8:30 am - DS-ASD 3-21 Toolkit of Strategies
Learn practical strategies and ways to support individuals with a dual diagnosis of Down syndrome and autism (DS-ASD). This session will focus on three areas impacted by DS-ASD and what parents, teachers, and professionals can implement across all environments to help better navigate a dual diagnosis. Participants will also receive a list of 21 practical tips, strategies, and resources.
Presenter Information:
Teresa Unnerstall is the DS-ASD Consultant for DSCBA and the author of A New Course: A Mother’s Journey Navigating Down Syndrome and Autism, published in 2020. Since 2012, Teresa has been writing a blog about her son Nick and topics related to DS-ASD at www.nickspecialneeds.com. Teresa has presented workshops and webinar trainings for NDSC, NDSS, DSCBA, MDSC, and universities across the country, along with making numerous podcast appearances. Teresa serves on the board of directors for the Down Syndrome-Autism Connection.
10:15 am - Transition From Pediatric to Adult Healthcare
Join Dr. Noemi Spinazzi to hear about the transition from pediatric to adult healthcare. In this session you’ll learn how health needs change from childhood to adulthood, what that means for your child, and how best to prepare for it.
Following Dr. Spinazzi's presentation, you’ll hear from Dr. Barry Martin and Dr. Moya Peterson about GLOBAL Medical Care Guidelines for Adults and the NEW Family-Friendly version.
Presenter Information:
Noemi Spinazzi, MD is a primary care physician at UCSF Benioff Children's Hospital Oakland. She provides primary care services to hundreds of children with complex care needs and developmental disabilities, and she founded a specialized clinic serving patients with Down syndrome. She is also the director of the developmental and behavioral pediatrics resident rotation at Children's Oakland.
Barry Martin, MD, is Board Certified in Family Medicine. He has more than 25 years’ experience providing primary health care for adults with developmental disabilities, including several hundred patients with Down syndrome. He served as medical director of the former Denver Adult Down Syndrome Clinic for 10 years. Currently, Dr. Martin is an assistant professor of general internal medicine at University of Colorado School of Medicine, where he sees patients for primary care and for consultations. He is also the lead physician for the Adult Down Syndrome Clinic at Denver Health. Dr. Martin is a member of the National Down Syndrome Congress and the Down Syndrome Medical Interest Group.
Moya Peterson, PhD, ARNP is the director of the Adults with Down Syndrome Specialty Clinic and a clinical associate professor at the University of Kansas Medical Center. She completed her dissertation in 2009, on the topic of adults with Down syndrome. In 2011, she started a primary care clinic for adults with Down syndrome within the Department of Family Medicine at the University of Kansas. Peterson has been involved in the care of people with Down syndrome for most of her professional career. She started by caring for children with Down syndrome at Children’s Mercy Hospital in Kansas City, Missouri, as a staff nurse. She has been involved with adults with Down syndrome in the community for a long time and then the natural progression was to start a clinic for their healthcare. Her clinic is growing steadily, and she enjoy this population so much.
Peterson has been active in the Down Syndrome Medical Interest Group for a number of years. She has developed a libguide, for professionals and parents, of articles that have been published recently about adults with Down syndrome.
In 2018, Peterson received the Lillian Carter Exemplary Acts in Nursing award. She continues to develop resources to provide the most up-to-date care for adults, as well as provide them with resources for their adult lives. She frequently speaks at various community organizations as well as groups within KUMC on the topic of adults with Down syndrome.
1:00 pm - Advocacy Round Table: Your Story. Your Voice. You Make the Difference.
Mother and daughter team Jawanda and Rachel Mast are passionate about the meaningful inclusion of people with Down syndrome and other intellectual disabilities in all aspects of the community. The two of them have been advocating together since Rachel was young. They worked alongside advocates from across the country for more than eight years to pass the Achieving a Better Life Experience (ABLE) Act, allowing individuals with disabilities to save money in 529-type accounts without jeopardizing means-tested benefits. Because of her work on passing the ABLE Act nationally and in Kansas, Rachel became the first person to open a Kansas ABLE Savings Account.
Each of us has a story. When we tell those stories, we can use our voices to impact policy change on the local, state, and federal level. Jawanda and Rachel will share proven advocacy tips that will help you learn to use your story to impact change and embrace the idea that one person’s voice can make a difference.
Presenter Information:
Jawanda Mast is the National Down Syndrome Congress (NDSC) Manager of Grassroots Advocacy and works with families and organizations across the country on how to effectively advocate for individuals with Down syndrome and other intellectual disabilities. She says her work is a #laborofloveandconviction.
Rachel Mast, who has Down syndrome, is twenty-three years old and a graduate of Olathe South High School in Kansas. She works as a patient greeter at the University of Kansas Medical Center and dreams of living in a pink house.
2:00 - The View from Beyond Twenty-Two
Directly from the sources, come hear diverse perspectives and experiences about life after the age of twenty-two! You’ll hear from a panel of adults with Down syndrome, as well as from some parents, about various paths they’ve taken: day programs, post-secondary schooling, living outside of the family home, vocational experiences, and of course the social scene! More and more options exist nowadays, and no one path is right for all. Consider what to think about when determining the best individual match. Note: Though specific programs will be discussed, this event is intended to provide a general look at options after age twenty-two, not to provide detailed information about individual programs.
Presenter Information:
Moderated by Marianne Iversen, Director of Teen and Adult Services for the DSCBA, and Jennifer Cooper, former Director of Education for the DSCBA and mother of Eli, one of the DSCBA’s adult self-advocates.
3:30 pm - Empowering Independence from Toddlers to Adults
It’s never too early to start teaching independent living skills—and it’s never too late. Wherever you are on your journey to independence, just start! This presentation will highlight chores, money, self-help, work and employment, real-world applications, and supported independent living, as well as other empowering elements for amazing results with our amazing children. We’ll also review the insurance and regional center supports available to help support independence for all. You can do this!
Presenter Information:
Sandra Assimotos McElwee is Sean’s mom, from the TV show Born this Way. She is an independent facilitator writing person-centered plans for Regional Center consumers entering the Self-Determination Program. Sandra is the author of three books—Who’s the Slow Learner? A Chronicle of Inclusion and Exclusion, Who’s the Slow Learner? Adventures in Independence, and My Name Is Sean and I Have Something to Share—all written about her son Sean. She supports Sean with his T-shirt business, seanese.com, and his keynote speaking; her title is Chief Dream Facilitator.
LaTaasha Byrd is a mom to one daughter, born with Down Syndrome. She holds a Bachelor of Science degree from Florida Agricultural and Mechanical University and a Master of Science degree from the University of Central Florida. She hails from the metropolis of Monticello, Florida, where she learned the values of small-town life and a love for country living. She is a proud, self-proclaimed “Mom-Schooler” and chronicles the journey of homeschooling a child with exceptionality in her Facebook blog, Countdown To K. She regularly speaks at conferences and advocates for the special needs community at local, state, and national levels. She frequently works with local nonprofits in the areas of cultural outreach. She is the headmaster at Countdown Academy, an online school for parents of exceptional children. She is the author of Inclusion Is for the Included: A Collection of Stories from a Special Needs Mom. Together, she and her daughter reside in Orlando, Florida, where they enjoy many activities in the Florida sun.
