Access to healthcare for people with disabilities in South Africa: Bad at any time, worse during COVID-19?

People with disabilities, especially those living in low- and middle-income countries, experience significant challenges in accessing healthcare services and support. At times of disasters and emergencies, people with disabilities are further marginalised and excluded. During the coronavirus disease 2019 (COVID-19) pandemic, many people with disabilities are unable to access healthcare facilities, receive therapeutic interventions or rehabilitation, or gain access to medication. Of those who are able to access facilities, many experience challenges, and at times direct discrimination, accessing life-saving treatment such as intensive care unit admission and ventilator support. In addition, research has shown that people with disabilities are at higher risk of contracting the virus because of factors that include the need for interpersonal caregivers and living in residential facilities. We explore some of the challenges that people with disabilities residing in South Africa currently experience in relation to accessing healthcare facilities.

the virus. 4 Many have also experienced struggle and direct discrimination in accessing life-saving treatment such as ICU admission and ventilator support. 4,17 These issues, which have placed people with disabilities at higher risk of contracting the COVID-19 virus during the current pandemic, 17,18 are explored in depth in this article in both international and local contexts.

Transport
A lack of accessible transportation is a significant barrier in accessing healthcare services for people with disabilities in South Africa. 3,16 Railway networks are not accessible to wheelchair users, no assistance is provided to assist disabled passengers in accessing and using trains, 19 and disabled passengers feel vulnerable because of safety concerns. 7,20 In addition, there are no telecoil (TTY) facilities available for passengers using hearing aids, and many stations have poor signage and unclear loudspeaker systems.
The informal minibus taxi industry is the main provider of public transport in South Africa because of its availability and affordability. 21 However, people with disabilities experience many challenges, including lack of assistance getting into and out of a taxi, being required to lift and carry their own wheelchairs on board, being charged an extra fare for their wheelchairs and concerns surrounding safety. 8,12,16 A female wheelchair user said, in the context of COVID-19 22  During national lockdown Level 1 and Level 2, public transport was significantly reduced in order to assist in containing the spread of the virus. Public train services were suspended, a limited number of buses were permitted and minibus taxis were permitted to operate at limited capacity for limited hours. Transport was permitted for health workers and other workers employed in essential businesses and services, and people requiring essentials including food, medication and social grants.
Travel time limits were too restrictive for many people with disabilities who, as a result of their impairments and reliance on assistance from others, required a longer time to complete their morning hygiene routine, travel to purchase food and medical supplies and return home.
The limited public transportation severely affected the ability of caregivers to travel to assist people with disabilities. There was a lack of state communication, particularly from Department of Women, Children and Persons with Disabilities, the department responsible for supporting people with disabilities, regarding how, and from whom, permission could be obtained for caregivers to travel during lockdown.

Personal assistance and caregivers
People with disabilities (and their families) carried a deep and constant fear that their caregivers may become sick and/ or need to be quarantined. 23,24 Unlike high-income countries where caregivers are paid for or procured via government structures and agencies, South Africans with disabilities are required to pay privately for caregivers or use their R1890 state disability grant for this purpose. There are very few structures and training providers such as carer agencies that provide qualified and trained substitute caregivers. As a result, the vast majority of caregivers have limited or no medical or healthcare training. Even if replacement caregivers were available, they would require training, and a careful handover, which would not be possible if immediate quarantine of regular caregivers was required. 24 In the majority of cases, caregivers travel on public transport and interact with others at home, socially and whilst shopping when not on duty. Thus, COVID-19 testing is required before each shift change. 25 The current cost of a single private COVID-19 test with 3-day return of result is R850, approximately half of the monthly disability grant and is beyond the reach of most South Africans with disabilities. Furthermore, private COVID-19 testing for caregivers is not covered by medical aid schemes of people with disabilities.
For some people with mental health conditions, loneliness and social isolation from caregivers has had a significant negative impact on their emotional and psychological wellbeing. It has been reported that the potential isolation from caregivers who assist with medication adherence, together with reduced accessibility to mental health services could lead to relapse. 26 For one of the authors of this article, who has high-level quadriplegia, the reliance on carers and associated risks of contracting the virus from them is significantly high because of the nature of his disability and need for constant personal and intimate care. Not only is this extremely anxiety provoking, but because the author is unable to cough, contracting COVID-19 would most likely be fatal. His caregivers previously worked alternate shifts; however, in consultation with the caregivers, shifts have now been extended to one month to reduce the number of shift changes, travel time and costs involved. Not only is this physically and emotionally challenging, but COVID-19 has brought about additional and unbudgeted expenses. Furthermore, the author fears being admitted to hospital without his caregiver, as healthcare workers in hospitals may not have the skills, experience, training or time to provide him with the same necessary personal attention.

Communication challenges
Current healthcare policy dictates that patients may not be accompanied by friends or family when accessing healthcare, which is a sensible prescription in general, but represents a significant obstacle for a number of people with disabilities.
http://www.safpj.co.za Open Access Many people who are deaf use sign language as their primary means of communication, and are unable to converse with healthcare workers without interpreters. 27,28 For those who rely on lip reading, as the first author does, understanding healthcare workers wearing N95 and surgical masks is impossible. Furthermore, providing a patient history, or having to sign consent may be a significant obstacle, at times impossible for someone with severe intellectual or psychosocial disabilities, or on the autistic spectrum.
Information about COVID-19, how it is transmitted and prevention measures to be taken, has been released by the South African government across all media including television, radio and newspapers. However, not all of this information has been published in accessible formats, such as Braille, required by some people with disabilities. 4 Additionally, only a few national broadcasts utilise sign language interpreters or subtitles to assist people with hearing impairments.

Accessing therapeutic interventions, rehabilitation and medication
Studies in the United Kingdom, Italy and Iran reported critical scenarios for those with health conditions, such as strokes and spinal-cord injuries, as a result of the decrease of inpatient and specialised rehabilitation services, and restrictions on transport. 24,29,30 Isolation and separation from families can have a negative impact on well-being, sometimes with devastating consequences. In China, a 17-year-old boy with cerebral palsy, Yan Cheng, died from starvation and lack of water as his father and brother were removed from their home and quarantined in a facility over 20 km away after being thought to have contracted COVID-19. 31,32 In South Africa, most rehabilitation services have been temporarily cancelled, as far as we are aware. People with mental health conditions have had reduced access to mental health services because of the limited number of clinics providing services, with some having been periodically closed as a result of quarantine procedures. 26 Special schools for disabled children, who require daily therapeutic services, have been closed since March 2020, leaving parents and caregivers with no or limited resources, and little or no training on how to assist their own children adequately in their homes.

Accessing intensive care unit beds and ventilator support and discriminatory triage policies
During times of disaster and emergencies, when availability of resources is restricted, healthcare workers may be forced to make decisions as to who qualifies to receive life-saving healthcare. In South Africa, triage policies relating to who can qualify for ICU admission and ventilator access currently discriminate against people with physical disabilities. 4 Current healthcare triage policy aligns with the Frailty Assessment Score. Accordingly, a person with a Frailty Assessment Score of above 4 (anyone who is 'mildly frail' to 'severely frail') will be excluded from ICU access as well as ventilators if they become ill and resources are scarce. They will only be provided with oxygen therapy and urgent palliative care. This exclusion based purely on category of impairment raises questions relating to the value and worth placed on the lives of people with disabilities.

Conclusion
People with disabilities, especially those living in LMICs, experience significant challenges in accessing healthcare services and support. During the current pandemic, many people with disabilities living in South Africa are unable to access healthcare facilities, including ICU beds and ventilator access, receive therapeutic interventions or rehabilitation, as well as medication.
The issues at play here are broad, and, indeed, structural. It is by now well established that the COVID-19 pandemic exposes and reproduces existing inequalities 41,42,43 across the world. Debates on this issue emphasise issues of race and social class, and geographic and environmental issues. 44,45 Despite the fact that there is a very well-established relationship between disability and poverty, 46 the issue of disability in relation to COVID-19 is seldom mentioned as a consideration in debates about healthcare access and resource allocation. 47 We have argued elsewhere that an aspect of the violence against people with disabilities lies in the continuing invisibility of disability in public discourse, 48 leading to daily struggles for people with disabilities to gain access to employment, education and healthcare. Under pandemic conditions, a lack of considering disability as a public health equity issue may have profound consequences for the health, and the lives and livelihoods, of people with disabilities and those who care for them. At the heart of this issue is the question of whose lives are perceived to have worth -whose lives matter.