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The Down Syndrome Transition Handbook: Charting Your Childs Course to Adulthood

Written by Jo Ann Simons, M.S.W.

Format: Paperback, 292 pages, 8.5" x 11"
ISBN: 9781890627874
Price: $26.95


2011 IPPY Award: Bronze Medalist, Parenting

The Down Syndrome Transition Handbook helps parents prepare their child for independent adult life. It’s full of practical tips and step-by-step instructions to help families envision their child’s future, develop a transition plan, and implement it. There’s also a wealth of information about adults in their twenties or thirties living at home who are still struggling with finding a job, locating housing, or establishing a meaningful life in their community, and who could achieve more independence with the right guidance and supports.

The book is the culmination of the author’s professional and personal experiences guiding hundreds of families through the transition process, and parenting her own son with Down syndrome, now an adult living independently. Its conversational style reassures parents overwhelmed by a complex process and its frank advice offers a reality check for parents whose child will soon venture into the adult world, or whose adult child has yet to leave the nest.

The Down Syndrome Transition Handbook outlines the steps of transitioning, with an emphasis on the necessity of the child playing an active role in the process. It considers everything families need to know—from meeting broad, basic needs such as finding meaningful ways to fill one’s days (work, volunteering, leisure activities, training & education, exercise) and how to get around (driving vs. using public transportation) to addressing specific needs such as whether to leave high school at age 21 or earlier and how to maintain eligibility for benefits by keeping income and assets within allowable limits. Chapters address:

  • High School
  • Postsecondary Options
  • Testing
  • Residential Options
  • Work & other Endeavors
  • Transportation
  • Health
  • Family & Friends
  • Legal Issues
  • Financial Issues
  • Technology

Families will want this one-stop resource to demystify the transition process for teens and young adults and to help older adults still at home become more independent.


"Even if your child doesn't have Down syndrome, you'll find helpful information in this handbook for dealing with special-education transitions, special-needs trusts, guardianship, supported employment and housing, government benefits, and all those other adulthood issues you've been trying not to think about. Simons is a parent who's lived through her son's transition and has a lot of information and opinions to share." 
—Terri Mauro, Guide to Parenting Special Needs

"'What happens when my child with Down syndrome leaves school? And, what happens when I am no longer here?' Author Jo Ann Simons addresses these universal questions of parents of older children with Down syndrome in the book The Down Syndrome Transition Handbook. She describes the transition period for these individuals and their families as an Ironman Triathlon: 'It takes gathering information, training endurance, perseverance, resolve, and resources,' She draws from her personal experiences as a parent of an adult son with Down syndrome and as a social worker in the field of developmental disabilities to guide other families on the journey to adulthood.

"Simons begins with an overview of the transition period and encourages parents to have a vision for their child’s future and, most importantly, to include the child with the disability in formulating that vision. She then takes readers through the steps and processes involved in making their vision a reality, from high school individualized educational plan goals to postsecondary opportunities to job options. She provides guidance for the many decisions facing families of transition-age individuals. For example, should our son graduate with his class or continue in high school as long as he is eligible under Individuals with Disabilities Education Act? Should we pursue guardianship for our adult daughter? How can we plan financially for our child’s future? After presenting the decisions that need to be made, Simons describes the various options in detailed but easy-to-read explanations and discusses their advantages and disadvantages. Lists of questions to consider aid families in deciding what skills to focus on in high school, what types of jobs their child might pursue, and in what living environment he or she would be most successful. Throughout the book, she includes vignettes from her own and other families’ experiences.

"This comprehensive volume also covers topics that may not immediately come to mind when thinking about the transition period such as voting, use of leisure time, and communicating with an adult child’s employer or service providers. In the final chapter, Simons advises parents to create a document such as a Letter of Intent to record important information about their child to share with those who provide support now and in the future.

"Families whose children are in the midst of the transition process will likely benefit from reading this entire book. However, it is divided into chapters by topic and indexed for easy reference. The book also includes a resource guide of organizations, books, and web sites.

"The Down Syndrome Transition Handbook is directed toward parents of individuals with Down syndrome and other developmental disabilities. Its focus is on the transition period and adulthood, but much of the information is useful for parents of younger children with disabilities to begin considering as well. Professionals in various fields who work with these individuals will find it an excellent resource. As a pediatrician, I found the explanations of government funding sources and legal matters such as guardianship and estate planning particularly helpful in understanding some of the complex issues families must navigate. The only downside to this book is that the specification of Down syndrome in the title may lead to families of individuals with other intellectual disabilities missing out on the wealth of information it provides.

"Simons includes her son’s perspective on transitioning to adulthood: 'I want to tell you my side because she is not so good sometimes at letting go. Now, I am an adult and live farther away. If I fall down. I have to pick myself up. I am not her little boy anymore. She’s getting used to it.'” She shares these final words of advice for parents, 'If you don’t teach your child to cross the street, she will never know what’s on the other side. Neither will you.'" 
—Journal of Developmental and Behavioral Pediatrics, Vol. 32, No. 4, May 2011

"Ms. Simons is also the parent of an adult with Down syndrome who lives independently and she speaks eloquently about the different options facing families. She helps readers to to envision the future they and their child want, develop a transition plan, and implement it. Chapters address the transition from high school, post-secondary options, residental options, work, transportation, family and friends, etc." 
—Mile High Down Syndrome Association's Down's Update, January/February 2011

"Leaving the security of home and high school to enter the larger world as a young adult can be challenging for anyone, but, for an individual with Down Syndrome or other intellectual disability, the transition presents many additional concerns. In this excellent and comprehensive guide, Jo Ann Simons, drawing upon her professional expertise as well as her personal experience as the mother of a son with Down Syndrome, shepherds families and teachers through the transition process. This manual, with its emphasis on successful transition into age-appropriate roles in the family and the larger community, is a useful mixture of practical information and anecdotal experience. It is also one of the best books of its kind that we at have seen in many years and is an example of why we think so highly of Woodbine House publications." 
Disability Resources Online

"In health care, transition has been defined as 'purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health-care systems.' (Blum, 1993) A number of challenges to smooth transition have been reported in the literature and while it is known that health care transition has not been as successful as it could be, little empirical data has been collected to explain why. (Reiss, 2002, 2005) If the stumbling block is lack of information, Jo Ann Simons's handbook will be a welcome tool. Although her definition of transition (she quotes Webster’s 'a passing from one another') is broader than the health care definition and her new publication is geared toward individuals and families affected by Down syndrome, this thorough, extremely accessible and engaging tome will prove to be useful to a broad audience. Simons's easy-to-read style combines factual information with how-to guidance and personal anecdotes to ease folks through the seemingly formidable process in a reassuring and positive manner.

"Simons has extensive experience in the developmental disabilities field and is currently the President/CEO of Cardinal Cushing Centers, Inc. of Massachusetts and Vice-Chair of the National Down Syndrome Society. She has served on the Board of the Special Olympics, and was President of the National Down Syndrome Congress. As the parent of an adult son with Down syndrome who has successfully transitioned to independent living, Simons is well positioned to coach families. This book is highly recommended for consumer health collections." 
CAPHIS Consumer Connections

"This book is intended to help parents prepare a child with Down syndrome or other intellectual disability for adulthood. It is full of practical tips and step-by-step instructions for developing a transition plan.

"The topics dealt with include high School, IEPs and transition goals, postsecondary options, residential options, financial issues, legal issues (bearing in mind that this book is published in the US), training and employment, transportation, health care, family and community.

"The first chapter 'Transition – What’s it All About?' presents various planning tools and options which will help families and individuals to identify their goals and includes a 'Steps in Transition' chart which identifies which steps need to be taken at various ages.

"Written by the mother of a boy with Down syndrome, this chatty, liberally illustrated volume is described by the co-founder of the National Down Syndrome Society as 'a goldmine of vital information.'" 
New Zealand Down Syndrome Journal

"This is a phenomenal resource for young adults with intellectual disabilities and their families, as well as educators and service providers. Looking down the road to adulthood can be fearful and anxiety-ridden for parents. Jo Ann Simons's work, laced with both personal and professional expertise, will ease those fears and anxieties with a practical and pragmatic roadmap of advice and resources." 
—Barbara Gaffney, parent of self-advocate and long-distance swimmer, Karen Gaffney

"In an easy style born of practical experience, Jo Ann Simons helps parents of children with Down syndrome manage all the ups and downs of becoming a parent of an adult. You will laugh, you will cry, and you will keep this book on your bedside table to comfort and guide you through all the changes you love and dread--at the same time!" 
—Timothy P. Shriver, Ph.D., Chairman & CEO, Special Olympics

"Very often parents find that when they and their self-advocate attempt to navigate the transition from school to adulthood, the waters can get choppy and even turbulent. My advice is: start early and keep this readable, instructive transition guide, with its enlightening personal insights and stories from the author and many others who have made the journey, at the ready." 
—Madeleine Will, Former Assistant Secretary of Education, Former Chair of the President's Committee for People with Intellectual Disabilities

"At a time when students with Down syndrome are wowing the world, this handbook paves their way to successful adulthood. Written in a no-nonsense style, the book provides direct, real, and meaningful ideas."
—Brian Skotko, MD, MPP, co-author, Common Threads: Celebrating Life with Down Syndrome and Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters

"Jo Ann Simons has given us a goldmine of vital information to refer to again and again as our children progress from their early teen years into adulthood." 
—Elizabeth Goodwin, Co-founder, The National Down Syndrome Society

Table of Contents



Chapter 1: Transition--What’s It All About?

Chapter 2: Pomp and Circumstances--Getting the Most Out of High School

Chapter 3: Movin' On: Postsecondary Options

Chapter 4: What's the Score?

Chapter 5: Legal Issues and Hurdles

Chapter 6: If I Were a Rich (Wo) man, Or Money Makes the World Go 'Round

Chapter 7: It's a Jungle Out There--Creating a Meaningful and Purposeful Day

Chapter 8: Feels Like Home to Me

Chapter 9: An Apple a Day

Chapter 10: I Get By with a Little Help from My Family and Friends

Chapter 11: Technology, Transportation, Recreation, Risk, and What's Left Over

Chapter 12: It's a Brand New World

Chapter 13: Footprints for the Future

References and Suggested Reading

Resource Guide


About the Author

Jo Ann Simons is CEO of the Cardinal Cushing Centers of Massachusetts. She is Vice-Chair of the National Down Syndrome Society and of LIFE, Inc. on Cape Cod. In addition, she served as the President of the National Down Syndrome Congress and on the Board of Special Olympics, Inc., and was a founder of the Massachusetts Down Syndrome Congress. She and her husband live in Swampscott, Massachusetts. They have two adult children, one of whom has Down syndrome.


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