Virtually all parents in our study can articulate their preferences as to where their son or daughter would optimally live after they are no longer the primary caregivers. Parents devote countless hours to considering this riveting question and often involve other family members in this process. However, fewer than half of the families in our study have actually made a plan for the future. The most common step taken by families is putting the adult s name on a waiting list for residential services. One critical challenge is for service providers to respond to families who plan in advance as well as those needing a crisis placement.
Residential placement is the most likely outcome following the death of both parents.
After the death of either the mother or the father, most adults in our study remain at home with the surviving parent. The other quarter move in with a sibling. Siblings are the next generation of family caregivers. They inherit the mantle of responsibility for their brother or sister from their parents, even though most parents are ambivalent about giving them this obligation. These siblings may oversee the services that are provided by others, serve as guardian, or provide a new home to their brother or sister.