Transition is often thought of as moving on,
or change. The transition from grade school, to high school,
onto independence and (before you know it) young adulthood,
presents times for learning new behavior and adjusting to new
situations. For families with a child who has a bleeding disorder,
these times of change and adjustment are compounded by the medical
transition. The issues for the family, schools, and the child
with a bleeding disorder, will be a bit different because we
all transition or adjust differently depending on our environment,
culture and other influences. When to address these issues will
occur at different times for each family.
Transition involves a series of questions that
may result in different answers for each family. For example,
for the family that has a daughter with vWD, there is a need
for a gynecologist as well as a hematologist to manage day-to-day
living, along with a home care company and a hospital emergency
room.
Insurance
Insurance issues for the young adult leaving for college or
for post secondary school will vary. Most institutions require
proof of health insurance coverage. The on-site clinic should
be visited to assess the level of service offered and to discuss
how they may better serve you if the need arises. A map including
driving directions and telephone numbers to the emergency rooms
in the area is necessary just in case there is a situation that
requires another person’s assistance in getting help during
a crisis. Some issues to consider about insurance: Can my child
still be covered under my policy when they leave home? If so,
for how long? What if my child cannot find a job with insurance
that will cover their bleeding disorder? What state programs
are available for assistance?
Privacy
Privacy of the person with the bleeding disorder is an issue
that must be addressed. It is important to inform those who
need to know. For example, for the college student, the Resident
Assistant or Dorm Employee should be aware of the student’s
health condition in case of an emergency. The faculty members
need to know your situation in case there are otherwise unexplained
absences or tardiness. If this information is provided and discussed
ahead of time, arrangements can be made so that grades are not
negatively affected. You may be able to register with disability
services on your campus. This will further protect your grades
from unexpected absences. For the young adult in the work place,
the supervisor or manager should be made aware of the circumstances.
The individuals you confide in need to be attentive to your
need for privacy and understand the importance of not sharing
your personal medical information with others.
Independence
Young adults with a bleeding disorder progressively take on
the responsibilities of independence and adulthood. From summer
camp, to self-infusion, to driving and voting - all of these
activities are part of maturing into an adult. However, one
must also learn to pay attention to their health. Self-care
and self-management is a necessity for a person with a bleeding
disorder. Learning the skills needed to care for one’s
self is a process. This process begins at home and is emphasized
in summer camp and other youth programs. Parents and caregivers
should work collaboratively in fostering and encouraging independence
in the person with the bleeding disorder. An easy place to start
is to insist that your young child wear a Medic Alert bracelet
or necklace. A Medic Alert identifier is proven to provide rescuers
with vital information leading to proper medical measures being
taken.
Encourage your child to become a self-advocate.Beginning
at a young age and into young adulthood, let your child explain
his or her bleeding disorder to the teacher, coach, or baby-sitter.
Allow them to explain themselves to the best of their ability.
If they miss any important information, you may fill in the
blanks. Approach the local electric company, police, and fire
departments and register the current address where your child
is staying. This will allow crews responding to a power outage
or other emergency to know that this particular household has
special needs.
As your teen begins to drive, he or she can
carry a letter from his physician stating information about
his or her particular bleeding disorder. The letter should reference
the nearest Hemophilia Treatment Center and include pertinent
emergency phone numbers. Keeping this letter in the glove compartment
of your teen’s vehicle will ensure that it is available
when needed. As your young adult goes off to college, they should
have knowledge of the nearby hemophilia treatment centers with
directions and telephone numbers. Encourage your young adult
to make an appointment to visit the hemophilia treatment center,
introduce himself, and become familiar with the staff.
Another important aspect of transition is the
accessing information and bleeding log management. Accessing
health information with the Internet has changed communication
in today’s world. There is a variety of resources available
through the National Hemophilia Foundation, Hemophilia Federation
of America, and the World Federation of Hemophilia. Manufacturers
of coagulation products also offer a wealth of information specific
to their product. Another helpful tool is the management of
bleeding logs online. One of the benefits of the use of management
of bleeding logs online is the elimination of paper logs and
the added ability to keep the files up-to-date, even when traveling
between home and school.
There are many aspects to consider when transitioning.
Points of view that should be taken into account are that of
the parents or guardian, the medical personnel at the Hemophilia
Treatment Center, and, of course, the person with the bleeding
disorder. The road to help your child’s transition into
adulthood will vary from person to person and from family to
family. The process will not happen overnight. However, many
steps of the transition process can be started early, leading
to smoother progression. Have you started the transition process?
Is your young adult prepared for the future?
Insurance Questions to Consider
• How long can my child be covered under my private insurance?
• Must my son or daughter have to be enrolled in college
or secondary education program to have continued coverage?
• What happens when my child is no longer covered under
my insurance?
• Does insurance on college campuses cover care related
to bleeding disorders?
• Where can we find out more information about insurance
coverage for my child who is about to leave home?
• What if the job my child has does not cover care related
to bleeding disorders?
Privacy Questions to Consider
• How do I decide whom to confide in?
• What should I tell my college roommate when the factor,
ancillary supplies, and Sharps container are evident?
• Should I plan on requesting a single dorm room?
• How will my grades be affected if I am absent from class
due to my bleeding disorder?
• Who will assist me if I am not mobile due to a bleed?
• If my school has a “No-Cars-For-Freshman”
rule, can an exception be made? What are my reliable alternatives
for transportation to a hemophilia treatment center or hospital?
• Do I tell my boss and co-workers?
Resources for Transition
National Hemophilia Foundation
116 West 32nd Street, 11th Floor - New York, New York 10001
HANDI - National Hemophilia Foundation Information Resource
Center
Phone: 212-328-3700 - Fax: 212-328-3799 - Email: handi@hemophilia.org
Hemophilia Federation of America
1405 West Pinhook Road, Suite 101 - Lafayette, Louisiana 70503
Phone: 337-261-9787 - Toll Free: 800-230-9797 - Fax: 337-261-1787
info@hemophiliafed.org
PSI Patient Services Incorporated
P.O. Box 1602 - Midlothian, Virginia 23113
Phone: 800-366-7741 - www.uneedpsi.org
