FACT Oregon: Empowering Families Experiencing Disability to Pursue Whole Lives

A story from Health & Education Fund Impact Partner FACT Oregon.

Three photos: One depicts a woman and child swimming together in a pool. One depicts an adult running, a child biking, and a youth using a recumbent bike, all wearing matching green t-shirts. And one depicts two youth running on either side of a third youth in a power chair, all three with race numbers pinned to their shirts.
When we received Lizzie’s diagnosis of Down syndrome just after her birth, I had no context for what it meant for her or us. I feared she might not walk, talk, or count to three. I did not know if she would make friends, play sports, or do homework. As her parent, my preconceived thinking about disability — my ignorance — could be the biggest limiting factor to her living a full, whole life. What do you DO with that?
— Elliott Dale

From diagnosis, disability is often presented as a deficit and a reason to segregate. This leads to lives of limited growth, social isolation, loneliness, poor health outcomes, and underemployment for too many Oregonians. FACT Oregon empowers families experiencing disability to pursue whole lives and change the trajectory for their kids to one of unlimited potential.

Parents are hungry for support, resources, and ways to engage in community. FACT Oregon provides trainings, peer-to-peer support, and community building programs for families of youth experiencing disability to help change life trajectories. We support families across all 36 Oregon counties and are parent-led. Our board maintains a majority membership of parents, and all leadership and program staff are parents of youth or young adults experiencing disability. Our person-centered, collaborative support services and trainings cover special education, assistive technology, behavior as communication, inclusive recreation, disability awareness, becoming a welcoming community, family networking, navigating disability service systems, person-centered planning, transition to adulthood, and more.

We are experiencing record-breaking call volume, with a 32% growth in calls from families seeking support over the last year. One question we often ask families when they call or attend a training is: "What is your vision for your child's future?" That one question reminds families that they have the power to change trajectory, to hold high expectations, and to give their kids the opportunities they need to live whole lives of self-determination and inclusion.

One of our newest programs, the All Ability Tri4Youth, helps improve the health and well-being of young people experiencing disability by encouraging physical activity in community. A major factor in the high obesity rate for people with disabilities is limited access to sports and recreation. FACT Oregon's All Ability Tri4Youth, the only barrier-free triathlon on the West Coast, actively demonstrates how to design programming that welcomes people with disabilities more fully into sports and recreation. Participants get a chance to explore swimming, biking, and running, and families connect with local sports and recreation resources that their youth with disabilities can access.

Elliott’s story didn’t end in fear and ignorance. He got involved in FACT Oregon, currently chairs our board, and is on a journey, living a whole life:

Our family was fortunate to connect early with people who helped us challenge our norms. People who held high expectations, showed us that disability is natural, and modeled how to navigate the next step for Lizzie and the step after that. These are the people and families of FACT Oregon. Today, Lizzie counts, she runs, she has play dates, she has ballet practice and plays soccer, she does homework. And she is in first grade in a typical class in our neighborhood school— the first child with Down syndrome to attend for as long as anyone can remember. The people at FACT Oregon helped us make that happen.

Find out more about FACT Oregon at www.factoregon.org, and register today for our All Ability Tri4Youth, which will take place August 10, 2019 at Tualatin Hills Athletic Center in Beaverton.