Digital participation of people with profound and multiple learning disabilities during the Covid‐19 pandemic in the UK

Background: During the Covid‐19 pandemic, there has been a worldwide increase in the use of digital technology. Many people with learning disabilities have learned new digital skills, taken part in online activities, and kept in touch with family and friends using video calls. However, the experiences of digital participation or nonparticipation for the people with profound and multiple learning disabilities (PMLD) is less understood. Method: Between December 2020 and August 2021, family carers or paid support workers of adults with PMLD completed an online survey around the experiences of the person they care for during the Covid‐19 pandemic, including questions on Internet use. We draw on the findings of this UK‐wide study to explore the digital participation of the people with PMLD during the pandemic. Findings: Around half of the people with PMLD had Internet access at home. Around half of the participants interacted with others on video calls like Facetime or Zoom and most commonly used the Internet for being with family and friends online and streaming TV and films. In the event of another lockdown, 27.5% of the people supporting someone with PMLD said they would like support with technology to make seeing friends and family easier. For some the people, digital participation during the pandemic was not beneficial enough to want to continue when restrictions eased. For others, the new online experiences had the potential to be developed in their postpandemic lives. Conclusion: Around half of the people surveyed participated in digital activities during Covid‐19. Future attention is needed to afford more people opportunities, and respond to access barriers experienced for the people with PMLD and those that support them. Accessible summary: During the Covid‐19 pandemic, a lot of people with learning disabilities used the Internet more than they had done before. Before this research, we did not know very much about how people with profound and multiple learning disabilities might be able to use the Internet.Family carers or paid support workers of people with profound and multiple learning disabilities filled in an online survey about their experiences during the Covid‐19 pandemic. This included how people with profound and multiple learning disabilities used the Internet.The researchers found that around half of people with profound and multiple learning disabilities in the study had Internet access at home. People with profound and multiple learning disabilities mostly used the Internet for being with friends and family online and for streaming TV and films. Around half of people with profound and multiple learning disabilities used video calls (like FaceTime or Zoom).If there is another pandemic, and people cannot go out, more help with technology is needed so that people with profound and multiple learning disabilities can see their family and friends online. This is very important for people who do not live with family.Some people thought digital participation was useful during the pandemic, but they preferred to see people in‐person. For others, being online was a new way of being with other people that they wanted to carry on using or make better.

Whose uncertainty? Learning disability research in a time of COVID-19

UK government responses to COVID-19 have intensified experiences of uncertainty for people with learning disabilities. The pandemic has eroded the support people receive, previously weakened by austerity measures. In research, COVID-19 related uncertainty has led to some reworking of methods and intensive contingency planning. This was to fulfil funding requirements and was underpinned by research teams' commitment to continuing research with people with learning disabilities not despite, but because of the pandemic. This is in a context where people with learning disabilities have been systemically excluded from research participation. Here, we reflect on these processes in relation to a project exploring how to improve the support for older people with learning disabilities. We consider the distribution of uncertainty in relation to conducting research during this time and ask whose uncertainty is attended to in these mid- and post-pandemic methodological debates and why. We suggest pandemic ‘disruption' has created space for critical reflection allowing methodological creativity and consideration of in between strategies of trust, intuition, and emotion. We caution against the re-constraining of this space, instead arguing for continuing flexibility and creativity, where uncertainties are shared rather than used as a tool of control or dismissal of claims to support. [ FROM AUTHOR]

Digital participation of people with profound and multiple learning disabilities during the Covid‐19 pandemic in the UK

Background Method Findings Conclusion During the Covid‐19 pandemic, there has been a worldwide increase in the use of digital technology. Many people with learning disabilities have learned new digital skills, taken part in online activities, and kept in touch with family and friends using video calls. However, the experiences of digital participation or nonparticipation for the people with profound and multiple learning disabilities (PMLD) is less understood.Between December 2020 and August 2021, family carers or paid support workers of adults with PMLD completed an online survey around the experiences of the person they care for during the Covid‐19 pandemic, including questions on Internet use. We draw on the findings of this UK‐wide study to explore the digital participation of the people with PMLD during the pandemic.Around half of the people with PMLD had Internet access at home. Around half of the participants interacted with others on video calls like Facetime or Zoom and most commonly used the Internet for being with family and friends online and streaming TV and films. In the event of another lockdown, 27.5% of the people supporting someone with PMLD said they would like support with technology to make seeing friends and family easier. For some the people, digital participation during the pandemic was not beneficial enough to want to continue when restrictions eased. For others, the new online experiences had the potential to be developed in their postpandemic lives.Around half of the people surveyed participated in digital activities during Covid‐19. Future attention is needed to afford more people opportunities, and respond to access barriers experienced for the people with PMLD and those that support them. [ FROM AUTHOR] Copyright of British Journal of Learning Disabilities is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full . (Copyright applies to all s.)

The impact of the COVID pandemic on working age adults with disability: Meta-analysis of evidence from four national surveys.

Concern has been expressed about the extent to which people with disabilities may be particularly vulnerable to negative impacts of the 2020 COVID-19 pandemic. However, to date little published research has attempted to characterise or quantify the risks faced by people with/without disabilities in relation to COVID-19. We sought to compare the impact of the early stages of the COVID-19 pandemic and associated government responses among working age adults with and without disabilities in the UK on; COVID-19 outcomes, health and wellbeing, employment and financial security, health behaviours, and conflict and trust. We undertook secondary analysis of data collected in four UK longitudinal surveys; the Millennium Cohort Study, Next Steps, the British Cohort Study and the National Child Development Study. Combining analyses across surveys with random effects meta-analysis, there was evidence that people with disabilities were significantly more likely to report having had COVID-19 and had significantly increased levels of stress, less exercise, poorer sleep patterns, more conflict with their partner and others in their local area, and to have less trust in the government. While most outcomes did not differ significantly between participants with and without disability, the findings suggest that in the early days of COVID-19 a detrimental impact emerges for those with disabilities which is more pronounced among older people with disabilities. Future research is needed to determine the longer-term impact of the pandemic.

Online social connections and Internet use among people with intellectual disabilities in the United Kingdom during the COVID-19 pandemic

Having a disability, in particular, an intellectual disability, is associated with Internet non-use. This article explores how people with intellectual disabilities used the Internet across the United Kingdom during the COVID-19 pandemic. In April to May 2021, 571 adults with intellectual disabilities were interviewed. Participants most commonly used the Internet for being with family and friends, social media or doing online activities with other people. People who lived with family were the most likely to use social media;people who lived with other people with intellectual disabilities were the least likely. People who self-reported as not lonely were more likely to use the Internet for online activities with others and play video games with others. Social connections were identified as the best thing about the Internet. Many participants chose not to identify a worst thing about Internet use, while others reported issues with technology, online harm and threats to well-being. [ FROM AUTHOR] Copyright of New Media & Society is the property of Sage Publications, Ltd. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full . (Copyright applies to all s.)

COVID-19 infection and outcomes in a population-based cohort of 17 203 adults with intellectual disabilities compared with the general population.

BACKGROUND: Adults with intellectual disabilities (ID) may be at higher risk of COVID-19 death. We compared COVID-19 infection, severe infection, mortality, case fatality and excess deaths, among adults with, and without, ID. METHODS: Adults with ID in Scotland's Census, 2011, and a 5% sample of other adults, were linked to COVID-19 test results, hospitalisation data and deaths (24 January 2020-15 August 2020). We report crude rates of COVID-19 infection, severe infection (hospitalisation/death), mortality, case fatality; age-standardised, sex-standardised and deprivation-standardised severe infection and mortality ratios; and annual all-cause mortality for 2020 and 2015-2019. FINDINGS: Successful linkage of 94.9% provided data on 17 203 adults with, and 188 634 without, ID. Adults with ID had more infection (905/100 000 vs 521/100 000); severe infection (538/100 000 vs 242/100 000); mortality (258/100 000 vs 116/100 000) and case fatality (30% vs 24%). Poorer outcomes remained after standardisation: standardised severe infection ratio 2.61 (95% CI 1.81 to 3.40) and mortality ratio 3.26 (95% CI 2.19 to 4.32). These were higher at ages 55-64: 7.39 (95% CI 3.88 to 10.91) and 19.05 (95% CI 9.07 to 29.02), respectively, and in men, and less deprived neighbourhoods. All-cause mortality was slightly higher in 2020 than 2015-2019 for people with ID: standardised mortality ratio 2.50 (95% CI 2.18 to 2.82) and 2.39 (95% CI 2.28 to 2.51), respectively. CONCLUSION: Adults with ID had more COVID-19 infections, and worse outcomes once infected, particularly adults under 65 years. Non-pharmaceutical interventions directed at formal and informal carers are essential to reduce transmission. All adults with ID should be prioritised for vaccination and boosters regardless of age.

Health and healthcare for people with disabilities in the UK during the COVID-19 pandemic.

BACKGROUND: While emerging evidence shows increased mortality from COVID-19 among people with disability, evidence regarding whether there are disability-related inequalities in health during the pandemic is lacking. OBJECTIVE: This study compares access to COVID-19 and non-COVID-19 related health care and mental health of people with and without disability. METHODS: Longitudinal analysis of 12,703 adults (16-64 years) who participated in W9 (2017-2019) and the April and/or May COVID-19 special surveys of the UK Understanding Society study. Descriptive analyses and Poisson regression (adjusted for age, gender, ethnicity and financial stress) were conducted to estimate associations between disability (measured at Wave 9) and a number of different COVID-19-related health and health care outcomes (COVID-19 symptoms, testing and hospitalisation), mental health and loneliness, and non-COVID-19 related health care (e.g. outpatient and inpatient hospital care, prescription medications). RESULTS: Results from the fully-adjusted regression models found that people with disability were more likely: to be hospitalised if symptomatic (adjusted PRR 3.0 95% 1.07-8.43); to experience current symptoms of psychological distress (PRR 1.15, 95% CI 1.05-1.26) and to report being lonely (PRR 1.75, 95% CI 1.46-2.09) compared to non-disabled people. People with disability reported much higher levels of comorbidities than people without disability. However, inability to access health care and treatment were similar. CONCLUSIONS: As the UK opens up, it is important that health care services and social policy address the poor mental health and social isolation of people with disability so that the inequalities occurring early in the pandemic do not become further entrenched.

The impact of disability on employment and financial security following the outbreak of the 2020 COVID-19 pandemic in the UK.

BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic may have a greater impact on people with disabilities than non-disabled people. Our aim was to compare the short-term impact of the 2020 COVID-19 pandemic and first lockdown on the employment and financial security of working age adults with and without disabilities in the UK. METHODS: Secondary analysis of data collected in Wave 9 and the special April, May and June COVID-19 monthly surveys of 'Understanding Society', the UK's main annual household panel study. RESULTS: During the first 3 months of the introduction of the COVID-19 lockdown in the UK, respondents with disability were more likely than their peers to be working reduced hours and experience higher levels of financial stress. These differences were attenuated, but not eliminated, when estimates were adjusted to take account of pre-lockdown financial status. CONCLUSIONS: Working age adults with disability were particularly disadvantaged by the financial impact of the COVID-19 lockdown in the UK. The UN Secretary-General António Guterres has stated the need for a disability-inclusive COVID-19 government response. The results of our analysis suggest that these pleas have either not been heeded, or if measures have been implemented, they have so far been ineffectual in the UK.

Improving health care for disabled people in COVID-19 and beyond: Lessons from Australia and England.

COVID-19 has exacerbated pre-existing difficulties children and adults with disability face accessing quality health care. Some people with disability are at greater risk of contracting COVID-19 because they require support for personal care and are unable to physically distance, e.g. those living in congregate settings. Additionally, some people with disability have health conditions that put them at higher risk of poor outcomes if they become infected. Despite this, governments have been slow to recognise, and respond to, the unique and diverse health care needs of people with disability during COVID-19. While some countries, including Australia, have improved access to high-quality health care for people with disability others, like England, have failed to support their citizens with disability. In this Commentary we describe the health care responses of England and Australia and make recommendations for rapidly improving health care for people with disability in the pandemic and beyond.

COVID-19: Implications for the Support of People with Social Care Needs in England.

This perspective examines the challenge posed by COVID-19 for social care services in England and describes responses to this challenge. People with social care needs experience increased risks of death and deteriorating physical and mental health with COVID-19. Social isolation introduced to reduce COVID-19 transmission may adversely affect well-being. While the need for social care rises, the ability of families and social care staff to provide support is reduced by illness and quarantine, implying reductions in staffing levels. Consequently, COVID-19 could seriously threaten care availability and quality. The government has sought volunteers to work in health and social care to help address the threat posed by staff shortages at a time of rising need, and the call has achieved an excellent response. The government has also removed some barriers to effective coordination between health and social care, while introducing measures to promote the financial viability of care providers. The pandemic presents unprecedented challenges that require well-co-coordinated responses across central and local government, health services, and non-government sectors.