Choice can be a challenging concept

‘Choice can be a challenging concept’. In this blog Steve Scown, CEO of Dimensions, explores how lockdown affected people with learning disabilities and autism, and colleagues, in unexpected ways.

Today, I’m wrestling with some conflicting thoughts which I thought I’d share – and see if others have had a similar lockdown experience.

It has been long-standing article of faith for me that we have a responsibility, if not a duty, to encourage the people we support to be ambitious about their lives - to encourage people to expand their horizons, learn new skills, try new experiences and fulfil their passions. As someone who has spent years helping people move out of large institutions, I believe people should be supported to become part of their local community.

But what does that mean? We don’t all spend every minute of our lives out and about doing stuff – I think most of us like days where we just chill, preferring to do nothing much. That’s ok - it’s part of the choices we make as individuals. But as a provider of support I am very mindful of the risk of this pattern of behaviour prevailing and shrinking peoples’ horizons as a consequence. Part of avoiding this requires my colleagues to understand the difference between what is important to that person and what is important for them.

Choice can be a challenging concept for my colleagues. I’ve lost count of the conversations I’ve had with new colleagues helping them to realise that enabling someone to make choices doesn’t mean it’s OK for them to stay in bed all day or live off chips. Every day my colleagues are having to make skilled judgements about how and when to ‘push’ a little.

Consequently, Dimensions invests in finding work and volunteering opportunities for the people we support. Finding friendship groups. Encouraging people to spend time out and about. I’m proud of our contribution to many people we support having a fulfilling life. But currently – because of what I’ve seen during the past few months and because of what the data has told me - I’m beginning to question some areas of what we do.

At the start of lockdown one of our many fears (and we had quite a few) was that the experiences for some people would lead to an increase in incidents of behaviours that challenge. In other words, would some people, now spending nearly all their time indoors, get bored and so frustrated that it would ‘boil-over’?

What did the data tell us?

But that hasn’t been our reality - the data is telling me a different story. Overall, since lockdown was introduced, we have seen a material reduction in behaviour that challenges – far less than we would expect in normal times. Of course, one reason may be the quality of our support has been consistent. I know that many of my colleagues have really gone the extra mile to keep the person they support safe and well – so that inevitably is part of the story.

But our experience also seems to be pointing to a proposition that I’m less comfortable with. The expectation of trying new things and the opportunities to be out and about have both reduced. So - have my colleagues and the people they have been supporting simply felt less anxious?  Has this led to a more relaxed environment? Have some people as a result found it easier to live within the narrow confines required by lockdown?

Perhaps this second potential explanation is at least part of the picture. If it is, then to what extent does that challenge our level of ambition? Have we unintentionally been causing anxiety by being too ambitious for the people we’ve been supporting? With the best intentions, could it be that one of our values has got in the way of providing the sort of support some people want?

TLAP says, “Personalisation is fundamentally about better lives… greater independence and enhanced wellbeing within stronger, more resilient communities.” I’m a signed-up, flag-waving standard bearer for that. But I’m also just beginning to wonder if, for some people, the expectations we have placed on colleagues have led to pushing too far and too fast?

We are currently taking a long hard look at what we have learned from the Covid-19 period and identifying things that we may want to do differently in future; this is one of the thornier issues we’re wrestling with. I would love to hear of others’ experience and whether it is different to my own observations.