The Road to Adulthood: More Information for the Journey

Horizons in Hemophilia, May 2012

By Cathy Hulbert, LCSW, HoG Social Worker; Betsy Koval, RN, BSN, Emory/Children’s Healthcare of Atlanta, Hemophilia and Bleeding Disorders Clinical Coordinator; and Chartara Gilchrist, BA, Adult Hemophilia Social Worker/Research Coordinator at Georgia Health Sciences University

This is part three of a series on helping kids and teens take a bigger role in their own bleeding disorder care.

When a child is young and feels vulnerable, it is normal to become attached to your pediatric hematologists, nurses and social workers. Very often, these are the people who helped your family adjust to living with a bleeding disorder. The thought of changing to a new set of faces often makes families nervous! Your medical providers can feel the same way. Saying good-bye is hard for everyone. While this is normal, your medical teams want to make the transition as smooth as possible.   

In two previous articles, Teens Transitioning to Adulthood: How Grown Are You? and Is Your Child On the Road to Independence? We Can Help! we looked at the challenges for kids, teens and parents when the time comes for young people to take a bigger role in their medical care. Hemophilia of Georgia nurses and social workers work with clients throughout their lives. At your Hemophilia Treatment Center (HTC), the medical team changes when a person becomes an adult.

When you are in the pediatric part of the program, parents play a huge role in your care, seeing to it that your bleeding disorder is being properly addressed and treated and that joint mobility is maintained. The HTC team also takes a lead role in coordinating care with other doctors, including your dentist.

But what happens when you become an adult in the HTC program? At age 18 the team wants the young adult to take on the primary responsibility for bleeding disorder care. 

 “Unless there is a compelling reason, ONLY YOU, the patient, should be calling the treatment center about bleeding, appointments and procedures,” according to Betsy Koval, RN, BSN, who is the Hemophilia and Bleeding Disorders Clinical Coordinator at Children’s Healthcare of Atlanta.  “The age at which you should transfer to the adult team is age 20, as you cannot be admitted to a pediatric facility once you have reached age 21.  By this age you should have met and established a relationship with the adult providers.”

After turning 18, many patients decide to drive themselves to clinic. If it’s your first time doing this, make sure you know in advance where to park and how much money to bring for parking. At the Egleston/Emory campus you can choose between valet parking and parking in the decks. Contrary to what you might think, valet parking is not more expensive in this setting. It’s good to ask these questions when you make or confirm your appointment. Of course, the option remains to bring a parent, but doctors and nurses will address most questions to you.  

Strict privacy laws known as “HIPAA rules” prevent doctors, nurses, social workers, physical therapists and other team members from talking with other people about you without your written permission.

“We as a treatment center must stand by this law,” says Ms. Koval. “Adults should be seen once a year or more often based on their bleeding or need. We all work together as a team but you must contact the adult nurse coordinator prior to any procedure so that your safety can be ensured through a well thought-out treatment plan.”

This link https://www.hog.org/bleeding/page/hemophilia-treatment-centers provides important phone numbers for all of Georgia’s HTCs, as well as the names of providers.  If possible, please put these numbers in your phone so that you can reach your clinic when you are away from home.

At Emory, the adult team has its own social worker, Hilary Cohen, LCSW, who is available at 404-778-5535. She is available during your clinic visit. Your HTC social worker can help you with support and resources and coordinate with Hemophilia of Georgia social workers if you utilize their services. If you know up front that you need to speak with a social worker about insurance or resources or other important issues, please let the nurse know as soon as you get to clinic.

At the HTC located at Georgia Health Services University (GHSU) in Augusta, you will also meet the adult social worker, Chartara Gilchrist, BA, who can help smooth the way for adult care. You can call her directly at 706-721-0871. She will guide you in learning more about what to expect and where you will be seen as an adult. The goal is to have no big surprises when a person with a bleeding disorder turns 18. 

And in Savannah at The Children’s Hospital at Memorial University Medical Center there is an individualized approach. Some patients will transition to an adult hematologist at GHSU and some will stay in Savannah. The HTC there has a part-time social worker, Donna Hammontree, LCSW, who can be reached at 912-350-5616.

“In addition to helping understand insurance issues, I also support young adults in managing the bleeding disorder in the college or university setting or in the work force,” Ms. Hammontree said. The other HTC and HoG social workers are available to do the same. To reach an HoG social worker call the office at 770-518-8272.