Dental task force aims to improve care for special-needs patients

A task force is sharing critical information, problem-solving and developing creative methods of add
A staffer from the Office of Mental Retardation and Developmental Disabilities, left, instructs a person with a disability on proper dental care.
A staffer from the Office of Mental Retardation and Developmental Disabilities, left, instructs a person with a disability on proper dental care.

Going to the dentist can be scary under the best of circumstances. Imagine what it must be like for people with physical or developmental disabilities.

Jan Fitzgerald said her son, John, who has autism, used to be petrified of the sound of the drill.

“We were lucky that we found a dentist who was very patient with John,” said Fitzgerald. “We used a lot of sensory techniques to soothe him. Like we brought his Walkman in so he could hear his favorite music, and that distracted him.”

Her experience getting John braces wasn’t nearly as good.

“We had to drive over 100 miles to find a dentist who would take Medicaid,” she recalled. “Then we had to wait over an hour in the office. The boredom was very hard on John.”

In an effort to help families who have children with special needs, the Office of Mental Retardation and Developmental Disabilities (OMRDD) developed the Task Force on Special Dentistry in 2002.

Composed of about 30 dentists and clinical staff who meet three times a year at O.D. Heck in Niskayuna, the goal of the task force is sharing critical information, problem-solving and developing creative methods of addressing issues related to dental treatment of special-needs patients.

“People with disabilities have much more difficulty accessing services,” said Dr. Gary Goldstein of Niskayuna, the task force’s founder and first chairman. “I strongly believe there is a need for specific attention to dental issues that arise when treating patients who have mental retardation and developmental disabilities, and I applaud the state for taking the initiative and for their efforts on behalf of this special population.”

Variety of issues

Some of the problems facing people with disabilities include lack of wheelchair accessibility, poor daily oral hygiene, extreme fear, movement problems, lack of understanding about what is taking place, inability to verbalize pain and difficulty swallowing.

“Oral hygiene is a big challenge for many people,” said Goldstein.

Lack of dentists who are comfortable treating people with disabilities is another issue the task force is trying to tackle.

“There are so many variations in what a disability is and how people react,” Goldstein explained. “But we try to have as many people treated in community private settings as possible. One of our goals is to help bring an increased awareness for the need for this kind of training in dental schools.”

A lot of dentists will shy away from seeing people with disabilities because many of them are on Medicaid, and many dentists do not see Medicaid patients in their offices, said Goldstein.

“Many people with disabilities could probably be treated in community dental offices if the financial barrier were removed,” he added.

The task force has also come up with medical and dental history forms and social and behavioral intake forms that are available on the OMRDD Web site.

“That way, a person can go to the dentist with all that information filled out ahead of time,” said Goldstein. “It sounds simple, but it saves a lot of time and it’s so important.”

The task force also has a committee looking into anesthesia and access to operating room time for dentists in hospitals for developmentally disabled people who need to be sedated for routine dental care because they cannot sit up or sit still long enough for the procedures.

“Sometimes, patients have to wait six months to get access to dental care in the operating room unless they have an emergency, because dental care is not thought to be a priority,” said Goldstein.

Time is a concern

During a recent meeting of the task force, Doug Fisler, a Rochester parent of a developmentally disabled son, said the wait for a hospital operating room in Rochester is a year or more.

“If the person has a serious need like a swollen jaw, they can get in quickly, but for people who just need X-rays and fillings, the waiting list is long, sometimes resulting in them ending up with a more serious condition later on,” said Fisler.

Dr. Nancy Dougherty of the Bronx said the task force is also putting together an eight-hour teaching CD about providing dental care for people with disabilities.

Dr. Farah Alam of the Bronx, said some families are so overwhelmed with their child’s disability that oral health is not one of their priorities.

“A lot of times, we have to educate the parents and teach them how important their child’s dental health is and how it can impact the rest of their other medical conditions and really motivate them to make this a priority,” said Alam.

Dr. Vince Filanova of Amsterdam, devotes nearly all of his practice to working on people who are developmentally disabled.

“Whatever the special need is, you try to work with it,” said Filanova. “Sometimes, you have to position the patient a certain way to keep him upright. One time, we had to shut off all the lights in the office except for the dental lamp because the person was light-sensitive. I had one patient who liked country music — so we played country music to keep him calm during the procedure.”

Filanova said it makes him feel good to work on people with special needs.

“God gave me the privilege of being a dentist, and I figure I can try to use my talents focusing on this group,” said Filanova. “There’s nothing better than seeing someone walk into your office who three months ago wouldn’t even come into the room. It’s like ‘Wow.’ I wouldn’t have it any other way.”

Fitzgerald, executive director of Parent-to-Parent, a statewide peer support group for parents with special needs children, said today her son, John, now 22, has excellent oral health.

“Once he got over his fear, he began to understand the importance of good oral health,” she said. “He brushes and flosses every night, and he goes every six months to get his teeth cleaned. We were very lucky. I think there are a lot of families who face more challenges than we did.”

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