At the Marshfield Clinic dental center in Chippewa Falls, Wis., hygienist Karen Eslinger is getting her room ready. It's all quite routine — covering the chair's headrest with plastic, opening instruments, wiping down trays.
But then she starts getting creative.
"My next patient is pretty tiny and frail, so I like to go to oral surgery and get a heated blanket. I wrap her up, and I think it soothes her," Eslinger says.
The patient is 16-year-old Kathy Falk. She has Rett syndrome, which is a genetic disorder with a constellation of symptoms that look like cerebral palsy, Parkinson's, anxiety and autism all wrapped up together. She uses a wheelchair, can't speak and would find it difficult holding her mouth open for long stretches.
Kathy's parents lift her from her wheelchair into the dental chair. Eslinger swaddles her in the warmed blanket and fits her with tiger-striped sunglasses to block the glaring light. She narrates the entire cleaning, telling Kathy everything she's about to do, interspersed with words of encouragement.
"She's challenging to get the toothbrush in here and we can only ask so much, you know; whatever she tolerates," Eslinger says as she's bent over Kathy with an electric toothbrush. "You're doing the best you can."
For someone with severe disabilities like Kathy, Eslinger and this clinic are quite a find. They welcome patients with all kinds of physical and behavioral disabilities.
People with disabilities are often insured through Medicaid, the federal health care program for the poor and disabled. The program doesn't always pay for dental care, and when it does, those payments often fall short of the costs.
That means it can be hard to find a dentist willing and able to do the work.
Dentists and hygienists at the Marshfield Clinic take people with Medicaid and people without any insurance. They specialize in caring for people with disabilities who need extra help to get through a checkup and cleaning. Some patients with autism may be afraid of lights, sounds or touch. Some with physical disabilities may be unable to hold their head in place.
"I have a patient who comes in, and before she gets in the chair we read some books, and then she gets a little calmer and stops crying and we can do a little more of the cleaning," Eslinger says. The patient is in her 30s.
A patient with Down syndrome was so frightened that Eslinger started off cleaning his teeth in the lobby. Each appointment moved closer to the treatment room, until finally she persuaded him to get into the chair.
The work is also quite physical, says Beth Rowan, another hygienist at the clinic who cares for special needs patients.
She's down the hall from Eslinger, cleaning the teeth of Lindsay Klecker, a 31-year-old woman with cerebral palsy and a seizure disorder. Lindsay is blind and uses a wheelchair. Her mother says she functions at the level of a toddler.
Rowan leans over Lindsay, working to floss her teeth while her mother stands at her head, singing to her throughout the cleaning.
"It's hard on your body; they're strong," Rowan says. "They're pulling and tugging, their head is strong, their lips are strong, their tongue is strong."
For invasive procedures like fillings or root canals, the dentists at the Marshfield Clinic go across the street to St. Joseph's Hospital, where patients can be treated in an operating room under full anesthesia.
"There's a certain percentage of the population that absolutely requires having anesthesia for their dental care to be safe," says John Morgan, a professor in the division of special care at Tufts University School of Dental Medicine. Tufts runs a chain of clinics across Massachusetts that cares for people with disabilities.
Morgan is lead author of a 2012 study published in the Journal of the American Dental Association that shows that people with disabilities have worse oral health than the general population.
"Access to dental care is one part of the issue, but there's also the issue of what happens at home; what can be done to help improve maintenance of oral health in the home environment," Morgan says.
Kathy's mother, Arla Falk, says they tried several dentists before finding the clinic in Chippewa Falls. It's 45 minutes from their home, and they come four times a year.
"To have a dentist who would be willing to take medical assistance is a challenge," she says. "We've been to several with her. One of them didn't even want to take her on or keep her as a patient."
Three of the Marshfield clinics specialize in serving people with disabilities, and they serve more than 1,700 patients with disabilities a year.
"We do have patients that come as far as three, four hours away for a cleaning appointment or for their initial appointment," Rowan, the hygienist, says. "Then they'll have their one to two hours of care and they'll have to drive back, because there isn't anything in their surrounding area."
Two years ago, the only clinic in Madison, Wisconsin's capital, that provided dental care under anesthesia shut down because the hospital, Meriter UnityPoint Health, said it was losing more than $600,000 annually on providing dental care. It reopened this month under an agreement with two other hospitals in the city to share costs.
While the clinic was closed, Meriter officials referred the patients to the University of Minnesota, four hours away.
Jeffrey Karp, a professor at the University of Minnesota School of Dentistry who cares for children with disabilities, says he's not surprised.
"We do receive patients who come to us from Wisconsin; also from the Dakotas and parts of Iowa as well," Karp says. "There are not a lot of resources and obviously, you do need to travel larger distances to find those resources."
Karp has a grant to identify hospitals, clinics and dentists across the country that care for people with disabilities. The goal is to create networks of providers who have a commitment to providing dental care to people with disabilities despite the cost.
Greg Nycz, executive director of the dental clinics in the Marshfield Clinic network, says they get most of their costs reimbursed by Medicaid through a special provision that allows clinics that cater only to the poor to get bigger reimbursements than regular dentists.
But St. Joseph's Hospital and two others that Marshfield works with don't benefit from that. "Because we only have poor patients and patients on public assistance, this is a sacrifice for these hospitals," Nycz says. He says he's angry that large for-profit hospitals often won't make the same commitment.
Back at the clinic in Chippewa Falls, Kathy Falk has had enough. She's becoming agitated and gurgles a bit. Eslinger finishes up.
"We are all done with the cleaning," Eslinger says. "Ah, we got toothpaste everywhere, didn't we?"
Down the hall, Rowan compliments Lindsay Klecker's mother, Sandra.
"You are doing such a great job caring for her teeth," she says. "She's lucky to have had them as long as she has."
RENEE MONTAGNE, HOST:
Today in Your Health - for people with severe disabilities, it's not uncommon to travel hours, sometimes to another state, just to find a dentist. That's because they are often more complicated to treat and more expensive. Medicaid does not cover all of the costs, which means there are not that many dentists prepared to care for patients with severe disabilities. Still, there are a few. NPR's Alison Kodjak visited a network of dental clinics in Wisconsin that specialize in treating people with special needs.
ALISON KODJAK, BYLINE: At the Marshfield Clinic dental center in Chippewa Falls, hygienist Karen Eslinger is getting her room ready. Her next patient is pretty tiny and frail.
KAREN ESLINGER: And so I like to go to oral surgery and get a heated blanket. I wrap her up, and I think it soothes her.
KODJAK: That patient is Kathy Falk. She's 16 and suffers from Rett syndrome. It's a genetic disorder with a constellation of symptoms that look like cerebral palsy, Parkinson's, anxiety and autism all wrapped up together. It's people like Kathy with special needs that Eslinger tries her hardest to make comfortable.
ESLINGER: Say they're autistic and sounds bother them, lights bother them, touch, smells. They may have difficulty walking through the waiting room.
KODJAK: Eslinger does things like read them stories. She might even clean their teeth in the waiting room. She gets to know their fears and behavior issues and finds ways to calm them.
ESLINGER: We're getting a weighted blanket because sometimes they like that feeling of being secure. And so they have less behavior, and they let us do more.
KODJAK: Eslinger settles Kathy into her chair and fits her with tiger-striped sunglasses to shield her from the bright lights.
ESLINGER: You are a great helper.
KODJAK: Then she gets to work, starting with a cleaning.
ESLINGER: You know, if she's challenging to get the toothbrush in here, we can only ask so much - you know, whatever she tolerates. So do the best you can.
KODJAK: Kathy's mostly calm, but not always.
ESLINGER: See, we're going to put that sticky fluoride in your teeth.
KODJAK: Another hygienist here who cares for special needs patients is Beth Rowan. She says the work is very physical.
BETH ROWAN: It's hard on your body, and they're strong. You know, they're pulling and tugging, and their head is strong. Their lips are strong. Their tongue is strong.
KODJAK: She says each patient requires more time and often more people than a standard dental visit. And Medicaid, which covers many people with severe disabilities, doesn't pay enough to cover those extra costs. For example, when Kathy needs a filling or any more invasive work, she goes next door to St. Joseph's Hospital, where the clinic's oral surgeons put her under anesthesia and treat her in an operating room. Getting this level of care is why this clinic is such a destination.
ROWAN: We do have patients that come as far as three and four hours away for a cleaning appointment or for their initial appointment. And then they'll have their one or two hours of care, and then they have to drive back because there isn't anything in their surrounding area.
KODJAK: Kathy's parents don't go quite that far, but it does take them half a day, four times a year, to get her teeth cleaned. Her mother's just happy she found this clinic at all.
UNIDENTIFIED WOMAN: To have a dentist that would be willing to take medical assistance is a challenge. We've been to several with her. One of them didn't even want to take her on or keep her as a patient.
KODJAK: Two years ago, the only clinic in Madison, Wis., that provided dental care under anesthesia for people with disabilities shut down because the hospital said it was losing more than $600,000 a year caring for the disabled. And even though there are several big hospitals in Madison, no one else stepped up. So officials referred patients to the University of Minnesota, more than 250 miles away. Jeffrey Karp is a dentist at the University of Minnesota who cares for kids with disabilities. He says that doesn't surprise him.
JEFFREY KARP: We do receive patients who come to us from Wisconsin, also from the Dakotas, northern parts of Iowa as well. But there's not a lot of resources. And obviously, you do need to travel larger distances to find those resources.
KODJAK: The problem isn't just in Wisconsin, it's the same across the country. In fact, Karp has a grant to identify hospitals, clinics and dentists who care for people with disabilities. The goal is to create networks of providers that treat people with disabilities despite the cost, like the Marshfield Clinic in St. Joseph's Hospital. He says they're unusual because they're in such a rural area and aren't connected to a major academic medical center with lots of resources.
KARP: So someone in Wisconsin, whether it was the hospital or the dental providers or somebody, mobilized people to make this happen.
KODJAK: That someone is Greg Nycz, the executive director of the nine dental centers that are part of the Marshfield Clinic network. They serve more than 1,700 disabled patients a year.
GREG NYCZ: Because we only have poor patients and publically insured patients, this is a sacrifice from these hospitals. And it bothers me that some of our bigger urban hospitals have closed these practices.
KODJAK: The clinic gets most of its cost reimbursed by Medicaid. The hospital gets some reimbursement, but the rest is charity. Back at the clinic in Chippewa Falls, Kathy Falk has had enough of the dentist's chair. She's becoming agitated, and Karen Eslinger decides to finish up.
ESLINGER: There, all done with the cleaning. Oh, I get toothpaste everywhere, don't we?
KODJAK: These clinics provide a huge portion of the dental care to people with disabilities in Wisconsin, but there's some good news that may lighten the load. The clinic in Madison that closed two years ago has announced it's reopening to people with disabilities. Alison Kodjak, NPR News, Chippewa Falls, Wis. Transcript provided by NPR, Copyright NPR.