Members of Leep1 CIC's #AbilitiesNotDisabilities project

View an easy read version of this article here.

Across Great Britain, people with learning disabilities have been more likely to die from COVID-19 yet the response from governments in England, Scotland and Wales has failed to address these inequalities.

The latest Office of National Statistics (ONS) data showed that people with learning disabilities made up 5.8% of all deaths involving COVID-19 in England yet accounted for only 1.2% of the study population. In Scotland people with learning disabilities were found to be 3 times more likely to die from COVID-19 and, in Wales the rate of deaths involving COVID-19 is around 3 times to 8 times higher.

This disproportionate health impact is not a new issue for people with learning disabilities. Before the pandemic, the median life expectancy of people with learning disabilities was 27 years less for women and 23 years less for men than people without learning disabilities.

The Scottish Learning Disabilities Observatory found that outside of COVID-19 related deaths, adults with learning disabilities are twice as likely to die from preventable illness. In the Welsh Government’s report into the lives of people with learning disabilities they highlighted that, “One of the most disturbing parts of the expert evidence gathered was concerning health services and the negative impacts of getting it wrong which at worst could mean a number of avoidable and premature deaths.”

Children and young people from minority ethnic groups were also overrepresented in deaths of people with learning disabilities. Of the deaths of children (aged 4-17 years), 42% were from minority ethnic groups; of 18-24 year olds the proportion was 26%, and of adults aged 25 years and over it was 7%.

The higher mortality risk from COVID-19 clearly amplifies the ongoing failure to understand and address discrimination towards people with learning disabilities. In fact the Welsh Government found in their own report in 2018 that the data collected on people with learning disabilities is recognised as being poor in Wales.

In February last year Care England accused the government of failing people with learning disabilities and autism after it was revealed that thousands of adults needing specialist accommodation were forced to wait for months in hospital beds or inappropriate assessment centres.

The Learning Disability Mortality Review (LeDeR) 2019 highlighted concerns raised about the use of the term ‘learning disabilities’ being given as rationale for use of a ‘do not attempt cardiopulmonary resuscitation (DNACR) order’. Of 897 deaths reviewed in 2018 where data was available about DNACPR orders, 69% had such an order.

In 2013, The Confidential Inquiry into deaths of people with learning disabilities in parts of England, 37% of deaths were found to be avoidable dependent on the level of good quality care available, this compared with 9% of deaths of people without learning disabilities.

Entrenched discrimination and a lack of understanding contribute to lower life expectancy for people with learning disabilities. It is, sadly, no surprise that people with learning disabilities have a mortality rate of up to 6 times higher in England and 8 times higher in Wales than the rest of the population during COVID-19.

The full extent to which people with learning disabilities have been impacted during COVID-19 has not even been adequately measured. The Women and Equalities Committee said in September 2020 about the suspension of the Care Act 2014: “We found detailed information about the number and groups of disabled people, and the types of services, affected by Care Act easements impossible to find.”

Despite existing knowledge of health inequalities before COVID-19 there are many ways in that the specific health care needs of people with learning disabilities have not been given due regard.

In the height of the pandemic the majority of people with learning disabilities living outside of care homes werenot prioritised for testing. Only people with a ‘severe or profound learning disability’ have been placed in a higher priority category for the COVID-19 vaccination but people with learning disabilities who do not fall under this category will be prioritised at the same rate as the general population.

It has also recently been revealed that ‘DNACR’ orders have been used during the COVID-19 pandemic for people with learning disabilities despite widespread concern about the practice being raised by health organisations.

It is unacceptable that the distinct evidence relating to disproportionate health inequalities for people with learning disabilities has not been adequately addressed and has been magnified during the pandemic. Now is the time for the governments of all three nations to demonstrate their commitment to people with learning disabilities and address the significant discrimination and service failures that people with learning disabilities face.

*Update: On Wednesday 24 February it was announced that all adults with learning disabilities will be offered a COVID-19 vaccination.

Our Active Communities funded partners shared their views on the challenges facing people with learning disabilities during COVID-19:

"Lewisham Speaking Up strives to give people with learning disabilities in Lewisham a stronger voice through advocacy services. During the pandemic we have facilitated a weekly speaking up group on Zoom. People who attend have talked about the vaccine and the unfairness of people with learning disabilities dying prematurely because of not being prioritised in a high risk group. Kali, one of our Health Ambassadors with a learning disability said, 'people with learning disabilities were definitely failed because they didn't get the vaccine straight away." - William Davies, Director of Lewisham Speaking Up

“It saddens me that so many learning-disabled lives were lost at the beginning of the pandemic and the figures have risen in the second wave. Learning disabled adults are often forgotten about in many aspects of their lives, the first wave of the pandemic the number of deaths were not included in government figures and even now they are lower on the list of priorities for the vaccine. Many have had to shield and are still continuing to shield, having a huge impact on their mental health, many are still unconnected from the outside world due to lack of digital skills, not having the tech or lack of money to buy it. As a society things need to change so that learning-disabled adults are included in all conversations, in a world that is diverse, equal and accessibility is no longer an issue.” – Mandy Haigh, Project Manager at Leeds People First

"The pandemic is highlighting the inequalities which people with learning disabilities already face... People who are less able to communicate their needs and maybe even less self-aware about what their bodies or understand when things need more urgent action are liable to not get the treatment they need and as a group suffer from greater mortality rates.” - CoActive Arts