Oct 17, 2013 0 Share

Taking the Lead

The author as a child with her father and brother.
Photo by Donna Fischer

All right, fellow autism siblings, time to take a poll: How many of you know whether or not your parents have up-to-date wills, or whether or not your sibling has a special needs trust? If you have no idea, you're not alone; in fact, you're probably in the majority. According to a 2008 “Living with Autism” study conducted by Easter Seals, just 38 percent of parents who have children with an ASD have created a will, and just 17percent have created a special needs trust. In the past, I've written about the need for siblings to stand in these gaps; in fact, I created a month-to-month calendar for sibs outlining autism awareness tasks. Even so, I hesitated to talk with my own parents about estate planning. Though our parents have set up guardianship for my brother, I knew that there was more to be done. Certain important steps—such as updating wills and creating a special needs trust—had yet to be taken. I wanted to see a solid plan in place for the future, but I wasn't sure how to help our parents get moving.  

Siblings may be reluctant to take the lead for several reasons. First, they may feel uncomfortable bringing up frightening possibilities, such as the loss of their parents. Next, they may feel awkward being the one to raise the topic, thinking that their parents should be the ones to do so. Finally, they may feel unsure of what action steps to request, and how to effectively follow up with their parents. I'm certainly not immune to these feelings. Fortunately, though, I have life experience on my side. As a former program director for a special needs support organization, I've helped families through the estate planning and special needs trust processes in the past. I knew firsthand how liberating it could be, the peace of mind it could afford. 

Fortunately, when my family vacationed together last month, my mom brought up the subject. “Honey, we need help,” she sighed. “We have all that information you helped compile about the trust, but we still haven't set an appointment with the lawyer. We really need to do it, we just haven't followed through … we need help.” 

A small part of me was incredulous. My parents are organized, efficient people, so why hadn't they picked up the phone and set an appointment? Yet a wiser part understood perfectly. The special needs planning process is easy to put off; it's important, but it doesn't feel urgent. So special needs caregivers procrastinate. What with doctor's visits, medications, therapies, and daily work, there's so much to be done as it is; who wants to add another item to their to-do list? Plus, it's scary for parents and caregivers to walk into a lawyer's office and sign documents that spell out what happens in a worst-case scenario. 

“Okay,” I said to my mom. “I hear you. It is really important, but don't worry. We'll think of something.” 

Throughout the vacation, I wondered: Aside from actually making the call myself, how can I support our parents in getting this done? How can I hold them accountable to what they know needs to happen? On the last day of our trip, I figured it out. As we were leaving, I told my parents, “I heard you when you asked for help with setting up the appointment with the lawyer. And I've been trying to figure out a way to provide accountability, because it's really important for all of us to have these documents in place. So, how about this as a boundary: No phone calls between us until you set the meeting with the lawyer.” 

I employed this strategy because my parents had asked me to help, and because we have a good relationship. We keep in touch on a regular basis, and we enjoy talking on the phone. Temporarily pulling the plug on something we all valued would motivate them more than nagging. And sure enough, an appointment is now on their calendar. Now, we're all breathing easier.