Tizard Learning Disability Review Emerald Article: The limits of personalisation Simon Duffy

Tizard Learning Disability Review

Emerald Article: The limits of personalisation

Simon Duffy

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To cite this document:

Simon Duffy, (2012),"The limits of personalisation", Tizard Learning Disability Review, Vol. 17 Iss: 3 pp. 111 - 123

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Feature

The limits of personalisation

Simon Duffy

Abstract

Purpose– The paper’s aim is to explain the development of the concept of personalisation and its dependence upon prior innovations such as independent living, person-centred planning and individual budgets and explore its meaning, limitations and future prospects.

Design/methodology/approach– The paper takes the form of an analytical and historical review of ideas that have been important in the recent history of public policy for people with learning disabilities. Findings– People with learning disabilities, along with other disabled people, have been engaged in a struggle to achieve full citizenship. The recent reforms that go by the name of ‘‘personalisation’’ may mark an important stage in the development of a fairer system, but on their own they will be insufficient to achieve that objective.

Originality/value – Personalisation is placed, with all its strengths and limitations, within the wider context of the development of policies for people with learning disabilities.

KeywordsPersonalization, Individual budgets, Innovation, Citizenship, Public policy, United Kingdom, Learning disabilities

Paper typeConceptual paper

Introduction

The term ‘‘personalisation’’ has come to dominate policy and practice for people with learning disabilities. However, it is a term that can be used in many different ways. The term was first used by Charles Leadbeater who argued that public services required less standardisation, more flexibility and greater engagement with citizens (Leadbeater, 2004). Innovations like direct payments or individual budgets were cited as markers of a new phase in the development of the welfare state. The term was then adopted by central government to describe a whole range of its own policy initiatives and enthusiasms (Department of Health, 2008).

The rhetorical benefits of the term are obvious. Personalisation appears broad, permissive and inoffensive. It suggests that public services are a good thing, but that they must now become more personal. It encourages professionals to see themselves as co-producing personal solutions in partnership with citizens. The term helps neutralise any concern that these reforms are simply an effort to privatise the welfare state. For Leadbeater, personalisation was not about services moving out of public control, rather it provided an opportunity for the public to take more control over their own services.

This argument is all the more powerful because the innovations cited were certainly not developed by a privatising state, rather they were developed by disabled people and their allies. For example:

B Independent living: first developed by Ed Roberts and other disabled people in California in the 1960s (O’Brien and Duffy, 2009).

Simon Duffy is based at The Centre for Welfare Reform, Sheffield, UK.

This paper builds on the author’s 2011 Tizard Lecture entitled ‘‘A fair society and the limits of personalisation’’ (Duffy, 2011a). The focus is on the nature of personalisation: its roots, impact and future prospects. The author’s own work has been so intimately involved in developing and testing ideas associated with personalisation that this paper cannot hope to be objective. However, it does offer an analysis rooted in many years of practical and theoretical effort.

B Direct payments: first developed by disabled people in Hampshire in the 1980s in order to help people with physical impairments to leave residential care (Glasby and Littlechild, 2002). B Supported living: pioneered in England by Peter Kinsella from 1992 and used to help people with learning disabilities move out of residential care into their own homes (Kinsella, 2000).

B Person-centred planning: first developed by Beth Mount working to help people with learning disabilities make friends and contribute to their community (Mount, 1987). B Individual budgets: first used in Glasgow in 1996 to help people leave institutions and

move into their own homes with individually designed supports (Fitzpatrick, 2010). However, although it is true that these innovations were not developed for the sake of privatisation, it is not true that they were developed to promote personalisation. In fact, for those who developed these innovations, the notion of personalisation was irrelevant. It was not the idea of personalisation that inspired these innovations, rather it was these innovations that inspired the use of the term ‘‘personalisation’’ as part of contemporary political rhetoric. In this paper I will argue that:

B the innovations associated with personalisation were instead inspired by citizenship; B each innovation treats disabled people as citizens;

B these innovations help people achieve greater citizenship; but

B these achievement are limited by the lack of more fundamental reforms; and

B at best these innovations are only stepping stones for a fairer society that takes citizenship for all seriously.

1. Inspired by citizenship

I have already listed five innovations, that are cited as examples of personalisation, and there are in fact many more that I will not have room to include in my analysis (e.g. peer support, supported employment, citizen advocacy, self-advocacy, self-directed support). To argue that none of these innovations were inspired by personalisation is straightforward; for all these innovations existed before the term ‘‘personalisation’’ was used to describe them. Moreover, none of the early innovators used the idea of ‘‘personalisation’’ to describe what they were attempting to achieve.

However, these innovations were inspired, but by concepts that are of greater moral importance than personalisation. Moreover, I think I can show that, for all their many differences, each innovation shares a common interest in promoting citizenship for disabled people.

a. Independent living

Independent living was developed by disabled people in California who worked together to enable disabled students to attend college. In 1972 a Centre for Independent Living was developed:

It would be run by disabled people; approach their problems as social issues; work with a broad range of disabilities; and make integration into the community its chief goal. Independence was measured by an individual’s ability to make his own decisions and the availability of the assistance – from attendants to accessible housing – to have such control (Shapiro, 1993, p. 54).

The concept of independent living continues to be a powerful organising idea for the disability movement, stimulating efforts to organise mutual support and challenge existing welfare systems (Equality and Human Rights Commission, 2009).

b. Direct payments

Direct payments give cash to disabled people to purchase their own support. The innovation began in the 1980s when a group of disabled people in Hampshire, England fought to leave residential care. A key research report argued:

For disabled people themselves, the principal advantage would seem to be that payment schemes offer a greater degree of choice and control than direct service provision. This in turn leads to more reliable and flexible support arrangements which are closely matched to individual need (Zarb and Nadash, 1994, p. 163).

This report and pressure from disabled people led to the UK’s 1996 Direct Payments Act and increasing numbers of people taking advantage of direct payments (Daveyet al., 2007).

c. Supported living

In 1992 Peter Kinsella launched the supported living movement in the UK to challenge the residential care services that had become the norm for people with learning disabilities. He wrote that supported living means people with learning difficulties deciding:

. . .how you live, who you live with (if anyone), where you live, who supports you and what you get help with (Kinsella, 2000, p. 3).

This movement led to increasing numbers of people with significant cognitive impairments moving into their own homes rather than into residential care.

d. Person-centred planning

Person-centred planning was developed by Beth Mount and others who were dissatisfied with the way professional care planning restricted people’s lives to professional services. An early pioneer, John O’Brien, wrote:

Person-centred planning did not ignore disability, it simply shifted the emphasis to a search for capacity in the person, among the person’s friends and family, in the person’s community, and among service workers. A person’s difficulties were not relevant to the process until how the person wanted to live was clear. Then it was necessary to imagine, and take steps to implement, creative answers to this key question, ‘‘What particular assistance do you need because of your specific limitations (not labels) in order to pursue the life that we have envisioned together?’’ (O’Brienet al., 1998, p. 21).

Since its adoption byValuing People(Department of Health, 2001), efforts have been made to extend person-centred planning across services for people with learning disabilities in England (Department of Health, 2010).

e. Individual budgets

Individual budgets were first developed in Scotland to enable the design of individual supports for people with learning disabilities leaving institutions (Needham, 2011). They were seen as a tool for genuine empowerment:

The fundamental source of empowerment does not lie in being involved, however worthily, in human service organisations. Human service organisations should not define the status of the disabled person. Instead the disabled person should be seen as a full citizen by right (Duffy, 2004, p. 7).

Individual budgets (now called ‘‘personal’’ budgets) became central government policy for social care in England after the publication ofPutting People First(HM Government, 2007). This is not an exhaustive survey, but a pattern does emerge. These innovations, now seen as exemplars of personalisation, were motivated by the demands of disabled people and their supporters for full citizenship, rather than an aspiration for more personal, flexible service provision. Such provision is important, but not for its own sake; rather because it enables citizenship. Many disabled people, their families and other allies, have been deeply dissatisfied by the way in which welfare services treat them and undermine their effective citizenship (Duffy, 2010).

2. Modelling citizenship

Much of the modern welfare state is delivered by paternalistic and controlling systems that turn people into recipients or ‘‘users’’ rather than treating them as active citizens. This is

particularly true for people with learning disabilities who found that, even when they had escaped the long-stay institutions, they still had only limited control over their lives.

Modern welfare services are dominated by systems of hierarchical and professionalised power. This way of thinking could be called the Professional Gift Model because it treats the service as a gift that is shaped and controlled by the professional (Figure 1; Duffy, 1996). Professionals (whether they be clinicians, teachers, social workers or whoever) are funded by government, which is in turn funded by taxes. This approach reinforces the powerlessness of disabled people, who are not treated as citizens, but as subjects. However, there is an alternative way of thinking about welfare, an approach that is consistent with citizenship. This Citizenship Model begins by placing the person, and their family and community, at the centre of things. Instead of seeing services as gifts from the professional, the Citizenship Model treats services as a negotiated partnership between the citizen and the professionals and that the citizen’s ability to do this is underpinned by their entitlement to direct any necessary resources (Figure 2).

Now, if we examine the innovations associated with personalisation, we find that all of them operate according to the Citizenship Model; all of them model citizenship:

B Independent living supports disabled people to organise their own lives and to connect with community on their own terms.

B Direct payments shift financial control directly into the hands of disabled people.

Figure 1 The Professional Gift Model

Community Contribution via Taxation Government Funding for Services Professional Assessment and Support Person in Need

B Supported living asserts the right of disabled people to make their own housing and support decisions.

B Person-centred planning supports people to see themselves as citizens, with their own lives to lead, not defined by services.

B Individual budgets treat funding as an individual entitlement that can be used flexibly to meet the individual’s objectives.

Each innovation treats the disabled person as an active citizen, and this is the critical change. There is a tendency for public policy thinkers to see these innovations as merely changes within welfare systems themselves (e.g. a new way of rationing and transferring resources); however this is a mistake. More importantly, the innovation provides citizens and professionals with a new mental model by which to critically examine their own behaviour. When you begin to see yourself, or the person you are supporting, as a citizen with rights and the capacity to exercise those rights, then this can have a profound impact on your thinking and practice.

3. Achieving citizenship

Not only do these innovations model citizenship they can also help people achieve greater citizenship. There are at least six keys to citizenship, possession of which shapes whether other see us as fellow citizens (Figure 3; Duffy, 2003):

B Purpose: are you living a life that is authentically your own, reflecting your values, capacities and dreams? If not, then others may fail to see the meaning of your life and other citizens will find it harder to identify your unique contribution.

B Control: are you free and in control of your own life and making your own decisions? If not, then others may feel that you are not an independent agent and they will not respect your decisions or freedom.

B Money: do you have the resources necessary to act independently and follow your own projects? If not, then others may see you as dependent upon the plans of other people and they will not expect you to achieve your goals.

B Home: do you have a place of your own, which you control, within the community? If not, then others may see you as someone who is just passing through, who does not really belong to the local community.

Figure 2 The Citizenship Model

Community Citizen Entitlement to funding Negotiated support Government Professional

B Help: do you need other people and offer them the chance to contribute? If not, then others may see you as superfluous to the community for you do not offer others the opportunity to make any contribution.

B Giving: do you contribute to the community, through work, membership or some other form of giving? If not, then others may not see that you have a contribution to make to a shared world. Citizenship enables diverse individuals to live together as equals; it is not a zero-sum quality. It is possible to live in a society where no one is a citizen; however, it may also be possible to live in a society where everyone is a citizen. Certainly each innovation is explicitly committed to strengthening the citizenship of disabled people:

B Independent living stresses the value of each of the keys to citizenship and explicitly acknowledges that independence is created through social interaction and should lead to increased contribution.

B Direct payments aim to directly increase the money available to the disabled person so that they can achieve independence on their own terms.

B Supported living focuses on the right to have a home of your own and support that encourages freedom and independence.

B Person-centred planning helps to uncover meaning and purpose for people who may find communication difficult or who have become subject to institutional control.

B Individual budgets shift financial control to the individual to enable people to construct a life on their own terms.

However, the central importance of citizenship is not always recognised by social researchers. Consider, for example, the government-funded large-scale research study on individual budgets, the Individual Budgets Evaluation Network (IBSEN). The authors of the final report correctly noted that citizenship was at the heart of criticisms of the old system and the development of individual budgets:

Growing dissatisfaction has been articulated, particularly by working age disabled people, about the inflexibility and unreliability of directly provided social care services. These have been argued

Figure 3 Six keys to citizenship

+

to create dependency rather than promoting independence and impede disabled people from enjoying full citizenship rights (Glendinning,et al., 2008, p. 1).

However, the researchers then made no further use of the concept of citizenship and instead assumed that the central questions could be answered by measuring changes in health and well-being.

This failure to appreciate the importance of citizenship probably reflects the continuing dominance of utilitarianism in social science. [Utilitarianism is the philosophical theory that social value can be reduced to some account of happiness or of preference satisfaction (Mill, 1962). Despite the fact that utilitarianism is a highly controversial moral and political theory it has remained the dominant model for social research (Rawls, 1971; Sen, 2009).] This unwarranted theoretical preference for utilitarianism is unhelpful. It often seems to undermine the perceived value of disabled people and it does not provide the right framework for a critical examination of current systems.

In the end the final IBSEN report was equivocal and it made no significant difference to the final policy position, which had already been formed by other factors (Duffy, 2011b). The efficiency improvements it identified were modest but, as the researchers themselves noted, the design of the research programme was rather problematic, and this rather weakened its significance.

The problems within the IBSEN evaluation were not limited to its failure to focus on citizenship. More importantly, the research programme struggled to recognise that an innovation, like individual budgets, is not a simple intervention. This fact should have significant consequences for the design of effective research:

B The innovation involves complex and multiple adaptations to existing systems and challenges to organisational assumptions. This means that the old system will always tend to resist those adaptations or amend the adaptation in order that it is easier to assimilate. This can quickly lead to significant implementation problems when the necessary leadership and understanding is absent.

B The most important benefits of these innovations arise from changes that are not restricted to changes in funding, services or systems. For example, it is not the individual budget itself that brings about any positive change; rather it is the way in which the individual budget enables change in the person’s life. In the absence of the right environmental conditions no positive change will take place.

B The primary agent of change is not the professional but the disabled person, with their allies. This raises a critical problem of motivation. Researchers often seek to identify interventions that will bring about positive results, whatever the motivation; but this is incoherent if motivation is one of the key ingredients to positive change.

There is an interesting contrast in research processes between the Individual Budget Pilot Programme and the prior research project, In Control, that had preceded and inspired the government’s original enthusiasm for individual budgets (Labour Party, 2005; Cabinet Office, 2005; HM Government, 2005; Department of Health, 2005). Not only was the In Control pilot project motivated by an explicit desire to promote citizenship, it was also active in developing clear models, solving implementation problems as they emerged and finding and supporting leaders and citizens. This approach sees the innovation not as a fixed treatment to be applied to a system but as an active process of partnership and on-going innovation (Jackson and Duffy, 2009).

Although In Control’s budget was dwarfed by the Individual Budget Pilot Programme and its sample size was also very small (n¼31) the findings were very positive, statistically significant and revealing. Individuals (or their representatives) were asked to rate their life in terms of the six keys to citizenship described above, both before and after using an individual budget. People could give each aspect of their life a positive or negative rating. When this data was aggregated, as is shown in Figure 4, it seemed that people could achieve dramatic improvements in citizenship (Pollet al., 2006). In addition these early experiments also led to significant cost efficiencies (Duffy, 2007).

Instead of treating social innovations as if they are straightforward interventions (like a new drug or surgical treatment) it is more useful to see the innovation as a change in the context within which individuals make decisions and improve their own lives. One useful framework for thinking about this is the Real Wealth Model developed by Pippa Murray (Murray, 2010). We improve our own lives by building on our real wealth (Figure 5):

B Gifts: each of us has our own particular gifts, qualities, strengths and needs; life is the expression of these gifts with and for others.

B People: the most important source of our wealth lies in the relationships we have with other people; personal development is impossible without love and support.

B Assets: we each have assets that we can use to develop ourselves; this includes our time and energy as well as money that we can spend or invest.

B Community: the community is the place where we share our gifts, meet new people and use our assets; access to community is vital to finding new opportunities.

B Spirit: our ability to make the most of our real wealth, to bring together gifts, people and assets and to use our community depends upon an attitude of hopefulness.

Figure 5 The dimensions of real wealth

People

Gifts

Spirit

Community

Assets

Figure 4 Summary of data from in control’s phase one report (2006)

–20 –15 –10 –5 0 5 10 15 20 25 30 After Before Community Help Home Money Control Direction

The most plausible explanation for the success of innovations like individual budgets lies not so much in the direct impact of the innovation itself, but in the way that the innovation encourages and enables individuals to use their own real wealth to achieve greater citizenship. We can see this, for example, if we examine the data that exists on how people use their budgets. What we find is that people are achieving greater value for themselves not by improved shopping for services. Instead we find that people are making radically new uses of that funding and ensuring that it is used in ways that better reflect their own real wealth.

Figure 6 shows the data from two research reports that examine how people, who previously used day centres, spent their budget once they had control (Hay and Waters, 2009; Pittset al., 2009). Predominantly, funding was used to access ordinary community opportunities, provide more personalised support for individuals and to support family and friends. Spending on traditional learning disabilities services reduced to nearly nothing.

However, if it is true that it is not the innovation itself that makes the direct difference, but the person, then the effectiveness of the innovation is likely to be very sensitive to:

B The quality of implementation of the innovation and its coherence with other systems. B Wider social, economic and community factors.

B The motivations of the individuals concerned.

If we treat the innovation as if it is a treatment or a straightforward intervention then we will find that it will often fail to deliver the desired outcome. However, it is extremely challenging for public services to achieve complex change and many of the benefits of these innovations will be eroded as they become modified by the welfare system itself.

4. The limits of innovation

I have argued that what is known as personalisation is in fact a range of interconnected innovations that were developed by disabled people and their allies in order to promote active citizenship. The term ‘‘personalisation’’ may be useful because it makes radical ideas seem more palatable; but there is a danger that it will also serve to oversimplify difficult changes. This leads to confused thinking and poor implementation.

For instance, if we reflect on the notion of an individual budget it is clear that this concept can be interpreted in at least two different ways, either as:

1. Individual entitlement: funding that belongs to the person and which they are free to use as they see fit.

Figure 6 Data on the use of individual budgets

0 10 20 30 40 50 60 70 80 Worcestershire Cambridgeshire Car Day centre Employment support Holiday Carer's break Education Friend & family Public transport Personal assistant Help at home Access to leisure

Use of Individual Budgets (Worcestershire & Cambridgeshire, 2008)

2. Individualised public funding: funding that belongs to the state, but is spent with the consent of the individual.

From the perspective of the Citizenship Model it is the first interpretation that is most appealing; from the perspective of the Professional Gift Model it is the second. This ambiguity is not just theoretical. Local areas have implemented individual budgets differently, and there is now a wide variety of approaches to individual budgets. In some areas a budget is provided with a great deal of flexibility and low levels of scrutiny; in other areas there are complex assessments, planning processes and budgets that are rigorously monitored and controlled. The end result is that, in practice, many people with individual budgets do not feel they are really in control (Hatton and Waters, 2011). This ambiguity may partly result from the often limited legal basis for these innovations. Rather than change the law national government encourages local authorities to act within their current powers and duties. As one lawyer notes, ‘‘very little of what is being rolled out under the banner of personalisation is based on any new law’’ (Whittaker, 2011) and many people find they are unable to use their funding flexibly and in the spirit of the original innovation. In a sense these kinds of system innovations are inevitably limited by their very nature. The innovation is developed within a flawed system (otherwise it would have not been necessary) and it is developed in order to make those improvements that are feasible within that flawed system. This means that the innovation is often compromised by its very engagement with that flawed system, and the level of compromise may increase the more extensive the innovation becomes.

At its worst each innovation can be corrupted, fail to bring about the desired changes or even make things worse:

B Centres for independent living can become limited to certain groups of people, perhaps excluding people with learning disabilities, and focused on running services that are commissioned by a local authority.

B Direct payments can be bogged down with bureaucracy, with people restricted to spending their budget on a professionally defined care plan.

B Supported living can be distorted so that, rather than genuine choice and control, people find themselves living in residential care by another name.

B Person-centred planning can become a rote process that merely disguises the continuation of a deep power imbalance.

B Individual budgets can be imposed on people who are then given no additional choice, control or flexibility.

These problems are not the fault of the innovation. Each of the above innovations is a principled adaptation that starts life by challenging a flawed system. However, the impact of the innovation will, inevitably, decline over time if the more fundamental problems that made the adaptation necessary are not resolved. There is an especially high risk for ideas that are adopted by government too quickly. Government can impose new ideas on individuals without exploring why those ideas are necessary. This can have a very damaging quality on the innovation. Reflecting on the fate of person-centred planning, its early pioneers write:

We agree with Ellen Langer that an idea’s utility lasts only as long as people apply it mindfully, and that any tool’s power can be diluted or even misdirected by its mindless use (O’Brienet al., 1998, p. 19).

For the latest innovation, individual budgets, the risk of ‘‘mindless use’’ is very high indeed. Danger signs include:

B Excessive government enthusiasm and target setting.

B Extra funding, spent on consultancy or middle-management posts. B Lack of clarity on rights and responsibilities.

In particular the UK Government’s widespread rhetorical support for personalisation goes hand in hand with a complete lack of attention to the fundamental features of the system which made these innovations necessary. The welfare state, especially the systems used by disabled people, remains dominated by the Professional Gift Model and a lack of attention to the fundamental rights that a decent welfare system should support. This problem demands changes in law, culture and public attitude (Duffy, 2011a).

5. Conclusion

While there is much to regret about the mindless implementation of personalisation and the declining impact of the distinct innovations, there is also cause for some satisfaction. If we focus especially on people with learning disabilities, it is clear that there has been much progress and the innovations explored above have certainly played some role in this:

B People are much more likely to be supported to have positive expectations about their own life and their place in the wider world.

B People are more likely to get support which they can tailor to their own needs.

B People are more likely to have a home of their own and at least some more choice in who they live with and how they live.

B Families are more likely to get support that they can control.

The innovations associated with personalisation are not the only contributors to these changes, but they have played an important role. In particular these innovations help people understand that lives and systems can and do change, even if this takes hard work and effort. The innovation is a signal that change is possible; for if systems can be improved, then people’s lives can certainly be improved.

Moreover, each of the innovations creates a fresh opportunity for disabled people, their allies and professionals to re-imagine themselves in a relationship of equal citizenship. In this way the primary innovators become disabled people, families and professionals together – redefining their roles together, building better lives together. These innovations open doors and, even when just a few take advantage of these new opportunities at first, it shows to others that a better way is possible.

In the end, if these innovations are truly successful, the innovations will disappear. In a world where we each expect to be treated as a citizen and where our welfare systems are organised to support citizenship, then ideas like individual budgets will fade from view. If we are lucky, citizens of the future will look backwards and be surprised that we ever needed to invent a concept like ‘‘personalisation’’ simply in order to help people live decent and fulfilling lives as equals.

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Corresponding author

Simon Duffy can be contacted at: [email protected]

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