The Treatment Action Campaign, the South African Council of Churches, and the Disability Action Research Team with Disabled People South Africa made oral submissions to the Committee on the Social Assistance Amendment Bill [B5-2010].
The Treatment Action Campaign endorsed the earlier submission by the Black Sash Trust and reiterated the latter’s call for a chronic illness grant. The Campaign‘s main concern was those who were unemployed and unemployable, and who were living with human immunodeficiency virus and acquired immune deficiency syndrome. These people were breadwinners and would not be able to support themselves and their families if they lost their grants.
The South African Council of Churches represented 26 Christian denominations and 15-16 million people, of which a huge portion was poor, vulnerable and marginalized. The Council supported calls to drop the means test, which caused indignity and dishonesty, in favour of a needs test by an integrated panel, able to assess the needs of the applicant to enable him or her to function as effectively within the community as possible. The Council supported the recommendations of the Consolidated Report of the Committee of Inquiry into a Comprehensive Social Security System for South Africa (also known as the Taylor Committee), which was released by the Minister of Social Development on 2 May 2002. The Taylor Committee Report’s recommendations, currently motivated by the Black Sash, were that the disability grant should be allowed to cover people suffering from HIV/AIDS, with a CD count below 200 as well as people suffering from chronic illnesses. The Council asked why, in the second decade of democracy, there was still a lack of implementation and recognition of the basic income grant and the integrated developmental strategy. The Council did not expect an immediate answer. The Government had agreed in principle to the basic income grant.
The Disability Action Research Team jointly with Disabled People South Africa proposed that that the word “disability” in the definition of the term disability in Clause 1 of the Bill should be replaced by the word “impairment”, for the reason that one could not use a word to define the same word. It was submitted that the term “disability” represented the complex interaction between persons with impairments and the environment. That disability was a product of disabling environments and not a quality inherent in a person, suggested that use of this term was not appropriate. With reference to Section 7 of the principal Act, the removal of the terms “physical or mental” in the Amendment Bill was seen to be extremely positive, as there had long been exclusion of children with particular impairments, such as children with hearing (sensory) loss, from access to social assistance. Again, with reference to Section 9 of the principal Act, the removal of the terms “physical or mental” in the relevant clause of the Amendment Bill was welcomed, so that people with a range of impairment types could be considered for social assistance.
Members debated the choice of terms to describe disability. An African National Congress Member said that “impairment” would cause confusion, since it was used in other contexts. The Department advised that the term “disability” would remain, but “impairment” would be in the body of the definition. A Democratic Alliance Member quoted the World Health Organisation’s definition of “disability”.
The Chairperson welcomed Members, delegates, and social work students from the University of Cape Town who were visiting Parliament as part of their course work and attending the meeting as observers.
Treatment Action Campaign. Oral submission
Mr Michael Hamnca, Social Security Officer, the Treatment Action Campaign (TAC), endorsed the Black Sash’s submission made by the Black Sash Trust. If the Social Assistance Amendment Bill was passed as it was formulated at this stage, there would be no social assistance for the chronically ill, sufferers of ordinary, multi drug resistant (MDR) or extreme drug resistant (XDR) tuberculosis (TB), HIV and AIDS, diabetes or high blood pressure. There was a great need for a grant supporting these categories of people in society with a chronic illness grant. Doctors were conducting assessments that showed the importance of this grant. In some cases family members rejected these people, in which case they had to build their own houses. That was why they needed the grant in cash.
Ms M Mafolo (ANC) agreed with TAC that people who were unable to work had to receive grants. The previous day submissions were from the Black Sash, NAPWA and The Aids Law Project and had been informative. The Committee accepted the views of civil society, but said again that if a person was chronically ill, he was not necessarily disabled. His illness could be managed. He should not be denied the right to work.
Ms H Lamoela (DA) agreed that there were people suffering from TB and diabetes, but TB was curable and diabetes was manageable. Government and civil society had to educate the public to make healthy lifestyle choices. Some people suffered from these diseases in many cases as a result of their lifestyle choices. Indigent people could partake in the indigent policies of municipalities. These people did not build their houses on their own. They were put onto a waiting list or they applied for subsidies from the state to build their own houses. In some cases they got preference to get housing accommodation, because they were in such dire need. She therefore differed from Mr Hamnca on his statement that they had to build their own houses. It seemed to her that they were unaware that they could partake in the NDA (National Development Agency) projects in their areas. They could earn extra money by inserting their skills into these projects.
Ms T Kenye (ANC) had a problem with the statements of TAC. Chronic illness was a broad subject. She understood that he was speaking on behalf of People Living with HIV and AIDS (PLHIV & AIDS). She acknowledged that all present were concerned about the wellness of the people of South Africa. She understood TAC to say that these PLHIV & AIDS would be dependent on grants. In her opinion this would be counterproductive. The Department of Health (DoH) ran a campaign of voluntary testing with the aim of destigmatising the disease. An argument for a separate grant for PLHIV & AIDS would add to the stigma. The onus rested on the patient to look after him- or herself.
Ms Mafola asked TAC whether it was encouraging people to do other things for themselves apart from getting grants.
Ms N Gcume (COPE) told TAC that in the country as a whole many people suffered from mental and emotional disorders and had disabling and chronic diseases. Chronic disease was manageable but not curable. When a person had a stroke, that person became disabled. The person automatically qualified for a disability grant. The Department of Social Development (DSD) could and would do things for people to help them manage their lifestyle. The Bill defined and addressed disability specifically. The DSD did not want the country to be dependent on grants. It put people in a mindset where they did not work and plan for a better future for their children. The Bill was for disabled people. The Bill was for people whose chronic illness disabled them. People manipulated laws. All departments had a budget for HIV and AIDS projects. The Government had to help people to open co-operatives, and monitor their progress, because there was space for corruption. HIV and AIDS was everybody’s business.
Ms W Nelson (ANC) wanted clarity on whether TAC was saying that everybody who had a chronic disease was eligible for a disability grant or only people who had been incapacitated by their chronic illness.
Ms Tshwete said that she was covered by Ms Nelson. Members tried to explain what was meant by “chronic”. For the sake of those who did not understand the Bill, it tried to stop people from fraudulently getting access. Chronically ill people, who could not work, would get a disability grant. NAPWA, during their submission, had alleged that doctors solicited bribes. This implied that people were forging cases to get grants. When a person was told that they were MDR, it did not mean that the person was disabled. Chronically ill people would qualify for a grant when they became disabled due to their chronic illness.
The Chairperson said that TAC was proposing grants for people with chronic disease. On what figures and research had TAC based its call for the chronic illness grant? Did TAC have confidence that that people with chronic illness could access Social Relief of Distress (SRD)? Did TAC think that the system could be improved to make food banks and parcels, and participation in food garden projects and provisioning linked to sustainable livelihoods more accessible to members of society who needed it?
The Chairperson asked TAC if its members were currently accessing SRD. According to Government’s new AIDS policy, when a person’s CD4 Count went below 400 in the Western Cape and 350 nationally, the person qualified for ARVs.
Mr Hamnca explaining the situation around MDR and XDR TB. Treatment time for ordinary TB was six months, for MDR TB it was 18 months and for XDR TB, 24 months. When they wanted to return to work, they were chased away. TAC was assisting many people by helping them to lodge complaints at the Department of Labour. There was a scarcity of jobs and when they had chronic illness they became unemployable. When they applied for a job, they were tested for diseases and if they tested positive, they did not get the job. There was a case pending against municipal officials in Khayelitsha. Some workers had an opportunity to go to Israel. Their supervisor started telling everybody that they could not go, because they had were HIV positive. The supervisor did not respect them and did not uphold confidentiality.
Mr Hamnca said that, pertaining to food gardens, land availability was a problem. Unemployable people started setting up stalls and planting food gardens. The Metro Police of the City of Cape Town had destroyed the gardens, saying that the land was used without permission
Mr Hamnca said that he could mention 5 000 members of TAC who received disability grants and who were unemployable. They could not get work. Once the grant fell away, all these families would be destitute.
Mr Hamnca said that to adhere to treatment, HIV sufferers had to eat. Patients often defaulted, because of a lack of food. They defaulted to get a grant. When they applied for SRD they were told that they had to qualify for a grant in order to get it.
Mr Hamnca said that the SRD was a voucher. If the person needed transport money or money to buy electricity, it would not help him.
Mr Hamnca said that people who did not work tried to create micro businesses for themselves. The Law Enforcement Police Officers destroyed everything.
Mr Hamnca said that the means test was a problem for the people. Doctors told people that there was no HIV grant. There should be a tool to assist people to access the chronic illness grant.
Ms Tshwete said that the Bill was becoming easier for her. Civil society was raising issues of discrimination in the workplace which was an issue for the Department of Labour (DoL).The DoL had to visit factories or call people to Parliament to educate them. The need for job creation was an issue of Labour. This highlighted the need for the departments in the social cluster to get together. The presenters had to remember that they were speaking for the whole of South Africa. There were functioning food gardens in Limpopo and the Eastern Cape and elsewhere. He could not talk about one city, in this case Cape Town. The availability of land was an issue for the City of Cape Town. It had nothing to do with the Bill. She had firsthand experience of the problems that TAC was raising, because her brother, a teacher, died of MDR, after being unemployed for six months. She said that confidentiality was a problem in the clinics as well. She said that there were processes that Government was addressing to assist in these circumstances.
Ms S Kopane (DA) asked whether Mr Hamnca implied that he could not create a food garden in his own backyard. The City of Cape Town was part of South Africa and in line with the constitution of the country. When a person wanted to use a piece of land for any purpose that person had to apply to the municipality for permission to use the land. She asked for clarity on the issue of the use of the land. Had he applied correctly? Had the municipality ignored the applications? The DSD was not only about handing out grants The task of the DSD was also to help people with creating self reliance and empowerment. That was why the National Development Agency existed. It was not sustainable to address social needs with grants only. The system was failing in the first world for the reason that it was not sustainable. Government needed to create more jobs so that people could be independent and look after themselves. It was not only the challenge of Social Development alone; it needed the input and commitment from all other departments in the social cluster. The country could not promote dependency. The country had to promote self reliance.
Ms Gcume did not see a response of TAC to the question food parcels and SDR. She asked what role TAC played as far as their members were concerned to improve the financial situation of their members, apart from grants. What did TAC do to assist its members? The doctors were right; there was no grant for AIDS. There was only a disability grant. The means test, together with a physical assessment of the person, would decide if the person qualified to get it. What did TAC say about the Bill? The Black Sash had explicitly asked for a chronic illness grant.
Ms Nelson repeated her question whether TAC said that all people suffering from chronic illness should get a grant or only when it became debilitating.
Ms Kenye was surprised when TAC said that patients were defaulting because they did not have food. The practice of defaulting created favourable conditions for diseases to become drug resistant. Was TAC promoting the conditions that caused drug resistance? She said that there were nine provinces under the South African constitution. The RSA was not a federal state. There were licenses to use land and facilities. All people were governed by the same laws. Monitoring had to happen everywhere and it was everybody’s duty. Confidentiality still stood in HIV and AIDS. There had to be disclosure, but that was the prerogative of the person him- or herself. Nobody had the right to disclose another person’s HIV status to a third person. She said that Members of Parliament were part of Communities and concerned about those community as well as human rights. If 50% of the population had chronic illnesses, could the country afford to put everybody on a chronic illness grant? Parliamentarians were not immune to these diseases and many were HIV positive and suffering from chronic diseases. The social cluster in Parliament contained the Department of Agriculture and Land reform as well as the DoH. People should be encouraged to take care of their own lives, by taking their medication and not defaulting. Testing for HIV and AIDS was voluntary. A consent form had to be signed by the person being tested. Unemployment was a problem that the Government was trying to address by struggling to create more jobs.
Mr Hamnca said that when chronically ill people worked, there was no problem. The problem arose when chronically ill people were unemployed. The question was how to assist people to get jobs. The means test was applied and not every person passed it. If a person was chronically ill and unemployed (and unemployable) failed the means test, it had to be asked how that person was going to support his family. That was the start of the downward spiral of defaulting on their treatment because they had no food, resulting in drug resistant disease, resulting in progression of the disease, resulting in disability because of the disease, resulting in death. Food parcels and soup kitchens did not reach the people most in need. The people running these programs supported their own family members with it. The chronic illness grant would get to the people who needed it most. TAC complained about these practices at the district offices. It was told to go to the provincial offices with the complaints. There was a land problem. People needed premises to put up their stalls. Some people not educated. When they tried to apply for land usage, or non-profit organization registrations, nobody helped them. There should be a helpdesk to help the people to complete their applications. Not everybody had the same level of education.
TAC did not disagree with the need for a means test. There were people who abused the system, who worked and still accessed the grant. Mr Hamnca agreed that that they should be stopped. But there were cases where people on grants reported to the South African Social Security Agency (SASSA) that they were running a spaza shop, and making a profit of for example R200 a month. That money was then deducted from the disability grant. The money was still too little to meet basic needs.
Ms Nelson asked TAC when a chronic illness became a disability.
Mr Hamnca said that TAC did door-to-door visits to check on the condition of its members. Sometimes TAC discovered that chronically ill members were bedridden as a result of their illness. TAC then informed SASSA to make a house visit and register the person for a disability grant.
Ms Nelson replied that that was exactly the point that she was trying to make. She herself was suffering from asthma and high blood pressure, but was fully functional. She agreed that somebody like herself did not need a disability grant, but indeed that somebody that was bedridden needed one.
South African Council of Churches (SACC) submission
The Rev. Keith Vermeulen, Director of the SACC Parliamentary Office, said that the SACC represented 26 denominations that reached across traditions in South Africa. It thus represented between 15 and 16 million members across South Africa. A large proportion of the membership of the church lived in impoverished communities.
He drew the attention of the Committee to the fact that the timing for the request for submissions came at a period when the church was celebrating the most important event on the Christian calendar, Easter. People left home and many did not have access to the ordinary news sources. He requested that in the future, more popular news media like radio should be used to disseminate information like this.
The SACC supported DPSA (DPSA) slogan: ’Nothing about us without us’ Therefore the SACC supported the longstanding Integrated National Disability Strategy of 1997 and the social model of disability above a medical model that focused mainly on the cure of an individual to fit into normal society. (Page 7 of the submission)
The SACC also supported the World Health Organization’s definitions and definitions within the Consolidated Report of the Committee of Inquiry into a Comprehensive Social Security System for South Africa (also known as the Taylor Committee), which was released by the Minister of Social Development on 2 May 2002.The SACC had gave its unequivocal support to the Taylor Committee Report.
Quite clearly, following reports of the haphazard manner in which decision were made on disability grants there remained a need for an intergovernmental panel consisting of Social Development, Health, Education, Finance, Transport, as well as the Office of the President to jointly make decisions more consistently across the nation. This diversity should apply to an assessment panel for the disability grant as well.
Therefore, as the Taylor Report encouraged, the SACC recommended dropping the means test, which generated indignity and dishonesty, in favour of a needs test by an integrated panel, able to assess the needs of the applicant to enable him or her to function as effectively within community as possible.
As recommended by the Taylor Committee Report and currently motivated by the Black Sash, the disability grant should be allowed to cover upon medical assessment, people suffering from HIV/AIDS, with a CD count below 200 as well as people suffering from chronic illnesses.
SACC drew Members’ attention to the last paragraph of the submission with the heading” Social Protection for All”, which was an extract from the Taylor Committee Report.
Ms Mafolo said that she was familiar with the SACC at a constituency level, because the clergy at community level were affiliated to the SACC, but she missed the logo of the SACC on the submission. She agreed that all the governmental departments mentioned should be part of the panels that would seek to, from Government’s side, address the challenges of the disabled and chronically ill. She liked the slogan “Nothing about us without us.”
Ms Mafolo noted that the SACC had agreed with the Black Sash and the TAC that people with chronic diseases should be given a grant. But she sketched the scenario of a person who was relatively healthy and working and was thereafter diagnosed with HIV. This person was then harassed and teased at work for being HIV positive. Because the person knew that she could receive a grant, she gave up her job and stayed at home. She indirectly asked the panel whether a grant would not encourage this scenario amongst the chronically ill. She said that the Committee represented Parliament as well as other stakeholders and that the Committee would discuss and communicate with the parties that had made submissions.
Ms Tshwete asked what the SACC’s understanding of the definition of children was.
Ms Nelson referred to a point in the submission where it said that when a person was being assessed for a social grant, not only the medical, but the socio-economic situation of the person should be taken into account. She wanted clarity on that matter from the SACC and said that it had to be thought through and discussed again. The costs and the impact had to be considered as well
Ms Gcume said that the SACC represented the whole country. The Committee would look at all the submissions. The questions asked were for the sake of clarity.
Ms Tshwete asked for clarity on the definition of disability and if the same definition applied to children.
Ms Kopane said that under the heading “Short Term Measures” the SACC argued for the “revamping of the medical and assessment forms. It had recommended the inclusion of sensory and intellectual disabilities. The disability sector could assist with this process”. She wanted the SACC to elaborate on that and what it thought about the Harmonized Assessment Tool (HAT). The “Short Term Measures” had also suggested removing the criteria of spouse’s income in the means test. Only the income of the person with the disability should be measured, not the household income. She asked for clarity on this issue. The “Short Term Measures” also suggested establishing an appeal mechanism. She asked what was wrong with the existing one and whether The SACC was suggesting something new.
She said that the SACC had made much reference to the link between poverty and disability. It had also mentioned that it endorsed Disabled People South Africa. Was Disabled People South Africa part of the South African Council on Disability or the South African Disability Alliance? She was not too sure about it. She said that if SACC did not know, maybe the Department could assist. She asked whether the definition of disability as it stood in the Bill, would severely disadvantage the disabled community or increase the poverty level.
The Rev. Vermeulen said that he found the responses and questions very illuminating. He said that the SACC did not claim to be experts on social assistance or disability. The SACC had consulted with organizations in the disability sector, mainly the Disabled People South Africa and the Black Sash. Disabled People South Africa could answer for themselves on their associations within the disability sector. He said that he could provide the Department with a logo and thanked the Member for the understanding of the nature of the SACC. A Member had said that the SACC was representing the whole of South Africa. He wanted to respectfully set the record straight. Statistics had indicated that roughly 80% of South Africans were of a Christian persuasion and the SACC represented a significant portion of those. The SACC was aware that it represented many marginalised, vulnerable South Africans in poverty stricken communities.
The Rev. Vermeulen said that the SACC was glad that there would be ongoing engagement with the Committee and with the other stakeholders on the issues under discussion. Concerning children his understanding was that the draft Bill itself spoke about the qualifying age for a disability grant as 18 years of age. Qualifying for the disability grant was different from qualifying for the child support grant and care dependency grant. A care dependency grant allowed the family to care for a child who had a physical, mental or sensory disability. In saying that, the SACC did not underplay the importance of disability. When in 2005, The SACC made submissions on the Child Act, Disabled People South Africa objected to having a separate grant for disabled children. In terms of social description and of categorizing people, there was fluidity when it came to disability. Sometimes the distinction between what was normal and what qualified as a disability was very vague. The SACC decided to stick to the definition to look at the available grant from adult age. In terms of working relationships there was the employment equity act, which had its own definition. Children should not be working, legally speaking, so the Employment Equity Act said nothing about them. He was glad that the Committee was working in the inter–governmental framework, because these kinds of discrepancies and anomalies could only be sorted out in a social model
which took seriously the relationship with for argument’s sake, the DoH and DSD.
The Rev. Vermeulen said that people with disabilities particularly struggled in the area of transport. The medical model measured the person against what was medically normal. Disabled People South Africa had concerns with that model. People with disability could not make use of usual mode of transport. That issue needed a separate more concerned effort to address and can probably be best addressed in this inter-governmental framework which took the National Disability Strategy more seriously. That was why the question about the Strategy proposed in 1997, was raised. It needed refinement of definition and model.
The Rev. Vermeulen wanted to highlight the importance of the SACC’s adopting a holistic approach to dealing with disability. It was reflected in the kind of proposals that it had highlighted in the Integrated National Development Strategy and the Taylor Committee Report. While the DSD was one part of the broader spectrum of dealing with the intergovernmental panel, the importance of adopting a holistic definition was of significance and importance, because disability, according to the World Health Organisation (WHO) was fluid and not a category with sharp distinctive characteristics necessarily. In terms of assessment, a social model was proposed, not that the medical model was unimportant, but the medical model had to be looked at in a holistic way when assessing a person’s need for a grant.
The Rev. Vermeulen had spoken about the roles for the Departments of Transport, Social Development, and Health, but a fundamentally important part of this was the part played by the Department of Finance and Economic Development, which made decisions on how resources were distributed towards social assistance.
The SACC’s view was that the poor were very often stigmatized as people who did not want to pull themselves up by their bootstraps. It was an argument that had economic implications. People were poor and disabled because of the society that they lived in and because of the nature and the characteristics generated by the choices of society, and very often the choices of society by the politicians and the legislature determined what kind of quality of assistance could not be given to social assistance. Those decisions needed to be challenged and there was an opportunity to do it through the Money Bills Amendment Procedure and Related Matters Act 2009. The macro-economic proportional expenditure should be challenged.
It was important to have this discussion within the broad intergovernmental framework. It should not become an issue of economics. The DSD had a responsibility to the marginalized people not to create a definition that excluded them. That was the beauty of the basic income grant.
SACC asked why in the second decade of democracy there was still a lack of implementation and the lack of recognition of the basic income grant and the integrated developmental strategy? SACC did not expect an immediate answer, its constituents needed answers. Basically they had accepted Government’s way of dealing with these issues in 2001. The only answer that the Parliamentary Office could give them was that this was the response of Social Development. SACC expected some engagement from DSD as well as Cabinet to provide answers.
The SACC did not promote a basic income grant to allow people to be lazy and not work. There were people who, through chronic illnesses, lost highly paid, professional jobs. Such people needed help.
SACC acknowledged that the Government had done a very good job of the increasing of social transfers.
Mr Puseletso Loselo, Chief Director, Legal Services, DSD, said that the observation of Ms Tshwete was correct. DSD’s legal department had had a discussion the previous day on the implication of the definition of disability as it appeared in Section 1 and its relationship with Section 7 dealing with care dependency. He had also conferred with colleagues and the Parliamentary Legal Adviser on its implication. He said that the intention was to have different tools to determine disability in adults and to determine disability and the need for permanent care in children. There would be different tools. There would be a special definition dealing specifically with care dependency.
The Chairperson said that the fit-for-work issue would obviously not apply to children under South African law.
Ms Lizette Berry, Children’s Institute, University of Cape Town, presented on behalf of DART and Disabled People South Africa .
DART and Disabled People South Africa submitted that, in Section 1 of the Social Assistance Act, ‘‘ ‘disability’, in respect of an applicant, means a moderate to severe limitation to his or her ability to function as a result of a physical, sensory, communication, intellectual or mental disability rendering him or her unable to (a) obtain the means needed to enable him or her to provide for his or her own maintenance; or (b) be gainfully employed;’’
Ms Kenye said that impairment would cause confusion. It was used in other contexts as well.
Mr Loselo said that the term “disability” would remain. “Impairment” would be in the body of the definition.
Ms Tshwete said that this issue should be flagged and discussed.
Ms Kopane gave the WHO definition of disability.
The Chairperson asked whether DART formed part of the South African Disability Alliance, one of two broad organisations representing disabled people.
Ms Berry said that the organisations which she represented had asked her to convey the message that they felt that there had not been enough time to consult.
The Chairperson thanked the Members for their vigorous interaction.
The meeting was adjourned.
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