Tom Shakespeare, Nicholas Watson, Richard Brunner, Jane Cullingworth, Shaffa Hameed, Charlotte Pearson, Nathaniel Scherer and Veronika Reichenberger Report of in-depth qualitative interviews with 69 disabled people in England and Scotland as well as with 28 key informants from infrastructure organizations in the voluntary and legal field about the effects of COVID-19 and the measures taken to control it. They discuss the dislocations it has caused in daily life; the failure of welfare; the use of new technologies; and participants’ views on leadership and communication.
People with disabilities may be at higher risk for coronavirus (SARS-CoV-2) and worse outcomes from COVID-19. In addition, the social response to the pandemic is having a disastrous impact on disabled people and their families. We were funded by UKRI to conduct a qualitative study of the effects of COVID-19 on disabled people in the UK. We spoke to 69 disabled people in England and Scotland from June to August 2020. We also spoke with carers for children with disabilities and with 28 people who have worked for organizations for the disabled or in education, health or social affairs. Here we discuss our results using the four most urgent messages.
First, everyday life was disrupted. People described how their health care and support had changed significantly. Routine rehabilitation sessions were canceled. Attempts to replicate these via video conference or telephone have not been seen as particularly successful. Many annual checkups have been canceled, increasing the risk of overlooking preventable medical problems. The provision of resources was badly affected. All of this can lead to dysfunction and increased addiction.
People were afraid of the virus. Many found it impossible to practice adequate social distancing. The hard of hearing talked about the problems associated with face covering: Transparent masks for lip reading were very scarce, leaving people excluded from the spoken world. Disabled people appear to have been an afterthought in the response to COVID-19. For example, we have heard that provision was often made for able-bodied children studying from home, but not initially for children with special educational needs and disabilities, and that learning materials were often inaccessible or inadequate. Personal protective equipment (PPE) has been provided for hospitals but not for nursing homes and then in nursing homes but not for caregivers and personal assistants. Some disability organizations had to step in and procure PPE for their members.
Second, our respondents said that social welfare was not responding effectively. Our research participants described how the pandemic and protective measures had led to increased dependence on their family and other informal carers. The first was the closure or suspension of day care centers, day services and large parts of the social care system. A large number of social security contracts have been terminated, suspended or severely restricted. Second, some of our participants were concerned that too many people would come into their own homes and wanted to reduce contact. As a result, they preferred to rely on family members.
Social services appear to have been largely absent from some agencies. People told us that funding for their normal support services had completely stopped and they had no other alternative. Telephone support was offered to others. When new needs emerged, it was often difficult to get support. The pandemic has highlighted the fragility of social bonds for people with disabilities, especially people with intellectual disabilities. Once funding and staff are withdrawn, a person can be isolated and spend most of the day alone or indoors with no meaningful activities. This leads to increased fear and loss of confidence. For many we spoke to, boredom with limited social opportunities was a key feature of the embargo.
These problems would have been much worse without the role of the third sector. At the onset of the pandemic, many organizations fundamentally changed the way they work, filling the gaps in social care, promoting people’s mental health and well-being, and also providing direct services: PPE, food, digital devices.
Third, zoom and other digital technologies have become very important. Many disabled people have benefited from this as barriers to entry have been removed. But disabled people face a digital divide that is twice that of non-disabled people. The best disability organizations understood the threat of a digital divide and acted quickly to prevent it. Completely new online networks such as “The Staying Inn” have been set up. Online access can do many things. But it cannot replace human touch and connection. Children long to be in school with their peers. Adults want to go to work or daycare to see their friends.
Ultimately, the participants felt that communication and leadership errors had occurred. The UK government’s actions are frustrated. Many people were also unsure of how to protect themselves. The science of COVID-19 has advanced, but the news about which people needed to be screened and which didn’t remain unclear. Volunteer organizations and schools have received conflicting information, often at the last minute. Many disabled people organizations and other community groups have played a key role in providing the right information.
The government’s daily briefings were insufficient to help people with learning disabilities, in particular, understand what to do differently. There was also no routine interpretation of UK government briefings in sign language, which sends out a very negative message. The Scottish Government did better.
Our data suggests that many disabled people and their families felt abandoned and forgotten during the pandemic. In many cases, their needs have not been protected and the state’s response has endangered their human rights. Such needs must be fully addressed in COVID-19 responses – health, education, social care. Decisions should be communicated in accessible formats. Local authorities should make it clear that social security packages will be fully reintroduced and resources invested in addressing the backlog in social welfare assessments. The restoration of COVID-19 safe social supports and services is urgently needed. The third sector needs support to ensure that it can continue to help disabled people and their families. In the long term, the social security system has been broken for some time; His vulnerability was exposed by the pandemic. In order to achieve quality welfare, secure funding is required.
Policy makers and social insurers need to work with disabled people and their organizations to meet their needs. Post-pandemic social change is necessary so that disabled people can not only regain what was lost in the pandemic, but also gain full citizenship rights in the UK.
Note: The above information refers to the author’s paper available here (form).
About the authors
Tom Shakespeare is Professor of Disability Research at the London School of Hygiene & Tropical Medicine.
Nicholas Watson is Professor at the Institute for Health and Wellbeing, University of Glasgow.
Richard Brunner is a research fellow at the Center for Disability Research at the University of Glasgow.
Jane Cullingworth is a research student at the University of Glasgow’s Center for Disability Research.
Shaffa Hameed is a research fellow at the International Center for Disability Evidence at the London School of Hygiene & Tropical Medicine.
Charlotte Pearson is a lecturer at the Institute of Health & Wellbeing at the University of Glasgow.
Nathaniel Scherer is a research fellow at the International Center for Disability Evidence at the London School of Hygiene & Tropical Medicine.
Veronika Reichenberger is a research fellow at the International Center for Disability Evidence at the London School of Hygiene & Tropical Medicine.
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