How many social care workers does it take to change a lightbulb?

I spoke at GovToday’s Social Care conference yesterday on ‘rethinking personalisation.’ My argument you won’t be surprised to hear was not that we should re-think whether personalisation is a good idea, but that we still have more to do in really understanding what good care and support as part of living a good life really looks like. I started by suggesting that when I talk to policy makers and when I talk to people who use services and front line workers it can seem like there are two different worlds. In one world, anything is possible. We can make savings whilst tailoring support to what people want and helping people find good lives. The other world feels at times like it’s full of cuts, gaps, unmet need and failures in even basic care and safety. You could say that just shows how out of touch with reality the people dreaming of personalisation are, but you can find real people living real lives in both worlds.

I believe that a lot of the people living in the world full of possibility and who have found many of the resources they need, get to live in that better world not because they live in an area where there is endless public money (not sure where that would be these days), but because they have found other kinds of resources, including being supported to find and build their own resourcefulness. Often when people are able to live lives which feel whole and not fractured, another pair of very different realms – the realm of services and the realm of families and friendships – have found a way of complementing each other, rather than ignoring or fighting against each other.

The Joint Committee which looked at the draft Care and Support Bill reports next Tuesday. I’m hopeful that it will recommend that the Bill does more to create that alignment between paid and unpaid, formal and informal. If it does, I think that the Bill and last year’s White Paper could be seen in future years as a turning point for social care, and perhaps for attitudes to public services more generally. This won’t be about cutting existing services and hoping for the best. But it will be about a system which

Personalisation for offenders?

I’ve blogged before about the incredible achievements of a small number of Shared Lives carers who specialise in supporting offenders with learning disabilties or mental health problems. We are working with Manchester Metropolitan University and others to attempt to scale this kind of care and resettlement up nationally. Here’s my column about personalisation in Guardian Society: http://goo.gl/0ASN0.

There is a longer piece about lessons for other sectors from the personalisation of social care published with the RSA: http://goo.gl/fD6NA.

Three questions

The closure of day centres  – and other ‘building-based’ services – continues apace. I subscribe to a popular email group run by the Foundation for People with Learning Disabilities (http://www.choiceforum.org) and there has been a spate of messages recently from family carers and professionals raising concerns about this. There’s even a report of an area opening up a new day centre for people with complex needs, having closed the old one and decided that alternatives weren’t working.

The debate about day centres quickly becomes ideological and couched in black and white terms. One side believes that the alternative to day centres is casting people with learning disabilities out into a solitary existence in a ‘community’ that turns out to be at best elusive, and at worst, openly hostile. The other side believes that day centres are evidence that segregation and institutionalisation are far from the memories they should be.

I’m reminded of the anecdote a former colleague told me of a visit by an ageing member of the House of Lords to the day centre for older people my colleague was running. It became clear that Lord X might himself be in the early stages of dementia and also that he was having a very enjoyable time, chatting with people his own age. My colleague said to Lady X, as she was thanking him for his hospitality, that his Lordship would be welcome to drop in and use the facilities whenever he wished. “That’s awfully kind of you, but my husband is already a member of the most exclusive day centre in the world”.

Most of us belong, or would like to belong, to clubs and groups of one kind or another. The difference being, that most people have choices about what to belong to and to opt out of. Clubs and groups which want us as – usually paying  – members, have to design themselves around our changing wishes and needs. We often get to contribute as well as to recieve something. And we get the option of spending time on our own as well, when we wish.

I believe that the painful and often angry debates about building-based services could nearly always be avoided if, instead of asking “Should this day centre close?”, decision-makers always asked everyone concerned these three questions:

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,

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.

A box of buttons

The other day I met the outgoing and much respected national Director for learning disabilities at the Department of Health, Anne Williams, who told me a story that made us both a little tearful.

Anne had met a lady who’d lived for countless years in a long stay hospital for people with learning disabilities. She had no speech, never went out and shrieked whenever someone approached her. The one thing she liked was her box of buttons which she sat and ran her fingers through.

Anne met the lady after she’d left the hospital and was living in a small shared home. In a short space of time, her life had improved immeasurably. She was able to interact with people, no longer shrieking in distress when approached. She had used the bus for what people would have assumed was the first time, if it hadn’t been clear that she remembered how to use it, probably from memories of going out as a child. Rather than receiving whatever was on the hospital menu that day, she was able to tell Anne what she had chosen for her lunch by taking her to her fridge and laying out her choices on her kitchen table.

To think that, needlessly, that lady’s life had, for decades, been reduced to a box of buttons, was what we found so moving about that story.

Now there are few long stay hospitals. Whilst most are staffed by good people doing their best, the Winterbourne scandal

Alternatives to PAs

In my blog below, I outlined some pernicious myths about personalisation. One of them is that personalisation is all about giving people Direct Payments, usually to employ a Personal Assistant (PA). This myth is important: if we don’t address it, it has the potential to do real damage to the goals of personalisation, which are that people will have a real choice of how they are supported and by whom and that they will be able to build a life where they feel in control and like they belong.

We are seeing an increasing number of cases where an individual is supported by a Personal Assistant (PA), but does not want the responsibilities of being an employer. Sometimes individuals and PAs are encouraged to treat the relationship as one in which the PA is self-employed, in order to avoid the budget holder having to take on the tax and employment liabilities of being an employer.

This is dangerous. The Revenue have pursued disabled people for thousands in unpaid National Insurance contributions and tribunals have found that people who were treated as self-employed were nevertheless employees, entitled to sick pay, holiday pay and so on. Cases like these add the perception of personalisation as risky and badly thought out. There are three things we need to do to address this situation

Myths, cynicism and personalisation

The personalisation of social care – the idea that everyone who is offered support should have maximum choice and control over their service and their life – is beset with some real problems. The biggest one being that making personalisation happen requires changes in services and budgets, at a time when councils are also cutting services and budgets. There have been articles in the trade press recently alleging that, surprise, surprise, the cuts tend to win out over more positive reforms.

But personalisation is also beset with problems which aren’t real. Right from the start, people’s picture of what personalisation means has been as much about the myths as the reality. Of course, when even the people charged with carrying out the policy on the ground themselves have a fairly shaky understanding of what personalisation is really about, myth swiftly becomes reality for lots of people.

The ideas that people should have choices, control over their services and their lives and the opportunity to make a contribution to their community: all of these are real and important ideas. We can’t let them drown in the myths. So there’s a real need for some myth-busting. Here are my top myths in need of busting: I’d love to hear yours.

1, Personalisation is all about personal budgets or Direct Payments.

Personalisation is about people having more choices, more control, more opportunity to contribute. Changing the way the money moves around is only one part of making this happen. People who don’t want control of the money still want control of their lives. And having control of the money makes no difference if there’s no one ensuring that there is a growing choice of small support providers, not a diminishing group of cut-price care supermarkets.

2, Personal budgets and Direct Payments are the same thing.

People are still confused about the difference between personal budgets and Direct Payments. Not to mention individual budgets. A personal budget is an allocation of social care resources. There are different ways to take that allocation, the ‘purest’ being as a cash Direct Payment. But if you don’t want to be legally responsible for spending that cash, you can get the council to manage it for you (sometimes called a managed budget) or another organisation to both manage your budget and provide your service (sometimes called an Individual Service Fund). Individual (sometimes mis-quoted as ‘individualised) budgets were a pilot scheme, now ended, which involved budget-pooling.

3. Direct Payments are just for employing a personal assistant.

The UK needs Homeshare

Yesterday, we launched the new Homeshare good practice guide and calls on government (download them at  http://bit.ly/hqZ7KL). We’ve had some good coverage in Community Care magazine:  http://bit.ly/fkNfAr (article) and  http://bit.ly/eGoLLd (my column).

In ‘Homeshare’, someone who needs some help to live independently in their own home is matched with someone who has a housing need and can provide a little support.

‘Householders’ are often older people who have their own home but who have developed some support needs or are isolated or anxious about living alone. ‘Homesharers’ are often students or key public service workers who cannot afford housing where they work. In a Homeshare scheme in Oxford, gap year volunteers live in with older people for mutual support during their first experience of living away from home.

The Homesharer provides an agreed level of help and support to the Householder whilst living in their home for an agreed period of time. Homesharers are not charged rent, but usually agree to contribute to household bills.

Gillian had a house; Neil needed somewhere to live. Gillian was worried about being alone and the responsibility of keeping things working; Neil, who does not own a home, was semi-retired, and could fix leaking taps. Gillian is 88, Neil 61, and they found each other through Homeshare. Today they share Gillian’s beautiful red-brick converted barn in a West Sussex village, with its beamed sitting room and fruit trees in the garden. No money changes hands, but Neil drives Gillian to doctor’s appointments and the supermarket and provides practical help around the house. He is a reassuring and useful presence, both physically and psychologically.

Gillian says, “We both put our names forward for Homeshare and, after vetting, it was decided we might be a good match. We met first in a neutral place, at the house of old friends of mine, then we had a couple of meals out. We haven’t got a terrific lot of things in common, but perhaps that’s why we get on. I think I get more out of it than Neil does.” (This story is from Agebomb – see the link in my blogroll).

There are 11 Homeshare schemes in six locations in the UK (see www.naaps.org.uk),  and we support the national network. Homeshare is small in the UK but much more significant in many other countries where there has perhaps been more investment and less red tape. So it was really encouraging to visit Crossroads Central and North London, who have just taken on the UK’s largest Homeshare scheme, which is supporting 80 matches very successfully and has big plans to develop the service. One of the reasons that Homeshare scheme has been successful

Mother’s plea to judge to sterilise pregnant daughter

I blogged about parents with learning disabilities recently, so this case, reported in the Guardian, caught my eye:

The mother of a young woman with learning difficulties who is pregnant with her second child broke down in tears as she pleaded with a high court judge to allow her daughter to be forcibly sterilised for her own protection.

The mother, known as Mrs P, told the judge that while she and her family supported her daughter, 21, and helped bring up her children, they could not make a commitment to any future babies.

It’s rarely a good idea to comment from a distance on individual cases and this one seems genuinely troubling. It turns on the woman’s right to make decisions about her relationships and desire to be a parent, when there is a question mark over her ability to understand the consequences of those decisions. It’s being heard by the Court of Protection, set up to adjudicate in complex decisions like this when someone is deemed to lack the capacity to make the decision for themselves.

I was suprised to read that the court hears between 20 and 40 cases involving “serious medical treatment” every year. It would be interesting to know more about those cases: has any research been done into the court’s impact on decision making in this area?

Another case has been attracting controversy recently in the UK and international press, involving a young man with a low IQ who was banned by the court from having sex, due to its ruling that he didn’t understand the health and emotional consequences. In this case, there was no one else’s well being to consider: the man was in a sexual relationship with another man he lived with in supported accommodation and there do not appear to have been concerns about that other individual. The court’s ruling was that the man did not currently have the capacity to consent to sex, but that, given his expressed desire to have sexual relationships, his support workers should educate him about sex and relationships, in order that he might gain the capacity.

In some ways, this is a fairly reasonable judgement. Importantly, it recognises that mental capacity is not fixed: the man doesn’t understand the issue now, so should be supported to gain capacity to understand it. There is an implicit criticism in the judgement of support services concerned enough to take a case to court, but who were not capable of working out that the individual was in need of support with sex and relationships. There was some silliness in the proceedings: the individual’s lack of understanding of contraception and where babies come from were cited as reasons for concern, which don’t seem that relevant to his relationship with another man.

Most of all though, I can’t help being struck by this contrast: thousands of pounds was spent and a high court involved in a man’s sex life, because of his lack of understanding of the health and well being issues. If we applied those standards to everyone else, how many thousands of poorly informed teenagers, or for that matter, people who make decisions about sex whilst drunk, would find themselves and their mental capacity up before a court?