Foundations for self-directed support in Scotland

Foundations for self-directed support in Scotland • 3.2 Different levels of outcomes • 3.3 From 'professional gift' to citizenship • 3.4 Assessments based on needs or outcomes-based asse

Foundations for self-directed support in Scotland

MA-OSEP Foundations for self-directed support in Scotland

Foundations for self-directed

support in Scotland

About this free course

This free course is an adapted extract from the Open University course

This version of the content may include video, images and

interactive content that may not be optimised for your device

You can experience this free course as it was originally designed

on OpenLearn, the home of free learning from The Open

University – psychology/foundations-self-directed-support-

Unless otherwise stated, this resource is released under the terms

of the Creative Commons Licence v4.0

Foundations for self-directed support in Scotland

or controlled by The Open University Please read the full text before using any of the content

We believe the primary barrier to accessing high-quality

educational experiences is cost, which is why we aim to publish asmuch free content as possible under an open licence If it proves difficult to release content under our preferred Creative Commons licence (e.g because we can’t afford or gain the clearances or find suitable alternatives), we will still release the materials for free under a personal end-user licence

This is because the learning experience will always be the same high quality offering and that should always be seen as positive – even if at times the licensing is different to Creative Commons

When using the content you must attribute us (The Open

University) (the OU) and any identified author in accordance with the terms of the Creative Commons Licence

The Acknowledgements section is used to list, amongst other things, third party (Proprietary), licensed content which is not

subject to Creative Commons licensing Proprietary content must

be used (retained) intact and in context to the content at all times

The Acknowledgements section is also used to bring to your

attention any other Special Restrictions which may apply to the content For example there may be times when the Creative

Commons Non-Commercial Sharealike licence does not apply to any of the content even if owned by us (The Open University) In

for personal and non-commercial use

We have also identified as Proprietary other material included in the content which is not subject to Creative Commons

Licence These are OU logos, trading names and may extend to certain photographic and video images and sound recordings and any other material as may be brought to your attention

Unauthorised use of any of the content may constitute a breach of the terms and conditions and/or intellectual property laws

We reserve the right to alter, amend or bring to an end any terms and conditions provided here without notice

All rights falling outside the terms of the Creative Commons

licence are retained or controlled by The Open University

Head of Intellectual Property, The Open University

978 1 47300 052 0

Foundations for self-directed support in Scotland

• 1.10 Self-directed support in Scotland

• 1.11 What does self-directed support mean

in practice?

• 1.14 Looking forward to Section 2

• 2 Making personalisation happen: Co-production

• 2.4 The importance of networks

• 2.5 The benefits of social capital

• 2.6 Real wealth

• 2.7 Real wealth in Scotland

• 2.8 The components of co-production

• 2.9 Co-production in practice

• 2.10 The challenges of co-production

• 2.11 Co-production and self-directed support

• 2.12 Summary of key points from Section 2

Foundations for self-directed support in Scotland

• 3.2 Different levels of outcomes

• 3.3 From 'professional gift' to citizenship

• 3.4 Assessments based on needs or outcomes-based assessments?

• 3.5 Outcomes for children and outcomes foradults

• 3.6 Outcomes for children

• Outcomes in practice

• Outcomes and self-directed support

• Impact of an outcomes-focused approach for children

• 3.7 Outcomes for adults

• Outcomes in practice

• Self-managing long-term health conditions

• Impact of an outcomes-focused approach for adults

• 3.8 Needs or outcomes? Children, young people and adults

• 3.9 Self-directed support and outcomes

• 3.10 The challenges of an outcomes-based approach

• 3.11 Summary of key points from Section 3

• 3.12 Investigative task

• 4 Personalisation and risk

• Introduction

• Learning outcomes

• 4.1 Is personalisation risky?

• 4.2 A short introduction to risk

• 4.3 Risk and uncertainty

• 4.4 Risk enablement

• Children: balancing rights and risks

• Risks, rights and responsibilities

• Making decisions about risk

• Personalisation and risk of harm

• 4.5 Adults: balancing rights and risks

• Risk enablement and capacity

• Personalisation and risk in practice

• 4.6 Is personalisation really for everyone ?

Foundations for self-directed support in Scotland

• 5.2 Challenges for the workforce

• 5.3 Self-directed support in Scotland

• 5.4 Self-directed support and the workforce

• 5.5 Fears and realities

• 5.6 New landscape, new learning?

• 5.7 Starting from a different place

• 5.8 Different roles: personal assistants

• 5.9 Different roles: personal assistants

• 5.10 Different roles: Brokerage

• 5.11 Different roles: Advocacy

• 5.12 Regulating the workforce

• 5.13 Making personalisation happen

• 5.14 Summary of key points

• 6.2 Working together with children

• Getting it right for every child

• The child at the centre

• Changing the culture

with adults

• The citizen at the centre

• 6.4 Working together for children and adults

• 6.5 Working together and self-directed support

• 6.6 Summary of key points from Section 6

• 6.7 Investigative task

• Glossary

• References

• Acknowledgements

Foundations for self-directed support in Scotland

1 Understanding personalisation

and its history

The Social Care (Self-directed Support) (Scotland) Act was

given Royal Assent in January 2013 Its purpose is to ensure that people have more choice and control about the care that they receive

The law about self-directed support has changed because of a

steady shift in policy in Scotland and the rest of the UK towards

greater ‘ personalisation ’ of health and social care services

Understanding the principles of personalisation – and how and why these principles are increasingly recognised as crucial to supporting people – is an essential first step to understanding whatself-directed support is all about

The term ‘personalisation’ has been around for a while: it has been

an implicit theme in the development of social care policy since thestart of the twenty-first century The definition of personalisation provided by the Scottish government in its report

Personalisation: A Shared Understanding is that it:

Enables the individual alone, or in groups, to find the right solution for them and to participate in the delivery of a service From being

a recipient of services citizens can become actively involved in selecting and shaping the services they receive

(Scottish Government, 2009, p 10)

Foundations for self-directed support in Scotland

Figure 1.1 Personalisation enables people to find their own solutions Models used for illustrative purposes only

Personalisation may seem like the obvious way to organise health and social care services; after all, who could argue with the idea that people should determine how their care needs should be met?But in practice the achievement of personalisation has had a rockyroad to climb It involves a major shift in culture: a move from

viewing individuals who use health and social care services ‘ as passive recipients of care to genuine partners in making decisions about the services they need’ (Scottish Parliament Information Centre, 2012, p 4) It is not just about individuals: we need to thinkabout families and communities and about how people are

connected with each other across the whole life course:

individuals to self-direct all aspects of their lives and over the

whole course of their lives within the context of community –

acknowledging the full extent to which services should support people to live lives that are connected and purposeful

(Crosby et al., 2010, p 3)

This section sets personalisation in a historical context This will allow you to see where the ideas of personalisation first came fromand why we have struggled – and continue to struggle – to put them into practice

Foundations for self-directed support in Scotland

Learning outcomes

After studying this section, you should be aware of:

• the origins and development of personalisation in the

UK and Scotland

• some similarities and differences between

personalisation in relation to adults and to children

• some of the tensions that have existed between health

and social care organisations, professionals and

service users over time

• how the principles of personalisation underpin the

policy of self-directed support in Scotland

1.1 Personalisation and you

Whether you use health and care services, are a carer, a parent orpractitioner, you will have your own views about personalisation aswell as ideas and questions The first activity in this section asks you to start to identify what you know – and would like to know – about personalisation

Activity 1.1: Concerns and questions about

personalisation

(20 minutes)

To get you started, begin by viewing a short video about

personalisation It is an excerpt from an Open University panel event in front of a live audience in Dumfries in the south-west of Scotland This panel met with a self-directed support stakeholder group in Dumfries and Galloway in January 2013 Its members give their definition of, and general views about, what

personalisation means to them

Video content is not available in this format

View transcript - Uncaptioned interactive content

Concerns and questions about personalisation

Use your learning log to note down your thoughts and any

questions you have about personalisation and self-directed

support From time to time as you work through the course, come

Foundations for self-directed support in Scotland

back to these concerns or questions to see if your study has

helped to answer your queries

View discussion - Activity 1.1: Concerns and questions about personalisation

1.2 What's in a name?

Figure1.2

People who are supported by health and social care services havebeen given different names by the professions who deliver care In this section you will examine how the names – ‘patient’, ‘client’ and

‘service user’ – are related to the care that people have received and how this links to the concept of personalisation This is not justabout names – it is about the changing society that these names have been embedded in

Activity 1.2: Just words?

(20 minutes)

All of us at one time or another are (or will be) likely to have been described by others as ‘patients’, ‘service users’, ‘consumers’ and maybe ‘clients’ or ‘citizens’ – or to have used these words about other people

• What does each of these terms mean to you?

• The Social Care (Self-directed Support) (Scotland)

Act 2013 refers to the person who directs their own

Foundations for self-directed support in Scotland

support (and parents of under 16 year olds with

support needs) as 'the supported person' What does

this term mean to you?

Use your learning log to record your thoughts You may want to add to your reflections as you work through this course

Figure 1.3 What's in a name?

1.3 Understanding personalisation: the patient

Figure 1.4 Some people view ‘patient’ as a depersonalising and

disempowering term Is that always the case?

We start by looking at what it has meant to be 'a patient'

One of the arguments for personalisation is that, to some extent, categorising people as ‘patients’ has led to people being

depersonalised (Taylor, 1979) That is, people's wishes and

requirements – despite the best intentions of professionals – have sometimes been ignored or dismissed At times patients may be seen first as a body, a disease or a biological process and, only some time after that, as a person (Goodrich and Cornwell, 2008)

From the mid-nineteenth century onwards, hospitals and their organisation have been seen as a major focus of the delivery of health care The status of medical practitioners grew with the

growth of hospitals – at first located in cities and then through offshoots such as ‘cottage hospitals’ in rural areas

Health is not just about hospitals But the way in which hospitals were organised has hugely influenced relationships between

patients and professionals like doctors and nurses While most

Foundations for self-directed support in Scotland

people in the UK value the NHS and the care they receive from thehealth service, one of the reasons that people may have felt (and sometimes still feel) failed by health services is because they are seen as impersonal and even depersonalising One patient talked about feeling like a parcel and a consultant talked of patients as

‘pushed around like a piece of packaging’

With every move, patients and relatives worried that the knowledge about them fell away Arriving in a new

environment, with a new group of staff, they would have

to begin building relationships again from scratch One very elderly patient was moved twice in the same night, once at 2 a.m and then again at 5:30 a.m

She was treated like a parcel The junior doctor on one ward ordered tests but she moved before the results

arrived so they were never received In one of her moves, she was taken by a porter in a wheelchair to the door of one ward The nurse in charge came to the door and

barred the way, telling the porter: ‘You’re not bringing her

in here.’ My mother felt anxious she would be lost inside the system

(Goodrich and Cornwell, 2008, p 10)

Activity 1.3 The experience of being a patient

(30 minutes)

Figure 1.5 Margaret Scally from Lennox Castle

The videos below feature Margaret Scally Margaret was admitted

to Waverley Park Home, an institution established for the care of 'defective and feeble minded children', when she was six years old At the age of 16 she was transferred to a long-stay hospital called Lennox Castle where she lived until the early 1990s She was interviewed about her experiences in Lennox Castle during the 1990s More than ten years later she was interviewed again This helps us to contrast her experience as a patient and as a non-patient, and between being a child and an adult in institutional care

Video content is not available in this format

Margaret Scally interviewed in 1996

View transcript - Margaret Scally interviewed in 1996

Video content is not available in this format

Margaret Scally, interviewed more than ten years later

Foundations for self-directed support in Scotland

View transcript - Margaret Scally, interviewed more than ten years later

View discussion - Activity 1.3 The experience of being a patient

1.4 Understanding personalisation: the client

The late 1960s saw the development of a single, unified profession

of social work, as well as the development of other professions, such as occupational therapy This was related to the post-war determination to combat the ‘five giants’ of want, disease,

ignorance, squalor and idleness that had stalked the UK in the 1930s (Beveridge, 1942) The 1945 Labour government offered solutions to these problems by addressing universal needs for employment, health, education and housing

Activity 1.4 provides an opportunity to consider how the

government of the day sought to address these problems, and the changes we have seen since those post-war days

Activity 1.4 The family and the welfare state in

1945

(15 minutes)

Watch this short film about Sir William Beveridge, an academic, civil servant and Liberal MP who was a key figure in the

development of the post-war welfare state

Make brief notes in your learning log to answer the question:

To what extent do you think this 'vision' of universal services has changed since 1945?

Foundations for self-directed support in Scotland

View discussion - Activity 1.4 The family and the welfare state in 1945

Although the people who shared Beveridge’s vision could see the need for one united service for health care – the NHS – this was not true for social work and social care in the 1940s Other

professions, such as medicine, tended to dominate the services that social workers were part of To challenge this, social workers sought to be professionals in their own right, with a defined

knowledge base and the ‘right’ to prescribe types of intervention related to ‘social' (rather than purely medical) needs, such as

family and community support and an adequacy of income In Scotland, social work was legally established as a unified ‘generic’ profession by the passing of the Social Work (Scotland) Act 1968

By the 1970s 'client' had become the near universal term for

people who used social work services – and is still in widespread use internationally The term 'client' brought with it certain

assumptions:

Within this relationship, the ‘client’ is constructed as someone in need of help, because they lack either the necessary abilities or the capacity to help themselves and thus need the specialist

knowledge and skills of the social worker

(McLaughlin, 2009, p 1103).

Figure 1.6 The term ‘client’ implies a relationship in which someone who needs help draws on the practitioner’s specialist skills and knowlwedge

We now go on to consider the shift from being a ‘client’ to

becoming ‘a service user’ For some people this preoccupation with names might seem a bit abstract and ‘airy-fairy’ – nothing to

do with the real world Yet what we call people is important

because it helps us understand where power might lie in any givenrelationship, and the impact of these relationships on the

experiences of people who access health, social care and other services

Find out more

• ‘ Birth of the welfare state’ (OpenLearn resource)

• The Beveridge vision (OpenLearn free course)

• NHS History timeline

• The Role of the Social Worker in the 21st

Century – A Literature Review

Foundations for self-directed support in Scotland

1.5 Understanding personalisation: the service user

In the 1960s and 1970s, the whole of British society went through

a process of dropping its traditional deference to ‘authority’ of one kind or another There was also growing concern about inequality and the potential for professional power to be wielded in ways that oppressed the very people the professionals were employed to provide a service to

The picture of health care provided to Margaret Scally in the 1980sand early 1990s was not so very different from social care in (for example) older people’s or children's homes in the same era So the term ‘client’, which had once seemed to centre on the essentialand unique worth of each individual, became discredited

Resource constraints contributed to an understanding that clients were not equal in power to social workers or social care providers; unlike the client of a lawyer, they could not ‘sack’ them

Figure 1.7 The civil rights movement of the 1960s and 1970s gave rise to a greater concern with rights for people with disabilities

In the 1970s ‘disabled clients’ – following the example of the civil rights movement against racism in the USA – began to assert disability rights Disability rights groups argued that the problem laywith the way that society responds to people with disabilities: with individual prejudice, institutional discrimination and social

environments that act to exclude rather than include This view

came to be known as the ‘ social model of disability ’, which contrasts with the individual or ‘ medical model ’, which sees

these barriers as relating to the individual and his or her disability

In the UK the Independent Living Movement , which has its roots

in the 1960s US civil rights and consumer movements, led the way

in enabling people with disabilities to move from institutional care

Foundations for self-directed support in Scotland

and towards a model where they, rather than professionals, were making decisions about their care

Activity 1.5: ‘Medical model’ or ‘social model’?

(20 minutes)

The statements below are based on either the ‘medical’ or the

‘social’ model of disability Drag each one into the model that you think the statement most closely represents When you drag one, anew one appears Once you’ve placed each factor, review your selections You can use the ‘Reset’ button to try again When

you’re happy with your selections, use the ‘OK’ button to find out how you did

Interactive content is not available in this format

Use your learning log to record any reflections about your

experiences as a service user and/or provider of how these

models influence health and social care services

Find out more

• Inclusion Scotland

• Discussing disability from the OpenLearn free

course Accessibility of eLearning

• For Scotland's Disabled Children

• Independent Living in Scotland

• Capability Scotland

1.6 Understanding personalisation:

citizens and consumers

In the UK the Disability Rights Movement flourished at the same

time as Margaret Thatcher and the ‘New Right’ took over the

political centre ground, and sought to dismantle the role of the state that Beveridge had proposed The state was to cease being

a provider of services and instead become an ‘enabler’ of service provision The NHS and Community Care Act 1990 crystallised thismove away from state provision and towards an increased role for the private sector These changes have, though, been much less pronounced in Scotland than in other parts of the UK, especially in rural areas where the public sector may be the principal provider ofhealth and social care services

Figure 1.8 Are service users ‘consumers’? Can they buy care and support in the same way as goods in a shop?

Foundations for self-directed support in Scotland

Introducing ‘markets’ into health and social care emphasised

people’s rights as consumers of services It underlines the fact thatthat people with disabilities have the same rights as anyone else who ‘consumes’ any type of service, whether that service is

provided by a high street shop, a local authority or the health

service

Figure 1.9 The concept of citizenship is becoming increasingly influential in Scotland

At the same time there is increasing emphasis on disabled people

as citizens, and on establishing rights based on the social model

of disability For example, in 2000 The Same as You? – the report

of a major review of services for people with learning disabilities in Scotland – stressed the importance of people with learning

disabilities exercising control over their lives, including decision making about their support needs, and having the same

opportunities as other people in society (Scottish Executive, 2000).Increasingly, these rights are also enshrined in laws such as the Human Rights Act 1998 and the Equality Act 2010, and the

principles of Scottish statutes such as Adults with Incapacity

Rights for young people at risk of abuse or neglect, underpinned

by the United Nations Convention of the Rights of the Child

(UNCRC)

However, consumers’ and citizens’ rights are not the same The first establishes a private relationship between the consumer and the producer of a service The state is at least at one

remove from the consumer If there is something wrong with

something that you buy, it is the consumer who must battle with thefirm that provides the service to redress wrongs But are patients

or clients really ‘consumers’? Can they buy goods and services for their own use as they choose? The answer is no, because the services on offer depend largely on the assessment of need made

by health and social work professionals Meanwhile, professionals’ choice is often constrained by budgets allocated to each service

Citizenship, on the other hand, establishes a relationship between

the citizen and the state A focus on citizens’ rights leads to a

focus on what the state ought to provide to its citizens as a matter

of entitlement If there is a breach of this kind of entitlement then redress comes from political engagement with local councillors, members of parliament and the ballot box – democracy in action

In Scotland, although a ‘consumer model of citizenship cut very little ice’ (Law, 2006, p 62), the concept of citizenship – both in terms of rights and of responsibilities of citizens within

communities – has become increasingly influential This focus on citizenship is evident in the language of education as well as

Foundations for self-directed support in Scotland

seen as a key aspect of the Curriculum for Excellence in Scottish schools:

Young people are citizens of today, not citizens in waiting

Education for citizenship is about developing in learners the ability

to take up their place in society as responsible, successful,

effective and confident citizens both now and in the future

(Education Scotland, 2013)

Citizen leadership

Figure 1.10 Can we all be regarded as citizen leaders?

‘ Citizen leadership ’ is a good example of how language can help

to change our understanding of people’s capabilities, and their relationships with professionals and services The User and Carer Panel of Changing Lives has said that citizen leadership is

fundamental to bringing about much needed changes in social services in Scotland They said:

Citizen leadership is an activity it is what happens when

individuals have some control over their own services It is also what happens when citizens take action for the benefit of other

This illustrates how two words – ‘citizen’ and ‘leader’ – can

together convey a quite different message from referring, for

example, to a ‘patient’ or a ‘service user’ Citizen leaders have rights and responsibilities in their communities, and can influence others and make things happen You will have more opportunities

to explore citizen leadership later in this section and in other parts

of this course

Find out more

• The Same as You?

• Citizen leadership

• Children's Charter

• Andrew Lockyer: ‘Taking children's citizenship

seriously’ (podcast)

Foundations for self-directed support in Scotland

1.7 Understanding personalisation:

where next?

The term ‘service user’ more or less replaced ‘client’ in social work and social care by the first decade of the twenty-first century It is also a term sometimes used by health care professionals to

replace the term ‘patient’, although one might well argue that a

‘service user’ in principle is no less or more passive than a ‘client’

or a ‘patient’

Some people are still unsatisfied with the term ‘service user’ – partly because it doesn’t tell us what service users ought to be or

to do, except be users of services People who ‘use’ services

have plenty of other roles too – as parents, pupils, employees, clubmembers and neighbours, for example And where does this

definition leave people with disabilities who are unable (or choose not to) access services? Or people who are unwilling ‘service

users’ – that is, people who are detained in hospital or children subject to compulsory supervision orders because they are

considered to be at risk of harm?

So, just as the term ‘client’ once obscured reality in one way, the term ‘service user’ might obscure reality in a different way

Nevertheless, ‘service user’ is the term that is now currently in use and will be used, alongside 'citizen', in this course to describe people who were previously or may still be described as ‘clients’ or

‘patients’ of health and social care services

again as personalisation – and, as an expression of this,

self-directed support – becomes an increasingly influential force in

Scotland We will begin to explore how personalisation and directed support may well soon be making us think again about thelanguage that we use, but first take this opportunity to review your reflections about ‘what’s in a name?’

self-Activity 1.6: What's in a name? Sara and her family

(25 minutes)

Now that you have had an opportunity to explore some important changes in the context for health and social care in Scotland and the rest of the UK, let's return to Sara and her family who you met

in the introduction

Foundations for self-directed support in Scotland

As you have seen, different terms – patient, client, service user, consumer, citizen – have different meanings to different people The use of particular words can change the way people are seen

by others and themselves Using your learning log answer the following questions:

• How might each term highlight or conceal different

aspects of the needs of each family member?

• Do you have a preference about what you would like

to be called? Why?

View discussion - Activity 1.6: What's in a name? Sara and her family

1.8 Personalisation: Children's and

adult's rights

You have seen that the roots of the personalisation movement lie

in the independent living movement of the 1970s, and the

emergence of an increasingly influential social model of disability Personalisation may come in many forms but at its heart are core values: promoting people's independence; enabling participation; empowering people to make their own choices and being in control

of their daily lives (Chetty et al., 2012) These values are evident inthe principles of The Social Care (Self-directed Support) (Scotland)Act 2013:

Figure 1.13 The Social Care (Self-directed Support) (Scotland) Act 2013 is underpinned by the values of personalisation

Central to these principles is the notion that citizens have rights In

1948 The Universal Declaration of Human Rights stated that rights are based on:

Foundations for self-directed support in Scotland

recognition of the inherent dignity and the equal and inalienable rights of all members of the human family human beings are born free and equal in dignity and rights

Figure 1.14 Wanting to preserve the liberties fought for in World War II,

Churchill laid the foundation for the 1948 Universal Declaration of Human Rights

View description - Figure 1.14 Wanting to preserve the liberties fought for in World War II, Churchill

An important landmark in the history of rights in the UK was the passing of the Human Rights Act 1998 which, with the Scotland