State refuses to release data on care homes
TRANSPARENCY: Families call for reports on infections
As the death toll grows at Texas nursing homes, so has the number of requests for information kept by state health officials that would reveal which long-term care facilities have suffered coronavirus outbreaks during the worst pandemic in generations.
But the Texas Health and Human Services Commission, which regulates nursing homes and assisted living facilities, is attempting to keep its records secret, despite calls for more transparency from open-government advocates, some Texas lawmakers and family members worried about vulnerable residents.
“The public is being left in the dark, and we’re losing control of our ability to oversee the operations of our government,” said Joe Larsen, a lawyer with the Freedom of Information Foundation of Texas, which published an open letter last month urging the health commission to release its records on nursing home infections.
In a May 4 letter to the Texas Attorney General’s Office, Carey Smith, a lawyer representing the health commission, said the agency has received more than two dozen public records requests for nursing home data about coronavirus infections, but that federal and state laws prohibit the release of the information because it might identify infected residents and violate their privacy.
However, Texas legislators who wrote one of the laws cited by Smith said it doesn’t prohibit officials from releasing statistical information about COVID-19 in nursing homes.
“The statute was not intended to create a blanket protection for all health-related information,” said former Sen. Kirk Watson, DAustin, who authored the bill in the Texas Senate last year.
The sponsor of the bill in the Texas House, Rep. Giovanni Capriglione, R-Southlake, said releasing statistical data from nursing homes could benefit both consumers and government authorities. And, like Watson, he said the bill they passed doesn’t prevent state officials from releasing that information.
“So long as you can’t get personal identifying information, I don’t see why the current rules and statutes that we have don’t already allow that information to be released,” Capriglione said.
Federal law hasn’t stopped plans by U.S. health officials to collect coronavirus reports from nursing homes and publish the data in the coming weeks.
“We will be taking swift action and publicly posting this information so all Americans have access to accurate and timely information on COVID-19 in nursing homes,” said a spokeswoman for the U.S. Centers for Medicare and Medicaid Services.
Susan Lederer Russell, 65, said she didn’t see how the state could get away with keeping information about coronavirus cases in care facilities secret.
Already, she wrestled with whether she had done the right thing putting her 96-year-old mom, who has dementia, in an assisted living facility. Facing down a deadly virus made that harder.
Having a database she could check that listed coronavirus cases at her mother’s facility and elsewhere would give her added peace of mind, Russell said.
“It is my responsibility to take care of my mother,” Russell said. “If a particular facility is showing that they’re rampant with the virus, or if they do have a high concentration, it would be kind of an indicator that they’re not following the recommended protocols.”
“So long as you can’t get personal identifying information, I don’t see why the current rules and statutes that we have don’t already allow that information to be released.”
State Rep. Giovanni Capriglione, R-Southlake
In the dark
After facing criticism from families and advocates of nursing home residents, Texas began releasing statewide statistics that show the total number of coronavirus deaths at nursing homes, which provide round-theclock care, and assisted living facilities, which are less intensive.
As of Friday, 478 COVID-19 deaths — nearly half of the 1,042 reported in Texas — were at nursing homes or assisted living centers, records show.
But state health officials haven’t disclosed infection rates for each location, which has stymied families trying to protect their relatives. The lack of information also leaves hospice workers and other contract caregivers in the dark.
Certified nursing assistants from the Master Caregiver Company typically worked with elderly residents at home. But they visited several clients in care facilities to give extra support.
At one, a caregiver happened to find out a resident was hospitalized with coronavirus, company president Rita Justice said. The facility never notified the company directly. If they were to go online and look for information about cases at a facility, Justice said, “we can’t find it out either.”
“I think it is absolutely a problem,” Justice said, adding, “They never have contacted us and said we have COVID here.”
Privacy concerns
Under the Texas Public Information Act, government records are presumed to be open to the public, but the law also exempts some categories of information. Government officials are required to contact the Texas attorney general if they believe records fall under an exemption.
In her letter to the attorney general, Smith said the health commission has received 28 open records requests for nursing home data from news outlets and other parties. Smith said that releasing coronavirus data for each facility could open the door to identifying patients, which would violate state and federal laws.
Among the laws Smith cited was the federal Health Insurance Portability and Accountability Act, which says health care providers must protect medical records that could identify patients, and the Texas Medical Records Privacy Act, which expanded privacy provisions to schools, businesses and other entities that handle patient information.
Smith said the Texas health commission is one of the entities that must comply with the state’s medical privacy law. But her claim that releasing COVID-19 statistics would identify individual patients was criticized in an April 28 letter from Kelley Shannon, executive director of the Freedom of Information Foundation of Texas.
“The requests at issue simply seek information that will enable the public to know which facilities have had confirmed COVID-19 cases,” Shannon wrote. “These facilities have dozens or hundreds of persons.”
Smith noted that a new section of the Texas Public Information Act says “protected health information” is confidential. That language came from Senate Bill 944 during the 2019 legislative session. Capriglione said the bill’s authors merely “copied and pasted” language from pre-existing health laws to make it clear that state entities should not release information that identifies individuals with health conditions.
In some cases, for example, there might be a facility that is so small that describing the scope of an outbreak could effectively allow people to identify sickened residents, he said. But if privacy rights are protected, the North Texas lawmaker said most types of health statistics should be released.
“If you can’t figure out who has it, then send the cumulative info,” Capriglione said.
Inconsistent policies
At the local level, health departments in Greater Houston have taken different approaches to comply with state and federal laws, and they’ve reported COVID-19 cases in nursing homes and assisted living facilities with varying degrees of transparency.
Some counties provided one-time reports on specific outbreaks but didn’t continue to provide consistent updates. In Fort Bend County, officials pointed to an obscure webpage where they said they were keeping a tally of facilities with COVID-19 infections. That number has remained unchanged at four facilities for weeks, and the homes are not named.
Montgomery County health officials only disclose the names of nursing homes with more than one case.
Health officials in Harris County and the city of Houston haven’t released statistics of coronavirus infections for individual nursing homes.
“Providing this information can lead to patients being identified, especially since long-term care facilities are the patient’s place of residence,” said Scott Packard, a spokesman with the Houston Health Department.
The Galveston County Health District reported an outbreak at The Resort at Texas City. But days after Natalie Fremont’s family learned that Regent Care Center in League City had a case, she still did not see it noted in the county’s daily updates.
Fremont, 40, sent a Facebook message to the district, asking them to release case information on the facility where her 90-year-old grandmother lived.
“The families who have loved ones at the center deserve to know that there are positive cases at the center,” she wrote. “Transparency in how this is being handled will only garner more trust and cooperation from the community you serve.”
Marvena Miner, the administrator at Regent Care, said staff notified families after the first confirmed case and tries to offer relatives updates at least weekly. The lab results are reported to the county, she added.
State Rep. Todd Hunter, R-Corpus Christi, who has championed open government legislation in the Texas House, said that if more information doesn’t flow from the state on the spread of COVID-19 in long-term care facilities, he will pursue a fix in the upcoming 2021 session of the Texas Legislature.
Hunter said disclosing more information about COVID-19 cases and deaths would help identify potential problems — and relieve fear and anxiety in the process.
“The pain is not only felt by the person inside,” Hunter said. “It’s felt by the entire family and friends. So to me the more you disclose, the better off we are.”