2020 and the first half of 2021 will be long remembered as the time of the devastating global Covd-19 pandemic, which affected the lives of practically every human on the planet. Countries across the world implemented lockdowns, travel restrictions and other curbs on everyday “normal” life, with the impact of these measures felt by everybody. However, a significant number of research projects and reports have highlighted that this impact was particularly great for people with Learning Disabilities or Autism.
In the U.K., there is a real sense that people with learning disabilities and autism were overlooked by the government during the pandemic, with drastic consequences. A Public Health England study, concluded that people learning disabilities and autism suffered a higher death rate from Covid-19, over 4 times higher than the general population. This figure may be 6.3 times higher when various reporting factors are considered. Additionally, deaths were spread more widely across age and sex demographics, likely reflecting wider age ranges in residential care settings.
Learning Disabilities and Autism often affect an individual’s ability to understand new or complex information such as details about self-isolation, hygiene protocols and lockdown rules. A viral pandemic by its very nature involves a lot of medical and technical language, which is not particularly accessible to the wider population, and even less so to those with different levels of comprehension or means of communication. A knock-on effect of these comprehension problems would also make it more difficult for people with a learning disability or autism to recognise symptoms, follow advice, and communicate this with those supporting them.
Mental Health Impact
However, the impact was more far reaching than avoiding or dealing with contracting the virus itself. A lack of, or reduced, contact with formal support, family and friends can make managing everyday tasks and skills more difficult, such as managing money or personal care – where they would normally rely on support. Many formal support services were significantly reduced or withdrawn altogether during the first lockdown in March 2020, sometimes without any warning.
Changes in routine can have a significant effect on people with learning disabilities and autism. With many individuals being socially isolated due to the requirement to shield, anxiety and distress levels began to increase. Where services were available, staff wearing unfamiliar PPE, hiding part of their face could contribute further to the distress and anxiety, as well as affecting the quality of in-person communication. Evidence is continually emerging of the collective and individual impact of the pandemic on mental health globally. It is well recognised that people with learning disabilities or autism are already more likely to suffer with mental health problems, which are often harder to diagnose. They are also more likely to struggle to understand and process grief, further magnified by drastic reduction in available support.
Social Care Providers and Circle-of-Support
This impact has also been felt across the wider social care sector. The disaster in U.K. care homes was widely reported, with various surveys and studies within social care highlighting what many providers, managers and staff felt. The consensus was that the government response and communication was poor, magnifying chronic issues within the sector such as a greater focus on the NHS and insufficient funding, along with inadequate planning and guidance.
There was also a significant impact on the social care workforce, with exhaustion, physical, and mental health problems being widespread. Social care workers faced among the highest mortality rates by occupation during the first phase of the pandemic and sickness absence rates more than doubled between February and October 2020.
The operational impact on formal services had consequences for informal and family carers. A survey carried out by Sense found that families of people with learning disabilities or autism felt they “had been forgotten” and “left without sufficient support, information and communication about services available”.
Looking to the Future
As we tentatively emerge from the past 18 months of the pandemic, what can be done to prevent such a dramatic and damaging impact on people with learning disabilities and autism happening again? How can social care providers build resilience and contingencies? The pandemic has revealed some positives, against the odds. There has been an increased interest in social care roles and careers along with countless stories of communities coming together. Many local initiatives and wider digital communication through platforms such as Zoom are being utilised to connect individuals and groups.
Within social care, the wider public have been made more aware of the invaluable work of the sector and the passionate, dedicated workforce that keeps it going. We have also seen the rapid adoption of digitisation and technological solutions in planning and monitoring care and support. The sector now needs to carry this momentum forward, building resilience and contingencies into redesigned systems, processes, and training. People with learning disabilities and autism need to be put at the heart of any future developments, adopting a more person-centred, preventative approaches supported and enhanced by technology.