Helping Parents Become Advocates for Their Child

"Parents are natural advocates for their children. Who is your child’s first teacher? You are. Who is your child’s most important role model? You are. Who is responsible for your child’s welfare? You are. Who has your child’s 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. It’s 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 child’s life.


The quote 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.

What are some of the functions of an "advocate"?


Instant Feedback:
The nurse who has a good overall knowledge of the child’s medical, developmental, and educational needs is the ideal advocate for that child.
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False


Pamela 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 child’s 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 child’s 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 support.

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:


Instant Feedback:
Parents of children with special needs face a multitude of stressors, and it’s too much to expect them to keep organized records and to prepare for meetings.
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False


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:

Instant Feedback:
It’s a good idea to write a follow-up letter to document requests for meetings, evaluations, or services.
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False


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 (Access 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 child’s health care insurer. Nurses working with families can share these simple yet effective parameters:

Instant Feedback:
It’s 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.
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False