Start Small Grow Slow Make a Difference

By Maha Juffali-Ghandour

In the 1980s, children with intellectual disabilities needed special services that were unavailable in either hospitals or regular school settings. Mainstreaming and inclusion were still ideas of the future. To address this matter, the Help Center was established in 1985. It is the first private philanthropic nonprofit organization in the Kingdom of Saudi Arabia dedicated to the welfare of people with intellectual disabilities, from as early as birth to young adulthood and beyond.
In Start Small, Grow Slow, Make a Difference, author Maha Juffali- Ghandour offers a guide detailing how the nonprofit center was started, how it functions, and the lessons learned during thirty years of service. From its early days, the Help Center served just three clients and now assists 350 students. Through a holistic approach, providing a range of both educational and therapeutic services to the children and their families, the center empowers them to become active, vocal, and productive members of the community.
More than a history of a single organization, Start Small, Grow Slow, Make a Difference offers tips and guidance for those who seek to open and operate a similar philanthropic nonprofit of their own. Al-Juffali discusses the three essential building blocks to ensure a solid foundation designed to achieve any vision: start, grow, and learn.

• Language: English
• Publisher: Partridge Publishing Singapore
• Release date: Aug 29, 2015
• ISBN: 9781482852707

Maha Juffali-Ghandour

Maha Juffali- Ghandour earned a PhD in health management. She is the founder, director, and supervising trustee of the Help Center, a family-owned NGO for children and adults with intellectual disabilities in Saudi Arabia established in 1985. Juffali also serves on boards within the educational, medical, and social sector locally and internationally.

Book preview

Copyright © 2015 Maha Juffali- Ghandour. All rights reserved.

Library of Congress Control Number: 2015949946

ISBN

978-1-4828-5269-1 (sc)

978-1-4828-5270-7 (e)

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the author except in the case of brief quotations embodied in critical articles and reviews.

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

08/28/2015

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Contents

Acknowledgment

Dedication

Introduction

About This Book

Chapter 1: Start Small, Think Big

Chapter 2: Mission Statements

Chapter 3: Families

Chapter 4: Therapeutic Services

Chapter 5: Education

Chapter 6: Support System

Chapter 7: Finance

Chapter 8: Adults

Acknowledgment

I owe my gratitude to all those who have made this book possible. The Help Center’s 5000 families, the faculty, the staff, the advisors, the friends, and my own family.

It is due to their faith in my ability, and their encouragement to pursue our endeavor, that I was able to rise to the occasion and do the work necessary to complete this book.

To Mr. Gallagher, I am truly grateful for his encouragement and practical advice.

Many friends have helped me stay sane through these challenging years. Their support and care helped me overcome the setbacks and stay focused on my work. I greatly value their friendship and I deeply appreciate their belief in me.

Most importantly, none of this would have been possible without the love and patience of my family. I owe my greatest gratitude to Ali, Daniah and Rafic for believing in me, supporting me and, above all, listening and encouraging me patiently. My mother who gave me the courage to step up to the challenge and pursue my hidden dream, I am in debt to her forever.

Last but not least, my late beloved father Ahmed Juffali, who believed in my ability to learn and improve, so that now, 20 years on, I still feel the strength of his confidence in me running through my veins. Without his vision none of my work would have been possible.

Dedication

I dedicate this book to all of those who are making a difference in the lives of persons

with Intellectual disabilities.

Introduction

This is a book about our journey. Well, our journey so far. It’s a guide to how we started, how we function, the lessons we’ve learned, and some of the things in between. You may be reading it because you are in some way connected with the work we do at the Help Center and are curious to know a bit more, or perhaps you have picked it up by chance and know nothing at all about us. It is our hope that some of you reading this will be thinking about joining or creating a facility similar to the Help Center, or perhaps you are a university student looking at a career in special-needs education. It may just be a seed of thought at the moment, or maybe you already have the ball rolling. Wherever you are with it, this book can help, and we hope it will also engage and inform, educate and inspire.

It has been said that an expert is a person who has made all the mistakes that can be made in a very narrow field. After thirty years, going from a small unit and three clients to the Help Center facility and 350 students, we have learned some valuable lessons along the way that we want to share, and that’s what this book is all about. We want to show you how we got to where we are now. We’ll tell you the things that work and how we do them, the things that didn’t work for us, and those we found worked after a few attempts and were worth plugging away at. What we have now is quite a polished organization that has ironed out a lot of problems over the years. From our beginning and during the first decade of operation, we did a lot of research and visited many centers around the world. The knowledge we received from experts around the world proved invaluable for developing into the center we have today. This book is our chance to continue that circle of knowledge.

Starting a nonprofit facility that provides services to children with intellectual disabilities and their families can be a very daunting task. When you have finished this book, you will have a much clearer idea of what you need to do to make your ideas a reality and how all sections of such a facility can function most efficiently and effectively.

We are passionate about improving the lives of, and increasing the opportunities for, children with intellectual disabilities. Our vision of a society that is accepting and accommodating of those with intellectual disabilities can only be achieved by a society that provides them with greater opportunities. Hopefully this book will help those who hold the same vision create these chances for many other children.

We wish you the best of luck.

The Help Center

About This Book

Okay, so we’ve given you some idea about what you can expect from this book and how we hope it will help you. Now we want to tell you a bit more about exactly what you can expect from each chapter. Getting a health and education facility for children with intellectual disabilities up and running successfully can at times be very difficult. We won’t sugarcoat the difficulties, so in every chapter, alongside our successes and how they have been achieved, you will see some of the problems we have faced and how they have been dealt with. The book is organized into eight chapters:

Chapter 1: Start Small, Think Big

Everything else in this book will make a lot more sense if you first get a better idea of who we are and what we do. This chapter will tell you how we started, how we grew, and where we are now, with all our notable moments in between.

Chapter 2: Mission Statements

It is commonly accepted by both academics and practitioners that mission and vision statements are very useful tools for providing a nonprofit organization with focus and direction. This section provides information on how to draw up both statements, what kind of information you want to put in them, and how best to get staff invested in them.

Chapter 3: Families

The Help Center has grown in response to the requests and needs of the parents of the children it caters to. Forming strong relationships with them will help keep you grounded and mindful of what you need to be doing. In this section we look at the importance of families to the Help Center and detail the services we provide for them.

Chapter 4: Therapeutic Services

Starting with the early-intervention department, the Help Center provides a range of therapeutic services to its students, including social services, psychology, speech and audiology therapy, physical and occupational therapy and nursing,,. Here you will learn the ins and outs of each of our therapeutic departments as we explain what they do, how they function, and more.

Chapter 5: Education

Education is the key to independence and is vital when it comes to helping our students achieve their full potentials. Split into various sections for different age groups, the Help Center’s education department is multifaceted. This chapter will provide you with insight into each section of the department, as well as the role of the education director.

Chapter 6: Support System

As the oil for the wheels, the support system at a nonprofit is vital to its functioning. This chapter explores each of the teams providing support to the therapeutic and educational departments, including the board of trustees, human resources, public relations, Information and technology, and facility services.

Chapter 7: Finance

Finance provides the backbone to a facility, as nothing gets done without available funds. It’s a complex issue, but this chapter will give you an insight into some of the key aspects of financial management, as well as detailing some of the issues we’ve had and how they have been handled.

Chapter 8: Adults

Deciding to branch out and provide recreational services and employment advice to graduates was a big move for the Help Center. In this section we will reveal all we have learned from our experiences in establishing our graduate center, Dirat Ajdadi.

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Chapter 1: Start Small, Think Big

Maybe it’s my fault. Maybe I led you to believe it was easy when it wasn’t. Maybe I made you think my highlights started at the free throw line and not in the gym… Maybe it’s my fault that you didn’t see that failure gave me strength, that my pain was my motivation.

—Michael Jordan

The Help Center is the first private philanthropic nonprofit organization in the Kingdom of Saudi Arabia dedicated to the welfare of people with intellectual disabilities, from as early as birth to young adulthood and beyond. Through a holistic approach, providing a range of both educational and therapeutic services to the children we work with and by supporting their families, we aim to empower them to become active, vocal, and productive members of the community.

In the past thirty years since we began, we have been through quite a lot of change, and in this chapter we want to take you through our years of experiences so you get a real sense of how gradually such a facility develops. In doing so, not only will you get a better sense of who we are and what we do, but hopefully the gradual process behind our growth will be clear, providing you with inspiration and giving you a chance to see what possibilities lie ahead.

Great things do not come easy, and unfortunately, the success of certain organizations or individuals is too often attributed to good fortune or some innate super abilities they apparently have, which lie beyond the ordinary. The early small steps, the failures, the brick walls, the crumpled-up and binned pieces of paper with ideas on them, and the seemingly insignificant moments that have combined to make the whole are often forgotten when looking at their successes. But the real lessons are actually to be found in these smaller achievements and the hard work that lies behind them, and that’s why we want to go through them here. As we survey this landscape dotted with some of our milestones, we’ll explain along the way why they were beneficial and memorable. The rest of the chapters in the book will then explain how we went about reaching our goals, and give you tips and advice on how you might go about achieving your own.

As you go through this chapter, this book, and hopefully through to your own related work, we would recommend that you keep in mind what was one of the earliest directives mandated by our board of trustees: Start small, grow slowly, learn from your mistakes.

The Early Days

When we began in the 1980s, a time when mainstreaming, or inclusion at all, was not considered feasible, children with intellectual disabilities needed special services that were unavailable in either hospitals or regular school settings. These children needed to be taught by specialists who understood the complexities of their problems and who could devise programs to help them live and function as independently as possible within the community. The Help Center was created with the vision of leading these children to that independence.

Our earliest team was up against it from the start. Establishing the center at a time when there was a lot of stigma attached to