Parents who take an active role in creating their child’s plan for services and supports will feel included and be better prepared to advocate for their child’s needs. This guide will give parents the tools they need to understand how to engage with teams to be an effective advocate for their child. Professionals who treat parents as respected partners and experts on their child will facilitate better planning, decision-making and support for families and better educational and developmental outcomes for children.

In addition to information about family engagement, perspectives from families, perspectives from professionals and questions to consider gauge how well family engagement is working. There are resources on many topics to support family engagement work. We hope this guide is used to strengthen family engagement, support confident parents, build strong relationships and engage in effective team decision-making.

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Lived Experience

A lived experience is the things that someone has experienced themselves, especially when these give the person a knowledge or understanding that people who have only heard about such experiences do not have. For families raising children with disabilities, lived experience can mean you have feelings of guilt, loss of opportunities, maternal sacrifice, worrying about the future, social isolation, lack of socioeconomic support, and stigma. It can also mean your family is strengthened by the challenge or you are happy and fulfilled when your child reaches an important milestone like talking or walking. 

What Families Should Expect:

Your lived experience is important and should be valued by professionals working with you and your child. Your lived experience has taught you so much about your child and their strengths and challenges, and your team members should use your knowledge to help make good decisions about services and supports for your child. Make sure you share your lived experience with your child’s team as you work to address your child’s needs. Find a way to share information that works for you. If you are not comfortable speaking up at meetings, share your information in writing or ask a trusted friend or advocate to attend meetings with you to help you feel supported and able to share information.

What Families Want Their Team Members to Know:

  • Sharing personal information about my child or family can be hard, especially in a large group of people at a team meeting. I may be sharing intimate details about my family life. Creating a welcoming environment at meetings will help me to share important information. You can make me feel welcomed by introducing yourselves, making sure I understand the meeting agenda and information and scheduling enough time so that the meeting is not rushed and all of my questions can be answered.
  • Raising a child with a disability is very stressful. Listening to professionals focus on my child’s limitations or problems is hard to hear and adds to the stress. You can make my lived experience better if you strike a balance in discussions during meetings. Remember to also focus on my child’s strengths and abilities when planning for my child’s services and supports.
  • I know my child better than any professional can. The information I have about my child’s abilities and challenges can help you make better choices about services and supports and will help you to understand my child’s likes and dislikes. Please listen to what I have to say about my child and use it to better serve my child.


What Professionals Want Families to Know: 

  • We know that what is happening with your child at home or in the community impacts how your child will do at school. You can help us meet your child’s needs by communicating with us about your child’s morning or evening. If your child struggled to sleep or had a bad morning, let us know so that we can provide more supports that day, and if your child had a great experience in the community, let us know so that we can reinforce that experience at school. 
  • Sometimes as professionals, we don’t know how to provide the right supports to you as a parent. We don’t know everything that is going on in your life. If you need extra support, let us know so that we can work to find that support. On-going communication about your family stressors and needs can help us be a better team. 

Questions to Consider

For Families:

  • Have I shared my lived experience with my team? 
  • Have I found a way to be comfortable in speaking up at my child’s team meetings? 
  • Do I share ideas with my team about how to best support my child based on my personal experiences about what works and doesn’t work for my child? 
  • Have I found ways to feel supported as a parent, and have I shared that information with my team? 


For Professionals: 

  • Has our leadership provided professional learning opportunities for staff to learn to support family needs? 
  • Have we organized our meetings to be welcoming to families, including creating agendas, introducing participants, diversifying participants, and cultivating a nurturing environment? 
  • Do we encourage team members to focus on the child’s strength as well as challenges in all that we do? 


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