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Parents
Taking Charge in the Medical Arena
By Calvin and Tricia Luker
Assuring appropriate care for and protecting the rights of
your child in hospital settings can be very difficult. Even
though there are many experts on medical care, there is only
one ongoing "expert" - and that is you. Hospitals and medical
people can be very intimidating. You need to arm yourself with
information and skills to do the best job you can for your
child.
Families have identified that obtaining information about
their rights and entitlements is their primary need when faced
with their child's hospitalization. The families' second need
is for help in getting appropriate services once they have
been specified.
You can tap many resources to help you solve basic problems
during a hospital stay. Hospital staff should provide
information on resources that may help you solve problems.
Think of these resources as tools you use to solve the
problems you and your child face. The fact is no one as
interested in these issues as you are. Be assertive in finding
and using available resources.
It is important to be informed about your child's care:
purpose of tests, procedures, medications, side effects, and
risks. You also have the right to request a second opinion,
and to question the doctor about concerns or things you do not
understand. By learning about the hospital environment and the
daily routines, and by asking questions and getting answers,
you may feel more in control and better able to deal with the
situation.
Many professionals, especially doctors, assume parents cannot
possibly understand the complexities of their trade. The more
specialized the diagnosticians, the less information they may
give to parents.
On the other hand, parents are expected to give legal consent
to their child's treatment and to sign release forms
permitting a multitude of others access to records they
themselves may be denied. Withholding information from a
parent makes the parent feel helpless and powerless,
intimidated and in awe of specialists. But this past
paternalistic practice on the part of physicians and educators
is no longer acceptable in today's consumer-oriented society.
PARENTS TAKE CHARGE!! Learn to keep records. As soon as you
learn that your child requires frequent health-related care,
start a notebook. List every professional your child sees; by
name, date and what you were told. Get copies of all clinical
reports. Document telephone calls you make or receive by date,
subject, with whom you spoke. Thorough documentation will help
you obtain services more quickly and back up any claim you
might have of insufficient services. You may want to use a
three-ring binder or folder divided into sections. You often
will be asked to provide information to a service program or a
new professional your child is consulting.
Never leave the office of a doctor or other health
professionals without understanding exactly what they mean. If
necessary, ask them to illustrate what they mean by giving you
an example. Knowing the correct terminology is helpful, too,
so that you can explain the situation to other professionals
such as your child's teacher. Being able to communicate in
their language gains you some respect too.
Obtain records of all testing from schools, whether
psychological, intelligence, behavioral, or vision and hearing
screenings. Take snapshots as you go along. It is a good idea
to keep a copy of medical and lab reports too. After all, the
information in these records is yours by law.
When you change residences, schools or doctors, a complete and
up-to-date file best assures that services for your child will
flow smoothly without needless delays. Persuasion, not anger,
will be your best tool when faced with the task of convincing
balky educators or medical personnel to see things your way.
With documented facts and past records to backing up your
position, they will take you seriously.
In summary, keeping good records gives you several advantages:
You can see and show your child's progress or deterioration;
You validate your right and ability TO BE PART OF THE
PROFESSIONAL TEAM;
You increase your ability to effectively link all of your
child's helping agencies together by keeping them abreast of
actions taken by the others. [ doctors, schools, therapists,
etc.]
You are better to convincingly press for those medical or
educational services your child needs but is not receiving.
educational services your child needs but is not receiving.
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