The Health Foundation’s COVID-19 impact inquiry is exploring the pandemic’s implications for health and health inequalities in the UK.
The pandemic has shone a light on pre-existing inequalities in the UK. If we are to build back fairer, we need the fullest possible understanding of the inequalities that have been highlighted and/or reinforced as a result of COVID-19. In November 2020 when the ONS published their finding that disabled people accounted for 59% of COVID-19 deaths, it became clear that inequalities on the grounds of disability were a critical area to understand. And this impact is a spotlight theme for the Health Foundation’s COVID-19 impact inquiry. Here, we explore how the effects of the pandemic have been felt more acutely by disabled people, with implications for digital inclusion, work and access to support and care at home.
Understanding COVID-19 through concepts of disability or underlying health conditions
There has been a surprising absence of analysis of the reasons for this particular inequality, as Disabled People’s Organisations and disability researchers have been quick to point out. The category of ‘underlying health conditions’ has been used prominently, including in press briefings and analysis, with little reference to ‘disability’.
There is some overlap between long-term health conditions and ‘disability’. Under the Equality Act 2010, the definition of disability is based on a physical or mental impairment (including diabetes and other conditions that also place people at higher risk from COVID-19) which has a long-term adverse effect on day-to-day activities. But a focus on the ‘underlying health condition’ categorisation has, in effect, pushed into the shadows other major disability-related risk factors, which offer vital clues to the support needed during the pandemic and how to build back fairer.
This is problematic both because there are many ‘disabled people’ who do not have ‘underlying health conditions’ but risk losing rights and support if their status as ‘disabled people’ is overlooked (for instance, people who are deaf and need accessible communication), and because, for those who do have underlying health conditions, it is not only their condition that creates risk, but the many social and environmental factors in their lives.
We need greater visibility and understanding of disability-related COVID-19 risk factors
Explaining deaths in terms of underlying health conditions omits reference to co-occurring risk factors – like having essential home visits from care workers, or living in a congregate setting, or (for those in jobs) being more likely to be in lower paid, front-line roles. The cross-party Women and Equalities Committee described a ‘slow response to protecting people in social care settings’, pointing to late identification of such risks. Such factors may be relevant to understanding Public Health England’s finding that COVID-19 death rates of people with learning disabilities have been between four and six times higher than for the general population.
Restrictions have had a disproportionate impact on aspects of disabled people’s lives
Disabled people, whether or not they have ‘underlying health conditions’ that place them at higher risk of COVID-19, are more likely to report that restrictions have had greater impact on their lives than non-disabled people (Figure 1), from their relationships being affected through to reduced access to health care (Figure 2).
Reduced access to health services and support at home
Studies suggest that social care support reduced and satisfaction with care plans also declined during the pandemic. Many ordinary opportunities that make up a life were also suspended – a challenge for anyone, but one that impacts on some disabled people especially sharply.
Philippa Russell and her son Simon wrote powerfully in the Daily Telegraph of this experience. Simon wrote, ‘The pandemic has changed things a lot. It’s made me feel very lonely, as I can’t go to my art classes, which was my favourite day activity. I used to love going to the café and the church too, because I see people there. There are two very friendly priests. But everything is closed now.’ And Philippa wrote, ‘Some people call it a ‘day service’, but for him it was a life…With COVID-19, you lose those relationships you’ve built up, and for someone like Simon, it’s a disaster.’
Shakespeare and colleagues found that where disabled people experienced good support, it was often from voluntary sector organisations, which flexed their approach in order to meet needs – diverting budgets into provision of electronic notebooks and training to enable participation in online activities, for instance. However, this support was dependent on fragile organisational networks.
Restrictions on other aspects of day-to-day life
Many disabled children and their families have been affected by lack of access to face-to-face schooling, sometimes compounded by digital exclusion and/or inaccessible remote learning methods. The lack of usual structure has implications for many disabled children’s social and emotional development. As the Women and Equalities Committee put it, delivering effective support for children with special educational needs and disabilities (SEND) during a public health crisis was a challenge ‘to which some local authorities were unable to rise’.
Access to food was compromised for some disabled people when supermarkets prioritised the ‘clinically extremely vulnerable’, at the expense of making adjustments for disabled people more generally. This meant, for instance, blind people were refused online slots even though they found it impossible to navigate shopping in person without getting too close to other shoppers and breaching distancing rules. The medical categorisation seemed to replace the (legally required) commitment to making reasonable adjustments.
Mental health and wellbeing
Disabled people have also been more likely to be lonely, worried about the pandemic, and anxious.The explanation that many COVID-19 deaths arise from underlying health conditions – intended as a reassurance to the majority – left many disabled people feeling frightened and othered. This, combined with examples of blanket application of Do Not Attempt Resuscitation notices on disabled people’s medical notes, and early draft NICE guidance (subsequently withdrawn) implying lesser treatment priority for people who required daily assistance, led some disabled people to feel their lives were simply being accorded lesser value.
The Greater Manchester Big Disability Survey found that 83% of respondents were worried about how they would be treated in hospital because of attitudes to disability. The emergence of potentially discriminatory practices was deemed ‘deeply concerning’ by the Women and Equalities Committee. While organisations such as the BMA and the CQC quickly put out statements opposing discriminatory practices, disabled people’s trust in health services may have been damaged.
How do we build back fairer?
As part of its COVID-19 impact inquiry, in December 2020 the Health Foundation brought together disabled people, academics and policy experts to explore disabled people’s perspectives and experiences of the pandemic, and to help identify opportunities to better support disabled people now and in the future. From the themes this roundtable discussion generated, and from recent reports by Disabled People’s Organisations and academics, a number of suggestions have emerged.
These include specific proposals on digital inclusion, imaginative support for disabled children and their families, and ongoing forms of flexible working to ensure inclusive working environments (at workplaces or at home), to name just a few. Some proposals are radical – for instance the European Disability Forum suggests ending institutionalisation in the wake of risks in congregate settings. This recommendation is perhaps especially relevant to people who are in hospitals or Assessment and Treatment Units without their consent – paradoxically placed there for their own safety, but nonetheless put at risk.
There are also wider themes in the learning so far, which need to shape future policy and action in the wake of the pandemic. We must ensure disabled people’s leadership and engagement in finding solutions, both immediate and longer term. We need greater infrastructure support for grassroots organisations, often led by disabled people with wider community links, to be able to respond immediately to need as it is experienced and to share power and resources over time (for a fuller discussion of the significance of investment in community-led infrastructure to enable all community members to thrive, see the final report of the Commission for Equality in Mental Health, as well as Hilary Cottam’s book Radical Help).
Achieving equality for disabled people
Future analysis and debate on the impacts of COVID-19 need to accord weight to inequalities faced by disabled people alongside inequalities based on ethnicity, poverty and other vital factors; as well as an appreciation of compounding experiences – for instance, the combined impacts of poverty, overcrowded housing and disability. Disability needs to be more central to our understanding of who is most affected and how.
Trust depends on everyone being confident that all lives are of equal value, which means rigorously applying human rights principles in the pandemic and beyond.
Finally, we need a universal commitment to the fundamental aim of greater equality for disabled people. Disabled people campaigned for years for a legislative framework designed to remove disabling barriers and promote greater equality. Emphasising instead a narrower clinical category of ‘underlying health conditions’ diverts focus from that full and equal participation – that is a foundation of good health and wellbeing.
Liz Sayce (@lizsayce) is a Visiting Senior Fellow at LSE.