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Providing future security for your child with a disability and your family is like assembling a jigsaw puzzle: All the legal pieces (will, trusts, guardianship issues, powers of attorney, and so forth) have to fit together.
Parents often contact me because they want me to draft a special needs trust for their child with a disability so
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My brother Jon didn’t get enough oxygen at birth causing various neurological issues.
In 1963, Jon got into trouble in our neighborhood. I won’t go into the details. Let’s just say one neighbor didn’t understand Jon. The neighbor filed a legal complaint. Jon was dragged through the “juvenile justice system” and the judge committed Jon to be placed in Elgin State Hospital. Jon was 15 years old. My other brother, Dave, was 12. I was 9. Sundays after church we (my parents, Dave, and I) would pile into our green Buick Skylark, drive a couple hours, and visit Jon. I’ll never forget one Sunday afternoon. We drove up to the hospital's big imposing gates. It all seemed dark, foreboding, and mysterious to my 9-year-old eyes. As we entered, I peered out at the bars on the windows. There were also a few people just lying beside a tree. My parents got out of the car and went inside to check Jon out for the afternoon. When they returned, Jon got into the back seat with Dave and me. Jon’s grey uniform was so filthy it had an acidic stench that literally making my eyes tear. (Years later I asked my brother Dave if he remembered that smell and to my surprise he said he sure did.) We drove to a nearby park. The park had grills and picnic tables set amongst big old trees. Dad grilled hotdogs for lunch. I don’t know why that Sunday stood apart from all the other Sundays. But, I remember standing by a tree about 30 or 40 feet from the grill -- just looking at my family, thinking to myself that it’s great that my parents are acting like everything is normal - but I know it’s not. |
I learned later in life that my parents were frantically searching for a residential program for Jon. Few existed at the time. I can't recall how long it took, but they found a private out-of-state program for Jon. And eventually, Jon moved back home.
Fast forward about 15 years when I was in law school. I was near the top of my class. I planned on joining some “big firm.” But, everything changed when my dad asked me to be a founding Board member of a nonprofit organization he co-founded. After dad retired, he wanted to give back to the community. He was worried about Jon’s future so he founded one of the first non-profit organizations in the country trying to help parents solve a vexing problem: “What will happen to my child with a disability after I die?” The nonprofit organization would act as an advocate, or a successor guardian, or a corporate trustee for people with disabilities after the parents died. My experience working beside my father on that Board of Directors changed my career path. When I graduated from law school, instead of joining some big firm I opened my own firm; I wanted to help parents give their child with a disability a safe future. Two years later, in 1983, I wrote the first book in the country about estate planning for parents who have a child with a disability. Thirty-five years later and hundreds of clients later — I’m still doing the same thing: Helping parents protect their child with a disability. Best wishes, Mark |
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Phone: (847) 262-3120 |
