Simon Duffy

Thoughts, Bemusements & Arguments

Tag: personalisation

Why Is It So Hard? It’s Time for Action

Last year I was lucky enough to attend a ceremony in London where Jean Vanier received the Templeton Prize. Vanier (the founder of L’Arche and many other great initiatives) said to the assembled audience:

“There is a revolution going on. We are beginning to realise that everyone, every human being is important. We are beginning to see that every human being is beautiful. At the heart of this revolution are not the powerful, the wealthy or intelligent. It is people with disabilities who are showing us what is important – love, community and the freedom to be ourselves.”

This is so true. Despite austerity, despite confused and damaging Government policies, despite a culture of consumerism and ongoing prejudice – people with learning disabilities and their families continue to show that they not only belong, but they can lead the way to a better, more civilised and respectful society.

John O’Brien and Beth Mount, in their brilliant book Pathfinders, describe how the leadership that only people and families can provide, is constantly undermined by systems that keep people poor, drain them of energy and limit their potential. Yet even still, the sun keeps breaking through, for instance, they cite research from Canada where families were asked about the impact of the child with a disability in their lives:

  • More than 70% said their family was stronger
  • Almost 90% said that a wonderful person had come into their lives
  • Almost 90% said they’d learned what was really important in life
  • Over 50% said that they now laugh more

My rather childish response on first reading this was to shout: “Suck on that Peter Singer!” [Peter Singer being the eugenic philosopher who wrote Should the Baby Live? The Problem of Handicapped Infants.]

But it can still seem so hard. It can still seem so unfair. There are so many odds stacked up against families. Money continues to pour into dreadful institutional services – demeaning and abusing people. The system continues to control people, to place barriers before them and burdens on their backs.

Why is it so hard? Why do so many of the systems that should be there to help people get in the way, often doing harm, rather than good?

One concept that many of my friends and colleagues use to describe this problem is Serviceland – they picture the strange systems and assumptions of professionals, managers, social workers as a peculiar world unto itself. A world divorced from community, a world where limited assumptions have become normal, a world where small problems become huge barriers to change.

But while I recognise the truth of this description I also worry that if we are not careful we can end up further burdening families by failing to challenge services and professionals to offer the right kind of support. It may not be normal, but it is still quite possible for professionals to:

  • Listen properly and offer good advice
  • Form meaningful and supportive relationships
  • Organise assistance which the person and family can direct
  • Reduce the burdens on people’s backs

In fact I know many people who are doing this and I know many people who welcome this kind of respectful and effective support. Service providers and professionals are not the enemy – even if they spend too much time listening to the system and too little to people and families.

The question is then how can we get better at offering good help and assistance?

The most important answer to this is to put the person and their family in the driving seat. Professionals can only lead the way in emergency situations and for very short periods – ultimately power must reside with the person.

New systems of control, like direct payments and personal budgets, have made a difference here. It is now possible for people to take control and organise the support they need. This is good – it is a valid option – but surely it cannot be the case that the only way people and families can get good support is to do everything themselves.

We know that some service providers are able to offer what I’m going to call Personalised Support:

  • They work with the person to help them get a good life that has true meaning
  • They listen to the person and put them in control, but don’t leave them without support
  • They help people pick and manage their own assistants, and don’t force them to be employers
  • They create systems that are tailored to the person and keep them safe
  • They respect and protect the person’s money, they know that they work for the person

I know that there are organisations and supporters working like this all over the world. I’ve met them in Scotland, England, Canada, the USA, Finland, Australia and New Zealand and I’m sure they are many more elsewhere. There are not enough, but these kinds of organisations do exist and we need to develop more of them.

It is for this reason that the Centre for Welfare Reform has decided to start actively supporting the kinds of change that will make a real difference to people and families. Not just for people with learning disabilities, but also for older people, children, people with physical and mental health problems and many more. It is time for us to start to learn from each other – to share best practice and to set our standards higher.

To begin this process we have launched an international survey to begin to map and measure good practice in Personalised Support around the world. This first survey is targeted at service providers – we want to find out who out there is trying to do this right and what they’ve achieved so far. We want to understand the problems people face – so we can begin to work together to move things forward.

If you are a service provider then please complete our survey.

[No longer active – survey is finished – report due soon]

If you know a good service provider or an organisation trying to change then please share the survey with them too.

We are already well into the 21st Century. We cannot keep waiting for change to begin. We must start acting according to our values and beliefs. If we say that people are full citizens, if we believe in inclusion and community, then we need to get organised and start to do the work.

The Marriage on the Mountain – Independent Living and Person-Centred Support

This is my fourth and final blog – written in honour of the Social Care Ideas Factory’s (SCIF) event – We Chose to Climb. This event has been one of the most interesting and positive events that I have ever had the honour of being involved in: great people, great talks and great conversations.

The event was, I think, an effort to bring together many threads of thought and action – and to bring together many different groups. I cannot do justice to the full wonderful human complexity of it all in this short blog; but I did get a feeling that, at last, we might be on the cusp of achieving two important marriages – marriages that have at times seemed so unlikely and yet marriages that would be so natural.

The first potential marriage is between the ideal of independent living and the ideal of person-centred support. These are not quite the same things, and they certainly have rather different histories; but there is, at their heart, such a commonality of purpose, that a marriage could be possible.

Independent living is a philosophy of being and action that has been developed by people with disabilities (for audiences outside the UK) or disabled people (for the UK audience).

[The hazards of forming this previous sentence give some indication of how difficult it is to write about any of these matters in a way that won’t upset someone, but I think it’s important that we remember that these ideas do exist in a global context – particularly as people with disabilities have worked very hard at ensuring that independent living is linked closely to the UN Convention on the Rights of Persons with Disabilities (UNCRPD).]

People with disabilities have been advocating for independent living for about 50 years – this is not an insignificant period of time.

There are some subtle differences of definition that can occur. Independent living is certainly very closely aligned to the idea of rights. As such it is an assertion that we have socio-economic rights (an idea that the current UK Government seems to have abandoned, but which is fundamental to the UN Charter on Human Rights). But it is also an assertion that these rights have to be sensitive to the many forms of discrimination or disadvantage that occur for people with disabilities. Perhaps most importantly, it is a challenge to the welfare system, that was developed in the era of Human Rights, after World War II, that these rights must be designed in ways which respect individual choices about lifestyle, relationships and identity.

Practically, independent living was the philosophy used, by many people with disabilities, to insist that they should not have to suffer institutional living, just because the welfare state had now absorbed institutional ‘care’ services.

The philosophy of independent living is also closely, sometimes perhaps too closely, identified with all sorts of positive service developments: personal assistance, accessible buildings and transport, direct payments or individual funding. These developments have all been very good, but one danger is that we confuse the philosophy of independent living with a particular mode of living – say, living in your own accessible flat, using direct payments and employing personal assistants. Independent living, in its true sense, means living as you wish, in the way that makes most sense to you, to your relationships, to your community and to your values – it is certainly not a prescribed lifestyle.

The concept of person-centred support is not the same as independent living; its roots are more diverse, and it is rarely treated as an explicit political goal in the same way as independent living has been. The term has taken root in counselling, in support for people with intellectual disabilities and in the world of dementia. As this suggests, it is an approach that seems helpful for people who might be disadvantaged because they have difficulty expressing themselves, making choices or find the right lifestyle for themselves. In practice, whether it is through planning, therapy, conversation or action, it is an effort to respect the identity of a person who might otherwise be ignored and erased from proper consideration.

Now I must be careful here – when I say that these two concepts might marry I do NOT mean that these concepts are the same or that they might be merged into one concept. Anyone who thinks that has not been married or has not paid attention to what a marriage is. A marriage is (or should) be a respectful union of two equals. Marriage involves, negotiation, love, mutual support and joint effort – for a common good. What I mean by marriage is that these two ideas might be used to complement one another and to develop a better understanding of common problems and shared solutions.

However, it is quite natural for many people with disabilities to be suspicious of person-centred support; for it may appear to be yet another ‘trick’ of the professional establishment to prod, poke and interfere with their lives. Accepting person-centred support might appear to be a false and unnecessary admission of weakness: Don’t give me person-centredness, give me control!

Yet the greatest danger of completely rejecting person-centred support is that it can narrow the world of disability considerably. Given natural human diversity and all the inevitable frailty of the human condition – all of us need assistance and those most like to face the barriers of disability are those who need assistance with communication or decision-making, those who are locked in anger, fear or sadness and those who suffering from illness or chronic health conditions. If our idea of disability is dominated only by the image of the wheelchair then the world of disability has been radically reduced.

At the heart of person-centred support is the bold assertion that everyone has value, everyone’s life is meaningful, everyone has something to contribute. This assertion is part philosophy – an ethical commitment to the equal value of all human beings – and part methodology – start by assuming value and you will find it.

So, my claim is, independent living needs person-centred support  because, without it, there is a grave danger that too many people with disabilities will be exiled to a place where they are deemed too disabled to be disabled. This is not right and it not helpful.

I also think that we must be careful not to rely too heavily upon our rights. Rights exist because duties exist – and human history tells us that, far too often, societies can quickly become blind to their duties and responsibilities. An awareness of right and duties does not flourish unless we are also aware of ourselves as interdependent beings, with innate value, and with multiple capacities to contribute – including the contribution to community that we make when we need assistance.

But person-centred support also needs independent living. There is a grave danger that person-centred support – which does just lack the same authentic roots as independent living – will morph into another professionalised approach, and will lose its way. We’ve certainly seen signs of this in England, where the institutionalisation of “person centred plans” as the new “care plans” promised so much, but has delivered so little. Person-centred support can open up new possibilities and offers the means to nurture mutual respect; but it is no replacement for robust rights, collective political action and practical peer support.

So, we can use both ideas, they are not the same, but they each offer something valuable and distinct.

There is a second marriage that would be useful, and that is the marriage of people and professionals. Again I do not mean to abandon the obvious differences that might exist between many millions of people on either side of that line (and the very many who stand with one foot on either side of that line). Self-identification as a person with a disability or in whatever group is useful, remains an essential first step toward claiming our rights. However, there are several reasons why a marriage between such diverse groups, might be advantageous.

First, there is the obvious political issue; for there is currently no assurance that there will be any professional services, of funding for personal assistance or for personal budgets. In England ‘adult social care’ has been cut by 30% in just four years – there is little point debating the niceties of the organisation of ‘adult social care’ or ‘personalisation’ when the whole edifice is crumbling around us.

Second, there is the call from many – both people and professionals – to drop many of the professional barriers, bureaucratic systems and undue regulations that make it more difficult for everyone to lead the best lives they can. These intrusive and ineffective controls have grown progressively over the years as trust between the front-line, management and politicians has declined.

The welfare state has become bureaucratic welfare. This situation will only be reversed when people with disabilities, families and professionals – together – start to insist upon and demonstrate the value of low-bureaucracy solutions.

Third, there is the fact that the capacity to collaborate collectively, across the professional boundary, will unleash some of the greatest innovations, support and community change. I see this in all of the best social innovations today – they are all the combination of a little money, a few employees, and a great release of creative action – rooted in community action.

The challenges of these marriages – of ideas and of people – are tremendous. They mean overcoming decades of mutual suspicion and misunderstanding. It means being able to think about problems from multiple perspectives. It means including others who might seem ‘too different’ to be included. But the risk of not achieving such a marriage is even greater.

Today, at the end of the conference, SCIF launched their next collaborative project – the Sherpas Union. This project will attempt to build an international movement of all those endeavouring to improve lives, for themselves, and for others. Perhaps it could be one means to promote the courtship between these different groups and these different ideas. It’s too early to predict, but I for one will try to do all I can to help out, and I have already applied to join.

Mountains, Pyramids and the Fate of Self-Directed Support

For me there is always something special about coming to Glasgow. Setting up Inclusion Glasgow in 1996 was certainly the most wonderful, exciting (if stressful) and ultimately rewarding experience of my working life. I still feel lucky – and a little proud – to have had the chance to do it, and I’m so thankful to those, like John Dalrymple, Julie Murray and Frances Brown, who helped make it possible.

This week I am here as a guest of the Social Care Ideas Factory – a great organisation – that seeks to build networks and innovations to promote social change. They are hosting a 3-day international conference on self-directed support, with the thought-provoking title – We Chose to Climb.

This is the first of four blogs that I committed myself to write in honour of their work and the work of all the participants at the conference.

The conference proposes the idea of climbing mountains as a stimulating metaphor for the task ahead – the twofold task: first, to help each one of us, individually, to make the most of our lives together, and second to develop new community-based approaches, to make self-directed support a reality. These are certainly mountains worth climbing.

And this image got me thinking. It reminded me of some my recent reading, it got me musing about my hopes for self-directed support in Scotland, but it also made me think about some of my fears, about what can happen to good ideas, when circumstances change.

Recently I have been reading about the ancient civilisations of the Fertile Crescent and Egypt, and of the birth of the Jewish faith. Mountains played a very important role in the experience of all these people. The mountain was a place where man could approach God, as Moses did at Horeb and at Sinai; and we find the same imagery in the Greek myths. Not only did the Greek gods live on top of Mount Olympus, Hesiod tells us that there was even a special god, Ether, who was present in the luminous fog, that hid the mountain tops. Mountains seem to symbolise both the presence, the greatness and the mystery of the divine.

In this light it is interesting that one of the most ancient structures was the Ziggurat – which seemed to serve as a kind of man-made alternative to the mountain. Not only does this bring the mountain down to size, it also tends to make access to God a matter of social and political organisation. Mountains are democratic – they will accept anyone prepared to climb them. Ziggurats, one suspects, were not open to all-comers.

Certainly the story of the Tower of Babel – Babylon – is the story of earthly hubris – man trying to reach God under his own power. It is also perhaps no accident that the downfall of the tower is the result of conflict and human diversity. The Egyptian pyramid took the ziggurat one step further. Instead of a platform by which the priest can meet God, the pyramid is a resting place for the dead Pharaoh-god. And the pyramid remains the classic symbol of political order, representing hierarchy and stability – it even adorns the US dollar bill.

The Jewish people of course rejected this deathly order. For them God could never be ‘brought down to earth’ in this way. For them the mountains of Sinai, Horeb and ultimately of Jerusalem itself, were symbols, not just of God’s transcendence, but also of our ultimate equality. We can all climb the mountain; no king, priest or leader can stand in our place.

Arguably, Jesus took this one step further. We are all lit by the divine light. Each of us can climb the mountain by ensuring that our light is held up high: “No one, when he has lit a lamp, puts it in a cellar or under a basket, but on a stand, that those who come in may see the light.” [Luke 11:33]

But what has all this symbolism and theology got to do with self-directed support in Scotland? Something I think.

The proper purpose of self-directed support – why we chose to climb – was to ensure that each person, even if they have an impairment, even if they need assistance – can lead a life of meaning and value. Self-directed support is an assertion of human equality and of our rich human potential.

Yet self-directed support is also an attempt to wrestle power from a deeply hierarchical and meritocratic system. Often the hierarchy seem to win. Here are a few examples of what I mean:

  1. Recently I have been doing some research into how idea that I first developed in Glasgow – Individual Service Funds – is being implemented in practice. Essentially an ISF is a simple innovation, it means that a service provider (and that term can be defined very broadly) acts as an intermediary for the person and helps them organise the support they need – flexibly and creatively. Yet, in practice, not only has take-up for this way of working been pitifully low (1% of all funding is spent in this way in England) it has also been bogged down in bureaucracy. For instance, many providers are contracted to work to a support plan that must be signed off by a social worker – the very opposite of the original concept.
  2. In addition, ideas like person-centred planning, which were originally brilliant innovations, that helped people to think creatively, have now been turned into mandated, mechanical processes – now everyone must now have their own person-centred plan. The original idea has been converted from a tool of personal liberation into yet another government controlled system. This does not stimulate creativity or empowerment; it merely enriches those who are in the business of planning, training or facilitating plans. A gift of great minds has been turned, by government, into something grubby.
  3. Standing further back, in England, self-directed support – or as it has now been renamed – personalisation, remains the official policy for ‘reforming’ adult social care. Yet, in the last four years adult social care has been cut by 30% with 500,000 fewer people now receiving care. So what does it mean to reform a system which is being cut like this? It is not encouraging.
  4. Lastly, we have seen personal health budgets (PHBs), proposed as a reform to transform the NHS. This seems such a promising idea. For example, anyone who has seen the poor state of mental health services, to pick just one area, must want to see self-directed support be extend into the NHS. Yet, with privatisation and means-testing growing, will the extension of PHBs not quickly lead to an acceleration in topping-up and other invidious practices? Soon the best piece of the UK’s welfare system – free and universal high quality healthcare – might be eroded into a quasi-insurance system where people are encouraged to take out additional insurance to guarantee faster access, better care or ‘for the good of all.’ This was certainly not the purpose of self-directed support.

This is how mountains are turned into pyramids. Ideas that were developed in the name of equality and of justice, can be uprooted and put to other uses. It seems so hard to fight City Hall.

Yet we should not despair.

While neoliberalism and austerity do appear to be winning, they are in truth, feeble foes. There is nothing inevitable about their success.

However, it will take new kinds of strategies to protect the mountain; and I think that events like tomorrow’s conference show us what is necessary if we are to climb mountains, rather than be crushed by pyramids.

  1. First of all, this event is about all of us – as equals – figuring out alternatives together. Our current problems exist because we’ve allowed power to become concentrated in the hands of too few. Together we have the wit and intelligence to challenge ourselves to take back that power. This means overcoming old barriers and distinctions – the divisions by which we are ruled – but we can do this.
  2. Second, self-directed support, even done imperfectly, still works. Its power and impact makes it very difficult for bureaucratic inertia to win the day. If we can continue to make practical progress, then, in a few years, it will seem outrageous that we allowed disabled people to sold and re-tendered like slaves; it will seem extraordinary that we did not support families and disabled people to be in control of their own support; and it will seem absurd that so much of the voluntary sector was tied down in red-tape, contracts and regulations.
  3. Finally, this event is in Scotland and Scotland has woken up to the fact that it is a democracy. It does not need to leave power where it is. Power can be reclaimed – in fact when the current elite so obviously lacks legitimacy in Scotland – taking back power is just a matter of time. I am sure a modern Scotland will begin to ask some very sharp questions about the kind of welfare state that is currently on offer and will start to move to something more in accordance with the principles of social justice.

Positive change is never inevitable; but the mountain will always overshadow the pyramid.

Control First, Plan Later

In one institution they painted a zebra crossing on the floor of the recreation hall – in order to help people safely cross the road. Can you imagine anything more dangerous?

We often do this. We teach a skill but in the wrong environment where it has no meaning and where the real life consequences of using or not using the skill don’t exist.

Many good ideas come adrift because we do not give them the right foundations. The cart goes before the horse.

I remember a conversation I had with a keen advocate of person-centred planning who was part of In Control. She seemed to think that people and families couldn’t plan or make sensible decisions without first receiving support and training in person-centred planning. This seemed upside down to me.

For me I couldn’t see the sense of giving people support to plan unless you’d first given them control over their lives. And once you’ve given someone control they may or may not need help to plan. It is extremely presumptuous to assume that disabled people or families can’t make their own life decisions without the well intentioned involvement of an enlightened professional.

I still feel:

Give people control first. If people still need a bit of extra help to plan then lets figure out the best way to make that happen afterwards.

Not only is it patronising to plan with people and assume they can’t make decisions for themselves – it’s also dangerous. When people are not in control, and are persuaded that they must first play the planning game just to get the chance to be in control, then we swiftly corrupt the planning process:

  1. Planning turns into pleading, negotiating, advocating – but that’s not planning. It lacks integrity and creativity – it is done as part of the ‘game’.
  2. Professionals leap in as consultants, trainers, planners, facilitators and brokers. Instead of supporting capacity we create new professional roles and tasks.
  3. Planning is used to control people further. Support plans are checked, altered, approved or not approved.

Its always useful to ask: would we want this for ourselves? When in life do we plan? When in life do we stick to the plan? When in life do we have to share our plans with others?

The only thing that makes planning safe is staying in control – knowing it’s your own plan and if you change your mind you can throw the plan in the bin.

Tools Don’t Work

Give a man a tool and he’ll go and build himself a tool-shed.

Collecting tools is far easier than finding out how to use them well.

Tools do no work – only human beings do the work. Tools, if well used, just make that work easier.

This simple truth is so easy to forget. Just as men go and buy power tools and gadgets that they will never use – and certainly will never master – so do governments buy into concepts and social innovations that (at best) are only useful tools. But when the state enforces the application of those tools then you can be assured that tool will rarely be used well, and certainly will never be mastered.

Varun tells a story of how he designed a wonderful solar oven to help poor villagers in India. But, when he came back to the villages, where these ovens were to be used, he found that people were simply using the ovens as cupboards. This was not from stupidity – cupboards was what they really needed.

Ultimately the value of a tool does not lie in its use but in the outcomes it achieves. It is only by looking at things from the perspective of our real needs and aspirations that the true value of a tool will be discovered.

Sadly, concepts like Personalisation, Individual Budgets, Self-Directed Support, Person-Centred Planning, and so many other attractive and often useful concepts, are all now tainted by the mindless enthusiasm of government. By making someone use a tool (especially a tool that you do not understand yourself) you guarantee that it will be either obsolete or put to an entirely different use.

Medical Power & Personal Health Budgets

The modern doctor evokes respect and awe, mixed with some fear and suspicion. At the most basic level a power relationship starts to exist as soon as we feel that another person holds in their hands an important key to our own life, death or happiness. We feel that we need them and this gives them power. However modern medicine reinforces this age-old pattern of dependency further because of the enormous progress made by modern medical science; progress which is underpinned by an interlocking system of research, education, accreditation, power and money. So, to put this another way, for thousands of years doctors have had power over patients; but since the development of modern medicine in this power has grown considerably – because modern medicine really works.

Ultimately Personal Health Budgets cannot be understood without thinking about this relationship, because it is an innovation within the doctor-patient relationship. It is not an innovation that effects everything in medicine directly; for there are many areas of modern medicine where the use of Personal Health Budgets would be entirely inappropriate. However it does create the possibility of a new kind of partnership between doctors and patients – at certain points – and as such this does start to change the whole relationship.

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