September 15, 2021—BRONX, NY—Patients with intellectual and developmental disabilities (IDD) are three times more likely to die from COVID-19 than the general population. Their heightened risk is due to a variety of causes: pre-existing health conditions, such as respiratory problems or obesity; increased likelihood of living in group homes, taking shared transportation, and being exposed to people outside their households; and struggles with safety precautions like mask-wearing or social distancing.
Now, faculty at Albert Einstein College of Medicine and clinicians at the Rose F. Kennedy Children’s Evaluation and Rehabilitation Center (CERC) at the Children’s Hospital at Montefiore have received three state and federal grants to address this health disparity by promoting COVID-19 vaccination among people with IDD, their families, and caretakers in New York State. The Einstein-Montefiore team is creating tailored messages and content for this community—including a series of videos, town halls, and social media posts—to counter vaccine misinformation and encourage vaccination.
“People with IDDs are among the hardest hit by the pandemic—both physically and emotionally,” said Karen Bonuck, Ph.D., co-lead on the three grants and professor of family and social medicine, of pediatrics, and of obstetrics & gynecology and women’s health at Einstein. “It is critical that we protect those most vulnerable in our society and the best tool we have right now against COVID-19 is vaccination.” Dr. Bonuck’s partner on the grants is Joanne Siegel, M.S.W., principal associate of pediatrics; the two co-direct Einstein’s Rose F. Kennedy University Center for Excellence in Developmental Disabilities (RFK UCEDD).
The Einstein-Montefiore team was awarded $180,000 from the New York State Developmental Disabilities Planning Council (DDPC) to lead the VaxFactsDDNY Initiative, which provides science-based information on COVID-19 to New York’s IDD community through several nonprofit and clinical partners. The researchers were also awarded two grants from the U.S. Centers for Disease Control and Prevention (CDC) totaling $94,000. They will leverage the grants to create materials targeted to families and individuals with IDD as well as IDD professionals across the Bronx, New York State, and the country.
“With the DDPC funding, we have already produced eight videos and will continue to roll out several more through the fall,” said Ms. Siegel. Each video features an individual explaining why he or she chose to be vaccinated. Speakers include Special Olympics athletes and coaches, people with IDDs who advocate for themselves and their peers, and parents of those with IDD.
In addition, the VaxFacts team has launched social media accounts on three platforms—Facebook, Twitter, and LinkedIn—to share relevant news and original content. They have also established a resource bank for professionals in the IDD field to access a curated list of articles, tools, and research related to COVID-19 efficacy, safety, and methods aimed at increasing vaccine confidence and acceptance.
The CDC grants will help Einstein and Montefiore experts extend the reach of the VaxFacts campaign. The first grant supports the team’s participation in a national consortium of UCEDDs to promote vaccine uptake. The second will support physician-led town halls, hosted by Vincent Siasoco, M.D., as well as planning and hosting IDD-friendly vaccination clinics, which provide accommodations for people with IDDs, including quiet environments, familiar providers, and extra time to administer shots.
Earlier this month, the team produced a Facebook Live event in collaboration with the Consulate General of Mexico in New York and the New York State Office for New Americans. Planned events include a statewide virtual conference hosted by VaxFactsDDNY and the Interagency Council of New York, which will address the latest scientific information on COVID-19, vaccine education, and mental health concerns of families and individuals with IDD.
To ensure the content reaches as many New Yorkers as possible, the videos and town halls are translated into Spanish, Mandarin, Korean, and Bengali.
Prior to developing the videos, the Einstein and Montefiore researchers used DDPC funding to conduct a study on vaccination views in the IDD community. In January 2021, the team surveyed 825 people with IDDs, caregivers who support them, and CERC staff who work with them. As reported in their paper published this summer in Disability and Health Journal, nearly 75% of respondents got or planned to get the COVID-19 vaccine, with rates highest in older individuals. Vaccine preferences at the time matched the general population, as did reasons for hesitancy, including concerns that vaccines were developed too quickly and had side effects. Researchers used this data to shape the VaxFacts initiative.
“Together with our partners, our targeted outreach and promotion efforts will combat misinformation, allay fears, and share science-based facts to ensure our IDD community members and their families are confident and have access to life-saving vaccines,” said Dr. Bonuck.
About Albert Einstein College of Medicine
Albert Einstein College of Medicine is one of the nation’s premier centers for research, medical education and clinical investigation. During the 2020-21 academic year, Einstein is home to 721 M.D. students, 178 Ph.D. students, 109 students in the combined M.D./Ph.D. program, and 265 postdoctoral research fellows. The College of Medicine has more than 1,900 full-time faculty members located on the main campus and at its clinical affiliates. In 2020, Einstein received more than $197 million in awards from the National Institutes of Health (NIH). This includes the funding of major research centers at Einstein in aging, intellectual development disorders, diabetes, cancer, clinical and translational research, liver disease, and AIDS. Other areas where the College of Medicine is concentrating its efforts include developmental brain research, neuroscience, cardiac disease, and initiatives to reduce and eliminate ethnic and racial health disparities. Its partnership with Montefiore, the University Hospital and academic medical center for Einstein, advances clinical and translational research to accelerate the pace at which new discoveries become the treatments and therapies that benefit patients. Einstein runs one of the largest residency and fellowship training programs in the medical and dental professions in the United States through Montefiore and an affiliation network involving hospitals and medical centers in the Bronx, Brooklyn and on Long Island. For more information, please visit einsteinmed.org, read our blog, follow us on Twitter, like us on Facebook, and view us on YouTube.
About Montefiore Health System
Montefiore Health System is one of New York’s premier academic health systems and is a recognized leader in providing exceptional quality and personalized, accountable care to approximately three million people in communities across the Bronx, Westchester and the Hudson Valley. It is comprised of 11 hospitals, including the Children’s Hospital at Montefiore, Burke Rehabilitation Hospital and more than 200 outpatient ambulatory care sites. The advanced clinical and translational research at its medical school, Albert Einstein College of Medicine, directly informs patient care and improves outcomes. From the Montefiore-Einstein Centers of Excellence in cancer, cardiology and vascular care, pediatrics, and transplantation, to its preeminent school-based health program, Montefiore is a fully integrated healthcare delivery system providing coordinated, comprehensive care to patients and their families. For more information please visit www.montefiore.org. Follow us on Twitter and view us on Facebook and YouTube.
About RFK IDDRC
The Rose F. Kennedy Center at Einstein and Montefiore includes the RFK UCEDD and CERC. Annually, CERC serves about 5,000 patients with IDD and provides medical, psychiatric, and dental services, along with social services and speech language, occupational, and physical therapies. Most of its patients are children, but the center also serves people older than age 18 with IDD who have transitioned from pediatric care. They receive services in its Harold Diner Special Needs Dentistry program, Adult Literacy program, and a new primary care program.