LISTEN: Researchers from Augusta University are using Census data to find out how many adults in the U.S. are currently living with intellectual and developmental disabilities. GPB’s Ellen Eldridge has more on a recent study.

A son hugs his father in a kitchen

n this photo made Saturday, April 1, 2017, Clay Heighten, right, gets a hug from his 19-year-old son Jon Heighten at their home in the Dallas area town of University Park, Texas. Jon Heighten's parents are helping lead a planned a 29-acre housing development and community for autistic adults that will break ground in the coming months.

Credit: (AP Photo/LM Otero)

Researchers with Augusta University now have a better idea of how many adults may be living with autism, Down Syndrome, or another intellectual disability (ID).

The reason to know is to help, Teal Benevides said.

"People with intellectual disability do not need to be dependent," Benevides said. "In other words, we don't have to have people who are perceived as burdens."

Benevides, an associate professor in the Department of Community and Behavioral Sciences at Augusta University, co-led a study that, in 2021, estimated 818,564 adults born in the 1980s and '90s had an intellectual disability.

Because no U.S. population-based surveys ask questions about intellectual or developmental disability in adulthood or in self-report surveys of adult health, researchers used multiple years of the National Health Interview Survey (NHIS) and Census data.

The study did not break down estimates by state, but Benevides said she would have expected geographic disparities.

"What we can say is, generally, people move to where there are resources or services if they have the opportunity," she said. "And so we would expect that the distribution of people with intellectual disability in a state would be unequal, mainly because there are unequal resources between Atlanta and some of our rural portions of the state."

Now, recognizing ID in early childhood provides a way to estimate the need for future services. This is important in making sure resources are available for when the child becomes an adult.

But many people with ID can live, work and participate in their communities with proper support and access to necessary resources.

While many resources exist for children with intellectual disability, Benevides said it's a mistake to let adults fall through the cracks. Individuals with intellectual disability live and work in our communities, and they want to work and live as independently as possible, Benevides said.

"Adults with intellectual disability that I partner with are very interested in working and having their own employment history," Benevides said. "One of the major barriers is that employers don't want to hire people with disabilities. Stigma and discrimination prevent people from achieving meaningful work, whether that's part time or full time."

Community participation may require services and supports as they age just like anyone else, she said, but without an accurate representation of those individuals, people and groups won't be able to provide adequate services and supports for their needs.

Benevides emphasized the importance of recognizing the strengths of people with intellectual disabilities.

"It's so important for all of us to be able to work with people who are different from ourselves, and who have unique talents, and gifts," she said. "That only makes us a stronger community."

A lot of people with ID are 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.

“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.