Parents who have mentally disabled children, such as children with Down syndrome, cerebral palsy or other types of disabilities, can have anxiety and distress when they try to imagine what is going to happen to their child if something happens to them. Children with Down syndrome used to have a 25-year life expectancy. With today’s medical care, the life expectancy has increased to 60. By that time, the parents of a developmentally disabled child may barely be able to care for themselves, let alone be able to care for their grown, disabled adult child.
But a parent shouldn’t wait until they are no longer able to care for their adult child before making a decision about who will be their child’s guardian. Most parents of developmentally disabled children realize that their children may never be capable of completely living on their own or making their own decisions. Planning early for who will care for them and where they will live can give parents a peace of mind.
A couple in Melbourne are working as advocates for parents of developmentally disabled children. One of their goals is to help build and develop places where these children can live on their own as adults. Their Down syndrome son, who is now 47, is living on an 11-acre residence where he can have his own space, although shared with other residents. He has friends, can take bike rides and has a sense of being on his own.
While these children may transition into a home similar to this couple’s son, most of them are still not able to make serious decisions by themselves. Another Melbourne woman, who has a 22-year-old Down syndrome daughter, has limited guardianship of her. This allows her to make medical decisions for her daughter.
In Florida, a person can become a guardian advocacy for their developmentally disabled child. This guardianship is less restrictive in providing for a special needs child. Estate planning attorneys can help parents obtain guardian advocacy, as well as other types of guardianship.
Source: Florida Today, “Families address matters of life and peace” Britt Kennerly, Jan. 28, 2014