Family Road Map Guide

Passing Notes, Patient Portals
Always ask for a copy of any report or lab result. YOU HAVE A RIGHT TO
GET A COPY OF ALL DOCUMENTS ABOUT YOUR CHILD. Medical records are now
electronic (in a computer), but the office should make you a paper copy. Save this
in your binder. (Some people prefer to keep all records on their tablets or phones.
That is your choice, but paper is always a safe backup!) If there is something in this
report that another team member should know, write a note or email (if he or she
is a provider) to put the information in the child’s file.
Whenever possible, WRITE the information--don’t just tell it to
the person. Information gets lost, forgotten or misunderstood. Plus,
you may need a record later. Email is best because you have a record of what
you wrote. If you are not sure about what to include, ask the provider to help you
before you leave the appointment. If writing is difficult for you, find out if you can
get a case manager or an advocate from a local family organization to help you. Try
calling 211 on the phone or visit 211.org online to ask about resources for families
with special physical, mental health, or developmental needs.
Many health providers now use a patient portal to keep records and exchange
information with patients and family caregivers. In this system, you can sign
into a personal account that lets you find information, set up or cancel appointments,
and send messages to your health provider. If your pediatrician or other
health provider offers this system, sign up. If it seems confusing, ask someone
in the provider’s office to help you during the next appointment. This is one more
reason to keep a good relationship with provider support staff! They usually know
better than anyone else how their systems work.
Who Needs What
The need for a regular information exchange will vary according to who’s on your
team and what they need. Ask each team member, “Whom do you usually notify
about a change in my child’s treatment? Would you like to be notified when someone
else makes a change? How would you like to get this information? Should I
send it to you for my child’s file? Should I just bring it the next regular appointment?”
Here are some general guidelines for keeping the providers on your team
informed of important changes:
Forms, Forms, Forms
The Health Insurance
Portability and Accountability
Act (HIPAA) requires
health providers to get
your consent before releasing
information under certain
conditions. In general, you
will have to sign a release
every time information is
sent from one organization
(such as your doctor’s office)
to another organization
(such as the insurance plan
administrators). If you don’t
understand who will get this
information and for what
reason, don’t sign until you
get the answers.
For a MEDICATION CHANGE, tell:
• Other doctors
• Therapists
• Case Manager
• School personnel (This may include the teacher, counselor, or school nurse,
even if your child does not take these medications at school. Be sure to advise
them about possible side effects, such as sleepiness or excessive thirst
so they can keep you informed. When they tell you something you think is
important, keep health providers informed.)
• Church or after-school youth group leaders
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