I am a parent of a mental health consumer. He's 45; I'm 75. I have looked after him since he became ill at age 19. I am beginning to worry about what to do if I should die and he continues to need "protection."
(Column: Ask the Therapist)
Rita Seiden, C.S.W., Ph.D., Executive Director, Park Slope Center for Mental Health
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Good question! And not asked often enough. Aging parents of disabled adult children are often in a quandary. They want the child to be independent but the history of illness and acute episodes gives the parents' anxiety a basis in reality. Talking with your son's therapist is probably not going to be all that helpful. S/he will be limited by her/his obligation to limit the information that is shared with you. S/he will need to respect whatever limitations your son wants to put on the assistance that s/he can provide.

You may want to turn to another category of helping person: the private care manager. When you are the client for the care manager (usually a social worker) then s/he helps you to assess what are the strengths and weaknesses in your son's ability to function. S/he will help you to create a plan for you and your son that may involve a guardianship proceeding if you will have money to leave your son; or a public guardianship if he will not be able to manage his public benefits. S/he should be able to help you find an attorney that specializes in this area of the law; and, she should be able to lay out a plan for you and your son and other family members.

You can go directly to an attorney for estate planning (trusts, wills, etc.) but it is the social worker that will help you figure out what works for you. For example, each of us has different kinds of reactions to planning for our own deaths or frailty. After all, some people never make wills because they imagine even thinking about death is something to be avoided. Other people can make wills for after their own deaths, but find it hard to talk about establishing trusts for disabled offspring because they can't bear the idea of losing control over their own money. Still others feel so overwhelmed or unsophisticated that they really don't know that there is help to be had.

But it is much better for you and your disabled son to plan for your possible frailty and the likelihood that he will survive you. You don't want to leave him unprotected if he needs that protection. You don't want to threaten his benefits by leaving him your estate directly. You want to feel comfortable that someone has more than a family obligation to look after him. And, if you have underestimated your son's ability to cope, then a care manager can help you with that also.
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