‘This is a crisis’: In Wisconsin, special needs patients may wait years for sedated dental care

IOWA COUNTY, Wis. — Trent Scullion’s life began with death.

It was 32 years ago that Trent’s mother Karen said his heart stopped beating twice during his long-overdue birth and subsequent medical procedures. Oxygen at one point was cut off to his brain. At four months old, doctors diagnosed him with cerebral palsy. He’s never walked or talked (with a small exception for a few forceful words), and has lived in a wheelchair since he was 2 years old.

That hasn’t stopped him from a life filled with education in the Highland School District, communication with sign language and a tool on his wheelchair, and a host of adoring friends at his adult daycare in Iowa County.

“Trent’s a really smart young man,” Karen said. “If he could talk, I don’t know what his career would be, but it would be something high: He doesn’t ever forget anything and he’s very intelligent.”

But today, his mother agonizes over something he can’t communicate: intense pain from decaying teeth, missing crowns, and a host of cavities. He hasn’t had dental care in more than three years, and Karen is at her wits’ end trying to find a dentist willing to take him.

“Three years without a cleaning; three years without a filling,” Karen said. “The other day he told us [through his communication device] his tooth on this side was hurting. I looked; his crown fell off.”

People with severe disabilities often need either IV sedation in a dentist’s office or dentistry services provided while fully under anesthesia in a hospital’s operating room. Everywhere she’s called either has a years-long wait list or is refusing patients who live outside Dane County, she said. An office in Milwaukee specializing in dental care for people with disabilities told her they had a two-year wait list. Others had the same.

Last fall, it started escalating into a crisis that his regular doctors could only address through short-term solutions like antibiotics.

“His face turned white. He didn’t respond. He didn’t eat. And he kept pointing to his tooth. I could see on the side of his face was swollen,” she said. “I brush his teeth. I try to take the best care of his teeth as I can. But I can’t find a dentist; nobody will take him.”

Karen is far from alone. Experts estimate a few hundred adults with special needs are impacted by a lack of sedated dental care in Wisconsin–a problem driven by a mix of complicated factors. Several days after interviewing with News 3 Investigates, Karen texted to say a chance cancellation on a years-long waitlist for one Dane County dentist meant Trent now had an appointment in July.

Others, however, are still waiting.

An escalating crisis

While it’s never been easy for people with disabilities to access dental care, the problem grew much worse after the only dental residency program in Wisconsin closed down seven years ago.

“This is, truly, a crisis,” said Dr. Patrick Tepe. “This is not just a south central Wisconsin problem; this is a statewide issue.”

Dr. Patrick Tepe practices at Associated Dentists in Verona, and currently serves as the legislative advocacy committee chair for the Wisconsin Dental Association–for which he was also a former president. The issue, he says, is driven by a plethora of complex factors: it worsened after the shuttering of the state’s only hospital dental residency program, but it’s driven and exasperated by meager Medicaid reimbursement and a lack of prioritization at a state government level. It applies most to adult patients, as pediatric dentists are more likely to be equipped with some in-office sedation capabilities.

“Most general dentists are not trained to provide IV sedation or operating room dentistry,” Dr. Tepe explained. (One exception is oral surgeons, who can do things like teeth extractions but can’t provide the basics of cleanings and fillings.) “The operating room is an additional barrier, because a hospital has to be willing to give a willing and skilled dentist the operating room time. And that, unfortunately, does not happen very often.”

He used to be part of the faculty for a general practice residency program at UnityPoint Health-Meriter Hospital in Madison, a dental training program he said had three residents in training that provided this type of dentistry for a “couple of hundred” adult patients with these needs across Wisconsin. It was the only program like it in Wisconsin; a spokesperson for Meriter said it closed several years ago when its leader retired.

“That was a huge void that never was replaced,” he explained. The problem isn’t new; even when it was operating, Dr. Tepe said Meriter’s program typically had a wait list for sedated services. But the gap it left when it closed means the issue grew exponentially worse.

Even though its residency program had to close, the hospital is still one of the few offering operating rooms to dentists in Wisconsin who can provide the care. When the clinic closed, which the Wisconsin State Journal reported was losing almost $600,000 every year, the hospital joined forces with UW Health and SSM Health to provide a community dentist instead.

“We have worked with our community partners, including UW Health, SSM Health, Access Community Health and private dentists to care for patients who require hospital sedation dentistry,” a spokesperson said in an email. “Meriter provides the necessary [operating room] space, staff and anesthesiologist and the hospital partners work together to ensure the program is appropriately funded.”

For south central Wisconsin, Dr. Tepe said most of the burden of sedated dental care is now in the hands of a rapidly-dwindling group of dentists in Dane County who have the specialized training needed to either offer sedation in their offices or provide their services at a local hospital’s operating room. A couple of those dentists have recently retired, Dr. Tepe said, and those that remain have been forced to become even more selective in who they’re able to serve.

The result is years-long wait lists for sedated dental care in Dane and Milwaukee counties, even for those like Trent who didn’t use the residency program when it was open. It’s also led to some dentists setting residency requirements for patients: Trent’s long-time dentist told the family about three years ago that they were no longer accepting patients outside of Dane County; ever since, every dentist able to provide sedation that his mother called has had years-long wait lists or refused to accept new patients.

Funding, logistics fuel the problem

One factor at the heart of the issue: Medicaid reimbursement for this niche of dentistry is low, and lacks definitions that would allow providers to be easily reimbursed. That leaves dentists with little financial incentive to invest in specialized training or–if they have it–to find room to book those patients in their schedules.

“The Medicaid system is kinda deficient in its coding and its logistics on getting…the reimbursement and approvals to the people that need it,” Dr. Tepe said. As a state-operated federal program, the blame falls on both the state and U.S. governments.

Both the Wisconsin Dental Association and Wisconsin Hospital Association have tried to convince the state to streamline the logistical process for connecting people with special needs with sedated dental care, Dr. Tepe said. “But it’s been very slow, and not prioritized.”

The state’s only dental school at Marquette University has recently introduced curriculum changes and a hospital collaboration to train dental students on some types of special needs care–a step in the right direction, but one that will take years to start having an impact.

“As much as this is a great crisis, we are not talking about thousands of individuals. We’re talking about hundreds on a state level, so we’re not talking about large dollar amounts,” Dr. Tepe said. “Unfortunately, too many people are not aware of this. This is a population that can’t really speak for themselves.”


Photojournalist Lance Heidt contributed to this report. Naomi Kowles can be reached at news3investigates@wisctv.com