Advocacy Across the Lifespan at School, In the Community, and Beyond

Advocating for your child can be a full-time job, and it sometimes feels quite lonely. And this session, you will hear advocates from all seats at the table – self advocates, parents, teachers, therapist, and policy experts. We will talk about the various stages of advocacy across the lifespan, as well as specific advocacy tips.

Meet Kayla

Ashley Barlow (moderator), Kayla Schadegg, Jen Powers, Caitlin Smith, Jawanda Mast and Rachel Mast

award-winning special education teacher

Kayla Schadegg is a born-and-raised Kansan with a seven year streak of East coast living alongside her military spouse. A BSE graduate of Emporia State University, Kayla serves as the Director for a children’s fitness center, is a committee member for the Kansas State Department of Health & Environment’s Family Advisory Council, facilitates medical advocacy presentations for Down Syndrome Innovations, and sits on the board for the Ms. Wheelchair Kansas Organization. As the proud mother to a gorgeous little girl with Down syndrome, Kayla knows firsthand the impact of a diagnosis experience on a young family, whether pre- or post-natal. Through her platform, Strong Over Wrong, it is her mission to create a more compassionate and balanced diagnosis experience for families everywhere.

Meet Jen

I am an attorney and a mom to two kids with developmental disabilities. I am the new Southwest Regional Director of the Arc of Ohio advocating for people with disabilities and their families.

Meet Jawanda

Jawanda Mast is the National Down Syndrome Congress’ Manager of Grassroots Advocacy. Since her daughter Rachel was born with Down syndrome 23 years ago, she has been involved in the disability community as a parent, volunteer, leader, and advocate. She has a MS degree from the University of Arkansas. Jawanda and Rachel spent eight years advocating for the passage of the federal Achieving a Better Life Experience (ABLE) Act. She has provided testimony on a variety of federal and state policy issues and was recently appointed to the Kansas IDD Waiver Modernization committee. Jawanda is passionate about the meaningful inclusion of individuals with Down syndrome and other intellectual disabilities in all aspects of the community. She says her work is a #laborofloveandconviction

Meet Caitlin

I am a special education teacher with over a decade of experience. I am a mom of three, and one of my children has Down Syndrome. I serve as an advocate to a few local families and serve on the board at my local Down Syndrome Association.