In 2011, an autistic ten-year-old was found wandering around a hospital alone. His mother decided that she couldn’t handle his medical and behavioral issues, so she dropped him off and left. This is not an isolated incident: parents with special needs children can grow desperate and snap. The children invariably find their way into child protective services or on the Social Security Disability system. The unlucky ones don’t fare as well.
The challenges are daunting. Autistic children may hurt themselves without constant intervention. Hemophilic children go to a hospital for simple cuts. Schizophrenic teenagers act on unreasonable beliefs and get arrested or go on spending sprees. Parents have limited employment choices, given the time and money required to help their children. Good and constant medical insurance is a must. Emergency medical visits or crisis situations call for frequent time away from any job. To add insult to injury, the social security system presents its own set of challenges.
What happens if these exhausted parents snap, become disabled, or pass away? With their proverbial rock gone, the children can “unravel,” and someone needs to step in to help. In my experience, the biggest challenge the parents face is finding someone willing to take over for them. Relatives are understandably wary of the tasks at hand – but there are ways to ease the transition.
First, one of the best ways to support your child is to act ahead of time. Identify who will assume control when you can no longer do so. Apply or have a plan for applying for social security or guardianship now or in the future. Educate and prepare your successor – they should know what is in place now, where it is located, and what to do if something happens to you.
Secondly, anticipate and plan for the future. Prepare for how to handle life’s curveballs in the event of unexpected future needs and challenges. If you pass away, will your child live at home, with others, or is a community a better fit? Will they work, and what happens if they can’t? Evaluate how you would handle each situation and write them down. Knowing your preferences relieves your successor of a huge burden.
Thirdly, have an estate plan completed and in place to support your decisions. Your child or your estate plan may need a supplemental or special needs trust (the terms are interchangeable.) This tool allows the child to receive government assistance while they have access to other assets, and is an indispensable tool depending on the situation. Your estate plan may decide to “pay” your child’s future guardian or trustee in some way. Make sure they know. One of their primary concerns may be what it will cost them, so this information may bring some peace of mind.
Lastly, if you aren’t already, get involved philanthropically or politically. Mental health is a huge issue today, and it affects us all. Those who desperately need help can easily fall through the system’s cracks. Organizations are increasingly short of volunteers and funds, so see how you can help today.
