Care groups have called for greater clarity on how the coronavirus is impacting people with a learning disability and/or autism after the CQC reported a 175% rise in deaths.
Figures released by the CQC last week, in response to a BBC request, revealed that the provisional number of deaths across all settings where people with a learning disability and/or autism may live rose to 3,765 compared with 1,370 in the same year-earlier period.
But the figures came with the caveat that the real figures could be as much as “40 times smaller” once the deaths of people receiving other types of care in these settings is separated out.
The CQC added it was working on “detailed analysis” to provide a more accurate understanding of the impact of coronavirus on autistic people and/or people with a learning disability.
Lisa Lenton, chair of the Care Provider Alliance (CPA), said: “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 today that it was 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.”
Dr Rhidian Hughes, chief executive of the Voluntary Organisations Disability Group (VODG) said the government needs to be more inclusive of all groups using social care services, including people with a learning disability.
“It is dismaying that the government’s response continues to overlook social care in its entirety – particularly the needs, rights and entitlements of disabled people. We cannot continue to have a situation whereby disability services are continually neglected from government’s policy responses,” he added.
“Every death must count and we continue to call for the open and transparent release of data on the deaths of people with a learning disability from COVID-19. We must measure all lives lost. It’s only through the consistent routine reporting and publication of data that the necessary intelligence to help inform current and future service responses can be achieved.”