Advocating for Mobility and Independence



In our fourth episode of the 2021 Advocacy Series podcasts, IFOPA Family Services Coordinator Karen Kirchhoff speaks with FOP mom Lisa Gillooly about her experiences advocating for her daughter Sara's equipment needs. Lisa shares stories of Sara's early exposure to tools, the trials and errors of finding tools that worked, and how the family made including Sara in family and community activities a priority. As Sara grew older and FOP began to limit her mobility more, Lisa reflects on the ups and downs they went through learning to navigate the healthcare system for access to more advanced equipment.

Begin Practicing Simple Strategies To Advocate For Your Mobility Needs

Download this quarter’s Advocating for Mobility & Independence Resource Worksheets (pictured right) and complete the prompts and activities. This can help you start prioritizing resources, tools or adaptive equipment you would like to pursue in order to assist with mobility and participate in activities you enjoy. This PDF can be printed and filled in by hand or completed on your computer using free Adobe software you can download at Adobe Acrobat Reader.

Community Panel

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This topic's community panel was integrated into the 2021 Virtual Family Gathering's presentation, "Living Well With FOP". Take a moment to hear Kristi Gonzales share how she advocates for her son AJ's independence at home, school and in adaptive sports. Emma Albee shares the tools and strategies she uses to assist with mobility and independence at home, work and with her favorite hobbies. Lastly, Laurent Gouy from France shares how he advocates for independence in his home, his community and the adaptations he makes to compete in his favorite sport, competitive blowgun shooting.  

Resource Webinar

Download the slides from this topic's resource webinar here to follow along as you learn about the various steps of a wheelchair evaluation. Planning well in advance of your evaluation and speaking up for yourself as part of the seating team gives you a much better chance of getting a chair with all of your wants and needs. Your wheelchair will likely be your most important mobility device and your ability to advocate for features you need can make a huge impact on your independence.

For more information about the program or to share your experience as an advocate, please contact IFOPA Family Services Manager Hope Newport or Family Services Coordinator Melissa Davis.

Read more about The Advocacy Series.

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