A Comprehensive Cerebral Palsy Resource

Youth to Adult Transitional Care

Watching your child grow up and become an adult can be as scary as it is exhilarating. The difficulties that are natural during this time of life are often compounded by the extra challenges you both face when your child has cerebral palsy. The new world you’re stepping into may feel more overwhelming when your child has outgrown the many youth-centered programs for children with cerebral palsy and has begun to make his or her way as an adult. This is where youth to adult transitional care comes in.

When people refer to youth to adult transitional care, they are talking about moving a disabled child from dependency on a parent to as much self-reliance as is possible. This affects health care in the overall sense, meaning that the child’s well-being as a person is addressed, not just his or her move from a pediatrician to an adult doctor. The goal is to have as smooth a transition as possible sometime around college age, between 18 and 21. Your child’s medical team is an integral part of this change, of course, along with you, your child, and the goals and plans laid out in your child’s Individualized Education Program (IEP), which is a plan that outlines the best way to educate your child. Everything should be well coordinated so that your child’s first steps into adulthood don’t become an anxious time and can instead focus on his or her enjoyment of this new phase of life.

Although it can feel tricky, there are ways to navigate this time with less stress. Probably the most important thing you can do is to form an IEP for your child that clearly addresses his or her transitional care by the age of 16. Since having an IEP is mandated by the Individuals with Disabilities Education Act, your child should already have one that is regularly updated and tailored to him or her specifically. Every time an IEP is written or updated, it is done only after your child has been thoroughly evaluated and his or her needs reviewed by a team that includes you, teachers and special education teachers, and others from the school or school district, if necessary. Outside medical and psychological factors are considered, too, such as whether your child has trouble communicating or has a hearing impairment. Therefore, this is the best and most complete document in which to plan for your child’s future.

Because IEPs are designed with your child’s educational advancement in mind, by the middle of high school the IEP should contain information about how to help your child move into the adult world as easily as possible. As your child is old enough at this age, too, he or she should be consulted when writing the IEP and planning for the future, giving a sense of control and independence that will be vital as your child goes into adulthood.

There are many things to consider when creating this youth to adult transitional care program, such as your child’s interests and passions, continuing educational needs, where your child will live, how and when he or she will get a job, and so on. If you ever get discouraged, know that there are a lot of resources available, from lists of college scholarships specifically for disabled children to lists of post-secondary options for those who aren’t ready for or interested in college. A quick online search for “youth to adult transitional care” will yield plenty of information for you and your child to comb through together as you plan for this exciting next step in your lives. Together, you can decide what’s best and begin putting together everything you need to set up your child’s future success and happiness.