When the caretakers are gone

6/12/2002

Lucas County is home to 355 mentally disabled adults whose caregivers are elderly. Nationally there are about half a million who are being cared for at home by a family member 60 years old or older, someone they are expected to outlive. Another 500,000 over 60 years old themselves are in the care of a family member.

These facts spell crisis for these mentally retarded men and women and for the rest of society.

The caretakers, usually parents, have devoted decades to assuring that the disabled person, usually their child, maximizes his or her potential in a warm home environment. They have done it at great sacrifice of their own time and their own ambitions. To some extent they have also sacrificed the disabled person's experience at independence, of the kind that involves the same distancing from parents that other children achieve. Late in life transitions are notoriously more difficult.

Now it is panic time as parents must figure out how their child, who will never be self-sustaining, will manage after they are gone. Plans need to be made before the caretakers pass on, despite the emotional difficulties that accompany separation proposals.

In Ohio through next year, mentally retarded people whose caretakers are 60 or older will enjoy priority status in accessing Medicaid funds for residential care that falls short of the institutional. The money would provide group or independent-living facilities for the retarded person, and with it an easier move to a different life while parents are still around to ease the transition.

Even early registration may not be enough. Counties must match federal funds for care to be provided. After 2003, mentally disabled persons will have to vie with others for Medicaid money. This population has, like the rest of us, gained the advantage of longer lives, and is expected to grow, so the post 2003 arrangement falls short of ideal.

Today's retarded adults who are 60 or older are the crest of the wave. Two or three times the current number are on the way.

It behooves aging parents and other family caretakers of mentally retarded adults to take advantage of the state program, and for the rest of us to talk to our legislators about a surer fix.