What will happen to my child when I’m gone?
by Beth
A story in the Pittsburgh Tribune-Review about the challenges inherent in the increasing numbers of young people living with autism features a picture of 20-year-old Tony Mambuca-Capanzzi and his mom, Marie Mambuca. Tony works at Easter Seals Western Pennsylvania. He lives at home and his mother worries a lot about what will happen to Tony when she’s gone. From the article:
Doctors diagnosed Tony Mambuca-Capanzzi, 20, with autism at age 3 and he still lives at home.
“He does not understand money. He would eat everything all at once. He’d walk into the street without looking. And who even knows what other people would do to him?” said Mambuca, 48, of West View.
She is hardly alone in her worry. By 2023, about 380,000 children with autism nationwide are expected to need extensive residential services as adults, according to the Department of Health and Human Services. The story discussed the dearth of future care options for children and adults with autism as their parents age and can no longer care for their child.
In my “Adults and autism: Our kids might outlive us” post, I told readers that Mass Mutual, one of Easter Seals’ national corporate partners, offers helpful resources for people with disabilities and their families when it comes to estate planning. Our son Gus was still a teenager when my husband and I set up a special trust for him to help make sure he’d be eligible for government programs like Supplemental Security Income and Medicaid after he turned 21, and then, too, after we die.
We at Easter Seals also recommend that in addition to setting up a special-needs trust, parents of children with autism or other disabilities draft a “letter of intent.” This letter, while not legally binding, provides a guide for your child’s caregivers or the courts on how you’d like your child to live after you’re gone. You can download With Open Arms (a guide that includes a worksheet to help you begin writing a letter like this) for free at our web site.