Future Reflections Winter 2015 TRANSITIONS
by Diane Frazee
From the Editor: Discussions of transition for young people with disabilities generally focus on life skills, education, and job readiness. A topic that is seldom addressed is the move from the pediatrician to the adult health care system. In this article, Diane Frazee recounts how she and her daughter negotiated this challenging transition. Diane Frazee directed a parent-to-parent program in Ohio for twenty-five years, and she has presented workshops on a variety of disability-related topics statewide and nationally. Although officially retired, she works part-time for Family Voices of Ohio. She continues to find inspiration through her adult daughter, who has multiple disabilities.
Transition! The very word puts a fear of the unknown into all of us. We become so comfortable with what we already know that even moving on to something wonderful can create anxiety.
When children have special needs, early transitions for the parent and the child occur in quick succession. First you leave the early intervention system and start preschool. Before you know it, there's kindergarten, and right after that comes first grade. Then you move on to junior high and high school—and the next thing you know, your child is graduating, and a whole new world is on the horizon.
For those of us whose children have come this far, the school initiates a transition plan as part of the Individualized Education Program (IEP). Federal law requires this planning process to begin at least by age sixteen, and some states start as early as age fourteen. Most plans focus mainly on education, employment, and living arrangements. These are all important things to think about. However, one aspect of transition that is seldom addressed is the move away from pediatric care and into adult health care. For most of us, that's a scary thought!
As the parent of a young woman with multiple disabilities, I had developed a wonderful relationship with the pediatrician and the entire office staff. They had known and cared for my daughter since birth. Like most children with special health care needs, my daughter had many more visits to the doctor than the average child without disabilities. She was very familiar with the office surroundings and the procedures the staff put in place. I wanted to stay with the pediatrician forever! I was comfortable there, and so was my daughter. However, as my daughter grew and matured, I began to realize that it would be necessary for her to receive medical care from providers trained to treat adults.
Now the questions started popping into my head:
Whew! There was a lot to think about!
To get started, we had an honest conversation with our pediatrician about the need to begin searching for and using adult health care. We were quick to point out how satisfied we had been with the care he had provided, and we explained that we hoped to find someone that we liked just as well.
Our pediatrician was very helpful in assisting us with referrals, and he gave us some questions to ask during our search. He encouraged us to think of some of the more practical aspects that we hadn't considered:
The list of questions and things to consider was growing rapidly. I needed an organized approach for this effort. Fortunately, I came across an excellent website with exactly the resources I needed. Children with Special Health Care Needs (<http://www.cshcn.org>) has information for parents and for teens who are able to take an active role in managing their own health care needs.
Since my daughter is nonverbal and is limited in her ability to make certain decisions, I wanted to be sure I made good choices on her behalf. By law, when a child turns eighteen, parents no longer have automatic access to her personal health information. It may be necessary to consider options that range from signing release of information forms to establishing legal guardianship.
Having good information available at my fingertips changed the whole transition process from scary to exciting. My daughter was growing up. Although a part of me longed for the sweet innocence of her babyhood, I was now getting ready to prepare her (and myself) to launch into adulthood. I wanted to celebrate each new milestone with her, whether it was graduating from high school, getting a job, or finding adult health care that would meet her needs. Having good resources available made the whole process something to look forward to and not to fear.
My daughter is now a young adult, and the adult health care providers we have encountered along the way have been wonderful. I attribute part of this success to the preparation that we did, beginning in her teen years. We did our research, utilized an informal support network of other families, and made gradual changes along the way. I have enjoyed meeting new professionals who have been just as kind, caring, knowledgeable, and respectful as the pediatrician I was so fearful of leaving.
I am now employed as a health information specialist with Family Voices of Ohio. Family Voices is a national nonprofit, family-led organization that promotes quality health care for all children and youth, particularly those with special health care needs. The goal of Family Voices is to ensure that families receive high quality, comprehensive, affordable, community-based, culturally competent, family-centered care. As part of this organization, I have the opportunity to help other parents find resources and learn about services that can enhance their lives and the lives of their children.
For more information about transition, visit our website at <www.familyvoicesohio.org> and click on the Youth and Young Adults tab. There you will find several publications that may help you in the process of moving from pediatric to adult health care. These resources can go a long way toward preparing you for this transition. Instead of being frightening, it will be an exciting part of your young one growing into adulthood. Enjoy the ride!