News Story

Hidden crisis in social care for working-age disabled adults

May 15, 2020

“There is a hidden crisis in social care for disabled adults risking serious harm for vulnerable people” says Charity Director representing over 70 organisations

– Social care at risk of becoming two-tier system, as working-age disabled adults in care homes are not being prioritised for coronavirus testing

 – New CQC data appears to suggest almost twice the usual number of deaths in care homes that serve autistic people and people with a learning disability

– Care and Support Alliance fears that without urgent Government action, more disabled people could be at serious risk during the coronavirus outbreak

The Care and Support Alliance (CSA), an alliance of over 70 charities across the UK, are deeply concerned that disabled adults in social care are being forgotten during the coronavirus outbreak.

There is a hidden crisis in social care for disabled adults, because a number of the measures to tackle the coronavirus leaves many of the people we support out. The alliance is speaking out as it has become clear that despite the Government’s promise in late April to test all care home residents, disabled adults do not have equal access.

The Government has now developed a priority testing programme for older people (over 65s) and people with dementia. The CSA is concerned this is leading to a two-tier system, and is calling for everyone who needs social care, regardless of age, to be prioritised for testing. This means testing people who get support in their own homes, in supported living as well as in care homes – making sure that no one who needs support is left out.

The reality right now is that thousands could be left without crucial tests. Without urgent action, the CSA fears the virus will continue to spread quickly in settings for working-age people and that many more could die. Fears about this are particularly high following the publication of data from the Care Quality Commission yesterday, which indicates a 175% increase in unexpected deaths during the period 10 April – 8 May 2020 in places where people with learning disabilities and/or autism may live against the same period last year.

This underlines the urgent need to make sure everyone in social care can be immediately tested, if they start showing the symptoms of coronavirus.

Jackie O’Sullivan, Co-Chair at the CSA and Director of Communications at Mencap, said:
 “It is clear there’s a hidden crisis in social care for disabled adults risking serious harm for vulnerable people.  Every day, we hear from hundreds of disabled people and their families who can’t get tested and don’t have the right support to stay safe. And despite the Government effort on testing, this is not getting any better.

“Given the scale of the crisis we know is unfolding, we need to make sure everyone who needs a test gets one. We know this is crucial in stopping infections spiralling and preventing deaths.

“Emerging data from the CQC seems to show there are almost twice the usual number of deaths in care homes that service autistic people and people with a learning disability – a major warning sign. Without the right measures this will only get worse.

“Some of this stems from a fundamental lack of understanding about how the system works: 50% of the social care budget goes to working age adults – it’s not just ‘care homes’.  The Government must tackle this now to avoid a catastrophe, and promise to roll out priority testing for all working-age disabled adults, no matter what type of social care support they get. The Government cannot wait any longer.”

Case study: A support worker who works for Mencap describes the challenges they have faced getting the disabled person they support tested.

Following guidance from Public Health England we were directed to our local authority to apply for testing. On applying for testing with them we were informed that testing was for staff or their family members only and not for the people that they supported.

This did not seem to be the correct guidance that was be given by the local authority so we decided to challenge this and go through the Government’s website to see if we could get the person we support tested. The guidance from the Government’s website was that if we got confirmation from NHS 111 that the person we support needed a test then a test would be provided. Confirmation from 111 was given and a test was booked.

The nearest test available was over 30 miles away, despite there being three test sites in the immediate location to the person we support. This posed serious transportation problems in getting to the site without breaking social distancing rules and putting the person we support and staff at more risk. We managed to overcome this by borrowing a vehicle that was configured in a way that allowed both travellers to meet the two-meter social distancing guidelines. This posed a serious risk to the person we support’s mental health and wellbeing. This makes us question if there was not a more suitable option available that was not given to us?

At the test site the person we support was informed that he would have to perform the test without help from his support worker. This made it very difficult for him, but he tried his best to follow the testers guidance and return a sample to them.

When the test results were sent back to the person we support the result was “inconclusive” and it was recommended that he have another test. For the second test we were able to obtain one of the previously unavailable “home tests”, and with support from his support worker he managed to complete the test and send it back. This test has now come back positive and he is again in self-isolation.

At every stage of this pandemic we have had to question the advice being given on the “helplines” and study every page and update on guidance to get the answers we have required.