The S.M.A.R.T. Special Needs Trust
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 How the S.M.A.R.T. Special

Needs Trust is Designed to

Protect a Person

​with a Disability for Life

How 
Many parents assume that special needs trusts are all basically the same.

 Sadly, it’s just not true.

 I know this from experience.


Hi, my name is Mark Russell.

 I'm an estate-planning attorney.

In 1983 I wrote the first book in the country about special needs trusts. I have written or co-authored four books about estate planning for parents who have a child with a disability, including the 634-page
Planning For The Future: Give Your Child with a Disability the Gift of a Safe and Happy Life (7 editions).


For over 34 years almost all of my clients have been parents who have a child with a disability.

I have reviewed hundreds of special needs trusts. I have also reviewed special needs trusts drafted by attorneys nationwide when I served as "Of Counsel" for an organization called Estate Planning for Persons with Disabilities (no longer in existence).

You know that the special needs trust is the heart and soul of planning for the future security of a person with a disability.



​But here’s what’s not talked about enough: Special needs trusts differ dramatically in their capacity to protect the beneficiary with a disability for life.


In a nutshell, our challenge is will the special needs trust protect the person with a disability 20 or 30 years after the parents die?

That's worth repeating another way....

Protecting the person with a disability "for life" is the formidable part.

Fortunately, many special needs trusts drafted by highly experienced estate planning attorneys in this area do an incredible job of protecting the person with a disability!

However, the bad news is many special needs trusts are
heartbreakingly inadequate. Drafting problems will certainly affect the person with a disability.

I don't say this lightly. I'm simply telling you what I've seen after reviewing hundreds of special needs trusts over the past 34 years.


It’s no one’s fault that there is such a range in the quality of special needs trusts.

 Most estate-planning attorneys only occasionally draft one. And their trust form may be outdated. 

However, the problems I see when reviewing special needs trusts are often not the core problem. They are symptoms of a foundational problem of not realizing that...
 

Protecting the person with a disability for life starts with a

strategic mindset 

We need to plan for the future security of the person with a disability as strategically as General Eisenhower planned for D-Day. In a 1957 speech, then-President Eisenhower would offer these insights about military planning: "Plans are worthless, but planning is everything. There is a very great distinction because when you are planning for an emergency, you must start with this one thing: the very definition of "emergency" is that it is unexpected; therefore it is not going to happen the way you are planning."

In other words, to protect the person with a disability for life, you need a special needs trust that is written to expect the unexpected—engineered to respond and adapt to the unexpected.

Dallin H. Oaks, eminent jurist and law professor, agrees. He states that the goal of estate planning is to “Plan specifically, so you can implement flexibly.” 
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In other words, you need to specifically craft the special needs trust to have the flexibility to respond to your child’s changing needs after you are gone.

Your child with a disability may survive you by twenty or

thirty years, or more. Here are just a few things that may

change in that time:

Where your child lives may change. If your child lives with you now, he or she may move in with a sibling or into a residential program after you die. Perhaps the trustee will buy a condo for your child. Your child may age out of a residential program or develop medical issues that require a nursing home. My brother Jon, who has a disability, has lived in four different places since our parents died.

Your child’s health may change. Medical advances may improve your child’s condition. Or perhaps the medications your child takes become less effective and your child’s symptoms grow worse. The trustee of the special needs trust may have to pay for co-pays, deductibles, and private services not covered by benefits.

Your child’s trustee, guardian, or caregivers may change: The trustee you name for the special needs trust after you die will likely not be the trustee for your child’s entire life. Similarly, the guardian for your child with a disability may change.

State services for people with disabilities may decline: Thirty-three states faced revenue shortfalls in 2017, bringing in less money than they projected for public services, according to the National Association of State Budget Officers. That’s more than any year since 2010.

Government benefit laws may change: The laws regulating Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicare, Medicaid, and other government benefits, may change—or be reinterpreted. Also, if your child moves to another state to be close to a sibling, the new state’s Medicaid laws may have different eligibility requirements.

Your child’s work may change: Just as for us, your child’s work life will experience peaks, valleys, and plateaus. Your child may become unemployed and need government benefits. Perhaps your child lands the perfect job and no longer qualifies for SSI or traditional Medicaid. Perhaps your child tries a new job every couple of years.

Here’s the takeaway:  You cannot predict what exactly will change over your child’s lifetime, but you can have what I call a S.M.A.R.T. special needs trust specifically written to expect, respond, and adapt to change.

  A brief explanation of the S.M.A.R.T. special needs trust
 ​

SMART is an acronym that highlights the five distinctive elements of an effective special needs trust.

1. SMART LANGUAGE


Flexibility is the number one strategic imperative. The trustee must have the power to adapt and respond to the changing needs and circumstances of the person with a disability. Too many run-of-the-mill special needs trusts unnecessarily restrict what the trustee can buy for the person with a disability; they also lack provisions for possible changes in law, or if the person moves to another state, or the death or incapacity of a caregiver, or the person's loss of eligibility for government benefits, or many other changes in the circumstances of the person with a disability. Too many ordinary special needs trusts do not plan for the unexpected.

2. MISTAKE AVOIDANCE:


The SMART special needs trust avoids the common mistakes found in the typical run-of-the-mill special needs trust. Most mistakes in a poorly drafted special needs trust result from the attorney reusing, without modification, the boilerplate provisions found in most trust forms. The result can be a loss of SSI or Medicaid.

3. AGENCY COMPLIANCE:


The SMART special needs trust smoothly accommodates the preferences of governmental agencies such as Social Security or Medicaid that will review the trust.  The SMART special needs trust connects the dots for government representatives by showing in plain language how the trust complies with legal issues the representatives are instructed to look for. On the other hand, a typical special needs trust does not connect the dots. The representative has to hunt or reason their way through the trust because the trust language does not plainly reveal what the representative needs to see.

4. REMAINDER PROVISIONS:


A SMART special needs trust reflects the parents true wishes about what happens to the remainder of the trust assets after the person with a disability dies. A typical special needs trust routinely repeats the default language found in trusts that are not designed for beneficiaries with special needs. 

5. TRUSTEE PROVISIONS:


When parents and their attorney discuss a SMART special needs trust, they focus a large percentage of their time on the critical language dealing with trustee succession, individual or corporate trustees, and sole or co-trustees.  They make sure to avoid boilerplate trustee provisions found in most trusts that can jeopardize the child’s eligibility for benefits.

So, after advising parents who have a child with a disability for 34 years, I knew I had to find a way to get my experience into the hands of parents and professionals.
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My brand new book

I have just finished my brand-new book called The S.M.A.R.T. Special Needs Trust: How the S.M.A.R.T. Special Needs Trust Protects a Person with a Disability for Life. 
​
This book is my more detailed and practical follow up to the book 
I co-authored called Planning for the Future: Give Your Child With a Disability the Gift of a Safe and Happy Life ( 7 editions and currently out of print). 

Although Planning For the Future was 634 pages, we devoted only a part of one chapter to the special needs trust. 

Realizing that the special needs trust is the heart and soul of legally protecting your child with a disability, m
y new book, although much shorter (192 pages), focuses only on the the special needs trust.

For those who are unaware of our earlier book, Planning for the Future, here are a few reviews:
​

 I have never seen so much information in one place in my entire life about future planning for a child with a disability...This book has already answered every single question that I've ever had about the future, in regards to my son, who has autism." 

Jackie D. Igafo-Te'o, Bridges4Kids

​"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
​
"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.

“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*

"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 Advocate

"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 

"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

In this era of shrinking federal and state government resources dedicated to the special medical, psychological, and educational needs of today’s sizable population of children with disabilities, the vital role to be played by a carefully-crafted estate plan in assuring these children’s comprehensive well-being cannot be overemphasized. This is the thematic platform from which noted authorities L. Mark Russell and Arnold E. Grant focus on this special aspect of estate planning in their latest (the fifth) version of Planning for the Future: Providing a Meaningful Life for a Child with a Disability After Your Death. In many ways, this new edition is a brand new book. Its arrival comes nearly a decade after its immediate predecessor, a period during which dramatic changes in both federal and state laws have taken effect. Moreover, the text is considerably expanded and generously augmented with charts, tables, practical examples, and appendices with useful planning tools. This work is a fine overview of an important area of estate planning practice. The book is praiseworthy for its suitability as a reference source for both the professional practictioner and the families of special-needs children. The authors’ conversational style ensures easy digestion of the book’s contents, yet every paragraph is substantive and to-the-point. Indeed, the text anticipates almost every conceivable question that may arise in addressing the diverse array of care considerations for children with disabilities. In sum, the combination of accessibility and comprehensive content makes this a most laudable book – one that is sure to find a spot on many a home bookshelf as well as the professional planner’s reference desk."  

​
By Nancy Schurtz for Estate Planning Magazine. Nancy Shurtz is a professor at the University of Oregon School of Law in Eugene. She is also Editor of the Media/Book Products Committee of the ABA’s Real Property, Probate and Trust Law Section.

With my 34 years of experience, I want to help you achieve

​the future security your child deserves.
 ​

All parents want to protect their children especially if the child has a disability. You want the best situation for your child after you pass away.

​I can only imagine how much you have worked to raise your child. With my 34-years of experience, I want to help you achieve the future security your child deserves.  

Reading this book will give you the peace of mind that only comes to people who are well informed and prepared. 

Here's the Table of Contents of The S.M.A.R.T. Special Needs Trust: How to Protect a Person with a Disability for Life:.
​
- Important: Read this first
- Asked and Answered: A Few Basic Concepts About
​Special Needs Trusts
- CHAPTER 1  Strategic Mindset 
- CHAPTER 2  The S.M.A.R.T. Special Needs Trust
- CHAPTER 3  SMART Language
- CHAPTER 4  MISTAKE Avoidance
- CHAPTER 5  AGENCY Compliance
- CHAPTER 6  REMAINDER Provisions
- CHAPTER 7 TRUSTEE Provisions
- PLANNING DOCUMENTS:
1. Preparation for Attorney Meeting 
2. Letter of Intent
​3. Estate Plan Organizer
- ​Glossary

In the pages of my new book, you’ll also learn:


What is a trust’s distribution standard?

Did you know that the quality of your child’s life depends on the the special needs trust’s “distribution standard?” Special needs trusts vary dramatically in what the trustee is permitted to buy for the beneficiary. It all depends on  the trust’s distribution standard. (Page 34)

What if my child has a relatively high degree of independence?

If you have a child with a higher degree of independence and you don’t know whether your child will need or qualify for SSI or traditional Medicaid, this section is critical. (Page 43)

What if the laws change?

The premise of a SMART Special Needs Trust is that you must plan for the unexpected. (Page 46)

What if your child moves to another state?

What if your child with a disability moves to another state to live with a sibling or other relative? Is the amendment provision allowing the trustee to amend the special needs trust to conform to changed laws sufficient? No. Here’s why: State laws have not changed; your child’s location has changed. This is of particular concern regarding Medicaid coverage. (Page 49)

What if changes in the law make trust assets vulnerable to state claims?

What if the laws change after you die, and the state tries to seize the assets of the special needs trust for cost-of-care claims?  (Page 50)

If your child lives in a residential program can the trustee make a donation?

State-funded residential programs often need private donations to survive. Some nonprofit residential programs are under such financial pressure that they are reluctant to admit a person with a disability unless that person’s special needs trust authorizes the trustee to make these small donations. (Page 55) 

Should the trustee be able to give money directly to your child?

Do you ever give your child to go to a restaurant, movie, or to the mall? Do you want the trustee to have the authority to give money directly to your child? Here are some best options without  jeopardizing government benefits. (Page 56)

How should you give tangible property to your child? 

​The problem is that you don’t want your child with a disability to receive anything outright-even tangible property. Although Social Security no longer counts household goods and personal effects as a resource to decide a person’s eligibility to receive SSI benefits, there are exceptions. (Page 59)

Do you want your child to live in a home or condo?

Do you want your child with special needs to live in your home after you die? Or in a condo purchased for your child? If so, your trustee may risk violating the prudent investor rule…(Page 61)

What if your own medical needs threaten to wipe out your estate?

What if you go into a nursing home? What if your entire estate is spent down for your own end-of-life care? There would be no assets remaining to leave the special needs trustful your child. How can you avoid this scenario? (Page 63)

Who is looking over the shoulder of the trustee?

In most states, the trustee is required to account every year for all trust investments, distributions, and transactions, showing the activity in the trust. The trustee accounts to the beneficiary. In other words, the trustee of the special needs trust has to send an accounting to your child with a disability.  You see the problem? Your child may not understand the accounting. (Page 65)

What if a future grandchild of yours has a disability?

Rarely do I see this important provision in a trust. It is possible an unborn grandchild of your might someday receive a portion of your estate. What if the grandchild has a disability? This is a special concern when there is a family history or genetic pattern associated with a particular disability. You don’t want the grandchild’s inheritance distributed outright to the grandchild, nor do you want the grandchild’s share going into a standard trust that would disqualify the child from receiving SSI and Medicaid. (Page 67)

What is the value of permitting the trustee of the special needs trust to fund an ABLE account?(Page 68)

Changing the Situs

The situs of a trust is where the trust is located legally. It is a good idea to give the trustee power to change the situs of the trust as necessary for any number of reasons. (Page 70)

Coordinating First and Third-Party Trusts(Page 72)

The Savings or “Null and Void” Clause (Page 73)

How do you name a trust?(Page 75)

Coordinating with the Letter of Intent

Alex Haley, the author of Roots, once said “Every time an old person dies, it’s like a library burning down." Whatever your present age, you are the “library” of your child’s life. You have spent your child’s life thus far in watchfulness, care, and advocacy. You know your child’s abilities and needs, likes and dislikes; you know what works and doesn’t. How can you pass this vital knowledge to the next generation of those caring for your child? (Page 77)

Trust Purpose(Page 79)

Avoid the “HEMS” Distribution standard.(Page 82)

Protect your child if you become incapacitated but do not use a common default provision (Page 83)

Beware of the “Accepting Additional Property” Default Provision (Page 85)

Watch out for the small trust termination default provision.(Page 87)

Do not have a payback provision for a third-part special needs trust with one possible exception (Page 88)

Never have a mandatory payment of income provision (Page 90)

Are you a public teacher or professor? Police officer? Firefighter? Government employee? There’s good news and bad news.

Are you a teacher or have a government job and expect to receive a public employee pension? The good news is that many public pensions provide generous survivor benefits for children who have a disability. The bad news is that qualifying for that pension requires a tricky combination of awareness and planning. (Page 91)

Don’t be fooled by the “Facility of Payment” Provision. (Page 92)

Cite the law that you are relying on to establish to establish the special needs trust. (Page 96)

Make it crystal clear to Social Security and Medicaid that the assets in the special needs trust do not count as a resource of the beneficiary.

The paradox  with many special needs trusts is that they are too specific when limiting what the trustee can buy for the beneficiary, and they are not explicit enough when stating the beneficiary has no control over the assets in the trust. (Page 97).

Be clear about who can and cannot revoke the trust.

The key to navigating smoothly through Social Security’s special needs trust review is to anticipate which provisions they scrutinize. (Page 101)

Prevent the beneficiary from selling assets in the trust .

The special needs trust should explicitly address any item of special concern to Social Security. (Page 104)

Can the trustee use all the assets in the trust for your child?

With a special needs trust, your child is the current beneficiary of the trust. The remainder beneficiaries are the people or entities, such as charities, that receive all or a portion of the remaining trust estate after your child dies. The trustee has a fiduciary duty to both the current beneficiary, your child, and to those people or entities that will receive the remaining trust assets after your child dies — the remainder beneficiaries. This dual responsibility could create a dilemma for your trustee. (Page 108)

Provide for funeral an burial expenses.(Page 109)

Consider all implications of a per stirpes distribution (Page 109) 

Can you name a charity as a remainder beneficiary? What are your options? (Page 111)

Considering a Power of Appointment (Page 115)

Can the acting individual trustee appoint successor trustees?

A special needs trust must last your child’s lifetime. Your child might outlive whomever you originally appoint as trustee. (Page 118)

Can the beneficiary be a trustee?

Your child, the beneficiary, cannot be the trustee. Here’s the first problem: Many trusts say if all the trustees are unable or unwilling to act then the beneficiary of the trust has the power to appoint the trustee. Here’s the second problem: If all the named trustees are unable and unwilling to act, many state statutes say the beneficiary of the trust can appoint a trustee. (Page 119) 

Can the individual co-trustee replace a corporate co-trustee? (Page 120)

Protect the trustee.(Page 121)

SPECIAL BONUS: Throughout the book I give you Language for Your Lawyer to Consider.
CLICK HERE FOR A SAMPLE OF THE BOOK

About me

My older brother Jon is dual diagnosed with an intellectual disability and a bipolar disorder. Sharing Jon’s life journey has changed everything for me. That's me on left. Jon in the middle. And Dr. Dave on the right. We're brothers. Jon's the oldest and I'm the youngest.

I have concentrated my law practice since 1981 on estate planning for families who have a child with a disability, helping hundreds of parents plan for their child’s safe and happy future. 

​Two years after graduating magna cum laude from Kent law school, in 1983, I wrote the first book in the country on special needs trusts and estate planning for parents who have a child with a disability (no longer in print). In it I also introduced the concept of the Letter of Intent and in 1990 created a Letter of Intent template still used by parents across the country. In 1993, I co-authored the book Planning for the Future: Give Your Child With a Disability the Gift of a Safe and Happy Life (7  editions and currently out of print).
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I have spoken about special needs future and legal planning on public TV, to national, state, and local organizations in the disability field, and to parent and school groups. A wide variety of publications have praised my books including the New York Times, Estate Planning Magazine, Estates, Gifts & Trusts Journal, and Kiplinger’s Personal Finance Magazine.

Other Involvements:
  • Legal Counsel for Estate Planning for Persons with Disabilities (EPPD).
  • Executive Director of the National Alliance for Research on Schizophrenia and Depression, currently called Brain and Behavior Research Foundation that since 1987 has awarded more than 380 million to fund more than 5,500 grants to 4,500 scientists around the world.
  • U.S. Representative to the International League on Disabilities – legal rights committee.
  • ​Founding board member of PACT, one of the first private charitable advocacy, guardianship, and trust organizations in the country.

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You cannot predict what exactly will change over your child's lifetime, but you can have what I call a S.M.A.R.T. Special Needs Trust specifically written to expect, respond, and adapt to change. 

Best Regards,

​Mark Russell

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Although the book is brand new, here's what other readers have said about The S.M.A.R.T.Special Needs Trust: How the S.M.A.R.T. Special Needs Trust Protects a Person with a Disability for Life:

“A splendid, wonderfully comprehensive book! As an advocate who frequently sat with parents/relatives of individuals with a disability, encouraging them to begin the emotionally difficult process of creating a trust, I can categorically state that Mark’s S.M.A.R.T. Special Needs Trust is a godsend!! This book provides both the family and their attorney the steps to be taken and the wording to be used for an effective and enduring Special Needs Trust, leading to the family’s peace of mind while the person with disabilities is assured the funds that can make life just a little more special! Great Job." 

Sheila Ryan-Henry, MSW, ACSW

"The book clarified many of the areas that I find complicated.  As an benefit advocate, assisting individuals with disabilities apply for government benefit, I understand the importance of families having a smartly drafted special needs trust. Thank you for breaking down this complicated subject, and making it easy for the average person to understand,  I’ll definitely keep this book by my side and use it as a handbook in the future. It will be an excellent resource for parents and professionals!"

Teri Bodeman

"It is so very informative, concise, and very easy to follow.  What a wonderful resource for families everywhere.  Cannot wait to share it with other families."

Teri Dudasik

"A book for everyone who loves a disabled person and worries about their present and future needs. Mark gives clear and concise advice and guidelines to make appropriate choices in an area with impactful legal decisions. He leaves no room for dangerous poor options. His insights are a comfort to the insecure feelings of legal ignorance. He gives all options and allows for personal preference. Explanations lead to questions. He educates as he guides to appropriate decisions. 

His book is invaluable for protecting the disabled person in the mine-field of laws and regulations after incompetency or the death of parents, guardians, siblings, or trustee. There is no legalese in his descriptions. 

Guidelines for choosing a lawyer, keeping the lawyer competent by asking appropriate questions, making suggestions based on Mark’s suggestions and being prepared for changes in the law and surprise circumstances are invaluable and eye-opening.

The planning document worksheets are invaluable because they force questions to be created and asked of the lawyer writing up the documents to get the best life plan. They organize important information needed to create the documents.

Most importantly, the completion of all the documents will give peace of mind that money cannot buy by knowing you have a complete plan to protect the person with a disability you love from neglect and abuse when you are can no longer make those decisions."

Rosemary Pulice, B.A., M.S., MBA

​"The writing and direction was thorough yet understandable. The whys of how to structure and manage The SMART Special Needs Trust are very clear in your book. This is a terrific guide for parents and advisors. Thanks for being a great resource on this complex subject." 

Kevin J. Meehan, Regional President
Wealth Enhancement Group


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