It's been a really exciting week for me at the Centre. On Monday we had the conference on supported decision-making (which I tweeted about) and today we were really spoiled as one of the delegates, Cher Nicholson, came to give a workshop on a project she ran in South Australia on supported decision making. If you ever get the chance to go and see Cher speak about the project, I really really recommend that you do - it is relevant to everybody who comes into contact with issues around 'mental capacity' - from people said to 'lack capacity', to their friends and family, to social services, care providers, lawyers and disability NGOs. It's one of the most inspirational things I've seen in a long time.
Anyway, enough adulation and down to brass tacks. What was this project and why is it exciting and why should everyone in the UK (and my new home, Ireland) be thinking about it? The project was set up by the Office of the Public Advocate (OPA) in South Australia. Now, despite the name, the role is closer to the Office of the Public Guardian in the UK, only they actually provide the guardians - they don't just register and monitor them (apparently in South Australia they don't use social workers or solicitors as guardians - if family can't be the guardian, then OPA provide one). Apparently (I'm being too lazy and not looking this up) South Australia has very high rates of entry into guardianship, and they were looking for a project to explore alternatives to guardianship. So the project was initially conceived by OPA to look for ways to support people to make decisions for themselves, to avoid entry into guardianship, and they employed Cher Nicholson to coordinate it.
The project design was quite simple: find people who were at risk of entry into guardianship (the 'early intervention group') and faciliate 'support agreements' with people they trusted to help them make decisions over various welfare matters, including decisions about accommodation, health and lifestyle. Financial decisions were not covered, and several people recruited to the project were on 'administration orders' which sound a bit like a deputyship for property and affairs (I'll come back to that bit in a minute). Now, the project did exclude some people from the outset, and that was largely to do with the nature of the funding and also because they could only enlist a relatively small number (26 participated in the end) and also because it was an untested method. So it was targetted at people with intellectual disabilities and brain injuries, and people with serious conflict with families and so on were excluded (for reasons which will shortly become apparent). Cher was very keen to stress that they really didn't cream off those people often termed 'high functioning'. A lot of people couldn't read or write, and one woman could not communicate verbally at the outset of the project. Also, as is not uncommon with brain injury, a lot of people had a tendency to make impulsive decisions. So we're talking about a group of people who are often seen as those who couldn't make decisions for themselves.
Cher would go out and interview a potential participant, and spend a lot of time exploring what was important to them, what they wanted to change in their lives, and who they might trust to support them in making decisions. Once a potential supporter was identified, the nature of the project would be explained to them, and both parties would be asked to sign a 'contract' specifying the kind of support. The contract was flexible and tailored to each person, but it basically said 'I [Lucy] choose [Bob] to support me in making decisions about [accommodation], [health] and [lifestyle].' And then 'I [Bob] agree to support [Lucy] in making decisions about [accommodation], [health] and [lifestyle] by helping to explain the pros and cons of decisions, by helping [Lucy] to visit the people she needs to access information about decisions and by helping to put this information into a language that [Lucy] can understand.' Some were further tailored to add in extra criteria that were important to people, for example, the supporters might also be asked to agree to 'hear [Lucy] and let her have her say' and 'helping [Lucy] to focus on the future and not he past'. And people might add in specific decisions - like choosing who supports them in personal care, what day they go to the gym, or big decisions like where they lived, healthcare choices, planning their funeral arrangements or resuming contact with their children.
I can't remember the precise statistics, but a large chunk of people chose family members to be their supporters - apparently this was more common among younger people who might not have made many friends as yet. Some chose friends, others chose other relatives. One person began with a friend, but the friend pulled out having not realised their friend had a disability and so a person was recruited from a local voluntary organisation - although that didn't work out so well as they couldn't commit to it. Cher worked with the supporters and the people being supported and helped supporters to identify behaviours that were straying over into 'rescuing behaviours' rather than sticking to the agreement of offering support and information. In fact, they had these behaviours on small cards to check before support meetings to remind themselves of their role.
Not everybody's families and the providers were supportive of the project; in fact, one gets the sense that it ran into a huge amount of resistance. With family members and providers often convinced that a person could not possibly make decisions for themselves. Cher's advice was to start with the small things - showing that a person can make decisions around meals, going to the gym and so on, and build up to the big issues once you've managed to demonstrate some skills. It seemed that often the biggest problem was convincing others that people could make decisions if given the space to do so, rather than people making bad decisions.
One theme that came up in the workshop was the 'duty of care'... ah, the duty of care. In strictly legal terms, which I don't want to get too bogged down in, the relationship between the duty of care and stopping somebody from making a risky choice is not especially well defined. We know judgments like Tomlinson v Congleton have said that if a person 'has capacity' to make a risky choice, then there's no duty of care to stop them making it - but there are no judgments saying the converse, that somebody like a care worker should have stopped a person from making a risky choice. We know that there's a duty to investigate when a person's life may be at risk by a third party, including investigating their 'capacity' to make choices around that (Re Z) - although that's derived from human rights not duty of care. There's Rabone, I suppose, but a) that's not about the duty of care, and b) suicide is arguably a pretty special case. Anyway, I digress, the point is that the duty of care has a mythical status in care services which can be hard to combat. That's not to say there isn't, or shouldn't be, a duty of care to intervene in some situations, just that it's such a pervasive idea that we have to protect people from any possible risky choice or remote and imagined risk. But risk situations did arise in the project. One person became depressed and attempted suicide and was admitted to hospital. But in part, it was suggested, her depression was linked to not being able to make the choices she wanted in the support agreement. She came out of hospital, and was able to make those choices.
One of the findings of the project evaluation was that people's impulsivity was slowed down by the support agreement - they actively sought support, and it meant that they didn't make such impulsive decisions. By the end of the project, many people came off their support agreements, having learned to make better decisions for themselves, and convinced doubtful family and providers around them that they could. People went into hospital waving their support agreements to show that they could make their own healthcare choices (it may well have helped that the agreements were on OPA headed paper in having them taken seriously). One woman, with a severe communication impairment, had hers made into a flag which she put above her bed. One remarkable finding was that everyone who was on an administration order (like property and affairs deputyship) successfully applied to come off it by the end of the project.
I'm sure you have a million questions about the project, but I'm really hungry and want to leave the office so I'm going to direct you to the final evaluation of the project and there are more resources and a radio interview on this page. Although no economic costings were done, Cher suggested a number of ways in which people's support costs were actively reduced by their involvement in the project, and it's possible it may have made savings overall.
But the point I really wanted to make was this. When people hear about the radical interpretations of Article 12 CRPD they usually first see all the problems - questions arise about emergency interventions for suicide, self-harm, really risky behaviours. Then they ask how we know that 'support' isn't just substituted decision-making in disguise. Then they ask how it'll work for people with certain conditions who are supposedly impossible to support in decision making (often brain injury, interestingly). And then they turn their backs and go back to business as usual. I am, in some ways, as guilty of this as the next person. And I do think there are tricky issues to be negotiated around emergency situations, undue influence, people whose wishes and preferences are not clear, and the limit of the risks we are prepared to tolerate. But the more I meet people like Cher, the more I think we are looking at this the wrong way. It's not that these problems don't exist, it's just that by foregrounding them we lose sight of the problems with systems like the Mental Capacity Act 2005 and guardianship. We lost sight of what it means to lose the opportunities to make decisions for ourselves and the tremendous risks that are attached to being subject to substituted decisions where we can't make active choices about our lives. Do you think the people in Winterbourne View chose to be there, could choose to leave? Do you think Steven Hoskin actively chose to be moved to a town far from family and friends, where he had no social capital? Did that choice - made by others not him - make him any safer? Do you think there is any great mystery about why people who have been subject to a lifetime's worth of compulsory interventions which override their wishes and preferences might not want to engage with services? And I remember why I came to do a PhD in law in the first place after a decade of working in social care: it is impossible to overstate the pernicious influence that 'incapacity' has in gradually eroding all the important choices people have in their lives and muffling their voice.
I am not saying we should ignore the hard cases, or that we should brush aside these difficult questions. But I am saying this: the Mental Capacity Act 2005 encourages us to look at decisions in a very atomised way, without regard to the long term needs a person has to be supported to develop their own skills in decision making. The support interventions required by the courts have tended to be quite time limited and decision-specific - things like giving sex education, for example. Or they can be quite coercive - like removing a person from the family home so they can experience 'independent living' to make a choice for themselves. Where is the work being done in the UK to really help people become skilled in decision making for themselves? Are deputies and other substituted decision makers like social services working to provide this kind of supportive structure to help people reclaim their legal capacity? Do they have the skills and infrastructure to do so? It may be that there are pockets of something like this already happening in the UK (if so, I'd love to hear about it). But surely, this is what Article 12 really requires us to be doing. Not some measly short-term form of support like making sure you've produced an information sheet in easy-to-read or 8 hours support from an IMCA. It's about working to build upon people's own strengths and develop supportive relationships. What if, instead of solely focussing on the problems with universal legal capacity, we started to focus on the solutions as well...
If you're reading this and it strikes a chord, if you want to hear more, drop me an email and we'll continue the conversation - or write something in the comments section below. Perhaps there are some NGOs out there who would be interested in setting up a UK pilot? Perhaps some journalists are interested in writing about the project? Perhaps some people are interested in setting up support agreements without waiting for a pilot? Drop me a line, and I'll see what support and information I can hook you up with.
Eleanor Roosevelt, 1958
'Where, after all, do universal human rights begin? In small places, close to home -- so close and so small that they cannot be seen on any map of the world. Yet they are the world of the individual person... Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.' Eleanor Roosevelt, 1958