Family Friendly! Working with deaf children and their communities worldwide Deaf Child Worldwide (formerly the International Deaf Children’s Society) is the only UK based international development agency dedicated to enabling deaf children to overcome poverty and isolation. Our vision is a world without barriers for every deaf child. We believe that: • Every deaf child has the right to the same opportunities as a hearing child • Every deaf child has the right to be included and valued by society • Families have the right to make informed choices on behalf of their deaf child and for those choices to be implemented • Families have the right to clear and balanced information and support, delivered in a way that is accessible to them We work with partners in the countries where need is greatest throughout the world. We are the international development agency of the National Deaf Children’s Society in the UK. Registered Charity: 1016532. Copyright of this document is the property of Deaf Child Worldwide. Deaf Child Worldwide encourages others to copy, reproduce or adapt any or all parts of this book, provided that the parts are reproduced free or at cost and Deaf Child Worldwide is identified as the source. Please contact Deaf Child Worldwide for permission if you are interested in translating any section of the book or if you would like to reproduce this book for commercial purposes. Written By: Kirsty Wilson, Susie Miles and Ian Kaplan. First published: February 2008. Cover photograph: Loto Taumafai Society, Samoa. The illustrations on pages 9, 22, 42, 64 and 118 are by Heidi Broner and were published in the book Helping Children who are Deaf (The Hesperian Foundation 2004) Deaf Child Worldwide would like to thank all the contributors to this booklet and in particular, the Enabling Education Network, www.eenet.org.uk for their contribution to the writing and editing of this book. EENET is an information sharing network which promotes the inclusion of marginalised groups in education worldwide. Its membership is open to all. Contact [email protected] for more information. About this book This book aims to raise awareness of the important role that parents and families can play in the lives of their deaf children and in their communities. It is written for all those who want to know more about parental involvement in support for deaf children, but especially those who are involved in providing services for deaf children and their families. It is not always easy for service-providing organisations to involve family members in their work, or in self-help activities. Often parents feel that they know too little in comparison to professionals, that they are too poor, that the distances to travel are too far or that they have little to contribute. However the inspirational case studies presented here show that it is possible for service providers, families and deaf people to work together to support deaf children. The examples in this book show that families can be one of the most powerful forces for change in the lives of deaf children. They can change the lives of their own children and also work to change the future for many others. Different people - both deaf and not deaf, parents and practitioners - have contributed to the book and we are very grateful for their willingness to take time in contributing to our project. This book represents some of the core values of Deaf Child Worldwide and many important learning points from the work of our partners and friends. We have found producing this book inspiring and we hope that it inspires you, too! Family Friendly! Working with deaf children and their communities worldwide 1 Using this book This book presents the experiences of others through case studies. It uses some principles from Action Learning to encourage readers to think about their own practice and to challenge themselves to act upon what they learn as a result. Action Learning Guide Use case studies to Consider documenting or find out about discussing your experiences other experiences of action – so that others Read can read them and begin the cycle again! How will reading Reflect on the this book affect experiences in your work? the case study in relation to your Act This is up to you! Think own situation What lessons can be learnt from the experiences? How do you respond to the Learn author’s learning? Each stage of the cycle uses these symbols. In each chapter, you will find: Case studies written by practitioners or family members. You can find all the case studies in full on our website – www.deafchildworldwide.info . If you don’t have access to the internet, please write to us and we would be happy to send the Read case studies to you. The case studies come from many countries, in which families have followed a range of different approaches for their children. On the whole, there are fewer case studies written about children with mild or moderate deafness or about those who became deaf later in their childhood. However, as this book is about strategies for 2 Family Friendly! Working with deaf children and their communities worldwide Continued informing and empowering families, we hope that the examples will be relevant to all families with deaf children who have different levels of hearing loss. On page 144, there is an index of all the people who contributed to the book and the page numbers where their contributions can be found. Some of the case studies have been published previously and the full references for those published stories are available after this index. Things to think about… Taking time to reflect on your own practice can be very productive. The case studies may help you to see your own work situation differently. Some people call this “making the familiar unfamiliar”. The questions in these “think” boxes are designed to Think help you to reflect on your own work. They may help you to reflect on what is going well in your project. They may also help you to think creatively about changes that could be made. The questions can be used with individuals, with a team of colleagues, or with larger groups in workshops. Learning from… The book does not propose a set approach to common challenges. Instead, it invites you to learn from the experiences of others and Learn apply that learning to your own situation. There is a summary of some of the learning at the end of each chapter and after some case studies. These are ideas which the authors of the book have picked out. You might find different aspects of the case studies important. Please contribute to the debate – tell us what you think some of the learning points are – we could publish your comments on the website or, perhaps, in future editions of the book. Basic principles for Deaf Child Worldwide On some issues, Deaf Child Worldwide uses these principles to guide its work. These may be useful for practitioners to consider in relation to their own work. These principles are, like everything else, open to critique, different interpretations, additions and amendments. Please let us know what you think. Family Friendly! Working with deaf children and their communities worldwide 3 Using this book Some notes on terminology used Deaf Child Worldwide uses the term “deaf” to refer to all levels of permanent hearing loss. This includes mild, moderate and profound hearing loss. This includes people who use sign languages and spoken languages as their preferred language. It is important to note that children with different levels and types of hearing loss require different support. As this book contains case studies written by people who do not work for Deaf Child Worldwide, you will notice that some authors use Deaf (upper case D) when specifically referring to the group of people who identify themselves as culturally and linguistically members of the Deaf community. Deaf Child Worldwide refers to “parents” as the person or people who take responsibility for caring for a deaf child. Where possible, Deaf Child Worldwide refers to deaf children and their “families” to show that there are a wide variety of people who are involved in the deaf child’s life, for example grandparents, siblings, step-parents, aunts and uncles. 4 Family Friendly! Working with deaf children and their communities worldwide Contents About this book 2 Using this book 2 The importance of families 7 1 Why focus on families? 8 Families and language learning 9 Families and access to services 10 What is “parent empowerment”? 13 What are deaf children’s rights? 14 Deafness is a community issue 15 Family friendly services for deaf children 17 Learning from this chapter 19 Providing Positive Information 21 2 Why is information so important? 22 What kind of information is useful to families? 24 Making information useful 27 Positive information in practice 29 Learning from this chapter 39 Family groups and associations 41 3 Why come together? 42 Supporting parents to come together 43 Inviting parents to a group 43 A reason to meet 46 Becoming more sustainable 51 Moving from professional-led to parent-led groups 54 Parent-initiated groups 57 Resources for parents’ groups and associations 59 Learning from this chapter 61 Working together with deaf adults 63 4 Deaf role models 64 Deaf people are all different! 68 Deaf people as sign language trainers 70 Deaf people as advocates 73 Becoming a deaf friendly team 75 Learning from this chapter 79 Family Friendly! Working with deaf children and their communities worldwide 5 Contents Community based support 81 5 What is community based support? 82 Why families