If I could have picked a family, it would have been you

I was privileged to take part in our Scotland conference this month, at Stirling University. As usual, the Shared Lives carers and service users made the day. We heard from Ethel, a Shared Lives carer for 25 years, and from her daughter, who has also become a Shared Lives carer, as have both Ethel’s other children, now all living in different parts of the country. The first gentleman Ethel supported came to her for 15 days, when his Dad was ill. His Dad sadly died during his stay and he decided that he would just “stay with Ethel until I get married”. He still lives with her. Having had an entirely sedentary life at home, he discovered a love of all kinds of sport and a new confidence to go out and about. He still hasn’t got married, but does have a steady girlfriend.

Megan, in her early 20s, reflected upon her experience of being supported by Lynn, a Shared Lives carer with the Fife Supported Lodgings scheme which arranges family-based care for care leavers. Megan, who has lived independently for a few years now, said “I would have been an absolute wreck without them”. Lynn said, “If someone had told me I’d be doing this work 10 years ago, I would have laughed at them. I’d raised kids and that was enough. After ill health, I was trying to get back into work when I found about Fife Supported Lodgings. A highlight for me was when the first young man I supported said to me, ‘If I could have picked a family, it would have been you.’ Now all my family are involved: when Megan was between houses with a new baby, she stayed with my daughter for a couple of weeks and we’re all going to Megan’s daughter’s first birthday party later on today.”

When is Shared Lives just shared living?

Here in the Shared Lives sector we’re used to confusing the people whose job is to fund or purchase social care for the local council or NHS Trust. Shared Lives doesn’t fit the usual boxes, it’s not funded quite in the normal way, it has different boundaries and expectations, and so on.

At a recent meeting wiht the researchers at Kent and LSE Universities (the PSSRU unit) who are beginning to research the outcomes and costs of providing Shared Lives to older people, we started to discuss the small but perhaps growing number of older people who don’t have eligible social care needs (ie needs which the council will pay to have met), but who are interested in living as part of a family.

Some have arrived at the Shared Lives service via a mental health service because living in isolation has resulted in depression. Others simply don’t like the idea of continuing to live alone in a large house with family at a distance and are planning for a future when they be less independent. They have the option of selling their large house to move into sheltered accommodation, but aren’t sure that is what they are looking for. Continue reading

Ditch ‘prevention’!

This is the last blog in a series inspired by a seminar with social care leaders which looked at the question of citizen and community-led change.

It became clear early on in the discussion that some people had arrived expecting a debate about ‘social capital’ and community development, whilst others had been expecting a debate about early intervention and prevention. Personally, I believe that both of those concepts do, or should, mean much the same thing. Put another way, soon after I agreed to become the ‘co-lead’ on prevention and early intervention for the social care White Paper, I decided that given the choice, I’d drop the language of prevention and early intervention entirely and replace it with the language of well-being, empowerment and citizen-leadership.

Sue Bott of Disability Rights UK reacted to talk of prevention like this: “People who use services don’t want to be divided into the fixable and the not-fixable”. The problem is that prevention is all about people’s problems (will you be a drain on resources?) whereas the things ‘preventative services’ wish to achieve, are best achieved by focusing on people’s gifts, skills and assets.

‘Early intervention’ is just as bad: if the territory of ‘prevention’ is all about tackling isolation, helping people to connect and empowerment, those are outcomes which are just as relevant to the person who has just started to become less mobile in later life, the person with a life-long physical impairment or the person at the end of their life. No one wants to be lonely: whatever else is going on in your life, being lonely is miserable and worse for you than smoking.

So I think it’s time to move on from thinking about how to save money through reducing NHS admissions, which might involve coming up with wheezes which simply transfer the cost to social care, and instead think whole-person and whole-community. People will always need specialist responses and hopefully those responses will continue to become more coordinated, skilled and efficient. But the real gains will come when all services, whether they are used by people with ‘low level’ or ‘high level’ needs, think beyond meeting the present need and towards increasing the likelihood that the individual – and often their community – will be more knowledgeable, networked and confident in future.

If we can get that right, not only will more people be able to live a good life, with fewer trapped in a cycle of dependence and ‘revolving door’ use of crisis services, but savings generated will be more likely to be real, and to the public purse as a whole, not just to one sector or another.

New radicals?

This weekend, the nice people at NESTA included Shared Lives in an article you can read online (http://www.nesta.org.uk/news_and_features/britains_new_radicals/alex_fox_shared_lives)  and a mention in the Observer, under the heading ‘Britain’s New Radicals’. Shared Lives as a new form of radicalism is interesting. Whilst Shared Lives Plus was founded in the 1990s, Shared Lives isn’t a very new form of radicalism: it’s been a radical idea ever since the middle ages.

In the 14th Century, pilgrims came from all over Europe to the Belgium town of Geel, which has a shrine to Saint Dymphna, the patron saint of mental illness. Instead of building a large asylum for people with mental illness, the town organised itself into a ‘boarding out’ system, with pilgrims living with families in the town. That arrangement still survives in Geel today. It came to Scotland in Victorian times as an alternative to asylums and then returned to the UK in the ‘70s, where it quickly became predominantly a service for people with learning disabilities, particularly during the ‘80s when large numbers of people with learning disabilities moved out of long stay hospitals. Most moved into care homes, but some into the homes of people we would now recognise as Shared Lives carers. I was lucky enough to meet people who have been living together for 30 years on a recent trip to Bath’s scheme.

These days, Shared Lives carers have to undertake vetting, approval and training. The support and accommodation they offer is monitored by their local Shared Lives scheme. They don’t just offer long term live-in arrangements, but also short breaks and day support, particularly for people with dementia, who often prefer a regular, familiar visit to a Shared Lives carer in the carer’s own home than to use a large day centre.

However, although Shared Lives is now regulated, with its own rules and even tax arrangements, it’s never lost its radical edge Continue reading

A new Trustee for Shared Lives Plus

Richard Jones, Director of Lancashire’s Adult Services and our newest Trustee, says that when he thinks of Shared Lives, he thinks of a young man who used to live in services and now lives with a family and as a result he is loved and can give love. He matters and can contribute to family life. He is part of that family’s holidays, weddings and funerals. He has the opportunity to feel responsible for those around him, not just reliant on them.

We had our board and team planning day this week. It was fantastic to be part of a group of people bringing the same passion, but from very different viewpoints, to thinking about Shared Lives and other small community approaches to care and support. Part of the thinking was about how we ensured that Shared Lives and micro-enterprises became much better understood. We decided that our offer was about citizens, communities and costs: our members help people to become citizens, who can contribute in all kinds of ways, as well as receive great support. Our members build upon relationships and communities. And doing this isn’t more expensive than traditional care: increasing numbers of areas are using it as a way of bringing down costs whilst helping people to live better lives.

Some of the discussion was about the place of Shared Lives and micro-enterprises within the personalisation reforms (which I’ve written about a number of times below).

 I’m not sure it’s a coincidence that we latched onto personal budgets as the key driver for personalisation at a time when we are all more consumerist than we’ve ever been. And I’m sure it’s no coincidence that the rise of consumerism has been accompanied by a rise in loneliness and isolation Continue reading

Responsibilities, not just needs?

When I started working in social care, I remember being told about Maslow’s hierarchy of needs. Maslow represented human needs in a pyramid, with basic, physiological needs such as the need to eat at the bottom, followed by the need for safety, the need to feel loved and like you belong, with the need to “self-actualise” – to be all that you can be – at the top. He believed that you had to meet your base needs before you could pursue higher needs, with self-actualisation something you are only in a position to pursue when your physical and psychological needs are fully met. Maslow has been criticised from a number of directions: firstly, putting self-actualisation at the top of the pyramid reflects the aspirations of an individualistic society and particularly perhaps a particular male view of achievement. It was suggested that someone from a more collectivist society might value community acceptance above expression of self. Others have questioned whether there is any real evidence for human needs to be arranged hierarchically at all.

It’s always struck me as one of those ideas which hides a lot of dangers within its common-sense appeal. It’s a short step from recognising that it’s hard to pursue self-fulfilment when your basic needs are not met, to assuming that people who struggle with the most basic functions may not also have the “higher” aspirations. This is self-fulfilling: when people with severe impairments were placed in de-humanising institutions, it was often indeed hard for them to aspire to anything beyond meeting their basic needs and easy to write people off who were able to confound those expectations when they moved to a different environment (see A box of buttons, below).

And it’s not just collectivist societies who might question Maslow’s view of self-actualisation as being at the peak of human aspirations. Maslow saw sex as one of the base needs, Continue reading

Is there a future for building-based services

A colleague recently posted a question on a LinkedIn personalisation forum about whether there is a future for building-based services.

I think we are too simplistic when we come to make decisions about building based services, particulalry when it comes to whether to keep or close them. Such services actually have three distinct parts to them, and we need to make at least three separate decisions about them:

1. There is the building, which could be used in all kinds of ways by all kinds of people, including some of the people who currently use it, but also others in the community.

2. There is a set of services, some of which may be excellent, others less so. Some may be valued by some, but not all, of the current and potential users. Some may be best provided in the current building, others better provided elsewhere.

3. There is a set of relationships, some of which may be lifelong.

It is these relationships which are most often overlooked in decision making. This is why there are supermarket cafes which have become de facto day centres for people who are bored and lonely and missing their friends. People should have choices over their relationships. Day centres and the like reduce those choices by lumping everyone together, but so do approaches which assume that everyone is always best off doing everything on their own, or in ‘the community’, particularly when the community proves hard to find, or not very interested in them. There is often a lot of work needed on finding and forming people’s networks and communities, not just a ready-made community out there for people to slot neatly into.

People who use services and potential service users, and their families, should all have a say in planning to maintain and develop all three aspects of existing services, not just the most obvious aspects of them.

Time to ditch the RAS? Part 2.

In an entry a couple of weeks ago, I identified three problems with the current way in which an individual’s needs are assessed, then their ability to pay, and then their social care entitlement converted into a cash amount, which they are helped to spend. I suggested that, even done well, the system had these problems:

  1. The assessment of your needs is based on you proving how bad things are. You might even have to wait for things to get worse before you become eligible for expensive support, when making cheaper, preventative support available would have been much more cost-effective.
  2. The addition of extra assessment and planning stages to the existing system, in order to convert your needs into an appropriate cash personal budget, has added bureaucracy. There is actually more gatekeeping than ever in some areas.
  3. The process focuses everyone on the money, which makes it harder to focus on outcomes and being creative.

I promised to think up some solutions to those problems, and asked you for yours.

The comments you were kind enough to post were very interesting. There was some consensus around the problems. No one believes that giving people the chance to control the money that is spent on them is the wrong aim, but lots of people would like it to be simpler, quicker and fairer to get to that amount of money, with fewer restrictions on what it is spent on. Several people feel that there is no way round the need for a RAS type system, and we should accept that reality and focus on making it work. If you put identifying the service first, you’ve returned to the old system; if you put identifying the budget first, you need to base that budget on costings based on a range of likely services. Few contributors, I felt, could articulate a practical third way.

Resource allocation systems build in two opportunities for professionals to exert control: first in setting an indicative amount, then in signing off (or not) the final budget. If it is never going to be possible for the state to relinquish budget sign-off completely, how could that control at least be eroded or tempered, without leading to bankrupt councils?

At a corporate level, council finance directors cannot relinquish overall control of budgets: it’s their job not to overspend. There is a tension between this need to exert control at a population level and the desire to relinquish budgetary control at the individual level. We could reduce that tension in a couple of ways:

First, and least likely, we could give council finance directors a breathing space where, if they can produce balanced budgets over five years, their budgets can be guaranteed for that period. This would allow councils to invest in prevention and to look more kindly on individuals who need to invest in non-traditional interventions which might prevent greater need later on. It’s hard to imagine this happening. The evidence base for many preventative services is weak and the government would need to find money up front and underwrite the losses if council’s plans didn’t work out.

Secondly, we could help people who use services act a little more like finance directors, Continue reading

Some consensus on the problem, solutions prove harder…

There has been an interesting debate on the LinkedIn group called “The Personalisation Group to revolutionise social care” (http://www.linkedin.com) about my last blog entry. I’ve cut and pasted the contributions as comments at the bottom of the last entry.

Martin Routledge (ex DH, now In control and Think Local, Act Personal lead) warned against any suggestion that there was a golden age. I agree that there were of course good reasons for shaking up the system and the RAS was probably the only credible and widely understood approach to managing the money at the time.

Veteran disability rights activist, consultant and trainer, Simon Stevens outlines how his council effectively took a different approach, whilst the RAS is, in his view, ” just itemised billing on an old system”. In a recent comment he says, “A good assessment is a piece of art and not a work of science….It is important to remember, personal budgets were never what was intended, and it was born out of the failure of individualised budgets where the funding streams were supposed to come together……Life is complex and fairness is subjective so assessments must be reflective to individual circumstances. I have heard RAS described as an mechanism to keep social workers ‘on the straight and narrow’ rather than users.”

Colin Strasberg agrees that trying to get to even an estimated cash amount first, before interventions have been properly explored, is the wrong way round. He argues that Fair Access to Care (FACS) eligibility criteria, reviled by many, is actually sound, just poorly developed and applied; it needs developing in Colin’s view to move away from a black and white divide between needs which are eligible for support and those which are ineligible. Colin is working on that idea and it will be interesting to see if he can turn that into a workable route to a personalised system.

Jez Ashdown adds, “My experience of working with a number local authorities across the North of England is that the RAS process has never lived up to its intended purpose… In a system where the resources available fail to meet the need the primary function of that system will be to ration, or allocate resources to competing priorities. In the case of social care this tends to mean that nearly everyone gets less than they need.”

So what we’re all agreed upon is that there are still huge challenges in turning the ideal of choice and control into practical reality, but what we’re short of are detailed, workable alternatives to the RAS…. I’m still drafting my attempt at this – and fully expecting to be shot down in flames when I post it!

Please keep the comments coming…

Hits and myths

Thanks for all the great responses to my blog on the myths of personalisation (many of them members of the excellent ‘Personalisation Group to revolutionise social care’on the networking site, LinkedIn). I was told about an example of one of the myths in action today: a council who had decided that direct payments were now the only way a certain group of people could access support, thus excluding them from the excellent local Shared Lives service, which is provided directly (‘in-house’) by the council (and you can’t use Direct Payments to buy an in-house service). Direct Payments as a way to limit choice – well done guys.

The solution to this is easy – people can use a personal budget to purchase the in-house service, then take anything left over in their budget as a Direct Payment, if they want to purchase something else. But I suspect whoever made this rule has an eye on the government drive (they don’t call them targets any more!) to increase Direct Payment take-up. I wonder if there has ever been a target set, which doesn’t encourage someone, somewhere to do the opposite thing to that which the target setter intended.

Anyway, thanks to your comments,  I can add to my list of six myths. Continue reading