Session: Centering the Perspectives Of Marginalized Patient Groups
A Unique Time in Neurology’s History: Recognizing Intellectual and Developmental Disorders as Health Disparities
Thursday, September 19, 2024
3:00 PM – 4:00 PM CT
Location: Grand Ballroom A (First Floor)
Abstract: In 2023, two major publications from distinct institutes at the National Institutes of Health formally designated people with disabilities as a population experiencing health disparities, marking a landmark year for the recognition of those with neurodisability: intellectual and developmental disabilities (IDD). Evidence from NINDS and NACMHD supporting the recent declarations recognizes a greater burden of disease experienced by individuals with disabilities and expands on distinct health disparities experienced by patients with neurological conditions. Historically, clinical barriers for this population range from the structural level to deeply rooted biases. While it is broadly recognized that the spectrum of disability includes impairments in the central nervous system, greater attention to the experience of neurology patients warrants recognition of subsets of patients who may be especially underserved. Specifically, in addition to the characteristics stemming from an individual’s disability qua dis- ability, evidence from across health systems suggests that the experience of health disparities by individuals with IDD is compounded by additional barriers related to communication, access to care, and exclusion from clinical trials. We argue that the field of neurology’s recognition and leadership in these areas not only helps to reduce health disparities but creates the opportunity for more epistemically just neurological care. We reviewed the literature including evidence used to support recent positions by the NIH and use ethical and conceptual analyses to develop a framework that stratifies interventions and identifies unique ways neurologists and other specialists can inclusively address disparities in their care for patients with disabilities, and neurodisability in particular.
Learning Objectives:
After participating in this conference, attendees should be able to:
Identify distinct health disparities experienced by people with neurodisability and discuss how these may compound.
Discuss the impact of prioritizing neurodisability care on patients across the health system.
Give concrete examples of how this recognition could lead to more inclusive and epistemically just care.
Benjamin Schindel, MD – Kennedy Krieger Institute, JHMI; Seth Keller, MD – Neurologist, Virtua Health; Jessica Sanders, MD – Assistant Professor, Neurodevelopmental Disabilities, University of Colorado School of Medicine; Miya Asato, MD – Vice President of Training, Neurodevelopmental Disabilities, Kennedy Krieger Institute, JHMI
