Successfully Transitioning Special Needs Kids

Successfully Transitioning Special Needs Kids

Successful Transitions: Moving from Childhood into Adulthood and from Pediatrics into Adult Care

Whether your child is a toddler or a teenager, transition is a word you need to know. As the parent of a teenager with asthma, allergies, cystic fibrosis, diabetes, epilepsy, hemophilia, or any other serious medical condition, your medical professionals have probably talked with you about “transition.” But don’t stop reading if you have a young child! This affects you, too, even if your doctors haven’t mentioned transition yet.

It can take years to properly prepare a child for medical independence. The more complicated the medical regimen, the longer it takes. When a child has a complex medical condition, the transition process should start in early childhood if possible.
The best time to start learning about transition is right now! So, what exactly is transition and why does it matter?

First, let’s define the lingo that is often used when discussing transition. The word “transition,” as used in the medical community, is defined by the American Academy of Pediatrics as “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care system.’” So, “transition” refers to the process of preparing a child (and parents) for independence and the eventual shift into adult medical care.
The word “transfer” refers to the specific point in time that a patient moves into the adult medical system. These two concepts are very different but you might hear them used interchangeably. Various hospitals and medical systems define the age of transfer differently; some are age 18, others age 21 or even longer.
There are many variables to be considered when deciding if a child is ready for transfer including health status and developmental ability. Check with your medical team about this important information when your child is young. Why? Because wise parents focus on transition (preparing their child for medical independence) well in advance of transfer (the actual shift into the adult medical system).
Parents are best advised to have their child ready for transfer at age 18 even if their medical center technically transfers at age 21. Why? It’s because a child may go off to college in a state where the medical system is different. Also, when kids turn 18, parents don’t have legal access to medical records without consent. And perhaps most importantly, when young adults are living on their own, whether it’s at college in another state or with roommates in their hometown, they need to know how to properly take care of themselves without parental involvement.

Following a transition plan will help ensure that this takes place. A “transition plan” is a written document that gives goals and guidelines for developmentally appropriate tasks to take place with the end result being a prepared, independent young adult. Some consist of simple checklists; others include questionnaires, knowledge tests and goal-setting helps. Disease-specific transition plans are sometimes provided by your medical professionals. If not, there are some very good ones available for chronic health conditions in general.
Here is an example of a simple transition plan for the metabolic disorder Phenylketonuria (PKU):

sample transition plan

Source: From Supporting Dev of Children with Chronic Conditions, Kieckhefer & Trahms, Pediatric Nursing, 2000.

So that explains “What Is Transition?” Stay tuned to find out “Why Does it Matter?”

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