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Transition to Adulthood

Question: 

My 16 year-old daughter is very bright and dreams of going to college.  She has an IEP that includes shortened days and a home tutor, she uses a power wheelchair for distances and has a G tube for hydration and occasional extra nutrition.  Is this possible?  Where do we start?

Answer: 

Congratulations to your daughter for following her dreams despite her challenges, and to you for seeking out ways to support her ambitions!  Yes, college is very possible for a young adult with Mito, and there are support systems available to help you both with the educational, medical, social, emotional, vocational, and physical transitions that await you.

Where to start?  The MDA has put together a workbook called the Roadmap to Independence that offers excellent "conversation starters for teens, their parents or guardians, and the people who support them.  http://mda.org/publications/PDFs/RoadMaptoIndependenceYouth.pdf

Are there Education accommodations and supports available for college students with disabilities?  Yes, but it's the student's responsibility to seek out the accommodations and decide which offered supports are the most effective for his/her education.  These federal resources+ help students with disabilities and their parents plan for a smooth, safe, and successful tradition from an IEP to adult ADA laws.  http://www.disability.gov/education/parent_resources/transition_planning/preparing_for_post-secondary_education

How do parents start transitioning their child's medical care from pediatric to adult health care?  This is a tricky subject and every person with Mito will have a very unique health care transition.  Here are a few resources that may provide support:

·         The Health Care Transition Initiative has created a series of videos that give suggestions for making the pedi-adult care transition as smooth as possible.  http://hctransitions.ichp.ufl.edu/gladd/

·         Are you looking for an outline for a care notebook?  Here are pages for you to choose from.  http://www.medicalhomeinfo.org/for_families/care_notebook/

·         Are you looking for a framework to create social stories to give your young adult an idea about the different experiences and expectations that go along with an adult medical practice?  These model transition letters may give you some ideas.  http://depts.washington.edu/healthtr/index.html

·         Are you looking for tips on choosing an adult health care provider?  These articles discuss important differences between pediatric and adult care for young men and women as well as some ideas about creating effective doctor-patient communication skills. http://depts.washington.edu/healthtr/tips/index.html

·         "Be In Charge of YOUR Health Care!" a power point slide show for adolescents and parents/guardians:  (Created for WA state but information applies for adolescents living anywhere within the US) http://depts.washington.edu/healthtr/powerpoint/empower_files/frame.htm

 

SEE ALSO -  GOING BACK TO SCHOOL

  NEUROPSYCHOLOGICAL PROBLEMS AND MITOCHONDRIAL DISEASE