Meet the sharers

Our new Twitter project is @MeetTheSharers, a brand new, year-long, rotation curation project from @SharedLivesPlus. Every week, for the next year, we’ll be handing over this account to a different Shared Lives family, so they can tell you all about their lives, in their own words.

The Portwoods are no strangers to the media spotlight, they were featured on @GranadaReports in February and now get recognised on the street. See the ITV news film here.

Emily and Allen provide Shared Lives support through @meetmacintyre, one of a network of Shared Lives schemes across the country. Emily is a full time Shared Lives carer, she loves the gym, Slimming World healthy eating plans, cooking, driving to nice places and walking. Allen is a vehicle technician and owns his own garage, he works each day to assess and fix cars then comes home to his Shared Lives life.

Molly is 26, she works with children in an after school club, loves the gym, yoga, Pilates, and Zumba. During lockdown she has baked, walked and kept her friendship group going each Wednesday. Beth, on the left, is 22. She doesn’t live with Emily and Allen, but comes to visit them several days a week as respite care.

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Tyler is 18 and is very much into his social media networking- he loves posting YouTube and TikTok videos. Tyler is an animal lover and is enrolled on a college course that involves learning about animals. Robert is 61- he is interested in films, he likes the musicals. Robert loves to socialise with people, he attends the Macintyre day centres and is looking forward to going back to the visual impairment centre when it opens up.

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It’s a cosy household, which also includes Emily and Allen’s sons (Spencer, Declan, Harley, and Jordan), dogs Bella and Cadbury, a handful of guinea pigs, and a tank full of fish.

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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

“It gives me a good feeling inside”

This year’s Shared Lives Plus conference was co-chaired by Paul Croft, who lives in a Shared Lives household and Richard Jones, a Director of Adult Services and one of our trustees. This is what Paul told the conference – he has kindly given me permission to re-print it here:

 “Good morning ladies and gentlemen.  I would just like to say how pleased I am to be here and would like to thank John Dickinson for asking me to Chair this conference.  I think it is a great honour and am delighted to be talking to you now.

I would like to tell you just a little bit about myself and how my life has changed since I joined Shared Lives and moved to Waterloo, just a few miles from here, to live with Geoff my carer with PSS and Bob who Geoff also cares for.

I was at Derwen College in Shropshire at the time and lived there in term time studying catering and office management.  At first I went to Geoff’s in the holidays.  I really enjoyed being at college but we were supervised most of the time and had very little independence. 

When I first went to stay with Geoff my care plan said that I wasn’t allowed to access the community without someone being with me.  I remember wishing I could be like Bob, who was a train driver before his brain injury and would go off regularly visiting places round the country.  At that time I even had to be taken to college at the end of holidays even though I had made the journey many times.

Geoff realised that my life was being restricted because of this and so we started to work on this problem.

I began by posting letters at the end of our street and then going to the shops and bank on my own.  We went out together on longer journeys but when I felt ready we decided that it was time to go on the train on my own.  The station is only 5 minutes from where we live.  I have a very good sense of direction and had no problem going places on the train and also learned to use the bus. Geoff and I have discussed this and both feel this was the real turning point in my life.

When I moved into Geoff’s permanently

Blossoming Forth in Middlesborough

Writing this on my way home from an event in Middlesborough run by our colleagues at Community Catalysts, which brought together people running, supporting or just generally interested in micro-enterprises. (There will be similar events in Sheffield and Bristol).

We heard from Chaz and Joanne, two parents who have set up Blossom Forth, a micro-enterprise which helps meet families’ specialist childcare needs, whilst also creating employment opportunities for parents who themselves have disabled children. Joanne explained that parents of disabled children often struggle to find childcare which can meet their child’s needs and are wary of relying on childminders who have no experience of disabilities or specific training. Blossom Forth teamed up with Tyneside Met College to provide a group of parents with training on everything from confidence, to disability awareness and time management. Some of the parents lacked confidence: as Chaz put it, “I felt very isolated and although I’d left school with 12 GCSEs and four A Levels, my goals took a back burner when I had kids and I didn’t trust other people to look after my eldest son who has additional needs. The course showed me that I can be more than only a parent.” Chaz is training to be able to provide childcare to disabled children, which will be her route back into employment but will also help her to support parents who are struggling with many of the challenges of which she has personal experience. Joanne and her colleagues have high hopes for Blossom Forth and bags of the faith and energy which all successful entrepreneurs need: “We didn’t have any start-up money or people with the right qualifications. Community Catalysts found us a solution which was to run initially as a service introducing parents to childminders and to do some market testing. I’ve no doubt that we will become a successful enterprise.”

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.

Independence means….’walk’

Paul the artist

Painting for Sam

Paul and his paintings

Registered Shared Lives carer, Sheila and her family have recently started to support Paul, who is 50 this month.

Sheila has helped Paul to get a bus pass, to learn to use public transport via Birmingham’s ‘Community Options’ scheme and about road safety, so that he can make use of the community for the first time in his life. Paul has started to access dental services to address long-standing dental health issues, which has improved his overall health. Paul has now bought his first bicycle and goes out for long bike rides with Sheila and her husband along New Hall Valley Park, enjoying the countryside. Paul’s regular day-time activity is helping on the allotments – ‘New Roots’ – run by Birmingham City Council.

He has become a visible and popular member of the community, having been supported to join several clubs and to get to know local shopkeepers, staff in the local library and even bus-drivers now know him by name. Sheila encourages everyone to ‘look out for Paul’ whenever he is out and about in the community on his own. Paul doesn’t have a lot of speech, but when asked if he understands what ‘independence’ means, he smiles and says ‘walk’.

Paul also joins in with activities, events and parties with Sheila’s family. Paul’s new passion is art and with the help of Sheila’s husband Tony – a day centre officer with a degree in illustration –  Paul  has found a talent for painting. The photos above are of Paul and Paul’s work, including his painting of cabbages on his allotment (entitled cabbage patch) which now hangs in pride of place in Sheila’s daughter Sam’s hallway in Surrey.

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,

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.