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Social care cuts for people with learning disability leave families stuck in lockdown

Seven in ten (69%) people with a learning disability had social care cuts when they needed it most, leaving many stuck in lockdown according to a survey of family carers by Mencap.

The charity asked 1,069 people across the UK about their experiences of caring for someone with a learning disability during the crisis.2 Over two thirds (67%) said their loved one’s needs have increased during the COVID-19 pandemic3 while four in five (79%) have had no choice but to increase the amount of care and support they offer.

Mencap – the UK’s leading learning disability charity – warns 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, leaving them still in lockdown despite the easing of official restrictions. 

Devastating impact of lockdown on people with a learning disability

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, including their mental health (69%), relationships (73%), physical health (54%) and independence (67%), according to family carers.5 

Social care cuts for people with learning disability

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’. 

“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.” Mother, 57, to 22-year-old son with a learning disability

“We have worked so hard for a number of years to support my daughter to join in group activities. Due to COVID-19, she has been confused and [is] completely shutting down [and] refusing to communicate.” Mother, 50, to 15 year-old-daughter with a learning disability
Family carers pushed to the brink

Caring for someone around the clock while day services are closed and respite hours are cut has taken a shocking toll on the wellbeing of family carers. Over half (52%) of family carers said that they have struggled to cope with supporting their loved one during the COVID-19 pandemic.6 Three quarters say the situation has been detrimental to their own mental health (75%), relationships (60%) and their physical health (61%).7

“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.” Mother, 54, to 25-year-old son with a learning disability

“I am caring for a very challenging and strong individual for more than 100 hours per week and have had very little sleep. I am worn out and exhausted, my son is fully grown with the strength of ten men. It has left me feeling depressed and forgotten.” Mother, 53, to 26-year-old son with complex needs

Many families fear that cash-strapped local councils will have no choice but to make further cuts as lockdown eases. Almost three quarters (72%) of family carers surveyed are worried that there would be more cuts to care packages to come8, with some reporting that their loved ones’ day support services have already been forced to close for good during lockdown. 

“She is reassessed every year. I am terrified they will say that I managed without support and withdraw services in the future.” Foster parent, 61, to 36-year-old with complex needs

Figures from a series of Freedom of Information Requests to Local Authorities in England, released today, 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. But the charity 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. 9

Edel Harris, Chief Executive of the learning disability charity Mencap, said: “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.”

An £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 according to the Lords Economic Affairs Committee report.10  And yet 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.11

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:

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