STONY BROOK, NY, MAY 20, 2020— Those with disabilities may not always be able to advocate for themselves in a medical setting. In New York State, these patients have a case fatality rate 2.2 times higher than the overall COVID-19 rate. During the Coronavirus pandemic, this problem has been compounded as visitors have been restricted and often cannot advocate for their loved one.
Michelle Ballan, PhD, Professor and Associate Dean of Research in the Stony Brook University School of Social Welfare and Professor of Family, Population and Preventive Medicine, created a “COVID Disability Form,” which she says was intended to “reduce healthcare barriers and to help individuals with intellectual and developmental disabilities (IDD) communicate their needs, whether the patient is verbal or non-verbal.”
As the initiative picked up steam, Ballan was able to collaborate with Dr. Andrew Wackett, Clinical Associate
Professor in the Department of Emergency Medicine in the Stony Brook University Renaissance School of Medicine (RSOM), who was among many to vet the form and ensure it would be able to be used by healthcare workers.
“As an emergency medicine physician and educator, I realize the importance of providing compassionate, appropriate and effective care to a range of patients and especially including those who are unable to easily communicate for themselves, such as patients with intellectual and developmental disabilities,” said Dr. Wackett, who is also Associate Dean of Student Affairs, Director of the Clinical Simulation Center for RSOM. “This is a skill that can and must be learned by those training to become physicians and especially in such stressful times as during a pandemic.”
This form, which has now been translated into Spanish and amended for all 50 states, is designed to be completed by an adult with IDD, his/her family or representatives to help medical staff understand their condition. The form contains several different options in which patients or caregivers can explain how the patient is able to best communicate, as well as space to address triggers, responses to triggers and other valuable information a healthcare worker may need to know about a patient with disabilities. The form has been disseminated by New York Care Coordination Organizations and hundreds of disability agencies nationwide.
The idea has been so well received, that Ballan was awarded a grant by Pfizer to develop a training program for healthcare providers on how to best evaluate and care for persons with IDD presenting with COVID symptoms. Dr. Wackett will also be featured in one of the webinars about the initiative.
Ballan has also received a 2020 grant from the American Academy of Developmental Medicine and Dentistry to make Stony Brook one of only 18 universities with dedicated content in the medical school curriculum focused on individuals with IDD for physicians-in-training. She is hopeful that this program will help to eliminate diagnostic overshadowing and improve treatment rates.
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