Pergunte ao perito

Transition


        Para pais, prestadores de cuidados, prestadores de cuidados de saúde e professores, surgem frequentemente preocupações e questões relativas aos cuidados e bem-estar dos indivíduos com síndrome de Cornelia de Lange (CdLS). 

“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. 

See below the topics that zoom in on different aspects of Transition...


Recomendação(ões)

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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Por favor note que o Pergunte ao perito service/ é composto por profissionais voluntários em várias áreas de foco. As respostas não são consideradas uma consulta médica, comportamental, ou educacional. Perguntar ao Perito não substitui os cuidados e atenção que o médico pessoal, psicólogo, consultor educacional, ou assistente social do seu filho pode prestar.

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