Families may feel a range of emotions after the diagnosis of a genetic condition. You may feel afraid of what is going to happen next. Or, you may have a sense of relief from learning what the cause of a medical problem is.
Transition for children
One of the major milestones for all families is when a child begins to transition into adulthood. All families need to plan for this time, but it is especially important for families of children with health conditions. There are many resources available to help assist in this transition process. It may also be helpful to reach out to an advocacy or support group. Families who have already experienced these transitions are often good sources of information.
Transitioning Your Medical Home
Transferring care from a pediatric specialist to an adult provider is a big step in the transition process. Often young adults have been with their pediatrician for many years, and changing providers can feel like the loss of an important support system. The National Center for Medical Home Implementation offers resources for young adults and families to help ease this transition.
“A well-timed transition from child- to adult-oriented health care is specific to each person and ideally occurs between the ages of 18 and 21 years. Coordination of patient, family, and provider responsibilities enables youth to optimize their ability to assume adult roles and activities.”
---A Clinical report- Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home
One challenge some families experience is services that were accessible in a pediatric setting (for example, a metabolic clinic) may become harder to access in an adult care setting. Speak with a condition-specific advocacy organization if you face these challenges. Many organizations may be able to help you find a solution. Search Disease InfoSearch to look for the organization that focuses on the condition you are interested in.
Students with an Individual Education Plan (IEP) will start to think about an educational transition plan as early as 14 years old. The student, parents, teachers and resource specialists act as a team to create the transition plan and make sure that it is followed and changed as necessary. A transition plan is incorporated into every IEP. The plan has information on the student's current level, what goals the team has for the student as the transition into adulthood takes place, and some milestones that the student should strive to achieve as he or she gets closer to the end of the transition process. The National Center on Secondary Education and Transition has more helpful information of education transition.