HOT TOPIC: Parent Advocacy

What is an Advocate?
Advocates speak up for themselves or others to make things better.

Everyone is an “advocate,” although you may not realize that you have advocated at some point in your life for yourself and others. As a parent of a child with a disability, you have already spoken on behalf of your child—maybe to a teacher, day care worker, doctor, nurse, social worker, other parents, relatives, or friends. You speak up because you want something to change.

As advocates you can work to change “systems” as well as issues that affect your individual children. The systems that impact the families of children with disabilities can include schools, doctors, hospitals, county social services, government, health insurance companies, faith-based organizations such as churches, and others. Most of the time these systems are helpful, but sometimes they may not adequately meet the needs of your children and you may see the need to advocate for a system to change.

Six Skills to be an Effective Advocate

Skill 1 – Understanding your Child’s Disability helps you:

  • Know which services are appropriate for your child
  • Have high expectations
  • Find the right assistive technology (AT) and accommodations

Skill 2 – Know the Key Players – Ask:

  • Who is the decision maker?
  • Are staff people public, non-profit, or private employees?
  • How can you find a person’s name?

Skill 3 – Know your Rights and Responsibilities Learn about them by:

  • Reading web sites
  • Asking how the service is funded
  • Asking to see laws and policies
  • Asking questions
  • Joining a group

Skill 4 – Become Well Organized

  • Keep records
  • Put important requests in writing
  • Keep a phone log
  • USe a meeting notebook

Skill 5 – Use Clear and Effective Communication

  • Keep your eyes on the “prize” – the right service for your child.
  • Listen and ask questions
  • Focus on needs of the child
  • Problem solve together to find solutions
  • Speak clearly
  • Avoid making people feel defensive
  • Turn negatives into positives
  • Summarize what you hear

Skill 6 – Know How to Resolve Disagreements
Informal Processes:

  • Communicate with those working with your child

Formal Processes:

  • Mediation
  • Complaints
  • Appeals

Parents Can and Should

  • be firm but optimistic
  • recognize professional knowledge
  • resist quick fixes
  • expect change, but not miracles
  • don’t wait, but don’t panic
  • ensure everyone’s role is clear, and that someone acts as case manager/team leader
  • be realistic and reasonable in your quest for growth.

Information about the special education rules empower a parent to be their child’s champion and make positive change.

Parent Network has many resources to help support, educate, connect and empower parents and family members of children and youth with disabilities and learning challenges. Check out our website at http://parentnetworkwny.org/resource-library/.  You can also download this topic.