Curtis Murray sits rigidly in the chair at the dentist for 10 long minutes. Suddenly, he moans in distress and leaps from the seat. He runs straight from the room to his mother's car.
The 31-year-old from Lake City, Florida, has autism and has been in pain for years. He developed severe acid reflux disease when he was a teenager, which decayed his teeth over the years. Now, brushing his teeth is nearly unbearable.
Over the course of a year, he sat through appointments with two different dentists. Neither had the resources to treat him. His mother, Susan Murray, said she was consistently being referred to other dental surgeons.
According to the Florida Developmental Disabilities Council, there are about 472,644 people in Florida living with an intellectual or developmental disability. The National Center for Biotechnology Information found in 2012 that adults with intellectual disabilities struggle to find quality oral health care, and said that 32 percent of patients had untreated cavities while 80 percent had severe gum disease.
In Gainesville, the Tacachale Dental Clinic and The Center for Autism and Related Disabilities (CARD) have a common goal: make oral care a reality for people with disabilities.
Dr. Timothy Garvey is a dentist at the Tacachale Dental Clinic, which is part of a developmental disability center that cares for people with special needs. Patients from all over the state come to the center for treatment, since few dentists can cater to people like Curtis, Garvey said.
Due to COVID-19, Garvey said he is currently unable to see patients in the clinic, which is under strict lockdown to prevent the spread of the virus. The shutdown has left many, like Curtis, with canceled appointments.
Instead, Garvey has been doing emergency dental surgeries three days a week in the College of Dentistry at UF.
Garvey called Susan two weeks ago to set an emergency surgery date for Curtis after his appointment was canceled at Tacachale. Garvey had to extract nine of Curtis’ teeth during surgery on Friday. Susan said Curtis is currently in recovery and is starting to feel better.
Curtis needs to be sedated to receive dental care. The biggest issue, his mother said, is finding someone who can properly treat him and also accepts his insurance.
In order to successfully treat people with disabilities, Garvey said he has to be creative. He uses sedation to treat many of his patients but also uses an adult wrap made from velcro to keep some patients from moving during procedures.
Garvey said he makes sure to talk to his patients throughout the procedure and gives them his phone number to check on them after surgery.
Curtis uses Medicaid, a federal and state program that provides insurance for people with low incomes, to cover dental care costs.
After bouncing between different dentists, Susan said the insurance under Medicaid allowed her to see Garvey in Gainesville.
“Let's not make him suffer any longer — this kid was in pain for months and months and months,” Susan said. “I don't even know how long I was trying to get him to Garvey, which thank God we did.”
Most dentists, Garvey said, are uncomfortable with performing this kind of treatment because they were never taught in school. He also said Medicaid can discourage dentists from treating certain patients because of the lower insurance payments they receive.
“If you go to your doctor somewhere and they take your tooth out, you'll pay anywhere from probably $130 to $250 or something like that,” Garvey said. “Well, traditionally Medicaid pays me $27.”
One of the ways to fix this issue of discomfort working with people with disabilities, Garvey said, is to teach the new generation of dentists how to treat people with disabilities. While Garvey is performing surgeries at the College of Dentistry, he brings in UF students to assist him and learn.
“Now we're expecting our students to have a higher level of understanding about this, and therefore a better level of comfort with providing this kind of care,” Garvey said.
Garvey said he would like to set up dental offices specialized in treating people with disabilities strategically around Florida so there is easier access. He said the key to avoiding emergency surgeries is maintaining routine dental care. In order for patients to have routine dental care, they need to be close to dentists that have the resources to treat them.
CARD at UF is working on increasing access to oral health care for people with disabilities. Robin Byrd, coordinator of educational programs at CARD, said some doctors are discouraged to treat patients with special needs because of increased treatment costs, fear of the unknown, time-consuming procedures, untrained staff and the need for special equipment.
Byrd said CARD helps patients with disabilities tolerate treatment by developing a behavior plan specific to each patient. Before a dental appointment, Byrd will show the patient pictures of the procedure and talk them through it. Byrd said she also sometimes takes the patient into the room prior to the appointment so they can get used to the environment.
“It just really depends on the patient,” Byrd said. “I think each person with autism is unique, and each plan should be unique.”
CARD, Byrd said, also helps families find community health care services in Florida. When the family attends their dental appointment, Byrd said she helps direct them to other useful resources like speech language or occupational therapy. The team then helps the family transition back into their own community.
“I'll say, well, let's come up with a plan — let's get you some support,” Byrd said. “And they just cry.”
Even with these resources, Susan said she is unsure whether Medicaid will cover Curtis’ surgery because her plan does not include services from UF. But, the mother said she is relieved her son finally received the treatment he needed. And, Susan said, she is grateful for Curtis.
“I had the blessing of having a child with a disability,” Susan said. “It gave me a voice because I have to be his voice.”