By Paul Richards, Stay up Late
At the recent Social Care Future event in Manchester we heard and thought a lot about ‘framing’, or how we tell the story of what needs to happen to transform what we call social care. The narrative in the media is generally that social care is in crisis and heading for impending doom. This sort of framing only serves to create a sense of panic and helplessness, the result being we do nothing, because there is nothing more we can do. We see parallels with the way the media covers climate change too.
If we reframe the stories that we want to tell then we can demonstrate that change, and radical change is possible. That was the inspiration behind Stay Up Late’s (un)Ordinary Conference which was held in London in Spring 2019.
Firstly, the conference was about giving a platform to people with a lived experience and all the speakers and facilitators were people with learning disabilities and/or autism. We didn’t even have one token social care professional up on stage!
We did have an audience made up mostly of social care professionals though as we wanted them to go back to work and make changes based on what they were going to hear on the day.
The second main idea behind the conference was that it’s really easy to be negative and talk endlessly about all that is wrong with the world, but again that does nothing more than create a sense of helplessness and despondency. We wanted to share positive stories of how people with lived experience had managed to live the lives they want.
We heard stories like:
Amber – who has a job working for an arts organisation in Manchester
Phil – who ditched his old support and found someone who would support him to achieve his dream of marrying his partner
Fiifi – who was supported to rebuild his relationship with his father through the grief of losing his mum
Laura – who talked about the joys of being a mum
Simon – who organises late night karaoke sessions with his mates in mainstream pubs in Cardiff
Ben – a young man who goes to raves along with other young people, based around their love of the same music scene.
All these stories posed the same over-arching question:
‘how can we make ‘ordinary’ lives more of an ordinary thing for people with learning disabilities?’
At the conference we also launched our ‘Manifesto for and Ordinary Life’. It’s a straightforward document that fits on a postcard and echoes the same aims of Social Care Future. It was co-produced with people with learning disabilities and reminds us that we all probably generally want similar things in our lives; to be loved, to be valued, to be welcome in our communities, to see our friends when we want to and not be governed by inflexible rules.
Nobody who contributed to writing the manifesto ever told us about the sort of service specification type place that they wanted to live in. They just wanted a good life for themselves.
It has got me thinking how there seems to often be a big gap between what is commissioned and what people really want in their lives.
One example of this is how services are commissioned that enable flexible support. Our experience is that this just isn’t working at the moment. Go to any club night aimed at people with learning disabilities and you will probably see the same thing happen. The dance floor will be rammed at 8.30pm by 9pm the place will be empty. Why? Because support staff can’t work late and need to go and do ‘the handover’.
There are of course support provider out there who totally know how to provide flexible support and in my experience those are the providers who don’t instinctively just provide flexible support around evenings but also provide great support in other ways. They have a good culture around supporting people in making choices about their lives and understanding what is important to them.
So we’ve started a campaign called ‘No Bedtimes’ – inspired by the work of the Big Bed Time audit (which was in turn inspired by our work) we’re now calling on an end to inflexible support that effectively means adults are told what time they need to go to bed.
We know that there is a lot more that needs to be done to make sure local authorities commission support provision that truly enables individuals to lead the lives they want but a simple pledge to ensure that all providers have to provide flexible support would be a start.
“No amount of talking can mend this broken heart but you can put the hoover round if you want to make a start”. Valentine’s day is over, Billy Bragg
I love this lyric as it always reminds me that we could sit around and talk about our problems all day, and how many people do we know who like to have meetings about this sort of thing? But there’s also power (albeit a small change) in just doing something practical like putting the hoover round.
We know that there needs to be a radical overhaul of the thing that we currently call ‘social care’ as it’s not fit for purpose but there is also a danger that we can sit in meetings and imagine new ways of doing things that as so radical it’s hard for people to imagine where to start. You can imagine the ex-lover sitting there devastated with their broken heart and not knowing what to do.
A small practical action may not mend the real problem but it’s a sign of intent, an act of kindness and it’s a start!
I believe we all have to take practical actions that will make immediate differences and also set us on the path to a better future. So, I’ve set my ‘hoovering’ challenge at the end of this post.
What we also find though is that the language of commissioning is inaccessible. If those of us who aren’t from a commissioning background don’t understand it how can we be part of trying to help improve things?
More importantly if people who need support don’t understand the commissioning process how can they exercise their rights as citizens in helping to shape the support they receive?
So here are Stay Up Late’s questions and challenges for commissioners (and all of us)
- How can we commission support that truly enables ordinary things to happen in peoples’ lives?
- How can we explain what commissioning is about in an accessible way?
- Why can’t we end the practice of support providers telling adults with learning disabilities what time they must go to bed?
- What practical bit of ‘hoovering’ could you do right now to make a start with creating better lives for people who need support?
- What can commissioners learn from those support providers who have embraced change and who are doing the right thing?