CONFERENCE SCHEDULE

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.

Following this presentation, participants should be able to:

• Articulate key topics in bioethics on which disability rights advocates and bioethicists have differed.
• Suggest approaches to resolving tensions between the two fields.
• Identify practices in clinical care that reflect these suggested approaches.

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. 

Following this presentation, participants should be able to:

• Explain the terms “disability paradox” and “ableism” and their relevance to the bioethical principle of justice.
• Articulate how the disability paradox and bias towards ableism can negatively impact patient autonomy.
• Consider what steps could be taken to diminish disability biases and misinformation, and how that might inform healthcare professionals’ relationships with and advice for patients.

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.

Following this presentation, participants should be able to:

• Understand the various models used to explain neurodiversity.
• Identify various ethical and legal challenges facing neurodiverse adults.
• Learn about a model of supported engagement for neurodiverse adults.

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 Violi 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.

Following this panel, participants should be able to:

• Describe common health care barriers encountered by autistic adults.
• Identify core approaches individuals with autism value in healthcare interactions.
• Articulate the nuances of the advanced care planning process and strategies to better support adults with autism when discussing advance directives for themselves and/or medical decision making for others.

Noon – 12:40 pm

Lunch

12:40 -  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.

Following this presentation, participants should be able to:

• Identify common ethical issues in the treatment of patients with Substance Use Disorder (SUD).
• Identify the role stigma plays in treatment of SUD and disabilities.
• Adapt 3 clinical behaviors or approaches to improve ethical treatment of patients with SUD.

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.

Following this presentation, participants should be able to:

• Describe physical, attitudinal, and knowledge barriers to effective health care for disabled people.
• Identify an example of progress toward barrier removal in the medical/public health realm.
• Identify an example of progress toward barrier removal in the legal realm.

2:45 – 3:30 pm

Disability Related Accommodations in Healthcare

Chatón T. Turner, Esq.

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.

Following this presentation, participants should be able to:

• Discuss the barriers faced by people with disabilities (including ineffective communication) in accessing effective health care that may or may not be associated with their disabilities.
• Learn how healthcare facilities can provide people with disabilities with equitable access to appropriate, accessible, and high-quality health care.
• Explain why training should be provided to all health care providers so that they are able to provide high-quality care to patients with disabilities.
• Identify ways that healthcare providers can maximize the quality of life of their patients with disabilities by preventing and treating health conditions.
• Discuss why providing persons with equal access to healthcare and complying with disability related laws is a prudent risk management measure.

3:30 pm

Conference Adjournment