When it comes to people with learning disabilities and COVID-19, the statistics are damning. In the UK, people with learning disabilities are at least four times more likely to die from the disease than the general population, according to a government report from November 2020, a death rate that the researchers estimate could in reality be as high as six times more likely.
This overall figure hides even greater disparities among different age groups. During the first lockdown, the death rate for people with learning disabilities aged between 18 and 30 was 30 times higher than those of their non-learning-disabled peers. Even more concerning: a report from the charity Mencap found that 80% of all deaths of people with learning disabilities in the past year were related to coronavirus.
The government report suggests some possible reasons for this. They cite some of the intrinsic challenges that come with living with a learning disability, such as having a higher risk of health conditions like diabetes, being more likely to live in group accommodation or care homes, finding it difficult to socially distance if living in the community and being dependent on home care for day-to-day support.
Another small study has found that risks appeared to be higher for those with moderate to profound learning disabilities and other conditions, including epilepsy, mental ill-health, Down’s syndrome and dementia.
But we would caution against relying on simple medical explanations, which could inadvertently perpetuate stereotypes about this group – that they are unwell, vulnerable and in need of “care”. Instead, we need a broader discussion about the causes of this deadly inequality.
We have to consider therefore, the way society views people who do not fit into a narrow view of “normal”, which defines what it is to be human as exclusively non-disabled. This way of thinking makes it harder to create a society that plans for the needs, choices and rights of all of its members.
Throughout the pandemic, we feel there has been a significant lack of consideration given to the needs of people with learning disabilities.
This was made clear in the case of Jo Whiley’s sister, Frances. In February, Jo, a broadcaster with the BBC, publicly questioned why she had been offered a COVID vaccine when her sister Frances, who has learning disabilities, had not. Following this, Frances contracted COVID-19 and spent several days in hospital where she became very unwell.
While Frances was in hospital, Jo was forced to turn to Twitter to ask for help with how to encourage her sister to wear an oxygen mask. It is shocking to us that these sort of issues were still arising one year into the pandemic, given the high numbers of people with learning difficulties who had contracted COVID and who would thus need oxygen like any other patient.
Frances has thankfully now been discharged from hospital and Jo’s public advocacy, alongside concerns raised by parents and campaign groups, has led the English government to move all people who are on a GP register for learning disabilities up the priority list for vaccination.
A history of health inequality
We may be in exceptional circumstances due to COVID-19, but concerns about the quality of care that people with learning disabilities receive are not new, nor are high death rates among this group.
In 2019, the NHS published a report investigating the deaths of more than 1,000 people with learning disabilities from 2016-2018. The report found that the median age of death for men with a learning disability was 60 compared to 83 for men in the general population. The median age of death for women with a learning disability was 59 compared to 86.
In 2007, a Mencap report, Death by Indifference had raised concerns about discriminatory attitudes to people with learning disabilities using health care services. In 2012, Mencap documented further significant concerns about the disproportionate numbers of deaths of patients with learning disabilities in hospitals. They argued that the NHS was continuing to fail these patients in terms of basic care, poor communication, delayed diagnosis, and poor adherence to the principles underpinning the Mental Capacity Act.
All this shows a distinct lack of progress, and that early deaths of people with learning disabilities are often unnecessary and avoidable. This is one possible explanation that should be considered when asking why they have a higher COVID death rate.
While celebrity-driven campaigns can make change happen, we need to make a long-term difference. This includes a commitment to listen to people with learning disabilities, seeing their lives as valuable and fulfilling like any other citizen, and working collaboratively to address social exclusion, poor healthcare provision and continued marginalisation beyond the pandemic.