Individuals 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 of Family, Population and Preventive Medicine in the Stony Brook University School of Social Welfare, created a COVID Disability Form, which she says was a “labor of love,” to help all 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, a clinical associate professor in the Department of Emergency Medicine in the Renaissance School of Medicine (RSOM) at Stony Brook University, 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 and 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 12 languages, is designed to be completed by an IDD patient’s family or representatives to help medical staff evaluate the patient’s condition. The form contains several different options in which patients or caregivers can explain how the patient is able to best communicate, whether they have certain triggers and 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 shift diagnostic overshadowing and improve treatment rates and will be further used in the medical field after the pandemic has eased.
This form would be most helpful for my Teenage son recently hospitalized for four days. He is Non verbal on the low functioning Autistm Spectrum living at Ferncliff Manor residence in Yonkers. I am forwarding this form for there ER visits.