Simon Duffy

Thoughts, Bemusements & Arguments

Tag: person-centred

Customers or Citizens

I put up this little item on Facebook recently and it seemed to strike a chord with lots of people. So I thought I’d share it here.

The other day I received an email asking me to answer some questions about leadership in health and social care by a major service provider. I won’t say which organisation sent me this, as that would possibly be unfair and misrepresent their true intentions. However I did find their questions so peculiar,  and so unremittingly consumerist, that I felt moved to share the questions I was asked, along with my answers:

Dear John

I’m afraid my answers may not be as useful as you’d like, because I suspect I can’t quite see how to frame the challenge quite like that. But here are my answers to your 6 questions:

Q1: The overarching question we are seeking to address is: “How do we consistently lead and deliver high quality, high impact [services] for people that lives up to the brand?”

A1: If we are too concerned about ‘the brand’ then we should be worried about our underlying values. Moreover, largely brands in our sector are complex and contested. e.g. a brand like the ‘Mencap brand’ is not necessarily a ‘good brand’ to which we’d like people to live up.

Q2: How do effective leaders in health and social care ensure that their staff are customer focussed? (Thinking about all people issues, from recruitment, performance management etc..)

A2: Customer-focus in our sector is a deeply unhelpful way of conceptualising what we are doing and why we do it. People are citizens, not customers. People do not shop for human services and they certainly don’t shop for a life. We build a good life together.

Q3: How do effective leaders in health and social care identify what their customers want?

A3: We explore what we want to achieve in life through a process of internal and real world discovery. You are either on that journey with someone or you are not. There are few effective short-cuts and those there are can come at a high cost to your integrity (e.g. misusing person-centred planning).

Q4: How do effective leaders in health and social care measure their customer’s satisfaction?

QA: I suspect that measuring satisfaction is mostly done for effect. It can be useful as part of showing people the value of an innovation, but in normal circumstances it is fraudulent, as the underlying power relations distort the value of the data. True leaders listen and respond, but mostly they empower others to act. Ideally the last thing they want to do is appear as a ‘leader.’

Q5: How do effective leaders ensure consistent quality across an organisation which may span the country?

A5: Top-down control for quality in human services leads to bureaucracy, elitism and managerialism. Its impact is to rob power from the lives of disabled people and those working closely with them. An effective organisation ‘manages’ by liberating innovators, enabling good practice and dealing urgently with real problems when they arise – learning as transparently as possible as they go.

Q6: How would leadership in an organisation which delivers consistent high quality, high impact for people differ from one where this is not achieved?

A6: Such leaders would show humility, facilitate mature conversations and seek to explore how they can improve things further.

I hope that helps.

Best wishes

Simon John Duffy

I am not sure what else to say. However I think this divide, between seeing each other as citizens, or seeing each others as customers, is fundamental. The customer model obviously connects to many modern trends (positive and negative) but it seems such a fundamentally unhelpful way of thinking about disability and human services. The fact that something seems so obviously right to some, while it seems so obviously wrong to others, is indicative of the profoundly paradigmatic issues at stake. I suspect we won’t be able to just explain our way out of this problem. I think we will need to act as citizens in order to show others what citizenship means and what citizenship can do.

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.

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.

Citizenship and Higher Purpose

Citizenship is related three ideals of democracy that are at the core of person-centred work. First, all people are created equal, which means that everyone is equally entitled to reach for their higher purpose. Second, in order to reach for higher purpose there must be equal opportunities to do so. Third, our work as citizens is not simply to receive but to give back; not to reach for our own higher purpose, but to do so in a way that contributes to the greater good. Pursuing these ideals strengthens society and enriches culture for us all.

Beth Mount from Citizenship and Person-Centred Work

Beth Mount is the real inventor of person-centred planning, although her work has largely gone unrecognised in the UK – perhaps because in her hands it is too subtle for the kind of industrialised approach that was encouraged by the Valuing People White Paper.

What is important about what Beth is saying here is that notions such as person-centredness must also be tied to a broader concern with citizenship. This means making two changes to how we currently think about both ideas.

First, we must recognise that the notion of person-centredness only really makes sense – and it does make sense – if we begin to see human life as having real purpose where each individual has their own purpose, their own distinctive role to play. Human beings are not just animals, merely meeting their needs; human beings are individuals, each with their own distinct contribution to make.

Second, we must stop treating citizenship as if it is primarily a political concept – that we are citizens because we are a certain kind of member of a certain kind of society. Citizenship is something we create, we create though our own individual contribution. This means it has an important and foundational moral character – it offers a pattern for how we should be with each other. This means that all of us can be citizens, can strive for citizenship, even when we live in a deeply paternalistic, meritocratic or oppressive society.

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