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

Foreword 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

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, Programs, and Red Tape 63

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

Transitional Plan for Zach 79

Transitional Plan for Denny 81

Chapter 8 Setting Goals to Accomplish the Transitional Plan 83

Short-Term Goals 83

Teaching Your AdultChild 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 and for Your Child(ren) 101

Other Considerations 105

Chapter 10 Working with Your Attorney 107

The Importance of the Relationship Between You and Your Attorney 107

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

Chapter 12 The Nest May Seem Empty, but You Aren't Done Yet 121

First, the Unexpected Sadness 121

Your Job Goes On 122

Advocacy Continues 126

Reevaluate Regularly 127

Chapter 13 Continuing the Civil Rights Movement for Disability Rights 131

One Step Forward, Two Steps Back 131

Creating a Community 134

Changing Inflexible Policies 135

Support Groups 135

Blogging and Online Sites 135

Appendixes

A Sample Emergency Backup Plan 141

B Sample Caregiver's Manual 145

C Team-Building Advocacy 173

D Become Your Own Advocate 177

E U.S. Government Programs 181

F For More Information 187

G Recommended Resources 193

Notes 195

Index 197

About the Author 203