Clockwise from top left, Sean Gatewood, Tim Carpenter, Barbara Hickert and Rocky Nichols during a recording of the Kansas Reflector podcast on public reporting on COVID-19 clusters by the Kansas Department of Health and Environment. (Sherman Smith/Kansas Reflector)
TOPEKA — Disability rights advocate Rocky Nichols is convinced Kansas’ public disclosure of specific COVID-19 outbreaks will save lives and this underlying right-to-know philosophy should compel the state to continue broadening release of data.
Nichols, executive director of the Disability Rights Center of Kansas, said the weekly update of hotspots released by the Kansas Department of Health and Environment directly served interests of people with disabilities and the elderly. They’re the most vulnerable to coronavirus and the least equipped to defeat an illness linked to the death of more than 630 Kansans.
“When it comes to site-specific reporting of COVID outbreaks, we feel strongly that the public has a right to know,” he said. “Nationwide, people with disabilities and seniors living in these congregate care facilities make up about 1% of the population, but they make up 50% of the deaths. It’s not just a good government thing. It’s a life-or-death situation.”
In Kansas and elsewhere there have been issues with long-term care facilities declining to reveal incidence of COVID-19.
Last week, KDHE released a modified version of its coronavirus cluster report. The first edition named businesses with more than 20 positive cases and gatherings or events linked to at least five cases in the past 28 days.
After analyzing both praise and complaints, KDHE revised the report to bring attention to all instances of five or more cases emerging in the previous 14 days. It is reconfigured to give consumers better real-time information about movement of COVID-19 in Kansas, said Lee Norman, secretary at the state Department of Health and Environment.
Eighty percent of deaths in Kansas associated with the virus have been among people 65 years of age or older. This age group represents only 11.1% of the 56,000 Kansans testing positive for the virus.
Sean Gatewood, who works with the KanCare Advocates Network serving interests of people served by Medicaid, lauded KDHE’s decision to offer a weekly summary of which companies, organizations or events with outbreaks.
The agency can improve value of its report by lowering the threshold to one case for residential facilities caring for the elderly and disabled, Gatewood said. The state can justify maintaining a five-case minimum for businesses, he said.
“I think that reducing that down to one active case would be prudent,” he said on the Kansas Reflector podcast. “The viral load in a congregate living setting with people with compromised immune systems can just, you know, run like wildfire. In my dream world, that’s how I would do it.”
KDHE culled from its first version of the report clusters that began months ago and continue with only a few new cases, but Nichols suggested ebb and flow of all outbreaks should be publicly presented on KDHE’s website.
Barb Hickert, the state of Kansas’ long-term care ombudsman, said tracking of extended outbreaks could be useful to consumers and operators of care facilities whether they were eradicated, stable or growing.
“Facilities who have had a case or an outbreak and have resolved that, I think that’s important information for consumers to have. How did you do that? And what happened?” she said.
Hickert said there were problems early in the pandemic with administrators of nursing homes and assisted-living facilities withholding information on the virus’ spread from residents and family members.
Stigma surrounding COVID-19 made sharing information embarrassing to operators of those facilities, she said. Unfortunately, family members were learning about specific outbreaks from news accounts, she said.
She said the level of transparency at Kansas facilities improved with the U.S. Centers for Medicare and Medicaid Services issuance of guidance mandating the sharing of reports on exposure to the virus. Compliance isn’t universal, she said.
“We also believe very strongly that it is important that consumers, whether they’re residents that already live in those facilities and their family members, or potential consumers, people who want to move into a facility, that during this time that they have this information about where there are cases and clusters,” Hickert said.
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