Simon Duffy

Thoughts, Bemusements & Arguments

Tag: institution

Living in the Ghetto

I was recently invited to speak to a room of commissioners for services for people with learning disabilities in England. This is a pretty rare event for me these days and so I was keen to make the most of the opportunity.

I called my talk ‘Who Put Out the Fire?’ and I wanted to talk about why there no longer seems to be any significant passion or momentum for inclusion or for further deinstitutionalisation. I do not mean that nobody is doing good work. As ever, there are brilliant people doing wonderful things across our communities. But overall the passion that used to exist to bring about positive change has evaporated. In fact, in some places, we see things going into reverse.

We are at a moment of change.

Progress is not inevitable and we should not be naÏve. Things are beginning to roll backwards and, unless we change our behaviour, things will get much worse. Eugenics is already back on the agenda, in the form of genetic screening for Down Syndrome, ongoing practice in neonatal care and abortion laws that abandon limits in the case of disability. These practices go hand-in-hand with the meritocratic beliefs of our elites – people who think that the ‘clever’ (themselves, by their own definition) deserve the ‘best’. Putting powerful technology in the hands of people who think that they are better than other people never ends well.

And the institution is back. Not only are thousands still incarcerated in private hospitals (at great expense) but also authorities are now being tempted by that old dreadful excuse for bad practice: economies of scale.

Some of this can be explained by austerity. Politicians and managers have always been tempted by the idea that ‘congregate care’ must be cheaper and that they have a public duty to manage costs and be ‘reasonable’. This is understandable when local authority funding has already been cut by 30-40% and is being further cut today. Local commissioners are only following the lead of national politicians when they shift the burden of the banking failure onto disabled people and families.

However, more controversially, I think that some of the responsibility for today’s failure of leadership lies with Valuing People. I do not mean that the Valuing People policy or its leaders were bad – quite the opposite – but I do think the whole process has led us up a creek and today everybody seems to have forgotten how to paddle. Genuine, community-based leadership, is missing in action.

In the 1960s and 1970s many leaders emerged, inspired by Wolf Wolfensberger’s ideas, shocked at the state of our institutions or simply keen to ensure their sons and daughters were able to get a better deal. These leaders challenged the norm and created new alternatives. Many of the organisations (like Mencap) which we take for granted today earned their leadership status through this process of challenge and creation. Later on other organisations, like the Campaign for Mental Handicap (which became Values Into Action) took on the role of challenging Government and of advocating for human rights and inclusion.

But Valuing People encouraged people to put their faith in two dangerous myths. First, that Government did care, and would continue to care, about the fate of people with learning difficulties. It didn’t, it doesn’t and it won’t. Second, positive change comes from Government and from the leaders it selects.

By this I don’t mean that Government is bad or hostile to the interests of people with learning difficulties. It isn’t. But Government is always late to the party. The job of a civil servant is to keep everybody happy, not to lead radical change. The job of a politician is to respond to democratic pressure, not to stand up for powerless minorities. Entrusting leadership to politicians and civil servants is to abandon leadership.

It seems to me that Valuing People killed the real drive to inclusion; just as Putting People First killed the drive to self-directed support. Killed with kindness, killed with money, killed by assuming an intellectual authority it could never possibly live up to.

This seems counter-intuitive. Too many good things, too much useful funding and too many opportunities are associated with Valuing People to believe that it was bad for us.

But look at England today.

Where is the self-advocacy movement? In tatters. Today the Government is about to take away the last piece of funding for the National Forum and for the National Valuing Families Forum. If this goes then can we look back on over 30 years of self-advocacy development and congratulate ourselves on our achievements? No. Self-advocacy is patchy, under-funded and lacks any agreed form of leadership.

What about service development and innovation? For some reason we now expect government and commissioners to lead innovation; but our systems of commissioning have effectively killed off innovation and creativity. Some people and families have escaped the system, using direct payments; but most of the money remains invested in the care home system (which is now protected from the impact of personal budgets).

Today the whole sector seems incapable of defending itself or of uniting with others to fight for justice. For example, there is no effective campaign to defend social care. Many of the leading organisations seem too dependent on Government funding and unwilling to speak out or get organised.

If you look upwards for rationality and for inspired leadership you’ll be a long time waiting.
The positive changes that began in the 1970s were led by people and professionals, starting from where they were then. Focused on what they could do with the resources they had to hand. They did not expect everything to be done for them. They got organising, supporting and campaigning. That’s how things really change.

Perhaps one thing that they also had back then was a strong sense that the current system was unacceptable. They looked at the institution – those systems of absolute exclusion – and they declared that it was absolutely wrong – and they then worked hard to build an alternative.

In practice that alternative is the world er have now: group homes, day centres, respite services and care services. This is a significant improvement over the old system. This is the system that is today’s ‘normal’. This is the system we are struggling to improve and which is now beginning to slip backwards into something worse.

Why can’t we do better than this?

What can’t we dream bigger than this?

People with learning difficulties are agents of social change. They can bring communities together, they can break down the barriers of pride and illusion that leave us dislocated and alone. They can offer the rest of us a different sense of the purpose of life and insight into the joy of living.

People with learning difficulties are just different. But we are all different… get over it.

Diversity is a good thing and to be welcomed. True equality is not found in sameness, conformity or compliance. Equality means treating each person as if they belong, as if their gifts have meaning and value. Equality demands we treat each other as citizens – working together to create communities that welcome and nurture our gifts.

If you believe this then this belief has real life consequences.

One of these consequences is that we must start to acknowledge that the community care system, that was developed during the period of deinstitutionalisation, is totally inadequate. It is a system of ghettos, small segregated communities, cut off from community life and communicating to people on both sides of its walls that people with learning difficulties don’t really belong in our communities.

Ghettos are not evil. Community care ghettos are not the same as the long-stay institutions that they replaced. Ghettos can even be fun and interesting. Ghettos can even convert themselves into places of community and inclusion. (It would be a mistake to confuse ghettos with institutions and it would be a mistake to ‘close’ ghettos using the same kind of process that were used to close the institutions.)

The architects of new and inclusive communities will be people themselves. But they will need help from families; and they will need help from the professionals who want to be true partners. And they will need help from fellow citizens who want to live in the kind of community that can welcome each of its members.

Is this progress inevitable?

No. Today it’s being undermined by powerful social, economic and political forces that are being left unchallenged.

Is this progress a pipe dream?

No. It is happening now, in small pockets. There are people and places that are showing us the way forward. Rising to this challenge takes work, it takes time and it takes creativity. But it’s worth it.

What I am trying to do is reframe the challenge that lies before us. We must stop treating the current community care system as if it provides an acceptable norm. It does not. We have to be honest about the limitations of what we’ve achieved. There will be no increased hope, passion and wider social movement unless there is both a compelling vision for inclusion and a growing sense that the ghettos we’ve created are unacceptable.

Czars, Commissioners or Just Us?

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:

  1. A family struggles with minimal support and then something happens which brings them to a point of crisis.
  2. At the point of crisis their son or daughter is offered a place in some kind of ‘community institution’ (usually a group home).
  3. 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.
  4. The young person is deemed to have ‘challenging behaviour’ and is then moved to a more ‘managed environment’ further away from home.
  5. 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.

The Inquisition – A Truly Modern Institution

The Inquisition was its own dominion of judgement, a state within a state, answerable to no one other than the Pope, the Crown and its own array of imposing bureaucratic regulations. As well as the inquisitors and those who staffed the tribunals of interrogation, a huge array of ‘familiars’, who were responsible for handling the bureaucratic work that oiled the machinery of terror. So many carefully considered regulations surrounded the application of torture, for example, that those who oversaw it constituted the first systematically organised bureaucracy of pain. The Inquisition even had its own miniature armies of protection and intimidation. The Inquisitor General Tomas de Torquemada never travelled anywhere without his own army of horsemen, especially after an inquisitor had been murdered in Saragossa Cathedral by a desperate group of ‘conversos’. Notoriously, virtually unlimited powers of torture were granted to extract ‘full’ confessions from those suspected of relapsing or, worse, those who were impenitent, active Judaisers. Thus the snooping state made its way into history: servants, family members, neighbours frightened and cajoled into becoming informers and spies. Even in monasteries and convents, monks and nuns would report on brothers and sisters whom they suspected of looking down when the Host was raised, stumbling over the Paternoster or Ave Maria and saying who knew what in the solitude of their cells. Yirimiyahu Yovel is right to see in this the germ of a modern malevolent modern institution rather than a medieval relic. It was indeed something fresh in its inhumanity.

Simon Schama, The Story of the Jews, p. 405

Support for Yovel and Schama is found in Arendt’s The Origins of Totalitarianism and in Foucault’s account of the prison. The Inquisition may have been one of the first modern institutions, but the hospital, the prison, the asylum, concentration camps and extermination centres were to quickly follow. The religious and the anti-religious joined together in a barbaric assault on humanity.

Modern doesn’t mean better.

And as Arendt and Foucault noticed, the sign of a truly modern institution is that it refuses to accept merely outward signs of conformity. It is not good enough that we seem to be fitting in – we must really fit in – and if not we must be remade or destroyed.

What is the connection between this modern desire to invade the inner private sphere of the mind and spirit and the growing conviction that no such sphere exists? It is almost as if the declining faith in metaphysics (not just Christian, but any deeper metaphysics) leaves us exposed to the most extreme outrages by those who seek control.

Materialism leaves us naked, ready to be herded hither and thither.

Perhaps the Inquisition was the first sign of our declining faith – no longer do we trust in the Holy Spirit and the judgement of Christ – we presume to act on their behalf.

The Two Meanings of Institution

The word institution has at least two very different meanings.

It can mean something good.

It is something that we have established and which we may respect and value – a constitution, an organisation or even a habit – like forms of politeness. While such institutions may vary in their social purpose and moral impact they are essentially good. They are the means by which we connect, act together and sustain meaning within and between generations.

As Charles Williams puts it, “An Institution is the nurse of souls.”

Without institutions (in this positive sense) our community would be a desert. We would have to make everything anew and we would have no traditions or systems for handing on knowledge, experience and wisdom.

But there is a second kind of institution, whose essence is bad.
For the word is also used to describe the buildings or camps that were set up – often deep in the countryside – where many thousands of disabled people or people with mental health problems were incarcerated. These institutions were very bad (although they were often established with good intentions). They were places where abuse was often rife and where people struggled to find lives of meaning or respect.

As these large institutions closed and people moved back in to ‘community’ there were many improvements – but often the institution remained. The institution seemed to follow people back into the community. People found that they were still not free, still could not connect, still could not contribute.

It turns out institutions can be large, but they can also be very small. Institutions can be far away, but they can also be next door. Institutions can be very obvious, but they can also be hidden. Community care – as it was called – was successful to the degree that it supported people to be citizens, to really participate in community. Sadly, for many, de-instutionalisation has only only meant closing down a crumbling hospital on the edge of town and transporting people into special units and day centres.

The essential difference between the first and the second institution is that the second kind of institution is a system of control. The buildings, rules and systems corrode human freedom, spontaneity and love. They dictate to us who we must be. [This is true both for the controllers as well as the controlled – often the guards, wardens or nurses are also damaged by this toxic environment.]
These institutions prepackage destiny. They are systems, habits or mentalities that determine how we should live and they exert their malign influence in many different ways.
Death is the only true certainty (it seems that even taxes can be avoided by some). But the institution brings death-like certainty to human life by killing our capacities for newness, creation and purpose.

Internal Institutions

The individual and groupings of people, have to learn that they cannot reform society in reality, nor deal with others as reasonable people, unless the individual has learned to locate and allow for the various patterns of coercive institutions, formal and also informal, which rule him. No matter what his reason says, he will always relapse into obedience to the coercive agency while its pattern is within him.

Idries Shah from The Caravan of Dreams

Idries Shah is an interesting Islamic scholar whose book I found in a second-hand book store recently. This passage stood out for me partly because of his interesting and unusual use of the word institution.

I tend to use the term ‘institution’ in one of two senses. I talk about institutions in a wholly negative sense when I refer to those campuses, asylums and hospitals that began as efforts to segregate the poor and needy and then accelerated during the period of eugenic panic when the objective was to remove people from humanity by effective sterilisation or murder.

However the word institution also has a second, much more positive sense, meaning any kind of human or social creation that has been established and which has stood the test of time. For example, the monarchy is an institution; Bolton Wanderers is an institution.

So what does Idries Shah mean by the patterns of coercive institutions which we find within us? What relevance has this to the challenge of reforming society?

One pattern, that we find in many revolutionaries, is the double-edged belief that power is all about unjust rulership. The revolutionary identifies the ruler as unjust, and may manage to overthrow that ruler; but they then end up living out exactly the same pattern of injustice. Is it that the revolutionary secretly knows no other way to rule than by cruelty and injustice? The dominant pattern which inspired his revolt ends up ruling him and dictating his actions.

Do we see an institutional pattern in those who seek to reform systems of welfare. They may believe the system is unjust, patronising and disempowering. So they seek to shift power – reorganising funding, organising new supports, reforming structures. But all the time their actions seem to suggest that people themselves are not really capable of solving any problems for themselves. We have to do it all for them; they are not good enough or strong enough. The battle to defeat paternalism can quickly become very patronising.

Idries Shah is not suggesting reform is impossible, nor that these patterns can be eradicated. Rather it seems to me that he is suggesting that these are temptations that we need to watch for and overcome. Revolutionaries must ask themselves how they will avoid replacing the tyrant with greater tyranny. Welfare reformers must ask themselves how they will avoid replacing one type of control with another.

The Difference Between Prison and Institutions

Yes, because in prison at least you know where you stand. You have a sentence – till the whistle blows. Of course, they can always tack on another sentence, but they don’t have to, and in principle you know that sooner or later they’re going to let you out, right? Whereas in a mental institution you’re totally dependent on the will of the doctors…

Joseph Brodsky in conversation with Solomon Volkov

In the UK we remain totally complacent about the basic abuse of people’s human rights by the excessive use of institutions and hospitals. We seem immune to the fact that there is no evidence that these institutions work and only too much evidence that they fail: encouraging abuse, suicide, depression and increasing problems for their inmates.

I recently came across an honest assessment of the true problem from R D Laing:

It is not easy. What do we do when we don’t know what to do? I want that guy out of sight, out sound, out of mind… The situation keeps cropping up in our society, when no matter how liked, esteemed or loved, some people become insufferable to others. No one they know wants to live with them. They are not breaking the law, but they arouse in those around them such urgent feelings of pity, worry, fear, disgust, anger, exasperation, concern, that something has to be done. A social worker or psychiatrist is ‘brought in’.

This is honest, but also frightening. Is this really the best we can do?

My own experience is that there is much we can do to avoid the path to institutionalisation and much we can do to help people escape institutions. But the forces that keep these institutional arrangements in place are immense. A recent study showed that ‘out of area institutional placements’ were costing the NHS £175,000 per head. This is money that is being invested in abuse and wasted lives.

It is not the economics of rational commissioning that keep institutions going – it is the fear and anxiety that Laing describes. Professionals, families, sometimes even the individual themselves, all lose faith in the possibility of any sensible solution. The existing community care support offerings are woefully inadequate and for many people they quickly breakdown:

  • Day centres that lead nowhere and which are often boring and fruitless
  • Care homes that force people to live in groups they don’t choose
  • Domiciliary care that works to its own rules and its own time tables

In other words we force people to fit into systems that work to their own institutional logic, and then we blame the person for failing to fit in. When these ‘community care’ solutions fail we then send the person even further away to an institution that will fail even more dramatically – at greater expense – but at a ‘safer’ distance. The very fact that we spend so much money is perhaps partly a salve to the conscience: look we care – see how money we are prepared to spend!

Brodsky (who was forced to live in both prison and the institution for refusing to accept the justice of the USSR) rightly observes that with the institution there is no time limit to this madness – in the institution imprisonment can be endless.

The question then arises: Why could we not start by actually working with the individual, their family and their community, to provide what really does work? Instead of abandoning them we could work with them to find solutions that strengthen them and those that care about them.

Those of us who have worked in this way know that it works. What will it take to encourage the system to defend human rights and develop personalised support?

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