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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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At birth, my brother Jon did not get enough oxygen causing various neurological issues, including an intellectual disability and mental illness. Much later, in 1963, Jon got into trouble in our neighborhood when he was an adolescent. Although I won’t go into all the details, let’s just say Jon did something wrong, but he didn’t understand what he was doing, and the neighbor didn’t understand Jon’s illness. After all, in terms of understanding cognitive and mental health issues, 1963 was essentially the “dark ages.”
The upset neighbor filed a legal complaint forcing Jon into the ”juvenile justice system.” The final result was Jon was committed and placed in Elgin State Hospital. At the time, Jon was 15, my other brother, Dave, was 12, and I was 9. Every Sunday after church, my parents, Dave, and I piled into our green Buick Skylark, and Dad drove a couple of hours to the state hospital. I’ll never forget one Sunday. That early afternoon Dad drove up to the hospital’s big, imposing wrought iron black gates. To me, the place felt dark and foreboding. As we drove through the open gates, I peered out my window noticing the bars on all the hospital windows. My dad exited the car and went inside to check Jon out for the afternoon. Jon got into the back seat with Dave and me when they returned. Jon’s gray uniform was so filthy it had an acidic stench that made my eyes water. (Years later, I asked my brother Dave if he remembered that smell, and he said he sure did.) Dad drove to a nearby park. Set amongst massive old trees were picnic tables and barbecue grills. For lunch, Dad grilled hotdogs. I don’t know why that particular Sunday afternoon has lodged in my memory since we did the same thing the other Sunday afternoons. Anyway, I remember standing about 30 or 40 feet from the grill under a tall tree— just looking at my family, feeling grateful that my parents were acting like everything was “normal” – however, I knew it wasn’t. |
Much later in life, I learned that my parents were frantically searching for a residential program for Jon. In those days, few community settings existed in Illinois. I can’t recall how long it took, but eventually, my parents found a place and moved Jon to a private out-of-state program in Texas. And much later, Jon eventually moved back home.
Fast forward in time to when I was in law school. I was near the top of my class, and almost everyone’s goal was to join a prestigious law firm. However, my future trajectory changed during my second year in law school. My dad asked me to be a board member of a nonprofit organization he co-founded. After Dad retired, he wanted to “give back” to the community. Dad was worried about Jon’s future, so he co-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 acted as an advocate, corporate guardian, or trustee for people with disabilities after their parents died. My experience working beside my father on that board of directors changed my career path. After I graduated from law school, instead of joining some big firm, I opened my firm; I wanted to help parents give their children with a disability a safe future. Two years later, in 1983, I wrote the first book in the country about estate planning for parents with a child with a disability. Forty years 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 |
