Fear for the Future of a Disabled Child

Fear for the future of a disabled child becomes especially poignant as parents near the end of their lives. A concerned mother reaches out to advice columnist Eric Thomas about her disabled adult son’s care.

Dear Eric:

My psychologically disabled adult son who also suffers from chronic physical illnesses will live with me for the remainder of my life as I care for him.

His medications, doctor visits and hospitalizations with multiple surgeries take up most of his monthly disability income. I was informed by my attorney to have an executor of my will selected in order to allow him to continue to get his disability pay so that his assets would not show over the required amount.

Most of the people I know that could do this are my age (70) and all of us could die leaving him in a predicament. My younger friend in her 40s is an ideal person for this but she is hesitant to take on such a role.

My understanding is that when he needs money, he would call her, and she would simply deposit that money from my account to his. The bills would be auto-paid. Everything else is in trust. I was also told a bank or financial planner could take this role but would charge high fees and my son’s severe social anxiety would not allow him to communicate with someone not known to him. Do you or your knowledgeable readers have any suggestions for me?

– Concerned for the Future of a Disabled Child

Dear Concerned:

I talked to attorney Lindsey Weidenbach, who has expertise in a number of fields, including estate planning, to get some best practices for people in your situation. While, of course, she couldn’t provide legal advice, she helped me to get a better understanding of the factors at play. She pointed out that estate programs can last for years, requiring significant mental capacity and time to manage, including making an inventory of assets. So, part of your friend’s hesitation may be related to the scope of the duties required of a will’s executor.

I’m curious if you’ve discussed the option of making someone a trustee of the trust, which may have a much more limited set of duties – i.e., the phone calls from your son that you outlined. This also would provide a check and balance system that doesn’t involve your friend accessing your account.

It’s also possible that your friend sees the amount of care that you provide and is unsure of her ability to take on that role. Presuming you’ve thought through what services or professionals can help your son in the way that you do, you should talk it through with your friend. Does your son need transportation help? Will he need a medical advocate? Giving your friend a clear, honest understanding of what’s being asked will help her.

The work you’re doing to plan is important and loving. I also know that it’s stressful, with many unknowns. If you haven’t already, you may also want to reach out to an organization like the Academy of Special Needs Planners (specialneedsanswers.com) for additional guidance.

More for Aging Parents of Adults with Disabilities

R. Eric Thomas (he/him) is a national bestselling author, playwright, and screenwriter. His accomplishments include “Eric Reads the News,” a daily humor column covering pop culture and politics, serving as the interim Prudie for the advice column “Dear Prudence,” and “Congratulations, The Best Is Over.” Send questions to R. Eric Thomas at eric@askingeric.com or P.O. Box 22474, Philadelphia, PA 19110. Follow him on Instagram and sign up for his weekly newsletter at rericthomas.com.

©2024 Tribune Content Agency, LLC.

Find more words of wisdom like fears for the future of a disabled child – from insensitive parents to a husband’s mid-life crisis, DNA surprises, and more – in the Boomer Advice for Life department.