Disabled Children and the Law

Research and Good Practice Second Edition

Janet Read, Luke Clements, David Ruebain

• Publisher: Jessica Kingsley Publishers
• Year: 2006
• Print ISBN: 9781843102809
• eBook ISBN: 9781846424885
• Edition: 2
• Topic: Law
• Subtopic: Family Law
• Index: Law

Now in its completely updated second edition, this accessible guide provides essential information about how the law can be used to promote good practice and policy development for disabled children and young people.

The authors take an anti-discriminatory and inclusive approach that involves parents and children in decision-making and advocacy. They summarise recent research on common needs and problems of disabled children, young adults and their families, and what support services are valued by them. Individual chapters cover issues affecting children at different stages in the lifecourse, including receiving diagnosis, ensuring educational and social inclusion, and establishing autonomy and independence in early adulthood. The overlapping legal responsibilities of social services, health and education are explained and changes arising from the Children Act 2004 are highlighted.

Disabled Children and the Law is an essential reference for practitioners, policy makers, students and families.

CHAPTER 1

Introduction

What is this book about?

There are three basic principles underpinning this book:

•Disabled children and their families have a right to a quality of life comparable to that enjoyed by others who do not live with disability.

•If we are to ensure that the rights of disabled children and their families are protected and promoted, then it is essential to have an integrated approach to research, good practice and the law.

•The law should be seen as a tool that can be used to help achieve practice that research indicates is valued and meets important needs.

Accordingly, throughout the book, the three elements of research, good practice and the law are considered along a continuum, in the following order:

•What research has to tell us about the needs of disabled children and those close to them.

•What research has to tell us about valued services to meet those needs and how this is reflected in current policy and practice.

•How the law can be used as a tool to make valued and appropriate services available to meet need.

In other words, in relation to different topics, we start with the issues that research tells us are significant for the children and those close to them; we move on to strategies that may make a difference; and then we consider how the law might help. Wherever possible, we use the best research evidence available. It is important to recognise, however, that some significant areas of disabled children’s lives remain under-researched. In addition, we also draw on literature that may not have an empirical research base but that has offered important theoretical insights or new perspectives that have helped us to appreciate the lives of disabled children and those close to them.

Who is this book for?

Disabled children and young people and those close to them often lack essential information about matters that substantially affect their lives. We hope that this book helps to tackle this problem. It is written with disabled young people and their families in mind, and we hope that some may have direct access to it and find that it contains material that is useful to them. After the publication of the first edition of Disabled Children and the Law: Research and Good Practice, we were delighted with the numbers of families who told us that they had read the book and found it useful. We realise, however, that others may find that the various handbooks and websites that we recommend are much more to their liking than a research-based text. In addition, we hope that the book will be of value to organisations, lawyers, advisors and advocates assisting disabled children and their families or representing their interests. In this way, the children and their families may benefit indirectly from the information that we have provided.

This book is also aimed at practitioners and managers providing and planning services for disabled children and their families, and at students training for the relevant professions. In recent years, there has been a growing expectation that the best available research evidence should inform practice and service development. It can prove very difficult, however, for even the most conscientious of practitioners to keep abreast of current research. Similarly, there is evidence that some practitioners and managers find aspects of the law related to disabled children complex and demanding (Read and Clements 1999). This book is intended to give service providers access both to a substantial range of research and to related legislation.

How this book is organised

There is no easy way to lay out a book of this nature. A law book would deal with each statute in succession and a practice book might deal with the duties of each public authority separately (i.e. social services, education, the National Health Service (NHS), and so on). Since we challenge the inappropriate compartmentalisation of issues that arise in the lives of disabled children, we have not favoured either arrangement. We have opted instead (after trying many alternatives) for a layout based primarily on important stages in a child’s lifecourse.

Such an approach has caused slight difficulty with this new edition, as we seek to highlight and incorporate the legal changes arising from the Children Act 2004. In our opinion, however, the Act’s impact is not likely to be so fundamental as to require a change to the book’s overall structure. We address the key changes of the 2004 Act in Chapter 4.

The book is organised in two parts: Part I is the main body of the text on research, good practice and the law. Part II contains more detailed legal source materials and precedent letters.

In Part I, following this introduction, there is a chapter on human rights, ethics and values. Chapters 3 and 4 provide an overview of research, policy, practice and the law in relation to all disabled children and their families. These chapters form an essential background and are intended to be read in conjunction with others on specific topics. Chapters 5 to 7 follow the children’s lifecourse and deal with issues that routinely become important for them and their families at particular times. Finally, Chapter 8 focuses on children who live away from their families. Each of these chapters is divided into two parts: the first part consists of a review of research and policy in relation to need and services and the second part comprises a legal commentary on those findings. The sources cited in the sections concerned with research and good practice are to be found in the list of references at the end of the book. Following the convention in law publications, the references for the legal commentaries are to be found as endnotes at the end of a particular commentary.

Taking this approach to the three elements, research, good practice and the law, has undoubtedly created considerable problems of organisation. In relation to any topic, we have had to draw on a range of research and legislation, appreciating, however, that most people will not read this book from cover to cover. We have, therefore, tried to find a way of giving readers the best possible access to material that they may need without either being too repetitive or risking a serious omission. Some issues, for example the need for an effective means of communication for each disabled child, could have been explored in almost every section. Choices had to be made, however, and some matters are dealt with in a particular chapter, not because they belong there exclusively but because, on balance, that seems the most appropriate place for them to be. We have tried to help the reader by providing extensive cross-referencing and a detailed index.

Note

Although this book is concerned throughout with the safety and well-being of disabled children, it does not deal specifically with procedures in relation to child protection. Similarly, it does not offer information and advice on income maintenance benefits. Reference is made, however, to texts and guides on these topics.

PART I

Research, the Law and Good Practice

CHAPTER 2

Human Rights, Ethics and Values

Introduction

In this chapter, we outline briefly some of the values that underpin our approach. These principles and related theoretical work appear in one form or another throughout this book, but the aim of this chapter is to make them explicit.

Quality of life and human rights

Our approach is founded on a very simple assumption. We believe that it should not be regarded as an exotic idea for disabled children and those close to them to aspire to a quality of life comparable to that enjoyed by others who do not live with disability. In our view, it should be seen as unacceptable in the twenty-first century for the lives and experiences of disabled children and their families to be bereft of those features that many others take for granted, features that make an essential contribution to an ordinary and reasonable quality of life. This is not, of course, the same as saying that all children, disabled or not, need or want exactly the same personal, social and material experiences in exactly the same form. What we are suggesting is that we should aim for basic equality of opportunity and recognise that children and their families will take very different routes and need markedly different supports if there is to be any chance of achieving it.

We should, therefore, never start from the assumption that an experience that is taken for granted by many non-disabled children and their families should be ruled out on the grounds of a child being disabled. By contrast, if we start by assuming that disabled children and their families should have access to experiences that others routinely expect, then the issue becomes one of finding the route to achieve it and the services that will enable it to happen. To assume that disabled children and their families have the same basic social and human rights as other people is fundamental.

This idea is not new. Increasingly, researchers and disability activists have highlighted situations and experiences that are often fundamental to the lives of disabled children and their families but that would be regarded as intolerable for those who are non-disabled (e.g. Hirst and Baldwin 1994; Morris 1995). They have pointed to differential standards that apply to the two groups and to the size of the gap between them. Since the 1990s, we have seen increasing challenges to the notion that it is acceptable for such a gap to exist between the expectations and experiences of disabled and non-disabled children and young people. Russell (2003, p.216) draws our attention to ‘a compelling body of evidence from research and inspection reports that many disabled children and their families continue to face multiple discrimination, low expectations and many physical and social barriers to full participation in society’.

Our experience as both researchers and practitioners has taught us that although children and their families may have to compromise as they focus their attention on managing the day-to-day rigours of life, many retain a sense of injustice or disquiet about the gap that exists between their own quality of life and that of others who do not live with disability. We cannot be the only people who have been asked by disabled children how we think that others of their age would like it if they had to put up with things that are integral to the experience of growing up with disability. Parents of disabled children whom we know also frequently draw an implied or explicit comparison between their own children’s lives and the lives of others. When faced with a battle to get something that they feel would improve their disabled child’s quality of life, they often challenge what they regard as taken-for-granted restrictions and low standards. In doing so, they sometimes use the language of fairness and unfairness and pose questions such as ‘Why shouldn’t she have what other children have?’

Some of the questions asked by disabled children and young people and their parents should not be assumed to be simply rhetorical. When we attempt seriously to answer questions that begin ‘How would they like it if…?’ or ‘Why shouldn’t she have the same…?’, the unacceptable quality of the opportunities afforded to many disabled children and their families is brought home to us. If, for example, we were to come to the conclusion that it would be unbearable and damaging for a non-disabled child to be without a means of communication or a consistent way of expressing preference or dissent, then we immediately have to ask why it is routinely regarded as acceptable for many disabled children to be in that position. Furthermore, if the answer is a resounding ‘No’ to a question about whether some aspect of the quality of life experienced by disabled children would be good enough for non-disabled children, we need then to interrogate why it should be contemplated. The onus must be on having to explain and to justify it.

One group of practitioners known to the authors used a rough and ready but effective yardstick in relation to these issues. The team undertook a review of services offered to disabled children with complex support needs with the aim of exte...

Table of contents

• Cover Page
• Title Page
• Copyright
• Contents
• Acknowledgements
• Chapter 1: Introduction
• Part I: Research, the Law and Good Practice
• Part II: Resource Materials
• References
• Subject Index
• Index of Legislation and Guidance
• Author Index