Transition Planning for Young Adults with Sturge-Weber Syndrome: How Parents Can Educate Themselves

OCTOBER 24, 2014

Question: What is transition planning? What can parents do to educate themselves about transition planning?

Transition planning is based on the Individuals with Disabilities Education Act, a federal law that requires services designed to be a results-oriented process, focused on improving the academic and functional achievement of the child with a disability in order to facilitate the child's movement from school to post-school activities. Parents of children with Sturge-Weber syndrome need to think ahead about the multi-faceted needs their child will face as an adult, from continuity of medical care, to facilitating achievement of appropriate work and living situations, to advancing personal and relational goals. Unique challenges can arise and there are a range of resources available to assist parents and young adults with this transition. It is important for parents and caregivers to begin asking about these issues, seeking information, and obtaining resources while the child is still in middle school. That way, there is plenty of time to try different approaches, seek advocates and resources, apply for eligibility programs, and build networks of support by the time the young person is aging out of the public school system.

Good sources of information can include patient advocacy groups, such as the Sturge-Weber Foundation and the Vascular Birthmark Foundation. It is also important to engage the child’s physicians and therapist’s on these issues. Many facilities, such as Kennedy Krieger Institute’s Adolescent Transition Lecture Series, host seminars on how to successfully navigate the transition years. In addition, I highly recommend this website for great information, resources, and links regarding transition planning:

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