The health care system isn’t ready to replace aging caregivers

The first generation of developmentally disabled adults who grew up at home, not in an institution, are now middle-aged and facing a health care system that’s largely unprepared to take care of them as their baby boomer parents age out of that role.

Numbering in the tens of thousands, they were the test case for deinstitutionalization. Now they are test cases for an ill-defined, underfinanced future. Most have never spent much time away from their parents and are on long waitlists for state services, which may be out of reach until an emergency strikes.