Learning the economics of the economy of regard

35 social care professionals, local authority representatives and policymakers discussed reforms to the draft Care and Support Bill at an event hosted by the Royal Society of Art’s 2020 Public Services Hub. My guest blog about the event and Bill is now on the RSA website:

There can be few people unaware that there are NHS reforms afoot in the UK. Yet few are aware that the most sweeping social care reforms in post-war history are now taking place, with existing ‘poor-law’ based social care law to be replaced by new legislation outlined in the draft Care and Support Bill. The Care and Support White Paper which preceded the Bill set out a new vision for the ‘personalisation’ of social care. This takes the idea of individuals having an individual choice of service and control over their lives as read, but recognises that even a well-funded, well-tailored service does not always add up to a good life, particularly if your support needs are social rather than entirely physical…

Read the full article here: http://bit.ly/XU0Vgx

A patchwork quilt

Think Local, Act Personal, the sector-led partnership which is helping providers and councils to push forward with personalisation, has teamed up with SCIE to publish “Improving Personal Budgets for Older People: A Review” which you can find here: http://bit.ly/YyWRZR. Some of the findings are based on data from the ADASS personalisation survey (2012) of councils and the 2011 POET survey which is a large annual survey carried out by Think Local, Act Personal of people’s experiences of personal budgets.

It’s quite common to hear people say “personal budgets and Direct Payments don’t work for older people” so it’s useful to have some real evidence to look at in testing whether those doubts are based in reality, or in assumptions about older people and choice. The report finds that in some areas many more older people are using personal budgets, so the argument that older people aren’t interested or can’t use personal budgets does not seem to hold up. However, that picture is really patchy and the report finds lots of barriers to older people taking up personal budgets, including confusing processes and lack of support to make choices; lack of understanding about the things personal budgets and direct payments can be spent on (not just Personal Assistants) or little real choice of new provision; and reluctance on the part of older people or their families to take on responsibilities like being an employer. All of these factors are relevant to younger people as well as older people, but perhaps the most telling differences are that some of the powerful features of using a personal budget for younger people – such as taking that budget as a cash Direct Payment and having complete control over a care package or a team of staff – appear not to be so relevant or available for older people, who are often working with lower budget allocations and who may be looking for quality and consistency of service above control for its own sake (although the report cautions against the risk of these conclusions being influenced by ageist assumptions.

Of course, if the high numbers of older personal budget holders in some areas were present everywhere, we would be talking about how well they work for older people. The apparent success in some areas could mean that

The right to live untidily

I chaired two lively fringe meetings at the Lib Dems and Conservative party conferences at the invitation of the ResPublica think tank. Both discussed the relationship between choice and making social care personal. Most people at these discussions were positive about the principle of being able to make choices about services. One attendee pointed out that “those with least control or power should have the most choice” and there was concern about the extent to which cut backs in advocacy services were stymieing attempts to redress the power imbalances in our system, or replacing them with new power imbalances and bureaucracies, or even “new lies”, in which people had the illusion of choice, but no new services from which to choose. There was also concern about the “lie” of offering choice without responsibility. Council and NHS Finance Directors remain legally responsible for balancing budgets and are understandably reluctant to create a system in which individuals might be able to make expensive choices which take no regard of limitations on resources.

One way past that impasse is to recognise that a policy of introducing personal budgets and Direct Payments does not, on its own, change the status of people who use services. Discussions can still be about what “we”, the expert professionals, are going to let “you”, the service user, have to meet your needs. Instead, we need to create a system of shared responsibility for the use of resources and this is often done best where individuals are helped to pool budgets, or to come together with community groups, so that there can be a collective discussion about how people will make best use of all kinds of resources, including money, but also including people’s time, and the collective expertise of people who use services, their families and communities. The key to a good life is not just what we choose to receive, but also what we choose to contribute to those around us.

One participant told a story to illustrate how far we can sometimes be from that picture. An older person was entitled to a Direct Payment to buy support. Her pet dog

“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

Twenty years on: naturally radical

It’s Shared Lives week this week, with local events at 152 Shared Lives schemes across the country to celebrate the incredible achievements of Shared Lives carers and the people who live with or visit them in their family homes. The week started with our sold-out England conference and 20th Birthday celebrations, which led me to reflect upon the history of Shared Lives.

We can trace the idea of sharing home and family life with people who need support at least as far back as 14^th Century Gheel in Belgium, when the town, which had become a place of pilgrimage for people with mental health problems, instead of building a large asylum outside of the city walls, decided to organise itself into a boarding out scheme which still survives today. Yet despite that 700 year history, this year, Shared Lives Plus was named as one of ‘Britain’s New Radicals’ by the Observer.

So we can’t claim that sharing your home and family life with someone who needs support is a new idea, but is it radical? I argued at our conference that Shared Lives carers are indeed radical. We are, I think, increasingly compartmentalised and isolated, as we try to manage the pressure of busier and busier lives and in many cases more demanding workloads. My partner and I find ourselves booking time with friends months in advance. My natural inclination is to have large walls between my work life, when I’m often away from home, my family life, and my ‘me time’ which usually involves reading or watching TV on my own when the rest of the family is in bed. People are often suprised to hear that there are about 8,000 Shared Lives carers in the UK, who have been radical enough to make caring for others not their job, but their lifestyle.

I think most Shared Lives carers would reject the notion that they are radical. He or she “is just one of the family” is something I hear very often. Sue Newton, our President, who was instrumental in founding our organisation and the sector in Liverpool in the late 80s/ early 90s, agrees and suggested at the conference that sharing your life is, in fact, the most natural of ideas.

So why does it seem so radical to so many people? This is partly because of the way that social care has developed. It has become

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.”

It’s better when it’s personal

I’m often asked about which kinds of social care services can be provided on a micro-scale. The answer, in my view, is all of them. As these two examples of micro-enterprises illustrate, services for younger and older people can all benefit from feeling much more personal.

After spending many years in further education and social care and seeing the limited opportunities that young people leaving post-19 education have to experience adventurous activities, Helen and Terry decided to set up The Adventure Service. Their services include environmental studies, mountain biking, bushcraft and hill walking offered on a day service basis for up to 12 people. They also offer outreach services working with people who need more direct one-to-one input to become more confident in accessing mainstream services.

They support people in Nottinghamshire and Derbyshire with a range of support needs including learning disabilities, autism and mental illness. All the services are paid for either by individuals’ own money or their personal budgets. They also provide services to schools to enable students who have support needs of some kind or are vulnerable to access adventurous activities. www.theadventureservice.com

Izabela, following on from her many years of experience as a qualified nurse, has set up her own small care and nursing agency for people in the Thames Valley area. Henley Care Ltd. specialises in providing nurses and carers for 24 hour live in care, as well as offering a daily visit service.

Izabela believes that care at home is not a universal panacea and may not suit everyone, however it is possible and can allow people to remain in the comfort of their own home, surrounded by friends and familiar objects for as long as they wish. She offers community health services, care in people’s homes and supported living with specialisms in dementia, diagnostic and/or screening services, mental health conditions and physical disabilities.

The business is run on the principal that everything comes down to the quality of the individual providing the day to day support and whether they actually care by treating people with respect and taking a real interest in all their needs. www.henleycare.com

White Paper highlights Shared Lives and micro-enterprises

Today’s social care White Paper highlights our members’ Shared Lives and micro-enterprise work as ways in which the social care system can move from a crisis-only service, to one which is preventative and focuses on people’s well-being and how connected they are with those around them. It also notes that Shared Lives can help people live better lives whilst saving on average £13k per person, per year. If every region used Shared Lives as much as the North West of England, the saving in England alone would be £155m per year.

Here’s our press release:

New figures show opportunity to save £155m pa when people with learning disabilities move out of Winterbourne View style ‘hospitals’ into family homes.

Social care White Paper endorses the Shared Lives approach.

Although little-known, around 8,000 registered Shared Lives carers now share their family and community life with an adult who visits them instead of visiting a day centre, or moves in with them instead of living in a care home. Shared Lives outperforms all other forms of adult care in government inspections and is also cheaper, but remains scandalously under-utilised.

Today’s social care White Paper highlights Shared Lives as a key part of achieving a more community-based care and support system, which relies less on traditional paid-by-the-hour services.

New analysis of NHS figures by Shared Lives Plus shows huge regional variation in the use of Shared Lives. In the North West, Shared Lives represents 18% of all live-in/ residential learning disability support, whereas in Eastern England the proportion is only 2.5%. With each Shared Lives arrangement creating an average annual saving of £13,000, bringing every region up to the level of the best would quadruple the number of people with learning disabilities and other long term conditions living in Shared Lives to 16,000, saving the health and care system £155m every year and creating enough capacity to enable the closure of virtually all remaining ‘special hospitals’ of the kind seen in last year’s exposé of the Winterbourne View facility.

Alex Fox, Shared Lives Plus Chief Executive said: “Whilst social care often only makes the news for the wrong reasons, Shared Lives remains the sector’s best-kept secret. We know that people with learning disabilities can live happier, more fulfilled lives in ordinary family households than in large institutions, so it is scandalous that the NHS and some councils continue to spend our money on completely inappropriate institutions. In one recent example, a Shared Lives arrangement costing around £400 per week was used instead of a secure facility costing £5,000 per week. In another, a man previously labelled ‘too challenging’ to live outside of a residential unit he said he hated, moved to live successfully with a Shared Lives carer, saving the council £45,000 a year in the process.”

There is also huge untapped potential for developing Shared Lives with new groups of service users to make even greater savings. Whilst 23% of Shared Lives users in London have a mental health problem, five English regions offer no Shared Lives arrangements whatsoever to people with severe and enduring mental health problems, with institutional services still the norm.

Sian Lockwood, Chief Executive of Community Catalysts said: “The Shared Lives sector has doubled in size over six years but there are still only 4,310 people living in Shared Lives households. Half a million people live in residential care homes. Some councils predict that the cost of adult social care alone will represent 100% of their budgets within a few years, unless they make radical changes to the way they support vulnerable people. There is a Shared Lives scheme in nearly every council area in the UK but whilst some areas are currently doubling the size of their local scheme, others remain largely unknown and under-used.”

Alex Fox added:

Making the right connections

My blog on taking an assets-based approach to healthcare reform, particularly where public health and other behaviour changes are required, is on PublicService.co.uk here: http://bit.ly/LJRVab

Simply improving the way we commission existing health services will not achieve what society really requires, says Alex Fox, chief executive of Shared Lives Plus. He argues for a more meaningful reform of social care to challenge the primacy of hospital-based treatment….. http://bit.ly/LJRVab