Saving the Teeth of Patients With Special Needs

Cheryl Closs, a mother of four from West Islip, N.Y., wanted to save her daughter Bella’s two front teeth. They were badly decayed, and one dentist wanted to just pull them out. But Ms. Closs was having none of it.

Bella, who is 15 and in 8th grade, has special needs and uses a wheelchair.

“They are quick to pull a child’s teeth that is special needs,” Ms. Closs said. So she began a search for a root-canal specialist. She would take Bella out of school for the day and her husband would drive them to whichever borough for a dental appointment. But they took Bella to at least eight dentists and root-canal specialists, all of whom declined to treat her. Some “didn’t even look at her teeth,” Ms. Closs said. “This has happened so many times.”

Bella favors pigtails and Wonder Woman T-shirts. She smiles a lot but doesn’t say much and doesn’t like being touched, let alone restrained. She has a genetic disease called fucosidosis, which is deteriorating her brain function. Getting an X-ray or having her teeth cleaned can be challenging, requiring more time or more hands on deck to hold her head or flailing arms.

And many dentists can’t — or won’t — treat patients with disabilities. Some cannot physically accommodate a large wheelchair, “or they don’t feel comfortable treating the patients,” said Dr. Rita Bilello, the dental director at Metro Community Health Centers in Brooklyn, Staten Island and the Bronx.

Historically, pediatric dentists were taught how to treat patients with special needs, but general dentists weren’t. That means a child with autism might get regular checkups, but not necessarily an adult.

However, in 2006, a new standard for dental programs went into effect. The Commission on Dental Accreditation mandated all students had to be able to competently assess the treatment needs of special-needs patients. But as of 2012, less than three-quarters of dental schools have predoctoral students actively involved in their treatment, according to a study in the Journal of Dental Education.

Access remains a formidable problem for patients with special needs. But the N.Y.U. College of Dentistry’s Oral Health Center for People With Disabilities offers a new option for patients like Bella. It is the rare facility that treats adult and pediatric patients across the spectrum of disabilities — those with developmental delays like autism, intellectual disabilities, or diseases like cerebral palsy and dementia. It has two operating rooms where patients who can’t sit still can be sedated.

Besides expanding access for patients, N.Y.U.’s center aims to send all of its graduates into the world with the skills and confidence to care for special-needs patients.

Dr. Ronald Kosinski, a pediatric dentist and the director of the new center, didn’t mince words. Patients with disabilities face roadblocks because “people are afraid of them,” he said. “They are not looked at like people. We need to train dental students to stop throwing their hands up and to start embracing them.”

N.Y.U. educates roughly 10 percent of the nation’s dentists, so the new center could have an outsize impact. “You may not realize you’re capable of treating a schizophrenic in a wheelchair with cerebral palsy until you’re given an opportunity to try,” Dr. Bilello said.

There’s no shortage of need. Roughly 915,000 people are living with a disability in New York City alone, according to the Mayor’s Office for People With Disabilities. That’s potentially a lot of untreated teeth.

“Access to care is a huge, huge problem,” said Dr. Alan N. Queen, the attending-in-charge of a special-needs dental clinic at NewYork-Presbyterian Queens Medical Center. “The problem is that special-needs patients, they are difficult to treat compared to your average patient, and unfortunately there’s no allowance for that in how insurance pays.”

Dr. Queen, who is also in private practice in Flushing, Queens, said that to treat a Parkinson’s patient with tremors, for example, he needs one assistant to “hold their head still, another to retract their tongue, another assistant suctioning, and then me doing all the dental work.” Dental practices should get additional reimbursement for such cases, he said.

Last October, the American Dental Association updated its code of ethics to specify that patients with disabilities should not be denied dental service. At the very least, the code said, dentists who can’t treat a patient must refer them to another professional.

Ultimately, that’s how Bella caught a break. This spring, when an employee of a dental office called to cancel an appointment the day before because of Bella’s wheelchair, Ms. Closs started sobbing: “You made me wait six months.” An office manager got on the phone and found a solution.

Within a few days, Bella was wheeled into N.Y.U., ending her odyssey.

Many disabled New Yorkers refrain from seeing dentists at all, since many offices are not wheelchair-accessible, a violation of the Americans with Disabilities Act. “The purpose of the law is to make sure that people with disabilities have the same rights and opportunities as everyone else,” said Jonathan Novick, the outreach manager at the Mayor’s Office for People with Disabilities. “Therefore, they have the same right to dental hygiene that everyone else does.”

Even if they can get into a dental office, patients in wheelchairs face an additional hurdle: Assistants often have to help move them to a dental chair, or cumbersome hoists may be used. “For a patient confined to a wheelchair, it’s a source of anxiety to move from their wheelchair to a dental chair,” said Dr. Charles Bertolami, the dean of the N.Y.U. College of Dentistry.

N.Y.U.’s new center makes things much easier. At a recent visit, Bella had her wheelchair locked into place in a special wheelchair recliner and then tilted back to have her teeth inspected. It’s just one of 24 such recliners in the United States, according to John Walters, a designer at Design Specific, the company that makes it. In the center’s first month, about half of patients have used it, Dr. Robert Glickman, an oral surgeon, said.

In mid-April, N.Y.U. dentists determined that Bella could have root canal therapy to repair her two front teeth. A week later, Bella’s smile was fixed.

“The way they made her feel was a big deal for us,” Ms. Closs said. Joe Dockery, Bella’s father, added: “They treat her like one of their own kids.”

Bella showed her appreciation in her own way: After her first visit, she hugged her dentist.