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Dentistry With a Difference

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Like lots of folks, Saretta Jones didn’t look forward to going to the dentist. She has hearing problems and learning differences, and there never seemed to be enough time for the dentist to make sure she knew how to care for her teeth when she went home.

Now, at 29, the Newark woman has learned how to brush properly. She flosses. And she uses a dental rinse to treat the gum disease she developed over the years. “My dentist takes the time to show me the right way to brush,” she says. “He cleans my teeth and shows me how to floss.”

Working with special-needs patients requires extra time, says Dr. Andrew Swiatowicz, who treats Jones and other people with conditions ranging from
autism to strokes. “Some patients can’t open their mouths. Some are too anxious,” he says. “We get patients where every tooth has something going on.” Lack of preventive care is especially prevalent among special-needs patients. In Delaware, 40 percent of people with disabilities do not get routine dental exams, according to a 2010 survey of the National Association of State Directors of Developmental Disabilities Services.

Older Delawareans with disabilities are more than twice as likely to lose all their teeth than their contemporaries who do not have disabilities. That is particularly dangerous because people who have developmental problems are far more likely to choke on a tooth after it falls out. And when a tooth is lost, it is usually gone for good. “Many people with special needs aren’t able to tolerate dentures or bridges,” says Swiatowicz, whose office is in Wilmington. “Losing their teeth impacts the quality of life. It isn’t just eating food. It’s enjoying food.”

He recalls working with a young woman with cerebral palsy, a disorder that impacts movement and muscle coordination. “She wanted to sit without moving, but she just couldn’t,” he says. “It got me to thinking how many dentists won’t or can’t take the time to treat this patient?” The dentist worked with the patient’s mother, who was able to comfort the young woman and keep her head still long enough to get a cavity filled. “On another patient, a filling would take five minutes,” Swiatowicz says. “On this patient, it took an hour.”

Younger special-needs patients are covered by Medicare, the government health insurance program for people who are poor or disabled. But that
coverage ends at age 21 in Delaware, one of only three states that does not provide dental coverage for adult Medicare patients. In 2013, the state created a program within the Division of Developmental Disability Services (DDDS) to fill the gap and provide benefits for adult special-needs patients.

“Clearly, dental services are important for good health,” says Jane J. Gallivan, DDDS director. Indeed. An abscessed tooth can spread infection throughout the body. Periodontal disease has been linked to diabetes, heart disease and dementia. Currently, the state contracts with 13 dentists in all three counties to provide basic services for adults with special needs, including a dentist at Stockley, a state-operated center in Georgetown for people with developmental disabilities. “The contracts cover cleaning and restoration, such as filling cavities,” Gallivan says. “We do not have the funds for braces, crowns, that sort of thing.”

Many patients reside in group homes, as does Jones, whose case manager arranges for a van to take her to dental appointments. Others live at home
with relatives. Two of Susan Caras’s three children have autism, each with different needs. Nicholas, 21, “is a bit of a handful,” his mother says. His 17-year-old sister Kendall does not speak.

Caras, of Hockessin, took her kids to Dr. Rosemary Clay, a pediatric dentist in Wilmington who has experience with children with attention deficit disorder, Down syndrome, autism and other conditions. “She is a wonderful dentist, very caring and capable,” Caras says. When Nicholas needed a root canal, they turned to Swiatowicz, who has privileges at a surgicenter, where patients can be sedated if needed. “Nicholas was in terrible pain and needed help quickly, and it was very hard to find someone to do a root canal for a special-needs patient,” his mother recalls.

A number of clinics offer care for patients with disabilities, but there are often waiting lists. Christiana Care’s dentistry program provides training for residents in caring for patients who need extra help. Westside Family Healthcare in Dover offers dental care for special-needs patients who also are affiliated with a primary-care provider at the center. La Red Health Center in Georgetown works with patients with Down syndrome, autism and other conditions, but is not accepting new patients until June.

Practice Without Pressure in Newark was founded by a concerned parent in 2002. Deborah A. Jastrebski’s son Marc has Down syndrome and developed a fear of doctors and dentists after years of being restrained or sedated for tests and treatments. PWP’s goal was to treat patients with-
out restraints and minimal sedation. The nonprofit group, now known as PWP Corporate, stopped providing dental care for patients at the end of 2014. In a letter to supporters, Jastrebski said the group will focus on education, advocacy and training for professionals who care for special-needs patients, including dentists who want to offer the PWP model in their offices.

In addition to behavioral issues, patients with special needs often have accompanying medical conditions. People with Down syndrome are prone to congenital heart problems. Patients who have autism are at greater risk for tooth decay because their medications cause dry mouth.

When Caras takes her kids to the dentist, she stays in the room with them. “He gives them breaks if they need breaks,” she says. “They need a dentist with extra patience.” On one occasion, getting a large cavity filled was too much for Nicholas. He decided he had spent too much time in the chair and got up. The solution was to make an appointment to fill the tooth and other cavities with Nicholas under anesthesia. The dentist also cleaned his teeth and took X-rays. “They accomplished a tremendous amount of work in one session,” Caras says. “When you have a child with special needs, a trip to the dentist is never routine.”
 

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