AUSTIN (KXAN) — Jo Carol Pierce pointed to the small, turquoise stones in the pendant hanging around her neck with pride. The necklace originally belonged to one of her four sisters, Cindy, who moved into a senior living facility in North Austin several years ago, after her health started to decline.

“I love it. We pass it around,” she said of the necklace. “We dream about her a lot.”

Cindy died during the winter storm in 2021, so her sisters now wear the jewelry in her memory, to honor her. Jo Carol said remembers Cindy’s “beautiful mind” and love of Greek mythology.

When temperatures dropped and the state was blanketed with ice and snow, many of their family members lost power. Jo Carol said they were told Cindy’s home had a generator, so they didn’t worry.

Beth, another Pierce sister, added, “We just assumed Cindy would be OK. She was in a place where she was being taken care of.”

According to the sisters, they only later learned Cindy had been rushed from her home to the hospital with a concerningly low body temperature. An investigation report obtained by KXAN investigators from the Texas Department of Health and Human Services reveals the facility’s generator only served part of their operation — not the assisted living side, where Cindy lived. The report stated that “residents were left in their rooms in freezing temperatures” and the facility did not have “back up food supplies or water.”

The document also notes that staff left a resident’s window open. The sisters say it was Cindy’s window.

“It’s more sad about the way she died, rather than that she died,” Jo Carol said.

The push to require generators

Tragic, complicated stories such as this one are only part of why State Representative Ed Thompson (R-Pearland) switched his focus from trying to require homes to have generators on-site, to instead asking for a survey of all long-term care facilities’ backup power situation.

“We’ll be able to get a better idea of exactly what’s going on,” Rep. Thompson said.

During the 2021 legislative session, he originally filed House Bill 2325 to require nursing and assisted-living facilities have a generator or another comparable backup power supply on-site in preparation for future weather events or blackouts. However, other lawmakers and industry advocates questioned the logistics of implementing these requirements at facilities of different sizes and types — such as homes with less than 16 beds located in neighborhoods.

“You can’t just put forth this mandate and expect everybody to make it, particularly when some of our providers in rural and underserved communities are just barely hanging on,” said Carmen Tilton with the Texas Assisted Living Association (TALA).

She said about half the assisted living communities in Texas serve 16 or fewer residents, with many located in the middle of residential neighborhoods. She also emphasized that many of them are “private pay,” meaning they don’t receive the same kind of Medicaid reimbursements as skilled nursing facilities.

“One of the biggest frustrations, I think, or tensions may be, between the legislature and the industries that they’re regulating is: if you make it mandatory, and it’s just not possible, then you then it ends up being a… It’s a hammer,” she said. “Even if you wanted to comply, you couldn’t.”

Thompson said, as a small business owner, he understands. He and Tilton agree the survey will help them determine more specific and tailored solutions for each home in Texas.

The survey questions include:

• What type of facility is this?
• What is the license capacity of the facility (how many residents)?
• Does the facility have a working generator or other emergency power source that can provide continual power to the facility during severe weather events or other emergencies? Yes or No
• What systems and equipment in the facility are powered by the generator? For example: Emergency lighting and exit signs, fire alarm system, emergency electrical receptacles, air conditioning, heating systems, refrigerators and freezers
• Is it configured to provide heating for at least part of the facility during a power outage? Yes or No
• Which part of the facility can be heated by the generator?
• Is it configured to providing cooling for at least part of the facility during a power outage? Yes or No
• Which part of the facility can be cooled by the generator?
• What type of fuel does it use? For example: diesel, natural gas, propane, gasoline
• If the facility has a generator, how many hours of operation are possible based on the fuel supply on-hand?

Waiting on survey results

As the one-year anniversary of the storm approached, a spokesperson for HHSC told KXAN it could not release the results because it was still accepting responses.

The agency’s website stated the original October deadline was extended to mid-November. The spokesperson said they had received 1,440 responses from assisted living facilities, out of the state’s more than 2,000 registered assisted living operations.

Tilton said she believed the survey went out at a time when facility operators were focused on implementing other legislative requirements — in addition to protecting residents against the spread of a new variant of COVID-19.

“I think it just got a little bit lost in the shuffle,” she said.

The HHSC spokesperson said it extended the deadline, provided reminders and followed up with providers who had not yet responded. This month, it plans to work with long-term care associations and the state’s Long-Term Care Ombudsmen on an additional outreach effort.

“We developed a strategy to maximize participation in the survey so as to provide the most complete picture of generator use among assisted living and nursing facilities as per the intent of the legislation,” the spokesperson said.

So far, it has received more than 1,300 responses from facilities identifying themselves as skilled nursing homes — despite only around 1,200 skilled nursing facilities being registered in Texas. The spokesperson explained some facilities “checked the wrong box” and identified themselves “erroneously” as the wrong classification of long-term care. Since the survey is still open, the agency is correcting the data as responses are received.

Tilton said she’s glad to hear HHSC has launched a more formal outreach effort, using Ombudsman or other state employees, to spread awareness with facilities about completing the survey.

“There is no reason why all of these individuals who are coming inside communities who are talking to administrative staff or talking directly with executive directors can’t also help to make sure that everybody is aware of what they need to do and able to comply with,” she said.

Rep. Thompson told KXAN it was disappointing to hear so many survey responses were outstanding.

“My office — we can follow up with them to find out exactly what is going on there,” he said.

He said U.S. Senators with the Special Commission on Aging have reached out to his office, as they evaluate a potential generator requirement on the federal level. While he believes this issue can be handled “on the state level,” his office has worked to answer the federal lawmakers’ questions.

Rep. Thompson said he plans to bring this effort forward again during the next Texas legislative session, keeping the critiques from the industry associations and context from the survey results in mind. But getting those results, he says, is the first step.

“I think it’s incumbent upon us to protect these elderly folks that are in these facilities,” he said. “So, we need to figure out a way to keep these people in place as best we can and make them comfortable.”

The Pierce sisters said it was “unbelievable” when they learned how Cindy died.

“Cindy could have lived many more years,” Beth said.

Jo Carol added, “And not been cold!”

According to the state investigation report into Cindy’s facility, allegations regarding the physical environment, residents’ rights, staffing for evacuation, following the emergency response plan and issues with administration and personnel were substantiated. The report states the facility was cited.

The sisters called her facility “unprepared and neglectful,” but also placed blame on the long-term care industry as a whole — and the entire state power system — for failing their family. They both said they hope changes are made so others don’t have to suffer a similar loss.

“She deserved to be loved. She deserved to be with her family when she died, and she deserved to have a chance to say goodbye to people,” Jo Carol said.

In-depth: Florida’s generator laws

In 2018, Florida passed a law requiring backup generation in long-term care facilities, after some residents died in the sweltering heat during Hurricane Irma the year before.

All skilled nursing facilities and larger assisted living facilities there must have 72 hours’ worth of fuel for their generators on-site. The law requires small assisted living facilities to have 48 hours’ worth of fuel.

Thompson said implementation of the law in Florida hasn’t been “perfect,” but he applauded them for taking the step.

Tilton also noted that the Florida legislation was “extremely expensive” for the industry, costing potentially hundreds of millions of dollars.