Estate Planning

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Abstract

This issue of NEWS DIGEST focuses on one very important and often complicated issue that parents confront when they have a son or daughter with any type of disability: How to plan their estate to best provide for their child's future security. Parents may ask themselves: "What will our son or daughter do when we are no longer here to provide help when it's needed? Where -- and how -- will our child live? Will he or she have enough money to sustain a decent quality of life?"

Other questions parents may ask themselves focus on the estate planning process itself: "How do I know what I am planning is going to work? Do I have enough money to hire a lawyer and write a will? Do I even have anything to leave my children?"

These are very difficult questions for parents to consider -- and difficult ones to answer. When a child has a disability -- be it mild, moderate, or severe -- parents have concerns about that child's future. This NEWS DIGEST is directed towards addressing these concerns. The information provided in this document is relevant both to families whose child is already independent or is expected to be so, and to families whose child will need moderate or extensive support or supervision throughout life.

As parents, you may have a tentative plan in the back of your minds that one day, in the near or distant future, you will write a will that leaves your son or daughter with a disability sufficient resources to make his or her life secure. Many of you may have already written such a will. Yet there are many things to know and consider when planning your estate. For example, bequeathing a person with a disability any assets worth more than $2,000 may cause the person to become ineligible for government benefits such as SSI and Medicaid. For many individuals with disabilities, the loss of these benefits would be a devastating blow. In addition to the cash benefits and medical coverage that would be lost, the person would also lose any number of other government benefits that may be available to eligible persons with disabilities, such as supported employment and vocational rehabilitation services, group housing, job coaches, personal attendant care, and transportation assistance. Therefore, it is our hope that you, as parents, will read and thoroughly consider the information presented in this issue. The future security of your son or daughter with a disability may well depend upon the actions you take to establish an estate plan appropriate to your child's needs.

The first article in this NEWS DIGEST provides an overview of estate planning for parents of an individual with a disability. The second article describes how parents can create a Special Needs Trust and how this trust can be used to ensure that the person with a disability receives the supplementary care needed in the future. The third article focuses upon the Letter of Intent, a document that parents write to describe their son or daughter's background and present lifestyle and their own wishes, plans, and hopes for that individual's future. Often written in collaboration with the son or daughter, this letter is intended to provide future caregivers with insights into the person with a disability, which permits informed care to be given immediately, should anything happen to the parents. This NEWS DIGEST concludes with a listing of organizations and books that can provide readers with further information.

While we have endeavored to present useful and accurate information, you should be aware that laws and procedures are constantly changing and that this NEWS DIGEST is not a substitute for seeking expert advice. To formulate a legally valid estate plan, you will need the services of a professional familiar with estate planning, preferably one who has expertise in planning for parents of persons with disabilities. Only through these services can you be assured that your son or daughter has been provided for in the most secure way possible.

Special Note

Throughout this News Digest, you will see phrases such as "your child with disabilities," "children with disabilities," or "parents of children with disabilities." We have used the words "child" and "children" to simplify reading, but this does not imply that we are speaking only of young children. Indeed, we are speaking of individuals of all ages -- young children, adolescent children, and adult children. At age 5, 21, or 45, "your child" remains your child, your offspring. He or she may be living independently, in a group home, with a relative or friend, or with you. Regardless of the age of your son or daughter, estate planning to provide for his or her future needs is important.

Credits

Volume 2, Number 1, 1992

NICHCY thanks our Project Officer, Dr. Sara Conlon, at the Office of Special Education Programs, U.S. Department of Education, for her time in reading and reviewing this document. We also thank the individuals who reviewed the draft manuscript and provided many thoughtful comments and suggestions: Dr. Ann Larkin, Professor at Lesley College in Cambridge, Massachusetts; Marge Goldberg, at the PACER Center in Minneapolis, Minnesota; Carol Reedstrom, of Estate Planning for Persons with Disabilities in Bloomington, Minnesota; and Thomas Anderson and Jonathan Abbett, of The Equitable, Klose Agency, in Falls Church, Virginia.

Project Staff

Project Director: Carol H. Valdivieso, Ph.D.
Deputy Director: Suzanne Ripley
Editor: Lisa Kupper

This document is made possible through Cooperative Agreement #H030A30003 between the Academy for Educational Development and the Office of Special Education Programs of the United States Department of Education. The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government.

This information is copyright free. Readers are encouraged to copy and share it, but please credit the National Information Center for Children and Youth with Disabilities (NICHCY).

Your comments and suggestions for NEWS DIGEST are welcomed. Please share your ideas and feedback with our staff by writing to the Editor.