Coronavirus tests denied to people with learning disabilities despite 175% rise in their deaths

COVID-19 tests are not being given to people with learning disabilities living in residential care, a care home manager has told carehome.co.uk.

While people aged over 65 are entitled to be tested for COVID-19, care home residents with a learning disability are not automatically eligible for tests.

Government guidance published on 15 April (and updated 14 May) clearly states 'At the moment, you can only get tests if your care home looks after older people or people with dementia'.

Care homes with a majority of residents living with learning disabilities are being denied the chance to order coronavirus testing kits on the government’s new online portal for care homes.

Care home doesn't meet the criteria

Mark Topps manages Little Wakering House in Southend-on-Sea which is a care home for 13 residents with autism and learning disabilities (some of whom also have dementia).

Mr Topps told carehome.co.uk that he and other care home managers responsible for homes for people with learning disabilities had been unable to book any tests for staff or residents via the government's new online portal.

“When I put in my location ID, the portal tells me I can’t progress any further and I don’t meet the criteria. The same thing has happened for other care home managers running homes for people with learning disabilities.

“I called the portal’s helpline number and I was told that at the moment they are only testing people aged over 65 in care homes and people with dementia.”

“I’ve had phone calls from families saying the government is saying there is tests for care homes. It is a question of my word against the government. They wonder why would the government lie?

“It’s completely and utterly shocking that in 2020 people with disabilities are being discriminated against by the government.”

175% rise in deaths of people with learning disabilities and autism

New figures reveal a 175 per cent rise in the number of unexpected deaths of people with learning disabilities and autism from 10 April - 8 May, when compared to the same period last year.

The Care Quality Commission published figures that show a large rise in unexpected deaths in places where people with learning disabilities and autism live - 3,765 deaths when compared to 1,370 in the same period last year.

"We don’t know what’s the cause of all the unexpected deaths in places where people with learning disabilities live because they are not being tested," added Mr Topps.

"I think the huge rise in deaths at this time has to be because of the coronavirus."

The care home manager, whose staff face up to a 70 mile-round trip by car to get to a testing facility, has launched an online petition for all frontline workers to be tested. The petition has so far been signed by over 300,000 people.

Disability rights campaigners have been shocked by the “appalling” delay in publishing any coronavirus death statistics for people with disabilities and the government’s decision not to give automatic testing for those with a learning disability or autism.

Dr Rhidian Hughes is chief executive of the Voluntary Organisations Disability Group (VODG), which represents voluntary sector organisations supporting a million disabled people.

He said: “We are two months into the pandemic response and that it has taken this long for CQC data to come to light showing the potential impact of COVID-19 on people with a learning disability is appalling.

“This highlights structural inequities at work.

“Added to this is the fact that the government has introduced automatic testing care homes for people aged over 65 s yet someone with a learning disability and/or autism living in a care home environment is not able to access testing – it’s simply unacceptable.

“We cannot continue to have a situation whereby disability services are continually neglected from government’s policy responses.

“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.”

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