1.0 TRANSITIONS: PLANNED AND UNPLANNED

“Transition” is the word we will use for the changes,

planned and unplanned, that the person with CdLS and their family will go through in a lifetime. Sometimes they are true transitions – a process or a period of change – and sometimes (even despite our best efforts) they are abrupt dislocations. While we can never control the future or plan for every possibility, the better informed we are as to what to expect, the better equipped we are to take appropriate and timely action to make these transitions as smooth as possible.

Some of the most import- ant changes are based on current laws, like the federal and state education laws, that cover the right to educational services from birth through the time the individual “ages out.” Transitions occur with the move from early intervention, to pre-school, to school, and then to adult life.

Other important law-based changes occur when the individual “comes of age” – reaches the age of majority. At this time, a guardianship may be necessary for family members to have a voice in decisions involving such basic matters as medical care or where the individual is to reside. There may be issues of continuing coverage under parents’ med- ical plans. Various government benefits, like Medicaid or Social Security Insurance (SSI), may become available at this time (or earlier or later, depending on individual circumstances), and adult services (including residential and day programs) may be available.

Other changes are based on circumstances that are hard to anticipate. The needs of the individual may change, and a program that seemed ideal may no longer be appropriate. A family may move from one town, city or state to another. Government funding for a ser- vice or program may disappear, or new services or programs become available. And, what may be most difficult, the pri- mary caregiver(s) or guardian(s) may no longer be available or able to fulfill that role.