As Institution Becomes Coronavirus Hot Spot, Families Struggle With Separation
DENTON, Texas — When Debbie Waddy Cates FaceTimes with her 32-year-old son, Michael Jameson, she tries to explain the state of his world in a way that will make sense to him.
Jameson, who’s nonverbal but can communicate through limited sign language, lives in the Denton State Supported Living Center, a home for people with developmental and intellectual disabilities that contains the largest cluster of coronavirus cases in Texas, with 45 residents testing positive as of Sunday.
Friendly contact is normally a big part of life here — residents high-five and hug each other, and congregate at campus hangouts. But Cates, 57, of Fort Worth, tells her son it can’t be that way for a little while.
Advertisement - Continue Reading Below
She will ask him, almost every time they talk over FaceTime, to think about his little niece, one of his close friends.
The 7-year-old came down with a nasty case of the flu back in December. It got so bad she had to go to the hospital.
“We’ve been able to give him a perspective and say, ‘Remember how Lucy was so sick?'” Cates told the Star-Telegram over the phone on Saturday. “‘This virus can make people that sick, too. And so in order to keep people from getting the virus, we have to stay in our homes.’ We just keep reminding him of that.”
The sprawling State Supported Living Center in Denton has been in a state of lockdown since cases first emerged more than a week ago, with no visitors allowed and the 440-plus residents ordered to stay on campus. Cates has been informed by her son’s caregivers of the expectation for the weeks ahead: The outbreak, she said, is poised to peak in the second week of April, “hitting very high numbers.” Several people could require hospitalization.
Cates expects it might not be until mid-May that she could see him again. “The separation is hard — just not being able to give him a hug,” she said.
Mike and Karen Danks, of Corinth, said they miss taking out their 31-year-old daughter, Sarah Danks, to her favorite Italian restaurant, and have had a hard time explaining to her why they can’t. She’s on the moderate-to-severe spectrum of autism, behaving more like a child than an adult, Mike and Karen said.
“Her big thing is she likes to go out to dinner and likes to shop. And it’s hard to explain to her that we can’t do that right now,” Mike Danks said. “We just tell her, ‘It’s because there’s a lot of sick people,’ and we ask her to pray for the sick people.”
Life is changing dramatically all over America as residents are ordered to stay home to slow the spread of COVID-19. But inside the Denton State Supported Living Center, changing social behavior is a bigger challenge, with a population of vulnerable residents who have a harder time understanding the implications of seemingly harmless actions like a handshake.
Officials acknowledged the seriousness of the situation on Friday, as Denton County confirmed 31 more cases among residents at the living center and the state announced sweeping new measures like the dedication of on-campus homes to COVID-19 patients.
In addition to the 45 residents diagnosed with the illness, seven DSSLC staff members who tested positive and live within Denton County were reflected in the county’s total case count of 165 as of Sunday, according to Denton County Public Health. Two additional center employees who tested positive reside outside Denton County and are not reflected in the county’s numbers.
Parents who spoke with the Star-Telegram over the weekend expressed their concern about the situation but their belief in the county and the state.
“We believe that they’re taking it very seriously,” Mike Danks said. “Most of our leaders in this community understand that … they’re a population that are very special, and they’re part of our community. And we’re gonna care for them.”
Testing has begun ramping up at the site, with hundreds of tests already administered, officials have said. Both Jameson and Sarah Danks had their tests on Saturday, a simple swab of their nostrils.
Life at the living center, which looks more like a college campus, has changed in big ways: Events, including Sunday church services and parties, are canceled. Residents aren’t reporting to their jobs on campus. Popular spots like The Wooden Nickel, a soda and snack shop, are no longer open.
But it hasn’t been all bleak.
Cates coordinated with her friend who’s a caterer to drop off pre-made bowls of ice cream on Sunday along with sealed bags of toppings. The staff will pick up the items and distribute them to Jameson and others to make sundaes.
Mike and Karen Danks have been ordering pizzas to the campus as well as delivering several 12-packs of soda, since The Wooden Nickel is closed.
“That was kind of a gathering place,” Mike said. “But that’s what they’ve got to do.”
A vulnerable population
As president of the Denton State Supported Living Center’s Family Association, Mike Danks leads a meeting every other month and — along with his wife — keeps up with the roughly 150 members. The pair are the “social conduits” of the group, the outlets for problems or concerns, Mike said.
Much of what they’ve been hearing since the coronavirus hit the living center has been a feeling of helplessness.
Family members, separated from their loved ones, are frustrated they can’t get onto campus to see them, Mike said. They wonder, he said, “Is there anything I can do?”
“And I try to explain to them that, ‘Look, they’re in good hands. Work with the people that are there. We certainly can’t get in there now,'” he said. “They were concerned and caring, but you’ve gotta temper that with the fact that there’s the rest of the world out here that has an impact on.”
Cates, a nurse at Medical City Lewisville, said she has been kept up to date of the evolving situation on campus by Jameson’s caregivers. All residents are assigned specialized direct care workers who live with them in on-campus buildings and assist in their day-to-day lives.
Her son has been doing better than she had expected, in part because staff have kept him busy with arts and crafts assignments or exercises he can do inside his apartment, she said. Caregivers have been occasionally taking residents outside one at a time for short walks. They try to harp on the importance of social distance.
The people living on campus are having to change behaviors in what is normally a community built on touch, Cates said.
Jameson, though he can get himself dressed, might need someone to tie one of his shoes, or make sure he’s wearing a belt, she said. He needs help shaving.
“We’re talking about a population that is very high-touch, and you’re also talking about a population that doesn’t fully understand not touching other people and keeping your space,” she said. “So the staff are really tasked with ensuring that they have appropriate (personal protective equipment) on — that they’re using gloves and everything.”
Born with hypotonia facies syndrome, Jameson has trouble communicating and understanding the world, and also has behavioral issues. He was able to attend Fort Worth public schools in a special education program. Cates wanted him to live in a community group home as an adult so he could stay close.
But for 15 years, he bounced from home to home. He had trouble making friends, Cates said, and on one occasion even came down with pneumonia because caregivers “failed to seek medical treatment.” That group home was shut down.
In December 2018, Cates got him placed at the Denton State Supported Living Center.
She knew it was the right move after she attended a meeting on campus with Jameson one day.
“He gave me a kiss and he walked off. And, as I was backing up, I looked in my rearview mirror and Michael was standing on the corner across the street from me, and he was just talking to somebody,” she said. “And having a friend experience that wasn’t created by me.”
Mike and Karen Danks said they had tried to put Sarah into several private care facilities before they turned to the Denton State Supported Living Center about six years ago. In one of her previous homes, Karen said, Sarah had been prescribed medication for her behavioral issues and gained 150 pounds — weight she has since lost. “It no longer exists,” Karen said of the facility.
She and Mike, like Cates, think of the living center more as a school, and will refer to it that way.
They said they have put their faith in the employees.
“The people that are working there are doing their absolute best to keep us and everyone informed,” Mike said. “And as far as we’re concerned, they’re all doing God’s work there.”
Showing support, from a distance
Mike, Karen and two of their friends stood across the street from the living center on Saturday afternoon, standing a safe 6 feet apart and wearing blue plastic gloves as they held up posterboards.
“Thank you, DSSLC staff!” the signs read.
One also said: “We appreciate your devotion.”
The more than 1,400 caregivers and employees who take care of residents are isolated on campus with them, riding out the outbreak that has become a focus of the fight to stop the spread of COVID-19 in Texas.
The small group with signs arrived on Saturday afternoon during a shift change to ensure they would see as many people as possible. Passing cars honked. People walking by waved.
An employee came outside to inform them, though everyone loved and appreciated the sentiment, they were afraid the group might cause a traffic jam at the busy intersection, Mike and Karen said.
The woman told them, however, they wanted the posters so they could post them in the windows.
And she took photos of the group even as she was asking them to leave.
“We know how hard it’s been on both the people that are residents and the staff,” Mike said.
© 2020 Fort Worth Star-Telegram
Distributed by Tribune Content Agency, LLC
Read more stories like this one. Sign up for Disability Scoop's free email newsletter to get the latest developmental disability news sent straight to your inbox.