What time do you go to bed? We all long for an early night in theory, but then find ourselves watching telly, reading a book, pottering around the garden, meeting up with friends.
It worries me how readily we can accept extremely early bedtimes for adults who need care, whether in their own homes or in a residential setting. It’s hard to find staff to work unsocial hours, when it takes them away from their own families or friends, and I’m aware of the need for providers to cut costs, and how expensive, relatively, it is to employ staff at weekends and in the evenings.
But we do need to recognise it’s not a normal life for an adult, even if they’re living with a learning disability or brain injury and have care needs, to be ‘put to bed’ around 8:30 in the evening. It can hardly come as a surprise when someone is then wakeful and may be distressed during the night.
‘Should I stay or should I go?’
A charity called Staying up Late organised a letter to The Guardian newspaper during the summer https://www.theguardian.com/society/2021/jun/17/adults-with-learning-disabilities-should-be-able-to-go-out-and-stay-up-late .
They quoted the Big Bedtime Audit https://wp.lancs.ac.uk/cedr/2018/05/16/the-big-bedtime-audit-evening-routines-in-the-community/ which found, ‘At 8.30pm on a typical Friday evening, 69% of people with learning disabilities were either in bed or ready for bed. Only 7% were actually out.’
Social workers explored the evening routines of people with learning disabilities in supported living settings: they found that an early bedtime, around 8:30, was very common. This research led to a provocative blog ‘Should I stay or should I go?’
The blogger is Paul Richards, part of a punk band with learning disabled members. He got fed up with his audience all leaving around the time the band came on stage: not, as he hastened to add, because the band was rubbish, but because the support workers who’d enabled people to attend the gig had noticed the time and wanted to get back before the end of their shift. So, he created a system of ‘gig buddies’, volunteers who would enjoy developing a friendship with someone whose interests they shared, and going together. For more on how it works, see the website and his blog, it’s a great model to follow.
A one-bed flat can be an institution
It isn’t just outings. As Paul says, ‘it’s easy to turn a one bed flat into an institution if we create a series of rules and systems which someone needs to live by’. He gives the example of someone whose support worker insisted he always did his laundry on a Wednesday morning, rather than wait until he had a full load. It probably made good sense to the support worker – ‘that’s the activities for one morning a week sorted, and it makes sure we don’t forget his washing’ – but you can imagine how institutionalised it made the man feel.
The thrust of the Mental Capacity Act is to empower people. This can be done by recognising when they do have capacity to make their own choices, but it can also be done by enabling people with disabilities to live as normal an adult life as possible. When you recognise that someone can learn, with support, to enjoy a night out and make friends, or to decide when the laundry situation is critical, you are directly empowering this person.
No talking to the neighbours
Not long ago, I went to visit a supported living setting that consisted of two semi-detached houses. There was a house rule forbidding residents from each house to talk over the back fence: I saw the rule written up, with an easy-read version, in each house. A young woman living in one house said it made her sad, since her cousin lived next door, but she couldn’t say hello to him from one garden to the other. Why was the rule there? It turned out that, quite a few years ago, there were a couple of residents who used to row noisily over the fence and disturb the neighbourhood. They’d both moved on some time back but the rule had survived, unquestioned. ‘That’s just how we do it here.’
Commissioning for flexible care
The letter to the Guardian was followed up by asking local authorities if they were commissioning flexible services to include evenings out for people who wanted them, and many responded positively. Changing towards more flexible planning might even persuade more people to work in social care: I don’t think it’s just me who would find it really rewarding to accompany a young person with a disability on a fun evening out! Empowering people to enjoy life is a real win-win.
I can’t do better than end with another bit of Paul’s blog:
‘If people really choose to go to bed at 8.30pm that obviously is totally their choice but it’s too simplistic, and convenient, to say that without fully considering the context that people live in, the systems, rules and practices of staff that may mean there is not really any other choice.
How can we support people with learning disabilities to be citizens, active in their communities, if they’re denied the right to take part in the social activities that many of us take for granted?
At the heart of everything we do as a charity is the concept of supporting people to make real choices about the way they live their lives. Even though we’re called ‘Stay Up Late’ we don’t actually mind what time people go to bed, as long as they really are making a choice about it. We just thought that ‘Choice and Personalisation the Charity’ didn’t have such a ring to it as Stay Up Late!!’