This is a fast-moving issue and should be read as correct at the date of publication (03.07.20).
New data shows a significant increase in deaths of people with a learning disability as a result of Covid-19.
Until 5 June 2020, the Government’s criteria for care home testing excluded those for people with a learning disability. The Coronavirus Act 2020 has also relaxed local authority duties for care and support needs assessments. The charity Mencap concluded that during the coronavirus outbreak, “people with a learning disability continue to be forgotten.”
This Insight looks at evidence of the impact of coronavirus on people with a learning disability in England.
What does the data show?
On 2 June 2020, the Care Quality Commission (CQC) published data. The new figures included deaths reported by those who provide care for people with a learning disability and/or autism. This includes adult social care, independent hospitals and community care.
Between 10 April and 15 May 2020, 386 people who were receiving care from learning disability and/or autism services died. In the same period last year 165 people died. This represents a 134% increase.
Of the 386 people who died this year, 206 were as a result of suspected or confirmed Covid-19.
Can people with a learning disability access testing?
Anyone who has symptoms of Covid-19 in England may be tested. But there are concerns about access to testing for people with learning disabilities in care homes.
Care homes can order testing kits for their residents and staff. The Government said that they were offering testing to staff and residents in every care home in England. However, until 5 June 2020 these homes could only order testing kits if they were looking after people aged over 65 or people with dementia. This left care homes for younger people with learning disabilities without access to testing kits.
The CQC said its data on increased deaths (published 2 June) should be considered when making decisions on testing priorities:
We already know that people with a learning disability are at an increased risk of respiratory illnesses, meaning that access to testing could be key to reducing infection and saving lives.
These figures also show that the impact on this group of people is being felt at a younger age range than in the wider population – something that should be considered in decisions on testing of people of working age with a learning disability.
We’ve been telling the Government for weeks that it is putting people with a learning disability at risk by not giving them priority testing; it’s time the Government acted to make sure that everyone who needs social care, regardless of their age, disability or care setting, is prioritised for testing. This is a matter of life or death, yet people with a learning disability continue to be forgotten.
The CQC is also calling for priority testing to be extended to people with learning disabilities who don’t live in care homes, saying that the majority live in the community with support.
On 3 July, the Government announced the roll out of regular retesting for care home residents and staff. Residents will be given coronavirus tests monthly, while staff will be given coronavirus tests every week.
However, repeat testing will initially be only be available for care homes looking after over 65s or those with dementia. This will again leave younger people with learning disabilities without access to regular testing.
The Government aims to extend repeat testing to all care homes for working age adults in August.
What about social care assessments?
Under the Coronavirus Act 2020 the obligations on local authorities under the Care Act 2014 have been relaxed. In particular, local authorities don’t have to carry out care and support needs assessments. The relaxation of local authority obligations are referred to as ‘Care Act easements’. Local authorities in England and Wales may instead prioritise the most urgent and acute needs.
Mencap said this might result in “more people with a learning disability falling through the gap when it comes to accessing vital social care support.”
However, as of 1 June 2020, only two local authorities were using the easements.
Since 26 March 2020, new complaints to the Local Government and Social Care Ombudsman have also been suspended.
Weekly data on deaths of patients with a learning disability where Covid-19 is suspected or confirmed as the cause of death is being reported to NHS England.
On 8 June, the Government created a social care taskforce to support the care sector and prevent further transmission.
The Government is also working with the Care Quality Commission and Think Local, Act Personal to understand the impact on disabled people and carers, the changes to Care Act 2014 duties and are giving additional funding to learning disability charities.
This insight was updated on 3 July 2020 to reflect changes to repeat testing in care homes.
Mental health, learning disabilities and autism, NHS England, Guidance.
Coronavirus: health and social care key issues and sources, House of Commons Library.
About the author: Elizabeth Parkin is a researcher at the House of Commons Library specialising in health policy.