What is Shared Lives like?

Paul and Lorraine have moved into Linda’s family home and share their busy lives with Linda’s family. Film: http://inclusivefilms.org/our-films/a-real-home-a-real-life/paul-and-lorraine/

Fond of them

We launched the first State of Shared Lives in Scotland report this week in Dunfermline at a conference co-chaired by Asif who uses Shared Lives and Sandy Riddell, Director Health and Care for Fife, who has agreed to champion Shared Lives and said he saw our sector as being increasingly part of the emerging picture of social care in Scotland: “It’s about empowering communities, it’s about choice and control and it’s about enabling people to live independently.”

The report (here) sets out what Shared Lives is achieving in Scotland and also how much more work there is to do, with a number of areas still without a scheme, in contrast to the 100% coverage in Wales and Northern Ireland, and near 100% in England. Some key stats are:

  • 324 Shared Lives carers supporting 434 adults in Scotland, of the 12,000 supported UK-wide.
  • A third receive long term, another third day support and about a quarter short breaks.
  • The largest schemes support 60 – 70 people but 50% of schemes are used by fewer than 20 people.
  • If all schemes matched the biggest, they’d support 400 more people with learning disabilities alone and save £3m.

Those numbers don’t mean a huge amount on their own, but the presentations from Shared Lives carers and Roseanne Fearon, who founded and developed the Fife scheme over many years brought it to life. Roseanne was joined by Ethel Foy who she described as the ‘catalyst’ in founding the Fife Community living scheme and has been a Shared lives carer for 30 years, since she was a nurse in a long stay hospital which was closing. Some of the people had no family or friends and Ethel suggested one or two could live with her, as they knew and trusted her. Roseanne said, “I started to think, why wouldn’t we do that? Because if you couldn’t live with your own family or in your own place, why not live with an alternative family and the key thing for me was that you would inherit all of their friendships and their contacts and that would be really inclusive.”

“There is no magic wand: the Community Carers will show interest and patience and little by little the person relaxes and begins to develop new skills, strengths and confidence – you see the people blossom.

“We then realised that if family carers needed breaks from time to time, why not use a Community Carer? It would almost be like extending your own family.

Kenny has lived with Ethel for 22 years now. “Kenny is now part of the family. He has a girlfriend but he says he’s not leaving until he gets married!” Ethel’s two daughters and grandson are now Shared Lives carers themselves.

The words ‘grow’, ‘flourish’ and ‘blossom’ came up a lot when people were describing the impact of Shared Lives. Shared Lives carer Shiri Vinten talked about how Shared Lives brought out sides of her family which she would never have known about without it. She told me she had asked her daughter, who now works in social care, whether that career had been her goal from an early age. Her daughter said, “It is something I’ve grown up with and have a lot of first-hand experience, so I believe it is only right that there is one less health professional… rather one more person looking out for the individual’s actual wishes. I don’t look at people from a professional perspective analysing their behaviour or medication requirements, rather who they are and what they like… They are just the same as you and me. People. I learned this through my mum and through Shared Lives.”

Judith Harris from the Fife Community Living scheme talked about the young lady who moved in with her three years ago, when Judith, who had retired from a long career in care and thought she’d be happy moving back up to Scotland and playing a lot of golf, decided she was bored: “I’ve seen this young lady blossom. She has a boyfriend; she’s discovered she can do things for herself, although sometimes like all young people she’d rather someone else did it for her!

“You don’t do this for nothing; you do get paid for it, but what you get back is greater than that: you can see someone having a life which they wouldn’t be able to do otherwise. You get such a reward from knowing people, being fond of them. It gives you this feeling that you are doing something, giving something back. You don’t have to have certificates, but you need a great sense of humour, you need a bit of patience, and you need a lot of common sense.”

This was a sad as well as celebratory event for us. We have been unable to renew the funding for our Scotland Officer, Angus Greenshields and we were only able to fund Angus’ role from reserves for a short time, leaving us without funded work in Scotland at a crucial time, when

‘No more talking: we want action!’

I’m just back from holiday and full of cold, so it was both an exciting and head-spinning day on Wednesday, which started with talking to a scarily large audience at a Nesta event (People Helping People – see previous blog) about Shared Lives and social action. At lunchtime I met up with a group of people with learning disabilities from CHANGE (www.change-people.org.uk) who had come to London to share the views from the Voices Choices conference in June. At that event, 100 people with learning disabilities had come together from all over the country, to talk about how to close down institutions for people with learning disabilities an ensure that there are no more scandals like Winterbourne View.

We were preparing for a summit later in the afternoon, hosted by Care Minister Norman Lamb and involving impressive array of leaders, including: NHS England CEO Simon Stevens; Chief Inspector of adult social care, Andrea Sutcliffe; CEO of ACEVO, Sir Stephen Bubb; Chief Nursing Officer, Jane Cummings; Co-chair of the Winterbourne Assurance Group, Gavin Harding MBE and Karen Flood from the National Forum for People with Learning Disabilities.

You can see some of the discussion and pictures from the summit in the #voiceschoices Twitter stream and you can find the four sets of proposals produced by people with learning disabilities on CHANGE’s website. It’s worth reading: Simon Stevens said that in four months of his new job it was the clearest, punchiest policy document he has yet read. Perhaps we should produce all policy documents in easy read first – it’s a great test of whether you really understand what you’re writing and reading….

The session started with some incredibly moving personal experiences from people with learning disabilities. The accounts of poor care, rape, workplace bullying and oppressively inaccessible services were, as one participant put it, shocking but not surprising. But as Karen Flood eloquently pointed out, what was moving was not just the suffering, but how each individual had turned their distressing experience into a powerful force for change. Each ended their presentation with ‘don’t’ call me a service user, I am a professional just like you’ and they were now in roles, including paid jobs, in which they trained people, made decisions and spoke at events here and abroad. Sean from CHANGE and others said that having a paid job meant he had the status and power which professionals had, rather than always being the only unpaid volunteer in a room full of professionals.

There are lots of proposals in the document, but the group had decided that in the limited time, they wanted to focus on proposal two which is about employing people with learning disabilities in making change happen. How many times do you go to a conference about people with learning disabilities and there are hardly any – or even no – people with learning disabilities speaking and leading sessions? How often do committees meet to discuss the services which affect every aspect of people’s lives, without a paid, trained professional with a learning disability there to share their expertise? The people at CHANGE believe that inclusion, participation, co-production are all just words unless people are employed, just like everyone else.

I didn’t do a great job during the part of the session I facilitated of explaining why we were focusing down so specifically on employment as the route to change, given all the other important proposals on the table, but the professionals with learning disabilities demonstrated why Read more of this post

People helping people

It was my slightly scary privilege today to help open up the excellent People Helping People event hosted by Nesta and The Cabinet Office today, which saw a discussion involving around 300 people on how to bring social action – people helping people – into mainstream thinking about public services, rather than seeing it as peripheral, or in terms of a stark choice between protecting professional services, or relying on volunteers and hoping for the best.

Here’s what I said:

Adult social care has arguably done a lot more than healthcare to end its reliance on big buildings as the places where support is provided. But whilst many more disabled and older people are supported in ordinary houses, on ordinary streets, we’ve learnt the hard way that community isn’t a place, it’s a set of relationships. People with learning disabilities are increasingly living in ‘community settings’, but many lack friends, and even experience hate and so-called mate crime. We also have an epidemic of isolation amongst housebound older people which professional support visits alone can’t fix.

Shared Lives carers are unique because they are trained and paid as part of a regulated social care service, but they share their own homes and their family lives with the adults they support. They are not paid by the hour – there is no clocking on and off. They are carefully matched with one or two individuals by their local Shared Lives scheme and they treat that person as part of the family, introducing them to their own family, friends and neighbours, so that the individual feels not just safe and supported, but valued and like they belong.

When Paul, who has a learning disability, moved in with Shared Lives carer, Sheila and her husband, Sheila helped Paul in many practical ways which more traditional services had failed to offer during almost fifty years of support. She helped him address longstanding health issues, and to buy and ride his first bike. But most importantly, she got to know him well enough to understand, although he has little speech, that his biggest dream was simply going out for a walk by himself. Sheila helped Paul with the practicalities of road safety and public transport, and she introduced him to her many friends and neighbours, so now Paul can safely go for a walk by himself precisely because he is no longer alone, he has friends.

Half of the 12,000 disabled and older adults using Shared Lives in the UK are living with their Shared Lives carer as part of a supportive household.

About half, such as older people with dementia, visit their Shared Lives carer for day support or regular overnight breaks in a familiar, homely environment. Shared Lives is being developed as a home from hospital service, an acute mental health service, and even a service for ex-offenders.

There are nearly 8,000 Shared Lives carers in the UK, recruited, trained and approved by 152 independent local schemes.

People using Shared Lives consistently report they make friends. Half go on their first ever holiday; a quarter join a club not exclusively for disabled people for the first time. Inspections show Shared Lives generates a tiny number of safeguarding concerns and alerts. It is also cheaper than other forms of care: on average £26,000 a year cheaper per person for people with learning disabilities. Whilst there is a scheme in almost every area, there remains a sixfold variation across the regions. If all areas caught up with those using Shared Lives the most, the number of users would triple to 36,000, immediately saving £150m a year. We would go further still: wherever long term support and accommodation is needed, an offer based in ordinary family homes should be one of the choices.

People cannot provide in depth support to vulnerable people without payment, training and back up, but Shared Lives demonstrates that it is possible to combine the paid and unpaid, the professional and the personal, through making new use of family homes, instead of building expensive institutions, and nurturing ordinary people’s skills and compassion, rather than relying solely on professionals to replace or mimic friendship.

We are told frequently about social care which doesn’t feel very social nor very caring. Some believe Read more of this post

Our voices, our choices, our freedom

Three years after the Winterbourne View abuse scandal was exposed, the lack of change remains depressing. This report from Mencap and the Challenging Behaviour Foundation makes grim but essential reading. In particular, some NHS trusts and clinicians appear to be immune to all efforts to raise their expectations and inspire creativity. The numbers of people with learning disabilities admitted to NHS institutions is actually on the rise. This is far from just an NHS issue, but it’s clear that NHS England and its new CEO need to get serious about their leadership role in addressing what is a worsening scandal. Even if the abuse at Winterbourne View was a rare exception, the deeper scandal was that health and care commissioners and the clinicians which wield such a great amount of power over the lives of people labelled ‘challenging’ felt that spending years locked away from family, community and anything resembling a life was an acceptable long term form of support, not to mention a defensible spend of £5,000 per week.

I’m not sure any sector, including the voluntary sector in which I work, can really hold its head high in the light of three years of inaction. Whilst a lot of the strongest calls for change are coming from charities, self-advocacy groups and grassroots activists like the 107 Days campaigners, not every voluntary sector and rights organisation in this space seems fully focused on building the pragmatic collaboration which is really needed, with small ‘p’ politics and positioning appearing to be an issue in some quarters.

One of the most promising initiatives however is the conference which people with learning disabilities are organising and leading, under the auspices of user-led organisation CHANGE and JK Rowling’s charity, Lumos. It takes place in Leeds on June 26th: Our Voices, Our Choices, Our Freedom! The conference will gather people with learning disabilities together who all share the wish to see institutions for people with learning disabilities finally consigned to history.

The minister, Norman Lamb, will be there, listening and speaking, as will Bill Mumford who leads the Post-Winterbourne View Joint Improvement Partnership. The thing which makes me think this event won’t be ‘the usual’ though is that it is being organised by and for people with learning disabilities, who are coming from all over the country. It’s still not unusual in the sector to see conferences about learning disabilities which fail to have a single speaker with a learning disability involved, let alone in the lead.

The people at CHANGE have a habit of getting you to think differently, in my experience. This is partly because they try to deliver as much of their work as they can through their ‘co-worker’ model in which someone with a learning disability works on equal pay and conditions alongside a non-disabled co-worker. This shouldn’t be unusual but it is: few ‘user-led’ organisations employ people with learning disabilities in paid leadership roles, rather than as volunteers (even organisations whose aims are to help people with learning disabilities find employment!). Usually conference audiences are dominated by managers and commissioners, but at the CHANGE event most people will be people with learning disabilities, with one or two commissioners who have agreed to attend not in their usual capacity, but as supporters of local citizens, whom they will then support to feed back to local leaders afterwards. There are also plans afoot for other ways for participants to spread the messages from the day.

CHANGE believe that increasing assumptions about the need for institutional care will be challenged only through people with learning disabilities taking paid and leadership roles in ‘their’ sector. That has to be right, because if there’s one kind of commissioner or inspector guaranteed to take a dim view of being ‘stuck’ for years in an institution, it would be a commissioner or inspector who has a learning disability.

Just part of the family – Guardian feature

Shared Lives Surrey features in a great Guardian piece on Shared Lives.

Since moving in with Alex and Greg, Clare has become rooted in the community, and made a strong network of friends – including reconnecting with people she went to school with. She has a big family, with “lots of sisters”, and sees them once or twice a week. “Since I moved, my life has changed. It has got better,” says Clare. “On Tuesday mornings, I volunteer at the Sure Start centre, with babies, and we do baby massage.” She goes to a community centre a couple of mornings a week, and is also doing an adult education course. And she has a boyfriend, who she met at a community group. “It was love at first sight.”

Full  article here.


An ownership revolution for public services?

Prof Peter Beresford of Brunel University chairs the user led network, Shaping our Lives. We sometimes find ourselves debating the practicalities of personal budgets and resource allocation systems, but also share lots of common ground when it comes to the values of personalisation. We co-authored an article published in the Local Government Chronicle website on May 14th and on the TLAP blog which argues for an ownership revolution in public services.

A sad day for community action – but not the end

This blog has been co-authored by Sian Lockwood of Community Catalysts, Alex Fox of Shared Lives Plus, Julie Stansfield of In Control, Ralph Broad of Inclusive Neighbourhoods and Sam Clark of Inclusion North. Our organisations’ partnership is called Inclusive Change.

The recent closure of the high-profile London and Suffolk Circles is sad news – but does not suggest that community-led action is an impossible dream as some commentators are saying.

At its most durable, community action is driven by the commitment and passion of local people keen to make a difference to their community. Take Debenham village in Suffolk for example. People realised that friends and neighbours with dementia were having to leave their community for care and came together to take action.   Over 100 people came to the first village meeting and agreed a long term vision of extra-care facilities in the village. They appointed an action committee and mandated them not just to deliver that vision but also in the meantime to ‘just do something’! With very little financial support from statutory sources, they have set up a range of activities and supports which help friends and neighbours with dementia to stay at home for longer. The pop-up dementia-friendly restaurant and local home-care agency staffed by local people snared my imagination but there are many other small and large initiatives that make a real difference to people’s lives – for example people really appreciate the local librarian’s visit to the bi-weekly Carers Café to help people access web-based information about dementia as well as the emergency weekend hotline staffed by volunteers. The action group (now 80+ strong) has learnt that initiatives work when they are led by local people – well-meaning help from professionals can be the kiss of death to a new project. As the co-ordinator of the action group Lynden Jackson says ‘professionals should only do what professionals can do – we’ll do the rest and tell them when we need them’

In our experience, the appetite for community enterprise is alive and well, but it needs a little encouragement and support to make a real difference to people’s lives. We know that sustainable enterprise starts with passion and a desire to make a difference – together with the kind of gritty determination to drive through the inevitable barriers that comes from an engagement of the heart. Local authorities do need to make an investment in that support – but just as importantly commit to getting out of the way when things are working well, and letting local people get on with delivering local solutions.

So the closure of initiatives as well-regarded and well-resourced as these Circles programmes is certainly something that should cause concern, but not despair. Community-action is still alive and well – and it’s the only hope for many of the lasting changes we need to see to our local areas.

Our five recommendations for community action that will last beyond the initial investment are:

  1. Community action has to be shaped and led by local people and their priorities: guidance and models brought from outside can be useful for giving people a sense of the possible, but must not be prescriptive.
  2. Community action initiatives must build on local initiative and must at all costs avoid replacing or undermining existing initiatives. Community asset mapping is always the first step.
  3. Community initiatives have to be affordable in the long term. Councils should review all existing and proposed initiatives to ensure they are sustainable, particularly where they have received significant initial investment or outside help.
  4. Where the investment case for community action is based on future savings offsetting high running costs, there must be clear evidence that the savings will be tangible and achievable. Local agencies must have a Plan B if savings aren’t achieved.
  5. Community action must have support at all levels: from the community, the officials and the politicians. Projects are most likely to be real and lasting where the initiative is community-led and addresses local people’s priorities.

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