Dressing up

Steve Scown, the thoughtful and  reflective CEO of progressive not-for-profit care and support provider Dimensions, wrote today about the thorny issue of supporting people to make choices, when the choices they make might seem to be harmful to them. Steve contrasts his own life, in which his wife would vocally object if he tried to make the unwise choice to live off a diet of chips, with a support scenario from one of his services, where an adult who has a learning disability wanted to wear his batman costume every day, but hated the ridicule he got when he went out in it. He was becoming afraid to leave the house. The man had the mental capacity to make his own choices, so the staff supporting him “had concluded they had no option other than to support George to wear his favoured outfit.” Their role was to support him to choose not to make choices for him. The staff later found ways to help the man re-frame his choices and to focus more on his goal of not being ridiculed, than his desire to wear his unusual costume.

Steve’s point is that ‘choice and control’, applied blanket-fashion, is not likely to lead to great support. I think his point is well made and his conclusion reasonable: that care providers should learn to live with ‘complexity and ambiguity’, bringing a thoughtful and nuanced approach to “inform our risk assessments and …. best interests meetings”.

So I don’t disagree with anything Steve said, but I would like to delve a little deeper into what I would see as the underlying issue. For me, the challenge with supporting the Batman fan, and the difference between his situation and Steve’s, is perhaps the kinds of relationships in their lives. In other words, not a challenge with the quality of support, but with what we mean by support. I don’t know the man in question, but what he appeared to lack was a circle of friends to help him make choices. Dimensions is a great provider and I’ve no doubt that the workers supporting him did their job well, but their roles can never be a replacement for the friend or partner, who is a position to say, ‘You’re making the wrong choice’, because the person they are talking to is equally in a position to say, “I’m doing it anyway’. A Community Circle could help with this.

If the man was living with his family, they would have something to say about his choice of outfit, but would likely talk quite a different language to that of a service. In turn, any professionals in contact with the family would take a different view of that family’s choices to those made by fellow professionals. If the family had said ‘no’ to batman, some professionals would wonder if they were ‘controlling’. If they did not object to it, or they had learned to live with it, those same professionals might accuse them of infantilising the man, or blocking his development to independence. I mention those possibilities, because we have a tendency in service-land to bring our ‘professional’ lens to people’s lives, whereas for me there is a strong argument for services to try out the perspective of family life in considering this support challenge.

In a Shared Lives household, the relationships are somewhere in between those of a family, and those of a support service, which means that a Shared Lives scheme would probably find that situation just as complex and ambiguous as Steve’s organisation, but it would also offer a different way to look at it. When someone has chosen to live with a family as one of the household, particularly for many years, members of that household tend to approach offering advice more as they would for another family member, than as a professional working a shift. The man might need to make a choice between wearing his outfit and, say, going with the Shared Lives carer’s son to the football, just as any of us have to consider the extent to which we are prepared to moderate our particular choices to fit with those of our friends. A really great Shared Lives carer might also help the man build a circle a friends who were into comic conventions and cosplay: seen through that lens the man’s outfit choices are no longer age-inappropriate per se, it’s just a matter of the right time and place…

I’m not suggesting that Shared Lives has all the answers to these complex situations, but it does seem to me that Shared Lives, and the norms of family life more generally, offer a way to approach differently situations which in service-land we frame as being about risk assessment, mental capacity and independence. We could instead recognise that our main challenge is to help every individual to form and then navigate the personal relationships which we all need to live well. Services can never offer or replace those kinds of relationships: when we try to imitate them, we are just dressing up.

Thanks to Steve Scown (@SScown) for his thought-provoking blog and for inviting debate on this important subject.

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The shelter of each other

Our colleagues and members in Northern Ireland hosted an event for commissioners exploring how Shared Lives could be developed as a new form of short breaks, day support and home from hospital care for older people.

We are grateful to Fionnuala McAndrew of the Health and Social Care Board who helped convene and kick off the day and to Mary Hinds, of the Public Health Agency, who summed up beautifully, drawing on an Irish proverb I’ve not heard before: We live in the shelter of each other.

I’d be willing to bet that that rings true for you as much as it does for me. For years now, the ideal living situation through the eyes of long term care and support services has been independent living. It’s not a bad goal, particularly when contrasted with institutional alternatives. But that language doesn’t tend to figure in our own descriptions of what we dream of, unless or until our independence is at risk. When people describe happiness, for most (admittedly not all) of us, it involves having people  we can rely on. In other words, we dream of interdependence, not complete independence.

This can be an uncomfortable idea for long term support services which are wary of ‘creating dependence’. Few of us would want to be dependent on a service. But perhaps it is not so much that becoming dependent is ‘inappropriate’ to support relationships, but that the way we construct support relationships can be an uncomfortable fit with our naturally interdependent nature. People working in social care often find their roles put strict limitations on the definition of ‘care’ and are too rushed and impersonal to feel ‘social’. This incompatibility between the human nature of both people who give and those who receive long term care is at its most stark when the intimacy of personal care is carried out by a succession of strangers.

Shared Lives is not about dependency in the pejorative sense and for some people it is very much a stepping stone to getting their own place. Half of the people using Shared Lives Continue reading