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.

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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

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.

 

High Performance Failure

Every public service organisation has the potential to forget its purpose – working for the people who use its services – and instead being run for the benefit of those who work for or lead it. This happens in poor services through incompetence or laziness, but it also happens in high performing services, which get seduced by their own reflection.

The recent scandal of St Olave’s school, found to be unlawfully expelling sixth formers whose first year results looked like they might bring down the school’s A level results and threaten its league table position, is an example of this phenomenon. This was a state school, spending public money, which was lauded as one of the best, but which was in fact becoming in some ways one of the worst: wilfully failing and damaging young people at a crucial time in their education. This now appears to have been the practice of a number of ‘top-performing’ schools, who presumably shared the view that their league table success, and accolades for their leaders, outweighed the importance of harming those pupils seen as inconvenient. Arguably, this ‘wheat from chaff’ view of children is just a reflection of a wider crisis of values within the education system, with its lingering fondness for selective schools.

The school system has some features of which make this ‘high-performance failure’ more likely. The head teacher and the education system places huge value on the ‘heroic leader’, with ‘super heads’ wielding unchecked power. 2016 Harvard Business Review research looking at hundreds of heads showed that the most lauded head teachers, who made dramatic short term gains in academic performance, often through excluding more pupils, left no lasting legacy of success, but probably a trail of destruction as they removed ‘problem’ pupils and staff who disagreed).

Governing boards can lack real power, with parental voice limited or non-existent. Despite talk of empowering pupils, the focus of most school policies is on their compliance to rules set by others. An extreme example of this was circulating the internet today: the behaviour policy of an academy school, which, whilst clearly starting with the laudable aim to raise young people’s level of ambition (speaking clearly and confidently in full sentences, for instance) had strayed into an Orwellian nightmare: shy pupils could expect to be punished for speaking too quietly (city hypothetical future job interviews, this would make them appear ‘not that bright’) or even failing to smile enough, which was ‘ungrateful’ and ‘negative’. Despite glib slogans about how successful this would make children (“We’re Charter. We’re smarter”), it’s hard to see what leadership or creativity skills could be learned from being subject to such a monoculture.

This is partly a product of the gap between simplistic notions of success and quality in the education system, and what makes a diverse group of children not just as academically successful as they can be, but also as happy, kind and resilient – which are outcomes either unmeasured or which take second place to results. We also see this gap in adults’ services which are ‘high-quality’ but fail to help people achieve wellbeing or build resilience. Continue reading

The Asset Based Area 2017

This new Think Local, Act Personal resource started as a blog post here. Thanks to the TLAP team and its Building Community Capacity network, along with inspiration from local areas such as Wigan (see the Wigan Deal link below), it has now become a how-to guide giving ten pointers towards becoming an Asset-Based Area. Here is my blog for the Dept Health social care blog on the paper:

A GP noticed that one of his older patient’s appointments were increasing, and felt that this was not for medical reasons, but due to her isolation which had worsened following a bus service closure. He linked the lady to her Local Area Coordinator (LAC).

The coordinator helped her to build more links and activities in the community to reduce her isolation and to approach a community organisation which ran a community bus service. Her increased support networks meant she felt less reliant on her GP.

They were also felt to be key to her quick return home from hospital after a heart attack.

The LAC helped link the community organisation to colleagues who gave support for a successful bid for a new community bus service.

At a time when primary care services are feeling under huge pressure, it can be hard to argue for new approaches and creative thinking. But this story shows that, with the right help and a positive mindset, someone possibly viewed as a ‘problem’ can not only find ways to help themselves, but their new connections can also lead to benefits for the whole community.

LAC is an example of an asset-based approach, which, like all similar approaches, starts with questions like, “What does a good life look like to you?” and “What can we do together to pursue it?” Coordinators have the time and remit to get to know people: not just what they need, but also the goals and capabilities they and those around them can bring.

Sometimes this means that someone accessing a service will need less formal support.  However, asset-based thinking shouldn’t be limited to ‘informal’ or voluntary organisations. Nor should it be seen as only relevant to preventative services. It needs to be embedded across the whole system, including in approaches to supporting people with significant health, care or other needs.

Shared Lives carers, having been through rigorous approval processes to join local CQC-regulated schemes, are matched with adults needing support, such as people with learning disabilities, mental ill health or dementia.

This is not a referral process: matching means both parties getting to know each other and making a positive choice to share their lives. The adult either moves in with their Shared Lives carer or visits them regularly for short breaks or day support.

James has significant learning disabilities and mental ill health. He has spent significant periods in institutional care and still needs some hospital stays, but his life with his Shared Lives carer Phil revolves not around the times when he is most unwell, but around the day-to-day things he and Phil both enjoy doing such as fishing and going to the greyhound races.

The Asset-Based Area was coproduced with input from many people and organisations working in asset-based ways, from the Think Local Act Personal national network for practitioners and commissioners who share an interested in Building Community Capacity.

We wrote it because we cannot successfully or affordably add in asset based approaches around the margins, whilst ‘core business’ remains unchanged. We need whole areas to take up the challenge of becoming asset-based, resetting their relationships with local citizens, as Wigan council and a few others attempted. It is time for steady, incremental, whole-place change: it’s all or nothing.

Right on the Money

“My mother has been lonely for 35 years, but no longer since she has been Homesharing. The scheme in Oxford needs to be more widely publicised so that more people can benefit” Daughter of Householder. Shared Lives Plus Friends and Family Survey 2017

In Homeshare, two people who would not normally meet each other are helped to get to know each other and become housemates. Usually an older person who has a spare room and who wants a little help around the house or some companionship is matched with a younger person who is looking for somewhere affordable to live. When a good match is found, the younger person moves in and contributes to the bills but instead of paying rent, agrees to provide a little help with, for instance, household tasks which the older person is starting to find difficult. With funding from Lloyds Bank Foundation and the Big Lottery Fund, we are working with local Homeshare organisations and national partners including Age UK to bring Homeshare to many more people.

Although Homeshare does not attempt to provide personal care to its older participants, Homeshare is often thought of as a way for a ‘vulnerable’ older person to get support and as a way to tackle loneliness in later life.

In reality, it’s more complicated than that. Research by the Co-operative and the British Red Cross has identified that loneliness can affect people of all ages. For instance, the report identified that nearly a third of young new Mums experienced significant loneliness at a challenging time in their lives. North London Cares and South London Cares, which also brings younger and older people together, found that people in their early twenties were the second loneliest group, after older people. Anouck, coming to England from her native France to live for the first time, lived with Doreen and their Homeshare arranged by PossAbilities in Rochdale is featured on BBC’s Right on the Money on Wednesday 19th July. For Anouck, Homeshare with Doreen was about much more than accommodation; it was the ‘nest’ to return to each evening and a way to get involved in local activities, with Doreen who also got out and more involved in local life than she had in a life which had been very home-based as an unpaid carer to family members for many years.

doreen and anouck
Doreen and Anouck

Just as we can all experience loneliness at different times in our lives, we can all become ‘vulnerable’. The careful selection and safeguarding procedures of Homeshare organisations have been developed in recognition of the particular concerns many older people may have about house-sharing, but the model avoids applying a blanket ‘vulnerable’ label to everyone over 65, or assuming that no younger person ever feels vulnerable. This puts Homeshare organisations in an unusual place for a charity (but a very normal one for, say, a dating service or a commercial home-sharing service such as AirBnB), which is recognising that there can be risks in sharing a home, and enabling two people (and often, their families) to understand them and manage them, but not trying to take over: the participants ultimately decide whether to take part and with whom, and they develop their own version of the standard Homeshare agreement, and taking responsibility for it, with the local Homeshare organisation on hand if they run into difficulty.

This approach has a strong safety track record but also creates space for the only real cure for loneliness, which isn’t in the end a volunteer or even a befriending project (useful as those approaches can be): it’s a friend.

I love that I am helping my householder and knowing that I am having a positive impact on her happiness. I love the stories that she shares with me of her life and experiences.”.  Homesharer. Shared Lives Plus Householder and Homesharer Survey 2017

Do the right thing

There is lots of discussion at the moment about self-employment, exploitative employment and the ‘gig economy’. Lots of people love being self-employed: it can (and should) mean being able to choose when and where to work, or with whom, and working with lots of autonomy, rather than with close supervision by a manager. You don’t get the continuity, pension, holiday pay and other benefits of being an employee, but you get more freedom. There are workers such as Uber drivers and Deliveroo couriers who are designated as self-employed, but who have claimed that they are really employees, who have to work when and where they are told, at a rate fixed by the organisation they work for, with penalties if they turn work down. Meanwhile, some care workers have claimed that they are not being paid for all the work they do, particularly if they are required to be ‘on call’ or to sleep at a service they work at, without being paid an hourly rate for that. And some foster carers, with an unclear self-employment-like status, are demanding employment rights, because, again, they feel that their work is controlled, not autonomous and some feel that they are underpaid for what can be demanding roles which demand long hours of hands-on care, with little redress if they feel unfairly treated.

These disputes and court cases will no doubt run and run and I’m not going to try to give any opinions on them, but we’ve watched with great interest and some anxiety, because Shared Lives carers are self-employed workers, whose employment status is often compared to that of foster carers. Shared Lives carers go through a three to six month approval process before being matched with adults who need support so that they can share home and family life. The individual moves in with the Shared Lives carer or visits them regularly, either way being treated as ‘part of the family’.

In some ways, the focus on bogus self-employment feels helpful to our sector. When Shared Lives is done properly, Shared Lives carers choose who they work with, they always use their own home (even if only as a base for day support) and they work with a high degree of autonomy, not according to rigid timetables, for instance. All of these factors are indicators of genuine self-employment. In some areas, the model has come under pressure due to cuts, which has led to the local scheme being asked to cut corners or ignore parts of the regulated model:

  • Despite an ombudsman’s judgement to the contrary, some commissioners want to regard Shared Lives as a 24/7 model of care, which would entail the Shared Lives carer potentially ‘working’ 24 hours a day. Where someone needs round the clock hands on care, they should be offered separate day support and in some cases, several Shared Lives carers work together to meet high support needs whilst everyone still feels that they are part of family life, not a traditional service.
  • Some areas are under pressure to shortcut the matching processes, which would result in less choice for both individual and Shared Lives carer.
  • One area recently raised the idea that Shared Lives carers should only be paid for the hours they are actively providing care whereas our good practice guidance suggests that Shared Lives is not paid by the hour and should involve at least four weeks’ paid breaks a year to be sustainable.
  • Many schemes constantly have to fight against a creeping tick box culture, which would replace the autonomy of Shared Lives households as they pursue ‘ordinary family life’, with a service mentality of closely-supervised staff and constant paper trails.

These pressures on the integrity of the model are based on a false economy: Shared Lives is an average of £26,000 lower cost per person per year when it is done properly, with all costs taken into account. The saving, which doesn’t even include savings which might be associated with better outcomes, is based on Shared Lives carers and their families choosing to contribute far more to people’s lives than they could be obliged to by a contract in relationships which can be lifelong if well set up.

Despite the complexity of the law, there is a useful simplicity at the heart of these questions: any of the above actions which undermine the Shared Lives ethos would also undermine the self-employment status.

The message to our sector – and perhaps others – is clear: don’t try to have it both ways. If you treat Shared Lives carers at times as self-employed and at others, as low status employees, expect expensive court cases along with all the other risks of the model not being valued and followed. On the other hand, spend what are usually modest amounts of time and money choosing, valuing and supporting households, and rewards multiply, as people live happy, low maintenance lives for decades.

The legal arguments will always be complex (to address that, we are working with legal firm Clarion to produce new guidance for our members), but you don’t need expensive experts to tell you how to avoid calamity: just do the right thing.