Simon Duffy

Thoughts, Bemusements & Arguments

Tag: social care

Welfare and the Common Good

My friend Virginia Moffatt recently edited a collection of essays called Reclaiming the Common Good which explores the way that society, in so many ways, seems to have lost its way. My essay explores some of the original thinking behind the welfare state and what we might do to return to the ideas that originally inspired it. The book launch was in Bloomsbury on 20th September 2017. Virginia asked several of the authors some questions, and here are my answers.

How would you define ‘welfare’? Why is it that we are currently living in a country where those in greatest need are being denied help?

A Finnish friend of mine, Katja Valkama, who was doing research on social policy in the UK asked me: “Why do people say all these negative things about ‘welfare’? In Finland welfare just means well-being.”

Exactly.

The term ‘welfare state’, was coined by Archbishop William Temple, and it was certainly meant to capture the idea that we needed to ensure that our social arrangements – underpinned by law, democracy and the power of the state – worked to guarantee everybody’s welfare – everybody’s well-being.

And the five main pillars of the welfare state still do so today:

  1. Health – The NHS provides us with universal healthcare
  2. Education – Public schools provide us with free education up to 18
  3. Income Security – Pensions and benefits provide some income security
  4. Housing – Housing benefits and social housing provide some protection from homelessness
  5. Disability Support – Local government provides some rather limited social care to people with disabilities and older people who are frail and need assistance

As my ordering suggest – some systems work much better than others and interestingly the ones we value most are:

  • The most universal ones, with no means-testing
  • The ones we forget are part of the welfare state

The word welfare – and its associated stigma – seems to attach itself most closely to social security and to any systems that seem to be just for the poor. This is despite the fact that the biggest benefit – accounting for about 50% of all benefits – is the state pension – a universal benefit. We have somehow allowed welfare and the welfare state to become stigmatised; this is despite the fact that the largest parts of the welfare state remain popular and so have been relatively protected from recent cuts.

On the other hand, the reason why the cuts of austerity have fallen so heavily on disabled people is that they are a group that is particularly dependent on the less universal elements of the welfare state: housing, care and benefits. These are politically easy things to cut because most people think they have no stake in them.

It is particularly important to recognise that our current problems are not so new. Things have been moving in this direction for several decades. For instance if we compare our situation today to the 1970s three things stand out:

  1. The poor have been made poorer, by a mixture of economic change and the lower value of benefits
  2. The rich have become a lot richer, but they do pay a little more in taxes
  3. Most people are in the middle and they are about the same – their wages have dropped, but the difference has been made up by benefits (disguised as tax credits, pensions, housing benefit etc.)

Austerity has recently made things much worse the poorest. But the system has been getting worse and worse for over 40 years. Over time its main function has shifted so as to subsidise the incomes of the middle-classes. But this has been managed in a way that enables them to psychologically distance themselves from those stigmatised groups that they see as beneath them. This is today’s double injustice: we steal from the poor, but heap blame and stigma on their shoulders at the same time.

What would you say to those who argue that the welfare state is no longer necessary in modern Britain?

It’s really important to realise that the development of the welfare state is correlated – above everything else – with the growing insecurity of the modern world. Our productivity or average wealth is irrelevant: people can starve or be forced into prostitution, homelessness or suicide even if society as a whole gets wealthier.

Average wealth is irrelevant, it is equality and income security – not economic growth that is most important.

In fact our amazing productivity has only been achieved by sacrificing (often not willingly) basic economic securities:

  1. First we lost the security of the land and millions were forced to come to the towns for work, and they then became dependent on ’employment’ and those who did not fit into this system were forced into the workhouse.
  2. Second craftsmen and labourers lost the security of their roles as machines produced more for less.
  3. Third we discovered, through the Great Depression, and many other bubbles, slumps and downturns, that even a job was no security. We can now manufacture droughts and famines through bad planning, economic anxiety and panic.

We discovered that the modern industrial world is no protection from growing inequality and radical insecurity – what Simone Weil calls rootlessness. These injustices then inspired revolutionary hopes and fascist reactions. This unleashed war, revolution, terror, eugenics and the Holocaust.

The welfare state – which had its seeds in Bismarck’s Germany – was always a way of replacing the basic securities that people desperately need in a world that had lost the older securities of land, church and community.

Nothing about the current state of the economy makes the welfare state less necessary. Income insecurity is even more extreme today than before the War. Our incomes are far more dependent on Government-run systems and subsidies. We simply take for granted the enormous benefits that come from the welfare state and the security – even its current inadequate form – that it provides for all of us.

We’ve gone to sleep and we’ve forgotten all that we’ve come to rely on.

The organisation you run is called the Centre for Welfare Reform. Can you give us some of your thoughts how the welfare state could be reformed for the good of all?

I do wonder whether it was a good idea to name the Centre as the Centre for Welfare Reform. The term ‘welfare reform’ is now so toxic and so closely associated with the changes introduced by the Coalition Government that it is quite confusing. However, I think that a civilised society will always want to ensure that it is organised in the best way it can be to ensure the welfare of all its members; so I think welfare reform – true welfare reform – actually improving how we take care of each other – will remain an important project – even if we’re not sure what to call it any more.

For me the central challenge of improving the welfare state was set out by the philosopher Jeremy Waldron:

Above all, I think the idea of citizenship should remain at the centre of modern political debates about social and economic arrangements. The concept of a citizen is that of a person who can hold their head high and participate fully and with dignity in the life of their society. (Liberal Rights, p. 308)

What this requires is up for debate, but I think we can mark out the two extremes that we must avoid – the Scylla (rocks) and Charybdis (whirlpool) of welfare reform between which we must steer:

  1. We must avoid the assumption that the state is some rational and benign entity who can be trusted to simply meet our needs and solve social problems on it own. This way of thinking is fundamentally undemocratic and it treats citizen as non-citizens – as passive, dependent and lacking in responsibility. The last 40 years, and particularly the last 7 years, have clearly demonstrated that the state cannot be left alone with this task of taking care of us.
  2. We must also avoid the assumption that we have no need for the welfare state, that we can all manage alone, or in our families. Citizens are not lone wolves, consumers or producers; they are people who need to live together and need to work together to build a meaningful and mutually rewarding world.

What this means is that we must look for welfare reforms that are going to encourage us to be the best that we can be both singly and together. We need to create a world where everyone is included, everyone is an equal, everyone is treated as a full and valued citizen.

So, what might some positive reforms look like?

Briefly I would suggest the following:

  1. The basic idea of the NHS remains sound – what we will want to do is bring it closer to our communities. Professionals sometimes forgot their core purpose – to teach, assist and enable.
  2. Schools needs to be freed from the tyranny of regulation and the phoney idea that they can prepare people for work. Education should be more inclusive and focus on building our capacity to be citizens.
  3. Income security needs to be radically reformed, and at its centre needs to be the idea of a basic income – a secure income that is enough for each of us to live a life of dignity.
  4. Housing needs to become a right and a fundamental responsibility of local communities must be to ensure everyone can live in their own community and not be forced out by increased housing costs. Citizens should belong where they live – and they should not be forced out of their communities by ‘market forces’. I believe a Land Value Tax, which ensure property owners support non-property owners will be the core reform required.
  5. Social care – or disability support – needs to be established as a universal, non-meanest-tested right for all of us. This is entirely possible and affordable.

Underpinning all of this – I believe – will have to be a resurgence of genuine democratic behaviour and of constitutional reform. People need to be free in order to be citizens, so that they can challenge, engage and collaborate in order to build the society we need. We will need new constitutional arrangements to establish, monitor and protect our human rights, and we will need a renewed civil society – with social organisations that are willing to speak out and stand up for justice.

I suspect that, along with secure social rights, established at a national level, we will need to pay much more attention to the local. Meaningful citizen action and community life can only becomes possible if some powers are decentralised and so people can focus on change at a personal, family and community level.

Of course much of this will seem a dream. But the post-war welfare state also seemed like a dream. I suspect it is only dreaming that will save us from years of further moral and social decline.

Australia’s Pride, England’s Shame

How Australia is taking the lead in disability rights and social care

I have just returned from 3 weeks in Australia where I have been working with disability advocates, families and support organisations. The question we were exploring is how can we best support our own active citizenship and the citizenship of others. I was also able to be part of the launch of Citizen Network Australia in Perth and it was fantastic to hear people’s enthusiasm about building a global movement for citizenship for everyone – for a world where everyone matters.

The trip was also a chance to reflect again on the development of NDIS. Australia’s National Disability Insurance Scheme (NDIS) is without doubt the most exciting, most ambitious and most perilous attempt to reform disability support and to bring it in line with human rights and the principles of independent living. All around the world, we have a stake in this reform, because no other country has been brave enough to introduce such an important reform.

Critically NDIS aims to do three vitally important things:

  1. Properly fund the support needs of all people with disabilities (including many people with mental health problems) under pension age.
  2. Remove all means-testing so that every Australian has the security of knowing that the system will be there for them, no matter their income.
  3. Ensure all funding is individualised and under the control of the person or their representative, so that people can get support that makes sense and enable them to be a full and active citizen.

This is brilliant – if Australia achieves this it will have moved itself from the back of the pack in disability rights to become a true world leader.

This is in stark contrast to my home country, England. Similar reforms in England, which began with the Independent Living Fund (ILF), Direct Payments and then Personal Budgets all promised much in terms of increasing people’s level of control over their own support. However these achievements pale into insignificance alongside the vicious means-testing and the severe cuts that began in 2009. There are 700,000 fewer people now getting support than in 2009, a drop of about 40% – and these problems are only getting worse. The United Nations has severely criticised the UK for its failure to respect the human rights of its own citizens, and their criticisms are entirely justified. Social care in England remains a ‘Poor Law’ service – a poor service, for the poor, that keeps you poor.

We have still not learnt that genuine and positive reform is possible; but it begins by bringing together people with disabilities – all disabilities – families and support organisations to campaign and to explain – not so much to Government – but to the general public – why a right to disability support (what England calls social care) is a fundamental human right. I continue to work with the Socialist Health Association to encourage the Labour Party to develop a more positive and ambitious vision. I am extremely grateful to the Australian disability movement for showing us the way ahead – we just need to follow them.

However there are some major challenges ahead. Having a plan is one thing; putting that plan into action is something entirely different.

I was in Australia when the details of NDIS were first announced and I met with the design team – the civil servants charged with defining how NDIS was to be delivered. My analysis, which I went on to publish (with my usual tact and diplomacy) was that the design of the system was very poor indeed. There remains a severe danger that the system will become enmeshed in centralised bureaucratic controls that undermine the basic human rights that NDIS aims to respect.

Moreover, many of my friends in Australia are the people who called for these reforms and who continue to work to innovate and improve the system so that disabled people and families are put in charge of their own lives. They are now on a rollercoaster of emotions as they see enormous progress in some areas, matched by the development of systems that seem damaging or just plain peculiar. You can read a moving story from one woman’s perspective here.

It would be tempting to say “I told you so.” But I don’t think that’s the appropriate response, and my last visit to Australia has left me much more encouraged than down-hearted.

First of all Australia is living up to its promise to properly fund NDIS and this is no small achievement. Second, while many of the detailed systems do seem crazy, they can all be resisted and reformed. In fact even more encouraging than the progress around NDIS is the continuing sense of passion and determination amongst Australian advocates and disability leaders. They know that they can achieve so much more and they know that they can – despite all the obstacles – make the system accountable. Disability advocates have been able to achieve more change and have created more transparency than in any other countries that I am familiar with, including: England, Scotland, Finland, New Zealand and the USA.

What is more, I see increasing signs of collaboration between different kinds of disability advocates around the issue of genuine choice and control. For example, Vicserv has pulled together a wide-ranging alliance of disability leaders to explore how to define good practice in self-directed support. Likewise the Self Direction Collaboration Network brings together a range of brilliant advocates, leaders and facilitators for shared work on turning the dreams of NDIS into practical reality.

The challenge may be to simply to hold one’s nerve and to holdfast to the original intentions of the NDIS. The current system is changing and evolving in such a fast, complex and unpredictable way that it is easy to be mesmerised by it. When it does crazy things that don’t make sense then its natural to be disappointed and angry. But it is possible to fight-back and often it is possible to work around the problem.

I was struck by how the innovative organisations that I worked with in Western Australia, like Avivo and My Place, were also having to remind themselves that they’d already spent decades working around the rigidities of poorly designed systems. The capacity to respond creatively to bureaucratic rigidity hasn’t disappeared simply because the funding body has changed from the State to the Federal government.

It is important to remember that important changes and innovations do take time and that NDIS involves at least two distinct innovations, both of which are at different stage of their evolution. Innovations evolve over time and go through distinct stages as they (and if they) evolve. Partly NDIS is introducing a model for calculating need, and ensuring everyone gets a suitable package of support. This is priority for the system, and this is moving into the stage of mainstream implementation – Stage 3.

A graph showing how innovations develop

Where NDIS is on the innovation curve

But NDIS also promises flexible funding that people can control and here progress is at much more primitive stage – at best early Stage 2. This may seem disappointing, but it’s important to recognise the reality of how these kinds of changes take. Individualised funding began in the 1960s (in California) and the first UK models began in the 1970s. When I first came to Australia and talked about individualised funding in 1999 everyone looked at me like I was crazy. When I next came back in 2008 I found handfuls of people and families who had got self-managed supports, but they had been told not to tell anyone – they were ‘State secrets’ – in theory not allowed, and if you talked about it you might have it taken off you. Today the idea of personalised support and self-management has been normalised – although the reality is a long way behind. This is how progress happens.

I left Australia, not only encouraged, but also thinking that there is much more we could do to work together globally. The battles in Australia are the same battles that we’re facing in other parts of the world. In each country, where people have been inspired by the desire for citizenship, equality and inclusion, then people and families have been able to find a way through to create better support solutions. Countries can learn from each other, advocates can help each other, we can share the lessons we learn to speed up the process of change. For instance, we might be able to use Citizen Network as a global alliance; we can start to share examples of the very best practice to feed our courage and strengthen our confidence.

We launched Citizen Network in November 2016 and already there are 10 countries who with national coordinators and hundreds of people and groups have joined as members. It is still early days, but we have all the reason in the world to work together for a better world, where everyone matters, where everyone can become a full citizen. Why don’t you join us?

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.

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 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.

The Blood Money of Charity or Why Entitlements Matter

If the present order is taken for granted or assumed to be sacrosanct, charity from the more to the less fortunate would seem virtuous and commendable; to those for whom the order itself is suspect or worse, such charity is blood-money. Why should some be in the position to dispense and others to need that kind of charity?

An infidel could ignore that challenge; for apart from faith in God there is really nothing to be said for the notion of human equality. Men do not seem to be equal in any respect, if we judge by available evidence. But if all are are children of one Father, then all are equal heirs of a status in comparison with which apparent differences of quality and capacity are unimportant; in the deepest and most important of all – their relationship to God – all are equal.

William Temple, Christianity and Social Order

This quote perhaps helps remind us that the Church has often been a powerful advocate of real social justice. Archbishop Temple does not seek to position the Church as a bestower of charity; instead he demands that society recognises the genuine rights that are created by our human needs.

He also reminds us that equality is the foundation of social justice – we simply are equal – in some profound moral sense – despite all our obvious and great differences. This fundamental equality of moral worth is central to our moral codes (whether or not you believe in God). There is also an aspiration that many of us share – to live ‘as equals’ in a community where those differences can be reconciled through our equal citizenship. The barriers to such social equality are great indeed – but the moral appeal of such equality is hard to erode – despite all the prejudice, discrimination and injustice that is such a feature of the modern world.

An example of this battle for equality is the conflict over ‘entitlements’ that rages around people with disabilities internationally. In the UK today the entitlement to social care is under a double attack: (a) funding for that entitlement is being cut by 33% (from 2010 to 2015) and (b) many local authorities are now undermining a policy position which had treated ‘personal budgets’ as the person’s money – an entitlement. Instead people find their control eroded by increasing regulations, bureaucracy and direct interference.

On the other side of the world, Australia, as it begins to implement its National Disability Insurance Scheme (NDIS), is making a globally important commitment to secure the rights of persons with disabilities in line with the UN Declaration and the UN Convention on the Rights of Persons with Disabilities. However, even in this context, policy-makers struggle with the idea that disabled people are actually owed the intended budgets – that these budgets are entitlements which belong to people:

“It’s Jack’s money, not the government’s money.”

I will not rehearse here all the arguments for treating such funding as an entitlement (I have done it elsewhere and I have the feeling I will have to have another go soon). I simply want to observe the starkness of the choice:

If we give people money they are either entitled to it or they are not. If they are not entitled to it then why are we giving it? We would be giving what we ought not to give. If they are entitled to it then it is theirs – not ours.

What is at stake here – as Temple rightly observes – is whether we are giving people what they are properly due, or whether we are just giving the blood money of charity.

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