Next we are concerned about the options the families can pursue in establishing future plans for their son or daughter with mentally challenged. It is clear to us that the most riveting question that these parents think about day in and day out is, what will happen to my child when I die? The need for planning for future is a unique path faced by these families. Most parents don't have to worry about what will happen to their child after they die because their child has gone on to live a more or less independent life. However, when the child has mentally challenged, the parent cannot assume that without some kind of forward thinking and support, that the child's life will maintain the high quality that the parent's would like to hold them to. Basically, parents have two options that they can pursue in establishing a plan for their son or daughter's future. First, parents may expect another family member to take on responsibility of providing direct family care to the son or daughter with mentally challenged. Second, parents may seek a placement in an out-of-home residential setting, such as a rehab center or a group home, which would then transfer the direct care giving responsibility from the family to the formal service system.
Also some parents would like their child to have the option of living in a more independent setting, but they want to make sure that there is a family member, usually a brother or sister, who will provide some continued involvement, to maintain a close relationship with the son or daughter with mentally challenged and who can make sure that the quality of life is maintained at a high standard.
There are some families who neither have identified another family member who will take over the responsibility, nor who have placed their son or daughter's name on a waiting list for living away from home. So nobody knows what is going to happen to these adults after their parents are gone.
In some cases, the siblings take over the responsibility of the challenged brother/ sister. Mostly it is the older sibling concerned. Usually an elder sister is involved in taking care of the younger brother/ sister with mentally challenged. There are families where there are siblings, but there is no involvement, either affective or in direct care giving from a sibling to a brother or sister with mentally challenged. In these families, the mother feels a greater degree of burden and stress than when at least one sibling is involved with the family member with mentally challenged. There are a few families, in which the son or daughter with mentally challenged is the only child in the family. The mothers of these children seem to be at risk for poorer health and less overall satisfaction with their lives than mothers who have children other than the son or daughter with mentally challenged. In certain cases, mothers were very sensitive to the relationship between their other children and their son or daughter with mental challenge. They were particularly sensitive to that relationship and it reflected on the mother's well-being so much more than her direct relationship with any of her children. It mattered to her that the next generation had a close relationship. Siblings figure prominently in the well-being of mothers. Usually it is seen, the larger the family, the more likely it is for siblings to be involved, for at least one sibling to be involved with the son or daughter with mentally challenged. The siblings of a next generation of family care givers and many of the mothers feel that their son or daughter's future is in the hands of their sibling.
