Health Care for a Young Woman
with Complex Needs: A Mother's Perspective
The following was written by the mother of a young
woman with intellectual and developmental disabilities. It is intended
to provide users of this module with some personalized insight into
the experience of individuals with complex disabilities and their families,
and to provide strategies for ensuring patient- and family-centered
care.
My daughter has received lots of medical support in her 18 years. Typically,
as parents, we accept each new need, analyze options, and quickly make
the appointment just as if we are spokespeople for Nike's "Just Do
It" campaign. Dealing with the issues around women's health is a
much slower, deliberate process for us.
I'd love to say that there has only been one challenge or even none,
but that would not be realistic. Challenges have included Dad's fears,
Mom's fears, and fear of our daughter's fears by family and medical professionals
alike. It is easy to worry about the logistics of how to maneuver a wheelchair
in and out of a tight exam room. We know that an effort to provide medical
care without a transfer from the wheelchair may mean that we are probably
not accomplishing all that we need to. Other times, the barriers are in
paperwork and insurance. Unessential complications in the juggling of
resources can give the patient and family the feeling that their patient
should transfer to another healthcare provider!
Accustomed to a certain number of obstacles in obtaining necessary services,
we are willing to work at it. As a family, we identified some of the things
we could do to make women's health care for a patient with complex needs
as successful as possible. We worked to identify ways to increase our
teen's participation in responsibility for her health. Partial participation
is better than no participation. It was also important to start early.
For example, a caring artist in our community created a beautiful glass
bead 28 day scheduling system for my daughter that enables her to anticipate
her monthly cycle.
Other things can make the actual appointment more smooth and efficient:
- Schedule a preliminary visit to the office, as a rehearsal for the
real appointment. A frank discussion about whether extra time is required
for an appointment may be needed. As a parent, I appreciate professionals
bringing up this question. While extra time may be needed for the first
appointment or two, the time required can diminish after the first few
appointments.
- Practice a transfer. Each transfer in and out of the wheelchair calls
for attention to detail and valuable exam room time. Practicing this
on site without impacting the healthcare provider's schedule makes sense.
- Practice positioning. Identify and share the language that will help
to reduce muscle tone and ease positioning.
- Allow time for the patient to explore any educational models. The
familiarity with them will pay off in actual appointments.
- Discuss options that allow for appropriate health issues to be fully
addressed with the minimum invasiveness.
- Identify and discuss how to increase the patient's realistic expectations
of the appointment. Avoid surprises.
- Consider scheduling the actual appointment when the best assistant
(not just any assistant) can attend.
Finally, even with preparation and troubleshooting, issues may arise
that need to be addressed. To keep healthcare progressing, we need to
be ready to communicate. The idea for a minor tweak that improves the
medical outcome may come from the family, the medical office, or the patient.
This teamwork makes great women's healthcare obtainable for all.
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