Many people experience some fear or anxiety when visiting the dentist. For people with intellectual or developmental disabilities (IDD), these feelings can be even more intense and complex, which often limits their access to adequate dental care.
This is exacerbated by gaps in the way the health care system provides dental services to people with disabilities, said Athanasios Zavras, a public health dentist at Tufts University School of Dentistry (TUSDM). The current focus is on treating disease, not preventing it.
“It is also critical to understand how the social determinants of oral health affect people with disabilities,” said Zavras, professor of public health and community services at UMass Delta Dentistry and chair of the department.
Tufts Dental Fellows (TDF), a network of seven clinics that provide care for people with intellectual disabilities and is operated by Tufts United Dental in partnership with the Massachusetts state government, is currently implementing a pilot program aimed at improving this situation.
TDF has been using a home-based care program, including telehealth and home visits, on a small scale since November 2023. The project is funded by a $175,000 grant from the CareQuest Oral Health Institute, a Boston-based nonprofit dedicated to promoting equity in dental care.
“Our goal is to improve the patient experience and increase access, especially for patients we don’t currently serve,” Zafras said.
For one family currently participating in the pilot program, that’s certainly the case. “For us, this is a big deal,” said a mother whose son is blind and nonverbal. “It’s take it or leave it.”
The program prioritizes patients, their families and caregivers and their needs—including some that are not dental in nature but impact a patient’s overall oral health.
Among other things, the grant funds a two-person dental hygienist/social worker team that will make office visits and connect with families and caregivers via teledentistry.
With support from TDF Clinical Director Darren Drag (D00, DG01, DG02), the duo—dental hygienist Katie Walker and social worker Niurka DeJesus—have provided care to 10 people with intellectual disabilities at home and through teledentistry.
They serve dental patients with a variety of disabilities, especially those with medical conditions that prevent regular dental visits or for which dental visits are unusually burdensome for them and their caregivers.
For someone with intellectual disabilities, a successful visit can sometimes be as simple as “having them open their mouth and we take a peek inside,” Zafras says.
“It’s successful because it provides a small opportunity for us to look into the patient’s mouth, assess their dental needs, and then work with the caregiver to develop a very specific, individualized plan based on the patient’s functional abilities.”
At an October meeting, caregivers in the pilot program described dental visits for their loved ones or others in the group homes they manage.
Many said they were highly anxious—sometimes exacerbated by long car trips to the dental office, or previous dental or medical trauma.
De Jesus, Walker, and participating caregivers spoke at the meeting, sharing stories praising the pilot program.
Caregivers noted Walker and De Jesus’ patience, creativity, and respect. De Jesus said families and caregivers are an important part of the multidisciplinary team that cares for their loved ones.
“Every strategy they gave seemed trivial to a dentist,” Walker said. For example, one parent told Walker that her son would pull someone’s hair when he was upset, while another parent gently told her when to end a dental checkup.
“But every little strategy the caregivers recommended made a significant difference. Offering someone an oral screening may seem trivial, but it’s a huge improvement for a lot of patients, and it’s all because of these very small strategies.”
In addition to improving and expanding TDF’s scope of care, “another goal is to train and standardize a group of dental specialists (all faculty members of the dental school) on how to treat patients with intellectual disabilities,” Zavras said.
“Two main goals were to see if we could make the TDF clinic more efficient by redesigning the patient intake process; and to have a team of experts who could support and advise our alumni and colleagues in private practice in caring for more patients with disabilities, thereby reducing medical issues,” he said.
The grant was used to create a new intake form modeled after a concept from the World Health Organization. The new form, called the Tufts Oral Health Functional Assessment, captures more than just dental issues and demographic information for each patient.
“We go deeper and try to assess the patient’s function,” Zafras explained. “How cooperative are they? How tolerant are they? How can we make the interaction successful? And, more importantly, how will dental care impact their function?”
De Jesus and Walker get to know the patient through detailed case information, often via telemedicine before an in-person visit. Walker and De Jesus are familiar faces at every visit.
They talk with patients, show them dental equipment, and even sing at least once. They also provide oral hygiene instruction to caregivers.
Additionally, Zavras says that because the visits are done in their homes, patients aren’t “in a weird, threatening institution, but in the sanctuary of their own home.”
In the process, Zavras learned that autistic people with high support needs rarely, if ever, visit TDF or other dental offices for care.
“They can’t stand going to the dentist, so their caregivers don’t try to take them to the dental office,” Zavras says. With home visits, people in these situations can get dental checkups with peace of mind.
In addition, DeJesus screens families to determine which ones need additional resources and whether parents and other caregivers need additional support. “Caregivers who are so absorbed in caring for their loved ones can often overlook their own needs,” Zavras says.
“Diagnosing and providing this level of caregiver support goes far beyond the care that dentists provide in the dental office.”
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