Parenting an Adult with Disabilities or Special Needs: Everything You Need to Know to Plan for and Protect Your Child's Future

225 Pages·2009·3.64 MB·English

by  Peggy Lou Morgan

Parenting an Adult
with Disabilities
or Special Needs
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Parenting an Adult
with Disabilities
or Special Needs
Everything You Need to Know to Plan
for and Protect Your Child’s Future
Peggy Lou Morgan
New York ■Atlanta■Brussels■Chicago■Mexico City
San Francisco ■Shanghai■Tokyo ■Toronto ■Washington, D.C.
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Library of Congress Cataloging-in-Publication Data
Morgan, Peggy Lou, 1950-
Parenting an adult with disabilities or special needs : everything you
need to know to plan for and protect your child’s future / Peggy Lou
Morgan.
p. cm.
Includes bibliographical references and index.
ISBN-13: 978-0-8144-0991-6 (pbk.)
ISBN-10: 0-8144-0991-1 (pbk.)
1. Parents of children with disabilities. 2. People with
disabilities—Services for. 3. Parent and adult child. 4. Parenting.
I. Title.
HQ759.913.M68 2009
649'.151—dc22
2008033521
© 2009 Peggy Lou Morgan
All rights reserved.
Printed in the United States of America.
This publication may not be reproduced, stored in a retrieval system, or transmitted in
whole or in part, in any form or by any means, electronic, mechanical, photocopying,
recording, or otherwise, without the prior written permission of AMACOM, a division of
American Management Association, 1601 Broadway, New York, NY 10019.
Printing number
10 9 8 7 6 5 4 3 2 1
For
Raymond A. Jones, Jr., our pastor, friend, and encourager
during some of the most difficult times Billy Ray
and I have experienced;
William E. Brown, my agent who taught me how to put
my thoughts in marketable form and use the Internet
to help get my message out, and who found me
such a wonderful publisher;
Ellen Kadin, at AMACOM Books, my wonderful editor
and very special friend, who has taught
this inexperienced author so much
about publishing and how to get the message
of encouragement out to parents;
Bud Pugh, my teacher, spiritual advisor, friend, and encourager,
who taught me so much about public speaking; and
Richard Lighthill, our pastor and friend, who is always
there for Billy Ray and me.
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Contents
Foreword by Beth Mount xi
Acknowledgments xv
Introduction 1
CHAPTER 1
The Nest Is Never Empty 11
An Empty Bedroom Does Not Clear the Nest in Your Heart 11
What About Your Needs? 15
Becoming Proactive 16
CHAPTER 2
That Nagging Question 19
What Happens to My Child When I’m Gone? 19
Making Peace with That Nagging Question 24
Transition Planning Eases That Nagging Question 26
CHAPTER 3
Loneliness Is the Only Real Disability 27
Relationships—The Most Important Part of Life 27
Teaching Her to Maintain Relationships 32
Your Adult Child’s Story 33
Writing Your Child’s Story 34
Who Will Maintain the Story? 36
Friends as Advocates 37
vii
viii Contents
CHAPTER 4
Your Child’s Pursuit of Happiness 39
The Struggle for Rights 39
More Than a U.S. Problem 40
Red Tape, Confusion, and a Poverty Track 42
Why It Is So Hard to Get Help 44
CHAPTER 5
Discovering Your Child’s Dream 49
You Have to Start Somewhere 49
Happiness Is Not the Same for Everyone 50
Creating the Transition Planning File 51
Vocational Considerations—Finding the Natural Skills 52
It Must Be Realistic 58
Residential Dream 61
CHAPTER 6
Researching the Options 63
More Than You Ever Wanted to Learn About Policies, 63
Programs, and Red Tape
Private Funding 64
Government Funding 65
Where You Live Matters 66
Establishing Contact with Your Local Agency 68
Vocational Programs 69
Residential Options 70
Other Things to Consider 70
CHAPTER 7
Drafting a Transitional Plan 73
Writing the Plan 73
Transitional Plan for Judy 75
Contents ix
Transitional Plan for Zach 79
Transitional Plan for Denny 81
CHAPTER 8
Setting Goals to Accomplish 83
the Transitional Plan
Short-Term Goals 83
Teaching Your Adult Child to Be a Self-Advocate 92
Creating Short-Term Goals for Other Types of Plans 93
CHAPTER 9
Estate Planning 97
Something We Gotta Do Someday 97
A Plan Takes More Than a Will or Trust 98
Representatives to Act for Your Estate 101
and for Your Child(ren)
Other Considerations 105
CHAPTER 10
Working with Your Attorney 107
The Importance of the Relationship Between You 107
and Your Attorney
Some Tips for Working with an Attorney 108
CHAPTER 11
Implementing the Plan a Step at a Time 111
Reclaiming the Wait Time 111
Accumulating Things for the New Home 112
Creating and Preparing a Schedule 113
Creating a Training Manual 114
Finalizing the Transition Plan and Short-Term Goals 118