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: http://www.wrightslaw.com/info/trans.index.htm.

Check back weekly for new posts and up-to-date information from Sturge-Weber syndrome expert Dr. Anne Comi.

Have a topic or question you would like to see addressed with a future Dr. Comi’s Weekly Update?

Enter your topic/question in the Contact Dr. Comi form.

Ask Dr. Comi

Note: These updates are not intended to address individual patient issues. If you have specific patient questions for Dr. Comi, please use the Contact Dr. Comi form and indicate that your question is private in nature.

Read our Archived Updates for more information on past questions and answers.

Want to know more about the exciting research going on at the Kennedy Krieger Institute to discover new therapies for Sturge-Weber syndrome?

Visit our Current Research section.

Help Children with Sturge-Weber Syndrome

Helpk Kids with Sturge-Weber Syndrome

Give to Sturge-Weber Syndrome research and help children enjoy fuller lives through improved diagnosis, care, and education.

Learn More Button

Sturge Weber Fundraising Thermometer

Hunter Nelson

Institute Discovers the Cause of Sturge-Weber

To learn more about our recent discovery View our press coverage

Dr. Comi's Updates

Dr. Comi announces research findings, posts important information, and answers questions of general interest to families living with Sturge-Weber syndrome. 

SUBMIT A QUESTION FOR DR. COMI

Sturge-Weber Center Events

Fall 2017:

Tropical Realty Charity Golf Tournament

More information to come!
 

 

Publications

Read inspiring stories, news and updates about the Institute's patient care, research, special education, professional training, and community programs.