Person Centred Planning and Care Management with People with Learning Disabilities

Steven Carnaby, Paul Cambridge

• Publisher: Jessica Kingsley Publishers
• Year: 2005
• ISBN:
  9781846421402
• Topic: Education
• Subtopic: Learning Disabilities

This excellent, informative and well presented, a book provides the reader with fourteen edited chapters covering an area of policy and practice that is quite specific but will inform anyone interested in the development of a service user participation ethos in adult social care. It is a book that is relevant to managers and practitioners, both as students and qualified professionals, as well as academics. Care management is now well established in the everyday practice of predominantly statutory organisations. This book revisits the principles of this method of assessing and planning the care needs of adult service users, and introduces Person Centred Planning (PCP) as a suitable method for ensuring that much of the empowerment rhetoric care management is actually realised.'

- British Journal of Social Work

'Part of the attraction of this book is its strong practice component. This is applicable to the different professionals working with people with learning disabilities, in whatever their service configuration. For students, the book will also provide a good introduction to the impact of person centred planning and its connections to a long history of similar initiatives.'

- Journal of Interprofessional Care

'This book is a stimulating and challenging read of those working in service development generally, as well as learning disability services. There is a potential broad care management readership that might also find this relevant and interesting.'

- Journal of Interprofessional Care

'This is an important book. It brings together chapters by many of the foremost researchers and practitioners in person centred planning. The book contains many ideas for taking the PCP process to a higher level of sophistication to really underpin the future development of appropriate and effective services.'

- Community Living

'This book will help social workers to reconnect with the core values of their profession and to challenge institutionalised policies and practices. It has proven to be a valuable teaching resource and whilst its focus is on people with learning disabilities, the principles of PCP that it raises are relevant to any service user group and social work arena. Highly recommended.'

- Professional Social Work

'There are many important issues facing the care management system today in the light of person-centred planning and approaches, and you would be hard-pressed to find a better collection of insightful and radical thinkers in this area than those featured here. It asks hard questions, and challenges the professional to adopt more inclusive and accessible work practices. Wherever you work in the field of learning difficulties you should read this book carefully and aim to put "person-centeredness" at the core of your practice.'

- Community Care

'You would be hard-pressed to find a better collection of insightful and radical thinkers in the area of care management. Wherever you work in the field of learning difficulties you should read this book carefully and seek to put "person centredness" at the core of your practice. The challenge for professionals, is making it a reality for individuals.'

- Community Care

This timely book provides a reflective analysis of person centred planning for people with learning disabilities, complementing policy initiatives that focus on individualised planning and service user involvement. Drawing on practical experience and research findings, the contributors explore policy and practice issues, including:

* advocacy and empowerment

* risk management and adult protection

* inter-agency and inter-professional working

* ethnicity and culture

* de-institutionalisation.

Vivid case studies illustrate best practice in person centred planning, and the authors offer a rich variety of ideas for increasing the participation, self-esteem and quality of life of people with learning disabilities. This practical and accessible text is an invaluable guide for policy makers, carers and social work managers, academics and students.

CHAPTER 1

Introduction and Overview

Paul Cambridge and Steven Carnaby

This book aims to be a departure from the discourse on person centred planning (PCP) developed since its promotion in Valuing People (Department of Health 2001) and subsequent implementation by the Valuing People Support Team. Indeed, it is a departure from the tendency to see person-centred systems in services as isolated from each other. This most evidently includes other micro-organisational arrangements such as care management and micro-budgeting arrangements such as direct payments, but also wider systems and processes at the macro-organisational level such as purchasing and commissioning. These broader issues include among others inspection and service standards, adult protection, risk management and partnership working. All such arrangements have potential relevance to how PCP works and what it can achieve for individual service users as well as for services for people with learning disabilities more widely.

Valuing People made the link between care management and person centred planning explicit and observed that organisations and their cultures would also need to change if person centred planning and services were to work well:

care management will continue to be the formal mechanism for linking individuals with public services. Its systems must be responsive to person-centred planning and have the capacity to deliver the kinds of individualised services likely to emerge from the process. (Department of Health 2001, p.50)

However, it left social services departments and learning disability partnership boards to decide on the nature, form and extent of any relationship. Valuing People also recognised the need for wider systems links, stating that person centred planning must ‘link effectively with other plans including vocational plans, Health Action Plans, housing plans and communication plans’ (Department of Health 2001, p.50).

Such plans are also generally person-centred and should connect with PCP. They may also require systems level resourcing, suggesting important links with care management and commissioning more widely.

In exploring the links between person centred planning and care management and in reviewing ways productive PCP and care management can be taken forward, this book highlights the important role individual practitioners and managers play in making systems work well and in implementing change effectively. We believe that service managers and practitioners cannot hope to develop person-centred services simply through introducing the device of PCP, however that happens to be defined. Individualised or person-centred approaches are needed on a number of fronts in our work with and support of people with learning disabilities – individualised communication, advocacy and self-determination and the development of positive self-images and learning disabled identities. At one level it is evident that PCP cannot successfully operate in isolation of other work and at another that it has the potential to provide a vehicle or at least a route for fostering person-centred initiatives and action. User participation is now not only desirable or feasible, but essential at all levels of service and resource organisation, providing a prerequisite to successful PCP and a wide range of user outcomes developing from PCP. Chapters in this book are dedicated to promoting such an ethos and provide individual service and user case studies to illustrate how collaborative development and partnerships with service users can promote PCP and person-centred action.

One of the objectives in commissioning and collating the wide range of material presented here was to balance a general overview of PCP and care management with an exploration of key themes relevant to their joint operation and relationship. By using a combination of chapters looking at issues of structure and process, best practice case studies and key issues for implementation we wanted to generate useful lessons by encouraging contributors to share their ideas for policy and practice development. To be useful beyond learning about an effective way to work with and support a particular service user, lessons need to be transferable from one individual to another, from one set of local circumstances to another and from one service system to another. They also need to be generalisable at the policy level while remaining relevant to local practice and individual supports. As such they also need to be capable of being widely disseminated and specifically fed back to those involved in implementing and developing PCP in order to improve practice and achieve desired outcomes and goals. These include increased participation and decision-making by people with learning disabilities in addition to final outcomes such as improvements in people’s quality of life, self-esteem, life satisfaction and self-determination.

Two common but polarised assumptions are often made when hearing about the work of others. These are that successful work from elsewhere can simply be replicated and that learning from individual cases or situations can be readily transferred. The messages in this book contradict both of these assumptions. We assert that much can be achieved if our practice is informed by an effective and thorough review of the evidence and circumstances, alongside the will to implement positive change. This is why most of our own research and that of others at the Tizard Centre is applied in its nature. We also recognise that evidence-led change is not always easy to achieve in services for people with learning disabilities, particularly with service organisations where institutionalised practices, set expectations or conventional attitudes predominate. All service users are individuals experiencing unique circumstances and, while this limits the transfer of learning, we also have the capacity to interpret differences and build constructive lessons.

This book therefore sets out not only to illustrate what can be achieved, but also how to achieve positive change. Our work as researchers, practitioners and service managers has amply demonstrated that PCP and care management are concepts about which we have much accumulated knowledge and experience – albeit redefined within the new policy paradigm of inclusion and the new language of person-centred services. Twelve years ago the Care in the Community initiative expected individual care planning (ICP) or individual programme planning (IPP), along with care management, to be part of each service, helping develop individual services and user choice but also as a means to manage the transition of individuals and resources from long-stay hospitals to community-based provisions (Cambridge, Hayes and Knapp 1994, Cambridge et al. 2002; Knapp et al. 1992). Yet even under a central policy spotlight, individual planning and care management developed in a variety of ways, based on ideologies, management and professional imperatives, operational expediency and wider demands from outside the service system (Cambridge 1992; Renshaw 1987).

We face a similar challenge now with PCP and care management. When measured against the original care management experiments in England (Challis and Davies 1986; Challis et al. 1990; Davies and Challis 1986), a wide diversity in care management practice emerged following its mainstreaming in the 1990 community care reforms (Department of Health 1989, Department of Health/Social Services Inspectorate 1991), including learning disability (Cambridge 1999; Cambridge et al., in press). Care management has shifted from a carefully constructed intervention and process, where care managers conduct a series of core tasks with limited caseloads, to a general policy instrument where care management has become demand driven, determined by administrative factors and constrained by resources.

Unless we scrutinise and review the implementation of PCP long term we are likely to find ourselves in a similar situation, where approaches to PCP diversify and proliferate outside an understanding of the advantages and disadvantages of different approaches. We need to ensure that PCP is not hijacked by self-interested organisational or professional agendas, and that its potential is not deflected. While there are possibilities for an efficient and effective interdependence between PCP and care management, with care management providing a sound foundation, there is also a risk that care management will distort, dilute or at worst corrupt PCP. We discuss the possibilities and potentials of such a relationship in more detail in Chapter 14.

The last decade or so of community care has seen the development and implementation of a collection of variously named arrangements for placing service users at the centre of services or service planning at both micro- and macro-levels. These principally evolved from and had their roots in the philosophies of normalisation/social role valorisation (Wolfensberger 1972, 1980), an ordinary life (King’s Fund Centre 1980), the five service accomplishments (O’Brien and Tyne 1981) and more recently the more ostensibly political notion of social inclusion (Department of Health 2001). They centred on or promoted lifestyle or cultural themes such as housing, community integration, participation, friendships and social networks, personal relationships and sexuality, skills and independence and so on – all things which remain important for everyone but which can also be introduced through PCP and its outcomes. We have over two decades of experience working to these traditions and it would be irresponsible not to take account of our accumulated experience in providing community support and developing person-centred work in implementing and reviewing PCP.

Some of the issues stemming from this body of work are indeed systemic – for example, the tension between resource-led care management and professional advocacy, the vulnerability of the service user within the contract culture and the tendency to see care management or individual planning as a device for organisations rather than service users (Cambridge and Brown 1997). Such conflicts have become evident in the very different approaches to and arrangements for care management in services for people with learning disabilities (Cambridge 1992, 1999; Cambridge et al., in press) and, in relation to PCP, apparent in individual care planning arrangements in services for people with learning disabilities (Carnaby 1997, 1999).

While no one book or study can hope to address and resolve all such issues and questions, especially when those involved in developing and implementing PCP are only just beginning to learn from their experiences, the material presented here has been developed to help us make a start.

This book is structured into three parts. Part One in some ways can be seen as the heart of the discussion, as it examines the structural and process considerations underlying PCP and care management. Chapter 2 by Jim Mansell and Julie Beadle-Brown provides a baseline perspective on PCP and person-centred action, reviewing the policy location and practice and research evidence on person centred planning arrangements. This makes for helpful scene setting and an important reference point for later chapters. The authors discuss issues relating to the effectiveness of planning systems, the potential gaps between noted descriptions of planning models and their implementation and finally describe their vision for how services can achieve person-centredness in tangible ways.

Chapter 3 by Simon Duffy and Helen Sanderson explores the potential relationships between PCP and care management, as the authors debate ways in which care managers can support and enhance service user empowerment rather than hinder its development. Much of this discussion requires clarity with regard to the mechanisms of resource allocation and its distinction from the co-ordination of support, and this discourse is well articulated here. Central to the chapter’s material is the proposal that an ‘exchange model’ of assessment, as described by Gerry Smale, is more likely to lead to a person-centred understanding of what support is needed. Duffy and Sanderson go on to discuss a ‘Five Gear Model’ of person-centred care management practice and propose that its adoption has the potential to yield radical results.

In Chapter 4, Tony Osgood combines personal experience with a review of the literature on individual planning and person-centred approaches to discuss the tensions between service-led and person-led cultures. Through the use of vivid case material and valuable insight, he gives an honest, frank account of the risks involved when services take up the language of PCP without managing to achieve genuine change.

Building on this foundation, Part Two takes the discussion points raised in these early chapters by focusing on best practice experience in PCP and care management. These middle chapters draw on service development experience and initiatives from across England. In their account of user involvement in Chapter 5, Doris Clark, Robert Garland and Val Williams outline an approach from the most important perspective of all – that of people for whom the rhetoric and practice of PCP is primarily intended. Privileged with these personal accounts of clearly effective person centred planning and support, we are able to see the merits of an approach that is seen to be listening to people in meaningful, non-tokenistic ways and, as importantly, enables action to be taken with regard to what has been heard. The very creation of the partnerships required to write the chapter also provides key messages in empowerment and real participation by people with learning disabilities in the PCP debate.

The concept of meaningful participation is also central to Chapter 6, which looks at involving young people with learning disabilities in their own transition plans. Steven Carnaby and Patricia Lewis report on the ways in which one particular school decided to review its approach to transition planning. In finding itself lacking in terms of effective, person-centred practice, the school set itself the task of developing a range of techniques and strategies to ensure higher levels of individual participation in the transition process. The chapter provides a number of innovative ideas for making the challenging time of leaving school less threatening and more empowering.

In Chapter 7, David Dick and Karin Purvis look at how the development of total communication can contribute to the PCP process. Using their experiences in Somerset as their material, the authors discuss the potential obstacles to establishing a culture that is committed to person-centredness and helpfully provide valuable ideas for how these obstacles can be addressed at...