‘Like torture’: For Californians with special needs, getting to see a dentist can take years

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Update: This story was updated May 17, 2022 to reflect the most recent percentage of dentists in the state who accept Medi-Cal.

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.”

“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.”

Tony Anderson, executive director of Valley Mountain Regional Center in Stockton

Jones is non-verbal and, like many people with autism spectrum disorder, is hypersensitive to certain sights, sounds and sensations, making the dentist’s office a nightmare.

In 2019, she began touching her mouth repeatedly. Her mother worried she was in pain and called Loma Linda University School of Dentistry, where she had previously been able to get her teeth cleaned under sedation. This time, they said her weight gain made the procedure too risky. 

UC San Diego said Jones, then 16, was too old for their pediatric clinic. The University of Southern California never called back. Only UCLA’s’ dental school would see her, but the next available appointment was 16 months out. It would be another three months from the initial visit before Jones could be scheduled for surgery. She fought the anesthesiologist until she fell asleep — all for a routine teeth cleaning and cavity filling.

“As her parent and caregiver, it’s triggering and traumatizing to watch,” Costley said.

Not enough providers

Without a centralized database, the number of patients that need special dental care is hard to quantify. Approximately 1.3 million children, or 15% of all children, in the state have chronic physical, developmental or behavioral conditions — although of course not all of those require special dentistry. The Department of Developmental Services also serves an estimated 330,000 individuals with disabilities. And California’s growing aging population includes 690,000 seniors with Alzheimer’s disease.

But, according to the dental association, there are only 14 dental schools and surgery centers that can handle these special needs patients. Some hospitals give dentists admitting privileges to perform surgery, but they say it’s often difficult to book operating time.  

“When I started, roughly 20% of our adult consumers needed hospital dentistry or surgery center dentistry,” said Karissa McGuffin, dental coordinator at Valley Mountain Regional Center, which serves San Joaquin, Stanislaus, Amador, Calaveras and Tuolumne counties.

McGuffin was hired in 2019 to address the severe need for dental care among the center’s 18,000 consumers. The inability to find a dentist was the No. 1 issue facing their clients, she said, and 20% is likely an undercount.

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. 

“In our five counties we don’t have a single (hospital) or surgery center for dentistry that takes Medi-Cal,” Anderson said.

Even private insurance is reluctant to reimburse a dentist for anesthesia, frequently claiming that it’s not medically necessary, said Richard Barnes, a dentist in Visalia who runs a private practice and surgery center.

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. 

He subsidizes the loss from the surgery center with the rest of his dental practice. In a normal year, he sees around 2,000 special needs patients from across the state — but he still wishes he could do more.

“The phone rings all day long, but we’re excluding a lot of patients right now because we have to charge them,” Barnes said. 

According to a 2018 report from the Legislative Analyst’s Office on improving dental access for patients with disabilities, only a third of Medi-Cal enrollees received any dental care between 2014 and 2016 while even fewer regional center clients — 20% — saw a dentist in the same time period.

Nowhere to turn

With few options, special needs patients and their families drive hours to see a dentist, said Eric Sung, chair of special patient care at UCLA’s dental school and Jones’ dentist. About 36% of Sung’s patients drive between one and two hours to the UCLA clinic while an additional 30% drive more than two hours.

“They’re coming in from Palm Desert or Lancaster and Bakersfield,” Sung said. “I’m getting people from really far away.”

Rebecca Creede’s son, CJ, is one of those patients. CJ, 9, is autistic and broke a tooth a few months ago. 

“The ones that are supposed to accept Medi-Cal can’t do the work, and they’re dumbfounded. They don’t know where to send you,” Creede said. In the past two years, Creede, who lives in Redding, has driven CJ to Stockton, San Francisco and most recently Visalia for dental care. It’s exasperating, Creede said, because CJ is non-verbal and can’t tell her if he’s in pain. Every dead end is another day that he might be suffering.

“I just kind of gave up after a while. A lot of parents give up.”

Laura Mulvihill, parent to a 26-year-old with severe autism and a seizure disorder

“It’s really frustrating that there’s not somewhere in local areas or in each region that can take care of your kids with special needs,” Creede said. 

Eventually, she found Barnes in Visalia. The Creede family saved up money for two months in order to afford the out-of-pocket anesthesia fee. They rented a car and a hotel room and drove seven hours south. It cost them $2,500 altogether. CJ got a root canal and dental restoration on two teeth.

“Dr. Barnes, he was absolutely amazing,” Creede said, but he shouldn’t be the only one who could treat CJ. Frequently she sees messages from parents in local special needs Facebook groups asking where to find a dentist for their kids. 

“I comment that we had to go to Visalia, and they’re like, ‘Are you serious?’” Creede said. “A lot of people don’t have the means.”

It’s even harder for adults with special and complex health needs to find a dentist. Medi-Cal is more likely to reimburse sedation for children than for adults, and while many pediatric dentists have some experience working with special needs patients, most adult dentists do not. 

Although use of Medi-Cal dental benefits among all adults has doubled in the past seven years, it still remains far below childhood visits. In 2019, nearly two-thirds of Medi-Cal kids ages 6-9 had an annual dental exam while only 22% of adults ages 21-34 and 27% of seniors ages 65-74 saw a dentist.

“You get told no a lot,” said Laura Mulvihill, whose 26-year-old son Troy has severe autism and a seizure disorder. “I just kind of gave up after a while. A lot of parents give up.”

Troy hadn’t seen a dentist for 16 years before they found Barnes. Like the Creedes, Mulvihill had to get a hotel room and drive four hours to get to the clinic. Troy had three cavities.

It’s a common story, said Sung, the dentist at UCLA, where the waiting list is more than a year long. “A lot of families, literally when I see them on screening day, meaning one year after they called, say it’s been a decade or more since they’ve seen a dentist,” Sung said.

By the time adult special needs patients find a dentist that can accommodate them, their dental disease may have become severe.

“Unfortunately, once in a while it’s not one or two cavities, it’s 20 cavities or we’re taking a lot of teeth out,” Sung said.

Improving access improves outcomes

For a lot of special needs patients, facilities designed to handle their needs could cut down wait times and reduce the need for sedation, which carries risks. 

Desensitization to simple procedures is possible for patients with mild to moderate behavioral difficulties. Patients with physical disabilities, too, generally just need a facility with wheelchair lifts or a space that can accommodate a gurney. 

Richard Kunihira, a dentist in the Inland Empire, has operating room privileges at Kaiser Fontana but tries to reduce patients’ need for sedation to once every two years or so. He takes the time to get patients used to the dental office and the sensations in their mouth and teaches parents and caregivers how to gently brush their teeth at home.

At his private practice, he sees one to three special needs patients a day, 80% of whom are on the autism spectrum and a majority of whom are on the moderate to severe end. Some of the patients who previously struggled now allow teeth cleaning and X-rays to be done without sedation. It’s hard, however, for most practices to operate this way.

“Most dentists aren’t going to find that spending the time is economically feasible,” Kunihira said. “It is unfortunately the nature of the system.”

The state Department of Health Care Services now allows dentists to bill Medi-Cal for extra time spent on special needs patients, but the time must be accompanied by a procedure.

“There might not be a procedure (to reimburse),” Sung said. “You need to desensitize them, have them come in, visit you and perhaps not perform work at all. The second time, come a little bit closer. Look in your mouth and maybe touch therapy just so that they get used to the whole experience, the new environment.”

But if more dentists were able to accommodate special needs patients, it would help those with more intensive needs.

“The problem is, the number of people able and willing to see special needs patients in the private sector is fairly low,” Sung said. “They are referring to university. So when we see that population plus the extremely sick, we’re basically being overwhelmed.”

Back in Corona, Jones, 19, hurriedly jams a toothbrush in her mouth for barely 10 seconds before putting it down. 

“You’re doing good. You’re doing awesome,” Costley says, taking over. She holds her daughter’s hand and gently runs the bristles over Jones’ teeth and tongue. “Uh uh, we’re almost done,” Costley says when Jones tries to push her hand away. 

Jones has made a lot of progress in the past three years. She’s learning how to brush her teeth, do the laundry and wash the dishes. She’s less combative and doesn’t exhibit as many signs of frustration. Right now, Costley is teaching her how to use a speaking device to answer yes/no questions and increase her vocabulary. She has her practice the phrase “I want burrito,” and when Costley asks if Jones loves her, she giggles and presses the “yes” button.

In a lot of ways Jones is just like any other teenager. She tries to get out of her chores and loves to hide in her room. Her bed sports a Rick and Morty bedspread, and accents of hot pink (her favorite color) adorn the room. She’s been listening to a lot of Lizzo and 90s R&B, and likes to watch “King of the Hill” on TV. Her favorite body sprays are neatly lined up on a shelf. 

Despite the progress she has made, Costley doesn’t think Jones will ever be able to see a dentist without sedation.

“She doesn’t like brushing her teeth. She has to be prompted. I think it’s a sensory issue. She doesn’t like the top brushed or the tongue,” Costley said.

Although her daughter’s teeth seem fine now, Costley is preparing to put in a request for an appointment at UCLA. She knows the year and a half wait means they have to start planning now.

“My daughter is not a burden,” she said. “It’s everything else that’s a burden.”

CalMatters COVID and health care coverage is supported by grants from the Blue Shield of California Foundation, the California Health Care Foundation and the California Wellness Foundation.