Disability,cash transfers and family practices in South Africa

Abstract

Relative to other low and middle-income countries, South Africa provides a generous set of cash transfers (social grants) targeted at people with disabilities. This article explores the influence of disability-related grants on family practices and configurations, care arrangements and household composition in the Western Province of South Africa. The article draws on the findings of two studies: 1) an ethnographic study of disability grant recipients and applicants in a low-income Cape Town community and; 2) a study of interactions between healthcare staff, disability grant applicants and their families. Findings show that disability grant income is shared within households and the contribution of a stable income provides opportunities for people with disabilities to exercise agency, be seen as valuable household members and secure care and support from other household members. However, conflicts may arise over how income is shared and may lead to the extortion, abuse and neglect of people with disabilities, particularly in cases of severe disablement. Given the lack of adequate social provisioning for those who are able-bodied and unemployed, disability also becomes highly valued in households and the potential suspension or cancellation of a grant can interfere with adherence to treatment. The study emphasises the influence of policy structures and economic conditions on household dynamics and care outcomes and contributes to the sparse international evidence-base on the role that disability welfare benefits play in household dynamics and care outcomes.

Keywords

care policy care practices disability household dynamics social grants

Introduction

People with physical, mental, sensory and intellectual impairments face impairment-related, as well as social, economic and environmental barriers to participation in the mainstream labour market. Households with a disabled member often face significant financial constraints brought about by loss of work income and additional costs such as assistive devices, healthcare costs or travel expenses. Households may also face challenges related to caregiving or experience stigmatisation, social exclusion and reduced social capital (Gona et al., 2011; van der Mark et al., 2017; Gooding and Marriot, 2009).

In recognition of the vulnerability of individuals and households with disabilities, the South African government provides a set of three disability-related social cash transfers or ‘social grants.’ People with disabilities who are unable to compete in the open labour market, and caregivers of children with disabilities are paid an equivalent amount of (R1600 or $135) in the form of the Disability Grant (DG) and Care Dependency Grant (CDG), as well as a small additional Grant-in-Aid (R380) to DG and Old Age Grant (OAG) beneficiaries with functional limitations who need permanent care.

The disability ‘category’ is highly complex and fluid and is difficult to define and measure for social protection purposes. In the South African social grant system, people are categorised as ‘disabled’ if their functional limitations make them unfit for work, whether on a temporary or permanent basis. While people living with HIV or other chronic illnesses are not necessarily disabled, or do not identify as disabled, high levels of poverty and unemployment, unclear policy directives and the provision of disability grants to some chronically ill people (particularly at the peak of the AIDS epidemic in the early 2000s) have blurred these lines.

Although these grants are paid to individuals, research has demonstrated that households tend to pool resources (Budlender and Lund, 2011; Makiwane et al., 2016) and social grants perform an important welfare function in poor households as they are typically shared. As a result of high levels of structural unemployment and poverty, many households are vastly, if not completely, reliant on the income of social grant beneficiaries. The payment of grants has been shown to influence kin support networks and household formation (Klasen and Woolard, 2009; Bertrand et al., 2003), with dependents often becoming ‘unintended beneficiaries’ (Burns et al., 2005) of the social grant system.

There is a fairly large body of literature on the household dynamics and politics of social grant sharing around the Old Age Grant (OAG) and Child Support Grant (CSG), which is discussed in detail in the introduction to and other articles in this special issue. Comparatively little has been written about the influence of disability-related social grants on family practices (Morgan, 2011), family configurations (Widmer, 2016) or care arrangements in South Africa. There has also been very limited study of these concepts in relation to welfare provision for disability internationally. While there is some research on caregiving for the sick and orphaned children in the context of the AIDS epidemic (Evans and Atim, 2011; Knight et al., 2016; Schatz and Ogunmefun, 2007), social constructions of family and caring in disability-affected households in African countries are understudied (Livingston, 2005; Warren and Manderson 2013; Manderson et al., 2016 are exceptions).

This article focuses on family dynamics in relation to social grants paid on the basis of disability. More specifically, it explores the interaction between state provision, economic conditions, social and cultural attitudes towards disability, expectations and obligations around kin support and family practices and configurations. Family practices can be understood as everyday activities that construct and affirm relationships between family members, which at the same time give these social actions meaning (Morgan, 2010; Cheal, 2002: 12). Family configurations, on the other hand, refer to the evolving patterns of practical, emotional and cognitive interdependencies and conflicts that emerge among family members out of these interdependencies, which adapt to life events, household circumstances and transitions (Widmer, 2013: 5).

These frameworks help move beyond normative ideas about caregiving and the nature of family relationships and focus on actual practices of giving and receiving care. The emphasis here is instead on the control and use of resources, as well as on how this is mediated by the roles, identities and relative power of household members and external structural factors.

The policy context

In 2017, over one million people received the DG. Demand for and receipt of the CDG and Grant-in-Aid are significantly lower, with only 146,666 caregivers receiving the CDG and 184,696 disabled or elderly persons receiving the Grant-in-Aid (SASSA, 2017). This is likely because of relatively low awareness of these grants and bureaucratic obstacles, which were reported by healthcare staff involved in the one study reported on in this article. Salojee et al (2007) found that, in their study sample, only 45% of children eligible for the CDG were receiving it.

The White Paper on the Rights of Persons with Disabilities and several legislative measures are in place to promote the independence, employment, self-representation and inclusion of disabled individuals, but they are poorly implemented. The state also provides free health care, rehabilitation services and assistive devices to people with disabilities. However, policy implementation is weak and the quality and availability of services is poor. People with disabilities therefore remain less likely to be employed and more likely to be low-wage earners, may struggle to access education, health or rehabilitation services and face significant discrimination at all levels of society (Grut et al., 2012). As a result, many people with disabilities are exclusively dependent on grants for an income.

The state emphasises family- or community-based support for people with disabilities via social grants. Most social spending by government is allocated to social grants. This leaves little budget available for other state-funded services and programming, and households unable to pay for care in the market are left dependent on underfunded Disability Service Organisations for access to services or support. As a result, costs and responsibilities for care fall largely on relatives (Manderson and Block, 2016).

In the context of high unemployment and limited social protection for the able-bodied unemployed, disability grants are highly valued and people with disabilities may in fact have a greater ability to mobilise an income than many unskilled able-bodied people. Survey data has demonstrated that DG beneficiary households have high rates of unemployment and are more likely to be multi-generational or skip-generational (Mitra, 2010). DG beneficiaries are also likely to be older (Mitra, 2010) and the DG is reportedly used as an unofficial OAG amongst older people who are not yet of pensionable age (60) and who have been detached from the labour market for some time (Kelly, 2017). This makes it probable that, much like the OAG, the DG is used by older adults to support grandchildren and unemployed adults in the household.

While many DG beneficiaries are functionally independent and may in fact provide care to others, people with more severe disabilities may need care or support from either family or other informal or formal caregivers. South African disability policy makes no provision for a personal assistance service system and, in most households, care is provided by female family members (see Reddy et al., 2014; Gouws and Van Zyl, 2014; Manderson and Block, 2016). The majority of care providers for persons with disabilities are single mothers of children with disabilities (Statistics SA, 2014) who may receive little support from fathers and are highly vulnerable to poverty (Salojee et al., 2007).

South African social policy emphasizes the role of informal and traditional ethics of care, mainly by kinship networks and communities (Lorenzo et al., 2015). The White Paper on Families (2012) proposes that family support should reduce the burden of care on society, with the role of the state being to support families to provide that care (Button et al., 2016; Manderson et al., 2016). In practice, there is little focus on the actual capacity of families to provide care or how the state plans to support them in the current White Paper (Morison et al., 2016). Caregiving work is generally undervalued in South Africa and the resources required to provide care are not acknowledged or provided for (Gouws and Van Zyl 2014; Reddy et al., 2014). The White Paper on the Rights of Persons for Disabilities (2015) adopts the same framework of care provision as the White Paper on Families. It does propose the development of an inter-sectoral plan to provide support to families caring for persons with disabilities, but no such plan yet exists. As a result, the struggles of families with disabled people are left largely invisible and unattended to by government programming (Manderson et al., 2016). Manderson et al. (2016) argue that policymakers’ romantic notions of families do not reflect actual arrangements. In reality, the radius of responsibility within families in SA has shrunk over time, making it harder to spread the care workload, resulting in insufficient care or support from kin (Button et al., 2016: 2).

Methodology and context

This article draws on data from two qualitative research studies on disability-related grants in the Western Cape. The first is an ethnographic study of a low income community on the outskirts of the Cape Town metropole, and their perceptions and use of social grants. The second is a larger study of the interactions between medical professionals, applicants for disability related grants and their families in the Western Cape.

A number of illustrative examples have been drawn from these studies to show how families negotiate spending of the grant and care arrangements, both within and between households. These cases provide insight into household experiences, but are limited in their generalisability, particularly outside of urban contexts, where kinship norms and relationships may differ. Both studies focused specifically on grant beneficiaries and the data therefore largely reflects their experiences rather than those of other household members. The methods used for each of these studies are briefly outlined below.

Community study

The community study was conducted over eight months in 2012. The community is a formal relocation settlement of 1,800 metal structures on the outskirts of the city, which is estimated to be occupied by between 4,000 to 12,000 people. It has a reputation for being a ‘dumping ground’ for Cape Town’s homeless and dispossessed, and with its big fence, rows of bleak zinc corrugated iron structures and police presence, has frequently been compared to a concentration camp by the local and international media.

Data for the community study was collected using a combination of participant observation, unstructured interviews, focus groups and ‘participation action research activities’. As an able-bodied, white and privileged person, it took time to build trusting and equitable relationships with community members and participatory research practices were important in overcoming barriers of race, language and class. My whiteness and perceived wealth made my entrance into the community easier in some ways because I was seen as a potential resource by community leaders who were eager to link me to participants and provide me with the protection and guidance I felt I needed as a young female entering a high-crime area. However, I also experienced significant pressure from them for ‘donations’ of food and clothing, which made navigating the ethics of consent and relationship-building more difficult. It was only when I began to build relationships with individuals outside of community leadership structures that I was confident that neither I nor participants were being exploited by the research process. This relationship building was achieved by spending time in participants’ homes and participating in community activities. Whilst our economic and social realities remained vastly different, I knew I had finally been accepted when whilst working in the host’s kitchen to prepare food for one of the focus groups, I overheard one of the ladies comment: ‘She can come live here, she just makes herself at home; she doesn’t worry’. Where I could, I provided participants with information, advice, transport and other resources to assist them in accessing health and social services. In doing so, I also learned from their experiences of navigating the social grant and other government systems. Participant observation data from the study has been included in this article, particularly in the telling of the stories of Nomakhwezi, Samuel and Mary, which are discussed in the findings.

Although 32 people were formally involved in the study, research activities centered primarily on the stories and experiences of a group of ten people accessing or seeking access to DGs in the community. These participants each took part in 2 to 5 of the focus groups held (comprising 6-8 people) over the course of three months, as well as individual interviews and numerous informal engagements, which informed my understanding of their family dynamics over time. These participants formed an informal support group as a result of their involvement in the study.

The majority of the 32 participants identified as ‘coloured’, reflecting the broader demographic makeup of the community. The remainder of participants were black (3) or white (5). Eight of the participants were male. The support group included people living in a variety of household structures: a cohabiting couple living with two children; two cohabiting couples with no children; a married woman living with her husband and her paternal family; a widowed woman living with two of her three children; one single woman living alone; two single women living with their grown children; and a young man living with his parents.

All participants were beneficiaries, former beneficiaries or people attempting to apply for disability grants (no one received a CDG or GIA). As result, the study mostly reflects the perspectives of one individual within the household, except in the three cases where more than one family member received a grant or was attempting to obtain one. At the time only one of the participants needed significant care and assistance, which was provided by his girlfriend, who was also a disability grant beneficiary.

A significant majority of participants were receiving the DG because of chronic illnesses such as HIV/AIDS and mental illness, or temporary illnesses such as tuberculosis, rather than permanent sensory, physical or intellectual disabilities. DG beneficiaries qualifying on the basis of chronic illness typically only received temporary grants for periods of six to twelve months and many were stuck in a constant cycle of losing their grants and reapplying because they could not find work.

Study of healthcare professionals and disability claimants

Data for the study on healthcare interactions were gathered via interviews and focus groups with healthcare workers, South African Social Security Agency staff, policy makers and observations of doctor-patient interactions in twelve clinics and three hospitals (including a tertiary, district and psychiatric hospital) in the Western Cape province between October 2013 and August 2014. Twenty-four doctors were interviewed, of whom 17 were observed conducting a total of 216 consultations with patients. Twelve social workers, nurses and occupational therapists also participated in the study through interviews or focus groups. Data was also collected in less formal ways. For example, when doctors were casually talking amongst themselves or consulting with one another on cases and in the corridors when I was talking to patients, who were often eager to share their experiences with me. In this study my position as a researcher was much less complex because as a non-expert I had little power in healthcare facilities where my research took place and I was subject to rigorous permission processes and protocols.

Data analysis

Field notes and transcribed interviews and focus groups from both studies were analysed using qualitative data analysis software (NVivo). Coding took place throughout the data collection period, using open coding to identify concepts and categories. Once data collection was complete, data were recoded thematically and selective coding was used to identify medical interactions or community case studies that represented certain themes, ways of understanding and patterns of behaviour. Preliminary findings were presented to South African Social Security Agency officials, doctors, social workers and occupational therapists and, in the community study, to community members and community development workers.

Ethical considerations

Ethical approval to work in healthcare facilities was received from the University of Cape Town Human Research Ethics Committee and ethical approval to work in the community setting was provided by the University of Stellenbosch Health Research Ethics Committee. In both studies, all participants gave informed consent and the anonymity and confidentiality of the data collected from all participants was maintained throughout the research process. Participants were, however, advised that confidentiality could not be totally guaranteed in a focus group settings. Participants’ anonymity has been preserved through the use of pseudonyms to describe both individuals and health care facilities.

Beyond the formal ethical protocols required by the ethics committee, my research approach was driven by the ethics of care and ethical self-consciousness and I tried wherever possible to add value to the community I worked in rather than to only avoid harm.

Sharing and spending money from disability grants

In households involved in the community study, grant beneficiaries were expected to share their income with other family members. Given the extent of unemployment in the community, DGs and CSGs were, in many cases, the only sources of household income.

Being considered the ‘breadwinner’ created opportunities for people with disabilities to have decisional autonomy, exercise agency within households and be seen as valuable household members, despite requiring assistance from others. In a few cases, the grant allowed beneficiaries to create more sustainable livelihoods or at least stretch the grant to the end of the month through micro-business activity. However, being the ‘breadwinner’ also placed significant stress on beneficiaries who indicated that they experienced significant pressure from other family members in terms of how the ‘pot’ of money would be divided within the household. Most people interviewed were supporting non-disabled unemployed family members and their children, as well as their own immediate families, with their grants.

Jessica, who has received a permanent DG her whole adult life (as a result of severe back problems after being hit by a car as a child), complained that she has never had the opportunity to live alone with her husband because her one-roomed structure was inundated with family members who relied on her grant for food. Although her husband worked as a day labourer in the construction industry, her income was seen as more reliable because his work was unstable and irregular. Another participant, Mary, was supporting her two children, as well as her boyfriend, Samuel, on her DG and two CSGs. The CSG is insufficient to fully cover the needs of a child and therefore much of her DG went into the cost of school uniform, clothing and stationery for the children, as well as food and electricity for the house. Although the government has stated that school-fee exemptions should be available to all parents unable to afford fees, there appears to be very low awareness and implementation of this policy in the area and many participants struggled with the cost of fees.

For ten seconds you’ve got your own money! . . .The disability is not enough. It’s more stress when you get the money than it is without it because your whole family depends. When it’s payday they’ve already worked out what they want. Your house is full! (Mary)

Mary also experienced pressure outside of her household from her adult daughter, as well as other people in the community who knew that she received a grant. She was initially hesitant to reveal to me that she received a DG because she feared other people finding out and asking to borrow money from her.

Division of the grant and care of children within families could lead to fighting or even violence within families, especially where drugs or alcohol were involved. Jessica frequently fought with her sister-in-law, who refused to contribute her CSG to the household but benefitted from Jessica’s grant. Often recipients were extorted or robbed by their children or other household members for drug money. On focus group participant, Penny, noted:

No one is working; no one is helping you inside the house. Maybe you’ve got a boyfriend that is busy with drugs, stealing your money, stealing your things, stealing other people’s things, so you take your money and pay those people - unnecessary debts that are coming to you because of poverty. (Penny)

Every time Mary went to collect her grant at the South African Social Security office, she faced the threat of physical violence from her drug-using 26-year-old daughter, who lived in another part of the township with her young child and demanded a share of the cash.

Every month she is waiting for me at the AllPay [payment point], shouting at me. She beat me last year. She told her friends ‘naai her up’. They kept my hands and she pulled out my hair – the blood was running in front of my tooth. Every month she waits there at the AllPay: ‘Ah ha, I’m here. Come, the money.’ (Mary)

This relationship deteriorated further whilst I was in the field, when Mary learned her daughter had been racking up debts at the local ‘spaza’ shop (informal convenience store) under her name. Disability grant beneficiaries are often extended credit by stores and both formal and informal money lenders because, unlike many people in the community, they have a guaranteed monthly income. Going into debt was very tempting, particularly for parents who had children to support or received temporary grant, with the latter feeling an urgency to maximise the impact of the grant on their household whilst they had the opportunity. However, these loans came with high administrative and interest costs and present what Mosoetsa (2011: 35) as a ‘non-viable survivalist livelihood strategy’ because of their potentially detrimental effects on borrowers in the long term.

Household care arrangements

Care relationships and activities are often informed by life circumstances and the attitudes of ‘give and take’ that inform other aspects of family relationships (Warren and Anderson, 2013). While grants can help families to stay intact (Manderson and Block, 2016), they can also drive movement of kin between households, particularly when an individual needs care.

In the community, care arrangements in households were fluid and pragmatic, with care of people with functional limitations and children strongly (but not exclusively) driven by the availability of resources. Few residents were able to access private care services and community health and development workers in the area provided little concrete support. Most caregiving work was therefore performed by kin with little external assistance.

Care for children

Like with other social grants, income from disability-related grants shapes care arrangements for children. This illustrated by the case of Nomakhwezi, one of the few black participants in the community study. She had been receiving a temporary DG because she was suffering from an HIV/AIDS-related illness, but had recently lost her grant as her health had improved. She was struggling to find work because her English was poor – a common challenge faced by those migrating to Cape Town from rural areas. She had two young children and an adult daughter and had been widowed by AIDS. She had used the money from her DG to live independently of her husband’s family, moving in with her eldest daughter who was employed in a local supermarket. Nomakhwezi sent her son to live with her mother in another township to save on groceries and provide him with what she considered better educational opportunities. Her mother received an OAG and could therefore take on the responsibility for his care, while Nomakhwezi could use her DG and the two CSGs she received to support herself and her young daughter.

As noted by Button in her article in this themed issue, grandmothers often take on such care responsibilities. One paediatrician working in the AIDS field, who was interviewed as part of the second study, indicated that she applied a very low threshold of disability when making assessments for Care Dependency Grants. She felt this was necessary because many of these children were being cared for by grandmothers who were using their OAGs to support them.

In Nomakhwezi’s case, this arrangement faltered when her mother was diagnosed with multi-drug resistant tuberculosis and admitted to a specialised hospital for an extended period of time. In the grandmother’s absence, other family members living with Nomakhwezi’s son began to demand a share of his CSG in return for caring for him. Left with only her daughter’s CSG to live off of, she could not afford to pay anyone to look after her three-year old daughter whilst she sought work, making it very difficult for her to exit the poverty she had found herself in.

Grants as incentives for caring for people with disabilities

Livingstone (2005) and Manderson et al. (2016) have shown that care arrangements for people with disabilities are often negotiated and dependent on multiple planes, including the emotional, social, economic and moral, as well as kinship ties.

In cases where household members were severely disabled, grants provide opportunities for unemployed household members to be compensated for their caregiving work. In low-income households, sick and disabled children and people can be seen as burdensome, both in terms of their care needs and the affordability, availability and accessibility of services for disabled people in the context of poverty (van der Mark et al., 2017). Care work is difficult and stressful, and caregivers may suffer from burnout and depression. In higher income settings, people may feel hesitant about being remunerated for caregiving (Manderson and Warren, 2013), but in low-income contexts, disability-related grants can provide important support, as well as incentive to poor families to care for disabled household members. This incentive exists because of the scale and structural nature of unemployment, poverty and inequality in South Africa. The labour market is unable to absorb large numbers of able-bodied unemployed people who were disadvantaged by apartheid and lack the credentials, skills and social and cultural capital to secure regular and well-paid employment in an economy that is becoming increasingly skills-intensive and where most labour-intensive work has been pushed into the precarious informal economy (Seekings and Nattrass, 2015). To those with poor employment prospects, social grants often present the only viable strategy for a stable household income, which motivates households to include and care for people with disability-related grants.

The negotiability of care arrangements is demonstrated by the case of Mary and Samuel, who were in a relationship and living in Mary’s house, together with Mary’s two children. Mary was HIV positive and, according to her, so was Samuel, but he refused to admit it. Although I couldn’t confirm it, it seemed that he also suffered from some form of drug resistant tuberculosis as health workers had attempted numerous times to move him from his home into a facility; presumably to isolate him. Mary was receiving a temporary DG, but Samuel, although very ill, did not receive the grant and was dependent on Mary for support. Although he and Mary had a volatile relationship, he was estranged from his family, who refused to provide any financial support or care and Mary felt responsible for him.

During the fieldwork, Samuel’s condition deteriorated, and he became bedridden. He was nursed by Mary, who would carry him to the local clinic. Knowing that her own temporary DG was coming to an end, Mary became extremely stressed as this grant and the two CSGs she received were the only household income and she was heavily indebted. Losing her grant would re-start what for her had been a cycle of constant stress around losing the grant, falling into extreme poverty, getting sick again and then re-applying for the grant. Mary responded to this looming crisis by urgently trying to get a DG and Grant-in-Aid for Samuel. The process of applying for a DG is confusing, bureaucratically burdensome and requires waiting in multiple long queues, exacerbating the exclusion of people like Samuel with limited mobility and means. It was only when he was finally hospitalised and a doctor completed a disability assessment at his bedside, and once I had arranged for an official from the South African Social Security Agency to visit his home to complete his application, that he was finally awarded a DG.

Only a few hours after the visit from an official, Samuel called his family to fetch him from Mary’s home. His family were prepared to welcome him back into their household based on the understanding that he would soon have a monthly income to contribute. This devastated Mary emotionally and financially, as by this point, she had lost her own grant and was heavily indebted. Eventually, Samuel did begin sending Mary R20 to R30 a month to help her buy electricity. While this gesture does indicate that he felt some sense of obligation to reciprocate the support she had provided to him for several years, his move to another household does illustrate the limitations of reciprocity in relationships, which has been shown in other studies to be conditional (Seekings, 2018).

In the second study, social workers and nurses from two hospitals shared anecdotes that indicated that kinship support of sick and disabled people was strongly tied to the potential for grant income. Health workers indicated that grant applications were often initiated by the family, who sometimes applied enormous pressure on healthcare staff or social workers to recommend a grant for a patient. In one instance a nurse noted, ‘We had an incident when the patient’s mother came to hit the social worker. Truly, because of the grant’ (Nurse, Psychiatric Facility). In the other hospital, social workers had removed themselves from the application process because the pressure from families was so intense that they sometimes felt they were in danger.

The state promotes a model of community-based care for people with psychiatric and intellectual disabilities, but policy is poorly implemented and there is limited support or services provided to families who take on such responsibilities. Knowing the value of grant income to households, health and social workers would use grants to incentivise families to take responsibility for mentally ill and intellectually disabled people so that they could be discharged and live at home.

So sometimes the patient. . . actually we blackmail the families into taking the patients if you know what I mean: ‘you will get the grant if the patient stays at home.’ (Nurse, Psychiatric Facility)

While the DG, CDG and GIA do provide monetary incentives to secure household membership or provide care, none of the grants are sufficient to cover the multiple costs associated with disability, or act as a substitute income for a caregiver (Hanass-Hancock and McKenzie, 2017: Hanass-Hancock et al., 2017; Sandy et al., 2013). While the means test for the CDG is relatively generous and should allow caregivers to earn an income, some doctors interviewed in the second study would often refuse to recommend the grant to caregivers who were employed. This was based on their understanding that it was the responsibility of the beneficiary of a CDG to provide full-time care. This effectively limited access to care support, forcing caregivers to choose between employment and a grant.

Household pressure to retain grant income

In the mid-2000s, a number of studies highlighted the pressures faced by HIV-positive DG beneficiaries acting as household breadwinners and related incentives towards ill-health (de Paoli et al., 2012; Nattrass, 2006). While this trade-off between health and income has not been demonstrated beyond anecdotal reports from health care professionals and communities, these studies do highlight gaps in the social grant system that makes no provision for the able-bodied, long-term unemployed.

In the healthcare interactions study, reports of patient nonadherence to medication or rehabilitation regimes by people with various chronic illnesses or injuries were made by several health professionals working in high poverty areas, where recovery rarely resulted in an ability to find employment. Medical professionals were expected to closely monitor compliance and refuse grants to those who were non-compliant with treatment. In the community study, I observed Mary, Nomawkhezi and another woman, Rochelle (who was receiving it for tuberculosis), experience the anxiety of losing a grant. None of them indicated that they would be prepared to sacrifice their health to retain their income and risk leaving their children without parents. They, and others I spoke to, seemed more likely to try find and ‘perform’ disability to a sympathetic doctor to renew their grant. This is also reflected in findings of the healthcare interactions study, which are discussed elsewhere (Kelly, 2017).

In the case of mental illness, some nurses and social workers working for a mental health facility suspected that it was families who withheld medication from patients to keep them ill enough to continue receiving a grant.

Sometimes what they do is they don’t take grant medicine because they need to. . .even the families don’t give the tablets because he must stay sick or she must stay sick so that they can get the grant. (Nurse, Psychiatric Facility)

To reduce potential harm to patients, this particular facility required that when a patient relapsed and had to be re-admitted that the family of patients to hand over the patient’s social grant card during their hospital stay, preventing them of accessing the patient’s money while they were institutionalised.

In cases of long-term institutionalisation, the loss of grant income was also a major concern for individuals and families. According to the regulations specified in the Social Assistance Act of 2004, social grants should lapse six months after a patient has been admitted to a state institution. Tuberculosis hospitals have struggled to keep patients with multi-drug-resistant and extremely drug-resistant tuberculosis in extended periods of confinement because of the potential lapsing of the grants on which patients’ households depend. The exposure of these patients to their families and communities presents a significant public health risk, resulting in a change in policy towards multi-drug-resistant and extremely drug-resistant patients and their grants no longer lapsed¹. In cases where patients were admitted to psychiatric facilities for long periods, social workers avoided reporting the length of stay to the South African Social Security Agency to reduce pressure on household dependents in return for making regular visits and taking patients home for weekend ‘leave’.

Potential for neglect and abuse

As the examples above indicates, children and adults with significant functional impairments are vulnerable to neglect and abuse and the transactional nature of care arrangements in some households can put these groups at risk. For example, there were concerns amongst these same nurses that people with intellectual and psychiatric disabilities were frequently abused and that little of the grant money they brought to the household was spent on the beneficiary.

Nurse 1:

There is lots of room for abuse. Patients get abused. For their patients [Referring to nurse dealing with intellectual disabilities] they can’t talk properly or . . .so there’s a lot of people that exploit the grants - give a good picture but behind closed doors it’s another story.

Nurse 2:

Because they want to make money

Nurse 1:

Oh of course you get this issue where the social worker is so pressured to place the patient that if somebody comes they are so grateful that somebody is actually willing to take the patient so. . . (Focus Group discussion with nurses, Psychiatric facility)

The potential for neglect and abuse is also high among children whose caregivers receive CDGs. In an attempt to address this, one doctor conducting medical assessments for grant applications demanded proof that children were enrolled in a special school or protected employment programme before recommending a grant. He did this because, in his experience, children with disabilities in many communities were stereotyped as having little potential and were given little attention or opportunity relative to other children.

Conclusion

This article has shown how the strength and characteristics of household relationships, interacting with the macro-level environment, influence practices and patterns of kin support, as well as the capacity of households to provide care. It also reveals fault lines in within social policies that aim to address poverty and inequality and integrate disabled people into society. High levels of structural unemployment leave many households dependent on the grants of disabled people and weak policy and programming around care provision for people with disabilities or chronic illnesses places a significant burden on caregivers.

Social grants targeted at people with disability play a vital role in reducing this burden by compensating people, particularly women for the care work they perform in households. Grants also promote interdependency within households, allowing people with disabilities to support households financially while receiving care in return. However, these arrangements may not benefit disabled people or caregivers in the long-term. In the context of unemployment, kinship norms of sharing grant money result in little of these grants being used on the beneficiaries themselves, placing an unfair burden on a category of people that the state has explicitly defined as vulnerable.

When households are reliant on the incapacity of an individual, it also reconfigures the value attached to health and disablement and has negative consequences for the health, well-being and social and economic inclusion of people with disabilities and chronic illness. Concerns around perverse incentives related to disability have provided fuel for the debate around the limitations of a social security system that excludes the majority of the unemployed and the need for a Basic Income Grant or Chronic Illness Grant. However, the government has been very resistant to extending the social grant system outside of existing categories.

This may, however, be changing. Over the past few years the government has been promising comprehensive social security reform with a series of planned policy initiatives that include providing income support to the working-age population. How the Treasury will respond to these plans given current slow rates of economic growth and other pressing demands on the budget remains in question.

Even if household poverty is alleviated through economic growth, job creation and extended access to social grants for other groups, disability-related grants are still nowhere near sufficient to compensate both for the inability to earn an income and poor access to services. Disability rights activists have argued that the government’s spending on DGs comes at the expense of making more meaningful efforts to include disabled people in the labour force (Gooding and Marriot, 2009). Greater investment in community-level support for households affected by disability, as well as supply-side efforts to empower and create opportunities for people to engage in meaningful livelihood activities are urgently needed. The DG has historically been compensatory, targeted at people who cannot work, rather than having any developmental aspects. Whilst providing this type of support is important, it does not align with societal shifts in understanding disability and disabled people’s place and role in society. There are currently very few opportunities for re-skilling people, especially older people, to participate in the workforce in different ways.

Linking re-training and employment programmes to the DG would provide opportunities for people, especially those caught in a cycle of re-applying for temporary DGs, to find work. This will require collaboration between government departments to coordinate other existing programmes such as the Expanded Public Works Programme and the work Sector Education Training Authorities and Job Centres.

Footnotes

Acknowledgements

The author wishes to acknowledge Jan Vorster, Jeremy Seekings and Nicoli Nattrass for their feedback and guidance in conducting this research. This research would have been impossible without the willingness of community members and healthcare staff to share their time and experiences with me.

Author note

An earlier version of this article was published as ‘The Influence of Disability-Related Cash Transfers on Family Practices in South Africa’, CSSR Working Paper 414 (Cape Town: Centre for Social Science Research, University of Cape Town).

Funding

Funding for this study was provided in part by the Economic and Social Research Council (ESRC) and Department for International Development (DfID) in the United Kingdom as part of the “Legislating and Implementing Welfare Policy Reforms” research project.

Notes

Author biography

Gabrielle Kelly is a health and social policy researcher with a PhD in Sociology from the University of Cape Town, an MPhil in Social Research Methods from Stellenbosch University, and a bachelor’s degree in politics and economics from UCT. She is senior researcher at the Samson Institute for Ageing Research (SIFAR). Her research interests include health and social policy, health systems, disability, ageing and programme evaluation.

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