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.

Horror

After last night’s BBC Panorama expose I looked back at what I wrote here eight years ago, after Panorama secretly filmed abuse in Winterbourne view.  I could cut and paste much of it into a response to this latest misery: so little has changed. I could also of course look further back – to the Mansell reports, to Goffman, and furthe into the history of asylums and how places of supposed safety become places of horror. Once again we have universal revulsion, leaders committing to action and promises that things will change. It was the gap between what everyone in our sector had agreed was necessary and what collectively we seemed able to change which led me into thinking and writing about the visible and invisible asylums which we still build, maintain and whose existence still seems to shock us, though they hide in plain sight.

The reality is that the public eye will move on and the 2000 people living in places like Whorlton Hall will find themselves back in the shadows, whilst non-disabled people in high-paying jobs return to talking about the challenges of commissioning, shared commitments to quality and the importance of building senior relationships, as if this week had highlighted some minor technical challenges, instead of abuse, ‘learning disability’ given as a reason not to resuscitate people, solitary confinement and unexplained deaths.

No. None of us are doing nearly enough, including the charity sector: a glance at social media makes plain the gap between the measured responses of charities and the raw anger and grief of families who have lost loved ones, or switched off their TVs fearful for a son or daughter locked up miles away. Outside of Twitter and one or two organisations like Learning Disability England, the voices of people with learning disabilities themselves were absent: not called upon to speak as experts in the programme, nor the news items that followed it. It is no coincidence that people with learning disabilities are so frequently abused, and that they are, as Philippa Bragman of CHANGE once pointed out to me, the only group of people routinely excluded from what should be their own civil rights movement.

After Winterbourne I worried that if there was a mass closure programme, nothing adequate would be put in place of the so called Assessment and Treatment Units, where there is often little visible assessment or treatment. I thought that NHS commissioners might at last turn to models like Shared Lives with less timidity: when things are this bad, surely it’s time to try something new? Whilst Shared Lives grew for many groups, for this group of people with learning disabilities held most deeply within the medical system, it didn’t happen. And here we are again. (Of course – this is just the latest incident to be exposed. How much abuse has taken place in the last eight years with no hidden cameras there to witness it?) The ease with which the system reverts from this public crisis back to uneasy stasis is terrifying.

I’m convinced we need a closure programme: nothing else will create the urgency to start new community services. Our statement with Voluntary Organisations Disability Group and Learning Disability England set out three things that would take power and money away from the class of leaders who have consistently failed to use it well and put it in the hands of people and families. Those local and national leaders must:

  • Make themselves accountable to people with learning disabilities, autism and mental ill health, and their families, by creating formal relationships with local user-led and carers organisations and advocacy services.
  • Ensure everyone using long-term NHS care can access a personal health budget and an independent advocate to help them find and use new forms of community support to help them get out of hospital.
  • Work with high quality voluntary and community sector providers to redesign care around the person with a clear expectation that everyone can live a good life in the community.

We know that no single model has all the solutions and heaven knows the charity sector is far from perfect. Though Shared Lives is consistently rated as the safest and best form of regulated care, there have been incidents of abuse in its long history. But if, as organisations providing care for public benefit not for profit, we don’t believe that we can do better, what are we for? It is criminal that the NHS remains content to buy ‘care’ for thousands of pounds a week from organisations which clearly have no business in people’s lives, whilst its ‘too busy’ to work with us and other community services who have shown we can offer infinitely more human care. It is not even as if there is a financial challenge: the reason there are so many private sector organisations in this most complex and important part of the health service is because they are charging exorbitant fees. I read that the owners of this latest failure made £40m last year: their investors will not forfeit a penny of it for the misery they caused. What else could that money have been spent on?

As with Winterbourne View, it was the abuse which was shocking but what we should be focusing on is the model of care we saw which fostered that abuse. Any commissioner paying thousands to that organisation , who had spent five minutes in that place, talking to those staff, should have been able to spot that they were in a place which couldn’t possibly offer a good enough life to people: an institution, where people were forced together behind locked doors, shut away from friends, family, life, staffed by people with the most basic understanding of humanity. In a service which will have claimed to be specialist, expert, necessarily eye-wateringly expensive. The majority of staff working in medical care are good people, but we would not accept this rate of failure, nor such limited ambitions for happiness, for any other group of people. Those good staff will be good staff in less institutionalised services, and would find those roles infinitely more fulfilling.

If we want change to happen this time, we need to put power in the hands of the people who are genuinely calling for it: people with learning disabilities and their families. I don’t trust anyone else.

No more Winterbourne Views

I’ve just returned from Butlins in Bognor Regis (who says working in the charity sector isn’t glamorous?) where, with lots of help from volunteers from local and not-so-local Shared Lives schemes, a group of Shared Lives carers and people who use Shared Lives are taking a week’s break. We usually do this in Blackpool, and recently our colleagues at Aberdeenshire Shared Lives have organised weekends in Aviemore, but we thought it was time we came down South for a change.

Even Bognor, the UK’s sunniest place, hasn’t escaped the rain this week, but no one is going to let that stop them having fun. We were also doing some work. Colleagues have been hearing from people who use Shared Lives about how it has transformed lives which in some cases have been led in residential care or other institutions. Shared Lives carers are a dedicated bunch, and twenty of them crammed into our chalet for a session on personalisation and personal budgets yesterday, when they could have been enjoying some brief moments of sunshine. We discussed how Shared Lives can help people have more control and choices in their lives and I heard from some Shared Lives carers who were combining Shared Lives support with micro-enteprise approaches. In one instance, the carer offers Shared Lives in her family home and then, for people who want to move into a more independent setting, supported lodgings close by, so that she can be the consistent source of support as someone moves towards their own place.

Perhaps it was because I’d had the (too rare!) opportunity to spend time with people at the front line, and to see people with learning disabilities having fun and joining in with all the holiday activities that others were enjoying, that I felt particularly strongly when I noticed the current Mencap / Challenging Behaviour Foundation campaign to close down the remaining long stay ‘hospitals’ for people with learning disabilities and ‘challenging behaviour’.

There is no reason for these places to exist. However well run they are, large institutions will never be the best way for people to move back towards ordinary family and community life. The campaign is based on you emailing your MP, to ask her or him: Please write to the Health Secretary Andrew Lansley MP, expressing concern about the continuing existence of long stay institutions and ‘hospitals’ for people with learning disabilities and recommending that they are replaced with community-based alternatives (such as small homes, supported living arrangements and Shared Lives) as soon as possible. Emailing your MP takes seconds, thanks to Writetothem.com.

What was suprising about the Winterbourne View scandal was not, sadly, that abuse took place. When people are placed out of sight and mind, in institutions designed to contain and control them, there will always be instances of abuse. What was suprising was that such places continue to swallow up vast sums of public money, when cheaper, better alternatives like Shared Lives are well established and widely available.