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Transition

 
For parents, caregivers, health care providers, and teachers, concerns and questions often arise regarding the care and well-being of individuals with Cornelia de Lange syndrome. 

“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 can be abrupt. 

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 important changes are based on current 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, pre-school, school and then to adult life.

Other important law-based changes occur when the individual reaches the age of majority. At this time, a guardianship may be necessary for family members to have a voice in decisions involving basic matters, medical care or where the individual will reside. 

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Recommendation(s)

Transition

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Transition of care should be initiated at an early phase, with proper transfer of medical history and knowledge about the personal characteristics of the individual with CdLS. It is recommended that current and future health care providers jointly evaluate individuals with CdLS in order to smooth the transition.

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