“If you’ve met one person with autism, you’ve met one person with autism.”
-Stephen Shore
For adults on the spectrum, their ability to manage their daily lives greatly varies. Each has unique needs and abilities. Routines for many on the spectrum are extremely important and a disruption of that routine can cause major setbacks in their life. So what happens when a parent dies? Such an event can be devastating when the parent is the primary caregiver.
The number of children with autism shocks me. I had no idea that approximately 1 in 68 children have been identified with autism spectrum disorder (ASD) and that it is 4.5 times more common among boys than among girls. According to the Center for Disease Control’s Autism and Developmental Disabilities Monitoring (ADDM) Network, one in six children in the United States have a developmental disability of some kind that impact their daily lives or way the children learn.
I am blessed to be friends with a family that has an adult son with autism. “John” is on the spectrum, and he is 49 years old. He works 3 days a week at a small grocery store, pays his bills and brags about keeping better records than his parents. He is a little too quick to tell me my jokes are not very funny, which is probably true. Despite his many capabilities, John lives with the guidance, routine and stability of his parents. His parents’ biggest worry is how to be sure John is taken care of after they die. John’s family is just him and his parents. Other relatives are older than they are and many do not live in Tucson. They both know John is able to care for himself now, like when they go on trips and leave him at home, and they want to allow him his freedom as an individual as much as they can, but he needs oversight with his decision-making and they have a concern of people taking advantage of John.
So what did we do to help them? We established a trust for John’s parents by which John will inherit their assets in a trust set up for his benefit, a beneficiary trust. Also, John put a trust in place for himself, with protections built into both his trust and his parent’s trust for a co-trustee to assist John in managing his assets, when it is necessary. Plus, his parents still have the ability to assist John in managing his assets right now. John recognizes he needs assistance in discerning fact from fiction at times and knows his limitations. For example, if he receives a bill, he may just pay it without questioning whether he actually owes it. While it is not always the case that an adult child on the spectrum has the ability to manage his own assets, when it is, it is important to allow that independence to continue.
By putting a trust in place for John, he will not need a court conservatorship if his ability to manage his assets ever diminishes, because his co-trustee will simply step in for him. In addition to a trust that owns his assets, John signed health care documents to allow his parents access to vital information about his health and to allow them to make decisions on his behalf when he is unable to do so. Also, I encourage families with ASD to connect with local organizations to tap into all the possible resources available. There are amazing support groups for adults with ASD and for their family members. Socializing with others with ASD can help transition after the loss of a parent.
Allison Manning enjoys helping clients establish peace of mind in their estate plans and building relationships with her clients. If you would like to make an appointment to find out how we can help protect your legacy, call (520) 529-4000, or visit us online at www.KHarizona.com.
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