Are you a parent that wants to advocate for change?

As a parent you have much to offer, teach, and share. You bring unique experiences, perspectives, and expertise. Everyone benefits when families and providers work together to improve healthcare, education, and community life for children with special health and/or developmental needs.  We hope to give you general information and guidance on what’s involved in becoming an effective family advisor, no matter what setting you choose.

 

A family advisor is a parent or other family member who draws on personal experiences to influence decisions and help shape programs and policies. This may include a wide variety of activities such as: being a member of an advisory council, board, focus group, community coalition or becoming a reviewer of written or web based materials, or being a program evaluator, teacher, trainer, speaker and/or mentor to other families.

By getting involved as a family advisor, you will:

  • Reflect and share personal experiences, observations and family perspectives.

  • Pose thoughtful questions and give feedback.

  • Suggest ideas and propose solutions.

  • Educate others.

General Guidance For Becoming A Family Advisor

Find opportunities to become a family advisor

Interested in becoming a family advisor? It makes sense to start looking for opportunities by contacting people and organizations that you know to learn about what opportunities might exist:

  • Ask other parents about ways to get involved.
  • Let your child’s health care providers, teachers, therapists and community service providers know you are interested in getting involved.
  • Contact community based organizations (ie. Parent-to-Parent, Father’s Network, Medical Home Leadership Network).
  • Talk with diagnosis specific organizations like the Epilepsy Foundation or Autism Speaks.
  • Look for opportunities at the Center for Children with Special Needs through Support Our Work.

Once you have found an opportunity in a family advising role, it is important to decide if it is the right opportunity for you.

Decide If An Opportunity Is The Right Fit For You

Becoming a successful family advisor is a role that most people grow into as a result of many factors, including:

  • Self-awareness
  • Listening and communication skills
  • Commitment to collaboration
  • Practice

When looking for or accepting family advisor roles, it is important to ask questions and get the right information so you are clear on what you will be asked to do.  Then you can decide if it is a good fit for you at this time.

Understand What Is Being Expected

Understand what is being expected:

Review the Basic Information Checklist for the Family Advisor.

Questions to consider include:

  • What is the purpose and format of the meeting or event?
  • When and where will it be and how long is the commitment?
  • Who will be there and what is important to know about them?
  • What would be your role?
  • How should you prepare?
  • Who would be your contact?

Ask yourself:

  • Is this important to me and is it something I want to do?
  • Will this work for me?
  • Do I have something to offer on the topic?
  • Do I have enough perspective on our family’s situation to effectively discuss the topic?
  • How comfortable am I talking about my child and family?

Consider How Much You Want To Share About Your Child And Family

Consider how much to share about your child and family

How much should you share about your child and family if you become a family advisor?  Talking about your personal experiences can be a very effective way to illustrate a point and influence people’s thinking.

 

Self-disclosure makes good sense when:

  • You’re at a time and place in your life where you have some perspective on your situation.
  • The story has benefit for others.  It’s not about your personal agenda, frustration, or current issue.
  • You feel ready to share it. Trust your instincts. Share those parts of the experience that you feel ready to talk about. It is fine to keep some parts private.
  • You are relatively comfortable talking about your experience.  You don’t feel overly vulnerable, exposed or shamed by sharing the story with others.

 

Guidelines for self-disclosure:

  • Stay with the focus of the conversation and the point you want to make – less is usually more.
  • Protect the privacy of others.  Be mindful about what details you share about whom.  Stick with YOUR experiences.

Tips To Prepare You For A Specific Family Advisor Event

Educate others by telling your story

Stories are an effective way to teach and influence people’s thinking. Stories are personal and their images stick with listeners in ways that abstract ideas and data don’t. Whether you are invited to tell your story as an informal talk to a few people or to give a formal presentation to a large group, the more prepared you are the better chance you have at delivering a clear message that makes an impact.

Here are a few tips to help you effectively tell your story as a family advisor:

  • Construct a story that will teach:  Take time to reflect on your experiences. Decide on the particular point you want to make. Write down a portion of your personal story that teaches that point. Try using the 4 step framework included in the handout to help you with this process.
  • Get the feedback you need:  Seek feedback from those you trust. Get it early on. Ask for what details you could leave out and what would make your presentation stronger.
  • Deliver a polished presentation:  Recognize this involves managing nervousness, practicing good communication skills and being prepared in case you get emotional.
  • Respond to questions and answers:  Anticipate what questions the audience might ask and think through how you would answer them. Listen well, be brief in your responses and positive whenever possible.

Whether you are asked to join a committee that meets on a regular basis or provide feedback in a one time focus group, or something in between, participating in meetings as a family advisor is important work.

A small but important shift occurs when you become a family advisor. You move beyond advocating for your own child and family to collaborating with others for the benefit of all children and families. To be effective in this role, you must have a strong sense of self combined with good listening, critical thinking and communication skills.

Participating In A Meeting

  • Begin slowly and thoughtfully:  Observe others and listen well. Ask thoughtful questions. Be mindful of how you communicate as this will go a long way to insuring your input is well received and on target.
  • Recognize there are different ways to give constructive input:  Support and affirm what is going well. Offer feedback based on your direct experience. Provide suggestions/ideas/potential solutions for the future and/or respectfully express your differing viewpoints.
  • Tell your story in 30 seconds or less:  Share a short personal story in order to help make your point, but be careful not to lose your listeners by including too much detail.
  • Be aware you may have an emotional response:  Discussions can bring back powerful memories that trigger emotions. Learn and practice what strategies for staying calm and grounded will work for you.

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