New study examines the number of adults who are living with intellectual disability

A new study conducted by faculty researchers at the Institute of Public and Preventive Health at Augusta University shows the prevalence of intellectual disability (ID) in adults.

The study estimates the number of adults living with ID is .95% or 9.5 per 1,000 adults between the ages of 21 and 41.

In the United States, there has been no comprehensive survey of adults, and it’s tough to estimate the number of adults living with ID. But looking at childhood survey data of those with ID, conclusions can be drawn on how many adults have intellectual disability.

The study was conducted by Teal Benevides, PhD, assistant professor in IPPH, Biplab Datta, PhD, assistant professor in IPPH and the Department of Health Management, Economics and Policy, Jennifer Jaremski, research associate in IPPH, and Michael McKee, PhD, associate professor at the University of Michigan.  

“Many adults with ID are going to require services and support. They’re likely going to require housing support, employment support and many of them are food insecure. I think policymakers at both the state and federal level need to know about this because, regardless of whether or not our policymakers support Medicaid expansion, many people with ID are also going to need adequate health care coverage because the vast majority of people with intellectual disability are not employed.”

Teal Benevides

“Intellectual disability is diagnosed in childhood,” said Benevides. “It needs to be diagnosed early. It’s not something that just happens in adulthood. So relying on the estimate that’s from childhood surveys is a good start. It’s just aging estimates up based off the current population of the U.S. So I do feel pretty confident that we can base future projections off in the absence of better epidemiological evaluations of prevalence.”

She added it’s important to realize a lot of people with ID are now out of high school and age out of educational services to support them at the age of 21. They may fall through the cracks during the transition to adulthood and may not be receiving the services they need.

“Many adults with ID are going to require services and support. They’re likely going to require housing support, employment support and many of them are food insecure,” Benevides said. “I think policymakers at both the state and federal level need to know about this because, regardless of whether or not our policymakers support Medicaid expansion, many people with ID are also going to need adequate health care coverage because the vast majority of people with intellectual disability are not employed.”

Not just that, many of those with ID are more likely to experience disparities in housing, employment, education, poverty and more.

In Georgia, Benevides said there is a waitlist of 7,000 people looking for Medicaid services for adults with intellectual and developmental disabilities, and there’s just not enough resources available to assist those with ID.

Another concern is that people with ID have the same life span and those who may provide care, such as parents or guardians, don’t know what will happen to their older children with ID when they aren’t around or are unable to assist them.

“What alarms me is we don’t have sufficient services and supports for adults. We just don’t have them,” she said. “When people ask for services, support and resources, there’s no place to point them to unless they are children.”