No post in July.
I have been working on an article for Building Blocks Magazine, a quarterly periodical focused on
individuals with special needs and developmental diagnoses, using my last post
on suggestions for parents to help their children manage news and media
anxiety. It is scheduled to be
published in their upcoming September, 2017 issue and I will have copies in
both their downloadable and published form for you to use.
In the meantime, I have been doing some research in response
to numerous parent questions about explaining confidentiality to their child
with developmental diagnoses.
Somewhat surprisingly, there is not much information available, let
alone resources, to assist parents and, critically, service providers such as doctors,
lawyers, and mental health professionals, in explaining the hugely important
topic of client information privacy.
It is all the more surprising considering all the ethical and legal
implications of client-professional privilege and regulations around the
protection and sharing of private information.
As we all know, the term “confidentiality” is, as we
believe, relatively straightforward and means that “the information revealed by
a patient or client to a professional is private and has limits on how it can
be shared with a third party, usually requiring knowledge and consent of the
individual before being shared”*.
Of course, concrete definitions have to be subject to rules and
regulations that facilitate professionals in these relationships to do their
jobs, namely communicating important information to other providers and family
members that may assist in the care or advocacy of the individual. Often times, such information may be
considered private by the individual in the care of these providers and
therefore fall under the scope of “confidential information”. What the individual may reveal to
his/her therapist, he/she may not reveal to their primary care doctor. However, this information may be
critical to the doctor’s ability to provide competent, comprehensive care to
the individual, leading to a most necessary document called a “release of
The complexities of multi-systemic care for individuals with
developmental diagnoses, particularly children, make the understanding of confidentiality
and use of releases of information critical to the child and family. It is all the more important when
considering children generally do not, due to their developmental/cognitive
stage, grasp the more abstract aspects of implications and consequences
stemming from confidentiality around private information beyond a basic
understanding of the concrete definition “My information is private and not to
be shared”. Consequently, children
and those with developmental diagnoses may not understand the importance of
sharing information with providers or the limits on sharing and may run the
risk of sharing too much; the consequences of doing so are often irrelevant or
not understood in that moment.
Helping children with developmental diagnoses understand
confidentiality and its uses and limits, along with release of information, is
important to ensuring smooth flow of helpful information to all service
providers so the best care can be given.
Since many children with developmental diagnoses often struggle with the
pragmatics (day-to-day appropriate usage) of social interactions, and the crux
of confidentiality is the appropriate management and protection of information
shared in a social setting, a social story can be an excellent tool for
teaching your child about confidentiality, its uses, limits, and most,
importantly, its relevance to the them.
I have created a social story, which you can find at the end
of this post, explaining confidentiality and explaining releases of information. Please note that social stories are
more effective when images are included to help establish the retention of the
concept; I have purposely not included images with this story for that very
reason. You know your child best
and what visuals they respond to best.
Please use the stories and add your own images that your child will
respond most to. The story can be
used as is or broken down into confidentiality and parental consent and
releases of information, depending on how your child processes
information. The story will be all
the much more powerful. Also
remember that you can tailor this social story to a specific provider or
providers as you need to. I have
opted to use “therapist” for purposes of creating the example. The stories here are templates and more effective
when made relevant to your child’s situation. Lastly, your use of the social story will be enhanced if you
introduce it in advance of the situation where your child needs to know about
confidentiality and releases of information. Please refer to my post about social stories for further
information and suggestions. Good
luck and remember that understanding confidentiality does not need to be
complex or something requiring memorizing government regulations!
LET’S LEARN ABOUT CONFIDENTIALITY AND SHARING PRIVATE INFORMATION!
Today I am going to meet with my therapist for the first
A therapist is someone who is specially trained to work with
children, like me, deal with tough problems happening in my life.
Some examples of tough problems a therapist can help me with
include dealing with bullies, being in charge of my emotions and understanding
them, and how to express myself appropriately.
When I meet with my therapist, I am creating a special
relationship where I can trust them to help me and I can share what is bothering
me. I know they will listen to me
This type of special relationship is called a client-patient
Because of this relationship, my therapist and I are able to
talk about my (insert what child is seeing therapist for) together. The information
I share will remain private and will not be shared with anyone.
My therapist will not share what I tell him/her with anyone
else because it is CONFIDENTIAL.
This protection of my private information by my therapist is
I understand that I do not know my therapist when I start
working with them. My therapist
understands I may need time to trust them before I will be willing to share my
private information (insert what child is seeing therapist for).
The more comfortable I am with my therapist, the more
private information I can share with them about my (insert what child is seeing
therapist for). My therapist can
be more helpful to me when I share information with them.
Because of our special client-patient relationship, my
therapist understands that it is very important to keep what I share with them
private so I feel comfortable sharing (insert what child is seeing therapist
My therapist knows not to share what I tell them unless I
tell them they can do so. This is
called giving permission.
My parents are also responsible for keeping my information
safe since they take care of me.
When they give permission to my therapist to know my information this is
called PARENTAL CONSENT.
is very important because my parents have to decide who can know my private
information so they can give me the best help. They consent to providing
information about me because they believe it will allow others to help me.
There will be times when it will be important for my
therapist to get consent so he/she can share information from my parents with other
individuals who help me such as my doctor, school teacher, or school
counselor. He/she will talk to my
parents to get permission to share my information.
My therapist needs to share information that helps keep me
safe, such as if I tell them I am being bullied, or if I am in danger, and to
help my other care providers do the best job they can taking care of me. (You can add your own relevant
In order for my therapist to share my information safely, my
parents need to sign a RELEASE OF
A release of
information allows my parents to give permission to my therapist to speak
only to care providers my parents and I want him/her to speak to.
My parents and I will describe what information my therapist
can share with other care providers on the release
of information before signing it.
I know my parents and therapist will help me understand why
my information is being shared and answer any questions I have.
Confidentiality, parental consent, and a release of information are very
important and are required by law.
I can feel comfortable working with my therapist knowing
he/she has to follow the law and wants to help my parents keep my private information
END OF STORY
"© Jonathan Rhoads (2017) PERMISSION TO USE OR
MODIFY GRANTED IF CREDITS ARE MAINTAINED"