Let us tell you a true story. About fifteen years ago some parents came into Mark’s law office for a consultation. They said, “Mark, we’ve actually known about you for some time. But, we finally came in today because we had a neighbor who was a middle-aged widow. She had a 9-year-old son with autism and an older son who was spending a year in college in London. The widow died. She had done no planning. No one knew who she wanted to be guardian for her child. The state “wrote a will for her” [the intestate statute] and half of her estate went to each of the boys outright. Because money went outright to the child with autism, the boy was ineligible for critically needed government benefits. The state is now spending the boy’s money on his residential and medical needs. This costs well over $50,000 a year and could have been paid for by government benefit programs. Even worse, the child ended up in an institution that was not appropriate for him. We don’t want that to happen to our child. That’s why we came in to see you today.”
Although this is an extreme example, it can happen to your child unless you learn what to do.
It’s a fact that
- If you die without a will and your child needs a legally appointed guardian to make important decisions (e.g. what doctors your child will see, where your child will live and all the other myriad decisions that you need to make as a parent) the court will appoint a guardian for your child without any help and direction from you! Don’t you want a say in who will replace you as your child’s primary caregiver?
- If you die without having done the proper planning, your son or daughter will inherit money and will likely become ineligible for critical government benefits such as SSI and Medicaid.
- If you die without having done the proper planning, the state may be able to seize your child’s inheritance for residential and medical cost-of-care claims.
- If you die without having done the proper planning, your child may not be able to manage his or her inheritance properly, potentially losing his or her last safety-net, your hard-earned estate.
- If you die without having done proper planning, the future caregivers (whoever they may be) will be clueless about what doctors and health professionals you want for your child, where you want your child to live, what makes your child happy and unhappy….
We have the solution you need.
But, first let us introduce ourselves.
Our names are Mark Russell and Arnold Grant. We’re attorneys. Mark has a brother with both a mild intellectual disability and a mental illness. Mark first became involved in this field to help plan for the future of his brother. Now he is a nationally recognized conference speaker and has concentrated his law practice for over fifteen years on estate planning for families who have a son or daughter with a disability.
Arnold’s now deceased brother-in-law had cerebral palsy and a severe intellectual disability. He first became involved in the field to help his wife’s parents plan for the future of their son. Arnold is a former adjunct professor at Chicago-Kent College of Law, and is currently a partner in the Chicago office of McGurieWoods LLP, a nationally recognized law firm with more than 700 attorneys.
Both of us have advised hundreds of families who have a son or daughter with a disability on estate and life planning matters.
After a collective 30 plus years of experience as attorneys in advising parents who have a son or daughter with a disability, we have bound all our advice, answering all our client’s questions, into one easy-to-use, step-by-step guide called Planning For The Future.
Planning For The Future shows you in an easy-to-follow, step-by-step approach how to make sure your son or daughter will lead a safe, happy, and meaningful life after you are gone.
Here’s a brief chapter outline from Planning For The Future describing the steps you should take to provide for the future security of your son or daughter with a disability.
Chapter 1: Life Planning
Future planning for families with children who have disabilities begins at the most basic level. We discuss the process of developing a life plan, which is simply a way of encouraging you, as a parent, to sit down and think about what you want for your son or daughter and, depending on the nature and extent of the disability involved, equally important, what your son or daughter wants for his or her self.
Developing a life plan is an ongoing process. It involves articulating goals in the major areas of life and then developing a plan so that those goals will be achieved.
Discover the residential, educational, employment and social options for people with disabilities and learn about the must-see websites that provide information about specific resources available in your community.
Chapter 2: The Letter of Intent
Once you have prepared a life plan for your son or daughter, it is time to communicate your ideas and knowledge to future caregivers. A Letter of Intent is an ideal format. It allows you to communicate your desires to future caregivers and will therefore prove invaluable to them.
In many cases, future caregivers will be relatives. Although they will know some of the important information relating to you child, they will not know it all. And the letter assumes even greater importance if these future caregivers are out of state and do not see your child frequently, or if the ultimate caregiver will be a trust officer at a bank.
To write a Letter of Intent, just follow our 88-item guide contained in this chapter.
Chapter 3: Advocacy and Guardianship
The single burning issue in virtually all of our clients’ minds is to make sure their child’s interests will be protected in the future. They know everything they do for their child, and they know that whatever they put in their Letter of Intent, whatever they do in terms of residential care, their child will need someone who will look out for his or her interests after they themselves are gone.
Many assume this means a guardian must be appointed. This is a very controversial issue and ultimately a very personal decision to be made by the family.
Some of our clients shy away from guardianship due to the expense, court involvement, and often the need to have their child declared incompetent before a guardian can be appointed. These clients prefer having friends and relatives act as informal advocates to deal with personal issues and a combination of trusts and representative payees to handle financial concerns. Other clients prefer the formal, legally binding relationships created in guardianship proceedings.
In this chapter we discuss the factors you will need to consider in making your decision what guardianship is, what alternatives to guardianship are available, and how you can decide which option is best for your child.
Chapter 4: Planning Your Child’s Financial Picture: The Role of Government Benefits
For most families, government benefits will play a very important role. The cost of lifetime care for a person with a disability can be high, particularly when the effects of inflation are considered. Few families have the resources to provide for children with disabilities through private means alone.
We have run the numbers many times and, taking into account inflation, housing, the possible need for supervision, medical costs, and the huge assortment of other living expenses, the cost of providing for a child with a disability through private means alone can require a privately funded trust of more than a million dollars.
Many people who have disabilities are eligible for benefits under one or more of several government programs. These programs are designed to protect the person with the disability by making sure that the person’s financial resources are sufficient to provide the basic necessities of life food, clothing, shelter, and health care.
In this chapter you will learn about all these government benefit programs, how to maximize cash benefits, and how to keep the benefits even if the person with a disability works.
Chapter 5: Calculating Your Child’s Financial Needs
Even assuming your child makes maximum use of available government benefit programs, in most cases government benefits will not be enough to provide the kind of life you will want your child to have. This is because government benefits pay for “eats and sheets” and little else. That is, the government will provide your child with room and board, but it will not provide funds for many of the activities that make life enjoyable and meaningful vacations with friends and relatives, a meal out, recreational programs at the local YMCA, and all the other activities you will list when you prepare your child’s life plan.
In this chapter, we give you the tools you need to calculate your child’s lifetime financial requirements over and above government benefits, and how much must go into a special needs trust (discussed in chapter 6) to fund those needs.
Chapter 6: The Basic Estate Plan: The Will and the Special Needs Trust
In this chapter we discuss the basic estate plan, consisting of a will, which you can use to control how your property is to be distributed when you die, and a special needs trust, which will generally be used to receive the property you intend to leave for your child.
In the case of special needs trusts involving beneficiaries with disabilities, parents generally have four objectives in mind:
- They want the trust proceeds to be available to assure a high quality of life for their child;
- They do not want the trust to affect their child’s eligibility for government benefits;
- They want to protect the property in the trust from cost-of-care claims that may be asserted by the government; and
- They want the trustee to have sufficient flexibility to use trust funds for their child’s primary care if they have difficulty placing their child in government-funded facilities or if such facilities should prove to be inadequate for their child.
In this chapter, we describe how to prepare a special needs trust for your child, so all these objectives can be realized. Our experience is that many special needs trusts are drafted much too narrowly, lacking sufficient flexibility to provide for the many needs of the person with a disability. Also, learn about the crucial, but often overlooked, provisions that will help the special needs trust endure throughout the lifetime of the person with a disability.
Chapter 7: Government Benefits and the Resource Limitation: Fixing the Problem When a Child Has Excess Resources
Parents and other relatives of a child with a disability often make gifts to the child in the hopes of building a nest egg that can be used to help defray the costs that will be incurred when the child grows older. These gifts are often inadvertently made in a manner that prevents the child from receiving government benefits.
In this chapter we discuss how you can make gifts to a child with a disability without jeopardizing the child’s ability to receive government benefits. We also discuss methods of fixing the problem if a child with a disability has received gifts in a manner that would adversely impact the child’s eligibility under government benefit programs.
Chapter 8: Using Living Trusts to Avoid Probate
In this chapter we discuss the living trust, which is a common method of avoiding probate, and the factors you should consider in determining whether a living trust is appropriate for you.
Chapter 9: Reducing the Estate Tax Owing at Your Death
In this chapter we discuss how you can significantly reduce or totally eliminate any estate taxes, so that you can leave an even greater amount to your surviving family.
Chapter 10: The Health Care and Declaration and the Durable Power of Attorney
Many people have not made their wishes regarding end of life care known to doctors and family members in a legally binding form. This has sometimes resulted in people who have lost cognitive function either receiving treatment that they would not have desired, or being denied treatment that they would have desired.
Fortunately, documents discussed in this chapter such as the health care declaration and the durable power of attorney have been developed to enable people to retain some measure of control over the type of medical treatment given to them in the event of catastrophic illness or injury.
Chapter 11: Protecting Your Property from Nursing Home Expenses
Planning your estate to ensure your child’s financial future will do little good if the bulk of your property is used up to pay nursing home expenses in your final years. In this chapter you will learn how to protect your property from the devastating costs of old age in the event that you require nursing home care, so the property will be there for you and your child.
Chapter 12: Developing Your Financial Plan
Estate planning for families that have a child with a disability necessarily involves developing financial planning strategies that will enable you to leave enough for your child to meet his or her financial needs.
This chapter discusses some of the ideas that may help you build an estate large enough to enable you to meet your family’s special needs.
Chapter 13: Personal Injury Awards
Often a disability results from an injury that gives rise to a cause of action under the law. For example, your child may have suffered a head or spinal chord injury in a car accident and the driver of another car may have been at fault, or your child may have been the victim of medical malpractice that resulted in brain injury.
This chapter discusses planning for personal injury and workers compensation settlements, and methods for reducing the impact of Medicare and Medicaid liens and maximizing future benefits.
Chapter 14: Income Taxes
Come tax time our 38 pages about tax deductions and credits that specifically apply to taxpayers with dependents who have disabilities (and to taxpayers who have disabilities) can easily save you money.
Chapter 15: The Final Steps: Putting Your Estate In Order
In this chapter you will learn a foolproof system for organizing all your papers regarding your child with a disability and the future plan for his or her security.
And Planning For the Future will work for you too.
Although we have counseled hundred of clients just like you, we don’t expect you to take our word about how our planning guide can change the course of your child’s life. Here’s what disability leaders and parents from all across the country are saying about the new edition of Planning For The Future:
"Thank you very much for sharing your knowledge and experience through this publication. The book is a real “Treasure”. It’s not only a very difficult task to raise and nurture a challenged child but, the worry and realistic anxieties that follow through life are even greater.
This book gave my husband and me ideas and comfort that we do have many options for provision for our daughter with minimal burden on other family members.
With careful planning and the info from your book, the future looks like it will be fine for her and the rest of our family when we are gone. We learned of the book through our estate planner which I’ll be forever grateful.
I’m passing on what we have learned to another family member in a similar situation. I will be ordering another copy."
- Shirley LaBombard
"Reviewing “Planning for the Future” was a real educational experience. I have never seen so much information in one place about future planning for a child with a disability. The first section blew me away - the second and third same thing. From cover to cover I was constantly learning something new. After finishing the remaining pages in this whopper of a book (which is 642 pages in length), I am happy to report that this was an extremely fruitful investment of my time. I now have the knowledge that I need to move forward in planning for my own child’s future. I plan to consult its content for many years to come. The authors cover everything from the differences in housing options to applying for SSI to caregiver options to community living to managing finances to specifying your child's joys so that they may continue after your death (even down to writing a letter which specifies that your child likes to bowl or go to the movies). Great care was taken to ensure that caregivers could understand the intended message. The lesson was never overshadowed by meaningless 15-letter words or trendy phrases. Over and over again, the authors stressed how important it is to get input from the person with the disability and to tell the people who you expect to care for your child about your decisions, which may involve them. Readers are prodded to write a "letter of intent" and to revise it each year so that it's always current and changes with the needs of the child. The book is expensive (when compared to the average novel or hobby book) but if you're looking into this topic, I would highly recommend making this purchase before consulting an attorney or hiring someone blindly. After all, planning for the future of a child with a disability is no simple work of fiction. Happy reading!"
~ Jackie D. Igafo-Te’o, Bridges4Kids
"As parents of children with disabilities, we all face that difficult question, “What about later?” There is such a vast range of issues to be dealt with you almost don’t know where to begin nor do you know how to even organize your thoughts. Thankfully, it looks like the authors of this book have done that for us. This comprehensive manual guides the reader through everything we need to know regarding the care of our beloved children when they are on their own starting from employment, shelter, recreation, health, and, of course, the business aspects of financial matters. The authors’ advice based on their legal expertise will prevent us from making critical mistakes and maximize the amount of care and benefits that we can expect for our children. This book is a must-have for all parents to serve as a helpful reference to best prepare for the coming years."
~ Yvone Link
Parent to Parent Power
"This book helped to make a sometimes confusing situation much clearer. I especially appreciated the section on government agencies. I feel I can now plan for my son’s future with a more clear direction. Thank you!"
~ Trudy Songco
"We are fortunate to have this completely revised edition. The authors have been in the business of future planning for children with disabilities for more than 30 years. The subtitle Providing a Meaningful Life for a Child with a Disability after your Death is also the theme of the book. The resource takes the reader through the life planning process step-by-step. There is so much to consider and options are clearly defined for the user. The guide is based on client questions over years of practice. A child’s government benefits are explained and tools are included to calculate the respective benefits. Strategies are proposed for balancing the assets and benefits to provide your child with a good life when you are gone. It is packed with checklists, sample letters, forms, charts, and much more. It is so comprehensive and user friendly that it will be kept for use in the reference section."
~ Elaine Butler, Librarian
Support for Families of Children with Disabilities
By the way, lawyers and financial advisers, as one of our book buyers, Shirley Lombard, said above, “We learned of the book through our estate planner, for which I’ll be forever grateful.”
Planning For The Future will help guide you as your client’s lawyer or financial advisor through this specialized and complex field so that you can literally surprise your clients with how helpful you can be in serving their special needs, building incredibly grateful and loyal clients.
Ronald Aucutt, the former President of the American College of Trust and Estate Counselors (ACTEC), has this to say about Planning For The Future:
The Fifth Edition (2005) of Planning for the Future, by L. Mark Russell and Arnold E. Grant, is an invaluable resource for parents who have a child with a disability and a must-read for anyone who counsels, might counsel, or hopes to counsel such parents. Its 634 pages are tenaciously focused on the objective stated as the book’s subtitleProviding a Meaningful Life for a Child with a Disability after Your Death. The book covers practical topics ranging from finding available aids and making the most of government resources to selecting guardians and trustees and writing instructions for personal care.
The book is many thingstreatise, essay, manual, lexiconbut most of all it is a notepad of ideas. Most of these ideas are the kinds of things that might occur to any typical parent. Because this book is based on common sense and practical experience, most people will think of some of the ideas in the book on their own. But only with this book will the reader be assured of thinking of every idea. Therein is the value of the book.
Planning for the Future eschews legalese and jargon, but explains the unavoidable technical legal and medical terms in the plainest of English. It abounds with checklists, forms, and examples. Its concepts range from simple to sophisticated. Its examples are very human and easy to identify with.
Both laypersons and professionals will find that this book is written just for them. Some will read it through and be enriched in sensitivity and skill in the process. Others will find the detailed seven-page table of contents the perfect entrance to the resources that can be selectively mined here. Whether the desk book used in daily practice or the shelf reference to turn to when needed, Planning for the Future will serve its reader well.
Ronald D. Aucutt
|Ronald D. Aucutt is a former President of the American College of Trust and Estate Counsel (ACTEC).
Okay, So What’s The Cost For This Incredible Resource?
Well, realize that it took us years to write this planning guide.
Also realize that the information in our book could easily cost thousands of dollars. Both of us, as attorneys, charge more than $200 an hour for our legal advice, and completing a future plan for our clients typically costs much more than a thousand dollars.
But we’re not going to charge you anywhere near that amount or even what it would cost you to hire one of us for even a one-hour consultation. In fact, your total investment for learning how to provide for the future security of a person with a disability is only $89.95.
That’s about 24 cents a day for a year to help you solve one of the thorniest problems you’ll ever encounter in your life time and one that you must solve: how to make your son or daughter safe, happy, and secure to the greatest extent possible for the approximate 10 to 40 year period after you are gone.
So, you’re getting thirty years of our experience for less than what it would cost you to hire one of us for a half hour consultation. Frankly, that’s a great deal.
But, better yet Planning For The Future can actually save you lots of money:
- You’ll learn the safest way to leave an inheritance to your child with a disability so it cannot be seized by the state for cost-of-care claims or render your child ineligible for government benefits. (This knowledge alone can protect your child’s entire inheritance!)
- By reading our book, you’ll have a much deeper understanding of what you need and want in terms of your estate plan, saving you lots of time -- and dollars -- when you visit your attorney. (You’ll also have a far better idea if you’ve found the right attorney to do the job.)
- The information on how to maximize and keep government benefits can save many families hundreds of dollars a year. (In many cases, your child can work and still receive government benefits if you know the rules of the game.)
- Come tax time our 38 pages about tax deductions and credits that specifically apply to taxpayers with dependents who have disabilities (and to taxpayers who have disabilities) can easily save you money.
- Finally, what’s the value of peace of mind? Knowing that you have done virtually everything under your control to secure your child’s future.
So, what are you waiting for? Don’t be one of the parents who never “get around” to planning for their child’s future. Order Planning For The Future now and be one of the parents who have successfully planned for the future security of their child with a disability.
And thank you for giving us the privilege of helping you.
L. Mark Russell and Arnold E. Grant
Click Here to Order Now
PS: As you can see from what disability leaders and parents have said from all across the country about Planning For The Future, it’s the best place to begin your planning. Join with these disability leaders and exceptional parents and order this book right now to provide for the future security of your child.
Click Here to Order Now
Disability Organizations and Leaders from all across the Country Use Planning For The Future. Here’s What They Said About Prior Editions of Planning For The Future:
“For the last 25 years, I have worked with parents/families in varying administrative roles responding to their questions and concerns regarding the future of family members who have disabilities. Always I wished I would have had this type of information available. This book is very well written and I really can’t think of a piece of information that is missing.”
- Sister Elaine Weber, O.S.F., Executive Director
St. John’s Villa, Carrollton, Ohio
“Planning is this book’s overriding feature no matter what the disability or how small or large the income, if there is a well-considered and thoughtful plan. . . children with disabilities will have a greater chance of enjoying the best possible health and security. This book is a must purchase for all parents who have children with emotional, physical, or mental disabilities.”
- Legal Information Alert
“I congratulate the authors for their approach, their comprehensiveness, and their obvious commitment to people with disabilities. This book should be read numerous times before and during estate planning with one’s own advisors.”
- Marilyn Price Spivak, Founder, National Head Injury Foundation
“A comprehensive publication which presents an easy to follow approach to addressing vital questions and burning issues that caregivers and consumers encounter. A must for every professional in the field of mental retardation.”
- B.R. Walker, Ph.D., Past President, AAMR
“Planning For The Future is a book we distribute at all Arc events. We have found it to be a great deal of value and very easy to understand for all parents concerned about planning.”
- Tony Paulauski, Executive Director, Arc of Illinois
“Planning For The Future is the most complete compilation which I have seen of useful information for planning the future of a mentally disabled family member. The authors lay out the issues and options in great detail, including sample letters. They also skillfully take the mystery out of legal jargon. Highly recommended.”
- E. Fuller Torrey, M.D, Author of Surviving Schizophrenia
“When educators assemble libraries, they tend to select two categories of books: those for themselves as instructor and those to be shared with persons with disabilities, their families, and their caregivers. Educators concerned with transition will find that this indispensable book can fit into either category.”
- Gerald Giordano, Ph.D., Book Review Editor
Career Development For Exceptional Individuals
“Estate planning for families with children who have a disability is quite different from other types of estate planning. . . Planning For The Future draws on the authors’ extensive personal experience, providing a number of case histories and specific examples to enable readers to understand the planning process. Numerous worksheets, sample documents, and useful charts are included. This book is easily understood and very helpful in addressing the many issues that face parents with disabled children.”
- Nancy Shurtz, Professor of Law, University of Oregon Law School, in a review by Estate Planning Magazine
“Now, as the time arrives to look to the future of a child with a disability, a future in which families will be absent due to aging, illness or death, the need to plan becomes urgent. This book is the place to begin the process of future care planning. It is comprehensive and thorough, taking the reader through each step and available option. The authors are generous and accurate in the information they provide.”
- Carol Obloy, Chairman, Guardianship and Trusts Network, NAMI, From a review in the NAMI Advocoate
“Planning For The Future is the perfect book for families who have a loved one with a disability. One must consider how to provide for long-term care therefore making this book a must read for all.”
- Patricia M. Johnson, Executive Director, Publisher
A Positive Approach Magazine
“Our work has been positively and significantly enhanced by this resource that removes the mystery from an extremely complex, too often avoided, legal and personal dilemma for families confronted with the many issues of disability. Going beyond my expectations, these authors have created a resource readable and practical for families experiencing disability and the professionals who support family efforts.”
- Ronnie Barclay, Parent Education Coordinator
Illinois Next Step Network, Illinois Dept. of Rehabilitation Services
“Planning For The Future provides families with a manageable way of organizing their knowledge, hopes, and fears for the future. Reading it increases parents’ chances of getting to sleep at night.”
- Carolyn Beckett, Program Specialist, Parent Educational Advocacy Training Center
“As the mother of a son who suffered from paranoid schizophrenia, I have worked for several years with a dedicated group of people who were concerned about the future of family members with severe disabilities. This book has the answers to all the questions that have haunted me. I congratulate the authors for their expertise, and their obvious compassion for people with disabilities.”
- Gwill Newman, President Emeritus, National Association for Research on Schizophrenia and Depression; Vice Chairman, Chicago Brain Research Foundation
“Planning For The Future is an extremely comprehensive and step by step approach from education and social activities to legal and financial elements to enable parents to ensure the future quality of life for their child with a disability.”
- Jeffrey A. Ditty, Ph.D., President, Neuro Education Center
“Using this book is probably the single most important planning step that you can take for your child.”
- Professor Kenneth Friedman, From a Review in The Association For Persons with Severe Handicaps (TASH) Newsletter
“Expert information on this very important often complicated topic. Very valuable for parents and professionals.”
- Stanley D. Klein, Ph.D., Editor in Chief - Exceptional Parent Magazine
“There are many times when a parent of one of our residents asks what they can do now to insure not only the financial future of their child, but also their future emotional well-being. This book meets the needs of families who are faced with these challenges.”
- Robert C. Wissinger, President, Martha Lloyd Community Services, Troy, Pennsylvania
“Planning For The Future is a valuable reference book for both parents who have children with handicaps and for professionals who offer consultation to parents and their children with handicaps . . . I enthusiastically endorse the text.”
- Bernard R. Wagner, Ph.D., President, Evergreen Presbyterian Ministries, Inc.
“The book Planning For The Future came to us at exactly the right time. We are holding an estate planning seminar in the near future. This book will give parents something concrete to use. . . It is easy to read and covers the topics so vital to the future for people who are disabled. Congratulations on a book well done!”
- Marian Mullet, Executive Director, Pathfinder Village
“Provides compelling and powerful instructions for implementing the important things a parent needs to include in their disabled child’s life and financial plan. . . It will be used as a primary planning tool for parents who come to the Pathfinder Village International Information and Conference Center on Down Syndrome in Edmeston.”
- Paul A Donnelly, Special Project Consultant, International Information and Conference Center on Down Syndrome