{"id":245742,"date":"2022-05-17T05:30:00","date_gmt":"2022-05-17T12:30:00","guid":{"rendered":"https:\/\/calmatters.org\/?p=245742"},"modified":"2022-05-18T11:21:00","modified_gmt":"2022-05-18T11:21:00","slug":"special-needs-dental-patients","status":"publish","type":"post","link":"https:\/\/calmatters.org\/_es\/health\/2022\/05\/special-needs-dental-patients\/","title":{"rendered":"'Como una tortura': para los californianos con necesidades especiales, ir al dentista puede llevar a\u00f1os"},"content":{"rendered":"
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En resumen<\/strong><\/p>\n\t\t\t\t\n\n\t\t\t\t\n\t\t\t\t

Decenas de miles de californianos con discapacidades requieren adaptaciones especiales para el cuidado dental, pero s\u00f3lo 14 centros en el estado pueden tratarlos.<\/p>\n\t\t\t\t\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\n\t\t\n

Lea este art\u00edculo en\u00a0<\/em>espa\u00f1ol.<\/em><\/a><\/p>\n\n\n\n

Update: This story was updated May 17, 2022 to reflect the most recent percentage of dentists in the state who accept Medi-Cal<\/em>.<\/p>\n\n\n\n

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\u2019t even get a mirror in her mouth.<\/p>\n\n\n\n

\u201cThat\u2019s when it was determined that no dentist could ever work on her; she would have to be put to sleep,\u201d Costley said from their apartment in Corona.<\/p>\n\n\n\n

Jones, now 19, has severe autism and an intellectual disability. She\u2019s among tens of thousands of patients across the state whose disabilities \u2014 ranging from cognitive and physical disabilities like autism and cerebral palsy to complex health conditions like Alzheimer\u2019s and Parkinson\u2019s \u2014 require sedation during dental procedures, making basic dental care largely inaccessible.<\/p>\n\n\n\n

A typical dental office cannot perform general anesthesia nor can it accommodate other disabilities requiring wheelchair lifts or other specialized equipment.<\/p>\n\n\n\n

Instead, disabled patients languish on waiting lists for years at the few places that can see them \u2014 usually dental schools. When they get an appointment, it\u2019s 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.<\/p>\n\n\n\n

\u201cFor 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,\u201d said Tony Anderson, executive director of Valley Mountain Regional Center in Stockton. Regional centers<\/a> oversee the coordination and delivery of services for Californians with disabilities. <\/p>\n\n\n\n

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.<\/p>\n\n\n\n

\u201cThe state is responsible for ensuring access to dental care for patients with special health care needs,\u201d Terlet said. \u201cIf California is serious about its commitment to health equity, people with special health care needs must be provided timely access to dental care.\u201d<\/p>\n\n\n\n

\u201cFor 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.\u201d<\/p>Tony Anderson, executive director of Valley Mountain Regional Center in Stockton<\/cite><\/blockquote><\/figure>\n\n\n\n

Jones is non-verbal and, like many people with autism spectrum disorder, is hypersensitive to certain sights, sounds and sensations, making the dentist\u2019s office a nightmare.<\/p>\n\n\n\n

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. <\/p>\n\n\n\n

UC San Diego said Jones, then 16, was too old for their pediatric clinic. The University of Southern California never called back. Only UCLA\u2019s\u2019 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 \u2014 all for a routine teeth cleaning and cavity filling.<\/p>\n\n\n\n

\u201cAs her parent and caregiver, it\u2019s triggering and traumatizing to watch,\u201d Costley said.<\/p>\n\n\n\n

Not enough providers<\/h3>\n\n\n\n

Without a centralized database, the number of patients that need special dental care is hard to quantify. Approximately 1.3 million children<\/a>, or 15% of all children, in the state have chronic physical, developmental or behavioral conditions \u2014 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\u2019s growing aging population includes 690,000 seniors with Alzheimer\u2019s disease.<\/p>\n\n\n\n

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\u2019s often difficult to book operating time.  <\/p>\n\n\n\n

\u201cWhen I started, roughly 20% of our adult consumers needed hospital dentistry or surgery center dentistry,<\/em>\u201d said Karissa McGuffin, dental coordinator at Valley Mountain Regional Center, which serves San Joaquin, Stanislaus, Amador, Calaveras and Tuolumne counties.<\/p>\n\n\n\n

McGuffin was hired in 2019 to address the severe need for dental care among the center\u2019s 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.<\/p>\n\n\n\n

One of the primary reasons it\u2019s so difficult to find a dentist is that most don\u2019t 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<\/a>. However, the number of Medi-Cal enrollees has also grown, reaching 14 million in the past two years. <\/p>\n\n\n\n

\u201cIn our five counties we don’t have a single <\/em>(hospital) or surgery center for dentistry that takes Medi-Cal,\u201d Anderson said.<\/p>\n\n\n\n

Even private insurance is reluctant to reimburse a dentist for anesthesia, frequently claiming that it\u2019s not medically necessary, said Richard Barnes, a dentist in Visalia who runs a private practice and surgery center.<\/p>\n\n\n\n

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.<\/p>\n\n\n\n

\u201cWe were writing off close to $1 million a year because (insurers) weren\u2019t paying,\u201d Barnes said. <\/p>\n\n\n\n

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 \u2014 but he still wishes he could do more.<\/p>\n\n\n\n

\u201cThe phone rings all day long, but we\u2019re excluding a lot of patients right now because we have to charge them,\u201d Barnes said. <\/p>\n\n\n\n

De acuerdo a un informe 2018<\/a> from the Legislative Analyst\u2019s 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 \u2014 20% \u2014 saw a dentist in the same time period.<\/p>\n\n\n\n

Nowhere to turn<\/h3>\n\n\n\n

With few options, special needs patients and their families drive hours to see a dentist<\/a>, said Eric Sung, chair of special patient care at UCLA\u2019s dental school and Jones\u2019 dentist. About 36% of Sung\u2019s patients drive between one and two hours to the UCLA clinic while an additional 30% drive more than two hours.<\/p>\n\n\n\n

\u201cThey’re coming in from Palm Desert or Lancaster and Bakersfield,\u201d Sung said. \u201cI\u2019m getting people from really far away.\u201d<\/p>\n\n\n\n

Rebecca Creede\u2019s son, CJ, is one of those patients. CJ, 9, is autistic and broke a tooth a few months ago. <\/p>\n\n\n\n

\u201cThe ones that are supposed to accept Medi-Cal can\u2019t do the work, and they\u2019re dumbfounded. They don\u2019t know where to send you,\u201d 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\u2019s exasperating, Creede said, because CJ is non-verbal and can\u2019t tell her if he\u2019s in pain. Every dead end is another day that he might be suffering.<\/p>\n\n\n\n

\u201cI just kind of gave up after a while. A lot of parents give up.\u201d<\/p>Laura Mulvihill, parent to a 26-year-old with severe autism and a seizure disorder<\/cite><\/blockquote><\/figure>\n\n\n\n

\u201cIt\u2019s really frustrating that there\u2019s not somewhere in local areas or in each region that can take care of your kids with special needs,\u201d Creede said. <\/p>\n\n\n\n

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.<\/p>\n\n\n\n

\u201cDr. Barnes, he was absolutely amazing,\u201d Creede said, but he shouldn\u2019t 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. <\/p>\n\n\n\n

\u201cI comment that we had to go to Visalia, and they\u2019re like, \u2018Are you serious?\u2019\u201d Creede said. \u201cA lot of people don\u2019t have the means.\u201d<\/p>\n\n\n\n

It\u2019s 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. <\/p>\n\n\n\n

Although use of Medi-Cal dental benefits among all adults <\/em>has doubled in the past seven years, it still remains far below childhood visits. <\/em>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.<\/p>\n\n\n\n