What happens when I’m gone? Planning for Adult Children with Special Needs

Your calendar is coordinated to keep track of appointments for your adult child with special needs.  Your to-do list includes researching programs that you’ve heard of or meeting with an advisor to plan financial details.  You know that no matter how invested in work, friends, or anything else, you are available if your adult child needs you. You answer the call; that’s just how it’s always been.  You have always been the person: at diagnosis, in the middle of the night, when the school calls in crisis, when housing is a question, when therapies aren’t working, when therapies ARE working, when there’s something new to try, or when he just needs to hear your voice. It’s you. 

As parents, we’ve all heard the phrase, “The days are long, the years are short.”

Those words speak to us in different ways. They may spark memories of long nights or tantrums that felt like they’d never end. For most of us, they remind us that time continues to move on and we do, too. One decision leads into the next and one life stage steps right up to another.  We do our best to remain in the moment while planning for the future.

We don't expect anybody else to do what we do for our child, so while we're still here, we want to try and have some peace of mind that everything will be OK.”

- Brian N. Rubin, President of the Special Needs Alliance

In a recent publication from USA Today, Preparing for a life after death, the author outlines 3 ways to support families in finding that peace of mind: (1) financial planning, (2) legal protections, and (3) support team. The article goes on to say, “With the right financial resources and legal protections in place, an adult with special needs can thrive.” 

How can Exceptional Lives (ELI) help?

ELI provides resources and supports to help with financial planning and understanding legal protections.  We have created a How-To Guide to walk you through the Supplemental Security Income (SSI) process. You’ll start by answering a few questions, which will generate a personalized resource for you. When you’re finished with the Guide, you should have a sense of whether you might be eligible and how to start the process. Access the Guide here and reach out to our expert support team for any questions that come up along the way. We love feedback from our users so send us a note—did the SSI Guide help you? "The goal in the advocacy community is for every individual with disabilities to live a full life in a community,” Benjamin Rubin says.You have made decisions with this goal in mind for years, and you’ve probably had support along the way. Maybe that support has been in the form of direct care, respite or a trusted friend.What does it mean to you and to your child to “live a full life”?  Think about community, interests, self care, social and educational opportunities and experiences. Who can help create the space for your child to realize his dreams or goals? If your child can be involved in some capacity, ask!  Identify and gather your support team and start the conversation! As always, time marches on, but with the right tools and support, you can plan for the future while having more time to enjoy the moment. Good luck! Visit the Supplemental Security Income (SSI) Guide