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Indiana's lack of nursing home COVID-19 info leaves families without answers

Some health departments releasing info, state is not
Posted at 5:10 PM, May 08, 2020
and last updated 2020-05-11 09:33:41-04

INDIANAPOLIS — A third of the people who have died from COVID-19 in Indiana have been residents in nursing homes or other types of long-term care facilities, according to state data. Yet, the Indiana State Department of Health is still not publicly releasing where those COVID-19 cases and deaths are happening.

Although the state has introduced new requirements that nursing homes notify families, there’s a new push to make COVID-19 nursing home data, broken down by facility, available to the public.

Long-term care COVID-19 deaths make up 33% of all COVID-19 deaths in the state of Indiana, according to state numbers, but long-term care residents only constitute for roughly 10% of all positive cases across the state.

READ | State inspecting three nursing homes after four employees die from COVID-19

Family members push for nursing home cases, deaths to be made public

Pam Ellis’ mother, Carolyn Dolph, lives at Westside Village Nursing Center on West 10th Street in Indianapolis.

Like most other facilities in the state, Westside Village, has restricted visitors.

“It's just really hard not to be able to see her when you're used to seeing her every day,” said Ellis. “We make calls and calls again, and we talk to her a lot.”

Ellis, a pharmacist, has started keeping detailed notes since COVID-19 began, and she said a nurse told her in mid-April that the nursing home had placed COVID-19 positive patient in her mom’s room.

"I was just like, what?” said Ellis. “I work in a hospital. This is not what they recommend at home. You're supposed to be in separate rooms."

Shortly after receiving that news, Ellis' fears for her mom's health became real.

“She tested positive and I found out from inside staff,” said Ellis. “Mom is doing okay. There were some days where she seemed very dehydrated and lethargic, but she’s got her spunk back.”

On May 4, the state began requiring nursing home facilities to send emails and voicemail messages to nursing home residents and their families with updates on COVID-19 cases and deaths in their facility.

They’re also supposed to share the information with prospective residents.

Pam Ellis showed RTV6 an email from Westside Village that was dated May 5, it read: “We have 15 positive cases of COVID in the facility. Staffing is looking good. Still at 6 deaths related to COVID.”

Ellis said those numbers do not add up with what the nursing home staff have told her.

"I still think from conversations on April 22 that I had with inside staff that the numbers are higher than that," Ellis said nurses told her then that there had been at least eight deaths at the nursing home from COVID-19.

Ellis said she believes Indiana nursing homes should be required to report all COVID-19 cases and deaths to the public. Even if its just making sure the information gets posted on the Indiana State Department of Health’s dashboard.

“I feel like it's really important because otherwise there could be deceit and cover-up and they might say ‘oh this was a natural progression,' instead of honesty that it is COVID related and not natural deaths,” said Ellis.

Call 6 Investigates Pushes For Release of COVID-19 Nursing Home Data

According to the non-profit organization Kaiser Family Foundation, 43 states are reporting some level of data about coronavirus cases & deaths in their long-term care facilities.

There are only nine states that report fully comprehensive data on cases and deaths at the facility level, including Illinois and Oregon.

Other states, including Michigan, Mississippi, and Pennsylvania, report data at the county level, citing privacy concerns about reporting at the facility level, according to the Kaiser Family Foundation.

PREVIOUS | Families push nursing homes for more information

“ISDH is providing aggregate totals at this time and is not breaking down cases by facility due to privacy reasons,” the Joint Information Center said in an April 24 email response to RTV6.

The state’s aggregate totals show the overall number of people who have died at Indiana nursing homes and long-term care facilities, but do not break down any of those numbers to the facility or even county level. They are also only released on a weekly basis, and do not break down dates or times of infection or death reports.

For example, the image below shows the information that was released by ISDH on Monday, May 4.

When Call 6 Investigates clarified to the state that we are not seeking any specific patient information, we received the following response in an email dated April 30: “As we’ve stated, ISDH is providing aggregate totals at this time and is not breaking down cases by facility."

RTV6 has filed a complaint with the Indiana Public Access Counselor in an attempt to get the information, and PAC Luke Britt says he is looking into the matter.

Call 6 Investigates has also been and continues to reach out to county health departments across the state.

Some counties — Johnson, Boone, and Hamilton, for example — are releasing limited COVID-19 information about specific facilities.

READ | 54 residents at 6 nursing homes in Johnson Co. have died from COVID-19

Some nursing home providers have also been very transparent about their numbers, such as Trilogy Health Services LLC, which has created its own dashboard on COVID-19 cases.

But by and large, the public is still not seeing this information and does not have access to it in a timely and efficient manner.

State Lawmaker Pushes For Release of Information

"This is life and death." — Rep. Ed Delaney, D-Indianapolis

Rep. Ed Delaney is calling on the Governor’s office and the Indiana State Department of Health to release COVID-19 cases and deaths by nursing home facility.

“This is life and death,” said Delaney. "We can't hide this. This is going to destroy confidence to the nursing home industry.”

Delaney pointed out that nursing homes are dependent on Medicaid and Medicare, which are paid for with your taxdollars.

"I'm calling for open information as to which nursing homes are having what problems,” said Delaney. “It's important to the staff, to the public, to the people choosing nursing homes, to legislative funding of this industry."

Delaney said prospective residents and their families should be able to go to a website to view how many cases have happened at a facility, rather than relying on a staff member to tell them that information in person or over the phone.

“Our families have to decide whether to put their loved ones in a facility or not,” said Delaney. “I understand it’s uncomfortable for the nursing home industry to have to reveal this information, but we’re investing our family, our lives, our future. Employees are investing their lives.”

Delaney said the information could also be valuable to people who work inside long term care facilities.

“So that’s the choice we have to make,” said Delaney. “It’s a difficult choice, but to me it’s an obvious choice.”

Families Push For Answers

Pam Ellis feels stuck.

She said Westside Village would not even allow her to see her mother through a window until after Call 6 Investigates started asking questions.

Ellis says she can’t transfer her mother to another facility now because she’s already tested positive for COVID.

“She’s now past the 14 days and I’ve been asking when they’re going to re-test her and I can’t get a straight answer,” said Ellis.

Ellis has filed a complaint with the state’s Long Term Care Ombudsman, a state mediator of sorts, but she said it didn’t help her situation.

Ellis said she also wants to make it clear she is not upset with the nurses at her mother's nursing home, but with those that are in charge.

"They're the heroes in this,” said Ellis. “They really care for residents they've been taking care of for years. It's like a family. But it would be nice to have honesty."

Call 6 Investigates has reached out to the operators of Westside Village and we are still waiting to hear back.

What You Can Do

If your family's nursing home is not providing the information at your request, you can report it to familyoutreach@isdh.in.gov.

Call 6 Investigates is also tracking nursing home cases in Indiana, and we want to continue to add to that list.

Has your nursing home reported deaths or COVID-19 cases to you? Email kara.kenney@wrtv.com to share that information with our team.

You can see the full list of nursing home COVID-19 data compiled by the RTV6 team in the document below.

Note: In a previous version of the above spreadsheet it was CrownPointe in Hancock County was incorrectly noted to have had COVID-19 cases and deaths. CrownPointe has had 0 deaths or cases since the pandemic began and the numbers have been updated correctly.