Alaska Disability & Aging Summit

Blazing New Trails: Aging Well in Alaska

The increased life expectancy of individuals with intellectual disabilities marks a positive shift in societal attitudes and advancements in healthcare. Historical mistreatment and unethical practices have given way to improved life expectancies. This is a huge development that has now increased the gap in care for individuals with IDD. This gap highlights the need for increased education, training, and research on how to care for aging adults with IDD. The Disability and Aging Summit is a way for people to come together and explore the factors that have contributed to the improved life expectancy of individuals with IDD and to identify the challenges that remain in caring for this population as they age.

Two-Day Summit Sessions

• Normal vs not normal aging
• Palliative care for people with disabilities
• AARP fraud awareness
• Action panel involving state commissioners, legislators, and congressional delegation staff
• Emergency preparedness

Keynote Speaker: Dr. Jonathan Santoro

Dr. Jonathan Santoro is a nationally recognized pediatric neurologist and Director of Neuroimmunology at Children’s Hospital Los Angeles. He is also an Assistant Professor of Neurology and Pediatrics at the Keck School of Medicine of USC. Dr. Santoro’s work focuses on neuroinflammatory and neurodevelopmental disorders in children, with a special emphasis on advancing care for underserved and medically complex populations, including individuals with intellectual and developmental disabilities (IDD). A dynamic clinician and researcher, Dr. Santoro has helped identify and treat a rare and underdiagnosed condition now known as Down Syndrome Regression Disorder (DSRD). His pioneering work in this area has been life-changing for many families across the country, including one of our own.

Darci Owens, a long-time member of the Alaska disability community, experienced an abrupt and profound decline in her cognitive and physical abilities. After months without answers, Darci and her family found Dr. Santoro, who not only diagnosed her with DSRD but also provided a treatment plan that helped her regain her independence, personality, and joy. Her recovery has brought hope to families navigating aging and complex health conditions in individuals with Down syndrome and other developmental disabilities.

Dr. Santoro’s keynote will explore the intersection of neurology, aging, and intellectual disabilities, and share what providers, caregivers, and advocates need to know to better recognize emerging health issues in aging adults with IDD. His message is both clinical and deeply human. A reminder of the power of listening, research, and equitable care.

Coalition

• Emily Vandergon, Special Olympics Alaska – Inclusive Health Manager
• Michele Girault, Hope Community Resources – CEO
• Ian Casey, The Arc of Anchorage – CEO
• Riki Chapman, AK Training Cooperative Center for Human DevelopmentAging & Dementia/Long Term Care Disabilities Training Coordinator
• Lisa Cauble, AK Training Coopertaive Center for Human DevelopmentTraining / CHD Director
• Stephanie Wheeler, State of Alaska – Long Term Care Ombudsman
• Lanny Mommsen, State of Alaska Council on Disabilities & Special EducationResearch Analyst III
• Richard Saville, State of Alaska Council on Disabilities & Special EducationProgram Coordinator 2
• Brenda Overcast, AK Training Cooperative Center for Human DevelopmentCHD Information Systems Coordinator
• Yasmin Radbod, Alaska Commission on Aging – Rural Outreach Coordinator

Register for the SummitView Special Olympics website

For more information, contact Emily Vandergon, Inclusive Health Manager, at 907-222-7625 ext. 612 or [email protected].