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Lockdown Has Brought Families Of Learning Disabled People To Their Knees

August 12, 2020

As Britain comes slowly out of lockdown, many of us are enjoying getting back to doing the things we’ve missed so much over the past few months: spending more time with loved ones, barbecues in the garden, hitting the shops, perhaps even taking a trip to the coast.

But for many families of people with a learning disability, cuts to their social care support mean lockdown is a continuing, gruelling reality, with no end in sight.

The social care sector was already fragile and overstretched long before the pandemic hit, but new data released by Mencap shows that further cuts during the coronavirus crisis have had a disastrous impact on people with a learning disability and their families, leaving many feeling forgotten and abandoned.

We surveyed more than 1,000 family members and carers of people with a learning disability in the UK; 69% reported further cuts to their social care support during lockdown, with more than half saying they have struggled to cope. Many are feeling isolated and let down by the system. They’ve told us about the devastating impact of lockdown on their loved ones as they watch them losing some life skills, which impacts negatively on the independence they have worked so hard to gain. In extreme cases, we have heard about people with learning disabilities shutting down completely and refusing to communicate.

One mother told us that her son can’t be left alone for even two minutes for her to visit the toilet. In an effort to keep him safe, she has resorted to urinating on the floor. Another said she spends more than 100 hours a week caring for her son who is physically very strong and can display challenging behaviour. She has no support. She is sleep-deprived and exhausted, having been left to cope completely on her own.

The provision of vital social care allows many people with a learning disability to live independent lives. It gives family carers the support they desperately need. For some people, this may mean receiving round-the-clock personal care in their home.

But for many, it is about providing a lifeline to take part in meaningful activities. Day services are run locally across the country to provide social opportunities for people with a learning disability. They combat loneliness, help develop important life skills, hone talents and offer friendship in a safe and trusted environment. Importantly, they give people a chance to do the things they enjoy – something we all missed during lockdown.

Families providing round-the-clock care and buckling under the pressure also rely on this support for much-needed respite from their caring duties.

Inevitably, some services have had to close to keep people safe. We at Mencap worked closely with local authorities and activity groups to move as many as possible online at the height of the crisis: virtual quizzes, digital discos – you name it, we’ve done it.

Slowly, face to face options are beginning to reopen, but provision will not be anywhere near what it was at the beginning of the year.

There is personal protective equipment (PPE) to consider, extra cleaning of premises, the requirement for more frequent activities with smaller groups. The government has offered detailed guidance for pubs, hairdressers and nail salons, but omitted these settings completely, so it’s a struggle to work out the safest way to operate.

When I listen to the heartbreaking stories of families who have been left on their knees by this crisis, I ask myself what sort of society we want to live in.

It shouldn’t have taken a worldwide pandemic to bring the UK’s social care crisis to national attention – but it has. If the system was struggling before, it is truly broken now. This crisis has resulted in some people’s needs increasing exponentially, while costs soar due to increased safety measures such as the provision of PPE – and yet the cuts keep coming.

We have waited a long time to hear about the prime minister’s promised social care reform. As important as the issues are relating to older people are and how as a society we provide for better care in old age, almost half of the social care budget in the UK is spent on people of working age, a fair proportion of whom have a learning disability.

The social care sector needs significant investment and a bold plan for reform to help prepare for the months and years to come.

The people and communities we serve and our colleagues who have been the heroes throughout this crisis deserve better.

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