We have been campaigning with our members to persuade the Treasury to adjust their Self-employed income support scheme (SEISS) scheme, which replaces lost profits for self-employed people losing work during COVID-19, for Shared Lives carers, who can apply to the scheme, but typically aren’t eligible for any replacement income, because the Shared Lives tax break usually shows their profits as zero. This has left Shared Lives carers feeling unvalued and contemplating leaving the sector, just at a moment when we desperately need to sustain and expand home-based alternatives to hospital and care homes.

So we are utterly disappointed that the SEISS has not been adjusted by the Treasury to address this, despite our very positive engagement with the Dept of Health and Social Care, and the support expressed for the Shared Lives sector by the Minister of Care Helen Whateley and cross-party MPs, including the Shadow Health team and Labour party leader Sir Keir Starmer. We have been contacted by MPs of all parties as a result of the campaigning which Shared Lives carers have been doing on this issue locally.

In parallel to our national lobbying, we have been working with councils to encourage them to use their social care continuity funding to help Shared Lives carers who have lost income, and also the even larger numbers who are providing more support than ever to someone who lives with them, and cannot at present access day support services. We have many examples of councils doing this and we are talking with the Dept Health and Social Care, and the Local Government Association about how to help more areas to follow suit.

Money can be a touchy subject for Shared Lives carers. There are still areas where people have been caring without a pay rise for years: pre-COVID we were working on this with members, asking councils to sign up to a pledge to give Shared Lives carers the same pay increases as other social care workers. I’m struck by the attitude of one or two areas who seem to feel that because Shared Lives carers give so much of their lives, and don’t expect to be paid for every hour spent with someone, that they shouldn’t really care about money. Some of our members said recently that they feel treated with suspicion if they raise the subject.

The truth is that we all need to live. The fact that our members are often staggeringly generous shouldn’t be a reason to take them for granted, as one area did when they wrote a Shared Lives carer in her 70s to say that with day services closed, the person she cares for would be home with her all day now, and they expected her to provide this extra full time job of care on a ‘voluntary’ unpaid basis.

Shared Lives works so well because it allows people to separate the money that they are paid for the formal part of their role, from their relationship with an individual who many describe as ‘just one of the family’. Nobody goes into Shared Lives for the money. Let’s make sure during this crisis that money is not the reason that anyone has to leave the caring role they love.

Whatever it takes

The original assumptions in planning for COVID-19 in the UK were that a very large number of people would get it. It was known at that time that it was deadly for many older and disabled people. Presumably the plan was to keep older and disabled people, particularly hundreds of thousands of older people who receive social care, safe from infection. That could only ever have been done through a massive programme of safety equipment (PPE) and testing. That we are still playing catch-up on PPE and only a tiny number of the people who care for older and disabled people have been tested, gives the impression that as a nation we have abandoned a whole section of society to this illness. Nearly 1,000 people a day are dying in hospital, but we don’t even know how many are dying in care homes – don’t they count?

The government has, quite rightly, said it will do ‘whatever it takes’ to keep the NHS going through COVID-19. This isn’t just a message from Health ministers but from the Chancellor and the PM. We have not yet heard ‘whatever it takes’ to keep social care going. Put another way, we need the government to say, from the top down, ‘We will do whatever it takes to keep older and disabled people alive’.

We all have the right to have our voices heard

My new colleague Becky Viney-Wood has joined us as our first policy officer. Becky has been blogging as she meets our members and gets to grips with policy issues on numerous fronts. Here, Becky writes about advocacy and why we should think of advocates as being as necessary in court as interpreters for people who wouldn’t be able to participate without their help:

Two young parents with learning difficulties in Birmingham were deemed to lack capacity to care for their baby, and an interim care order was made…. Read more here.

Becky has also been  to meet some of our members in Milton Keynes. She’s inspired by their  support for each other:

Karen, Shared Lives officer, and I visited Tim, someone who uses Shared Lives care, for a spot check, to make sure that he is happy visiting his Shared Lives short breaks carer…. Read more here


Stepping into my own power

My colleague Meg Lewis is one of our Ambassadors, who has blogged about her experiences, interviewed NHS chief, Simon Stevens, speaks to national audiences (for instance, we are doing a double act on safeguarding for the DBS on March 12th), and contributes to our planning and thinking about improving the model. Meg and Nick Gordon from our communications team worked on this film, in which Meg reflects on her journey from hospital ward to shared lives, and now into her own place, which she shares with her dog, Flower. Meg went back to the psychiatric hospital where she lived for four years and talked with the clinicians about her journey: “I knew that I needed to feel a part of something and move away from clinical, boundaried care. Because those people do care, but when they go home they have to switch you off.” It’s a powerful and moving story about hope and, as Meg puts it, how to “step into your own power and change the course of your life.” Enjoy!

How would we know?

If an area becomes ‘asset-based’ in everything it does, how would you know? You would expect to see everyone – public services and charities; citizens and people with power – thinking, speaking and behaving differently. This is the second of three blogs written with the Chair of Think Local, Act Personal, Clenton Farquharson MBE, and available in full here. Last time, we revisited the Asset-Based Area (ABA) model which tried to distil down how an area can become asset-based in everything it does from strategy down to the grassroots, into ten actions, starting with mapping your local assets, and including sharing power with people who are usually excluded, and building a diverse range of community approaches which are now gathered in an online catalogue. Three years after the original thinking, we are developing the ABA model in more detail through the Social Care Innovation network.

In this blog, we want to think about how we would know that an area had become asset-based. What would we measure and how?

Greater Manchester has adopted use of system activity measures collected every quarter, combined with a range of personal outcome measures collected locally across the city region. These include measures already well-established across public services, such as health outcomes, measures of demand and cost, and wellbeing outcomes: recognising that wellbeing – living a good life in a good home and a welcoming community – is intertwined with more clinical outcomes.

Key Human Indicators

Many areas and organisations have Key Performance Indicators (KPIs). Perhaps every area needs Key Human Indicators. Are people achieving wellbeing? That usually means that people who need support are able to experience the right balance of independence and connection for them, which will change at different times in their lives. For workers and systems, KHIs will include warmth, kindness (as set out in Julia Unwin’s brilliant report) and dignity. Networks can be more important than bureaucratic service structures. In Shared Lives, friendships are seen as key indicators of wellbeing, so Shared Lives Plus’ national outcomes measuring tool asks participants how many friends they have and whether Shared Lives support is helping them make and sustain those connections, or getting in the way.

Read the rest of this blog on the Social Care Institute for Excellence website, in the Social Care Innovation Network’s minisite.

Inequality creates ineffectiveness

Youth Justice Officer and author Andi Brierley (@andibrierley) may regret posting such an interesting comment on my blog entry about coproduction – because of course I asked him to turn it into a guest blog. I’m glad I did anyway: this is such a powerful personal piece on why we need many more people with lived experience working in – and leading – our public services. It follows Rachel and Tim’s guest blog yesterday about more meaningful relationships in social work, both of these pointing to the fascinating conversations which are taking place across the adult and children’s services divide about the relationships we have – and those we need – between people offering and seeking support. Andi writes:

I was born to a mother living in a children’s home aged just 16. I spent time in care as a result of mum’s capacity issues leaving me and my siblings abused and neglected. I was excluded from school aged 15, addicted to heroin aged 16 and then exploited into selling drugs by older men. When I was eventually caught, I was sent to a Young Offenders Institution for 18 months. This sentence did little to address my life challenges and upon release, I served a further 3 sentences for offences that all related to drug and alcohol related offences.

I eventually started volunteering for the Youth Justice service in 2007, only two years after release from my last prison sentence. Having been granted an opportunity, I grabbed it with both hands and have worked in youth justice ever since, qualifying in 2013. I have also written a book ‘Your Honour Can I Tell You My Story’ about my experiences, in which I draw on my unique combination of 11 years as a service user and 13 as a youth justice worker, to argue that our institutional responses to disadvantaged communities, children and families do not – and cannot – work.

Let’s take the Criminal Justice System. The regulatory body of Probation and Youth Justice, Her Majesty’s Inspectorate of Probation (HMIP) is set up to regulate ‘risk management’ processes. Do these processes keep us safe?

According to a 2016 Ministry of Justice report, 25% of the adult prison population had experienced care and 42% had been excluded from school: they were known to services from a very early stage in their lives, and many excluded from school and criminalised in their care setting (see this 2018 DfE report). So risk management at that early stage was ineffective, and then, post-incarceration, the reoffending rate for children within 12 months of release is a high as 70%.

The most severe risk management tool is incarceration, which politicians want us to believe ‘rehabilitates’ offenders. However, rehabilitation implies that these individuals were once living a ‘normal life’, which the statistics above show was not the case, and the reoffending rate is currently 46% for all prisoners within 12 months of release. For prisoners serving short sentences, this rises to 60%.  I can’t find research on this, but from my lived experience, I think these will disproportionately be care-experienced prisoners: care experienced and traumatised individuals are more likely to be dysfunctional than organised armed robbers. The National Audit Office estimated in 2010 that this reoffending costs us as a tax payers, anywhere between 9.5 to 13 Billion.

So it seems hard to argue that the current Criminal Justice System is effective when dealing with children that have experienced childhood adversity. Research conducted by the US health maintenance organisation Kaiser Permanente and others found children that suffer abuse and neglect in the absence of an attachment to a positive adult show profound neurological damage. They found that that the more exposure to adversity, the more likely the individual is to experience teenage pregnancy, criminality, drug addiction, health problems and even early death. I can relate to this both personally, but also professionally. I am currently working with children that do not and cannot understand the impact of their environment on their own behaviour, yet we continually view them as a risk instead of doing more to change their environments. The criminal age of responsibility being 10 years old doesn’t take into account neurological impairments.

I believe that the root cause of this is the core belief of the criminal justice system that the children are making choices and therefore they can assist in helping them make better choices. This view is rooted in many professionals’ belief that they themselves would not commit crime, even faced with the environmental factors the children are facing. Let’s explore this even further. To become a professional in the care or criminal justice sector, you often require a degree, particularly if you want to rise to senior management level. Yes, there will be professionals that have faced adversity and even some that come from disadvantaged communities. However, they are extremely unlikely to have experienced the level of childhood adversity or transgenerational trauma the children in the criminal justice system have, particularly those that end up in custody. Currently, only 6% of Care Leavers obtain a degree between the ages of 18-21. The number of incarcerated children obtaining a degree will be considerably lower. This indicates criminal justice services, with some exceptions, are being shaped by a group which does not include people who know first-hand what it is like to be exposed to the environmental factors the children within it face.

HMIP recently inspected the service I work with and spent a week reading what we as professionals write on the recording system. They didn’t speak to the young people in reaching judgements about our practice. Now I see why, when I was a service user, I didn’t know the system was ‘managing’ my risk in this way. I was secondary: the institutional process was primary because that was what the regulators focussed on. But our failure to listen to or value service users goes a long way to explaining the ineffectiveness of the system in helping offenders desist from offending.

I am by no means the person with the answer, but I do have a unique perspective. I know for certain that professionals that haven’t experienced childhoods like ours should not take the view that they wouldn’t have been significantly challenged by such experiences. The Criminal Justice System needs to be built upon the findings of the Adverse Childhood Experiences research which can’t show the reason for a particular offence, which is a decision on an individual day, but does show clearly how a childhood like mine affects the individual’s life course and goes some way to explaining the root causes of the behaviour.

The system would become more effective if it was flexible enough to incorporate the views of people within the communities that the individuals come from. Lived experience is a skillset, so we must reduce barriers to work within the system itself, such as criminal record checks. Einstein said that the definition of insanity is continuing to do the same thing over and over,  expecting a different outcome. Co-production needs to be more than a buzz word. To create a more balanced, personalised and appropriate response to crime, which will keep us safe and cost less money, I have learned that we must fight the social inequalities and marginalisation faced by the vast majority of children who offend.

How did we do today?

I’m extremely grateful to Rachel Hughes, Lecturer in Social Work, Goldsmiths, University of London, and Tim Fisher (@familygroupmeet) social worker and expert on Family Group Conferencing and Restorative Practice, who offered me this guest blog which starts with public services asking for feedback they don’t really want, and explores how social workers and citizens can have meaningful conversations at a time when the ‘social contract’ between people and services can feel at breaking point. I met Tim when Shared Lives people were involved in one of Camden’s ground breaking seminars in which citizens, practitioners and leaders explore different ways of working together – a video link is in the text below to give you an idea of how unusual and inspirational Camden’s approach to coproduction is!

Rachel and Tim write:

It started with a discussion – or a mutual moan – about feedback in public services.  How it revolves around forms and data categories.  How it never tells anyone anything.  How tiresome it is to produce – for all involved.  And yet. . . on rare occasions, a conversation between a public servant and someone who uses a service manages to change things. What creates that opportunity for real clarity and change?

As with many problems in contemporary public services, the answer lies upstream.  Asking for feedback is a process intended to ’empower service users’ and ‘enable’ them to influence the way services are delivered in future.  Yet it does not in any way challenge pre-existing power relations, since it is a process directed and controlled by services themselves. So compliments tend to be gratefully accepted and pinned to the virtual or actual service noticeboard until they fall off, while any critical feedback is liable to be treated as ‘complaint’ and fended off with all the resources services have at their disposal. Either way, this feedback is rarely seen as a resource for transforming services.

The key to escaping the feedback bind, we think, is to conceive of the activity upon which feedback is being given is as a shared enterprise (or shared endeavour, in the words of the new Chief Social Workers for Adults).  If this happens from the outset, then, when the activity comes to an end, shared reflection is possible.  What do we mean by shared reflection?  We mean a relational dialogue in which each party takes as its starting point the questions:  who is this other person? And what are they teaching me?  In contemporary social work, there is a focus on ‘strengths-based working’.  What we are talking about might be thought of as a dynamic extension of the strengths-based perspective.  Not a fixed professional assessment of someone’s capacities but rather an alive appreciation of mutual learning, a belief that people can surprise, constructively challenge and teach us things.  A parent activist, Kevin Makwikila, with experience of the child protection system in Camden, often uses this quote from community theorist Peter Block in presentations to express what we are trying to articulate here:

“If you are working to make the world a better place, there are few experiences more rewarding and useful than having your thinking turned upside down. A shift in thinking is the essence of transformation. It is the basis of renewed faith.”

As things stand currently in UK social work, there are a number of barriers to conceiving of social work practice as shared enterprise.  In particular, there is a breakdown of the social contract, and there is the symbolic and actual distancing of social workers from citizens who might need their services.  Previously, citizens accepted (or felt obliged to accept) some measure of intrusion in family life (by schools, health services, social services) in return for the State’s commitment to protect and care for them or their dependents should they, for whatever reason, be unable to do so themselves.  But, as a consequence of the policy of austerity, this contract no longer holds (a point made and evidenced in compelling fashion in Featherstone et al’s 2018 book Protecting Children:  A Social Model)In adult social work, we can see people with no continence issues – entirely legally – offered incontinence pads instead of toileting assistance.  Restrictions upon people’s dignity or liberty are authorised because there is no better alternative available.  Meanwhile local authorities’ pleas for additional resources to enable them to fulfil their duties in law go unheard by central Government.

It is not only austerity which erodes the social contract, however, but also the distancing of social workers from citizens, which is both actual, and symbolic.  The ethicist Gert Schout writes of

“hyper-professionalism” – a “positioning of professionals as the exclusive or primary agents of change and their privileging of certain tools and interventions of their choosing, which erodes the social contract, increases stigma in communities about statutory social work and decreases community strength.”  

Similarly, the social entrepreneur and author Hilary Cottam talks about a system of protocols which has slowly accreted around care professionals: “there is a premium on being dispassionate, on keeping our distance.”  That distance manifests in a very real way in the gated and guarded office buildings where many social workers now work.  Gone are the locality offices tucked away within family centres and adult day services.  The new buildings are state-of-the-art, more efficient to run, better insulated – in every way.  But what price that insulation?

For us, the collapse of the social contract and the distancing of social work risks making practice which is ineffectual and, at worst, inflicting relational trauma on already traumatised families and adults.  If we are to achieve the sense of a shared endeavour upon which shared reflection is possible, we need to abandon the rigid separation of public and private spheres which currently blights social work and make space for reciprocity and mutuality.  We must redraw the lines within the everyday of our practice and our relationships  learning from people who have their own insights into using support, like James (speaking here).

This radical reshaping is already underway in a number of places. In Camden, its citizen-led Family Advisory Board is now in its 6th year. Camden Conversations  – a family-led child protection inquiry – born out of a partnership with academic Professor Anna Gupta and ‘Annie’ from Surviving Safeguarding – is a developing case study in the power of parents to change how social workers conceive of their practice. And Camden Adult Social Care, under the What Matters transformation, are developing a new Shared Lives offer, a big increase in Family Group Conferencing for adults and Full Circle community meetings where people help people to problem solve together.  Camden is recognising that we need to move to connect. There are thousands of crossroads where we work – places where we could pass each other by – or form new connections.

In Barking and Dagenham, the New Town Culture project – a partnership between the London Borough of Barking and Dagenham, the Serpentine, and Goldsmiths, University of London – is bringing artists into social care spaces, and social workers and social work service users into artistic spaces. Unaccompanied asylum-seeking children are finding their voice in encounters with Franz West at the Tate. Former Ford Dagenham employees and their social workers are meeting leading artists including a Turner Prize candidate to plan and undertake projects which allow mutual interests to emerge in exciting, surprising and sometimes messy ways. Because, as Alex Fox has pointed out and as the Shared Lives project demonstrates:

“For real change to take hold, you need to involve people who don’t always agree with each other and you need a tolerance for messiness: the neater the plan, the more fictional it is…ultimately, we may need to replace our existing power structures with decision making that feels more like those movements: collaborative, decentralised and human.”

We’re off to reflect on our shared enterprise.  Unsolicited feedback welcome!

Human rights abuses of people with learning disabilities

The Joint Committee on Human Rights (JCHR) published their report on the detention of young  people with learning disabilities and/or autism in mental health hospitals and so called Assessment and Treatment Units. The committee of parliamentarians ‘”condemns the “horrific reality” of conditions and treatment under which many young people with learning disabilities and autism are detained in mental health hospitals, “inflicting terrible suffering on those detained and causing anguish to their distraught families”.’

The government’s inspectors CQC come in for criticism for not consistently enough spotting human rights abuses where they are happening and the committee recommends more surprise inspections out of office hours and even covert surveillance. While CQC clearly made and continues to make mistakes, any public service which relies on covert and surprise inspections to keep people safe is fundamentally broken: the inspectors, even with more than their currently limited resources, will never catch every abuse, if the model is itself abusive. CQC itself says, ‘Services where people stay for months or years, where people are located away from their communities, where there is weak management and where staff do not have access to the right training and support, are more at risk of developing cultures where abuse and human rights breaches take place.’

Our thematic review on restraint, segregation and seclusion’s interim report came out in May 2019. The review has further emphasised the poor environment, high numbers of staff without support or training, and punitive cultures that can develop in these services.

The committee gets tantalising close to recognising this, recommending new legal duties on NHS Clinical Commission Groups and local authorities to ensure the right services are available in the community and making it harder to use the Mental Health Act to detain people with learning disabilities. The most important insight is the ‘the “grim”, predictable pathway to inappropriate detention in these potentially “brutal” circumstances’, from early family concerns around the behaviour of a son or daughter as they reach puberty. The family tries to advocate and fight for support. They remain the source of nearly all care, but are excluded from professionals’ meetings. ‘The child is taken away from their home and the familiarity and routine so essential to them, often many miles away and placed with strangers. Desperately concerned parents are treated as hostile and as a problem.’ This state-inflicted trauma leads to an emergency response, which gradually becomes open-ended ‘physical restraint and solitary confinement.’

Meanwhile, NHS England announced the extension of personal health budgets, already used by 70,000 to take control of their care package, to more people with mental health problems. As I’ve argued here before, personal health budgets, combined with significant investment in voluntary sector advocacy and planning organisations, and in not-for-profit community support organisations, offer a solution to the horrors contained in the JCHR report.

Everyone who has a learning disability, who is admitted into long-term NHS care, must be offered a personal health budget and an independent advocate to help them or their family to find and use community support to help them get out of hospital.

The rules which place decision-making power in the hands of a small group of clinicians must be changed, so that a designated decision-making circle of support, including the people who know the individual best, collectively share responsibility for protecting the individual’s human rights and maximising their life chances.

And every family whose support for their son or daughter is considered at risk of breaking down, must be offered a personal health budget of at least the equivalent value to the cost of the public service alternative, and support to spend it on support which can sustain family life, or provide a community-based alternative.

We could make these changes today.

Participatory democracy and people who use services need each other

My article on joining up the community development world’s work on participation, and the public service world’s work on coproduction, is published by the New Local Government Network here:

It starts:

Large swathes of our increasingly online lives are given over to ‘having our say’. We leave reviews on TripAdvisor or Amazon. We use social media to harangue businesses which let us down. We sign online petitions and share our views with friends and online acquaintances. And yet people who are hyper-informed and connected in the social and commercial space can feel disconnected from the decisions and decision makers which shape their public services and societies.

Perhaps this sense of detachment is one reason there is a growing global movement to involve people in the decisions which affect their lives and neighbourhoods. Approaches such as citizens’ assemblies and participatory budgeting, where a community is given control of how to spend the money allocated to their area, are not new, but they are resurgent.

Participatory democracy can be empowering, but that new power is not evenly distributed. Local forums can be captured by the most vocal groups; they can default to the lowest common denominator issues (everyone cares about the bins and pot holes, but only some people care about social care). Most perniciously, they can actively exclude the groups who are in most need of resources or who experience the most prejudice.

This is far removed from ‘co-production’ where people who use services are involved as equals from the outset after which they continue to be involved as equal partners in service delivery and future changes. True co-production has long been fought for by disabled people , with the support of bodies such as Think Local, Act Personal (TLAP). But for now, coproduction is also now much talked about, but far from standard practice.

So participatory democracy is not always inclusive of people who use public services, while coproduction can be limited in its focus to decision-making about those services. Is there a way to tackle both of these challenges together?

Read the whole article here.

The future of health and social care – conclusions from the Joint VCSE Review

I have come to the end of my role as independent chair of The Joint VCSE Review which took hundreds of views from voluntary, community and social enterprise (VCSE) organisations and developed actions, co-owned by government and sector, for how statutory and voluntary organisations should work together with citizens to redesign a more community-based health and care system, and then deliver that model. At national level, we helped design the Health and Wellbeing Alliance and the Health and Wellbeing Fund. NCVO provided the secretariat and a huge amount of support and expertise to the review, along with too many colleagues from the VCSE sector and from the Dept for Health and Social Care, NHS England and Public Health England to list here – I’m very grateful to them all.

My conclusions and recommendations for future joint policy work between government and the VCSE sector are here, and I am looking forward to discussing them with Simon Stevens of NHS England, Duncan Selbie of PHE, and Caroline Dinenage, the Minister of State for Care, shortly. NCVO have kindly published my blog on it here, which begins:

What does the health and social care system want from charities and social enterprises? The answers to this vary, and sometimes contradict each other. Voluntary, community and social enterprise (VCSE) organisations are asked to be more efficient and to merge into bigger organisations which can be contracted with, but they are also challenged to remain rooted in their communities and to tailor their work with specific communities. They should be collaborating not competing, while grant funding continues to be replaced with competitive contracting. The public expect charities to be independent, strong voices challenging the NHS and councils when they let people down. Those bodies generally welcome constructive criticism – up to a point.

When the world’s expectations of us become impossibly complex, the question we should ask becomes simple: what are we for?

Read the rest here.