413 - An emergency and pandemic preparedness guide for individuals with disabilities and their families: Development and pilot-testing

Saturday, April 29, 2023

3:30 PM – 6:00 PM ET

Poster Number: 413
Publication Number: 413.207

Emily Hotez, University of California, Los Angeles David Geffen School of Medicine, Los Angeles, CA, United States; Kristine J. Chua, University of California, Los Angeles, Los Angeles, CA, United States; Denise M. Nunez, University of California Los Angeles, Los Angeles, CA, United States; Priyanka Fernandes, UCLA Mattel Childrens Hospital, Los Angeles, CA, United States; Elizabeth A. Lupercio, Los Angeles County Department of Public Health, Playa Vista, CA, United States; Cameron D. Lee, UCLA health, Brawley, CA, United States; Andrew M. Smith, University of California, Los Angeles, Los Angeles, CA, United States; Alice Kuo, University of California, Los Angeles David Geffen School of Medicine, Manhattan Beach, CA, United States

Presenting Author(s)

EH

Emily Hotez, Ph.D. (she/her/hers)

University of California, Los Angeles David Geffen School of Medicine
Los Angeles, California, United States

Background: During the COVID-19 pandemic, having an intellectual and/or developmental disability (I/DD)—including autism, ADHD, and other developmental conditions—emerged as one of the strongest predictors of contracting and dying from COVID-19 for individuals across the life course, even among children. In light of these findings, there is an urgent need to support this population during and post-pandemic. Funding from the American College of Preventive Medicine and the American Medical Association supported an interdisciplinary healthcare team at UCLA in developing potential solutions to address these disparities for the I/DD population.

Objective: The current study aimed to develop and pilot-test an emergency and pandemic-preparedness guide specifically designed for families of children with special healthcare needs, particularly the I/DD population.

Design/Methods: The development of the guide entailed an iterative collaboration between: 1) physicians, service providers, and staff within a clinic that adheres to the Leadership Education in Neurodevelopmental Disabilities (LEND) model; and 2) individuals with I/DD and their families within the LEND clinic. Pilot-testing entailed the administration of an online and mail-based survey assessing UC-LEND patient acceptability and utility of the guide.

Results: This process coalesced into a guide—translated in both English and Spanish—that focused on both emergency- and pandemic-specific preparedness strategies, with specific guidance, resources, and options for children with particular disabilities. Pilot study feedback from LEND patients (n = 81)—including patients with I/DD (n = 22); family members / close friends of individuals with I/DD (n = 60), and caregivers of individuals with I/DD (n = 55)—revealed that the majority of recipients reported that 1) the guide had high acceptability and utility; 2) they would use the guide; and 3) emergency preparedness is critical.

Conclusion(s):

Healthcare and service providers serving individuals with I/DD and other minoritized patient populations have an opportunity to address health disparities by disseminating relevant resources created by key I/DD stakeholders. Implications and recommendations for other healthcare clinics seeking to support patients with I/DD and their families are provided.