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. Most of all, the sibling provides a loving and enduring family bond. Given the vital role of siblings, the challenge to service providers is to form a partnership with them to support their ongoing involvement with their brother or sister with retardation. Such an alliance is optimally formed early in the family life course so that the sibling is well informed about services and supports and so that service providers understand the preferences and capacities of siblings.