INDIANAPOLIS — The Indiana State Department of Health’s claim that it doesn’t have nursing home death and case information in a document is not sitting well with state lawmakers, senior advocates and health care experts who say the state should release the information in the interest of public health.
Since mid-April, Call 6 Investigates has requested the state provide data showing where people are dying in Indiana nursing homes and where the COVID-19 outbreaks are happening.
The state denied those requests, citing “privacy reasons,” even though RTV6 has never asked for patient information.On May 4, Call 6 Investigates Kara Kenney filed a formal complaint against the state with the Indiana Public Access Counselor Luke Britt.
“We believe the public and taxpayers deserve to know this information as soon as possible,” wrote Kenney in the formal complaint.
State’s Responds: “ISDH does not have the records requested”
In a written response to the Public Access Counselor provided to RTV6 this week, an attorney for the Indiana State Department of Health emphasized the agency is providing only aggregate totals, which only show the overall number of people who have died at Indiana nursing homes and long-term care facilities.
“In sum, ISDH does not have the records requested,” read ISDH’s response. “Moreover, Indiana law does not require ISDH to create records to fulfill these requests.”
ISDH claims its computer program does not generate a report with running totals for each facility for either COVID-positive cases or deaths.
“To generate a list of all facilities with their cumulative case and death counts would require an ISDH employee to create a new record by manually analyzing information in the reporting system and to continually analyze it to keep it updated,” read the ISDH response.
ISDH also emphasized that since May 4, long-term care facilities are required to give residents and their family members updates about COVID.
“This is a more effective, and timely, method of communicating COVID information to residents and families,” wrote the ISDH attorney in response to RTV6’s complaint.
Families want state to publish COVID-19 statewide database for nursing homes
Lauretta Robinson was an active 74-year old until a series of mini-seizures sent her to the hospital and then SouthPointe Healthcare Center on Indianapolis’ south side.
"We thought if that means she's going to recover and get better care than at home for three weeks, we can do three weeks,” said her daughter Cassie Robinson.
Cassie said it was a tough call to leave her mom at a long-term care facility, given nearly half of the state’s COVID-19 deaths have been at long term care facilities.
"We went strictly on the recommendation from the hospital,” said Cassie.
Lauretta’s daughters say after five days at SouthPointe, their mom became so sick she had to go back to the hospital and is now fighting for her life.
"My mom was unrecognizable,” said Cassie. “She had bedsores all over her bottom. She was so dehydrated she couldn't speak."
“I’m appalled, and I’m upset,” said Lori Harris, daughter of Lauretta. “My family is devastated just by seeing how she is now.”
Even though Lauretta has tested negative for COVIDC-19, her daughters said she is showing some symptoms which is why she’s now in the COVID unit of the hospital.
COVID-19 information is not available on SouthPointe’s website, nor does the Indiana State Department of Health post information on facilities.
Lauretta’s daughters were not aware of the presence of COVID-19 at SouthPointe until after Lauretta was already staying at the facility and they received a voicemail message with some COVID-related information.
SouthPointe Healthcare Center has had 2 COVID-19 deaths, a spokesperson said, and 21 residents and 6 employees have tested positive.
“Southpointe Healthcare center is rated five stars for the quality of care offered, according to Nursing Home Compare,” said Fred Stratmann, Spokesman, CommuniCare Family of Companies. “We are confident that the person in question – like all residents of the center – received the very best care possible during their stay. We can also state with 100% certainty that this resident did not acquire sepsis at Southpointe.”
It’s not clear if Lauretta’s current medical condition is related to COVID-19 or not.
The daughters say the state should have a database of nursing home deaths and cases, broken down by facility, so families can look through the information before deciding where to take their loved one.
"The only way you're going to make the right choices for your loved one is to have accurate information,” said Cassie. “If you can't go in a facility yourself, you're depending on the accuracy of the information that's reported."
Although the Centers for Medicare and Medicaid Services (CMS) has started posting nursing home death and case information by facility, it is not reliable.
For example, CMS data showed SouthPointe did not report any nursing home data at all to the federal government.
A spokesperson for the facility provided evidence to RTV6 that they had, in fact, uploaded their COVID-19 numbers.
Another reason why many are pushing for the Indiana State Department of Health to post where people are dying in Indiana nursing homes and where the outbreaks are happening.
“If you're not getting the information, then the decision you make for your loved one, can be a very bad decision," said Cassie.
Public Access Counselor says ISDH didn’t violate law
Public Access Counselor Luke Britt issued an opinion this week to RTV6’s formal complaint seeking a breakdown of nursing home deaths and cases by facility.
“The Indiana State Department of Health did not violate the Access to Public Records Act if it does not maintain the documents sought,” Britt wrote in his opinion.
Britt said ISDH does not have a “running tally, database or spreadsheet” with the information.
The Public Access Counselor acknowledged the importance of the public having access to the nursing home information.
“Obtaining information regarding outbreaks among vulnerable populations allows families to make better decisions about their loved ones in those facilities,” wrote Britt.
“It’s remarkable. It’s fraudulent” Lawmakers, experts and advocates react
We shared ISDH’s response and the Public Access Counselor's opinion with healthcare experts, lawmakers and senior advocates.
Seema Mohapatra is a healthcare expert and professor at IU McKinney School of Law.
“I was really surprised this wasn’t already happening,” said Mohapatra. “The health department has every interest in getting the information out to the public. You can compile it into an Excel document and they can add up the cases, so I don’t know what the fear is of why not to do that.”
Mohapatra said state lawmakers need to do something.
“You've uncovered an area where there is no regulation, but there is a public interest,” said Mohapatra. “We need to act to make sure in the future we don't have this kind of issue happen again."
AARP Indiana director Sarah Waddle is also concerned by the state’s response.
"It really leaves us with more questions than answers," said Waddle. “I don’t really claim to understand what their thinking is here.”
AARP Indiana wrote a letter to the Governor urging them to release the data, but Waddle said the state responded that aggregate data is adequate.
“As we’ve seen in recent weeks, that couldn’t be further from the truth,” said Waddle. “The state has this data and they can clear all of this up for us by making it public, and therefore making our communities more safe."
State Representative Ed Delaney, D-Indianapolis, called the state’s response laughable.
“It’s remarkable, it’s fraudulent,” said Delaney. "The coach wants to tell you we have how many points, but I am not going to tell you who scored them. I find that incredible."
Delaney said if it’s an issue of funding, he supports that.
“I’ve tried to get more funding for public health, and I was rejected every time because it costs money,” said Delaney. “I never thought it would come down to we couldn’t know simple facts that we go through the governor’s office and then disappear.”
RTV6 asks state leaders whether they’re tracking the information
The state is collecting nursing home death and case information.
Long term care facilities are required to report a death or case to the state within 24 hours.
At Wednesday’s news conference, RTV6 asked Governor Eric Holcomb and State Health Commission Dr. Krix Box whether the state is tracking the information if they can’t provide any documents.
They directed the question to Dr. Dan Rusyniak, Chief Medical Officer at Indiana Family and Social Services Administration, who responded they don’t have a “cumulative list of every facility.”
Here’s his entire response:
“The way we’ve collected information from the beginning is after the Executive Order went in, we created an online survey and that order required Long Term Care Facilities to report within 24 hours of their knowledge if they have a case or if there was a death. So that’s the information that we get, and we look at that in 2 weeks' intervals. What we’re looking for, particularly, are there new cases that would signify a new outbreak in a facility. We can have our strike teams go in there and we can have our infection control processes in place. While we have chunks of time, we don’t have a cumulative list of every facility, all of their cases, and all of their deaths.”
RTV6 will keep fighting for this information
With many facilities still limiting visitors, families say public information is key to making a good decision about their loved one.
Call 6 Investigates will keep fighting for this information.
In the meantime, we’ve compiled data from county health departments and facilities who are choosing to release the data.
You can see the full list of nursing home COVID-19 data compiled by the RTV6 team in the document below. This list will be continuously updated as new numbers are provided.