AUSTIN, Texas — Residents at the Denton State Supported Living Center rose on the morning of March 20, aided by caregivers who helped them bathe, brush their teeth and eat breakfast. Employees fanned out across the sweeping Texas campus for individuals with intellectual and developmental disabilities as many residents headed to their morning group activities, like any normal day.

But it wasn’t a normal day.

Unbeknownst to nearly all of the facility’s 443 residents and 1,460 employees, someone on campus had tested positive for COVID-19 the night before. Administrators told only the staff in the home where that individual lived. They waited until 2:18 p.m. the next day to notify the rest of the campus about the positive case.

By then, the virus was moving. Within a week, 41 people at the Denton facility had tested positive. As of Friday night, that number had swelled to 50 residents and 25 employees.

“It’s spreading fast,” said Francisco Santillan, who worked at the facility until earlier this year and is now an organizer with the Texas State Employees Union. “And I feel like the administration has dropped the ball.”

The outbreak has become a crisis on a campus where many residents have pre-existing medical conditions and are considered at high risk if they contract the coronavirus. There are similar facilities across the country where large groups of vulnerable adults live in close proximity to one another and social distancing is impossible due to the level of care needed. In Missouri, three residents at a state-run home for people with developmental disabilities tested positive for the virus last week. In New Hampshire, one resident has died and five others are infected at a similar nonprofit group home. In Texas, four hours south of Denton, two residents at another state-run living center tested positive last week.

The Denton center, located about 40 miles north of Dallas, is a case study for how the coronavirus can quickly overwhelm a facility not set up to handle a pandemic. Local Denton officials have criticized the center’s response, saying administrators there did not appear to have a plan.

Staff at the facility say they are concerned about having enough personal protective equipment, fearful of being fired if they won’t work with residents who are quarantined, and outraged over not being immediately told a resident had tested positive. Administrators downplayed the danger, employees said, pointing to an email sent to staff hours before the first case was confirmed that scolded those who spread a “rumor” about a resident testing positive.

One employee, 37-year-old Bukola Amodu, said she felt pressured to resign on March 27 when she told a manager that she did not want to work with COVID-19 positive patients because she has diabetes, which makes her susceptible to developing complications if she contracts the virus.

“I said, ‘But my health is at stake.’ He said in that case I have to resign,” she said.

Amodu said she was given a few minutes to think about her options. When her manager came back with a piece of lined paper, she said she wrote out a resignation letter, which she shared with USA Today. She hasn’t been back.

Nancy Condon, the center’s director, did not respond to requests for comment.

Christine Mann, a spokeswoman for the Texas Health and Human Services Commission, said Amodu was not “in any way prompted or asked to resign,” and that the facility is making accommodations for staff with underlying health conditions. She said the facility began taking precautions weeks before the first case was confirmed and acted to contain the virus by quarantining those who are sick and supplying staff protective equipment recommended by the Centers for Disease Control and Prevention. The facility has had enough protective equipment since the start of the outbreak, she said.

Of the 50 residents who had contracted the virus as of Friday, nine had been hospitalized and none had died, according to the county health department.

“Our commitment to residents and their families is to provide the best care possible, at all times under any circumstances,” Mann said in a statement. “Our commitment to staff is to provide the safest possible working environment, at all times under any circumstances. This is a rapidly evolving situation and we are adapting our policies and procedures as necessary.”

Rich Parsons, the health commission’s director of communications, said administrators moved “as quickly as they could” to cancel group activities and inform employees after the first case was confirmed. Mann said group activities were canceled on March 20 but declined to say what time.

Charlene Harrington, professor emeritus at the University of California San Francisco School of Nursing, expressed concern at the delay between when the virus was first confirmed and when all of the employees at the Denton facility were notified. Ideally, she said, the center should have acted as quickly as possible to try to interrupt further spread of the virus. By the time the first case was discovered, people in other parts of the campus had likely already been exposed, she said.

“The damage was done,” Harrington said. “The gap between overnight and the afternoon — I don’t think they should have done that. They should have acted sooner.”

The delay by officials has opened up the facility and Texas health officials to questions about whether they could have done more to protect the vulnerable population. The state’s 13 centers for individuals with developmental disabilities have faced criticism before and have been under the watch of government-appointed monitors since at least 2010, after facing accusations of providing substandard care.

USA Today spoke with half a dozen people whose loved ones live at the Denton facility. Though some have been frustrated by what they see as poor communication by the facility, most were reluctant to criticize a place they say has been deeply beneficial for their family members.

Deb Cates said her son Michael Jameson’s life was transformed by Denton. Prior to moving to the facility, the 32-year-old man lived in a group home where he lashed out at staff. Now, he loves his job sorting hangers and enjoys friendships with other residents.

“While I’m fearful and worried,” Cates said, “I have confidence in their Denton staff.”

‘It’s a scary situation’

The 189-acre campus in Denton is bordered by tall trees and a pond. The perimeter is marked by a stone fence and guardhouse where drivers on Sunday stopped to have their temperatures checked before entry.

With 443 residents, the Denton facility is the largest of Texas’ 13 state-run centers for people with intellectual and developmental disabilities. Oftentimes, residents are civilly committed by family members or guardians who believe their loved one cannot be adequately cared for in another setting. The state facility provides 24-hour residential care, medical services and vocational training.

The Denton center has the feel of a small town. Residents eat in a canteen, ride their bikes on private roads or participate in choirs and other activities. They live alongside fellow residents in small homes supervised by staff. About one-third of residents have on-campus jobs such as sorting hangers, recycling or making ceramics and jewelry.

Texas officials have long faced criticism over their operation of the centers. Since at least 2010, the facilities have been under the watch of independent monitors after a U.S. Department of Justice investigation found systemic problems in all 13 facilities, including a failure to provide adequate health care and to protect residents from harm. From 2004 to 2008, more than 800 living center employees had been suspended or fired for abuse, neglect or exploitation, according to a letter from the DOJ to then-Gov. Rick Perry.

The 2009 settlement was expected to be enforced for five years, or until the state was in substantial compliance with every provision. Nearly 11 years later, that settlement is still in effect.

The state has improved in multiple categories, but problems persist in areas that are especially concerning as Texas officials battle the spread of the virus. The latest monitoring report on the Denton center, published in April 2019, found ongoing problems related to residents’ medical care.

The investigators found that for individuals with chronic or at-risk conditions, primary care providers were in some cases failing to conduct medical assessments consistent with best practices and had not appropriately identified necessary treatments and interventions. Nursing assessments at the first sign of illness were identified as an area “on which the Center needs to focus.”

Annessa Lewis, executive director of Texas Advocates, said the history of problems at the living centers makes her worried about what is happening there today, because agencies that typically visit residents at the facility are no longer able to do so.

“It’s a scary situation because these people were already pretty isolated from the community,” Lewis said. “And now because they have to be isolated because of the virus, they have even fewer people looking in on them. You know, I think this kind of leaves them vulnerable to even more than just COVID-19, unfortunately.”

Denton facility’s first COVID-19 case

Mann said the Denton center started screening staff, contractors and visitors on March 5 for illness or travel that could have exposed them to the coronavirus. The following week, the Denton facility restricted visitors and prohibited residents from participating in home visits or off-campus activities. And on March 16, the facility began checking people’s temperatures before they entered campus.

Three days later, Denton County Public Health confirmed the first case of COVID-19 at the facility.

Multiple city officials told USA Today they were frustrated that a clear plan did not come from the facility or state until more than a week later.

City officials immediately quarantined the first responders who had transported residents to the hospital but worried about how city employees, local hospitals and the broader community would be affected if the virus continued to spread on the campus. City spokesman Ryan Adams said officials were troubled by what they heard from the facility’s leadership during a conference call held March 23.

“They did not appear to have a plan,” Adams said. “We had concerns about how they were deploying protective equipment. And after that meeting is when we decided to go directly to the governor and the state.”

The next day, city officials sent a letter to Texas Gov. Greg Abbott, asking the state to set up a temporary hospital on the grounds of the Denton State Supported Living Center.

A meeting was held that night with city officials, the director of the Denton facility and state emergency management officials. By that time, five more residents on campus had tested positive for COVID-19.

“It would’ve been nice to have them at the table a little bit sooner and being a little more open with information,” City Manager Todd Hileman said, “because it did lead to a lot of hand-wringing on our end not knowing what was going on.”

The proposal to put a hospital on campus generated immediate criticism from advocates, who said it would lead to substandard care.

“It’s really kind of just plain discrimination to say we’re just going to keep them on the campus because we don’t want them taking up our emergency room beds,” said Beth Mitchell, supervising attorney at Disability Rights Texas, the state’s federally designated legal protection and advocacy agency. She said facility residents deserve the same medical treatment that any other individual would receive.

The state declined to set up an on-campus hospital. Instead, Mann said the state health commission has stationed four ambulances at the facility and coordinated with regional hospitals for residents who may need hospitalization related to COVID-19 so hospitals don’t run out of capacity.

City, county and state officials have set up a “unified command” that meets daily to discuss developments.

Mann declined to comment on the city’s frustration with the early delay and pointed out that city and county officials praised the state’s efforts at a March 27 news conference. Speaking at the event, held a week after the first case was confirmed, Mayor Chris Watts said the state had “moved mountains in helping the residents out at the state supported living center.”

‘We are not trained’

Within the center, employees say they are also frustrated by what they see as the state’s slow response to the virus. Santillan, the union organizer, said many were upset by the March 19 email calling out a “rumor” on campus, sent hours before the first resident tested positive.

“There is another rumor going around campus and it is just making a lot of people more stressed and scared,” Maria Palenzuela, the facility’s infection preventionist, wrote to staff, emphasizing the point in bold. “Currently, we do not have any resident or staff confirmed with Covid-19.”

She promised staff would be notified “as soon as” there was an update from the county health department. That evening, a case was confirmed. Palenzuela didn’t tell the campus until the following afternoon.

Santillan said he has been overwhelmed by calls from employees who are scared to go to work. At least half a dozen workers have quit or threatened to quit, he said.

“We are not trained as state employees to take care of this type of infection,” he said. “And it’s like being thrown to the wolves without having proper attire, face shields, face masks, gowns and stuff to deal with this type of issue.”

Santillan warned that “if this continues to get worse, staff are going to walk out of fear.”

Employees say they have been directed not to speak with the media, both by managers and through email. Three employees, who spoke with USA Today on the condition that they not be named out of fear they would be retaliated against, described shortages of personal protective equipment, and two said they had been told to reuse masks and gowns. One said she was told to wear a gown, then flip it inside out and wear it again the following shift. Another said his biggest fear about contracting the virus is that he will unknowingly spread it to healthy residents.

“I do care for them. I don’t want to spread it,” he said. “I don’t know whether I’m already a carrier.”

Mann, the state spokeswoman, disputed that there has ever been a lack of personal protective equipment at the center and said it is not the facility’s policy to reuse those materials. She said staff working with sick residents or those who may have been exposed to the virus are being given gear that meets CDC guidelines, including N95 masks. Staff not working with those residents are using surgical face masks and gloves, she said.

The facility has quarantined patients who have tested positive and assigned staff to work only in those areas, Mann said. She said there are procedures in place to prohibit staff from moving among healthy and sick patients. She declined to say how many staff had been tested for COVID-19.

At a county commissioners meeting last Tuesday, county health director Matt Richardson said nearly all residents had been tested but that there are not enough tests available for all employees, so they are focusing on those considered at high-risk.

As for staff fearful of working with patients with COVID-19, Mann said administrators are making “reasonable accommodations” — especially for those with health conditions who are at high risk, including assigning them to units without residents who have tested positive.

But an email obtained by USA Today shows a high-ranking Denton administrator last Tuesday told managers that employees refusing to work where asked would be given a written warning for insubordination and that staff who tried to resign would “never be rehired.”

“Their names will be submitted to my director as soon as they leave,” he wrote. “Please make sure your staff are aware (of) these actions.”

Asked about the email, Parsons would only say that the facility would “reiterate” its policy to supervisors.

Families fearful, but supportive

Stephanie Kirby has watched her son, Petre Kirby, pass milestones she was told he never would reach. Adopted from a Romanian orphanage where he was starved and left in a crib, Petre, now 27, took his first steps at age 6 and said his first word at 10.

But about three years ago, Kirby found herself unable to care for Petre, who had started to hurt himself and needed someone at his side at all times. She said she exhausted every option to keep him home before deciding he should move into the Denton center. Today, Kirby considers the staff there to be family and said she is deeply supportive of the centers and their mission.

“It’s not home. It will never be home,” Kirby said. “But it is the safest place for him at this time.”

She typically visits her son several times a week, so being unable to see him since the facility was closed to visitors has been painful. While she trusts his caregivers, she worries he will feel abandoned or that not seeing her will trigger his depression and post-traumatic stress disorder.

Making matters worse, she said, administrators at the facility have been slow to provide information. At first they were sending updates in the mail, the details days old by the time the letter arrived, she said. Kirby requested the updates be sent electronically. She said she also had to press the facility to learn that Petre’s COVID-19 test came back negative after initially being told families would only be told of positive results. (Mann said this is not the facility’s policy.)

Kirby said communication has improved in recent days. She is unsure why but said other families, like her, have voiced frustrations. She was recently told employees who have been exposed to sick residents are being tested, information she has sought for weeks.

“There’s still more questions,” she said. “But at least now people are calling me and emailing me, versus me trying to email so many people and being referred to another person or another person.”

Kirby and other parents say they worry that what is happening will inflame tensions over the future of the Denton center and the state’s other facilities.

For decades, family members and disability rights advocates have been locked in a bitter feud over whether the state centers are the best option. Advocates have taken the stance that people with disabilities, when provided with the right supports, fare better living in the community than institutions. Some legislators see the living centers as a financial drain, and have said home-based services could provide better care for less tax dollars.

But families of residents have pushed back, saying that what advocates see as institutions of isolation are actually bastions of safety where residents can walk along the streets and wander the vast campuses under supervision. Of the half dozen families USA TODAY spoke to, all stood behind the center and worried the pandemic would become ammunition in future fights over the facilities.

“Anything to do with the living center if they can get mileage out of it, they’re going to use it, which is reprehensible,” said center supporter Debra Wallace, whose son, Justin, moved into the Austin State Supported Living Center two decades ago.

Stephen Gersuk said he is grateful for the life the Denton facility has offered his son.

Before moving to the center in 2001, Gersuk’s son, also named Stephen, was abused at a group home. Now he has friends and a community devoted to him, Gersuk said. Though he worries about his son being at risk of catching COVID-19, Gersuk trusts the facility is doing what it can and thinks Denton is the best place for him.

“If being at higher risk comes with my son having a life, I’d choose that in a heartbeat,” Gersuk said. “Who wouldn’t? Who wouldn’t take a little risk for a life?”

© 2020 Austin American-Statesman, Texas
Distributed by Tribune Content Agency, LLC

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