The first time Namirah Jones visited the dentist at age 5, her meltdown brought the office to a halt. Her mother, Mia Costley, her grandmother and a dental assistant held her down while she screamed. The dentist couldn’t even get a mirror in her mouth.
“That’s when it was determined that no dentist could ever work on her; she would have to be put to sleep,” Costley said from their apartment in Corona.
Jones, now 19, has severe autism and an intellectual disability. She’s among tens of thousands of patients across the state whose disabilities — ranging from cognitive and physical disabilities like autism and cerebral palsy to complex health conditions like Alzheimer’s and Parkinson’s — require sedation during dental procedures, making basic dental care largely inaccessible.
A typical dental office cannot perform general anesthesia nor can it accommodate other disabilities requiring wheelchair lifts or other specialized equipment.
Instead, disabled patients languish on waiting lists for years at the few places that can see them — usually dental schools. When they get an appointment, it’s frequently a financial hardship requiring time off of work for caregivers, long drives from remote areas of the state, overnight hotel stays and out-of-pocket surgical fees.
“For more serious procedures people can be waiting for a year, which if you think about it, living with dental pain for a year is like torture,” said Tony Anderson, executive director of Valley Mountain Regional Center in Stockton. Regional centers oversee the coordination and delivery of services for Californians with disabilities.
The situation is untenable, said California Dental Association president Ariane Terlet. The association is asking the Legislature to include $50 million in the budget to build special needs clinics and surgery centers across the state.
“The state is responsible for ensuring access to dental care for patients with special health care needs,” Terlet said. “If California is serious about its commitment to health equity, people with special health care needs must be provided timely access to dental care.”
One of the primary reasons it’s so difficult to find a dentist is that most don’t accept Medi-Cal, the state health plan for its poorest residents, which a majority of people with disabilities rely on. In 2021, about 36% of active licensed dentists in the state accepted Medi-Cal. That number has grown by about 10% since 2017, when the state increased reimbursement rates. However, the number of Medi-Cal enrollees has also grown, reaching 14 million in the past two years.
Barnes built his surgery center specifically to address the lack of special needs providers in his area. Initially he accepted all insurance, but he said he had to start charging $850 out-of-pocket for anesthesia in order to keep his practice afloat.
“We were writing off close to $1 million a year because (insurers) weren’t paying,” Barnes said.