15 May 2020

ARC England is alarmed by the figures for the deaths of people with learning disabilities (published by the Office for National Statistics (ONS) and released by the Care Quality Commission (CQC) in response to a request by the BBC) showing that between 10 April and 8 May 2020 the number of deaths reported across all settings where people with a learning disability and/or autism may live was up by 175% from 1,370 in the same period in 2019 to 3,765 in 2020. We feel this is totally unacceptable.

We also consider there to be a worrying lack of clarity within the statistics; the figures represent the number of deaths in services that are registered to provide support for people with a learning disability and/or autism, but these services may also be registered for other services and specialisms therefore  it is not clear which of the 3,765 deaths are those of people with a learning disability and/or autism. ARC has been lobbying over the past months to ensure that data collected is fit for purpose – so that it shows the true picture of who is at the mercy of this virus. The NHS data, released yesterday, is a start but with many gaps still evident.

Whilst we appreciate that the focus has been on settings where the most outbreaks and deaths are identified and recorded – care homes for older people, yet again it is very evident that other groups of people who access services that are also most at risk in this crisis are being ignored, highlighting continuing inequalities.

Lisa Lenton, ARC England Director, says:

“The lack of focus, data and testing of people with a learning disability and or autism is deeply concerning. Sadly, it was not surprising to hear in the BBC report (14 May) that the families felt this group of people were at the ‘back of the queue’. This is evidenced by the lack of COVID-19 testing available for working age people, many of whom are people with a learning disability or autism. Concerns over Do Not Resuscitate (DNR) orders automatically assumed in a number of places for people with a learning disability or autism is also unacceptable and disrespectful of people’s human rights – but these assumptions are happening.

“Historic systematic failure continues to impact people with a learning disability and autism and this must stop. The data needs to tell us why people may have died prematurely, the settings involved and if there were underlying health conditions. We need to have a proper analysis of the data in order for the right strategic actions to be taken.”

Notes for Editors

  1. The Association for Real Change is a leading umbrella body representing service providers in the learning disability sector. Our purpose is to improve the quality of life for people who have a learning disability and/or autism by supporting anyone who is involved in the planning or delivery of support and services.
  2. The Association for Real Change is committed to promoting best practice within the learning disability sector and we work with others such as the Department of Health, Skills for Care, Big Lottery Fund and Comic Relief through a range of projects.
  3. We provide a range of services including high quality information and resources, networking opportunities, learning disability training, qualifications, publications and DBS checks.

Lisa Lenton

England Director

Association for Real Change



Download ARC statement as a Word document