What is a special needs trust?Read more
Where is your son going to live when he can no longer live with you? Will he move in with a sibling? Or into a group home? Who will make the decision? Who will monitor the care he receives? It's never too soon to begin answering these questions and making sure that the living and support arrangements are in place.
In some cases, it can ease the transition for all concerned if the child moves to the new living arrangement while his parents can still help with the process. In many parts of the country, non-profit organizations and private consultants can help set up the plan, research available options, and assist in the move.
It will help everyone involved if the parents create a written statement of their wishes for their child's care. They know him or her better than anyone else. They can explain what helps, what hurts, what scares their child (who, of course, is an adult), and what reassures him or her. When the parents are gone, their knowledge will go with them unless they pass it on.
This plan of care, often called a "Memorandum of Intent," should also include all the basic information anyone taking over from the parents should have, such as the name and contact information for the child's doctor and information on any medications he or she takes. This document should be updated on at least an annual basis.