Texas will not release information about coronavirus clusters at state-run homes for Texans with disabilities

A State Supported Living Center located in Austin on April 21, 2020. Texas officials cite medical privacy laws to refrain from publicly disclosing cases of COVID-19 among staff and residents in state-supported living centers. Eddie Gaspar/The Texas Tribune

After two residents at a state-run home for people with intellectual and developmental disabilities in Richmond tested positive for the new coronavirus, Fort Bend County officials on March 30 publicly announced they were launching an “epidemiological investigation” into the facility, vowing to test anyone who came into contact with the patients.

Since then, it’s been radio silence. There have been no additional public updates, and no new cases announced. Asked directly about how many staff and residents at the home are infected, local officials won’t say.

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“We’re all asking questions about how many people have it,” said a parent of a resident at the Richmond center, who asked to remain anonymous, fearing their child would be penalized. “Families are getting angry. We’re not asking for residents’ names or dorms, we just want to know how many people are sick.”

None of the 13 state supported living centers — which house about 3,000 vulnerable Texans and employ 13,000 staff — provided case counts to The Texas Tribune. Eleven of the centers did not respond, and two directed inquiries to state officials. The local health department in Denton County stands out as the lone agency providing daily updates about the cluster of cases at the Denton home.

Families of the residents, who have been restricted from visiting in an effort to stop the spread, are pleading for information. Even they aren’t being told how severe the outbreaks are where their loved ones live.

Texas officials, citing medical privacy laws, are refusing to disclose comprehensive data on the number of cases among staff and residents at state supported living centers, where 43% of residents are medically fragile and more vulnerable to COVID-19.

Christine Mann, a spokesperson for the Texas Health and Human Services Commission, which oversees the centers, said she could confirm “at least one positive case” at six of the homes: Abilene, Austin, Brenham, Denton, El Paso and Richmond.

But at the Austin facility, staff was treating at least six patients as of April 10, according to an email from a HHSC nurse to employees of the facility that was obtained by The Tribune. Meanwhile, representatives of the facility declined to provide any tally of how many cases are at the site.

Asked about the cases mentioned in the April 10 email, Austin city spokesperson Jorge Ortega said “the facilities with known COVID clusters [are] not being identified by name nor are we providing detailed information about individual cases to protect patient confidentiality.”

In Denton County, health officials — citing a need for transparency — are providing daily updates on the number of infected staff and residents at the Denton home. They reported 54 cases among residents and 59 among staff, as of Tuesday.

“A single communication strategy to inform the public and dispel rumors, while preparing facilities for possible surge was critical,” Matt Richardson, director of Denton County Public Health, said in a statement. “Public health struggles with protecting health information while informing the community of important developments. This situation highlighted the need to share the DSSLC [Denton State Supported Living Center] status in real-time to mitigate a possible health disaster.”

Meanwhile, family members of residents at other centers say they have repeatedly asked administrators and local health authorities how many cases are on campus, but have gotten no answers. They worry about rapid spread, because depending on the severity of their disabilities, residents may not understand rules about hand-washing or maintaining a safe distance from others.

“If you have no idea what’s going on, you can’t make an educated decision as to whether you want to bring your loved one home and take the chance of us really getting sick, or whether you want to leave them there, thinking it’s a better situation there,” the Richmond parent said. “Are people still getting sick, or has it bottomed out? We don’t have a clue.”

Privacy laws

Parents and guardians are notified if their loved one tests positive, Mann said. But the agency, invoking a federal law that bars health care providers from disclosing information about a person’s health status, is withholding data on how many residents and staff have fallen ill.

The federal Health Insurance Portability and Accountability Act, or HIPAA, “prohibits us from releasing [personal health information] that may be used (even through the process of elimination) to identify a particular individual,” Mann said. “We would need consent from all individuals diagnosed with COVID-19 to provide total case count information for a specific facility.”

But legal experts say the state can choose to disclose aggregate counts from facilities.

“The health department can withhold almost anything, but it can, if it wants to, release some information that doesn’t identify patients,” Joseph Larsen, an attorney and board member of the Freedom of Information Foundation of Texas, said in an email.

Texas has kept a similarly tight lid on cases at nursing homes. After the Tribune reported that Texas initially failed to disclose details on cases in nursing facilities, state officials in early April acknowledged that about 13% have at least one case of the new coronavirus. Officials' most recent tally shows that number has grown, with 238 nursing facilities having one or more case, as of Monday. But the state is still refusing to report case counts for individual facilities.

On Tuesday, the federal Centers for Medicare & Medicaid Services announced new requirements that will “require nursing homes to inform residents, their families and representatives of COVID-19 cases in their facilities.” But those changes do not apply to Texas’ state supported living centers.

“While this new requirement does not specifically apply to SSLCs, HHSC has our own established process for ensuring families and legal guardians receive the information they need about the health and safety of their loved ones, in compliance with the laws that govern what information we are able to legally provide them,” Mann said.

Austin public health officials on Wednesday announced similar disclosure requirements for nursing homes and other long-term care facilities – and a city spokesperson said the new, stricter orders would apply to the Austin state supported living center.

But some states have opted for transparency. New York recently started publishing the names of nursing homes where there are COVID-19 fatalities. California and Florida are now disclosing the names of long-term care facilities with cases. Other Texas institutions have also been more open about case tallies. Universities, before they closed down for the year, voluntarily reported some cases of students with COVID-19. The state is also reporting the number of cases in prisons and juvenile detention centers.

Reporting cases

State officials say they are doing their due diligence by reporting all cases at state supported living centers to local health authorities. Those agencies then decide how to go about disclosing the numbers, Mann said.

“Local health departments follow their own policies and practices when determining what level of detail to share about cases or outbreaks,” Chris Van Deusen, spokesperson for the Texas Department of State Health Services, said in an email. “Communicable disease investigations are confidential, so they determine what’s appropriate to share in their communities, and that may vary from place to place.”

While officials in Denton County are reporting cases at the Denton home separately from the county total, several local health departments, including those in Austin, San Antonio and San Angelo, said they would not be publicly distinguishing between cases at the centers and those in the community at large. Officials in San Antonio and San Angelo told the Tribune they are not aware of any cases at their respective facilities.

“All positive COVID cases of people in Austin-Travis County are included in our dashboard under the ‘confirmed cases’ total,” Austin city spokesperson Andy Tate said in an email.

Across the state, Fort Bend County Judge KP George said the local health department will release “pertinent information” once its investigation into the Richmond facility is complete.

“As soon as the Texas State government informed us about the outbreak at their facility in Fort Bend County – the Richmond State [Supported] Living Center – we have continued an investigation on a daily basis for weeks in order to secure the health of everyone who works and lives there,” George said in a statement.

Meanwhile, other local officials are pointing fingers at the state, saying it’s their job to release information about the centers.

“Case investigation information would not [be] reported to the public,” Sandra Villarreal, director of the San Angelo Health Department, said in a statement. “The SSLC is responsible for their own media relations.”

George Bithos, the state supported living center ombudsman who advocates for residents, said the ombudsman can ask the state how many cases there have been, but he doesn’t have permission to release that information. And while he can ask about the status of residents, he can not inquire about staff.

“The official notification has to come from the agency,” Bithos said.

Edgar Walters contributed to this report.


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