When Ava Terranove began to feel oral pain last July, her parents took her to her regular dentist. The dentist found that Ava, which has an autism-like condition, needed two root canal procedures to treat infected teeth.
Due to her developmental disability, Ava, now 15, requires general anesthesia for non-dental treatment. The dentist, like most of his peers, was not equipped to give it.
Girl's parents, school teachers living in Huntington Beach, California, called other dental offices in the region. They were knocked down dozens of times before finally finding a dentist prepared to work with an anesthetist to treat their daughter.
But there was a hitch: Insurance would not cover general anesthesia for root canals. Then Ava's parents decided to pay $ 2,400 from their savings to make sure their daughter was promptly cared for.
"What about children who do not have parents who are professional or who have no one to advocate for them?" Donny Terranove, Ava's father, asked.
People with autism, cerebral palsy and other developmental disorders face enormous barriers to appropriate and timely dental care ̵
But most dentists do not offer it and getting insurance to cover it for routine dental work is often a struggle.
Because it is difficult for them to get treatment, people with developmental disorder suffer "a high burden on dental disease," according to a 2012 study of more than 4,700 patients published in the Journal of the American Dental Association. 32% of the patients studied suffered from untreated cavities and 80 percent from severe chewing gum infections.
"Many people with developmental disabilities cannot personally maintain their own dental care," according to a September study from the California Legal Analyst's Office (LAO). "Often they need extra appointments or special homes that dentists cannot or will not give."
In many cases, patients need these additional appointments to help them get used to the environment of a dental office, including equipment, procedures, and personnel. This can help minimize their anxiety and reduce the need for deep sedation or general anesthesia.
But sometimes there is no alternative to anesthesia.
Mike Loughran, 54, from Tacoma, Wash., Has a 14-year-old son with Down's syndrome and autism. After many years of unsuccessful attempts to complete a basic checkup, Loughran and a willing dentist concluded that the child should have general anesthesia for all dental work. This led to heavy taxes.
For a routine 45-minute exam that found no problems, the anesthesia bill was $ 1,155. Loughran's insurance company, Tricare, adjusted it to $ 912 – an amount he described as "very reasonable." But the hospital charged nearly $ 21,000 for the operating room. Tricare agreed coverage and negotiated the price down to about $ 15,000. It left Loughran with a $ 2,500 out-of-pocket payment. He later got the state's Medicaid program to cover most of this amount as his son's secondary insurance company.
Still, Loughran was surprised by the astronomical amount charged for his son's care. "The whole idea of it costs so much to get a dental test and you have to do it a couple of times a year – it was just great when I got the bill," he said. "I don't think I'll take him to the operating room anymore."
Without access to regular cleaning and other preventive treatment, "you come to the point that you need anesthesia because you've got a small problem that has been achieved great," says Eileen Crumm, CEO of Family Resource Navigators, a lawyer group in Alameda County, California.
To accommodate the many patients in need of general anesthesia, some hospitals and regional disability centers allocate a limited amount of surgical time to dental care. However, due to the strong demand for these services, it may take many months or even more than a year to reserve an available operating site, says patient lawyers.
Mariana Murillo, like trouble finding appropriate care some years ago for son Oscar, 20, who has cerebral palsy and cannot communicate verbally. Oscar, a teenager at that time, had pain from influenced wisdom teeth, and his regular dentist said an oral surgeon would have to extract them. But Murillo, who lives in Lompoc, California, found it difficult to find someone who would accept Denti-Cal, the state's Medicaid-funded dental cover for low-income people.
Murillo ended up paying $ 1,600 in the pocket of an oral surgeon. The surgeon was in favor of extracting Oscar's four wisdom teeth, while the boy was already under general anesthesia to remove benign growth on the tongue – a procedure covered by Oscar's health insurance.
"Our financial situation is not great, but it wasn't that bad," Murillo said. "Knowing Oscar should be free from the pain we decided to do."
In some states, officials and private organizations are trying to address this great unnecessary need in patients who are silent, unable to articulate their distress.
For example, New Mexico has a specific Medicaid billing code that entitles dentists to an additional training program at an additional $ 90 fee each time they treat a patient with developmental disabilities. And New York University's College of Dentistry has recently opened a center strictly for the care of people with disabilities.
In California, most patients with developmental disabilities are eligible for Denti-Cal care, but only one-fifth of state dentists accept it. And only one-fifth of developmentally disabled patients with Denti-Cal received another dentist in 2014, 2015 or 2016 according to the LAO report.
Last year, the state awarded $ 210 million in tobacco taxes to increase payments to Denti-Cal providers for the 2018-19 financial year – up $ 70 million from the amount of tobacco tax money it had earmarked for the purpose of the previous year. Federal matching dollars bring the total amount of new money to the program to as much as $ 600 million. The latest boost will help pay for the extra time needed to treat patients with special needs as well as anesthesia.
A particularly difficult challenge for patients with developmental disabilities is the transition from pediatric to general dentists as they age, said Joseph Castellano, president of the American Academy of Pediatric Dentistry, who practices in Laredo, Tex. This is because pediatric specialists generally get an education in working with that population, while general dentists tend to have little or no such experience.
"A many times [patients] will just stay in [pediatric] practice," Castellano said. "We know the patients and are familiar with them and they and the families are comfortable with us."
Wade Banner, a Southern California dentist, took the case in his own hands in 2014 when he launched a mobile dental program and began making home calls to patients with developmental disabilities. Banner, which has a nephew with autism, said he wanted patients to receive basic care in an environment where they felt most comfortable and less likely to require greater sedation.
Listing of the providers for patients in need of general anesthesia, Banner said, "One of my main goals in starting house-call dental care was to prevent them from sleeping if possible."
This report was produced by Kaiser Health News, which publishes California Healthline, an editorial independent service from the California Health Care Foundation. KHN is not affiliated with Kaiser Permanente.