Public Health Grand Rounds: Oral Health and People with Intellectual Disabilities

The Special Smiles station at the Special Olympics is a happy, welcoming place. Drawn in by the stuffed animals and the over-sized toothbrushes, athletes who may previously have been too scared to set foot in a dentist’s office are soon willing to let a medical professional give them a quick oral screening.

Lisa DeLucia, D.D.S.

Lisa DeLucia, D.D.S.

But for myriad reasons, people with intellectual disabilities experience health problems at a significantly higher rate than the general population, and access to health care can be especially challenging in more specialized fields, such as oral health.

“About 7 percent of the athletes we see need urgent dental care,’” said Lisa M. DeLucia, D.D.S., who has volunteered with the Special Olympics since 2004. “Unfortunately, the people we send home very often don’t have anywhere to go.”

So for the past decade, DeLucia and others have been working to expand access to oral health services to people with intellectual disabilities. DeLucia, a pediatric dentist at Eastman Institute for Oral Health, and Onolee Stephan, M.P.H., director of community health programs for the Special Olympics, shared these efforts at a recent Public Health Grand Rounds. The presentation was part of the “Summer in the City” series from the Center for Community Health.

Onolee Stephan, M.P.H.

Onolee Stephan, M.P.H.


For people with intellectual disabilities, several barriers exist that serve to stymie access to oral health.

“Most of our athletes have Medicaid, and Medicaid brings a lot of challenge with reimbursements for dental providers,” said Stephan. “People with disabilities also sometimes require longer appointment times, and as a result, a lot of our athletes can’t find dental providers in their local communities.”

While this can be a problem even in larger cities such as Rochester, it’s especially pronounced in more rural areas. There are only 38 dentists in Livingston County and only 13 in Orleans County.

“As you can imagine, with only a few dentists, the number that accept Medicaid shrinks significantly,” said DeLucia.

In the hopes of providing support to more dentists, DeLucia surveyed local providers, asking what would compel them to increase the number of patients with disabilities in their practice. Somewhat surprisingly, reimbursements weren’t the main issue.

“It was a concern, but the primary thing these providers needed was someone to discuss cases with, and continuing education courses,” said DeLucia.

Taking action

So in 2012, URMC, the Eastman Institute for Oral Health, and the Special Olympics came together to form a local chapter of the American Academy of Developmental Medicine and Dentistry. The chapter now consists of medical and dental students, residents, and fellows, and recently received a $50,000 grant from the Special Hope Foundation to create a training program that connects Special Olympians to dental resources.

In addition to providing dental education to local students, the group helps to spread awareness about the pejorative term “retarded,” asking community members to use “intellectual disability” instead. The group has also worked to help establish person-first terminology, encouraging the use of “person with intellectual disability,” rather than “intellectually-disabled person.”

And earlier this year, they held one of their largest clinical events to date, wherein 30 residents, faculty, and staff provided high-end dental work for 16 Special Olympians and people with intellectual disabilities. In June, DeLucia received the Dr. David Satcher Community Health Improvement Award for her efforts.

But despite the advances locally, the group knows that much work is still needed, both in the Rochester area and elsewhere.

“People with intellectual disabilities remain the most marginalized and discriminated against population in the world,” said Stephan. “It transcends national, cultural, and socioeconomic boundaries.”

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