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Special Needs Planning: For Really Special People

Updated on October 30, 2010

Special Needs Kids, A Special Kind of Love

Most of us don't have to look very far to find a family displaying a special kind of love for one or more of their children, special children - with special needs.  Neighbors, friends, siblings, co-workers - maybe even you - we are all close to families with kids managing an affliction we would never wish upon anyone - let alone some we love so dearly.

A generation or so in the past, these children might have lived cloistered lives.  They were often hidden from public view, either out of embarrassment of the family to avoid embarrassment to the child or perhaps even to those who might witness the child's difficulties.

But in 2010, things are different.  Autism, cerebal palsey, Downs' Syndrome, quadraplegia - whatever a child suffers, we open up to the world before him so he can also see the world around.  We are learning to understand their needs - our needs - as a blessing much more that it is a curse.  

It's hardly fair for a man with three children of able mind and body to assume much understanding of the family that provides constant, daily care to a child who is unable to provide such care for himself.  And it is surely impossible to understand how that family copes when the child becomes an adult and still needs every bit as much care as when she was a child - what then?

A Family Story

About the time my father was born, just before World War II, his Aunt Esther gave birth to a beautiful baby girl named Judy. Truly, one of the most indelible memories of my life will always be the last time I saw Judy. It was probably 10-15 years ago, though it seems so fresh and recent.

Judy's father, Don, my great Uncle, was a wonderful guy. Upbeat, but unpretentious. My family was close when I was growing up - my grandfather had eight brothers and sisters, all living in the same small, midwestern town. I have nothing but good memories of my extended family as a kid - every person in the family tree was enjoyable to be around. Some were cantankerous, others on the quieter side, but all were friendly, loving and warm.

But there was only one Don - and one Judy. One of the things I have always treasured and admired most about my Dad, and his Dad - was the way they both treated and acted about Judy. As a kid, I can recall that I felt very uncomfortable around Judy - but they never did.

Judy was different. Born with an unidentified defect, she grew to a pretty normal height - over five feet tall - but probably never weighed more than 85 pounds at any time in her life. Her speech capacity was very limited, and she was completely unable to control the constant dribbling of saliva from her mouth. She had little ability to move her arms, and almost no use of her hands. To my knoweldge, Judy never walked.

But in our family, that did not keep her from going places. At every family gathering, Judy was there. Not sitting in a wheelchair, and never needing braces, or any device to make her mobile, Uncle Don was all she needed. Every place Judy ever went in her life, she went in Don's arms. As a child (that was before I was born), and all through her adult life, Don carried his child wherever she needed to go.

Not once did I ever see him do it without a smile. No complaints, no anger, and never an unkind word about anyone. He never let Judy.s condition get him down. I have to say, if there would ever be a vote for father of the 20th Century, Don should be the runaway winner. There were lots of great dads in my family, including my own, but there was only one Don.

The last time I saw them, I saw one of the most touching things I will ever witness - no matter how long I live. My grandfather was in his late 80's by this time and Don and Esther were very close to his age as well. I joined my grandfather and his wife for dinner at their little country home, and Don, Esther and Judy stopped by to say hello.

By this time, sadly, Judy was not the only special needs person in the family. Esther was then afflicted with Alzheimers', and it had reached an advanced stage. My grandfather went to the door as he always did when a guest arrived, and held the door open. A moment later, in walked Don, with Judy over one shoulder, and Esther clinging tightly to his opposite arm.

They came in to the living room and sat down on the couch - Don in the middle, Judy to his right, and Esther on his left. Esther intermittently recognized Don, and then didn't. One minute she would ask him what was for dinner, the next she minute became afraid and didn't know who he was. A minute later again, she asked about dinner a second, or a third or a fourth time.

Judy sat on the other side, propped against Don's shoulder, and would laugh and giggle from time to time when either her dad or my grandfather would say something funny, especially to her.

In all this, Don maintained the same upbeat look, and carried on conversation with the rest of us, without missing a beat.

As a kid, I would watch a great athlete achieve some feat of strength and then dream of doing even more myself. As a young man, I observed entrepreneurs turning bootstrapped ideas into billion dollar enterprises and prayed I could do the same. But on that Sunday afternoon in Lewis, IN not so many years ago - I saw someone doing something I knew I was better than anything I had ever done, or probably ever would do.

My Uncle Don's love for his wife and daughter was so incredibly unconditional it was all I could think about as we sat there, and as I drove home later that afternoon. it stuck with me and it always will.

But there's more to this story...

The Special Needs Trust

Today, a family with special needs kids (or adults) is given a host of options that were barely - or not - available a generation ago.  Between the additional coverage offered under Medicaid, the provisions of the Americans with Disabilities Act, and the Individuals with Disabilities Education Act, the government programs that reach out to children and families in need are substantial.

Even more important, perhaps, as the economy limits the ability of government to provide for some levels of service it might have in the past, the Internal Revenue Code, and the laws of most states, provide for tax breaks and tax protection for families supporting a special needs person for whatever needs they have.

A Special Needs Trust is generally best suited for families with relatively significant wealth - perhaps a net worth of over $500,000.  But this is not necessarily true.  Many times grandparents (or even certain grants to families with special needs) can fund such a trust, or even if that is not the case, the family can use the trust to enable medical care for the child, or fund it through life insurance - which is a very common means for parents to provide for even healthy children. 

Setting up a trust begins with a good conversation with a knowledgeable planner and attorney about the needs of the child, the families present financial situation and expected future need.  From there, the attorney can draft the appropriate trust, tailoring to the families abilities and needs, so that it will be in place, and yet be flexible over the course of the child's life.

Of course, planning for a child with special needs is not about eliminating provision for the other children in the family.  Your attorney should carefully advise you regarding the options you have with respect to combining or dividing the ultimate resources that will pass to your heirs.

Be sure to consult with an advisor and attorney who is knowledgeable in this area of law, and is also very sympathetic to your families' needs.

If you're interested in more information on special needs planning or special needs trusts, please contact me, Andrew Thompson, at the Thompson Law Office (877) 365-1776.  


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      masmasika 7 years ago

      Very touching story. And a great way of showing real and unconditional love. Great hub.