ARTICLES

 

"I am totally isolated": experiences of adults with acquired physical disabilities during COVID-19 pandemic lockdown in South Africa

 

 

Noreth Muller-Kluits^I; Ilze Slabbert^II

^IPhD graduate, Department of Social Work, Stellenbosch University, South Africa https://orcid.org/0000-0003-1337-2199 noreth.muller-kluits@wits.ac.za
^IIDepartment of Social Work, Stellenbosch University, South Africa https://orcid.org/0000-0002-6310-6326 islabbert@sun.ac.za

 

 

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ABSTRACT

The sudden onset of the COVID-19 pandemic impacted various sectors, including social work services to persons with physical disabilities. This qualitative study focused on the experiences of adults with an acquired physical disability who needed social work support. To understand these experiences, an ecological perspective was utilised as a theoretical basis. The study was conducted during the COVID-19 pandemic lockdown experienced internationally, including in South Africa. The impact of the COVID-19 pandemic was found to be challenging for persons with disabilities, specifically in terms of isolation, lack of resources and economic distress. Recommendations for future interventions to address the social needs of adults with a physical disability in disaster situations such as COVID-19 are also presented.

Keywords: disability; social work; COVID-19; pandemic; experiences; South Africa; person with disability

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INTRODUCTION

Although one in seven people has a disability, it is still considered a minority issue. While at least a billion people on earth have a disability, excluding their families which are also affected, the necessary support and recognition remain lacking (Shakespeare, 2018). Barnes (2009) argues that persons with disabilities could be considered a minority group deserving of all the rights and respect granted to any other legitimate minority group.

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) does not provide a specific definition of disability, but rather recognises disability as an evolving concept stemming "from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others" (UNDESA, 2007:1). The World Report on Disability (World Health Organization and World Bank, 2011) further emphasises how, over recent decades, many social and health science researchers have identified the role of social and physical barriers in disability. Within the South African context, The White Paper on the Rights of Persons with Disabilities (WPRPD) defines disability as

imposed by society when a person with a physical, psychosocial, intellectual, neurological and/or sensory impairment is denied access to full participation in all aspects of life, and when society fails to uphold the rights and specific needs of individuals with impairments (RSA, 2016:17).

This study focused on experiences of adults with an acquired disability which occurred after birth (PACER Center, 2004), for example, through accidents, diseases and infections (Careerforce, 2015; Elliott, Kurylo & Rivera, 2002). Since the study took place during the time that the worldwide COVID pandemic hit, specific focus will be given on the experiences of this cohort during this specific time in history.

People with disabilities experience several challenges, which was especially the case during the Covid-19 pandemic. This discussion is based on the findings of a South African study, Muller-Kluits, (2020) aimed at exploring the experiences of adults with acquired physical disabilities in a South African context, specifically during the COVID-19 pandemic lockdown.

 

BACKGROUND TO STUDY

At the end of 2019 news broke about a new coronavirus identified in Wuhan, China. The virus became known as coronavirus disease 2019 (COVID-19). On 5 March 2020, South Africa had its first confirmed case of the virus. Cases grew rapidly and on 11 March 2020, COVID-19 was declared as a worldwide pandemic, with South Africa implementing its nationwide lockdown from 26 March 2020.

To minimise the transmission of COVID-19, various countries started implementing lockdown regulations, restricting any public gatherings (also referred to social distancing), and closing most economic sectors as well as schools. Certain countries even restricted the operating hours of what were known as 'essential services,' such as grocery shops. Wuhan remained under "lockdown regulations" for 76 days, whilst other countries that implemented the world's most extensive and most restrictive mass quarantines included South Africa, India, the rest of China, France, Italy, New Zealand Poland and the United Kingdom (Kaplan, 2020). South Africa's regulations were gradually lifted in stages from May 2020, but with no face-to-face contact allowed in public, (and social work home visits prohibited), the pandemic had already impacted all sectors, including the social work sector.

Figure 1 indicates the regulations that South Africa followed for 35 days during the Level 5 lockdown (South African Broadcasting Commission News, 2020).

No person could leave their place of residence unless to perform essential services, obtain essential goods, collect a social grant, or seek emergency, life-saving or chronic medical attention during the period of lockdown (Cape Town Travel, 2020).

Although it is unlikely that having a disability alone put someone at higher risk of contracting COVID-19, many people with disabilities have specific underlying conditions or are immunocompromised, which makes the disease particularly dangerous for them (RSA, 2020; World Health Organization, 2020). Because of this potential risk, as well as the social distancing restrictions, the study was restructured to be done remotely using technology such as cell phone calls, or VOIPs (Voice over Internet Protocols) such as WhatsApp and Zoom.

South Africa is geographically divided into nine provinces, each of which is guided by unique governmental structures and policies aligned with national legislation. Due to the nature of data collection being done virtually, the research area was spread over three of these nine provinces. The research area allowed for the contribution to indigenous knowledge on disability, which takes into account the unique South African context and its correlating policies, such as the White Paper on the Rights of Persons with Disabilities (WPRPD) (RSA, 2016).

The Department of Social Development released the WPRPD in 2016. According to this policy, people with disabilities should be allowed to enjoy their full political, human, social and economic rights as equal citizens in South Africa. They should also be able to participate fully and equally in mainstream social and economic life and be given the right to live and work in safe and accessible environments free from discrimination, harassment and persecution. This policy identified several pillars to guide the inclusion of people with disabilities. Within this policy, Pillar 3 of the WPRPD indicates that State Parties are required to recognise the right of people with disabilities to live in the community with equal choices. Pillar 4 aims to strengthen economic independence and ensure a dignified life for people with disabilities through empowerment, including early childhood development, lifelong education and training, social integration support, access to lifestyle support, supported decision-making, and strengthening recourse mechanisms. Pillar 5 focuses on reducing the economic vulnerability of people with disabilities through addressing disability, poverty, development and human rights; ensuring access to decent work and work opportunities; and reducing the cost of disability for people with disabilities and their families (RSA, 2016). Social work services to people with disabilities are guided by the WPRPD.

A Country Report compiled in 2021 indicated the steps to be implemented by the South African government in an attempt to combat the devastating effects of the Covid-19 pandemic in South Africa. Various professional experts worked together to compile this report. The report identifies certain vulnerable groups, including people with disabilities (Vogel, Maree, Köhler, Stanwix, Bhorat, Sodi, Ubomba-Jaswa, Drimie, Mbhenyane, Symington, Adebayo & Ndinda, 2021).

It is important to distinguish between the (contextual) vulnerability that already exists in a specific context and the (outcome) vulnerability that is generated by a shock or a stressor, both of which were present during the Covid-19 pandemic (O'Brien, Eriksen, Nygaard & Schjolden, 2007). Understanding this difference is important for setting up interventions. Vulnerability has been defined as a condition of being "disproportionally exposed to risk", especially in the context of the Covid-19 pandemic (The Lancet, 2020:1089) which can change over time, i.e. one's vulnerability can be different at the beginning of the pandemic than a few months later. Addressing vulnerability (Blaikie, Canon, Davis & Wisner, 1994) remains challenging in terms of, firstly, identifying vulnerable groups and, secondly, aligning interventions to address these vulnerabilities.

According to this Country Report (Vogel et al., 2021), vulnerable groups included persons with disabilities who have been impacted by the COVID-19 pandemic in terms of spatial inequalities in access to services, food insecurity, as well as lack of access to healthcare due to a lack of access to transport, money pressures, and the fear and risk of contracting Covid-19 at healthcare facilities.

 

THEORETICAL FRAMEWORK

The ecological perspective was chosen as the theoretical framework for this study to explore the experiences of people with disabilities on a micro, meso, exo and macro level. Bronfenbrenner (1979) indicates the vast influence the environment of a person plays in his/her life. This is particularly relevant to a person with a disability, who relies on a supportive environment to perform the activities of daily living. Harris and Graham (2010) agree that environmental influences have a major influence on a person's well-being, and in the case of people with disabilities, an unsupportive environment could create tension and stress. It is important to recognise that a person with a disability is closely linked with and depends heavily on a range of different social systems, such as the family, economic and transport systems.

The ecological perspective thus extends beyond people with disabilities and their social environment (Kahana, Kahana, Johnson, Hammond & Kercher, 1994) to include various other social institutions (Leiter, 2004). This includes the exchanges between people and their physical and social environments (Koopman, 2003). Social affordances such as housing, transportation and the built environment cater almost exclusively to people without disabilities (Watermeyer, 2006), forcing people with disabilities to negotiate inaccessible environments, practices, devices and bureaucratic procedures that leave them experiencing alienation and the feeling that their communities have not been structured with them in mind (Koopman, 2003). The social experiences of people with disabilities could be analysed further from two angles, i.e. support (services) used and support needs still not met.

It is clear from the above discussion that each individual forms part of a nested system within which the different systems influence each other. Supportive systems can enable a person to cope with stressors in life, but lack of support could be detrimental. In the current study the experiences of people with disabilities needed were investigated, specifically during the COVID-19 lockdown in South Africa. For this study, the micro, meso and macro levels of the ecological perspective were utilised to explore the experiences of adults with acquired physical disabilities in a South African context during the COVID-19 pandemic lockdown.

At the micro level people with disabilities have been reported to rely on the support of family members to assist them with the activities of daily living (Muller-Kluits, 2020). During the lockdown, respite services were not available and the person with a disability and the family had to cope with extra tasks and chores on their own. On the other hand, the meso system refers to interconnections between two or more interactions outside of the immediate environment, such as school and peer influences. It includes the need for extended family support and professional support and understanding.

On the exo level the community context is relevant. Elements on this level that could influence a person with a disability are recreational and educational resources. The media could also play a significant role on the lives of people with disabilities. One example of this is the fake news that was spread during the COVID-19 pandemic, when a significant number of people were influenced by what they saw and read on social media. On an exo level the community often overlooks the unique circumstances and needs of people with disabilities, for instance, lack of tarred roads or ramps.

On a macro level, the availability and accessibility of services are relevant. During the lockdown these services were scarce and inaccessible, causing stress for several people with disabilities. On a macro level service delivery is often challenged by a lack of resources and funding, and overcrowded hospitals (Pardeck, 2015; Parker, 2011; Teater, 2014). Social workers who render services also lack the necessary support and manpower to render services effectively.

The lack of access to services and support across these levels highlighted three categories of impacts on persons with disabilities and their families that will be discussed here. Many studies were conducted during the period of the COVID-19 pandemic that focussed on the pandemic and persons with disabilities (Armitage & Nellums, 2020; McKinney, McKinney & Swartz, 2020a; 2020b; Reed, Meeks & Swenor, 2020; Turk & McDermott, 2020). These studies highlighted how persons with disabilities are often overlooked in terms of their needs, especially in terms of health care, during disaster situations such as a pandemic. Studies such as those by Ned, McKinney, McKinney and Swartz (2020) and Senjam (2020) reported on how this pandemic has had an impact on persons with disabilities in terms of their access to services and other resources necessary to address their specific needs. Aligned with these studies, this study has explored the experiences of adults with acquired physical disabilities during the COVID-19 pandemic national lockdown.

 

RESEARCH METHODOLOGY

This study made use of a qualitative approach. One strength of qualitative research is the extent to which it represents participants' own perspectives on the research (Grove & Gray, 2019). Qualitative research thus allows the social work profession to learn from those they serve (Council on Social Work Education, 2012). This was true for this study, as the research was done with a vulnerable service user group (adults with an acquired physical disability) regarding their experiences during COVID-19. A descriptive and explorative design was utilised, where the literature and research conducted on the research topic were analysed and described, and the experiences of people with disabilities were explored through an empirical study (Creswell & Poth, 2018).

The research study took place within South Africa's geographical boundaries. Once the COVID-19 pandemic reached South Africa, with lockdown regulations being implemented just as the semi-structured interviews were about to start, the data-collection methods had to be redesigned. This also meant that the research proposal had to be resubmitted to the Research Ethics Committee to allow approval for remote interviews using technology instead of the planned face-to-face interviews (Muller-Kluits, 2020).

The planned method of sampling was purposive sampling, but due to the COVID-19 implications, the gatekeeper organisation, an NGO rendering services to people with disabilities, was not able to conduct home visits or work from their offices, where they had access to their client files to identify all potential participants. No social work home visits or meetings for higher education representatives (including face-to-face research) were allowed under lockdown regulations.

Therefore, both purposive and snowball sampling were utilised to access potential participants for the study. An information pamphlet was used to provide potential participants with more information on the research. Nonetheless, the gatekeeper organisation was still involved in the sampling process, since they requested the researcher to utilise snowball sampling where they did not have access to enough participants. Many participants indicated that they knew other possible participants who could participate in the study and would refer the details of the study to them for consideration (Muller-Kluits, 2020).

Participants were given choices in the different interview methods (i.e. online, WhatsApp or call) and all participants participated voluntarily. In terms of telephonic interviews, much as in face-to-face interviews, ethical considerations included limitations and analysis (Carr & Worth, 2001). WhatsApp would raise some of the same concerns as telephonic and Zoom interviews. However, if WhatsApp voice notes were used, a recording of the interview would still need to be transcribed. Precautions were taken to still do interviews in a confidential way (i.e. where the researcher is in a secured venue) and to store all data securely. Participants could withdraw from the study at any time without any consequences for themselves. The identity of the participants was protected by allocating a code to each participant instead of names.

Nineteen participants took part in this study. Data were collected online via Zoom and WhatsApp. Interviews were conducted only after the participants agreed to take part voluntarily in the study and signed informed consent forms. A semi-structured interview guide focusing on participants' experiences of living with a disability specifically during Covid-19 was utilised to collect the data. The interviews were recorded with the permission of the participants and also transcribed. Interviews lasted 60 to 90 minutes. The data were analysed into themes, as will be presented later (Schurink, Schurink & Fouché, 2021).

During this research extra effort was made to ensure that the study adhered to the additional ethical considerations applicable to conducting research remotely using technology. Qualitative interviews are usually conducted face-to-face (Novick, 2008; Qu & Dumay, 2011). This assists the interviewer to build and maintain rapport with participants (Agar, Aneshensel, Fredrichs, et al., 2003; Gillham, 2005; Hermanowicz, 2002). During face-to-face interviews participants' body language can also add to researchers' understanding (Bryman, 2001; Gillham, 2005). While this research study initially planned to make use of face-to-face interviews, this approach had to be adjusted to adopting methods such as telephonic and online interviews due to lockdown restrictions.

The first relevant factor in conducting remote interviews is the health and well-being of participants and researchers. Researchers should also consider whether asking people to participate in research during this time would put them under any additional unnecessary stress. Once all of these considerations are taken into account, any changes in data-collection methods must be shared with the ethics committee (Jowett, 2020). This was done by resubmitting adjustments to the Research Ethics Committee before conducting the interviews. Most initial contact to discuss the interview process was done through WhatsApp, where the researcher had a profile picture of herself to compensate to some degree for the lack of personal contact during the interview. There were also three interviews conducted through video calling. Should the need have arisen for debriefing, participants would have been referred to a relevant social worker in their area. Three potential independent social workers were identified for the debriefing of participants, where necessary.

Data were verified by ensuring the credibility, authenticity, transferability, dependability and conformability of the study. Regarding the credibility and authenticity of the study, member checks were done with three participants who read through their transcribed interviews to verify that they were a true reflection of the interview. The transferability of the study was supported in the thick descriptions of the data collected. Data saturation was achieved after thirteen interviews, but it was decided to conduct six more interviews to allow for thick descriptions and to enhance the transferability of the study. The dependability of the study was supported by an independent coder ensuring that the themes correlated with the transcribed interviews. Conformability was achieved by reflecting on the research process and also by writing a reflection report. Ethical clearance was obtained for this medium-risk study from Stellenbosch University (Ethical clearance number: 13290).

One evident advantage of remote interviews due to the COVID-19 pandemic was the ability to interview any participant from any area with minimal costs involved. Face-to-face interprovincial interviews would have been costly in terms of travelling, as can be seen from Figure 2 and Table 1.

As can be seen from Figure 2 and Table 1, remote interviews thus allowed for participants to be contacted in different areas within the Western Cape, but also to include participants from Gauteng and KwaZulu-Natal, allowing the research study to be more transferable.

 

RESEARCH FINDINGS

The lockdown restrictions put in place during the pandemic included the limitation of certain services, such as home visits from social workers, and a limitation on the availability of community caregivers or domestic workers, which all provided services and assistance to people with disabilities and their families. Participants in this study (Muller-Kluits, 2020) faced different experiences during the pandemic including social isolation, lack of resources and economic distress.

As can be seen from Table 2, most participants were male. No participant identified as a gender other than male or female. The age of the participants varied between 21 and 59 years of age. Regarding the marital status of participants, it is noteworthy that only a few participants were in a relationship (either partner or spouse). Most of the participants were either single, divorced or widowed. Shakespeare (2018) argues that persons with physical disabilities need a close support system to enable them to cope with the demands of their disability. Most of the participants in this study had to rely on significant others such as other family members and friends to meet their support needs.

Significantly, only two participants acquired their disability as minors, whereas the rest of the participants were adults at the onset of their disability. A small number of participants acquired their disability as a result of a stroke or amputation. Tuberculosis was also the cause of some participants' disabilities. Tuberculosis is regarded as a major health concern in South Africa that has a detrimental effect on the wellbeing of a significant number of South Africans (RSA, 2016). One participant also indicated that his disability was the result of a diving injury. It is noteworthy that several participants acquired their disability as a result of violence such as gunshot wounds or stabbing injuries as well as road accidents. The Institute for Security Studies (2017) indicates that knives and guns are often used in violent crimes in South Africa, which leave many people with physical disabilities. Furthermore, the Department of Transport (2018) states the number of major vehicle crashes resulting in death or serious injuries is disturbingly high in South Africa and is often the result of drivers under the influence of alcohol or drugs.

Regarding employment, most of the participants were unemployed, retired or received a basic income which included the Disability Grant or income from a part-time employment. Employment opportunities for persons with physical disabilities are limited and according to the White Paper on the Rights of Persons with Disabilities (WPRPD) (RSA, 2016), this group should be granted equal opportunities to work as those available to persons without disabilities.

Three themes were derived from the data, namely social isolation, lack of access to resources and economic distress, which will be discussed below.

Theme 1: Social Isolation

In the ecological perspective (Bronfenbrenner, 1979), the meso system refers to interconnections between two or more interactions outside the immediate environment (Wait, Meyer & Loxton, 2005). In this study, extended family, friends and professionals were identified as components of the meso system of adults with an acquired physical disability. Many participants indicated social isolation as a concern because of the lockdown restrictions, as displayed by the following comments (Muller-Kluits, 2020):

I miss the people and being able to go out. (P13)

I miss my clients and friends terribly and... nature, but I stay at home, already disabled, cannot go get a virus or visit someone to get it. (P15)

Previous studies have found there are psychosocial consequences of living with a spinal cord injury (SCI) (Brown, Bell, Maynard, Richardson & Wagner, 1999; North, 1999). Many people may experience reactive depression, which often occurs during the grieving process (such as the loss of a life without a disability) and this is a normal and necessary part of the process as long as it does not continue for too long (Ross & Deverell, 2010). Adapting to these changes can be a significant psychological challenge for some individuals, leading to depression and anxiety, fear of rejection by partners or peers, poor coping skills, and a struggle with self-identity (Carpenter, 1994; Craig, Hancock & Dickson, 1999; Levins, Redenbach & Dyck, 2004). Disability is often experienced through isolation and exclusion from full participation in society, often caused by societal barriers (Forber-Pratt & Aragon, 2013; Shakespeare, 2018), environmental factors and economic barriers (Union of the Physically Impaired Against Segregation, 1976). Social isolation also made feelings of depression resurface for one participant (Wait, et al., 2005):

That first week and a half hit me very hard. I was very sad. I was very lonely. It was terrible for me... I am in a wheelchair and I live on my own. It makes it so much more difficult. I cannot just walk out quickly and move around outside. One just realises again... where you sit alone at home with no other distraction. Then you get sad again because you realise you are paralysed. Then I can also understand one must be careful of depression for people that are on their own. (P14)

Depression has been described as "anger turned inward" towards oneself (Moses, 1985:38). Mobility such as driving a car can prevent involuntary isolation and facilitate participation in work, education and social life for people with disabilities (Hendriksson & Peters, 2009). A participant explained how they are conflicted between wanting to be outside and adhering to safety regulations during the pandemic (Wait et al., 2005):

End of May then the walls started to press on me I must get out. I took my wheelchair and drove early in the morning when the President announced we could walk. It was lovely. I miss my clients and friends terribly and. nature, but I stay at home, am already disabled, and cannot go get a virus or visit someone to get it. (P15)

From these comments, the importance of access to a support network was evident to assist with inclusion and minimising feelings of depression. The restrictions within lockdown meant less social contact and therefore led to feelings of social isolation and consequently feelings of depression for some participants. Pillay and Barnes (2020) also found in their study that the pandemic had a tremendous impact on people's mental health, especially in terms of the spread of fear and panic globally. This was also highlighted by Ned et al. (2020), as they explored specific fears experienced by persons with disabilities during the pandemic. This included fear of being isolated.

Theme 2: Lack of access to resources

As time passed during the pandemic, some adjustments to lockdown restrictions were made to ensure that service delivery could continue, for example social workers were able to make telephonic contact with service providers and later, as the restrictions were gradually lifted, office visits were possible. These adjustments, however, also came with challenges (i.e., clients not having phones or finances to afford office visits), which hindered accessible service delivery to adults with an acquired physical disability. Participants also indicated that there was some level of caregiver burden on their families and, for those living alone who were used to receiving assistance from a caregiver, there were significant challenges in terms of daily functioning. One participant also mentioned that they used to have a helper who could not, at the time of the interview, come to assist them with housework which, apart from the isolation, caused extra strain on daily functioning.

Before lockdown, I had a helper who came in twice a week and she would clean the whole house and hang up the clothes and iron. (P14)

Participants also indicated the lack of public transport for people with disabilities, especially for those using a wheelchair. This need was exacerbated during COVID-19 restrictions as it decreased the number of passengers allowed per public transport vehicle due to social distance regulations.

Yes, it's the transport... because you want to do something... you need transport. (P11)

The COVID-19 global pandemic emphasised once again the importance of providing accessible support services according to Article 11 of the UNCRPD (International Disability Alliance, 2020) The pandemic also called for the WPRPD to be formally adopted in legislation to protect people with disabilities (Western Cape Forum for Intellectual Disability, 2020). Along with social isolation, unresponsive services and inadequate systems, poverty is one of the major factors that contributes to dependency and disempowerment among people with disabilities (RSA, 2016).

Closely related to the lack of access to resources is the lack of support of family members. One participant indicated that this was especially challenging during lockdown, when she could not rely on outside support to assist her.

The support of family is not the same anymore, as in the beginning how it was. And that is just like the social worker at the rehab told me that people are inclined to want to be a helping hand at the beginning or to support and then. later. it fades. And that is really the truth. for some, I can still rely on to do things for me, whereas others have to be begged... and during the lockdown, it is especially hard as I cannot rely on outside support. (P10)

Significantly, the lack of resources and support was aggravated during the lockdown; vulnerable groups such as persons with disabilities (World Health Organization, 2020) were not only regarded as a high-risk group regarding their physical health, but also regarding their overall well-being and mental health. The economic challenges during the lockdown posed a further challenge to persons with physical disabilities, as will be indicated below. Another South African study (McKinney et al., 2020a) also noted the impact of COVID-19 and the social isolation that affected persons with disabilities with regard to their access to services, especially in terms of access to health care and support.

Theme 3: Economic distress

Graham, Moodley, Ismail, Munsaka and Ross (2014) indicated that 51% of people with disabilities in South Africa make use of social grants as a source of income, but even with this assistance, 69% of people with disabilities in 2014 lived below the poverty line (less than R502 (US$52.84) per month).

Besides the health impact of the COVID-19 virus, the economic impact was also evident. Some countries, including South Africa, implemented unprecedentedly extreme measures, including nationwide limitations of movement and social distancing in attempting to minimise the spread of COVID-19. Despite some relief during the lockdown regulations in South Africa, at the time of the study these regulations had already been in place for more than 120 days. This had a tremendous impact on many sectors, leading to socio-economic crises also affecting people with disabilities, such as intensified poverty as they were unable to work (Muller-Kluits, 2020).

These globally enforced lockdowns in different countries are considered to have caused the worst economic downturn since the Great Depression (International Monetary Fund, 2020). Millions of people lost income streams, as many sectors were restricted in their everyday functioning, which exacerbated prior inequalities (International Labour Organization, 2020). Participants in this study expressed concern about poverty in terms of the economic impact of the lockdown regulations, as certain sectors were not able to work, affecting people's employment and consequently income, as indicated by the following comments (Wait et al., 2005).

I have learned a lot of things, but also worried about those who are facing poverty. (P05)

I think to try and keep my career going was a big challenge. With that, I also had to work a bit, but it was actually a nice challenge... So currently I can sit at home and work a bit on my music. I don't make money and that is the biggest challenge. Finances remain a challenge. (P19)

Poverty and economic inclusion have been focal points in many policies. The WPRPD emphasises that, under Pillar 4, the focus areas that aim to strengthen economic independence and a dignified life for people with disabilities through empowerment include social integration support, access to lifestyle support, supported decision-making, and strengthening recourse mechanisms (RSA, 2016). Some participants indicated their frustrations at a lack of money to cater for their basic needs. Although these comments did not specifically focus on further challenges during the lockdown, most participants indicated that the lockdown complicated the economic distress already experienced.

Now I am bitter again, hate, and anger because I don't have money to cater for my needs. (P11)

And things in a wheelchair are expensive. If you break something in a wheelchair, it is always expensive. So it remains a frustration if something goes wrong. (P13)

The grant money is too little. (P17)

I didn 't have the finances to have a full-time nurse so... it was really very complicated to adjust to the conditions at home. (P09)

Not yet, but since I stayed with my boyfriend from 2016 until now I only start this year to be not working, so that gives me a problem because I'm not used to asking for everything from my boyfriend... I have to ask him money for pads, I didn't use to do that. (P03)

From the above comments it is clear that most of the participants experienced financial challenges and that COVID-19 worsened the situation (McKinney et al., 2020b). The World Report on Disability made some recommendations on how to improve service delivery to people with disabilities. These recommendations involve the inclusion of people with disabilities to enable them to make a decent living, the promotion of micro-enterprises and self-employment for people with disabilities, the improvement of access to microfinance for people with disabilities through better outreach, accessible information and customised credit conditions, and finally, letting labour unions make disability issues such as reasonable accommodations part of their bargaining agendas (World Health Organization and World Bank, 2011).

 

DISCUSSION

Within the South African context, various initiatives were put into place during the pandemic while its lockdown regulations were extended. These initiatives were aligned with healthcare strategies to support vulnerable groups (including people with disabilities) as well as address economic dilemmas.

Firstly, as a legal response, the South African government adopted and reinforced the implementation of the Disaster Management Act 57 of 2002. The Government Communication and Information System was used to mobilise the national response to reach all people within South Africa's boundaries. Reporting lines were to National Joint Operational and Intelligence Structure and the National Coronavirus Command Council. South Africa's Covid-19 communications strategy was designed for the provision of information, the promotion of behavioural change, and to increase awareness and compliance. A Crisis Communication Plan was developed, and the Department of Health was tasked with ensuring that the communications from the government would be coherent, credible and reliable. The Government Communication and Information System was responsible for ensuring the coherence of the communications strategy filtering from the national to the district, municipal, local and rural levels. Within the health sector, the response was coordinated through the Incident Management Team, with expert advice from the Ministerial Advisory Committees, and involved multiple outbreak response committees. The education sector had to make unprecedented policy decisions at the onset of the pandemic and lockdown about the closure of educational facilities and then later implement online home-schooling. This created many challenges for families trying to navigate curriculum and it also highlighted the digital divide within the country as access to data and devices become crucial for online learning (Vogel et al., 2021).

The South African economy was influenced in many ways by the pandemic as different regulations were implemented for different sectors. This was mainly driven by the determination of whether services were deemed essential to minimise contact between people and limit the spread of the disease. Some of the economic responses put into place as the pandemic regulations continued included fiscal and monetary measures in terms of funding for public health and related interventions, measures to ease the economic distress from the national lockdown, as well as social support initiatives to prevent hunger and ensure food security. (Vogel et al., 2021). Despite this, participants in this study still experienced the economic distress of the pandemic. In many low- and middle-income countries, such as South Africa, work within the informal sector (such as street vending, mini-bus taxi driving, artisanship and domestic assistance) is often physical, limiting its ability to be integrated within the digital economy (Barton, 2018). Social isolation therefore could not have been practised equally amongst everyone in society as for some the economic impact was more severe than for others (Boot et al., 2020). Participants in this study were mostly unemployed, entrepreneurs or worked in a part-time position which, as the narratives indicate, resulted in many of them also being affected by these restrictions.

Water and sanitation infrastructure is crucial for the health of a society, especially during a public health crisis such as the Covid-19-pandemic. Limited access and poor quality of water, sanitation and hygiene infrastructure present risks to vulnerable groups, including people with disabilities, in both rural and urban areas. Despite the government's measures to provide emergency supplies to water-stressed communities and schools, it still did not address the infrastructure investment backlogs, coverage gaps and inequalities that were present. The need for the use of information and communications technology infrastructure and services increased as the lockdown and social distancing required people to conduct their business in different ways. As in the education sector, the pandemic highlighted information and communications technology's enabling role as well as gaps in coverage and access (Vogel et al., 2021). The Department of Social Development as well as civil society organisations were actively involved in the distribution of food parcels. However, organisations were also constrained by bureaucratic practices requiring that an application to distribute parcels be completed 48 hours before the delivery of such support services. Eleven shelters were provided in the Northern Cape and KwaZulu-Natal for those in need, whilst the Western Cape government partnered with existing shelter networks to identify vacant plots for setting up shelters.

Participants in this study indicated a lack of different resources, including health care and information.

Coetzee and Kagee (2020) argue that the COVID-19 pandemic aggravated the already existing social inequality as lockdown regulations identified disparities in resources and economic circumstances. Their findings align with this study and other studies referred to earlier in highlighting the vulnerability of people with disabilities as persons who often already face disparities in social inclusion and participation but now were faced with more challenges in terms of accessing different resources.

 

CONCLUSIONS AND RECOMMENDATIONS

Even though the pandemic was not an experience that would be considered a regular occurrence, its existence during the time of this study indicated a need to reflect on the lack of social support, especially for people with disabilities as well as the role of social work during a pandemic (or similar disaster situations).

The limitations on service delivery that were implemented during the pandemic revealed the need to develop contingency plans for such disaster situations within the social work profession, especially for vulnerable groups such as people with disabilities. Reflecting on the pandemic enables organisations, governmental structures and other stakeholders engaged in service delivery to people with disabilities to identify the challenges experienced and to develop service plans that would, at least to some extent, overcome these challenges. It is recommended that these discussions take place to develop contingency plans for possible future disaster situations, such as pandemics or even natural disasters. As South Africa faces another state of disaster with electricity load shedding or "black outs" (Businesstech, 2023), the lessons learned from experiences during the pandemic could help to understand the needs of persons with disabilities. These considerations could include access and efficiency of assistive technology during load shedding in low socio-economic communities to persons with disabilities and their families.

One participant (P14) from this study recommended that organisations should make communities aware of the services available and make constant contact. Another participant (P19) explained how there seems to be a general lack of understanding of what is needed in terms of accessibility for disabled people, and various other participants echoed this by recommending the involvement of people with disabilities in addressing the restrictions to participation within communities. A 'bottom-up' approach in planning service delivery and policies for people with disabilities was recommended by people with disabilities themselves during this study. This was also a recommendation in the study by Ned et al. (2020). This approach would allow for increased participation of people with disabilities, and for them to be able to benefit from continuous (in this case, telephonic or online) contact to address social isolation during pandemic restrictions.

During the pandemic, social support services were also constrained by the lockdown and social distancing requirements. Lines for those needing support, e.g. food parcels, were long, suggestingthat in the early stages of the pandemic government capacity was a constraint on social relief (Vogel et al., 2021). Social work is often underrepresented within health-related discussions, such as service delivery to people with disabilities. This also seemed to be the case with strategic service plans during the pandemic, as there were limitations on social work service delivery whilst other essential care services continued, although social workers became more actively involved in delivering social support as the pandemic and its consequent regulations continued.

It is suggested that a comprehensive contingency plan could be set up within the social work profession to ensure that social workers are also included in service planning for vulnerable groups such as people with disabilities during state of disaster circumstances, whilst still ensuring their personal safety with the necessary precautions and personal protective equipment. The valuable expertise and skills of the profession in advocating the needs of vulnerable groups, such as persons with disability, across micro to macro levels need to be advocated for more effectively in different environments to address this. They contributed in assisting with social relief measures such as food security and shelter. Furthermore, their advocacy for support to counter gender-based violence as an essential service to be continued (Vogel et al., 2021) assisted with the burden of disease experienced by the health sector.

During this study, certain limitations are of consideration:

• This study had a small sample size of participants, which means that the sample was a small representation of the research universe. As a result, generalised assumptions about the findings of the study cannot be made;

• The COVID-19 pandemic did not allow for face-to-face interviews, and the research study had to be redesigned to be done remotely using technology. This inhibited the ability to gather non-verbal information such as body language from the interviews;

• Conducting interviews by using technology rather than doing them face-to-face raised distinct ethical considerations;

• Some sources were dated, but the inclusion of other more recent sources compensated for dated sources.

• All consent forms could not be signed physically because participants not did have the resources themselves to print, scan and send them back to the researcher. Many participants thus opted to verbally acknowledge receipt and consent for the research study.

Despite these limitations the experiences of the participants during the state of disaster, global pandemic, brings forth lessons and reflections for consideration for any future similar circumstances that may occur. This will help to ensure persons with disabilities and their families have equal access and participation according to the WPRPD.

 

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Article accepted: 16 June 2023