7:30 – 8:00 am
Registration and Continental Breakfast
8:00 – 8:15 am
Improving Healthcare for People with Disabilities: Bringing Bioethics and Disability Studies into Dialogue
Lisa S. Parker, PhD
Dickie, McCamey & Chilcote Professor of Bioethics
Director, Center for Bioethics & Health Law
University of Pittsburgh
Abstract: People with disabilities face particular challenges in obtaining healthcare. Moreover, healthcare providers often feel less well-equipped to meet the needs of their patients with disabilities. At the same time, bioethicists and disability rights advocates—and the fields of bioethics and disability studies—have sometimes had an uneasy intellectual and political relationship. This brief introduction to the conference will mark those tensions and challenges while outlining the path forward the conference intends to forge.
8:15 – 9:15 am
Keynote Lecture
Justice for All? Bioethics in Medical Prognostication, Ableism, and the Disability Paradox
Amanda K. Booher, PhD
Bioethicist, Summa Health
Abstract: This talk will primarily consider the bioethical principle of justice in relation to disability and medical prognostication. It will explore the concepts of "disability paradox" and the bias of ableism, as well as how these affect both medical personnel and patients and families. Additionally, the talk will address steps we as members of the medical community might take to confront these biases in ourselves to help best support patients and families.
Presentation slides – Do not cite or quote without attribution.
9:15 – 9:30 am
Break
9:30 – 10:45 am
Ira R. Messer Lecture
Ethical, Legal, and Social Challenges for Neurodivergent Adults in our Communities: Shifting to a Supported Engagement Model
Nanette Elster, JD, MPH
Associate Professor, Neiswanger Institute for Bioethics
Loyola University Chicago Stritch School of Medicine
Kayhan Parsi, JD, PhD
Professor, Neiswanger Institute for Bioethics
Loyola University Chicago Stritch School of Medicine
Abstract: In our 2022 co-edited book, Transitioning to Adulthood with Autism: Ethical, Legal and Social Issues (Springer), we examined a number of salient issues related to autistic adolescents transitioning to adulthood. In our next co-edited volume, we plan to examine a number of new issues facing autistic adults, such as housing, self-care, advocacy, spirituality, oral health, and masking. This talk will preview a new model called “supported engagement” through which we will examine these topics.
Presentation slides – Do not cite or quote without attribution.
10:45 am – noon
Panel
Medical Decision Making on the Spectrum
David Kappel, MD
Deputy State Medical Director for Trauma
WV Office of Emergency Medical Services
Joann Migyanka, DEd
Professor Emeritus of Communication Disorders, Special Education, and Disability Services
Indiana University of Pennsylvania
Andrew Nelson, EdD
Senior Director Autism Response Team at Autism Speaks
Autism Community Consultants
Valerie Satkoske, PhD, MSW
VP of Mission Effectiveness, Spiritual Care, & Ethics / UPMC Mercy
VP of Ethics UPMC
Abstract: Adults on the autism spectrum are often assumed to lack the capacity to make medical decisions for themselves and others. In some cases, these assumptions are based upon the autism diagnosis/label alone. In others, it is based upon how the disorder manifests, especially when it affects communication and emotional response. During this presentation, we will share recommendations to improve communication between medical professionals and autistic adults when engaging in advance care planning and surrogate decision making conversations.
Presentation slides – Do not cite or quote without attribution.
Noon – 12:30 pm
Lunch (included)
12:30 – 1:30 pm
A Crosswalk of Common Ethical Challenges in Substance Use Disorder Treatment & Disability Ethics
Todd Harvey, MSN, RN, CARN
Programmatic Nurse Specialist, Addiction Medicine
UPMC Mercy
Abstract: In the treatment of patients living with substance use disorders (SUDs), clinicians often confront a variety of unique ethical issues for which they must account, within themselves and within the broader healthcare system. One significant factor, stigma, both for SUDs and disabilities, limits the overall beneficence of receiving treatment due to unaddressed clinician biases or gaps in knowledge. This presentation will discuss how stigma manifests in treatment settings while highlighting action individuals can take to improve the treatment of both SUD and patients with disabilities.
Presentation slides – Do not cite or quote without attribution.
1:30 – 1:45 pm
Break
1:45 – 2:45 pm
Plenary Lecture
Barriers to Effective Healthcare for Disabled People: Signs of Progress in Medicine and Law
Mary Crossley, JD
Interim Dean, Professor of Law, John A. Murray Faculty Scholar
University of Pittsburgh
Abstract: More than three decades after passage of the Americans with Disabilities Act (ADA), persons with disabilities continue to face substantial physical, attitudinal, and knowledge barriers to the receipt of effective healthcare. These barriers contribute to inequitable health disparities for disabled people. Currently, however, promising efforts to address these barriers are emerging in medical, public health, and legal fields.
Presentation slides – Do not cite or quote without attribution.
2:45 – 3:30 pm
Disability Related Accommodations in Healthcare
Chatón T. Turner, JD
Senior Associate Counsel and Vice President Risk Management/Disabilities Services
UPMC
Abstract: This presentation will discuss the requirements that healthcare facilities must satisfy in order to comply with applicable civil rights laws intended to ensure that people with disabilities enjoy equal access to their services. There will be practical examples from one of the leading integrated delivery and financing systems in the country.
Presentation slides – Do not cite or quote without attribution.
3:30 pm
Conference Adjournment