Who Will Take Care of My Special Needs Child When I’m Gone?

One of the major concerns that parents and families of children with special needs have is the question, "what will happen to my child when I am no longer here to look after them?" I include myself in this category.

Regardless of finances, there is always that concern about who will really have their best interests at heart. And there are other questions, such as, how can we avoid placing this burden on siblings? Will their needs change over time as they get older?

Personally, I wonder about providing for my child while not overwhelming his sibling. Even if I set up a trust, who will be around to oversee it or be able to say "no" when a request is unrealistic or if services are needed? This week I met with a gentleman who has a son in exactly this position. Professionally he is a trusts/ estate lawyer, but deals with so many families in this situation that he decided to create Hope Trust, which is a website designed to provide services as needed for such individuals. This trust is in its early stages, but is forwarding-looking and offers so many resources based on a deep understanding and knowledge of the individual in need and provides an exciting solution to an issue we all worry about. 

Some families have children who will have to be in life-long supported-housing/care. Some are on Medicaid. Other parents have highly-functioning children, yet still need some oversight and help, especially when things unexpectedly go wrong. Their child may experience needs that are emotional and financial or in the area of housing, legal, psychological, overall health or other unanticipated crisis’.

We all know that things can be going smoothly until suddenly they aren't. These are the types of issues that keep us all up at night, even in the best of situations. So let's think outside of the box and consider these kinds of trusts to give us and our families some peace of mind.

—Dr. Carol K. Kennedy, Ph.D.