Parents Become Advocates for Their Child
are natural advocates for their children. Who is your childs first teacher?
You are. Who is your childs most important role model? You are. Who is
responsible for your childs welfare? You are. Who has your childs
best interests at heart? You do."
Nurses who work with families
of children with disabilities have an important mandate to improve the parents
ability to advocate for their child. Its tempting, of course, to make
a few phone calls and quickly obtain a needed resource for the child. In the
long run, however, this strategy leaves family members ill-prepared to cope
with the complex life decisions that will face them during the childs
at the top of this page is from (from
the Wrightslaw.com website "Advocating for Your Child") Please
review the article and be prepared to answer the following question.
are some of the functions of an "advocate"?
nurse who has a good overall knowledge of the childs medical, developmental,
and educational needs is the ideal advocate for that child.
Darr Wright identifies accurate information and support as the cornerstones of
advocacy: "Becoming an advocate means becoming an expert, in the course of
your journey, you need to learn all that you can about your childs particular
disabling condition and how this condition can be remediated...The journey is
more difficult if it is taken alone (Click
here to view the entire article at the Wrightslaw.com website.)
Nurses working with the
parents of a child with disabilities can provide information about national
and local organizations that deal with the childs specific issues. The
nurse is also ideally qualified to provide the information that parents need
about particular issues and concerns, in the right format, at the right time.
The websites listed at the end of this program are
wonderful resources for a wealth of disability-related information and parent
Stengle (1996 ) has identified
eight skills that will enable parents to effective advocate for their children.
Nurses working with the family can be valuable coaches to demonstrate the importance
of these skills and mentor parents in skill development:
- Become knowledgeable
about your childs rights.
- Keep records in one place.
- Get it in writing.
- Keep a telephone log.
- Go to meetings prepared.
- Take a friend.
- Be a good communicator.
- Know when enough is enough.
of children with special needs face a multitude of stressors, and its
too much to expect them to keep organized records and to prepare for meetings.
F. Ramos, parent of a child
with sensory integration dysfunction, recommends writing certified letters to
serve as a record of what was said during a conversation or meeting. He defines
five situations that call for the clear documentation that a letter can provide:
- Requesting information,
such as medical or educational records.
- Requesting a meeting.
- Requesting an evaluation
to determine the childs eligibility for specific services.
- Requesting a service,
including therapy or adapted programs.
- Documenting a problem.
a good idea to write a follow-up letter to document requests for meetings, evaluations,
Attorney Jennifer Bollero has
written a wonderful set of guidelines for parents to follow in meetings that are
held at school to obtain educational resources for children with disabilities
the Wrightslaw.com website for Bollero's article.)
These guidelines can easily be adapted for appointments with physicians, evaluations
by medical and developmental experts, and meetings with the childs health
care insurer. Nurses working with families can share these simple yet effective
- Make every attempt to
- Keep the focus on the
childs needs, not the districts resources or the parents
- Always provide "face-saving"
ways out of a dilemma. Have a back-up plan.
- Build your record with
accurate, objective information.
- Walk a mile in the other
sides moccasins; try to understand the other point of view.
- Listen actively, especially
to the things you do not want to hear.
- Encourage everyone to
love your child, then let them.
- Have a little faith.
up to the professionals working with children with disabilities to come up with
solutions to difficult problems, and parents should not be expected to work
hard at problem-solving.