What will happen to my disabled child when I die?

ONE major concern for parents of children with disabilities is the uncertainty of their child's future after their death, particularly for those with high support needs. In Malaysia, there is a growing awareness of this issue, but national support mechanisms are still lacking, placing much responsibility on parents, family support networks, and civil society organisations (CSOs).

Children with disabilities typically navigate five key stages in life, each presenting unique challenges. The first stage involves parents recognising developmental concerns and seeking diagnosis and therapeutic support. The second stage occurs during preschool, for development of school readiness and communication skills. The third stage involves formal schooling, ideally in an inclusive environment where the child learns together with peers. The fourth stage presents the challenging transition to university, vocational training, or employment training.