How Common Is Intellectual Disability Among Adults?

Emily Scott meets with her advisor, Courtney Lloyd, and professors Monica Lepore and Claire Verden before enrolling in a program for students with intellectual disabilities at West Chester University in Pennsylvania. (David Swanson/The Philadelphia Inquirer/TNS)

A new study is among the first to estimate the number of adults in the U.S. with intellectual disabilities, offering policymakers and other stakeholders a snapshot of the need for resources.

Just under 1% of adults between 21 and 41 have intellectual disabilities, according to recommendations recently published in the Journal of Intellectual Disability Research.

With no national survey measuring the prevalence of intellectual disability among adults, the researchers turned to data collected on children through the government’s National Health Interview Survey between 1980 and 1999.

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“Intellectual disability is diagnosed in childhood,” said Teal Benevides, an author of the study and an assistant professor at the Institute for Public and Preventive Health at Augusta University. “It is necessary to diagnose it in time. It’s not something that just happens in adulthood. Therefore, relying on estimates from child surveys is a good start.”

When researchers scaled up estimates based on the current U.S. population, they concluded that there were 818,564 people ages 20 to 40 living with intellectual disability in this country in 2021, or a prevalence of 0.95. %.

Importantly, many adults with intellectual disabilities are on waiting lists for community services and do not receive the support they need for housing, employment and much more, Benevides said. Additionally, they often face an uncertain future as caregivers age.

“What alarms me is that we don’t have enough services and supports for adults. “We just don’t have them,” Benevides said. “When people ask for services, supports and resources, there is nowhere to turn unless they are children.”

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