Your Rights and Advocacy

Advocating for Your Child

The word “advocate” comes from the Latin word for “voice.” Being your child’s advocate means you are your child’s voice because they cannot speak up for themselves. All parents advocate for their children, but because children who are blind or has low vision may have special needs and require special services, their parents may need to advocate for them in additional ways.

Although laws such as the Individuals with Disabilities Education Act (IDEA) provide for your child’s education in this country, the reality is that there may be times when you believe your child would benefit from a specific service, professional consultation, equipment, or type of instruction that is not being offered to her. In those cases, you may need to advocate with school or medical personnel to make sure your child gets what they need. This may take place in a meeting of your child’s Individualized Family Service Plan (IFSP) team (or later with the Individualized Education Program (IEP) team) or directly with an administrator in your child’s educational program or another professional. Your special knowledge of your child and the importance of advocacy—and your right to advocate—are recognized in the IDEA legislation, which identifies you as a critical part of your child’s educational team.

Tips for Successful Advocacy

Regardless of the situation, the following suggestions can help you achieve what you want for your child when explaining her needs:

  • Know your child. All children have strengths and needs. As a parent, you know your child’s abilities and challenges more intimately than others. Be comfortable stating what you know to be true about your child. When dealing with professionals from whom you want services, be prepared to back up your views with medical reports or information, photographs, or video clips.
  • Do your homework. Know your child’s rights under the law. Also, learn about the services, equipment, or instruction that you want your child to receive so that you can explain how they will benefit her. You can gather information by talking with others, reading books and articles, and visiting websites. Make copies of relevant information for others to review. Try to formulate clear reasons for your requests.
  • Attend meetings. When your child is young, IFSP meetings will involve you because early intervention teams especially focus on working with families. Once your child is in preschool, her educational team can meet without you if you don’t attend. However, you will be notified when a meeting is to take place. Try to attend these meetings. If the time is inconvenient, it is important to notify the team and schedule meetings when you can be present. The meeting will then need to be rescheduled, and you will have made clear that you’re a concerned parent.

Finding Support

  • Build relationships. As your child’s advocate, it is important for you to build relationships with others involved in her life—educators, doctors, nurses, occupational therapists, or anyone else providing services to her and your family. They will be more open to hearing your point of view if they already know and respect you.
  • Acknowledge the viewpoint of others. Sometimes you and others involved with your child may have to “agree to disagree.” It’s important, though, that you hear each other out. Try to listen politely to the views of others and ask that they, in turn, listen to yours.
  • Be persistent. If you’re uncomfortable with a decision affecting your child, stand firm on what you’re asking for and restate your position. Be polite but persistent. You need not feel pressured into making decisions. It’s okay to tell people that you need time to think about something before agreeing to a course of action or signing a document that will affect your child’s education.

Being an effective advocate doesn’t require specialized skills or extraordinary capabilities. Nor does it need to involve attempts to influence programs and policies—although many parents engage in this level of advocacy. It simply means making the case, in a focused and informed way, that something is important and needs to be done for your child.

The interior of a school building.

IDEA: What Parents of Children With Blindness or Low Vision Need to Know About the Individuals with Disabilities Education Act

The IDEA ensures special education for children up to age 21, says the US Department of Education. It began in the mid-1970s, guaranteeing school-age children with disabilities a free, appropriate public education in a suitable environment, known as IDEA Part B. Later, in the mid-1980s, Part C was added. It offers states federal grants to […]

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In an effort to help you advocate for an appropriate education for your child, as is your child’s right due to IDEA Part B, let’s dive into the ins and outs of the Individualized Education Program (IEP) process, beginning with a look at its purpose, continuing with expectations of the IEP meeting, and concluding with […]

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Editor’s Note: Growing up with cerebral palsy and cortical visual impairment (CVI), high school Junior, Jaida, shares how she doesn’t see her challenges as “barriers”; she sees “puzzles” that she can solve. Jaida’s parents raised her to be a self-advocate. Starting in middle school, Jaida was empowered to share her story which inspired her to […]

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Parents teaching children to be their own advocate is the lesson of a lifetime

It’s not unusual for parents to advocate for their children, even if they’re not blind or low vision. But like many parents, Wendy Hardman and her husband, John did something even more valuable for their son, Cole: They taught him to advocate for himself from the start. Cole, now 34 years old, was born prematurely, […]

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Team Members

Each member of your child’s team will provide information important to the development of your whole child as they work towards independence, further education, and employment. Working with your child’s team will provide you with a support system to ask questions, better understand your child’s current abilities, and the next steps in your child’s education. 

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Your Child’s Educational Team

Understanding and Working with Your Child’s Teachers, Specialists, and Aides No one person has all the necessary specialized knowledge and skills to meet your child’s unique needs. For this reason, the ” team ” concept is fundamental when promoting your child’s growth, development, and learning. Throughout your child’s school years, you will be working with […]

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