Service Dogs Can Change a Life

By James Caffry, Esq., and Richard A. Courtney, CELA

The relationship between canines and humans has been evolving for at least 14,000 years, and service dogs are a prime example of how we’ve benefited. Many people confuse the various types and roles of assistance dogs. According to Assistance Dogs International, Inc. (ADI), “assistance dog” is a generic term used for a guide, hearing or service dog specifically trained to do more than one task to mitigate the effects of an individual’s disability. A “therapy” dog, usually present to provide comfort or protection, does not qualify as a “service” dog. Although both therapy and service dogs make valuable contributions to the well-being of those with whom they interact and may undergo training, service dogs have a legally protected status through the Americans with Disabilities Act and can accompany their owners anywhere. We’d like to share our experiences with three very different dogs to give you an idea of how varied the services are that these animals can provide.

Madine is a service dog that spends her days alongside Melanie Courtney, an office assistant at Courtney Elder Law Associates. The 42 commands that Madine has mastered enable her to perform such tasks as opening drawers, picking up keys and turning on lights. Melanie is responsible for much of the dog’s care and, on command, Madine will step onto the foot plates of Melanie’s wheelchair in order to be groomed. Madine is also a bridge to the larger community. Individuals with disabilities often feel isolated, but when out and about, Melanie is frequently approached by strangers who strike up conversations about her beautiful dog.

Gus, who hangs out at the same law firm, is a therapy dog. Although his training was very different from Madine’s he, too, is certified, having passed “advanced obedience”, “distraction training” and “supervised visits.” Gus’ job is to make people feel good, and two nights each month he visits state hospitals and nursing homes to do what he does best. He’s insured by an organization called Love on a Leash, because facilities increasingly require formal reassurance that a dog’s temperament and training are appropriate for visits to vulnerable populations.

Louie, a one hundred pound black lab mutt, is a skilled companion dog. He is 11-year-old Duncan Caffry’s autism service dog. A “skilled companion dog” is a service dog trained to work with an individual with a disability under the guidance of a facilitator (typically a parent, spouse or caregiver). Unlike a guide dog or mobility service dog, a skilled companion dog is receiving his commands and praise from the facilitator, not the person with the disability. Louie and Duncan have been together for about five and a half years. For the first year and a half that Louie worked with Duncan, they spent the majority of their waking hours tethered together. Louie’s main job was to prevent Duncan from harming himself through self-injurious behavior and wandering off. Louie has been able to do much more for Duncan in their time together.

Service and therapy dogs can change a person’s life, but this is not a relationship to be undertaken lightly. Not all children react well to service dogs. Provider programs differ greatly in their approaches to matching dogs with owners and should be thoroughly researched. Service dogs will definitely add to the family’s workload, an additional responsibility in time-constrained households. The amount of time and effort it takes a school to accommodate a skilled companion dog should not be underestimated. Without the full support of the school district and the agencies working with the child, all the time, energy and training for the dog may go to waste. Also remember, there will always be a period of adjustment.

Madine is actually owned by Canine Companions for Independence, and there was no upfront charge for her. Duncan waited 18 months for Louie. The cost for Louie was about $15,000—including travel—to bring the dog to his current home in Vermont. Duncan’s parents spent a week of immersion training with the dog in Portland, Oregon, where he’d been raised and trained by Autism Service Dogs of America (ASDA), before bringing him east. Louie then had a couple weeks to acclimate himself before a trainer from ASDA went to Vermont for two additional weeks of onsite work.

Service dogs are investments. Even if you don’t pay an initial fee, costs for their ongoing care must be considered. There are no health insurance policies or public benefits that cover these expenses, although they are tax-deductible. This makes service dogs perfect candidates for coverage by special needs trusts (SNTs).

We can’t imagine Melanie and Duncan without a dog in their lives. Depending upon your circumstances, adding a service dog to your family is an option well worth investigating.

March 31 was a sad but important anniversary.  Seven years ago on that date, Terri Schiavo died.  But not before her husband and parents battled for over 15 years in at least nine courts to decide whether the young Florida woman’s life support would be terminated.  It was a tragic family saga played out on a national stage.  And it could have been avoided.

In counseling clients regarding health-care decision-making, I tell them that Terri Schiavo’s problem was not that she didn’t have the right medical power of attorney document in place (although that would have likely made a difference).  The main problem was that she had not expressed her wishes to friends or family about the kinds of care or treatment she would want if she became terminally ill, with no quality of life, unable to interact with or enjoy her surroundings or loved ones.  No one could come forward and say what Terri would choose under the circumstances of her vegetative state.  So, family were left to fight over the decision.

But here’s the good news – you do not have to wind up in the same situation as Terri Schiavo.  There is planning you can do to express your wishes about end-of-life care and to select the person(s) you trust most to see that your wishes are carried out for care and comfort.  In 2008, April 16 was proclaimed nationally as National Health Care Decisions Day, and Governor Haley Barbour proclaimed its observance in Mississippi.  The purpose of this day is to encourage the public to get their personal plans in place for health-care decision-making.  The vehicle for this planning is the Advance Health Care Directive. This self-explanatory document provides a form in which you can (1) list the person(s) you wish to serve as your health-care agents in making medical treatment and health-care decisions in the event you become unable to do so for yourself, (2) state your own instructions about end-of-life treatment or other medical situations, if you wish, (3) designate your primary physician for purposes of contact regarding your medical history, and (4) make organ donation directions, if you choose.  Once you write out these matters, the Directive can be treated as an expression of your personal instructions and wishes.  This may prevent family conflict and will establish who can make care decisions for you in an hour of need – someone other than a judge!

You can download the Advance Health Care Directive today from the Forms page at the following website:

www.ElderLawMs.com

An April 1, 2010 survey of several studies by Kaiser Health Network made the following findings (among others) about the benefits of such planning:

“One in four elderly Americans require someone else to make decisions about their medical care at the end of their lives, according to a new study in the New England Journal of Medicine.

“The results illustrate the value of people making their wishes known in a living will and designating someone to make treatment decisions for them, the researchers said,” The Associated Press reports.  ”In the study, those who spelled out their preferences in living wills usually got the treatment they wanted.  Only a few wanted heroic measures to prolong their lives.  The researchers said it’s the first accounting of how many of the elderly really end up needing medical decisions made for them.”  (Nano, 3/31).

Also from MedPage Today:  ”Just last week researchers reported on a randomized trial of a comprehensive, hospital-based effort to improve advanced planning for end-of-life care in elderly patients.  It likewise found that planning improved the likelihood that a patient’s wishes would be followed and reduced emotional trauma among family members.  Together, the results add weight to the movement for advance planning in end-of-life care and decision-making.”  (Phend, 3/31).

Hurry, and download your Advance Health Care Directive today!  You may not live forever, you know.

Advances and Setbacks

In 1987 President Ronald Reagan proclaimed March “Developmental Disabilities Awareness Month.” The deinstitutionalization movement of the seventies and early eighties had laid the foundation for significant social change, and the presidential proclamation called upon Americans to provide the “encouragement and opportunities” necessary for people with developmental disabilities to reach their potential.

As those citizens began living within the general community in larger numbers, programs to provide career planning, job coaching and supported employment began to emerge. The idea that individuals with developmental disabilities could become productive members of the workforce was new to many people, and entrenched preconceptions had to be overcome. Advocates recognized a moral imperative to engage individuals with developmental – and other – disabilities. With passage of the Americans with Disabilities Act in 1990, workplace discrimination against people with disabilities became sanctionable.

The expectations of young people with developmental disabilities and their parents began to shift. Productive, self-directed lives within the community increasingly became the goal, and (increasingly) an obtainable goal. At the same time, due to improvements in healthcare, people with developmental disabilities were living longer, leading to questions about the lifestyle of “retirement-age” individuals. In short, the national conversation began to address the full spectrum of services needed for people with disabilities to live secure, fulfilling lives. Passage of the Individuals with Disabilities Education Act (IDEA) in 2004, further cemented the resolve of self-advocates and their supporters. With its guarantees of early intervention, special education and services to transition high schoolers into adulthood, IDEA opened a world of possibilities.

I wish that I could say that, as a result of all these changes, stereotyping has decreased. Some observers might be encouraged by sensitive portrayals of people with disabilities in film, literature and onstage. At the same time, though, bullying of students with special needs has become a serious—and growing—national problem. Stereotypes remain, undoubtedly contributing to the continued high unemployment rate among people with disabilities. Hurtful words are too commonplace, and we are far from free from experiencing incidents of abuse and neglect. Taxpayer-funded programs for people with disabilities, always under pressure, are more at risk in today’s economic environment. Discussions at all levels of government threaten the advances made during the past 25 years. School districts across the country are faced with shrinking budgets, and sometimes they complain about special education mandates. Medicaid, which has funded many employment and community-based residential programs, is under fire.

Yes, a quarter century after the establishment of Developmental Disabilities Awareness Month, the world has changed in important ways. Much, though, remains to challenge us. In the coming years, we’ll need to fight not only for more advances but to retain the accomplishments of past decades. It is a fight in which we must all engage.

The Voice is the e-mail newsletter of The Special Needs Alliance. This installment was written by Special Needs Alliance member Robert B. Fleming, CELA, of Tuscon, Arizona.  He is a partner at Fleming & Curti, PLC.

About this Newsletter: We hope you find this newsletter useful and informative, but it is not the same as legal counsel. A free newsletter is ultimately worth everything it costs you; you rely on it at your own risk. Good legal advice includes a review of all of the facts of your situation, including many that may at first blush seem to you not to matter. The plan it generates is sensitive to your goals and wishes while taking into account a whole panoply of laws, rules and practices, many not published. That is what The Special Needs Alliance is all about. Contact information for a member in your state may be obtained by calling toll-free (877) 572-8472, or by visiting the Special Needs Alliance online. Reprinted with permission of the Special Needs Alliance – www.specialneedsalliance.org.

While we sat a spell during our Friday afternoon tennis outing, my friend Nick told me about the men’s revival he had attended earlier in the week. The preacher had talked on living the Christian life and said: “When you go to the cemetery and look at the headstones, you see two dates – the birth date and the death date. Between these two dates there is a dash. We all live in the dash. And the most important thing is how we live in the dash.” Then early on Saturday morning, we got a call telling us that the sister of a close friend who had battled cancer for the last few years died before dawn – a merciful transit from months of great pain to an eternity of peaceful rest. Much of the rest of the day the world watched as the life of Whitney Houston – some would say a tragically ended life – was remembered in her “home-going” service in her New Jersey hometown church. It all just made me start thinking.

What is the Meaning of Life?

I was once talking with a doctor friend when the phrase “What is the meaning of life?” came up. He said, “Well, if you are asking ‘what is life,’ that’s easy. Life is a sexually transmitted terminal condition.” And you know, that quite accurate definition puts a stark light on this state we call living. We all got here the same way, which makes me think we should be careful not to view or treat one person as more worthy or important than any other. And it doesn’t last forever, so we should consider what we will do with the life we have.

Life Has a Purpose

Just being alive is meaningful, but humans are gifted with the capacity of purpose. We can decide, for whatever reasons, to go down a path and then go that way. I believe the Bible teaches that the primary purpose of life is to live in a relationship with God, our creator, and secondarily to live in harmonious relationship with family and others. This is expressed in the Old Testament commandments to “Love the Lord your God with all your heart, all your soul, all your mind, and all your strength; and love your neighbor as yourself.” Nick said the revival preacher asked, “If you knew you only had 24 hours to live, how and with whom would you spend your money and your time until then?” Answering that question will clarify your purpose and priorities. Why not start with those people and purposes now?

We Can Live Without Purpose

We humans have the capacity for purpose, but we are not compelled to use it. For example, we have the opportunities to purposefully plan for the benefit of our families and others we care about or choose to help. In my professional life, I have come to know this as “estate planning.” However, statistics show that a majority of adults have no plan of any type in place to address the long-term decision-making, financial or health-care needs of themselves or their loved ones. I have told many prospective clients that they may have been living under the following popular delusion: “I plan to live forever; so far, so good!” I remind them that life isn’t forever, so whatever relationships, plans and goal-setting they intend to implement should start now. We have been called into too many situations where a person never got around to doing the planning and, as a result, the family and financial affairs were thrown into chaos and conflict.

Life Has Value to Others

I believe the greatest value of life is the impact it has on others. I recall my grandparents, the Peveys and the Courtneys, as simple farming folk in Copiah County who reared God-fearing children and would have likely chosen the word “humble” to describe themselves. They lived humble, honest and gracious lives. Now they are gone. But theirs are the lives I value more than any of the more prestigious people I have known (even my cousin Eli Manning). Those lives displayed before me values to which I have aspired and are, therefore, appealing as models. Their lives and the times I remember spending with them, and not any piece of furniture or personal item from their estates, are of the greatest value to me.

Life Has Value Because of Others

I have known clients and acquaintances who fought death because they felt they had not yet accomplished their purposes for others in their lives. My friend’s sister cherished her life with her husband, child and family and clung to it and them dearly until she could cling no more – placing an enormous value on her own life because she wanted to make sure the others were going to be okay when it was over. And an elegant lady in her 90s sat in my office and told me, “Mr. Courtney, I have lived too long. Both my husbands are gone, most of my friends are gone, my health is going but not quite gone, and I just don’t think people were intended to live this long.” But she went on with a wry smile to reassure me that she was not considering ending things herself and to say that she perseveres, sustained by faith that God may yet put someone in her path that she can help. Her purpose may not yet be completed.

Summary

Cherish and celebrate life.

Honor the lives of others.

Find your purpose and live it.

Start now (if you haven’t already).

Medicaid, jointly funded by the federal government and individual states, is arguably the most important public benefit available to individuals with disabilities. While eligibility guidelines, services and payment rates vary widely, the federal government requires that all state Medicaid programs pay for physician visits, prescriptions, hospitalization, lab work, x-rays and nursing home care. In addition, all states must provide periodic health screenings and treatment to Medicaid-covered children under the age of six.

Although Medicaid is available only to those having limited income and assets, once an individual with disabilities reaches the age of 18, family assets are no longer considered in determining the eligibility of a child for Medicaid, making it an important consideration in all special needs estate planning.

Any Mississippi resident who receives any payment of Supplemental Security Income (SSI) benefits is automatically eligible for Medicaid services. The income limit is $698 for an individual and the resource (assets) limit is $2,000. Assets and income of the other family members can be “deemed” to a child under age 18 and thereby disqualify children of many families.

In addition, Mississippi (like most states) has established Medicaid “waiver” programs with less stringent income/asset requirements. The most common of these are intended to support the needs of individuals with severe disabilities who are eligible for long-term, institutionalized care, but whose families prefer that they remain in a community setting. Typical services include home aides, day habilitation, family respite and therapeutic services. Mississippi has obtained federal waivers to use Medicaid funds to offer services in “home and community-based” programs designed to help recipients avoid institutionalization. These include: (1) Elderly and Disabled Waiver, which provides respite, adult day care, meals, homemaker and other services for older persons with deficits in at least 3 of the activities of daily living; (2) Physically Handicapped (Independent Living) Waiver, which provides personal care attendant services to physically disabled persons; (3) Intellectually/Developmentally Disabled (ID/DD) Waiver, which provides “day-habilitation”, respite care, attendant care, and speech/physical/occupational therapies to persons who would, without such services, require the level of care in an Intermediate Care Facility for the Mentally Retarded; (4) Assisted Living Waiver, which provides homemaker, attendant care, medication supervision, social and recreational therapies, transportation and other services to residents of certain personal care homes and other congregate living facilities who would otherwise require placement in a nursing facility; and (5) Traumatic Brain Injury/Spinal Cord Injury Waiver, which provides services to persons with traumatic brain or spinal cord injuries necessary to help them avoid institutionalization. There are other eligibility criteria, services and population limitations on these groups. The monthly income limit for these groups is generally the nursing home income limit ($2,094 in 2012) for an individual. The countable resource (assets) limit is $4,000 for the disabled person and $113,640 for the non-disabled spouse.

One of the most important features of a “special needs trust” is that, if the trust is properly drafted and administered, the assets and money in the trust will not be considered resources of the disabled beneficiary, thereby protecting his or her eligibility for SSI and/or Medicaid benefits.

Waiver waiting lists are notoriously long, and it can take years for an individual to obtain services. Parents should, therefore, place their child on appropriate waiver lists as early as possible.

The current tone of the budget discussions taking place at all levels of government poses a serious threat to Medicaid in general. It appears inevitable that services will be trimmed and that waiver lists will continue to grow. This is ironic, since community-based care is more economical than the institutional living which is its alternative.

This troubling situation underlines the importance of early family planning for the financial security of loved ones with disabilities. Establishing a third party special needs trust (SNT) to which family and friends can contribute funds without endangering a child’s eligibility for government programs is a means of supplementing bare-necessity services that are likely to be even more modest in the future.

Social Security is in the process of shifting away from paper checks in favor of electronic benefits. This means that with a few narrow exceptions, individuals receiving Social Security Retirement, Disability, and SSI benefits will soon be required to get their benefits either via direct deposit or on a prepaid debit card called a Direct Express Card. New recipients as of May 1, 2011, have been required to choose direct deposit or Direct Express. Current recipients still getting a paper check will be required to switch by March 1, 2013.

What is the Direct Express Card?

Recipients have the option to receive their benefits on the Direct Express Card. It bears the MasterCard logo and operates like any other prepaid debit card. Current recipients getting paper checks can sign up at any time, by phone, in any Social Security Administration (SSA) office, or online at http://www.usdirectexpress.com/edcfdtclient/index.html.  It can be used for free or at far lower cost than other prepaid debit cards.

Trouble Activating Direct Express Cards

Some advocates report seeing clients who have had problems activating their Direct Express Cards. This can prevent individuals from accessing their needed benefits, in some cases for months at a time. Once a cardholder has tried three times to activate her card, she will be “locked out” of the phone system and prevented from trying again. It can be extremely difficult to get help from customer service to activate the Direct Express Card.

Who to Contact About Problems

The National Consumer Law Center (www.nclc.org) and Community Legal Services of Philadelphia are working to improve customer service for the Direct Express Card so that Social Security and SSI recipients are not prevented from accessing their needed benefits. If you have seen a problem with Direct Express, please share your stories with Rebecca Vallas (rvallas@clsphila.org), Staff Attorney at Community Legal Services.

In his book “The New Knowledge of Dog Behavior,” originally published in 1963, Clarence Pfaffenberg tells how he was assigned the task of finding the ideal puppy to train as a guide dog for Guide Dogs for the Blind, Inc. in California. He states that “we can sometimes study our own behavior best by studying the behavior of dogs, especially puppies. This is true because a dog’s behavior toward his human family (owners) is so much like that of a child toward his own family.” He goes on to show that our similarities have allowed man and dog to live together for thousands of years, and these similarities make the study of dog behavior so valuable in studying human behavior. According to Pfaffenberg, a dog asks three questions about any new thing it encounters: (1) Will it hurt me? (2) Can I eat it? (3) Can I play with it? This indeed sounds much like how a child encounters the world.

While we and our dogs may act a lot alike, the author wrote that “it is our dissimilarities which have brought man and dog together and kept them together as a team so very long. . . Because a dog is willing, even eager, to assist man, his ability to do things we cannot do (or, if we can do them, to do them better than man can) has enabled man to use a dog’s capabilities as a projection of his own or, in the case of a Guide Dog, to substitute for an ability he has lost.”

I hope you have met Gus, my Certified Therapy Dog, on our website Staff page before (or at one of the events we go to regularly). This Musing is not about Gus, though. I hope you will go to our website, www.ElderLawMS.com, and click on the Staff page to meet my daughter, Melanie, and our new four-legged staff member, Madine. Madine is Melanie’s Skilled Service Dog from Canine Companions for Independence (CCI) in Orlando, Florida. They have been a team since November 2007. As you will see, Melanie is a wheelchair user, but Madine’s capabilities and unlimited energy and desire to please provide Melanie with a great substitute for her limitations. In her training at the CCI Center in Orlando, Madine learned 42 commands that make her quite useful to a person with disabilities. In a two-week “team training” session, the CCI staff and trainers observed humans and dogs interact, assessed home and work situations, and placed eleven dogs with children and adults based on needs and capabilities. All we can say is that Madine and Melanie have found themselves to be a wonderful team.

The process of breeding, training and placing service dogs and companion dogs to “enable” disabled children and adults is not cheap, but the rewards are incalculable. If you are looking for a worthwhile enterprise to make a contribution to that will expand the horizons of possibility for a person with a disability, or to learn more about service and companion dogs, go to:

www.cci.org

Each year as we approach the holiday season, we receive questions from our clients as to how grandparents and other relatives can make gifts to children with special needs without creating problems for government benefits. These conversations don’t involve gifts of toys and other items of personal property, since these items are typically excluded as “exempt” resources and have no impact on public benefits. Instead, the questions usually involve how grandparents and other family members might make gifts of cash or other financial assets.

Most of our clients are informed enough to know that a direct gift of cash is almost always a bad idea. In fact, the challenge often lies not in the discussion of the type of gift, but rather in determining how best to raise the topic in the first place. Indeed, discussions of money can often be awkward and uncomfortable for both sides.

In this issue of The Voice, we thought it might be helpful if we wrote a letter to Grandma and Grandpa on behalf of the grandchild with special needs, in hope that it may facilitate a more detailed discussion with those who are inclined to be generous.

Dear Grandma and Grandpa:

Thank you so much for thinking about me again at this time of year. I know how lucky I am to have such generous family and friends. I am writing this letter to you because sometimes things that are done with the best intentions can result in unintended problems. Sometimes those problems occur immediately, but in many cases they don’t happen until many years later.

I understand that you are concerned that I may not be able to work and support myself when I get older and that you would like to provide some financial assistance to help make it easier for me when that day comes. I want to explain some of the things that can happen when these acts of generosity are carried out for the right reasons, but in the wrong way.

Counting Your Nickels

You probably know that I get special help because of my disability. Sometimes that help comes in the form of a check each month, and sometimes that help comes in the form of government funded insurance to pay for social workers, therapists, and other aides that are not available through the school district or through mom and dad’s health insurance. These programs have very strict limits on what I can own and what I can earn. When someone gives me money or opens an account in my name, I have to tell the government that I have assets in my name (even if I’m too young or incapable of spending it). When that happens, it puts my benefits at risk.

Delaying (not avoiding) the Problem

You might be thinking that a safe way to make gifts is to open an account which is not available to me until I reach 18 or 21. This is partially true, because some government programs will disregard these accounts until I reach the age when the account will be put into my name. More often than not, however, these accounts create significant complications in the future, often involving additional time, effort and expense at precisely the time when you thought the money would be available to help.

For example, a Uniform Transfers to Minors Act (UTMA) account becomes my property when I reach the age of 18 or 21. This occurs automatically, regardless of whether I am participating in one of those means tested government programs, and even if I am not capable (because of my disability) of managing that money. When this happens, I am really stuck. On the one hand, by law the money is considered mine when the account terminates on my 18th or 21st birthday. This means I will likely lose my Supplemental Security Income (SSI), Medicaid and other government benefit programs as of that date. Yet, at the same time, my disability may prevent me from making my own decisions with the money, so I may not be capable of taking any steps in order to protect my eligibility for benefits. In many cases I will need to hire a lawyer in order to get court permission to put the money in a different type of account, usually a type of “first party supplemental (special) needs trust” account. Depending on the amount in the account, I could end up with quite a bit less than you originally intended once the costs and expenses of the proceeding have been paid. In addition, any funds remaining in that trust at my death would have to first reimburse the government for any services it has paid on my account through the Medicaid program before it could pass to anyone else (your other grandchildren, for example). I know you wouldn’t want that.

Words Matter

I know that you have been buying savings bonds for me from the day I was born. Sometimes you put my name on the bond, sometimes you put both my parent’s and my names on the bond, and sometimes you put my parent’s name on the bond, “payable on death” to me. These bonds can create the same types of problems that a Uniform Transfers to Minors Act account can create. At some point they will be countable in determining my continuing eligibility for one of these really important programs, and I may not be capable of taking any steps to protect the bonds without the assistance of a lawyer and the permission of a judge.

The Unlucky Beneficiary

Maybe you were thinking that you can avoid some of these problems by waiting until the end of your life before the property is given to me, perhaps by naming me as a beneficiary on a life insurance policy, an annuity, or even a small retirement account. But remember that those proceeds are available (and countable) to me when you die if I am the named beneficiary. Just as with the Uniform Transfers to Minors Act account, the government benefit programs will count any assets that come to me by beneficiary designation.

Hoping for the Best, but…

While it may be difficult for you (and for me) to admit, it could turn out that I will not be ready to manage money when I turn 18 regardless of possible concerns with government benefits. We both know how difficult it is to predict how any young child may act when he or she reaches adulthood. I may be able to read and write, have conversations, go to school and hold down a job, but I may simply be unable (or unwilling) to make good decisions with my money. I may spend it irresponsibly, I may give it away, or (worse yet) I may not be able to tell when someone is taking advantage of me. Government benefits aside, it just may not be a great idea for me to have direct access to a lot of money when I get older.

What Can You Do?

There are ways that you can help me. Depending on the size of the gift, it may be easiest to simply give the gift to my parents and ask them to hold it for me. So long as the bank account is in their name and uses one of their social security numbers, it won’t create a problem with my government benefits. For smaller gifts, this can be the best solution.

If you think that I may one day go on to higher education, you could open a “529 Account” for my benefit. These accounts earn money on a tax free basis, and have other tax advantages too. But the most important thing is that the accounts are considered owned by the person holding the money (i.e., the “owner” of the account), and not the person who might be using the money to pay for education expenses at some point in the future. Some grandparents open these accounts in the name of their children (i.e., the parent of the child with special needs). If it turns out that I’m not able to go to school, the money could be used for one of your other grandchildren who will have that opportunity. Your financial advisor can help you set up one of these accounts (although you might want to check with my parents’ special needs trust lawyer to be sure the account is titled correctly, and that the government benefit program rules which deal with these types of accounts haven’t changed).

It may be that my parents have done their estate planning and have already created a “supplemental (special) needs trust” for me as part of that plan. These trusts are specifically designed to hold money for people with special needs, and can provide the best of both worlds: a trustee is appointed to manage the money (sometimes a parent will serve as the trustee), and the trust is “exempt” in determining eligibility for most government benefit programs (i.e., the government won’t treat the money as if I own it). You could also name the trust as the beneficiary of a life insurance policy or retirement account. Just remember that if you are thinking about a significant sum of money, it’s important for you to talk to a lawyer who has experience working with these types of trusts.

And, of course, you could always buy me some toys…

But In The End, What I’m Really Thankful For…

…is knowing that you are thinking about me this holiday season.

***********************************

The Voice is the e-mail newsletter of the Special Needs Alliance. This installment was written by Special Needs Alliance member Edward Wilcenski, a founding partner of the law firm of Wilcenski & Pleat PLLC in Clifton Park, New York. He practices in the areas of Special Needs Planning, Elder Law, and Trust and Estate Planning and Administration. Ed is a past President of the Special Needs Alliance, and writes and lectures frequently on issues affecting individuals with disabilities and their families

Long-time readers of The Voice know that we rarely repeat an issue. In the world of disability there are many important topics to choose from, so the challenge has really been in deciding which topics are of most interest to our readers rather than finding something interesting in the first place. Because the Voice has many new readers each year, we know that many of our current readers may have missed this article when it first appeared in November of 2010. With this in mind, we’ve decided to reprint this article written by Edward V. Wilcenski, hoping that it may catch newer readers before they make their final decisions on how to make holiday gifts to their family members and friends with disabilities.

About this Newsletter: We hope you find this newsletter useful and informative, but it is not the same as legal counsel. A free newsletter is ultimately worth everything it costs you; you rely on it at your own risk. Good legal advice includes a review of all of the facts of your situation, including many that may at first blush seem to you not to matter. The plan it generates is sensitive to your goals and wishes while taking into account a whole panoply of laws, rules and practices, many not published. That is what The Special Needs Alliance is all about. Contact information for a member in your state may be obtained by calling toll-free (877) 572-8472, or by visiting the Special Needs Alliance online.   Reprinted with permission of the Special Needs Alliance – www.specialneedsalliance.org.