Written evidence submitted by UK Women’s Budget Group, The Fawcett Society, LSE Department of Health Policy and Mile End Institute at Queen Mary University of London
Unequal impact inquiry: Coronavirus and Disabled people
This is a joint submission by the UK Women’s Budget Group, The Fawcett Society, Mile End Institute at Queen Mary University of London and the London School of Economics Department of Health Policy. It draws on analysis of a survey of 3,280 individuals, including 678 disabled people, conducted in April 2020; on an ongoing weekly qualitative diary research project conducted by Fawcett with around 70-100 women each week; and on wider research. It makes recommendations for how to mitigate the impact on disabled women including by removing barriers to social security, increasing economic support and ensuring people can work or isolate safely.
Poverty and debt
- Disabled people were most likely to say that they will come out of the coronavirus outbreak in more debt. 34.2% disabled women said their household had already run out of money, compared to 24.4% non-disabled women.
Time use and unpaid work
- A higher proportion of disabled people working from home, but particularly disabled women, reported spending more time working now compared to before the crisis. These disabled women were also more likely to report that they are finding it more difficult to focus at work and that they are finding work more stressful.
- Women reported doing more of the housework and work to look after their children, and this was no different for disabled women. 68.0% of disabled women reported doing the majority of the housework, and 72.8% reported doing the majority of work to look after their children.
- A quarter (25.5%) of disabled women and 22.3% of disabled men said they had not left their home in the past week.
Parenting and childcare
- Over a third (37.7%) of disabled mothers said they were struggling to feed their children, compared to 16.7% non-disabled mothers.
- 39.7% of disabled mothers reported that their children did not have access to the equipment they needed to study at home compared to 24.2% of non-disabled mothers.
- 58.8% disabled mothers said they were struggling to go to the shops or do other tasks because their child/ren were at home, 59.6% said they were struggling to balance paid work and looking after their children, and 63.0% said they were struggling to cope with all the different demands on their time.
Access to support
- 1 in 5 disabled women reported losing support from the government (20.0%), and 2 in 5 (42.9%) reported losing support from other people.
- A third (32.3%) of disabled women said they were not sure where to turn to for help as a result of the coronavirus outbreak.
Mental health and wellbeing
- 56.4% of disabled women reported finding social isolation difficult to cope with, compared to 41.6% of non-disabled women.
- Disabled women were slightly more likely to say that the current situation was causing a strain in their relationships; 42.2% said that social isolation was making relationships at home more difficult, compared to 37.0% non-disabled women.
- Just 24.9% and 28.9% of disabled women reported having high life satisfaction and happiness respectively, compared to 38.6% and 39.9% of non-disabled women.
- Anxiety was highest among women overall, but particularly disabled women. Over half of disabled women (53.1%) reported high anxiety.
- We are making this joint submission to the inquiry based on polling research undertaken 15-21 April 2020 on the impact of Coronavirus on different groups of women. The survey comprised an overall nationally representative sample and filtered booster samples drawn from online panels used to ensure sample sizes for populations of interest were robust. We grouped respondents as disabled if they said that they were disabled or had a physical or mental health condition that limits their activities. 678 respondents selected this option, comprising 377 women and 301 men.
- The authors of this report then weighted the data to the current Labour Force Survey on age, gender, region, and education for each population, and conducted analysis. Only results that are statistically significant are highlighted in the text throughout this report. Because only a sample of the full population was interviewed, all results are subject to margin of error, meaning that not all differences are statistically significant.
- In addition, since the beginning of the lockdown period Fawcett has been conducting weekly diary research with a convenience sample of women responding to an online call. Between 70 and 100 women have provided a short update on their experiences, and answered an additional question, each week.
- The COVID-19 pandemic is a unique combination of both an unprecedented health and economic crisis. Evidence from the previous (2008) recession showed us that disabled people are more likely to bear the brunt of economic crises. Disabled people are less likely to have a financial cushion to protect themselves and their families from impacts of job or earnings loss, and rely more on public services.
- Disabled women face specific issues during this time. Women are also more likely to be disabled than men, and disabled women are at heightened risk of poverty, insecure and low paid employment, and of domestic violence than before the crisis compared to non-disabled people and men. Nonetheless, many of the issues caused by the crisis and policy responses, particularly those relating to finances and poverty, impact disabled women and men equally.
- The consequences of unequal impacts are expected to be stark and long-lasting. After the 2008 recession, the previous converging disability pay gap widened and funding for many essential services for disabled people was cut. However, unequal economic impacts are by no means inevitable and can be ameliorated or (as is more often the case) heightened by economic and policy choices.
- This crisis also poses a greater threat to the health and mortality of disabled people. ONS data from March – May 2020 shows that disabled women with limiting disabilities aged under 65 are 11.3 times more likely to die than non-disabled women, disabled men aged under 65 with limiting disabilities are 6.5 times more likely to die. A third of all lives lost to Coronavirus in the UK have been those of disabled people. This warrants comprehensive investigation.
- Disabled people are more likely to be required to shield themselves for the entirety of the crisis - thereby experiencing greater restrictions to socialising, exercise, and completing basic tasks outside the home.
- There have been some positive responses by communities to create networks of support for people who cannot rely on family or friends. But this response comes in the context of reduced statutory support for disabled people. The Coronavirus Act 2020 included a suspension of duties upon council social care services to meet the essential care needs of disabled people, and a relaxation of the thresholds of detention on mental health grounds. These changes, combined with the economic vulnerability of many disabled people, raise concerns that disabled people will be left behind, unable to access the most basic support or essentials. Furthermore, there are considerable safeguarding concerns around the replacement of statutory services with potentially unvetted volunteers, and emerging reports that criminals are exploiting vulnerable people.
- Considering the unique position disabled people are in during this crisis, relatively little attention has been paid to their experiences. This is partly due to a lack of data and information published. Coronavirus mortality data with splits by disability and/or impairment type have not yet been published (although this is expected in June). The findings below provide a snapshot of the experiences of disabled people in the first months of the crisis, and the ways their experiences have differed from non-disabled people.
Income and employment
- Responses to the survey indicate that disabled people are bearing the brunt of the economic impacts of the crisis. Higher proportions of disabled people report being hit financially compared to non-disabled people. Disabled people were most likely to say that they will come out of the coronavirus outbreak in more debt. Strikingly, 34.2% disabled women said their household had already run out of money, compared to 24.4% non-disabled women.
- Our diary research also exemplified some of the additional costs faced by disabled women during lockdown. One woman who has restricted mobility due to cancer treatment, and is acting as a carer for her daughter’s young children, described how she had to take taxis to get food and other supplies for the family, at considerable cost. Another who is going through early menopause and health conditions described how she had lost work and income due to an intersection of poverty and disability: “I have lost the part time work as I also do at the local university, as I can't access Zoom as my laptop is old and I can't hold my phone for long due to joint problems, so I've lost that extra income.”
- Disabled women in employment were no more or less likely to have moved to working from home during lockdown. However, a higher proportion of disabled people who are working from home, but particularly disabled women, reported spending more time working now compared to before the crisis. Disabled women were also more likely to report that they are finding it more difficult to focus at work and that they are finding work more stressful. At the same time, disabled people report feeling more productive at work in higher proportions than non-disabled people, perhaps related to the fact that they are working more. These differences were statistically significant, albeit with quite a wide margin of error in the findings given smaller sample sizes.
- One of our diary respondents with chronic asthma described interactions between her health conditions, missed treatment, and employment: “I had 2 speech therapy sessions before the lock down. These have stopped because of lock down and I still struggle to speak properly (not good when you want to be taken professionally).” The unavailability of support and healthcare during this crisis does not just affect disabled women’s wellbeing, it affects their employment prospects.
Time use and activities
- Women reported doing the majority of housework and looking after children, and this was no different for disabled women. 68.0% of disabled women reported doing the majority of the housework, and 72.8% of those with children under 11 reported doing the majority of work to look after their children. The proportions of disabled women with other adults in their households who reported that other household members were spending more time doing household tasks were also similar (42.5% and 42.0%). One woman who has cerebral palsy described how unequal distribution of childcare was the key pressure she faced: “It is the home schooling that I am finding the most difficult… I feel very strongly that the role of home schooling is hugely gendered - my husband is also working at home, and yet it is me that is managing 95% of this task - without any form of discussion.”
- Many disabled people face additional restrictions on their activities and freedoms due to being at higher risk of more severe impacts of coronavirus and needing to shield completely. Overall, disabled people were more likely to spend extended periods without leaving their home. The proportion of people who said they had not left the house to go for a walk, exercise or go shopping in the last week was high at 16.6%, however, this rose to a quarter (25.5%) when focused on disabled women and 22.3% of disabled men.
- While ensuring that clinically vulnerable people isolate at home is an essential part of the coronavirus response, going for extended periods without leaving the house could have significant impacts on mental and physical health. The disproportionate need for disabled people to adhere to more severe restrictions is likely, in turn, to result in exacerbated negative outcomes.
Parenting and childcare
- As with all disabled people, disabled parents were disproportionately hit by the financial implications of the coronavirus compared to non-disabled parents. While sample sizes are small for this group, meaning there is a wider margin of error in the findings, the differences we report were statistically significant. Over a third, 37.7%, of disabled mothers with children aged under 11 said they were struggling to feed their children, compared to 16.7% of non-disabled mothers. Access to technology vital for the switch to home-schooling was a particular problem for this group of disabled parents. 39.7% of disabled mothers reported that their children did not have access to the equipment they needed to study at home, such as a computer or printer, compared to 24.2% of non-disabled mothers.
- The closure of schools and requirement for parents to home-school their children put considerable additional pressure on mothers of younger children. Disabled mothers were especially likely to say they were struggling to juggle childcare, work and all other responsibilities during this time. 58.8% of disabled mothers said they were struggling to go to the shops or do other tasks because their child/ren were at home, which was significantly different to non-disabled parents. 59.6% said they were struggling to balance paid work and looking after their children, significantly more than non-disabled men; and 63.0% said they were struggling to cope with all the different demands on their time, significantly more than each other group.
- Around half of all parents reported that they were worried about their children’s mental health at this time. Disabled women were most likely to report worrying about their children’s mental health (66.9%), followed by disabled men (57.0%), and non-disabled women (48.8%) and men (40.3%).
Access to support
- Our survey asked disabled people (and retired people) a set of questions about whether they had lost support from different sources. Responses revealed that 1 in 5 disabled women reported losing support from the government (20.0%), and 2 in 5 (42.9%) reported losing support from other people during the coronavirus outbreak. Rates of lost support were similar, and on some measures a little higher, for disabled men. Loss of support is likely both a consequence of the implementation of rules around social distancing and of the changes to legislation outlining expectations for the care and support of disabled people.
- High proportions of disabled people said they didn’t know who to turn to for help, suggesting that the increase in informal provision has not closed this gap. More than 1 in 10 (11.4%) disabled women said they strongly agreed they were not sure where to turn as a result of the coronavirus outbreak. This increased to a third (32.3%) of disabled women when including those who said they somewhat agreed. Despite this loss in support, 24.7% of disabled women said they now had more contact with people than prior to the coronavirus outbreak.
- A key concern about the response to the coronavirus crisis is the potential knock-on-effect redirecting resources to fight the disease will have one on healthcare and resources available for unrelated conditions. This will be of greater concern for many disabled people who rely on these services.
- Disabled respondents, both men and women, were more likely to express higher levels concern about access to NHS treatment or medication not related to COVID-19. However, despite these differences, it is important to note that concern was high for all respondents. Around 2 in 3 women (disabled and non-disabled), and disabled men, were worried about access to NHS treatments during the coronavirus outbreak, compared to 48.4% of non-disabled men. In contrast, concern about access to medication was higher among disabled people. Access to medication was a concern for 60.6% of disabled women, compared with 43.2% non-disabled women.
- This disparity is also present in the experiences of our diary respondents. A number spoke about losing access to healthcare that had been previously in place:
- “Anyone at all with a medical condition, cannot currently access or feels too afraid to access their usual medical and healthcare… My partner has a cardiac nurse who did visit once a month. She stopped that, for understandable reasons, but there have been no 'virtual' consultations instead - it has just simply stopped.”
- One woman had recently moved, and care for an ovarian cyst had been transferred to a new hospital with significant delays. She described how this interacted with her mental health condition: “now I’ve received a letter saying my case is non urgent and I won’t hear anything for three months. I understand why and I appreciate the health service is under massive strain but I just don’t know what’s going on and it’s not really helping me manage my anxieties and concerns.”
- Another woman who is a cancer patient described the complex web of challenges she faced, and feeling alone in facing them: “Toothache now - nothing to be done about it. Still facing challenge of two cancelled operations, a further investigation cancelled, no post-cancer treatment support, including investigation of new symptoms. Luckily(!) had problems before lockdown, so had annual mammogram etc brought forward. Without that, I would be going out of my mind with worry. Can telephone doctor which is reassuring, but otherwise, feel left adrift, although I have NO desire to go to any hospital anywhere for fear of catching Covid19.”
- This conflict between needing support, and fears of infection were present in the responses of a disabled woman with early menopause and mental health conditions: “I've been trying to get my usual prescription medication online as I can't go in person as usual, but nearly 4 weeks later it still hasn't come. I've also found a breast lump but don't know what to do - if I could see a doctor then be referred to hospital for a scan, as I've had before. If I did its a risk to go on 2 buses to hospital, and it might be negative anyway....”
- Our research also identified that disabled women were more likely to state that, during lockdown, they had struggled to access necessities from shops, with 63% of disabled women agreeing compared with half of non-disabled women and men. This also comes through in our diary research, with one woman describing the fear and concern evoked by her shopping experiences after some of the initial restrictions were eased: “I have been once so far, since the rules were relaxed and I found it really quite frightening… I saw people with tunnel vision rushing round the aisles, wandering off from their trolleys to browse elsewhere, as if their shopping behaviour has never changed since lockdown”. Others described having to walk long distances with shopping, despite health conditions, so as to avoid potentially infectious public transportation.
Mental health and wellbeing
- Mental health had been raised as a major concern for everyone during this time. Everyone is learning to cope with the unfolding situation without physical contact with family members. Reviews of the impacts of quarantine report negative psychological effects including post-traumatic stress symptoms, confusion, and anger. The previous sections have shown that disabled people are more likely to have lost financial and practical support, to be struggling financially, and to report worries about access to healthcare. Disabled people are also less likely to have left the house in the last week, with many required to adopt stricter forms of social distancing. All of these concerns are likely to additionally impact disabled people's mental health considerably.
- When asked specifically about mental wellbeing, 56.4% of disabled women reported finding social isolation difficult to cope with, compared to 41.6% of non-disabled women. Disabled women were also slightly more likely to say that the current situation was causing a strain in their relationships; 42.2% said that social isolation was making relationships at home more difficult, compared to 37.0% non-disabled women.
- Our diary research highlights that the interconnectedness of families which include disabled people has ramifications for policy. As one respondent who is signed off work with mental and physical health conditions, and self-isolating with her husband who is a stroke survivor, says, “we have only a small circle of family and friends and every household is vulnerable, so an end to lockdown nationally, for us will not be an end to lockdown. I fear that we will never return to any sort of regular and spontaneous outdoors life or socialising without a vaccine.”
- Life satisfaction and happiness were both lower among non-disabled men and women. Just 24.9% and 28.9% of disabled women reported having high life satisfaction and happiness respectively, compared to 38.6% and 39.9% of non-disabled women. Non-disabled people overall, but particularly men, reported higher life satisfaction and happiness. Anxiety was highest among women overall compared to men, but particularly disabled women, with over half of disabled women (53.1%) reporting high anxiety.
- Disabled women in our diary research raised a number of reasons for anxiety that they have experienced. These included a lack of clarity over Government guidance, with one identifying how she had shielded intensely for a period of time, but had previously experienced anosmia (loss of sense of smell), and her anger at its late addition to the Government’s list of symptoms. Others described variations on this, and feeling as though disproportionate outcomes for disabled people were being described in Government and media narratives as primarily due to their conditions and comorbidities, rather than due to the virus and the policy response. Others described additional pressures and stresses during lockdown: “I have existing health conditions and live in poverty already, and I feel increasingly worn down by the extra demands made by trying to sort things that are usually so straightforward - such as carrying a week's shopping back on foot as I can't get the bus, putting pressure on body.”
- The survey did not include measures of personal wellbeing before the coronavirus outbreak, but average responses were all considerably lower (or higher in the case of anxiety) than ONS estimates from late 2019 and similar to current ONS survey estimates. Average life satisfaction, happiness, and anxiety in the period July to September 2019, across the whole population, were 7.7, 7.5 and 2.9). This is compared to 6.9, 6.4, and 5.2 in the most recent period covering the coronavirus crisis.
- Our research identifies that disabled women are facing serious crises of financial support. They are more likely to say that their household had already run out of money, and more disabled mothers report struggling to feed their children. Disabled women are more likely to report increased strain in home relationships, which suggests an additional domestic abuse risk when viewed in tandem with existing evidence about the higher risks disabled women face. Relevant Government departments should take the following steps to alleviate these pressures, which could particularly support disabled women:
- Immediately increase child benefit to £50 per child per week to help get support to those who need it most and support with home schooling costs.
- Increase Employment Support Allowance payments in line with the rise in Universal Credit and Working Tax Credit: at present, up to 2m disabled people have been left behind by the necessary and welcome increase in payments for other benefits, for no reason other than that they have the misfortune to be on legacy benefits.
- Immediately end the two-child limit and make advance payments of Universal Credit grants instead of loans, as well as abolishing the benefits cap to ensure households with disabled people claiming benefits get the support they need.
- Ensure that all workers have access to statutory sick pay and increase the level it is paid at.
- Increase Local Housing Allowance to the 50th percentile to support disabled renters.
- Work with local councils to assess and provide sufficient support for those disabled parents facing increased pressures as a result of school closures and other effects of lockdown. Work with schools to support shielding families to continue their children’s education.
- Require Local Authorities to be more flexible about care packages (portability of care packages) for disabled women trapped in social isolation and in danger from domestic abuse.
- Disabled people are less likely to have left their homes, and more likely to have struggled to access shops. This raises serious concerns about hunger and food security. It is vital that the government and local councils work with supermarkets to ensure that disabled people’s needs for groceries and shopping are prioritised.
- Many disabled people have been at the sharp end of the failure to limit the spread of Covid-19 in care homes while others may have had home support arrangements compromised. Many disabled women in our survey reported losing Government and community support. Sisters of Frida, a disabled women’s collective, recommends the following action be taken:
- Ensure supplies of PPE and testing to care home staff as well as domiciliary carers and personal assistants/carers.
- Test patients before discharging from hospital to care home.
- Stop the use of ‘blanket’ Do Not Attempt to Resuscitate orders (DNARs.)
- Require any councils enacting Care Act easements to release a document showing how they are continuing to deliver their duty of care to disabled people and how they made the decision to take that option and when it will be reviewed.
- The government should review the suspension of Care Act duties no less than every three months, reviewing its impact for disabled people who receive care funded by social services. This should also assess how the suspension is impacting those who have multiple protected characteristics, such as disabled BAME women.
- As well as facing reduced support from the state and their community, many disabled people face a lack of information due to policy decisions around the Covid-19 response. It is vital that disabled people and their needs are addressed:
- Ensure that personal assistants or family carers are allowed to accompany a disabled person with other physical or communication support needs at any time they are in hospital.
- Ensure information is available in accessible formats, Easy read, Large print, and in British Sign Language (BSL) and in different national languages.
- Ensure all essential public broadcasts are simultaneously translated into BSL.
- Ensure people are aware of the alternative services, volunteer programmes, and how to access them including for those not able to access the internet.
- Provide information and guidance with sufficient response time for disabled people to react and take action accordingly. The notice given for schemes such as the CJRS has been too short especially for disabled people.
- Comprehensive guidance should be released advising people on how to prevent the spread of COVID-19 while using care/personal assistant services, whether the care is funded by direct payments or provided by volunteers such as family members.
- Increase funding to both women’s organisations and mental health service providers working directly with disabled women, and provide training on their complex needs, to help disabled women access the support they need at this psychologically challenging time.
The Fawcett Society is the UK’s leading membership charity campaigning for gender equality and women’s rights at work, at home and in public life. Our vision is a society in which women and girls in all their diversity are equal and truly free to fulfil their potential creating a stronger, happier, better future for us all.
The UK Women’s Budget Group (WBG) is an independent network of leading academic researchers, policy experts and campaigners that analyses the gender impact of economic policy on different groups of women and men and promotes alternatives for a gender equal economy. Our work on Covid-19 can be accessed at: https://wbg.org.uk/topics/covid-19/
Queen Mary University of London is a research-intensive university that connects minds worldwide. A member of the prestigious Russell Group, we work across the humanities and social sciences, medicine and dentistry, and science and engineering, with inspirational teaching directly informed by our world-leading research.
The London School of Economics and Political Science (LSE) studies the social sciences in their broadest sense, with an academic profile spanning a wide range of disciplines, from economics, politics and law, to sociology, information systems and accounting and finance.
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