Parents always worry about the welfare of their children even, when their children begin to live their own independent lives. It is not difficult to imagine the fears and anxieties experienced by parents of adults with severe disabilities. Their biggest fear is that no one will take care of their "child" after they are gone.
Aliscia Banks, founding director of Families Helping Families and the parent of an adult son with multiple severe disabilities, discussed some of her worst fears about her son's future "after I am gone and his dad is gone."
As younger parents, Banks and her husband were more physically able to take care of their son's needs. "As we age and are less able to physically care for him, what are the solutions? How we are going to manage him and keep him at home?"
Some of the services that are available to help parents take care of their children with disabilitie are the waiver services, Special Needs Trust, and the ABLE Act which is a savings account. However, everyone does not have access to the waiver services. Then what do you do? "Other fanily members are about the only other option or paying for help which very few of us can afford to do," Banks pondered.
The biggest worry of the parents is that "no one will take care of him the way I do or my husband does. You worry that even the simplest things will not be provided for."
Banks gave some pragmatic advice to other parents in a similar situation. "Make the plans now while you are still able to make plans. Get a roadmap. Write it all down. Make certain you know who is responsible when you are gone. Now is the time."