9:30 am - Keynote Address - Frank Stephens, Disability Advocate, Actor and Athlete
Presenter Information:
Frank Stephens is a disability advocate, actor, and athlete. He is an ambassador for Global Down Syndrome Foundation. In 2017, Frank testified before the United States Congress, where he received a standing ovation for his passionate speech about the importance of Down syndrome research and his powerful statement: “If you take one thing away from today, I want you to know that I am a man with Down syndrome and my life is worth living.” Frank is also well known for the 2012 open letter he wrote to Ann Coulter about her public use of the R-word. He has competed in equestrian events in the Special Olympics and served on the board of Special Olympics Virginia. He has acted in multiple community theater plays and has had roles in feature-length films including Touched by Grace and Dawn.
10:00 am - Preparing for Team Meetings: The Parents’ Report to the IEP Team
Parents are often an excellent source of accurate information and knowledge about their child. They accumulate this knowledge in various ways. They interact every day with their child in a variety of environments. They watch their child interact with others in the community and during leisure activities. They discuss their child’s abilities and challenges with medical and related providers, teachers, administrators, extended family members, and strangers.
While great information-gatherers, parents may not know how to organize their valuable information systematically and may not know how to convey their knowledge of their child professionally. To be considered equal educational team members, it is valuable for parents to learn to think of their chid’s education in the same way they would any critical business transaction. In this session, participants learn to prepare a written document for the IEP team that clearly and convincingly conveys their knowledge and concerns, hopes, dreams, vision, and plans for their child.
Presenter Information:
Patricia Johnson Howey has a B.A. in paralegal studies from Saint Mary-of-the-Woods College and is a member of Lamba Epsilon Chi. She is an Indiana registered paralegal, an affiliate member of the Indiana and the American Bar Associations, and a nationally known parent advocate with more than 35 years of experience helping families. The author of Special Education: Plain and Simple and Special Education, The Commentary series, Pat also has numerous articles published on the Wrightslaw website. Pat has been a member of the Wrightslaw Speakers Bureau since 2005 and has presented on special education law and advocacy from coast to coast. Pat is a charter member and past Director of the Council of Parent Attorneys and Advocates (COPAA) and was a faculty member of the Institute of Special Education Advocacy at the College of William and Mary Law School in Williamsburg, Virginia, from 2010 through its closing in 2021. She currently works as a paralegal in the education division of the Connell, Michael, Kerr Law Firm in Carmel, Indiana.
12:00 pm - Ways to Connect Round Table
While you eat lunch, join Cathleen Small and Marianne Iversen for a casual discussion of the opportunities for kids, teens, and adults to connect. We’ll talk about groups and recreation activities available.
Presenter Information:
Cathleen Small is the Director of New and Young Family Services at the DSCBA. Her son Sam has Down syndrome and autism and is ten years old. Marianne Iversen is the Director of Teen and Adult Services at the DSCBA.
1:00 pm - Supporting Positive Behavior in Children and Teens with Down Syndrome: The Respond but Don’t React Method
Behavior problems impact 30% of children with Down syndrome. Left untreated, these same children often exhibit behavior problems as adults, limiting work and independent living opportunities. Many behavioral management tools are less effective for children with DS. This workshop will present the basic neuroscience of Down syndrome and how this informs effective behavior management, with practical strategies provided for use in the home and school settings from childhood through transition to adulthood.
Presenter Information:
Dr. David Stein is the founder of New England Neurodevelopment, LLC, a pediatric psychology practice in the greater Boston area of Massachusetts (www.NENeurodevelopment.com). He is a pediatric psychologist specializing in neurodevelopment. Dr. Stein speaks nationally and internationally about various topics in neurodevelopment, including ADHD, learning disorders, intellectual disability, and Down syndrome. Dr. Stein is a graduate of Tufts University and William James College. He completed his clinical training at Harvard Medical School and Boston Children’s Hospital, where he remained on the faculty for several years, through 2016. Dr. Stein is the author of the book Supporting Positive Behavior in Children and Teens with Down Syndrome: The Respond, but Don't React Method (Woodbine House, 2016).
3:00pm - Total Communication Supports Throughout the Lifespan
The ability to communicate is undeniably powerful, and yet many people with Down syndrome have communication challenges. This session brings together four experts in the field of communication to look at ways to support the communication of people with Down syndrome, whether through speech therapy, oral-placement therapy, sign language, AAC (augmentative and alternative communication), or a combination of approaches.
Presenter Information:
Heather Vukelich, MS, CCC-SLP is an ASHA certified Speech-Language Pathologist who specializes in working with people with Down syndrome and special needs in the areas of speech clarity, oral motor development and feeding development. Heather is a certified TalkTools Instructor and teaches webinars, seminars and parent feeding classes. Heather has worked at the Down Syndrome Connection of the Bay Area since 2008.
Jennifer Wayman has been a licensed speech-language pathologist for 27 years. For the past 15 years, she has specialized in working with children who are Deaf or hard of hearing. Jennifer works with toddlers, preschoolers, and kindergarten students who are Deaf or hard of hearing in Mt. Diablo Unified School District.
Ali Beckman is a speech-language pathologist and the owner of BEST (Beckman Early Speech Therapy). She is a certified vendor with the Regional Center of the East Bay (RCEB) and has seen hundreds of clients through RCEB, along with the private clients she sees through BEST. In 2022, Ali partnered with the DSCBA to launch a speech pilot program for our families with struggling communicators.
Kati Skulski, M.S. received her master’s degree in speech-language pathology from California State University, East Bay. Kati provides AAC and AT assessments and intervention to children in home, clinic, and school settings. Kati also works in the ACTS practice, is affiliated with the Down Syndrome Connection of the Bay Area, consults with Star Academy, volunteers internationally with The Nika Project, and has presented at state, national, and international conferences on resources for AAC strategies and tools.
