For People With Disabilities, Getting Dental Care Can Be Difficult : Shots - Health News People with serious disabilities and their caregivers often struggle to find dentists who have the ability and desire to take care of their teeth. Cost is another issue.

Getting Dental Care Can Be A Challenge For People With Disabilities

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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.

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