A new survey of family carers by Mencap has revealed that seven in ten people with a learning disability had their social care cut when they needed it most, leaving many stuck in lockdown.
The charity asked 1,069 people across the UK about their experiences of caring for someone with a learning disability during the crisis. In response, over two third said their loved one’s needs had increased during the coronavirus pandemic, while four in five have had no choice but to increase the amount of care and support that they offer.
Left in lockdown
Mencap has warned that cuts to day services, personal care in the home and respite for carers have had a devastating impact on people with a learning disability and their families. This has left them in lockdown despite the easing of official restrictions.
The survey reveals that a lack of social care support during this crisis has negatively impacted people with a learning disability in a number of ways.
This includes their mental health, relationships, physical health and independence as noted by family carers who completed the survey.
One family carer said the family hadn’t left the house since March, while another who is shielding said that their loved one can only be supported to go out for a daily walk at night.
Mencap has heard from families whose loved ones with a learning disability were previously independent and confident but, since their support has been taken away, have lost their life skills.
A mother who’s 22-year-old son has a learning disability, says: “He was at residential college supported by an active programme of learning and life skills. This has stopped since mid-March. He has regressed, he has become subdued and is ripping his clothes and being destructive.”
Caring for someone around the clock while day services are closed and respite hours are cut has taken a large toll on the wellbeing of family carers. Over half of family carers said that they have struggled to cope with supporting their loved one during the COVID-19 pandemic and three quarters say the situation has been detrimental to their own mental and physical health, as well as relationships.
A mother to a 25-year-old who has a learning disability, says: “I am here alone giving 24-hour care to someone who cannot be left. Behavioural issues have been terrible. I had to choose to keep him safe rather than going for a wee, I had to wee on the floor. He was safe though.”
Many families fear that due to limits on spending, local councils will have no choice but to make further cuts as lockdown eases.
“She is reassessed every year. I am terrified they will say that I managed without support and withdraw services in the future,” explains a foster parent to a 36-year-old with complex needs.
Figures from a series of Freedom of Information Requests to Local Authorities in England, demonstrate the extent of financial pressures in social care for people with a learning disability even before coronavirus hit.
They show at least 2,459 working-age adults with a learning disability had the support hours in their care package reduced in 2018/19. Mencap estimates that, factoring in all local authorities, this could have been over 7,000 people – equating to around one in 20 people with a learning disability who receive social care.
Edel Harris, chief executive of the learning disability charity Mencap, says: “I am really shaken by the results of this survey. We knew it was bad, but no one could hear these stories without feeling ashamed to be part of a society that allows this to go on.
“Social care has had decades of under-investment, and we have been warning about the system being at breaking point for years – but here are clear signs that the system has broken and people with a learning disability and their families are paying the price. Mencap will not stand by and allow this to happen.
“Social care needs significant investment now and a bold plan for reform in the future. People with a learning disability and their families must not be left behind in lockdown.”
According to the Lords Economic Affairs Committee report, £8 billion investment in social care in England is needed to restore adequate levels of quality and access to what it was a decade ago.
Although this is the case, local councils in England face at least a £6.6bn increase in social care costs due to coronavirus according to the Local Government Association and the Association of Directors of Adults Social Services.
In response to the survey and freedom of information findings, Mencap is launching a petition calling on the Treasury to invest in social care. It is also calling for major reform to futureproof the sector and ensure that the individual needs of people with a learning disability are met.