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CDPP Family Advisory Committee 

· advocacy,family,special needs,community,research

The hospital.

The doctor’s office.

The in-school-team meeting.

The grocery store.

The playground.

The restaurant.

These are places where I have felt completely and utterly helpless at times. These are places where I thought I couldn’t speak out loud about the injustice going on involving my daughter, my family, and myself. These are some moments where I went home to cry, complain, and then re-create the scenario in my head again. These are times where I regretted myself for being silent.

Today, I know I have a voice.

I will raise it.

I will make myself known.

I will not back down.

I will not be silent.

Last year I wrote about how we can all take the initiative to move beyond awareness and make our community an accepting, inclusive space for families who live with disabilities. You can read it here. There are many children, youth, adults and families who have a voice but feel silenced by barriers within their communities. Outdated policies, language, shortage of resources, lack of support, and funding are some typical roadblocks in our journey.

I am part of the Canadian Disability Participation Project (CDPP) Family Advisory Committee. This committee has been launched to ensure parents and families who are living with disabilities have a voice when it comes to research. Why does this matter? Gathering information through research gives us evidence and information that can be used to plan and implement new programs, change the way we train staff to work with families with disabilities, or shape new or existing policies that impact the accessibility of our communities. Your voice and support is critical to ensure we create inclusive communities!

I’d like to pass the mic to Dr. Jennifer Leo who is the Director of Research at the Abilities Centre located in Whitby, Ontario. This centre is a state-of-the-art, fully accessible facility that delivers enriching sports, fitness, arts and life skills opportunities for people of all ages and abilities.

Over the past 15 years I have worked in the field of adapted physical activity, most recently (since 2012) as the Director, Research, Education, & Innovation at the Abilities Centre and as a member of the Family Focused Research team with the CDPP.

This means that I have been involved in doing research about and with families, disability, physical activity, and inclusion for a while. I am proud of the work we have done, focused on learning about the needs and experiences of children and youth with disabilities and their families. However, to create inclusive communities, in which all children, youth and their families can participate in a meaningful way (which is the focus of the Abilities Centre), we need to make sure that we are working on the right things. For this reason, we (at the Abilities Centre and the CDPP) have launched a Family Advisory Committee.

With the CDPP Family Advisory Committee, we hope to:

1. Connect with families at the beginning of the research process to help us generate ideas to do research that matters

2. Ask families about their thoughts, ideas, and experiences related to being involved in research studies

3. Consult with families to learn about the best ways to share the things we learn from research

4. Share information widely to inform and change the way we do physical activity promotion, practice, and policy.

Your voice is critical in helping us do this. We want to know about what matters to you. What do you want and need to ensure you and your child (or children) have access to the physical activity experiences that lead to belongingness and meaningful participation? We want to know how we can ensure professionals are trained and ready to support your family. We want to know how to share our research findings so that you have the knowledge and tools to make a difference in your own communities. We want to share what we find so that all communities are prepared to support the inclusion and participation of all children, youth and families, regardless of disability.

Here’s how you can help or become involved:

1. Join the CDPP Family Advisory Committee. This group meets virtually 4 times a year to discuss and share thoughts and ideas about research, disability, and physical activity in the community. Depending on your needs and interests, we can focus on specific topics that are important to you!

2. Participate in research studies that make sense for you and your family. There is lots of great research being done across Canada by researchers who want to make sure you and your family are able to participate in activities that are important to you and to improving your quality of life.

If you’re interested in becoming a member of the CDPP Family Advisory Committee, please contact me at jleo@abilitiescentre.org.

Since I work at the Abilities Centre, I wanted to share with you a couple of things about who we are and what we do:

1. We are a place for families. In the Whitby area? Come for a tour, drop in to a group fitness class or exercise on your own while your children (those with and without disabilities) participate together in one of our kids programs.

2. We’re all about social inclusion, quality of life and health and well-being. We want all members of our community to feel like they belong- whether that is during the day at summer camp (offered all summer long!), at an intro to parasport night, or as part of a school field trip- we want everyone to have a place to go to be active and healthy together.

3. We recognize that accessibility barriers don’t have to be there. We have a barrier-free, fully accessible building that is a great spot to host your child’s next birthday party.

4. We know that your children will not be children forever. We offer several programs, such as Thrive, to support young adults with disabilities as they transition from school to the community.

It is always a pleasure to share my #MomBehindTheLabel platform with others. Thank you Jennifer and the Canadian Disability Participation Project for contributing to this post. If you have any questions or comments please feel free to contact me!

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