Meeting the Challenges of Special Needs Dentistry

When Elizabeth Page, who has cerebral palsy, was a little girl, she and her younger sister Kathy went to the same dentist. Their mother, Deb Valley, would carry both her daughters up the stairs to the second-floor practice and place Lizzie in the dental chair.

Then Elizabeth began using a wheelchair when she turned 12, and her dentist’s office didn’t have an elevator. Such physical obstacles are just one of many barriers people with intellectual and developmental disabilities encounter in seeking dental care.

Even more daunting than inaccessible offices are the social stigma, low insurance reimbursement rates and the lack of professionals trained to treat patients with disabilities. Perhaps a reflection of this population’s invisibility in the health-care landscape, few studies have been done about the oral health needs of the 10 million Americans with intellectual and developmental disabilities. Researchers do know that most of these individuals are at increased risk for poor oral health. And all too often, people with special needs can’t find a dentist to treat them.

“This is one of the most underserved populations in the nation,” says Mark Nehring, the Delta Dental of Massachusetts Professor and chair of public health and community service at Tufts School of Dental Medicine. “If there’s a group that doesn’t get routine, quality care, it’s this group.”

In Massachusetts, though, patients with special needs have an ally. Since 1976, the Tufts Dental Facilities (TDF) have cared for individuals with physical and intellectual disabilities, such as autism and Down syndrome. A network of TDF clinics across the state not only serves these patients, it trains Tufts dental students and residents to care for them. The hope is that the TDF clinics will create a pipeline of more dentists in more places who are prepared to treat patients with special needs.

The TDF model was born out of dark times in the history of the state caring for special needs residents. Massachusetts once led the nation with its publicly funded system of institutions—known as state schools—for people with intellectual disabilities. By the 1970s, though, allegations of abuse and neglect in the schools prompted a series of lawsuits.

One class action suit required the state to make dental care available to people with intellectual disabilities. To meet that mandate, Massachusetts partnered with Tufts School of Dental Medicine to treat patients with intellectual and developmental disabilities in clinics on the grounds of the state schools, most of which were subsequently closed.

Thirty-eight years later, though, Tufts continues to operate eight TDF clinics—some housed in brand-new locations, some on the campuses of the former state schools—that serve more than 8,000 patients.

“It’s a wonderful statement about the state’s priorities,” says U.S. Rep. Jim McGovern (D-Massachusetts) of Worcester. “But even if you put aside that human element, you could make the argument that you end up saving money. Dental care used to be considered a luxury. The good news is we are rethinking that based on the science.”

Indeed, it is well known that good oral health is conducive to overall well-being.

Valley still remembers the first time she brought her daughter to a Tufts Dental Facilities clinic after she learned about the service from another parent of a special-needs child. The first visit was a little more chaotic than their former dentist’s office, and Elizabeth was apprehensive.

The TDF staff “were really good with Lizzie—and she used to really fight us,” says Valley. “It was very different from going to the regular clinic where they aren’t used to dealing with handicapped people. Everyone was so helpful and kind. They made me feel like we belonged there.”

That was nearly 20 years ago, and Elizabeth, now 34, has seen a TDF dentist every six months like clockwork, her mother reports. Recently, she made her first visit to the new TDF clinic at the Seven Hills Family Services Center in Worcester.

“She has a mouth full of teeth because of this place,” Valley says.

Expecting the Unexpected

Jamil Abbasy, D06, DG07, turns in a circle, his arms spread wide in the operatory of the TDF clinic in West Springfield, where he is clinical director. Opened in June 2013, the West Springfield site is among the newest TDF clinics. Relocated from the Monson Developmental Center in Palmer, the new clinic is equipped with state-of-the-art technology, but its most important feature is the floor plan. To accommodate people who use wheelchairs, both the X-ray room and the main dental operatory are much wider than those spaces would be in a typical dentist’s office.

Office accessibility—while essential—isn’t the main reason people with disabilities have such a hard time finding dentists willing to take them on as patients. Plenty of people with intellectual or developmental disabilities are fully mobile. Sometimes, that too presents challenges. Carli Bennett, Abbasy’s dental assistant, recalls the time a patient bolted from the office and out into the parking lot. It’s emblematic of how TDF staff must learn to expect the unexpected every day.

“One visit, a patient might be perfectly cooperative,” Abbasy says. “The next visit, they aren’t having it at all. You just have to say, ‘OK, we’ll try another day.’ ”

That unpredictability may be one reason dentists are reluctant to take on patients with intellectual disabilities. In a typical dental practice, staff can’t assume a routine procedure with a disabled patient will be, well, routine, and that the operatory will be ready for the next patient.

Also, more than 90 percent of patients with disabilities have dental coverage through public insurance programs such as Medicaid, which reimburse dentists for their services at lower rates than other insurance plans. The numbers look even more anemic the longer the visits take.

“A lot of times these people will go without care, and a filling that’s not so bad gets deferred once, twice, and the next thing you know, it’s problematic,” Abbasy says.

Perhaps even more than the financial ramifications, many dentists just don’t know how to manage these patients’ behavioral issues. In the past, the only way most dental students—and hygiene and dental assistant students—learned about caring for special-needs patients was through intermittent contact in a clinical setting.

Pediatric dentists had been the go-to experts to call on for advice when intellectually disabled adults needed dental work, because their specialty used to include training in special-needs care. But the specialty dropped that requirement more than a decade ago.

About the same time, increasing numbers of dental students said they just weren’t prepared to treat special-needs patients, according to a 2005 article in the Journal of Dental Education (JDE). “The younger the dentists, the worse they evaluated their dental education concerning special-needs patients,” the authors wrote.

That’s especially problematic because surveys suggest—including Tufts research published in the JDE in August 2014—that the more experience dental students have treating individuals with disabilities, the more willing they are to care for them once they go into practice. That’s why Tufts’ third-year pediatric training includes a one-hour seminar and a two-hour clinical experience dedicated to treating children with special needs. It’s also why all fourth-year students go through a special care rotation, when they spend a week at a TDF clinic.

“It’s always a challenge trying something for the first time,” says Darren Drag, D00, DG01, DG02, clinic operations director for the TDF program. “I would equate it to anything new you do in dentistry, whether it’s a root canal, a crown, an implant or, in our case, treating a patient with special needs. We give our students and residents a place to start. That can be half the battle.”

Huw Thomas, dean of Tufts School of Dental Medicine and chair-elect of the American Dental Education Association, agrees. “The TDF experience for our students is critical. Being exposed to this patient population is very important,” he says.

Drag recalls being “quite intimidated” when he first landed at the Northwoods TDF in Taunton, Massachusetts, in 1999 for a five-week community service externship as a fourth-year student. “I’d never had experience with someone who was developmentally disabled before,” he says. “Hands down, it was the best five weeks of my years as a dental student at Tufts.”

Drag, who sees patients in the TDF clinic in Taunton as well as in the operating room, argues that the rotation is a crucial piece of being a well-rounded dentist. The TDF clinics, he notes, also treat patients who have suffered traumatic brain injuries in accidents or during military service.

“Someone who was just like you and me one day, and then the next day, everything changed forever,” he says. “We’re training our dental students to navigate these situations because it could happen in their private practice at any time, unfortunately. Being in a position not to shy away from this kind of encounter speaks volumes about you as an individual as well as the practice you work in.”

Karen Chang, DG99, clinic director at the TDF sites in Worcester and Groton, doesn’t expect every Tufts student to love the specialty or the mandatory special-needs rotation during the final year of dental school.

“But I tell them my hope is to prepare them for that one patient who walks into their practice so they don’t have to say, ‘I can’t treat you.’ They feel like they’ve encountered this before, and they can say, ‘I know what to do,’ or at the very least know where to refer,” she says.

Chang decided she wanted to dedicate her career to providing care to a minority group when she was a dental student at SUNY Buffalo. But it wasn’t until she sat through a lecture about special-needs dentistry that she knew where her calling would be.

That brought her to Tufts, for a general practice residency. Many dental schools’ postgraduate residency programs offer extra training with patients with disabilities, but few have clinics comparable to the TDF system as partners. Chang spent most of her residency at the TDF clinic once housed at the Walter E. Fernald Developmental Center in Waltham.

“I could not have chosen a more underserved group,” she says. “This is a population that doesn’t really have a voice. When you are called to do this, you become their voice.”

Patient Whisperers

The reason people with intellectual and developmental disabilities are prone to poor oral health is often heartbreakingly simple. Many of these patients are physically unable to brush their teeth, and many won’t allow someone else do it for them.

People with developmental disabilities have higher rates of cavities, gum disease and tooth loss, according to a study by researchers from Tufts schools of Medicine and Dental Medicine that was published in the October 2014 issue of The Journal of the American Dental Association. The 808 caregivers surveyed reported that more than any other factor, behavioral problems interfered with regular brushing and flossing.

Others are hampered by medical conditions, or by the side effects of medications they take, which is why regular dental checkups and cleanings are so important.

Preventive care brings one middle-aged man, who uses a wheelchair, to the Worcester clinic. Drag, hygienist Laura Dombroski and certified dental assistant Jane Fitzgibbons want to give him the best cleaning and preventive care they can.

The patient is not able to speak, and though he knows the dental team, he is a bit apprehensive as they deftly lift him from the wheelchair and place him in the dental chair, gently swaddling him in brightly colored cotton, called a rainbow wrap, to help him stay put. Drag, positioned at his feet, banters about the patient’s new Nikes. Fitzgibbons, a 34-year veteran of TDF clinics, knows the patient well. She reassures him. “You’re all right, sweetheart,” she coos repeatedly as Dombroski begins cleaning his teeth.

About halfway through, sensing that their patient has become tense, Drag suggests they take a break. Even so, the whole cleaning is finished in less than 20 minutes. They sweep the patient back into his wheelchair—no resistance this time—and the man, with his caretaker, is out the door.

“Most cleanings take more than 20 minutes,” says Drag. “In this case, it was dictated by the patient’s needs. Normally, we take as much time as the patient will give us.”

“That was what you call a success story. We got everything,” says Fitzgibbons, wiping down the chair with disinfectant. “We’re in and out because it’s less traumatic for the patient. The less stress for them, the better.”

If anyone knows how to soothe these patients, it’s the TDF staffers, many of whom, like Fitzgibbons, have worked in the clinics for decades. Co-workers call Lori Lonchiadis, who has worked with Chang for 15 years, “the patient whisperer.”

It’s not long before she lives up to the moniker. A 12-year-old girl with Down syndrome has come into the Worcester clinic, and though she knows the staff from their previous location, the move to the new building has unsettled her. Lonchiadis talks with her in the waiting room for a while, stroking the girl’s long brown hair. Soon, the pair head to the operatory together.

It’s just one small example of the emotional investment the TDF dentists, hygienists and assistants make in their patients. Donna Bernard, a dental assistant who works with Chang at the Groton and Worcester clinics, remembers when the entire staff met the mother of a patient at the hospital so they could help her get him out of the car and into the building.

“If that’s what we had to do to get him through it, that’s what we do,” she says. “It’s not just patient management; it’s family management.”

Why would anyone go to such lengths for a job? In talking to anyone affiliated with TDF, one refrain is constant—it’s rewarding work.

“It stands out when we get a patient totally fixed up,” says Abbasy. “When they’re not in pain anymore, their behavior changes. Then you know you have really helped that person. You made a difference in someone’s life.”

Jacqueline Mitchell can be reached at jacqueline.mitchell@tufts.edu.

The Tufts Dental Facilities (TDF) clinics are an important public health resource for researchers and policy experts interested in learning more about improving oral health care for patients with intellectual and developmental disabilities.

A team of Tufts researchers, led by John Morgan, an associate professor of public health and community service at Tufts School of Dental Medicine, and co-principal investigator Paula Minihan, an assistant professor of public health and community medicine at Tufts School of Medicine, published a landmark study in 2012 that mined the electronic patient records of nearly 5,000 adults who had been treated at TDF clinics between 2009 and 2010. Their findings were surprising: TDF patients, despite having regular access to affordable, high-quality dental care, had disproportionately high levels of dental disease. The research was published in The Journal of the American Dental Association (JADA).

This kind of information gives public health dentists a powerful tool to develop ways to improve care for disabled patients, Morgan says. The research can help inform “where we can have the most impact in terms of prevention.”

In a follow-up study, published in the October 2014 issue of JADA, the Tufts researchers surveyed more than 800 caregivers of adult patients who had visited one of the TDF clinics between 2010 and 2012. They looked at caregivers’ experiences helping their charges brush and floss, their level of comfort in assisting with these tasks and their ability to recognize decay and gum disease.

“We were surprised to find that while 71.6 percent of paid caregivers who participated in our study reported having received formal group training in oral health care, only 6.4 percent of family caregivers reported the same,” says senior author Aviva Must, N87, N92, professor and chair of public health and community medicine at Tufts School of Medicine.

Flossing posed a particular problem, occurring “infrequently” or “never” for more than 75 percent of the patients.

“Policymakers should consider establishing an organized system that provides caregivers, including family caregivers, with information and support,” Morgan says.—Jacqueline Mitchell