By Joel Krooks, Esq.

By now, we are hoping that you have read all of the blogs in the guide to being a parent of a special needs child blog series. The last blog in the series may be the most important and discusses most parents’ biggest fear.

The reality is, in all likelihood, a child with special needs will outlive their parents. Many families are fortunate enough to have siblings step in and act as pseudo-parents when the parents are deceased. However, some families are not as fortunate and really need to plan for the possibility of their child with special needs outliving them. Also, some families do not want to put this “burden” on their other children.

This blog by Sandi Rosenbaum describing the housing options available to individuals with special needs does an outstanding job of outlining the various housing options. Where a child with special needs is going to live is always a major concern for a parent. If a child is in a group home or another type of living facility, typically this takes some of the stress off a parent because the goal will be for the child to be able to live at the group home or facility for the remainder of that child’s life. If housing is not secured, then a parent is relying on a family member, friend, or a corporate trustee to find residential placement for their child when they pass away.

It is vital for you to have a supplemental needs trust in place and appoint a trustee to manage the trust assets when you are no longer able to do so. This individual or corporate trustee will be in charge of paying for bills, rent, or any other expenses that your child may have. If a family does not have a family member to appoint as trustee, many families use corporate trustees or non-profit organizations as trustee.

If a guardianship is in place, then it is important you have a standby guardian in place to take over the guardianship responsibilities. This person will oversee health care decisions for your child if you are no longer able to do so. Similarly, if an individual has advance directives in place, then it is important that the advance directives have someone appointed as fiduciary after the child’s parents.

Thinking about all of these issues can be very difficult and troubling for parents of a special needs child. We are Littman Krooks LLP are here to work you through these issues and discuss all of your options with you.