Beginnings and endings

At our annual conference, our Chair Richard Jones and I always hold a discussion session with Shared Lives carers and others, which is an opportunity for people to make sure we have the issues which matter most at the front line on our radar. Here are some of the issues which came up: they give a sense of why Shared Lives is valuable, what makes it unique as a way of supporting adults, and also some of the challenges and the ways in which we do not always value and back up Shared Lives households in the ways we should.

We heard from a Shared Lives carer who supports people with significant mental health problems. The people living with her could easily be living in medical institutions without her support and doubtless her care saves the NHS a fortune. During a late night crisis, she shared the poor response she had received from the local mental health crisis team. I won’t share the details, but the theme was a frustratingly common one: the value of Shared Lives comes from the fact that it occupies a hard to define space somewhere between ordinary family life and a service, at its best, taking the best of both worlds. But too often, the rest of a service system sees someone settled in Shared Lives, breathes a sigh of relief, and disappears. Good Shared Lives schemes offer well-planned out of hours support, but sometimes the response needed in an emergency needs to come from another part of the system, and these teams are not always even aware that Shared Lives exists. We believe that Shared Lives carers should be seen as partners by health and care professionals, with emergency plans in place to ensure that they can get an effective response. This is essential to make Shared Lives fair, safe and sustainable for everyone involved.

We also talked about endings. Shared Lives arrangements can come to an end for all kinds of reasons: the person may have achieved their goal of getting their own place, or their circumstances may change. Things may change unexpectedly in the Shared Lives carer’s household. People live together for decades, sometimes until one of them dies. There is no set retirement age and I meet Shared Lives carers who are now in their 80s. Sometimes, an individual who has lived for many years with a Shared Lives carer who is now ready to retire moves in with their original Shared Lives carer’s adult daughter or son, whom they may have known all their lives. But complete continuity of that kind is not always possible. The Shared Lives carers we heard from felt that the difficult topic of endings is one we need to talk about more.

Endings can sometimes be enforced by social workers who assume that the individual’s goal should be to move into independence. Sometimes this is right, but at others, we see people who were happy in a household they have come to regard as their family home being obliged to live by themselves, sometimes unhappily or worse. Not many of us dream of living alone, so we should be cautious about assuming that is always the right thing for someone with a learning disability or another support need and we should listen to their wishes and goals, without making assumptions about concepts like dependency, which we may not be so quick to apply to our own lives.

At other times, the inevitability of an ending is ignored until it is too late to plan effectively for it. Some Shared Lives carers say that they feel guilty about the idea of ending, even though they are ready to end their active caring role and perhaps need to for health reasons. We have more work to do in this area: ensuring that people living in Shared Lives households feel supported to talk about choices, including endings, and can plan for the changes they dream of as well as the endings they wish will never happen.

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Can we escape the invisible asylum?

Since their origins in the Poor Laws, our ideas about helping people have been tangled up with feelings about excluding or punishing them. To become the subject of state support was once to cross a physical threshold: the gates of the workhouse, lunatic asylum or long-stay ‘hospital’ for disabled people. Many of those thresholds have disappeared into folk-memory, but the idea of separating people into those who are citizens of their communities, and those who are wards of the state, remains threaded through our health, care and support services, in ways which have become so familiar they are invisible.

The rules and assumptions of the invisible asylum can be felt in ‘community’ services which feel nothing like community. They start with assessments and means tests which challenge people to prove their level of need, often at the cost of believing in their independence. They are felt in approaches that treat families who have managed on their own for years, as though they are capable only of being ‘difficult’ for the very services which ignored them before they reached crisis point.

This is not to decry the value of our underfunded and undervalued public services. But for our welfare state to survive, we need to be able to see it clearly: the miracles our services can achieve in the operating theatre and their small, devastating failures to see the person underneath the patient’s gown. There was a time when most of us could ignore those failures, hoping that we wouldn’t find ourselves in need of state support, or would need it only for a brief period which we prefer not to think about. But now we live longer lives, with longer periods of ill health, frailty or social isolation. Whether those years – and in many cases decades – in which we need state support will amount to a good life is not solely in the gift of GPs, surgeons or social workers. It depends for most of us on the relationships we have with everyone we rely on: our family and friends, alongside people paid to help us.

So we need models of community support which focus as much on ‘community’ as ‘support’. Working for nearly eight years with the remarkable people involved in Shared Lives and Homeshare has brought into perspective for me the inability of many services to escape the asylums of their origins. I have also witnessed supportive relationships which do not sacrifice the social for the care, which recognise interdependence is as important as independence, and that caring is an emotion before it is an activity.

In my forthcoming book, A new health and care system: escaping the invisible asylum (Policy Press, February 2018) I outline a possible health and care system which would take the ethos and practices of asset-based and community-orientated support models and build a system and a sustainable economics around them. A system which would demand, measure and pay for the goals – wellbeing, resilience, confident households – we all agree we want, but seem to accept we cannot have. The people who currently shape services have proved themselves incapable of designing approaches to achieve those more human goals. They can only be co-designed with the people who make long term use of services, their families and workers. They would offer us more but would only work if we were prepared to have more asked of us in return.

Those services would be organised at a more personal scale, perhaps eventually eschewing the traditional idea of an organisation entirely, so the book focuses as much on what needs scaling down to human size, as on scaling up the innovations of which we need more. It starts with those failures we should see as inexcusable, yet ignore or dismiss, but it is rooted in the belief that we can and do care for each other, and that the only future for our public services is to create spaces in which people with support needs, families and front line workers can have the relationships we would all wish to have.

You can order A new health and care system: escaping the invisible asylum from the Policy Press. To register to attend the launch at Nesta on 28 Feb, which has done so much to support our work, click here. The Northern launch event with Greater Manchester’s Chief Officer Jon Rouse is at MetroPolis on 20th March.

The Green Paper

My think piece on the Green Paper is in the Guardian today:  Human stories will convince the public that social care is worth investing in

“More caring, social kinds of social care already exist. Some, such as Homeshare and Local Area Coordination, Community Circles and Wellbeing teams need scaling. Others, including Spice’s Time Credits and Community Catalysts’ micro-scale approaches, reach thousands or, like Shared Lives, are national. When people hear about these approaches, with their human stories of small achievements that mean the world, they connect with them. They see the value of ordinary life chances for disabled people or a good last 1000 days for older people. A green paper based on those stories could finally persuade the public that social care is worth investing in.”

https://www.theguardian.com/social-care-network/2017/dec/18/human-stories-will-convince-public-social-care-investing-in?CMP=share_btn_tw

No such thing as neutral

What does the social care sector need from academia? There has long been a gap between what national government says about the need for social care to achieve and evidence outcomes, and the reality of the kind of basic functional support that local government can and will buy. This gap has widened during austerity to and is now unbridgeable without significant additional funding for councils to provide adequate social care.

There is no ‘neutral’ position for academics to take on this. Do they look for outcomes which are set out in legislation but which many services, particularly for older people, are not asked or paid for and do not attempt to achieve? To whom do they ascribe blame for the gaps and failures they will surely find: hard pressed, underpaid frontline workers, providers which teeter on the edge of financial viability, local government commissioners who lack the money to buy what people need, or central government which has devolved spending decisions to the local level? Those are political judgements.

Funding bodies and the institutions which bid to them put the majority of their resources into researching the most prevalent models. That is pragmatic – those models offer large sample sizes and are the most significant budget lines in council and NHS budgets – but it also ensures that the evidence base for traditional models strengthens, whilst innovative models like Shared Lives, Homeshare, Community Circles, Time Credits or Local Area Coordination are locked into an endless cycle of small scale qualitative research which finds them to be promising but unproven. This in turn entrenches risk-averse procurement on a ‘better the devil you know’ basis: certain kinds of predictable failure look less career-threatening to commissioners than the possibility of success, particularly where ‘success’ would mean outcomes valuable to people but not valued by the broken economics of our health and care system.

I am honoured to be joining Birmingham University as an honorary senior fellow. Birmingham University’s school of social policy has the mission  ‘to change the world as well as to understand it’ – as 2017 draws to a close, it feels like the world has never needed changing more.

This is an extract from my blog for the university: https://www.birmingham.ac.uk/research/perspective/academic-decisions-for-social-care-sector.aspx

The right support at the right time

This is a guest blog from my colleague Ali Hall who works in our development team building new support for young people in transition to adulthood:

As 2017 draws to a close, I’m three months into my new role with Shared Lives Plus, helping local services develop Shared Lives for young people in transition. It’s been an enriching experience – a bit like walking in to a room full of people who think the same way I do, and quietly realising “So this is where you all are”.

The Care Quality Commission (CQC) recently published a report on mental health services for children and young people which says “The system as a whole is complex and fragmented. Mental health care is funded, commissioned and provided by many different organisations that do not always work together in a joined-up way. As a result, too many children and young people have a poor experience of care and some are unable to access timely and appropriate support.”

This fairly accurately sums up my experience of working with and within health, community and youth services. I’ve found that even where practitioners, including myself, can identify possible mental health concerns for young people, we may not know enough, we may not want to assume, or we may not have the time or the knowledge to adequately help. As CQC say this means we “may not be able to help children and young people access the right support at the right time.”

So, the big question is: who can? This is traditionally where family and close networks come in. But what about those people who haven’t got this kind of framework in place? This is exactly the kind of scenario where community cohesion, common sense and having a go-to person can provide a bridge to services.  It’s also where invested adults with an overview and understanding of that young person can help navigate the system and secure the support they need. Perhaps just as crucial, though, is applying these principles to prevention and recovery for people who have mental health issues of all kinds.

Shared Lives is one of these common-sense approaches.  It’s a model of care where adults and young people aged 16+ who need support and/or accommodation move in with or regularly visit an approved Shared Lives carer, once they have been matched for compatibility. Together, they share family and community life.

People make friends, get involved in clubs and activities, volunteer for causes and go on holidays. Feeling settled, valued and developing a new sense of belonging improve young people’s mental health – those intangible senses we have of being connected to others, of Continue reading

There for when things get tough

Alison Cooper, Shared Lives carer, blogs about why she supports people with mental ill health through Shared Lives. This blog was originally her speech to MPs and leaders in the health and social care sector at our parliamentary reception last week, kindly hosted by the Rt Hon. Alistair Burt MP, with speeches from our Ambassadors Michael and Dipan, Liz Kendall MP, ADASS President Margaret Willcox and Cllr Richard Kemp. Alison writes:

My life has been incredibly rewarding since becoming a Shared Lives carer, four years ago. For over 30 years I worked with adults with learning disabilities and people with mental health conditions. I have been able to see lives changed and people move into more independent ways of living.

alison and jonathan

We have always had an open house; I started sharing my home by supporting young foreign exchange students, before finding out about Somerset Shared Lives Scheme. I heard so much positive feedback about how vulnerable adults have the opportunity to live with and be part of families and be active within their communities. It seemed an ideal way to combine my skills and my home to potentially change someone’s life!

To become a Shared Lives carer I had to go through a robust process of application and induction. They took references, did security checks, checked my home. Somerset Shared Lives, my local scheme supported me at all stages and I built a professional relationship with my worker. Shared Lives carers work very closely with the Scheme and Shared Lives Plus who offer guidance and training where I needed it.

The first person who stayed with us needed lots of support. She would self-harm, attempt suicide and needed a considerable amount of emotional support due to an attachment disorder. Most of her life she had experienced rejection and instability. We were able to offer her a stable and loving home. As part of the matching process we were introduced to each other over a series of meetings, before she moved in.

Now I’m not going to tell you a story of how wonderful it all was and that everything was rosy, because it was one of the hardest times in my life. Not only for me, but for my family. It was challenging and exhausting, but with the support of the scheme and other professionals we gave her a time of stability, where she quickly became an important part of our family and community. She stayed with us for six months, before she moved on to a new home and since this we have stayed in contact with her and occasionally meet up for coffee.

So for someone with a mental health condition and attachment disorder I would say that’s not bad going is it?

Today (at the parliamentary reception), I am accompanied by Jonathon, who has been living with us for over two years. He has built really positive relationships with our family and now has an active week with his voluntary work and memberships to clubs and organisations. Johnathon’s main goal was to have some independence back in his life, so very shortly Jonathon will be moving into an annexe within our home so that he can have a more independence. Jonathon is a valued member of our family and community, making positive changes to his life and others.

The reason I am here today is to share with you the passion I feel for the work that I do and that so much can be achieved. Shared Lives is about supporting people to become a part of families and communities and with this comes, independence, self-worth and respect.

So! When you’re walking down the street next time and you see the unkempt person walking around that looks slightly odd, smelly and isolated from the world, take a moment to think that could be you, a family member a friend and all just because there was no one there for you when things get tough and you cannot cope with your world and others around you. That’s what Shared Lives are they are there for when things get tough.

We need to raise awareness of the benefits that Shared Lives creates and the positive work that is undertaken by many Shared Lives carers across the country. The work we do is life changing and rewarding for ourselves and for the people who come to live in our homes; their families too.

At a time when Local Authorities are struggling to provide services for vulnerable adults, due to rising costs, why is no one looking at Shared Lives, singing its praises, shouting about it? It’s quality, affordable care for vulnerable people. Councils and social workers, discharge nurses and commissioners need to use more of Shared Lives.

History

Our 25th anniversary conference this week was the biggest we’ve ever had with 220 people. It saw us returning to Liverpool, where on the 5th October, 1978 our founder Sue Newton MBE established a Boarding out Scheme for the Elderly, with Liverpool Personal Service Society, a charity now called PSS (person shaped support) and still providing Shared Lives. Sue, my predecessor Sian Lockwood OBE and I gave a short talk on the modern history of our movement and our hopes for the future. Of course, Shared Lives dates back to 14th Century Belgium and Homeshare is an adaptation of intergenerational living which has been a way of life for many throughout human history.

At times like this I’m very conscious that those of us involved in Shared Lives and Homeshare today care for two linked movements which have been built by the small acts of kindness of thousands of people we’ll never meet. We owe it to them to take the time to understand the values and ethos of those two unique models just as deeply as the people within Shared Lives and Homeshare households get to know each other. We need to understand the ethos of sharing home and family life, the practices which make it work, and its deep wisdom.

In contrast, lots of things in life are speeding up. We can see that in care and support where the shortest care visits are now only 15 minutes. Barely time to get in the door, certainly no time for a chat as a rushed and harried worker tries to take care of someone’s most intimate support needs before rushing on to their next client. These services might save money in the short term, but the cost in loneliness and health problems further down the line is incalculable. As public services reach breaking point, we are seeing more and more pressure for quick fixes and cut price care. But throughout our history we have seen the value of working at people’s own pace, moving slowly at times in order to do the right thing. Real care is not just the activity of caring, it is the emotion of caring too.

Our organisation has changed in many ways over the last 25 years, with a new name, many new faces and work which is bringing Shared Lives and Homeshare to entirely new groups of people. Our conferences are always co-led by people with lived experience and this year our Ambassadors led a session alongside Liverpool’s social services Director Dyane Aspinall in which the whole audience thought about what in the Shared Lives model we should keep, what we should stop doing and what we should develop (‘bag, bin or trolley’). Our latest developments have included working with the Department for Education on Shared Lives for care leavers and with Safe Lives on Shared Lives for women who have survived domestic abuse. We have seen the number of Homeshare organisations double as part of a national partnership funded by the Big Lottery Fund and The Lloyds Bank Foundation, with news of the first ever Homeshare match in my home town of Leeds coming during the conference.

But the idea of what one Shared Lives scheme calls simply ‘a heart and a home’ has not changed and nor will it ever. In 25 years’ time I hope our successors are celebrating a movement which see everyone offered Shared Lives, Homeshare and perhaps some new shared living models we haven’t thought of yet, with tens of thousands of people living well as a result. But I hope that their organisation, their sector, their movement, feels just as people-sized and as personal as Shared Lives and Homeshare feel to people today.