Where human rights begin

One of my favourite quotes is Eleanor Roosevelt’s comment about where human rights begin: “in small places, close to home”. It would easy to hear the humility in that, and miss the ambition carried by that humility: our rights to be human, not as an abstract principle to be debated by philosophers or politicians, but to be lived, by all of us, all of the time. When we go home, all of us live in those small places.

Roosevelt’s quote reminds me why institutions are so incompatible with human rights: traditionally they are big places, however many homely touches we may add. Even though the buildings may be smaller these days, and have more ‘homely’ touches to alleviate them, services remain places where too many people are let into an individual’s life. Bureaucracies have the same effect: bringing public discussion and impersonal forms into people’s most intimate moments. Meg Lewis, who found a route out of the impersonal space of a mental health ward into the ordinary family home of her Shared Lives carer, talked about the thick file of ‘everything embarrassing I’ve ever done’ which followed her around the hospital, before life became what it should be: “going on adventures and making friends”.

A couple of weeks ago, we saw the corrosive effect that letting strangers into people’s intimate lives can have, as a team of workers at a large service dehumanised and assaulted people with learning disabilities, feeding off their distress for their own amusement. This BBC exposé was almost a carbon copy of one approaching a decade earlier, and of institutions exposed as havens of abuse through decades before that. Every big scandal and big reform programme, with their senior leaders, big budgets, committees and frantic timescales has failed to stop this kind of abuse happening. They have seen a big problem, and tried to impose a sweeping solution, whether it was a service restructure, or new commitment that lots of organisations signed up to, or new regulations. Those programmes have been too huge to pay attention to the small places, close to home.

Meanwhile, Shared Lives carers and their families, like the hundreds who attended Blackpool Shared Lives’s 30th anniversary celebration last week, have been quietly helping people to live good lives, in ordinary family homes, as part of a supportive household. There are 10,000 Shared Lives carers now; there have been many thousands more during our 40 plus year history. It is their willingness to share their homes and personal lives with another individual that has been the success of the model, as people have achieved small things like learning to cook chicken curry, joining a local club, or travelling on the bus independently for the first time. Those small things make a huge difference.

Our challenge during Shared Lives week, which this year has a human rights theme, is to make a big deal out of those small changes. To have huge ambitions for Shared Lives whilst making sure it is offered to thousands more people. To convince the big bureaucracies of local government and the NHS that this human-sized, infinitely variable model is part of the solution to the huge problems facing our crisis-ridden public services. Rachel, a Shared Lives Plus Ambassador who works as part of the team to speak about Shared Lives and to help us improve it, said at the Blackpool event that she is “lots of different things at once”: she is not just someone to be supported through a service. Even a brilliant service will fail her unless she has the right to be a football fan, a brilliant knitter, a charity ambassador, a cook.

We need now more than ever to believe in the value of getting the small things right. Getting the small things wrong always means we get the big things wrong and ultimately it will thwart every ambition we have as individuals and for our public services. We are often asked how we are going to scale up Shared Lives. Shared Lives week is a time when everyone can help us to do that through spreading the word, celebrating your local Shared Lives carers and, for the first time, signing up as a supporter. But just as important as scaling things up is our willingness to scale things down. To think about the small places, where human rights begin.

Feeling settled

The Children’s Commissioner reports today that : “We estimate that the majority of looked-after children – 74% – experienced some form of change during 2016-17: a placement move, a school move or change of worker. This is equivalent to 53,500 children.” (via BBC article here) Antony Corrigan, now an adult, said of his experience of moving around as a ‘looked after’ child: “You find it difficult to make a friendship group and you become alienated….I had at least 10 placements, including two children’s homes and in terms of social workers, I lost count, but I probably had about 10 in total. I just wish there was more consistency in the care I was given. It’s so easy to get lost in the system, no-one’s pushing you or encouraging you.”

We are cautious about making comparisons between foster care and Shared Lives, despite some obvious similarities in how they are organised, because Shared Lives is not about treating adults like children, and fostering is associated in people’s minds with family breakdown, whereas Shared Lives is something that adults choose when they are looking for the mix of independence and support which most of us look for when we form a family or a household as an adult, and it is very often about two families working together.

But I was struck by the contrast between that high level of instability in children’s lives, at a time when stability is so vital, and the tendency of Shared Lives arrangements to last for years. I recently met a young woman who had had around 30 foster or children’s home placements as a child, but who was thankfully settled in her Shared Lives household as a young adult. I’ve never come across someone using Shared Lives who has had more than a handful of Shared Lives arrangements over a period of years, and I meet many who have lived in the same household for decades.

There is often an emergency, unplanned aspect to fostering, which will be one factor at play, but that cannot explain children who have been moved multiple times. I wonder how much the strong focus on matching – both parties choosing to live together – plays in the relative stability of Shared Lives, and whether there is a debate to be had about matching within fostering, where there is a greater focus on professionalisation and avoiding attachments that might not be maintained. I’d be interested to hear from people much more knowledgeable about children’s support than I am on that.

Ironically, stability in the adult support sector is not always seen as a good thing. Whilst it is recognised that someone whose support arrangements are constantly breaking down is not happy (and that those crises are very difficult and expensive to manage), being ‘too’ settled is also sometimes frowned upon by service managers. I hear regularly that people who are happily settled in a Shared Lives household are constantly being considered for moving on to ‘greater independence’, even if living by themselves is not what they are looking for at that stage of life (how many of us dream of always living alone?) Sometimes that unwanted move uproots them from the support networks they have built up and they wind up in the revolving door of failed support arrangements.

In both children’s and adults’ services, there is constant churn and movement, whether it is children being moved multiple times during an already troubled childhood, or adults getting intimate personal care from a succession of strangers on a staff rota. Whereas in ‘ordinary’ life, most of us crave some kind of attachment, mutual dependency and feeling settled. As in so many things, services could learn a great deal from ordinary family life, if only we had the humility.

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

Panorama’s Castlebeck expose

I’m sure anyone who watched Panorama tonight would have been appalled at the systematic and violent abuse of adults within a Castlebeck facility supposedly offering care and rehabilitation for people with learning disabilities and complex needs. The Castlebeck ‘hospital’ (Winterbourne in Bristol) secretely filmed is a locked unit housing 24 adults in conditions in which there was nothing for them to do except wait for the next round of abuse from staff, which included assaults, cold fully clothed showers, water poured on people outside during Winter and constant threats and intimidation. Arrests have now been made. This ‘care’ cost the taxpayer around £3000 per patient per week. Inspectors, CQC, failed to intervene despite three allegations of abuse from a senior nurse and a recent conviction for a staff member caught abusing a patient. They have apologised and propose to carry out 150 unannounced hospital inspections. Ironically, Castlebeck boasts it is the winner of the HSJ/ Nursing Times Top 100 Healthcare Best Employers award 2010.

Deeply depressing. How many Winterbournes are out there amongst the remains of the UK’s long stay institutions? No form of care and support is immune from abuse, but the Castlebeck horror story illustrates the real risks in institutional care which is locked away from view and makes no attempt to value people as individuals or to help people aspire to ordinary, independent living. The perceived risks of support being led more by individuals themselves and of community-based support such as Shared Lives, should be balanced against the protection they offer from institutionalisation.

This shocking case also illustrates the need which is common across social care – for everyone to have an independent advocate to whom they can have access whenever they want and who will speak up for their rights come what may. Advocacy simply isn’t part of the current system and, at a time when care and support is supposedly being reformed to give people ever greater choice, the decreasing availability of support to make choices is a gaping wound in our sector.

Something that has left a really bad taste for me though, is not just the failures of the social care sector, but also the failures of the BBC team Continue reading