GENETIC ALLIANCE – The world’s leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities.
It is important to think ahead and consider the needs your child will have so that you can make sure those needs are covered without unnecessary interruption.
BECOMING AN ADULT
NAVIGATING THE HEALTHCARE TRANSITION PROCESS
Becoming an adult comes with lots of changes: new responsibilities, worries about the future and life after school, new relationships and emotions, and more. Beyond that, there are the physical changes and changes in healthcare needs that come with getting older. This can be a difficult period for all children to enter and navigate, and can be especially challenging for teens who have special healthcare needs. Oftentimes the teen’s pediatrician has played an active role with their needs from birth or childhood and therefore knows their medical history well. The teens may also be used to their parents playing a large role in health conversations and helping make decisions regarding their care.
The term “healthcare transition” is used to refer to that process of transitioning from pediatric care to transferring to see an adult healthcare provider. While each pediatrician’s office is different, most tend to provide care to patients between 0 and 21 years of age. Young adults who are approaching that ‘cut-off’ age will need to find a primary care provider that works with adults in order to continue to receive the care they need. Another part of transition is helping the young adults take on more responsibilities regarding their healthcare needs. This may look different for each person but can include things such as making ones’ own doctor’s appointments. It is important for parents and healthcare providers to discuss the transition process with teens so that they can begin feeling comfortable with the changes that the healthcare transition will involve. While there is no concrete definition of a “smooth” or “successful” transition, there are some steps that can help families prepare for changes during the transition process. It is important to think ahead and consider the needs your child will have so that you can make sure those needs are covered without unnecessary interruption. Starting the conversation about healthcare transition planning early is important; some experts say as early as age 11. Not only do many pediatricians stop treating their patients between the ages of 18 and 21, but also eligibility for certain public healthcare programs may change as teens become adults.
WHO SHOULD BE INVOLVED IN THE TRANSITION?
Transition planning must be a team effort. Planning with the teen/young adult is crucial and will allow for the best outcomes. Also think about all of the individuals that play a role in your child’s health and whether they should be part of the conversations. Think about what information and support your teen/young adult will need to be able to adjust to a new system of care and any new responsibilities. Parents can help by explaining the entire process to their child, including how the healthcare system works, how to schedule appointments at their doctor’s office, how to sign in for an appointment, and how to present their insurance. Encourage your teen to ask about and know about their care such as what medications they currently take. By encouraging them to ask the right questions and perform certain tasks independently, they will be
more prepared to eventually lead the visits on their own. Your child’s pediatrician should also be very involved in the process. It is important for physicians and other healthcare professionals to engage parents and youth with information about their role in the transition process. Your physician may have information that can aid your family during this transition and provide special information regarding the transition for youth with special care needs. Lastly, don’t forget to involve the specialists that play a role in your child’s care. They may be especially helpful for identifying sources of care including adult sub-specialists.
RESOURCES FOR PARENTS AND TEENS
In December 2013, Nemours Alfred I. duPont Hospital for Children announced four educational videos they created to demonstrate the various aspects of transition for young adults with special health care needs, their families and caregivers. Nemours developed these first of their kind videos to show the continuum of services and programs available to young adults with special health care needs as they reach the age where a health care transition should begin. These videos cover four main areas:
The Becoming an Adult: Legal and Financial Planning video discusses issues around reaching the age of majority, supporting decision-making, legal guardianship, powers of attorney, special needs trusts, estate planning, and other needsbased financing options. The video Becoming an Adult: Deciding Where to Live discusses the different types of residential programming available to people with disabilities in the adult world. Viewers learn how to get connected with programs early on and how to be a proactive planner when searching for housing. Information about facility-based care, community group homes and independent living are all discussed, as well as, governmental assistance for financing these options.
The video Becoming an Adult: What Can I do After High School? helps young adults think about their options after high school, ranging from vocational rehab to competitive employment. This video discusses adult disability resources and how criteria for disability may change with age.
The Becoming an Adult: Taking Responsibility for Your Medical Care video describes tips for young adults to get acquainted with handling their own healthcare and being the primary contact with their physician.
These videos were created with support from NYMAC (the New York Mid-Atlantic Consortium for Genetics and Newborn Screening Services) (www.wadsworth.org/newborn/nymac), one of seven regional genetics programs funded by the Genetics Services Branch of the Maternal and Child Health Bureau of the Health Resources and Services Administration. Nemours will be expanding this video series to include two additional videos with information specifically for young adults with genetic conditions that will help them become better empowered, self-determined adults. The new videos (expected Spring 2015) are supported by an Impact Award
from Genetic Alliance through the National Genetics Education and Consumer Network
(NGECN) (Cooperative Agreement #U22MC04100), funded by the Genetics Services Branch of the Maternal and Child Health Bureau, Health Resources and Services Administration.•
ABOUT THE AUTHORS:
Sharon Romelczyk serves as Program Manager for the National Genetics Education and Consumer Network at Genetic Alliance. Her work focuses on improving access to genetic services through public education and by engaging individuals with genetic conditions and their families in program design, implementation, and evaluation.
Danielle Stratton is an intern at Genetic Alliance and a current senior at The Milken Institute of Public Health at the George Washington University. She strives to educate communities concerning health delivery, promotion, and prevention of disease.