When the novel coronavirus hit Texas, Mike Danks immediately began to worry about the possibility of an outbreak at the state-run home where his 31-year-old daughter, Sarah Danks, lives.
Sarah Danks, who has moderate to severe autism, functions at the level of a 6-year-old and requires medication every day to manage her behavioral issues, her father said. For six years, she has been a resident of the Denton State Supported Living Center, the largest of the 13 state homes for people with intellectual and developmental disabilities.
Mike Danks was right to be worried. Four cases were first reported March 21 at the home where his daughter lives and is cared for. By Wednesday, that number swelled to 50 residents and 47 staff members.
His daughter “doesn't really understand what's going on so much,” Danks said. “But we've explained to her that there's lots of sick people on her campus, and when everybody gets all better, then we'll be able to visit again.”
Across the state, about 3,000 Texans with intellectual and developmental disabilities — many of whom are medically fragile — share close quarters in dorm-style housing at state supported living centers. Depending on the severity of their disabilities, they may not understand rules about hand-washing or maintaining a safe distance from others. There are also 13,000 people employed at the centers, and most of them work closely with residents, tending to their medical care and assisting with intimate tasks such as bathing, getting dressed or brushing their teeth.
As nursing homes continue to emerge as hotbeds for COVID-19, the disease caused by the new coronavirus, officials and family members of residents at the state’s supported living centers are crying out for help, saying they also need more resources and staffing to protect some of the state’s most vulnerable people from spread.
After an initial crackdown on outside visitors, state officials say they're ramping up support by providing more testing across the state and additional personnel for facilities where the virus has been detected. But people close to the facilities have reported that the state is responding too slowly to the emergency.
“They [residents] may not have the understanding or capacity to know to wash their hands repeatedly, to use hand sanitizer, or when coughing or sneezing to use their elbow or shoulder to prevent the spread,” said Beth Mitchell, supervising attorney at Disability Rights Texas. “And then on top of that, they have all of the same underlying health conditions that everybody else does.”
In March, 445 Texans lived at the Denton facility, and 38% had moderate or severe health risks. While residents there range in age from 19 to 86, nearly one in four are over 65 years old. Across all 13 state-run homes, about 43% of the residents are medically fragile, according to a spokesperson for the Texas Health and Human Services Commission, which oversees the living centers.
Disability rights advocates say state supported living centers need enough kits to test all residents and staff immediately and enough personal protective equipment to prevent staff from carrying the virus into the facility.
“Those are the only ways that you ensure that you don't continue to get community spread — not waiting until you start to have some confirmed findings that you begin these tests,” Mitchell said. “It should be done ahead of time.”
But on March 31 — 10 days after the outbreak was reported — a Denton health official told county commissioners that 10 residents still hadn’t been tested, and due to limited tests, only the highest-risk staff members had been tested.
“There are so many employees left — at a lower risk — but still with some limited exposure,” said Matt Richardson, director of Denton County Public Health. “But we don’t have a thousand tests at Public Health, obviously, right now.”
On Monday, Denton County spokesperson Dawn Cobb said that “all but a handful” of residents had been tested and that “testing for staff members has been ongoing.”
A parent of a resident at the Richmond center in Fort Bend County told The Texas Tribune that the center did not start testing residents who shared a dorm with the infected patients until a week after officials announced that two residents tested positive.
“They were taking temperatures but not testing,” said the parent, who asked to remain anonymous, fearing their child would be penalized.
On March 30, the same day the cases were announced, Erin Knight, director of the Richmond home, told families in a letter that “[o]ut of an abundance of caution, Fort Bend County Health & Human Services is testing some residents for COVID-19, including residents who may not have been exposed to COVID-19.”
Knight did not respond to a request for comment for this story. But in her letter obtained by the Tribune, she said the facility was increasing cleaning and disinfecting.
“Staff who work with residents who test positive for COVID-19 wear masks, eye protection, gowns and gloves while providing care. We’re also asking staff members to monitor their own symptoms before leaving home to report to work,” she wrote. “In addition, we screen all staff daily for symptoms and take staff temperatures, before staff may report to their work area. If staff become symptomatic, they must leave campus immediately.”
Employees at Denton’s facility told The Dallas Morning News they lack appropriate personal protective equipment, and some said they have underlying conditions that make them more likely to contract the virus.
“This is detrimental to my health,” Denton employee Bukola Amodu wrote in her resignation letter dated March 27, according to the Morning News. “I am sorry for any inconvenience this might cause.”
Asked about the reports of lack of testing and safety equipment, HHSC spokesperson Christine Mann said this week that “at this time we have adequate supplies of PPE at our state supported living centers, including Richmond SSLC.”
“On any campus in which a resident tests positive for COVID-19, all staff on the campus wear face masks,” Mann said in a written statement. “Staff working in homes with COVID-19 positive residents are dedicated to those homes only, using the appropriate personal protective equipment and are following CDC [Centers for Disease Control and Prevention] guidelines to protect their safety and prevent spread.”
But testing is also a concern for employees at the centers where there are no reported cases.
An employee at the Austin home told the Tribune that aside from general precautions like limiting visitors and taking employees’ temperatures before each shift, the facility has not asked for additional resources or support. She worries that positive cases are not being reported.
“There’s not testing being done — there’s testing if you show signs, but it’s been just eerily quiet on that front,” said the employee, who asked to remain anonymous out of fear of losing her job.
Asked if there are any cases in the Austin home, a city spokesperson said officials “haven’t been providing detailed information about individual cases” but that “we are in a community spread with evidence of people being asymptomatic.”
“We all need to treat ourselves and others as if we already have the virus and take proactive personal measures to stop the spread,” Austin spokesperson Andy Tate said in a written statement.
On March 21, Texas had its first scare at a state supported living center when four Denton residents tested positive. Local officials soon called on Gov. Greg Abbott to build a temporary hospital on site. The “medical and intellectual fragility of these potential patients” requires a special degree of care that local hospitals could not handle while caring for other patients sick with COVID-19, they wrote in a letter to Abbott.
“The residents and 1,400 employees of the Facility are at great risk for a rapid devastating spread of COVID-19 throughout the campus,” Denton Mayor Chris Watts and Denton County Judge Andy Eads wrote. “In such an event, the local medical capacity could be quickly overwhelmed.”
With input from Abbott and health authorities, the temporary hospital idea was scrapped in favor of other support from the state, such as increased testing and additional personnel, Eads said in an interview.
“We’ve assessed a variety of methods to address this situation, and it was determined that having a standalone, temporary hospital on this on the site, which is what our first request was, may not be the best use of resources,” Eads said. “The more we talked about it and identified the available resources … a physical structure is part of the need, but actually the personnel and the staffing is a complete, separate issue.”
Abbott said he’s satisfied with the way the state has responded to outbreaks in Denton and in other long-term care facilities, like nursing homes.
“We want to elevate our surveillance and our assessment of those populations as well as our protection of those populations,” Abbott said of state supported living centers at a March 31 press conference. “As you may have observed, we have increased testing at some of these facilities, and we look to continue that because of the vulnerability.”
On Wednesday, he said officials were already seeing positive results.
“We were able to go in and make sure we provided all the needed testing, contain the problem, reduce the problem and prevent a situation like what occurred in Washington state,” Abbott said, referring to a nursing home that was tied to 40 COVID-19 deaths.
A day earlier, HHSC provided guidance to the state’s long-term care facilities, including state supported living centers, on how to respond to exposure to the new coronavirus.
Among the steps to be taken by facilities within 24 hours of exposure, HHSC recommends supplying personal protective equipment to staff, identifying health care workers’ outside activities, and reviewing or establishing a testing plan. After 24 hours, the agency recommends testing and continuing to screen patients.
Meanwhile, HHSC said it is immediately looking to hire “for hundreds of available positions, including psychiatrists, nurses, psychiatric nurse assistants, and direct care support staff,” at its state supported living centers and state hospitals.
In every community that the state-run homes are in, HHSC has been working with local hospitals and authorities to prevent the spread of the disease, Mann said. The agency is also working with state and federal authorities to ensure the facilities have the supplies they need. Residents who test positive will be isolated while receiving care, she said.
“SSLC staff have dedicated homes on campus for residents who test positive for COVID-19 and do not require hospitalization, and residents recovering from the virus, including any who have been discharged from a hospital,” Mann said.
On the Denton campus, HHSC is going a step further: It has stationed up to four ambulances to provide transportation for residents who require hospitalization due to COVID-19.
Asked if the agency is implementing similar measures at centers without any known cases, Mann said that “as circumstances require, we will quickly move resources to meet our needs both systemwide and at individual facilities to enable us to respond should any outbreaks occur.”
Some officials in communities where the facilities have yet to report positive cases, such as San Antonio, say they are confident in the state’s approach. Others, such as those in San Angelo, say they are working to secure supplies ahead of time.
With the centers clamping down on outside visitors, Mike Danks and his wife haven't been allowed to see their daughter in weeks, though they have spoken over the phone and FaceTime. “It’s certainly tough on both ends,” he said.
Despite the virus currently making its way through his daughter’s home, Danks said he thinks the steps that officials and the Denton facility have taken so far are “very appropriate.” Recently, he and his wife dropped off pizza from their daughter’s favorite local joint for her and the other residents in her dorm.
“We formed a relationship over the years that she's been there with … the staff that work with her, and we trust those people,” Danks said. “They’re certainly trying to do the very best job that they can.”
Ren Larson contributed to this story.
The Texas Tribune provided this story.