He supported the intention of the Committee to bring other departments and committees into this discussion, particularly around the issue of a chronic disease grant. What ALP brought to the discussion was to look at the definition of disability and to say that different administrators could come to different conclusions. The level of discretion left to administrators was disconcerting. It would result in unequal application of the law and it would result in some ineligible people getting grants and some eligible people not receiving them. This was at the root of the high number of appeals and the resulting backlog. It was ALP’s interpretation that the Social Assistance Amendment Bill did not address this vagueness. Refining the definition of disability to the extent that it left very little room for an administrator to apply discretion and streamlining the appeal process would address much of the current problems around the Act.
Ms Rugege spoke about the development of the National Strategic Plan on HIV and AIDS and [sexually transmitted infections] STIs that took place at the end of 2006 and early 2007.Firstly, that was a process embarked on under the auspices of SANAC, which included, at the plenary level the Inter-ministerial Committee on AIDS. Many of the government departments mentioned here were part of SANAC and were part of that discussion. In early May that plan was adopted by Cabinet, so it was not a SANAC plan, it was a Cabinet-approved plan. In terms of this plan, the comprehensive response to HIV was implemented by Government departments and by civil society sectors across the board. The fact that Cabinet endorsed a plan that addressed the need for a chronic disease grant was important. Secondly, the reference to the chronic disease grant was made in chapter 12 of the National Strategic Plan (NSP). Chapter 12 was a very interesting chapter of the NSP that dealt with effective implementation of the plan. Essentially, what that chapter said in relation to a chronic disease grant was, and this echoed what the Black Sash as well as NAPWA had said, that a chronic disease grant was important for South Africa as a country to tackle HIV and TB, and that it was an integral part of a comprehensive response to dealing with HIV and AIDS.
The Chairperson thanked the ALP for its submission.
Mr Puseletso Loselo, Chief Director, Legal Services, DSD asked whether the ALP had a suggested definition for disability.
Mr Berger said that it could be provided.
The meeting was adjourned
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