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Reakgona Book REAKGONA* WE MAKE IT! WE ARE ABLE! WE MANAGE! WORKING WITH SEVERELY DISABLED CHILDREN BY UNDINE RAUTER Lessons and history of the Parents’ Guidance Centres, South Africa * Pronounced Re-a-krona, the Setswana word means “We make it! We are able! We manage!” Published by Enablement Publishers Published by Enablement Publishers A. van Leeuwenhoekweg 38 A16, Alphen aan den Rijn, The Netherlands. April 2016 ISBN 9789081672504 Copies can be requested/ordered at: [email protected] or [email protected] Parents’ Guidance Centre Reakgona P.O. Box 77, Radithuso 2738 tel: +27-18-3369258 This book was the work of Undine Rauter, assisted by Huib Cornielje, Niala Maharaj and Marije Cornielje 2 REAKGONA We make it! We are able! We manage! “The PGC promotes close relationships, bonding and love between mother and child.” Joe Menoe, Community Worker/Chief Physiotherapy Assistant, Tswaing sub district “As a paediatric doctor I appreciate the knowledge and good observation skills the PGC mothers have obtained. It is much easier to care for a sick disabled child with an informed, caring mother helping me to understand the child.” Dr. Amelia Thambe, Registrar in Paediatics, Pretoria “The PGC instils a positive spirit of hope and a healthy confidence in the child. They make them feel genuinely accepted and loved.” Jackie Matlala, Mother of a young adult with CP “For youth the PGC is focussing on career building and discipline, responding to challenges among young people concerning HIV/ AIDS and drug abuse.” Allen Mtatase, Chairman, GBT Mongoose Wheelchair Basketball “The PGC makes my life easy and impacted my life by giving me a motorized wheelchair. This enables me to do things for myself. I am so thankful for that.” Thabo Mofokeng (17),Youth with Muscular Dystrophy “Without a place where we can repair and modify our wheelchairs we would be stranded.” Semakaleng Thekiso, Mother of a child with spina bifida “The PGC makes a significant contribution towards the empowerment of youth with disabilities and parents of children with disabilities which in turn can improve the quality of life of the children, youth and parents.” Sarah Rule, CEO CREATE (CBR Education and Training for Empowerment) “The PGC taught us how to work with different disabled children. It promotes a safe environment for children with disability, and teaches us how to provide this place.” Lasita Tong, Project manager, Obakeng Disability Organization We make it! We are able! We manage! REAKGONA 3 Gratitude I am deeply indebted to Huib Cornielje, the founder of the Parents’ Guidance Centre Reakgona, who encouraged and assisted me to write this book, and to Niala Maharaj, who patiently shaped the raw material into the text we have today. Thank you also to Marije Cornielje, whose critical questions helped clarify content related matters. Last but not least I thank the Liliane Foundation for the trust they put into this work by funding it and all those who contributed towards the content and layout of this book. I hope by sharing our experience children and young people with disability benefit from thoughtful services. Ke lebogile go menagane! Le kamoso! Undine Mmatumelo Rauter 4 REAKGONA We make it! We are able! We manage! Contents Introduction 7 Why this book? 9 Acronyms 12 Preface 17 Meet the people 18 Part One: The story of the PGC 23 Chapter one: Origins 25 Chapter two: Collision with reality 27 Chapter three: Starting in chaos 29 Chapter four: Back to the community 31 Chapter five: Self help projects spontaneously speed up 35 Chapter six: Consolidation 39 Chapter seven: Expansion 43 Chapter eight: Empowerment 49 Part Two: Essential elements of the PGC approach 61 Chapter nine: Supporting families the key 62 Chapter ten: Concepts and programs 78 Chapter eleven: Enabling people and projects 89 Chapter twelve: Management 103 Chapter thirteen: Creative application of the PGC model 109 Chapter fourteen: The cultural context 118 Epilogue: Invitation into the land of the disabled 125 References and recommended further reading 127 We make it! We are able! We manage! REAKGONA 5 6 REAKGONA We make it! We are able! We manage! Introduction By Huib Cornielje Director Enablement This book presents a model for the care and rehabilitation focus on psychological, as well as physical, rehabilitation and of severely disabled children and youngsters, and particu- support, not only for the disabled children and youngsters larly those living in less wealthy countries. It was developed themselves, but also for their families, caregivers and commu- over the past 30 years at the Parents’ Guidance Centre, at nities. Gelukspan Hospital in rural South Africa. I myself initiated the project, but it has been extensively developed and expanded We have learnt a great deal in the explorations we conduct- by Undine Rauter over the past 20 years. The eectiveness ed in developing the approach. The second part of the book and applicability of this approach is evident in its spontaneous oers a guide to essential elements of the approach. Some growth and expansion, particularly into providing training and of our discoveries as to what is particularly e¡cacious and support for community-driven, self-help initiatives in a wide arc important are surprising, so we feel it necessary to oer these surrounding its location. to other practitioners in this field. Because the model was developed in response to real needs We sincerely hope that this publication will lead to changes and circumstances, we feel readers need to see why and in the way disabled people are helped in various parts of the how its various aspects came into being. Undine Rauter has world and urge readers to bring it to the attention of those therefore set down a history of the Parents’ Guidance Centre. with the authority to make those changes. This is presented in part one of this book. This history also introduces the philosophies that underlie the model, with their Thank you for reading further. We make it! We are able! We manage! REAKGONA 7 John, Lessley und Dineo on their prone trolleys to heal pressure sores. 8 REAKGONA We make it! We are able! We manage! Why this book? By Kees van den Broek Director, Liliane Foundation We at the Liliane Foundation are in awe at the organic devel- • Oering large numbers of children with similar challenges opment of the Parents’ Guidance Centre in South Africa, and the rehabilitation that they need may not be possible on an at the simple, common sense, yet imaginative concepts it is individual basis (because of distance, costs, number of pro- built on. We believe professionals, organizations and health fessionals available). This is especially true for low-income ministries should examine this model since it has tremendous countries where resources, and especially rehabilitation potential for transforming the approach to the rehabilitation of services, are scarce. In such situations, the Parents’ Guid- disabled people, especially children, and particularly in less ance Centre model can be an eective and e¡cient way of wealthy societies. oering necessary services to this group of children. • The training oered at Parents’ Guidance Centres - if han- Main benefits dled in the right way - can be very empowering to parents The model is both eective and cost-eective, and it gener- and their disabled children. It is not only the child who ben- ates gains to communities and parents apart from improving efits but also the parents, who become more secure in what the lives of disabled children. Its main benefits are listed they know and do, and have the right tools and insights below. to help their child develop, gain confidence and have an • This approach to rehabilitation places a strong focus on improved quality of life. the role of parents in the development of their disabled chil- • It is a model that creates a strong link between the spe- dren. It strengthens family bonds at a time when these are cialised therapy provided in hospitals and/or rehabilitation under pressure from diverse social developments. centres and more community based approaches. • It facilitates - at times strong - bonding amongst parents • Parents’ Guidance Centres may lead to the development of who start realising that they are not the only ones con- parents’ self-help groups. Nowadays, there is great interest fronted with the challenges of having a severely disabled in such groups, which act as: child. This peer support should not be underestimated; - peer support groups; the learning from and with each other has proven to be - groups with a therapeutic focus; very valuable. The tips and tricks - sometimes very simple - groups that decide to start forms of day-care provided and straightforward - provided by trained sta as well as by members on a rotational basis. This allows the moth- exchanged between parents are of great benefit. ers or caregivers to become ‘free’ from the care for their We make it! We are able! We manage! REAKGONA 9 children for a couple of days a week and they can use groups are a powerful tool to change the mind-set of those the time for other activities such as working in the fields, around them and to achieve inclusive communities. going to the market or enjoying some rest and relaxa- tion; We are grateful to the originator of the Parents’ Guidance - groups focusing on income generating activities and Centre, Huib Cornielje, and to its long-standing director, savings- and credit schemes in combination with day Undine Rauter, for giving us the opportunity to present this care. model to the world. The Liliane Foundation wholeheartedly • Last but not least, the Parents’ Guidance Centres largely recommends this book to health authorities and rehabilitation contribute to the empowerment of parents and, through practitioners throughout the world.
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