A Tool for Families
by Pam Cook, M.Ed. and Ellen Kosh, R.N.
Advocacy is defined as speaking or acting on behalf of another individual or group. Families of children with disabilities advocate on a daily basis for their children when they speak with teachers and health care professionals or attend meetings regarding their children. For parents to participate in decisions affecting the education and care of their children, knowledge and organization are essential.
To become informed and effective advocates for their children, families are encouraged to "build" an advocacy notebook. By maintaining and updating this notebook, parents will always be prepared to provide information to their child's teachers and health care professionals. By organizing the information and taking it to meetings regarding the child, a parent will appear (and feel) prepared and well-informed. Much of the information needed to become an informed advocate is available free of charge from many federal and state agencies. The Internet offers a wealth of valuable information to families of children with disabilities.
The following simple instructions will assist you in creating your own advocacy notebook:
1. Place a photo of your child in the clear plastic pocket of the cover of a 2-inch three-ring binder. Even if you believe a 2-inch binder is too big - buy it anyway. Eventually, you will need it!
2. Place tab dividers in the notebook. You may use the following suggested topics: (You may want to print out each page [a - e] to place after each tab divider..)
a. Information for Families- information that personally relates to your child's education and medical status such as his IEP (Individualized Education Program), copies of all correspondence to and from school, report cards, evaluations (psychological, psychiatric, speech, etc.) and a phone log to record the date, time and subject of all school calls regarding your child. Be sure to keep reports of academic or behavioral problems. They may help demonstrate that your child is in need of special education services or additional support.
b. Information for Educators - information regarding your child's disability to share with your child's teachers and principal.
c. Community and Transition to Adult Life Resources - information on transition and organizations in the community that can provide legal, medical, or educational assistance and support groups.d. State and Federal Laws - information regarding State and Federal education-related laws including the 1997 IDEA (Individuals with Disabilities Education Act) Amendments, Section 504 of the Rehabilitation Act of 1973, and the ADA (Americans with Disabilities Act).
e. Education, Advocacy and Health Resources - phone numbers and web sites of national, state, and regional organizations which can provide information and support for your child.
f. Notes (Include notebook paper or a removable three-ring spiral notebook to take notes at meetings or lectures.)
3. Collect information for your notebook. Include things that are relevant to your child and child's school and district. Call or email for free information listed in each section.
If you find a particular piece of information helpful, share it with other parents and professionals.
Remember organization and information are the keys to success.
Adapted from "The Advocacy Notebook: A Tool for Parents", by Pam Cook and Ellen Kosh, CH.A.D.D.er Box, February, 1993.
Partners in Education Tutorial - a self-study online course designed to help parents of children with disabilities navigate the special education system.
Emotions to Advocacy: The Special Education Survival Guide
by Pam and Peter Wright, 2001. For detailed description of book contents,
on link or call toll free: 877-529-4332.
·From Emotions to Advocacy (companion web site to From Emotions to Advocacy book)