Simon Duffy

Thoughts, Bemusements & Arguments

Tag: support

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.

We’re Getting Older – Don’t Panic, Don’t Panic!!

Some days seem to have a curious symmetry to them, and this week I have had one of those days. It began in the heart of the Whitehall and it ended in a community radio station in East London; but the theme at the heart of the day was constant: what does it mean that we are now living longer?

The first discussion was a roundtable with some of the leading academics and experts in health and social care. (If you are wondering why I was there then you are not alone; I don’t know either, but I was certainly happy to have been invited.) It was chaired by the excellent Professor Martin Knapp of the London School of Economics and we were being asked to think about the implications of ageing on health and social care.

I was asked to say a few words about the impact of longer lives on our ability: “to provide and procure care” although, as I tried to argue, I think this is entirely the wrong way to frame the question. The real question is “how do we support each other as we live longer.”

What I tried to communicate was that there is no evidence that our growing health, and our longer lifespans, will create any crisis. These facts should be a source of celebration. Yet, there is almost no social change, even social progress, which cannot be turned into a crisis if it’s handled in the wrong way.

In my presentation I used data from a report by The Centre for Welfare Reform that we will be publishing in a few months. I had carried out an analysis of of disability, healthcare, social care and community capacity in Barnsley, where:

  • 2% of the population were in very bad health
  • 7% were in bad health
  • 13% had a disability (this group will overlap with the first two to some extent)

Barnsley spent £60 million on social care, however this figure is dwarfed by the care that the citizens of Barnsley provide to each other without pay.

If Barnsley had to pay for the support that is already being provided free, by carers (the official jargon for family and friends) then it would have to spend about £600 million. In other words the support provided by families is about 10 times greater than the support paid for by the community via taxation.

Furthermore, we can go on to estimate how much time and energy is potentially available to the town – what we could call its ‘community capacity’. You can do this by looking at how many people live in Barnsley (about 250,000) and then taking away all the time spent on being a child, time lost to paid work, time in education, time spent caring and time used for ordinary amounts of rest and leisure. This leaves you with an estimate for how much ‘community capacity’ is available. For Barnsley that is equivalent 65,000 whole time equivalent people, with an economic value of over £1 billion.

There is an army of community capacity potentially available to any community (unless its working too hard) and this capacity is probably over 20 times greater than what is spent on social care.

We are society with immense financial wealth, in addition we already have all the human capacity necessary to provide the care and support that we need to look after each other. We will all go through the shared human experiences of sickness, age, disability and death; but we certainly have the resources necessary to ensure that we can all do this in ways that ensure our dignity and mutual respect.

If we focused on our immense community capacity available then there would be no sense of crisis. However community capacity is undermined by a series of negative factors that are driven by Government policy and by the interests of the powerful:

  1. Cuts to social care – Local government funding from central Government has fallen by more than 30% in 6 years and is projected to fall further. Central Government funding used to provide 75% of local government finance. Cuts to social care have been deep and we have seen the number of people supported fall by well over 30% in the same period. I assume that local Government has had to cut its most efficient and low cost supports first, leaving it with a growing percentage of its budget invested in expensive and institutional provision, which is harder to cut. I do not see how the obligations of the Care Act 2014 can be balanced with the desperate situation of local government.
  2. Means-testing of social care – The extreme means-testing of social care does what all means-testing does – it reduces social solidarity and encourages people to divest themselves of their own wealth if they are at any risk of needing social care. This further undermines community capacity and faith in the community’s capacity to support people to get the necessary additional finances they need when illness or disability develops.
  3. Inequality and poor productivity – The UK is the most unequal country in Europe with low productivity and high employment rates. Or to put this another way, more people are having to work longer hours to maintain even a very modest income. For instance, increasingly both partners in a typical family need to work to maintain a modest income, leaving less time for caring or for citizen action. Economic inefficiency and extreme inequality both have the impact of minimising available time for citizen action and community capacity.
  4. Workfare and the collapse of the voluntary sector – There are two powerful but inane dogmas that dominate public policy in the UK: (1) the only useful activity you can do is earn a salary and so pay taxes and (2) the best people to find people work or volunteering opportunities are the DWP or their private-sector agents. Clearly these ridiculous assumptions undermine our ability to tap into people’s real gifts and skills.

So it seems we are in the process of turning what is an opportunity for a longer richer lives into a severe social crisis. We lock a higher proportion of our increasingly limited financial resources into professionalised and institutional care; so we will then be only able to offer support to fewer numbers of people who will be in severe crisis. Alongside institutional care, micro-institutionalisation and the misuse of technology to ‘keep people safe’ will probably grow. At the same time fewer families will feel that they can afford to take care of their own relatives and will so demand ‘care’ from a system that will not be able to offer them support until they reach breaking point. The ongoing pressure to allow euthanasia is consistent with this crazy system problem.

The sad thing is that, while there are so many clever and well intentioned people in the central and local government, it just seems impossible to shift discussion away from the minor problem of ‘funding social care’ to the major opportunity of ‘supporting community capacity.’ It is cynical to think that this is only because a crisis is much more useful to the political elites, but Mencken’s often quoted proposition does sometimes feel so true:

“The whole aim of practical politics is to keep the populace alarmed (and hence clamorous to be led to safety) by menacing it with an endless series of hobgoblins, all of them imaginary.”

Perhaps, but I hope this is not true, the powerful do not want to recognise that releasing community capacity is about freedom and empowerment. The real solutions we need – those generated by people, families and communities – all require freedom and creativity in order to exist. The great innovations we are seeing from organisations like PFG Doncaster, WomenCentre, IBK Initiatives, Best Buddies UK, and so many more, are all rooted in an awareness that we are free citizens who can choose to act to benefit ourselves and our community.

Capacity is rooted in the actions of free citizens, working together in community. Such capacity cannot be bought, it cannot be bossed, it can only be enabled, supported and liberated.

Despite my fears it was encouraging that so many in the discussion did share my sense of disquiet at the danger of accepting inequality and an on-going public service crisis as the inevitable background to policy-making. But one could still feel the gravitational pull in our discussion of these hobgoblin problems: the fear of increased costs, the fear of increased rationing and fear about what will happen to us at the end of our lives.

After this discussion I was lucky enough to be invited to East London Radio, to be interviewed by Mervyn Eastman. Mervyn Eastman is an inspiring leader and social worker who has established the Change Agents Coop with the wonderful Cheryl Barrott. The Centre for Welfare Reform has recently joined the Coop as an organisational member.

Together we discussed how the idea of citizenship must become central to our thinking about ageing. Citizenship, everyday citizenship, is the foundation for building a good life for ourselves and building good communities together. We explored how old age was not a problem; but a society that insists on treating it as a problem will certainly end up creating one.

What made this radio interview especially sweet was that I was able to indulge my love of music. A rather sad admission on my part is that I have always dreamed about what I would choose if I was ever invited on Desert Island Discs or on Radio 3’s Private Passions. For East London Radio I picked:

  • Communication Breakdown by Led Zeppelin
  • The Nightwatch by King Crimson
  • Anyway by The Roches
  • A Survivor from Warsaw by Arnold Schoenberg

As I left the studio, to head home to Sheffield, I found myself in the community cafe and bookshop that was also the home of the community radio station. On the shelves were some fantastic European novels I’d not heard of and so I indulged myself by buying 4 books to take home.

So my day ended with this sense of contrast. On the one hand, in the bowels of Whitehall, intelligent people were struggling, against the grain, to stop the system turning old age into a new social problem. Meanwhile, on the streets of East London, ordinary people were busy building, sharing and supporting one another to lead richer, better lives.

As ever Christ’s words help. The Vulgate puts it as “sufficit diei malitia sua” which could be loosely translated it as: Start by tackling today’s injustices.

If Government really wants to help us ensure that we can take good care of each other in the future then there are four pressing problems it could tackle now:

  1. Protect social care funding
  2. End social care means-testing
  3. Radically reduce income inequality
  4. End the stigma and control of the DWP’s benefit systems

Do those 4 things and human capacity will flourish and many of tomorrow’s problems will never arise.

The Prince and the Rooster

Once, in an ancient kingdom, there lived a fine and handsome and intelligent prince. But one day he got it into his head that he was a rooster. At first the king believed this was simply a passing thought, a phase his son was going through. But when the prince took off all his clothes and began flapping his arms and crowing like a rooster, the king knew he had a real problem. The prince took up residence under the dining-room table and would eat only kernels of corn dropped onto the royal carpet. The king was sad to see his son in such a state. He called in his best doctors, his miracle workers, his magicians. One by one they talked to the prince, tried medicine and magic. But he remained convinced that he was a rooster. One by one they filed out.

Each time, the rooster crowed. The king fell into a deep depression, convinced that no one could cure his son of his tragic malady. He told his servants to allow no more medicine men or fortune seekers into the palace. He had had enough. One day an unknown sage approached the palace and loudly knocked upon the palace gate. The king’s chief servant cracked open the wooden door and saw an old man with piercing eyes staring at him. “I understand the king’s son believes he is a rooster. Well, I am here to convince him otherwise.” The servant slammed the large wooden door. “So many have tried and failed. Go away, old man!” The next day, the servant heard once again a loud knock upon the gate. Again he cracked open the door. “I have a message for the king,” said the unknown sage. “What is it?” said the servant. “Give it and be gone.” “Tell the king these words exactly: ‘To pull a man out of the mud, sometimes a friend must set foot into that mud.’ The servant had no idea what it meant, but he left the sage waiting outside the gate and took the message to the king.

Slumped on his throne, the king listened to the cryptic message. “To pull a man out of the mud, a friend must set foot into that mud.” Hmm, what did he mean by that? But as he thought about it, the words began to make sense. He sat straight up and said, “Yes, bring him in. I will give him a chance!”

To everyone’s amazement, the wise man began by taking off all his clothes. The king shook his head. Now there were two naked men under the dining-room table, crowing like roosters. Soon the prince said to the wise man, “Who are you, and what are you doing here?” “Can’t you see?” said the sage. “I’m a rooster, just like you.” The prince was happy to have found a friend, and the palace resounded with flapping and crowing. But the next day, the wise man got out from under the table, straightened his back, and stretched. “What? What are you doing?” asked the prince. “Not to worry,” said the sage. “Just because you are a rooster doesn’t mean you have to live under a table.” The prince admired his friend, so he tried it. It was true. A rooster can stand and stretch, and still be a rooster. The next day, the sage actually put on a shirt and a pair of pants. “Have you lost your mind?” asked the prince. “I was a little chilly,” said the sage. “Besides, just because you are a rooster doesn’t mean that you can’t put on a man’s clothing. You still remain a rooster.”

Puzzled, the prince reluctantly tried on some clothes. The sage then asked for a meal to be served on the golden platters of the king. He sat down with the prince, and without realising it, the prince began to eat. The sage engaged him in a lively conversation about the affairs of the kingdom. Suddenly the prince jumped up from the table and cried, “Don’t you realise that we are roosters? How can we be sitting at this table eating and talking as if we were men?” “Aha!” cried the sage. “I will now tell you a great secret. You can dress like a man, eat like a man, and talk like a man, but still remain a rooster.” “Hmm,” said the prince. And from that day forward, he behaved just like a man. In a few years, he assumed the throne. He led his kingdom to great glory. But every once in a while, the thought occurred to him that he was, in fact, still a rooster-and when he was all alone he would crow a little bit, just to make sure.

Rabbi Nachman from Nina Jaffe & Steve Zeitlin (1993). While standing on one foot. Puzzle stories & wisdom tales from the Jewish tradition. NY: Henry Hot. 70-75. Prince Rooster

I first heard this story from that great promoter of Hasidic Wisdom, John O’Brien. This story also reminds me of the work of Womencentre in Halifax. What is magical about their work is the way in which each woman sees herself as working alongside the woman who is in need. And as an equal they can help, enable and challenge within a relationship based upon trust – focusing on the real issues facing the woman – not their labels or reputations.

The best support is always paradoxical in this way – it lifts people up as equals – not from above, not from below – but alongside.

© 2017 Simon Duffy

Theme by Anders NorenUp ↑