Webinar 3: Partnering to Transform Healthcare with People with Intellectual and Developmental Disabilities
Thursday, March 15, 2018
Play recording (1 hr 1 min)
Handout: Tackling Health Disparities
Video: Daphne Ron: Good and Bad Experiences with Health Care
Presenters: Tamar Heller, PhD (theller@uic.edu) and Sarah Ailey, PhD, RN, CDDN, APHN-BC (Sarah_H_Ailey@rush.edu)
Abstract: Disparities in treatment of people with intellectual disability in health care leads to increased morbidity and mortality and costs, and decreased quality of life. Proactive work for practical, implementable solutions is needed, as well as consensus and action plans on best practices and research and policy agendas. The Partnering to Transform Healthcare with People with Disabilities Conference provided an opportunity for self-advocates across disability communities (intellectual, physical, sensory and mental) to partner with national experts (providers and policy makers, executives, insurers, regulators and others) to synthesize current innovations and improvement efforts in health care with people with disabilities, reach consensus on best practices, propose needed research and policies, and develop action plans. We will report findings from the conference regarding currently implementable solutions, consensus on best practices and research, and policy agenda recommendations for people with intellectual disability. We invite participants to join the dialogue.
Presenter bios:
Tamar Heller, PhD, Distinguished Professor, heads the Department of Disability and Human Development, University of Illinois at Chicago (UIC) and its University Center of Excellence in Developmental Disabilities. She also directs the Rehabilitation Research and Training Center (RRTC) on Developmental Disabilities and Health, and is Co-PI of the RRTC on Community Living Disability Policy and the Family Support RTC. Her research focuses on health and long-term services and supports for individuals with disabilities and their families. She was President of the Association of University Centers on Disabilities (AUCD) board, and co-founder of the Sibling Leadership Network. Her awards include the 2009 Arc of Illinois Autism Ally for Public Policy Award; the 2008 Lifetime Research Achievement Award, International Association for the Scientific Study of Intellectual Disabilities, Interest Group on Aging; the 2009 Community Support Services Community Partner Award, the 2010 College of Applied Health Sciences, UIC Outstanding Researcher Award, and the AUCD 2012 International Award.
Sarah Ailey, PhD, RN, CDDN, APHN-BC, is a nurse researcher and clinician who works to improve the health and health care of people with disabilities, concentrating on intellectual disabilities. Her research and scholarly practice are concentrated on translating research to community and inpatient hospital settings to improve the lives of individuals with intellectual disabilities. She is investigating the effect of the Steps to Effective Problem-solving (STEPS) program in group homes, funded by an R01 grant from the Eunice Kennedy Shriver Institute. Ailey has been a member of the Americans with Disabilities Act Task Force at Rush University Medical Center since 2003. She also co-chairs (with Robyn Hart) the Adults with Intellectual and Developmental Disabilities Committee at Rush since 2007; the collective work at Rush to improve patient care for this population has been described as the “gold standard” in The Hospitalist, a publication of the American College of Physicians.