As elderly and vulnerable citizens continue to die from COVID-19 in closed-off long-term care centers around the country, many of their relatives have begged elected leaders to release the locations of these outbreaks.
Their pleas have carried weight with governors in Georgia, New York, Oklahoma and Florida, among others, who mandated an accounting of where the virus had spread.
Not in Texas. Despite more than 300 deaths in such facilities, Gov. Greg Abbott has not moved to make public where patients and caretakers have fallen ill or died.
The state’s expansive medical privacy law has made Texas among the most opaque for releasing information about the spread of the coronavirus, even as deaths in these facilities surged nationwide. More than 10,300 elderly people in 23 states have died in long-term care centers, according to the most recent available government data analyzed by the Kaiser Family Foundation, a national health policy think tank.
Passed in 2001, the Texas Medical Records Privacy Act expanded dramatically on federal protections of patient health care information. State officials say the law constrains the release of most such details.
As a result, family members say their ability to make crucial decisions about the care of vulnerable loved ones, or even to grasp what was unfolding in the locked-down centers where relatives lived, has been stymied.
Often, they learned of problems only after a family member fell seriously ill or died from COVID-19.
Estela Aguirre, 91, died last month from the disease after becoming sick in a College Station assisted living facility that was home to one of the worst known outbreaks in Texas. The experience has turned her son, Art, into a forceful advocate for families’ rights.
“Too many people are blocking families from knowing what’s going on,” said Art Aguirre, 68, a retired banker in Michigan. “When people may have had a chance to make alternate arrangements for their relatives, they were denied that opportunity because facilities were withholding crucial information.”
Texas’ behind-the-curtain approach stands in sharp contrast to many states. New York, where more than 3,650 elderly care residents have died, this month published the names of facilities with more than five deaths. Georgia released comprehensive daily reports, including the number of infected residents and staff members and deaths at each facility. Florida Gov. Ron DeSantis reversed his state’s policy two weeks ago, ordering the surgeon general to list names of such places with cases.
In Texas, more than 40% of the state’s coronavirus deaths are linked to long-term care facilities, according to an analysis of government data, yet health authorities have refused to name sites with known cases or even reveal the total number of infections across all centers.
A patchwork of public health responses across the state emerged as a result, with counties and long-term care facilities making their own decisions on how to publicize such information, whether to notify families and what to disclose.
“Depending on where you live, you will see a different response,” said Patty Ducayet, the state’s federally mandated long-term care ombudsman since 2007.
Case in point, families said, is The Waterford at College Station, 95 miles northwest of Houston. Aguirre’s mother, Estela, a homemaker and artist, was the second resident there last month to die from the disease in about 24 hours. As deaths mounted by the day, panicked relatives battled to decipher what was happening.
“We would ask them: ‘How many people in the facility are infected? Some or a few?’” Aguirre said. “People wanted an idea of how widespread the infection is.”
He and other family members said that administrators from the facility, owned by the publicly traded Capital Senior Living in Dallas, told them that federal and state law limited the release of private medical information.
“We’re not asking for names,” Aguirre said. “We’re just asking for numbers.”
A company spokeswoman said the facility quickly implemented an emergency response plan, including strict sanitizing measures according to federal guidelines, after the first cases and released as much information as fast as it could.
“Our top priority is always the safety and wellbeing of our residents and employees,” the spokeswoman, Susan Turkell, said in a statement. “The Waterford has always had strict protocols in place to limit the spread of infectious disease in our community.”
The Texas Health and Human Services Commission, which oversees the industry, cited not just the 1996 federal privacy law known as HIPAA but the state version, broadened in 2011, that legal experts called one of the most restrictive in the country.
So far, the agency has only released to reporters an emailed number of long-term care facilities with confirmed cases and a total of resident deaths. That data is not posted anywhere publicly.
As of Monday, 282 nursing homes and 85 assisted living facilities in Texas had one or more residents or staff members who tested positive for the virus. There are about 1,200 nursing homes and 2,000 assisted living facilities in the state.
By Wednesday, the commission reported 242 resident deaths in nursing homes and 61 such fatalities in assisted living facilities.
Which centers, and where are they? The health commission argues it does not have to say.
Pat Souter, a lawyer who represents health care institutions and oversees health care studies at Baylor University’s law school, said Texas entities were correctly following state law by not releasing detailed information. Other states providing such details “may not have the same level of protections,” he said, “or determined that such release was permissible under an exception to their laws.”
Federal privacy law only creates minimum standards, agreed I. Glenn Cohen, who directs Harvard University’s Center for Health Law Policy, Biotechnology and Bioethics. But he said best practices encourage transparency during public health emergencies.
The Freedom of Information Foundation of Texas wrote to state officials Wednesday that they had wrongly interpreted state law, saying the health commission had taken “a position without legal precedent.”
Advocates, families and more than 60 state lawmakers, including members of both parties, also urged Abbott to identify facilities and their number of cases, overruling privacy laws in the public interest during a national health crisis.
Abbott, via his spokesman John Wittman, did not respond to emailed questions.
Kelli Weldon, a spokeswoman for the state health commission, said the agency was working to release “all of the information we are legally permitted.”
New guidelines announced this month will require nursing homes, which are funded by public insurance programs and regulated by the federal government, to inform residents and their families within 12 hours of a COVID-19 case, as well as notify the Centers for Disease Control and Prevention. U.S. health administrators have not said when that will take effect. The rules also would not apply to assisted living centers such as the one in College Station, which are paid for privately and overseen by the state.
Proponents across the country said providing details about facilities with outbreaks is crucial for the public.
“For families and residents on an individual basis to make decisions on placement in nursing homes, or for state and federal legislators to know what’s going on in their districts, this is really essential,” said Richard Mollot, a national advocate who heads the Long Term Care Community Coalition in New York.
Estela Aguirre had Parkinson’s disease and used a walker, but she was otherwise in good health when her family moved her in February into Waterford, a place she’d come to love after taking watercolor classes there.
The facility assured relatives it had sealed off the premises in mid-March and was following federal regulations for COVID-19, including requiring employees to take their temperature before entering and mandating protective equipment.
On March 22, staff told Art Aguirre’s family that their mother had a high fever. Then the facility sent an email to relatives, saying there had been a “24-48 (hour) stomach bug,” and it was restricting residents to their rooms. No one had displayed “any symptoms” of COVID-19, an administrator wrote.
On March 26, Aguirre’s mother was suddenly checked into the hospital after her temperature spiked again. She was one of three residents hospitalized within days.
Administrators disclosed one known infection in phone calls to families, but assured them in an email that there were no “additional signs of the COVID-19 in any other residents or staff.”
On March 28, the hospital called Aguirre’s family to say their mother had tested positive for the coronavirus. Within hours, she was dead — the second COVID-19 fatality linked to the facility that day.
Two days later, Waterford’s executive director wrote to families to address “the recent media coverage” and “rumors floating around.”
She confirmed — for the first time — that there had been more than one case and that some employees and residents had tested positive. Although facilities are required to report such information to local and state health authorities, the administrator did not tell families how many residents had died or how many in the center had tested positive.
Neither did the Brazos County Health Department, which released overall county cases but said in a statement that it could not disclose names of facilities, specific locations, “or any other information that would or could directly identify a person.”
Frantic relatives turned to Facebook and group texts, scouring media reports and obituaries for details.
“Obviously they can’t release names,” Cathy Lester, a nurse whose mother is in the facility, wrote in a group chat. “We’re not asking for that. Just statistics.”
Two weeks later, on April 9 — after many pleas to Waterford’s administrators and at least one complaint filed with the state — the facility finally disclosed the ongoing toll to some families: Seven residents had died, and 13 of 31 staffers were infected.
“It’s ridiculous that it took so long,” Lester said.
The deaths have since climbed to 11 residents. Of 47, 32 tested positive, though some have since recovered.
Brazos County’s top executive, County Judge Duane Peters, said he doesn’t think the health district could have released more information without violating state privacy rules.
“If the governor or someone higher up says release the information and we give you the authority to do it, the health district would be doing it,” Peters said. “If it was my family member in there, I would want to know.”
The lack of transparency was an obstacle even for families in the state’s largest cities.
Cissy Sanders, 51, an events manager, struggled for weeks to learn about the outbreak at the Riverside Nursing and Rehabilitation Center in Austin, where her 70-year-old mother lives.
Regency Integrated Health Services, which owns the home, has said there are cases in five of its Texas facilities but declined to specify numbers.
“We remain committed to supporting all efforts to provide the best possible care for our residents and staff,” a company spokeswoman, Brooke Ladner, said in a statement.
Austin’s public health medical director, Dr. Mark Escott, said state law prohibited him from releasing names of sites with confirmed cases. The city has had outbreaks in at least 13 such facilities, with some 200 residents and 90 staff members testing positive. At least 26 residents and one employee have died.
Sanders feared for her mother, a longtime smoker with dementia who was diagnosed five years ago with breast cancer. She wanted everyone in the facility tested. At the time, Austin’s public health department would swab only those showing symptoms.
“If the most high-risk population on the planet cannot be tested, then who are the tests being saved for?” Sanders asked.
After a week of calls and emails, a state official finally assured Sanders the entire staff would be tested. Her mother, negative for the virus, has since been moved to a different wing because her old area is used for infected residents.
Sanders is still seeking answers. How many residents and staff members tested positive? Are employees working at other facilities? That’s a concern to many relatives and advocates, because staffers working in multiple places is one way the virus spreads.
Ladner, the spokeswoman for the nursing home company, said in an emailed statement that it did not know of any Riverside employees working at other facilities.
Neither Travis County, which includes Austin, or Brazos County, encompassing College Station, prohibited long-term care employees from working at multiple facilities. Doing so, officials worried, would lead to a worker shortage.
Escott, Austin’s health department executive, said staff moving among facilities had been “a factor” in some outbreaks. But, he said, “honestly, there’s some concern that if we completely restrict the ability to work at multiple facilities, we will not have enough staff.”
Large outbreaks did prompt some Texas authorities to take action.
On April 3, days after escalating cases at a nursing home in Texas City, south of Houston, Galveston County’s local health district started requiring long-term care facilities to immediately notify staff and residents when anyone tested positive and inform relatives as “expeditiously as possible.” Staff could not work at other facilities. Notices were posted on building exteriors within two hours of a positive test.
Citing the state’s privacy laws, the county’s legal staff advised the health agency that it could not publicly release cases at most facilities. Instead, the authority identified only four centers, including the Resort at Texas City, each the site of a “large cluster,” a number the agency did not define.
The county’s order was far more rigorous than guidance issued by most in the state.
“We were pushing the envelope a little bit, but we felt like we had to,” said Dr. Philip Keiser, the county’s health chief and an infectious disease specialist. “The situation was too critical.”
Within days of the outbreak, the health district tested more than 140 staff members and residents at the Resort. More than 83 were positive — a “shocking number,” Keiser said.
The agency quickly compiled a list of facilities that shared staff with the Resort and ordered testing at those places, too.
Keiser had an enormous advantage over his colleagues across the state: The University of Texas Medical Branch at Galveston, where he taught, designed its own test, allowing the county to ramp up swabs and analyses to dozens a day. Now, it is up to 1,000 daily, giving the county one of the highest per capita testing rates in the country.
San Antonio, the state’s second-largest city, tried to be proactive before anyone had tested positive, said Dr. Junda Woo, its health department medical director. The fire department started tracking 911 calls from nursing homes, which is how the city noticed an uptick at Southeast Nursing and Rehabilitation Center, the site of San Antonio’s biggest cluster.
Even with that effort, families sometimes remained the last to know.
Keitha Scott received a call on March 26 that her mother, a Southeast resident, was transferred to a different hall. COVID-19 was never mentioned. Scott first heard about cases the next day on the local news. Two days later, the facility called to say her mother was being transported to the hospital with “respiratory distress.”
Scott asked the nurse on the phone if her mother, in her mid-60s, had the virus. The nurse put her on hold for 15 minutes, and Scott eventually hung up.
A hospital doctor finally confirmed that her mother, who has quadriplegia, had contracted the disease.
“My heart just fell,” said Scott, a former certified nursing assistant at Southeast. Her mother is recovering.
A spokesperson for Advanced Healthcare Solutions, an Arlington company that owns Southeast and at least 43 nursing facilities in Texas, said in a statement that Southeast received positive test results for a resident and staffer one day before Scott’s mother was moved to another hall. Citing privacy laws, Southeast declined to discuss her case but said all residents “and/or their authorized family representatives” were notified the day after the outbreak about those initial infections.
On March 31, San Antonio issued an order prohibiting staff from working across long-term care facilities, acknowledging the cluster at Southeast the following day. To date, 74 residents and 29 employees have contracted the virus, and at least 18 residents have died.
Defending its handling of the crisis, the facility said it hasn’t confirmed a case since April 2.
“The virus didn’t start in a nursing facility,” Southeast’s medical director, Dr. J.H. Higuchi, said in a statement. “It began overseas, and then this evil virus raced through buildings that are normally secured against such a threat.”
In October, Southeast received an overall one-star grade from the Center for Medicare and Medicaid Services rating system, a score considered “much below average.” Inspectors found 17 health-related deficiencies in 2019, including improper bagging of a patient’s oxygen mask and tubing, which could place the resident “at-risk for respiratory infections,” the report said.
A Southeast spokesperson, Lisa LeMaster, said in a statement that nursing and care is “one of the most scrutinized and regulated industries in the country,” calling the federal rating system “extremely complex” and largely based on staffing ratios.
Once the outbreak at Southeast was detected, San Antonio officials traced the locations where Southeast employees might have worked and tested staff and residents at those places. The city more closely monitored nursing homes that scored between 0 and 1 on the Medicare rating system.
The city still isn’t regularly releasing a list of centers with infections because “the media glare is crippling for some facilities, and our goal is for them to function better,” Woo said.
Abbott, the Texas governor, assured residents this week that the virus’s spread had slowed, announcing a partial reopening of businesses starting Friday.
Meanwhile, Karen Rosenbaum was panicking 90 miles away. There was a COVID-19 outbreak in the Brenham Nursing and Rehabilitation Center, where her 97-year-old mother and an 87-year-old cousin live between Austin and Houston.
At least 67 cases have been confirmed in the facility — owned by Regency, the same company with confirmed positives in facilities across the state, including Austin. The number accounts for nearly half of Washington County’s cases.
The nursing home was forthcoming at first, notifying Rosenbaum’s family by phone and mailing a letter about the initial infections. But rumors flew as the city and county refused to disclose whether the facility’s case count was growing.
Rosenbaum emailed a local radio station and the office of state Republican Sen. Lois Kolkhorst. The state later deployed emergency response teams to the facility.
“Too little, too late,” Rosenbaum said.
Her cousin died from the virus on April 26. Rosenbaum, a hairdresser in Brenham for 50 years, said several of her old clients are among the sick. Her mother recently tested positive.
At The Waterford in College Station, administrators began weekly conference calls with families to be more transparent, but — citing patient privacy — still didn’t broadly disclose numbers, relatives said.
The calls have helped, said Aguirre, whose mother was among the first deaths there. But the effort wasn’t enough.
“I would like to see the state of Texas change its laws, its restrictions, because this is not right,” Aguirre said. “It’s the opposite of transparency, and people are being hurt.”
Do you have access to information about nursing homes and assisted living facilities that should be public? Email [email protected], [email protected] and [email protected]. Here’s how to send tips and documents to ProPublica securely.
Perla Trevizo and Benjamin Hardy contributed reporting.
Correction, April 30, 2020: A caption with this story originally misstated where David Aguirre’s mother, Estela, died. She became ill at The Waterford at College Station, she did not die there.
