Photo by Lisa Wiltse of the Sydney Morning Herald

This is a reprint of a blog post originally published November 7, 2008.  Although almost 2 years have passed, many parents of disabled children still live in fear of what will happen when they can no longer serve as primary caregiver for their child.  We hope that reprinting this blog post will help  these parents understand their options for the future, and bring them some peace of mind.

My wife and I have almost reached the empty-nester stage. We look forward to that event with excitement, and a little anxiety too. We have raised four children, ranging in age from 32 to 17. After such a long run in parenting minors, it’s time to move on to that more senior stage referred to as being an empty-nester.

Not everyone becomes an empty-nester. And although we sometimes joke about the child who “failed to launch” due to the inability to get a career, there’s another group of parents who will never know the joy of seeing their child be fully self-supporting. In my office it is not uncommon for me to sit across the table from an 83 year old parent who is still the primary caregiver for a child who is chronically disabled. Those parents live in dread of the day that they will die and their children may survive them and face a future without the loving protection of a parent.

This is the first time in human history that parents face the possibility of having their chronically disabled children actually outlive them. Prior to the introduction of antibiotics and many other great advances in health care, chronically disabled children routinely died at a young age. But now, even parents who have lived to become the frail elderly themselves may have chronically disabled children who are themselves senior citizens, but who are still at home being cared for by their parents. In fact, sometimes when we assist families in bringing in a professional caregiver for the aged parents, those same caregivers are providing necessary services to the child with the disability, as well. This raises new challenges for those parents and their children.

This type of disability is really quite common. “Developmental disabilities” are severe chronic conditions caused by mental and/or physical impairments. Individuals affected by such challenges may be so profoundly impacted that they will never be able to function independently. Most of these physical and mental issues are in evidence long before a child reaches the age of 22. These disabilities will last the lifetime of the affected person.

So how can a parent be assured that a disabled child will be taken care of after the parent is gone? Some attorneys will recommend that you leave everything to another, non-disabled child, to care for the disabled sibling. This passing of the torch is unfair and in many ways ill-advised. Far better is the creation of a special needs trust specifically for the benefit of your disabled child. Click here to learn more about special needs trusts, and discover exactly why “passing the torch” is a bad idea.

Atty Brian Rubin and his son Mitch

He looked directly at me and softly said, “Every day I pray ‘the parent’s prayer’—that Mitchell has a long, healthy life, but that Linda and I live just one moment longer, so that no one else ever has to take on the enormous responsibility of caring for our special needs child.”

I was interviewing attorney Brian Rubin of Buffalo Grove, Illinois, who focuses on estate planning and advocacy for clients and families who struggle to find the right answers for their child with special needs.

I recently met Brian when I was invited to join the Special Needs Alliance (SNA).  My own law practice is focused on serving seniors who have either a long-term illness or an adult child with a disability.

He went on to tell me, “My adult life started out fairly normally. After college, I  worked for a large CPA firm, then went to law school at night, and worked for the IRS by day.  I have always had to wear more than one hat.”

Brian, and his wife Linda, never planned to have a law firm which focuses on Special Needs Future Planning—but life often takes an unexpected turn.  In January of 1981, their son Mitchell was born.  When Mitch was five months old, Linda told Brian, “There is a problem.”  Brian says the truth of that statement was the beginning of his going through “the stages of special needs grief”:  denial, self-blame, and doctor-hopping.  Mitch has autism, among other diagnosed special needs.  It soon became apparent that Brian needed to quit his downtown Chicago law practice and stay closer to home.  He also wanted to provide appropriate legal guidance and advocacy for his family and others who faced the same issues.  “In those days, almost no one was doing any special needs trusts and benefits planning.  I was one of the pioneers in Illinois.”

Brian struggled to balance the demands of a law firm and his passion to serve the community of the disabled from 1987-2001.

When Mitch reached 18 years of age in 1999 and became eligible for health care through Medicaid, Brian began thinking about opening a law firm which would be 100% devoted to the laws, regulations, and benefits that both frustrate and support clients with disabilities and their families.  Brian opened the doors of The Law Offices of Brian Rubin and Associates in 2001.  The firm provides more than just estate planning and special needs trusts.  Brian says, “Illinois has a very splintered benefit system.  There is no single door of entry, so families are constantly hitting roadblocks.  For example, our son Mitchell’s area of autism does not specifically fit in any one legally defined area.  He needs a variety of services, but no one agency supplies them as one package.  It’s my job as attorney and dad to discover how to get Mitchell the benefits that he needs.  We provide that same type of advocacy for our clients.”

He further explained, “We have found that the government does not tell people the whole story.  Our job as legal advocates is to tell the whole story and to help get appropriate services and residential environments.  We cannot do everything—but we act as the quarterback to get the financial advisor, psychiatrist, health care professionals, education providers, and caseworkers to collaborate to achieve the needed results.”

In closing, Brian shared this: “Mitchell has allowed me, Linda, “big sister/assistant mom” Nicole, and “little/big brother” Benjamin to better appreciate what’s truly important in life… and what is not so important.”

Brian Rubin has created a website (www.brianrubin.com) which is filled with helpful information.  In addition, he makes public presentations frequently throughout the Chicago metropolitan area and Illinois.

The Rubin Family: Benjamin, Mitch, and Brian in back; Nicole and Linda in front

A number of times I have had clients tell me that they love their adult children, but  they have a child who has chosen a destructive lifestyle.  Sometimes it’s a mental health issue, or sometimes it’s just a matter of making very bad choices.  These parents do not want to abandon any of their children—but they also do not want to give money to fuel the fire that is consuming their child.  They come to me and ask me what to do.  These are not persons with a legally defined disability—but they will squander all of their inheritance unless their parents find a way to provide “lifetime love and protection” over estate assets.  The answer is what I call the Lifetime Love and Protection Trust (LPT).

A Love and Protection Trust is designed to be a legal tool to provide protection, motivation, and encouragement for an adult child who is unable to make careful and supportive decisions with his or her money.  The LPT works to ensure that your investment in your adult child is used to further your caring purposes, positive values, and enduring concerns for his or her well-being.

A professional trustee will follow your written trust instructions and safeguard your property to benefit your child.  Trained investment professionals will safeguard the money and work to maximize a reasonable and profitable return on the assets that you have left to be invested.  By law and by the trust document itself, the trustee must make prudent and intelligent decisions to protect your child and your trust monies.

Unfortunately, it happens all too often that adult children squander their entire inheritance unless you take control and help them by making a final gift of love and protection by using a lifetime trust.  The LPT prevents an adult child from foolishly spending, wasting, and losing your hard-earned estate.  Your investment in your child is protected from creditors, failed marriages, and other predators.

Some adult children consistently make destructive choices and therefore are extremely vulnerable to creditor lawsuits and many other types of legal claims.  An LPT can be designed to discourage substance abuse and to provide for the special needs of your adult child.  You can and should build protective walls around the legacy that you have chosen to leave your child.

Build a fortress with this trust.  At its most basic, a love and protection trust will be there for your child long after you are no longer able to be directly involved.  Your legacy of love, protection, and sound investment management will give your adult child the best chance to still have money available if and when he or she eventually chooses to seek help to make a positive life transformation.

“How do you grow up to become Santa Claus?” I innocently asked the white-bearded man.  Laying a finger aside of his nose, he looked at me gently and told his story.

“My birth name is John Scheuch, and Christmas 2009 will be my 34th year as Santa Claus.  Being Santa is a multiple-generation calling—my father, grandfather, stepfather, and uncle have all donned the role.  In 1975, my mother (who knew that I yearned to be Santa) gave me my first custom-tailored suit.  But in those days I had a couple of challenges.  First, nobody recognizes a young Santa with dark hair and beard.  Second, I didn’t know where to go to learn all of Santa’s secrets!  Being Santa is not a “guy-group” activity; you can’t just go hang out with a bunch of Santas to learn—and at the time I couldn’t find a mentor.  Nonetheless, I had a calling to be Santa, so I decided to just start—after all, I had my suit…  So I began to quietly share with a few friends that I was Santa Claus.  One friend asked if I could come and visit his four-year-old son, Rex.  When I agreed, he added, “When you visit, could you please tell Rex to turn out the bathroom light at night?”  That was my first “ah-ha moment” as Santa, because a real Santa knows everything—but how can he, without a little help from the parents?

That was 34 years ago, and I am now visiting the children and grandchildren of those I first saw.  I keep a file on every child I have ever visited.  Now when I see a child whose parents I knew when they were children, I will often say, “You know, Mikey, when your daddy was your age he wanted me to bring him a red Tonka truck.”  People are amazed that Santa not only knows all but he remembers everything about them too.

Let me tell you about a call that changed my life. One night, I received a mysterious call from a man who identified himself as the Chief Elf of “The Elves of Christmas Present.”  The Chief Elf asked me several questions:  “Do you really look like Santa?  Do you work on Christmas Eve?  Are you afraid to fly?”  He then told me about a gravely ill child who had asked her parents to help her to go to the North Pole, see Santa Claus, and help him deliver Christmas presents.  The Chief Elf asked me to help make that wish come true.  I told him, “I’m your man!”

The afternoon of Christmas Eve arrived and I was getting ready.  Suddenly the Chief Elf called again, and with a broken voice he said, “I have bad news…  She died this afternoon…  But her grieving parents want us to go on and take her younger brother.”  Later that night I met a shattered family and a wide-eyed little boy. We grabbed my bag of toys and jumped into a helicopter. Together, we flew through a Kansas Christmas night, delivering Christmas gifts.

That moment caused me to want to devote myself to serving children with the greatest needs—children who are terminally ill, children in hospice, and children with a loved one who may be dying.  My passion to serve has led me to become Executive Director of Santa America. It’s a non-profit, volunteer organization that brings love, hope, and joy to special children and their families.”

Help Santa John and Santa America to fulfill their mission.  Please go to their website, www.Santa-America.org, and make a contribution to support them in their never-ending work of bringing Santa to exceptional children who are in crisis.

I will never take Santa Claus for granted again! Most of us grew up with Santa Claus as a beloved Christmas icon. Maybe you have one or two special Santa memories that you cherish. Did you take your kids to visit Santa and then tuck the photo away as a life-long Christmas treasure?  I sure did! I have always taken it all for granted. I never realized how hard it is for parents of a special needs child to give their kids a Santa moment.

At the July 2009, Autism Society of America conference, I met Santa John of Santa America whose mission is to bring “Unconditional Love, Hope and Joy wrapped in a warm Santa hug to special needs children and their families 365 days a year!”  (see Compassionate Santa Services.) Santa America and the Autism Society of America announced a “gentle alliance” that will help children affected by autism and their families have a rewarding experience with Santa for the holiday season.  “Autism is a complex neurodevelopment disability that typically appears in the first two years of life and affects a person’s ability to communicate and interact with others.”

Santa John told me, “Children dealing with Autism cannot tolerate the noise, crowds, and the wait involved in a Santa visit. Trying to take kids with autism spectrum disorders (ASD) to see Santa at the mall is total sensory overload. As the child and his parent struggle to deal with the situation some other well-meaning adult scowl and say sarcastically, ‘Can’t you control your child?’ The true answer is no! They really can not control their ASD child.  Even if  parents try their best to give their child what every other normal family enjoys as an  American Christmas Tradition, the parents and the child are often humiliated and rejected.”

Santa-America tenderly serves three groups of very special children:

• Children in hospice or children with parents or grandparents in hospice; and
• Children with chronic pediatric conditions  or in palliative care; and
• Children suffering post traumatic stress due to abuse, violence, or other trauma.

I asked how Santa ‘knows all’ when dealing with such challenging situations. Santa John warmly shared that every Santa America Santa is given very careful training. He learns how to:

• Identify a child on the autism spectrum
• Learn to ‘tone it down’ to avoid causing a negative response
• Learn to use story-telling cards and relaxing techniques

Last Christmas, Santa John and the Kansas City-Autism Society Heartland Chapter gave over 50 families an opportunity to meet Santa and have photos taken with him. Santa John told me that, “visits were scheduled with 3-4 families every 30 minutes. Each family met with Santa in a private room next to a cozy fireplace. Santa had his Book of Good Boys and Girls with a page for each child listing their birthday, friends, teachers, and what they wanted for Christmas. Most importantly, the families knew that everyone there would be accepting of any behavioral differences their child might have.”

As I listened to this kind and caring man share his compassion for these special kids, I realized that he is a Santa who is a model of the true meaning of Christmas. Santa John says that what Santa America needs most is for us all to donate to help Santas across our nation deliver gifts of Love, Hope, and Joy.  Click here to donate.

Santa John’s amazing personal story will be the subject of next week’s blog.

Artwork by Rhiannon Richardson of the Neighborhood Center of the Arts

What do you do if you’re an elderly parent still caring for a disabled child who can’t care for him or herself?  Last week I wrote about “empty nesters” who have never really had an empty nest. These are parents of children with disabilities such as autism, cerebral palsy, hearing loss, mental retardation, vision impairment, muscular dystrophy, genetic and chromosomal disorders, Down’s syndrome, and fetal alcohol syndrome, to name just a few.  Some disabilities are apparent at birth, and others are caused by accidents or manifest themselves as mental illness later in life, but the end result is the same:  The child is being cared for by a loving parent who worries about who will provide care for that child once the parent is gone.

The most common advice of the attorney who does not practice in the area of special needs trust planning (or what we prefer to call Tender Loving Care (TLC) Trusts) has been for the parent to disinherit the child.  Disinherit means to make sure you leave that disabled child with absolutely no allocation of money directly.  This gives the simplistic idea that one should just leave extra money to one of the other children who will provide care for the disabled child and money management.  Even in the best of families, this is usually a disastrous idea for the following reasons:

• It’s extremely difficult for an individual who receives extra money not to comingle that money with their own, and eventually treat it as their own.  That money would become available in the event that the healthy child becomes divorced or is otherwise subject to loss to a creditor.
• In many families the dynamic is such that the healthy children have some anger or resentment toward the disabled child because that sibling got more attention.  Thus, healthy children may not want the role of caregiver and banker for their disabled sibling.
• And most unfairly, leaving money to one child for disbursement to another child puts a target on the back of the healthy child, in that all complaints and concerns about money will be directed to that individual.

It is the job of the elder law and special needs attorney to assist families like this in developing proper planning so that we can help the parents to create a better way to manage both money and care after they are gone.

A TLC Trust is designed to work in partnership with any public benefits such as Supplemental Security Income and Medicaid.  It is a way for parents to leave money for the needs of their child beyond what public benefits would pay.  A TLC Trust can provide supplemental care for recreation, social activities, pets, special therapies, entertainment, and even vacation opportunities for a child by the use of trust money.  A TLC Trust can also purchase professional care management, which can enhance not only the dignity, but the quality of life of a disabled child. The TLC Trust is a far more loving and caring solution to the challenge of providing for a child with special needs.

Please don’t disinherit your child with a disability; contact an elder law attorney who can assist you in designing a custom plan to meet the very special needs of your child, so that he or she can be given tender loving care after you have passed away.

Photo by Lisa Wiltse of the Sydney Morning Herald

My wife and I have almost reached the empty-nester stage.  We look forward to that event with excitement, and a little anxiety too.  We have raised four children, ranging in age from 32 to 17.  After such a long run in parenting minors, it’s time to move on to that more senior stage referred to as being an empty-nester.

Not everyone becomes an empty-nester.  And although we sometimes joke about the child who “failed to launch” due to the inability to get a career, there’s another group of parents who will never know the joy of seeing their child be fully self-supporting.  In my office it is not uncommon for me to sit across the table from an 83 year old parent who is still the primary caregiver for a child who is chronically disabled.  Those parents live in dread of the day that they will die and their children may survive them and face a future without the loving protection of a parent.

This is the first time in human history that parents face the possibility of having their chronically disabled children actually outlive them.  Prior to the introduction of antibiotics and many other great advances in health care, chronically disabled children routinely died at a young age.  But now, even parents who have lived to become the frail elderly themselves may have chronically disabled children who are themselves senior citizens, but who are still at home being cared for by their parents.  In fact, sometimes when we assist families in bringing in a professional caregiver for the aged parents, those same caregivers are providing necessary services to the child with the disability, as well.  This raises new challenges for those parents and their children.

This type of disability is really quite common.  “Developmental disabilities” are severe chronic conditions caused by mental and/or physical impairments.  Individuals affected by such challenges may be so profoundly impacted that they will never be able to function independently.  Most of these physical and mental issues are in evidence long before a child reaches the age of 22.  These disabilities will last the lifetime of the affected person.

So how can a parent be assured that a disabled child will be taken care of after the parent is gone?  Some attorneys will recommend that you leave everything to another, non-disabled child, to care for the disabled sibling.  This passing of the torch is unfair and in many ways ill-advised. Far better is the creation of a special needs trust specifically for the benefit of your disabled child.  Check back next week to learn more about special needs trusts, and discover exactly why “passing the torch” is a bad idea.