New St. Louis program provides dental care to severely disabled
Cassandra Holland, 42, of St. Louis, has spastic quadriplegia cerebral palsy. She uses a wheelchair because her muscles are rigid and stiff. She’s prone to seizures. She can’t speak.
For years, her mom and caretaker, Sallye Holland, 69, struggled to find a dentist for Cassandra. Each time, they would stop Sallye short when she told them Cassandra has special needs, how they would have to take extra care with her.
“They would tell me that they are not trained or equipped or have whatever they need to treat her,” Sallye said. “They would just refer us to somebody else or just say they couldn’t do it.”
Sallye eventually couldn’t get her daughter to open her mouth so she could brush her teeth. She could see some of Cassandra’s teeth were chipped and turning black.
Sometimes, an infection would cause the side of Cassandra’s face to swell. Sallye would have to take her to the emergency room, where she was prescribed antibiotics and told to follow up with a dentist.
Sallye called every dentist she could.
“No one could seem to help me,” she said. “I got the point where I called the same people over and over again.”
She decided to try calling the human resources department at Barnes-Jewish Hospital. She didn’t know the department is for Barnes employees. The name sounded like they help people in tough situations.
The woman who answered heard Sallye’s story and put her on hold. Sallye waited for more than 10 minutes. The woman eventually got back on phone — with an appointment for Cassandra.
“Oh, my God, I can’t tell you what that meant to me. I get so emotional every time I tell that story,” Sallye said, choked by tears, “because it was, like, the difference. It was everything. That’s when things started changing for us.”
A year ago, Cassandra was among the first patients to receive care through a program created by the hospital, the dentistry school at A.T. Still University and Affinia Healthcare to serve adults with severe disabilities whose only way to receive dental care is under general anesthesia in a hospital.
Sixteen people have now received care through the program. Affinia provides the patients, the university supplies the dentists and Barnes provides the support staff and operating room for the procedures on the first and third Thursdays of the month.
“This is a group in the community that was really marginalized and overlooked for a long time, as people didn’t know how to do it, how to help them,” said Dr. Jackie Martin, vice president of perioperative services at Barnes.
“It’s really a testament of key stakeholders coming together who are interested in solving an issue and have a shared mission and shared vision in figuring out how to get it done.”
Only other in Kansas City
The partnership between Kirksville-based A.T. Still University and Affinia Healthcare, which cares for Medicaid patients, started back in 2015 when they opened the 93-chair St. Louis Dental Center just south of downtown St. Louis.
The university supplied faculty and third- and fourth-year dental students to provide dental care at the center for Affinia’s patients and others in need.
Most dentists do not accept Medicaid patients, explained Dr. Dwight McLeod, dean of the university’s Missouri School of Dentistry and Oral Health. The hope was not only to provide care for the marginalized but also inspire more students to work as dentists in underserved areas.
The center quickly began seeing a need for care among patients with disabilities, McLeod said. Leaders at group homes wanted to bring their residents.
For some of these patients, the experience is too confusing or frightening, and they refuse to get in the chair or open their mouths. They may bite down on instruments. Other physical impairments make it difficult to be still or swallow.
In order to receive care, the patients need to be “put to sleep” with general anesthesia, which the dental center was not equipped to provide.
The only program the center could refer them to was at University Health Lakewood Medical Center, nearly four hours away in Kansas City.
McLeod did not want to continue turning patients away.
“We want the St. Louis Dental Center to be the home for all individuals who require treatment under our care,” he said.
So he approached leaders at Barnes-Jewish Hospital with the big ask.
It took more than three years to set up program. The COVID-19 pandemic stalled progress, but they remained committed, Martin said.
Barnes purchased the necessary dental equipment. The hospital, along with Washington University School of Medicine, also provides the nurses, anesthesiologist, radiologist, supplies, and lab and pharmacy services.
The dental faculty at A.T. Still established hospital privileges through a collaboration with the hospital’s ear, nose and throat department.
What got everyone across the hospital on board, Martin said, was the thought of patients being neglected for years, with a huge need and no place to go.
“Our position, quite frankly, was: If not us, then who?” Martin said. “Who else is going to be able to provide this care?”
80 on waiting list
McLeod said there are many reasons why most dentists do not provide care for those with disabilities, especially adults.
The patients may be difficult to manage because of their weight or large wheelchairs. They may be very vocal in the waiting area or cry out, scaring others.
It’s also more costly — with dentists able to see four or five patients in the time it takes to care for patient with disabilities.
“The majority of dentists out there are not competent, neither do they feel comfortable, neither is it a good return on investment or an economic benefit for them to treat individuals with intellectual or developmental disorders,” McLeod said.
For dentists’ offices that are able provide sedation, the staff often lacks the expertise to do so on high-risk patients, he said. Adults with intellectual or developmental disabilities tend to also have other co-morbidities such as hypertension, diabetes or heart or neurological conditions.
“It is better for these individuals to be managed in a hospital setting where they have the full scope of a medical team,” McLeod said.
The medical team often does not know the extent of care required until the patient is put to sleep and they are able to look into the mouth, he added. Sometimes the work may take three or four hours, which is why only a couple of patients are scheduled at a time.
Nearly 80 patients are waiting to be seen at the hospital, McLeod said, and the list grows by the week. The partners hope to add more days to the schedule and also create dental student rotations.
“I want all our graduates to feel very comfortable in treating these patients, and the only way to do that is to provide firsthand experience while they are in dental school,” he said.
Sallye said her daughter ended up having to have several teeth pulled and a dozen cavities filled. Cassandra was sedated for 3½ hours, she said.
When told that Cassandra was lucky to have her as a mother, Sallye said she was the lucky one.
“I’m glad to have her because it has opened my heart and my eyes to things I probably would’ve been blind to had I not had to deal with certain things,” she said, “and that’s good because then I can help other people to open their eyes and hearts to things that we sometimes take for granted and overlook.”
Michele Munz • 314-340-8263
@michelemunz on Twitter