A study of nearly 550 adults with intellectual and developmental disabilities receiving residential services in New York City found that age, larger residential settings, Down syndrome and chronic kidney disease were the most common risk factors for COVID-19 diagnosis, and heart disease was most associated with COVID-19 deaths.

The study, "Risk Factors Associated With COVID-19 Outcomes Among People With Intellectual and Developmental Disabilities Receiving Residential Services," was published June 8 by JAMA Network Open and provided the first evidence of the risk factors leading to COVID-19 diagnosis and death among people with IDD who receive residential services.

The study's findings suggest that the risk factors for COVID-19 diagnosis and mortality for people with IDD who receive residential services are similar to the general population. It also provided more evidence of increased risk for severe COVID-19 outcomes for people with Down syndrome.

The results from this study reinforce early findings from the U.K. of increased risk for people with Down syndrome during the pandemic. While it will take time for scientists to fully discern the reasons for this increased risk, it is imperative that people with Down syndrome, their families, care providers and medical providers are fully aware of this trend and take all necessary precautions during this time."

Scott Landes, Researcher

The researchers also found that, similar to the nursing home population, an increased number of residents with IDD living in a group home was associated with more severe COVID-19 outcomes.

"We are to a place in the U.S. where access to COVID-19 vaccines is universal," Landes said. "While this will help alleviate some of the spread of the virus, it is necessary to continue monitoring and testing, especially in congregate settings such as group homes.

"However, unlike nursing homes, group homes for people with IDD have not always been afforded the resources necessary to perform routine COVID-19 testing for residents and staff," Landes added. "This is unacceptable. The results from this study indicate that all U.S. states should ensure that group homes are provided the same level of protection as nursing homes or other congregate care settings."

The research team for the study includes Landes, an associate professor of sociology and a faculty associate for the Aging Studies Institute at Syracuse University's Maxwell School of Citizenship and Public Affairs; Dr. Margaret Turk, Distinguished Service Professor of Physical Medicine and Rehabilitation at SUNY Upstate Medical Center in Syracuse, N.Y.; Marco Damiani, Chief Executive Officer, AHRC New York City; Philip Proctor, Enterprise Technology Strategy, AHRC New York City; and Sarah Baier, Licensed Clinical Social Worker, AHRC New York City.

The researchers set out by asking which individual and residential characteristics were associated with COVID-19 outcomes for people with IDD who receive residential services. They tracked COVID-19 outcomes for 543 people with IDD who were receiving support services and residential services from AHRC New York City in the city's five boroughs from March 1 through Oct. 1, 2020.

The researchers found that, like the general population, people with IDD who were older and/or had pre-existing health conditions were more likely to be diagnosed with, and die from, COVID-19. Chronic kidney disease and COPD were associated with an increased risk of being diagnosed; heart disease and cancer were associated with increased risk of death.

The researchers say that all of these risk factors point to the long-term need for to provide sufficient funding for IDD services.

"If we want to ensure the best health and quality of life outcomes for people with IDD, it's imperative that states do not cut funding for IDD services," Landes said. "In fact, the pandemic has underscored the critical need to increase our commitment to IDD services, including guaranteeing public health prioritization for people with IDD, providing medical care staff training on how to provide quality care for people with IDD, and increasing the pay for care staff."