Advocacy 101 for Families with Infants and Toddlers

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Some Advocacy 101 tips are shared in this quick, user-friendly article! Helpful topics include: what advocacy is, why it is important, characteristics of successful parent/professional partnerships, strategies to help achieve effective advocacy, addresses some frequently asked questions about advocacy, and shares several online and print resources!  Enjoy!

What is advocacy?

The word advocacy can mean different things to different people. Quite simply, advocacy means to actively support an idea or a cause.

 

Parents of children with disabilities often find themselves in the role of being an advocate for their child as well as the disability community as a whole as the two are intertwined. It is largely because of the work of parent advocates that children with disabilities were first allowed to attend public schools in 1975 when Public Law 94-142 was passed. This law was revised and called the Individuals with Disabilities Education Act (IDEA) in 1997, and re-authorized in 2004. For more information on IDEA, please visit the US Department of Education’s website.

Why do I need to advocate for my child?

IDEA states that parents are equal members of the Individualized Family Service Plan (IFSP) team. This is because parents know their child best and will always be a part of their child’s life, unlike professionals who generally interact with a child for a year or two. IDEA recognizes that children are most successful when parents and professionals form partnerships to identify the strengths, needs, and developmental and educational goals for children with disabilities.

What are the characteristics of a successful parent/professional partnership?

  • Open, honest, and effective 2-way communication
  • Mutual respect for the role and expertise that parents and professionals bring to the IFSP process and meetings
  • Both parents and professionals being knowledgeable of IDEA and the families’ rights
  • The ability to resolve disagreements in a quick and efficient manner
  • Maintaining a child-centered focus

How do I effectively advocate for my child?

Advocating for your child can be an intimidating process. It takes practice. The most important thing to remember is that your contributions, ideas, and opinions matter! Your ability to effectively advocate for your child will impact his/her entire life. Here are some suggestions for effective advocacy strategies:

  • Develop relationships. Get to know the members of your child’s IFSP team.
  • Practice good communication skills. Listen. When you are unsure about something, ask.
  • Know and understand your emotions.
  • Share with your child’s team how you help your child at home.
  • Learn good conflict resolution skills and understand the dispute resolution process as defined by IDEA.
  • Understand your parental rights as defined by IDEA.
  • Insist on natural environments for your child’s services. Natural environments means, “providing services in the home and community settings in which children without disabilities participate.”
  • Inquire about assistive technology and how it might help your child. Assistive technology (AT) can be thought of as any item that supports a child’s ability to participate actively in his or her home, childcare program, school, or other community settings. It is a broad term that includes items ranging from something as "low tech" as a foam wedge for positioning to something as "high tech" as a power wheelchair for independent mobility.
  • Keep in mind a vision of your child’s future and what you want for him/her. Share this with the IFSP team.
  • Be specific about how you want the team to communicate with you- in person, over the phone, via email, etc. and how frequently.
  • Don’t be afraid to disagree. Use phrases such as, “I’m not sure I see that. Tell me when you see it happening,” or “Tell me more about why you think my child needs this intervention,” as ways to skillfully discuss the disagreement.
  • Keep meetings and discussions child focused.
  • Stay organized and keep records. Take notes at meetings and on phone calls and keep evaluation data and other IFSP documents.
  • Be prepared. Come to meetings with an agenda of items you want to make sure are discussed.
  • Put requests and questions in writing.
  • Get support if you need it from a friend, family member, or professional advocate.

FAQ’s:

Question: "Doesn't advocacy just lead to conflict?"

Answer: This is a common concern for people when they hear the word advocacy. Sometimes actively supporting your point of view will lead to conflict/disagreement, and sometimes it won’t, depending on your individual situation and IFSP team.   The thing to remember is that conflict and/or disagreement is not necessarily a negative thing. When done skillfully, everyone, especially your child, will benefit from all sides of an issue being discussed.

Question: "How do I raise a self-advocate? What can I do to help my child grow up to become an empowered self-advocate?"

Answer: As your child becomes older, you can teach him/her to be a self-advocate. The best way to do this is to first learn to be an effective advocate yourself. Your child will learn by watching you. When it feels right, start including your child in meetings and discussions about how he/she learns, what strategies support his/her learning, what his/her interests and strengths are, and what vision he/she holds for the future.

Question: "Where can I get more information on advocacy and effective advocacy strategies?" 

Answer: The following organizations, publications, and resources can be helpful:

 

Don't forget that PEAK Parent Center is also here to help!  Call or email a PEAK Parent Center Parent Advisor for more advocacy strategies for working with schools – by email This e-mail address is being protected from spambots. You need JavaScript enabled to view it or by phone 800.284.0251.

 

PEAK Parent Center www.peakparent.org - Summer 2011 SPEAKout Newsletter

Copyright 2011 © by PEAK Parent Center, Inc.  All rights reserved. Permission to reproduce may be obtained from PEAK Parent Center.