For most adults, a cavity calls for a quick prick of Novocain and a 20-minute filling. But for 40-year-old Tina Lumbley of Moreno Valley, Calif., the routine procedure was a day-long ordeal.
Lumbley has autism, a developmental disorder that makes the sounds, smells, tastes and bright lights of the dentist's office overwhelming.
"She would get so anxious and have meltdowns," Lumbley's mom, Marjorie, told ABC News. "When she was a child, we had a great pediatric dentist and she was fine. But as she got older, it just wasn't working."
Most dentists refused to take Lumbley after she turned 18. And the few who were willing would only treat her under general anesthetic, which raises the risk and price of the procedure.
Lumbley is not alone. Across the country, adults with intellectual disabilities suffer from a lack of access to dental care.
"It's the biggest health care problem in the country today," said Dr. Steven Perlman, professor of pediatric dentistry at Boston University School of Dental Medicine. "People with intellectual disabilities are the most medically underserved population we have, and dental care is by far the most unmet need."
Adults with disabilities are usually covered by Medicaid. But the reimbursement rate is so "pathetically low that no dentist wants to participate in the program," Perlman said. And they don't have to. Dental schools are not even required to teach students how to treat disabled patients.
"These kids are coming out of school with huge loans," said Perlman. "What are they going to do when they get out? I'll tell you who they're not going to treat: people who are poor or disabled."
In 2009, California dropped dental coverage for all adults on Medicaid. That prompted Marianne and Russell Benson to open We Care, a nonprofit that brings free dental care to people with disabilities.
"We need to take care of our own," said Marianne Benson, whose 42-year-old son Kevin has autism and mild mental retardation. "Some of the patients we've been seeing never brush their teeth; some have never seen a dentist before."
Now Lumbley, with her parents, makes the hourlong trip to the Rancho Mirage-based dental clinic where she gets cleanings and fillings like any other patients, without general anesthetic. The clinic has four dentists and student volunteers from nearby Western University of Health Sciences College of Dental Medicine.
"They treat her with dignity and respect and expect her to come out with a beautiful smile," said Marjorie Lumbley. Other dentists, she recalled, suggested pulling her daughter's teeth. "Yes, Tina has a lot of challenges but she has a right to have decent teeth."
Having healthy teeth and gums not only looks good; it also guards against disease. And for people with disabilities who are unable to communicate, a minor toothache can quickly evolve into a major emergency.
"Countless people wind up hospitalized for behavioral reasons when it's just an abscessed tooth," said Perlman. "They're just falling through the cracks."
After treating John F. Kennedy's sister Rosemary, who had an intellectual disability, Perlman teamed with Special Olympics founder Eunice Kennedy Shriver to launch Special Olympics Special Smiles, a nonprofit founded in 1993 that provides dental care to athletes and people with disabilities.
"But these people don't need charity, they need a program," he said, adding that nonprofits and free clinics can't solve the national crisis. "We need to get people with intellectual disabilities to be declared a medically underserved population in the eyes of the federal government."
The move would rouse resources for dentists and give students incentives to specialize in treating people with disabilities, Perlman said. But efforts to get people with disabilities on the list of medically underserved populations continue to come up short.
People With Disabilities Lack Access to Dental Care
Marjorie Lumbley said she's grateful for We Care but worries about the future, as her daughter's dental and medical needs will surely grow.
"They have all the same things that go along with people getting older, but they still have these needs that can't be met any other way," she said. "I think people forget what happens to them after they grow up. They're not cute anymore. She's 40 years old and she deserves good care."