- Dr Jane Cullingworth, University of Glasgow
- Dr Richard Brunner, University of Glasgow
- Professor Tom Shakespeare, London School of Hygiene and Tropical Medicine
According to recent ONS statistics disabled people accounted for 6 in 10 COVID-19 related deaths and disabled people are three times more likely to die from COVID-19. These are shocking statistics. However, it is not only the virus that has impacted on the lives of disabled people and their families – the social response to the pandemic has also had a devastating impact. The London School of Hygiene and Tropical Medicine and the University of Glasgow were funded by UKRI to do a qualitative investigation of the impact of COVID-19 on disabled people in Britain. We talked to 69 disabled people in England and Scotland in June-August 2020. We also talked to caregivers of disabled children and to 28 people who worked for disability organisations and statutory services. We report here on what we heard and make recommendations for action.
Everyday life has been disrupted
People described how their health care and support had changed significantly. Routine rehabilitation sessions were cancelled and attempts to replicate these therapies either via video conference or phone were perceived as not particularly successful. Many annual check-ups were cancelled, raising the risk of preventable medical problems being missed. Provision and servicing of assistive products and aids to daily living was severely affected. All this may lead to lack of functioning and increased dependency, with potential negative impacts on caregivers. Caregivers expressed concerns about long-term negative impacts for disabled children.
People were fearful about the virus and anxious about going out. People who were deafened or hard of hearing talked about the problems facemasks caused and the abuse they received if they asked people to remove them to help understanding. Social distancing deprived blind people of the ability to touch and therefore to navigate their worlds.
“it’s…like, missing out the shaking hands with people and giving them a hug and things like that. As a blind person I’m missing out on the whole lot because of social distancing.”(Adam, S15)
Social care has failed to respond effectively
People described how the pandemic and protective measures resulted in increased reliance on their family and other informal carers. Day centres, day services and large sections of the social care system were suspended or closed, and large numbers of social care contracts were cancelled, put on hold or severely limited. Many were anxious about having too many people coming into their own homes. Where possible, they preferred to rely on family members.
In some local authorities social services appear to have been largely absent. Some people told us that funding for their normal support services had been stopped completely. Others had been offered phone support; for example, one person we spoke to described how his support had been reduced from 12 hours a week to one short phone call a week. If new needs arose it was often hard to get support.
Many families are struggling, financially and emotionally. The pandemic has illuminated the fragility of social bonds for disabled people, particularly people with intellectual disabilities. Many are experiencing isolation. For people with existing mental health issues the pandemic has made things worse and there has been limited access to specialised services.
“There’s nothing I can do to make my day shorter. At the moment I’m trying to sleep to get rid of some of the day.”(Megan, S10)
These issues would have been much worse but for the role played by the third sector. At the start of the pandemic many organisations completely changed the way they work, filling gaps left by social care and helping people’s mental health and wellbeing.
Zoom and other digital technologies have become very important
Online platforms were “a lifesaver” for many, removing access barriers and facilitating connection, support and information. The best disability organisations understood the threat of a digital divide and moved fast to prevent it. Entirely new online networks, such as The Staying Inn were established. Online access can do many things, but it cannot replace human touch and connection. As one participant said, “you can’t play pool on Zoom” (Anne, S34). While there has been a thriving online community, the digital divide faced by disabled people is over twice that of non-disabled people (ONS 2019), so many were excluded.
Participants felt there had been failures of communication and leadership
Participants expressed frustration over the actions of the UK Government. Communication was badly handled and messaging about shielding was unclear. Many people were unsure about how to protect themselves. Disabled people’s organisations and other community groups played a key role in getting the right information across. Government daily briefings highlighted the general population health significance of COVID-19 but were not sufficient to help people with learning difficulties. Nor has there been routine sign language interpretation of UK Government briefings, which sends a very negative message. The Scottish Government has done better.
Recommendations for action
Our data suggest that many disabled people and their families have felt abandoned during the pandemic. For disabled people existing structural failings and inequalities have been exposed and magnified. In many cases their needs were not protected, and the response of the state has compromised their human rights.
The needs of disabled people must be fully considered in pandemic responses
Disabled people’s needs must be considered before guidance is issued. Equality impact assessments need to be undertaken, considering the implications on different impairment groups and as well as those with combined impairments. Decisions need to be communicated in accessible formats.
Supports and services need to be reinstated
Local authorities need to commit to fully reinstating social care packages. Further, resources need to be invested to address the backlog in social care assessments. The reestablishment of social supports and services that are COVID-19 safe is urgently needed.
Addressing the impact of the pandemic
Measures are needed to ensure that disabled children receive support to ‘catch up’ on the educational provision that they were excluded from during the pandemic. Health and rehabilitation services need to urgently address the physical and mental health needs of disabled people that have been exacerbated by lockdown.
Overhauling social care
Social care is central to enabling disabled people to live independently in society, as reflected in the recently released Independent Review of Adult Social Care. The vulnerability of the social care system, which has been broken for some time, has been exposed by the pandemic. An overhaul is required that places the individual and their care at the centre. Secure funding is required that supports community-based delivery.
Supporting the third sector
The third sector needs to be supported to ensure it can continue to provide help to disabled people and their families. Three ways to achieve this are:
- to work with the sector as equal partners rather than contractors
- to reduce unnecessary reporting and administration, and
- to provide fair and longer-term funding.
In all areas, policymakers and social care providers must work collaboratively with disabled people and their organisations to address their needs throughout this pandemic and beyond. Fundamental change is required to enable disabled people to not only regain what has been lost through the pandemic, but also to gain full citizenship rights.
Image credit: Paul Maguire | IStockphoto