June DSES - Transitions
The Down Syndrome Education Series (DSES) is a monthly educational seminar for families of children with Down syndrome, designed to connect parents with information that will positively impact the education and well-being of their child.
In this presentation, Dr. Alyssa Siegel, Medical Director of the Children’s Hospital of Philadelphia’s Transition to Adulthood Comprehensive Care, will address the common challenges that families face during this exciting but daunting time. In conversation with Stephanie Pratico, family-centered care educator and advocate, and parent of two young adults with Down syndrome, this experienced team will delineate planning strategies and solutions that will allow families to fly rather than fall as they approach the transition to adulthood. A PTI representative will be available to help answer questions as well.
Dr. Alyssa Siegel is the Clinical Director of NJ Transition to Adult Coordinated Care at the Children’s Hospital of Philadelphia, a program designed to help families of patients with intellectual and developmental disabilities navigate the challenging transition from pediatric to adult care. Dr. Siegel has a special interest in working with families of individuals with Down syndrome and has been an invited speaker at regional, national and international conferences, including the National Down Syndrome Society (2020), National Down Syndrome Congress (2016, 2017, 2018), the Canadian Down Syndrome Society Conference (2016, 2017), and the World Down Syndrome Congress (2018). She has developed written and on-line resources, including the CHOP Trisomy 21 Toolkit for Transitioning to Adult Medical Care and the safety series, Keeping Your Special Needs Child Safe. Dr. Siegel is a member of the Down Syndrome Medical Interest Group, a Fellow of the American Academy of Pediatrics, and Clinical Assistant Professor of Pediatrics, Perelman School of Medicine at the University of Pennsylvania.
Stephanie A. Pratico is the mother of two young adults with Down syndrome and complex medical needs, John and Sara. In addition, she was co-guardian of her 70-year-old Aunt Cathy with autism. Lead by personal experience, she has been an advocate for over twenty years consistently working to improve healthcare, education and supports for individuals with developmental disabilities. She has advocated alongside many organizations including Special Olympics NJ, (Children’s Hospital of Philadelphia) CHOP and the Arc of New Jersey, locally and nationally on various education, healthcare, and community issues which has included testifying at various committee hearings.
She spearheaded and manages the new CHOP NJ Transition to Adult Comprehensive Care program (NJ TACC). This program was created specifically to support individuals with intellectual and developmental disabilities and their families in NJ with the complexities of transitioning vital medical, community and support services into adulthood.
She is the founder of Valuable Partners, LLC which is a consulting firm. In this role, she works to educate healthcare professionals, patients and families on the practice of patient and family-centered care partnerships to enhance care coordination and improve outcomes for complex patients. She is an experienced lecturer and educator within healthcare systems and medical schools including The Children's Hospital of Philadelphia, University of Pennsylvania School of Nursing and Doctoring, Arcadia University Genetic Counseling Program, Rutgers Robert Wood Johnson Medical School-The Boggs Center on Developmental Disabilities, Special Olympics New Jersey, and a Mercer County Community College Distinguished Lecturer.
In addition, she is a graduate fellow of the LEND (Leadership Education in Neurodevelopmental Disabilities) Program at CHOP, a member of the CHOP Family Advisory Council and CHOP Family Faculty. Additionally, she was a consultant to Special Olympics New Jersey and previously managed their Healthy Athletes program. Stephanie is a graduate and guest speaker of Partners in Policymaking under the NJ Council on Developmental Disabilities (NJCDD) and served as the Chairperson of the NJCDD from 2014 to 2017.
