People making choices about how they are supported is at the centre of the personalisation project. It seems such an obvious and simple idea: of course people are going to know more about what they want to get out of life than a public official, no matter how sympathetic or qualified. While ‘client self-determination’ has been part of the post-war social work tradition, it was often qualified by the caveat that the ‘client’ may not always know what was in their own interests. The disabled people’s movement, however, challenged the prerogative of state welfare to define both the problem and the remedy. Their position was given legitimacy through the Independent Living Fund (1988), the Community Care (Direct Payments) Act 1996 and subsequently by official support for the In Control demonstration project (2005) that gave people who need support and their families the authority to take a lead in planning that support.
There have been worries about unintended consequences. Chris Hatton in his blog writes, “The benign view is that personalisation can liberate people from constraining systems of support that are far from nurturing, with people then able to use their resources to develop nurturing and supportive social networks stretching beyond the reach of services and to reconnect more meaningfully with their family, friends and local communities. The malign view is that personalisation atomises the person’s social world, separating them from much-needed support, pitting individuals against their families and leaving them isolated and alone within communities that are at best indifferent.” Broadly speaking, the ‘benign view’, in Hatton’s words, prevails with continued Government support for the machinery of personalisation.
This blog explores some perspectives on personal decision-making and considers whether there is something more we need to do to understand or qualify the simple proposition of ‘choice and control’.
Perspective 1: ‘control’ emerges from relationships
We are fundamentally social beings. Being social means engaging in relationships. Relationships involve an acceptance that personal interests will, at times, be overridden by shared interests or the interests of the group. But, in giving up control in this way, people can find confidence and, paradoxically, other kinds of control. Being with friends gives me a sense of solidarity and belonging; they offer me some protection and the confidence that goes with that; and my friendship group facilitates conversations and interactions with many more people. Relationships evolve meaning that I can’t plan or predict the outcome; I just follow my social instincts knowing that to be engaged is probably better than to remain detached.
The only consistent and reliable relationships for many disabled people are with their families. Friendships in special schools and day centres are easily disrupted – people have little power to maintain those friendships on their own terms. Physical closeness to another person, other than family, usually means someone seeing to your ‘care needs’. Solidarity and belonging have little time to develop.
The idea of having control in your own life, then, is closely linked to the personal and social relationships that define who you are. By becoming a friend, a colleague, a member, a neighbour, a lover I begin to experience myself in a fuller sense as a social being and in doing so I establish greater mastery over my life. Take away or seek to manage those relationships and connections on my behalf, that mastery is diminished. Where does that leave people whose relationships, aside from those with their families, are shallow and unreliable? Building relationships can be seen as a core feature of helping people to be ‘in control’.
Perspective 2: others are important in shaping our decisions
We often take decisions with other people: what are we having for tea? when are we going shopping? where shall we go on holiday? Our membership of and participation in families, but also in faith groups, supporters clubs, political parties, leisure groups, and so on, has a big part to play in decisions we take, large and small. Even our place in our neighbourhood shapes our behaviour and decisions: when to cut the grass, when to clean the windows etc. There’s plenty going on here: shared interests, conformity, compliance, beliefs and identification. In most instances we’re prepared to have our decisions shaped in these ways as long as we can feel that we have chosen to be as we are. It’s part of being social. Such influences give us a framework for deciding things.
People with learning disabilities and others are often living within a different framework. Their lives are shaped by care plans and the people who implement them, sometimes even down to the smallest of decisions. Changes of direction have to be sanctioned by reviews and best interest meetings. A veto on any decision can be exercised by others at any time, even the decision about who to spend time with. Family life may offer a break from controlling care regimes, but some families, often for the best of motives, have their own controlling framework in place. People shuttle between controlling frameworks and have little power to influence how those frameworks operate or, at any time, to opt out.
The offer of choice and control is an offer to move from the ‘restrictive’ type of framework to the kind of (reciprocal) framework within which most of us live. It would be easy to suppose that people will take to this move with ease. But, maybe, we need a better sense of what it takes to learn and internalise all the social rules of ‘unrestricted’ living if people are going to be fully liberated.
Perspective 3: groups can give us a sense of power and confidence
I’ve spent a lot of time recently in a day centre for people with learning disabilities. It’s a service model that some people view with disdain. But what I’ve observed tells a more subtle and complicated story. I’ve observed the pleasure and confidence that people get from sharing the company of other day service attenders, the satisfaction they have in working on a task together, the formation of friendships and more intimate relationships, and the security that emerges from being part of a predictable and reliable social group.
If you were to ask each of three friends what they would like to do next .. or what they would like to do next week, or next year, you will get very different answers asking them separately from asking them together. Together, they are more confident; they learn from each other; they discover they would like to do things together; they appear to be more likely to manage the support available to them; they are less influenced by the person asking the question or by their families or key workers. It’s a different dynamic. Change the group again (say with two or three more people) and new possibilities appear: “Yes we could do that if we pooled our resources”; “If we’re all together, we don’t have to rely so much on staff and assistants.” These are significant observations. They present us with the option of working with people together in situations where their confidence is high. More often though we work with people in isolation when their confidence is low and when, to get some help rather than none, they and their families are very ready to go with the usual systems and routines. Social care law and policy guides us to working with one case at a time. Working with peers together (.. or families together) creates confusion for rule-bound officials. There is scope here for new and imaginative practice.
Perspective 4: people need time to exercise their choice reflex
Most people grow up with the idea that, as they get older, they take more responsibility for their lives. This involves thinking through the consequences of different courses of action. We get used to considering options, evaluating their merits and making plans to go in one direction or another. Over time we learn to make the kind of choices which, by and large, serve our interests, or at least match the preferences we have developed through our formative years.
It is a skill that many disabled people have little chance to practice. Through their childhood and early adult years most important decisions are made for them. They learn to defer to other people who carry the authority to decide on their behalf. In these circumstances there is little point weighing up what to do next year, or next week or even next day; it’s all been decided. Suddenly, to be offered choice and control, may not be welcome. To be asked to decide about the future may be quite threatening if it disrupts a secure routine decided by others. Choice, then, and learning from the mistakes of making the wrong choices, may be actions to be rehearsed and practiced many times before people have the confidence to make big decisions. Totalitarian societies show us that thinking and acting independently is easily conceded. In the business of giving someone choice it may seem easier (and perhaps safer) to exert influence in the person’s ‘best interests’ than to give them to time to learn, practice and build up confidence in their choice-making capacity.
Perspective 5: It’s almost inevitable that front-line workers will often go for the simplest (menu-driven) option
The social care staff who assess needs and prepare support plans are hard pressed .. they don’t have the time to consider the subtleties of each situation. Social care these days has become very much a menu-driven activity. Getting a care plan in place is a matter of determining eligible needs, checking the outcomes the person seems to be wanting and then agreeing the mechanism to deliver the support prescribed. The activity of personal decision making is attenuated: quick decisions are called for. What a contrast with most people’s messy, indecisive lives! How long does it take most people to decide: where they want to live and with whom; what kind of job or education they want; how they want to spend their free time; how much contact they want with their families? For most people it’s often a mix of guessing, trial and error and serendipity. For disabled people and others, the decision is needed now, and it’s a binding decision. Social care has become a much tidier business, one where staff are in trouble if they don’t define, then pursue outcomes unambiguously. It’s going to mess up the whole system if people want to spend too much time trying things out. Ironically, the customers of social care who are being asked to be so decisive, are the same people whose decision-making faculties have been so badly blunted by the service system that now wants a quick answer.
Perspective 6: p.a’s can be oppressive as well as enabling
It’s increasingly visible now: the person out with their p.a. It’s also visible that some of those p.a’s are not too interested in the person they’re with, and, noticeably, some are controlling everything that goes on. When an articulate and able person is in a one-to-one relationship with someone who is less articulate and less able, the relationship can be controlling and oppressive one. The idea that the less articulate and able person is in control is suspect, unless the other person is working hard to support their ‘employer’ to take decisions while suppressing their own inclination to take over. This unusual relationship has the potential to become even more controlling than relationships in traditional services. There are few built-in checks and balances, and no obvious accountability. Of course, the employer can sack their oppressive employee, or their parents/carers can .. but this takes a huge act of self assurance. Some p.a’s are wonderful and enabling. Others are more ordinary. In nearly all jobs self-interest plays a big part in how we conduct ourselves, but most of us are motivated by colleagues to conform to some minimum requirement to earn our wage. The p.a. is, peculiarly, a self-motivating role. It’s not one in which you can be empowering just some of the time – when you’re on form. Once you stop being empowering and take control arbitrarily the spell is broken – a person will not be empowered by someone who only let’s them choose some of the time.
There’s no simple, system-based formula for handing over choice and control. In looking at people and how they relate and get on together, John Shotter talks about ‘the amazingness of the ordinary’ .. adding that we know little about how people manage the complexity of everyday life. Helping people to become independent is part of that ‘amazingness’ and calls for an attitude that is both open and imaginative. It’s not just a question of “Here’s your budget, now over to you.”
There is something interesting here about new roles and skills for social care workers that we may have overlooked in the haste to get our RAS’s right, streamline support plans and get social care markets online.