New research is shining a light on a group particularly vulnerable to the new coronavirus: People with an intellectual or developmental disability (IDD), cared for either by family at home or in group homes.
People with these types of disabilities include those with Down syndrome, cerebral palsy and other conditions, and the data shows they're significantly more likely to die after contracting COVID-19 than the general public.
According to the database used in the study, the virus claimed the lives of just under 3% of COVID-19 patients between the ages of 18 and 74 who did not have an IDD. But among COVID-19 patients who do have an IDD, that figure rose by half, to 4.5%.
IDD patients under the age of 18 are also more likely to die from COVID-19 than their young non-IDD peers, the study found.
Group homes may be especially hazardous, said one expert unconnected to the new study.
"People with IDD living in residential settings experienced what I would qualify as the 'perfect storm' for COVID-19," said Michelle Ballan. She's associate dean of research in the school of social welfare at Stony Brook University in Stony Brook, N.Y.
"People with IDD frequently rely on hands-on assistance from other people with daily self-care tasks, making social distancing particularly challenging and further increasing risk of disease transmission," Ballan explained.
"Not only are people with IDD who do not live independently at risk," she added, "but their caregivers may also find themselves facing competing obligations: To stay home if they are feeling sick, and to help the individuals who rely on them for daily functioning."
Higher risk in young
The new study was led by Dr. Margaret Turk, a professor of physical medicine and rehabilitation at SUNY Upstate Medical University at Syracuse, N.Y. Her team tracked the experience of more than 30,000 COVID-19 patients, including just under 500 who were characterized as having an IDD.
All were diagnosed with COVID-19 at some point between Jan. 20 and May 14, 2020.
"People with IDD have functional limitations in a variety of areas, such as learning, communication and language, and behavior," Turk explained. Those disabilities are typically diagnosed in early childhood, she noted, and are usually lifelong. Some live at home with family and varying degrees of in-home care, she said, while others live in group homes specifically configured to care for such clients.
To see how IDD might impact COVID-19 outcomes, Turk's group sifted through data provided by 42 health care organizations.
About one-third of the roughly 500 IDD patients in the study had an intellectual disability, about 56% had a pervasive and specific developmental disorder, while 18% had cerebral palsy and 21% had a chromosomal abnormality (including 5% with Down syndrome).
As a whole, COVID-19 patients with IDD were more likely to have nutritional, endocrine and metabolic disorders (such as diabetes) and/or circulatory/heart disease, compared with the non-IDD group.
Age seemed to make a difference. Among people aged 75 and up, there was little disparity in terms of COVID-19 fatalities: About one-fifth of both IDD and non-IDD COVID-19 patients died as a result of the virus.
But compared to people of similar age in the general population, viral death rates were notably higher among IDD patients between the ages of 18 to 75, the study found, and much higher among IDD patients under 18.
In fact, while almost no non-IDD patients under the age of 18 died from COVID-19, among IDD patients the death rated amounted to 1.6 out of every 100 infections, the research team found.
But more data is needed, Turk stressed. Right now, she said, it's just not known if IDD people are more likely to get infected in the first place, and there's no data on how many people in this group are currently infected because "there is no U.S. surveillance that identifies people with disability."
Support for paid caregivers crucial
Ballan believes more oversight is needed, however, to protect this vulnerable population.
"COVID-19, as it ravages its way across the United States, has already been noted to have a disparate impact on socially disadvantaged or otherwise marginalized populations," she said, and "among these are people with IDD."
One reason, said Ballan, is that IDD patients often lack access to high-quality health care despite battling a host of additional concerns, such as diabetes, asthma, obesity, lung disorders and heart disease. It's these conditions that have long been tied to higher odds for severe and even fatal COVID-19.
Higher rates of disability means a greater need for paid caregivers, but that presents dangers in the coronavirus era, as well.
"In many states, [people with IDDs] continued to attend day programs in large numbers," Ballan noted, and "when states required people with IDD to abide by stay-at-home orders, direct-support professionals were not initially provided with proper personal protective equipment and may have worked in multiple group homes."
Ballan believes that "these incredible 'essential employees' earning minimum wage risked their health and their family's health to ensure the safety of clients." Many had little choice but to work regardless of their own health status, because they "may lack the sick days, leave policy, and cross-coverage that would enable them to take time off and mitigate the spread of COVID-19 in the event of exposure or illness," she added.
And while there's no data yet to confirm it, that raises the possibility that paid caregivers "may have also infected multiple individuals with IDD, by working at multiple locations and being unable to socially distance when they help clients to eat, bathe and dress," Ballan said.
Turk's team published their findings May 24 in the Disability and Health Journal.
There are more resources for IDD patients battling COVID-19 at The Arc.