For readers outside the UK I must do some scene-setting. In 2011 the television documentary programme Panorama did an exposé on the crimes committed against people with learning disabilities at Winterbourne View, a private hospital in South Gloucestershire. This was the first time in a long while that people with learning disabilities had come the attention of the UK’s mainstream media.
In fact my own emotional response to the crimes at Winterbourne View may seem peculiar. I wasn’t shocked by the abuse scandal. I was glad that this long-running scandal had finally been revealed. Places like Winterbourne View have been around since the early 1990s and this kind of abuse is typical of what happens in those kinds of systems. In fact, when carrying out some research in South West England, I met several families whose children had been at Winterbourne View and they said that it was the ‘least bad place’ that their children had been forced to live.
I am sure that most professionals working in the system know that these things have been happening and have been happening for a long time. Certainly my own work has been inspired by a strong desire to get rid of such institutions and to ensure people are treated as citizens instead.
The physical and mental torture imposed on people at Winterbourne View isn’t even the worst of the crimes committed against people with learning disabilities. Far too many people die, either because of abuse, poor healthcare, over-medication or negligence. The fact that there are now some powerful advocacy groups putting pressure on the Government over these issues is one of the few bright spots in an otherwise bleak scene. The UK Government is getting away with cuts in support, cuts in housing, cuts in income and cuts in employment for people with learning disabilities. But at least it is not quite getting away with funding services where we know people are likely to be tortured and where they may even die.
The irony is that, of all the political problems faced by people with learning disabilities today, this is about the only one that has not caused been by our current extreme right-wing Government.*
These attacks on the lives of people with learning disabilities typify institutional service provision. Long-stay institutions, with their regimes of power and control, encourage criminal and immoral behaviour. Treat people as if they do not belong, treat people as if they are not worthy, are not fully human, then this will be the almost inevitable result. [Not quite inevitable, for nobody is ‘forced’ to act badly; but put people in the wrong environment and the temptations to act badly will grow quickly.]
I have written about this at length in my book The Unmaking of Man.
The first large scale institution to close in England was Darenth Park Hospital in 1988. The last to close, Orchard Hill, was closed in 2010. The Centre has published a number of reports describing these places and the experiences of people and staff.
In international terms England closed its institutions early. However there were many problems that we did not manage to resolve during this process and much of the early momentum towards inclusion ended once the hospitals were closed. Today’s scandals reflect important limits to this early progress:
- Limited public understanding – Hospital closures were inspired by family advocacy, but largely led by professionals (who were often inspired by Wolf Wolfensberger’s theory of ‘normalisation’). As the process of closure began it also became largely a professional matter – campaigning diminished and the public started to think of deinstitutionalisation as some kind of weird Thatcherite plot. Public understanding of, and commitment to, genuine inclusion has remained weak.
- Institutional community services – The typical model for post-institutional care has been group home plus day centre. Most people leaving institutions were simply forced into this new (milder) institutional environment. We made the classic mistake of thinking that the institution was the building and we failed to see that we were rebuilding institutions within our communities. Many organisations that had once campaigned and advocated for people’s rights became major service providers.
- New extreme institutions – Unsurprisingly some people from the old institutions could not ‘fit’ inside the new community institutions. So a profitable business developed as entrepreneurs (often ex-nurses) set up private care homes and hospitals to house those whom this early form deinstitutionalisation had failed. This process had begun by the early 1990s, and these business picked up new ‘clients’ whenever local community services failed to provide the right support. The NHS set also up what it called Assessment and Treatment Units (ATUs) to try and limit this problem, but often these services simply replicated the same problem.
- Crisis-driven eligibility – While many private and charitable businesses boomed during the period of ‘community care’ there was an on-going failure to address the fundamental issues of rights, power and control that shape the future. Families still face the same fundamentally unfair choice with which they were confronted during the institutional era: either ‘carry on taking care of your child by yourself’ or ‘hand over your child to us’. That is, we have continued to offer families responsibility, with minimal support or to have provided services over which families have had little control.
It is these combined factors that have led to the creation of places like Winterbourne View. When carrying out the research described in Returning Home and Getting There a clear pattern emerged to describe how people ended up in abusive environments costing an average of £175,000 per year:
- A family struggles with minimal support and then something happens which brings them to a point of crisis.
- At the point of crisis their son or daughter is offered a place in some kind of ‘community institution’ (usually a group home).
- The young person hates it; they feel a mixture of anger, sadness or fear and they start doing things to hurt themselves or hurt others.
- The young person is deemed to have ‘challenging behaviour’ and is then moved to a more ‘managed environment’ further away from home.
- The young person hates that too and so a cycle begins which leads to increasingly professionalised, expensive and institutional services.
So we end up where we are in England today. Not only do we have 3,500 people forced to live in private hospitals and ATUs, we also have about 8,000 people living ‘out of area’ and many thousands more in prison.
And none of this is necessary.
I know this is not necessary, not from theory, but from practical experience. In 1996 I set up a new type of service provider, Inclusion Glasgow. This organisation ended up working with some of the most challenging people leaving the institutions in Scotland. Together with my friends and colleagues we developed a very different kind of deinstitutionalisation process where we provided personalised support:
- Individual service design – Everybody is treated as a citizen with the right to a home of their own, living with people they choose and living a life that makes sense to them.
- Empowerment – Power and control is shared with the person and their family to make sure that decisions are made quickly, appropriately and as close to the person as possible.
- Personal assistance – People get support from the right person for them – recruited by them, employed for them – but with support and employment coming from the organisation.
- Individualised policies – Rules and ways of working are designed with and around the person to keep them and everyone else safe.
- Individual Service Fund – People have a personal budget which is protected and can be used to support flexible and creative service design.
Basically our approach was – treat everyone like a unique individual and support people to be full citizens with all the rights of citizenship. This is an approach that works. We went on to help establish two more organisations to carry out this work: Partners for Inclusion and C-Change for Inclusion. We also worked with a network of other smaller and inclusion-focused organisations in Scotland.
But while this process worked it did not really spread very far.
Personally my work from 2000 onwards focused on taking some of the lessons from Inclusion Glasgow into the development of systems of self-directed support. I wanted to help social workers work in the same way that we had – to empower citizens and families and to design support that was flexible and community-focused. First I took the model I’d developed to North Lanarkshire and then I took it to In Control in 2003.
Perhaps negligently, I trusted that the Inclusion Glasgow approach would flourish naturally in the new world of self-directed support. I was clearly wrong.
Reflecting on all of this now some things strike me as worth more attention.
Change requires not just better systems, but real leadership. There has been no significant ‘market’ pressure for real innovation by services. Organisations have been allowed to continue with old forms of practice because commissioners know no better and families have not been encouraged to demand better from service providers. Instead families have simply been encouraged to take over all responsibility – becoming employers, accountants, brokers and innovators – all for free.
The early successes of self-directed support all relied upon the willingness of some families to take this difficult path. It is testament to the power of love and family that so many have succeeded. But why should this be necessary? Why cannot services learn to work with families as true partners?
The other thing that strikes me is our peculiar image of leadership.
From 2001 we had a Learning Disability Czar. Does anyone else not think that this is the strangest choice of language? Why would we think this a useful image of leadership – to be the head of the failed Russian Empire? For me the idea of Czar suggests a range of problems:
- An enormous faith and power invested in one – democratically unaccountable – individual.
- The corrupting role of patronage – funding being directed wherever the Czar feels it should be best spent.
- A culture of submissiveness, solicitation and supplication that inevitably arises around any charmed central figure.
I cannot see why anyone would think this would help. Instead I think the creation of the Czar during the New Labour era helped to put us all to sleep. We learned that obedience and compliance would be rewarded with extra funding. We stopped seeking fundamental legal change, instead we expected wisdom to come down from Central Government. But what in our experience might lead people with learning disabilities and their allies to believe that Government is the font of all wisdom?
In a recent report emerging from the Winterbourne View crisis it is suggested that the answer to our problems might be to appoint a Learning Disability Commissioner. I don’t know about you but the word ‘Commissioner’ always reminds me of Commissioner Gordon in Batman. May be this is preferable to a Czar; but as we already have an enormous ‘care policeman’ in the form of CQC I don’t quite understand how another policeman will help us. Perhaps we do need Batman – but unfortunately I am not sure he is going to swing to our assistance. However a commissioner is certainly more in tune with the austerity era – no money, but perhaps some additional power to bully people.
As with all efforts to centralise power and control, the fundamental flaw in these dreams of Czars, Commissioners or any other such ‘magical leadership’ figures is the notion that transferring power and control away from people, families or communities and towards the new king-pin figure, will improve things. We naively assume that just by creating this king-pin role then it will inevitably be filled by the ideal figure of our dreams. But in reality these characters often make things worse.
In our efforts to improve things for real we must accept that there will be no Batman, no Commissioner and no Czar to solve our problems. Perhaps we need to take responsibility ourselves – in whatever role we find ourselves.
In particular service providers, social workers, advocates and charities need to think about how they can take responsibility for offering people and families much better support. Nothing stops us from offering people personalised support – the power to change things is in our hands. We know – at least many of us do – how to do this better. It’s time to get on with the job at hand.
For myself I’m thinking hard about how the lessons from Inclusion Glasgow and from other forms of personalised support could be shared more effectively in the future. I’m thinking about how families could be given a much better deal in future. I’m thinking about how we might develop the momentum to return to a focus on inclusion and citizenship – not failing services or institutional systems.
*I say ‘extreme’ not only because it’s true, but because our media seems to be branding the current Labour leader as an ‘extreme’ left winger. This seems very peculiar, as his policies seem rather moderate to me, so I use the term simply to try and balance out the impact of media slurs. I encourage any of you so minded to do likewise.