All children are special.  The thought that a child may have to survive on his or her own before they are ready is every parent’s worst fear; it’s what keeps many parents up at night, and what brings many parents into our office asking about trusts, guardians, and estate plans. For parents of special children, the fear of leaving their child unprepared is magnified, because parents of certain children, don’t know if their child will ever be able to fully support themselves—even when they are well into adulthood.

As many of you know, when I was 5 years old and my sister was 4, my father died.  Not long after, my mother was diagnosed with Lou Gehrig’s disease (Amyotrophic lateral sclerosis, or ALS).  ALS is a tragic, crippling disease, and my mother became a quadriplegic within 24 months.  She was admitted to the hospital for years at a time, and my sister and I were shuffled back and forth, from relative to relative, because there was no one to take care of us.  One of my mother’s sisters refused to take us in, and recommended we be committed to the State of New York, to foster care.  We had no physical or mental challenges…but we were still special children.  We were impoverished, unwanted and alone.

If anyone would have told my mother when we were born that in a few short years she would be a widow and confined to a wheelchair (and later a bed), and her babies would be alone, she would have told them that they were nuts.   She and my father had a huge family and she believed any one of a number of people would willingly step forward to care for us with love.  Unfortunately, no one did step forward and therefore she and my father never prepared for this eventuality.   As parents they had responsibilities, but they did not prepare effectively for our needs and welfare.  I say this point with no anger or acrimony.  I love my parents very much.   They believed however, this nightmare could never happen to them.

We as parents have a singular responsibility to insure that our children are cared for physically and financially, if we cannot be there for them.  One way to help ensure that your special child will be taken care of—even when you can’t be there anymore—is to create a supplemental needs trust (SNL). In fact, a supplemental needs trust is almost essential for any child (or adult) who is orphaned or who may rely on government assistance for some, or all, of his or her life.

As this article in the Wall Street Journal points out, the sooner you get a financial plan (and a supplemental needs trust) in place, the better for your child. A supplemental needs trust (or SNT) “typically will hold funds to be used solely for the child, usually to cover out-of-pocket costs related to the child’s care and living expenses, but the money won’t be in his or her name… and that’s important.”  Otherwise the parents of the special child, like my parents, will lose control.

In the hands of an experienced estate planning/special needs attorney the process of creating an SNT can be a great opportunity to anticipate your child’s lifetime needs, review your current (and potential future) assets, and plan not only for your special child, but also for yourselves in the coming years. Every child and every family will have different needs, and no two trusts will be the same. Please contact Ilene L. McCauley at (480) 296.2036 or at or for more information about protecting your special child.