In what is generally considered normal circumstances, people with disabilities struggle with a lack of access and inclusion. With a global pandemic and national lockdown, the disability community is even worse off. To help combat discrimination and exclusion, the Disability Rights Unit at the Centre for Human Rights (CHR) is assisting with the COVID-19 Disability Rights Monitor (DRM) initiative.
Seven organisations, including the European Network on Independent Living, International Disability Alliance and Disability Rights Fund, established the initiative in April to collect reliable, quantitative and qualitative data through a survey on the experiences of persons with disabilities during the COVID-19 pandemic and how different governments are responding to this emergency situation.
To learn more about the initiative and what researchers found in South Africa, we spoke to Innocentia Mgijima-Konopi, programme manager at the Disability Rights Unit.
What motivated the research?
Innocentia Mgijima-Konopi: The research was a response to emerging evidence that indicated that persons with disabilities were being disproportionately affected by the emergency measures undertaken to address the coronavirus pandemic by governments globally.
For us it was essential that, as governments rushed to respond to the coronavirus, they did not lose sight of the distinct circumstances of persons with disabilities. We also recognized the significance of reliable quantitative and qualitative data in achieving a disability-inclusive COVID-19 response and recovery.
The research looks to contribute towards ensuring that the emergency measures taken by governments are mindful of persons with disabilities to prevent the occurrence of human rights violations.
How was information gathered?
Information from persons with disabilities was gathered through a survey published on the DRM website (which can be found here: https://covid-drm.org/). Efforts were made to disseminate the survey through various national disability rights organisations.
The survey is targeted at persons with disabilities, their family and organisations of persons with disabilities. It is quite detailed with 26 substantive questions. It seeks to find out whether, persons with disabilities:
- Are able to access disability specific services such as rehabilitation services, therapies and assistive technology they need;
- Have access to formal (such as personal assistance) or informal support (such as family/neighbours) to assist them in their daily activities where such assistance is required;
- Can access general services accessed by others such as food and medicine.
The survey also looks at whether they can access information about the prevention of COVID-19 in accessible formats and medical treatment on an equal basis. It aims to obtain information regarding what governments are doing to protect the core rights of persons with disabilities.
It seeks to understand what social protection measures government has put in place to mitigate the impact of COVID-19 on persons with disabilities. It is also tuned towards shedding light on the rights of persons with disability in situations of intensified vulnerability for example children, older persons, homeless persons as well as people in homes, institutions, and rural settings.
To date 1 600 responses have been received – the majority from persons with disabilities.
The survey is available in 22 languages and will remain open until 31 July 2020 and ROLLING INSPIRATION readers are encouraged to participate. The survey can be found here: https://covid-drm.org/.
What were some of the findings from your research globally?
Many respondents say that governments are not taking inclusive measures in their response to the pandemic. When measures are implemented, most of the time, they are not specifically dedicated to persons with disabilities but to the population as a whole; thus, specific needs are not taken into account.
In some countries, however, the lack of measures at the national governmental level is somewhat counterbalanced by actions taken by local governments [or other organisations]. Experiences of the pandemic can, therefore, be uneven within countries depending on where persons with disabilities live.
Some of the most common concerns communicate by persons with disabilities and their representatives include:
- Fear of being isolated, abandoned and without any support;
- Feelings of loneliness, frustration with lack of inclusive measures and isolation;
- Lack of access to previously provided service;
- Access to healthcare (both for COVID-related issues and their usual needs);
- Fear of pursuing medical care;
- Access to food;
- Financial difficulties;
- Access to education given that digital formats are not always accessible (both in terms of format and costs).
[And many more.]
What were some of the findings from your research in South Africa?
- Lack of Inclusive Communication:
Concerns were raised that persons with disabilities were receiving some but not all the information being made available to the public on the prevention of OVID-19 and the government responses including emergency measures. In particular, regulatory changes and updates were not always provided in accessible formats timeously.
Persons with disabilities, their families and representative organisations were not always aware of different measures government were taking to protect the life, health and safety of persons with disabilities. For instance, respondents were not sure whether testing and treatment services were fully accessible to persons with disabilities or the measures government have taken to make sure learners with disabilities were catered for during lockdown.
- Barriers to accessing healthcare services:
Access to certain specific disability healthcare services and treatment such as rehabilitation had become harder. Public hospitals for the greater part are only offering emergency related therapies and not occupational and physiotherapy.
Concerns were raised at the readiness of medical staff to assist persons with intellectual and psychosocial disabilities who may need COVID-19 testing, screening and treatment. Fear of de-prioritisation when it comes to accessing ventilators with reference to Western Cape triage guidelines and critical care decision tool.
- Inadequate monitoring of persons with disabilities in institutions
Respondents who work in institution have highlighted that the approach taken by government has been inconsistent. Different provincial governments are providing different levels of support. There are some institutions where government has provided protective equipment for residents while many others did not.
Social workers are overloaded with work and often were not available to provide support to institutions. Concerns were raised by organisations of persons with disabilities on whether the government was monitoring the situation in these institutions.
- Access to Complaint Mechanisms:
Access to independent complaint mechanisms to raise some of the challenges faced by persons with disabilities during this time is limited. While there are hotlines, 60 percent of narrative responses indicated poor services as they struggled to get through to these mechanisms, a lack of transparency and action once complaints had been registered, or a lack of resources for government offices to be open or address all complaints, decreased awareness of mechanisms in rural areas.
Visit the website for more information at https://covid-drm.org/.