The realisation of the right to health of persons with disabilities in the COVID-19 era: Evaluating South Africa’s (non) inclusive response

1 Introduction

Global statistics indicate that over 1 billion people or 15 per cent of the World’s population have some form of disability.1Approximately 80 per cent of these people are in developing countries.2 In South Africa, there are approximately 2.8 million persons with disabilities (PWDs), accounting for about 7.4 per cent of the entire population.3 This excludes PWDs who are institutionalised and children with disabilities under 5 years of age.4 According to the Community Survey 2016, PWDs suffer social inequalities whereby 36 per cent are of low socio-economic status.5 In terms of race desegregation, the PWDs in the white or Indian/Asian population are within the upper wealth quintile (86.8 per cent and 71.9 per cent respectively). The Black African PWDs represent 44.7 per cent in the lower quintile in comparison to the less than 5 per cent among the coloured, Indian/Asian and white population groups. There is a need to establish the desegregation during the Covid-19 pandemic to establish the numbers of PWDS based on age, race and gender. At the time of preparing this contribution, the authors were not aware of any detailed desegregation following the 2016 study.

From the outset, ‘disability’ has often been understood as a physical notion, coupled with a modesty that extends to mental contexts.6 For the purposes of this presentation, disability should be looked at in a wider perspective that covers physical, intellectual or sensory impairment, medical conditions or mental illness, which may be permanent or transitory.7 While it is recognised that the Convention on the Rights of Persons with Disabilities (CRPD) avoids a definition of disability or PWDs, this paper adopts the position of the Protocol to the Africa Charter on the Rights of Persons with Disabilities, which describes a person with disabilities to include

those who have physical, mental, psycho-social, intellectual, neurological, developmental or other sensory impairments which in interaction with environmental, attitudinal or other barriers hinder their full and effective participation in society on an equal basis with others.8

This definition is broad enough to cover various aspects that go beyond the usual and narrow concepts of physical and mental disabilities. In this vein, several international and regional human rights instruments guarantee the right to health of individuals. Various international human rights instruments have thematically dealt with the issues of disabilities. These include the Convention on the Rights of the Child,9 the African Charter on Human and Peoples’ Rights,10 the African Charter on the Rights and Welfare of the Child,11 the Additional Protocol to the American Convention on Human Rights in the Area of Economic, Social and Cultural Rights,12 the Protocol to the African Charter on Human and Peoples' Rights on the Rights of Persons with Disabilities in Africa,13 and the CRPD.14 This has greatly informed the informed the widely accepted belief that the rights of PWDs must be protected and promoted through general, as well as specially designed, laws, policies and programmes.15 South Africa is a party to most of these instruments and as such is bound to engage its obligations to the letter.16

This contribution argues that the outbreak of the COVID-19 pandemic in South Africa and the subsequent national lockdown has led to the questioning of the national responses in the context of the right to the health of PWDs. Following the statement of the problem and the setting of the scene regarding the rights of PWDs, the contribution discusses the extent of the government’s inclusion or participation of organisations that (especially) represent the interests of PWDs in the response plans. This is followed by a discussion of the accessibility of information for PWDs, and accessibility to healthcare and other essential services. A conclusion and recommendations follow.

2 Statement of the problem

Despite the high figures of PWDs in South Africa, there is a missing link in the desegregation of the persons affected by COVID-19. The disconnect is that the COVID-19 statistics in South Africa are silent on desegregation on account of race, age, sex and forms of disabilities of infected PWDs. This missing link has affected the responses by the government to PWDs. With an emphasis on the right to healthcare, this disconnect identifies the need to question the responses by the government to ensure the enjoyment of the right to health of PWDs during the pandemic. It offers a chance to question the practical aspects of the regulations in relation to the health of PWDs.

It should be noted that the Committee on the Rights of Persons with Disabilities (the Committee) has expressed concerns about the 2018 report of South Africa. In this regard, the Committee highlighted the absence of meaningful consultation and effective participation mechanisms to ensure that the views, opinions and concerns of PWDs are engaged in policy formulation, including decision-making processes, by public authorities both at the national and local levels.17 As indicated earlier, a holistic description of PWDs (that includes persons with physical, mental, psycho-social, intellectual, neurological, developmental or other sensory impairments which in interaction with environmental, attitudinal or other barriers hinder their full and effective participation in society on an equal basis with others) has to be used.

3 Setting the scene: The right to health of PWDs

The realisation of the right to health is informed by the extent to which the requisite services are available, accessible, acceptable and of good quality.18 Without prejudice to these four elements that inform the right to health generally, the context of PWDs is informed by eight major principles underlying the Convention on the Rights of Persons with Disabilities (CRPD) and implementation of obligations within a state.19 These include the respect for inherent dignity; the principle of non-discrimination; participation and inclusion in society; respect for difference; and acceptance of PWDs.20 Other principles include equality of opportunity; accessibility; equality between men and women; and the respect for the evolving capacities of children with disabilities and their right to the preservation of their identities.21

This contribution by design examines three principles, namely: accessibility; equality and non-discrimination; and participation of PWDs in matters that concern them. While the selected principles inform the holistic enjoyment of the right to health of PWDs,22 it is reiterated that this is by no means an exhaustive list but rather furtherance of the discussion herein.

4 Contextualising the COVID-19 pandemic

The origins and chronology of the outbreak of the COVID-19 pandemic are well-documented and need not be repeated here.93 Since then, this virus has spread to 219 countries, affected over 167 million people and resulted in over 3.4 million deaths.94 At the time of writing, the United States had reported close to 33 million cases and over 587 000 deaths, while India reported 27 million infections and over 300 000 fatalities.95 South Africa had 1.6 million positively confirmed cases and over 55 000 deaths.96 The greatest fear is in the steps that have to be taken to engage the third wave. It should be noted that the desegregation of these figures does not show the extent to which PWDs are affected. This anomaly is extended to data that is not desegregated based on age, sex or race. While the authors are alive to the critical positioning of these elements, it is argued that the best way to plan for the effected persons is to soar above these elements and seek to engage with how to best help the affected individuals.

In consonance with other countries, South Africa imposed lockdowns to ensure social distancing. Its lockdown restrictions have been gradually eased through a five-level tier system under the regulations promulgated under the Disaster Management Act.97 It is not in doubt that various rights like the right to movement and accessibility of services like health and education have been greatly affected. The right to life in the context of ensuring livelihood, human dignity, health and education has also been curtailed.98 The state remains obliged to promote and protect the rights of people within its territories to ensure the continued enjoyment of their rights like health, education, housing, and food and nutrition.99

In a joint statement, the UN Committee on the Rights of Persons with Disabilities advised states on how to protect the rights of PWDs.100 It called on states parties to take all possible measures to ensure the protection and safety of PWDs in the national response to situations of risk and humanitarian emergencies.101 The measures have to speak to the protection of their access to the highest attainable standard of health without discrimination, general wellbeing and prevention of infectious diseases, and to protect against negative attitudes, isolation, and stigmatisation that may arise during the crisis.102 Furthermore, the Committee advised on the use of the SDG 2030 Agenda to safeguard the rights and well-being of persons with disabilities.103 States are called on further to accelerate measures of deinstitutionalisation of PWDs from all types of institutions104 and to adopt measures to appropriately respond to the COVID-19 pandemic, through inclusion and the effective participation of PWDs.105 These measures are also corroborated by a report by the International Commission for Jurists, which states that while persons with disabilities encounter different challenges relating to the enjoyment of the right to health, the situation is compounded by the outbreak of COVID 19 pandemic.106 The UN Special Rapporteur on the Rights of Persons with Disabilities has noted that:

Owing to high levels of poverty, discrimination, violence and social exclusion, as well as significant barriers in access to health-care services, persons with disabilities, are at higher risk of developing ill-health than the general population and, therefore, more likely to require and use health-care services.107

The Committee on CRPD has affirmed the obligations of states to ensure the right to equality and non-discrimination in the enjoyment of healthcare services for PWDs.108 The Committee on Economic, Social and Cultural Rights has noted that PWDs must be provided the same level of medical care within the same system as other members of society.109

To this end, the question to which the paper now turns is to what extent the national responses speak to the protection of PWDs. In a bid to evaluate their access to the highest attainable standard of health, and to protect against negative attitudes, isolation, and stigmatisation, the three principles of accessibility, equality and non-discrimination and participation will be engaged.

5 The extent of the government’s inclusion or participation of organisations

The concept of inclusion is birthed out of the Sustainable Development Goals that are informed by the aphorism ‘leaving no one behind’.110 Various specific developments have taken place since then. For instance, the United Nations proposed that all the preparedness and responses of states have to be inclusive of and accessible to all persons including women with disabilities and include accessibility for all persons, including women with disabilities.111

Following the adoption of the COVID-19 Regulations under the Disaster Management Act, the Department of Social Development adopted measures to cushion the effects of COVID-19 on vulnerable persons. Regarding PWDs, measures were introduced to support them by allowing caregivers to continue assisting them to do their shopping and to access their social grants.112 It should be noted that this relief was evident in regulations and the authors are not aware of any other specific or thematic regulations that have been made under the Disaster Management Act to deal with specific aspects of PWDs. This is the identification of the lack of inclusion that follows the lack of participation of the PWDs or their organisations in the enactment of the regulations concerning the COVID-19 era. Involving marginalised and disadvantaged groups in decision-making in matters that affect their lives is not only empowering but also upholds their dignity.113

Participation has been a contested issue that has continually come up in courts of law. In the Doctors for Life International, the Constitutional Court held that concerning participation in the enactment of legislation, Parliament and the National Council of Provinces have to ensure that provincial interests are taken into consideration in the national law-making process through the facilitation of public involvement as long as it is reasonable to do so.114 It was indeed unreasonable to conduct in-depth facilitation during the lockdown.115 The Court added that the participation by the public continuously provides vitality to the functioning of representative democracy through the encouragement of citizen in the country to be actively involved in public affairs.116 It should be recalled, however, that the government was able to put in place a team to advise the presidency on the COVID-19 pandemic, after the declaration of the state of disaster and the adoption of the various regulations. Surely, it did not need much effort to add organisations representing PWDs. The establishment of the National Command Council to influence decisions on the regulations adopted to mitigate the spread of COVID-19 should have engaged organisations of PWDs to ensure a certain iota of participation.117

The extent of consultation or public participation by the Minister of Cooperatives and Traditional Affairs before handing down the regulations under the Disaster Management Act under the DMA was greatly limited. In De Beer, the Court noted that the making of regulations and the issuing of directives by the Minister in terms of the DMA are subject to a specific limitation-enactment after consultation with ‘the responsible Cabinet member’, responsible for each specific functional area of jurisdiction.118 The making of the regulations are informed by the need to take necessary measures to assist and protect the public, provide relief to the public, and protect property.119 There was no participation of the masses let alone PWDs or institutions that support this cause.120 The only logical aspect of the regulations that speaks to the plight of persons with disabilities indicates that the major and outstanding reference to them related to the provision of the social and disability grant which would continually be paid.121 Other than this aspect (which was not informed by participation), there are no direct thematic regulations that are adopted to particularly deal with the challenges of persons with disabilities. The danger in this lack of engagement continues to prevent the country from obtaining logical answers to pressing problems like gender-based violence involving PWDs and CWDs. In this regard, the UN Special Rapporteur on extreme poverty and human rights has noted:

[T]he main aim of human rights is transforming power dynamics between individuals in society, in order to challenge oppression, subvert the subordination and marginalization of certain groups and individuals, and promote individual agency, autonomy and respect of the inherent dignity of every human being. 122

The lack of a counter-intuitive approach was evident in the non-recognition of the evolving capacities of children who would have communicated their views on how to be helped in the era of COVID-19. One may also argue that it was a missed opportunity at obtaining clarity for PWDs from specific organisations.

As noted earlier, accessibility to the physical environment, transportation, information and communication and to other facilities and services aids PWDs to live independently and participate fully and equally in society.123 It is not in doubt that most public health centres and hospitals provide for access for PWDs. Global results by the COVID-19 Disability Rights Monitors states that this accessibility is greatly limited to urban hospitals. It is stated that accessible transport is limited especially from rural areas to hospitals and clinics.124 In areas where there is accessibility success, it is devoid of access concerning the provision of quality services for persons with emotional disabilities.125 Furthermore, earlier research that was carried out before the lockdown indicates that access to healthcare in rural areas starts as a barrier to persons without disabilities, before the narrative of their effect on PWDs.126

In the context of the right to health, South Africa has recognised in its Voluntary National Review Report that the main challenges are the lack of access to healthcare, especially in rural areas.127 With specific reference to the right to health, there is a limitation in terms of enjoying healthcare from care providers.

6 Accessibility of information for PWDs

As indicated earlier, there is no desegregated data on the numbers of PWDs who have been affected by COVID-19 in South Africa. This makes it a problem as far as one does not know the magnitude of the support that is required by this vulnerable group. As a result, the greatest challenge lies in the lack of information that can be disseminated. It should be noted that access to information constitutes an integral part of the right to health. Without proper information, people in general and PWDs in particular may not be able to protect themselves. Access to information is greatly tilted to persons with specific disabilities. It is argued that a person who can read sign language is among the few PWDs who may benefit from information from the state. This has been a crucial aspect of the dissemination of information. However, the United Nations state that only 28 per cent of PWDs globally have access to benefits.128 To this end, a study in South Africa shows that rehabilitation services, like physiotherapy, occupational therapy, speech therapy and hearing therapy were only available to 28 per cent of the PWDs.129 Desegregation of the forms of disability in South Africa includes sight, hearing, communication, physical and mental disability as well as difficulty in self-care.130 As such attempts to deal with disabilities have to speak to all these categories. In this regard, the African Disability Protocol urges states to ensure access to information for PWDs by: ‘Ensuring that persons with visual impairments or with other print disabilities have effective access to published works including by using information and communication technologies’.131 As illustrated by the Eldridge case, the state is obligated to ensure access to health-related information to PWDs to enable them to enjoy their right to health.

7 Accessibility of healthcare and other essential services

Statistics show 6 per cent of PWDs in South Africa lack access to healthcare facilities;132 30 per cent of students with disabilities report that schools are not accessible; and 17 per cent of women with disabilities have experienced violence because of their disabilities.133 The closest that the government has come concerning the provision of support has been through the adoption of particular COVID-19 policy responses to guide healthcare workers. The policy documents of accessibility to healthcare do not engage the position of PWDs, and secondly, they take on a medial rather than a human-rights based approach.134 While the former focuses on treatment following a medical condition, the human rights-based approach uses human rights standards to realise the rights of an individual.135 It is premised on the notion that every individual must be treated with respect.136 This approach emphasises the safeguard of the interests of marginalised and disadvantaged groups in society through respect for dignity, non-discrimination and equality, participation, accountability, access to information and transparency. 137

To this end, under the National Infection Prevention and Control Strategic Framework,138 health workers are guided on how to ensure patient safety through the use of the built-in environments, water, sanitation, environmental cleaning and healthcare waste management.139 While this is commendable, it only speaks to help the patients who are in the healthcare setting, there is no regard to those who are in other settings like in their home or in institutions where the persons who care for them are expected to provide the same or higher level of support.

Furthermore, there is a lack of emphasis on the extent of support that is deliberately channelled to PWDs. If anything, the document mentions PWDs once - namely, the need to have at least one toilet for PWDs.140 As such, while this information albeit insufficient is available for the healthcare workers, it is not provided for PWDs to place them in a position to know their rights and be able to enforce them. It is argued that this omission rather exacerbates an institutionalised model of discrimination that is seen in the silence of the national response mechanism on the guidance to health workers and the reiteration of the rights of PWDs.

Another critical response mechanism is the Allocation of Scarce Critical Care Resources during the COVID-19 Public Health Emergency in South Africa.141 This resource provides for the guide the triage of critically ill patients if a public health emergency creates demand for critical care resources like ventilators and critical care beds.142 This is a welcome development and critical to the provision of healthcare to the critically ill, including PWDs. As mentioned earlier, this is informed by the perspective that a person has to be critically ill to benefit from scarce critical care resources. The rhetorical questions that come to the fore are: what about the use of preventive measures that culminate in a possible avoidance of this problem? What about the deliberate use of the scarce resources for the provision of support to the PWDs in their various settings, and above all, to what extent is this information available to them? The heightened danger in the application of this response mechanism lies in the health decisions that are based on discrimination informed by aspects such as age and the value of life. To this end, the use of the clinical Frailty Scale to determine who gets support may effectively limit support to PWDs.143 None of these documents speaks directly to disability. Accessibility speaks to the availability of collected data and how its dissemination presents barriers that affect PWDs. The unpacking of accessibility to health services is informed by the extent to which PWDs have received treatment.

8 Conclusion

The paper has highlighted some of the challenges facing PWDs in the realisation of their right to health during the COVID-19 pandemic. First, the preparation of the Declaration and the Regulations under the Disaster Management Act are limited to specific ministerial powers. This is because the intent is to control the emergency for a limited period. This position greatly influenced the extent to which any form of participation would be engaged. There has been no inclusion of participation of organisations of PWDs in the adoption of measures. In instances where there has been inclusion and participation, it is not readily available. The available measures to provide information and services reveal the use of a rather medical-oriented approach that engages in treatment rather than a human rights-based approach that takes on preventive, promotional and protective measures.

The accessibility of information for PWDs, and subsequent access to healthcare and other essential services is limited to specific calibres of PWDS. While some of the support provided like the social and the temporary disability grants is crucial, a deliberate participatory approach needs to be adopted. Matters of discrimination based on decisions that follow who should receive treatment continue to trickle in, exacerbating the already vulnerable position of the PWDs. The failure to engage the PWDs or the institutions that support their cause shows a lack of inclusive engagement, a lack of participation. This greatly affects the accessibility of information and services.

It is highly probable that the data on the COVID-19 infections has details on the age, sex, race and forms of disability, though the non-disclosure of the same is informed by other reasons. Nevertheless, it is imperative that this information is given to offer a clear picture of the effect on COVID-19 on the PWDs. The interventions by government have to be in tandem with the figures on the desegregation of PWDs so as to ensure participation and the desired accessibility of information and services. It is proposed that a multi-disciplinary empirical study that tests this conceptual framework against human-rights based theories be done to test the argument and sub-claims in a qualitative or quantitative study.

A re-evaluation of the process of adopting regulations for periods of emergencies should be revisited to inculcate a human rights-based approach as the mode of protecting the rights of PWDs. Concerning shadow or alternate reports by NGOs to the Committee of the RPD, this should be submitted to evaluate the extent to which SA as a state party has engaged the protection of PWDs in the COVID-19 pandemic.